Tuesday, March 16, 2010

View from my front door


Before we moved into the house last year, I had determined that these three trees planted in the center of the front yard would be removed. I had several reasons, the first of which being that they're placed relatively close to the house. I was thinking of their root system and how those insidious little roots would be creeping ever closer to my house's foundation. Concrete is not an impediment to the natural order of things. We've all seen plants coming up through cement.

The trees were covered in dull, brittle, dark green leaves that carpeted the lawn and blew out into the street. They blocked the view of the magnolia tree planted on the cul-de-sac. If you asked, I could give you a hundred reasons that the trees needed to go.

Now that I've lived with them for almost a year, I think I know the reason that some long ago homeowner planted them thus. They're visible from four rooms in the house which is covered in windows. There is a certain element of privacy and solitude when the leaves hang thick and lush on gently swaying branches. I can leave the blinds open on the picture window in the kitchen and unless you come into the yard, you wouldn't be able to see me. The cats love watching the multitude of birds darting from the tree to the ground and back. Etsuko and Akiko can often be found sitting on opposite ends of the window ledge chattering quietly in their staccato little meows, beckoning the birds closer.

A few days ago, tiny buds began appearing on the once winter bare trees. Three days ago, tiny white blossoms burst out amongst the three trees. They're lovely to look at and are a nice harbinger of the spring to come. The weather has been mild and sunny these last few days, in very stark contrast to the horrible weather my friends in the northeast have been experiencing.

I would desperately love to be outside, sitting in the shade of those lovely trees, enjoying the light breeze and moderate temperatures. Unfortunately, I'm confounded by a problem that I don't expand on very often. I have a mild case of skin GvHD which is triggered by sunlight. It doesn't have to be direct sunlight and I can wear sunscreen and long-sleeved shirts and hats with brims while sitting in a covered area and still suffer the consequences.

When I volunteered in New Orleans at the bone marrow drive a few weeks ago, I stood in the shadow of a tent. A few days after the event, my face erupted in tiny blisters. My chest was covered in a prickly rash and nearly every inch of me itched. As one cluster of blisters began the inevitable process of scaling over, another cluster would pop up somewhere new. The skin of my nose was constantly inflamed and irritated. At one point, it looked like I was peeling from a sunburn.

I know my friend, Nancy, can relate since she's been dealing with it for far longer than I have. I apply lotions and creams and unguents and they seemed to work for a few weeks. Then the skin around my eyes began peeling. More specifically, my upper and lower lids.

I finally gave in and ordered the pharmaceutical moisturizers the dermatology fellow at MDA recommended to me after the first transplant. They're helping. I still break out into rashes, but they don't flake as badly once they dry out. The lip treatment is the first to make my lips feel supple once again.

I've learned that about five minutes in the sun is what I can tolerate without incurring too much of a reaction the next day. That's about the time it takes me to walk across a parking lot or load groceries into the car. I'd like to start LSU in the fall and for those of you who have never seen the campus, it's very open and very large. Student parking is around the perimeter and it's quite a little hike to get where you're going. I'm considering lobbying for a parking pass that would allow me to park in disabled spots.

The very thought of this makes me feel like a fraud. I can walk under my own power without assistance and those spots really belong to people who need to be closer to the building. I'm going to try to think of an alternative. Most of my classes should be in a tight cluster of buildings closer to student parking, so I may be able to manage. It will all get sorted once the time arrives.

Last week, I started that independent study course I've been talking about. The first assignment has been graded and I think I'm going to be fine. It took me four days to answer five short essay questions because I'm still having trouble with reading comprehension and retention. The true test of my ability will come when I take the first of three tests attached to the course. I have a few more assignments to get through before this happens, so we'll see.

Speaking of which, I need to get started on lesson number two if I have any hope of completing the entire course by May. Honestly, though, I'd much rather sit in my kitchen and admire the view.

Wednesday, March 10, 2010

Midweek madness

Chris and I have often written about milestones and anniversaries throughout treatment and recovery. Dates usually weigh very heavily upon my mind, so much so that they occasionally find a way to penetrate my dreams and upset my balance. For instance, today would have been my dad's 75 birthday had he survived cancer. He did not and I got that heinous call April 6, 2001. That's another date that will be creeping up on my psyche.

September 7, 2009 was the one year anniversary of my second transplant. I carried a lot of anxiety in the days leading up to that special milestone. October 7 marked my thirteen month anniversary post transplant. There were strange dreams leading up to that day as the little box full of nightmares I keep tucked away in my mind popped open to let a few fears drift out. I was cancer free thirteen months after the first transplant.

The next big milestone I was working toward was the magic eighteen month marker. If you can make it cancer free to this arbitrary day, your chances of survival eek up ever so incrementally. I set goals ahead of this day, promising myself that I would take charge of my physical health in one of the only ways I could truly control. I hit the treadmill and started strength training. It's getting easier to put the milk back on the top shelf.

I don't know if anything has truly changed, but the days leading up to lucky eighteen were quiet. My mind was still and the monster in the box didn't so much as exhale. Perhaps it was the fact that we had house guests that kept me preoccupied. Maybe it had something to do with the focus I've placed on planning and executing the special menus required of Chris's diet. I can vouch for the fact that I was more worried about a textbook I'd ordered arriving in a timely manner than I was about relapsing.

March 7 was here and gone before I realized its significance. I sailed past the big eighteen month marker without even realizing it. I wouldn't have celebrated it, but I am rather surprised that I wasn't experiencing any undue panic as I have in days past.

Saturday, I saw my friend, Lydia, who owns the Garrett Neal Studio in Baton Rouge to have my hair cut and colored. Chris came along to get a trim and visit with Lydia and her son Garrett, who's also a stylist. Sunday, I started doing our taxes.

This past weekend was so absolutely normal, it was outstanding. Perhaps the secret to keeping my fears in check is a busy life filled with the activities that used to be routine to me pre-cancer. I didn't realize that I'd forgotten to be afraid until Tuesday, which made me smile.

Lydia gave me a funky, edgy styling.


The fabulous and incomparable Lydia. I'm going to shamelessly plug her salon here: if you're in Baton Rouge, or nearby, you should do yourself a favor and book an appointment. Lydia and the gang at Garrett Neal Studio will keep you entertained while pampering you. You'll leave smiling and looking fabulous.

Friday, March 5, 2010

2 Week Update

Ann says I have to blog today since she is out of ideas, so here goes.

Its been two weeks since I went 'under the knife' so to speak, and things are shaping up pretty well. The first couple of days were pretty rough...recovering from the anesthesia was particularly dicey. However, after lots of bed rest I eventually regained the ability to stand without hurling like a teenager after drinking Vodka for the first time.

It was a bit strange being on the receiving end of care and attention though. After three years it took a little bit of getting used too, and Ann admitted it was pretty strange for her too. I'm sure she will reflect on it here soon. Lucky for me, the love of my life took such great care of me and I'm pretty much back to 100%.

Two days ago I started eating solid food again and I have to say the lap-band works. There is a marked difference between the amount of food I could eat and feel 'full' before the surgery and after. If you step a little out of line and go for that extra bite, it really gets your attention quick. The experience is very Pavlovian...in a good way.

So after two weeks how much progress have I made? Starting weight 304 Lbs (9.44 Slg * 32.2 Ft/s^2), current weight 294 Lbs. Difference of 3.2%. Not too bad so far.

Friday, February 26, 2010

Events

Last Friday I got a call from Anh Nguyen with Asians for Miracle Marrow Matches (A3M). In the months leading up to my first transplant, Anh and her husband, Ted, were instrumental in helping get the word out about my need for a matched unrelated donor. They and A3M work tirelessly on behalf of the many patients suffering from blood cancers and blood disorders in need of a transplant donor. Ted travels the country setting up marrow donor drives, in an effort to recruit more minorities to the national registry.

Anh and Ted were in New Orleans setting up a drive in honor of Timothy Nguyen, a high school student who is in desperate need of a bone marrow donor. He suffers from Beta Thalassemia and depends on monthly blood transfusions to survive. Because he is of Vietnamese descent, his best hope for a match lies within the Asian community.

I've spoken to Anh and Ted many times over the last three years, but have never had the opportunity to meet them in person. They were going to be in town through Monday and Anh wanted to know if we could meet. I asked her if I could help out at the bone marrow drive.

Since Anh has a great deal of experience dealing with transplant patients in various stages of treatment, she had reservations about me driving to New Orleans and being exposed to the elements. After much reassurance, she relented and got me directions to the church where the drive would be held.

Ted and Anh were manning a tent at a festival celebrating the Lunar New Year where there would be a very heavy turnout of the Vietnamese community. My job was to hand out fliers and talk to people as they came by. Easier said, than done.

I look Asian and thanks to my mix of Vietnamese/Chinese/Anglo-Irish heritage, I'm most often mistaken for Filipino. At the Tet festival, people assumed I spoke Vietnamese and often began addressing me in anything but English. My close friends will tell you that I can throw out expletives in my mother's native tongue and I can communicate fluently with your average one year old, but that's the limit of my ability. I found it difficult to convey the need for people to register in a way that was universally understood. Thankfully, Anh, Ted, and their two friends were way more successful and managed to get a larger number of people to register.

I managed to persuade one young man to get registered after persistently pecking at him every time he walked by the tent. He may have the chance to save some one's life one day and for that, I'm grateful.

I lasted all of five hours before running out of steam and had to call it a day. Ted, Anh and their friends put in fifteen hour days each day of the festival. They are a marvel to behold and their passion and commitment are infectious.

Chris wasn't able to come with me because he was still recovering from the surgery he'd had on Tuesday in addition to fighting off an unrelated bug which required antibiotics. My fabulous local oncologist called in a prescription for Z-pak on my behalf when I started displaying Chris's symptoms on Thursday. Thanks to the Z-pak and Dana's immune system, the bug never managed to manifest in a significant way and all was well.

I'm hopeful that Timothy is able to find a match soon, since I know the anxiety attached to not having a donor. If you'd like to register, or have even thought about doing it, please visit A3M, or Be The Match and order a kit. It literally takes only a few minutes to complete the forms, and take a swab of your cheek. That's all there is to it. You only have to send it back.

Anh and Ted

Two things: 1. It was an amazingly windy day, hence my unique hair style.

2. Thanks to my previous post on my commitment to running and strength training, I'm concerned that readers may think I'm in better shape than I am. Here's photographic evidence that I'm working my way back to a healthier physique. Let's call it the "before".

Anh flanked by her two friends who drove in from Mobile, AL to help.

Wednesday, February 17, 2010

303.8

Chris here,

I have had a problem with my weight for as long as I can remember. When I was in elementary school I was heavy compared to my peers. The same was true in both middle and high schools. My weight just sort of seemed to drift gradually upwards. When I noticed it I would make a concerted effort to bring it back into line, and I might make some small headway, but ultimately I would slide back into old habits and end up rationalizing why that extra 5 pounds wasn’t a such a big deal after all.

With the exception of the period in time when I was in the Army in '93, that’s been the pattern I've been stuck in. I think the Army period was different for the obvious reasons (running all the time, marching constantly, etc) , but honestly no-one can live their life like that forever. Nor does it help that to have one of the most desk/computer bound professions of all time either.

After I lamented about this to a friend at work, she suggested that I look into bariatric surgery. She had a vertical sleeve a couple of years ago and she felt like it improved her life a great deal. I mulled the idea over for the better part of six months and a couple of weeks ago I made an appointment to see a local bariatric surgeon.

He recommended a Lap-Band for two reasons 1)I was uneasy about "rerouting my plumbing " permanently with a bypass and, 2) it’s the procedure my insurance would cover. After a lengthy soul searching discussion with Ann we arrived at the decision to go ahead with it for a dozen reasons: We can't adopt from where we would like to if my BMI is too high, there is a pretty serious history of heart disease on my Father's side of the family, there is allegedly a history of diabetes on my Mother's side, and I want to be able to take care of my Ann for a long-long time into the future.

So yesterday at about 9:00 AM I was being wheeling into the OR for the first real operation of my life (I'm not sure having my tonsils removed when I was 6 counts). The procedure took about an hour, and I was ready to go home about 3 hour after that.

I feel like I have taken the worst beating of my life though. That’s from a combination of trauma to the muscles of my torso and the effects of the anesthesia they gave me. I have a much truer perspective on what Ann was going through with her first round of chemo, after having to dry heave for 10 minutes and be racked with the most exquisite pain; it literally caused me to see red. And then trying not to move just in case I set it off again. Ouch.

Today seems a little better. I'm still sore as all get out but at least I can stand without immediately feeling like I need to throw up. Ann is being very attentive to me, and I think she is enjoying the role reversal.

I'm still feeling a little loopy so I'm going to end this here before it devolves into rambling nonsense.

BTW the title of this post is the weight I'm starting this journey at.

*NOTE: It's Ann, and I'm definitely better at being a patient than I am at being a care giver. Having been on the other end of the equation, I do have a better understanding of how annoyed a patient can be with the constant hovering.

Saturday, February 13, 2010

Year of the Tiger

I just wanted to pop in and wish everyone a happy, healthy, and prosperous Chinese New Year and a happy Valentine's day from a disco Tiger.

Friday, February 12, 2010

Flexing my muscles

The weather was so gnarly yesterday, I'll admit to slipping into pj's after my workout and resolving to stay indoors until I ran out of food or coffee. Then I remembered that I hadn't made a mail run. After braving the sleet in my pajamas, I was rewarded with a letter from LSU.

They're happy to have me back for the fall semester. I'll need to submit an immunization exemption form in order to be able to register for fall classes, which is no big deal. Either Dr. B. or Dr. K. will need to sign off on it and I think I have ample reason to be exempt, so I'm not worried. The worst that can happen is that I'll have to get a shot. Pffft. Bring it on.

In the meantime, I need to decide on which correspondence class to take first. It's a toss up between finance, marketing, or management. I'm leaning toward marketing since it's been a dog's age since I've done balance sheets and management bores me to tears.

I'm so excited, I might have to treat myself to a new backpack.

I'd also like to thank all of you for your very kind comments regarding my new workout regimen and my appearance. I'm a work in progress and I'm seeing signs of improvement. As for thinking I'm pretty, you guys made me blush. Thank you. :)