Mass Confusion

Mass: a collection of incoherent particles, parts, or objects regarded as forming one body

Confusion: lack of clearness or distinctness; bewilderment

Despite my angst, I slept last night. Melantonin, an herbal supplement that helps regulate sleep, washed down with a chaser of tears, did the trick. As I drifted off, I asked my son for guidance. "You can talk to him anytime you want," the psychic John Edward once told me, "You don't need me to do that."

He didn't come. Instead, my first boyfriend, Peter Wolff appeared. Peter is a cop in real life. We have been friends since summer camp when, as young teens, we kissed, cuddled and chased each other across a 31 acre island inhabited with thick marsh, mixed forests, and sandy beaches. Here, Peter taught me how to sail and I taught him how to dance. Together we experimented with love - mixing tears and fears with bouts of unfiltered joy.

Throughout the years and I have always respected his honesty and sensibility so his vivid, ephemeral, visionary guidance was met with open arms.

In all his wisdom and grandeur, he stood in front of me, in complete uniform, and said, "You know what to do."

Honestly, I don't. I don't want my decision to be fueled by fear. The easy way would be to have the surgery, and to know the pathology, but if I have a complete cure response from the radiation why would I do that? Especially if I believe, which I do, that surgery spreads the cancer.

The problem is that my tests do not show definitively that I have had a complete cure response - meaning the cancer is gone. The tests are leaning in that direction but it is too early to tell. The radiation needs more time to take affect. "A few" lymph nodes were detected on the MRI which could indicate the disease is spreading or it could simply be the result of inflammation from the radiation.

My PET shows no cancer but a PET won't detect positive lymph nodes because they are too small. My CEA blood count is within normal range - this is another tumor indicator for patients with colorectal cancer. My CT and MRI show some rectal wall thickening that again, could be the result of the radiation.

If I listened to Memorial Sloan Kettering, based on a chest CT that showed a few sub-cenimeter masses, too small to biopsy or light up on a PET scan, they would have treated my lungs first with 4 months of chemo before treating my wrecked-tail. So, starting chemo ASAP and giving my tail more time to respond doesn't sound illogical. But I'm flying solo. I have no clinical data to support this.

As I mentioned in my past post, there are studies that show a similar reoccurrence rate (after two years) in patients that did not have surgery vs and those that did, but this was after they received EXTERNAL radiation with chemo. The primary roll of chemo, given before surgery, is to weaken the tumor and make it more susceptible to radiation. I can't find any data on people who had INTERNAL radiation, without chemo, and opted out of surgery. It makes sense that the external radiation kills more good and bad cells than the internal radiation does, so if my lymph nodes are involved they would remain out there, on a path of search and destroy.

When I was diagnosed with stage 0 breast cancer, against my doctors advice, I listened to my gut and opted to have a double mastectomy instead of a lumpectomy, radiation and 5 years of tamoxifen (a preventative drug). My final pathology report showed more cancer in the breast tissue than was originally detected so I know I made the right decision.

This is a completely different game. This time what I hear in my mind, are passages from The Scalpel and the Soul written by Dr. Allan J. Hamilton, a Harvard-trained brain surgeon.

RULE No. 20: There's no surgery like no surgery 

Surgery remains the "court of last resort" when less invasive and less dangerous medical therapies will not work or just fail. So when should a person consent to having surgery? One of two circumstances has to be met before proceeding with an operation. First, is your life in direct and imminent danger? The second is trickier. Ask yourself: Is my lifestyle seriously threatened without surgery?

Only I can know how I want to live. And only I can know how much I'm willing to risk to live the life I want.

Your love gives me strength. 

xo, MonkeyME

for a complete list of my ridiculous cancer journey click HERE