The palliative care doctor who's taken over my case while my regular oncologist is away came to our house today. She came to examine me and talk about the liver ultrasound result.
She said the scan showed the largest tumor from the previous scan has grown from 3.8 to more than 4 cm, but she couldn't tell me anything about whether the number of lesions has increased or by how much. She also said the fluid in my lungs has increased. I'm not sure how they could tell that from a liver ultrasound, but there it is. These are just preliminary results so we might get more details later.
Meanwhile, the doctor suspects that although it's the liver causing most of my problems, I also have an inflamed gall bladder that may be exacerbating the pain and nausea. So I'm going to have the gall bladder removed.
But because I've lost so much weight lately, the surgeon is afraid I may not be strong enough to withstand the surgery, so they've now put me on a course of antibiotics to help the inflamed gall bladder settle so I can eat and put on some weight before I get the surgery. So I guess I'm like the Christmas turkey - they're fattening me up before they cut me open.
I'm just happy we finally have a course of action. There's nothing worse than sitting around in limbo, waiting to feel better without being able to do anything to actually make that happen. So that's the plan for now.
Monday, December 29, 2008
Sunday, December 28, 2008
A Simple Gift
I haven't posted anything for the past week because the pain and nausea have been so bad that I haven't been able to do much. We've spent the past five days playing around with different combinations and permutations of pain and nausea medication, but we just can't seem to get it right. I've started losing weight again because the mere thought of eating makes me queasy, and this is worrying me since I have to keep my body strong enough for chemo.
I finally decided a few days ago to get a liver ultrasound, even though my regular oncologist isn't back yet from her holiday break. I'll call in tomorrow to see what the results show. I had a quick peek at the monitor as the technician was scanning my liver and it looked like Swiss cheese to me. But I'll try to hold off on any conclusions, especially those involving food-related similes, until I see the actual report.
The long-term plan will be to find another chemo combination that will work if this one's not doing the job. The immediate plan is to find a way to stop this pain and nausea so I can have a quality of life worth preserving with the chemo in the first place.
It's easy enough to tell people to be strong and persist. Maybe on a short-term basis, physical pain can be overcome. But when the pain and discomfort are constant so that you can't think about anything else, they really take life away from you. I've given birth twice. I'd rather do that all over again than deal with this. Yes, even without the epidural.
The worst of it all is the effect on the family. I haven't been able to play with my kids or their cousins who are visiting from the U.S. I haven't been able to help Tony with things around the house to keep his family happy. On Christmas day, it was all I could do to sit up straight without falling over as the kids opened their gifts.
By the way, those of you who gave us gifts, could you please let me know what you gave? Normally, I'd write down who each gift came from so we can say thank-you. But I wasn't able to do that and now we have a houseful of very generous gifts and I have no idea whom to thank for them. Not only that, we still have a bagful of gifts that we have to hand out to the neighborhood kids that I haven't been able to organize. Poor Tony has enough to deal with these days. So if your kids haven't received their gifts from us yet, please come by and we can give them to you.
I'm sorry I don't have anything very cheerful or festive to say. How's this... Lucky for you, you have your health and your family to enjoy it with. Don't underestimate the value of something as simple as being pain-free. Relish that you can eat, that you can pick up and hug your kids, that you can make your spouse smile instead of look sad, that you can walk and talk without running out of breath. There are so many delicious things in life that you still have that I see I'm losing now (only temporarily, I hope!). Play that out-of-body game and be me for a few minutes. Then go back to being you. Aah. No pain... That must feel good. There's my gift to you this holiday season. Merry Christmas!
I finally decided a few days ago to get a liver ultrasound, even though my regular oncologist isn't back yet from her holiday break. I'll call in tomorrow to see what the results show. I had a quick peek at the monitor as the technician was scanning my liver and it looked like Swiss cheese to me. But I'll try to hold off on any conclusions, especially those involving food-related similes, until I see the actual report.
The long-term plan will be to find another chemo combination that will work if this one's not doing the job. The immediate plan is to find a way to stop this pain and nausea so I can have a quality of life worth preserving with the chemo in the first place.
It's easy enough to tell people to be strong and persist. Maybe on a short-term basis, physical pain can be overcome. But when the pain and discomfort are constant so that you can't think about anything else, they really take life away from you. I've given birth twice. I'd rather do that all over again than deal with this. Yes, even without the epidural.
The worst of it all is the effect on the family. I haven't been able to play with my kids or their cousins who are visiting from the U.S. I haven't been able to help Tony with things around the house to keep his family happy. On Christmas day, it was all I could do to sit up straight without falling over as the kids opened their gifts.
By the way, those of you who gave us gifts, could you please let me know what you gave? Normally, I'd write down who each gift came from so we can say thank-you. But I wasn't able to do that and now we have a houseful of very generous gifts and I have no idea whom to thank for them. Not only that, we still have a bagful of gifts that we have to hand out to the neighborhood kids that I haven't been able to organize. Poor Tony has enough to deal with these days. So if your kids haven't received their gifts from us yet, please come by and we can give them to you.
I'm sorry I don't have anything very cheerful or festive to say. How's this... Lucky for you, you have your health and your family to enjoy it with. Don't underestimate the value of something as simple as being pain-free. Relish that you can eat, that you can pick up and hug your kids, that you can make your spouse smile instead of look sad, that you can walk and talk without running out of breath. There are so many delicious things in life that you still have that I see I'm losing now (only temporarily, I hope!). Play that out-of-body game and be me for a few minutes. Then go back to being you. Aah. No pain... That must feel good. There's my gift to you this holiday season. Merry Christmas!
Friday, December 26, 2008
Rhetorical To Real
"How many times do I have to ask you? What did I just say? Did you hear me? What did you do that for? What were you thinking?"
These are rhetorical questions parents ask when their kids do something wrong. We never expect an answer; in fact, we don't even give them a chance to answer. I've realized this and decided I'm going to change that.
Toby's still too young, but with Josie, I can have a discussion launched from these questions and really give her a chance to respond.
A while ago, she was jumping on my bed so I asked her to stop. She kept doing it. I said, "Josie, I just asked you to stop jumping on the bed. Why did you keep doing it?" And then I made eye contact with her and waited for an answer. When she saw that I was actually asking for an answer and not just throwing those questions out to scold her, she really thought about it and explained herself to me.
She got a chance to reflect on and explain her behavior and I got a little look into her mind and reasoning process. Win-win situation. Not only that, she doesn't always ignore those types of rhetorical questions from me anymore; she actually stops sometimes to think about what I asked and tries to answer.
This is a pretty mature thinking process, this type of self-reflection. If we, as adults, asked ourselves similar questions about our own behavior and choices, we might be stumped. Why did I just have that drink when I know I've already had too many? Why did I do that? Why did I agree to go out with that guy when I know he's no good for me? What was I thinking? Why am I taking this job when I know it's going to make me miserable? How many times have I made this mistake before?
If we forced ourselves to stop, really reflect upon, and answer these questions, we might come up with some helpful answers, just as our kids can if we give them a chance to respond instead of throwing out empty, meaningless questions at them.
These are rhetorical questions parents ask when their kids do something wrong. We never expect an answer; in fact, we don't even give them a chance to answer. I've realized this and decided I'm going to change that.
Toby's still too young, but with Josie, I can have a discussion launched from these questions and really give her a chance to respond.
A while ago, she was jumping on my bed so I asked her to stop. She kept doing it. I said, "Josie, I just asked you to stop jumping on the bed. Why did you keep doing it?" And then I made eye contact with her and waited for an answer. When she saw that I was actually asking for an answer and not just throwing those questions out to scold her, she really thought about it and explained herself to me.
She got a chance to reflect on and explain her behavior and I got a little look into her mind and reasoning process. Win-win situation. Not only that, she doesn't always ignore those types of rhetorical questions from me anymore; she actually stops sometimes to think about what I asked and tries to answer.
This is a pretty mature thinking process, this type of self-reflection. If we, as adults, asked ourselves similar questions about our own behavior and choices, we might be stumped. Why did I just have that drink when I know I've already had too many? Why did I do that? Why did I agree to go out with that guy when I know he's no good for me? What was I thinking? Why am I taking this job when I know it's going to make me miserable? How many times have I made this mistake before?
If we forced ourselves to stop, really reflect upon, and answer these questions, we might come up with some helpful answers, just as our kids can if we give them a chance to respond instead of throwing out empty, meaningless questions at them.
Wednesday, December 24, 2008
Meet Me In Heaven
One of my favorite songs is by Pearl Jam, with these lines:
"Oh where oh where could my baby be
The lord took her away from me
She's gone to heaven so I've got to be good
So I can see my baby when I leave this world."
Toby likes to sing this song - very cute coming from a three-year-old. What a hip pre-schooler!
It's a nice thought that you try to be a good person so you can go to heaven when you die and be with a loved one who was taken from you. Of course, the kids could grow up to think that maybe their mother isn't in heaven but elsewhere, in which case they could use that excuse to do wicked things so they can see me in "that other place" after they die...
To hear the song, click HERE.
"Oh where oh where could my baby be
The lord took her away from me
She's gone to heaven so I've got to be good
So I can see my baby when I leave this world."
Toby likes to sing this song - very cute coming from a three-year-old. What a hip pre-schooler!
It's a nice thought that you try to be a good person so you can go to heaven when you die and be with a loved one who was taken from you. Of course, the kids could grow up to think that maybe their mother isn't in heaven but elsewhere, in which case they could use that excuse to do wicked things so they can see me in "that other place" after they die...
To hear the song, click HERE.
Tuesday, December 23, 2008
Coal In My Stocking
For the past week or so, I've had more nausea and stomach pain than usual, but I thought they were just side-effects of the drugs I'm on or the cancer cells taking nibbles at me. I went to see the doctor today to get a post-chemo blood count (counts all good - yay!) and asked about my symptoms while I was there. I asked if the pain and nausea might be due to ulcers caused by the steroids I've been on since August - a long time to be on steroids. I suggested we do an endoscopy to find out.
She said that if an endoscopy showed I had ulcers, the treatment would be Nexium, Zantac, and Maxolon - drugs that I'd already been taking, which didn't work. There was a chance that it was a different kind of ulcer caused by the Helicobacter pylori bacterium, and if that were the case, the treatment would be two antibiotics and a "proton pump inhibitor", a type of drug that reduces gastric acid production in the stomach.
An endoscopy costs S$300-400 (US$200-275). I didn't want to spend that kind of money.
Then the doctor did a physical examination to locate exactly where the stomach pains were. Luckily, I'm a grown-up and can be a bit more precise than "I have a tummy ache." As she tapped away and asked for my responses, she started shaking her head. Her conclusion? It's not an ulcer at all. It's my liver. My biggest worry.
Liver failure, apparently, is the most painful way to die. If you die of lung failure, there's still a chance you can expire with grace and dignity, like in the movies. Deep breath, gentle closing of eyes, quotable sentimental words, then fade out to black. But with liver failure, there's groaning and moaning, agony and excruciating pain. So unladylike! Not to mention the trauma and stress on the family.
So here's our situation at the moment. My liver's not doing so well. I'll have my liver scanned with an ultrasound when my regular oncologist returns from her vacation.
Meanwhile, the only thing we can do is treat the symptoms. We've now upped the anti-nausea ante to Motilium, and if that's not enough, I have Kytril as a back-up, but these tiny pills are S$30 (US$21) per pill! Now that hurts! For pain, I've now moved on to morphine from the codeine-paracetamol combo I was on. Let's see if these drug changes make any difference. I used to be so adverse to taking pills for any reason. Now, they're my main source of food.
Today, I actually ingested more pills than food. No kidding. Food tally: about four noodles (not bowlfuls, but actual strands of noodles) with two small squares of cabbage in a clear broth, one bite of pizza crust, and two digestive biscuits. Pill tally: more than 20 pills for seizures, pain, nausea, breathing problems, hand-foot syndrome, protein support.
A friend of mine got laid off last week and I told him the timing really stank. Who would fire somebody just before Christmas? He said, "Well, it could be worse. I could have cancer." Now here I am with some lousy news. Well, it could be worse. I could lose my sense of humor and think my friend's comment wasn't funny. Now that would be truly tragic. But he made me laugh. Hey, I can still laugh.
She said that if an endoscopy showed I had ulcers, the treatment would be Nexium, Zantac, and Maxolon - drugs that I'd already been taking, which didn't work. There was a chance that it was a different kind of ulcer caused by the Helicobacter pylori bacterium, and if that were the case, the treatment would be two antibiotics and a "proton pump inhibitor", a type of drug that reduces gastric acid production in the stomach.
An endoscopy costs S$300-400 (US$200-275). I didn't want to spend that kind of money.
Then the doctor did a physical examination to locate exactly where the stomach pains were. Luckily, I'm a grown-up and can be a bit more precise than "I have a tummy ache." As she tapped away and asked for my responses, she started shaking her head. Her conclusion? It's not an ulcer at all. It's my liver. My biggest worry.
Liver failure, apparently, is the most painful way to die. If you die of lung failure, there's still a chance you can expire with grace and dignity, like in the movies. Deep breath, gentle closing of eyes, quotable sentimental words, then fade out to black. But with liver failure, there's groaning and moaning, agony and excruciating pain. So unladylike! Not to mention the trauma and stress on the family.
So here's our situation at the moment. My liver's not doing so well. I'll have my liver scanned with an ultrasound when my regular oncologist returns from her vacation.
Meanwhile, the only thing we can do is treat the symptoms. We've now upped the anti-nausea ante to Motilium, and if that's not enough, I have Kytril as a back-up, but these tiny pills are S$30 (US$21) per pill! Now that hurts! For pain, I've now moved on to morphine from the codeine-paracetamol combo I was on. Let's see if these drug changes make any difference. I used to be so adverse to taking pills for any reason. Now, they're my main source of food.
Today, I actually ingested more pills than food. No kidding. Food tally: about four noodles (not bowlfuls, but actual strands of noodles) with two small squares of cabbage in a clear broth, one bite of pizza crust, and two digestive biscuits. Pill tally: more than 20 pills for seizures, pain, nausea, breathing problems, hand-foot syndrome, protein support.
A friend of mine got laid off last week and I told him the timing really stank. Who would fire somebody just before Christmas? He said, "Well, it could be worse. I could have cancer." Now here I am with some lousy news. Well, it could be worse. I could lose my sense of humor and think my friend's comment wasn't funny. Now that would be truly tragic. But he made me laugh. Hey, I can still laugh.
Monday, December 22, 2008
A Tale of Two Tales
Tale Number One:
Tony came back from the supermarket yesterday after doing the food shopping, then fired up the barbecue and made lunch for the nine of us (visiting in-laws). He gave me a hamburger as I requested, but instead of expressing my gratitude, I told him it was silly to give me half a burger with a whole bun, plus I wanted onion, and when I got the slice of onion, it was a circle rather than a semi-circle so it wouldn't fit onto my burger, plus he'd cut the onion on our wooden cutting board, which I'd told him leaves an onion taste that will transfer to any fruit we cut on the board later on. So here he had gone through all this trouble to make me happy and instead of being thankful, all I could do was come up with reasons to criticize everything he did.
Tale Number Two:
Just after the incident described above, Josie was jumping on a side table in our living room and I saw that it could be quite dangerous, especially for her little cousin who's staying with us and copying everything Josie does. So I asked Tony if there was somewhere else he could put the table that was safer for the kids. He angrily grabbed the table, threw everything off it and shoved the table into a corner. I asked in a challenging, emotional voice, why he was acting so strangely and why he couldn't just listen to me and answer my question instead of being so rude and dismissive. I told him he was being unreasonable when all I wanted to do was solve a problem. All this in front of his entire family, including the kids. I persisted in asking him to respond with some explanation until he finally just walked out of the house.
Multiple choice question. Which of the following best describes the situation above?
A) Tony was being unreasonable - all he had to do was suggest a safer place to put the table.
B) I was being ungrateful - I could have thanked him for his troubles instead of criticizing every little thing he did.
C) Tony should have listened to me instead of dismissing me and ignoring me.
D) I should have given him some space instead of haranguing him while he was feeling besieged by my criticisms.
E) All of the above.
I'm not sure which of the two stories makes me look more sympathetic and Tony look like the villain, but I pick that one, whichever it is. I'd really like to lick my wounds and have my actions vindicated. Poor Shin. Bad Tony. But that's too simple and silly.
All couples have communication challenges. Tony and I certainly have our share. I have my own communication issues now because I can't express myself as well as I'd like, due to the cancer and various side effects. One of my favorite strategies in an argument is to diffuse the tense moment with some humor or a compliment. That takes a certain control of voice, tone, a mischievous smile or flirtatious wink. I don't have many of those at my disposal these days.
But this stymied style of mine is also a reason to open my ears and think a bit more. If I had been a bit more breathless yesterday and really couldn't speak at all, I might have kept my mouth shut and given Tony the silence he needed instead of pushing him to answer me.
I wish I could say cancer has given me new wisdom and depth of understanding about myself and my relationships, but it hasn't. I'm still making mistakes and I'm still fixing them. I'm Bob the Builder. Can we fix it? Yes we can! I'm a work in progress. Aren't we all?
Tony came back from the supermarket yesterday after doing the food shopping, then fired up the barbecue and made lunch for the nine of us (visiting in-laws). He gave me a hamburger as I requested, but instead of expressing my gratitude, I told him it was silly to give me half a burger with a whole bun, plus I wanted onion, and when I got the slice of onion, it was a circle rather than a semi-circle so it wouldn't fit onto my burger, plus he'd cut the onion on our wooden cutting board, which I'd told him leaves an onion taste that will transfer to any fruit we cut on the board later on. So here he had gone through all this trouble to make me happy and instead of being thankful, all I could do was come up with reasons to criticize everything he did.
Tale Number Two:
Just after the incident described above, Josie was jumping on a side table in our living room and I saw that it could be quite dangerous, especially for her little cousin who's staying with us and copying everything Josie does. So I asked Tony if there was somewhere else he could put the table that was safer for the kids. He angrily grabbed the table, threw everything off it and shoved the table into a corner. I asked in a challenging, emotional voice, why he was acting so strangely and why he couldn't just listen to me and answer my question instead of being so rude and dismissive. I told him he was being unreasonable when all I wanted to do was solve a problem. All this in front of his entire family, including the kids. I persisted in asking him to respond with some explanation until he finally just walked out of the house.
Multiple choice question. Which of the following best describes the situation above?
A) Tony was being unreasonable - all he had to do was suggest a safer place to put the table.
B) I was being ungrateful - I could have thanked him for his troubles instead of criticizing every little thing he did.
C) Tony should have listened to me instead of dismissing me and ignoring me.
D) I should have given him some space instead of haranguing him while he was feeling besieged by my criticisms.
E) All of the above.
I'm not sure which of the two stories makes me look more sympathetic and Tony look like the villain, but I pick that one, whichever it is. I'd really like to lick my wounds and have my actions vindicated. Poor Shin. Bad Tony. But that's too simple and silly.
All couples have communication challenges. Tony and I certainly have our share. I have my own communication issues now because I can't express myself as well as I'd like, due to the cancer and various side effects. One of my favorite strategies in an argument is to diffuse the tense moment with some humor or a compliment. That takes a certain control of voice, tone, a mischievous smile or flirtatious wink. I don't have many of those at my disposal these days.
But this stymied style of mine is also a reason to open my ears and think a bit more. If I had been a bit more breathless yesterday and really couldn't speak at all, I might have kept my mouth shut and given Tony the silence he needed instead of pushing him to answer me.
I wish I could say cancer has given me new wisdom and depth of understanding about myself and my relationships, but it hasn't. I'm still making mistakes and I'm still fixing them. I'm Bob the Builder. Can we fix it? Yes we can! I'm a work in progress. Aren't we all?
Friday, December 19, 2008
Toby's Tears
Yesterday, we had a minor scare when this silly cancer patient decided to climb on top of two suitcases to put a dangerous toy out of toddlers' reach. I lost my balance and toppled down, landing on my back. I've seen enough movies and TV to know that when you land on your back, you don't move, just in case you've done something to your spine.
The noise I made on the way down - the suitcases tumbling down on top of each other, me landing on the toys littering the floor, a number of things - caused an almighty crash; much louder than the actual danger represented. My in-laws, who are here visiting from the U.S., sounded the alarm and Tony, Josie, and Nana came running in from the pool, dripping wet and scared.
The reaction that really made an impression on me was Toby's. He was in the room when I fell, and the first thing I remember when I found myself lying on that floor was little Toby sitting by my side, his arms around my neck, crying softly and saying, "Mommy? Mommy?"
These were new tears that I'd never seen from Toby before. I've seen angry, frustrated tears, tantrum tears, sad tears. But these were scared tears. The poor little guy was frightened for his mommy. He knew I was hurt (the noise must've really startled him) and he wanted to take care of me but didn't know how.
There are some lessons I've taken away from this incident:
1) Toby is not oblivious to my weakened condition and notices when I need help.
2) Toby has a soft heart for his mommy, even though he acts like a toughie.
3) I need to stop climbing on suitcases.
The noise I made on the way down - the suitcases tumbling down on top of each other, me landing on the toys littering the floor, a number of things - caused an almighty crash; much louder than the actual danger represented. My in-laws, who are here visiting from the U.S., sounded the alarm and Tony, Josie, and Nana came running in from the pool, dripping wet and scared.
The reaction that really made an impression on me was Toby's. He was in the room when I fell, and the first thing I remember when I found myself lying on that floor was little Toby sitting by my side, his arms around my neck, crying softly and saying, "Mommy? Mommy?"
These were new tears that I'd never seen from Toby before. I've seen angry, frustrated tears, tantrum tears, sad tears. But these were scared tears. The poor little guy was frightened for his mommy. He knew I was hurt (the noise must've really startled him) and he wanted to take care of me but didn't know how.
There are some lessons I've taken away from this incident:
1) Toby is not oblivious to my weakened condition and notices when I need help.
2) Toby has a soft heart for his mommy, even though he acts like a toughie.
3) I need to stop climbing on suitcases.
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