the cancer guy wrote:
I woke up early this morning to go for a walk, but, decided to head to the ER instead. My arm was killing me and I had been up all night. Turns out I spent 11 hours at the hospital getting two pints of O+ and the nephrologist I saw in October read me the riot act. He was talking about wanting to put me on dialysis and all this noise. I was so not in the mood to hear all that. Grrrr. Maybe I'll get to walk tomorrow.
What'd you do to get read the riot act???
CG, please check your mail. I had sent you a few and am still waiting for a response. Responding to just the latest, at least, would be great. I really hate to make any demands on your time. So, sorry! Don't take this as another riot act.
For others' eyes:
The kidney doc saw my numbers and wanted to get me on some sort of therapy because the levels he look at for his area of specialization are extremely (read dangerously) high. So, he saw my inaction as unresponsiveness to his knowledge. Little did he know it has been sitting at 3 since June of last year. For normal people I am in bad shape. For me, these stats am pretty much normal.
So, fast forward to today's doctor's visit. My oncologist told me he had been working with the fellow down at MDA we use. He came up with a plan to give me etoposide (VP-16) and ifex. My doctor laid out the risks and said I am not really a candidate for any trials with my counts being what they are. If this plan works 100%, which he said is unlikely, it would buy me some time and bring my back to my current level of well-being, but, I would probably be in a hospital for a month at a time for each round. He said it would take 2 rounds to know if it was really doing any good although we would have hints at the end of round 1.
Needless to say, hearing you can die now or die later is hard to take. The plan they outlined has never been tried because no one with my tumor type has ever had it progress straight to the marrow. In other words, there are no stats because I am the first. They determined the malignancy in my marrow is a variation of my original tumor type, but, different. When I used the two agents in the 10 rounds before my surgery is really messed me up. We added it on top of my standard agents at the suggestion of my surgeon. It did a number on me. Honestly, I am thinking about not pursuing therapy because if I do it could very easily kill me, and, the best they would expect is to get me back to where I am. The chances of it only buying me time with little to no side effects is maybe 5%. If it was a known, effective course of action, I might be thinking differently, but, I have to accept I am basically at the end of my options. In other words, I need to begin accepting and preparing to die.
This is a weird place. I never thought about what death would actually look like, much less, like this. Having to tell your boss, thank you for the opportunity, but, I must now leave work to go and never come back. Telling my kids I can't play with them because if I get an infection it could kill me. Essentially having to systematically and methodically close up shop and prepare to depart. Man, what a weird scenario! We have a little time to decide, yet, even if I do therapy and it does work, the same message stands as did before: this is incurable, and, now, is twice as deadly since it's in two bodily systems. Not sure if I'll ever walk or run again. My body just ache more and more these days. Walking is painful. Breathing is hard. And, the thought of running is frightening.
I appreciate all the support and help I have gotten from folk on the board. Thanks everyone for letting me share my story and encouraging me. I have had some low places and this is one of the few spots I have been able to be honest because I don't fear the effects it will have on my relationships if I bare my soul here as I might in face to face conversation. Even when I was no longer a runner this place took me and made me feel like I belonged and that's important and special. So, I will try to keep updating as time passes, but, at some point, there will be a last post and I won't be around any more. I don't know how far off that is, but, I suspect seeing new years would be a pretty surprising thing. Well, off to bed at 7:15 cause sleeping 10 hours today wasn't enough. Probably just depressed, but, fatigue and pain are heavy today. Talk to everyone soon.