Monthly Archives: October 2012

October 26th

I have learned that cancer has many setbacks and negative aspects associated with it. The list is quite long and at times seems to have no end. But it also possesses a couple of, shall we say,”get out of jail free cards”, otherwise known as “pulling the cancer card.” So I’m just letting everyone know thats what I’m doing right now. I know it’s been a long time since I’ve updated this blog, but get off my back, i have effing cancer.

It’s now October 26th, in the year of someone’s lord. All kidding aside, since my last update my weight had slipped back down to 117 pounds as a consequence of the chemo that I was on becoming ineffective. The chemo seemed to be working until the second week of August, when a scan showed that my tumors were no longer shrinking. My liver tumor’s size was stable at best, and the scans showed new tumors in my lungs.

Despite this, I still had enough energy to make the trip out to Burning Man. Up until Burning Man, I had only been out of the house on two occasions for a total of three nights. With our early entry passes, we spent 10 days out there in the desert. It was the most normal I had felt in a long, long, time. The trip out there was made even more special by the fact that it was Dillon’s first time going, which invigorated me all the more. He fit right in, and I think that considering everything that’s gone on the last couple of years, it was a great break for us from the illness, emotionally, spiritually, and physically. As I’ve mentioned before, I’ve given away snow cones for many years at Burning Man. It was great to be able to repeat this tradition, and we spent many wonderful afternoons serving cones to thirsty Burners. We ended  up giving away over 1,000. This total can be verified by our paper cup count in case anyone has their doubts.

"You'll get yer damn cone when I say you'll get yer damn cone!"


The Camp Frosty Crew 2012

On the medical front, I had to have my chemo port removed from my clavicle after returning from the playa because it was interfering with my blood flow and causing clots.

My energy level had felt completely and totally normal while I was out there on the playa. This prompted us to plan a trip to Boston with Dillon, Kaki, and my mother three weeks after I got back from Burning Man, which set a series of problems into motion. One of which was that I had already been three weeks without chemo after Burning Man, but had not yet received authorization from the insurance company for the new chemo regimen. This was  denied, to our surprise, since the chemo was approved for breast cancer, not pancreatic cancer. After several failed attempts to get them to approve it, and facing the prospect of over a month with no chemo at all,I convinced my oncologist to give me my old chemo formula the morning of my trip to Boston. And, true to Murphy’s Law, the new chemo was approved an hour before my flight took off.

The old chemo proved ineffective in combatting my pain, so my trip to Boston was both wonderful and extremely painful. We brought a wheelchair, forgetting that the sidewalks and cobblestoned streets of Boston are some of the bumpiest and pot-holiest in the country. Highlights of the trip were obviously getting to see a lot of old friends I haven’t seen in a long time. I especially want to thank one of my oldest and dearest friends, Cindy Walsh, who generously put us up at the W Hotel downtown for 5 nights.

This was a preamble to the two nights we spent at the family beach house of another, more recent friend, Christine Troy, in Wellfleet on Cape Cod. The house was beautiful, and it was a dream come true for my mother – Cape Cod is one of her favorite places in the world. I had to practicaly drag her back to the city. In Provincetown, at the far end of the Cape, we were joined by one of my closest and oldest friends, Bobby Mac. After Bobby left, Kaki, Dillon, my mother and I had one of our most special moments watching the sun set as we sat on the beach there. I dropped my mother off in Boston to meet her husband Al so they could join the moving truck on its way to Florida, their new home  (It should be noted that my mother is already preparing to experience her first hurricane). It was nice to see Al, since I hadn’t seen him in four years. My mother usually comes out to visit me on her own, as Al is afraid to fly. Hi, Al! The trip also included many little visits with my sister, for which I couldn’t be more grateful.

Back in Boston (Somerville to be precise) one of the highlights of the trip was getting to wander through the house I grew up in. The people my mother sold it to still own it. And allowed me and Kaki and Dillon to tour the whole place. They could not have been a better fit for the house, they were friendly, warm, and very down to earth. I also was comforted by the fact that his superstitious nature had prevented him from painting over the children’s drawings he had found on the walls in the basement. They were works of art by my sister – witches with pumpkin heads and similar themes. Thanks also to the Bills for letting us stay with them in Maine, and my oldest high school friend Anne and Jeff (and their menagerie of pets) for their hospitality.

The trip was successful on many levels, but I did come home exhausted from the constant pain, and have yet to recover. To be honest, I’m not sure if the lack of recovery has to do with exhaustion from the trip, or if I’m looking at the new normal. I have had two treatments with the new chemo since returning, however, and it does seem to be having some positive effects. My appetite is better and I’ve gained back some weight. I now weigh 123 pounds. We’ll know more about where things after my next scan in a few weeks time.

Big love