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

 

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