Friday, October 28, 2011

What do you DO everyday?

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.


Kelly said...

Could NOT have said it better myself, my lovely friend. LIVE every day.xo

RoseAnn said...

I think your last line sums it up nicely.

It's sad that there are so many who fit the young demographic you describe but I'm glad that you are filling that niche.

Of course, I didn't know you PC (pre-cancer) but what I know of you are the most ALIVE person I've met in a long time!

michele (maryland) said...

You DO make a difference, Girl, to us all.

Dianne Duffy said...

Thank you so much for posting this. I feel the very same way even after three years. I was just recently released form one doctor's care and we talked about how some BC patients go out and run marathons or take on some project or something. She asked what my plans were.

I said I just wanted to get back to living my life. That's all.

Sayre said...

I'm so glad you and Shonna found each other! I am on the outside looking in here - I know I cannot understand how you feel in your body. I've had my own scares so I do understand that particular fear. For now though, I will stand on the sidelines and cheer you on - and hope that I'm never called to join the game.

Knock knock - it's cancer! said...

Kelly - I know you understand. I am so thankful to have met you and Shonna through this experience. I would not wish to have cancer ever, but having the friendships that formed out of it, makes me feel like I am not alone.

RoseAnn - What an awesome thing to say. I love it, thank you :)

Michele - *blushing* You do to me too.

Dianne - Three years - congratulations! I don't know if I can be so ambitious as to go and 'change the world' or anything - that is a lot of pressure to put on anyone ... but I do want to 'just live' and hopefully do so gracefully.

Sayre - while I love you, I hope that you never ever come too close to us - in that regard. The sideline view is often the best view :)

Knock knock - it's cancer! said...

BTW - Roseann - email me (michelle f a r r a n ce at g ma i l dot c o m) I erased Carpe Diem and started something totally different :)

VV said...

This post really hit me and I can't say just yet which part did it, or if it was the sum of all the parts.

"What do you DO everyday?" "I live." So succinct, so powerful, so triumphant considering this past year.

You're right that some things are obvious to you because you're on the inside looking out. We out here have no clue of all the details unless we've gone through it, or helped someone else go through it. I always liked to believe I was well-informed, but until you took us on this journey with you this past year, I really was absolutely clueless.

Maybe you should take all your blog posts and the comments and put together that book. It would serve a valuable purpose and give insight into what cancer is, what it does to the body, to the family, to relationships, and yes, even the things people say, meaning well, but really just stepping in it. I'm a pro at putting my foot in my mouth. I would find this insight and the experiences you've had very helpful in not saying the wrong things to other people I know with cancer.

Then there's that whole 5 years of Chemo.

It's over, right?

No, 5 years of chemo.

Well, it's just a pill, that's nothing after all you've been through.

No, it's poison in my body on a daily basis.

There's so much still going on, so much, we on the outside "don't get." You do need to write that book.

All the crap that comes with that magic pill and the surgery. You've been yanked out of the normal experiences a 35 years would have, should have at this time and have been thrust into this other world, no longer with the healthy, unscarred 35 year olds, not lumped in with the older ladies going through chemo, menopause or any of the other things. It's like walking in a parallel universe, able to look over into that other world you used to inhabit, that you're now removed from.

Then, the daily reminders, as if the pills and the ills that come with it aren't enough, there are the doctor appointments, the support groups. Being around other people at various stages of the same journey you're on. You must wonder sometimes if you will ever break free from this cancer world you find yourself thrust into. You will. You will.

I love your line: 'oh, it's just my chemo alarm - do you have these in size 4?' That's ranks right up there with your t-shirt - "Yes, they're fake, the real ones tried to kill me."

You have to deal with it and not let it mess with the life you're trying to live. Make it just a passing thought, certainly not the very first and very last thoughts you have each day. You're not there yet, you will be. You will go from the wounded warrior begging God not to let it come back, to being stronger, visualizing each morning and night, it leaving your body, leaving your world, and becoming a part of a past, a world you used to live in.

Okay, I've gone on much farther than I intended. But as I said, so much of this post really struck a chord in me. I think what you have to say will strike a chord in others too, plus, I think it's valuable information we on the outside need.

Praelior said...

I totally get this post--both the sense that cancer treatment is over once you've recovered from mastectomy or that your hair has grown back, and the frustration of being lumped (both medically and socially) into the groups of women who are my mother's age and coping with breast cancer. The one premenopausal group I know of (YSC) is a bit too "everything happens for a reason" and "the pink ribbon is our friend" for me. Where are the down-to-eath/cancer-sucks/I-just-want-my-life-back mid-thirties girls?

Knock knock - it's cancer! said...

VV - that was one of the most thorough comments I have ever received on this blog. (And long, lol)

I actually am flirting with the idea of turning the blog into a book, but perhaps a little more 'general' rather than just my experience. I am working on it. I'll let you know what comes out of that.

Praelior - haha, I couldn't have said it better myself. I guess all those gals are here, with me in Vancouver :)

Conquering Cancer By Living Well said...

These words are PERFECT. I agree - the comments can be a little frustrating, such as:

- What do you do with your time?
- Are you bored?
- Have you ever thought about volunteering? (This one is a prize winner! This person knows my desire to return to work fully, not just part time)
- You're so lucky! Now you're a survivor! (ummm, I have liver cancer, bone cancer, uterus cancer...just how did I survive this?)
I agree, these people mean well. But it can be hurtful. One of my good friends is telling me I should quit work - to sell the house and move into a condo. Am I supposed to get rid of my pets now too? 2 adults, 2 large dogs, one very old, in a condo... this is coming from someone who has a very large double income and doesn't seem to have a clue about budgeting... makes me shake my head, but I realize too, these people with this "advice" are trying to be helpful...but sometimes it hurts! And on another note, I think we should go ahead with that plan of organizing another support group! This post is perfect!

Jen said...

Your comment about your "relationship with cancer is everlasting" -- so true! I am still going through chemo but am already trying to figure out what my life is going to look like after treatment. You do look great BTW - sorry you aren't feeling as great as you look. Love your hair!

Mandi said...

I still don't feel like treatment is over and I don't like the word survivor (maybe I just never will). I am finding this phase of trying to get life back to a normal state much more challenging than most of my treatment. It is good that you are setting up a group, we have a local group for women under 50 that can be a resource when needed. Do what is best for you, don't let people make you feel bad.

Mary xo said...

Amen! It's funny but I just got asked that too the other day, "Now what do you do?" they said.
"Well," I said, "I live my life. And hopefully the breast cancer doesn't come back." That about sums it up, doesn't it?
And your hair looks so nice, can't wait until mine looks like that!!

RoseAnn said...

Thanks for the heads-up, Michelle! I just noticed it disappeared. I'll email as soon as I get home. ;)

nancyspoint said...

Sometimes people make such ridiculous comments and ask ridiculous questions don't they? I so relate to this post. I know exactly what you mean. I still have a lot of appts too. I still take that little white pill. I still have fatigue issues. I have limited range of motion. The list goes on and on. Mostly, I'm not finished with cancer; I never will be because I'm always on the look out and probably always will be. All I can say is this, shrug off the stupid/insensitive comments. And do exactly what you're doing - living YOUR life! And good for you for starting your own support group. Thanks for the great post. said...

I think that is exactly how you should respond and if they question it, just walk away with a smile on your face.. if they dont know you they will never know the real answer my friend.

Because you are living it every day. and dealing with what you have dealt with these last 10 months. You are one brave cookie and I am proud to be your friend even with my weird quirks..

Thomas P said...

Great Post Michelle! You're a wonderful writer, I really hope to read your book one day soon.