the fear cycle

I saw my oncologist on Tuesday, and got another all clear. So now I have four months of being worry free until my next appointment, and the fear and anxiety kick back into high gear.

I've talked about this before, the fear you live with after being diagnosed with cancer. Even when you are declared NED (no evidence of disease), fear lingers.

When I had my hysterectomy in June, my oncologist said everything was good: the cancer was located only in my cervix, I had no lymph node involvement, I would need no additional treatment. And I was ecstatic. Then the fear kicked in. What if he was wrong? What if he missed something? What if there was cancer in one of the lymph nodes he didn't remove?

I asked all those questions and more at my post op check up. He assured me that they biopsied everything. That they took enough lymph nodes to have a very good representative sample, and that I was just fine. My recurrence rate is 5%. Again, I was thrilled. And then I became incredibly depressed.

I've talked about the depression before too, I know. My therapist, a 20+ year breast cancer survivor, explained to me that it was completely normal. When you are going through treatment, you are doing everything you can possibly do medically to remove the cancer from your body. But you never know when that treatment will end. There are steps: scans, biopsies, surgeries, chemo, radiation, etc. You just never know when you've reached the goal of removing all evidence of cancer from your body. One day your doctor tells you that you're clear, that no further treatment is needed, and it's like hitting a wall. You can't do anything else from a medical standpoint; you just have to hope and pray that your doctor was right, and that cancer doesn't rear it's ugly head again.

Like I said, I have a four month reprieve until my next exam. But in four months, that fear and anxiety will return. That's the fear cycle. Because there is no cure for cancer. Yes, you can go through treatment, be considered NED, and never have another recurrence in your life. Or it can come back.

The only way to fight this fear is with hope and faith. To take joy in the days that I feel good. I have a new appreciation for my body, for it's strength, it's resilience, what it has overcome. I have not always treated my body as the precious vessel that it is. I have caused it harm. I know the fear cycle will continue. But I also know that it will lessen over time. And that every day that I have is precious.

the checkup

Tomorrow I see my oncologist for my regular checkup. These happen every 4 months for the next two years. My last exam was fine, still NED (no evidence of disease). However, I am honestly terrified. I wrote recently about a friend who went through treatment only to find that her cancer has metastasized. While her initial staging was different than mine, it really rocked me. She did everything she had to do, only to find out that it wasn't enough. And this is every cancer patients worst fear.

My cancer was only in my cervix. So for me, if it were to recur, it would come back in the place where my cervix used to be. My oncologist has reassured me that this would be visible during an internal exam, and would obviously show up on the Pap smear. And I have a really low recurrence rate. Does any of this make me feel better? Less anxious? Less terrified?

No.

There is no cure for cancer. The best you can hope for is to be NED. For two years, you see your oncologist every few months for checkups, and if you are still clear after two years, your recurrence rate drops down, and you go every six months. If you're still clear in five years, they consider you to be cancer free.

Sounds great, right? If you haven't had cancer, you wouldn't think so. For me, my mind can become consumed with thoughts of those deadly little cells that might still live in my body. Every twinge, pain, or bad feeling in my body makes my brain scream "CANCER!!!!!!!" It may sound overly dramatic, but that's what cancer does to you: it makes you distrust your own body.

So tomorrow afternoon, I'll go see my oncologist. He'll perform an internal exam and a Pap smear. And God willing, I will still be NED.

support

When I was diagnosed with cervical cancer, the only support group I could find that dealt specifically with gyn cancer was at the hospital where my oncologist has his practice. It meets once a month, right during rush hour. His office is not really far from me from a mileage perspective, but traffic around my area is like rush hour all the time during normal hours, and our gridlock rush hour is from around 3:00 pm to 7:30 pm. So that support group didn't really meet my needs. I was totally in the dark about gyn cancer - having cervical cancer actually taught me how little I actually knew about my reproductive system, despite having been through a private sex ed class, sex ed through my junior high, and actually having a baby. I needed answers, I needed to feel like I wasn't alone, I needed to feel undamaged. Enter the internet, more specifically Facebook.

I joined a few groups dealing with gyn cancer, cervical cancer, gyn cancer awareness products (cancer silver lining - awesome swag), hysterectomy support, and chat groups for women with cancer to get to know each other beyond our diseases. And I made some amazing friends, all across the world.

I can see the skeptical look on your face. I know that you are thinking, "How can you consider these women TRUE friends when you have never met face to face, and will most likely not meet the vast majority of them?" You may not understand, but here it is.

These women are all like me. They are living with a potentially fatal illness, of which there is no cure. Not only that, this isn't the kind of cancer that gets attention, most likely because there is a tie-in to sex, and that makes people uncomfortable. So we feel isolated. Susan G doesn't care about us, Avon isn't spending 3 days walking for us. We have some great celebrity advocates, like Camille Grammar and Mrs. Maryland 2014 Zareana Jess-Huff. But we're not breast cancer. We're not pink. We are teal.

These ladies I have never met, who I will never meet, have touched my life profoundly. We have shared struggles, joys, setbacks, and sorrows. We have mourned those taken too soon. We have cheered declarations of NED. We are up in the middle of the night when someone can't sleep due to anxiety, pain, or just the fucked up reality of having cancer. Because that's why we're awake too.

Yes, it is painful to watch these women in pain from so far away, and not even be able to offer a hug. And it hurts like hell to see a message that someone has gained her wings. But without these groups, and these women, I would never have made it through.

You still may not understand. It may still baffle you that I can love with my whole heart people I probably wouldn't recognize if I passed on the street. And that's fine. Because I know that these women have and will always be my rock, my sounding board, soother of my deepest fears.

Most importantly, they are my teal sisters.

can't stop, won't stop

So January ended, and with it, Cervical Cancer Awareness month. But that doesn't mean the fight is over. For all of those suffering, the fight will not end until there is a cure. Today is World Cancer Day (wear purple in support!). The more we raise our voices, the better our chances are. We need to speak out.

This video is a combination of Cindy Lauper's "True Colors" and "Brave" by Sara Bareilles. It's an incredibly beautiful testament to how hard and strong all those affected by cancer fight. Hoda Kotb brought these two amazing women together, and what resulted was magic. From the Huffington Post:

"Seven years ago, "Today" co-host Hoda Kotb was diagnosed with breast cancer. She knows firsthand the struggles cancer patients go through and more than empathizes with the ones who must do so as children. So to acknowledge the strength of these kids, increase awareness of pediatric cancer and raise money for the American Cancer Society, Kotb created this collaborative project."

This song means a lot to me. I recently found out that a friend's treatment was not successful. Her cancer has metastasized. They do not restage cancer, but if they did, she would be at stage 4 now.

I watched her fight her first round with so much positivity, elegance, and grace that it helped take away my fear. She was always there with encouraging words. This news has rocked her, and she is not quite ready yet to put her game face back on. She is exploring her options. She is dealing with pain, emotional and physical. But she has said that she is not ready yet to go back to being as publicly optimistic as she was before.

This is completely understandable, obviously. And this is the sad truth of this disease - there are no guarantees. A treatment protocol that has worked for 95% of patients still fails 5%. Cancer comes back. Or worse yet, it never leaves.

I want to fight for her. I want to take this disease from her body. I want to heal her. These are things I cannot do. So I just remind myself how damn strong she is, this beautiful friend of mine. How even though the days seem dark now, she is going to rise and fight again, because that is just who she is. I know that soon she'll show us all how big her brave is.

"Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us." ~ Samuel Smiles