Scattered Thoughts . . .

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

I'm having difficulty finding words and thinking clearly this morning so I'll keep this blog entry relatively short.   Back a few weeks ago, Sheila and I headed down to Northfield to meet with some good friends who now live in another state.  They were in town for a family event and, fortunately, had a couple of hours to squeeze in a lunch with us.  Naturally, we wished we had far more time with them but we understand how hectic a family visit can be.  We don't see them nearly often enough so it was great to connect with them for lunch. No matter where we go, I always take at least one camera with me.  The weather was beautiful on this autumn day so I shot a few photos from the passenger side of our car while Sheila drove.  I haven't had the energy to wander around solely for the purpose of landscape photography so this is my mode of operation for this type of thing lately...  no tripod, handheld camera, in a fast moving car (or train).   The telltale sign of being in a

I 've really fallen very far behind in writing blog entries and sharing photos lately due to really lousy health for much of this year.  Well, actually, I've fallen behind due to lousy health through much of the pandemic!  I've honestly lost track of how many times I've had the virus at this point.   Frustratingly inaccurate COVID tests have also clouded my memory of how many times I've actually been very sick.  You need to test about six times before you get a positive result which pretty much renders the tests useless.  While people are testing negative (IF they even have enough of a moral compass to test at all), they are going to work and socializing and spreading the virus even more.  This pandemic has become a bit of a blur of illness, death and nothingness so I honestly can no longer remember how and when I've been sick.  This period from January 2020 to today has been a blur of nothingness.  What I do know for sure is that I've been down far more mon

A s I mentioned in a previous blog entry, I had another appointment with my oncologist the other day.  This morning we took a trip up to the hospital to run some tests. The other day, my oncologist and I discussed my current health, obviously, as well as some new treatments that have very recently been FDA approved for my rare illness.  These are the first two approved treatments specifically for my rare illness.  I spent some time over the past two days researching these treatments and discussing them with Sheila. First, let me start by saying that I'm fairly confident that my health is not  at a point where I think either of these drugs should be necessary.  My oncologist is simply trying to help improve my daily life.  She also wants to ensure that we aren't putting my health on the back burner instead of quickly jumping on treating something that is treatable but could quickly become life-threatening if left untreated.   One of the newly approved drugs to treat my rare illn

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

Sheila did too much lifting and playing with a toddler on Saturday and has had serious back problems since then.  Actually, her back has gotten worse with each passing day since Saturday.  This morning was the worst it has ever been. I came out of the bedroom at 6:30 this morning to find Sheila lying on the living room floor in the dark.  If she hadn't spoken up in the dark to warn me that she was on the floor, I would have tripped over her, landed on her, and likely made her condition even worse.  That certainly wouldn't have helped either one of us! Apparently, she had previously made it to the bathroom, in pain, but trying to sit on the toilet put her back into an intensely painful spasm.  She managed to slowly, over the course of the next half hour, crawl her way back to the living room where I found her. At this point, Sheila couldn't get to the bathroom nor anywhere else.  When I helped her to carefully and excruciatingly make her way back to the bathroom, just sittin

One of the days while Adam and Joi were visiting us was spent in the backyard just socializing.  Liza, Whitney and the grandkids were also there to spend some time with Adam and Joi.  Even Judy and her son, Jamie, surprised us by visiting after hearing that Adam was in town! We haven't spent any time with Judy since before the pandemic so it was nice to spend some time with her on this day.  She and Jamie stayed for dinner with all of us.  I always make more food than is necessary so last minute extra guests never cause a plating shortage.  We were very happy to have them share this day with us... As the sun set behind the trees and the sailboat, it started getting a little chilly in the autumn evening air so we built a small fire to keep everyone warm and cozy... The kids always gravitate toward the sailboat and the playhouse.  Actually, we now have a putting green that also captures Lukey's attention.  If I remember correctly, Lukey spent some time with Ace on the putting gre

W hile Adam and Joi were visiting us, we did quite a bit of sightseeing and eating out.  That was a really nice change after spending much of three years in the house during the worst periods of the pandemic.  Of course, we're all still vulnerable to the virus and we still develop the virus every now and then but, after being vaccinated and boosted many times, the severity of the virus seems to be far less than before we were vaccinated and boosted.  That has certainly been the case for us.   _________________________________________________________________ Ironically, as I write this blog entry, we have the virus running through the family yet again.  Whitney's household is testing positive which is very bad news since our granddaughter in that household has cystic fibrosis so is considered very high risk.  Today, Lukey (in Liza's household) tested positive and is feeling a bit lousy too.  We're hoping that everyone recovers quickly and unremarkably and, of course, we&

While Adam and Joi were visiting us the week before the holiday weekend, we headed up to Burlington for a very nice cruise on Lake Champlain.   We do one cruise every summer and had already done one cruise back in June with Lukey and Kenzie but this sightseeing cruise is always a nice time so doing a second cruise this summer received no objections from either one of us.   Actually, we jumped at the chance to do a cruise with Adam and Joi.   Adam hasn't been here for a visit in quite a few years and he is now married to Joi so it was nice to see both of them again.  We met Joi during our cross-country trip on Amtrak a few years ago.  That was a great trip and we enjoyed our time with the two of them while getting to know Joi a little better.  Now they were visiting Vermont...  just before a holiday weekend...  at the peak of foliage season...  which made for a very busy tourist season in our neck of the woods.  Every place we visited was very crowded with tourists.   Since it was a