Thursday, January 28, 2010

Have you registered?

I first heard of little Barry Pham through AADP. He's only 9 months old and has been diagnosed with acute biphenotypic leukemia. It's a rare form of acute leukemia where the lineage is of both myeloid and lymphoid origin.

He needs a bone marrow transplant and is of Asian descent. For those of you who have followed my story from the beginning, you know just how precious minority donors are to the marrow registry. There are too few who are registered and too many patients needing a match. I was one of those patients until a very generous woman was found who was a close enough HLA match.

It literally only takes ten minutes of your time to register and is absolutely painless! Just ten minutes to potentially save a life. We regularly waste that amount of time doing less important things.

Take the time to help save someone like Barry. Go to Be The Match and order a kit. It's free if you're a minority. There is a small fee if you're not a minority which helps cover the cost of typing. You could also visit A3M to get registered. You could also order a kit from AADP.

A bone marrow drive is being held for Barry Pham January 31 in San Jose, CA. For more information, please visit: http://www.savebarry.org. If you live in the area or nearby, please consider going out to register and bring your friends.

More people could be saved if only more people would register. Be a hero, save a life.

Monday, January 25, 2010

Terror

The following list of definitions is courtesy of http://www.dictionary.com/:

--noun

1. intense, sharp, overmastering fear: to be frantic with terror.

2. an instance or cause of intense fear or anxiety; quality of causing terror: to be a terror to evildoers.

3. any period of frightful violence or bloodshed likened to the Reign of Terror in France.

4. violence or threats of violence used for intimidation or coercion; terrorism.

5. Informal. a person or thing that is especially annoying or unpleasant.


There is a very small compartment in my mind wedged between the box filled with the inexplicable, occasional fears of things like fish in open water and mice out of context, and the control room where the "PANIC YOU ARE BEING CHASED BY ZOMBIE HORDES/MUTANT ALLIGATORS/MACHETE WIELDING SERIAL KILLERS" button resides. The lid is almost always closed and everything usually fits neatly inside. This is where I keep my fear of things that might realistically happen. It's where I hide leukemia.

The size of the container never changes, it is forever static. Unfortunately, the size of the terror sometimes grows too big to remain neatly contained and one corner of the lid lifts allowing something to peek out. A slow and slimy trickle manages to leave a smear on my tidy little consciousness that I cannot abolish.

It is of no consequence that I am well and that all tests continually return with no evidence of residual disease. Recent lab reports profile a mostly functioning immune system busy making cells. My temperature consistently runs one degree below normal and my energy levels are good. And yet, when I'm faced with the opportunity to try and resume a normal life, leukemia whispers something ugly into my unconscious mind.

This weekend, after running errands, Chris and I stopped to grab a bite to eat at a specialty grocer/deli in our neighborhood. As we finished ordering, I heard someone call my name. It was a client from a time before leukemia, when I worked at Harold's. I had walked right past her and her beautiful family without registering them. She hadn't changed at all and was just as lovely as I remembered.

I had forgotten that she'd moved to the area until I saw her face, heard her voice. She wanted to know how Chris and I were and as I answered her questions and caught up with her, I felt that familiar awkwardness creep over me. It causes me to be unsure and to stumble over my answers even though I can recite my medical history by rote.

I've been dealing with doctors and nurses and various medical staff for so long, I've forgotten how to make casual conversation. I either say too much, or not enough and then there's the chemo brain thing that causes me to exchange words.

When I confided my awkwardness to Chris he reassured me as he always does.

Last night, he announced his plans to volunteer for the American Cancer Society. He brought up their website and began reading off the different ways a person could volunteer. Every now and then he'd point something out and say, "This might be something you could do." He also very sweetly suggested that getting out of the house to do something not directly related to my cancer might help me overcome my awkwardness.

It's his way of trying to convince me of something. He's dropped hints about enrolling for classes and volunteering ever since I posted my intentions to do so on the blog. He knows that I can stand still in one spot until something pushes me into action. I can say, "I'll take care of it tomorrow," but tomorrow is always filled with more important things that aren't really that important.

When I was given clearance to take on a few more everyday challenges, terror crept out and took hold of my hand. So long as I did not move, terror did not speak, did not open its eyes, did not exhale one rancid breath. As I was being gently shepherded into action, terror moved just the tiniest bit. It whispered, "Remember the last time you registered for classes?"

The last time I registered for classes at LSU was June 2008. We were set to close on a house and Chris had started a new job a few months earlier. The day we were to sign documents for the closing, I was in a hospital room in Houston, hooked up to an IV. This was the very last weekend in June.

And so, I only made very half-hearted attempts to follow through with my plans. I looked into what classes I could take through correspondence or looked into volunteering opportunities, but never moved past the threshold of looking into doing. Terror told me that so long as I held still and let it keep holding my hand, leukemia wouldn't find me.

Today I took the first step necessary to taking classes. I've submitted an application to LSU as a re-entering student. I must wait for admissions' approval before I can register for correspondence classes that will count toward my degree. I looked up my senior college advisor. Seeing his name made me smile. It's an instructor that I've taken classes with. He's been the most exacting teacher that I've had to date, so much so that younger students constantly groused about his methods. In a few years, they may understand why he teaches the way he does. He loves the subject and he wants you to succeed and so he holds you accountable. His are the only subjects that I can remember in fine detail. He's been my advisor once before and he's genuinely a really nice guy who cares about his students.

I will register to volunteer tomorrow. I need to make up my mind between the American Cancer Society and the Leukemia and Lymphoma society. Before I do, I'm going to look into local opportunities to help Be the Match.

I have pushed terror back into its little box and closed my mind off to the whispers because I've decided that terror is a liar. I'm in charge of my own life.

Wednesday, January 20, 2010

Monthly lab

Today was my monthly appointment with my local oncologist and I'm happy to report that he was pleased with my progress. My numbers are as follows:

WBC: 6.9 k/ul

RBC: 3.62 M/UL

HGB: 12.0 g/dl

PLT: 377 k/ul

ALC: 1.7 k/ul

ANC: 4.7 k/ul

AEC: 0.6 k/ul

alk phos: 190 iu/L

AST/SGOT: 33 iu/L

ALT/SGPT: 67 iu/L

Dr. B. informed me that things haven't changed much from the last visit and most everything looks normal. In fact, he usually tells me that I am normal. Considering the types of patients he sees on a daily basis, I take it as a complement. For him, I'm as normal as it gets regarding blood numbers. Of course, he'll be the first to tell you that I've had more stuff done to me than any of his other patients. I believe this as well.

My platelets are slightly elevated, but not by very much. I've been having allergy issues for the past week, so the platelets don't disturb me. You'll notice that I listed my absolute lymphocyte count, as well as my absolute eosinophil count. After my first transplant, it was rare that I could manage an ALC of 0.1. The cords just couldn't do it. The fact that I register right in the middle of the normal ranges is a reason to smile. As for the AEC, it's evidence that I'm dealing with low level GvHD. It was o.56 k/ul last month at MD Anderson. MDA's equipment is much more sensitive than the machine at my local doctor's office and so I'm working on the assumption that it hasn't really changed. As my transplant doctor said, "If you're going to have chronic GvHD, this is exactly where we want to see it." Then she circled the number on my labs. It felt like getting a gold star.

The last three numbers I referenced concern my liver. The normal range for Alk phos is 32-92 iu/L and as you can all see, mine is still elevated. It's much better than it has been. My AST/SGOT is normal, but the ALT/SGPT continues to be elevated. Normal ranges from 10-40 iu/L.

I'll see my local doctor in another month for more labs. At the end of March, I have a date with the doctors of MD Anderson. It will mark my 18 month wellness visit. For those of you who have been keeping score, this is my next big milestone. I'm scheduled to have a bone marrow biopsy and another bone density scan to see if the walking has helped at all. I'll also see an endocrinologist regarding the osteopenia and some other things related to being postmenopausal post transplant.

I feel very well aside from the 6 pounds that I've put on since the start of king cake season. My obsessional love of king cakes trumps my vanity and so I'll continue to eat the empty calories until the scrumptious little confections disappear for another year. Since I know one of my friends is going to leave a comment about a certain bakery that offers them all year long, I'll admit to knowing where it is. For whatever reason, I will not eat a king cake out of season. It just doesn't seem right. Much like eating fresh asparagus in the dead of winter. They're so much better in season.

I'm sure Chris is going to read that last paragraph and howl with laughter since he's witnessed what I can do to a helpless king cake. He doesn't get it and that's okay, because it means more delicious empty calories for me.

Sunday, January 17, 2010

Little things

Last Friday, 01/08, I started getting that familiar sensation that precedes an almost complete cessation of activity in my digestive system. That little premonition is always followed by a monster case of indigestion and before I know it, I look six months pregnant thanks to a swollen abdomen. This goes hand in hand with constipation. There. I said it.

I also develop a pain on one side of my torso. It was on the left this go around. While I was being treated for leukemia in 2007, I had my first run in with this phenomena. The transplant doctor who was seeing me while my regular doctor was out on maternity leave explained that occasionally, someone who has had a lot of chemotherapy can develop neuropathy in the gastrointestinal tract. Since I had a significant case of neuropathy in my hands and feet, he speculated that I was also suffering with it in my GI.

That episode lasted for about ten days and was only helped along by a sickeningly sweet syrup that my leukemia doctor prescribed to me. I had to take two tablespoons every four hours until I was able to have regular bowel movements. I went through two large bottles in two days.

Since then the problem has come and gone. It has little to do with my diet and lately I've noticed that it happens every two months or so. It usually occurs right after a flare up of skin GvHD. My local doctor recommended magnesium citrate that last time I talked to him about it. You can get it over the counter at the drugstore and it comes in fun flavors like purple or red.

What's that? Colors can't be flavors? I beg to differ. The purple is labeled grape, but it tastes like an alien imitation of concord grape juice diluted with a heaping scoop of salt. The red is supposed to be cherry. It's salty and sour. Did I mention it's carbonated? They also stain anything they come into contact with.

I think my dear doctor forgot that I take mass amounts of magnesium on a daily basis and have built up an immunity to the little side effects that accompany the supplement. The magnesium citrate never does anything for me physically. Psychologically, it makes me want to hunt down the research and development guys that thought it would be funny to label the red and purple flavors cherry and grape.

A local emergency room doctor suggested I take Miralax on a daily basis. This was roughly the point that I realized that he was just throwing things out in the hope of finding a solution. I know my case presents a unique challenge to the MD's in town and I can't fault them for not knowing what to do.

This last go round, I emailed my transplant nurse asking for the prescription level stuff. She was out, but the nurse filling in for her promised to get something called in. I picked up the prescription two days later. Since the universe has a sense of humor, the problem resolved on its own the day before the medicine was ready.

I'm over-sharing in case there's another transplant patient out there who may be suffering from a similar ailment. I only know two other people affected by this and neither are transplant patients. I've been told that it happens amongst transplant patients and the doctor who initially caught it wasn't surprised by my presentation.

While I was convalescing, I finished making the throw pillow covers and assembled the knit purse. I even managed to finish stitching a shrug that I started knitting in 2007. It's currently soaking in the washing machine, waiting to be blocked.

One of two throw pillows I managed to piece together. I only had to redo the first one three times. It's a long story involving sewing in a zipper and chemo brain. Once I got it sorted out, the second pillow was a snap.



















A close up of the purse. For the knitters out there it's a repetition of brioche stitch that's been smocked. I have a closet obsession with smocked fabric and decided to take a chance with smocked knitting. It's not the same for obvious reasons, but I like the end result.
























Here's the bag by itself.
























Behold the fancy lining I made. Chris suggested pockets after I'd already sewed it into the knit pouch. I had to agree that pockets made sense, so I ripped the lining out and put in four pockets.

Sunday, January 10, 2010

a week off

I'm popping in to let you all know that I'm still here. I've been consumed with projects this week and the days and hours have gotten away from me.

Here's a few pictures of the mystery knitting project from before Christmas:



























It's an afghan that took me a little over four months to knit and was a gift to Chris's Dad and Stepmother. It's the largest project that I've knit up to date and took a lot of concentration thanks to all of the different stitches it involved. Chris actually suggested that I knit them a keepsake some time ago, but it took a while to find just the right pattern.

I'm sure I could have had it done in about half the time, but it was a gift for loved ones so it had to be just so. Each time I made a discernible mistake, I had to rip the knitting back and begin again. I despaired of ever finishing it, but I finally did with a few days to spare.

I'm currently finishing up a knit purse as a gift for my friend Laren. The knitting bit is done and that was a breeze, but the lining is becoming something of a chore. It involves sewing, a skill I haven't flexed in almost a decade.

Chris bought me a sewing machine for Christmas to replace the one that had become a casualty of the moving company and sewing the lining for Laren's purse was my inaugural project. Thanks to my little learning problem, it took me three days to understand the instructions for cutting the pattern. Ultimately, I only needed to add a handful of measurements together, then add in a few seam allowances. It took me three days to get it right. Three days to cut a rectangle.

I managed to sew the lining into the purse a few days ago and have been working on attaching the handles. Thus far, I'm not crazy about the way that looks, so I'll probably take the lining out and make a few modifications. It could take a while, but I have faith that it will get done. Laren has no idea that I'm doing it and I'm pretty confident that although I've advertised that I'm making it, she'll still be surprised.

Concurrent to this project, I'm also working on making throw pillows for the couch. I've been treating these projects as stimulants for my brain. So far, it's working and I'm definitely feeling challenged. Of course, the living room looks like it's been vandalized by fabric vigilantes and I keep finding the cats playing with random bits of thread.

I've also been dealing with some gastrointestinal issues which have been sidelining me for the last few days. It's not GvHD. It's the complete opposite. Things are starting to move in the right direction, so I'm hopeful that this will be over soon.