National Cancer Survivors Day

Sunday, June 5 is National Cancer Survivors Day.  The American Cancer Society refers to cancer patients as “survivors” as soon as they’re diagnosed with cancer.  No offense to the ACS but I think that’s bull.  How can you be a survivor of something for which you haven’t even begun treatment?  Now that I’m nine and a half months out of chemo and have known I’m in remission for eight and a half months I do consider myself a survivor.  But my long-term survival is very much a question mark because ovarian cancer comes back about 80% of the time, and unfortunately that thought is in my mind just about every day.

I feel very good.  I saw my doctor in April after having a clean CT scan and getting a normal CA125 level.  I’ll see her again in July and every three months thereafter for the first two years.  I made it to the very important six month mark.  The next milestone my doctor wants is for me to go two years cancer free.  Of course the one year anniversary of being in remission is extremely important to me and I’m already thinking about how I want to observe it.

I’m still very wiped out by anything other than a normal day and I sleep a lot.  By “a lot” I mean up to ten hours a night.  I don’t like it.  I used to love sleep and now it takes up too much time.  But if I don’t give my body the amount of sleep it needs I pay for it down the road.  I still have chemo brain and it’s enormously frustrating.  The last time I had a pedicure my pinky toenail fell off.  That’s the second nail I’ve lost because of chemo—and my podiatrist tells me it could just keep on happening.

I just had surgery on my left hand for conditions caused by wear and tear as well as chemo.  I had DeQuervain’s tenosynovitis in my wrist and carpal tunnel syndrome.  In a few weeks I’ll have surgery on my right hand for carpal tunnel and to fix trigger finger in my thumb and ring finger.  It’s yet another reminder of the damage that chemo did.

I’m guessing that you’re thinking “but you’re alive!”  And yes I am and I am so completely grateful for that.  But I’ll never be the same.  I have a lot of really painful memories and the lingering physical reminders of what I’ve been through.  Sometimes I think about the possibility of a recurrence and I get really scared.   I’m so far from finished with all of this.  It’s hard to live with it in my head.  There isn’t a day that goes by without thoughts of ovarian cancer coming to me.  I think that will improve with time.  When I start to feel anxious I do some deep breathing and I feel better. I distract myself with activities.

Former cancer patients don’t usually look like they’ve been sick but they carry a lot of emotional burdens.  To look at me you would never guess that I was so sick last year.  I babysit my grandkids, teach my piano students, and spend time with my family and friends.  I look like any other middle-aged woman.  I’m also torn up emotionally.

But on the bright side, I’ve had some lovely adventures in the past eight months.  My husband and I went to Universal Studios Orlando so I could see The Wizarding World of Harry Potter, which was everything (and more) that I hoped it would be.  I spent my birthday at Disney World and we visited with our niece, her husband and their little boy in Miami.  In January of this year we went to Iceland for eight days.  Our daughter graduated from college in May.

Upcoming adventures include a few days in Chicago.  My husband will be working and I’ll be on vacation.  I’m going to get to hear my friend sing at Blue Chicago.   And in July, in what promises to be the highlight of the entire summer, our daughter is getting married.

So life is continuing and thank God I’m here.  Last year I was afraid I wouldn’t live long enough to see R graduate from college and get married.  Now I’m almost there.  I look forward to being the mother of the bride.  She’s my only daughter and it’s going to be such a special day.  After that I intend to continue being grateful and productive.

If you know a cancer patient, check in with him or her on occasion and see how things are going.  We may look healed on the outside, but the inside may still need a little love!