Scattered Thoughts . . .

A s I wrote in a previous blog entry, we had cancelled our plans for this past weekend and decided to do something in Waterbury that would be far less taxing on my body.  Unfortunately, it turns out that I couldn't even do that. We previously cancelled our plans for going out of town for an annual train show.  This is a very big event that requires many miles of walking each day.  It is crowded.  It is often hot in each of the four large buildings.  I knew my health was not ready for that.  Actually, I still didn't trust my health enough to simply ride in a car for three hours to get to the show.  A few days before the event, we cancelled our plans and decided to stay home. Another concern with going out of town was there is still a good chance that I might struggle with anaphylaxis while we are on the road traveling.  Then, we would need to find a hospital very quickly.  The risk was too high so we cancelled the out of town plans.  Our grandson, Lukey, had two hockey games her

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

W e had some pretty consistent furnace problems a few days ago.  We had to call in a service technician after-hours and then he had to return with the more parts the following day.   We're still experiencing a very intermittent problem though that is causing the ignition to kick on again while running.  We have another visit scheduled as soon as possible which isn't until next Thursday.  They are scheduling a week out!   My theory is that it sounds like the burner runs out of fuel for a split second and the ignition kicks on (we hear it click on)...  then burning starts again and the ignition kicks off (we hear a dull thump and another click).  This all happens in a split second.  So, maybe there are some small scattered air bubbles getting in the line intermittently?  Or a partially sooty photocell?  Or, is it possible that the oil control ignition is faulty?  The service technician had to replace our pump along with a couple of other things but replacing the pump required ble

Yesterday, for the most part, was a better day, healthwise, than I've had in a long while.  I still did have problems at one point last night but, overall, it was my best health day since before my hospital visit.   I had another relatively short and mild episode of breathing difficulty last night.  I was cooking dinner and had some breathing issues.  I definitely can't take the heat in the kitchen!  I do need to prepare meals though so I try to minimize my health problems by leaving the kitchen while I'm cooking.  I return a couple of minutes later to check on the meal, then leave again to the living room where it is cooler.  Regardless, I still ended up having some breathing issues last night...  again. I took some extra medications again before heading the bed and I think that helped.  I didn't have any breathing problems after that.  Another plus was that the medication I took makes me drowsy so I ended up sleeping through the night.  Actually, I slept for about 11

My night through the night was quite lousy last night.  We went to bed at around 10pm but I was not sleepy just yet which, I assume, was due to all the steroids in my body at this point.  Sheila fell asleep quickly but I stayed up and read for a while. I was still needing to get up to use the bathroom every hour too.  I think this was due to all the extra antihistamines I have been taking daily for the past week as well as because of all the extra water I had been drinking throughout the day.  These short bathroom trips were clearly cutting into my sleep too. Then, at 2am, I had some minor difficulties breathing.  It resolved itself within about ten minutes but that was a sign that I clearly am still seesawing back toward anaphylaxis.  It is happening much less frequently now and the severity is much less now too but that seesawing is still occurring it seems.   It is sort of like a swinging pendulum...   Early on, this pendulum was swing quickly and swinging high toward significant pr

This evening was the last dose of my steroid therapy.  We're hoping this short term therapy will be enough to help me recover from the severe systemic mastocytosis anaphylactic episode I had last week and has been plaguing me on and off for the past week. The headaches which are perhaps the most common side effect of Prednisone started yesterday for me.  I had a headache all through the night last night and today the headache has been worse.  Needless to say, I'm glad that tonight was my last dose.   On the positive side, I am feeling a little more stable this evening.  I don't think I've had any breathing problems since last night...  so...  that would be the first 24 hour period without a seesawing back toward an anaphylactic low.  So, that is definitely good news.   I suspect the headaches will linger for a couple or few days and taper off slowly.  Headaches can be prevalent in systemic mastocytosis too but I'm hoping my headaches are due to the Prednisone since

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

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 '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

I was notified this evening that another test result was posted in my medical chart.  Compared to how bad it could be (and what I have seen in other patients), this test result isn't horrendous but it is indeed bad with a very bad trend.   For the past five years, this particular number has elevated farther and farther out of normal range.  This particular number is directly related to my mast cells which are the cells that aren't behaving normally due to my illness so this test result is a primary marker for my rare myeloproliferative disease.  My current treatment drugs are supposed to be keeping this number as close as possible to the normal range and keeping my mast cells as stable as possible so this number  should be trending in the other direction.  Instead it is elevating farther and farther from normal. This test result, by itself, is likely enough to be a concern but when we also look at the other test results that I wrote about previously showing one problem with my

U sually, my health worsens while I'm awake and, more often than not, when attempting to do things.  Any activity (ie, "doing things", raises my body core temperature and that is a significant trigger for poor health) is a major trigger for me as is straying from my long list of dietary restrictions and limits.  The temperature of my environment is also a big trigger.  Being in warm environments for more than 20 minutes or so is a problem.  Anyway, my health usually worsens during my waking hours.  Sometimes, however, for whatever reason (this is the unexplained, idiopathic part of this rare illness), poor health and sometimes even dangerously poor health is triggered while I am sleeping and the middle of the night last night was one of those nights.  Since the bedroom was only about 62° through the night, I know that a warm environment was not my trigger this time.  In this case, it seems it was simply an idiopathic triggering of poor health. I was having this dream that

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. 

Early last week was quite lousy as far as my health goes.  I was down doing absolutely nothing for three days.  As the week progressed, I started to feel a bit more like myself.  By Friday, I was feeling better than I had in recent memory.  Unfortunately, that was short lived, very short lived, as it usually is.   Feeling as good as I was, I actually did think that maybe my health was about to crash.  This is the usual thing for me.  I feel better than I have in a long while and then, usually within hours, my health suddenly plunges into anaphylaxis.  This time I felt really good through Thursday, then even better on Friday...  I must have been feeling pretty good on Saturday because I don't remember any remarkable problems.  I think I was thinking that with all the extra medications I took earlier in the week, I should be feeling better than I have in quite a while so I sort of pushed this old pattern out of my thoughts.   I'm still hobbling around with my knee injury.  Even t

T he weather has been horrendous anyway but my health has really slowed down any sort of chance of being productive over the past week and a half or so.  I think the rainy, damp, wet weather may be playing into the amount of pain I'm in all day long so I suppose it does have some bearing on my health.   My main issue is pain...  joint pain, bone pain, spinal pain.  My sprained left ankle (since January) has worsened in this damp weather so I'm limping a bit due to that.  My right knee is still a problem even though it is better than it was a month ago.  The pain in these two joints alone is enough to keep me up through the night.  I also have nagging, relentless bone pain.  My extensive spinal injuries are always worse in periods of damp, wet weather too so my spinal pain has been worse lately as well.   The pain wears me down and causes sleep issues so then there is overwhelming fatigue added into the mix as well.  I just want to sleep.  Well...  I suppose I really want to sle

I've been feeling rather lousy for the past week or more so it was not much of a surprise when I quickly realized this morning that today wasn't going to be much better.  For the most part, I've been extremely fatigued and inexplicably weak over the past week.  My usual bone, joint and spinal pain has been far worse as well.  I have pain all day every day but far too often this pain dips into severely debilitating levels.  This is where my health has been lately.   I've also been feeling "not right".  Sometimes I just can't put my finger on what is wrong.  All I know is I don't feel right.  I think this is usually due to multiple symptoms spiraling down into the debilitating levels but no single symptom seems to stand out.  Regardless of why I feel this way, I have been feeling this way lately.  Late this morning, I began having some difficulty breathing.  No red flags were waving in my head though because this is a common occurrence in warm environmen

It has been warm the past two days and today is looking to be a beautiful, sunny, warm spring day too.  I had planned to utilize the good weather to start working on things outside where sawdust is not an issue.  This week is looking good for that and I have a bunch of small projects that need to be accomplished.  Actually, I've been waiting months to be able to pull out woodworking tools to accomplish a few things. Unfortunately, once again, my health is being a bit uncooperative.   My ankle is still healing.  Sheila and I wandered outside yesterday to take down wreaths and Christmas lights.  I stepped up on the first step of a stepladder and quickly realized my ankle was still in no condition for climbing a short stepladder.  I instantly fell off and onto unlevel snow on the ground.  This hurt both of my ankles again setting me back a couple of days.  I have no need for my cane now but getting around is still a bit painful and slow-going.  I'm taking small steps and taking th

This is just a quick blog entry to write about some recent lousy health.   Since most people assume all is well when they hear nothing about health issues, I try to remember to write about some of these issues every now and then because all is not well with my health.  This is one of those times. Thinking back, this started with some mast cell issues for a week or two after we met some friends for dinner.  Quite often, just an afternoon and early evening out on the town can severely impact my health for a few weeks.   Then I had some significant spinal issues after removing some snow from around the house and the roof.  Actually, I am still trying to recover from the spinal inflammation and pain. Now I'm dealing with an annoying cold.  Unfortunately, a cold agitates and angers my already over-active mast cells which compounds and prolongs the cold and brings on all sorts of other debilitating symptoms.  A cold also makes my breathing issues worse and I've had a lot of brea

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