Thursday, July 1, 2010
Tuesday, June 29, 2010
Reflection
As children, we rarely stop to consider the people our parents are, have been and want to become. I've been sitting next to, sleeping with and breathing in my dad for the past 5 days, and although he can barely speak you can learn a lot by observing.
My dad loves clocks. He has a clock in his living room that ticks the seconds and chimes the time on the hour. There are four, almost identical clocks on the book shelf in his room and two on his bedside stand-one digital the other analog. He told me once that there are many forms of time; captured in different ways. It wasn't until I stopped to look around how affected he is by it.
My dad hangs his art too high, but he has a lot of it. Each picture is of nature, culture or water. All things I have known my dad to love, but did not realize he surrounded himself with.
My dad loves and adores his children. He keeps two albums, one of Greg and one of me, in the bottom drawer of a dresser in his living room. They chronicle our lives together. I had no idea he had them. He kept old fathers' day cards. He has I poem I wrote him hanging on the wall in his den, along with a tiny mold of my hand and a pen jar I made him. He has a photo collage of my brother and I in his office and a picture of us on many surfaces.
In the same living room drawer I find that he was an incredibly handsome man (young and old). He loved to journal and (sometimes in a 'grass' and hash induced hazed) looked at the world through the eyes of a philosopher. He was moved by 911, the election of Obama and the demise of the Seattle PI. He saved the newspapers for these events. He touched and was touched by people from all walks of life from all over the world. He loved and is loved deeply. He is sentimental.
My dad has his own chaotic organization system and doesn't indulge in expensive or unnecessary items. His love for biking can be found on his wall of bike art, the two bikes he keeps inside his house and his set of drawers dedicated to his biking wardrobe.
He recycles and composts. He loves ouzo and a good beer. He owns one calculator and it is solar powered. His Mac is his biggest indulgence. He should own stock in IKEA. He has enough fleece to warm Antarctica and probably wishes he had the change to visit. He has faded Tibetan prayer flags, Christmas lights and a bright fish kite hanging on his porch. He likes color.
My dad isn't done living, but he lost his choice. It is comforting to know how full his life has been. That even as we say goodbye, he is surrounded by people that love him to their core, people that have been touched by his generosity, his huge heart and his thirst for life. People, that while tears run down their face, only wish him peace.
My dad is afraid he won't be remembered. He thinks people will forget about him soon after he is gone. Forgetting him will be impossible. When someone touches your heart, your soul, they are a part of you, and you cannot forget, will not forget.
I don't want to say goodbye to my dad, I am not ready to lose him, I cannot describe the desperate loss I feel, even while he is breathing in the next room. I hope he knows how much I love him and that I will carry his person with me as I continue to travel through life.
My dad loves clocks. He has a clock in his living room that ticks the seconds and chimes the time on the hour. There are four, almost identical clocks on the book shelf in his room and two on his bedside stand-one digital the other analog. He told me once that there are many forms of time; captured in different ways. It wasn't until I stopped to look around how affected he is by it.
My dad hangs his art too high, but he has a lot of it. Each picture is of nature, culture or water. All things I have known my dad to love, but did not realize he surrounded himself with.
My dad loves and adores his children. He keeps two albums, one of Greg and one of me, in the bottom drawer of a dresser in his living room. They chronicle our lives together. I had no idea he had them. He kept old fathers' day cards. He has I poem I wrote him hanging on the wall in his den, along with a tiny mold of my hand and a pen jar I made him. He has a photo collage of my brother and I in his office and a picture of us on many surfaces.
In the same living room drawer I find that he was an incredibly handsome man (young and old). He loved to journal and (sometimes in a 'grass' and hash induced hazed) looked at the world through the eyes of a philosopher. He was moved by 911, the election of Obama and the demise of the Seattle PI. He saved the newspapers for these events. He touched and was touched by people from all walks of life from all over the world. He loved and is loved deeply. He is sentimental.
My dad has his own chaotic organization system and doesn't indulge in expensive or unnecessary items. His love for biking can be found on his wall of bike art, the two bikes he keeps inside his house and his set of drawers dedicated to his biking wardrobe.
He recycles and composts. He loves ouzo and a good beer. He owns one calculator and it is solar powered. His Mac is his biggest indulgence. He should own stock in IKEA. He has enough fleece to warm Antarctica and probably wishes he had the change to visit. He has faded Tibetan prayer flags, Christmas lights and a bright fish kite hanging on his porch. He likes color.
My dad isn't done living, but he lost his choice. It is comforting to know how full his life has been. That even as we say goodbye, he is surrounded by people that love him to their core, people that have been touched by his generosity, his huge heart and his thirst for life. People, that while tears run down their face, only wish him peace.
My dad is afraid he won't be remembered. He thinks people will forget about him soon after he is gone. Forgetting him will be impossible. When someone touches your heart, your soul, they are a part of you, and you cannot forget, will not forget.
I don't want to say goodbye to my dad, I am not ready to lose him, I cannot describe the desperate loss I feel, even while he is breathing in the next room. I hope he knows how much I love him and that I will carry his person with me as I continue to travel through life.
Monday, June 28, 2010
Love from Abroad
9 years ago my dad was a host to a spanish foreign exchange student. Upon hearing the most recent news, he sent my brother the below email. It fills me with immense happiness.
"The truth Greg is I'm not brave enough to hear the voice of your dad. I would cry, a lot. I always thought I would have the chance to save money fast to travel everywhere I want, and visit Bob at Seattle again.
But that's life. I was in Issaquah in 2001, 9 years ago, just during a month. But that was enough time for your dad to have an influence on me. In some way, he helped me to mature and see things with other eyes. When the rest of my then-classmates arrived to Seattle, they had very rich (in money) couples with little kids waiting for them. They told me how big where those houses and their rooms with TVs, computers, videogames and all that stuff. But when they wanted to visit some place, they had to pay for everything... I remember your dad never let me pay for anything. Most of the time, they (classmates) were also taking care of their children like babysitters, and closed in their rooms. Instead, your dad carried me everywhere. I explored the city of Seattle better than anyone thanks to him; we went to that National Park, remember, the rainforest at the Pacific Ocean... and more different spots. He introduced me his family, your grandfather, his friends. I remember we spent most of the time on the road, always doing something different.
It sounds great as a memory but as I said, he had an influence on me. He is the reason why, while I've been studying me career, I learnt scuba diving (which cost me part of my left ear, something I do not regret), get the license to play (not use) firearms, riding horses, drive cars, have different kind of weird adventures with girls, and also jump from airplanes. Sometimes life is too short, and the difference between your dad and most of people is he probably had a rich life. He traveled, he has used his legs, he has a family, people who love him... Fuck I also remember everyday when he told me how he hated to work in an office, and joined some fishing boat during a while. Bob is all about having a good life. It's not hard to love someone who expects the best of you and takes care of you. You know him better, but when I hear about if there are still good people on Earth is easy to think in Bob. See, I would not be able to tell him all this with my own voice. I only hope he has a good journey. And I don't need to tell him I love him because we both know already. A strong hug to you Greg."
"The truth Greg is I'm not brave enough to hear the voice of your dad. I would cry, a lot. I always thought I would have the chance to save money fast to travel everywhere I want, and visit Bob at Seattle again.
But that's life. I was in Issaquah in 2001, 9 years ago, just during a month. But that was enough time for your dad to have an influence on me. In some way, he helped me to mature and see things with other eyes. When the rest of my then-classmates arrived to Seattle, they had very rich (in money) couples with little kids waiting for them. They told me how big where those houses and their rooms with TVs, computers, videogames and all that stuff. But when they wanted to visit some place, they had to pay for everything... I remember your dad never let me pay for anything. Most of the time, they (classmates) were also taking care of their children like babysitters, and closed in their rooms. Instead, your dad carried me everywhere. I explored the city of Seattle better than anyone thanks to him; we went to that National Park, remember, the rainforest at the Pacific Ocean... and more different spots. He introduced me his family, your grandfather, his friends. I remember we spent most of the time on the road, always doing something different.
It sounds great as a memory but as I said, he had an influence on me. He is the reason why, while I've been studying me career, I learnt scuba diving (which cost me part of my left ear, something I do not regret), get the license to play (not use) firearms, riding horses, drive cars, have different kind of weird adventures with girls, and also jump from airplanes. Sometimes life is too short, and the difference between your dad and most of people is he probably had a rich life. He traveled, he has used his legs, he has a family, people who love him... Fuck I also remember everyday when he told me how he hated to work in an office, and joined some fishing boat during a while. Bob is all about having a good life. It's not hard to love someone who expects the best of you and takes care of you. You know him better, but when I hear about if there are still good people on Earth is easy to think in Bob. See, I would not be able to tell him all this with my own voice. I only hope he has a good journey. And I don't need to tell him I love him because we both know already. A strong hug to you Greg."
Final Days
I haven't felt much like writing, but wanted to post an email I just wrote.
hey everyone, thanks for the sweet emails and texts. like yesterday, my
dad is in and out of consciousness. most of it is due to the morphine
and lorazapram he takes. if he misses a dose, he becomes very anxious
and agitated. We are told that the body shutting down can be painful,
scary and confusing. he wakes up from time to time, makes a joke and
looks at us with his big blue eyes. Most of my time is spent sitting and
holding his hand, climbing into his little hospital bed and listening to
his heart beat or reading to him from my book. greg brought his guitar
down and has been playing. a lot of people are in and out, mostly
friends of my dads who clearly love him very much. it is wonderful to
see how many lives he has touched and how many hearts will feel empty
when he is gone. greg and i are staying as strong as possible and will
camp out at my dad's place until he decides to take his last breath.
although there are many tears, things have been peaceful.
hey everyone, thanks for the sweet emails and texts. like yesterday, my
dad is in and out of consciousness. most of it is due to the morphine
and lorazapram he takes. if he misses a dose, he becomes very anxious
and agitated. We are told that the body shutting down can be painful,
scary and confusing. he wakes up from time to time, makes a joke and
looks at us with his big blue eyes. Most of my time is spent sitting and
holding his hand, climbing into his little hospital bed and listening to
his heart beat or reading to him from my book. greg brought his guitar
down and has been playing. a lot of people are in and out, mostly
friends of my dads who clearly love him very much. it is wonderful to
see how many lives he has touched and how many hearts will feel empty
when he is gone. greg and i are staying as strong as possible and will
camp out at my dad's place until he decides to take his last breath.
although there are many tears, things have been peaceful.
Monday, June 14, 2010
3 Updates, 1 entry
Cannon Beach (May 23-28)~ We spent an amazing week at the beach. My parents are divorced, however my mom and her adorable dog joined us for the occasion. My dad had an opportunity to get to know my boyfriend better as well. We made delicious meals, walked the beach, rented banana bikes and laughed. We laughed a lot. It was such a pleasure watching the people I love laughing together. Although my dad was unable to join us on our walks, he did get on a bike for the first time in almost a year. It brought so much joy to his face and our hearts. If you would like to see some pictures from our trip, please copy and paste this link: http://www.facebook.com/album.php?aid=33845&id=1677579257&l=cb531a6301
Decisions~ About two weeks ago, my dad went in for a CT scan to determine whether or not the Tarceva was working. This particular scan filled me with an unmeasurable amount of anxiety. We could find out if the drug was working. We could find out if the drug was working and my dad could decide to go off of it because it gave him a skin rash and fed on what little energy he has. We could find out the drug wasn't working and watch our glimmer of hope get sucked into the black hole of despair. We waited 5 long days for the results to be posted, and when they were, I felt nothing. A few of the tumors had increased in a size, one had decreased. All in all, a pretty unremarkable result. It wasn't obvious that the drug was working yet we had no idea if it was. I spoke to my dad at 7pm the day the results were posted and he too was devoid of emotion. It wasn't until the next morning that he made a decision. He was going off the Tarceva and back on Hospice.
When he was a little boy, his grandmother was sitting in the living room drinking a cup of tea. He knew her as vivacious and she looked sullen and withdrawn. "Nana", he said, "what is the matter?". She drew him close, looked into his innocent blue eyes and told him that she would die soon. He asked her how she knew, to which she replied, "I have had a cup of tea everyday for as long as I can remember and today I am unable to find the strength to bring my cup of tea to my mouth." She died less than 6 months later.
This is how my dad described his decision to go back on Hospice. I suppose he is drinking his last cup of tea.
Scared~ As I write this, my dad is tucked in at the Overlake ICU. He has a staph infection, and in his weakened condition, it could have been life threatening. Lucky for us, he is responding to the antibiotics and should be released tomorrow or the next day. Fighting this infection has taken a lot out of him. He is in pain, he is tired, it is difficult for him to muster up enough energy to have a 5 minute conversation. We don't know where this will leave him. Will he bounce back? Is this the beginning of the end? Will he need constant help at home? Will he have any fight left in him?
I've watched friends lose parents unexpectedly before their time. I watched my beloved Yaya die almost a year ago. I watch my mom grieve the loss of her very best friend everyday. I've seen and felt a lot of pain and it has given me strength. However, no matter how strong you believe yourself to be, nothing prepares you to watch a part of yourself suffer and die. I cannot imagine this hurting more after he is gone, but I know it will.
Decisions~ About two weeks ago, my dad went in for a CT scan to determine whether or not the Tarceva was working. This particular scan filled me with an unmeasurable amount of anxiety. We could find out if the drug was working. We could find out if the drug was working and my dad could decide to go off of it because it gave him a skin rash and fed on what little energy he has. We could find out the drug wasn't working and watch our glimmer of hope get sucked into the black hole of despair. We waited 5 long days for the results to be posted, and when they were, I felt nothing. A few of the tumors had increased in a size, one had decreased. All in all, a pretty unremarkable result. It wasn't obvious that the drug was working yet we had no idea if it was. I spoke to my dad at 7pm the day the results were posted and he too was devoid of emotion. It wasn't until the next morning that he made a decision. He was going off the Tarceva and back on Hospice.
When he was a little boy, his grandmother was sitting in the living room drinking a cup of tea. He knew her as vivacious and she looked sullen and withdrawn. "Nana", he said, "what is the matter?". She drew him close, looked into his innocent blue eyes and told him that she would die soon. He asked her how she knew, to which she replied, "I have had a cup of tea everyday for as long as I can remember and today I am unable to find the strength to bring my cup of tea to my mouth." She died less than 6 months later.
This is how my dad described his decision to go back on Hospice. I suppose he is drinking his last cup of tea.
Scared~ As I write this, my dad is tucked in at the Overlake ICU. He has a staph infection, and in his weakened condition, it could have been life threatening. Lucky for us, he is responding to the antibiotics and should be released tomorrow or the next day. Fighting this infection has taken a lot out of him. He is in pain, he is tired, it is difficult for him to muster up enough energy to have a 5 minute conversation. We don't know where this will leave him. Will he bounce back? Is this the beginning of the end? Will he need constant help at home? Will he have any fight left in him?
I've watched friends lose parents unexpectedly before their time. I watched my beloved Yaya die almost a year ago. I watch my mom grieve the loss of her very best friend everyday. I've seen and felt a lot of pain and it has given me strength. However, no matter how strong you believe yourself to be, nothing prepares you to watch a part of yourself suffer and die. I cannot imagine this hurting more after he is gone, but I know it will.
Wednesday, May 12, 2010
Sharing
I want to share a few excerpts from an email my dad sent my brother and I. He sent this 5 days after our return from Arizona.
"What a difference a day makes. Two nights ago I wanted to call jamie and tell her to come quick because the alien in me was fighting me and he was definitely winning. Every breath I took was an incredible effort. Breath is supposed to give life but mine were just making me feel weaker, breath, after breath, after breath. I really did not think I would be here this morning. And it really pissed me off.
Then yesterday we walked. It felt good, two miles. I still puffed like an old steam train climbing a long grade but I walked with confidence and I even think close to a normal pace.
So I looked at my vial of morphine, and looked at my vial of morphine and thought, well nothing ventured, nothing gained. I am so drug adverse. I was convinced that even touching it would turn me into a scab infested drug addled addict. Took the minimum dose and felt within an hour much relaxed
breathing. I felt nothing different. Pretty cool.
I even walked to the library after I got home from the hike yesterday. Walked three miles total between the two excursions. It was so nice to see so many people walking, enjoying the blue sky, the mild day and a city filled with white and pink dogwood blossoms. I now have a good book to read.
So I have put the alien at bay. I can hear him cowering in some dark corner of my closet. I do not fear him now. My couple of days of hospice were good because they provided me with some very low dosage, but for me, very effective comfort aids. Now is Sunday pancake time. And I have an appetite!
Love , dad"
"What a difference a day makes. Two nights ago I wanted to call jamie and tell her to come quick because the alien in me was fighting me and he was definitely winning. Every breath I took was an incredible effort. Breath is supposed to give life but mine were just making me feel weaker, breath, after breath, after breath. I really did not think I would be here this morning. And it really pissed me off.
Then yesterday we walked. It felt good, two miles. I still puffed like an old steam train climbing a long grade but I walked with confidence and I even think close to a normal pace.
So I looked at my vial of morphine, and looked at my vial of morphine and thought, well nothing ventured, nothing gained. I am so drug adverse. I was convinced that even touching it would turn me into a scab infested drug addled addict. Took the minimum dose and felt within an hour much relaxed
breathing. I felt nothing different. Pretty cool.
I even walked to the library after I got home from the hike yesterday. Walked three miles total between the two excursions. It was so nice to see so many people walking, enjoying the blue sky, the mild day and a city filled with white and pink dogwood blossoms. I now have a good book to read.
So I have put the alien at bay. I can hear him cowering in some dark corner of my closet. I do not fear him now. My couple of days of hospice were good because they provided me with some very low dosage, but for me, very effective comfort aids. Now is Sunday pancake time. And I have an appetite!
Love , dad"
Grand Canyon
As we drove along highway 64 towards the Grand Canyon, the temperature hovered around 30 degrees, the fog lingered and snow pelted our window. We anticipated small crowds and limited visibility. The walk to Mathers lookout was flanked by detour signs, construction vehicles and grumbling tourists. We kept our heads down and our ski hats pulled firmly over our ears. My dad relied on two walking sticks and my brother and I shortened our gate to accommodate his pace. This was not how I envisioned our first day at the Canyon.
However, as we approached the lookout, the snow grew tired and stopped. When we reached the edge, the Grand Canyon was dramatically unveiled as the fog was overwhelmed by blue sky and young sunshine. To describe it as amazing is a gross understatement.
This moment is the perfect metaphor for my dad's illness. Some days the fog is heavy and unwavering, limiting our ability to persevere and remain hopeful. There are numerous, unexpected bumps in the road and at times we must proceed with caution. We have to keep our head down and keep moving forward, because if we stop, we may never see the amazing view at the end of the ride.
We spent the next 6 days driving through Navajo land, watching the sun set, taking in Monument Valley, Canyon de Shelley and Sedona. We took small walks through Oak Canyon, discovered the whimsical town of Jerome on a hunt for an In-N-Out burger, and revisited the Grand Canyon. Our eyes were opened to a bigger world and we hungrily took in as much as we could.
The elevation made it difficult for my dad to breath, his hands shook more than I'm comfortable with, he was much quieter than usual and unable to accompany my brother and I on the hikes. But, you know what? He never complained. He did as much as he could and he witnessed our mouths drop when the Grand Canyon appeared from behind the fog.
We share these memories. They are ours for the keeping and no illness or detour sign can ever take that away from us.
However, as we approached the lookout, the snow grew tired and stopped. When we reached the edge, the Grand Canyon was dramatically unveiled as the fog was overwhelmed by blue sky and young sunshine. To describe it as amazing is a gross understatement.
This moment is the perfect metaphor for my dad's illness. Some days the fog is heavy and unwavering, limiting our ability to persevere and remain hopeful. There are numerous, unexpected bumps in the road and at times we must proceed with caution. We have to keep our head down and keep moving forward, because if we stop, we may never see the amazing view at the end of the ride.
We spent the next 6 days driving through Navajo land, watching the sun set, taking in Monument Valley, Canyon de Shelley and Sedona. We took small walks through Oak Canyon, discovered the whimsical town of Jerome on a hunt for an In-N-Out burger, and revisited the Grand Canyon. Our eyes were opened to a bigger world and we hungrily took in as much as we could.
The elevation made it difficult for my dad to breath, his hands shook more than I'm comfortable with, he was much quieter than usual and unable to accompany my brother and I on the hikes. But, you know what? He never complained. He did as much as he could and he witnessed our mouths drop when the Grand Canyon appeared from behind the fog.
We share these memories. They are ours for the keeping and no illness or detour sign can ever take that away from us.
Friday, April 23, 2010
Tired
We are proceeding under the assumption that my dad has non-small cell lung cancer. He is a candidate for Tarceva and has been taking it for 5 days. Tarceva is a clinical trial, daily chemo drug that specifically targets non-small cell lung cancer. If he responds, he could likely live another 1-3 years. If you have been keeping track, this is considerably better than the 2-5 months we are currently facing.
The drug is $150 a day and is not covered by Group Health. We are brought up to believe that life is priceless, but my Dad's insurance thinks it should cost about $55,000 a year. We are working to see if the drug company will pay for the pill. Fingers crossed.
My Dad is tired. He is tired of answering questions. He is tired of filling out forms. He is tired of keeping track of all the different pills he must take to feel "normal". He is most tired when he loses track and can actually feel the cancer. He is tired of waiting to see if the latest diagnosis is accurate. He is tired from the chemo drug. He is tired from the steroids he has to take for energy, but give him insomnia. He is tired of being terminal. He is tired of being jerked around within a system that holds the key to his life. He is tired. He is tired and I can't fix it for him.
The drug is $150 a day and is not covered by Group Health. We are brought up to believe that life is priceless, but my Dad's insurance thinks it should cost about $55,000 a year. We are working to see if the drug company will pay for the pill. Fingers crossed.
My Dad is tired. He is tired of answering questions. He is tired of filling out forms. He is tired of keeping track of all the different pills he must take to feel "normal". He is most tired when he loses track and can actually feel the cancer. He is tired of waiting to see if the latest diagnosis is accurate. He is tired from the chemo drug. He is tired from the steroids he has to take for energy, but give him insomnia. He is tired of being terminal. He is tired of being jerked around within a system that holds the key to his life. He is tired. He is tired and I can't fix it for him.
Saturday, April 10, 2010
Confusion
I haven't been writing lately, because nothing much had changed. I wake up each morning trying to ignore the pain of the growing hole in my heart, put on a brave face and walk head on into a world that I realize cannot understand, at this moment, what I am going through. It helps to try and pay attention to the moments in time that should not be rushed through. This was the essence of my day, I had found my own form of survival and it was working, for the most part.
I neglected to mention that a few days after our meeting with Santa, we went to Seattle Cancer Care Alliance to meet with the head of their lung department. The Dr. is from Brazil and has a very pleasant accent. Although his voice was music to my ears, it carried the same, familiar tune. By this time, my dad and I were both numb to the outcome and no tears were shed. "...there are no other treatment options, won't make it through the summer, blah blah, we will take another look at the pathology reports, blah blah.." I am now so familiar with this disease, that he asked whether or not I am in the medical field. I am not. So we left, nothing lost, nothing gained.
A week after this meeting, my dad received a phone call from his Brazilian doctor. "Mr. Miller, we reviewed the cancer cells from your brain tumor and we believe they are not small cell, they are non small cell. We will give you a definitive answer as soon as we can, but we believe you have non small cell lung cancer and were misdiagnosed. Misdiagnosed. A word alien to my vocabulary and my method of survival. A word that could throw a wrench into a game that we had just figured out the rules. A word that took my numbness to an entirely different level. A word that brought my dad elated, uncontrollable tears.
We waited over the weekend and the words above transformed from preliminary to definitive. They had yet to review the cells taken from the lung biopsy, but it is beyond rare for a person to have both small and non small cell cancer. Misdiagnosed. There are treatment options for non small cell cancer and he may be eligible for a clinical trial. He could have been 9 months into a clinical trial that could give him years. Everything is a question mark. Does he have two kinds of cancer? Will he be eligible for a trial or has the cancer progressed too far in the past 9 months? Are we back at square one or was he given a new lease on life? How could this happen? How, in the world, could this have possibly happened? Misdiagnosed.
I understood that my dad would not make it through the summer. I understood that it would be painful. I understood what it meant to start grieving before a loss. I had taken the past 9 months attempting to wrap my head around something that happens to other people and never yourself. Even though losing my dad before his time would be, to date, the most painful thing I had gone through, I knew I would survive. Now, misdiagnosed. Everything I had come to know was swept away. As hard as I tried to gather it all back, to hold on to what was left of my survival, it was gone. Lost in a four syllable word.
Now we wait. Another week before the second biopsy comes back. Then we learn our new form of survival.
I neglected to mention that a few days after our meeting with Santa, we went to Seattle Cancer Care Alliance to meet with the head of their lung department. The Dr. is from Brazil and has a very pleasant accent. Although his voice was music to my ears, it carried the same, familiar tune. By this time, my dad and I were both numb to the outcome and no tears were shed. "...there are no other treatment options, won't make it through the summer, blah blah, we will take another look at the pathology reports, blah blah.." I am now so familiar with this disease, that he asked whether or not I am in the medical field. I am not. So we left, nothing lost, nothing gained.
A week after this meeting, my dad received a phone call from his Brazilian doctor. "Mr. Miller, we reviewed the cancer cells from your brain tumor and we believe they are not small cell, they are non small cell. We will give you a definitive answer as soon as we can, but we believe you have non small cell lung cancer and were misdiagnosed. Misdiagnosed. A word alien to my vocabulary and my method of survival. A word that could throw a wrench into a game that we had just figured out the rules. A word that took my numbness to an entirely different level. A word that brought my dad elated, uncontrollable tears.
We waited over the weekend and the words above transformed from preliminary to definitive. They had yet to review the cells taken from the lung biopsy, but it is beyond rare for a person to have both small and non small cell cancer. Misdiagnosed. There are treatment options for non small cell cancer and he may be eligible for a clinical trial. He could have been 9 months into a clinical trial that could give him years. Everything is a question mark. Does he have two kinds of cancer? Will he be eligible for a trial or has the cancer progressed too far in the past 9 months? Are we back at square one or was he given a new lease on life? How could this happen? How, in the world, could this have possibly happened? Misdiagnosed.
I understood that my dad would not make it through the summer. I understood that it would be painful. I understood what it meant to start grieving before a loss. I had taken the past 9 months attempting to wrap my head around something that happens to other people and never yourself. Even though losing my dad before his time would be, to date, the most painful thing I had gone through, I knew I would survive. Now, misdiagnosed. Everything I had come to know was swept away. As hard as I tried to gather it all back, to hold on to what was left of my survival, it was gone. Lost in a four syllable word.
Now we wait. Another week before the second biopsy comes back. Then we learn our new form of survival.
Wednesday, March 24, 2010
Hope for a Miracle on 116th St
My Dad and I went to Overlake today to meet with an Oncologist referred to him by a friend of a friend. We didn't have any expectations, but it is impossible to ignore hope when it glimmers.
He walked in resembling a younger version of Santa Claus and I would be lying if I said I didn't get the Christmas Eve butterflies. How could this jolly man give us bad news? Impossible!
With impeccable bedside manner and soulful eyes, he delivered the same news we heard from the Group Health Oncologist about a month ago. While I appreciated his approach, I think it hurts more to be served words like "about 3 months", "general declination", "extensive", "fast growing" and "I am so sorry" from Santa. Where was our Christmas miracle?
We left Santa with a spurious smile and a garbage basket full of used tissues.
Today has been hard. Facing mortality, even when it isn't your own, is a daunting task on a good day.
He walked in resembling a younger version of Santa Claus and I would be lying if I said I didn't get the Christmas Eve butterflies. How could this jolly man give us bad news? Impossible!
With impeccable bedside manner and soulful eyes, he delivered the same news we heard from the Group Health Oncologist about a month ago. While I appreciated his approach, I think it hurts more to be served words like "about 3 months", "general declination", "extensive", "fast growing" and "I am so sorry" from Santa. Where was our Christmas miracle?
We left Santa with a spurious smile and a garbage basket full of used tissues.
Today has been hard. Facing mortality, even when it isn't your own, is a daunting task on a good day.
Thursday, March 18, 2010
Smiling
My Dad, and I quote, "had a wonderful day today." I have not heard absolute delight in his voice in over 8 months. I will be smiling for the rest of the afternoon.
You have to take the good with the bad, but today, and probably just today, I won't think of anything but my Dads' wonderful day.
Enjoy yours.
You have to take the good with the bad, but today, and probably just today, I won't think of anything but my Dads' wonderful day.
Enjoy yours.
Monday, March 15, 2010
Planning Time
We made plans today: a week in and around the Grand Canyon and a week listening to the waves crash at Cannon Beach.
When I was a little girl, my family would take an annual vacation to Cannon Beach. The memories are faint, but cherished. I recall being dressed head to toe in my red Columbia rain gear, chasing the dog and finding hidden treasures in tide pools. We used to walk from Tolovana Inn to Haystack rock, singing 'the ants go marching' so I would forget the cold and the long walk atop my little legs.
I've outgrown my red rain suit and it is very possible that the walk is short. However, I look forward to discovering hidden treasures with my dad, to feel like that little girl again, to start opening this gift of time.
My Dad commented that it feels like we are running a race against time, he can hear the clock ticking and when it stops..well we know what happens when it stops. The thing is, we are all running a race against time. The difference between my Dad and the rest of us is that he was given a tentative time stamp, he gets to watch the sand fall.
I wonder if we would have gone to the Grand Canyon or returned to Cannon Beach had he not been diagnosed with cancer. I hate to say it, but probably not. Why do we do that? Why do we wait until we feel like we are running out of life before we decide to live?
When I was a little girl, my family would take an annual vacation to Cannon Beach. The memories are faint, but cherished. I recall being dressed head to toe in my red Columbia rain gear, chasing the dog and finding hidden treasures in tide pools. We used to walk from Tolovana Inn to Haystack rock, singing 'the ants go marching' so I would forget the cold and the long walk atop my little legs.
I've outgrown my red rain suit and it is very possible that the walk is short. However, I look forward to discovering hidden treasures with my dad, to feel like that little girl again, to start opening this gift of time.
My Dad commented that it feels like we are running a race against time, he can hear the clock ticking and when it stops..well we know what happens when it stops. The thing is, we are all running a race against time. The difference between my Dad and the rest of us is that he was given a tentative time stamp, he gets to watch the sand fall.
I wonder if we would have gone to the Grand Canyon or returned to Cannon Beach had he not been diagnosed with cancer. I hate to say it, but probably not. Why do we do that? Why do we wait until we feel like we are running out of life before we decide to live?
Saturday, March 13, 2010
Waves: micro and radiation
My Dad went in for palliative radiation therapy on Wednesday, hoping to experience immediate pain relief for his bones. We were all optimistic. Even though the treatment would not cure his cancer, I allowed myself to picture him back on his bike, leading a ride, almost manic. When I was younger, the site of my dad in spandex and a bright yellow jersey would bring an embarrassed flush to my cheeks. Today, it would bring an indescribable sense of victory and happiness. I never would have thought, in a million years, that I would smile at the thought of my dad in his bike gear. Two days after radiation therapy, my dad is in his sweats, his spandex tucked away in his dresser, collecting dust. He is still in pain and does not have enough energy to run basic errands.
He called me this morning asking for a favor, would I pick him up a microwave and some dinner entrees? Sure Dad, anything. He explained that he no longer has energy to do the dishes. He needs something he can heat up and throw away. He hates microwave dinners, almost as much as he hates his cancer, but a guys gotta eat. We discussed his price range, color and size preference. We went along as though this was a totally normal conversation between father and daughter. We ignored the fact that he could not accompany me to the store, that he was purchasing a microwave for the first time in 61 years and that his new dinner menu would pale in comparison to the fresh stuff he liked to buy at Trader Joe's. We ignored it because we have to. For survival.
He called me this morning asking for a favor, would I pick him up a microwave and some dinner entrees? Sure Dad, anything. He explained that he no longer has energy to do the dishes. He needs something he can heat up and throw away. He hates microwave dinners, almost as much as he hates his cancer, but a guys gotta eat. We discussed his price range, color and size preference. We went along as though this was a totally normal conversation between father and daughter. We ignored the fact that he could not accompany me to the store, that he was purchasing a microwave for the first time in 61 years and that his new dinner menu would pale in comparison to the fresh stuff he liked to buy at Trader Joe's. We ignored it because we have to. For survival.
Monday, March 8, 2010
Introduction
When someone you love is diagnosed with a terminal disease, your life changes. I know more about small cell lung cancer, brain surgery, chemo therapy, radiation, pain, heartache, 4:30am phone calls from the ICU, the best remedies to reduce swollen eyes, clinical trials, FMLA, the 4th floor at Group Health, tough decision making and inner strength then a 28 year old should. I didn't choose this, it chose me. Well, it chose my Dad and I am sitting in the passenger seat with one hand on the steering wheel.
We were recently told that my Dad has months to live. The cancer has metastasized to his bones and he has multiple, new pulmonary tumors. I want to believe that he will have years, that he will see me get married someday and play with his grandchildren, that I can buy him a red velvet cupcake for his next birthday, that he will be there to celebrate my accomplishments and help me learn from my failures, that we don't have to cram his bucket list into a 6 month time frame.
What I want to believe and what I know are entirely different. I know that time with my Dad is severely limited. I hate his cancer, but I love him. Pending approval, I am taking a leave of absence. During this time, I plan on making memories. When he has taken his last breathe, I will look back at this blog and smile, even if tears are cascading down my face.
With that being said, welcome to A Recipe for Lemonade. I look forward to sharing the ingredients with you.
We were recently told that my Dad has months to live. The cancer has metastasized to his bones and he has multiple, new pulmonary tumors. I want to believe that he will have years, that he will see me get married someday and play with his grandchildren, that I can buy him a red velvet cupcake for his next birthday, that he will be there to celebrate my accomplishments and help me learn from my failures, that we don't have to cram his bucket list into a 6 month time frame.
What I want to believe and what I know are entirely different. I know that time with my Dad is severely limited. I hate his cancer, but I love him. Pending approval, I am taking a leave of absence. During this time, I plan on making memories. When he has taken his last breathe, I will look back at this blog and smile, even if tears are cascading down my face.
With that being said, welcome to A Recipe for Lemonade. I look forward to sharing the ingredients with you.
Subscribe to:
Posts (Atom)
