Scattered 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 p

I figured I would add a short health update here this evening.   I'm still waiting on some of the results from the bone marrow biopsy to come back but I think most of the results have come back at this point.  One pathology report is actually hidden from me and has been hidden from me for the past week which likely means there is something in that particular report that needs to be discussed (ie, not the best of news).  I meet with my oncologist again in three weeks, I think...  maybe in two weeks.  For some reason, the 18th of April is standing out in my mind though so it is probably in three weeks.  Naturally, until I meet with my oncologist, I will have no definitive answers.  Actually, I still may not get any definitive answers when I meet with her since we're (well, really our health professionals) still learning about this crappy illness.   That being said, there are some concerning test results that have come back since my biopsy.  Some of my numbers are worse than when

While Sheila and I were moving the wet, heavy, foot or more of snow this evening, I tripped while trying to move the snowblower in reverse and I fell right onto my right pelvis...  the site of last week's biopsy...  and the pain was so brutal that I was seeing stars and just continued to lie there in the snow where I landed.   I figured that, at that point, it was probably good to just lie there in the cold snow.  Lying on my back in the snow actually was applying pressure and ice on the site of my biopsy so I really was in no hurry to attempt to get back up on my feet.  The pain was bad enough that trying to get back up to my feet would be difficult anyway.   How I ended up in this predicament is I was blowing snow on the back side of the house cutting a clear path from the road back to our oil tank and gas tank.  This put me out of sight from Sheila who was in the driveway on the other side of the house.  After my trip and fall, I figured I would take a little break and lie there

I'm slowly but steadily recovering from my bone marrow biopsy.  It seems like the biopsy was the day before yesterday but today is the fourth day of recovery.  I've done a lot of sleeping when the pain would allow for some sleep.   I slept about 13 hours last night so that was good.  I awoke at around 5:30am but, contrary to the past few mornings, I was able to go back to sleep with no difficulty.  We got up at around 9am and Sheila did some yoga and then I made a fairly big breakfast.  So, I suppose I'm feeling well enough to do some cooking. Breakfast was good! I still have quite a bit of pain whenever I attempt to do anything.  Bending especially is painful...  sitting back against anything that puts some pressure on the site of the biopsy is even more painful...  and laying on my right side is better than it has been but at least it is possible now for short periods...  so things are improving.   At rest when nothing is touching the area of the biopsy, the pain is now a

I had no problems falling asleep last night.  I was dozing off by 8pm.  I awoke at 4:30am this morning when I tried to roll over onto my right side.  I was quickly reminded that the bone marrow biopsy was on my right side though so that woke me up suddenly.   I read in bed for a bit and then got up out of bed with Sheila when she got up for work at just before 6am.  However, I was unable to keep my eyes open by 8am and slept on the couch until just before noon (on my left side, of course).   I didn't even eat anything for breakfast because I was too exhausted to make anything.  I was originally planning to make some bacon and French toast because I was starving.  Due to a serious lack of energy, I changed my breakfast plan to just having a bagel with cream cheese.  I still didn't have the energy to make even that.  Instead, I grabbed a couple pillows from the bedroom and laid down on the couch.  I was asleep the moment my head hit the pillow and didn't get up until almost n

W hat I realized very quickly yesterday during my third bone marrow biopsy is that the brain does a great job at blocking out most of our most painful experiences.  I thought   I was accurately remembering my two previous bone marrow biopsies quite well but I was sort of fooled by my brain doing what it does best...  adapting and protecting us.   As the doctor was digging deeper and deeper into my pelvis yesterday and the pain was getting unbelievably unbearable, a lot of my memories that I had completely forgotten from my previous bone marrow biopsies came flooding back in vivid detail. Apparently, the brain adapts to pain.  I've noticed this with my extensive spinal injuries as well as my everyday bone pain caused by my primary illness.  Honestly, for the most part, I don't really notice this constant chronic pain anymore.  It just sort of simmers there in the background.  I don't even remember what it is like to be pain-free.  I'm in significant pain everyday but my

M y oncologist scheduled a few more appointments for me over the past couple of days.   I'm now scheduled to head up to the hospital on March 8th.  We'll head to the lab first for some bloodwork and then we head to Oncology for the bone marrow biopsy procedure.  I have some extra medications to take a couple of hours before the procedure too but that has already been discussed with a plan in place and medications already on hand.   A few weeks later, I have a video visit with my oncologist to discuss which direction to go with this.  She did point out, however, that if we find any serious incidental findings in the bone marrow biopsy then we would meet much sooner.  She actually mentioned that multiple times when we last spoke which is probably a hint that she suspects something else could be amiss.   My primary care doctor also set me up for a FITS Colon Screening test in late February.  That is so simple that it is not even worth mentioning.  The most problematic part of that

A fter my ambulance ride to the Emergency Department at the University of Vermont Medical Center on Friday night, my Oncologist feels it is time for some additional proactive medical treatment and even some additional tests.   My rather violent mast cell episode which included multiple episodes of anaphylaxis on Friday night and the long amount of time it is taking for my body to stabilize again is a bit concerning.  Also, considering that my blood counts have been elevating farther and farther out of normal over the past few years, it is time to take a look at my bone marrow again and run a few very specific tests in addition to the usual cell counts and cell morphology assessments.   We discussed a bunch of stuff starting with what might have triggered this life-threatening episode as well as the episode itself.  These kinds of episodes are hard to describe accurately but probably the most accurate single descriptive word I can think of is " violent ".   These unique system

I 'm lagging behind in keeping this blog updated which, for some reason, seems to be the norm for the past year or so.  Perhaps it is due to overwhelming fatigue.  Whatever the reason, here is an update to my recent oncology care blog entries I wrote in the past month or so. My overall health over the past year or two has been gradually worsening.  This rather lousy overall health has become my new normal so I'm kind of used to it now.  Plus, it changed so slowly that it was difficult to see.  Since I'm used to it now, I have been having difficulty in recognizing it as an everyday thing and a new normal.   The biggest concern and perhaps the most debilitating concern has been overwhelming fatigue.  On far too many days, I'm ready to head back to bed long before lunchtime and sometimes right after leaving the bathroom getting ready to start my day.  On these days, I have difficulty keeping my eyes open and I have no energy.  My brain wants to do things that interest me b