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.