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.