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