Thursday, February 28, 2008

Talking to Kids About Death

I'm writing this Blog entry to anyone who has contact with Josie and Toby. This whole business of terminal illness and death is way too scary for us adults and having to expose our children to it at such a young age is heart-breaking. But I will talk about this because some of you have asked me to do so.

I will let you know what I have said to Josie and Toby about my situation so that you know the language and level of information they've been exposed to. I share this with you in the hope that it will help ease your anxiety about talking to my kids or your own kids about what is happening.

When I was first diagnosed with breast cancer in December 2005, I told Josie, who was not yet three years old, "I have a disease called cancer in my breast here (I put her hand on the lump), and the doctor will take it out so it won't make me sick. Then they'll give me some medicine so that the cancer won't come back. This medicine, called chemotherapy, will make all my hair fall out. It might also make me tired and sick. But then, my hair will grow back and I'll get better."

She didn't ask any questions immediately after this very short talk and went off to play. But over the following two years of my treatment, remission, and recurrence, she asked for further details -- everything from "What are cancer cells?" to "Are you going to die?" I've always been honest with Josie and answered all of her questions. My answer to that last question was, "All living things die eventually. Plants, insects, even people. So I will die someday, but probably not for a very long time."

Since this last spate of bad news about the spread of my cancer and the very realistic possibility that I may have weeks or months of quality life left, I've had to have another conversation with Josie today. It went something like this, over chocolate cake and baby cino at Starbucks (her request).

"Remember when you were three and I told you about my cancer? The surgery took out the lump and the chemo made the cancer cells go away and then my hair grew back, right? And you know that I'm bald again because those pesky cancer cells came back and I had to take more chemo that made my hair fall out. But it seems the medicine isn't working so now we're trying another kind of chemo. The doctors are working really hard to keep those cancer cells away and I'm trying very hard to stay strong and you're helping me also by looking after Toby and being kind to Daddy and me. We're all doing our best."

There were many pauses while Josie fiddled with cake and drink, giggled and tried to change the subject. I asked several times if she'd like to talk about this another time and just enjoy her cake, and she said she wanted to continue the conversation.

She didn't ask any questions, so I said, "What do you think will happen if we all try our best but the cancer cells won't go away?"

She said, "Then we'll just be patient and keep trying until they all go away and don't come back ever again."

"There are some things in this world that we can't control no matter how hard we try. We can all try our best, but maybe the cancer won't go away. And it's not the doctor's fault, it's not my fault, it's not your fault, it's nobody's fault."

"We'll just keep trying forever."

"Josie, the only thing that's forever is love. My love for you. That will never change, no matter what."

And I ended this "story" by asking, "What do you think is the most important thing to remember from what we talked about just now?"

Some mumbling; no clear answer.

"Three words, Josie: I love you. That's the most important thing you need to remember about what we've talked about today."

"What about more words?"

"Then it's 'I love you. And I always will. And I will always be in your heart, even if you can't see me.'"

Somewhere during this exchange, Josie asked what would happen after I died. I didn't mention the words death or dying; she did. I told her I wasn't sure. She said, "You'll go to heaven and be with God and look down at me from heaven." I told her I thought that was a nice thought. As you know, I'm not religious myself, but if Josie needs to believe in God and heaven to get through this, then I wholeheartedly encourage it. But to the very end, I will be honest with her and tell her that I'm not sure. She, in her infinite wisdom, seems more sure about God and heaven than I am. I'm thankful that she has this security blanket.

As for Toby... he's only two and a half years old. I'm not going to sit him down for a talk like the one I had with Josie. But as with Josie, I will speak about my cancer and treatment openly in front of him and take my cues from him about how much information he needs based on questions he asks. I've told Josie that if she ever has any questions about anything at all that she may hear me or other people say, she can ask me. I feel that sometimes, as parents, we tell our children what we think they need to know and in some situations, maybe we should allow them to tell us what they need to know.

I understand that my approach may be very different from yours. You may not want your children to hear the word "cancer" because they've had a grandparent die from the disease. You may not want your children to be exposed to the very idea of death at all at such a young age. I respect that we all have different ways of dealing with illness and death. I just want to allay any fears you may have of saying something to upset my children because you don't know how much they've been told.

One parent is worried her daughter might ask Josie if I'm going to die. I've told that parent not to be anxious about that. Children will have conversations and thoughts that we cannot control. But I'd be curious to know what Josie's answer to that question would be.

I know my kids well enough and feel confident enough in the way I've raised them and spoken to them so far, that I'm not too anxious about what they might hear from other children, parents, or teachers.

I'm more concerned about causing you and your children anxiety or fear due to my situation. If you're at all worried about what your children might learn about me and my cancer and there's anything I can do to ease your concerns, please let me know. My kids and family have been forced to face these difficult topics; we've had no choice. I don't want to force these issues on your families against your wishes, if I can help it.

So far, the outpouring of support from all of you has been overwhelming and heart-warming. I'm amazed at what kindness and generosity people are capable of. But I'm also aware of your need to protect yourselves and your children from fear and anxiety. So if you'd like me NOT to mention the word "cancer" in front of your children, for example, please let me know. If you have concerns you'd like to bring up with me, please feel free to do so.

It is unfortunate but unavoidable that cancer affects not just the patient, but everyone who comes into contact with the patient. I think this is harder on many of you than it is on me. Let me know if there's any way I can help make it easier for you. There's just so much I can do for myself at this point. It's not about me anymore. Now it's about how to make it okay for the people I'll leave behind, whenever that may be.

Sorry about the rambling -- I've had very little sleep lately, I have chemo brain, and now I have tumors in my brain. All great excuses for any tactlessness, faux-pas, or lapses in judgement I may have committed. Please forgive me if I've offended any of you, and bear in mind my intentions rather than my words.

Wednesday, February 27, 2008

New Chemo

I began a new chemo regimen today:

Gemcitabine (Gemzar) + Cisplatin + Tykerb

Plus, drugs to help control side effects:

Dexamethasone, Zantac, Calcium Gluconate, Magnesium Sulfate, Kytril, Multivitamin (w/magnesium)

If you have any knowledge or personal experience of any of these drugs and have any feedback to offer regarding effectiveness, success rates, side effects and how to control them, anything at all, please feel free to share your thoughts.

Thanks so much to all of you who have spent many, many hours doing the research that helped me come to the decision to start on this new set of drugs. Your efforts are helping me make life-and-death decisions while maintaining my sanity. If you think I'm being brave, I have all of you to thank. Without your help, I don't know if I'd be handling this so well.

I'm still researching the Gamma Knife option for my brain tumors, but I'm hoping that while I look further into that option, this new chemo regime I've started will at least control the spread of cancer in the rest of my body and perhaps even slow down the growth in my brain. I'm also looking into other drugs and procedures that many of you have pointed me toward. I'll continue to pursue these other options.

A few things to consider:

1) Three tumors in my brain showed up on the MRI. We can assume that there are others that did not show up because they haven't become large enough yet. So getting the ones that we can see with the Gamma Knife doesn't mean I won't have any more brain tumors. Also, the Gamma Knife costs about S$20,000. It doesn't seem practical to spend that kind of money if I need to keep doing this same procedure every few months to get rid of additional tumors that will pop up. Also, whole brain radiation is often recommended with the Gamma Knife procedure. I have all sorts of issues with radiation, but I'm still looking into it.

2) The success rate for new chemo regimes once old ones have failed is not so great. According to my research, I may have as little as one or two months of life left if I choose to pursue NO treatment at all. This new chemo regime may give me several additional months, IF it works. But that also means I will be suffering from side effects and a somewhat diminished quality of life. I'm taking a chance to see how this works, but if I become so sick and incapacitated that I can't be a mother to my kids, I will face the difficult choice between a few months of quality life with my children and a mere chance at several more months of being too sick to really be living at all.

3) There is still hope. If this new chemo combo doesn't work, there are others I can try. I've read about a woman who had breast cancer SEVEN times and went through an entire menu of drugs over decades and she is still alive. My friend's mother has had cancer FOUR times in four different places over two decades and she is alive and energetic. I know a woman who has had THREE different cancers over three decades and she is still alive and running marathons. And I know a woman who started off with Stage IV breast cancer, the most aggressive and fast-moving tumors her doctors had ever seen, and went through three courses of chemo, three surgeries, five weeks of radiation -- all with almost ZERO side effects. She finished three 10 km runs and competed in a number of dragon boat races. She's still alive more than two years later, beating the statistics. And she's surrounded by amazing people who are doing all sorts of extraordinary things for her and her family so that their lives are not only as good as they were before cancer, but in many ways, even better. I think you all know who that woman is.

I thank you with all of my heart -- which, I believe, is one part of the body that cancer cannot get.

Tuesday, February 26, 2008

Spread to Brain, Liver

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".

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.

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.

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!

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).

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!

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.

Friday, February 15, 2008

Asking for Help

I went in for another blood count today -- still too low for chemo. The doctor said I need to take a few weeks off to give my body a chance to fight the chest infection first. Then I went to see a "cough and chest" specialist. He said I should go back on antibiotics, and if there's no improvement after a week, we'll do a lung biopsy to see if the infection is actually cancer. So I just need to rest for a week or so.

The insides of my mouth and throat are covered in ulcers now, in addition to the red, raw swelling. This is a side-effect of the chemo, which I escaped before, but now that my immune system is down so much, I'm getting all these side-effects. I feel like someone's punched me in the upper lip, and I can't eat or drink without dribbling. It hurts when I talk, eat, or swallow. Hence, limited phone calls.

I guess I haven't been taking this chemo-induced low immune system seriously enough. I thought it was no big deal if I got a little cold or an infection, so I didn't stay away from crowds or avoid kissing and hugging people, especially little kids. So now I'm paying for it. This chest infection is putting my chemo on hold, and that's giving the cancer cells time to run amok. Far more serious than just catching a cold, after all.

So now that I'm pretty much home-bound for a week or so, I think I'll do something I've been avoiding. I think I'll ask for help.

Many of you have offered all sorts of help. Some of you have said you feel helpless because you want to do something for me but you don't know what. I didn't want to ask for help because I didn't want to put anyone out. You're all busy and I wouldn't want you to upset your routine or especially your children's routine so you can drive me to my chemo. So instead of asking any of you for specific things, I thought I'd list a number of jobs I need done and anyone who's able to do these things for me can volunteer. That way, nobody feels obligated and I don't feel like I'm putting anybody on the spot.

This might be a bit presumptuous, but if I were in your shoes, I'd want to do something too. So here are the jobs I need done:

- DBS Bank. I need you to pick up a few cheques from my house and put them in the bank's Quick Check Deposit slot at the bank.
- Post office. I need you to buy some U.S./Australia stamps.
- Fresh wheatgrass. Someone, I can't remember who, has told me she knows where to get fresh wheatgrass for juicing, cheap. I haven't been able to find it at any of the organic shops for several weeks now.
- Soup (no meat, dairy, egg, sugar), preferably pureed or with small, soft chunks. I can't eat solid food at the moment, so I'll need to subsist on soup until these mouth and throat ulcers go away.
- Organic supermarket. I need organic, hormone and antibiotic-free eggs and organic tamari sauce. Brown Rice Paradise in Tanglin Mall is having a 15% off everything sale this Saturday, before they close down for renovations. I'll also need some fruit and veggies, but don't know exactly what yet.
- Someone to drive my mother-in-law around next week to do some shopping for Josie's princess birthday party. She can drive, but she's not used to driving on the left side of the road and she doesn't know her way around town. So if any of you are going to IKEA, Spotlight, or Art Friends anyway, maybe you could take Carol with you?


Thursday, February 14, 2008

Chemo Update

This hasn't been a very good week, chemo-wise. I went to the doctor's on Monday for my blood work and my white blood cell count was too low for chemo -- the lowest it's ever been in the past two years. So I was given two G-CSF shots to boost my white blood cells and sent home. My coughing hasn't improved so my doctor wanted me to have another chest X-Ray, but my blood count was so low, she didn't want me in the hospital around so many sick people. So she said we'd try the next day.

On Tuesday, I went in again for a blood count -- again, too low. Those G-CSF shots that usually do the trick don't seem to be working very well anymore. But I had two more of those shots, plus a chest X-Ray. My doctor looked at the X-Ray and said my lungs have not gotten WORSE, although they haven't gotten any better. She wants me to see a lung specialist, but not while my blood count's so low, so she sent me home to rest for a day before trying again.

So that's where I am now. At home, in bed, mentally cheering on my bone marrow to make more white blood cells. The G-CSF shots have made my legs feel like jelly, so I'm not very steady on my feet. But at least I can still MOVE my legs. I have to stay away from people while my blood count is so low, lest I pick up viruses or bacteria that people with normal immune systems would have no trouble fighting off. So I feel like I'm playing hooky from school. I have errands to run -- the bank, the post office, the immigration office for Josie's new passport, etc. But I'll have to put all that on hold since I'm just supposed to sit and rest.

I also seem to have lost a layer of skin in my mouth -- it's red, raw, and swollen. Not mouth ulcers, which is a common side effect of chemo, but just missing an outer layer of skin. Has this ever happened to any of you?

Tuesday, February 12, 2008

Why I Am Not a Christian

I have a number of Christian friends who are praying for me and wishing for me to find God before my time runs out. I'd like to write this Blog entry for them and for those of you who, like me, may not be religious.

I have been surrounded by religion all of my life. I was baptized. I grew up in a religious household. My father, my brother, my sister-in-law are all ordained Presbyterian ministers. I've had no shortage of exposure to Christianity in my lifetime.

So why am I not a Christian?

I believe in a God that is better than the Christian God. My God does not work on a quid pro quo basis. He loves us unconditionally, without asking for anything in return, not even belief in him.

I never believed in unconditional love until I had kids. I used to think that love had to be earned and deserved. But I love my children without any strings attached. I believe that, as parents, we owe our children everything. After all, we brought them into this world. But our children, in return, owe us absolutely nothing. They didn't ask to be born. If they give us love and respect, it's a sign that we've done something right as parents. But it's not our due. I think this is a common mistake that parents make -- they believe all their sacrifices and heartache should be rewarded with obedient children who will treat them with respect and care for them in their old age.

I love my kids unconditionally and don't feel they owe me a thing. And I'm a mere flawed mortal. I believe God is better than we are. I believe he loves us unconditionally and asks nothing from us. Nothing.

As for the rewards of a Christian life -- eternal life basking in the glory and love of God... I don't want this. This is asking too much. I think I've already been blessed with the life I've been given on this Earth. That's more than enough for me. I don't want or ask for anything more beyond that.

I think religion has limited our knowledge of God and our access to God. I think Christians have assigned human traits to God -- jealousy, wrath, need for recognition. I believe God is beyond these and beyond anything we can understand. But what we CAN understand is that the world is full of evidence that there is some powerful force of good that is beyond any human attempts to destroy it.

I don't mean to insult my Christian friends and family. They have nothing but good intentions and my interests at heart. But I need to let them know that I believe God is watching over me and will look after the people I love after I'm gone, regardless of whether or not I give him due recognition.

A Delicious Life

I saw the movie, "The Diving-Bell and the Butterfly", a few days ago. It's based on the autobiography of the Elle magazine editor who suffered a stroke and was paralyzed completely, except for one eye. He used this one eye to blink "yes" or "no", and in this way, wrote his book.

This man in the movie was suffering my ultimate nightmare -- being trapped inside my body, unable to move, feel, or speak. It seems horrifyingly like being entombed alive.

A friend who recommended the movie to me said it was sad and I might shed some tears. But I didn't find it sad at all. I didn't feel sorry for the guy. He seemed more alive than many people I know who AREN'T paralyzed.

He said there were two things other than his eye that were not paralyzed: his memory and his imagination.

In one scene, as he's being fed through his IV drip, he imagines being in a restaurant with a beautiful woman. They're sucking oysters from the shell, picking up food with their hands, letting the juices drip down their chins. That's one of the most memorable scenes from any movie I've ever seen. It felt deliciously sensual and alive.

In another scene, the guy is in a wheelchair at the beach, watching his children run around on the sand. It looked like late summer, with a slight chill in the wind and bright sunlight bathing the whole scene. The wind kept blowing hair in their eyes as they romped around the beach. You could see the white-light reflection of the sun off their skin. You could almost feel and breathe the salt air.

These two scenes made the movie for me. And they gave me new appreciation for everything I still have. Just being able to taste and feel food in my mouth or being able to touch and hug my kids seem like delicious delights.

I came out of this movie feeling very alive and incredibly lucky. I could walk. I could talk. I could swallow my own saliva. I didn't have to be wheeled around, fed through an IV drip, moved around like a rag doll.

I won't become paralyzed like this man, but I realize there may come a time when I won't be able to taste food, move without pain, or walk. But that day isn't now. Right now, I've got oysters to savor, faces to kiss, and so many things to touch, smell and taste.

After the movie, I went off my diet for a few days and ate some naughty treats. I tasted every molecule of every bite, I think. I know these foods aren't good for me, but I thought I'd enjoy some of these tastes while I still can. Besides, I'll go back on my diet tomorrow and have the memory of the tastes I had to keep me going for some time.

I think some of the pleasures in life, especially food and drink, are meant to move us closer to death. Maybe we weren't meant to live to be a hundred and we're just getting greedy. Maybe we're meant to pack 100 years of life into just half that time so that we can enjoy what we have even more.

Wednesday, February 6, 2008

Apologies and Thanks

I think the most precious thing when you have cancer is time. The average life expectancy for women in the developed world is about eighty years. When you have cancer, that shrinks dramatically. In my case, average life expectancy is less than one year. That means I need to fit forty years of life into just months.

This ticking time clock is my biggest source of stress these days. It's 5:00 a.m. and I can't sleep. I've been lying awake for the past three hours, thinking of all the things I need to do:

- Write letters to friends and family so I don't die with things left unsaid.
- Answer phone calls, especially those from friends far away, whom I haven't spoke to in months.
- Respond to the 275 unanswered e-mails in my Inbox, some from as far back as a year or two. I've set some of these aside for a quiet moment when I can reflect and write a thoughtful, rather than a cursory, hurried response, but I just haven't found enough of those quiet moments.
- Go through piles of insurance documents to try to claim some money for my treatment from 2006. I've had to put this at the bottom of my priority list because time is far more precious than money right now.
- Update Josie's and Toby's baby books so they can see how they grew up and what they were like as babies.
- Write letters to Josie and Toby, telling them all the things I won't be around to tell them as they grow up.
- Post the many Blogs and thoughts I've written in my head, but not yet had the time to write down.
- Make lists of my wishes about what I'd like to happen after I die: funeral and burial requests, what to do with all the paperwork I'm leaving behind, what to do with my possessions I want to leave to family and friends.
- Buy presents for Josie and Toby for the big events in their lives: their sixteenth birthday, their move to college, their wedding, their first experience as parents. I'd like these to be kept for them and given to them after I'm gone.
- Do special things with Josie and Toby to create memories they can keep after I'm gone.
- Write a cancer information Blog site and a presentation for the Breast Cancer Foundation, which I've promised to do.
- Spend time with fellow cancer patients and survivors, to provide the support and encouragement I wish I'd had when I was first diagnosed and undergoing treatment.

And many, many mundane things like paying bills and planning healthy meals for the kids. Or the many things that a considerate, courteous person should do. I have Christmas presents, birthday presents and thank-you notes I still haven't sent out. I have telephone messages from a week ago I haven't responded to. I have promised dates with friends I haven't been able to keep yet.

I'm feeling quite overwhelmed. I'm constantly worried that my friends and family will never know how much their friendship, support, and encouragement have meant to me simply because I can't find the time to sit down to tell them. I'm constantly feeling the stress of having to spend time doing the things I need to do, knowing that I'm taking precious time away from my children.

I know that many of you feel the same time pressures that I do. I know many of you are juggling jobs, kids, spouses, family and friends and go for weeks and even months without having spent a single hour all to yourself. And despite that, you're offering to spend time with me and do things for me. I want you to know how much I appreciate all the offers of help I've had. I'm really impressed and touched that I have such incredibly thoughtful and caring friends and family.

You've all helped to renew my faith in people and dissolve my cynicism by showing me that there is true goodness in the human heart and in the world around us. You've given me hope for my children. Maybe because they're surrounded by all of our wonderful friends, they won't grow up with the cynicism that I did. They will grow up believing that human nature is inherently good and there is still hope in this world, despite what they hear about suicide bombings, child molesters, wars and murderers in the news.

As I lay in bed tonight, unable to sleep and feeling tense with all the things I want and need to say and do, I thought I should at least send out a general apology.

I'm sorry I haven't been able to keep up my end of correspondences and communications. I have written many letters in my head, asking how you're doing, how your children and spouses are doing, whether you're happy and healthy. I'm sorry I haven't been able to ask you in person or even in a phone call or e-mail.

I'm sorry I can't spend the time with you that I'd like to. Know that I'm thinking of you and hoping to one day tell you how much your friendship and support have meant to me, especially since my cancer diagnosis. You've all helped me and given me hope, each in your own special way. I hope to someday be able to tell you about it. I'm sorry I can't do all this now.

And I'm especially sorry I have to resort to a general letter like this, which I know is quite tacky. Miss Manners would be appalled. But she doesn't have less than a year to live so what does she know?

By the way, I'm not convinced I have just months to live, just because the statistics and medical evidence say so. I still believe in miracles. But I also believe in being responsible to the people who care about me, so I'm making preparations.

Okay, now that I've gotten all that off my chest, maybe I can go back to bed and try to sleep for an hour before the kids get up.

Chemo Update

The white blood cell booster shot I got yesterday did the trick and my counts were high enough for me to get chemo today. Hooray.

On the downside: the new antibiotic doesn't seem to be working very well. My cough still hasn't improved. I sure hope this doesn't turn into something serious and I die of pneumonia or something like that when I've got cancer looming over me.

Today was my third dose of the new chemo regimen. I'm supposed to have eight and then a PET/CT scan to see if the chemo's working. But I'll have a liver ultrasound after my next dose to see if we can see anything on the liver. It's not a very accurate test, but it's better than waiting for another month to find out whether the cancer is spreading or not.

Tuesday, February 5, 2008

Back Home and Bald

I cut short my trip to Lanta Island and came home three days ago. I missed the kids more than I expected I would, which I blame partly on the fact that this island was crawling with families with young kids. And I thought about my kids every minute I was there because I was writing to them in their journals almost every waking minute. So, thinking about my kids, surrounded by other people's kids... not a good combo.

During my last night on the island, my hair started falling out in the shower. I knew it would fall out with this new chemo I'm getting, but I was still a bit startled by it. There I was standing in the shower, holding huge clumps of my hair in my hands and watching piles of it land on the floor. I decided I wanted to be back home with my family and got on a flight the very next day. Maybe it was a moment of weakness, but I didn't want to have cancer by myself in a hotel room far away from home.

I hadn't expected to find enlightenment of any sort on this solo trip, but while walking on the beach at sunset and looking out to sea, I felt like I should at least TRY to think big, deep thoughts. The best I could do was ponder the looming threat of death and why I'm so strangely calm about it. If I were religious, people would probably attribute my courage and calm to my faith. But since I don't have religion, I can only attribute my attitude toward cancer and death to my faith in myself and the people around me. That works pretty well for me.

Chemo update: I went in for my weekly chemo today but my blood counts were too low, so I was given a G-CSF shot to boost my white blood cell count and sent home. I'll go back tomorrow to try again. I've also started on a new antibiotic for my chest infection because my cough isn't getting any better. So, I'm in holding pattern until tomorrow.