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.

Twilight Zone

I feel like I am in the Twilight Zone. I am watching someone else's life, someone else's diagnosis. It can't be me, but it is me. Accepting reality has been a challenge. When the Mayo Clinic examined the biopsy and confirmed the diagnosis, I felt like I was playing tag and I actually got caught, rather than slipping out of the grasp of the seeker.  I was hoping small town Iowa pathologist wasn't competent, got it wrong, but it is Stage IV matastic Melanoma and I have to accept it. 

I haven't been feeling well for months, so long I can't really remember. I know planting my garden this spring felt like work, something highly unusual for me where normally working in the yard is invigorating.  Is it possible for a mother of 5 children not to be exhausted, tired and out of breath?  

About a month ago I got a really bad cough, no other symptoms, but it just wouldn't go away.  I went to the doctor, just a virus.  The next week I got even sicker, this time with a fever and a cough. I was at a church baptism with William and I felt awful and knew something wasn't right. I stopped on the way home, with William playing on my phone in the waiting room, the doctor didn't know what was wrong. It didn't sound like pneumonia, but he decided to do a chest X-ray just to make sure everything was ok.   He came back and informed me I had a tumor the size of a tennis ball in my upper left lung, in addition to pneumonia caused by the blockage. I needed a CAT scan and further testing, thus started my Twighlt filled journey.

As I start, my focus is to seek God's strength, having faith in Him, knowing he is a God of miracles.  I want to align my will with His, learn what He wants me to learn, become who He wants me to become. I want to live, I want to be a mother and raise my children. I want to be a wife, daughter, sister and friend.  All of which is possible, I believe, because of God and the love, faith and prayers from many of you, God's earthy Angels. Thank you for everything everyone is doing to support us during this time. 

I will update this blog as we go through this trial. I so appreciate everyone's notes, emails, texts, etc. but it is difficult to respond to all, so please forgive me. 

FYI:

 Here are the email update messages Bill sent our family during the past week.  

September 21, 2015

I wanted to provide a brief update on the latest with Allyson.  We learned about the biopsy analysis this morning from the needle lung biopsy that was completed last Wednesday.   The Pulmonologist called this morning to tell us that the diagnosis is Melanoma cancer that has metastasized to the lung - so the fact that it is in the lung makes the diagnosis Stage 4 cancer.  The Pulmonologist encouraged us to get to the Mayo Clinic as soon as possible for further diagnostics and to determine a treatment plan.   Fortunately,  Omi's Bishop studied and worked at the Mayo clinic so Bishop Allen introduced us today to a Dr. that is the head of Oncology and Radiology at the Mayo Clinic.  Dr. Foote is a BYU grad and is the Stake President in Rochester, MN and has known the Allen's for years.  Dr. Foote is going to look at Allyson's data and determine who at the Mayo clinic is best qualified to provide guidance on the next steps.  We learned that there is no standard therapy for cancer of this kind but that the Mayo Clinic has a significant number of research options that will be able to provide some options for treatment.  Obviously, we have a lot more to assess before we get to that point but we are so grateful for Bishop Allen for opening a big door at the Mayo so quickly.   We are getting all the records put together to send to Dr Foote's office tomorrow.  The office will need 24 hours to assess and then we can have our initial consultation.  So I am optimistic that we may be able to have that visit even yet this week.  If not this week, it will be early next week.  Allyson still has pneumonia and is continuing on antibiotics for now.

 

We sat down with Ruth, Grace, and William tonightafter Ruth/Grace returned from music to share with them the news.  We told them that it was diagnosed as skin cancer that has moved to the lungs and that we were able to get to see one of the best Dr to determine next steps.  We did not discuss risks or other unknowns at this point.  We encouraged them to be open with feelings and that we would maintain open dialogue as we continue this journey.

 

We are feeling shocked by this news and it still feels surreal and how could this be our special Allyson.  We feel support from our ward and neighborhood and are taking this a day at a time for now.  

 

We appreciate your love and prayers.  I will keep you updated as we get new information.

 

Love

Bill

September 25, 2015

We wanted to update you on the latest with Allyson. We received feedback from the Mayo Clinic today after they reviewed all of Allyson's medical data and learned that we will be going to Rochester on Tuesday night for appointments next week on Wednesday, September 30th and  Thursday, October 1st.   On the 30th, the Mayo will do blood work and an MRI.  On the 1st, they will conduct the PET Scan (http://www.mayoclinic.org/tests-procedures/pet-scan/basics/definition/prc-20014301)  The PET Scan will provide the data points of where cancerous tissue exists outside the lung, and hopefully pinpoint more clearly the original origin in the skin.  Later on the 1st, we will meet with the Dr. that will provide guidance on treatment options and next steps.  The Dr's name is Dr. Svetomir Markovic who is one of the principle Melanoma experts at Mayo.  Allyson found the following video that gives some perspective of Dr. Markovic and his Mayo team.  https://www.youtube.com/watch?v=Uj0FIyt9qzY   The Markovic team is impressive so we feel grateful we are getting some one of the world experts to help us.  We are thankful for Dr Foote (Omi's Bishop's friend) for making this happen.  We are hopeful by this time next week we should have a decent understanding of what the next steps will be and a treatment plan.

 

 We are maintaining an open dialogue at home with our children and so far are feeling strength and peace of mind as we continue to process the surreal shock of this whole situation.  Ruth and Grace have been  "Google-ing" so this has helped drive the conversation.  We are remaining optimistic and hopeful and are maintaining a positive front to our children.  We have maintained our normal busy schedule with the activities of our five children (with lots of help)

 

We are receiving a lot of help and support from neighbors, friends, and Ward members.  Our bishop is going to conduct a Home Teaching, Visiting Teaching Council this Sunday with our HT/VT to coordinate efforts with our Ward family because so many want to help our family.  We feel a lot of love and support and we are truly grateful for so many kind people that are willing to help.

 

John Deere has been very supportive to the Senior levels of the Company for me to take whatever time I need away from work to support our family.  So I have been able to be at home to help and to hopefully ease the pressure for all.  Deere has asked that I maintain leadership for all strategy/finance issues and people issues/decisions and I have delegated all other tasks to my very capable team - so I am grateful for a good team and for my leadership who has been supportive.  I am calling into necessary meetings and my assistant is running traps on all other fronts.  We are in the middle of a year long process to negotiate a new labor agreement with the UAW so that feels pressing but so far we are managing ok on the work front.

 

We are not finalized our planning for next week yet but will update everyone once we have a plan this weekend.

 

Know that we appreciate your prayers of faith, you willingness to help, and know that we will reach out if we need anything.  

 

Please feel free to call me or reply to this email if you have any questions. The Davidson Family has been invited to participate with a Family Fast with the Nemelka's for this Sunday.  I will forward details to call in to start the fast on Saturday.

 

Love,

Bill

The only constant is change....

Ruth, Grace and William in front of their school bus on First Day of School.

Grace in class with her teacher Ms. Davis. She is from N.Y.C.

Ruth excited for school.

Ruth in class.

Daddy, William and Grace at school.

Getting ready to leave for First Day of School.

William running to the bus stop.

William on bus.

I know, I know. I haven’t posted a blog in a very long time. I keep telling myself that 1) no one is reading it anyway and 2) the blog entries all have to be sequential. So, I can’t write about what is going on in our lives until I got caught up on Christmas, Birthday’s, Chinese New Year, End of School, summer travels, etc. Well, I realize I just need to start where I am and try to catch up later or I will never write anything! So here it goes, again…

Change. Glorious Change. While growing up the phrase, “The only constant is change,” was always ringing in our ears, it is one of my father’s favorite sayings. I have always prided myself on my adaptability and my talent of taking things in stride. The old adage, “pride comes before the fall,” certainly applies in my case. Well, I have fallen and I’ve scraped my knees too. My little William has started pre-school. I am now home alone in the mornings and feel completely lost.

School started yesterday at Access International Academy Ningbo and I bravely sent three kids off to school, well, actually Bill and I rode the bus with them. William literally ran from our house to the bus stop with Bill’s old backpack knocking him in the head on every stride. Ruth is in 4th grade, Grace in 2nd , and William in Pre-K. The temperature was a balmy 92 degrees, heat index 103, humidity 1000% , or so it felt as we turned them over to their teachers. We were all quite toasty - think Wicked Witch of the West melting, melting, melting from the water.

They all had a great first day. Ruth announced she didn’t have any homework because all they did was “get to know ya’ stuff.” Gracie got dehydrated on her first day, came home lethargic and threw up. William walked in the door, opened his backpack and declared he HAD to do his homework. He promptly got his notebook and crayons and began coloring.

Getting three kids ready to go and out the door this morning, was a little more challenging. William informed me he could do EVERYTHING himself! He washed his face, brushed his hair, got dressed (didn’t match the first time, the second time it was much better), and put on his own shoes. He was ready to go a full thirty minutes early.

Despite his promptness, he wasn’t eager to eat his breakfast. I tried to get him to eat his peanut butter toast, explaining to him that at school you can’t have food whenever you want and I didn’t want him to be hungry. He said, “O.K., Mom! I have to wait for the last bite to go down, down, down to my leg.”

About 15 minutes before leaving, he came to me with his blanket and said he thought he should stay home because he missed me SO SO much when he was at school. Ruth quickly convinced him that he wanted to go to school and he agreed. He dropped his blanket and off he went.

We walked to the bus stop, he boarded the bus, and waved wildly until the bus was no longer in sight. I turned around - wearing my pink accented exercise pants, red slip-on shoes, non-matching green shirt, unbrushed teeth and remnants of yesterday’s mascara around my eyes -and slowly walked back to the house trying to control the tears that were welling up in my eyes. I miss my three little munchkins so much; I even missed them bugging me for snacks, band-aids and constantly pointing out all their mosquito bites.