Scattered Thoughts . . .

I'm adding an update at the top of this blog entry since I was notified of most of the laboratory test results shortly after writing this blog entry.  There are no big surprises so far in these test results so that is good.  We're still waiting on the results of the newest type of test that is mentioned below.  Honestly, I really don't expect any life-changing revelations to come from that test either though.  The severity and frequency of anaphylaxis that my body is enduring is a bit of a problem though. W e had to head up to Burlington a few days ago for what we thought would be a quick and uneventful visit to Oncology for me.  This is an every-six-months visit (well...  it is supposed to be every six months but the Oncology department is so busy that they are scheduling about nine months out at this point...  the soonest they could get me in for my next appointment isn't until June, 2025).  Since we're at oncology approximately three to six times a year due to re

I had another visit to Oncology at the University of Vermont Medical Center last week.  I had been up there a couple of weeks prior for some labwork which we discussed in this most recent appointment.   In the photo at right, it appears as though the hospital is empty but we found that the hallways being seemingly dark and empty was a bit misleading.  It was about 8am and my appointment was one of the first of the day so we expected the hospital to be rather quiet.  Most of the people we saw in the hallways were hospital employees.  I'm not much of a fan of waiting in lines so seeing the hospital being so quiet was good news.  I like being able to show up, check in immediately, and then quickly get called into the examining room. When we stepped into Oncology from the quiet and empty hallway, the waiting room was filled with patients waiting to be called in for their morning chemo. On the positive side, even though my health has been miserable this year, seeing all these chemo pati

I had my post bone marrow biopsy follow-up appointment with my oncologist today.  We discussed the biopsy procedure, my lingering pain at the site of the biopsy, my lab results and my current condition in a Zoom TeleVisit (seen in photo, at right) which meant we didn't need to drive to the hospital.  The appointment was in our living room.   First we discussed how I have been feeling over the past few months.   My oncologist seemed to be a little surprised that I am still feeling quite lousy since my ambulance ride to the hospital in January and that I am still having great difficulty in doing just small things for a couple of hours.  In order for me to do something for just a couple of hours (ie, grocery shopping, dinner with the grandkids, Kenzie's figure skating, Lukey's hockey, etc) requires planning and closely managing energy.  In order to do any small thing, I need to get extra sleep beforehand and taking extra medications for a day leading up to when we want to do

M y oncologist scheduled a few more appointments for me over the past couple of days.   I'm now scheduled to head up to the hospital on March 8th.  We'll head to the lab first for some bloodwork and then we head to Oncology for the bone marrow biopsy procedure.  I have some extra medications to take a couple of hours before the procedure too but that has already been discussed with a plan in place and medications already on hand.   A few weeks later, I have a video visit with my oncologist to discuss which direction to go with this.  She did point out, however, that if we find any serious incidental findings in the bone marrow biopsy then we would meet much sooner.  She actually mentioned that multiple times when we last spoke which is probably a hint that she suspects something else could be amiss.   My primary care doctor also set me up for a FITS Colon Screening test in late February.  That is so simple that it is not even worth mentioning.  The most problematic part of that

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

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...

I 'm lagging behind in keeping this blog updated which, for some reason, seems to be the norm for the past year or so.  Perhaps it is due to overwhelming fatigue.  Whatever the reason, here is an update to my recent oncology care blog entries I wrote in the past month or so. My overall health over the past year or two has been gradually worsening.  This rather lousy overall health has become my new normal so I'm kind of used to it now.  Plus, it changed so slowly that it was difficult to see.  Since I'm used to it now, I have been having difficulty in recognizing it as an everyday thing and a new normal.   The biggest concern and perhaps the most debilitating concern has been overwhelming fatigue.  On far too many days, I'm ready to head back to bed long before lunchtime and sometimes right after leaving the bathroom getting ready to start my day.  On these days, I have difficulty keeping my eyes open and I have no energy.  My brain wants to do things that interest me b

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

I was notified today that my Oncologist wants to discuss something with me again on Monday.  I'm not sure what she feels the need to discuss though since we just had a long discussion and exam at the hospital just yesterday.  I hope I'm not losing another specialist requiring me to search for a new one yet again. Sheila and I discussed a few possibilities...  like prompting me to go see my Primary Care doctor about my joint issues...  or seeing an Orthopedic specialist...  or maybe some additional bloodwork...  or maybe another bone marrow biopsy...  or maybe adding another medication to my long list of medications...   Naturally, I'll be wondering about this all weekend long.   UPDATE:  Nov 1st, 2021 - As I mentioned, above, I was notified that my Oncologist wanted to do a Televideo chat today, Nov 1st.  So, I called the office this morning to find out how they wanted to connect in Zoom.  The receptionist thought it was strange that I didn't get an email with a link

S heila and I had to run to the hospital unexpectedly at the last minute the other day to visit the lab in preparation of today's scheduled visit.  I figured I would be heading to the lab after my appointment that was scheduled for today but my oncologist wanted the lab tests done beforehand.  I got a phone call from Oncology requesting I head to the hospital two days earlier than planned.  Then, this morning, we headed up to UVM Oncology again for my scheduled appointment.   My usual lab results had no changes which is good news, I suppose.  The same things that have always been wrong with my lab results indicating Systemic Mastocytosis are unchanged.  The good news part of this equation is that the numbers aren't worse. My oncologist was a bit concerned about two things...  1) She seemed shocked by how low my oxygen saturation is getting at least once every week.  She was visibly surprised hearing that my O2 levels are getting down into the 80s (%) and sometimes even lower. 

We were back at the hospital today...  back in Oncology...  and back seeing Sheila's surgical Oncologist.   On the drive up to the hospital, Sheila and I were talking about being unsure of where our emotions are at this point in her treatment.  In the beginning, it was a bit of a roller coaster ride of emotions. Then, for a long while, especially during the months of daily visits, we were definitely a bit numb.  It was like we were on auto-pilot and just going through the motions...  one step at a time.  Then we had another roller coaster ride during her last treatment stage which included an ambulance ride to the ER.  Neither one of us is quite sure about where we are at now.  I think we're just bit weary of hospital visits.   So we headed back up to Burlington today to spend some time in the Breast Care Center at UVM Medical Center... Today's visit, fortunately, was uneventful.  Sheila's imaging looks good so that is good news.  There is no swelling anymore,

For two years, we have been focused on Sheila's cancer and I sort of pushed any thoughts of my own health to the back of my mind.  Of course, when problems arose, I visited doctors and did what needed to be done to stabilize my health again but I definitely have not been pro-active in pursuing my own healthcare problems while we were handling Sheila's cancer.  There was only so much we were able to handle and, to be honest, we're both pretty sick and tired of spending so much time in hospitals but now it is my turn. So, yesterday, we headed up to the University of Vermont Medical Center and spent the entire afternoon at the hospital...  again in the Oncology department but visiting a new doctor.  My illness is classified as a myeloproliferative disorder so oncology/hematology is the place to be at this point.   Unfortunately, since we were back in oncology, we didn't even get a change in scenery!  Actually, what was really weird was that when we left our examinin

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

Heading back to Radiation Oncology... she looks as though she is walking with some purpose, doesn't she? I'm very far behind in blog entries as well as being very far behind in accomplishing things that need to be done around the house so it is time to try to put together a few blog entries in an attempt to doing some catching up.  My health over the past couple of months has been rather poor, generally speaking. As a result, I feel as though nothing has been accomplished since before Sheila's cancer diagnosis... so, nothing really has been accomplished since around the time of our time at the lake house last summer... and that's a loonnnngggg time! We had a short break in Sheila's treatment from Thanksgiving until the first week of January. This was a much needed break for both of us but not nearly long enough. Now we are back into hospital visits and medical appointments a couple of times each week. Unfortunately, I'm still exhausted! Sheila feels th