Graduation Day: October 17, 2021

Marnie Measom Spencer finished her mortal lessons and passed peacefully to her next classes on a beautiful Sunday afternoon. 

Marnie was keenly aware that she might not be able to finish telling the rest of her story about living with cancer and receiving continuous treatment for over thirteen years after it returned in 2008. She wanted to continue to chronicle the effects of both disease and treatment on her body, as well as the refining impact it had on her spiritual development. She left behind a few completed essays, stories, and memories, and many written and spoken testimonies of her evolving trust in God's love, plan, and timing.

My hope is to add to this website periodically, to complete what she began, using her words whenever possible, as a tribute to her and to help fulfill her wish to touch as many people as she could, to build hope, courage, and faith so they too might learn valuable lessons from their life's "hard teachers."

-- Wes Spencer

One of my favorite pictures, taken one day before Marnie started chemotherapy in 2004.

You can read Marnie's obituary, view a slideshow of photos or watch her funeral service here: https://whitepinefunerals.com/obituaries/marnie-spencer-1

Marnie loved to collect stories. You can read and share memories on her memorialized Facebook page or leave memories or share a tribute here: https://my.gather.app/remember/marnie-spencer

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Back to School - For More Lessons

The book Lessons From a Hard Teacher ends on a tentative but hopeful note. That's just how I felt when I left my chemo behind in June 2006, and I enjoyed – and appreciated – my good health. 

One year later, in the summer of 2007, I noticed some unusual symptoms. I became intensely and obsessively thirsty. I noticed that I began walking in a zigzag pattern. I gained weight then rapidly lost a lot of weight. One day, when I was getting ready for church and putting makeup on, I noticed that my mouth was a little asymmetrical.

My doctor told me I had Bell's palsy. He said it was temporary and would gradually improve. He expected it to be gone in month or two.

But instead of getting better, it got worse.

(From my husband's journal,  March 2, 2008)

“Yesterday I baptized and confirmed Elisabeth a member of the Church of Jesus Christ of Latter-day Saints.  I had fasted from Friday to be prepared mentally and spiritually for the ordinances . . . I also had in mind to ask for a blessing on Marnie – that she would recover health and strength and that we would continue to be blessed in receiving inspired treatment for her condition.”  

To see more about this experience click → here.

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And Life Goes On . . .

My facial paralysis got worse, a persistent buzzing in my right ear became louder, and I became more exhausted. One morning I got out of bed and was so tired I went back to bed an hour later. For weeks, I could hardly leave my bed. People kept waking me up, trying to talk to me, and I just kept falling back to sleep. My husband tried to feed me, but I didn’t want anything. I could drink water, but I couldn't eat solid food.

After a couple of weeks, my husband Wes started to give me sweetened drinks, which put a little weight on me and gave me some energy. After several days I was able to eat a little.

Wes took me to the doctor. Clearly something was wrong, but no one knew what it was. Besides my family doctor, I saw an endocrinologist, a gynecologist, an oncologist, and a chiropractor. Everyone ran tests – blood tests, x-rays, an MRI – but found no explanation for my symptoms.

Through a series of tender mercies, I was led to an Ear, Nose and Throat doctor who looked at my MRI, asked me some questions, and told me it looked like I might have an acoustic neuroma. Because he was unsure, he made an appointment for me to meet with an ENT/neurology specialist in Salt Lake.

(From my husband's journal March 8, 2008):

"Marnie has been ill now for two months and has had the problems with her face and hearing and balance for a few more months than that. We now know that she has an acoustic neuroma, a benign tumor that is pinching off the 7th and 8th cranial nerves. We don’t know what is causing her total loss of appetite and fatigue. . . We have not felt that this illness is due to cancer (although that is what some of the doctors believe, except her oncologist). We don’t feel that the disease has been explained or treated at all. Perhaps we should ask for treatment of the symptoms while they are hunting for their cause."

"Thou shalt ask, and it shall be revealed unto you in mine own due time."  (D&C 42:62)

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A Long Drive, a Long Wait, Some News, and Peaceful Rest

On March 11, 2008, Wes and I drove to the University of Utah Medical Center in Salt Lake City. I remember sitting in the waiting room for what seemed like a long time. Finally, I heard someone call my name, and we were led in to the doctor's office, where we sat down to wait for the doctor. We waited a long time.

When the doctor came in he greeted us kindly and began asking me questions as he studied my MRI images. After a few minutes, he told us that he needed to consult with some of his colleagues in the building. He left, and he was gone for a long time.

When at last the doctor returned to his office, he told us that the medical specialists he had spoken to about my case had been unified in their decision: the thing that was growing in my head was not a benign acoustic neuroma, but a small cancerous tumor. I would need to have surgery to remove it.

We talked about scheduling and insurance, and we left, hand in hand, thoughts swirling around in our minds.

We were in the parking lot, heading for our car, when I realized how exhausted I was. “Wes,” I said, “I don't think I can make it through the drive home. I'm so tired.”

Wes was sympathetic but unsure how to help me. “But what can we do?”

I thought for a minute before I asked Wes, “Doesn't your grandmother live near here? Do you think she would let me lie down somewhere for a little while?”

Wes was quite sure his grandmother would welcome us and make me comfortable in any way she could.

We drove to her small home, and she greeted us warmly. After a few minutes of pleasant conversation, I gave Wes a meaningful look, and he told his grandmother that I was very tired and needed to rest. She led me to a tidy guest room, and I moved toward the bed to lie down. She covered me with a soft blanket, and I fell asleep almost immediately.

Phyllis Greene Spencer

". . .they shall rest from all their troubles and from all care, and sorrow."  (Alma 40:12)

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I Needed it Out

Because our insurance wouldn't cover surgery at the University of Utah Medical Center, I was scheduled for surgery to have the tumor removed at the Huntsman Cancer Institute on March 28, 2008. When we arrived for my appointment, I was so weak that I couldn't stand up on a scale to be weighed, so they weighed me in bed. I was five-foot-five and weighed 98 pounds.

I was taken in to surgery without delay. Of course, I have no memory of the actual surgery, but I learned later that the tumor had been growing on cranial nerve VII which controls facial movements. The surgeon removed it by drilling through the base of my skull, traveling through the right inner ear, leaving me completely deaf in that ear. This also deprived me of my balance. I had to train with physical therapists to relearn how to walk.

One thing I remember is that after the surgery, the surgeon told me that he had to remove some fat from my body to fill the hole left in my skull. He told me that he had a hard time finding a place on my body that had enough fat to use. I didn't understand this at the time, but later my husband told me they needed to keep my brain from falling out of my head.

After a week of recovery from the surgery, I was scheduled for three weeks of whole-head radiation at the hospital. I was so weak and sick that I could not endure the 90-minute drive to the hospital and back. After the first week, my sister Amber, whose home was much closer to a hospital with a radiation center, invited me to live with her for the next two weeks of my radiation treatments. I was grateful for Amber's kindness and generosity and gladly accepted her offer.

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Burning my Brain

After a week of recovery from the surgery, I was scheduled for three weeks, five days a week, of whole-head radiation treatments. The nearest radiation oncology treatment center was in a hospital an hour away. I was so weak and sick that I could not endure the drive to the hospital and back. Every day I felt worse than the day before. At the end of the first week, I was certain I couldn't go through any more.

At this point, my sister Amber, whose home was much closer to a hospital with a radiation oncology center, invited me to live with her for the next two weeks of my radiation treatments. I was grateful for Amber's kindness and generosity and gladly accepted her offer.

Wes drove me to my sister's house, where I was pampered by Amber and her three-year old son, Eli. Amber took me to the radiation center every day that week, and on Saturday, Wes drove down and brought the kids to visit me. 

               Me with Ben                                            with Hannah and Elisabeth 

(At Amber's house April 2008)

Wes had told me in a phone call earlier that week that Adam was having a really hard time without me. I asked Amber if it would be OK to have him stay with me for the last week of my radiation treatments. She thought it was a fine idea. So when Wes and the six older children left after visiting, Adam who was in kindergarten at the time, stayed behind with me. We were both happier. He snuggled in bed with me and quickly made fast friends with his cousin, Eli. 

Although I was grateful for Amber's care and support and to have Adam with me, brain radiation was an excruciating experience. I could hear brain cells popping and could smell the flesh of my brain burning. When I finally arrived back home after completing the treatments, I was so weak and tired and my brain was so badly damaged that I could not function. I believed that eventually my brain would be healed to some extent, but at the time I was not doing well at all. 

I found that I really knew two things: I could sing the theme song to any television show that aired in the 1960s or 70s – even from shows I didn't remember ever watching. Why couldn't it have been scriptures, or classic poetry, or Shakespeare that issued from my damaged brain? But no, I got: “ Sit right back and hear a tale, a tale of a fateful trip . . .,”  “Come listen to a story 'bout a man named Jed, poor mountaineer barely kept his family fed,” and “Who can turn the world on with her smile, who can take a nothing day, and suddenly make it all seem worthwhile?”

The other thing I knew, when all the worldly things had been swept away was: 

Living the gospel is simple. God tells us what to do, He helps us do it, and if we mess up, He gives us another chance to get it right. 

To learn more about my post-radiation experience (and to see a picture of a really cute boy), read my post "Cheering Words" Click here.

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Permanently Untangled

The radiation treatment to my head did not cause me to lose all my hair, but it thinned it and damaged the oil glands, leaving me with a crown of dry, tangled clumps around my head.

I could not find a solution for this problem. The clumps of hair were so matted and dry that I could not comb them out, even when I soaked them with high-moisture hair conditioner.

Some friends from my book club proposed a plan. They said they would take me to a hair-stylist who had a salon in her home. “She's really good,” one friend said, “and she can cut your hair short. There are a lot of cute short hair cuts now.”

I agreed with her about the cute short hairstyles I'd been seeing, but I told her that they wouldn't work for me. “My face is too masculine. If my hair is short, I'll look like a man.”

She and my other friends rejected my prediction, saying that I'd look good with short hair. I knew they were wrong, but I agreed to try it. My agreement hinged on one condition, though: If the haircut didn't turn out well, the stylist would shave my head.

We went to the stylist's house and entered through her basement door, where the salon was. The hair-stylist introduced herself. Her name was Laura, and I knew within minutes that she was a very nice person.

Laura put me in a chair, and hung a dark drapery over the mirror in front of me, blocking my view and the view of my friends seated behind me. Then she began her work.

I heard comments from my friends as Laura snipped at my hair. “Oh, it looks really cute from the back!” they gushed.

When the snipping was finished, Laura turned me around so my friends could see the finished product. The disappointment was palpable. 

“Well, okay, I guess we can shave your head now.” 

The skilled stylist picked up her electric clippers and made me bald.

My hair grew back after that, but it didn't grow very well. There were places on my scalp where no hair grew and places where my hair grew in strange ways, some strands longer and curlier, and some short and wiry.

But when I began chemotherapy again, I lost my hair, so it didn't matter for long. 

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Septic

When I completed chemotherapy in 2006, I had the surgically implanted port on the right side of my chest removed. Because I was going to start chemotherapy again, I needed another port implanted. At the end of April 2008, my surgeon placed a new port on the left side of my chest. 

On May 14, 2008, I met with Dr. Ben-Jacob start chemotherapy again. Five days later, I made an appointment with my family doctor because I suspected I had a urinary tract infection. After some lab tests, the doctor said he would call me back and let me know the results. About an hour later, he called and said, “Get to the hospital. Don't pack a bag or wait for your kids to get home from school. I have a room waiting for you, and you need to get there quickly.”

At the hospital they immediately started me on an antibiotic IV. I felt fine – not sick at all. My doctor came into the room about an hour later and said, “I need to be really honest with you. You’re very sick. The infection has spread into your blood and is moving throughout your body. There is a very good chance that you will not live through the night. Now, with your permission, I'm going to call your husband and tell him what I just told you.” After the doctor spoke to Wes, I took the phone from him. I told Wes to come to the hospital and bring our kids “because it's Monday,” I said, “and we're going to have Family Home Evening.”

Both our bishop and home teacher came into the room and gave me a blessing, conveying words of comfort and the truth of the Plan of Salvation. I found some comfort in these words.

It wasn't long before my family of nine squeezed into that little room, and we had a sweet, touching Family Home Evening. I felt the Spirit strongly as I bore my testimony to my children. We read from 3 Nephi about the Lord’s visit to the Nephites, and I reminded the children that the Lord can heal any affliction, and that He could heal me if that would be best for us.

“Have ye any that are sick among you? Bring them hither. Have ye any that are lame, or blind, or halt, or maimed, or leprous, or that are withered, or that are deaf, or that are afflicted in any manner? Bring them hither and I will heal them” (3 Nephi 17:7)

I gave everyone a hug and told them all I loved them before they left to go home and get some sleep.

Having someone tell you that in perhaps only a few hours you will be gone really puts things into perspective. I didn’t sleep that night. I spent a lot of time praying. That was truly one of the most spiritual nights of my life. I had sacred experiences that are very dear to me still.

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In its weak condition, my body could not handle the strain of the toxic chemicals that were meant to fight the cancer. I was constantly sick and had to go to the hospital several times. After about a month of this, Dr. Ben-Jacob said, “I'm not going to give you any more chemotherapy. It is hurting you more than it is helping you. An infection could kill you.” He told me he was going to put me back on Herceptin, the drug that I had in my initial treatment that blocks new tumors from forming and has many fewer side effects.

Wasting Away

Another problem I dealt with after the surgery and radiation was regaining the weight I had lost during my illness. I felt that I was eating enough, but the calories weren't sticking. I spoke to a doctor who specialized in nutrition for cancer patients, and he suggested that I might have “Wasting Syndrome” a condition that causes severe muscle wasting, weakness, fatigue, and loss of appetite.

I eventually gained a little weight, but it came slowly. It was frustrating for me to be so scrawny. I thought that I might be the only woman in America who wished she weighed as much as it said on her driver's license.

One day, my friend Jane gave me a ride to a doctor's appointment. On the way home, she asked me what my favorite candy bar was. 

“Snickers Almond,” I answered. I thought she might bring me a candy bar. 

Instead, she brought me a whole case of Snickers Almond candy bars. I was so surprised, I could not speak. “Eat them all,” Jane said, “and when you run out, I'll bring you another case.” 

I ate at least one, sometimes more, every day. And I started to put some weight back on. This high-calorie diet seemed to break the cycle of “Wasting Syndrome,” and from then on, I could gain weight normally.

“Then shall the righteous answer him, saying, Lord, when saw we thee an hungered, and fed thee?” (Matthew 25:37)

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Eye Wide Open

Because of the paralysis in my face, I could not close my right eye, which caused it to become dried out and potentially damaged. A doctor tried to solve this problem by sewing a one-gram piece of gold into the layers of skin in my upper eyelid. This helped to close the eye for a while, but it wasn't long before it was popping open again. The doctor replaced the weight with a two-gram weight. Again, this worked for a while, but I guess my eyes were contrary and stubborn (which means they're a lot like me). The eyelid stopped closing, and it wasn't long before the weight started to cut through the skin of my eyelid, dangling rather ominously from my eye.

At this point, I went to an eye doctor I hadn't seen before, and he told me the best way to solve the problem was to make the eye opening smaller by sewing together the corners of the eyelids. This plan frightened me a bit, and I was apprehensive at first that I might not be able to see out of the eye, but the doctor and my friend Arrin, who was with me, convinced me that it was the best thing to do. So I agreed to the plan, and after that the eye was easier to close. 

"For the LORD hath poured out upon you the spirit of deep sleep, and hath closed your eyes . . ."

(Isaiah 29:10)

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Visibly Flawed

Marnie hoped that removal of the tumor from her facial nerve would allow her to regain movement of her facial muscles. Dr. Shelton told us that after removing the tumor, he would take a long, less important nerve from her neck and splice it into the cut-out section of the diseased facial nerve. He said that there was a 50-50 chance that the graft would take. But he warned us that the growth would be very slow - imperceptible - and we would not know for months if it was working. 

Marnie was hopeful. She created her own exercises to encourage the nerve to grow, trying to raise an eyebrow, lift the corner of her mouth, do a full-on cheesy smile, but we couldn’t see any effect. The right side of her face remained frozen, mask-like. One day she called me to come look, excited, convinced that she had seen slight movement in the corner of her mouth. I regretfully told her that I couldn’t see it. Frustrated, she told me that I was just being negative. She was certain something had changed. But she couldn’t make it happen again. 

It was common during hospitalizations for an attending doctor to request evaluation of her ability to swallow (1). The loss of the facial nerve caused difficulty chewing and swallowing because her tongue and the inside of her mouth and lips as well the salivary glands on the ride side did not work. She was at risk for aspirating food or fluids which could result in pneumonia. When she was very ill, general weakness or a compromised mental state magnified the problem.

The doctors did not want her to develop any additional problems, so she endured repeated swallow testing. Most of the time she was fine and found the procedure annoying and unnecessary, but occasionally, she failed the test and had to endure temporary dietary and fluid restrictions. 

During one hospitalization the speech therapist who evaluated her told us of a colleague in Salt Lake who specialized in rehabilitation of facial paralysis. She said that this practitioner (I’ll call her Susan) had helped many people regain tone and function of their facial muscles. We called right away to get an appointment, but it was weeks away. As we impatiently waited, Marnie continued to try to cajole the muscles of her face into moving. 

Marnie was nervous but cautiously optimistic on the day of the appointment. We arrived early and filled out the necessary paperwork to explain the origin of the problem and her current functional limitations. Susan asked some questions and explained that she would be attaching electrodes to Marnie’s face and delivering an electric shock. This would amplify whatever nerve activity was present and hopefully cause the muscles in her face to be activated. If the nerve was working, we would see the muscles of her face contract. The electrodes could also detect if there was any activity of the nerve and muscles that couldn’t be detected just by looking at her face. Susan said the procedure would be painful, but it was the only way to tell if the facial nerve graft was working. Marnie consented to the procedure. 

Susan delivered the first shock and Marnie winced in pain (2). Nothing. No activity. She tried the next level, which increased the pain. Again, nothing. She proceeded systematically to increase the level of electricity. Tears came to Marnie’s eyes and she trembled with each shock (3). Susan apologized repeatedly but continued the procedure, determined to find some neuronal activity. Finally, she stopped. She looked at compassionately at Marnie and in a soft voice said, “I’m sorry. There’s nothing there. I don’t think the nerve graft worked.” Marnie was in full tears from the pain. Susan hugged her and said, “I’m so sorry, sweetie, there’s nothing I can do. I really wish I could.” Marnie nodded and thanked her. 

We gathered our coats and Marnie’s purse and left the office. The appointment had taken all morning, but Marnie didn’t feel like going straight home. We ate lunch at an Indian restaurant and then went to Deseret Industries so she could distract herself by hunting for bargain household items and potential gifts for the children. We didn’t talk about it.

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Afterward, I remember tallying this experience as yet another irretrievable loss of a part of her body, another insidious casualty of the cancer. She said later that this was probably the most difficult one. She accepted the loss of her breast, her hair, and even her vision and hearing, but she had really hoped and repeatedly prayed that she would get back some of her facial movement. She wanted to talk normally, to sing, to smile, to whistle, to kiss me, to eat and drink without spilling on herself. Not having the hoped-for healing was deeply discouraging. She didn’t want to stand out any longer; she didn't want to draw attention to herself in that way.

Marnie told me about a wedding shower she attended where she saw a woman who had moved out of our ward years earlier and did not know about her illness. The woman, after staring at her face with uncertainty for a while, finally recognized her and blurted out, “Marnie! Something terrible has happened to you!” She awkwardly explained the story of her cancer diagnosis, recurrence, and ongoing treatment with its inherent complications.

In time, Marnie learned to appreciate her permanent disfigurement as an outward sign of her illness but also the miraculous blessings she had received. She would often say that everyone has something broken, something seriously wrong or painful in their life, and she felt privileged that her trials and imperfections were obvious to others. 

The visibility of Marnie’s impairment allowed others to see her need and serve her. Some people would talk to her slowly or become intentionally patient with her in the store. On more than one occasion in the temple, a sister sitting next to her would offer her assistance when Marnie struggled and needed help. Instead of feeling embarrassed or self-conscious, Marnie simply expressed gratitude. And often, the woman would say that she felt blessed by the opportunity to serve Marnie, or that the experience brought needed perspective and gratitude for being in the temple at that specific time. 

Whenever a child stared at her or hid from her, she spoke directly to them and said, “I look funny, don’t I?” The child would typically nod their head, and the parent would make an excuse for the child’s behavior, try to correct the child, and tell Marnie that she looked beautiful. Marnie would explain to the child that she had had something bad inside her head that made her face look funny but the doctors had taken it out but it didn’t hurt, and now she was fine. The child would usually nod then smile or laugh as Marnie squinched up the working side of her face to make comical expressions. Sometimes, fear abated, the child would tell her about some sickness or disability they or a family member had (4). 

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I confess that I sometimes struggled when looking at her crooked face. Too often when talking with her, I focused on the glaring, mask-like expressionless side that sometimes seemed to me to look accusatory or indifferent, which caused me to misread her intentions and feelings. I had to force myself to look at the left side of her face to see the sadness, compassion, serenity, joy, or kindness being expressed. Sometimes even now when looking at photos of her, I deliberately cover the left (her right) side of her face, so I can see the smiling part better and imagine what the full smile would look like.

I think by nature our attention is drawn to seeing what is new or unusual or out of place. It was too easy to look at Marnie and see only disfigurement and loss, a visible reminder of our painful trials, and I too often failed to see the blessing, the grace, the shining beauty in her that was equally present, as she increasingly reflected the countenance of Jesus Christ. 

I am reminded of Isaiah’s prophecy about the Messiah: “he hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him” (Isaiah 53:2). How ironic it is that the creator of all that is beautiful would be overlooked as plain or undesirable. What were people looking for? How did they look at him? Would I have recognized him?

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Life often presents us with ambiguity, a combination of good and bad, blessings and hardship. What do we see when we look at others? Do we see their weakness and disfigurement, someone to avoid? Do we see them as a project, something to mark on a “good works” checklist? Do we see our brothers and sisters? Do we see God? 

I wonder if the way we see others is a reflection of who we are, where our hearts are in the moment. If so, I hope mine can become like Marnie’s, more like Jesus. I hope my heart can change like hers so I can see others need and gifts more clearly and “be filled with this love, which he hath bestowed upon all who are true followers of his Son, Jesus Christ . . . that when he shall appear we shall be like him, for we shall see him as he is; that we may have this hope; that we may be purified even as he is pure. Amen” (Moroni 7:48).

1 - It was also common for the medical team to attribute her facial paralysis to a stroke, and they incorrectly assumed that she had weakness on the whole right side of her body. We had to repeatedly correct that assumption, explaining that the stroke she had in 2002, two years before her cancer diagnosis, was very small and had only transient effects on her speech. 

2 - Many people assume that because she couldn’t move her facial muscles, she had no feeling in her face. The sensory part of the face is controlled by a different nerve that wasn’t affected by the tumor, so she felt everything normally.

3 - Later, Marnie said it was the worst pain she had ever experienced, and she had delivered six of our seven children without an epidural block and two of them without any anesthesia at all. 

4 - For an example, see: https://swanmom.blogspot.com/2013/04/and-little-child-shall-lead-them.html)