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. :)

Wednesday, February 10, 2010

Another week

I saw my local oncologist for my monthly check-up today. He told me I was a star patient and that my blood work was the most normal he's ever seen it. For those who are interested in the numbers, here you go:

WBC: 8.5 k/ul

RBC: 4.01 M/UL, normal is between 4.2-5.4 M/UL

PLT: 390 k/ul

ALC: 1.8 k/ul

AEC: 0.8 k/ul, this reading tells my transplant doctor that I'm living with mild, chronic GvHD.

ANC: 5.9 k/ul

Alk phos: 140 iu/L, normal is between 32-92 iu/L

AST/SGOT: 25 iu/L

ALT/SGPT: 39 iu/L

The last three numbers are indicators of what's happening with my liver. It's been over a year since the last two were in the normal range. I'm so close to normal with my Alk phos and I'm hoping that it's only a matter of time. Maybe I was suffering with uber-mild GvHD of the liver and now it's clearing up. Maybe it was one of my medications. Who knows, but I'm thrilled to see things returning to normal.

My local doctor and I have reached the point where there's not a lot to discuss health wise. He checks me for all of the usual things and takes a look at my hands to gauge the graft versus host disease affecting them. It all takes less than ten minutes. I'm beginning to wonder when I can space my visits further apart.

Next month, I go to Houston to be assessed for my eighteen month milestone. This one's a big deal since I only made thirteen months with my last transplant. This is the one where I get to stick a flag in the ground and move forward just the slightest bit.

As for taking classes, I'm still waiting. I checked my LSU account and saw that a decision has been reached, but I have to wait to be notified by mail. So far, I haven't received anything and I'm beginning to climb the walls in boredom.

I have a finite number of friends who appreciate crafty gifts. At the moment, I have four things in the works and I'm beginning to get burned out on the whole "keep yourself entertained shtick". I'll post pictures of those things once they're done and in the mail to their intended craft victims.

A few weeks ago, I made a decision regarding my fitness level. Compared to other transplant patients at the same month marker, it's stellar. Compared to your average four year old, it's not so hot. Add in that I'm post-menopausal thanks to all of the chemo and you have the makings for a walking disaster. I don't want to break a hip before I'm forty and I hate that I struggle with lifting a gallon of milk above shoulder height--I'm 5'2" and the milk goes on the top shelf of the fridge, in case you were wondering.

I'm starting out slowly by holding myself accountable to certain fitness goals. I'm going to try to get ten miles of running in each week. I won't beat myself up if I don't hit it everytime, but I need to be close. I'm running every other day for at least forty minutes. I'm also doing twenty-five minutes of strength training on the run days. The days that I don't run, I'm doing forty-five minutes of core/strength training.

My lower body is so sore from the workouts that I wouldn't be able to outrun a rabid sloth at the moment. I know it will get easier with time and I'm hopeful that there may be a 5K in my distant future. I'm not looking to get beach-body ready. I just want a healthy heart and mind and I believe this is going to help.

Now, because I promised my friend Lisa, here's a current picture of what's happening on the top of my head. Most of you will notice that I've been non-compliant and colored away my gray. I'll confess to it next month when I see Dr. K. again.

Wednesday, February 3, 2010

Happenings

Last week was a near wash since I spent the bulk of it in the throes of another digestive episode. In addition to dealing with a grossly distended abdomen and that familiar pain on my side, my back started to spasm much like it did after the car accident last September. But wait, it gets better. Chris hurt his back last week which meant an emergency trip to see his internist who prescribed a muscle relaxer and some pain patches.

The two of us creaked and groaned through the week as best we could. My GI tract started slowly working again this week and I've resolved to speak with a specialist as soon as I can get an appointment. Chris is slowly recovering, as well. He says that the pain isn't nearly as bad as it was, but his back is still bothering him.

I still haven't heard anything from LSU regarding my application which doesn't mean much. For all I know, an acceptance letter is sitting in the mailbox that I haven't checked for close to a week. For those who aren't familiar with the neighborhood, the mailboxes are located in two central locations a few blocks away. I'll make a mail run later today.

This week is dedicated to doing all of the things that I wasn't able to get to last week thanks to the whole digestive debacle. I have a few craft projects to finish off and some organizing to do. I'll post as soon as I know about classes.