tag:blogger.com,1999:blog-49222584379734318812024-03-13T15:33:21.081-05:00LIFE IN THE LAND OF "L"The "L" is not for loser, although sometimes, OK fine you caught me..LOTS of times I am one. The "L" isn't even for love but there is plenty of it to go around. The "L" is for Leukemia and the journey that I am taking in order to reach the promise land called "remission". This blog is a way for me to express myself in all the rampant emotions that come along with having your life flipped upside down with one diagnosis. So come on...you know you wanna share in this journey with me....Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.comBlogger37125tag:blogger.com,1999:blog-4922258437973431881.post-9027172757368800872011-07-28T22:53:00.001-05:002011-07-28T22:54:34.213-05:00Be Careful What You Wish For.....What feels like lifetimes ago I had a classmate that had his tonsils removed and when he returned to school he told me about how he had to go to the hospital to have it done. He said there were nurses that took care of him and had to come when he pushed a button. Even if all he needed was another blanket or the television station turned, they had to come. He continued on to tell me how he got all of the popsicle's and ice cream that he wanted. As for the school work that he was missing, like the daily black board "pop quiz" questions or writing what seemed like endless lines of definitions....he got worksheets that contained far less work than what we did in class.<br />
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I remember thinking how nice that sounded without thinking about the fact that you needed to be sick or having surgery to be in the hospital. So I went home and that night I laid in bed looking out the window at the clear night sky above and made a wish. "I wish that I could go to the hospital".<br />
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About a week or so later, while sitting out at recess I realized that maybe I shouldn't have taken all of this kids descriptions of a utopian society when he was busy reconstructing something he saw on He-Man the day prior using petrified dog shit found under the jungle gym. Yep, I'm pretty sure this was the start of me being led astray by males....just kidding.<br />
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I went home that night and laid in bed looking up at the nighttime sky and tried to un-wish the previous weeks wish. Man how easy life was as a child.<br />
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Life went on and I changed from child to preteen to unruly teen to teenage mother and with time and reality I forgot about the wish for hospital stays with ice cream and magical buttons that bring people to help....and BOOM I get cancer and I'm like "SHIT, I seriously hope that wish where I have a giraffe living in my kitchen and humpback whale residing in my bathtub DON'T happen"!Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-78512461492061089482011-05-15T01:44:00.000-05:002011-05-15T01:44:04.123-05:00It's funny how 2 1/2 months feels like a lifetime ago...If I had to describe what has gone on since my last post at the end of February with only one word I'd have to go with....UNBELIEVABLE.<br />
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After 5 1/2 months of remission I received a phone call around March 17th from my oncologist advising me that my last set of labs drawn the first week of March were "questionable" and I needed to come in and see her on March 21st instead of waiting until my April 16th appointment. I was feeling okay at the time of the phone call. A little fatigue but nothing to be alarmed about. I'd had a cold for a few weeks but nothing crazy. I wasn't bruising easily, there were no petechia on my skin, I wasn't running any fevers and outside of dealing with the unrelenting pain of my spleen and the daily issues with nausea and vomiting I was managing to have a somewhat normal life again. I wasn't panicked. It was just another doctors appointment. Another check-up to get through. No big deal.<br />
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I made my way through the week looking forward to attend a friend of ours 2yr old birthday party and the crawfish they would be boiling. It would be my first crawfish boil in over a year so I was super excited for it. The day of the party arrived, March 19th, and although I was a little more fatigued than usual I wanted to attend. We made our way out to their home and settled into the idle light chit chat that encompasses any children's birthday. There were talks about the 2nd baby on the way and how the birthday boy was adjusting to the idea of another baby joining the family. I got to visit with people I haven't been able to see in some time and the day was easy, sunny for this time of year and life felt light. Right after eating I could feel that I was a little more tired than usual and so I asked if I could lay down in our friends room. Within minutes of my head hitting the pillow I was sound asleep. Jon let me rest for a little over an hour before coming in to check on me. <br />
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This little ritual of having to nap while out at someones house was not unusual so there was no need for concern or cause of alarm in either myself or Jon's mind. I came back out and rejoined the festivities and a few hours later after everyone had their fill of crawfish, cake, goodies, presents and the general joyfulness of a child's party we headed home. On the drive I noted that I was still tired and in need of some pain med for the pain in my upper left abdominal area, but other than that there wasn't any issues.<br />
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I went to bed a bit early that night and when I woke up Sunday morning it felt as though I'd been in a fight in which I wasn't aware of participating in. I literally took time to check my body over for any bruising and as Jon passed me I asked jokingly if we had started a Fight Club while I was sleeping. He laughed and said, "the first rule of Fight Club is that you don't talk about Fight Club". I chuckled back and turned on my heating pad, took a pain pill and climbed back in bed to rest and take it easy. <br />
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We had rented some movies that needed to be watched and returned later that night. Jon came in to ask if I wanted to come lay on the couch and watch "The Next 3 Days" with him. I said yes and gathered up my pillows, a blanket and grabbed a jacket and knit cap because I felt unbelievably cold then made my way out to the living room. I made it 1/3 of the way into the movie when I felt like I needed to take my temperature. I just had this feeling like I was running a really high fever. I went and found the thermometer and as I heard it beep to advise that it was ready to be read I got this sick feeling in my stomach. I read the temp and almost shook the digital instrument in attempts to make it NOT say 102.4 degrees. <br />
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I didn't want to believe that I had spiked a temp so high and so quick that I placed the thermometer back in its case, pulled off my cap and threw back the blankets feeling that the combination of the two were the culprits for this temperature. After another 20 minutes of uncontrollable teeth chattering and feeling like I was shaking so bad from being cold that my muscle and bones ached I took my temp again. I stupidly thought it would be better but I was mistaken when it beeped and I read that my temp was now a lovely 102.7 degrees.<br />
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Well shit! There goes my peaceful Sunday. I told Jon to pause the movie and as I called my oncologist I told him the temp that the thermometer read. I could see the look in his eyes go from "relaxed Sunday" mode to the "my wife's still battling cancer" mode. I hate that look. But it was what it was and so I awaited a call back from Dr. Zhuo. We watched the movie to pass the time and thank God for the distraction because it took her almost 45 minutes to call me back. When she did she wasted no time to tell me that she didn't want me waiting to come for my appointment which was set for 8am the next morning. She advised me to go to the ER immediately. She felt that I was probably in need of a transfusion since she had seen those "questionable labs" but for just a moment I thought about asking her exactly what the labs showed because I had this feeling in the pit of my stomach that something much more serious was happening that would require a bit more than just a transfusion.<br />
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To be honest I thought that it was my spleen. When we made our way to the ER and they were moving so quick to get me from triage, to a curtained off gurney and finally to an isolation room in the span of about 45 minutes I knew deep down that I wouldn't be going home. I knew that I was going to have to be admitted. No one said that to me until a few hours later but I noticed that as the minutes turned to hours the ER nurses and doctors weren't looking at me the same. It could have just been me being tired and slightly paranoid but I swear it was like they were keeping something from me. As if they were waiting for my oncologist to come and have a "talk" with me about my labs. <br />
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Once I was admitted they moved me to an isolation room on the 7th floor which is the new floor for the oncology patients. Even being in remission I have to go on this floor, especially since they advised me that I was neutropenic. My level of worry was still somewhat low because I'd had bouts of neutropenia once I'd gone into remission. It basically meant that I needed to get transfusion of blood and platelets and I'd be good to go. The thing that started to ratchet up my worry factor was the fact that A) my oncologist, Dr. Zhuo had not yet been in to see me although I'd been visited by the oncologist that was on rotation at LSU and B) none of the doctors or nurses would say when I'd be discharged.<br />
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I finally received a visit on day #3 from Dr. Zhuo who came to "break the news" that I had relapsed. The leukemia that I thought was retreating had come back in full force. I was once again alone in a room with a doctor as they delivered devastating news. She quickly ran through why this may have happened but I've got to be honest the only thing I wanted to hear was what the game plan was. What do we do right now? When can I start chemo?<br />
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She was full of talk but none of it seemed like solutions or a plan of attack. She left my room and I began the litany of phone calls. First to Jon, his mom and my parents. It was a mixture of disbelief and a strong sense of "lets lace up our cancer ass kicking boots and get back into battle mode". <br />
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I wish I'd have had my computer with me during the entire 33 days that I was in LSU getting chemo, fighting the red tape and ridiculous bureaucracy of trying to qualify for Medicaid, enduring bone marrow biopsies, finding out that I need a bone marrow transplant in order to beat this and save my life, then finding out that I'm in a hospital that doesn't provide this treatment and finally having everything come together in the most amazing and unexpected way to get me to where I am now.<br />
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I've got a lot of catching up to do with you all. Over the next few days and weeks I hope to get you guys up to speed with all the bitter, crazy, funny and purely ridiculous stuff that's been going on in my absence of writing. From realizing I'm going to be leaving my little LSU nursing family to go back to Tulane for the remainder of my treatment, the surprise of my sisters arrival to spend a week with me, being stuck by a nurse at Tulane and my sister passing out stone cold in a moment we call "playing possum", the amazing kindness of complete strangers that exceeded my families dreams in a fundraiser planned by a very dear friend, another complete surprise of my dad coming back in to surprise my mom for their 24yr anniversary, welcoming my mom back to live with us indefinitely and the musical sleeping status of our 11yr old daughter....there are so many stories to tell and I look forward to sharing it all with you.<br />
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So keep checking back and tuning in to "Life in the Land of L" because the funny never stops even when everything in my world seems to be crashing down around me. And I am so damn grateful for that.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-75191955142603876732011-02-28T21:11:00.000-06:002011-02-28T21:11:34.083-06:00The dollars and sense of it....Today my husband came home early from work for the first time in almost a year. I would've loved to think it was to spend more time as a family but unfortunately that is not our reality of late. With my diagnosis, the loss of my income and the added cost of medications, gas back and forth across the lake each week for appointments and the day to day expenses that just come with life Jon has had to take every opportunity to make extra money. What does he get for this extra hard work? Well this week it seems he's run himself down and ended up with a bit of exhaustion and the flu. <br />
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Before I dosed him with NyQuil and sent him to bed in a surgical mask he told me a little about his day. Particularly about a meeting they had at the dealership regarding health insurance. For those of you that don't know, or are just now beginning to read my blog my family and myself were uninsured at the time of my diagnosis. This, unfortunately, in today's economy and job market is not an unusual thing. Basically we gambled in order to cut corners to pay bills and other debt (most from past medical issues when I did have insurance) and just couldn't afford the nearly $1000 per month premium to insure our family of four. Not to mention what we would have paid out of pocket before meeting the $5000 deductible. Then of course there were the pre-exsisting conditions that would keep me uncovered but still paying premiums for the first year. <br />
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It was an expense we couldn't take on. It was a gamble that we took and on April 27, 2010 and we lost....big! <br />
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The first bill we incurred upon my diagnosis was for my ER visit to Slidell Memorial which was just over $16K. Then there was the 28 day stay at Tulane Medical for just over $335K. At that point, with discharge from Tulane looming on the horizon and no idea where or how I was going to pay for the treatment I'd already received and the remaining care needed to save my life our thoughts turned from cost to pure survival. <br />
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Jon felt defeated. <br />
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As if he had let the family down. As if his decision to make sure we had money to pay our mortgage, utilities, car notes, feed our family, etc had somehow been made only by him. He immediately felt immensely responsible for the scrambling that both mine and his mother took on to find a way to get government assistance or search for some program that would assist us with my treatment. <br />
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We didn't have to look far, although now looking back I don't know where I pulled the energy from to jump through all the hoops they put in front of me to achieve the little gold card for a program called Free Care from LSU/Charity Hospital. I had tried for Medicaid and was successful in qualifying for what is called the "spend down" program. This plan looked at our income and earning potential then matched it against our medical debt accrued for a particular time period. Seeing as I had already amassed closed to $350K, I was a shoe in. The celebration that broke out when I got word of the coverage was almost as jubilant as when I found out my first bone marrow biopsy came back clean.<br />
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Qualifying meant that the close to $350K owed would be whittled down to just under $8K that I would ow for the care received from diagnosis until the end of June. The joy over the Medicaid though lasted for all of 3 months. After June 30, 2010 my coverage under that plan and the prescription drug assistance that came with it was canceled due to my income being too high. Since I had qualified for the Free Care program through LSU/Charity Hospital where I was receiving all of my treatment I, in the eyes of the Medicaid office, had no medical debt to match against the piles of money they said Jon was raking in. <br />
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I felt like we were in a free fall and had no idea where this would leave us.<br />
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Once again, Jon (for reasons that I think only a man who has a family that is dependent on him can understand) felt as though he had failed me once again. Funny how my husband who bust his ass 7 days a week feels defeated over working too hard and there are people that sit on their ass all day collecting government aid, food stamps and get full Medicaid benefits. While we are left deciding what medication is truly necessary to my survival and weighing that against what bill is due when and how are we paying for groceries.<br />
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It's a broke down system.<br />
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Your punished for being upstanding, tax paying individuals but if we quit our jobs and contributed nothing we wouldn't have to worry about where or how I'd pay for treatment.<br />
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So today he went in to work with a fever, feeling like crap, hacking up a lung and probably spreading it to all his co-workers (sorry guys) because that's what he has to do to provide for us. Around 10am the guys were called into a meeting about open enrollment for health care. As usual they were given no time to take it home and discuss it with their spouses or check into which option would best suit not only their health needs but also what they could afford financially. Jon said after just one look he knew that once again we would not be able to handle the premiums. <br />
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They had gone down from the last meeting at this time last year but were still just over $900. The agent running the meeting brought up the fact that the General Manager was surprised by the fact that only 20-30% of the employee's at this dealership had elected health care coverage in the last round of open enrollment and it didn't seem as if that number would be going up after today's meeting while other dealerships in their corporation showed 60-65% of employee's with coverage. He asked if anyone was willing to share as to why that was.<br />
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Not one to shy away from speaking his mind Jon put his hand up and when called upon said simply, "when it comes to choosing between paying for this or my mortgage I'm going to choose my house". Jon said the agent thanked him for his honesty and the meeting let out. After heading back out into the shop to work on another vehicle Jon had no less than 7 other employee's come up to him and echo what he had just said. The cost of health care, given these economic times, is just too high.<br />
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I would say it's hard to believe but I'm living it every day. <br />
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I am grateful that there is a program available like the one through LSU/Charity Hospital. I am eternally grateful that the doctors and nurses there, along with the cooperation of my immune system, body, mind and soul, have gotten me to remission. I am saddened though because I know that I can't be the only person that has to struggle through this maze of bureaucracy and ridiculousness that is our health care system.<br />
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Health care is the only service provided where you cannot get a standard price up front prior to treatment. I know because for the years prior to my diagnosis we payed out of pocket for every appointment, test, procedure, x-ray, etc that we had and attempting to get a price out of health care facilities was about as hard as the U.S. Armed Forces trying to pinpoint the exact location of Osama Bin Laden. <br />
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It's sick and disgusting that we as a Nation of consumers have allowed this sector of commercial enterprise have so much power. Maybe the argument shouldn't be so blindly focused on the issue of Universal Health Care but on how health care providers, pharmaceutical companies, health insurance and the entire health care industry as a whole needs to be reigned in. If I'm gonna buy a house I know the price before I sign on the dotted line but if you want to perform surgery to remove a diseased organ or give me medication to help save my life you can't give me a price for that service?? Ridiculous and disgraceful.<br />
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I can't make sense of any of it. And that's my two cents, for what it's worth.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com2tag:blogger.com,1999:blog-4922258437973431881.post-86452154456703981332011-02-16T23:23:00.000-06:002011-02-16T23:23:31.453-06:00Going from bad to castor oil.....this is how you rock Valentine's Day in the Land of "L"!<div class="separator" style="clear: both; text-align: left;">In an effort to be compliant with my new GI doctor and his "let's cross all the t's and dot all the i's" mentality of trying to find out why I've spent 2/3 of my day nauseated, vomiting and in gut wrenching abdominal pain (could it be the enlarged spleen....maybe??) for the past 4 1/2 months I spent my Valentine's Day eating water based foods (pass the jello and watermelon) until 7p and then having to down a cocktail of castor oil and orange juice to "cleanse" for the upper GI series the following day. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Sure I could have written about the experience of downing the castor oil...but how fun would that have been? So in order for you to really understand the <strike>hell</strike> fun that myself and my family endured I decided to let Jon document the experience. Enjoy my suffering.....</div><div class="separator" style="clear: both; text-align: left;"><br />
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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilvCjaQ4ihXP6q_Jw9tI-fwaN-bRKyoEt0DxEV8cLDROWIPyTLIc-2lHUkLaw0bul2GM_G6Od37T8hinNi7bVwBm4CyOExADK0t8shyphenhyphenJhoaRpSBZtz2kfUrTmtr7TJIreirpwCys8wVX8/s1600/213to2142011080-1-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilvCjaQ4ihXP6q_Jw9tI-fwaN-bRKyoEt0DxEV8cLDROWIPyTLIc-2lHUkLaw0bul2GM_G6Od37T8hinNi7bVwBm4CyOExADK0t8shyphenhyphenJhoaRpSBZtz2kfUrTmtr7TJIreirpwCys8wVX8/s320/213to2142011080-1-1.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPN3H8JkzXSz-RkpmDDf1UbgwnF0Qp7pMeY9bc6LAkLy-5sC_UxnM-aBtxjIYMKtPJVsQRjdA3ZaYNx8Uipq8PHZNsg4mSdvtnQ4m8opA2zbYadAXEpdUlnYsFg3t793hVGbRIQArt_Lk/s1600/213to2142011088-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPN3H8JkzXSz-RkpmDDf1UbgwnF0Qp7pMeY9bc6LAkLy-5sC_UxnM-aBtxjIYMKtPJVsQRjdA3ZaYNx8Uipq8PHZNsg4mSdvtnQ4m8opA2zbYadAXEpdUlnYsFg3t793hVGbRIQArt_Lk/s320/213to2142011088-1.jpg" width="320" /></a></div><div class="separator" style="clear: both; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAheOdhe9MDf-7P0u4XOEQnH2MMW8734zfVFoPONuoZZLmVbjJ7WFJJvm5Y4VdLA5bnSlq5b8lEi4OQ599uFeXRTXlKjaTuVxXF5GGkhAeetVHgxZzMOJ8uhKvaAMzhK8SgWjJn9UuzB4/s1600/213to2142011093-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAheOdhe9MDf-7P0u4XOEQnH2MMW8734zfVFoPONuoZZLmVbjJ7WFJJvm5Y4VdLA5bnSlq5b8lEi4OQ599uFeXRTXlKjaTuVxXF5GGkhAeetVHgxZzMOJ8uhKvaAMzhK8SgWjJn9UuzB4/s320/213to2142011093-1.jpg" width="313" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRVGXcDzKKMwsX9Ldg1btBTz_NPgtPfkYpwFPgMsSvyJeGLtg5biG-8dL2cmm4yiXX363qmD89vlMRSpS20t2bZR-p9RSrYXZMen1U0_OjOOUJ2owRzLsuejOxmczCkOq2e2krINEHwMw/s1600/213to2142011094-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRVGXcDzKKMwsX9Ldg1btBTz_NPgtPfkYpwFPgMsSvyJeGLtg5biG-8dL2cmm4yiXX363qmD89vlMRSpS20t2bZR-p9RSrYXZMen1U0_OjOOUJ2owRzLsuejOxmczCkOq2e2krINEHwMw/s320/213to2142011094-1.jpg" width="320" /></a></div><div class="separator" style="clear: both; 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</div><div class="separator" style="clear: both; text-align: left;">And this is where the picture pages stop because I love you all way too much to make you endure any visual aid for what took place after the camera was put away. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">The test on the 15th went well and I am proud to announce that while I don't have the test results I did way better than I had done in the past. This time I neither puked on the technician or screamed at the radiologist. I just hope that this and the handful of other test I have left to do lead to me feeling better. Whether that will be with or without a spleen still remains to be seen.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-40776424051897238932011-02-09T20:03:00.001-06:002011-02-09T20:06:03.295-06:00My coping mechanism is busted....If I ever believed that the hard part was over now that I'm a full 4 months into clinical remission....I was sadly mistaken. The "hard part" is no longer marked with hospital stays or poor blood counts but instead marked with emotionally charged moments of crying inexplicably and wondering "what now" and "what's next". Some who have not been here would say...what next is to live your life.<br />
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Seize the day.<br />
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Take back the power.<br />
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Any number of things that can be stitched on a pillow or made into a bumper sticker.....<br />
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And to those well meaning people I give a very affectionate finger (you can choose whichever one you'd like) and I pull out the old adage, "until you've walked a mile in my shoes"...basically suck it!<br />
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For someone like me who relies on words to express myself, joke my way through the rough stuff and to just amuse myself its completely unnerving to find myself in a place of feeling my voice waiver. I'm finding myself sliding into the gray. Not the dark place that I resided in before my diagnosis. Depression has never "left the building" so to speak. Yes, the Prozac keeps it at bay but even in moments like these, that border just upon the delicate edge of that bottomless dark rabbit hole...I feel the swirl of uncertainty.<br />
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The doctors tell me that this is "normal". Maybe that is my problem....I've never thought of myself as "normal" so that could explain the foreign feeling. My mother tells me that given the fact that I had deadly chemicals pumped into my body every 28 days for 5 months that I should expect it to take at least that much time, if not more, to find a balance within my body once again. Ummmm....probably true, but how often have I listened to my mother in my lifetime? Yeah, I think I can count those times on one hand....or maybe on just a couple fingers. <br />
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I paste on a smile a lot because to be honest people really don't want to hear exactly how you're doing on the bad days. They don't want to hear about the uncontrollable bouts of pain that comes from organs that are pissed about the "side effects" to treatment and the fact that the doctors won't respond to their persistent attempts at making it known that they would like to leave the building...so to speak.<br />
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All I can do is move from one moment to the next in hopes that I will find my footing once again and perhaps stumble upon the gene or trait that gets me through this next phase without folding in on myself and pushing away the ones that love me most and root for me even when I seem to have lost my voice.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-81659078596227953672011-02-01T03:26:00.001-06:002011-02-09T20:08:11.188-06:00Penny's Thoughts on "Life in the Land of "L"<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div style="font-family: inherit;"><span style="font-size: small;">My dog Penny, aka my third child, has been a pretty permanent and recurring presence on Southern Fried Life so I am proud to announce her debut on Life in the Land of "L". Here's Penny's perspective on life with and owner who has Leukemia......</span></div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmtt7fXhcNz4lBERLEv8JjaouYb5jV1JOg5UkOIz4ZLDU29atxDH9Rbz6aX-V1iAEncw-c3xNNvRUR0tDFNw-trwnd4H9_eI93esZOLIYcgdPVb6lY3eN0GGT_spQ0AfiN6KBAVQUxCgc/s1600/003-5-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmtt7fXhcNz4lBERLEv8JjaouYb5jV1JOg5UkOIz4ZLDU29atxDH9Rbz6aX-V1iAEncw-c3xNNvRUR0tDFNw-trwnd4H9_eI93esZOLIYcgdPVb6lY3eN0GGT_spQ0AfiN6KBAVQUxCgc/s400/003-5-1.jpg" width="287" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">Yep...that bout explains it all.</span></span></td><td class="tr-caption" style="text-align: center;"><br />
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<div style="font-family: inherit;">I'm sure we will be hearing more from my very outspoken and in your face baby love Penny! Until then....I think I'll take the crown off so she doesn't use it to shank me. </div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-72563474419618280702011-01-30T04:43:00.001-06:002011-02-09T20:10:03.122-06:00Like all transformations that aren't surgically based...that took F-O-R-E-V-E-R....<div style="font-family: inherit;">You'd think my very first post of this new and REMISSION filled new year (I'm totally working that "if I say it or write it then it's true") would be about my health and the changes that are taking place in it. Ahhh ha ha ha....NO...it's all about how I just spent the better part of 3 hours giving "Life in the Land of L" a little 2011 face lift. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">No Botox. No Restalyn. No strange Angelina Jolie man those can't be your real lips lips.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">In case it be deemed that 2011 is the year of the new, improved and slightly look based Jessica...let me assure you that I am writing this blog in a most natural state....</div><a name='more'></a><br />
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</div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjML5BjOsG2P_oZRSkMBafdVhaLXWF2LstE6jsfR_uLXaq-0ypJC2GGLh7FuWglViwfx8EdPE6E4eCDc_-cHZYb-HhEq4s7c8qWIUDUJCma9zOBrZlJqwP4cSfXVVOWIwVAaSNGvd6eqVA/s1600/1.30.2011+-+writing.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjML5BjOsG2P_oZRSkMBafdVhaLXWF2LstE6jsfR_uLXaq-0ypJC2GGLh7FuWglViwfx8EdPE6E4eCDc_-cHZYb-HhEq4s7c8qWIUDUJCma9zOBrZlJqwP4cSfXVVOWIwVAaSNGvd6eqVA/s320/1.30.2011+-+writing.JPG" width="291" /> </a></div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"><br />
</div><div class="separator" style="clear: both; font-family: inherit; text-align: left;">....no, not NAKED...dang people this is NOT one of those types of blogs. I just mean that I'm void of make-up, rocking the glasses, wearing my favorite (and recent gift) Eeyore t-shirt....</div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: left;"></div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpGQGoiONMpTSB1d6CwtSxgMz29B4fRgECI6ecQcEf23cBb_ZY0afY-QTRnOX64xNhlrozawqUhBWHfYkyssdw44WZw7YeysjMoSImLGkovv0sG2JnfAUpavGINYZtYyHko8uaQGTA-8/s1600/1.30.2011+writing+at+4am+005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpGQGoiONMpTSB1d6CwtSxgMz29B4fRgECI6ecQcEf23cBb_ZY0afY-QTRnOX64xNhlrozawqUhBWHfYkyssdw44WZw7YeysjMoSImLGkovv0sG2JnfAUpavGINYZtYyHko8uaQGTA-8/s320/1.30.2011+writing+at+4am+005.JPG" width="301" /></a></div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: left;"></div><div style="font-family: inherit;">...(suck it Disney I'm not paying you to be able to post this pic) and a new staple all though not very trend setting or even remotely sexy....</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"></div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"></div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuXB4Qf9TGb6GjdSo1xmENrR5zIGs5meM-TWoeWYrlH0DAxM7hiUFG-kAPU2uGkwA8seL_JjWmlZ9ejX6OAdEzxB567r_bIv_H84uQUtrBPhX9Olmdu11fE3Roe1LTXY0YQF5ekw77KSo/s1600/1.30.2011+writing+at+4am+001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuXB4Qf9TGb6GjdSo1xmENrR5zIGs5meM-TWoeWYrlH0DAxM7hiUFG-kAPU2uGkwA8seL_JjWmlZ9ejX6OAdEzxB567r_bIv_H84uQUtrBPhX9Olmdu11fE3Roe1LTXY0YQF5ekw77KSo/s320/1.30.2011+writing+at+4am+001.JPG" width="239" /></a></div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: inherit;">...the slipper sock. Size medium and made to look like Mary Jane's (the shoe not the kind you smoke...seriously people...mind, gutter...remove it). Note the very pale skin that my husband, children, friends, family and mere passersby refer to as socks!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">So while my blog is now all decked out, I am still...as always...humbly...a borderline slob.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="separator" style="clear: both; font-family: Georgia,"Times New Roman",serif; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ18K9WEyr3D1CAH6E0yWZaprdoi2dSyUZ3T3FvPm_hyphenhyphenvwRTcWHAA_c0oyX_FQqsTAoQDkcCoewiknDcwzJ7MatDLho4mS-x08QlTNh8Brea66Ujxpg6jzI9xXxtXoPmWxvVLLY5d3FcE/s1600/1.30.2011+writing+at+4am+008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ18K9WEyr3D1CAH6E0yWZaprdoi2dSyUZ3T3FvPm_hyphenhyphenvwRTcWHAA_c0oyX_FQqsTAoQDkcCoewiknDcwzJ7MatDLho4mS-x08QlTNh8Brea66Ujxpg6jzI9xXxtXoPmWxvVLLY5d3FcE/s320/1.30.2011+writing+at+4am+008.JPG" width="193" /></a></div><div style="font-family: Georgia,"Times New Roman",serif;"></div><br />
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<div style="font-family: inherit;">With hair that looks a little like <a href="http://www.google.com/imgres?imgurl=http://msbush.wikispaces.com/file/view/don_king.jpg/58654816/don_king.jpg&imgrefurl=http://msbush.wikispaces.com/Don%2BKing&h=488&w=480&sz=14&tbnid=cH4Iwez9ABCVUM:&tbnh=226&tbnw=223&prev=/images%3Fq%3Ddon%2Bking&zoom=1&q=don+king&hl=en&usg=__y0IGL3_J8_ODxn5Cerm_iKJTuXs=&sa=X&ei=Nz5FTZm-FszTgAe59J3kAQ&sqi=2&ved=0CC8Q9QEwBQ">Don King</a> or possibly <a href="http://www.google.com/imgres?imgurl=http://www.batesline.com/archives/2010/10/19/Nick-Nolte-Mugshot.jpg&imgrefurl=http://www.batesline.com/archives/2010/10/clueless-sots.html&h=274&w=286&sz=49&tbnid=Zw5xskKXIHl1UM:&tbnh=110&tbnw=115&prev=/images%3Fq%3Dnick%2Bnolte%2Bmug%2Bshot&zoom=1&q=nick+nolte+mug+shot&hl=en&usg=__7N9x01YdOrm6ERnbHMJA4NgPqJQ=&sa=X&ei=ZT5FTc2EDcH38Abbyr3PAQ&ved=0CCEQ9QEwAw">Nick Nolte's</a> mug shot circa 2002. You can pick whichever...I won't be offended. I'm actually quite proud of it's growth considering how little sunlight I allow it. Thank God hair is not like children or else I'd be as bald as I was the day my mother took clippers to it.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">But enough about me...I hope everyone likes the new layout, colors, text, photo's and yes, I do realize that a blog is nothing if it doesn't have any recent post. But come on...cut me some slack people. Stare at the pretty colors for awhile and I promise (like all the <a href="http://lifeinthelandofl.blogspot.com/2010/09/its-comingi-promise.html">promises</a> I've made and NOT kept in the past...and this time I'm not even attempting to attach a<a href="http://lifeinthelandofl.blogspot.com/2010/10/dont-make-promises-you-cant-keep-but.html"> time frame</a> to the sure to be broken promise) I'll write again real soon.</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-43530708642015103242010-12-13T06:00:00.012-06:002011-02-09T20:11:06.187-06:00This...that...and my mother!<div style="font-family: inherit; text-align: center;"><div style="text-align: left;"><span style="font-size: small;"><b><u>August 1 - October 13, 2010 </u> </b></span><br />
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<span style="font-size: small;"><span style="font-size: small;">Once again, I've fallen behind in my posting and I really wanted to share this with you guys. Hope you enjoy and hopefully in 2011 I can get on task with writing on a regular basis....here's to hoping.....</span><b><br />
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<span style="font-size: small;"><b>"Damn you cancer and your ability to sap my energy, steal my will to wear things other than pj's and taking my hair and then letting it grow back with what seems to be a permanent bald spot front and center! But mad props for the weight loss...haven't been this size since 2004!!"</b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I know that it has been a long, long, L-O-N-G while since posting and I had said somewhere either in a past post or in my chemo induced brain fog that I wouldn't cease to post and in a sense "let the cancer win". I apparently had <b><u>seriously</u> </b>underestimated exactly how tired one gets in the actual moment to moment battle against a disease that is hell bent on destroying me the way that I destroy jewels in my beloved time passer Bejeweled Blitz.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">It's been a wild and crazy ride since the post at the end of July. <a name='more'></a>I welcomed the very anticipated return of my mother and Hannah. With Jon working wild crazy hours (leaving the house around 7:30a and not returning until 10p or sometimes 11p on any given day) close to 6 days a week, every week and him having to run our unlicensed teenager everywhere that one teenager needs to go at any given moment leaves very little time to care for a wife who at times needs assistance making it the 50 feet from my bed to the bathroom. And when all your consuming in a 4 hour period is about 4 bottles of water you can imagine how many times this little lady has to make a jaunt to the potty.</span><br />
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<div style="text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="text-align: center;"><span style="font-size: small;"><b>"I've come to realize that cancer has made my bladder revert back to the holding capacity of a 2yr old. And it has sucked up any logical thinking and reasoning skills. So when you add in the loss of being able to drive AND the loss of bladder function I've definitely become someone who needs her momma. "</b></span></div><br />
<span style="font-size: small;">If I'd thought cancer was going to be a real nuisance I should have also thought to take into consideration that due to the powerful narcotics that I've been downing in a vain attempt to keep the wrenching pain in my spleen and some of the other phantom pains at bay made it so Jessica + driving were two great taste that unfortunately did not taste great together. And for all those people's lives, plus my own that I've saved in making this decision YOUR WELCOME SLIDELL and NEW ORLEANS!!</span><br />
<br />
<span style="font-size: small;">I'm thinking there is a definite frowny face given by law enforcement officers to patients or people such as myself that slap on a heavy duty opiate patch and then suck down enough oral narcotics to sedate an elephant just so that I can go run a few errands and taxi my kids all over hell and gone. So that just added to the stress on Jon's shoulders day in and day without my mom's assistance. The first two days were ok. But by day three I wanted her back. Jon says he didn't start to feel the stress of not having her around and then wishing she would be back until about week two, but I think he is just trying to make it seem like he's a super macho guy. When I'm pretty sure by the end of day one when he had to deal with me vomiting, needing help showering, needing something to eat 7 to 8 times in a day because all I ate was a bite or 2 at a time so I had to eat tiny meals about 8 times a day.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">My mom had left</span><span style="font-size: small;"> on June 13th with Hannah in tow for some time back at home in Georgia with my dad and sister. Not to mention she needed to go and see her own slew of doctors for her diabetes and other health related issues. My mother called everyday sometimes more than twice a day to make sure that I was well and being cared for the way that she had been carrying for me. I had to lie to her a lot of times because A) I hated having her worry and B) no matter how Jon or anyone tries they won't care for me the same way my mom would've if she was still here.</span><br />
<span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Short of having to change my diaper which <b>NO</b> I have not resorted to those but <b>YES</b> I have actually contemplated it when I became so flippin exhausted from a trip to the bathroom that I actually pulled up the bathmat, turned it into a pillow and plopped down next to Penny to nap before crawling....yes you read that right...CRAWLING back to my bed and then climbing in. I was so exhausted from the crawl and climb that I actually left Penny on the floor for a good 20 to 30 minutes before assisting her tiny hind end into the bed. That was the longest she's ever been neglected since I've been her mommy.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Sadly my dog isn't the only child I've been neglecting. The fruits of my womb have had to learn how to fly solo or rely heavily upon their dad or grandparents. And on very rare and undocumented occasions....they've had to rely on one another. It has not ceased to bother me that this has become the norm as of late but slowly I am getting to understand that my needs have to be put first more times than not. Ugh....that was physically painful to write. While I used to tout that the world should revolve around me as a teenager and at more moments in my marriage than I'd like to admit, it is really hard to come to terms with the fact that this is an actual requirement in order to get back into fighting form where the battle is conquering life and not a disease that is trying to steal it and conquer me.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"I've got my mommy....I'm ready to roll. Seriously...get me an IV pole and let's do this!!"</b></span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">With my mom back in the house and the start of the new school year just around the corner we all made a valiant effort at having as scheduled a life as possible. There was a method to the madness of clinic visits, PICC maintenance appointments, blood work, ER visits and hospital stays for chemo or any other reason. It seemed that as time went on we were having no issue taking care of the parts that meant getting me better. However, a huge problem that we've all, meaning me, Jon, the kids, mom, mother in law and those within my inner circle have had to come to terms with is making what I would deem "hard and fast plans" to do any number of things for fun or as a family. We'd try to plan something just to get our minds off of treatments and then <b>B O O M </b>I'd start to feel yucky or I'd come back with bad counts meaning I'd need a transfusion or worse a hospital stay due to becoming neutropenic. </span><br />
<br />
<span style="font-size: small;">You've got to hold fast to hope and be optimistic when something like this blindsides you and literally takes this life you've been creating and living and just flips it upside down and you can't stop the world or the events of the day to day grind in order to get all your pieces back where they need to be and restore some feeling of normal. NO...you just have to pick up what you can and keep moving. While in the hospital in July undergoing my 2nd round of consolidation treatment I made a silent promise that I would try hard to regain some kind of control of this disease and be able to not miss out on the things that are important to the ones that I love. </span><br />
<br />
<span style="font-size: small;">Although I have gone into the treatment for my AML with the mentality of "I will give you 6 months or a year of being a human pin cushion, pumped with chemicals that could just as much kill me as they could cure me. I will give you my hair and the healthy shimmer to my skin. I will give you my energy, what little I still have. I will allow you to reside inside me until the last round of chemo ekes you out of every nook and cranny that you may have thought was my bodies version of Switzerland with it's no extradition policy for murderers. I will begrudgingly hand over my precious moments of making memories with my family during the 6 months to a year that the doctors said it should take to get me into clinical remission. And then when that time is up I will give you 1 day every 6 months for the next 8 years of my life where my world will stop being about those around me and will be focused on making sure you have not found a way back into my body because you have now overstayed your welcome. I will NOT however, under any circumstances let you have my life. You are NOT going to be the death of me, no matter how you try. I will fight you harder than I have ever fought any one or any thing. I may be out of shape but I am tenacious. Do you hear that tick-tick-tick? Yeah...that's the clock that's telling you your reign is just about over!"</span><br />
<br />
<span style="font-size: small;">As my next chemotherapy loomed in the very near future around August 9th, which was the day the kids started school, I was excited because I felt as though I was doing well enough that there would be no issue that would keep me from missing seeing them, going to breakfast all together as a family and then dropping them off for school. Hannah going into 6th and Olivia into 11th. The other upside to when this round would be scheduled to start and the amount of time I would need to be in the hospital all fell perfectly with when we were planning Hannah's 11th birthday. Getting admitted and starting chemo around the 9th would allow me to get in, get treatment, have my post treatment in hospital recovery and allow me the 3 weeks of exhaustion and down time that routinely follows the high dose cytarabine (aka drug that sucks the life out of me and keeps the cancer from killing me)<b> </b>before the arrival of Hannah's big day. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">After having to miss out on Olivia's 16th birthday at the last minute because the bone marrow and my counts were showing that my immune system and body itself were at the time point where my doctor felt it was imperative to go ahead with the next round of chemo, because in her broken English "no wait time good....leukemia come fast if wait" translated into BITCH you better go get your damn chemo!</span><br />
<br />
<span style="font-size: small;">As my doctor saw how heartbroken I was at the fact that I was going to miss such a milestone in my daughters life she tried to put it in gentler more motherly words "miss a birthday or celebration now to beat this leukemia and not miss more milestones later....your children be sad if they had to bury you on their birthday". Well gosh Dr. Z when you put it that way....how the fuck can I refuse?</span><br />
<br />
<span style="font-size: small;">Let me tell ya...when you are one that gives out your opinion or advice without "sugar coating" you don't feel the sting and sometimes you don't even feel bad for saying something that may hurt of offend someone if in the end it will help them achieve or fix something in their life. Getting this said to me, devoid of the "sugar coating" and in an accent that constantly makes me want to say "it's a purse...k" (like the Asian guy in The Hangover") well it was a little hard to swallow and made me want to laugh inappropriately.</span><br />
<br />
<span style="font-size: small;">Here I'd thought I'd reached my limit of having to suck it up and for lack of a better term "put on my big girl panties and deal". I mean Jesus...it's cancer. Running a muck in my body. I think that should be enough of an adult experience for one year and everything else should be easy peasy lemon squeezey! But I had to repeat putting on my "big girl panties" time and time again. </span><br />
<br />
<span style="font-size: small;">The list of what was missed in the month of July is as follows:</span><br />
<br />
<span style="font-size: small;">1) Admission for my 2nd round of chemo, July 9th - 19th: spent my 12yr anniversary in the hospital and missed Olivia's entire run of "School House Rock" which she sung her very first solo as well as opening night to see her in a performance of "Joseph and the Technicolor Dream Coat".</span><br />
<br />
<span style="font-size: small;">2) Unable to go with Jon and Olivia to pick up Mom & Hannah in GA so I could visit with my sister and dad.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">So I'd already devastated my oldest daughter, my husband and if I didn't get this next round of chemo on schedule I would run the risk of putting Hannah in the hot seat of emotional let down. Cancer is nothing if not an equal opportunity life ruiner!</span><br />
<br />
<span style="font-size: small;">But, as always, we had survived the emotionally devastating, for me it seems more than others, but that Olivia seemed to just roll with not being able to have me there for her 16th birthday. A huge help, I think, was the fact that Allison (my BFF for 30 years) would be the pseudo mom for the event. From her home in Atlanta she took over all of the planing and made sure that everything was handled. The she drove in from Atlanta after stopping in Alabama to pick up another of our childhood friends, Tammy. </span><br />
<br />
<span style="font-size: small;">She planned the party with my daughter. Handling invites. Baking her cake from scratch which was a first time multiple tiered cake for my pal that could seriously start her own party planning business and making memories that will last Olivia a lifetime while capturing them all on film before making the 40 minute drive to share it all with me in the hospital. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">When I had gotten a rough time line on how my treatments were going to go following my big miss of Olivia's birthday in June I began making plans for not having to miss another daughters birthday. August 8th came along and we'd began to make a rough draft of party plans after a weekend of feeling pretty damn good. These moments that are few and far between are the only times that I feel as if I am somewhat normal and not being all consumed by AML.</span><br />
<br />
<span style="font-size: small;">My mom and I had looked at a calendar and counted out how many days I would need to recoup from this upcoming round to make sure we had planned Hannah's 11th birthday party just far enough out so that there would be no way that it would be postponed, canceled or worse....party without the mom! </span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">NOT.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">GONNA.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">HAPPEN!</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">We had made sure that I was stocked up on pain and nausea meds as well as all the other goodies for the party. We were able to figure that if I started chemo anywhere between August 9 thru 13 that it would allow plenty of time for her party that was being booked for October 2nd. </span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">Feeling a sense of empowerment over having a plan of action regarding this next phase of treatment made a sense of calm fall over the house and each of us began to breathe a bit easier. Having energy on that Sunday evening just days away from when I'd be due to go in for the next, and possibly last round of chemo, found me to be just shy of giddy and getting to enjoy a dinner with my family was the cherry on top of my seemingly perfect weekend. After I finished my dinner I made the trip down the hallway to use the bathroom and then the bottom fell out of my normal weekend. Within the span of 30 minutes I went from peeing to being crouched on the floor in massive guttural pain when I felt a sharp pop in the right temple area of my head. I fell to my knees and began crying out for help as my vision clouded and it felt as if a hot poker was being shoved into my ear. I didn't know how loud I was yelling because all I could hear in my ears was my heart beat. At some point it had to have been extremely loud because I remember my mom kept trying to pull me close to her and put her hand near my mouth in an attempt to make me lower my voice or perhaps suffocate me. </span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">She calmed me down just enough to get me to find my doctor's number in my phone. I dialed it after several minutes struggling to find the number with only one eye barely opened and then had to deal with my mother shaking my Crackberry like it was some kind of futuristic device or an Etch-A-Sketch and not an actual phone. You have no idea how much I wanted to smack her in the face with my phone when for 5 minutes every other phrase she uttered was "I don't know how to use this" or "why can't you just get a phone...like a phone phone...not this computer trying to be a phone kind of phone". </span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">It went a little like this:</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">ME: Mom, I need you to call the doctor's pager, put in my number and when she calls back I'll need you to speak with her because I feel like I can't hear anything other than my heartbeat banging in my ears. Ok?</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">MOM: I know how to page people. Your father wears a pager. </span><br />
<br />
<span style="font-size: small;">ME: Ok mom...ok....just call the doctor.</span><br />
<br />
<span style="font-size: small;">MOM: Well, fine....but I don't know how to use that (she points in the direction of my Crackberry as if she is pointing to a steaming pile of shit)....I mean seriously Jess, why can't you get a phone phone and not this computer trying to be a phone kind of phone....it's confusing to me.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">ME: Ok, mom....well, it's not confusing to me, so can you just focus for a second and hit the call button now that I found the number and it's on the screen.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">MOM: Um. What. Huh? How do you make an outgoing call with this computer phone thingy?</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">ME: Mom...you just push the green phone looking button. It will ring then beep three times and you will need to put in my cell # including the area code and then hit the # then hang up.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">MOM: You don't have to talk to me like I'm stupid. I know how to use a phone! And I know how to page someone!</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">ME: Mom I am very aware that you know how to use a phone and how to page someone.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">MOM: Well you talk to me like I'm stupid. It's no my fault that I'm not up to date on all this technology stuff.</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">ME: (feeling like I'm hearing her voice through an ocean of water sounds mixed in with the extremely loud beating of my heart) Ok mom....I'm sorry....can we please just call the doctor?</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">MOM: Fine. Of course we can call the doctor. We could have been calling the doctor earlier if you had a normal phone and weren't accusing me of being unable to know how to page someone....</span><br />
<span style="font-size: small;"><br />
</span><br />
<span style="font-size: small;">I don't think I had ever been so damn grateful for the fact that I could barely hear what she was saying to me and I wasn't able to keep my eyes open so I didn't have to deal with any hurtful mom glance. It was a win/win situation, well until we got my doctor on the phone.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Why do I have to have a doctor that feels the need to ask me whether I've had blood in my urine <u>EVERY</u> flipping time I call with an emergency type situation that has ABSOLUTELY nothing to do with that damn region of my body?!?"</b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Now that the peace had been disrupted and I had received word from my doctor that I needed to go to the ER<b><u> immediately</u></b>, I hurriedly put together a bag, managed to shove my feet into some slippers (purple fuzzy ones that resemble flip flops...did I mention they were fuzzy) my mom slid behind the drivers seat and Jon buckled me into the passenger seat with a kiss on the cheek and a puke bucket in my lap as I held a towel over my eyes trying to shield them from the light that seemed to make me feel that my eyes were being gouged out by lasers. He asked real quick if I'd rather him take me and leave my mom home with the girls, but I said no seeing as he had to work the next day and God himself probably couldn't predict how long we would be sitting in the ER.</span><br />
<br />
<span style="font-size: small;">I tried to crack a smile and give him a tiny peck on the cheek. It was an awkward attempt at best and it failed miserably because opening my eyes made my head hurt more and half the kiss ended up going on the frame of my door. I moaned the entire drive and periodically exclaimed that I was going to either pass out, throw up or fall asleep. I'm pretty sure my mom would have liked any of those options except maybe the puking purely for the smell factor She was racked with anxiety making the drive over to University Hospital. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><b><br />
</b></span><br />
<div style="text-align: center;"><span style="font-size: small;"><b>"I'm fading fast and I have the sneaking suspicion that if I pass out right now that somehow I would end up falling face first on to this germ ridden linoleum floor and my mask would pop off allowing my tongue to hang out and touch the floor and I'd have to undergo a Silkwood scrub of the interior of my mouth."</b></span></div><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">My mother pulled into the Emergency Room drop off area and I had to fish out a mask since I was pre-warned by my doctor, after she finished her incessant questioning about my urine, that my counts may be low therefore opening me up to a slew of possible infections due to airborne germs. I donned my mask, grabbed my purse and made a shuffle to the door. My mom had to park so I was flying solo as I maneuvered my way around other patients in the ER waiting room. It seriously took me about 5 minutes to get from my vehicle to the door and I was heartbroken when there was no nurse at the check in desk. Luckily one made it just as my knees were about to give out and met my nearly falling fanny with a wheelchair. She had to complete the check in process and save the signature for my mother because by this point I had barely any vision remaining. </span><br />
<br />
<span style="font-size: small;">How I actually believed that I would get to the ER, get a few fluids, possibly a blood or platelet transfusion, a CT of the head to rule out any major issues, something to ease the pain and then be upon my merry way home in order to ring in the new school year with my kids the following morning as I had done every first day of school since their school aged existence. And then somehow be able to maintain the originally set schedule of being admitted for this next round of chemo, which would be tomorrow (Aug 9th) or later on this same week was a true testament to how completely deranged I've become while dealing with this cancer?</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I was checked in and whisked back to a curtained gurney/bed within 10 minutes of hobbling into the ER. A little ER tip from me to you....wearing a mask when you walk into an ER will get ya handled a lot quicker than without. Oh sure...it may be the bald head, PICC line in my arm, bruises covering 90% of the visible parts of my body and admittance of just undergoing chemo less than 30 days before, but I'm really thinking it is the mask. We had gotten to the ER just a few minutes after 7pm.</span><br />
<br />
<span style="font-size: small;">By 2am I had to realize that I wasn't going to be going anywhere that wasn't within the confines of the hospital walls anytime soon so I made the decision to send my mother home to try and get some rest and if...big IF...I was able to just be discharged from the ER then my MIL could come and be my escort home, hopefully in time to see my kids off to school...fingers crossed, since she'd be up and about around 6am. The gamble paid off, but not in the way I had wanted or planned. Mom got to go home and sleep and I got to be admitted. </span><br />
<br />
<span style="font-size: small;">Not a huge deal seeing as I'm no stranger to having to be hospitalized. What shocked me was that I was not being admitted due to a neurological issue (bite your tongue and reserve your mental case comments) as I had thought because I had gone to the ER with a headache. I had been carted to and from CT twice so when the doctors told me I was being admitted in what the doctors cautiously classified as the "possible early stages of liver failure"....I was dumbfounded. I'm sorry....but WHAT IN THE HELL?!?</span><br />
<br />
<span style="font-size: small;">After that shock began to wear off I became <u><b>EXTREMELY</b></u> worried. Yes I had been dealing with the issue of a failing spleen since this whole Leukemia crap began. But you can live without your spleen. So I always know in the back of my head that unruly spleen would most likely end in spleen being removed. No harm. No foul. And hopefully, God willing....spleen out will equal NO MORE PAIN!!! But my liver. Uh....yeah....I'm gonna be needing that to oh, I don't know....SURVIVE!</span><br />
<span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Ummmm.....liver? Huh?? What??? Huh?????"</b></span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">So instead of gearing up for my next scheduled round of chemo I landed myself in the tailspin of "name that cause". Residents, med students and fellows seemed extremely puzzled at what could possibly be pissing off my liver in such a way as to spike my liver enzyme level to the "danger zone" (their words NOT mine) of close to 1100 when they are usually between 16 to 100. Their real worry, as if that wasn't enough, was the fact that I had just had a complete blood panel run on Friday, just a couple of days prior and my levels were well within normal ranges coming in at about 44. So what had happened that had pushed me into such a catastrophic position within 72 hours of that panel being drawn? </span><br />
<span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Their first area of concern was the blood transfusion that I had following the CBC on Friday. Their initial reason of concern was for me as a patient with Leukemia, which is a blood born cancer, having what they feared could be a possible reaction to a transfusion of blood products could spell disaster. If the leukocytes continued to devour the healthy cells and they would need to transfuse me with red blood cells or platelets and my body could neither tolerate or worse accept the products it could spell death because the chemo would kill off both the leukocytes and any healthy cells as well and transfusions are the only way to get my blood and my system as a whole back to a healthy station where it can begin to make these cells on its own again in healthy quantities.</span><br />
<br />
<span style="font-size: small;">The next area of concern was the discovery of very high acetaminophen levels meaning that my liver was not filtering out this chemical within my body. My decrepit spleen doesn't help the situation either which if it weren't all hell bent on causing me unyielding and excruciating pain it should be forming a "toxic filtration service" with my liver and pancreas rather than letting this medicine continue to build and build and build and now threaten my livers function. </span><br />
<br />
<span style="font-size: small;">I'm pretty sure part of why my spleen doesn't want to be a team player is because it hears my constant whining to my doctors, my nurses, my family and even total strangers that it is all my spleens fault. I am shut down by doctor after doctor after doctor that this isn't so bad and that "in time" it will settle down and no longer bother me. Even after repeated attempts of getting these doctors to elaborate on how much time are we talking about with "in time"...I've yet to get a straight answer. And at this point I am rounding 5 months of dealing with this nuisance!</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Hours turn into days and the levels of my liver enzymes begin to return to normal levels signaling that thankfully the cause, although still unknown, has not done permanent damage. </span><br />
<br />
<span style="font-size: small;">They think. </span><br />
<br />
<span style="font-size: small;">Possibly. </span><br />
<br />
<span style="font-size: small;">Oh for the love...will anybody be able to give me a 100% for sure about anything regarding my health? Well yes...they were willing to tell me that I was FOR SURE not going to be able to have chemo anytime soon. Apparently "almost liver failure" is one way to get out of having chemotherapy. Geeze, where was this little hitch in the road when I wanted to be able to be at home for Olivia's special day?!?</span><br />
<br />
<span style="font-size: small;">I'm sure it's wrong to wish for another ailment, but no one ever said I was right in the head!</span><br />
<br />
<div style="text-align: center;"><span style="font-size: small;"><b>"Well if you're not going to pump me full of chemo and your not going to remove my spleen, what are you going to do with me? Should I be worried that you look like your going to tell me something I'm not going to be happy to hear?" </b></span></div><br />
<span style="font-size: small;">The team of doctors felt that they should make the most of this "unplanned" hospital stay and get a few test out of the way. Me always trying to stay on the positive side of this disease thought, "hey...at least I will get some good meds in here". Unfortunately if they would have told me what it they were intending to do to me while I was hospitalized I may have found a way to fake that I felt much better.</span><br />
<br />
<span style="font-size: small;">Instead I got my next bone marrow biopsy out of the way (with sedation this time...yippee) and my first lumbar puncture (without sedation...dear God it HURT) that yielded results of clean across the board signaling that the leukemia cells were either non existent or of such a minuscule amount that they were unable to be detected even under a microscope.. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">The excitement of the news didn't get to last too long because I was informed that while clean marrow and spinal fluid results bring me closer to remission I still need to be very aware that the fact that I have acute myeloid leukemia means that these leukemic cells can reproduce from small amounts of cells to overrun my system once again, in the same rapid fashion that they had taken a hold of me the first time, so another round of chemo was still in my future in order to give me the best opportunity of attaining remission and hopefully not having any relapses. Of course when I asked the question of "when precisely, would I be able to have the next treatment?" Well, I'll just say that....hmmm, yeah...they weren't as forthcoming with that.</span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Obviously your version of soon and my version of soon are SO very, very different!"</b></span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">My "quick and painless ER visit" turned into a 6 day stay dealing with my liver, extreme bouts of nausea and severe upper left quadrant abdominal pain.<b> </b>And while we all took a moment, especially me, to celebrate the milestones I've reached at this stage of treatment with the clean bone marrow and lumbar puncture it never seems to be far from my mind that this is far from being over. <b> </b>Oh Dear Baby Jesus....I don't know if I can take much more. The ups and downs of emotions were only foreshadowed by the consistent ups and downs of my counts.</span><br />
<br />
<span style="font-size: small;">On August 14th I was discharged and got one day of rest at home before having to go back to the clinic for a follow up. I had prayed the night before my appointment and on the way to see my doctor. I prayed that when they draw my blood that my liver enzyme level continued to stay at a less dangerous level, because although I feel I've got the tenacity to dig in and fight anything that the Leukemia wants to throw at me, I'd sure like if I could just go through one visit without a crisis. </span><br />
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</span><br />
<span style="font-size: small;">August 16th - CBC & follow up with Dr. Z: counts are iffy, not low enough to need transfusion, liver enzymes could be lower but they are not near the danger zone</span><br />
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</span><br />
<span style="font-size: small;">August 20th - CBC & PICC line maintenance w/Ms. Theresa: Counts looking good. Fingers crossed for next eval with Dr. Z</span><br />
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</span><br />
<span style="font-size: small;">August 23rd - CBC & Eval with Dr. Z: counts are good but liver enzyme levels have climbed back up into the 900's</span><br />
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</span><br />
<span style="font-size: small;">August 26th - CBC & PICC line maintenance w/Ms. Helen: Counts are good. Liver enzyme's within normal range - CLEARED FOR CHEMO, due for admit Aug 31st.</span><br />
<br />
<div style="text-align: center;"><span style="font-size: small;"><b>"If I don't take time to celebrate the tiny victories I run the risk of going stark raving mad. So, yeah...that was me high fiving my kids because I was able to eat and hold down 2 pieces of pizza! You gotta problem with that?"</b></span></div></div><div style="font-family: inherit; text-align: left;"><br />
<span style="font-size: small;">I went back to my weekly PICC line maintenance appointments with CBC's and the finger crossing moments until the lab results would come back with counts either signaling a transfusion which meant NO CHEMO or finally </span><span style="font-size: small;">reaching a rebound point where I was able to get to the point of sitting face to face with my doctor and being issued a date to be admitted for the next round of chemo. My acetaminophen levels had gone down thanks to a change in pain medication and a strict rule to avoid any thing containing the medicinal ingredient in any dosage amount no matter how small. Which meant goodbye Tylenol, Aspirin, Excedrin, Naproxen, Ibuprofen, Advil, Motrin, Aleeve...etc. It also meant a change in my oral pain medications. Where before I was being given Lorcet, Lortab or Vicodin to help alleviate pain I had to be changed over to medications that did not carry acetaminophen, naproxen or any n-saids. That seemed all fine and dandy until 48 hours before I was due to be admitted and I spiked a fever of 102.9. I called my doctor to ask how I should proceed, extremely fearful that she would answer that I would be unable to go ahead with the chemo that was literally just 2 days away and WELL within my grasps of reality. </span><br />
<br />
<span style="font-size: small;">First, of course, she had to make sure I wasn't having blood in my urine....seriously, I need to know if this is something that I need to be fearful of with my diagnosis because she either A) meant to pick Urology as her major and in her broken English selected Oncology or B) I've missed the hidden danger of blood in urine in all of the information I have read on AML in the past 5 months in order to understand her extreme concern with this function of my body. </span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Trust me when I tell you that I had my uterus removed in 2004 if there was blood coming from that region I would be keenly aware that SOMETHING</b></span><span style="font-size: small;"><b> was happening that was no longer a normal function as of 6 years ago! Mkay? Let's move on."</b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I assured her there was no blood and once again had to calm my nearly frayed edges at what I have deemed to be a ridiculous question given my medical history. It's called a hysterectomy sweetie...look it up! </span><br />
<br />
<span style="font-size: small;">Finally she relented with the damn urine question and told me that if I was really concerned about the fever (which I think is pretty obvious because I paged my doctor....after hours...but who I am except the lowly patient with non blood stained urine and a 102.9 fever) that I could take Aleeve which she assured me had none of such a small amount of the evil acetaminophen that would surely anger my liver thus ending any possibility at getting chemo or as long as I had no other symptoms (again with the blood in urine question....seriously, if I could drink I would make a drinking game out of this verbiage kind of like the word veneer from Antique Roadshow) I could just let the fever ride and run it's course. I was so thoroughly freaked at the minor possibility that she could have been wrong about the Aleeve and the acetaminophen that I just let the fever run wild. And oh how it did. It ran with me all the way to my admittance in the hospital and helped play a part in delaying the start of my chemo for a full 12 hours making my official start a full 51 days from my last treatment.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Georgia,"Times New Roman",serif; text-align: center;"><div style="font-family: inherit;"><span style="font-size: small;"><b>"I know I don't usually ask for the anti-anxiety drugs this early on, but yeah....I'm gonna need those now. Oh...wait...your just the admitting rep...fine I guess I can wait until a nurse comes in."</b></span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I know I've said this about a billion times already. WHEN YOU GET CANCER THIS SHOULD BE THE #1 TIME IN A PERSONS LIFE WHERE THEY SHOULD BE GIVEN CART BLANCHE WHEN IT INVOLVES MEDICATION. It should be set up like a God damn candy store for cancer riddled patients to go in and just have their pick. Instead of the magical Willy Wonka/Pfiser/Kaiser Permanente/Eli Lily/Godiva filled utopia I've created in my mind where I can go to get Ambien for the nights I can't sleep, FentaNyl patch for the unrelenting pain of my enlarged spleen, Prozac for the emotional instability, Nexium for the acid reflux, Phenegran or Zofran for extreme bouts of nausea, Xanax for the anxiety and Oxycodone for the breakthrough pain. Instead I am left in a war of the words with care providers (ESPECIALLY my oncologist) that feel it's best for their patients to be lucid while puking up their insides, feeling as thought their bones are being crushed by some imaginary vice that has appeared out of nowhere and hops from one body part to another without cause or reason. I find that approach to be downright ridiculous and cruel. </span><span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">They come in looking all concerned as I am rolling about feeling like I'm smack in the middle of either being part of an exorcism or possibly on the brink of childbirth minus the epidural and launch into some prefab speech about how narcotics and opiates are going to cloud my mind and keep me from being sharp and focused. I get to a point where all I am hearing is "waa wa waa waa wa" like the grown ups in Charlie Brown and then I begin to fantasize about stapling their ear to the closest wall and asking them if they'd like to continue to feel that pain or maybe have something that could take the edge off of the discomfort.</span><span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Once we had dispensed with all the formalities of how this round of chemo was going to proceed which basically was a reread of the two previous treatments it was time to get the show on the road. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><b> </b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"The fact that this could be the LAST round of chemo I ever have to partake in is much more emotionally overwhelming then I ever imagined."</b></span></div><div style="font-family: inherit; text-align: center;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">As I sat in my hospital room being hooked up for the first of 2 doses on September 1st I was concerned with only 2 things. #1 - being able to get done on time (meaning being in the hospital no more than 7 to 8 days) and #2 - feeling better as fast as possible afterward so that we could prepare for Hannah's birthday. Every thing else...to me at least, seemed like it would take care of itself.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I trusted my nurses and doctors to take care of me just as they had on all my previous stays. On day #3 we hit a bumpy patch when my liver enzyme levels took a dramatic spike and my blood test came back showing a bacterial infection. They redrew and pulled from my PICC line as well as from my arm. A few hours later it was confirmed that my PICC line that had been put in back at Tulane on May 11th would need to be removed. I dreaded what would happen now because I was still getting chemo and would need another PICC or worse they would have to put another central line in my neck. But day #4 brought lower levels, a brand new and bacteria free PICC line,dinner from Jon and the surprise of my Dad coming from Georgia to spend time with me in the hospital. Days #5, #6 & #7 were laid back and relaxed as I had the remaining rounds of cytarabine without any real issue. Day #8 brought the end to my Dad's visit and no discharge for me due to extremely low WBC & RBC. On day #8 with platelets, WBC & RBC all where they needed to be I was discharged and Jon came to pick me up. We haven't had time alone with one another that didn't consist of him holding my hand while watching television as I drifted in and out of sleep from my medication or me groggily trying to listen about his day at work when he'd come home after working 16 hours.</span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">So when he offered to take me out to eat, just him and I seeing as I had just spent 9 days having meals that while nutritious weren't that appealing it took me less than 1/2 a second to say "HELL TO THE YES"!!!</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">We had a quiet but somewhat quick meal. And I think I savored the feeling of normalcy in that hour more than I did the food that I put in my mouth. Yes there were faces looking and whispers because of my bald head that I had decided not to put a hat on. That paired with my jeans that were about 4 sizes too big (being in and out of the hospital on top of not being able to drive myself anywhere or have the energy to walk around to shop coupled with my dramatic and continued weight loss made having clothing that fits very difficult) and my extreme pale skin made for some looks of pity and curiosity. I'm sure it may have helped if I would have removed my hospital bracelets, especially the bright green one that had "FALL RISK" scrawled across it in large bold black letters. But if I've learned anything from this experience I am not here to worry about those around me think. I'm here to be happy, healthy and finding the humor in everything. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Savor the good when it's there and hope that there is enough left over to sustain you through the times that are rough."</b></span></div><div style="font-family: inherit; text-align: center;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">After arriving home from my last round of chemo the only thing that I wanted on my radar other than my weekly CBC appointments and my next follow up with Dr. Z was making sure we had everything ready for Hannah's birthday. I had 24 days until her party and in between my discharge and the actual day of her shindig there were a few landmines that I needed to make my way through without detonating them, so to speak.</span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">September 10th - CBC & PICC line maintenance with Ms. Theresa: platelets low but Dr. Z said can skip transfusion because I am set to see her on Monday</span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Phew....made it through...1 down 2 more to go..... </span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">September 13th - CBC & Eval with Dr. Z: labs came back with dangerously low platelets, unable to see Dr. Z today because she wanted me taken to the hospital ASAP for 8 units of platelets. Have been advised that if I have any uncontrolled bleeding or the appearance of large bruises to go to the ER immediately.</span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Well that was a little too close for comfort....2 down 1 more to go.....</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">September 17th - CBC & PICC line maintenance with Ms. Theresa: was not feeling very well at all, feeling winded and dizzy, with no appetite and cold sweats. All counts came back dangerously low and I began bleeding profusely from my mouth. Theresa called Dr. Z and I was rushed to the ER (arrived @ 10:30a) and admitted to the 7th floor @ 9pm.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">BOOM....guess I didn't tread lightly enough....this landmine earned me a fabulous 6 day 5 night stay at the magnificent LSU Interim Public Hospital room #724.</span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"I'm either feeling VERY lucky or I've got a bad case of gas." </b></span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I was happily discharged on September 22nd a full 5 days from Hannah's actual birthday and still in just enough time to still be feeling well enough to attend her party. I was thinking happy thoughts. I was living in the positive. I was COMPLETELY the glass 1/2 full person and then I went to a follow up with Dr. Z regarding a large lump that had formed on my right inner thigh. The date was September 27th and before I even had time to think about what we could make for dinner that night to celebrate Hannah's special day the words, "you're going to need to go directly to the hospital to be admitted right now" penetrated my thoughts of fettuccine alfredo and garlic bread. </span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I'm sorry. I don't mean to sound like an idiot.....but, huh? What? Huh?</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"> </span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Thank God I'm not a gambler or else we would've lost big time on this revelation."</b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">So it turns out that I'm running a fever (102.9) and I've got a large hematoma and to ice my cake of misery that is being admitted to the hospital on your daughters 11th birthday is the fact that I have a staph infection! It's like some kind of sick persons tri-fecta. Thankfully the admitting process was pretty quick. From the time we arrived in the door to the time I made it into a bed it was just over an hour. I spent the next 5 days doing whatever I had to do in order to get out in time for Hannah's party.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">I did get the sneaking suspicion that the universe was working against me when I had to have the new PICC line that had been put in on my last stay removed. This was not horrible because now that chemo is complete for the time being I don't really require it. The flip side however is the fact that I have horrible veins so to put an IV in my arm is a bitch and to get it to last longer than 12 to 14 hours is a whole other issue. So day #2 brought the removal of the PICC line due to a bacterial infection and then came the revolving door of IV's. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">By the time I was finally discharged on October 1st, the day before Hannah's party, I'd blown 3 IV's. I wore my bruises like they were war wounds from battle. All I cared about was being able to be there with my family, friends and Hannah to see her blow out her candles.</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">A few days later my baby sister arrived which also signaled the end of my mother's stay. Since I was beginning to do a lot better and there was no chemo on the horizon it was agreed that my mom was going to go back to Georgia for a little while to spend some time with my dad who had been abandoned for all of these months while my mom had come to care for me and my family. My sisters visit was short and I spent most of it either with my head in a bucket or in and out of sleep. </span></div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><b>"Is this the part where you're gonna try to get all mushy but then I'm gonna laugh cause you look retarded? Or is this one of those times where you pretend like your going to be sentimental and you get all close to me so that you can fart? I'm just wondering how I need to play this....." </b></span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">On October 11th with my mom and my baby sister by my side I went to see Dr. Z for my follow up and was handed the biggest piece of good news since hearing that my bone marrow and lumbar puncture were clean. </span></div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;"> <b><span style="font-size: large;"> </span></b></span></div><div style="font-family: inherit; text-align: center;"><span style="font-size: small;"><u><span style="font-size: x-large;"><b>I'M OFFICIALLY IN CLINICAL REMISSION!</b></span></u></span></div><div style="font-family: inherit; text-align: center;"><br />
</div><div style="font-family: inherit; text-align: left;"><span style="font-size: small;">Two days later I had to wish my sister and mom a safe trip back home to Georgia and get ready to step into the next phase of my fight against the AML. </span>Life in this moment although sad because my mom, dad, sister and some dear and very loved friends are not here with me to completely celebrate this milestone, is so sweet all the same because I truly feared, even though only for brief moments, that I might not have the strength to push through and fight until I had the upper hand.</div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;">I feel so unbelievably blessed and loved and look forward to sharing all the stories that I've been either too tired or lazy (apparently chemo didn't kill the procrastination that's been running rampant in my body since about age 7) to write, post and share with all of you. </div><div style="font-family: inherit; text-align: left;"><br />
</div><div style="font-family: inherit; text-align: left;">Until next time.....</div><div style="text-align: left;"><span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"> </span><b> </b><b><br />
</b></span></div></div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-57719465935164449322010-12-03T23:36:00.003-06:002011-02-09T20:11:28.028-06:00Tis the season to give...The Fresh Air Fund<div style="font-family: inherit;"><span style="font-size: small;">To even try to list the number of things that I've taken for granted over my now close to 34 years of life would make for a very long and probably boring post. I could go on about how I believed that air conditioning was free and everyone had it because the days in Florida were too hot for it to be a "luxury" item. As I've gotten older, I've learned the hard way that the line between need and want can be easily skewed. My kids for instance are blessed with green areas to play in that aren't overrun with the toxicity of industry. We spent last Friday night with a friend and his family roasting marshmallows out by a bonfire and have plans to do so again for the New Year. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">My children can walk two streets over and be immersed in a wooded area that is fit for exploring that when you are in the middle of it you almost feel like you are worlds away from the bustling little city that we live in. Every child deserves the chance to be surrounded by nature. To nurture the explorer in us all is one more way to keep the innocence meter full. As the giving season has now commenced I urge you, my friends...my readers, to think outside the box and give to <a href="http://freshairfundseason.com/">The Fresh Air Fund.</a></span></div><div style="font-family: inherit;"><span style="font-size: small;"> </span></div><div style="font-family: inherit;"><span style="font-size: small;">I hope you all continue to have a wonderful Holiday Season.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Much Love,</span></div><div style="font-family: inherit;"><span style="font-size: small;">JP</span></div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-89773722520563058962010-10-27T06:09:00.002-05:002011-02-09T20:12:28.973-06:00Don't make promises you can't keep, but more importantly...never say never<div style="font-family: inherit;">Wow, in reference to the last post I made on this blog, ya know the one of "I'm gonna post again within the next 24hrs. I promise"...it seems that I think 24hrs is somewhere in the ballpark of approximately 42 days! Don't you wish you ran on my time schedule?? Just think of all the things you could accomplish!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">All joking aside, my last post back in September really was meant to be followed up on with another post just a mere 24hrs later. True story. I had been working on a piece that unfortunately had taken almost 7hrs. It seems that once I was diagnosed with leukemia whatever bladder function I had remaining from pregnancies, surgeries and the mere cruel workings of that bitch mother nature had gone out the proverbial window leaving me with a need to pee every 5 seconds opposed to my normal once ever 20 minutes. Thus taking my writing time and quadrupling it! Add in nausea and my mother coming to check to see if I was breathing, awake, hungry or did I mention breathing and a normal session that I could have knocked out in an hour or two tops without so much as 1/2 dozen trips to the potty (usually with laptop in tow...it's not like I haven't done it before, example <a href="http://southernfriedlife.blogspot.com/2009/08/tales-from-crapper.html">"Tales from the Crapper"</a>) had been turned into an arduous non multi-tasking catastrophe.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Being diagnosed with leukemia SUUUCKSSSSSS!!!! Being diagnosed with leukemia and NOT being able to write and express my frustrations with previously stated disease SUUUCKSSSSSS ASSSSSSSS!!!! </div><a name='more'></a><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">It seems that with the diagnosis of cancer my body lost the ability to do more than two things at once and seeing as the first thing on the "body's to do list daily" was fight the leukemia, I had to be real selective in choosing the second activity. I usually switched between eating and thinking but more times than not both of those options tired me profusely so I'd go to my third and more favored option which was sleep. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">The promise that I made about writing again after that last post was broken when I angered my body and broke the "I'm dealing with leukemia rule" that was set unbeknown to the rest of me. Apparently my attempt to battle cancer, think and write all at the same time was enough to make it so my whole body revolted and it sent me right back to the hospital. I mean if you would've asked my doctors they'd say that I was admitted due to an extremely low white cell count that had thrown me into another bout of neutropenia, thus making me highly susceptible to illness and already battling a staph infection. But I know the real reason...cancer's a vindictive bastard that will flex it's muscle in whatever way it seems fit to make sure that you know that it and not you are in control.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Thankfully, I have learned a valuable lesson in the 42 days since that well intended but still broken promise and in the now 6 months exactly since my diagnosis. That lesson is to take back the power that cancer had slurped up and give it the very well deserved finger! Oh yeah. That's right....it's the big F-U to cancer! </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I'm happy to announce that with technology, amazing doctors, nurses, the love of my family and my friends, the shear blessings of every God in this vast universe and last but certainly not least my <a href="http://en.wikipedia.org/wiki/Acute_myeloid_leukemia">broken #16 chromosome</a> that was a factor in my getting <a href="http://en.wikipedia.org/wiki/Acute_myeloid_leukemia">AML </a>but more importantly was a factor in my treatment and reason that I am as of this moment in the early phase of clinical remission!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Clinical remission!!!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">God I never thought two such words that were not the names of my children, love of my life, cherished friends or my favorite type of ice cream could sound so magically wonderful! At this moment I am in a phase of contentment that I didn't think would be possible at 3:33 am back on April 27th. In that moment, alone in the emergency room, I pictured the worst case scenario. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I pictured the anguish on my loved ones faces. I allowed myself to imagine for an instant how my children and Jon would cope. I swallowed back that pain that would be the very real possibility of my parents having to mourn the passing of another daughter. I envisioned my sister living through the pain that I had once endured in losing a sibling that she had been too young at the time to comprehend. I thought of how my very best friend Allison, who I've known for close to 30 years and how we loved the movie "Beaches". All the sudden it seemed as though now I was to be the character that Barbara Hershey played when all these years I had planned to be the one Bette Midler had shined in and of course there was the fact that we had agreed neither of us would die because...well we were young, invincible and usually got our way. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I went through all of that in about 5 minutes. Then I took the deepest breath possible with the amount of pain I was having from my now very swollen and seemingly pissed off spleen and decided that if all these scenarios were to be my outcome then A) I wasn't going down without a fight and B) I would NEVER allow myself to go back to this mindset again.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I was EXTREMELY successful with the first one and that is something that I pray will not change because clinical remission or no clinical remission a chance of relapse for AML is around 60% within the first 1-5 years following treatment. The actual statistics don't go down to a more favorable number until about 8 years following treatment but even then it's around 40%. My chances of achieving a classification of "cured" are only about 25% but I'm still relishing in this albeit tiny victory in the mass scope of what I've gone through thus far and what I still have left to weather and achieve. I will continue to educate myself, follow doctors orders and lap up all the positive energy that is, thankfully, in a seemingly unending supply from those around me.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">As for the "I would NEVER allow myself to go back to this mindset again" situation...well, ummmm...yeah...about that. To say that I've never gone back there would be a bald faced lie. To say that I will never go back there in the coming hours, days, months, years and so forth would more than likely be another lie. If I was to throw around numbers like the one's I'm up again with relapse and so forth, sadly I think they would be higher than that 60% in the first 1-5 years following treatment stuff.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Just as I've learned I've got a lot more fight in me than I thought was ever possible I've also learned that you should NEVER say NEVER. It seems to me that as soon as you utter those words that whether it be the workings of karma, the natural order of bad things, the result of foolish choices, the inability to harness the idiotic tendencies of the human race and many other things that I have not the time or expertise to write about...inevitably the NEVER gonna happen situation...well for lack of better terms...it happens. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">If you are like me and require examples sometimes to see the bigger picture I will leave you with this explanation that I recently gave my 16 year old when the topic of a "my child would never" discussion took place regarding a mother's reaction to a perceived bullying incident involving her own child.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><i><b>ME:</b> So I heard that there was a confrontation regarding that situation at rehearsal the other day.</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD:</b> Yeah. But the parent said that her child would never do anything like that.</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>ME:</b> Well that's a sure fire indication that there has been, is currently or will be an issue in the near future.</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD: </b> Huh? What do you mean? She said that her child wouldn't do that. So....I mean....why, would you say that?</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>ME: </b> You know how you just now came home?</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD: </b> Yep.</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>ME:</b> Well now that you are sitting here in front of me I can say that at this exact moment I know that you are where you said you would be at the time that you said you would be and that you are not inflicting harm verbally upon anyone. Would you say that is correct?</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD: </b> Yep.</i></div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><i><b>ME: </b> Up until the moment that you were sitting smack in front of me I couldn't say with 100% certainty that you weren't doing something that could be construed as harmful to yourself or others, something that myself or your dad didn't wouldn't approve of or agree to you doing, something that is illegal or immoral. Would you say that is correct?</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD: </b>(Getting flustered) But I was at rehearsal. Are you saying you think I wasn't where I said I was supposed to be and doing what I said I was doing??</i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>ME:</b> Relax...I'm not accusing you of anything...yet. But I'm seriously thinking about it. Anyways...the point I was trying to make before you got me to worrying that maybe I should go back to randomly showing up to places you say that your going to be just to make sure your not lying to me is that if someone were to come to the door before you came home and told me you were slinging meth to pre-schoolers on the corner of Gause and Robert I couldn't say "well my child would NEVER" do that because CLEARLY she is too busy lying to me about being at theater rehearsal! </i></div><div style="font-family: inherit;"><i><br />
</i></div><div style="font-family: inherit;"><i><b>16YR OLD:</b> (Big dramatic hand gesture and eyes rolling) Sure you could say I would NEVER do that...I don't even know how to make meth let alone sling it! (Gets up and walks away from table leaving me to shuffle after her in a painfully slow manner launching questions about her rehearsal in rapid fire succession)</i></div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Man I love that even in the face of cancer both myself and my family have not lost their sense of humor and I still have not lost my ability to be a complete and totally neurotic mother. Ahhh....good times.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I will admit that my humor has become a lot darker lately which can be both off putting to others and wildly entertaining to me. I've been told that it takes a strong person to stare a potentially fatal illness in the eye and say, "not today my enemy...your not taking my life today, but come back tomorrow and we will duel again". Six months of that has been exhausting. However, I will do it everyday for eternity if that is what it takes to ensure that it loses and myself and those that I love remain victorious. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Jon and I have had many conversations about the "what if's", "how longs", "can you believe", "did you ever", "who'd have thought", "this is insane" and my favorite "not on my watch" to fill many, many pages and it always seems to come down to one thing in our very scientific and logical way of picking this illness apart....I'm one stubborn son of a bitch. Plain and simple, I'm just not happy until I've won. By whatever means necessary. Until now this has not been a very admirable quality. Unfortunately for Jon he had to concede that I was right in order to claim the prize of keeping his wife alive. He swears that it was worth it. Ya'll might want to check back with him in say 15 years when the luster of being cancer free has worn off and he's had to listen to me exclaim how right I've been everyday for that entire time. In short, what some call strength I call pure unwillingness to allow the cancer to be victorious.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">FYI, before you start writing the hate emails <b>MY CHILD WOULD NEVER SLING METH TO PRE-SCHOOLERS ON THE CORNER OF GAUSE AND ROBERT</b>....I mean seriously, she is WAY too busy duct taping her little sister to her bedroom wall and taunting her with licorice that she keeps just out of the reach of her mouth.</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com1tag:blogger.com,1999:blog-4922258437973431881.post-28405925322881892202010-09-15T03:27:00.001-05:002011-02-09T20:12:54.692-06:00It's coming...I promise....<div style="font-family: inherit;"><span style="font-size: small;">I have now spent the past 5 hours trying to work on my next blog post. Thanks to tons of emails and Facebook prodding I have decided to put the little bit of energy I've got in any one given moment into updating how things have been going in the close to 2 months since my last post. I did not, however, realize that it was now after 3am and as much as I'd love to finish and post.....I've got to get some sleep in order to keep the evil cancer cells at bay. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">You have my word that a new post with all the fun filled details of possible liver failure, how 28 days between treatment was close to doubled causing massive anxiety and how the one of the worst moments in my life brought about one of the most magical moments in over a decade.....</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Stay tuned...it will all be brought to your eager eyes in the next 24 hours.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">~JP</span></div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-49581330704518697772010-07-31T22:19:00.002-05:002011-02-09T20:13:31.968-06:00Contrary to popular belief I am not dead...<div style="font-family: inherit;"><span style="font-size: small;">There are a few things you must know when you start a blog that has something to do with a life threatening illness....if you go more than a week, possibly two without posting you will get emails from people asking if you are still amongst the living! I am happy to report that while I have been tired and weak as hell, I am still very much alive.<a name='more'></a></span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">It seems though that I underestimated just exactly how taxing this cancer thing was going to be. I was doing so well following my first round of consolidation therapy in early June that when I started to go downhill in terms of needed repeated blood and platelet transfusions and having extreme bouts of fatigue I realized I may have to readjust my thinking on the matter. I sleep....A LOT! I've always been a fan of sleeping, napping, lounging...being lazied in the bed for hours at a time. When it's a choice your making like a recreational sleeper it seems great...well at least it did to me. But when the circumstances change and it becomes something your are doing constantly, because...well, because you can't muster the energy to do anything else...it becomes more than a bit irritating and nerve wracking. At times I think I'm going to go stark raving mad if I spend another minute in this bed. But then I become exhausted and fall into almost a coma like sleep and I'm relieved from having to worry about it until the next time.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">So what have I been up to since my last post? I'm sure that is at least someone out there that cares. Just kidding. I know there are two of your. Anyways, I went for my second round of consolidation therapy (fancy terms for chemo treatment) on July 9th and ended up being in the hospital for 9 days as opposed to scheduled 6. I developed a bacterial infection and was having side effects from the chemotherapy. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">After the first bag of chemo was hung and running I began to have severe headaches. The pain was excruciating. It wasn't like a migraine but it hurt something awful. I hadn't had that in the past with my chemo and they were extremely concerned because they worry about the chemo drugs going to your brain and causing neurological damage. I'm pretty sure I came into this cancer diagnosis short a few screws up in my brain so adding to that would be pretty shitty. They ran multiple test to check and see how my brain responded to different stimuli and concluded for now at least that it was most likely just headaches and not the chemo.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">I swear my body doesn't want to do anything the easy way and just to prove this I ended up having an adverse reaction to not one but two separate platelet transfusions. Ummmm.....yeah, for those of you that don't know a leukemia patient that cannot stand to get blood, platelet or other blood related products transfused without adverse reactions is called one thing....dead! The whole basis of this disease is eliminating the leukemia cells in your blood stream and replacing them with healthy cells. If you can't get blood, platelets or blood products...you will die! </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">So after the first adverse reaction I was a little shaken. After the second one I was mentally making out a will and thinking who would get what. I don't have a lot to dole out mind you so those thoughts only occupied about 3 minutes of 30 minute ordeal to get me feeling and breathing back to normal. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Once it was determined by my team of doctors that I could be released and sent home I had somehow managed to hit an even lower point of fatigue and exhaustion. My mom had left with Hannah in tow and so I had no one at home to care for me. I honestly didn't think I would get to the point that I couldn't care for myself on a day to day basis but there I was faced with it when a few days after being out of the hospital I had made my way to the bathroom to pee and found myself about to black out on my bathroom floor. I managed to lower myself to the tiled floor and lay my head down on the balled up bathroom rug and Penny curled up next to me. I must have laid there for a good 20 minutes before feeling well enough to crawl, on my hands and knees, back to my bed. By the time I got back up in my bed and lifted Penny up, I plunked my head down on a pillow and slept as if I had just hiked trails on a mountain all day.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">I didn't say anything to Jon when he got home about my near fainting spell. I didn't want him weighed down with anything else stressful. However, a few days after that incident I actually passed out in the bathroom and hit my side and was down for a good 10 minutes at least. I had to tell him and then began planning on how fast we could get my mother back out here to stay. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Jon's mom was handling all my clinic appointments and Olivia was home during the day in between things that she was participating in so we were able to stretch it out until this very weekend. I had my weekly appointment at the hospital yesterday to have my blood counts checked and ended up getting 2 units of red blood cells and 1 unit of platelets and NO adverse reactions to either. I was lucky enough to be able to do the transfusions out patient and after an entire day (from 8a to 6p) spent in a chair hooked to an IV I was pronounced good to go home.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">So this morning Jon left with Olivia to make the 8 1/2 hour drive to my parents home in Georgia to retrieve our other daughter Hannah and my mother. Since I go from feeling semi lucid and have a tiny bit of energy to being full out ready to faint at a moments notice Jon's mom was given the task of being my sitter. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Before getting cancer my opinion of my mother-in-law was that she was nice enough, loved her son, was good to our girls and I appreciated that she didn't meddle in our lives like I've heard some mother-in-laws can and have done to couples I know. However, from the day that I was handed this diagnosis she was the first person that I saw after being transferred from SMH to Tulane without seeing Jon because I made him promise he would stay with our kids and go to work like nothing was changing in our life. He reluctantly followed my orders but sent his mom to be with me. From that moment on she has been a constant in my treatment and we've formed this relationship that I should have formed with her years ago. We talk and laugh and I see so much of Jon in her that it makes me wonder why I never put forth the effort in the past.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Tonight as I lay in my bed writing she is asleep on the sofa just in case I will need anything or if something should go wrong and I need to be taken to the hospital. Before being diagnosed with cancer I would have the worst time sleeping if Jon wasn't in the bed or if he wasn't in the house. There will be no problem with that this evening. I don't know the reason I was struck with cancer, nor do I care too much as long as I come out the other side with my life. Sometimes I think that this diagnosis was a way of forcing me to stop and realize the importance of the little things in your life and the people around you that will truly go to the ends of the earth to provide for and care for you.</span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">I've spent many years in a dark hole of depression wishing for some sign of what this life of mine is all about. In the last 3 months now since my diagnosis its as if everything has snapped into focus. I pray every day that I can hold on and fight so that I can fully enjoy the people and things around me unlike how I had pushed them aside for the past few years due to depression. </span></div><div style="font-family: inherit;"><span style="font-size: small;"><br />
</span></div><div style="font-family: inherit;"><span style="font-size: small;">Exhaustion is taking hold again, so I'm stopping for now......but I'll be back again soon.</span></div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com1tag:blogger.com,1999:blog-4922258437973431881.post-81516364072714659832010-06-29T23:39:00.002-05:002011-02-09T20:13:57.804-06:00Yeah I've got counts in low places....<div style="font-family: inherit;">Today I had an appointment with 2 of my favorite nurses, Theresa and Helen, on 8th Floor East to have my PICC line flushed, bandaging changed and labs drawn to check my cell counts. Last week when I came for this type of appointment I was feeling pretty great. I had a good deal of energy and was pretty certain that my lab work would reflect a normal cell count and I'd be free from hospital visits until the next week when it was time to have labs drawn again. Last weeks labs came back with low red cell and platelet counts so I was the proud winner of a 2 night stay.</div><a name='more'></a><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Today when I made my way in for my appointment with my MIL by my side I questioned if I would even be able to make it from the elevator to the nurses station to check in for my appointment. I have been so unbelievably weak since coming home from my hospital stay last week. After my labs had been drawn and the bandaging changed and lines flushed we made our way out of the hospital.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">While I had made the walk earlier from the parking lot to the hospital, both I knew and my MIL knew that I wouldn't be able to make the walk back. I copped a squat on one of the benches out in front and waited for her to pull around and pick me up. I feel like a celebrity with all this chauffeuring. Finally I can text or talk in the car....while it is moving...and not face the wrath of Jon or even my kids for "breaking the cellphone law". </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Unlike last week there was no stopping to grab a bite to eat for lunch in an attempt to limit my exposure to the germ infested outside world. As soon as I got to the house it was time to shrug off my clothing and slip on my pj's. That act alone made me so tired that I had to lay down for a good 30 minutes before I finally had enough energy to get up and make myself something to eat.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I began to feel sleepy again, even though I had only been up and around for barely 15 minutes. Who knew making a peanut butter and jelly sandwich and eating it could be so taxing. I felt my eyes become droopy and I shuffled my way back to the bedroom. A thought occurred to me as I scooped up Penny and put her in the bed. She began to bounce about like a toddler jacked up on pixie stix and all I could think was times like this make me wish I had a cat. Cats just eat, poop and sleep...which is pretty much my existence for the past week. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I didn't have the energy to deal with the energy that she was emitting. If I thought I could harness some of it and use it for my own I would do it in a heartbeat. Finally Penny exhausted herself out and it was time for a real nap. I text Jon to let him know that I was laying down but that I had my phone on loud and vibrate in hopes of not having a repeat of last week. I said a little prayer in hopes of my counts coming back as high enough so I can avoid another hospitalization.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">My phone rang at a little after 2:30p and it was my oncologist calling to say that lab work was in and my red cell counts were dangerously low and I'd need to have another transfusion. Ergh.....damn blood cells!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">She told me that I had two choices. I could either go to the ER as soon as I was able and they can do the transfusion there or I could wait until tomorrow morning when I have my appointment with her at the clinic. I will have to go in an extra 30 minutes prior to my appointment, which in case your wondering is at the butt crack of dawn, and they would do the cross, type and match in order to get the irradiated blood ordered so that when I was done with my appointment with her I could just go over to the hospital and have the transfusion.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Since I'm not running a fever I decided to just wait until tomorrow morning. Sleeping in my own bed as opposed to trying to sleep on a stretcher in the ER or waiting for a room to be admitted to and then going through the transfusion which you can't sleep through because they have to monitor your temperature and blood pressure every 15 minutes. Ummm....yeah, I'll take a good nights rest and meet this task head on tomorrow thank you very much!</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Downside to going tomorrow is that my MIL will basically be held hostage, in the waiting sense, while I have my transfusion. If I get to go home after it is complete it won't be that bad. However, if they deem that I need to be kept for observation or because I have a reaction to the transfusion then the poor woman will have wasted an entire day waiting on me.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I can feel my eyelids drooping now and I still need to go pack a bag, just in case I end up having to be admitted. Hope for the best...plan for the worst. Goodnight!</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com1tag:blogger.com,1999:blog-4922258437973431881.post-59384878117981109632010-06-28T23:43:00.002-05:002011-02-09T20:14:38.207-06:00Rainy day and lunch with a friend...<div style="font-family: inherit;">I woke up this morning feeling very tired. Not the weak, fatigued tired from Friday but just a blah, kind of maybe I could use a little more sleep kind of tired. I went out to the kitchen to make myself something to eat so that I could take my morning medications. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">After eating my toast and drinking my hot tea, I headed back to my bedroom with Penny bouncing down the hallway as if she were a gazelle. God I love that dog. She makes me laugh and smile every time I am around her. She's pretty much my 3rd child. I know that I am breaking all sorts of rules by having her close to me while I'm undergoing chemotherapy (so if you are my doctor or one of my nurses and you are reading this...please pretend that I have one of those Men In Black flashy things and forget anything that pertains to my dog but remember EVERYTHING that pertains to curing me) but I know that my heart would break and I wouldn't do as well without being able to have her near.</div><a name='more'></a><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Today though I was having a lunch date with a human. So Penny had to spend time in her kennel. One of my very bestest friends Mar was gonna come by on her lunch break and chat for a bit. Most of my friends, well the close ones, have seemed to pull away a little bit. At first I was sort of hurt by it but when I talked to them about it, time and time again I heard the same thing being said, "we don't want to burden you with our problems when you are going through something as serious as battling cancer". I told them to stop right there. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I love my friends. They are some of the best people you could ever meet and I feel honored to have known them and be integrated in their lives. I understand where they are coming from but sometimes when I sit and talk with them and they are confiding in me their problems, heartache or whatever, it allows me to get out of my own head for that moment. It serves as a distraction from trying to remember if I took my temperature, what medicine needs to be taken next, am I eating the right things, did I drink enough water, am I drinking the right water, should I make out a will, what will happen to my kids in the event that I die from this.....yeah, all I do all day is think, think, think, THINK! </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">It's downright maddening and I not only welcome the change of topic, I damn near crave it. So today Mar braved the torrential down pour and came and spent her lunch hour with me. It was great seeing her and even better that we just talked about her. There was only a small slice of time left open to talk about how things were going with my treatment and that seemed too much by me. I really just wanted to hear about her and life outside this house. </div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Plus she brought food, so she was golden.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I don't know how long it will take me to achieve remission or a possibly be cured but as long as I can have days like these where I get a few moments with a good friend then I know that I will make it.</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-37913102945461718722010-06-28T23:27:00.002-05:002011-02-09T20:15:15.942-06:00My good fortune....cookie, didn't make the list.....<div style="font-family: inherit;"><u><b>June 26, 2010</b></u></div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I finally feel semi human again. Of course it is coming just in time for me to go for my next lab appointment on Tuesday which if my counts dip again will find me back in the hospital for another round of transfusions. But I'm not gonna think about that right now. Especially when Jon has decided to treat us to take-out from our favorite Chinese restaurant here in Slidell called <a href="http://maps.google.com/maps/place?hl=en&um=1&ie=UTF-8&q=yee+chinese+slidell&fb=1&gl=us&hq=yee+chinese&hnear=Slidell,+LA&cid=12982753611480604314">Yee Chinese</a>.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I have to limit my time out and about in public places for the next few months since my body is susceptible to just about any and every germ or bacteria that could be floating around or lurking on surfaces. So with that being said my ability to go out and grab a bite to eat with family or friends is a big "no, no" for the time being. When Jon offered to bring home Chinese for dinner both Olivia and I did a little happy dance.</div><a name='more'></a><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">My appetite has been fair lately. It has it's moments where no matter what I eat I throw it up. But then there are other times when I eat 3 meals a day and couple snacks in between and feel fine. It's a nutrition roller coaster that I'm riding on these days. I am supposed to be keeping to what's called a <a href="http://www.upmc.com/HealthAtoZ/patienteducation/Documents/NeutropenicDiet.pdf">Neutropenic Diet,</a> which cuts out any fresh fruits, fresh or raw vegetables, aged cheese, raw nuts, unpasteurized milk or yogurt, yogurt containing live cultures and the list goes on and on. I swear it just never stops. Isn't having cancer enough of a punishment to my body? Do you really gotta go and take away my cheese and yogurt?!?</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I'm fairly certain that the chinese food I've just consumed didn't land on any of the "DON'T EAT THAT BECAUSE IT COULD MAKE YOU SICKER AND RESULT IN YOUR UNTIMELY DEATH" category. But if it does, please note that I will have gone out with a belly full of happiness.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Our meal was drama free. No choking, vomiting or any other bodily function. Before I could pronounce the meal complete I had to fish out my fortune cookie and see what wisdom it held inside its yummy shell. I cracked it open, pulled out the sliver of paper and read,</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit; text-align: center;"><i><span style="font-size: small;">"nature, time and patience are the three best physicians" </span></i><i><br />
</i></div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Hmmm...pretty curious. Now my real question would be are the best physicians 4 through 10 responsible for good pain and sleep medication? Because I may need help with that when these scripts run out and I have to deal with my doctor who believes in one being alert at all times to deal with the cancer.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">Shit lady.</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">It's in my body. I know it's there, you know it's there and until it leaves I would like to be comfortable. It's not like taking these medications is going to make me forget that I have cancer, it will however make it a lot more pleasant for those around me because me + pain + inadequate pain control = very unhappy family. Am I making any sense now??</div><div style="font-family: inherit;"><br />
</div><div style="font-family: inherit;">I guess I need to go back and spend a little more one on one time with the patience physician. I'm gonna need another egg-roll for this.</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-54236601403532127422010-06-28T22:42:00.001-05:002011-01-30T03:55:44.406-06:00I'd rather have a freaky Friday than a weaky one....<div style="font-family: Georgia,"Times New Roman",serif;">June 25, 2010</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I got discharged from the hospital yesterday. I ended up having to be in for an extra day because I was in excruciating pain that I was in with my unruly spleen. The transfusions went great and I really didn't suffer any adverse reactions to them which was great. I felt bad for the nurses that were caring for me because I was being kept in isolation while they brought my counts up so anyone entering my room had to put on a surgical gown and mask. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">The mask drives me crazy when I have to wear them. You get overheated because your breathing in the same hot breath that you just released. Unfortunately I will have to get used to it because if I intend to go out in public at all for the remainder of my treatment it is imperative that I use these masks.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">So I was pretty happy to get my walking papers and be able to ditch the mask in exchange for my comfy bed and use of my laptop. The only problem seems to be that I am so very, very fatigued. I got home from the hospital yesterday and immediately laid down to take a nap and ended up sleeping until 9p. I made my way to the kitchen for a bottle of water and then shuffled back to the bedroom and took my Ambien so that I could go back to sleep. With little effort I was able to fall back to sleep within 10 minutes of taking my medication. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Waking up this morning I felt like I was moving in slow motion.</div><a name='more'></a> The mere thought of having to get up and make myself something to eat seemed like an insurmountable task. After several tries to get out of bed without passing out and making it to the door of my bedroom and practically collapsing, I had to call Olivia to come and make me something to eat. <br />
<div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">She did so and brought it to me in bed. I could barely sit up and it took me what seemed like forever to finish the sandwich that she had made. As soon as I was done with the last bite I rolled over and fell asleep. When I woke a few hours later I felt weaker then when I had awoken this morning.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I immediately called my doctor. I'm unsure as to whether this is a normal side effect of having the blood and platelet transfusions. I tried hard to rack my brain and see if I could remember feeling this way following any of my other transfusions but it was hard because all the others had been done while I was in the hospital for longer periods of time. This was just a stay for the transfusions and I was sent home the next day following their completion.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">When I finally got a call back from my doctor she basically told me that if I was that concerned, even though I was not running a fever, had not thrown up blood, had blood in my urine or stool and wasn't having difficulty breathing then I should go to the emergency room. If that wasn't the case then she would just see me at my next appointment on the 30th. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I hung up feeling more confused and slightly pissed. I really don't understand my doctor. But I'm too tired to go on about it right now. For now I just want to lay here unmoving and hope that tomorrow I feel better.</div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-81427156037336814312010-06-28T22:19:00.001-05:002011-01-30T03:56:24.118-06:00You've got some spleening to do....<div style="font-family: Georgia,"Times New Roman",serif;">June 23, 2010</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">After hours of waiting to get into a room I was told that my transfusion was going to be put on hold for an hour so that they could perform the CT scan on my abdominal region. I was so exhausted that I would have agreed to a rectal probe if it meant that someone....anyone would A) give me drugs to kill the pain or B) would give me something to knock me out so I could get some sleep.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Sadly I would be getting neither and thankfully no rectal probe necessary.</div><a name='more'></a> Now that the nurses were sure that my PICC was working properly I was taken down to radiology for my test. The actual test from start to finish took just under 15 minutes. but the techs were chatting with me so I didn't get taken back up to my room for another 15 minutes following its completion.<br />
<div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I was anxiously awaiting the results because the last I had been told of my spleen, was while I was at Tulane and the doctor advised me that my spleen and liver were enlarged but this was a normal occurrence in cancer patients. It's good to know that I'm normal in some aspect of my well being, but normal or not this bitch hurts!</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">My spleen is located right close or just about under the lower left part of my rib cage. Every breath I take elicits a sharp, electric shock type pain. Sometime it feels like a rubber band popping when I take in deep breaths or move too quickly. It's very unpleasant and has been getting increasingly worse as time has gone on. Just a little background info on my spleen....this organ for which no one can really give me a concrete and valid explanation of what purpose it serves in the human anatomy has been causing trouble since before my diagnosis and its gut wrenching pain is what drove me to go to the ER which in turn saved my life because they found out I had leukemia and that I required immediate treatment. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">It's a double edged sword. On one hand I'm thankful that I had this pain because it prompted me to get off my ass and go to the hospital. But on the other hand....seriously, this organ has no real purpose other than to make my life painful and miserable. So while I am grateful for its original round of death pain, I'd be more than happy to have it removed at this juncture.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">The doctor came in later this afternoon and let me know that my liver is within normal limits but that my spleen was still enlarged. I asked if there is anything that can be done to help ease the pain other than the obvious pain medications. He said that unfortunately they cannot remove my spleen while I'm undergoing treatment because it would be to risky, unless of course my spleen ruptured and I became septic. Great, I've got to wait for things to get worse before someone can make it better. Ugh....fanfuckintastic!</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Then my doctor tells me that there is a possibility that my spleen was dying. I was like....huh....what....huh?? He just stood there with this matter of fact expression on his half masked face as if he had just told me they had pudding as the dessert on the lunch tray today. I'm thinking there should be a little more feeling in a delivery about a possible dying organ.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Ummmm....you've got some explaining to do there doctor. He continued, by telling me that in the event that the spleen could not continue to function and filter out toxins that it would begin to shut down and eventually die due to it being overwhelmed by the toxins that it should be filtering. Basically my spleen is being suffocated by the toxins from my leukemia and the medications used to kill off the disease. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Well that sounds pretty horrible. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Then of course my mind shifts to the idea that I could possibly have a dead organ just hanging out in my body. I swear, I just once...just one time in my life, I would like a normal illness. Seriously, how many people get diagnosed with Leukemia from going to the hospital because they think they are constipated and then later find out that their spleen, which was the initial reason for going to the hospital, could possibly be dying in my own cancer laden body? </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I look forward to hearing from someone...anyone that can beat this. I'm not going to hold my breath while I wait for this to occur because I'm pretty sure I would die from asphyxiation and then where would my spleen be? </div>Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-11418007136744107582010-06-28T01:15:00.000-05:002010-06-28T01:15:36.852-05:00What's black and blue and red all over?June 22, 2010<br />
<br />
<br />
Today was just supposed to be a routine appointment at University Hospital with the chemo infusion nurses that would flush my PICC line, remove the current bandaging, clean the area and then apply a new bandage. I convinced Olivia to come along for the ride because it would be a short appointment and we would probably go have lunch after we were done. I had her at food, even though she seemed mildly reluctant because she hates needles and hospitals. But throw out a meal and you can coax her to do just about anything. God I've raised her to be just like me.<br />
<br />
We got to the appointment right on time and I was thrilled to see that on top of my two favorite nurses from my previous visits, Theresa and Helen, there was also the nurse I had during my biopsy named Alina. She actually hugged me when she saw me. It felt really good. Out of all of my appointments this is the one I enjoy the most and it isn't because I'm not getting poked and prodded on. It's my favorite because these nurses are always so upbeat and full of smiles. Oh and because they give me stuff, so that ups their likability factor.<br />
<br />
In case you have ever wondered....yes, my affection can be purchased. I keep a list on the ready in case I'm ever hit with the opportunity to pick anything I want and it will be purchased for me. I'm a goof, what can I say? <br />
<br />
Anyways...lets focus on the matter at hand. Alina lead me to a room where she would flush my PICC line, draw blood for lab work to show what my platelet and blood cell counts are followed by having my bandage being changed and a final saline flush. If all my labs come back okay then I won't have another doctor or hospital appointment this week.<br />
<br />
The appointment was both quick and painless. Oh happy day for everyone involved....especially my left arm that holds the PICC. Before leaving the hospital we stopped on the 7th floor so I could bring some sweets to the sweet nurses that cared for me just last week. Nina, who was my FAVORITE nurse (she's the one that brought me a cup cake) got out of her chair and said "Jessica Pettus...what are you doing here?" I was floored that she remembered me by first and last name. I really do adore her. She was so appreciative of the candy. I quickly thanked her for the exceptional care she had given me last week, hugged her and then let her get back to a meeting that she was in.<br />
<br />
I went to the nurses station and dropped off some goodies for them as well. Everyone kept asking why I was back on their floor. I told them it was just to visit and bring treats. I let them know if we can't get my Medicaid status figured out they will be seeing me every week and for a 1 week stay per month, so if they wanna get rid of me they need to take it up with the Medicaid office.<br />
<br />
My bag of goodies was empty and it was creeping towards lunch time so with tummies rumbling we made our way out into the rain and headed back to Slidell. My MIL let Olivia pick where we would go for lunch. She picked Times Bar & Grill. YUM! We had a good lunch. I ate tooooo much, but it was so tasty. I mean really.....to leave a morsel of that delicious bacon cheese burger lingering all by its lonesome on the plate would just be wrong on so many levels. Of course once I was done eating I immediately realized that we would need to get me home. Straight home. Quickly and safely as possible.<br />
<br />
Since having chemo therapy my digestive system has been more out of whack than under normal circumstances. The other thing that I am dealing with is that after anything I eat, whether it be a big or small meal, I begin to feel lightheaded. I don't like either one of those occurrences to take place while I am far from home. What can I say....my hiney prefers it home toilet. <br />
<br />
Once home and feeling a little lighter in the shorts and not so light in the head anymore I took Penny for a quick walk and then deemed I was deserving enough for a nap. I took my afternoon medication and made a phone call to Allison to touch base and see how things were going in her neck of the woods and with her gorgeous and completely yummy baby boy Doran. We were on the phone for a good 10 minutes when I moved the sheet that had been laying over my left leg. At first I thought it was a shadow, but when I clicked on the bedside lamp I saw that my leg was covered from ankle to hip in black and blue bruises. <br />
<br />
I quickly looked at my right leg and while there are considerably smaller amounts it began to freak me out. I told Allison that I needed to let her go so that I could call my doctor. It was a little after 1p when I got a call back from my doctor. She said that she was awaiting the lab results which probably wouldn't be in until tomorrow. She asked if I had any other symptoms besides the handful of bruises. I advised her that the pain in my left side has worsened, dry mouth still persist, continual nausea but am able to keep some meals down but there's been no fever, nose bleeds or continual vomiting or diarrhea. Her response was that if I was really concerned based on the symptoms I listed then I should go to the emergency room at University Hospital.<br />
<br />
I quickly dismissed that as being necessary. All I was having was some bruising and the other side effects I'd relayed earlier. If I wasn't being told that I HAD to go IMMEDIATELY that it's a LIFE OR DEATH situation then I was gonna call my best friend back and finish our conversation. Which is exactly what I did.<br />
<br />
After catching up for about an hour I decided that I was going to take a nap. I sent Jon a text to let him know that I was laying down. I would have my phone on but I didn't want him to worry if I didn't answer on the first call. There is a history of him trying to call me and me not picking up. It's lead to many a discussion because it is always when there is something important or time sensitive that needs to be addressed. <br />
<br />
I thought I was being proactive with my phone call. That is what I get for thinking.<br />
<br />
I fell into a deep, deep, DEEEEEEEP sleep. I finally woke up close to 4pm. I'd slept a little over 2 1/2 hours and I felt so refreshed. I made my way to the bathroom to pee and immediately noticed that my original 1/2 a dozen bruises that had prompted my call to my doctor earlier had multiplied like rabbits or worse <a href="http://en.wikipedia.org/wiki/B%C3%A9b%C3%A9%27s_Kids">Bebe's Kids</a>. And as I looked closer at a few different areas on my leg, stomach and arms I could see what could possibly be <a href="http://www.webmd.com/hw-popup/petechiae">petechiae</a> starting to pop up, but I wasn't completely sure.<br />
<br />
I finished up in the bathroom and made my way back to my bed to grab my phone. Just as I got next to the bed I saw that I was getting a call from Jon. I picked it up and the fury was unleashed. The words were coming out so fast at first I had no idea what the hell he was attempting to tell me. After about 30 seconds he calmed enough for me to understand that my doctor had called with the lab results and when she was unable to reach me, she phoned my mother who gave her Jon's number and between my mom and Jon they had been trying to reach me for the past hour or more. <br />
<br />
Bottom line....I needed to get to the hospital immediately because my platelet and red blood cell counts were dangerously low and I required a transfusion. Great...just frigging great!! Then she follows it with "you'll need to be in hospital 1 to 2 day or more if necessary". This made me think she had already arranged a bed for me, but I know that to assume will only end up making me look like a jackass who will then have to sit and wait in the germ infested waiting room. <br />
<br />
I inquired if there would be a room waiting on me when I got there because we were walking out the door right that moment which meant we could be there in less than an hour. She said "oh no no...I cannot get a you a bed assignment. You have to go to the ER tell them that I sent you and then you will be admitted through them". Oh well that makes things SO MUCH BETTER!!!! Ugh...sometimes I swear I am either being tested or punished by what I deem to be non common sense thinking individuals.<br />
<br />
I thanked her for getting the lab results back to me so quickly and told her I was on my way to the hospital right now. I had appeased one person that had been trying to track me down so it was time to move on to the next one.<br />
<br />
My mother.<br />
<br />
Thankfully she wasn't as flip as Jon was. She just figured I was sleeping and had my phone turned off. She was worried but she admitted that what made her the most anxious was how my doctor made it out to be a life and death situation. Damn doctor! Ergh....<br />
<br />
This is strike two on me missing an important doctor phone call. From now on I'm going to have to sleep with it duct taped to my head so I will hear the ring AND feel the vibration. I'd like to stick it somewhere else so I could reap the benefits of the vibration setting, but the thought of duct tape having to be removed from my lady bits....well, yeah....there's no call important enough for that type of pain.<br />
<br />
Jon informed me he was on his way to get me so that gave me approximately 8 minutes to pack a bag. Hmmmm....what to pack, what to pack?? I'm going to be inpatient for at least 2 days so its 1/2 a dozen pairs of underwear, 1/2 dozen pairs of socks, 3 pillows, journal (because I still don't know about whether I can have my laptop with me), pens, lots of mint gum, one chocolate muffin, body wash, shampoo, toothbrush and a slew of magazine's. Woo hoo...it's like going on vacation only not one that you can get lots of people interested in going to visit you on. It must be the less than exotic locale or the fact that I am the only one partaking in the "cocktails" aka IV morphine.<br />
<br />
Jon got to the house and I could see the anger in his face. When he finally spoke it was through clenched teeth. He told me that he wasn't pissed as much as he was scared. The fact that neither him or my mother were able to get me on the phone made him worry that something had happened to me. The drive was silent for a little bit but after I apologized for the umpteenth time he lightened up and we pulled into the ER drive. <br />
<br />
I went inside and filled out the admission sheet. The nurse at the admitting desk was kind enough to provide me with a surgical mask since I was only a week out from my last treatment. I took a seat and could feel the stares. Bald woman, with a mask and two tubes hanging out of her arm makes for some double takes no matter where I am at.<br />
<br />
I took my paper back to the admissions desk and she whispered that they would work as fast as possible to get me into the back to lessen my exposure to other patients. I thanked her and went to sit back down next to Jon. I don't think a full 10 minutes went by before I heard my name called. <br />
<br />
We stepped into a triage room where my vitals and medical history was taken. I got my admissions arm band and bright yellow one to alert doctors and nurses of my allergies. I was styling now! The triage nurse said that I could go back in the waiting room and someone would be out for me shortly. Jon and I took a seat and this time it was barely 5 minutes before my name was called and I was cleared to go into the treatment areas. Jon, however, was unable to come along with me due to strict visitor rules. <br />
<br />
I kissed him on the cheek and wearily waved at him as I made my way to a curtained area. Bed #13 would be my new digs for the next few hours. No sooner was I gowned and covered by the sheet provided I could hear the nurses discussing my case and how I really needed to be in an isolated room. Apparently this was a hard thing to accomplish on this particular day because of a few unruly patients that were either screaming or being hostile. Part of me wanted to stay in what seemed to be a safe little corner, but hey if I could get my own room, that would be nice too.<br />
<br />
Another 2 hours passed and they found an isolated room for me. Since my reports from the labs earlier that day showed my counts to be dangerously low it was deemed that anyone entering my room for any period of time would have to be masked. They completed all of the paperwork and then it was time to focus on drawing labs and preparing for the transfusion as well as waiting for a call for an empty bed upstairs. As I sat and waited for someone from the IV team to come and get my PICC working, because it had decided to take a shit and not work. I had just had labs and fluids flushed through these lines less than 8 hours prior and NOW the bastards decide not to work. Great. Great. Just frigging great.<br />
<br />
In an attempt not to delay things any further I told them to draw the labs from my other arm. I hate having to be stuck, but I was laying down so when I passed out I wouldn't harm anything and I was also starting to have a great deal of pain since I was now more than overdue for my scheduled dose of pain medication.<br />
<br />
After the nurse that drew my labs and the one that was working on my stubborn PICC line completed their task I asked to see the doctor. More and more petechia began to sprout up. There were a few inside my mouth which was a first for me. The other troublesome matter was the fact that while my constant companion, left sided spleen pain, was holding steady at a dull ache there seemed to be another organ that was unhappy and wanted to join the "lets torment Jessica party" that seemed to be in full swing at the moment.<br />
<br />
I was so tired and hurting so bad that I just wanted to cry, but that would only make the situation worse. As it creeped closer to 10pm I told Jon that he should leave and head home. I knew that I was going to be admitted, at some point, and there was no reason for him to lose an entire night of sleep over this. And there was the matter of Olivia being home alone. As much as I'd like to have him with me, priority one is always the kids.<br />
<br />
I tried to sneak a kiss from his masked face before he made his way out the door, but was not successful. Once Jon left I had no real distractions which meant I was free to focus on how much pain I was in. I was beginning to feel more miserable by the moment and now I was going to have to drink some chalky contrast in order to have a CT of my abdomen. Why must some diagnostic test be so damn disgusting?? Seriously, having to down 16 oz of gooey chalk berry flavored grossness that resembles milk but has the consistency of finely ground chalk sticks. It is not an ideal task to have to accomplish when you don't feel like putting anything in your mouth, let alone swallow and keep down for a predisposed time frame. My advice to those that ever have to drink a barium contrast....make sure it's cold...make sure you have a straw...suck as much as you can and swallow....then wait a minute or two and do it all over again until complete.<br />
<br />
It's not rocket science but hopefully it will help someone as it has helped me. I'm a giver of unsolicited information and advice. Your welcome America.<br />
<br />
It's just after 2 am and I am finally being transported to my room on the 8th floor. I'm a little bummed that I couldn't be placed on the 7th floor with all the lovely nurses that I had when I was last admitted, but I was hopeful that I'd have a new crop of great caregivers. <br />
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I'm so very tired. More bruises and petechiae are sprouting up by the hour. I'm settling into my quiet room. There's a constant whirring noise coming from a fan they have placed in the room. I told the nurse she could turn it off at anytime as it blew her papers around and she was forced to stop and start writing a few different times. She chose to leave it on so I just watched her become more and more agitated. <br />
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Then there was the fact that I had to be kept in an isolation room. Anyone coming into the room had to be not only masked but wearing a gown as well. This particular nurse was having major wardrobe malfunctions with the not to compliant blue plastic gown. I felt really bad that she had to wear it because I could see how hot it was making her. That may have been why she was adamant in keeping the fan on. This woman was the key to me getting pain medication in the very near future so I wasn't going to do anything to upset her apple cart.<br />
<br />
As time ticked by and I came closer to starting the first unit of the blood transfusion she began to take on that lunatic tone. When I had asked for more water and ice she asked who had brought me some the first time. I said that I didn't remember the nurses name but she was short with pretty eyes. My nurse snatched up the cup and pitcher and dumped it out and brought me sterile water. Are you kidding me? Now I've got to worry about water making me sicker. Jesus....I really wish I could have a good stiff drink right now.<br />
<br />
I'm pretty sure this is gonna be a LONG night....ergh, scratch that it's after 3 am now so technically speaking....oh who the fuck cares, this is gonna be one hell of an experience getting one on one nursing from someone that has the potential of making Cybil seem a bit normal. Pray for me people...pray hard!Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-22617952754381498142010-06-27T16:37:00.000-05:002010-06-27T16:37:37.845-05:00Who's your daddy....June 20, 2010<br />
<br />
Being back on the ambien makes for an early rising Jessica. Sadly it's like at the butt crack of dawn or in the case of today...way before dawn at 4 am. What the shit?? A cancer patient needs to sleep!! <br />
<br />
Ugh...why can't things just go normally? I made myself lay in bed until there was sunlight and then I went to roam the house. Once Jon got up and was trying to get ready to take the dogs out for their first of many walks of the day I decided to give him a little Father's Day gift of walking the two bigger dogs. <br />
<br />
This was the first mildly physical thing I have done since being home from the hospital. Granted the dogs didn't get their usual around the block walk but I did take them to the stop sign and back. Juniper and Mally both did their business but as we were making our way back to the house I was realizing that I had bitten off more than I could chew and may have to crawl back to the house. Just as I was worrying that I should have brought my phone in order to prompt a rescue mission Mally ran into a yard and started to drop her third poo of the walk. I immediately said "NO" very firmly and pushed the button on her shock collar that issues a tone and not the shock which is her warning of get where you need to be or the shock is next. So she pops up and starts to run but she is still pooping. Finally she breaks into a run and the final turd comes flying out and literally torpedo's over her head and almost collides with her nose.<br />
<br />
I began to laugh hysterically which gave me enough endorphins to make it back to the house. Jon was waiting and although he was a little perturbed that I took the dogs on my own he was thankful for the gesture. It's been hard on him juggling everything and not really having any downtime. I wanted today to be as stress free as possible. <br />
<br />
<i>Dear God in heaven, please let there be no medical crisis on this day. We need a day of rest...it's Sunday...work with me, okay? Thanks a bunch. Love Always, Jess</i> <br />
<br />
I began to feel hungry so I offered to make breakfast. It felt good to be cooking again. I kept it simple with just eggs and toast but I felt as though I had accomplished a lot given how I've been feeling prior to now. <br />
<br />
Hannah called and wished Jon a Happy Father's Day and I did the same with my dad. Olivia came home from spending the night at a friends house and we commenced with giving Jon his gift. So what do you give the man who really has nothing, wants everything (that is super expensive) and is carrying the financial weight of the family on his shoulders? <br />
<br />
A six pack of beer and his favorite snacks are a great place to start. We also got him a t-shirt, a book about the history of war (yep, he's a history geek) and the DVD set of the original "V" television series that scared the shit out of both he and I as kids. <br />
<br />
I wish I could have done more because without him I don't think I could be as strong as I try to be everyday battling this disease. He and I have had our fair share of issues but the one area that I've never doubted him in was the role of father. I feel blessed knowing that should anything go wrong my girls will continue to be loved and cared for in the same manner that they have been for their entire lives.<br />
<br />
I hope next year will find us celebrating his fatherdom with me having a clean bill of health. Here's to wishing.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-74438415694280033652010-06-27T15:47:00.000-05:002010-06-27T15:47:15.174-05:00Driving Mrs. Crazy.....June 19, 2010<br />
<br />
Tomorrow is Father's Day and the first thing that crosses my mind is FUUUUCCCCKKKK I haven't even gotten the man a card. I know that I can use the whole "I've got cancer" excuse but this is a day that honors the man that has been religiously caring for me through this entire ordeal, has lived with my mother for close to 2 months, orchestrated a blood drive to help save my life and has been holding down the fort financially without any inclination of when I will be able to return to the work place.<br />
<br />
Seriously if all of that doesn't earn you a Hallmark, well than I don't know what the hell does.<br />
<br />
First issue was checking our finances. I mean trying to give a gift to tell someone thanks for being a fabulous and amazing father and husband is great. But doing so and then bouncing a check because you've shorted funds in your checking account, um...yeah, I think that just has douchebaggery written all over it.<br />
<br />
With budget in hand I was met with the next hurdle. Transportation. I am the mother of a 16 year old daughter who unfortunately doesn't have a permit or license. CRAP....why do I procrastinate so much?? Ergh, if I had been more on the ball she'd have had her driving lessons last year and be a fully licensed driver by now. Why didn't I have enough forethought that I may be stricken with a potentially fatal illness and need to go to Target last minute in order to score a gift for Jon? I swear...I really am not a thoughtful individual.<br />
<br />
Luckily I had another option. My girl friend Stacy offered to be our driver. Minutes after getting on the road the skies opened up and a torrential downpour engulfed us. Immediately I felt bad for making her drive us, but she just smiled and laughed. If you could have been a fly on the window of that car you may have pissed yourself at how we yelped and jumped with each crashing bolt of lightening. I'm sure to any passing cars that were able to see us got a bit of a laugh. I love that when it comes to being crazy she is probably one of the few people that can measure up to my level.<br />
<br />
Finally we made it to Target and made our way through the store in record time. This was my first time being out in a store since my diagnosis. I no longer have the energy to be up and about for very long so it was a get in, get the gift and get out before I'd have to rest. Plus I'm not supposed to be around large groups of people.<br />
<br />
Mission complete, with gifts in hand, we made it back out to the car and then we were homeward bound. I wish I would have been up to visiting more or spending a bit more time at the store, but as first outings go....I think it went pretty good. Guess we will see tomorrow if Jon thinks our efforts were worth it.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-45221361804841842172010-06-27T15:26:00.000-05:002010-06-27T15:26:55.866-05:00Home alone....June 17, 2010<br />
<br />
With my mom and Hannah gone the house has grown quieter by losing 2 of it's 5 human occupants. The dogs of course are still as barky and yappy as all hell so you don't really have a long bout of silence unless it's bedtime and each pet has claimed a human to be near. <br />
<br />
I slept like a baby last night. Part of it was from being back in my own bed but I'm giving 1/2 the credit to the ambien that the treating doctor prescribed for me upon discharge from the hospital. When I had talked to both the Internal Medicine doctors and the Hematology/Oncology doctor that was handling my case they seemed perplexed at the idea that I had requested medication for sleep and anxiety at the time of my diagnosis but had been turned down by my oncologist. <br />
<br />
Hmmmmm.....lemme think on this for a sec. Is anybody else screaming "get a new doctor" in their head too?? Just wondering.<br />
<br />
So I was prescribed 5mg of ambien. Such a teeny tiny pill....but oh how it makes this insomniac sleep. <br />
<br />
I woke up feeling pretty good. My appetite wasn't the best but I managed to eat toast and have hot tea without throwing up. Score!<br />
<br />
Olivia is home with me today and she looks like she is about to go out of her mind. She is not one who likes to sit around and being stuck with me who can't drive (due to intermittent numbness in my feet and left hand) to say that her summer, at this juncture, was boring would probably be an understatement. <br />
<br />
Feeling horrible about keeping her here I told her she should call up a friend and see if anyone was free to do something. I could see the worry in her eyes because just 30 minutes prior to saying this she had witnessed me trying to go into the kitchen and make myself something to eat and having to take a break every couple minutes. As I made my way back to my bedroom I had to keep both arms out to brace myself along the hallway because I felt lightheaded. <br />
<br />
These are all things that occurred after returning home from my first hospital stay so it wasn't a shocking scene. The difference between then and now was that I had my mother here for the "just in case" moments. Just as I wanted a more normal summer for Hannah, hence me sending her to Georgia with my mother, I wanted the same for Olivia. I don't want either one of my kids to be burdened by my diagnosis. If things end in an unfavorable way, meaning I lose the battle with Leukemia and I die, I don't want my kids to look back at the summer of 2010 as the year they spent watching their mother get sick, fight like hell and then die.<br />
<br />
I want there to be some kind of distraction for both of them so as to keep their interest elsewhere when times get tough. When Olivia came back into my room and asked if there was any possible way that she could go out with a friend I immediately told her yes. Then I realized that her going out would mean I would be alone in the house.<br />
<br />
Home alone for the first time in close to 2 months. Woot woot...party!<br />
<br />
What to do? What to do?<br />
<br />
I thought about busting out my best Tom Cruise in Risky Business moves but realized I'd have to move some furniture around...so that was out. Then I contemplated running a hot bath, with bubbles, and taking a long soak while reading a book. But I can't get my left arm wet (that is where the PICC line is located) and I don't have the attention span to read a book. Seriously, I read a couple chapters and then have to go back and reread them because I've already forgotten what their plot lines were.<br />
<br />
In the end I scooped up Penny and with hot tea in my other hand made my way back to my bedroom. Once I got us both settled into bed I hit play on "The Hangover" in my DVR. It may not be the most exciting way for me to spend a Thursday night, but at least I'm spending it laughing.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-65898895747282975932010-06-27T14:11:00.000-05:002010-06-27T14:11:45.933-05:00Chemo, cupcakes and friends....<b>June 11, 2010 </b><br />
<br />
Second bag of chemotherapy was hung at the break of dawn today. So far my side effects after two infusions have been nearly non-existent. The doctors say it is because they are giving me smaller doses that run over about 3 hours, with 12 hour breaks in between as opposed to the 24/7 flow that took place when I was diagnosed. I, on the other hand, think that I'm not having a lot of side effects due in part to how proactive the doctors and nurses have been in regards to my concerns from the last go around.<br />
<br />
Nausea and mouth sores were the thorn in my side when I had my induction therapy. I was incredibly anxious about having to go through that again. Part of it stemmed from the fact that the treating doctors at Tulane seemed to think it was close to impossible that someone could be that nauseated or in that much pain. This time around it seems like the doctors are not only willing to listen to my fears and concerns, they are willing to act upon them.<br />
<br />
What a friggin concept?? Actually listening to your patient. Wow.<br />
<br />
So about half an hour before they start running the cytarabine, which is the name of the medication used in my treatment, they hang a bag of zofran. Then when they start the chemo they give me an IV dose of phenegran, which is another anti-nausea med. Every 4 hours they come and give me anti-nausea medication, without me even having to ask. <br />
<br />
I'm so relieved that I'm not spending almost every waking hour with my head in a bucket and my hand wrapped around the nurse call button. Another thing that is going in my favor is that I still have an appetite. My new obsession seems to be chocolate chip muffins. Yesterday when I was admitted my mom made a run down to the cafeteria to grab a bite to eat and asked if I would like anything.<br />
<br />
Before I could even think about it I blurted out that I'd like a chocolate chip muffin. I didn't think I'd get one, but it sounded delicious. For me it seems that dealing with cancer is a little bit like pregnancy in the sense that I only seem satisfied in the hunger department if I am able to eat what I am craving. Unfortunately some of the things I crave don't settle well with my stomach and thus ends in the same way these situations did when I was pregnant. I crave something...obsessing about it until I actually have it on a plate in front of me. I eat, savoring every bite and then a little while later I'm heaving my guts. <br />
<br />
So cruel.<br />
<br />
When my mom came back from the cafeteria carrying a chocolate chip muffin in her hands as if she had found the Holy Grail, I began to bounce up and down on the bed. Clapping my hands like a 2yr old. I swear that this whole experience of dealing with a life threatening illness makes me adore the little things. <br />
<br />
This morning when my mom came back to spend some time with me she made her way back down to the cafeteria and scored me some more chocolate chip muffins. I told her that her dedication to keeping me swimming in muffins is heart warming and will definitely affect what kind of nursing home my sister and I will select for her when she's old and decrepit. She just laughed.<br />
<br />
I love seeing my mom laugh. Ugh...I'm gonna miss her when she leaves in a few days.<br />
<br />
There wasn't much time for me to wallow in thoughts of how lost I'm gonna feel with her departure because I was getting a visit from two of my childhood friends. Allison and Tammy, whom I've known since I was 3 years old were coming from out of state to throw Olivia's 16th birthday. Allison is Olivia's godmother and the person that knows me better than most, so it overjoyed me to have her handling this milestone in my daughters life. Especially since I can't physically be there. Thank God for ativan or I may have had a mini nervous breakdown over the fact that I was missing the party.<br />
<br />
Olivia's attitude of "I'd rather you miss this one and be around for all the rest" makes my heart swell with pride. I don't know if she is just putting on a brave face for me but I am amazed at how well she is dealing with all of this. As I sit chatting with Tammy and Allison about the party tomorrow, their drive out here and what they have been up to I feel a strange pang of jealousy that they will be able to be with my family on such an special day.<br />
<br />
As quickly as it came I immediately attempt to stuff that feeling away and focus on reminiscing with my friends. I can't believe we've known one another for 30 years. That's longer than most people stay married!! Grant it Tammy and I haven't remained close like Allison and I have, but if you'd just been a passerby of my room as we sat and talked, you'd never think we missed a day together.<br />
<br />
It was slowly creeping towards dinner time and the sun was starting to set when Allison announced that they were gonna head out so they could eat and get some rest for the big day tomorrow. That pang came back full force as I wished that I could just unhook the IV, throw on my clothes and go with them. Instead I thanked them both for coming to see me and all they are about to do tomorrow and give them the name of a few restaurants that would be a good place to have dinner.<br />
<br />
<br />
Once they leave and my room is all quiet again I close my eyes and try to shift my focus from the things that I am missing out on to getting through this round of treatment. A few minutes later one of my nurses comes in and gives me my dose of pain medication and I drift off to sleep.<br />
<br />
<b>June 12, 2010</b><br />
<br />
It looks like a beautiful day outside the window of my hospital room. The sun is out and there seem to be very little clouds. I am hopeful that this means Olivia's party will go off without a hitch. I throw up a little prayer that no one gets hurt, everyone has a good time and that they don't get any bad weather.<br />
<br />
The inflatable water slide was delivered last night and the kids wasted no time in breaking it in. I've been getting text updates on how things are going and I will be getting a full fledged report, with pictures, later on this evening when Allison and Tammy come to visit.<br />
<br />
After making an appearance at the party, my mom made her way over to sit with me. I'm trying very hard not to think about the fact that in less than 24 hours she will be going back to Georgia and taking Hannah with her. I know that Hannah is looking forward to not having everyday consumed with her mother sick with cancer. Summers spent with my parents are one of the highlights of Hannah's year and although I'd love to have my mom stay I know that achieving some sense of normal routine for the kids, especially Hannah, is important. <br />
<br />
<b>June 13, 2010</b><br />
<br />
Ugh...its Sunday. The day when both my mom and Hannah leave as well as my two friends Allison and Tammy. Every minute since waking this morning at a little after 6am (seriously there is NO sleep in the hospital) I have felt sad at how I won't just be able to call my mom and she'll come see me in the hospital or when I am at home I will peek into Hannah's room (where my mom resided for the close to 2 months that she has been here) and just chat with her or having her come lay with me in my bed.<br />
<br />
I've been so spoiled having her around. I know that I don't have to worry about my kids, the dogs or my house with her here. I've been told by the doctors that when I am discharged following this treatment that I may be weaker than I was following the last treatment. The only scary thing about that fact is that after my treatment the first time I was in hospital for another 20 days which allowed my counts to climb to a safe level which wouldn't leave me as susceptible to getting sick and I'd have a decent amount of energy because it. This time I will be sent home in what is called a <a href="http://en.wikipedia.org/wiki/Neutropenia">neutropenic state</a> and I will be momless. Jon has to keep working or else we will lose everything and while my MIL is a huge help to us in getting me to and from appointments and spending time with the kids, she doesn't live in our house (nor do I think she wants to...which is ok by me). <br />
<br />
And today I wouldn't just be losing my mom..sob. There would be Hannah leaving too..double sob. The final blow would be Allison and Tammy's departure..full on body sob!<br />
<br />
Thankfully my time to say goodbye to my mom and Hannah was really short and quick. Kind of like pulling a bandaid off really fast to make it hurt less. They had a flight to catch and the hospital was on the way. I had to go down to the lobby to kiss Hannah goodbye because she is under the age limit for being able to come up to my room. My mom and I teared up but Hannah seemed to just want to get out of there and on with the rest of her summer plans. Dang kids!<br />
<br />
Allison and Tammy didn't stop by before hitting the road. I would have liked to have another opportunity to thank them both and spend a little time with them. Probably better that they didn't since I was emotional enough already dealing with the mom and daughter leaving.<br />
<br />
One of my favorite nurses (because there are A LOT on this stay) Nina went to a local bakery and got a bunch of cupcakes. She brought me the most gorgeous and delicious red velvet cupcake to drown my sorrows. She said that sometimes you just need to have a "fat girl party". I had to know what the story to that comment was because she was no where near being fat or large in any sense of the word. She then divulged that she used to be overweight and had gastric bypass surgery. While she can't eat like she used to and wouldn't want to return to, she does allow herself a "fat girl party" every once in a while which means she'll eat a whole cupcake or huge piece of cake. I didn't care what she called it...that cupcake was amazing and helped heal my sorrows. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq-nCPEWuZfAJOIsv5fl_C13A6rBFfmSQY10mRmA_ANpbJYLmp0DoRM4k3JeXX-abC0cZnQU6XzjmI3iDS6q0jJz1pwoPxlHBeCun8kLczGfHRmzlNfDZKsrR6hEj2yXcj0eq_hAiSS0Y/s1600/IMG00356.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq-nCPEWuZfAJOIsv5fl_C13A6rBFfmSQY10mRmA_ANpbJYLmp0DoRM4k3JeXX-abC0cZnQU6XzjmI3iDS6q0jJz1pwoPxlHBeCun8kLczGfHRmzlNfDZKsrR6hEj2yXcj0eq_hAiSS0Y/s400/IMG00356.jpg" width="400" /></a></div><br />
After dropping my mom and Hannah at the airport Jon came back to spend a little time with me. These visits are rare because he works so much and the drive to and from the hospital is a lot to take on after putting in a 10+ hour work day. Then there is the matter of taking care of the kids and keeping up with things at the house. By the time it is all said and done there just aren't enough hours in the day to fit in everything that either of us would like to have happen.<br />
<br />
So getting a visit, that included ice cream and Chili's take out, was just what we both needed. Jon stayed until the nurse came to give me my sleep medication. Hello Ambien. Good night Jon!<br />
<br />
<b>June 14, 2010</b><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixjdaCC8Vr_weBf7O3JsCmy34AARiSBlO5Ml0Ee43XaFZjg8lCY8tzZfaQeqw196EXjHtR28HkeBe2cBDPnKKdNz0UK9yUDboGWu-nvmU0hgwp2_LRlb-Bk_2gbIvRN19HSyZ6juDJqkk/s1600/IMG00368.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixjdaCC8Vr_weBf7O3JsCmy34AARiSBlO5Ml0Ee43XaFZjg8lCY8tzZfaQeqw196EXjHtR28HkeBe2cBDPnKKdNz0UK9yUDboGWu-nvmU0hgwp2_LRlb-Bk_2gbIvRN19HSyZ6juDJqkk/s400/IMG00368.jpg" width="400" /></a></div>Day 5 of being in the hospital and I am still managing to be able to smile. I'm thinking its a good sign. Side effects have been so mild on this go around. I hope this is how all of my remaining treatments will go. I think a large amount of credit goes to the doctors and nurses so I may just need to kidnap all of them and take them home with me to ensure that I get the exact staff on the next stay.<br />
<br />
Good thing my MIL cleaned up and organized our garage cause I'm pretty sure that is where I will have to stash them all. <br />
<br />
<b>June 15, 2010</b><br />
<br />
Rough night last night. I couldn't sleep to save my life. The sleep medication did nothing and the pain on my left side from my unruly spleen was breaking all sorts of pain records. At one point today I got up to use the restroom and actually had to use the nurse call button that is located next to the toilet. I had gone in for a routine pee session and the next thing I know I'm hunched over in excruciating pain, with the room spinning and me feeling like I was gonna pass out.<br />
<br />
Good times. <br />
<br />
Nothing more embarrassing than having to be scooped up off the hospital bathroom floor with your bare ass in the air. Lucky for me I was able to get my underwear up before I almost went ass over teacup, but still the thought was enough to make me want to limit my fluid intake, thus lessening the possibility of this situation repeating itself again. <br />
<b><br />
</b><br />
<b>June 16, 2010</b><br />
<br />
I was supposed to get discharged yesterday afternoon when my last bag of chemo finished, but I ended up needing 2 units of blood. The transfusion ran too late into the evening for the doctors to want me released. I actually slept pretty good thankfully and now I'm ready to get up on out of here. I've already packed up my stuff and changed into my clothing. Feels nice to have something covering my ass again.<br />
<br />
It's going to be so weird at home without my mother. I'm a little worried about how things will go with no one to look after me during the day. I know that I'm not a complete invalid by any standards but I still feel so weak all of the time and it makes both myself and Jon feel better when there is someone here to check to see that I am breathing, eating, sleeping (but not comatose) and generally just functioning.<br />
<br />
I guess all this responsibility will fall onto the very capable shoulders of my sweet Penny dog.....<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh94SAndlhvybqnQEfM_dZPGNHmX7LAUjOT59tnmSu-FYhjGJ2kPiGN8tO872shjcj9hrC4dnvc1KmQB_J4hc0Bp7QEjLa-1_CdJPUeVVjyZ_gR6emu2tWrC7PygOk6xXvxgHSRUWNWj0E/s1600/001-7-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh94SAndlhvybqnQEfM_dZPGNHmX7LAUjOT59tnmSu-FYhjGJ2kPiGN8tO872shjcj9hrC4dnvc1KmQB_J4hc0Bp7QEjLa-1_CdJPUeVVjyZ_gR6emu2tWrC7PygOk6xXvxgHSRUWNWj0E/s400/001-7-2.jpg" width="400" /></a></div><br />
I TOTALLY think she can handle it. However if you don't see a post from me in the next few weeks please send help. Ya know...just in case she can't handle my day to day care.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-12473570288533151012010-06-18T20:11:00.000-05:002010-06-18T20:11:18.827-05:00A change for the better....June 10, 2010<br />
<br />
Last night would have been a great night to have sleeping medication because I couldn't quiet my mind long enough to get any rest. Since my Medicaid status is still pending I am not able to return to Tulane for treatment. While the slow process of government aid took it's sweet ass time to figure out if I was deserving of coverage, I was able to get approved (based on my diagnosis and the medical debt to income ratio) for a program called Louisiana Free Care. <br />
<br />
This program would allow me to be seen at University Hospital and it's clinic for everything from my PICC infusion to inpatient chemotherapy with little or no charge. After being hit with just over $350,000 in medical bills thus far, this program was a welcome piece of news. The most important part to me was that I stayed current with treatment. I've been fortunate thus far to have clean biopsies and labs but things can change in the blink of an eye.<br />
<br />
Being diagnosed with cancer is enough to put someone over the edge, add to it the anxiety of not knowing where you will get treatment and what doctors you will see and you have the makings of a certifiable looney toon. Yep...another thing to push me over to the crazy side. <br />
<br />
Being admitted to University Hospital instead of Tulane for my next round of chemotherapy was the least of my worries. I also had to deal with the fact that I would not be treated by my oncologist because she was a Tulane doctor. Then to ice my cake of possible neurotic breakdown my doctor had told me that I would need to arrive early to the hospital and "wait until they had a bed ready for me" because it is "first come first serve". <br />
<br />
Oh hell to the NO! <br />
<br />
As I shuffled around my bedroom this morning trying to decide what to bring with me for this hospital stay all I could do was laugh at how it never stops being an adventure in my life. My mom came in to check on me and prod me along. The one big upside to having cancer is that I can get ready to leave super fast. Brush teeth, wash face, put on clean clothes....done! Packing was pretty quick too.<br />
<br />
On my list...lots of underwear, journal (because I wasn't sure about taking my laptop), pens, pillows, socks, toothbrush...blah, blah, blah. Pretty exciting stuff. <br />
<br />
When we got to the hospital the woman by the registration kiosk greeted me and asked if I was back for another appointment for my PICC line. My mom and I have been there so much at this point that they know us by face. I let her know that I was there to be admitted for chemo. Her smile diminished and for a second I got worried. She looked me in the eye and said quietly, "you do know that it may take all day before there is a bed, right?"....oh lord...I swallowed hard, nodded and smiled. After swiping my drivers license at the registration kiosk my mom and I took a seat and settled in for the wait. <br />
<br />
My mom offered me something to eat but I was so nervous that I was afraid if I ate I'd start throwing up and that would make the wait miserable. I felt like I had better control of the situation on an empty stomach. Probably not the most brilliant logic but it was working for me right then. Before I had more time to think about it my name was called. <br />
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At first my mom and I thought we had imagined it, but then we heard it again loud and clear. We made our way into the registration office and signed all my admissions paperwork and I got my arm band. We were told that my room would be ready at 10am, which was only an hour away. I let out a sigh of relief and saw that my mom was a little more relaxed which allowed me to focus on the next hurdle...seeing who would be treating me.<br />
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At a little after 10am we were lead to the 7th floor and my room for the next week. The nurse took me to be weighed, got me a gown and did some paperwork. The room was smaller than the one at Tulane but it had a recliner in it for visitors and the big plus...it had a bathroom. With toilet paper! No potty on a bucket seat for me!! <br />
<br />
I got into my gown and settled into the bed to await the introduction of my doctors. The first doctor to come in was the Internal Medicine doctor that would be lead on my case in regards to pain management. She immediately put my mom and I at ease. Her name was Dr. Echols and her smile was infectious with a calm and thorough demeanor that made me feel as though she genuinely cared about getting me through this in the most comfortable manner possible.<br />
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The next doctor to come in was the Hemetologist/Oncologist, Dr. Lewis. He would be taking the place of my current treating doctor since she wasn't an attending at University Hospital. He looked very familiar to me but then again I had just been in the clinic yesterday and he probably saw patients over there too. Both doctors wanted to discuss concerns for this round of treatment and I immediately said one of my biggest issues is nausea. It was as if someone flipped on a light bulb in Dr. Lewis eyes because he fixed his gaze on me and said "wait a minute, you're the patient that I put on marinol at Tulane because you had horrible nausea during chemo".<br />
<br />
Both my mother and I shouted "YES" at the same time. I couldn't believe that out of all the doctors that I could have gotten to be treating me I was able to get the one that had been the most helpful to me when I was inpatient at Tulane. More doctors and med students filed in and did their exams and questions. Dr. Lewis asked if I was ready to get started or if I wanted to wait until the morning. I'm not sure if he was really leaving it up to me to decide but I felt empowered just by the fact of him asking. I smiled and told him I was ready to roll.<br />
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They had to have radiology come and make sure my PICC catheter was placed properly since they weren't the hospital that had put it in. Once we got the all clear from the film and redressed the site they went over all the risk associated with this protocol. I was going to have to have steroid drops put into my eyes every 6 hours until the chemotherapy was complete because this drug, cytarabine, if secreted into the eye could cause blindness. There was also the possibility that the drug could cause neurological distress and possibly death. <br />
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I had to stop myself from laughing out loud because of the irony. I was being advised of the potential of death from the medication being given to me in order to rid my body of a disease that if left untreated will result in death. My mom didn't think my laughing was funny when the doctor asked if I had a Living Will and I responded that I wanted to be "DNR" (do not resuscitate). For the first time since my diagnosis we were actually having a discussion that included the possibility of me not surviving.<br />
<br />
I wouldn't say that I haven't let myself think about the fact that treatment may not work or that something could go wrong. I understand that there is a possibility of death. That thought has occupied more of my waking hours in the past several weeks than it has in my entire life thus far. That being said I also know that I don't want to be kept alive on a vent. It was painful for my mom to hear and I hated to have to say it especially since she leaves to go back to Georgia in a few days. <br />
<br />
It's not a place that I want to visit often but it needed to be done and thankfully once the discussion ended the nurse came in with the pre-medications for the chemo, one of which was Ativan for anxiety. Once my mom saw that I was in good and capable hands she left for the night and I was alone to start the first bag of chemotherapy.<br />
<br />
The room was quiet with the exception of the whir of the IV pump and before I realized it I was drifting off to sleep.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-66749785726400984932010-06-09T23:59:00.000-05:002010-06-09T23:59:27.183-05:00Give and take...Sometimes when I feel completely stressed by the weight of this diagnosis and the mounting cost to essentially give me the possibility of a long and healthy life, my only means of escape is to pretend that I'm not REALLY a cancer patient, I just play one in the parallel version of my life. Of course that type of mental vacation only works when I'm not heaving my guts into a plastic bin, light headed from any number of things, anxious at upcoming test or treatment, having trouble sleeping and/or sitting at one of my numerous doctor's appointments. <br />
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These little mental outings would probably work better if I was on Xanax or Ativan but once again we must remind ourselves that I have been given the Oncologist that is hell bent on me remembering every gut wrenching turn of this whole insane ride. Yep, I'm blessed like that...don't be jealous.<br />
<br />
Since being home I've allowed myself to slip into the "normalcy" mode where I am delusional enough to believe that I am in control of my life and the things that happen in and around it. Again, these moments would be less painful to rebound from if I had a medicinal parachute, so to speak. That way I could be let down gently instead of plummeting to the ground. Apparently I got a little overzealous because I assumed that since I was feeling really good this week, which was a first since being discharged from Tulane, that I would be able to make plans. And then I was stupid enough to believe that I would be able to keep them.<br />
<br />
Yesterday I woke with a slight fever so I immediately had to scrap plans to head over to my best friend Mar's office in order to thank her boss and other city workers for their time and blood donations. It's really important to me that people know just how much both my family and especially me are so humbled and grateful by the outpouring of support. <br />
<br />
Today was the first day of the fundraiser at a Le Cafe de Bon Temps and I was looking forward to having lunch there with my mother and two daughters as well as having dinner tomorrow with my husband and some friends. The owner of the restaurant had agreed to take 10% of revenue from lunch and dinner for two days and donate it to assist with the rising cost of treatment. On top of those plans, my very best friend since childhood would be making a 6 hour drive to come and throw my oldest daughters 16th birthday party on Saturday. Then on Sunday my mom, who has been my rock to this point, would be flying back to Georgia and taking my youngest daughter with her to spend the summer.<br />
<br />
I was excited that more of my days housed time with family and friends as opposed to clinic and doctor's visits.<br />
<br />
I had been feeling so horrible when my dad and sister came to visit over Memorial Day weekend that I was looking forward to having visitors and actually being able to be up and about. Everything was going great until I got a phone call from my doctor on Tuesday afternoon. I was already a little emotional before getting the call because of having to postpone my visit to see my friend and her co-workers. So when I missed the incoming call and was left to decipher what the message said it was almost enough to put a girl over the edge. <br />
<br />
Then I spent another hour trying to contact my doctor back so I could get further information. While I do think that my doctor is good and thorough, I am hung up on two things....her inability to speak clearly to me and the fact that she is so against any type sedatives or pain medication. She is out of her ever loving mind if she thinks I am going to just bite the bullet through all of this. <br />
<br />
I finally managed to reach her and was told the results of my latest bone marrow biopsy were in and instead of just telling me what the results were she was insistent that I come in to the office.<br />
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She had scheduled an appointment for me at 8:30 a.m. on Wednesday. She kept repeating Wednesday at 8:30 a.m. like I was either deaf or a complete idiot. I almost had to stop myself from saying, "it's on Wednesday right...like the day after today but before the next day? And it's at 8:30 a.m., like morning time, not to be confused with night time?", but I figured that would only frustrate me more and the humor would be completely lost on this woman.<br />
<br />
I was more than a little pissed that she wouldn't just tell me what the results were. I asked her if I had to have labs drawn or anything of that nature that would necessitate me actually physically having to go to the office, to which she answered no. This is all fine and great if a simple doctors visit to get test results meant just driving to the other side of town and popping in to hear the results. All of which, in the world of private health care takes all of maybe an hour. Unfortunately, for myself, my mother...our butts that have to sit in uncomfortable chairs and our nerves that are frayed to the point of possibly breaking, our day was going to start early and take several hours.<br />
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I tried to think happy thoughts but trying to pretend that I wasn't a the cancer patient whose life and whose family's life has been turned upside down, was proving a bit more difficult today. Sadly, every time I think we are getting the pieces back into some semblance of order the disease rears it's ugly head and reminds me that both it and my health care team are the one pulling all the strings.<br />
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I'd like to say that I waited patiently in the clinic to be called, but if God is trying to teach me the lesson of patience he needs to hurry the fuck up. It is completely unnerving when you are told that there are test results that you know can have a bearing on your life...like your actual physical life of being in existence on this planet and then you are told, "I'd rather discuss these results in person"...yeah, the I'M FREAKING OUT factor goes up about a million notches.<br />
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Finally after 4 1/2 hours of waiting....seriously people if anyone reading this in uninsured, you have been forewarned...no private health care coverage equals you will sit and wait until the end of eternity. Just a little health care tip from me to you...your welcome America. So after we had put in our time I was rewarded with the news that my bone marrow had come back clean. <br />
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And now I can release the breath I had been holding since yesterday when getting the phone call. <br />
<br />
Then the doctor comes at me with the news that since my results were clean of any blasts which are the leukemia cells I would need to start the next phase of chemo therapy. GOOD NEWS!<br />
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She went on to tell me that since I had been responding so well to the initial round of chemo that I'd had back at the time of my diagnosis, there was a possibility that we were only looking at another 5 rounds of chemo, one of which would be coming up really soon, in order to get me into full remission. GREAT NEWS!<br />
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I thought this all sounded like AMAZING news...until she told me I would be expected to be admitted on Thursday. Ya know like the day after TODAY! <br />
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In that split second I felt all the positive vibes of having plans and things to look forward to just seep right out of me. It became clear once again that I am not in the driver seat at all times when it comes to battling this disease. I am going to have times where I am at it's mercy or the mercy of the drugs used to rid my body of it. <br />
<br />
While my heart breaks at all the little things I will miss....<br />
<br />
- Celebrating Olivia's 16th birthday with family and friends.<br />
- Being in my own home in my own bed.<br />
- Going to dinner with family and friends to see and thank those who are taking time out of their life and money out of their own pockets in order to help my family.<br />
<br />
...I know that my priority needs to be treatment and getting to remission. Achieving that will hopefully leave me another few decades to make up for the months spent focused on my new arch enemy...leukemia! <br />
<br />
As long as this cancer understands that I will give it time out of my life but NOT my life in general then we should have no problems. I can give it time. I can even give it the itty bitty hairs that have started to grown back on my once bald head. It can have almost all my energy and some of my sanity (although there isn't much of either) but it cannot have my spirit or my existence. That's just where I draw the line at the give and take.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0tag:blogger.com,1999:blog-4922258437973431881.post-28130874822818067982010-06-07T02:18:00.002-05:002010-06-07T02:19:03.105-05:00It's the little things....May 28, 2010<br />
<br />
Today would be day #3 that we, my mother and I, have had to make the journey into New Orleans. The appointment this time would be to have my PICC line flushed and the bandaging changed. We arrived early in order to register and found that our wait was fairly short.<br />
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After taking the elevator up to the 8th floor and getting slightly lost we came to the desk of the oncology nurses. I immediately knew that I was gonna like my visits with these ladies the most. We were greeted with smiles and the most jovial of attitudes. It put both my mother and I at ease.<br />
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Another thing that was making me so happy today was the fact that my father, sister and my sisters boyfriend had made the journey from Georgia's east coast to come and surprise me with a visit over the Memorial Day weekend. All I cared about was getting through this appointment and getting home to spend time with my family. It was the first time that my whole family (with the greatly missed exception of my oldest daughter who was off on a visit with her biological father for two weeks).<br />
<br />
I was weighed in and then sent to a room where the nurse came and flushed each of the lines in my PICC. She made sure there were no clogs and that she could get a good blood return for when they needed to draw labs. This made me think of the horrendous experience I had during the first clinic appointment when I passed out when the technician said that I'd have to be stuck in order to give blood. I must have shuddered a bit because the nurse, Theresa, immediately softened her touch and asked if she had hurt me.<br />
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I laughed and said,"nope...just wondering why the nurses across the street at the clinic can't use my PICC to draw my labs...cause I'm a fainter". Theresa looked at me and said, "oh hun you better tell them girls to get a nurse that can pull from your PICC cause you don't need to get stuck". I wanted to hug her or put her in my pocket. Anyone that doesn't want to stick me with a needle or supports me not wanting to get stuck with a needle is definitely in my newly formed "people that I've met since being diagnosed with cancer circle of friends".<br />
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The rest of the appointment went smoothly and as we were set to leave Theresa made sure we took some information on my diagnosis and then pulled out a bag that contained hats that had been crocheted by volunteers. She put the bag in front of me and looked up at my bald head and said, "you should pick one because your head might get cold". I laughed a little because the temperature outside was making it's way into the 90's. But I smiled and sorted through the bag finding one that seemed perfect.<br />
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I was struck by how overwhelmed I felt at this gesture. I thanked them and told them I would see them next week and for once I actually found myself looking forward to an appointment that had to do with my illness.Jesshttp://www.blogger.com/profile/08488589164126340372noreply@blogger.com0