Scattered Thoughts . . .

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

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

T his morning, Sheila and I headed into town for an appointment with my primary care doctor.  I was feeling pretty lousy but the drive is a short one so it didn't take too much out of me.  I definitely did not want to go though.  At this point, I'm pretty sick and tired of medical problems being front and center in my life so having another medical appointment did not thrill me in the least. When my doctor came into the examining room, Sheila and I were both surprised to learn that she had already discussed my case with my oncologist before we arrived this morning!  She knew things that I had discussed with my oncologist last night and it was obvious they talked about changing some of my medications.  This sort of effective communication is great but it is also a stark reminder that my health problems are serious.   The other sign of the seriousness of my health is that my oncologist worked on my case Monday afternoon and into Monday evening.  She was still contacting me and my

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

M y body is having some difficulty recovering from this latest mast cell episode of anaphylaxis.  While I was napping this afternoon, my oncologist wrote to me advising to start on steroid therapy.  Apparently, I'll need that added to all my usual medications to help recover.   I'm not feeling well enough to write much of anything at the moment so I'll just leave this blog entry at...  we'll see how that goes...

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

W ell, the stomach virus that is one of the things running rampant through society over the past few weeks has finally found its way to our house.   All day yesterday, I had twinges of odd intestinal problems...  sudden pains...  a short lived cramp...  then I started feeling like someone had knocked the wind out of me.  Within minutes, I was in the bathroom with diarrhea.  I'd come out for a bit, then would need to get back to the bathroom.  This continued through most of the night.  Even when I was in bed, I couldn't lay down.   Honestly though, what I experienced through the night was far less severe than one of my typical Systemic Mastocytosis episodes that involves my gastrointestinal tract.  Although, when this first started, I couldn't tell if it was viral or my illness.   While I was sitting at the piano last night before attempting to lay down in bed, I started to get lightheaded like I was going to pass out.  I did some epinephrine and that problem was quickly res

A s expected, we had a great time with the kids and grandchildren here at our house for Christmas!   We celebrated on the day after Christmas Day this year.  We went back to our already established tradition of starting our day with breakfast once everyone arrived.  This year, however, it was a late breakfast.  We had an egg casserole with a French toast bread base, maple and brown sugar sausage links, bacon, and cinnamon buns.  I didn't get much food and, actually, I didn't get a single cinnamon bun but what I had was very good.  For the most part, all the food was eaten so it must have been good.   In this blog entry, I included photos from this fun day and I closed this blog entry with a video which does a better job at showing some excited grandchildren.   The house was quiet earlier in the morning before everyone arrived as Gee and I filled the living room with presents...  stacks and stacks of presents... The stacks of presents were even climbing up the walls like in a Dr

I t is Christmas morning and we started our day with some French toast.  That was pretty good.   Now I am beginning to prep for tomorrow's Christmas celebration with the kids and grandkids.  We always start with a Christmas brunch (presents afterward).  I make an egg casserole, some bacon, some home fries, sausage and Cinnamon buns.  By mid-afternoon, I expect everyone to start getting hungry again so.... Today, I started marinating a small pork loin.  This afternoon, I will sear it on the grill and then finish it up slowly in the oven this afternoon.  This pork is being prepared so we can make a few Cuban sandwiches tomorrow.  We have some ham and Swiss cheese as well so there will be a choice between ham and cheese sandwiches or Cuban sandwiches.  And, for the odd Vermonters, we always have some Cabot cheddar cheese on hand too.  Personally, I will opt for the Cuban sandwich...  the marinated slow-cooked pork, Swiss cheese, ham, mustard, sliced pickles, and finished on the griddl