I promised an update this weekend, after my meeting with Dr. Connelly, which I had today. She and Dr. Meehan had some bad news for me. Bad enough, that I am a little reluctant to share, but the upshot is that they seem to have decided that my lymphoma is not curable, and that it is time to switch managed care. That, however, is not the bad news. The bad news is that my prognosis was given to me as months.
I was feeling fairly upbeat, in that my last day of radiation was this morning, and the lymph nodes seemed to have responded to it very well. Additionally, my spleen has continued to shrink. I am not particularly fatigued, or in pain. However, the problem appears to be the speed at which my lymphoma returned since my transplant, and the speed at which the lymph nodes swelled. Which, admittedly, was damn fast.
I feel relatively good, the best I have felt in a couple weeks (radiation is fatiguing). Of course, I will be looking into options. I have a lot of respect for Dr. Meehan, but I think that I need to get some other opinions on the possibilities of trying other treatments that might have a chance of curing me. Or, almost as good, extending my prognosis into the "few years" category, as there are some very promising treatments that are being developed right now, one of which is likely to be released next summer. It seems especially sucky to die of something that could be curable next year. On the other hand, unless I can find a doctor that believes that it is worth while to try for a cure, only the timing of the prognosis is in doubt. It is also true that not everything in curable, however stubborn I might be.
Do I carry on as if I did not have knowledge of this prognosis? No-one knows how long they are going to be around, so in some ways this is moot. When the doctors talk of timelines, it is based roughly on how other people have done in similar situations, and everyone is different. It is probability; it is not the same as my odds. Still... not good.
I am feeling a little bit at loose ends. There are a couple of very exciting projects that I have been working on, which I would like to finish, but the current timeline does not look like it is going to allow for that. Clearly, I ought to re-prioritize in case my illness follows the current prognosis, but I don't see that assuming that my demise is imminent is something focus on. To think that I am not likely to make it to next year is a listless sort of thought - it makes it hard to care about ... well, much of anything concerning the future, which when you think about it, is mostly what one works toward. Enjoying the present is great, but really, it is in the context of there being a tomorrow and day after - the building of memories, as much as the actual experience.
Well, as I said, I just got the news today, and I am not sure exactly what it all means. My doctors do not currently have a plan laid out, but are thinking about it over the weekend and will try to determine what they think is best in the long run. Any plan, though depends on my getting off my immune suppressants and steroids, so I am now on a very quick taper. The danger there is donor vs host disease, which can often also be fatal. I am eating well, exercising, resting and I need to try to stay optimistic as those are the few areas that I have any control over. I am certainly up for some dark humor if anyone has good recommendations for books or movies.
Fucking cancer.
I was feeling fairly upbeat, in that my last day of radiation was this morning, and the lymph nodes seemed to have responded to it very well. Additionally, my spleen has continued to shrink. I am not particularly fatigued, or in pain. However, the problem appears to be the speed at which my lymphoma returned since my transplant, and the speed at which the lymph nodes swelled. Which, admittedly, was damn fast.
I feel relatively good, the best I have felt in a couple weeks (radiation is fatiguing). Of course, I will be looking into options. I have a lot of respect for Dr. Meehan, but I think that I need to get some other opinions on the possibilities of trying other treatments that might have a chance of curing me. Or, almost as good, extending my prognosis into the "few years" category, as there are some very promising treatments that are being developed right now, one of which is likely to be released next summer. It seems especially sucky to die of something that could be curable next year. On the other hand, unless I can find a doctor that believes that it is worth while to try for a cure, only the timing of the prognosis is in doubt. It is also true that not everything in curable, however stubborn I might be.
Do I carry on as if I did not have knowledge of this prognosis? No-one knows how long they are going to be around, so in some ways this is moot. When the doctors talk of timelines, it is based roughly on how other people have done in similar situations, and everyone is different. It is probability; it is not the same as my odds. Still... not good.
I am feeling a little bit at loose ends. There are a couple of very exciting projects that I have been working on, which I would like to finish, but the current timeline does not look like it is going to allow for that. Clearly, I ought to re-prioritize in case my illness follows the current prognosis, but I don't see that assuming that my demise is imminent is something focus on. To think that I am not likely to make it to next year is a listless sort of thought - it makes it hard to care about ... well, much of anything concerning the future, which when you think about it, is mostly what one works toward. Enjoying the present is great, but really, it is in the context of there being a tomorrow and day after - the building of memories, as much as the actual experience.
Well, as I said, I just got the news today, and I am not sure exactly what it all means. My doctors do not currently have a plan laid out, but are thinking about it over the weekend and will try to determine what they think is best in the long run. Any plan, though depends on my getting off my immune suppressants and steroids, so I am now on a very quick taper. The danger there is donor vs host disease, which can often also be fatal. I am eating well, exercising, resting and I need to try to stay optimistic as those are the few areas that I have any control over. I am certainly up for some dark humor if anyone has good recommendations for books or movies.
Fucking cancer.
Personally,I'm in favor of and a beleifer in Leifist Exceptionalism. You have proven it to me time and time and time again.
ReplyDeleteWhat seems important (from this vantage anyway, which is pretty different from that vantage) is that you live EVERY day as if it were your last, whether that's days, months or years away. Obviously that has some practical ramifications that differ depending on timing, but I think the essence is true.
I'm typing on my phone, which is neither a pain in the ass, nor a pain in the neck, but nor is it very efficient, so I'll send some movie recommendations soon from my real computer.
So very much love,
Mike
I like that.... Leifist Exceptionalism. There is always an "outlier" on statistics and I've been calling him the "Outlier". Bacterial infection got a cure basically overnight so one never knows. There is an element of having to be realistic but you just never know. Lots of love to you both, -Karen
ReplyDeleteAh, Leif.There are no adequate words, other than those you already put down. I don't know if there is any advice out there on how to live while under what seems a certain death sentence; it seems it should be a highly individual path. I don't imagine it's easy to try to pull your thoughts away from the bad news. I agree with looking into other places...somebody's got to be doing some research/trials on this sucker. And I like the other 2 comments...no reason you can't be the outlier here, or I should say continue to be. Wishing you & Becky as much peace as you can take in, Paula
ReplyDeleteHell, hell, hell.
ReplyDeleteI hope you're able to get access to the experimental treatments being developed.
Fucking cancer, indeed.
Damn damn damn, and I know this may not be the most useful response. I agree with others here, you are an outlier and this still gives me hope. Also, it is soooo challenging to live each day as fully as one would if one knew it was to be your last, but I think you are already doing a lot toward this - what I think it means is to remember the important things like telling the people you love that you love them, basically it comes down to love and care for yourself, for others, and for the world around you. You will continue to inspire me! lots of love to you both, larkspur
ReplyDeleteI am a long way from giving up hope. I am stubbor and there are some promising new drugs coming out all the time. In terms of priority though, it is important to plan for the worst-case scenario. I don't have to worry about the best case scenario. If I get a spontaneous remission, or a treatment that completely cures me, I don't think that I will be wondering what to do with all the extra time. :)
ReplyDelete