Friday, November 30, 2012

Quick update

Chris and I met with genetic counselors Thursday who are attempting to deconstruct my family's medical history and decipher how it relates to my present situation. They're attempting to rule out any undiagnosed syndromes that may have made me more susceptible to squamous cell carcinoma post transplant. This is all in order to better tailor my future treatment.

As they interviewed me, they drew my family tree, extending out to my parents' parents, mom's and dad's siblings and half-siblings, and noted which people related to me also had cancer. Out of those many people, I could only confirm that my dad and I had had cancer. There was a gray area concerning my older brother who died in infancy. My parents wouldn't talk about it, so I only know that he died before he was a year old and that it had something to do with a blood disorder.

After nearly 2 hours of talking, they determined that my cancer is largely environmentally driven and not genetic. This is good news for my brother and nephew.

On a side note, environmentally driven does not mean that the nanny parked me next to a toxic waste dump when I was a tot. It means that my cancers are likely derived from a host of environmental factors that I've been exposed to or exposed myself to. It doesn't mean that they can pinpoint the exact cause of the leukemia or squamous cell cancer, only speculate.

The counselors discussed getting a DNA sample from me so that they could have it analyzed to better customize my treatment. The problem is that I've had a cord blood transplant and a bone marrow transplant. Any blood pulled from me would not actually be representative of me. It would actually be that of my donors. The only way to get my original DNA is to do a skin punch biopsy. Freaky, right? They plan on discussing it with my team of doctors and making a decision next week.

I had a host of tests done today including chest x-rays, an EKG, and a CT scan. I met with the internal medicine doctor whose job was to decide whether I was fit for surgery. He peppered me with what seemed like a thousand questions. When he wasn't satisfied with my answers, he grilled Chris. He listened to my heart and lungs. I have Graft versus Host Disease of the lungs, so theres a lot of scar tissue in my poor lobes. I managed to squeak by and he gave me the green light to proceed.

He also informed me that my thyroid is misbehaving again. I'll have to get it rechecked and then probably have to double my synthroid dose again.

Monday, I'll meet with my transplant team and have more tests done. I'll probably post something Monday night.

Saturday, November 24, 2012

An answer for Jenna

Jenna asked if I could elaborate on what could have caused the secondary cancer I'm now facing. I'll do the best I can to answer using what I've been told over the last 5 years of post-transplant follow-ups. Please keep in mind that I have no medical training.

After a bone marrow transplant, survivors are placed on a drug regimen to keep their new immune systems in check. The transplant recipient's organs are in danger of being attacked by the new immune system, when this occurs it's called Graft versus Host disease. It can be a very mild event manifesting in a persistent rash, or it can be life threatening and affect the lungs or liver. I've been on both ends of the spectrum and have suffered from GvHD of the eyes, skin, scalp, liver, lungs, and mouth.

I take tacrolimus, an immunosuppressant, which hobbles my donor's overactive immune system. It's meant to keep my organs safe. Mostly, it works, but when my liver and lungs were under attack, I needed high-dose steroids. Prolonged use of tacrolimus can lead to a host of problems which include secondary cancers. Prolonged use of any medication can lead to problems down the road.

Squamous cell carcinoma is the most common secondary cancer that afflicts bone marrow transplant survivors. As I understand it, the cancer usually manifests on the skin, usually on the face.

Here's where things get shady. Just because you have had a transplant and have taken an immunosuppressant doesn't guarantee that you will develop a secondary cancer.

The presence of Graft versus Host disease of the skin or mouth has been linked to an increased chance of developing skin or oral cancer. I've suffered from both since the first transplant. It comes and it goes with no warning. I've been seeing a dermatologist who specialized in GvHD of the skin. She checks me once a year for skin cancer.

I'm a little over 4 years out from the second transplant. The GvHD affecting the tissues of my mouth has been fairly persistent and is one of the reasons I suspect my transplant doctor of adding the head and neck oncologist to my stable of specialists. It's an if then maybe proposition.

There's no clear-cut reason for why this happened, just a jumble of incidences that added up to a bonus cancer.


Tuesday, November 13, 2012

Where to begin?

One would think that after over five years of experience in dealing with the many different ways that cancer can turn a person inside out and upside down, that one would become something of a connoisseur of the absurd.  One would be very wrong.

Two weeks ago I realized that the leukoplakia on my tongue was growing. To my alarmed mind the spot looked like it had doubled in size overnight. I called my head/neck oncologist at MDA and reported my concerns. She had me come to Houston the following Tuesday for a look. Easy enough.

A naval doctor pursuing a fellowship in oncology was the first to see me. He pulled my tongue this way and that, felt my lymph nodes, and took down my history. He looked at the pictures of the leukoplakia from six weeks earlier and declared that the spot looked the same.

Dr. G. came in and did an inspection and declared that the spot looked the same.

Are you all sensing the absurdity yet?

Since the spot had not had the good grace to disappear benignly, Dr. G. elected to biopsy it. A piece roughly the size of a pencil eraser* was removed and I was instructed not to eat anything salty, spicy, or crunchy for the next several days.

*The naval doctor showed this very lucky girl the actual specimen after it was taken.

It's been exactly one week and I finally got the call. The spot that looked like nothing to be worried about is squamous cell carcinoma. I have oral cancer.

I will have a CT scan of my head and neck during the first week of December to determine whether the cancer is lurking anywhere else. I'm also scheduled to have exploratory surgery on 12/5. This will involve an endoscopy, further tissue removal from the original site, and possible neck dissection if lymph node involvement is found.

Dear readers, you now know all that I know about the entire absurd affair.

I feel well. I do not feel like I have cancer. Beyond that are feelings of anger and disappointment, which I'm not quite ready to write about. Once I've had a few more days to process, you can rest assured that I'll be back and in rare form.