First of all, a couple of clarifications. Dr. T. is not my radiologist but my radiological oncologist. Big difference. BeJae has named the Novalis Tx linear accelerator that radiates me “Little Bang”. I’ve adopted that name, but began using it without explaining it. BeJae is brilliant when naming cats, dogs, and apparently linear accelerators.
Dan stayed late last night and we ordered in from Blue Jeans. He had the penne marinara. Seeking more protein, I had a large tuna grinder (grinder is Massachusetts talk for a sub sandwich.) I discovered that in addition to my taste buds going south, the interior of my mouth had continued to degrade. It hurt to eat the bread! Realizing that this may be my last grinder until June, I balanced the pain with sheer enjoyment of eating. All that for fresh baked Italian bread, tuna with low-fat mayo, lettuce, tomato, onions, and pickles? Hey, you take your treats when and where they’re available. It’s all perspective. The PET feeding tube gets installed on Friday. The tube will be my new friend.
Slept in late this morning, until nearly 9:00 am, and did my usual morning things. I figured that Cheerios are out for now and opted for soft and smooth Cream Of Wheat, the hot cereal that carries childhood memories. I was concerned because Cheerios has a lot of Iron, which I need. Turns out, a single serving of Cream Of Wheat has 50% of the Iron RDA and I eat a double serving. So I’m better!
Ann & I hung out reading, watching our HGTV home improvement shows (we have lots of tips saved up), and talking. I did my first set of swallow exercises and found them less comfortable than yesterday. I see a trend. Rode my LifeCycle for twelve minutes at half my normal resistance, drank a bottle of water, and had lunch. It was about 12:30 pm. I lay down on the couch and asked Ann to wake me if I still was asleep at 2:30 pm. We planned to visit my parents this afternoon.
Ann woke me at 2:30 pm, but it took me fifteen minutes to reach the sitting position. Rudy Dog napped with me and suggested we remain curled up on the couch. I found my feet and walked around waking step-by-step. Then it was time for swallow exercises set two.
Ann & Rudy & I soon left to visit my parents. As is the norm for a Sunday visit, we watched sports while we talked. Dad was none too happy with the TV. The Celtics lost but lead the series 3-1. The Red Sox were ahead 4-1, when the knuckleballer Wakefield was pulled from the game and the reliever promptly gave up three runs to tie the score. Conversation easily won out over sports! Rudy is always happy to see my parents, even happier when Mom takes him into the kitchen and spoils him with a little chicken (white meat only for Rudy Dog.) Ann & I teach our dogs not to beg. The lesson is a bit looser at Mom & Dad’s home.
Tomorrow is a busy day at Dana Farber with five scheduled appointments: blood draw, radiation treatment, meet with Dr. T. the radiological oncologist, meet with Dr. H. the oncologist and team leader, and chemotherapy infusion. Sounds like a fun day! Last Monday, Dr. H. noted that my red blood cell count and protein levels were lower than he liked. I’ve spent all week watching my Iron and being certain that my meals maximized my protein intake. It will be interesting to see where my blood levels are tomorrow. I’ve been quite fatigued since Thursday, which goes hand in hand with the worsening condition of my mouth from radiation. Fatigue is also a sign of low red blood count. I hope my red blood cell count is up in the normal range or at least shows significant improvement. I would like to avoid a blood transfusion. But whatever I need, just Bring It On! Knew this whole treatment process was not going to be pretty when I signed on. Also was very grateful to be able to sign on, that a successful protocol is available. We live in amazing times.
Thanks everyone for notes and good wishes. You are a constant well that I draw on for comfort and support. You make this journey gentler for me.
Love…
Richard
I initially named the Novalis Tx “Little Big Bang.” It was a nod to that old Dustin Hoffman movie (that I keep meaning to see again), Little Big Man … And a nod to the other kind of accelerator I found online, a particle accelerator in which a team of scientists are trying to recreate the Big Bang by smashing protons together. They don’t know exactly what will happen if they succeed … a contained Big Bang, maybe? Anyway, you shortened the name to Little Bang, so that one’s yours. I think it’s a very good name for our friend the Novalis Tx. It’s very comforting to me to think of Little Bang as an entity intent on heroically keeping the world of your body safe from the Alien. This is how myths develop. My current position is that I get to tell myself any comforting story as long as it doesn’t get me or somebody else into trouble. I feel that the Little Bang story is benign, so I’m sticking to it.
ReplyDeleteThe pictures are so great, Little Bang, Meshface, Sockfoot, Blankie, Infusion Room, View from the Window … They make me feel so much more a part of this experience. I suggest someone tippy-toe in and take a picture of you and Rudy in Dreamland. What a very good companion that Rudy is.
Just to be in sync with you, I stayed up till 3:00 AM the last couple of nights, so I’m tired, too. Sometimes Jackie and I feel we’re getting too old for this music-in-bars thing … But, we go right on with it anyway. Sometimes ya just gotta keep on going even if it seems too hard or too preposterous.
These are amazing times indeed. I, too, am so grateful for the successful protocol and for the very good prognosis. I wish you didn’t have to go through this. Since you do, I think you should give up the low-fat mayo. I’m for high fat all the way … just for now, of course. I realize you can’t completely ignore your arteries. Ah, the body is so complex with so much going on at once.
I am sending you love, my friend, and wishing you well with the big week you have ahead of you. Say hey to Little Bang for me. Tell her I said thanks. I always imagine that the Tx part of Novalis Tx stands for Texas and that its message to the Alien is: Don’t mess with Novalis Tx.
Perseverance is worth it. You are teaching me that. Thank you.