Wednesday, May 27, 2009. Last day for chemo and as any one who has been through it knows, it can be a very emotional day...not the emotional relief that one would expect. But a day filled with anxiety, feelings of abandonment, the big question for me.....how long will it be before I am back here again!
Well let me tell you how my day started! I did not sleep at all the night before. I had a cup of coffee around 4am and it did not sit well with me. Being nauseated, I was tempted to take something, but all my anti- nausea drugs tend to make me a little woozy and I needed to be clear-headed for my doc appointment, because it was my last treatment, and I wanted to remember not only the questions that I needed to ask, I needed to be able to ask them in a clear headed way, and most importantly I needed to remember the answers to those questions! So you see my dilemma!
LATE! LATE! LATE! Trying to get onto Boston on rainy day is like being caught in quick sand. You know your sinking, but the more you struggle, the worse it gets. You learn to embrace the traffic and acknowledge that your day will only go down hill from here.
You arrive lat for your blood draw, which means, Docs will receive it late, which means pharmacy will be late and so and so on! Well let's just say that this was least of my problems today, but I did not know that yet!
When I finally arrive at the infusion floor and check in, there is a man sitting in the waiting who is obviously is obviously suffering some sort of flem problem. Now, you realize that in an infusion waiting room, you are packed in with not only very sick people, but their very anxious family members and friends. Sometimes it is very obvious who the patient is and sometimes it is not. This man started to cough and hack and wheeze, so I am assuming that he was patient, but I am still not sure. I could not see wrist band on him, but it may have been under the sleeve of his jacket. Afetr another coughing and hacking episode he got up walked over to the trash can sitting font of the water, juice and crackers table and start spitting, for lack of better term, what my students would refer to as, lungies (not sure about the spelling of the slang) into trash can! This cause me and my already upest stomach to run and I mean the 50 yard dash for the rest room, where I lost my morning coffee and my 5 decadron tablets that I just taken and that I need in my system before my chemo. When I came out of the bathroom feeling a little better, but still grossed out, this man actually got up and did it again! I couldn't take it! No one was doing anything about it! I decide to go sit it in the hallway and the moment that I sat down the water works started flowing.
By the time I got into see my nurse, Jane, for a blood draw if was in full swing of the heavy sobs! She explained to me, as already knew, that last chem day is very emotional. But I liked the way she put it. She said, "You are being pushed out from under the protective umbrella of treatment. You feel alone. But you're not!" She promised to speak to someone about Lung Man. And I was off to my doc appointment.
I didn't actually see my doctor today, I saw my new nurse practitioner, Jen, whom I had only met a few times before. She is lovely, very helpful and understanding. I always feel badly for someone who has to understand my complex medical past and deal with my sarcastic, prickly, but always trying to see the humor in things, personality. She handles me pretty well!
But of course, when she came into the exam room, I was already in tearful mode. I don't think she has seen me like this. Scared about not doing the whole 6 treatment protocol...only doing the 4. Even though I understand intellectually the "why" of it......you know, this funny thing about protecting your bone marrow, which means, we all know that it is not a question of will the cancer come back, but when! We talked about getting into clinical trials and that made me feel a little better about not doing the 6 treatments. Even if I did get the placebo, I felt better about participating in anything that would forward the treatment of ovarian cancer. But t hen she dropped the bomb. She said that before my doctor left and they discussed my case, that my doctor said that because my CA-125 level had fallen, that she was comfortable stopping at 3 treatments, which meant that I did not have to do today's treatment if I did not want to!
If I don't want to? Me? I don't want to make that decision, plus I no longer trust my CA-125 level seeing that it only went has high 15 when i tumor growing into my pancreas! Poor Jen was beside herself. I wanted the original treatment protocal that I agreed to and we looked at my history of CA-125 and she agreed that it would be be good idea to do the treatment today and she would get the ball rolling with regard to the clincal trial both PARP Inhibitor Trial and The Hedgehog Inhibitor Trial.
By the time I got back to the infusion waiting room, where I can never understand the Haitian women who call your name and get you set up for nurse, I was a weeping mess again. By the time my nurse got to me, I was in the fetal position crying. I told her about flem man again, she said that other patients had complained and that the ladies in the front behind the desk had been spoken to and then I told her about the option for no treatment today, and she very calmly told me that I should be happy that my doctor is concerned with my bone marrow, because if the cancer does come back, they want to be able to treat me, but considering the emotional preparedness that it takes to gear up for a treatment and if this was the protocol that was set up, then I should do it, especially if it made me feel better. She also agreed that CA 125 was not a reliable indicator. I knew that I would kick myself in the ass as the side effects of treatment started to affect me, but there is that stubborn prickly side of me that couldn't let it go. May be I am a sadist at heart.
My treatment was brightened by husband getting me an iced coffee now that I had enough zofran onboard my dear friend Lisa, who came to visit, listen to my miserable stories and alway is an assertive advocate for me no matter how crazy and prickly I get.
I said goodbye to my wonderful nurses and left without making my nest appointment, because there is no need to .....at this time!
Your day today makes me so mad - your blog should be required reading for all new onc docs and AK ought to know better.
ReplyDeleteI really cannot understand how they could leave the treatment decision "up to you" after you had spent the past cycle gearing up for this last one! Getting prepared mentally for a chemo cycle is just as hard (harder?) than the actual physical treatment! (Remember Janet, told she would do 6 cycles for Hodgkin's and then finding out late in the game that she'd have to do 2 more "consolidation" cycles? EVERYONE who had Hodgkin's in the old days got 8 cycles - and knowing that up front was critical.)
I think you were smart to do the last cycle, though - and your story illustrates (once again, as if we ever had any doubts about it) that medicine is an art, not a science, and that "practicing" medicine is accurate terminology. Maybe one day they will "practice" enough that they get it right!!
Feel better - and I'll chat with you soon off line! And I'm glad to hear about your possible participation in PARP and/or Hedgehog.