Friday, April 23, 2010, LSU will host Relay for Life at the Old Front Nine starting at 6pm. The event will end at 6am April 24.
Last week, the LSU Relay for Life survivorship chair, Sara, contacted me about participating in the event. She's been following the blog since reading an article in the Reveille two years ago and invited me to come hang out. After talking to her, I ended up agreeing to give a short speech at the beginning of the event and walk in the Survivors Lap.
My friends and family know that I'm not a public speaker. I barely squeaked through speech class in highschool. My voice gets shaky, I make unintentional funny faces, and generally look like I'm going to cry. Did I mention that I'm the Queen of saying, "Um?" It doesn't' matter whether I practice or not. It always happens. Imagine my relief when a very kind-hearted college counsellor allowed me to substitute another elective in place of speech class.
Why am I baring this little chestnut on the blog? I'd like your support if you're in the area. Actually, I'd like you to support the American Cancer Society through Relay for Life. There will be lots of events throughout the night, giving you the opportunity to have some fun and donate to a very worthy cause.
If you can't be at the event in person, you can always purchase a Luminaria online to honor someone's memory, or celebrate someone's victory over cancer. Simply make a donation of $10 online and fill out the short form so your luminaria displays your intended message and the name of the person that you are honoring. The candles will circle the track and the luminaria will bear the name of someone who has battled cancer.
You don't have to stay for the entire event. You can come and go as you please. There's no cost to attend and you don't have to be a member of a Relay team. If you'd like to raise funds, there's still time. All the information that you'll need is on the website. You can click on the link, or go to: http://www.relayforlife.org/LSU.
The map link for the location doesn't seem to be working, so here are some directions:
From I-10/I-12 split:
Exit Acadian Thruway, then turn left. Cross Perkins Road and continue straight, while in the left lane, and passing Baton Rouge Beach on your right. Turn right on Highland Road. After entering the LSU gates, turn left onto the Nicholson Extension. The Old Front Nine will be on your left before you reach Nicholson Drive.
From I-10/I-110 split:
Exit Acadian Thruway, turning right, and continuing straight in the left lane. Cross Perkins Road and continuing straight, pass Baton Rouge Beach on your right. Turn right on Highland Road. After entering the LSU gates, turn left onto the Nicholson Extension. The Old Front Nine will be on your left before you reach Nicholson Drive.
Monday, April 19, 2010
Thursday, April 15, 2010
An update on Chris' appointment
Chris had an appointment with his bariatric surgeon yesterday. The doctor is pleased with his progress and confirmed that Chris is losing weight at an excellent rate. The doctor elected to inject saline into Chris' port in order to place a greater restriction around his stoma. This will keep Chris from being able to eat too quickly. Chris reported that it was a very big needle and it did hurt when his skin was pierced to access the port. I saw the band-aid and in layman's terms, it was a big ouchie.
Perhaps inspired by all of the Civil War documentaries we've been watching this week, my immune system has elected to attack me on two fronts. The skin GvHD is the worst that it's ever been. There are several rashes occurring on multiple parts of my body. The rashes themselves are the largest they've ever been and occurring on new areas. Don't fret, I'm still one of the lucky ones and my case would still be considered mild compared to others. It's itchy and unsightly, and that's about the worst of it.
My right eye is an attractive shade of pink and both eyes feel itchy and dry. Of course, they aren't physically dry, which is a crafty little trick that GvHD likes to play. They feel mildly strained, making reading a joy. The inside of my right eyelid feels like it's been coated in sand, making each blink an exercise in awareness. Again, I've got it good. I still remember meeting a patient in the apheresis clinic prior to transplant number one getting photopheresis for the GvHD of her eyes. Her eyes were so obscured by mucous, and the skin so pink and swollen, that I couldn't tell you their color. I often wonder how she is.
In summary, to the casual observer, I look like I have eczema, pink eye, and a moderate case of dandruff. Some days, I feel that I should have a shirt made up saying, "It's GvHD, not cooties."
Perhaps inspired by all of the Civil War documentaries we've been watching this week, my immune system has elected to attack me on two fronts. The skin GvHD is the worst that it's ever been. There are several rashes occurring on multiple parts of my body. The rashes themselves are the largest they've ever been and occurring on new areas. Don't fret, I'm still one of the lucky ones and my case would still be considered mild compared to others. It's itchy and unsightly, and that's about the worst of it.
My right eye is an attractive shade of pink and both eyes feel itchy and dry. Of course, they aren't physically dry, which is a crafty little trick that GvHD likes to play. They feel mildly strained, making reading a joy. The inside of my right eyelid feels like it's been coated in sand, making each blink an exercise in awareness. Again, I've got it good. I still remember meeting a patient in the apheresis clinic prior to transplant number one getting photopheresis for the GvHD of her eyes. Her eyes were so obscured by mucous, and the skin so pink and swollen, that I couldn't tell you their color. I often wonder how she is.
In summary, to the casual observer, I look like I have eczema, pink eye, and a moderate case of dandruff. Some days, I feel that I should have a shirt made up saying, "It's GvHD, not cooties."
Wednesday, April 14, 2010
The clarity of parity
This blog post has nothing to do with finance, physics, or birth.
It has been nearly three weeks since starting hormone replacement and I'm definitely seeing and feeling a difference. When I first wake in the morning, I'm better able to get going. That sluggish, mopey miasma that passed for thought first thing in the morning has given way to a definite awareness. I wake up with a clear direction in my mind as to the happenings for the rest of the day. It very nearly resembles a plan. As for execution, that bit is still sorely lacking.
It has dawned on me that the horrible, impenetrable fog surrounding my capability has slowly thinned out to become more of a haze obscuring certain functions. As my body has become acclimated to the reintroduction of higher estrogen levels, my cognitive ability has slowly expanded. Where I was only able to handle one simple task at a time, I am now almost able to handle two slightly more complicated exercises. For the last three years, the only time I was able to read and understand a passage occurred in near complete silence and in isolation. The slightest thing distracted me, leading to multiple readings and much frustration. It got to the point that I stopped reading complex matter. Gossip articles were about the most I could handle.
I've been working on my marketing class while Chris is at work and the house is quiet. Anything requiring a remote or that makes noise as a matter of course is off. This has been the only environment in which I could accomplish even substandard work. Now, I'm finding that I can read over course material while Chris watches television or works on his laptop next to me. I still get distracted and find that I need to go over things more than once, but it's becoming easier. I'm snapping less at interruptions and feeling less fractious. It still takes me about a week to complete one assignment, when you're supposed to be able to do three assignments a week. I'm coping.
My ability to stay on task is improving and the time it takes me to finish a regular chore, e.g. make dinner, is decreasing. Where it might have taken four hours to churn out three dishes, it now takes about two hours. I'm getting better with mise en place and ordering events to be more efficient.
The balance is shifting and beginning to equal. The moments of confusion and utter blankness are occurring with less frequency and giving way to clarity. I'm finally starting to feel capable.
It has been nearly three weeks since starting hormone replacement and I'm definitely seeing and feeling a difference. When I first wake in the morning, I'm better able to get going. That sluggish, mopey miasma that passed for thought first thing in the morning has given way to a definite awareness. I wake up with a clear direction in my mind as to the happenings for the rest of the day. It very nearly resembles a plan. As for execution, that bit is still sorely lacking.
It has dawned on me that the horrible, impenetrable fog surrounding my capability has slowly thinned out to become more of a haze obscuring certain functions. As my body has become acclimated to the reintroduction of higher estrogen levels, my cognitive ability has slowly expanded. Where I was only able to handle one simple task at a time, I am now almost able to handle two slightly more complicated exercises. For the last three years, the only time I was able to read and understand a passage occurred in near complete silence and in isolation. The slightest thing distracted me, leading to multiple readings and much frustration. It got to the point that I stopped reading complex matter. Gossip articles were about the most I could handle.
I've been working on my marketing class while Chris is at work and the house is quiet. Anything requiring a remote or that makes noise as a matter of course is off. This has been the only environment in which I could accomplish even substandard work. Now, I'm finding that I can read over course material while Chris watches television or works on his laptop next to me. I still get distracted and find that I need to go over things more than once, but it's becoming easier. I'm snapping less at interruptions and feeling less fractious. It still takes me about a week to complete one assignment, when you're supposed to be able to do three assignments a week. I'm coping.
My ability to stay on task is improving and the time it takes me to finish a regular chore, e.g. make dinner, is decreasing. Where it might have taken four hours to churn out three dishes, it now takes about two hours. I'm getting better with mise en place and ordering events to be more efficient.
The balance is shifting and beginning to equal. The moments of confusion and utter blankness are occurring with less frequency and giving way to clarity. I'm finally starting to feel capable.
Saturday, April 10, 2010
Negative Twenty
Chris here:
I wanted to give a quick update on the progress of the Lap-Band procedure I had done and I'm really excited about it. Today I stepped on the scale and found that I had was down to 284. That’s 20 Lbs, since surgery.
Woo Hoo!
Monday, April 5, 2010
Anniversaries
There is a stack of cards in my mind, each imprinted with the kind of anniversary that few people celebrate. Nine years ago today, my dad died of cancer. I think the official cause of death listed on his death certificate is "organ failure." He died because the original type of cancer he was diagnosed with had infiltrated his marrow and there was no coming back from it. The official date on record is April 6, 2001. It actually happened the night of the fifth and I'll never forget the timbre of my brother's voice when he called to tell me I needed to come home.
I have been feeling a little more emotional in the week leading up to today. I thought it was a result of the hormone therapy that I started almost two weeks ago. Part of it might still be, but I realized yesterday that my tendency to tear up at the smallest provocation had more to do with missing my dad.
Growing up, Tom was my biggest supporter and number one fan. As far as he was concerned, there wasn't anything that I couldn't do if I wanted to; I only had to try. He had a wicked sharp sense of humor that tended to surprise people because he was so reserved and shy. My brother has grown up to be the very image of dad down to the funny little smirk we both seem to have inherited. John inherited our dad's laid back demeanor and easy charm, whereas I like to think I have the gift of his humor. I know I definitely inherited his reserve.
There are a thousand things I could write about Thomas Betts, but the only thing I will write today is that I miss him terribly.
I have been feeling a little more emotional in the week leading up to today. I thought it was a result of the hormone therapy that I started almost two weeks ago. Part of it might still be, but I realized yesterday that my tendency to tear up at the smallest provocation had more to do with missing my dad.
Growing up, Tom was my biggest supporter and number one fan. As far as he was concerned, there wasn't anything that I couldn't do if I wanted to; I only had to try. He had a wicked sharp sense of humor that tended to surprise people because he was so reserved and shy. My brother has grown up to be the very image of dad down to the funny little smirk we both seem to have inherited. John inherited our dad's laid back demeanor and easy charm, whereas I like to think I have the gift of his humor. I know I definitely inherited his reserve.
There are a thousand things I could write about Thomas Betts, but the only thing I will write today is that I miss him terribly.
Sunday, April 4, 2010
Garden pictures...sort of
Here are some pictures from last weekend's gardening adventure for all of my patient friends.
Come here often?
I never thought I'd run out of impatiens. I think they were multiplying when I wasn't looking.
Finally finished planting and mulching. Time for a drink.
Now for a few close-ups:
White azalea in the backyard. This is a remnant of a past homeowner. The bush was being strangled by ivy when we moved in last year. I thought it was dead until it started blooming this week. It's still a very spindly, sickly looking bush, but it's trying and I've resolved to do some research to see if I can nurse it back to health.
I think this is a butterfly bush. Regardless, it's gorgeous in bloom.
Red azalea. There are four bushes dotting the foundation garden in front of the house. They don't look very healthy, so Chris and I have some work to do.
Chris wanted an urn for the front garden so we popped in to our favorite import store and hit the jackpot. The ice princess was a spur of the moment purchase while we were picking up some extra supplies at the home improvement store.
Baby hosta putting up new growth. I have a small hosta obsession. It's the only plant that I have any luck with.
One of the many coleus plants Chris put in.
The impatiens are thriving. I can't wait for them to start spreading out.
My sweet husband trying to control the weed population.
Come here often?
I never thought I'd run out of impatiens. I think they were multiplying when I wasn't looking.
Finally finished planting and mulching. Time for a drink.
Now for a few close-ups:
White azalea in the backyard. This is a remnant of a past homeowner. The bush was being strangled by ivy when we moved in last year. I thought it was dead until it started blooming this week. It's still a very spindly, sickly looking bush, but it's trying and I've resolved to do some research to see if I can nurse it back to health.
I think this is a butterfly bush. Regardless, it's gorgeous in bloom.
Red azalea. There are four bushes dotting the foundation garden in front of the house. They don't look very healthy, so Chris and I have some work to do.
Chris wanted an urn for the front garden so we popped in to our favorite import store and hit the jackpot. The ice princess was a spur of the moment purchase while we were picking up some extra supplies at the home improvement store.
Baby hosta putting up new growth. I have a small hosta obsession. It's the only plant that I have any luck with.
One of the many coleus plants Chris put in.
The impatiens are thriving. I can't wait for them to start spreading out.
My sweet husband trying to control the weed population.
Tuesday, March 30, 2010
New again
I finally have a full range of motion with both of my arms, so I thought it would be a good time to post. It seems that Chris has been brought low by a random stomach virus, so he's currently napping. He awoke around 3am feeling nauseated. I think he would have vomited, save for one thing--the lap band. It's purpose is to constrict his stomach so he can't over-eat. The thing that didn't occur to either of us when he was having it placed was that it would constrict things from coming up, too. He ended up dry-heaving for half an hour, then going back to sleep.
He managed to go into work, only to call me two hours later to pick him up. Poor guy was very pale when I arrived. I'm hoping it's only a virus that will run its course in a few days.
I've gotten into a few things since last I posted that I thought might be of interest. I began stepping down my tacro dose on Wednesday, which meant no pill on Thursday. Friday, a small patch of skin in the crease of my right elbow began to itch. This is nothing new, since it's a regular spot for GvHD flares. This go round, however, the new immune system decided to flex its muscles and try a little something new. There was a patch of skin roughly 2 inches in diameter packed with angry red blisters. I literally looked like I'd been moisturizing with poison ivy. I rubbed in a dollop of cortisone cream and kept an eye on it thinking that I'd be back on a regular dosage of tacro before the day was over. Much to my surprise, the rash disappeared after a few hours, leaving behind a faint red shadow.
Saturday, Chris and I took advantage of the beautiful weather to finish up a few projects in the front yard. Since I'm now allowed to do a little light gardening, Chris asked me if I'd like to help him finish mulching the front garden. I will be absolutely honest, I don't love to garden. That's my mom's thing. I don't like playing in the dirt and the smell of fertilizer reminds me of the time I threw up at the farmer's market as a kid. I do love a pretty garden and I appreciate all of the effort that goes into planting and maintaining one. If I can trade on chores to get out of gardening, I most certainly will.
When I asked Dr. K. if I could do some light gardening, I was really thinking of potting a few house plants. There's an empty spot on my mantle that I'd like to fill with a pretty orchid. That kind of gardening.
We ended up at our local home improvement center wandering the outdoor gardening department. By the time we got home, we had a truck full of mulch, soil, and plants. The plan was that Chris would finish mulching the front garden while I worked on a small strip of grass running along the side of the house and driveway. All of the utilities and clean-outs are on this side of the house and it drives Chris crazy when the weeds invade. All I had to do was layout weed blocking cloth and install a few plants.
Seven hours and 55 feet later, with the help of a very determined and loving Chris, the weeds gave way to a narrow little garden filled with coleus, impatiens and hostas. I have had my fill of playing in the dirt and having a variety of insects creep up on me and can even attest to the amazing efficacy of La Roche-Posay sunblock. It's the brand the dermatology fellow at MDA recommended I use and after seven hours outside, I didn't have any color. Granted, I was wearing a baseball cap and long sleeves, but my face is still as pale as it has been for the last three years. No sunburn and no tan.
Sunday, I had my first glass of wine. We have been toting this bottle of 2003 Tommasi Ripasso around for the last 2 years, hoping to celebrate. There were 2 bottles before it of the same vintage that a houseguest of our former host helped themselves to while we were in Houston which led to many jokes involving hiding this bottle. Our local supplier doesn't carry the brand anymore, so I'm glad this one survived.
I enjoyed that first glass with a medium rare steak, another first in 3 years. It was absolute bliss to be able to have underdone steak. It sounds trivial, but give something up that you love and see how long you go without it. During the transplant process and depending on the protocol your center follows, you will give up fresh fruits, vegetables, underdone or raw foods, herbal teas, alcohol, caffeine, dairy, and a host of other little things. You get to have them back in increments and over time. I still can't have sushi and avoid herbal teas and supplements. I still don't eat salads at restaurants and shy away from meals not prepared by myself or a very small handful of people. Sadly, you can't be sure of hygiene and what I deem clean, you might find excessive. "Dirt won't hurt," etc. Yes, I do occasionally have meals at restaurants. Yes, I know they aren't the cleanest places in the world. I waited tables during college and have seen the shenanigans that can take place. That's for another day.
I'm feeling a few of the after effects of spending so much time outside Saturday. There are a few small rashes on my face and chest. My eyelids itch constantly and my scalp is flaking off. It's all worth it to be able to do the things I did this weekend, though.
He managed to go into work, only to call me two hours later to pick him up. Poor guy was very pale when I arrived. I'm hoping it's only a virus that will run its course in a few days.
I've gotten into a few things since last I posted that I thought might be of interest. I began stepping down my tacro dose on Wednesday, which meant no pill on Thursday. Friday, a small patch of skin in the crease of my right elbow began to itch. This is nothing new, since it's a regular spot for GvHD flares. This go round, however, the new immune system decided to flex its muscles and try a little something new. There was a patch of skin roughly 2 inches in diameter packed with angry red blisters. I literally looked like I'd been moisturizing with poison ivy. I rubbed in a dollop of cortisone cream and kept an eye on it thinking that I'd be back on a regular dosage of tacro before the day was over. Much to my surprise, the rash disappeared after a few hours, leaving behind a faint red shadow.
Saturday, Chris and I took advantage of the beautiful weather to finish up a few projects in the front yard. Since I'm now allowed to do a little light gardening, Chris asked me if I'd like to help him finish mulching the front garden. I will be absolutely honest, I don't love to garden. That's my mom's thing. I don't like playing in the dirt and the smell of fertilizer reminds me of the time I threw up at the farmer's market as a kid. I do love a pretty garden and I appreciate all of the effort that goes into planting and maintaining one. If I can trade on chores to get out of gardening, I most certainly will.
When I asked Dr. K. if I could do some light gardening, I was really thinking of potting a few house plants. There's an empty spot on my mantle that I'd like to fill with a pretty orchid. That kind of gardening.
We ended up at our local home improvement center wandering the outdoor gardening department. By the time we got home, we had a truck full of mulch, soil, and plants. The plan was that Chris would finish mulching the front garden while I worked on a small strip of grass running along the side of the house and driveway. All of the utilities and clean-outs are on this side of the house and it drives Chris crazy when the weeds invade. All I had to do was layout weed blocking cloth and install a few plants.
Seven hours and 55 feet later, with the help of a very determined and loving Chris, the weeds gave way to a narrow little garden filled with coleus, impatiens and hostas. I have had my fill of playing in the dirt and having a variety of insects creep up on me and can even attest to the amazing efficacy of La Roche-Posay sunblock. It's the brand the dermatology fellow at MDA recommended I use and after seven hours outside, I didn't have any color. Granted, I was wearing a baseball cap and long sleeves, but my face is still as pale as it has been for the last three years. No sunburn and no tan.
Sunday, I had my first glass of wine. We have been toting this bottle of 2003 Tommasi Ripasso around for the last 2 years, hoping to celebrate. There were 2 bottles before it of the same vintage that a houseguest of our former host helped themselves to while we were in Houston which led to many jokes involving hiding this bottle. Our local supplier doesn't carry the brand anymore, so I'm glad this one survived.
I enjoyed that first glass with a medium rare steak, another first in 3 years. It was absolute bliss to be able to have underdone steak. It sounds trivial, but give something up that you love and see how long you go without it. During the transplant process and depending on the protocol your center follows, you will give up fresh fruits, vegetables, underdone or raw foods, herbal teas, alcohol, caffeine, dairy, and a host of other little things. You get to have them back in increments and over time. I still can't have sushi and avoid herbal teas and supplements. I still don't eat salads at restaurants and shy away from meals not prepared by myself or a very small handful of people. Sadly, you can't be sure of hygiene and what I deem clean, you might find excessive. "Dirt won't hurt," etc. Yes, I do occasionally have meals at restaurants. Yes, I know they aren't the cleanest places in the world. I waited tables during college and have seen the shenanigans that can take place. That's for another day.
I'm feeling a few of the after effects of spending so much time outside Saturday. There are a few small rashes on my face and chest. My eyelids itch constantly and my scalp is flaking off. It's all worth it to be able to do the things I did this weekend, though.
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