This is just a quick update as far as how my schedule is going and how to pray for me.
I arrived here in Seattle on June 3, and now its the 27th. This whole first month has been a lot of very thorough testing, a few transfusions, some education and homework and meetings with different professionals. The first part was more concrete appointments and testing with physicians from various fields, and more recently I've made an advance directive, I'm applying for a grant, participating in research studies, counseling, nutrition, pharmacy, integrative medicine zoom calls, etc.
Lately they've been more about what's coming up right ahead. They don't really burden you with too much knowledge of the chemo, radiation and medications until you need to know. And then you get it from 3 different angles and then pick up everything from the pharmacy, and talk with that pharmacist too, for a total of 4 people. Which is still not enough to preclude me from having to refer to my medication chart. It would be a bit disheartening if I didn't believe that with God all things are possible. In the past, I have been very resilient when it comes to medication and have not suffered severe side effects, even when they are common. So I'm keeping with that plan.
Also, since this has been the season of me feeling good, and the weather has also been beautiful, we have been exploring different neighborhoods and restaurants. It's a very hilly city, and we are benefitting from the varied terrain. There is a neighborhood walk-up Indian restaurant that sells Rose Petal Lattes. I waited until I really wanted a coffee to try one, that was yesterday and it was much better than I was expecting. They also add nutmeg and cardamon. I have gone all in on loving Seattle, adopting it, certain to be forever grateful for the newness of life that began here. It helps that it's the sunny time of year!
Back to my schedule. Today, June 28th I have my first transfusion of Fludarabine, a well-tolerated chemo. I have this for 3 days and then a rest day, then on July 2, two doses of light radiation and finally my bone marrow transplant the same day.
After that, I start getting better! My body accepts the new cells and begins to graft them in and build a new immune system. This is where I really would appreciate prayers for assimilation, building, health, cooperation, etc. That I accept the new material, that my thirsty marrow be grateful for the backup strength and work well together making me strong and robust, energized, dynamic and vibrant. After two years of weekly platelet transfusions and somewhat less frequent blood transfusions, eventually these will subside, as my marrow starts to make healthy blood cells. It's interesting that for the past bit of my life, though my white blood cell count has been low, the focus has been on platelets and hemoglobin. Now, the focus is a bit more toward neutrophils, a type of white blood cell that is the first line of defense against infection. For this reason, the food preparation, cleaning protocols, and some weird rules about herbal supplements, plants and pets are in play. The thing I'm really looking forward to is having a normal level of hemoglobin. Normal is between 11.5 and 15.5 g/dL and I've been pretty much living between 5 and 7 for the past year. So I'm thinking I could probably go to night school or something! :)
Rick and I have been almost having a second honeymoon if it wasn't for the appointments and the homework. (Watching YouTube videos on how to prepare food and things like that.) The role of caregiver is a pretty serious responsibility and he asks a lot of good questions. We manage to laugh a whole lot, and explore new things each day. Today we made a practice run to the University District where I'll be checking in to the hospital on Thursday. While we were there, we saw restaurant row with every little restaurant from every country on earth represented. We had no idea were to start and ended up having Thai food because starting tomorrow I won't be able to enjoy spring rolls with peanut sauce for a long time. Anyway, he makes sure I am taking care of myself, eating well, taking my meds, he's got the app with my schedule and test results on it, AND he has set up an office in our little apartment with his laptop, a printer, and files and things from home to work on. Of course he's also got his phone. He's juggling a lot with a great attitude and I'm very thankful for him!
This may be my last post for awhile. After the transplant, then starts my 100 days of monitoring here in Seattle. This is the protocol no matter how well I do. Within the first two weeks, the graft starts to “take” and then it takes over more and more. If there are any new developments or prayer requests, I’ll keep you posted. Right now, prayers for strength, a good attitude, receiving the donor marrow well, and prayers for my donor, a 35 year old man from the United States. That he would be blessed in a variety of ways. I’m so thankful for his sacrifice. Giving marrow isn’t an easy procedure.
I arrived here in Seattle on June 3, and now its the 27th. This whole first month has been a lot of very thorough testing, a few transfusions, some education and homework and meetings with different professionals. The first part was more concrete appointments and testing with physicians from various fields, and more recently I've made an advance directive, I'm applying for a grant, participating in research studies, counseling, nutrition, pharmacy, integrative medicine zoom calls, etc.
Lately they've been more about what's coming up right ahead. They don't really burden you with too much knowledge of the chemo, radiation and medications until you need to know. And then you get it from 3 different angles and then pick up everything from the pharmacy, and talk with that pharmacist too, for a total of 4 people. Which is still not enough to preclude me from having to refer to my medication chart. It would be a bit disheartening if I didn't believe that with God all things are possible. In the past, I have been very resilient when it comes to medication and have not suffered severe side effects, even when they are common. So I'm keeping with that plan.
Also, since this has been the season of me feeling good, and the weather has also been beautiful, we have been exploring different neighborhoods and restaurants. It's a very hilly city, and we are benefitting from the varied terrain. There is a neighborhood walk-up Indian restaurant that sells Rose Petal Lattes. I waited until I really wanted a coffee to try one, that was yesterday and it was much better than I was expecting. They also add nutmeg and cardamon. I have gone all in on loving Seattle, adopting it, certain to be forever grateful for the newness of life that began here. It helps that it's the sunny time of year!
Back to my schedule. Today, June 28th I have my first transfusion of Fludarabine, a well-tolerated chemo. I have this for 3 days and then a rest day, then on July 2, two doses of light radiation and finally my bone marrow transplant the same day.
After that, I start getting better! My body accepts the new cells and begins to graft them in and build a new immune system. This is where I really would appreciate prayers for assimilation, building, health, cooperation, etc. That I accept the new material, that my thirsty marrow be grateful for the backup strength and work well together making me strong and robust, energized, dynamic and vibrant. After two years of weekly platelet transfusions and somewhat less frequent blood transfusions, eventually these will subside, as my marrow starts to make healthy blood cells. It's interesting that for the past bit of my life, though my white blood cell count has been low, the focus has been on platelets and hemoglobin. Now, the focus is a bit more toward neutrophils, a type of white blood cell that is the first line of defense against infection. For this reason, the food preparation, cleaning protocols, and some weird rules about herbal supplements, plants and pets are in play. The thing I'm really looking forward to is having a normal level of hemoglobin. Normal is between 11.5 and 15.5 g/dL and I've been pretty much living between 5 and 7 for the past year. So I'm thinking I could probably go to night school or something! :)
Rick and I have been almost having a second honeymoon if it wasn't for the appointments and the homework. (Watching YouTube videos on how to prepare food and things like that.) The role of caregiver is a pretty serious responsibility and he asks a lot of good questions. We manage to laugh a whole lot, and explore new things each day. Today we made a practice run to the University District where I'll be checking in to the hospital on Thursday. While we were there, we saw restaurant row with every little restaurant from every country on earth represented. We had no idea were to start and ended up having Thai food because starting tomorrow I won't be able to enjoy spring rolls with peanut sauce for a long time. Anyway, he makes sure I am taking care of myself, eating well, taking my meds, he's got the app with my schedule and test results on it, AND he has set up an office in our little apartment with his laptop, a printer, and files and things from home to work on. Of course he's also got his phone. He's juggling a lot with a great attitude and I'm very thankful for him!
This may be my last post for awhile. After the transplant, then starts my 100 days of monitoring here in Seattle. This is the protocol no matter how well I do. Within the first two weeks, the graft starts to “take” and then it takes over more and more. If there are any new developments or prayer requests, I’ll keep you posted. Right now, prayers for strength, a good attitude, receiving the donor marrow well, and prayers for my donor, a 35 year old man from the United States. That he would be blessed in a variety of ways. I’m so thankful for his sacrifice. Giving marrow isn’t an easy procedure.
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