Sunday, July 1, 2012

I did NOT see this coming.

To be fully alive, fully human, and completely awake is to be continually thrown out of the nest.” Pema Chödrön  (Thanks, Georgette, for the amazing quote.)

I must be fully alive, fully human, and completely awake all right, because in the last two weeks, I was tossed out of the nest, again. I thought I was used to crashing and burning, eating dirt, and having to triage my wounds. But you never get used to it.

On a blistering June 20th, I drove down to Baltimore to ready myself for a follow up PET/CT (a combination of two scans) with Dr. Georgiades at Johns Hopkins Hospital. After the test, Dr. G. gently informed me that there were four new "hot spots" that now need to be treated. "Hot" usually equals cancer. "We need to make a plan," he said, seeing me deflate before his eyes. "Yes, a plan," I echoed. I did not see this nest-tossing-splat-on-the-ground coming. 

Let's recap: Before the days of leukemia, you may remember that my fight was limited to a head and neck cancer that appeared in a gland in my breast in 2000 (the treatment for which gave me leukemia nine years later), called Adenoid Cystic Carcinoma of the Breast (
ACCB). Ten metastatic tumors were found in my lungs in October 2006 and after one left lung surgery and four radiofrequency ablations (RFA), they were all either removed or killed. I was back in the nest for awhile.

Fast forward to today:  We had been watching one left lung lesion that grew a little since 2008, so I scheduled another RFA for the day after my tests, just in case something sketchy appeared. With this new "hot spot" news, Dr. G. ablated one of the spots the next day, and I drove home the day after without so much as a band-aid. It was the easiest surgery ever. But because two of the remaining three are in dangerous locations, he felt RFA was too unsafe, and he wanted me to consult with my surgeon. I negotiated hard, but he stuck to his guns and used the 'ol "it's for your own safety" argument. 

Crushed, I sent my reports and images to my surgeon, Dr. Elmann, and pretty much spun out of control last week waiting for an appointment to make a new plan. Assuming this may require two surgeries, one on the left lung and one on the right, I braced myself for another medical leave from work and months of pain and crankiness.

Today, yes Sunday, I finally met with my Dr. Elmann, and he threw me a curve ball. Last summer, because my immune system had been destroyed and I couldn't fight off infections, I developed a whopping lung infection called
MAI (also MAC). Dr. Elmann removed a large mass in September (not the easiest surgery ever), but I couldn't have the super extreme oral medications that some people get because I was too weak, underweight, and my GI track was shot. Dr. Elmann now thinks these "hot spots" are a return of the MAI infection. Cancer and MAI both show up as "hot" on a PET/CT scan and they look the same. They may not be cancer at all!

Finally, a plan:  Biopsy at least two of the hot spots in the left lung to see what we're dealing with.  If the biopsy comes back as MAI, I will begin the super extreme drug regimen (with lots of possible creepy side effects) for 10-12 months with repeat CTs to make sure the spots are going away.

If the biopsy comes back as cancer, I'll have another laparoscopic surgery on the left lung to remove the spots that are in bad locations, and return to Dr. G. for an ablation on the last tricky spot in the right lung. Dr. Elmann actually thinks RFA may be the safer option (I know Dr. G. can do it!), even though it's tricky, because surgery on this lesion would mean removing an entire lobe of my right lung with a gut-me-like-a-fish procedure that I can't even bring myself to describe. That's not going to happen. Trust me on this.  Although Dr. Elmann made me wait a week for an appointment, he's the first surgeon who ever recommended surgery as a last resort. 

I doubt that Pema Chödrön had infection v. cancer in mind when she wrote about being "fully alive, fully human, and completely awake."  Now able to move beyond my imagined injuries resulting from this latest tossing from the nest, I have once again returned from the Dark Side.  The rest of 2012 may suck a little, but at least there's a good chance that these dramas will soon end and I can climb back into the nest for awhile.