Update

I know that it's been a few days since I last posted an update, but I have been trying to keep myself busy and preoccupied and it's obviously been working! :)

For the most part, I am feeling much better physically now that my treatment has stopped. My stomach cramps are completely gone and my appetite is back, which helps me to not feel so depleted. I still feel incredibly tired, but am able to actually get by some days without a nap. I have also started exercising again (albeit slowly), which is incredibly therapeutic for me.

The bad news is that I am also feeling some of the effects of radiation more intensely now than I did during treatment. Suffice it to say that my insides are feeling a bit raw and sore. Plus, I have lost almost all taste in my mouth, which is a huge bummer since I crave certain foods but they are completely unsatisfying when I cannot taste them. The nurse told me that the first 10 days after treatment are the worst and then my body will start to heal and feel better. I am not in any hurry, though....In a weird way, the fact that I am having really strong symptoms is a GOOD thing. I definitely felt a bit panicked when the treatment first ended ("But Doctor, I am not crawling yet...how can you be stopping the treatments??"), and so having these aches and pains helps me to remember that the radiation and chemo are still doing their job.

But unfortunately, while the physical symptoms have gotten to be more manageable, the emotional symptoms have definitely gotten harder. I have more time on my hands now that I don't go into the doctor every day and am not napping as often, and time is not a good thing to have in my situation. Time is what enables my mind to wander, and sometimes my mind wanders down paths that are incredibly dark and scary. For all that I have been through in life, I have never experienced anything as stressful and overwhelming as having cancer and so I definitely feel "out of my league" in terms of having the right coping skills to deal with the multitude of emotions that come with the territory. Because of this, I went to see a therapist today who specializes in oncology. It was really helpful and I think that I will keep seeing her at least until my upcoming CT/PET scan and my surgery. Hopefully, she will be able to teach me some ways to navigate through these difficult times without completely falling apart, because there are definitely moments when I feel like that is what is going to happen.

So overall, I guess I am doing okay. Not great, but okay. I just try to take things day by day, moment by moment.

My Supporters!

For those of you who read the blog comments as closely as you read my blog postings, you will undoubtedly be familiar with the name "Carol" (aka "Carol and clan"). Carol is my father's cousin and she is in the photo above on the left. Carol has been a wonderful source of love and support to me, Pete and the boys ever since she learned of my news and so I am thrilled to have a picture of her to post on my blog!!!

Sitting next to Carol in the photo above is her mom, my Great-Aunt Jo. Aunt Jo is 96-years-old and has the most wonderful sense of humor and love of life that you will ever encounter. We all feel blessed to have her as our role model for aging gracefully! And so between Aunt Jo and my Grandma Connie (my mother's mom), who is 90-years-old and equally feisty and strong, I know for a fact that I inherited some super-duper kick-ass genes that are battling the Bitch like crazy right now!!!

Living in the Moment

There is something so beautiful about the way that children live in the moment. They never think about (much less worry about!) what is going to happen in 5 years, or in a month, or even tomorrow. They focus instead on how they feel right now, right at this moment. And sometimes the moment is good and happy and sometimes it's bad and frustrating, but either way it's real. It's not full of "what if's" and fear, as it is for adults.

I think that this is why I am most at peace when I am with my children these days. They keep me in the moment, which at the end of the day, is really all that any of us are guaranteed.

Pictures

A good friend of mine, Ginna, came up with the fantastic idea of having photos taken of Pete, myself and the boys before I started the chemo and radiation treatment so that we could capture images of our family before life became too crazy. She has a friend, Leigh, who is an incredible photographer and who, after hearing about my diagnosis, offered to do the photo shoot for free. I was completely blown away by the photos that she took and I will be forever grateful to both Ginna and Leigh for capturing these precious moments for us.

If you click on this link, you can view a few of the best photos:
http://share.shutterfly.com/action/welcome?sid=1AbNnDFs3YsXIQ

Once you get on the Shutterfly site, click on "View Pictures" at the bottom of the first page and then click on "View as a Slideshow" on the right-hand side of the second page.

And if you live in the area and want to talk to Leigh about taking photos of your own family, she can be reached at leighjohnsonhouse@yahoo.com.

My Roller-Coaster Ride

I think one of the hardest parts about having cancer is the incredibly unpredictable roller-coaster ride that accompanies the diagnosis. Some days -- like yesterday -- I feel really great. I feel like my body is healthy and strong and completely capable of fighting this cancer. I think of all the people who have beaten cancer (even when it has metastasized) and I think that there is no reason in the world why I can't be one of those people. In fact, there are times that I even think that it's already gone. And so I feel incredibly positive about what the future holds in store, even if my liver is involved (which on days like yesterday, I find hard to believe!) and I feel confident that everything will be fine.

And then, without warning, I have days like today where I am completely overwhelmed by the seriousness and scariness of my diagnosis. I don't really know how or when today started to spiral downward, but it ended with me as a sobbing mess on the couch and Pete trying to offer me whatever advice he could think of. All I kept thinking about was that my children are way too young to lose their mother and that I don't want to die before I get the chance to watch them grow up. Even now -- almost three months into this -- I am still in total disbelief that this is actually my life. I keep thinking this should be a story that I am just reading about...a story that is happening to someone else, not me. How did this happen to me??? How did this become my life???

Chocolate Croissants

I was talking a few weeks ago with my neighbor, Steve, about the advice in my nutrition posting below. Steve shared with me that for the past year or so he and his wife have been trying to slowly move their family toward healthier eating habits (e.g., eating more veggies, fruits, whole grains, natural foods, etc). He and his wife are both doctors and so I am guessing that they have probably treated enough medical issues to realize how important good nutrition is for our bodies. During our conversation, one of the very funny comments that Steve made was "When you make a point of eating the foods that you are supposed to be eating, you don't really need to worry about whether the chocolate croissant at Starbucks has too many carbs." Basically, if you eat natural food of good quality, quantity tends to take care of itself. I laugh to myself every time I think of his comment -- it's oh-so-true!!

Nutritional Advice

I have had soooooo many people ask me about what I am eating these days to get/stay healthy. Luckily, I found a fabulous nutritionist, Sharon, who is affiliated with the cancer center and who knows a ridiculous amount about food and the way that the body processes it. She has given me loads of advice on what to eat or not to eat, but her recommendations can basically be boiled down to three principles:

1) Eat foods that come from the Earth, not from a manufacturing plant. (Yup -- this means NO refined sugars! Darn!! And it also means no more Diet Coke for me -- double darn!!!)
2) The fewer the ingredients on the package AND the more natural the ingredients, the better. This is where "organic" comes in, since whether it's labeled or not, pesticides are an ingredient that we and our families are ingesting.
3) When you sit down to breakfast, lunch or dinner, 75% of what you see on your plate should be fruits and/or vegetables.

These are such simple principles to remember, and since they apply to everyone (cancer or no cancer), I thought I would pass them along. If you want more details than this, shoot me an email and I'll elaborate.

p.s. If you want to learn more about why refined sugar is bad, check out the link below. In particular, note the sentence that reads: "Refined sugar has been stripped of all its nutritional value during processing, resulting in an end product that more resembles a pharmaceutical than a food source." Yuck!! And, by the way, this company makes yum-yum-yummy vegan carrot cake (I had one for my birthday):
http://www.fabesnatural.com/truth_about_sugar.htm.

Pesticides and Cancer

Click on the link below to read a fascinating article about the role that pesticides play in causing cancer (breast cancer, in this case)...

http://www.wcrc.org/articles.htm

My doctors suggest that I have colon cancer because of "genetics", but when I read articles like this I can't help but believe that genetics is only a small piece of a much more complicated puzzle.

There are so many environmental toxins that we, as consumers, are not even aware that we are consuming and yet, they are killing us. How do companies get away with this?!? When I was in business school, the most interesting class that I took was one that focused on environmentally- and socially-responsible business. One of the key principles of the class centered around the idea that businesses which are not environmentally and/or socially responsible do not charge the full "long-term cost" for their products. What does this mean? In the case of the article above, the growers of lettuce who choose to use pesticides are able to harvest more produce with each crop than organic farmers can. Because non-organic farmers harvest more with each crop, they can charge less for their produce and still be financially profitable. For example, if it costs the non-organic farmer $100 to harvest his lettuce crop and his work results in 10 bushels of lettuce to sell, he only needs to charge $10/bushel in order to break-even. Any price above that is pure profit! The organic farmer, on the other hand, pays the same $100 to harvest his crop, but he only gets 5 bushels (insects ate the other 5) and so he must charge $20/bushel in order to break-even. At first glance, most consumers would compare the two types of lettuce and say "There is no way I am paying $20/bushel for lettuce when I can get it for $10! That's crazy!! It's just lettuce -- how different can it be?"

But what's missing from the equation above is the "true long-term cost" of eating non-organic produce...the fact that, over time, pesticides have been proven to cause cancer. And so, if the non-organic farmer were forced to charge the "true long-term cost" for his lettuce, he would need to factor in the millions of dollars that are spent by the government each year on cancer research, he would need to add in the costs that each individual cancer patient (like me!) incurs in medical costs and emotional stress, and he would need to factor in the enormous residual impact that his pesticides have on the natural environment around his farm (e.g., in the nearby lakes and streams and in the animals who live in the area). If all of these other-- equally relevant -- costs were factored in to the price of non-organic lettuce, I am betting the cost of organic lettuce would look pretty darn cheap!! But the reality is that, as long as there are consumers who are willing to ignore the real risks associated with pesticides (and preservatives and other environmental toxins) and who are willing to gamble that the two types of lettuce really aren't that different, there will always be companies around who exploit this in the name of short-term profits.

I am sorry that I sound like I am preaching!! It's just that environmentally- and socially-responsible business is something that I have always been incredibly passionate about, but especially now that I have been affected so directly.

Next Steps

Now that Phase I of The Bitch Must Go campaign is over, many people have asked me "What happens next?"

Here is what we know so far:

May 25 -- I have another CT/PET scan done at UCSF. This will be a much more sophisticated test than I had done previously and will actually combine the CT and PET technology into one. This will hopefully allow the liver specialist (Dr Warren) to better understand what the spot is on my liver. I keep telling everyone that it's just a "freckle" (I have lots of them all over my body and I like them because I think they make me look more youthful!) but they still want to double-check!!

June 8th -- My tentative date for surgery. I will have abdominal surgery so that they can take out the main colon tumor and any suspicious pelvic lymph nodes and/or pelvic tissue. If Dr Warren still has any questions about the spot on my liver, he will also do an intra-operative ultrasound of my liver during surgery to get a closer look.

About 6 weeks post surgery (so end of July) -- I begin chemo again (but only chemo this time...no more radiation). The protocol and timing for this chemo is still TBD until the doctors better understand whether there is liver involvement and whether I need additional liver surgery. The impression that we've been given is that this phase of chemo will last about 4-6 months and I'll go in once every other week for an afternoon of treatment, rather than having the continuous pump again.

So that what we know right now... It's all so daunting for me to think about so for now I am just trying to keep myself busy and distracted with eating well, starting to exercise again, and getting lots of rest since these are the only things that I can really control.

Feeling Better Already

It's been 3 days since my first phase of treatment ended and I have to say that I am feeling better already. My stomach cramps are much, much better as is the weird hand/foot symptoms that I had. The only really significant symptom I still have is fatigue, but I am not surprised since this is supposed to last for awhile while my body heals. All of my doctors told me that the radiation will keep working for the next few months, so I am beginning to think that many of my symptoms were due to the chemo, which is kind of a bummer since I will need to do chemo again after surgery. Oh well -- whatever it takes!!!

Anyway, just wanted to let you all know that I am starting to feel better! :)

A Million More Moments

This morning, Luke and I sat on our front porch bench waiting for our neighbor friends to show up (he was walking with them to school). While we were waiting, he started to sing and soon his singing got so loud that I joked that he would wake up the entire neighborhood. Of course, he thought this was hysterical and started singing even louder. In an attempt to quiet him down, I pulled him towards me and pinched his nose closed. This made him crack up and, of course, try to sing even louder (this time with a completely nasal voice!) Soon his little body was completely collapsed against mine, I had my arms wrapped around him while I held tight to his nose, and we were both laughing and laughing.

After our neighbor showed up and I kissed him good-bye and sent him on his way, I walked back into our house and couldn't help but think: God, you can take all my money and all my belongings; you can take everything that I own. But please, God, PLEASE give me my health and please, please, PLEASE give me a million more moments exactly like this!

End of Phase 1

So today is my last day of Phase 1. I have my last radiation treatment at 2:30pm and I go upstairs immediately afterwards to have the chemo pump disconnected. A huge part of me feels like screaming "Hallelujah!" at the top of my lungs. I will be soooo happy to be done with the treatments for awhile and to allow my body to heal. This has been the hardest thing I have ever had to go through and I feel completely exhausted and extremely ready to take a break.

But, at the same time, I can't help but think that it's not like I am simply running a marathon. The stakes of this "race" are so much higher -- in fact, the stakes of this race are as high as they come. After today, I will have had 28 radiation treatments and 38 days of chemo. But how do the doctors know that those are the magical numbers? How do they know that I don't need 30 radiation treatments? Or 50 days of chemo? Supposedly, this is the "standard" treatment schedule for my type of cancer, but I have to believe that my body is stronger than most other patients with this type of cancer. What if that means that my tumor is stronger as well? Maybe the Bitch is not dead yet. What if, while my own body is healing and getting stronger, she is able to do the same?

I am terrified of ending up like White House Press Secretary Tony Snow in a couple years, with cancer lesions showing up in other parts of my body. Given his political position, I am sure that he has had access to excellent medical care. As he was going through his first phase of treatment, I am confident that his doctors did everything they could to ensure that they eliminated all of his cancer. He might even have had 28 radiation treatments and 38 days of chemo, just like me. Or maybe he had even more! But it doesn't matter...it didn't work...his cancer has come back. So what if my treatment doesn't work either? What if 28 and 38 are not enough? What if I shouldn't stop running yet? What if I need to run for another 10 or 20 or 30 days? I am completely exhausted by everything that I have gone through so far, but I would keep going and going if my doctors would let me! I am so incredibly afraid to stop running!!

I don't really know how I will ever get past this fear. I can tuck it safely in the back of my mind most of the time (like when my children are around or when friends come to visit and help to distract me), but it will always be there. And it's such an overwhelming burden to carry.

My Jolt of Love

Today is April 18th -- my last day of treatment. And also the day that my good friend, Carter, is getting married. To be honest, I had forgotten all about Carter's wedding in the haze of my own pain and misery (I'm sorry, Carter!! I am obviously a bit distracted these days!) But I was reminded of her wedding just now in a very surreal way...

Luke is off at school and Kyle just headed to the park with our nanny and so I was settling down for the morning to read through my email. One of the emails was from Beliefnet.com (a spiritual website from which I receive daily prayers, meditations, etc) and today's email was ironically titled "Why I Believe in the Power of Prayer." It was an essay written by a woman who was diagnosed with cancer at the age of 31 and in the essay she writes: "I know that a big part of the reason I’m cancer-free and feeling good right now is because of all the people who closed their eyes and sent blessings, requests, and good vibes my way." At the exact moment that I read that sentence, I felt chills run up and down my whole body. At first, I thought that the chills were because the sentence resonates with me -- I, too, believe that the prayers and blessings and good vibes I am receiving will help me to overcome this cancer. But then suddenly, out of nowhere, I remembered what Carter had written to me a few weeks ago!! She told me that at 9am PST on April 18th, I should feel a "jolt of love" since she was going to have all 200 people at her wedding in London say a prayer for me at that time!! I paused for a second and shook my head in disbelief -- could the chills I just felt have been this "jolt of love"? No way, I thought -- that is completely crazy!! But I couldn't help myself...out of curiosity, I glanced up at the clock. It read 9:04am.

Thank you, Carter! I love you and I wish you all the best!!

My Birthday Surprise

I just wanted to write a quick note to let everyone know that I am doing fine. I know that it's been a couple days since I last wrote anything (and some people have very sweetly contacted us to inquire as to whether I am doing okay given the "silence" on my blog!) but I haven't written only because I have a good friend in town. My 39th birthday was Wednesday and for my birthday present Pete invited my best friend, Lisa, to come visit. She arrived while we were having dinner and I have never been more surprised or happy in my whole life!! Apparently, she and Pete have been planning this for almost a month but I had no idea (although it seems that I was the only one -- even Luke knew! Ha!) It was the best gift that Pete could have given me and he is such an amazing husband to even think of it!! I was feeling completely miserable all day on my birthday -- both physically and emotionally -- but seeing Lisa's smiling face and having her here to keep me laughing and feeling pampered these last few days has been so wonderful.

Anyway, I am now officially sick (so much for skipping the Easter party and church!!) and so have typical cold symptoms to add to my chemo and radiation symptoms. Ugh!! So Lisa and I are pretty much just laying around the house in our pajamas and doing "spa" kind of things (pedicure, massage, etc), so I can't complain too much. Plus, I only have 5 more days to go after this -- WOO HOO!!

In My Next Life...

I want to live my next life backwards. You start out dead and get that out of the way. Then you wake up in an old age home feeling better every day. You get kicked out for being too healthy; go collect your pension; then when you start work, you get a gold watch on your first day. You work years until you are young enough to enjoy your retirement. You drink alcohol, you party, you're generally promiscuous and you get ready for high school. You go to primary school, you become a kid, you play, you have no responsibilities, you become a baby, and then...You spend your last 9 months floating peacefully in luxurious spa-like conditions with central heating, room service on tab, larger quarters every day, and you finish off as an orgasm. I rest my case!

(Reprinted from an email that my mom forwarded to me)

Call Your Senator!! I Just Did!!!

Tomorrow, Wednesday, April 11th, a very important vote is happening in the Senate that can make a difference in the fight against cancer.

S. 5, a bill with bi-partisan support is being debated today and voted on tomorrow that will remove current restrictions on potentially life-saving research.

S. 5, the Stem Cell Research Enhancement Act of 2007, which has already passed in the House of Representatives, will undoubtedly pass in the Senate, just as it did in 2006. The bill needs 67 votes to be veto-proof, meaning, if the President vetoes the legislation as he has done in the past, there will be enough votes to override his veto. It is expected that at least 66 Senators will vote in support. Will your Senators be among them?

Call today to urge them to support S. 5, the Stem Cell Research Enhancement Act of 2007. If you live in California, here are the numbers:

• Senator Boxer at (202) 224-3553
• Senator Feinstein at (202) 224-3841

Tell them:

1. You are a colorectal cancer advocate and a constituent.
2. You urge the Senator to Vote YES on S. 5. (Be very clear to state your support for S. 5, as there is another stem cell bill being voted on that would further limit stem cell research.)

Why is stem cell research important to people living with cancer?

Currently, federal funding for research involving human embryonic stem (ES) cells is limited to research involving those cell lines that were approved by the Bush Administration in August 2001, and scientists receiving federal funds are not allowed to generate additional human ES cell lines. Based on what scientists have learned by studying ES cells in mice, these limits make it unlikely that data obtained with this set of “approved” cell lines can show much benefit to the whole human population. Further, the development of efficient methods to generate new cell lines will likely be necessary if ES cells are to yield successful therapies.

Research on human ES cells has great potential for people living with neurological, degenerative and genetic diseases --but it’s the recent findings on cancer that make us the most hopeful.

Scientists have recently learned that the mechanisms that control cell division and differentiation in ES cells are likely to also regulate cancer stem cells, which means that cancer patients stand to benefit greatly from progress in ES cell research. Unfortunately, this type of research is currently being stymied at the leading research facility in the country: the National Institutes of Health.

Please contact your Senator right away, before the vote happens tomorrow. You can make a difference and help science find a cure for colorectal and other cancers.

A Lot Of Time The Corn Grows Anyway

Here is another excerpt from Kitchen Table Wisdom that I wanted to share because it really touched me when I read it and I have gone back to read it again and again in the past few days. Dr Rachel Naomi Remen writes:

Some years ago I served on the dissertation committee of a woman in the Midwest who was studying spontaneous remission of cancer. Among the people who answered her ad in the paper asking for people who thought they may be had an unusual experience of healing was a farmer who had done exceptionally well despite a dire prognosis. On the phone one evening, she told me about him. She felt his outcome was related to his attitude. "He didn't take it on," she said.

Confused, I asked her if he had denied that he had cancer. No, she said, he had not. He had just taken the same attitude toward his physician's prognosis that he took toward the words of the government soil experts who analyzed his fields. As they were educated men, he respected them and listened carefully as they showed him the findings of their tests and told him that the corn would not grown in this field. He valued their opinions. But, as he told my student, "A lot of time the corn grows anyway."

In my experience, a diagnosis is an opinion and not a prediction. What would it be like if more people allowed for the presence of the unknown, and accepted the words of their medical experts in this same way? The diagnosis is cancer. What that will mean remains to be seen.

Like a diagnosis, a label is an attempt to assert control and manage uncertainty. It may allow us the security and comfort of mental closure and encourage us not to think about things again. But life never comes to a closure, life is a process, even mystery. Life is known only by those who have found a way to be comfortable with change and the unknown. Given the nature of life,, there may be no security, but only adventure.

I really love this story!! I whole-heartedly agree with the farmer...My cancer diagnosis is an opinion, not a prediction. There was nothing black and white about my test results: both biopsies came back benign, my lymph nodes were not as enlarged as is typical with metastatic cancer, the spot on my liver did not "light up", but yet the tumor appeared in the ultrasound to have invaded my colon wall and the fact that they could see the lymph nodes at all during the ultrasound was not a good sign. I think that I am blessed to have some of the best colorectal oncology doctors in the country. Their top-notch educations and vast experience enabled them to quickly assimilate the large amount of nebulous data that my case entailed, and for that I am eternally grateful. But at the end of they day, they are doctors, not magical fortune-tellers. They cannot predict my outcome any better than I can; they can only share their opinion.

In fact, in the first meeting that we ever had with Dr Poen (my radiation oncologist) he admitted this. He said, "Julie, I can tell you exactly what 2007 will look like for you...by the end of this year, you will be cancer-free. What I cannot tell you is what 2008, 2009, or 2010 hold in store. I cannot tell you whether the treatments this year will cure you or whether the cancer will come back. Only time will tell us that."

I have never been very good at dealing with uncertainty. I like to have a sense of control and to know my options in black and white. Lately, though, I have found myself growing slowly more comfortable with the uncertainty of my situation and growing more comfortable with just living each day as it comes. I think this is because -- like the farmer in the story -- I refuse to "take on" my diagnosis as a prediction. While I greatly appreciate all of my doctors' opinions (and I am obviously acting on what they all agree is the appropriate course of action given the diagnosis), I feel in my heart that what eventually happens to me will be because of a multitude of factors that neither my doctors nor I can even see or understand. As I wrote earlier, I think that the things that we know are only a small part of the things that we cannot know.

Some Facts About Cancer

Like most people our age, Pete and I knew practically nothing about cancer before I was diagnosed, which is part of the reason that we were so blindsided by the news!! I feel like we have both had a crash course in oncology these past few weeks and so I thought I would share some of the info that we have learned:

> Cancer is a group of more than 100 different diseases. Cancer occurs when cells become abnormal and keep dividing and forming more cells without control or order. Everyone has cancer cells within their body, but most people's immune systems are strong and healthy enough to recognize these cells as abnormal and destroy them before they become a problem.

> All organs of the body are made up of cells. Normally, cells divide to produce more cells only when the body needs them. This orderly process helps keep us healthy. If cells keep dividing when new cells are not needed, a mass of tissue forms. This mass of extra tissue, called a growth or tumor, can be benign or malignant. Benign tumors are not cancer. They can usually be removed and, in most cases, they do not come back. Most important, cells from benign tumors do not spread to other parts of the body. Benign tumors are rarely a threat to life.

> Malignant tumors are cancer. Cancer cells can invade and damage nearby tissues and organs. Also, cancer cells can break away from a malignant tumor and enter the bloodstream or the lymphatic system. This is how cancer spreads from the original (primary) tumor to form new tumors in other parts of the body. The spread of cancer is called metastasis.

> Most cancers are named for the type of cell or the organ in which they begin. When cancer spreads, the new tumor has the same kind of abnormal cells and the same name as the primary tumor. For example, if lung cancer spreads to the liver, the cancer cells in the liver are lung cancer cells. The disease is called metastatic lung cancer, not liver cancer.

> The current understanding of the causes of cancer is incomplete, but it is clear that cancer is not caused by an injury. And although being infected with certain viruses may increase the risk of some types of cancer, cancer is not contagious. No one can "catch" cancer from another person.

> Ninety percent of cancers develop because of complex interactions between our bodies, our lifestyles, our genetic makeup and our environment. Scientists have discovered different factors that cause cancer. Research shows that tobacco is estimated to cause 30 percent of all cancer deaths, poor diet 35 percent, reproductive and sexual behavior 7 percent, work-related causes 4 percent and the environment itself causes 3 percent.

> Scientists believe that genetic changes, whether inherited or acquired, are the basic cause of cancer. Some scientific theories do suggest that cancer may be a hereditary disease because each individual's make-up may make them more susceptible to certain cancers. About 50 of the more than 120 different types of cancer occasionally run in families.

> Most of the current scientific evidence indicates that a normal cell can become transformed into a cancer cell when certain genes become activated. Recent work in cancer biology concerns the study of oncogenes, a specific gene that participates in changing a normal cell into a cancer cell. It is thought that an oncogene might be present in an inactive form in normal cells and is some way activated to create cancer cells.

> The nutritionist that I am working with talks extensively about how the foods that we eat "activate" certain gene responses. Not surprisingly, vegetables and fruits all work to keep our cells healthy and operating correctly, while foods like meats, dairy and fatty foods all negatively affect our cells natural ability to function properly.

> If you want to assess your own cancer risk for a variety of different cancers, check out this site: www.yourdiseaserisk.harvard.edu
Keep in mind, though, that when I completed the questionnaire for colon cancer, my risk profile came back as "well below average." I guess this is why all of my doctors keep pointing to genetics or "bad luck" as the root cause of my cancer.

Kitchen Table Wisdom

I just finished reading a really, really amazing book. It's called Kitchen Table Wisdom and it was written by a doctor named Rachel Naomi Remen, who ironically lives in a town about 15 minutes from me. It is a collection of incredible short stories about her experience as a doctor in healing people, both physically or emotionally. She has an incredible gift for writing and her stories are so moving. Here is an example:

A human life has seasons much as the earth has seasons, each time with its own particular beauty and power. And gift. By focusing on springtime and summer, we have turned the natural process of life into a process of loss rather than a process of celebration and appreciation. Life is neither linear nor is it stagnant. It is movement from mystery to mystery. Just as a year includes autumn and winter, life includes death, not as an opposite but as an integral part of the way life is made.

The denial of death is the most common way that we edit life. Despite the power of technology to reveal to us the nature of this world, death remains the ultimate unknown, impervious to the prodding finger of science. We might well ask if anything which cannot be addressed in scientific terms is really worthy of our attention. Yet most of the things that give life its depth, meaning and value are impervious to science.

Ever since my diagnosis I have been reading any book that I can get my hands on that might help put death in perspective. I have no intention of letting this cancer be the end of me, but at the same time I cannot deny that having cancer has opened a space in my mind where I think about death. And so I find myself trying to make sense of what death is all about and to understand where -- if anywhere -- death leads. This book is probably the closest that I have come to feeling a sense of peace about death and about life and about the true mystery of both. If you have a chance, you should definitely read it.

Easter Prayer for Renewal

Lord, send me a surprise
One that catches me off guard
and makes me wonder.
Like Easter.

Send me a resurrection
when everything looks dead and buried.
Send me light
when the night seems too long.

Send me spring
when the cold and frozen season
seems endless.

Send me an idea
when my mind is empty.
Send me a thing to do
when I am just waiting around.

Send me a new friend
when I am alone.
Send me peace
when I'm afraid.

Send me a future
when it looks hopeless.
Send me Your resurrection
when I die, Jesus.

- Rev. Dr. Herbert Brokering

Happy Easter!

It's Easter morning and Pete and Luke just headed off to Cindi and Dave Frame's annual Easter egg hunt (these are two of the friends who have been so incredibly helpful to us these past couple months). Over the years their Easter party has turned into quite a production -- I think that they hide something like 500 eggs in their backyard. Unfortunately, Kyle is staying home sick and I am staying home in the hopes that I don't get sick (our friends are expecting about 100 people for the event, which is way too many germs for me at this point). With great sadness, we also decided to skip church this morning. I always love going to church on Easter because it's fun to be part of a community spirit on holidays like this, but also because I want my kids to eventually understand the true meaning of Easter. But Pete and I know from experience that on Easter Sunday our church will be standing room only with wall-to-wall families (or should I say wall-to-wall germs?). I only have a week and a half left of treatment and can't risk getting sick at this point. I feel miserable enough with just chemo symptoms -- I don't want to add to the misery by getting a cold. So I guess that the religion lesson will just need to wait!

Luckily for Luke and Kyle our absence from church did not preclude the Easter bunny from visiting! He brought a few fun toys for the kids and just enough sweets to make the day enjoyable. And then, somehow mysteriously, he also hid all kinds of Easter eggs around our front yard while the kids were busy playing with their toys. Pete and I don't actually know who scattered these eggs in the yard (it wasn't us!), but it was very fun for the boys to discover and it made me cry when I saw them. I think that one of the hardest parts of my treatment is that I feel like I don't have the energy to be a good mom and Easter is a perfect example. If my parents hadn't taken the time this past week to pick up a few toys for the kids, I don't know what I would have done last night as we were pulling together their Easter baskets. I was WAY too tired this week to even think about it!! But thanks to my parents who were thoughtful enough to buy a few toys, and to my in-laws who remembered to send cute cards, and to whomever the mysterious Easter bunny was who left eggs in our yard our kids had a fabulous Easter morning. Like I said before, it takes a village to beat cancer and I am grateful to have such a wonderful village!

So now I am heading off to tuck myself into bed for a nap and to give my body the rest that it needs to beat this cancer! Happy Easter to all!

My Belief In God

My friend, Isae, asked me the other day if I blame God for what I am going through. I told her "No, I don't. I think that God gives life, but I don't think that he takes it away." And I truly believe this. I have never subscribed to the common Catholic belief that there is a "wrath of God." The God that I believe in does not punish people. The God that I believe in gives life and tries to help each of us sustain it. I think that many of the bad things that happen in this world, such as cancer, are because of things that mankind has done to itself (e.g., environmental toxins, pesticides and preservatives in foods, poorly designed products, etc); and the rest of the bad things just happen because life is chaotic and imperfect.

I have always had a vague, comforting belief in God starting from when I was young, despite the fact that I never really attended church growing up. But my real, deep-down, heartfelt belief in God began about 6 years ago when Pete and I were going through all of our struggles to have children. After two years of trying, we ended up doing IVF to get pregnant and were lucky enough to have it work the first try. Forty weeks later we were blessed with a full-term, completely healthy, feisty little boy named Luke. Two years later, when we decided to try again, we foolishly assumed that the process would be just as easy. Unfortunately, we were wrong. We lost 5 babies and had many failed fertility attempts before we were finally blessed with a second child.

How did that whole roller coaster experience help me to believe in God, you might ask? Intuitively, it would seem that the opposite would be true! But the reality is that the experience helped me recognize that there is something completely beautiful and mysterious and unexplainable about how life begins; how a complex human can be created from just an egg and a sperm. Our doctors will tell you that the medical community has made enormous strides in the past 10-15 years in terms of understanding how reproduction works. But they will also tell you that there is so much that they still cannot explain. Why do some embryos look "perfect" under the microscope, but still not turn into babies? Why do some babies, who have no apparent chromosomal abnormalities, not survive? Why do some people pursue fertility treatments unsuccessfully for years and then suddenly get pregnant on their own? These are all questions which we asked time and time again in the years that we struggled to create our family. And all the doctors could tell us was "There is still so much that we cannot explain." I think that the things that we know are only a small part of the things that we cannot know.

Safely tucked away in baby books, we have pictures of both our children when they are a mere 8 cells. I wonder sometimes how they will feel when they are old enough to look at these pictures and realize that they are looking at themselves on Day 3 of their life! Somehow, someway, those tiny microscopic masses of cells knew to continue dividing and each new cell that was created knew exactly what it was suppose to become. In my opinion, the most miraculous part of the whole process happened around Week Five when somehow a "light switch" got turned on and a tiny, tiny flicker of light could suddenly be seen on the ultrasound screen. This was their heartbeat and seeing it brought us to our knees!

How does this happen? How does a mass of dividing cell suddenly transform into something that is living and that can eventually sustain itself? Where does this life force come from? No one knows the true answer, but I guess this is where faith begins. If you believe -- as I do -- that there is a Higher Power somewhere in the universe who is the source of this initial life force, then it's not difficult to carry that belief forward and to believe that this Higher Power is with us throughout our lives.

But what about the babies that we lost? Sadly, we lost all of them many weeks after their hearts started beating. Some might argue that God played a role in that as well, but I don't agree. I believe that the moment that the light switch gets flipped and the heart starts beating, that at that same moment the "life force" switch gets flipped on as well and that this life force is actually the small piece of God that lives within each living being. I think that this life force can sustain us through incredibly difficult circumstances. It keeps us fighting and it keeps us strong despite seemingly insurmountable odds. But sometimes the circumstances are just too difficult to overcome.

I know now that I had cancer at the same time that I was trying to get pregnant (the doctors estimate that the tumor has been growing for 5-7 years -- yikes!). And so I can't help but wonder if maybe this is why I miscarried so many times. Maybe my body was not able to handle the stress of fighting cancer at the same time it was trying to sustain a pregnancy. Or maybe we lost our babies for some other completely unrelated reason. We'll never know. But I don't believe that losing our babies was some sort of punishment from God and, in answer to Isae's question, I also don't believe that the cancer I have now is a punishment. In fact, I believe quite the opposite. I believe that I am not in this fight alone and that the strength and determination and "life force" that propel me forward each day are because there is a part of God that lives in me.

I've Become A Chemo Slug

It's official. I have turned into a chemo slug. I woke up this morning and my mind was saying "Okay, we need to get moving! We need to get the blood circulating -- let's go!" And so I dragged myself out of bed, went upstairs for breakfast, walked Luke to school and then I decided to check email really quick before doing something active. And the next thing I know it's 11am and I am falling asleep at my computer. Now I have no energy for anything and I'm going to curl up and take a nap. Ugh!! I can't wait to have energy back.

My Beautiful Angels

Many people have thoughtfully inquired as to how Luke and Kyle are faring through this whole ordeal, and the answer is that I think that they are doing fabulous!! Kyle is only 19 months old and so he is fairly ego-centric and oblivious. As far as he is concerned, as long as someone is around to feed him, ohh, about every 8 minutes or so and as long as he gets to run around creating mischief and as long as he sees Pete or I every once in awhile during the day for hugs and kisses, he is completely fine. Luke, on the other hand is 5 going on 15, and so is clearly more aware of what is going on. But overall, he seems to be handling things great. His routine hasn't changed much, other than the fact that his grandparents or our nanny now do some of the things (like walking him to school or making his dinner) that I used to do. But I have tried my best to keep our times together as normal as possible, so as far as he knows the medicine is not really doing much of anything to me other than making me a bit more tired. Every so often he'll ask me if the tumor is gone yet and I tell him that it's getting smaller but probably not gone quite yet. And so he makes his hands into tiny little fists and pretends to punch my stomach so that he can knock out the tumor. How can I not LOVE his fiesty little spirit??

Luke did ask me the other night whether people with my kind of cancer ever die. I nearly fell off the couch when he asked me this and the only thing that I could think to say at the moment was "No, sweetie, they don't." Yikes! Nothing like telling your child a flat-out LIE! He then responded, "Well, some cancers cause people to die, though, right?" Where the heck is he learning this stuff?? "Yes," I replied, "some cancers can make people die." I then paused, feeling guilty about my earlier blatant lie and decided to "correct" myself by saying "Actually, Luke, the cancer that I have does make some people die but only if they don't take their medicine or if they don't go to the doctor. That is why it was so important a few weeks ago for Mommy to find the right doctors and get started on my medicine." Luckily, that seemed to appease him and he moved onto the next topic.

Anyway, I mention this because I know that some of you who are reading this blog have interactions with Luke and/or have interactions with children who he interacts with (e.g., his classmates or playdates) and so I ask that you please be careful of what you say when Luke or other children are present, since death and dying are obviously scary and confusing subjects for children this age...and the thought of having to talk about death and dying with my child is scary to me!!

Tennessee Valley Beach

I went for a great hike yesterday with my two nephews, Trevor and Skylar. I took them to my favorite beach (Tennessee Valley Beach) which is about 2 miles from our home. Although my nephews are 13 and 15 and have grown up in the suburbs, they were still completely in awe of the overwhelming beauty and nature that surrounded us. I had a blast watching them chase a snake, scramble up the side of the cliffs, explore the wreckage of an old ship (the "Tennessee") which was grounded on this beach over 100 years ago, and run from waves. Trevor didn't run quite fast enough one time and got his foot soaked by a wave, but we joked that he has now been officially baptized by the Pacific Ocean -- something that I think everyone should do at least once in their lifetime.

What I didn't tell Trevor and Skylar -- and maybe I should have! -- is that every time that I have ever gone to Tennessee Valley Beach and prayed for something, it has come true. It is a magical beach and every time I go there I feel a spiritual presence -- I feel it in the crashing waves, in the far-off horizon, in the dramatic cliffs that surround me, in the hawks that swoop and glide overhead and in the small, colorful birds that land chirping at my feet, and in the hillside full of beautiful wildflowers. And so as Trev and Sky were scrambling around exploring the beach and the hillside behind me, I sat quietly on the bench in this picture and prayed for my body to be strong and healthy and to live a long, happy life.

Chemo Dose Reduced

At yesterday's doctor appointments, Dr Gullion (my chemo oncologist) decided to reduce my dose of chemo. He reviewed all the symptoms that I have been having and said that, in his experience, if he were to give me the same dose again this week that the symptoms would continue to escalate and could potentially spiral out of control. If this were to happen, they would be forced to stop both the radiation and the chemo treatment completely for about 2 weeks to allow my body to re-group and heal. This would obviously not be ideal since it would also give the tumor a chance to re-group and heal as well.

And so, while I was incredibly disappointed -- I kept telling him that my symptoms were still tolerable and that I was not ready to throw in the towel yet -- I also trust his judgment. He also reminded us that he has been giving me a very aggressive dose of chemo so far. So I keep holding on to the fact that, while I might be on a "regular" dose now, at least the Bitch got walloped by a mega dose for more than half of this treatment phase. Only 14 more days (and 11 more radiation treatments) to go!

By the way, the photo above was me at Dr Gullion's office getting my blood pressure taken. :)

Helpful Info

Click on the link below for helpful info I found about assessing your own risk for colorectal cancer. The only caveat that I would make is that the suggested age on the site to begin screening is 50, but I think we can all agree that 38 is not too young to start thinking about getting tested for this disease! With colorectal cancer -- more so than with any other kind of cancer -- the earlier the cancer is detected, the better. This is because colorectal cancer starts as a polyp and if caught early enough, the polyp can simply be removed without ever having to impact the organ. So GO GET TESTED!!!

http://www.fightcolorectalcancer.org/patients/prevention/index.htm

The First Challenging Section

Well, I think that it's safe to say that I have officially entered the "hard part" of chemoradiation treatment. And it SUCKS!! I now have almost every side effect that the doctors warned me about: fatigue, nausea, diarrhea, awful stomach cramps, sore throat, chills, and a crazy one called "hand and foot," which causes my fingers and the bottom of my feet to be tingly, swollen and tender. The bottom of my feet feel like I just finished running a marathon -- they are so sore and tender to walk on. Ugh!!!

Pete keeps reminding me, though, that the fact that I have symptoms is a GOOD thing -- it means that the drugs are doing their job. Yesterday, when I was whining about my symptoms, he very sweetly, but bluntly, responded, "Good! I'm glad you have symptoms. We are right on track!" I love that Pete stays tough with me and that he doesn't let me wallow in self-pity. As far as "justified self-pity" situations go, having cancer has got to rank pretty darn close to the top. But Pete is not one for self-pity, and I love him for that. He holds me while I cry, but then he gently reminds me of all the ways that I am blessed and all the reasons why I can and should be optimistic about my outcome. And we talk about the all the reasons that I am scared, and he helps me realize that I am scaring myself over things that may or may not even come to pass. He has an incredible perspective on life and an incredible ability to stay focused and present, and I love him for this. What I love about Pete more than anything, though, is the fact that he said "we" (as in "we are right on track.") He told me early on that this is OUR fight, not just MY fight. I can see his point -- if it were him who were battling a life-threatening illness, I would feel the same way. We have been together now for so many years and our lives and our souls are so intertwined that I cannot imagine my life or our family without him, and I am sure that he feels the same way. But even though I know that he feels the same way as me, it was still really, really nice to actually hear him say "we." It makes me feel less alone on this crazy journey.

Last night as I laid down to sleep, I tried to put the symptoms I am having in perspective by envisioning myself climbing up my mountain....

I have reached a challenging section of my climb -- it's the first truly difficult pass I have encountered, and unfortunately I have a feeling that it won't be my last. My body is fatigued, my hands and feet are swollen and blistered from the rough terrain, my body doubles over from the cramps in my stomach, and all I want to do is fall to my knees sobbing and beat on the ground in desperation. I pause for a few minutes to scan the vast horizon around me, searching desperately for a sign of some search-and-rescue team that has been sent to save me. I imagine that they are coming to inform me that there has been a huge mistake, to tell me that Luke was right: I don't have cancer. But I know that these are foolish thoughts; merely wishful thinking. There is only one way back up, only one path to follow.

Luckily, though, when I look upwards to the top of my mountain, the skies are crystal clear and I am able to see all of my friends and loved one smiling and cheering for me, and I can see my beautiful children laughing their magical laughs and I hear them yell down to me "Mommy, keep climbing! We love you!", and I see my amazing husband holding tight to my ropes, smiling his huge smile that always brightens my day, and yelling words of encouragement. I am eternally grateful for all the wonderful people who are waiting for me at the top and who are cheering me on as I climb, because I am sure that there are other people who have attempted this climb who were not as fortunate as I. And I am sure that, when some of them came to this same difficult section of the climb, they could not muster the strength to keep going, knowing that there was nothing or no one waiting for them at the top.

So I gently, gingerly place one foot in front of the other and move myself slowly and steadily upward. And as I climb, I search within my own mind to find a place of peaceful quietude where I can go to get away from the pain and fear; a place that will allow me to continue moving through the pain toward the top of this mountain. And when I find that place, I fill it with all of the things in my life which I find beautiful and comforting. And as I snuggle down in that place in my mind, I free my body to do the tremendous job of climbing that I know it is capable of doing.