My advice

Somebody asked me the other day: what has been the hardest to handle in your cancer journey? I have taken a bit to think on that question. Every time I bring it up to me, I come up with the same answer. Hardest has been not knowing what comes next or what to expect.

That may be a vague response. However, thinking over my year, there were few times when anyone initiated a straight conversation about what I could experience. In that void, I was the most fearful. I felt unprepared. Talk about anxiety. Egads! I needed to reach out to someone and talk things through. 

Initially, last September, no one said anything about my mammogram except they wanted me to get a sonogram. At the sonogram, they wanted me to get a core biopsy of my breast. Okay. Why? I was getting pretty up tight. When I was diagnosed two weeks later with cancer over the phone, I asked what was next and the response was simply that I would be getting phone calls for more appointments. I panicked and was so alone in that moment.

I hung up the phone and told my husband. I had cancer. For an entire month we were outright scared and I imagined the worst. What stage was my cancer? Was it only in my breast or was it in other places? Could I die? Did I need to get my affairs in order? What do I tell my kids?

There were phone calls from clinics to schedule appointments for a breast MRI, a lymph node biopsy, a PET scan and more. What were the purposes of these tests? Not knowing made me more and more apprehensive. When I asked questions at each test, the technicians would smile and say, "We really cannot discuss anything with you." So, I just kept showing up, hoping someone knew what was going on. Meanwhile, nobody asked me to look at my insurance to see what it covered.

It was an entire month before I met with my surgeon and then oncologist who explained I had Stage 2 aggressive breast cancer. Genetic testing happened which showed I did not have the familial gene even though my mother and grandmother had breast cancer. I guessed that was good news for me and my children.

I had an echocardiogram on October 23rd, apparently to get a baseline picture of my heart. Then, there was the installation of my port on October 25th. There was no explanation about what to expect in either situation. Thankfully, a dear friend went with me to the port appointment. She was a nurse and helped me feel more grounded with what was going into my body. Sigh!

Then the waiting game again. I stewed in my anxiety. I was never more afraid. Three weeks later I had my first chemotherapy appointment. Gosh! It was Greek to me. 

The nurses walked me through the chemo clinic routines but I had no clue about what to expect, not really. The first day I was at the cancer clinic from 9-6:30 p.m. while 12 bags of chemo drugs, steroids, anti nausea meds, and Benadryl filled my body.  I continued weekly infusions between November and March. I was affected in ways I hope never to know again. I so wish someone would have told me that my body would not feel like my own.

About then I learned my insurance was not covering chemotherapy and the copay on all the previous tests was huge. Bills started arriving for sums of money way out of our reach. My husband and I changed our insurance December 1st but faced all the bills from September to the end of November. Egads again!

There was surgery - a lumpectomy - in April. I felt unprepared and floated through that day wondering what would come next. The pain in my pre-op preparation was overwhelming. I went from surgery to a variety of recovery rooms. Thankfully the good Lord was there to hold my hand. 

Daily radiation happened during the month of July. Folks said I might feel fatigued, and I knew I could handle that after managing chemo fatigue. No one told me I would feel nauseated or be vomiting that entire month. It was like having morning sickness when I was pregnant.  The radiation doctors and technicians told me the nausea was all in my head!

Today I face two final infusions - one on Columbus day and the final one on Halloween - and then I am done with treatment. Halloween for ringing the final bell is very appropriate what with this being the scariest year of my life. Still, I wonder, what comes next? When will the drugs be gone from my system so I feel more like me again? What about follow up appointments? Will I worry about cancer returning? 

In retrospect, the best answer to my initial question - what was hardest during your cancer journey - is accepting that the professionals could not totally prepare me for what was coming. They do not know because every individual has a different experience during chemo. Our cancers are different. The side effects and drugs are not the same. The tests affect us differently. Even surgery and radiation was my own personal experience and it could not be predicted. 

My advice to others on this road (and I do not easily dish out advice) is the following: First, surround yourself with understanding family/friends who will not try to rescue you but will be your cheerleaders clear to the end. And find others 'out there' who have maneuvered through cancer because they will listen when you need to vent. They are willing to share their tips and tricks. They have been there and done that.

Second, lean on your faith. I strengthened my relationship with God this year, discovering a strength, courage and peace I never knew previously. More times than I care to mention I handed my troubles to God. My personal pain was easier to handle. When the day began, we did devotions together. When I could not sleep in the night, we talked. When I was scared shitless, I begged that He would calm my fears. Today we tackle each day together and I am strong.

Third, when you are diagnosed, right away, get in touch with your insurance people to make certain you have the coverage you need. In addition, talk with the cancer clinic and apply for 'scholarships' that will help you tackle the financial end of things. There is help available for cancer patients. Find it so you do not have heavy money burdens adding to your stress.

Finally, accept that you have cancer and then fight it with all you have. Keep positive. Share your situation openly with others. Welcome their support so you are not alone. Be grateful for all that modern medicine has to offer you. And let God be God. He is my guide, connecting me with friends - many fellow cancer patients - and bolstering me when I need Him most, hugging me when I want to feel that everything will somehow be okay. I actually have viewed chemo as God's love filling my body to overwhelm the evil cancer, and today my cancer is gone. I am so blessed.

My special boys

So Covid is behind me once again and more normal living has resumed. My husband and I have been RV camping three or four days a week out at Skyline near Attica. What with Labor Day complete, the summer is winding down. Because July meant daily trips to radiation, I lost July and feel the summer has been short. I can't help it. Where did the summer go? 

Sunday we had a chance to get together for a picnic with my three boys and three of my grandsons. My youngest has built a cabin on his Java Center property so we enjoyed his place thoroughly, marveling at what a beautiful job he has done with landscaping in the woods. 

When he talks, I see in his face a love for the country as he describes everything he has done to create this respite. His connection with the natural world is intense, something I easily identify because that was me once upon a time. There is nothing quite like bonding with the land. You feel part of it. You feel drawn to the drama behind the elements as you admire the wildlife and honor their very existence.

My oldest and middle boys are superintendents of golf courses. They are swallowed up most summers with the demands put upon them by golfers, the weather, tournaments, and business within the golfing industry. It was wonderful they could get away for our Sunday family time, bringing their tales from life on a golf course to entertain. They make me laugh.

Talk about tales. As a family, we often share stories and hysterics regarding our life over 34 years of my running a summer equestrian camp. The boys get going about their summer antics and before I know it, they are sharing their behind the scenes shenanigans with campers - often silly stuff - that I never knew about. If I live long enough, maybe I will get it all. Hmmm. Not sure about that. I'm thinking most mothers never really hear all the stories their kids could tell about their growing up years. 

Driving back to Skyline from our picnic, I was quiet. My husband wondered what I was thinking and I had to confess my cherished love for the beauty of the Java Center countryside that I lived in and loved for all those 34 years.  And then, talk about cherishing, I reviewed afternoon conversations with the boys and my grandsons that were special to me. Sweet.

I have discovered I am not good with words when it comes to saying thank you to my boys.  I try. When I say thank you for how they kept me going this last year, it doesn't feel like 'thank you' is enough. Their frequent phone calls, cards, flowers and occasional visits were priceless. 

On days when I was low or feeling utterly lousy, a call from one them would lift me up, reminding me that God was in the process and keeping us connected. I felt so loved. I was not alone. Their timing was always perfect. Their thoughtfulness was genuine. If ever they read these words, may they understand my deep gratitude that they are my sons and we are family. I am so blessed. 

Signed as a loving mom, the quilting cancer girl