My First Dance with Cancer

Hearing the “C” Word

In the summer before my diagnosis, I was on an amazing trip with my mom and daughter to New York City. It was an incredible time, three generations of loving women all walking the streets of Manhattan. Now when I look at the pictures, I want to scream at the middle aged woman … “Hey Janet! You remember the slip of paper your doctor gave you for your mammogram a couple of months ago? Yeah, the one that is sitting at the bottom of your purse with makeup stains on it? Well, WAKE UP!”

“Mrs. Knode, we need to do a sonogram to get a better look at something from your mammogram, you see, it is THIS right here.” The nurse is holding up an x-ray and pointing to a starburst image on my left breast. Well, crap. I have had follow up sonograms before, but no one had ever shown me an image of a spot on my breast during a mammogram. This was new. The sonogram soon led to a same day biopsy procedure and the long wait began.

In my attempt to process the fear of the unknown, I made a list of the steps I would take if it was cancer attempting to frame this threat in an acceptable way in my mind. (It somehow seemed like I was keeping control over my life if I took a physical action like writing on paper). Yes, your brain runs as fast it can to process anxiety in any way possible. It was heartbreaking to later learn my daughter, Amanda, had discovered this piece of paper and went to her bedroom, shut the door and cried. She bravely came to me when she had collected herself and wanted to know what was going on. Bless her. I tried to tell her things would be okay, but I was still trying to convince myself of it. It bothers me to this day that she found that paper and struggled alone to make sense out of the confusion. I am sorry, Amanda.

It would be two LONG days before I heard my doctor say, ”It is malignant”. I was numb. Amanda was standing next to me and I tried to stay calm, but she could tell what was happening. My husband had a good friend whose wife was an accomplished breast surgeon so we called her immediately. She asked for a word for word replay of my doctor’s conversation and if the word “invasive” was ever mentioned, it had been. She wanted to see me as soon as possible and I felt a dark cloud start to lift. I didn't know what was going to happen, but I knew I had someone in my corner and that made all the difference.

We waited to tell our son, Christopher, until he was past his finals and home for Christmas break. The fact that all of us sat together as a family to tell him helped ease any fear. We shared that my surgery was scheduled for December 28th. (We would find out later that my tumor was stage 2, invasive ductal carcinoma, 2.5cm in size and estrogen receptor positive). What would follow was a series of doctor’s appointments discussing the options. There is much to consider in a moment like this. My husband showed up at every appointment with pen and paper to capture all the details. This was crucial because I would remember things in a way that I could handle and it wasn’t always what was actually said. Throughout it all, though, I felt God’s caring warmth wrapped around me. I cried daily and asked for guidance and strength on this journey. 

Making the BREAST Decision Possible

Everyone’s choice for treatment is theirs to make. I wanted a lumpectomy even though sometimes a clear margin around the tumor is not always successful and may have to be repeated. During the surgery, a lymph node dissection (retrieve strategic lymph nodes to test them for cancer) was also completed to see if my little starburst had traveled beyond my breast. It had, but only by an incredibly small margin in two to three lymph nodes.   Did my surgery result in getting a clear margin around my tumor? No, it did not. Not at that surgery or the second one that followed. It would take 3 surgeries to get a clear margin. My doctor was so happy for my success, she sent me flowers.

I trusted that no matter what happened to me, I was not alone. I was being held up by multitudes of prayers by many family and friends. I knew the Holy Spirit was within me and all of this gave me great comfort. I would have a myriad of tests throughout the assessment process. One scan was for my bones to make sure they were clear of any fragments of this disease. I was getting very used to traveling into the big donut hole scanners, my definition, and by now I had lost all my modesty. It seemed EVERYONE needed to see my breasts. On the day of my bone scan, a very nice gentleman escorted me into a room and then said he would be right back. I knew the drill, take off my clothes and put a robe on and wait for further instruction. Well, wasn't he surprised when he returned and caught me still in the undressing phase!! Evidently, you DON’T need to undress to do this particular test. His eyes were the size of golf balls and he was so relieved when I busted out laughing.   We both knew we had shared a rare moment of awkwardness and there was nothing left to do, but laugh.

I look back at this incredibly challenging journey through new lenses. Yes, I will always remember the buckets of fearful tears and how I continually prayed for victory and healing. Many of you have prayed these same prayers. I still pray daily for strong health and I still have to kick fear to the curb at times. I can now, though, see uplifting moments of humor that transpired throughout my journey. The dark fog that walks with you on this path kept me from seeing some of these lighthearted moments at the time. I share the lighthearted moments as they are an important part of my story. Research shows humor is a restorative part of the human experience and it serves to relieve the heaviness and darkness that often comes to set up camp within your mind.

I am grateful for mammograms that open the door for you to take action if you have an unwelcomed threat. (DO THEM). I felt hope in a new way after my surgeries because I was now moving on to the next step. I was more than happy to live my life with one breast dancing to its own beat. FINE with me! A chemo port was also implanted in my chest. It was about the size of three stacked quarters and it constantly reminded me that I was in a state of transition. What a month I had. Three surgeries in four weeks. I thought surely my surgery days were finally over. (Hint… that would be a NO).

Chemotherapy was next. Yes, you DO actually think of your hair before you start to think about what is involved in the treatment.

Losing My Hair

Let’s talk about the hair, chemo’s gift. My hairstylist, Rod, was very familiar with what needed to happen. A week before my first chemo, he gave me a short new layered hairstyle. (This was a big deal. I had been wearing my hair the same way for decades. Mostly all one length just above my shoulders. Very boring). Well, I actually loved the new layered short cut! It was something he tried for years to get me to do and I ALWAYS turned him down. 

When Rod cut my hair that day he told me, “Janet, wear this new style for awhile because I want you to see that you don’t have to wait until all of your hair grows back for you to be YOU again.” 

Day 14 of chemo finally came and, like clockwork, I sat on my bed and started to pull on my hair …. yep, I am now holding it in my hands. I already had an appointment with Rod for my “day 14” transformation and I needed his help. I decided to have him shave my head before chemo could take it. He asked I wear my best earrings, full makeup, bring my camera and he promised me I would not cry. I arrived that day to find a comedy playing on a TV that had somehow replaced the mirror I usually sat in front of. He said, “let’s have some fun first and send pictures to your family because you know they are worried about you”.  Well, evidently, getting an unexpected mohawk raises your personality a bit….

After playing around with my hair and laughing at how I looked, he then asked if I was ready. “Go for it”, was my reply. Instead of shaving my head bald, though, he gave me a buzz cut. I asked him why he decided to leave a bit of fuzz on top and he explained that sometimes chemo doesn’t take it all. He wisely said I might find comfort in occasionally rubbing my head and still finding a part of me hanging in there. As I looked at myself that day, I realized I was really still there. The reflection showed me a fighter. No tears. My life was more important than my hair.

Chemo …

Getting chemotherapy was the most foreign thing to wrap my mind around.  I was harming my body to help it. When I arrived that first day, I was given a comfortable chair with a pillow and warm blanket.  A television remote was by my side and I was asked if I was comfortable and wanted anything to drink.  I could very well be describing a fancy international flight, but my destination this day was a life without cancer.   

I stared at the IV bag knowing what it was about to give me. I was asked to keep my fingertips in ice water and ice chips in my mouth to minimize harmful side effects.  This was actually the worst part of the treatment. With my husband by my side, I would sit in that chair every three weeks for a total of six treatments.  We would return the next day for an injection to guard against complications. I would then spend the first week resting in bed.  My angel friends would arrive on my porch every night with a warm meal. God bless them. 

Luckily, I never felt sick to my stomach after the treatments. I just felt very old.  I had no appetite because I developed a metallic taste in my mouth so nothing really satisfied me (and I LOVE Food).  I counted down the treatments one by one.  After my third treatment, my friends gave me a wonderful “half way there” luncheon celebration and gifted me with beautiful scarves.  I was so grateful for their support at such a hard time. LET PEOPLE IN.

Chemotherapy is serious medicine.  Timing of the drugs is everything.  In the old days, they would sit with stopwatches and monitor the rate at which the drugs were given.  The human body can only handle so much trauma.  There were three different bags hanging on my companion pole and each bag averaged 60 minutes to process through my body.  Some of you know this process very intimately, huh? One of these bags held Cytoxan, affectionately called the red devil, and it was my least favorite.  On my very last chemo session, my husband noticed that this bag was emptying way too fast. He had watched these bags for months and knew their rhythms. Something was very wrong. It entered my body in 30 minutes.  The label had been incorrectly marked and I received it in half the time.  Seriously?!  The doctor was notified, and for a few moments, I sat there overwhelmed.  The collective opinion was that my body had months to get accustomed to the drug and since it happened on my last treatment, everything should be ok.  My husband was told to keep an eye on me for a few days and report any concerns. There was no time to worry over something I could not change, so I let it go. Ringing the celebration bell that day in the hospital to signal my last chemo was a victory. My mom even drove in from out of state to join me in the celebration and I was thankful to close that chapter with her along side me. Thank you, God, and goodbye IV Pole!

More Than One Shaved Head

Losing your hair and not seeing the image in the mirror of the person you have always been is unsettling. The outside world starts to discover there is something different about the way you look. Wigs are a band aid, but still a good one. Sometimes we almost think we are fooling those around us.  Of course, I gave myself away in a gym one day when I took off my sweatshirt and my wig came off with it too. I have never moved so fast in trying to get that wig back on. You know in the rodeo when the cowboy is calf roping and jumps off the horse and in seconds he has the calf tied? I think I missed my calling. You should have seen me trying to find my wig in the neck of a sweatshirt, pull it out through the opening, figure out which side is the front and then pull it back on to the shock of those around me. I felt like throwing my arms up in the air to signal DONE!

The biggest day I had been anticipating was the day I shaved my head. It seems trivial in the scheme of what was happening, but it was a big day for me. Some women will stand in front of a mirror in defiance and go for it themselves or even make a party out of saying goodbye to their hair. I admire these amazing women tremendously. I am not cut from that cloth. I needed help from an experienced hand and I am ok with that. I had told my husband that I wanted to go alone for this milestone and he understood. Afterwards, when I walked back in the door, he teared up and was so relieved to know this step was over and I was actually smiling.

My wig was next. I had an appointment later that same day to select a style and have a hairstylist trim it to better fit the look I wanted. As the stylist started to trim the wig I was wearing, he took a phone call and proceeded to work on my transformation while holding the phone against his shoulder. I went from feeling I was being handled with care and understanding for the fight I was in, to simply being another number. As he continued to customize my wig with little regard for me, an unexpected wave of emotions crashed over me and I finally started crying and told him to stop. I was done. I told him this was too much for me. I had endured shaving my head earlier that day without a tear and now because of a silly wig trim, I was past my breaking point. All I wanted was to go crawl in my bed and cry. 

So where is the other shaved head in this story? My sweet Mom. She drove in from out of town one day and was standing at my front door with the cutest new hairdo. She had lightened her hair to blonde and had a sassy look about her. I complimented her on her new look and she smiled and lifted it right off her head and handed it to me. All I could do was stand there looking at her bald head and I kept asking “WHY?!”, “Why would you DO that?!” 

It wasn't dawning on me yet as to why she did it. She smiled and eventually said, “Janet, I can’t take this journey away from you, but I can walk it with you.” I knew in that moment how hard it had been to watch her daughter suffer. My mom had a very good friend whose daughter had died from breast cancer. It must have all hit too close to home.  I thought of my mom’s friend the day I picked up the phone to tell my mom I had cancer too.   I kept saying, “I have something to tell you and I want you to know I am ok with it. I am good.” Of course, I wasn’t good with it, but I had to help her handle the information.  As a worrier myself, the fruit doesn’t fall far from the tree.  She was comforted to hear we had caught it early. She would later tell me she fell apart after we hung up, but there she was standing in front of me with a bald head and a big smile. We hugged and I was touched by her unbelievable gesture. I finally got it.

Radiation and Restoration

It takes longer to park the car and walk in to have the radiation than the entire treatment itself.  It sounds simple, but it is a very serious treatment.  I had a session every day for six weeks.  In order to make sure that the radiation only goes where they want it to go, they mark you with tattoos.  Every scan is precisely lined up and technically guided. These markers were my first tattoos ever, little dots that look like sharpie marks. Not exactly “bad to the bone” but these five little dots still remind me of the battle and the will to survive. 

As I laid on the radiation table with this huge machine maneuvering above me, I kept thinking that I really should be strapped down somehow so my “bad to the bone” markers always stayed lined up. They had given me a customized mold to lay on that hugged my shoulders and back, but they did not strap me down. I couldn't help but think about what if I sneezed? A wave of an arm, hiccups or a twitch of a shoulder would have been a pretty big deal.

Redness and burning are common with radiation. To keep things comfortable and to help reduce irritation, my mom brought me an Aloe Vera plant. Thanks mom! Every day I would cut a small section of a stem and bring it with me. After each session I would gently rub the gel on my radiated skin, apply powder and then put on a soft cotton t-shirt to wear home. I never burned! I did have a breast that was much darker than the other one for awhile. I remember thinking that it looked like I had wandered onto a nude beach somewhere and didn’t get my bra all the way off.

I could handle the radiation trips fairly well because I knew they were the last part of my treatment. I was ready to move past this place in my life and look forward. My taste buds even started returning. I remember going to the grocery store one day and being hit by a craving for peaches. I just KNEW I could taste them that day. As soon as I got back in my car, I ripped open the bag and bit right into one. I sat there in the parking lot of my local grocery store and cried. It tasted amazing!

As radiation was coming to a close, I was sprouting new hair.  It was late summer at that time, but it felt like spring!  I was so happy!  My eyebrows were even attempting a comeback (I had counted them during my battle - six to seven hairs per eyebrow during chemo). My eyelashes were slower to return, but eventually they rallied. They grew back shorter, but at least they were there. Isn’t it amazing how our bodies, if given a chance, know the path back to a healed state? I am reminded of the mystery of trees that know to let go of their leaves in winter, but then know to sprout new buds for restoration when warmth returns. The rhythms of this universe are amazing.

Learning to Bud Again

The day arrives where you wake up and all of the treatment is complete. You are told there is no evidence of cancer left in your body. You are in remission. You have fought against this enemy and won. Praise God! This day does not arrive for everyone and it is heartbreaking when the outcome is different because everyone fights hard and deserves this day. There will always be questions that we will never know the answers to.   I prayed daily and I trusted that God had me and that this journey would serve His glory and this path was a second chance to share my gifts and serve my purpose.

I know that my faith can never operate beyond my knowledge of God’s word so I feed on His word and it tells me that by Jesus’ stripes I am healed. (I met with a woman recently who was battling cancer and she told me one of those stripes had her name on it. I love that). I am grateful to all my doctors, the medications and to God for providing strength and mercy on my journey. I know He has a plan. I was renewed for a reason and I prayed I would have the discernment to walk in my purpose. 

Every sunrise holds another chance at grace and it washes over me in new ways to this day. I have struggled with depression most of my life and my way of living had always been focused outward on others and not owning who I was or allowing space to honor my feelings (think codependent here).  The coping skills you develop as a child rarely serve you well in adulthood. A therapist once told me that battling cancer was probably the first time I had really focused on every feeling, thought, dream, hope that emanated from inside me alone. I fought hard for myself and it opened my eyes to a new awareness of myself. While I walk today in faith and trust, I admit that sometimes I still have moments where fear of the unknown creeps back in and I struggle to keep my head above water. I pray for God’s grace on those days. 

Remission is a tricky thing to navigate. It is like learning to get back on life’s highway and walk your journey when you have already experienced being hit by a car. You try to feel safe as you walk along the shoulder trying to live a normal life heading in the direction you once traveled. You hear the cars going by and you struggle to fight feeling vulnerable. Everyone else seems to be safely on the other side of the guardrail, oblivious to this danger, having never been run over. Everyone is traveling down the road together and they are happy for you that you are there, but you are the one praying for every car to stay in its lane. This may sound like a strange analogy to you, but it makes perfect sense to me.

It would be two years before one of those cars wandered out of its lane and headed right at me again. I would have to battle for my survival a second time, but this time it felt more empowering because I was ready to fight in a bigger way. I was ready to say goodbye to my breasts.