Saturday, July 17, 2010

Moving in one direction, Forward....

Great news...I was discharged from the program yesterday! What a day. Del and I arrived at the Stem Cell Suite bright and early to avoid sitting in traffic. After labs and a full check up by Dr Seldin and Dr.Mehta, they confirmed my graduation.

Hayleigh made another tray of mini chocolate cupcakes for the staff. (this is the third one!) She had made a tray 2 weeks ago and they were gone in a flash, so she made another tray with 4 times as many for this past Wednesday and they disappeared in 10 minutes. So in celebration of my last day, she made even more cupcakes which we brought with us.(and no we didn't snack on the ride in!) Everyone in the Suite was thrilled of course with the "breakfast bars" and they didn't last long. If they weren't chocoholics before...they are now. (The Conways taught them a few things too while we were there!)

In some ways yesterday was bittersweet as well. While thrilled that I was being discharged, I will miss all of the new friends who have been by my side since May. I can't wait to see them again in two weeks...mmm, what should we bring them next time?? In this picture: Mary Kate, Jane, Anthony, me and Jim. Unfortunately missing from this picture are Teresa, Janet, Mona and Aura.
 
We also got a chance to visit with Brian and Tina, a new patient and his wife whom we met during the evaluation period in March. Brian is also an ironman, and ultra marathon competitor who was diagnosed with CLL and Amyloidosis. He is just beginning his Stem Cell Transplant program, and with much the same gusto and optimism as I did.My prayers will continue for them as well as Robert and Martha, Cila and Steve, as they continue on their individual journeys.
After hugs all around and a thankful, yet tearful goodbye, Del and I gladly made our way back home.
Lots of instructions to process as I begin 100 days of healing. (3 pages!)While I am recovering at home I will need to continue to monitor my temperature (anything over 100.5 requires a phone call to hematologist), my fluid retention, my blood counts, and my blood pressure. I cannot have outside visitors unless they have been immunized (no live virus'), no pets, small children, and I have to wear a mask in public places (should I even dare to venture out) to protect me from unknown lurking bacteria and diseases. The good news is that I can begin to exercise as I regain some energy (and Red blood cells!) and introduce thick skinned fruits and vegetables (Yeah!) to my diet next week (as tolerated!). I actually walked a 1/2 mile on the treadmill on Thursday and 3/4 mile Friday! I know that doesn't sound like much, especially for someone who is used to running several miles a day, but for now I'll take it. Baby steps...all the way to the finish! (I think Hayleigh is starting to get nervous...I'm not sure she really believed me when I said we would be running a marathon together someday...she obviously doesn't know her own mother!!)
Phase 3 will continue, 99 days and counting, but first I need a nap...:)
Love to all,
Cheryl

10 comments:

  1. Cheryl,

    You look beautiful. Congratulations on your graduation. Now you must rest, rest, rest - and then rest some more. There will be plenty of time to do everything that needs to be done. Thanks for keeping us all updated. I am in awe of you!

    Love,
    Margaret

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  2. Today you gave me goosebumps!! Congratulations Cheryl, onward and upward!! Love The Gilmartin Family

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  3. Cheryl, you have brought us support, wisdom, guidance and love-- we will be thinking of you everyday through Brian's journey and holding you up as an Amyloid mentor of sorts! Thank you so much for your generosity of spirit and words- we will be in touch!! love, Tina & Brian

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  4. Congratulations Cheryl...Love of my life, Michael, made a discovery 20 Apr 2010 and 93 days later we'll have pinpointed which type of Amyloidosis he has. We've excellent specialists here in Dallas and we trust them. 22 July, Thursday is the 'revelation' date for the type and a treatment plan. We're saturated w/facts and we are armed w/faith and trust in God...He's leading this charge and we're doing our part. Michael's caringbridge site:
    http://www.caringbridge.org/visit/michaelbeall
    also http://balancedandunafraid.blogspot.com
    If I've written you twice...forgive...like I said, I'm saturated...you're in our prayers. Vasce

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  5. Hi Cheruyl,

    Yay!!!! Nothing like the feeling of being "home" - you can be called "Dorothy" for awhile, there's no place like home, no place like home, no place...I think it might be useless to tell you to give your body time to adapt but at least listen to it very, very closely :) I have no doubts you'll bounce back quickly. Hang in there as patience will still be needed, daily!

    Hugs and love

    Vicki

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  6. Hey Cheryl -
    We are behind you all the way...both figuratively and literally! Congratulations on your graduation. From birthday to graduation in less than 3 weeks! Way to go! Robert is out of the hospital as of yesterday. Kidneys still not on line...yet...but he is determined that his kidneys will be back on line soon. Until then, daily dialysis. We are SO happy to be out of the hospital but we understand your feelings about missing the team so well. They really become a part of your literal life line. You go...keep that immune system growing...and know you are forever in our thoughts and prayers for everything to go fine.
    Hugs,
    Martha and Robert

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  7. Keep that countdown clock and keep blogging. We look forward to it. Our prayers and good thoughts continue for you, Fred, the kids and Del...
    Love,
    Caryl, John, and the girls

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  8. Cheryl-

    So happy to hear you are home - and are continuing to send love and prayers that this difficult chapter will soon have a happy ending. We think of you and your family often and know that your strength and optimism have inspired us daily!!

    Love,
    Beth Pisacreta and family

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  9. Cheryl,
    So glad to hear you're home and on the "treadmill" to recovery! Everyone here at Stonehill has been thinking of you often and praying for you....
    Love, Mary

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  10. Cheryl,
    Congratulations on your graduation!! Thrilled to hear that the treatment and your body's response has been going as well as it could go. Funny story...talking to Uncle Jack the other day and asking whether he had heard any news regarding how you were doing, I told him I had sent Kate an email but hadn't heard back and he said 'why don't you just email Cheryl' I told him I can't seem to figure out her blog page and how to add comments...long story short...as technology savvy as I thought I was, our 77ish year old uncle had to explain to me how to use your webpage and where I had to go to write a comment...who would have thought...anyways, happy to hear you're home and hope that your progress although it maybe too slow for you continues to progress smoothly all the way to the finish line. My thoughts and prayers are with you, Fred, Del and the family. Love to all, Kim

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