Thank you Alex for your inspiration…written by Jeffrey, Alex’s husband
Moscow has always left me with a somber feeling, and this feeling is no more pronounced than in October, Red October, the month when fall fills the air with chilling decay. This autumn ambiance of Moscow is almost always medicated with vodka late into the night, which floods your days with a surreal haze against monolithic Stalinist buildings that bring you back to 1950. This trip was no exception, biting winds and biting vodka; it is how my day one year ago started, lost in a surreal haze that I arguably didn’t come out of until this past week.
October 5, 2010
It was lunch time on a Tuesday when I received the message, ‘phone home urgently and speak to your wife’. At first I dismissed this as Alex reacting to a problem at home, perhaps the kids had gotten in trouble at school, no big deal. I went on with my day’s activities trying to connect with her in the gaps between meetings. It was not until 4pm that day when I finally connected with her. She asked me in a crackling voice if I was in private location to speak, which I wasn’t, so she asked me to call her back when I was.
Now I knew it had to be something big, if it was a trivial problem at home she wouldn’t have asked me to speak in private. As we hung up, my 4pm meeting started and I have to say that the next 60 minutes were probably the longest in my life, my fear at this point was something had happened to one of the children. I could barely speak during the meeting and I never thought for one second that is was something wrong with my wife – nothing ever happens to her. She is the bedrock of our family.
As I watched the clock in this old Stalinist building tick, tick, ticking towards 5pm my mind raced with the worst scenarios. I tried to conclude the meeting, to get out, to get to the park nearby so I could finally speak with my wife. I was accompanied there by my close friend Nazzar, and when Alex gave me the news of her diagnosis of Breast Cancer he was there by my side. In one of these coincidences of life, Nazzar’s family was also going through a very serious cancer fight, so we had spent the past 36 hours talking about dealing with cancer in the family.
My immediate reaction was thank God one of the children had not died. I did not hear the words about my wife the first time, and I had to repeat them out loud to Nazzar before I actually understood what they met. Nazzar literally had to pick me up off the ground and put me into a taxi for the airport to get back to London. On the way, twisting through those hazy streets now overlaid with a deeper gloom I asked myself why wasn’t I there for her today? The reason why was this was NOT SUPPOSE TO HAPPEN! It was routine, and all I could think about was how low of a probability event this was. It was “tail risk” and this stuff doesn’t happen.
As my focus turned to probabilities and spoke to Alex in more detail, I became frustrated that no one could tell me the probability of her survival, was it 95% or 65%. All I could think about at this time was the worst case scenario, and I took great comfort in knowing that my dear friend Bryan who was diagnosed with a 65% survival was still my dear friend alive and kicking, so my wife, like Bryan will survive no matter the odds. But the lack of information made my mind wander in ways it never has.
As I flew back to London that night, the worst set in, as we all know, uncertainty creates the worst anxiety. I remember little of that flight, but What I do remember is that past weekend Alex and I had watched the movie “Date Night”, and in the film Steve Carell who was frustrated with family and married life realizes how great his life is and says, “I’d do it again you know? Us, you, me the kids, all of it. I’d do it again. I’d choose you every time.”
Strangely, the more and more I cherished my wife and family, the more in denial to the events that had just transpired. By the time I got home that night it was so late that Alex and the kids were asleep. There was this point when I realized that there was no evidence of what my wife had told me.It had never happened. It could never happen, and so that night I crawled into bed and just went to sleep in complete denial.
From denial to learning to deal with it, but not accepting it
The next day, my journey from Denial to Dealing with IT started. Most psychologist describe a well travelled road from Denial to Acceptance, one in which a person experiences Anger, Bargaining and Depression with myriad complex emotions in between. My road was different, and in my case I really do not believe I have come to a point of Acceptance, I have only reached a point of learning to Deal with the situation. My road was a sequence of feelings beginning with Denial and moving through Analysis, Fear, Depression, Hope and now, just now, a year later, I find myself stumbling proudly, and confidently into the world of Dealing with it. It is such an honor to be asked by my wife Alex to tell this story of the road I travelled on, both beside her and alone, through shared and personal experiences. It is a blessing to have come to a point of learning to deal with such a life changing event that has impacted not only my wife, but our entire family in so many ways.
Analysis – I am a monster
I am a statistician, and that is what I do for a living as an economist. I assess probabilities of different events occurring, like the current European debt crisis metastasizing into a full-blown global crisis. And the word metastasizing is only appropriate, as I really do view the world as a continuum of events, good events on one side of the norm and bad on the other. We use the word metastasize to describe moving towards the bad events and we use the word improve or progress as we move back towards the good side, and there is a sequence of probabilities attached to each of these events.
Now statistical theory will tell you that the extreme bad and extreme good outcomes have low probabilities attached to them with a high degree of symmetry, meaning the really good things have an equally low probability of happening just as the really bad things. Even though I understand the numbers, I DO NOT VIEW THE WORLD THIS WAY. I am a glass half full person, the good things are more likely to happen than the bad things, and thankfully I have been mostly correct in my life. But I constantly underestimate the probabilities of bad things. Case in point as I sit here today watching the financial world melt down – I still somehow really believe in my heart it will turn around and that the good outcome will prevail. It’s the American in me, we are natural optimists. So this is my starting point – bad things don’t happen!
The first analysis began that Thursday, October 7th, when we visited the breast clinic. I am embarrassed to say that my demeanor that day was not one of the caring husband by his wife’s side, there to give her comfort. I was there as an uptight analyst ready to pounce on the interpretive analysis of a competitor. Alex was terribly offended that day when I spent the time with this first doctor probing her for a concrete probabilities which she was unable to provide as it was still too soon.
As we went home that day, I thought of an episode of the Sopranos where Dr. Melfi asks Tony if he feels like a monster – lacking feelings – when discussing a family illness. Am I such a monster like Tony that I would I analyze things as opposed to feel things? Or is it just being a guy, and that is what we do? I convinced myself that it was normal. But we both agreed this doctor was not committed enough in her answers, so we found a new doctor – reportedly the best in London. I liked him as he spoke in probabilities, and thankfully Alex liked him as well.
The next stop was the surgery – once that tumor was out her we would have all the answers, and we would know for sure that nothing was wrong with my wife. I was sure at this point, there would be no problem, no chemo, no event and this nightmare would end next month. I was so sure of this that the week before the surgery I was walking home, and I called our friend Heather in NY and said, this thing was going to be done in a month’s time and we would be joining her in NY for her birthday party on November 6th – that is true denial! I needed data, I needed the analysis.
The surgery – 15-October – Alex’s mother, Ecky, joined us this week to comfort her as she started the path to recovery. They removed the tumor and a few lymph nodes on the left side for tests. The surgery was a success and she was back home soon. I was convinced we would get the results back shortly and this thing would be over in a month. No doubt about it!
The diagnosis – 21-October – was a day that forever changed the way I view the world. I got a taxi to meet Alex and her mother at the hospital to go over the test results. I got there a little late – no worries, this thing was over. We were going to be relaxing in NYC, drinking red wine and celebrating Heather’s birthday, this whole event a blip in the distant past. When I arrived, Ecky was in tears and motioned me to join them. My heart sank, oh my god what was it – the cancer had metastasized to the lymph nodes. THIS WAS IMPOSSIBLE! I WAS TOLD IT WAS ONLY A 2% PROBABILITY AND 2% PROBABILITY EVENTS DO NOT HAPPEN. THEY DO NOT HAPPEN. This is what the word “tail risk” means and I have never seen it before. It is only acceptable if it leads to a good outcome. Never a bad outcome.
Fear – the unknown path of treatment
This was truly the first time such an unlikely event had occurred. The paradigm I had lived my life by was shattered. Bad things do happen. So she was back into surgery the next day, but this time to take out the lymph nodes. But what did this mean? It meant – stage 2, chemo, radiotherapy and a host of complications. My biggest fear had come true. This wasn’t a one month ordeal, it was a one year ordeal. Denial and Analysis were no longer possible. I was forced to learn about port-a-caths and the delivery of chemo, which is a poison. I know I hurt Alex by not wanting to learn about it, but I tried to avoid it. The whole thing had turned from analysis to fear, Fear of the unknown. What was this poison going to do to her, to our family?
Depression – Phase I: the pain metastasized from Alex to the girls
I tried to hang on to denial to cope with the fear, but it was no longer an option, as too much was staring me in the face. The analysis stage was over, there was nothing I could do about my wife’s fate. It was now in the hands of God. During late November on Saturday the 27th, we went as a family to Toni & Guy, a hair stylist with a team that was devoted to chemotherapy patients.
That afternoon, Alex opted to shave most of her hair off to avoid the painful image of it is falling out in chunks. I agreed that this was the right decision, as it helped all of us and most importantly the children to accept the current reality in one single event as opposed to over several weeks. All three of us – Shepherd, Carsen and Me – crossed a line that day (Ewan was too young at the time to understand) – Mommy had cancer, she was undergoing chemotherapy – this was a real event happening to our Mommy. There was no denying it, as we saw the evidence, the evidence that stared us in the face everyday.
The winter wore on, and it turned out to be the one of the coldest on record, with significant early snow fall in London, which is pretty rare. This only added to the anxiety that the current situation created. In early December, it was decided we need to make the family bigger to cope with the terrifying reality of the chemo. So came our two dogs: Honey and Candy. Carsen got her dog, a dachshund named Honey first. It was the first day of joy we had experienced in months. It wasn’t until after Christmas that Candy, Shepherd’s dog, a white Maltese, joined us. Our dogs are more than pets, they are part of our family and it was Honey that arrived during the darkest days of Chemo. The first night Honey arrived, Alex spent the night with the terrified puppy in our bathroom, creating a special bond that is there today.
But as December wore on, things got worse. Not with Alex, but with the family. I made trips to the school to discuss with teachers how the two girls were doing in class. Carsen was doing ok, partially because she was too young to really grasp what was happening. Instead, it was Shepherd who was having a really hard time grasping how serious it actually was. This was when I realized that a 7 year old has no way of attaching probabilities to events, but understood enough to know that there are different states in the world. She doesn’t know if mommy has a 92% probability of survival as I knew was the case, or a 10% probability – all the events had an equal probability to her.
Most of you may think I am crazy, but late in December I sat down with Shepherd to discuss chance and likelihoods. Why did I do this? It was the following image that the headmaster at her school left me with. Children around 7 are aware of most everything they see, particularly on TV. And it is TV where children this age are exposed to many concepts, but without the aid of a teacher or parent to explain to them in detail the concept. Their minds can run wild. I was told of a TV advertisement for the support of breast cancer research where there is an image of a family, having fun, and then the last image is of the family sitting on a sofa and the advertisement ends with the mother being blurred out of the picture.
I have now seen this clip. It is terrifying. Imagine you are 7 years old, your mother has been diagnosed with cancer, is currently undergoing chemotherapy, and you are watching this video. I am sure that my little girl thought the worse. Shepherd was crying incessantly. I knew she had no way to internalize just how serious this was. Despite my attempts to explain likelihood to her, I was not successful. And me telling her that Mommy was going to be OK mostly likely fell on deaf ears. She was exposed to so much more, from TV, to other children, the high street. She was getting information from every direction. This realization made me very depressed, as I knew Mommy was likely to be ok, but I had no way to convince my children that was the case. I felt hopeless, powerless, how could I protect my children, how could I protect my wife when I didn’t even understand what we were fighting.
Depression – Phase II: complications metastasize into full blown disorders
As the winter dragged on Christmas day came and 25-December marked the low point of the treatment. Instead of our friends joining us for what was supposed to be a joyful Christmas day celebration, Alex’s complications worsened and required hospitalization. The night before, my reaction to the initial signs was fear, denial and disbelief. Her arms and head started to show bulging veins. We thought it was best she go to sleep early on Christmas eve, so I was tasked with preparing for Christmas day alone. This was when my depression hit rock bottom. I drank far too much that night. This was the last thing I needed to be doing with my wife upstairs in bed with some unknown complication, but I had no idea or even belief what these bulging veins would yield the next day.
As her fever soared Christmas morning, we made the hard decision to cancel our plans for the day and send Alex off to the hospital. As we packed her bags and sent her on her way to the hospital that day, my confidence collapsed. I was beginning to become a glass half empty person. Everything had gone wrong. Bad things are happening all the time now. That night, alone with the Children, I tried to focus on how fun it was shopping for everyone’s gift this year with Alex. I really do remember how special it was. The reason why was, given how little energy she had, we had to choose our time well and make it quality, and in doing so it really made for a memorable time – and her Prada shoes she chose that day will always remind me of this cherished day of shopping. She still hasn’t worn them, but I look forward to the day she does.
The next day, Ecky returns to London with Shepherd, Alex’s twin sister, and we all learn together that my wife has a blood clotting problem and will require blood thinning shots for the next 8 months at a minimum. This was so disheartening. How did this happen? Could it get any worse? Yes it could. After her sister and mother went home, several weeks later the complications worsened, the medication was always changing, the hospital visits were endless parades of linoleum floors and faceless doctors. By mid January, she was on so many drugs, I had lost track, and depression had set at its fullest. I would come home, have a glass of wine and just try to go to sleep as soon as possible and maybe I would wake up and this experience would just go away!
Hope – Phase I: my wife was an inspiration, not the other way around
In February, I did wake up and it did start to go away. My wife was happy, which I am embarrassed to say, made me happy. Wasn’t it suppose to work the other way around? Wasn’t I suppose to be the pillar of strength to make her happy? But as I became happy, so did the children and as spring approached we all experienced improving attitudes – we were improving, or progressing back toward the good side of normal. There was a light at the end of the tunnel.
Although Chemo was still a part of Alex’s life, when her sister Lulu came, everything changed. She actually enjoyed life again. She went shopping. She even made reservations at Nobu (as Alex says, Nobu is a “celestial culinary refectory of sort”) and invited me to join her and her sister Lulu. It was the first time we had been out together since September 26, 2010 when our friend Matt and his friend Dave had visited us in London. Alex saw that there is life beyond Chemo. She smiled. She laughed. She was back to normal on the outside, even as I knew she was still in very much pain on the inside.
During this renewed time period, Alex helped me to pick out a bike to join her friends Suzanne and Nancy who were riding for the Haven to raise money for breast cancer awareness. This really helped me come out of this depression. But again wasn’t I suppose to help her? I started to ride, and as I used to say, getting stronger every day – both mentally and physically.
Hope – Phase II: It all quit metastasizing and it started to improve – we were heading back to the norm
This feeling of hope didn’t stop with me, we all improved and it progressed to Shepherd and Carsen, and even little man, Ewan was showing signs of being happy everyday. Mommy may have been in the throws of Chemo, but she was happy and so were we. Was her family simply a mirror of her feelings, or did we experience it all as one. And so we all counted down together those last days of February and it was during this time period that Alex transitioned form a part time blogger to the real thing and we started to seriously keep track of her hits. It was these countdown blogs that we all read religiously, as they gave us all a renewed lease on life.
My favorite was “Here comes the sun…3 days in counting”. It all ended on March 3rd when she wrote “Go tell it on the mountain” – I knew the story so it wasn’t my favorite, but it is everyone else’s, so I recommend you read it, if you haven’t. The reason I like “Hear comes the sun…” is the following quote:
It is never too late to become what you might have been. Life is too short to wake up with regrets. So love the people who treat you right. Forget about the ones who don’t. Believe everything happens for a reason. If you get a second chance, grab it with both hands. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it.
The last day of chemo – 3-March – marked a turning point. Everything started to improve as we moved back toward the norm. Radiotherapy flew by quickly. It was mostly a blur, as we started to deal with problems outside of cancer.
But the significant date was 1:22pm on Thursday, April 28, 2011. It all ended, so we thought. Yes this represented the end of the chemotherapy and radiotherapy, but it no way did it represent the end of this journey. And Hope soon faded to the reality that this journey was to continue to not just months or a year, but years, with life style changes and much more.
Dealing with it – the reality of living with a breast cancer survivor
This transition started abruptly. I failed my wife miserably on this important day which was her last day of treatment. I didn’t recognize how important it was to her, as in my head it ended with Chemo. As she was in such good spirits post Chemo, I had assumed it was all over. But I was wrong, and it was this day that I learned that we all must live conscious of what this had done to her. It has changed her mentally and physically and we must respect that, and so began the last leg of this journey in which I learned to understand and deal with my wife’s new life in a respectful manner.
Some people like to call this accepting, but accepting is not the same thing as respecting – coping or dealing with it is trying to understand the other person, and what they are going through. As spring turned into summer, our lives turned back towards normal, but what became apparent is that we would never return to the old normal, it was a new normal. This required behavioral changes from all of us: Me, Shepherd, Carsen and even Ewan. And I am sure when Alex reads this she is going to say what behavior changes? Yes Alex your entire family has tried, maybe not to the fullest extent, to respect and understand the changes you have experienced.
The summer brought all of us much closer and the time we spent in Texas and Spain together was extremely special and we all grew closer in new ways. When I returned to work this September it was hard to leave them to go to work in way it had never been before. This September, however, the treatment continued making the family connection all that more important.
It was these past two weeks that I really learned to understand just how significant the changes my wife has experienced over the past year, and I have can now deal with her new reality in way I never thought I could. It was when she started the last leg of this treatment, the Mastectomy, which was an ordeal in its own right to get to this point. One which I hope she knows I always supported her during. But it was during this surgery that I finished my journey.
Although the operation went smoothly and she returned home as planned, a week into the recovery she developed an infection. The timing was unfortunate, Ecky her mother who came to be by her side throughout this last surgery was leaving to go home, just as the infection hit. As she left that day, she said to me that your wife needs you and not me. She left me with the blankets to take to Alex, as she walked out of the house. This last complication was time for me to be her husband, to comfort her. I needed to be an inspiration to my wife and not the other way around.
This time unlike the other times, I responded quickly. We went to the doctor as soon as possible. They gave her a big dose of antibiotics, but they didn’t help – the infection was metastasizing – this word had re-entered our world again, but this time we didn’t mess around we both demanded that this infection be cut out of her. The thing with this last decision, was that it would leave her with a minor deformity that would last for a life time.
Why was this important? Before this day – 28-Septermber – I always had rest assured that this entire cancer experience would eventually be a distant memory, as without a physical deformity to remind us, the memory would fade. But at this juncture it was now very clear to me, that this was with us for a lifetime, and I need to learn to deal with what this has done to my wife, as it will never leave this person I love dearly. This was when my emotional haze that started in Moscow nearly a year earlier ended. It ended with the reality of the situation that life is fragile and all you have in this world is the people you love. “I’d do it again you know? Us, you, me the kids, all of it. I’d do it again. I’d choose you every time.”