A heaping scoop of normal

It finally happened.

I am sick. After roaring through 2 semesters surrounded by students unscathed, I have finally succumbed.

This past Wednesday, a classmate who sits next to me in 2 consecutive classes came to school, plopped down next to me and proceeded to cough her head off. I held my breath. I averted my face. I emptied my little bottle of Purell. I developed a sore throat on Friday.

I saw my local oncologist's advance practices nurse after class. Her first inclination was to recommend a wait-and-see strategy. If things got worse, then I'd get antibiotics. She was very sweet, and very knowledgeable, but she wasn't my doctor's regular APN nurse. She was filling in and so she wasn't very familiar with my situation. I give her an immense amount of credit for knowing her stuff regarding transplant patients, though. She sees 2 long-time transplant survivors while assisting her regular doctor.

She knew about my GvHD of the skin, scalp, eyes, and mouth. She didn't know about the GvHD in my lungs. When I mentioned it after the wait-and-see diagnosis, she was surprised. She told me that I sounded too good. She's dealt with GvHD of the lungs and so she knows. Chris told her that I tended to be special when it comes to the presentation of special circumstances. I don't present normally. She conferred with my doctor and the decision was made to treat me aggressively out of an abundance of caution. They didn't want me in the ER over the weekend. I didn't want an infection settling in my lungs. My lung capacity is still diminished and the thought of trying to breathe through a chest infection made me twitch.

I started Z-pak yesterday. My throat is a little more sore today, but I don't feel any worse. Z-pak is a beautiful thing. I have several projects due Monday, Tuesday, and Wednesday, so I'll try to work on them between naps.

Before I forget, my doctor did order labs, so here are the results:

white blood cells: 10.6 k/ul (4.5-10.8)

red blood cells 4.03 M/UL (4.2-5.4)

hemoglobin: 12.8 g/dl (12-16)

platelets: 414 k/ul (150-350) I am a platelet making machine. I always tend to run on the high end, so no need for alarm.

absolute neutrophil count: 7.9 k/ul (1.5-10)

For all intents and purposes, my counts are perfectly normal for me.

Three years on

Three years ago, a complete stranger donated bone marrow to save my life. We were not a perfect match, but close enough. This complete stranger was the only person out of thousands of people on all of the registries who could, through the selfless act of donating, save my life. I'm one of the lucky ones. There are so many in need of a bone marrow transplant who have no viable matches.

A year later, I learned this stranger's name: Dana. A short while later, I received an email from her. I was surprised to learn that we are the same age.

Today, I marvel that I am able to sit in my home and enjoy most of the same activities I loved before the dark days of diagnosis and treatment. The small number of friends that I've made at school have no idea that I spent the better parts of 2007-2009 bald due to chemo. Today, I get to be myself. No awkward silences or difficult questions.

Today, I get to marvel at the novelty of being normal thanks to a beautifully selfless soul who took the time to register as a bone marrow donor.

Today, I get to thank her one more time.

Thank you, Dana.

Back to School

Classes resumed on Monday and so I am that much closer to a degree. Financial aid is still up in the air and the gremlins that generate that entity's electronic correspondence are doing their best to bring on a nervous breakdown. GvHD of the skin and scalp have ramped up since I'm regularly in the sun on a daily basis now. As for everything else, there's been little change.

A little GvHD

Yesterday, I noticed that my face was covered in a faint GvHD rash. It happens when I've been exposed to too much sun or heat most of the time. I don't think I can blame the sun for this latest episode, though.

The rash quietly emerged about an hour after I got off the phone with a harried counselor who worked in the financial aid department. Classes start in little more than a week and so these poor counselors are under attack by frantic individuals wanting to know where their money is. I realized this before I picked the phone up. I didn't want to make the call, but the tiny OCD bureaucrat that hides in a tiny compartment of my brain was insisting that I do due diligence. It's been a week since I sent in my appeals package. I wanted to be sure that the powers that be had received it.

I spent 43 minutes on hold waiting to speak to a human being. I was told that my case was still being processed and that the office was receiving such an enormous volume of correspondence that there was no way that the counselor with whom I was speaking could tell me if my paperwork had been received. Instead of insisting that she drop everything and spend the rest of her morning finalizing my case, I thanked her for her time and let her get back to work.

And I told myself that I wasn't stressed and got back to doing whatever it is I do on any given day.

Then the rash made its debut. I applied prescribed unguents and thought no more of it.

This morning, I awoke to a screaming rash on the entirety of my face that reaches back onto my scalp. It stops somewhere behind my crown and on a scale of 1 to 10 it is a constant 5 as far as itchiness is concerned.

Since I know stress over my financial aid situation has been the genesis of this latest round of skin GvHD, I plan on doing incredibly mindless things this weekend in an effort to counteract it. I have topical prescriptions that will help with the rashes and itching, but until I chill out, they won't go away entirely. I've been down this road a few times. If you need me, I'll be on the couch surrounded by diet-blowing snacks. I might even share if you ask nicely.

Norming

Little by little, I'm learning that I'm no longer programmed to deal with the regular stresses that confront people every day. Throw some medical drama my way and I flip over to automatic and cruise on through it. I've been handling extraordinary medical situations for too long.

The only drama I'm currently facing is of the generic variety. My financial aid package is in limbo.

I have seven classes left to take at LSU. Five of them are to complete my degree in Construction Management. Two of the classes round out a minor in Business. I'm currently working on two of theses courses via the distance learning program.

What I'm hoping to remember as my last fall semester begins in less than 2 weeks and my status is in a bit of limbo since my financial aid package is under review. Last year, I wasn't able to complete enough hours to satisfy aid requirements. I was only able to complete six hours each semester thanks to GvHD of the liver and lungs. If I'm going to be honest about it, I shouldn't have been able to finish that many. Sheer stubbornness on my part and the understanding of some amazing professors got me through.

And so now I wait. I put my appeal package in the mail yesterday. I will resist the urge to call the poor beleagured employees of the department of financial aid every twenty minutes. I will continue to work on my independent study lessons. I will systematically chew off every one of my finger nails. I will stress out over this very mundane thing that I know will be resolved and all the while, I will not be thinking about cancer. I suppose it's the small victories that matter most.

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.