It doesn’t seem quite real, Art is still very weak. In my mind, when we finally got the good news, I expected Art to stand up, arms raised, face lifted to the ceiling and shout “Praise the Lord, I am healed!” then turn on his heals and jog out like the man he was in July 2006. Instead, we moved through today in a daze, staring at each other often, listening to the cries of “Wonderful!” and “Fantastic!” from our friends as if we were bystanders. We are trying hard to figure out a way to make this feel real. I'm assuming it will replace the worry little by little.
Tuesday, February 27, 2007
Moving Forward?
Saw Dr.Wolin today. He confirmed, in person, what he said last night. As far as he can see, the cancer is gone. No noise makers were present. But he did smile and was again cautiously optimistic. Optimism is a good thing, even in small doses.
It doesn’t seem quite real, Art is still very weak. In my mind, when we finally got the good news, I expected Art to stand up, arms raised, face lifted to the ceiling and shout “Praise the Lord, I am healed!” then turn on his heals and jog out like the man he was in July 2006. Instead, we moved through today in a daze, staring at each other often, listening to the cries of “Wonderful!” and “Fantastic!” from our friends as if we were bystanders. We are trying hard to figure out a way to make this feel real. I'm assuming it will replace the worry little by little.
It doesn’t seem quite real, Art is still very weak. In my mind, when we finally got the good news, I expected Art to stand up, arms raised, face lifted to the ceiling and shout “Praise the Lord, I am healed!” then turn on his heals and jog out like the man he was in July 2006. Instead, we moved through today in a daze, staring at each other often, listening to the cries of “Wonderful!” and “Fantastic!” from our friends as if we were bystanders. We are trying hard to figure out a way to make this feel real. I'm assuming it will replace the worry little by little.
Monday, February 26, 2007
Amen to That
In the world of medicine (a.k.a. life) nothing is definitive.
Spoke with Dr. Wolin just minutes ago, after I spoke with Art who sounded unsteady and scared. We cannot tell if the cancer is completely gone. BUT (and this is as big as mine is right now) we do know that his PET/CATScan looks much better (clearer) than it did on December 15th when the doctor declared there is little or no cancer activity. The scans taken today are hard to read because of the stupid pneumonia, can’t see under or through that stuff, ya know. Last months set back has left Art feeling unsure. (Me too, but I'm not talking about it.)
He’s nervous. He wanted to see Dr. Wolin walk in with a party hat on his head and confetti sprouting from his fingers. Instead he got a guy who wasn’t quite sure if he should kiss her on the first date.
There comes a time when you have to just say “Fuck it!” Dr. Wolin is cautiously optimistic. That works for me! Ahem….let me clear my throat. So, fuck it! I, Kim Hamer, am declaring Art Nagle cancer free. From this day forth, my charmed, beloved, gifted, talented and inspiring husband is now cancer free….and will continue to be for the rest of his life. This beast no longer has a hold on him.
FREEEEEEEEE!!!!!!!! Cuase if this cancer ain't gone, it's gonna get hurt. I'm gonna will it out of his body. I'll take my ancestors strength, the ones that came over on a boat, ripped from their land, chained down below deck, isolated, and terrified, ya know, those people? I will take their courage, their will and use all of it to force this motherfucker out of his body. I am done, finished, tired, fed up, and pissed off. PISSED OFF!! I want Art back. I am having my life back. It is time to rebuild, just like the $6 Million Dollar Man. This new life will commence NOW. Cancer you ain’t got nothin’ on my man or on me! (black woman head wag goin’ on) And that is definitive! Damn the pneumonia! I am declaring that we have won. And the universe says 'yes.' And so it is. Amen.
Break out the bottles of champagne, folks and come on by for a visit. We are on the mend.
Spoke with Dr. Wolin just minutes ago, after I spoke with Art who sounded unsteady and scared. We cannot tell if the cancer is completely gone. BUT (and this is as big as mine is right now) we do know that his PET/CATScan looks much better (clearer) than it did on December 15th when the doctor declared there is little or no cancer activity. The scans taken today are hard to read because of the stupid pneumonia, can’t see under or through that stuff, ya know. Last months set back has left Art feeling unsure. (Me too, but I'm not talking about it.)
He’s nervous. He wanted to see Dr. Wolin walk in with a party hat on his head and confetti sprouting from his fingers. Instead he got a guy who wasn’t quite sure if he should kiss her on the first date.
There comes a time when you have to just say “Fuck it!” Dr. Wolin is cautiously optimistic. That works for me! Ahem….let me clear my throat. So, fuck it! I, Kim Hamer, am declaring Art Nagle cancer free. From this day forth, my charmed, beloved, gifted, talented and inspiring husband is now cancer free….and will continue to be for the rest of his life. This beast no longer has a hold on him.
FREEEEEEEEE!!!!!!!! Cuase if this cancer ain't gone, it's gonna get hurt. I'm gonna will it out of his body. I'll take my ancestors strength, the ones that came over on a boat, ripped from their land, chained down below deck, isolated, and terrified, ya know, those people? I will take their courage, their will and use all of it to force this motherfucker out of his body. I am done, finished, tired, fed up, and pissed off. PISSED OFF!! I want Art back. I am having my life back. It is time to rebuild, just like the $6 Million Dollar Man. This new life will commence NOW. Cancer you ain’t got nothin’ on my man or on me! (black woman head wag goin’ on) And that is definitive! Damn the pneumonia! I am declaring that we have won. And the universe says 'yes.' And so it is. Amen.
Break out the bottles of champagne, folks and come on by for a visit. We are on the mend.
Friday, February 23, 2007
LIVE NOW
The novelty of being home is being replaced with the responsibility of Art's care. I care for four people instead of just three. Art sleeps most of the time now, gets up to eat at breakfast and dinner only. We still go to the cancer center every day to have his blood drawn. He gets a bit stronger every 24 hour period, but it's in such small increments it's hard to see progress. (I just reread that paragraph. Listen to me! Good grief, we'ver only been home for 3 24 hour periods! No matter, I want progress, damn it!! How human of me. No matter where we are in this disease, it feel like we've been here foooorrrreeeeevvvvvveeeeeerrrrrr.)
Art will be tested on Monday. The tests will reveal whether or not the cancer has gone. The thought of going through this again is like a tsunami, too overwhelming to comprehend. Art and I wedge ourselves around this pink elephant instead.
Which leads me to repeat Art's new slogan. LIVE NOW (capitals only). I like it. It's like being dope slapped back into true reality (several levels above the human experience). Instead of dwelling in the "what if's," I will LIVE NOW and...head to bed.
Thank you everyone for your support. Loving us is, honestly, the most powerful healing there is.
Art will be tested on Monday. The tests will reveal whether or not the cancer has gone. The thought of going through this again is like a tsunami, too overwhelming to comprehend. Art and I wedge ourselves around this pink elephant instead.
Which leads me to repeat Art's new slogan. LIVE NOW (capitals only). I like it. It's like being dope slapped back into true reality (several levels above the human experience). Instead of dwelling in the "what if's," I will LIVE NOW and...head to bed.
Thank you everyone for your support. Loving us is, honestly, the most powerful healing there is.
Tuesday, February 20, 2007
Home At Last
Home at last.
Home at last.
Thank God Almighty, we're home at last.
We arrived home today. Don't know if the cancer is gone yet. For now, don't care. We are home, with our kids, and soon in our own bed. We are looking forward to listening to the innane arguments and seeing friends. We are looking forward to our life.
Home at last.
Thank God Almighty, we're home at last.
We arrived home today. Don't know if the cancer is gone yet. For now, don't care. We are home, with our kids, and soon in our own bed. We are looking forward to listening to the innane arguments and seeing friends. We are looking forward to our life.
Sunday, February 18, 2007
Up
1000! He’s up to 1000 glorious, beautiful, strong, willful white blood cells! From .2 yesterday to 1.0 today. Today 1.0, tomorrow the world! The goal is 4.0. Will they see fit to double, triple by tomorrow? Who knows? Who cares? Up means we do not go down. As the numbers go up, we think about going back to our home and to our kids. Up means the lives we return to are deeper with friendships that this disease brought together and strengthened and lighter from the ones we lost. Up means I get him back. I am humbled by his courage to fight so hard. Up is where we begin again. Thank God for up. Thank fucking God for up.
Today is Art's 42nd Birthday. We got the gift of hope.....oh how corny! Oh how true.
Today is Art's 42nd Birthday. We got the gift of hope.....oh how corny! Oh how true.
Thursday, February 15, 2007
A Quiz
What do you do when all three of your kids are sick with consistent temperatures hovering around 101, and your mother, the person who is taking care of your kids, calls you and staes “I’m getting sick. We'll need help.” (and where do you put the quesiton mark, inside the quote or outside the quote?
Do you:
a. ask for someone to come over, expose themselves to the ‘house of ills’?
b. sacrifice yourself (that’s what mothers are supposed to do right!) and go back home to immerse yourself in the ‘germ pit’ understanding that you will be unable to support your husband through the hardest part of this journey until his white count goes up? (Anywhere between the next 4 – 15 days)
c. do your best impression of Gumby (damn it) and hope your plastic being will stretch just a bit further...again?
d. throw your hands up, get in the car and drive till you run out of gas and make a new life here ever that place may be?
e. admit yourself into mental hospital (hopefully, it’s germ free) knowing when the kids are older they can sell their story and have it made into a Hallmark movie?
f. take all the anger at the cancer, at the kids, at your mother, at your husband and mostly at yourself for not being able to handle a situation that is clearly unmanageable (when looked at objectively, of course) and use the energy to find a way to instantly clone yourself?
If you picked b or c, you are what is known as a “over giver” and need to learn to set boundaries.
If you picked d, you are a coward and will never be able to make close connections with people and live a life with limited emotional pain. Wow, right now that sounds good.
If you picked f, let me know what you learn ASAP.
If you picked e, does it have a nice lawn with a big oak tree to sit under? Private rooms? A cute doctor?
If you picked a, call me.
Humor is the only thing I have left. When I’m not laughing, I’m crying. There is no middle anymore, no sanity. I didn’t know it, but it left a few weeks ago.
P.S. Art is the same. No better, no worse. He's consistent even in illness.
Do you:
a. ask for someone to come over, expose themselves to the ‘house of ills’?
b. sacrifice yourself (that’s what mothers are supposed to do right!) and go back home to immerse yourself in the ‘germ pit’ understanding that you will be unable to support your husband through the hardest part of this journey until his white count goes up? (Anywhere between the next 4 – 15 days)
c. do your best impression of Gumby (damn it) and hope your plastic being will stretch just a bit further...again?
d. throw your hands up, get in the car and drive till you run out of gas and make a new life here ever that place may be?
e. admit yourself into mental hospital (hopefully, it’s germ free) knowing when the kids are older they can sell their story and have it made into a Hallmark movie?
f. take all the anger at the cancer, at the kids, at your mother, at your husband and mostly at yourself for not being able to handle a situation that is clearly unmanageable (when looked at objectively, of course) and use the energy to find a way to instantly clone yourself?
If you picked b or c, you are what is known as a “over giver” and need to learn to set boundaries.
If you picked d, you are a coward and will never be able to make close connections with people and live a life with limited emotional pain. Wow, right now that sounds good.
If you picked f, let me know what you learn ASAP.
If you picked e, does it have a nice lawn with a big oak tree to sit under? Private rooms? A cute doctor?
If you picked a, call me.
Humor is the only thing I have left. When I’m not laughing, I’m crying. There is no middle anymore, no sanity. I didn’t know it, but it left a few weeks ago.
P.S. Art is the same. No better, no worse. He's consistent even in illness.
Wednesday, February 14, 2007
Giving Birth vs. Stem Cells After Effects
Giving Birth
- Friends and midwives and doctors tell you that it will be difficult.
- They tell you labor varies from individual to individual.
- Your wife turns inward. Distracting her while she is concentrating on her “job” could result in: at minimum your hurt feelings because she snaps at you, at maximum you leaving the room in embarrassment after being harangued in front of the nurses.
- She shows little resemblance to the woman you married.
- It’s over between 12 and 24 hours, on average
- You are terrified. The changes come suddenly and without warning, you don’t know what to expect. Uncertainty is short lived (not counting life with a newborn).
Stem Cell After Effects
- The doctors tell you it will be difficult.
- They tell you each individual reacts differently.
- Walking 100 yds becomes the “longest mile.” Trying to distract him, leads to: at minimum being ignored, at maximum him stopping, asking “What?” Answering your question, then mustering up the energy to walk again adding at least 3 minutes to the trip.
- He shows very little resemblance to the man you married.
- It’s over between 12 and 24 days, on average.
- You are terrified. The changes come suddenly and without warning, you don’t know what to expect. Uncertainty becomes the norm.
Monday night we learned he had pneumonia. After being admitted to the hospital, he spiked a fever. He has no white cells to fight off that fever. The nurses kept saying “We need to stabilize him.” Not a confident building statement. He was given oxygen (which sent me reeling back to our first hospital administration) and antibiotics. A nurse stayed outside the room, checking frequently on him until 4:00 am when his fever came down.
On Tuesday, he didn’t leave the bed. He managed to hold small amounts of Jell-O and sherbet down. He vomited only twice, an improvement over Mondays’ record of 6 times. I learn that this is all normal – the fatigue, the fevers. Dr. Wolin did admit the administration of oxygen is not usual, though. Art’s inability to walk anywhere, our needing to get him a walker, his unsteadiness, inability to stay awake for more than 15 minutes, his loss of appetite, even the vomiting is within the range of reactions. However, just like giving birth for the first time, normal range is fine and dandy when you hear about it, but when it’s you or someone you love, watching your loved one loose his ability so quickly to function is the most frightening experience I have ever had. I take that back, this experience has only one equal -- the day we watched Pallas get hit by a car.
Art is doing better now. He’s alert, and his sense of humor has returned. He actually got up to use the bathroom this morning. Yipee! Thank God for antibiotics, platelets, and blood.
P.S. Don't forget Art's Birthday is Sunday!
Tuesday, February 13, 2007
Art update
For the moment Art is stabilized in the hospital. Fever is gone. They put an extension on his bed so he can finally stretch out. I am going for a pre-emptive stress massage and pedicure.
Monday, February 12, 2007
Note to My Sister-In-Law
I just sent this to my sister-in-law. Don't know why I am posting it here, guess I'm hoping that by writing it out and posting, it will release the fear. God I hope this works.
"Art is being admitted tonight. He has pnemonia (or however you spell it) Better days need to be ahead. They better be cause I don't know how many more scary days of this I can take. Barbara, I have NEVER seen him so sick, never and i am terrified."
"Art is being admitted tonight. He has pnemonia (or however you spell it) Better days need to be ahead. They better be cause I don't know how many more scary days of this I can take. Barbara, I have NEVER seen him so sick, never and i am terrified."
A Birthday Gift For Art
On Sunday, February 18th, Art will celebrate his 42nd birthday. Eight hours of it will be spent here at the cancer center. As of today, he is hitting bottom. The side effects are increasing in numbers, adding mouth sores and loss of appetite to the list today. Unless there is a miracle, his symptoms will accumulate and worsen by the time it’s his birthday.
So, I have a plan. Art is a music lover. It soothes his soul (sorry for the cliché) and makes the days pass more quickly for him.
For his birthday, I ask that you send me a song.
1. Send either the title and lyrics of a song, or a music file (iPod preferable) or a CD of song(s).
2. The song should remind you of Art in some way or another.
3. Please include a note explaining why the song makes you think of him. Don’t forget to include your name, and the title of the song on the note and CD if you send one. It would be really helpful if you typed out the notes and sent them, even if your song is sent to me via email. I have limited access to a printer!
4. Don’t worry about genre as his tastes are pretty wide ranging from ragtime, to blues, to rock, to gospel, acapella, classical and yes even rap. Lately he’s been listening to Tom Waite.
5. The idea is to lift his spirits, give him something new to listen and to remind him, again, how much he is loved.
Please mail cds and notes to our apartment at 1420 Ambassador Way, Apt. # 2-204, Los Angeles, CA 90035. You can email music files to hamernagle@hotmail.com, please put Art’s Birthday in the subject line.
I know these gifts will do much to lift his spirits. Oh and it may seem random but please, DO NOT SEND FLOWERS! With a compromised immune system, flowers are part of the ever increasing list of “bad things that get Art hospitalized.”
Your gift will help him soar above these indecencies of this stupid disease.
So, I have a plan. Art is a music lover. It soothes his soul (sorry for the cliché) and makes the days pass more quickly for him.
For his birthday, I ask that you send me a song.
1. Send either the title and lyrics of a song, or a music file (iPod preferable) or a CD of song(s).
2. The song should remind you of Art in some way or another.
3. Please include a note explaining why the song makes you think of him. Don’t forget to include your name, and the title of the song on the note and CD if you send one. It would be really helpful if you typed out the notes and sent them, even if your song is sent to me via email. I have limited access to a printer!
4. Don’t worry about genre as his tastes are pretty wide ranging from ragtime, to blues, to rock, to gospel, acapella, classical and yes even rap. Lately he’s been listening to Tom Waite.
5. The idea is to lift his spirits, give him something new to listen and to remind him, again, how much he is loved.
Please mail cds and notes to our apartment at 1420 Ambassador Way, Apt. # 2-204, Los Angeles, CA 90035. You can email music files to hamernagle@hotmail.com, please put Art’s Birthday in the subject line.
I know these gifts will do much to lift his spirits. Oh and it may seem random but please, DO NOT SEND FLOWERS! With a compromised immune system, flowers are part of the ever increasing list of “bad things that get Art hospitalized.”
Your gift will help him soar above these indecencies of this stupid disease.
Experienced Platelet Donors Needed
Art will be in need of platelets starting tomorrow and most likely on again and off again for the next few weeks at least. Giving platelets is more intense than giving blood, requiring close to two hours of being in a chair. Because of this, we are looking for donors who have given platelets before. Your blood type is NOT important.
If you have given before or you think you can hang out in a chair for two hours continuously squeezing a little ball, please call Karen Sacks at 310-202-6151.
And THANK YOU to all the O+ (-) people who donated. We used the first batch of blood two days ago and will use more probably on Wednesday. What a cool thought it is for me to think about the blood of people who love him, giving him life. I know, corny but it's true, your life will at some point be surging through his veins. Thank you is clearly not enough.
If you have given before or you think you can hang out in a chair for two hours continuously squeezing a little ball, please call Karen Sacks at 310-202-6151.
And THANK YOU to all the O+ (-) people who donated. We used the first batch of blood two days ago and will use more probably on Wednesday. What a cool thought it is for me to think about the blood of people who love him, giving him life. I know, corny but it's true, your life will at some point be surging through his veins. Thank you is clearly not enough.
Sunday, February 11, 2007
Day 3
Day 3
His counts are almost at 0, 156 to be exact. (Normal is 1800 – 8000) They will be 0 tomorrow when they take his blood. O, nada, none. No white blood cells. Nothing to fend off virus’, fungus’, or bacterias. All milk products are officially band (unless they are cooked). The only fruit available are oranges and bananas because of their thick skin. No salads, restaurant food. No fresh vegetables. The simple act of not washing my hands before I hand him something can make him sick. Someone had a child in the center on Friday, a coughing child. I wanted to pick up that germ bag and remove it, then walk in and scold the parents –people who were beyond realizing that this was a “cancer treatment center” and there are people here who “are sick.” I didn’t know I would so fierecly want to do bodily harm anyone who sneezed or coughed within a 5 mile radious of Art.
Art walked down to the cancer treatment center today. For the past three days, he has been too fatigued to make the walk, using a wheelchair instead. He still walks at the approximate speed of an 18 month old toddler, although with more focus and no stopping. Stopping means not going again. At home, he hasn’t sat at the dinner table for the same number as days. I have to remind him to take his medicines. I help him undress every night. It's like living, I assume, with an elderly patient who needs assistance in almost everything he/she does. Only, this is not an elderly man, this is my 42 year old husband.
If I had a sledge hammer, I am sure I could break through four concrete walls with one blow. As I picked up the hammer, all the frustration, stress and anger from Art, the kdis and me would be drawn into the wooden handle. My own will would swing the hammer high and strong over my right shoulder. Gravity and my anticipation of release would power the momentum of the hammer down. It would trigger the flow of emotion from the handle to the metal mallet. The force would ravage four walls. After being hit, the walls would crumble in defeat and the emotions of this journey would dissipate with the dust. I would walk away feeling my "wrecking ball" power.
A Side Note. I have had no formal training as a writer, heck I graduated college with a degree in speech pathology. I have always used Art as my editor. He was able to read my work with a “professional” eye, asking questions and make suggestions that would take whatever I wrote to the next level. That last paragraph, “if I had a sledge hammer” is also a victim of this disease. The idea is present, but something is missing from it (you writers totally know what I’m talking about). It needs work and I am incapable of figuring out what to do. There have been moments when I have "channeled" Art, making the changes I know he would suggest. At present my own fatigue has made me incapable of that and Art is under the chemo haze, uanble to focus long enough to help me. The rage I feel at this moment could probably knock down this whole building. I miss him.
His counts are almost at 0, 156 to be exact. (Normal is 1800 – 8000) They will be 0 tomorrow when they take his blood. O, nada, none. No white blood cells. Nothing to fend off virus’, fungus’, or bacterias. All milk products are officially band (unless they are cooked). The only fruit available are oranges and bananas because of their thick skin. No salads, restaurant food. No fresh vegetables. The simple act of not washing my hands before I hand him something can make him sick. Someone had a child in the center on Friday, a coughing child. I wanted to pick up that germ bag and remove it, then walk in and scold the parents –people who were beyond realizing that this was a “cancer treatment center” and there are people here who “are sick.” I didn’t know I would so fierecly want to do bodily harm anyone who sneezed or coughed within a 5 mile radious of Art.
Art walked down to the cancer treatment center today. For the past three days, he has been too fatigued to make the walk, using a wheelchair instead. He still walks at the approximate speed of an 18 month old toddler, although with more focus and no stopping. Stopping means not going again. At home, he hasn’t sat at the dinner table for the same number as days. I have to remind him to take his medicines. I help him undress every night. It's like living, I assume, with an elderly patient who needs assistance in almost everything he/she does. Only, this is not an elderly man, this is my 42 year old husband.
If I had a sledge hammer, I am sure I could break through four concrete walls with one blow. As I picked up the hammer, all the frustration, stress and anger from Art, the kdis and me would be drawn into the wooden handle. My own will would swing the hammer high and strong over my right shoulder. Gravity and my anticipation of release would power the momentum of the hammer down. It would trigger the flow of emotion from the handle to the metal mallet. The force would ravage four walls. After being hit, the walls would crumble in defeat and the emotions of this journey would dissipate with the dust. I would walk away feeling my "wrecking ball" power.
A Side Note. I have had no formal training as a writer, heck I graduated college with a degree in speech pathology. I have always used Art as my editor. He was able to read my work with a “professional” eye, asking questions and make suggestions that would take whatever I wrote to the next level. That last paragraph, “if I had a sledge hammer” is also a victim of this disease. The idea is present, but something is missing from it (you writers totally know what I’m talking about). It needs work and I am incapable of figuring out what to do. There have been moments when I have "channeled" Art, making the changes I know he would suggest. At present my own fatigue has made me incapable of that and Art is under the chemo haze, uanble to focus long enough to help me. The rage I feel at this moment could probably knock down this whole building. I miss him.
Friday, February 09, 2007
To Do List Update
Thank you to all of you! The to do list is almost done and for now we need no more volunteers. Can't thank you all enough.
Thursday, February 08, 2007
Numbers
Numbers
63 and 0
63 viable units of blood were giving at The Windward School yesterday in Art’s name. Art things that’s the most the school has ever gotten! Oh crap, once again, I wish there was a different word, more of a word, than “thank you” though would express our gratitude.
0. Today is day 0. In about 10 minutes, Art’s stem cells will be infused back into him. A nurse will stay in the room with us for two hours while the stem cells make their way back into his body. The doctor will remain within shouting distance. They are using his stem cells to “rescue” him. In other words, if there were not stem cells to transplant, Art would not be of this world for long. The 5 day chemo regiment has disabled his body from producing white or red cells. His stem cells will start the process up again. In the meantime, we will use transfusions to keep his red count at normal levels.
From this day on, we will count days in numbers. Numbers set from this arbitrary day forward. We will report in to the center every single day, just as we have been doing for three weeks. Success is reached when his counts go up to normal level. It can take anywhere from 7 (very rare) to 45 (rare) days. That’s one week to 6 weeks.
Art is fatigued, sleeps a lot and struggles to find the energy to make it to the car, or walk to the apartment. He is too tired to feel frustrated and cries quietly sometimes instead.
The stress rides high in my shoulders and oddly enough, at the top of my head, where even the simplest pat causes pain. I know all the things I “should” be doing to take care of myself but for now, just remembering to drink water and eat a piece of fruit is a triumph worth noting. I keep repeating to myself “this to will pass, this too will pass.” It would be a hell of lot easier if I knew when that would be.
63 and 0
63 viable units of blood were giving at The Windward School yesterday in Art’s name. Art things that’s the most the school has ever gotten! Oh crap, once again, I wish there was a different word, more of a word, than “thank you” though would express our gratitude.
0. Today is day 0. In about 10 minutes, Art’s stem cells will be infused back into him. A nurse will stay in the room with us for two hours while the stem cells make their way back into his body. The doctor will remain within shouting distance. They are using his stem cells to “rescue” him. In other words, if there were not stem cells to transplant, Art would not be of this world for long. The 5 day chemo regiment has disabled his body from producing white or red cells. His stem cells will start the process up again. In the meantime, we will use transfusions to keep his red count at normal levels.
From this day on, we will count days in numbers. Numbers set from this arbitrary day forward. We will report in to the center every single day, just as we have been doing for three weeks. Success is reached when his counts go up to normal level. It can take anywhere from 7 (very rare) to 45 (rare) days. That’s one week to 6 weeks.
Art is fatigued, sleeps a lot and struggles to find the energy to make it to the car, or walk to the apartment. He is too tired to feel frustrated and cries quietly sometimes instead.
The stress rides high in my shoulders and oddly enough, at the top of my head, where even the simplest pat causes pain. I know all the things I “should” be doing to take care of myself but for now, just remembering to drink water and eat a piece of fruit is a triumph worth noting. I keep repeating to myself “this to will pass, this too will pass.” It would be a hell of lot easier if I knew when that would be.
Monday, February 05, 2007
Blood Donations --- A Call to Arms -- Excuse the pun
On Wednesday, February 7, Windward School will be holding a community blood drive to help and honor Art. The drive will be from 8:30 am – 2:00 pm. It will be held in the school gym, located at
Here are the details:
· Please book an appointment by emailing Meredith Hamel at the following address mhamel@windwardschool.org before Wednesday….hmm that would mean doing it tonight or tomorrow. (My aplogies for the last minute notice!) Include you phone number.
· If you know that you are O+ or O- and wish to be on Art’s direct donation list (where we call you to come in when we need blood) please DO NOT donate at the school. Please call Karen Sacks, a friend who is coordinating donors, at 310-486-0036
· If you would like to donate platelets (a process that takes an hour plus as opposed to the 30 - 45 minutes for blood donation), also call Karen Sacks.
· If you are not O+ or O-, please donate anyway. Art has had 4 transfusions in the last month. To say we are grateful for those anonymous donors who literally have kept him alive is like saying “He has cancer.” The words do not describe the experience.
Below are the guidelines to donating. And thank you one and all again for you help, prayers and love. As embarrassed as I feel sometimes that we cannot handle this alone (I know, need to seek therapy around that issue), I am rendered speechless to see how quickly and often you have stepped up.
BLOOD DONATION GUIDELINES
To qualify, donors must meet all the following standards:
· Be at least 17 years old (no upper limit), healthy, feel well on day of donation and weigh at least 110 pounds.
· No dental surgery within 72 hours prior to donation.
· Not currently taking antibiotics (except when treating acne).
· Not taking Accutane, Proscar or Propecia within the past 30 days.
· No travel to a malaria zone in the past 12 months.
· No tattoos, ear or body piercing within the past 12 months.
· Cancer free during the last five years and have never received chemotherapy. (Isn’t that ironic. Art will no longer be able to give blood!) OK to donate if treated for localized skin cancer.
· Never used intravenous drugs.
· No history of hepatitis or HIV (AIDS).
· No close contact with someone who has hepatitis.
Cannot donate if you have:
· Spent a combined total of 3 months or more in the United Kingdom between 1980 and1996.
· Spent a combined total of 5 years or more in Europe since 1980 to the present (including time spent in the UK from 1980-1996).
· Resided on a US military base in Europe for 6 months or morefrom 1980-1996. Male donors must not have had sex with another male (even once) since 1977.
Here are the details:
· Please book an appointment by emailing Meredith Hamel at the following address mhamel@windwardschool.org before Wednesday….hmm that would mean doing it tonight or tomorrow. (My aplogies for the last minute notice!) Include you phone number.
· If you know that you are O+ or O- and wish to be on Art’s direct donation list (where we call you to come in when we need blood) please DO NOT donate at the school. Please call Karen Sacks, a friend who is coordinating donors, at 310-486-0036
· If you would like to donate platelets (a process that takes an hour plus as opposed to the 30 - 45 minutes for blood donation), also call Karen Sacks.
· If you are not O+ or O-, please donate anyway. Art has had 4 transfusions in the last month. To say we are grateful for those anonymous donors who literally have kept him alive is like saying “He has cancer.” The words do not describe the experience.
Below are the guidelines to donating. And thank you one and all again for you help, prayers and love. As embarrassed as I feel sometimes that we cannot handle this alone (I know, need to seek therapy around that issue), I am rendered speechless to see how quickly and often you have stepped up.
BLOOD DONATION GUIDELINES
To qualify, donors must meet all the following standards:
· Be at least 17 years old (no upper limit), healthy, feel well on day of donation and weigh at least 110 pounds.
· No dental surgery within 72 hours prior to donation.
· Not currently taking antibiotics (except when treating acne).
· Not taking Accutane, Proscar or Propecia within the past 30 days.
· No travel to a malaria zone in the past 12 months.
· No tattoos, ear or body piercing within the past 12 months.
· Cancer free during the last five years and have never received chemotherapy. (Isn’t that ironic. Art will no longer be able to give blood!) OK to donate if treated for localized skin cancer.
· Never used intravenous drugs.
· No history of hepatitis or HIV (AIDS).
· No close contact with someone who has hepatitis.
Cannot donate if you have:
· Spent a combined total of 3 months or more in the United Kingdom between 1980 and1996.
· Spent a combined total of 5 years or more in Europe since 1980 to the present (including time spent in the UK from 1980-1996).
· Resided on a US military base in Europe for 6 months or morefrom 1980-1996. Male donors must not have had sex with another male (even once) since 1977.
A Call for Help....Again
Once again, I find myself stepping into the uncomfortable zone. To ask for a meal, rides and play dates for the kids in one thing, but to ask someone to run an errand for us makes me uncomfortable (even after all this time). Merely admitting that I’m in over my head forces me to face the truth: I am ill equipped to handle the rigors of normal life. You can’t see it, like a cancer, and that’s what makes it hard for me to accept. That fact makes me squirm. I mean, come on, stress is for other people, not me…darn it.
Here is a list of items that I need taken care of. Returns and projects around the house have all fallen to the way side (again) in the last two weeks. I am living in the apartment with Art and staying by his side as much as I can. So…I wave the white flag and implore you to help. I am slightly embarrassed by this list. In a way, it’s a glimpse into our personal lives and I am asking for assistance with things that I would do in a moment if it wasn’t for the gargantuan monster called cancer. In a way, maybe this could be a lesson for all of us. Asking for help is the hardest thing to do, but is one of the most rewarding. Contrary to that little voice that says “Who’s gonna take time out from their busy day to help you?” I am awed at how many people step forward. In fact, I think all of us would be humbled to see how many lives we have touched. It is far greater than you think, trust me.
NOTE: Please call Cicely Flemming at (310) 231-0257 if you can help with anything on this list. DO NOT CALL ME! I can’t get anything done, let alone remember who will do it for me! Thank You.
Airport Rides Tuesday late morning and early afternoon.
- Drop off my friend Jennifer who has been staying with the kids, at LAX. Her flight leaves at 11:20 am
Pick up my mother who will be staying with the kids, from Long Beach. Her flight gets in at 2:43 - Post Office run
- Returns
Neiman Marcus
Nordstrom Rack
Ross
Sears - Lunch boxes for Ezra and Langston
- Aaron vet visit
- Wills for Art and I
- Craig’s list --- a table and trunk
- Handyman
Hang lights
Hang glass shelf
Hang light above kid’s bed - Picture of long trunk for appraisal ( because I need the darn thing out of my house!)
- Costco shopper (on-call)
- Buy battery for home phone (Radio Shack?)
I am grateful that I get to say this alot. Thank You
Friday, February 02, 2007
No Ride Needed -- More Blood
Good tears are a great thing. Thank you for giving me the opportunity to switch from bitter, angry tears to happy, thankful ones.
After my post, Karen's phone was swamped with calls regarding donating blood. I recieved 20 emails and 9 phone messages with in 45 mintues of posting. All of them offering rides. Barbara has the opportunity to ride back and forth to Long Beach, all day, if she so chooses to.
Political candidates wish they had our network of help!
P.S. More on blood donation in a moment.
After my post, Karen's phone was swamped with calls regarding donating blood. I recieved 20 emails and 9 phone messages with in 45 mintues of posting. All of them offering rides. Barbara has the opportunity to ride back and forth to Long Beach, all day, if she so chooses to.
Political candidates wish they had our network of help!
P.S. More on blood donation in a moment.
Immediate Needs
Having the proverbial door slammed in our proverbial face has left me proverially pissed off. However, my anger never got anthing done, other than cause huge knots in my shoulders, so here I am asking for help...fucking again.
Our immediate needs are:
1. Someone to drive my sister-in-law to LGB Airport tomorrow, Saturday. Pick up time 7:00 am (6:45 if you are one of those late people like me)
2. If you have O+ or O- blood, I ask that you get on Art's donor list. He will be needing blood most likely by the beginning of next week. It is very helpful to be able to call people directly and ask them to donate. Please contact Karen Sachs at 310-202-6151. For the rest of you all, Art's school will be hosting a blood drive next week or you can come to Cedar Sinai and donate platelets (no matter your blood type) becuase Art will need that too. Details to follow.
3. Can't do these two things. Do not fret! There is a bigger list coming, but first I need to get out of my own proverbial way.
Our immediate needs are:
1. Someone to drive my sister-in-law to LGB Airport tomorrow, Saturday. Pick up time 7:00 am (6:45 if you are one of those late people like me)
2. If you have O+ or O- blood, I ask that you get on Art's donor list. He will be needing blood most likely by the beginning of next week. It is very helpful to be able to call people directly and ask them to donate. Please contact Karen Sachs at 310-202-6151. For the rest of you all, Art's school will be hosting a blood drive next week or you can come to Cedar Sinai and donate platelets (no matter your blood type) becuase Art will need that too. Details to follow.
3. Can't do these two things. Do not fret! There is a bigger list coming, but first I need to get out of my own proverbial way.
Thursday, February 01, 2007
Four Days Gone
I leave the treatment center to see my spiritual advisor. The phone rings as I am crossing the street. It’s Art. “They want to start chemo today or tomorrow” he says.
I am silent. What about our four days of normality? What about our FOUR DAYS?! I exhale anger and inhale fear.
“They can’t” I say. “Tell them to wait till I get back.” I hang up.
My stomach lurches. I turn, walk two steps to a bush. I throw up.
“Huh” I think, “the connection between body and mind is amazing.”
Fury forces the last bit of saliva to leave my mouth like an arrow from a bow. I reach for my phone.
“You tell them not today. They cannot fucking start today!” The Lord giveth four days and then the Lord taketh away four days. But not without a fight.
I returned to the hospital an hour later. I spoke with the doctor, or rather I sobbed and managed to fit in a few words.
“You have to let him , come home. He, he, he has to see our kids. If he dies, I can’t live with the fact that the kids didn’t get to see him. Can you? You can’t do this! You just can’t do this to them, to me, to Art. Please, you have to let him come home. You said we had four days!”
In mature speak, it sounds like this. ‘You have surprised me and I am emotionally not prepared. I have handled all that you have thrown at me but enough is enough. How dare you! How dare you set us up to have this little dream of a respite and then take it away! You have unleashed the fury of a tired, outspoken, overwrought woman. You have crossed the line.
A compromise was reached. We got 4 hours in place of the four days. They will start with Rituxan, the happy chemo drug, at 8:00 pm tonight. We can go home and spend 3 hours with the kids. Four days to four hours. Allowing time for the cancer to grow to not giving it the opportunity to think about growing. No good choices available. God how I wish I had some kind of vice to drown the frustration and fear in. Should have skipped more therapist appointments!
I am silent. What about our four days of normality? What about our FOUR DAYS?! I exhale anger and inhale fear.
“They can’t” I say. “Tell them to wait till I get back.” I hang up.
My stomach lurches. I turn, walk two steps to a bush. I throw up.
“Huh” I think, “the connection between body and mind is amazing.”
Fury forces the last bit of saliva to leave my mouth like an arrow from a bow. I reach for my phone.
“You tell them not today. They cannot fucking start today!” The Lord giveth four days and then the Lord taketh away four days. But not without a fight.
I returned to the hospital an hour later. I spoke with the doctor, or rather I sobbed and managed to fit in a few words.
“You have to let him ,
In mature speak, it sounds like this. ‘You have surprised me and I am emotionally not prepared. I have handled all that you have thrown at me but enough is enough. How dare you! How dare you set us up to have this little dream of a respite and then take it away! You have unleashed the fury of a tired, outspoken, overwrought woman. You have crossed the line.
A compromise was reached. We got 4 hours in place of the four days. They will start with Rituxan, the happy chemo drug, at 8:00 pm tonight. We can go home and spend 3 hours with the kids. Four days to four hours. Allowing time for the cancer to grow to not giving it the opportunity to think about growing. No good choices available. God how I wish I had some kind of vice to drown the frustration and fear in. Should have skipped more therapist appointments!
10,000,000
10,000,000!!!!!!!!!
That’s how many stem cells my man-of-a-man husband has produced. The goal was 5 million, and being the competitive guy that he is, he decided that was not good enough. He made 7.7 million in one day. Impressive, I know.
After leaving the cancer center at 12:30 am last night, we returned here at 6 am. The headache is prevailing although not with as much intensity, and the last time he had a fever was at 7 am. It's now 10:30.
On February 8th, 2007, the last round (the stem cell transplant procedure) will start, one week from today. However, before we begin that odessy, he will come home. We will be on furlough from this joint. Art can come home, sit on his couch, eat what ever he likes and sleep in OUR bed! He has been gone for two weeks. He has seen the kids only once during that time. For four days we will be a normal family, just like all those other normal families with bald fathers.
That’s how many stem cells my man-of-a-man husband has produced. The goal was 5 million, and being the competitive guy that he is, he decided that was not good enough. He made 7.7 million in one day. Impressive, I know.
After leaving the cancer center at 12:30 am last night, we returned here at 6 am. The headache is prevailing although not with as much intensity, and the last time he had a fever was at 7 am. It's now 10:30.
On February 8th, 2007, the last round (the stem cell transplant procedure) will start, one week from today. However, before we begin that odessy, he will come home. We will be on furlough from this joint. Art can come home, sit on his couch, eat what ever he likes and sleep in OUR bed! He has been gone for two weeks. He has seen the kids only once during that time. For four days we will be a normal family, just like all those other normal families with bald fathers.
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