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.
I thought some of you might be interested in what I wrote about the impact on a doctor of being asked to treat non-aggressively. It is on my patient partnering blog.
Here is the post:
I have been thinking a lot in the last couple of days about what burdens we put on our physicians when we reject aggressive interventions.
Obviously, I am speaking very personally here, based on my deep reluctance to have a bone marrow transplant for my MDS bone marrow cancer. So this should not be projected directly into other situations, although maybe it is worth thinking about, and even discussing with medical team members.
It is almost easy for me to proudly declare that I am not going to give into medical system pressure, and am looking for quality over quantity of life. But when I started to put myself in the team’s shoes, it came out like this:
“I am asking you to not deploy the best technology you have to lengthen my life. That means that you will “fail” at what you have been trained to do, to fight all the way, or at least all the reasonable way. You will have to watch me die, and try to make that as bearable as possible, all the while knowing that maybe that could have been prevented. You already know, from your experience, how hard it is experience, and how hard it is to watch. Moreover, I am asking you to run the risk that later on — too late — you will change your mind. Or maybe you will just suspect that I have changed my mind, and you will wonder if you had presented information differently, maybe we would not be in this place.”
That is a lot to ask, particularly for those trained in the current governing ideology of medicine.
It does definitely not mean that as a patient, I should not do what I want to be nice to my doctor. But it does involve an obligation to be sensitive to the impact.
We need to remember that the duty to take care goes both ways in the patient-doctor relationship.
I seem to be remarkably stable right now. I still need my regular two units of red cells every two weeks.
The only area of current additional attention is that my ferritin count, which reflects buildup of iron in my body continues to rise. This can ultimately stress heart and liver/kidney. I take a drug to help me excrete the iron, and have now increased the dose. To put it in tweet style: “Not good for stomach. BAD.” But not actually not that bad.
I remain active on the same fronts, including patient partnering.
Thanks again to all in my support system, for which I am hugely grateful.
Exhausted, and I really do not know why. The numbers are not suggesting any deterioration, but who knows.
I am pulled in ever more directions. For example, I am now blogging on the Patient Voice in health care, here. I got the opportunity to speak to the National Policy Council of AARP last week on the Patient Voice. So, to be honest, I am blogging less on access to justice. The strategic planning process at our retirement community is wonderful, but also takes energy, as does the Resident Association Website.
I know I have to let go of things, but it does not seem to happen. I am also sorry to be whining when obviously I am deeply lucky to still have the opportunity to participate in so many ways. I would surely be even more out of it if I was doing nothing, but I wish that was not the choice.
Take care all, and thanks for facilitating my continued engagement. Feel free to be in touch. I can say no if I need to.
I promised to keep folks reasonably up to date with my medical situation here.
Bottom line, I am pretty stable, perhaps more tired, with no explanation from any change in the counts. We are keeping my red cell count above 9.0 most of the time, and that really helps, but when I crash, I really crash. (I have learned from a fellow resident in our retirement community that it is OK to be rude and just leave when I have to lie down.)
It may be that I am pushing myself somewhat harder. I am still very engaged not only with the nonlawyer projects, but also with the “patient voice” movement, and with the strategic planning process at our retirement community. I still blog on access to justice. I also blog occasionally on politics and humor.
I am particularly into trying to think about how the customer voice movements in health and law can support each other. I encourage everyone to join Patient and Family Caregiver Councils at your medical institution. Over 40% of US hospitals have them.
Thanks for your care and support. Love to all.
Well, it turns out that the chemo did not reduce my need for transfusions. So we are back to relying on transfusions, known as “best supportive care.”
Less trips to Hopkins, less nausea, and a slight sense of disappointment. Since I seem stable, the only issue is a bit of concern about possible long term iron build up, and we will be testing to see how that is going. The drug I take to minimize this is not too great on the stomach.
Not much else to report on the medical font, except that I am loosing weight, mainly because of little appetite. I will get tested to see if my digestion has slowed, meaning that I lose interest in food after eating only a little.
Thanks to all for your love and support. Other than “Little Adolph,” all well on other fronts.
So, I am through the next chemo cycle, and have one more in a couple of weeks. Then we will judge if it is helping.
So far there is no indication in the numbers that it is. However, I am feeling good.
This is not a big deal, since there are other possibilities. Indeed, as you will recall, a couple of years ago I was in a study of Revlamid (related to Thalidamide(!)), but only got an impact at the end of the initial period. I just heard that the study has shown that combining Revlamid with the red cell stimulant is helpful, so that is good news for me.
I am feeling very energetic, partly because of excitement at becoming involved in the patient centered care network.
You may note that I am considering in a separate blog the possible research opportunities in the fact that my next chemo happens at the same time as the Republican convention. (See my politics and humor blog here.)