Jill, Erin and Diane have all mentioned our efforts to hold on to moments with Craig. I burn certain moments into my memory, repeating events over and over in my head, hoping to hang on to the details. One such event happened yesterday, during one of many difficult conversations with the palliative care team. I attempted to ask the team an emotional question about the effect removing TPN from Craig’s regimen would have on his prognosis. I started to tear up as I asked the question and soon felt Craig reach for my hand and hold it tight, giving it a squeeze. I took strength from the gesture and was blown away by his attempt to give comfort, even in the midst of his own overwhelming circumstances.
It’s hard for me to express how lucky I feel that Craig is a part of my life. He is an amazing, intelligent, loving, funny, romantic, talented, handsome, charming man. And that list of adjectives doesn’t come close to accurately describing the person I have come to know. I wouldn’t trade the time I have shared with him for anything in the world. It’s not enough, but I’m more than glad to have experienced it. Here’s to making the most of the time that we have.
Emily
Thursday, July 31, 2008
Cub Scout Crew
Craig, I just want you to know that I have been calling people that I have not spoken to in years. I have contacted Dan Hounslow, Andy Arterbery, Aaron Mauterer, Matt Kay, and more... I even had to hunt down their parents to get their numbers! It is a good thing those older generations like those landlines still. :P In times like this I like them too.
All of them knew about what was going on and they all extend best wishes to you and the rest of the family. Hopefully we can get some posts/emails from them in a bit to relive the good o'l days of baking in your mothers kitchen, and/or us running around being the kids we were.. :P I know a few of their families have also actively been reading the site and I want them all to know that they are welcome to post. The memories of the past are a great relief to all of the family in this time. As your sisters said it, baking was a badge, but what I really think is they are memories forever! If someone has some photos of all of us out there, please let me know... I will add them to the site! I wish I had kept some of those T-ball and coach-pitch team pictures..
Stephen
All of them knew about what was going on and they all extend best wishes to you and the rest of the family. Hopefully we can get some posts/emails from them in a bit to relive the good o'l days of baking in your mothers kitchen, and/or us running around being the kids we were.. :P I know a few of their families have also actively been reading the site and I want them all to know that they are welcome to post. The memories of the past are a great relief to all of the family in this time. As your sisters said it, baking was a badge, but what I really think is they are memories forever! If someone has some photos of all of us out there, please let me know... I will add them to the site! I wish I had kept some of those T-ball and coach-pitch team pictures..
Stephen
I'm sorry (not really)
Today was yet another hard discussion. Basically, there's nothing more that can be done for Craig aside from making him comfortable. So there it is. We're going to the mountains to have some much needed relaxation and change of scenery.
With all of the new developments, I've been thinking a lot about the rotten things brothers and sisters do to each other in the course of their lives. I've decided that I could either feel really, really guilty for every pinch, push and stinky foot in the face, or I could look at these moments as the colorful, kinky yarn that ties us together. So here are some things that I'm sorry (not really) for:
1) using eyeshadow to make a bruise and then telling Dad that Craig hit me, which resulted in him being sent to his room and having to endure a monster lecture on hitting. While this was a shitty thing to do in general. it's really pretty funny in the context of our family and makes for a great story.
2) hogging the tv in high school and making him endure Days of Our Lives taped marathons when he wanted to watch the Simpsons. In hindsight, I think I really AM sorry for that. Who was the numbnuts that thought Marlena being possessed by Satan was a smart storyline?!
3) the time he had to kick open a door in a Lithuanian bus in order to get me out of the rest stop before it left me....in the middle of nowhere...in Lithuania. We had to endure angry Russian and Lithuanian epithets, at least I think that's what they were, for the rest of the trip. Embarrassing at the time, but another great story.
And finally, for being a pain in the ass sometimes. Still, I'm not really sorry for that because it has allowed us to truly love each other in a way that transcends being just brother and sister. Putting up with each other through some of the stuff we have means that we like and respect each other as people, which I think is pretty special.
Anyway, what I mean to say is that I'm not sorry for all the times we've yelled at each other because it's made us closer in the end.
Love you Craig, Jill and Erin! Always and forever.
D
With all of the new developments, I've been thinking a lot about the rotten things brothers and sisters do to each other in the course of their lives. I've decided that I could either feel really, really guilty for every pinch, push and stinky foot in the face, or I could look at these moments as the colorful, kinky yarn that ties us together. So here are some things that I'm sorry (not really) for:
1) using eyeshadow to make a bruise and then telling Dad that Craig hit me, which resulted in him being sent to his room and having to endure a monster lecture on hitting. While this was a shitty thing to do in general. it's really pretty funny in the context of our family and makes for a great story.
2) hogging the tv in high school and making him endure Days of Our Lives taped marathons when he wanted to watch the Simpsons. In hindsight, I think I really AM sorry for that. Who was the numbnuts that thought Marlena being possessed by Satan was a smart storyline?!
3) the time he had to kick open a door in a Lithuanian bus in order to get me out of the rest stop before it left me....in the middle of nowhere...in Lithuania. We had to endure angry Russian and Lithuanian epithets, at least I think that's what they were, for the rest of the trip. Embarrassing at the time, but another great story.
And finally, for being a pain in the ass sometimes. Still, I'm not really sorry for that because it has allowed us to truly love each other in a way that transcends being just brother and sister. Putting up with each other through some of the stuff we have means that we like and respect each other as people, which I think is pretty special.
Anyway, what I mean to say is that I'm not sorry for all the times we've yelled at each other because it's made us closer in the end.
Love you Craig, Jill and Erin! Always and forever.
D
Part Two of Putting the CAN in Cancer: The Pit Crew
Like most race car drivers, Danica Patrick has a pit crew. When not getting run over by Ms. Patrick, the pit crew is responsible for topping off liquids, pumping up tires, and, basically, fixing all things that need fixing. The "pitters" have to respond quickly to problems, and adjust with every hurdle, in order to keep things running smoothly and the car on the road. For the past 11 months, Dad, E, D, Emily and I have functioned as Mom and C's very own pit crew. We've pumped liquids, changed tires (depends), wiped windshields (foreheads), and problem-solved under duress, all so that our guys could get back on the road.
Like race car pitters, we've honed specific skills to fit each driver, and each situation. For Mom, who, by the end of her illness, had difficulty walking and controlling her bladder, the routine involved what we dubbed the "two-person shuffle/third person snatch and grab." This involved two people helping her to the car/commode, etc. with the third ever ready with the wheelchair and/or commode. For commode changes, the third person would also help with fetching new depends, changing clothes, and tying shoes. By the end of her illness, a three-person pit crew became standard, as Mom was unable to shuffle even the slightest distance. We became proficient at power lifting, and in particular, lifting so as to prevent injury.
Like Danica, we also travel in style, complete with our own gear (i.e. bucket, wheelchair, commode, etc.). With mom, I was the lucky cat who got to ride in the back with the commode on my lap, and the bucket nestled nicely in my face. One particular commode cart-around stands out; it was when we decided to treat ourselves to dinner at ‘somefin fancy' downtown. We pulled into the parking lot of a very nice restaurant with mom slumping in the passenger seat, Dad (with his cowboy hat) cramped in the back, and me with a commode smack in my face. I had to whip out my fancy Cirque de Sole moves just to get out of the car. Bringing the potty to the people (i.e. plopping it in front of God and everyone) just didn't seem classy. We were half tempted to ask for a party of six and bring it along with us. Laughing aside, that thing was a lifesaver, and without it, we'd have some funny looking carpet by now.
Craig's pit crew has one thing in common with Libya's Gaddafi's security detail: they're all female. Craig could be rampin' up his ‘street cred' if only we weren't his sisters --well, most of us. Not too cool. Since March, Diane, Erin, Emily and I have been rotating the lead pitter post. Even though there's usually one pusher, we work as a team, with a few pushing the meds, another connecting the saline, and yet another hooking up the TPN. We've been keeping our guy well oiled for the past five months, which means pumping him with high-octane fuel (TPN), as well as meds and saline to keep his gears running smoothly. And like other true professionals, we've mastered the pit exchange to within minutes. We can disconnect and reconnect a TPN within two shakes of a lamb's tail. We can draw up Ativan and Nexium within seconds, tops, always following the S.A.S.H. rule: saline, administer, saline, heparin, with alcohol in between. (Actually, we've caught some of the ER nurses skimping on SASH, as well as alcohol. For shame.)
I remember coming back to Craig's apartment one day to find scattered carcasses of our previous "pit". Mom wasn't doing well, and had to rush to the hospital, so we didn't take the time to dispose of Craig's empty syringes. Good thing Denver Place wasn't doing maintenance. From the needles on the ground, one could assume the handsome lawyer in 3104 was actually a junkie.
Like mom, C also travels in style. His travel kit includes a little yellow ‘travel' bucket, a cache of meds, and a red box named Coleman. We can't travel without some sort of vomit catcher, a hefty dose of pain meds, and cooler (for the meds). Without fail, some nurse in the ER will ask us "what's that for." To keep our hearts cool for transplant ...what do you think? Aw, we laugh. Like mom, the bucket and co. have helped Craig through tough times, and, at the very least, have kept the carpets clean.
I'm waiting for my pit crew jersey. Every pitter deserves a jersey, right? We'll need something bright so Craig doesn't run us over like ol' Danica. Maybe Bayer and Genentech could be sponsors. We shall see ... -- J
Like race car pitters, we've honed specific skills to fit each driver, and each situation. For Mom, who, by the end of her illness, had difficulty walking and controlling her bladder, the routine involved what we dubbed the "two-person shuffle/third person snatch and grab." This involved two people helping her to the car/commode, etc. with the third ever ready with the wheelchair and/or commode. For commode changes, the third person would also help with fetching new depends, changing clothes, and tying shoes. By the end of her illness, a three-person pit crew became standard, as Mom was unable to shuffle even the slightest distance. We became proficient at power lifting, and in particular, lifting so as to prevent injury.
Like Danica, we also travel in style, complete with our own gear (i.e. bucket, wheelchair, commode, etc.). With mom, I was the lucky cat who got to ride in the back with the commode on my lap, and the bucket nestled nicely in my face. One particular commode cart-around stands out; it was when we decided to treat ourselves to dinner at ‘somefin fancy' downtown. We pulled into the parking lot of a very nice restaurant with mom slumping in the passenger seat, Dad (with his cowboy hat) cramped in the back, and me with a commode smack in my face. I had to whip out my fancy Cirque de Sole moves just to get out of the car. Bringing the potty to the people (i.e. plopping it in front of God and everyone) just didn't seem classy. We were half tempted to ask for a party of six and bring it along with us. Laughing aside, that thing was a lifesaver, and without it, we'd have some funny looking carpet by now.
Craig's pit crew has one thing in common with Libya's Gaddafi's security detail: they're all female. Craig could be rampin' up his ‘street cred' if only we weren't his sisters --well, most of us. Not too cool. Since March, Diane, Erin, Emily and I have been rotating the lead pitter post. Even though there's usually one pusher, we work as a team, with a few pushing the meds, another connecting the saline, and yet another hooking up the TPN. We've been keeping our guy well oiled for the past five months, which means pumping him with high-octane fuel (TPN), as well as meds and saline to keep his gears running smoothly. And like other true professionals, we've mastered the pit exchange to within minutes. We can disconnect and reconnect a TPN within two shakes of a lamb's tail. We can draw up Ativan and Nexium within seconds, tops, always following the S.A.S.H. rule: saline, administer, saline, heparin, with alcohol in between. (Actually, we've caught some of the ER nurses skimping on SASH, as well as alcohol. For shame.)
I remember coming back to Craig's apartment one day to find scattered carcasses of our previous "pit". Mom wasn't doing well, and had to rush to the hospital, so we didn't take the time to dispose of Craig's empty syringes. Good thing Denver Place wasn't doing maintenance. From the needles on the ground, one could assume the handsome lawyer in 3104 was actually a junkie.
Like mom, C also travels in style. His travel kit includes a little yellow ‘travel' bucket, a cache of meds, and a red box named Coleman. We can't travel without some sort of vomit catcher, a hefty dose of pain meds, and cooler (for the meds). Without fail, some nurse in the ER will ask us "what's that for." To keep our hearts cool for transplant ...what do you think? Aw, we laugh. Like mom, the bucket and co. have helped Craig through tough times, and, at the very least, have kept the carpets clean.
I'm waiting for my pit crew jersey. Every pitter deserves a jersey, right? We'll need something bright so Craig doesn't run us over like ol' Danica. Maybe Bayer and Genentech could be sponsors. We shall see ... -- J
Wednesday, July 30, 2008
Wind in the Sails
(Written around 9pm)
I'm in Craig's room watching his head lurch forward, tense up, then fall back to the pillow. It's anyone's guess whether it's from hallucinations, which he's been having more often, or reflex to sudden excruciating pain. I'd like to believe it's the former but my hunch is the latter -- he's gripping his stomach as I type. They've doubled his Oxycodone for pain management instead of giving it to him every hour as previously scheduled. His Fentayl patch was also increased. The message between the lines is that Craig is having a lot more pain.
Symptoms change almost daily; such is the pace of life with cancer. The wind in the sails can shift dramatically and it seems they're pushing us off-center as time ticks on. Things aren't well. Craig's abdomen seems more distended and you can hear the fluid sloshing around his diaphragm, belly, etc. It's impossible to see and witness, standing powerless to do anything else but ask if he's ok. Of course he's not ok, but we ask anyway and bring anything he asks to make it better if the pain, sweats, nausea become more off-kilter. He walks with more pain, grunting with each step, and wakes himself up from sleep with a loud yelp. It's startling and gives me whiplash each time as I turn to see if he's alright.
The doctors have reduced the volume of TPN so that there is less fluid coming into his body, since his albumen is so low (fluid is leaching out of his cells). His breathing is much more labored due to the pain and pressure from the tumors. It seems breathing itself causes pain. We sit and stare, memorizing his face and mannerisms as we did our Mom. He doesn't talk much; hasn't for some time. But now, when we say "I love you" he says it back with a bit more meaning. Yesterday, Jill and I said "you know we love you?" and he said "I know that". This exchange was reminiscent of asking Mom if she knew how much we loved her. She cried and nodded her head yes. I told her it is without boundaries, without measure, infinite within me. That is true with Craig; the love for my older brother, my best friend, is deep, pure and eternal.
Earlier this evening, as the sister pod stood around his bed, Jill told him "I'm glad you're my big brother" and he said almost immediately "I'm glad you're my baby sister, as I am with all of you" (meaning Diane and I). These are the exchanges we yearn for and cling to when they occur. We sit in his patient room all day waiting for them, never taking for granted the moments when he has energy to talk, laugh or take laps around the hallways. Earlier in the day, we played "his" music -- blues music -- and talked about blues musicians he's met along the way. Once the CD's were finished, I turned on another favorite, Seu George, from Jill's computer. Craig bended his ear further and turned slowly. I asked if the music was bothersome and he quietly said, "noooo. I like it. This is really nice." There's an honesty in his statements that makes me want to stop the earth from spinning if it meant giving Craig some sense of pleasure for a moment. I'd do anything I could to give him peace, comfort and happiness. It was nice that we could at least give him enjoyment through music.
The other day, as we pushed Craig around in the exact same wheelchair Mom used (her wheelchair), I saw people, couples, pregnant ladies, folks otherwise blissfully happy with their lives and for a moment I pretended that was us....weightless. Then I blinked, looked to my side and saw the bags under my sisters' eyes, Emily pushing my brother in Mom's wheelchair, Craig's hollow cheeks and brow sweating just because. It's hard not to be a bit envious of a similar time when things weren't so critical and hard -- a time before strategizing medical care and wondering what will happen...when. But, I also heard our laughter, though quiet; saw the smiles, thought not as broad; felt the intimacy, camaraderie and connection of five young people who have shared a common, personal journey through hardships few have experienced so early in their lives. And, I knew through whatever hell we are living, just how incredibly lucky we are to at least have each other.
~ E
I'm in Craig's room watching his head lurch forward, tense up, then fall back to the pillow. It's anyone's guess whether it's from hallucinations, which he's been having more often, or reflex to sudden excruciating pain. I'd like to believe it's the former but my hunch is the latter -- he's gripping his stomach as I type. They've doubled his Oxycodone for pain management instead of giving it to him every hour as previously scheduled. His Fentayl patch was also increased. The message between the lines is that Craig is having a lot more pain.
Symptoms change almost daily; such is the pace of life with cancer. The wind in the sails can shift dramatically and it seems they're pushing us off-center as time ticks on. Things aren't well. Craig's abdomen seems more distended and you can hear the fluid sloshing around his diaphragm, belly, etc. It's impossible to see and witness, standing powerless to do anything else but ask if he's ok. Of course he's not ok, but we ask anyway and bring anything he asks to make it better if the pain, sweats, nausea become more off-kilter. He walks with more pain, grunting with each step, and wakes himself up from sleep with a loud yelp. It's startling and gives me whiplash each time as I turn to see if he's alright.
The doctors have reduced the volume of TPN so that there is less fluid coming into his body, since his albumen is so low (fluid is leaching out of his cells). His breathing is much more labored due to the pain and pressure from the tumors. It seems breathing itself causes pain. We sit and stare, memorizing his face and mannerisms as we did our Mom. He doesn't talk much; hasn't for some time. But now, when we say "I love you" he says it back with a bit more meaning. Yesterday, Jill and I said "you know we love you?" and he said "I know that". This exchange was reminiscent of asking Mom if she knew how much we loved her. She cried and nodded her head yes. I told her it is without boundaries, without measure, infinite within me. That is true with Craig; the love for my older brother, my best friend, is deep, pure and eternal.
Earlier this evening, as the sister pod stood around his bed, Jill told him "I'm glad you're my big brother" and he said almost immediately "I'm glad you're my baby sister, as I am with all of you" (meaning Diane and I). These are the exchanges we yearn for and cling to when they occur. We sit in his patient room all day waiting for them, never taking for granted the moments when he has energy to talk, laugh or take laps around the hallways. Earlier in the day, we played "his" music -- blues music -- and talked about blues musicians he's met along the way. Once the CD's were finished, I turned on another favorite, Seu George, from Jill's computer. Craig bended his ear further and turned slowly. I asked if the music was bothersome and he quietly said, "noooo. I like it. This is really nice." There's an honesty in his statements that makes me want to stop the earth from spinning if it meant giving Craig some sense of pleasure for a moment. I'd do anything I could to give him peace, comfort and happiness. It was nice that we could at least give him enjoyment through music.
The other day, as we pushed Craig around in the exact same wheelchair Mom used (her wheelchair), I saw people, couples, pregnant ladies, folks otherwise blissfully happy with their lives and for a moment I pretended that was us....weightless. Then I blinked, looked to my side and saw the bags under my sisters' eyes, Emily pushing my brother in Mom's wheelchair, Craig's hollow cheeks and brow sweating just because. It's hard not to be a bit envious of a similar time when things weren't so critical and hard -- a time before strategizing medical care and wondering what will happen...when. But, I also heard our laughter, though quiet; saw the smiles, thought not as broad; felt the intimacy, camaraderie and connection of five young people who have shared a common, personal journey through hardships few have experienced so early in their lives. And, I knew through whatever hell we are living, just how incredibly lucky we are to at least have each other.
~ E
Life and Times of Hotel Hospital
Quotable moments series, Take 1--
Yesterday:
--The x-ray tech appeared at the door and the four ladies popped up, each murmuring their respective "that's our cue". Diane took it one step further by tapping her ovaries while saying "the babies and I will be taking our leave."
--Craig said, "jeeeeze, Debbie Downers" when the palliative care team left after one of the "heavier" conversations.
Today
--Craig noted the feeling of water sloshing around his belly...
Craig: "I feel like I need to be burped like a baby."
Nurse: "My days are over; we'll have to go down a few floors for that [maternity wing]."
--Jill and Emily were looking at Vera Wang wedding dresses on-line just for laughs.
Jill: "Wow, that would be hard to get out of for the wedding night, ya know what I mean..."
--Diane mocking Jill about working out tomorrow.
"There has to be three of us here at all times or the witch circle isn't complete."
--Jill: "I wish we were like the Real World and had a video camera following us to capture all our memories so that we could play back events even if they weren't quite the same.
Diane: "Yeah, but the good thing about memories is you can embelish them"
Jill: "yeah, but it's the jogging of them that I find difficult"
Yesterday:
--The x-ray tech appeared at the door and the four ladies popped up, each murmuring their respective "that's our cue". Diane took it one step further by tapping her ovaries while saying "the babies and I will be taking our leave."
--Craig said, "jeeeeze, Debbie Downers" when the palliative care team left after one of the "heavier" conversations.
Today
--Craig noted the feeling of water sloshing around his belly...
Craig: "I feel like I need to be burped like a baby."
Nurse: "My days are over; we'll have to go down a few floors for that [maternity wing]."
--Jill and Emily were looking at Vera Wang wedding dresses on-line just for laughs.
Jill: "Wow, that would be hard to get out of for the wedding night, ya know what I mean..."
--Diane mocking Jill about working out tomorrow.
"There has to be three of us here at all times or the witch circle isn't complete."
--Jill: "I wish we were like the Real World and had a video camera following us to capture all our memories so that we could play back events even if they weren't quite the same.
Diane: "Yeah, but the good thing about memories is you can embelish them"
Jill: "yeah, but it's the jogging of them that I find difficult"
Robert Novak
A fifty dollar citation after striking a homeless man with a car… wow! Now that’s fame. A cynical and slightly bitter person might say ol' Bob, the cruelest of all journalists, should be slapped with a heftier fine – say something in the misdemeanor range. But knowing he has a brain tumor seems to personalize him a bit. Spatial and visual impairments are typical for brain tumor survivors. Mom had similar problems. Dad remembers a time when he was riding with mom, and she blazed past a stoplight only to stop in the middle of the intersection. He asked her what she was doing, but she had no awareness of her error. Mom’s traffic violation seems relatively minor compared to Robert Novak’s, but had it been rush hour, it could have been completely different.
What I'm struggling with is the frequency in which people are ‘catching’ brain tumors, as Craig likes to say. Is it us, or have more people been diagnosed? And if so, could cell phones be a cause? A recent report from some high-brow institution seems to think so. It makes sense. I know I get a headache after using the thing too long. I also feel like I’m frying my ovaries every time I use my lap top, but that’s another story. Maybe we should all bite the bullet and purchase those handless phone cords. Such a purchase seems reasonable when compared to the prospect of catching a brain tumor. But then again, with this economy … ;) --J
Tuesday, July 29, 2008
Monuments to tower the grim
(I know this is heavy to read, but such is the weight (and wait) of life. It's in the moment at the least...)
I can't believe my beautiful brother is dying. I can't believe my beautiful Mom is dead. I can't believe all this is actually happening and not some craptastic OK! magazine story. I'm scared of what awaits when it is all over, and what is left is a gaping hole where a third of my family once was. I'm scared of the sadness and the pain and the long, long road ahead of getting used to it all. I'm scared of watching my dad, sisters, and Emily struggle through this -- of friends/family grieving alone. And, the travesty of travesties about it all is that it's real. This is happening to me, to my sisters and dad, to my brother and mom. This will be my story for the rest of my life. It's interesting, I'll give it that, but not really the bedtime story I'd like to share with my future children. I will, of course. Mom and Craig will be my monuments to tower the grim. But, I would much rather not have to explain to people how Mom and Craig were. I'd like them to know first hand.
An ER security guard asked of mom today. He thought we were in the area for her. "She passed away last month" still doesn't process. I'm scared of the day when it does.
I can't believe my beautiful brother is dying. I can't believe my beautiful Mom is dead. I can't believe all this is actually happening and not some craptastic OK! magazine story. I'm scared of what awaits when it is all over, and what is left is a gaping hole where a third of my family once was. I'm scared of the sadness and the pain and the long, long road ahead of getting used to it all. I'm scared of watching my dad, sisters, and Emily struggle through this -- of friends/family grieving alone. And, the travesty of travesties about it all is that it's real. This is happening to me, to my sisters and dad, to my brother and mom. This will be my story for the rest of my life. It's interesting, I'll give it that, but not really the bedtime story I'd like to share with my future children. I will, of course. Mom and Craig will be my monuments to tower the grim. But, I would much rather not have to explain to people how Mom and Craig were. I'd like them to know first hand.
An ER security guard asked of mom today. He thought we were in the area for her. "She passed away last month" still doesn't process. I'm scared of the day when it does.
This is the brand we'll have for the rest of time and it's in a place where sleeves won't help. Eventually, it will just be part of me [us], but, right now, it's that thing that catches my eye and hurts like hell.
~E
Bunnies and other things
First, a post about bunnies, in honor of our friend, Steve, who has requested more 'light-hearted' material.
(Read in a Paris Hilton voice): Bunnies are cute, especially fluffy bunnies, with big bushy tails and little bunny teeth. Bunnies don’t complain; they just jump and play and eat lots of carrots. I like white bunnies, but when they get dirty, they become brown bunnies, and that’s gross. Isn’t it, Steve?
Love in my heart, Stephen. Always aim to please...
And now, a comment for our friends down at food service: for real, people. W.T.F.? We’ve left notes; we’ve politely shooed you away; we’ve even mimed “vomit” for you. We’re seconds from taking a bright pink sharpie and writing “ixnay on the foodscray” on his door. Do we have to break out the Dr. Seuss too? Craig won’t eat food here or there. He won’t eat food anywhere. He won’t like it in a house. He won’t like it with a mouse. Not in a box. Not with a fox. Not with a bee. And certainly not at UNI C!
So why the rant? Two gentlemen poked their heads in earlier this afternoon. They identified themselves first with a familiar knock knock, and then a "hello, nutrition. Can we come in?" I could here Erin murmur, "maybe". They went on to explain that they were from food service and wanted to ask a few questions like "have you eaten today?" "He doesn't eat", we replied. "Oh, when will he eat?" He won't, twinkletoes, and I’ll tell ya why: because he DOESN’T EAT. I know it's complicated so we'll separate it: does not, i.e. never. When we said as much, the guys (who I assume were conducting a survey on quality, etc.) said, "oh, then we’ll come back." Actually, please don’t. And, tell your friends at tray pick-up that Craig does not currently, nor will he in the future, have a tray. It’s reminiscent of our struggles with food service back when mom was in the hospital. Someone even tried to deliver a tray when she was minutes from passing. Hey, food service: amscray, and pass it on. -- J
Jumper Cables
As one blazes through life, one come across those, "ummmm, perhaps I ought not to..." moments. The other evening, Jill and I went on a familiar "sodie" run, picking up a quick fix of either Diet Mountain Dew or Diet Wild Cherry Pepsi (very specific). As I waited, a man came up to the window and asked if I had jumper cables. (Ahhhh, I groaned to myself. Not you again).
You see, a few weeks ago, I was filling up gas when a man approached and asked if I had jumper cables. (See a theme?) I very kindly said no (an honest statement) but he persisted, and persisted, and persisted. He said he wasn't a sleazy guy (despite him acting sleazy) but really needed jumper cables, or better yet, a ride down Colfax to his house. "I honestly need a lift", he said to which I replied, "and I honestly understand, but I honestly don't have cables and am honestly saying no, I can't help you out." Other days, I may have donned my sweet and wholesome, ne'er do no wrong Jill hat, but being sassy and sarcastic seemed more appropriate at the moment given certain stressful circumstances we'd just endured at the time (our mom's passing away). Tolerance was pretty low.
So, when I heard the famous line, "do you have jumper cables?..." my eyes twinkled and the feisty spirit took hold. You best remember your audience, my friend. He asked for cables, I said no. He stated that he honestly needed a jump or better yet a ride, and I said "Good lord, you asked me this a few weeks ago." "Who me?", he asked. "Yes, you. You're the same guy, who had the same problem, with the same stalled car or to be lifted to the same house. Same song and dance and my answer is the same. No." At least change the story for crying out loud! Might be more compelling.
Ummmm, perhaps I ought not antagonize folks on Colfax -- one of Colorado's notoriously seedy streets.
The irony is that Jill and I were on our way to pick up dad when our car stalled at a gas station. Guess who needed jumper cables...honestly. ;) Yeeeeahhhh, well.
~E
You see, a few weeks ago, I was filling up gas when a man approached and asked if I had jumper cables. (See a theme?) I very kindly said no (an honest statement) but he persisted, and persisted, and persisted. He said he wasn't a sleazy guy (despite him acting sleazy) but really needed jumper cables, or better yet, a ride down Colfax to his house. "I honestly need a lift", he said to which I replied, "and I honestly understand, but I honestly don't have cables and am honestly saying no, I can't help you out." Other days, I may have donned my sweet and wholesome, ne'er do no wrong Jill hat, but being sassy and sarcastic seemed more appropriate at the moment given certain stressful circumstances we'd just endured at the time (our mom's passing away). Tolerance was pretty low.
So, when I heard the famous line, "do you have jumper cables?..." my eyes twinkled and the feisty spirit took hold. You best remember your audience, my friend. He asked for cables, I said no. He stated that he honestly needed a jump or better yet a ride, and I said "Good lord, you asked me this a few weeks ago." "Who me?", he asked. "Yes, you. You're the same guy, who had the same problem, with the same stalled car or to be lifted to the same house. Same song and dance and my answer is the same. No." At least change the story for crying out loud! Might be more compelling.
Ummmm, perhaps I ought not antagonize folks on Colfax -- one of Colorado's notoriously seedy streets.
The irony is that Jill and I were on our way to pick up dad when our car stalled at a gas station. Guess who needed jumper cables...honestly. ;) Yeeeeahhhh, well.
~E
Chasing Treatment or Chasing Life
The last few days have been packed full with oncology visits, rounds, nurses taking vitals and evaluating Craig's breathing, palliative care meetings, and extremely sobering conversations. One week ago, Dr. Flaig noted that there was really only one viable treatment option left - Sutent - that Craig COULD try, albeit on a half dose given the greater toxicity of Sutent. He stated that Sutent was a possibility but it would only carry a ~20% chance of lending some benefit to Craig's process, and it was the harshest of treatments that Craig would try. In the end, we were likely looking at a "few long weeks". Though we all know that prognoses and predictions are not very useful, they did give Craig an idea of how acute his condition is when it seemed that it had not quite registered. Diane, Jill, Emily and I talked with Craig and how Sutent might fit within his stated goals of not wandering down the path of living life by hospital visits and doctor's appointments, but rather through fulfilling some of his true wants/needs/wishes. Last Monday, Craig decided he wanted a small break from treatment to recover but wanted to pursue Sutent to the extent it was helping and not hurting him and not taking from him the opportunity to really "live".
It was a tearful appointment, yet we left Monday's appointment with a renewed determination and zest to help bring the world to Craig, bringing life to him in a meaningful way so that he still has entertainment and enjoyment rather than a "monochromatic" life consumed by cancer. The night before the Dr. F appointment, we took him to see the latest Batman movie, and the nights following we filled with one activity after the other. The shifting energy was palpable and even altered how Craig referred to the passing days, replacing names of days with event titles. Tuesday became "Rockies Night", when we dressed up in Rockies attire and hit the stadium to watch America's favorite pastime -- baseball. Wednesday transformed into "Woody and Georgia Night", where we were entertained by Georgia and Woody's equally brilliant culinary skills and always enjoyable conversation. Thursday was double-billed as the "Day of Uno", when Craig skunked Emily in a rousing game of Uno, and "Dixon's Night", where we went to celebrate Mom's birthday (which I will talk about in more detail in a dedicated post). Friday would have been "Movie Day" with his friends, Steph and Steve, but it is now referred to as the "Pneumonia Moment", instead. Sunday was, of course, the "Benefit Concert Night". Since then, the colorful titles have faded and days seem to blur into one another apart from watching random movies and taking laps around the hallways.
The days in between have been admittedly hard, filled with emotional moments of finalizing living wills, talking about how hard it is living in a timeframe, and, the worst spectator sport of all, watching Craig come to terms with the realization that things are happening faster than expected and he will one day pass away from his cancer. It's an impossible reality I still have not fully grasped. How do you lose your Mom and your only brother...and, for Craig, how do you lose your Mom, as well as your own life in only a few months time? Such a f&*^ed up situation.
This Thursday would have been the target day for re-evaluating Craig's liver enzymes to determine if taking Sutent was still a safe and viable option. That milestone was moved forward a few days. I was with him yesterday morning when we learned from the attending doctor that his enzymes are passed the threshold for safely taking Sutent even at a half dose. Craig's protein levels are quite low indicating that despite the TPN used for nourishment, the supplemental nutrition can't keep up with the pace of cancer and he can no longer maintain adequate nutrition. This along with the poor liver function made it clear that treatment would do more harm than good and that seeking a quality life -- while there is still life left -- is priority.
Courage manifests in so many ways during one's trial with cancer - courage to defy cancer through seeking treatment; courage to withstand the side effects and stand beside "new normals" and new ways of living; courage to investigate new options when standard protocols are no longer effective; and, when "that" reality hits, the courage to shift energy from 'chasing treatment' to 'chasing life' in the time that is remaining. It is a courage I saw in Mom, and see in Craig.
Dr. Flaig paid a visit later in the afternoon and eloquently confirmed the attending doctor's earlier opinion. To talk about life and the end of life was sobering and grim. But it was a conversation Craig participated in with the same grace and courage he's shown throughout. I don't know how he does it, or Mom did it.... As I told him, if I have a son (or daughter for that matter), I'd hope he'd be something like Craig.
We are to comfort care measures, now. The tenor is one of wellness and symptom management, trying to give Craig the comfort and strength necessary to live well in the time he has left. We will treat symptoms of pain and nausea and no longer specifically target the cancer - come what may.
I'm reminded of lyrics from a Verve song later covered by Ben Harper. They came to mind during the end of Mom's process and now again with Craig: "Now the drugs don't work, they only make you worse but I know I'll see your face again".
Now, we are chasing the hell out of life....
~E
It was a tearful appointment, yet we left Monday's appointment with a renewed determination and zest to help bring the world to Craig, bringing life to him in a meaningful way so that he still has entertainment and enjoyment rather than a "monochromatic" life consumed by cancer. The night before the Dr. F appointment, we took him to see the latest Batman movie, and the nights following we filled with one activity after the other. The shifting energy was palpable and even altered how Craig referred to the passing days, replacing names of days with event titles. Tuesday became "Rockies Night", when we dressed up in Rockies attire and hit the stadium to watch America's favorite pastime -- baseball. Wednesday transformed into "Woody and Georgia Night", where we were entertained by Georgia and Woody's equally brilliant culinary skills and always enjoyable conversation. Thursday was double-billed as the "Day of Uno", when Craig skunked Emily in a rousing game of Uno, and "Dixon's Night", where we went to celebrate Mom's birthday (which I will talk about in more detail in a dedicated post). Friday would have been "Movie Day" with his friends, Steph and Steve, but it is now referred to as the "Pneumonia Moment", instead. Sunday was, of course, the "Benefit Concert Night". Since then, the colorful titles have faded and days seem to blur into one another apart from watching random movies and taking laps around the hallways.
The days in between have been admittedly hard, filled with emotional moments of finalizing living wills, talking about how hard it is living in a timeframe, and, the worst spectator sport of all, watching Craig come to terms with the realization that things are happening faster than expected and he will one day pass away from his cancer. It's an impossible reality I still have not fully grasped. How do you lose your Mom and your only brother...and, for Craig, how do you lose your Mom, as well as your own life in only a few months time? Such a f&*^ed up situation.
This Thursday would have been the target day for re-evaluating Craig's liver enzymes to determine if taking Sutent was still a safe and viable option. That milestone was moved forward a few days. I was with him yesterday morning when we learned from the attending doctor that his enzymes are passed the threshold for safely taking Sutent even at a half dose. Craig's protein levels are quite low indicating that despite the TPN used for nourishment, the supplemental nutrition can't keep up with the pace of cancer and he can no longer maintain adequate nutrition. This along with the poor liver function made it clear that treatment would do more harm than good and that seeking a quality life -- while there is still life left -- is priority.
Courage manifests in so many ways during one's trial with cancer - courage to defy cancer through seeking treatment; courage to withstand the side effects and stand beside "new normals" and new ways of living; courage to investigate new options when standard protocols are no longer effective; and, when "that" reality hits, the courage to shift energy from 'chasing treatment' to 'chasing life' in the time that is remaining. It is a courage I saw in Mom, and see in Craig.
Dr. Flaig paid a visit later in the afternoon and eloquently confirmed the attending doctor's earlier opinion. To talk about life and the end of life was sobering and grim. But it was a conversation Craig participated in with the same grace and courage he's shown throughout. I don't know how he does it, or Mom did it.... As I told him, if I have a son (or daughter for that matter), I'd hope he'd be something like Craig.
We are to comfort care measures, now. The tenor is one of wellness and symptom management, trying to give Craig the comfort and strength necessary to live well in the time he has left. We will treat symptoms of pain and nausea and no longer specifically target the cancer - come what may.
I'm reminded of lyrics from a Verve song later covered by Ben Harper. They came to mind during the end of Mom's process and now again with Craig: "Now the drugs don't work, they only make you worse but I know I'll see your face again".
Now, we are chasing the hell out of life....
~E
Making the most of it
(Written Monday, July 28)
I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
~Gilda Radner
It’s 4:30; we’re sitting in Craig’s room waiting for Dr. Flaig. Dad flew in yesterday after hearing of Craig’s pneumonia. He had booked a flight for this coming Friday, but I called over the weekend asking him to come sooner. We’ve been passing the time reading, discussing Christian Bale’s recent troubles (his mom used to be a circus dancer…when, if ever, is there dancing at the circus???) and talking with C, though he’s been pretty groggy. He just got off the phone with Steve where he was the most emphatic I’ve heard him in a while.
The doctors broke the news earlier this morning that Sutent won’t be possible. And with a gentle swoop, we’re left with neither a floor nor ceiling. Despite reducing his TPN and cutting back on meds (includind chemo) Craig’s liver enzymes have worsened. Though we had suspected this, it’s still heartbreaking to know we’ve come to the end -- our backs are finally against the wall. One would expect an astonishing loss of form given the emotional trauma we’ve all endured this year. Hearing the words “we’ve done all we could” so soon after mom is, needless to say, difficult. But, we’re handling it as best we can.
This latest news hasn’t registered with C emotionally (as he says) because of all the drugs. Still, he’s aware of what this means and is determined that we now focus on doing the things he wants to do, and on comfort care, namely managing his pain. He's been complaining of new pain to the right of his sternum, and earlier, the doctor could hear something (maybe a tumor?) rubbing against his stomach wall. Craig now wears a licoderm patch over the area, to help with the pain. He’s been groaning a lot more in his sleep, and his breathing has grown shallower, forcing him to wear an oxygen mask.
We’ve assumed our positions at his bedside (for the time being). Sometimes, I’ll catch myself watching his chest just to make sure he’s breathing. Just like with mom, we’re now ‘watching’ for signs of the near end. Though Craig still has time ahead of him, it’s easy to fall back into old habits. After all, it was only a month ago we had to do the same with mom. I can remember so vividly the Saturday just before she passed. She was still conscious and able to communicate, but starting to decline. I remember watching her chest expand with each breath from my perch on the couch. On a few occasions, she’d stir and open her eyes. I’d quickly stand up to get in her line of view, and grab her hand to let her know I was there. I’d whisper ‘hey mom’ as I did so many times before. That night, she whispered back. I remember falling asleep to her breathing, which was growing raspier by the hour.
It’s hard not to draw parallels with C, or feel the same pressure on the chest when the time between breaths seems to drag on for ages. But, Craig’s not mom. He’s still with us and, for the most part, himself. He’s been visiting with friends – two of his blues friends stopped by to visit – and we’ve been taking long strolls down the hall whenever he’s felt inspired. His newfound energy has been applauded with “looking goods,” “hey motorboat,” and “look who’s out of bed” from his nurses and doctors. He even made a few wisecracks reminiscent of his old sarcastic self. Craig rarely smiles or laughs; to get a chuckle from him is like winning the lottery. For the lucky person who cracks the code, it's instant respect, at least for the day.
Jason Ricci said during the jam that Craig hasn’t let this get him down. He hasn’t. He’s getting on with the rest of his life, however long it may be. Like I told C this morning, we’re in it for the long-haul. We’re now moving forward with some of the plans we’ve had to put on hold for various reasons. Depending on whether he's discharged, we hope to take him to the mountains this weekend, followed by some live music. We’re going to do all we can to make sure his needs are met -- that’s the least we can do. -- J
Sold Out!!--Thank You Jason Ricci and Boulder Outlook
It's not often people get a chance to witness the outpouring of support and love they have around them. And it's not often people have the opportunity to show someone what they mean to them. Strangely, we typically reserve such displays of affection for after the fact, reserving what needs to be said until after a person's gone. But, feelings are always purest in the hour of meeting, and in the presence of a loved one. Sunday's benefit concert was truly a gift; it was an opportunity to say what needed to be said, and do what needed to be done. It was a gift for Craig to feel the love around him, and a gift for the hundreds there to show Craig how special he is, and to so many.
Everyone was there, minus C. Despite trying with all his might to get better, C was unable to make the trip. In fact, he's still in the hospital, after being diagnosed with pneumonia on Friday. It was hard seeing his disappointment, but no one at the jam would have wanted C to rush out of the hospital and sacrifice his health just to be in attendance. Thoreau once said, "Nothing makes the earth seem so spacious as to have friends at a distance; they make the latitudes and longitudes." Yes, yes, yes but that was before the internet, Henry David. With the Lawlers, there's always a plan B, C, and D, if need be. Knowing Craig wouldn't be able to come, we brought the jam to him through the wonders of the internet. Just before Emily, Erin, Diane and I headed out, we rigged Craig's computer with Skype and affixed a camera to the top. My computer already had Skype and a camera, so with two Skypes and two cameras, we were able to patch Craig through. He was able to see and hear everything, as if he was sitting beside us. Friends could wave and say hello as if he was there.
We knew it was going to be a great night by the size of the crowd. At 6:15, the place was already three fourths full, and the show hadn't even started. Just before the music started, Diane and I got up to thank the crowd and to let them know that Craig was in attendance ‘virtually', while Erin managed our technology. Throughout the night, friends stopped by to wave at him via Skype. We had friends leave messages to C on the Harpin' for Help flyers Erin created just before. We also recorded the event, as did the Boulder Outlook. (DVDs will be available for purchase within the next few days -- proceeds will go to Craig.)
Over ten musicians signed on to honor Craig, including Otis Taylor, a well-known blues musician based out of Boulder. A six year harmonica player and thirteen year old guitarist also took the stage for their own jam. (It was hard watching the six year old play. We thought of Craig as a father, and wondered if his son would take up the harmonica like him.) All the musicians were absolutely amazing. To know they were all playing for Craig was inspirational, and overwhelming. The jammers established a nice energy for the rest of the evening, and kept the swelling crowd entertained well beyond 8p.m. By the time Jason Ricci took the stage with Otis Taylor, the Boulder Outlook's restaurant was sold out, and they were turning people away. Folks from Craig's harmonica club attended, as did Craig's colleagues and friends from Sherman and Howard, the Court, and the US Trustees. Old blues buddies from Craig's many years of jamming the Denver circuits were in the crowd; one friend flew in from Seattle just to see Craig.
Jason Ricci and the New Blood began their set around 10p.m., and didn't stop until after midnight. To say these guys are talented is like saying Big Bird is tall, or the Incredible Hulk has muscles; they're phenomenal. What Jason does with the harmonica is otherworldly. He seemed so familiar with it, like it was an extension of his body. His stage presence was perfect; his support to Craig heartwarming. I felt like I was seeing Craig on stage, hearing his voice through Jason's harmonica. He opened with a song that included a shout out for people to ‘holler for Craig Lawler'. You could feel the emotion in every note; he put everything into it, not leaving to doubt his support for Craig. The music was sometimes interrupted by a "we love you Craig"; a nice reminder of why we were there. We could feel Craig's presence with each crescendo.
The music was able to introduce Craig in a way that words alone couldn't. As Jason said, he's an old soul; the blues run through him. Craig picked up the harmonica in undergrad under the patient tutelage of Watermelon Slim, Craig's first instructor. He continued to hone his skills throughout law school, playing harp during Ann Arbor's various jam nights. As soon as he moved to Denver in 2002, Craig linked up with a few local artists and began playing at some of Denver's blues bars. He's been playing ever since. The harmonica has helped Craig through the best and worst of times, and has helped add definition to various aspects of his life. His passion for music has led him to the most obscure places of Ghana, Thailand, and Viet Nam, to name a few, where he discovered unique instruments like the Kalimba and the Khan that have only expanded his musical repertoire. Like Jason, Craig's love for music in general and the blues in particular, is raw and exposed. With music, Craig puts his entire self out there, unreservedly. Each song exposes his vulnerabilities for people to take or leave.
Whether through the blues or through his natural charm, Craig has touched so many. It was a gift for us to be witness to all the love and support for Craig. One of Craig's blues friends said early on that it was going to be a wonderful night, and that there was already a lot of love in the room. With beautiful music and a sold out performance, I'd say he was right.
Thanks to Dan, Honey and the Boulder Outlook Hotel for putting this on. We consider you family.
Thanks to the jammers for filling the room with such beautiful music; your music brought Craig closer to us all.
Thanks to Jason Ricci and the New Blood for hauling 600 miles to play in Craig's honor. You have four new groupies! Jason, you will forever be in our hearts. We're grateful, beyond words... sincerely.
Thanks to the hundreds who contributed their words and money (we raised over $2300!!) to Craig's care. Your support is helping Craig live as normal a life as possible. We're overwhelmed by your compassion and generosity.
To all who helped make Sunday special, and who have supported Craig throughout his process: thank you! Craig is truly touched, as are we. You're our wall, our "something to lean on" during this tough time. Thanks for being there. We'll continue to need your support. -- J
Everyone was there, minus C. Despite trying with all his might to get better, C was unable to make the trip. In fact, he's still in the hospital, after being diagnosed with pneumonia on Friday. It was hard seeing his disappointment, but no one at the jam would have wanted C to rush out of the hospital and sacrifice his health just to be in attendance. Thoreau once said, "Nothing makes the earth seem so spacious as to have friends at a distance; they make the latitudes and longitudes." Yes, yes, yes but that was before the internet, Henry David. With the Lawlers, there's always a plan B, C, and D, if need be. Knowing Craig wouldn't be able to come, we brought the jam to him through the wonders of the internet. Just before Emily, Erin, Diane and I headed out, we rigged Craig's computer with Skype and affixed a camera to the top. My computer already had Skype and a camera, so with two Skypes and two cameras, we were able to patch Craig through. He was able to see and hear everything, as if he was sitting beside us. Friends could wave and say hello as if he was there.
We knew it was going to be a great night by the size of the crowd. At 6:15, the place was already three fourths full, and the show hadn't even started. Just before the music started, Diane and I got up to thank the crowd and to let them know that Craig was in attendance ‘virtually', while Erin managed our technology. Throughout the night, friends stopped by to wave at him via Skype. We had friends leave messages to C on the Harpin' for Help flyers Erin created just before. We also recorded the event, as did the Boulder Outlook. (DVDs will be available for purchase within the next few days -- proceeds will go to Craig.)
Over ten musicians signed on to honor Craig, including Otis Taylor, a well-known blues musician based out of Boulder. A six year harmonica player and thirteen year old guitarist also took the stage for their own jam. (It was hard watching the six year old play. We thought of Craig as a father, and wondered if his son would take up the harmonica like him.) All the musicians were absolutely amazing. To know they were all playing for Craig was inspirational, and overwhelming. The jammers established a nice energy for the rest of the evening, and kept the swelling crowd entertained well beyond 8p.m. By the time Jason Ricci took the stage with Otis Taylor, the Boulder Outlook's restaurant was sold out, and they were turning people away. Folks from Craig's harmonica club attended, as did Craig's colleagues and friends from Sherman and Howard, the Court, and the US Trustees. Old blues buddies from Craig's many years of jamming the Denver circuits were in the crowd; one friend flew in from Seattle just to see Craig.
Jason Ricci and the New Blood began their set around 10p.m., and didn't stop until after midnight. To say these guys are talented is like saying Big Bird is tall, or the Incredible Hulk has muscles; they're phenomenal. What Jason does with the harmonica is otherworldly. He seemed so familiar with it, like it was an extension of his body. His stage presence was perfect; his support to Craig heartwarming. I felt like I was seeing Craig on stage, hearing his voice through Jason's harmonica. He opened with a song that included a shout out for people to ‘holler for Craig Lawler'. You could feel the emotion in every note; he put everything into it, not leaving to doubt his support for Craig. The music was sometimes interrupted by a "we love you Craig"; a nice reminder of why we were there. We could feel Craig's presence with each crescendo.
The music was able to introduce Craig in a way that words alone couldn't. As Jason said, he's an old soul; the blues run through him. Craig picked up the harmonica in undergrad under the patient tutelage of Watermelon Slim, Craig's first instructor. He continued to hone his skills throughout law school, playing harp during Ann Arbor's various jam nights. As soon as he moved to Denver in 2002, Craig linked up with a few local artists and began playing at some of Denver's blues bars. He's been playing ever since. The harmonica has helped Craig through the best and worst of times, and has helped add definition to various aspects of his life. His passion for music has led him to the most obscure places of Ghana, Thailand, and Viet Nam, to name a few, where he discovered unique instruments like the Kalimba and the Khan that have only expanded his musical repertoire. Like Jason, Craig's love for music in general and the blues in particular, is raw and exposed. With music, Craig puts his entire self out there, unreservedly. Each song exposes his vulnerabilities for people to take or leave.
Whether through the blues or through his natural charm, Craig has touched so many. It was a gift for us to be witness to all the love and support for Craig. One of Craig's blues friends said early on that it was going to be a wonderful night, and that there was already a lot of love in the room. With beautiful music and a sold out performance, I'd say he was right.
Thanks to Dan, Honey and the Boulder Outlook Hotel for putting this on. We consider you family.
Thanks to the jammers for filling the room with such beautiful music; your music brought Craig closer to us all.
Thanks to Jason Ricci and the New Blood for hauling 600 miles to play in Craig's honor. You have four new groupies! Jason, you will forever be in our hearts. We're grateful, beyond words... sincerely.
Thanks to the hundreds who contributed their words and money (we raised over $2300!!) to Craig's care. Your support is helping Craig live as normal a life as possible. We're overwhelmed by your compassion and generosity.
To all who helped make Sunday special, and who have supported Craig throughout his process: thank you! Craig is truly touched, as are we. You're our wall, our "something to lean on" during this tough time. Thanks for being there. We'll continue to need your support. -- J
The Luke to my Lea (minus all the gross kissy-face)
Just finished hard talk #547 with the palliative care team. Seems like we're getting closer and closer to the elephant in the room. Pretty sad shit. How this is happening so close to Mom's death, I will never understand. Anyway, we're getting closer to the end of Craig's life and he's not ready yet. I'm not ready yet. It's got me thinking and reminiscing about our childhood together; how we'd play Star Wars and run around in our underoos pretending to be superheros. When I was looking at some old pictures of us, I was reminded how much I used to follow him around as a little girl. Cub scouts, I was there in the background. Star Wars theme birthday parties, I had my cape, too. When Craig was dressed in full-on Wookie-wonder for Halloween, there I was, cinnamon roll buns on my head as Lea. Methinks I was probably NOT invited, but there I was anyway, the ultimate pesky little sister, relishing being in Craig's shadow. I still feel that way for the most part. Can never tell if he likes me being around or is just tolerating my presence, but it doesn't really matter. Pesky little sisters don't care about those minor details ,)
D
P.S. I didn't include Jill and Erin in the above memories for several reasons. A) they are hardly the stand-in the shadow types. B) they were usually beating the both of us up. C) I'm still resentful about the numerous purple-nurples and choke holds. So you can write your own memories, J and E. Ha-rumph!
D
P.S. I didn't include Jill and Erin in the above memories for several reasons. A) they are hardly the stand-in the shadow types. B) they were usually beating the both of us up. C) I'm still resentful about the numerous purple-nurples and choke holds. So you can write your own memories, J and E. Ha-rumph!
Monday, July 28, 2008
Thank You, Stillwater!
I've been waiting for the final total from the benefit in Stillwater before sending out this thank you. You (everyone who participated) raised over $2500! What this means to us, I can't even begin to convey. I felt overwhelmed that Saturday when Steph was telling me who came and about all the people who sent their thoughts our way. Thank you. From the bottom of my heart, thank you. My mom would have been so pleased and proud.
Also, I want to recognize the students that my mom worked with In Upward Bound who came and shared their thoughts. My mom loved working with all of you and hoped that each of you would achieve your dreams.
And lastly, thank you to my "bestest" friend, Stephanie, her family, the Durhams and Katie Musset for putting it all together and working their asses off on a hot Oklahoma morning! It is inspriring to see what people can do when they come together to help others.
Thanks!
D
Also, I want to recognize the students that my mom worked with In Upward Bound who came and shared their thoughts. My mom loved working with all of you and hoped that each of you would achieve your dreams.
And lastly, thank you to my "bestest" friend, Stephanie, her family, the Durhams and Katie Musset for putting it all together and working their asses off on a hot Oklahoma morning! It is inspriring to see what people can do when they come together to help others.
Thanks!
D
Sunday, July 27, 2008
Keeping him cool
(Written Saturday, July 26)
Craig: "My pillow case is wet."
Me: "Here, I'll get you a new cover, but the plastic pillow underneath is also soaked. The pillow may still be wet."
Craig's been restless all morning. He's sweating profusely, but doesn't have a fever. With the sweat comes the rash: his forehead is taking the brunt of it, but the cheeks also seem slightly raised. We've been trying to cool him down with ice packs to the groin and fans in the face. Diane and I served as makeshift fans, using sheets of paper to cool him down. We've even turned the AC down to a cool 53. Still, Craig seems uncomfortable. He's been complaining more and seems a tad irritable. He even called a food service worker (yes, they're back) an ‘inappropriate' word today, when she accidently left his door open. Thankfully, she was well past earshot when he piped in. (Actually, his one word demonstrated a fair level of restraint; I would have told them to piss off long ago). Then, yesterday, he called an ER nurse a freak after the guy left his room in a cheery blaze. Fair enough; the guy was weird, and talked as if he used to work summers at Disney World playing Goofy. Perhaps the loud and overly chipper "other than all this, buddy, what else have ya been up to?" would be better received by younger audiences - say, three year olds.
Befogged by pain meds, C has never before lost his manners, though he could grow hazy on other details. I think this latest trip to the hospital has been the proverbial straw on the camel's back. We've been bouncing from one hospital room to another; the routine is bound to become tiresome. Being in the hospital is particularly annoying, given tomorrow's benefit concert. So, he's letting his frustrations out verbally. Good for him. Better for the frustration to be out than bottled inside. Always well-timed, Craig's outbursts often interject much needed humor into an otherwise tense situation.
I told the nurses to take Craig off food service in order to spare the poor food runners a tongue lashing. We'll see if it worked. -- J
Saturday, July 26, 2008
Catching Flies
(written earlier today. july 26th)
It's 3:00pm Saturday afternoon. Most folks are enjoying the warm comforts of a Colorado summer -- tooling about on their road bike this weekend instead of their mountain bike, or sipping iced chais on the "banks" of confluence park while their dog splish splashes in the quiet rapids. For us, we are back in the cold comforts (thanks to the blasting air conditioner) of the 11th floor oncology unit. We've been passing the day sitting quietly, peacefully reading a book or writing as Craig sleeps with his mouth wide open -- flies could take shelter and he wouldn't be the wiser. I'm watching his eyes pace back and forth, locked in an REM cycle; his brow is soaked with sweat. A nasal cannula pumps 3 liters of oxygen into his nose to supplement his oxygen intake since the tumor bulk in his belly has compressed (and diminished) the lower part of his lungs, preventing them from inflating fully. On occasion, he breaks his sleep with a loud whimper; we respond in concert with an "are you OK?". He just woke up and noted that he feels like there is a hole burned into his stomach.
This has been our Saturday just like so many Saturdays in the past. There's no place we'd rather be than by his side, but I guaran-damn-tee Craig would much rather not be there. As Jill noted, it took a heavy dose of patience and careful prodding of the palliative care representative before the details of his infection finally struck a chord. The conversation seemed to drip along like wet cement and the two options seemed just as permanent. It came down to life and death -- whether he was ready to let the natural course of things take flight or whether he wanted further treatment. I remember thinking to myself that 'Craig isn't getting it' and wondering how we could present this simply, honestly, and in a way that wouldn't absolutely panic him. It was a heartbreaking and startling conversation, through and through. We weren't talking about a simple earache or an angry looking splinter; we were talking about his very fragile life -- one that is increasingly challenged each day. Fortunately, we know Craig well and know that he would have wanted antibiotics if he fully understood his present condition -- even if it meant going back to the dreaded hospital. I finally just asked how critical his condition was and what would happen if he didn't go -- point blank.
So, here we are, lounging in room 1102. Two empty antibiotic bags hang from Craig's IV stand with more on the way.
~E
It's 3:00pm Saturday afternoon. Most folks are enjoying the warm comforts of a Colorado summer -- tooling about on their road bike this weekend instead of their mountain bike, or sipping iced chais on the "banks" of confluence park while their dog splish splashes in the quiet rapids. For us, we are back in the cold comforts (thanks to the blasting air conditioner) of the 11th floor oncology unit. We've been passing the day sitting quietly, peacefully reading a book or writing as Craig sleeps with his mouth wide open -- flies could take shelter and he wouldn't be the wiser. I'm watching his eyes pace back and forth, locked in an REM cycle; his brow is soaked with sweat. A nasal cannula pumps 3 liters of oxygen into his nose to supplement his oxygen intake since the tumor bulk in his belly has compressed (and diminished) the lower part of his lungs, preventing them from inflating fully. On occasion, he breaks his sleep with a loud whimper; we respond in concert with an "are you OK?". He just woke up and noted that he feels like there is a hole burned into his stomach.
This has been our Saturday just like so many Saturdays in the past. There's no place we'd rather be than by his side, but I guaran-damn-tee Craig would much rather not be there. As Jill noted, it took a heavy dose of patience and careful prodding of the palliative care representative before the details of his infection finally struck a chord. The conversation seemed to drip along like wet cement and the two options seemed just as permanent. It came down to life and death -- whether he was ready to let the natural course of things take flight or whether he wanted further treatment. I remember thinking to myself that 'Craig isn't getting it' and wondering how we could present this simply, honestly, and in a way that wouldn't absolutely panic him. It was a heartbreaking and startling conversation, through and through. We weren't talking about a simple earache or an angry looking splinter; we were talking about his very fragile life -- one that is increasingly challenged each day. Fortunately, we know Craig well and know that he would have wanted antibiotics if he fully understood his present condition -- even if it meant going back to the dreaded hospital. I finally just asked how critical his condition was and what would happen if he didn't go -- point blank.
So, here we are, lounging in room 1102. Two empty antibiotic bags hang from Craig's IV stand with more on the way.
~E
Torture in the key of ouch--E
If Craig held the answer to Carly Simon's mystery subject in "You're So Vain", he would have spilled the beans long ago with a simple threat of his worst enemy -- sticky medical substances. You could eek out national security secrets if it spared him one second of having to tear precious hair from his skin. It's amazing!! It's probably pretty cold and insensitive to say Craig's a whimp when it comes to tape, but..... Wow. It could be anything from band-aids to surgical tape. Today, it was the dreaded EKG pads leftover from when they monitored his racing heart yesterday evening. He could be drugged off his gourd but will still rise to the occasion to swat away any wayward hands heading in the direction of the sticky tape. He's the only one who has the finesse, patience and gentle hands to peal each microscopic fiber from his skin. As he said, "Mom wouldn't have shown as much mercy." She would have yanked those suckers off along with skin if she had to. Maybe, she would have warned ahead with a quick "hold still", which somehow made her "nurse Mary" moments worse. This -- perhaps, just maybe -- led Craig to be the skittish, tape-fearing gent that he is today. I (and I think Diane and Jill) have a similar fear of those nasty hair rubberbands with the balls on them. Mom would knock those against my head after pulling every strand of hair into an always attractive waterspout. ;) Memories...fond, fond memories.
Jill and Emily tried to help Craig with the half dozen EKG patches; even a nurse was there with her adhesive remover. No dice. This was one man's battle against the evildoer EKGs. After 20 minutes of using the edge of scissors to carefully "shave" the hair, he was free at last.
Note to self: buy economy size Nair for Craig...
~E
Jill and Emily tried to help Craig with the half dozen EKG patches; even a nurse was there with her adhesive remover. No dice. This was one man's battle against the evildoer EKGs. After 20 minutes of using the edge of scissors to carefully "shave" the hair, he was free at last.
Note to self: buy economy size Nair for Craig...
~E
Ticking off the wishes
With help from our cousin Woody, as well as from Greg Feasel and Jim Kellogg of the Rockies management, we were able to tick one “wish” off Craig’s to do list. Last Tuesday, we took Craig to a Rockies game. All decked out in our Rockies gear, we arrived at the ball park just in time to watch batting practice from the diamond just behind home plate. Wheeling Craig onto the field was beyond surreal. From the field, one could get an understanding of the power needed to hit a home run. Impressive. Had a virtual bus load of life-like giants not been on the field hitting balls (big and brawny just doesn’t describe), I might have stormed homeplate to do my best Cerrano impersonation from a Major League: “If you no help me now, I say ‘[Screw] you, Joboo.’ I do it myself…” Or better yet, a scene from Bull Durham. A tad risqué, perhaps. In any event, it would have looked a little strange reliving lame 1980s flicks -- not so cool -- and it was Craig’s day, after all. Though E and I did spend A LOT of time playing baseball out back -- high five to the poodles who were our quasi outfielders -- it didn’t seem appropriate to steal his thunder.
After a few minutes watching batting practice, we met up with Matt Holliday, an old classmate from high school, whom we haven’t seen in ten years (which he pointed out). Matt wrote Craig a get well letter a few months back, so it was nice to thank him in person. We chatted about an old All-State picture Erin found recently with all of the athletes from our year, including Matt; Erin and I were swimmers at the time. It’s interesting to consider where we’ve all ended up from our Stillwater upbringings, and how, for a moment, high school could be just a memory away.
After BP, we (Craig, the sisters, Emily and her mom) stayed to watch the Rockies trounce the Dodgers from our seats on the first base line. (We’re rootin’ for another World Series run). Craig lasted until the 7th inning before he had to tap out and head home. We were impressed he lasted seven innings, especially given how long we had been out in the Colorado sun. Heading to the venue, he declared in a spirited voice, "I'm feeling really good right now." It seemed that feeling carried him through 4-5 hours. Nice memories.
Thanks to Woody, Greg Feasel, Jim Kellogg, and Matt Holliday for making Tuesday special. One wish ticked off; the second should “go down” tomorrow. We had discussed a benefit concert a few months back, but I only called Jason Ricci a week ago, after we learned Craig's tumors were on the move. I can’t believe it has come together so quickly. A big pre- thanks to Jason Ricci and the New Blood for ‘going the distance’ in supporting Craig; it means more than you know. And another pre-thanks to Dan King and the Boulder Outlook Hotel for putting this together – we’re overwhelmed by your generosity. And lastly, a big pre-thanks to all who will turn out tomorrow; your support allows Craig to live as normal a life as possible, from the comforts of his home. Though this is technically a surprise, I think it still counts as a wish – or at the very least, something special for Craig. We’re looking forward to tomorrow … -- J
Fanning of the Craig
As I write, Jill and Diane are fanning Craig who is suffering hot sweats from pneumonia and/or tumor induced fevers. The plot thickens with a patient room that doesn't appear to have a functioning air conditioner. So, Jilly and Diane grabbed their best pieces of paper and went to it, boldly wandering down a path of repetitive motion injuries in the wrists, elbows and shoulders. But, did they take a knee? No ma'am. Noooo ma'am. Fan they did for a good 5 minutes until the smart one in the family (yours truly) suggested placing an ice pack on his groin -- seemed like a less stress inducing/intensive way of cooling a brother down but that's just me thinking out loud...
He's still hot, and reminds us every minute or so, but at least the ice pack is helping!! ~E
He's still hot, and reminds us every minute or so, but at least the ice pack is helping!! ~E
Idle on the Flipside
And, just as quickly things change. We’re back in the hospital after a rocky Friday. Craig awoke yesterday morning with a slight fever and moan-inducing pain. Though we pumped him with Oxycodone, by noon, he was still uncomfortable. He also awoke with a nasty rash on his face, which only worsened as they day progressed. Not wanting to take any chances, I called the Pathways nurse for a consult, and she agreed to stop by later in the afternoon to examine Craig. Her timing couldn’t have been better.
Earlier yesterday afternoon, Craig aspirated on his vomit during a Friday matinée. Perhaps he just didn’t like the X-Files (wouldn’t blame him) and was giving ol’ David D. the what for. In any event, Craig “got sick” (a sanitized version of vomited) just before the show started, and was unable to make it to the bathroom in time; hence, the swallowing attempt. The vomiting set off a coughing episode which lasted until the Pathway’s nurse arrived.
Earlier yesterday afternoon, Craig aspirated on his vomit during a Friday matinée. Perhaps he just didn’t like the X-Files (wouldn’t blame him) and was giving ol’ David D. the what for. In any event, Craig “got sick” (a sanitized version of vomited) just before the show started, and was unable to make it to the bathroom in time; hence, the swallowing attempt. The vomiting set off a coughing episode which lasted until the Pathway’s nurse arrived.
The Pathways nurse entered the room and, as Erin noted, whispered “shoot” at first sight of Craig, and took a seat on her knees just by his bedside. After taking his temperature (measuring 101). and vitals, she suggested that he most likely had an infection, and that, unless he’s ready to "throw in the towel" (her words), he should go to the hospital. Not understanding the gravity of having an infection, Craig was initially reluctant to go, especially since he left the hospital just a week ago. In general, Craig has a difficult time inferring aspects of his disease from euphemisms and veiled warnings of imminent impairment. This is understandable. He’s a young guy fighting for every day he has. Unless someone comes out and says “This is what’s happening, and these are the options and likely scenarios” Craig’s going to feel as though his symptoms “aren’t that bad.” He often downplays his symptoms, as if calling attention to them makes them more real (also understandable). [As example, he just told me he's been having pain (level 6) after urinating, and that he feels like he can't empty his bladder completely. I told the nurse, and she followed up. He told her he was able to empty his bladder and that the pain 'wasn't that bad'. I interjected and told her what he mentioned just a few minutes prior. He responded: "oh yeah, that." It's like pulling teeth, I swear to Jesus. ;)]
To be honest, getting C to understand where he is in the process has been difficult. This is his process; his life; and his body that’s slipping away from cancer. He's been "living sick" since February, and has had to feel the pain, and now see the growth of the tumors, on a daily basis. Coping processes vary; Craig has put himself into fighting this disease, and up until a few weeks ago, believed he had several years ahead of him. Hope is important. People have turned the corner, so why not Craig. But, with advanced cancer, there comes a time when expectations have to be modified to fit what's realistic. The palliative care team at Uni. C helped mom come to terms with her process. Likewise, Dr. F. helped C understand his new reality this past Monday. Though it's a hard reality to embrace, we're now able to talk about his goals and wishes more freely. Still, though he now knows he's not looking at years, it's hard for him to understand that any one problem could be life threatening. Hence, the initial reluctance to go to the hospital.
After beating around the bush, Erin finally asked the Pathways nurse to clarify her statement (to speak in terms of criticality as in 'if he did not go in, then this would be the likely result') since it seemed Craig didn't understand the severity of his illness. She told C that if he didn't treat the infection, it'd likely take his life. At that point, C agreed to go. So, around 5 p.m., we grabbed Craig’s blue bag and headed out on 1-25 towards the hospital. While en route, I spoke with the oncology attending and asked that they help expedite Craig’s process. Within three hours, we were up on the 11th floor, our fastest turnaround yet. And sure enough, his chest x-ray showed pneumonia. He’s now on a host of antibiotics, which should also kill other possible infections he may have in the fluid surrounding his abdomen and in the pleura sac surrounding the lungs (which has increased slightly). They considered tapping the fluid, but have decided against it, since there’s a) not enough fluid to tap; and b) would be a temporary fix.
So now, we wait. The date hasn’t been lost on us. Just a month ago, mom succumbed to her illness from what we believe was a mystery infection. Craig’s in a different place. I think they’ll likely discharge him in time for tomorrow’s concert. Still, this recent trip is a reminder that Craig’s body is more susceptible to infections, which, at any point, could take his life. Though C has allowed the hospital to place a purple band on his arm indicating Do Not Resuscitate, it’s clear that this isn’t his time, and he’s not ready to “throw in the towel”. Who would? Maybe there will be a time in the near future where we’ll need to sit by and let the process take its course. But why rush the process? If his infection is treatable, it makes sense to pursue antibiotics. As C said, it's hard living on a time frame; he's made it clear that time, however much, is valuable, and that he's not ready to "throw in the towel" just yet. Treating this infection allows Craig to buy more time.
Coming to terms with your own death is a process that can’t be rushed. Nor can it be completely understood. I feel there’s a certain amount of pressure for people at the end stages to stop trying, as if to continue is some selfish desire to keep going, or worse, an indication of denial. Defied by his symptoms, derided by his cancer, and dismissed by most of his chemo agents, it must be hard to muster the energy to lobby for more days. And to have to explain to healthy people the rationale for continuing in the face of death must be particularly grating. I can’t fathom the spectrum of emotions Craig must be feeling, and if I were in his position, I'd likely do the same. Still, as an outsider, it’s hard to see him in pain, and to witness his fight, knowing all along the outcome. I feel like the proverbial helpless by-stander, with all the gusto, zeal and nervous energy, but no power to help. I'm having a hard time understanding how, after all the talk about a 0% recurrence, Craig is now dying of cancer -- that he’s nearing the end of his process. Intellectually, we understand it, and can see the cancer physically taking its course. But it’s still hard to accept, especially for Craig.
Like Mom, we'll know when the time comes, and he’ll be the first to tell us. Until then, he still has goals and dreams, and so long as it’s reasonable and doable, we’ll be there to make sure his wishes are fulfilled. If that means more trips down I-25, then so be it. -- J
Friday, July 25, 2008
Jam Session to Precede Concert (take II)
The Boulder Outlook Hotel will be hosting a jam session at 6:30 (just before the benefit concert) with 2008 IBC winner Lionel Young hosting. The jam performers will be limited to only a few artists (i.e. no sign up sheet), but the performance itself will be open to the public. The jam session will feature some of the area's finest, including Jill Watkins, Jack Hadley, Gretchen Troop, Al Chesis, Bryan Gordon, Jay Forrest, Ronnie Shellist (possibly with Jeremy Vasquez). Jam sessions were Craig's second home back in the day, so he'll be itching to go.
Where the evening goes after JR&NB take the stage is anyone's guess, but Jason seemed open to some jamming as well. As it is, it looks like four straight hours of uninterrupted music. The response is huge, so the Boulder Outlook advises arriving early, probably by 6:00 to get a seat.
Should be a great time. So, to all who are interested, please come and show your support. See you Sunday!
-- J
Where the evening goes after JR&NB take the stage is anyone's guess, but Jason seemed open to some jamming as well. As it is, it looks like four straight hours of uninterrupted music. The response is huge, so the Boulder Outlook advises arriving early, probably by 6:00 to get a seat.
Should be a great time. So, to all who are interested, please come and show your support. See you Sunday!
-- J
Thursday, July 24, 2008
The Suspense is Killing Me
I’m watching Emily slam Craig in yet another suspenseful game of Uno. It seems all the days lying in the hospital, cross-training on ‘wild card’ and ‘skip once’ moves, hasn’t paid off. She’s simply too good and getting him on the blues. Like I told C, nobody said she’s nice. Accept, I think she just took back a blue, just to give the guy a break; it looks like he has the whole stack in his hand, but apparently, no blingin’ blues. Aw, the travesty, and Emily’s just laughing her way through. Typical Jensen behavior.
Despite his poor form, it’s nice to see him ‘up and at ‘em’ after spending most of last week in the hospital. He’s had more energy since discontinuing his chemo (and starting the Ritalin), and though his legs and belly remain swollen and achy, he hasn’t complained of pain. We’re hoping this continues at least until Sunday for him to enjoy his special day with friends. We’ll head up to Boulder tomorrow to give him some time to recover from the road trip. The swelling makes him a bit road-weary, but nothing a few stop-and-stretches couldn’t cure (or at least help). After that, it’s off to the mountains for a spell. Just taking it one day at a time…
Holy hades. I can’t believe it. Craig just said Uno. Is Emily taking one for the team, or has he really come from behind? The suspense is overwhelming. ... And indeed, Craig has just done the unthinkable. One hour and four deck shuffles later, Craig has just placed his last card for the ultimate Uno comeback. That’s what you call keeping your head in the game. -- J
Despite his poor form, it’s nice to see him ‘up and at ‘em’ after spending most of last week in the hospital. He’s had more energy since discontinuing his chemo (and starting the Ritalin), and though his legs and belly remain swollen and achy, he hasn’t complained of pain. We’re hoping this continues at least until Sunday for him to enjoy his special day with friends. We’ll head up to Boulder tomorrow to give him some time to recover from the road trip. The swelling makes him a bit road-weary, but nothing a few stop-and-stretches couldn’t cure (or at least help). After that, it’s off to the mountains for a spell. Just taking it one day at a time…
Holy hades. I can’t believe it. Craig just said Uno. Is Emily taking one for the team, or has he really come from behind? The suspense is overwhelming. ... And indeed, Craig has just done the unthinkable. One hour and four deck shuffles later, Craig has just placed his last card for the ultimate Uno comeback. That’s what you call keeping your head in the game. -- J
To Mom on your 66th Birthday
(a dippy jingle...)
We'll light "66" candles in your name
and toast with carrot cake just the same
sing loud and proud your birthday song
for you're still with us Mom, all along.
Lift Mom in thought, everyone. This is her day. Please let us know how you celebrate her.
I love and miss you, Mom...with every part of me, everyday.
~E
We'll light "66" candles in your name
and toast with carrot cake just the same
sing loud and proud your birthday song
for you're still with us Mom, all along.
Lift Mom in thought, everyone. This is her day. Please let us know how you celebrate her.
I love and miss you, Mom...with every part of me, everyday.
~E
Happy Birthday, Mama
Today is Mom's 66th birthday. I say is instead of was because it will always be her day. Today also marks the one year and one day anniversary of her cancer. It seems like a lifetime ago that I got the call that she was in the emergency room and raced over from a housesitting job to be with her. If I could go back then with what I know now.... Well, life would just be different. But, it is what it is, as Craig would say. So, I plan to spend today celebrating her; her joy for life, her crude (but irresistable) sense of humor (have a feeling I got that particular gene, sorry Mrs. Jensen :)), and her love for all of us. My plan is to have the best piece of Craig's Crazy carrot cheesecake from the Cheesecake Factory (I add the crazy because what Craig isn't? ,). Wow, today must be the day for emoticons and side comments. Anyway, I hope you all do something pleasurable and indulgent for yourselves today, too. Matter of fact, do something pleasurable and indulgent for yourselves everyday! Life is just too damn short not to.
Love you Mom!
D
Love you Mom!
D
Wednesday, July 23, 2008
Jason Ricci Benefit Performance to Celebrate Craig
Save the date. Renowned blues musician and good friend, Jason Ricci, will be performing a benefit concert this Sunday (July 27) in Boulder, CO, at the Boulder Outlook Hotel (see details below), to celebrate Craig and his journey with cancer. Doors open at 7:30 p.m.;there will be a $15 cover charge.
Boulder Outlook Hotel (across from the University)
800 28thStreet
Boulder, CO
Tel: (303) 443-3322
Tennessee based Jason Ricci has not only been a friend to Craig throughout C's process, he's been an instrumental figure in honing Craig's harmonica skills. Known as one of the best harmonica talents in the nation, he's mastered the "overblow" technique, and has shared this talent with others in the harmonica community, including Craig. He's also "compiled a musical resume that most musicians don't achieve in a lifetime. Jason has won the Sonny Boy Blues Society Contest, The Mars Music National Harmonica Contest, The Muddy Waters Award and many other accolades. Ricci has been featured on television, as well as in various commercials, evening and morning news broadcasts, and on two episodes of Emeril Lagassi's show "Emeril Live." Jason has also gigged/toured or worked with Big Al and the Heavy Weights, Jimmy Lloyd Rea, Susan Tedeschi, Billy Gibson, Bobby Little, The Hounds, Nick Curran, Josh Smith, Enrico Crivellaro, Big Bad Smitty, Satan and Adam, Junior Kimbrough, Shawn Kellerman, and many more." (From www.jasonricci.com)
Craig will be there in Boulder; we hope you will, too. Please help us make this night special for Craig, and spread the word.
-- The Lawlers
Boulder Outlook Hotel (across from the University)
800 28thStreet
Boulder, CO
Tel: (303) 443-3322
Tennessee based Jason Ricci has not only been a friend to Craig throughout C's process, he's been an instrumental figure in honing Craig's harmonica skills. Known as one of the best harmonica talents in the nation, he's mastered the "overblow" technique, and has shared this talent with others in the harmonica community, including Craig. He's also "compiled a musical resume that most musicians don't achieve in a lifetime. Jason has won the Sonny Boy Blues Society Contest, The Mars Music National Harmonica Contest, The Muddy Waters Award and many other accolades. Ricci has been featured on television, as well as in various commercials, evening and morning news broadcasts, and on two episodes of Emeril Lagassi's show "Emeril Live." Jason has also gigged/toured or worked with Big Al and the Heavy Weights, Jimmy Lloyd Rea, Susan Tedeschi, Billy Gibson, Bobby Little, The Hounds, Nick Curran, Josh Smith, Enrico Crivellaro, Big Bad Smitty, Satan and Adam, Junior Kimbrough, Shawn Kellerman, and many more." (From www.jasonricci.com)
Craig will be there in Boulder; we hope you will, too. Please help us make this night special for Craig, and spread the word.
-- The Lawlers
Monday, July 21, 2008
Cancer: The Preeminent Filibusterer
There are moments in life when the plates can be felt shifting beneath the surface. For us, this seems to be such. Though we had hoped for a beautiful landscape to appear, none has emerged. Not even the delicate, selfless ritual of restoring normal affairs has presented itself. After months talking around the main thing, we’ve finally come head to head with our new contours. Adding more words to this discordant palaver doesn’t take away from the fact that Craig has terminal cancer. For six months, Craig has put all he has into fighting his cancer – nothing’s been spared. He’s faced night sweats, fatigue, incessant vomiting, even bloating, yet through it all, he hasn’t taken a knee. He’s met each day with a new determination to move forward with what he has. Still, as we now know personally, cancer’s hard to beat. Counting on a strategy of finesse and endurance that would impress even the late Strom Thurmond, cancer has proven to be the preeminent filibusterer.
We met with Dr. F this afternoon, after six days of playing high-stakes poker with C’s symptoms. It seems we’ve called the cancer’s bluff symptom-wise, and Craig is finally finding relief from almost daily bouts of vomiting, pain, and fatigue. Though his symptoms seem on the up-and-up, Craig’s cancer is still growing, which was confirmed by Dr. F. earlier today. He said that the tumors aren’t growing quite at the pre-Sorafenib speed witnessed two months ago, but fast enough to suggest Sorafenib is no longer beneficial. Unfortunately, Craig has a rare form of an already rare cancer, leaving only a handful of treatment options available. C has tried two of the three agents known to have an effect on Chromophobe cancer; Sutent is the third, and most “harmful” with regards to side-effects. Whereas Torisel and Sorafenib have a mild profile, Sutent carries with it a host of potentially damaging side-effects, including diarrhea, hand-and-foot rashes, hemorrhaging, and weakened platelets. And since the drug is metabolized through the liver, it can also cause liver damage. Despite all this, Sutent has only a 20-30% chance of slowing the growth.
Dr. F. outlined the pros and cons with Craig, and seemed to suggest that it would be unlikely for Sutent to slow the growth, and in fact, it may cause more harm than good. Knowing the risks, Craig said that he’d like to try Sutent, with the idea that if his symptoms worsen, he could discontinue the treatment. He’s decided to take a ten day break to give his body a time to heal, and to consider his next treatment. If he decides to pursue Sutent, which looks likely, he’ll start a half-dose in two weeks to give his liver time to rest; his liver functions and platelets will be monitored regularly (his levels have stabilized over the past few weeks). Dr. F. mentioned again that he would view Craig’s decision to stop treatment as perfectly reasonable, and that, although he’s not yet there with Sutent, there may come a time in the near future when Dr. F. may have to advise against treatment, especially given Craig’s liver functions. Craig’s already on the bubble to begin Sutent even at a half dose, and if his liver functions drop further, he may not be medically fit to try the drug. There is also a possibility that Sutent may in fact hasten liver damage/organ failure. With or without Sutent, Craig’s prognosis isn’t good. Depending on the tumor’s growth, we may be looking at a few long weeks. Despite the known risks and unknown benefits, it’s clear that Craig wants to try Sutent, knowing that he can discontinue at any time. I don’t disagree with this approach. Though personally I hope C doesn’t spend a lot of time chasing treatments and in doctor’s offices, I also don’t want him to feel guilty for deciding to continue treatment. I said as much during our meeting with Dr. F.
At one point, Dr. F. asked if we had discussed the pros and cons of Sutent as a family. Though we did discuss his condition quite a bit last week with the palliative care team, and even decided on a DNR, we’ve been cautious of expressing our opinions too much, when, after all, it’s Craig’s decision. We, therefore, hadn’t talked at length about Craig’s situation with regards to Sutent. Dr. F.’s question opened the door to discuss the main thing, once again. As heartbreaking as it was to discuss Craig’s end of life process not one month after Mom’s passing, discuss it we did. And, for the first time in Dr. F's office, our little pod of four (and Emily) cried. We talked it over and weighed the merits of Sutent vs. taking a break. We shared our concerns as well as our hopes, but mostly, we listened. We listened to Craig express his rationale for continuing treatment and, importantly, his hopes for spending the next few weeks or months.
Dr. F. helped facilitate the discussion and helped steer the course so that Craig felt comfortable with the options that were before him. With Dr. F still in the room, I said that this may be the time to live his life free from the burdens of chemo, tests, and appointments, especially given Sutent’s likely outcome; and that he’s put every ounce of himself into fighting this disease, and has done so with a grace and courage that would make Mom proud. I told him that we’ll continue to do whatever we can to honor his wishes, and make the remaining time beautiful for him. I told him how grateful I was of all the opportunities Craig and I have had to travel, and all the memories we’ve shared together.
Once Dr. F. left to give us space, Craig mentioned that he felt overwhelmed and that it was hard to believe that his process is now coming to a head. He spoke of the people he needed to contact, and choked up when he considered how he’d share the news with his childhood friend, Steve. For a while, the five of us sat there, silently crying. After a few moments, Craig looked up, grabbed Emily’s hand, gently smiled, and asked if she wanted to go to the mountains. Broke my heart. After spending some moments coming to terms with what we’ve known since March, we stood and gathered our things, and I gave Craig -- my best friend, travel buddy, and only brother -- a long hug. And through tears, I whispered that I loved him.
It was a quiet walk to the parking lot where Emily and I had parked. After agreeing to meet up at C’s apartment, the four of us hopped into the Subaru, and Emily into her Toyota, and pulled onto Colfax, with Emily’s car just in front. At the third stop light just before the highway, Craig, the romantic, did something I’ll never forget. With assistance from the sisters, he hopped out of our car onto Colfax and walked the ten feet to Emily’s car. I’ll never forget Emily’s smile as he tapped lightly on her window, waiting to open the door. Where’s the fake rain and “here’s looking at you kid” one-liners when you need them?
Today’s been a rough day by all accounts. We’ve been smacked around, but still find ourselves standing. Seeing him shuffle to Emily’s car made me realize that there’s still happiness amidst all this sadness. Our roots are too strong to be torn from under. -- J
To all you techies (and non-techies)
We've received great feedback from our call to spice up Craig's life through stories, videos and pictures from his friends and families. What an amazing gift you've given -- the gift of entertainment!
Please keep them coming! Craig is going through a hard time at the moment and this could really provide some level of distraction from aggravating symptoms and the debilitating truth of his disease. Take him places! Take him back in time! Take him whereever you want him to go! Or, just say hello!
If you can use your video function on a regular (digital) camera, that would be wonderful! The file sizes may be a bit large so you can either use a free "large file sending" service through the internet, such as www.sendthisfile.com (email me for more information at erinklawler@gmail.com) or simply burn it to a disc and snail mail it! (email me for an address)
It's an easy way to make a difference in his life and we're so grateful for those who have sent pictures, videos and stories thus far.
As much as Craig is going through each and every day, as much as his life has changed -- we can do something small to make him laugh or smile. Together, we can help transform "monochromatic" days into something colorful and uniquely beautiful!
Please keep up!
~E
Please keep them coming! Craig is going through a hard time at the moment and this could really provide some level of distraction from aggravating symptoms and the debilitating truth of his disease. Take him places! Take him back in time! Take him whereever you want him to go! Or, just say hello!
If you can use your video function on a regular (digital) camera, that would be wonderful! The file sizes may be a bit large so you can either use a free "large file sending" service through the internet, such as www.sendthisfile.com (email me for more information at erinklawler@gmail.com) or simply burn it to a disc and snail mail it! (email me for an address)
It's an easy way to make a difference in his life and we're so grateful for those who have sent pictures, videos and stories thus far.
As much as Craig is going through each and every day, as much as his life has changed -- we can do something small to make him laugh or smile. Together, we can help transform "monochromatic" days into something colorful and uniquely beautiful!
Please keep up!
~E
Sunday, July 20, 2008
Doctor's Appointment No. 354
Craig will have an early morning blood draw tomorrow in preparation for an afternoon visit with Dr. F. This will be the first meeting since Craig's hospital admission, subsequent discharge, and discontinuation of all things "chemo". Craig will find out what's in his cards in terms of pursuing Sutent, some other clinical trial, or saying to hell with it all, I'm going to Bermuda! (Is Bermuda even a 'hot' destination anymore???)
Tomorrow will be a big day, one filled with the familiar dreaded anticipation. We'll be prepared whichever the wind blows...
~E
Tomorrow will be a big day, one filled with the familiar dreaded anticipation. We'll be prepared whichever the wind blows...
~E
Saturday, July 19, 2008
Bucket List
We all are familiar with the question: "what would you do if you had 6 months to live?" We'd promptly fly ourselves to some deserted island, eat bountiful exotic foods til our hearts content, trek our favorite mountain range, frolic through fields of lavender, or finally find the nerve to skydive. For some, these might be real possibilities after being told "you have six months to live". For so many others, it remains a dream, a nice idea but nonetheless unrealistic.
The Bucket List concept and the question of "what would you do if you had so many months to live" is one that assumes that once one is diagnosed with a terminal illness, he/she somehow still has the energy and capacity to do the things he/she loves to do on a day-to-day basis, let alone fulfilling those lifelong dreams. It assumes one is still fit (despite having a terminal illness) to do 'those' things in 'those' 6 months. If one were to really consider the stage at which a person is in when diagnosed, one would quickly discover how difficult a question that is. Some folks have the luxury (if you can call it that in the face of cancer and terminal illness) to have the energy and mobility to travel to unseen locations, to partake in outdoor activities and the like, fulfill childhood dreams, carry on as normal at least for a spell. This is fantastic, of course, and I wouldn't suggest any other way. But, for Mom and Craig, they were incapacitated right out of the gate. The untold story for Mom and Craig and for so many others is one filled with doctors visits, regimented IV chemo appointments, physical and occupational therapy, confusion, falls, loss of leg function, incessant vomiting, fatigue, horrible pain, you name it. This is not to say that their lives haven't been fulfilling or were/are horrible, but movies like the Bucket List make it seem like one should shoot for the moon and the smaller, day-to-day goals aren't as fulfilling or enjoyable.
The truth is, debilitating symptoms have been with Craig since he was diagnosed in late February. He went into the hospital with vomiting so extreme he was delusional. This was his reality. The notion of fulfilling childhood dreams or hiking the Himalayas was all of a sudden sized down to simply getting through the day. When Mom was diagnosed, she promptly had surgery, which slowed her down considerably. The point is that so quickly the ideal of knowing what the heck one would want to do if he/she were dying -- and actually being able to do that "thing" -- is something of a fantasy. If you were to analyze a list drawn by Craig and Mom pre-cancer and then during cancer, you'd likely find two different lists. For them, it seems that spending time with family trumps big-life dreams.
With incredible courage and grit, Mom made it back to family in her last 6 months of life, traveling to Michigan just before falling ill with sepsis. Prior to her diagnosis, she traveled abroad for the first time in her life to Thailand and China. She had dreams of visiting Chris in Southern France or visiting where they filmed Lord of the Rings, but her disease moved much too quickly. The "what would you do if you had six months to live" question was re-phrased by "what will you do...today". She filled her life fully with spending time with family and doing the things she loved with the energy she had.
Craig, too. Given his symptoms, he's sought family outings and achieves goals of going on walks, or visiting the garden -- things so many take for granted. For Craig, it seems walks, etc are his island; applesauce is his exotic food that makes the belly turn with adrenaline and excitement. It's his moment to be out with the world again. Maybe it's not what he would have thought as a Bucket List pre-cancer, but today, it's just the same -- still meaningful, still worthwhile.
We spoke with the palliative care people about achieving goals for Craig before he dies. One potential dream expressed by Craig is to travel abroad again; the team said that might not be realistic given his symptoms. Traveling to Boulder might be realistic and plans are in the works to make this so. We are also bringing the oversees to him, through whatever medium possible.
We're trying to bring "life" to Craig, since he can't "go" to life as easily. We'll do whatever we can to keep his life colorful and exciting but it's limiting and he says the days feel monochromatic. This is the more debilitating side of cancer. Not to belittle his successes and everyday achievements because they are truly triumphs and moments to celebrate, but I wish he was able to do what other folks with cancer might be doing, at least for a week or some small amount of time. And, I'm not giving up hope that the symptoms will one day subside enough for him to once again enjoy the things he loves doing. To hell with big ticket dreams; I just wish that his symptoms would improve at least for a day so that he could eat, or play harmonica again.
The six month question and Bucket List is in recognition that most deny themselves a lifetime of "pleasure" for the sake of it, and in fact have a laundry list of "to do's" with the hope of actually achieving them in a certain/finite amount of time. Sure, no one can fulfill all of life's dreams and there will certainly be items left to be discovered/experienced or to be revisited, but why does it take couching how one would ideally live his/her life in terms of "if you had only so much time to live". Why does it take a hypothetical death sentence to realize you were worth it all along? At what point is it okay to fulfill lifetime dreams? Why must these dreams always come at the back end of a bad prognosis? In other words, does stockpiling dreams for the future make sense? Is purging dreams in the face of cancer fair? Do people have a choice? In the face of something catastrophic, can dreams be amended to something as fulfilling? I say yes. C and Mom have made the most of their lives pre-cancer, as well as post-cancer. For Mom, the last weeks may not have been hollywood, but they were no less important and meaningful to her. To our knowledge, she lived without regret. Family, after all, was the most important get-a-way. For C, his ending has yet to be written, but he, with the help of friends and family, will ensure his life is as rich and fulfilling as he intended it to be -- regardless of the ending. I'm sure of it.
Given how absurd the question is, I suppose the real question is "what would you do if you had a lifetime to live -- no matter how short?" (And, the real, real, real question is "at what point do you stop asking rhetorical questions and finally go to bed...as in it's midnight?")
~E
The Bucket List concept and the question of "what would you do if you had so many months to live" is one that assumes that once one is diagnosed with a terminal illness, he/she somehow still has the energy and capacity to do the things he/she loves to do on a day-to-day basis, let alone fulfilling those lifelong dreams. It assumes one is still fit (despite having a terminal illness) to do 'those' things in 'those' 6 months. If one were to really consider the stage at which a person is in when diagnosed, one would quickly discover how difficult a question that is. Some folks have the luxury (if you can call it that in the face of cancer and terminal illness) to have the energy and mobility to travel to unseen locations, to partake in outdoor activities and the like, fulfill childhood dreams, carry on as normal at least for a spell. This is fantastic, of course, and I wouldn't suggest any other way. But, for Mom and Craig, they were incapacitated right out of the gate. The untold story for Mom and Craig and for so many others is one filled with doctors visits, regimented IV chemo appointments, physical and occupational therapy, confusion, falls, loss of leg function, incessant vomiting, fatigue, horrible pain, you name it. This is not to say that their lives haven't been fulfilling or were/are horrible, but movies like the Bucket List make it seem like one should shoot for the moon and the smaller, day-to-day goals aren't as fulfilling or enjoyable.
The truth is, debilitating symptoms have been with Craig since he was diagnosed in late February. He went into the hospital with vomiting so extreme he was delusional. This was his reality. The notion of fulfilling childhood dreams or hiking the Himalayas was all of a sudden sized down to simply getting through the day. When Mom was diagnosed, she promptly had surgery, which slowed her down considerably. The point is that so quickly the ideal of knowing what the heck one would want to do if he/she were dying -- and actually being able to do that "thing" -- is something of a fantasy. If you were to analyze a list drawn by Craig and Mom pre-cancer and then during cancer, you'd likely find two different lists. For them, it seems that spending time with family trumps big-life dreams.
With incredible courage and grit, Mom made it back to family in her last 6 months of life, traveling to Michigan just before falling ill with sepsis. Prior to her diagnosis, she traveled abroad for the first time in her life to Thailand and China. She had dreams of visiting Chris in Southern France or visiting where they filmed Lord of the Rings, but her disease moved much too quickly. The "what would you do if you had six months to live" question was re-phrased by "what will you do...today". She filled her life fully with spending time with family and doing the things she loved with the energy she had.
Craig, too. Given his symptoms, he's sought family outings and achieves goals of going on walks, or visiting the garden -- things so many take for granted. For Craig, it seems walks, etc are his island; applesauce is his exotic food that makes the belly turn with adrenaline and excitement. It's his moment to be out with the world again. Maybe it's not what he would have thought as a Bucket List pre-cancer, but today, it's just the same -- still meaningful, still worthwhile.
We spoke with the palliative care people about achieving goals for Craig before he dies. One potential dream expressed by Craig is to travel abroad again; the team said that might not be realistic given his symptoms. Traveling to Boulder might be realistic and plans are in the works to make this so. We are also bringing the oversees to him, through whatever medium possible.
We're trying to bring "life" to Craig, since he can't "go" to life as easily. We'll do whatever we can to keep his life colorful and exciting but it's limiting and he says the days feel monochromatic. This is the more debilitating side of cancer. Not to belittle his successes and everyday achievements because they are truly triumphs and moments to celebrate, but I wish he was able to do what other folks with cancer might be doing, at least for a week or some small amount of time. And, I'm not giving up hope that the symptoms will one day subside enough for him to once again enjoy the things he loves doing. To hell with big ticket dreams; I just wish that his symptoms would improve at least for a day so that he could eat, or play harmonica again.
The six month question and Bucket List is in recognition that most deny themselves a lifetime of "pleasure" for the sake of it, and in fact have a laundry list of "to do's" with the hope of actually achieving them in a certain/finite amount of time. Sure, no one can fulfill all of life's dreams and there will certainly be items left to be discovered/experienced or to be revisited, but why does it take couching how one would ideally live his/her life in terms of "if you had only so much time to live". Why does it take a hypothetical death sentence to realize you were worth it all along? At what point is it okay to fulfill lifetime dreams? Why must these dreams always come at the back end of a bad prognosis? In other words, does stockpiling dreams for the future make sense? Is purging dreams in the face of cancer fair? Do people have a choice? In the face of something catastrophic, can dreams be amended to something as fulfilling? I say yes. C and Mom have made the most of their lives pre-cancer, as well as post-cancer. For Mom, the last weeks may not have been hollywood, but they were no less important and meaningful to her. To our knowledge, she lived without regret. Family, after all, was the most important get-a-way. For C, his ending has yet to be written, but he, with the help of friends and family, will ensure his life is as rich and fulfilling as he intended it to be -- regardless of the ending. I'm sure of it.
Given how absurd the question is, I suppose the real question is "what would you do if you had a lifetime to live -- no matter how short?" (And, the real, real, real question is "at what point do you stop asking rhetorical questions and finally go to bed...as in it's midnight?")
~E
Friday, July 18, 2008
Garden Party
Craig seemed to have a better day today, despite lingering fatigue that kept him napping through the better part of the afternoon. I stayed over night in one of our sisterly hospital rotations -- one night on, two nights off. It doesn't really matter where we sleep really. We wake up and head to the hospital early enough that where we rest is irrelevant. I awoke (for the last time...we technically wake up for every early morning doctor's round), showered, and stepped out into the room to find Craig awake -- a rare occurrence of late. He is usually pretty groggy in the morning, but today was different. He was up and wanted a shower. I helped him round up his garments, beckon the nurse for saran wrap to wrap his hickman site and fentanyl patches, then helped him into the bathroom -- TWO towels in hand. The site of his distended belly was alarming this morning, though I've seen it every morning thus far. It seemed more taught and shiny from the tension, and stretched from just under his chest to down to his groin. His boxers hung lower than usual as they can no longer comfortably fit over his stomach. Still, he was moving around, towing his IV stand as he entered the bathroom. Shortly after he showered, I helped him snap his gown. He tried to snap the other side and brother had that sucker backwards, oddly snapped, and contorted. It was cute. I re-snapped and watched as he found his way to bed, and laid down. His final resting position was that of his initial position -- no adjustment, just flop down and snooze. His body fell crooked and diagonal across the bed much like Mom would lay. But, instead of correcting him, I simply lifted his legs to untangle the web of IV cords he had about his legs. I took note of that moment --holding both his legs in my arms as I swept the lines down his blue patient pants and over his brown stocking feet. Such a simple move yet so tender and fulfilling. The bonding moment warmed my heart and I watched as he drifted off to sleep.
The palliative care team spoke with him just after the nap and they were impressed by his seeming increase in alertness and decrease in some of the rather debilitating symptoms. It seems we are finding equilibrium --delicate as it is --with the pain, nausea and the like. They have also started him on Ritalin to help him stay awake and have more energy throughout the day. We haven't seen this manifested in energy per se, but when he is awake, he seems much more alert, more present, and more himself. Much of this evening he spent flirting with Emily, showing her his sassy, witty self we've loved all these years. These are the moments you live for.
Two nights ago and then again tonight, we bundled Craig with blankets and took him on a wheelchair walk down to the hospital gardens -- a restorative area complete with water elements, soft lighting, rustic yet inviting seating, and plenty of foliage. Two nights ago, a cool breeze stirred the long grass and frogs serenaded from afar as we sat by the water and talked. Writer joined us that night; we talked and laughed for what seemed like an hour before Craig's pain finally chimed in. Tonight, the breeze took on wind tunnel proportions and we could only achieve one full wheelchair lap before succumbing and turning in. But still, we filled that short trek around the garden with laughter, joking at how the hospital walkways and doors are not necessarily "handicap accessible". Go figure. Craig's wheelchair narrowly scraped through the doorway. Sure they gave him a wider than normal wheelchair but this day and age hospitals should fit for bariatric populations given convincing statistics that Americans are growing larger not smaller. Regardless, walkways should at least consider the likely scenario that a temporarily or permanently wheelchair bound individual might also have in tow his or her IV stand, and said stand only has sooooo much give of IV line before it tugs, tugs, tugs the body. The sidewalks should allow for the stand to walk beside the wheelchair -- not in front or behind like we've had to do. It's a careful dance -- one plagued by close calls and plenty of "whoa, whoa, whoas". Little thought while designing (say, universal design) would be much appreciated, though I have to hand out props for including a restorative garden and access to nature.
As exciting as my soapbox is, I'll return to Craig who (once inside) ended his little outdoor adventure with more sassy comebacks that were as refreshing as the wind. It's nice to hear him want to go to the gardens. And, it's nice to see him smile, to see his eyes sparkle as he's setting up his next comment. I love my brother and am so happy to be here to capture those moments with him.
If his symptoms remain managed (relatively speaking), he'll likely be discharged tomorrow. Here's to hoping. ~E
The palliative care team spoke with him just after the nap and they were impressed by his seeming increase in alertness and decrease in some of the rather debilitating symptoms. It seems we are finding equilibrium --delicate as it is --with the pain, nausea and the like. They have also started him on Ritalin to help him stay awake and have more energy throughout the day. We haven't seen this manifested in energy per se, but when he is awake, he seems much more alert, more present, and more himself. Much of this evening he spent flirting with Emily, showing her his sassy, witty self we've loved all these years. These are the moments you live for.
Two nights ago and then again tonight, we bundled Craig with blankets and took him on a wheelchair walk down to the hospital gardens -- a restorative area complete with water elements, soft lighting, rustic yet inviting seating, and plenty of foliage. Two nights ago, a cool breeze stirred the long grass and frogs serenaded from afar as we sat by the water and talked. Writer joined us that night; we talked and laughed for what seemed like an hour before Craig's pain finally chimed in. Tonight, the breeze took on wind tunnel proportions and we could only achieve one full wheelchair lap before succumbing and turning in. But still, we filled that short trek around the garden with laughter, joking at how the hospital walkways and doors are not necessarily "handicap accessible". Go figure. Craig's wheelchair narrowly scraped through the doorway. Sure they gave him a wider than normal wheelchair but this day and age hospitals should fit for bariatric populations given convincing statistics that Americans are growing larger not smaller. Regardless, walkways should at least consider the likely scenario that a temporarily or permanently wheelchair bound individual might also have in tow his or her IV stand, and said stand only has sooooo much give of IV line before it tugs, tugs, tugs the body. The sidewalks should allow for the stand to walk beside the wheelchair -- not in front or behind like we've had to do. It's a careful dance -- one plagued by close calls and plenty of "whoa, whoa, whoas". Little thought while designing (say, universal design) would be much appreciated, though I have to hand out props for including a restorative garden and access to nature.
As exciting as my soapbox is, I'll return to Craig who (once inside) ended his little outdoor adventure with more sassy comebacks that were as refreshing as the wind. It's nice to hear him want to go to the gardens. And, it's nice to see him smile, to see his eyes sparkle as he's setting up his next comment. I love my brother and am so happy to be here to capture those moments with him.
If his symptoms remain managed (relatively speaking), he'll likely be discharged tomorrow. Here's to hoping. ~E
Thursday, July 17, 2008
Storyline
I'm sitting next to a sleeping Craig. The lights are dim and the only sound is that of the wind current from his 69 degree air conditioner, the bed mattress redistributing air, and the occasional whimper from either a colorful dream or his ever loyal companion, pain. Still, he's clutching the sheets much like Mom would when she slept, and I can't help but smile.
The days since Craig's admittance to the 11th floor have been hectic and amorphous. Days seem to blur into one another without much definition.
He was admitted Sunday evening and just as soon as he sat on the bed, he vomited. His color has reached a new tone of yellow/green; his cheeks appear a bit more hollow; his legs and arms have grown thinner and bones are much more apparent. Yet, his belly distends in all directions including his lower back. To anyone else, I'm sure Craig appears ghastly ill. I find it still takes a bit of suspended disbelief to really accept the storyline. I see Craig; I see his symptoms and how sick he is; I know the probable outcome and the odds of anything really deterring the train from its tracks. Yet, it's difficult to see and accept that Craig is wandering down a path similar to Mom's only three weeks after her passing. It seems cruel and unholy how Craig has to face his own mortality so close to Mom's death when images are still fresh and process "milestones" are keenly remembered. Still, here we are...
Tuesday, the team of oncology residents, attending physician, palliative care team, internal medicine resident for oncology, charge nurse, and Craig's nurse joined us around Craig's patient bed for a family meeting. In all, I think there were 9 folks staring at Craig, wanting to help him in any way they could. I started things off with asking for the results of the various CT scans and ultrasounds that were taken Monday. As we expected, the images showed that his tumor bulk had increased - Craig's cancer was on the move again. This may have come as some surprise to Craig. Thus far, he was under the assumption that his cancer was contained and, if anything, on the run. To learn that the cancer was in fact growing was disappointing, to put it kindly. The doctor went on to say that there's fluid in or around his lungs; swollen lymph nodes indicating disease in his lymph system; lesions surrounding his liver (it's unclear whether there is disease within the liver); and general growth throughout. Essentially, it is more of the same on a larger scale. The cancer is disturbing some of the body's natural ways of storing and removing fluid and so there is some pooling of fluid in his lower back and abdomen, which might be adding to his distension. This is also likely responsible for his shortness of breath. I helped him sit upright and could hear him wheezing with exertion. The harmonica blowing, avid swimmer was out of breath from sitting up. It broke my heart. Yet, we learned today that the fluid in his belly is not significant enough to warrant a tap to drain any excess, leaving the likely culprit for his belly distension to be a combination of increased tumor bulk, fluid, and gas.
Craig's liver continues to function at a subpar rate indicating some level of irritation. His chemo agent was halved to relieve some of the burden on the liver, and we held our collective breath knowing just what his cancer is capable of when left (even moderately) unrestricted. Whether the cancer began moving again even before halving his dose or whether that was the leg up it needed to take off, we will never know. What we do know is that his liver could not keep up and the chemo needed to be lowered. It was the proverbial Catch 22 we are now accustomed to seeing. It brings back painful memories/realizations of when our Mom had hemorrhaging in the brain and a probable pulmonary embolism. The doctors could not treat one without exacerbating the other; anticoagulants generally used to treat blood clots in the lungs would increase the bleeding in the brain. There is a similar dilemma with Craig; maintaining a high dose of his chemo agent would continue to compromise his liver, and his cancer may no longer be responding to his chemo in the first place.
The notion that the chemo was no longer working was, in fact, the conclusion of the oncology and palliative care team. They suggested that Craig take a break, perhaps two weeks, to let his liver rebound from the insult - IF it will rebound. The liver deficiency could be related to the disease. After two weeks, they suggest placing him on the 3rd string quarterback "chemo-like" agent, Sutent. This has been used almost exclusively, and quite effectively, in treating Clear Cell Renal Cell Carcinoma. The Torisel and Nexavar, which Craig has used and has blown through, had some influence on his Chromophobe type of cancer. There aren't many treatments for Chromophobe and Craig has unfortunately tried the two heavy hitters without much success. There is a chance Sutent could help, however. As the attending doctor noted, some people who have had success on Sutent may live an additional couple of months. Bottom line, there are no false perceptions of what Sutent could do. There is a chance his cancer would respond in a way that might slow the growth or, with any luck, stop growth. The hope is that it will quell some of the symptoms for Craig to enjoy life for however long he will live. It is difficult to establish a true understanding of what we are looking at but, from the discussions, it would appear that we are talking a few short months, perhaps even weeks depending on how he responds in the off period of treatment and then while back on treatment.
We know what his cancer can do and two weeks is a long time. I would not be surprised if the recommendation from his oncologist (who is on vacation this week) is to postpone treatment and focus on symptom management to enable Craig to do the things he loves while he can. We'll know more when he returns later this weekend.
We also learned over these few days that Craig is borderline anemic again. Evidently, as cancer overwhelms the body, the body is less able to make new blood, necessitating more frequent blood transfusions. He received another transfusion last night. However, he had a violent reaction and began shaking after only 3/4s of one bag being infused, and they had to discontinue the process. Reactions of this nature become more common as one receives more transfusions, so they will pre-medicate him in the future prior to transfusion as a preventive measure.
The palliative care team is speaking with Craig to help understand his symptoms in order to give him better relief, as well as help walk him through the emotional/psychological journey he is now on (and has been on since late February). He's in nearly constant pain, has a difficult time finding a comfortable position, and often groans, whimpers and winces throughout the day. At night and sometimes during the day, he breaks into hot flashes and sweats profusely. The cause of the sweats is still a mystery to the palliative care team, and to all of us. His blood pressure typically spikes during each episode, yet, lately, it's remaining elevated despite the flashes and consistent blood pressure regulating medications. He is also vomiting (nothing new) but this adds to the discomfort. The team has increased his pain medications, including his fentanyl patch and prescribing oxycodone as needed, which is becoming more frequent. The number one goal in this two week interim and beyond is symptom management; I hope that medicine can catch up to him in that regard because it's gut wrenching to witness and be absolutely helpless over.
As Craig has been presented with the news, we've asked him how he's doing and what he is feeling/thinking. He's clearly shocked. I asked him if the news fell in line with his expectations or understanding with what was happening and how he felt. He said he did feel different this weekend, and that difference was worse than before. But, still, he did not expect to hear this news and did not necessarily know he is at the point that he is. Over choked tears, he mentioned to the palliative care team that he felt a change and that he had turned a corner and was concerned that he was traveling down the road our mom was on - a road marked by hospital visits and sheer immobility as she was nearing her death. We all shared his tears and pain, though I'm sure his hits a far deeper level. He is exceptionally brave and courageous to have brought up the comparison and fear - something we've worried about even before Mom's passing. We wondered what he internalized during the end of her cancer process, if that was a mirror to his own, if he wondered what would happen to him. Now, given the proximity, we wonder if he panics when symptoms appear like being short of breath, and try to reassure him that it is not like Mom and that he's not at that point yet.
At times, it's just too much to take. I remember walking into the room one night. I'm not sure if it was the lighting, the green tinge of his patient gown, his true color, or a combination of all three but he had the eerie coloring similar to Mom's. The image and memory froze my gait, and I just stood and stared wondering how this could be happening. He's not where Mom was but, in time, we'll be making decisions on Craig's behalf, advocating for his best interests when he can't, and buzzing his hair as he passes. It is screwed up on so many levels, but I'm glad he has his girlfriend, Emily, and his friends there for him willing to walk through fire it did any good. And, he has his devoted sisters, who will always be by his side as we have in the past - that impenetrable pod of four. Dad will join, too. Like with Mom, at least he doesn't have to worry whether he'll be alone. ~E
The days since Craig's admittance to the 11th floor have been hectic and amorphous. Days seem to blur into one another without much definition.
He was admitted Sunday evening and just as soon as he sat on the bed, he vomited. His color has reached a new tone of yellow/green; his cheeks appear a bit more hollow; his legs and arms have grown thinner and bones are much more apparent. Yet, his belly distends in all directions including his lower back. To anyone else, I'm sure Craig appears ghastly ill. I find it still takes a bit of suspended disbelief to really accept the storyline. I see Craig; I see his symptoms and how sick he is; I know the probable outcome and the odds of anything really deterring the train from its tracks. Yet, it's difficult to see and accept that Craig is wandering down a path similar to Mom's only three weeks after her passing. It seems cruel and unholy how Craig has to face his own mortality so close to Mom's death when images are still fresh and process "milestones" are keenly remembered. Still, here we are...
Tuesday, the team of oncology residents, attending physician, palliative care team, internal medicine resident for oncology, charge nurse, and Craig's nurse joined us around Craig's patient bed for a family meeting. In all, I think there were 9 folks staring at Craig, wanting to help him in any way they could. I started things off with asking for the results of the various CT scans and ultrasounds that were taken Monday. As we expected, the images showed that his tumor bulk had increased - Craig's cancer was on the move again. This may have come as some surprise to Craig. Thus far, he was under the assumption that his cancer was contained and, if anything, on the run. To learn that the cancer was in fact growing was disappointing, to put it kindly. The doctor went on to say that there's fluid in or around his lungs; swollen lymph nodes indicating disease in his lymph system; lesions surrounding his liver (it's unclear whether there is disease within the liver); and general growth throughout. Essentially, it is more of the same on a larger scale. The cancer is disturbing some of the body's natural ways of storing and removing fluid and so there is some pooling of fluid in his lower back and abdomen, which might be adding to his distension. This is also likely responsible for his shortness of breath. I helped him sit upright and could hear him wheezing with exertion. The harmonica blowing, avid swimmer was out of breath from sitting up. It broke my heart. Yet, we learned today that the fluid in his belly is not significant enough to warrant a tap to drain any excess, leaving the likely culprit for his belly distension to be a combination of increased tumor bulk, fluid, and gas.
Craig's liver continues to function at a subpar rate indicating some level of irritation. His chemo agent was halved to relieve some of the burden on the liver, and we held our collective breath knowing just what his cancer is capable of when left (even moderately) unrestricted. Whether the cancer began moving again even before halving his dose or whether that was the leg up it needed to take off, we will never know. What we do know is that his liver could not keep up and the chemo needed to be lowered. It was the proverbial Catch 22 we are now accustomed to seeing. It brings back painful memories/realizations of when our Mom had hemorrhaging in the brain and a probable pulmonary embolism. The doctors could not treat one without exacerbating the other; anticoagulants generally used to treat blood clots in the lungs would increase the bleeding in the brain. There is a similar dilemma with Craig; maintaining a high dose of his chemo agent would continue to compromise his liver, and his cancer may no longer be responding to his chemo in the first place.
The notion that the chemo was no longer working was, in fact, the conclusion of the oncology and palliative care team. They suggested that Craig take a break, perhaps two weeks, to let his liver rebound from the insult - IF it will rebound. The liver deficiency could be related to the disease. After two weeks, they suggest placing him on the 3rd string quarterback "chemo-like" agent, Sutent. This has been used almost exclusively, and quite effectively, in treating Clear Cell Renal Cell Carcinoma. The Torisel and Nexavar, which Craig has used and has blown through, had some influence on his Chromophobe type of cancer. There aren't many treatments for Chromophobe and Craig has unfortunately tried the two heavy hitters without much success. There is a chance Sutent could help, however. As the attending doctor noted, some people who have had success on Sutent may live an additional couple of months. Bottom line, there are no false perceptions of what Sutent could do. There is a chance his cancer would respond in a way that might slow the growth or, with any luck, stop growth. The hope is that it will quell some of the symptoms for Craig to enjoy life for however long he will live. It is difficult to establish a true understanding of what we are looking at but, from the discussions, it would appear that we are talking a few short months, perhaps even weeks depending on how he responds in the off period of treatment and then while back on treatment.
We know what his cancer can do and two weeks is a long time. I would not be surprised if the recommendation from his oncologist (who is on vacation this week) is to postpone treatment and focus on symptom management to enable Craig to do the things he loves while he can. We'll know more when he returns later this weekend.
We also learned over these few days that Craig is borderline anemic again. Evidently, as cancer overwhelms the body, the body is less able to make new blood, necessitating more frequent blood transfusions. He received another transfusion last night. However, he had a violent reaction and began shaking after only 3/4s of one bag being infused, and they had to discontinue the process. Reactions of this nature become more common as one receives more transfusions, so they will pre-medicate him in the future prior to transfusion as a preventive measure.
The palliative care team is speaking with Craig to help understand his symptoms in order to give him better relief, as well as help walk him through the emotional/psychological journey he is now on (and has been on since late February). He's in nearly constant pain, has a difficult time finding a comfortable position, and often groans, whimpers and winces throughout the day. At night and sometimes during the day, he breaks into hot flashes and sweats profusely. The cause of the sweats is still a mystery to the palliative care team, and to all of us. His blood pressure typically spikes during each episode, yet, lately, it's remaining elevated despite the flashes and consistent blood pressure regulating medications. He is also vomiting (nothing new) but this adds to the discomfort. The team has increased his pain medications, including his fentanyl patch and prescribing oxycodone as needed, which is becoming more frequent. The number one goal in this two week interim and beyond is symptom management; I hope that medicine can catch up to him in that regard because it's gut wrenching to witness and be absolutely helpless over.
As Craig has been presented with the news, we've asked him how he's doing and what he is feeling/thinking. He's clearly shocked. I asked him if the news fell in line with his expectations or understanding with what was happening and how he felt. He said he did feel different this weekend, and that difference was worse than before. But, still, he did not expect to hear this news and did not necessarily know he is at the point that he is. Over choked tears, he mentioned to the palliative care team that he felt a change and that he had turned a corner and was concerned that he was traveling down the road our mom was on - a road marked by hospital visits and sheer immobility as she was nearing her death. We all shared his tears and pain, though I'm sure his hits a far deeper level. He is exceptionally brave and courageous to have brought up the comparison and fear - something we've worried about even before Mom's passing. We wondered what he internalized during the end of her cancer process, if that was a mirror to his own, if he wondered what would happen to him. Now, given the proximity, we wonder if he panics when symptoms appear like being short of breath, and try to reassure him that it is not like Mom and that he's not at that point yet.
At times, it's just too much to take. I remember walking into the room one night. I'm not sure if it was the lighting, the green tinge of his patient gown, his true color, or a combination of all three but he had the eerie coloring similar to Mom's. The image and memory froze my gait, and I just stood and stared wondering how this could be happening. He's not where Mom was but, in time, we'll be making decisions on Craig's behalf, advocating for his best interests when he can't, and buzzing his hair as he passes. It is screwed up on so many levels, but I'm glad he has his girlfriend, Emily, and his friends there for him willing to walk through fire it did any good. And, he has his devoted sisters, who will always be by his side as we have in the past - that impenetrable pod of four. Dad will join, too. Like with Mom, at least he doesn't have to worry whether he'll be alone. ~E
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