Short

With twenty of the 30 radiation days complete, I think it’s time for a short haircut since most of it has fallen out anyway. My pink, sensitive scalp looks and feels like a sunburn that requires frequent, gentle attention. 

I wonder if the loss of my hair - and short haircut - will make me feel like the last bit of normalcy in my life is fading away. With hair, people might not realize I have brain cancer. Without hair, there is pretty much no question about that, and no denying it.

On Monday, the day before my 58th birthday, we got home from radiation and decided to cut my hair. I sat in the bathroom as Ken began to cut some to about 2 inches. I looked in the mirror and we both cried. As Ken continued cutting, he kept kissing my head and telling me I look beautiful. 

Checking in the mirror a few more times, we decided to just get it over with. With scissors and clippers, Ken gently cut it all to about one inch, making it easier to apply aloe to my burned, itchy scalp. A few days later, we decided to cut it again, this time to about one-half inch. It's a little chilly, but it's much easier now to care for.

This morning, we again wrestle with the reality that we won't grow old together. The phrase "till death do us part" from our wedding vows has taken an unexpected turn, short of its romantic, far away fulfillment. The situation we are in demands we face our mortality. As we know, life is precious. Life is short. It is our desire to make the most of every opportunity, including this one.

I believe God uses words and images to gently prick our hearts to shine light and healing into all of the corners of our secret places. He loves us. He wants us to be free. He wants us to grow and experience abundant life, even if it is short!

“Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity...”  - Ephesians 5: 15-16a

 

Recent Photos

Jan 29, 2021 - Leanne and Deb have a belated birthday party for Nancy

Jan 26, 2021 - Sarah and Nancy go to the beach for a birthday snow storm sunrise

Nonsense

Now half way through the first phase of treatment, I had my status review with Dr. Santos. He was pleased with how well I am tolerating the radiation and chemotherapy, and encouraged me to continue working on the PT and OT therapy plans to help regain left side proprioception, assuring me that my brain will continue to rebuild neural pathways for about the next 9 months, or one year post-surgery.

On February 8, my current treatments will conclude. Then I will have one month “vacation” to recuperate in preparation for the next round of treatment. On March 9, I will begin 28 day cycles of chemotherapy, consisting of 5 days oral chemo followed by 23 days off, for the remainder of the first year post-op. 

Another thing we learned is that soon, I may also be wearing the Optune “hat”, a treatment for glioblastoma that creates low-intensity, alternating electric fields which help slow GBM cancer cell division and tumor growth. This will involve shaving my head so the four transducer stickers can adhere directly to my scalp. The transducers are wired to an electric field generator, which is wired to a battery pack, which I will carry with me in a pack for 22 hours every day. I imagine the wires might be difficult to manage, but I hope to find a nice hat to cover some of this “nonsense”.

Recent Photos

Jan 23, 2021 - Malorie, Matt, Nancy & Ken

Jan 24, 2021 - A snowy morning walk along the beach

Green Bay Packers Give Back

Last week, I told a friend that I was hoping to attend the Green Bay Packers division playoff game this week at Lambeau Field, but unfortunately, that was just not possible due to my currently compromised immune system. 

Later, when we got home from a radiation treatment, much to my surprise I found a box at my door from the Green Bay Packers Give Back program full of team gifts and goodies! Thank you, Green Bay Packers!

I’m thinking the Packers will “can” the Rams on January 16th! Then maybe... I’ll be invited to attend next week’s game in a heated box at Lambeau! Or maybe I’ll dream really big and Aaron will invite me to sunny Tampa for the Super Bowl on Feb 7th! That game is definitely on my Bucket List! Right?

Thank you, my secret friend, for telling my story to my favorite football team!

Go Pack, Go!

Yup, way cool! Thanks Green Bay Packers!

Recent Photos

Dec 10, 2021 - Long-time friends, Dave and Kathy come over for a visit

Dec 11, 2021 - Sarah and Mom cook up some delicious enchiladas

Dec 13, 2021 - Forever-friend, Lori stops by for a quick visit

From Isabel

God's tapestry of abundant care for us is revealed in many ways. The notes and stories sent to me are certainly part of this. The following letters are from my amazing niece, Isabel, written in early November when she learned that Aunt Judy had cancer.  I love her confident faith and her solid eternal perspective!

Radiation

Being a word lover, somewhere on the spectrum between a logophile and a logomaniac, makes names very important to me. When we were in the ER, and I saw my tumor for the first time, illuminated on the screen, I knew this needed a name. After a few days, the perfect name came to me. Bittersweet. Knowing that it is bitter to be diagnosed with cancer, and yet, sweet, knowing that God uses all things for good. In God’s economy, He doesn’t waste a bit of our sadness or pain or tears! That is bittersweet!

Of all the different kinds of brain cancer, I have a glioblastoma multiforme (GBM), the most malignant. Of all the different grades, I have grade 4, the most aggressive. These tumors are difficult to completely remove because they entangle themselves in healthy brain tissue. They often put down roots in “prime real estate”, brain tissue too valuable to risk damaging with surgery. On the day of my surgery, the tumor was 5.3 cm long, 4.0 cm wide, and 5.6 cm tall. Because the average GBM-4 grows at a rate of 1.4 % per day or doubles every 7 weeks, if they hadn't removed Bittersweet, it probably would have taken my life by now.

Following surgery, I was given 28 days to allow brain swelling and the 9-inch incision to heal before starting chemo and radiation. During this time, I noticed how fast my fingernails were growing. This made me nervously aware of a bitter reality - the tumor is still growing in my head. This made me anxious to begin radiation and chemo as soon as possible in hopes of slowing the growth of Bittersweet's roots.

This month of healing also included Christmas, and spending time with all of our children and grandchildren. With all of the distraction of this “cancer nonsense”, Ken and I had not prepared for Christmas! We talked it over and decided to do four things to celebrate. Our grandkids hung the wreath on the woodshed, they set up the nativity set, we read Twas the Night Before Christmas together, and we had a shopping spree at Evans where they each got to pick out a few gifts for themselves! This time together was very good!

To begin the next phase of treatment, radiologist Dr. Longo at Froedtert West Bend, took new MRI and CT scans to map the remaining tumor cells, a process similar to the one I had for the IMRI surgery. The 3D imaging was used to set up computer programs that plan the delivery of radiation using an Elekta Infinity LINAC. This machine uses “high definition dynamic volumetric arc delivery”, or highly focused radiation beams, to reduce radiation exposure to surrounding healthy brain tissue. 

Next, I was fitted with a custom made “mask” that secures my head to the treatment table and keeps me in the exact same position for accurate delivery of all my radiation treatments. While lying on a simulation table, two therapists placed a very warm, wet plastic mesh film over my face, shaped it around my head, with openings for my eyes and mouth. It cooled and hardened in about 10 minutes. The fit is very tight on my upper jaw, which makes my jaw sore, but prevents even the slightest movement.

On the evening of Sunday, December 27, I started chemotherapy using temozolomide, or Temodar, which makes the remaining cancer cells more sensitive to the effects of radiation. Chemo can cause nausea, so one Zofran tablet is prescribed 2 hours after dinner. An hour later, at 8:00 pm, I began taking the chemo. Chemotherapy is taken at home every evening, for 42 days. 

My treatment schedule includes 30 daily radiation treatments in West Bend, for six weeks, Monday through Friday. My first radiation zap was Monday, December 28th. While pinned to the table, with humming machines encircling my head, a thought came to me. I am knowingly exposing my brain to radiation, after all the years I’ve avoided standing too close to the microwave oven. How ironic. And so it begins. 

As I lay on the table, I look up and see myself in a mirror. Horrors! Is that me and my eyes looking back at me? I don't recognize me! I don't recognize anything! It seems so science fictional. The word barbaric is hard to chase out of my thoughts. There are probably thousands of other mesh masks, shaped by the faces of others, just stacked in some dark hospital storage room. I think to myself, “Chase away the word barbaric. Just breathe! Be still, He is God. He's got me, even in this, especially in this.”

What if there’s an emergency? How do I, or even can I, release myself? How can I get myself free? The sympathetic nurse reluctantly shows me how to release the five pins, “but only in the case of an emergency”.

After ten minutes, I’m released from this face trap and clumsily recombobulate my earrings, glasses, and sweatshirt. I go to find Ken in the waiting room. When we get outside, I rip off my COVID mask and the tears begin to flow. To get through the next 29 zaps, I decided to do something for myself. I am going to memorize Twas the Night Before Christmas and recite it during each radiation session. Attempting to lighten the stress, Ken asked, “Want to put some microwave popcorn in your pocket next time to see what happens?”

You don’t feel anything while getting radiation, just like you don’t feel anything while getting an x-ray. Some side effects are “sunburn” and hair loss in the radiated area, memory loss, depression, overall fatigue, and muscle weakness. A baseline neuro evaluation was done to measure any neurocognitive and memory loss from the treatments. I have blood drawn every week to see how my platelets and white blood cells are faring. Low platelet counts would mean I won't clot well, and a low white blood count would mean I won't fight germs well.

February 8 will end this first phase of treatment, then one month of rest and another MRI. Phase two begins in March with chemotherapy alone. The oncology team will keep an eye on the tumor’s progression with an MRI every two months for the rest of my life.

The Elekta Infinity LINAC radiation machine in West Bend

Ready to begin one of 30 radiation treatments

The rigid "mask" securing Nancy's head to the table

Recent Photos

Jan 9, 2021 - Celebrating Matt's 30th Birthday

Carolina Wrens hanging around for several weeks, one visiting the feeder

From Emilie

God's tapestry of abundant care for us is revealed in many ways. The notes and stories sent to me are certainly part of this. The following is from my sweet friend, Emilie.

Cornerstone

My hope is built on nothing less

Than Jesus blood and righteousness

I dare not trust the sweetest friend

But wholly trust in Jesus name

Christ alone

Cornerstone

Weak made strong

In the Saviour's love

Through the storm

He is Lord

Lord of all

When darkness seems to hide His face

I rest on His unchanging grace

In every high and stormy gale

My anchor holds within the veil

My anchor holds within the veil

When He shall come with trumpet sound

Oh, may I then in Him be found 

Dressed in His righteousness alone

Faultless stand before the throne

“...but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” - Isaiah 40:31

Recent Photos

The beauty of the usually unseen parts of God's creation

Proprioception

People have asked, so I will try to explain. 

The brain tumor damaged my right parietal lobe in an area affecting what is called proprioception and kinesthesia. This causes sensory feedback disruption from the left side skin, muscles, and joints. These sensory perceptions tell my brain my body’s position, balance, and movement, something I took for granted as a healthy person.

Being "off the matrix", and therefore, neglected by my brain, my entire left side wanders and gets lost in space. I don't have any idea where my left side is or what position it’s in. If I close my eyes and you move my left arm, I will lose track of where it is. My left side feels heavy, like wood, like it’s not mine, but somehow it always comes along with the rest of me. 

As a result, my left shoulder crashes into doorways and corners, my left foot trips, my left hand drops things, and I’ve spilled my water because my brain forgot the position of my left wrist and arm. Of course, Ken, the grandchildren, and the cats graciously forgive me for a few unintentional bumps, and a few accidental punches to the face.

While sitting in a chair, I was unaware my left foot was cocked back under the chair and my heel behind a crossbar. I tried to stand but could not because my left foot was stuck. I knew something was keeping me from moving forward so I could stand, but could not feel it was my left foot wedged under the chair. I told Ken I was stuck. He had to tell me to look at my left foot to see it was stuck under the chair. 

Situations like this occur regularly in a variety of ways. For example, getting out of bed can be very difficult because I can’t feel (sensory) or see (visually) that my left leg is tangled in the sheets and blankets. Often, my brain tells me my left foot feels alone, hard, and cold, but then I reach down and touch it and find it’s the same temperature as my right foot.

Every week I go to physical therapy (PT), occupational therapy (OT), and speech therapy. I’ve been making steady progress relearning how to do normal things, everyday things, and it has been challenging. When I first began, the therapist told me to walk across the room, turn around, and walk back. This sounds simple, but when I got to the end of the room, I couldn’t figure out how to turn. I leaned my head and shoulders to the left, but my feet did not turn. I hadn’t done this task since surgery, and now my brain-to-feet wires are somehow disconnected. This retraining should help reconnect them.

To compensate, my brain needs to use visual and right-side sensory feedback to locate my left side. Tasks have to be broken down into their basic steps, and speaking aloud to myself, or hearing others’ verbal cues help tremendously. I focus on doing one thing at a time, and after a few repetitions, somehow it is re-framed in my brain. The next time I do the task, I have the new framework and don't have to think about it much.

Something as simple as the pressure of a rubber band around my palm has helped my brain identify my left hand and it’s location. Using this same strategy, small weights for my left wrist and ankle should intensify sensory signals in the muscles and joints so I might know where they are in space.

Also affected is my left side visual perception. We haven’t been able to define or label this yet, but it is easily observed by how many times I leave the left side door of the fridge open, or a left side cabinet door open. This deficit is still a bit of a mystery undefined by the doctors and therapists, so I don’t have strategies to overcome these limitations yet. Reading is exhausting. My brain can't process all the input. I often close my eyes.

Seeing my frustration with typing an email, my son Tim suggested I try using an online program to learn how to type again. It is helping me relearn where the left hand keys are, but my hand wanders and I can't keep my fingers on the ASDF keys. Most tasks have returned quickly, but I am still having difficulty with typing. Maybe I have to break this into smaller pieces too.

Um, Nancy. The fridge door, dear...

Recent Photos

Jan 2, 2021 - Nancy, pointing out the quiet beauty of the recent snow

Jan 2, 2021 - Winter snow in the country

From Michael

God's tapestry of abundant care for us is revealed in many ways. The notes and stories sent to me are certainly part of this. The following is from my dear friend, Michael, in memory of his mother, Mary, who was "recalled" to Heaven a year ago on January 5, 2020.  

Mary and her son, Michael, coined the idea of being recalled when God called Mary back Home.  They got the idea from a 2005 movie called Robots where outdated robots would need repair, maintenance, or updating with spare parts, or else the robot would get "recalled" back to the manufacturer. Michael says "God just recalled Mom because her time here, her purpose, was complete. As a puzzle piece she was right where she was supposed to be and she was recalled to Heaven."

At the funeral pink wristbands were handed out that say LOVE LIKE MARY.  Mary taught me and everyone who observed her life, to love fully, and to love with no concern for the cost. She valued each person she encountered and made sure they felt loved! 

I took this photo of her funeral flowers and put her verse on it. 

Recent Photos

Dec 31, 2020 - Nancy, Judy, and Ken playing cards to end the year 2020! Bye!

Buddy demonstrates a modified Ardha Matsyendrasana yoga pose