So imagine my joy when, on Friday, Ellyn confessed to me that she’d booked a flight out to St. Paul and would be staying the weekend!! She also booked into an Air BnB, but – luckily – her host contacted her on Sat morning to tell her that she’d have to cancel the reservation, so Ellyn was free to stay here, in Max’s room!
It’s been SUCH a lovely weekend. A lovely, silly, boring, wonderful weekend! I’m not able to do much, and this weekend my exhaustion and nausea levels were pretty high, but Ellyn was cool with just SITTING on the sofa and watching cooking shows while we giggled and ate ice cream with Baileys.
It seems that the cancer is now in my bone marrow, and that’s not good. Yesterday, instead of getting the spinal tap I usually get (little did I ever think that the words “usually” and “spinal tap” would be used in a sentence involving my health) I was told to just stay home. My doctor is ‘regrouping’ and I’ll be seeing someone (Doctor? Nurse Practitioner?) on Monday to discuss the route forward for my treatment.
It would be ironic if, after all of the Mayo drama of the past week, I ended up receiving the same chemo cocktail that Dr. T was proposing, but via a different clinic up here (the University or Park Nicolette) Maybe ironic isn’t the word.
The Mayo doctor showed me on Tuesday that the cancer is in my bone marrow, which is a new development. I knew that it was in my nervous system (another shock from last week), which is why the CODOX=M/IVAC cocktail was supposed to be so perfect for my cancer.
Since the pre-auth didn’t come through, I’ll be getting the R-EPOCH chemo that was already started up at Health East, but which may not be as strong as required.
We all have our list of goals—not exactly a ‘bucket list’—but things that we need to accomplish to enrich our lives. I can feel in my soul, and in my bones, how many things I have left undone in my life. Each of those undone things is the seed of a goal.
The five goals I’ve listed above are my Top 5. They’re the immediate things that I want to accomplish to make my life richer and fuller. This, I would argue, is exactly the reason I’m undergoing the Chemo tomorrow; to achieve these goals.
Of course I have fear about the Mayo procedure this week; it’s supposed to be a rather rough chemo, hard on the body, harder on the soul. For what it’s worth, I feel that I’m as prepared as I can be for this next step. But in reality, I don’t know how prepared I can actually be.
I’m not an oncologist, and I’m not reading as much about this cancer as I probably should. I know many folks facing an illness like this prepare themselves with education, that was Gerry’s way of dealing with Multiple Myeloma. But I am lazier than that, and I know that my comprehension of the disease will probably have no material impact on what my doctors choose to do. I’d rather spend that time reading a novel, knitting or watching some cooking show. Or baking.
So this weekend I’ll get myself square away, packed up, ready to head down to Mayo. Andy’s booked into Days Inn (next to Methodist) and then later in the week she’ll move to the Staybridge Suites (a better choice for us when I’m released from Methodistl, but need to stay down in Rochester.)
Aside from my appointment today, and some yarn wringing out that I’m going to wrangle Andy into doing for me, today is a REST day. No walking, no trips, nothing but sitting on my butt, knitting, watching some TV and RESTING.
With two doctor visits and the support group, I was absolutely SHATTERED with exhaustion yesterday, today is Resting Wednesday.
Thank you. It took me SO long to learn how to say those words. MUSIC MAN I remember high school as years of pain, I was the poster child for “outcast” and ate my lunch just about every day up on the stage in the auditorium, surrounded by paint buckets and canvas flats, usually alone,…
We met with Dr. T* from the Mayo’s Hematology Department, who had been referred to us by Dr. H, Gerry’s OWN Hematologist for the past 12 years. Because Multiple Myeloma (Gerry’s disease) like Lymphoma (my disease) are BLOOD cancers, they’re both treated within the Hematology Dept.
Dr T’s demeanor and presence were so comforting, so immediately soothing and so full of — LOVE — that it sort of took Gerry and my breath away. Although she feels that the protocol I’m on is good, she feels that a stronger, more intensive chemo MAY be of use to me, and it’s a cocktail I can only get at Mayo. So it looks like I’ll be getting my chemo at Mayo.
As scary and overwhelming as the word CANCER is, it’s far LESS terrifying than the abject fear that I would NEVER feel any better than I did last November. The diagnosis of Cancer has given me a bit of hope, and that’s worth gold.
THIS is why I feel lucky. I feel that I’ve been given a chance to see the horizon, where before the diagnosis it was just a foggy bank of pain over in the distance. Now I have a direction where I can look, and dream.
Today is a pure exhaustion day. It’s 9:17, I’ve been up and down since 2am (hip pain makes it hard to stay level, so I’m up, then down, then up, etc. You get it…) I just walked to the dining room, moved a very small watermelon to the kitchen, cut it open, chopped 1/4 of…