Journal

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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Journal entry by Dave Clark

These past two weeks have, fortunately, been much less eventful than the first week following my discharge from the hospital.  Have strictly been following Doctor's orders in all things, and taking all of the various prescriptions they've put me on.

The C Diff infection has cleared up, and so we've discontinued the antibiotic prescribed for that.   And the Thrush infection in my throat and mouth has likewise abated, so we've also stopped the "Swish and Swallow" regimen prescribed for that problem.   And it's now been over two weeks since my last nausea experience, and so they've had me quit the compazine anti-nausea prescription as well.  Except for a couple of recent rainy days, have been going for regular daily walks -- with a mask on -- of extended distances, over a mile.  So getting some regular exercise.

This past weekend I passed the 30-day post-transplant milestone, which added two significant changes in my lifestyle.   Most significantly, I CAN NOW DRIVE myself again !!   And, all of my blood counts have improved to the point where I no longer need to wear a mask to walk outdoors anymore.  In highly concentrated environments, yes, but otherwise no longer need a mask to leave the house.

However, the one negative is that apparently I have not been hydrating sufficiently, and so they've still got me doing IV fluids at home every day.  We're now keeping track of fluid intake, and if I can absorb higher levels of fluids daily, then next week we'll be able to discontinue the IV Fluids at home, and can then take out the "Central Line" (Tunnel Veinous Catheter) that I've had in place now for the past five weeks.   Then I'll be completely untethered, and able to shower more easily and so on.

So we're at a transition phase now.  Certainly not ready to return to work yet.  And with respect to other more physical activities, the team tells me that Golf and Cycling and Kayaking and Skiing are all on the "No-No" list, for at least the next 3 months.  So while I'm definitely doing better than I was two weeks ago, I've still got a long road of recovery ahead of me.  Looks like this ski season I'll be sitting on the sidelines for a change.  Sigh.  But may get in some late-season activity come February-March.   We shall see.

Upcoming milestones ahead will be another Bone Marrow Biopsy in 4 weeks, along with another PET scan.  Those two procedures will give us a more accurate reading on what's going on in my rebuilding bone marrow.  And if those signs are all good, then soon thereafter we'll be able to begin re-vaccinations for all of the protections lost with the transplant.

So unless something unexpected arises, for the next 4 weeks I'll simply be continuing my at-home recovery, and will plan to check back in after we get the results of those upcoming bone marrow biopsy and PET scan procedures.

Thank you all again for your continued support and prayers and good wishes.  It's helping a lot, and I can see and feel improvements every week now.

To be continued ...

Dave Clark

Journal entry by Dave Clark

There goes another week.  But while had been hoping for uneventful once home, wound up with anything but.

Started thusly -- on arrival home, it was  such a lovely afternoon, and when the garage door went up, the first thing I noticed was my bike sitting there.  So despite protestation from wife Jean, I decided to go for at least a short bike ride.  How could that hurt?

Seemingly, nothing.  Did five miles around the nearby park, then decided that was enough for the first day home.  Then on return home, after stowing the bike in the garage, saw that there was a good sized pile of boxes of stuff that Jean and Jayme had cleared out as part of their "home sterilization" efforts, that they had been slaving over while I was in the hospital.  So I dragged some of those boxes out to the curb, since the next day was our weekly trash pickup day.

Then I settled in at home, fixed myself some soup for dinner, and then Jean and I went to work organizing all of the medications I came home with.  We had several new ones, as well as a few which I'd been taking regularly already.  So they  had already given us a detailed recap, identifying each drug into one of several categories.  New ones, existing ones to continue to take, existing ones to take either in a different dosage or a differing schedule, and finally some existing ones to no longer take.  Organized those into a 7-day columns by 4 times a day rows pill dosage container that Jean had found at the local pharmacy.  For somebody who 6 months ago had no regular prescriptions at all, how far we have come.   That exercise took at least a couple of hours, and so when done, took the meds indicated for that time, and then settled down for a nap

A couple of hours later, woke up from the nap with rather intense pain in my right shoulder, accompanied by severe nausea.  Apparently my Do-it-Yourself soup didn't agree with me, and so shortly that got vomited up.  Then while I was sitting up, Jean noticed that the right side of my neck was significantly swollen and tender.  Since the pain and swelling were both on the "Let us know" list, I took a selfie and then attempted to get that information to the stem cell team at the Univ of Chgo Hospital.  Unfortunately at 1:00 AM, wasn't able to connect with anybody on my list of contacts, and didn't remember the number where I was supposed to be able to reach the on-call contact on the team.

So we spent a very uncomfortable hour, with the swollen neck and painful shoulder bothering me greatly.  While Ibuprofen has always been my anti-inflammatory of choice,  we saw it listed on the "Stop taking this drug" list, and so tried tylenol instead, but that didn't appear to have any affects.  At the end of that hour, I finally decided to take 3 ibuprofen anyways, since nothing else we had tried appeared to help.   Within a half hour the pain abated significantly, and finally about 2:00 AM i managed to fall asleep.

After a seemingly endless night of fitful sleep and periodic bouts of nausea, finally daytime hours arrived and I finally managed to connect with the out-patient coordinator on the Stem Cell care team.  Despite the swelling having abated significantly, there was a largish bruise developing on my neck and shoulder, and after looking at both the 2 AM selfie and a current one, Rebecca said that they'd want to have some more concise diagnostics done as soon as possible.  At that time of morning rush hour, it would take 2 hours or more for me to get to the U of C hospital, so Rebecca advised us to head for the ER at the nearby local hospital, and then gave the ER team there suggestions for blood counts and a CT scan of the neck and shoulder.

By the time all that got done, it was late into the day, and the CT scan showed that somehow I had developed a fresh fracture of right posterior rib #4 -- the same area where I'd had the original shoulder and rib fractures from the bike incident about 7 weeks back.  No idea how it had occurred, but the CT info was clear.  Despite the swelling being well down, and the pain completely abated, they decided to transport me downtown to the U of C Hosp for at least an ultrasound and possibly other diagnostics.

By the time I got downtown and through the ER portal and eventually upstairs to the Stem Cell unit, it was past midnight, so they just got me settled down and meds up to date and then tried to get some sleep.  Eventually thursday night went past, and Friday morning the attending physician and crew arrived for Friday morning rounds, and we had a good chat.  After looking at the pix from the previous day and a brief examination, they asked me to recap events.  As I was going through my recitation of how things had unfolded, when I got to the part about arrival home and the bike ride, Laura the Nurse Practitioner cut me off and exclaimed, " ... You did WHAT ?!?".   I explained it was simply an uneventful 5 mile ride around the park and then home.

Laura looked at the attending physician, then back at me, then stated, "in the 22 years I've been working with stem cell transplant patients, since 1996, I've never had a freshly-discharged patient decide to go for a Bike Ride as their first step on arrival home.  Plus then dragging out the trash when you  got back from the bike ride.  Despite those being normally low impact activities, in your condition at this time, neither should be on your to-do list.   Not at all".

While the rest of my recitation didn't surface any additional goofs on my part, we didn't find any clear cut immediate indications of where the fresh shoulder fracture or the neck swelling may have come from.  So they ordered some ultra-sound tests, and told me that those would take most of the day Friday, and so they'd keep me at least into Saturday.  We'd huddle again Saturday morning and review those additional diagnostic findings.

By later in the day Friday it had been over 24 hours since I'd had anything to eat, and so what we tried then didn't stay down either.  So they put me on more aggressive anti-nausea meds, and somehow got through the evening and overnight.  Including the regular 4  AM  blood draw.

So at Saturday rounds we reviewed the new information, and they decided that since my blood counts had risen significantly, and there were no other negative signals from the Ultra-sound exams, that they'd release me home that afternoon, as soon as they got some added meds ordered and delivered.

But I was sternly lectured by Laura first.  "Despite how you may feel at this point, your body is still in a very delicate condition after all you've been through in this transplant treatment.  Think of yourself as being a very delicate feather, which needs to be handled with the utmost caution and care.  So.  No bike riding.  Not even a stationary bike.  No Golf.  No Kayaking.  Skiing?  Hell no.  At most, slow walks around the block is the very most aggressive exercise we would want you to attempt, for at least the next three months.  Got it??"

"Yes'm, I get it.  No way do I want to go through what these past 3 days had been like, again.  So I'm a feather.  That's my new mantra."  And I mean it.

Then a couple of hours later I'm in an Uber heading home on  Saturday afternoon.  Settled in at home and following orders to the letter this time. 

Three days later, on Tuesday Oct 22, courtesy again to good neighbor Cindy, the three of us are back at the Univ of Chgo Hematology / Oncology clinic for my first official out-patient followup appointment.  The labwork shows that my blood count numbers are improving significantly.  But on reflection I can see that while those numbers look better than they had been after the end of my Chemo treatments last month, nonetheless I DO feel pretty fragile and delicate, and nowhere in a position to do aggressive things.  This is gonna take lots more time to really recover.

Meanwhile we've finally connected with the Advocate Visiting Nurse who's been assigned to me, and have begun at-home IV fluid administration daily, which will help put some things into better balance.  And while not totally gone, the nausea episodes are less frequent and less severe.  Unfortunately I've also now dealing with Thrush, an oral infection which takes several daily "Swish and swallow" treatments of some really foul-tasting fluid.  But that's what it'll take to kill off this particular bug.

And on top of that, also have a minor case of something called C Diff, which produces diarrhea.  And yet one more prescription to combat this one.  I swear if you shake me you'll hear all of the pills inside me rattle.  But these will hopefully do their respective jobs, and then we can start dropping these as they become no longer necessary, as the conditions they are designed to combat abate.

Got another huge shout-out, to my wife Jean and her daughter Jayme, who spent most of the two weeks I was in the hospital "Sterilizing the nest" -- ie our house.   Jayme came down from southeast Minnesota, and together with Jean and crews from 1800-GotJunk, and Servicemaster, and Merry Maids, this team essentially stripped the suite of rooms I'll be occupying to the walls, then cleaned everything from floor to ceiling, then organized dressers and closets with all cleanly washed clothes and other essentials.  A  huge undertaking ... but necessary given my immuno-suppressed condition.   Later in the process we'll have to undergo rebuilding all of the immunities and vaccinations I've lost in this process, before I'll be anywhere near where I was last year, immunity-wise.  I love you guys all day and all night for the extra effort you've undertaken on my behalf.  Hugs and Kisses forever.

Next Tuesday Oct 29th will have our next out-patient followup back at the Univ of Chgo Clinics.  Hoping that will show continued improvement in my blood counts, as well as further abatement in the Thrush and C Diff symptoms. 

Meanwhile we continue to search for foods which my system will tolerate and which my palate can accept.  The effects of the strong chemo drugs involved in this transplant process have significantly affected how many things taste -- King's bread dinner rolls have always been one of my favorites, but now I find they taste sour and/or rancid.  Same for any bread or baked goods.  Goodbye Burgerse.   Rats.  Gonna take time, they tell me.  And I find anything with tomato chunks -- like deep dish pizza, and hearty tomato soup (another old favorite) -- my system won't accept, and which gets handed back to me within a few hours of consumption.

Well that pretty much brings me up to date as of today.  I'll continue to add periodic updates, as time permits.

To be continued ...

Dave (Feather) Clark

 

Journal entry by Dave Clark

Well another week has gone by since my last update.  Nothing of great importance to report during that period, just gradual decline in the nausea and vomiting, through a mild diarrhea phase that only lasted about 2 days.  That diarrhea part nowhere as bad as what the literature led me to believe.  But the nausea and vomiting had been significantly worse than I'd expected, and persisted for a significantly longer period of time.

Now to the more significant indicators -- blood counts.  While all of those had held up pretty well through the first week, by Day +7 (Thu Oct 11) all of those counts -- White Cells, Platelets, Red Cells, and Hemoglobin -- all were dropping like a rock.  So they began transfusions of Platelets, and of Packed Red Blood Cells, and daily injections of Neupogen -- the latter being the same drug used to stimulate Stem Cell production, which we'd done for 5 days just before we did the harvesting, now 3 weeks back.  Except now the Neupogen dosage is half of what we did to stimulate for the harvesting.  Even with those treatments, for  the next couple of days, from Thu Day +7 through Sun Day +10, we continued to see the numbers dropping off.  To be expected, and other than feeling mild fatigue, no other side-effects of consequence.  Just waiting to "Turn the corner", and start seeing those counts start going in the other direction.

At this point I need to offer a Super Loud shout off to our Neighbor Cindy Hoppe.  Jean doesn't drive the interstate roads, and from our home in Algonquin (45 miles northwest of downtown Chicago) the interstate highways are the only way to get around into the city.  So this past Sunday Oct 14 (day +10) Cindy offered to drive Jean down to the University of Chicago Medical Center for a visit, and bring along another Wendy's frosty.  The visit with the two of them was most enjoyable.  And the frosty didn't hurt a bit, either <g>.

"Daily Rounds" -- Monday Oct 15th, Day +11.  Every day here in the Hospital, the arrival of the Attending Physician and their team, is the time to recap my status and counts and treatments, and expectations for the next day.  Well this morning the crew all arrived wearing big grins.  "Looks like you've Turned the corner over the weekend", they said.  White cell counts as the key example, Saturday had been 0.1, Sunday jumped to 0.3, and this morning Monday skyrocketed to 1.5 -- and the Platelets and Red counts also turned the corner and were on the rise as well.

"So, if this trend continues over the next two days, we'll likely cut you loose and send you home on Wednesday afternoon".  Unexpected music to my ears.  Didn't expect things to shift that significantly and turn that fast.  But looks like those harvested Stem Cells have made themselves at home in my bone marrow, and now were busily restoring all of those blood products in my system.

"So now we'll want to have a meeting tomorrow (Tuesday), with you and your at-home caregiver (Jean), to go over what we'll need to have ready for you at home, and medications, and suchlike".  Cindy to the rescue again -- She drove Jean downtown again late Tue morning, and then sat in on our meeting with the discharge planning team.  Lots of logistics and details.  But all the pieces falling into place.

So here we are on Wednesday morning Oct 17 (Day+13) -- I've packed all my stuff, have met with the Pharmacy folks and have six different medications that I'll now be taking at home every day.  Then when Jean and Cindy get here shortly, we'll have a final Discharge Summit meeting to tie all those pieces together, and then head for home.

The continued thoughts and prayers from all of those following my journey through this website, have definitely played a major role in where things stand today.  I can't thank you all enough for that support.  And I will provide another update in the next day or two, once we settle in back at home sweet home.

To be continued ...

Dave Clark

Journal entry by Dave Clark

Well it's taken me a bit more time to get back to this journal than planned, since my last entry two weeks back.  Here's a quick recap on what's transpired since ...

Monday October 1 -- Arrive at University of Chicago Hospital, "Center for Care and DIscovery" in the mid-afternoon.  Have a "Tunnel Veinous Catheter" installed (inserted).  This is a major largish tube, which is inserted just below my right clavicle, and then goes up and across under my skin, and then inserts into a major vein which goes down into my chest from there.  What with all drugs to be inserted into me, and blood samples to be taken out of me, this puppy will serve all those purposes and remove the need to so many needle sticks in the coming days.  A mixed blessing, but worth the effort.  Only minor discomfort -- the sedative used left me without a care in the world for the rest of the day.  Settled into my inpatient room on the 10the floor, overlooking Lake Michigan from Hyde Park here in Chicago.  Magnificent  view.

Tuesday October 2nd -- First major step.  At 2:00 PM they start me chewing ice chips, to chill the lining of my mouth.  Then at 2:30 PM they administer the dose of what I call the "Chemo-Whammy", a drug called Malphalan (sp?), which will essentially kill off whatever occupies my bone marrow spaces.  And unavoidably, also denude much of the linimg of my GI tract, which will subsequently likely lead to, " ... a sigificant amount of internal discomfort and distress ...", sayeth the literature.  During the administration of this drug, and for the following six full hours, I will continue to chew on ice chips and popsicles and anything similarly cold, to keep the lining of my mouth cold so as to prevent the development of mouth sores.  Now there's a six and a half hour experience I don't care to have to repeat any time soon.   But seems to have accomplished the desires result, here a week later I don't  have any mouth sores.

About 9 PM I finally got something to eat.  Found my mouth was so numb that I'd bitten the insides of my lips and cheeks in several places.  Oh well.  Food tasted good.

Wednesday Ocbober 3rd, 2:30 AM -- the vomiting begins.  Accompanied by shakes and chills.  The next 18 hours were pretty much of a blur, with attempts using various drugs to bring the incessant nausea under control so that I could at least get some sleep.  By very early Thursday morning they finally found a combination of anti-nausea drugs that kept the vomiting mostly at bay, and I was able to get some sporadic sleep through the morning hours of Thursday.  No food intake whatsoever during this period.  Whatever I tried, came right back up.

Thursday October 4th, 10:37 AM CDT -- "Happy Re-Birthday to Me, Happy Re-Birthday to Me, Happy Re-Birthday Dear David, Happy Re-Birthday to Me".   My original appearance on this earth was at 5:56 AM CST on Saturday February 3rd, 1945.  And my Re-Birth took place at 10:37 AM CDT on Thursday October 4h, 2018.  That's the date and time that the stem cells harvested from me the preceding week were re-introduced into my system, where they are now merrily working to re-build my bone marrow contents to that they should be.   But there's a long road between that re-introduction, and eventual arrival at a stable situation where I can conduct a normal life.

The Stem Cell Re-Introduction process was pretty much of an anti-climax.  No noticeable side effects, and only took about 15 mins.  But inasmuch as I was still dealiing with bouts of queasiness and occasional vomiting, for the next day and a half my focus was predominately on when the the next ant-nausea meds would be coming, and trying to get some fitful rest between those bouts.

Saturday October 6th, Afternoon -- My daughter Evvie and her husband Jeff Dropped by for a visit -- and arrived with -- a Wendy's Large Frostie !!!  Ambrosia in a large cup with a spoon.   What heaven that was.  It all went down smooth and comfortably, and didn't even hint that it might wanna come back up again.  At the conclusion of that visit (and of the Frostie),  was definitely ready for a comfortable snooze.   The high spot of the day, beyond a doubt. 

Before and after that outstanding highlight, continued dealing with periodic bouts of queasiness and occasional light vomiting.  However, one bright spot -- the diarrhea they've all warned me to expect, hadn't shown up yet.  Fingers crossed it stays away, or only treads lightly.

Sunday October 7th, Afternoon -- Evvie and Jeff dropped by again, and this time in addition to another Wendy's Large Frostie, they also brought an entire Portillo's Chocolate Cake.   For those of you outside the Greater Chicago Metropolitan area, describing Portillo's Chocolate Cake is going to be impossible.  Rich but light, Fluffy but creamy -- not the least bit heavy at all.   Went down with the Frostie like there was no tomorrow.   Of course the majority went to the nursing staff here, but they insisted I have a good sized piece.  Yes I was in Heaven Sunday afternoon.   Another highlight of the weekend.

Still having occasional bouts with queasiness and a couple of light vomiting episodes, but quickly brought under control with anti-nausea meds.  Again slept a large part of the day and night away. 

Monday October 8th -- At morning rounds today the Dr's tell me that my White counts and Platelet counts are now clearly dropping, which is an expected trend.  Pleasingly, my Red Counts and Hemoglobin levels are holding up, so it looks like I'll be able to get through this stem cell transplant recovery without needing Packed Red blood cells transfusions, as I did during the early stages of Chemotherapy back in May/June.  That's good news.  GI tract activity is better than expected, with little sign of diarrhea yet.  Really hoping we can skate past that part.  Found that Uber-Eats can deliver a McDonalds Large Chocolate Shake right here to the hospital for me.  Closest thing to a Wendy's Frostie available, and went down just as good. 

Another highlight today -- I TOOK A SHOWER !!!  then dressed in real clothes, instead of the double undignified hospital gowns I'd had on the preceding week.  Feeling a bit more like a human being, after all that.

The past 3 days, after taking some of the anti-nausea meds, I've felt good enough to get up and walk the halls of the unit, have been logging between a half and three quarters of a mile each day, which gets me up and about and breathing a bit more heavily, which is all to the good.

 

Tuesday October 9th -- Today I stretched myself a bit and ordered a McDonalds Cheeseburger in addition to another Large Chocolate Shake from Uber-Eats, and found that combination went down well too.  White counts continuing to drop, so today they started me on some injections which should stimulate white cell production.  No negative side effects thereof, so far.

Still taking the various anti-nausea meds, as permitted.  Which keeps me sleeping a lot of the time.  Great way to pass to time, not much else to do around here except rest and heal, at this stage.

Well that about brings us up to date.  I'm roughly at the halfway point of the recovery process, currently at day +6 from my official ReBirthday last Thursday.

As an aside, when I packed up to spend these 2 weeks of so here in the hospital, I brought along framed pictures of some of my favorite action shots from Golfing and Kayaking and Water Skiing and Snow Ski Racing, and have set those up along the windows ledge here in my room.  Get interesting comments from the doctors and nurses and others who pass through my room every day, and also serve to remind my why I'm going through all this, so that I'll be back in shape to enjoy those activities again soon.  Also reminds me of the large numbers of friends out there with which I've enjoyed participating in those activties, and who are following this CaringBridge journal.  I think of you all often, and know that your continued love and support are helping sustain me through these trials.  I helps, a lot.   Thank you all.

Dave Clark

Journal entry by Dave Clark

Well the second day of stem cell harvesting went about the same as the first.  The really big difference being, that this second time around, I knew what was coming, and hence was much better prepared for each step in the process.  

I have to give great credit to Joann and Michelle -- two of the most caring and patient ladies I have ever encountered.  These gals have taken me through these two days of travel over uncharted waters, with gentle good humor and patience and of course complete expertise.  

The "Out" needle which is placed in one arm, HAS to be inserted into a large vein located at the inside of the elbow.  Which is a big long steel needle.  And consequently that arm and elbow joint MUST remain immobile for the entire procedure.  But the other arm -- where the somewhat less intrusive smaller needle goes, today they were able to get that into a vein in my upper arm, above the elbow joint, and consequently today that permitted some movement in that arm. 

What a treat that was, to be able to scratch my nose, or eat a cookie, or take a swallow of apple juice without outside assistance.  But not many swallows, as that would lead to problematic consequences.  As I'd discovered the previous day -- I'll spare you the gory details, and just say I've not a shred of dignity left.  LOL

I'm not any kind of an addict of daytime TV fare.  So what is one to do with oneself for six solid hours of being strapped down like that?   Well since the stem cell collection process requires almost constant monitoring and adjustments to the machine and levels of fluid additives and so on, Michelle spent almost the entire day with me, and we got to know one another quite well.  Great conversation, which kept my mind off the various indignities being inflicted upon me.

I reported to the Aphaeresis clinic at 7:30 in the morning, and walked out at 3:30 in the afternoon.  That's a pretty full day.  So an Uber to the downtown Chicago Metra station, and then the 45 mile commuter train ride back home.  Great to be back on familiar turf, after more than two full days on the University of Chicago campus in Hyde Park.

Overall, a very interesting and enlightening adventure over these two days -- but one that I'm certainly not eager to repeat, anytime soon.  While there were no major side effects resulting from the various drugs I was given for this process, I finished very tired and with blotches here and there all over me.  And my arms look pretty battle-scarred.  And, and despite having eaten very little, apparently somehow gained almost 10 pounds since I left home Monday afternoon.  Guessing mebbe that's fluid retention.  I'm pretty puffy all over -- found my non-expanding watchband was very uncomfortable, so put my watch in my pocket instead to go home.

Now I've got four gloriously drug-free days ahead of me, to recover from these last six days of Stem Cell harvesting.  Then next Monday it's back to the University of Chicago Hospital downtown again, for the main event itself. 

While my intention over these past few days was to focus on PT for my recovering shoulder fracture, in retrospect I find that my attention has been completely overtaken by to this stem cell harvest.  So back to the local PT clinic this afternoon, for more "Pain and Torture".

Thank you to all the followers here for your continued prayers and support.  So far we're doing pretty good, and hoping that trend continues in the coming weeks.

Will pick up this narrative early next week.

Dave Clark

Journal entry by Dave Clark

Well quite a bit since my last entry.  

I'm finding that Stem Cell Harvesting is quite different from other kinds of harvesting.  Right.  This one you get to do lying down.  But first you get a couple of really different drugs.  Which come with lots of pages of warning about side effects and ugly "Can Happen" stuff.  

So since last Friday, each morning I've had the pleasure (?) of injecting myself with a drug called Neupogen.  Which arrived last week, in a package of 12 pre-loaded syringes.  Just the thing for somebody like me with a needle phobia.  In all my years on this earth, not once have I ever seen a needle pierce my skin.  Whenever somebody arrives in my presence with a syringe, I look the other way and shut my eyes and hope it doesn't hurt too bad.  You cannot imagine the horror I felt when I read through the part where they told me I get to inject myself.  Wunnerful.  Now I get to do this -- twice -- each morning since last Friday.

Well last Friday I managed to do it the first time -- after more than an hour of trembling and so on.  Turned out to be not so very horrible, after all.  I lived through it.  Twice.  And then again on Saturday morning.  And Sunday morning.  And yesterday morning.  And then again this morning.  

Well the world doesn't have to worry about my ever becoming a drug addict -- I'm still deathly afraid of needles.  But I realize that in order to get a stem cell transplant, I first have to supply those stem cells.  And to do that requires that I Kick the internal stem cell production mechanics in my bone marrow into overdrive, with this Neupogen.  So I pulled up my big boy pants and did it.  But hope I never have to do this again.

Fortunately, I did not experience any of the potential side effects that were described in the literature.  Except they didn't list "terror at having to do self-injections" in that literature.  I guess that's obvious and goes without saying <g>

Anyhow, after the successful conclusion of four days of Neupogen self-injections, yesterday evening I presented myself to the outpatient stem cell clinic at the University of Chicago Hospital, to get an injection of another drug, Mozibil, which will stimulate that bumper crop of Stem Cells now crowding my bone marrow, into circulating into my bloodstream.  That injection came with another list of warnings and potential side effects.  So they kept me there for about an hour, to see if I exhibited any major side effects.  Fortunately not, so they let me return to my lodging and I then had a quiet evening, without further ado.  

And then this morning it was back to the Hospital again, to begin the harvest.  Essentially, they stick a needle into each arm.  BIG needles.  Wunnerful.  One for output, and the other for input.  Then they hook those two lines up to a machine.  My blood then comes of one arm, circulates through a machine, and it collects the stem cells, and then returns everything else to the other arm.  Sounds easy.  So just lie there and let the machine do it's thing.  And don't bend either arm lest you disturb the needles therein.

Sounds like a piece of cake.  "How long do we stay hooked up like this?"  He asks.  ?WHAT??  For SIX Fricking Hours ???"   Didja ever try to lie still for six hours, without bending either elbow?  My nose itches.  Sorry stay still.  About the longest six hours I've ever experienced.  But after what seemed like an eternity, they finally said, "Well we're done -- let's see what our harvest has collected."

Well it turns out we only got about half what they need for next week's transplant, so I'm going to have the pleasure of doing this all over again tomorrow.  Wunnerful.

So now sitting here waiting for another Mozibil injection this evening, and looking forwards (?) to repeating the entire exercise again tomorrow.   Sigh.

But many others have gone through this same experience and lived to tell about it, so I guess I can too.  I suppose in a few weeks I'll look back on this experience as just one more step in the long journey.  Maybe <g>

Enough for today.

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

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

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 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.
Dave’s Story

Site created on April 19, 2018

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