Breast Cancer Awareness Month - My Story

1. WHEN: CANCER: The word no one thinks they will hear on a routine exam. It hit home Spring of 2020 when I was diagnosed with breast cancer at age 59.

2. STAGE: My final diagnosis was Stage 1, Grade 3 invasive breast cancer.

3. INITIAL DETECTION: Two masses were discovered during my routine mammogram. Initial diagnosis was further confirmed with a biopsy but surgery was not performed until summer due to COVID situation. "Elective surgeries" were put on hold that spring.

4. FEELINGS: I got the phone call late on a Friday afternoon. The doctor was kind and presented me with the facts. I felt like my life turned completely upside down that evening. My emotions raged. First disbelief, then tears and fear, followed by anger, and then determination that I would face it head on. My husband and best friend remained calm as always, held me tight, and said "we will get through this." He is my rock and I began to feel strength. I thought of my daughters and grandsons and got down on my knees and prayed to God that there would be lots of future memories made with all of them. I was up one minute and down the next but I knew I had to pick myself up and just do whatever I possibly could to get the cancer out of me and put the whole ordeal in my rear view mirror.

5. FAMILY HISTORY: An aunt had a bout of breast cancer and survived. My mother and I both had cysts but no other family issues. My father was a heavy smoker and died in his 60s of cancer which made my diagnosis hard. You hear the word "cancer" and your mind wanders all over the place. I know so many people who have survived cancer but also so many who went down fighting with everything they had. Diagnosis and treatment have made such gains over the years (and let me tell you if you research the disease it has been around a long, long time), I quickly focused on doing whatever I could to conquer the disease.

6. SUPPORT SYSTEMS: I have a very strong support system. This all occurred during COVID so times were strange. My husband of 40 years was my rock and best friend through the whole process. My daughters are amazing young women and handled the news with such strength and support of me although I know it hit them hard too. My son in laws were there for all of us and my grandsons can always lighten up a dark day! Both my side of the family and my husband's were always there from afar via phone, texts, and cards. I have solid friends both from childhood and adulthood who supported me more than they will ever know with texts, cards, calls, visits, and lots of goodies! My faith deepened and I prayed for strength and health. I was scared but never felt alone. I can't thank my support system enough for being there for me. This was instrumental in balancing my negative and fearful side with a positive and fighting approach. Thanks to all!

7. TREATMENT: Frankly it was all overwhelming at times. There were so many things to consider and learn. Having a strong medical team to organize and present options was so helpful. My surgery was put on hold due to COVID. My medical team was as challenged as me during those days and I know they did everything they could within the state and local restrictions. My Oncologist prescribed a daily Aromatase Inhibitor pill which hopefully would help my body fight off further cancer and possibly help shrink the masses while I awaited my procedure. I was blessed to have the cancer team but most importantly my faith and my family who love me and support me in my decisions. Their love and my love for each and every one of them truly was my source of strength and determination.

I recall vividly when the state restrictions were lifted and elective surgeries were given the go ahead. The hospital called me bright and early that very first day. An MRI was scheduled to help determine the extent of disease and location to help with the surgical decision although I was already pretty sure what I was going to have done. Due to COVID I had a long time to ponder on this! The masses had not grown and actually measured a bit smaller which may be due to the more accurate picture from the MRI or the medication. The surgeon felt a mastectomy was indicated due to the location and multiple areas invaded. I was in total agreement. She was wonderful at explaining my options. I was pretty set on my plan and did not opt for reconstructive surgery. I believe that is a very personal decision which each individual makes for themselves and I can understand both sides.

I had a mastectomy one summer morning and was home later that afternoon. I began the healing journey while waiting on my final pathology reports. I was a bit overzealous my first few days and kind of set myself back a bit on days 3-5. I felt such a strong fighting response. My husband and my family helped me physically and emotionally with my drain tube, chest binder, and roller coaster feelings. My surgeon's nurse was wonderful and answered lots of questions over the phone. I had worked as an OT for many years and the skills I learned and used with patients came in very handy. I was diligent with my exercises as I had seen the detrimental effects of women years ago who had surgery and then didn't elevate or move their arm and ended up with chronic swelling and range of motion deficits. It wasn't fun and I have a lovely scar, but I have full range, strength, and use of my arm which to me are the important things. I kept thinking of so many people in our world who face much bigger challenges like our vets who have lost arms, legs, vision, etc. and they fight through and adapt. My problem seemed immense some days and less so the next in comparison to what many people endure. I hope my daughters and others will always hold true to the words that it's not what's on the outside but rather the inside that really counts in life. Our society spends far too much time focusing on physical attributes rather than respect of self and others, kindness, humility, a strong work ethic, and treating everyone as they would like to be treated. I lost a physical part of myself but I feel I gained positive new perspectives on life.

I won't delve deeply into all the medical tests, findings, and final pathology reports in this blog. I learned a lot and am glad to share my story with anyone privately in more detail if they are facing similar challenges. To make a long treatment story short I was given good news the week after my surgery. My surgeon was able to remove all of the cancer and my sentinel lymph node tested negative for metastatic disease, whew! My score on the Oncotype Breast Recurrence scale was also low so hormonal therapy was recommended over chemotherapy. I was advised to continue on the Aromatase Inhibitor pill daily and will do so for at least 5 years. This does have some side effects including increased risk of Osteoporosis among other manageable symptoms. My diet and exercise can help with side effects as well as recurrence risk. So in a nutshell, I am a survivor.

8. PROGRAMS & SERVICES: I have a team at the Breast Cancer Institute that follows me and a Nurse Navigator I can call to guide me with questions. An OT eval was offered to help with scar management. I was given a referral for a prosthetic/form and bras which are covered by many insurances. Athleta, Lands End and other places have started mastectomy lines which I hope other companies begin to address in the future. The hospital offered yoga and survivor groups but due to COVID that was all on temporary hold. I knew people who had been through cancer and talked with them as well as educated myself with lots of reading. I do advise others to be cautious with internet information as it is overwhelming and often the stories and articles that pop up are negative ones. There is so much good information out there to help you understand this disease and treatment. My advice is to ask your doctor for sources. I did refer to The American Cancer Society at cancer.org and The Susan G Koman Breast Cancer Foundation at komen.org. Both of them serve as good resources. The hospital also gave me a wonderful book filled with all kinds of useful information and resources which I found very helpful.

9. OBSTACLES: Of course the diagnosis itself was a huge roadblock in my life. Three obstacles or stressors that made things more difficult stand out.

First, Covid. It was already a stressful time in everyone's life with so many unknowns. The hospitals were holding on elective surgeries for other diagnoses/treatments including mine for quite some time. Although I do think in ways COVID took my mind off of cancer to some extent as so many people were being affected in so many ways by this awful new virus.

Secondly, stress over my ability to spend time with my family and my dear mother. She usually spends a portion of the year with us as she is nearing the century mark in age! Amazing woman and still very independent. Due to the COVID restrictions plus my situation things were all up in the air. I did not tell her about my diagnosis early on while I was waiting on surgery. It just was a difficult time for all and I felt so helpless as I knew she was lonely and worried about the whole COVID situation. I also was unable to spend much time with my daughters and grandsons as I had to stay healthy and ready for surgery and the required negative COVID test prior to it. The waiting was difficult.

Lastly, I had an abnormal pelvic sonogram waiting in the wings to be addressed after my mastectomy. Again, I had a great team at the Cancer Center, and the Gynecologist that performed a minor surgery on me in the late Summer of 2020 to address this third worry was amazing. Good news again with a negative pathology report. 2020 was quite the year!

10. ADVICE: First, Get your recommended preventative tests and regular check ups done. My cancer was caught on my yearly mammogram and self checks. I have also had polyps removed during an initial colonoscopy a few years back. The pathology report was negative and I had no recurrence at my next colonoscopy. These tests really aren't painful so get them on the calendar and just go! The bill of good health from a negative test gives you peace of mind or if something is found and caught early it can be treated in many cases. I can't stress this piece of advice enough.

Second, make gradual and small changes in lifestyle to improve your health and well being. We often have so many things going on that we don't take time for this.

* Exercise daily and mix it up. Even 5-10 minutes is better than none. Walking is so simple and has so many benefits. Like I said weight bearing and strengthening is important for me due to my medication so I try to fit that in my schedule. There are so many options both with exercise and diet! Just take baby steps and add some changes before you really need to! I can pretty much guarantee you will feel better.

* Improve your diet and drink lots of water. In my readings, I have found so much research on diet associated with diseases. Certain foods tend to fight off disease and others over time can lead right to it. I have made changes that I now am so used to I could never go back. Many won't like this one but limit alcohol and sugar as neither are of benefit. I am not saying don't indulge yourself in your glass of wine or dessert but limit them and find alternatives. I have my downer days where I stress eat and indulge in a batch of cookies :) but I am finding a handful of nuts, a Clio yogurt bar or a small piece of dark chocolate can satisfy me if I put my mind to it. My mother always said "do everything in moderation." Mom was right...again :)

Third, learn to say no, to do what brings you happiness, and to balance your life. Go after your goals and dreams but don't let yourself stress too much in the process. Do simple acts of kindness and service. Make time for people, hobbies and self care in your week. Put your phone down a bit more and slow your pace. Focus on the positives in life and live for today!

Lastly, Do things your way. We all have different ways of dealing with things and what is right for one may not be right for another. I never felt the need to go skydiving when I got my diagnosis as the Tim McGraw song goes but the next person might. I personally wanted more time for faith, family, and friends which I luckily have been given. I take in the sunsets, the beauty of leaves changing in the fall, time with my family and friends, and watching my beautiful grandchildren grow and experience life... and as the old song goes "I think to myself...what a wonderful world."