Serenity

It's a wonderful day.  My friend Maryetta paid me a visit.  Although we had talked regularly on the phone, we realized we hadn't seen each other in at least two months, perhaps longer.  It's snowing lightly, giving the drab landscape a bit of a make-over.  I have the whole rest of the day to work on my sewing projects.  Chili and cornbread is already made for tonight's supper (actually they're leftovers from last night's supper--I expect the chili to be even better tonight!).  I'm at peace.

I recently received a heart-warming email from a dear fiend who also happens to be a former student.  In one of my earlier blog entries, I mentioned that I wanted to tell you about a remarkable person in my life.  I never got around to doing it, but now seems like the right time.

I first met Susie when she was transferred to my 7th grade reading class from a regular English class.  She captured my attention from the beginning.  First, she didn't seem at all unhappy about the transfer, unlike most of the others who viewed the placement as punishment.  Second, she wasn't afraid to engage and express thoughts and ideas with little concern about what the others might think.  It was clear she had already learned enough from the school of hard knocks to know that being true to yourself was more valuable than worrying about how you might fit in.  I came to admire her spunk.

School wasn't easy for Susie.  She was smart enough, but there were distractions.  By the time the school year ended, she was invited to attend summer school so she could pass to the next grade.  The invitation was accepted.

By this time, I had decided I would like to be her mentor, help her get through summer school, and just be an adult friend to her.  We agreed (parental permission was granted) that I would pick her up from school a couple of times a week for tutoring.  That's what we called it, tutoring, but it was more like hanging out.  Yes, we spent some time doing schoolwork, but more time just being friends.  We had lunch (often), we talked about Important Stuff, we shared story ideas (her mind was full of wonderful stories just waiting to be written down), we acted silly (one day the lesson took place at a county park with a swimming beach and before it was time to leave we dared each other to jump in the lake clothes and all--we did and we thought we were hilarious).  She became like a daughter to me and was quickly assimilated into the family.  We all loved Susie.  For years I referred to her as my little friend.  She just had a birthday and is now in her mid-twenties so I guess I can now refer to her as my friend, my dear friend.

There are so many things that have endeared Susie to me over the years other than being the one student who didn't think my class sucked.  Among them are her easy laugh, her vivid imagination, and her proclivity to all things artistic.  One memory I have of her that makes me smile every time I think of it is the day I picked her up in the school office for one of our tutoring sessions.  She was waiting for me as usual, except for one unusual difference: Susie was wearing a glove on one hand.  Curious, I looked more closely at the lacy item and saw that it wasn't a glove at all, but a representation of a glove.  Susie had spent the previous morning and this particular morning drawing an exquisite rendering of a glove on her hand.  I was blown away by its intricacy.  After asking her to explain how in the world she was able to get away with this in class (she wasn't sure), I was compelled to show her masterpiece to the school secretary who was duly impressed.  We then stopped at my house so I could show it to my family members.  In retrospect, I can see that this was just another instance of my nurturing the arts above other pursuits.  But, you should have seen it!

Eventually, the ink wore off and I never saw her sporting another glove.  Summer school ended; she switched to an alternative school and eventually moved to Texas to be with her mother while she finished high school.  We corresponded irregularly, but continued to make the effort to remain friends.  When she moved back to Mankato we resumed the friendship although by this time she had work and a boyfriend to keep her busy.

Now our get-togethers involve not just Susie, but also Nate.  She always expressed a desire to go to college and major in theater (she did actually write a play which was performed at her high school in Texas--she gave me a copy of it and it's wonderful), but times are tough.  I'm hoping that someday she'll be able to fulfill that dream if she still wants to.  In the meantime, she's involved with community theater and doing some writing.  She will always hold a special place in my heart.

In her email to me, she sent along this poem she wrote in response to my butterfly poem...

Untitled

By Susie

A butterfly can't fly
if you do the work for him.
It has to go through some struggles
if it wants to feel the wind.
 

In this world there is trouble,
there is joy and there is pain.

You can't appreciate the sunshine
if you don't walk through the rain.
 

I know you want to help him
but my dear you must refrain
'cause a butterfly can't fly
unless it struggles for its wings.

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.

Still Waiting

Just a short  update...

Blood counts were acceptable, so I still don't need transfusions.  Oh, happy day!  Dr. Kumar had not yet received the biopsy report from Rochester, so I must be a patient patient while I await the results.  Patience is a virtue I've been told, so I guess we'll just put that adage to the test.  My next clinic appointment is Thursday by which time I should know.  If you've been keeping your fingers crossed, give 'em a little rest, and then back at it in the morning.  Thanks.  I'll keep you posted. Love you.

Hip-hip-hooray!

I'm not very hip, but I do have hips and one of them is sore.  The  biopsy went just fine today; the wost part was lying still for at least a half hour while my arms and hands got numb and number. Because lidocaine is injected into the site, the pain is actually minimal during the procedure.

We won't know the results of the biopsy until Monday.  The samples must be interpreted by technicians at Mayo in Rochester.  It's a bit unsettling to have to wait, but we are hopeful.  Today's numbers remained respectable, although both the hemoglobin and platelets were lower than on Monday.  The white count is still low, but at least stable.  The bottom line is that I do not need any transfusions this week and that is good news.

Oh--I feel better now that my hair got some attention.  Do you remember that scene in "O, Brother, Where Art Thou?", one of my all time favorite movies, where George Clooney's character reacts to a fire in the barn in which he is sleeping?  He wakes up suddenly and with a wonderfully stricken look, raises a hand to his heavily pomaded hair and remarks, "My hair, my hair!"  I can relate.

We'll keep you posted.  In the meantime, we wish you all the best.

Dear Diary

 January 24, 2012

When I was young, I desperately wanted to record my pubescent escapades in a special faux leather diary, probably green with gold embellishments, which could be LOCKED with a special tiny key, assuring that the prying eyes of nosy parents or siblings would never rest on my brilliant accounts of said escapades. It never happened. Oh, I did own a diary or two back in the day and I still have a couple of those tiny keys languishing in my jewelry box. Since I have no recollection of ever getting rid of the little books, I hang onto the keys just in case one of the tomes shows up in some unlikely place.

Sadly, if I ever did recover a diary, I'd be disappointed. I was not good at diary writing then and I'm not good now. Here's how it usually went:

Dear Diary, (OK, to whom am I writing? To myself? Girlfriends who will most likely insist upon reading my private thoughts? My parents who won't be able to help themselves when I leave it lying around? My brothers and sisters seeking payback? Oh God, do I need to choose an audience? OK, I choose the diary itself, an inanimate object, a non-judgmental entity. Oh, who am I kidding? Everyone will want to read this stupid thing. Now I can't write anything, at least not anything of any importance.)

I went skating tonight. It was freezing cold. My friend told me there were a lot of cute boys at the rink. I didn't notice. All I can say is that I was able to get my hat back when it was time to go home. (Too vague? Good.) Nothing happened today. I went to school, came home, did some of my homework, kicked my sister out of our bedroom so I could write to you, and now I am going to get ready for bed. Night-night, diary. More tomorrow.

Your friend,

Kathy

Bor-ing! And that's my problem with diaries, journals--and now blogs.

At the outset of this blogging venture, I was sure I'd be able to contribute a few thoughts on a consistent basis, if not daily, at least weekly. But here's what happened: My life got boring and I've never been more grateful!

Since my last entry on December 7, I've been leading a relatively quiet, uneventful, and stable life. Oh happy me. Really!  Except for a recent hospital stay because of diverticulitis, unrelated to my cancer, I almost feel normal (a new normal, I suppose, to use the current overworked vernacular--which brings me to a couple of other tired phrases of the day: at the end of the day and kick the can down the road – aaackkk!). For almost two months I've been fever free and have required fewer transfusions. I finished the last dose of my fourth round of chemo today on a high note—hemoglobin is almost in the normal range, platelets are as high as they've been in a long while (just 4 points shy of being in the normal range last week, this week down some, but still encouraging). My white blood cell count is still too low for me to be much of a gadfly. I don't get out and about much and don't have too many visitors either which is kind of tiresome. Can't risk exposure to infections. But, I've been able to catch up on some reading and my favorite pastime, sewing. My latest project was a leotard and tutu for my granddaughter Cora's 18 inch doll, an American Girl knockoff. Cora turned five in early January, but I wasn't able to get to her birthday party so she, her mom and younger sister came to Mankato yesterday (Daddy had to work). She loved her doll's outfit as well as her matching leotard and tutu. Lots of dancing took place around here yesterday afternoon. Later, the North Mankato cousins and their parents joined us for supper. At the end of the day, a good time was had by all.

Tomorrow I'll get help with my hair. It's not coming out in clumps, but it is thinning. I can deal with it, but it is one aspect of this journey that I stew about. I've always said I wouldn't wear a wig, but maybe I'll reconsider. I'd only invest in a good wig, one that looks real, fits well and is lightweight. I'm willing to part with a good chunk of cash if I find one that meets those requirements. In the meantime, my hairdresser will do her best to make me look presentable. Ah vanity, thy name is Kathy.

Thursday will be a day of reckoning. I am scheduled for a bone marrow biopsy to determine how well the chemo is working to delay the onset of leukemia. My blood numbers tell one story, but a biopsy seals the deal. I am cautiously optimistic. Are we kicking that can down the road?

If you're still reading this, congratulations. Boring stuff, but damn hopeful. Thanks for being my friend, dear diary.

And thank you, dear friends and family, for all of your love and support.  I know I'm lucky to have you on my side.