Last hello from Seattle!

Hi from Seattle! Day 95

This will probably be my last post for awhile. I'm getting ready to go home! My last appointment here ends at 4:30 on Friday the 9th, so we will be coming home on the 10th. A birthday present from my team and the Creator of time.✨ 

I'm experiencing a lot of emotions as things wrap up here. The last few days have been beautiful and clear in Seattle. I've fallen in love with this city, even though it wasn't fully open and was in the news several times. I explored a lot of it on foot and some lakes by car and met some very kind people. I am so very grateful. I'm crying as I write this; reflecting on how good God has been to me. When they first mentioned the possibility of going through a bone marrow transplant, I was honestly more worried about where I would stay and who would be willing or able to be my caregiver. We have a great place in a great location (clinic, Whole Foods, corner store and delicious restaurants within walking distance) with a great view. I've also gotten to spend lots of quality time with my sister and my husband, for which I'm very thankful. I had a fantastic summer that I'll never forget. 

Great news! My blood pressure is okay, I don’t have headaches at night and am sleeping much better. I’m off of a few more meds and don’t have heartburn or diarrhea. I’ve also been tested for Covid weekly (18 times) and nada.  Every time I say “no” to all the screening questions, I realize I have a lot to be thankful for. I have my taste and smell! 😃

I did end up losing a bunch of hair after all, and even though I still have hair, it is now very thin. The weird thing is it typically starts falling out about 2 weeks after the transplant and fall out for around 2 weeks. When I asked (around day 25) how long it would keep falling out, my PA said, "around day 40". I am now at day 95 and am just slowing down. I lost a bunch in the shower this morning. When my doctor switched my protocol, she said, "And you may end up not losing all your hair!" I interpreted this optimistically as I had prayed for this. I'm thankful for the hair I have. And hats and headbands. 😅

One day a couple of weeks ago, there was a packet in my mailbox at the clinic with 2 books, a thick handout of powerpoint slides (to go with a YouTube video class), and a clinical spiral notebook. These were all about Graft vs. Host disease, Long Term Follow Up and the first year after transplant. They really don't tell you what you need to know before you need to know it. I guess I assumed that when I left, I would be back to "normal", meaning before my blood counts got very low. They say the most common complaint during the first year is fatigue. This was very disappointing to hear. There are restrictions on things I can do the first year because of being on immunosuppressants: no gardening, no new pets, no previous pets in your bed, no public hot tubs. All three of these are the sad ones for me, although I don't know if I really would have actually gotten another dog and now I don't have to worry about it. I have absolutely LOVED seeing all the city dogs going for their walks while I go for mine. 

I've learned more about myself, how to trust and grieve, and much more than I could share or process now. I've learned how to ask for prayer when I need it; THANK YOU for praying for me. I've also learned a lot about procedures, prescriptions, side effects, what's more important and less important. The medical part has been very interesting to me, as I've been fascinated with health and the human body for as long as I can remember, and knew just enough to scaffold and learn more.

While the oral medicine, pulmonary lung function appointments and others went really well as far as having no sign of GVHD, the skin biopsy on my hip did show "possible minimal GVHD". Please continue to pray for me. There is really nothing that “causes this to happen” well... sun😭in the case of skin but the immunosuppressant meds are to prevent it. I have a FB friend who had a bone marrow transplant in December and has to travel every two weeks to receive two days of IVIG therapy because she has GVHD of the GI tract. She has been in a lot of pain and her mouth hurt so badly at times that she can't sleep. Please say a prayer for her too: her name is Sessy, and she is only in her 20's. She is strong and has a very supportive husband, but it's getting difficult for her physically and emotionally. I know your prayers will help her; I've experienced it.💜

The next 3 days I walk up to the clinic for meetings and labs and on Friday before the last team meeting, I get my Hickman line taken out of my chest! This will make showering a LOT easier! Things are going very well and I'm optimistic and really looking forward to returning home. (If only I didn't have to pack up and clean this place😅) I SO appreciate your prayers and comments and love and Holy Spirit insights that you pass along! Much love, Sonja