Scattered Thoughts . . .

S heila and I ventured up to the University of Vermont Medical Center earlier in the past week to deal with some spots and growths on my skin.  This appointment had been delayed many months because we were more focused on more severe health problems. The primary concern with my skin was a growth on my right temple (photo at right).  This had been growing steadily for about a year and then it started growing more quickly throughout this past summer.  It had quickly grown to a concerning size when it comes to cancer so I was definitely looking forward to having this growth taken care of one way or another.   I have a history of skin cancer including a fairly large basal cell carcinoma.  I also have had all sorts of stuff removed from the surface of my skin over the years.  The one basal cell carcinoma I had removed in surgery was a large growth that went deeply into the flesh so that was actually a "surgery" requiring about 27 stitches to close-up the area after removing the ca

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

I 'm still recovering from my hospital visit a week ago and I'm still feeling lousy but I am feeling just barely well enough to also be a bit bored.   This morning, I decided to pull out a small telescope, a few eyepieces and a camera to shoot a few photos through our living room window.  I needed something different to do that wouldn't wear me down completely.  I would have preferred to look at something in the sky but we very rarely see anything but clouds in the sky here between November and March so I'm stuck viewing terrestial objects rather than astronomical objects.  _________________________________________________________________ First, an update on my health...  On the positive side, I am feeling slightly better with each passing day since starting on the steroid therapy so that is good.  I am still feeling lousy though.  I'm still seesawing toward anaphylaxis with breathing difficulties occasionally and then recovering an hour or so later.  This seesawing

A lthough we didn't need to head to the hospital again last night, it was still a rather lousy night.  I felt lousy enough that wasn't sure I wouldn't be back at the hospital again. After arriving home from the hospital yesterday morning, we each ate something small.  Sheila fell asleep on the couch immediately after eating.  I fought falling asleep for a couple of hours fearing that I might slip back into severe anaphylaxis while sleeping.  I eventually got about four hours of sleep though.   We ate a bit again in the late afternoon.  I was feeling "okay"...  not great but not terrible.  I was sore from all the violent shivering the night before and exhausted from a lack of sleep and all my body went through with the multiple bouts of anaphylaxis. By early evening on Saturday, I wasn't feeling all that great again.  I was occasionally gasping for breath and I was now crampy, nauseated, and experiencing diarrhea...  all typical mast cell problems associated wi

L ast night was pretty brutal.   Sheila and I were watching a Dayton basketball game on television and I started to experience breathing problems.  I grabbed my inhaler and just assumed that a couple of uses of that would take care of the problem.  It didn't.  I used my inhaler again.  That still didn't help and my health continued to spiral downward. I was feeling slightly dizzy and lightheaded very quickly.  Then I started getting hot so I knew things were worsening and getting bad.  My health deteriorated so quickly and severely that I moved to the living room floor right in front of the Christmas tree for two reasons...  first, I was feeling like I might lose consciousness and I didn't want to fall over and hit something on the way down.  I also felt like the thing to do was to counter the anaphylaxis by raising my feet higher than my head, keeping as much blood as possible in my head.  I was hoping that between using epinephrine and raising my feet, that my body would

I had an appointment with my oncologist this afternoon.  The appointment itself was rather uneventful which was nice but a few things were discussed that concern my doctor.   I've always struggled with overwhelming fatigue with this rare illness but the past few weeks have been significantly worse and consistently worse.  I've also had some of my usual symptoms come and go during this period.  The fatigue has been the most noteworthy though and seemed to concern my oncologist more than anything else today. I would get up in the morning and head to the bathroom, as usual.  By the time I would leave the bathroom after washing and brushing my teeth, I needed to lay down again.  I would nap but when I would awaken a few hours later, I still felt like I hadn't slept at all.  The few hours a day that I would manage to be on my feet were spent bouncing from one thing to another, unable to stay focused on any one thing.  So, not only have I been struggling with overwhelming fatigue

I was notified today that my Oncologist wants to discuss something with me again on Monday.  I'm not sure what she feels the need to discuss though since we just had a long discussion and exam at the hospital just yesterday.  I hope I'm not losing another specialist requiring me to search for a new one yet again. Sheila and I discussed a few possibilities...  like prompting me to go see my Primary Care doctor about my joint issues...  or seeing an Orthopedic specialist...  or maybe some additional bloodwork...  or maybe another bone marrow biopsy...  or maybe adding another medication to my long list of medications...   Naturally, I'll be wondering about this all weekend long.   UPDATE:  Nov 1st, 2021 - As I mentioned, above, I was notified that my Oncologist wanted to do a Televideo chat today, Nov 1st.  So, I called the office this morning to find out how they wanted to connect in Zoom.  The receptionist thought it was strange that I didn't get an email with a link

S heila and I had to run to the hospital unexpectedly at the last minute the other day to visit the lab in preparation of today's scheduled visit.  I figured I would be heading to the lab after my appointment that was scheduled for today but my oncologist wanted the lab tests done beforehand.  I got a phone call from Oncology requesting I head to the hospital two days earlier than planned.  Then, this morning, we headed up to UVM Oncology again for my scheduled appointment.   My usual lab results had no changes which is good news, I suppose.  The same things that have always been wrong with my lab results indicating Systemic Mastocytosis are unchanged.  The good news part of this equation is that the numbers aren't worse. My oncologist was a bit concerned about two things...  1) She seemed shocked by how low my oxygen saturation is getting at least once every week.  She was visibly surprised hearing that my O2 levels are getting down into the 80s (%) and sometimes even lower. 

We were back at the hospital today...  back in Oncology...  and back seeing Sheila's surgical Oncologist.   On the drive up to the hospital, Sheila and I were talking about being unsure of where our emotions are at this point in her treatment.  In the beginning, it was a bit of a roller coaster ride of emotions. Then, for a long while, especially during the months of daily visits, we were definitely a bit numb.  It was like we were on auto-pilot and just going through the motions...  one step at a time.  Then we had another roller coaster ride during her last treatment stage which included an ambulance ride to the ER.  Neither one of us is quite sure about where we are at now.  I think we're just bit weary of hospital visits.   So we headed back up to Burlington today to spend some time in the Breast Care Center at UVM Medical Center... Today's visit, fortunately, was uneventful.  Sheila's imaging looks good so that is good news.  There is no swelling anymore,

For two years, we have been focused on Sheila's cancer and I sort of pushed any thoughts of my own health to the back of my mind.  Of course, when problems arose, I visited doctors and did what needed to be done to stabilize my health again but I definitely have not been pro-active in pursuing my own healthcare problems while we were handling Sheila's cancer.  There was only so much we were able to handle and, to be honest, we're both pretty sick and tired of spending so much time in hospitals but now it is my turn. So, yesterday, we headed up to the University of Vermont Medical Center and spent the entire afternoon at the hospital...  again in the Oncology department but visiting a new doctor.  My illness is classified as a myeloproliferative disorder so oncology/hematology is the place to be at this point.   Unfortunately, since we were back in oncology, we didn't even get a change in scenery!  Actually, what was really weird was that when we left our examinin

A few months ago, I wrote about Sheila and I discussing whether or not to continue Sheila's cancer treatment.  The treatment was making her daily life miserable.  Worse yet, this treatment was to continue for a total of ten years.  Ten years of absolute misery didn't seem like a very wise option to choose for someone who is supposed to be recovering from her second bout of breast cancer with lymph involvement.  After some serious complications, ER visits, and a significant deterioration in her quality of life, we both decided it was time to stop treatment.  As one would expect, Sheila's oncologist wasn't too thrilled with our choice.   The oncologist recommended some further testing to determine risk factors with and without her continued treatment and we felt this would be a good idea.  In the back of our minds, even though Sheila's quality of life absolutely sucked during treatment, we always knew we would second guess this decision to abort her treatment i