The Gift of Understanding during Chemotherapy and Cancer Treatment

In my darkest hours of Chemotherapy,  God brought me those rare individuals who really knew and understood the depths of what I was enduring.  Those days and people are so important to me,they are permanently etched on my mind.  I pray that if you are going through Chemotherapy, God brings you the right people to uplift your spirits and give you hope.

1)  Dr. Daniel F. Hayes, M. D. my Oncologist at the University of Michigan: I told Dr. Hayes that I couldn’t continue Chemotherapy when I was about 6 weeks into 22 weeks of Chemo.  It was too difficult and challenging I told him, and I would rather die.  He told me that he wouldn’t let me.  I told him I had no control over my life.  He said that’s because he controls my life.  Then he sat down with me, held my hand in a doctorly fashion, and proceeded to give me understanding by telling me how amazing I have done, how brave I am, and how challenging this road is.  He then told me about a friend of his who endured Adriamiacyn Chemotherapy in the early days before nausea meds.  Then he had me laughing.  When I left his office, I cried and knew I had the courage to continue.  I am so blessed to have such a wise Oncologist.

Please check out my store www.hellocourage.com  and cute chemo caps – they are important to feeling good!  Click on cap below:

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2)  Ellen, the elderly lady in the Ladies Restroom at Chemo Infusion Area. I held the door open for her going into the Ladies Restroom.  We both were wheeling around intravenous infusion drugs with those awkward tall, metal hooks with wheels and hanging drugs. We were both trying to maneuver in the tight space in the bathrooms.  I asked Ellen if she was getting Chemo.  She told me no,  she was receiving bone strengthening drugs.  Then Ellen started telling me her story.  Ellen said she was 83 years old.   She told me to never give up.  She then told me she was diagnosed with Stage IV Breast Cancer and had been given less than 6 months to live.  Then she came to the University of Michigan.  She has been alive 9 years.  She then told me she knows how hard it is, how difficult and challenging the road is, and how lonely it can be.   I started crying in her midst.  But Ellen gave me the gift of hope.

3) Nancy in Chemo area. I will never forget Nancy.  Nancy sat next to me in Chemo. You couldn’t help but talk to Nancy.  Nancy told me she was given less than 4 months to live because of Stage IV Breast Cancer.  She came to the University of Michigan hoping to live a little longer.  It is now 19 years later !  Nancy is still going strong living with Stage IV cancer.  On the day I met Nancy, she was telling the chemo nurses what to do and how to do it!  She gave me a pep talk like I had never had before, and in the midst of the cheerleading, told me the painful realities of never giving up!    She shared her other trials like her husband leaving her.  She found the positive in all of it, yet gave me compassion, strength and understanding.

4) Dr. Wayne Court, M.D. Toledothe University of Michigan told me I could receive radiation in Toledo.  When I got to Toledo St. Anne’s and met Dr. Court, I knew I was in the right place.  Dr. Court was so kind and understanding.  He clearly outlined all that I had been through, and although he was doing his job, he did it well.  Compassion can’t be faked.  Dr. Court had genuine compassion and gave me the courage to go on with Radiation Therapy.

5)  The nameless young woman in the Chemo Infusion Area, only 28 years old, who had been given less than 6 months to live when she was 21 years old.  She had been misdiagnosed with back trouble, until the Breast Cancer ate through her spine.  She interviewed several Oncologists and chose Dr. Hayes, my Oncologist.  She has been alive 7 years now with Stage IV.  She and her husband were leaving the next day after Chemo to visit her grandmother in Florida.  This young woman gave me much encouragement and many tips to keep going.   When she left, I realized I didn’t know her name.   But I will never forget her!

6)  Amanda was a woman I also met in the Chemo Infusion Area.  Amanda was going through Adriamycin Cytoxan Chemo, and I had moved on to Taxol.  Amanda was very ill and having a rough time of it.  I tried to give her understanding and encouragement.  Then she told me she was training to swim the English Channel in a relay to raise money for Lou Gehrig’s Disease (ALS).  She was training while going through Chemo. On her good days she would go to the pool and train.  I told her I couldn’t even walk to my mailbox!  On July 27, 2012, just 3 weeks out from her last Chemo treatment, Amanda and her teammates swam the English Channel and set a new world record!!!

I cherish each and every one of these special people who were brought to me at just the right moments.  I know such inspirational people will be brought to you as well.  Don’t be afraid to talk with strangers.  Angels appear when you need them the most.

Being Saintly, Holy or Religious during Cancer Treatment

As a practicing Roman Catholic, I have read countless stories about saints, have prayed to saints to ask their prayerful assistance, have celebrated the feast days of saints, and always thought I had what it took to be a saint.  That’s because I was a bit of a religious snob as well.

When I was diagnosed with Stage 3 Breast Cancer while the doctors were on the lookout for Stage 4, my saintly thoughts went out the window.  I did not want to die and go be with the Lord, I was not very saintly, and fear was my main emotion.   But, I went through Cancer Treatment of mastectomy surgery, chemotherapy and radiation and have arrived at the other side almost a year later.  There was much suffering .  I cannot begin to explain how much, but if you are a cancer patient, you know.  If suffering is the only criteria to being a saint, cancer patients are on their way.

But my relationship with God changed.  I used to think I had some answers about God.  Suddenly, I knew I had none.  The only place I could find God was to relegate Jesus to my La-Z-Boy Recliner.   When I was so ill that all I could do was lie on my couch with barely enough strength to go to the bathroom, I found comfort in picturing Jesus sitting across from me in the La-Z-Boy Recliner.  When I would awaken terrified in the middle of the night because of some new side effect, I would glance over and picture Jesus sitting next to me just watching over me in the darkness.

When my hair was falling out because of chemo and hair would be all over my pillow, I pictured Jesus reaching over from the recliner and placing His hands on my bald head to bring me comfort and solace.  When few people understood or if insensitive things were said to me, Jesus would cry with me.

I was not able to go to church because of very low blood counts and cold and flu season.  So Jesus and I would sit together on Sunday mornings, He on the La-Z-Boy and I on my couch.

It was rare that I would be able to have conversations with Jesus.  Mostly I just felt His presence surrounding and protecting me.  I did not ask to be healed, but I felt the healing.  Eventually, I quit holding Jesus hostage as I started to feel better.  I told Him it was okay to leave for awhile and take a little break as I began to feel stronger.  He would leave for a few hours, but when it was time for me to fall asleep, I would look over and knew He was back.

One day a friend of mine told me that when she had a brain tumor, her 5 children were very young.  She said as she was healing from brain surgery, the only place she could find solace was to go sit in the car.  She would picture Jesus along side of her.  I then shared my Jesus in the La-Z-Boy story.  We both understood through our tears.

If you find your relationship with God challenging because of cancer or other reasons, if you can’t pray in your old ways, or if you have never prayed and you can’t seem to find God anywhere, I invite you to try my approach.   He likes any kind of chairs, but prefers recliners!

Fears about Adriamycin Cytoxan A/C Chemo

Adriamycin Cytoxan Chemotherapy is how thousands of people get directed to my Blog.  One of my top searches is from people ready to start Adriamycin Cytoxan Chemo who are afraid.   I was absolutely terrified so I completely understand.  The day I began A/C Chemo was the most frightening day of my life.  I knew it was not nicknamed “Red Devil” and “Red Death” for nothing.

Before I began A/C Chemo my fears were that I would die during the first infusion, that I would become so nauseated I wouldn’t be able to make it home without vomiting, and that I would be knocked out from fatigue before I even left the chemo area.  None of those fears proved to be true.

Here is what I wish I knew before I started Adriamycin Cytoxan Chemotherapy:

1)  When you get to the Chemo Infusion area, it is nicer than you imagine.  The hospitals and breast centers try to make it really comfortable for the patient.  The Chemo Nurses are fabulous and especially on your first chemo infusion, they are practically glued to your side explaining what is going to happen to help you eliminate your fears.

2)  There are numerous preliminary drugs administered via IV before Adriamycin is given.  These are anti-anxiety drugs, anti-nausea drugs, steroids and allergy drugs.  They gave me Ativan which did help relax me a little.  I wish I would have had it for a week before I started chemo.

3)  Many precautions are taken by the Chemo Nurses to make sure you are getting the correct drugs.  You will be asked your name and date of birth many, many times.  Plus, an additional nurse comes in to check and recheck your drugs and dosage.  I always asked to see the drugs themselves to triple check.  No one minded at all and at my infusion center at the University of Michigan.  They were happy I cared about my treatment.

4)  When the nurse comes to administer A/C Chemo, she will have a cap, gown, and gloves on.  This is to protect her.  It is a normal procedure, but is a little bit scarey to see.  The Adriamycin is red in color and will be administered from tubes directly into your port or veins.  The Chemo nurses are well trained.   The dosage you receive will be based upon your weight and body mass.  They are always checking your weight pre-chemo to make sure you haven’t lost or gained weight which would change your dosage.

5)  I did not feel anything right away while the drug was being administered.  The Chemo Nurse warned me when I went to the bathroom, the A/C would turn my urine pinkish red.  I always have to go to the bathroom especially when being given IV drugs.  My urine turned pink right away and this lastest for 24 hours.  They told me to flush the toilet with the lid down at least twice, wipe off the toilet seat, and then to wash my hands with soap for 25 seconds.  If you are sharing a toilet with other family members, take appropriate precautions.

6)  They gave me food during A/C chemo like bagels and juice.  I can’t stand bagels anymore, but that is another issue!  They also gave me ice chips.  Eating ice chips during chemo cuts down on mouth sores.  And most of all, DRINK WATER, DRINK WATER, DRINK WATER!!  Drink at least 8 glasses of water the day before, the day of, and the days after Chemo.  It helps get the toxins out quickly.  The Chemo Nurse told me the A/C Chemo does its work almost instantly.

7)  I was at the infusion center 4 to 5 hours during A/C chemo on average.

8)  When the chemo was finished, they released me immediately.  I knew I had to come back for the Neulasta shot (to keep up the blood counts) on the next day.  Also, they had given me several anti-nausea meds to take if I felt ill.

9)  Because of the steroids, you feel pretty darn good the first couple of days, energetic and kind of hyper.  At least I did.  I did not feel any nausea until Day 3 after the drugs.  Then I immediately began the anti-nausea meds at the first sign of any nausea.

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Because I had a hard time finding cute chemo caps all in one place, I started a store –   http://www.hellocourage.com    Please check out my store and cute chemo caps.  Also, another favorite of customers is the Breast Pillow which protects your Chemo Port and surgery site while riding in the car!  I still use mine everyday!

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10)  I had a little bit of a headache the first night after A/C, but I did sleep.  I remember thinking, “What if I don’t wake up?”  It was still very frightening as I did not know what to expect.

11)  The next day I felt very energetic, a little drugged, but overall, okay.  The Neulasta shot  stings when they give you the shot, but that is fleeting.  Some people experience bone pain from the Neulasta shot.  Talk to your Oncologist about this.  I was able to take Motrin to help with the bone pain.

12)  I wish I could minimize the side effects, but I cannot.  EVERYONE IS DIFFERENT.I had many side effects.  Some would last only a day.  Others were for the duration.  Extreme fatigue is usually something most everyone has.  I was tired during #1 A/C, but didn’t get extreme fatigue until #2.    Also, I had dose dense A/C (every 2 weeks).  Many people get A/C every 3 weeks, which gives you more recuperation time.  I wish I could sugar coat the side effects.  I cannot.  But amazingly, they get better rather quickly once you are finished.

13)  For me, side effects were more cumulative.  I started slowly and they got progressively worse during the 4 A/C treatments.  One important thing to remember, the steroids and strong chemo drugs affect your brain and your moods.  Don’t be alarmed if you feel mean, angry or depressed.  IT WILL GO AWAY!  Prepare your family and friends for this.  I wrote a separate post about Mood Swings.

14)  While you are in the middle of A/C, you swear it will never end.  Many times, I wanted to quit it and didn’t care if I lived or died.  Those are the cold, hard facts.  You may feel that way, you may not.  If you do, feel the feelings.  You are not alone in these feelings. But you feel so alone because NO ONE UNDERSTANDS unless they have gone through Adriamycin Chemotherapy.  Even the most understanding people, cannot relate to what you are enduring.

Most people who have gone through Adriamycin have felt all these emotions.  You can get through it one day at a time.  That is such an overused phrase, but it is so true in this case.  And memories of it will fade.  I promise!

15)  One important thing to remember about side effects.  Call your Oncologist immediately if something happens that really feels scarey.  I was told to make sure I didn’t have a temperature.   My face became very, very red for 3 days after A/C chemo and burning hot.  No one warned me about it.  It seemed kind of extreme.  I called the oncology nurse. She told me to keep taking my temperature.  If it was normal, don’t worry as my face was just turning red from the steroids, not an infection.  Thankfully, it was just from the steroids.

16)  Food and A/C is really weird.  You will get very strange cravings.  For one solid week, 3 meals a day all I could eat or wanted to eat was cereal with peanut butter.  Do not eat your favorite foods as I guarantee you won’t like them if you eat them during chemo.  It seems many people going through A/C chemo crave white foods – especially carbs – potatoes, bread, pancakes, and noodles.  It is very strange and odd. Make sure to get your protein in.  I mostly ate cottage cheese and peanut butter.  Meats did not work for me, but they may for you.  Within a couple of weeks after you end A/C chemo, your normal appetite will return.

I hope this helps eliminate some of the fears of Adriamycin Cytoxan Chemotherapy.  It is an extremely terrifying, difficult and challenging road to get through, but you can do it.   If I can, you can because I couldn’t even stand to have a blood test before I went through cancer treatment.  I have become strong!  You will too!

Lymphedema, Lymph Nodes and Breast Cancer

Lymphedema is a dreaded word for women who have had lymph node involvement  and removal during their Breast Cancer.   Lymphedema is described as:   “Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment.  Lymphedema can cause long-term physical, psychological, and social problems for patients. ”

I am one of them.   Some women have difficulties right away, others have none or it can hit years later.  Mild Lymphedema happened to me immediately, then got progressively worse.  I had 14 lymph nodes removed.  The greater the amount of lymph nodes removed, the greater risk for Lymphedema.  Before I sought treatment, my arm would be 1 to 2 inches larger around than my other arm.

At first Lymphedema is just another overwhelming thing to think about and deal with when you are already on overload with Breast Cancer and treatment.  But with appropriate care, it truly can become a manageable situation.  My Lymphedema is under control since I have learned how to self-massage, wear my sleeve or wrap my arm when I fly in an airplane or do repetitive work (like gardening, trimming trees, raking, shoveling snow, using the sweeper, heavy cleaning and lifting, etc.) I also see a Lymphedema Therapist/Specialist two to four times monthly for massage and treatment.

Recently, I met two women who began suffering with Lymphedema after no one told them it was necessary to wrap your arm or wear a Lymphedema Compression Sleeve when flying. One was a nurse who was a 10 year Breast Cancer Survivor.  She thought after all that time she would not be afflicted.  The other woman was less than one year out from surgery, but no one told her about compression and flying in an airplane.   So if anyone tells you that you don’t need to do this while flying, don’t believe them!  There are studies out there that say it is not necessary.  But these women certainly convinced me!

Here is my advice:

1)  Find a Lymphedema Class – many hospitals and Breast Cancer Centers offer these classes to educate patients at risk for Lymphedema.  I have attended two free classes at two different hospitals, and the information given was invaluable to me. If you live in a small town, call the largest hospital or breast care center in the closest larger city.  It would be worth the trip to attend a class.  If they don’t have a class scheduled, ask them if they would consider having one.

2)  Locate a Certified Lymphedema Specialist – I found mine at my local hospital.  She is a gem and has given me so much knowledge and help!  Call the Physical Therapy departments at local hospitals to see if they have one.  Unfortunately, there is not an internet central registry that I am aware.

3)  If you have trouble locating a Certified Lymphedema Specialist, contact your local Breast Cancer Support group or ask your Oncologist or Surgeon.  Don’t expect your Oncologist or Surgeon to tell you – they may not even talk about Lymphedema to you.

3)  Check if your insurance company will pay for visits to a Lymphedema Specialist – mine are covered under Occupational Therapy.  If it is not covered, find out if you can affordably visit a Lymphedema Specialist to answer questions, teach you self-massage, and exercises.

4)  Do your self-massage daily or when needed.

5)  Do your exercises daily.  I was given a list of exercises by my Lymphedema Specialist and try to do them faithfully.

6)  If you are going to undergo Radiation Treatment, your body becomes even more sensitive to Lymphedema.  My hospital provided a massage therapist to help the lymph system during this time.

7)  Have your Lymphedema Specialist measure your arm, or if you can’t afford one or if insurance does not pay, keep regular measurements of your arm.  Measure your hand, your wrist, midway between wrist and elbox, and 2 places in upper arm.  Compare these measurements with your unaffected arm.

8)  If you are going to fly in an airplane, even short trips, it is necessary to wear a compression sleeve or wrap it correctly.  If you have a 2 hour plane trip, you are to wear the sleeve or wrappings for the duration of the plane trip, then for 2 hours after you land.

If you are prone or suffering from Lymphedema, it is necessary to prevent infection in that limb.  For example, wear gloves when doing yard work, wear insect repellant to avoid insect bites, and carry anti-bacterial or neosporin with you if you get a cut.  You want to avoid infection that could lead to cellulitis or something even more serious.

Lymphedema has become a way of life for me.  I elevate my arm when I sleep which helps me.    And since I am a gardener, I have finally learned my lesson.  I usually get a cutter in my hand and before I know it, the tree or plant is trimmed.  Not any more.  I have suffered enough after these episodes, so I wear my sleeve now!

If you are overwhelmed by it all, don’t despair.  It does get better with knowledge, education and time.  There is hope and healing for this misunderstood challenge.

What is the New Normal after Breast Cancer Treatment?

Today, an old friend called to check on me.  She asked how I was.  I explained the severe Radiation burns, peeling skin, open sores, heart issues, but overall, I am getting better.  Then she said, “Sounds like you are getting back to normal.”    Immediately, out of my mouth came this:

“There is no normal, there is no going back, I am not the same person I was, and I have no idea who I am.”    I apologized for kind of jumping on her, but it is obviously a sensitive area to me.    And it is a good question to ponder.  If I could go back, would I go back?  The answer is no.  The last 11 months have been one huge learning experience.  I told someone I learned more in the last 11 months than I did in the previous 55 years leading up to Breast Cancer.  It isn’t the learning about the Breast Cancer that is the learning part, although that certainly contributes.  It is the learning about life, relationships, God, health, and what is important.

Breast Cancer has changed the way I think about almost everything–religion, politics, education, health, food, diet, friends, enemies, and the list goes on…    So based upon that alone, it is impossible to go back.  Oh sure, absolutely I am still Denise.  But in some ways even with a broken but healing body, I am a new Denise.   It is evident in my cells…old cells have died, new cells in their place.   Old hair is gone, new hair in its place.

I’ve started to go “topless” which in the breast cancer community means going without my wig.  A year ago I would have never considered going anywhere with the little bit of hair I now have on my head.  Now it is a cause for celebration.   I had to go to a social event on Saturday where I always used to worry about what I looked like to others.  This year, it didn’t matter to me in the least.  Of course, I wanted to look attractive and presentable, but no longer did my thoughts go to, “how do I look?”   I know I look the best I can today.  And that is all I have.

I used to worry about what people think of me.  That never even crosses my mind now.  It really makes no difference what people think of me.  I know who I am, and that is what matters.  Let anyone think what they want to think.  It is their brain.  And I freed my own brain from that limited thinking.

And so it all begins.  Deciphering who I am.  It is a great thing!  I am celebrating this time because it is cause for celebration.  A birth is taking place.

Top 10 Lessons Learned during Breast Cancer Treatment

After 11 months of diagnosis, surgery, chemotherapy and radiation for Breast Cancer, it is a time for me to summarize what I’ve learned.   Here is my Top Ten list.

1) There is more to being positive than slapping a smiley face on a life or death health crisis.  

Being positive during Cancer Treatment is having good days and horrible days.  It means accepting yourself where you are on any given day.  It means knowing you have the inner strength to hang on and get through it, even though some days you doubt it.

Being positive means you have hope for a good outcome when all of this horror is done, even when no one understands what you are going through.

2)  Having the right medical team is essential.  If you don’t feel you have the right medical team, find new doctors immediately. It is absolutely imperative that you trust your Medical Oncologist, Surgeon, and Radiology Oncologist.  There has to be more than you “like them”.  They must have impeccable credentials as well.

3)  Relationships will change.   Friends from your past or acquaintances may come forward to help you in extremely supportive ways.  Other friends and family will shower you with love and kindness.   But a very few will completely abandon you, give you no explanation or make excuses why they do.   It may or may not shock you.

4)  Emotions are just emotions, don’t be afraid of them. Your emotions will swing like crazy.  Try to let them be, notice them, and live one day at a time.  Don’t let them rule your life.

5)  The will to live takes over if you really want to live.  You must make up your mind if you do. I never really understood the will to live before my own cancer diagnosis. Deep within your soul, a strong desire to live is present once you make up your mind you want to live!  It means you are willing to fight like hell to stay alive and go through whatever you have to go through to do so.  There is no going back, and the only way out is forward.

6)  Unexpected good things happen along the way.  Many blessings will come your way in small, big and miraculous ways.  Look for them, cherish them, and be grateful for them.

7)  Hair is just hair and wigs are good.  Losing your hair, especially for a woman, is absolutely devastating.  The day my hair was cut to 1 inch short anticipating the fall out was excruciating.  Then the actual fallout is both emotionally and physically painful.  But the good news is it does get better. The day your new hair gets to 1 inch is great cause for celebration.   Suddenly, hope is born.  And in the meantime,  wigs, turbans and scarves become your new best friends.

8)  Use your energy wisely as it is a precious gift  Do not waste what precious energy you have on things that are not important to you or your family.  It is a sifting time to determine what matters most in your life.

9)  The spiritual in your life will be much more defined.  Your relationship with your God will change, grow and mature.  Although you may feel abandoned for awhile, a new and more mature relationship will take its place.  You will learn to just BE, you will learn to be thankful, and you will learn to give up control.

10)  You will never be the old you and you cannot go back.  When cancer treatment ends, you are a different person than you were when you began.  It will take some time to sort it all out.  Others might expect you to go back to who you were before diagnosis.  It is impossible.  Embrace the changes within.

The Joys and Sorrows of Writing a Breast Cancer Blog

This Blog is so meaningful to me.  I am so thankful I followed my intuition to chronicle my Breast Cancer journey.  And here is why…

The letters I get from other women going through Breast Cancer often make me cry.  I got two emails from women this week who told me they found my Blog because they were going to quit chemotherapy because it was so awful.  The letters were so similar it was shocking they came from two different women in different parts of the country.  Both of them said after reading some of my writings about Chemo, they realized that although many people had no idea of what they were going through, they knew I would understand.  And because I understood, they were going to keep going through Chemotherapy.  Now that is humbling.

It makes me feel like all of my emotions, fears, sorrows and joys are shared by others.  And what I sometimes feel are crazy feelings are also felt by others going through the same thing.  They aren’t crazy thoughts, they are normal for what we have endured.

One of my sorrows was when a previously understanding friend said to me during my 5th month of Chemotherapy that they missed “Joyful Denise” and “I needed to get out and have some fun.”   At that point it was amazing I was even dressed and walking.  Fun to me was being able to watch yet another episode of “King of Queens” at 1 am because the steroids were keeping me awake.

Those words of not being understood are extremely painful – still are.  So when I get letters from others that I felt what they are feeling, it is very healing to me that God can use my sufferings to help and heal others.

I have also gotten letters from Caregivers, Spouses, and Partners of a loved one going through Breast Cancer.  They have told me my writings help them understand what their loved one is going through and as a result, have been able to be a better caregiver.

The tears come and go with the letters I receive.  I cherish each and every one and delight in writing to all of you who have written me. Your letters always help me far more than I help you.  Invariably, they are always extremely timely.