True peace, joy and calm are not circumstantial.

"True peace, joy and calm are not circumstantial, even in the midst of chaos.  They come from the Divine.  Do not be afraid. Our needs will be met and we will not be abandoned by God."

I received this message the day I found a second Phyllodes tumor which was a metastasis of the first Phyllodes tumor. This message has served me as the cancer became aggressive within my body.  My upcoming posts will fill you in with the details on the additional metastasis.  But for now, may you be blessed, as I, with this message from the Divine.

Weigh the pros and cons of a decision and then commit.

Radiation treatment has two potential side effects, fatigue and sun burn/blistered skin. No one knows for sure why some people experience the side effects while others don't.

I checked in with my Phyllodes Tumor support group and asked the ladies for their experience. It ranged from no side effects to side effects that sound difficult:

- Extreme exhaustion regardless of how much sleep they had.

- Extreme pain to have their clothes touch their skin.

The side effects started about 3 weeks into the treatments and lasted about 3 weeks after their last treatment session.

But, isn't that life? You weigh the pros and cons of a decision and then commit. Choosing radiation treatments in spite of the side effects have kept most of the ladies with malignant Phyllodes Tumor, cancer free. The ladies who haven't had radiation treatments (typically because it wasn't offered to them) have had a recurrence of this cancer.

I was told that exercise can help combat fatigue. Most of you know, exercise has not been a strength for me...until now. I used to say, "I hate exercise". Now, I say, "I love exercise". What we say out loud or just to ourselves helps drive our actions.

I've been doing very light exercise over the past two weeks. Now that I have recovered from the surgery, I am in our little gym at our complex.

Today, I was able to do 30 minutes on the treadmill and 30 minutes on the stationary bicycle. I really do love exercise. I clicked on my Pandora App and hit "shuffle" and away I went.

Exercise is important for all of us.

No. 1: Helps us to manage our weight
No. 2: Combats health conditions and diseases
No. 3: Improves our mood
No. 4: Boosts our energy
No. 5: Our sleep is better
No. 6: Puts that zing/spark in our sex life

Ladies, regarding #6, if our mates understood this one, they would have us at the gym on a regular basis, right?

To try to minimize sun burn or blistered skin, I'm using a product called Aquafor. It was the number 1 choice by my doctor. I started using it 2 weeks ago and apply it 2 to 3 times per day.

So, I'm doing my part. I can count on God to provide me with what I need when I need it.

Change is a choice.

I took a 6 week medical leave of absence. The surgery to remove the tumor from my right breast was very invasive (partial mastectomy) and I required this time to physically heal. But, it has also provided me time to reflect.

I had always thought that when something as invasive as cancer happens to a person, that person will change. They have to, right?. Actually. . .no. 

 

No one has to do anything they don't want to. Change is a choice.

What opportunity to change was God offering to me? And then I heard it very clear, heal the past by doing what is most scary to me, allow others into my life.

I allowed people into my life and to love me. God has helped me to rewrite my script. Some of the sadness and pain are gone. I feel so much joy. 

 

When I needed a ride to my follow up surgical appointment, I called my friend Bobbe.

 

I’ve asked my sister, Linda, a number of times to go grocery shopping or make that healthy, delicious bone broth for me.

 

Lisa and Aurora made meals for us.

 

There have been others who have offered help, but I haven't needed their help yet.

 

This was a major shift as I felt I always had to do it myself.  In crisis, you need support.  You can't do it all yourself.

Something I want to emphasize is my mother, Jennifer Grainger, who is also a business adviser to women business owners with a deep-hearted passion to make a difference in the world who are struggling with their businesses said something that was very profound.  When something upsetting happens to us and we don't process the emotion, we act like the trauma didn't bother us. What actually happens is we go numb and the emotional energy stays frozen in our cells.

She went on to say that at a later time, sometimes even many decades later, something happens that triggers that "clump" of frozen energy and we are psychologically transported back in time when that thing (or multiples of the same trauma) happened and we regress to the age we were when it happened. We can act out as if we were that age. That's why we can see someone getting upset over "nothing" (from our perspective) and comment that they are acting like a 2 year old, 5 year old, or teenager, etc.

For me, prior to the cancer diagnosis, I tried to prevent old traumas from being triggered. This technique is very limiting. I avoided people and I limited new experiences.

When I was on my medical leave of absence and had time and space to reflect on my life, I realized I could embrace people and experiences and stop being afraid.

Since I have become open to healing any stuck emotions, I'm having memories of past hurts/traumas where I went numb.

To assist me with this part of my journey, I've been reading Colin Tipping's book, "Radical Forgiveness".  This means forgiving those who have hurt me, even some things that are unspeakable and maybe even unimaginable that we would forgive.

Thank you God for how you love Your children, each and every one of us. I appreciate how You use us in each others lives.

 

I am thankful for the changes I’m making and how these changes are making me whole.

An opportunity to forgive old wounding.

There isn't a lot of information on Phyllodes tumors since they are so rare.  In conjunction with your your medical personnel, you have to do your own research and determine if you agree with the course of action that is prescribed.  To the best  of your ability, be the captain of your own health care and be willing to speak up if something doesn't feel right to you.

One day, God's voice directed me to find an online support group.

That same day, I found a Phyllodes Tumor support group that has several hundred members.  The membership ranges from very young (teenage) to much older (60+) and newly diagnosed, as well as long time survivors.

Up until this point, I always felt like I was talking about someone else who had cancer.  I was in denial that it was me.   Meeting these wonderful ladies helped me to accept something that was overwhelming and scary. The group also became my advocate and helped me find a new medical team, which I'll talk about in another post.

At this point in my story what I knew was that I had a Malignant Phyllodes Tumor.  It was removed from my right breast with wide margins as a partial mastectomy.  There was evidence that indicated radiation treatment could prevent recurrence of another tumor.

In early November, my sister, Linda, took me to see the Radiology Oncologist.  I wanted to hear what he had to say before making my final decision of whether or not to commit to this treatment with peace of mind.

He felt the best approach was 33 radiation therapy sessions which meant having one session every day with the exception of weekends and holidays.  33 sessions amounted to a 6 week period of time.

The doctor said there were two main side effects

• Skin that could blister and/or be sore.
• Fatigue.  I might need to kick my up at the end of the day because I could feel tired.

My first thought after hearing these side effects was that this shouldn't be difficult.  I could reduce my work hours to a 40 hour work week and start putting on the suggested cream to prime my skin about a week before the first treatment.

I signed up for the program and began treatment in early December 2013.

As I drove to my radiation therapy appointments, I reflected on my new inner peace. . .and then I heard my inner voice say, "there's more to be done".  Hmmm, I wonder what that could be.

It wouldn't take long for me to find out.

As several of us patients sat waiting for our radiation turn, one of the other patients and I were chatting.  He asked me if I worked and I replied, "yes".  He asked, "Are you a secretary"?  I paused and said, "um no".

I noticed how I had bristled at the question.  I quickly caught myself so I didn't react in a negative way towards him.  I realized this man didn't mean to offend me.

Why might I be offended by such an innocent question?

Back in the early 80's, I had been a secretary at a number of companies: Legal Secretary, Medical Records Secretary, Real Estate Secretary, Escrow Secretary, etc.

At one of my secretarial jobs, the manager coordinated "Happy Hour" at the bar across the street.  All of us had drinks in our hands and were listening to our manager speak.  He then announced the following to the whole team:

"Cindy is going places.  She's going to have a very successful career.  Kathy (that's me) on the other hand will never be anything more than a secretary.  Then he let our a big, loud, hardy laugh.

I was mortified, hurt, embarrassed and angry.  Not only for what he said to me and in front of all of my peers, but deep down, I had believed it was true.  I pretended it didn't bother me.  I said nothing.  I was trained to respect authority.

One positive thing that came out of this was his words lit a fire under me and caused me to excel professionally.  However, the trauma of that unprocessed emotional energy has stayed frozen all of these years within my cells, until that day when I was waiting for my radiation and was asked if I was a secretary.

Coincidentally, I happen to be reading Colin Tipping's, "Radical Forgiveness".  Colin provides worksheets to follow that enable you to forgive those who have hurt you.  Later that night, I went home and filled out my worksheet, forgiving my former manager fully and completely.  I am thankful for the gift of his words to me to break my limiting belief about myself.  I released any hurt, embarrassment and anger from all of the cells in my body.

I thanked God for the people who cross our paths and give us opportunities to heal.

I realized that the journey with cancer was going to be much more than just conquering cancer.  I am being given an opportunity to heal past emotional wounding which has often times created core beliefs that have not served me.  Now, I have this opportunity to make new core positive beliefs.

From benign to malignant.

In mid October 2013, the strangest thing happened.  A lump which had been dormant for over 4 months was suddenly pressing against my skin as though it was trying to get out from inside of my breast.  It had begun to grow, and grow fast with pain.

Sometimes, it felt like someone was pouring lemon juice on an open cut.  Other times, it would throb or feel like I had a sharp knife stuck inside of me.  But, it was very intermittent.  Since I was scheduled to see my doctor within the week, I knew I would discuss this sudden update with her then.

While I waited for the days to pass until my appointment, I started reasoning in my head that everything was going to be fine. For example, I was having this painful experience and reminded myself that breast cancer doesn't hurt.  I was meditating and declaring healing on my body.  I had lost 30 pounds and maintained my weight.  I was eating healthy, organic foods.  My relationship with God is #1.  I am faithful and obedient to God.  I believed I had nothing to worry about.

When my appointment with my doctor finally arrived, she felt the mass over and over again.   She reminded me of our agreement from May of 2013.  If the lump changed in anyway, she would remove and re-biopsy the lump.

Prior to leaving her office, we scheduled October 24, 2013 as the date that I could have this painful lump removed.  Her parting words to me were, "99.9% your lump will not be breast cancer".

October 24, 2013 came quickly.  Once the surgery was complete and I was in recovery, my surgeon reported her initial findings to my family.  It was a Phyllodes Tumor that appeared benign, but as a precaution they took excess tissues as was standard practice.  The tumor would be biopsied and the results would be available in a few days.

The first three days of recovery are pretty much a blur to me.  Between the pain medication and general anesthesia, I was out of it.  By the third day, the pain medication caused me to hallucinate.  I heard noises that weren't there, "beep, beep, boop, boop".  I was aware that I was on the couch, but thought I was laying on the love seat with my husband at the same time.  Although the hallucinations weren't severe, I was afraid if I kept taking the pain meds, it could escalate.

We had people praying for me/us and I could feel it.  Many people offered their support.  Little did I know how important that support was going to be.

October 27, 2013 was day 4 of my recovery.  All was fine until that night.  At 10:00 p.m., my husband's defibrillator kicked off, shocking his heart.  It did this twice within 10 minutes,   He went into congestive heart failure.  If the defibrillator kicks off 6 times in a row, the defibrillator no longer works. 

I called our neighbors to come over to help me.  If my husband needed CPR, I was not going to be able to perform it.

Have you ever called 911?  A lot of people fill up your home with Fire Fighters and the ambulance crew.  Normally, I'm the conductor, answering all of the questions, providing all of the directions.  But this time, all I could do was lay on the couch.

They moved my husband into the ambulance and our neighbor followed them to the hospital.  Our neighbor stayed at the hospital until my husband was admitted.

I was left alone in our apartment.

I will be completely honest, angry tears poured from my eyes as I questioned God why was I left alone when I needed help.  I felt abandoned.  It was a familiar theme throughout my life starting with my biological father.  He had been my caregiver from birth until 1 year old, as my mother worked outside of the home.

One day, he became very ill and left to live with his mother.  He never returned.  As an infant, all I understood was the person I depended on was no longer there.

Throughout my life, I have chosen people I wouldn't be able to count on for help.  This is a core reason I developed the belief never depend on anyone.

My husband is the first person who helped me to break this pattern in my life.  He has always been someone I could count on.

However, when he was rushed to the hospital while I lay helpless on the couch, it triggered the old, deep wounding that no one would be there for me.

This experience was challenging my belief that God is always with us.  If that was true, where was He now?  How could He allow this to happen?

Technically, I knew I would be okay.  I could call my sister or my neighbor.  But, the  fact that I was recovering from major surgery and I was going to have to call for help, it felt so unfair.  Where was my loving God?

Since my husband was in the hospital, I called our friend Bobbe to take me to my follow up appointment with my surgeon.

My emotions were so raw.  I was completely unprepared for what happened next.

My doctor explained that the mass she removed was a Malignant Phyllodes Tumor.  This tumor is very rare and only occurs 1 in 2,000,000 people, mostly women.  They were able to remove the full tumor plus a healthy margin of tissue.

Wait...what?  Malignant?  Does that mean it is cancer?  I couldn't believe this.  My husband was fighting for his life in ICU and I'm laying on the examining table by myself.

I'm trying to absorb what the surgeon was saying and I was numb.  I am in complete shock.  I was not prepared to hear this.  This was not supposed to be cancer.

My surgeon was going to refer me to a Radiology Oncologist for my next steps.

I left the surgeon's office with feelings of numbness and disbelief.

And there it was.  I was going to have to ask for help.  The very thing I've avoided all of these years.  God was offering me a chance to heal those past experiences and form a new belief.  There are people who are not only willing, but really want to help me.  Our neighbors and Bobbe would be just some of the many who were already stepping forward.

Katharyn's Journey with a rare form of cancer.

Katharyn's Inspirational Journey is my story; as a woman who has worked in high tech companies in the San Francisco Bay Area, for more than 30 years.

My astrological sign is Scorpio which means, until recently, I have kept my thoughts and emotions private. My friends have always understood this about me.  But one morning in April, as I was preparing for work, I discovered a small cherry size lump in my right breast. Of course, later in the day I made a call to my breast surgeon, as this was not the first time that I've had lumps in my breasts.

Over the past 16 years, this has been a normal part of my life.  However, it's always better to be safe than sorry.  Having said that, I really had no worries since I expected this to be just another routine, precautionary visit with my surgeon.  I was certain it would be like all of the rest that I had over the years.  When it was biopsied and found to be benign, I was genuinely relieved.  

But then, two weeks into October, the cherry size lump began to grow, and grow fast with pain.  It was like someone squeezed lemon juice into an open wound.

Everyone's thoughts were that I had nothing to worry about because cancer in the breast doesn't hurt.  But some part of me, that small inner voice instructed me to take action.  I needed to take charge.

I met with my surgeon and explained something was really wrong.  We had already agreed that if the tumor changed, it would be removed and re-biopsied.  My surgeon reassured me that the diagnosis would be 99.99% benign.  The surgery was scheduled within days.  

Once the surgery was complete and I was in recovery, my surgeon reported her findings to the family that it was a Phyllodes Tumor, it looked benign, but as a precaution, they took excess tissue as was standard practice and would biopsy it.  

Four days later, I went alone to my post op meeting with my surgeon, (under circumstances that I'll explain later).  It was then my surgeon explained that the Phyllodes Tumor was not benign, but actually malignant.  It's a very rare tumor.  Only 500 cases or 1 in 2 million people in the US receive this diagnosis every year.

To say I was caught off guard would be an understatement.  I didn't understand how I went from 99.99% benign to malignant.  I had to ask her if malignant meant cancer?  She said, "Yes".

This was the day that I decided to go against my Scorpio tendencies and live out loud.  As this day was the real beginning of my journey, one that would have lots of ups and downs creating deep changes within my soul.

Through the encouragement of others, I'm turning my story into a blog with a goal of inspiring and helping as many people as I can through my experiences.