Tuesday, April 19, 2011

One month off steroids

It's been one month since I stopped taking steroids and I can now fully appreciate the difference their disappearance has made. I'm not compelled to continually eat and I'm sleeping through the night. I stopped taking Lasix and Potassium supplements 3 weeks ago. I no longer need to plan my day according to my proximity to a bathroom.

I've lost a kilo (2.2 lbs) since my last check-up at MDA. This is in spite of the fact that I took a month off from the treadmill. My face is thinner. I'm able to climb stairs again. There's a unicorn in the backyard.

Okay, that last sentence isn't true, but there is a vegetable garden and everything in it is still alive. We even have one tiny grape tomato just beginning to take shape. We also have a cut worm infestation bent on destroying our efforts. It's like Green Acres on a very small scale minus Arnold the pig.

Dr. K. had a terrible cold, so she wore a mask and stayed on the other side of the exam room. She told me that my numbers look good and that I don't have to return for another 2 months. Music to my ears. I got to catch up with my APN, Bev, who cracks me up and Katie, a nurse who looked after me during transplant number 2.

In case you're interested, here are the numbers:

WBC: 10.3 (Normal)

RBC: 3.76 (Low)

Hemoglobin: 12.2 (Normal)

Platelets: 379 (Normal)

ANC: 7.5 (High due to the effect of steroids, but coming down.P

My magnesium level is still low, but acceptable. My liver counts are solidly normal. My tacrolimus level is right where the doctor likes it. She said that I might be able to go to a lower dose after my next visit. The rest of my medications remain the same.

Life is good. The cats are good. Chris is good. I can't ask for anything more.

The friends you will make

I've spent a lot of time inside my own head these last two weeks when I wasn't busy with school work. I've been thinking about a few of the contradictions you come to live with after a cancer diagnosis and how they've changed the way I connect with people. I'm unsure of how to interact with people in some social situations thanks to cancer and I'm less tolerant of particular behaviors. I can't hear some one sneeze without feeling the overwhelming need to whip out the Purell.

One of the biggest mysteries of life post cancer diagnosis for me is how I can feel more connected to people I've never met than people I know in real life. I've made plenty of virtual friends since being diagnosed in January 2007. Most are also cancer survivors. I've been able to read their blogs and correspond through emails and twitter. I regularly talk to my friend, PJ, who is stalwart in calling this phone-phobic girl.

We all share a connection through our collective experiences. Sometimes we measure our own progress against each other. Sometimes we look for what we should expect in our own journeys. And mostly, we share in the little victories that remind us we're one day further from that dark day of diagnosis.

I started following Jim and Dori late in 2007. Dori was diagnosed with AML in 2007, a few months after my diagnosis of ALL in the same year. Chris and I checked in on them regularly and we saw a lot of our own story in their writings. It's hard not to start caring about people you've never met when you peek in on their lives every week.

Dori had a matched unrelated donor transplant with a 10/10 HLA match at Vanderbilt and was getting back to living her life and raising her 2 beautiful kids. Last summer, she relapsed and suffered with one hell of a bout of GvHD. She spent 53 days in the hospital. The cancer went into remission. The extreme GvHD acted like a sort of mini-transplant.

2 weeks ago, I read the news that Dori had relapsed again. I never imagined that I would get to meet Jim and Dori since we live so far apart. When I read that they were going to MD Anderson for a second opinion on treatment options the week before I had an appointment to see my transplant doctor, I thought it might be more than a coincidence.

I got to meet Dori in the flesh yesterday while she was receiving chemotherapy. I don't know that I can adequately explain the instant sense of connection you get when you look into the eyes of a fellow survivor. You just know. You speak the same language regardless that you don't share the same disease or experience.

I looked Dori in the eye and recognized her determination and grit. She has her game face on. She's taking notes and asking questions. She's getting ready to kick cancer's ass.

I didn't get a chance to meet Jim because he was driving back from Tennessee, but I got to talk to him on the phone. He reminded me a lot of Chris and I know he's going to be Dori's biggest advocate.

MD Anderson can be a very overwhelming place, especially your first week there. I don't know if our visit helped, but I do know that I'm grateful for the opportunity to talk to another tough chick whose story I've followed for the last 4 years.

Friday, April 1, 2011

Unintended absence

I've been buried under a load of schoolwork and have had 3 tests in the last 2 weeks. It's been brutal. As far as my health is concerned, all is well. I had a check-up with my local oncologist today and he gave me a clean bill of health. My chemistries are normal. My platelets are over 400 and my white blood cell count was 9.5 k/ul. That's the high end of normal. My weight is the same as it was at my last check-up 4 weeks ago, which means that I've lost the 2 pounds I gained right before my last MDA visit. I know that's a little confusing and I apologize.

Dr. B feels that the weight will come off quickly once I hit my stride. I reminded him that it took a year to lose 24 pounds last time. We'll see.

That's all I have to report for now.