Coming Out of the Cancer Closet   April 24th, 2011

It’s tough to believe it’s been almost a week since my last missive here, but getting ready for the move to Boston, followed by the actual move itself, was time and energy consuming. As I sit here writing this, my family (cat included) are winging up from Atlanta to join me in this new urban adventure. None of us, other than via hotel stays, has ever lived in a sizable city before, so there will be a lot of adjusting to things like city sounds all day long, not having a vehicle of our own, and being beholden to a landlord (the last time we rented anything was about right years ago, and that landlord was pretty much uninvolved).

On the plus side we have a wicked fast Internet connection, an unlimited number of dining options, have a great view from our 37th floor apartment in the West End of Boston (see end of this post), and a Whole Foods super market around the corner.

And this move of ours to a city to be close to the place where I am going to be treated for my cancer brings me to one of the subjects of today’s musings, namely how people think of cancer.

Feeling Alone In Cancerdom

When I was first diagnosed almost five weeks ago I felt I was alone in the world with my diagnosis, and likely to die very prematurely.

All we ever hear about cancer in the media tends to slant towards the negative, and feed our inner worry demons. Cancer is equated with near-certain death in the common consciousness. Furthermore, people who have cancer are commonly viewed with pity and sympathy, or ignored because people don’t know how to react to such a potentially deadly illness. At least folks don’t seem to erroneously think that cancer is contagious, so the cancer afflicted are not put into virtual quarantine or shunned for that reason.

Presumptions are made that all people with cancer are actually suffering from that cancer, because that’s what we see on TV. Television cancer patients have no hair on their heads, they look weak and exhausted, and are frequently in hospital beds with their families hovering around waiting for finality to take place. While that can and does happen, as I have been learning, that is only one possibility of many, and only in some circumstances and situations (including later phases and stages of cancer progression and treatment).

Certainly in my own case, at the moment, other than still waiting for my skin graft to heal, I am in great overall health, and I feel fine, and am not suffering physically from the cancer that is likely to still be in my body. I am also continuing to work as time permits, as my mind is as lucid and capable as it was before my diagnosis. The fact I was still working came as a shock to some of my family members, as, after I had cancer. I had to explain that having been diagnosed with cancer did not mean I was automatically feeble and tired – quite the opposite, as I feel energetic and am twitching to do things.

Of course, it weighs heavily on me that I may still have some microscopic denizen on the verge of wreaking havoc in my body, completely outside my control or ability to see or feel it. And it bothers me a lot that all of my upcoming treatments – my lymphadenectomy surgery in a couple of weeks followed by a lengthy treatment of injections to boost my immune system – are all being done in the hopes that they will remove whatever cancer cells I may or may not still have in my system, without any real guarantee that such treatment will be successful or that such treatment is in fact even totally effective. There is, fundamentally, a lot of hope involved here, and as I previously discussed, statistics play a large role in the determination of the method of treatment. Here’s hoping that I end up on the good side of those statistics.

Coming Out

During the three weeks after my initial diagnosis, and while I was waiting for my biopsy to be completed, I made a critical decision. That decision was to go public with my situation regardless of the result of the biopsy because it seemed to me that there were not many first hand accounts of people who were recently diagnosed with cancer, and considering how innocuous looking the mole I had removed was, I wanted other people to take a serious look at their skin so that they might have a better chance at early detection as well. It has become pretty obvious from my diagnosis that cancer can strike anywhere at any time and I want to make sure my family and friends do what they can to avoid health problems and worries of their own.

In fact, my decision to go public was motivated by a photo a good friend on Bonaire had sent me in February, showing all the bandages on said friend’s face after having several suspicious moles removed. Fortunately none of those moles were cancerous, but I figured if my friend was brave enough to send out photos that made them look like a mummy-in-training, it was a good idea to take my skin more seriously. Had I not done so, my malignant mole would likely not have been removed for months, and I would have cancer irreversibly invading my entire body, and not just a small (hopefully) part of my lymphatic system. Using the same logic, I figured my going public might help someone else find a problem sooner rather than too late.

In retrospect, going public with my diagnosis and not-so-good biopsy results was probably one of the best things I have done in the last month (other than getting that mole removed). The reason is that as a result of my coming out of the cancer closet I learned that I was not alone in my diagnosis, and that survival was a not uncommon outcome after treatment. That was an enormous relief, and buoyed my spirits and outlook.

In fact, I started hearing from many friends that either they had had cancer themselves, or that their close friends and family had had cancer in the past, suffered through treatment, and in many cases went on to live a long life (or were still living). Sure, there also have been the not so pleasant outcomes, but just knowing that there were others with melanoma who had beaten that cancer into remission was very much a relief.

What I found interesting was that with so many personal reports of cancer in people of all age groups, there is so little information out there from current cancer patients and cancer sufferers. Cancer is definitely not an isolated disease – it appears to be incredibly common, in fact. But we just don’t hear much about it.

We tend to hear a lot more about famous cancer survivors, but very little about what they were going through while being treated for cancer. And perhaps that’s not as surprising as it should be, because there’s a stigma associated with having cancer, as if it’s something to be ashamed of – something that should be hidden away and not discussed for any number of reasons.

Well, I’m going to try and tackle that stigma here in my blog in the hopes that what I’m going through will help others who have been or will be diagnosed with cancer of some type, and to let them know they are not alone out there with their diagnosis and their worries.

I will add that by going public, the outpouring of support, love, positive thoughts, good karma, and prayers I have received has been overwhelming and stunning. Having gone through this, I cannot imagine the alternative: suffering silently without that healing support and love.

Mind you, going public with cancer does have another effect – namely that you become responsible to all of your friends and family to kick that cancer in the butt so you don’t let them all down and disappoint them and their faith in you. So, that’s my plan – to beat this foul thing down both for myself and my family and friends.

In Closing

In closing, let me share a photo that inspires me at present – one of the views from our new temporary apartment in Boston:

Partial view from our Boston apartment at dusk

Partial view from our Boston apartment at dusk

 

This entry was posted on Sunday, April 24th, 2011 at 16:05 and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

9 Responses

April 24th, 2011 at 16:34
Kay Powers Says:

Keep writing Jake. I can attest to the self healing it provides.
I also went to several cancer support group meetings and I can tell
you that after I left my first one I forgot about me. I went back to several
of them only to be there for the others that were going through their
battle with cancer. It helped to shut my brain down worrying about me
and to be concerned about them. It brought lots of peace within.
Happy Easter and God Bless!

April 24th, 2011 at 17:27
Shella Brenner Says:

Hi Jake, A message from a long-ago friend. I’m very moved by what you’ve written and thank you for the reminder that we should all pay close attention to our health. I wish you every bit of happiness in what I know will be many many long and wonderful years ahead. Take good care. All the best, Shella in San Francisco

April 24th, 2011 at 21:23
Dawn Spencer Says:

Thanks for the info. Yes, keep writing, keep us up-to-date. You are still on the prayer list at My Church, & my list as well :) One more week & Scott & I will be in Bonaire for the month.

April 24th, 2011 at 22:47
Bud Smith Says:

Hi Jake,
I had somehow only caught hints of this up to now. My sympathies to you and yours for the shock and strain of the diagnosis, move, and changes.
The stigma associated with cancer is definitely real but has improved during my lifetime; when I was a kid, back in the 60s, many people would literally not say the word “cancer” in conversation.
Family of mine who visited Australia recently said that cancer seems to be ubiquitous there, I think it’s because they have the full American lifestyle plus much more sunshine than the US average (and a love of tanning, until recently unmediated by sunscreen). Also the fact that it’s so prevalent means that more people are surviving it (knocking on wood…).
I know that the battle/enemy metaphor works for a lot of people in marshalling (another martial word!) their energies against cancer. An alternative view is that we all constantly have runaway cells in our body, and that what we term “cancer” is simply an imbalance, a matter of degree. (Prostate cancer is a good example – so many men die whilst having it, but not because of it!)
So fighting cancer can be seen as a bit less like a game of Space Invaders and a bit more like chess or Go, where you strategize to make your forces stronger, the opposing side weaker, so that eventually you (the healthy, or at least not out-of-control, cells) control the entire board, and the opponent has no space and must retire. This is just offered as another way of framing the competition.
You and yours have squeezed more out of life, and given more to others, than most people; you have my love, prayers, and fond hopes for much more to come.
Love,
Bud

April 25th, 2011 at 02:09
Jenna Says:

Oh, I have NO doubt that you’ll kick this thing. And you’re right…your job is to beat cancer. I will accept nothing less and I don’t do well with disappointment. I blame being an only child. So, really, you have no choice but to get better.

April 25th, 2011 at 09:56
Cecil Berry Says:

Hi Jake

Kick it’s butt. Love, prayers and good vibes your way. Interesting article on Hoffington on Melanoma.

http://www.huffingtonpost.com/robert-tornambe-md/melanoma_b_850558.html

This doctor stresses sunlight as a cause which does not make sense in your case and a lot of other cases. Yet it is prevalent in fair skinned people and sunny climates. I blame Al Gore.

What’s happening with your Bonaire puppies?

Cecil

April 25th, 2011 at 09:56
Gail Thomas Says:

Only you, Jake, would find the positive in your situation. That being, that you and your family would experience living in a large city, relying on public transportation, and shopping or eating out within blocks of your temporary home!
I admire you for going forth publically on your journey against cancer, and reminding ALL to check their skin for any suspicious growths. Living in Florida, my son (age 34) has already had a stage 0 melanoma removed…. We did not put sunscreen on him 30 years ago….. and he was our proud little brown boy. Little did we know the potential damage we were doing to our child……
You have been in my prayers each night, and will continue to be there until you kick this demon’s a$$! So kick away, Jake! Kick away!

April 25th, 2011 at 17:12
Vince D Says:

Thanks for “going public” with this. Your writings will definitely motivate others (myself included) to pay close attention to anything suspicious. No doubt you’ll turn lemons into lemonade.

April 29th, 2011 at 16:31
Jake Richter Says:

Thanks all!

Cecil – our goddaughter is taking care of the pups back home. She’s living in our house while we’re gone (she’s usually in the guest apartment anyhow, so not a big change for her).

Gail & Jenna – I’m kicking!

Bud, old friend, I love the Go/Chess analogy, and agree wholeheartedly!

Jake