In a couple weeks it will be six months since my transplant. If I had a desk job I had to be at 40 hours per week, I could do that, but I would have a lot of sick days—2 or 3 per month plus the monthly day-long trip to Nashville for checkup. I also would not be able to guarantee that I could come in at the same time every morning. There were a number of times in June that between an upset stomach and hemorrhoids, I wasn't fit for the public until 10 a.m.
I wrote that to add my story to the several I've read about how quickly one can go back to work after a bone marrow transplant. The best I've heard is a guy who was back to work full-time after two months!! Another man told me he couldn't work full-time for five years, and then he relapsed with a different form of blood cancer.
My job's not like that, though. I'm the boss again, so I get to set my own hours, and I can do a lot of work from home. Some days I'm up early, and I get in 12 hours of research, writing, and being available by computer and phone for the folks at work and for the church. Sometimes, I need a nap by mid-day.
The last couple days were rough. I'm weaning off of steroids. The only steroid I'm taking is Prednizone. I was taking 30 mg, and they weaned me down to 10 mg. Then they got me off Cellcept, an immunosuppressive. Now that I'm done with that (since June 18), they had me drop to 7.5 mg on the Prednizone.
At the same time, they had me lower the only other medicine that suppresses my immune system because there was too much of it in my blood.
The result was that Tuesday and Wednesday of this week reminded me of February in the hospital. I went down hard. I slept from Monday night at 7 pm until 5 pm Wednesday morning with only a few waking hours. I was exhausted, and I felt as purposeless as I had in the bad days in the hospital.
Wednesday morning, I decided to get up and go to "water day" with the other folks in my community. I tried sleeping all day Tuesday, and that didn't help, so I just pressed on Wednesday morning. I carried chairs down to our big 60'x90' tent, and I watched kids (and adults) shoot each other with water guns while I chatted with friends and walked around a bit to try to get my energy up.
The result? I practically collapsed by noon and slept hard and deep for three hours.
Today, I got up feeling no better, but I had a Christian writers guild that I wanted to go to in Collierville, about and hour and a half from my home. I was driving with a good friend who is the manager of my business and semi-officially the head elder of our church. I was really looking forward to the writers guild and to the time spent with my friend. So I got up and went.
I'm not sure what happened. I had a delightful time, and my energy grew the whole day long. I'm typing this after 11 pm, and I feel as good as I've felt since I've been back home.
I do have to say the last couple days got me to slow down, focus on God again, and wind up feeling really at peace and under grace. Only two months, and I had let myself get really busy and somewhat tense again! I promised myself I'd never return to that kind of lifestyle after I got out of the hospital.
I should know better than to trust my well-meant promises to myself.
But grace came in the form of a couple really rough days and, once again, in the form of my beautiful and amazing wife. She gathered up my whole entire stack of papers from work, called my secretary, organized all the paperwork with her, and delegated some ridiculously large amount of my to do list to other people.
That was the paperwork from my current business. I'm also starting another one! For some reason, for the first time in my life I came up with a really great and necessary business idea, got lots of other people involved, and created a lot of very enjoyable work for myself. My wife helped me with that, too, finding me a great main person to make sure the business gets started properly (for no pay at all to start), and arranging several meetings with key people who can help me.
Okay, so that's what's happening with me nowadays.
Physically, the hemorrhoids (sorry for bringing those up, but they've been a central part of my life for a couple months) have limited how much I could work on running and walking. I have no problem walking over a mile, though, even if there are hills, and I can now do real, proper pushups. A proper pushup for me is to go down far enough that my chest would touch a fist if someone made a fist on the ground below my chest. That's how the military taught me to do a pushup. Two weeks ago, or maybe even last week, I was excited to finally get to where I could do one of those.
So I'm progressing, though I'm still pretty scrawny at 145 pounds fully clothed and in my shoes. I have some loose skin near my elbows on my upper arm that let me know my arms haven't grown back to the size they were before the transplant. Still, progress is progress.
Just thought I'd check in. God bless you all!
Thursday, July 5, 2012
Friday, June 15, 2012
Day 140-something: The Adventure
Cyndi of The Voice: A Christian Cancer Blog put a comment on this site asking me a couple questions about my leukemia experience. I wrote her back, and I didn't want to lose the writing, so I'm posting it here.
Thanks for asking the question, Cyndi. It's so much easier to write about something when there's a question to be answered!
First, I agree with Steve from your "How should a Christian die?" post. Isaiah 57:1-2 has always given me comfort. Sometimes God removes a saint, and it's a gift to the saint. I always think of great ministers like Keith Green and missionaries like Jim Elliott, both of whom died young.
When I had to "number my days" (Ps. 90:12), the day I received my diagnosis of leukemia, I didn't panic or pray a prayer of healing. I thought, "Well, now Paul, you finally get to know whether you really believe all the things you've been saying. Do all things work together for good for those who love God and are called for his purposes? Or will you make leukemia an exception."
My prayer of faith was: "I believe this is good. Tell me what to do."
Maybe I'm crazy as well as believing. Within five minutes I was actually pretty excited. I've never had a potentially fatal disease before, especially one that carried a 25% or less survival rate. (That's probably increased to close to 50% over the last five years, but I don't have data that recent.)
As soon as I settled in my mind that I believed and that I was ready to head towards eternity or remain here, I felt God say to me that I wouldn't die. After that, I never wondered.
When they talked about sending me to ICU if my blood pressure kept dropping, when they gave me yellow socks to indicate I was a falling risk who needed help every time he got out of bed, when I lost all ability and energy to hope, move, eat, or feel anything, yet I never wondered. With no strength to rejoice or feel the prayers, I offered prayers of praise to God laying in my hospital bed.
And why not? What a grand adventure! I met people much stronger than I am, enduring much worse suffering than I was. I met caring doctors and nurses with hope, energy, and conviction who gave themselves for my life. I met strangers receiving no pay at all who dropped in just to cheer me on. I watched my wife lay down her entire life to devote herself to caring for me for most of ten months straight.
I met people all over the world, including you, Cyndi, and I was inspired, encouraged, made hopeful, loved, and obtained a rest I never could have had if I had not gone through what I went through.
Better yet, I was able to encourage others. I am quite certain I helped pull a couple people out of a pit of despair and give hope. I watched one of them do the same for someone else. I wrote web pages to try to correct the awful, dire prognoses given on the internet about "Blastic Plasmacytoid Dendritic Cell Neoplasm," and I received several emails thanking me for giving them up-to-date, hopeful information. I received dozens of emails thanking me for the inspiration and encouragement people received through my blog. I talked at least two people into getting a bone marrow transplant rather than waiting for their BPDCN to relapse, as it almost always does, and dying.
Those things are exciting. I got to experience a whole new world, bless people, give honor to God through Jesus Christ, and, on top of that, to go through trials, which produce patience so that I can have hope of being perfect and complete, lacking nothing, when I appear before God! (Jam. 1:2-4) How exciting is that!
"For to you it has been granted on behalf of Christ not only to believe on him, but also to suffer for his sake." (Php. 1:29)
Thanks for asking the question, Cyndi. It's so much easier to write about something when there's a question to be answered!
First, I agree with Steve from your "How should a Christian die?" post. Isaiah 57:1-2 has always given me comfort. Sometimes God removes a saint, and it's a gift to the saint. I always think of great ministers like Keith Green and missionaries like Jim Elliott, both of whom died young.
When I had to "number my days" (Ps. 90:12), the day I received my diagnosis of leukemia, I didn't panic or pray a prayer of healing. I thought, "Well, now Paul, you finally get to know whether you really believe all the things you've been saying. Do all things work together for good for those who love God and are called for his purposes? Or will you make leukemia an exception."
My prayer of faith was: "I believe this is good. Tell me what to do."
Maybe I'm crazy as well as believing. Within five minutes I was actually pretty excited. I've never had a potentially fatal disease before, especially one that carried a 25% or less survival rate. (That's probably increased to close to 50% over the last five years, but I don't have data that recent.)
As soon as I settled in my mind that I believed and that I was ready to head towards eternity or remain here, I felt God say to me that I wouldn't die. After that, I never wondered.
When they talked about sending me to ICU if my blood pressure kept dropping, when they gave me yellow socks to indicate I was a falling risk who needed help every time he got out of bed, when I lost all ability and energy to hope, move, eat, or feel anything, yet I never wondered. With no strength to rejoice or feel the prayers, I offered prayers of praise to God laying in my hospital bed.
And why not? What a grand adventure! I met people much stronger than I am, enduring much worse suffering than I was. I met caring doctors and nurses with hope, energy, and conviction who gave themselves for my life. I met strangers receiving no pay at all who dropped in just to cheer me on. I watched my wife lay down her entire life to devote herself to caring for me for most of ten months straight.
I met people all over the world, including you, Cyndi, and I was inspired, encouraged, made hopeful, loved, and obtained a rest I never could have had if I had not gone through what I went through.
Better yet, I was able to encourage others. I am quite certain I helped pull a couple people out of a pit of despair and give hope. I watched one of them do the same for someone else. I wrote web pages to try to correct the awful, dire prognoses given on the internet about "Blastic Plasmacytoid Dendritic Cell Neoplasm," and I received several emails thanking me for giving them up-to-date, hopeful information. I received dozens of emails thanking me for the inspiration and encouragement people received through my blog. I talked at least two people into getting a bone marrow transplant rather than waiting for their BPDCN to relapse, as it almost always does, and dying.
Those things are exciting. I got to experience a whole new world, bless people, give honor to God through Jesus Christ, and, on top of that, to go through trials, which produce patience so that I can have hope of being perfect and complete, lacking nothing, when I appear before God! (Jam. 1:2-4) How exciting is that!
"For to you it has been granted on behalf of Christ not only to believe on him, but also to suffer for his sake." (Php. 1:29)
Wednesday, June 13, 2012
Day a Lot
That title may not make much sense if you haven't been reading my blog or others like it, but when you've had a stem cell transplant your days are, literally, numbered.
I've been titling a lot of these posts "Day 7" and "Day 36" and stuff like that, but now I think we're up in the 140's. June 17 will be 5 months (2 with 31 days, one with 29 days, so 151 days at that point) since the transplant. I wasn't sure what day today was, so I just called it Day a Lot.
My most interesting side effect at this point is that the chemo lines on my fingernails have moved to the tip, and I have jagged, not very well attached, fingernail tips.
What are chemo lines?
These:
Believe it or not, I couldn't clip off even the patch on that middle finger that seems loose. It was attached, but it was flimsy, much thinner than a fingernail ought to be. And all that other jagged stuff just broke apart like that. Everything is cut to the quick, and the end of that nail hurt all the way across because some of the exposed skin is usually attached to fingernail.
The top finger there is my left index finger. That picture was from a couple weeks ago. It's chemo line has made it to the end now, and ...
Sorry the picture's not better. My right thumb chemo line has grown out; it looks like this:
I hope I haven't bored you with the pictures. It's on my mind because my left index finger and right thumb hurt every time I stick them in a pocket to retrieve keys or a wallet or something. The jagged edges catch on anything mesh and on my socks when I put them on my feet in the morning.
I clip and file my nails every other day to keep the jagged edges down. New little burrs pop up every day. The lines on my thumbs were so big and so ragged that I had to start filing them when they were only halfway up my thumb.
I'm figuring one more week, though, and they'll have all grown out.
From what I understand, when they give me chemotherapy for leukemia, it kills all the fast-growing cells. Our fingernails grow from the bottom up, so when I received chemotherapy in January, the cells at the base of my nails died. Once my nails got back to growing (which took a while, like my hair), there was a line in my fingernail.
What's funny is I've never gotten a chemo line on my pinkies. I had the chemo lines after my first round of chemo, too, and that was only on my thumbs, index, and middle fingers. So maybe the smaller fingers grow their nails slower, and the pinky nail doesn't qualify as fast-growing by chemotherapy standards.
Okay, enough about fingernails.
For those of you going through the same thing, this is day 140-something for me, and usually I can be up all day working (at a computer, not manual labor!). If I do that two or three days in a row, though, I sometimes find that I have no energy on the day after that and I need a long nap ... or two naps.
My physical recovery is a little hindered by hemorrhoids. I had two good days walking and running last week, but I was bleeding the following morning when I went to the bathroom.
I still exercise every day. I have a rubber band--a long, thick blue one--that I use pretty much every day. It's made for yoga students, and I believe they can be bought at WalMart, Target, and stores like that. They're real inexpensive, less than $10 for a set of three of varying tension. I can do exercises with the band even when the hemorrhoids are acting up.
As you can see, I'm still skinny, but I no longer look like I live in a refugee camp.
I've found that doing exercises with the yoga band is really good at bringing out the veins on my forearms, which helps reduce the possibility of being stuck two or three times when the lab draws blood, which is obviously a regular occurrence in my life. I recommend twisting that band around daily for those who have to have blood drawn regularly.
In order to exercise my legs, I do more intense activities like deep knee bends and calf raises. I can do just a couple sets of those, and it works my legs well without a lot of walking, which is real bad on the hemorrhoids.
I found a great exercise, too, for the back of my legs (hamstrings) and buttocks. Usually, walking or running would be the best thing for that, but I'm limited how much I can do that until my body's more back to normal and I don't have hemorrhoids so often. So now, I lie on the floor on my back with my knees bent. I then lift my hips off the ground so that only my feet and shoulders are touching, and I either hold it or do a number of repetitions. One or two reps seems real easy, but it doesn't take long for me to be able to feel the work involved.
For those of you in a more normal condition, you can do that same exercise laying on your back with your calves on an exercise ball. You lift your hips pulling your feet down onto the ball so your shoulders are on the ground and your feet planted on the ball. It works your balancing muscles, your hamstrings, your buttocks, and your lower back. Get good at it, and you'll have done one of the best things you can do to guard your lower back against strains and pain.
I have got to publish that booklet or make videos on the things I've learned about preventative back care! Good information is out there, but it's so hard to find it accumulated in one place without having unnecessary medications or equipment being hard sold to you.
I am an affiliate for julstro.com, which is a fabulous muscle therapy site, and I recommend her books, but she doesn't cover the exercises. She does have a couple extremely effective stretches, and she explains exactly why they're so effective. (You may be able to find that on her site for free, but I know any of the books in her "Pain Free" series would have the stretches in them, too.)
Stay tuned because sometime this summer, I am going to get the exercises out.
By the way, I'm a fastidious researcher. The exercises are based on 2 to 3 years of reading articles by professional coaches and physical therapists in the journal Peak Performance, on 2 years of research while my wife had a terrible case of sciatica (that had to be resolved with a back operation because it was a badly herniated disk), and 10 years now of trying the exercises and stretches out on myself and anyone who would listen to my advice (which is a lot of people; I'm told I inspire trust when I talk to people). When people who write advice on back pain say things about their techniques or latest and greatest pill, I look it up on the Pubmed database to see if there's any real research on it.
So I'm advertising something here that's going to be free (except the booklet, if I do it that way, which will cost some minimal amount). I just need a little time, which seems to be in short supply.
Until then, that exercise I mentioned above is a good start. Research says that it is not a strong back that is least prone to being injured, nor even a flexible back, but a back with good muscle endurance.
Maybe on the next blog I do, I'll explain the iliopsoas muscle so you can have a taste of useful—no, critically important—things to know about your back. Ever wonder why you've been told not to do situps with your legs straight like we older guys did when we were kids? I'll explain that, and I'll also explain when to stop your leg lifts, if you do them, because the reasoning is all the same.
I've been titling a lot of these posts "Day 7" and "Day 36" and stuff like that, but now I think we're up in the 140's. June 17 will be 5 months (2 with 31 days, one with 29 days, so 151 days at that point) since the transplant. I wasn't sure what day today was, so I just called it Day a Lot.
My most interesting side effect at this point is that the chemo lines on my fingernails have moved to the tip, and I have jagged, not very well attached, fingernail tips.
What are chemo lines?
These:
And when those chemo lines get to the ends of your fingers they do this:
Believe it or not, I couldn't clip off even the patch on that middle finger that seems loose. It was attached, but it was flimsy, much thinner than a fingernail ought to be. And all that other jagged stuff just broke apart like that. Everything is cut to the quick, and the end of that nail hurt all the way across because some of the exposed skin is usually attached to fingernail.
The top finger there is my left index finger. That picture was from a couple weeks ago. It's chemo line has made it to the end now, and ...
Sorry the picture's not better. My right thumb chemo line has grown out; it looks like this:
I hope I haven't bored you with the pictures. It's on my mind because my left index finger and right thumb hurt every time I stick them in a pocket to retrieve keys or a wallet or something. The jagged edges catch on anything mesh and on my socks when I put them on my feet in the morning.
I clip and file my nails every other day to keep the jagged edges down. New little burrs pop up every day. The lines on my thumbs were so big and so ragged that I had to start filing them when they were only halfway up my thumb.
I'm figuring one more week, though, and they'll have all grown out.
From what I understand, when they give me chemotherapy for leukemia, it kills all the fast-growing cells. Our fingernails grow from the bottom up, so when I received chemotherapy in January, the cells at the base of my nails died. Once my nails got back to growing (which took a while, like my hair), there was a line in my fingernail.
What's funny is I've never gotten a chemo line on my pinkies. I had the chemo lines after my first round of chemo, too, and that was only on my thumbs, index, and middle fingers. So maybe the smaller fingers grow their nails slower, and the pinky nail doesn't qualify as fast-growing by chemotherapy standards.
Okay, enough about fingernails.
For those of you going through the same thing, this is day 140-something for me, and usually I can be up all day working (at a computer, not manual labor!). If I do that two or three days in a row, though, I sometimes find that I have no energy on the day after that and I need a long nap ... or two naps.
My physical recovery is a little hindered by hemorrhoids. I had two good days walking and running last week, but I was bleeding the following morning when I went to the bathroom.
I still exercise every day. I have a rubber band--a long, thick blue one--that I use pretty much every day. It's made for yoga students, and I believe they can be bought at WalMart, Target, and stores like that. They're real inexpensive, less than $10 for a set of three of varying tension. I can do exercises with the band even when the hemorrhoids are acting up.
As you can see, I'm still skinny, but I no longer look like I live in a refugee camp.
I've found that doing exercises with the yoga band is really good at bringing out the veins on my forearms, which helps reduce the possibility of being stuck two or three times when the lab draws blood, which is obviously a regular occurrence in my life. I recommend twisting that band around daily for those who have to have blood drawn regularly.
In order to exercise my legs, I do more intense activities like deep knee bends and calf raises. I can do just a couple sets of those, and it works my legs well without a lot of walking, which is real bad on the hemorrhoids.
I found a great exercise, too, for the back of my legs (hamstrings) and buttocks. Usually, walking or running would be the best thing for that, but I'm limited how much I can do that until my body's more back to normal and I don't have hemorrhoids so often. So now, I lie on the floor on my back with my knees bent. I then lift my hips off the ground so that only my feet and shoulders are touching, and I either hold it or do a number of repetitions. One or two reps seems real easy, but it doesn't take long for me to be able to feel the work involved.
For those of you in a more normal condition, you can do that same exercise laying on your back with your calves on an exercise ball. You lift your hips pulling your feet down onto the ball so your shoulders are on the ground and your feet planted on the ball. It works your balancing muscles, your hamstrings, your buttocks, and your lower back. Get good at it, and you'll have done one of the best things you can do to guard your lower back against strains and pain.
I have got to publish that booklet or make videos on the things I've learned about preventative back care! Good information is out there, but it's so hard to find it accumulated in one place without having unnecessary medications or equipment being hard sold to you.
I am an affiliate for julstro.com, which is a fabulous muscle therapy site, and I recommend her books, but she doesn't cover the exercises. She does have a couple extremely effective stretches, and she explains exactly why they're so effective. (You may be able to find that on her site for free, but I know any of the books in her "Pain Free" series would have the stretches in them, too.)
Stay tuned because sometime this summer, I am going to get the exercises out.
By the way, I'm a fastidious researcher. The exercises are based on 2 to 3 years of reading articles by professional coaches and physical therapists in the journal Peak Performance, on 2 years of research while my wife had a terrible case of sciatica (that had to be resolved with a back operation because it was a badly herniated disk), and 10 years now of trying the exercises and stretches out on myself and anyone who would listen to my advice (which is a lot of people; I'm told I inspire trust when I talk to people). When people who write advice on back pain say things about their techniques or latest and greatest pill, I look it up on the Pubmed database to see if there's any real research on it.
So I'm advertising something here that's going to be free (except the booklet, if I do it that way, which will cost some minimal amount). I just need a little time, which seems to be in short supply.
Until then, that exercise I mentioned above is a good start. Research says that it is not a strong back that is least prone to being injured, nor even a flexible back, but a back with good muscle endurance.
Maybe on the next blog I do, I'll explain the iliopsoas muscle so you can have a taste of useful—no, critically important—things to know about your back. Ever wonder why you've been told not to do situps with your legs straight like we older guys did when we were kids? I'll explain that, and I'll also explain when to stop your leg lifts, if you do them, because the reasoning is all the same.
Wednesday, May 30, 2012
Video to Share
I wrote a blog about an hour ago. Don't forget to scroll down and read that if you want to hear updated news now that I'm back home.
I just found this (my thanks to news.Discovery.com for sharing it). I'm not in touch with pop music, so I'd never heard the Kelly Clarkson song that they used to make this music video. Let me give you Discovery's introduction to it:
I just found this (my thanks to news.Discovery.com for sharing it). I'm not in touch with pop music, so I'd never heard the Kelly Clarkson song that they used to make this music video. Let me give you Discovery's introduction to it:
What's stronger than a pop star singing about how she can overcome bad interpersonal relationships? Some strong children at the Seattle Children's Hospital singing about how they can overcome their relationship with what ails them.
Testing Out Life at Home
I have some pictures today, but unfortunately none of what would have been the best picture of all: me rolling and sprawling as I tried to run down the first base line in a softball game with friends.
It's not like I didn't know I can't run fast. I can jog a little. I could jog all the way around the bases at a 13 or 14 minute per mile pace (that's very slow). I only intended to jog. After all, this was just fooling around with friends.
But as soon as I hit the ball, my subconscious took over. After hundreds and hundreds of baseball and softball games throughout my life, my body didn't need any input from my conscious mind. It knew just what to do, leaned toward first base, and started pumping my legs.
Or tried to.
I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.
I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all.
Worse, I can only imagine how I looked in my highly unusual softball garb. The blue jeans were no problem, but I bought several UV-protective long sleeve shirts from Duluth Trading Company. I wear them because they're made to be cool even in summer. Excellent shirts, but they're still somewhat new, and they look like dress shirts. Then, when I'm outside, I wear a hat with hanging sides that can wrap around my face and velcro closed. Basically, only my hands are exposed to the sun, and I put SPF 50 sunblock on them.
So I look a bit like a desert nomad dressing up for a casual dinner party when I'm outside wearing the hat. I will get you a picture of that.
My daughter just finished conducting a "Dr. Seuss party" for some of the children in Rose Creek Village. She loves Dr. Seuss books, so she brought children over, made them some drinks, and read Dr. Seuss books to them under the willow tree in the back yard.
In the meantime, my son Manuha was experimenting--literally--with a box of old chemistry supplies that was given to him.
My wife took that picture. Unfortunately, when I tried to take a picture, this is what happened ...
I couldn't get my hands to stop shaking. I'm not sure which medication makes my hands shake, but I was doing pretty good for about 3 weeks. The last week or so, though, I'm back to shaking badly enough have difficulty writing. Good thing I'm usually typing!
The shaky hands don't bother me. Those will go away as I wean off medicine. I understand Tacrolimus, one of the immunosuppressives, can commonly cause tremors, and I won't be off that until at least October, and only if the taper off of Cellcept goes will first. We'll see.
Have a good day, y'all!
It's not like I didn't know I can't run fast. I can jog a little. I could jog all the way around the bases at a 13 or 14 minute per mile pace (that's very slow). I only intended to jog. After all, this was just fooling around with friends.
 |
| We've got stuff leaning against the house because we're still moving in, but the hydrangea bushes and the Tennessee spring are beautiful. |
But as soon as I hit the ball, my subconscious took over. After hundreds and hundreds of baseball and softball games throughout my life, my body didn't need any input from my conscious mind. It knew just what to do, leaned toward first base, and started pumping my legs.
Or tried to.
I only got about three steps down the line before my conscious mind caught up and realized that I had no idea where my feet were in relation to my body. All I knew is that my legs were somewhere behind me, too far back to have any hope of staying upright.
I imagine it probably scared everyone to have the leukemia patient take a dive down the first base line, but we were playing in a grass field. It was soft, I rolled, and it didn't hurt at all.
Worse, I can only imagine how I looked in my highly unusual softball garb. The blue jeans were no problem, but I bought several UV-protective long sleeve shirts from Duluth Trading Company. I wear them because they're made to be cool even in summer. Excellent shirts, but they're still somewhat new, and they look like dress shirts. Then, when I'm outside, I wear a hat with hanging sides that can wrap around my face and velcro closed. Basically, only my hands are exposed to the sun, and I put SPF 50 sunblock on them.
So I look a bit like a desert nomad dressing up for a casual dinner party when I'm outside wearing the hat. I will get you a picture of that.
The Fun Part of Life at Home
There's some fun things happening today.My daughter just finished conducting a "Dr. Seuss party" for some of the children in Rose Creek Village. She loves Dr. Seuss books, so she brought children over, made them some drinks, and read Dr. Seuss books to them under the willow tree in the back yard.
 |
| Janelle, the reader |
 |
| The children and the books under the willow tree |
 |
| Sam wants in on the party! |
In the meantime, my son Manuha was experimenting--literally--with a box of old chemistry supplies that was given to him.
My wife took that picture. Unfortunately, when I tried to take a picture, this is what happened ...
I couldn't get my hands to stop shaking. I'm not sure which medication makes my hands shake, but I was doing pretty good for about 3 weeks. The last week or so, though, I'm back to shaking badly enough have difficulty writing. Good thing I'm usually typing!
The shaky hands don't bother me. Those will go away as I wean off medicine. I understand Tacrolimus, one of the immunosuppressives, can commonly cause tremors, and I won't be off that until at least October, and only if the taper off of Cellcept goes will first. We'll see.
Have a good day, y'all!
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