Well the health care system may be messed up, doctors may still have huge egos and there may be no simple solution to our complaints, but I have to give kudos to the hospital for wanting to know, in painstaking detail, exactly how bad our experience was. I honestly believe that the Quality Control Chief is invested in learning from us and while publicly tarring and feathering Dad's oncologist may not be an option, I really do think our letter has made a difference.
Dad would like to know we're using his experience to help ease the suffering of other patients. At least our anger can be directed at something constructive, rather than vindictive.
But it doesn't make it hurt any less...
Wednesday, November 28, 2007
Sunday, November 25, 2007
The Empty Stocking
So this weekend was full of taking down boxes from the attic, putting up Christmas lights and assembling the tree. I stayed away as much as I could. I know I need to be more helpful because Christmas decorations in this house are no small task, but the whole thing feels like a "What's Wrong With This Picture?" activity. I honestly thought we'd at least have one more Christmas, even given the hospital stays and the scan reports of doom. And so I'm just not ready to do this whole season without my father.
Our stockings are already hung on the mantel, including Dad's. We're not quite sure what to do with it. But it just epitomizes all that is wrong with feeling festive when the grand master of all festivities isn't here to take part.
Thanksgiving was hard enough but Christmas is going to wreck me.
Our stockings are already hung on the mantel, including Dad's. We're not quite sure what to do with it. But it just epitomizes all that is wrong with feeling festive when the grand master of all festivities isn't here to take part.
Thanksgiving was hard enough but Christmas is going to wreck me.
Bad Medicine
One aspect of my father's illness that I haven't really delved into is the unethical, unprofessional, utterly appalling manner in which his own oncologist treated him. While I won't go into details about the hospital or doctor, let's just say that this particular locale has received awards for the cancer care it provides. So you'd think they'd have that whole "care" part down pat.
Alas that was not to be the case. The doctors at said hospital are obviously brilliant and know their sh*t when it comes to cancer, treatment options, clinical trials, etc. But there's something distinctly wrong with an oncologist who knows his patient is dying and rather than help the patient with end-of-life issues, provide supportive care and just be an all-around human being, he instead washes his hands of the situation. As soon as it became clear that my dad's cancer was one of the most aggressive types out there (this information came thanks to his very helpful radiation oncologist), "Dr. No-Good" distanced himself as much as possible from our family.
While Dad spent a good part of the month of August in the hospital for uncontrollable pain and nausea, this particular doctor was still cheerleading Dad along, telling him that he still had options and assuring us that when he felt it was time to discuss hospice, he would let us know. Meanwhile he's telling my mom in the hallway that Dad didn't have much time left and that he would more than likely be discharged into hospice. Why couldn't he tell Dad this? Apparently Dad "wasn't ready." Well pardon me, but isn't it part of the oncologist's job description to help make him ready?
It took Dad's palliative care nurse to sit us down and tell us that we were nearing the end of this journey and recommend that we say whatever needed to be said, and soon. Less than twelve hours later, he was in a coma. When the nurse called Dr. No-Good to tell him of this significant turn for the worse, his response was "Well, it's time we refrain from heroic measures." No sh*t.
I firmly believe that Dad hung on as long and as hard as he did because he truly wasn't ready. And I blame his doctor for that. Of course the prospect of facing one's own death has got to be terrifying - who is ever really ready? But had we had more time to grapple with it, had my father known what was about to happen, I know he would have done some things differently. As would have I.
When the dust settled and the relatives left town, our family sat down and penned a pretty damning letter to the hospital. We didn't mince words and we did name names. It must have gotten their attention, because a few days later, the CEO of the hospital called. He assured my mom that they were already making changes based on some of our observations. And then he told mom that someone would be calling to follow up.
And someone did. The Vice-President in charge of Quality Control, in fact. And we have a meeting with him Tuesday morning. Hell yes.
I know our anger had to be directed somewhere and I know Dad didn't like us criticizing the doctor he trusted with his life. But that's just it...he trusted this doctor and this doctor let him down. And as someone headed into the medical profession, I find it quite disturbing that an institution with multiple accolades for its cancer center is so messed up.
So I'll keep you posted how it goes. I do have to say I'm impressed with how quickly they have responded to our concerns. Hopefully what we contribute will help the next family suffer just a little bit less.
Facing terminal cancer is bad enough. You should at least be able to trust your doctor to help you deal with it.
Alas that was not to be the case. The doctors at said hospital are obviously brilliant and know their sh*t when it comes to cancer, treatment options, clinical trials, etc. But there's something distinctly wrong with an oncologist who knows his patient is dying and rather than help the patient with end-of-life issues, provide supportive care and just be an all-around human being, he instead washes his hands of the situation. As soon as it became clear that my dad's cancer was one of the most aggressive types out there (this information came thanks to his very helpful radiation oncologist), "Dr. No-Good" distanced himself as much as possible from our family.
While Dad spent a good part of the month of August in the hospital for uncontrollable pain and nausea, this particular doctor was still cheerleading Dad along, telling him that he still had options and assuring us that when he felt it was time to discuss hospice, he would let us know. Meanwhile he's telling my mom in the hallway that Dad didn't have much time left and that he would more than likely be discharged into hospice. Why couldn't he tell Dad this? Apparently Dad "wasn't ready." Well pardon me, but isn't it part of the oncologist's job description to help make him ready?
It took Dad's palliative care nurse to sit us down and tell us that we were nearing the end of this journey and recommend that we say whatever needed to be said, and soon. Less than twelve hours later, he was in a coma. When the nurse called Dr. No-Good to tell him of this significant turn for the worse, his response was "Well, it's time we refrain from heroic measures." No sh*t.
I firmly believe that Dad hung on as long and as hard as he did because he truly wasn't ready. And I blame his doctor for that. Of course the prospect of facing one's own death has got to be terrifying - who is ever really ready? But had we had more time to grapple with it, had my father known what was about to happen, I know he would have done some things differently. As would have I.
When the dust settled and the relatives left town, our family sat down and penned a pretty damning letter to the hospital. We didn't mince words and we did name names. It must have gotten their attention, because a few days later, the CEO of the hospital called. He assured my mom that they were already making changes based on some of our observations. And then he told mom that someone would be calling to follow up.
And someone did. The Vice-President in charge of Quality Control, in fact. And we have a meeting with him Tuesday morning. Hell yes.
I know our anger had to be directed somewhere and I know Dad didn't like us criticizing the doctor he trusted with his life. But that's just it...he trusted this doctor and this doctor let him down. And as someone headed into the medical profession, I find it quite disturbing that an institution with multiple accolades for its cancer center is so messed up.
So I'll keep you posted how it goes. I do have to say I'm impressed with how quickly they have responded to our concerns. Hopefully what we contribute will help the next family suffer just a little bit less.
Facing terminal cancer is bad enough. You should at least be able to trust your doctor to help you deal with it.
Friday, November 23, 2007
Gobble Gobble
Yesterday we faced the task of making a Thanksgiving turkey without the master turkey maker. Yet another moment to realize exactly how much Dad did for us. It was an adventure and we actually ended up making a really yummy turkey but it was just not the same. These "firsts" without my father are really getting to me...
Wednesday, November 14, 2007
Nurse Teeny
I've been feverishly working on nursing school applications and just as feverishly seeking out HONEST insights about just what it is I am getting myself into. Lo and behold, there is an entire universe out there of blogs by student nurses and new grad nurses and veteran nurses. And I've come to two conclusions.
The first is, I am insane. But we all knew that. This is a thankless, exhausting, frustrating future into which I am about to embark. But for some masochistic reason, I am looking forward to it.
My second conclusion is that I should throw my hat (nursing cap?) into the ring and join the booming nurse blogosphere. Not for any particular reason. Just because maybe someday, someone else will Google "student nurse blog" and my insights will offer them encouragement. Or send them running for the hills. Either way, I feel that I might have something to contribute to the conversation.
It didn't seem appropriate to start such a blog in this context. This is my safe place, where I can offer more personal, sometimes raw, thoughts about the grief process and what it means to face cancer. My nursing tales belong elsewhere. So here's my new one: The Makings of A Nurse. Enjoy and feel free to pass along the link to anyone you know who may be considering a future in nursing. I promise I won't scare them - at least not intentionally.
The first is, I am insane. But we all knew that. This is a thankless, exhausting, frustrating future into which I am about to embark. But for some masochistic reason, I am looking forward to it.
My second conclusion is that I should throw my hat (nursing cap?) into the ring and join the booming nurse blogosphere. Not for any particular reason. Just because maybe someday, someone else will Google "student nurse blog" and my insights will offer them encouragement. Or send them running for the hills. Either way, I feel that I might have something to contribute to the conversation.
It didn't seem appropriate to start such a blog in this context. This is my safe place, where I can offer more personal, sometimes raw, thoughts about the grief process and what it means to face cancer. My nursing tales belong elsewhere. So here's my new one: The Makings of A Nurse. Enjoy and feel free to pass along the link to anyone you know who may be considering a future in nursing. I promise I won't scare them - at least not intentionally.
Sunday, November 04, 2007
A New Year
After a really emotional week where I almost reached my breaking point on several occasions, I was sitting at Panera studying this afternoon and one of my favorite songs came onto iTunes. I first heard it 15 years ago when my CTY partner-in-crime Stephanie sang it at a talent show. Then it appeared in the finale of the fantastic movie "A Thing Called Love". One of the verses goes something like this:
"There’s a full moon tonight
And I’m bathing in its light
Naked as the day that I was born
There is no shame beneath this sky
I have kissed the past goodbye
And mended up my broken heart so torn
With a sweet sound
Only I can make
And it gets stronger
With every breath I take
And it’s all a part of making me feel new
Makes me think maybe God’s a woman too
Makes me think maybe God’s a woman too."
I had been thinking about the past year and the hell it has been. But the simple fact is, it's not the last time I'm going to look back at a period of my life and think "Wow, that was awful." And I have a choice for how I deal with it.
So in a nutshell, I'm not looking at my birthday as an occasion for sadness. I'm looking at it as a New Year's Day and it's time to make a resolution. My father took care of this family and showed us how to take care of ourselves. So I need to do so. I'll allow myself days of sadness, I'll allow myself to wallow and of course I'll allow myself to cry. But the best way I know how to honor my Dad and the legacy he left is to be healthy. Rather than sink deeper into hopelessness, I can use my grieving more mindfully to consider how I live each day.
One step at a time. But soon I'll not only be as good as new, I'll be better.
"There’s a full moon tonight
And I’m bathing in its light
Naked as the day that I was born
There is no shame beneath this sky
I have kissed the past goodbye
And mended up my broken heart so torn
With a sweet sound
Only I can make
And it gets stronger
With every breath I take
And it’s all a part of making me feel new
Makes me think maybe God’s a woman too
Makes me think maybe God’s a woman too."
I had been thinking about the past year and the hell it has been. But the simple fact is, it's not the last time I'm going to look back at a period of my life and think "Wow, that was awful." And I have a choice for how I deal with it.
So in a nutshell, I'm not looking at my birthday as an occasion for sadness. I'm looking at it as a New Year's Day and it's time to make a resolution. My father took care of this family and showed us how to take care of ourselves. So I need to do so. I'll allow myself days of sadness, I'll allow myself to wallow and of course I'll allow myself to cry. But the best way I know how to honor my Dad and the legacy he left is to be healthy. Rather than sink deeper into hopelessness, I can use my grieving more mindfully to consider how I live each day.
One step at a time. But soon I'll not only be as good as new, I'll be better.
Friday, November 02, 2007
Not Ready Yet
So my mom made an appointment for her, my sister and I to go for counseling with my Dad's friend and colleague who works with families of cancer patients. I opted not to go at the last minute. 'Probably shouldn't have done that and I'm not quite sure why I did. Just the more I thought about going to talk about it, the less I wanted to do so. Part of it is that I'm not quite ready to go there, especially at the tail-end of a very intense week. My brother reminded me that yesterday was the five-year anniversary of putting our beloved family dog to sleep. So we have my birthday, Halloween and Kenzie's death three days in a row. I think if someone asked me a question about how I'm doing today, I would scream. Or cry. Or both. Either way, I'm just not ready.
My greatest strength and my greatest weakness is my fierce independence. I take care of myself. That's what I do. But sometimes I don't know when it's time to ask someone to take care of me. "Help" does not seem to be in my vocabulary. But I'm not as strong as I make myself look. I've got issues too. :)
The other concern is that going to her feels a bit too close for comfort. If I'm going to counseling, I'd rather go to someone I don't know. I'd rather go to address all of my "things" (as Meredith Grey would put it). I don't think I could talk to her about the many layers that make up my grief, or about the many things I am grieving. I'm all for going to someone I know OF, whose reputation tells me that I will be helped, but I just don't know. I'd rather start fresh. There is a lot of ground to cover.
My greatest strength and my greatest weakness is my fierce independence. I take care of myself. That's what I do. But sometimes I don't know when it's time to ask someone to take care of me. "Help" does not seem to be in my vocabulary. But I'm not as strong as I make myself look. I've got issues too. :)
The other concern is that going to her feels a bit too close for comfort. If I'm going to counseling, I'd rather go to someone I don't know. I'd rather go to address all of my "things" (as Meredith Grey would put it). I don't think I could talk to her about the many layers that make up my grief, or about the many things I am grieving. I'm all for going to someone I know OF, whose reputation tells me that I will be helped, but I just don't know. I'd rather start fresh. There is a lot of ground to cover.
Wednesday, October 31, 2007
Haunting Memories
Last year at this time I was posting cute pictures of dogs in Halloween costumes. This year I am dreading the obligatory Halloween festivities. This was one of Dad's favorite holidays. He and my brother spent hours building a haunted house in our garage and scaring the little darlings that trekked down the road. Our street was always closed to traffic because of so many children so it was like one big block party. My parents made fish stew and hot captains and all of our friends came over.
This year the friends are still coming. We're making fish stew (and my favorite chili recipe) and Dad's covenant group is building the haunted house for us. For the most part it will be just like last year. With one major and heartbreaking exception.
This year the friends are still coming. We're making fish stew (and my favorite chili recipe) and Dad's covenant group is building the haunted house for us. For the most part it will be just like last year. With one major and heartbreaking exception.
Tuesday, October 30, 2007
Happy Freaking Birthday
Today I am 27. And since I'm home I got a little dose of our traditional family strings/present scavenger hunt. Under normal circumstances I'd be bouncing off the walls on my birthday eve, unable to sleep and up at the crack of dawn. I LOVE birthdays, especially birthday strings! But this morning I must have pressed snooze five times before I dragged my ass out of bed and got dressed.
Mom and sister gave a valiant effort at making my birthday morning as enjoyable as possible under the circumstances. But I just didn't feel like celebrating. And still don't.
My friend Akin and I joked around about skipping our birthdays this year. I'm beginning to think perhaps that's not such a bad idea. Maybe for my 28th I'll be in a more celebratory mood.
My dad really made holidays and birthdays special. It just adds to my sadness to know that that extra dose of joy won't be there anymore...
Mom and sister gave a valiant effort at making my birthday morning as enjoyable as possible under the circumstances. But I just didn't feel like celebrating. And still don't.
My friend Akin and I joked around about skipping our birthdays this year. I'm beginning to think perhaps that's not such a bad idea. Maybe for my 28th I'll be in a more celebratory mood.
My dad really made holidays and birthdays special. It just adds to my sadness to know that that extra dose of joy won't be there anymore...
Tuesday, October 16, 2007
Happy 57th Birthday Daddy!
You should be here. We can't make your famous guacamole without you!
Loving and missing you SO MUCH!
Loving and missing you SO MUCH!
Sunday, October 14, 2007
Hecticity
Is that even a word? Well I'm making it one ... if normal no longer applies, reality has still reared its ugly head with commitments every single night this week, except maybe Friday? I can't remember. It's also Fall Break, which entails me reading and taking notes on the five chapters I'm behind, and starting my term paper. Due November 1st. Exam is October 25th. University of Portland application due November 2nd. Sh*t.
And Tuesday is Daddy's birthday.
This could be my breakdown week...
And Tuesday is Daddy's birthday.
This could be my breakdown week...
Saturday, October 13, 2007
Quiet
I used to welcome silence - there was always a certain peacefulness to sitting quietly and letting your mind be still. But lately I avoid it at all costs. If I'm in my room, music is playing. If I'm around others, I'm talking. I have a hard time staying home in the quiet. No longer is my mind still...it won't shut up. When the quiet comes, the grief comes and I'm afraid it will take over completely and I will shut down.
Perhaps I'm supposed to shut down. Perhaps I'm supposed to let the grief take over. How do I do this?
Perhaps I'm supposed to shut down. Perhaps I'm supposed to let the grief take over. How do I do this?
Sunday, October 07, 2007
Big Puppy Dog
Dad's burial and memorial service were yesterday and he was there, no doubt about it. We had him cremated as requested and laid him to rest with his own father who passed away 10 years ago. A small graveside tribute with just family...it was beautiful.
Then we went on to the church for an incredibly moving memorial - over 500 people in attendance, all of whom had been touched by my father. Patients, friends, colleagues and family all brought together by this incredible man. His college friend eulogized him as a great big puppy dog full of love, and that pretty much sums up Dad to a tee. The three of us and mom all had a chance to say a few words and I was just so moved by the love in that sanctuary.
Aunt and uncle hosted a beautiful reception afterwards and everyone seemed to come. I had thought I would feel anti-social and stay away, but I actually ended up enjoying myself. We all swapped "Dougie stories" and looked at pictures and drank wine and ate good food, just as Dad would have wanted. We joked that were he there, he would have found the nearest couch and taken a nap, even in the middle of the party.
So today we start figuring out how to make life go on. This is going to be the hardest part. "Normal" no longer applies.
Then we went on to the church for an incredibly moving memorial - over 500 people in attendance, all of whom had been touched by my father. Patients, friends, colleagues and family all brought together by this incredible man. His college friend eulogized him as a great big puppy dog full of love, and that pretty much sums up Dad to a tee. The three of us and mom all had a chance to say a few words and I was just so moved by the love in that sanctuary.
Aunt and uncle hosted a beautiful reception afterwards and everyone seemed to come. I had thought I would feel anti-social and stay away, but I actually ended up enjoying myself. We all swapped "Dougie stories" and looked at pictures and drank wine and ate good food, just as Dad would have wanted. We joked that were he there, he would have found the nearest couch and taken a nap, even in the middle of the party.
So today we start figuring out how to make life go on. This is going to be the hardest part. "Normal" no longer applies.
Friday, October 05, 2007
Crappy Day
Not 'cuz anything particularly bad happened ... just 'cuz it was crappy. Tomorrow is the burial, followed by a memorial service, then a reception at our aunt and uncle's house. I'm exhausted just thinking about it. It will be really nice to focus on my dad but really hard to go through hours and hours of well-wishes and hugs from people I barely know. Everyone means well I'm sure but it's so hard to be reminded by the look in people's eyes that all of the sudden my father is gone and they're so sorry.
'Don't mean to sound ungrateful, it just doesn't feel good.
Not to mention today is the 1-year anniversary of my beautiful friend Lisa's untimely death. This tragedy seemed to the first of a series of unfortunate events over the past year.
I'm done with unfortunate events. Will someone please inform God?
'Don't mean to sound ungrateful, it just doesn't feel good.
Not to mention today is the 1-year anniversary of my beautiful friend Lisa's untimely death. This tragedy seemed to the first of a series of unfortunate events over the past year.
I'm done with unfortunate events. Will someone please inform God?
Friday, September 28, 2007
Love Pouring In
It's amazing how much one person can touch the world. I've seen over the past few days just how true that is for my Dad. How many times have I been told what a great man he was! And he truly was...a great husband, father, doctor, coach, volunteer, friend, everything!
Our old high school posted a very nice bulletin about Dad's passing:
I have some very sad news to pass on to the Harbor High community.
Yesterday afternoon, D.H. passed away after a brave battle with lung cancer. D. is survived by his wife and 3 children who all attended Harbor High. Our thoughts and prayers are with the [family] at this difficult time.
In a community of supportive parents, D. stood out as one of the best. He possessed a love for this school that was second to none. His kindness, wisdom, integrity and unassuming manner were traits that many of us were blessed by. He gave his time selflessly to serve the staff and students of Harbor High for many years, contributing to several campus programs.
D. was one of the founders of the Navigators, which later branched into what is now our Foundation. He served as a mentor for the Da Vinci Academy and played key roles on several school committees. As an example of D.'s caring nature, after the untimely death of a Costa Mesa High School football player a few years ago, D. launched a head injury monitoring program for our athletes to help prevent a similar occurrence at Harbor High.
Most important to me personally, D. was a mentor and a friend. He offered me his support and counsel during difficult times and I could always rely on him for sage advice on a number of different issues. He consistently maintained a positive perspective on life and just being in his presence made me feel that everything was going to be okay. D. had that same effect on countless people and we were all blessed by his beautiful spirit.
Principal
Our old high school posted a very nice bulletin about Dad's passing:
I have some very sad news to pass on to the Harbor High community.
Yesterday afternoon, D.H. passed away after a brave battle with lung cancer. D. is survived by his wife and 3 children who all attended Harbor High. Our thoughts and prayers are with the [family] at this difficult time.
In a community of supportive parents, D. stood out as one of the best. He possessed a love for this school that was second to none. His kindness, wisdom, integrity and unassuming manner were traits that many of us were blessed by. He gave his time selflessly to serve the staff and students of Harbor High for many years, contributing to several campus programs.
D. was one of the founders of the Navigators, which later branched into what is now our Foundation. He served as a mentor for the Da Vinci Academy and played key roles on several school committees. As an example of D.'s caring nature, after the untimely death of a Costa Mesa High School football player a few years ago, D. launched a head injury monitoring program for our athletes to help prevent a similar occurrence at Harbor High.
Most important to me personally, D. was a mentor and a friend. He offered me his support and counsel during difficult times and I could always rely on him for sage advice on a number of different issues. He consistently maintained a positive perspective on life and just being in his presence made me feel that everything was going to be okay. D. had that same effect on countless people and we were all blessed by his beautiful spirit.
Principal
Wednesday, September 26, 2007
Rest My Sweet Daddy
Hell on earth. That is how I would describe the first 10 hours of today. Dad woke up at 3 a.m. gasping for breath...he would finally relax only to convulse in panic when his breath caught in his throat the next time. The fluid in his lungs was beginning to overcome him and he was so scared to let go.
Thanks to our wonderful home health nurse, however, we found a good balance of pain and anti-anxiety meds to allow him some rest. For two hours he slept peacefully and we all breathed a little more easily. Before we knew it, he had quietly slipped away.
What a tragedy to lose such a man as my father - the "Daddy of the Universe". What an injustice for him to suffer the way he did. But he is finally at peace and we can be comforted that his final breaths were not in pain or fear. He has family that went before him to greet him in heaven - he was never alone on this side of the journey and he'll never be alone there either.
I love you Daddy, all the way from the garage door to the living room wall!
All my love,
Teeny
Thanks to our wonderful home health nurse, however, we found a good balance of pain and anti-anxiety meds to allow him some rest. For two hours he slept peacefully and we all breathed a little more easily. Before we knew it, he had quietly slipped away.
What a tragedy to lose such a man as my father - the "Daddy of the Universe". What an injustice for him to suffer the way he did. But he is finally at peace and we can be comforted that his final breaths were not in pain or fear. He has family that went before him to greet him in heaven - he was never alone on this side of the journey and he'll never be alone there either.
I love you Daddy, all the way from the garage door to the living room wall!
All my love,
Teeny
Monday, September 24, 2007
Keeping Watch
Daddy is still with us but has slipped into a coma. We have been keeping vigil since last night and have all been able to steal moments with him alone and together. I finally let it all out earlier tonight, which felt really good, but now I can't seem to make the tears stop. I've tried to be the knowledgeable big sister/"nurse in training" but finally I just let myself be the grieving daughter.
There are so many things I love about my Dad that I'm overwhelmed to list them all. But here are a few just to give y'all an idea of how blessed we have been to have this amazing man as our father:
-His love for spontaneously dancing, whether it's the swing or the twist
-His communication skills - he always knows what to say and when to just give a big "Daddy hug"
-The traditions he created and carried on from his own childhood - every year we have "birthday strings" scavenger hunts
-His strength as our "rock" in the midst of a lot of family trials over the past 30 years
-His utter devotion to Mom, his soul mate, to the point of being a romantic sap we all teased but secretly wished our spouses would be like someday
I could go on. A lot of people are referring to him in the past tense but I refuse to go there yet. He's still here...really he always will be....
There are so many things I love about my Dad that I'm overwhelmed to list them all. But here are a few just to give y'all an idea of how blessed we have been to have this amazing man as our father:
-His love for spontaneously dancing, whether it's the swing or the twist
-His communication skills - he always knows what to say and when to just give a big "Daddy hug"
-The traditions he created and carried on from his own childhood - every year we have "birthday strings" scavenger hunts
-His strength as our "rock" in the midst of a lot of family trials over the past 30 years
-His utter devotion to Mom, his soul mate, to the point of being a romantic sap we all teased but secretly wished our spouses would be like someday
I could go on. A lot of people are referring to him in the past tense but I refuse to go there yet. He's still here...really he always will be....
Sunday, September 23, 2007
Too Fast
Dad's CEA markers shot up from 74 to 123 in a week. Yesterday his home health nurse said we should all start preparing ourselves. Last night he was agitated and in a lot of pain, despite increasing the dose on his morphine drip and pushing the button as often as we were allowed. Then he fell down while walking to his bed and was in so much pain we couldn't move him - he and Mom slept on the floor and the Fire Department very kindly came this morning to move him back into bed.
They're now saying it will be a matter of days, if not hours. We are discontinuing his TPN after today, as well as the Tarceva and Avastin, and making a rapid transition to hospice.
This is happening way too fast. I alternate between feeling completely numb and completely out of control. Mostly I just can't fathom the thought of waking up without him here.
They're now saying it will be a matter of days, if not hours. We are discontinuing his TPN after today, as well as the Tarceva and Avastin, and making a rapid transition to hospice.
This is happening way too fast. I alternate between feeling completely numb and completely out of control. Mostly I just can't fathom the thought of waking up without him here.
Tuesday, September 18, 2007
Why Obama?
A small but welcome distraction from the day-to-day trials and tribulations of this cancer journey has been my involvement with Barack Obama's presidential campaign. And now I have a victory of my own to share.Last spring I became involved with an organization called "Barack the Youth Vote". Joe Vogel, BTYV's founder and director, decided to self-publish a book featuring 25 essays by youth and young adults about why Obama was their choice for President. I submitted an essay and was selected to be part of the book.
The Obama Movement is now available on Amazon.com. It will soon be available through other online retailers. Availability in stores depends on online sales, so if you are intrigued, this it the time to make that purchase. :)
Here is a description of the book from the editor's website:
Why Barack Obama?
This was the question posed to students and young professionals across the country in the wake of the senator’s historic announcement for president in Springfield, Illinois. The responses came pouring in from all corners of America.
The Obama Movement is a collection of these fascinating and diverse responses.
Not since the Kennedys in the 1960s has a politician so energized the youth of America. The key distinction is that today's generation is mobilizing through technology and online networking in ways unimaginable to previous campaigns. Hundreds of thousands of previously turned off young people have tuned into the vision of the former community organizer from South Chicago. Online groups have swelled into the hundreds of thousands, creative ads by supporters have dominated YouTube, and interest has translated into record-setting donations and massive turnouts in Iowa and New Hampshire, Nevada and Texas.
The Obama Movement contains the personal stories of young people in the trenches of one of the most exciting and historically significant elections in American history—and reveals why they are determined to make their voices count in 2008.
Sunday, September 09, 2007
Sudden
A few weeks ago my Dad and I were sitting in the infusion center on a hydration visit and a woman was set up next to him for a platelet transfusion. We got to chatting and found out her name was Cheryl and she too had a team for the Relay for Life last May. She was one of the most friendly, positive people I've ever met. She and all three of her sisters had faced cancer...and two had succumbed, one to colon cancer at a young age and one to breast cancer that came back all over her body on her 5-year remission anniversary. Her other sister was in remission after battling breast cancer. And Cheryl had stage 4 melanoma in practically all of her major organs, though you would never have guessed how sick she was from her spunk. She was planning to get into a clinical trial and was coming up on the year anniversary of her diagnosis. She and Dad hit it off and decided that next year they would co-chair the Survivors' Committee at the Relay.
Then last weekend we found a "mobile notary" in the neighborhood to come sign my car title; we got to talking and discovered that this woman is Cheryl's best friend! We were so excited about the discovery, and the notary gave Dad Cheryl's phone number and said when he was feeling better, he and Cheryl could take walks together. What a gift to encounter this beautiful soul yet again, albeit indirectly.
But alas, cancer is a bastard of a disease. Dad and I opened the paper Thursday morning to find Cheryl's picture staring out at us from the obituary section. How it happened we'll never know. We know she'd just had surgery, so something may have gone awry. But this is the first one of Dad's "cancer peers" to appear in the obituaries since this journey started. And it shook us all up. Cheryl seemed a lot less sick than my dad, and yet he's still here and actually hanging in there quite well.
Cancer doesn't play favorites, nor does it conform to expectations. It is not part of God's plan. It does not "happen for a reason."
And it sure as hell isn't fair.
Then last weekend we found a "mobile notary" in the neighborhood to come sign my car title; we got to talking and discovered that this woman is Cheryl's best friend! We were so excited about the discovery, and the notary gave Dad Cheryl's phone number and said when he was feeling better, he and Cheryl could take walks together. What a gift to encounter this beautiful soul yet again, albeit indirectly.
But alas, cancer is a bastard of a disease. Dad and I opened the paper Thursday morning to find Cheryl's picture staring out at us from the obituary section. How it happened we'll never know. We know she'd just had surgery, so something may have gone awry. But this is the first one of Dad's "cancer peers" to appear in the obituaries since this journey started. And it shook us all up. Cheryl seemed a lot less sick than my dad, and yet he's still here and actually hanging in there quite well.
Cancer doesn't play favorites, nor does it conform to expectations. It is not part of God's plan. It does not "happen for a reason."
And it sure as hell isn't fair.
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