Living my life

It's been too long since my last post, but I don't have anything to really share. I did see my local hematologist last week and my blood work was blissfully normal. Every single number, save for the red blood cells and platelets which were so very close to normal--I'm talking fractions here, that Dr. B. considers them normal.

Chris continues to be treated for medical issues arising from June's car accident.

I'm trying to get financial aid straightened out for the upcoming school year. I wasn't able to take enough hours last year to automatically qualify, so I must file an appeal and acquire documentation to satisfy the department as to the reason for my lighter than usual load. I think having a liver the size of a newborn and lungs full of infiltrates might qualify.

I continue to work on my independent study classes and keeping a low profile.

Excitement for the week

This past Monday, I received a paper copy of my schedule of upcoming appointments at MD Anderson. I'll be honest, I usually only skim these letters. I've become spoiled by the internet and prefer to check for my appointments through MDA's website. This time, I paid attention.

I was scheduled for a bone marrow biopsy in September. I'd just had a biopsy in June following March's strange findings. At my last visit in June, Dr. K. told me that I wouldn't need to be back until December. Having done this dance for the last 4 1/2 years, I have learned that something like this generally means that the results of your last test were questionable. It was the first thing that came to mind and it left me feeling a little disturbed.

I didn't feel like I had cancer. I certainly didn't feel like I had some strange mutated chromosome lurking deep in my marrow. I did have a t(4;11) translocation when diagnosed with leukemia. I know you can't feel something so very minuscule on its own, but you can feel the cascade of symptoms it accompanies, like leukemia.

I felt well. I felt like myself. I pushed the kernel of worry into the bag I keep next to the box in my mind that holds the really scary stuff. I sent an email to my transplant nurse asking about having a bone marrow biopsy so soon after my last one. I waited.

Cathy forwarded my message to Dr. K. I got the news yesterday: the cytogenetics from June were clean. The t(7;11) translocation found in March's biopsy was an artifact. I don't have cancer. I celebrated by going to the grocery store, because after so much time spent in isolation, feeling like a creature from another world, that's what you do. It made me happy to do something so fundamentally normal. Buying 3 types of ice cream didn't hurt either.

The other half

The last month that I was on steroids, my total weight gain ballooned to 30 pounds. I was still hitting the treadmill for 80-100 minutes a day, 5 days a week and watched every single thing I ate. I can only assume that my body's hyper-sensitivity to steroids was partly to blame. My pokey metabolism is also culpable.

I stopped taking steroids in March and for a month, I tried really hard to start losing the weight. I consistently worked on the treadmill and even started substituting low calorie, high protein shakes for lunch. To show his support, Chris even started drinking the not so yummy shakes. I managed to lose 2 pounds. He lost 8. My local oncologist assured me that once the weight started coming off, my weight loss would probably accelerate.

It didn't, so I decided to sign up for a weight loss program. I'd been dithering about doing it for weeks, but after talking to my sweet friend Wendy who was doing the program, I signed up. I'm not going to name the program since they get enough promotion, but will tell you that it's the one where you count points. Yes, that one.

I lost 3 pounds the first week. It's been 7 weeks now and my total weight loss, including the hard won 2 that I lost on my own is 14 pounds. The diet is really easy to follow and there's nothing that I can't eat so long as I balance my points. Chris is losing weight as well since he essentially eats what I've prepared.

I've been tinkering with some recipes and have come up with 2 that I'm happy to share. The first is for mac and cheese and was inspired by The Pioneer Woman's fancy macaroni. Her's is to-die-for delicious and laden with butter.

Here's my take:

Ingredients:

2 Cups uncooked wheat macaroni elbows

2 TBS butter

2 TBS all-purpose flour

1 1/4 Cups skim milk

1 egg yolk

1/2 tsp kosher salt

1/2 tsp ground black pepper

1/4 tsp onion powder

1/8 tsp nutmeg

4 ounces Kraft 2% milk shredded cheddar cheese

1/2 Cup 1% milk cottage cheese

3 strips bacon, cooked and coarsely chopped

Preheat the oven to 350 degrees.

Cook the macaroni according to package directions.

While the pasta is cooking, melt the butter in a saucepan over medium heat. Once the butter has melted, whisk in the flour until it's completely incorporated. Pour in the milk, whisking until thickened, about 3 to 5 minutes.

In a separate bowl, lightly beat the yolk. While whisking constantly, slowly drizzle some of the thickened milk mixture, about 1/4 cup, into the yolk. Once totally incorporated, add this back into the saucepan and whisk until fully blended. Stir in the salt, pepper, nutmeg, and onion powder.

Add the cheddar and cottage cheese to the saucepan and stir until the cheese has blended, about 5 to 10 minutes. For whatever perverse reason, the cottage cheese takes the longest time to break down. Be patient, it will happen. Once the sauce is smooth, stir in the chopped bacon.

Stir in the cooked and drained pasta, then pour the entire mixture into a small baking dish--I use an 8 x 10, and smooth out the top. Bake for 15 to 20 minutes. The recipe makes 6 to 8 servings.

As the recipe is written and divided into 6 portions, each portion is 8 points on the diet that shall not be named. It's a big serving and could easily be cut down. The recipe is really flexible and can be tailored to suit your tastes. Change the seasonings or the types of cheese. If you prefer stove-top mac and cheese, leave the egg yolk out of the recipe and skip the oven. The bacon adds a nice smokey, salty element. The cottage cheese makes the sauce incredibly creamy. It doesn't taste like diet food and passes the Chris test.

The second recipe satisfies my sweet tooth and gives me something to do with over-ripe bananas.

Banana muffins:

Ingredients:

3-4 really ripe bananas, mashed

1 egg

1/3 Cup butter, melted

1 1/2 Cup all-purpose flour

1/4 Cup plus 2 TBS packed brown sugar

1/4 Cup plus 2 TBS splenda for baking

1 tsp baking powder

1 tsp baking soda

1/2 tsp salt

dash of cinnamon

Preheat the oven to 375 degrees. Lightly grease a 12 muffin pan or line with cupcake papers.

In a large bowl, beat together the banana, brown sugar, splenda, egg, and melted butter until thoroughly combined, about 2 minutes.

Add the flour, salt, cinnamon, baking powder, and baking soda and mix until just combined. Don't over mix it or your muffins will be dense and tough.

Spoon the batter into the muffin pan and bake for 18 to 20 minutes. One muffin equals 4 points on the diet.

*I've tried this batter for banana bread. It doesn't quite work in loaf form.

Preliminary results

The preliminary results of my bone marrow biopsy from 6/20 showed no leukemia. I won't know anything about the flow cytometry for a few more weeks. As for the cytology study, the results are still a few months away. It was the cytology report from March that showed the strange translocation, and so it is the current cytology report that we're waiting on.

Chris is still suffering from the car accident. Interactions with the at-fault driver's insurance company have been difficult. As of this moment, nothing has been resolved. We've retained an attorney, so I won't be discussing the event on the blog. When I'm able to say something, I will post.

Stumping my poor doctor

My life has been a bit more full than I would like this month. I'll take pity on you all and only talk about the last few days. Friday, June 17, Chris was in a horrible car accident. While Chris was driving in to work, a man in a super-duty pick-up truck drove through an intersection and hit Chris' car right in the driver's side door. The other driver did not have the right-of-way and drove across 2 lanes of oncoming traffic and through a median. The impact caused Chris to hit his head against the pillar between the driver's side and passenger window. He was taken to the ER and had a CT scan as well as X-rays.

I got to the hospital while he was out getting scanned. He was discharged a few hours later and has been recovering since. There's still a bump on his head and he continues to get headaches in addition to being sore all over. Thankfully, he didn't break any bones.

We're in the process of dealing with the other guy's insurance and that's all I have to say about it. I'll keep everyone posted as to Chris' recovery.

As for me, I had a few appointments in Houston on Monday. One was a regular check-up with my transplant doctor. The other appointment was for some testing related to my transplant, but having little to do with leukemia. I haven't blogged about the issue, and am sorry for being cryptic. I'll post about it in detail once the test results come in and I have a better understanding of what's going on. All I know is that it's not life-threatening and so you shouldn't worry.

The cytology report from the bone marrow biopsy I had done in March was finally available. My doctor had ordered several molecular studies that are routine when dealing with bone marrow transplant survivors. Some of these tests take days, most take weeks, and some, like the cytology study, can take months.

The FISH test showed no leukemia clones with a MLL gene rearrangement. Clone cells are effectively the little buggers that kick off the whole leukemia process The clinical flow cytometry study was negative for minimal residual B-lymphoblastic leukemia (this is the type of leukemia I was originally diagnosed with).

I rarely go into this much detail when sharing results, but felt it was necessary so that you all could put the next set of results into perspective.

The cytology report showed an anomaly. 20 cells were studied. Of those 20, 19 were diploid female karyotype 46, XX. This means that they were normal, female and had the correct number of chromosomes. 1 cell was determined to be pseudodiploid metaphase 46, XX, t (7;11) (q22;q13). Fundamentally, this means that the cell was captured in the midst of development, that the correct number of chromosomes was present, that it was female, and that it had a translocation of the number 7 and 11 chromosomes.

Generally speaking, a translocation occurs when portions of the chromosome swap places. That's a quick and dirty definition and doesn't encompass the whole of the process. To further put things into perspective, my original leukemia included a t (4;11) translocation which meant a transplant was my only hope.

Before yesterday, I'd never heard of a t (7;11) translocation associated with ALL. Dr. K. explained that it simply doesn't happen with my form of leukemia. My transplant doctor was very thorough in explaining what this finding could mean. She believes the cell was an artifact, meaning that it was a one time occurrence. The cell may have been created during the process of testing. For the sake of due diligence, another bone marrow biopsy was scheduled for the same day. She wants the same tests performed to see if another cell with a t (7;11) translocation appears.

If it does show up again, I'll be monitored. I'll probably start taking maintenance chemotherapy if it does, but that's not certain. As my doctor explained it to me, there are no studies to guide any treatment. I got the impression that the transplant doctors that discuss my case would be making it up as they went along.

That is the worst case scenario.

I want to stress that my doctor felt that we weren't going to have to go there. I believe her. I can tell you that I feel well. I don't have any of the symptoms that were present when I relapsed in 2008. I'll even go so far as to tell you that the cashier in the hospital cafeteria gave me an employee discount because she thought I worked at the hospital. She didn't believe that I was a patient. When strangers mistake you for a hospital employee rather than a cancer patient, you want to do a little dance, because it feels like you just regained your normal badge.

To further put everyone at ease, here are my blood counts, including normal ranges:

White blood cells: 8.8 K/UL (4.0-11.0)

Red blood cells: 3.88 M/UL (4.00-5.50) It's low, but most transplant patients have a hard time with making red blood cells. The only transplant survivor who I know that has a regular red blood cell count is Nancy and she just celebrated her 5th year post transplant. Love you, Nancy.

Hemoglobin: 12.1 G/DL (37.0-37.0)

Platelets: 414 K/UL (140-440)

Absolute neutrophil count: 6.56 K/UL (1.70-7.30)

My counts are essentially normal. When I had cancer, my white blood cell count was phenomenally high while all of my other counts were close to nothing. The same held true when I relapsed. I believe my doctor when she tells me that this new translocation is probably an artifact. I won't know for sure until the new cytology study is done. I won't have those results for a few months. Until then, I'll continue to monitor myself and check in with my local oncologist.

One more thing to help put this into perspective. My next appointment with my transplant doctor at MD Anderson isn't for 6 months. If she was anxious about anything, she wouldn't have given me such a long break between visits.

As for the other health thing that I'm being so cryptic about, the specialist I'm seeing will have the results in a few weeks. I'll disclose everything once I have the information.

Dori

Most of my regular readers will probably know that Dori Brown was stolen by cancer this week. I say stolen because I still believe cancer is the worst kind of thief, indiscriminate and indifferent to its victims and their families.

If you haven't read her story, you can find it here and here.

The first thing you might notice when you go to either site is her unbelievably bright smile, or maybe you'll notice the warmth in her eyes. I was lucky enough to meet Dori in April and I can honestly say her pictures don't do her justice. She was so much more vibrant in person. For lack of a more poetic description, she was just so Dori.

I've wanted to write something to honor her since I learned the horrible news, but my heart has been filled with tacks and the words refuse to come.

Dori was an infinitely gorgeous soul who touched every single person she came into contact with. I came to love her through her sweet husband's beautiful writing and meeting her in person only served to solidify my belief that she was one of those very unique individuals who instantly inspires love.

My heart hurts for Jim and their beautiful children, and I wish I could write something more fitting, but I just don't have the words.

Milestones that don't include cancer

Today, Chris and I are celebrating our seventh wedding anniversary. Not in a hospital. Free of cancer. At home. It feels good to be able to say those things.

Happy anniversary to the love of my life. I wouldn't be here today if not for him.