Wednesday, November 26, 2014

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.


Anonymous said...

Deepest sympathies to you. Wishing you peace and hoping that your good memories sustain you through this time.

Anonymous said...

Echoing the above comment. Best wishes to you going forward.

Kristi said...

Chris, the thought of 8 years and not failing has been on my mind today. I came late to Ann's story (through Lisa' blog/twitter feed earlier this year) and read the blog from the beginning. This week, as you made the move to hospice, I went back and read a lot of it again, and I was struck by the number of months when there was no entry or only a single entry. During those many months, you and Ann were living your lives, albeit with her health challenges still there, but still living and having milestones. She got her degree and a job, you met her donor, and had many special times together. So, never a failure. Never long enough, but never a failure.

She was a beautiful woman, inside and out. You are in my thoughts.

Anonymous said...

Peace to you. Ann and you will continue to inspire all who encountered you, either in person or in cyberspace. I'm so very sorry for your loss.

Anonymous said...

I could not have asked for a better brother in law than you! You moved mountains and made those 8 years happen! Thank You

Anonymous said...


Anonymous said...

Sending all the sympathy possible. Thank you so much for sharing a story of true love and courage, but mostly love that will never end. May Ann rest in peace. May you find comfort some day, some way.

Anonymous said...

Your humanity, your kindness, shines through in every word. To be thinking of others and their needs while managing such a huge personal loss. I send you my deepest sympathies and thanks

Anonymous said...

Chris, you are amazing in your ability to think of others and their needs, even at such a heartbreaking time for you yourself. I have never met either of you, but have followed your blog from here in the UK and would just like to say that I think you're both awe-inspiringly amazing people. May peace be with you both. Much love, Sarah

Ronni Gordon said...

Ditto on how amazing it is for you to think of others' needs at this time. Sending my deepest sympathies.

Nancy said...

I've been at a complete loss of words. Chris you are amazing and your thoughtfulness for your readers is amazing. You beat the odds so many times and I am so proud of you both for your tenacity and going through so many struggles with such grace and dignity. May your beautiful wife rest now and may you seek comfort in knowing you absolutely gave her a beautiful life and helped her over come so much. She is not in pain any more and I hope that you can move forward as she would want you to do. Sending all my love and prayers. You are my heroes. Please keep in touch.
With love, Nancy

Anonymous said...

I don't know you but the love for your wife shines through here. I hope you found joy, love, and peace in her final days on earth.

Lisa said...

Sending hugs and strength from Maryland. And thanks. Many thanks.

susiegb said...

Chris, I followed this blog for quite a few years, via Ronnie Gorden's blog. You have both shown the amazing spirit that a human life can have, and as everyone has said, although it is never enough, you did indeed give yourselves another 8 years together and that is priceless. Sweet dreams for Ann, and I hope you will find an acceptance and renewal of the spirit as time passes ...

tessa martin said...

I didn't know Ann, I found her through Lisa's blog. Since then I have read this entire blog and agree the world is a much darker place without her.

April Erwin said...

Chris, thank you so much for sharing Ann with all of us. I last emailed her on 11/22. I'm not sure if she saw my email, but she was on my mind. I have been so encouraged in following you both on this journey, and I am so grateful for the opportunity to have known Ann. I hope you will add an entry to the blog every once in awhile and share a few more thoughts with us. -April Erwin

Marty Feigen said...

Chris,I'm sorry I haven't been able to be more in contact, but I also am just trying to get through each day without the other part of me here to share my life. 8 years seems to be some kind of special number. I also look at it that Patty and I got to share 8 incredible years. For those hypothetical patients looking for hope, you can definitely find it in both Ann's and Patricia's blogs, as well as so many others. When Patricia was diagnosed, we were told that without treatment, she would live about a month. We had over 96 months! Too short, but as you say about your time with Ann, I feel Patricia got to do some wonderful things. She got to attend the high school graduations of all 3 of her children, and then the college graduations as well. This was one of her dreams. But what I miss the most are the "boring" times we shared. Sitting with a glass of wine and talking about work, or what to make for dinner. Those are the wonderful moments that you share with loved ones, that are painful to lose. Stay well, my friend.

Suzy said...

Chris, I have been remiss in keeping up with Ann on Twitter and wondered what happened to her. I followed the blog link and here I am, saddened to hear of her passing. She was always so cheerful and upbeat on Twitter and brave. Always brave. I'm truly sorry for your loss.

Paula said...

You and Ann have been a part of my life since fall of 2007 when my niece's husband was diagnosed with AML. He died in December of 2009 at the age of 30. You were such an inspiration and support to me.
Thank you for your help. Continue to heal from this monumental loss of such a tenacious, beautiful person.

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