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.

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.

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!

The Financial Burdens of Cancer – Part 1

If you were recently diagnosed with cancer, the feelings are absolutely overwhelming.  The ongoing thoughts that go through your mind after whether you will live or die, are finances.  Will I lose my job, will my insurance cover my medical expenses, who will take care of my family, will I have to file bankruptcy, will I have to go on welfare, will I lose my house, my car, will I ever be able to work again and the playlist continues over and over in your head.  It is beyond terrifying.

When I was diagnosed, I felt all of those feelings as I was single and self-employed without any sick time or short and/or long term disability benefits.  Looking back with the old, “If I knew then what I know now”, I give this wisdom and advice:

1)  INSURANCE:  Most of us have absolutely no idea of what insurance coverage we have for a catastrophic illness like cancer.  Who knows if your insurance will cover all chemotherapy drugs (some are $20,000 or more per infusion!), blood transfusions, port placement, for example, the drug Herceptin for one year ($60,000), or a compression sleeve?  Most of us never even heard  these words before diagnosis.   Ask your hospital to check with your insurance company to make sure they are “in network” before you start treatment.

I made the decision to go out-of-town to the University of Michigan Cancer Center because I felt my life depended upon it.  When I called my insurance company, they said University of Michigan was out of network, and I would have to pay 40% of my medical bills, which would have resulted in over $100,000 or more of additional medical expenses. YIKES!  I called the insurance office at the University of Michigan Cancer Center for their help.  Within days, with their help in convincing my insurance company I needed their care, my insurance company agreed to pay my medical bills 100% except for deductibles and considered that hospital “in network”.  LET SOMEONE ELSE FIGHT THIS BATTLE.  If you go to a large hospital, they have staff that deal with the insurance companies so you don’t have to do so!

Also, because I did not have prescription drug coverage, the Neulasta shot was not covered.  Neulasta helps increase your blood counts after chemotherapy and costs on average $4,000 to $9,000 PER SHOT!!  A cancer patient may need as few as 4 or many, many more shots!   However, my hospital said if they administered the shot the next day with me as an out-patient, it would be covered.  It entailed my driving another 120 miles round trip on the day after treatment, but it saved me $36,000 for the four shots I needed!!

There are also very expensive anti-nausea meds, Emend, which costs $100.00 per pill.  If you do not have prescription drug coverage, the hospital can give it to you intravenously which has a much longer effect, and then most insurances will cover it.

There is a program for cancer patients who have high co-pays for drugs such as Neulasta or Neupegon – if you have high copays, check this out for help in paying those co-pays:  https://amgenfirststep.com/

2)  HELP: Ask your most detail-oriented and computer savvy friend to help you find what services are available to cancer patients in your area. Upon diagnosis, friends and family ask how they can help you.  PLEASE take them up on their offers as you need to practice this new and difficult skill of accepting help.    Many don’t qualify for state welfare benefits, but other help is available no matter how small.  It all helps!  For example, I just learned that in my city there is a new program for cancer patients and their families called Nightingale Harvest. The only requirement is that you are in active treatment.  You need a note from your Oncologist–then they provide food, cleaning supples and toiletries to the cancer patient and family throughout treatment free of charge.  What a marvelous charity!

While I was undergoing chemotherapy,  my hospital put me in touch with an organization that gave me $300.00 in gas cards based on miles driven to and from treatment.  Their only qualification – undergoing cancer treatment.  I will never forget their kindness.  It still brings tears to my eyes when I think about it.

Here is a compilation of numerous organizations that provide help to cancer patients:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

3)  BEYOND HELP – If you are in a situation such as you have no insurance coverage, have no savings, lost your job, or any other dire situation, let friends and family help by either setting up a fundraiser or an online fundraiser such as http://www.gofundme.com   or  www.youcaring.com   to raise money for you and your family.   Please don’t be too proud, as people do want to help you!

4)  CLEANING – Most cancer patients have very little energy and especially no energy to clean your house.  Cleaning for a Reason is a service in the USA and Canada providing cleaning services to cancer patients while in treatment. http://www.cleaningforareason.org/

5)  MEALS – The best thing friends and family can provide are meals with food a cancer patient can eat.  This varies from person to person.  This website offers a free calendar where friends and family can sign up to bring meals to the cancer patient, and then sends email reminders to the patient and the food preparer!   www.mylifeline.org

6)  PERSONAL CARE – Many organizations offer things such as massages, reflexology, relaxation, emotional health, and other classes for cancer patients and their families.  The hospital where I received radiation treatment, provided me with a weekly massage at no charge.  It was a great comfort to me.

7) FAMILY TIME – One amazing organization, Little Pink Houses of Hope, provide vacations to breast cancer patients and their families.  For more information, go to:   https://www.littlepink.org

8) AMERICAN CANCER SOCIETY –  http://www.cancer.org  The American Cancer Society will put you in touch with help.  They also offer a free program for female cancer patients…Look Good, Feel Better.   http://www.lookgoodfeelbetter.org    I attended and it helped so much!  They provided makeup and skills to help you cope during treatment, like how to draw in eyebrows.  I HIGHLY recommend attendance at this free class.

You will make it through and things will get better.  But in the meantime, ask for help and accept help to relieve some of the financial burdens of cancer.

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I offer chemo hats for every budget and keep my profit margin low to help others – please check them out at http://www.hellocourage.com    

Scanxiety, Mammograms, and Cancerversaries

This week was my yearly mammogram and also my 6 month checkup with my Oncologist.   This week marks my THREE YEAR cancerversary from diagnosis of Stage 3, Her 2 Positive Breast Cancer, very large tumor with 9 positive nodes.  So often I hear from women who wonder if there is something wrong with them that they have so much anxiety before scans, mammograms and tests!  Absolutely not!  It is all NORMAL!!

As I was driving the 70 minute drive to get the mammogram this morning, I once again realized just how normal it was. .  That anxiety never gets better, but at least it is more familiar as the years go by.  Like an old acquaintance that you have a meeting with and walk away thinking, “Oh, that’s why we were never friends!”   Today when the anxiety arrived, right on schedule, I thought, “Well, here you are again.  Okay, what if it is breast cancer?  You know what to do, you know what to expect, and you know you will either get through it or die.”  And the other thoughts also arrived on time:  “Why didn’t you just get that breast cut off – no breast is worth this much anxiety, just turn around and go home, call the Breast Cancer Center and tell them you had a flat tire, and then finally as you get closer, the hell with it, I’ll just get it over with today!”

My nerves were kind of under control as I put on the oh-so-familiar teal gown (why haven’t they gotten new gowns here yet?!?) after I stripped to the waist.  I’m much more vocal now in the waiting room than the previous years.  I start asking who the survivors are, and they are eager to talk!  It is 90% of the waiting room because we are in a Cancer Center.  It makes the reality of what we are waiting for seem less frightening and there is an instant bond without too many words.

When my name was called, the nice technician talked to me and then told me her best friend was just diagnosed.  She began asking questions, and I began giving her tips to tell her friend as she plops my breast on the machine.  Silly thoughts go through my head — like after the first squeeze I remembered to lift my breast up rather than pull it off the platform because the skin sticks!  I’m applauding myself for remembering from last year!   Soon it is over, and I try to read the tech’s face.  But all I remember is the face of the technician from 3 years ago whose mouth literally dropped when she looked at those cancer-ridden pictures, and though she tried to recover in a professional manner, her face is still is embedded in my head.

Back to the waiting room…I start talking to myself and bargaining. This time without quotation marks!  Okay, I won’t worry for 10 minutes.  They usually have the results in 10 minutes.  If it is longer than 10 minutes, then I will worry.

Kelly Ripa is on the television in the waiting room doing something ridiculous, and I wonder why anyone really likes her.  Then I chastise myself because my old and dear friend, Cathy, loves her, but I think: how can she watch this TV show?  The 10 minutes are up.  OH Lord, please help me, and His peace descends upon me.  Really.  I felt it.  The door opens and a solemn-faced woman about my age calls my name.  In my head I think, gosh, I need to smile more so I don’t get like that and then she says, “I can’t tell you the results in the hallway because of HIPPA” and I’m thinking it is BAD news because last year the woman blurted it out in the hallway.  But we get to the room and her face broke into a smile and she said, “All is well” as she handed me the “ALL CLEAR” letter signed by a real doctor.   I always grab the letter and look at the signature to make sure it says “MD” after the signature! I immediately just grabbed and hugged her and hugged everyone coming down the hallway.  Then I think, Denise, you do that every year, you need a new routine, then I think, who the heck cares – I can’t help it.  Then I tell the techs gathered in the hallway that this is the worst day and the best day of the year all before 9:45 am.

When that paper is handed to you and you hear those words, it is like God is handing you a beautifully wrapped present and in it is your life for another year as you hear a choir of angels in the background.  You think of the magnitude of that gift, look at that package, and tell God, “Thank you for my life.  I don’t want to screw it up.  Tell me what you want me to do this year, and I will do it.”

And I enter back into the waiting room.  Kelly Ripa is still on the television and this time I think:  Kelly is friendly, cute and she is kind of zany.  I understand why people watch her.

Asking for Help During Breast Cancer Treatment

Recently, I received a letter from Brenda in North Carolina.  Brenda recently completed chemo, had a double mastectomy less than three weeks ago, and is ready to begin radiation.  She hired a cleaning woman to help her clean because her husband isn’t a detail kind of guy.  Brenda felt guilty she had to hire someone to clean, but had to give in because she was not capable!

Her words made me ponder this.  Why is it so difficult for us to admit we need help even at the most difficult time in our lives, and when we do, we still feel guilty!?!   Most women tell me they lose their “cleaning desire” after cancer because they realize it just isn’t that important, so I told Brenda “Enjoy every moment of that AHHH feeling you get when someone else cleans your home!”

Brenda isn’t the first woman who has written me about those issues.  Many women have written me after cancer treatment ends and tell me that they wish they would not have been so proud during cancer treatment.  They wished they would have asked and received more help when friends and family offered.

Absolutely the toughest lesson I had to learn during treatment was asking for help.  It was not easy, but often I had no choice.    My sister had been telling me for months, “Let me come and clean your house.”   Finally, I had to say yes.  Even then, I helped her.  It made me feel more capable because I had her help and assistance.  I remember that day with so much fondness.  It meant so much to me.

My friend, Judy, called and offered to pick up groceries or take me to the grocery store every week.  I had no choice to take her up on her offers on several occasions.   It was so difficult to say yes, I need help. But I will never forget her kindnesses.

One non-profit organization, Cleaning for a Reason   http://www.cleaningforareason.org takes applications from breast cancer patients who need help cleaning their homes.  I have heard good reports about this organization who provides services in the United States and Canada.

Never will I forget some words my Oncologist spoke to me after my before my first chemo treatment.  He said, “Now is not the time to be a heroine.  There will be plenty of time for that once treatment ends.  Now is the time to ask for help.”

 

 

 

 

 

My Mom Had Breast Cancer at age 80

Many of you have been writing to ask how my mom is doing.  Mom, a very active 80-year-old that can run circles around most 50 year olds, found a lump in her breast and was diagnosed with Breast Cancer.  Thankfully, she listened to me when I asked her if she was doing breast self-exams, did one, and found it.  The doctors were amazed she found the lump because it was rather small, and they had difficulty finding it.  She said that it wasn’t so much the lump but she noticed a difference in her breast tissue – it felt very hard. Thankfully, she knew her body!

Breast Cancer at age 80 with no family history of any kind of cancer was a shock to my mom and our entire family.   But overall, it has been good news for which we are all grateful.

• Mom’s breast cancer was estrogen positive, progesterone positive, and Her2 Negative.
• Her lump was 1.7 centimeters – Stage 1, Grade 2.
• She had a Lumpectomy on June 26, 2014.  It took about 4 weeks for her to feel really good again and be without pain.
• The Radiation Oncologist and Oncologist presented the facts to mom and me.  No one recommended chemo.  There was an 8% reduction in chance of recurrence if she did Radiation, but she decided against it.  All the doctors concurred that at her age that was the best decision.
• She is awaiting results from the Dexi Bone Density Scan to see if she can start Arimidex.  I am hoping she can tolerate it because Arimidex cuts your risk of recurrence by up to 50%.

Breast cancer is still breast cancer at whatever age, whatever stage, and is extremely frightening and devastating.   The fear of recurrence is present no matter what, and it is something you have to learn to coexist with on a daily basis.

My mom’s post-lumpectomy breast looks no different from her before breast cancer breast.   It is not sunk in, has no deformity, and other than the 2.5 inch scar that is already starting to fade, that fact is quite amazing to me.   A surgeon’s experience plays into this greatly.  I am always preaching to women to make sure they go to a BREAST SURGEON that only does breast surgeries.  Dr. Jessica Bensenhaver, the surgeon who did my mom’s Lumpectomy, is at the University of Michigan.  I asked Dr. Bensenhaver how many breast surgeries she did in the past year.  Her response, “I have done over 300 this year and did over 300 the previous year.”    That is a lot of experience.  It is also extremely beneficial to have surgery at a cancer center that has the ability to test the tumor margins while the patient is in surgery.  This greatly lessens the chance of having to have yet another surgery to clear those margins!

Studies show that women who have had surgery by a breast surgeon have less rate of recurrence than those who had a general surgeon.  That is certainly something to consider and take seriously.

Thank you for your thoughts and prayers for my mom.  We are all grateful.  And make sure you tell the elderly women in your life not to stop getting those mammograms!

 

 

 

My Mom Has Breast Cancer. . .and Why Elderly Women Need Mammograms

My 80 year old mom (who is more like a 50 year old energy wise) was diagnosed with Breast Cancer during last week.   It has been quite the emotional roller coaster ride for our entire family.   We all felt overwhelmed by the thoughts “Here we go again!”  But today I have good news to report as breast cancer goes.

After spending all day at the University of Michigan meeting with surgeons, radiologists, oncology, etc., mom got great news.  Her cancer is Grade 1, very slow growing, a small 1.5 cm tumor, no lymph nodes, no chemo, 90% estrogen positive, and most likely no radiation, however, they won’t know that for sure until after surgery.  She will have a wire-guided Lumpectomy in about 3 weeks with no drains.  Mom was so relieved about that as she helped me with my drains and hated them!   The surgeon indicated it was miraculous mom ever found the lump.

Mom’s parents lived into their 90s, aunts that lived to be 97, and no cancer ever in generations of  family members on her paternal and maternal sides.    Mom has eaten a healthy diet, been extremely active, and weighs within 10 pounds of her weight when she was in her 20s!  If my mom got it, anyone is at risk.  Well, we know that, but this makes it more clear to me!

The genetics counselor thinks it is rather a fluke that both of us got breast cancer, but it sure makes me wonder about environmental factors.  I had far more reason to have breast cancer as my dad’s side of the family has cancer everywhere.  But mom, they have no idea.

Here is what I can pass on to you that I have learned thus far.

1.  Breast cancer odds greatly increase with age.  As the nurse navigator conveyed to us, breast cancer amps up with age.  She said that so many women feel like once they have reached 65 or 70, they quit having mammograms as they feel their odds go down.  That is WRONG information.  Some older women will tell you they don’t want to look for anything.  Relay to them how early stage breast cancer is far easier to deal with than later stage!  Know your facts and make every attempt to get the elderly women in your life to get their mammograms!  

2.  Be sure to be extra nice and appreciative to your Oncologist!  You never know when you may need them again!   Send them and their staff cards of thanks and appreciation, take simple gifts into their office like candy or cookies or vegetables, or whatever!  It is meaningful to them.   I made one call to my Oncologist, and he and his staff bent over backwards to help my mom.  Make yourself memorable in a positive way to your Oncologist and his or her staff.

3.  Remind your moms, grandmothers, aunts and older women in your life (well, younger ones too) to do regular breast exams.  Show them how and what to do.   My mom accompanied me to my last Oncology checkup in April.  On the drive back home, I casually asked my mom if she was doing regular breast self-exams.  She said she was not and had not done one in awhile.  Later that week, she did one, and found an area of change in her breast which caused her alarm.  That is what got her to the doctor!   There was a lump underneath that breast change!  Thank God she found it when she did!

4.  One of the most difficult things about breast cancer is having to figure out what to do.  Now that we have been through it, we know.  That makes the journey much easier to help someone else.  If you are emotionally up to it, reach out and help someone else just starting the journey.  Your input will be invaluable to them.

That is what I’ve learned thus far!  Thanks for letting me share!   I appreciate all of my readers so much!   Love to you all!

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Check out my new Sun Hat Collection at http://www.hellocourage.com !  You don’t have to be bald to wear these, but you can be!