May the Force Be With You

We have been infected.  The Star Wars bug has overtaken the Davidson Family's immune system and is firmly in control.  Andrew, who just turned three, wanted a Star Wars birthday party.  Some small children are comforted by cuddly stuffed animals, not Andrew, he is lulled to sleep by his "double red" lightsaber.  Our upcoming Halloween will also be infected by Star Wars, so I see no cure in sight.

My week in Rochester, where I went through more testing and lung radiation, felt like I Ieft earth and went to a different Galaxy.   The radiation machine's goal was to "blow up" the large tumor in my left lung, hopefully clearing a pathway for my infection, and stopping Miss Mellie's handiwork from getting bigger.  I usually started early in the morning, approaching the radiation mothership already exhausted, nausea overtaking my stomach, and vertigo making me feel like I was walking in a moving space ship. 

After getting called into the treatment room, I crawled in a custom made body cast of sorts, my hands were above my head and then the techs wrapped me in an industrial plastic wrap, after which they literally hooked up a large vacuum and vacuum packed me to a table, all with the goal of keeping me perfectly still.  I truly looked like a character from Star Wars.  They didn't want me to move one little inch, one little centimeter, they didn't want me to move at all; the machines were calibrated to the nearest millimeter by lasers that looked like glowing tattoos projected on my body.  It wasn't just during the radiation I couldn't move, it was also during the CAT scans and all the time in between.  I learned this the hard way, when on the first day I moved between the scans (I could tell when they were scanning because of the bright red light) and the techs patiently came in and explained to me that I absolutely must be still from the moment they left the room, until they reentered, which usually lasted about 45 minutes.  I tried to explain that I was having a shoulder spasm and didn't they know how hard it was to hold perfectly still while a horse named Charlie was rearing in your shoulder? They patiently and firmly countered that didn't I, Ms. Davidson, know how close the tumor was to my heart and if I couldn't hold still they would have to put me under general anesthesia?  So, I learned to endure and hold still.

Tears fell from the corners of my eyes, rolled past my temples and landed in my ears, as the pain in my shoulder intensified day by day, but I held my vacuum packed pose.  I prayed to God pleading for strength, I pretended I was a Jedi Knight focusing on the Force to hold still, and I also played the Gratitude Game, trying to take my mind off the pain and focus on my many blessings.   By day three, as a result of inflammation from radiation, my left shoulder decided to torture me as well.

Absent the intense pain in my shoulders, the cancer killing radiation entered my body painlessly and silently; personally I was in a time warp, for me the seconds felt like minutes and the minutes slowed to weeks while I was alone in the treatment room, I felt like I aged a year after each treatment.   I will get another scan in a few weeks to see if the radiation destroyed enough of Miss Mellie in my lung so the ever present pneumonia and my collapsed lung can be healed.

I came back each day to the waiting room after finishing radiation to my brother Mike and my mom greeting me, loving me and helping me, sacrificing their time so they could be with me in Rochester.  Besides radiation, doctor visits, and more testing, we three musketeers were able to go for a drive looking at the turn of the century architecture and we went for a walk on a beautiful fall morning, when the air was crisp and clear and the leaves crunched beneath our feet.  The juxtaposition of my confinement in modern machines and the freeing feeling of nature made me appreciate both more.  The man made machines were helping my body and God's creations fed my spirit.

Friday was the best day of the week, not only was I finished with radiation, but my family came to Rochester to see me.  Grace, who wants to be a doctor, begged and pleaded to come and see what it was like to be radiated.  The doctor said she could see me be prepped for my radiation journey, but then she would obviously have to leave before the radiation beams assaulted my body. (Ruth, William, Bill and my mother-in-law also joined her.)  As a surprise, the staff made Grace a doctor's badge and gave her a tour, explaining every gadget and gizmo, answering all her questions.  The Mayo staff were so kind and I am grateful for their service to me and my family.

On the wall in the radiation waiting room is a plaque with a bell.  The plaque explains that after you finish your treatment, you ring the bell, celebrating your journey.  My kids helped me ring the bell and the typically somber waiting room erupted into applause, bringing tears to my eyes.  I finished my course and I hope I never have to take that path again, but if I do, I know I can.  I continue to learn to "Be still, and know that [He is] God."


Andrew's birthday party

Me getting prepped for radiation treatment. 

Grace learning about machine.

 Ringing bell after treatment

Family at Mayo Clinic

We went to Minneapolis for the weekend after I finished treatment. I felt pretty beat up, so I spent most of the time just being lazy. The kids went to a NBA Timberwolves game, swimming, and to Mall of America. I did go out, with my new mechanical friend. It felt so good being a normal family. We had a great time and we were able to spend time with some good friends as well, which was a real treat. 

Three musketeers selfie 

Gratitude Game

As I laid on my bed, I tried to muster up the emotional and physical willpower to pack my suitcase. I felt like a two year-old who wanted to throw a tantrum and scream, "I don't want to go!  You can't make me!"  I didn't want to spend another week away from my family, being poked, prodded and experimented on. I pulled the covers over my head and hid from myself, but I didn't go away. 

I forced myself to grow up and I slowly slung my feet to the floor, head spinning and vertigo upset.  I put pretty much the same clothes in the suitcase from last week, freshly washed by a loving friend, sitting there neatly folded on the floor.  As I packed Sammy came in and wanted to help me. He opened my sock drawer, pulled out a pair of red fuzzy gripper socks, held them up and said, "Mom, you have to take these, they look so nice on you!"  I hadn't worn them for over a year, so I assume he likes me in the color red? I promised him I would wear them. 

Sitting on the hospital bed being prepped for Gamma Knife, the nurse questioned my red fuzzy socks, telling me she preferred if I wear the hospital issued socks, but I proudly showed her that my socks too had grippers on the bottom so I was in no risk of falling. She relented.  I sat on the bed, terrified of the pins that would soon be screwed into my skull while I was awake.  I thought, "What a messed up business this all is."  The doctors and nurses were telling me how grateful I should be because I was a good candidate for Gamma Knife, instead of having to have brain surgery on the tumor in my front lobe. Yet, I couldn't feel the gratitude. I wanted to, but I was too afraid.   Although, looking at my fuzzy red socks made me think of Sammy and my other precious children, which helped make me feel a bit more brave. 

It turns out the anticipation and aftermath of getting a Halo, as it is called, was worse than the actual procedure.  While they where numbing my scalp with local anestetic, it felt like my head was being stung over and over by a swarm of angry bees. They gave me some happy medicine to help with the anxiety, but the pain was intense. I couldn't feel the screws going in, but there was lots of pressure. After it was on, I was able to regroup and go to a place of gratitude. 

While I am in the bowels of MRI and radiation machines, I feel like I am being swalllowed by a robot, so I distract myself by playing what I call the Gratitude Game. I have a conversation with myself and with God about all my blessings and the many things I am grateful for: modern medicine, my faith and belief in God, pain medication, my husband who massages my feet, friends and family, whom I list by name and think of them each individually, health insurance, and my game continues until the machine decides he is done with me and pushes me out.  

Unfortunately, while I was distracting myself inside the machine, the doctors found another brain tumor which they needed to treat. Miss Mellie, as we call my melanoma, had been a very bad girl. I think she needs to go to timeout. Who does she think she is giving me another brain tumor in the two short weeks since my last scan, even if it was a small one?  She is no friend of mine. 

The day after the procedure I noticed, despite the fact that the medicine had worn off, I couldn't feel the top of my head. My scalp was numb, but it felt like swarms of spiders would randomly shoot and scury across the top; creepy, must be a side effect in honor of Halloween.

Also, I could hardly put my thoughts  together without stuttering or pausing.  I was searching for words, looking around inside my head, but I found only blank slates, emptiness.  I cried, frustrated.  I couldn't express myself, and when I did, it was halting.  When telling me about the side effects, they never mentioned frozen thoughts and scalp. I called the nurse and she told me, it rarely happens, but it is nothing to worry about. My speech has come back, but I suffered nerve damage when they put the screws in and they will take time to repair themselves. 

Despite the bad news of the new brain tumor, I got good news about my lung radiation plan and I haven't had any severe side effects from my first dose of the immunology drug Keytruda. (Which costs a small fortune of about $13,000 per single dose.)  Normally, I would have to set up shop in Rochester for seven weeks, getting radiation five days days a week. The thought of me being here until almost Christmas, puts me into a tizzy. If that were my treatment plan, they might make me the pych ward's newest patient.  Luckily, they are going to give me the same amount of radiation in a shorter time, instead of doing it in thirty-five treatments, I only have to have five tumor killing doses lasting a week!!! Did I really just write I am excited I only have to have five doses of super powerful radiation, yup, I did. I am so grateful. 

The Mayo Clinic: a patient's musings

As I pull into Rochester, Minnesota, for the third week in a row, I feel a little less disoriented than I did the first time, I've been here before and I recognize many of the stores and landmarks coming into town: the local feed store advertising livestock food, the John Deere dealer selling his famous green and yellow tractors, the Walgreens corner store, and the tall, imposing Mayo buildings blocks down the road. Although I am more comfortable here because I know my way around, I still have a pit in my stomach knowing why I am here, away from my family whom my heart aches to be near.  I am in Rochester this week for my first chemotherapy infusion, to visit a slew of doctors and to have Gamma Knife brain radiation.

The Mayo Clinic is an interesting place.  It seems like someone teleported some of New York City and dropped it right in the middle of a small, midwestern town.  Inside those big city blocks, you have marble clad sky scrappers, towering steel and reflective glass, quaint churches, trendy restaurants and, of course, Starbucks.  Most of the buildings are connected by skyways, to protect the people from the freezing Minnesota winters with biting winds. There are underground tunnels, called the "subway," also connecting the hospitals, offices, hotels, restaurants and shopping malls.  It is a city in a city committed to healing the sick.

I typically visit the Gonda building on the Mayo Clinic campus. The main hall is imposing and majestic, high ceilings with marble and travertine clad floors and walls, the ceiling is accented with Dale Chihuly art glass, sculptures suspended from the walls, and my personal favorite is the outdoor terraced gardens.  I walk through such beauty, hoping to find healing on the tenth floor, oncology. You step off the elevator to a breathtaking view of Rochester, tall windows framing the beauty of the world around you.

When I go to check into the doctors, the waiting room feels like a resort hotel check in desk, complete with wood paneling and nice furniture. The diversity of patrons and languages makes me wonder if I am actually sitting in London Heathrow waiting for my flight, rather than in Rochester, Minnesota being treated for cancer.  Last week while waiting to see my oncologist I "spoke" with a woman from Saudi Arabia through my phone, as we showed each other our children whom we longed to be with; we both have four year-old boys.  She was there with her sister and husband.  Me with my sister and mom.  I try to communicate  an American hello with my eyes and a warm smile to the many women I see in a full length black burkas.  There are always dignitaries of some sort being treated here, the Dali Lama was here for one of my weeks, but unfortunately I didn't see him or else I would have asked for his blessing.  Although, I did speak with the body guards protecting the President of Indonesia.  I asked one of the nurses how they communicate with so many people in so many different languages.  She told me many of the patients have personal interpreters, or the Mayo Clinic has a phone number they call and they speak to an interpreter over the phone.  Mayo is apparently in need of foreign language speakers, if any of you need a job!  :)

And so, in this place of physical beauty, I seek healing.  I seek a miracle.  I seek strength to endure and overcome. 

Mayo – Voyage Two

Posted by Bill

Allyson returned late Thursday night from another long week of diagnostic tests, further consultations, and a modified treatment plan.  “Trip Two” to the Mayo was much harder to go on and she had  hard time leaving the family.  My sincere thanks to Omi (Allyson’s Mom) and Sonja (Allyson’s Sister) for meeting Allyson in Rochester and for accompanying her to her appointments this week.  I stayed home with our children and we welcomed Uncle Brad – or Mr. Brad if you’re Andrew - on Tuesday.  We are grateful my brother Brad could come to help this week in Iowa.

The week was rather dynamic with a mixture of both good and bad news and a new treatment plan for Allyson. The good news is after an examination by the ear, nose and throat doctor, they decided no further action would be taken with the tissue in the tonsil.  The tonsil will remain in an observation mode for now.  They didn't find any ulcerated cancer and will follow the watch and wait mode while Allyson deals with the more serious issues of lung and brain. The other piece of good news is that Allyson's colon is free of tumors and the uptake on the PET scan was inflammation, not cancer.   

So the focus for now is on the lung and the brain.   The bad news is that the pulmonolgist, after consulting with the top guy at Mayo, determined because of the location and size of the tumor it is anatomically impossible for them to put a stint in her lung and drain the infection from the "obstructive" pneumonia.  Despite her being on high doses of antibiotics, the infection is too big to be tackled by antibiotics alone.  So, that means that Allyson will have to start radiation with pneumonia, which is higher risk because of the impact radiation has on an already weakened immune system.   Additionally,  they are going to start her on immunology drugs on Monday, rather than waiting until after radiation, because of the infection in her lungs.  She is going to take a new drug called Keytruda.  https://www.keytruda.com/   She will also be enrolled in a clinical study while she is on this drug.   Next week they will determine a plan for lung radiation, hoping they can shrink the tumor enough so her lung can drain the infection.  She is also having brain radiation on Wednesday. After the brain procedure “Gamma Knife," we believe the radiation on the lung tumor will start – not sure on details or timing yet.

One link I found helpful on the brain procedure:

http://www.mayoclinic.org/tests-procedures/stereotactic-radiosurgery/home/ovc-20130212

Sonja returned to Missouri on Thursday and Omi came with Allyson to Bettendorf to five very excited grandchildren.   Allyson will hopefully have a good weekend before she has to return to Mayo on Monday.  She dreads these Mayo trips, leaving her kids and suffering from many pokes and prods, which is causing her some anxiety.  

Our many thanks to all who have helped and are willing to help.  We certainly are very appreciative of the many things everyone is doing to support our family. We feel your strength from your faith and prayers.  We continue to remain hopeful.  

Roller Coasters and Simple Pleasures

I have gone from the Twilight Zone to riding a roller coaster. I feel like I am being whipped and jolted, thrown to head dizzing highs and then experience stomach dropping lows. My feelings range from anger, gratitude, despair, hope and everything in between. I don't know how to do this.  

I was so grateful I was able to be home this past weekend with my family, to listen to our church leaders in General Conference.  I felt strengthened to endure this trial ahead, and endure it the way God wants me to, to learn what I need to learn.  I am grateful for family and friends, so many people serving our family.  Thank you. A dear friend gave me a sign quoting the scripture, "Be still and know that I am God."  I am trying to be still.  

I am so grateful for yesterday. It was "normal."  It is the first day in over a month that I was well enough to get my kids off to school. I wanted to do it alone before I went back to the Mayo Clinic. 

As I was driving Andrew to school I felt free for just a moment, enjoying the dialogue between a three and a four year old about fire trucks.  I felt so blessed that I could be there at that moment being a mother.  Just like when I held Sam in the emergency room a week earlier, with a split head, just grateful I could be there to hold him when he needed me. 

After I got back from dropping off Andrew at preschool, Sammy really wanted to bake with me. He loves to help me in the kitchen. I was feeling exhausted from the morning, so after a small rest Sam and I made banana bread together.  He was so proud to share his banana bread with his siblings.  

Later, as I layed down, worn out from simply getting my kids off to school and making banana bread, I was angry that such simple things exhausted me, yet grateful I could be there with them. 

I am not there with them now. It breaks my heart when Bill tells me Sammy woke up at 2:00 am wanting me. It broke my heart as I left yesterday afternoon for Mayo, Andrew with his big, brown eyes, questioned me,"You sick Mommy? You sick?"  And yet, my broken heart is mended when I think of the simple pleasures and joys I had yesterday, taking my kids to school and making banana bread. 

"Be still and know that I am God."

The Mayo Clinic Maiden Voyage

Posted by Bill:

The Mayo Clinic – Chapter One

We arrived home from Mayo just before 11pm last night after two days of tests and a comprehensive consultation. Here is a brief summary of the last two days and what the next steps will be.

We arrived in Rochester after leaving our children in capable hands and left for the ~250 mile venture to Rochester. Interestingly, the fastest trail to Rochester from our home in Bettendorf is through Waterloo, Iowa (our home from October 2005-May 2008) so it felt like we were passing familiar terrain for a good portion of our trip to Minnesota. We arrived shortly after midnight early on Wednesday morning. We made the venture to the Mayo campus to find this world class facility in the middle of a small very typical mid-western town. This town of ~100,000 was originally a stop point between two river cities (Twin Cities and Dubuque, IA) and as the result of a Tornado in 1883, William Mayo, built onto a family medical practice to establish a hospital to care for those who were injured in that storm. Since then the Mayo has developed into a world class medical facility. It is the first and largest integrated nonprofit medical group practice in the world, employing more than 3,800 physicians and scientists and 50,900 allied health staff. It spends over $500 million a year on research. (Wiki – Mayo Clinic)

Day one was test day - bloodwork, MRI, consultation. I have never experienced an MRI before so I asked if I could go with Allyson so I could meet the GE Machine that would help with the procedure. I also learned that the machine is not a quiet, serene experience. I found the following clip to better understand Allyson’s explanation of the adventure, except her head was in a cage to hold it still.
https://www.youtube.com/watch?v=8oI9YnhPNcQ

We found a quant place for an early dinner and waited patiently for day two.

Day Two started with a PET Scan, (positron emission tomography scan). It is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body – in Allyson’s case cancer tissue. After the PET Scan we met with Dr. Villasboas and Dr Markcovic to discuss the situation. After a comprehensive review of Allyson’s medical history we discussed the cancer. We learned that the PET scan showed the cancer spreading to her brain, her left tonsil, and some tissue adjacent to her diaphragm – in addition to the tumor that we already knew about in her left lung. The tumor in the left lung was applying pressure on critical air passage that created infection and brought the pneumonia (Dr called it obstructive pneumonia). We were told if the tumor was shifted even slightly it may have continued to go completely undetected. So, in this case pneumonia brought the cancer diagnostics so we are grateful. The treatment plan will come in three phases.

Phase 1: They can’t treat the cancer until they get rid of the infection. So, Allyson is on heavy antibiotics and they will do a procedure to drain her lung of infection next week. They will also do a small procedure on her tonsil.

Phase 2: Radiation. They will treat the different tumors will different kinds of radiation. We don’t know all the details of this now, but will learn more in two weeks when we meet with the neurosurgeon and the radiologist oncologist.

Phase 3: Drugs. Chemotherapy will not help Allyson, so she will have a new type of drug, immunology. It is basically where they turn your own immune system into Superman and try to kill the cancer that way. These are all new drugs and some patients are having great results, living longer than two years, but they don’t really know how Allyson will respond. They are doing further testing on the biopsy to see which if any of these drugs might work. We are hopeful that Allyson will respond to these new drugs, so that is where we need your faith and prayers. The melanoma research field is well funded and a lot of exciting things are happening, so that is all good news for us.

We are both saddened and encouraged after going to Mayo as we try to figure out what this all means for our family. We realized that this is going to be a long marathon.  Thank you for your continued faith, prayers and service.