I have kept wondering, over the past 7 weeks or so, WHEN will this cancer thing seem real? I mean, not that I’m NOT sick or anything, but sometimes when something is so life changing, it just doesn’t seem to sink in, doesn’t seem 100% real.
I figured I’d keep wandering around in a semi-fog, achieving moments of clarity as pieces of the lymphoma puzzle came together, until at last there’d be some kind of crystal clear reckoning when things fitted together and made perfect sense.
THAT hasn’t happened. Some things are just as foggy as they have been, some things seem clearer, but suddenly the whole mess feels REAL.
The pain so far’s been real; the pain my body shoots at me through the tumors (large and small) and the other internal indignities that present themselves as recurring pricks of pain or deep seated aches.
I’m learning to deal with the pain, to figure out how to avoid it, or to meet it head on, or perhaps to sidle along beside it, dealing with it quietly, so it doesn’t even know I’m there. Shhhhhh.
There’s also pain that comes from outside my body, the needle pokes, the sticks, the punctures. AND THEN there are the shakes, hunger pains & mental anguish which are hallmarks of Dex.
Every human body deals with Dexamethasone (a powerful steroid) in it’s own way, but it’s been one of my hardest battles; Dex entirely changes my personality, turning me into a raging, raving, hungry, incomprehensible ball of pure emotion. At the start of this trip, I was on a double dose of Dex and I thought I’d end up in federal prison instead of a hospital.
Heaven help my family, they’ve been amazing
in dealing with me and the Dex, I wish I were as gracious.
The fear has certainly been real. Like anyone facing a serious cancer (is there a cancer that is NOT serious? What a silly phrase that was…) I have had my middle-of-the-night sitting-up-straight-in-bed PURE FEAR sessions.
Death is a fear every human has to face, no one gets out of this life alive.
But when you feel your time is shorter than you had anticipated, it brings up a great deal of unfinished business. There can be lots of baggage, and cancer has a way of leaving those bags in the foyer of your brain where you can trip over them at 3am.
But what makes the cancer seem suddenly VERY REAL is that I have a date that my chemo is supposed to begin at the Mayo, and it’s this coming Tuesday. We got the call today from Dr. T, I’ll drive down with Andy on Tues morning (not too early, thank heaven!) and start the pre-chemo labs.
Then I’ll be admitted to Methodist hospital where I’ll receive the cocktail of drugs that will be VERY rough. The way Dr. T described it, the chemo will really kick my butt, and I’ll be in such bad shape that they won’t be able to release me from the hospital until they’re certain that I WILL RECOVER from the chemo infusion.
She drew me a picture. Two in fact. And I did NOT promise not to show them here.
I actually found them charming and helpful, and I don’t know that any doctor’s ever drawn me a picture before.
The first image is me, a side view, showing my spine and explaining why it’s necessary for me to continue to receive chemo directly into my spine. Hint: It’s where the CANCER IS.
The second image is also me, looking rather like a gingerbread woman, showing how the Methotrexate will kill the cancer, but will also try to kill ANYTHING ELSE in it’s path.
Because my tumors seem to REALLY like my spine and brain, Big-M (which is what I’m calling Methotrexate) is the best medicine to treat them. But it’s a dangerous med, and needs to be controlled.
This image demonstrates how Dr. T. will fight off the bad side effects of Big-M and until that is under control, I’ll be monitored at Methodist.
An extra bonus is that during my time at Methodist I’ll probably be overseen, at least a little bit, by Gerry’s hematologist, Dr. H, who has become a good family friend. I almost feel as though I’ll be with family, and that feels amazing.
So I’m scared. I remember how hard this was for Gerry when he had the high dose chemo, and I’m wondering if it will be as bad for me as it was for him.
But I’m also cool with being scared, it’s part of this whole trip, and I’m feeling strong enough to get through this. Hopefully in one piece.
The chemo I had two weeks ago here at St. John’s in Maplewood was called R-EPOCH (not R-CHOP, as I previously mistakenly said)
It was a 5-day infusion that I carried around with me in a bag type mechanism that pumped the chemo into my chest for four full days, Tues through Friday. I didn’t really get very ill, the anti nausea meds were great, and it wasn’t until the following week that I suffered the exhaustion and mouth sores that came with R-EPOCH.
This chemo that I’ll be getting at Mayo is called CODOX=M/IVAC, and although it has similarities to R-EPOCH, it’s an entirely different beast. I wish I knew what that alphabet soup of a name actually meant, but what I DO know is the M=”Big M”=Methotrexate and the IVAC means I get more needles inserted into my spine. Huzzah.
But, it’s an important step in getting this cancer OUT of my spine, so I’ll not complain!
Okay, maybe I will complain just a bit. Andy can give you all the gory details of my complaining when this adventure is finished.
Folks have been asking, “If you have Lymphoma, why do you have all these tumors in your spine and back and neck? Isn’t Lymphoma a blood cancer?”
Yes, that’s true, I have a blood cancer. I’ve been told by my docs that lymphoma is a cancer that can produce some amazing tumors, and I’m one of the lucky folks who seems to have a very fertile ground within my nervous system to grow these tumors. Why that is, I don’t know. But getting rid of the tumors is a large part of my treatment.
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 Methodist, but need to stay down in Rochester.)
I honestly believe that if there had not been the AMAZING response to the GoFundMe to raise money for our accommodation in Rochester, this chemo would NOT be happening.
Thank you to everyone who helped out along the way, I am VERY grateful to each of you! You have made a huge difference in my recovery.
And now I will go nap. My exhaustion has taken over my days and my nights, I slip into sleep so easily I barely even know whether I’m awake at any given time. I’m certain it’s because I’ve been keeping a pretty rough schedule the past few days. Who knows?
Maybe my days at Methodist on CODOX=M/IVAC will be just the rest cure I need..?
Or maybe I’ll just bake something at 3am.