Sunday, October 12, 2014

End Game

Chris here:

It has been a busy week and lots has happened much of it unexpected. 

It started Sunday morning when Ann told me the bottoms of her feet had gone numb.  A few hours later the numbness had crawled up her legs.  A few more and it was at her hips.   Next she had trouble standing and walking.  

With the help of a neighbor I got Ann loaded into the car and we set of to the local ER.  After a long wait she had a CT followed by an MRI.  The result was that her T4 vertebrae had collapsed and ejected a large bone fragment into her spinal cord. By this time she was paralyzed from the waste down and headed into the OR for a spinal  decompression.  

Surgery went well but there was a worrying mass of inflammatory tissue surrounding what used to be the vertebra. Initially pathology in the OR identified it as "spindle cells" and me and her co-workers breathed a sigh of relief that this tissue wasn't cancer.  

The next day in the hospital was different.  Relief turned to panic as a second pathology read reported squamous cell carcinoma.  I wouldn't believe it so I collected Ann's scans and tissue samples and drove them four hours to MD Anderson in Houston to personally place it in the hands of the Radiation Oncologist who treated her 8 weeks ago. 

We all thought too many parts of the picture didn't make sense. No hypercalcimia, a previous history of osteopinea, a painful back muscle s couple of weeks ago while lifting something heavy and a lack of cancer in the originally treated area all seemed to point to a osteopenic back fracture brought on by prolonged exposure to chemotherapy.  MDA seemed to agree and pointed out that it would takes big shift for Ann's original cancer to begin to metabolize fast enough to destroy bone, besides squamous cell was not known for metastases to bone.  I left MDA that day with a promise from Ann's docs to find out what was going on  

Unfortunately the next day we had our answer. It was cancer - same markers as the small tumor on her tongue, same as the tumors in her neck. 

This is as bad as things get.  So while Ann has regained some control over her legs now that the broken bone has been removed, as far as cancer goes there are no more silver bullets in the gun, no more space left on the margin. MDA says that this is treatable but not cure able. 

In other words Ann is terminal.  

Life expectancy is somewhere between 12 weeks and 18 months.  

As you would expect this is incredibly hard.  Both of us have been suffering anger, grief, sadness and fear for the future over the last couple of days.  

Today we made something of a breakthrough in how we are going to deal with it.  What we have come up with is a three part plan: 

1- we will go back to MDA for about 10 days of targeted radiation and chemotherapy to try to kick the cancer back as far as we can. 

2- we will then return home and I will get home health in to help Ann around the house with stuff she has trouble with and physically therapy to help her keep exercising her legs.  We will spend all ther rest of our time screening movies, having dinners and fun with friends, family and neighbors.  Most importantly we will have lots of love from our Kitties who are the light of Ann's life. 

3- when Ann is ready we will find a hospice that will treat her with all the respect, kindness, dignity and gentleness she deserves.  

Long time readers of the blog will be disappointed that we don't have a happier end to share.  But this isn't a time for tears, or bitterness for what might have been.  It's a time for savoring what we have together and how much we love each other and always will. 

Everyone has to do this once and I am determined that I am going to make this the best it can possibly be for my Best Friend, Lover, Wife and above all Soul Mate.  She will eternally be that beautiful woman I married on a hot June day on Bloody Bay.  

 

  

17 comments:

Thandi said...

Love and respect..and pain. Pointless even letting out the emotions that I feel about this... From me, in a small town in South Africa.

LPC said...

I am so sorry. Ann has been a light, even over the Internet, a gracious, hope-for-humanity-giving light. Please send her my distant love, and let her know how much she gave in our little interactions.

I know that you will both make your way through this upcoming time as beautifully as you have all the events leading up to this. You don't owe us a happy ending in any way. We owe you a debt of gratitude for the grace and kindness you have both exemplified here.

Much love, again, although distant, I think it's real.

LacubriousOne said...

Well..."that sucks" seems like the biggest understatement for this news. I've been following your blog for years, and learned much while reading about the trials and tribulations that you and Chris have endured. I don't even know what to say. I hope you know that your words and experiences have touched many, many people, including me. Thank you so much for sharing your journey with us.

Anonymous said...

You two are amazing...... I'm so glad you got to
A place where you are determined to enjoy life
Fully together. God Bless you both

ginger m said...

You know you never really know what to say at these moments, so I just go for what I feel. I can't imagine how incredibly difficult this must be for the two of you. To Ann I would say that I've never known of anybody, anybody who has such a truly great attitude through the most difficult of times. To Chris, I am envious of your wife that she has such an utterly devoted husband. I know my husband loves me, but not like this. You two are so fortunate. A funny thing to say I realize. But I also know that you realize it too. Now Chris, I don't know you but your twitters and blogposts make me feel like I do so I'm going to say that you need to take extra care of yourself right now too. The stress can take a physical toll, I know, I'm going through it right now with my mother, not nearly as severe, but enough to disrupt my health. So take good care, lean on friends, family, co-workers. They want to help, they NEED to DO something. Let them. I wish you both the best there is at this time. Enjoy those kitties, I have two. Stella who is 17 pounds of black muscle and Mouse who is as she is named, a small gray cat with a heart as huge as the sofa she dominates. Best to you both.

Kacie said...

My heart breaks for you both. I feel like I know Ann after all these years of following her story and sharing bits of our lives on social media. Your courage is incredible, and I think it's so beautiful to choose to spend as much time enjoying life as you can and enjoying each other. Ann has always shown such grace and perseverance with every single setback; she inspires me always. I feel helpless and I wish I could help in some way. Chris, your dedication is the epitome of the vow of 'in sickness and in health.' My prayers for you both on this leg of the journey. You are both precious and loved.

Nancy said...

You have touched so many lives in so many ways. I can't even imagine how many people you've impacted. From Day 1, you have continually educated and inspired us all. I'm proud of both of you for all you've endured and for coming to this stage with such grace and dignity. True to form, you are continuing to show us how to live out our lives. Words cannot express how sorry I am. I just want you to know you've been such a an incredible force in my life. I thank you for sharing your life with me. My prayers are with you both. Let me know if I can do anything and when I can fly over. I love you both so much.

Kate said...

Thank you so very much for sharing your story. Please know it brings inspiration as strength to many. Our prayers are with you both and our heart broke for you reading this latest entry. Love from southern Florida.

Ronni Gordon said...

Please send Ann my love. I saw this coming from her Facebook post yet still it is so hard to hear. You are both so very brave. A nurse gave me a button that I still have that reads CANCER SUCKS and it surely does but it has nothing on the love that you have for each other.

Mara said...

There are just. It words to express my sorrow. R and I will be there for the both of you, no matter where the road leads.

Sue Maden said...

I only know Ann through our connections on social media. But I'm oh so thankful for that. I appreciate you writing the blog and I am thinking of both of you. I especially love that you said, "It's a time for savoring what we have together and how much we love each other and always will." I'm going to savor along with you and be thankful for both of you.

Yo! Adrian said...

Hello Chris & Ann,

I'm very saddened by this news. I'd like to also thank you for sharing your story. You two are an awesome power couple, an inspiration to us all.
Kindly let me know if I can help in any way.
Sending prayers and long distance hugs!

Anonymous said...

I started following Ann's story back when my friend, Erica Murray, was post-transplant. She died in 2008, and I followed Ann's story for a while and lost track of you guys after the tongue thing seemed to be resolved.

You popped back into my heart tonight, so I checked up. I am so sorry to read this. So terribly sorry. You have both always been so graceful and so willing to educate. I wish you a beautiful closing chapter together.

With admiration,
Abby

Cathy said...

I'm so sorry to hear the news. I've been rereading the blog and I'm struck again by both of your resilience, grace and humor. It's not the ending hoped for but the narrative is the same - a love story. And it's not over until it's over.

Anonymous said...

Deeply praying for the both of you. The fight is about the battle but the love is about the victory.
Aimee P.

Marty Feigen said...

I had thought I had finished crying for a while, but it seems there is always more heart that can break. I am so sorry; I will try to call next weekend when I can be alone to speak with you both. If I can give you more love and strength, it's yours.

Marty

Anonymous said...

Dear Chris - I stumbled upon this blog through Lisa Adams - and just wanted to send some internet love and hugs. It must be incredibly hard and painful, but I hope you know you are not alone. Thank you for sharing your stories in such elegant, gentle, and loving ways.

Yours, Jacelyn