It's Tuesday morning (June 9th) and it's raining here.
I heard on Thursday, May 21st that "they" wanted me in Seattle arriving the week of June 2.
That was pretty short notice, and I asked about pushing it back, but since the two weeks following were booked out, it would have been that week or the week of the 23rd. So, rather than spending June fretting about going or giving Jesus two more weeks to heal me (which he can still do here), I came.
When this was first floated as an idea about a year ago, I was more concerned about where I would live and who would be my caregivers (required after the transplant) than the process of the transplant itself. God has been so good, providing me a 2 bed, 2 bath apartment in a place with a shuttle (in case it rains or I'm not feeling well) to the clinic every 20 min and the grocery store 2 x a day. The apartment is at the very end of the hall, it's a corner apartment well away from the construction directly on the other side of the building and with a balcony and view of Lake Union.
Now I am much more concerned about the treatment. I have been fascinated with health, the human body and alternative ways to maintain wellness for years. I have also educated myself on the side effects of many things they are wanting me to take and I'm not happy about this situation.
Things I'm thankful for:
I like this little corner of Seattle (South Lake Union/Capitol Hill). I like walking around and am grateful for the exercise and that my body loves it even with low hemoglobin. (I'm currently at 6.0. The faculty here don't know what to do with that low number, but I've adapted. So I don't get transfusions unless I'm symptomatic. Which I haven't been since arriving.)
The food here is amazing! They have a farm-to-table cafe at the clinic, the snacks they give you in the infusion room are organic, the takeout is on another level (we found the best Thai restaurant either of us has ever tasted! Like: THE best EVER! We ordered from them again and round 2 was even more delicious than the first time.)
Rick and I have been laughing a lot a lot a lot. He is my champion. He set me up here with everything I need and then some. He even brought me flowers (he didn't read the manual, haha--no flowers and plants allowed. But I'm good until I start the chemo on the 23rd of June.)
It is a minor miracle that my donor is able to get harvesting lined up in this time of covid for a fresh marrow donation. Fresh will work best for me (as opposed to frozen) and it's possible.
Somehow, someone found donors even though I was told both over the phone and in writing that it would cost 40K-110K to perform the search, my insurance wouldn't cover it, but they wouldn't start the search without letting me know. When I asked who paid for it, she looked a bit and said, "It's in the past." Thank you Jesus!
SCCA is one of the best facilities in the nation for bone marrow transplants. They have been doing it longer and have a higher rate of success than any other clinic. They also have two Nobel Prize winners. SCCA stands for Seattle Cancer Care Alliance. The alliance is made of 3 parts: Fred Hutch Research and Development, the Clinic, and the University of Washington Hospital.
Interesting things:
After I get the transplant, if I commit a crime and leave skin on the scene, they will look for me. If I leave blood at the scene, they will be looking for a male with O+ blood. Currently I am blood type A-. This isn't a problem, transplant-wise. In fact, male donors are preferred. For some reason there is less GvsH with male donors. And neither the Rh factor or the type will be a problem.
I've gotten lots of compliments on my hair, mostly the color. "Thanks, I chose it myself!" I have different wigs and hats in my Amazon cart. I like the look of some of the cosplay wigs, but hear that they're kind of like bras-- you want to take it off as soon as you get out of public.
When people with cancer have this procedure done, it works best if they have a little graft vs. host disease, because they need to fight off cancer in their system. For bone marrow issues (like me), they try to completely eliminate graft vs. host because it's not necessary, therefore it will be a little easier for me. I actually get to keep some of my own immune system (as opposed to cancer patients). I'm happy about this, because it has worked really well for me.
Medically:
The facility is very thorough. I've had four blood draws in 5 days. I have had 2 or 3 appointments every day last week and this week. So far, I have had an EKG, a Thoracic ECHO, a bone marrow biopsy, meetings with my NP, with my team nurse, with my doctor (3 separate), platelet transfusions twice, one blood transfusion, 2 prescriptions, 2 negative covid tests, every kind of possible blood test. Still to come this week: Nurse orientation (my nurse and scheduler stay with me the entire time, the doctors and NPs rotate each month), GYN visit, Blood draws, Dentist, Social Work visit, Medical Assistant visit, Nutrition visit, and a Pulmonary Function test.
My "Day 0" is July 2. They will be giving me oral chemo in the clinic starting June 23 for 4 days and then I will go to the UW hospital for four more days of IV chemo and ATG. July 1st will be my rest day, and then the transplant takes place July 2. They think I will be in the hospital for 2 or 3 weeks and then I will be back at my apartment and that's when I need a caregiver and have pretty strict orders about how to eat and prepare food because my immune system will be rebuilding.
After "Day 0", I will be here for 100 days. I will have 3 more bone marrow biopsies during that time and appointments at the clinic will be 2-3X/week. I hope to be home for my birthday. That would be 102 days after transplant, but day 100 falls on a Saturday.
Seattle: Everything is still closed down, so that's kind of a bummer. Even fun groups and things that were offered to SCCA patients such as yoga, mindfulness, gong sound baths, caregiver training (now online), are no longer available. :( And we get free tickets to cool things like Mariners games that aren't happening. About half of the people here (Seattle in general, not merely the cancer patients) wear their masks outside while they are walking. They tend to cross the road when they see people without masks coming. It's just different. As in "scene from apocalyptic movie" different.
We are required by law to compost and they have special biodegradable bags. So there are 3 separate waste containers in my apartment, and 3 separate places that they go when they leave here. It's really easy, they recycle almost everything and I want to know who gets the compost. If I lived here, I'd want in on it.
Which leads me to...Missing:
My garden. I got to plant it, and did get to enjoy some greens, radishes and asparagus before I left.
Hopefully it won't frost before I return.
My doggie Monte. He's the best, such a love.
My friends and family. Thanks so much for your prayers and encouragement! I know some of you are thinking about visiting. I'm not sure how I'll be feeling or what my schedule is. Hopefully things will be opened back up by the time I get out of the hospital though!
Streaming. Setting up wifi that is strong enough for streaming has been frustrating. I'm not a fan of WAVE Broadband.
Prayer requests:
Most of all that I experience the peace, presence and power of Holy Spirit.
I'm still believing and open to any kind of a miracle for which Jesus paid full price, once and for all.
It's 2020 and anything can happen! :)
For full-spectrum healing. Spirit, soul and body. I still wonder what "happened" and if I could have done something differently.
That I not get in my own way with some sort of placebo-like belief system that works against me due to knowing the side-effects of everything they want to do. I know that people who trust their doctor do much better with even the worst stuff.
For my caregivers: Rick, my sister and my parents and maybe my cousin Andi and her amazing daughter. She is a doctor and they are tons of fun. It is a lot of responsibility and a sacrifice (but the food is great and maybe the Seahawks will be playing in the fall!)
The speediest of speedy recoveries. The kind that leaves the doctors shaking their heads.
For my donor, that all goes well on his end of things.
Thanks so much for praying!
My address is:
Sonja Hurt c/o Pete Gross House
525 Minor Ave. #414
Seattle, WA 98109
I heard on Thursday, May 21st that "they" wanted me in Seattle arriving the week of June 2.
That was pretty short notice, and I asked about pushing it back, but since the two weeks following were booked out, it would have been that week or the week of the 23rd. So, rather than spending June fretting about going or giving Jesus two more weeks to heal me (which he can still do here), I came.
When this was first floated as an idea about a year ago, I was more concerned about where I would live and who would be my caregivers (required after the transplant) than the process of the transplant itself. God has been so good, providing me a 2 bed, 2 bath apartment in a place with a shuttle (in case it rains or I'm not feeling well) to the clinic every 20 min and the grocery store 2 x a day. The apartment is at the very end of the hall, it's a corner apartment well away from the construction directly on the other side of the building and with a balcony and view of Lake Union.
Now I am much more concerned about the treatment. I have been fascinated with health, the human body and alternative ways to maintain wellness for years. I have also educated myself on the side effects of many things they are wanting me to take and I'm not happy about this situation.
Things I'm thankful for:
I like this little corner of Seattle (South Lake Union/Capitol Hill). I like walking around and am grateful for the exercise and that my body loves it even with low hemoglobin. (I'm currently at 6.0. The faculty here don't know what to do with that low number, but I've adapted. So I don't get transfusions unless I'm symptomatic. Which I haven't been since arriving.)
The food here is amazing! They have a farm-to-table cafe at the clinic, the snacks they give you in the infusion room are organic, the takeout is on another level (we found the best Thai restaurant either of us has ever tasted! Like: THE best EVER! We ordered from them again and round 2 was even more delicious than the first time.)
Rick and I have been laughing a lot a lot a lot. He is my champion. He set me up here with everything I need and then some. He even brought me flowers (he didn't read the manual, haha--no flowers and plants allowed. But I'm good until I start the chemo on the 23rd of June.)
It is a minor miracle that my donor is able to get harvesting lined up in this time of covid for a fresh marrow donation. Fresh will work best for me (as opposed to frozen) and it's possible.
Somehow, someone found donors even though I was told both over the phone and in writing that it would cost 40K-110K to perform the search, my insurance wouldn't cover it, but they wouldn't start the search without letting me know. When I asked who paid for it, she looked a bit and said, "It's in the past." Thank you Jesus!
SCCA is one of the best facilities in the nation for bone marrow transplants. They have been doing it longer and have a higher rate of success than any other clinic. They also have two Nobel Prize winners. SCCA stands for Seattle Cancer Care Alliance. The alliance is made of 3 parts: Fred Hutch Research and Development, the Clinic, and the University of Washington Hospital.
Interesting things:
After I get the transplant, if I commit a crime and leave skin on the scene, they will look for me. If I leave blood at the scene, they will be looking for a male with O+ blood. Currently I am blood type A-. This isn't a problem, transplant-wise. In fact, male donors are preferred. For some reason there is less GvsH with male donors. And neither the Rh factor or the type will be a problem.
I've gotten lots of compliments on my hair, mostly the color. "Thanks, I chose it myself!" I have different wigs and hats in my Amazon cart. I like the look of some of the cosplay wigs, but hear that they're kind of like bras-- you want to take it off as soon as you get out of public.
Medically:
The facility is very thorough. I've had four blood draws in 5 days. I have had 2 or 3 appointments every day last week and this week. So far, I have had an EKG, a Thoracic ECHO, a bone marrow biopsy, meetings with my NP, with my team nurse, with my doctor (3 separate), platelet transfusions twice, one blood transfusion, 2 prescriptions, 2 negative covid tests, every kind of possible blood test. Still to come this week: Nurse orientation (my nurse and scheduler stay with me the entire time, the doctors and NPs rotate each month), GYN visit, Blood draws, Dentist, Social Work visit, Medical Assistant visit, Nutrition visit, and a Pulmonary Function test.
My "Day 0" is July 2. They will be giving me oral chemo in the clinic starting June 23 for 4 days and then I will go to the UW hospital for four more days of IV chemo and ATG. July 1st will be my rest day, and then the transplant takes place July 2. They think I will be in the hospital for 2 or 3 weeks and then I will be back at my apartment and that's when I need a caregiver and have pretty strict orders about how to eat and prepare food because my immune system will be rebuilding.
After "Day 0", I will be here for 100 days. I will have 3 more bone marrow biopsies during that time and appointments at the clinic will be 2-3X/week. I hope to be home for my birthday. That would be 102 days after transplant, but day 100 falls on a Saturday.
Seattle: Everything is still closed down, so that's kind of a bummer. Even fun groups and things that were offered to SCCA patients such as yoga, mindfulness, gong sound baths, caregiver training (now online), are no longer available. :( And we get free tickets to cool things like Mariners games that aren't happening. About half of the people here (Seattle in general, not merely the cancer patients) wear their masks outside while they are walking. They tend to cross the road when they see people without masks coming. It's just different. As in "scene from apocalyptic movie" different.
We are required by law to compost and they have special biodegradable bags. So there are 3 separate waste containers in my apartment, and 3 separate places that they go when they leave here. It's really easy, they recycle almost everything and I want to know who gets the compost. If I lived here, I'd want in on it.
Which leads me to...Missing:
My garden. I got to plant it, and did get to enjoy some greens, radishes and asparagus before I left.
Hopefully it won't frost before I return.
My doggie Monte. He's the best, such a love.
My friends and family. Thanks so much for your prayers and encouragement! I know some of you are thinking about visiting. I'm not sure how I'll be feeling or what my schedule is. Hopefully things will be opened back up by the time I get out of the hospital though!
Streaming. Setting up wifi that is strong enough for streaming has been frustrating. I'm not a fan of WAVE Broadband.
Prayer requests:
Most of all that I experience the peace, presence and power of Holy Spirit.
I'm still believing and open to any kind of a miracle for which Jesus paid full price, once and for all.
It's 2020 and anything can happen! :)
For full-spectrum healing. Spirit, soul and body. I still wonder what "happened" and if I could have done something differently.
That I not get in my own way with some sort of placebo-like belief system that works against me due to knowing the side-effects of everything they want to do. I know that people who trust their doctor do much better with even the worst stuff.
For my caregivers: Rick, my sister and my parents and maybe my cousin Andi and her amazing daughter. She is a doctor and they are tons of fun. It is a lot of responsibility and a sacrifice (but the food is great and maybe the Seahawks will be playing in the fall!)
The speediest of speedy recoveries. The kind that leaves the doctors shaking their heads.
For my donor, that all goes well on his end of things.
Thanks so much for praying!
My address is:
Sonja Hurt c/o Pete Gross House
525 Minor Ave. #414
Seattle, WA 98109
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