2024 Update

Long time since I have posted on this blog. Just thought I would catch you up to date. My cancer journey is never far from my mind. It is a part of me, and when you ask how I am doing, I want to say that I have been clean now for a year and three months. My hair is growing back although it is baby fine. Slowly, the chemo drugs have stopped affecting my system. I have more energy, and everyday I thank God that I am alive and well.

Gladly, the oncology clinic and my primary has followed up many times, making sure my blood levels are where they should be. I've had frequent mammograms. They frighten me every single time. But I take a deep breath, pray, calm my blood pressure and try not to be preoccupied.

One day you may understand, especially if you have walked the breast cancer road. There's this lingering fear that peeks its ugly head periodically. I focus on other things so that it doesn't grab ahold of me and win. My life has been so busy since I've finished chemo, surgery and radiation. My busy-ness pulls me away from worrying too much.

What have I been doing? My husband and I tent camped last summer with our little dog, Claire, to the Adirondacks in New York State and in several state parks. We have funny stories to tell. Memories fill us. Our getaways were a kind of celebration of life together.  We are thankful always that the days were ours to enjoy. No matter whether we were gifted sunshine or rain, we thoroughly loved campfires, exploring, even finding some unique ice cream parlor to memorialize our successful adventure. 

I continue to teach quilting. The contacts with quilters locally and globally fill me. There is always a project ahead that is exciting. And their positive thinking buoys me in my down times. I am so grateful for these wonderful Zoom pen pals around the world. And in the good weather I spend a good deal of time riding my bike. It feels so good to have the energy to do that again. 

Believe it or not, I have also finished writing a book. It is quite simply about me, something that my family and friends will have always, so whenever they want to feel I am chatting with them, all they need to do is open my pages and read away. It's a story of sorts about the window in time that God is gifting me. I pray daily that window stays open for many more years because I am not ready to close it. There is still so much I want to do. Stay tuned. I'll keep you in the loop.

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.

The final bell

 I haven't written since September because I have been busy enjoying life. What with getting my final infusions every three weeks, I found myself more able to manage daily chores, planning for classes I was teaching, and travelling. The need to write wasn't on my plate everyday. I actually took that as a good sign.

We closed camp down the end of September and early October. That's always a sad thing to do. Saying goodbye to friends that return to their winter homes and families signifies the end of summer. We hang on to each other for as long as we can, especially when the summer was as nice as this one.

Early October I took a trip to see my Midwest sisters. We sewed together, chattered about this and that, caught up on our shopping, and celebrated our birthdays. Aging isn't so bad when you have wonderful sisters that share their birthdays with you. We represent April, September and October; my youngest sister, Donna (below) is 10 years younger than me and from Indianapolis. My middle sister, Betty (above) is from Chicago and five years younger. They are both gems.

One thing we did was a Corn Maze. I've never done one before. It felt a little like getting through this cancer year. We could not easily apply our clues to find the right sign, but eventually we made our way through with lots of walking exercise and good humor. At the end, there was a celebratory sign congratulating us on completing the maze and surviving the challenge. Ta-dah!

Yesterday - on Halloween - I completed the cancer maze and rang the final bell signifying my completion of treatments. It was an appropriate day since it had been a scary year. My husband surprised me. That was overwhelming because I knew he had an optometrist appointment at the same time and might not be able to make it. Together we rang the bell; together we had done my cancer this year, supporting each other throughout. I was one lucky girl.

This morning my oldest son sent me a message that he posted about my bell ringing on Twitter to all his golfing friends. (He is the superintendent of a golf course.) The response was overwhelming as each friend applauded the victory that 'Mama Bear' had over cancer. Never knew I was Mama Bear before. I sure am now! Warms my heart.

So, I've completed treatments. Now I pray God and I will continue my healing as the cancer drugs gradually leave my system. I told one of the nurses yesterday how I was nervous now that I would be on my own, working hard to make sure this cancer never returns. She reassured me the feeling is normal, but she affirmed, "we have done our level best to make sure the cancer is totally gone. Live, she said, and enjoy every minute." I intend to do just that...and support others who need a hand to hold along their cancer path.

I need to add a P.S. to this post. Yesterday when I was driving home from ringing the bell, I had a phone call over my car phone. A dear friend of mine had showed up at the oncology clinic with balloons and cookies eight minutes after I left. She was so upset that she hadn't been able to surprise me. What she needs to hear is how much that gesture means to me, and those balloons and cookies were a wonderful way for us to thank the nurses at the clinic. They work so hard and give empathy always.  God worked through you, Jean, and I am eternally grateful.

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

Covid round 2

I keep trying to get back to normal. Normal schedule. Normal routines. Normal bike riding and walking the dog. Normal health. But that's not quite working the way I want it to work. Not yet. 

This last week I worked the fair in the Bazaar building. Demonstrated the Accuquilt Cutting system for quite a number of people. Sold a few. Pulled interested sewing and embroidery enthusiasts into our exhibit so they would get introduced to the machines we had available to sell. There were many, and our display earned the Best Indoor Fair Display for 2022. Such a nice honor.

The weather was good for the most part. The crowds were pretty amazing actually, especially as the day progressed. More and more people came to enjoy the fair atmosphere. I thoroughly enjoyed them, especially you who frequent the Aurora Sewing Center stores. It was so fun to see you and chat about the projects you are working on. It was equally enjoyable to hear how your summer has been.

Well, with all that, I landed Covid again. Started feeling funky after my Monday infusion. So now I am returning to that Covid way of feeling, and I pray it is short-lived. I've been in touch with the Cancer Clinic to see if I should be medicating. If I don't hear anything, I'm on my own, letting my existing immune system do its thing. Maybe this will help it become stronger.

Monday morning - before the Covid blossomed - I had an appointment with my surgeon. She was happy to report that I do not need to see her again for six months. So in January, I will have my first mammogram and follow-up appointment. That feels really good. AND I only have three more infusions remaining. The count down begins!

I do find myself thinking about that first mammogram and wonder if I will spend time worrying about it over the fall and winter. That worrying business is not something I want to do. Somehow I have to choose to put my concerns on a back burner and move forward with living, again trusting that God will lead me into my enthusiastic way of being. Onward is the word of the season. January is six months away!

Signed with a hope for new health, the quilting cancer girl

Adirondack vacation

We took a vacation to celebrate my completion of chemotherapy, surgery and radiation. From August 8th to August 12th, my husband and I tent camped in the Adirondacks. What a relaxing joy that was! 

My Chicago sister, Betty, and my Indiana sister, Donna, were there with their husbands. Each family had a different campsite. Canoes were rented for trips out on the lake. Cameras snapped photos. Campfires were built. We ate suppers together, and of course, we talked non-stop.

Where did we camp? At the 8th Lake Campground above Old Forge and Inlet. The 8th Lake  campground gave us access to 7th Lake where for years - as kids growing up - our family tent camped for an entire month, transporting all our camping gear across the lake in a small motorboat. I will never forget how hard my dad worked, getting camp set up for all of us. 

It was where we learned to swim, canoe, kayak, hike, manage a small motorboat, and survive the curves that nature threw at us. We chopped wood to cook our meals. Dad dug a latrine, surrounding it with tarps to make it as comfortable as possible in all kinds of weather. We read together, played board games and card games, made family memories to last a lifetime. On Sundays, we planned worship services overlooking the lake and learned about God as our supportive, loving Father.

Our soul was filled by 7th Lake camping, and to this day, it captures our hearts. That's hard to explain to husbands, and you. Those early years like a rite of passage helped us girls be resourceful, discover independence, and find ways to entertain ourselves. We developed an internal strength in the wild that has followed us through life, helping us realize that we can handle anything.

It is one of the reasons I knew I could tackle this cancer and survive. My family has been behind me every step of the way, and so were you, my friends. At the same time, God lives within me, holding my hand when I need his strength and guiding me to caring doctors and nurses who are experts in their field. As I have said all along, "I am so blessed".

I am not finished yet. Four more infusions await me. However, I will complete treatment at the end of October, and then I will pray everyday for the rest of my life that cancer never fills me again, and that cures and treatments improve even beyond what they are today. So many 'out there' await miracles. I pray those miracles become reality. Look how far we have come already. God is in the process. Amen.

Signed within total relaxation, the quilting cancer girl