The Importance of Connection and Hope In The World of Cancer, Especially The Rare Ones

Being diagnosed (or having your other half receive the diagnosis) with a cancer that you never even knew existed, or was possible, sent shocks through our world that felt like the greatest earthquake on record. I’m sure some of you can relate, because in the cancer world, there are plenty of rare, orphan diseases like ours. In fact, receiving one of the plethora of cancer diagnosis can lead to some of the same feelings and revelations we have encountered. With this, I hope some of you can relate to the misconceptions, the misunderstandings, the importance of hope and community, and the task of research into finding the best team and the best treatments to arm yourself. I write today to not only share our story and spread awareness for my husband’s cancer, but also to touch and connect with others in the cancer community who are rocked by this paralyzing word.

The surprise of the diagnosis traumatized us. We felt broken. My husband was only 28 years old, our children only 3 and 1, our dreams abruptly changed, and the idea that we were jolted by something we never knew existed only amplified the fear. The disbelief was mirrored in others as we shared the diagnosis, Ocular Melanoma, with them. “You can get cancer in your eye?” Why yes, we found out, the not so little tumor detached my husbands retina causing a change in his vision that was all too familiar to us.

You see, my father’s first sign of his grueling battle with cancer was a change in his vision. Now, my Dad did not have Ocular Melanoma, it was rather a freaky coincidence that he had a tumor on his optic nerve that was metastatic cutaneous melanoma. Cutaneous Melanoma is a lot more common, and while biologically different from Ocular melanoma, we knew it meant business because of it falling in the Melanoma world. That was our first clue that we had an ensuing battle in our future.

Just four months post diagnosis; we attended an Ocular Melanoma Foundation conference (EANA). It was there that the importance of community blossomed for me. Having others who have gone through exactly what you did is cathartic and I urge others to locate support groups, Facebook groups, or even big or small meet ups to feel the deep connections this allows.

There are two types of community I propose you seek, one of similar cancer diagnosis/treatment, and another of people that are a similar age or in a similar life stage. These two types will keep you grounded and able to reach out when you need an ear. At EANA, I heard my husband talking to another patient stating that he hates when people ask him, “How is your eye?”. The other responded, "I know, its not like a breast cancer survivor is asked, 'How’s your Boobs?' Or someone battling colon cancer how their colon is." For the record, his vision is forever changed, and if anything, slowly declined to almost nothing but the constant reminder anytime his eyes were open that he has cancer. I assume this is much like scars other survivors glean after their treatments, only his scar invisible to us outsiders, but always present for him.

Can I just say the conversations I heard my husband have on a regular basis opened my eyes to the narrow view people have of this scary, rare, and all too deadly cancer. Some of you may understand that a lack of awareness brings about a lot of misconceptions. Like other cancers, there is a treatment for the primary location, or where the cancer began and then there is a protocol for watching for distant metastasis. Some cancers you go into remission after 5-years NED (No evidence of Disease). After the rather quick treatment needed to kill off the cancerous form in my husband’s eye, people assumed he was "cured." They acted like he dodged a bullet, or got over the flu.

Cancer was erased from many people’s head because he treated it. What those individuals neglected to realize is for us, there is no remission and if it spreads, there is no cure, only life extending treatments. They also seemed to forget the genetic testing that put us in the highest risk category for its ugliness to spread. It was easy for others to get back to normal, but we learned our new normal was scanxiety, ups and downs, and I noticed Survivors guilt, too. Survivors guilt is guilt someone feels who has made it past their primary treatment, or someone whose treatment wasn’t as harsh as others, and even those who defy “odds” and live, when others they knew aren’t as lucky. My husband had this bad when it came to peers he met at a different conference. He felt bad that his radiation lasted just one week, and the tumor was dead. I had to remind him, and now you, that everyone’s battles are different and even if one seems easier than the other, none of them are easy, not one of them is lesser.

The “odds” I intentionally placed in air quotes shouldn’t be held as the be-all and end-all. The odds, or prognosis, given or easily found with a quick Google search are just statistics that we, as scientific beings, calculate to gain a better understanding of possible outcomes. Statistics are results that have been tested using the scientific method and are often outdated due to the length of time it takes to collect data, process, analyze, and report out. Statistics also require multiple research studies that replicate the results to prove the information as fact, which, if you have a rare disease, can be mighty time consuming and expensive. These are both things that are scarce in the orphan disease world.

Here is your reminder to take statistics with a grain of salt; they are ever changing, and can’t incorporate all of those moving pieces to predict an individual’s future. I mean if they could, wouldn’t that just mean that we have some amazing clairvoyants in our midsts. So please, use statistics to guide you on your quest for the best treatment, best team of doctors, or the best possible path for you to take, but don’t let those numbers squash your fight. Hope is the best defense. Align yourself with others who are ready to fight with you by holding hope for a cure, a better treatment, and those who are actively joining you in the search for these things.

I’ve learned in our strong community of OM warriors we have some of the most intelligent and well-read patients and caregivers. I’m certain that each cancers community has its layman experts to support others on the battlefield. They have done research of the specialists and teams of doctors best equipped to treat you. They share the results they had with specific treatments.They share contact information. They share HOPE. One amazing survivor, Sue Apito, who was diagnosed with metastasis at a similar time to my husband, has redefined NED for those with stage IV, terminal cancer, like Metastatic Ocular Melanoma, to mean "No Expiration Date". So live without expiration. Keep researching clinical trials, keep questioning your doctors, keep reading experiences of those before you or with you. Hold hope.

Battling cancer is not just the fight against the invading cells that cause havoc inside, but also the battle against misunderstandings of your loved ones, misconceptions about your disease, the daunting tasks of best choices for your care and your team of doctors, and the battle to build a new community with individuals who may understand you better then your best friend from grade school. So make connections, spread awareness, do your research, and mainly, don’t ever give up hope.

What is your experience with building hope and connections throughout cancer? Share your story in the comments below.

Photo courtesy of author.