Scattered Thoughts . . .

I haven't been writing much about my own health and Systemic Mastocytosis lately other than an occasional quick update about a bad night or lousy day here and there. Sheila's health and her breast cancer has been pushed to the forefront over the past month and a half and rightfully so. Also, I've been writing more about more pleasant things such as hobbies, home renovations and the grandkids rather than my own health. The downside of not mentioning my own health problems is that people assume that no news is good news. That line of thinking, however, is rarely correct and it is not correct this time either. For instance, we just experienced a week of weather in the 90s with high humidity and unbelievably stagnant air. Well... to be honest, this sort of weather is like being in hell for me.  My health cannot handle climates above 80 degrees... indoors, outdoors, anywhere. So, without getting into specifics, I had a rather lousy week of poor health. It got so bad this

Yesterday was a long and exhausting day which began as w e headed northward to the hospital in the morning for a relatively grueling day in Radiation Oncology. We both seemed a bit exhausted right from the get-go yesterday so we knew we were in for a fairly rough day. We managed to get the hospital visit and a few errands out of the way with little difficulty though. The appointment started with making a mold for Sheila so she could/would remain perfectly still during her radiation treatments. I wasn't allowed in the room for this so I have no photos even though this is one of the things I definitely wanted to capture in photos because it is rarely seen. Unfortunately, I was told I needed to remain in the waiting room for this part of the appointment which I found quite disappointing and a bit frustrating. This diversion in the waiting room allowed me to catch up on some reading while struggling to stay awake. In hindsight, I should have just taken a nap in the waiting room!  

We were back at the hospital today dealing with all the fun that cancer entails once again. On the positive side, I somehow managed to get an entire fairly comfortable waiting room to myself as Sheila did her thing with one of her doctors.  I think Sheila's day, overall, was good... it was a bit emotional for her... but, in the big scheme of things, it was a relatively good day.  Today, Sheila met with a new member of her medical team and this doctor is one from my own medical team.  We really do spend far too much time in hospitals... ...and, we're only just getting started this time around. Sheila and her doc as they were hunting me down... A fairly comfortable and, since I was alone the entire time, a rather private waiting room.

I put together a short video this morning for Lukey. Lukey enjoys watching train videos whenever he visits us and this video is definitely something he'd enjoy! Another reason for video of a new locomotive is that watching a video playback of anything shows flaws you might have missed in real life. This is especially true with small models and old eyes... it is much easier to see the small details on a video if the video is done correctly. So, I pulled out a camera and attempted some video. Between projects, medical appointments and periods of poor health, I'm putting together a long test track (among many other things) which will run along the wall like a shelf in the back room. This test track will allow me to work on locomotives every now and then when I have time and when I feel up to it. This test track will also provide me with a great way to program my locomotives as well. The track is 12 feet long so it is sufficiently long enough to run from end to end while sti

It is amazing what just a couple of nights of halfway decent sleep can do for one's emotional well-being! After our appointment with the Oncologist and putting that stressful waiting period behind us (awaiting test results which determine specific treatment)... and after arranging for counseling with an outstanding counselor specializing in cancer... and after arranging for insurance coverage for additional treatment to help with the side-effects of ten years of cancer treatment... Sheila managed to get a couple of nights of halfway decent sleep.   She still didn't sleep well and she is still understandably struggling with some anxiety but she managed to calm down enough to catch up on a little bit of sleep. This was enough to see a visible difference in Sheila's demeanor this morning.   That is great news! This evening we'll be making some Kansas City-style country ribs and homemade fries... That should help with both of our attitudes!

Sheila and I just arrived back home from the hospital again.  We spent much of the day at the hospital yesterday with a visit to Sheila's Oncologist and we had to go back first thing this morning for a bone density scan. We're both exhausted but I thought I would add a few updates about Sheila's treatment before taking a nap. For the past couple of weeks, we had been waiting on test results which would classify the risks of Sheila's specific cancer (in both the tumor in the breast and the lymph nodes). This classification would help us (including the medical team) make the decisions about specific treatment plans. Actually, the wait for these test results seemed like a couple of months and this unexpectedly long wait has definitely affected Sheila emotionally.  Although few people see it or realize it, all chronically ill patients go through a series of emotions which is a bit like being strapped to an emotional rollercoaster. Most times, these patients will ca

Our plan for today was to head up to Burlington to continue Sheila's cancer treatment plan. Unfortunately, late yesterday afternoon, Sheila received a call from her nurse at the Breast Care Center informing her that today's appointment with the Oncologist was canceled and rescheduled for late next week... another delay and more frustration. I have little doubt that Sheila is probably more frustrated than I am about the delay in treatment. I'm sure she doesn't like her whole treatment plan being put on hold, hanging over her head for longer than necessary, and weighing her down (and I am well aware that it is at this point in the waiting) .  We are also waiting for news about the latest test results which just happens to be the cause for this delay. Wondering about the results of this test is frustrating and causes some anxiety. Are the results going to show only a 'low risk'?  Or, are we dealing with cancer that rates as a higher risk? ...wait... wonder a

I am always on the lookout for specific model trains in online auctions. (I have a long list of trains on my wish list!) Every month or two I find a few model trains that are on my list of trains that will work for my little fictional model railroad world I have designed and plan to build.  About two weeks ago, I found an auction for a few O scale  diesel locomotives. For those whom are not familiar with model train scales, trains in O scale are  Lionel-sized trains but these particular locomotives run on 2 rails rather than 3 rails. I've been on the lookout for a couple more of these locomotives so I can have a few on hand to use for parts. These trains are no longer in production so parts either need to be custom-made or salvaged from other locomotives. Now, here were four more of these F9 diesel locomotives.  The auction was to end in a week. I saved these locomotives to my eBay Watch List but, at the time, my interest wasn't fully there. I figured I would follow the au

My health often resembles a see-saw... my health swings upward and I experience relatively good days... then swings down and I experience rather miserable days... back up... back down... sometimes it balances in the middle for a relatively short period if I managed my health effectively and luck was on my side but, more often than not, it seems to move up and down like a pendulum moves side to side. Yesterday afternoon the see-saw started moving downward... after a little bit of dinner (I didn't eat much because I was feeling poorly), I had hoped that my health had leveled out in this short period before bedtime though... no such luck... Apparently, this see-saw continued on its downward swing through the night.  I was quite sick and in the bathroom for far too much of the night when I preferred to be and needed to be sleeping. Actually, I was overwhelmingly exhausted and struggling to keep my eyes open even while I was sick as a dog.  I really hate these nights. It takes a

Systemic Mastocytosis requires a delicate balance of rest, diet and medications in order to keep my body as stable as possible. In addition to managing my medications closely, I need to effectively monitor and manage my use of energy.  If my energy gets too low, my health crashes into anaphylaxis, neurological issues and/or miserable intestinal issues. If I cut back on rest, I struggle with the same problems. If I stray from my diet... same thing. If I forget a dose of medications... same thing. After well over a decade of managing my own health, I'm pretty good at listening to what my body is telling me about my health because, if I don't, my health often will cascade out of control before I even get a chance to throw specific extra medications at the problem. Sometimes, however, things can get out of control for no known reason... today was one of those times. I had a fairly productive morning doing a few little things that are all hobby-related. This kind of stuff isn&