After no sleep and reoccurring pain, at 8:30 in the morning we arrived at the cancer center to see what they could do for me and get some explanation as to what happened. Anywhere a deadly disease like cancer is being treated and the treatments occur at frequent, regular intervals, there’s a bonding that occurs between all those present, and a familiarity. Needless to say all who were there were instantly surprised to see me since I wasn’t expected until Thursday. Unfortunately, there were no answers. There was great skepticism that my symptoms had been caused by 5-FU as evidenced by the fact I left with two controlled substances for my symptoms should they continue or intensify, neither of which happened. Pain is not a side effect of chemotherapy. THERE SHOULD BE NO PAIN! Plenty of other things - nausea, fatigue, diarrhea, sensitivity to cold - but not pain. Something is wrong.
I described as best as I could what had happened but heard nothing that explained the cause. No one is telling me what this is yet. For some reason being on the pump for at least eight hours was a good sign (it had been twelve). So my first treatment was over. The pump wasn’t reattached, the needle was removed, I had some blood drawn, set up an appointment with my oncologist next week to discuss since he wasn’t there, and that was it.
Just to go over it one more time. This was the worst pain I have ever experienced in my life. Let’s not forget that a mere 6 weeks ago I had major abdominal surgery. Does anyone think that wasn’t painful? Do you think I still remember what that felt like? OK then. I did not take the decision to remove my pump lightly. I am going through what will probably amount to half a year of hell and two additional surgeries because this therapy may be what saves my life. Why the fu*k would I remove it?! You know why? Because I thought I was going to die on the spot if I didn’t.
And speaking of six weeks, chemotherapy is supposed to start during a four to six week window after surgery. Tuesday was six weeks and one day after my surgery and my session wasn’t completed. And I can’t get my next session until my regularly scheduled second session two weeks after. So now, my first complete session won’t be until the eight week mark. But that’s if I can even complete it on the second try and right now I have no hope that I can.
I’ve alerted Sloan-Kettering who seemed to have more of an idea about what had happened to me but even they sounded a little miffed. Hopefully I’ll know more after we all talk about it but, by now, that’s at the earliest Monday and I feel an urgency that I don’t think is shared. I need this chemotherapy and I need it now and we need to fix this before my next scheduled session in less than two weeks. Can we move that quickly? Do I need more tests? To see a specialist? Be observed? All this can be arranged on a dime? We’ll see.
Of course I’ve been researching what this could possibly be on the internet which all the doctors have been telling me not to do since I was first diagnosed with cancer because I’ll drive myself crazy or something. BULLS*IT! Am I that simple-minded? Let me tell you something, the more information you have the better. The more you hear the terminology, get familiar with the symptoms, causes, variations, treatments, all of it, the better. Am I going to panic and refuse treatment just because I see case study where 5-FU infusion resulted in cardiac arrest and instant death? No. I hadn’t researched anything about unusual side-effects of 5-FU until after my adverse reaction but had I, it would have helped my understanding of what was happening and allowed me to make a more informed decision in the middle of the night when there was no time to call for help.
My suspicion is that I had some kind of vassospasm whether cardiac or abdominal and that continued treatment with 5-FU at the level and method being given cannot be continued if it can be given at all. The alternatives seem to be to reduce the dosage, change method of administration (pill), or use an alternate drug. This is all hypothesis at this point but that’s all I have right now. Thanks to Cary and Barbara for helping me to understand what may have happened.
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Dear Ray,
I agree with you on everything you have to say. It’s your body - you own it. Live in your day. Love it and reach out to others all you can because that is all there is for any of us.
MIke
Comment by Mike Powers — 2008.09.21 @ 6:33 am
Yikes, Ray, that wasn’t supposed to happen! Tough times. Internet research is a good thing. You have better skills than your care team does and at least as much motivation to find answers. They, of course, have more experience. Hopefully the combination will get you completely healthy again. Best to Christina and the kids.
Comment by Ruth — 2008.09.21 @ 12:53 pm
Ray,
So sorry you had to go through this extra pain. Well now we know what the FU in 5-FU stands for!
L
Comment by Lenae — 2008.09.22 @ 2:45 pm