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

Healing mindset

This last week was a busy week. Our Block of the Month Quilt Show came off without a hitch on the 23rd of July and then there was a week of camping and craft classes. 

I can't believe that quilt show was over a week ago! For so long I looked forward to seeing my quilt block ladies and the beautiful creations they designed. It was my focus, my much anticipated fun event, during chemotherapy, surgery and radiation. That goal kept me going: I had two quilts to finish and I wanted to be well the day of the show. 

Well, my quilts got finished during the week prior to the 23rd. Hurrah! And I was stand up ready for that Saturday, although mid-day I thought I might not make it. I had finished radiation the day before but recovery from radiation therapy literally does not happen overnight.

That is the reason for this post. You who may be experiencing radiation therapy need to know that it takes time to get your expected normal back. I still have mornings or afternoons and sometimes a whole day when I feel crummy with like morning sickness. I keep eating crackers, and then I'm okay. My ankles still swell. So I walk the neighborhood with my dog, ride my bike, and put my legs up in the recliner. Sometimes I feel bloated. 

Radiation in my body did funky things with water. So this is the way my body reacted to radiation. Your reaction may be totally different. Perhaps you will be fatigued. I was not.

The problem is that people around me have no clue I am feeling lousy. They are ready for me to be my enthusiastic self, back into daily life where work and play and routines are handled with ease. I do my best, believe me. I want to be there for my husband, friends, family and students, and then suddenly I fear I will be ill, and crackers come to the rescue. Thank the good Lord for Ritz!

I am learning there are moments when I need to withdraw to rest. Or I need alone time to recoup and separate myself from the noisy activity around me. But it's difficult claiming that time. I have been away from regular life for so long that I don't want to miss a minute. Besides, folks depend on me. 

Getting used to healing from this last year is my new challenge. I am still getting infusions once every three weeks. They are rebuilding my immune system. There are four more infusions on the calendar so I will be finished by the end of October. Then, the big bell is rung signifying the start of genuine recovery where I will no longer be putting something foreign into my body. Nurses tell me I may be back on track by the end of 2023. My initial reaction: that's just way too long!

I know better than anyone that I have run the gambit. You who are taking the cancer path know we have it rough because we fight for the privilege to live. That's the name of the game and it is not easy. Now with my making adjustments, being flexible, and practicing patience, God and I will work together to restore peace in the bodily house I so enjoy. 

With faith as my foundation, I have travelled this journey, trusting God as my guide, every step of the way. His support is amazing. Most days He carried my troubles and made my load lighter. Now I am ready to walk in His love into the healing year ahead, setting new goals for growth while nurturing my health. I am up to the next new adventures, and you will be as well, one day at a time.

The radiation bell

Celebration ensues! I finished radiation therapy this morning bright and early. My sister, Donna, from Indianapolis is visiting and she went with me. So, I had a witness to my grand finale: ringing of the radiation bell. 

The two of us were moved to tears, I will say. It has been a long haul this year. Donna has been right there with me, texting messages during cancer treatments, and listening to me complain over the car phone as I drove home from radiation. 

What I would have done without Donna, I do not know. She was my constant, my go-to person when I was down and discouraged. There would have been lots of quiet time. Her cheerful conversations kept me positive.

Of course, this is not the end of my cancer treatments. I continue with infusions every three weeks until November. But I can handle those. I am on the home stretch now. Fact is, I can see light at the end of this very long tunnel.

On the ride home this morning, unlike any other morning, there were what Donna calls 'angel rays' reaching down from the skies above. They were reaching through the clouds, letting me know very clearly that life is good and the future is bright. Thanks be to God for the direction this healing is going. Like I have said in many earlier posts, I am so blessed.

Tomorrow I celebrate in yet another way. The two Block of the Month Clubs I lead at the Aurora Sewing Center are joining together for a quilt show at the East Aurora store from 10-3. My wonderful quilting ladies are bringing their quilts and quilt tops to show what they have accomplished; I am so proud of them, and pray many folks pop in to applaud their learning efforts. I promise you will be amazed at their fabric choices and quilt designs.

As for me, this is the best way to celebrate. Since I view myself as the quilting cancer girl, this shows everyone how sewing has kept me going across the year. Whenever I did not feel well, I forced myself to sew, focusing on much more than cancer. Not once did I cancel a class because cancer interrupted. For that, I feel totally satisfied and grateful.

So, I close with a photo of my bell ringing this morning. I ask that you join us tomorrow in East Aurora at the Aurora Sewing Center for a chance to see quilting at its finest. Come celebrate with us: quilts, quilting knowledge, the quilting process, patience with this learning, and supportive friendships that are truly magical.