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 

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!

  

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.

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

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 supper.  A 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
 

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,
They 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, 2012

Showing 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

 

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