Friday, September 28, 2012

This time I got to be the donor!

I've never been so glad to see the end of Summer.  This was a tough one. But, like everything in Cancer World, there were positive aspects to all the pain and stress. The lung resection on August 14th was rather brutal and my recovery is ongoing, but I was able to make a contribution to science, and that was important to me. The Adenoid Cystic Carcinoma Research Foundation (ACCRF) works with the University of Virginia in Charlottesville to conduct research on ACC. They have a tumor donation program, and I arranged with Hackensack Hospital to have them send my tumors to U of V for research projects. Since my ACC history is so unique (I am among a few dozen cases ever recorded with my specific condition), I was excited that I could contribute something that might lead to targeted remedies or even a cure for this particular cancer.

I am alive today only because of an anonymous man somewhere in Europe who donated his stem cells to the international registry for blood related transplantation (Be The Match). If there was some way that I could donate too, I was all for it.

As for the surgery, it was very successful, but more complicated than expected.  One of the tumors was close to my heart and my chest wall, which extended the anticipated two hour surgery to closer to five. Because this "minimally invasive" procedure was more extensive, I'm still fairly sore.  It feels like my rib cage has been wrapped in a giant Ace bandage and it's on way too tight.  Six weeks post surgery and I still can't get that damned invisible bandage off!  I'm managing much better, but moving pretty slow. 

Add to this an unexpected arm injury.  To position me correctly on the OR table, the surgical team had to strap my left arm up and over my head.  Prolonged lack of blood flow and stretching beyond anything Gumby would have tolerated, landed me at physical therapy twice a week to recover the use of that arm.  This too, is still sore, but manageable and much improved.

Lastly, the palms of my hands, feet and legs started burning a few weeks ago but with little visible evidence of the cause. It's not like a sunburn, which hurts on the outside. It's an internal burning that is very similar to Graft v. Host Disease of the skin (flashback to the early months of transplant recovery). My transplant team put me on a low dose of steroids to tamp it down, but it didn't work. The current theory is that it may be a type of neuropathy or a misfiring of nerves, brought on by the trauma of the surgery. I'm leaning toward another mystery response by my new immune system, which must be very upset that I put my body through the ringer again. Last year when I had a lung resection on my right lung to remove a transplant related infection, I had all kinds of mystery problems that no one could diagnose. They eventually resolved on their own, and I'm thinking this will too. With a bum left arm and burning hands, I wasn't able to type for any length of time, which is why this post is so overdue.

With all these setbacks impeding my planned recovery, I've been out of work longer than I planned.  But I hope to remedy that soon, since things will only improve from here and I have a busy Fall ahead.  Now that both cancers are under control, I can focus on getting on with life and figuring out ways to contribute more than just tumors.

I am closely following the story of a 10 year old girl named Mya, who is fighting a war at St. Jude Children's Research Hospital in Memphis.  Last week Mya underwent her 3rd transplant and is waiting for the engraftment to take so that her unthinkable pain and complications will subside. You can read Mya's story here.  It's so easy to get wrapped up in our day-to-day worlds and look only at that which demands our immediate attention.  But we owe it to ourselves and to each other to take a step back and give thanks for what we have, never forget that there are others who are far worse off, and look for ways to make a positive impact.  Taking action to improve the human condition is as much a part of our DNA as anything that science can detect.  It's what we do.  Please take a moment and sends prayers and positive thoughts to Mya and so many others like her.



  1. Hi Kathy,

    I have a quick question about your blog. Could you email me when you get a chance?


  2. Hi Cameron,

    I'd be happy to email you, but you didn't give me an address! :) You may email me at Thanks!



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