Tuesday, February 1, 2011

Second birthday takes me back

Yesterday marked my two-year post-transplant anniversary, my new second birthday, or, as some people call it, my re-birthday.

Out of superstition, I didn't want to write about it until the day actually came. Having had four transplants, it was actually my second re-birthday for the second time, and I didn't want to jinx it.

I happened to have an appointment at Dana-Farber yesterday. I met with wonderful Mary Lou Hackett, my social worker, and we talked about how complicated these cancer anniversaries are. You celebrate the progress you've made while looking back at how you got here in the first place.

It reminds me that I already hit two years once and then relapsed a year and a half after that. The first time, you are so much more innocent. We went over what I already know, that the first transplant, an autologous transplant using my own stem cells to rejuvenate my depleted bone marrow after a round of intense chemotherapy, was not protective against recurrence like my last transplant, an allogenic one using donated stem cells.

So this is a whole new ball game, with Denise to thank.

Two years is big, the point at which the leukemia is unlikely to return. I know that, and I am happy and relieved. I celebrated with dinner at Margaret's Sunday night and dinner out with Diane last night. My children each called and wished me a happy birthday.

My counts were good at yesterday's appointment, with my white count, 8, continuing to be normal and my hematocrit, 39.9, well into the normal range, a relatively new phenomenon. My platelets were up a little, from 35 to 54, still low, obviously (normal is 155-410), but not of apparent concern.

Dr. Alyea said I could go off the Prograf, which might help my platelets. For now I'm staying on 15 mg. of prednisone because my liver is about the same.

My birthday "presents" were three booster shots given at two years.

The occasion stirred up memories of the nightmarish days after the transplant: the coma that I went into two years ago Feb. 14, and the night about a week later when Dr. Alyea called a family meeting in which the topic of my possible demise was raised.

Of course I don't remember any of it. Diane re-told it to me today, and each time I hear it, I pick up details that I didn't know (or that I heard and forgot.) "That's an intense story!" I said before returning to my mile-high cold cut sandwich. My heart is a little lighter now, which is why I can hear the story without getting freaked out.

I am staying in Newton at least through Wednesday. Boston is supposed to get another 20 inches of snow. I was going to stay anyway to see Katie's a cappella concert tomorrow night at Brandeis; it just got canceled, but I am snowbound until Thursday morning at least.

My "celebration" continued this afternoon with a visit to the dermatologist to see what can be done about the pre-cancerous spots on my face that have not responded to freezing.

She suggested we try photo therapy, an approximately two-hour procedure. She had cancelations and said she could do it right then; I was a little surprised but went along with it.

She applied some cream to help bring out the areas of concern. Then a medical assistant wrapped my face in saran wrap covered with aluminum foil, and left me to sit for about an hour and a half. (At right, my two-year-old self thought it would be really funny to post a picture of me all covered in foil.)

The photo therapy part takes 14 minutes. The light creates an intensely painful burning sensation that is only slightly alleviated by an instrument blowing cold air. It's about five hours later, and my face still burns. Oh well, by the morning it should be better, although I might be swollen. Worse things have happened.

Diane and I went to a wonderful yoga class this morning. I am getting much stronger and can do standing poses without teetering, although it still takes a lot of effort to maintain my balance. When the teacher said to take a moment to appreciate all that our bodies have done for us, I looked back at the past two years and said it more fervently than usual. "Thank you body, thank you," I said to myself.


susiegb said...

Yes, 'thank you body indeed'! So glad you've got this far Ronni, and so much more life to live and enjoy!

Anonymous said...

Sounds like you got insurance to pay for your cosmetic treatment.

Unknown said...

Hooray!! Been holding my breath waiting for this post. So happy for all this good news!

donna said...

I feel kind of weepy reading this post. I will never forget how sick you were two years ago and that you might not make it that day when Deb and I visited you in the hospital. I don't know if you even knew we were there. And look at you now! Incredible! I'm so happy for you! You go girl! P.S. Cute picture!

Ann said...

Happy Birthday! I love that you posted the aluminum foil picture. Stay warm and out of that crazy snow.

Ronni Gordon said...

I am responding to the comment by anonymous who didn't have the guts to leave his or her name. I asked the doctor if anyone endures this painful treatment for cosmetic reasons, and she said no, they only do it for cancer or pre-cancerous spots. So would you rather have insurance not pay for the procedure now and then pay much much more later if the spots had stayed and turned into cancer?

cindy fissel said...

Ronni-Congratulations on this wonderful milestone! Have been following your beautifully written blog for some time (thanks to Pam) and sending healing wishes.

Anonymous said...

Coming from one who has had all kinds of cancerous and pre-cancerous treatments to their face, legs, back, chest, etc. and who has had to endure, scraping, freezing, burning, mose surgery and the like (all irritating and somewhat painful...but not the worst ordeal in the world), I can suggest a "treatment" for "Anonymous" who thinks people like us were getting a freebie facial...it's called a "lead treatment" -- and yes it's quite toxic, especially when multiple rounds of 9mm amunition go whizzing through your body -- and no I don't think his/her medical insurance will cover the damage, but maybe his/her policy might cover funeral expenses...if not, I'll be happy to chip in.

Meryl said...

Congratulations on your second birthday. Like Donna, I got a little weepy reading the post. They were tears of happiness, knowing that you are around to appreciate your wonderful kids, the fun things to do in the Valley, the foibles of life etc, etc. I'm so glad you're here and living brilliantly. Shine on sister.

Jim said...

Two years and counting! Happy birthday, RG!

PJ said...

Your second birthday takes us all back. I'll never forget visiting you in the hospital just after you'd had dialysis. You were in bad shape, but you still had your sense of humor. Onward, my friend.

Anonymous said...

Happy Re-Birthday! Resilient-Runder-Woman!


i cannot think of a more joyful occasion!