In my years after cancer, I experienced several recurrence scares that were so bad and so real, that I thought for certain that my cancer had returned, that I had just lived my last good day, and that I was going to die. This is what's going through our minds when there's a cancer recurrence, real or imagined, captured with the help of breast cancer thriver, Nalie Agustin
An essay looking back on six years of young adult cancer survivorship, and how I finally managed to find peace after testicular cancer. If cancer were to take me now, this is how I would feel, and all that I've done to finally get there.
As I approach six years of cancer survivorship, never has it been more clear to me that cancer is not just a disease of our physical bodies, but a disease of our minds and souls as well. Thus, the argument that many make, is that cancer is not just a matter of eradicating the rogue cells from one's body, but of curing the entire patient.
The National Comprehensive Cancer Network (NCCN) Guidelines for are the bible by which Testicular Cancer patients are treated and managed. The follow-up care recommendations within these guidelines only goes out to 5 years, and even within those 5 years, there's been some significant adjustments to the recommendations over time. It's entirely possible that if you were diagnosed with testicular cancer within the past few years, that you might be able to make some adjustments to your follow-up schedules in favor of fewer scans or appointments, but what do you do after that? It's up to you and can go on a case-by-case basis. Here are some answers.
Experiencing fear on a regular basis comes with the territory of being a cancer survivor. It's a very normal and even healthy part of cancer survivorship, but something that needs to be managed, so here are six tips on how to help cope with and overcome it.
From that of complete darkness and feeling so hopeless, to then progressing so slowly with the smallest rays of hope, life after cancer has blossomed over the years into something truly beautiful and breathtaking.
Every single testicular cancer survivor and their caregivers should be aware of the possibility of low or irregular testosterone levels after cancer, and that no, the other testicle might not necessarily ‘pick up the slack,’ as is commonly believed. It isn’t that simple. Every medical professional should also be aware of this possibility with testicular cancer survivors, especially if they’re symptomatic of hypogonadism.
Life goes on, and the sun will rise and set again for many of us after cancer, but not for all. Survivor's guilt is a very normal part of the cancer survivorship experience. It can be tremendously painful, but is also a huge opportunity for growth in our lives.
As I look back on 5 years of cancer survivorship, I've started to see from a higher level just how much I've evolved every year since cancer. We evolve constantly throughout our lives, perhaps too slowly to notice on a year-to-year basis, but we're always evolving. Having cancer as a young adult is a massive accelerator for that evolution.
By far, the biggest physical challenge I've faced after cancer, is that of chronic fatigue. After months of being poisoned almost to death by harsh chemotherapy drugs, irradiated trying to nuke cancer cells out of existence, or having our bodies ripped apart and then sewn back together, our bodies are just plain tired.
The thorn in the side of every single cancer survivor out there, is that we never really know if our cancers have truly been cured or not. The best status we ever get from our doctors is "NED", no evidence of disease, but this doesn't mean that no disease is present, it simply means that none can be detected. The passage of time without any new evidence of disease is the only way that we ever get to "cured", and that makes for a very challenging waiting game in our years after cancer. Nothing has been more terrifying to me during these years than the fears of recurrence, and every strange pain or irregularity in our bodies brings these fears to life.
Today is a very special day. Not only does today mark the start of Testicular Cancer Awareness Month, but my husband, Nate, and I are also celebrating a huge milestone. He is officially two years cancer free! Considering that the majority of relapses occur in the first two years, this is a moment we have cautiously awaited for the last 731 days. I feel so grateful to TCAF founder, Kim Jones, for the opportunity to write my first blog in support of all past and present testicular cancer patients and caregivers during such a monumental moment in our lives.
I wrote my reflections on reaching 5 years since my cancer diagnosis in advance on my personal blog, "Five Years Ago Today...", so that I'd have something to share on that day, but until that day came, there was no way to know exactly how I'd feel about it. I was shocked at how I felt when I woke up that morning as a newly minted 5 year survivor of cancer, because honestly, it felt like I had just woken up from a terrible dream, and it was wonderful.
Cold weather never bothered me before cancer. My body would just naturally adjust on its own, and all was well. After cancer has been an entirely different story, and as the temperatures drop below 40F, my body just wants to grind to a halt on me.
On at least two occasions when I've mentioned my cancer story to new friends or acquaintances that hadn't known, I've received comments that were just short of dismissive that testicular cancer is an "easy cancer", alluding to the high cure rate. I'll be honest in saying that I haven't been offended by such comments, because I know that short of having been there in some way themselves, it's simply impossible for people to truly know what a cancer diagnosis feels like, nor all that one entails.
A friend lamented about the damage cancer had already done to her, and how it had reshaped her life and robbed her of so much joy despite never having had it. She wondered how someone who actually had cancer could even begin to cope with so much uncertainty.
From painful physical after effects of our treatments and various struggles with our bodies, to the emotional ups and downs during the long periods of surveillance after our cancer fights, most cancer survivors are no strangers to all sorts of pain. There's a type of pain that's not often talked about however, and that's the pain we experience when the nature of our relationships with people in our lives change, as either a direct or indirect result of our cancer experience. This is the story of my deep interpersonal and spiritual struggles after cancer, of trying to make sense of the world again, of trying to get to the bottom of who I really was and what I needed in this world, and all of the bumps and roadblocks along the way.
25 Appointments and Counting... On the eve of my 4 year check-up for cancer, I rather foolishly clicked on a news video link of Virgin Atlantic Flight VS43's emergency landing in Gatwick last December. I've watched emergency landing videos before, but this is just asking for trouble around surveillance appointments, and I should have known better. As the Boeing 747-400 came down without its starboard main landing gear deployed, and with emergency vehicles lining the runway that were prepared for the worst, it was as though all of the collective fear, anxiety, and tension of the passengers on-board that aircraft found a way to channel straight through me. I could relate to this so well, because I know exactly what this feels like, and it's how I had already been feeling at the sub-conscious level. This is what I've been going through for 4 years now, over and over again, as an 'S.O.S.' cancer patient, "stranded on surveillance."
Happy National Cancer Survivors Day! This has always been a good time to take pause and reflect on where I’m at, where I’ve been, and where I should be heading next, as NCSD aligns with my annual mark checkups. (My next follow-up is in two weeks). This year I’m realizing just how much life has changed since cancer entered my life, and how far I’ve come in this journey.
I arrived at work on a seemingly ordinary day on Thursday, May 21st, but found myself unable to think or concentrate at all. I felt a lot of nervous energy and anxiety building, but didn't know why. I had also started having cancer-related nightmares in the previous week, as if to predict something rotten coming. It turned out that this particular day was my last two days of chemotherapy, four years ago, and I remember those days all too well. I was so afraid that the chemo wasn't going to work, wondering if I was still going to die or not, and I was tired of being poisoned almost to death and feeling like complete hell. The only thing that stopped me from ripping off my lines and running away were an extra few doses of Ativan, and its induced haze and false calm. All of these fears and emotions had been buried, but here they were, suddenly coming to the surface four years later. I was right back in that oncology infusion room again as if it were happening now, and I was absolutely terrified.
This is the story of my 4 year long fight to reclaim my body after cancer, from barely being able to walk unassisted and having so many complications, setbacks, and headwinds, to finally punching through and running 30 minute 5Ks, and all that I've learned along the way.
The crazy March weather in the Washington, D.C. area has reminded me that sometimes life is about the contrasts. A foot of snow blanketed the area a few weeks back, followed by nearly spring like warmth just days later. And then, more snow came on the first official day of Spring! Just as with nature, in life and especially with cancer, we see great contrasts as well.
I took advantage of some down time on a business trip this week to read Stuart Scott’s memoir, 'Every Day I Fight'. Like Lance Armstrong’s cancer memoir, ‘It’s Not About the Bike’, that I read when I was first diagnosed with cancer, I piled through this one in a single day, too. I actually didn’t read it just once, I read it twice!
It seems like every few months, a story pops up somewhere where somebody managed to detect their testicular cancer with a pregnancy test. Yes, it's true! Thiscan be done. In a strange coincidence of nature, the hormone called beta human chorionic gonadotropin, or HCG for short, which is emitted from the cells that form the placenta when a woman is pregnant and is what the pregnancy test looks for, can also be emitted by some types of testicular cancer. Since HCG should never be elevated in men except for in a few rare and very specific situations, a positive pregnancy test result in a man is almost a sure sign of testicular cancer!
In February 2015, Steven Petrow published an article in the Washington Post titled "Guys, here’s why it’s not worth testing yourself for a ‘lump’ down there", coming out against testicular self-exams (TSE) after having previously been supportive of them. What's surprising about the article is not just that such a view against testicular self-exams exists, but because Mr. Petrow himself is a twenty years and change survivor of advanced stage testicular cancer. I applaud and congratulate Mr. Petrow on reaching such a milestone. It's something that we cancer survivors take great pride in and stories like his are inspiring to so many of us, but I could not disagree more with his recommendation against TSE. Petrow thinks that it's "smarter" now to keep his hands to himself, but is it really?
On Saturday, February 14th, 2015, Valentine's Day of all the days, I'll mark four years as a cancer survivor. I've learned much about how to truly "survive" cancer in these past few years, and I think just a little about life too, and wanted to mark this occasion by passing along my top four lessons learned in four years of cancer survivorship.