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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