A busy day at Blogdom. I wanted to honor my sister before I got into the pragmatics of my health and treatment. Frankly she's much more interesting to write about and to know, but inquiring minds want to know more a well. Also, I've had some technical issues and this posting got delayed by more than a few days. But the success of my first post in this second phase signals a new era in my technical prowess.
So, what's up with my disease?
First off it returned faster than the Drs. expected, about 2-weeks. That signaled to the oncology team that they should abandon the middle course of therapy (methotrexate) and move to the large bore chemo I'm doing now. Originally, for this surprise round, I was to be in the hospital for as much as 60 days running, but that also changed late last week and I'm doing the balance of this segment as an out-patient (out Saturday) until the middle of November when this course is finished. At that point, when I'm determined to be in remission, they'll move directly to a bone marrow transplant while my blood and system are clean- the big show! That's the segment that will spell out how we've handled this little understood and illusive form of cancer. Cancer is a fluid disease and even the ones that are well understood take twists and turns that Drs. haven't seen, a testament I'm sure to to our uniqueness as individuals- mostly alike, but so different in crucial ways.
For this segment I've done well and feel very good, again my tolerance for the treatment is kind of at odds with the severity of what I have. So far, no bad nights, no nausea and the appetite and food eye of a teenager. Since I still have an immune system, I'm hitting the vending machine for all manor of junk food late at night- hey, I've got cancer- eat up.
I was out for 2 weeks and 2 days. MJ and I had our kids here for a long weekend at the end of the first week out of the hospital, her two and my two. What more can be said, we ate, drank and celebrated the release, we sat on the deck, we enjoyed the weather and the sunlight, we connected, we missed connections, we stumbled, we flew, we held hugs too long and some times eye contact was too short, we celebrated the potential of life and thought about the unspoken potential for the other.
That unspoken other is the elephant in the room, this idea of living and dying being so immediate. No matter what, and as it ought to, it colors and shapes all your actions. I Leap some days on the things I can control, remaking files so everything can be clearly understood, double checking insurance things, checking balances and looking at the 401-K to determine if I'm managing it right- you get stuck in a place of "is there enough" is it a 5-year plan or a 20- year plan? What happens first, extravagant dreams or practical planning? A distraction for sure, all this remaking and looking into, a sure sign that I'm running straight into the arms of fear and trying to do something with it that is loving.
But that's this disease, huge lessons every day, challenging your character, your beliefs, your will, your sense of self, your optimism, your legacy. and as a result the blessing; every day you get to think about who you are and why you're here.
Unless, of course your remaking your files.
More to come,
Arnie.
Friday, October 26, 2007
Ingrid
My sister has been here for nearly 2- weeks at no small inconvenience to herself. Her first time in Chicago, from what used to be a small town in Arizona west of Phoenix, Chicago has been both awe inspiring and bit overwhelming. But like a Goodwin, she's adaptable and once she got used to the visual pace of the place, the closeness of the buildings, the proximity to everything, she became more urban. More urban, for better or worse, I don't know, but very much like someone who takes what's dealt to them and makes the best of it, she's adapted to our life and pace. However, most of all she's shown up, fully present and ready to give her precious platelets to replace my sick replace and rebuild my sick marrow. She's my sister, she matches me perfectly and as they say she's "my blood."
And that's the real story. What we will do for our blood is not really known until we're asked. We don't get to choose our family, they're given to us warts and all. But when family calls, something inside us stirs, ancient, primal, instinctual, immutable.
Although only 4- years apart, our lives took on entirely different trajectories. She's a widow, married young, had 5-children like stair steps, a boy, followed by 2-girls, followed by 2-boys. I married late and apparently often, have 2-children and my oldest is a 20 something with little facial hair. My sister's oldest are in their 40's now. I moved, returning infrequently and she stayed in the area, living in the same house for 35 years, anchored by familiarity and memories. At 66 and retired, she and a couple of girl friends are seeking adventures on the open road with cross country trips to distant states important to each of them for various reasons.
She and her husband, Jerry, raised their family to be honest and loving and caring and funny and responsible and accountable to themselves and each other. Most stayed in the Phoenix area and they get together on a regular basis between kids, school and shifting and demanding jobs. I've never seen a family that takes care of each other better with humor, stories and great steaks done on my sisters fire pit on the back porch. The meals and laughs seem to come together without a plan, just some short phone calls and familiar pitching in of what each has to contribute and you've got a meal to die for sometime around 9 o'clock and your sides hurt from laughing and you don't want anything to stop. And that says more about my sister than I can ever say.
At this time in our lives our legacy is our children, it says more about how we've lived our lives, how we taught and practiced love and gratefulness and generosity, the value of work and contributing. Our children are a mirror of our discipline and love and conduct as parents; the truth about our character, I believe, is revealed ultimately through our children.
Ingrid can be proud.
So, what does it mean to me to be cared for by my sister. She's flown 1400 miles, endured the ramp-up pain of over-building her red cells and been harvested for hours in the chemo lab at UCH. All for me, all for blood and all because what seems like distance between, is just waiting to be shortened by need; a primal drive to protect a loved one. We're family, sister and brother and like so many times before she's there, watching my back, quietly wanting the best for me and finding a way to, as always, deliver what's needed. Thanks.
Arnie
And that's the real story. What we will do for our blood is not really known until we're asked. We don't get to choose our family, they're given to us warts and all. But when family calls, something inside us stirs, ancient, primal, instinctual, immutable.
Although only 4- years apart, our lives took on entirely different trajectories. She's a widow, married young, had 5-children like stair steps, a boy, followed by 2-girls, followed by 2-boys. I married late and apparently often, have 2-children and my oldest is a 20 something with little facial hair. My sister's oldest are in their 40's now. I moved, returning infrequently and she stayed in the area, living in the same house for 35 years, anchored by familiarity and memories. At 66 and retired, she and a couple of girl friends are seeking adventures on the open road with cross country trips to distant states important to each of them for various reasons.
She and her husband, Jerry, raised their family to be honest and loving and caring and funny and responsible and accountable to themselves and each other. Most stayed in the Phoenix area and they get together on a regular basis between kids, school and shifting and demanding jobs. I've never seen a family that takes care of each other better with humor, stories and great steaks done on my sisters fire pit on the back porch. The meals and laughs seem to come together without a plan, just some short phone calls and familiar pitching in of what each has to contribute and you've got a meal to die for sometime around 9 o'clock and your sides hurt from laughing and you don't want anything to stop. And that says more about my sister than I can ever say.
At this time in our lives our legacy is our children, it says more about how we've lived our lives, how we taught and practiced love and gratefulness and generosity, the value of work and contributing. Our children are a mirror of our discipline and love and conduct as parents; the truth about our character, I believe, is revealed ultimately through our children.
Ingrid can be proud.
So, what does it mean to me to be cared for by my sister. She's flown 1400 miles, endured the ramp-up pain of over-building her red cells and been harvested for hours in the chemo lab at UCH. All for me, all for blood and all because what seems like distance between, is just waiting to be shortened by need; a primal drive to protect a loved one. We're family, sister and brother and like so many times before she's there, watching my back, quietly wanting the best for me and finding a way to, as always, deliver what's needed. Thanks.
Arnie
Saturday, October 6, 2007
What Counts
I haven't written in a few days. The inevitable end of Phase I has been with me since Wednesday of this week as my med team simply watched my daily lab numbers move towards normal. Cancer treatment runs on a calendar, it's probably the only time in my life that I've adhered so rigidly to one, but as it turns out I'm right on schedule. I entered UCH on the 09/06, I'm departing on 10/06, the end of phase I.
I'll do this next round of preparation from home receiving treatment as an out patient every other week until December. It will be another heavily calendared event accompanied by a very strict regime of oral medication designed to rid my body of chemo in a precise number of hours after each infusion. I assume that some of this medication will fortify other parts of my system against chemo, while making others more receptive. It will take a few days to become familiar with each.
However, that's not until the 15th. Until then I have this week and weekend off to readjust to being in the larger world and my new home. Zach, Erica and Kate come for a visit next weekend and my sister will come in on the 14th. She's my donor and we'll spend the next week together as out patients and tourists. She's never spent any time in the city so this is going to be fun. I plan to do everything that a tourist would do- from double decker busses to observation decks, to lake tours. Given that she thinks that Phoenix traffic is bad, I believe I'll just take her on a few expressway trips as a point of contrast. Any way MJ and I plan to have some fun- it will be wonderful to be home and perhaps become the "big lug" in the living room. Actually, there's little I'd like better than a "honey-do" list.
Lastly, this has been an amazing experience. Writing these entries, talking/writing to people I haven't seen in years, having a steady round of friends be with me on a nearly daily basis bringing food, books, cd's, dvd's, but most of all themselves, fully alive, funny, interested and generous in spirit and time. Feeling loved is one of the most important emotions we can have in our lives. In times like this it probably is more important than the complicated chemistry and its rigid application, while it may make you better, it doesn't fill your soul and heart with love and a sense that you matter. That's what this experience has done for me. Cancer is a very focusing event. You can let it be an event driven by fear or elevated by love. Mine has been the latter and this is a small and very inadequate thank you for bringing me so much, for telling me directly that I matter and have mattered, for being honest and open and full of the spirit of life and the elixir of love.
Thank you, we'll be talking in a few weeks.
Arnie
I'll do this next round of preparation from home receiving treatment as an out patient every other week until December. It will be another heavily calendared event accompanied by a very strict regime of oral medication designed to rid my body of chemo in a precise number of hours after each infusion. I assume that some of this medication will fortify other parts of my system against chemo, while making others more receptive. It will take a few days to become familiar with each.
However, that's not until the 15th. Until then I have this week and weekend off to readjust to being in the larger world and my new home. Zach, Erica and Kate come for a visit next weekend and my sister will come in on the 14th. She's my donor and we'll spend the next week together as out patients and tourists. She's never spent any time in the city so this is going to be fun. I plan to do everything that a tourist would do- from double decker busses to observation decks, to lake tours. Given that she thinks that Phoenix traffic is bad, I believe I'll just take her on a few expressway trips as a point of contrast. Any way MJ and I plan to have some fun- it will be wonderful to be home and perhaps become the "big lug" in the living room. Actually, there's little I'd like better than a "honey-do" list.
Lastly, this has been an amazing experience. Writing these entries, talking/writing to people I haven't seen in years, having a steady round of friends be with me on a nearly daily basis bringing food, books, cd's, dvd's, but most of all themselves, fully alive, funny, interested and generous in spirit and time. Feeling loved is one of the most important emotions we can have in our lives. In times like this it probably is more important than the complicated chemistry and its rigid application, while it may make you better, it doesn't fill your soul and heart with love and a sense that you matter. That's what this experience has done for me. Cancer is a very focusing event. You can let it be an event driven by fear or elevated by love. Mine has been the latter and this is a small and very inadequate thank you for bringing me so much, for telling me directly that I matter and have mattered, for being honest and open and full of the spirit of life and the elixir of love.
Thank you, we'll be talking in a few weeks.
Arnie
Monday, October 1, 2007
First Born
The 2nd of October is the birthday of my first born and only son. He came to us, Vicki and me, 24 years ago with all the circumstance and drama a first baby brings. Dr Ettner brought Zachary into this world at St. Francis Hospital in Evanston after Vicki struggled at home for many, many hours. We had hoped to do it with a mid-wife and have Zach at home, but progress was slow and at some point we had to modify our plan and get to the hospital. Dr Ettner has taken care of my family for 25 years, he helped me comprehend my current diagnosis and has offered his brains and wit to the choices required around this disease. He saw Zach and Vicki and me through a scary fever week when Zach was 2 and got his baby shots while harboring the beginnings of a cold virus. The subsequent fever was high and tight and relentless for more than a week. I don't believe I've ever been more afraid for him or myself. Ever.
Today, of course, he is a vision of youth. All sinew and muscle, beautiful skin, long fingered artistic hands, smart eyes, stunning wit, open smile and youthful gate. He has the temperament and angst of an artist and the intellectual swagger of budding scholar, or at least of someone who did exceedingly well in a challenging school. It was in this most of competitive environments that he learned to trust himself. He learned the value of disciplined effort, he learned how to stretch all his skills and accept challenging outcomes. He did this from his boot straps, because while very smart, his previous specialty was touching the line and moving on. But that was then and he was young, after a year break in school volunteering with Americorp in West Virginia, he returned to school with vigor and respect and he came to find some things out about himself. And he did.
He is 24 today and standing at the threshold of his life with options and opportunity and curiosity and endless potential for doing well for himself and I believe for a world that desperately needs people like he could become. It is from here, a position of strength and potential that character and grace and generosity are put to the test and he has to find his own way to what those words mean and what it means to act on them. He has the ability to reach deep inside himself and it will be from doing that that he defines his life for himself.
For he is not his past or his fine and rare accomplishments. He's today, tomorrow and the day after- he's a future, he's the potential and promise of a life to be lived and shared and have the potential wrung out of it and spread like seed to others.
He's my first born and my only son and because of that carries all the hopes and dreams and unfinished business of a father's love with him.
Happy birthday my son.
Dad
Today, of course, he is a vision of youth. All sinew and muscle, beautiful skin, long fingered artistic hands, smart eyes, stunning wit, open smile and youthful gate. He has the temperament and angst of an artist and the intellectual swagger of budding scholar, or at least of someone who did exceedingly well in a challenging school. It was in this most of competitive environments that he learned to trust himself. He learned the value of disciplined effort, he learned how to stretch all his skills and accept challenging outcomes. He did this from his boot straps, because while very smart, his previous specialty was touching the line and moving on. But that was then and he was young, after a year break in school volunteering with Americorp in West Virginia, he returned to school with vigor and respect and he came to find some things out about himself. And he did.
He is 24 today and standing at the threshold of his life with options and opportunity and curiosity and endless potential for doing well for himself and I believe for a world that desperately needs people like he could become. It is from here, a position of strength and potential that character and grace and generosity are put to the test and he has to find his own way to what those words mean and what it means to act on them. He has the ability to reach deep inside himself and it will be from doing that that he defines his life for himself.
For he is not his past or his fine and rare accomplishments. He's today, tomorrow and the day after- he's a future, he's the potential and promise of a life to be lived and shared and have the potential wrung out of it and spread like seed to others.
He's my first born and my only son and because of that carries all the hopes and dreams and unfinished business of a father's love with him.
Happy birthday my son.
Dad
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