Fear, Living with Uncertainty, and Cancer Recurrence

When you first get diagnosed with cancer, your world stops.  My first thinking, eighteen years ago, was "What will happen to my children if I die?"  I think that's the first question for parents, right?  You have no clue what you're in for.  You're at the mercy of your doctors and health care providers as far as your physical health is concerned...and if you're a believer, you're at God's mercy for the rest.

Somehow, you manage to make it to all your appointments, your surgery, through your recovery, and your treatment.  And then it's over.  It's like you're "sprung" from the prison of your disease.  Sure, you have to go to your follow up appointments with your surgeon, your oncologist, in my case, my plastic surgeon.  But the intense focus and attention that you and everyone else around you has put on your cancer for the past couple months eases up.  And then you're faced with  --- I know I was -- FEAR.   The fear is of recurrence.  Uncertainty. Did they get it all?  Is it really out of my body?  What if they didn't?  What if I have to go through it again?  I remember it being terrifying during my recovery from Round One all those years ago.  A lumpectomy, lymph node dissection, and six weeks of daily radiation treatments left me little time or energy to think about anything else other than my family and surviving. 

I remember making a point to walk every day, eat right, check myself, reading up on all the latest news on breast cancer.  That's how I got started in doing the Avon Walk.  I celebrated my 5 year "cure" by walking 60 miles during the first 3-day they had...from Santa Barbara to Malibu.  My daughter was too young to join me at that time, so I did it on my own.  It was very cleansing for me walking all those miles...just thinking, praying, praising.  I had survived.  But I think that was the beginning of letting go for me.  They said if I could survive 5 years without recurrence, then I was "cured."  I remember walking those painful steps on the third day feeling "alive" albeit with blisters...it just reinforced the fact that I was there.  Crossing the finish line with my "sisters" in celebration.  Seeing the faces of my children at the end - then 6 and 12 - and thinking that I had completed the journey. If I could survive 5 years without recurrence, then I was "cured." That's what I was told.

But that's only cured of recurrence of the SAME cancer.  Not of other cancers.  I had 18 years of great mammograms after my cancer.  And then this year --- it's baaaaackk.  But really, IT was not back.  Because it wasn't  the same cancer.  It was a different cancer, but in the same breast.  And then earlier in the year, in February, I had colon cancer.  Totally unrelated to the breast cancer.

I guess what I'm saying here is this.  Life is uncertain.  And our health is uncertain too.  Yes, there is a chance of recurrence after cancer.  Doctors will talk in statistics.  "You have a 5% chance of recurrence".  "If you survive five years without recurrence, you can consider yourself cured."  We cancer survivors are in this limbo.  We don't really want to know if it's coming back.  What we want to know is that it's NOT coming back.  And no one can tell us that.  In the beginning you live day to day.  Then doctor's appointment to doctor's appointment.  Month to month.  And then you celebrate your wellness anniversaries.  The fear is always inside there.  It's that little apprehension when you're opening up your screening results.  But you can't let that take over.  Remember: I may have cancer; but cancer doesn't have me.

So what do we do then? You just put on your big girl panties and deal with it!  You can't just stop living your life because of the fear.  Life will go on.  So enjoy every single day.  Don't stress over the small stuff (because it's all small stuff).  When you're walking, look around you.  Find the bird's nests in the trees.  Look at the shapes and colors of God's creation, and breathe in the smell of the air.  Go ahead, pick a dandelion and blow!  Launch the seeds!  This is life.  It's happening right now.  Don't miss it because of fear or worry, because honestly, you're missing RIGHT NOW by worrying about the future.  Relax.  Let go of the cancer.  Think good thoughts.  Surround yourself with beauty: nature, music, family, friends, love, laughter, a nice glass of wine, or a good cup of coffee.  Celebrate not just the milestones, but the day to day, ordinary of life.  Take good care of yourself.  Do your best.  Say your prayers.  And believe in your wellness!

About Sharing...

I've been  off work for two weeks now.  Being that I'm not a big TV watcher, this gives me a lot of time to think.  I've been thinking a lot lately about cancer, illness, the beauty of prayer and friendship, blogging, going public, and sharing.  It was really a big decision for me to "go public" with my breast cancer, putting it up here on the blog page.  But I'm really glad that I did it.  It's really been helping me to write down my emotions, thoughts, even just my day to day here on these pages and sharing them. 

I'm usually a pretty private person.  I share, but I share with those that I am super close with:  my family and perhaps one or two close friends.  In the beginning I didn't want to share with everyone, because I was afraid of negativity, suggestions, and the worst part - having to discuss the same thing over and over with various people.  But the reaction I've gotten to going public has been so opposite what I thought:   have gotten only positive feedback.  I've have received encouragement and prayers from readers, and because people are informed of the day-to-day online, my fear of having to repeat the gorey details over and over just hasn't come to fruitition.

Cancer is scary.  As much positivity as you may have, and as much faith as you may have, there is still the reality that you are not in control.  Having faith means that you don't let the fear control you; but it still doesn't mean that you have control of the illness.  And that's difficult....especially for someone who likes to be in control, like me. 

Sharing all this has been helping me.  Telling people has been good.  Sharing.  It's not just sharing on a happy level.  It's sharing on all levels:  sad, discouraged, frightened, joyful, hopeful.  I'm normally a pretty "up" person.  But I do have my days (as you all know).  Sharing lets everyone in on those days too...something that I wouldn't normally share, but something that is definitely part of me as well.  And this is good.  It's good for me to see that  I can share this part of me, and still have people around that encourage me and cheer me on. 

So I thank you all....for letting me share.  For your encouragement, your prayers, your comments (which I love).  Thank you for helping me through all this.  And for sharing my sharing with others.

Happy Mother's Day: It Hurts When I Laugh

It's Mother's Day today, and it's coming to a close.  It was a wonderful day, but different.  I missed going to church with my family.  And I missed being all together with my mom, sister, brother and their families.  But it was a nice day, just different. 

The plan was that Nareg would bring over Thai food and that Ani would make dessert..and we'd sit on the couch, vege and watch Harry Potter.  That's what we did.  The food was great, the dessert was beautiful (and yummy) and the movie was suspenseful.

Throughout the day, while talking to the family, or on the phone with my brother, I caught myself saying "don't make me laugh....it hurts to laugh."  Holding my gut, I'd lean over and brace myself.  But the response was always, "YOU'RE the one telling the joke...you're doing it to yourself."  It made me realize that it really was me.  That despite the major surgery, this terrible disease and all that goes with it, life was still funny, and good...and being with my family was really the best possible medicine ever. 

It was a good day.  A really nice fun day.  I missed my mom who was at my brother & sister in law's house.  And she missed  being with us as well.  But there is always tomorrow.  Tomorrow is also Mother's day, and the next day, and the next day!  She's coming over tomorrow.   I'm so blessed.  Happy Mother's day to all the mom's out there -- especially the Best Mom...My Mom  -- who has taught me so much about love, faith, hope, parenting, prayer and compassion. 

To my wonderful children, Thank You, for blessing me with being your mom.  I love you both so much.  Thank you for a great day...and for the laughter and smiles.

Ani's lemon bars, chocolate chip cookies, and amaretto cream strawberries (and good coffee)

Day 4: The doctor's appointment, the pain pumps, and comments

I had an appointment today to get my pain pumps and dressings.  Pain pumps are these fat grenade-like balls filled with pain meds, and they are sutured into your skin and distribute medication into your incision.  Along with your drains, you carry around a pouch with your pain pumps...and as the meds are used up, the grenades become smaller.  So today the sutures came out and the tubing was pulled out of the incision....and pulled, and pulled and pulled.  It was wild...maybe 15" of tubing X 2 were removed.  Apparently, the tubes have holes in them (kind of like a tiny irrigation hose) and the tubes are laced throughout your incision to give you pain relief.  I do miss the pain relief, but I don't miss carrying them around.

My abdominal incision was unwrapped today as well.  It's healing really well, but I look like Sally from Nightmare before Christmas with a zipper of stiitches going from one hip to the other.  The drains are still doing their thing and will remain in til at least Wednesday.  The breast is bruised but healing fine.  And I'm still really sore and hurting, on pain meds, and unable to do much.

Along with all this, I wanted to write a little about comments.  I know it's really awkward when talking to someone who has cancer, or has undergone surgery because of cancer.  But as difficult as it is, it's also hard on the person.  I talk to family and friends on the phone and I get comments like, "You sound great!  You sound so energetic and happy!  I'm glad you're doing so well."  Or something like that.  I know the caller has good intention.  But the truth is, you don't feel energetic and happy.  You've had a body part that you were born with cut out of you.  It hurts to sit down, stand up, walk, lie down.  Emotionally, you have highs and lows.  You have had cancer.  Is it in the past?  Did they get it all?  Will the pathology report show more in the nodes?  Yes, there's relief because the surgery is behind you.  The worst is over.  But now there's a lot of healing to do...physically and emotionally.  So as encouraging as the comment may seem, it's really not as comforting as intended.

So what do you say?  Just ask, "how are you feeling?" And listen.  Ask if there's anything you can do?  Pick up anything from the market?  Help with anything?  And unless you're immediate family, wait a few weeks before saying you want to come over for a visit, and understand when your idea to visit isn't met with the same enthusiasm.  I know in my case, I can't even get dressed most days, let alone pick up my house.  The idea of having visitors is too much at this point.  Lastly, know that your friend loves you, and appreciates your friendship so much, but this thing that she's going through..it's not always black and white.