I had my brain MRI and liver ultrasound today. The cancer has spread to my brain -- three small spots, the largest of which is 8.1 mm. The liver ultrasound shows that the four small spots that were seen in January have now become five spots, the largest of which is 3.06 cm.
This sounds pretty bad, but my oncologist says she's not as worried about the brain tumors as she is about the lung and liver spread.
I've read somewhere that humans only use ten percent of their brains anyway. And I probably use even less than that. If I'm lucky, those tumors are in the part of my brain that makes me care about silly things like whether my kids are wearing the right shoes or brushing their teeth in circular, rather than back-and-forth motions.
The good news is, I have yet another excuse for my absent-mindedness and forgetfulness, so if you're still waiting for that thank-you note for last year's Christmas gifts, you might have to give up on that.
On a more serious note, I need some help. I need to decide in the next few days (preferably, by tomorrow) what I'm going to do about further treatment. Here are a few of the options my oncologist has suggested, in no particular order of preference:
1) Gamma Knife to remove the brain tumors.
2) Apply for clinical trials for new drugs in the U.S. (anti-HER2 protocols: HSP90 inhibitors and T-DM-1 antibody/chemotherapy drug).
3) Different chemo drugs in Singapore: Gemcitabine, Capecitabine, Taxotere, Abraxane with or without Herceptin or Tykerb.
4) Different combo of drugs: Tykerb + Herceptin + Gemcitabine or Herceptin + Gemcitabine.
Michelle, Tony, and I will probably be up most of tonight researching all of these options on the Internet and whatever books we have on cancer in my personal library.
If any of you could help research some of this stuff and send it to us, it would help a great deal. Better yet, if any of you reading this are in the oncology field or know someone who is and can get their opinion on these or other options, I would be extremely grateful.
I'm not too upset or shocked or sad. I had a gut feeling the cancer was in my brain. I felt it had spread to my liver and lungs. So I'm okay with this. I'm in information-gathering mode now. Now that I know more about what I'm dealing with, I need to find a way to extend my life (and quality of life) for as long as I can.
I'm worried about my family and friends and how they'll handle this news. My advice is... be sad, angry, whatever you need to do, then get over it and help me do some research.
My thinking is.. I have a problem. Face it, study it, find a solution. Or at least die trying. And enjoy my life while I still can. So we're going out now to have some burgers and beer before we start our cram session on "How to Save Shin's Life".
Tuesday, February 26, 2008
Sunday, February 24, 2008
Cancer, Not Infection
Just home from the hospital. My gut instinct all along was that all the white stuff on my lung X-rays was cancer, rather than the infection that my oncologist and two respiratory physicians said it was. The biopsy results came out this morning and it's cancer.
I also learned that they'd given me an overdose of sedative during the biopsy -- 5 mls. of the drug instead of the 2 mls (diluted) that I was supposed to have. Yikes! Big mistake. The doctor said I went into seizures during the operation, so they had to stop for a while and give me more drugs to stop the seizures! I was supposed to wake up 15 minutes after the biopsy and go back to my hospital room, but instead, I spent seven hours in the Intensive Care Unit, giving Tony and Michelle (friend from Sydney) one helluva scare. I could've ended up in a coma! What a close call! I'm just glad I wasn't there to see it all because I'd have been pretty worried.
Well, the good thing is, I'm still alive and I have lots of people around to look after me.
Now my oncologist has to figure out what chemo drugs to try on me next since it seems the last two didn't work. I'll have some more tests done on Monday to see if the cancer's spread to the brain and whether the tumors on the liver have gotten worse.
It's a lot of bad news to digest all at once, but I'm still hopeful that some good news will come our way soon.
For now, I just need to get some rest and give my body a chance to recover from the biopsy and all the drugs that have been pumped into me in the last 24 hours.
I also learned that they'd given me an overdose of sedative during the biopsy -- 5 mls. of the drug instead of the 2 mls (diluted) that I was supposed to have. Yikes! Big mistake. The doctor said I went into seizures during the operation, so they had to stop for a while and give me more drugs to stop the seizures! I was supposed to wake up 15 minutes after the biopsy and go back to my hospital room, but instead, I spent seven hours in the Intensive Care Unit, giving Tony and Michelle (friend from Sydney) one helluva scare. I could've ended up in a coma! What a close call! I'm just glad I wasn't there to see it all because I'd have been pretty worried.
Well, the good thing is, I'm still alive and I have lots of people around to look after me.
Now my oncologist has to figure out what chemo drugs to try on me next since it seems the last two didn't work. I'll have some more tests done on Monday to see if the cancer's spread to the brain and whether the tumors on the liver have gotten worse.
It's a lot of bad news to digest all at once, but I'm still hopeful that some good news will come our way soon.
For now, I just need to get some rest and give my body a chance to recover from the biopsy and all the drugs that have been pumped into me in the last 24 hours.
Update on Shin
This is Michelle, Shin's friend from Sydney. I was with Tony during Shin's hospital stay yesterday while Shin was off with the drugged out fairies. Shin asked me to write down what happened to her while she was asleep or drifting in and out of consciousness. So bear with me as I paw through the details in a slightly less eloquent way than Shin would - she's a journalist, I'm an analyst!
We arrived at the hospital early so Shin could be prepped for her lung biopsy. We were told the procedure would see her out of the hospital room at 8am and back in to it at 9.15am. An hour for the operation and 15 minutes of recovery time afterwards. The reality was very different.
During the first hour Tony and I relaxed over a cup of coffee. Though the risks of the surgery had been pointed out to us, they were minimal and our main focus was on getting the results. We were back in the room at 8.45 am. At 9.15 am the surgeon called Tony and asked to see us. The surgeon looked like he had seen a ghost.
He told us that there had been a mistake and that Shin had been overdosed with anesthetic (Xylocaine) to the tune of 2.5 times the amount she was supposed to get. It was a local anesthetic that had been put directly into her lungs by the head operating theatre nurse. He said in addition, given how small Shin is, the impact of this mistake was even greater.
He told us she was in the Intensive Care Unit. Her body was "twitching" for the second part of the biopsy which forced him to finish it early. She had gone into a seizure caused by the overdose of anesthetic. The anesthetist gave her four more sedative drugs (Valium, ???, Dilantin, Thiopental) in her veins to try and take control of her body and brain. Eventually the third and fourth worked and her seizures stopped.
Yes, the surgeon apologized. He took responsibility for the mistake. I liked his integrity in handling the situation and communicating with us.
Tony and I were allowed to go in and see her in ICU. She sure was out of it. The drugs they were giving her via IV drip were keeping her sedated while the overdose wore off. It was like she was in a coma.
Tony spoke to her first. He said, "We're here Shin, we're looking after you." Shin took a noisy gasp of air in and then went back in to her coma-like state. She knew we were there. She was like that for hours. Three hours. At 12 noon her blood pressure was so low they turned off the brain sedation (Thiopental). After a half hour she started waking up.
And in true Shin style she brought the humor into a dire situation. I remember her first intelligible words were said with her head towards Tony, "I love you." Two minutes later she turned her head to me and said, "You're still here."
From that point on it was a comedy routine: from "I'm not dead yet?" to singing, "You are my sunshine, my little sunshine." She tried to sit up, without success, and when asked what she was doing, said, "I'm just showing off". The nurse, whose name was Xioa-na (similar to Shin's name) said hello to Shin in Korean, which surprised and impressed Shin, even in her dazed state. She was in and out of consciousness.
At one point, Shin sat up a bit and started shaking her head violently from side to side with a goofy look on her face. She talked about the tubes they put in during the procedure, saying, "They put it up my nose. What would they do if I had boogers up there?"
After a comical night at the hospital Shin is back home today and is OK. She is still tired but is certainly on the mend.
We arrived at the hospital early so Shin could be prepped for her lung biopsy. We were told the procedure would see her out of the hospital room at 8am and back in to it at 9.15am. An hour for the operation and 15 minutes of recovery time afterwards. The reality was very different.
During the first hour Tony and I relaxed over a cup of coffee. Though the risks of the surgery had been pointed out to us, they were minimal and our main focus was on getting the results. We were back in the room at 8.45 am. At 9.15 am the surgeon called Tony and asked to see us. The surgeon looked like he had seen a ghost.
He told us that there had been a mistake and that Shin had been overdosed with anesthetic (Xylocaine) to the tune of 2.5 times the amount she was supposed to get. It was a local anesthetic that had been put directly into her lungs by the head operating theatre nurse. He said in addition, given how small Shin is, the impact of this mistake was even greater.
He told us she was in the Intensive Care Unit. Her body was "twitching" for the second part of the biopsy which forced him to finish it early. She had gone into a seizure caused by the overdose of anesthetic. The anesthetist gave her four more sedative drugs (Valium, ???, Dilantin, Thiopental) in her veins to try and take control of her body and brain. Eventually the third and fourth worked and her seizures stopped.
Yes, the surgeon apologized. He took responsibility for the mistake. I liked his integrity in handling the situation and communicating with us.
Tony and I were allowed to go in and see her in ICU. She sure was out of it. The drugs they were giving her via IV drip were keeping her sedated while the overdose wore off. It was like she was in a coma.
Tony spoke to her first. He said, "We're here Shin, we're looking after you." Shin took a noisy gasp of air in and then went back in to her coma-like state. She knew we were there. She was like that for hours. Three hours. At 12 noon her blood pressure was so low they turned off the brain sedation (Thiopental). After a half hour she started waking up.
And in true Shin style she brought the humor into a dire situation. I remember her first intelligible words were said with her head towards Tony, "I love you." Two minutes later she turned her head to me and said, "You're still here."
From that point on it was a comedy routine: from "I'm not dead yet?" to singing, "You are my sunshine, my little sunshine." She tried to sit up, without success, and when asked what she was doing, said, "I'm just showing off". The nurse, whose name was Xioa-na (similar to Shin's name) said hello to Shin in Korean, which surprised and impressed Shin, even in her dazed state. She was in and out of consciousness.
At one point, Shin sat up a bit and started shaking her head violently from side to side with a goofy look on her face. She talked about the tubes they put in during the procedure, saying, "They put it up my nose. What would they do if I had boogers up there?"
After a comical night at the hospital Shin is back home today and is OK. She is still tired but is certainly on the mend.
Friday, February 22, 2008
Lung Biopsy
I'm checking into the hospital tomorrow morning for a lung biopsy. I've been to two respiratory physicians now and they agree that after almost two months of antibiotics, my chest infection has not gotten any better. I had another chest X-Ray today -- the fifth since January -- and no improvement.
We hope tomorrow's biopsy will rule out cancer and perhaps tell us what sort of infection we're dealing with so we can find a way to get rid of it.
I'll spend tomorrow night in the hospital and be back home Saturday.
Wish me luck!
We hope tomorrow's biopsy will rule out cancer and perhaps tell us what sort of infection we're dealing with so we can find a way to get rid of it.
I'll spend tomorrow night in the hospital and be back home Saturday.
Wish me luck!
Tuesday, February 19, 2008
Cancer as Opportunity
A fellow cancer survivor sent me a link to this video that's been circulating on the Internet. It's the last lecture given by a professor to his students. He has pancreatic cancer and was told he has a few months to live. And no, this isn't a story about beating the beast; it's about final life lessons from a dying man -- a bit like the professor in "Tuesdays with Morrie".
This guy doesn't say anything extraordinary or new. In fact, you could argue that he sounds a lot like those "inspirational" plaques about teamwork and determination that adorn the walls of company coffee break rooms. He advises us to follow our dreams, work hard, enjoy life, value people over things, be humble, honest, patient. Nothing new.
But the fact that he is the father of three very young children and has only a few months to live gives his words meaning and poignancy. He also happens to be a very engaging and entertaining speaker.
There are a few good things about having cancer:
1) People listen to you when you talk about values and life lessons -- people who would otherwise just dismiss you as a preacher of platitudes.
2) You have the opportunity to show people what you're really made of. My friends say they're impressed with the way I've been handling myself throughout my cancer experience, but how do they know they wouldn't do the same in my shoes? I have the unique opportunity to show everyone my best qualities under trying circumstances. Most people never get that chance. I almost feel sorry for all of you who don't have cancer. (Not really).
This guy doesn't say anything extraordinary or new. In fact, you could argue that he sounds a lot like those "inspirational" plaques about teamwork and determination that adorn the walls of company coffee break rooms. He advises us to follow our dreams, work hard, enjoy life, value people over things, be humble, honest, patient. Nothing new.
But the fact that he is the father of three very young children and has only a few months to live gives his words meaning and poignancy. He also happens to be a very engaging and entertaining speaker.
There are a few good things about having cancer:
1) People listen to you when you talk about values and life lessons -- people who would otherwise just dismiss you as a preacher of platitudes.
2) You have the opportunity to show people what you're really made of. My friends say they're impressed with the way I've been handling myself throughout my cancer experience, but how do they know they wouldn't do the same in my shoes? I have the unique opportunity to show everyone my best qualities under trying circumstances. Most people never get that chance. I almost feel sorry for all of you who don't have cancer. (Not really).
Sunday, February 17, 2008
To Do List Done!
Thought I'd better post this notice that all the jobs I asked for help with have been done!
Not only those jobs, but some of my over-achieving friends have invented more jobs to do so they could go do them!
Wow. I know some amazing people.
Thanks so much!
Not only those jobs, but some of my over-achieving friends have invented more jobs to do so they could go do them!
Wow. I know some amazing people.
Thanks so much!
Saturday, February 16, 2008
Update and Thanks
After two days of body aches, chills and fever, I finally felt back to normal today.
My mouth still hurts, even when I eat soup. It's amazing how much a little thing like ulcers in the mouth can take over your life! I know some of you live with chronic pain in the back, knees and hips. I had one friend who had a root canal and suffered from the surgery and its complications for over a year.
I can't imagine living with that kind of pain for over a year. I think I'd rather have all the pain all at once than a chronic, niggling pain over a long period of time. But I guess I'd better start imagining it pretty soon!
Thanks to all of you who've gone through my To Do List! I have several days' worth of yummy soup and dahl in my fridge and freezer. I just had some of Helen's soup -- the best meal I've had in three days! It was painful, but sooooo worth it!
And this brings me to repeat myself on something I've learned about cancer and human nature. We're capable of incredible strength, courage, acts of kindness and generosity. I'm really bowled over by some of the things my family and friends have done for me, Tony and the kids during the past few years.
When we had Thanksgiving dinner last year, we went around the table and said what we were thankful for. One very wise friend said, "I'm thankful that we haven't all succumbed to the cynicism of our times." I think he might have put it more eloquently, but the idea that we can still be optimistic about the world despite so much cynicism gives me hope that Josie and Toby will grow up in a happy world.
Thanks again to all you, for your prayers and good wishes, for stocking my kitchen with food that I can eat, for looking after my kids, for giving me kind words of support and encouragement. And, of course, for reading my Blog.
My mouth still hurts, even when I eat soup. It's amazing how much a little thing like ulcers in the mouth can take over your life! I know some of you live with chronic pain in the back, knees and hips. I had one friend who had a root canal and suffered from the surgery and its complications for over a year.
I can't imagine living with that kind of pain for over a year. I think I'd rather have all the pain all at once than a chronic, niggling pain over a long period of time. But I guess I'd better start imagining it pretty soon!
Thanks to all of you who've gone through my To Do List! I have several days' worth of yummy soup and dahl in my fridge and freezer. I just had some of Helen's soup -- the best meal I've had in three days! It was painful, but sooooo worth it!
And this brings me to repeat myself on something I've learned about cancer and human nature. We're capable of incredible strength, courage, acts of kindness and generosity. I'm really bowled over by some of the things my family and friends have done for me, Tony and the kids during the past few years.
When we had Thanksgiving dinner last year, we went around the table and said what we were thankful for. One very wise friend said, "I'm thankful that we haven't all succumbed to the cynicism of our times." I think he might have put it more eloquently, but the idea that we can still be optimistic about the world despite so much cynicism gives me hope that Josie and Toby will grow up in a happy world.
Thanks again to all you, for your prayers and good wishes, for stocking my kitchen with food that I can eat, for looking after my kids, for giving me kind words of support and encouragement. And, of course, for reading my Blog.
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