From MY to OUR Cancer Journey

I received my ovarian cancer diagnosis in September of 2021.  Notice I said MY ovarian cancer diagnosis.  You see, after the initial news that I had a mass that was “highly suspicious of ovarian cancer,” having those “I never thought I would be having these conversations with my family” conversations, and the subsequent surgery that confirmed the cancer diagnosis, my focus centered on me.  MY recovery from surgery, MY treatment recommendations, MY coping with my diagnosis, MY response to chemotherapy.  Sure, I was peripherally concerned about my husband/caregiver extraordinaire, my adult children and family, but they were, at least initially, a secondary thought. I have never been one to be selfish, and on the high-maintenance scale, I score sadly on the low end.   But this was different.  This time, I felt like it was okay to be selfish and okay to place my focus on me because this was MY cancer journey.  Except I was wrong.  This really wasn’t just MY cancer and MY journey at all.  This was a cancer journey that rippled out, like the crescendo of the waves in the ocean that eventually makes its way to a sometimes unexpected shore.

My first wake-up call was when I found out that my dear friend was diagnosed with the same type of ovarian cancer that I had, just weeks before me.  That changed MY cancer journey to OUR cancer journey.  We were more than 700 miles apart, but often had chemotherapy on the same day.  We would text each other throughout the day, reporting to each other bloodwork results, hydration status, and “Yay, finished this round” status.  We would text almost daily about side effect the first week after chemo, knowing that if we didn’t hear from the other, they were struggling.   We shared shaved head pictures, and crazy hair growth pictures.  We shared scanxiety and celebrated the shock that we both felt as we both received the coveted “No Evidence of Disease” (NED) results.  We made plans to get together when we both felt a little better.

Very shortly thereafter, OUR journey diverged.  I continued to make slow and steady progress towards recovery, even though at times it felt like it was at a snail’s pace.  She was not as lucky.  Complication after complication arose as well as multiple recurrences.  I simultaneously felt so grateful for my cancer status, so guilty that I was the one that responded to treatment while she was struggling to find something that would work, and so fearful that at any moment my NED status could change to a recurrence.  But this was still OUR journey.  She told me that my improvement and recovery gave her motivation and inspiration so that she didn’t lose hope.  I felt every up and down as she got good news and then bad.  I rode the wave with her until it finally rippled to shore.  Sadly, her part of OUR journey changed when her journey ended.  Even though I will carry her memory with me, she will always be a missing piece of this crazy cancer thing for me.  OUR journey.

She was not the only one that made this cancer journey a joint effort.  You see, every three weeks during treatment, and every month since chemotherapy ended 16 months ago, I go into the chemo room at my oncologist’s office.  The chemo room is a common room where you receive treatment with other women who are also undergoing treatment.  At first, I really didn’t like the idea of this open room.  I am an introvert, private, and I felt like I needed my own separate space.  But I really didn’t know what I needed.

See, my treatment was during COVID, and you were not allowed to bring a family member with you while you received chemotherapy.  So you were in this room, for me it was for about 6 or 7 hours for each round, with these other wonderful ladies of all ages.  We were each other’s support systems that day.  We would alert the nurse if one of the ladies was not feeling well or encourage someone that getting a port was not so bad, that it really made life easier.  We weren’t always on the same chemo schedule, so sometimes there were different ladies there each time, sometimes the same, but we shared a common bond.  We shared hopes, dreams, disappointments, shocks at NEDs, and stories.  It was the non-privacy that I didn’t know I needed.  OUR journey.

One day a young woman arrived at the chemo room.  She spoke Spanish, not English.  I spoke English, not Spanish.  Yet our eyes locked, we exchanged smiles and all at once developed a knowing, collective bond.  For the next few rounds when she arrived for chemo she would scan the room, see me, smile, and sit near me.  We provided comfort to each other through a silent understanding.  I think about her still today, and I wonder and hope that her treatment was successful.  OUR journey.

After my surgery, besides being informed of my cancer diagnosis, I was also informed that I had an inherited genetic mutation that increased my risk of certain cancers.  And no, it was not the frequently known BRCA mutation.  Although the BRCA is the most widely known inherited genetic mutation, it is not the only known inherited genetic mutation.  I was aware that many men on my father’s side of the family had been diagnosed with prostate cancer, so I assumed there was an inherited genetic link there.  I had no idea that an inherited genetic link to prostate cancer, a male disease, could also predispose me, a female, to ovarian cancer! Now, in addition to that cancer conversation that I had to have with my family, I also had to inform my children and extended family about this possible inherited genetic mutation and recommend genetic counseling and genetic testing.  My daughter took advantage of the genetic counseling, got tested and found that she also carries the mutation.  In May of 2023 she took the brave step to have surgery to reduce her cancer risk and I was able to change my role from cancer survivor to caregiver.  OUR journey.

Epic Experience provided yet another opportunity to expand MY cancer journey.  Through camp I met 10 incredibly strong and brave fellow cancer survivors and the wonderful staff and volunteers who have either been through cancer or have been touched by cancer. Even though my fellow survivors had different cancers and we were at different stages in our treatment journey, through the sharing of stories, triumphs, struggles, and laughter, a bond was created.  I now also ride the wave of their ups and downs, recurrences, remissions, and milestones, and I have other cancer survivors with whom I can rely on, learn from, celebrate with, and support.  OUR journey.

Of course MY cancer journey included my amazing rock, my husband, and many dear and loved family members and friends that helped me get to where I am today.  I am truly grateful to everyone who supported me. I realized during treatment that it was never just MY journey, but always OUR journey.  Because when you love and care for someone, even though you may not be living through the same experiences, you also ride the ups and downs of their treatment.  As a cancer survivor, your journey is OUR journey, because we are all trying to navigate the same crazy wave of treatment, remission, possible recurrence, scanxiety, cure, and we all want the same thing for each other.  So, despite what we may think, it is not MY journey.  It never was.  It is always OUR collective cancer journey.  

-Donna M aka Peaches