Sunday, May 15, 2011

It's funny how 2 1/2 months feels like a lifetime ago...

If I had to describe what has gone on since my last post at the end of February with only one word I'd have to go with....UNBELIEVABLE.

After 5 1/2 months of remission I received a phone call around March 17th from my oncologist advising me that my last set of labs drawn the first week of March were "questionable" and I needed to come in and see her on March 21st instead of waiting until my April 16th appointment.  I was feeling okay at the time of the phone call.  A little fatigue but nothing to be alarmed about.  I'd had a cold for a few weeks but nothing crazy.  I wasn't bruising easily, there were no petechia on my skin, I wasn't running any fevers and outside of dealing with the unrelenting pain of my spleen and the daily issues with nausea and vomiting I was managing to have a somewhat normal life again.  I wasn't panicked.  It was just another doctors appointment.  Another check-up to get through.  No big deal.



I made my way through the week looking forward to attend a friend of ours 2yr old birthday party and the crawfish they would be boiling.  It would be my first crawfish boil in over a year so I was super excited for it.  The day of the party arrived, March 19th, and although I was a little more fatigued than usual I wanted to attend.  We made our way out to their home and settled into the idle light chit chat that encompasses any children's birthday.  There were talks about the 2nd baby on the way and how the birthday boy was adjusting to the idea of another baby joining the family.  I got to visit with people I haven't been able to see in some time and the day was easy, sunny for this time of year and life felt light.  Right after eating I could feel that I was a little more tired than usual and so I asked if I could lay down in our friends room.  Within minutes of my head hitting the pillow I was sound asleep.  Jon let me rest for a little over an hour before coming in to check on me.

This little ritual of having to nap while out at someones house was not unusual so there was no need for concern or cause of alarm in either myself or Jon's mind.  I came back out and rejoined the festivities and a few hours later after everyone had their fill of crawfish, cake, goodies, presents and the general joyfulness of a child's party we headed home.  On the drive I noted that I was still tired and in need of some pain med for the pain in my upper left abdominal area, but other than that there wasn't any issues.

I went to bed a bit early that night and when I woke up Sunday morning it felt as though I'd been in a fight in which I wasn't aware of participating in.  I literally took time to check my body over for any bruising and as Jon passed me I asked jokingly if we had started a Fight Club while I was sleeping.  He laughed and said, "the first rule of Fight Club is that you don't talk about Fight Club".  I chuckled back and turned on my heating pad, took a pain pill and climbed back in bed to rest and take it easy. 

We had rented some movies that needed to be watched and returned later that night.  Jon came in to ask if I wanted to come lay on the couch and watch "The Next 3 Days" with him.  I said yes and gathered up my pillows, a blanket and grabbed a jacket and knit cap because I felt unbelievably cold then made my way out to the living room.  I made it 1/3 of the way into the movie when I felt like I needed to take my temperature.  I just had this feeling like I was running a really high fever.  I went and found the thermometer and as I heard it beep to advise that it was ready to be read I got this sick feeling in my stomach.  I read the temp and almost shook the digital instrument in attempts to make it NOT say 102.4 degrees. 

I didn't want to believe that I had spiked a temp so high and so quick that I placed the thermometer back in its case, pulled off my cap and threw back the blankets feeling that the combination of the two were the culprits for this temperature.  After another 20 minutes of uncontrollable teeth chattering and feeling like I was shaking so bad from being cold that my muscle and bones ached I took my temp again.  I stupidly thought it would be better but I was mistaken when it beeped and I read that my temp was now a lovely 102.7 degrees.

Well shit!  There goes my peaceful Sunday.  I told Jon to pause the movie and as I called my oncologist I told him the temp that the thermometer read.  I could see the look in his eyes go from "relaxed Sunday" mode to the "my wife's still battling cancer" mode.  I hate that look.  But it was what it was and so I awaited a call back from Dr. Zhuo.  We watched the movie to pass the time and thank God for the distraction because it took her almost 45 minutes to call me back.  When she did she wasted no time to tell me that she didn't want me waiting to come for my appointment which was set for 8am the next morning.  She advised me to go to the ER immediately.  She felt that I was probably in need of a transfusion since she had seen those "questionable labs" but for just a moment I thought about asking her exactly what the labs showed because I had this feeling in the pit of my stomach that something much more serious was happening that would require a bit more than just a transfusion.

To be honest I thought that it was my spleen.  When we made our way to the ER and they were moving so quick to get me from triage, to a curtained off gurney and finally to an isolation room in the span of about 45 minutes I knew deep down that I wouldn't be going home.  I knew that I was going to have to be admitted.  No one said that to me until a few hours later but I noticed that as the minutes turned to hours the ER nurses and doctors weren't looking at me the same.  It could have just been me being tired and slightly paranoid but I swear it was like they were keeping something from me.  As if they were waiting for my oncologist to come and have a "talk" with me about my labs. 

Once I was admitted they moved me to an isolation room on the 7th floor which is the new floor for the oncology patients.  Even being in remission I have to go on this floor, especially since they advised me that I was neutropenic.  My level of worry was still somewhat low because I'd had bouts of neutropenia once I'd gone into remission.  It basically meant that I needed to get transfusion of blood and platelets and I'd be good to go.  The thing that started to ratchet up my worry factor was the fact that A) my oncologist, Dr. Zhuo had not yet been in to see me although I'd been visited by the oncologist that was on rotation at LSU and B) none of the doctors or nurses would say when I'd be discharged.

I finally received a visit on day #3 from Dr. Zhuo who came to "break the news" that I had relapsed.  The leukemia that I thought was retreating had come back in full force.  I was once again alone in a room with a doctor as they delivered devastating news.  She quickly ran through why this may have happened but I've got to be honest the only thing I wanted to hear was what the game plan was.  What do we do right now?  When can I start chemo?

She was full of talk but none of it seemed like solutions or a plan of attack.  She left my room and I began the litany of phone calls.  First to Jon, his mom and my parents.  It was a mixture of disbelief and a strong sense of "lets lace up our cancer ass kicking boots and get back into battle mode". 

I wish I'd have had my computer with me during the entire 33 days that I was in LSU getting chemo, fighting the red tape and ridiculous bureaucracy of trying to qualify for Medicaid, enduring bone marrow biopsies, finding out that I need a bone marrow transplant in order to beat this and save my life, then finding out that I'm in a hospital that doesn't provide this treatment and finally having everything come together in the most amazing and unexpected way to get me to where I am now.

I've got a lot of catching up to do with you all.  Over the next few days and weeks I hope to get you guys up to speed with all the bitter, crazy, funny and purely ridiculous stuff that's been going on in my absence of writing.  From realizing I'm going to be leaving my little LSU nursing family to go back to Tulane for the remainder of my treatment, the surprise of my sisters arrival to spend a week with me, being stuck by a nurse at Tulane and my sister passing out stone cold in a moment we call "playing possum", the amazing kindness of complete strangers that exceeded my families dreams in a fundraiser planned by a very dear friend, another complete surprise of my dad coming back in to surprise my mom for their 24yr anniversary, welcoming my mom back to live with us indefinitely and the musical sleeping status of our 11yr old daughter....there are so many stories to tell and I look forward to sharing it all with you.

So keep checking back and tuning in to "Life in the Land of L" because the funny never stops even when everything in my world seems to be crashing down around me.  And I am so damn grateful for that.

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