I hear this question about once a week. Usually it's from well meaning people, who have no intention to be hurtful. Other times, it's from people who haven't seen me in a while and are just catching up with me now.
Either way, once they hear that I finished treatment, the question becomes "What do you do now?"
I understand the curiosity that comes with that, and I guess the time has come to internalize that and really figure out what it is that I DO everyday.
I suppose I should start with the obvious.
And when I say 'obvious' - I realize this part is only obvious to me, and not everyone else.
But, the obvious answer is I am NOT finished treatment yet.
As happy as I am that I survived this disease, I am not out of the woods quite yet. I am still on chemotherapy and will be for the next 5 years. FIVE YEARS I will be on chemo. This magic little chemo pill helps me keep the cancer from coming back (Hopefully) but in the process it makes me moody, tired, gives me headaches, makes me sick, hurts my joints and bones, keeps me awake at night with insomnia and puts me in menopause (and all the wonderful things that go with that)
Honestly, some days, I just try to make it through the day.
I may look okay, but I am far from feeling okay.
The second thing I want to point out is that I still have a handful of medical appointments each week still - be it for the oncology ward, the physio therapist or the support meetings. I am constantly surrounded by medical personnel.
This makes it kind of hard to 'forget' about cancer.
I still take (many) pills/injections/immune boosters every day so that my body can function the way it's supposed to.
At the appointed time my iPhone rings with my alarm.
Just the other day I was out looking at some jeans, and my 11 am alarm rang "Take Tamoxifen" it says (I just looked at the sales lady and said 'oh, it's just my chemo alarm - do you have these in size 4?')
I am learning to live with it, but that doesn't make it normal.
Before I go to sleep every night, I pray that my cancer will not come back. The first thing I do when I wake up, I pray that my cancer will not come back. Even though to my oncologist I am 'in remission' - to me, it feels like I am always waiting for something bad to happen again.
It's a terrible way to live, and I hope that one day cancer will not be the first and last thing on my mind.
Time will heal that.
I nap during the day most days, because my body is tired. (And this is not the kind of tired that you can sleep and be rested) I feel fatigued, deep inside my bones.
My legs feel heavy, so do my arms.
So I nap.
Once or twice, when people hear this they say 'must be nice to nap during the day' - again, a simple comment, but such a slap in the face. Nothing about this entire experience is 'nice'.
Not even the napping.
I would rather be working and living how I was before than be off on disability.
But that is not my reality and I try to make the best of it.
On good days, I see my BFF who is also off work on maternity leave, we meet for lunch. Or I go have coffee with some other friends who are also 'lucky enough' to be off on disability because they too, have cancer. We meet and talk and understand each other.
The other day, I went to a breast cancer support group with my friend Shonna. She has cancer too. We were there about 2 hours, and as we left she whispered to me ' Are you coming back?' and I responded with a 'HELL NO'. You see, this group - as good as it was, was made up a bunch of older ladies (60s or so) and so their needs/concerns/fears didn't match mine. Breast cancer is supposed to happen to 'older' ladies, but everywhere I look I see women my age who are going through it. Women like me, faced with their own mortality and have babies to raise at home.
It's not supposed to be this way.
So, that night Shonna and I decided that it was time to start our own breast cancer support group. For women who were diagnosed under the age of 40. Sadly, there are more than enough (in my small town) to fill a room. There are 3 of us that are meeting regularly and hopefully as the group takes off, there will be more.
This may seem so un-interesting to anyone else, but it's my entire life line. I may not have cancer anymore, but the 'relationship' I have with cancer is everlasting. It changed who I was.
I feel that I've been given another shot at life. A second chance. So I am bound and determined to make my life exactly what I've always wanted it to be. I want to make it count. I want to make a difference (sounds corny, right?) I want to write a book. I want to see my kids grow up.
So, the next time someone asks me ' What do you DO everyday?' I may just respond with:
I live.
