Two Wrongs Don't Make A Right

Sometimes we want so desperately to set things right, and in doing so we may be stirring up more trouble for ourselves. They say the road to hell is paved with good intentions, right? It's hard to know where to draw the line when pursuing some sense of justice. We want others to understand how badly we've been wronged, but is continually bringing it up the right thing to do? Holding in our grief is not good either because we end up stewing over unresolved confrontations. Anger is poison, but resentment is when we swallow it. Letting bad people hide behind the shroud of polite tolerance is equally wrong. But whose job is it to teach bad people a lesson? Seeking justice is not the same as getting revenge because I believe the former can be achieved more benignly. I am working a little everyday to set things right, but I need to do it the right way.

I spoke before about trying with difficulty to forgive those who have wronged me. I held it in for so long that now I feel an implosion of emotions that I must sort out. Throughout this process, I have actually achieved greater overall calm. But I am still working on the cathartic exercises that will help me achieve true serenity. Peace of mind is precious to us all because we want to live relatively worry-free, to sleep well at night, to keep our integrity intact. Sometimes we are given burdens that seem almost impossible to bear, and yet unbelievably, even more weight is placed upon us. But what doesn't kill you will make you stronger, and I have never believed that more than now. Where my physical strength may have waned, my mind has gotten stronger in order to fill the deficit. In time, I will be restored to full health again and I will draw on that strength in order to raise my sons and go about my life with more purpose than before. I feel a sense of hope and possibility, but first I must call out those who didn't believe me, those who didn't believe in me, and those whose bad behavior towards me was simply unbelievable. But I will purge with care and caution so that I don't blur the line between seeking justice vs. revenge. As my friend LouAnn so wisely put it, "Remember when you are pointing a finger, there may be four fingers pointing right back at you."

Wish List vs. Action Items

The holidays are always a time of reflection, and this year the annual exercise is even more intense for me. Here I am, seven months after diagnosis with a better than could be hoped for outcome. Around Thanksgiving, I encouraged everyone to make a list of things they wanted or still hoped to accomplish if they knew their time in this life would be cut short. If you made a list for yourself, look through it again and determine which ones are wishes for things or events that you are simply waiting for. Then determine which things on that list can only be attained or achieved if you act on it. Therein lies the difference. So many times, we sit and dream about the things we want to happen to us, like winning the lottery, or finding true love, or getting a better job, or having more meaningful relationships with friends and family. But what are we doing towards making those things come true? Did you buy that lotto ticket? Are you putting yourself out there to find a relationship? Are you a positive employee who contributes meaningfully to your company or at least trying to find a career that better suits you? Are you loving and appreciating the people in your life as you should or are you waiting for them to love you first before reciprocating?

When I go to treatment, I see a few of the same smiling faces each time and witness many acts of kindness between nurses and patients, and among the patients themselves. They sometimes talk across the room to each other, tell jokes or stories, find humor in their situation, sincerely wish each other happy holidays, help each other open doors, push IV stands, or settle comfortably in the infusion chairs with blankets and pillows. You'd be surprised to hear how much laughter there is in that busy infusion room, despite each chair being occupied by a cancer patient. I realize that these cancer patients have discovered a little of life's meaning through this experience. That we all face separate battles in life, even if they fall under the same description. Each journey is unique and sometimes battles must be fought individually, but not necessarily alone. Along the way we can find allies who can provide company, comfort and hope. They can be total strangers or the people you know and love dearly.

I usually read a magazine and drink a cup of tea to pass the 3 hours of infusion. But sometimes I put the magazines down and just watch the other patients and try to read their life story in their faces or guess what kind of cancer they have. Other times, I sit and daydream about all the things I hope to accomplish or do with my kids once treatment is finally over. But then I stop and think about how I am actually going to get there without simply waiting on it. It's one thing to wish for something and quite another to do everything necessary to make it happen. So these days, when I make a wish, that wish is accompanied by a mini-list of action items that I need to do in order to make my wish come true. Some of us are lucky enough to have good things fall into our lap, but all of us must realize that we have to actively choose the right place to sit for that to happen. Whether or not you want to accept the idea, we are all the products of our choices in life. Sometimes we make bad choices or mistakes that land us in unpleasant or unhappy situations, but there is always a way out if we find a way to turn things around. Sometimes, it's a lot of work to pull yourself out of a hole that you've dug, but it's better than just lying down and letting yourself get buried. There's so much that you have control over, but it's also a form of taking control to cut your losses when things don't work out.

I wish to be done with cancer for good, I wish for my sons to have a safe and happy childhood, I wish things to be better for friends and family who are suffering poor health or misfortunes of their own. But beyond simply wishing for these things, I will do whatever I can and contribute as much as I am able in order to better my own lot in life as well as those for whom I love. Our health and happiness are inextricably linked, so when things are going good for you, please help others who are in a less fortunate place. It's all a part of finding allies, comfort and hope as I mentioned before.

Turn those wishes into action items to give them a better chance of coming true....

The Incredible Lightness of Being

The Incredible Lightness of Being. This phrase holds my mind captive. It's not to be confused with the book and movie called, "The Unbearable Lightness of Being." What the incredible lightness of being represents to me is a sudden, transient sensation of joy in the life, free from want or worry. A cataclysmic explosion of happiness and contentment that dissipates quickly, but leaves a singular sensation of life's sweetness distilled into a fleeting moment. Throughout this experience, I have been blessed with many such moments, and those are the ones I am throwing my concentration on so that I can harness the good energy derived from their enjoyment.

When worry keeps me up at night, I could look into the sleeping faces of my little boys and see peace and innocence. If only we could only borrow a bit of these precious qualities from our children, our adult lives might be better lived. I remember lying in the grass under my dad's immense cedar tree in the backyard and staring up at a cloud-free blue sky; warm October sunshine penetrating my skin and driving out the chill in my bones. For a few peaceful moments, the pain in my body simply didn't register. The clear sky seen through tangles of fragrant cedar branches while lying still on my back gave me a sensation of falling up into the universe. It's the same feeling I experienced while watching a meteor shower from my sleeping bag when was just a kid. I stared so long at the starry sky that I felt as if I was swirling up, up into the cosmos. I felt light as air and part of the bigger universe, no longer confined to my corner of the world. I've heard Spencer laughing in his sleep, and Rowan sighing very contentedly. It makes me wonder what 2-year olds dream about when they are sleeping.

Watching Rowan and Spencer laugh while running wildly through water fountains at Great Wolf Lodge, or bouncing maniacally at Jump Planet, or riding their Spider-Man trikes fast down the driveway at Ong Ngoai's (grandpa's) house makes me want to bottle the very essence of childhood joy. When was the last time you experienced that kind of sheer, unadulterated happiness yourself? Those who have children can live vicariously through them, but think hard on your own "lightness of being" and zero in on the moment it last happened for you. Is life a series of these cataclysmic moments of intense happiness strung together between episodes of dullness or tragedy? Instead of dwelling on all the events in our lives that bring us down, it might be possible to meditate only on those that have brought us perfect contentment in order to supply our soul with the food it needs to generate good energy. Just as we need to detoxify our bodies, we need to detoxify our minds of the negativity that serves only to waste space and time that could instead be filled with more joy. It's easier said than done when modern life stresses us out so much. But learning to purge anger, fear, worry, and hate from our hearts and minds is just as important as learning to take care of your bodily health.

One of the hardest things for me to do right now is to try to find forgiveness for those who have wronged me. I'm not talking about shaking hands and making up. I mean the true kind of forgiveness that only the heart can grant in order to replace anger and resentment with peace and serenity. There is plenty of anger there at those who have seriously let me down, fear of painful medical procedures that must be endured, worry over finances and bills, and hate of terrorists, bigots, racists, real-life pirates, stampeding shoppers, gun-toting gangsters at the malls. So much in life to weigh us down, making forgiveness more and more of a precious commodity. But forgive I must if I wish to be unencumbered of much of the negativity that helped feed my disease. For now, I can only work on it a little bit each day because it's hard to undo a lifetime's worth. In order to shift off some of the weight that held me down, I must concentrate on those moments of incredible lightness of being that made it possible for me to fall up into the sky.

The World Through Cancer Goggles

A brush with your own mortality tends to lend more focus and clarity to your world view. Cancer heightens our awareness of the life around us, and forces us to see people and things for who and what they are, both good and bad. It presents several contradictions in terms. Cancer patients become more kind, and yet more fierce too because our survival instincts kick in. We approach things more gently, but we also reserve the right to be assertive so that others hear our true voice. I have always been passive aggressive in dealing with unpleasant people in my life, but now I have even less tolerance for ridiculous or negative people who don't possess the capacity to shine any light into my life. When I stop to consider how many loved ones and kind friends I've lost to cancer, it makes me less inclined to spend any time tolerating those who detract from, rather than enhance, the quality of my life. Whether people fall out or are forced out from your life, it's your prerogative to vet each and every one of them. Cancer tends to help with the vetting process. Those who love you will put forth the effort, others will simply be absent.

Take a moment to count how many times cancer has crossed your path, either personally or through a loved one. Consider how you handled yourself in either scenario. We hear the word cancer so often, yet if it's not happening to us then it's easy to fall into a mode of fear, sympathy, action or inaction as suits our character. There are those who are sympathetic, but feel guilty that they can't do more to help, those who do too much as a means of coping with the diagnosis, and those who feel so fearful and awkward and don't know what to say, so they do nothing at all. Unfortunately, I have had too much experience in cancer care. Even when I didn't know what to say to a dying person, I have sat by their bedside in order to provide what company and comfort I could. I visited my friend Walter in the hospital when he had pancreatic cancer and simply let him tell me jokes or stories of his youth. He was a wonderful older gentleman who used to work as a door greeter at Target with me, and knowing that I got to spend some time with him before he passed keeps him in my heart. He had a roomful of people at his funeral who never once bothered to visit him while he was still alive.

I also spent some time with my friend Katalin before she, too, died of cancer. She hid her illness, so there was little time to thank her for her friendship. She could no longer speak audibly, but because she could still hear me, I made a point to tell her how good and kind she had always been to me. And of course, there was my mom. A mother's lifetime cut short, and a daughter's lifeline to the past that is forever severed. All I have left are a few stories of her girlhood in Vietnam, some photos and memories, and many unrealized dreams of her as a grandmother to my twin sons.

My beautiful friend Cherrymae found out this week that her father has a tumor in his lung, but he is staying strong for his family. She and her husband have been tremendously supportive of me during my illness, and to hear that they now have to face this news just breaks my heart. But just as they have been there for me, I pledge to support and comfort them as much as I am able. Also, I listened in disbelief this morning as my uncle recounted how my cousin lost his young wife to cancer just over a year ago. She was only 33 years old and had two miscarriages before they discovered that cancer was the reason she kept losing her babies. Although I only met her once, I feel blessed to have known her face and shared a meal with the woman whom my cousin loved so much.

There is much amiss in the world right now, but also much to be thankful for if we only dig deep. This year has undoubtedly been one of my worst, and so many of my friends and loved ones are suffering from a variety of illnesses or misfortunes themselves. Yet from every tragedy new hope emerges. My family has never been closer, and I know that we will always love and take care of each other in times of crisis. I love my sons more fiercely because the thought that I could have lost a lifetime with them still pinches my heart. So many of my true friends have come through for me, and I will forever be thankful to have seen their kind hearts and good character in action. No matter how often the visits, how small the gesture, how quick the phone call, how short the e-mail, every little bit of kindness is appreciated by the cancer patient. Consider how you would want to be treated if you had cancer, and think about who in your life will there for you if you do. Count me among those who will be there for you.

Make a List

As Thanksgiving approaches, what are you thankful for besides the anticipation of a turkey dinner? For all of us, our days are numbered-- we just don't know what that number is. So if you knew you only had 10 years left, what would you do with those years? What if it was only 5 years? If you had a "Bucket List", which 'to do' items would survive the cut if your time remaining was half of what you expected? Most of us ramble on in our daily routines of quiet desperation. We tolerate negative people in our lives because we never consider that we might choose to exclude them and be unencumbered of their bad energy. I started making a list of all the things I still want to do, especially with my kids. What does your list look like? Or do you assume there will always be enough time?

As I go another round of chemo, I recognize many faces from the last treatment. Most likely, these patients are on the same schedule so I will see them in succeeding weeks in the infusion room. Even though these familiar faces look tired, I know that each of them wants to be saved, and they will approach life much differently than before their diagnosis. Each cancer patient becomes just a little kinder, and yet more fierce too. We all sit in this infusion room together, each with a separate life, yet bound by this common experience. One patient is a favorite with the nurses. He cracks jokes and makes everyone laugh. Another seems timid and self-conscious about her wig. She speaks quietly and looks lost in her thoughts until her husband arrives with a hot cup of coffee for her. There's the man with a laptop, week after week, with no one accompanying him to treatment. Another man is snoring intensely in his corner chair, mouth open. We all pretend we don't hear it. We are all doing our time in treatment so that we can someday be finished and resume our lives, hopefully with the gratitude and energy to make it better than before.

Most of you will not ever have to experience this, so I hope that you choose to make the most of the time given to you. Be thankful for your health, your family, your true friends, a roof over your head, a hot meal to eat. Take time to nurture your dreams and make sure they come true. Fight for what you want out of life, even if it scares you to take the first step. There is a line from the play, "A Raisin in the Sun", that sums up all our fears and ambitions, "Please God, don't let my dreams die inside of me." In the week leading up to Thanksgiving, sit down and make your 10-year list and then make your 5-year list. It will help clarify your life priorities. Share that list with your family and friends when you all sit down to dinner together. Above all else, be thankful.

Crisis = Danger + Opportunity

I got through my first round of adjuvant chemo none worse for the wear. Fearing the worst, the side effects were quite manageable. My surgical incision has healed nicely and I've been able to resume some physical activities such as taking longer walks with my kids. The chemo may have a cumulative effect with each subsequent treatment, but the best preparation is knowledge and management now that I know what to expect.

The next task at hand is to better manage my emotional health. Stress, grief, worry affect us all and can contribute to disease as much as a poor diet or genetic factors. My belief is that my cure has either already happened or is imminent, so now I can focus on healing my inner self. I've been reading several cancer survivor memoirs that have galvanized me into taking a whole approach to getting well. I've changed my diet, my exercise habits, but I still need to get to a place where stress and worry can't hound me. I'm sure there are those out there who don't understand why I can't be more positive-thinking, why I've been so sensitive and fragile emotionally even as I emerged into recovery.

For those of you who are wondering, who don't already know, I've been battling the dual evils of cancer and divorce. For six years, I've mostly hidden the fact that I've been married to an incorrigible alcoholic. It took the onset of my disease to realize the nature of his disease. Up until now, only those closest to me understand why there has been no mention of my husband on this blog, why there are no pictures of him, why he is persona non grata in my cancer experience. Some of you have been able to read between the lines. For others, the news is stunning. This entire journey would have been a completely different experience if I had been sustained by a reliable and supportive partner throughout. But that wasn't the case.

Even during during treatment, even as I try to move on, he is there at every turn making my life a living hell. Now you understand why I've been fighting so hard to get better-- so I can protect my kids from a life with an alcoholic. I've received amazing support from my own family and friends. There are others who have reacted to his drinking and the subsequent destruction of our family as a seeming matter of indifference to them. They even deny there is a problem and have sat drinking and commiserating with him-- enabling the alcoholic. These negative persons stood by, helpless they claim, even as they witnessed alcohol and emotional abuse in our house or knew about his transgressions. They did nothing to stop it or to help me, and I had to finally confess to my family and friends the extent of this dirty secret, immediately on the heels of announcing my cancer diagnosis.

Why say something now? Because in order to heal fully, body and mind, I need light and resonance in my life instead of dark, secret corners. In the memoir I'm reading, "Anti-Cancer, A New Way of Life", it is mentioned that the Chinese symbol for 'crisis' are the combined characters of 'danger' and 'opportunity'. That is where I see myself in my journey. At this point, I must pull myself and my children out of danger so that we may have the opportunity to always be safe and enjoy a better life than we've had up until now. My prognosis is excellent, and surviving both cancer and divorce will help me to emerge not only as a better person, but as the best mother I can be for my children so that they will always learn how to turn a dangerous crisis into opportunity.

Another Round of Chemo

Day 4 of treatment and I'm overcome by nausea. Wednesday was Day 1 and I dragged myself to the infusion room at Overlake to get hooked up to a chemo pump for my first round of FOLFOX (which contains 5FU, Leucovorin, and Oxaliplatin). After almost 4 months since the end of my last chemo treatment, I found that everyone remembered my name and even asked about the twins. The oncology nurses explain that they remember me because I am the young mother with twin boys and cancer. As I settle myself into the infusion chair and have the inch-long needle inserted into my portacath, I scan the crowded room and see many faces, all over 50 years of age, all tired and seemingly resigned to their disease. But like me, I know that they are fighting fiercely even beneath the facade of fatigue. I settle in with several magazines, a knit blanket and a cup of Earl Grey tea to pass the time during the 3 hour infusion of chemo.

As the poison spread through me, so did the dread. I remembered all the terrible side effects and symptoms from just 4 short months ago and did not relish the thought of reliving them. But this time there wouldn't be radiation to contend with as well, so no third degree burns on top of the fatigue and nausea. I got up twice to use the bathroom because there were so many liquids coursing through my body, so I dragged my IV stand with me back and forth, unplugging and replugging the stand every time I got up. As I passed the other infusion chairs, I saw patients reading, scanning laptops, sleeping, talking with relatives who sat with them the entire time. Every single chair was filled; there was so much cancer in this room alone.

At the end of three hours, I was released from my temporary confinement to drive myself home. The heavy metals in the chemo already sensed the cold air and caused my fingertips and lips to feel pricked by thousands of little needles. The side effect is called neuropathy because of the nerve damage that the oxaliplatin causes. I quickly tucked my hands into my jacket and pursed my lips to get rid of the uncomfortable sensation. Later, I would learn that even a sip of cold water would constrict my throat and make it feel as if I was swallowing a shard of glass. Running my hands under the faucet or reaching into the fridge intensified the painfully prickly sensation in my fingers. Day 2 and Day 3 passed without too much incident at my sister's condo where I stayed until I return to the hospital to have the continuous pump disconnected. I have 14 days to rest until the next treatment cycle. I have 7 more treatments after this one.

And now, the nausea makes it difficult to enjoy food and water and I am losing weight again. Everything has a metallic aftertaste, sometimes making plain water taste savory. I took the anti-nausea medication the doctor prescribed but found that it literally knocks you out as a means of managing your side effects, so I only take it at night. I tell myself I can do this, that I need to do this. But a part of me can't fully enjoy life right now, as much as I really want to. Certainly happy to be alive at all, yet the quality of life could be better for sure. I am keeping my eyes on the light at the end of the tunnel, but there always seems to be another tunnel. I just want to come out on the other side.

The Present

I don't know why, but it's always been hard for me to live in the present. I tend to dwell on the past a lot, both good and bad. It's my way of sorting out how the hell I got to where I am. So many bad things have happened in my life that sometimes I wonder if I was just born under a very unlucky star. Come to think of it, my astrological sign is Cancer. Regret is a double-edged sword, and I've been cut both ways. So many choices I wish I could rewind and do over. So many others I wish I had taken a chance on. The hopeful side of me also daydreams of futures that never quite materialize. We all want so desperately for things to work out just right, to get the things we want, to love fully, and to experience complete happiness. They say the present is a gift, and it must be enjoyed accordingly.

Friends and family are always asking what they can do to help me right now. All I want is for my loved ones to be present for me. That doesn't mean being with me everyday-- being present means understanding where I am through this experience and showing compassion and empathy in those moments when I am most in need. There have been times when I've been faced with someone's physical presence, but their emotional absence. It's the kind of scenario that begets a greater sense of loneliness and isolation for the person facing cancer. Thinking of this makes me wonder again if I was truly present for my mom during her illness. Was my presence enough or should I have been more present? Even caregivers are susceptible to distractions since cancer is only part-time for them, although it is full-time for the patient. My older blog posts showcased some optimism and even a little cheerfulness-- both of which are in scant supply these days after 6 months of getting physically and emotionally pummeled by all the joylessness that is cancer. But I don't want to be overcome by thoughts of self-pity, which can easily seduce the weary mind. I want very much to enjoy the present, and a lot of that joy comes from being with my sons. Without them, this experience would be even more bleak.

Precisely because of them, I have made the decision to go ahead with the adjuvant chemotherapy. If I wasn't a mother, maybe I would have taken the chance of throwing off the chemo and going on with my life under the assumption that I'm fully cured. The risk would have been mine alone to bear. They say you have a choice, but what kind of choice is it when you have the proverbial gun to your head. But I need the guarantee for their sake. As much as I will really dread walking into that infusion room on Wednesday to get hooked up for another round of chemo, I will do it because hopefully it will put a period at the end of this cancer instead of a question mark. If all goes well, cancer will be something in my past and I will have secured a happier future for myself and my sons. Until then, I will do my best to own the present and live in it to the fullest of my ability.

The Zoo As Life

This past Saturday, my sisters Nina and Diane and I bundled up the twins in their Halloween costumes and played all afternoon at Woodland Park Zoo. It was one of those crisp, lush autumn days that infuse you with life and energy because the sunshine is glorious but you still need a jacket. Spencer wore his monkey suit and Rowan wore his cheetah outfit, which we later learned at the zoo was more of a jaguar instead. I have to say the boys were incredibly adorable in their costumes, and the employees even joked that "some of the animals got loose". For three carefree hours, I walked among the throng of "normal" people and my kids got a day away to be wild and run amok on the zoo grounds. I relished my own freedom to enjoy life again, however briefly, without the cloud of worry and sickness over me as I basked in the sun. The boys are just beginning to understand the importance of being free to run, jump, play and not be confined. I don't know if they understood that concept relative to the animals, but they appreciated it for themselves. We looked in many exhibits, but most of the animals had their backs turned to the crowd as if they were weary of being stared at all day.

Coming out of my illness, I battled with a kind of anxiety every time I walked into a crowd. It's hard to explain the feeling, but it's a lot like feeling exposed and wanting to melt into the scenery in order to avoid any real interaction with strangers. For what seems like a long time, I've been in this cocoon of family, friends, and doctors. Meeting strangers prompted me to two extremes--either appearing aloof and distant as a means of hiding my illness or giving people too much information and not being able to stop myself. On some days, cancer is the big pink elephant in the room and on others it's a thing I hide in my pocket. I'm trying to develop more confidence in public, but it's slow going all the way. Sometimes, I feel like I'm the one behind the glass with people looking in at me. I want to be able to look at out at the world, but sometimes I don't know if that glass wall is protecting me or imprisoning me.

I had my second opinion appointment at Seattle Cancer Care Alliance with Dr. Whiting today. He reviewed my entire medical record and spent almost two hours going over all the details with me, as well as giving me his own recommendation. Evidently, he is in consensus with Dr. Crossland's findings and feels that I should get the adjuvant chemotherapy because the standards of cancer care dictate that a full six months of chemo is the most effective at ensuring that all of the cancer is fully eradicated. Since I had to have neojuvant chemoradiation in order to make the surgical procedure more manageable, it was impossible to accurately stage me prior to surgery.

There's no way of knowing for sure, and therein lies the dilemma regarding this decision. Only 9 lymph nodes were found, but doctors usually like to see 12 to 14 nodes to be more certain that no metastasis has occurred. So, Dr. Whiting said that if I opted for the adjuvant chemo then I would have to endure 4 more months of discomfort in order to be certain that we got it all but I could live a normal span of life without recurrence of the cancer. That's entirely the goal behind the adjuvant chemo.

As much as I wanted to be done, I have to face the reality of my situation and do what I must to ensure that I will be around for my sons. I want as many years with them as I can have, and if the price of those years is only 4 months then that is what I will pay. Even though the odds are in my favor, I can't risk a recurrence because I never want to go through this terrible experience again. In order to preserve my health, I must remain in confinement for a little longer if I choose to undergo additional treatment. Our perfect day at the zoo was a blessing because it gave me a sense of freedom. But a good day at the zoo depends on which side of the glass you find yourself.

Fill My Head and Search My Heart.

If only I could keep worry away. The past few days have been spent in wondering how all this will play out. Just when I felt like I could finally accept the good news given to me after surgery, I am faced with a tough decision regarding adjuvant chemotherapy. Despair is the absence of hope and a lack of control over the circumstances. So, I must summon all the hope I can find and regain control over the situation. The final decision is mine after all, and I will seek the best medical counsel so that I can at least make an informed one.

Currently, there are two camps. The first advocates an aggressive approach to curing disease by undergoing an additional 4 months of high-dose chemotherapy. The problem is that this treatment regimen is not being recommended to treat known or proven disease, but as "insurance" against possible, residual disease post-surgery. This involves pumping my body full of what amounts to systemic poison since the FOLFOX4 chemo cocktail to be prescribed is full of heavy metals such as platinum. The toxicity of this chemotherapy will again completely wreck my body and suppress my immune system, making me vulnerable during the dangerous winter months and flu season. Further, I may be undergoing the chemo while totally healthy and free of disease-- there's no way to know for sure since we are talking about possible microscopic metastases only. Also, this would require that I keep the ileostomy bag for that much longer since I can't have the operation to reverse it while undergoing chemotherapy. So instead of having it for only 3 months, I would have to wear the bag for what would amount to almost 6 months. This is the aggressive approach to standard cancer care.

The second camp figures that neojuvant chemoradiation (the two months I already had prior to my operation) and the surgical re-section of my colon have completely cured me based on the clinical pathology report. The surgeon found 9 lymph nodes from the 14cm section he removed and none of them appeared to be involved, which is really good news. Following the surgery to reverse the ileostomy in a few months, I should hopefully be restored to normal function and health to enjoy a quality of life very similar to what I had prior to diagnosis of the disease. Of course this is the most desired outcome, but I really want to make an informed decision that I can live with in every sense of the word. It's a very calculated risk, but any additional chemo that I choose now may not necessarily prevent a new, primary cancer from developing in another section of my colon or elsewhere in my pelvis. So that being the case, I would rather skip the chemo and rely on annual screenings for any new signs of disease. That way, I can enjoy my restored health and be vigilant against any new threats to my health without unnecessarily subjecting my body to another round of high-dose chemo.

I have an appointment with two doctors at Seattle Cancer Care Alliance on Tuesday the 28th. SCCA is affiliated with Fred Hutchison Cancer Research Center, UW Medical Center, and Seattle Children's Hospital. They have been sent my complete medical records from Overlake Hospital and will review them in their entirety before discussing my case and my options. If there is a consensus among the doctors that I need the adjuvant chemo, and that the benefits will greatly outweigh the risks, then I will make the tough decision and do what is necessary. However, if the evidence suggests that the additional chemo will provide only marginal benefit while putting me at risk for continued illness or new disease, then I feel strongly enough about it to reject adjuvant chemo and take my chances-- which are actually in my favor.

If the clinical pathology report and staging are correct, then my chances of survival after 5 years is 91%. With the chemo, that number would only improve to 93%. While it's true that such statistics are more significant for someone in their 30s than someone in their 60s, the 2% margin is something I can forgo in order to avoid additional chemo. Unfortunately, cancer is a dark cloud we must all live under. Everyday, I still think of and say a prayer for my friends who have a family member undergoing cancer treatment (Alieke, Steve, Monica, Rebecca, Edith, Joni) and for those who lost a loved one too (Gina, Paul, my cousins). My empathy runs deep and my compassion for their plight is genuine. No one wants to be faced with this decision. There isn't really a "right" choice. So I will continue to do the research, consult with doctors, and discuss it all with my family. The only way I can decide what's right for me is to fill my head and search my heart.

The Serenity Prayer

God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Speed Bump On The Road to Recovery

My road to recovery hit another speed bump. I had a follow-up appointment with my oncologist, Dr. Crossland, today. She was forced to discuss a very difficult matter with me-- adjuvant chemo (which means additional chemo after surgery). We went over the success of the surgery and the favorable pathology report again, but she reminded me that I only had two months' worth of chemotherapy and radiation prior to surgery. Standards of cancer treatment dictate that a full six months' worth of chemotherapy is necessary in order to ensure that any potential undetected, microscopic metastasis of the cancer are eradicated as well. The surgeon removed a 14cm section of my colon, along with 9 lymph nodes (none of which were involved), and they had found only 1mm of cancer left in the tissue that was removed. Based on the clinical data, my cancer was staged as T2N0. Which means that the cancer did penetrate into the tissue lining of the colon but not beyond, and there did not appear to be any lymph node involvement. That makes me either a high risk Stage 2 or possible Stage 3. We would all like to hope that I am fully-cured of the cancer, but Dr. Crossland is making sure that I am aware of the residual risk factors.

The dilemma for me is whether I can decide to take 4 more months of systemic poison just in case there might be more cancer, or should I assume that I am fully cured based on the clinical data alone? As accurate as CAT scans are and as good as my medical team is, she said it's possible that a microscopic metastasis might have occurred, which could cause a new cancer growth elsewhere in my colon or in another organ. Chemo drugs are literally poison, and it kills cells and tissue in the body indiscriminately. It does not distinguish between healthy cells or cancerous cells. It kills them both, and it's dosed in such amounts as not to kill the patient first. That is why the skin on my hands and feet were freckled and peeled, why I developed sores on my lips and in my mouth, why I felt nauseated and was constantly fatigued.

If I choose to undergo adjuvant chemo, I may be unnecessarily subjecting my body to 4 more months of poison when I might be perfectly healthy and cancer-free. On the other hand, if I don't do it, then I am taking a calculated risk too. I know the choice may seem obvious, but is it? The heavy metals in the chemo drugs have been known to settle in the body and cause other primary cancers years down the road. If I no longer have cancer now, I might potentially be setting myself up for it again unnecessarily. Damned if you do, damned if you don't. I am working on getting a second opinion from Seattle Cancer Care Alliance as well. I have one month to decide either way. I had very much hoped that this would end with the good news I received in the hospital, but now it seems like it will end with a question mark.....

A Lesson in Failure

Yesterday, the most horrific thing happened. We were at a pumpkin farm with the kids when the inevitable happened- my ileostomy bag failed for the very first time. The ostomy nurse warned me that it can happen sometimes, and I read about a real life experience in the cancer memoir I read over the summer. Neither prepared me for the real thing which was beyond awful. It was only my fourth outing from the house in three weeks, two of which were doctor's appointments. It has been an ordeal learning the confidence again to leave the house with this thing, and then to have this traumatic event happen was a realization of my worst fears. Kind of like taking one step forward and two steps back. I had remained mostly calm in the beginning, but of course the situation deteriorated fast and I simply hit a breaking point which reduced me to tears. Once again, I was forced to contend with how I was making others feel when I had not yet even mastered my own feelings. I was made to feel like I was upsetting others during an episode of profound personal embarrassment and discomfort. Not only had my bag failed, I failed in the way I handled it, and others failed me when I sought comfort. When I needed empathy and compassion, I was met instead with cold and distance.

Although the cancer has been treated, I have not returned to normalcy and my recovery involves a lot of complex emotions that the stoicism of my earlier days had not fully addressed. It made me want to scream, "Wouldn't you be freaking out right now if this were happening to you??!" Being in this situation makes me feel every slight by others more keenly. Hurts and disappointments effected by others, however unintended, are perceived as insensitivity and lack of understanding of how raw and open my wounds are right now,literally and figuratively. Maybe everyone is tired of my cancer and of dealing with the wreck that is me right now-- I don't blame them one bit. Perhaps they feel as if their part of the journey with me has ended and they want to get off at the very next exit. But you can only imagine how I feel about it myself. Every single day of the past 5 months, I wish that this experience was done and over with so that I could just move on and return to "normal" life. I wish that more than anything else. I'm tired of being tired, tired of the pain, and tired of not being able to do all the normal things that a healthy 35 year old would otherwise be able to do. There is an absolute limit to how much one can "stay positive" under the circumstances, and adding in the component of not having a supportive partner through this experience makes me lean on others all the more. So when they let you down, you feel as if the sky is falling and the ground is crumbling. I know it all sounds overly dramatic, but how else can I possibly communicate and adequately describe the sum of my feelings right now? It's like trying to mop up a wave of emotions once they've spilled onto the floor.

Sometimes I ask myself why I'm exposing myself this way on this blog. Why am I opening up the most sensitive and embarrassing episodes to scrutiny? And then I realize that this blog is my coping mechanism. When others need me to be strong, I can always come back to this in my weakest moments. When I can't sleep for worry or when I'm intensely angry over all this, I return to the keyboard to unload. When I'm afraid to say things out loud or tell people just how much I'm hurting because I don't want to scare or burden them, I can always comfort myself and achieve a kind of catharsis through this memoir. At times, this journal is an open letter to those I love. At other times, it's my personal diary. I can't worry over what others will take from this or how they will judge me. I can't censor my own experience in order to ensure others are comfortable. It's a way for me to release all the thoughts and emotions that would be otherwise be "socially unacceptable" to share in person. As I am wont to say, "It is what it is." If I go back and read this in a year, I want to be able to say that I didn't just remember the straight facts about my cancer experience. I need to remember all the excruciating layers of it so that I won't forget the lessons that I hope to take away from it.

Three Seasons

I looked at myself in the mirror the other day, somewhat appalled at the pale, gaunt figure looking back at me. My cheekbones figured prominently, features I haven't seen since before my pregnancy brought a roundness to my face. My shoulders seemed bony and hunched, and my arms were covered in scars and bruises from hits and misses at putting in IV's during my stay at the hospital. I have a six-inch scar from just above my bellybutton down to just above my old C-section scar. It looks much better now that the 20 staples have come out, but still somewhat "Frankenstein-ish" due to the thin line of pulled-together flesh and the matching dots on both sides of the scar. I'm down to 113 pounds. And of course, the wretched stoma and ileostomy bag stares back at me every single day.

In the 3 weeks since surgery, I've learned to become more accustomed to it. But those first days home from the hospital were a shock because I had to adapt to having this thing on my abdomen. I know that having it means that my life had been saved, but nothing prepares you psychologically for such a major body image change. Once the surgery was over, I felt a kind of post-traumatic stress creep into my psyche. I would find myself alone with my battered body and weep bitterly but briefly, and then the episode would pass just as quickly as a rain shower might. I know that one day in the near future I will be well again, and these scars will serve as a reminder of both bad and good things about this journey. But truthfully, if I had known that my body would be so wrecked now just halfway through my 30s, I might have flaunted the slim, strong, and healthy body that I had in my 20s a little more!

I went to see the ostomy nurse, Molly, last Friday for a follow-up. She said that the stoma is healing well and the sutures are looking as they should at this stage. My recovery is coming along nicely, albeit maybe a little too slow for me. We talked again about how the psychological aspect of dealing with the stoma can be just as difficult as the physical. A flash of memory came upon me, and I remembered that in the hospital I had lamented about how this thing was just so gross, and my sister Nina responded that she thought my stoma was amazing, kind of like a "pet". We laughed about it at the time, but I guess medically-speaking it really is amazing that a procedure like this can be performed in order to help a cancer patient recover fully from colorectal surgery. Molly laughed out loud about my sister's pet comment, and I realized how crazy it sounded to a stranger even though it was hilarious between two sisters.

Everyday, I am getting stronger and getting my taste for life back. It's been slow and I've felt a little isolated here at my dad's house. But my little boys are a constant comfort, and we are gearing up for Halloween. I hardly need a costume this year since I look scary enough as it is. The crisp air and the turning of the leaves reawakened a sense in me that this disease has already spanned 3 seasons of my life this year. Once my second surgery is over and done with, I am hoping with all my might that the new year will bring good things and many blessings as a remedy for the hardship and grief that this year has brought to all of us. On a bigger scale-- the economy, the state of the country. And on a more personal level for myself, my family and friends who may be having tough times and sadness too. Life marches on and I intend to join the parade again soon!

Anti-Cancer Tips

Many of you are wondering what I've been doing during the 2 1/2 weeks since my surgery. Not only have I been recovering both physically and emotionally from the scary ordeal that is cancer, I have been doing a lot of reading and research on the underlying causes of cancer and how to combat it. My main concern at this point is making sure that it doesn't come back by learning to develop to habits and lifestyle patterns that will treat the underlying causes of disease, not just the symptoms. There is a lot of source material on anti-cancer diets and even more on the complex reasons one might develop cancer in the first place.

To distill all this information is difficult for the lay person without the medical knowledge to comprehend it all, but the basic underlying principal is that our bodies become overloaded with toxins through the foods we eat, the water we drink, and the air we breathe. From what I've read, the basic Western diet is more chemically-loaded than nutrient-primed, and so our bodies stockpile toxins that our bodies may not be able to get rid of, which could then lead to diseases such as cancer. Most foods are processed or adulterated, loaded with chemical preservatives or pesticides & herbicides, and are made from plant or animal components that have been "dead" for a long time before reaching your table. Unfiltered water may be tainted with additives or we simply don't drink enough clean water everyday in order to assist our bodies in the detoxification process. We breathe air that is polluted or saturated with chemicals that "outgas" during the processing of plastics or we purposely pollute our bodies by smoking cigarettes. All of these toxins bio-accumulate in our bodies and we may not be doing enough to help ourselves detoxify.

The best tool in the fight against cancer is knowledge. We can choose to arm ourselves or let our defenses fall. Doctors and pharmaceutical companies have a vested interest in maintaining the status quo when it comes to conventionally-accepted cancer treatments, but there is so much more you can do to edify yourself and really understand and prevent the underlying causes of disease rather than just waiting to treat the symptoms that develop later.

The following is a list of basic things you can do NOW in order to help boost your defenses:

1. Drink plenty of clean, filtered water everyday- a minimum of 64 oz. Your body needs a way to get rid of toxins that built up in your body and drinking lots of water is the one of the simplest and best ways to achieve this. Try to avoid drinking water out of disposable plastic bottles as the water may be tainted from the plastic and the disposable bottle itself is an landfill nightmare. Another good bet is to drink one cup of Japanese green tea daily. Let it steep for a full 8 - 10 minutes and drink within 2 hours of making it for maximum benefit .

2. Eat a low-fat, high-fiber diet, supplemented with plenty of fruits and vegetables. You've heard this one before, but it is critical because diets rich in fats, red meat, and refined sugars can contribute to many kinds of disease.

3. Cut down on alcohol and smoking or quit altogether. They say youth is wasted on the young, but sometimes health is wasted on the healthy. If you are in good health, don't purposely pollute your body with toxins.

4. Early detection and screening for disease. Know your family history, do the research, "google" the information on disease prevention. You'll be amazed at the amount of information available to you.

Thank You For Saving My Life

Dear Friends and Family,

Nearly a week and a half after surgery, I can say with certainty based on the assurance of my medical team that I am now cancer-free. The pathology test which came back on the section of my colon that was removed during surgery revealed that chemoradiation had shrunk the 4cm cancerous mass and only 1mm of cancer was left in the tissue that had been removed. As I headed into surgery that day, my dad and my sister Nina following behind the gurney on which I lay, I felt a surge of fear after spending all day calming myself for this pinnacle of my treatment. I knew that there were two potential outcomes that would be discovered once I woke up from the anesthesia, and I had resigned myself to the possibility that I might have a permanent colostomy. But when I woke and found the temporary ileostomy instead, and my battered self lying in a pretty recovery room surrounded by friends, family, and flowers, I still could not fathom that it was all over and I had been saved by my medical team: Dr. Oliver Biggers (colorectal surgeon), Dr. Kathryn Crossland (hematologist/oncologist), and Dr. Eric Taylor (radiation oncologist).

I had been heavily sedated to manage the pain and could not really remember a lot of details from that day, and I am appalled and mortified that I had asked for Kentucky Fried Chicken after major abdominal surgery. I guess that was the last food imprint made before I fasted for surgery, so it stuck. My recovery in the hospital was from Monday the 22nd to Saturday the 27th, when I was discharged home to my dad's house in Puyallup to finish my recuperation. I could not absorb the enormity of the good news in so short a time since my battle seems to have been raging for so long. Toni called this my "weird summer of cancer", and I had to be grateful that this struggle did not go on for years, as some have had to endure in their fight against cancer. Even as my oncologist high-fived me in the hospital bed, and I read the words on the pathology report myself, I could only shake my head and cry until the nurse came in and took my hand and soothed me into a calm. Of course I thought of my sons, because this fight has been all about making sure I would be around to raise them.

The first night back home and away from the hospital was a trance of pain medication and despair. Even though I was surrounded by concerned family, the condition of my mind and body made me want to shun all company so that I could let all of this sink in. I snapped at people and then apologized, and then thanked them at the same time I asked not to be fussed over. How could I explain this deplorable behavior? Although I should have been happy and pleasant, the truth was that I was overcome by an extreme sensation of sadness and discomfort. I was acting the opposite of how I should have been feeling because I was influenced by pain and crushing desolation. I had once mentioned the Kubler-Ross Cycle and how I felt that I was going backwards instead. After months of acceptance and calm, I suddenly felt angry and in shock at having this awful bag attached to my abdomen. I had waited all this time to have my "freak out" moment just now.

But as the pain subsides day by day, I can feel gratitude and hope emerging again as the news is repeated to me again by my doctor. As he removed the staples from my surgical incision wound last Wednesday, hearing it repeated when I was in the right state of mind to accept the news made all the difference. I have beat the odds and I will endure yet. I feel a flood of love for all the good people in my life who have helped me to combat this; those who stood by and held my hand, those who nurtured my wounded spirit, those who gave so generously to help me along. I could not have done this alone, battling not only the pain but the range of emotions, and I realized that I had an army behind me the entire time. I reaffirmed many friendships and forged even stronger ones through this experience. The gratitude I feel for my family, too, has encased me in comfort and safety as I run this home stretch toward a full recovery.

I must wear this wretched bag for three more months until I am fully healed. Then I head back in for what I hope to be my last cancer-related surgery to reverse the ileostomy and put me back together again. If it all works, I should hopefully be restored to health, although the physical and emotional scars will serve to remind me that this happened at all. I look back on that hazy week in the hospital and remember a lot of smiling faces and flowers in my room, but not much of what was said. Thank you to all the loved ones who called, e-mailed, visited, and brought flowers to cheer me up. Thank you to my devoted family, who took turns sleeping awkwardly on the small couch next to my bed to ensure that I would feel safe and have company as I recovered. ALL OF YOU, as much as my doctors, deserve unending thanks for keeping me from falling into complete despair and for saving my life in every sense of the word. I am humbled and grateful beyond what words can express. My heartfelt thanks and sincere love to you all.

Post-Surgery Update from Nina

I wanted to update Di's Blog as soon as possible because I know how many of you are anxiously awaiting news of the outcome of surgery. Di's doctor was able to give her the ileostomy instead of the colostomy. This means she will NOT wear the colostomy bag for the rest of her life, but only for a minimum of 3 months while the resectioned portion of her colon is healing. After her agony of being faced with two such extremes for several months, we are relieved to tears and overjoyed that she received the best possible fate today.

While Di was being rolled off to the surgery, our dad walked behind her bed and continued to follow her past the allowed point for family according to the hositpal rules. Having lived through losing his mother, his only sister and the mother of his 5 children to cancer, it didn't seem like much would stop him from walking with her as far as he could or beyond if he wished. As we walked out to the family waiting room for surgical patients, he turned and said to me in half Vietnamese and half English, "Our family, last time, we lose. We don't lose this time."

Though we are still waiting for the pathology in the next couple of days, we are filled with more hope than ever, that he is absolutely right.

Di has woken up and we have just given her the news. We are trying to keep her comfortable and she is groggy, yet her mind is as sharp as a tack. She didn't react to the news, so much as ask twice. Then, in a tired voice, she says "Rowan and Spencer." Regardless of how much pain she is in or how doped up she seems, she still says thank you to the nurses everytime they complete a task for her. They seemed shocked that someone just hours after major surgery remembers her pleases and thank yous, so they give her a little laugh and say " You're welcome." Those who know her are not at all surprised.

Though she is extremely worn out and heavily medicated, and her awareness is fuzzy, she still managed to comment that her hospital room was pretty and not shaped weird like the last room. We wanted to get her a back scratcher for her itchy legs that were driving her absolutely crazy, and coicidentally, however strange, our dad quickly offered the one he already had in his car.(!) (If you have an Asian dad, it's more funny than it is weird.)

When asked if she wanted anything else, she replied, with eyes closed and half asleep, "Kentucky Fried Chicken." Di had to fast the day before her surgery and was starving by end of day. So our dad brought home a bucket of KFC for dinner. In hindsight, they probably should have gone out to eat that night. She continues to tell me, through her sleepiness, that I can share her toiletries and asks if they brought me a cot to sleep on. Even after a life changing surgery, nothing stops her from being a big sister.

I sit here, updating her blog in a chair next to her hospital bed, amazed once again by her bravery, her determination, her love for her boys and her kindness that reminds us all so much of our mom. We are so grateful for this gift, the gift of her future that is unfettered by a daily reminder that cancer took a part of her. She is free to claim that she's beaten it and when that day comes very soon, it'll be a sweet day. You did good today, Sis. We love you.

Hungry for Happy Hour

Tomorrow, I head to Overlake Hospital in Bellevue for my abdominal surgery. Not allowed to eat anything today except water and clear liquids (no solid food, no milk, no soy, no red dyes). At 6pm tonight, I have to start my MoviPrep regimen which involves drinking two canisters of very nasty-tasting powder mixed with lukewarm water. It kind of tastes like liquid lemongrass and is supposed to "clear me out" so that my colon will be prepped for surgery. There's no end to the fun and glamour. I am trying to keep my spirits up, but it's especially hard when you're hungry too. This morning I got some strawberry yogurt on my hand while feeding Rowan and Spencer their breakfast. I had to stop myself before I licked it off! For lunch, the boys shared a Quarter Pounder with Diane, but only after we told them it was a Krabby Patty. The ruse worked beautifully since they love Spongebob Squarepants so much. They ate it all, except for the pickles. I was tempted to even eat those cast-offs from my toddlers' meal- that's the pitiful, hungry state I'm in....

Speaking of food, my friend Jenny and I had a few delicious hours last week to hang out and catch up. We had lunch at a new Vietnamese restaurant in Tukwila called The Lemon Leaf. It's right off the same exit as IKEA, but its interior decor reminded me of The Tamarind Tree in the International District. Very chic and upscale, but the menu was exceptionally affordable like most Vietnamese eateries are. She did find a live bug in her fresh herb/veggie plate (not in her main dish), but the staff was suitably embarrassed and gracious about removing her meal from the tab. We talked so much about our kids, work, life and ideals of happiness. We were so engrossed in our conversation that we pulled our party over to Anthony's Home Port in Des Moines during Happy Hour. I had a fresh, hot espresso shot poured over three scoops of vanilla ice cream, float-style. SO GOOD! My brother Jeff joined us since he lives just down the street, and the three of us contentedly polished off calimari, pan-fried oysters, and shrimp salsa & chips as we watched the sunset over the marina. I realized that I used to do this sort of thing all the time, and now, it seems like these moments of blissful relaxation, good conversation, and excellent appetizers are stolen moments.

It's only been 4 months since my diagnosis, but my world has become more somber. In that moment with Jenny and Jeff, enjoying food that I hadn't been able to eat in a long while, I truly savored and enjoyed it while I could. Today, I am still thinking of that food, but more importantly of the conversation we had. We all get dealt a rotten hand sometimes, but life is what you make of it- even if you have to go to a place that labels it Happy Hour for you. This week, my friend Gina wrote to me of her mom's and her grandmother's struggles with cancer. I know it must have been hard for her to dredge up those memories because she suffered along with them during their illness. I also spoke to my friend Joni, whose mom has been battling metastatic breast cancer (now in her liver) for the past 7 years- when they originally told her she had 6 months to live. I had a good conversation also with my friend Lynnett, who is having a hard time of her own and didn't want to bring it up because she was worried it would add to my burden. In sharing your sad stories, you also shared with me important lessons, and my spirits have been lifted by your gift.

What I realized is that I have a lot of STRONG WOMEN as friends. This includes my 214 friends, my amazing cousins, childhood friends and even many co-workers over the years who have demonstrated their integrity and good character time and again. They face adversity, raise their children, juggle a career, and still find a way to prevail. But we can only do that with a strong support network and friends that we can rely on to vent with, share lessons with, and hope with. We all have sadness and struggles in our lives, but we must also have each other to help us through it. My friends Kimchi and Tina are both pregnant now, and expecting their first child soon. I want to be there to celebrate with them as they join an even greater sisterhood.

As I head into surgery tomorrow, I'll be thinking of my sons and what I want to teach them about my experience long after it's over. They won't remember any of this, but I still want them to know it happened. They need to know that their mother was strong for them long before they could ever see it for themselves, and she could only get through it with the combined strength of so many women who have been, and remain, her friends and allies. I hope to teach them how precarious life can be, and the only defense is strong and resilient friendships. I will also teach them to treat the women in their lives kindly and with respect. As women, we bear our children and we continue to bear so much in life just to ensure that our kids can grow up safe and healthy. We love them, protect them, and teach them- sometimes at great sacrifice to our own health or sense of happiness. But what I wish most for my girlfriends out there is many Happy Hours to come. Please know that you deserve to smile and to be happy, no matter who or what in your life is bringing you down. Know this so that you can raise daughters who become happy, strong women themselves and sons who know how to treat women. To the good men I know, continue to honor the women you love. Take a moment to recognize and appreciate how much they do for you before it's too late. Teach your sons well, for they will look to you as an example of what a man should be.

To ALL of my friends, thank you so much for your support and continued friendship. When I come out on the other side, I will be calling you for coffee or Happy Hour- Count on it!!!

The Bag Lady

Yesterday, I had my third and last appointment prior to day of surgery. I had to meet with the specialist, Molly Price, who will train me on how to use my ileostomy bag and mark the placement location of the stoma. In addition to removing the diseased section of my colon during surgery, Dr. Biggers will also create a "stoma", a surgically-created opening on my abdominal wall through which a section of my small intestine will be drawn out and sewn onto the skin surface in order to allow the body's waste to empty into a man-made bag. This procedure is necessary in order to allow the re-sectioned portion of my colon to heal by allowing waste to instead be eliminated through the stoma temporarily. If I end up getting a colostomy instead, then I will have to wear the bag for the rest of my life, but it will save my life. If I'm lucky, I won't need the permanent colostomy instead, but Molly will show me how to use both since it can go either way as determined during surgery.

Envisioning an older woman with years of experience, I met instead with a young, athletic-looking brunette who seemed like she was already having a long day as evidenced by the frequent exhalation of sighs during our appointment. Molly had so much information to go over, but she was also cognizant of the fact that most patients have much on their minds prior to surgery, so she was careful not to overload or task me with too much. Like a traveling salesman might do, she brought out a range of bags, appliances, brochures of different types of ileostomy and colostomy bags available on the market. It's not a one-size-fits-all world, she said, so she will meet with me in hospital after surgery in order to customize a system that will work best for my body and lifestyle. Chief in my mind is that I have two little sons who will want to be hugged, held, and lifted a lot, so she will find something that works just for me. There were clear bags, opaque bags, different openings, varying sizes, some with built-in charcoal odor filters! Evidently, there were disposable bags, bags with clamps or velcro fasteners, and even bags that were conducive for intimacy. My face must have betrayed some kind of emotion after hearing the enumeration of products that would serve to replace my normal bowel function for the next three months, or possibly the rest of my lifetime, because Molly suddenly changed gears.

Molly couldn't be a day older than me, but she must have felt sympathetic in that moment because she stopped her stream of professional-speak for a moment and instead offered me a moment to take it all in. She said, "I know this is a lot to process right now, but remember to take a moment to grieve. These medical devices work great with few chances of failure, but the biggest thing my patients face is the issue of body image and self-esteem." After hearing those words, I wanted to bite my lip to keep it from trembling and to keep from letting any tears fall, because I hadn't really wanted to think about it at all. Sure, I can regurgitate everything the doctor discussed with me about my diagnosis and treatment regimen, but have I really let any of this sink in? Have I been grieving adequately or have I been hiding behind a false front of bravado and denial? I have to wear a bag to poop! Molly might have read something in my face or sensed some apprehension, and the way she was looking at me made me feel that she could see right through my skin. Maybe she saw the cancer from inside-out or maybe she was staring at the person carrying it, and stopped a moment to empathize.

My friend Phuong is an oncology nurse at the Seattle Cancer Care Alliance and I was wondering at that precise moment if she dealt with this everyday while at work. She once told me it was a "privilege" to be doing the work she does with cancer patients, and I know she is sincere because she is one of my dearest friends and everything about her personality and demeanor speaks to compassion and benevolence toward others. Doctors and nurses are consummate professionals who must deal with the reality of sickness and death in those they treat; but when a patient sees a glimmer of compassion or senses that their health care professional really cares, it makes being treated bearable and humane. Phuong has been my champion and my advocate ever since my diagnosis, and no one needs to remind me how very fortunate I am to have her as a real life guardian angel.

Brought back to the discussion at hand, the tears dissipated before they had a chance to surface, and I regained my composure and took to writing down more notes in the little memo pad I've been carrying around. In order to mark the precise location of the stoma for surgery, Molly had me lie down, sit up in a chair, stand up straight, bend over, and also show her the waistline of my pants in order to determine the flattest and most suitable stoma site. Because of the loose skin on my belly and the distension of my abdomen after having the twins, my case was more challenging to mark. She marked four locations on my belly with her pen before she inked the final site in permanent marker and covered it with clear medical tape so that it won't fade before the day of surgery. Armed with books and brochures, I got up hesitantly to leave and Molly assured me that she will visit me in hospital to get fitted for the right bag post-op. I wanted to believe that she really cared, but she was already on her way to the next appointment. I wonder if she will even pronounce my first name correctly next time she sees me...

Countdown to Surgery

Today I met with Dr. Biggers, my surgeon. He went over the game plan again and clarified other points. After an anuscope, he determined that the tumor had indeed shrunk significantly after chemoradiation. So, all the torture of treatment did result in some measure of success. Instead of the 4cm lump that was there before, he felt "puckered tissue" where the tumor had been. This news is hopeful because that means the surgical procedure will be much more manageable since the tumor has receded, and there's a chance that he can cut out the diseased section of my colon without sacrificing any part of the rectum- which would have necessitated a permanent colostomy. However, only on the day of surgery can he determine with the greatest amount of accuracy whether or not he can adequately remove the tumor site, 2cm on each side, any involved lymph nodes, and the watershed area that feeds it without losing permanent use of my normal bowel functions. If he discovers that there is not enough room, or if the cancer has spread beyond the original site, then he will do whatever is necessary to save my life and ensure that there is no recurrence of the cancer. At that point, he will also be able to "stage" my cancer to determine the extent of the tumor's penetration into the tissue wall. The section to be cut out will be sent for biopsy and testing as well. My white and red blood cell counts are within normal range now, and my CEA level has dropped from 4.3 at the start of treatment to -0.5 as of today, a vast improvement and a hopeful sign. The carcinoembryonic antigen (CEA) test measures the amount of this protein that may appear in the blood. CEA levels may be measured both before and after surgery to evaluate both the success of the treatment and the chances of recovery.

I listened intently, asked all the right questions, took copious notes, but still felt a kind of weary resignation peppered with cautious optimism that I might actually come out of this ok. I thought again of my sons and how I will be around to spend years and years with them to come. A kind of calm and warmth spread through me like an opiate. I saw myself hovering above my own body on the operating table; an observer in a dream. Or it might have been an involuntary flashback to the hazy memory of my C-section when the twins were born. Someone will be digging their hands into my guts again; cutting, removing, rearranging my innards. Of course the thought of major abdominal surgery is creating some measure of calm hysteria, but I must fight the first instinct of fear and accept that serenity and composure will benefit me most as I prepare myself psychologically, rather than physically, for my operation. It could really be possible that I will be cancer-free by year's end. As a mother, and as someone who desperately wants to live for my young sons, I let the idea take root even as I process the fact that any of this is happening at all. When hope is offered, you feel the fight rising in you again, battling the morbid thoughts that run rampant, each taking its turn for possession. I will prevail, I will survive. But if I don't, please make sure my sons know that I fought for the chance to be with them for a lifetime.

Insomnia & Hospital Paperwork

I haven't been very good at updating my blog lately. Not for lack of conscious-stream thought, but because I've had so much weighing on my mind that it falls out of my head at night instead of through the tips of my fingers on the keyboard. Insomnia has had a powerful influence on my frazzled mind and frayed emotions lately. My surgery is less than one week away and there seems to be no end to the details that must be attended to before I go under the knife. Kids, paperwork, finances, house, etc. Tired but sleepless every night; worry consuming my waking hours. Even if I do manage to snooze, I'm frequently awakened by my bladder and remain in a state of feverish thinking long after I've emptied it. By the time sleep claims me, morning has broken and everyone in the house is stirring when I most want to sink under the blankets. They say lack of sleep ages you most next only to sun exposure and smoking cigarettes.

This weekend, longtime friends came to visit me from San Bernardino, California. They've known us since our childhood in Colorado. Now their own kids are in their mid- to late- 20s, all with careers, some with kids of their own. They have been incredibly good to me. I think back on many friendships nearing the three decade mark, and many others of comparable quality that have been nourished in shorter spans. I think also of many friends who have been lost over the years; some who have died and others who are ghosts all the same. So many have come through for me, even some from unexpected corners. Still others I thought I could count on are not heard from and nowhere to be found. But I have no grievance because each person and each family has its own measure of trouble and grief, none of which is truly relative because it strikes us all differently and hurts us in ways only we can feel. Friends can help to mitigate our pain, but we must carry the load ourselves.

I went to my first pre-op appointment today to fill out paperwork and get blood work done prior to surgery- it helps to cut down on the number of tasks that make the day of the operation hectic. They took three vials of blood to test my counts- white and red blood cells, and verify blood type in case of transfusion during surgery. Although both nurses were very nice, I sense that they see many, many patients and I'm just another person with cancer and this is where they show up to work everyday. I've spent so much time in hospitals with my mom, when I had the babies, since my diagnosis and treatment, even to visit friends when they were in need. It is both a scary and comforting place to me, and I will be spending 5 to 10 days here after abdominal re-section. I am meeting with my surgeon tomorrow to go over the test results and discuss the plan of action for surgery. This week will go by fast and I am trying to keep my fears at bay as the date approaches. If only I could sleep........

Stand Up To Cancer!

Friends,

If you read this in time, please watch the televised cancer awareness telethon on all three major networks this Friday night at 8pm. Stand Up To Cancer is a fund- and awareness-raising organization that is putting on a major TV special for cancer research. Hollywood Producer Laura Ziskin (who has been battling cancer herself since 2004), former Paramount Pictures chief Sherry Lansing (who established a namesake foundation for cancer research and awareness), and Katie Couric (who lost both a husband and sister to cancer) organized this star-studded event. It will feature many celebrities who hope to raise awareness and money for "translational research," as described by Laura Ziskin, "which encourages scientists to collaborate rather than compete, translating basic science into applicable therapies for patients." They hope this project will bring greater awareness to cancer research in much the same way Al Gore's "An Inconvenient Truth" raised awareness of global warming. Their aim is to find faster, better, less toxic treatments for cancer patients. Over half a million Americans die from cancer every year.

Celebrities such as Christina Applegate will share their personal experiences with the disease and will help answer phone calls from donors during the telethon. Other stars set to appear include Halle Berry, Forest Whitaker, America Ferrera, Jack Black, Salma Hayek, James Taylor, Carrie Underwood and Rob Lowe among many others. The hourlong show also will include a performance of "Just Stand Up," a charity song featuring Mariah Carey, Mary J. Blige, Beyonce, Rihanna, Fergie, Miley Cyrus, Leona Lewis, Carrie Underwood and many other musicians. Couric and her fellow network news anchors, Charles Gibson and Brian Williams, are set to host the show.

For more information on the televised event or the organization, please go online:
http://standup2cancer.org

The Painted Veil

Only 3 weeks left until surgery and my head is hurting more than my guts at the moment. The past few weeks have been about recovery, healing and preparation for the operation to remove a section of my diseased colon. I desperately needed to salvage my summer, most of which has been spent in treatment or convalescence. The twins and I stayed at my brother Zhivago and Toni's house for a few weeks and there was no end to the comedy! We had a townhouse stuffed with 3 adults, 3 kids, 2 cats, and a toy rat terrier to make things merry. I came out of the bathroom early one morning and Toni asked me, "Did you go poo?" A split second later, I arrived at the realization that she was talking to one of the babies, and not me- even though she was inadvertently looking directly at me when she said it. Considering all the problems I've been having lately, it really was a valid question so I didn't fault her for the startling inquiry into the success of my bowel movement. The very next day, Toni told me authoritatively to, "Go outside and go potty!" Again, she was looking at me, but talking to Doe, their little dog. But Toni does not have a monopoly on ill-timed, yet hilarious one-liners. Feeling obligated to eat a Gardenburger the other day, I tried desperately to swallow the first bite. My carnivorous brother quipped, "That's your first mistake- your lunch does not have a soul." These hapless moments keep things jovial in a house packed full of people and pets.

But trying to stay positive and actually feeling good about things are sometimes mutually exclusive. The very phrase "staying positive" denotes an effort to find comfort in an uncomfortable situation. This is what I call The Painted Veil. The picture of happiness you present in order to put everyone (including yourself) at ease, and the truth behind the curtain when you stand alone with your thoughts. There are times when I can truly savor things like a great moment spent with family or a brief surge in my energy level. But it's not the same as being able to enjoy it as I once did when I was fully possessed of my good health. And when you are already slowed by illness, there is no worse nag than worry. Sometimes, trouble comes upon us so thickly that unbidden tears slip and burn before we can stop ourselves; extinguishing joy, snuffing it out like a light. The world is full of friends, but we all feel at times that crushing loneliness that blights the happiness that we might otherwise feel. We are sometimes solitary in our sorrow because sympathy carries you only as far the painted veil you put up for others. The company of friends and family can be a salve to our wounds, but we can still bleed under the bandages.

When I can't sleep at night, I roam the halls like a ghost or lie in bed staring at the walls hoping that deep slumber can make me forget everything that is troubling my waking hours. After my mom passed 12 years ago, my dreams consistently revealed dark, quiet rooms where she would lay in her sick bed. I could never talk with her- or at least she would never answer me, and she always looked pale and gaunt as she did in those final days of her struggle with cancer. These dreams usurped my nocturnal sojourns for years, until one night I had a visitation dream that finally assuaged my abiding grief. I looked across the length of a moonlit pool of clear water. On the other side, my mom and my long-deceased grandfather sat at a table playing cards together! My mom actually smiled and waved back at me. I woke up choking with tears, truly knowing that she had finally crossed over and was no longer sick, in a better place, reunited with her own father. She looked radiant, healthy, no longer emaciated and tired-looking, her hair was full again. And best of all, she had acknowledged my presence in this dream so I knew that she was telling me that she was ready to let us go and she was finally happy now. The remembrance of this dream still reduces me to racking sobs, even as it lifts me up and frees me from the grief I held inside for so long after losing her.

So when I am feeling down or troubled, I remember that dream because nothing can ever make me feel as aggrieved and elated at the same time. It would be unrealistic to think that we can be happy all the time, even if that's how we front to the world. And even though our life may be filled with good things and loved ones, there is a lonely corner that sorrow reserves for you behind the painted veil. Be kind to everyone you meet, because they may be facing a harder battle. -Plato

Great Wolf Lodge

Yesterday we came back from a quickie vacation at Great Wolf Lodge in Grand Mound, WA. It is a hotel/resort with an indoor water park complete with several activity pools and slides. My brother Zhivago, his wife Toni, their son Connor invited me and the boys to come with them as a last hurrah before school starts for the kids. On the way there, we picked up my little sister Diane to come along with us. I had some anxiety about taking the twins on such a large group vacation, mostly because I know they are high maintenance at 2 1/2 years old, so I didn't want to spoil everyone's time going on the rides if we had to constantly chase the twins down in a big crowd. But you know what? We had a great time despite all the difficulties and logistics of getting there!

The seven of us and our stuff crammed into my mini-van (I knew my un-sexy ride would come in handy for situations just like this). During the 2+ hour drive there, the kids watched a DVD in the van and generally touched, tickled, and kicked the back of everyone's seats. Toni and I had packed enough snacks to feed a small third world country we when found out there would be a fridge and microwave in our hotel room. This resort completely caters to children and a family vacation environment. We checked into a huge family suite complete with a separate king bed suite with its own bathroom, two queen beds, a full-sized pull-out bed, fireplace and 20 ft. ceilings! We had so much room to relax and play, and the kids had a devastatingly fun pillow fight jumping back and forth between the two beds. There was an arcade, a "tween" dance club, story time with animated forest creatures in the grand lobby, six restaurants, and a Cub Club activity center.

For most of the day, we played in the huge indoor water park. It had a wave pool, a water "fort" that dumped a giant bucket of water on revelers every 20 minutes, two medium-sized water slides and two even larger, monster water slides that twisted out-of-doors and back inside again. It also had a very large kiddie pool that went from 0' to 1' deep for the little ones, complete with their own water cabin, fake jet skis for them to sit on and squirt each other with water guns, a mini water slide, a banana boat, and all manner of fountains, spouts, buckets, water jets, everything you can imagine for kids to work themselves up into an ecstatic frenzy of pure water enjoyment. There were lots of lifeguards and flotation vests to keep the little ones safe and secure.

Rowan and Spencer played and frolicked in the water until their fingertips turned pruny and their little lips went purple. Connor and Diane rode the floats in the giant wave pool, and somehow Diane (who is 7 years old) was convinced to ride the biggest water slide of them all. Zhivago said she had a look of sheer terror on her face as they slid really fast around in the slide and then dropped precipitously into a large bowl and jetted out the end of the slide. She kept wanting to wipe the water out of her eyes as they zipped down on their inflatable, but he yelled at her to HOLD ON at all costs! Connor braved all the big water slides again and again- not bad for an 11 year old.

I had fun watching the kids have fun. Not feeling as well as I could to fully enjoy all the rides, I was content to just make sure they were having a good time. So I put on my appropriately matronly swimsuit that hid most of my stretch marks and surgery scars, and just waded after them and kept them out of trouble. We had such a good time, and I know I could hardly imagine trying to take Rowan and Spencer to places like that by myself. I want my boys to experience a lot of good things in life and not be hindered by logistics or cost just because they are twins. Zhivago and Toni are amazing with them, and so are Connor and Diane, I couldn't ask for better company on a vacation. As August comes to a close, we can already feel the slow creep of autumn upon us as kids head back to school. Which also means my surgery date is looming. I want to enjoy every last minute of what's left of summer while I can.

Momentous Vomit Episode

I was just thinking about my friend LouAnn and how she has made me laugh in spite of everything going on. Back in June, she met me at Evergreen Hospital for my daily radiation treatment. We caught up over lunch afterward since I hadn't seen her for almost a year. After a describing the side-effects of treatment to her, she responded in her typically irreverent, but lovable sense of humor, "Oh, you mean you have torch-butt." Yeah, something like that, and we laughed and laughed over it even as my insides ached.

Last Monday night, I had dinner with LouAnn and my friend David at Divine on Roosevelt. We had planned this dinner for some time, but on the appointed day I suddenly felt nauseated and extremely tired, and didn't know whether I should cancel on them. Not wanting to disappoint them or myself, I drove to Seattle anyway and made my apologies for not feeling well. After feeble efforts to be lively and stay in the conversation, I got up abruptly from the table and excused myself to go to the bathroom. Once there, I promptly threw up. Evidently, it was something bad I ate earlier in the day but I hadn't made the connection until that moment. Once it was all over, I really did feel so much better and was able to re-join my friends at the dinner table. David and LouAnn were a little distressed on my account, but I was determined to salvage our dinner date. I didn't eat much after that, but at least I felt well enough at that point to enjoy their company and not make waste of such a fine evening.

When I called LouAnn later in the week to thank her for dinner and to apologize again for my momentous vomit episode, she again irreverently replied, "We'll have to get you a T-shirt that says, 'Throw up before you show up!'" More uncontrollable laughter at her craziness. That's classic LouAnn, and I wouldn't change her for the world. She reminds me that we have to find laughter even in the darkest and most dreadful aspects of life so that we can illuminate the moments that are good instead.

Healthy On The Outside

I guess I'm relatively fortunate to not have deteriorated to the point where it's readily apparent that I'm fighting cancer. Friends who've seen me recently tell me that I look and sound well, not sick at all. To me, that's the best kind of feedback because no one wants to look as ill as they feel at times. Some express surprise that I haven't lost any hair. Because radiation treatment was focused on my lower body, there was never any real danger of me losing any of my hair, and the chemo wasn't enough to really make it all fall out. I actually lost more hair after my pregnancy when my hormones were all out of whack.

I only lost a total of 8 lbs at the conclusion of treatment, when most patients tend to lose about 20 lbs. I'm at about 120 lbs now. So far, I've kept the weight off even as my appetite has returned with a vengeance- in fact, I'm thinking about a ham sandwich even as I type this- but I am eating much healthier now. I've cut out red meat almost entirely, and eat mostly chicken and fish, brown rice, eight-grain bread, and lots of greens and fruit, some of it organic. My stepmom cooks a lot of simple, healthy and tasty Vietnamese dishes for me and I'm on my way to building up my strength again before surgery in a month. With any luck, the cancer cells have all been obliterated, so I have to pack in the protein since my healthy tissues need a chance to regenerate after the onslaught of chemoradiation. But I do sneak in a lot of chocolate, which is strange because I crave it more now than I used to. Dark chocolate does happen to have antioxidant qualities. My family tells me my face looks slightly slimmer than before, but my baby belly is still hanging out there as a badge of maternal honor. I got back my pre-pregnancy weight, but I will never again regain my pre-pregnancy shape, sigh. That belly bulge will never go away unless I give in and go for a tummy tuck; but I hardly need another surgery since I will have had a total of three by year's end.

Some of the photos I've posted on this blog page were actually taken in the past month. My friend Toshi and his wife Cherry Mae said they're surprised and pleased that I look more well than they thought I would considering everything I've gone through. Other than moving more slowly, being more fatigued, and experiencing those annoying hot flashes, most of my cancer routine is privately fought. I take my pills several times daily as I have for the past few months, and it's getting to the point where I really detest swallowing pills. But I can feel the residual pain and inflammation inside when I don't take them on time. I can't wait until I'll be done with them for good, but surgery is coming up soon so I think I may be carrying those little plastic bottles with the white caps for some time yet.

When I feel good and have some energy, I save it to play with Rowan and Spencer or I take short, easy walks just to breathe in some fresh air and get some vitamin sunshine. When I do go out, I put on some foundation and plenty of blush so that I can glow a little and hide any pallor or the dark circles under my eyes. For now, I will happily masquerade around as a healthy person on the outside. That way, I am not scaring anyone with what could otherwise be an outward reflection of my inward battle.

Sleeping Babies, Sleepless Mommy

It's 4am and I can't seem to get back to sleep. The onslaught of heat saps what little energy I can muster everyday. Although, I'm not exactly complaining after the horrid winter we had. It's just that the super-heated days combined with my frequent menopausal hot flashes compound my fatigue. I can't seem to get enough sleep or water to counter the effects. Being awake at this quiet hour, I did check on my babies to make sure that they are sleeping comfortably in this heat. They look beyond cute in nothing but their overnight Pull-Ups. Spencer woke up with a messy nose-bleed earlier but I cleaned him up, gave him a cool cloth wipe-down and he drifted right back to sleep with minimal whimpering. Rowan had his hand tucked under his cheek like a sweet little baby, but just shifted so that he is sleeping butt up in the air and limbs curled under like a diapered turtle.

They are growing so fast and losing their baby fat that I love so much, so I pinch their little butt cheeks while I still can. Looking at their elongated baby bodies, I'm still astounded at how I managed to brew up such big, beautiful babies in my belly. They used to fit in there together! Now they are their own little people, with completely opposite but big personalities, capable of so much love and mischief. My sons don't know or understand how sick I am, but they hug me so tightly, and laugh and play so innocently, that no medicine could possibly make me feel as good. I can't begin to imagine how much worse this illness would be if I had never had my children as a daily source of joy and comfort to me. It's a bittersweet realization to know that I have them in my life, yet I might not a life with them if I don't beat this thing. I HAVE to be around to help them grow up-- this thought consumes many of my waking hours. I want to teach them about the absolute value of family and friendships, having compassion and empathy for others, the importance of education, and living life with purpose and merit. I want them to always know how special they are, even when they are just sleeping.

The Least Discussed Cancer

Nothing about colon cancer is remotely appealing, and it seems to be the least discussed type of cancer simply because it involves the organs of waste elimination- and nobody wants to talk about that! However, in an effort to edify and raise awareness of this disease, I feel it's best to just tell it like it is. The truth is I'm sick right now and so I'm beyond feeling "embarrassed" about any of this, because this is my life we're talking about. I've said that I've lost some sense of modesty in medical situations after having two kids, so I've just about abandoned any qualms about discussing my body and my bowel movements at this point, although I try not to force the information on anyone. But when anyone expresses curiosity or concern, I welcome and even encourage questions because it gives me an outlet as well. I can be quite candid and frank in my discussions about it because there's no way around it anyway. A friend once told me that once you have kids, 90% of your conversations are going to be about poop. Well, that seems to be the case with colon cancer as well, go figure. The following post may be a bit grisly at times but it is what it is, so continue reading at your own risk.

Everyone wants to know what happens now that my chemoradiation treatment has concluded. At the time of diagnosis back in May, the colorectal surgeon discovered a 4cm tumor in my lower colon, which was confirmed by the subsequent CAT scan. The scan also revealed that there did not appear to be any visible metastasis to my other organs at this time, so that was a bit of good news. It made radiation treatment much easier to devise since most of the radiation beams would be extremely localized and focused on the single tumor. However, the location of the tumor is a bit problematic since surgical removal of it and the surrounding tissue could result in having to remove part of the rectum as well. That would necessitate my having to wear a colostomy bag for the rest of my life. For those of you who don't know, a colostomy is a surgical procedure that involves connecting a part of the large intestine onto the anterior abdominal wall, resulting in a stoma or opening on the abdomen to which a bag would be attached to collect any waste. Due to my relatively young age, the medical team wanted to try a treatment regimen that would increase my chances at a better quality of life by first attempting to shrink the tumor via chemoradiation before surgically removing what's left of it.

After 6 full weeks of radiation treatment and daily 5FU chemotherapy, we can only hope that the tumor has shrunk to a point where it would allow the surgeon to remove the tumor growth area without sacrificing any part of the rectum. At the time of the surgery, the doctor will be able to see if, and by how much, the tumor has shrunk after chemoradiation. He intends to cut out the cancerous section of my colon and about 2cm on each side of the tumor location, as well as taking out any proximate lymph nodes and the watershed area that feeds it. If successful, the surgery will prevent the cancer from spreading to other organs and save the rectum, therefore evading a permanent colostomy. The doctor will also be able to more accurately "stage" my cancer, which means that a descriptor (usually a number between 1 and 4) is assigned to indicate how much the cancer has spread. It takes into account the size of the tumor, the depth of penetration into the tissue, the involvement of lymph nodes, the spread to adjacent or distant organs (called metastasis). Accurate staging is the best predictor of survival after treatment, or it may even determine the plan for further treatment. If there is any chance of recurrence or if it is evident that the cancer has spread, then an executive decision will be made to remove the rectum as well and I will have to live with a colostomy for the rest of my life. But it will be a small price to pay in exchange for years of life with my children.

I am not going to lie, I really suffered through chemoradiation and I would never wish such an affliction on my worst enemy. The pain and discomfort were excruciating at times. I was literally burned inside out, and the pain of making a bowel movement through raw, burned and damaged tissue was enough to leave me breathless, shaking and bleeding each time. I was psychologically afraid to eat because I feared the inevitable bowel movement that would follow, so I went hungry for days and it made me even weaker. That is why I had to be admitted to the hospital after 6 full weeks of getting burned by powerful rays that are meant to kill the cancer cells and enduring the 5FU chemo that coursed through my veins daily like a poison. Both of these treatments caused collateral damage to healthy cells and tissue as well, which means that my ovaries and my uterus were fried in the process. The doctor told me that such damage could not be avoided, and the result is that I will never again be able to have children and that I will subsequently experience all the symptoms typical of menopause at age 35. The news was not particularly devastating to me because I already have my twins. The fact that I had children very recently, and that I was lucky enough to have had two at once, was a blessing and comfort to me in the face of such terrible news.

But now that the treatment is done, my body needs the time to rest and rejuvenate before surgery. The doctor explained that he usually requires 8 weeks of recovery from chemoradiation before surgery since operating before the body has had a chance to heal tends to result in extra bleeding and leakage at the surgical site. So my surgery is scheduled for September 22nd. Post-surgery, I can expect about 5 - 10 days in the hospital to heal and wait for my colon to "wake up" again. Not only is he cutting out the cancer, he is simultaneously installing an ileostomy, which is a stoma for the small intestine instead. Having the ileostomy for 3 months will allow the surgical site to heal by bypassing the colon altogether. Although I am a little bit frightened by the prospect of major abdominal surgery, I remind myself that I made it through an emergency C-section for my twins, and I should be able to weather this as well. The incision will be perpendicular to my C-section scar and will run from my bellybutton up toward my chest. After 3 months of healing, the doctor will reverse the ileostomy and try to put me back together again. If everything goes well, I will not have to live with a permanent colostomy or get adjuvant chemotherapy and my body can hopefully work the way it used to. With any luck, the cancer will either be eliminated or go into remission.

This is my life right now, and I am just trying to buy some more time so that I can have years ahead with my kids. We are all living on borrowed time anyway, but I'd like to take an advance, and we know the kind of fees that are charged for that. Live well, my friends, and take good care of your health. You will not even begin to know how much you will miss it when it's taken from you.