Wednesday, August 28, 2013
Thursday, March 10, 2011
In Too Deep
I saw my daughter swimming in the ocean today. She went so far out it looked like she was drifting. Like any parent I balanced my concern against my trust. My trust in her, her self knowledge, her confidence, her judgement. She cried for help so we threw her a lifeline. But I still couldn't tell if she was making her way in, holding steady, or drifting out to sea. Her Mother and I argued about whether we should have let her go out that far, whether the lifeline was enough. Should we go in after her? I hope she's still there.
Sunday, February 20, 2011
Lauren and Lauren
By the summer of 1993 Jessica had completed her intensive chemotherapy and was on to her maintenance therapy. She still received chemotherapy, just at a much lower dose which allowed her hair to grow back. It came back streaked with blond and as it got longer it became curly. People used to comment about how lovely her hair was and Sandra and I joked with our friends that for tens of thousands of dollars of chemotherapy, they could have hair like that too.
My hair was growing longer too. I suppose it was my way of rebelling. I was playing in a band with Spencer's nurse Connie and her husband John. Connie on drums, John on guitar and me on bass. I would go to their house twice a week to practice and we used to play gigs all over the area. It was fun, a good distraction from the reality we were faced with.
Lauren was born in July at Chestnut Hill Hospital. Sandra's labor with her was more like Jessica's, long. We went in, Sandra did not appear to be progressing, so they sent us out to walk around Chestnut Hill. We eventually went back in and they set Sandra up in one of their new "birthing suites". The doctor delivered Lauren and I asked if I could cut the cord. I didn't get to cut Jessica's (I struggled not to pass out!), but the doctor who delivered Spencer introduced me to the idea. Anyway, this doctor said he wasn't sure as he had set up a "sterile field". Anyone who has witnessed a child being born knows there is not much sterile going on down there, I pointed that out to him and he agreed to let me do it. I got to cut James' umbilical cord too when he was born four years later.
We were still looking for houses and not getting much action on selling our house in Manayunk. We were nervous about bringing Lauren back to the house in Manayunk, but we really didn't have a choice. It was our house and we didn't have the money to rent somewhere else. We spent a lot of time that summer at the shore and Sandra recalls having to go back and forth as her brother Lauren was being hospitalized on a regular basis.
My hair was growing longer too. I suppose it was my way of rebelling. I was playing in a band with Spencer's nurse Connie and her husband John. Connie on drums, John on guitar and me on bass. I would go to their house twice a week to practice and we used to play gigs all over the area. It was fun, a good distraction from the reality we were faced with.
My girls.
We were still looking for houses and not getting much action on selling our house in Manayunk. We were nervous about bringing Lauren back to the house in Manayunk, but we really didn't have a choice. It was our house and we didn't have the money to rent somewhere else. We spent a lot of time that summer at the shore and Sandra recalls having to go back and forth as her brother Lauren was being hospitalized on a regular basis.
Thursday, February 17, 2011
With a Little Help From My Friends
Here is a tribute I wrote to my friends. I wrote it about ten years ago.
"Men are stereotyped as the strong, silent types. You know, not exactly forthcoming with information, bottled up emotions, men of action not words. I am one of the worst in this regard, just ask my wife. But I have experienced the love, compassion and humanity of a group of men that causes my emotions to swell even now, eleven years later.
I moved to my wife Sandra's native Philadelphia shortly after our graduation from college. We had married there and decided to settle. Although I was familiar with the city, I had few friends there. Most of our friends were old college buddies of Sandra's, a great group of people who I bonded with immediately and who remain friends to this day. Our daughter Jessica was in nursery school, we both had good jobs, we had bought our first house and our son Spencer was born. Things couldn't have been better, we were living the American dream. Then Spencer got sick. What we first expected to be chicken pox turned out to be non-Hodgkin's lymphoma. After thirteen months, four chemotherapy protocols, radiation treatment, a struggle for life caused by a nicked artery while installing a broviac catheter and an attempted bone marrow transplant, Spencer died. At 35, I learned what it means to have a broken heart. My wife, my friends and I struggled to make sense of it all and nine months later, Jessica had a malignant tumor removed from her neck and was diagnosed with Acute Lymphocytic Leukemia. Back to Children's Hospital for more chemotherapy, intensive at first, then maintenance therapy. Along with Jessica's medical therapy, Sandra and I received grief counseling and I started to get individual therapy to help me deal with my losses. Not only was my son dead, but now all sense of security and justice.
Sandra was struggling more than me as she lost her Irish twin brother around the same time. She had a core group of girlfriends who listened, comforted, and cushioned her with their presence. Sandra and I have a strong marriage. We comforted each other as best we could, but when you are both suffering, it's hard to lift the spirits of your spouse. And I talked... I talked a lot, to friends and counselors. But it was the action of my friends that saved my faith in humanity and demonstrated love and compassion. Take the suits for instance. I was a young architect and the only suit I owned was the one I was married in. Over a period of weeks, my guy friends were showing up at my house with hand-me-down suits that didn't fit them anymore. Could I use them? Some were hand me downs, others were brand new and at the time I had no idea that this was a coordinated effort. Then there was the shore. Some of our best friends are siblings who owned a shore house together. The Heavens were given our own key and bedroom. We shared seven summers of healing there. And the sporting events I attended with my pals like the Eastern Regional Finals where Duke beat Kentucky 104-103 in overtime (claimed by some to be the greatest college basketball game ever), seeing Michael Jordan and Charles Barkley in a playoff game at the Spectrum and the Phillies playing the Braves in the 1993 National League Championship series on a steamy summer night at the Vet. Memorable events that were predicated with, "we've got an extra ticket, can you make it?". I don't know for sure who initiated these responses from my friends, but I have suspicions. There definitely was a core group of men who made me a part of their family, and they prompted others to action.
We have all moved on since those tragic, yet glorious days. Jessica is cured and is starting to look at colleges. We have two other children, Lauren and James. We are in a new house and new jobs. But most of our friends still live within the metropolitan area. We see each other occasionally, attend important family events and are busy with the daily routine of making money, raising our families and trying to enjoy life. It seems mundane compared to the old days, but creates time for reflection. My friends didn't just listen to me during the most tragic time of my life, they picked me up by the elbows and carried me. For that I will be forever grateful and humbled.
I use the poem "If" by Rudyard Kipling as a compass for my behavior as a man, and when my son James was born I framed a copy and put it in his room. Perhaps it is hokey in this age, maybe the sentiments are a bit simplistic or dated; but it speaks to me. My friends have shown to me that sometimes, actions can speak louder than words."
"Men are stereotyped as the strong, silent types. You know, not exactly forthcoming with information, bottled up emotions, men of action not words. I am one of the worst in this regard, just ask my wife. But I have experienced the love, compassion and humanity of a group of men that causes my emotions to swell even now, eleven years later.
I moved to my wife Sandra's native Philadelphia shortly after our graduation from college. We had married there and decided to settle. Although I was familiar with the city, I had few friends there. Most of our friends were old college buddies of Sandra's, a great group of people who I bonded with immediately and who remain friends to this day. Our daughter Jessica was in nursery school, we both had good jobs, we had bought our first house and our son Spencer was born. Things couldn't have been better, we were living the American dream. Then Spencer got sick. What we first expected to be chicken pox turned out to be non-Hodgkin's lymphoma. After thirteen months, four chemotherapy protocols, radiation treatment, a struggle for life caused by a nicked artery while installing a broviac catheter and an attempted bone marrow transplant, Spencer died. At 35, I learned what it means to have a broken heart. My wife, my friends and I struggled to make sense of it all and nine months later, Jessica had a malignant tumor removed from her neck and was diagnosed with Acute Lymphocytic Leukemia. Back to Children's Hospital for more chemotherapy, intensive at first, then maintenance therapy. Along with Jessica's medical therapy, Sandra and I received grief counseling and I started to get individual therapy to help me deal with my losses. Not only was my son dead, but now all sense of security and justice.
Sandra was struggling more than me as she lost her Irish twin brother around the same time. She had a core group of girlfriends who listened, comforted, and cushioned her with their presence. Sandra and I have a strong marriage. We comforted each other as best we could, but when you are both suffering, it's hard to lift the spirits of your spouse. And I talked... I talked a lot, to friends and counselors. But it was the action of my friends that saved my faith in humanity and demonstrated love and compassion. Take the suits for instance. I was a young architect and the only suit I owned was the one I was married in. Over a period of weeks, my guy friends were showing up at my house with hand-me-down suits that didn't fit them anymore. Could I use them? Some were hand me downs, others were brand new and at the time I had no idea that this was a coordinated effort. Then there was the shore. Some of our best friends are siblings who owned a shore house together. The Heavens were given our own key and bedroom. We shared seven summers of healing there. And the sporting events I attended with my pals like the Eastern Regional Finals where Duke beat Kentucky 104-103 in overtime (claimed by some to be the greatest college basketball game ever), seeing Michael Jordan and Charles Barkley in a playoff game at the Spectrum and the Phillies playing the Braves in the 1993 National League Championship series on a steamy summer night at the Vet. Memorable events that were predicated with, "we've got an extra ticket, can you make it?". I don't know for sure who initiated these responses from my friends, but I have suspicions. There definitely was a core group of men who made me a part of their family, and they prompted others to action.
We have all moved on since those tragic, yet glorious days. Jessica is cured and is starting to look at colleges. We have two other children, Lauren and James. We are in a new house and new jobs. But most of our friends still live within the metropolitan area. We see each other occasionally, attend important family events and are busy with the daily routine of making money, raising our families and trying to enjoy life. It seems mundane compared to the old days, but creates time for reflection. My friends didn't just listen to me during the most tragic time of my life, they picked me up by the elbows and carried me. For that I will be forever grateful and humbled.
I use the poem "If" by Rudyard Kipling as a compass for my behavior as a man, and when my son James was born I framed a copy and put it in his room. Perhaps it is hokey in this age, maybe the sentiments are a bit simplistic or dated; but it speaks to me. My friends have shown to me that sometimes, actions can speak louder than words."
Tuesday, February 15, 2011
The Mind and Depression
Circumstances were starting to take their toll. Spencer's death combined with Jessica and Lauren's illnesses were affecting us psychologically. Sandra exercised a lot, running specifically. Spencer's illness was when she started running long distances. She also talked with her girl friends, she discussed her fears and worries while I kept mine more to myself. I had a lot of great friends that kept me occupied. I will write more about them later, but we did not discuss things, we just enjoyed each others company.
After Spencer died I spoke to my doctor about anti-depressants. He said that my depression was situational, caused by Spencer's death, and not chronic. Prozac, Zoloft, and other anti-depressants are for chronic depression. He said if I wanted to try them, I could, he would prescribe me a low dose. I took him up on his offer, but he was right. I found that they just flattened me. They took away the lows, but they took away the highs too. Left me in a neutral zone that I found even worse.
After Jessica got sick and I was back off the anti-depressants, I used to have what I call "Daymares". I was working downtown at 11th and Arch, right at the edge of Chinatown and only blocks from the Reading Terminal Market. I worked on the 11th floor and I remember waiting for the elevator by myself and imagining the elevator doors opening, a man stepping out of the elevator, raising a gun to my head and pulling the trigger. Also, while walking down the street to the market, I would imagine someone coming up behind me and slitting my throat. The image was so real that I gasped for breath. These instances scared me, but they also fascinated me. Why was my mind doing this? What purpose did it serve? The mind and body are beautiful machines and I wondered what mine was doing. We attributed it to a loss of control, a feeling of helplessness.
I thought that it might be helpful to see a psychologist. I was referred to one downtown, a rather attractive woman actually. Our first session was a joint one and Sandra said she preferred I work with a male psychologist. Party pooper. The sessions I had were helpful, if anything it got me to open up. I talked about a lot of things and we even got into some deep stuff about my youth and my relationship with my mother. Deep stuff that made me cry, but not specifically about the kids and their illnesses. Not that I expected anything different. I know the mind is a puzzle and sometimes you just have to push things around to see how they fit. After a while though, I asked him if there was a plan to this therapy. He said there was but didn't elaborate and after a while I really felt there wasn't and stopped going.
Sandra's uncle died and we went to his funeral one sunny Saturday. He was kind of a prickly guy but had a lot of endearing eccentricities. We were sitting in Gladwyne Presbyterian church, the windows were open, and people were getting up and telling these anecdotes about Uncle Bob and I started to cry. I tried my best to keep it to myself but I couldn't stop. Afterward, everyone said that they never realized I was so close to Uncle Bob. I wasn't, my tears were not for him.
Years later, I tried to get Sandra to try therapy. She was very reluctant, but I eventually convinced her. He met with her first, then he wanted to meet with us together. I walked into his office and the walls were covered with paintings of crying clowns. Fucking whack job. He then proceeded to say all sorts of off the wall stuff about Sandra, to which I replied, "do you even know my wife?". We left and I never made her go back.
These days we handle stress by running. We probably drink more than we should, but that seems historically to be a rather universal reprieve from life's trials and tribulations. Something we do our best to keep in control though.
After Spencer died I spoke to my doctor about anti-depressants. He said that my depression was situational, caused by Spencer's death, and not chronic. Prozac, Zoloft, and other anti-depressants are for chronic depression. He said if I wanted to try them, I could, he would prescribe me a low dose. I took him up on his offer, but he was right. I found that they just flattened me. They took away the lows, but they took away the highs too. Left me in a neutral zone that I found even worse.
After Jessica got sick and I was back off the anti-depressants, I used to have what I call "Daymares". I was working downtown at 11th and Arch, right at the edge of Chinatown and only blocks from the Reading Terminal Market. I worked on the 11th floor and I remember waiting for the elevator by myself and imagining the elevator doors opening, a man stepping out of the elevator, raising a gun to my head and pulling the trigger. Also, while walking down the street to the market, I would imagine someone coming up behind me and slitting my throat. The image was so real that I gasped for breath. These instances scared me, but they also fascinated me. Why was my mind doing this? What purpose did it serve? The mind and body are beautiful machines and I wondered what mine was doing. We attributed it to a loss of control, a feeling of helplessness.
I thought that it might be helpful to see a psychologist. I was referred to one downtown, a rather attractive woman actually. Our first session was a joint one and Sandra said she preferred I work with a male psychologist. Party pooper. The sessions I had were helpful, if anything it got me to open up. I talked about a lot of things and we even got into some deep stuff about my youth and my relationship with my mother. Deep stuff that made me cry, but not specifically about the kids and their illnesses. Not that I expected anything different. I know the mind is a puzzle and sometimes you just have to push things around to see how they fit. After a while though, I asked him if there was a plan to this therapy. He said there was but didn't elaborate and after a while I really felt there wasn't and stopped going.
Sandra's uncle died and we went to his funeral one sunny Saturday. He was kind of a prickly guy but had a lot of endearing eccentricities. We were sitting in Gladwyne Presbyterian church, the windows were open, and people were getting up and telling these anecdotes about Uncle Bob and I started to cry. I tried my best to keep it to myself but I couldn't stop. Afterward, everyone said that they never realized I was so close to Uncle Bob. I wasn't, my tears were not for him.
Years later, I tried to get Sandra to try therapy. She was very reluctant, but I eventually convinced her. He met with her first, then he wanted to meet with us together. I walked into his office and the walls were covered with paintings of crying clowns. Fucking whack job. He then proceeded to say all sorts of off the wall stuff about Sandra, to which I replied, "do you even know my wife?". We left and I never made her go back.
These days we handle stress by running. We probably drink more than we should, but that seems historically to be a rather universal reprieve from life's trials and tribulations. Something we do our best to keep in control though.
Monday, February 14, 2011
Runnin' with the Devil
Jessica was going through her intensive phase of chemotherapy, so while her treatment was not as intensive as Spencer's, she still got sick, needed blood transfusions, etc. Sandra was pregnant with Lauren, we knew her sex as we had gone through all the high risk pregnancy stuff. We were actively looking for a house. We had no proof that there was anything wrong with our house, but we were not comfortable staying there. We got rid of our water bed because we feared the water was amplifying any waves coming off the electric heater and might affect Lauren in utero. We were paranoid.
Sandra's brother Lauren was getting more ill too. We knew he was dealing with a malignancy of his own, but now it was getting critical. He was spending more and more time in the hospital. Lauren was Sandra's "Irish twin", born with in a year of each other, and her closest sibling.
The staff at CHOP offered us a wish through the Make A Wish foundation. Something they wanted to offer to Spencer, but never got the time. We picked a trip to Orlando. We arrived in Orlando and went to pick up our rental car. I decided at the last minute that we wanted to have a convertible and asked if it was possible. They asked if we had a lot of baggage and we said no, which was a lie. We had bags for the three of us and I had brought my golf clubs. They gave us a Ford Mustang convertible. These were the days when Mustangs were compact cars and there was no trunk room and the back seat was tiny. We made it work though. We jammed the clubs and two bags in the trunk and put the third bag in the back seat with Jessica.
We stayed at Walt Disney World, in a special compound with our own house that had over sized features to make it look like a story book house. Inside though we had a full kitchen, HC accessible bathroom with a roll-in shower and a refrigerator stuffed with snacks. Not that we needed a kitchen, there was a community building where you could get breakfast and lunch, and both lunch and dinner was available through vouchers in the Magic Kingdom or Epcot Center. Characters were all over the place on our compound too. So you didn't have to seek them out in the parks, they came to us. We spent one day each at the Disney resorts, as well as a day each at Universal, SeaWorld and a water park called Wet and Wild which Sandra renamed Wet and Splashy. Jessica wanted to play the games of chance, which Sandra and I hate, but we agreed to play a couple. The last one we played was the one where you throw softballs into the milk cans. We got three balls, one each. Jess missed, I missed, Sandra nails it. To which she exclaims "Oh, shit". We won! Jessica picked this huge, purple Tasmanian Devil. Three feet high and two feet wide. We carried him around for the rest of the day.
As much fun as we had in Orlando, we also wanted to spend a couple of days relaxing too. So we spent our last two days in Cocoa Beach, staying in a hotel on the beach and relaxing in the pool. We had a great drive over there, in the convertible, top down, beautiful day, radio blasting, sunglasses on, Jess and the Tasmanian Devil buckled up in the back seat.
Sandra's brother Lauren was getting more ill too. We knew he was dealing with a malignancy of his own, but now it was getting critical. He was spending more and more time in the hospital. Lauren was Sandra's "Irish twin", born with in a year of each other, and her closest sibling.
The staff at CHOP offered us a wish through the Make A Wish foundation. Something they wanted to offer to Spencer, but never got the time. We picked a trip to Orlando. We arrived in Orlando and went to pick up our rental car. I decided at the last minute that we wanted to have a convertible and asked if it was possible. They asked if we had a lot of baggage and we said no, which was a lie. We had bags for the three of us and I had brought my golf clubs. They gave us a Ford Mustang convertible. These were the days when Mustangs were compact cars and there was no trunk room and the back seat was tiny. We made it work though. We jammed the clubs and two bags in the trunk and put the third bag in the back seat with Jessica.
We stayed at Walt Disney World, in a special compound with our own house that had over sized features to make it look like a story book house. Inside though we had a full kitchen, HC accessible bathroom with a roll-in shower and a refrigerator stuffed with snacks. Not that we needed a kitchen, there was a community building where you could get breakfast and lunch, and both lunch and dinner was available through vouchers in the Magic Kingdom or Epcot Center. Characters were all over the place on our compound too. So you didn't have to seek them out in the parks, they came to us. We spent one day each at the Disney resorts, as well as a day each at Universal, SeaWorld and a water park called Wet and Wild which Sandra renamed Wet and Splashy. Jessica wanted to play the games of chance, which Sandra and I hate, but we agreed to play a couple. The last one we played was the one where you throw softballs into the milk cans. We got three balls, one each. Jess missed, I missed, Sandra nails it. To which she exclaims "Oh, shit". We won! Jessica picked this huge, purple Tasmanian Devil. Three feet high and two feet wide. We carried him around for the rest of the day.
As much fun as we had in Orlando, we also wanted to spend a couple of days relaxing too. So we spent our last two days in Cocoa Beach, staying in a hotel on the beach and relaxing in the pool. We had a great drive over there, in the convertible, top down, beautiful day, radio blasting, sunglasses on, Jess and the Tasmanian Devil buckled up in the back seat.
Sunday, February 13, 2011
Living with Cancer
Jessica was going to first grade at the John Story Jenks school in Chestnut Hill. It is a public K-8 school in a nice neighborhood. She continued with school, wearing a bandanna to cover her hair loss, and students and teachers alike were supportive. One of her teachers gave her a stuffed ostrich which she named Suzy and this year is the first year Jessica hasn't taken her with her. Suzy is living in Jessica's room upstairs, getting a little to old to travel I assume.
We put our house on the market. We don't know what caused these malignancies, but we figured it was either genetics or environment and we couldn't change our genetics. It's a shame, we had just taken the equity out of our house so we weren't likely to make any money on the sale. We started looking at neighborhoods to see where we might like to live. We looked at Narberth, Media, Swarthmore, Doylestown, Springfield, Oreland and Glenside. I worked in Center City and Sandra in the Northeast, so we focused on the northern suburbs. Doylestown seemed too far out and we started looking a house in the Springfield, Oreland, Glenside areas.
Jessica continued to go to clinic weekly for check-ups, chemotherapy and the occasional spinal tap. Dr. Bruce remained her oncologist and we started making a new set of friends in the outpatient clinic vs. Spencer's inpatient staff. Jessica would get electrocardiograms occasionally as her chemotherapy had side effects that could affect her heart. Nothing was ever detected. She never fully lost her hair but is was very thin so she continued to wear the bandanna and I am sure the chemo upset her stomach, but in general she was strong. I know we went camping with Connie and John to Land's End State Park and she hiked with us. She also went skiing with us in Vail. In fact, we had a scare there. We put Jess in ski school with a bunch of other young people, Sandra and I had a great day skiing and at the end of the day we went to rendezvous with them and they were delayed due to an injury. Sandra and I fretted that we shouldn't have taken her skiing, or at least shouldn't have put her in ski school. Turned out, it wasn't her. She had a great day skiing too.
Although Jessica's treatments seemed easy compared to Spencer's, we always were on pins and needles. Would she start spiking fevers? Where did that bruise come from? When will the other shoe drop?
Jessica with her cousins Lexi and Leah. Lexi is Spencer's age.
We put our house on the market. We don't know what caused these malignancies, but we figured it was either genetics or environment and we couldn't change our genetics. It's a shame, we had just taken the equity out of our house so we weren't likely to make any money on the sale. We started looking at neighborhoods to see where we might like to live. We looked at Narberth, Media, Swarthmore, Doylestown, Springfield, Oreland and Glenside. I worked in Center City and Sandra in the Northeast, so we focused on the northern suburbs. Doylestown seemed too far out and we started looking a house in the Springfield, Oreland, Glenside areas.
Jessica continued to go to clinic weekly for check-ups, chemotherapy and the occasional spinal tap. Dr. Bruce remained her oncologist and we started making a new set of friends in the outpatient clinic vs. Spencer's inpatient staff. Jessica would get electrocardiograms occasionally as her chemotherapy had side effects that could affect her heart. Nothing was ever detected. She never fully lost her hair but is was very thin so she continued to wear the bandanna and I am sure the chemo upset her stomach, but in general she was strong. I know we went camping with Connie and John to Land's End State Park and she hiked with us. She also went skiing with us in Vail. In fact, we had a scare there. We put Jess in ski school with a bunch of other young people, Sandra and I had a great day skiing and at the end of the day we went to rendezvous with them and they were delayed due to an injury. Sandra and I fretted that we shouldn't have taken her skiing, or at least shouldn't have put her in ski school. Turned out, it wasn't her. She had a great day skiing too.
Although Jessica's treatments seemed easy compared to Spencer's, we always were on pins and needles. Would she start spiking fevers? Where did that bruise come from? When will the other shoe drop?
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