A Poem By Any Other Name
By Kathleen Dorn
I want to choose it by its name,
The way I choose a horse in the Derby.
Lovely, but fishy.
I could use a little.
Has a regal ring to it.
Need lots of that.
No, my other granddaughters, Cora and Ruby, might object.
Well, that's not very original!
Elizabeth or Anne.
Very sisterly. Betsy would approve, but would Ann, Ann without an e?
Natalie. Olivia. Kiera. Naomi. Maggie.
Maybe. A tribute to my Irish roots?
No, not Maggie. Johannah!
After my great-great grandmother, Johannah Donovan Sullivan. My Irish roots.
No Johannah? Then I'll choose Kathleen.
Kathleen. Page 22. “Looks just like your own hair. Comes in Brown with Red Highlights.”
When it's time.
When chemo and radiation ravage this Kathleen's Irish roots.
Irish eyes are smiling.
*These are real names of wigs from a real ACS catalogue which I picked up in the oncology waiting room on Monday. It amuses me. All of the models wearing the wigs are adorable and don't look at all sick.
Today, Tuesday, I completed my 5th round of treatment. It went without a hitch, if you don't count a week-end bout of what may or may not have been diverticulitis, which prevented me from spending time on Saturday with my quilting buddies who were on retreat in Sleepy Eye and my beloved in-laws, Pat and Dave Dorn, with whom we had planned to rendezvous on Sunday in Owatonna, to bid them a fond farewell before they left for Palm Desert. But by Monday the worst had passed (literally) and it's all good.
Tomorrow is a day off. Well, sort of. No clinic visit, true, but lots of medical business to take care of at home.
Long story somewhat shorter: I have decided to have a stem cell transplant at the U of M. Prior to our visit with Dr. Weisdorf on February 8th, I had learned that my youngest sibling, Rob, was a perfect match and, more importantly, willing and able to be my donor. I sat on this information until I could process whatever information Dr. Weisdorf dispensed. While much of what I heard was not new – the process, the risks, the pain, the struggle – I came away from the consultation believing that hope wasn't an illusion. I left thinking, OK, so there's only a 30% success rate. I could be in that 30%. And if I'm not, well, I tried.
A few deciding factors: Dr. Weisdorf has 30 years of transplant experience. He reiterated Dr. McClune's assertion that because I am a high risk patient, I have the most to lose by not having a transplant and the most to gain by having one. We learned that the U of M has more experience than Mayo with higher risk transplants (although I could have chosen Mayo) because Mayo is more cautious in its approach, an assertion affirmed just this week by a visiting oncologist who currently is not connected to either Mayo or the U. Although Mayo trained, he encouraged us to go with the U.
The decision has been made, but there is much to do. Logisitically, it's daunting. The first task was to connect with the transplant coordinator who will be our go-to guy with any and all questions we may have. I visited with him by phone today and he impressed me with his patience, kindness and humanity. John has had several conversations with him and concurs.
One of the most difficult tasks is pinpointing when the transplant will take place. Rob lives in Anchorage and can't just pick up and leave on short notice. Plus, he's married, has a dog, and, oh yeah, a JOB! This ordeal is not just about me; plenty of others, most particularly my little brother, are being called upon to make their own sacrifices.
As of now, we think this could happen in May but there are many things to consider. In fact, the transplant could be called off before it even begins. Dr. Weisdorf and Dr. Kumar, my regular oncologist, must cooperatively agree on when they think might be the best time for it. When the time comes, Rob needs to have a work-up, I need to have a work-up. If we both pass, I would start mega doses of radiation and chemo; he would start growth hormone injections. The next step is to collect Rob's cells through a process much like what happens when one donates blood for the Red Cross. Then the cells I need are transfused into me. All told, from work-up to transfusion, it takes about a week and a half.
Then comes the hard work: Surviving.
And eventually getting to point where I can put Kathleen the wig on Kathleen the bald-headed babe.
In future blog entries, I'll include websites for you to explore if you want more specific information about stem cell transplants and the aftermath. For now, if I haven't already bored the crap out of you, I think I've given you the down and dirty of the early stage.
As I mentioned in a previous blog entry, three of my siblings were tested: Betsy, John, and Rob. I am forever grateful to them and love them for their act of supreme selflessness. Rob was the only perfect match, but that does not diminish the others' efforts. I must mention that my other siblings, Ann and Tom, were willing, but because of their own health challenges were unable to consider donation. I thank them also for their continued love and support. It is said that you don't know what you've got 'til it's gone. I DO know—before I'm gone. How will I ever be able to thank them for having my back? (Oops! I bet I get a request or two for new wheels or trips to exotic places. If I could, I would, My. Dear. Beloved. Sibs.)
One thing I can and must do is prepare myself physically, mentally and spiritually to the best of my ability. Because my disease still limits me physically, I must be creative in that department. I keep a set of weights (only 3 lbs) by my recliner so I can do reps several times a day. I do what I call “Island Strolls” around our kitchen island, at least once a day, hoping to work up to at least 3 times a day, increasing the amount of minutes per time. I imagine a real island paradise as I walk. I plan to find some “island” music to keep me motivated. Any suggestions are welcome. Right now, all I can think of is “Tiny Bubbles” sung by Don Ho (whom we saw at a club when we lived in Hawaii) or “Mele Kalikimaka” sung by Bing Crosby. But wait, “Islands in the Stream”...
Anyway, you get the drift (she said woodenly).
It's getting late and I must rest. And so must you after enduring this epistolary epic.
I love you and cherish your friendship.
~Kathleen Birk Ann Ruddy Dorn
On Thursday it will be six weeks without a blood transfusion. I haven't needed a platelet transfusion since February 2nd. Hot damn!