Pathfinders are people who provide practical knowledge and inspiration towards managing a journey or reaching a destination.
With a diagnosis of metastatic melanoma, I was thinking, “This looks very bad for survival beyond a year, proposed treatments are demanding and dangerous, and 5-year mortality statistics are frightful. Whoa — I am in overwhelm. Who can I look to for inspiration and guidance on how to live through this?”
Following were three of the most memorable pathfinders I encountered.
Peter Ogle, of Corvallis, Oregon was first diagnosed in 2006. Peter received several treatments and recurrences, culminating in a metastatic brain tumor in August 2012. Peter had unwavering Christian Faith. He wrote:
Despite my prayers, and the earnest intercession of friends and family, God has not yet taken cancer from me. I live in his world totally at his pleasure. What God has done for me in Jesus Christ, however, is a vastly greater good: he has taken upon himself the corruption of not only my body but also my soul. On the cross, he has made my cancer his. God sent his son not necessarily to cure me but certainly to heal me. It’s this truth to which I cling this Holy Week, as I ponder the final days of the earthly life of Christ.
Peter died from the effects of the brain tumor on May 8, 2013. Peter’s blog, The Ogler, includes a tribute from his family.
It seems that for the Christian, Christ offers an ultimate pathfinder, by coping with suffering and death as well as a promise of lifesaving redemption.
Constance Emerson Crooker, of Portland, is a dear friend. Eddy and I encountered Connie via her book, Melanoma Mama: On Life, Death, and Tent Camping in the Providence Cancer Center resource room during one of my treatment weeks.
Connie encountered melanoma as a skin lesion on her back in 1990. Metastatic melanoma first appeared in Connie’s abdomen in 2008, in her chest in 2009, and in her brain in 2012, and 2014. Events since 2012 are recounted in Connie’s blog at caring bridge.
In January 2015, Connie writes:
I have gone toe to toe with the Grim Reaper enough that I have learned two things. First, my “expiration date” is flexible and possibly even negotiable, as it has been miraculously extended multiple times. Second, I cherish joy whenever I can. There can be richness to life, even in the valley of the shadow of death. Now, bring on the snow on Mt. Hood, so I can use my senior downhill season ski pass ASAP. A closet-sized storage locker on my new deck will house my skies, my snowshoes, and of course, my tent-camping gear.
The above quote captures a bit of Connie’s humor and indomitable courage. Connie inspires us to make the most of the remaining time, and offers the advice that the remaining time is probably longer than we fear.
Bob Heffernan consented to an experimental treatment in 2010, through National Institute of Health in Maryland. Surgery and Interleukin-2 treatments had failed to halt progression of stage 4 metastatic melanoma and experimental treatment was described as his “last-chance.” Bob describes this adoptive cell transfer (ACT) treatment as follows:
NIH researchers have discovered the body makes specialized white cells to fight the cancer — they call them TIL cells (tumor infiltrating lymhocytes). Surgeons at NIH took out the largest tumor they could find, which was rushed to the NIH lab. Just four days later, I was standing in the lab looking through a microscope at those little TIL cells. The lab spent another four weeks growing my cells (their target is 50 billion cells, but for me they grew 67.2 billion!). When the cells were ready, NIH called me back and hospitalized me for another three weeks. During this time, they took down my immune system (one week), and infused the new cells into my bod, and spent the next two weeks rebuilding my immune system.
Bob credits the ACT treatment for sending him into durable remission. In 2013, Bob wrote Cancer’s Gifts with Love & Hope to tell his story for others with melanoma. Of his experience, Bob writes:
“You have the right to suffer in silence, but what I found out is, when the world around you knows about the cancer, you will experience an incredible amount of love and support that you otherwise would not have gotten from people around you.”
Bob recommends sharing the story of your illness with your network, and, as needed, taking even big risks with experimental treatments, a strategy that has rewarded him with durable remission.
While I could relate more stories shared by others with melanoma, it seems more useful to draw this post to a close with a summary of some key points that I’ve learned from seeking pathfinders. Here’s a summary of what I have valued:
- knowledge that cancers and cancer treatments are very different
- information about additional treatments and facilities for melanoma
- realistic information about likely courses of metastatic melanoma
- realistic hope for a better outcome, including durable remission
- encouragement to live fully today despite my disease
- resources and contacts for support
- evolving treatments for potential future use
- courage to consider unpleasant or risky treatments
- respect for the research work on melanoma treatments
- a healthy respect and concern for treatment side effects
- appreciation for medical teams who specialize in melanoma treatment
Some have told me that they prefer not to search the Internet for information about other people with their form of cancer because of encountering too much scary news about unpleasant treatments and impending mortality. Initially, I had the same reservation, but this receded as I focused on the people and what they were saying about living with cancer.