Wednesday, November 26, 2014

Final Arrangements

If you are in the Baton Rouge area and would like to pay your respects Ann's funeral will be at the Rabenhorst Funeral Home on Florida Blvd on Saturday the 29th.

The link below will take you to a google maps link for directions


Visitation will take place from 9-11am

The service will take place at 11am

In lieu of flowers please make a donation to the M D Anderson Cancer Center


Gentle Closing

I think this will be the last entry into the blog.  And I realized that I need to be gentle in its closing.

Not everyone who read this was interested in just me and Ann as people.  Some have come to this blog just like we did to others.  In a search to find someone who beat the odds.  Fought the cancer and won.  Someone who walked between the all the rain drops.

They like Ann and I (we are still a team) maybe facing a bone marrow transplant to try and cure a blood cancer and are looking now at these last posts with a mixture of despair and horror.  Please realize that your experience doesn't have to mirror ours, in the sense that despite our best efforts we stepped on almost every landmine that Ann's biology could think of.

ALL t(4;11) - one of the worst varieties of acute leukemia.  Got it check.

Post transplant Lymphopliferative  Disease (PTLD) - A rare complication.  Got it Check.

Late GvHD of the lungs - Another rare late term complication.  Got that one too...Check.

Squamous Cell Carcinoma of the Tongue - Another complication.  Check.

Squamous metastasis going undetected because of fluid retention from steroids - Check.

Squamous metastasis to the spine - very rare.  Accounted for.

So as I am now speaking to the hypothetical transplant patient, You, odds are you will not have all of these complications.  You might have some, or a few, but in the struggle Ann and I fought through we found the deck stacked against us time and again.  Chances are if there was a 'poor' patient population to fall into we were either in it or on the boarder of it.

What I am trying to say to you Mr. or Ms. hypothetical transplant patient is that, Ann and I had very few breaks, but we obeyed protocols, said infection free, and educated ourselves about medicine, oncology, hematology, transplants, and the human body.  Enough so that we could take a proactive stance in our care, not just accept things on face value.  We empowered ourselves.

And like so many people are telling me today, we didn't fail, we brought 8 precious years worth of friends, pets, lazy Sundays, late night movies, grocery trips, birthdays, gardening, reading, snarky jokes, love making, studying, learning, listening to music,making friends, special dinners, meeting her donor and so many other things, but most of all dreaming.  in short it brought us 8 years of joy.

When Ann was diagnosed all those many years ago at 32, she would say to me, "I just want to live to my 40th birthday".  Well, we did and could we have done anything better?  Sure.  But we didn't live life like it was going to end on a schedule.  We lived it like everyone else does - one day at a time focused on what you need to to stay 'normal' when you have been touched by cancer.

My message is simple Mr. or Ms. hypothetical transplant patient.  Don't give up on yourself because Ann has died.  Go back and look at all the things she accomplished because she never quit even when the odds ran against her.  She made the most of her life despite the obstacles biology placed in her path.

Never give up and yourself and don't give into despair.  Ann never did and always tried to make her life one worth living.

Try - you might do better than her.

I did say this will be the last entry into the blog, but there may be one more.  We will have to depends on how much strength I can muster.

Beyond the infinite

 At 9:30AM this morning my best friend, wife, lover and radiant bride took her last breath.  The light is gone from the world.

Sunday, November 23, 2014

Don Quixote

"Sancho my armor!  My sword!"

 I know how Senior Quixote felt now.  To be galvanized to heroic action, by a great up swelling of determination and virtue from the core of your being only to find it is fundamentally in vain.

Now I am not going as far as to say I look the fool like the old Spanish nobleman, but I am certainly humbled.  Let me explain...

As set forth in the pervious update, Ann and I had formulated a 3 phase plan to cope with what is happening, scratch that word 'happening', too vague and polite.  What I mean is her death  There - I said it.

Unfortunately we are stuck in Phase 1.  When Ann got back from MD Anderson she had a fall and hit her head while using the toilet.  That lead to EMS showing up at the house and them discovering her blood pressure had dropped quite low.  This brings us to the Emergency room and from there back into the local hospital.  Time elapsed from discharge at MDA to readmission into hospital, a scant 16 hours.

So now once again residents of our local hospital we tried to make the most of it.  Ann got moved into rehab and spent a good bit of time trying to get her stubborn legs to function correctly again - with some good and bad results.  Steroid induced myopathy is stubborn and needs a long term approach to treatment for good results.  But she pushed on and kept trying.

This is of course past tense.  On Thursday of last week she started having difficulty with tasks that just the day before she could do.  Also in the span of a couple of hours her O2 saturation began to drop from 99 to 86.  Then a chronic cough, and difficulty breathing.  Suspected diagnosis is of course pneumonia.  So rehab comes to and end and she is moved to acute care.

IV antibiotics and antifungals are started.  Cultures are taken of blood and sputum.  Blood counts are checked and it is noted how low Whites, Reds and Platelets are, so transfusions are started.  A couple of days later those numbers aren't getting better despite the infusions.  So there is now serious concern that the infection in her lungs may have gotten a foot hold in her bones and be suppressing or ablating her marrow.  Net result is that Ann is having trouble breathing without oxygen running - which right now is at 1.5 liters, but has been as high as 4 liters.

This all sounds bad and is.  But the really worrying part occurred this morning when Ann coughed up some phlegm and blood.  This is an ominous sign and points to a barely controlled systemic infection, of which they still do not have a cultured organism for.  With out which there is no targeted method for fighting it.

But Ann, maybe out of a wisdom greater than my own, spoke the truth to me last night.   Through labored breathing and with a long pause she said "Chris, I know I'm dying."

Those five words laid bear the truth to me. Like the old myopic knight I have been looking at the plan we made, urgently focusing on how to get to phase 2 (aka. the fun part -parties etc).   Celebrating every step or achievement she made in rehab, just hoping that she would make enough progress so that we could resume some sort fiction of a 'normal' life until recurrent scans said we couldn't afford it anymore.   I never seriously considered that Ann might experience too many complications to make it to that far.

It seems that these are the shores of the land we find ourselves unexpectedly upon. So we are revising our plans now before we lose the chance to do so forever.  Tomorrow, I have an appointment at a well regarded inpatient hospice.  If it is acceptable then we will be moving Ann's treatment there.

I am too tired and emotionally drained to proof read this.