Wednesday, April 7, 2010

Scary news in the night

About a week ago, I received my donor's name and contact information. Previously I knew only that she was a woman. We could correspond, but our letters were censored.

I stuck the slip of paper on the fridge and kind of circled it for a few days. I liked looking at it and imagining what this person, who was now part of me, would be like. I would write soon. She beat me to it. I don't want to violate her privacy by saying her name. Let's just say she is a woman about my age who lives in New Jersey.

Naturally I feel grateful towards her. I wanted to hear more about this generous woman. What she had to say made me almost fall out of my chair. Actually it sent me straight to the Ativan. Turns out she hadn't known when she donated that she had breast cancer. But she found out shortly afterward that she had it then and she has it now. It hasn't spread to her lymph nodes, and her prognosis is good. She said her doctors said she probably hadn't hurt me. They passed the info to her local transplant center, but I don't think it made it any further.

She's currently undergoing treatment and is doing well.

WHAT? Rational Ronni, who was far away at the moment, might have signed off with a "glass half full" sceniaro. Now the other me...First let me not beat myself up too much, because, hearing this for the first time, most other people would be very distressed. I went right into catastrophe mode: how ironic, how sad that I could get another disease from the transplant and get sick and maybe die from it. The tears began to fall. I wrote Dr. Alyea and Melissa and went to bed.

In the morning, Dr. Alyea's e-mail awaited me. He said he had no concern that my donor's health problems would affect me, and that he wished her well.

Phew. I hope to be in touch with my donor again and think of ways that I might be able to help her now. None of this, of course, was her fault, but she sounded guilty and scared. Actually, that's how I felt too: guilty about looking at it all from my point of view, and scared about how it would impact me. Oy! Stop!

I felt perkier as the day went by. After school, Katie went for a run. Standing outside in the sun, I decided to do the same thing. So I "jogged" down the street and back. A friend driving past me pulled in the driveway, got out and congratulated me. Did I look like I was really running? I asked. Yes! she said. Yay!

Gotta take the dog out and maybe throw in a small jog, maybe not, depending on how I feel. The sun is shining, and life goes on.


Trish said...

well, crap. the good news is, the cells for breast cancer aren't like HIV and so easily passed on. pretty guaranteed if it'd been HIV you'd have something to worry about.

trust in your doc, keep getting tested and boob exams and don't panic. repeat, don't panic.

once you can breathe, I would talk to the transplant center and ask why this info didn't get passed along at least to your doctor, let alone you. while the risk may be small, the possibility is there and you should have found this out from them or your doc, NOT from the donor letter. Am sure the center and docs are worried about liability...but c'mon folks!

and---to remind you of what my doc said when I was Dx with a secondary leukemia after my initial treatment was done---you've beaten cancer up pretty good the first time, what makes you think you can't do it again?

and he was right.

susiegb said...

Goodness, what a fright! I would have been just like you I'm sure Ronnie! But what a nice reply from your doctor. That probably calmed you right down ... :)

PJ said...

You probably have the same chance of developing breast cancer as any woman your age does. Keep current on your mammograms. I've been waiting to have one until I was out of the leukemia woods. I plan to schedule one today.

Ann said...

I won't lie, my heart skipped a beat when I read the title. It sounds like you have a handle on the situation, so I'm not going to worry. Keep moving forward and doing what you're doing.

Meryl said...


I have to agree with Trish that you need to talk to the transplant center- you wouldn't want another person to go through this! I think Dana Farber also has to know the craziness of your experience so they are also alert to never letting this happen again. I hope by today you are starting to let this experience go or at least write it up for your book and then file it away forever. So sorry you had to go through this. Love,

Diane said...

I agree with these comments and have a few to share.

Separate the anger from the process of how this was handled - the transplant center and DFCI should have told you directly, etc., from the reality of the issue itself. As to the latter, trust what your doctors are telling you. You can't get any more cynical than David and he even said that all along, your docs have been very honest with you about things. Remember all of the times they have said, "We have to watch this... I want another test... this concerns me..." WELL THEN, if he says not to worry about this, then let it go. Of course it's understandable that you might panic - I'm surprised you were even able to go to sleep without paging your doctor - but now it's time to get back to tennis and yoga and all of the other things you are doing to re-build yourself.

Unknown said...

Sorry you had to deal with such a scare (pretty normal reaction) but trust in what your Doc said.

All the best to you & your donor.

Unknown said...

Dearest Runder-Woman,

Phew! felt as if i had the wind knocked out of me when i read the first lines...remembered when that literally happened when i fell out of a tree when i was a child...and to read that at night...

Know that you are fine, and will be so, and as always, listen to Dr. Alyea, All-Yes-to-Your-Health and healing...xop

Trish said...

I've actually been in a similar situation. More than 5 years ago, I was Dx with melanoma. Except, my doc didn't like what he saw on my face vs what he got on the biopsy report...Stage IV and he was thinking more like Stage 0/1. Sent me off to a university nearby who did their own lab work. Turns out, despite the checks and balances, somehow, my sample had been mixed up with someone else's & I had an ugly spot on my head, but no melanoma (well, not yet). I was relieved I was no longer Stage IV, but I was almost physically ill knowing someone else had THOUGHT they were clear, and then wasn't. Lawsuits abounded and I heard that my old doc and the lab had some major legal issues because of this minor mixup (on my end, it was minor). A few years later I *was* Dx with melanoma and because of the mixup, I had the university doc to talk to when I had a bump on my back I was worried about and hence, have since been the only one in the family to survive melanoma.

Mixups happen. Full testing can miss things. Your life was saved by the match. Run with that as long as you can and get those jugs looked at. Breathe m'dear. Breathe.