Personal Updates

It is always easier for me to write these updates when I feel on a bit of an upswing.  After a tough time, now over a cold, and with two units of blood yesterday, I am feeling better.

The real problem is that I just do not want to eat (my weight is about 134 lb without clothes).  My stomach says eat, but my mouth refuses (see Cookie Monster on McNeil Lehrer, explaining in the Cookie Gate scandal that he always obeys orders from his stomach.)

Anyway, Joan and friends are scurrying around to get food and supplements recommended for me yesterday by my nutritionist.  In addition, as of this morning I am on a new drug that hopefully will boost my red cell production and/or shrink my significantly enlarged spleen — both of which will considerably reducing stress on my system.

I have to make clear that if none of this works in the next couple of months, I will be seriously considering steps that would put me in hospice.  The times of joy have been far too short, and the times of the opposite far too long. As always, the main problem is absolute exhaustion.  Once I stop blood, I should slip quietly away in a few weeks.

Family, friends and medical staff have been amazingly supportive of my process and my ultimate decision.  The mechanics are actually quite simple.  Once I stop blood transfusions, I immediately become hospice eligible — because I will have less than 6 months to live.  I might, at some point go into an appropriate room in the health center of our long term care facility, or I might stay in our home.  Many of you have heard me say that often when people say, “I want to die at home”, what they are really saying is that they want to stay in control, and they think, often rightly, that home is the only way to do that.  I am lucky to have absolute confidence that I and the family will stay in control to the end.

Thanks again to all who have been and continue to be, an incredible support.

 

 

 

 

Advertisements

Gaining Weight

The current strategy seems o be working.  I am actually gaining a little weight, and everyone says I look better.

Iam keeping at the lower red cell level, and chewing through less red cells than before.

I am back to being sleepy, and doing less, but I am happier, so staying with the change in strategy, but will try going back to Ritalin to wake me up.

I am particularly thankful to my oncologist who found the right and trusting way to tell me that I seemed to be feeling worse than my numbers suggested should be the case.  We then explored issues such as depression, diet, GI, and I took various small steps.  Anyway, well worth it.  What it means to have a provider who can be direct and honest, without blaming!

Thanks again to all for your support.

 

Update: A Bit Better and Stable

I have to admit that it is harder to write an update when things are not going to so well.  But I still promise that real bad news will be shared promptly, so silence, while not golden, is not really bad news.

So now, after a number of chemical attempts to reduce iron build up from transfusions, and to improve red cell production, I am now off those drugs, and feeling much better.

In fact, we are testing, with some apparent success, whether keeping me at a lower level of red cells will reduce my rate of red cell consumption.  It is pretty clear that my spleen is chewing up red cells, and that this may be proportional in some way to red cell level.  In addition is the quirky fact that the spleen can act as a supplemental producer of red cells.

So we are to transfuse me on a schedule that will keep me above 7.5 at all times.  This is the approximate level at which I experience angina. Last week, I was down only one  unit, or so, after having in the earlier phase consumed two units a week. So I go up to Hopkins once a week, and get one or two units.  Well worth the effort!

As to mood, while I am less energetic at this red cell level, I am more peaceful.  I think this is because when I have more red cells I feel more obligation to be productive — which I am now much more limited at.  My mood is also better because I am eating more.  I have gotten good advice from a GI doctor, and a drinking nutritional supplements, but most importantly, our community is opening a second dining facility that we like a lot.  They do a superb cooked-to-order pizza, for example.  (Menu here!)

Anyway, the absence of my blogs has caused people to worry and reach out to us — and that is a good thing.  I means a lot to stay in contact.  Keep doing so.

p.s., if you want to encourage me to blog more, then get people to subscribe to my blogs – listed here, at bottom.

Very best to all.

 

 

 

Update Time. Not So Great.

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.

Feeling Better

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.

Updates — Really Slowing Down

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.

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.