I have promised to keep this up to date.
We have always known that the gap between the curves in which I live would narrow step by step. This seems to be one of those narrowing moments.
I am definitely now consuming red cells at twice the prior rate, that is now about 2 units a week.
My spleen is significantly enlarged, and it is likely that my spleen is chewing up red cells on its own. This makes transfusions less useful, which in turn means that we can not get my red cell count as high as I would like.
I have completed the first set of Revlimid. It made me somewhat befuddled, and I got the classic rash. Now in the 7 days off end of the first cycle. The rash is virtually gone.
However, we are exploring an alternative drug that should shrink my spleen. This might be more appropriate at this stage. I am also glad that I have a new good GI doctor.
So, how do I feel? Well, this is a different stage, and my job now is to find things to do that keep me engaged at the lower level of energy and capacity that is me now. I also have much less patience with meetings, I fear.
I am very into the process of fantasizing about and designing a possible stream to run between outside the dinning room and the lake in our retirement community. I still am somewhat engaged with patient voice roles.
I still very much enjoy contact with folks. Do not hesitate to reach out. Thanks for all your support.
I really am feeling more energetic, and even putting on a little weight.
Those of you who know me well may find it hard to decide what astonishes you more, that I getting physical therapy and exercise, or that I am willing to admit it.
In any event renewed thanks to all for your support.
So, I am now on fewer drugs, and feeling less nauseous, with my weight stable, but too low.
But I am also having to face the fact that I have much less energy, and having to cut out all travel, and even most meetings. An all day meeting yesterday was the last straw. I wanted to come home by 10:30 in the morning. (I will try to keep prior commitments.)
Blogging continues, but probably less, though in a more focused way.
It is very hard to say no to the opportunity to input, so I will still be available for informal advice/consultations.
Thanks so much for all your support. Friendships continue to be critical for me. Do not be shy! Reach out.
For a couple of years, the strategy has been to combine regular as needed red cell transfusions. That will not change.
However, a natural consequence of this strategy is build up of iron in the body. We have tried to counter that with chelation agents, first with oral drugs and then most recently for just a few weeks, through sub-cutaneous injections delivered overnight by pump.
Unfortunately, that has not been working to control the iron levels, but my creatinine has been going up.
Since something seems to be impacting appetite, nausea, energy, etc, (hence the “new normal”) we are seeing what happens if we stop the chelation, and let the iron take care of itself, hopefully recucing the creatinine. I have also stopped taking the ritalin, in case that was suppressing appetite.
I think I may be feeling a bit better, but it is likely to take some time to take full effect. There is no doubt that I am much ore passive, much more reactive rather than pro-active, and much more exhausted after activity.
My weight is down to 140 pounds, and my oncologist thinks that the largest impact on the quantity of my life is likely to getting that number up higher. My current life expectancy is roughly estimated to be less than three years. So be it. I am already way ahead of the original estimates.
The candor about my situation is NOT a request to leave me alone. Far from it.
P.S. On a more positive note, it was very nice how happy all my nurses were about the failure of the healthcare repeal effort.
I have been hugely enjoying, on YouTube, the British archeology series Time Team. This is sort of reality TV for the intelligentsia. They go to an old historic site, bring in all the experts they need, and within three days find what they can about the site and its history. Some sites go back as far as the stone age, others, more rarely, to WW II. It great to watch the experts, and their respect, skill, cooperation, and excitement — very different from the upper class distancing required of all of us in my teens.
I, finally, weeks into this experience, watching them finding and poring over Roman pottery and tiles, have realized that part of the meaning for me in my medical situation comes in the reassurance that life does go on, that things have meaning, that we build on our ancestors — and others will build on us after we are gone.
Perhaps related, after almost ten years of claiming that I am at peace with things, I have realized that I am clenching my teeth and my tongue to the point of pain. I must be angry and tense about something, and presumably it is my overall situation.
I am trying to remind myself that the most any of us can hope for at the end is that we did our best.
I promised to keep our friends up to date with how I am.
So, in order to keep that pledge, I tell you that I am feeling more under the weather, with particularly a worse lack of appetite. I do not know if it is a consequence of slow iron build up, or a reaction to a change in iron-reduction blood, or exhaustion, but for the first time I find myself cancelling my participation in meetings, and knowing that I need to protect my energy level more.
I am at Hopkins right now, getting the second of two units of blood, and feel quite a bit better already, so that is good news. We will just try working through things. my numbers are not showing any obvious decline, which is obviously encouraging.
So, this is not, repeat not, telling you not to be in touch. It is me telling you not to take it personally if I am slower in getting back, or more protective in making commitments.
It means so much that I can be honest with my network. You are all so much appreciated.
In the lat few months, I find that I have slowed own a bit — or maybe just realized that I have slowed down. A trip to the west coast, while wonderful, left me more tired than I had expected, and I find that I am more and more thinking that it is OK to let others take responsibility.
It may be that my body is slowly being impacted by disease progression, and/or iron build up. We have a strategy to get my weight up, (now at 150 pounds) and then increase the dose of the iron chelation drug (Exjade).
But this is not a crisis, and I want to emphasize that I do NOT want to discourage people from reaching out to me for any reason. I just may be a bit more self-protective.
Thanks as always for your support.