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By Katie “Crush” Campbell
She wanted to wait until the timing felt right. She wanted to be settled in her career and give her husband a chance to finish grad school. She wanted two children, one boy and one girl, like she’d grown up with (although she knew she would be happy just as long as they were healthy). She wanted to eat all the right foods, take all the right vitamins, read all the best books. She wanted to wear cute maternity outfits and to be told she was “glowing” even when she felt like an overstuffed whale. She wanted to call her parents and her best friends with the “news” and to hear their excitement. She wanted to commiserate and celebrate with the other moms about all the difficult and exciting milestones. She wanted a natural birth. After years of watching her mother as a midwife she knew that for certain. She wanted to come up with her birth plan knowing full well that it’s nearly impossible to plan something as unpredictable as giving birth. She would definitely breastfeed her baby. She would pick out a name from a list in a notebook she had kept since high school. She would go through the messy miracle of birth and come out the other side a part of an ancient tribe of women who have created life. She had never once questioned wanting all of this, never once doubted her dedication to motherhood. It was a job she knew she was born to do.
And then…she got cancer.
At 30 years old, in the same exact month my husband and I had decided to start trying for a family I was diagnosed with triple negative breast cancer. It was stage 2 but incredibly aggressive. On the day I was diagnosed I told the doctors without a moment’s hesitation that I didn’t care if I kept my breasts I just wanted to save my fertility. I was fortunate enough to have had the opportunity to go through fertility treatments and freeze my embryo before I started chemo, a chance which, tragically, far too many young people are denied. At the time, I reassured myself with the thought that even if chemo destroyed my fertility and the mastectomy took away my chances of breastfeeding I’d still be able to get pregnant someday.
After a year of treatment, including 20 rounds of chemo, a double mastectomy and 5 weeks of radiation I was declared cancer-free and sent on my way. I fully embraced life and adventure during those precious months when I thought I had beaten cancer, including a trip with First Descents rock climbing in Moab (link to post about trip?). But they were short lived. Just four months after treatments ended in January of this year I found a pea sized lump near my clavicle. One biopsy and a PET scan later and my worst fears were confirmed. I was diagnosed with what the doctors assumed was Stage 4 cancer. (The lump near my clavicle made it Stage 3C, but a spot that lit up on the scan in my mediastinum, which they presumed was cancer, made it Stage 4. That spot has not lit up on any subsequent scans.) That’s the stage that comes with labels like “terminal” and “incurable.”
In those first months after my recurrence being a mother was the furthest thing from my mind. All I wanted was to survive the year, to have more time with my husband, to find ways to show the people I loved how much I loved them. In my mind I was planning my own funeral while simultaneously fighting like hell to stick around. After 12 different doctors told me my cancer was chemo-resistant, radiation-resistant, inoperable and didn’t qualify for any available clinical trials I finally found an oncologist with an out-of-the-box approach who began treating me with a very promising, albeit extremely complex, protocol. It was expensive and I’d have to pay for it all out-of-pocket but it was my life and I had basically been given no other option. Nearly nine months later and the treatments appear to be doing their job. My small tumor is shrinking out of existence and growing increasingly dimmer on every scan.
As the cancer faded from my PET scans so it faded from the forefront of my mind. It stopped ruling every waking moment of every day, stopped dictating every decision, every emotion. I finally began to feel safe in my own skin again. I could finally see a future in front of me that stretched out past the next few days, weeks and months. I could breathe again.
It was only then, when I had finally managed to take a few steps back from the fear I’d been holding onto, that I realized an unexpected grief had moved into its place. I hadn’t noticed it until my husband received a call from a friend one day to tell us she was pregnant. The appropriate response would obviously have been joy and excitement for this dear friend of ours. Instead, I fell completely to pieces. I hid away trying to muffle my heaving sobs. It felt as though my heart had been ripped out of my chest. A numbness eventually overtook me followed by depression. My completely disproportionate reaction ultimately had very little to do with my friend and everything to do with the fact that my brain finally had the space to process the unspeakable truth: I would never get to become the mother I was meant to be.
The emotional reality of this truth is incredibly difficult to explain and filled with embarrassment and shame. I have unwieldy and unpredictable reactions to even the most subtle references to pregnancy. When a friend talks about “having kids someday” with an air of nonchalant certainty it can cut like a knife. Being in my early 30’s there is a Facebook pregnancy announcement, what feels like, every day.
My brain seems to have strange rules about whether or not I find a new pregnancy upsetting. If they already had kids before I had cancer I’m not bothered. If they had trouble getting pregnant or had to use some non-traditional route I can handle it. If I rarely see them anymore or we aren’t close it doesn’t faze me (much). But if someone close to me gets knocked up the good old fashioned way it ignites a feeling much deeper than jealousy. It’s an absolutely overwhelming incomprehension of how this is my reality.
That mother that I had planned on being was such a deep part of my identity, deeper even than what I do for a living now and even who I married, because it has always been there for as long as I can remember. It’s like a child who dreams their whole life of being a pilot, envisioning an entire life spent flying through the skies, and arrives for the first day of training to discover their eyesight isn’t good enough. Except every other person in that child’s life and nearly every person they meet and, indeed, most of the people in the world at some point in their lives get to be pilots, whether they wanted to be or not. They all get to fly and become all consumed by it and she has to stay put on the ground. And to make matters worse, in one way or another, nearly everything society values revolves around being able to be a pilot. It’s devastating to be that earth-bound child who wants nothing more than to fly.
On top of my well of grief are lots of other complicated emotions. I feel incredibly guilty for feeling this way. I just want to have joy for my friends’ joy and to celebrate new life unabatedly and be there for them when it gets hard. I feel sad and selfish that I’m not more emotionally available for my pregnant and parenting friends. I also feel guilty for even talking about having kids someday. I am surrounded by young people who don’t know if they will survive the next few months, or years, let alone long enough to have kids. I feel afraid of the day when even closer friends get pregnant and I worry tremendously about my ability to really be there with them and for them in a deep and meaningful way. And I feel deeply excluded from an ever growing community of women in my life who have had an experience I may never get to have. I’m on the outside of the mommy club when all I ever wanted was to be its pack leader.
Emotions aside, the logistics of this truth are also tricky. I know everyone wants to jump to solutions and thanks to technology there are many available to us today. Here are the facts as I understand them. I could adopt but it can be extremely difficult to do so when you have a terminal diagnosis on your medical charts. There are “cancer friendly” adoption agencies and even “cancer friendly” adoption countries but generally it’s even harder than a regular adoption process which is already extremely difficult and most of them require you are cancer free for a certain number of years and I have no idea how long it could take to reach that point. Emotionally I’m also not certain I could bear being viewed as an unfit mother not to mention that fact that, as selfish as it may seem, I would still like the chance to have my own biological children if at all possible.
Even though my fertility seems to be shot by the tremendous amount of chemo my body sustained I could still theoretically get pregnant with my frozen embryo. However, even if the cancer disappeared tomorrow I’d still need to be on preventative treatments for years to come, possibly for the rest of my life, and I can’t get pregnant while I’m on them. I just don’t know if I’ll ever feel safe enough to go off treatments considering how intensely aggressive this cancer has proven itself to be. And despite the lack of statistics on the link between pregnancy and recurrence I’ve worked so hard to create some balance in my body and nothing throws that off like pregnancy. Would I be willing to risk my life further just as I am bringing a new one into the world? I’ve found it an impossible question to answer.
Then there is surrogacy. While this option would still leave me without the experience of pregnancy like adoption, unlike adoption I may still be able to have my own children with my own embryo. The main obstacle in this case is primarily financial. We already spend about one whole salary on my treatments each year and hiring a surrogate costs at least that much. It’s incredibly difficult for me to imagine a day when we would be able to afford this option but it is definitely the most hopeful one available and the one that I cling to with the most optimism.
When my heart first broke over my new reality I was determined to come to terms with never getting to be a mother. There were too many unknowns, too many miracles that stood between me and motherhood to get my hopes up. But that sunk me into a deep depression and I realized that this life that I have been working so hard to save didn’t really have meaning if I didn’t get to become a mother someday. So I decided to do what I have become really good at doing over the last few years: fight. If I am capable of fighting off death surely I can find a way to fight for a new life. And like everything with cancer, I know I will not have to do it alone.
If there is one thing that cancer has taught me it’s that I am utterly and completely dependent on the people and communities around me. I wouldn’t be here today if my friends and family hadn’t cared for me throughout my first round of treatments and then raised money to help us cover the cost of my current treatments. I wouldn’t be here if it weren’t for brilliant scientists, courageous doctors and dedicated healers. The thought that someone, whether she is a stranger or a friend, might someday carry my child for me fills me up with such a tremendous gratitude for the generosity of the human spirit that it leaves me speechless. I have no idea how or when it will happen but I will be a mother someday. And I’ll tell my children that not only did their mother fight to save her own life but she fought like hell to create theirs.
KATIE (CRUSH) CAMPBELL IS ORIGINALLY FROM MICHIGAN AND CURRENTLY LIVES WITH HER PARTNER, HER DOG AND HER CAT IN WASHINGTON, DC. BY DAY SHE WORKS ON INTERNATIONAL FOOD POLICY AT ACTIONAID USA WHICH GIVES HER THE OPPORTUNITY TO TRAVEL ALL OVER THE WORLD. BY NIGHT AND ON THE WEEKENDS CRUSH CAN BE FOUND IN HER LOCAL CLIMBING GYM, BIKING, HIKING OR CAMPING WITH FRIENDS, PLAYING AROUND WITH ONE OF HER MANY CAMERAS OR WHIPPING UP A DELICIOUS VEGAN MEAL. FOLLOW CRUSH ON HER OWN BLOG AT www.katiecrushescancer.com.