Why Physicians’ Words of Hope are so Important to Cancer Patients…

I just passed the five-year mark since my diagnosis of Stage 3 Her 2 Positive breast cancer–  over 6 cm tumor the size of a tennis ball, with 9 positive lymph nodes,  and a heart attack from chemo thrown in for good measure.   I ponder how I got to this point.  Was it because of the mastectomy, the chemotherapy, the drug Herceptin, the radiation, or the Aromatase Inhibitor drugs?  Of course.  But coupled with the great medical care that I received, were the hopeful words of my physicians.  Those words are still played over in my head as a mantra every single day, but especially when the fears of recurrence voices start screaming at me.  Their words of hope were the greatest gifts given to me.

My first experience with this power of words was on the day of my diagnosis.  Dr. Tara Breslin,  a surgical oncologist then at the University of Michigan Comprehensive Breast Care Center delivered all the bad news to me:  mastectomy, chemotherapy, radiation, Herceptin and more. Then she looked me in the eye with great compassion and said in a positive manner:  “We can cure you.”  I must say, I did not believe her.  But her words were the only thing I had to cling to as I began to comprehend all that faced me.   I had those words permanently adhered to my dining room wall in 10 inch high letters which I can see from the majority of rooms in my home.  During the darkest days of wanting to die and give up during treatment, I would just sit at my dining room table and stare up at those words.  Now, five years later, I still look at them countless times a day, read them, and ponder their meaning.  Those words have become part of my home, a part of me, and an ongoing prayer.

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The next words were from my Oncologist, Dr. Daniel F. Hayes, also at the University of Michigan Comprehensive Breast Care Center. Dr. Hayes honestly told me that my cancer was a tough cancer.  He did not mince words or pull any punches with me.  I have always been grateful for that as well.  But his words that play through my head every day since he spoke them to me are these:

  1.  The cold, snowy February day I told Dr. Hayes I wanted to quit Adriamycin Cytoxan Chemo as it was too hard for me, and I would rather die is etched in my memory.  Dr. Hayes held my hand in a doctorly fashion, told me he did not have firsthand knowledge of what I was experiencing, but told me an inspirational story about a former patient.  He then told me that “I won’t let you quit.”  I then blurted out “I don’t have any control over my life” which was a huge issue for me because I like control.  He responded, “Don’t worry about it.  I am in control of your life.”  At that moment I let go of the need to control, and I knew I would complete treatment and somehow gather the courage to get through it.  I thank God every day I did not quit chemo.
  2. Because of Herceptin, I had permanent heart valve damage from the drug.  My Ejection Fraction dropped from a normal 65 to a very low 29.  My EF never improved, and Dr. Hayes had to tell me that I would not be able to resume Herceptin which should have been for 12 months, and I only had 3 months of the proven miracle drug for Her 2 Positive Breast Cancer patients.   Dr. Hayes then said the words that have played over and over in my head since the day he spoke them to me:  “I do not want you to spend one minute worrying that you did not have enough Herceptin.  God did not say exact the dosage that you needed.   I believe you have had enough and will survive this.”  I remember the words like they were spoken to me yesterday because not only did I write them down sitting in the parking lot before I left the cancer center, I repeat them to myself like a prayer every day.
  3. After my diagnosis, my 80 year old mom was diagnosed with Stage 1 breast cancer, then my only sibling, my sister, was also diagnosed with Stage 3 breast cancer.  Of course, we went through genetic testing.  On the appointment with Dr. Hayes reviewing the results of those tests that I had a genetic mutation called Chek 2, Dr. Hayes said:  “I believe you are cured.  We just have to keep it that way.”

The moral of my story is — choose your physicians carefully.  Their words of hope play an integral part in your healing and surviving cancer.  I cannot begin to tell you the number of cancer survivors I have had a conversation with while sitting in the cancer center that told me the same thing:   “I was told I had months to live after my cancer diagnosis and to get my affairs in order.  I switched doctors.  My new doctors gave me hope and treated me. Now I am 5, 10, 15, 20 years out and cancer free.”

We all know of those miraculous stories.  You play a role in it!  Make sure you have the right physicians for you!   It is worth every mile driven and every sacrifice you and your family have to make to find them!

 

Please check out my online store for cancer patients at http://www.hellocourage.com

 

 

 

 

 

 

 

What Would You Say to Cancer?

Perhaps you have been recently diagnosed and all the terror of a new cancer diagnosis consumes your mind, body and spirit.  Or maybe you are in the midst of chemotherapy and wonder if the nightmare will ever be over and whether you will survive.  Maybe you have just “graduated” from active treatment and wonder what your life will be like without hundreds of doctor appointments.  Or maybe you have been a long-time survivor, but have an approaching oncology appointment and once again you feel the fear.

The cancer support community, http://www.IHadCancer.com recently asked cancer survivors to post 5 words on Twitter stating what they wanted to say to cancer.  The top finalists were these:   Giving up isn’t an option, The future is not written, You are not your diagnosis, Through struggle came tremendous strength.   For 3 days I thought about it, then decided that I wanted to tell cancer that I am “Living my best life now.”

What are the 5 words you would say to cancer?   To help inspire you, go to their website and read the section “Dear Cancer”    http://www.ihadcancer.com/dear-cancer

This section is not limited to 5 words, but the stories will inspire and amaze you!

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Please check out my store – http://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!

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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

More Birthdays after Cancer

The American Cancer Society has a campaign called www.morebirthdays.com fighting for a world with less cancer and more birthdays.  When I first heard about that promotion, before my own diagnosis of Stage 3 Breast Cancer, I thought maybe it was a little silly and a little hokey.  I am sure you have seen the commercials of celebrities like Jennifer Hudson and Celine Dion singing “Happy Birthday”.   Now I see the wisdom in the campaign as I reflect on how birthdays have changed for me.

Recently, I celebrated my first birthday post-treatment.    Pre-cancer I dreaded birthdays because of being a year older and everything that goes along with that experience.   No longer am I ashamed of my age and trying to reduce it by a few years.  Everyday is a birthday to me.

Constant tears came to my eyes on my birthday and even a few sobs as I thanked God for the gift of life.   Gratitude truly overwhelmed me for how far I have come, for all those who helped me, and for being alive.   That emotion came from the depth of my soul and rose so strongly that it just came out my eyes like a fountain that had no where else to go.

Surprisingly enough, I got an email on my birthday from a breast cancer patient who is 34 but feels 74.  She was wondering if she will ever feel her real age again.  I assured her she will, but it will take time to slowly return to her actual age.   Finally, I am back to feeling my age.  What an amazing thing to feel 30 years younger than I did just a few short months ago.  I have found the fountain of youth!!  And my sympathy and compassion for older people has increased tenfold because I lived in my 80s for many, many months before returning to the wonderful 50s.

If you are a cancer patient going through active treatment, it does get so much better.  You may feel like dying today as you struggle your way through chemo.  That’s okay, but keep fighting.  There is so much hope.  Perhaps you feel like giving up because you don’t have any more strength or courage to muster.  Keep going.  You can do it. Just get through this hour and this day.   Don’t let anyone tell you there isn’t hope.  Next year will be so much better!  Keep remembering that and use that mantra to help you get through!

And if you have a family member or friend who is a cancer patient or cancer survivor and celebrating a birthday, send them an e-card from www.morebirthdays.com    It will be the most meaningful thing you can do!  And while you are at it, consider making a contribution to the American Cancer Society.

Cancer Rehab Programs – do they work and are they worth it?

Cancer Rehabilitation Programs work.  I went into cancer rehab kicking and screaming, but now I am thankful that I have devoted the time, energy and dedication it takes to participate in the rehab program.

Cancer Rehab is a rather new field at many hospitals.  Since there are more and more cancer survivors, hospitals have realized that cancer survivors feel abandoned after over a year of intense treatment to suddenly be thrust aside and on your own. For years there have been rehab programs for heart patients, stroke patients, and just about any other kind of rehab.  Many cancer patients have debilitating side effects.  Prematurely they often decide that this is the way it is going to be.

In my case, since I already had Lymphedema in one arm and was receiving treatment, I thought I would have to live with the very limited range of motion I had in that arm as a result of Mastectomy, Chemo and Radiation in addition to many other side effects.

My local hospitals, the Mercy Health Systems in Toledo, Ohio, recently became affiliated with the STAR Program which is a program from Oncology Rehab Partners.  It was developed by Julie Silver, M.D., an assistant professor at Harvard Medical School, who is a cancer survivor.  A year after cancer treatment ended, Dr. Silver then in her 30s,  realized that cancer survivors needed help to heal.   Here you can find out if there is a STAR Program certified hospital near you:   http://www.oncologyrehabpartners.com/    My Lymphedema Specialist talked me into being a guinea pig for the program – I am Patient #2 at my local hospital.

My course of treatment has been Physical Therapy and Occupational Therapy based which has been a tremendous help to me.  Not only has my arm improved by 75%, my body pain has lessened, my fatigue has greatly diminished, and I feel more prepared to handle the stresses of daily life post cancer.   This has taken commitment on my part.   There are other elements to the STAR Program which are done at home like exercises, writing down fatigue levels,  monitoring your diet, and more out-patient hospital treatment.

If you are a Cancer Survivor or Cancer Patient, I would advise you to seek out a good Cancer Rehab Program.  Don’t wait until your Oncologist or physician tell you to, because they may not.  Often, they overlook that aspect of treatment.  You have to be willing to dedicate the time and effort it takes to do the work. But remember, it is worth it.

I had six months after active treatment ended before I started the Cancer Rehab Program.  I needed that six months to have the stamina to face more challenges.  Everyone is different.  Know what is the appropriate time for you before you start rehab.  For some people that might be immediately after active treatment ends.  For others, it may be longer.

Most insurances will pay for Cancer Rehab, but check with them before you start any program.  My insurance pays for 20 Physical Therapy visits and 20 Occupational Therapy visits per year.

Lessons of Chemotherapy One Year Later

Tomorrow I celebrate my first anniversary of my last Chemotherapy treatment for breast cancer.   I planted flowers to celebrate as I was unable to plant last year.  As I pondered  this cancerversary in the garden, I realized these Lessons of Chemotherapy remain with me each day.

If you are in the midst of Chemotherapy or active cancer treatment, take time to learn your lessons through the pain and suffering.  They will be valuable gifts to you in the future.  And if you have never been a cancer patient, I hope my lessons can be helpful to you.

1)  You only have so much energy in a day.  Use it wisely.  Plan things that take a lot of energy during your peak energy times of the day and  week.

2) Learn to listen to your body and respect what it needs – exercise, healthy foods, and nourishment from other sources.  Say no to things that do not nurture you or bring you life.  Just ask this simple question:  “Does this help me or harm me?”   Never hesitate to say no to things that harm you.

3)  If anything is not serving you well, people, places or things, begin removing it from your life.  It is a process, but make the first step.  The first steps are difficult, the remaining steps are easier.

4)  Make time for what is important to you and make sure you know what is!

5)  Appreciate all of life each and every day and give thanks.  And when those rough times come, I always say to myself,

“It’s better than Chemo!”

6)  Make plans for the future and dream big.  Picture yourself living life in these dreams!

7) Listen to the still, small voice of God.  He has a purpose for this second chance at life.

8) If you do not have 100% confidence in your doctor, medical facility, or medical staff, find another.  We often spend more time shopping for a new piece of clothing than finding the right fit in a medical professional.  Your life is in their hands.  Make sure you trust them with it!

9) Pray for those who supported you during treatment and return their love and friendship.  Their faithfulness helped you survive and continue to thrive!  Be grateful and show your appreciation.

10)  Begin to forgive those who abandoned you or never went out of their way for you during cancer treatment.  Learn how to be friendly yet keep your boundaries in place when and if your paths must cross.  They have proven themselves not to be friends.  Let them go in peace and remember with love the valuable lessons they taught you.

And check out my cute chemo caps at my store www.hellocourage.com  and other items.  Another lesson of Chemotherapy.  Have cute caps!   Or click on the cap!

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Surviving Cancer–Adapting and Adjusting Equals New Hope

Perhaps you landed here because you are a Cancer Survivor and are having difficulties.   Or maybe a spouse, parent, or loved one had cancer, and you do not understand why they are having such a difficult time adjusting to life after cancer treatment.

Six months into being an “official” Cancer Survivor, I made this realization:  Life is not going to be what it was before the cancer diagnosis.  Somewhere in the back of my mind, I believed that someday, somehow, everything would shift and it would be business as usual, and my pre-cancer life would come back magically.   I kept waiting for it.

This all started because one morning as I was donning my Lymphedema gear, taking my medicine cabinet full of pills and supplements, trying to walk because of the severe pain (side effect of the drug Arimidex), and inserting my prosthesis in place of my amputated breast,  it finally hit me that “this is the way it is going to be and you damn well better get used to it.”

I was praying and asking for guidance about what I need to do so I can move forward and not stay stuck. The big, burly, bearded husband of Food Network television’s star Southern cook, Paula Deen, popped into my head.  Why is he in my head, I wondered? I don’t even know his name!  So I googled “Paula Deen’s husband” and interestingly, I found out his name is Michael Groover and he is a Harbor Pilot.   Hmmm, I thought, what does that mean for me?

I found this definition and explanation:   A harbor pilot, often known as a maritime pilot, is a boat pilot with specialized knowledge of a particular port or harbor. The pilot is needed to direct large ships into a port where there are specific deep water channels surrounded by shallower flats.     Without the services of a harbor pilot, docking ships would become a big hazard. There would be a real chance of running aground and damaging the ship and the cargo.   It’s precision work, and as with the many steps and players involved, safe docking and undocking is crucial to the ultimate success of the voyage. 

Wow, I need a Harbor Pilot to help me with this part of my journey as I do not have the knowledge or tools to navigate these unchartered waters of Cancer SurvivorSHIP.  While I was out to sea in cancer treatment world, my medical team did all the captaining of my ship.  Now, I needed someone experienced in the hazards of maneuvering my ship into this new port.  And it is okay because I have never been here before, and it is all new to me.

A friend had told me a former pastor of mine from 20 years ago, who was a gifted counselor and a cancer survivor, would be glad to speak with me.   He is a survivor of a rare cancer.  He was not expected to live, but 4 years later, he is still here and celebrating life.  We shared cancer stories.  And when I heard about all that he had to deal with on an everyday basis because of all the damage done because of Chemo and high dosages of Radiation, it was inspiring and uplifting.

He then listened to me and was able to immediately assess where I was on my survivor journey.  “AA” he said, “Adapt and Adjust.”  He told me that the biggest learning curve for him in the past 4 years was adapting to what he can do, eliminating what he cannot do, and adjusting to new, yet exciting ways to live life. 

Two simple words, but because he has been there, he knew exactly what I needed.  He is a Harbor Pilot.    The imagery of my Cancer SurvivorSHIP coming into a new port, with new things, new possibilities, and new opportunities resonated with me.  Sure, in order to adapt and adjust, I have and will have to give up things that I can no longer do, no longer take care of, or that no longer serve me.   But I have, I can and I will. For the first time in a very long time, I felt real hope and not manufactured hope!   There is a big difference.

If you are a Cancer Survivor, please take time to focus on those simple words – adapt and adjust.  Perhaps, like me, you have been waiting for life to go back to the way it was before cancer.  Unfortunately, it will not go back.   But with some adapting and adjusting, you can be ready to accept the new life that awaits you.  Also, look for a Harbor Pilot to help guide your way to this new port – a support group, a counselor, or someone who has been there.  You cannot navigate these treacherous waters alone.

I had this Inspirational Subway Sign made for my www.hellocourage.com  store.  These are the words that I realize it takes to transition from cancer patient to cancer survivor.  These have FREE SHIPPING to the Continental USA and are solid wood and beautiful!!   Click on picture for more details!

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If you are not a Cancer Survivor, I’m not going to let you off the adapting and adjusting hook!  Perhaps it is time to review your life and see what you are holding onto that no longer serves you.  Oh, there can be many things:   a job, a relationship,  a certain way of doing things, a grudge, old habits, clutter, painful thoughts…the list goes on.  Time to adapt and adjust to new ways, new thoughts, new ideas, and new hope!  And if you cannot maneuver those waters of change, find or hire a Harbor Pilot to help you.

I would love to hear your stories!     Denise