Oncology Additional Thoughts

As usual, through the night, I remembered more things about yesterday's oncology appointment that I forgot to mention in my previous blog entry so I should add them here in another blog entry before I forget these points again.  

When we were discussing the gene mutation that was found, my oncologist said something along the lines of "I don't think we need to do another bone marrow biopsy right now...  I think we can wait until next year's biopsy".  

This comment leads me to believe that she was contemplating doing another bone marrow biopsy right away.  Uggg...  I would not have liked that option.  I'm still reeling and recovering from this biopsy performed last month.  It is still fresh enough in my mind to be a bit traumatic whenever I think about it.  In the end and on the positive side, she felt there is no pressing need to repeat the biopsy right away.  

Then she continued this thought by referencing 'next year's biopsy' implying that these painful biopsies are now going to be done annually, at a minimum, depending upon what is found.  Implying this is going to be an annual thing now is likely due to the fact that some not-so-good things were found but that there still is no conclusive diagnostic criteria met for a known treatment plan for a specific myeloproliferative disorder.  My results could still go in a number of different directions each with its own treatment plan while other findings have no known treatment plan.  It is always good to start treatment as early as possible for the best prognosis but you must know definitely which form of disease you are treating.  Right now, we don't know which lousy path my developing cells are choosing so we wait and see in subsequent bone marrow biopsies.  

Common sense dictates that we shouldn't ignore some changes found in my bone marrow just so we can put off painful annual biopsies.  What if something indicating conclusive evidence of a more aggressive disease pops up and we skipped an annual bone marrow biopsy?  Then treatment gets delayed.  Delayed treatment in these sorts of things usually results in a poor prognosis.  This is why mammograms and colonoscopies are recommended annually yet those people who get the annual recommendation are completely healthy.  I am not healthy and I do have some previous findings of significant concern.  So, really, pushing bone marrow biopsies in my condition with my current findings to an annual schedule is really stretching the schedule to the maximum.  I have to admit that I'm not liking the idea of annual bone marrow biopsies nevermind the possibility of a higher frequency!  Uggg.

Repeating this invasive and painful test annually is tough to bear but, on the other hand, I don't want to unnecessarily delay jumping into known treatment plans if something does worsen and pop up in the next biopsy.    

Another thing I realized through the night while lying in bed is related to the gene mutation that was found.  

I was so focused on a different specific gene mutation that I would have missed this particular gene mutation they had found in this latest bone marrow biopsy.  This finding is one of the findings that sort of distracted me and threw me off my game.  I lost my train of thought and all questions I might have had just flew right out of my head even though I knew not to allow that to happen.  I've been down this road many times before so I know to always try to stay as clinical as possible in these visits.  If you get personal and emotional, you miss things.  

In this case, I was expecting my oncologist to zig and she zagged...  then when she continued explaining things, I expected her to zag and she zigged!  At that point I didn't even know what to ask.  Our conversation lost its clinical detachment while suddenly becoming personal.  The clinical side of me just got blindsided a bit and I let my emotions distract me enough to lose my train of thought.

After I regrouped in my mind a bit, I did ask if this gene mutation was strictly related to systemic mastocytosis or whether it was related to all myeloproliferative disorders.  She did respond that it was related to systemic mastocytosis and other leukemias but didn't get specific.  She just listened and gave me time to regroup.  In hindsight, I think she knew I was processing this info so she didn't want to hit me with too much information.  This was the one pathology report that I could not access in my online chart so I immediately realized why that report had been hidden from me.  While I was thinking about all of this, I missed some of what my oncologist had said before she stopped talking to wait for me to regroup.

Since I knew that this one pathology report was still hidden from me I suspected it must include some information that needed to be explained.  The problem is I was expecting a different chunk of information than what I had just received.  The information I was expecting was information I had some familiarity with due to two decades of dealing with my incurable illness.  The information I received, however, was quite different and something I had never even heard of before this moment.    

I'm still processing everything that was discussed and the more I process this information, the more I realize my mind drifted occasionally causing me to miss some things.  Sheila was sitting beside me taking notes so that was good.  Also, I think I can replay our Zoom TeleVisit if I really need to hear it all again.  That is one of the good things about the TeleVisits.

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Okay, I just checked to see if I could replay yesterday's TeleVisit and I cannot.  I would need to hit "record" when the meeting started if I wanted to replay it later.  Unfortunately, I didn't even realize this feature was available so I cannot replay yesterday's TeleVisit.  I'll be recording them in the future though. 

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I am on a six month follow-up schedule with my oncologist now rather than an annual visit.  This includes some blood labwork too.  Changing my schedule to a six month schedule rather than the annual schedule speaks volumes as well.  It is often these little things that aren't discussed that are often the most telling things.  That being said, a six month schedule is better than a three month schedule.  

I think that, right now, my oncologist feels like seeing a pulmonologist for possible Long-COVID lung damage is the priority.  I don't see getting in to see a new specialist happening before the holidays though.  Every new specialist I have had required about six months to get in for that first appointment.  Six more grueling months of difficulty breathing...  uggg...  by then, I hope to see any potential COVID issues resolved on their own!  Maybe...  just maybe...  they'll get me in much, much more quickly.

If my daily life was the same as it was a few months ago, then I don't think these new biopsy findings would matter much to me.  Well, they are serious enough to bother me a bit but I would just keep on doing what I was doing in managing my symptoms.  Unfortunately, my daily life is now significantly worse over the past few months though.  We have been cancelling plans, even very small plans, every week since January because my health has been terrible.  I've been unable to do much outside the house since Christmas.  And, actually, I'm not doing much inside the house either!

Clinically, I feel like I am just surviving and spending most of my time in bed and on the couch. I guess the good news is that my lab results are showing why I am feeling like I am just surviving rather than living but, unfortunately, there has been little that can be done to improve my daily life.  

I should point out that I'm not just sleeping in bed and then moving to the couch.  I am attempting to do anything my health will allow on any given day.  Sometimes that means attempting to spend time at the piano.  Sometimes it means working on photography gear.  Sometimes it means attempting a little bit of my daily physical therapy.  Sometimes it means fixing something small in the house.  Even on the best of days, I never last more than a few minutes to one or two short hours before I am pumping extra medications and down on the couch.  In the big scheme of things, this is doing pretty much next to nothing.  

My oncologist said she'd like to get me back to where my health was before Christmas so I could do some more enjoyable things again (actually, she mentioned being able to do things with the grandkids) but, realistically, I'm well aware that this is still an incurable illness.  This new year seems like every little tiny thing I attempt to do for fun (or to maintain the house) sets me back a few steps which takes away the little bit of fun I had in doing that little tiny thing.  Then the consequences make me want to avoid attempting these enjoyable things again.  

We are going to try something new though.  We're going to venture into the uncharted waters of extra high doses of mast cell stabilizers in an attempt to cut down on the mast cell degranulation I am experiencing lately.  My oncologist is hoping this might allow me to do some enjoyable things every now and then again.  We'll see how that goes.  

One thing is certain though.  This new year, so far, has been absolutely miserable.