I am so jealous of patients who are walking the hall without an escort. I am connected to a lung machine and to an IV, so every move I make needs to be coordinated and choreographed. Turn this way, step over the tube, turn the other way now and step over the other tube. Like some perverse game of jump rope, except I’m not doing any jumping.
I have an endless array every day of doctors and nurses and aides coming in and out of my room. Probably the worst is the three o’clock in the morning visit from someone who needs to know whether I have urinated. Why this question must come at 3:00 am when I am snuggled into a deep sleep and answer their question like a zombie, I have no idea. I just know that I am completely out of it at that time and hugely unhappy to be awakened for what seems like very silly timing for an even sillier question. After that they start coming in every hour or so around 4:00 or 4:30 to take blood, vitals, give me new IVs, pills and so on. I am on autopilot by that point.
Today I need to catch up on the afternoon that I lost yesterday after the unfortunate conversation with the doctor who introduced the topic of end-of-life decisions just before lunch. I still cannot bring myself to deal with that topic in the way she wanted to, so I think I will make a note to tell her that I think that when it comes to such serious discussions, some sort of prelude or sneak preview might be in order. I was ready to eat breakfast, and along comes Dr. Palliative Care-End-of-Life-Decisions and says I need to decide how I want to spend my time. The options she provides are enduring the agony of chemotherapy which will require endless trips to the doctor, possible infections and the dangers arising out of that and the side effects or opting to go without chemo (treatment) and go home and enjoy what time I have left free from the miseries of chemo. I was in complete shock because I did not at any point since learning of my progression believe that I am now at end-stage. Won’t I know in my heart that this is the final dance? I think I would. Instead, I am ready for those steel toe boots so I can dance-kick my way toward a little longer time on this earth.
Besides, I don’t want to have such a serious conversation with someone who is NOT my oncologist. Such a conversation needs to happen with her so we can discuss the reality of my remaining choices. As it stands, I thought, based on my oncologist’s discussion with me that I still do have some choices. I also know that she will level with me when it comes to the time that chemo might not do enough good to outweigh its negatives.
It is curious how vulnerable one is when feeling sick and scared. My fear had diminished when I had talked with my oncologist who shared the plan that we hope to engage after fighting down this infection. But all of that went down the tubes after Dr. PCEoLD ruined my lunch and, frankly, entire afternoon. I ended up a puddle of nerves and tears. I have rethought it all and realize that she meant well, but I think that serious discussions like that should not come up as casual hors d’oeuvres before dinner. Serious discussions about end of life should have a formal invitation with an agenda and the opportunity to bring a guest or two. It should not be a casual meet and greet. Next time it will go differently, I assure you, as I will write a set of instructions for whoever plans to conduct such a session.
In the meantime I had a PT session that went very well. I might have even made up for yesterday. I walked the circuit at a good pace, enough to breathe deeply without getting out of breath. Then, I took a break. After the break I told my PT rep that I wanted to dance a routine that combines a lot of different movements to see how far I could get through. I did that, and it was more than taxing. I made it through the first chorus before needing a break but then continued a bit more before having to sit down. After another break I walked the circuit again at a decent pace. I feel good now.
Also, my oncologist stopped by and we talked about the treatment agenda. Eribulin (Halaven®) on days one and eight of a 21-day cycle with Neupogen® for the intervening days. We will start day one here in the hospital after infectious diseases clears me. If the port needs to come out, they will give me a PICC line to use for the eribulin infusion, which will be a brief 30 minutes or so.
Thanks for all the good wishes. In the midst of hearing so much plain bad news, I read your notes over and over. Know that you make me smile and want to get out of bed or off this chair and dance.
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© 2004–12 Donna Peach. All rights reserved.