Thursday, May 26, 2011

Reality Check


This week has been a reality check in my cancer world.  It was bound to happen.  You meet enough other breast cancer survivors in 2 years' time, and eventually the statistics will ring true...for some patients, breast cancer spreads.  Treatments are not always successful. Women with high risk types of breast cancer develop metastatic disease (stage 4).  There is no such thing as stage 5. Two of my breast cancer friends got this terrible news this week.  One has Triple Negative breast cancer and the other (like me), Her2neu positive breast cancer.  One to her bones then liver and the other to her liver. How can this be fair? They did everything right! They did the harsh surgeries...the harsh chemo therapies, and yet still, they are the unlucky ones. I am still in shock and disbelief. This is the news all survivors dread when they finish treatment - when will it come back. When will that scan or test reveal my worst nightmare come true?  And just about the time I begin to believe that I have passed some magical number of months or years that gets me "out of the woods", these women - who were diagnosed about the same time that I was, may not get out.

I met one of these friends last year when I attended a patient advisory board for women diagnosed with Her2neu breast cancer. She was from my home state and ironically she knew my cousin, also diagnosed with breast cancer that year. She, too, had damage to her muscles and back as I did last year, a result from the same surgeries we both had, our sons were the same age, and I followed her blog religiously. We bemoaned the hair loss from chemo together, and through it all I appreciated her humor and irreverent take on cancer, the medical profession's sometimes humorous happenings, and well, now?  I am not laughing. The game just changed. And it could be any one of us! THAT is the reality! None of us ever knows when or IF it WILL be us! It is a cruel reality, especially when you are diagnosed at a relatively young age with a high risk cancer because the myth that if you make it to 5 years, you're 'home free',  no longer stands true.

I've had some well meaning friends tell me I should stop going to the doctor for everything, every ache, every pain, and to just let go of cancer and get on with my life. That the worry and stress of recurrence will rob me of my joy and ability to move on.  But I am reminded that there is still no cure for breast cancer, and for the type that I had, the only promise the drug company makes is that the chemo therapy I received will keep me disease free for "longer".  But even with that, the statistics show that it is only effective 50% of the time. So which side of the fence will I fall on?

The closest thing to a "cure" is early detection, and that goes for initial diagnosis to detection of a metastisis.  Women like Elizabeth Edwards, originally diagnosed in 2004,  lived with metastatic disease for 3 1/2 years (2007-2010).  Some women live even longer than that with the disease, but at what cost? The physical costs of treatment can sometimes bring a woman to eventually decline further therapy, in exchange for a quality of life. How much life? Nobody knows. But then, that brings me back to another reality, none of us, disease or no disease, knows the number of our days.  Only God knows that. Still, I'd like to believe I have a good long number of them left on this Earth!

Listening to my body, taking care of it, being diligent in follow up care, and doctor recommendations, these are all I have in my cancer arsenal right now. So for now, this is what I do. I am still, and always will be, in the "fight". I was often asked during treatment, "Is the chemo working?"  That is a puzzling question. Because the only answer is, "I don't know".  One may wonder why in the world I would go through a treatment that I don't know is working or not. Especially with all of the health risks associated with it?  We all wanted a guarantee. This week's reality check is that there are no guarantees.  My friend had the same, lymph node negative, early staged diagnosis I had, same surgery, same chemo drugs,  but her2Neu doesn't play fair. 

After I returned from my vacation 2 weeks ago, I went to see my primary care doctor for a mole on my back that has been itching for several weeks now.  I can't see the mole, but I can feel if I twist myself into a pretzel! Well, she assured me it was nothing concerning, but sent me to a dermatologist anyway. The dermatologist confirmed the same, but noted a very dark mole on my abdomen that my gyn alerted me to 5 months ago, saying,"keep an eye on this one". The dermatologist wasted no time. Within 5 minutes he biopsied it and I now await those results. I am also having a uterine ultrasound next week to re-examine a non-descript finding discovered on my pelvic MRI in February. They had me wait through a couple of menstrual cycles before this test. Maybe the "finding" will be gone now. So the diligence continues.

 
Yep! I've come out of the closet! My NEW studio!
 This is my busy season for my The Taffy Box business, with Mother's Day, Father's Day, Graduations, Weddings and Babies being born, it is that crazy time of year when I get behind on orders, scramble to catch up each day, and yet still have 60+ orders waiting for me the next day. I can only physically process about 10 orders on a good day (when I have an assistant working with me), so you can see how quickly I can become overwhelmed!  Last year, May and June were my busiest months EVER (or so I thought) and now this year I have more than double the number of orders I did back then. It is now time to move my closet studio into a full sized room. Yeah! No more standing next to the noisy water heater! That's right, in 3 year's time I have moved from the dining room table, to the kitchen counter, to the basement work table, to the water heater closet and now to Kyle's old bedroom.  Fate found me some sturdy discarded large tables by the side of the road last week, and I am setting up "shop" downstairs. Luckily I have my two strapping college aged boys home this week to help me. Life is good!

Monday, May 2, 2011

Celebrate Courage

Me and my niece (3) becoming friends
I've been gone from home 4 days now. I spent the first half  of my vacation in Las Vegas with my sister and nieces and my mom, attending Women Of Faith, a Christian women's conference and inspirational "high" filled with celebrity speakers and big name recording artsists.  It was fantastic!  Flying out to Las Vegas, I sat next to a couple on the plane, and we talked for 2 hours together. Not once did I ever tell them I was a cancer survivor (I know, shocking isn't it?)  Until......the last 5 minutes of flight when the wife asked me about the ring on my finger. That was when I explained that I was a breast cancer survivor. Maybe I am moving forward? Maybe I am just seeing my life as more than just cancer.  I am so much more than cancer. It's not the first thing I would say about myself anymore.

This morning my mom and I flew to California where I will spend a few days with she and my dad, as well as with my brother and wife and their 3 year old. What a precious gem!  Somehow just a handful of days never seems to be enough to make up for the 25 years of separation I have had living away from my own family.  But I am fortunate to be able to enjoy my sister's airline flight priveledges, and to be my own boss and pack up and leave it all behind for a vacation "away". It's been good.  It's been needed.  While in Las Vegas I sat next to a woman at the conference whom I became friends with. She is my sister's co-worker.  As she told me about her life, she explained that her mother had breast cancer and just finished her treatments. I told  her I was also a survivor.  Right then, I slid my new pink rubber ring off my finger and told her to give it to her mom.  It says "Celebrate Courage" on it. Celebrating Courage - Now THAT's what it is all about!

Nycole wearing the pink ring I gave her to give to her mom.