To all of my friends in the New England- I hope that you are surviving the insane amount of snow that has come our way. On behalf of us all, I have taken it upon myself to send Punxsutawney Phil a strongly worded letter in regard to this “6 more weeks of winter” bullshit.
I am sitting at home on our 4th snow day in two weeks. I’m a bit torn as I really could use the extra rest and down time but at the same time it is hard to get back into a routine when I haven’t yet had a full week of work since before my last hospitalization. I guess I’ll just stick with not complaining since my landlord takes care of snow removal and I am left to binge watch Crimes of the Century and drink tea all day under my heated blanket. (To anyone working in Academic Affairs just accept that the add/drop period will never end. Ever, ever.)
Despite last week’s snowfall, I miraculously made it to Boston. I had every intention of writing my update last Tuesday after my appointment but in light of the MBTA basically imploding upon itself, my blog post would have been less about my health and more of a giant rant about public transit riddled with a generous amount of profanity and “f-bombs”. Seriously, anyone that tried to take a commuter rail, T, bus, or cab in the city of Boston last Tuesday must share my pain. How they managed to pull off a PARADE the next day when they couldn’t even get commuters to their jobs/lives the day before is beyond my comprehension. By the time I got to my appointments I’m almost certain my blood pressure was roughly one million over a thousand. (END MINI-RANT)
Per usual I was in Boston from morning until late afternoon playing the waiting game. In that time period I had two appointments: 1.) Ophthalmologist 2.) Medical Oncology. Stacey Applesauce Goldman was kind enough to join me in the waiting game and even sit in a dark exam room while I napped on the exam table.
Eye Doc: Good news! The last time I was there, three weeks ago, I was told that there was a trace amount of fluid starting to collect behind my retinas. This is of concern if ignored but can easily correct itself if one goes off drug. Apparently the three weeks spent on a chemocation did the trick and no fluid was detected. (I still want that seeing eye dog. Maybe I can make an argument for a therapy dog instead?)
Yes this one will do quite nicely, right Blythe family?
- Oncology: This appointment was mostly just to get me back on chemo and to bring the doctors up to speed with the partial bowel obstruction experience.
- Obstruction Recap– They determined that the bowel obstruction was unrelated to the study drug and left it at that. I tend to agree as I do have a history of sad guts prior to this trial. I mean, my intestines were cut in half and sewn back together only two years ago, that doesn’t just go back to normal overnight. My guts are cranky. So moving forward the plan for these cranky guts is to meet with the gastroenterologist again and plan for a full colonoscopy in a few weeks when she feels it is safe to push air through the intestines. We should have a little more information about what the thickening of the colon means after the colonoscopy.
- Chemo- After much deliberation amongst the group, it was determined that I would be put back on the chemo regimen at a reduced dose of the SAR drug. I’m not sure how effective this will be in curbing my side effects as this drug could possibly be a placebo BUT it’s one less pill I need to take per day. Psychologically, it’s oddly helpful. So far this week I’ve experienced one day of visual blurring (common for first day back), fatigue (par for the course), nausea, leg swelling and stomach discomfort (details spared). So I suppose everything is back to normal then. It’s not great but it has been much worse.
I must be honest, I have thought a lot about quitting the trial over the last few months. It has been incredibly difficult and when my last CT scan came back at a plateau, it was tough to swallow. Through the last few weeks of being off of the drug I have had to physically, mentally, and emotionally rally. I think I am in a place now where I can at the very least commit to a few more months of this and see what comes of it.
As I have said before, part of the challenge is having no defined end date. It’s just this endless cyclical shitstorm. I’m going to try and reframe this in a more incremental way. My next CT scan should be in April. If I can just make it to April I’ll be okay. It doesn’t mean it’s over then, but it’s a small leg of the journey that I can compartmentalize.
So that’s all I have to say about the visit. A long day and not a lot of news.
Lastly, but most importantly I must express my gratitude…
Holy moly the response to my request for help has been unreal!!!! This past weekend alone, Cory insisted that I relax in the bathtub while he clean my apartment himself (boyfriend of the year, right?). From coast to coast and beyond the US people have been graciously helping in any way that they can. I have received delicious, healthy, home cooked meals made with love. I have received thoughtful gifts, offers to accompany me to the doctor, offers to help with laundry/cleaning/errands, generous monetary contributions to help with medical bills, and beautiful encouraging cards/texts/messages.
All of these acts of kindness add up and make my life a little bit easier, but more than anything they lift my spirits. It’s a major reminder that as fiercely independent as I would like to be, I cannot do it all myself. Your kindness is fuel to keep going and keep trying even in the midst of a difficult day.
THANK YOU for every little act of kindness!