Well over 100 days!
Been awhile to write, but recovery has been going fine. In this blog, no news is good news. Overall, I’m feeling much better. My biggest complaint is fatigue. But that’s normal. My providers keep reminding me that it can take months before patients feel like their energy is back. My issues are some GI stuff, that is being considered likely weak GVHD. I started taking a new medicine combo for the GI issues: a corn-oil infused with a mild steroid for upper GI and another that helps with lower GI stuff. The hundred day marker was on February 24, so now I’m in the 150s I suppose. I haven’t kept too close of tabs on my days like some patients do. I just prefer to check in with them now and again and get surprised with how far along I’ve come.
Currently, I’m going into the clinic on Monday mornings to check labs: a full blood panel and a metabolic panel, plus a CMV test. This happens on the 1st floor, and I then go upstairs to the Bistro Cafe and get a breakfast sandwich and a coffee and read the Seattle Times on my phone. Then I cruise up to the 4th floor, wait a minute in line to sign in, and then wait in the lobby until about 15 minutes past my appointment time when I get called back by the assistant who takes a weight and the vitals, asks me if I have fallen in last 30 days and if allergies have changed, and then walks me to the room. Five minutes later (now around 30 minutes past appointment time) I see the provider. I rotate seeing either my doctor or the nurse practitioner, and we go over the labs and talk about any other issues. I’m tapering the immunosuppressant I take, Cyclosporin, lowering the dose 25% every month through June. As we drop it, we look for any GVH flares. So far so good.
It’s nice to that it’s down to once a week. And nice that I live in Seattle. I’m always grateful for my 30 minute commute when I hear people talk about commuting from Puyallup, or Tacoma, or Bonnie Lake (another exurb).
In other areas of life things have been picking up. Bree and I have started going away for the weekends again, a big part of our pre-transplant life. My counts have been stable and pretty good, and I’ve been feeling fine, so I’m comfortable being up to 3 hours away from Seattle. And if I’m in a major city, then whatever distance eg Portland, SF. We went down to Portland for Byrne’s retirement celebration from Bonneville Power Administration in early March. He was retiring after 33 years of public service in the federal government, most of it being a risk analyst for BPA, but one year in the Forest Service as well. It was nice to hear a bit about his work side of life and partake in the festivities. Alpen was also beginning to crawl, and it was fun for the family to witness that milestone. We’ve also did a trip to Biz Pt, and yesterday we got back from a weekend at Mike’s cabin. On Saturday Myra, John Arthur, and I painted another Bob Ross and it felt good to concentrate on art and laugh about how frustrating oil paints can be for the beginner and then add on some of John’s funny comments, and it was a jolly good time. It’s been really nice to get out of town again, and nice to be feeling good enough to enjoy the company and activities.
Alpen has been growing and is now 18 lbs 11 oz. He had his 1 year check-up on Thursday. Yep 1 year! Hard to believe. His birthday was March 29th, and we celebrated with family here at our house. Alpen dropped his cake slice, but readily moved on to the next one, which he also dropped. Briana filmed the sequence, and it is up on Briana’s facebook and is hilarious. At his appointment all went well, he got his vaccines, and checked-out OK from Dr. Bays. Alpen is making up for his early arrival into this world, and putting on the pounds to lift him to the 15% for 1 year olds. Dr. Bays came in ecstatic after seeing the growth chart plot. Briana and I were, of course, super pleased as well. I feel so fortunate that so far Alpen has nice eating habits: no known allergies, down to try anything, rarely refuses food, and likes to eat but not overeat. Hopefully these attributes stick around as long as possible.
Alpen is also pulling himself up and crawling around the house. Faster and faster each week. Which made us to some more baby proofing in March. His fig plant moved into our room, crib was dropped, dresser strapped to the wall, the WIFI caged. His room is pretty close to completely baby proofed, which makes us feel good. For the rest of the house, we’re still waiting to see what he gets into. He’s been oodles of fun lately and definitely happier now that he can move himself from place to place.
I’ve been working a bit more for Garden Cycles which has gotten me excited about killing weeds again. It’s been part-time hours, and none of it is putting my transplant in peril: I’ve been mostly entering data and brainstorming solutions to company issues, leaving the invasive species killing up to others. It’s a good situation for me until I get off immunosuppressants.
Since I’m not supposed to work around dirt, some of the Garden Cycle crew helped out in feb and march and removed some weeds from the backyard and planted some bare-root plants I bought. The backyard looks way better and it’s on its way to a native plant revival! I love seeing the buds of the plants we plant pop out. I’m going to get a lot of pleasure watching the cycles of these new yard plants this year. I’m currently popping my head up from the computer screen to see a squirrel pull at the Jute fabric that was put down by Garden Cycles to protect the soil on the steep hillside back there. It’s amazing the squirrel’s mouth dexterity, seemingly able to bite more fabric while maintaining a mouthful of existing fabric. That reminds me, earlier today I peered into the robin’s nest on the support beams under the front deck: and it has 3 eggs! I realized I can monitor the nest through the slats above the deck with a flashlight. Unfortunately, the robin flushes when you walk to that section of the deck, so we’ll have to be conscientious of that until the nest fails or until the hatchlings fledge. Spring is here! Feels good! All for now!
Currently, I’m going into the clinic on Monday mornings to check labs: a full blood panel and a metabolic panel, plus a CMV test. This happens on the 1st floor, and I then go upstairs to the Bistro Cafe and get a breakfast sandwich and a coffee and read the Seattle Times on my phone. Then I cruise up to the 4th floor, wait a minute in line to sign in, and then wait in the lobby until about 15 minutes past my appointment time when I get called back by the assistant who takes a weight and the vitals, asks me if I have fallen in last 30 days and if allergies have changed, and then walks me to the room. Five minutes later (now around 30 minutes past appointment time) I see the provider. I rotate seeing either my doctor or the nurse practitioner, and we go over the labs and talk about any other issues. I’m tapering the immunosuppressant I take, Cyclosporin, lowering the dose 25% every month through June. As we drop it, we look for any GVH flares. So far so good.
It’s nice to that it’s down to once a week. And nice that I live in Seattle. I’m always grateful for my 30 minute commute when I hear people talk about commuting from Puyallup, or Tacoma, or Bonnie Lake (another exurb).
In other areas of life things have been picking up. Bree and I have started going away for the weekends again, a big part of our pre-transplant life. My counts have been stable and pretty good, and I’ve been feeling fine, so I’m comfortable being up to 3 hours away from Seattle. And if I’m in a major city, then whatever distance eg Portland, SF. We went down to Portland for Byrne’s retirement celebration from Bonneville Power Administration in early March. He was retiring after 33 years of public service in the federal government, most of it being a risk analyst for BPA, but one year in the Forest Service as well. It was nice to hear a bit about his work side of life and partake in the festivities. Alpen was also beginning to crawl, and it was fun for the family to witness that milestone. We’ve also did a trip to Biz Pt, and yesterday we got back from a weekend at Mike’s cabin. On Saturday Myra, John Arthur, and I painted another Bob Ross and it felt good to concentrate on art and laugh about how frustrating oil paints can be for the beginner and then add on some of John’s funny comments, and it was a jolly good time. It’s been really nice to get out of town again, and nice to be feeling good enough to enjoy the company and activities.
Alpen has been growing and is now 18 lbs 11 oz. He had his 1 year check-up on Thursday. Yep 1 year! Hard to believe. His birthday was March 29th, and we celebrated with family here at our house. Alpen dropped his cake slice, but readily moved on to the next one, which he also dropped. Briana filmed the sequence, and it is up on Briana’s facebook and is hilarious. At his appointment all went well, he got his vaccines, and checked-out OK from Dr. Bays. Alpen is making up for his early arrival into this world, and putting on the pounds to lift him to the 15% for 1 year olds. Dr. Bays came in ecstatic after seeing the growth chart plot. Briana and I were, of course, super pleased as well. I feel so fortunate that so far Alpen has nice eating habits: no known allergies, down to try anything, rarely refuses food, and likes to eat but not overeat. Hopefully these attributes stick around as long as possible.
Alpen is also pulling himself up and crawling around the house. Faster and faster each week. Which made us to some more baby proofing in March. His fig plant moved into our room, crib was dropped, dresser strapped to the wall, the WIFI caged. His room is pretty close to completely baby proofed, which makes us feel good. For the rest of the house, we’re still waiting to see what he gets into. He’s been oodles of fun lately and definitely happier now that he can move himself from place to place.
I’ve been working a bit more for Garden Cycles which has gotten me excited about killing weeds again. It’s been part-time hours, and none of it is putting my transplant in peril: I’ve been mostly entering data and brainstorming solutions to company issues, leaving the invasive species killing up to others. It’s a good situation for me until I get off immunosuppressants.
Since I’m not supposed to work around dirt, some of the Garden Cycle crew helped out in feb and march and removed some weeds from the backyard and planted some bare-root plants I bought. The backyard looks way better and it’s on its way to a native plant revival! I love seeing the buds of the plants we plant pop out. I’m going to get a lot of pleasure watching the cycles of these new yard plants this year. I’m currently popping my head up from the computer screen to see a squirrel pull at the Jute fabric that was put down by Garden Cycles to protect the soil on the steep hillside back there. It’s amazing the squirrel’s mouth dexterity, seemingly able to bite more fabric while maintaining a mouthful of existing fabric. That reminds me, earlier today I peered into the robin’s nest on the support beams under the front deck: and it has 3 eggs! I realized I can monitor the nest through the slats above the deck with a flashlight. Unfortunately, the robin flushes when you walk to that section of the deck, so we’ll have to be conscientious of that until the nest fails or until the hatchlings fledge. Spring is here! Feels good! All for now!
Sometimes you gotta stop and think. Alpen is a sitting pro now.
Standing in his transit pants from Petey's mom! Buses abound.
Standing at the coffee table, looking at a plant sample of spirea I brought home. I had to take it away after he started to eat it
Picture explain it all.
Alpen's 1st birthday
Alpen's first time sitting in grass this year. He was amazed for 3 minutes and then started eating it.
Mom Marian here. Wonderful to read this and think how far you've come. Love your sense of humor, too, that lifts everyone around you.
ReplyDeleteLoving that Alpen is trying to eat everything, but in moderation. Very sad you didn't post your Bob Ross paintings :(.
ReplyDeleteSo glad to hear that things are going well! Alpen is looking super cute and glad to get an update. Thinking of you guys out east.
ReplyDeleteThis is the best kind of update. In light of the fact that no news is good news, I am super glad that the blog is down to a very low roar these days, but I have to say I do just plain ol' enjoy your writing and am glad to get a fix. Hopefully see you in Seattle soon!
ReplyDeleteGreat following your blog Derek. Hope we reunite at some point in the future. Regards, Anders
ReplyDeleteSomehow just now reading this post! So glad to hear how things have been going. Looking forward to going on some weekend adventures with the Lovebuch crew as soon as we're back in Seattle. Sending love!
ReplyDelete