"They found a large mass."
PART ONE: MY DIAGNOSIS
I'm sure you've had a moment or two in your life where you thought: this isn't real, this cannot be happening to me; not now and definitely not me. In a way all of 2020 has felt like that for all of us; we felt this when the pandemic hit and our lives were upended overnight. In those surreal moments all that seems to exist are disbelief and uncertainty.
Four weeks ago, I was bodybuilding, road cycling, and hiking Mount Rainier with Laura. Three weeks ago, I was alone in the ER at 2:00am due to pandemic restrictions with splitting headaches and chest pain being told I had a larger than a grapefruit sized tumor in my chest occluding veins, encasing arteries, and pushing organs. Calling Laura, all I could manage to get out was, "They found a large mass." Two weeks ago, I was getting stabbed in the chest with a large needle to pull tissue cores and undergoing additional battery of scans and tests at Mayo Clinic to find out what it was. And one week ago, I learned it was a seminoma, a rare form of testicular cancer.
Disbelief and uncertainty, that has been my and Laura’s realm of existence.
The emotional roller-coaster has been nothing short of nauseating. Like an unbuckled passenger on a brake-less ride, it's been terrifying, vomit-inducing whiplash, straddled with dizzying anxiety to extreme heights of high hopes and deep lows. From a mountain top to a hospital bed. With no way to stop it, all that has existed has been reluctant acceptance coupled with disbelief. I imagine this is how all those that are diagnosed with cancer feel in some capacity. I'm certain the 5% of diagnosed young adults (20-39), 80,000 of us, feel this as it upends everything in our lives, halts our careers, and blurs our futures.
The tunnel vision that it initially created had been unsettling as my mind raced through possibilities of what it could be and how much time I had left given it's size and location. While also wondering how this could be when I've always felt like I was one of the fittest and healthiest people out there. My mind cycled through endless scenarios as though I was Elizabeth playing chess in Queen's Gambit, both trying to figure out the possible outcomes and how or if I would beat it. Except it wasn't a game or a fun ride. Nevertheless, I've consciously hoped that the odds were in my favor.
Something happened in all of our hope and prayer, a more favorable odds. However, it's been a strange reality feeling simultaneously unsettled and joyful. On one hand, unsettled that I have cancer but grateful that given the list of possible ones due to its size and location the odds were with me and it was a seminoma - a treatable/cureable cancer that has been growing for years. I remember my doctor calling and telling me the biopsy results, I was hanging onto every word and hoping. When he said it was treatable, my mind almost relaxed for an instant; it ignored all the forthcoming side effects, weeks of punishing treatments, financial and logistical challenges, and complete change to our routine and way of life all because I had a chance in this fight.
Despite the favored odds, this has been an unfamiliar territory riddled with uncertainty. It has opened my eyes to the many challenges young adults with cancer face. Endless number of questions from what, when, and where to get treatment and what else is there to logistics on finances, work, FMLA, fertility, and life planning. With many of those things still up in the air. In all of our conversations, I think Laura succinctly captured the essence of what it's like to navigate this as a young adult - one, am I going to live, and two, how am I going to live. Cancer truly doesn't care when or where you are in your life, when it shows up, it shows up blindsiding anyone. There's no real preparation for it.
In the depths of this crisis, Lou has been an enormous mountain of support, care, and love and I'm lucky for that. And I've also been truly grateful for our family, friends, physicians, and community. We've been flooded with an outpouring of thoughts, prayers, energy, and love and from the bottom of our hearts, Laura and I deeply thank you all for that, now and in the future.
As we shared the news, many have asked how they could support us in this journey and it's been a challenge to say exactly how as many things were uncertain. And to be honest, It feels like I've now finally managed to buckle my seat belt and to grip the guardrails to take a second to finally breathe in deep. That breath has finally made us feel like we can share the news publicly along with the kinds of support that would help us the most as a family, which we'll share below. We owe an immense debt of gratitude to family and friends that have been a beacon of light, laughter, and hope during this time.
With much still to come and a decrease in physical symptoms, this has given me the air to share. It's been helpful to do that. I also figured it would explain any future photos of me in a hospital gown instead of gym clothes.
And so, that is my diagnosis and not who I am. I'm still a fitness-loving, adventure-seeking, mountain-climbing young adult that happens to be atypical - aren't we all a bit weird?
PART TWO: SUPPORTING US
As early on as we are in this journey, going through this experience has unearthed the immense number of difficulties young adults (YA) with cancer face. At times seemingly insurmountable, requiring nothing less than a herculean effort to overcome. YA's put their lives on hold, pause their careers, drain their savings, and lose valuable time all the while trying to figure out how to pay for mounting medical expenses and their future. My amazing sister who is a physician and is all too familiar with it put it plainly, "Cancer is expensive."
Quite honestly and not surprising, Laura and I are most consumed by these concerns more than the cancer itself at times. Energy and focus has been on figuring out financial logistics with Lou having to go on unpaid medical leave because of the risk of exposing me while I'm immunocompromised. As family and friends have asked how to best support us with gift cards, meals, flights, and care packages, and while we're grateful for all, the 3 most impactful ways to support Laura and I are:
Support us directly to help with medical and life expenses by clicking here.*
Donate to reputable cancer organizations funding research for underfunded cancers directly in support of us or your loved ones.**
Subscribe to AXLETE blog and share The Atypical Podcast to share our story and journey of being like any other young adults until we were blindsided. (Podcast coming soon).
Emotional support, prayers, love, thoughts, positive energy, and virtual hugs (can't risk getting an infection ) are all enormously welcomed and accepted with gratitude.
In the next update on health and life, I'll share out how this experience has galvanized me to make a positive impact for Young Adult Survivors (YAS) of cancer - the YAS Pledge, The Atypical Podcast, and what is AXLETE and it's mission. I have much to share on this bold vision and with a possible second chance why not dream with ambition.
*We believe in effective altruism, too long to get into it here but I plan on covering it soon. We've been asked about a Gofundme campaign to be setup for us but I have a personal ethical objection to it. More on that later.
**Many of the deadliest cancers receive the least amount of research funding because of stigmatization and embarrassment. If you donate to a cancer organization, I deeply implore you to consider donating to an underfunded cancer to increase survival rate for the future. This is effective altruism and another passion project of mine that goes back a year ago, especially for lung cancer. Again, more on that later but read more here on underfunded cancers if you're interested.
**Finally, if you or someone you know gets the urge to share a "cancer cure" with us, I implore you to not do it. I know it really does work and I just have to watch the video but really, don't do it. We've heard them all from the broccoli diet to CBD cures, especially since Lou and I are professionals in the health and wellness space. Best time to share that cure is with a close friend over some drinks.
If you read this far, personal thank you from us to you. We appreciate you.
With love and gratitude,
Abdi + Laura