Fear of Recurrence – Lessons along the way

The biggest fear after discovering you have cancer is then worrying it will return.    The fear of recurrence begins during treatment and never ends.  It takes managing your fears to keep it to a tolerable level.   For the next four blog posts, I am going to focus on dealing with fear of recurrence including ways to prevent recurrence.

My neighbor, Lisa, is a 12 year survivor of Stage IV Lymphoma.  She was not expected to live.  The doctors threw every treatment at her because she was only in her 30s with three school-age children.  It worked and all three kids are now in college!  However, 12 years later she told me never more than a few hours go by that the fear of recurrence doesn’t enter her thoughts.  The advice she gave me is “Do the best you can to control them.”

Here are things that help me.  And remember, it is like playing that arcade game, Whack-a-Mole.  There is always a new fear that will arise.  Keep beating them!

whack-a-mole

1)  It is unbelievable how many aches and pains we have just because of aging, medications like Tamoxifen or Aromatase Inhibitors and life circumstances.  When my first fears of recurrence began, I would call it “organ of the week” because each and every week something new was hurting.  Good advice was given to me at the beginning of my Survivor journey from another Survivor:  wait 6 weeks before you do anything.  NOW I SAY THIS WITH CAUTION…  the 6 week plan does not work for everyone.  Obviously, if I was having some serious symptom, I would call my Oncologist or physician immediately.

I am talking about mostly muscular pains from aging and the drugs!  Some days I have severe pain from the Arimidex that it is difficult to get out of bed.  Some days I do not.   For me, the 6 week plan has been invaluable advice to me because it calms me down.  BUT THAT MIGHT NOW WORK FOR YOU!   I am not giving medical advice, simply suggestng that you have a plan that you put in place and speak openly to your Oncologist about it.

All of my symptoms have gone away, usually within a week or two.  I kept having pain in the rib area under the breast that was removed.  Rib pain can be common from radiation.  But this was more intense.  I was terrified. Finally it dawned on me that I had started getting out of bed in a new way, throwing my arm over my head and pushing off the headboard, because of my Lymphedema arm.  Well, as soon as I readjusted and found a better way to get out of bed, the pain went away and has stayed gone.

Before you panic about some new ailment, really think about what you have done, what it could be from or what you may have done to cause the pain.   Things that would never have bothered you in the past, are now huge deals!!   And DEFINITELY call your Oncologist or physician immediately if you have some serious symptom.

2)  Learn to try to discipline the thoughts that come into your brain many times a day.  When fear grips me, I try to step back and say, “Oh hello fear of recurrence thought.  There you are again.  But you know what?  You are not going to ruin my day.”    Learning to talk to the fear like a spoiled child gives me more control.

3)  Ask your God to give you encouragement.  This has helped me so many times.  Last week I prayed the prayer that I needed encouragement.  Later that day,  I was sitting in my living room and the thought came to me that I should run over to my local beauty school and get a pedicure.   I called and was told to come right over.

After I sat in the pedicure chair, the student asked me about my arm because I wear a Lymphedema sleeve.  I told her I was a breast cancer survivor.  Another student was walking by the chair and heard those words.  She immediately stopped.   This gal was in her 40s.  She proceeded to tell me she was a 10 year breast cancer survivor –  Stage 3, Triple Positive – MY EXACT DIAGNOSIS!  She was on a clinical trial back 10 years ago and had the same drugs I had taken for treatment.   She said that she always wanted to go to beauty school, but breast cancer got in the way.  Delaying it because she thought she would die or have a recurrence, finally at the 10 year survival point, she decided it was now or never!   What words of encouragement our spontaneous meeting brought to me!

4)  Do things that make you think you can keep cancer recurrence from happening.   In my future posts, I will tell you about things that I do – like supplements and nutrition.  I told my Oncologist even if these things do nothing, the placebo effect for me is huge.  He agreed.

If you have hints or advice for others about things you do to manage recurrence fears, please post and let us know!   And do look for my next posts to help give you more tools!    Be sure to visit my Online Breast Cancer Store at www.hellocourage.com     Thanks!     Denise

Lessons of Cancer. . .Live the Miracle, Be the Miracle

Every year for many years, four high school friends and I go on vacation together.  Some of us have known each other since kindergarten!  We feel like teenagers again for a brief week remembering our carefree days!  This year we spent our time in the picturesque Upper Peninsula of Michigan driving along the shores of majestic Lake Superior, touring lighthouses with fascinating histories, and viewing gorgeous waterfalls.  Then we ventured to Mackinac Island, home of the legendary Grand Hotel.  Horse carriages and bicycles are the mode of transportation on the historic island.    They are amazing places to visit.  It is like living in an impressionist painting while you are there, but all too soon, it is time to emerge.

Traveling in two separate cars returning from Upper Michigan, three of the gals were in one car as they were going to drop off one of our friends in the Metro Detroit area.  They got a late start from the Upper Peninsula, stopped for lunch, made a wrong turn, got into traffic jams during rush hour in Detroit, and finally got our friend home south of the city.  Then the remaining two friends made a last-minute decision to stop for gasoline before getting back on the interstate.

As they were fueling at the very busy BP gas station in a suburban neighborhood, Linda noticed a young man lying on the ground next to his work truck.  Another young man was putting cold water on him attempting to revive him.  No one else was paying attention but going about their business getting gas.  If anyone else noticed him, they ignored him.

Cathy, the other gal, ran over to see what she could do to help.  Seeing the young man probably in his 20s on the hard concrete floating in and out of consciousness, she asked his co-worker if he was diabetic.  Cathy’s husband has blood sugar issues and that was the first thought that came to her mind.  The co-worker responded that he  was, but he did not know what to do.

Immediately, Cathy ran into the gas station to tell the attendant to call 9-1-1.   The young woman behind the counter handed Cathy the phone as she didn’t want to be involved.  Cathy reached 9-1-1 and another customer in the store helped her tell the Operator of gas station location.  Since this customer had helped Cathy during the conversation with the 9-1-1 Operator, he went and got orange juice to assist Cathy.  The young attendant made him pay for the orange juice before they could take it out of the gas station’s store!

My friend, Linda, was out of her car by this time.  She held the young man up from the ground and put a rolled sweatshirt under his back so he would not choke as Cathy started getting orange juice into him by drop fulls with a straw.  Cathy and Linda were operating from instinct as they had no medical training other than CPR.   But they said they knew they had to do something to try to keep him alive.  Cathy said once she used the straw method on a pet, so thought it was worth a try.    After a few drop fulls, the young man started licking the orange juice and responding a little, starting to swallow and opened his eyes.  By this time a crowd was gathering with onlookers as my two friends were willing this young man back to consciousness and preventing convulsions.

Finally, the paramedics arrived and took over.  The paramedics determined that the young man’s blood sugar had been down to such low levels that in a short time, left unattended, he most likely would have died.   My friends waited until he was conscious and responding.

I already knew these women were heroines.  They were on the front lines when I was diagnosed with breast cancer and remained there for the duration. Within one week they arranged a luncheon for me, showered me with love and gifts, and promised me they would be there for me.  And they were!  ( Linda was the person who sent me the greeting card every week for a year!)   These two women along with many other friends and family  jumped into action and did not stand on the sidelines watching.

I receive so many letters from people who were abandoned by friends and family members during cancer.  It is difficult for them to get over the pain.  One woman told me her friend’s abandonment was worse than her cancer diagnosis.  Many divorces happen after a cancer diagnosis and many other relationships end.  So often cancer survivors struggle with people who now want back into their lives once they are feeling better.

My question to them is this:  ” Before cancer, did you do the majority of the giving in the relationship? ”   One hundred percent of the time, the answer is yes.

The people who run away from cancer patients are like those that saw the young man on the ground.  They had the potential to help this young man live, but they did nothing.  If asked why they didn’t help, many would have excuses like, “I  didn’t know what to do”, “I was giving him his space”, and “I thought about helping, but. . .”

If you are a cancer patient or survivor, you can relate to the young man on the ground.  You felt like your life was slipping away and each act of love and kindness was like that dribble of orange juice into your mouth — just enough support to help you keep fighting.

If you have not had to endure cancer, perhaps it is time for a relationship review.   In your soul, you know the relationships that are not healthy in your life.  Who would let you lie on the ground and only watch, and who would rush to your aid?