Wednesday, May 16, 2012

Hi...we have moved

Hi everyone!  Just in case you've checked in here, I want to let you know that you can find all of the up-to-date information on my mom on her CaringBridge site.  Just click here to be taken to all the news that's fit to print. 

Sunday, April 22, 2012

Some updates

Hi there.  Rebekah Here.  Just in case you're not following my mom's CaringBridge site, here's the most up-to-date information: 

from 4/20:
Another Plan Bites The Dust
Greetings From John--

The long and winding, bumpy road diverged in a yellow wood and we chose the go-to-the-hospital-today path, which led to an inspection of a slightly sore, slightly itchy right forearm that triggered a diagnosis of infection which means ten days (starting now) of antibiotics (Kathy will once again be an out-patient starting tomorrow). 

If you are saying "Whew" you are close to catching my drift.  We have had more plans than there are versions of the Vikings Stadium Bill.

My initial speculation is that the Drs. may go ahead with Rob's 5 days of blood fertilizer shots and then spin the stem cells and put them in the freezer for the transplant day, which now appears to be 17 days away.

Kathy is grateful that the problem was discovered before a full-blown fever materialized, and, come to think of it, so am I.

Be well.   
 
from 4/21:
 
Bah humbug
Hey all....Bekah here.  I just got off the phone with my dad.  Mom developed a fever last night, so he stayed with her in the hospital.  He got some sleep, but they're both tired.  In his words, fever nights are hard.  Apparently, though, the doctors are taking care of business, and he expects everything will move forward as planned for Rob's part in all of this.

Thank you for your continued prayers, thoughts, well-wishes.  It means the world to us.

Bekah
Today is an Other Day
Here's some more from my dad:

"Oh bother! thought Pooh.
"Some days are Better than others, and this is the Other Kind."

During the night, Kathy's fever worsened.  She was at 104.3 at one point.

By mid-morning  it worked its way down to 101, but  it's creeping back up this afternoon.

Her blood pressure has been low also--90/40 range.  Again, it crept up early this afternoon--105/45 maybe--but it's a bit lower now.

I'd say her greatest discomfort are her legs--they ache a lot and there seems to be little relief.


She was given two pints of blood, an ultrasound on her arm, a chest x-ray, several bags of assorted treatments and some pills. 

She is tired but always manages to exchange brief pleasantries with the nurses.

I'm going back soon, and plan to spend the night again.

Thank you for caring.  This too shall pass.

John
 
And from today (4/22):
 
Mom's fever is better - closer to 101 than 104.  Her blood pressure is better - hovering around the normal range.  Her leg pain seems to continue to the point where she can't really stand on it.  But she makes do.
 
As usual, thanks for the continued support.
 
Bekah 

Wednesday, April 18, 2012

Say What?

OK, I went searching for a good quote to sum up my attitude about the fluidity of scheduling changes occurring nearly hour by hour around here.  Instead, I found a great one that sums up how I SHOULD feel and I'm going with it.

“Life is a series of natural and spontaneous changes. Don't resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.”
~Lao Tzu
So here's the deal...
We heard from the nurse coordinator today who said I could be admitted to the hospital tomorrow.  We were just getting used to having some down time and were planning how we could spend a few days unshackled by all things cancer.  A few choices:  Arboretum, Zoo, movie matinee, walks around one or more of the lakes.  So, OK, we'll change our plans.  We can look forward to doing those things and more when I'm recovering.

But wait--we received another call a little while later telling us that I can't be admitted until Friday. This seems to be their Final Answer.  If it changes, we'll let you know, but we're planning on Friday.
Rob went with fresh over frozen so he's on his way back to the lodge.  We assume he'll start his growth factor shots on Friday.

In the meantime, we going to try visiting our son at Cause, a bar and live music venue, where he is head sound tech.  Haven't reached him yet, but he usually works on Wednesdays.  Then tomorrow, depending on the weather, we will try to get to the Arboretum.  

We have met some wonderful people here (John calls it the Resort; I call it the Home) who are in various stages of treatment  for various types of cancer.  There are quite a few people who are recovering from blood and marrow or stem cell transplants.  I am an inveterate people watcher, some might say voyeur, and there is no dearth of opportunity here.  But what I love the most is hearing their stories: what their disease is, where they're from, how long they've been here, how they cope, their families, their interests, their lives before cancer.  Smiles and friendly greetings are abundant.  If one wanted to be grumpy, one would find it difficult to accomplish when the energy/synergy of the place is so doggone sunshiney.  How can you HARRUMPH when a woman wearing a brightly colored scarf on her barely disguised bald head reminds you that there are caramel rolls made fresh that morning by a woman who has had a laryngectomy.  I mean, the positivity is positively positive, of that I'm positive!

Today John and I took a little ride down Grand Avenue in St. Paul.  There's a little fair trade boutique called Coat of Many Colors that I used to like to visit in the Macalaster College neighborhood.  The store didn't have much inventory today, but I did manage to buy a couple of trinkets for old times sake.  Then we had lunch at a tiny shishkebab place in the same neighborhood.  We both love the ambiance of a college campus which is what we also like about being at the U.  We're small town folks who like a taste of the big city now and then.


Oh, I had a funny thought today.  I was sitting in the common lunch area when a group of high school girls in their cute little plaid uniforms (and way shorter than we girls at Good Counsel were allowed to wear our uniforms which were definitely not cute in any way -- I briefly wondered what they would do if I measured their skirts from hem to floor like the nuns did to us) marched in and took their places at some tables for some kind of volunteer card making service project.  I speculated that the old men wandering into the lunchroom--namely one John Dorn--would think they had died and gone to heaven!

Time to sign off, but first, while I was searching for a good quote about change, I found this one, not really about change, but noteworthy nonetheless:
 

“One day your life will flash before your eyes. Make sure it’s worth watching.” ~Unknown 

I would add that the life one leads should include following one's passions, like driving around the state looking for water towers.  Our grandson, Kyle, had such a passion last year, so Grandma and Grandpa indulged him by chauffeuring him from town to town finding and photographing the structures, which we found out are greatly diverse in size and shape with interesting logos.
Kyle really wanted to visit the village of Butternut because he liked its name.  Butt-er-nut, with the emphasis on the first syllable when you are a seven-year-old boy.  We had never actually been to Butternut, so let's go!  Well, as I recall, all it is is a house, maybe a grain elevator and some abandoned buildings.  No water tower.  But then we saw this little replica, yard art really, on the property where the only house stood.  It was a big day for tiny things!
  

Tuesday, April 17, 2012

Hurry Up and Wait

Hey, I've got nothin' but time, so I can't complain.  I'll concede, however, to being disappointed when we were told today that I can't be admitted to the hospital to start the process--which, by the way, is a BIG FAT GO--until next week because there were so many "closings" recently (sounds like real estate instead of medicine) and the BMT Unit is full.  I guess I'm first on the list and will be called when an opening occurs.  Now Rob can either get his growth factor shots and  donate his cells according to the original timetable (his stem cells can be frozen until I need them, although that isn't the U's usual protocol -- I was assured that, although some frozen cells will likely die in the thawing process, previously frozen cells are just as viable as "fresh" cells) or he can stay in MN longer in order to donate the cells at the same time I need them.  Rob's got plenty of time coming to him at work, but I hate to see him have to hang around when they say frozen will do.  Plus he and his wife have a dog who's staying with a friend and they didn't want to be away from her too long.  We'll get it all sorted out.  At first I was a little upset about this new turn of events, but in mulling it over, I realized it's no biggie.  In my lifetime, I've been someone who gets my panties in a knot over the small stuff, but am not too fazed by ginormous challenges.  Go figure!  I'm learning.

So...looks like next week sometime will be when it starts for me.  My job is to stay healthy until then.  I'm going to continue to stay at the Hope Lodge, instead of going home, because the environment is really so controlled, and if I did pick up something, I'd like to be cared for at the U.

I wish I had brought my sewing machine with me.  I probably could be halfway through a quilt by now.  Wah, wah, wah!

Now I probably have time to commit a crime, say bank robbery, because after the transplant I can pin it on Rob.  I find it fascinating that I will have his DNA afterwards.  We've made many jokes about that, naturally--one can never tire of those sibling jokes at one sibling's expense.

Speaking of my baby brother the Bank Robber, here's a photo of him with me and my younger sister, Betsy, taken last week at the Lodge.


Also, here are some photos taken at the Ruddy gathering last week, courtesy of Betsy's husband, Pete.

Me and my quasi-twin brother, Tom. 
If Rob will agree to shave his head, then Tom, Rob and I can be quasi-triplets!

Tom and I do have a connection besides bald heads and ample flesh.  He's had my right kidney since 1996.  I was a perfect match for him.  I found out today that since Rob was a perfect match for me, Rob and Tom would be perfect matches to each other as well.  It's a little Ruddy syllogism.  Well, isn't that special!





Here's my other brother, John, trying out my wig.  Some of us were reminded of Robin Williams (only not quite as hilarious).






                                     
Missing was my older sister, Ann, who would have loved to be here with her brothers and sisters.

We missed you, Ann Rae!


Love to all of you.  I'll keep you posted.

Monday, April 16, 2012

Hi, I'm jacking this site.

Hey folks.  Rebekah here.  I've hi-jacked my mom's blog (with her blessing) to say a few words. 

I. love. my. mom.

There.  I said it.  The few words that mean so much to me.

I've had the pleasure of being able to spend some time with my mom over the past week.  I've missed that.  She's my rock and a dear friend.  Whenever we get together, laughter abounds.  I used to spend a lot of time with her.  But over the years, my own family obligations (and then her health) made it more difficult.  It's not like we live that far apart (Mankato to Apple Valley is quite a do-able distance), but life just gets in the way.  I would get oh-so-jealous when I'd hear about my sister's pop-in visits with Mom and Dad.  So I feel a little special that they are now in my backyard and that I got to spend this time with her before she becomes unavailable.  And I'm glad my kids got to come along on those visits so they could spend some quality time with Grandma and make those memories.

As mom mentioned in her previous post, one of our outings involved me taking pictures of her.  She looks fabulous - with hair and without.  Cora, my oldest, sure gets a kick out of Grandma's bald head.  It makes her laugh a big hearty belly laugh every time.  Ruby's not so sure about it (she's told Grandma on more than one occasion to put her head back on), but she loves the hats Grandma has.

Anyway, I wanted to share some of the photos with you all.   Enjoy!

Love, Rebekah







Saturday, April 14, 2012

The Lodge

Our vacation at the Lodge is fabulous.  Wish you were here!
No kidding, that's a bit how it feels at the Hope Lodge.  This  morning I went down to the community lunchroom expecting to have my usual bowl of cereal, but instead discovered that a Relay for Life team was serving breakfast.  Lots of fruit, baked egg dishes, bagels, oj, and coffee.  On two nights this past week, church groups served us supperA shuttle bus takes to and from all of our appointments.  There are lounges with TVs, an exercise room (which I've used), free laundry facilities.  All of this is at no charge to the guest (me) and caregiver.  It blows me away!

The rooms are small, but adequate.  It's quiet on the floor, so sleep comes easy, usually.  

The past week, I've had every test one might imagine: blood panel, urine analysis (sidebar:  I needed to provide a 24 hour catch and the nurse gave John the job of carrying my jug around, denoting him my Pee Sherpa--he did  it well); heart scan, EKG, CT scan, chest X-ray, bone marrow biopsy.

My donor, brother Rob, had his work up on Thursday, which took a lot longer than anticipated because he ran into what we are at this point classifying as a minor glitch.  His platelet count was a tiny bit below the normal range.  After reaching a couple of his doctors in Anchorage to find out what previous blood tests revealed, the doc at the U thought he should have a bone marrow biopsy just to rule out any potential whatevers.  It doesn't seem to be too problematic--his other tests showed a lower count, but within the normal range.

My EKG showed an abnormality, so I consulted with a cardiologist yesterday who didn't seem too concerned, but scheduled a stress test for me on Monday just to be on the safe side.  It will be a recumbent bike stress test.

Tuesday is the day I find out from my team leader, Dr. Vercillotti, whether or not the transplant is a go.  If not, then I'm sure we'll discuss options.  If it is, then I'll be admitted to the hospital on Wednesday or Thursday where I'll be fitted for another "line" which will be inserted into my carotid artery.  My port won't be used as much.  Chemo, as well as a myriad of other meds, will begin shortly thereafter.  Whole body radiation will be administered next.  In the meantime, Rob will receive injections of neupogen to stimulate cell growth.  When that's done, we're ready to roll.  They extract blood from Rob, spin it in an apheresis machine to extract the stem cells, and then return the blood, minus the stem cells, back to Rob.  They collect about a "half can of Coke" of the cells which is infused into me. The infusion takes about an hour.  We're not exactly sure when that will happen, if it does, but that day would be another birthday for me to celebrate.  I'm kind of hoping for the 26th because that's my dad's birthday, but any day would be welcome!

Rob and his wife, Judy, arrived on Wednesday.  They are also staying at the Lodge.  My sister, Betsy, and her husband, Pete, flew in from Arlington, VA, on Wednesday as well.  We all went to a Mediterranean restaurant that evening.  The next day we all met up with my brother, Tom, and my other brother, John, and his wife, Marilyn, as well as my son, Chris, my daughter, Rebekah and her family.  We had lunch at The Tea House, close to the Lodge.  It was great fun.  Of course, we missed other family members.  My sister, Ann, would have enjoyed the gathering immensely.  And my daughter, Megan, and her family would also have liked to be with us.  I hope to post some photos soon of others trying on my wig and a few of my big bro Tom, bald like me, looking very much like my twin.

Today, Bekah's going to pick me up for a photo shoot at the Walker.  I had told her I needed a decent one for the paper, if you get my drift.  I think she knows how to make it look like me, but better.  Like, maybe she can cut down on the neck size for crying out loud?

John D. went to Mankato to retrieve a few things and to check on the house.  He'll come back tomorrow.  Rob and Judy went to the Twins game with John R. and Marilyn.  I'm home alone!  Who wants to party?


I started a Caringbridge site, but won't do anything with it until we get the go-ahead.  I'll continue to use this blog for updates.


I love you.


Kathy
 

Sunday, April 8, 2012

The Stages of Being Kathy Dorn

The Seven Ages of Man
From As You Like It                                         A Few Stages of 
                                                                               Being Kathy Dorn
By William Shakespeare

Age 1
Third Grade
All the world's a stage,
And all the men and women merely players,
T
hey have their exits and entrances,
And one man in his time plays many parts,
His acts being seven ages. At first the infant,
Mewling and puking in the nurse's arms.
Then, the whining schoolboy with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress' eyebrow. Then a soldier,
Full of strange oaths, and bearded like the  pard,
Jealous in honour, sudden, and quick in quarrel,
Seeking the bubble reputation
Even in the cannon's mouth. And then the justice
In fair round belly, with good capon lin'd,
With eyes severe, and beard of formal cut,
Full of wise saws, and modern instances,                         
And so he plays his part. The sixth age shifts
Into the lean and slipper'd pantaloon,
With spectacles on nose, and pouch on side,
His youthful hose well sav'd, a world too wide,
For his shrunk shank, and his big manly voice,
Turning again towards childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.
Engagement Photo, 1965
Maryetta and Kathy, Junior High
Kathy Birk and Cora Birk, 2010
Mr. and Mrs. Dorn, 1966
I tried to put these photos in order, but it was taking too long and I need to finish packing for my extended vacation at the U.  I think you can get my drift.


John reminded me of this passage from Shakespeare's play, As You Like It.  I think it is apropos of the human condition., but of course the first lines are brilliant.  We are merely players.
So, might as well play well.

I will try to add to this blog this week, but if you don't hear from me or one of my surrogates, this act of this play is going well.

The Caringbridge site has not been established yet. When it is, we'll forward the information.


I love you, cherish you, and look forward to spending time with you during the next act.


The address of the place where we are staying:
Hope Lodge
2500 University Ave. SE
Minneapolis, MN 55414
612.379.6352
cancer.org/hopelodgeminneapolis

One note about the Hope Lodge: they will not accept floral or plant deliveries. Neither will the hospital. If you were thinking of sending some, don't bother. Save your money, or send some to yourself and enjoy them in my honor. 


50th Class Reunion, 2011
Happy to Be Me, 2008
Sans Hair, April 4, 2012
Maryetta and Kathy, April 4, 2012Showing Solidarity
Wigged Out, April 4, 2012

     Happy Easter!
'Twas Easter-Sunday. The full-blossomed trees
Filled all the air with fragrance and with joy.
                   ~Henry Wadsworth Longfellow

 

Monday, April 2, 2012

Aloha!

I love the Hawaiian greeting because it means both hello and good-bye.  The time is drawing near for me to close up shop here in the blogosphere.  By April 16, we should be pretty well set up on Caringbridge.  We'll keep you posted as  best we can.

This is the week for head shaving.  Last week I cut my hair (maybe chopped is a more precise verb) so my wig actually fits and feels better.  If I feel brave, I might even photograph myself sporting the Mr. Clean look.  It should be a real side-splitter.

My blood counts were low today, so tomorrow I will have a transfusion.  This should be my last one before we head to the U.  It will give me an opportunity to say good-bye to the wonderful nurses at Camp Dracula.  This morning I was able to say farewell to the caregivers (and a few patients who have become friends) in Chemo Bay.  Heartfelt hugs were handed out with little concern about white counts.  We promised to stay in touch.

I feel so fortunate that Spring came early this year and I was able to witness the rebirth of the natural world.  I'm going to take it as an omen.

Aloha until we meet again.

Love,
Kathy

Wednesday, March 28, 2012

Hair Today, Gone Tomorrow


I've always thought I was a little empty headed on occasion, but really, this is ridiculous!










Befor
I've had my wig for about a week now. It's not “Kathleen,” my catalogue pick, but rather a nameless creation in the Raquel Welch line. Somehow it doesn't look the same on me as it does on Raquel, but it'll do. I haven't shaved my head yet in anticipation of the transplant, but I think I should do it soon because I think the wig will fit a little better and I won't have to worry about stray strands of my own hair peeking out here and there.





After
My daughters came with me to the fitting. They promised they would tell me if the wig wasn't right for me and assured me they thought it looked “real.” While I was finishing up the transaction, the girls tried on wigs fast and furiously. Why is it that wigs and hats can turn a serious day into one of hilarity if you just let it. The giggles and guffaws emanating from the fitting room were priceless; the wig, not so much.





BIG NEWS
The transplant has been scheduled.

I have known for quite some time, but kept quiet about it while I made sure all my medical ducks were in a row. They are and so here's what the quacking's all about:

April 8            Check into the Hope Lodge Transplant House, Minneapolis
April 9-13       Complete physical work-up for me during the week
April 13          My brother Rob's work-up

April 16-20      Mega doses of chemo and radiation for me; growth factor injections for Rob

April 23          Not sure exactly when, but this is the week for the actual transplant. Basically, Rob will give his blood (as in a Red Cross donation) which will be spun to collect the stem cells. The stem cells will then be transfused into me. This process takes place over a two day period.

When the transplant is completed, I start a new life. That day is labeled Day Zero. The goal is to get to Day 100 with as few complications as possible.

I can't deny it – it's a scary proposition. I have read and heard about all of the possible scenarios, some worse than others, but I try to stay focused on being positive and looking for silver linings. I keep saying there's no reason why I can't be one of the lucky ones.

These last couple of weeks, I put myself in quarantine, not wanting to pick up an infection at this stage of the game. Of course, I've had to go out for medical appointments and have seen some adult members of my family plus a few friends. Sadly, no grandkids, though. I suppose one might call it self-deportation, to borrow a phrase from Governor Romney.

The next two weeks will be busy. John and I have lists of things to do before we pack our bags. For me, that includes buying new underwear. I am desperate for new underwear! For John, that includes everything else. He really does carry most of the weight around here. I've said it before – he's my rock (and roll).

I look forward to seeing my brother Rob. I am so grateful that he is my donor. We haven't spoken much on the telephone since this all transpired – John and Judy (Rob's wonderful wife) have done most of the communicating, so I imagine our face-to-face meeting will be quite emotional, at least for me.

I will try to write a few more times before April 16, but after the transplant we'll be switching to Caringbridge where John or my children will keep interested folks updated on my progress.

Bless you for keeping me in your thoughts and prayers.

Sunday, March 4, 2012

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.

Thursday, February 23, 2012

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.

Wednesday, February 22, 2012

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 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

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


Thursday, February 2, 2012

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.

Monday, January 30, 2012

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.

Thursday, January 26, 2012

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.

Tuesday, January 24, 2012

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.