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.
Saturday, November 29, 2008
Saturday, November 22, 2008
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.
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.
Saturday, November 15, 2008
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.
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.
Sunday, November 9, 2008
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.
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.
Tuesday, November 4, 2008
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.
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.
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