Thursday, March 26, 2009

Mile 2 of my Cancer Marathon

The first mile of the marathon is chaotic with a crush of people weaving in and out trying to find a good position to run in. There’s apprehension about the enormity of the task ahead. And there’s a lot of self-doubt – did my training prepare me well enough? Will my body be able to handle 26.2 miles? Do I have the mental strength to stay focused the entire time?

During the second mile, things start to settle down. You find your lane to run in and immediately that’s one less worry. The pace is still uncomfortable but you know your training is strong and in a few short miles the pace will become familiar. The miles ahead still feel daunting but instead of apprehension you feel reverence for what you are about to do. It’s not every day that you run a marathon and you are determined to soak up the experience.

And so begins mile 2 of my cancer marathon…

I met my oncologist on Monday, March 16. He seemed like he knew what he was doing and did not appear to have obtained his medical degree online. So that was all good. Dr. Smith lined me up with a whole host of appointments including a bone marrow biopsy, blood tests, PET scan, CT scan, echocardiogram and a consult with an orthopedic doctor. He obviously thinks I have good insurance.

The bone marrow biopsy was easier than advertised. I would liken it to going to the dentist. Not pleasant but over pretty quick. The biggest difference is that you don’t get a free toothbrush and mini tube of toothpaste to take home.

The PET and CT were easy except for the nasty tracer solution they make you drink. It did a number on my stomach. My blood tests came back completely normal (did I mention my family jokes that I am the healthiest cancer patient in America?)

I was pretty apprehensive about the orthopedic visit. I’ve been an athlete since I was a little girl and it’s become part of who I am. Additionally, we are a pretty active family and we love to take the boys for hikes, bike rides, family runs, etc. I’ve been petrified that my life, and the life of my family, would be drastically different because of this cancer. I could accept limited mobility at 80, but not at 30.

Needless to say, I was beyond ecstatic when the orthopedist said that I would more than likely be able to run again once everything is over. It was like I was given part of my life back. The warm glow of this victory made up for the fact he wants me on crutches another 6-8 weeks. (If I were to break my leg now, the cancer could spread rapidly which is obviously a bad thing) I also have to go to physical therapy to get my range of motion back from the bone biopsy surgery.

At this point I should mention that everyone I have encountered at the Cleveland Clinic has been awesome from the doctors to the nurses to the valets who park your car. They treat everyone like a Rockstar. Speaking of which, did you see that Robin Williams is being treated at the Clinic currently? I looked for him but no luck.

The facilities are amazing too. The lobby of the Taussing Cancer Center looks like a 4 star hotel, complete with grand piano and free cappuccinos. Clevelanders have a lot to complain about – the weather, the economy, the river catching fire – but we are truly blessed with fine hospitals such as the Clinic and University Hospitals. In fact my only complaint thus far about the Clinic is that they block Facebook access on the free wireless network :)

I saw my oncologist again today. All my test results came back completely normal with the exception of the cancer in my femur bone. Because of this, he determined the prognosis to be Primary Bone Lymphoma.

Primary Bone Lymphoma is a rare form of Non-Hodgkin’s Lymphoma. To give you an idea of how uncommon it is, the incidence rate of lymphoma is 1 in 4,466. Of those about 80 % are Non-Hodgkin’s Lymphoma. Of those, only 1-2% are Primary Bone Lymphomas (PBL). Normally lymphomas start in the lymph nodes. PBL starts in the bone.

Despite its obscurity, PBL is very treatable. According to “Lymphoma of bone has the best prognosis of all primary malignant bone tumors.“ (Who would have thought there was a website dedicated to bone tumors? Ah, the powers of Google)Here are some links to info about PBL:

My treatment will be 3 rounds of chemo 3 weeks apart followed by radiation. For my medical and scientist friends, I will be on R-CHOP. Today was my first treatment which I well detail soon.

As far as I am concerned, I won the cancer lottery. Sure, chemo and radiation will suck but it’s a small price to pay. It could be a lot worse so I am very happy about the diagnosis.

It’s funny how your idea of what’s “good” changes. Before this all started, I thought having any cancer would be awful. When we thought I had osteosarcoma, or something like that, I was happy that it was a localized cancer and not spread from a cancer elsewhere such as the brain. When I found out I had Non-Hodgkin’s Lymphoma, I was happy that it wasn’t osteosarcoma because the treatment for that can be pretty nasty. And now that I found out I have PBL, I am happy because that has a better prognosis than regular Non-Hodgkin’s Lymphoma. For my running friends, I guess you could equate this with “A”, “B” and “C” goals.

So this is where I am. I know what’s in store for me now. I’m not totally comfortable with it yet but I know I can do it. Writing my story down, and sharing it with all of you, has helped me capture and organize my thoughts and I thank all of you for all your cheers from the sidelines. Mile marker 3 is coming soon…

1 comment:

Sarah said...

Your humor, pluck, outlook, and writing talent are all dazzling to me. I'll send you some karmic energy when I do my track workout in the morning. I'll try to channel some of your speed!