The healing process

Sometimes folks say that you never come back after having chemo, radiation and the surgery that often goes with cancer treatments. I beg to disagree. I will add that it takes a long time. We have to rebuild our immune system, get our core strength back, and figure out how to find the stamina we once had. It is work. So for anyone who has 'rung their bell' at the oncology clinic, be prepared: coming back is definitely work. We become our own 'ROCKY' star, pushing hard till hopefully, we succeed and shine our light on greatness once again.

When I asked the nurses at the clinic what I had to do to rebuild my immune system, they laughed and said, "Work at a day care center!" I laughed and suddenly realized that I might be sick off and on with new germs that are out there, just so I could build my resistance. They also said, "Lots of Vitamin D."

I am taking my daily Vitamin D. Off and on, I get the bugs that are going around. Have had Covid twice or three times, a nasty bronchitis that lasted for months, and gastrointestinal things that are just yucky. But it is March now. I am five months away from 'the bell' and gradually my system is rebounding. Phew! Those nurses did tell me it could take a year or two.

Then there was the neuropathy I had in my fingers and toes. Lost many of my toenails and now they have almost replenished themselves. My finger nails still are strange, but the dark brown color is gone. There is pink under the nails. Ongoing problem is the fragility of my nails. They must be short at all times because they crack and shred and then catch on the fabrics I work with everyday in my quilting. 

My core strength was shot because I sat so much last year. That meant I started walking bent over like a little old lady, my hamstrings tightened up, I was getting horrible cramps in my legs and feet and hands, and moving around literally took my breath away. I had all I could do to climb a flight of stairs. 

What I have done is walk daily with my dog when the weather is good. I also work with a good chiropractor to get things lined up again, and now I am taking a weekly Pilates class. That class is amazing. I am standing up straighter, working on balance, and my hamstrings are lengthening so the cramps are disappearing. Also, the stretching exercises we do helps me address the scar tissue from my surgery. Hallelujah to that!!! Now I look forward to riding my bike again once the snow is gone. Woot! 

(Insert note here. A teaspoon of mustard will relieve your cramps almost immediately. Also tart cherry juice works well, especially before bedtime. I do not know how I would have survived the pain of cramping without those helps.)

Stamina is an issue still. Some days, some weeks, I am almost back to my old normal. Problem is on my good days, I push to get lots of things done, or I teach too many classes and then I am drained for two or three days. It's like I pay a price for feeling good. When I am drained, I have days that feel like one of those better chemo days, or my stomach is off like with radiation. I need to rest more. I have to watch my balance. Often I do not drive on those days because my judgement is clouded. I become like a frog climbing a muddy spring hill.  There is progress...then I slide backwards.

I am looking more and more normal. My hair is back albeit different hair so far than I had pre-cancer. It is baby fine and curly. Imagine me with wavy almost curly hair that does its own thing. Pretty funny. And my hair is about the color of my little yorkie terrier. There's red, white, brown, and grey all mixed together. I tell friends that I am trying to match my little dog. I am thankful for my hair everyday; so is my beautician. She has fun trying to make me look presentable. 

A few weeks ago I had my first mammogram. Boy! Was I uptight about that. Yup. When the nurse came out and said the pictures were normal, I cried. I'll be honest, I never realized how wonderful it is to hear the word normal after a year or more with cancer. The nurse was so supportive. She hugged me and we cried together.

What is hardest is getting all the people around me to understand my healing struggle. Because I move better and look normal, laughing, teaching, exercising, cooking, cleaning, running errands and more, they believe I am functioning as I did before my diagnosis. Not. It is different. 

My current reality is a lonely place to be in. Some people 'out there' think I am faking my tired, or my balance issues, or thinking cloudiness. They want me to be like them with lots of energy, vim, vigor, enthusiasm and conquer the world attitude. I can give all that but not consistently. I pay a price.

I know when I teach classes, I have to prepare, present, and then replace everything that I took to the class in its place back home. Never before did I realize how much stamina that takes. Doing two classes back to back is double the challenge. The fatigue that follows is overwhelming.  But then I have dinner to cook and laundry to do or grocery shopping and more class samples to make or I pick up a bug. 

In the end, I want  you to know that I am succeeding in my efforts to find my old self. I think  about what I was dealing with last year less and less. Going to follow up doctor appointments gives me less anxiety than it did at first. My faith is stronger than ever because I am grateful daily to be healing and moving forward. And I am empathizing with friends and acquaintances who are immersed in their own cancer situation. 

Keep the faith, ladies. I understand what you are facing. To each of you, if you need to talk, I will listen. If you have questions, I am here. Reading my blog may give you tips on how to deal. One day you will ring the bell and celebrate. Then you will become your own ROCKY and begin the healing journey. It is exciting because daily duties are doable. Amazing to think we want to get back to cooking or doing the laundry. Take it from me: it feels great! One day, you too will understand and you will appreciate good health more than ever before.

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.