Journal

Journal entry by Dave Clark

Well they say that every journey begins with one small step.
 
Three weeks ago I took what I thought was going to be just such a small step.  But turns out its leading me off into previously uncharted waters.  So I've decided to start this journal, to document the journey, and to keep my friends and family up to date on where all this is taking me.

The quick background is that I'm pretty active for a guy my age (early 70's), still working full time, commuting to work by bicycle (8 miles each way) except when it's raining or ice/snow on the ground, kayaking regularly on the Fox river and elsewhere, waterskiing and walking golf courses in the summertime, downhill ski racing in the wintertime, and so on.  Not your average 70+ couch potato, in other words.  All this is opposition to my occupation in Business Intelligence, which is essentially sedentary.

In the past couple of years I've occasionally experienced periods of breathlessness, always accompanying aggressive exertion.  First -- and most memorable -- experience with this occurred on a ski trip to Snowmass CO in April 2016, when I allowed myself to be coaxed into attempting a relatively long challenging ski run there (Long Shot, 3.5 miles long, ungroomed), with only narrow race skis.  This run starts at just about 12,000 feet of elevation, and getting onto it requires about a 300 foot uphill climb on foot, from the top of the Elk Camp lift.  That climb turned out to be rough going for me, and it took me a good 5 minutes to catch my breath once I got to the top, and was finally ready to put my skis back on and start down.  Didn't take all that long to drop behind the others in the group, and soon thereafter I literally "hit a wall", less than halfway down that run, and simply couldn't keep going anymore -- heart racing and so out of breath after only a couple of turns that it would take me a couple of minutes before I could even talk.   As a former ski patroller, I could tell that something was wrong, so I let my companion call the ski patrol for me, and after they arrived and put me on some oxygen, found I still had an elevated heartrate even after resting for over 15 mins.  So I let myself be transported off that run and down to the bottom.   At 8,500 feet and some rest time, felt good enough to resume my day without further assistance -- just told to stay off that particular run, and the higher elevations.   Yup.  The rest of that ski trip I just limited myself to somewhat less challenging runs, and enjoyed myself just fine.

But on return to the Chicago area, I saw my family physician and described this situation, and he asked me when was the last time I'd had a cardiac workup.  "Never" was the answer.  So he sent me to a cardiac specialist, and subsequently underwent a "nuclear stress test" -- which reported that my cardiac arteries were fine and that my circulatory system was in great shape.  So not that.  Next step was the pulmonologist.  Another type of stress test.  End result there was the finding that my cardio-pulmonary capacity was in excellent shape.  So that's not the answer either.   Next direction was off to a hematologist/oncologist for bloodwork studies.  Only thing that showed there was mild anemia, accompanied by lower-than-normal B12 levels.  So that explained the occasional breathlessness.  Anemia, huh.  No big deal.  So they put me on Oral B12 supplement in hopes that would bring up the B12 level, and that in turn then stimulate the hemoglobin levels as well.
  
Now all of the events above took place over roughly 18 months, until February of this year.  In Feb 2018 the B12 level had indeed gone up, but alas the hemoglobin levels were still down, and had actually dropped even further.  And this past season's ski racing season I was finding myself out of breath at the end of a simple 30 second GS run here at Wilmot Mountain near Chicago, almost at Sea level.   So things were definitely getting worse.  So last month the hematologist said he was still at a loss why the hemoglobin (and other essential blood components) were so low, and said he wanted to do a bone marrow biopsy, and that should get us to the bottom of what was going wrong.

So that bone marrow biopsy was the small step.
  
Parenthetic note:  Some readers here will be aware that I'd been dealing with Prostate Cancer since back in 2013+, including a radical prostatectomy in November of that year, and which was followed up by some radiation treatments two years later, when the post-surgery PSA levels started rising again.   Those experiences were relatively minor bumps in the road for me, and I continued working and ski racing and biking and kayaking and waterskiing through those, and even took up Golf in 2017.  And despite getting older along the way, found my ski racing getting a bit faster each season.  In recent months the PSA rise has slowed significantly, and so has not been of immediate concern for about the past year.
 
But given that Prostate Cancer history, both the hematologist and I were suspecting we might find some Prostate Cancer related activity in the bone marrow, which would tie my anemia (and resulting recent breathlessness experiences) in with the ongoing Prostate Cancer saga. 

But, Nope, the completely unexpected finding was conveyed to me by the hematologist just two weeks ago.  "Not at all what I'd expected to see from the bone marrow pathology, David.  Seems you have Multiple Myeloma.  That's a form of blood cancer which attacks the plasma cells in the bone marrow, and results in side effects in the skeletal system, your immune system, the kidneys, and your blood cell production system."   So that's what was producing what by then had become Acute Anemia -- my hemoglobin level the day they took the bone marrow biopsy sample was so low, that they sent me to the ER for a blood transfusion.  No wonder I'd been so breathless the evening before, when I was skiing locally with friends.  Being a numbers guy, I see that the "normal" hemoglobin range for an adult male is in the range of 14-17.  By Feb mine was down to below 8, and the day of the Biopsy was only 6.5.  So that's less than half of the low end of the normal range.  No wonder I was breathing so hard, my Oxygen transport mechanism was having to work more than twice as hard as it ought to, to deliver sufficient Oxygenated blood to the muscles.

And so that completely unexpected news two weeks ago has set my course onto (for me) previously uncharted waters.  And hence my decision to set up this site and begin this journal documenting the coming journey.  In these past two weeks, I've done oodles of reading, and undergone a number of additional diagnostic tests, and have learned a lot.  And find that there's still a great deal that I have yet to learn, both about the condition in general, as well as the specifics of my particular case, and the eventual treatment(s) that I expect to undertake, and what I will experience as part of those.

From a personal perspective, my emotions have been jumping around a great deal in the past 16 days, since hearing that life-altering report.  The first major whammy is in the first paragraph of most write-ups on Multiple Myeloma.   " ... at this time there are no known cures, although the condition is treatable, and in many cases can be put into temporary remission ...".  But then there are videos on YouTube on the disease, which feature some folks who have gone through more than one treatment / remission cycle, and who have survived 15 or more years since their initial diagnosis, and are still going.  But those are the exceptions, natch.  The overall prognosis and survival rates aren't all that promising.

However, MM is a relatively obscure form of cancer, only about 1 percent of all new cancer diagnoses each year in the US are MM.  And so there wasn't much research into this condition until after the 1960's.  By mid-1990's there were some new treatments which showed promise, and by today there are several major institutions with programs which specialize in MM research and treatment, two of which happen to be located here in the greater Chicago area.  And my hematologist works very closely with both of them.  So lots going on, and there are hopes for developments which might not just put the condition into remission, but actually cure it.  But not yet.

Those of you who know me well, know that I delight in pursuing new and novel experiences, and so I'm embarking on this journey into the world of MM with great interest.  As a relatively fit and active individual, I'm encouraged by the statement that I've seen in much of the literature, that the prognosis for any given MM patient depends greatly on their overall state of health and condition.   And on that particular spectrum, since 2012 I've been making it a point to push toward the more extreme active end, and this statement in the literature has renewed my intent to stay at that end.   To the extent possible, I intend to manage this condition, and continue to pursue life with gusto, instead of sitting back and allowing the condition to manage me.

I'm finding there are many resources out there to help both MM patients and others involved in their care, and I'm intending to take maximum advantage of those.  There is a very active Leukemia / Lymphoma / Myeloma support group which meets monthly at Good Shepherd Hospital here, only minutes from both home and my office, and I've already connected with the leader there and met several of the participants.  Their experiences and insights should be quite valuable, and I intend to take maximum advantage of all I can learn from them.  The horse's mouth, as it were.  And of course then there are the researchers and specialists who are working so tirelessly on this condition.  I have the good fortune of having been connected with Northshore Oncology here in Crystal Lake, which is only 10 minutes from home -- by car that is, by bike it's 25 minutes <g>   And so, much of the initial treatments I should be undergoing will take place there in Crystal Lake, although with oversight from the specialists at either Northwestern Memorial or University of Chicago Hospital, which are the two major MM research/treatment programs in the Chicago area.

Another interesting finding for me, was to hear that Tom Brokaw -- noted journalist and former anchor of the NBC Nightly News for many years -- was diagnosed with MM ( in his early 70's) in 2013, and has written a book on his experiences -- "A Lucky Life -- Interrupted".  I've looked at several YouTube videos featuring Tom and his experiences, and have ordered a copy of his book (along with other books on MM) which I will read soon with great interest.

So the above initial narrative sets the stage, and introduces the key players in my upcoming journey.  I intend to keep this journal up to date as time passes, and as I learn and experience more.  The Love Boat it ain't, but nevertheless, Welcome Aboard <g>

More to come.

Dave Clark.
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Journal entry by Dave Clark

First I must say that I am overwhelmed at the outpouring of support and encouragement that I have received from friends all over, since I put the first journal entry out here last week.  I am extremely touched by all this, and with your ongoing love and encouragement I hope to beat this into remission.
 
In the past week I have read four separate books on Multiple Myeloma, and learned a great deal.  Knowledge is power.
 
One of the things that struck me in all that reading, is the widespread references I saw to bone pain and fractures -- evidently these are typically the leading indicators of something amiss for the majority of folks diagnosed with MM.  And I haven't observed any such experiences myself ... at least not yet.   Last week I did undergo a complete skeletal x-ray survey, as well as a bunch of more comprehensive serum (blood) and urine analyses.   It seems that myeloma cells typically secrete high levels of "M-Proteins", and the presence and levels and makeup of those proteins in the serum and urine of an MM patient are significant indicators of the progression of the disease.
 
So in the followup meeting with my hematologist/oncologist, he told me that all of those came up negative, for me.  Which means I apparently have the "Non-Secretory" form of the disease, and so the blood and urine don't have any detectable levels of M-Proteins.  And the x-ray survey didn't show any indications of bone lesions either.   So my skeleton so far is intact and in good shape -- except of course the finding from the Bone Marrow biopsy, that the soft plasma in the bone marrow is heavily crowded with myeloma cells, which is why my hemoglobin and other key blood components are way down.
 
Seems that this Non-Secretory form of the condition is quite rare -- something on the order of  perhaps 2 percent of all MM cases.   So with about 24,000 new MM diagnoses arising each year in the US, that means that ony about 480 of those are Non-Secretors.  And turns out I'm one of them.  I always did wanna be "Special" -- just not this kind.  Oh well.  
 
Back to the literature.  This Non-Secretory form is rare enough that the books I've got on MM don't have much to say about this -- although I did find some recent retrospective statistical studies of large groups of MM patients over the past, and those appear to show that while the survival rates of secretors and non-secretors back before the late 1990's were about the same, since the newer treatment protocols have evolved in the later 1990's, the survival rates for non-secretors has improved to a significantly higher level than that for the larger numbers of secretors.  So that sounds like good news.
 
However the offset is that without those tell-tale M-protein indicators in my blood or urine, it took until last month, when my anemia got so bad that I needed a whole blood transfusion, before we finally got around to doing a bone marrow biopsy -- and that's where the MM condition finally popped out.  Looking back over my experiences with breathlessness while skiing over the past few years, it looks like the first signals were over two years ago.  So I've got a pretty advanced case by now.  Which they classify as Stage III-a.   So the next step for me will clearly be aggressive chemotherapy.
 
On a related topic, I find that the most likely drug that will be used in the chemotherapy treatment for MM is something named Revlimid -- in fact this is a slightly improved version of the drug Thalidomide, which some of you may recall was at the heart of a major drug problem in the 1960's and 1970's.  Small doses of Thalidomide apparently were found to be helpful in alleviating morning sickness in pregnant women, and it took almost a decade for the correlations between birth defects and the use of Thalidomide to be identified.  But that drug clearly was the culprit.  But in stronger dosages, it was later found to be quite effective in the treatment of MM and other blood cancers.  Then in the early 2000's, a variant named Revlimid was subsequently developed, and approved by the FDA about 10 years ago, and has proven to be even more effective, but with fewer negative side effects, than the original Thalidomide.   So today Revlimid is the drug of choice for treating MM.
 
And this does not require adminstration by IV -- instead it's a simple pill, taken daily.  So that sounds like good news.
 
But (there's always a BUT, aint't there) ...  with a price of about $500 ... per pill.  Yes that's the daily cost of this stuff.  Hearing that scared the daylights out of me.  Since so many MM cases are for folks in their 60's and older, most are retired.  And I understand that under the medicare Part D drug coverage, the monthly co-pay for Revlimid comes out to about $600 per month, or about $7,000 per year.  Yikes !!
 
So the next stop was to see exactly what the prescription drug coverage provisions are under the Blue Cross / Blue Shield PPO plan that I have through my employer, for Revlimid.  Turns out they divide various specialy drugs into different cost bands, with the monthly co-pay amounts dictated by the band each drug falls into.  Of course Revlimid is the fifth (highest) co-pay band.  Drum roll ... which works out to a co-pay amount of $60 per month.  Now THAT  is exceptionally good news.  I'm sure there will be other unpleasantness ahead in all this, but at least this part of the puzzle isn't going to bankrupt us.   Whew.
 
Well that's about all the news for this week.  Next week I have appointments with the specialists at both Northwestern University (monday), and at the University of Chicago (thursday), for their perspectives and second opinions, based on all the tests and data that we've collected on me.   So all that will be folded into my next meeting with my primary hematologist/oncologist the subsequent Thursday, May 10th -- and that's when we'll firm up my treatment plan, which should begin almost immediately thereafter.   That's when things will get interesting ( ? !! ? )
 
So seeing that my skeleton is relatively intact, and with the weather in mid-Wisconsin still definitely winter-like, I took a Sunday run up to ski at Granite Peak (Wausau WI), the week after I got the blood transfusion.  To my great delight, I found myself decidedly less breathless at the end of each run, compared to my skiing experiences the weeks immediately preceding.  Indeed, after about three hours on the hill, my quads were hollering at me that it was time to call it a day, instead of my lungs.  Now I have a much better appreciation for what all the Blood-Doping chatter is all about -- sure worked for me !!
 
Since then, the weather here in the Chicago area is finally feeling spring-like, and so I've been on the golf course a couple of times already, and intend to do even more in the next couple of weeks.  Only issue there is I'm finding some of those long uphill fairways arduous, and so for the moment I'm opting to ride a golf cart instead of walking.  But looking fowards to getting my anemia situation improved, so that I can chase that little ball on foot again <g>
 
I'll be back here next week, with insights from my meetings with the big brains at NW and UC.
 
The saga continues ...
 
Dave Clark.
 
 

Journal entry by Dave Clark

As I have come to learn, the current-day “conventional” treatment regimen for Multiple Myeloma usually consists of three phases …

1.  “Induction” Chemotherapy, to fight back the invading myeloma cells that are crowding out the normal healthy blood plasma cells in the bone marrow.  This treatment phase would consist of several 4-week “cycles”, with each cycle administering a combination of specific drugs which have found to be effective in accomplishing the desired result.

2.   That is then generally followed by an Autologous (self-supplied) stem cell transplant procedure, which consists of three phases …

a.       Harvesting a large quantity of the patient’s healthy stem cells, by tricking them out into the patient’s bloodsteam, and then capturing them through an IV, running that IV line through a machine which separates out the stem cells, then returning the remainder of the blood right back into the patient.  The captured stem cells are then frozen and kept ready for later re-introduction.

b.      Then a super-strong dose of chemotherapy is administered, to kill off the remaining diseased blood plasma,

c.       Finally the patient’s healthy harvested stem cells are defrosted and re-introduced, which would then rebuild the bone marrow plasma system.

3.    At that point the patient is hoped to be in remission state, with little or no evidence of active disease in their blood plasma, whereupon the “maintenance therapy” phase begins.  This phase entails ongoing lower doses of chemotherapy drugs, which are hoped to hold off the inevitable return of the disease to an active state, for as long as possible. 

So with that general outline, Dr Soble, my local hematologist/oncologist with Northshore Oncology in Crystal Lake, is right next door to my home in Algonquin.  And while they have their own chemotherapy infusion center and lab, nonetheless Stem Cell harvesting and tranplantation is of course beyond their scope.  For that, we’ll need to engage the services of specialists in such procedures.  As I mentioned previously, the Chicago Metropolitan area happens to be home to not just one, but two of the leading Multiple Myeloma Research / Treatment centers in the United States – Northwestern University Medicine, and the University of Chicago Medicine.  And turns out both of those are “In Network” for my employer’s Blue Cross / Blue Shield health care plan.  What a luxury, to be able to choose your specialists, and have them within reasonable transportation distance.  Rather than needing to travel to California or Texas or New York or Minnesota.

But how to choose?  Well since it is accepted practice to seek 2nd opinions from the experts in such cases, my daughter Evelyn’s suggestion was to get second opinions from the experts at BOTH institutions, see their facilities firsthand, meet their staff, and see how well they agree or disagree on their findings and recommended treatment regimens – and then make the decision.  Then we would undergo the Induction chemotherapy phase at Northshore Oncology, in concert with the recommendations from the selected University program specialists.

So this past week is when we were able to get in to see the experts at both of these two institutions.  So skipping over a great many details, I was extremely impressed with the facilities and professionalism and warmth of reception at both of these institutions, and particularly with the great depth of attention they both paid to the myriad findings of all the labwork and diagnostics which I’ve undergone in the past two weeks, along with my narrative of recent experiences which led up to the recent bone marrow biopsy that finally disclosed that it was Multiple Myeloma at the root of my anemia struggles in the past few years.  The non-secretory nature of my particular case was a significant point of the discussion with both sets of experts.  After detailed review of all that information, both offered the same conclusion, that I’ll need to get used to frequent bone marrow biopsies, in order to most accurately assess the state of my myeloma and the precise effects of the treatments from time to time.  Wonderful.  But it is what it is, and the information obtained therefrom will be most concise – getting right to the heart of the matter, as it were <g>
 

One very important factor in the overall treatment recommendation is with respect to a possible stem cell transplant.  Which has been repeatedly found to add significantly to the length of remission of the disease.  But which is a pretty arduous procedure, and generally not undertaken for patients over the age of 70.  So at 73, I’m well past that cutoff.  But the experts at Northwestern and the University of Chicago both came to the same recommendation, that despite my age, given my general state of health and fitness and active lifestyle, and the relatively aggressive nature and progression of my particular disease, they both recommend that my treatment goal would be to include a stem cell transplant, presuming of course that the induction chemotherapy is sufficiently effective in fighting back the disease.

And the recommendations for the specific drug combination to be used in the chemotherapy phase were similar, but not identical.  Skipping over the gory details, there is one specific cancer-killing element in the mix where their recommendations differed – drug K recommended by institution C frequently produces complications in the cardiovascular and pulmonary areas, whereas drug V recommended by institution N frequently produces neuropathy.  Of course neuropathy sounds less scary than cardiovascular or pulmonary complications.  However, the cardovascular / pulmonary complications of drug K are transient and of short duration, appearing immediately following administration of drug K during the active chemotherapy phase, whereas the neuropathy effects from drug V appear to become a permanent condition.  So choose your poison, David.  Talk about being on the fence.

Well at this writing I’m still on that fence.  Next week will see us convene a “Summit” meeting, with Jean and I and my daughter Evelyn meeting with Dr Soble, and the four of us going over these 2nd opinions and their respective recommendations.  Then we’ll chart a course, fasten our seatbelts, and begin active treatment immediately thereafter.

I once heard that any good serial story should have each episode end with a “Cliffhanger” – so I guess this is a good time for me to sign off on this week’s installment <g>
 

But I cannot close without telling you how greatly we appreciate your collective support and prayers. 

More to come.

Dave Clark

Journal entry by Dave Clark

Since the last installment, we’ve been doing lots of reading/study and consultations, and have made the decision to “affiliate” with the Myeloma Research and treatment program at the University of Chicago Hospitals, where (hopefully) an eventual Stem Cell Transplant procedure will be done sometime later this fall.  In the meantime, following the recommendations of Dr Andrzej Jakobowiak of the University of Chicago, we will tomorrow begin a 16 week long Chemotherapy regimen, to be administered by Dr Michael Soble and his staff at Northshore Oncology in Crystal Lake, IL.

This regimen will entail the administration of three different “primary” drugs, and possibly several other supporting drugs, depending on what side effects we may encounter along the way.  From an overall perspective, a Chemotherapy treatment “Cycle” is four weeks long, 28 consecutive calendar days, with the drugs being actively administered through the first three weeks, on days 1 through 21, and then the final week, days 22 through 28, is a week of “Rest”, where none of those primary drugs are being administered.

Given the state of the myeloma disease I have at this time, the experts are recommending we undergo four consecutive cycles of such treatment, hence
  a total of 16 weeks, starting tomorrow and extending into the first week of September.  Then if the stars have appropriately lined up at that time, we’ll embark on a stem cell harvesting exercise, followed by the “chemo whammy”, and then by the stem cell transplant procedure itself.  Then after the re-iintroduced stem cells have settled down and rebuilt a new crop of plasma cells in my bone marrow, the myeloma will hopefully be in remission, and then finally we should embark on a longer range “Maintenance” (low dosage) chemotherapy regimen, and hopefully then all the active symptoms of Myeloma – particularly the Anemia in my case – should be gone, and a relatively full life can be resumed.

Boy that sounds so simple when reduced to one single paragraph, doesn’t it?

Well we’re sailing off onto (for me) previously uncharted waters, so it’s prudent to have some “Sea Monster” plans at the ready, in order to deal with any such “Sea Monsters” that we may encounter along the way.  So – yesterday Jean and I spent almost two hours with Anna, an oncology Nurse at Northshore Oncology, going over the details of the drug administration regimen we’ll start tomorrow, and talking about what those drugs are each supposed to accomplish, how they need to be taken (or administered), and what side effects may arise as a result thereof.  Boy they could write a book.  Wait a minute, I think I may already have a couple of those (books). 

But Anna had created a handy little folder for us, which by my count just now, consists of 122 pages of essential information, on many subjects.  Pop quiz will be tomorrow afternoon.  Yeah sure.

Actually much of what’s in that folder looks a lot like material that I’ve encountered in some of the books I’ve read in the past couple of weeks.   But going through that folder will be my homework for tonight.  This collection of three primary chemotherapy drugs are extremely strong, intended to perform significant work on cutting back on this disease in my bone marrow, and as with all things, there are tradeoffs.  Some people “tolerate” these drugs very well and experience little negative side effects, but then again some patients have significant reactions.   So yesterday was a day of “Preparedness” for Jean and I, where we got a couple of additional “as needed” prescriptions, as well as stocking up on several over the counter items that they recommend we have on hand – “just in case”.   For a guy who never had any regular prescription drugs until Dr Soble prescribed B-12 for me last year, we’ve now created our own in-home pharmacy, which takes up just about half of the countertop space in my bathroom.

One more area of detail that I might as well toss out for those who are interested in such details.  The weekly drug administration schedule for weeks 1-3 of each 4-week Cycle. 

The first of the key drugs is Revlimid, the primary myeloma-killer, which is the REALLY expensive one.  Got the package yesterday via Fed-Ex, from the specialty pharmacy in Phoenix, with a small plastic bottle containing 21 small capsules – with a MSRP of $600 – per  capsule.  Yes that’s $12,600 worth of Revlimid.  Thank you Blue Cross / Blue Shield for your prescription drug coverage – my co-pay for this cycle 1 supply comes to $60.  Supposed to take one capsule every day on days 1-21 of this first cycle.  They tell me that this can tend to produce drowsiness, and so the recommendation is to take it late in the evening, and then let it lull me to sleep – while perhaps sleeping through some of the immediate minor side effects.  We shall see.

The next key drug is Kyprolis, which is another myeloma-killer.  While nowhere near as expensive, this particular drug isn’t effective orally, and so this one is administered intravenously.   But not every single day of each week – instead only on days 1 and 2 of each week.   And the quantity being infused on each of those two days only takes less than 10 minutes, so I won’t be spending hours in the infusion therapy room at Northshore Oncology.  Of course each administration involves some prep and setup and pre-administration blood content analysis, so they tell me I should expect to be there for about an hour every Thursday and Friday afternoon, on weeks 1 through 3 of each cycle.  So that’s only six IV sessions per 28 day cycle.  I can live with that – truly.

But taken alone, Kyprolis produces some potentially nasty side-effects, and so that’s where the third primary drug comes into play.  Dexamethasone (decadron) is a powerful steroid, which mollifies most of those nastier side-effects of the Kyprolis.  Decacron is a small tablet – but the dosage consists of taking five of those little suckers, an hour or two before the scheduled Kyprolis infusion.   And only on those days when the Kyprolis is being administered.   So that’s only going to be on Thursday and Friday of weeks 1-3 of each cycle.   But … Decadron should NOT be taken on an empty stomach.   So that means my Thursday and Friday mid-day regimen will be lunch, followed soon thereafter by those five little Decadron tablets, then head off to Northshore oncology for my Kyprolis IV infusion.  And then home, or whatever other activities I find I can tolerate, after getting these drugs into my system(s).

Ever the optimist, I signed up two months ago for a Thursday evening 9-hole golf league sponsored here by Sears, and hoping that I’ll be able to continue playing Golf on those Thursday evenings.  We’ll know a lot more after tomorrow evening <g>

“Better living through Chemistry” – as I recall the DuPont slogan from years back.

Fasten your seat belt, David – tomorrow we put the pedal to the metal, on the Chemo Express.

More to come.

 

Journal entry by Dave Clark

Now that I’m past the first two full days of my Chemotherapy regimen, I’ve experienced and learned a great deal in those 48 hours, and so have decided to provide an update right now, rather than waiting until the end of this first full week.  Particularly since the first two days are more complicated, including both Intravenous as well as Oral drug administration, at different times of the day.  The remaining 5 days of each week will consist just of oral medications, taken in the evenings.

The quick result on those first two days is that I’m extremely pleased to have NOT experienced any immediate administration-related negative side effects – no nausea/vomiting, nor allergic reactions, nor cardiac abnormalities, nor diarrhea.   So the portable “side effect pharmacy” package I’ve prepared and been carrying with me, containing anti-nausea prescription and Imodium (anti-diarrheal) and Benadryl (rashes and other reactions) and acetaminophen (Tylenol) hasn’t been needed yet.  But best to continue to be prepared for awhile, wherever I go.  

But nonetheless have had some other experiences in these first two days, and learned there are lot of nuances involved with regular Intravenous drug infusion and the mechanics thereof.  So keep in mind that one of my secondary goals throughout this chemotherapy regimen is to continue to maintain my regular lifestyle and activities, as much as possible.   So I want to be able to keep riding my bike(s) regularly, and taking the kayak out regularly, and golfing as much as possible.   To that end, with severe anemia (lowered hemoglobin levels and breathlessness attendant upon significant exertion), that means several things …    

  • My paddling rate in the kayak is going to be lower than it was two or more years ago, when I did the 2016 annual Des Plaines river Canoe and Kayak marathon – 18.6 miles in 3 hours and 15 minutes – but hey my general local kayak excursions are more for simple exercise and sightseeing, so whatever pace I can manage comfortably is just fine.  So maybe a 2 hour trip now only takes me 6 miles instead of 8 miles – it’s still two hours of comfortable aerobic full-body exercise.  Everything I read says that continued fitness and conditioning is one of THE most important factors in achieving success through these treatments. 

  • On the golf course, I’m finding that walking up long uphill fairways is now just too arduous – have to stop and catch my breath several times, and that slows down the rate of play.  So for the moment I’ll have to take a golf cart.  Still get lots of exercise walking around setting up shots and around the greens and tees, so it’s still good exercise.  And whenever we get to the point where my hemoglobin levels move back to higher levels, then I intend to resume walking again.  We can do this.

  • My pedaling speed on my 27” hybrid bike is going to be lower than it was two or more years ago.  Well there, I still wanna commute to work and do other local travel by bicycle, whenever the weather conditions are suitable.  Why not save on gas and get some exercise in concert with other such short trips – offsets the essentially sedentary nature of my daily office work.  So such trips on my regular bike(s) would now take longer than they used to a couple of years back, before the anemia effects started to show.  In past years, I could maintain a pedaling rate of 13-14 mph, but by last spring I found I was down to about 10-11 mph, making such trips significantly longer, and by late fall this had further dropped to 8-9 mph on the daily commute rides.

    Well I have just the answer there – through “Crowd-funding” discoveries made last year, I have acquired two “E-Bikes” – bicycles which incorporate a small electric motor in the rear wheel hub, along with a high-capacity rechargeable lithium battery built right into the frame itself.  Now these bikes have normal bicycle gearing, with a 7-speed cassette shifter, just like most other bikes.  I got one such full-size 26” fixed frame E-Bike, equipped with fenders and saddle-bags and so on, which will be for to/from work and other local travel from home – Sears office (Hoffman Estates) is 8 miles south one way, Northshore Oncology (Crystal Lake) is 7 miles north, and Good Shepherd Hospital (Barrington) is 7 miles east.   But with the big E-Bike – “Flash” is the name, www.flashbike.io, for those interested in more details – when engaging the “Pedal Assist” feature (with available assist levels from 1 to 4) – then I just pedal at whatever level of force I feel comfortably in applying, and then the pedal assist just adds to that.  So on the level, at maximum pedal assist, I find that Flash can maintain about 22 mph.  Wow !!  So that’s significantly faster than I could run my old 27” hybrid back when I had better capacity than I do now.  Really Wow !!   And range-wise, I find I can ride Flash to work and back without an interim charge (16 miles) and still have about 1/3rd capacity remaining when I get home.   So the effective full-charge range is about 25 miles.  This is definitely the way to go, for somebody like me with severe anemia.  The one way trip to work on Flash now takes me no more than 30 minutes, and by car during “rush hour”, it’s about 20-25 minutes.   So I’m getting 30+30=60 minutes of aerobic exercise just about every day, and at a daily time cost of no more than 20 minutes over commuting by car.  Plus now-regular side trips to Oncologist or Hospital, as added bonuses.  Best investment I ever made. 

    And then for traveling – about 10 years back I got myself a really sweet little Dahon folding 20” bike, which when folded up neatly can be readily carried inside the rear of the Mazda 5, and also carried on buses and commuter trains, and in a suitable carry-case even as checked baggage on airlines.  Has been really great for local movement around waterski tournament lake sites for several years.  Also an absolutely great transit commuting bike – ride from home to train station, fold up bike and carry aboard commuter train, then at downtown station unfold again and ride to office or other downtown destination, then fold up again and take it inside and stick it under a desk or shelf.  No huhu. 

    B
    ut that Dahon is all pedal power, which I’m not doing so well at these days.  So enter “Mate” – www.mate.bike, for those interested in detail – which is a 20” folding E-Bike, also with 7 speed shifter for pedaling, and with 5 levels of electric pedal assist.  Slightly less powerful motor than Flash, but a larger capacity battery, so I find the effective full-charge range for Mate is about 35 miles.  Speed on the level with max pedal assist is about 17-18 mph.  And on the uphill stints can still maintain about 12 mph, where I used to be doing only 5-6 mph on the un-assisted 24-speed hybrid in compound low gear, or on the folding Dahon.   Sweet.  My first downtown visit to Northwestern University Hospital 2 weeks back I did so with the Metra suburban commuter rail service here in the Chicago area, taking Mate along for the local home-to-station and downtown station to Northwestern legs of the trip.  Total travel time that way was only slightly longer than by car during Rush Hour on the Expressways, and didn’t have to deal with the exorbitant downtown Chicago parking costs.  And the city has developed controlled bike lanes on most of the major streets downtown in recent years, so I found there are lots of folks riding bikes in the downtown areas.  Lots different from when I used to live in the city and work downtown 20+ years ago.

So much for my intended activity details.  Now how does this new  Intravenous Infusion regimen factor into my desired activity game-plan?  That’s been a subject which has been bothering me ever since I learned that at least one of the drugs I’ll be taking will be administered by IV.  Well let’s start with one aspect – the actual connections and schedule.  As mentioned earlier, the Kyprolis IV infusion will be only two concurrent days each week, on Thursday and Friday.  Now they could do each one with a completely separate IV “Stick” (insertion hookup), but over time that will lead to some degree of vein collapse, which of course is not a good thing.   Since my short-term program of 4 cycles of chemo, and with 3x2=6 Kyprolis infusions per cycle, that’s a total of only 24 IV infusions for the full course.  So that doesn’t yet warrant inserting a more permanent IV “Port”, which entails a surgical procedure.  And with those two infusions per week, on concurrent dates, the oncology infusion clinic nurses suggested that we could do the IV hookup on Thursday, and then leave the catheter into the vein and the flow control valves and attachment apparatus in place overnight, and so then on Friday just hook up to that again. and then remove it all after we’re done with the Friday infusion.   Hey that’s a twofer – so only 12 IV sticks instead of 24 for these 4 cycles – I like the sound of that. 

However, you may recall my earlier mention of having pre-paid for the Sears 9-hole Thursday evening golf league, through this summer season.   Which means I’d want to find a way to play golf with the IV attachment apparatus left in place over Thursday evening.   Typically, IV insertion points are into veins inside the elbow, or on the back of the hand, or in the lower arm just above the wrist.   Which are all joint areas – and those joints come into play when swinging a golf club.   Hm-m-m-mm.  


So when I got to Northshore Oncology this past Thursday afternoon for the first Kyprolis infusion session, I explained my desires to Beth – the oncology administration nurse who was going to be helping me through the loss of my “Infusion Virginity” – and she figured out that we could do the insertion point into a vein a few inches above the wrist joint, on the inside of the radius bone, which is an area where near-surface veins can be found, and which is far enough away from the wrist joint and doesn’t flex.  She did so without any difficulty hitting a vein there.  Looking pretty good there, Beth.  So we proceeded with the rest of the pre-infusion blood test draw, then ran in some hydration saline, then the Kyprolis itself, then another flush, then disconnected the lines and taped up the valves and connection point apparatus on the back of my lower arm above the wrist, and put an elastic sleeve on top of all that.   Hey good to go – full flexibility at elbow and wrist and all hand joints – full use of arms and hands on both sides, with no discomfort on the hookup arm.  Looks like this was gonna work just fine. 

And with no adverse side effects having shown up at that point, I was feeling fine, and had over 90 minutes before that evening’s scheduled tee-time for my partner and I.  So was raring to get out the door and on the way to the golf course.  But … and there always seems to be a “But”, doesn’t there – seems mother nature had other ideas.  The lab gals came back to us with the news that the pre-infusion blood draw they did at the start showed that my hemoglobin level had now dropped down into the Acute Anemia territory again.  So – “Do not pass Go, do not collect $200 – go directly to the Good Shepherd ER for typing and cross-match – NOW”.   So that would stage for another transfusion of Packed Red Blood Cells, which they had already schedule for 8:00 AM the following Friday morning.   Well Good Shepherd is only 12 miles away, so mebbe we can make it over there and still make our slated tee-time after that.   But after we got to  the ER and checked in and saw the backlog of folks sitting patiently in the Lab waiting area. it was clear that golf Thu night wasn’t going to be in the cards after all.   So texted my regrets to my partner and just sat down to wait.  Good thing I called it off then, took over an hour before they finally called my name for the blood draw, and at that point Paul as already on the 2nd hole.   Oh well.

So didn’t get a chance to try out the golf swing on the course with the IV attachment apparatus still in place.  But when we got home, I did dig out my golf glove (left hand, with the IV hookup on my left arm). And then took out my driver and tried a few swings there in the front yard.  Felt OK, didn’t feel any discomfort in the elbow or wrist or hand, so could focus my attention on the mechanics of my swing, instead of on whether there were any twinges from that IV apparatus still in place.  By golly I think this is gonna work.  Yippee <g>   Then put the golf stuff away and inside for dinner.  Ate very well – the docs say the Decadron (steroid) enhances appetite.  Yup.

Then later that Thursday evening we went through the new daily oral medication regimen – but only after a late evening snack first – some of these oral drugs should not be taken on an empty stomach.   Start with Antacid, then the big Revlimid capsule, then Allopurinol (Uric Acid Buildup Preventative), and then the prescription B-12 supplement, next a 85 mg Aspirin (clot prevention).  And then to bed.  Slept comfortably, and on awakening in the morning, found no evidence of side-effects.  Yay Rah !!   So rode Flash over to Good Shepherd for the Packed Red Blood Cells transfusion. 

Including waiting time, and hookup and prep time, plus transfusion time, plus added hydration and stabilization time, by the time I got back on Flash and got home it was time for lunch, then took the Friday pre-infusion Decadron (steroid) dosage, and then onto the Mate Bike and off to Northshore Oncology for the Friday afternoon Kyprolis infusion.

By now, that second Kyprolis infusion was routine, and no problems.  Hooking back up the apparatus on my left arm, still in place from the afternoon before, was simple and completely painless.  Plus, no noticeable side-effects on the Kyprolis administration this time either.  Really hoping that trend continues.  

I brought along a small package of 20 Fanny May “Mint Meltaways” for the infusion clinic staff – at my daughter Evelyn’s suggestion, pieces small enough that everybody could try at least one – I wanna take good care of these professional and friendly and helpful folks, who are going to be taking good care of me.  Call me the candy-man <g>   Next week we’ll try little two-bite brownies.  Future friendly “Thank You” snack suggestions very welcome, folks. 

By the way, with my mobile android smart phone along through all of the above, and while hooked up for the lengthy transfusion in the morning, and through an hour here and there throughout the day, found I was able to keep up with the daily flow of business emails throughout the day – seems all these facilities have patient-access wi-fi service, so I could multi-task and be productive for my employer, as well as attending to my own personal medical needs. 

Then after supper – and a Cubs win against the Reds last night, after a rain delay – then a late evening snack and then through the evening oral medications again, and then to sleep. 

On arising this morning, still experiencing no negative side-effects, so we’re now completely done with the first two days of my new daily regimen.  And as you can see above, have learned a great deal about what my new Thu-Fri daily activities are going to look like – excepting the PRBC transfusion, which was of course a completely unplanned “Sea Monster”.  The rest of this Sat-Sun weekend, plus the Mon-Wed days 5-7 of the first week, should by now be relatively routine.  At this point we seem to not have experienced any administration-related negative side effects from any of the primary drugs, which is a HUGE relief.  However, then there are a raft of possible other side effects, which can emerge from the accumulative effects of all these drugs – so we’ll be vigilant regarding these over the ensuing weeks.  

Life goes on. 

This afternoon is the Annual Awards party for the CMSC (Chgo Metro Ski Council) Alpine Race program, so this will be an opportunity for me to spend some time with my downhill ski race friends.  Last year (2016-2017 race season) I managed to achieve first place in my “C Men” class for the overall season, and got a very nice personalized jacket for that accomplishment.  However, with the increased breathlessness I was experiencing over this 2017-2018 season, I didn’t fare so well this year, but it will be good to see all these wonderful downhill ski race friends one last time, before shifting solidly into summertime sports mode for the next few months. 

If these full 4 cycles of Chemotherapy treatment accomplishes what they are intended to, then Sep-Oct will be when I’ll go through the Stem Cell transplant, and hopefully then my myeloma will be in remission, and I should be back in condition of ski race again when the snow flies next December.  I had thought I may have to sit out next ski season, but the specialists tell me that with the autologous stem cell transplantation protocol (ie putting back in your own harvested stem cells), there are no rejection issues to deal with, and the recovery and bone marrow plasma rebuild time is quite short – weeks rather than months, which is the norm when donor tissues are being transplanted.  

But that last paragraph is looking a LONG way into the future, and represents the “Best Case” scenario – and  there’s a great deal we have yet to go through, as we continue to sail off into this sea of uncharted waters.   So we’ll see what else crops up along the way.   Until we start seeing some positive effects from the active myeloma cancer cell kill-off – the primary goal of this Chemotherapy regimen – we’ll still have the severe/acute anemia battles to deal with, and so there may be yet more PRBC transfusions in the coming weeks.  

I’m finding the ongoing love and support from family and friends, in the various extended waterski and downhill ski and golfing communities that I’ve been fortunate to participate with, has kept my spirits high and outlook positive.  As I think y’all can see from these first few installments, I’m committed to doing my best to manage this disease and my treatment, rather than having this disease manage my life. 

So far so good.  We’ll keep you in touch as this saga continues to unfold.  

More to come …  

Dave Clark.

Journal entry by Dave Clark

Well I see that almost seven full weeks have elapsed since I posted the last update on this saga – which puts me now at Chemotherapy Cycle 2 day 23, where the last update was at Chemotherapy Cycle 1 day 3.   So now I’ve got almost two full 28-day Chemotherapy Cycles in my past, whereas the last update I posted was mostly speculative. 

My how much I’ve learned in these past 7 weeks of Chemotherapy treatment.

And immediately on rereading the first two paragraphs above, I see that I’ve already used the word “Chemotherapy” four times.  Where I left off on my last journal update, I made a glowing statement about my intention to manage this process, rather than having this process manage me.  Now on beginning this retrospective on the first two cycles, I’m finding that was a bit ambitious.   Seems that the Chemotherapy treatment has become THE number one aspect of my day-to-day activities after all.  But we’re doing the best we can manage.

Before getting into some of the detailed experiences of these first two cycles, it’s probably worth re-stating the situation with my Multiple Myeloma disease, and the objective of this planned Chemotherapy treatment regimen. 

So to vastly simplify the situation, the past progression of this disease (over the two years since the effects of the resulting Anemia first appeared), has led to more than half of my normal Blood Plasma cells (in the bone marrow), having been displaced by these aggressive cancerous myeloma cells, which do no good at all in terms of the normal function of the Blood Plasma, in producing White and Red blood cells, and platelets.   The Red blood cells in the bloodstream deliver freshly oxygenated blood and supply fuel to the muscles, the White blood cells are the backbone of the body’s immune system and fight disease and infections, and the platelets do the work in promoting clotting in cuts and physically damaged tissues.   Consequently my CBC (Complete Blood Count) numbers in all three of those areas have slid to significantly lower than they ought to be in a normal healthy adult male.  So the reduced Red Counts (and hemoglobin levels) are the root of the Anemia, the reduced White Counts make me more vulnerable to sicknesses and infections, and the reduced platelets make me more susceptible to bruising, and to more extensive bleeding should I be injured in any fashion. 

Fortunately over the past two years I’ve only experienced breathlessness consequent to the Anemia – otherwise no injury bleeding nor infections or sicknesses.  But the potential  for problems in the latter areas have been progressively growing, in the background, and represent factors which should not be overlooked.

So much for the situation statement.  Now to the goal of the Chemotherapy – to kill off those aggressively cancerous Myeloma cells in the bone marrow, so that there’s room for normal healthy blood plasma cells to flourish and resume performing their normal functions.  However, while the Chemotherapy drugs are ones which extensive research has shown to be effective in killing off the cancerous Myeloma cells, at the same time they’re also gonna be killing off some (lesser amounts) of the healthy plasma cells.  So given the starting point with reduced levels of Red and White Cells and Platelets, the treatment is going to further reduce the “Good” plasma cells and their intended products.  So that’s what we have to keep a very close eye on, as the chemotherapy treatment progresses.

So to recap the results of these first two Cycles, I am VERY pleased to report that I have NOT encountered any significant side effects of the Chemotherapy drugs themselves.  About the only side effect experienced at all was some skin rashes experienced a couple of times during the first cycle, but some Benedryl and Hydrocortisone cream cleared that up quickly enough.  Otherwise, no digestive upsets, nothing untoward from the Chemo drugs.   However, the Chemo drugs did result in further depression in the levels of Red Blood Cells and Hemoglobin, and White Cells, and Platelets, and those further depressed CBC levels were the more noticeable effects.  The platelet levels dropped off a great deal, and wherever I’ve been stuck, resulted in significant bruising, along with some occasional contact bruises (one bike fall plus other day-to-day contacts).  And also the White Blood Cell Counts dropped significantly, which further depressed my already compromised immune system – led my oncologist to recommend that I not expose myself in public, even to go to the office.  So my superiors at work have agreed to allow me to work from home, and avoid such contacts.  Fortunately have not contracted any infections.   The most noticeable area was in the Red Blood Cell levels.   Had already been across the boundary level into Acute Anemia (Hemoglobin Level below 7.0) back in March, before treatment began, and that triggers the need for a supplemental Transfusion of Packed Red Blood Cells, to get back to an Anemia level of merely “Severe”, rather than “Acute”.   And also those further depressed Hemoglobin levels have left me quite lethargic.  Tried to play Golf into the second week of Cycle 1, and found I couldn’t hardly climb up onto a green from a sand trap at that time.  So skipped golf in Cycle 1 weeks 2 and 3 and just stayed home.

And over this 7 week period I have triggered Acute Anemia levels four more times, about every other week, each of which resulted in need for a further Packed Red Blood Cell (PRBC) transfusion.  The crew at the Transfusion center at Good Shepherd Hospital and I are now on a first-name basis – they’re really what’s keeping me alive and functioning through this treatment.  During Cycle 1, after I began working from home, about the only exercise I got was riding my e-Bike to Northshore Oncology for the weekly Kyprolis infusions, or to Good Shepherd Hospital for PRBC transfusions.  Better than nothing.  But not what I had been hoping for.

Each full four-week Chemo Cycle entails Chemo drug treatment on days 1 through 21, then a full week off on days 22 through 28, to recover a bit.  During that 4th week of Cycle 1 I felt quite a bit better, and resumed playing golf, and found I was able to enjoy that again.   We won’t talk about the scores, tho.  But getting out and enjoying the outdoor experience was great.   And into Cycle 2, while my CBC counts continued at very low levels, I felt better than at the same points during Cycle 1, and have been able to continue playing Golf through all of Cycle 2.  So guess my system has become adapted to functioning with those lower count levels – just need to take it slow and easy on anything that entails exertion.

So as I arrive at the Rest week at the end of Chemo Cycle 2, that’s my “New Normal” – slow and easy.  As noted earlier in this Narrative, I have the “Non-Secreting” variant of MM, which means that normal blood serum tests and urine tests aren’t very useful in tracking the progression of what’s going on with the Blood Plasma situation inside my bone marrow.   So today I underwent a second Bone Marrow Biopsy, the results of which I will get next week, which will tell us what’s REALLY going on inside, and how effective these first two Cycles of Chemotherapy have been.  From CBC count levels, and how I’ve been feeling, it’s been essentially unchanged over these past 7 weeks.   So I’m really hoping to see some progress in these new Biopsy results.

Fingers Crossed ...

 

 

 

 

 

 

 

Journal entry by Dave Clark

It’s been two weeks since my last update.   And my oh my, what a busy 14 days this has been.

I see that I closed my last update with a mention that I’d just had a 2nd Bone Marrow Biopsy done at North Shore Oncology (NSO), and that I was hopeful that we would see favorable results.  I neglected to mention that my specific NSO Oncologist, the physician with whom I have been working for the past year and a half, elected to retire at the end of June – yes just as I was doing that last update.  So my appointment the following week was with a new and different NSO Oncologist.  Now NSO is a highly respected group practice in this field in my immediate area, and so the transition to a new physician in that practice should be seamless.   And while my new NSO Oncologist – actually my case has been transferred to the director of the practice – has full access to all of my past medical records and so on, he has not personally “Lived” through any of this with me.  And so his level of intimate knowledge of all those gory details on me, is of course nowhere near as complete as his predecessor's.  That’s just a parenthetic background item, but should help put some of the following narrative in context.

So last Thursday July 12th, I met my new Oncologist for the first time, such in-progress Dr visits being done about once a month, in conjunction with a normal NSO Infusion visit.  That date last week was the first day of Chemo Cycle 3, so I was primarily there for the first infusion, and “while I’m in the office”, I would also have a chat with the Doctor.  Very low key.  Indeed the only different aspects to this particular visit were twofold …

    1.  Seeing a new and different doctor than the one I’ve been seeing for a year and a half, and …

    2.  H
aving had a 2nd bone marrow biopsy done the prior week.

So with respect to (1), Dr and I spent all of 2 minutes, “getting to know one another”.  Then the next question from him to me was, “so is there anything you’d like to discuss at this time?”, apparently ready to send me on to complete the Cycle 3 Day 1 infusion.

My response was, “well y’all did a bone marrow biopsy last week – what does that tell us?”.  

So he sez over his shoulder, as he turns to his computer, “well let me take a look”.   He does several clicks for a minute or two, then movement ceases and I can see he’s reading something, then a couple more clicks, and his head flicks side to side, as though he’s comparing two of something – presumably the results of the original pre-treatment biopsy, done back in April, which is the one that led to the diagnosis of Multiple Myeloma in the first place, against this new one from last week.

Then he doesn’t actually move at all, just turns his head, glances at me, and says … “Wow”.   Just exactly that, "Wow", and no more.

So I come back with, “Well Doctor, I think that sounds promising, but can you be just a bit more specific, I’m having a hard time interpreting Wow”. 

His response to that was, “You know the goal of the Chemo treatment, so I won’t bother going through all that.  As a “non-secretor”, you also know that the only way we can really accurately determine how effective the Chemo treatment has been, is by looking at what’s going on in your bone marrow.  So that’s what last week’s bone marrow biopsy was for.  And the response I see in the results is extremely encouraging.

Now he’s got me really revved up, so my next question is, “Just how encouraging is that, Doctor?”. 

He replies, “Well your original marrow biopsy showed about 60 percent Myeloma cancer cells, and 40 percent normal plasma cells – a ratio consistent with a very advanced state of disease.  No wonder you were experiencing such noticeable anemia symptoms.   So now that we’re halfway through the Chemo treatment, I see that the new biopsy from last week shows less than 1 percent Myeloma cells, and 99 percent normal plasma cells.  And that’s an extremely rapid and significant response to the Chemotherapy treatment.  Certainly confirms we’re doing the right thing”.

Scrape me off the ceiling, readers.  My rejoinder to that was, “Wow.”

I then went on to pose, “Sounds like our goal has already been met – I couldn’t be more tickled.  Does that mean we’re done with Chemo, and ready to move on to next steps?”

He came back, “No, while these new biopsy results are extremely good, this is just an at-this-moment finding.   A very good one, granted, but we really should complete the entire planned 4 cycles of planned Chemo treatment, then do a very exacting post-treatment workup.”

Well with what I just learned about the results of these first 9 weeks of treatment, I’m definitely up for another 7 weeks.  Bring it on.  

So with a nod and a smile, the Doctor got up and said, “then let’s continue, and I’ll see you again next month.”   And me, I proceeded to float on air, back to the infusion treatment center, to commence Cycle 3.  Feet didn't touch the ground.

That’s the end of this little dialog recap – I’ve done my best to portray this accurately, as it’s so indelibly imprinted in my memory.  Thursday July 12th is turning out to be one of the very best days of my life that I can recall.

And then it got even better. 

As I mentioned previously, while the Oral Revlimid capsules are taken every day, the Oral Dexamethasone and Infused Kyprolist drugs are administered just two days of each week, on Thursday and Friday.  And on the Thursday infusion, once hooked up, they always start by taking a blood sample, and evaluate the CBC (complete blood count) numbers from that – for a couple of reasons.  One is to decide whether the amount of Kyprolis to be infused this week should be adjusted, another is to monitor the key blood count numbers on Hemoglobin levels, and on Red Cell counts, White cell counts, and platelets.   Over the first two cycles, they had found my Hemoglobin levels had on four of those occasions dropped below the threshold level of 7.0, which is the boundary level between “Severe Anemia” and “Acute Anemia” – and when dropping into the Acute anemia level, that triggers an order for an immediate supplemental transfusion of Packed Red Blood Cells, which should bring up the Red Count and Hemoglobin levels, at least back into the Severe level.

So the one single Hemoglobin level number is the one we’ve been watching most closely on a week by week frequency.  Throughout Cycles 1 and 2, mine had hovered between highs of about 7.5, and then dropping down to around 6.5 – then get another PRBC transfusion, which would bump it back up  to 7 point something.  Which would then slide down again 2-3 weeks later below the 7.0 boundary, then top off again.  And around we've gone, again and again.   Well after getting the great news about the Bone Marrow Biopsy last week on July 12th, the CBC numbers we got back showed that during the preceding week (Cycle 2 week 4, the week off drugs), had risen, as expected – but not just into the high 7 something level, but all the way up to 9.0 ! !   More “Wow” feelings.

So this was another clear signal that the vastly decreased levels of Myeloma cancer cells, and corresponding increasing levels of normal plasma cells in my bone marrow, were kicking my system back into action.  Indeed, the Red Counts and White Counts and Platelets had also risen significantly over the preceding week as well.   All very promising signs that the Chemo treatments were doing the job – all those Measurements had risen to levels higher than they’d been last  Spring, before we began the Chemo treatment in May.  My euphoria at seeing these numbers got even better – but then the Nurse Practitioner warned me that in coming off of the Rest week from at the end of Cycle 2, what we were seeing that day would probably be a high watermark, and further cautioned now that we were beginning active drug administration again in the first week of Cycle 3, the readings next week would likely fall off somewhat.  But hopefully not back into the Acute anemia level, as we’d seen earlier.

So as we’d just passed the midpoint of the overall planned regimen of four full Chemo cycles, this past Tuesday July 17th, I had a full day follow-up appointment with the specialists at the University of Chicago, which is where we’ll hopefully do a Stem Cell transplant later.  They examined all these most recent results, including the latest CBC numbers and preceding trends, and the details of the “before” and “midpoint” bone marrow biopsies, and also confirmed that the Chemo treatment were going very well, and that we should continue to proceed through all of cycles 3 and 4.  That part of our day took only a couple of hours.  But since these findings confirmed the efficacy of the original treatment plan, now we can start looking ahead to what would come following this 4-cycle induction Chemotherapy regimen, at which time the hope is that we will have achieved close to full remission of the underlying Myeloma disease in my bone marrow. 

And that next overall step would be the Autologous Stem Cell transplant, the intent of which is to further secure that remission condition.  While quite arduous, at the completion of that Stem Cell transplant procedure and recovery therefrom, my bone marrow and blood plasma should be back to essentially normal, my CBC numbers should all be normal, and then from all outward appearances, and inward feelings, I’d be in full remission, and hopefully stay there for an extended period of time – many months and hopefully even several years.  While full remission means there is no active Myeloma cells in evidence, the underlying condition (still not that well understood) which gives rise to active Myeloma appearance is still lurking in the background.  Which is why they say this is not a true "Cure" condition.  But this overall treatment protocol, of highly targeted Chemotherapy followed by the Autologous Stem Cell Transplant, using the latest FDA approved drugs, has proven to produce remission periods much greater than those observed in the past.  Indeed Kyprolis was only approved by the FDA in 2012, and there are a large number of cases of patients undergoing such treatment who are still in full remission as much as 6 years later.  Very promising signs.

So the remainder of our visit to Univ of Chicago on Tuesday was to meet with members of the Transplant team, and look at a tentative schedule for my pre-transplant evaluations, then the Stem Cell Harvesting procedures, followed by the Stem Cell transplant itself, then finally the recovery plus rebuilding of the White Cells and immune system.   Much more on that later, but overall those procedures will be taking place in later September and into October, this fall.

Then the icing on the cake.  On Thursday this week, July 19th, was back to Northshore Oncology for the start of Cycle 3 week 2.   And lo and behold, the CBC numbers this week, following the first full week of active drug administration of Cycle 3, the CBC numbers actually did not drop from where they were the preceding week following the rest week at the end of Cycle 2, but instead had actually risen slightly even further, despite being back on the drugs.  Further signals that my systems were continuing to kick back into normal operation.

So that’s where we are today, and I could not have asked for a better “Report Card”.   With the general active physical condition I’ve been in throughout the past year (despite the increasing breathless resulting from the continually declining Hemoglobin Levels), and the support and prayers from all of you who have been following my experiences as we’ve identified the root cause of my Multiple Myeloma disease, and subsequent start of Chemotherapy treatment, looks like our collective efforts are bearing some pretty sweet fruit.  And to cap it off, the golf scores I achieved in the evening leagues I play in, this week I got the best scores I’ve seen since last year.   Couldn’t ask for anything more.  Sounds like a good name for a song, doesn’t it <g>.

Looking ahead, what we now face is to grind through the balance of Chemo cycles 3 and 4, which will take me to the end of August.  With where we are, and seeing the most recent CBC trends, what I expect to see is slight continued rises in all those counts, and feeling correspondingly better throughout the remainder of this treatment.  I’m cautiously optimistic that I’ve had my last PRBC transfusion, and that my hemoglobin level stays at or above the most recent level of 9.1 – the last time it was this good, was actually late last fall 2017, before the start of the 2017-2018 winter ski race season.

So barring any unforeseen surprises, for the next 6 weeks we’ll continue to turn the Crank on the Chemo protocol, and then when we get to that point, we’ll enter the Pre-Transplant detail evaluation phase.  That will entail lots of testing, including another post-treatment Bone Marrow Biopsy, plus lots more.   So until we get to that point, I don’t think there will be much of consequence to report back on here.  Chemotherapy continues to be the "New Normal" for me for the next 6 weeks.  But by now I'm quite used to it.

Again, I cannot tell you all how much my family and I appreciate your ongoing support and prayers – which have clearly been answered so far. 

So the next installment you will probably see here will come sometime in the first week or two of September, about another 7 weeks from now, as we shift from the conclusion of the Chemotherapy treatment phase, and into the pre-transplant evaluation phases.  Until then, it’ll be “business as usual”, throughout the remainder of the Chemo treatment.

To be continued in September …

Dave Clark.

 

Journal entry by Dave Clark

Well jumping the gun here a bit, after my last Journal update, where I said would next report back after Chemo Cycle 4 was complete. 

But have some very good news to share, now that Chemo Cycle 3 is complete.

At the bottom of this journal entry is a timeline graph of my blood Hemoglobin levels, over the past year, since last fall 2017.   That graph appears very small, but if you click on it, it will appear bigger so that you can see the details more clearly.

At the left end of that plot, a year ago, I was finding myself regularly experiencing increasing breathlessness when engaging in aggressive exercise.  Bike speed dropping, kayaking pace slowing down, even walking up a mild uphill fairway on a golf course would require me to stop periodically to catch my breath.   And this past winter’s Ski Racing season, even a quick 30 second run down a Slalom or GS race course here, at near sea level, rendered me so out of breath that it would be over a full minute before I could even talk coherently.  Clearly something was badly wrong with David by that time, but my Oncologist still hadn’t fingered what it was.  That diagnosis didn’t surface until this past April, from the Bone Marrow Biopsy done at that time – which is where I began this journal.

In 20-20 hindsight, those continually increasing breathlessness experiences were the direct result of ever-increasing Anemia – due to the normal blood plasma cells in my bone marrow being crowded out by the aggressively cancerous Myeloma cells – and resulting in much lower levels of oxygen-carrying Hemoglobin in my circulating blood.  From that personal experience, I can now assure you all that those two phenomena – ie Hemoglobin level and breathlessness – are perfectly correlated.  That’s the Statistician in me talking.

And from this trend over time, you can see those points where my Hemoglobin level dropped below the 7.0 “Critical Anemia” threshold, where I was sent directly to the hospital to receive a transfusion of Packed Red Blood Cells (PRBC).  The first of those coincidently occurred the week of my first Bone Marrow biopsy this spring – the analysis of which is what finally fingered Multiple Myeloma as the root cause of the ever-increasing Anemia.  You can see That supplemental transfusion kicked my Hemoglobin level up, and I clearly recall feeling much better for the next couple of weeks.  But that was fleeting, and within a few weeks, just as we started the Chemotherapy treatment, it was down into the “Critical” level again – back to the Hospital for another “Top me Off” transfusion.  And on through Chemo cycles 1 and 2, you can see three additional “Top me Off” transfusions, on three additional occasions.

But as reported in my last update, the mid-course 2nd Bone Marrow biopsy showed there had been a very significant drop in the level of cancerous Myeloma Cells in my bone marrow by last month, which meant that there was now room for the normal healthy Blood Plasma cells to start flourishing again.  While that internal situation hadn’t shown up yet in my blood counts as of that last Journal update, now that I’ve got the weekly blood count numbers through the end of Cycle 3 – as depicted above – we can now see that my Hemoglobin level has started to shoot up rapidly. 

While there isn’t any outwardly visible signs of that internal change, I can report that I’ve been feeling a lot peppier in these past 3-4 weeks.  And with my Hemoglobin level today being higher than it was at this time last fall, I’ve even taken the kayak out for a spin in the river a couple of times, and felt fine on both of those jaunts.  And in the evening golf league I play in, last week I decided to forego the powered golf cart and walk the 9 holes, and managed quite well.  Haven’t been able to do that in over a year.

So things are definitely looking up – the Chemotherapy is doing what it’s supposed to, and I can now see those effects in this timeline trend, and can feel it in my daily activities.  

Of course, what we’re seeing here isn’t a long-term cure.  Myeloma is a permanent condition, so while this current reversal feels great at the moment, it will take a Stem Cell transplant to hopefully stabilize me into remission.  And then will need ongoing maintenance therapies, for the rest of my life, to hold off recurrence for as long as possible.  So we’ve got a long road ahead – as another MM patient recently conveyed to me, “you think chemo was arduous, wait until you get into the Stem Cell transplant and recovery”.

But I’m entering this 4th Chemo cycle with spirits high, and feeling lots better than in a long time.

Thank you all again for your continued support and prayers – they’re working !

To be continued in September …

Dave Clark.


 

Journal entry by Dave Clark

Well the complete 16 week Chemotherapy treatment is now behind me, and this final Cycle 4 thankfully went pretty much as expected in my last journal update.  At least insofar as the treatments themselves are concerned.  But Murphy's Law is always lurking in the background, and so these past few weeks have turned out to be very different than what I had been looking forwards to, when I posted the pevious update in this journal.


Indeed, that very same week I made the past journal entry, when I was on my way to Northshore Oncology for my first Kyprolis infusion of Cycle 4 (on my bike, natch), I experienced an incident when crossing a busy intersection.   I had the green signal and the pedestrian/bike path signal also showed me I was clear to cross.  But just as I was riding into the intersection, a car from my left started up -- the driver was looking at approaching traffic coming the other way, (to his left), saw a gap, and so decided to execute a right turn on red -- and so hit the gas and turned into the intersection to his right -- while still looking to his left.   Well I was just entering the intersection to his right, and he never even looked my way at all.


A instantaneous assessment told me a collision was imminent, and that I would NOT be able to beat the turning car -- so I grabbed the brakes and attempted to turn to my left to pass behind the turning car.   While that started to slow me down, the projected travel path looked like it was gonna lead to my running into the side of that car, so I turned left even harder.   And that jammed the front wheel , which stopped the bike and then led to my executing a neat partial summersault over the handlebars, narrowly missing behind the turning car, and landing on my head and right shoulder on the pavement.


Well my head of course was well protected by my bike helmet, but the brunt of the impact was on that shoulder, which of course had no protection.   OUCH  !!!


Of course the errant car never saw me at all, and just kept on rolling.  While I was in some pain at that point, I also realized I was lying on the pavement in the middle of a busy intersection, so I jumped up and grabbed the bike and quickly backed out of the intersection.  Then dropped the bike and took a couple of minutes to assess my situation. 


No evident damage to the bike -- but could not say the same for David -- was experiencing significant pain in that right shoulder.   Well I recall having dislocated that right shoulder once, about 50 years earlier, and so my first explorations were to attempt some movements of that shoulder joint.   Which seemed to move OK in all the normal directions, and such movements did NOT result in any greater pain.   So clearly no dislocation, and if anything, those exploratory movements appeared to reduce the pain in the shoulder somewhat as well.   And I had used both hands picking up the bike and moving it out of the intersection, so clearly I hadn't compromised motor function significantly.   So after a minute or two I came to a tentative conclusion that all I had was a good strong whack, but was otherwise OK.  While I was wearing shorts and a short-sleeved shirt, I didn't notice (then) any scrapes or pain elsewhere -- just the pain in the right shoulder -- and that appeared to be waning rapidly.


So I stood the bike up, straightened the handlebars, and checked it over carefully.  No significant damage evident -- when I had turned the front wheel hard left, the bike had stopped, and then just simply fell over, while I was executing my "forward exit" summersault.


By that point the pain in my shoulder had faded significantly, so I did some more systematic movements of both arms and shoulders, and while there were some minor twinges in the right shoulder, such movements did not appear to lead to additional pain or discomfort, so I decided I was OK.  And so I got on the bike and resumed my journey -- at that point I was about 4 miles into my trip, and had another 4 miles yet to go.   So off I went.


When I arrived at the medical office complex where Northshore Oncology is located, I saw that I was significantly early for my infusion appointment, and also noticed that there was an "immediate care" facility office right there in the first floor of that building.  And since I'd experienced a couple of twinges in my right shoulder on going over bumps while I was completing the remainer of my ride, I decided I might as well drop in and have them take a look at me.   While I was signing the patient log, I discovered that i was dripping some blood on the page -- evidently had scraped that hand and it was still seeping, but I never even felt it.   So figured it was a good thing to have them clean me up and check me over more carefully.


Once they got me in, they found that one bleeding scrape and a couple of other minor areas of "Road Rash", which would only be minor problems.  But I mentioned the shoulder impact, and we noticed that movement of that shoulder was somewhat uncomfortable.   So they had me take off my shirt.  That was uncomfortable, and I could see the nurse looking back and forth between my two shoulders and then shake her head.   "Looks like you've done something", she says.   So off to X-ray.


To make a long story short, the X-ray showed that the impact had fractured the distal end of my right clavicle (collar bone), which attaches at the top of the shoulder -- right where I landed on it.   So they cleaned me up, and bandaged the couple of scrapes, and then strapped my right shoulder into an "immobilizer", and then after setting up an appointment for the next day with the local orthopedic specialists, they released me so that I could go forwards with my Kyprolis infusion upstairs.  A remarkable experience with this Immediate Care facility -- was in and out in only 40 minutes.  See picture at the bottom of this journal entry, which we took once I eventually got home later.


My most significant wonder about that whole experience is how I was able to complete the second half of my ride, with a fracture in my shoulder, without realizing how severely I'd been injured.  Evidently the bike riding posture and gravity collectively tended to press the fracture together, and some natural hormones tended to numb the injury.  Regardless, after completing the Kyprolis infusion, then I had to call Jean and explain why I needed to have her come over and pick me up, rather than ride my bike home -- riding the bike home was clearly not in the cards.


So my appointment with the Orthopedic specialists the following day brought me a whole raft of bad news.   Yes I had a fracture, and it was going to take several weeks to heal.  But there was a silver lining -- the condition of the fracture and positioning of the bones would not require any surgery to pin it, in order to heal properly.  So during that healing period, I was going to essentially lose the use of my right arm.  No golf.  No kayaking.  No bike riding.  Indeed, I was to continue to keep my right arm strapped in that "Immobilizer", 24/7, for at least a couple of weeks. 


Wunnerful, just what David needed at that point.   Just when my Hemoglobin levels were moving upward, and I was feeling peppier than I'd been all year, and looking forwards to resuming a number of physical activities that I hadn't been able to engage in since the preceding summer -- hard stop on all fronts.  About the only form of "exercise" I would be allowed is walking.  Just great.


But it is what it is, and so enough about that pivotal incident.  The remaining weeks of Chemotherapy treatment Cycle 4 have been very different than what I was anticipating, as least as far as lifestyle and physical activities are concerned.  Hello couch potato-hood.


Anyhow, this past week I have now official graduated from the planned 16 weeks of Chemotherapy, and all the tentative signs are that those treatments have accomplished what they were intended to.  Indeed, over these past 2-3 weeks, my Hemoglobin levels have been higher than they've been since early 2017.


This past week I've made two trips into the City of Chicago, to the University of Chicago Hospital complex, to visit with the stem cell transplant specialists there, and to undergo a whole raft of pre-transplant testing.  Next week we'll do yet more testing, and then also another bone marrow biopsy.  Then finally we'll meet with the transplant specialists one final time to review all of these test results, and make the final Go / No-Go decision on the anticipated transplant procedure and schedule.   That key checkpoint meeting will be in 10 days, on September 18th.


So this journal installment brings me up to date as of today.  I'm still essentially without the use of my right arm, but did acquire a used stationary exercise bike that I've set up in my bedroom, so I can at least get some regular exercise during this period of enforced activity deprivation.  I'll have a 4-week orthopedic follow-up this coming Tuesday, and hoping that they'll allow me to begin some limited use of my right arm coming out of that.  We shall see.


I expect to make my next journal entry following that September 18th "summit" meeting with the stem cell transplant team.  

Then the "real fun" {?!?) will begin ...

Dave Clark

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

Journal entry by Dave Clark

It has been a relatively quiet month here at home over the Thanksgiving holiday, with real winter weather outside, and little opportunity for exercise other than walking around the neighborhood, when it hasn't been raining or snowbound.  Had extraordinary storms and snow here in the Chicago area in late November.   But I did start sessions on my stationary bicycle the week before last, so I am getting some more aggressive cardiovascular workouts lately.

But this current week I've had a definite uptick in activity, having had review meetings with four different medical teams, in these past four days.  So let me cover what arose in all of those sessions.

Last week I spent a day at the University of Chicago hospital, and underwent another Bone Marrow Biopsy procedure, followed by a blood draw for complete lab testing, and then a nuclear PET scan from head to toe.   So this week began with a review meeting with Dr Jakubowiak, head of the Stem Cell Transplant team at Univ of Chgo.  Couldn't have hoped for better news.  The Bone Marrow Biopsy came back completely negative for Myeloma, confirming that my myeloma disease is currently in complete remission.   While this does not represent a cure (multiple myeloma is still considered an incurable condition), at this time I have no active myeloma disease evident in my bone marrow, and my blood counts are all normal or very close to that.  Hemoglobin level is higher than it's been in three years, and I'm really feeling peppier than in a very long time.   And the PET scan shows no active skeletal lesions, so I do not have any significant skeletal deterioration from the myeloma invasion that I've been suffering from over the past 3-4 years.  While they don't have enough history on patients who have undergone the specific treatment protocol I've received over these past few months -- involving drugs which were approved in 2012 and 2015 -- a large fraction of the patients involved in those trials back in 2012 are still in remission as of this year, so the prognosis for me today is much more favorable than the "official" 33 months, which is still quoted in the literature for newly-diagnosed myeloma patients.

After reviewing these results with Dr J, he endorsed my moving on to some more aggressive forms of activity, and while he said that they generally recommend that myeloma patients not ski (due to frequent skeletal weakening), that given the latest PET scan results on me, that if I proceed carefully, he would not forbid me from skiing now.  Just take it easy -- which will exclude racing for now.   Next month we will begin a regimen of "maintenance therapy", which will consist of oral chemotherapy treatment -- the same drug used in the 16 weeks of intensive chemotherapy I underwent from May through August this year, but at lower dosage.  And without the accompanying oral steroid and a related infusion cancer-killing drug.  So that should help prolong the current remission condition as long as possible.

Turns out my local ski club was having an outing at Wilmot mountain that very evening, and so once I got home I dug out the ski wear and other gear and headed up to Wilmot.   While I started out very leery on an easier run, that felt so good that after a few such turns, I went right to the main run in front of the lodge and found I was able to handle that with no problem.   Most noticeable was that at the conclusion of a run down that slope, I found myself breathing easily and able to talk, whereas the last time I skied that run, back in March of this year, just before I had been diagnosed as having myeloma, at the conclusion of a run I was completely out of breath and gasping and unable to even talk.  What a difference !!!   While my musculature is weaker from the relative inactivity over these past 2-3 months with the Stem Cell transplant and resulting inactivity, my cardiovascular capacity is ever so much better now than it was 8 months ago.  

Still, after about an hour on the hill, my quads were definitely complaining to me, so that was enough for the first day on the snow this season.  But proves that I'm now ready to start working more aggressively to get back into condition.  Yippee.

The next day i had a session with my family doctor, where we reviewed the recommended schedule for re-vaccinations that I need to go through.  As a byproduct of killing off my bone marrow and rebuilding a complete new foundation, that lost me all of the life-long vaccinations that I've had -- so we need to do those all over again, over the next 18 months or so.   Which will be done by my family doctor.  We reviewed that schedule and set up appointments for all of those shots, which will not complete until spring 2020.  But that's now wired up.

Then the next day I went to see my urologist for a review on the Prostate Cancer situation.   While I had my prostate removed in late 2013, and then subsequently underwent 7 weeks of radiation therapy in early 2016, during 2017 my PSA levels had been again rapidly rising, and my urologist was concerned and had been recommending hormone therapy by March of this year -- but the Multiple Myeloma diagnosis which arose the following month put the Prostate situation onto the back burner -- the Myeloma cancer situation became the 500 pound gorilla in April and since then.  But now that we've got the Myeloma disease into remission, the time has come to revisit what's going on with the Prostate.   Well since March, we did take PSA blood test samples in June and September and then just last week in December.   And what we find now is that the PSA levels over these past 9 months have leveled off and are relatively stable, at a level just over 0.5 -- which absent the previous rising trend, is a comfortable level.   So hoping that stability continues, this says that the prostate situation is not of major concern at this time.  We'll continue to monitor that on a quarterly basis, but we're hopeful that a stable condition has been achieved.   Couldn't have hoped for a better result on that front.

And then today I had a visit with the Orthopedic folks, to review the status of my fractured shoulder (Distal Clavicle fracture) from the bike accident back in August.  The x-ray shows that healing has progressed well, and after skiing and polling myself around the ski hill earlier this week, had no significant discomfort in either shoulder -- just the normal "after the first ski day of the season" experience.  Which is actually a good feeling -- shows I'm doing good stuff.  So I'm now discharged from oversight by the Ortho gods as well.

Now switching to another front.  Since my last journal entry, the week before Thanksgiving I received word from my employer (Sears), that in conjunction with their financial reorganization, they were undergoing a major reduction in force in the corporate organization, and that my job was being eliminated, effective immediately.  While I was at that time still on a medical disability leave of absence, what this meant was that I no longer have a job to go back to, and once the ten week severance salary continuation period ends, in late January, I will no longer be on the payroll.   So today I had a meeting with my financial advisor, and since I did not elect to retire when I turned 66 back in 2011, in the almost eight years that have elapsed since, we have managed to add enough excess income into appropriate retirement instruments, that it looks like with social security benefits plus distributions from those retirement accounts, that Jean and I will be able to continue with a comfortable modest lifestyle, without a paycheck anymore.   So in another few weeks I will be officially retired.  

Which will permit me to continue to focus on health issues, and to pursue other activities, like golf and kayaking and bicycling and skiing and who knows what else.   So this becomes a new phase for us in the lifecycle.  So glad to be getting back to a good state of health and be able to enjoy the leisure.

So while both of the two forms of cancer which I've experienced are currently under control, the near future appears to consist of relative clear sailing on the medical front.   Consequently I do not expect to be posting additional entries to this journal -- I'm going to be busy enjoying my renewed lease on life.

In closing, I must thank all of you readers who have been following this journal for your support and prayers over these last months.  Those prayers and good wishes have been answered more than I could possibly have hoped for, and I am forever grateful for your loving friendship.  I'm hopeful that we will run into one another in person over the coming months and years.

Dave Clark

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Dave’s Story

Site created on April 19, 2018

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