Scattered Thoughts . . .

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...

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

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

Sheila's radiation treatment began yesterday. The next two months will be exhausting for both of us but mostly for Sheila   (I need a nap already and it's only been one day of radiation treatment) . For Sheila, this daily treatment will progressively get more taxing, exhausting and painful as the radiation sears and burns through her breast and underarm. I have some photos to share, which I'll insert below, but as I sit here staring at my computer screen, I'm at a loss for words. Maybe I'll just write whatever comes to mind when I see each photo and insert that with the photos... The entrance to Radiation Oncology is kind of cool but definitely a bit ominous... it is separated from the hospital by a long corridor and, now that I see it in photos, I know exactly what will make it less ominous... This hallway needs far more artwork on the walls with spot-lights highlighting each piece of art. I despise suspended ceilings... whether in residential homes or

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!  

The following morning after we sat down with the doctor to discuss the results of Sheila's mammogram and ultrasound imaging, we were headed back to the hospital for a biopsy. Sheila has been down this road before. Her first biopsy was 11 years ago, then surgery, radiation, chemo and the years of follow-up testing, imaging and exams. But, this morning, we were back at square one again. I have to say that it was not a pleasant feeling to be back at square one again. We both were so anxious that we thought we couldn't eat. We sat down to eat but we both commented that we had no desire for food whatsoever. The funny thing is... once we started eating, we pretty much finished our meals. I think the food absorbed some of the stomach acid being pumped into our empty stomachs due to our nerves. We felt a bit better after eating. On the drive to the hospital this morning our conversation changed from a pep talk type of thing giving positive reinforcement to someone who has already

Whenever I go through periods of poor health, I struggle with finding ways to feel productive, useful and even nonburdensome to those around me. As any chronically ill patient will attest, far too often I'm feeling too lousy to accomplish enough to stave off feelings of inadequacy during these periods and it is incredibly difficult to find ways to feel productive. Physically, during these periods, you are fighting off pain and a complex and constantly changing myriad of debilitating symptoms. Mentally, you are fighting off being bored to the point of tears because whenever you are feeling lousy, you are sort of in a vacuum getting nothing accomplished. Emotionally, you are fighting feelings of inadequacy, being a burden and being unproductive... you struggle with not having a purpose... you even struggle with the grief of losing the healthy, strong and pain-free body you once had, the active life you once had, the career you once had... let's just say that struggling with gri

My health crashed again last night due to some typical Systemic Mastocytosis issues affecting my blood pressure and gastrointestinal tract so I had to take some emergency medications to help stabilize my body.  Today I am recovering. One of the emergency medications I had to take makes me extremely drowsy so I must recover from this drowsiness and avoid all potentially dangerous activities such as using power tools and driving because this drowsiness also affects my cognitive abilities (of course, my mast cell issues also affect my cognitive abilites). I also need some time for the medication to balance out my body allowing my health to recover. On days such as today (and I have far too many of them which is why you are seeing a flurry of blog entries lately) , I try to indulge in some art therapy by working on photos... sometimes painting... sometimes working on model railroading models. Today, I chose to work on some photos. As I mentioned yesterday in a blog post, I am trying

Our house is on the other side of this stand of trees... to the right... The weather has been awesome this morning here in central Vermont.  The skies are clear, visibility is good and the temperature is in the 60's.  This is definitely my kind of weather! I have great difficulty in temperatures above 74 degrees. When it gets that warm, I must minimize my exposure or risk (and the probability is high) breathing problems, anaphylaxia, gastro-intestinal problems and a whole myriad of neurological problems depending upon which area of my body my mast cells decide to attack.  Fun stuff.  So, I try to minimize my exposure to temperatures above 74 degrees.  Today's temperatures, however, are just awesome for my health which allows me to get outside and be mildly active.  Fortunately, my health is cooperating along with the mild, beautiful weather! The leaves are getting a bit brighter in color now so I figured I need to take advantage of the beautiful morning and get outs

I've been busy the last few days working on some sketches again.  This time, however, I've been sketching the new World Trade Center which is not completely built yet.  I'm not even completely sure of the design.  Of course, because the buildings do not exist just yet, trying to get the scale right was a bit difficult.  Being the perfectionist that I am, naturally, I am still not completely happy with some of the angles and proportions but I think it might be close enough. Regardless of whether I am happy with this sketch or not, I wanted to post a small copy here before the skyline is actually completed in real life.  It will be interesting to see just how close I am with this little project.   Funny thing is, the more I worked the sketches and the more I researched what is actually being built, the less I like this design.  I am left feeling as though this was a poor choice for the design of this high profile project.  Artistically speaking, I'm not sure what they w