Update one year later

It has been a whole year since I put up a blog post!  A lot has happened on the health front.

After about two months of relative stability following the last chemo regimen, my numbers again started to climb, and at the beginning of this year, 2017, quite dramatically.  At first I was looking for causes for this:  Was it too much stress?  Did I get too much toxic exposure?  What have I done wrong?  Am I eating the wrong things?  But this is just the nature of Multiple Myeloma, it sits quiet for a while then regroups and can come back with a vengeance in its own time.  This appears to be what happened.   Especially since none of the previous treatments I’ve done have gotten rid of it completely, there was always something left there ready to re-grow and take over again.  It's like living with a ticking time bomb in your bones.

Hence it was time for another round of major chemotherapy treatment.

So, medical details below, you can skip this part if not interested in the drugs, etc.

I have a new oncologist now, a myeloma specialist, Dr. Bensinger at Swedish Cancer Institute in Seattle, and he is overseeing my taking the immunotherapy drug Darzalex, which I’ve wanted to do ever since first hearing about it.  This is something that tells your own immune system to target a specific protein on the myeloma cells only, rather than using a drug to do the job.  It’s a five or six hour IV infusion once a week for eight weeks, then every two weeks for eight weeks, then once a month until six months is up.  It gets easier and shorter as time goes by.  The first one was a real bear with some very weird side effects, but they say that is to be expected for most people.

Dr B believes in the “three-drug-combo” as being much more effective than the Darzalex alone (85 or 90% chance of remission compared to only 33% if Darzalex is used alone), so I am also doing a rather strong thalidomide-derived chemo drug called Pomalyst with it, along with the dreaded Dexamethasone steroid once a week (kind of a booster for the other two). The side effects of this Dex are like a roller coaster and take a full four days to wear off, leaving only a short time each week to feel like a "normal" person before you start the process all over again.  Whoever invented it obviously never had to take it, and it seems to be a feature of all myeloma chemo regimens; the doctors love it because it makes things work better.

All this has me quite wiped out with very little energy and stamina, because the Pomalyst has dragged down my WBC and RBC counts to a dangerously low level.  This has required two blood transfusions and strict instructions not to go out into crowds or anywhere there’s too many people, lest I catch an infection.  So I’ve been in a kind of quarantine at home for a month or so now.  I’ve been pretty weak and shaky from the anemia, so don’t want to go out much and do things anyway.  Just one of those times to be got through knowing there are better things ahead.

But . . .  the good news is . . .

The “three drug combo” (sounds like a McDonald’s meal), and especially this immunotherapy Darzalex, is working extremely well for me.  Both the doctor and his assistant were thrilled when they saw the drop in my numbers and said I am having a fantastic result!  So this will all be worth it when it’s over and it pretty much looks like I could be headed for that promised land called REMISSION.

Some people are lucky, they do a short spell of chemo when first diagnosed, get into remission quickly and stay there for years and years.  (I know two such people.)  I have not been one of those lucky ones, my disease seems to keep returning with regularity (this will be the third major chemo round for me).  But if we can get these cells completely under control, something the other two plain drug regimens did not do, it will be a lot easier to keep it that way.  At least that is the plan.  These new immunotherapy drugs can work wonders.  They have made great strides in developing these for myeloma in the past few years, and even more and better ones are in the works.  I’m very grateful to have the opportunity to do this and the insurance to pay for it.

I have my ideas of what natural treatments I want to do to bring strength and wholeness back to my body after this intense drug induced “time out” from what used to be my life, and keep remission, but that’s another post!

Once again, a big “Thank You” to my sister for driving me every week to the Swedish Cancer Center for the infusions.  Couldn’t have done it without you!

Oh, and I’m enjoying reading a book by Toni Bernhard called How to Be Sick.  I know that’s a terrible title, but it’s a Buddhist-oriented take on how to deal with chronic illness and contains much wisdom and inspiration to learn acceptance and joy even in the most trying of circumstances.  I recommend her books.