Scattered Thoughts . . .

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

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

I've had an ongoing issue with skin cancer on my face for the past 12 years or so.  It really comes as no surprise since I grew up on an island and spent most of my time working outdoors and either at the beach or boating during my free time.  Having fair Irish skin hasn't helped.  Consequently, quickly developing a blistering sunburn on my forehead and nose was a common occurrence no matter what sort of precautions I took.  Well...  I could have avoided being outdoors but that wasn't much of an option.  I do avoid being outside as much as possible today but when I was young and very active that was not an option. During that first year of skin cancer 12 years ago, I had surgery to remove a sizable cancerous tumor in my cheek requiring twenty-seven stitches to close the area.  Since that time, I've had numerous biopsies and little spot treatments here and there.  In the past few years, my doctor has given up on trying to keep up with spot treatments because the develo

A few months ago, I wrote about Sheila and I discussing whether or not to continue Sheila's cancer treatment.  The treatment was making her daily life miserable.  Worse yet, this treatment was to continue for a total of ten years.  Ten years of absolute misery didn't seem like a very wise option to choose for someone who is supposed to be recovering from her second bout of breast cancer with lymph involvement.  After some serious complications, ER visits, and a significant deterioration in her quality of life, we both decided it was time to stop treatment.  As one would expect, Sheila's oncologist wasn't too thrilled with our choice.   The oncologist recommended some further testing to determine risk factors with and without her continued treatment and we felt this would be a good idea.  In the back of our minds, even though Sheila's quality of life absolutely sucked during treatment, we always knew we would second guess this decision to abort her treatment i

For those following this blog, you know that Sheila has been in treatment for her second bout with breast cancer.  Additionally, this time around, the cancer had spread to her lymphatic system too.  She has been through successful surgery to remove the cancer (well...  this was actually her third cancer surgery), aggressive radiation therapy and, at this point, 13 months of ten years of drug therapy targeting her specific form of cancer in order to minimize the chance of recurrence.  More importantly, as many of you already know, Sheila has been having a very difficult time with the first 13 months of this drug therapy...  although I suspect few know just how much this long-term treatment has affected her quality of life.   Sheila's problems with this drug treatment have been so difficult and so severe that she has been to the ER.  Even the ER doctors were visibly concerned and a bit shaken because the initial thoughts were that perhaps her cancer had spread to her brain.  I k

I just thought I'd write a quick update on Sheila's treatment problems.   After the ER visit a few weeks ago, Sheila's Oncology team decided that the significant symptoms she was experiencing were probably not due to her new treatment drug.  Since they were fairly certain that the treatment wasn't presenting these significant symptoms as side effects of the treatment drug, we came up with a plan to get back on the treatment plan and give it a shot again. Unfortunately, Sheila was back on this particular treatment drug only two days before one of the significant symptoms appeared again... and now it is only a week later and both of the significant symptoms that landed her in the ER are back again. At this point, we're both quite certain that these are actually side effects of her cancer treatment and they are far too severe to be tolerated for a long term treatment plan. Right now, these symptoms are more mild than the first time around but it is still only a m

Today, Sheila moved into her last phase of radiation treatment.  Well... Sheila thought this same thing 11 years ago (her  last phase) but here we are again.  Sheila is now in her Boost Phase of radiation treatment and she is pretty happy about that! This last phase is a "boost" of radiation to only the area of the tumor. Up until today, she had been getting radiation to the entire right side of her chest... from the lymph nodes under her armpit to the center of her chest. Now, she is getting one focused beam of radiation to just the area of her tumor for seven treatments. The good thing about this Boost Phase is that most of the tissue and skin that has been burned and irritated over the past 26 treatments will now be able to heal without additional radiation making this large area worse. Sheila is definitely happy about this news. The itching, burning and peeling was getting pretty rough for a bit. Now, these last seven radiation treatments will be focused to a r

Another lunch in the hospital cafe. Sheila has moved into a new stage of side effects. This new stage of side effects has appeared only about a week before she moves into a new stage of radiation treatment. More on the additional change in treatment another time because I want to write about the current issue... burning, peeling and itching. At this point in radiation treatment, Sheila's skin is showing some burns. She has already been showing signs of a "tan" for weeks and we have known that the tissue beneath the skin has been getting irritated but now she's getting into burn territory.  Sheila has been a little bit swollen since her surgery and the radiation isn't really allowing the swelling to go down. She had already been feeling "tender" in the tissue under the skin and that continues to slowly worsen. Sheila says it isn't bad but it is obvious by her guarded reactions to things that she does feel tender in various areas.  The other

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

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