So many people encouraged me to go with my gut, so I made the move to Memorial Sloan Kettering Cancer Center with Dr. DeAngelis and her team.
After finally having all of my MRIs (pre-surgery, post-surgery and post radiation), Dr. Umemura said she and Dr. DeAngelis think I should go for another round of chemo and see how that goes before considering the immunotherapy after all. This for 3 reasons: first, what they see looks more like a “brush” than a full tumor, so the chemo could potentially deal with that. Next, since I just finished the radiation at the end of June, I am not yet eligible for a number of trials that require at least 12 weeks post-radiation. So this will buy me that additional time as well should the chemo not be effective for round 2. Lastly, I present clinically better than my MRI images – that is to say, that although I don’t feel fully myself, I present well when they check my strength, my balance, my ability to hold a conversation, etc. Many people post-brain surgery don’t have the capacity to move around, have no motivation to get out, just want to lay around the house, lose some intellectual capacity.
I went to MSKCC on Wednesday for a half day of testing: blood, blood pressure EKG (see below) and also to discuss meds with the nurse practitioner. I started with a 5-day course of chemo that I will take just before bed each night to minimize any potential side effects. After the 5 days, I have a 23-day break and then start another round for 5 days. Assuming I tolerate the chemo well, they will up the dose a bit for the second month after lab work. Then an MRI to see if this chemo was effective – fingers crossed. If not, we will consider immunotherapy on trial.
This has been an emotionally and physically challenging week. My energy had been building, but that took a turn for the worse this week. I know the ups and downs are normal, so not too worried, but it does not feel good to lose energy and drag again.
As I have continued to face my health challenges, I can tell you I feel the support daily from so many people: my Peace Corps family, has been sterling! Whether the day-to-day/face-to-face support from Susan Locke and Ed Sullivan, the wonderful time we had at a lunch with those 2 plus Lyn and Malcolm, the gifts of my hat from Lyn that I wear everyday to cover my scar, the photo from Susan on my Fire Island bedroom wall, the watercolor that Ed lovingly did of Antonio and me in front of the Fire Island house (see below), the visit from Buffy and her help getting me to and from my radiation, the candles so many have lit and Kathy Ingley continues to light, the messages via email and on my blog from so many, the upcoming visit I so look forward to from Mark Burr….. it just goes on and on; I love it all!
This week has been a challenge to my dad who had minor surgery that was supposed to be out-patient but wound up a bit more complicated, so he spent 1 night in the hospital – now at home, to Leslie who lost her Mom, to Miriam who broke her foot and will have surgery, to Marti who had a stroke, so I get some perspective that it is not just me! We are all mortal and things start to break down. Antonio is away for work until the 22nd (I feel his absence) and Miguel left for Amsterdam for a year, though he says he will be back to visit every 2 months. I miss him already!
From Geoff in Bangkok: “I don’t have words to communicate my feelings, I only have two arms to hold you, hold you tenderly, hold you tightly, hold you and protect you. Let me know when is a good time to visit and I will negotiate here.”
From Nora, an ex-Peace Corps volunteer: “I haven’t written for some time, but think of you often, and continue to get your news from your blog. I’m still praying for your recovery, and for your strength (physical, emotional and spiritual) as you face challenges on a daily basis.”
“I took a look at ‘How Not to Say the Wrong Thing’ today. What an insightful and helpful article! Thank you for all you continue giving to others!”
And from Laurie Newell, Xavier and Malcolm Goodale.