Off to Camp

Well, I had a feeling I needed a little bump of blood.  Tomorrow I'll have a blood transfusion, the first one in six weeks.  My hemoglobin was 7.9 (normal range is 12-14), not the lowest it's been, but low enough that I feel enervated.  I plan to use the time at Camp to catch up on my reading.  (I'm currently reading Reading Lolita in Tehran, by Azar Nafisi. It's an interesting account of how a group of Iranian women manage to explore the universal tenets of life and death through Western literature.  I find it fascinating and certainly relevant.)

My white count is also critically low, so I'll start an antibiotic prophylactically.  Not a big deal except that I must be vigilant about staying away from others to avoid infection.  If I must go somewhere, I should wear a mask.  Easy enough.  Generally, things are going fairly well, so I'm not gonna get too worked up about this.

I heart you, too...

I have known Maryetta since we were grade-schoolers.  We became best friends after I moved into her neighborhood when we were fifth-graders.  We were constant companions through the 8th grade, each willing to go to any lengths looking for adventure, sometimes known as trouble if you were to ask our parents.  Suffice it to say, we were no strangers to stern lectures and sometimes a grounding or two.  We remained good friends throughout high school, although each reached out to others, some of whom were BOYS.   We were less cozy in our college years -- she got married and started a family, I worked full time while attending school.  I also spent considerable time working on the long-distance relationship I had with my high school sweetheart who "went away to school" while I remained in my hometown of Mankato. 

I married my sweetheart, we moved to Wisconsin, then to Hawaii.  In the meantime, Maryetta and her husband, Mike, had relocated to Prior Lake, Minnesota.  We kept in touch, but it was spotty.  Then John and I (now with two children) returned to Mankato where we settled in.  Maryetta and Mike (with three kids) moved back to the area, moving a wonderful old house to a hilltop between LeSueur and St. Peter.  We were busy with our families (John and I added another child to the mix), but we found time to get together when we could.  Then, when our parenting duties lessened to a degree, we made more time for each other.  Some of our best conversations happened during the meals we had following weigh-ins at TOPS meetings.  Lest you judge our motives, I think we were perfectly aware of the irony of it all.  In fact, maybe we were in TOPS for the meal and conversation, weight loss not so much.  At any rate, we had morphed into the adult versions of our grade school selves.  Maybe we weren't getting into trouble anymore, but we might have if the opportunity for something irresistible had presented itself.

Soon, we began spending more time as couples.  The Dorns and McCartys.  Never a shortage of B.S.  Nor laughter.  Nor good food (especially when Maryetta was the cook).

Weddings and grandbabies became milestones we shared, with illness and death thrown in now and then to keep us grounded.  In time, our quartet became a sextet, when Pat and Dave Allen joined us in our valiant attempts to solve the world's problems over the finest cuisine one can imagine.  Pat was my and Maryetta's classmate; Dave was John's classmate.  Mike wasn't anyone's classmate, but the Iowa farm boy turned engineer can endear himself to anyone, classmate connections be damned.

So, now we are six, and Winnie-the-Pooh would approve of the hunny that is us.

But let me get back to Mike for a moment.  When I became ill, Mike wondered if perhaps my Bucket List didn't include a romantic liaison with him.  He assured me that he was willing to make that sacrifice.  Of course, his offer has become fodder for any number of jokes and jabs, which sends us all into fits of laughter at the thought.

Okay, with that backdrop, I take you now to last week when on Valentine's Day my purported paramour, my best friend's husband, one of the Gang of Six, Mike McCarty, really punk'd me!  I was minding my own business in Chemo Bay, just going with the flow, when a quartet of barbershoppers, recognizable by their outfits, entered the room, stopped at the desk and proceeded to gaze just a little too long in my direction.  I cast a worried look at John who shrugged and exclaimed, "It's not me.  Blame Mike!"  Three love songs later, my face matched the red rose presented to me as part of the deal.

Good one, Mike.  But this is as "Kinky" as it's gonna get...

"Yeah, you really got me now
You got me so I don't know what I'm doin, now
Oh yeah, you really got me now
You got me so I can't sleep at night"
The Kinks

Feb. 14, 2012

Chemo Bay

Mankato Clinic

The nurses and other patients loved being serenaded so it was all worth it.

No Rhyme, Some Reason

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.

Ariel.

Lovely, but fishy.

Grace.

I could use a little.

Camille.

Has a regal ring to it.

Hope.

Need lots of that.

Eliza.

No, my other granddaughters, Cora and Ruby, might object.

Kathleen.

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.

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.

Perfect.

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.

What's Cookin'...

Today, Tuesday, I completed my 5^th 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 8^th, 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

Addendum:

On Thursday it will be six weeks without a blood transfusion.  I haven't needed a platelet transfusion since February 2nd.  Hot damn! 

Black and Blue

Judging from the various sized bruises on my limbs, I was fairly confident I'd be needing a boost.  Sure enough, lab tests showed I was low in platelets, just borderline, but we thought it would be wise to fill 'er up with the weekend coming.  Destination: Camp Dracula.  My hemoglobin was borderline, too, but I don't feel drained of energy, so we opted to go without a transfusion.  The fewer transfusions I have, the better, because we reach the point of no return at a much slower pace.

In other news, I did get the results of the bone marrow biopsy.  Bottom line, the disease has not progressed, which is our treatment goal.  Our plan now is to stay with the status quo -- seven days of chemo once a month, transfusions as needed, preventive protocol regarding infections, bone marrow biopsy in another four months.

But, there is another wrinkle to be ironed out.  Backstory:  My oncologist, who is from India, went home for a visit in December.  While he was gone, a transplant surgeon from the University Hospital, Dr. McClune, subbed for him.  One of the first things he said was, "Why have you decided not to have a blood and marrow transplant?"  John and I looked at each other with incredulity.  What th'?  As you may recall from a previous post, I had pretty much decided that a transplant wasn't an option, although the door was left open a crack in case things changed.  Well, there have been some changes.  Most importantly, the disease is under control -- no fevers and fewer transfusions because of better blood counts.  I still don't know if a transplant is something I should pursue, but Dr. McClune made a good case for us to reexamine the possibility.  So, to that end, on February 8th, we will consult with a U of M transplant doctor.  In the meantime, three of my siblings have been tested to determine their eligibility to be donors.  We are still waiting for final considerations.  One of Dr. McClune's main contentions is that I have the most to gain from a transplant because without one I have the most to lose.  Life expectancy is minimal for a person with my type and stage of MDS.  So, it's a bit of a thorny issue.  Do I take my chances that my current chemo treatments will delay the onset of leukemia sufficiently so I can live another year, maybe two, relatively pain free?  Or, do I take my chances that a transplant MIGHT be successful, after a recuperation period of certain pain and struggle, increasing my longevity by a few more years--OR NOT.  It's a classic quality versus quantity dilemma.  My head spins with indecision at this point.  I feel a little like Linda Blair in "The Exorcist" -- without the green puke and a levitating bed. 

Anyway, after next Wednesday, I imagine we'll be able to make a more informed choice.  This will be the third opinion, after all.

On a lighter note, I do have a grandchild story to share.  Seven-year-old Kyle woke up his mom in the middle of the night recently, lamenting that he couldn't sleep because "I am all out of dreams and my eyes won't close."  He has quite a way with words.

May you never run out of dreams.