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......
Showing posts with label leukemia. Show all posts
Showing posts with label leukemia. Show all posts
Tuesday, February 1, 2011
Wednesday, October 27, 2010
Don't make promises you can't keep, but more importantly...never say never
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!
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 "Tales from the Crapper") had been turned into an arduous non multi-tasking catastrophe.
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!!!!
Monday, June 28, 2010
You've got some spleening to do....
June 23, 2010
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.
Sadly I would be getting neither and thankfully no rectal probe necessary.
Sunday, June 27, 2010
Home alone....
June 17, 2010
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.
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.
Hmmmmm.....lemme think on this for a sec. Is anybody else screaming "get a new doctor" in their head too?? Just wondering.
So I was prescribed 5mg of ambien. Such a teeny tiny pill....but oh how it makes this insomniac sleep.
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!
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.
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.
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.
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.
Home alone for the first time in close to 2 months. Woot woot...party!
What to do? What to do?
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.
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.
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.
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.
Hmmmmm.....lemme think on this for a sec. Is anybody else screaming "get a new doctor" in their head too?? Just wondering.
So I was prescribed 5mg of ambien. Such a teeny tiny pill....but oh how it makes this insomniac sleep.
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!
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.
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.
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.
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.
Home alone for the first time in close to 2 months. Woot woot...party!
What to do? What to do?
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.
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.
Friday, June 18, 2010
A change for the better....
June 10, 2010
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.
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.
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.
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".
Oh hell to the NO!
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.
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.
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.
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.
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.
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!!
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.
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".
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.
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.
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.
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.
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.
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.
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.
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.
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.
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".
Oh hell to the NO!
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.
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.
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.
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.
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.
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!!
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.
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".
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.
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.
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.
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.
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.
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.
Monday, June 7, 2010
To sedate or not to sedate?? Yeah, I totally have the meanest doctor EVER!
May 27, 2010
As I was beginning to drift off into a much deserved sleep following yesterdays whirlwind first day of clinic visits my cell phone began to ring. I had almost, without much thinking, moved to hit the "ignore" call button on my Crackberry but saw that it was a (504) number and that made me think it may be the clinic. I was awaiting the results of my counts because my doctor didn't have them when I had finally made it through the marathon wait to see her.
I suspected it had something to do with the fact that the time between when the blood was drawn and when I made it into a room to actually see my doctor, in my mind, was not enough time to run the lab work and get the results. But who am I to say that their whole system was broken?
I'm just the lowly cancer patient who spent the better part of the day being bounced from room to room and went home with no clue as to what was to happen next in regards to my treatment. All I was armed with was an appointment to have my PICC line flushed and dressing changed two days later, as well as a follow up appointment to see the oncologist on June 16th.
I had gone from being checked, poked, medicated and monitored 24/7 for 28 days and now all I had were two appointments in the next couple weeks. It was a little unnerving. If I was looking for a "wham....bam...now you're in remission ma'am" type of experience I was going to be very let down. I was quickly learning that patience was a virtue that I really needed to master in order to make it through all of this.
I picked up the phone and was greeted by the familiar and broken English of my doctor. Great, not only did I have to get the doctor that feels sleeping medication is a sure sign that your gonna off yourself, I was also blessed with one that I had to have repeat things and at times spell the word in question.
Thankfully I got the first part of the news in almost perfect dialect therefore allowing me to learn that my counts looked great. The problem came with the following part.
It was almost like a verbal word game.
She would say the phrase and then I would try to interpret what it was that she was saying. This may not have been so frustrating if she wasn't talking about...oh, I don't know...my life! The few words that I could pick up were "biopsy", "urgent", "don't be late" and "tomorrow".
Everything else like "where", "when", "who would be performing the procedure" were much, much, MUCH harder to understand. It took an additional 10 minutes to learn that she wanted me to come for a bone marrow biopsy on the 27th.
Tomorrow. Got it.
I would need to be there by 12p. Got it.
The doctor that would be performing the test was a colleague of hers and would be doing it before going out of town for the Memorial Day weekend. Took a few tries...but got it.
It was imperative to have the test done now so we could see if my marrow has rebounded in order to start the next phase of treatment. A bit more difficult and admittedly not sure what all the rush was about for this doctor to do the test before he left on vacation especially when my counts were good...but she's the doctor and I'm the patient, so...got it.
The last part proved to be the hardest which was what part of the hospital I needed to report to for the procedure.
Me: Where do I need to report for the test?
Doctor: Fuhst flo
Me: Ok..on the first floor?
Doctor: Uh..yes.
Me: What is the name of the department? Is it oncology?
Doctor: No. You go to fuhst flo...(and this is where the game begins because at first listen I swore she said the following) and BDT.
Me: Ok. First floor...and was that BDT, like B for boy, D for dog and T for Tom?
Doctor: Ugh no. You go to fuhst flo...
Me: (slightly peeved that she is insistent on repeating the one part of the equation that I already understand, but trying to remain calm thinking that surely since I spelled it out with words that represented the letters in question that she would follow my lead and becoming increasingly aware of the fact that she sort of sounded like the Chinese woman saying "and then" on Dude Where's My Car..this may not end well)
Doctor: Uh...fuhst flo..DDT.
Me: Ok...let me just make sure it's D for dog, D for dog and T for Tom??
Doctor: Fuhst flo...
Oh DEAR GOD female Jackie Chan...I got that part....what I need to know now is the last part. The actual department that I report to.
Doctor: Its D as David, T as tea and D as David.
Ding, ding, ding...we have a winner!!
I thanked her for calling me and getting me in for the biopsy so quickly. I then asked if there was anything I needed to do in order to prepare for the procedure since the last two biopsies I had while inpatient at Tulane, I didn't know if there was a different set of rules for an outpatient procedure. She assured me that I would be in an out in a few hours and didn't give me any other instructions.
We arrived at University Hospital about an hour before the procedure in order to register. I was more nervous about being late for the actual biopsy appointment than I was having the procedure itself done because my doctor had been so adamant that this colleague would be leaving to go out of town. It almost seemed like I was playing beat the clock because the waiting system that had plagued us at the clinic was in full glory just across the street at the hospital.
My mom kept reassuring me that things would be fine and soon we were called to register. Once again we came face to face with the reminder that I needed to find out my Medicaid status or unearth a money tree because...tick, tock, tick, tock...we were now at 9 days and counting before we would start getting hit with my clinic and now University Hospitals bills for treatment. Way to suck the wind out of my sails people.
We finished registering. I got my orders and made my way to where I would be having the biopsy.
The room was freezing, but the nurses were so nice. I undressed and slipped on the hospital gown as instructed and attempted to wrap my now shivering legs in the thread bare sheet that was provided. I heard the nurse call my name from the other side of the curtain and then ask if I was changed. I advised her that I was and then she asked if I would like a blanket. I had to stop my teeth from chattering long enough to say yes.
As she pulled back the curtain and covered me with a blanket she asked me if I had this procedure done before. I advised her that this would be my third biopsy. Her next question was one that struck me as odd.
Nurse: Are you having sedation for your procedure?
Me: Ummm. Yes. I mean...ummm, I had sedation for the last two, so I would assume I am.
Nurse: Oh. Hmmm. Okay. Well the doctor should be with you shortly. (and with that she pulls the curtain closed)
I sit on the other side pondering what the hesitation in her voice meant but don't have to wait long because I hear the nurse talking to another nurse about how "this patient thinks she is having sedation for her biopsy but there are no orders written". They kept talking about it as if they had shut the door on a cinder block room where I was inside and unable to hear a word of what they were discussing. When in fact I could hear every word, every sigh and every squeak of their shoes as they walked away.
I wanted to yell out...I can hear you! But figured that agitating anyone that will be sticking a needle anywhere close to my body was probably not the best idea.
The next time the curtain opened I half expected to see the whispering nurse but instead met the face of the two doctors that would be doing the procedure. While I was trying not to allow myself to be anxious over the fact that the nurse was under the impression that I had no sedation orders for this test I became increasingly nervous over the fact that the only thing these doctors had to go on in regards to my care was a sheet of paper with the order to do the biopsy and the type of leukemia I had been diagnosed with.
Thankfully, for me and my health, I am a good listener and note taker because every question with the exception of what type of chemotherapy I had while at Tulane was able to be answered by either memory or my calendar that I carry with me. Being led through a question and answer session before being stuck in the hip with something resembling a hollow icepick may unnerve some people and I was....honestly very much in that some people category.
The doctor could read my hesitation and anxiety like a bold faced book with pictures and quickly dug into his scrub pocket to find his cell phone so that he could call my oncologist. After his second attempt he got her on the phone. His approach was so matter of fact that part of me wanted him to put her on speaker phone so I could hear her response to each of his questions. Especially when he fired off questions and phrases like "I'm gonna need a little more history other than what is on this piece of paper" and my favorite "you expect me to drive a needle into YOUR patients hip while she is fully conscious and had nothing more than lidocaine to dull the pain".
He then asked me if I would prefer to have the procedure with or without sedation? I told him that I'd prefer to have the sedation.
He asked me if I understood that I would still be conscious and awake, just like the previous two? I told him that I did.
He then asked me if I would mind waiting until Tuesday, June 1st to have it done because my doctor, in ALL of her infinite oncological (totally my made up word) wisdom, had failed to A) write sedation orders and B) while she could authorize it over the phone, which sounded like a brilliant plan to me, she hadn't told me to not eat or drink anything after midnight so that I wouldn't possibly choke and die while mildly sedated.
So lets see....my options are to do the biopsy now, white knuckling it with a doctor that doesn't want to do it without sedation therefore increasing my own anxiety at the fact that he is now possibly nervous while driving a needle and other instrument into my hip bone -OR- I can wait a few extra days and have the test done while I'm relaxed from medication and the doctor is relaxed due to the fact that I am relaxed?
Ahhhh....yeah....it's a no brainer! What time you want me here on Tuesday?
I thanked the doctor for his time and of course apologized because I felt bad over the fact that I felt as though he wasted his time with all this calling of my doctor crap. I mean seriously...what kind of doctor sends someone to have this type of procedure without thinking about their comfort?? Ugh....
The doctors left and closed the curtain behind them. I scrambled to get dressed and waited for the nurse that would come and discharge me. Another few minutes and I was making my way out to find my mom. She seemed surprised to see me so soon and when I told her why I was done so quickly her surprise turned to the same disbelief that I had.
I contemplated just jabbing my doctor randomly the next time I see her and then later asking her if she would have preferred to be sedated. I was pretty sure the humor would be lost on her and that i may possibly delay my treatment and result in criminal charges, so I quickly filed that thought under "not right now but maybe in the near future".
I tried not to let it bother me too much. Being frustrated takes too much of my energy and that is something that is a precious commodity nowadays. I decided instead to be grateful for the fact that at least our entire day hadn't been consumed by this appointment and that the conclusion would find me home resting with my family.
As I was beginning to drift off into a much deserved sleep following yesterdays whirlwind first day of clinic visits my cell phone began to ring. I had almost, without much thinking, moved to hit the "ignore" call button on my Crackberry but saw that it was a (504) number and that made me think it may be the clinic. I was awaiting the results of my counts because my doctor didn't have them when I had finally made it through the marathon wait to see her.
I suspected it had something to do with the fact that the time between when the blood was drawn and when I made it into a room to actually see my doctor, in my mind, was not enough time to run the lab work and get the results. But who am I to say that their whole system was broken?
I'm just the lowly cancer patient who spent the better part of the day being bounced from room to room and went home with no clue as to what was to happen next in regards to my treatment. All I was armed with was an appointment to have my PICC line flushed and dressing changed two days later, as well as a follow up appointment to see the oncologist on June 16th.
I had gone from being checked, poked, medicated and monitored 24/7 for 28 days and now all I had were two appointments in the next couple weeks. It was a little unnerving. If I was looking for a "wham....bam...now you're in remission ma'am" type of experience I was going to be very let down. I was quickly learning that patience was a virtue that I really needed to master in order to make it through all of this.
I picked up the phone and was greeted by the familiar and broken English of my doctor. Great, not only did I have to get the doctor that feels sleeping medication is a sure sign that your gonna off yourself, I was also blessed with one that I had to have repeat things and at times spell the word in question.
Thankfully I got the first part of the news in almost perfect dialect therefore allowing me to learn that my counts looked great. The problem came with the following part.
It was almost like a verbal word game.
She would say the phrase and then I would try to interpret what it was that she was saying. This may not have been so frustrating if she wasn't talking about...oh, I don't know...my life! The few words that I could pick up were "biopsy", "urgent", "don't be late" and "tomorrow".
Everything else like "where", "when", "who would be performing the procedure" were much, much, MUCH harder to understand. It took an additional 10 minutes to learn that she wanted me to come for a bone marrow biopsy on the 27th.
Tomorrow. Got it.
I would need to be there by 12p. Got it.
The doctor that would be performing the test was a colleague of hers and would be doing it before going out of town for the Memorial Day weekend. Took a few tries...but got it.
It was imperative to have the test done now so we could see if my marrow has rebounded in order to start the next phase of treatment. A bit more difficult and admittedly not sure what all the rush was about for this doctor to do the test before he left on vacation especially when my counts were good...but she's the doctor and I'm the patient, so...got it.
The last part proved to be the hardest which was what part of the hospital I needed to report to for the procedure.
Me: Where do I need to report for the test?
Doctor: Fuhst flo
Me: Ok..on the first floor?
Doctor: Uh..yes.
Me: What is the name of the department? Is it oncology?
Doctor: No. You go to fuhst flo...(and this is where the game begins because at first listen I swore she said the following) and BDT.
Me: Ok. First floor...and was that BDT, like B for boy, D for dog and T for Tom?
Doctor: Ugh no. You go to fuhst flo...
Me: (slightly peeved that she is insistent on repeating the one part of the equation that I already understand, but trying to remain calm thinking that surely since I spelled it out with words that represented the letters in question that she would follow my lead and becoming increasingly aware of the fact that she sort of sounded like the Chinese woman saying "and then" on Dude Where's My Car..this may not end well)
Doctor: Uh...fuhst flo..DDT.
Me: Ok...let me just make sure it's D for dog, D for dog and T for Tom??
Doctor: Fuhst flo...
Oh DEAR GOD female Jackie Chan...I got that part....what I need to know now is the last part. The actual department that I report to.
Doctor: Its D as David, T as tea and D as David.
Ding, ding, ding...we have a winner!!
I thanked her for calling me and getting me in for the biopsy so quickly. I then asked if there was anything I needed to do in order to prepare for the procedure since the last two biopsies I had while inpatient at Tulane, I didn't know if there was a different set of rules for an outpatient procedure. She assured me that I would be in an out in a few hours and didn't give me any other instructions.
We arrived at University Hospital about an hour before the procedure in order to register. I was more nervous about being late for the actual biopsy appointment than I was having the procedure itself done because my doctor had been so adamant that this colleague would be leaving to go out of town. It almost seemed like I was playing beat the clock because the waiting system that had plagued us at the clinic was in full glory just across the street at the hospital.
My mom kept reassuring me that things would be fine and soon we were called to register. Once again we came face to face with the reminder that I needed to find out my Medicaid status or unearth a money tree because...tick, tock, tick, tock...we were now at 9 days and counting before we would start getting hit with my clinic and now University Hospitals bills for treatment. Way to suck the wind out of my sails people.
We finished registering. I got my orders and made my way to where I would be having the biopsy.
The room was freezing, but the nurses were so nice. I undressed and slipped on the hospital gown as instructed and attempted to wrap my now shivering legs in the thread bare sheet that was provided. I heard the nurse call my name from the other side of the curtain and then ask if I was changed. I advised her that I was and then she asked if I would like a blanket. I had to stop my teeth from chattering long enough to say yes.
As she pulled back the curtain and covered me with a blanket she asked me if I had this procedure done before. I advised her that this would be my third biopsy. Her next question was one that struck me as odd.
Nurse: Are you having sedation for your procedure?
Me: Ummm. Yes. I mean...ummm, I had sedation for the last two, so I would assume I am.
Nurse: Oh. Hmmm. Okay. Well the doctor should be with you shortly. (and with that she pulls the curtain closed)
I sit on the other side pondering what the hesitation in her voice meant but don't have to wait long because I hear the nurse talking to another nurse about how "this patient thinks she is having sedation for her biopsy but there are no orders written". They kept talking about it as if they had shut the door on a cinder block room where I was inside and unable to hear a word of what they were discussing. When in fact I could hear every word, every sigh and every squeak of their shoes as they walked away.
I wanted to yell out...I can hear you! But figured that agitating anyone that will be sticking a needle anywhere close to my body was probably not the best idea.
The next time the curtain opened I half expected to see the whispering nurse but instead met the face of the two doctors that would be doing the procedure. While I was trying not to allow myself to be anxious over the fact that the nurse was under the impression that I had no sedation orders for this test I became increasingly nervous over the fact that the only thing these doctors had to go on in regards to my care was a sheet of paper with the order to do the biopsy and the type of leukemia I had been diagnosed with.
Thankfully, for me and my health, I am a good listener and note taker because every question with the exception of what type of chemotherapy I had while at Tulane was able to be answered by either memory or my calendar that I carry with me. Being led through a question and answer session before being stuck in the hip with something resembling a hollow icepick may unnerve some people and I was....honestly very much in that some people category.
The doctor could read my hesitation and anxiety like a bold faced book with pictures and quickly dug into his scrub pocket to find his cell phone so that he could call my oncologist. After his second attempt he got her on the phone. His approach was so matter of fact that part of me wanted him to put her on speaker phone so I could hear her response to each of his questions. Especially when he fired off questions and phrases like "I'm gonna need a little more history other than what is on this piece of paper" and my favorite "you expect me to drive a needle into YOUR patients hip while she is fully conscious and had nothing more than lidocaine to dull the pain".
He then asked me if I would prefer to have the procedure with or without sedation? I told him that I'd prefer to have the sedation.
He asked me if I understood that I would still be conscious and awake, just like the previous two? I told him that I did.
He then asked me if I would mind waiting until Tuesday, June 1st to have it done because my doctor, in ALL of her infinite oncological (totally my made up word) wisdom, had failed to A) write sedation orders and B) while she could authorize it over the phone, which sounded like a brilliant plan to me, she hadn't told me to not eat or drink anything after midnight so that I wouldn't possibly choke and die while mildly sedated.
So lets see....my options are to do the biopsy now, white knuckling it with a doctor that doesn't want to do it without sedation therefore increasing my own anxiety at the fact that he is now possibly nervous while driving a needle and other instrument into my hip bone -OR- I can wait a few extra days and have the test done while I'm relaxed from medication and the doctor is relaxed due to the fact that I am relaxed?
Ahhhh....yeah....it's a no brainer! What time you want me here on Tuesday?
I thanked the doctor for his time and of course apologized because I felt bad over the fact that I felt as though he wasted his time with all this calling of my doctor crap. I mean seriously...what kind of doctor sends someone to have this type of procedure without thinking about their comfort?? Ugh....
The doctors left and closed the curtain behind them. I scrambled to get dressed and waited for the nurse that would come and discharge me. Another few minutes and I was making my way out to find my mom. She seemed surprised to see me so soon and when I told her why I was done so quickly her surprise turned to the same disbelief that I had.
I contemplated just jabbing my doctor randomly the next time I see her and then later asking her if she would have preferred to be sedated. I was pretty sure the humor would be lost on her and that i may possibly delay my treatment and result in criminal charges, so I quickly filed that thought under "not right now but maybe in the near future".
I tried not to let it bother me too much. Being frustrated takes too much of my energy and that is something that is a precious commodity nowadays. I decided instead to be grateful for the fact that at least our entire day hadn't been consumed by this appointment and that the conclusion would find me home resting with my family.
Tuesday, May 18, 2010
Oh when my hair, oh when my hair, oh when my hair starts falling out....
I had just made it to day #14 in the hospital, which was 5 days after completing chemotherapy and I had yet to lose my hair. I didn't kid myself into believing that I wouldn't lose my hair. But with each passing day and nothing coming out I began to feel optimisitic.
I have been around enough people that have undergone chemotherapy to know that it is a side effect. So I had seen people who had lost all their hair right away, some that lost just a little and others that lost no more than a few strands.
I wasn't trying to put myself in anyone of those catagories. In all honesty I was trying not to think about it at all although it seemed to be the only thing that consumed my conversations with my mom. I knew that if and when it happened I would be emotional but really thought I would just take it in stride like I had all the other things that had been taking place since being diagnosed.
All that rational thinking flies out the window though when you wake up to a clump of your hair no longer attached to your head, sleeping oh so peacefully on the pillow beside you. I felt like someone had torn off one of my limbs.
I must have laid there staring at it for a good 20 minutes before actually picking it up and acknowledging that yes it indeed did come from my head. I started to sob. Again. For me in that moment it all became real.
You'd have thought the 7 days of tortuous chemotherapy and the side effects would have been an indicator that "yes Jessica, you REALLY have Leukemia" or even the repeated platelet and blood transfusions I was undergoing on an almost daily basis. And to a point they were. But it became a different reality with that first clump of hair.
I sat up in bed and got out my brush to try and pull my hair back into a pony tail. With each brush stroke more and more hair came out. Some were just tiny strands and others were clumps. I sat in my hospital bed holding the balled up hair that moments before had been on my head and sobbed.
It was my moms day (her and Jon's mom have been taking turns) to stay with me and as soon as she walked in the door to my room I burst into tears about my hair. She just walked over and threw her arms around me and told me how brave she thought I was and how well I was handling all of this. I thought she had gone off of her meds again because clearly she was not seeing the semi hysterical daughter clutching a fistful of hair that would not be going back onto my head.
I endured another 7 days of having clumps and strands fall out before I finally called a friend of mine who owns a salon and asked her to come and cut my hair. I was not ready to shave my head yet although I get the distinct impression that is what is going to end up happening.
As she was trying to comb through to start cutting she said it was just coming out in large amounts. I tried to keep from crying because although it's just hair and it will grow back, it is one more thing that I am having to cope with. Once she was finished I felt a bit better, mainly because I had taken control of my hair and not just waited as each day more and more fell out.
So for now this is my new do....
I'm hoping that I will be able to avoid having to shave my head and hopefully not lose anymore hair, but ya never know. All I can say for sure is that this morning was the first time since that first clump of hair was on my pillow that I woke up to nothing laying next to me. My new "do" is taking a lot of getting used to, but its nice to touch my hair and not have strands just fall off from the faintest touch.
And on the upside, I will finally know what it's like for Jon to just hop in the shower, wash his hair, towel dry and go. Always gotta look at the brightside of life's little detours....
I have been around enough people that have undergone chemotherapy to know that it is a side effect. So I had seen people who had lost all their hair right away, some that lost just a little and others that lost no more than a few strands.
I wasn't trying to put myself in anyone of those catagories. In all honesty I was trying not to think about it at all although it seemed to be the only thing that consumed my conversations with my mom. I knew that if and when it happened I would be emotional but really thought I would just take it in stride like I had all the other things that had been taking place since being diagnosed.
All that rational thinking flies out the window though when you wake up to a clump of your hair no longer attached to your head, sleeping oh so peacefully on the pillow beside you. I felt like someone had torn off one of my limbs.
I must have laid there staring at it for a good 20 minutes before actually picking it up and acknowledging that yes it indeed did come from my head. I started to sob. Again. For me in that moment it all became real.
You'd have thought the 7 days of tortuous chemotherapy and the side effects would have been an indicator that "yes Jessica, you REALLY have Leukemia" or even the repeated platelet and blood transfusions I was undergoing on an almost daily basis. And to a point they were. But it became a different reality with that first clump of hair.
I sat up in bed and got out my brush to try and pull my hair back into a pony tail. With each brush stroke more and more hair came out. Some were just tiny strands and others were clumps. I sat in my hospital bed holding the balled up hair that moments before had been on my head and sobbed.
It was my moms day (her and Jon's mom have been taking turns) to stay with me and as soon as she walked in the door to my room I burst into tears about my hair. She just walked over and threw her arms around me and told me how brave she thought I was and how well I was handling all of this. I thought she had gone off of her meds again because clearly she was not seeing the semi hysterical daughter clutching a fistful of hair that would not be going back onto my head.
I endured another 7 days of having clumps and strands fall out before I finally called a friend of mine who owns a salon and asked her to come and cut my hair. I was not ready to shave my head yet although I get the distinct impression that is what is going to end up happening.
As she was trying to comb through to start cutting she said it was just coming out in large amounts. I tried to keep from crying because although it's just hair and it will grow back, it is one more thing that I am having to cope with. Once she was finished I felt a bit better, mainly because I had taken control of my hair and not just waited as each day more and more fell out.
So for now this is my new do....
I'm hoping that I will be able to avoid having to shave my head and hopefully not lose anymore hair, but ya never know. All I can say for sure is that this morning was the first time since that first clump of hair was on my pillow that I woke up to nothing laying next to me. My new "do" is taking a lot of getting used to, but its nice to touch my hair and not have strands just fall off from the faintest touch.
And on the upside, I will finally know what it's like for Jon to just hop in the shower, wash his hair, towel dry and go. Always gotta look at the brightside of life's little detours....
Monday, May 17, 2010
Finding Chemo...
Chemotherapy Day #1 ~ Wednesday, April 28, 2010
I don't know what I thought chemotherapy was going to be like. I don't think anyone can prepare you for it. One minute you feel okay and the next minute your shivering, puking, feeling like your just gonna come unglued. Or at least that was how it was for me. Think Excorcist minus head spinning. Yeah...that sounds about right.
Before they had started running the chemotherapy drugs they went over the side effects and risk with me. I love how they always feel the need to add in that line "and possible death". Ummm, I have been diagnosed with Cancer...if you DON'T give me those stinking drugs I run the risk of "possible death", let's roll the dice shall we?
After going over side effects they let me know of the additional medicatons that they would be giving me to assist with pain management and nausea. Since I had done well with the platelet and blood transfusions I really didn't think I was gonna have a huge issue with the chemo. I was all like "I got this"!
Ignorance, really is the best kind of bliss.
About 6 hours into treatment I was having horrible nausea and they ordered compazine to help quell the overwhelming urges to vomit. I don't remember much after being given that medication. So I've had to rely on my mom to fill me in. Apparently I became extremely combative, I thought the nurses were trying to kill me and I was just generally going nuts.
My poor mother had been on pins and needles just trying to get here to be with me and here I was acting like a lunatic. Thankfully my mom stayed the night in the hospital with me which made me feel a bit better especially since where they had her bed was just on the other side of a plexiglass panel, so when I'd wake up panicked or scared wondering where the hell I was I could look over and see her sleeping and then I'd feel calm come back over me.
Chemotherapy Day #2 ~ Thursday, April 29, 2010
I'm finally beginning to feel the effects of the compazine wearing off and the nurses have assured me that they have taken that off of my medication rotation so that we don't run the risk of giving me that medication again. My nurse today is hell bent on making sure I don't stay in bed although it's all I feel like doing because this chemo is kicking my ass. She made me sit up in an overstuffed chair that is in my room and even suggested going for a walk in the halway. I gave on the chair but drew the line on walking because I felt so horrible. The nausea is one of the worst parts of the chemo but a close second is the strange areas that I am getting pains. For instance I spent most of last night thinking I had broken my toe. How I have no idea?? But still I was in dire pain and couldn't move it. But then mid morning today, it just stopped as if nothing had ever been hurting. Bizarre.
Chemotherapy Day #3 ~ Friday, April 30, 2010
Pretty quiet day today with the chemo. I had to go for another chest xray because when I breath or try to take deep breaths there is this popping feeling in my back. Sadly, I look forward to these little outings to the radiology department because other than that I am stuck here in my room or in the halls of the Bone Marrow and Transplant unit. I've been trying to eat, with no such luck. Pain seems to be all on my left side and up into my shoulder which is really strange. The doctors say that the pain in my left side is from my spleen being enlarged and that is a common issue with Leukemia patients. They are just gonna monitor it and keep pumping me with pain meds so that I can tolerate it's little antics of causing pain.
Chemotherapy Day #4 ~ Saturday, May 1, 2010
Just as I was starting to lose hope that I would never be able to eat and keep down a meal again a doctor came in to check on my case and suggested putting me on on an anti-nausea medicine called Marinol. Marinol contains a synthetic version of THC found in pot. The doctor thought that I would turn it down but I was like, "dude...if it will get it so I can eat, not throw up and make me feel a bit better....sign my ass up". Once I started that medication it was like night and day. I was able to eat without immediately throwing up and I was mellowed out. Everyone found that it was extremely fun to tease me about it but I didn't care because for once I wasn't feeling like shit.
Chemotherapy Day #5 ~ Sunday, May 2, 2010
Each day is feeling like it is running into the one before it and the one still yet to come. I still feel like this is not real. I mean I feel the IV in my neck and I see the fluids being pumped into my veins. But I still can't comprehend that I have Leukemia. I'm glad that I have my mom here and when she isn't here then Karen comes so that breaks up the long hours of waiting while the drugs do their thing. My appetite is still holding strong but I contribute that entirely to the Marinol. I swear that pill is a wonder drug. Why they didn't just start with the medication in the first place is beyond me.
Chemotherapy Day #6 ~ Monday, May 3, 2010
Ironically today was to be the day that I would have been returning back to my job full time after being sick with "mono". What a difference a week makes...but thankfully my work has been wonderfully supportive along with everyone around me. I am truly blown away with how people are coming out of the wood work to make sure my family has meals so they don't have to worry about cooking. Mar and Stacy have organized a blood drive and Jon's dealership is doing a blood drive as well. I'm just trying to focus on getting better and making it through the final days of this chemo.
I was doing pretty okay with side effects up until today when I started realizing I had some mouth sores. Not a lot but enough to be annoying. It makes eating certain things a little tricky but at least I still have an appetite, so I'm thankful for that.
Chemotherapy Day #7 ~ Tuesday, May 4, 2010
Finally finished my first round of chemo and I feel as though I've been drug behind an 18 wheeler on a gravel road. The few mouth sores that had cropped up yesterday have multiplied making eating, drinking and even swallowing hard. I have the worst nausea and vomitting that I have ever had in my life and the colors that are coming up....oh, lord...wow...seriously never knew your body could make something that putrid looking. Be grateful that I did't want you guys to have the full experience with pictures of some of my "masterpieces". The fact that I had to witness them was enough. I wouldn't wish it on anyone else.
I'm so tired. I feel as though my body has been drained of all energy and now understand what they meant when they say they take you as close to the brink of feeling like you are going to die, with chemotherapy, and then yank ya back at the last moment.
I'm in pain all over. Mostly in my mouth and throat. But there is still a constant pain in my left side and it has now been joined by a pain in my lower right side in my back. They decided to have an ultra sound to see what may be causing the pain in those areas and found that while my spleen is still enlarged now my liver is enlarged as well.
I'm trying not to freak out about it because they say it is a normal occurance with Leukemia patients. This has been a hellatious 7 days and I'm hoping that it will get better from here.
Fingers crossed....
Whirlwind of a first day....
Tuesday, April 27, 2010
Arriving at Tulane Medical felt like I was being transported into a whole different universe. A very sterile, hepa treated universe. But the nurses that were there to greet me as I was being wheeled in from the ambulance ride did everything possible to make me feel like I wasn't just some cancerous specimen being handled.
Everyone was talking so fast about my platelet and blood counts. I felt like I was going to need a translator. I was exhausted and loopy from the morphine they had given me to ease up some of the abdominal pain that I was having. I wished I had opted to make Jon come with me, because suddenly I was feeling very outnumbered and scared. I also had to repress the extreme need to just cry out for my mother.
I don't care who you are or how old you get, when the shit hits the fan in regards to your health you want you momma. And I wanted mine BAD! But it was barely 5 am and my mom had just been given the news so there was no physical way for her to get to me that fast with her in GA and me here in LA.
I made Jon go to work and act as if life was normal. I didn't want the kids to know anything until we had a definite diagnosis. I didn't want anyone to know at first because I felt like if I said it aloud then it really would be true. Basically, I was taking the approach of if we don't discuss or acknowledge it's existance then it can't possibly be happening. Very four year old I think!
Karen, Jon's mother, came to be with me and god love her for doing it because I was a wreck. From the moment I was put in the room it was a flurry of blood test, cultures, xrays, poking, proding, tell me where it hurts, where did you get this bruise and that bruise and how long have you had that mark. Stick your tongue out. Put it back in. Does it hurt to swallow? Bat your eyes. Do you feel dizzy? Do you feel nauseated? My head was spinning with all the different directions they were handing out and all I could do inside myself was just cry. Leukemia. Leukemia....I just kept repeating it in my head hoping that it would either stick and begin to make sense or that I would realize what a ridiculous notion this was and the staff would realize the errors of their ways.....we'd all have a good laugh and I'd go back to resuming my life.
No such luck.
On top of all of that going on there was a young social worker that came in to go over paperwork for possible financial options, because as if being struck with leukemia wasn't enough...I am uninsured. It's painful just to write it, let alone think what the bill is going to look like when it comes. If I had to speculate at this moment (in my high dramatic form) I see a large refridgerator box in our future as a home.
Thinking like that right now will do me no good so I pushed it out of my head and answered her questions as best as could through the flurry of commotion in the room. They were hanging blood because they said I was in need of a transfussion and all I kept thinking was I just wanna go to sleep can ya just wake me when this is all over?
If only I had known that it was just the beginning of possibly one of the longest days of my life I may have opted to sleep in the ambulance ride over instead of making small talk with the paramedic to cure my anxieties. Way to screw up another plan Jessica!
Karen tried to get me settled in as much as possible and distracted me with conversations. I was nauseated and didn't want to eat. Thankfully they didn't push that fact. I was worried because they kept mentioning that I would have to have a Bone Marrow Biopsy and I'd heard those were no fun. I don't know what my issue was at this point of being stuck again. My god, I had and IV in each arm and had every blood test and culture known to man run on me. Some with big needles and some with little. I just tried to grin and bare it the best I could but there were tears and sobs that slipped out from moment to moment.
Since they were quick to start me on a blood transfusion I had to have a nurse with me at all times for the test that they needed to run. I was bundled up in a wheelchair and whisked away to have an EKG to make sure that my heart would be strong enough to handle the chemotherapy that they would be starting just as soon as possible.
My EKG went well and then it was time for xray. By the time we made it back up to my room all I wanted to do was nap, but there was the social worker again with her clipboard and questions. I felt like screaming, "hey lady...ummm, I think you should allow the newly diagnosed cancer patient at least 24hrs before you start diving into the financials" but I was too tired to even say that.
While having Karen there was a comfort, I began to wish I had Jon with me. The day progressed on in a blur of one lab or another.
Taking my vitals. Cursing that the fever was still hanging on or going up, but never down. I had to keep oxygen on which dried out my nose and made for horrible nose bleeds which were hard to stop because I had nothing to help act as a clotting agent in my system.
Everytime I tried to get a little rest there was something new to be poked at or prodded on or another doctor to parade in and speak so fast that I literally just sat there with the most idiotic look on my face and then when they walked out was like, "huh...I hope that wasn't too important because I have NO idea what they just said".
As morning turned to afternoon and then early evening it was time for Karen to pack up and head out. I hugged her and thanked her for being there with me. As soon as she left the surgeons swooped in and so did the doctors that would be handling my Bone Marrow Biopsy. It was a little scary, for obvious reasons...ya know like the PAIN! But what I found more scary is that they were practically racing to see who could get their stuff set up first so they could be the first to do their procedure.
I felt like saying, "hold up boys...there's plenty of me to go around". But when your about to have some midevil torture device shoved into your hip bone and another team will be working very close to your jugular vein, well...you keep those smart ass comments to yourself.
Bone marrow doctors won so they did their thing first. My nurse Michelle was a god send, because withouth her I think I would have hopped off the table and taken one of the doctors out. I get the whole "big pinch...burn, burn, and then you should feel numb". Got that. What I didn't realize is that they were gonna have to do it several times and each time they were trying to actually get it down deeper into the bone.
Can someone say OUCH?!?!?!
And in case you ever wondered what Lidocaine feels like when it's injected into your ass or any other part of your body....ummmm, it's like having a mixture of hot lava and acid shot into you. Once they proclaimed me good and numb, which I totally begged to differ with, they got to work on getting out a sample of the marrow and the bone.
They decided to give me a quick run down of how the whole procedure should go from start to finish. They would mark the area where they were going to extract from, which of course was the area that they had just numbed. Then they would insert this tool, that I refused to look at or acknowledge for fear of passing out. they said there would be a pop when it went through the marrow and then another pop when it got to the bone. Finally it would be time to take a deep breath, exhale....and they pull out the sample.
Ta da...no big deal!
Yeah, right.
It sounded like a really big pencil sharpener was being used. Like the tool was the pencil and my hip was the sharpener. The pain wasn't pain as much as it was extrememe pressure and I could tell that they were working hard to get the sample. Finally, I felt the first of the two pops, then the second one and finally it was time to take a deep breath and exhale so they could remove their specimen.
I'm not gonna lie to you...it hurt like HELL, but at the end I really felt bad for the doctor because he sounded as though he had worked hard to get that sample. I just kept asking, "are you okay back there". I would hear a chuckle and so I assumed he lived. After a few minutes he exclaimed that I had really healthy bones and that is what was making it so difficult. That made me feel a bit better...at least there was something left on this damn body of mine that hadn't failed....yet.
Once thattorture diagnostic test was performed it was time to have a central line placed for my chemo, give me my other meds and to draw labs from. I had originally thought that I was going to be having a port put into my chest but my counts were so severly low they couldn't run the risk. As it was they were worried about me being able to clot just getting this line in.
If there had to be a winner out of the bone marrow and central line fiasco, it totally went to the bone marrow guys, cause at least they didn't shove my head under a sheet and suffocate me. NOT COOL, NOT COOL at all!!
There was no rest for me, once they had that line in it was time to tackle the next thing which was a treatment where they would cycle out my blood, cleaning out the bad Leukemia cells, and then reintroduce clean blood back into my system. It required a huge machine, with two nurses that were with me throughout the procedure taking my vitals. It took a little over 7 hrs to complete and as soon as it was over all I wanted to do was sleep. No such luck.
They unhooked all the lines for the treatment they had just finished and then brought in my first bags of chemotherapy. I wasn't even a full 24hrs into diagnosis and I was starting chemo. Thankfully Jon decided NOT to listen to me and came down to the hospital to see me along with Mar and Stacy. It all just seemed so surreal sitting in this hospital bed, my husband, two of my best friends and me with Leukemia.
Never in a million years how I thought I wold be spending my Tuesday....
Arriving at Tulane Medical felt like I was being transported into a whole different universe. A very sterile, hepa treated universe. But the nurses that were there to greet me as I was being wheeled in from the ambulance ride did everything possible to make me feel like I wasn't just some cancerous specimen being handled.
Everyone was talking so fast about my platelet and blood counts. I felt like I was going to need a translator. I was exhausted and loopy from the morphine they had given me to ease up some of the abdominal pain that I was having. I wished I had opted to make Jon come with me, because suddenly I was feeling very outnumbered and scared. I also had to repress the extreme need to just cry out for my mother.
I don't care who you are or how old you get, when the shit hits the fan in regards to your health you want you momma. And I wanted mine BAD! But it was barely 5 am and my mom had just been given the news so there was no physical way for her to get to me that fast with her in GA and me here in LA.
I made Jon go to work and act as if life was normal. I didn't want the kids to know anything until we had a definite diagnosis. I didn't want anyone to know at first because I felt like if I said it aloud then it really would be true. Basically, I was taking the approach of if we don't discuss or acknowledge it's existance then it can't possibly be happening. Very four year old I think!
Karen, Jon's mother, came to be with me and god love her for doing it because I was a wreck. From the moment I was put in the room it was a flurry of blood test, cultures, xrays, poking, proding, tell me where it hurts, where did you get this bruise and that bruise and how long have you had that mark. Stick your tongue out. Put it back in. Does it hurt to swallow? Bat your eyes. Do you feel dizzy? Do you feel nauseated? My head was spinning with all the different directions they were handing out and all I could do inside myself was just cry. Leukemia. Leukemia....I just kept repeating it in my head hoping that it would either stick and begin to make sense or that I would realize what a ridiculous notion this was and the staff would realize the errors of their ways.....we'd all have a good laugh and I'd go back to resuming my life.
No such luck.
On top of all of that going on there was a young social worker that came in to go over paperwork for possible financial options, because as if being struck with leukemia wasn't enough...I am uninsured. It's painful just to write it, let alone think what the bill is going to look like when it comes. If I had to speculate at this moment (in my high dramatic form) I see a large refridgerator box in our future as a home.
Thinking like that right now will do me no good so I pushed it out of my head and answered her questions as best as could through the flurry of commotion in the room. They were hanging blood because they said I was in need of a transfussion and all I kept thinking was I just wanna go to sleep can ya just wake me when this is all over?
If only I had known that it was just the beginning of possibly one of the longest days of my life I may have opted to sleep in the ambulance ride over instead of making small talk with the paramedic to cure my anxieties. Way to screw up another plan Jessica!
Karen tried to get me settled in as much as possible and distracted me with conversations. I was nauseated and didn't want to eat. Thankfully they didn't push that fact. I was worried because they kept mentioning that I would have to have a Bone Marrow Biopsy and I'd heard those were no fun. I don't know what my issue was at this point of being stuck again. My god, I had and IV in each arm and had every blood test and culture known to man run on me. Some with big needles and some with little. I just tried to grin and bare it the best I could but there were tears and sobs that slipped out from moment to moment.
Since they were quick to start me on a blood transfusion I had to have a nurse with me at all times for the test that they needed to run. I was bundled up in a wheelchair and whisked away to have an EKG to make sure that my heart would be strong enough to handle the chemotherapy that they would be starting just as soon as possible.
My EKG went well and then it was time for xray. By the time we made it back up to my room all I wanted to do was nap, but there was the social worker again with her clipboard and questions. I felt like screaming, "hey lady...ummm, I think you should allow the newly diagnosed cancer patient at least 24hrs before you start diving into the financials" but I was too tired to even say that.
While having Karen there was a comfort, I began to wish I had Jon with me. The day progressed on in a blur of one lab or another.
Taking my vitals. Cursing that the fever was still hanging on or going up, but never down. I had to keep oxygen on which dried out my nose and made for horrible nose bleeds which were hard to stop because I had nothing to help act as a clotting agent in my system.
Everytime I tried to get a little rest there was something new to be poked at or prodded on or another doctor to parade in and speak so fast that I literally just sat there with the most idiotic look on my face and then when they walked out was like, "huh...I hope that wasn't too important because I have NO idea what they just said".
As morning turned to afternoon and then early evening it was time for Karen to pack up and head out. I hugged her and thanked her for being there with me. As soon as she left the surgeons swooped in and so did the doctors that would be handling my Bone Marrow Biopsy. It was a little scary, for obvious reasons...ya know like the PAIN! But what I found more scary is that they were practically racing to see who could get their stuff set up first so they could be the first to do their procedure.
I felt like saying, "hold up boys...there's plenty of me to go around". But when your about to have some midevil torture device shoved into your hip bone and another team will be working very close to your jugular vein, well...you keep those smart ass comments to yourself.
Bone marrow doctors won so they did their thing first. My nurse Michelle was a god send, because withouth her I think I would have hopped off the table and taken one of the doctors out. I get the whole "big pinch...burn, burn, and then you should feel numb". Got that. What I didn't realize is that they were gonna have to do it several times and each time they were trying to actually get it down deeper into the bone.
Can someone say OUCH?!?!?!
And in case you ever wondered what Lidocaine feels like when it's injected into your ass or any other part of your body....ummmm, it's like having a mixture of hot lava and acid shot into you. Once they proclaimed me good and numb, which I totally begged to differ with, they got to work on getting out a sample of the marrow and the bone.
They decided to give me a quick run down of how the whole procedure should go from start to finish. They would mark the area where they were going to extract from, which of course was the area that they had just numbed. Then they would insert this tool, that I refused to look at or acknowledge for fear of passing out. they said there would be a pop when it went through the marrow and then another pop when it got to the bone. Finally it would be time to take a deep breath, exhale....and they pull out the sample.
Ta da...no big deal!
Yeah, right.
It sounded like a really big pencil sharpener was being used. Like the tool was the pencil and my hip was the sharpener. The pain wasn't pain as much as it was extrememe pressure and I could tell that they were working hard to get the sample. Finally, I felt the first of the two pops, then the second one and finally it was time to take a deep breath and exhale so they could remove their specimen.
I'm not gonna lie to you...it hurt like HELL, but at the end I really felt bad for the doctor because he sounded as though he had worked hard to get that sample. I just kept asking, "are you okay back there". I would hear a chuckle and so I assumed he lived. After a few minutes he exclaimed that I had really healthy bones and that is what was making it so difficult. That made me feel a bit better...at least there was something left on this damn body of mine that hadn't failed....yet.
Once that
If there had to be a winner out of the bone marrow and central line fiasco, it totally went to the bone marrow guys, cause at least they didn't shove my head under a sheet and suffocate me. NOT COOL, NOT COOL at all!!
There was no rest for me, once they had that line in it was time to tackle the next thing which was a treatment where they would cycle out my blood, cleaning out the bad Leukemia cells, and then reintroduce clean blood back into my system. It required a huge machine, with two nurses that were with me throughout the procedure taking my vitals. It took a little over 7 hrs to complete and as soon as it was over all I wanted to do was sleep. No such luck.
They unhooked all the lines for the treatment they had just finished and then brought in my first bags of chemotherapy. I wasn't even a full 24hrs into diagnosis and I was starting chemo. Thankfully Jon decided NOT to listen to me and came down to the hospital to see me along with Mar and Stacy. It all just seemed so surreal sitting in this hospital bed, my husband, two of my best friends and me with Leukemia.
Never in a million years how I thought I wold be spending my Tuesday....
Friday, May 14, 2010
Forget left field...this is in a whole other ball park
Monday, April 26, 2010
If I had to pick a point to start at when I thought, "hmmmm, maybe there is something really not okay here" was truthfully on the day that I, a 33yr old, married, mother of two children had to pick up the phone to call and ask her parents (yes you read that right MY PARENTS) if I should be, oh I don't know "overly" concerned by the fact that the left side of my stomach was rock hard and that I hadn't had a decent bowel movement in oh....hmmmm, I don't know....2 weeks?
And I define decent by me not requiring the maneuver of clenching my ass cheeks together as I make a mad dash for a toilet. I'm talking about one of those get up in the morning and greet the new day with a poo kind of bowel movements.
Jon and his flaunting colon and intestines can have as many as 2 or 3 of those before leaving the house to start his work day. GOD, SO UNFAIR THAT HE GETS THE GOOD COLON AND DIGESTIVE SYSTEM!!!
How my parents who have both worked in the medical field (my mom as a nurse and my dad in radiology) did not come through the phone and slap me silly is still beyond me? I did admit that I had gotten a little bit of motion with the laxatives and such but nothing that I would define as a nice #2 if ya know what I mean.
My mother listened as I listed off all the over the counter and home remedies I had utilized to try and get more than just a lot of toot in the chute but hadn't managed to get enough motion in the train. Moms are good like that. They will listen in detail as you describe the exact color and texture of the snot that is coming out of your nose from a cold you just can't seem to shake. It is NO different with your bowels. Once you have been carried in that woman's womb for close to 10 months baking she will always be able to stake that little claim on how your body is working....or in my case NOT working.
Feeling that she was ill equipped to deal with the magnitude of this situation and the fact that I had spent most of the conversation relaying every detail through sobs and sniffles of pain she then asked if I wanted to speak to my dad because she was even perplexed.
I love my dad...really I do. But really what grown woman wants to talk about her bowels with her father?
Anyone?
Anyone at all??
Yeah, I didn't think so. So I
Sounded like a brilliant plan. I tried to wait it out until morning because like one of the many millions of people in this great country of ours, I am uninsured. So any medical treatment of any kind was gonna be out of my bank account. We have no credit cards and currently sit in debt consolidation hell because those had been used on previous illnesses or just on "getting by living expenses". Oh stop making that face at me...yes that pair of khaki capri's and sandals were a necessity...geeze can't a person live a little??
Anyways, when I left my last place of employment I lost my medical coverage, when we attempted to pick it up through Jon's dealership we found that the monthly premium for our family of 4 to be covered would cost more than the mortgage payment on our home. We tried going to alternative routes and looking at private carriers but of course with my LONG ass list of medical conditions, it was always "sure we have a plan that will fit you and your budget but there will be a bazillion year waiting period for Sickly Sue over there"....what a crock of crap! So we basically played Russian Roulette with our families health needs. And we had been pretty fortunate. I really didn't think this time would be any different.
I had Jon drive me up to the local ER. He stayed long enough to do the initial paperwork with me because I was hurting so bad I could barely write let alone let it be legible. Within minutes they whisked me back to triage where I kissed Jon on the cheek and told him that I would call him when they released me in a few hours as a brand new woman who hopefully will have a cleaner intestine. He chuckled in his very tired way since it was just past 11p on a Monday.
Our house is in the same neighborhood as the hospital so I felt it was better he go home look after the kids and rest since he would be going to work in the morning. When the doctor's finished their magic on my "business" I would call him, he'd pick me up, I'd fall asleep in my comfy bed with a much lighter tummy and the world as we knew it would return to normal. I was so full of shit literally that I was believing this story.
I knew that something was up when I was brought back to a room in the ER and the doctor started doing my medical questionaire while a two nurses worked feverishly to get IV's in and blood drawn. Everything was coming rapid fire.
How long have you had the fever?
When did you notice the bruises?
What about all of the red spots on your neck and arms?
Where is the pain again?
Are you sure you're not pregnant?
As soon as I would answer one question another one would be flying at me. I was in so much pain and trying hard not to cry while I answered. I was more than a little unnerved that a doctor, an actual DOCTOR was doing all of this paperwork. It scared me and made me wish for a second that I hadn't let Jon leave me here.
But I'm a grown up so I just put on my big girl panties and listened as they told me that they were ordering a chest xray, CT scan of the abdomen and a shitload of labs, cultures and so forth. I just laid there in agony waiting for someone to get to the part where they offer up the pain medication.
The offer didn't come but it wasn't for lack of things going on. Matter of fact I felt like I was in one of those scenes from a television show where the person is standing still but everything around them is moving super fast. I was brought to xray and then back to my room. Then it was time to drink the contrast for the CT scan and although I felt like vomitting their little concoction of Crystal Light and whatever the hell it was I managed to choke down both cups in the alotted time frame before getting the first glimpse that while I believed I was there for a stomach problem, the doctors had found something else.
One of my nurses came in with a consent and said I needed to sign to have a platelet transfusion. I was confused. Who comes in to the ER constipated and ends up needing a platelet transfusion? Did I miss something here??
I mean I know that I am the Queen of bizarre illnesses but seriously...platelets? That sounded way serious and I was just having poop chute issues I was sure. Her face told me otherwise but when I tried to ask more questions she said I would need to talk to the doctor first and that he was on the phone with another hospital regarding me.
Great as if I wasn't hesitant to take the transfusion before, now I'm being "talked about" with another whole hospital. Oh lord. So I signed and she hung the bag of what looked to me like Tang in a clear whoopie cushion bag. She read through all the side effects that could possibly happen and then had to stay with me taking my temp every 5 min and monitoring my blood pressure. I really wanted the doctor to come in so that someone could explain to me what the hell was so serious that I had to be monitiored like this.
It took about 30 minutes for the transfusion because they ran it fast. She said they really needed to get my platelet count up before I was transferred.
Ok, hold up...wait a minute....who the hell is being transferred??
She did manage to tell me that it was me, but of course couldn't say why so all I could do was speculate that clearly this hospital was NOT equiped to deal with the amount of shit they must have seen built up inside me in the xray. Next thing I know I am being whisked off to CT which I have now assumed is to clarify the exact amount of shit that is impacted and how they are going to formulate a plan with this other hospital to get it out.
Seriously people, this is how my mind works when left to it's own devices...it's NOT a pretty picture.
I had just been wheeled into the hallway to make my way to CT when the doctor came over to let me know that as soon as I got out of CT he would be in to explain everything to me. He then patted me on the arm and walked away. I wanted to scream after him to tell me now that there was no way that I would be able to be fully compliant in the "take a deep breath...hold it...don't move...now breathe" sequence that takes place repeatedly through the damn test if he was gonna make me wait until afterwards to find out what the hell was going on.
The CT seemed to take FOREVER because I had that anticipation of what was coming next. I never in a million years could have guessed and if he had let me phone a friend and poll the audience I still would have been able to have been knocked over with a feather when he leaned over my bed took my hand and said "you've got Leukemia and we are transfering you to Tulane Medical".
I heard nothing in the room. Not my breathing. Not the monitors....nothing. I had come to the hospital thinking I needed to take a crap and now I was being diagnosed with cancer. There were no words for the longest time. I kept moving my mouth to formulated questions or sentences or even sounds of some kind but nothing would come out.
They asked if I had someone there at the hospital with me and I managed to shake my head no. They asked if there was someone they could call and I gave them Jon's number. It was now close to 3:30 am and just a few hours before my biggest worry had been how I was going to get to feeling better for my May 3rd return to work since I had been out with what I had been told was Mono.
I spoke to Jon on the phone and then my parents and it took everything in me not to just beg for them to get into their car right that second and begin driving to me. At a little around 4:45 am the ambulance arrived at Slidell Memorial to transport me to Tulane. The nurse gave me my room number and told me I would be on the Bone Marrow & Transplant floor. It all seemed very surreal. I just couldn't believe that less than 6 hours earlier I thought I had Mono and was constipated.
Life as I have known it is now changed and I'm about to get a crash course in cancer. Ready or not...
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