Scattered Thoughts . . .

Unfortunately, Sheila's health has been deteriorating more and more each day since beginning her radiation treatment last week. It actually has been pretty frightening watching this happen! The primary reason for this deteriorating health is that she picked up a cold right when treatment began and her overall health has been spiraling downward ever since.  Sleeping has been difficult for her for a number of reasons mostly related to her cancer treatments and surgeries starting 11 years ago so she is now getting worn down to dangerous levels. This second fight with cancer has only exasperated the problem.  She is also dealing with a weakened immune system now because she has started radiation treatment. About a week ago, she added a nasty cold into the mix which includes her radiation-induced weakened immune system and the result is that her declining health has quickly become out of control. Her Radiation Oncologist noticed this declining health in our visit to her yeste

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.

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

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&

After our followup appointment with the surgeon on Friday, suddenly, we found ourselves with a three day holiday weekend, no plans, and a cleared schedule for a week or two as we wait on further test results.  After a few weeks of hospital visits, surgery, and bad news and even worse news it was nice to have a little breather. As you could probably imagine, under these circumstances, we both wanted to get away for a bit.  Sheila wasn't in much of a mood for socializing so a weekend for us alone was what she really wanted and needed. I think there has been too much focus on conversations of cancer and treatment over the past three weeks and Sheila needed a break... and some rest... and some sleep...  generally speaking, she needed some quiet time and a change of scenery. Friday afternoon, we searched online for a hotel room for the long holiday weekend... as we expected, we had waited too long to book a hotel room on a holiday weekend. We even talked about the option of some t

Friday, we were back at the hospital again for a followup with the surgeon.  Sheila's recovery from her surgery a week prior to this appointment has been relatively uneventful for which we are both very thankful. I definitely want to point out that Sheila's surgeon has done an outstanding job on this partial mastectomy as well as the biopsy and in effectively managing a slightly different and perhaps slightly creative protocol to avoid Sheila's history of problems stemming from anesthesia. In previous surgeries, Sheila has had significant problems with anesthesia and this new surgeon and anesthesiologist really came through in finding a solution to Sheila's rather unique problems.  Additionally,  Sheila's incisions are healing nicely and she is getting more and more comfortable each day. In our appointment on Friday, the surgeon cleared Sheila to begin doing more physically demanding things again as she feels up to it. Naturally, this is good news. 

For the past two or three weeks (it seems like two or three months, actually), Sheila and I have been completely immersed in cancer stuff with little time nor energy for much else.  We've definitely eaten out significantly more often because we simply have had no time to cook on far too many days. All of our attention and all of our energy has been actively and acutely focused on doing everything possible to get beyond Sheila's cancer.  Yesterday morning, Sheila was a bit too emotional for driving to work nevermind working through the day so, instead of driving to work while trying to see through a wall of tears, she called work and arranged to have the day off to regroup. The dreaded thought and knowledge of lymph involvement and metastatizing of her breast cancer was a bit too overwhelming so we called a timeout from everything and we spent the day together doing "normal" things for a change. I took Sheila out to lunch and, for the most part, we talked abou

After showering this morning, I came back to the bedroom to find Sheila propped up in bed and reading.  Considering the circumstances, it seems she is feeling quite well but not well enough to be frustrated by the inactivity. I'm not sure boredom has stepped in yet either because she is probably still catching up on much needed rest and sleep.  What I have noticed and understand all too well is her careful search and selection of different positions in order to find some comfort and less pain. Right now she is taking her first shower since before the surgery so I expect her pain to increase after this little bit of activity and pressure. Any movement, so far, has been quite painful and she is still moving quite slowly. As I mentioned in previous blog entries, the area where the surgeon removed a few lymph nodes hurts the most and this still holds true this morning.  All in all, however, I think she is doing quite well considering the past week and a half... and, it was n

Before a patient can be discharged from Post-Op Recovery, the patient must be able to effectively void their bladder on their own. Of course, they should also be able to get themselves to the bathroom without falling over to the floor and their vitals should be in a safe, healthy range. If everything checks out okay, then the patient can be discharged and sent home to continue recovery. One of the problems Sheila has had consistently in her previous two surgeries was bladder paralysis due to general anesthesia. Her team of doctors worked together to come up with a solution so Sheila would not again experience this excruciating problem again this time around. Both Sheila and I are very happy to report that her team of doctors succeeded in solving this problem this time around! When Sheila was able to effectively void her bladder on her own by mid-afternoon, we began our journey of checking out of Recovery and the hospital. Here, Whitney is wheeling Sheila out of Post-Op Recovery...