The Waiting, the Wondering, and The Water

As I mentioned in my first post, I’ve done a lot of waiting--waiting for appointments, test results, interpretations of test results, insurance approvals, scheduling of scans, and so on.  This is the kind of waiting that keeps you up at night. As a well-practiced insomniac, however, being up at all hours of the night is not new to me.  What is new is all of the wondering.

In weeks I was waiting for my CT scan approval, I spent countless hours wondering if I have ovarian cancer.  I certainly had symptoms pointing in that direction and I had watched that silent-killer take my friend Jenny in just over a year.  I wondered if I inherited any of the many cancers that my grandparents and my mom died from.  I wondered if this thing in my belly would eat me alive before anyone can diagnose me. On days when the pain went away, I even wondered if maybe this is all in my head and nothing is wrong with me.  Over the past month, I did a lot of research based on my various lab and test results and compared different scenarios. At times, when I’d self-diagnosed with an illness with poor prognosis, I wondered if I should even attempt treatment. They say that all cancer patients go through this, and researching things on the internet is a bad idea, but that didn’t stop me. I have enough medical knowledge to understand most of the articles and research papers I was reading and felt comfortable going down those rabbit holes and freaking myself out.  I mean, what else was I going to do at 3am?

People have suggested meditation, walks in nature, or just going about your regular daily routine as a way of reducing the stress of all of this, but what I’ve found the most helpful is dedicating a few days to stepping away from my usual surroundings, indulging in a healthy dose of denial, and being near water. I am very fortunate to live in a small bucolic village at the foothills of the Blue Ridge Mountains filled with friends and community-minded neighbors. My friend Mary, a cancer-survivor herself, calls our little shire Paradise and often says that she “died and went to Batesville”. In the last month, a handful of friends have joined me on these little mini-breaks in search of expansive water and peace.

In March, after my CT results revealed abdominal masses, but I still didn’t know what they were, my friends Bonnie and Sally took me to Deltaville, a small farming and sailing community about 2.5 hours east of us on the edge of the Chesapeake Bay.  We rented an Airbnb that had a little dock, visited a few friends that lived nearby and chilled out for a few days. 

A couple of weeks later, immediately after my first appointment with my oncologist, my friends Maryline, Leslie, Michelle, Kristen and Sally took me to the Outer Banks for a few days. We hung out listening to the cold howling wind blow, soaked in the hot tub, cooked great food, and enjoyed sunrises over the Atlantic Ocean (okay, not so much me) and sunsets over the Currituck Sound.

On our drive home, I got “the call” from my oncologist with a final diagnosis. It was not the one I was hoping for, nor the one my doctor had assumed it would be when he laid out my treatment plan and offered a promising clinical trial option. My genetic testing revealed that I have High Grade B-Cell Lymphoma (also referred to as Double/Triple Threat B-Cell Lymphoma). Of course, of all of the possible diagnoses, this one is the rarest, accounting for only 1-2% of all Non-Hodgkin’s Lymphoma diagnoses.  Unfortunately, this one does not respond to the standard R-CHOP treatment and disqualifies me from the clinical trial. I’ll be treated with DA-EPOCH-R starting next Thursday, April 16^th. The “DA” stands for dose-adjusting which allows them to tweak the amount of each of the drugs I’m receiving to help minimize side effects at the next treatment cycle; the “EPOCH” stands for etoposide phosphate, prednisone, oncovin, cyclophosphamide, and hydroxydaunorubicin; and, the “R” stands for rituximab. Yes, that’s a shitload of drugs and this treatment protocol requires a 96-hour continuous infusion of these drugs in the hospital at the beginning of each 21-day cycle. So, that’s 5 days in the hospital then 16 days at home. Rinse and repeat for the next 4-6 months.

I did get some good news, however. Yesterday, Sally and Leslie took me to my PET scan appointment on our way back from the beach. Our friend Patty from Batesville, who works at the imaging center, greeted us at the reception desk with a smile and gave us “VIP” seating—three chairs in the hallway outside of the waiting room (it's the little things 😉). I got the results at the end of the day and the lymphoma tumors appear to be contained within my abdomen.  They’ve grown in the last month and there are more of them than the CT revealed but they have not spread above the diaphragm or into my extremities. I’ll take that as a win.  The only outstanding uncertainty is whether it has spread to my brain. My brain MRI was moved up to this coming Wednesday, the night before my treatment starts, so we should know the answer to that in time to add any necessary cerebrospinal treatment during this first cycle.

I know! All of this is a lot, but I am trying to remain hopeful and to keep my sense of humor.  My doctor was forthright about my prognosis so I won’t sugar-coat this with you. He predicted a 60% 5-year survival rate, which is just what it sounds like. There’s a 40% chance that I won’t make it to the 5-year mark, but there’s a 60% chance that I will and may even live much longer. That’s better than a coin flip, so I feel that it’s worth trying.

I feel you all cheering me on, as evidenced by this plaque my cousin Roy and his wife Heather sent me this week (awesome quote credit: Chris G). Keep the love comin'.