Scattered Thoughts . . .

A s I wait for my latest oncology test results, I've been doing some research about treatments and drugs that my oncologist has discussed with us in a recent visit.  I have to admit that I actually have been losing sleep over the direction my health is headed in recent years and this research isn't helping any.  If anything, I'm losing more sleep! My health has been so poor that the poor health makes it very difficult to sleep at times.  Most times, however, I can't keep my eyes open but, now, what I'm learning in my current research is keeping me up at night.   For the first five years or so that I've had this illness, I was very active in support groups and research.  I was actually a board member and had written a few lengthy papers for this national support group to help newly diagnosed patients.   In the beginning, this research helped me understand and come to terms with my future of surviving with this incurable illness.  Also, I was h...

W e had to head up to the hospital yesterday (for me) and, as always, I brought one of my cameras along in case I saw anything worth capturing.  This time I grabbed my compact Fuji X30 camera with its fixed zoom lens.   For those interested, the Fuji X30 is a small camera with classic rangefinder camera styling that was released about 12 years ago.  It has a fixed lens so there is no need for carrying extra lenses.  The disadvantage of this camera is the sensor is smaller than the sensors in my other cameras so the tonal quality isn't as nice as my other cameras.  Nevertheless, it does capture some nice images...  certainly better than any cellphone. Since I was sitting in the passenger seat of the car while we were driving on the highway, the car was moving at 65mph while I was shooting photos.  This meant I needed as high a shutter speed as I could get to avoid any motion blurring due to our speed as well as due to bumps.  Sheila's Honda Ac...

I'm adding an update at the top of this blog entry since I was notified of most of the laboratory test results shortly after writing this blog entry.  There are no big surprises so far in these test results so that is good.  We're still waiting on the results of the newest type of test that is mentioned below.  Honestly, I really don't expect any life-changing revelations to come from that test either though.  The severity and frequency of anaphylaxis that my body is enduring is a bit of a problem though. W e had to head up to Burlington a few days ago for what we thought would be a quick and uneventful visit to Oncology for me.  This is an every-six-months visit (well...  it is supposed to be every six months but the Oncology department is so busy that they are scheduling about nine months out at this point...  the soonest they could get me in for my next appointment isn't until June, 2025).  Since we're at oncology approximately three to six tim...

I had another visit to Oncology at the University of Vermont Medical Center last week.  I had been up there a couple of weeks prior for some labwork which we discussed in this most recent appointment.   In the photo at right, it appears as though the hospital is empty but we found that the hallways being seemingly dark and empty was a bit misleading.  It was about 8am and my appointment was one of the first of the day so we expected the hospital to be rather quiet.  Most of the people we saw in the hallways were hospital employees.  I'm not much of a fan of waiting in lines so seeing the hospital being so quiet was good news.  I like being able to show up, check in immediately, and then quickly get called into the examining room. When we stepped into Oncology from the quiet and empty hallway, the waiting room was filled with patients waiting to be called in for their morning chemo. On the positive side, even though my health has been miserable this yea...

F or most of this calendar year, my primary health problem has been related to breathing.  For better or worse, that seems to be changing a bit lately. Throughout this calendar year, it seemed like my mast cells were not all that active in most of my organs (which had been typical for a couple of decades) but were now active/over-active in my lungs.   In some ways, it seemed like I traded nausea, gastro-intestinal problems, abdominal pain and even kidney and liver pain for the consistent breathing difficulties I had been experiencing this year.   This change was not necessarily a good change nor a bad change.  It was just something different.   Healthy people tend to take breathing for granted but, as one might expect, even the slightest breathing difficulties affect everything .  My breathing problems this year have landed me in the hospital and I've had O2 levels in the low 80s far too often (below 95 is a problem).   All those o...

I am about due for another visit with my primary care doctor.  I saw her last month for my ongoing breathing problems that started with an ambulance ride to the hospital back in January.  My breathing was still terrible in August so she started me on a new drug and I'll be checking in with her again next week to follow-up on the effectiveness of this new drug.  When I saw her about three weeks ago, I was telling her that the worst of my horrendous gastro-intestinal problems seemed to have been traded for the breathing problems.  I was still occasionally experiencing the debilitating gastro problems about once or twice a week but the severity had lessened and the frequency had significantly lessened.  However, my breathing had become unmanageable and, if you can't breathe, you can't do anything.  I haven't been able to do much this calendar year as a result.  Far too often, I feel like a fish out of water gasping for air. On the rare day when I feel ha...

I had a medical appointment today to discuss my medications as well as some of my more bothersome current health problems especially my ongoing breathing issues.  The appointment went well, I suppose, and we added a new medication in an attempt to get my breathing issues under control.  I have another follow-up appointment in a month to see if there has been any improvement in my breathing. So, the main thing today was about my continued breathing issues.  Since my last bout of COVID, my breathing has been terrible.  I seem to be slowly...  very slowly...  improving but this has been a significant and debilitating problem for the past eight months. Consequently, I have been using my rescue inhaler two to three times every day.  My doctor would like to get this use down to no more than twice each week so I'll be starting on a corticosteroid inhaler, taken twice a day, as soon as my pharmacy can fill the prescription.   The general consensus is...

I had my post bone marrow biopsy follow-up appointment with my oncologist today.  We discussed the biopsy procedure, my lingering pain at the site of the biopsy, my lab results and my current condition in a Zoom TeleVisit (seen in photo, at right) which meant we didn't need to drive to the hospital.  The appointment was in our living room.   First we discussed how I have been feeling over the past few months.   My oncologist seemed to be a little surprised that I am still feeling quite lousy since my ambulance ride to the hospital in January and that I am still having great difficulty in doing just small things for a couple of hours.  In order for me to do something for just a couple of hours (ie, grocery shopping, dinner with the grandkids, Kenzie's figure skating, Lukey's hockey, etc) requires planning and closely managing energy.  In order to do any small thing, I need to get extra sleep beforehand and taking extra medications for a day leadin...

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....

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'...