Another poor night’s sleep. Got up in the middle of the night to use the bathroom, and again in the morning. Nausea very bad and couldn’t eat a thing all day except for some dry toast and ginger tea. Dan, the PT stopped by. He took my vitals – blood pressure was up to 172 at one point. Apparently, this is not unusual. It dropped a bit later but stayed in the 150s all day. Needless to say, we didn’t do any exercises.
Category Archives: Blog
Day 114: Wednesday, September 2 – 2nd day of chemo
Second day of chemo. We went straight to the infusion center and met with nurse Carly. A similar routine to yesterday, except no Cinvanti. It took about 5 hours, 11-4. At the end, Carly showed Maureen and me the patch for the rescue medication, Neupogen. It goes on the arm and is automatically triggered to inject the dose 27 hours after you apply the patch. I’m feeling a little more fatigued after this session, but nothing major.
In the evening got a text from Vasu Kolli from the ACY Tech Center. The gang is still together after all these years and was meeting for dinner. We video-chatted a bit over a poor connection, and it was good to see some familiar faces.
Day 113: Tuesday, September 1 – 1st day of chemo
Had the first day, first cycle of chemo at MGH Waltham. So far so good. We had three appointments, 1st the blood draw, then the consultation with Choy, and then the actual infusion with nurse Erinn. The infusion is broken up into multiple segments with hydration in between. They also add Zofran (anti-nausea) and Decadron (corticosteroid), and Cinvanti. (long-acting anti-nausea). At home I can also take Zofran as needed – the medical term is PRN standing for the Latin “Pro Re Nata” literally “As the thing arises.” I want to be cautious about taking more than one new med at a time so I can evaluate side effects. I remember doing some infusions at Dana Farber back in 2006, but I don’t remember them adding in additional drugs to mitigate side-effects of the chemo drugs (Doxorubicin and Cisplatin). Came home and felt ok, but had a poor night’s sleep (55). The nurse warned me that the steroids can make you jittery.
Day 112: Monday, August 31 – Keeping Busy
Tagged as: Home
It’s been two weeks and two days since I was discharged from Spaulding and I have not been posting as much now that I’m home, though I did write and post my review of Karel Čapek’s “The Gardener’s Year.” Some of the other things I’ve been doing are daily exercises and playing Crossplay with Devin, Miranda, and Tom Coll. My stats so far are 19 wins and 6 losses, not counting practice games against the computer. My best play was “Mestizo” for 98 points, and the longest word “Cynophobia” (fear of dogs) adding on to Tom’s play of “Phobia.”
Martha and Charles have been over a few times. On Saturday we sat on the deck for a while. It’s a bit of a challenge to use the walker to get over the lip of the sliding door, but I think I have it figured out. Being able to put weight on the right leg is essential. Also, on Saturday I got a call from Patrick Hearn, a “gentleman farmer” from Acton. He’s married to a member of the Acton Garden Club, which is how I met him. He has a five-acre property that he’s developing as a farm on organic principles; he gave me a tour earlier this year before I broke my leg. I’d lent him my copy of “Look to the Land” by Lord Northbourne, an early proponent of sustainable farming, and the previous owner of the estate where I went to school. He’s credited with coining the term “organic farming.” Patrick stopped over to return the book, and I lent him another one, the gardening book by Karel Čapek
I’m at the point right now in my recuperation where I can get in and out of bed by myself and move around the house. Today Maureen had a doctor’s appointment, so between that and walking Trixie in the morning I had to make my own breakfast and lunch.
We’ve been watching TV, but no more than usual. Just a few series: Ted Lasso, Lanterns, Lucky, and Stuart Fails to Save the Universe. We’ve given up on Reacher – too much blood and a plot line that’s more implausible than ever.
Most days I take a rest with my legs elevated to reduce the swelling in my legs, and I’ve been listening to music. I just wrapped up Schubert’s symphonies, and listening again to Dvořák. I’ve never been much of a fan of Mahler but perhaps I’ll give him a try next.
Day 110: Saturday, August 29 – Emerson Home Care
While at Spaulding we talked with the case manager about post discharge home care. We were not happy with the VNA (Visiting Nurse Association) that I had after release from Encompass in July, but we must take some blame for that as we didn’t research the different companies in our area. This time we looked over the options for home care groups covered by my health insurance and picked Emerson Home Care. We’re glad we picked them. We get visits from a nurse, an OT, and a PT. We’ve planned their visits, so far one per week. They call the day before to check that the time is convenient for us and they show up on time. The quality of care is excellent. There’s not much for the nurse to do except take vitals and check my medications and possible side effects, but the therapists have essentially divided their work with OT focusing on upper body exercises and PT on leg exercises. I am certainly noticing an improvement in transfers and walking with the walker. Several times this week I’ve been able to make breakfast for myself. I need to bulk up as much as possible as chemo starts September 1. It remains to be seen how much it knocks me back.