Posts Tagged ‘bone marrow’

Day 14 of 28 in Isolation

November 19, 2016

 

Yes, my isolation at MD Anderson Hospital is half over. Before I could enter my room I had to take a shower with a product that is used before surgery. Then I covered-up with a disposable robe, mask, head and shoe covering. Once I entered my isolation room I could throw away all the outer coverings and be in my normal clothes with slippers or non-skid socks. I haven’t left my room since.

I don’t have a shower or a flushable toilet in my room. Each day I bathe with warm, disposable moist cloths. I wash my hair in the sink. I feel clean. I have never cared for camping, but several people have told me it’s much like camping.img_3413

Family and friends are not allowed to enter my room unless they are on staff here at MD Anderson. I have had plenty of family and friends visit through a double paned window in the family room that connects to my room. I love their visits.

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Hi from me.

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Hello back from Holly.

For those who do not know my situation, here’s an explanation. In 2006 I was diagnosed with Myelodysplastic Syndrome (MDS). This is cancer of the bone marrow and a precursor to Leukemia. To date I still am diagnosed with MDS.

Until March 2015, my MDS was not advanced enough to require treatment. I was under the infrequent care at MD Anderson, but my internist monitored my blood counts in between those visits. Bone marrow produces white blood cells which controls your immune system, red blood cells, which produces your oxygen, and platelets, which coagulates your blood and keeps you from bleeding internally as well as externally.

My first chemo treatment was part of a clinical trial taking Decitabine by tablet. After four months of treatment the drug  started working. Then I had seven months without transfusions. Unfortunately, we came to a dead-end. What a disappointment. It was back to frequent platelets transfusions again. Then I started a low dose of Decitabine given intravenously along with Promacta by tablet to try to raise my Platelet count. It didn’t work.

In the meantime we had an orientation at MD Anderson and Methodist Hospital for a stem cell transplant. A search went on to find a match for me for a stem cell donor. Several potential donors were found with a 10 out of 10 match. However, after two different bone marrow aspirations and a biopsy, it was determined I am not a candidate at this time for a transplant.

Instead I was put in the hospital in isolation to receive two different kinds of chemo that completely wiped out my bone marrow. So on Day 14 I have no bone marrow which means no immune system. Everyone who enters my room is covered from head to toe with disposable gown, head, and shoe coverings and a mask. I have to recognize people by their eyes, stature and voice.

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My nurses today. The nursing staff is kind and caring.

Amazingly, the first two weeks have not been bad. I am an introvert so I get my energy by being alone. I love being with people and out and about, but like a true introvert have to retreat to solitude to be energized again. I get plenty of people contact from 5 AM until 11 PM each day. Nurses, doctor, room service, vital sign taker, and housekeeping are in and out of my room all day long.

My room, #1272, is great. It’s one of two very large rooms with a double window on the twelfth floor . There is a stationary bike, lounge chair, desk chair with desk, a rocking chair, bedside table, and bed in my room. I have made it as much like home as possible.

I stay busy with Quilts, Inc. office work through deliveries and via the internet, crafting projects, watching “The Crown” on Netflix, FaceTime with my younger grandchildren, text messaging, journaling and all the hospital stuff. The time has gone by swiftly.

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Embroidery I finished while in isolation.

 

Mail delivery and visitors have been a highlight during the day. I love the cards and fun things that have been delivered to my room.

 

I receive platelets and/or blood transfusions almost daily now. I am attached to a pump by a PICC line in my arm 24/7 that administers the transfusions and constant fluids. It doesn’t hurt. I just go about my day and night with “Tagalong” always by my side.

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Tagalong

 

Today I missed a second A & M game in College Station with my husband. It made me a little weepy the first one I missed, but today my son-in-law came to visit during the game time.

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My husband at the A&M game without me.

 

 

Our daughter and our older son’s wife will decorate our house for Christmas before I get home on December 3. They have pictures to follow in each of the boxes for each vignette. If you go back to my blog post on December 2014, you’ll get a preview of how it will look. I do the same thing every year with only a few minor changes.

From Our House to Yours

From Our House to Yours

 

I look forward to all our family being together and celebrating Christmas on December 22. Here they are all gathered at our home the day before I came into the hospital. What a wonderful family. Troy, our younger son, comes from Long Beach, California again tomorrow for a visit. Todd, our older son, who lives in Dallas, will be back again on Tuesday.img_3355-002

As I’ve said so many times, “Family is the best!” My prayer is that this treatment will work and I can be in remission to spend time with them and you, too, my friends. Much love and good wishes to you and yours. God is good. Judy

 

 

 

 

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Stem Cell Transplant

October 25, 2016

It’s the day before I move into the Hilton Americas for the International Quilt Market and Quilt Festival. It is also my birthday.

Sunday my husband and I went to James Avery after Sunday school, church, and lunch. I had chosen the wide Crosslet Ring for my birthday gift from him. While he was paying for it and giving instructions for the engraving, I went to Chico’s next door. fullsizerender-007-001

Really, I was looking for one item at our local Chico’s that I hadn’t found at the Chico’s near our office. One thing led to another, with a helpful, knowledgeable manager, and I came out with four new outfits to wear to the Fall Quilt Shows. Happy Birthday to me.img_3256-002

The Hilton and the George R. Brown Convention Center will be my home for twelve nights and thirteen days. However, each Monday, Wednesday and Friday my husband will pick me up at 6:30 am to go to MD Anderson Hospital for blood reviews, PA and oncologist visits and platelets and blood transfusions. I was diagnosed with Myelodysplastic Syndrome (MDS) in 2007, but did not need treatment until March of 2015.

Those of you who have seen me running the Education Department for Quilt Market and Quilt Festival for the last 40 years, have no fear. I will be there sporadically. I feel fine and have energy as long as I have a current platelets and/or blood transfusion.

The shows are in good hands with Jill Benge as Manager, Barbara Cline as her assistant, Marcia Barker, who takes on all our special projects and new developments, and Shannon McGaw who works part-time for Education and a great help to me.fullsizerender-005

Part of our show team will arrive for Market and the remainder will come during Festival. We couldn’t do the shows without them.fullsizerender-007

Man or woman cannot live on transfusions of someone else’s blood products indefinitely. For a while one of the chemo trial treatments worked for me. But, after seven months of no transfusions we came to a dead end. My oncologist tried other treatments, but my bone marrow just won’t function properly.

So the only thing that is left is to have a Stem Cell Transplant. When my oncologist is satisfied I am healthy enough to go through the high dose chemo process, to eliminate my existing bone marrow cells, I will be admitted to the hospital for three to four weeks. After the conditioning phase is complete, the collected stem cells will be infused in my body. My blood counts will be monitored daily and any side effects will be managed. It will be a tough time. Initially I said I wouldn’t put myself through this voluntarily, but when that’s all that’s left, I had to change my mind.

Once I have engrafted, meaning that my white blood cells have recovered, and I am eating and drinking well, I will be discharged from the hospital. For 100 days I have to have a caregiver 24 hours a day. I will be monitored at the hospital generally every day for follow-up initially and that will adjust to every other day depending on my health and needs. I’ve been told to plan on a year to get back to how I was physically before the transplant. Needless to say, I am fearful. I am sad.

I won’t be able to be in public for quite some time because of infection possibility. I will have no immune system initially. The family gatherings I treasure so much will have to wait for a while.

During this process I won’t be able to be around grandchildren who are under 14 years of age. That breaks my heart. We have a 16 month old grandson and another baby on the way.

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I will be strong and follow the rules so I can recover and have good times again with family, friends and TRAVEL. My faith, family, and friends will be of utmost importance through this process. God will be my constant companion. I won’t be alone.

Will you say a little prayer for me? God bless you and love, Judy

 


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