Living with MCL

Another person expressed some concern today, after my last post, that I may be starting treatment soon. Well, let me clear up any confusion. That isn’t the case.

It’s just I get into these moods every now and then, when I can’t help but question how much longer can I be so lucky? Especially when I look at Edie, and so many others in similar situations to me. Why have I been so fortunate to be so active, and not require any treatment for over 8 years, despite having a terminal illness?

It just boggles my mind, and I find it difficult to believe it can go on much longer, but ………….

Anyways, I had an appointment with my oncologist today to review my latest BMB and cytogenetic test results, and guess what? I have Mantle Cell Lymphoma.

Actually I knew that all along, but if you remember back in April, I posted how my new oncologist was convinced I had Splenic Marginal Zone Lymphoma. Well, he’s now convinced otherwise.

We also discussed my low hemoglobin/fatigue, and if it is the result of iron deficiency, or just a manifestation of my lymphoma. He’s convinced, based on the my ferritin levels in the blood, iron stores in the bone marrow, along with some other tests, that I am not iron deficient. [And I agree.] As further confirmation he also checked my haptoglobin levels which were actually higher than normal. It would have been low if I were iron deficient.

(We also discussed depression as a cause of fatigue, and suggested drugs, but I refused to go there!)

So I think it’s safe to assume I’m not iron deficient, but if I wanted, he suggested I continue taking an iron supplement (65 mg of elemental iron per day), for another two months, and see if my hemoglobin increases any, as even more confirmation of that fact.

I’m gonna have to think about that for a bit though.

It seems the longer we go, the worse things get.

The fiasco in the gulf is just one of many example.  We’re so busy politicizing this, and trying to place blame and fault (often where it doesn’t belong), little focus is being placed on the real issue, and that is an ecological disaster that will linger on [for uncountable years], creating unimaginable consequences from which the southeastern coast of the US may never recover, and place an undue burden on the rest of the country.

Then there are the customers [at work] who are becoming more stupid by the day, designing systems that are so complicated and convoluted, and change by the minute, they guarantee errors, and non compliance with requirements, forcing suppliers to change procedures that have worked for the past 30+ years [and still work for 99% of all other customers], all in the name of improving quality. But in the end all it really does is create delays in production, and increased costs, without any improvement in quality.

And on top of all this, Edie is going through 10 days of radiation (3 more to go), and my fatigue [or maybe it's just depression] seems to grow worse by the day, forcing me to face the reality, I may not be able to delay treatment much longer.

There just doesn’t seem to be any reason to get out of bed any more, except maybe for a bike ride, the only thing that seems to allow me to maintain my sanity in this insane world.

All I want to know is, when will all this insanity end?

Just got the results of my bone marrow biopsy, and while nothing seems to have changed MCL wise, the report did indicate “Stainable iron is present” in the marrow.

Despite the amount of stainable iron not being quantified, and my having started taking an iron supplement prior to the biopsy, there are other indicators (MCV having always been in the normal range for one, and no increase in my hemoglobin on my last blood test for another) which would lead even a layman, such as myself, to conclude I am not iron deficient.

So it’s back to the drawing board, and the realization that if I was stronger on the bike, as I originally thought, it was either because I was training more and with greater intensity, or the more likely scenario after considering today’s ride, it was all just the “placebo effect”, and I have not gotten any stronger at all.

Oh well, at least I can stop going through all the gyrations I concluded were necessary to insure I was absorbing the maximum amount of iron (I stopped taking the iron about a week ago), and I can put the colonoscopy on the back burner for now [which is also a great relief].

But to be sure there is still not some other underlying [maybe more sinister] reason for my low hemoglobin, other than my MCL, I have been told, by my resident expert, I should

check multiple stools for blood ……….. weekly for maybe 6 months or so

Now that sure sounds like a lot of fun.

I was reminded recently of a quote by Eric Hoffer

In times of change learners inherit the earth; while the learned find themselves beautifully equipped to deal with a world that no longer exists.

Well what I want to know is, what happened to that world, and why can’t I continue to live in it if I so desire?  I don’t particularly like the changes that are occurring.

Besides the fact the US is “going to hell in a hand basket” (which I won’t get into here), work isn’t nearly as enjoyable as it once was. Not that work was ever enjoyable, but since being purchased by PCC in October, things have changed in a way I’m not happy about. I can’t put a finger on anything in particular, but the feeling is there, much like how the dynamics of the bike club I belong to have changed as well over the past few years.

But worst of all, Edie’s myeloma has reared its ugly head again, and I’m beginning to wonder, what’s the point of anything any more?

I guess I should count myself lucky in some regards. I am in decent health, considering the health I’m in, still able to compete on the bike at a high level, and Edie’s being a real trooper, going about business mostly as normal, with very little complaining, if any. She’s certainly handling it a lot better than I would [than I am], and definitely better than a co-worker’s wife, who was diagnosed with ovarian cancer, a while ago, and now just lies around the house, taking her pills, and feeling sorry for herself.

Still it doesn’t change the feeling I have some most every morning to just bury my head in the pillow, yearning for the good old days, and say to hell with it all. Yet for some reason, I don’t. Every morning I manage to drag myself out of bed, put on a happy face, and go about my [mundane] life as if nothing is wrong, knowing full well that just isn’t the case.

The only thing I know for sure is, it’s getting more difficult with every passing day.

Oh well, time to get ready for todays bike ride.