I wanted to update that I got a call from the nurse in the transplant unit 2 days ago. Near the end of my work shift. Fifteen minutes. Seems April 1st was the day I am to start. 5 days of Fludarabine where i get the infusion and go home. I enter the hospital on the 6th day to receive Melphalan. One day of rest and the Fresh PBSC infusion.
two days of rest then Cyclophosphamide for 2 days then begin Itacitinib 200 mg for 100 days. The next day i add Tacrolimus until Day 65
Day 29 I go home to begin 2 day a week visit back to COH for weekly draws.

So I listen and am in a bit of shock. I continue my day at work doing work. I text me two sisters and head home slow. I get home and read the papers with the information the nurse sent. What concerned me most was the caregiver paper. 24-hour caregiver for 100 days? How in the world will i find someone or more than that to help. Not until i read this did, I realize what i faced. I used to think my end of life would be difficult with no children or a husband. I did think I could have had a husband and kids that were unable to help for whatever reason, so it seems I am at that place. I asked my local older sister if I could possibly stay with her or her with me when possible. Yesterday she said i cannot stay with her because as i have mentioned, she too is being treated for cancer, ovarian. Her chemo is done, but she says she cannot be around sick people and she is still not well. I must say I am not surprised. Sadly, that is just how my family is. My older brother could never help as he had real trouble being there for our mom as she was confirmed to her bed in our family home the last 3 months of her life. The younger brother is estranged. So that leaves my youngest sister who lives in western NY. She works full time. I told her i will fly her here if she can work a week or so in. She of course will come here.
Tuesday night i emailed the nurse Mary back and said i had some questions. In the hospital I need a 24-hour caregiver with me and a few other items.
Yesterday I volunteered with my local animal rescue and chatted afterward at McD's with my friend who volunteers there. Talked about it with her calmed me more. At home I messaged again to Mary that i am most concerned about the caregiver portion. I am finding thinking about it how daunting it could be to line up 24-hour caregivers. I have a number of friends I can ask to help on a rotating basis. They are retired and some are married. At the moment, I have not alerted them. I said to Mary on this email that this one issue alone may cause me to have to postpone the transplant. Also, that April 1st is too soon to get things in order. My older sister who could help at the start is visiting her daughter till April 13th. The same sister who cannot have me stay with her. Mid-day yesterday I messaged Mary to say I checked with one local sibling, and she said she cannot let me stay with her due to her own cancer journey at COH that is just winding down. Therefore, i do not family that can be there 24 hours. Also, I cannot not believe in the 15,000 transplant COH has done, no other patient has had the same issue. She final responded later in the day saying she is notifying Dr. Salman Otoukesh about the social work team to give me a call. I then went to work mid-day and got most work done for the day.
Saturday I am working with my sister to get my place into shape for when the transplant actually happens. Yes, the same sister I spoke about. This sister has never had a full-time job, so time for a lot of creative pursuits. Today she is retired from it all, so has walked through her cancer journey from July of 2023 until now with all days open to assist in her own recovery. She is super anxious to help me.

Oh yes, on the 19th i received this call later in the day, I had a morning appointment on site at the COH. I had been notified sitting in the dentist chair the 19th that my NP was not going to available, and they were to find me someone else. It was interesting as my dentist let me answer the phone once i saw it was the COH and she just waited. The replacing of my crown then began when i hung up few minutes later. My dentist knows of my journey as cancer/ chemo and meds can affect the teeth. While i waited the next hour for my new crown to be made, I got a call back from the COH. I have an appointment 1 hour later with a new DR. The next day i found out my favorite NP, the only person left that treated me on my active Breast Cancer journey is not coming back after having a baby. What??? I was so excited to talk with her about my new path as she would have been right on target helping me as always. My oncologist to worked for went to Cedars-Sanai, so I usually say her for the last year every 3 weeks. She was on pregnancy leave since August. All I can say is change is rough sometimes. Connections can be lost and just right now I am feeling that loss. The new Dr. they assigned me has been at COH since 2023. Her medical degree earned in 2017. She did not really read my chart, as there are lots of pages. Who has time. I was seeing her for my hurting left arm. She saw i was diagnosed with MDS and felt that a wait and see is a good path. I had to tell her that my genetic results with BRCA2 and the findings in the bone marrow have me not wanting to wait and see. I believe then she looked at the results with that Dr. and said she would defer to their department on that. She did a could more checks and sent me off to get an x-ray of my arm. I am not sure about her. My younger sister in NY said to give her a chance.