Friday 9/30

Just a quick update.  In the quest to identify the source(s) of Kathy's infection,

the hospital doctor wanted to rule out TB (which evidently can show up with MDS).

 

So, yesterday she was given the Mantoux (sp?) shot and put into an isolation room.

We should get the results by Sunday morning.  Her temp has been normal since Wednesday

morning and other vital signs are ok.  No nausea or chills, but the night sweats still show up.

They may be caused by her cancer.

 

I can visit her, but I am supposed to wear a mask.

 

Seize this day.  JD

A Teeny-Tiny Bump in the Road

Hello. Megan here again.

After I talked to Mom last night, she got another fever. But the good news is that the doctors had it under control by 9:00, and she has been fever-free so far today. Still, the fever threw a wrench in her plans to possibly go home today. Keep your fingers crossed for tomorrow.

We'll keep you updated as best we can.

Love,

Megan

Pneumonia

Hi, everyone. Megan here. Dad asked if I could just go ahead and post an update tonight. So here it is.

I talked to Mom on the phone for a little while tonight. She said she was feeling much better. The blood bags were hooked up and she was getting yet another transfusion, but her fever has been gone since yesterday. The doctors have confirmed that she has pneumonia. She probably has been fighting it for quite some time. She had a bad cold about a month ago, and the pneumonia most likely stems from that cold. Whether or not that's the only infection wreaking havoc right now, the doctors aren't sure. She's on an all-purpose antibiotic that should knock everything out. She needs to get rid of the infection(s) completely before she can start the drug therapy. She thinks she might be able to go home tomorrow or Thursday.

Thanks everyone for all your support. It means a lot to all of us.

Love,

Megan

Another Update

Hello Again.

 

Just a quick update on a busy five days.

 

Thursday--We spent the whole day at Andreas Cancer Center.  The transfusion took longer than expected because of an antibody/antigen issue.

 

Friday--Same Day Surgery.  The port is in (hooray).  Friday evening, Kathy felt especially good.  We hoped to visit her Quilt Club's retreat in Sleepy Eye on Saturday.

 

Saturday--Gradually less energy through the day.  Sick in the night, sicker Sunday morning.  Fever and upset stomach and chills and nausea and general unsteadiness took turns or partnered to prevent us from doing anything.

 

Sunday Afternoon--Off to the ER (almost needed an ambulance to get her there)  The ER Doctor thought she needed to be in the hospital to stabilize her condition.  We agreed.  Too much doctoring for my skill level plus the possibility that pneumonia was the mayhem behind the scenes.

 

Sunday night--Kathy was feeling better.  The blood bags were being attached around 9:30 and she was in a dozing mood, so I headed for home (only 2 blocks away, fortunately).

 

Needless to say (but I made a living saying the needless, so I can't stop myself) the frequent transfusions require the words that my Irish wife said would only appear occasionally in her blog. (Kathy taught me those words and conducted review lessons whenever necessary. I have learned them very well, but won't use them in this venue until she says I can.) 

 

Thanks,

John

An Update from John

This is Kathy’s blog, but she asked me to fill in for the last few days.

I can’t match her style so I won’t try.

And I’ll start with a disclaimer.  If the following is confusing, it is because it is confusing.

Kathy was scheduled to get a port on Friday the 16^th and start chemo on Monday the 19^th.

But on Wednesday the 14^th Kathy identified the symptoms for a bladder infection and we went to Urgent Care and things took a while and by the end of the day the analysis did not confirm a bladder infection.

We went in early on Thursday the 15^th for the bloodwork (CBC—Complete Blood Count) because we were sure she would need a transfusion on that day before she could have the surgery.  

But the results were slower getting to us because usually the bloodwork was ordered by her oncologist but this time the surgeon was the primary Dr. and he was naturally checking her platelets (which were low) and…anyway, the transfusion was pushed to Friday the 16^th and the surgery moved to Monday the 19^th.

So on Friday we went to Andreas Cancer Center at 11:00 for blood and maybe platelets (it’s a bit of a blur) and finished up around 4ish.

But by Monday the 19^th Kathy knew the urine analysis would reveal that she did have a bladder infection.  It did.

She was given antibiotics and the surgery was moved to Friday the 23^rd.

But today (Tuesday the 20^th) she felt especially weak and unsteady and stayed on the couch most of the day.  Her temp got up to 102.6 and after talking to an oncologist nurse and an urgent care nurse who talked to the Dr. who treated her bladder infection the day before we headed to the ER around 4:30.  Four hours later, with a much emptier stomach but a broken fever (hooray), a few x-rays (no pneumonia—hooray) and another CBC (bloodwork—low hemoglobin—6.6—not good at all) we came home.

It is almost midnight.

I’ve been summoned to get some sleep.

To be continued.

Wednesday a.m.

Not much to add.  It may be a transfusion day.  If normal hemoglobin level is 12-14, 6.6 is below any acceptable level. 

John

PS  Throughout all these days, the people at the Mankato Clinic and the Mayo Clinic/Hospital have been working cheerfully and tirelessly to make the best of a bad situation.  The ripple effects of bad blood are rather daunting.  When the doors are off their hinges and the windows are broken and holes in the roof are widening it’s a challenge to deal with changes in the weather.  The staff is helped, of course, by Kathy.  The number of  times she says “Thank You” in one day is uncountable.  But she has never been one to take daily acts and expressions of kindness for granted.  I am trying to follow her example. 

Thank you for listening.

About Final Journeys or We're All in the Same Boat

I've been mulling over what I chose for the subject line when I extended an invitation to you to participate in my blog.  I used, "a bump in the road--an invitation to follow my final journey".  Now, I'm pretty sure you haven't gotten stuck on that little turn of phrase, maybe you didn't even read it, and if you did, you aren't losing any sleep over it.  It's just a subject line, for goodness sake!

OK, but I taught writing for a while and could possibly have attended one too many writers' workshops where the Famous Author at the podium answered the usual question, "To what do you attribute your success?" with the usual answer, "Rewrite, rewrite, rewrite!"  I took the advice way to heart and I find myself thinking about my writing in a very "Brokeback Mountain" way.  Think: "Word (sentence, phrase, paragraph, whatever), I can't quit you!"

So there I was, looking at the subject line, thinking, "That's not quite what I meant."  Because, I realized, we are all on a final journey.  All of us.  Every single one of us.  That's what life is: a final journey, unless you plan to freeze your head a la Ted Williams in an attempt at immortality.

There may be other interpretations.  If you are a faith-based individual, of whatever denomination, you might argue that there is everlasting life after death.  But, another spiritually-minded person might counter with the notion that even everlastingness has a finite feel to it.  A paradox?

Never mind, I'm going with the idea that birth is the beginning of the journey and that life (and death) is the final journey.  Could be wrong.  Maybe next month I'll have another idea.  

Years ago, someone once asked me what my philosophy of life was.  I said it was trying to figure out what my philosophy of life was.  Yegads, how convoluted can a person be?

So, there I was doing my mulling when an image flashed in my head.  Backstory...My beloved daughters, Rebekah and Megan (and their husbands, Paul and Troy, respectively) granted me and John the privilege of attending to the births of each grandchild.  First Kyle (2004), then Cora (2007), followed by Ruby (2008) and anchored by Eliza (2009).  I couldn't have been given a better gift in my whole lifetime than to see those precious babes come into the world.  I could have done without all the icky blood and placenta, but I digress.

My imagined scenario went like this:  As each baby slid through what I'll call the tube (I taught seventh grade Health so I know the correct terminology) and after everyone screamed,  "It's a boy!" or more often, "It's a girl!" we noticed a tag tied to the little piggy that goes wee-wee-wee  all the way home that read, You are invited to accompany me on my final journey.  In my mind's eye, we didn't turn the tag over, but maybe the flip side said, I made it this far; are you with me?

And then I replied, in my mind's eye (whatever the heck a mind's eye is), Yes, I'm with you, but please don't poop on me.

So, I guess what I'm trying to convey is that we truly are journeying together.  And it started whenever it was that we let each other into our lives, for which I am grateful beyond words.  Thank you.

But, since those little grandchildren aren't here messing with my head right now, I'll just come out and say it, Let's promise not to shit on each other ever again.  I'm with you, dude or dudette.

Kyle

Cora

Ruby

Eliza

Today was a good day--I even got some sewing done!  

Next entry will be about a remarkable young woman who shared a little of her life with me and, in particular, about the time she showed me what she had been doing all morning in a summer school class.  I wish I had photographed it!

The Original "Kat" in the Hat

I've been waiting a long time to use this photograph of me with my grandmother, aunt, and third cousin, from right to left, respectively.  I think now is perfect.  You may chuckle over the old folks, but look again.  What in hell possessed me to buy that outrageous hat!  Do you think I was trying to out-old my relatives?  Was I hiding a pitcher of martinis and a jar of olives in it?  Was the Bishop coming and I wanted to have a better hat than he?  I cannot fathom any good reason to have plunked down good money for that monstrosity.

However, now I wonder if it might make a good chemo cover should my hair fall out.  I could pull it down over my missing eyebrows, if necessary.  Hat, I mourn the loss of ye.

Change of Plans

Ha!  Every day there's a change of plans, sometimes major, but mostly minor.  I believe that to be a universal truth.  Mostly, we are taught at a young age to just roll with it, which I think is a good approach.  That same message is found in the Serenity Prayer to which many people grab hold as their special Guiding Light, even those not particularly religious. Have the serenity to accept those things we cannot change--just roll with it.

The minor change we're dealing with today is that my implant surgery has been pushed to Monday, Sept. 19.  My hemoglobin count is so low  that I need to spend most of tomorrow afternoon, the day originally set for the surgery, at Camp Dracula.

I make fun of the Andreas Cancer Center, calling it Camp Dracula, but let me tell you what it's really like.  One of the first things I notice when I enter the space is how quiet it is.  The next is how bright it is.  Sunlight floods the area on good weather days, but even on dreary days, there is still wonderful artificial lighting that doesn't allow the darkness in.  The center is relatively new and they must have gotten some input from cancer patients on how to make a potentially terrible place seem like a haven. 

When it's my turn, I am taken by a nurse to a station (which sometimes I get to choose--once I chose one where I could look out at a small courtyard area that was adorned with beautiful hanging and potted plants--it was glorious).  Once situated in my comfy recliner, I almost think I'm having a mahvelous day at the spa, except for the bag of blood to which I am attached.  The nurses are like busy bees, buzzing about, making sure I am as comfortable as possible.  Because they all work together, the vibe is one of positive energy. 

Most of the transfusions have been on Fridays, so my usual noon meal is grilled cheese on wheat with soup or salad and a dessert.  That's a Friday comfort food for a girl raised Catholic if ever there was one!  Pass the ketchup, please.

Each station is equipped with its own TV, so if I want to, I can watch "House" marathons.  I'm sure the irony isn't lost on you!  Nobody is ever disturbed by TV watchers because the audio comes through the remote, which people just place on their chests.

But, nothing is as remarkable as the patients. What I have observed could probably be characterized as a spiritual experience.  The place is filled with people who are "rolling with it," some reading, some dozing, a few with friends or family whom they have allowed into their little private place of pain.  I hear many thank yous for the care they are being given, and so far have not heard a cross word spoken.  Well, maybe I did once or twice to John--old habits die hard.  Some of the people I know, but most are strangers, even though their kind smiles belie that fact.

I told John last week that I almost look forward to going to Camp Dracula just to get a dose of what's right with humanity.  He agreed.

So tomorrow I'll order my cheese sandwich.  Life is good.

With Apologies to John Malkovich and Carly Simon

If you have never seen Being John Malkovich, the joke in this blog's title will elude you, but don't worry because it's a stupid joke that maybe only I think is funny anyway.  I'm a little weird; if you know me, you know it's true.  I'll get to the joke in a minute.

Parodying Carly Simon's lyrics is a bit more understandable.  I mean, if you have a blog, and that blog is about you, what else can one say?

So why start a blog?  Well, I thought it seemed better than Caringbridge (a wonderful site, by the way) at this moment in time.  I like to write and I thought  this might be the best way (and more fun) to keep my friends and family updated on how I'm managing the disease with which I was diagnosed in August: Atypical Myelodysplastic Syndrome (MDS), a cancer of the blood.  Atypical?  YEAH!  Now I can be distinguished from those poor Typical blokes.  Sorry!  Seeing a silver lining where there isn't one is sometimes just that exciting.  We should all manufacture silver linings now and then.

Seriously, it's not something I wanted to deal with, but it is what it is.  I know quite a bit about the disease now, but my main game is low white cell counts, low red blood cell counts, low hemoglobin, and low and immature platelets with physical manifestations that include extreme fatigue, shortness of breath, nausea and being light-headed.  I've been visiting Camp Dracula (Andreas Cancer Center at the hospital) for weekly transfusions since August.  I start Vidaza, one of three FDA approved drugs, on September 19.  I'll have at least 4 courses of this drug therapy, 7 days once a month for 4 months, after which time I'll have another bone marrow biopsy to see if the treatment is working.  If it is, Whoo-hoo!  If not, we can consider another treatment.

So, now about that little joke...On September 16 (2 days from now) I will have a port/catheter implanted surgically into my chest so all transfusions, chemo, blood draws can be done through the port, sparing my poor veins from yet another needle stick.  Still don't see the humor?  Well, in the movie, Being John Malkovich, there is a portal through which the characters must travel in order to get into the head of John Malkovich.  I know!  Who would want to?  But, I confess, the movie's so quirky that I smile when I think of it.  So when I heard about the port in my chest, I thought, "Wow!  A portal into the mind, heart and soul of ME!"  Now do you see why I'm so vain?  Then I realized it's a perfect metaphor for trying to make some sense of life and death.

So, if you are so inclined, please stop by once in a while to see how my journey's coming along.  My intentions for this blog are not only to document successes and setbacks, but also to try my hand at some reflective wisdom with a little humor thrown in for the hell of it.