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.


34 comments:

Kurt said...

Bless you both. We love you.

Kay said...

Love from a stranger.

Kristi said...

So sorry, Chris.

Nicole Calisi said...

Love and light to you both

Donna said...

Love and light from another stranger. I'm so sorry.

Anonymous said...

Peace to you both

Anonymous said...

May those shores you find yourselves on treat you gently and allow you to find peace.

Caroline said...

I am so sad to read this. I've known Ann online for a few years and we have shared laughs, sad news and general online things including Asian kawaii (I'm also 1/2 asian). I love her smile and kind words or a quick "like" when I think nobody is listening. My heart breaks and like hundreds of us who have only known Ann online, I know we are on the brink of a very sad time and yet our loss will be only a fraction of what will be felt by those who know you two in person, who know the day to day Ann and Chris. And all this is minuscule compared to what you are facing, will face. I hope you and your friends also have a plan for you. Sending all the love and hugs and earnest wishes for some miracles. Kiss that lovely lady for all of us who wish we knew her in person. xox

Anonymous said...

Deepest respect and warmest of thoughts from a stranger. Your strength and love for each other is a beautiful and mighty thing.

Lisa said...

Hugs from Maryland.

Anonymous said...

Love to you and Ann

Anonymous said...

All my love to you both.

Anonymous said...

Chris, I feel so deeply for you and Ann....I have been following her tweets for a couple years , found the connection via Lisa Adams.....who loves and honors Ann mightily....I tried last evening to respond to your tweet that you feel like you had failed, but due to my dinosaur abilities, could not. Please understand my dearest child that you have no control over what happens to someone you love.....we cannot save those we love from the things that happen and it is not our fault. You are living and creating the best environment possible for your beloved....there is nothing more you can do and please never feel a failure.....Ann knows how much you love her...this is all that is important and all there is. She will transition and you will be here to carry on and you will do so in a positive way. Your love for one another is eternal with no boundaries....you will always have that to comfort you and Ann would assure you of the same. Peace and love from a stranger to you both.

Anonymous said...

Dear Chris,

Your love for Ann shines immensely. Love to you both.

Anonymous said...

Your true love and care for your wife shines out across the internet, what an amazing lady and what an awful time her body has given her. I hope you find peace in your remaining time together and don't forget to take care of yourself.

Thandi said...

Watching two loved ones deal with cancer here in South Africa. This is a disease that is guaranteed to break the heart-be it via the horrific side effects of treatment for many, or death. And so, our hearts break as we read that you need to prepare for death. No words...

sabraheart said...

Sending you and everyone who loves Ann an unlimited supply of kisses and hugs

Anonymous said...

Hope that Ann can leave the hospital and that you find some peace together in whatever time she may live. You have both inspired me during my husband's long cancer journey and you continue to do so.

Anonymous said...

I, too, have followed Ann and your story online. Bless you both.

Anonymous said...

Love and admiration to you both.

Mara said...

Ann, no matter what happens, you beat a near-fatal diagnosis of A.L.L. TWICE. No one and nothing can take that from you.

amy Hilkirk said...

Chris, as a very old friend if Ann I want to tell you how heartbroken I am that such a sweet, wonderful woman as your wife has to go through this. You are a strong man and she is blessed beyond words to have you with her through this. I read your words and my heart aches for you both since obviously you were both put here for eachother. Both of you keep strong and know there are people out here who love, respect and admire you both very much

Anonymous said...

Your strength and love for each other is amazing. May you find peace in the days ahead. Sending lots of positive vibes in your direction.

Nyckelpigan said...

After going through a bone marrow transplant here in Sweden in 2013, I found your blog and have read it all from the start. It has been very inspiring and informative, and it feels like I know you two wonderful people. It breaks my heart to hear the bad news, but I am very thankful that you take the time and energy to let us know what is happening. I hope Ann will recover somewhat and that you will have some great moments together still.
Love from Anna-Karin in Sweden

Jeannette said...

Sending our love to you all. -Jeannette Hill

LPC said...

Ann has been nothing but a joy where I know her, on Twitter. Not just the regular pleasant company, but someone truly joy-creating. Please let her know she has brought something to others' lives - I don't ask you to say anything specific about me, you have too much to cope with now, but just over-arching - and let her know so many are there with her in spirit, saddened, but made glad by who she has been and will always be. I hope you all get some good times in hospice.

Anonymous said...

I have been following Ann for years now and though I don't know her, it breaks my heart to hear this. You will both be in my thoughts--literally. Peace and love to both of you.

Anonymous said...

Another stranger who has been following your story since 2007 (through Joe and Karen's blog.) No words but just lots of love and gratitude for sharing this part of your lives and your story. You are both in our thoughts.

Kacie said...

I can't bear the thought of this, Ann. You've been my "virtual" friend, always a source of love and optimism for so long. You sent me support during some of my darkest moments, which were so trivial in comparison. I'm so angry that after coming so far, you're in so much pain. I'm thinking of you and Chris every day. Whatever happens, may you both have peace somehow. Keeping you at the top of my prayer list, sweet friend.

Jim said...

Prayers for you both, during these last days together. Prayers for comfort and love on this earth, and prayers for peace, hope and brilliant joy in the life ahead.

Anonymous said...

Does Ann have an Amazon wishlist or something similar? I've been reading this blog for a few years now and have found it inspiring. I am sad to hear about the most recent turn of events and I'd like to get her something that would make her smile. If she has a wishlist, could you please share it?

Anonymous said...

I wish comfort to you both.

Anonymous said...
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LacubriousOne said...

Been following the blog since initial diagnosis...thanks to you and Ann for sharing the journey. There are really no words I can offer that would be sufficient...so I will just say prayers for you both.