A Case of the Mundays (Day 4 Cycle 3)
Schedule Today:
None. Oops - visiting nurse today??!! (Trying to reschedule - stay tuned - ok, blood work being done tomorrow at Dana Farber)
The visiting nurse called Summer this morning to set the time for her visit - except the appointment wasn't listed in Patient Gateway, so we didn't know about it and unfortunately, we are not in range for the team of nurses that service Wrentham, being that we are in Manchester. SHIT. So luckily the blood work can be done at Dana Farber when she goes in for her appointment tomorrow. Crisis averted.
Summer wants to take a shower today & you couldn't possibly imagine the amount of thought & planning that needs to go in to showering when you have 1. a PICC line and 2. are attached to a chemo infusion pump. Bob and Summer spent time planning out the shower details, covering her arm with the shower sleeve, and then strategically figuring out the placement of her pump/backpack so it would not fall or get wet. And .... SUCCESS! :) 🧼 CLEAN!
 |
| Rash on Summer’s leg from sunlight |
After her shower, Summer was enjoying the day outside on the deck in the sun when she noticed that one of her legs had broken out in a rash. And oddly it wasn’t just the part of her leg exposed to the sunlight. Summer came inside and posted a picture of it to Patient Gateway and Dr. Parry called quickly and explained how incredibly sensitive the meds she is on right now are to sunlight. During active chemo, Dr. Parrry does not want Summer out in direct sunlight. Luckily within minutes of coming inside, the rash went away.
Today was another tough day as Summer grapples with the physical effects of prednisone. She woke up at 3am this morning and couldn’t fall back to sleep plus she hasn’t pooped all day so we are trying to counter that with colace & senna. It was also another emotional sad afternoon/evening as well as this all just weighs on you. So heavy. Makes you appreciate the health that we had, the times before we didn’t know this pain existed.
We are soooooo looking forward to tomorrow when the chemical infusion stops and Summer comes home backpack free for some rest & recovery. After tomorrow 1/2 of her chemo treatment will be DONE!!
Heart wrenching! The simplest of task must be carefully choreographed to minute detail. A whole new experience that fortunately most of us don’t have to navigate but appreciate Summer’s fortitude to endure it as best she can. We have a new appreciation of her strength and character. You gotta admit that everyday is an exceptional trial and requires superb resilience on Summer’s part. Yea, Summer! Pops
ReplyDeleteSo true, Pops! Every single day is a new experience and a new challenge. Sometimes it's mind over matter, pure will power. Summer has been a SUPER HERO through it all. Her inner strength is incredible. And I know how tired she is and wants so baldly for it to be OVER (we all do!!). And it will be over - there is an end in site. The prognosis is EXCELLENT and we will get there!
ReplyDelete