Journey Home

Nancy and I have been working on a draft for several weeks, but now things have changed, so I'll share what has been happening since April 21.

On May 6, we had a new MRI done and a consult with our oncologist. It was a bit discouraging hearing the cancer had shown some growth since the last MRI. We were advised to consider starting treatment with the drug Avastin as a "quality of life" measure, being aware that the drug does nothing for treating or inhibiting the cancer's growth. The more we read about the drug, the more we thought of the need to trust God and not limit Him. It just seemed out of character to put poison in Nancy's body to "improve quality of life", when that phrase can have different meanings to different people.

It is our belief, based on the facts clearly laid out in the Bible, quality of life begins with our relationship with Jesus and His work on the cross, His death, His resurrection, and the resulting restoration of relationship we can have with our Heavenly Father. Paul, with all the things he suffered, makes this abundantly clear. Solomon and Job talk about this, and David beautifully articulates many life thoughts and illustrations of this. My favorite and a most concise statement of this is found in Romans 8:28 where it says, "all things work together for the good, for those who love God and are called according to His purpose." Understanding this is foundational. Quality of life is having our Heavenly Father embrace us with His love and mercy as we trust in Him through all life's circumstances.

Some of April and the entire month of May was a time of waiting. Every week, Nancy's blood labs returned with flags indicating acute issues prohibiting her from continuing with round three of the monthly chemotherapy treatments. As we waited, Nancy continued to decline in function with left side proprioception, reading, speech, and general cognitive work. Why was this happening? What was God doing in all of this?

Then on Monday, May 31, Memorial Day, I took Nancy to the ER at Froedtert, thinking she may have had a minor stroke. A new CT scan was taken and no stroke was indicated, but after I saw the scan, I realized Nancy was in trouble. 

On June 2, we got a call from our oncologist who said after a review of the CT, the doctors feel there is no need to continue any chemotherapy or other treatments, and no follow-up MRI will be done. The evidence in the CT is sufficient to see there has been substantial change in the growth of the cancer, and there are no options left to consider. At this point, we were directed to seek palliative care and hospice.

The doctors found the following. 

She continues to decline clinically, despite chemotherapy and supportive measures to treat her GBM and left sided weakness/neglect.

Marked vasogenic edema on right parietal with likely disease recurrent at center with significant mass effect and MLS.

CT showed increased size of GBM, increased vasogenic edema, and new midline shift (right to left) of 9mm concerning for herniation.

The right frontoparietal GBM mass appears to have increased in size by at least 4mm since the study performed 4 weeks prior, now measuring 3.4cm.

 

Thursday, June 3, Sarah and Nancy near the beach. The two most beautiful women in the world!

On Friday, June 4, our 38th wedding anniversary, Nancy and I went out to breakfast with two of our dear friends, Michael and Carolyn. After breakfast, we met with two Sharon S. Richardson Hospice representatives at our home. After some paperwork, we planned to meet with a hospice nurse the following Monday at our home. We intended to stop at our local funeral home to gather some  information, but we were both too exhausted to go. Just the kinds of things most people do on their 38th wedding anniversary, right?

On Sunday, June 6, after tucking Nancy into bed, things took a significant turn for the worse. Since then, Nancy requires 24 hour care. Monday at noon, the hospice RN started Nancy on morphine to control the headache from the intracranial pressure. 

On Monday evening, a hospital bed was delivered. I put the bed in the living room so we can all be together, and Nancy can have a great view into the woods and watch the sun set to the west. 

Tuesday morning Nancy said to me in the most innocent voice, "I guess we get to spend one more day together." Since Tuesday evening, Nancy can no longer swallow, so she can no longer eat or drink. She cannot talk or move around on her own. She is now readying for her journey home to be with her Lord and Savior, Jesus and her Heavenly Father. 

Wednesday, June 9 was a day filled with family and friends supporting Nancy and family.

Things are much different now, and changing rapidly.

Tuesday, June 1 with Tyler & Amanda visited with their beautiful new daughter.
We have a special place in our hearts for this family!

Wednesday, June 2 my Mom and Dad visited. We had "juice burgers" from Leon's and spent some time at the beach.

Wednesday, June 2 Nancy can't walk down to the water anymore, so I carried her.
I think her face says it all!

Friday, June 4, our 38th wedding anniversary, we had breakfast with our dear friends Michael and Carolyn.
Now 38 years married to this amazing woman so full of grace!
Friday afternoon, we met with Sharon S. Richardson Hospice and set an appointment to meet the RN on Monday.

Saturday, June 5 the Ryan Baumann family felt lead to stop by while we were at the beach with our kids and grand kids. What a blessing!

Sunday June 6 the three of us went to Christopher Farm gardens for a SCCCF event.
We had a great day, but it seemed like Nancy knew something was wrong.
I knelt down to take this picture and tell her I loved her. She said, "Mmm, I know you do.".

Monday, June 7th Nancy is very happy to be in her new hospital bed in the living room

Nancy and "Pops" sharing their love for each other with hand squeezes

Nancy and her "Mum" looking forward to meeting up again soon

June 10, Pastor John praying with us

Recent Photos

Accepting What Is

Nancy mentioned to me some time ago that she started a draft for a blog post. We never found time to work on it together, but I stumbled across it today. These are her thoughts, with very little editing on my part. I trust that her words will touch those who need to hear them.

Nancy's Thoughts

There is only one thing harder than accepting what is; living in denial of what is. Acceptance is a lot of work, daily facing the reality of what is, feeling the pain, and staying connected to who I am and who God created me to be.

As I struggle to accept what is happening to me, I look in the mirror and reality strikes me hard. I wonder is that really me dying of cancer? How can that person be me? How can this be happening to me? I look in my children’s faces and realize that they are going to lose their mother, and my husband is going to lose his wife, and this is how my life is going to end. But it helps to know that Ken and the kids can - and will - take care of each other. 

Gratitude always lets fresh air in the room. My whole life I have dreaded the thought of when I would lose my mom. I am so blessed that she and my dad are alive at ages 90 and 89. My loving and faithful parents have watched over their 6 children, always available to encourage us and cheer us on to live, love, and grow. I wish I could continue doing this for my children. 

Before all of this, I readily accepted the many good times and blessings my family and I have had over the past 58 years. But looking back, It seems my prayers of gratitude were slightly obligatory and somehow only half-hearted, lacking the deeper sense of appreciation from the vantage point of today. Often when I think I am accepting the reality of my diagnosis, the gravity of my future smacks me as I grieve new awareness of my losses.

This past January, it was time to face the fact that I will never drive a car again, so we sold my car. In early May, Not long after, I realized that I will never ride a bike again, and so we considered selling them. Thankfully, our awesome neighbors were already interested in them and so they bought them. Now we see Jason and Janelle riding past our house with happy faces and their dog Callie running along beside them. I thought Ken and I would be riding these bikes for years to come, into our old age with bad knees and all.

June 3, the day the doctor called and recommended we stop the cancer treatment, our son Andrew wrote a poem that put many of our feelings to words.

Between

The clock ticks loudly now, and much too fast.
Her moments slip away so soon, it hurts.
Nothing seems to last.

We linger, too, and unbearably so.
Eons pass, her time expands and contracts
Around our sorrow.

Here we wait, hardly breathing, suspended 
Between the past we loved and a future
We can’t comprehend.

I often feel like I will wake up from this and find it was just a bad dream. But I want to accept this part of my journey knowing that God is good, and that I can trust in His sovereignty.  God cares for me, and He loves me, and He loves and cares for my family. I can be still and know that He is God.

In God’s economy, He doesn't let an ounce of our pain go to waste.  Our tears are not futile. They have a purpose. God knows each of His children intimately, and every tear we shed has meaning to Him. He remembers our sorrow as if He kept each tear in a bottle. In the end, He will share His joy with us when 

He will wipe every tear from their eyes.

There will be no more death, or mourning, or crying, or pain,

for the old order of things has passed away.

He knows. This has always brought me comfort. For the many people who suffer and might think that no one knows or cares, He knows. He cares. God is a tender-hearted Father, a God who feels with us and weeps with us. His promises are a source of comfort to us. 

The Lord said, “I have indeed seen the misery of my people in Egypt. I have heard them crying out because of their slave drivers, and I am concerned about their suffering."  --  Exodus 3:7

When Jesus saw her weeping, and the Jews who had come with her also weeping, he was deeply moved in his spirit and greatly troubled. And he said, “Where have you laid him?” They said to him, “Lord, come and see.” Jesus wept.  --  John 11:33-35

May 6, 2021

After my brain surgery, we had our first follow-up appointment at Froedtert’s Hope Clinic for cancer patients. It seemed to take forever to make our way down the many halls to get checked in. As we were walking, I was thinking of how many people there were in the halls and waiting rooms we passed by, all with cancer. I felt pretty sad and in denial that I was now part of this group. 

Over the weeks and months of doctor appointments, I was able to pick out the people that were probably there for the first time; they still walk with the most normal function. Then there were the others, those being pushed in wheelchairs by worn-out caretakers looking so exhausted, waiting for even just a little relief to come. Oh, how I did not want to be in these waiting rooms. How I did not want to be the one in the wheelchair, and I didn't want Ken to be the vacant-eyed spouse pushing my wheelchair.

At the Jan and Feb appointments, we checked in and then took the opportunity of walking around the hallways for exercise during the 20-minute wait since it was nice and warm inside. Those days are over now. Here I was feeling good having fewer deficits and enjoying the ability to walk around and get some miles in.  I wonder what the other people in the waiting rooms thought of me knowing that this was a very temporary stage, knowing I would soon be like them, in a wheelchair within weeks.

May 6, we find the necessary transition to a wheelchair emotionally difficult yet somehow welcome

Well, this last week I couldn't walk the distance to the Hope Clinic, so Ken got a wheelchair from the front desk. I felt a deep sadness rising in the core of my body and soon I was sobbing in the elevator.

So how am I doing? I am losing my left side rapidly. I can no longer do my own self-care, I can't walk unassisted, and I can't use the stairs. I feel like the expiration date on my body might be getting close. While I love life, I think the time to stop trying to preserve this body will soon come to an end. After all, I have terminal brain cancer. It's going to take my life.

I have peace about the surgery, radiation and chemotherapy treatments I have done so far, but I don't want to spend my last three months fighting cancer or battling the side effects of chemo.  I want to make the most of each day, enjoying the beautiful place we live, and having coffee or tea on the porch with anyone that stops by with fresh baked homemade cookies! Or if you want to make dinner, we can eat, play a game of cards, and talk about what God is doing in our lives. 

Trust in the LORD with all your heart,

and do not lean on your own understanding.

In all your ways acknowledge him,

and he will make straight your paths. --  Proverbs 3:5-6.

So teach us to number our days,

that we may apply our hearts unto wisdom.  --  Psalm 90:12

Now that I am seeing how few days I have left, such that I am numbering them in months and weeks, I am hoping I'm not forgetting anything. Whenever I start to worry, I think about how nice it would be to have a checklist to go down and check things off.  Kind of like when we pack for camping and double-check the list to be sure we packed salt and pepper and matches. Then I remember that I only need to live in this moment and just do the best I can. I certainly don't want to waste today crying about tomorrow!

Naked I came from my mother’s womb, and naked I will depart.

The Lord gave and the Lord has taken away;

may the name of the Lord be praised.  --  Job 1:21

For God so loved the world that he gave his one and only Son,

that whoever believes in him shall not perish but have eternal life.  --  John 3:16

God loves you and me and wants us to have eternal abundant life.

There is only one thing harder than accepting what is; living in denial of what is.

Note

There is so much sadness and so much to grieve in this process, but Ken and I are doing our best to make every day count. Please please let us know if there is something you would like to talk to us about.

Recent Photos

Matt and Mom sharing a moment together

The Brian and Rebecca Kirk family came from Pennsylvania to visit and say goodbye to "Aunt Nancy"

Matt, Tim and I went to the beach without Nancy for the first time.
It's amazing how much relationships add to life, even at the beach.

Resign

/rəˈzīn/

verb

1. voluntarily leave a job or other position.
   "he resigned from the company in protest of the treatment of his co-workers"

2. accept that something undesirable cannot be avoided.
   "she resigned herself to a lengthy session"

3. reconcile oneself to

4. become resigned to

5. become reconciled to

I’ve been out of school (work) and on leave since October 12, 2020 and my FMLA period expires in a few days. Since I am unable to return due to this bittersweet journey Ken and I are on, I wrote a letter of resignation today, as I “accept that something undesirable cannot be avoided” and resign myself to this change as well. So many changes.

It is with much sadness, grief, and struggle that I write this letter to inform you that I must resign from my position with the Cedar Grove Belgium High School upon the expiration of my FMLA period. Thank you for the wonderful years together and the joy I received from being a part of a team that is making a difference in so many young lives! Although I am no longer walking the halls, helping out in the classrooms or at lunch, my commitment to relationships will always continue.

Of the people that know me, most have said there is something different about me; I would say that thing is my ever-present sense of eternity. When it comes time to die, make sure all you have to do is die. I like to live with a clear conscience and short accounts. My faith in God, and these practices, have given me a life full of joy. Small things matter. The small things add up to your days. The way you spend your days is the way you end up spending your life. 

Blessings to you all.

We frequently think we are in control of our lives, when really we aren’t. The sooner we resign ourselves to that fact, the less struggle we will have with it. Then we can reconcile that God really does want what’s best for us, and He is in control, no matter what life looks like.

Recent Photos

Big Falls County Park, east of Eau Claire, WI

God's Many Hands

Nancy and I wish to address the amazing team of people chosen to participate in this life-changing display of God’s mercy and loving kindness towards us all, and say ‘thank you’. To meet with each of you face-to-face in this experience has truly been a blessing to so many, far beyond the two of us. It is God’s hand, and His breath, that keeps us and sustains us. It is God that directs our paths, even when it seems there is no path at all. God is faithful, and trustworthy, always!

Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. -- Proverbs 3:5-6

We continue to pray for all of you as God uses your hands as instruments to His Glory while we walk on this bittersweet journey together. 

Neurosurgery

Wade Mueller, MD

Max Krucoff, MD

Kaitlyn Mark, PA-C

Neuro Oncology

Fernando Santos-Pinheiro, MD

Sarah, RN

Megan, RN 

Radiation Oncology

Joseph Bovi, MD

John Longo, MD

Musaddiq Awan, MD

Candice Johnstone, MD

Nancy, RN 

Amy, RN

Katie E, RT

Kara B, RT

Natalie M, RT

Vicki V, RT

Therapy

Kim G, ST

Katie S, PT

Dawn N, OT

Pharmacist

Stephanie S.

Social Work

Jacqueline Grams

Aesthetic Wellness Coordinator at Small Stones

Luanne M

Greeter at the West Bend Cancer Center

James 

The many others who we failed to mention, or have not yet personally met.

Thank you!

Dr Max Krucoff, MD (left)

Kaitlyn Mark, PA-C

Dt Fernando Santos-Pinheiro, MD

Dr John Longo, MD

Luanna M, AWC at Small Stones West Bend

Kara B, Natalie M, and Vicki V, Radiation Therapists

Katie E, Radiation Therapist

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

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

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