Yesterday was a new record for me on a treatment day, 9.5 hours! I was there from 8:30 am to 6:00 pm. My nurse, Karen yesterday, started off by showing me all the questions she had before getting me started. She is a former military nurse and she is organized to the hilt! So I just settled in and started working (always have my laptop now, these treatment days are never short like they were back in the day when I would go in for one injection.) Being able to work does take away the stress and anxiety of needing to get out of there. I just needed some help with Lola, which Sarah, Kensley, and Piper kindly did.
One of the stumbling blocks to get moving was that Dana Farber told Smilow they wanted to add an additional drug to my 3-drug regimen, Kyprolis (carfilzomib). Smilow had already gotten authorization from my insurance but the Smilow pharmacy needed more information before giving it to me with my other drugs. Adding the 4th drug is, I am guessing this is the correct terminology, an off-label use for it. They were asking for a scientific paper or some such. So Alfredo (APRN at Smilow) and Tina (APRN at Dana Farber) were “penpals” all day. It was finally approved late in the afternoon, and was started as soon as my first (long) infusion was done.
This reminds me to tell anyone who has cancer to seek a provider/department that specializes in your type of cancer and ideally in an academic setting, even if you have to travel, and even if it is for consultations. Adding this 4th drug to the regimen I am on is standard at Dana Farber. It is basically unheard of at Smilow. Dana Farber has a Multiple Myeloma Department, Smilow has a Hematology Department. That said, oncology nurses are amazing everywhere. Having Alfredo Axtmeyer on my team at Smilow has made a world of difference. But even phlebotomists at Dana Farber are better. Just my two cents.
Back to me, I am having some symptoms, it is always difficult to tell if they are from the treatment or from the cancer. I am experiencing some bone pain (waxing and waning), lowering blood counts (ANC, hemoglobin, and platelets), fatigue, a little nausea, headaches, tiredness from benadryl on treatment days and then lack of sleep from dexamethasone after treatment days.
We take off for our Hampton Bays vacation tomorrow morning, but first I have to go in Smilow, for a blood check, possible neupogen shot, and possible blood products (maybe give me a little boost of a unit of blood before I leave). And then a Quest blood draw on Wednesday somewhere on the island, and an early morning move out on Saturday for an 8:00 treatment back at Smilow on Saturday. Good times! But it will be a good time in any case – can’t wait to be with family and get on that beach.
One last note: get vaccinated for COVID-19. If not for yourself, for the young children who cannot get vaccinated yet, and for me who did, but it wasn’t effective, and for people like me who are immunocompromised and at greater risk for severe cases of COVID-19.
Steps off soapbox.