Gifts

Last week I spent three days in Grand Marais, one of my favorite places in Minnesota. I had a few free days and wanted to get some northern Minnesota time in before beginning radiation.

I love nature. To me, it is very therapeutic. I remember when I had leukemia, I was in the hospital for over three weeks during the month of May. When I came home, my parents got me a swing for a yard that I just sat in every day, soaking up the sun and the fact that I was alive and healthy. This year, I realized that "nature therapy" needed to be part of my prescription for remission and complete and total health.

I drove up to Grand Marais on Wednesday evening. Thursday morning, I walked around town a bit and found a place to eat breakfast. I sat outside, looking at the harbor on a gorgeous day, and thought not just that this is beautiful, but "This is cleansing."

The Superior Hiking Trail Association has a Seven Summits Challenge, they name seven summits along the length of the trail, and if you hike to the top of at least five, you can earn a free poster. For me, it just seemed like a good idea to explore different parts of the trail. I had already hiked Mount Trudee (in Tettegouche State Park) in June. So Thursday morning I hiked to Pincushion Mountain, followed by Lookout Mountain. Friday I drove along the Gunflint Trail looking for wildlife and eating berries (I did hike to Magnetic Rock - not part of the challenge), then Saturday I hiked to Oberg Mountain and Moose Mountain before heading home. I didn't see any large mammals, but I did see bear scat, wolf tracks, and multiple species of birds, amphibians, and plants. As I was hiking on Saturday, I saw an all white plant called Indian Pipe - it feeds on decaying matter and is unusual in that it doesn't contain any chlorophyll. Then I saw a small Wood Frog. I started thinking of all these great things I was seeing as gifts.

Shortly after I turned around to head back to the trailhead, it started to rain. It had been cloudy when I set out, and I had been hearing thunder for the past hour, so I was ready with raingear. Even so, I got wet. My first instinct was to complain about the rain, but I decided to think of the rain as a gift as well - I'm alive, able to hike, see all this beauty around me, feel the rain.

Eventually I made it back to my car and headed for home. I turned on the radio, where I learned exactly how timely my thoughts of life's gifts had been - I learned about the death of Amy Winehouse at 27, and the deaths of numerous Norwegian youths from a shooting.

Life is a gift, and we should cherish each day.

Surgery #4 Addendum

I realized that I never provided an update with final results from my June 27th surgery. This was the surgery to remove any residual tumor, especially above the elbow, which was not looked at during the previous arm surgery.

They did find tumor above the elbow, which they followed until it went inside some of the nerve strands and ended. For this reason, they had to cut some of the nerves, so I will have some permanent nerve damage. It might take up to a year to find out what function returns and what loss is permanent.

I asked Dr. Ogilvie if he believes that all the (macroscopic) tumor is now gone, and he responded yes. In addition, some additional tissue (fat and blood vessels) was removed from the surrounding area, and this came back as negative for the presence of any miscroscopic tumor. Between this, the negative liver pathology, the negative lymph node, and the negative lung CT scan from April (I am due for another one in the next month), it appears that the sarcoma was limited to the tumor that has now been completely removed from my left arm.

A month after completing radiation, I will have another MRI of my arm to look for signs of any cancer. I will have both arm MRIs and chest CT scans quarterly, and then less frequently, to monitor for recurrence, for the next five years.

Rein In Sarcoma

Many people with whom I talk have never heard of sarcoma. As I may have described in a previous post, sarcomas are cancers of the connective tissues (muscles, bones, fat, and in my case, nerves). Sarcomas are rare, comprising only 2% of adult cancer diagnoses, but they are one of the top five cancers affecting children. There are many types of sarcomas, all with different treatments and prognoses.

Because sarcomas are rare and not well-known, there is not as much research - or as much funding for such research - to find a cure than for more well-known cancers. There are multiple foundations with the mission of promoting awareness and research for sarcomas. These include the Liddy Shriver Sarcoma Initiative, the first website I found that gave me reason for hope after reading many dismal things about MPNST, the Amschwand Sarcoma Foundation, and Rein in Sarcoma, a local organization.

www.reininsarcoma.org

Rein in Sarcoma was founded by Karen Wyckoff and her family shortly before she died from synovial sarcoma in 2001. It is the largest sarcoma foundation in the Upper Midwest, dedicated to sarcoma research, support, and education, often working with University of Minnesota physicians and researchers. Since it was established, Rein in Sarcoma has raised $800,000.

Tomorrow night, July 25th, is Rein in Sarcoma's largest annual event, Party in the Park. This is an event to honor survivors, remember those lost, and raise money for sarcoma research. It's held at Como Park and includes music, entertainment, "family fun," and a silent auction. In addition, Scott, my parents, and I will be attending a family picnic, at which I'm planning to meet Jody, an MPNST survivor, and also hoping to meet Ruth Bachman, a very inspiring woman who had her arm amputated in 2003 to save her life after being diagnosed with histiocytoma (www.ruthbachman.com).

So, if you find yourself in the St. Paul area tomorrow evening, please consider attending and supporting Rein in Sarcoma.

Radiation

I will be starting radiation on Wednesday, July 27th.

I met with Dr. Cho, the radiation oncologist, to discuss the radiation process on July 13th, two weeks after my surgery. They wait four weeks between surgery and starting radiation in order to allow the incision to heal, as radiation impedes healing. My next appointment was last Wednesday, the 20th, during which I had a CT scan of my arm and they created a mold in which my arm will be placed for each radiation session. I also got my tattoos - yes, they really are tattoos, except they are so small they look like freckles except that they're blue. The CT scan, mold, and tattoos all help make sure the alignment is exact for each session to allow the radiation beam to hit the tumor area precisely - they want the highest dose to hit where the tumor, with lesser doses targeting the surrounding area, all while avoiding bones and the elbow joint.

Symptoms will mostly be skin-related - burns with maybe some blistering, and loss of hair from the area being irradiated (but not for anywhere other than my arm - i.e., I won't lose the hair on my head). Fatigue may or may not be an issue, but I'm planning for it not to be. Finally, the long-term effects include swelling of the arm and weakening of the bones of the forearm. They are reducing the total dose I'll receive from 7000 (I forget the units) to 6200 due to my previous radiation exposure. In addition to the risk of additional subsequent cancers, they are concerned about damage to the arm bones and elbow joint. I emailed Dr. Pollock at MD Anderson, and he said that this was the dose that they would prescribe as well, which is reassuring.

Radiation will be delivered five days a week, for 31 or 32 sessions, depending on how my skin is doing. The 32nd session would then be on September 9th (I wouldn't receive radiation on Labor Day). I would have a party that next Friday, but it's the weekend of Wisconsin Ironman, at which many of my friends will be participating or cheering, so mark September 16th on your calendars!

I'm told that each radiation session will be very brief, basically a zap - it will take much longer to drive to the East Bank and park than to get radiated. Side effects will take a while to appear, and will continue for a while after completing the sessions. The radiation also continues to work for a while after completing the sessions, for that reason they will wait a month for me to have a repeat arm MRI to determine whether or not I'm in remission.