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 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.

Here is my hair

So this week, I removed my cancer caps. Yup. Cold turkey. Just took off the caps and here I show what hair has grown so far. Is it curly? Nope. Flat as a pancake and colors are mixed white, grey, a little brown. Will be interesting to see what I look like in November when they tell me I will love my hair.

Right now I'm thinking I may end up looking like Claire, my Yorkshire terrier. Kind of a brindle look is okay with me. We'll be a match made in heaven, literally! LOL

So why does one remove their cancer cap? Frankly, I was tired of wearing a hat everyday. In the heat, I was hot and sweaty. And then I wondered if my hairs would grow better if they saw the light of day a little more often. Probably an old wives tale but it made sense to me...like flowers grow better in the sun...and after all, I am once again a budding flower!

What really made me take my cap off my head was listening to my husband in conversation with friends. He said those who survived the concentration camps in Nazi Germany were glad to bare their heads as hair returned because it was symbolic. They were survivors and proud of it, and I should be proud too. Besides, he thinks I am beautiful, and that is enough for me.

To all my cancer friends out there, I will confess that going without my cap makes me feel vulnerable. I am exposed. I am showing you my natural self and my big ears and hoping you don't mind. I also don't want to make you uncomfortable around me. For some reason, I thought the cap would make us all more at ease, but who knows, maybe you seeing naked me is easier, and yes, it's okay to talk about my hair. I welcome it. Want to pet it? Go ahead. It's sooooo soft. Tom pets sit, often in his sleep. LOL

Signing out in good humor, the quilting cancer girl with five days of radiation left!!!

Share your cancer

Today was a little heavy. At 7:30 a.m. I was on the table for radiation. Then at 10:00 a.m. it was a trip to the cancer clinic on Park Club Lane for an infusion that lasted three hours. No more infusions now for three weeks. Six more to go, and then I'm done!!!

My oncologist, Dr. Soniwala, confirmed that radiation does cause nausea. That was a relief  because the radiologist argues how radiation never causes nausea. For me, it's a relief to know that it's not something I'm creating in my head. It really is my stomach. I will tolerate it. Only have this week and next. Then radiation is complete.

I went to the hairdresser today. She actually trimmed my hairs in the back and only charged $10.00. I actually have enough hair to trim, and it felt good to pay that ten bucks! Now I'm almost ready to bare my head and call it a victory even though the nurses tell me I won't like my hair until way next November. My comfort with going public is creeping up on me. Just you wait!

Drove back out to camp this afternoon and was so relaxed, I collapsed into a flat out 'after infusion' sleep. The fatigue I generally feel from the back-to-back radiation/infusion is often overwhelming.  Anyway, tonight we call bingo for our camp friends. Love doing that. They are all such fun.

At this point, I want to acknowledge how glad I am that God moved me to share my cancer with all of you. And my advice to anyone deep in the muck and mire the cancer scare can cause is to talk about what you are feeling with everyone. Really. I shared with my immediate family, work family, students I teach, and camp family.  Afterwards, strangers came forward in person and through text messages to talk with me about their own challenges. Our bonds are comforting. They help us live.

That my camp family knows what I've been managing this year is comforting. My husband and I can call bingo and be as normal as possible. Still, there are hugs and words of encouragement that surround us as we close down for the week and look forward to next week. 

Keeping your cancer a secret doesn't work. Honest. It is a very heavy burden. Having support and prayers from many makes a huge difference in your ability to keep going when it's difficult to get out of bed. To know you can send a text to an understanding cancer friend helps you catch your breath and find strength to move into the next day. So please. No secrets. In fact, let me know what you're dealing with. We can pray together as others have prayed with me. I will be your biggest cheerleader!

Signed optimistically, the quilting cancer girl

The radiation world

When I moan and groan about having to do radiation, I stop and look at my blog. It's been over a week since my last post already! That means only four days of radiation this week and I will have completed two weeks. Halfway through as of this coming Friday! Yippee!!!!!

I have to say that radiation has been kicking my butt. First of all, I drive to Harlem Road from Lancaster every single week day morning by 7:45 a.m. That is draining because I usually get up around 5 a.m. for a bathroom trip and then I'm scared to fall back to sleep for fear I will oversleep. So I lose out on my delicious last hours of dream time those five days each week.

Second, the radiation makes me nauseated. And I hate being nauseated. Tomorrow I intend to tell the doctor in case their are some solutions to that awful feeling. 

The whole business of checking in with the doctor though makes me laugh. Last week, he came into the room, and said, "How are you Mrs. Kisicki?" I answered with, "Well, it's the start of all this radiation. So far I'm okay." Doc came back with, "Great. See you next week," and he left the room. Don't  you wonder how much I will be paying for that 'checking in' time?

Third, radiation technicians and doctors are a whole new kind of animal. They relate to big machines and markers and CT scans and sonograms constantly. They know very little about conversation or giving a human the time of day. It's all about schedule, snapping to it, laying in your given position, and not moving. Then it's, "See you tomorrow," and you're done. 

Meanwhile, I am in awe of the huge machine that rotates around my body. You will see a photo of it here when it is standing still. The techs by the way were very uncomfortable with me using a minute of my  time to snap that photo, but human me did it anyway as I chatted away. I keep trying to let them know that I am caring and kind and interested in this process, and them. No dice.

In defense of one female radiation technician, on my first day, I shared my apprehension about radiation based on past experiences that my grandmother had with cobalt treatments way back in the 1960's. Of course, to me the 1960s feel like yesterday. 

But the tech commented that radiation had come a long way and now it was easier. I said, "Thank you for letting me share," and silly me, I was moved to tears. Very nicely and appropriately, she moved over and hugged me. For that reason, and that reason alone, I relaxed and am accepting the 'joys of radiation' as just another step in my ongoing journey.

I guess I am spoiled from chemotherapy and surgery where the nurses and doctors nurture. They are so positive, encouraging an upbeat attitude in us patients and sharing excitement when healing happens. In many ways, they have raised the bar for caring high. Quite honestly, the folks in radiation could learn a few things, and might even share a summer pleasantry or two. But you know me. I won't give up!!! I've got two more weeks. Hmmm....maybe I will win them over.

Signed, the caring quilting cancer girl

Angels among us

Two really positive things happened this last week, and both on the same day.  I want to tell you about them. Like you are sitting on my deck out at the campground on a beautiful sunny day, and we are talking. All the while, the birds warble in the trees, and the trees are moving to one of those summer breezes that feels so warm and good. 

So last Friday morning I officially began radiation. It kicked into gear a week earlier than planned, beginning on June 23rd. Best of all, it finishes July 22nd, one day before my Block of the Month Quilt Show at the Aurora Sewing Center store in East Aurora on July 23rd. Yup! I just advertised our big block of the month quilt show on July 23rd. LOL Hope you will come!

Today is Monday and I just finished my second radiation session, commuting to Harlem Road from the Attica area where we are camping at Skyline Campground. Its a 45 minute drive from here - which is the pits with gas prices what they are - but I will not give up my summer. It's worth the investment. 

What is radiation like? Well, it's decently indecent, and after that drive, the session lasts 10 minutes. Quick. Easy. Over and done. Then I'm headed back home. Side effects, you ask? I feel a little weird off and on. That's all I can say. There's a 'tired' that comes and goes. 

While there, I lay under a humongous machine that carefully maneuvers itself into place. It doesn't hurt. It doesn't annoy my claustrophobia, and I barely hear the radiation happening. It's hard to tell when the machine is doing its thing. I am happy the whole process is as easy as it is.  

So now the second positive thing that happened on Friday was that I had an opportunity to meet an angel. That is absolutely correct. Last fall, one of my wonderful block of the month ladies introduced me to her best friend from high school, a friend who is also a cancer survivor.  And that best friend mentored me all winter and spring, giving me a listening ear when I needed it most, and supporting me with honest, straight information about the cancer experience. Her name is Myrna.

My Myrna angel is very special. She is so upbeat and nurturing. I have connected with her on some of my darkest days or on days when I needed to know my side effects were normal. She always bounced back to me like an upbeat cheerleader, reassuring me and turning on pure sunshine to guide my path. 

I learned at our in person lunch on Friday that her hug is as marvelous as she is. Her conversation is terrific, especially as she shares her enthusiasm for exploring her family tree on ancestry.com. We also shared how much we appreciate the word 'unremarkable' whenever our medical reports underscore that there is nothing more for concern.

My prayer for you as you possibly make a cancer journey is that God puts angels like Myrna in your life. These gifts from God ground us during the worst of times, helping us to find courage, strength, and peace. Even more, these angels hold our hand through their words and convince us that we are truly a cancer survivor.

With love for Myrna, I am signing off, The quilting cancer girl

Slow recovery

These past few weeks have been interesting. While my energy is returning, I realize how my body is working extremely hard to recover. I write this post so any of my cancer friends understand we do not become what we once were overnight. There are no magic buttons we can push that say, "return to normal." How I wish!

I am noticing gradual transformations. One is that my skin is smoothing out. It is not as dry and chapped as when chemicals were infiltrating my body. The red spots on my arms and legs are thankfully disappearing. They were scary, like I was being taken over by some invisible being. Now I love rubbing my hands together because they are so soft and smooth from the natural oils that are helping my health return.

My complexion has more color again. Friends are commenting on how I am not so white and translucent. It feels good to hear, "You have color in your cheeks again." Makes me smile. Warms my soul. I am again going to be the human I once was. 

Even though I continue to wear my cancer cap, my hair is getting fuzzy on my scalp. I laugh and tell folks that I am currently a cross between a baby and my 98 year old father with hair sticking up in every direction possible. I pet my head! The clinic tells me I won't really like my hair until November. I live in hope. Still, my eyebrows and eyelashes return as does hair on other body parts. Kind of like puberty all over again. Sorry...TMI!

While all this is happening, my insides are straightening themselves out. My kidneys and I handled an extremely uncomfortable UTI a few weeks ago. That levelled me (my first UTI ever) but was handled with the help of a friend, an excellent urgent care center in Batavia, and meds that worked wonders. 

Slowly, my gastrointestinal self is coming around. That process has been slower. There are still things I cannot eat without unpleasant consequences. I miss vegetables. Someday. Someday.

Meanwhile, I have had two appointments with the radiologist. Last time, they fitted me to what they have happily nicknamed a 'bubble wrap silhouette'. It is a form in which I will lay every time I get a radiation treatment. In conjunction with a variety of pre-placed 'tattoos' on my body, it means I am positioned the same way every time and that helps the radiation process. My radiation will happen every Monday through Friday during July at 8:10 a.m. 

Do I wonder about the radiation? You bet. I'm not so worried about side effects as I am about the long lasting affects the radiation will have. The doctor so easily recites his monologue about how the radiation process transpires and how it is the last step in my cancer process. But I wonder, what does it really do to my body? How will I be different afterwards and for years to come?

So, my cancer friends, know that life continues to move us forward. We do chemotherapy. We manage surgery. We struggle with the side effects. We gradually find ourselves coming around to a world with more energy and hair and appetite and returning body functions. We handle radiation. 

The best part is that with God as our guide, we are coming around, and hopefully, prayerfully, we look to the good years ahead, without cancer. We know we fought the good fight; and forever we hold close to us a continuing peace that carries us into whatever the future holds.

Signed, The quilting cancer girl in recovery and radiation

Summer friends

Reconnecting with summer friends is such a pleasant adventure. I miss my summer friends in the winter. You possibly know what I am talking about. Weird but there are certain people who I do not see as often in the winter. So summer is about appreciating those precious souls.

First of all, I've never been a person with a lot of close friends. My role model is to pursue family as my close friends because when life is filled with work, there is not time for close friendships. And besides, work friends are often work friends, not everyday close friends. Yup. That's the way I grew up, pretty much.

I am not a big socializer. People learn that about me. I am one who watches others, amazed at their comfort within the social scene. I'm more withdrawn and take comfort in my own surroundings. That's me. Is that what you call an introvert? Who would think?

With that said, I have a neighbor who is one of the most social, thoughtful people I know. We don't connect much during the winter, just a text here and there or she'll show up at the door with a bag of yummy trail mix. In the summer, we ride bikes together everyday we can. The weather is generally lovely here in Buffalo - unless it's a rainy week - and so we ride evenings, sometimes mornings too. Best part is we talk while we ride, a mile a minute. 

She tells me the ups and downs of her work week. We talk flowers, gardens, bird feeders, family gatherings and grandchildren, her visits with psychics, and pet peeves. I'm thrilled with what a beautiful person she is inside and out. She calls out to folks walking their dogs and stops to help the elderly needing aid with a wheelbarrow. Her positive thinking brings such joy.

I particularly love how she plans thoughtful events for her grandchildren, all the while committed to designing her own legacy. She takes hours to plant flowers and shrubs in the yard, and then teaches her grandkids how her plants are named so one day the grandchildren may attach memories to their time with grandma in the garden. Recently, she purchased 100 tea lights. Next time the kids are over, each will get 20 lights to put around the room. Someday they will remember, she says, that I have been a force in their life.

There are other summer friends who camp with us at the campground near Attica. One family comes up north from Arizona each summer. Two other families are from the Buffalo area; two more are from Florida. 

We talk for hours on our decks about anything and everything from life in the city to recipes and gardening. Some of us sew together, enjoy campfires, Monday night bingo, occasional campground concerts, and 'just being'.  One thing for sure: we help each other with whatever needs doing, and that's special. These folks have given me huge support across this last year. Each individual is a gem. I am so blessed.

As I look at the sunshine outside today, I include a huge thank you in today's prayers for all my  summer friends. You accept me for who I am and enrich my days with your kindness. You will go beyond cancer with me because that is who you are, and cancer for me is something we have tackled together, within the exchange of life stories, bike riding, and recipes. Just another challenge that makes us stronger together.

Staying busy

This has been a good week. I finished one t-shirt quilt for my son, Jr., in Massachusetts. That was picked up and delivered last weekend by another son, Darren. It was fun making the quilt because all the shirts were Harley Davidson shirts, and if you know them, the Harley shirts are beautiful. They are really a joy to quilt. So happy that Jr. is thrilled with the results.

On Wednesday I finished two t-shirt quilts for the grandchildren of a friend. Both were fun to make as the t-shirts I was given told the story of their first ten to twelve years. So the quilts are a hug from their childhood memories that will certainly be treasured for years to come. Their grandmother was thoughtful to have the quilts made. 

Then I continued work on a double quilt for a new graduate. The top has been sewed together and will be quilted when we get home from camp, and after my Tuesday infusion. The quilt should be done and ready to deliver on Wednesday. 

So after last week's moaning and groaning and trip through whining country, I got myself busy and now feel good about my accomplishments. Moral of that story: when feeling down in the dumps, jump into a project or two or three and lift yourself up. No need to wallow. Wallowing doesn't improve anything.

There is so much for which we can feel grateful. And in my prayers, I let go of 'the stuff' that bogs me down and let God get back to guiding my way. Have had spontaneous encouragement from multiple conversations with quilting friends this past week, friends who just happened to call. Then my sisters shared conversations, as well as my sons and hubby. What would I do without them? 

As a special ad-on gift, we connected with a bird, after the sweet thing flew into our front window. Yes, we feed the birds, and the finches have been delightful this spring. They are bright yellow now, but sometimes they do not look where they are flying. Tom rescued this bird from the window sill and for about a half hour we cheered up our little friend. Then he flew away, ready to conquer the day. 

I have learned that if I am in need, I can reach out. Besides, it's the little things...like that bird...that make a difference. I often reach out to my sisters. There's Donna in Indiana. She is so busy and bubbly that when I call, her enthusiasm spills into my life. Before I know it I am excited about what is happening around me. 

Talking to my Chicago sister, Betty, often means texting. She is so caring and kind, and she's a funny speller. We laugh about 'tomatoes' instead of 'tomorrow'. (Inside joke!) I can hear her giggles even through texting.

So guess my post for today is about staying busy, keeping God close in your heart, and reaching out. For me, the responsibility is mine to stay focused on the positive, and to appreciate the God given support that comes when I least expect it. Communicating with the good Lord so often means prayers are answered by you folks 'out there', or a sweet, little bird. I am so grateful to know each one of you, especially as you inspire me to support others who are on a similar journey. 

Signing out and grateful for you all, The quilting cancer girl

The truth

I am going to tell you the truth. That's what this blog is about. The truth. 

I found myself back at the beginning today...back to feeling lost and anxious...only this time in the radiation world. I've found my way successfully through all the cancer protocols, but this radiation business happens in a whole new arena and it makes me apprehensive. 

After my hard time with the radiologist right before the lumpectomy in April, it is difficult to feel at ease with yet another radiologist. My unanswered question is does a radiologist have feelings or are they a group of doctors who are numb to the human experience. I am uncertain about how to respond to that, and hope that this time around the radiology barn I come away with a more positive outlook.

So this morning was not hard. I met at length with a nurse to fill out paperwork and answer lots of questions regarding my history. Then I had the freedom to ask all kinds of questions, after which time I watched a 10 minute educational video. The radiology doctor came in and recited a memorized speech about radiation therapy. The nurse returned and then I was transferred over to a secretary who schedules appointments. It all seemed so mechanical. 

Interestingly enough, as I drove home, I was angry. I am not sure why. I know psychologically that I must have this whole breast radiation to insure that my cancer never comes back. But I don't have my next appointment until June 14th and then it will be two weeks later that I start radiation. That is July and for the entire month I go every weekday for radiation.

That sure does mess with my summer. During the winter when chemotherapy was the pits, I focused on the pleasant joys of summer to keep me optimistic and upbeat. We love to go camping. July is the best month, great for hanging out in the hammock and spending time with good friends.  

And I have to commute back and forth to wherever they send me for twenty treatments. Worst of all is hearing that I will be fatigued and need to sleep. Darn. I slept away the winter and now I'm going to sleep away the summer too? 

I have loved having my energy return. Just today I finished two t-shirt quilts. Woot! Woot! Last week I finished one that was transported to Massachusetts. It's awesome to be my 'self' again. 

So this is one of my rare pity parties? I guess so. I dumped on my husband when I came home from this radiology consultation. Poor man. That wasn't fair to him. His reassuring response was that we will get through this too. My guess is I need to spend some time in prayer, and probably have a good cry. Haven't done that yet. In time. In time. 

What I actually decided to do was see if I there was something funny 'out there' to make me laugh or at least tickle my funny bone. A saying about a scarf came across my screen first. Was just silly but made me giggle. 

Strange how some little thing can get me out of my funk. And then I found this picture of the small elephant, and suddenly, finally I was able to cry. Now I feel so much better. Relief. Sigh. That's the truth and I'm sticking to it. 

Signed in a more positive state of mind, The quilting cancer girl

My camping soul

 No. I haven't stopped writing my blog. I've taken these last weeks to tackle COVID. Yup. My turn around the Covid world, and thanks to medication provided by my oncologist, I am guessing my trip through this illness wasn't as bad as it could have been. Hallelujah!

My husband works at Lowe's. They stopped using masks some weeks ago. And so we both stared at each other and the wall together, wondering if soon we could be well and drive out to camp. That is what we live for every year...camp.

We are fortunate to have a campsite at Skyline Campground near Attica, NY. Wonderful friends there support and love us no matter what challenges we face. Together we tell stories about our relative winter adventures, all while sitting on the deck, around the campfire, or just standing and talking in the sunshine. It's the best.

The winter season - from October to May - drained my psychological and biological battery this last year. Trudging through the chemo journey and then surgery means the worst is behind me. Now I am hoping that camp will give me the boost to muddle through radiation so I can enjoy the rest of the summer. I need that camp recharge. 

Recipes are shared along with delectable creations, aimed at teasing the taste buds and keeping the weight on. Just this morning I had the best French toast casserole from the neighbor next door. It was to die for! I think I need that recipe!

In my book, this is the best time of year. As people open up their campsites and pine sap leaves its mark, anticipation for a pleasant, restful summer floats softly through the air. I breathe it in every May, recharging my 'self', after a long winter. It feels similar to those first days of vacation from elementary school in June. Our steps are a little lighter and summer laughter lifts our souls. 

I have already raked the campsite and swept the deck. A campfire is blazing - and it's only 11:00 a.m. The small shed is open so we can pull chairs out and set them around the fire. The awning is up; the picnic table is in place. And already I've had visits from three or four friends, just to catch up. 

We are tending our plants. I've walked the dog. My senses are enjoying the pine trees and soon the hammock gets hung. Now I'm about to share some molasses cookies with the neighbors, and later this afternoon, more friends check in from Phoenix, Arizona.  This is the life. We are living the dream. I am so blessed.

Signed an enthusiastic camper, The quilting cancer girl

Today's update

Last Thursday I had my follow-up appointment with the surgeon. Great news for all of us: I am cancer free. Such relief comes from those words!!! Instead of "You have cancer," it is, "You are cancer free."

Thursday was a chilly, sunny spring day and I tasted freedom from cancer overload, carried since last September. New beginnings. Along with the spring flowers and budding trees, I will bloom again.

Still, there is more to be done. Complete freedom does not surround me until after a month of radiation and continued infusions every three weeks into November. I have my consult appointment with the radiologist on May 24th. That is the day I learn of my radiation plan. How exciting!

The surgeon tells me I have the worst behind me (chemotherapy and surgery). She says radiation will be a piece of cake. Hmm. I know I am dreading the radiation even more than the other two, because of family history with radiation. My grandmother and mother both had radiation and it was bad. Today things are different, I am told, so I can relax and not worry.

You will be happy to know my energy is returning. Woot! Woot! I have completed several quilts in the past week or so. I am riding my bike and mowing the lawn. I've been baking and cooking again, much to my husband's delight. And yesterday we opened camp at the Skyline Campground out near Attica, NY. Feels so good to be back there. 

I continue my 'struggling hair farmer' status. Is my hair coming in? Yes. I am happy to announce. Yes!!!! However, I look like a brand new baby (or my dad at 98) with uneven short fuzz making my head itch. This too will pass. I know. The fuzz does give me hope for better hair in the future. I pray it comes in consistently so I don't have to wear a hat all summer.

Interestingly, the clinic presented me with three free summer caps at today's infusion. The nurses said I will like my hair again but not until November. November!!! Sigh. Patience is possible actually, knowing that I am cancer free. God has been good to me...to us! We have pulled together and I am succeeding because you love me. Thank you. Thank you. It really does take a whole year, and we are so good together. I am so blessed, and very grateful.

Signing out as the struggling hair farmer, The quilting cancer girl

I am scared again

I can't believe it has been a whole week since my April 20th surgery! Guess I should be thrilled that time is moving forward better than it has for the last six months. There were some winter days where that day felt like a year all by itself. Admittedly, I was a bit bogged down and discouraged, but I have been true to my mantra, "Never give up."

An interesting awareness has been gnawing at me this last week. I am very aware how since surgery day, I have turned my feelings off. I have felt a bit numb, like the world is in fact moving forward and I am not feeling as grateful or humorous or thoughtful as I have been across this cancer journey. I want to be an active participant in the day to day, but I'm not there yet. Darn!

It is almost as if I met a goal, that being the surgery. I had to do chemotherapy before arriving at the surgery date. I made it. The lumpectomy was harder than I imagined. I got through it. And now I'm trying to figure out what is happening inside my soul. Not sure what to say. It's weird.

I do realize that I am anxious about what the test results from surgery will show. And beyond that, will I have to do radiation for a month? I've been praying over this for months.

Positive feelings about the whole radiation process do not exist in my frame of reference. After experiences my mom and grandmother had many years ago, I fear radiation. Now I understand that it is easy to discount those familial experiences as happening in a time when medicine wasn't what it is today. Still, in my heart and psychologically, I harbor scared childhood feelings about radiation. 

So, I spend much of my sewing time pondering my current numbness. Maybe if I turn off my feelings, and leave it all to God, I will get passed this. How do I admit that I have inserted myself back into the 'what if' scare I felt when I was first diagnosed. Even though I keep slapping myself - figuratively speaking - I'm there. Can't help it. Pray as I may, the apprehension is alive and well in my gut. 

May 5th is my follow up appointment with the surgeon. By then, my incisions should be healed, and I will hear what the labs reveal about my cancer. 

Meanwhile,  my husband and I drove out to camp on Sunday during that glorious 80 degree April day. What an awesome way to enjoy a respite from daily worries. The trees are greening up. Birds are showering us with spring songs. We opened the slides on our trailer and raked the campsite. Felt really good. I must admit I am looking forward to summer.

I'm finding my energy a little at a time and I'm searching for the enthusiasm that generally fills my soul. When that comes back strong, I can handle anything, and my scare will subside. This current state of mind must be a plateau in the larger scheme of things, a pause, a time of healing, and I keep thinking, no news is good news. Just maybe, by some miracle, I'm okay. Now wouldn't that be wonderful!

Surgery day

 Today was my lumpectomy surgery. It was a whole different chapter to my cancer adventure. We were up by 4:10 a.m. (hmm....I was up by 4:10) and after my morning prayers and shower, Tom was up too. With a nod and a kiss, we left for Milliard Fillmore Suburban Hospital and a 5:30 a.m. arrival. Checked in with a very chatty, pleasant admission lady. I was her first patient admission for the day. If she hadn't been caring, I just might have questioned whether this surgery was necessary! Not really. LOL

Was called into my first accommodations by a nurse named Mariellen. She was truly an angel. We connected immediately, exchanging information and stories. I loved that she was a good listener, and had a sense of humor, whereas I was a bit nervous. Not scared. Just nervous. And my blood pressure registered at 180. Maybe I was scared.

The other reason this woman was an angel. She inserted my IV in a split second, and I never felt her do it. Hallelujah! Then she convinced me that a short term blood thinner shot was required - in my upper thigh...Egads - and again, she was so good, I never felt it. God works through genuinely talented people.

And then I was wheeled through the freezing halls to see a radiologist. Honestly, this was my scary part. He was handsome, caring and kind, but his job was to insert a J-shaped wire into my left breast while giving me a mammogram. Actually, the wire is required so the surgeon knows where the microchip was placed during my initial core biopsy;  a consequence of my cancer lump disappearing during chemo. That wire indicates from where to take tissue samples during the lumpectomy. 

You have to know that I was shaking cold in that room as the wire was inserted. It might as well have been a fish hook. My breast was not numb. No lidocaine. Just me clutching the mammogram machine like I was squeezing Jesus's hand. The doctor and his nurse assistants kept telling me I was doing well.

When they took a second mammogram and readjusted the fish hook, I thought I was a goner. But then I felt better because they taped a paper cup over the wire.  Talk about taking my breath away!!! The fashion statement was outstanding, literally and gave me something to laugh about.

Back in my original room, my lower legs were wrapped in plastic covers. Plugged into a pump that hung on the side of the bed, the plastic covers expanded and contracted slowly, one leg and then the other. That set-up also protects against blood clots. 

Tom was there, watching TV; then the pre-op parade began. We met a variety of medical people: the assistant surgeon, interns, the anesthesiologist, and the surgeon. I can list their names, but why? 

The cutest was Jake, an anesthesiologist, the last jovial face I saw after getting situated on the narrow operating table (I was sure I was going to fall off) in the HUGE operating room. Filled with machines, attendants, and freezing cold air, I very quickly left for la-la-land and dreams of a completed surgery.

About an hour and a half later, I awoke to the fourth room in my adventure, shaking and quaking - No, the room wasn't shaking. That was me. It was a large recovery room. Nurses scurried. They were angels wrapping me and my bare head in hot blankets, bringing warmth to what was a very cold day. Sigh. Eventually, they gave me medications to stop the shaking and slight nausea. Without them, I might have gone back to sleep.

I became more human after an hour or so, and then was pushed to a fifth room where I got dressed and was given a snack. Apple juice and graham crackers were not my choice for a first meal. However, they were a signal that my stomach was better. And before I knew it, Tom had my coach to the hospital exit. He whisked me home - the gem that he is - and I slept in my beloved recliner for nearly four hours.

This story of my surgery is 'out there' so some of  you doing a lumpectomy might know what is involved. It only took the morning; we were home a little after lunch time. 

This is not meant to scare anyone. Your situation will be different. For me, with angels for nurses and Jesus holding my hand, this was a miracle day. The start of my morning devotions: Be Not Afraid...for I am with you!

My two incisions are tolerable with only extra strength Tylenol; my honey is happy with soup and sandwiches for supper. I am so blessed. Besides, I really got to see a lot of the hospital. It's amazing, and I was a fashion statement for a while, thanks to a very simple paper cup.

Awaiting now the tissue results from this day, I sign off,  The quilting cancer girl.