Posts Tagged ‘MDS treatment’

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

 

 

 

 

Saturday’s Simple Recipe Page 18 Pie Crust

December 26, 2015

When I was growing-up, my mom made a pie at least once a week. She made the most flaky, light pie crust I ever tasted. After I married, I tried following her recipe many times before I could make a pie crust I was proud to call my mom’s recipe. I think of her every time I roll out the pie dough.

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Mom and I Many Years Ago

Mom’s Pie Crust

Ingredients

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Pie Crust Ingredients and Supplies

1 cup flour

2 rounding tablespoons Crisco shortening each about the size of an egg

Dash of salt

3 tbls. cold water

Instructions

Mix shortening and flour with pastry blender. Stir to make sure all is moistened. Add 3 tablespoons of cold water. Cut through crust with fork until it starts to come together. Mold it into a ball getting all loose pieces together.

Flour a pastry cloth. Flatten pastry ball on pastry cloth and fold twice. Mom said this is what makes it flaky. Use hands to shape it the same all around. Use a sock on your rolling pin. Lightly flour it by rolling on pastry cloth. Roll dough out flat so it’s large enough to fit pie pan with some excess crust.

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Roll-out Dough

Fold crust in half and then transfer to pan. Ease in and flute edges, and then tuck under or cut off excess crust.

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Pie Crust Ready to Bake or Fill

If you are to bake the crust without the filling, prick holes in bottom and sides of crust with a fork. Bake 10-15 minutes at 425 degrees. Don’t let it get too brown.

If pie is to be cooked with unbaked pie crust, then do not poke holes in crust before baking pie.

That’s it, just three ingredients and a little practice. Don’t give up.

Because you’ve asked about my health and specifically how I am progressing with the MDS treatment, here’s an update. I haven’t had a blood or platelets transfusion for 4 months. The chemo is working. Thank you, God. I will start the ninth round of chemo on January 7, 2016. I’m doing well, and we are making plans to celebrate our 50th wedding anniversary with our family in June this coming year.

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Tom and Judy

Happy New Year to you and yours. And here’s to 2016…may it be a year full of good blessings for you. Hugs, Judy

Put Me In Coach

May 3, 2015

“God has given me this day to use as I will. I can waste it or use it for good. What I do today is very important because I am exchanging a day of my life for it.” This is a quote from Bear Bryant (1913-1983) who was an American college football player and coach. He was best known as the longtime head coach of University of Alabama’s football team.

Team sports have always been a part of my life. Growing up in the 60’s, girls were not encouraged to play sports so I was never on a team, but attended  my brothers’ football and baseball games. Their games were always a family occasion. My high school sweetheart, Tommy Murrah, whom I married, played high school and college football. He didn’t stop there, but played softball on adult recreational teams for many years. Once our children were old enough to play team sports, he coached their teams.

Now, all five of our grandchildren have tried their hand at playing baseball or softball including our three granddaughters. Two of those girls have chosen their teams on stages rather than on the field. We have spent a great part of the spring attending activities that involved our grandchildren.

Lindsey Huebner turned 12 years old the end of March. Our three grandchildren who live near-by traditionally get a day of shopping and over-night at Grammy and Granddaddy’s house without their siblings for their birthday. After we attended one of her softball games, she came to our house for the Easter week-end.

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Lindsey ready for a game on the Jaguars

After our day of mall shopping and a chair massage, we began cooking for ten family members coming for Easter lunch.

Lindsey loved the chair massage

Lindsey’s first chair massage

I hadn’t set the table or decorated it for Easter, so Lindsey did most of it. I love teaching our granddaughters the things Grammy does. I hope they will remember when they have their own homes. What a precious time it was to have her with us for fun, work, and church service.

Easter Table Set

Easter Table Set

After lunch it was Easter egg hunt time in our backyard. Our egg hunters ranged from 7-17 years old.

Easter Baskets Full

Easter Baskets Full

Our younger son and his wife, Michelle, live in Long Beach, California. She is expecting their first baby this month. Baby “T” will make six grandchildren for us. We are so blessed. Since they could not come to us, we went to see them for four days of loving them and fun. We attended a baby shower on a gorgeous California Saturday in the park. The hostesses outdid themselves with a beautiful array of all kinds of Tea Party treats for the “T” party.

Beautiful Table

Beautiful Table

We know Troy and Michelle’s baby boy’s name will start with a T, but Troy says he has to meet him and shake his hand before he’s sure what his first name will be. We know he will play sports because Troy has already checked-out the ice skating rink in Long Beach where they can play hockey. Troy has played one sport or another all his life. So the quilt I made for the baby is just that…all kinds of sports. I found a long arm quilter, Karen Shively, in my neighborhood,  who quilted it for me.

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Quilt for “T” Murrah

When Troy and my husband are together you can be sure there will be a ballgame involved. We spent one afternoon at Dodgers Stadium which was a first for Tommy. Michelle did not grow-up going to ballgames, like our family, but she has adapted beautifully and seems to enjoy them.

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Baby “T” at his First Game

Late last month we made a trip to Dallas to see our older son’s family. Madison Murrah played Alice in “You Can’t Take It With You” for her senior play. We loved seeing her perform one last time as a student of Ursuline Academy at Jesuit Theater.

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Encore Madison

It was great to be with our older son, Todd, and his family for a couple of days.

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Todd Murrah and family

Tyler Murrah was supposed to play a baseball game while we were there, but it was rained-out. We’re so proud of him. He has played on the freshman baseball team at Jesuit in Dallas this year. The Freshman season is over, but he along with two other Freshmen, were pulled up to Varsity for the playoffs. He won’t get in any games but will get to keep practicing with them.

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Tyler Gets a Single

We spent much of yesterday with our daughter, Holly, and her family. Ashton, who is seven years old, is playing machine-pitch baseball. His coach is quite a motivator. The kids love his antics and team spirit.

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Ashton & Coach Ron

Sydney joined us later in the day, after attending a birthday party. She tried baseball several years ago, but decided she likes the stage better. She is in competitive cheer and choir. Her spring choir program was this past week. I loved watching her moves. She has lots of fun singing and performing. She’s in the center with the sunglasses.

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Sydney Huebner

Yesterday, I also gave Holly a quilt I started for her after she graduated from Texas A & M in 1995. It’s made from her sorority t-shirts. Michelle Henson did a great job long arm quilting it for me. Aw, come on. I know you have lots of quilts that marinate before they are completely cooked.

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Holly’s Quilt

Tomorrow will be a red-letter day for me. I will start chemo therapy at MD Anderson Hospital. I was diagnosed with Myelodysplastic Syndrome (MDS) eight years ago. Luckily, I have not needed any treatment for my low hemoglobin until this past month. At that time I was given two pints of blood and had another bone marrow aspiration and biopsy. If the MDS goes untreated research shows that I’ll have AML in a year.

My oncologist, Dr. Guillermo Garcia-Manero, is a Professor in the Department of Leukemia at MD Anderson University of Texas. His main academic and clinical objective is to contribute to significantly better outcomes for patients with Myelodysplastic Syndrome. Dr. Garcia-Manero is the Chief of the Section of MDS in the Department of Leukemia at MD Anderson Cancer Center. One hundred percent of his research and clinical efforts are devoted to patients with MDS. So when he suggested I start a clinical trial taking Dacogen by capsule, my family and I agreed.

Tommy and I will be at MD Anderson very early tomorrow morning for at least eight hours. We’ll do the same each day through Saturday this week. The trial will last for three months and I will be closely monitored. I feel I’m in the best hands possible.

My blessings have been overwhelming as you can see by the joy our family brings to us. My prayer is that I’ll continue to see the growth of our loving children, their spouses, and children. If you could offer the same prayers for me, I’d be ever so grateful. Much love, Judy

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Put Me In Coach. I’m ready to play today.

 

 

 


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