Saturday, April 26, 2008

My friends Van and Betty got married this morning and very much to my surprise, nothing happened to keep me from going. Van called me last night to warn me that the ceremony would be conducted outside and he wanted to be sure that I'd be safe going. That's just the kind of guy he is. I layered on not one but two different sunscreens and wore a cardigan over my dress just to be sure that the least amount of skin was exposed to direct sunlight.

I did not burst into flames, nor was I rendered blind by exotic allergies. We met a really nice couple who had no idea of my history, so I felt like I was leading something of a double life. We decided that it would be better for me if we didn't go to the reception since there would be so many people and there was really no telling what I might be exposed to.

The ceremony was beautiful and I couldn't be happier for Van and Betty. So I suppose I can move a peg closer to normal. Chris and I are taking a mini trip tomorrow which should last a few days. I'm not going to say anymore about it since I'm reluctant to jinx myself yet again. We'll probably be without internet for the duration of the trip, so things will be quiet until May 1. I promise to write all about it when we get back.

Wednesday, April 23, 2008

When you're faced with a life altering situation you find yourself as part on an unenviable (maybe) exclusive little club made up of people in similar situations. My cancer diagnosis and consequent treatment landed me in a very exclusive club. The initiation fee and hazing suck, but as a result I've met a lot of amazing people and made some very good friends. Many of these friends I've never met in person, but we keep up with one another through blogs, IM's, and email.

The trouble with this club is that you lose people at an alarming rate and March and April have been horrible months for this. I greet each day with a little dread and anger over their relapses and really hope that some experimental drug or combination thereof exists that can help them. Only modern medicine doesn't work that quickly and qualifying for drug trials usually takes more time than most people have.

Not feeling like I've had anything positive to report has kept me from blogging the last few days. I'm very well with minor GvHD twinges that keep me guessing from day to day. I believe it's the fact that I've been doing well that makes me feel guilty in the face of what some friends are facing. This isn't a pity party--far from it. I refuse to play the "poor me" card because it's not a part of my deck.

I'm working on shaking this funk and I promise to be back in the next few days, recognizable as myself--big goofy smile and all.

Friday, April 18, 2008

Relay for Life

Day +324

We just got in from the Relay for Life event a little while ago and I'm exhausted. I had so much fun taking in the sites and visiting with Paige, Jordan, and Sharla. Dare I say it? I felt normal. Almost like no one suspected that I'd had cancer. As far as I know, they didn't.

Paige's group set up a jail and for just $2 you could have a friend or loved one arrested. It was up to the prisoner to raise their bail based on a roll of the dice. Chris made a blanket donation with instructions to pick people to arrest at random. It was really hilarious to watch "Sheriff" Jordan blow his whistle and pounce upon unsuspecting victims. I was amazed at how willingly people were hauled in and how much fun it was to watch them solicit their friends for freedom. One poor guy only needed to raise $1 to get out and people were actually paying to keep him in. A total stranger made a donation to insure he didn't get out, and that's in addition to friends paying to keep him incarcerated. Without fail newly released prisoners would donate to have the friends that taunted them arrested. As far as fundraising goes, this idea was genius.

I started getting tired after 2 hours, so we called it a night. Paige, Jordan, and Sharla had committed to staying for the total 12 hours--6pm to 6am. These guys are amazing and I'm just glad to know them.

Sharla, I really hope I'm not spelling your name wrong! :)

Please enjoy the pictures and if there's a Relay for Life being held in your neck of the woods, I highly recommend checking it out. It only costs what you want to donate and it's for a really good cause. Who knows, we may run into each other.

Inmates trying to make "bail"

Sharla, Jordan, Paige, and me

Chris looks on as "Sheriff" Jordan picks his next victim

Paige and me

The "jail"

We donated in memory of a few lost friends

More inmates

What's up with my bangs?

Oops, I loaded this twice

Paige and her cupcake

Some of the other booths

Thursday, April 17, 2008


Two posts in one day! Can you believe it?

Paige called me a little while ago to invite me to Relay for Life. It's being held at the LSU field house Friday, 4/18 from 6pm to 6am. Paige and friends will be raising money to help fund cancer research and Chris and I will be there for a little while (probably after 7pm). If you're free on a Friday night, I'd really love to meet any local readers or hook up with long lost friends.

Hope to see you there!
Day +323

Chris had his stitches taken out and all is well. He has to irrigate the wounds daily and he's enlisted me to help. Considering the man had to change bandages and clean catheters for a year, it's the least I can do.

While he was having his teeth done, I was having my hair cut. My stylist is one of those people who has an innate ability to make everyone around her feel good. She's also an angel on earth for so many reasons and I'm just glad to know her. She worked her magic and made my hair lay straight with the aid of a lot of hairspray. I could feel it wanting to spring back into small ringlets. It was strange seeing myself in the mirror with a coiffed do after so many months of being bald. Chris was pleasantly surprised by the normalcy of it all when he picked me up after his appointment.

I've started to observe what looks like the beginning of paronychea on both index fingers and both pinkies. I start to feel obsessive every time I was my hands because of the need to eradicate all traces of water from my fingers. Imagine blow drying your hands at 3 in the morning. It's kind of hard to get back to sleep after that. I'm going through disposable gloves at an accelerated rate in an effort to keep hand washing to a minimum. Before you imagine me swathed in vinyl 23 of 24 hours in a day, let me reassure you that I only wear gloves for food prep and when I have to feed the cats. The rest of the time I try not to touch anything.

I'll be meeting with a specialist in two weeks to start immunizations and I can't wait. Other than that, life is quiet and filled with knitting and baking. I'm hoping to be able to start course work at LSU in the near future. It will be strange after such a long hiatus and I'm sure that my brain will balk at the need to engage again. I'll manage.

Tuesday, April 15, 2008

Day +321

WBC 4.4 k/ul
RBC 4.28 M/UL
HGB 13.5 g/dL
PLT 375 k/ul
ANC 3.1 k/ul

Depending on whose scale you're using my numbers look pretty normal. The white blood cell count is just shy of absolutely normal according to the scale my local hematologist goes by, but as he would say, I'm so close to it that I may as well be normal. I'm enormously happy to see my ANC is well above 1 k/ul. Being neutropenic after so many months of not having to worry about it really set my teeth on edge. Dr. Bienvenu also went on to tell me that I should get a plaque or gold star for being the best looking transplant patient he's ever seen. Considering what he sees on a daily basis that's high praise, indeed.

I'm posting some pictures from our last trip to Houston that I never got around to putting up. While looking at them the other day, I realized how much my body has changed over the course of this last year. I weigh 15 pounds less than I did before I was diagnosed and yet I look 2 sizes bigger than I am. I'm going to attribute it to loss of muscle mass. It's something I'm working on. Amazingly, it takes forever to recoup what you've lost, but so little time to lose it to begin with.

The GvHD/eczema continues to plague me and the folliculitus is starting to spread a little further on all of my limbs. It's too early to say anything about the paronychea, but I'm assuming that it hasn't gotten worse.

Chris is going to get his stitches taken out today, so I'll have to wrap this up. Just wanted to share the good news.

Friday, April 11, 2008

It's finally not me!

Day +318

For years Chris has been putting off having his wisdom teeth removed, and every year I harass him about it. He's made appointments to have it done time and again and a day or so before the deed is to be done he always manages to find a reason to get out of it. Until now.

His most recent cancellation was last week, the day after my last round of appointments in Houston. The appointment was made the month before and I was convinced that this was going to be the "one". He cancelled it with two days to go.

This Tuesday he started complaining that his jaw hurt. On Wednesday he developed an ear ache. Desperate and in pain Chris called Premier Dental's emergency line hoping to be able to get in to have the offending tooth looked at. Did I mention that it was a wisdom tooth?

Dr. Cyndi squeezed him in on Thursday and the deed was done. He had his wisdom teeth removed from his lower jaw and they were impressive. I know this because I was sitting in a corner sending moral support his way while he was off in la-la land pretending that he wasn't having teeth extracted. Dr. Cyndi is amazing with nervous patients and she certainly worked her mojo on Chris. She managed to get both teeth out intact in less than 45 minutes and after a few stitches Chris was wheeled out to our car with a silly grin on his face. There was a bit of sedation involved and it always makes Chris a little loopy.
He's in a little pain today and his cheeks are a little puffy. I'm hoping that he feels better by Sunday and I'm very secretly pleased that he finally had this done. :)~

Tuesday, April 8, 2008

Just for fun

My friend Caroline passed this along to me and I thought some of you might find it funny.


7:00 AM - Outside! My favorite thing!
8:00 AM - Dog food! My favorite thing!
9:30 AM - A car ride! My favorite thing!
9:40 AM - A walk in the park! My favorite thing!
10:30 AM - Got rubbed and petted! My favorite thing!
12:00 PM - Lunch! My favorite thing!
1:00 PM - Played in the yard! My favorite thing!
2:00 PM - Looked out the window and barked! My favorite thing!
3:00 PM - Wagged my tail! My favorite thing!
4:00 PM - Chased a bird out of the tree! My favorite thing!
5:00 PM - Milk bones! My favorite thing!
6:00 PM - Watched my people eat! My favorite thing!
6:20 PM - Table scraps! My favorite thing!
7:00 PM - Got to play ball! My favorite thing!
8:00 PM - Wow! Watched TV with the people! My favorite thing!
11:00 PM - Sleeping on the bed! My favorite thing!


Day 983 of my captivity.
My captors continue to taunt me with bizarre little dangling objects. They dine lavishly on fresh meat , while the other inmates and I are fed hash or some sort of dry nuggets. Although I make my contempt for the rations perfectly clear, I nevertheless must eat something in order to keep up my strength. The only thing that keeps me going is my dream of escape. In an attempt to disgust them, I once again vomit on the carpet. Today I decapitated a mouse and dropped its headless body at their feet. I had hoped this would strike fear into their hearts, since it clearly demonstrates what I am capable of. However, they merely made condescending comments about what a 'good little hunter' I am.Bastards!There was some sort of assembly of their accomplices tonight. I was placed in solitary confinement for the duration of the event. However, I could hear the noises and smell the food. I overheard that my confinement was due to the power of 'allergies.' I must learn what this means, and how to use it to my advantage. Today I was almost successful in an attempt to assassinate one of my tormentors by weaving around his feet as he was walking. I must try this again tomorrow -- but at the top of the stairs. I am convinced that the other prisoners here are flunkies and snitches.The dog continues to receive special privileges. He is regularly released - and seems to be more than willing to return. He is obviously retarded.

Monday, April 7, 2008

Dr. Silapunt just called to give me the biopsy results from my hip punch. Folliculitis. Cheese and crackers, you have to be joking. I got stitches for folliculitis. I'm slowly beginning to believe that my poor donor is going to have a hell of a time when he reaches puberty considering all of the weird skin ailments that I've inherited from him. Okay, so maybe they aren't really weird, but I never had to deal with these things before transplant.

My next doctor's appointment is on tax day and that's local.

Sunday, April 6, 2008

I started to feel a bit queasy Saturday night around roughly the same time as the week before. Instead of toughing it out I took an ABH to settle my system and hoped for the best. We're keeping an eye on everything just to be sure.

Sunday was quiet with no signs of illness, so I don't know what to make of the night before. Chris has a theory about it being something I ate. If it was, then I'm grateful for the mediocrity of it.

Friday, April 4, 2008

Another day in the life

Day +311

WBC 2.5 K/uL
RBC 4.08 M/uL
HGB 13.0 G/dL
PLT 460 K/uL
ANC > 1.0 K/uL

I'm feeling a bit brain dead, so I'm going to warm up by writing about something non-serious.

Last week while we were out running errands, Chris suggested that we get lunch, as in go into an actual restaurant and eat in public. Since we were in the vicinity of our old neighborhood, we decided to drop in on a friend who just happens to also own the New York Bagel on Jefferson. By happy coincidence, her name is also Ann and I hadn't seen her in close to two years.

We managed to get in ahead of the lunch rush so we were able to visit with Ann for a few minutes before she got slammed. It's still surreal to get to see friends in person with little restrictions and even stranger to be eating in public. Ann hasn't changed at all and if you're in BR on Jefferson, I suggest you have the New York club at her deli. She was hyper vigilant about making sure that my sandwich was a sterile as possible to the point of insisting that it was served in a disposable container. She's just one of those amazingly thoughtful people who would do anything for a friend without being asked. She certainly did a lot for us while I was in Houston getting treatment over the last year and I'm hopeful that we'll get the chance to have dinner together someday soon. Now, if I could just track down her hilarious brother Matt...

My brain still feels a little slow, but I'll blog on anyway.

I saw Dr. Hymes yesterday and another dermatologist who was doing rounds with her. There's been a slight change in plans as far as my GvHD diagnosis is concerned. Since the GvH issue with my eyes has cleared up and is under control, I'm only displaying symptoms of the dermal variety, which makes treating it slightly more complicated. My GvH of the skin is so minor that it's almost indistinguishable from eczema. Add to this that my last skin biopsy came back as inconclusive--Dr. Hymes did say dead cells were present, but in very small numbers, and it's hard to definitively say that I have GvH. Everybody still with me?

Dr. Hymes wants to change gears as far as my treatment goes. She is starting to suspect that I've inherited the skin problems that will be plaguing my donor. Poor little guy is probably a scaly little mess. She's hypothesized that we'll have to treat me as though I have a slightly worse than mild case of eczema, meaning that I've added a host of prescription creams and unguents to my cadre of medicines. She took another skin biopsy, this time from my hip and I got to add two new stitches to my collection.

I have a brand new lotion that gets applied to my abdomen and flanks and it's side effects are strangely similar to the condition it treats. Itchy, burning, peeling, red skin. Do the benefits really out weigh the risks? It does sting a little when I apply it and I have to do it twice a day religiously. There's a new steroid cream living in the medicine cabinet that I have to apply to my hands twice a day Monday through Friday. On the weekends I get to apply triamcinolone to my hands in lieu of the new cream.

Total body application of Cerave cream has been escalated to at least three times a day. Grrrrr.

As for the deformed fingernails and missing cuticles, the new diagnosis is paronychia. Chris googled it and I do believe that I'll be having nightmares for some time to come. If you like to live dangerously, google it so that you can peruse the truly disgusting pictures of other people's cases. The short list on this condition is that my nail beds have detached from the skin surrounding it and it can't heal because water is constantly getting trapped in the pocket that it's created. I've been instructed to keep my hands as dry as possible and if they do get wet, I have to use the blow dryer set on cool to help eliminate any water that might have crept in. Grrrrrrrr. I also have to use a prescription cream used to treat fungal and yeast infections twice a day for the just in case factor.

The new dermatologist took a skin scraping from a wickedly itchy patch of GvH located on the bottom of one toe and I wait with baited breath to see how the lab classifies it. I also get to use the anti-fungal cream here, just in case.

Dr. Hymes discussed other treatment options including light therapy and tacro cream. She's against both because the light therapy might treat what I currently have, but would most certainly cause a GvH flare up elsewhere. The tacro cream has been "black boxed" by the FDA because it might increase the chance of malignancies after treatment. It's essentially an immunosuppressant just like the prograf I was on. The danger here is that it could cause a flare up of my EBv which would lead to PTLD. Hello tumors. So, she's decided to take the safest course of action and we'll treat all of my little skin anomalies separately with the different creams. I've been warned to be patient with the paronychea as it could take a very long time to heal.

I've been allowed to cut back on the steroid oil used to treat my scalp, so I'm down to once every five days. I've been told that it could be up to six months before my hair fully grows in, if it ever does. Dr. Hymes is allowing me to use rogaine foam if I want to help things along. I'm thinking about it.

After the dermatology visit we went straight to stem cell transplant to see Dr. Kebriaei. We were very pleasantly surprised when she came out to tell us that my numbers were coming up and that she didn't feel the need to see me in a clinical sense since she felt that she would be charging me for nothing. I have to seriously love a doctor who is concerned with the total experience of her patients. My white blood cell count is still below normal, but it's climbed since my last visit. My red blood cell count in solidly normal as is my hemoglobin. The platelets are still above normal, so I'm still a clotting fool.

Chris will probably post the actual numbers after he reads this. I still feel really well, but I'm tired after such a long day yesterday, so that's the end of this.