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

 

 

 

 

 

 

 

Inspiration from the Chemo Ward

Chemo Ward is rather a 1960s phrase — Infusion Area is the new, modern term.  But if chemotherapy is involved, I think it should be in the title.  So I will call it Chemo Area to blend the old with the new.  Going to the Chemo Area is inspirational.  Now I say that as a Cancer Survivor, not as a Cancer Patient!  I did not find it so inspiring when I was the patient.  But now that my sister is the patient suffering the horrid consequences of Chemo, and I am along for moral support and unsolicited advice, I can be more relaxed to realize all the inspiration that is transpiring.

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Inspiration comes in the form of the patients who are gathered for the same objective on any given day: receiving toxic drugs to kill cancer or prevent cancer from recurring.  It seems to me fate has a role in deciding who will be your chemo “neighbors” on infusion day.  Somehow, they are always inspiring and just what you need to hear.  Like the woman who was in her mid 50s sitting next to my sister.  As she told us what her diagnosis was, my sister and I simultaneously tried to suppress gasps when she said “pancreatic cancer” as our father died of that horrible cancer.  But we were both so uplifted after talking with her.  She has been alive over a year, her tumors are being managed with chemotherapy, and she is hoping to live quite awhile.

The following week, the woman next to Diann was also receiving Chemo for pancreatic cancer.  Her husband said she was a “walking miracle” – and she was!   It was healing for both Diann and I to hear about great breakthroughs they are making in pancreatic cancer.

Then there was the 34 year old young man, diagnosed with testicular cancer.  It was so uplifting to hear his story and hear about all the people who were helping him make the several hour journey to the cancer center DAILY for 5 hour infusions!   He told us he had been with his employer only 2 weeks when he was diagnosed.  How marvelous to hear that his employer has been behind him all the way.  That made me feel so good as I get letters from cancer patients whose employers fire them with a cancer diagnosis after many years of dedicated service.

The Chemo Nurses are a special breed all their own!   Chemo Nurses are definitely at the top of my list for those people whom I admire!  One nurse who has 7 months to retire, has been an Oncology nurse for 40 years.  Talk about dedication!!

And anyone who reads my blog knows that as a result of going through chemo and seeing a need, I began selling Chemo Hats and created my online store at http://www.hellocourage.com    As a result of constantly searching for new and different hats, imagine how I am around a bunch of cancer patients many with hats on.   I start staring at their hats – and I mean staring!  The other day a gal had on a darling sequined cap.  I get sidetracked and don’t realize there is a person under that cap – until she finally asked me, “Can I help you?”    I started to laugh and apologize at the same time.

Spending the day in a Chemo Area isn’t anyone’s first choice of how to spend a day.  But if you have a chance to accompany a friend, family member or stranger, get beyond your fears and do so.  Not only will you make a difference in their lives and do the cancer patient a kindness they will never forget, you will come away inspired by the amazing people you meet!

Breast Cancer – How to Feel Sorry for Yourself and Complain

As a breast cancer patient and survivor, do you feel guilty on the days you feel sorry for yourself or when you have a pity party?  I know I do.   Usually, I bring solace to myself by saying, “Oh, at least you are alive” or “So many people have it so much worse than you do, then I let those individuals flash through my mind.”  Plus, I say, “Denise, you are supposed to be a role model and an inspiration, get over it.”

Recently, my mom, sister and I went away for the weekend to a place we used to frequent before my breast cancer diagnosis 2 years ago.  This was my first time back.  When we got to the hotel, it hit me what a different person I was now than the last time I had been there.  I felt very sad, but gave myself my usual “don’t feel sorry for yourself” pep talk.

After a busy day, back in the hotel room, my sister looked at me with much compassion and said, “You have so much to handle and go through.”  I started to cry.  It was the first time someone actually witnessed me for a 24 hour period since diagnosis.  My sister had been observing me quietly.   She witnessed the hassle of my breast prosthesis, the 16 pills and supplements I have to ingest, the Lymphedema compression garment struggles and the countless and constant limitations Lymphedema causes, the food allergies that I now have including gluten and dairy that developed during chemo, my heart issues, and the excruciating joint pain I have on most days from Arimidex.  (Thanks for listening!)  Her compassion and observations rather than a quick “You look good” made me realize it isn’t my imagination that I do indeed have much to deal with that prior to breast cancer I did not.

After I got home, I pondered it all.   An idea popped into my mind.  On Fat Tuesday, the day before Lent begins, people eat, drink and be merry because they are facing fasting and abstinence.  So I decided I was going to have a customized Fat Tuesday of my own and allow myself to complain as much as I wanted within a 2 hour period – no more no less.  Then I would be back on abstinence from complaining.

So I complained up a storm, felt sorry for myself, got angry, and had a solo pity party.  Honestly, it felt good to release some of the pent-up frustration and breast cancer toxins.  After the 2 hours, I went back to thinking, “I am well”  and expressing that sentiment to others when asked.

Something happened that I wasn’t expecting.  I felt energized in a new way.   Giving myself compassion and allowing myself to complain about the realities helped move me forward and  accept yet again that things aren’t the way they used to be.   New ideas, dreams and goals have come to me over the past week after I experienced this catharsis.

I would encourage you to give yourself a window of opportunity to allow yourself to feel the pain, anger and frustration of breast cancer.  It will help propel you to a new place!  And if you are not a breast cancer patient but dealing with absolutely anything, try this.  It will help!

If you have not checked my store, Hello Courage, please click the picture and take a look!  I so much appreciate all the love, support, and orders I have received.HC-CollageSign

 

Working through your anger with Breast Cancer and Chemotherapy…

I finally admitted to myself that I feel angry.  What is it the mental health experts say?  Anger is hurt or fear turned inward.  Well, I have enough hurt and fear to fuel alot of anger.  If you are going down the Breast Cancer road, I know you have this fuel as well.

It’s normal, it’s natural, and it will help propel us toward healing.  We need our anger!  So let’s channel it and not deny it!  Will you help me?

A dear friend sent me the above photograph this week that was taken late last summer, one month before I found the lump. Every year, some close high school friends, their kids, and now grandkids and I spend several days at my family cottage.  We laugh, we swim, we reminisce, and we reconnect.   This photo was taken on our last night together on the beach at a local restaurant.   I look at the woman peering back at me.  She is a stranger to me now, and I start to cry.  The first thing I notice is this woman who supposedly is me, is beautiful.    “Why didn’t I know how beautiful I was?” came flying into my mind.    No longer do I see the extra pounds or my imperfections, I only see my radiant beauty flowing from this photo.  I also see my breast that is now missing looking so lovely under my summer shirt.    It doesn’t matter that I am 55 years old and in the middle of menopause.  My breast looked perfect to me in a droopy “it’s summer, you don’t need your best bra on today” sort of way.   Funny, when posting the picture the Blog cut off my breast.

I didn’t appreciate who I was.  I didn’t appreciate the friends that were with me that night.  I didn’t appreciate my hair.  I remember getting ready to go to dinner that night.  I washed my hair.  It’s the cottage, we don’t have alot of hair styling gel there.  That is the way it is supposed to be.  My hair looked kind of straight and straggly to me before I left for the restaurant.  Yet suddenly, in the photo, my hair looks like I just spent the day at the salon.    I feel angry that I no longer have this life and this hair.

And I realized that was the last photo taken of my breast before I lost it to Breast Cancer.  The last photo where I didn’t have to worry if my prothesis is straight, if my boob looks real, are people looking down to see what’s going on where my breast used to be, or didn’t have to worry if a little cleavage stuck out.  I always did appreciate my breasts.  As long as I can remember since being very proud to get a training bra at age 10, I thought they were my best physical feature because I  had big boobs.   I used to think that was important.   I feel angry I lost my breast.

If anger is from fear, then why are we afraid?   Well, we are afraid first and foremost because we wonder if we will live.   That is a priorty to all of us.  We want to live!   And we are afraid because we don’t know if we have the courage to complete this journey.   We are also afraid because we do not have any idea who we are at this particular moment on our Breast Cancer journey.

So let’s talk some more about not knowing who you are.   Your family may be the same, your job may be the same, your friends may be the same, but you are different.  Those words, “You have Breast Cancer” changed everything in your world.

Damn it, we are on this journey.  We cannot change it.  Truly we have no control over it. We have had to turn the control of our bodies over to our surgeons, oncologists, and radiologists.   No wonder we feel angry!

I am going to keep working on this anger.  I don’t have a choice because I know the anger will propel me forward.  And I must continue forward.  I want to live!  And I know you do too!

When your hair starts falling out because of Chemo…how to keep laughing!

So today is the day the hair started to go.  I’ve expected it for 17 days now.  My hair hung on longer than most!  Stubborn just like me!  Let me tell you it is a weird feeling when you reach up, take a small tuft of hair between your fingers, give a gentle tug and it all comes out!   WOW, talk about a new and different experience!!    And your scalp starts hurting a few days before it falls.    I guess it doesn’t want to give the hair up either!

Please cut your hair really, really, really short before it starts to fall out.  I already posted about that experience.  That’s the day I cried.  That’s the day I lost my identity.  But, after you get over all of that trauma, this part then becomes relatively easy.  First of all, while I have my hair short, short, short, I can see gray roots.  Now that is DEFINITELY not my hair!  I’m not sure whose hair it is, but it isn’t mine!

Taking a shower after the hair starts falling is stressful.  I wasn’t sure what would happen.  Is the hair going to just wash off  my head?    Gingerly, I step under the water adjusting the shower head to the gentlest spray.   I put the smallest dab of shampoo on my fingers and hold it there afraid to put it on my hair.   I never even rubbed my hair.  Put a little shampoo on it and rinsed it right off.  It didn’t just fall out in big globs yet, but alot of it showed up on the drain.  Luckily, a friend who had been through chemo and hair loss told me to make sure to get a hair catcher in my shower or I would be calling a Plumber!

I’ve talked about my niece, the hair stylist.   Already, she wants me to shave my head.  I’m not ready yet.  I need a little more fallout!   So we joked about her toddler’s birthday party where the kids will play “Pin the Tale on the Donkey”.  I told her I could sit there and let the kids pull some hair out of my head to be the donkey’s tale.  Now, those kids would never forget that, and it would probably teach them a lesson not to pull Jessica’s or Jack’s hair!!

One thing I can honestly say, is from the day I got the cancer diagnosis I’ve worried and fretted over this day.  Trust me, it isn’t as bad as you think it will be because you’ve had time to prepare.  I’ve had my turbans, wigs, and scaves for a long time now.   Preparation for hair loss  really helps deal with the reality of it all.   So, if you are facing hair loss, cry when you have to, and then move on.  The hair will come back.  It is a renewable resource!  That gives me hope!

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In order to help women with hair loss during cancer and the lessons I’ve learned, I am now selling adorable chemo caps to bring beauty and hope at affordable prices.  I search high and low for lovely caps.  Please check them out – click on pictures!

Click for HelloCOURAGE

Click for HelloCOURAGE


One last thing, your scalp might really hurt while the hair is falling out.  My head would just ache.  I would have to rub my head.  Don’t be concerned.  I guess this is normal.  It goes away!

I just pray that unknown person’s gray hair doesn’t show up back on my head!   Update:  My hair started growing rather quickly after I ended all Chemo.  I had A/C and Taxol.  At 3.5 months after chemo, it is approximately 1 inch long and has thickened up considerably.  My hair came in first in the back, then the sides, and the top was last!  But it really all did fill in.  It is thicker than my previous hair, the texture is different, and my poker straight hair now has a wave.  ONE YEAR LATER:  My hair was back almost like before only my new hair is better than my old hair!  More body, thicker, and a little wavy!  Don’t despair!

Awaiting Chemotherapy during Advent

Chemotherapy scares me.  You’ve heard the stories.  I’ve heard the stories.  Everyone wants to tell me a chemo story now.  Rarely are they anything you want to hear.  I mentioned this to my Oncologist.  He laughed and said, “How do you think I feel at a Christmas Cocktail Party?  All I want to do is have a drink and everyone has a story about how Aunt Millie puked her guts out 35 years ago!”  And we both laughed.  I was glad he drank.  My dad said never trust anyone who doesn’t occasionally have a drink.   My very credentialed Oncologist probably would be surprised to know my trust developed when he talked about a Cocktail Party and not chemotherapy facts.

So it is the week of Christmas.  For me Chemotherapy begins on December 27th.  I’m awaiting the Birth of Jesus and Chemotherapy simultaneously.  How do I align those two events in my life?  Baby Jesus means new life, hope, peace, and new beginnings.  Maybe I can turn the fear of chemotherapy into a positive based on the birth of Jesus.  Just talking about it in such a positive light brings me hope!   I’m going to give it my best shot – no pun intended.   I’ll be letting you know how I do!

“Preparing for Mastectomy”, After Mastectomy and Lymph Node Dissection

Preparing for Mastectomy is stressful, you are grieving, and afraid.  But with a little preparation, it is much easier to endure than you would ever think possible.   I am writing this one week post mastectomy.  My surgery consisted of Modified Radical Mastectomy of the left breast and lymph node dissection of 14 lymph nodes.  One week post surgery I am feeling far better physically and emotionally than I ever dreamed I would!  UPDATE:  I am now two years out from surgery and feeling really good after making it through a year of treatments.

I’ve had alot of time to ponder all of this.  The reason it has been far easier is the preparation I did before surgery.  I suppose it depends on the person as well.  Quiz time:  are you a person who just jumps into the pool without even feeling the water temperature or do you put your toe in first and gradually, slowly and methodically get used to the water? It takes me about 15 minutes to finally get under in a pool or lake.

Moving toward Mastectomy has been like slowly getting into a frigid lake.  And as a result of my planning and preparation, my physical recovery has been much faster because I was emotionally prepared and the frigid lake doesn’t feel quite so cold.  My surgeon’s office offered me a surgery date 24 days sooner than the actual surgery date.  When they called me about the hurried date, I immediately started to cry, my intution yelled “NO” and I had the courage to say, “I am not ready yet.”  The nurse scheduler wisely said, “Then wait.  We treat your whole person, not just the tumor.”  So I then took the later date and am so grateful I did.  I am not recommending you put off surgery indefinitely.  But if you have a choice, give yourself some time to grieve prior to mastectomy if your surgeon will allow it.  I did alot of grieving and crying before surgery over the loss of my breast.  I am grateful I had that time to grieve.  It was a great gift to myself.

If you are one of the 78,000 women per year in the United States who needs a Mastectomy, it seems so overwhelming, you can’t imagine what to do first.  I am going to give you some tips that will definitely help you.

1)   Recuperation Clothing – Clothing is important to us women!  Be prepared to have the right kind of clothing when you leave the hospital for recuperation purposes.  My wisest purchase was a button up the front cotton tunic large and very long.  It also had a pleated front to cover bandages and compression bands.  My lopsided breasts were not so apparent in this blouse.

2)  Mastectomy Camisole – this has been so helpful as itacts as a bra if you have a remaining breast, and comes with soft breast forms for either a single or bilateral mastectomy.  The breast forms are so soft, they can be worn home from the hospital.  Being able to insert your new “breast”, is a real comfort!  Looking good is feeling good.

I am now selling this drain holder in my store – these are essential to have a place to put your drains – click on photo for details!

Drain Holder - holds up to 4 drains

Drain Holder – holds up to 4 drains

 

3) Vest – I purchased a fleece vest in a size larger than I wear from K Mart for $11.99!  This inexpensive purchase has been extremely useful as I placed it over my blouse or pajamas.  It has inside and outside pockets to carry cell phones and other small items, and if you get visitors, it is a great shield.  The vest makes you feel protected and less vulnerable.  This vest has proven to be much better than a cumbersome robe!

4) Mastectomy Pictures –  Look at pictures on the internet of mastectomies and reconstructive surgery to help mentally prepare.  I could not do this alone.  My sister and niece had to help me with this.  Ask for help from a trusted friend or family member.

5)  Recuperation and Healing Space – Prepare your recupertion space.  For me, it has been a Recliner–waking, sleeping, and eating.  It has been so much easier to sleep in the Recliner because of pain.  Have what you need by your space before you leave for the hospital.  Make it a pretty space, a healing space, a loving place with plenty of small tables around and places to grab things easily.  If you share your home with family members, find a corner of your home just for your healing space.

6) Pillows for Car Travel  –   I found the perfect pillow to protect your new incisions after a Mastectomy.  I still use mine to protect my Lymphedema.  THEY ARE WONDERFUL.  I now sell them in my Hello Courage Shop because I believe in them so much.  They were designed by a Breast Cancer Survivor and tested by many breast cancer patients.

Click on pillow for details:

BreastBuddy1

7)Exercises –  You will most likely be assigned post-surgery exercises to regain your mobility in your arm and shoulder areas.  I asked a trusted friend who also is faithful to exercise, to assist me.  She has been invaluable.    There was so much information, I couldn’t handle one more thing.  My friend came before surgery to review the exercises with me, then made an appointment with me the day after I got home from the hospital.  This gave me a purpose to feel better and an incentive to do the exercises.   She visited several more times until I got the routine on my own.  It was like having a Physical Therapist!

8) Incision – A few hours after surgery, my surgeon came in to check the incisions.  She asked me if I wanted to look.  I did.  I would encourage you to do so.  It helps looking with your surgeon. Somehow I was able to separate from my missing breast and look at it as an incision I would have to care for and clean.

9) Mirrors –  Before surgery, cover the bottom portion of your mirrors at home.  I knew I would not be ready to look at a full frontal view of myself.  Looking down is one thing.  Looking in a mirror takes alot more courage.  I taped fabric over all of my mirrors so I can only see my face.  This has been an enormous help!!  It gives you control.  On my largest mirror, I left a space open off to the side so I could peak when I was ready.

I finally looked in the mirror briefly on Day 7 after surgery.  It wasn’t as bad as I had imagined.  God’s grace meets preparation.  My soul feels the same.  I’m still me.  In fact, I think I am more beautiful now.  Before, like most American women, I was always comparing my faults and how  my body didn’t match up to the women in magazines and on television.  Now that definition of beauty has been stripped from me.    But there is a freedom in that difference.

10) Pain Medicine – I asked my surgeon’s office if they would give me my prescriptions a couple of days before surgery, which they did.  This was so helpful as the pain meds were ready for me upon my arrival at home.  I didn’t have to send someone to the pharmacy and wait for them to arrive.  And speaking of pain medicine, take it!  My surgeon explained to me if your body uses the energy to fight pain, it takes longer to heal.  Once this was explained to me, it made sense and took away my fear of pain medicines .  Also, be sure to purchase a stool softener like Collace or Dulcolax when you purchase the pain meds to avoid constipation.  They really work!  Also, have high fiber foods at home ready for you like oatmeal and granola.

These 10 things have made my recuperation and healing so much easier!  It was alot of work before surgery, but it kept my mind busy.  Also, if you are having financial challenges as Breast Cancer is expensive, when one of your friends or family ask, “what can I do for you?”, tell them you need travel pillows, a cotton blouse, or a fleece vest.   Your friends and family want to help.  Why not ask them to purchase something you need that will assist you in your recovery?

Please feel free to contact me with any other questions!  I will be happy to answer any questions and provide a listening ear.