week 7 activity
Last Weds I was in the ER for some serious gut pain, Tom said I was completely grey. All I know is that I was one sick puppy and I probably waited one day too long. Its just you're so sick anyway, you wonder if its a side effect or 'normal' for the amount of poisons hanging around in your body. I took my list of 'meds that might have toxic outcomes' and explained multiple times about the trial I was in along with current symptoms. The poor ER doc looked a bit intimidated which I appreciated but did not find particularly comforting. They did an ECG and I kept saying its not my heart, its my guts! This happened twice. After seeing a few more docs, having labs and a CT we were told they were calling in a surgeon. It would appear that I had a perforated colon. Tom and I were both very upset since I didn't think that with a WBC of less than 1500 that opening me up was a very good idea. I could see all sorts of infection problems being hurled my way.
Fortunately, the surgeon was equally concerned and not completely convinced that was an accurate diagnosis. He gave us the option of treating it conservatively with fluids, no food and antibiotics and watching me closely or going in and have a look see. We agreed on the conservative approach. I was put in an isolation area and actually had very minimal contact with anyone.
After day 2 I had an anaphylactic reaction to the antibios - My extremities turned strawberry red and I experienced an itching that I cannot describe. It was like a zillion little bee stings - it was a good thing that there were no sharp instruments around because I would not have thought twice about jabbing a fork into my legs. I didn't have a compromised airway, just very irritated. This lasted until yesterday morning and copious amounts of benadryl. I'm not allergic to anything that I know of - makes you wonder if theres just so much crap in your system the body can't handle anything else. But for now, I am supposed to shout from the rooftops of an allergy to penecillins.
I will say that I was impressed with the teamwork approach to my dilemma. My family doc, the surgeon, my treatment coordinator and Dr Everson were in regular contact. It is a bit disconcerting when you are that ill and people look at you with an "I have no idea what to do" expression. BUT, at least they didn't forge ahead aggressively without considering the potential disasterous outcomes. They were all very kind and equally concerned and I felt comfortable with the care.
On Friday the agreed diagnosis was Neutropenic Enterocolitis, or Typhlitis:
"It is an acute life-threatening condition characterized by transmural inflammation of the small and large bowel in patients who are severely myelosuppressed and immunosuppressed.
The clinical presentation can be dramatic, and the outcome may be devastating. Mortality rates are high, and treatment is controversial, with options varying from conservative medical management to surgical intervention. Early recognition of the condition is paramount to a potentially good outcome.
Over the past 3 decades, this condition has increasingly been reported in adults with a variety of myeloproliferative disorders and solid malignant tumors and in adults who have had solid organ and bone marrow transplantation. Some cases in adults are due to the increasing use of myelotoxic chemotherapeutic regim."
So obviously my trial drugs were all on hold and after day 3 Dr E pulled the plug on my participation in the trial. I can't say that I am disappointed. This treatment has been brutal. You get to a point where it doesn't make sense when the treatment is worse than the disease. And with this being my 3rd time on peg/riba, just how much can a body tolerate?
I feel more clear-headed but I get winded walking to the kitchen for water. I worry that after being knocked down so hard, how well will the body recover? I'm taking it real slow and still dont have much of an appetite - but when I do eat something, I try to make it count. I had some soft scrambled eggs yesterday.
When my family doc discharged me, I told her "if I EVER come to you saying I'm considering another clinical trial, I hereby give you the authority to smack me upside my head".
This last year life, meaning 2008, was pretty good for me. I managed to stay out of the hospital, a few visits to the doc for various immno-deficiencies but otherwise okay. I can handle being slower and just listening to my body. *I* know when something isn't quite right. I could go for a long time like that. But each time I put myself through this, I can't help but wonder if it's doing more harm than good. SO, I'm done. Fini. No more. Trial programs, go find yourselves another lab rat. This one has left the building.
Oh, and i got an email from my coordinator asking if I was coming to Denver today. If not today, would Weds be possible? Um, you'e got to be kidding. I will happily pack up my kit of crap and drop it in the mail to you. If there are some sort of forms I need to fill out, mail 'em out. UC will be lucky if they EVER see me again. (I say that for emphasis, we all know that isn't true.)
So here it is March 16th and I can look forward to spring. I don't have to get up and take meds every 8 hours. No more shots, no more med journals. I'm hoping I'll be more like me in 30 days, just in time to bust out the harley for it's 2009 innaugural scoot.
After week 2, life became a blur. It wasn't a life, it was mere survival.
I have never felt as alone as I have during this process. Nobody's fault, you just feel like one of those action shots where you are sitting still and all life is buzzing around you. I missed my family, my grandchildren, my simple routine. Its like you check out of living for a while, but you're still above ground. I sign off with this thought - what keeps us going? In the face of adversity, illness and trials why do we keep going? I can't answer that, I just know that it happens.