Batman v. The Joker and Fears of Cancer Recurrence

My sweet 4 year old great-nephew, Brady, and I play a lot of Super Hero pretend games.  His favorites are Batman, Robin and the crew.  Every time we play, he always gets to be Batman and I’m always a “bad guy”  usually The Joker or The Riddler.  On one of his Batman houses there is a jail.  Brady said to me, “You know sometimes the bad guys are in jail and sometimes they just get out.”

 

That is how fear of recurrence is.  Some days Batman has all the bad guys locked up, and other days, the bad guys are out in full force.  I know you understand!   For me, the bad guys were out the last few weeks.  Fear of your own recurrence comes barreling down on you when you least expect it which can easily be triggered by every day life and your compassion for others.

My very active 80-year-old mom who was my caretaker during breast cancer found a lump in her breast after a self exam, had an emergency mammogram and ultrasound and is scheduled for a biopsy this week of both breasts as they found one in each.   “Here we go again” are the only words that play in my head.  I know the odds are that there is a good chance that they are benign.  That’s nice, and I know there is that chance, but I must be prepared with a medical plan for her.   I know the phone calls I would make, the cancer center I would take her to, and what would need done if she gets that dreaded phone call.  I’m no longer naïve and unfortunately have lost my ability to think “it will all be fine.”

Then I went to the funeral home to support an elderly woman who goes to my church.  Every Sunday this wonderful woman tells me she continues to pray for me.     This week her daughter died of  cancer.   I didn’t know her daughter had breast cancer until I got to the funeral home.  Her mom kept telling me she had bone cancer.  At the funeral home my elderly friend told me that she never wanted to make me feel bad and did not want to tell me her daughter had Breast Cancer that had metastasized to the bone.  Her daughter was Stage 4 out of the gate and fought for 5.5 years until she could not fight anymore.  Her daughter outlived the medical experts’ expectations.   I had never met her daughter, but I felt such a kinship with the woman.  As I stood by her casket I had to literally hold back sobs and my heart spoke to hers, “I know a little bit of what you have gone through.  I am so sorry.  I celebrate your new life with you!”

And the topper was  a beloved breast cancer sister that I met through my Blog, was diagnosed with lung metastases.  Her world came crashing down even more than it did with her initial diagnosis as she has to deal with a Stage 4 diagnosis.  It all starts over again and her life that was just settling down, is in total upheaval.  I had been telling her that her bad cough was just from a virus she had contracted.  I was wrong.

I’m working on getting those bad guys locked up in jail again.  I prefer they stay in jail, but sometimes they get out and there is not much you can do about it.

 

 

 

 

 

 

 

 

 

Check-ups, Anxiety and Breast Cancer

So I had this nice, tidy, cut and dried blog entry ready to post about how to prepare for breast cancer check-ups post treatment.  It had all these specific little things to do, make a plan, do things differently, go to lunch beforehand at a new restaurant, drive a different way, numbered 1 through 7 – blah blah blah.  Well, guess what?  I tried it, and I do not think it helped me one bit for my breast cancer check-up.  So I cannot tell you what to do or how to prepare!  I flunked. It sure did not work for me!

It was my first 6 month checkup with my Medical Oncologist (prior it was every 3 months for the first year post-treatment), and I totally fell apart.  I erroneously thought I would be fine and anxiety would not get to me.  WRONG!  To coin a phrase, I was a basket case.  It was worse at the 6 month point because in 3 months you think “Oh, nothing much has changed.”

Every memory I did not even know I had came rushing forward.  Post Traumatic Stress Disorder (PTSD) was in full swing yesterday!  The day I took my medical records to the Cancer Center for the first time and my knees buckled when I saw the bald women.  Then the MRIs and scans, Mastectomy, the bone scans, all 16 chemo treatments, Neulasta shots, Herceptin, heart attack thank you Chemo, and God only knows what else came flooding back to me in one big WHOOSH!  Never had I felt anxiety that strong.  It was awful.  The memories kept pounding me.  Then in the exam room, I remembered how many times I had been in Exam Room 12!  How does my brain even know?  But it did!  Instinctively I knew that it was in Exam Room 12 where I first learned I had Stage 3 Breast Cancer.

Now 18 months out from active treatment ending, I look back from the perspective of time and think “How did I make it through?”  While in the midst of it, you have no choice but to go through it.   Maybe you are in the midst of  “IT” right now.  You will be given the strength to get through it, but later you will wonder how you did it!

The great news is after a thorough examination, my Oncologist said I was doing well, no tests needed right now, come back in 6 months.  It feels like you are in the electric chair and you just got a reprieve from the Governor!

While waiting to be called back, I met a woman with a chemo cap on in the waiting room.  We got to chatting.  She had a Stage 4 recurrence 7 years after initial Stage 2 diagnosis.  I gave her some of the hopeful stories I have heard from many of you who have found yourself in that same situation.  She was grateful.   Then we discussed anxiety and how you never get over the fear and how non-cancer survivors often think we are hypochondriacs and how we hate it all.   She said when she was first diagnosed with breast cancer, which she never thought would happen to her, it made her realize just how vulnerable she is.  And she said it is that vulnerability that causes her fears.  That certainly made sense to me!

So Sisters of Breast Cancer, you gave me the strength to get through it yesterday.  All of you who write to me, share your stories with me, and tell me your fears, you were there with me yesterday.  THANK YOU!  I’m sorry I do not have any easy answers for you on how to get through checkups.  I do not.  As a woman who prays, I could not even pray!

One last thing I was eager to share with all of my University of Michigan medical personnel yesterday was how Breast Cancer has changed me in positive ways – like this Blog and Hello Courage, my online store.  I told every receptionist, nurse and doctor I could find about Hello Courage and passed out my cute post cards to them.  They were thrilled to hear about it (or at least acted like they were – LOL) and everyone said they were eager to go to their computers and look at my new Spring/Summer line of Chemo Caps!   I would NEVER have worn a wig if I would have had Chemo Caps like these!  Here is the preview for you – click on caps to get to http://www.hellocourage.com

 

 

 

 

 

 

 

 

 

Statistics and Breast Cancer…Don’t Pay Attention

We have all been guilty of it on more than one occasion no matter what place we are on Breast Cancer Road – patient or survivor.  Late at night, concerns fill our head, and as we sit in front of the computer,  suddenly we just cannot resist searching on Google “life expectancy for (enter your cancer stage, grade, and parameters).  Boom, up will pop that you will live one month, one year, two years, or 5 years, 3 months and 12 days.

As cancer patients and survivors, we have enough fears and side effects to concern ourselves with on a daily basis.  My philosophy is throw away those statistics.  Quit reading them, quit looking at them, and get them out of your head.  If you are Stage 0, Stage 4.or any stage in between . .don’t read them!

We all know or know of people who lived way beyond the statistics.  People who should have been dead 40 years ago from some dread disease, and they die from old age.  I want to be that person and not a statistic.

My maternal grandmother was a great source of inspiration to me in this area.  In her early 60s, Nana was told her heart was so bad she should have been dead years prior according to all the heart tests.  Her long-time doctor wasn’t helping her.  Often, she could barely breathe and would have terrible heart “spells.”   Nana decided she needed a young doctor with new ideas.

So she went out and found one!  Nana was a snowbird spending winters in Florida, so she decided there would be doctors with new ideas in Florida.   Dr. Werner, the young, bright, fresh out of medical school cardiologist said he would try some new drugs on her that were just approved by the FDA.   He warned her that these drugs did not have much of a track record, but because she had no choice, she should try them. Nana was thrilled to try them as my grandmother always loved trying new things!

When she got out of that appointment, I was extremely concerned.  I asked, “Nana, aren’t you afraid you will die knowing the statistics?”   Nana answered in her sassy, spunky yet loving and faith-filled way:  “Denise, honey, I am not a statistic.  When it’s my time, it’s my time.  I am not going to listen to a statistic.  And I trust that young Dr. Werner will help me get better. God brought him to me.”    My grandmother lived to be 92 and died peacefully of old age.  She was still singing Dr. Werner’s praises until the end and taking the same medicines he prescribed 30 years previously.

That is the spirit I want to live by as a Cancer Survivor.   I replay over and over in my head my encounters with three Stage 4 women I met during chemo.  They were all given 3 to 6 months to live.  All three of them said, “NO WAY.”  They all took action and found a new Oncologist that gave them hope.  When I encountered these inspirational women, they had been alive 7 years, 12 years, and 20 years respectively!!  Separately, they all said the same thing to me.  “NEVER give up HOPE and make sure you trust your Oncologist with your life!”

Don’t let ANYONE take away your hope, especially a statistic.  Protect HOPE like it is the greatest gift you have ever received because it is.  Do whatever is necessary to protect that gift.   Guard and defend it.  Wrap it up in a box, decorate it, put ribbons and jewels on it!  It is your most prized possession.  Treat it that way!

Correct Chemotherapy Dosage When Overweight or Obese

As a plus size woman who has struggled my entire life with weight issues, I have been reading with interest the research of Dr. Jennifer Griggs who is an Oncologist and Director of Breast Cancer Survivorship Program at the University of Michigan where I receive my care for breast cancer.  In October, 2013 her ongoing research and the research of others made international news.

Dr. Griggs has studied the topic of whether overweight and obese patients are getting the correct chemo dosages according to their BMI (body mass index) since 2005.  Very often patients are not getting appropriate dosages as this news story from CBS news outlines:

http://www.cbsnews.com/8301-204_162-57603715/

As a patient at the University of Michigan, I always knew I was getting a chemotherapy dosage based upon my weight.  There was a big ritual that was gone through every time I received chemotherapy.  I was weighed not once but twice on two different scales (every overweight patient’s nightmare), a little bit of a panic by your nurse if you lost 5 pounds, calculation by Oncology Nurse Practitioner of your chemo dosage according to current body weight and communication to the Pharmacy, and a rechecking of dosage by two RNs before the dosage was administered.  They calculated my individual dosage according to BMI, had their computer calculators out, checked, double checked and rechecked, and they did it out loud so I could hear it,  showed me the calculations and asked if I had any questions.

But apparently, according to Dr. Griggs’ research, this is not standard procedure every where in the world.  Often overweight and obese patients are shorted chemo dosages.    It makes logical sense that someone who weighs 250 pounds should get more chemo than someone who weighs 125 pounds.  However, giving the correct dosage according to weight can be problematic for overweight patient due to increased side effects.    Since I had a heart attack during Adriamycin Chemotherapy, my heart was at greater risk because of the higher dosage of drugs I received.  On the positive side, however, studies show that heavier patients are less likely to develop dangerous, low blood counts from cancer treatment, and that they clear chemo drugs more quickly from the body than thinner people do.

No matter what weight you are, make sure you ask your Oncologist the question about how your Chemotherapy dosage is calculated and what is the right dosage for you.  IF YOU DO NOT GET ANSWERS that feel right to you, seek a new Oncologist immediately.  Your life depends on it!______________________

Please check out my online store for new items – like cute winter hats!  www.hellocourage.com

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!

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