Review: Anne has been receiving chemotherapy to fight a rare, aggressive cancer, leiomyosarcoma. After the first set of drugs were not working well enough, she was changed to a new regimen. She has scans after every third cycle to ensure the treatment is working. In July, after her first scan, she was overcome to learn they are indeed working.
The New Normal
Anne continues her chemo cycle: week one gemcitabine, week two gemcitabine and docetaxel, and then one week off. Now that Anne and her family are settling into a routine and preparing for the start of school, her mother-in-law has returned home. Anne’s son has nearly completed his driving lessons, meaning he will now be able to drive himself to and from school and soccer practice, leaving Anne and Ray one less task and worry. (I should not say that. Any parent of a driving teen will worry.)
Anne‘s incision from her surgery in January is completely healed, but after nine months of not being able to use her core muscles, she needs to build them back up. Another episode of faintness reminded Anne to listen to her body and not push it especially after week 2 of chemo. As the chemo builds up in her body, the side effects continue, but now with more intensity. We have started using the code word “bathroom challenges” for the intestinal issues. (I explain why chemo affects that part of the body here.) Her muscle aches and fatigue are slowing her down. She has started to experience tingling and coldness in her toes which is a sign of neuropathy (damaged nerve cells). Now when she receives chemo treatment she does so with ice packs on her hands and toes. This will constrict the blood vessels so less of the chemo travels to those areas of the body.
Her appetite varies greatly. One time on my way to visit she asked me to stop by Burger King. She said she had eaten more in the last two days than in the last two weeks. She knows she needs to eat but her changing taste buds, fatigue, and “bathroom challenges” leave her with little appetite. When she does want to eat though, she takes full advantage of it!
August was also time to replace her stents (see my previous blog post about stents). This time the doctors were able to use metal ones instead of plastic. While they were more uncomfortable in the beginning and Anne was given more pain meds for the first couple days as her body got used to them, these will need to be replaced every six months opposed to the plastic ones which need to be replaced every 3 months.
Anne continues to fight the side effects with acupuncture and lymphatic (strain/counterstrain) massage. She also continues to find herself blessed with good friends that step up and go above and beyond in their deeds, words, and support.
As you may recall, Anne has been planning her survivor tattoo since her diagnosis: a yellow/golden phoenix whose feathers look like flower petals wrapped in a purple ribbon (the color of LMS). For months she has been meeting a tattoo artist to design it. Anne cannot get a tattoo while receiving chemo. Her rush on the design is because her amazing surgical oncologist may be retiring soon and she wanted him to have a print of it. It is a very small gesture to show her appreciation for what he does for all his patients.
I accompanied Anne as she made a special visit to give it to him. We met her good friend also going through treatment for lunch. Listening to them talk gave me such an appreciation for their doctors and nurses. Every single patient is unique in their diagnosis, treatment, and side effects. What a huge heart every oncologist must have to provide each patient with specific, targeted, completely individualized care. Their talk gave me greater respect and admiration for all cancer fighters. Because each diagnosis is so unique, it is easy to feel alone in the fight. It makes me happy Anne has found a friend to share the journey with her. It also made me realize how often we see a bald head and think “cancer” and we assume we know what they are going through based on our past experiences. This is what Anne was worried about before shaving her head: being seen as a diagnosis (see blog post). I have learned through my time with Anne, those assumptions may be false. Your experience could be completely different than what the person in front of you is going through.
On our way from the hospital cafeteria to her special appointment, Anne’s legs were very sore and she needed to rest. (We learned later the soreness is from her Neulesta injections which increase white blood cell production to help boost her immune system.) After her quick checkup, Anne unpacked her bag of goodies to include homemade hot fudge sauce, the framed print of the tattoo design, and a handwritten letter. In the letter, Anne knew if she credited him personally with saving her life, he would deny it. Instead, she explained how she views him as an extension of God’s hand, guiding her through this journey. There was not a dry eye in the room.
What is next?
The next couple months should look much like August. Chemo, scans, injections, routine blood work, and managing side effects, while trying to maintain a “normal life.” Anne is going to try to be as active in her son’s school activities as possible, attending band and soccer events. She passed on some of her volunteering positions to others. It was a hard decision because she loves to be involved in those groups but knows that right now she just needs to focus on herself.
Follow Anne’s Journey with LMS
Review: Anne passed away due to complications from uterine leiomyosarcoma (LMS). June 8, 2019 Anne’s memorial was held at the church she grew up in. The small church quickly filled with friends and family of all ages from all the country. Boy Scout and Navy uniforms...
Review: Anne’s chemotherapy is no longer working. Her doctors will throw everything at the cancer: chemotherapy, immunotherapy, and radiation, hoping the full assault will have an impact. The reality of the brutal, aggressive nature of leiomyosarcoma cannot be...
Hail Mary Review: Anne completed three rounds of her newest chemo regiment and had a regularly scheduled CT scan to see if it was working. It was not. April 2019 Days after learning the devastating news, Anne and Ray went to the local chemo clinic to learn the...