Dr. Bobs Adventure

We've created this blog for several reasons. First is to keep family and friends(including Bobs' pts.)informed of Bobs' condition while he undergoes treatment for Acute Myelogenous Leukemia(AML) at HUP. You may also write to Bob by posting a comment, which I'll print for him to read. Please feel free to pass this blog site on to anyone you think may want to join us.Instructions to blog are listed under day 12, and bobs' address etc are under day 14. Click on April Archives to find both.

Monday, February 11, 2013

"Winding Down"

Dearest friends and family,

The title quote is something that Bob said to his sister Santa when she was here with him Thursday. He also used a car metaphor, talking carburetors and engines, but being dumb girls we couldn't figure that one out. The heart-breaking truth is that Bob is declining rapidly. He went on hospice on Thursday, after having a bad day Wednesday( trouble breathing) and making the decision that he does not want to go to the hospital anymore. The plan was that we continue all meds and try to stay the course, but he's just too tired to carry on. It's taken me until today to completely acknowledge the fact that Bobs' time here is, as he says, "winding down". He's received liquid morphine a few times for his breathing, and of course it makes him comfortable, but sleepy. He's wearing his oxygen continuously now and a hospital bed is being set up as I write this. He's still eating...beef stew last night, courtesy of my cousins John and Connie...and his perennial oatmeal this am...well more like lunchtime, actually. And eating wore him out and now he's sleeping again. We will transfer him to the hospital bed soon and then he'll be more comfortable and I won't have to worry about him falling 3 1/2 ft. to the floor. The hospice staff has been wonderful.

I find it hard to believe that I'm writing this, but when I think back to Bob's first hospital stay, when he failed the induction chemo and the repeat high-dose chemo and he was told to "get his affairs in order", well, how blessed we both were to be given this gift of the past 7 years. It was 2003 that he banged his shin, got a whopper of an infection that never healed, which lead to sepsis, which finally lead to the diagnosis of myelodyplastic syndrome. Then 2 years of more infections, bleeding problems, daily nupogen and epogen injections, thrice weekly platelet and RBC transfusions, before it changed to leukemia. A clinical trial of revlimid, after the failed chemo, lead to a year in and out of remission. Then finally in 2006 Dr. Luger said his marrow was good enough to go for the transplant and the search was on for a donor. He had several very good matches, but of course the single perfect match was found in his donor Mikhail, from Germany and on May 25th, 2007 Bob received the stem cell transplant, very anti-climactically as I recall. It was like getting a blood transfusion and he did beautifully. But the point was, ( I guess I just had a little cathartic moment there), that life is a gift, no matter how much time we're given. And Bob is and always will be the greatest gift I will ever receive.

Please continue to remember us and pray for peace and comfort for Bob and strength for me. I'm not sure how I'm going to make it through this.

As always, with love and thanks,
Bob and Mo

P.S. On a lighter note, I'm crying as I'm writing this and freaking out the poor, young kid who's setting up the bed. I'm sure he's thinking,"why me God, why me??"


Anonymous Karen Bennie said...

Oh Moe..so so very sorry it has come to this..I will continue to pray for both you and Bob, your right, time is precious and u have used it wisely by making Bob happy and comfortable..again, so sorry and you both will forever be in my prayers....

February 11, 2013 3:07 PM  
Anonymous Bonnie said...

Hi Mo and Bob,
Prayers and love sent for you both.I'm glad the morphine is making Bob comfortable. Having just made this hospice journey with my Mom,i feel your pain Mo. Just keep holding onto each other,cry,laugh, keep on talking to each other. God has you both in the palm of His hands...Your friends and family's prayers and support will help carry you through this..

Isaiah 41:10
Fear not,for I am with you. Do not be dismayed.I am your God..I will strengthen you;I will help you;I will uphold you with my victorious right hand...

Love and prayers..Bonnie Humphries

February 11, 2013 3:28 PM  
Anonymous Anonymous said...

My love and prayers are with you both. Jean

February 11, 2013 3:34 PM  
Anonymous Anonymous said...

Dear Mo and Dr.Bob, so very sad to read this update . I hope your experience with hospice is as good as was mine and Henry's. Prayers are going up for Bob's comfort and for that Peace that we all yearn to understand. Much love to you both . Suzanne

February 11, 2013 3:37 PM  
Anonymous Anonymous said...

Dear Mo and Bob, My heart goes out to you. May your love and the love of those close by give you strength to get through these tough days. Hold tight to your wonderful memories for comfort. Sharon K.

February 11, 2013 3:51 PM  
Anonymous Anonymous said...

Mo, my heart aches for you. I wish there was something I could say or do to ease the pain a little, but I know there's not. I'll pray for comfort for him & peace for you. Thinking of you:)- Bridget F.

February 11, 2013 4:38 PM  
Anonymous Anonymous said...

Dearest Bob and Mo: We continue to keep you both in our prayers as you continue on this journey! Comfort and peace to you both. Jim and Carolyn

February 11, 2013 4:53 PM  
Anonymous Anonymous said...

Praying for you Mo. You don't know how strong you are.
Hugs sent to you. MA

February 11, 2013 5:11 PM  
Anonymous Anonymous said...

This is a difficult journey you will both share. Enjoy your time together. Praying for you. Jenny

February 11, 2013 7:14 PM  
Anonymous Anonymous said...

... and i was crying while reading this!!! Will definetly pray for both of you..and yes.. what a great gift he is and you are to him also!!! love, thoughts and prayers to you!! mdf

February 11, 2013 8:09 PM  
Anonymous Anonymous said...

sending kind thoughts and prayers, embrace your time together

February 11, 2013 10:07 PM  

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