Saturday, December 1, 2007

Day + 186

I may have tempted fate with my posting yesterday, after all. We have a bit of a situation developing here tonight. We got take out from a restaurant that I've never eaten at before. Dixie frequently lunches there during the week, and we thought it would be a nice change from our usual haunts. Half way through my meal, I found a piece of very undercooked beef, which wouldn't have bothered me were I a normal person.

Chris called MDA and had my transplant doctor paged and we're just waiting for her to call back. I don't think that there's any particular protocol that gets followed in this case. It may just be a wait and see situation. In fact, I'm pretty sure it will be. No magic pill for undercooked beef.

I'm just going to sit in an out of the way spot until the panic dies down. I'll let you know what happens.

Friday, November 30, 2007

Day +185

WBC 5.2 K/uL
RBC 3.70 M/uL
HGB 11.9 G/dL
PLT 403 K/uL
ANC 3.4 K/uL

My doctor's appointment was completely uneventful today--just like we like it. My numbers are all in or close to the normal range. Dr. Bienvenu teased me for being disappointed that my numbers hadn't all reached completely normal levels. I can be a very competitive person, especially against myself. Weird, I know.

I've been having a problem getting my v-fend prescription filled the last few days. This is an anti-fungal pill that I have to have twice a day. It's much nicer than sporanox liquid and doesn't leave a disgusting after taste. It costs upwards of $2000.00 per prescription and this is the reason that I've been having problems. The insurance company was holding it up because of the cost, which I found strange, since I've been on it for 6 months and there's never been a problem before. I'll be completely out of it on Sunday, which upset Chris, so he called the doctor to see if I could make a substitution, while I called the insurance company.

While I tried to explain the situation to the customer service agent, who just could not understand what I was saying, Chris was talking to my PA. It was like banging my head against silly putty. Sometimes it bounced, sometimes it got stuck. Long, convoluted story short, my PA called my doctor and was told that I'd be discontinuing the v-fend next month, so I could just get a jump start and stop early. Imagine me trying to explain that to the customer service agent.

December should be an interesting month. For the first time in my adult life, I won't have to go to the mall or any satellite boutiques either to work or shop. Okay, it's not so much that I don't have to, but more so that I can't. Either way, it puts a smile on my face. No long lines, no crazy crowds, not to mention parking rage. I've also found out that I will definitely be stopping a number of medications that I've been taking for preventative measures. I haven't quite sorted out my feelings on this. On the one hand, it could mean that my doctors trust my immune system to do what it's supposed to, and on the other hand, it could mean that I am now wide open to catch a cold or virus. Maybe a little of both.

Aside from the EBV flare up, I haven't been generically "sick" in over a year. I had strep throat in October of 2006 and that's the last fundamental illness that I can remember. I'll probably think the world is coming to an end when I catch my first cold. Babies just look so miserable when they're not feeling well and I essentially have a 6 month old's immune system. We'll just have to wait and see.

Not to tempt fate, but life is pretty great right now. I feel really well and my bald patches aren't bothering me as much as I would have thought. I'm eating like I'll never see food again. I've got the baking bug and have been keeping Chris and Dixie stocked in sweets. I may get kicked off the island for this compulsion because we're all snackers. I've already had 4 pieces of peanut butter fudge today. I'm thinking about having a few more just to keep my strength up.

Tuesday, November 27, 2007

Day +182

We had a bit of a scare Monday night. Just as we began eating dinner, Dixie began choking on something. Chris performed the Heimlich and I called 911. While waiting for paramedics, she complained that she felt a burning sensation in her throat and that it still felt like something was lodged there. For those of you that have kept up with the blog, you know that something similar happened a few months ago. She's had difficulty swallowing for a few months and doctors haven't been able to give her a reason.

I had to isolate myself in one of the bedrooms when the paramedics arrived, so I can only tell you what happened second hand. Dixie's heart rate and blood pressure were dangerously high and she was still having trouble with her throat. She was taken to the hospital with Chris right behind her. The ER doctor believes that the stricture in her throat closed, trapping food and causing her esophagus to spasm in an effort to get the food down. The burning sensation was stomach acid trapped in her esophagus. At some point in the hospital, the stricture relaxed and Dixie was able to swallow some liquids. She was released and brought home in one piece.

For the first time in quite a while, I was able to worry about someone else, hovering annoyingly over Dixie and asking questions every few minutes. She's much better now and I am very grateful just to be able to give her a hug.

Chris had a dentist appointment and for those of you who know him know what a milestone that was. I will confess to being one of those people who loves the dentist. It doesn't hurt that mine are really great. I love having my teeth cleaned and the words "root canal" don't bother me. Also had quite a few of those. I've been able to nap during procedures and know that this marks me as a freak. Chris, on the other hand, has only been to the dentist once since I've known him. I know this has a lot to do with his pediatric dentist and it really is a shame that some people can just scar you for life.

He has a few cavities and needs to have a root canal and his teeth cleaned. This will all be done under conscious sedation next month. Chris is really anxious around dentists. He also gets to have Valium. Needless to say, he is not looking forward to any of this. I'm jealous because I haven't been able to have my teeth cleaned this year. I'm going to see if I can badger my doctor into letting me get it done locally, instead of having it done by the dental oncologist at MDA. I am a freak, I know.

My skin continues to be dry and I don't really think it's getting any better. In addition to this, my hair has started to fall out again. It started with my eyebrows getting thinner, and then most of my lower lashes fell out. The hair on the top of my head is noticeably thin, with intermittent bald patches. It's not like the first two times all of my hair fell out. This has been more gradual and frustrating. I'm fairly certain that this is a result of the Rituxan treatment. It has a half-life of something like six months, so it will be swirling around in my body for a little while longer. Maybe this time my hair will come back in a different color--other than white, please.

It's been pretty quiet, otherwise. I finished knitting Laren's present and just have to block it so that it stops curling up on itself. I spent some time looking through books for my next project, swearing to Dixie that I would find something more challenging than a scarf. About an hour later, I started knitting myself a scarf. Go figure. In my defense, I get cold easily now that I'm post transplant and I haven't knit anything for my self. This is true if you discount the hat I knit this summer. I think I misread the instructions, so it ended up being much smaller than it should have. It is stretchy and I can get it on my head, but it really is sized for a small child.

I have my weekly blood draw on Friday and other than that, there are no concrete plans for the rest of the week.

Sunday, November 25, 2007

Day +180

When I was first diagnosed with leukemia, I thought no problem, people get treated for this everyday. When I was told that there was a unique mutation associated with my particular type of leukemia, I thought that if they knew such a thing existed, there must be some form of treatment for it. When I was told that I needed a bone marrow transplant, I believed that I was on the road to being cured. Then I found out that my form of cancer usually only shows up in girls under the age of one and oh, by the way, your ethnic makeup makes it nearly impossible to find a genetic match for a transplant.

It never occurred to me to give up. I was told that with the standard chemotherapy protocol for ALL that I'd have a 92% chance of being dead by the end of the year. My insurance company wasn't overly concerned with the fact that I'd be dead and off their books when they denied my stem cell transplant. Still didn't believe it would happen.

I discovered that there were a lot of people who cared about what was happening, and took it upon themselves to do whatever they could to help us. Some I knew very well, and some were complete strangers who had read about our story and wanted to help. I was constantly surprised by how caring people could be and the lengths that they would go to in order to make things happen.

The insurance company gave in and paid for part of my transplant. The part that they wouldn't pay for involved expanding one of the umbilical cords in order to give me more cells during the transplant. The expansion of the cord was an experimental procedure and was not covered by my insurance company. I didn't have to have the expansion, it just happened that a computer randomly assigned me to have it done for a transplant study. The expansion would potentially increase my chances for success and so we were prepared to pay for it ourselves. Someone beat us to it. To this day, we don't know who sponsored me for the study. We've heard rumors implicating a transplant doctor and we've also heard that it may have been sponsored by a private cord bank. A stranger paid a very large sum of money to give me a chance. I hope they know how forever grateful we will always be.

This January, I wondered if I would live to see my birthday. Deep down, it just didn't occur to me that I could really die. I was terrified by everything that was going on and I was worried about how it was affecting Chris and I just wanted to be able to pick up and be normal again. Abstractly, I knew that my prognosis was not good and I could die at any time.

I turned 33 in October. Thursday, I shared a lovely meal with people I love. Today, I sat quietly, alternately reading and knitting. Today marks my sixth month anniversary. I got yet another day to be thankful for everything that has happened to me. I got another day to talk to a friend living far away and another day just to be.

I hope to be able to live quietly for the next thirty years, thankful for every precious moment.

Friday, November 23, 2007

Never been more thankful

Day +178

WBC 5.6 K/uL
RBC 3.65 M/uL
HGB 11.5 G/dL
PLT 450 K/uL
ANC 3.7 K/uL

Today was another trip to the hematologist and Ann's counts are still looking good. Our local doctor continues to say that Ann is the "most normal and healthy looking transplant patient he has ever seen". This time he went one step farther and told Ann that her blood counts are for all intents and purposes "normal", despite being a little below normal in the red blood cell and hemoglobin numbers. I'm not sure the transplant team at MDA would go as far as he did, but it's nice to hear someone in a white coat being positive.

Yesterday was Thanksgiving and I have to honestly say that the meaning of that holiday has been wasted on me for the last 36 years of my life. Why? Because, I never had a concrete understanding of loss or fear. I don't want to say that I've had a sheltered life, but I was honestly as ignorant of the words "crisis" or "disaster", as a dinosaur 65 million years ago would have been when contemplating the fire ball created by a asteroid falling from the sky. That's certainly changed and I marvel over how far we have come in almost a year.

Yesterday as we sat down to a modest dinner I paused to reflect. Not just on how much I love my wife, but how fragile and precious life and love really are. The struggle to defend them is far more difficult than the vast majority of people realize. However, despite all the loss, fear and suffering we have been through in the last year, I have never been more thankful in my life.

Thursday, November 22, 2007

Gobble, gobble

Dixie made three desserts for dinner tomorrow and they're just sitting in the fridge, taunting me. We took turns making side dishes that would be baked tomorrow, just to save on time and cut down on cooking all in one day. Chris will be making turkey since he was officially proclaimed the official "Turkey Maker" by his older sister last year. He seriously makes an amazing bird. It's always moist and flavorful and requires no basting. Twelve hours of brining does make a difference.

I hope everyone has a wonderful holiday with lots of love and laughs and a few well deserved naps. I'm looking forward to spending the day with people I love and calls to friends who are too far away for hugs. I also plan on eating like a champ since I'll be starting a new exercise regime on Friday. Sure I will. :)

Tuesday, November 20, 2007

Something fishy

Day +175

I did something today that just proves that I shouldn't try to do anything important immediately after waking up. All of my medicines are divided in a box that spaces them throughout the day for an entire week. I've been taking them for so long, sometimes I forget to look at the pills before I swallow them. This morning, I took most of my pills without looking, but for some reason I examined my Prograf pill. It's the size of a tic-tac and is banana yellow. This morning it was white which meant that it was double the dosage of my regular pill. I was still half asleep, so I took it without thinking about it.

The reason I have the white pills is because I had to have a high dosage right after my transplant. We still had some left over when my dosage was changed and so it was accidentally put into my case. When I mentioned it to Chris, he went into high gear. I had to call my PA and leave a message confessing what I had done.

Toby called me back while we were at the vet with Squeeze. Disclaimer: I was waiting in the car while Chris handled the appointment. As far as the "overdose" was concerned, she told me not to worry. The Prograf suppresses my immune system so that I don't reject my graft or vice versa. I'm supposed to be weaned from it next month.

Toby also informed me that my FISH test had finally come back. The results were negative. No leukemia, no cancer. I'm very grateful.

After Squeeze's appointment, Dr. Hackett came out to the car for a visit. It was really nice to see him again and I really enjoyed the visit. He's been our vet for quite some time and he has yet to ban us for our ill behaved kitties. They've maimed many vet techs and bitten both Drs. Hackett and Mitchell. I'll admit, I've met a few doctors that deserved to be bitten, so I can empathize with the kitties. Drs. Hackett and Mitchell don't fall into that category. I highly recommend them if you're looking for a new vet.

I discovered a small lump on Squeeze's back and was worried that she might be developing something sinister. I don't know if you'll remember, but she was very ill and under weight when we returned home the first time. The initial diagnosis at that time was that it was viral, but she was exhibiting signs of intestinal cancer. Dr. Mitchell ruled that out, but I couldn't help immediately jumping to conclusions when I felt the lump. The lump turned out to be an abscess that was drained and treated. We were also informed that it looks like her renal disease is progressing, and we've got a few treatment options that we need to consider.

I think it's going to be a an anxious week and I'm sure Squeeze will need a vacation from us when it's done. We have to keep up with how often she vomits, and the amount of water she's taking in, etc. I'm sure it's going to make her paranoid. I can totally sympathize with her. I hate it when people make those kinds of observations of me, but I know it's just because they're worried for me.

For the record, I'm eating like a line backer and my "skinny" pants are starting to fit which leads me to believe that they'll be snug in no time. My hair continues to get curlier with each passing day. You can't see it from the picture that was posted a few days ago, but the hair on top of my head actually stands straight up and curls straight back. I try to mash it down when I'm going out in public. I look manic when I let it do it's thing. Kind of like a demented teletubbie wearing a surgical mask.

We don't have anything else planned for the rest of the week, save for Friday. It's my weekly oncology visit. Hurray. I'm taking a break from cooking and other things inorder to finish some knitting, so I'm hoping for a nice quiet week.

Caroline, I made Bahn Bao and it actually turned out okay. They're like meat pies, only they're steamed. Let me know if you still want the recipe.