The Big "C".

An old Yiddish saying says,  “Mann Tracht, Un Gott Lacht” ("Man makes plans....and God laughs.") I had not intended to blog about this subject but so much has happened that has changed my mind, if a little reluctantly.

Let me explain. I had been pushing healthy habits very hard this year. With my trusty Fitbit egging me on, I was extending myself to walk up to 20,000 steps a day and working on climbing the beautiful mountains that surround Provo, Utah, my home since 2016. My weight was in a healthy range and I was feeling good except for one small detail: My back began to hurt me. My thoughts initially went to, "I guess I am a Van der Voorn after all" as back problems seem to plague my family of origin. 

I am not sure what logic I was following but I figured that if I just kept walking it through then my back would get the message to get in line and behave. And then came one day when I headed off to a regular bi-monthly lunch in South Jordan with a fabulous group of women. As I stepped out of the car in the car park I literally collapsed to the ground, unable to walk. I told myself this was ridiculous and I took one painful step at a time and entered the restaurant. The pain was excruciating but no way was I going to give in to it. 


After lunch I almost crawled back to the car and decided to be even more brave. I would go shopping at the mall a little further north for those comfortable shoes I wanted. Bad idea! I crawled into the mall and then crawled back out immediately realizing this was more serious than I was crediting. Alan was in Brazil for another week and here was I, outside a mall in Murray, unsure how to get both vehicle and myself back home. With a very fervent prayer I got into the driver's seat and willed myself to drive. Our Volkswagen is a stick shift and with each gear change as I travelled down the I-15 came this panic that I couldn't do this. 

Somehow, I made it home 45 minutes later and collapsed in a heap on my bed, this time very aware I was going nowhere. I burst into tears just as the phone rang and Alan was checking in with me. Immediately he sprung to action and organized our son-in-law to take me to the urgent care. Even then, I was still telling myself that I have a back problem and it just needed some help.

Once Alan returned, we began looking for someone to help with this new problem and we found a doctor/osteopath who fit our every need.  I became excited that all this would be resolved and I could get back to my walks.

I was so confident that we planned this trip with our son, Aaron who was coming over for Christmas with us. "Let's pick him up in Los Angeles and go travelling together to see the Grand Canyon, Zions National Park and everything in between." Great idea, right? We booked a car, accommodation, budgeting our momentous trip. 

I was very excited but also getting nervous because the pain in my back had not subsided that much. Simultaneously in December, I went for my annual physical including blood work and our new doctor ordered some X-rays to see what was going on. My blood work showed some not so good results for the first time in my life: I was apparently anemic, high protein levels, low sodium levels and something called my creatinine levels were high, all telling me a message that I didn't understand.

The day before we were due to drive down to Los Angeles at the beginning of our adventure with Aaron, Alan had his turn with our new doctor. "Have you looked at Marianne's X-Rays yet?" Alan inquired. The doctor dutifully pulled them up and Alan described a serious look come over his face. My poor husband was then confronted with the next comment, "You have chosen the right doctor, I am really good with hospice care." Alan wanted the doctor to tell me what he saw on the X-rays and they agreed he would call me the following morning. That evening, Alan came to bed with me. I had difficulty in rolling toward him as the pain became excruciating even to move a centimeter. In my ear I heard this quiet sobbing and I was confused. Alan usually communicated everything with me, highs and lows but here he was silent.

I guess I already knew that driving all the way to Los Angeles given the pain was not going to work. The doctor called me and told me his medical opinion, "I believe that you have multiple myeloma, a cancer of the blood. I am 98% sure and I would like to refer you to an oncologist immediately to confirm the diagnosis. I don't advise that you leave for Los Angeles." As we visited further with our doctor that same day, he showed me my X-rays to reveal that my pelvis looked like Swiss cheese with little holes or lesions across the full breadth, hence the agonizing pain I was experiencing. 

Two ton truck! Just drove through my home!! How can this be? My first instinct was to google it. Not always the brightest idea. My first foray on the subject of this particular cancer had these words screaming at me, "Not curable", "Average life expectancy has increased to five years." However, there was a ray of hope in the middle of those words on google. If I could find a specialist in this particular cancer then I could potentially increase my life expectancy by 38%. Search some more. 

Initially, I went into a total panic. I am facing my mortality and I am going to die. Travelling is clearly out of the question, so what about my 4 children, my 5 grandchildren and my 89 year old mother all living in New Zealand. Would I never see them again? Like a chook with her head chopped off, I raced around trying to think about what I was leaving to my children, desperate about the idea of not seeing them again because according to Google, I was going to die. It was all very black and I fell into a deep hole. 

There are two experts in this cancer listed in Utah, both in the Huntsman Cancer Institute. "Please can you refer me to one of these two doctors?" My doctor listened to my pleas and next thing you know I have a referral to the Huntsman Cancer Hospital and I became a patient of Dr. Djordje Atanackovic, a veteran in this cancer. 

This was all happening so rapidly but right beside me, humoring my shifting moods, my panic, my pleas to do something was Alan. He has been a constant in all of this and I had this realization that I was not on my own. For the first time in my life in a real crisis, I was physically, emotionally and spiritually NOT on my own. 

We flew Aaron directly into Salt Lake City airport and I mustered the strength to be there to pick him up. I didn't tell him the news that night. He was exhausted after many hours on planes. The following morning, I plucked up the courage and told him that my GP had diagnosed this cancer. We wept on each other's shoulders and held on tight. It was a special but painful moment with my eldest son. The diagnosis was not yet confirmed but 98% were pretty high odds. We wept some more.

They wanted me to come into the hospital on Christmas Eve day but some things are sacred and I crazily believed that I could have Christmas. It did not go so well as I was ill all day and not in any position to enjoy it. Alan and Aaron took over from me as I sat around helpless for the first time in many Christmases. 

The very next day found me in an interview with Dr, Atanackovic and his PA, Jan. Dr A as he is affectionately known is German with this delightful soft German accent. I arrived in his office full of questions but still in my black hole. After explaining his agreement with my doctor on the diagnosis, he ordered the dreaded bone marrow biopsy. Americans have this deal where they are afraid of being sued and so they tell you EVERY little detail, even when you would rather not hear it. 

With this gentleness that I will always be grateful for, Dr, Atanackovic then said something that pulled me right out of that hole. Aaron and Alan were both there and we all smiled as he said, "You vill lead a normal life again!" He spoke of their treatment plans, their hopes and expectations. You mean I am not going to suddenly die? There were warnings that everyone was an individual and results varied but he went on to say, "You should have hope, because hope is very real in this cancer." I hung on his every word and I believed him. 

And so began my journey with the big C. The biopsy confirmed the diagnosis (and wasn't nearly as scary as they had described). That same day I was hospitalized to give my struggling kidneys a  chance to rebound. This blog ends here but I want to share this journey so there is more to come. My "pen" is at the ready.