fullygoldy (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
fullygoldy) wrote2006-04-03 09:27 pm
fullygoldy) wrote2006-04-03 09:27 pm
A Month's Worth
Some of this stuff is a repeat for regular readers here, but this is the update I sent out to my family's yahoogroup today:
Well, as you can see below, Wayne has gently kicked me in the butt to get me to post an update about barley52 (thanks, Wayne). The real kicker is, Aunt Jean had to call this weekend and ask for an update to get me to sit down and type. Sorry about that.
barley52 (thanks, Wayne). The real kicker is, Aunt Jean had to call this weekend and ask for an update to get me to sit down and type. Sorry about that.So, in early March, B got to go up to the UW Bone Marrow Transplant Center and get his blood drawn to begin the search for a marrow donor. Yay! The search could take as few as 3 mos or as long as a year. From what we've learned, there is actually a donor out there somewhere, we just have to keep B healthy long enough to find that person. Fortunately for us, he's been remarkably healthy. I guess we can chalk that up to all the 'clean living' we do, LOL. We are so fortunate that the diagnosis and treatment plan were decided so quickly. This gives us the highest odds of success.
Really, since the first of Jan, clean living has been our way of life. We all wash our hands or sanitize them incessantly. We've got an extra HEPA filter running in the living room, plus a great, washable, electrostatic filter in the furnace. We already had that, thanks to my stint as a mold remediator. Our vacuum has a HEPA filter as well, and it gets run frequently. The bathrooms are being cleaned much more often than usual. All the fresh food gets washed thoroughly. We've become very particular about what we touch in public (door knobs/handles, elevator buttons, hand rails). We carry hand sanitizer and sanitizing wipes in the cars and in my purse. The grocery cart handle and the steering wheel of the car are regular targets for sanitizing. Friends who are visiting wash up on arrival. If it all seems a bit obsessive, well, yeah, we feel that way too. On the other hand, the Dr. and his staff are extremely impressed and pleased with how long B has managed to stay healthy so far. I'm hoping we'll have the same track record for spring cold season.
The blood growth hormones are working, the Nupagen (for white cells) is really working hard, which means B's neutraphil count has been well above the 1000 threshold for over 2 weeks straight. This is wonderful because it means he can eat all the raw veggies he craves, indulge in fungal delights such as gorgonzola stuffed olives and portabello stroganoff, and he gets all the fresh ground black pepper he can stand (which is quite a lot!). It also means he can go out in public without a mask, although we still take the same precautions about contacting "stuff." We even get to eat in restaurants (hard to do from behind a mask).
The first week he didn't wear the mask to the clinic, the staff almost didn't recognize him
At this point, they do want to limit whole blood transfusions as much as possible, because more transfusions make it harder to identify a really good donor match. In fact, the treatment center called soon after his blood draw to ask about how many transfusions he'd had to-date, because they were getting wonky readings.
We're trying to stay in good spirits, do our homework, and stay healthy. We've both experienced episodes of anxiety and insomnia, and Mavis has mentioned insomnia too. Rupert's sleep-walking has increased in frequency too. I thought he had about outgrown it, but we've had some funny episodes that past couple of months. To combat these things, we've established some new routines at home. First, every time anyone comes home, they get a hug from everyone who is already there, as soon as they're in the door. It helps us to get our quotient of hugs for the day,a nd it reminds us to check in and connect with each other on the emotional front. We've also established a standing Sunday brunch. We sit down to a leisurely meal every Sun. around 10 or 11 am. Even though we sit down to dinner together almost every night, this meal feels more intimate. We talk about family memories and we get silly, and we l i n g e r while lovely music plays in the background. If we feel like having a fancy Sunday dinner too, we'll do it, but we're just as likely to make the meal easy. Both of these traditions have done a lot for me personally, and I can see that they mean something to each of us. Rupert lingers over hugs, even though he'll never ask directly for one. Mavis is more talkative at brunch than at dinner, and we get more insight into her thoughts on a wide range of topics.
Really, since the first of Jan, clean living has been our way of life. We all wash our hands or sanitize them incessantly. We've got an extra HEPA filter running in the living room, plus a great, washable, electrostatic filter in the furnace. We already had that, thanks to my stint as a mold remediator. Our vacuum has a HEPA filter as well, and it gets run frequently. The bathrooms are being cleaned much more often than usual. All the fresh food gets washed thoroughly. We've become very particular about what we touch in public (door knobs/handles, elevator buttons, hand rails). We carry hand sanitizer and sanitizing wipes in the cars and in my purse. The grocery cart handle and the steering wheel of the car are regular targets for sanitizing. Friends who are visiting wash up on arrival. If it all seems a bit obsessive, well, yeah, we feel that way too. On the other hand, the Dr. and his staff are extremely impressed and pleased with how long B has managed to stay healthy so far. I'm hoping we'll have the same track record for spring cold season.
The blood growth hormones are working, the Nupagen (for white cells) is really working hard, which means B's neutraphil count has been well above the 1000 threshold for over 2 weeks straight. This is wonderful because it means he can eat all the raw veggies he craves, indulge in fungal delights such as gorgonzola stuffed olives and portabello stroganoff, and he gets all the fresh ground black pepper he can stand (which is quite a lot!). It also means he can go out in public without a mask, although we still take the same precautions about contacting "stuff." We even get to eat in restaurants (hard to do from behind a mask).
The first week he didn't wear the mask to the clinic, the staff almost didn't recognize him
At this point, they do want to limit whole blood transfusions as much as possible, because more transfusions make it harder to identify a really good donor match. In fact, the treatment center called soon after his blood draw to ask about how many transfusions he'd had to-date, because they were getting wonky readings.
We're trying to stay in good spirits, do our homework, and stay healthy. We've both experienced episodes of anxiety and insomnia, and Mavis has mentioned insomnia too. Rupert's sleep-walking has increased in frequency too. I thought he had about outgrown it, but we've had some funny episodes that past couple of months. To combat these things, we've established some new routines at home. First, every time anyone comes home, they get a hug from everyone who is already there, as soon as they're in the door. It helps us to get our quotient of hugs for the day,a nd it reminds us to check in and connect with each other on the emotional front. We've also established a standing Sunday brunch. We sit down to a leisurely meal every Sun. around 10 or 11 am. Even though we sit down to dinner together almost every night, this meal feels more intimate. We talk about family memories and we get silly, and we l i n g e r while lovely music plays in the background. If we feel like having a fancy Sunday dinner too, we'll do it, but we're just as likely to make the meal easy. Both of these traditions have done a lot for me personally, and I can see that they mean something to each of us. Rupert lingers over hugs, even though he'll never ask directly for one. Mavis is more talkative at brunch than at dinner, and we get more insight into her thoughts on a wide range of topics.
For my part, I've been on the receiving end of such kindness from so many people from strangers to dear friends, that I find myself attempting to be more patient with other people, and more giving of warmth, affection and kindness. I'm finding a lot of wisdom in the motto "love shared is love multiplied." Today was the first work day after the time change, and it was truly a delight to be able to take a walk after dinner (after 7 pm), with the sun above the horizon the entire time. Mavis joined B and me for the 'short block,' ~ half a mile, which we had to do at B's reduced pace, but that just means we had more time in the sun :) We talked baseball strategy for most of the way (the new season is now underway), because B and Rupert are co-managing a fantasy league team. B used to do this yearly, back in SC, but had dropped it. He got back into it this season at my urging. I figure if you've got to be cooped up in the house, you might as well have something fun to pass the time with. Baseball is his favorite pastime, so.... brilliant, right?
Ok, I guess that's a month's worth. I'll try to do better in the future, but no guarantees. After all, I'm related to people who take 3 yrs to write a letter, then give it up for a phone call <wicked grin>. /family post
I've got stacks of old holiday cards that have handwritten messages in them, but never got addressed and stamped. You'd think that would be the easy part! LOL So, LJ pals, you can see that this format has actually improved my communication skills. OR at least it has increased the frequency of communications, FWIW.
I've got stacks of old holiday cards that have handwritten messages in them, but never got addressed and stamped. You'd think that would be the easy part! LOL So, LJ pals, you can see that this format has actually improved my communication skills. OR at least it has increased the frequency of communications, FWIW.