Today -- October 4, 2020 -- marks the 2nd anniversary of my "rebirth", the date on which I received the healthy stem cells that had been harvested from me. following my chemotherapy treatments over the summer of 2018.

It has now been over a year and a half since I posted my last caring bridge journal entry, and so I think this is a great time to post an update and tell you all what has transpired with me over those months.  No shocking surprises coming -- have been doing extremely well and hope to continue that way.  But want to share some of my experiences over these past months.

In that last journal entry, I had just been given the green light to resume more aggressive physical activities as of December 2018, and that week had gone skiing for the first time in that 2018-2019 winter season.

So downhill skiing was the focus of my outdoor activities for that winter season, and I wound up skiing something like 20 days over the next three or so months, going out once or perhaps twice a week, when conditions were favorable.  Gaining strength and rebuilding my musculature each time out, and finding that a most enjoyable and fulfilling endeavor.  By the end of season I was able to comfortably ski for most of a full day and enjoyed myself immensely.

Then once April rolled around and skiing was no longer on the agenda, was able to break out the bicycle and use that as my primary form of local transportation, for Doctor visits and other local travel, putting in something like 50 miles or more each week.  And also resumed occasional kayak excursions on sunny days here on the Fox River, typically doing somewhere between 6 and 12 miles on each jaunt, which are great whole-body workouts.  Then when the daytime temps got into the 60's and warmer, I broke out the golf clubs and started with 9 hole rounds -- walking instead of riding in a cart, since exercise was a large part of the goal -- and then full 18 hole rounds within a couple of weeks.  That was so enjoyable that I wound up joining three different golf leagues -- taking advantage of my new status as a retiree <g>

As a result of all of that exercise, my weight gradually dropped into the 160's over the course of the summer, as my physical fitness improved.  Could really enjoy more aggressive physical activities of longer duration.  Over the course of the summer my periodic visits with the Oncology folks showed my blood counts continuing to improve, with Hemoglobin levels into the normal range for the first times in over three years.  Was great to engage in more aggressive kayak or bike jaunts, without experiencing breathlessness at all.

One side issue materialized when I began golfing in the spring of 2019.  Noticed that I had a hard time tracking my Drives off the tee, as well as on longer fairway shots.  I should mention that before I began the chemotherapy regimen in spring 2018, one of the recommendations was to get thorough eye and dental checkups, and have any outstanding issues with eyes or teeth rectified before beginning the chemo treatments.  Teeth were OK, and when I had my eyes checked, the Ophthalmologist mentioned that she could see the faint beginnings of cataract formation, " ... I expect in about ten years or so we'll be talking about cataract surgery, but that's a long way down the road," she sez.

Well in May 2019 I went back to the Ophthalmologist to get my eyes checked.  After all the measurements and inspection etc, the first thing she sez is, "When does your driver's license expire?".  I checked it and replied, "not until next February -- why do you ask?"  Her response was, "That's helpful -- because you wouldn't pass the eye exam today -- you have extensive cataracts in both eyes."  Seems that the strong steroids that were part of the chemo treatment promote the development of cataracts, and so in less than a year I had gone from "faint beginnings" to "almost legally blind", in both eyes !!

So I underwent cataract surgery shortly thereafter, left eye in mid-June, and right eye in early July.  Then within a few weeks after the second one, got updated glasses, and found myself able to see clearly again -- could follow my shots on the golf course again.  And discovered how much brighter and clearer everything looked -- vibrant colors were back, so much better than the somewhat muddy appearance everything had taken over the preceding year.  Came on slowly and so hadn't noticed any change in that regard -- but when corrected, BOY what a difference it made !!

By late fall of 2019 the temps were dropping and I started looking forwards to ski season again.  But without a regular paycheck, recognized that travel and lift ticket costs are fairly expensive, and wondered about the advisability of getting a season pass at Wilmot Mountain, the closest local ski area which is less than 30 miles away from home.  A good friend said to me, "well you're now retired and so have lots of free time -- and Wilmot needs lots of seasonal part-time help -- why not look into getting a part time job there?  Lots of folks do so, as a means to a free season pass"  Hmm-mm-mmm.   So looked into that, and discovered that their Ski Tubing hill is only open weekday evenings from 4 to 9 --so a part time job somewhere on the Tubing hill would keep me free for my still occasional weekday Doctor appointments,  and also give me a good reason to get out regularly and ski some daytimes -- then stick around for an evening shift on the Tubing Hill.  And while the pay is pretty slim compared to what I used to make professionally, the free Vail Epic season pass (Vail Corp bought Wilmot 5 years ago) was a big draw.

So long story short I spent last winter as a part-time Tubing Hill conveyor operator at Wilmot, and skied there regularly 2-3 days every week.  Aside from one 50-year-old Mom, I was the only Tubing worker over the age range of 16-24 -- most of the workers there are high school or local College students.  So Dave became "just another one of the Kids" on the tubing hill staff -- since Age is more a state of mind than of body, I fit right in <g>  So that kept my ski legs in great shape over the 2019-2020 winter season.

As the regular ski season in the southern Wisconsin area was coming to a close by March, I vividly recall one Saturday in late March, after Wilmot had closed, when the weather forecast for Wausau Wisconsin looked idyllic for skiing -- Sunny with low 30 temps and minimal wind forecast -- so I hopped into the car and left home in the dark at 4:30 AM and drove four hours up to the Granite Peak ski area, and was on the hill there as the lifts started spinning at 9:00 AM.    It was absolutely gorgeous skiing, I only took one 25 minute break to grab a sandwich for lunch, then went right back outside.  Wound riding up on the very last chair at 5:00 PM, and the TraceSnow app on my phone reported that I'd done 62 runs totalling over 35,000 vertical feet.  Which is more than most folks do on a ski day out in Colorado.  And for me, what was the most remarkable aspect was that I felt just as strong and peppy on that last run down as I had on the first one 8 hours earlier.  At that date I was in the best physical condition for skiing than I'd been in decades.  Was really looking forwards to a planned three-week trip to Colorado for the next three weeks, to take advantage of my Vail Epic pass.

Well as we all know, that planned Colorado trip was not to be, due to the Covid-19 shutdown.  Sigh.

But as we got into April and the weather here was warming up, I was able to get the bike and kayak out -- both activities lending themselves to safe social distancing and hence allowed -- and so was able to get lots of exercise in the spring of 2020 and keep active and fit through those days.  By that time my weight was down below 160 pounds -- lower than I'd been in decades.

While the golf courses were still shut down through April due to the Pandemic mandates, beginning in May they came up with rules for safe conduct playing Golf, and so I was able to begin Golfing on May 1.  And that has become my primary passion over the summer of 2020.  I wound up participating in four different local Golf Leagues this season, and as of this week the Chgo Dist Golf Assn stats show that I've logged 106 full 18-hole rounds of golf so far this summer.  And all but one of those was walking, only had one super hot and humid day when I broke down and took a golf cart instead of walking.  So lots of healthy exercise walking the golf course -- about 3 days out of every four, all summer long -- plus regular bike rides for various local transportation (something like 50-60 miles every week), as well as occasional jaunts in the river in the Kayak -- all those activities have kept me at my high-school graduation weight level between 150 and 155 pounds. 

Fitness-wise, I've been in the best shape this summer of 2020 than I have in decades.  And with my Multiple Myeloma still in complete remission at this time, I'm fully enjoying better health and fitness than I've experienced in many years.

So what exactly is my status today, in terms of this incurable chronic disease, Multiple Myeloma?  Well when I was finally diagnosed as suffering from MM in spring 2018 -- when I would experience significant breathlessness attempting to do anything more than a slow walk across the room -- I found that the medical literature reported that the median survival period for a newly diagnosed MM patient was about 33 months -- but that the disease was treatable, and remission for a period of months and possibly even for a few years was possible ... IF ...

What the doctors told me in April 2018 was that we should begin a regimen of aggressive chemotherapy, with a goal of possibly achieving at least a partial remission condition -- which could result, IF ...

·         IF I was able to tolerate the treatment, and

·         IF the treatment produced a "response", and

·         IF such a response to treatment was sufficiently effective,

THEN, we would undergo an "Autologous Stem Cell Transplant" -- a procedure of essentially killing and then rebuilding my bone marrow, with stem cells harvested from me following that chemotherapy regimen -- and hopefully that procedure would leave me in a state of remission.  That would not be a permanent "Cure", mind you, but instead a period of time where I had little or no significant active Myeloma disease evident in my body.  An eventual recurrence or relapse is considered inevitable, but depending on how effective the preceding treatment had been, such remission is a condition where the patient is relatively healthy, and able to carry out a relatively normal lifestyle for some period of time.   But as of this time in the year 2020, there is not considered to be a true "Cure".

So where am I today, you (and I) ask? 

Well as of my last Journal entry, written in December 2018, I had come out from the Stem Cell Transplant in good condition, had a bone marrow biopsy at that time which came back negative for active myeloma cells, and was about to begin a "maintenance" treatment of oral Revlimid -- which was one of the primary drugs that were part of the chemotherapy regimen I underwent over the summer of 2018 -- but at a dosage level only 40 percent as strong, and without the Kyprolis infusions, and also without any steroids.  Since I had not experienced any significantly negative side-effects from the Revlimid during that original chemo treatment, it was hoped that I would be able to tolerate the 40 percent dosage level for a more extended period, which hopefully would help hold off a recurrence for a longer period of time.

In terms of monitoring my condition, another bone marrow biopsy was done in February of 2019, about two months after beginning the Revlimid maintenance treatment regimen, and that showed that I was tolerating the treatment well, and that there was no significant sign of active myeloma disease at that time.  Since that time, I've undergone monthly blood tests, and my hemoglobin levels have continued to be normal through the ensuing 12 months.  Which has been promising.  Then they did another bone marrow biopsy one year later, in February of 2020 -- which also came back negative.  Further promising finding.  A couple of months later (May 2020), Doctor Derman told me that for patients like me, where post-transplant patients who had been on maintenance therapy for 12 or more months, they were now recommending that "MRD Analysis" be performed.  That's short for "Measurable Residual Disease" evaluation.  Which is where a larger bone marrow biopsy sample is taken, and detailed examination is done on at least one million plasma cells, and they determine what the frequency of diseased Myeloma cells is found in that larger sample.  That is then a very good indicator of the state of a patient's disease.  Then along with the result of some new Genetic Analysis, those combined findings are very good indicators of what the future prognosis for any given MM patient would look like.

In July I heard back from Dr Derman that the MRD analysis on my biopsy sample was carried out on 3.3 million plasma cells, and that Not One diseased myeloma cell was detected. This "MRD-Negative" finding is the best of all possible outcomes.  Indeed, coupled with the absence of any high-risk factors in the genetic analysis they also performed, Dr Derman says that my relatively rare situation today is about as close as it's possible to get to "Cured" of Multiple Myeloma -- although they do not yet use that term.  While only a small fraction of post-transplant MM patients evaluate as MRD-Negative, there are several thousand others like me at this time.  And since long exposure to Revlimid does have some known negative side effects,  analysis of cases of people like me who were taken off Revlimid due to such side effects found that recurrence in such folks did not appear to be any more frequent than for others who continued with Revlimid maintenance, they have decided to embark on a clinical trial for large numbers of such folks, to discontinue Revlimid maintenance entirely, and to simply monitor these people relative to others who would choose to continue that treatment.   Since those enlisted in this clinical trial will be closely monitored in a number of ways, should any of us in the trial group experience a recurrence of myeloma symptoms, they will of course be immediately put into the best then-current relapse treatment protocols, which it would hope to lead to another remission outcome.  So for me it seems like little downside, so I gladly accepted their offer and am glad to become a part of this important clinical trial.

So for now, my objective is to enjoy my current state of good health to the fullest, and to give continued thanks for having been given this gift.  To all of you who have been following my journey, and offering your thoughts and prayers along the way, I extend my everlasting gratitude.  And in addition, the fervent wish that each of you be fortunate enough to experience an excellent state of health -- the best of all possible gifts, IMHO.

Dave Clark

To be continued from time to time, as circumstances warrant.