Being One for the Records

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great? I didn't have much of a choice this week. I received some not so great news on Thursday when I had a PET/CT scan at Johns Hopkins. I learned that I have a new tumor in my right lung. I was surprised and disappointed, but as I've been telling people, one new tumor is better than twelve. I know this sounds strange, but in the grand scheme of things, one metastatic lung tumor, for me, is not really that big of a deal. I know what it is and what to do.

As you may remember (it seems so long ago), 10 tumors were discovered in my lungs in October of 2006. Three were removed surgically, and when the pathology confirmed metastatic disease from Adenoid Cystic Carcinoma of the Breast (ACCB) --  the first cancer diagnoses in 2000 -- the remaining seven were killed with radiofrequency ablation (RFA) at Johns Hopkins in Baltimore by Dr. Georgiades.  (See November 2008 posts.)

When I got my first negative PET/CT report showing "no detectable cancer" in September 2009, you may also remember that I threw myself a Negative PET Scan Party in October to celebrate. Two days after the party I became very ill and drove myself to the ER. The next morning I was told that I had an aggressive form of leukemia (AML) and was given a very grim prognosis. And the games began for cancer #2.  (See 10/22/09 post, Nothing Like a Good Party Before a Storm.)

When Dr. Georgiades showed me an image of the tumor from the scan on Thursday, I asked him why this happened. It was a stupid question. He could have said, "because it's cancer, dummy." But he knew what I meant. If cancer were to show up again, I thought it would be the 2 or 3 little tiny spots that he calls ditzels that we've been watching for the past 3 years and are too small to ablate. Where did this new one come from? He suspects that if I had a cancer seed, which otherwise may have just sat there forever, that seed may have grown into a tumor because I trashed my immune system. It popped up before my new immune system kicked in. It makes sense given the last 1 1/2 years (minus the 5 months I was in remission before the relapse) of being treated with an alarming amount of toxic medicines and chemotherapy, the last of which destroyed my bone marrow permanently.

Here's the positive spin on this new tumor situation: When I asked about the ditzels, Dr. Georgiades told me that they've actually gotten smaller. If I grew a new lung tumor, wouldn't you think that a weak immune system would have allowed the ditzels to grow too? Maybe that means that the ditzels aren't cancer after all. As I've said before, we all have spots on our lungs because our world has become filthy and our lungs are filters, like sponges. A lot of different kinds of junk gets stored up in a sponge over time. Only the spots that light up on a PET scan and grow over time are likely to be cancer.

Plus, I only have one tumor. If I had lots of dormant seeds it stands to reason, like the ditzels, that they would have grown too. Yes, I was pretty bummed out driving home from Baltimore. But mainly, I was upset about having to go through another procedure to deal with cancer, especially now. But knowing what's going on is better than not knowing what's going on. And the tumor isn't going away. Let's just kill the killer and get on with it.

Needing to exert as much control as possible, I called one of Dr. Gerogiades' nurses from the hospital lobby and tentatively scheduled the RFA for June 15th. It's a same day procedure, which I've had four times before, so I don't expect much drama. I'll stay with my cousin, Karen, who graciously puts me up every time I make the trek to Hopkins. A week after the RFA I probably won't have a single physical sign that anything was done -- not even a band-aid at the site. It's a pretty amazing procedure (see 11/2/08 post, Radiofrequency Ablation - RFA).  Anyone new to this blog who is curious about this 10 minute treatment can click here to watch a short video, filmed for the documentary that led me to Dr. Georgiades in the first place.

After all my pre-transplant tests were completed last October, I met with Dr. Rowley, my transplant doctor. He said, "the only thing I'm slightly concerned about is the cancer that was found to have spread to your lungs." "Oh, that" I said, dismissing him with a wave of my hand. "That's completely under control. It grows very slowly, can remain dormant for decades, and everything that's been identified as cancer has been killed. Because ACCB is so rare, you won't find much about it. It only occurs in <.1% of all breast cancer patients and of those it metastasizes in about 6% of the cases. There's only a few of us, maybe a couple of dozen at most since the 1940s." "Yes," he said. "And of those few, how many have had transplants?" "Oh, right. Probably none," I realized, feeling again, like the only one on the planet with my ridiculously rare medical circumstances.  Oh wait.  I probably am the only one on the planet....

Several people have suggested that I write a book.  Who would believe it?  I have a hard time believing it myself.  Being "one for the records" can be a scary thing.  But at a certain point, it also becomes humorous -- one of those "oh, paleez" situations.  I'm determined to win this prolonged battle and use my unique misfortune to contribute somehow to the landscape of knowledge on two very different diseases.  But before I can do that, I need to get off this rickety and dangerous roller coaster once and for all.  On June 15th, I'll be one step closer.

Kathy
CANcer + HEALth = CAN HEAL