Lessons Learned

Last two Monday’s doctor appointments brought solid blood results and two weeks of weight gain.  Food is finally sounding good to him.  Platelets are finally increasing nicely – first up to 69k then today a whopping124k with 50k being a major mile marker in the road to recovery.  For those new to medical “benchmarks”, the normal range for platelets is 150,000-400,000.  While battling Essential Thrombocythemia, he was on high doses of hydroxyurea to keep his platelets from going up near 1 million.  One big clue in solving the mystery of his illness progression was that his platelets began to drop.  While the doctor thought this was from the high doses of hydroxyurea over an extended period, it was actually the transition of the disease to Myelofibrosis.  It was the reports of the enlarged spleen that cracked the code and sent us to Mayo Clinic with a pretty good idea of what was wrong. 

The role of platelets is to bind blood cells together and enable clotting.  Right after the chemo, his platelets were as low as 5,000.  With platelets under 50,000 any injury or even minor cuts or bleeding of any sort is a concern.  While in the hospital he regularly received platelets but the body was using them up as fast as he was receiving them.  Finally, they began “sticking” – literally, and we saw slow improvement.   It took a while for the insurance to approve the n-plate shots as they claimed they weren’t approved for Scott’s situation but once he started getting them it didn’t take long to start seeing the results. 

Another important measurement is his hemoglobin.  Monday showed him at 8.4.  Still below the normal range of 13.5 – 17.0; but much improved.  This was another early indicator of problems.  Low hemoglobin zaps you of your energy.  Levels of less than 7 will get you a blood transfusion.  In Scott’s case, we are guessing about 30 of them so far.  We are really hoping that October 17th marked the last two units.  In my younger days I was a regular blood donor, but I got away from it when it seemed to be such a hassle to fit it into my busy schedule.  I think I need to get back in the swing of it now that Scott has done his part in denting the O Negative stockpiles. 

My non-medical mind has to wonder, if the body holds 10 pints of blood, and he has gotten three times that, what roll do the stem cells play when it would seem that all that has been flushed out already.  Being that the procedure has moved from bone marrow to stem cell transplants, what will be the next improvement to the process?   While some people can escape cancer for a while by removing the affected area, blood cancer can be removed with a complete fluid flush of sorts. Crazy to think about.  

Back in the days of discovery and disbelief; I found that educating myself helped.   I read and read and searched and searched.  I created a spreadsheet with multiple tabs.  I would say “if” you find yourself in a similar situation but as I learned we are all living in a world where it’s just a matter of when and not if cancer will hit your household.  Having a cheat sheet on the blood markers was very helpful while we were in the hospital and even now. I would encourage you to keep a date log as you will need it; either for filing for disability or submitting claims to additional insurances.  The challenge of wanting to be fully informed is that your patient may not want to be that informed.  I had read early on that for the patient, less is best.  Unless they are asking for the information, sometimes it’s just best to keep it to yourself.  It helps you be prepared for doctor’s appointments, but your patient will likely need to hear it from the experts.

Two years ago at Taquamenon Falls State Park

With his numbers being much safer, he convinced me to move us home.  Promising me he wouldn’t do anything that would lead us to need to rush to the hospital for any reason.  So, after being retired from my full-time job for nearly three months already, I finally had a couple days last week where I actually felt retired.  I managed an afternoon outing with a friend and a couple store shopping trips without feeling rushed.  I wasted more time than I would like to admit playing games on my phone.  You know, to keep my mind sharp; at least that’s what the advertisements say.  My days of leisure were short lived; I’m short staffed at the store for the next couple weeks so I will be working there most days.  Thankfully not 8-hour shifts.   Not to mention that there’s still appointments in Ann Arbor on Mondays.  Making sure we have all the meds he needs, working on social security disability and fighting with AFLAC; all duties of my new full-time job.  Along with being parole officer to a 62-year-old newborn.

He is so happy to be home and everyone is offering their support and congratulations.  Yet honestly, now that we find ourselves on the backside of this situation, I’m not sure that it will necessarily be the easier side of things.  I’m afraid that keeping him safe and out of trouble was a lot easier when we were living at the hospital or in one of our “safe” houses near the hospital.  After feeling horrible for basically a year now, he is starting to get over his post-transplant cold/mono and feeling like doing things.  He is supposed to be on restrictions.  With low platelets, any trip and fall injury could end up being a life-threatening situation but it’s going to be hard to keep a good man down.  

The stem cell transplant manual is pretty clear about the risks.  It’s a full year of limitations.  No gardening or lawn mowing.  No swimming and limited sun with lots of suntan lotion.  Limited exposure to pets or small children.  No driving until your doctor gives the green light.  The rule about not leaving your patient alone for more than 20 minutes makes more sense now that he is feeling good.  Given 20 minutes alone, Scott has already managed to break a multitude of rules.  These next few months will be challenging as the last few; a matter of picking my battles.  Knowing that he will want to keep busy, but trying to keep him from doing things on the list of prohibited activities.  Realizing that it will be up and down as he works his way through the A,B,C’s of new allergies, bacteria and cold viruses. 

For Scott, going from being a farmer working seven days a week to total inactivity in less than a year was a major shock to both of us.  Then finally feeling better but still not having the strength and stamina that he has always had is frustrating for him.  Knowing that our activities will be limited for an entire trip around the sun is disheartening.  We will try to keep in mind that the months of excruciating pain are behind him and there is promise for a number of amazing adventures in our future.  Hoping that one day we can say that this wake-up call was what we needed to change our lifestyle to one that includes a lot less work and a lot more play.  Life is too short to work seven days a week; especially at our age. 

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