Fears of Recurrence of Breast Cancer
Fears of recurrence in breast cancer are palpable for anyone who has had it and we all handle it differently. So as someone who has faced those fears because I have had a recurrence I’d like to address my fears and how I dealt with them.
As an educator for many years, I have seen the differences in personalities both in students and parents when it comes to handling what is seemingly the simplest of fears. What is catastrophic to one is barely a blip on the radar to another.
Herein lies the explanation of how anyone handles breast cancer whether it is a first diagnosis, a second diagnosis or living with the known fact that you have metastatic, treatable but in curable, cancer. I would never look at someone and say, “Pull up your big girl pants and get on with it!” That, indeed, is a counterproductive statement. There are those in life who are simply more fragile than others and those differences must not be judged or become fodder for accusations that we don’t always appreciate the circumstances behind.
“How Do You Always Stay Positive?”
Friends, relatives and family who have so generously supported me throughout both of my breast cancer diagnoses have asked me that question while waiting on results from diagnostic testing and scans, five surgeries, treatment; the list goes on. I have often responded with this answer.
I am blessed. I am simply blessed and it is a gift that has been given me in how I deal with this breast cancer chaos. I will never take that gift for granted and will always be grateful. It is a combination of my personality, my upbringing, who I choose to surround myself with, my insatiable appetite for knowledge and a sprinkling of spirituality and faith.
The reality is I am not always positive. I’m human. I cowered when I got a first glance of myself in the mirror after losing all my hair to chemo in 2002. I cried, curled up in a ball and lay in my bed without eating for a day while I sorted through the news of considering chemo for the second time in 2014. I anguished over the what-if’s of a full day of surgery to rebuild my breasts after a double mastectomy. I’ve yelled at my husband when I thought he didn’t understand what I was going through. I’ve cancelled social invites when my self-confidence was diminished from my mastectomy and I didn’t feel I looked feminine in anything I put on. True confessions from the gal who feels she is blessed with a positive attitude, most of the time, that is. My favorite mantra has always been, “Cry ‘til you’re dry!”
Solutions? I think not. Suggestions? Absolutely!
To tell someone that there is a solution for dealing with the fear of recurrence is a bit silly in my humble opinion. Can I give you suggestions and tell you how I’ve handled it? Of course! Then, you can assess your own situation and use what suggestions work for you. Let me be clear; the fear does not go away. It is how you handle it that defines your life and who you are.
Exercise ~ A Prescription for the Body and Soul!
The first time I had cancer the very best thing I did for myself was get back to the gym. However, I didn’t do that for the entire year from diagnosis through treatment. I was so sick during my chemotherapy treatments that taking the laundry out of the dryer and walking back out to my living room to fold it simply wore me out. I really wish during my treatments that I would have gone to the cancer center, which at the time was MD Anderson, and taken part in wellness activities. They would have been under the supervision of trained cancer professionals. I went into my first diagnosis a fit, strong woman but I let chemo get the best of me. My white and red blood cells bottomed-out and I ended up in hospital for three long, miserable days trying to get them back to normal. The walls of the hospital were a lovelier shade of gray than I was! I will never forget my oncologist walking into my hospital room telling me, “If we don’t get you onProcrit and Nuepogen the chemo is going to kill you.” That statement made me sit up in bed!
I got through eighteen weeks of FAC chemo:
5-FU: Yea, let’s not go there with those last two letters after the number 5!
Adriamycin: Can you say “cardiac toxicity” or AKA the “red devil”?
Cytoxan: My new nickname, “Pukey McGhee!” This is not a weight loss system I recommend.
Fear! Will it come back?
I finished six weeks of daily radiation and began taking Tamoxifen. But soon after I completed my last radiation I began the worrisome fear that so many get. I’m done with everything I was supposed to do to fight this cancer. Fear! Will it come back? The fear was palpable. My first thought was that I should really try to get back to work. But I knew the most important thing I needed to do was get my body back. One year of treatment and putting exercise on the back burner had set me back in a surprising way and I felt it when I went back to the gym. But I went back and I kept at it and it worked!
That’s my best suggestion. Treatments can be a reality bitch slap in the face but under medical supervision, you can work to stay strong during treatments. And a side note, that was 13 years ago. Protocols have changed and dealing with side effects can be more manageable now. I just don’t think I was as proactive as I could have been so learn from those who have had lessons of their own. Stay active and exercise as your body and health will allow. To this day I have held on to that personal life’s lesson.
I remember walking the halls the five days I was in hospital after my breast reconstruction in December of 2014. The nurses would smile at me as I finished one lap on the floor. I would do one more and they would smile again saying, “Great work, lap #2”. I’d circle again and they’d look at me with amazement and ask if I was trying to set a land speed record. Going into breast reconstruction healthy certainly helped with recovering more quickly.
Find Your Passion
The other suggestion I have in “fighting the fear” of recurrence is to find your passion. That can encompass a wide variety of activities. It could be cooking, running, writing, art, singing, dancing. Discover and find something that really makes you feel alive. If it is an activity that fuels you to do it again, that makes you happy, that brings you joy, find it, embrace it and nurture it.
My passion has and always will be education; Once a teacher always a teacher. My second occurrence of cancer and onto my road to reconstruction was simply a means for me to continue being an educator. I didn’t want to be in that “cancer club” the first time. I didn’t go to any support groups, and obviously didn’t keep exercising. I just “took it up the arse” as the saying goes and got through it. I was the “bring it on and let’s get this over with gal” but sat rather complacently on the side lines while that happened. That all changed with diagnosis #2.
It doesn’t go away so I keep it at bay!
I truthfully was angry about it the second time. So I grabbed this beast by the horns. I sneered it in the face, drew my sword and have been defending myself against the fear ever since. By educating myself about it and sharing that knowledge with others through various venues it has given me personal power and courage to keep the fear at bay.
The Teacher and her Educators
I engage in various forms of Social Media to spread the word about getting on with life after a second diagnosis and on to reconstruction. I never imagined in my wildest dreams that I would be getting “tweets” in the middle of the night from plastic surgeons in Europe, much less having discussions with one in particular about the “perfect breast shape”. It wasn’t on my radar a year ago that I would be in a journal club learning and sharing valuable information about genetic studies with a scholarly and well informed nurse and advocate. Never did I think that I’d meetfriends through social media that would fly down to attend, present, and help out with my first ever Breast Reconstruction Awareness Day. You could have knocked me over with a feather if you told me a year ago that two world renowned plastic surgeons, one of them being my own reconstructive surgeon, would collaborate with me in writing a paper about a tool that plastic surgeons use to achieve an aesthetically pleasing breast after breast reconstruction. There were other plastic surgeons. Plastic surgeons who have embraced shared decision making by engaging in their own education and outreach through social media to inform each other and their patients. Plastic surgeons who I share evidence-based medicine with and yes, a few fun pictures! It’s building that community with those who are interested in the best medical practices patients can find that have taught me so much.
Travel and the amazing women I have met along the way.
A year ago today, as I write this blog, I hadn’t had my reconstruction surgery yet. I was still a double amputee. Today I am rebuilt. I can pay it forward for other women. I could go on and on about the amazing women I have met who are considering reconstruction or have already been through it. I have discussed with them everything they have been through, their fears, their recovery and their on-going treatments. They are paramount in satisfying my thirst to continue this passion of educating and informing.
The fear never goes away but I continue to fight my fear by embracing a passion that was waiting to rise above its own ashes. Fear is real, fear can be overwhelming but find your passion andfight the fear in the best manner you can!
And so I leave you with a picture from a page out of one of my favorite books that I have had for many years, The Prophet by Kahlil Gibran.
References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.
*This blog has been re-blogged