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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