Dave | CaringBridge

Dave’s Story
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Journal entry by Dave Clark

Harking back to the very beginning of this journey -- when I first got the completely unexpected diagnosis of Multiple Myeloma -- my Hematologist/Oncologist laid out my situation, and his recommended treatment plan, like this ...

"Your bone marrow is being taken over by cancerous Myeloma cells, which are crowding out the normal healthy plasma cells, and that is why you are so severely anemic -- your hemoglobin level is so low that even the mildest level of exertion leaves you breathless.  While the underlying disease is a chronic condition, we can improve your situation by attempting to rid your bone marrow of active myeloma cells, so that the level of healthy plasma cells can get back to where it ought to be.

So we're going to start with a regimen of four 4-week cycles of Chemotherapy, with the goal of putting your currently-active disease into remission.   As we undertake that Chemotherapy, we'll see ...

1.       IF you are able to tolerate the various side-effects of that Chemotherapy, and

2.       IF that Chemotherapy produces a Response (ie reduction in Myeloma cells), and

3.       IF that Response is adequate ...

THEN we would have achieved at least partial remission, and so would then go on to perform an autologous stem cell transplant procedure, to fully "cleanse" your bone marrow, and secure that remission condition." 

Now here we are many weeks later.  As those weeks unfolded, we found that ...

 

we found that ...

1.       Yes I was able to tolerate the Chemotherapy, quite well in fact, and

2.       while we didn't see anything at all in the way of a "response" through the first two cycles, at that halfway point, a second bone marrow biopsy done at that time showed that the ratio of myeloma cells to healthy plasma cells in my bone marrow had indeed improved, and my hemoglobin levels began to rise.

3. Now that the full course of four cycles is done, a third bone marrow biopsy done last week shows that there are now NO active myeloma cells left in my bone marrow.  That's about as "Adequate" a response as we could have hoped for.

As a result, my current hemoglobin level is today higher than it's been in over three years, and some exercise tests I underwent last week did not result in any breathlessness at all -- and words cannot express how absolutely delightful that felt to me, to really push myself and find myself still able to talk and not be out of breath.  When last year I found just walking a slightly uphill fairway on a golf course had me having to stop several times to catch my breath. 

But I have been cautioned that this improvement is NOT a permanent state.  The underlying disease is merely in remission, and will remain lurking somewhere inside my systems, to possibly eventually return and begin producing cancerous myeloma cells in my bone marrow once again.

So the next recommended step will be that autologous stem cell transplant procedure, mentioned at the beginning of this chapter.   So let me talk about tissue transplantation for a moment.

Any "Transplant" procedure entails replacing some impaired tissue in a person's body, with healthy tissue -- typically obtained from some donor.   Now regardless of how closely the DNA of that donor tissue matches, it is still "foreign" tissue, and so inevitably the body attempts to kill that foreign tissue, and so such transplantation always involves processes to defeat those attempts by the body to reject that foreign tissue.  Which is a major problem in most transplantation. 

But unlike other bodily tissues, Stem Cells are interesting creatures.  They are fundamental building blocks, which can morph into just about anything, depending on where they come to rest in the body.  And where does one get Stem Cells?   Well the word "Autologous" means that the stem cells to be transplanted are actually obtained from the patient himself.  Consequently, they are the patient's own tissue, and hence do NOT pose any rejection risk.  This is a relatively new concept, not very widely utilized, but which has been proven to be quite effective in dealing with certain types of diseases and damaged tissues -- including Multiple Myeloma.

So they're going to "Harvest" a bunch of stem cells from me, and then eventually re-introduce those back into me, in an appropriate fashion, such that those re-introduced stem cells will develop into healthy bone marrow plasma cells.  So once the dust settles, there won't be any rejection issues to deal with.  Neat idea, yes?

Sounds simple.  But the devil is always in the details, and the mechanics involve some rather arduous processes.  And so before subjecting an individual to such processes, the transplant specialists want to be sure that the candidate is in a suitable state of health to undertake such steps.

So In this past two weeks, I've gone through a more complete battery of tests than I've ever encountered in my entire life.  Rafts of blood and urine tests, and I've been X-rayed and ultra-sounded and EKG'd and PET scanned, from head to toe.

Today I met with the transplant specialists to go over all this, and the good news is they find me a suitable candidate for transplantation, and so we went over the details of the schedule and of the specific things that we're going to do.

The first step is obtaining stem cells from me.   Normally the desired stem cells are only present within the bone marrow, which is awfully hard to get to.  But they have found that certain drugs can boost the production of stem cells, to many times the normal levels.  And then other drugs can "Mobilize" that bumper crop of stem cells, so that some of them will find their way into the blood stream.   Now that's more accessible.   So just like blood donations can separate out certain types of blood cells, an individual with such circulating stem cells in their blood can be hooked up to a device for a few hours, and thereby "Harvest" a collection of stem cells.  Which can then be frozen and stored, for eventually being re-introduced back into the patient's body. 

So later this week I will begin injecting myself every day with Neupogen, a drug which will stimulate stem cell production.   Then next Monday I will go back to the University of Chicago Hospital, where on Monday evening they will give me another drug which will Mobilize those stem cells, and then on Tuesday morning I'll get hooked up for Aphaeresis for several hours, where that machine will separate out stem cells from my circulating blood.  If necessary, we'll do it again on Wednesday, in case Tuesday's crop of harvested stem cells isn't quite large enough.

Then I'll go back home for the rest of the week, so that my body will have a few days to recover from this stem cell harvesting process, and restore the balance in my bone marrow.

Then the following week, I'll be admitted to the hospital for the main event itself.  The first step will be a dose of an extremely strong chemotherapy drug, which will essentially kill off all of the plasma cells in my bone marrow.  Like completely dead -- no remaining live plasma cells at all.  Then after two days, where my body will flush out all of the dead plasma tissue, then they will warm up some of those harvested stem cells, and put those back into me via an IV.  Then over the next few days those re-introduced stem cells should come to roost in my bone marrow, and morph into healthy plasma cells, and take up home there and flourish.  Rebuilding a new healthy crop of plasma tissue there, which should be less susceptible to Myeloma invasion.  And thereby helping secure the state of remission of the underlying disease.  The only rub here is keeping me alive for those few days between the administration of the "Chemo-Whammy", and when the new plasma cells begin doing their normal work.   That's why this is done at the hospital on an in-patient basis.

I'm told the hospital stay for this process will be 2-3 weeks, and at the conclusion of which I will be able to go home again.  But at that point my immune system will have been completely lost.  All of the antibodies and immunities and vaccinations I've built up over my lifetime will be gone.  And so for quite some time I will be very susceptible to infections and diseases, and will need to be re-vaccinated and undergo various processes to rebuild my immunities.  While I'll be "healthy", that's a relatively precarious condition, and so the risk of infections and so on will be very real for quite awhile.

So that's my report on the 500 pound gorilla in my life, which is the Multiple Myeloma.  But I also owe you a report on the 50 pound gorilla, which was the injury I wrote about in my last installment.   Last week I met with the orthopedic folks, who after doing another x-ray of my shoulder, told me that the fracture had healed sufficiently that I could now begin PT.  Which I understand is short for "Pain and Torture" <g>.    Just kidding.   So I no longer have to keep my right arm strapped down, and can begin using it for light duty stuff. 

When I asked the Dr what kinds of activity I could engage in now, his response was, that aside from any heavy lifting, anything else light I could try gently, and if that hurts, then just stop.  But if it doesn't hurt, then go ahead.   Riding a bike doesn't involve shoulder movements at all, and so that's back on the agenda right away.  Yay # 1`.  

Next was golf -- so I tried gently swinging a golf club.   Surprisingly no discomfort at all.  Tried swinging it more aggressively.  Still no discomfort.   Seems that the right elbow stays relatively close to the right ribs throughout the entire golf swing -- there's actually little movement in the right shoulder during a golf club swing for a right-handed individual.  So I went to the driving range and hit a half bucket of balls and found I was able to hit straight and with no pain or discomfort at all.   Yay #2.   Actually played a full 18 holes this past Saturday at the end-of-season event for the evening golf league I've been playing in all summer.  What a treat.  But we won't talk about the score -- the 4 weeks off hasn't helped.   Sigh.

Next I figured that kayaking is very low impact and would be fine.  So took the kayak out for a spin this past Sunday.  But found after only 10 minutes paddling gently upstream, some significant aching in the shoulder joint materialized.  So there's more going on there than I expected, and so kayaking is evidently off the table, until after I've had time to get the shoulder joint back into better shape.   Oh well.  Have other fish to fry in the short term anyways.

Parenthetically, the PET scan I went through last week commented at length on the shoulder injury -- and also noted fractures in the posterior ribs 2 through 4.  I thought the twinges I'd been feeling in that area was just a bruise -- seems I actually broke three ribs, in addition to the distal end of the clavicle.  Oh well, those have also healed, so no problem. 

That's my report as of today.   With the looming Stem Cell transplant, I am commencing a Medical Leave of Absence from work at the end of this week, so I can devote my entire attention to that procedure and its aftermath.  Have lots of new experiences to go through now in the coming days, so will report on those as time permits. 

The journey into uncharted waters continues ...

Dave Clark

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Thoughts & Well Wishes

Scott and Theresa Wright | Apr 24, 2018
Hey Dave...sorry to hear the news...we just finished this snow ski season on a run at the top of Supreme lift in Alta, Utah. The name of the run is "Challenger", and we were blessed with two feet of fresh Utah powder! We know that you can relate! We also know that you can beat this current "Challenge" and you are in our thought's and prayers always!
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Laura Nowak | Apr 20, 2018
David, David... no surprise that you're "numbering" the hell out of this! You continue to amaze me with your wit and your brilliance. 

Just know that you have a tremendous family behind you that will be praying for you through this "new journey".  We're here for you and we love you.  Keep pedaling, paddling and banging gates mister!!! 

Laura
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