Biopsy results

The biopsy results from my last visit to the dermatologist at MD Anderson have come in and it was nothing to be concerned about.  Just a little cyst.  Nothing predatory or cancer-like.

I am swamped with midterms, so things will be quiet on the blog until after 10/20.

Sharing the mystery

I was in Houston for 2 days last week and have been loathe to write about it.  Before you become alarmed, it's not for the reasons that might have immediately occurred to you.  In fact, my transplant doctor pronounced me perfectly normal.  My blood work was as close to normal as can be expected for a two time transplant survivor.  My liver is behaving.

Dr. K. took me off of the anti-fungal, anti-viral, and the antibiotic I took 3 times a week to help guard me against possibly developing pneumonia.  These 3 medications were a sort of insurance policy while I took an immunosuppressant.  I still take tacrolimus (immunosuppressant).  Dr. K. wants to wean me off of everything.

The anti-viral medication that I was on magnified my body's ability to absorb tacrolimus.  This means that now that I'm off of it, the same 1 mg dose of tacrolimus that I still take isn't as effective.  After a week of lower levels, I'm starting to feel the effects of an immune system coming off the leash.  My skin constantly feels like ants are trying to escape from the inside.  There's a constant stinging itch that moves around.  Patches of skin have become extremely dry and flaky.  My face looks as though I've allowed a thin layer of white glue to dry upon it.  My cheeks and forehead are crinkly and puckered.  The skin just under my eyes is peeling.  Nothing helps.  It itches and burns.

My latest pulmonary function test showed that I've had an improvement of 1% over the results from 6 months ago.  GvHD of the lungs is very slow to heal.  It's likely that I will be recovering from it for years to come.  I'm at a little over 70% of lung capacity.  Heat and high humidity make breathing difficult.  Smoke and air pollutants leave me a little breathless.  To give you a better reference point, I occasionally pass within a hundred yards of a small food service outpost on my way to class.  On the days that they serve barbecue and smoked sausage I start to wheeze.  That small bit of smoke in the air gives me hell.  Try to imagine walking behind a smoker.

I saw my dermatologist while I was at MDA because I was worried about a small plaque of skin that had popped up on my left forearm.  It wasn't like any GvHD that I'd ever experienced.  It was a small, flat raised dot of skin.  Extended use of immunosuppressants increases the incidence of skin cancer.  It's one of the things my team constantly checks me for.  I was concerned.  As it happens, I was worried for no good reason.

It was a wart.  I haven't had a wart since I was a child.  Dr. H. froze it off and that was the end of it.  She also took a skin punch biopsy from my right buttock.  I've been walking around with a stitch on my ass.  I don't expect the results to amount to much of anything.  Dr. H. didn't think I had anything to worry about.  I should get the results in another week.

And now I'll talk about the thing that's made me loathe to do much of anything for the last week.  I don't know if many of you will remember the great mystery diagnosis I was l being so secretive about earlier in the year.

The THING.

I've been seeing a reproductive endocrinologist as MDA for the last 2 years.  He put me on hormone replacement therapy because my natural hormone levels indicated that I was fully menopausal.  It was expected.  Only 1-3% of transplant patients are genuinely able to retain fertility.  After the first transplant, it looked like I would be one of the lucky few.  I was able to menstruate, etc.

I wasn't so lucky after the second transplant.  If I'm going to be absolutely honest about it, the fact broke my heart.  I mourned the fact quietly and came to terms with it.  Chris and I started investigating options.  They all cost more than most entry-level luxury cars.

I went on with my life.  I went back to school.  I set the thought of kids aside.

In February of this year a funny thing happened.  I started menstruating again after 2 years of nothing.  I talked to my local oncologist who told me that it happens.  I talked to my transplant doctor and she put in orders for me to see a specialist at MDA.  A month passed, and then another.  The periods got longer each time.  In May, the bleeding became continuous.  I became alarmed and pushed my transplant team on it.  They got me in to see the gynecologist that works with transplant patients.

She wondered why I was on hormone replacement therapy.  She told me what was happening wasn't unusual.  She'd seen it happen before.  She suspected that my reproductive organs had been quietly repairing themselves after so much chemotherapy.  She suspected that I was still fertile.

I didn't want to say anything.  I didn't want to hope.  I didn't want other people to get excited about the possibility, because I didn't want to believe it.  To believe that this could be possible opened me up to the possibility of having to grieve all over again.  I'd done that and I refused to go through it again.  And so I refused to believe it.

That didn't stop some small part of me from hoping.

Dr. R. ran tests.  I had a vaginal ultrasound to check out the equipment so to speak.  My blood work came back as inconclusive.  Dr. R. told me to stop taking hormones.  She scheduled me to return to MDA 2 weeks later for more tests.  They were also inconclusive.  Dr. R. scheduled more tests to take place a few months later.

I started to hope a little harder.  It became harder to keep myself from believing that maybe she was right.

I saw Dr. R. last week for those tests.  They were conclusive.  I am not fertile.  Technically, you have to go 1 year without menstruating before you can officially be declared menopausal.  Dr. R. put me on a different regimen of hormone replacement therapy.  It's a lower dose and different combination than the one I was previously on.

It was the original HRT that had caused the menstruation.

Now I'm working on accepting infertility all over again.  It's harder this time.  I don't want to talk about it.  I want to hide under the covers and cry my eyes out.  I didn't want to do much of anything last week.  I'll get over it.  I know I will.  Thankfully, I have sweet friends like Diana who understands the heartache.  She's held my hand through emails and Twitter.  I have very dear old friends like Heather who makes a point of calling me multiple times during the week.  She talks to me about the little things that happen on any given day and she listens to me complaining about school.  They don't push, they don't bring it up, and they don't tell me what I need to do to get over it.  They let me bring it up when I need to and they listen without pushing advice or opinions on me unless I ask for it.  I am grateful.

I don't think that I'll write about this topic again.  I won't close the door on the possibility, but right now I don't believe that I have any new insight to offer.  If you're a transplant patient or survivor in a similar predicament and have questions, feel free to email me.  I'll try to answer them as best I can.

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.