It’s been two weeks since I posted on social media about the journey of my Myelodysplastic Syndrome (MDS). Facebook friends and people whom I do not see often are beginning to ask what has happened since my last post. They say, “You’ve been silent.”
Two weeks ago, I started another round of a mild dose of chemo by IV. I had Decitabine for three days in a row at MD Anderson Cancer Center. I had no adverse reaction to the drug. My problem is that my bone marrow does not manufacture white blood cells, red blood cells and platelets like a normal person or a person who has controlled MDS.
For the last three weeks, I have received platelets via transfusions three times a week and red blood cells once a week for the last two weeks. We still have a Friday appointment to see if I squeak by with a count high enough to not need any blood. The platelets are another story. A normal low of platelets is 140,000. I have 1,000.
Yesterday we met with my oncologist, Dr. Guillermo Garcia-Manero. He is very concerned that I have not had a platelets boost from the transfusions. He emphasized that at these low platelet numbers, the primary concern is bleeding in the brain or lungs.The hope is that my platelets will rebound now that I’m 14 days past chemo treatment. He doubled my dose of Eltrombopag, which for some people has successfully raised platelet count. He also started me on a 4 week cycle of oral Prednisone steroid starting at 60 mg. This could increase platelets, if my immune system is preventing platelet production.
So I am armed with whatever Dr. Garcia-Manero can put in my body at this time to try to jump-start those platelets. The rest is left to prayer.
Twenty-two years ago I had single by-pass open heart surgery. None of our three children were married yet and two were still in college. I prayed I would recover, which I did, so I could see them all graduate from college, marry and start their families. God granted me that. Now when I pray, I sometimes think I’m being greedy. Now I’m asking to be with my grandchildren for many more years. I have so much more I want to teach them. Is God telling me I already got one extension on life and I’m back asking for more? I feel guilty, but I do want more. Tommy, my kids and our grandchildren need me.
Each of our children and their spouses have been to the hospital to sit with us during the long days at MD Anderson. The grandchildren 12 and over have been allowed onto the treatment floors. They all provide entertainment and love and laughter. It certainly helps the time go by.
Yesterday my oncologist encouraged us to continue to pursue the stem cell transplant possibility. After going through the three hour orientation at MD Anderson two weeks ago, we learned that the insurance I have with Humana will not cover stem cell transplant at MD Anderson. However, it is covered at Methodist Hospital. Dr. Garcia-Manero was very open to me receiving a transplant there. He thinks we should start the process to check for matches in case we decide to go that route. It’s a long, hard process for someone my age, with no guarantees. It’s hard to think about it.
So that’s the latest, my friends. I feel good. My energy is good. I don’t feel sick, but I am. I believe in miracles. I believe in prayer. I believe in you and the power of prayer. Thank you for your love, concern and prayers. Love to you all, Judy
July 13, 2016 at 11:20 PM |
Sending you love.
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July 13, 2016 at 11:33 PM |
Thank you, Brenda. I certainly did miss being with all our Handiquilter friends at SLC Market. Everyone said they had a wonderful time. I appreciate you.
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July 13, 2016 at 11:29 PM |
You have LOTS of prayers behind you!
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July 13, 2016 at 11:34 PM |
Thank you for your prayers, Nancy. They warm my body. Hugs to you.
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July 13, 2016 at 11:38 PM |
Love you guys!
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July 14, 2016 at 7:01 AM |
And love right back to you, Suzy and David.
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July 13, 2016 at 11:47 PM |
I have continued praying Aunt Judy. So glad to hear from you. I just got onto your WordPress earlier this evening wondering how you were doing. Love and hugs to you and your sweet family. Love seeing the pictures from the family Utah trip too!
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July 14, 2016 at 7:02 AM |
Thank you for your prayers, Liz. I miss seeing you all, but keep up with you and family through Facebook. Give my love to all your family.
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July 13, 2016 at 11:48 PM |
Judy, I’m still praying and send you good vibes. I miss seeing you in the office when I’m there. I desperately want God to answer your prayers in the positive. ❤
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July 14, 2016 at 7:03 AM |
I miss being in the office a couple of times a week, too, and seeing everyone. Thank you for your continued prayers, Vicki.
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July 14, 2016 at 12:31 AM |
My prayers and my thoughts go with you as you have treatment, and I wish you the very best results.
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July 14, 2016 at 7:05 AM |
Thank you once again D’Anne for your prayers. They are much appreciated. Have a great day!
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July 14, 2016 at 6:05 AM |
Judy you have my continued prayers. He has plans for you, you know that. It’s not being greedy! You do have many blessings in your life and I pray that it is in His will for you to live many more years of a robust life, passing wisdom on to new generations. Hugs and prayers for you.
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July 14, 2016 at 7:06 AM |
Jenny, I appreciate your prayers and thoughts. I will hold onto them today. Hope to see you this fall. Hugs.
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July 14, 2016 at 6:29 AM |
Judy. You’ll be in my daily prayers. May the peace of Christ be with you during this difficult time. Sincerely, Mary Serafini
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July 14, 2016 at 7:09 AM |
The “peace of Christ” is such a blessing. Thank you for asking for that on my behalf, Mary. For the most part I am peaceful. I appreciate your daily prayers. May you have peace in your life, too.
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July 14, 2016 at 7:02 AM |
Love and hugs, Judy.
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July 14, 2016 at 7:10 AM |
Thanks, Barbara. Same to you. Have a good day in your studio sewing up more quilts, I imagine.
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July 14, 2016 at 7:21 AM |
Prayers for you and your family –
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July 14, 2016 at 7:30 AM |
Thank you, Mary Jo. Prayers are much appreciated. Have a great day!
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July 14, 2016 at 7:37 AM |
I am praying for you, Judy. You should not feel greedy asking God for another save! It is His heart’s desire for you to be fully restored to great health, just as it is yours. I will be specifically praying for that platelet count of yours to soar as if on eagle’s wings immediately! Sending you a hug, Kay
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July 14, 2016 at 7:19 PM |
Thank you so much, Kay. Platelets soaring…what an exciting image.
It would be so assuring if my counts had gone up a little bit when I get blood work done again tomorrow. So good to hear from you.
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July 14, 2016 at 8:07 AM |
Judy, my heart aches for you. I have been thinking of you everyday since your last posts.
Thank you for writing. I pray that somehow they will find the right cure for you. My aunt had a white blood count problem and had transfusions as well on a weekly basis for years. I hope you are eating and moving around a little as well. You are so beautiful and I will continue to think and pray for you.
May God Bless you and keep you safe.
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July 14, 2016 at 7:22 PM |
Dear Pat, I appreciate your thoughts and prayers. I have no problem with eating and moving around. I wonder how I can feel so good and be so sick. The bruising all over my body is evidence, but that’s about it. Hope to see you this fall.
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July 14, 2016 at 8:11 AM |
So beautifully written and expressed! You are in my thoughts, my heart, and my prayers. You have been so blessed in this lifetime so of course you cannot help but want more. We are only human in this lifetime after all! You have such a good and positive attitude and you are so surrounded by the most incredible light and love. I pray that you will have more time.
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July 14, 2016 at 7:24 PM |
Oh, bless you for your kind thoughts and prayers, Michele. It warms my heart. Thank you so much.
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July 14, 2016 at 8:38 AM |
Judy you have been in my prayers and thoughts and know that shall continue until His healing hands carry you through to recovery. Lots of love and hugs coming your way.
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July 14, 2016 at 7:26 PM |
Oh, Carol, that would be great if “His healing hands carry me through to recovery.” With statements like yours I can’t help but stay positive and keep the faith. Thank you.
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July 14, 2016 at 8:56 AM |
You must have been reading our minds. I was just wondering myself what has happen since your last message. You are one of the bravest & strongest people I know & I join others in praying for you to receive your miracle of healing. Love you Judy
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July 14, 2016 at 7:29 PM |
Well, Betty Jo, you and Andra and Michelle carried me through open heart surgery 22 years ago. I’m so accepting of your prayers once again. Thank you so much. Love you, too.
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July 14, 2016 at 9:51 AM |
Do we need to go donate platelets? Who matches you for stem cell—I am willing to do anything for you! Rebecca
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July 14, 2016 at 7:35 PM |
MD Anderson is always in need of blood and platelets. They would welcome your donation. I don’t know if you can donate in my name. My blood type is A+. We haven’t done anything as far as finding a match for stem cell transplant. Siblings are usually the best hope, but my siblings are older than I am and not in great health so they aren’t candidates. Children are usually a 50% match. There is a bank of unknown donors they search, if there is no family match. Rebecca, you are so kind to offer. Thank you so much.
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July 14, 2016 at 11:27 AM |
Prayers for you and the family. Hope your platelets level raises with the additional drugs.
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July 14, 2016 at 7:36 PM |
Thank you, Jackie. That’s a great hope.
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July 14, 2016 at 12:59 PM |
Is there anyway we can donate platelets or any other way to help?
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July 14, 2016 at 7:40 PM |
MD Anderson has a blood bank within the hospital where they take blood and platelets, but you live in Utah. Maybe when you come to Houston in the fall you might have a spare minute to do that. Such a kind offer, Charlotte. Thank you so much.
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July 14, 2016 at 1:12 PM |
Thinking of you and hoping for the best. I especially loved all the Utah pictures from your 50th anniversary celebration. Best of times!
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July 14, 2016 at 7:42 PM |
Thanks, Judy. The 50th Anniversary celebration was the best. It’s amazing I was able to go. We had a wonderful family celebration all together under one roof. Such special days.
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July 14, 2016 at 2:47 PM |
As always – I so appreciate your update. My thoughts and prayers are with you. You have so much to teach/share.
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July 14, 2016 at 7:43 PM |
Oh, Ricky. Thank you. Keep playing that piano. You know how I love it. Love to you.
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July 14, 2016 at 4:00 PM |
Judy and Tom. Austin and Nana (Beeville ’66). We have received your prayer request via Nardie. You are now on our prayer list. Proverbs 17:22 is the answer along with the healing touch of our precious Lord.
Looks like you are over at Methodist. Let us know where and we will try to come by.
Love and prayers. A & N
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July 14, 2016 at 7:52 PM |
Dear Austin, Such a good verse from the Bible: Proverbs 17:22
“A cheerful heart is good medicine, but a crushed spirit dries up the bones.” I will keep that near me as a reminder. I am not in the hospital. We go to MD Anderson every Monday, Wednesday and Friday for blood work, review and transfusion at this time, but we go back home when I am finished. Thank you for your prayers.
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July 14, 2016 at 6:26 PM |
You are NOT being greedy my friend!! I KNOW you have longevity in your genes! Ruby was such a roll model!
Hugs yes BIG {{HUGS}} and only positive thoughts and prayers!
You need to get strong…. Quilt Festival….is coming! Love you!
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July 14, 2016 at 7:54 PM |
You made me chuckle. I do so want to be at Quilt Festival. It’s going to be a banner year up on the third floor in the Education Department. I’m certainly striving for that. I’ll do my best to be there. Thank you for your prayers, Pam. Hope I see you in the fall.
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July 14, 2016 at 10:28 PM |
You have my prayers dear one. Miracles do happen and also you are in the best of care there at MD Anderson. And I send my hugs too.
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July 14, 2016 at 10:50 PM |
Thank you, sweet cousin. Hope I see you this fall. Hugs back to you.
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July 14, 2016 at 11:13 PM |
You are definitely not greedy! I am reminded of an old saying “where there is life, there is hope”. Strength, healing and PLATELETS!!!! Lots and lots of platelets!
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July 15, 2016 at 6:23 PM |
Thanks, Katrina. I like your way of thinking.
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July 15, 2016 at 1:30 AM |
Sweet Judy & Tommy, I have followed your journey and am in awe of your courage and strength. I am praying for both of you and for platelets. I pray God will answer your prayers for more time with your loved ones. You are one brave lady. Love you. Carolee
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July 15, 2016 at 6:26 PM |
Carolee, thank you for your prayers and kind thoughts. We had good news today. My platelets were at 3,000. To be out of the woods I need to get to at least 20,000, but we’re on the right path. Miss seeing you. Hope all is going well in your world.
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July 15, 2016 at 5:55 AM |
Praying for you, your family and lots of platelets. (And you’re definitely not being greedy. You’re being generous because you want to continue giving to those you love.)
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July 15, 2016 at 6:27 PM |
Praying for those three things are so welcome. Thank you, Gail. I do have so much more to give. Have a great weekend.
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July 15, 2016 at 9:08 AM |
I hope and pray that each new day will dawn with the hope for healing and better days ahead. God is not through with you yet!
Love & blessings to you, Tom and all of your family,
Mike Kelley
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July 15, 2016 at 6:29 PM |
Hi, Mike. So good to hear from you. Tommy joins me in thanking you for your prayers. They are so appreciated. Hope all is going well in your life. Have a great weekend.
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July 15, 2016 at 4:07 PM |
Thank you for this update Judy. I want to let you know I remember you in my prayers everyday for heaven to smile on you and angels to watch over you, make every day the best you can, love and sincere best wishes Judy. Liz Harrison.
Sent from my iPad
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July 15, 2016 at 6:32 PM |
Dear Liz, Ruth and I were just talking about you yesterday and that we would have your positive, English self in our office again very soon. We can’t wait. Thank you for your continued prayers. That means so much to me. You know I am making the best of each day. I learned it from you. See you soon.
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August 3, 2016 at 11:36 AM |
Many prayers!! You are an inspiration to many!
Blessings
Maggie Castleman
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August 3, 2016 at 9:23 PM |
Thank you, Maggie. It’s a roller coaster ride with blood counts up and down. I so appreciate your prayers.
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September 29, 2016 at 4:33 AM |
I am praying for you Judy. I was treated for cancer at Methodist Hospital and my husband is still here because of the skill of the doctors there so I will be praying that you continue to have excellent care from the doctors here in Houston.
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September 29, 2016 at 8:41 PM |
Thank you for your prayers. I have started the process of stem cell transplant at Methodist Hospital. MD Anderson won’t accept Humana Health insurance for stem cell transplants. I’m still hoping and praying it does not come to that, but my oncologist wanted me to start the process of finding a donor. Best of luck to you and your husband’s cancer treatments. It must be a wonderful feeling to say “I was treated for cancer…” It would be a miracle to be able to say that in the past tense.
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September 30, 2016 at 11:48 AM
Oh Judy, I am praying for you and for God to give you strength. Thanks for posting. Thinking good thoughts
Sent from my iPhone
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