This article, "Want a Zillion-Dollar Cure Idea?" in the International Herald Tribune is written by a woman suffering from Hand-Foot Syndrome. She has found something to relieve the chemo-induced pain in her feet.
I thought this might be of help or interest to anyone out there on Xeloda or other chemo that causes Hand-Foot Syndrome.
Have a good weekend!
Friday, August 29, 2008
Thursday, August 28, 2008
What Goes Through My Mind?
A blog reader has asked what goes through my mind as I lie on the table getting radiation to my brain. I'd have to say... not much. The actual time on the cold, hard slab lasts less than ten minutes, so I'm in and out fairly quickly.
Sure, I could let my mind wander to... "Oh no! This is serious! I'm going to die! This is it! The beginning of the end!"
Been there and done that, then I moved on to... "We've chosen what we know to be the best course of treatment, so let's do what we can medically to control these tumors in my brain and the cancer running amok in the rest of my body. We know there's no cure, but we'll keep doing the best we can to prolong my life and quality of life for as long as we can."
Meanwhile, I'll continue to eat, sleep, and breathe, enjoy the company of family and friends, watch entire TV seasons (thanks to my friends with extensive DVD collections to help me escape from cancer for hours at a time!), cuddle up and read with my kids, and watch Tony, Josie, and Toby go on enjoying their lives.
Cancer sucks, but life is still wonderful.
Sure, I could let my mind wander to... "Oh no! This is serious! I'm going to die! This is it! The beginning of the end!"
Been there and done that, then I moved on to... "We've chosen what we know to be the best course of treatment, so let's do what we can medically to control these tumors in my brain and the cancer running amok in the rest of my body. We know there's no cure, but we'll keep doing the best we can to prolong my life and quality of life for as long as we can."
Meanwhile, I'll continue to eat, sleep, and breathe, enjoy the company of family and friends, watch entire TV seasons (thanks to my friends with extensive DVD collections to help me escape from cancer for hours at a time!), cuddle up and read with my kids, and watch Tony, Josie, and Toby go on enjoying their lives.
Cancer sucks, but life is still wonderful.
Wednesday, August 27, 2008
Cancer, the Global Economic Crisis
I've been looking into non-chemo treatment options for the tumors in my body - liver, lungs, brain, bones, lymph nodes, and soft tissue in the chest wall. I've come across several that seemed promising for the liver tumors at first. But upon further investigation, it seems the tumors in my liver are too big and numerous to qualify me for any surgical, laser, thermal, radio, or other procedures for the liver. There's no point in getting rid of tumors in the liver when I have cancer spread throughout the rest of my body.
But I wanted to consult a surgeon specializing in breast cancer or breast cancer that has metastasized (spread) to the liver, just to get a more focussed perspective. To put it in language that my financial husband is familiar with... leaving the treatment of my liver tumors to a general oncologist might be like talking to an Asia bank analyst instead of a specialist Singapore bank analyst. Tony's response: There's a global economic crisis going on in my body, so focussing on just solving the Singapore bank problem is pointless.
And then my ex-financial friend suggested: Couldn't we talk to a global economic strategist AND a Singapore bank analyst to get the broad as well as the narrow perspective? Meanwhile, we could inject some capital into Singapore banks (my liver) to help them weather the global economic crisis better.
And then I thought... chemo is like the IMF: Painful, but necessary measures for long-term survival.
At this point, I remembered why I left CNBC. Financial news reporting is almost as painful as cancer!
But I wanted to consult a surgeon specializing in breast cancer or breast cancer that has metastasized (spread) to the liver, just to get a more focussed perspective. To put it in language that my financial husband is familiar with... leaving the treatment of my liver tumors to a general oncologist might be like talking to an Asia bank analyst instead of a specialist Singapore bank analyst. Tony's response: There's a global economic crisis going on in my body, so focussing on just solving the Singapore bank problem is pointless.
And then my ex-financial friend suggested: Couldn't we talk to a global economic strategist AND a Singapore bank analyst to get the broad as well as the narrow perspective? Meanwhile, we could inject some capital into Singapore banks (my liver) to help them weather the global economic crisis better.
And then I thought... chemo is like the IMF: Painful, but necessary measures for long-term survival.
At this point, I remembered why I left CNBC. Financial news reporting is almost as painful as cancer!
Tuesday, August 26, 2008
Brain Radiation Photos
Here are some photos of how I spend a part of my afternoons these days. And to think... I used to get claustrophobic!
Monday, August 25, 2008
From A Fellow Brain Cancer Patient
My brother has a friend who's been living with a brain tumor for the past 12 years. I find some reassurance in his story, so I'd like to share it with you. His name is David Bailey. Here is his story:
The house was packed up. The moving van was on the way; we were on our way to Boston for a new job, a new house and a new life. I was 30 years old. My kids were 2 & 4. My wife was crossing all the T's and dotting all the I's for the big move. Hours later, I was on a helicopter on my way to emergency surgery.
The malignant tumor was the size of a baseball and everyone agreed I'd be dead in a matter of months. I woke up a day later with the news. A week after that came the long walk and the epiphany I've told so many about - the one where I yelled "why me" and God showed me a better question: "What now?"
So today, 12 years later, I find I am still asking it. And while the answers are still sometimes elusive, I still enjoy asking. I could never have imagined that the last decade would see 17 CD's released and performances in 44 states. That's crazy. Makes me really curious about the next 12.
I recently started a song about how I wondered if I had anything left to say. I think so. Though today I am caused to recall the song that started this journey. - "To The World" written on the back of a dollar bill on another long walk. It still does maybe the best job of capturing those early questioning moments and setting the stage for what was to come - a stage I could not have ever imagined.
To those of you who have lost loved ones in this time, know that I am humbled in your presence. To those still fighting the good fight: Keep on keeping on. Hope does live. But you already knew that. Each of you is proof.
Peace,
David
Music - www.cdbaby.com/dbailey
Info - www.davidmbailey.com
___________________
To The World
What is life if not a chance to make a difference
What are days if not different chances to live
What is time if not a season for renewal
What is renewal but another chance to give love, to the world
What are friends if not reflections of the spirit,
What is hope if not a blending of the future and the past
What are dreams if not decisions to awaken
The soul that conquers fear is the only one that lasts
Long enough, to give love to the world
It's not a question of freedom; it’s not a question of pain
It's just a matter of learning
We all must feel the loss before we know the gain
So when the demons and the dragons come to haunt you
And you're certain that the chance for peace is gone
Close your eyes and listen to the wind blow;
You'll hear His voice of love passing through, passing on
Giving love to the world
The house was packed up. The moving van was on the way; we were on our way to Boston for a new job, a new house and a new life. I was 30 years old. My kids were 2 & 4. My wife was crossing all the T's and dotting all the I's for the big move. Hours later, I was on a helicopter on my way to emergency surgery.
The malignant tumor was the size of a baseball and everyone agreed I'd be dead in a matter of months. I woke up a day later with the news. A week after that came the long walk and the epiphany I've told so many about - the one where I yelled "why me" and God showed me a better question: "What now?"
So today, 12 years later, I find I am still asking it. And while the answers are still sometimes elusive, I still enjoy asking. I could never have imagined that the last decade would see 17 CD's released and performances in 44 states. That's crazy. Makes me really curious about the next 12.
I recently started a song about how I wondered if I had anything left to say. I think so. Though today I am caused to recall the song that started this journey. - "To The World" written on the back of a dollar bill on another long walk. It still does maybe the best job of capturing those early questioning moments and setting the stage for what was to come - a stage I could not have ever imagined.
To those of you who have lost loved ones in this time, know that I am humbled in your presence. To those still fighting the good fight: Keep on keeping on. Hope does live. But you already knew that. Each of you is proof.
Peace,
David
Music - www.cdbaby.com/dbailey
Info - www.davidmbailey.com
___________________
To The World
What is life if not a chance to make a difference
What are days if not different chances to live
What is time if not a season for renewal
What is renewal but another chance to give love, to the world
What are friends if not reflections of the spirit,
What is hope if not a blending of the future and the past
What are dreams if not decisions to awaken
The soul that conquers fear is the only one that lasts
Long enough, to give love to the world
It's not a question of freedom; it’s not a question of pain
It's just a matter of learning
We all must feel the loss before we know the gain
So when the demons and the dragons come to haunt you
And you're certain that the chance for peace is gone
Close your eyes and listen to the wind blow;
You'll hear His voice of love passing through, passing on
Giving love to the world
Friday, August 22, 2008
Sneaky Side-Effects, Radiation # 1
I once said that if the side-effects of the chemo greatly diminished my quality of life, I'd stop chemo and choose quality over quantity.
I just realized that I've spent most of the past few weeks lying in bed with my feet up because I can't walk around much due to the Hand-Foot Syndrome cause by chemo. I haven't done the shopping, run errands to the bank or post office, played with my kids, or gone anywhere other than to doctor's appointments and a few outings that required minimal walking, or hobbling on my heels. And, of course, the emergency trip to the hospital in the middle of the night.
I'd been telling myself that I'd just rest my feet for a few days and they'd be fine. My doctor said my feet would get better after a few days off chemo, but it's been almost a week now and it's still hard to walk around.
These chemo side-effects have a way of sneaking up on me. Each time I start to feel something, I think it's just a small problem, a temporary problem. But before I realize what's happening, I'm smack in the middle of the full-blown side-effect described in the pamphlets. Not being able to walk doesn't seem like such a small problem anymore. Not being able to do simple, everyday things definitely qualifies as diminished quality of life. And so do numbness and seizures in the night, although that's a tumor problem, not a chemo problem.
I'm going to have to think long and hard about this before choosing my next chemo combo. I also start my whole-brain radiation treatment today. I don't want to end up with more side-effects that will prevent me from performing daily tasks and enjoying time with my family and friends. This is no way to live.
I just realized that I've spent most of the past few weeks lying in bed with my feet up because I can't walk around much due to the Hand-Foot Syndrome cause by chemo. I haven't done the shopping, run errands to the bank or post office, played with my kids, or gone anywhere other than to doctor's appointments and a few outings that required minimal walking, or hobbling on my heels. And, of course, the emergency trip to the hospital in the middle of the night.
I'd been telling myself that I'd just rest my feet for a few days and they'd be fine. My doctor said my feet would get better after a few days off chemo, but it's been almost a week now and it's still hard to walk around.
These chemo side-effects have a way of sneaking up on me. Each time I start to feel something, I think it's just a small problem, a temporary problem. But before I realize what's happening, I'm smack in the middle of the full-blown side-effect described in the pamphlets. Not being able to walk doesn't seem like such a small problem anymore. Not being able to do simple, everyday things definitely qualifies as diminished quality of life. And so do numbness and seizures in the night, although that's a tumor problem, not a chemo problem.
I'm going to have to think long and hard about this before choosing my next chemo combo. I also start my whole-brain radiation treatment today. I don't want to end up with more side-effects that will prevent me from performing daily tasks and enjoying time with my family and friends. This is no way to live.
Thursday, August 21, 2008
Cure Me, Have My Husband
Tony told me something recently that really surprised me. He said that if I were cured of cancer, he'd believe in God. He said that it's a medical impossibility now that I can be cured, so if my cancer actually disappears, he'll take that as the evidence he needs to believe in God. Not only that, he said he'd tell as many people as he could about my miracle cure and God.
Are you listening, God? Tony would make a great spokesman for you. He could sell bank stocks to investors during the height of the Asian financial crisis in the late 1990s; he can surely sell you to non-believers and fence-sitters. All you have to do is cure me of cancer and Tony's your man.
As for me... if by some miracle, my cancer completely disappeared, I'd be inclined to think it was a miracle of science and medicine. I don't think God orchestrates miracles. That's just showing off, and I think God's better than that.
Are you listening, God? Tony would make a great spokesman for you. He could sell bank stocks to investors during the height of the Asian financial crisis in the late 1990s; he can surely sell you to non-believers and fence-sitters. All you have to do is cure me of cancer and Tony's your man.
As for me... if by some miracle, my cancer completely disappeared, I'd be inclined to think it was a miracle of science and medicine. I don't think God orchestrates miracles. That's just showing off, and I think God's better than that.
Brain MRI Result
I now have five tumors in my brain, up from three back in February. The largest measures 2.12 cm. Four of the tumors are on the left side of the brain, and the remaining one is on the right. That explains why I've lost some feeling and co-ordination in my right hand.
I met with my medical oncologist (chemo doc) and radiation oncologist and the two agree that I need to have whole-brain radiation. Gamma knife, X-knife, and Novalis radiosurgery are other options, but they're targeted at the tumors only and will not get at any stray cancer cells or tumors that are too small to show up on the scan. Since my cancer is pretty widespread throughout the rest of my body, we can assume that getting rid of the tumors one-by-one isn't going to help much since they'll just keep growing back.
So, I had my radiation mask custom-made for me today and I'll start a ten-day course of radiation to the brain on Friday. I'll lose my hair again and I'll get chemo-fatigue. I might have some short-term memory loss as well, the doctor said. Maybe I'll forget I have cancer!
I met with my medical oncologist (chemo doc) and radiation oncologist and the two agree that I need to have whole-brain radiation. Gamma knife, X-knife, and Novalis radiosurgery are other options, but they're targeted at the tumors only and will not get at any stray cancer cells or tumors that are too small to show up on the scan. Since my cancer is pretty widespread throughout the rest of my body, we can assume that getting rid of the tumors one-by-one isn't going to help much since they'll just keep growing back.
So, I had my radiation mask custom-made for me today and I'll start a ten-day course of radiation to the brain on Friday. I'll lose my hair again and I'll get chemo-fatigue. I might have some short-term memory loss as well, the doctor said. Maybe I'll forget I have cancer!
Back Home
I got back home from the hospital yesterday. I don't remember much of what happened. I remember feeling a bit of numbness and loss of co-ordination in my right hand and foot on Sunday night. I remember, as I went to bed, thinking that this could be it and that I might never wake up. I was thinking about a guy I knew of who went to bed with a bad headache and died in his sleep.
The next thing I remember is being in the ambulance, feeling panicked, claustrophobic, and suffocated. I kept trying to sit up but the nurses and Tony kept pushing me down. And then I guess I passed out again after a few minutes of that because the next thing I remember is waking up in the hospital, hooked up to a drip, with Tony sitting next to me. He explained to me what had happened.
I felt fine, except that during my seizures, of which I had several, I knocked off the bandages on my two big toes, along with the skin. Now I have red, raw, skinless toes that are painful to the slightest touch, and that means I have to wait even longer now before starting on the next chemo regimen.
I had a brain MRI yesterday so we can see what's going on in there. I'll get the results later today and maybe decide what to do about those brain tumors that seem to be growing. I'm wondering if we should do something about the cancer in my bones as well, instead of waiting until they actually cause symptoms as we did with the brain tumors. I don't feel like any more ambulance rides to the hospital in the middle of the night.
This episode has gotten us all a bit spooked. I guess I'm not going to live forever after all. It appears my cancer is continuing to spread and we're down to the last remaining options for treatment. I guess the best we can do now is to keep going with whatever is available to me and hope for the best. Meanwhile, I suppose I should take this dying thing a bit more seriously and get moving on things I wanted to leave behind for the kids.
I'll post again later after we get the results of the brain MRI.
Thanks to all of you for your concern and offers of help. We're really lucky to have such kind family, friends, and neighbors.
The next thing I remember is being in the ambulance, feeling panicked, claustrophobic, and suffocated. I kept trying to sit up but the nurses and Tony kept pushing me down. And then I guess I passed out again after a few minutes of that because the next thing I remember is waking up in the hospital, hooked up to a drip, with Tony sitting next to me. He explained to me what had happened.
I felt fine, except that during my seizures, of which I had several, I knocked off the bandages on my two big toes, along with the skin. Now I have red, raw, skinless toes that are painful to the slightest touch, and that means I have to wait even longer now before starting on the next chemo regimen.
I had a brain MRI yesterday so we can see what's going on in there. I'll get the results later today and maybe decide what to do about those brain tumors that seem to be growing. I'm wondering if we should do something about the cancer in my bones as well, instead of waiting until they actually cause symptoms as we did with the brain tumors. I don't feel like any more ambulance rides to the hospital in the middle of the night.
This episode has gotten us all a bit spooked. I guess I'm not going to live forever after all. It appears my cancer is continuing to spread and we're down to the last remaining options for treatment. I guess the best we can do now is to keep going with whatever is available to me and hope for the best. Meanwhile, I suppose I should take this dying thing a bit more seriously and get moving on things I wanted to leave behind for the kids.
I'll post again later after we get the results of the brain MRI.
Thanks to all of you for your concern and offers of help. We're really lucky to have such kind family, friends, and neighbors.
Tuesday, August 19, 2008
Shin is in the Hospital
This is Tony writing for Shin.
Shin had a seizure on Sunday night and I got an ambulance to take her to the hospital. Very scary, but the good news is she is stable, alert and in good spirits now. They have given her anti-seizure medication (valium and epilim) and she seems normal now. Her doctor thinks she can come home from the hospital tomorrow.
At this stage it looks like the brain tumors may be growing, and may have caused some swelling that lead to the seizures. On Sunday night at dinner Shin mentioned she felt a bit odd and that she felt as if she were losing some co-ordination of her right hand. She had trouble cutting her food and put down her glass of water on her plate. We didn't really dwell on it but I guess we were both thinking about the brain tumors. We said we would go see the doctor first thing in the morning, but in hindsight that was a mistake and we should have called the doctor right away.
Shin will have an MRI tomorrow and we will figure out what to do after that. Gamma knife and radiation are possible options. Neither sound very nice, but I took comfort from the fact we were moving on from dealing with the panic of the night before and moving on to a standard course of treatment.
Fortunately, we had several guests visiting. Clare and Ivan were up from Brisbane and Ward was stopping by Singapore on his way returning from India to Australia. It was a big relief to have their help in getting Shin to the ambulance and taking care of Josie and Toby.
Josie and Toby are doing well. They both woke up and heard Shin, but I told them we were taking Shin to the hospital to get some medicine and they accepted that and went back to sleep. It's amazing how resilient kids can be.
I myself feel as though I have been realistic but optimistic about the odds Shin faces, and I thought I was ready for what may come. But I am more shaken and sadder than I thought I'd be after 2 years of living with the fact that Shin has an aggressive type of cancer. And I guess it's mostly a symbolic thing but today was Toby's first day of school - and it made me so sad. I'm not exactly sure why, but I guess it's a combination of knowing how much Shin loves days like this, and knowing how small he is but how excited he is to get on with his life.
The good news is Shin should be able to post again in a couple of days. Thanks to everyone for your support. It's touching how readers were concerned that Shin didn't post today, that neighbors were concerned that an ambulance came, the concern of Toby's school teachers and friends calling in from all over. Shin is special.
Shin had a seizure on Sunday night and I got an ambulance to take her to the hospital. Very scary, but the good news is she is stable, alert and in good spirits now. They have given her anti-seizure medication (valium and epilim) and she seems normal now. Her doctor thinks she can come home from the hospital tomorrow.
At this stage it looks like the brain tumors may be growing, and may have caused some swelling that lead to the seizures. On Sunday night at dinner Shin mentioned she felt a bit odd and that she felt as if she were losing some co-ordination of her right hand. She had trouble cutting her food and put down her glass of water on her plate. We didn't really dwell on it but I guess we were both thinking about the brain tumors. We said we would go see the doctor first thing in the morning, but in hindsight that was a mistake and we should have called the doctor right away.
Shin will have an MRI tomorrow and we will figure out what to do after that. Gamma knife and radiation are possible options. Neither sound very nice, but I took comfort from the fact we were moving on from dealing with the panic of the night before and moving on to a standard course of treatment.
Fortunately, we had several guests visiting. Clare and Ivan were up from Brisbane and Ward was stopping by Singapore on his way returning from India to Australia. It was a big relief to have their help in getting Shin to the ambulance and taking care of Josie and Toby.
Josie and Toby are doing well. They both woke up and heard Shin, but I told them we were taking Shin to the hospital to get some medicine and they accepted that and went back to sleep. It's amazing how resilient kids can be.
I myself feel as though I have been realistic but optimistic about the odds Shin faces, and I thought I was ready for what may come. But I am more shaken and sadder than I thought I'd be after 2 years of living with the fact that Shin has an aggressive type of cancer. And I guess it's mostly a symbolic thing but today was Toby's first day of school - and it made me so sad. I'm not exactly sure why, but I guess it's a combination of knowing how much Shin loves days like this, and knowing how small he is but how excited he is to get on with his life.
The good news is Shin should be able to post again in a couple of days. Thanks to everyone for your support. It's touching how readers were concerned that Shin didn't post today, that neighbors were concerned that an ambulance came, the concern of Toby's school teachers and friends calling in from all over. Shin is special.
Friday, August 15, 2008
Toby Funnies
This is Part Two of funny stories about my kids, following last Friday's post about Josie.
Toby's teacher said she asked him what he wanted to be when he grew up and he said, "A Daddy". I thought Tony would be touched to hear that answer, so later the same day while Tony was listening, I asked Toby what he wanted to be, and he said, "I wanna be Superman and drive a car fast." I tried to prompt him, "Your teacher said you wanted to be a Daddy when you grew up." Toby stuck to his guns, "I don't wanna be a Daddy anymore. I wanna be Superman and drive a car fast." Sorry, Tony. I tried.
We had Josie's and Toby's cousins here from the U.S. recently, and since it was a special occasion, we relaxed on some of the house rules. To Toby's delight, they got to watch his favorite movie, Cars, on a weekday. One night, we all said our bedtime prayers together, with the cousins thanking God for letting us spend time together, do fun things together, and the like. When it came to Toby's turn, he said, "Thanks for letting me watch Cars... twice!"
Earlier this year, we had five house guests all at once, so three of them had to sleep in the kids' room. One night as the kids were getting ready for bed, Toby distributed stuffed toys to everyone. To the last guest he said, "Josie has her Pink Baby, I have my Blue Baby, Auntie Shelly has the toy cow, and Auntie Deb has Blue. Aunt Jin, would you like something to hug?"
I lay in bed with Josie and Toby one night at bedtime to tell them a story about a blind marathon runner I'd once met. I started with, "Once upon a time, there was a man named Henry who could run longer and faster than anybody else in the whole world..." Toby scooted right next to me and whispered into my ear, "Excuse me Mommy. Henry is a train." Indeed, Henry is the name of one of the trains in the kids' story, Thomas the Tank Engine.
Toby's drawings have become very detailed and clear lately; less like random scratches and more like actual lines and shapes drawn with purpose. One day, he ran up to show me a drawing he had done, exclaiming, "Mommy! Mommy! Look what I drawed!" When I asked him what it was, he said with breathless excitement, "I think it's a... It must be... I don't know! What do you think it is?"
Toby has a very funny speech pattern where he says something and then repeats the key words at the end in one run-on sentence, with emphasis on the verb. "Mommy, watch this, are you watching, are you?" "Mommy, do you know why I want that, do you?" "Mommy, I did it all by myself, I did!" "Mommy, Josie read the book to me, she did." I call this "Toby syntax".
Toby's teacher said she asked him what he wanted to be when he grew up and he said, "A Daddy". I thought Tony would be touched to hear that answer, so later the same day while Tony was listening, I asked Toby what he wanted to be, and he said, "I wanna be Superman and drive a car fast." I tried to prompt him, "Your teacher said you wanted to be a Daddy when you grew up." Toby stuck to his guns, "I don't wanna be a Daddy anymore. I wanna be Superman and drive a car fast." Sorry, Tony. I tried.
We had Josie's and Toby's cousins here from the U.S. recently, and since it was a special occasion, we relaxed on some of the house rules. To Toby's delight, they got to watch his favorite movie, Cars, on a weekday. One night, we all said our bedtime prayers together, with the cousins thanking God for letting us spend time together, do fun things together, and the like. When it came to Toby's turn, he said, "Thanks for letting me watch Cars... twice!"
Earlier this year, we had five house guests all at once, so three of them had to sleep in the kids' room. One night as the kids were getting ready for bed, Toby distributed stuffed toys to everyone. To the last guest he said, "Josie has her Pink Baby, I have my Blue Baby, Auntie Shelly has the toy cow, and Auntie Deb has Blue. Aunt Jin, would you like something to hug?"
I lay in bed with Josie and Toby one night at bedtime to tell them a story about a blind marathon runner I'd once met. I started with, "Once upon a time, there was a man named Henry who could run longer and faster than anybody else in the whole world..." Toby scooted right next to me and whispered into my ear, "Excuse me Mommy. Henry is a train." Indeed, Henry is the name of one of the trains in the kids' story, Thomas the Tank Engine.
Toby's drawings have become very detailed and clear lately; less like random scratches and more like actual lines and shapes drawn with purpose. One day, he ran up to show me a drawing he had done, exclaiming, "Mommy! Mommy! Look what I drawed!" When I asked him what it was, he said with breathless excitement, "I think it's a... It must be... I don't know! What do you think it is?"
Toby has a very funny speech pattern where he says something and then repeats the key words at the end in one run-on sentence, with emphasis on the verb. "Mommy, watch this, are you watching, are you?" "Mommy, do you know why I want that, do you?" "Mommy, I did it all by myself, I did!" "Mommy, Josie read the book to me, she did." I call this "Toby syntax".
Chemo Update
Tony and I just had a meeting with my oncologist to discuss what to do next about my pesky cancer that won't go away. She gave me four different options for chemo cocktails. I'll do some research on these while we wait for my feet and hands to get better. I'll probably start on the new chemo next week some time.
Thursday, August 14, 2008
A Better Life?
In response to my post, "Paradise Declined", a blog reader wrote, "I know that you live in a nice house with a lovely family but can you honestly say that there can be no improvement on that? Suppose you had taken a different direction at a crossroads earlier in life. You don't know that another decision would not have resulted in your life being even better."
I can think of many decisions that could have resulted in my life being better.
I could have decided to live the life of an ascetic and maybe, just maybe, I wouldn't have cancer now.
I could have decided not to take that teaching job in Philadelphia and gone to law school instead, like I'd planned. Then maybe I'd be a rich lawyer in New York by now and I wouldn't have to worry about my medical bills.
I could have decided not to get married or have kids. Then I'd be free to work with a non-profit group somewhere in Africa, which is what I wanted to do back in college. And then I wouldn't have to worry about making Tony a widower or Josie and Toby motherless.
But would all of these things make my life better? I don't think so. Not if Tony and the kids aren't with me.
Of course there are many things that could make my life better. Maybe I could have a nicer house, a great career, a perfect husband, perfectly well-behaved kids, fame, admiration, and riches beyond belief. But would I trade the imperfect life I have now for a glamorous, eternal life without my husband and kids? Absolutely not.
I don't want to speculate about what I could have had if I had taken a different direction earlier in my life. I'm sure we could all come up with fantasy lives that would make our real lives seem shabby, uninspired, unfulfilling. Maybe I'm shallow or unambitious, but I really don't need to have anything more than I already have - in an afterlife or even in this life. Less, yes. Less cancer would be good.
I can think of many decisions that could have resulted in my life being better.
I could have decided to live the life of an ascetic and maybe, just maybe, I wouldn't have cancer now.
I could have decided not to take that teaching job in Philadelphia and gone to law school instead, like I'd planned. Then maybe I'd be a rich lawyer in New York by now and I wouldn't have to worry about my medical bills.
I could have decided not to get married or have kids. Then I'd be free to work with a non-profit group somewhere in Africa, which is what I wanted to do back in college. And then I wouldn't have to worry about making Tony a widower or Josie and Toby motherless.
But would all of these things make my life better? I don't think so. Not if Tony and the kids aren't with me.
Of course there are many things that could make my life better. Maybe I could have a nicer house, a great career, a perfect husband, perfectly well-behaved kids, fame, admiration, and riches beyond belief. But would I trade the imperfect life I have now for a glamorous, eternal life without my husband and kids? Absolutely not.
I don't want to speculate about what I could have had if I had taken a different direction earlier in my life. I'm sure we could all come up with fantasy lives that would make our real lives seem shabby, uninspired, unfulfilling. Maybe I'm shallow or unambitious, but I really don't need to have anything more than I already have - in an afterlife or even in this life. Less, yes. Less cancer would be good.
Funny Feet Update
That last post was from yesterday, although posted this morning. Since then, my feet have gotten much better. My podiatrist friend made a special house call and says one of the toes might just be an in-grown toenail. She also said that pus doesn't necessarily mean an infection. There's septic pus, which is due to a bacterial infection, and aseptic pus, which is not an infection. Since I have no other signs of infection, these toes might just be leaking aseptic fluid as my body tries to flush out unwanted germs. Now, why couldn't the doctors and nurses tell me all that?
Wednesday, August 13, 2008
Funny Feet & Some Signs
My toes are tied. Five cracked, bleeding, weeping infected toes wrapped in puffy cocoon-like bandages versus five healthy toes. I wish the five infected toes were all on the same foot. At least then, I'd be able to hop around on the other foot. But since they're all spread out, looks like all the little piggies will have to stay home.
Graphic, nasty details coming up... skip this paragraph if you get queasy: My toes have gotten much worse since Monday when I saw my doctor. I didn't show her my toes because they were all bandaged up and I really didn't think they were so bad. Now, one big toe is filled with fluid. It's just one big sac of liquid inside and it's all puffed up. When I put my feet up, the pus on the other cracked, bleeding toes dries up and I can bandage them up. But when I put my feet down, the blood rushes into my toes, the fluid-filled big toe throbs, and the other open skin wounds drip enough liquid to flow down the length of my feet and form tiny pus puddles. Anybody else out there experience anything like this? I'd love to hear from you to compare notes.
I'm not superstitious, but if I were, here are some ominous coincidences. Last week, a friend's father died after an infection lead to heart failure and stroke. A few days ago, a friend sent around a mass e-mail about how women who experience cardiac arrest experience different symptoms than men do. Yesterday, I was watching "Grey's Anatomy" and a patient on the show died after an infection lead to heart failure. Later that same day, a friend brought over some magazines for me to read and there was an article in one of them about Christopher Reeve, who died after an infection lead to cardiac arrest. I'd already mentioned Christopher Reeve and his famous bedsore infection death in a post earlier this week.
Also, in the past few weeks, I've had a few bouts of strong pressure pain deep within the chest - on the left side, where the heart is, rather than the right side, where I had radiation. I've told my doctor about this and she doesn't seem to think it's anything to worry about. I've just had an echocardiogram and my heart function is normal. But I actually don't know if an echocardiogram can predict future heart failure due to an infection or other causes. Any heart specialists out there who can tell me? Anyone? Anyone? Bueller?
Maybe this is the universe telling me to be careful not to allow these infected toes to get out of control because if this turns into a systemic infection, I'm in trouble. Maybe not necessarily heart failure, but I won't be able to start a new chemo regimen if my body is fighting an infection.
I guess this is the sort of thing that makes people wonder what's worse - the cancer or the treatment? Today, I'd have to say it's the treatment. I don't feel the cancer right now, but I sure can feel the chemo-induced infected toes.
Graphic, nasty details coming up... skip this paragraph if you get queasy: My toes have gotten much worse since Monday when I saw my doctor. I didn't show her my toes because they were all bandaged up and I really didn't think they were so bad. Now, one big toe is filled with fluid. It's just one big sac of liquid inside and it's all puffed up. When I put my feet up, the pus on the other cracked, bleeding toes dries up and I can bandage them up. But when I put my feet down, the blood rushes into my toes, the fluid-filled big toe throbs, and the other open skin wounds drip enough liquid to flow down the length of my feet and form tiny pus puddles. Anybody else out there experience anything like this? I'd love to hear from you to compare notes.
I'm not superstitious, but if I were, here are some ominous coincidences. Last week, a friend's father died after an infection lead to heart failure and stroke. A few days ago, a friend sent around a mass e-mail about how women who experience cardiac arrest experience different symptoms than men do. Yesterday, I was watching "Grey's Anatomy" and a patient on the show died after an infection lead to heart failure. Later that same day, a friend brought over some magazines for me to read and there was an article in one of them about Christopher Reeve, who died after an infection lead to cardiac arrest. I'd already mentioned Christopher Reeve and his famous bedsore infection death in a post earlier this week.
Also, in the past few weeks, I've had a few bouts of strong pressure pain deep within the chest - on the left side, where the heart is, rather than the right side, where I had radiation. I've told my doctor about this and she doesn't seem to think it's anything to worry about. I've just had an echocardiogram and my heart function is normal. But I actually don't know if an echocardiogram can predict future heart failure due to an infection or other causes. Any heart specialists out there who can tell me? Anyone? Anyone? Bueller?
Maybe this is the universe telling me to be careful not to allow these infected toes to get out of control because if this turns into a systemic infection, I'm in trouble. Maybe not necessarily heart failure, but I won't be able to start a new chemo regimen if my body is fighting an infection.
I guess this is the sort of thing that makes people wonder what's worse - the cancer or the treatment? Today, I'd have to say it's the treatment. I don't feel the cancer right now, but I sure can feel the chemo-induced infected toes.
Tuesday, August 12, 2008
Chemo Update
I had my latest round of scans last week and went over the results with my oncologist yesterday. Her conclusion is that this chemo is no longer working and it's time to consider a new combination of chemo drugs - the ninth chemo regimen this year.
Here are my test results:
Echocardiogram: Within normal range, with little change from the last one in June - ejection fraction of 57% vs. 56% before.
Chest X-Ray: The radiologist says this latest look at the lungs "shows no significant change" from the previous one in June. He also says there is no cancer spread and the cloudy white stuff could be due to an infection. This just goes to show how tricky it is to find cancer in the lungs from just an X-ray. This radiologist didn't know that I'd already had a lung biopsy in February and we knew for sure it was cancer and not an infection that was showing up on the X-rays. My oncologist thinks my lungs show a bit of improvement.
Liver ultrasound: The report says that compared to the previous ultrasound in June, there is "an increase in both size and number of lesions". There are at least 8 lesions, or tumors, in the liver compared to 7 last time and they're bigger than before. My oncologist says these donut-like tumors are "peculiar". She thinks the slightly darker centers are due to necrosis (dead cancer cells), but she wonders why these dead cells are not being flushed out by the liver. She suggested a CT scan might show us more.
Tumor markers: They've all gone up since the last blood test on June 30.
CA-125 up to 229.0 from 125.5 (normal range is <35.0).
CEA to 7.8 from 4.6 (normal is <4.7).
CA15-3 to 45.0 from 25.9 (normal is <25.0).
My doctor's initial suggestion is to stop the Xeloda + Tykerb + Herceptin chemo combo I'm on now and switch to Avastin + Abraxane. She says she'll present my case to the "tumor board", a panel of 12 oncologists, to see what they think. For now, she has stopped my current chemo combo to give my hands and feet some time to recover from the Hand-Foot Syndrome before I start on my next chemo regimen, whatever that may be. Stay tuned...
Here are my test results:
Echocardiogram: Within normal range, with little change from the last one in June - ejection fraction of 57% vs. 56% before.
Chest X-Ray: The radiologist says this latest look at the lungs "shows no significant change" from the previous one in June. He also says there is no cancer spread and the cloudy white stuff could be due to an infection. This just goes to show how tricky it is to find cancer in the lungs from just an X-ray. This radiologist didn't know that I'd already had a lung biopsy in February and we knew for sure it was cancer and not an infection that was showing up on the X-rays. My oncologist thinks my lungs show a bit of improvement.
Liver ultrasound: The report says that compared to the previous ultrasound in June, there is "an increase in both size and number of lesions". There are at least 8 lesions, or tumors, in the liver compared to 7 last time and they're bigger than before. My oncologist says these donut-like tumors are "peculiar". She thinks the slightly darker centers are due to necrosis (dead cancer cells), but she wonders why these dead cells are not being flushed out by the liver. She suggested a CT scan might show us more.
Tumor markers: They've all gone up since the last blood test on June 30.
CA-125 up to 229.0 from 125.5 (normal range is <35.0).
CEA to 7.8 from 4.6 (normal is <4.7).
CA15-3 to 45.0 from 25.9 (normal is <25.0).
My doctor's initial suggestion is to stop the Xeloda + Tykerb + Herceptin chemo combo I'm on now and switch to Avastin + Abraxane. She says she'll present my case to the "tumor board", a panel of 12 oncologists, to see what they think. For now, she has stopped my current chemo combo to give my hands and feet some time to recover from the Hand-Foot Syndrome before I start on my next chemo regimen, whatever that may be. Stay tuned...
Monday, August 11, 2008
Taking Symptoms Seriously
I think my over-active imagination has worked in my favor throughout this cancer experience. I'd imagined the possibility of being diagnosed with a terminal illness someday so when I got the cancer diagnosis, I didn't freak out or fall into a deep depression. I'd already been there in my imagination, so when it became reality, I just had to play along.
I've read many accounts of people with cancer and the symptoms they suffer. I've read the medical literature about the side-effects of the cancer treatments. When my oncologist told me about some of her patients with Hand-Foot Syndrome whose skin just peeled right off their hands and feet, I pictured these people with open, gushing, skinned appendages who had to be hospitalized and kept in sterile bubbles.
When I read about vomiting and nausea from chemo, I imagined I'd be retching into a bucket all day and night. When I read about chemo-induced diarrhea, I imagined I'd have to be hospitalized to be rehydrated and fed by tube.
So when I started getting a few blisters and a bit of raw, cracked skin on my feet, I thought it was just overly dry skin. And when the cracked skin started bleeding and oozing pus, I thought I just had infections. When I started getting diarrhea, I thought it was just like the time I had food poisoning. When I started feeling nausea, I thought it wasn't as bad as when I had morning sickness from pregnancy.
Even back in March and April, when I went through a bad spell, I initially thought I was just a bit more tired than usual and would be able to hold my head up without pillows if I just lay down for a little nap. When I had trouble breathing, I thought it was no big deal; I'd just move a bit more slowly and not talk so much.
All of these symptoms sort of snuck up on me little by little and quietly - slowly enough that they didn't seem nearly as serious as the symptoms I'd been reading about in the medical literature or that I'd been imagining in my mind.
I recently re-read the description of Hand-Foot Syndrome in the leaflet that comes with the chemo drug I'm taking. According to that leaflet, my case is Grade 2 out of 4 and I should be alerting my doctor "immediately". I think they're a bit strict with their recommendations just in case they're held legally liable if a patient has a really bad reaction to the drug.
I guess my question is... how seriously should I take my symptoms? I really don't think I'm in any danger because I have a few infected toes. Then again, Christopher Reeve died of an infection from a bed sore.
With cancer, it's hard to find the line between overreacting and not reacting enough.
I've read many accounts of people with cancer and the symptoms they suffer. I've read the medical literature about the side-effects of the cancer treatments. When my oncologist told me about some of her patients with Hand-Foot Syndrome whose skin just peeled right off their hands and feet, I pictured these people with open, gushing, skinned appendages who had to be hospitalized and kept in sterile bubbles.
When I read about vomiting and nausea from chemo, I imagined I'd be retching into a bucket all day and night. When I read about chemo-induced diarrhea, I imagined I'd have to be hospitalized to be rehydrated and fed by tube.
So when I started getting a few blisters and a bit of raw, cracked skin on my feet, I thought it was just overly dry skin. And when the cracked skin started bleeding and oozing pus, I thought I just had infections. When I started getting diarrhea, I thought it was just like the time I had food poisoning. When I started feeling nausea, I thought it wasn't as bad as when I had morning sickness from pregnancy.
Even back in March and April, when I went through a bad spell, I initially thought I was just a bit more tired than usual and would be able to hold my head up without pillows if I just lay down for a little nap. When I had trouble breathing, I thought it was no big deal; I'd just move a bit more slowly and not talk so much.
All of these symptoms sort of snuck up on me little by little and quietly - slowly enough that they didn't seem nearly as serious as the symptoms I'd been reading about in the medical literature or that I'd been imagining in my mind.
I recently re-read the description of Hand-Foot Syndrome in the leaflet that comes with the chemo drug I'm taking. According to that leaflet, my case is Grade 2 out of 4 and I should be alerting my doctor "immediately". I think they're a bit strict with their recommendations just in case they're held legally liable if a patient has a really bad reaction to the drug.
I guess my question is... how seriously should I take my symptoms? I really don't think I'm in any danger because I have a few infected toes. Then again, Christopher Reeve died of an infection from a bed sore.
With cancer, it's hard to find the line between overreacting and not reacting enough.
Saturday, August 9, 2008
Josie Funnies Addendum
I was just eating my breakfast when Josie came up to me and said:
Josie: Mommy, why don't you believe in God?
Me: Well... I'm just not sure he's real. I just don't know.
PAUSE
Me: Do you believe in God?
Josie: Yes.
Me: I think that's great. You're very lucky.
Josie: I think he's here with us but he's invisible. I think he's right in front of us wherever we go.
PAUSE (I was a bit stunned.)
Josie: I'm going to my room now to have a rest.
End of conversation.
Josie: Mommy, why don't you believe in God?
Me: Well... I'm just not sure he's real. I just don't know.
PAUSE
Me: Do you believe in God?
Josie: Yes.
Me: I think that's great. You're very lucky.
Josie: I think he's here with us but he's invisible. I think he's right in front of us wherever we go.
PAUSE (I was a bit stunned.)
Josie: I'm going to my room now to have a rest.
End of conversation.
Friday, August 8, 2008
Josie Funnies
A number of you have told me that your favorite posts on this blog have been the ones about my kids, for example, Night-time Thoughts. So I've collected a few funny stories about Josie and Toby from the past several months. Here are some stories about Josie. Next Friday, I'll post stories about Toby.
One night, I was hugging Josie as we were saying good night. I buried my face in her neck and hair and squeezed her tight and smelled her smell for a long time. After several minutes she said, "Mommy, you should come up for air."
I haven't been able to swim laps since February, when the cancer in my lungs started to make breathing difficult. Lately, I've been feeling back to normal, so I got in the pool with Josie. I challenged her to a race across the pool and I told her, "I know you're a good swimmer now, so I'm not going to let you win on purpose!" And off we went. Much to my dismay, I wasn't as back to normal as I'd thought, and I was struggling to keep up with my five-year-old daughter! But just before we got to the finish, Josie suddenly slowed down and I reached the other side of the pool first. She shouted out, "You WON, Mommy! Good job!" She was beaming with pride because she had let me win.
Earlier this year, when we were trying to raise money for a boy with cancer, Josie overheard me telling someone about my friend's daughter who offered her piggy bank to help the boy. Josie heard me say how impressed and touched I was by this little girl's gesture. Then Josie offered, "Mommy, if you give me a hundred dollars, I'll give it to the boy."
We were at the beach and showing the kids how to hold a seashell to their ears to hear the ocean. Josie was impressed. I was about to tell her that it wasn't really the ocean she was hearing, but I stopped myself and asked, "Josie, do you want to think it's magic, or do you want to know the truth?" She wanted to know the truth so I told her. She was as fascinated as she was when she thought it was magic.
I once told Josie that she had a wonderful imagination. I said, "I hope you never lose your imagination, because as kids grow up into adults, they tend to lose their imaginations." The very next day, Josie came running into the house from the terrace, where the kids had been playing with Play-Doh (and mixing all the colors until there was just one big blob of brown dough). Her eyes were big and sparkly and she was hopping from excitement as she announced, "Mommy! Daddy still has his imagination! He just said the Play-Doh looked like poop!"
Josie was saying her bedtime prayer one night and she ended it with "Please bless..." followed by a list of each member of our family, our extended family, her friends, her friends' families, our family's friends, and so on for several minutes without pause. She finally ran out of breath and ended with, "And everybody else in the whole world." The next night, she went straight for the shortcut and simply said, "Please bless everybody in the whole world." Then she added, "Especially the poor people and the bad people." I don't know why she included bad people. She's more generous of heart than I am, I guess.
Hope you enjoyed these stories. Have a great weekend!
One night, I was hugging Josie as we were saying good night. I buried my face in her neck and hair and squeezed her tight and smelled her smell for a long time. After several minutes she said, "Mommy, you should come up for air."
I haven't been able to swim laps since February, when the cancer in my lungs started to make breathing difficult. Lately, I've been feeling back to normal, so I got in the pool with Josie. I challenged her to a race across the pool and I told her, "I know you're a good swimmer now, so I'm not going to let you win on purpose!" And off we went. Much to my dismay, I wasn't as back to normal as I'd thought, and I was struggling to keep up with my five-year-old daughter! But just before we got to the finish, Josie suddenly slowed down and I reached the other side of the pool first. She shouted out, "You WON, Mommy! Good job!" She was beaming with pride because she had let me win.
Earlier this year, when we were trying to raise money for a boy with cancer, Josie overheard me telling someone about my friend's daughter who offered her piggy bank to help the boy. Josie heard me say how impressed and touched I was by this little girl's gesture. Then Josie offered, "Mommy, if you give me a hundred dollars, I'll give it to the boy."
We were at the beach and showing the kids how to hold a seashell to their ears to hear the ocean. Josie was impressed. I was about to tell her that it wasn't really the ocean she was hearing, but I stopped myself and asked, "Josie, do you want to think it's magic, or do you want to know the truth?" She wanted to know the truth so I told her. She was as fascinated as she was when she thought it was magic.
I once told Josie that she had a wonderful imagination. I said, "I hope you never lose your imagination, because as kids grow up into adults, they tend to lose their imaginations." The very next day, Josie came running into the house from the terrace, where the kids had been playing with Play-Doh (and mixing all the colors until there was just one big blob of brown dough). Her eyes were big and sparkly and she was hopping from excitement as she announced, "Mommy! Daddy still has his imagination! He just said the Play-Doh looked like poop!"
Josie was saying her bedtime prayer one night and she ended it with "Please bless..." followed by a list of each member of our family, our extended family, her friends, her friends' families, our family's friends, and so on for several minutes without pause. She finally ran out of breath and ended with, "And everybody else in the whole world." The next night, she went straight for the shortcut and simply said, "Please bless everybody in the whole world." Then she added, "Especially the poor people and the bad people." I don't know why she included bad people. She's more generous of heart than I am, I guess.
Hope you enjoyed these stories. Have a great weekend!
Thursday, August 7, 2008
Seeking Advice & Experience
I've been reading other people's cancer stories and it has occurred to me that I'm not doing everything I can with medical treatment. There may be some procedures out there I should be pursuing.
I've been relying on my oncologist to monitor my tumors. We've been focusing on the cancer in my lungs and liver. I haven't been showing any symptoms from the tumors in my brain and bones, so we're not dealing with those yet. We assume the chemotherapy is hitting everything, so if the tumors in the lungs and liver look like they've stabilized, then maybe the same for the ones in the brain and bones. I don't know if that's the right approach.
I've been reading about some surgical procedures for getting rid of tumors in the liver and I wonder if I'm a candidate for such operations. My oncologist wouldn't be able to advise on surgery because she's a medical oncologist. What I need is a surgical oncologist. One of my doctors (a surgeon) told me that there is no surgical oncology field in Singapore. The surgeons who work on cancer patients in this country are just general surgeons rather than specialists with training in oncology.
I wonder if I should go to one of the big cancer centers in the U.S. to get a thorough look at my treatment from a complete team of specialists - medical (chemo), surgical, and radiation oncology. I've read too many stories about patients who finally find their way to the best treatment for them, only to find that it's too late.
One woman I read about was told by her oncologist that she wasn't a candidate for surgery for the tumors in her liver. Two months later, she found a surgeon who would do the surgery but by then, the tumors had grown so big that the surgery wasn't able to get all of them. She had four tumors in her liver; I have seven. That lady's cancer then spread to her lungs and she died two months later. I've had cancer in my lungs since last August - about a year now.
I keep reading and hearing about other patients who died just months after spread to the liver or lungs and I wonder why I'm still alive. I'm on the eighth chemo regimen so far this year, after the first seven either stopped working or caused side-effects that made it unsafe to continue. This current one seems to be working, but like all drugs at this stage of cancer, it can stop working any day now.
Since I've been feeling so great lately, I haven't been looking into other treatments. Maybe I should. Does anybody out there have any experience with or advice about other medical treatments or procedures I should be considering for the cancer in my liver, lungs, brain, and bones? If you have advice about herbal supplements or anything like that, no thanks. I'm already doing a lot in that area. Now, I'm wondering about medical procedures. Thanks.
I've been relying on my oncologist to monitor my tumors. We've been focusing on the cancer in my lungs and liver. I haven't been showing any symptoms from the tumors in my brain and bones, so we're not dealing with those yet. We assume the chemotherapy is hitting everything, so if the tumors in the lungs and liver look like they've stabilized, then maybe the same for the ones in the brain and bones. I don't know if that's the right approach.
I've been reading about some surgical procedures for getting rid of tumors in the liver and I wonder if I'm a candidate for such operations. My oncologist wouldn't be able to advise on surgery because she's a medical oncologist. What I need is a surgical oncologist. One of my doctors (a surgeon) told me that there is no surgical oncology field in Singapore. The surgeons who work on cancer patients in this country are just general surgeons rather than specialists with training in oncology.
I wonder if I should go to one of the big cancer centers in the U.S. to get a thorough look at my treatment from a complete team of specialists - medical (chemo), surgical, and radiation oncology. I've read too many stories about patients who finally find their way to the best treatment for them, only to find that it's too late.
One woman I read about was told by her oncologist that she wasn't a candidate for surgery for the tumors in her liver. Two months later, she found a surgeon who would do the surgery but by then, the tumors had grown so big that the surgery wasn't able to get all of them. She had four tumors in her liver; I have seven. That lady's cancer then spread to her lungs and she died two months later. I've had cancer in my lungs since last August - about a year now.
I keep reading and hearing about other patients who died just months after spread to the liver or lungs and I wonder why I'm still alive. I'm on the eighth chemo regimen so far this year, after the first seven either stopped working or caused side-effects that made it unsafe to continue. This current one seems to be working, but like all drugs at this stage of cancer, it can stop working any day now.
Since I've been feeling so great lately, I haven't been looking into other treatments. Maybe I should. Does anybody out there have any experience with or advice about other medical treatments or procedures I should be considering for the cancer in my liver, lungs, brain, and bones? If you have advice about herbal supplements or anything like that, no thanks. I'm already doing a lot in that area. Now, I'm wondering about medical procedures. Thanks.
Wednesday, August 6, 2008
Hand-Foot Syndrome
I'm not too keen on detailing my symptoms on a daily basis for a number of reasons, the main one being that it feels too much like whining and complaining. I don't think people want to read a blog about every little pain and discomfort that I'm feeling. But Tony pointed out that most of the people reading this blog are cancer patients or survivors themselves or have loved ones who are, and they could learn something from my symptoms, just as I have from reading other people's cancer blogs.
So here's a little update about this weird side-effect of chemo called Hand-Foot Syndrome.
This latest chemo combination has caused my hands and feet to become raw, tender, and very sensitive. The medical advice is to avoid heat and friction, so no socks and no closed shoes, only sandals. Luckily, I live in the tropics, so I only wear open shoes anyway. The problem is, I keep getting stepped on. Somebody stepped on my little toe with hard heels a few days ago and I ended up with a big blood blister. And I'm getting blisters where my sandal straps touch my feet.
I don't want to pop the blisters lest I get an infection. But since I can't walk at all with the blisters on my feet, I've been popping the blisters and wrapping up the toes in gobs of antibiotic cream. I'm also seeing spontaneous bleeding and oozing pus at the skin creases on the soles of my feet and at the edges of my toenails. I now have four bloody, pus-oozing toes wrapped up in bandages so I can only hobble around on my heels.
I've already been on oral antibiotics twice in the past month due to infections on my feet. I don't want to add any more drugs to my already drug-saturated body, so I'm trying to treat these infections now with topical cream and bandages.
When my oncologist saw my feet several weeks ago, she suggested we decrease the dose of the chemo drug. I refused. I'm not going to let a little discomfort and inconvenience compromise my treatment. I can deal with silly toes and a funny walk. I can't deal with my tumors starting to grow again because we decrease or stop the chemo. Well, I can, but I don't want to.
Another reason to stay away from more oral antibiotics is that they add to yet another side-effect of the chemo - diarrhea. This is not a serious, life-threatening side-effect for me at the moment, but it's rather embarrassing and inconvenient. There are some days when I just can't leave the house. I've heard of patients having to wear adult diapers because of this. I haven't had to resort to that yet, but boy, I can see how this disease and its accompanying side-effects can really strip people of their dignity.
What a pleasant post this has been! Blisters, blood, pus, and diarrhea. Have a nice day!
So here's a little update about this weird side-effect of chemo called Hand-Foot Syndrome.
This latest chemo combination has caused my hands and feet to become raw, tender, and very sensitive. The medical advice is to avoid heat and friction, so no socks and no closed shoes, only sandals. Luckily, I live in the tropics, so I only wear open shoes anyway. The problem is, I keep getting stepped on. Somebody stepped on my little toe with hard heels a few days ago and I ended up with a big blood blister. And I'm getting blisters where my sandal straps touch my feet.
I don't want to pop the blisters lest I get an infection. But since I can't walk at all with the blisters on my feet, I've been popping the blisters and wrapping up the toes in gobs of antibiotic cream. I'm also seeing spontaneous bleeding and oozing pus at the skin creases on the soles of my feet and at the edges of my toenails. I now have four bloody, pus-oozing toes wrapped up in bandages so I can only hobble around on my heels.
I've already been on oral antibiotics twice in the past month due to infections on my feet. I don't want to add any more drugs to my already drug-saturated body, so I'm trying to treat these infections now with topical cream and bandages.
When my oncologist saw my feet several weeks ago, she suggested we decrease the dose of the chemo drug. I refused. I'm not going to let a little discomfort and inconvenience compromise my treatment. I can deal with silly toes and a funny walk. I can't deal with my tumors starting to grow again because we decrease or stop the chemo. Well, I can, but I don't want to.
Another reason to stay away from more oral antibiotics is that they add to yet another side-effect of the chemo - diarrhea. This is not a serious, life-threatening side-effect for me at the moment, but it's rather embarrassing and inconvenient. There are some days when I just can't leave the house. I've heard of patients having to wear adult diapers because of this. I haven't had to resort to that yet, but boy, I can see how this disease and its accompanying side-effects can really strip people of their dignity.
What a pleasant post this has been! Blisters, blood, pus, and diarrhea. Have a nice day!
Tuesday, August 5, 2008
Proof of Love II
Tony's not much of a talker. He doesn't say "I love you" very often or tell me how wonderful or beautiful I am. He doesn't buy me flowers or heart-shaped boxes of chocolates on Valentine's Day. He doesn't whisk me away to romantic holidays. He doesn't write me love letters or buy me expensive gifts. He doesn't even hold me when we fall asleep at night (too hot and uncomfortable).
I don't do the flowers, chocolates, and love letters either. We've both forgotten each other's birthdays, Mother's Day, Father's Day, even our wedding anniversary. I know some women cry when their husbands forget their wedding anniversaries and accuse their husbands of not loving them. I think that's a bit silly.
So how do I know Tony loves me? And how do I show him that I love him? Hundreds of little things, day-to-day. Each little act with insignificant meaning on its own, but when strung together show undeniably that they come from love.
When I don't like the dinner I order in a restaurant, he offers to trade with me, even though he really likes the one he ordered. And I refuse, even though I really hate my dinner and want his instead. When there's only one cookie left, he lies and tells me he doesn't want it so I can have it. I lie right back and tell him I'm so stuffed I couldn't possibly eat another cookie.
I do something mean or stupid, but instead of berating me for my mistake, he reassures me that it wasn't so bad so that I won't hate myself for it. I know he's lying and I love him for it.
He ignores my advice and does something that costs us time, money, or agony - agony we could have avoided if only he'd listened to me. I'm very, very frustrated. But instead of making him feel bad with remonstrations, I try to make light of it or help him fix it. If you know me, you know this is something that's very hard for me to do and I don't always succeed at it. But when I come upon a situation like this with Tony, I try to tell myself that I love him more than any satisfaction I'd get from venting my frustration.
He used to work at a really high-stress job in a very unpleasant environment. He went off to work each day because he wanted to provide us with a comfortable life, and he never complained about the stresses of work because he didn't want to worry me. As he left for work each morning, I thanked him for working so hard for me and the kids and told him I was proud of him. I told him so in front of the kids so they could hear it too. Soon, Josie was thanking him as well.
I think different people demonstrate and need demonstrations of love in different ways. For some people, it's the things you buy them, or the time you spend with them, or the things you do for them, or the things you say to them. For me, it's the silly little things that might go unnoticed. Things that I do notice, because I love him back.
How do you show your love? And how do you like your loved ones to show their love to you?
I don't do the flowers, chocolates, and love letters either. We've both forgotten each other's birthdays, Mother's Day, Father's Day, even our wedding anniversary. I know some women cry when their husbands forget their wedding anniversaries and accuse their husbands of not loving them. I think that's a bit silly.
So how do I know Tony loves me? And how do I show him that I love him? Hundreds of little things, day-to-day. Each little act with insignificant meaning on its own, but when strung together show undeniably that they come from love.
When I don't like the dinner I order in a restaurant, he offers to trade with me, even though he really likes the one he ordered. And I refuse, even though I really hate my dinner and want his instead. When there's only one cookie left, he lies and tells me he doesn't want it so I can have it. I lie right back and tell him I'm so stuffed I couldn't possibly eat another cookie.
I do something mean or stupid, but instead of berating me for my mistake, he reassures me that it wasn't so bad so that I won't hate myself for it. I know he's lying and I love him for it.
He ignores my advice and does something that costs us time, money, or agony - agony we could have avoided if only he'd listened to me. I'm very, very frustrated. But instead of making him feel bad with remonstrations, I try to make light of it or help him fix it. If you know me, you know this is something that's very hard for me to do and I don't always succeed at it. But when I come upon a situation like this with Tony, I try to tell myself that I love him more than any satisfaction I'd get from venting my frustration.
He used to work at a really high-stress job in a very unpleasant environment. He went off to work each day because he wanted to provide us with a comfortable life, and he never complained about the stresses of work because he didn't want to worry me. As he left for work each morning, I thanked him for working so hard for me and the kids and told him I was proud of him. I told him so in front of the kids so they could hear it too. Soon, Josie was thanking him as well.
I think different people demonstrate and need demonstrations of love in different ways. For some people, it's the things you buy them, or the time you spend with them, or the things you do for them, or the things you say to them. For me, it's the silly little things that might go unnoticed. Things that I do notice, because I love him back.
How do you show your love? And how do you like your loved ones to show their love to you?
Monday, August 4, 2008
Proof of Love
Of course you can't actually prove love, but how do you show love?
I once saw a woman having lunch with her five-year-old son. It was the most visible demonstration of a mother's love for her child I'd ever seen. It wasn't just the way she gingerly placed each dumpling on her spoon, gently blowing on it to cool it down before putting it on her son's plate. It wasn't just the way she filled his bowl with rice after he finished each serving before she took any for herself.
What really looked like love was the way she made eye contact with him and listened to him. Unlike many parents, including me, she didn't just say, "Eat this, eat that, do you want more of this, is that yummy?" She was chatting with him and listening, really listening to his stories. She stopped her spoonful mid-way to her mouth to look straight into his eyes, smile at him, and respond to what he was telling her.
I don't think I've ever seen a parent treat such a young child with so much love, admiration, and respect. I wished I could tell that boy, "If you ever grow up to think that your mother doesn't love you enough, remember this scene."
I wonder... when my kids look back at memories of me, what will they see as proof of how much I loved them?
Will it be little things like the way I tuck them in at night and bury my face in their necks to whisper "I love you" to them? Will it be the way I cut up their food into shapes that they'll like? Or maybe the sweet treats I sneak to them even though they didn't finish their dinner?
Will it be big picture things like my insistence that they learn to treat people with respect and kindness so they can grow up to become pleasant, decent adults? Will it be the lectures I give them about taking care of their health and their environment? Or maybe the things I'm doing to fight cancer so I can stay alive for them?
What do you remember from your childhood that made you feel your parents loved you? What did your mother and father say and do that you hold as demonstrations of your parents' love?
What do you do day-to-day to show your love to your children? What evidence, big and small, will they see later on as proof of how much you loved them?
I once saw a woman having lunch with her five-year-old son. It was the most visible demonstration of a mother's love for her child I'd ever seen. It wasn't just the way she gingerly placed each dumpling on her spoon, gently blowing on it to cool it down before putting it on her son's plate. It wasn't just the way she filled his bowl with rice after he finished each serving before she took any for herself.
What really looked like love was the way she made eye contact with him and listened to him. Unlike many parents, including me, she didn't just say, "Eat this, eat that, do you want more of this, is that yummy?" She was chatting with him and listening, really listening to his stories. She stopped her spoonful mid-way to her mouth to look straight into his eyes, smile at him, and respond to what he was telling her.
I don't think I've ever seen a parent treat such a young child with so much love, admiration, and respect. I wished I could tell that boy, "If you ever grow up to think that your mother doesn't love you enough, remember this scene."
I wonder... when my kids look back at memories of me, what will they see as proof of how much I loved them?
Will it be little things like the way I tuck them in at night and bury my face in their necks to whisper "I love you" to them? Will it be the way I cut up their food into shapes that they'll like? Or maybe the sweet treats I sneak to them even though they didn't finish their dinner?
Will it be big picture things like my insistence that they learn to treat people with respect and kindness so they can grow up to become pleasant, decent adults? Will it be the lectures I give them about taking care of their health and their environment? Or maybe the things I'm doing to fight cancer so I can stay alive for them?
What do you remember from your childhood that made you feel your parents loved you? What did your mother and father say and do that you hold as demonstrations of your parents' love?
What do you do day-to-day to show your love to your children? What evidence, big and small, will they see later on as proof of how much you loved them?
Friday, August 1, 2008
Last Lecture
Many of you have probably heard of Randy Pausch, an American professor and father of three who had pancreatic cancer. He became famous via the Internet for his "Last Lecture" video. I posted a short version of his lecture from The Oprah Winfrey Show on my blog post, "Cancer as Opportunity" in February.
He died last week.
I wish I'd had a professor like him when I was in college. I might have skipped fewer classes and actually learned something.
As a fellow parent and cancer patient with a similar prognosis, I'm extremely impressed and sad. He seems like a funny, smart, caring guy who's human enough to make mistakes and humble enough to laugh about them.
I keep thinking about his three kids, ages 2, 4, and 6. This last lecture video and the best-selling book based on the lecture, are a great legacy that he's leaving behind for his kids. But I can't help thinking that if I were his daughter, I'd watch the video and read his book and the volumes of articles written about him with pride, and still wish that I could exchange my father's famous legacy for just one hour of being with him in person.
I found a video of his original lecture on You Tube, which you can see by clicking HERE. It's an hour and 16 minutes long and gets a bit too much into his academic work, but I think it's worth watching. He may not say anything new or earth-shattering, but I think he's a great speaker - articulate, engaging, and funny.
It's not what he says that impresses me so much, but who he is - a father of three young kids who wants to be there for them even after he's gone, a guy who gets an auditorium full of people to sing to his wife, a man with a highly respected position in academia who still goes around waving his arms in excitement and gets a twinkle in his eyes talking about what his students are learning, a professor who can't stop talking about his colleagues and bosses and how much he admires them, a dying man who can still enjoy his life and crack jokes about his deathbed conversion, a man facing death who can do it with dignity and humor and without God or religion. He's a hero I could sit and have a beer with.
Here are some things from his lecture that made an impression on me, that I'd like to pass on to my own kids:
1) Be good at something. It makes you valuable.
2) Don't let people think you're arrogant. It will limit what you can achieve.
3) See obstacles as a test to see just how badly you want something.
4) If you're a talented salesperson, sell something meaningful like education, diplomacy, justice.
5) Enabling the dreams of others is as good as making your own dreams come true.
Enjoy the video. You have all weekend to watch it and all the rest of your life to think about what this guy has left behind for the rest of us.
He died last week.
I wish I'd had a professor like him when I was in college. I might have skipped fewer classes and actually learned something.
As a fellow parent and cancer patient with a similar prognosis, I'm extremely impressed and sad. He seems like a funny, smart, caring guy who's human enough to make mistakes and humble enough to laugh about them.
I keep thinking about his three kids, ages 2, 4, and 6. This last lecture video and the best-selling book based on the lecture, are a great legacy that he's leaving behind for his kids. But I can't help thinking that if I were his daughter, I'd watch the video and read his book and the volumes of articles written about him with pride, and still wish that I could exchange my father's famous legacy for just one hour of being with him in person.
I found a video of his original lecture on You Tube, which you can see by clicking HERE. It's an hour and 16 minutes long and gets a bit too much into his academic work, but I think it's worth watching. He may not say anything new or earth-shattering, but I think he's a great speaker - articulate, engaging, and funny.
It's not what he says that impresses me so much, but who he is - a father of three young kids who wants to be there for them even after he's gone, a guy who gets an auditorium full of people to sing to his wife, a man with a highly respected position in academia who still goes around waving his arms in excitement and gets a twinkle in his eyes talking about what his students are learning, a professor who can't stop talking about his colleagues and bosses and how much he admires them, a dying man who can still enjoy his life and crack jokes about his deathbed conversion, a man facing death who can do it with dignity and humor and without God or religion. He's a hero I could sit and have a beer with.
Here are some things from his lecture that made an impression on me, that I'd like to pass on to my own kids:
1) Be good at something. It makes you valuable.
2) Don't let people think you're arrogant. It will limit what you can achieve.
3) See obstacles as a test to see just how badly you want something.
4) If you're a talented salesperson, sell something meaningful like education, diplomacy, justice.
5) Enabling the dreams of others is as good as making your own dreams come true.
Enjoy the video. You have all weekend to watch it and all the rest of your life to think about what this guy has left behind for the rest of us.
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