Progress isn’t always obvious

Over the last 72 hours I’ve lost all the hair on my head, learned about the latest progress in carcinoid/NETs research, spent time with four carcinoid/NETs patients, learned there are apps to help you find the nearest bathroom, counseled and consoled two people who are losing someone to cancer, walked through the night and into the morning at Relay, and come home again to an empty house.

Cancer is still in the world and my house is still empty…

To say those 72 hours have been emotional would be to state the obvious. To say I have learned a lot–about science, about the human spirit, and about myself and my role in the ongoing fight against cancer–in those 72 hours would also be stating the obvious. But sometimes the obvious is so obvious we miss what is really going on. Just because it is obvious doesn’t mean we notice it. Progress is often like that.

Progress through shorn locks

You would think shaving the hair off my head would not be a big deal emotionally. I’ve been slowly losing my hair for years. Just as the gradual greying of my hair didn’t bother me, that gradual hair loss was meaningless. It was simply a part of the aging process–and not a big deal.

Just because it is obvious doesn’t mean we notice it.

Going to the barber to have it all shaved off as the result of a Relay challenge I made to donors seemed like no big deal either. Then my hair was gone–and with it went a piece of my public persona. I was uncomfortable with the face looking back at me from the mirror because it was no longer my face. I felt somehow insecure about who I was and I was nervous about people seeing me in public. I was glad I usually wear a hat when I go out.

The progress of self-discovery

I’ve read about cancer patients losing their hair and how emotionally wrenching that can be. But until Thursday I had no real perception or understanding of what a person’s hair does to how they feel about themselves. I can’t claim to understand how my sister felt when her cancer therapy removed her hair–or how any cancer patient really feels when they confront that. I don’t have cancer and am not undergoing the brand of therapy that has that as its side-effect.

…with it went a piece of my public persona.

But I do have a much better inkling of what a patient feels than I had before. It is not just a physical manifestation of the illness, it is also the loss of the appearance that has been a part of the person’s self-identity: If the cancer and treatment are changing me like this eternally, how is it changing me internally–both physically and psychologically? Being bald has changed my perspective in some valuable ways.

Progress in treatment and understanding

Had losing my hair been the end of that 72 hours, that would have been enough. It was not. Instead, on Friday morning I went to Randolph, a town just south of Boston, for the New England Carcinoid Connection Conference. This is a patient information conference held every two years to bring patients and their lay caregivers up to speed on the latest progress in research and treatment of this disease.

Being bald has changed my perspective…

When Jane was diagnosed with carcinoid/NETs nearly four years ago, there was exactly one drug trial for any form of NET cancer available locally. It was for pancreatic NETs–which Jane did not have. Even if she did, she would not have qualified for the trial because the cancer in her liver was so advanced.

Patent progress

That is not the case today. Jennifer Chan, who was Jane’s oncologist, gave a talk on just the major trials that acre currently underway or that are close to releasing their results. There were more than a dozen total that she talked about in detail. There are more than 80 drugs and radiation treatments at one stage or another in the drug trial process, each of which has the potential to be a game-changer. The new immunotherapy also got some mention as having real potential to make a difference in patients’ lives.

…there was exactly one drug trial for any form of NET cancer…

I had lunch with four women with real interest in those potentials. They are all carcinoid/NETs patients, three of whom have been dealing with the disease for a number of years–and one of whom is newly diagnosed. I am always struck by the keen wit of carcinoid/NETs patients. They are uniformly intelligent people–and most are quicker to laugh than to cry.

Progress of a more mundane kind

At one of the break-out sessions, a patient talked about a list of public bathrooms in the US she had found online. At lunch, among much laughter, we decided this would be a useful app to build–if no one already had. Out came a smart phone and a web search ensued. there were, it turned out, more than a dozen such apps just for the US–and more for Europe, Asia, and Australia. With names like Sit or Squat and Where to Wee, we all had a good laugh.

I had lunch with four women with real interest in those potentials.

But for all of us, that topic was deadly serious as well. For carcinoid/NETs patients–who often travel with a change of clothes in the car for even short trips where they know where the bathrooms are along the route–that kind of app can be a lifesaver. I remember the occasions when Jane and I found ourselves in unfamiliar territory when the need for a bathroom arrived. I remember the real panic involved. I think all four of the patients either downloaded the app or planned to before they left.

The journey home

After lunch at the conference, I scurried out the door to head south while everyone else headed for the afternoon sessions. By 2:30, I was at the Relay for Life of Greater Fall River working with our team to finish setting up our site and prepping in the cooking area to serve clam cakes and chowder to the throngs of attendees as one of our on site fundraisers.There are always glitches and unforeseen events at any major undertaking–and this one was no different.

I remember the real panic involved.

But we never know what impact we are having on people’s lives–or what our role in those lives is. I spent two years as the local Relay chair. That meant making lots of speeches and presentations–and accidentally becoming a roll-model for people who are losing–or have lost a loved one.

Work in progress

I won’t go into the details of the situation. The people involved need their privacy at a time like this. But they wanted to know how to get through the days ahead–days they know will end in death for someone they care about. The truth is I am never sure what to say in these situations. I can only try to explain what I think I did with Jane: express your love in every tangible way you can, live second-by-second and minute-by-minute, and know that you are going to make mistakes and forgive yourself for them.

…we never know what impact we are having on people’s lives…

 

None of us is perfect and we all second-guess every decision we make after-the-fact. But we do the best with the information we have at the time and the best understanding we have of who our loved one is and what she wants. More than three-and-a-half years after Jane’s death, I am still plagued by second thoughts about the first time she slipped into a coma–as well as the second. The best medical advice I had–and my best understanding of what Jane wanted–guided those decisions, yet I still have moments when I think I should have let her go earlier.

A walker’s progress

As is my custom, I shouldered much of the walking responsibility in the small hours of the morning. Some of the time, I walked alone. Some of the time I walked with others. Sometimes we talked about Jane and others we have known with cancer. We talked about what we did wrong this year–and what we got right–in this year’s Relay campaign. We talk about progress. Sometimes, especially with the younger people, we talked about their hopes, their dreams, their aspirations and what they are learning and thinking about.

…I am still plagued by second thoughts…

And after we had packed everything up and dropped it off here, I went back to the Relay site and walked three more laps by myself. At the end, I stood up on the small rise behind where our encampment had been and looked out over the now largely naked terrain. Then I came home, showered, brushed my teeth, and fell into bed 18 hours.

Growth’s slow progress

I slept and dreamed and physically recovered. But I remain emotionally raw. Cancer is still in the world and my house is still empty of all but reminders of my beloved.

 …I went back to the Relay site and walked three more laps by myself.

But my hair will grow back–and the topiary heart that died with Jane and that I replanted after her funeral is three-quarters of the way to filled. That is also progress of a kind.