My life as a Vampire

I guess I should start by saying that I am sorry it has been so long since I have posted anything personal here. I could list all the reasons why I have neglected this task, but it boils down to distraction and stress that have kept me from hashing out my thoughts into palpable form.  With my transplant only 10 days away it's time to sit down and work a few things out and get into the habit of posting...it's all downhill from here.

It's been a pretty harrowing past few weeks. I started my third and final ICE chemo on my birthday (02/26 thanks for all the birthday wishes!), which, while not an ideal birthday, was not one of the worst birthdays I've ever had. The nurses were great, with cake, presents and VP-16! It became a birthday with everything everyone always wants; cake, girls, and drugs, lots and lots of drugs! 23 is not a huge hallmark birthday anyway, although I can say that I will be very happy to see my 24! With my last ICE behind me I thought it would be a nice smooth run to transplant, with a whole month to live life before before I descended into the pit of high dose and transplant. Then again, I am never one to do things the easy way, so the past month has been anything but...

The problems started the Monday after chemo (day 7). I came in for counts and found that I was severely anemic and needed a blood transfusion. It's pretty rare to go through so much therapy without needing a transfusion although I was hoping that I would make it until after transplant before I would need blood. Even after all the horrible treatments I've endured a blood transfusion was something I really wanted to avoid. I know it sounds silly at this point, but transfusion seemed like one more step towards being sick, something I've never really seen myself as. Blood was something I couldn't avoid any longer, so I set off to Littleton hospital to get a transfusion, my blood band securely on my wrist and War and Peace under my arm to kill a few hours. In admissions I was told I couldn't enter the hospital with my wrist band- hospital policy. After going back and forth for 5 minutes with the admission lady and getting the head of admissions to come talk to me, I was finally convinced that the hospital had a band for me and I lose this one and still get my blood (no band = no blood) so I reluctantly let her cut my band off. I found my way to my infusion room after being told, again by admissions, to go the opposite side of the hospital. I checked in with the nurses and was left sitting for the next 45 minutes to wonder what was the hold up. The nurse finally returned to inform me my blood was ordered (Littleton doesn't have a blood bank) and that it would arrive in 2 to 4 hours! Being the patience guy that I am I told her that was fine and sat down to read. Four O'clock finally rolled around ( I checked in at noon)  and a new nurse came in and told me my blood was there and that she needed to see my arm band. I said okay and showed her the arm band that admissions had given me. She looked puzzled and asked me where my blood bank band was. To my dismay I found that I had been right to be suspicious of Admissions removing my band. In order to get my blood I needed that band and do to hospital policy I now would have to be re-typed and crossed, before I could get a transfusion, something that could take hours. I had already been sitting for hours and was ready just to go home and try again tomorrow, but I NEEDED blood. I was very pale, dizzy, and my heart was beating like a freight train. I told her to go head with the new type and cross; I would wait for the blood. Everything finally done around 7:30 and I got my blood over a 4 hour infusion, putting me out of the hospital well after mid-night hoping I would never need blood again.

Days 7 through 10 of my chemo is always the worse. My ANC  (immune system) drops to zero, I get a fever and spend the next few days in the hospital to be watched. I made it to the evening of the 9 day, going to bed so glad that I had made it! On day 10 my counts would start to recover and I would be fine, or so I thought. I woke up around mid-night running a very high fever (103) with chills, called the doctor and went to Littleton hospital to be admitted. By the morning I was feeling pretty good, evidently I had had a transfusion reaction that had proceed to "eat" up all the blood I had gotten the Monday before (this was Thursday now).  A few units of blood and I would be fine. The blood arrived around noon and I started the transfusion, and my troubles. In the first 20 minutes of the infusion my blood pressure dropped to 88 over 22 (I am a normal 115 over 65 kinda of guy). My Onc was called and he decided to send me down to the ICU so I could be watched more closely. Over the next three days I "drank" up 7 units of blood and 2 units of platelets and had a wonderful allergic reaction to one of the anti-biotics. I also managed to gain 16 pounds in water weight which left me looking like a water balloon. No infection were found, although all my doctors agree that I probably had one. I was finally released on Sunday afternoon just in time for a fun week of pre-Stem Cell Transplant test at Children's Hospital. CT on Tuesday with a liter of Gastroview (think about drinking chalk), PET on Wednesday, more Platelets and a broviac/bone marrow scrape on Thursday, PFT's on Friday. On top of that, the CT and PET came back inconclusive. There is a small uptake on the PET, not consistent with my disease but enough to keep me from being declared in remission, something I was really hoping for before transplant. Bone marrow was clean but my Pulmonary Function test sucked. I scored in the low 70's, making my lungs the biggest obstacle I'll have to overcome to regain my life as a musician/hiker/road biker.

It hasn't been all bad. I had a nice party on Saturday will over my friend, although it makes it seem very real to think I that won't see most of them until after July. The bassoon studio up at CU (my Alma mater) also held a benefit that was a great success.

It's coming and it can't be stopped...finally seems real