I had my 1st chemo yesterday. Labs first. Many tubes as they Needed many for the research study i am in. I got a "take home" fecal test. On demand I could not do that, so i am bringing it back today before my next chemo.
The dr. seems very excited for my journey. He wanted to know again how it was I got to him? I gave hime the story that a wonderful NP I had with me my whole journey went on pregnancy and did not come back. I said i was seeing her in August and wanted to cover the blood numbers. She would tell the new Medical Oncologist I was assigned to and never met. Mine went to Cedars Sinai. I told him i was bothered, so I contacted the DR's office i saw about my blood clot. Threw the COH patient portal i requested an appointment and after about 3 exchanges and phone calls, I got the person on the phone who made the calls and got approval to put in the request to see the hematologist. That is how i arrived in the Dr's office in late September 2023.
Advocating for ourselves. I must say parts of myself yesterday thought this is real. As the Dr scrolled through my numbers and diagnosis, he said i am here at the right time. If i did not do this transplant I would continue to have blood numbers flip around, little by little all that is going on now would decline. I would say I am on the cusp. This may just cure me. I met a young woman half my age who had some bad side aches last July. Had a surgery to supposedly solve the pain, but she got another test and was found though that she had leukemia. What she said? I did not ask her name. But i mentioned her to the DR. and he said her name is Alexa. Her family has 2 people with leukemia, so it is possible it is genetic. I felt so blessed to meet her, she is 3 weeks past transplant and is staying at the hotel local to COH. She said she left the transplant area at the hospital as her body was accepting the new cells and she was feeling great.
Today is my second day. I got the pic line in, and Dennis and Oliver completed the job. My father and brother are named Dennis. Both of these fellows were excellent and explain as they went using the monitor to show the needle into the vein, and confirming the sounds i was hearing was my blood swishing through the vein. Oliver said i was very in tune to the moment to hear the sound and know. Many say nothing as they complete the procedure.
The infusion nurse? She is in the Freedom Day hospital. That area is next to the infusion area I used during my chemo and treatments in 2021 and 2022. It had been for kids with cancer, but it was being renovated for some of the time as i remembered. Now it is the place bone marrow transplant patients get their infusions. One patient had finished the series and the bell was rung for him. All nurses were cheering. I think i head him say it was his 2nd time here.
My nurse was delightful. She confirmed that the Dr. was right about my 5 days if chemo. No heavy nausea has been reported by her patients. Fatigue and for some bowel issues. BUT, the 2nd one dose of chemo will cause hair loss. Yep, I had about 1.5 hours thinking I would not lose my hair. I had already stopped at the Positive image center to ask how much notice they need to cut my hair. I asked Mayra there if she would show me how to style my curly wig. I said I never wore it as I thought my initial move from long hair for 40 years to short hair was too much of a shock in November of 2023. This wig was too much. I had another short one i wore. I attended a convention wearing that wig and a number of people said they loved my new hair style. I think it is important to talk about this subject. For cancer patients and those who face the loss of their hair, my hope is their hospital or treatment facility has a department that address this and assists. The COH has one, that had been in a small room in the women's center in 2021 when i got my hair cut there. It did move into a wing of the hospital being renovated. A beautiful set of rooms I will post a picture of later.
I woke up today having cereal and coffee. Next is a lot more water.