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.
Days after learning the devastating news, Anne and Ray went to the local chemo clinic to learn the next steps. Anne’s regular medical oncologist was out of town, however, the one filling in consulted with her doctor at Seattle Cancer Care Alliance. They’ve decided to try a new chemotherapy combination that includes the drug Gemcitabine. (Anne has had this drug before with some success with sarcomas can get accustomed to a drug and begin to resist it.) He also wants to try Immunotherapy and radiation. At this point, they are going to throw everything at it and hope (and pray) something works. It is a Hail Mary.
While examining Anne, they discussed ways to make her more comfortable. Fluid retention continues to be a problem. The tumor in her abdomen (now visible through her clothing) is blocking the flow of fluid, especially from her left leg. More medications will have little effect. More protein, compression socks, elevation, and massage moving the fluid upward are all ways to help relieve the pressure. The nurse suggested some sort of support band to relieve some of the pressure (like belly bands for pregnancy).
Lastly, they will give her two liters of blood in hopes it will give her a bit of a boost and “feeling like a new person.” They needed to get a blood sample first to get the best match possible. The results of the sample are only good for 72 hours. It takes two hours to transfuse one liter of blood. There was not enough time that day, so we would have to return for that.
The nurse stayed with Anne and Ray to talk about palliative care. Anne broke down. “I’m good as long as I don’t talk about it. “ This was the first time I’ve seen her cry. “It feels like I keep getting slammed against the wall for trying to live.” She knows there is a plan. She doesn’t understand it but knows there is a plan. All she wants is more time. The more time she has, the higher the chance of finding a cure and being in the 5% that survive uterine leiomyosarcoma.
Two days later, I picked up Anne to take her to for the blood transfusion. First, we had to stop at Starbucks. It has become her routine to stop before each appointment to get Refresher and this time also a protein box. She told me she is having a “memory box” made for her son. She will fill it with letters for him to open at different milestones in his life. She sees now how her diagnosis is starting to affect him. She is still fighting but the reality is setting in.
In the waiting room, Anne ran into an old friend who stayed with her throughout the appointment. Anne showed her the notebook she started. Anne said it was one thing she could do to help ease her family’s pain. When the time comes, they will not need to worry about it. Her friend agreed and reminded her we each could be gone tomorrow. Anne replied, “Yes, but I have more of a heads-up.”
As we sat in the treatment room, I observed a sick woman not receiving treatment. The nurses are always very jovial- smiling, laughing, joking with the patients. The woman hugged and kissed each nurse on the cheek or hand. I overheard her say, “I’ll see you on the other side.” And for few minutes, the energy of the room slowed as the nurses composed themselves. It was obvious this woman has touched their lives. I was reminded once again what a tremendous blessing each nurse is to their patients.
The following week Anne’s neighbor and I took her to her radiology consult. Anne had great difficulty getting in and out of the vehicle and used the wheelchair throughout her appointment. The exam room was lined with degrees, awards, and recognitions the radiologist has received. He explained they like to target areas away from major organs. What he has seen is that Anne’s tumor is intertwined with her intestines, making it very challenging to know exactly how to attack it. Anne will have another scan done at this clinic after drinking contrast to better determine what is tumor and what is tissue. He will look at it from all angles to find the best way to reach it. He also said normally sarcomas do not respond to radiation, but they will give it their best.
We rushed home because Anne needed to use the bathroom now. Anne’s neighbor knowingly gathered her things, anticipated her every need, and prepared her bed. While getting her settled, I heard Anne begin to cry. I couldn’t hear what they were saying and did not investigate, but let them have a private moment.
This journey is getting harder but no one has given up yet. It is a difficult balance of faith and reality. Hoping, and praying, for the best – for a miracle- while preparing for the worst. I recently learned a Norwegian saying “Det er håpløst, og vi gir oss ikke” which means “It is hopeless, and we don’t give up.” This is where Anne is at right now.
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...
Review: Anne did not qualify for clinical trials and started the third line of FDA approved chemotherapy for leiomyosarcoma. March 2019 I took Anne out to lunch. Moving around took great effort and focus. At the restaurant, Anne barely touched her food and...