A New Strategy and Maybe a New Normal

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.

 

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Two Insights

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.

 

 

Not the Best Week, But Who Knows Why

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.

A Bit Slower

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.

My Blog on Thinking What You Ask a Physician To Do When You Choose Non-Aggressive Treatment

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.

Update — All Basically Stable At Beginning of 2017

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.

Time for an Update — Tired and Busy

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.