Share. Connect. Love.

It's Complicated

I have been diagnosed with a rare type of incurable cancer-that's the not good news. The better news is that if we get this right I will live for years and more hopefully[...] read more

Latest journal entry


It feels sort of icky to post something right now and try to make my claim for attention on the internet while I know that my many friends and family members have been going through so much with Hurricane Harvey. At the same time I’ve procrastinated on this for quite a while and things are starting to happen again, so I think I kind of have to say something. 

After my appointment with Dr. Hope about qualifying for the clinical trial, I eventually settled on when to get my next MRI to hopefully show progression and qualify for treatment.  The MRI was Thursday; more on that later. I also scheduled to see the oncologist at UCSF (not Dr. Hope) who is coordinating my care between all the offices and doctors there and my Redding oncologist. I see her Tuesday/tomorrow if I finally get this posted tonight (I started Friday!). I am not sure if Dr. Hope will have seen my scan yet by then, but I know the oncologist will have and will work on making sure he sees it very quickly. So essentially I’m being hopeful that next week I will know more about being able to get the PRRT treatment. Yes I am hopeful there has been progression (nice way of saying the cancer is growing).  My experiences with the symptoms seem to be worsening. That doesn’t guarantee progression has happened, but it’s the upside I am hopeful of.  [Symptoms=face flushing red, body turning blotchy red, some level of heat/burning feeling accompanying redness, heart racing and if I don’t sit down quickly it will escalate to include trouble breathing hyperventilation like, face swelling, profuse sweating, etc.  I also refer to that collection of stuff as “an episode’ or “turning red.”  On a good day this will happen 3 or 4 times, on not good days I lose track of how many times it happens. There are other symptoms that aren’t daily, but that’s a whole other story.] 

In May, my monthly Sandostatin injection that’s supposed to help control my symptoms went up to 30mg from 20mg.  By July I was also given 30-1mg shots to use on my own each month. Lest we forget, Sandostatin is supposed to further slow my tumor growth. So each time I opt to take more and more of it, I am theoretically working at a cross purpose of having the progression to get a significant treatment.  In July I didn’t use them for the first couple of weeks after my previous big shot. By later in the month I was using 1 or 2 per day. It’s the typical pattern that my symptoms are less frequent aka more good days just after the big monthly shot. By the last 10 days or so before I am due for the next shot every day is usually a day where I lose count of how many times I turn red.  My last two 30mg shots were on July 27th and August 24th (every 4th Thursday/28 days apart).  After each of those I did not have a noticeable period of good days. I am continuing to take a 1mg shot each day and that really does not seem to make a difference either. Surely, it does make some difference – I mean omg what would life be if I wasn’t taking anything at this point?!  So now I’m up to about 60mg going into my body each month. This last week since my August 24th shot, I’ve also taken 1 mg every day and my coworkers are all commenting on how much they are seeing me turn red (there are some that don’t comment but I notice the little eye flicks to my arms or face as the redness is happening). Luckily my students have yet to notice anything enough that they have cornered me with questions. I am avoiding telling them for as long as I possibly can. I think it would leave me with a lot of wild rumors and confusion floating around.  

Just a bit more on the symptom front; I still “look great” as everyone who has occasion to know I have cancer but is not around enough to see the signs keeps telling me. And realistically even though it’s an insane thing to just have to stop whatever I’m doing and sit down for a few minutes throughout my day, every day; it’s sort of not that bad. It has evolved into my normal life.  I know why it’s happening, I know what to do so that it does not escalate, I know it will pass in a few minutes, etc.  That being said, it also has its frustrations – went to a water park over the summer and realized that climbing too many stairs will set off an episode, now whenever I have a bowel movement I almost without fail will have an episode no biggie until you’re at work and the fire alarm goes off while you’re in the bathroom and you’re one of the emergency coordinators who should be making sure the building is clear but instead you had to rush out and find somewhere to sit in the evacuation area ASAP so you didn’t hyperventilate and swell up like a cross between E.T. and Emperor Palpatine in front of everyone. Yes that is a thing that has happened, not quite that dramatically in pubic yet, just at home so far.

Anyway...The MRI experience wasn't nearly as bizarre as the first one. They did a simpler version that did not require that they lay all kinds of stuff on me like they did the last time; just one light thing across my chest. This time they also gave me an option of wearing a robe with the hospital gown which I declined. I don't care if I walk around the hospital with part of my back showing out of the gown if it means I am less hot. Less hot and less stuff piled on meant it felt less claustrophobic and I did not have to hallucinate my way through it. I may also have taken a pill an hour before we arrived to make me more relaxed to the point of being semi-loopy as I tried to navigate Richard through San Francisco traffic, but that's besides the point. I went into it thinking surely it would take less time than the full body MRI since the order was to focus on the liver. That turned out not to be true. What I learned after they got me back out of there was that the order was to take 14 images of the area. And that while the tech was nearing completing setting those all up the computer did something funky so she had to start over. That would explain why I spent so much time in there with nothing happening. The most unnerving part of it was that when the computer voice would tell me to "inhale, exhale, hold your breath...............relax," I could never seem to hold my breathe quite long enough. I invariably had to let it out just before she would say relax. Granted it was a long wait until she would say relax and I do remember it being a challenge the first time. I'd told myself the first time that part of the struggle was that I had so much weight on my chest that surely that was making it more difficult. This time I didn't have that excuse. I have no idea what that means, maybe nothing, maybe she just takes too long to say relax. And I am overdue to relax.

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted