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The End of Treatment Is Not the End of Cancer

by Joanna Montgomery on September 12, 2012 at 9:58 AM

joanna montgomery

Okay, so my last chemo infusion was just about three months ago. A month after that, I underwent a series of scans and tests, and they determined that, at that moment, I had no remaining evidence of disease.

Awesome news, right?

The best for which one could hope. Right?

So, why didn't I feel more relief? Why, two months after receiving this news, am I still not feeling relief?

My hair is coming back, my strength is coming back, my energy is coming back ... I'm feeling more and more like my old self. Yet, in some ways, not at all like my old self.

Now, I'm generally a pretty positive, glass-half-full kind of person, so my lack of enthusiasm about my remission news (I actually wanted to call it "alleged remission" just now, if that tells you what kind of head-space I'm in at the moment) has been bugging me a bit.

For at least the next two years, I'll be having CT scans and bloodwork every three months to determine if I have any new cancer growth. My CA-125 protein level will be monitored, and my chest, abdomen, and pelvic areas will be closely watched for anything that looks like it shouldn't be there.

My first 3-month appointment is in early October, and I'm already feeling anxiety about it. The little devil on my shoulder (actually, she's more of a whiny, Debbie Downer sort that crops up in times of fear, usually in the middle of the night) has been whispering, "Of course your initial scans were negative ... your body was still pumped full of shitloads of chemo drugs ... that doesn't mean the cancer is really gone."

I was starting to feel a little bit crazy and ungrateful. Then I went to see the folks at Vanderbilt-Ingram Cancer Center's REACH for Survivorship Clinic

REACH stands for Research, Education, Advocacy, Care, and Health. And they're essentially there to help us survivors re-assimilate to life post-treatment. Kind of like those programs that help prisoners adjust to life on the outside.

You see, when you're in treatment, there's a great deal of comfort to be found -- at least there was for me -- in being monitored weekly. In having a dedicated care team monitoring your blood, checking your vital signs, asking you questions, actually listening to your thoughts and concerns. Having someone on duty. 

Once you're done with treatment, you're suddenly cut loose. On your own. The guard station abandoned. 

Or at least, I'm now responsible for being my own guard on duty. And I know I'm not as vigilant as a trained professional. And I'm definitely more lazy.

So it turns out that programs like REACH are designed to help with the transition. There are counselors there, as well as nutritionists, nurses, holistic health practitioners, support groups, genetic experts ... a host of people who know exactly what I'm going through and assure me that I'm not crazy or ungrateful.

Who knew that it's normal to feel like you still have cancer even though you're told that you no longer do ... that it's going to crop back up at any moment?

Who knew that most recent cancer patients have anxiety about going back to work after being on extended medical leave?

Who knew that the side effects I continue to experience -- swelling, numbness, joint pain, stiffness, fatigue -- are all normal and actually often worsen post-treatment before getting better, IF they get better?

And that not only is it normal to worry about my child and other family members getting cancer, there is testing available to address these concerns?

I met with a very kind and compassionate social worker named Ali who put me at ease almost instantly. I unloaded all of my fears and concerns onto her, and nothing I said surprised her. It was clear that everything I was saying was very common and expected.

And when Ali said, "The end of treatment is not the end of cancer," I started to cry.

I'm not crazy, nor am I ungrateful. This is all just part of the process, and it's a life-long process. And apparently Cancer PTSD is real.

I am no longer the same person that I was pre-cancer, and -- in many ways -- I am so very thankful for this.

I have friends who are celebrating their "cancer-versaries" with such joy, and I understand why now more than ever.

Every day, month and year that passes without a recurrence is a gift. And we just have to live each moment in the meantime with as much joy and gratitude as we can.

And we can also fight. Fight to raise awareness about early detection. Fight to raise money for a cure.

I was so moved to see so many celebrities and others come together to help raise more than $81 million in the recent Stand Up to Cancer event co-founded by anti-cancer advocate Katie Couric.

Can you imagine a world without cancer?

I sure hope that I see it in my lifetime. And if not in mine, then in my daughter's. 

It can happen.

 

Images via Brooke Kelly. Framed photo in second image via Erica Montgomery.

Filed Under: cancer

Comments

8
  • Todd...
    -- Facebook comment from

    Todd Vrancic

    September 12, 2012 at 12:01 PM

    Why would you be the same person you were before you were diagnosed?  That's a life-altering experience.  It is not ungrateful to feel fear and uncertainty at a transition point in treatment, it is HUMAN.  You and your family continue to be in my and my family's thoughts.


  • Michelle
    -- Nonmember comment from

    Michelle

    September 12, 2012 at 12:12 PM
    That beautiful baby girl of yours is reason enough to celebrate. I pray I never have to go through what you did with cancer, but I have experienced it through family members and my grandmother once told me never to get swallowed up in the mind games of disease. Keep your positive focus, Joanna, if for no one else than your daughter :) My prayers go out to you for a healthy future :)
  • Meg...
    -- Facebook comment from

    Meg LeRoy Schlagenhauf

    September 12, 2012 at 12:34 PM

    While it's not the same thing, I suffer from bipolar disorder (II) and I felt the same way when I hit a stable mood period earlier this summer.  Part of me is elated that after years of treatment we seem to have figured out the magical balance of medication, vitamin supplements and therapy that keeps me in a good space.  Part of me doesn't dare believe that this will last and is waiting for a relapse.  It's hard to simply enjoy it. 

    I hope your scans continue to be clear and that cancer-free becomes your new normal. :)


  • Gary...
    -- Facebook comment from

    Gary Guss

    September 13, 2012 at 12:33 AM
    Hang in there its 6 years for me and its still upsetting
  • Steven
    -- Nonmember comment from

    Steven

    September 16, 2012 at 3:55 PM
    I am not much for this type of format but it is clear that it touches and effects folks. I just wanted to say how happy I a, for you and your family. Your husband sounds amazing and perhaps I will get to meet him some day. I think now you should write for real--like southern gothic or some other style--but write.

    I did get to meet your beautiful daughter at vixtress's house this spring. A treat indeed.

    Lastly, exhale. You deserve it.

    Steven B.
  • Margie
    -- Nonmember comment from

    Margie

    September 17, 2012 at 2:34 PM
    Hi my name is margie im coming up on 2yrs since my last chemo treatment. i am still having side affects. i am always worried about the cancer coming back with a vengence. im going to keep fighting for i have loved ones i have to live for like u. i have a handicapped son who counts on me he also has seizures everyday. i also have a 27 yr old and my 2 grandsons. and my mom who is in poor health! i have a wonderful fiance of 17 yrs who took care of my son and i when i was sick. i pray they will find a cure soon.
  • Vivia...
    -- Facebook comment from

    Vivian Mills Barnes

    September 17, 2012 at 3:00 PM
    Probably anyone who has been through treatment is forever on edge but that edge will soften with more time. I am 9 years out and still finding out new information on my particular cancer (Her2 BC). I have a friend who had stage4 ovarian less than a year ago and we talk frequently for reassurance. You're doing wonderfully, inform yourself and others at every opportunity and enjoy your life.
  • Marge...
    -- Facebook comment from

    Marge Birk

    September 18, 2012 at 8:19 PM
    I just watched you on "Katie" and was touched by your story. I too, am battling stage 3C ovarian cancer-had "debulking" surgery in August and am facing more chemo soon. Right now I feel great, but know that will change with chemo. My husband is wonderful, as is yours. It was my husband that offered to cut my hair off when it was falling out, and he loves the striking bald look, and of course, had the sympathy head shave. He is learning to do laundry and vacuuming and our relationship has strengthened with this battle. Every cloud has its silver lining. Your beautiful Maggie needs you to stay strong and continue to fight your cancer. My husband has made it his mission to learn all he can about ovarian cancer so he can help me beat the odds and be one of the 10% that survives long term. We can't know what lies ahead but your positive energy will stand you in good stead. I'm sharing my battle on my FB page and invite others with ovarian cancer to share.
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