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.
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.
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.
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.
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.
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.
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.
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.
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