Archive for the ‘Chemo’ Category

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

 

Pray for Platelets

July 13, 2016

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, JudyIMG_2749

 

 

 

 

Saturday’s Simple Recipe Page 23 Tortilla Soup

February 22, 2016

A couple of weeks ago, I went on a little retreat to Bide-a-While in Dickenson, Texas with Vicki Mangum

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Vicki Mangum

and Willie Hart.

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Willie Hart with Studio Cat

Teresa Duggan was supposed to complete our foursome, but she came down with the flu. We carried on without her, but truly missed her. We spent our two and a half days creating in Miss Sue’s Studio.

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Miss Sue’s Studio

We spent our nights a few steps away in The Cottage. We each had our own unique bedroom.

The Cottage

The Cottage

The proprietor, Sue Bown, fed us morning, noon, and night. We had scrumptious meals in her large kitchen served on beautiful place settings complete with vintage linens. In the evenings she laid out an array of yummy snacks and treats in the Studio. We were well cared for in a shabby chic surrounding with so much to see and admire inside and out.

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Miss Sue

My goal was, with instruction from Vicki, to complete several pieces of jewelry I had started in classes with Kaari Meng, the owner of French General. Vicki also directed me in remaking some jewelry pieces and repairing others.

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Another Necklace Complete

I was in the middle of my tenth round of chemo during those three days, but it wasn’t a problem since I can take the drug on my own. Note one day’s dosage of chemo tablets in a dish along with my beading supplies.

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Six Chemo Tablets

I’m so thankful that the chemo treatment continues to work for controlling my MDS. Because of that, I’ve been able to continue enjoying family, friends, creating, and working for Quilts, Inc.

As a thank-you for the weekend, I sent Miss Sue a complete copy of my family cookbook that you’ve received in small doses over the last several months. She said she wants to try each recipe. I hope she does, as she’s an excellent cook. After the addition of your recipe today, there are just two more for you to receive to make your cookbook complete.

Tortilla Soup

Andra Hrdlicka, from Victoria, Texas, at the time, served this recipe to our 4-member Canton Bunch during a retreat at her lake house. Several years ago Andra, Betty Jo, Michelle, and I also got away to create, shop, laugh and eat. Andra is always a great hostess with lots to teach about entertaining.

Ingredients

3 cups cubed, cooked chicken

1 medium onion, chopped

3 garlic cloves minced

1 jalapeno, seeded and chopped from a can

1 large can stewed red ripe tomatoes diced

1 can tomato soup

6 cups chicken broth

¼ cup chopped cilantro

1 tablespoon Corn oil

1 tablespoon Worcester sauce

When serving

2 limes, juice

Shredded Cheddar cheese

Tortilla strips or broken tortilla chips

Chopped avocado

Instructions

Sauté onion, garlic & jalapeno in corn oil until tender. Add remaining ingredients and simmer one hour. Makes 6 servings.

To serve

Place cheese in bottom of soup bowl. Sprinkle tortilla strips on top of cheese. Ladle soup over all. Sprinkle with lime juice and top with chopped avocados, cheese, and cilantro.

Andra served this with a Caesar salad and the flavors were yummy together.

I’m looking forward to the next get-away, the end of April, for a retreat with women from our church. Last year was the first time it was held and I heard it was lots of laughs, enlightenment, and fun. So I was one of the first to sign-up for this second year. Hope you have some time planned in the future to get-away with your girlfriends. Would love to hear about it. Keep on living life to its fullest. Love to you all, Judy

 

 

 

Saturday’s Simple Recipe Page 20 Pecan Pralines

January 9, 2016

Mom loved her sweets. You can’t get more sugary than these pralines. She would make a batch and eat it all herself over several days and she was a tiny woman. If I was lucky, she would make a batch while I was there for a visit. Mother died several years ago at age 89, but she lives on through her recipes and the love of a large family.

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Yummy Pralines

Suzanne, my sister, and I had both written our own instructions from Mom for making her pralines, but they were slightly different. On one of Suzanne’s visits to my house we collaborated and successfully made Mom’s Pralines. Our collaboration is the recipe below.

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Suzanne and I

Mom’s Pecan Pralines

Ingredients

2 cups light brown sugar (packed)

1 cup white sugar

2/3 cup Pet canned milk

3 tablespoons butter or margarine

¼ cup Karo syrup

1 teaspoon vanilla

1 heaping cup coarsely chopped pecans

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Ingredients

Instructions

Put all ingredients, except pecans, in heavy saucepan.

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Everything in Pot

Stir and bring to soft boil. Cook for approximately 10 minutes stirring all the time. Stir in nuts. Cook 5 minutes longer while still stirring.

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Slow Boil

The test to see if it’s ready:

Drop a spoonful of candy in a cup of cold water. If you can move it with your finger so it sticks together to form a ball it is ready.

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Test If Candy is Ready

When test indicates it’s ready, let cool in pan for 10-20 minutes as you beat by hand.

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Beaten and Cooled

Drop by spoonfuls on waxed paper. It should firm-up immediately.

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Spoonfuls

Recipe makes approximately 44 small candy pieces.

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44 Spoonfuls

Like Mom, I’d like to eat the whole batch. Today was Day 3 of Chemo by tablet. I can’t eat two hours before or after I take the tablets. So I consciously did not start this candy-making until I had passed the 2-hours-after mark. You can’t eat just one. I dare you. Much love and much sugar to you today, Judy

 

 


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