August 1, 2015 – Today I figured out that I am truly alone in my melanoma journey. I know that isn’t fair to my wife, my kids, my family, and my close friends. But that’s how I feel right now…alone. You read a lot about “not being alone” in your fight with cancer. It’s embedded in the American Cancer Society’s literature, along with handouts and brochures from other cancer groups. You see t-shirts (like the one I added to this post), stating “I am not alone.” Well, guess what? I AM ALONE! Regardless of how many “supporters” I have, in spite of all the thoughts and prayers I receive—hourly, daily, and weekly—I truly feel ALONE in my journey. This is MY journey and no one else’s. I know, obviously, that there are many, many others on this same journey. But the path I take is mine. So, I truly walk alone.
Why do I feel this way? And why today…August 1st? Let me give you a little background and perspective:
Ever since I was diagnosed with my most serious melanoma in 2011 (I had previous melanomas removed all the way back to 1998), I have researched and poked around on the Internet for folks who also had “advanced” melanomas – Stages 2 to 4. I joined on-line chat groups, got on email lists, and started utilizing Facebook to connect with melanoma groups and foundations. (This was also the time I began to reconnect with high school and college friends.) Frankly, I was scared, very scared. And, obviously, worried…worried for myself and for my family. I wanted to make a connection with others so I did not feel “alone,” in spite of all the prayers and support I have received – and continue to receive.
It’s hard to describe my feelings…People who have suffered a loss, or who have a chronic condition – such as cancer – always talk about how it is difficult for others to truly understand their perspective. I’ll admit that I sometimes forget about others’ situations because I am so focused on my journey, which, I think, is a typical human trait – we ARE self-centered as creatures – it’s just part of our DNA. I simply wanted to be able to “bend someone’s ear” who knew exactly where I was coming from…and not just someone else with cancer. Ultimately, I did find some of those folks (I’ll write about one of them in my next post), and it helped me to not feel so isolated…so alone.
Eventually, life got back to normal, or as normal as it could be given that I had to see an oncologist every 3 to 4 months. My scans were “clear” and life was pretty good until that day late in July 2013 when my world was flipped upside down. I began a new quest to connect with others – primarily online – but did not have much success. I asked for help and support from the local cancer clinic that I go to – nothing ever materialized. I asked from help from other cancer groups, but that went no where. I had minimal success with reaching some other local melanoma patients online (primarily through Facebook), but those connections quickly fizzled out.
While some of the Facebook groups I joined were initially helpful and supportive – although many of the members are whiny and weird – as I have previously explained, I have a somewhat rare genetic mutation of metastatic melanoma and my treatment regimen is very experimental. To put this in perspective, of all the folks with Stage 4 metastatic melanoma, my genetic version – along with my chemo treatment – accounts for less than 5 percent of all cases. In other words, even within my disease I really am ALONE!
Feeling even more frustrated and isolated, I “gave up” for awhile on finding comrades in arms and refocused myself on my life, my work world, my family, and my journey. Other than the one or two online “friends” I kept up with, I just continued to walk alone in my melanoma journey. It still just amazes (saddens?) me that I could not find anyone locally to commiserate with. And as I stated a few sentences ago, I just decided to live my life almost as though nothing was going on (which was also the advice from my cancer doctor).
Fast forward to early July (2015)…I was looking through an insert on health in our daily local newspaper when I see an ad for a melanoma 5K on August 1st. The race is sponsored by the Melanoma Research Foundation (MRF), an organization that I have kept up with since my serious diagnosis in 2011. Needless to say, I was somewhat baffled and excited to see that something was happening here in Memphis. In fact, the 5K would be held at Shelby Farms, a beautiful park that is less than a five minute drive from our house.
I immediately signed up to volunteer for the morning shift – help with setup, etc. – and received a couple of email confirmations. I was tentative in my enthusiasm and expectations. At the same time, however, I was really hoping that I could find some local comrades to make my walk a little less lonely. The race was a few Saturdays away, so I went back to my typical routines.
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| I do! |
The morning of August 1st came…I had to be up very early, and I was a little apprehensive. But when I arrived to a mildly chaotic scene – typical for the atmosphere of a pre-race setup – my “jump right in and help” mentality kicked in, and I started doing whatever I needed to do to help out. After a while, I caught up with the race organizer from MRF, who was very nice, but very busy. When we got a moment, I asked her, “Do you know of any local melanoma support groups?” There was another woman standing there who heard my question. She appeared to be a melanoma patient/survivor who had her own team running in the 5K to support her journey.
I’ll never forget this as long as I live – even though I want to – she (the melanoma patient) turned to me and said, “Why don’t you start one?” She didn’t have much personality – I had already had a prior conversation with her – and her facial expression was anything but warm. I reflect back on it and think maybe she was just making a suggestion…but, it was NOT what I wanted to hear…it was not what I wanted to feel. I’m not even sure of my reaction, other than to say, “Maybe I will?” Which is typical of me in those types of situations. I don’t always think well on my feet. I should have said maybe I will and why don’t you help me. But I didn’t. It just took all of the hope out of my being. I remember later on, standing there on the grassy slope leading to the signup tent watching all of these “teams” show up in support of these other folks with melanoma. I didn’t have a team…I didn’t have someone with a cute t-shirt that said “Team Ken,” or “Ken’s Warriors.” I had nothing…I had an “out-of-body” experience and felt like I was watching myself being alone…it was just awful!
I left. I had finished my setup job and didn’t want to be there any longer. I went home, kissed Vicki, and told her how much I hate my disease. Then I went outside and spent the remainder of the day doing yard work and trying to forget that morning. I still remember that woman’s name, however. I have it written down. Someday, I pray that she’ll understand how devastating her words were to me.
Life went on..we took Zach back to college and Emily back a few weeks later. I tried to connect with the MRF folks to see if I could get the names of the 5K teams/participants as a first step to trying to organize a local melanoma support group. Unfortunately, that didn’t go anywhere, and I got back to worrying about my own health issues.
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The band Green Day has a song titled Boulevard of Broken Dreams. In that song, one of the stanzas goes:
I walk a lonely road
The only one that I have ever known
Don’t know where it goes
But it’s home to me and I walk alone
If anything, these lyrics sum up my existence on this Earth. I have always walked alone. I have never “fit in,” I’ve never been “one of the boys,” and I’ve never been completely comfortable with who I am.
Maybe that’s why the morning of August 1st hurt so much…it just re-emphasized how I am just completely alone in this world.
Writer’s Note – I’ve been on an extended hiatus for well over nine months. So, I first want to say “Thank You” to all of you who continue to stop by and check out my blog. This blog and several to follow have been accumulating in my head for quite a while.
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