Friday, April 30, 2010

Still here, I promise

It's been a full week since I stopped taking tacrolimus and Dana's immune system has been in charge. Since being weaned from the drug, I've noticed that my ability to concentrate has improved and that my skin has become public enemy number one. My allergies are also a bit more acute, but I think that has more to do with this crazy weather.

I have a bit of culpability where the skin issue is concerned. I have been gardening. It started two weeks ago when Chris and I decided to plant a container garden. Simple. All we had to do was go to the local home improvement store and find a container that we both liked and pick up a few plants.

We couldn't find one that we both liked. Chris found one that had a nice shape, but the color was awful and so we compromised. The container and a can of spray paint came home with us, along with an assortment of plants.

What should have been a quick half hour in the great outdoors became a series of projects that spanned two weekends. It was mostly my fault. I insisted on too many plants which meant one very colorful and cheery planter was planted as well as an unintended new garden bed. This one is located at the base of one of the crape myrtles at the front of the house.

Of course, we still had a few plants left over, so we decided to plant another container. Another trip for supplies meant new projects adopted on the fly. Chris wanted to plant ground-cover under the pear trees. More plants.

As we planted, we began talking about the overgrown sago palm guarding the front door. What if we trimmed it back? Another project. It started with an exploratory snip. I cut a frond from the top-most crown. Then I cut another. And another. It was like cutting your Barbie's hair for the first time. Soon, Chris grabbed a pair of shears and joined me. What we thought was three sago palms growing in a clump turned out to be thirteen.

There was a litter of sago pups hidden by the obnoxious growth. Once enough foliage was cut back, we could approximate how long the little bugger had been left to its own devices. The house is twelve years old and there's evidence that some long ago resident nurtured the landscape. At some point, one or a handful of the house's owners stopped trying or didn't realize that trees and bushes need a little attention. We even discovered an azalea bush, withered and gnarled, struggling to grow out from under the palm.

Cutting the sago back helped us realize that it might not be worth saving. It's branched out and has three crowns growing from various points on the main stalk. We could try cutting the extra heads off, but this would likely kill the plant. We've discussed taking out the main tree and replanting one of the pups in its place. The more we talk about it, the less inclined we are to keep the tree. Cutting back the spiky fronds has really opened up the front of the house and made it seem a little more welcome.

While tackling this project, Chris decided he wanted to take out the holly bush behind the sago. What holly bush, you may ask? The specimen that had grown into the bush next to it. The one being overwhelmed by the bully of a bush that seems to have taken over the rest of the bed. It had managed to put up a few distinctly shaped leaves giving testimony to its existence. Chris managed to pull it out in less than five minutes.

This project led to the discovery of a clump of agapanthus struggling for sunlight. We didn't touch them. I have a strange history with agapanthus. I can get them to grow and multiply, but they will not bloom for me. I plan on dividing the clumps and filling in the bed more evenly.

The front bed is looking a little disheveled thanks to our attentions. Chris spread mulch to hide most of the damage. We're discussing what the next step will be. It's fairly likely that the remaining bushes will be trimmed back severely, but that will have to wait until the fall when they become dormant. I hope they enjoy their reprieve.

What does all of this plant talk have to do with my health? I was exposed to more sun over the last two weekends than I have been collectively in three years. I wore sunblock, a hat, and long sleeves. I stayed in the shade as much as possible. I took precautions.

My arms are tan, but not in a conventional way. My transplant family would recognize what I'm talking about. The skin is unevenly pigmented and freckled with spots absent pigment. It is more reminiscent of a chemo tan--that flat brown that busulfan brings about.

I itch. There are plaques of rashes on my face, chest, back, and arms. They are all small and manageable. They are behaving in the normal manner.

I've elected to take a hiatus from the outdoors. I'll stay inside as much as possible and see if the GvHD dies down. There are plenty of projects to tackle inside to keep me busy. I plan on caulking the windows and around the doors this weekend. This will probably lead me to more projects, as home improvement always does.

I am well and I am happy. Dana's immune system is fully in charge and I am grateful.

It's overcast, otherwise, I'd take pictures of our handiwork. Until I'm able, here's a list of the plants that have made the cut:

bulbine
liriope
petunias
marigolds
verbena
oregano
lavender
a silvery-white ground cover whose name presently escapes me
alyssum

If you're in the area and interested in one of the sago pups, leave a comment, or email me. Chris and I are garden novices, so there are no guarantees that the little guys will survive our attentions, but if they do, you are welcome to them. Even better, if you know what you're doing, you're welcome to dig out as many sago pups as you like. Contact me and we'll make arrangements.

Friday, April 23, 2010

Relay for Life event postponed

The Relay for Life event scheduled to take place tonight at LSU has been postponed. It has been rescheduled for Sunday, April 25 at noon. Sadly, I'm committed to be elsewhere, so I won't be giving the speech.



For those who are interested, here's what I would have said:



At no point in the last three years could I ever have imagined giving a speech at a Relay for Life event.



Because this year's theme is "Celebrating Birthdays," I'll tell you how I came to have three birthdays.



I was diagnosed with acute lymphoblastic Leukemia on January 9, 2007. I was 32 years old and up until that day, cancer wasn't something I worried about happening to me. It was something that I would worry about when I was older. After all, I was young, active, and healthy.



I was treated at MD Anderson Cancer Center where they discovered that my particular flavor of leukemia had a rare translocation. That meant chemo alone wouldn't cure me. I had a cord blood transplant in May 2007. In transplant circles, the day you get your transplant becomes the date you celebrate your second birthday. So now I have my "belly button birthday," which is in October and my "transplant birthday" in May.



I attended my first Relay for Life event in 2008 when a friend raised funds in my honor. It was the first time since having the transplant eleven months earlier that I almost felt normal and I had a fabulous time.



I relapsed two months later.



Back at MDA, I had more chemo and was fortunate enough to have a second transplant. This time, a complete stranger was donating bone marrow to save my life. September 7, 2008 became my third birthday.



Almost two years later, I'm able to stand before you because of life saving treatments that came about thanks to research funded by organizations like the American Cancer Society. Men and women like you all leave me in awe. You give a voice to people like me thanks to your dedication and resolve. The money you all raise goes toward programs that provide life lines for people dealing with cancer.



Through your efforts, you give the gift of hope. So, on behalf of cancer survivors, I'd like to thank you.



Thank you for giving me the chance to celebrate another birthday.

Thursday, April 22, 2010

April check-up

I saw my local oncologist yesterday and it looks like I'm managing to stay out of trouble.

For those of you who are interested:

WBC: 7.3 k/ul

RBC: 3.47 M/UL

HGB: 11.2 g/dl

PLT: 337 k/ul

ANC: 5.2 k/ul

AEC: 0.7 k/ul

ALC: 1.4 k/ul

Alk phos: 114 iu/L

AST/SGOT: 26 iu/L

ALT/SGPT: 36 iu/L

For the most part, my counts are within normal ranges. For those in the know, you can see that my red blood cell count is still low. The normal range is 4.2-5.4M/UL according to this particular machine. I've found that all of the "normal" numbers fluctuate just a little depending on what scale you use as a reference. It's not unusual for transplant patients to have low red blood cell counts years after their transplant.

The numbers that I'm really excited about are the last three. These are a snapshot of my liver function. The numbers have been wacky for the last two years and I expected them to be a little higher since I've been taking a lower dose of tacrolimus. Imagine my elation when I saw that they were almost all normal. The hold out is my Alk Phos at 114 iu/L. Normal is 32-92 iu/L. As my local doctor would say, "Close enough."

My absolute eosinophil count, AEC, is holding steady at 0.7 k/ul. These are the little critters that pop up in your blood when you're dealing with allergies or parasites or GvHD. Many visits ago, my transplant doctor confided to me that this is exactly where she likes to see the AEC. It's evidence that you're experiencing just a little graft versus host disease, which is so much better than leukemia. As my arms and face are covered in tiny, itchy, red patches, I can attest to the presence of a little graft versus host. I'll take it in this small quantity any day over the alternative.

I'm still slotted to give a small speech at the Relay for Life event tomorrow, and you all are still invited to come support a really worthy cause. Said speech has still not taken shape, yet. I'm struggling with the words. A twitter friend suggested, "Survivor, enough said." I loved this and would love to give a three word speech, alas, I don't think I'm famous enough for that.

If you can't make it to the event, but would like to donate, there's still time. You could dedicate a luminaria for a $10 donation, or make a donation to the Relay for Life website: http://www.relayforlife.org/LSU.

This weekend is going to be socially the most busy I've been in three years. A friend is flying in from Boston for Jazz Fest and Chris and I plan to meet up with her for a little bit. I haven't seen her in over ten years and it goes without saying that I'm excited. I'll put up a short post with pictures next week detailing this weekend's adventures.

Monday, April 19, 2010

Relay for Life, LSU

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.

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."

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.

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.

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.