Today, I turned 35 years old and learned to appreciate what a birthday truly means. My friend Steve B. and I have a running joke about birthdays being "contrived human milestones"- the cake, the presents, all the hoopla. We get older, we fuss over our looks, we wax philosophical about how quickly the years go by, and perhaps, we even start to get a bit more crotchety. But the nurse who attended my port surgery, June, put it all into perspective for me. She said there was a point in her life where she felt much the same way- it's another birthday, big deal, so what? But then she had an epiphany and realized that the birthday IS the gift. You made it another year in life and lived to tell about it. Who better to comment on the magnificence of this statement than a nurse whose very job it is to attend to countless births and deaths on a daily basis? If we change our mindset, birthdays shouldn't be viewed as the inevitable countdown from the cradle to the grave, but rather they should be embraced as the finest of sentiments and celebrations because we happened to survive another year. My sister-in-law Toni celebrates her birthdays the whole week long, and I'm beginning to think she's on to something....
Today, my father-in-law Phil took me to treatment. He recently underwent a colonoscopy himself, and they were able to immediately take care of a potential problem due to early detection. He used to be the head surgeon at Virginia Mason and has been in retirement for about 7 years. He's in his 70s, stays active, plays bridge and tennis regularly, crafts beautiful bonsai as a hobby, manages an orchard and vineyard in Okanogan, and was recently re-married. He and his wife Pedie travel and do all kinds of fun things together, and they even celebrated their two week wedding anniversary together just because they could. Their story makes a good case for longevity, doesn't it?
Even in my worst throes of pain and discomfort today, I felt an elevated sense that this birthday would hold a lot of meaning for me, and that I must be thankful above all else and still find reason to celebrate. I'm still here after all, and I'm fighting the good fight. I'm bearing up and realizing that this, too, will pass and that I'll endure for my sons, myself and all those whom I love. So, it's not about celebrating me, but about me celebrating all that is good in my life. Today, I became fully cognizant that the best kind of birthday gift is the profound sense that I am loved and that I have so many to love in return. Life is an infinite exchange of love and good energy if that's how we choose to expend our efforts in the time given to us.
So today, Nina, Jennifer, Zhivago, Toni, Mike, Janelle, Connor and Winston were there to ring in my 35th year over decadent cupcakes and sparkler candles. I received flowers, gifts, serenades, e-cards, calls, voicemails, and felt overcome by a sense of love which invigorated me with the will to fight this and survive to my 36th birthday and beyond. So today, I celebrate 35 years of good fortune in a loving family and countless friends who should all know how much love I have for each and every one of you. Thank you for reminding me what birthdays are really about.
Monday, June 30, 2008
Saturday, June 28, 2008
The Kübler-Ross Grief Cycle
During this brief respite where I've managed to summon just enough energy, I wanted to try to sneak in another post while I can still manage it. The past week has been particularly hellish. The buoyancy of spirit I felt in the first two weeks has been replaced by a smothering fatigue, sometimes excruciating pain, and a feeling of despondency over the reality of all this. I've been laid so low. I had to ship the twins off to Zhivago and Toni, my brother and his wife, in order to ensure that they get the love and attention they need during this time. The twins are oblivious to all this, and that's exactly how I want it to be because I cannot imagine trying to explain why this is happening or how I could possibly shield them from my episodes of pain and exhaustion. We had to wait until the first day of summer for the winter to finally be over, and the kids deserve to be outside playing in the sun instead of cooped up in the house with their seriously-ill mother. Winston has been contributing as much he can, but he is working full-time and has some of his own serious issues to deal with.
We have this ongoing joke about BC (Before Children) and AD (After Diapers). For instance, we are nostalgic about all the free time we had BC or where all of our money goes AD. Now, BC is Before Cancer and AD is After Diagnosis. It makes all our previous complaints trivial and petty, doesn't it? In context, the things you find to complain about can be magnified exponentially under a more powerful microscope. Once you see how ugly things can look under a microscope, it makes you want to be blissfully ignorant again in the big picture of things.
If I could just get well again, I could put my entire existence into context and separate the petty from the precious. In the Kübler-Ross Grief Cycle, the fourth stage is one of desperate bargaining. In order, the stages are: Shock, Denial, Anger, Bargaining, Depression, Testing, Acceptance. Is that where I am? It seems to me that I've been doing it backwards, actually.....I'm in the middle either way.
People don't joke around when they say that their life priorities get re-ordered after facing down their mortality. Should we wait for the trigger to be pulled before we do that? Or should we jump the gun and make things right in our life before the opportunity is taken away?
Side-effects after the fourth full week of treatment:
-fatigue
-bleeding
-raw, sunburned internal tissue from the radiation beams
-brown spots on my fingers and tongue from accumulation of chemo
-gastrointestinal discomfort
-loss of appetite
-dry mouth and sores
-constant feeling of urgency that mimics urinary tract infection
We have this ongoing joke about BC (Before Children) and AD (After Diapers). For instance, we are nostalgic about all the free time we had BC or where all of our money goes AD. Now, BC is Before Cancer and AD is After Diagnosis. It makes all our previous complaints trivial and petty, doesn't it? In context, the things you find to complain about can be magnified exponentially under a more powerful microscope. Once you see how ugly things can look under a microscope, it makes you want to be blissfully ignorant again in the big picture of things.
If I could just get well again, I could put my entire existence into context and separate the petty from the precious. In the Kübler-Ross Grief Cycle, the fourth stage is one of desperate bargaining. In order, the stages are: Shock, Denial, Anger, Bargaining, Depression, Testing, Acceptance. Is that where I am? It seems to me that I've been doing it backwards, actually.....I'm in the middle either way.
People don't joke around when they say that their life priorities get re-ordered after facing down their mortality. Should we wait for the trigger to be pulled before we do that? Or should we jump the gun and make things right in our life before the opportunity is taken away?
Side-effects after the fourth full week of treatment:
-fatigue
-bleeding
-raw, sunburned internal tissue from the radiation beams
-brown spots on my fingers and tongue from accumulation of chemo
-gastrointestinal discomfort
-loss of appetite
-dry mouth and sores
-constant feeling of urgency that mimics urinary tract infection
Thursday, June 26, 2008
Not a Katie Couric Wannabe
I've said before that I'm all for cancer awareness, but I could never go so far as to have my colonoscopy broadcast on national TV like Katie Couric did a few years ago. Her husband died of colon cancer in his mid-40s and she wanted to heighten awareness of the disease. Part of my mission is to make sure my family, friends and loved ones stay healthy by edifying them about cancer through my own experience or by empathizing with them if they are survivors themselves or caring for family members with cancer. This week, all three of my brothers and my sister will have their first consultation before scheduling their own colonoscopies. After my diagnosis, I insisted that they all get screened too. Two other people told me that they recently experienced similar symptoms and are now seeking medical advice immediately instead of ignoring, underestimating, procrastinating; and they said that they responded with urgency in part because they were aware of my diagnosis.
Cancer awareness is now my cause and that is partly why I agreed to maintain this blog that my sister Nina and her boyfriend Mike created for me. I'm putting my cancer experience out there so that family and close friends can stay updated on my treatment and I can keep a journal of all the events, names, recollections, and my state of mind as I undergo this- for my sons, if necessary. But, I'm not trying to be a celebrity here- never in a million years for this reason. Cancer is deeply personal and I don't want to be judged for "posting" the highs and lows during my illness nor would I want to be the subject of idle gossip. I should not have to consider that a peripheral audience stumbled onto this blog and now I have to censor myself in order to make sure that my sometimes discomforting, painful or just plain ugly incidences are not subject to water cooler talk. My family is re-living the nightmare of my mom's illness because of my diagnosis, some of my old friends knew me years ago at the time she died, and my new friends love and understand me enough to know why I am keeping this blog. My friends know who they are. They share my history, my sense of humor, and understand my need to communicate openly with them out of love and gratitude. This blog is for them, for me, and for my sons. If you are getting something positive out of this, then please read on! If you don't get it, then you don't get me and who I am. Please read this blog with care.
Cancer awareness is now my cause and that is partly why I agreed to maintain this blog that my sister Nina and her boyfriend Mike created for me. I'm putting my cancer experience out there so that family and close friends can stay updated on my treatment and I can keep a journal of all the events, names, recollections, and my state of mind as I undergo this- for my sons, if necessary. But, I'm not trying to be a celebrity here- never in a million years for this reason. Cancer is deeply personal and I don't want to be judged for "posting" the highs and lows during my illness nor would I want to be the subject of idle gossip. I should not have to consider that a peripheral audience stumbled onto this blog and now I have to censor myself in order to make sure that my sometimes discomforting, painful or just plain ugly incidences are not subject to water cooler talk. My family is re-living the nightmare of my mom's illness because of my diagnosis, some of my old friends knew me years ago at the time she died, and my new friends love and understand me enough to know why I am keeping this blog. My friends know who they are. They share my history, my sense of humor, and understand my need to communicate openly with them out of love and gratitude. This blog is for them, for me, and for my sons. If you are getting something positive out of this, then please read on! If you don't get it, then you don't get me and who I am. Please read this blog with care.
Tuesday, June 24, 2008
Re-mission
Excruciatingly painful side effects these past few days. Good cheer has been dampened somewhat because this is the real thing now. In these moments, it's terrifying to be alone, but it's not the kind of thing you want anyone to see either. Three full weeks down and two and a half weeks to go before the chemoradiation portion of treatment is over. There will be a 6 to 8 week recovery period before my surgery in September. Long, obliterating naps have been the remedy of choice lately but the reality is there when I wake up. Remission is a word I've been saying over and over in my head because it starts to sound like re-mission instead....which is exactly what I intend to do with my life once I get it back.
Saturday, June 21, 2008
The Good, The Bad, The Ugly Truth & A Mother's Love
Those who have seen me and spoken with me recently tell me that I look and sound surprisingly well. The good news is that I am as cheerful as I sound most of the time, all things considered. I am gratefully ensconced in the care of my family and friends, so how could I be otherwise? As for my looks, I am taking everyone's word for it since I have not yet lost much weight and I don't expect to lose any hair during treatment.
The bad news is, the side effects are manifesting like a furtive assassin after three full weeks of daily radiation and chemotherapy. General Fatigue has always been there, the foe of many mothers who have young children. Compound that with Major intravenous poison of chemo and the Private discomfort of radiation effects and the result is a bone-crushing exhaustion that no amount of sleep seems able to fix. There are days where the battle creeps up on me like waves dragging me slowly under, demanding that I rest. Other days, it hits me hard and fast and I fade out like a machine that has been powered down, lights going dark, the barely audible sigh of energy being sucked out. The daily radiation beams literally sunburn me from within, an attempt at shrinking the 4cm tumor and controlling any microscopic metastases before surgery later this year. The treatment itself does not cause pain, but the side effects certainly do. Truth be told, the pain is terrible at times, but not totally unmanageable. No part of cancer is fun, despite any cheerful and humorous attempts to mitigate the ugliness of this disease.
The physical battle can be fought with good strategy, the right equipment, and a competent team behind you. The emotional battle, however, can be the more difficult campaign. I've always told myself, and I really believe, that the power of positive thinking will get me through this. That the good energy of family and friends will lend itself to a sound mind and a hale body. But I would be lying if I told you that in the midst of my blithe and cheerful outlook, there weren't moments of slight, stricken panic, of compulsory depression, and of requisite grief. I am not in denial of my disease-- I am just choosing to count my blessings above all else and trying to stay cheerful so that I don't scare my children, my family and myself. But that doesn't mean that I haven't given in to weeping privately. I am not sad for myself, because in some ways, I've always known that cancer would be in the cards for me.
Rather, I'm thinking always of my sons, Rowan and Spencer. They are 28 months old and too young to grasp any of this. Hopefully they won't remember any of this at all, so that if I go into remission they can grow up without this dark cloud over their bright childhood. But when the depression takes hold, I succumb to morbid thoughts like whether they will remember their mother at all if I won't be around to help them grow up. I was 23 years old when my own mother died, and nothing in the world could ever hurt that much again other than the thought that I might lose my sons. I am fighting this battle for them because I am selfish enough to want them for the remainder of my lifetime, however long Providence deems that to be. I want to know that the sum and success of my entire life will be in seeing my two boys grow up to be good people who are content in life. To know that I raised them right and left a respectable legacy; that they will be a credit to all my efforts. That they know a mother's consummate love can transcend even the expiration of her life, just as I know my mom's love endures for me.
The bad news is, the side effects are manifesting like a furtive assassin after three full weeks of daily radiation and chemotherapy. General Fatigue has always been there, the foe of many mothers who have young children. Compound that with Major intravenous poison of chemo and the Private discomfort of radiation effects and the result is a bone-crushing exhaustion that no amount of sleep seems able to fix. There are days where the battle creeps up on me like waves dragging me slowly under, demanding that I rest. Other days, it hits me hard and fast and I fade out like a machine that has been powered down, lights going dark, the barely audible sigh of energy being sucked out. The daily radiation beams literally sunburn me from within, an attempt at shrinking the 4cm tumor and controlling any microscopic metastases before surgery later this year. The treatment itself does not cause pain, but the side effects certainly do. Truth be told, the pain is terrible at times, but not totally unmanageable. No part of cancer is fun, despite any cheerful and humorous attempts to mitigate the ugliness of this disease.
The physical battle can be fought with good strategy, the right equipment, and a competent team behind you. The emotional battle, however, can be the more difficult campaign. I've always told myself, and I really believe, that the power of positive thinking will get me through this. That the good energy of family and friends will lend itself to a sound mind and a hale body. But I would be lying if I told you that in the midst of my blithe and cheerful outlook, there weren't moments of slight, stricken panic, of compulsory depression, and of requisite grief. I am not in denial of my disease-- I am just choosing to count my blessings above all else and trying to stay cheerful so that I don't scare my children, my family and myself. But that doesn't mean that I haven't given in to weeping privately. I am not sad for myself, because in some ways, I've always known that cancer would be in the cards for me.
Rather, I'm thinking always of my sons, Rowan and Spencer. They are 28 months old and too young to grasp any of this. Hopefully they won't remember any of this at all, so that if I go into remission they can grow up without this dark cloud over their bright childhood. But when the depression takes hold, I succumb to morbid thoughts like whether they will remember their mother at all if I won't be around to help them grow up. I was 23 years old when my own mother died, and nothing in the world could ever hurt that much again other than the thought that I might lose my sons. I am fighting this battle for them because I am selfish enough to want them for the remainder of my lifetime, however long Providence deems that to be. I want to know that the sum and success of my entire life will be in seeing my two boys grow up to be good people who are content in life. To know that I raised them right and left a respectable legacy; that they will be a credit to all my efforts. That they know a mother's consummate love can transcend even the expiration of her life, just as I know my mom's love endures for me.
Friday, June 20, 2008
Thanksgiving in June
Jennifer Peterson is lovingly known as my Albino Asian Sister. She and my sister Nina have been friends since junior high, so she has been a steadfast presence in our family for years. Like a fairy godmother, she descended upon us Tuesday afternoon with her world-famous creamy chicken soup, an armful of bright cheery flowers, and a Trader Joe's grocery bag filled with goodies. Her kindness and generosity of spirit are an inherent part of her character, which she wears like a crown and wand. We love you, Jennifer!
Much love to my friend Daphne who is a warrior woman in her own right. A true survivor in body and spirit. Adversity strengthens character, and she has her share of both in abundance-- but she became a diamond under the pressure instead of succumbing to it. Thank you for making a positive difference in my life!
Edith C, whose generous care package was so much more than comfort items to help me through treatment. I unwrapped a hug and countless smiles that nurtured me instead. The sheer thoughtfulness of your gift humbles me beyond words. Your acts of kindness are never random. Thank you.
Thank you Steve S. for the beautiful flowers and the more beautiful conversation we had. You have depth that must be committed to paper-- keep on writing!
Darren N. aka Dr. Gonzo...Thank you for the copy of Jack Kerouac's The Subterraneans and for the DVD. I now have "fear and loathing" of Johnny Depp's bald head & Benicio del Toro's rotund belly seared into my mind like a brand on cattle. Hope you enjoy the Banana Man.
Tabatha A, your impossibly cute cards cheer me up when I sift through piles of junk mail, ecstatic to find a handwritten envelope. Such treasures in the world of modern type. Thank you for the positive energy you send my way!
Toshi & Cherry Mae for making such an adorable baby together and for your very generous gift. Your little family is in my heart always.
Steve B. for crystallizing our friendship into a beautifully-written letter. This I will keep as a reminder that friends are those you bind to you despite busy schedules and geographical distance.
Tina C. for always being ready with a card or call; a friend with an ear to bend.
To many others who called, sent emails, mailed cards, stopped to visit, left messages on my blog. Thank you!
Much love to my friend Daphne who is a warrior woman in her own right. A true survivor in body and spirit. Adversity strengthens character, and she has her share of both in abundance-- but she became a diamond under the pressure instead of succumbing to it. Thank you for making a positive difference in my life!
Edith C, whose generous care package was so much more than comfort items to help me through treatment. I unwrapped a hug and countless smiles that nurtured me instead. The sheer thoughtfulness of your gift humbles me beyond words. Your acts of kindness are never random. Thank you.
Thank you Steve S. for the beautiful flowers and the more beautiful conversation we had. You have depth that must be committed to paper-- keep on writing!
Darren N. aka Dr. Gonzo...Thank you for the copy of Jack Kerouac's The Subterraneans and for the DVD. I now have "fear and loathing" of Johnny Depp's bald head & Benicio del Toro's rotund belly seared into my mind like a brand on cattle. Hope you enjoy the Banana Man.
Tabatha A, your impossibly cute cards cheer me up when I sift through piles of junk mail, ecstatic to find a handwritten envelope. Such treasures in the world of modern type. Thank you for the positive energy you send my way!
Toshi & Cherry Mae for making such an adorable baby together and for your very generous gift. Your little family is in my heart always.
Steve B. for crystallizing our friendship into a beautifully-written letter. This I will keep as a reminder that friends are those you bind to you despite busy schedules and geographical distance.
Tina C. for always being ready with a card or call; a friend with an ear to bend.
To many others who called, sent emails, mailed cards, stopped to visit, left messages on my blog. Thank you!
Tuesday, June 17, 2008
Continued Adventures in the Prius
Just a quick shout out to my good friend Tim who volunteered to come with me to treatment today. A reliable carpool buddy as always, he generously offered to drive me today in his sleek, eco-friendly Prius. Made a pit-stop at Cafe Ladro and enjoyed foamy, aromatic lattes in real cups & saucers with a slice of spinach & feta quiche as a chaser. Both of us sheepishly admitted it was our second breakfast. We cruised down the I-405 corridor to Evergreen Hospital, then on to Overlake in Bellevue. It amused me to no end to point out that it is the same route as our old commute together except the mission at hand involved hitting every major hospital on the way, evidently. Once there, we circled three floors of the parking garage before ending up with the spot right in front of the elevator.
The perfect little waiting room was introduced to Tim as a nascent celebrity entity of its own. The mini-fridge filled with apple, orange, grape, cranberry juice cups and massive amounts of Ensure. The demure, tasteful and comfortably worn magazines, and the chairs which own up to all the same adjectives. And the piece de resistance--the beautiful, secret Japanese waterfall and garden enclosed in the privacy of its own shrubbery, framed elegantly in the picture window. We settled in, discussed the merits of an Obama & Hillary ticket, the unequivocal evidence of global warming, the virtues of organic farming and pastoral rediscovery given the conspicuous accumulation of toxins in the ecosystem. Tim is a dependable conversationalist and I sincerely miss our daily intellectual interstate interchanges when we used to drive in to work together. Say that 3 times really fast...
Scheduling mix-up in radiation caused me to be late for my chemo appointment. Arrived at the infusion room to find all the nurses huddled together in their rolling office chairs, cheerfully greeting us. Tim was able to see the process involved in disconnecting the needle from my port and switching out my chemo cassette. We then went to Whole Foods to grab carry-out Indian food at the hot bar and Tim generously treated me to lunch. So after two hospitals and two meals, we called it a fairly good day together. Hope the Indian food didn't stink up the Prius too much...
The perfect little waiting room was introduced to Tim as a nascent celebrity entity of its own. The mini-fridge filled with apple, orange, grape, cranberry juice cups and massive amounts of Ensure. The demure, tasteful and comfortably worn magazines, and the chairs which own up to all the same adjectives. And the piece de resistance--the beautiful, secret Japanese waterfall and garden enclosed in the privacy of its own shrubbery, framed elegantly in the picture window. We settled in, discussed the merits of an Obama & Hillary ticket, the unequivocal evidence of global warming, the virtues of organic farming and pastoral rediscovery given the conspicuous accumulation of toxins in the ecosystem. Tim is a dependable conversationalist and I sincerely miss our daily intellectual interstate interchanges when we used to drive in to work together. Say that 3 times really fast...
Scheduling mix-up in radiation caused me to be late for my chemo appointment. Arrived at the infusion room to find all the nurses huddled together in their rolling office chairs, cheerfully greeting us. Tim was able to see the process involved in disconnecting the needle from my port and switching out my chemo cassette. We then went to Whole Foods to grab carry-out Indian food at the hot bar and Tim generously treated me to lunch. So after two hospitals and two meals, we called it a fairly good day together. Hope the Indian food didn't stink up the Prius too much...
Monday, June 16, 2008
Sunshine does a body good
Sunshine does a body good. We needed that extra dose of solar power this weekend to re-energize us and give us a fresh outlook on life. Peeling back the grey cloud cover, we discover why exactly they call Seattle the Emerald City. Sunday was glorious as we enjoyed a fantastic Father's Day BBQ at my dad's house in Puyallup and then had a second al fresco dinner at Winston's dad's house later. His stepmom, Pedie, presented us with an amazing meal and we were not in want that day of good food and great company. It was also my brother Zhivago's 33rd birthday. We grilled jumbo prawns, chicken, pork ribs and steaks, ate cheesecake and banana cream pie. We don't mess around when we picnic at my dad's house. I'm not allowed to eat some of that anymore since it can be hard on my GI tract while undergoing treatment. But it was some small consolation to stand there and inhale lungfuls of delicious, meaty aroma. My kids, half-sister, nephew and nieces ran amok under the sun, played happily on the play set and found simple joy in rolling around in the grass. I found a moment to be grateful that they were all born healthy and continue to be so in their childhood-- just so that they can enjoy days like this without having to discover yet what cancer is.
My dad has had time to adjust to my diagnosis and tells me that he's hopeful instead of oppressed by the knowledge of my illness. It was strange to be discussing my poor health with him instead of the other way around. He himself suffers from Type II diabetes and he described to me how he ignored or misinterpreted early signs and symptoms too. By the time my mom saw a doctor, her tumor proved aggressive and had metastasized eventually to her other organs. Good health is sometimes taken for granted, and we all feel the routine and drudgery of everyday life at times. But we experience an epiphany when we realize that even the mundane aspects of our daily lives can actually be welcome again in light of a tragic diagnosis. I've spoken to many cancer survivors and friends who are experiencing cancer through a close family member. My sincere and earnest hope is that those fighting this disease will triumph and get well again, and that those who still have their good health will do everything they can by choice to preserve it. These choices include quitting an unhealthy habit, eating better, going to their annuals and getting screened, and becoming aware and responsible when your body is talking to you. It's all part of living responsibly and early detection.
And although the sunshine is a rare gift this season, that too, must be enjoyed in moderation. Sunshine does a body good, but only if we break out the SPF 30.......
My dad has had time to adjust to my diagnosis and tells me that he's hopeful instead of oppressed by the knowledge of my illness. It was strange to be discussing my poor health with him instead of the other way around. He himself suffers from Type II diabetes and he described to me how he ignored or misinterpreted early signs and symptoms too. By the time my mom saw a doctor, her tumor proved aggressive and had metastasized eventually to her other organs. Good health is sometimes taken for granted, and we all feel the routine and drudgery of everyday life at times. But we experience an epiphany when we realize that even the mundane aspects of our daily lives can actually be welcome again in light of a tragic diagnosis. I've spoken to many cancer survivors and friends who are experiencing cancer through a close family member. My sincere and earnest hope is that those fighting this disease will triumph and get well again, and that those who still have their good health will do everything they can by choice to preserve it. These choices include quitting an unhealthy habit, eating better, going to their annuals and getting screened, and becoming aware and responsible when your body is talking to you. It's all part of living responsibly and early detection.
And although the sunshine is a rare gift this season, that too, must be enjoyed in moderation. Sunshine does a body good, but only if we break out the SPF 30.......
Thursday, June 12, 2008
The Waiting Room
Yesterday, had a mini-crisis on the way home from treatment. As I was getting on the freeway, I felt a warm drip under my shirt. Looking down, I noticed that my chemo catheter had come undone and there was blood in the line. Driving and freaking out at the same time, I kept looking under my shirt to see if I was bleeding at the surgical site. Nothing, just blood on one side of the line and clear liquid on the other. I turned around on the overpass and headed back to the hospital to get it checked out. Turns out, the needle in the port got jostled somehow and caused bleeding into my catheter. It eventually clotted in the line and then backed up the chemo medicine trying to come through. Nurses cleaned it up, gave me a saline flush and new bandages, turned the pump back on and I was back in business. Not fun.
Today, in the treatment waiting room there was a big crowd. All cancer patients waiting for their turn on the radiation machine, and all appeared to be in their 60s and 70s. Two of the ladies had on colorful scarves on their heads but dull, worn-out expressions on their face. I couldn't escape the absurd sensation that everyone was staring at me like I was intruding into a sacred circle of sick people. That waiting room is a kind of home at the hospital; with its comfortable chairs, ambient lighting and a serene Japanese-style water garden outside the picture window. Could they think I was an invader or tourist there to haughtily drink their apple juice and read from their magazines in my apparent state of youth and vitality? Once they heard my name called by the radiation tech and once they noticed the chemo pump on my shoulder, they seemed to settle into some kind of acknowledgment that my membership in this club was bought and paid for just as theirs was. There was no triumph for me in this, just as there was no unkindness intended on their part. We were all there to get well, and for a brief time, to share this small but pleasant waiting room where the paths of our individual cancers converged.
Today, in the treatment waiting room there was a big crowd. All cancer patients waiting for their turn on the radiation machine, and all appeared to be in their 60s and 70s. Two of the ladies had on colorful scarves on their heads but dull, worn-out expressions on their face. I couldn't escape the absurd sensation that everyone was staring at me like I was intruding into a sacred circle of sick people. That waiting room is a kind of home at the hospital; with its comfortable chairs, ambient lighting and a serene Japanese-style water garden outside the picture window. Could they think I was an invader or tourist there to haughtily drink their apple juice and read from their magazines in my apparent state of youth and vitality? Once they heard my name called by the radiation tech and once they noticed the chemo pump on my shoulder, they seemed to settle into some kind of acknowledgment that my membership in this club was bought and paid for just as theirs was. There was no triumph for me in this, just as there was no unkindness intended on their part. We were all there to get well, and for a brief time, to share this small but pleasant waiting room where the paths of our individual cancers converged.
Wednesday, June 11, 2008
Spoiler Alert: Too Much Information?
Yesterday, I had my first chemo cassette switched out for the week. My good friend Daphne met me in the infusion room at the doctor's office. As the nurses are changing the bandages & tubing around the surgical site, she noticed the sizable bump in my upper chest where the port went in. She said it was like a little mountain and the nurse laughed. I chimed in that the word mountain has never been used to describe any part of my chest. No bra possible for the past week due to what amounts to a construction zone on my chest, so when they changed out the bandages, I necessarily had to flash my boobs at the older gentleman sitting across the room in his own infusion chair. After having two kids, I've kind of lost my sense of modesty in medical situations but I could see that he was doing his best to be politely discreet by trying not to get caught like a deer in the headlights, so to speak.
Today, as I climbed onto the table for treatment #6 of 28, I was thinking it would be nice to lie facing up instead of always on my belly. The treatment room ceiling is made up of hundreds of tiny, sparkling lights meant to resemble a heavenly constellation field, but I don't ever get to enjoy that view. My head has to be down on one side, the same side, every single time for "the treatment position". I have to lie perfectly still so that they can line me up with the lasers using the 3 tattoos on my hips and backside as reference points...which means that my pants have to be slightly lowered and I'm doing my best plumber's crack impression for a room full of techs and physicists. Totally glamourous, right?? But I accept that it is what it is since cancer is never a beautiful thing; so I just pretend that I am lying in a tanning bed enjoying a brief nap since I'm getting zapped with rays anyway. No one is bringing me a mai tai or pina colada, but oh, the power of imagination to overcome Too Much Information. I warned ya.
Today, as I climbed onto the table for treatment #6 of 28, I was thinking it would be nice to lie facing up instead of always on my belly. The treatment room ceiling is made up of hundreds of tiny, sparkling lights meant to resemble a heavenly constellation field, but I don't ever get to enjoy that view. My head has to be down on one side, the same side, every single time for "the treatment position". I have to lie perfectly still so that they can line me up with the lasers using the 3 tattoos on my hips and backside as reference points...which means that my pants have to be slightly lowered and I'm doing my best plumber's crack impression for a room full of techs and physicists. Totally glamourous, right?? But I accept that it is what it is since cancer is never a beautiful thing; so I just pretend that I am lying in a tanning bed enjoying a brief nap since I'm getting zapped with rays anyway. No one is bringing me a mai tai or pina colada, but oh, the power of imagination to overcome Too Much Information. I warned ya.
Monday, June 9, 2008
Hope Floats
We lost my mom after her 2-year battle with colon cancer. She passed away one month before her first granchild was born-- my nephew, Connor. His ultrasound picture was the closest she would ever come to seeing her grandchild. Connor is now 12 years old. My brother Zhivago and his wife Toni have done an incredible job raising him to become a sweet and loving kid. My mom had five kids- me, Nina, Zhivago, and twins Mike & Jeff. There is an exquisite kind of pain in knowing that my mom is not around to know that I had twins of my own. In so many ways beyond articulation, I feel that some aspects of my life have eerily re-traced her own...but somehow I'm meant to absorb a profound lesson from her life and transcend the fate prepared for me in order to write a new one. I remember thinking often over the years that one day I would surpass my mom's age at the time of her death. There is a kind of hubris in assuming that I would age past my mom, even though the sentiment was borne innocently out of grief for a parent lost too soon. And the grim realization that I had to break the news of my diagnosis to my family, especially to my dad, was oppresive to me because it re-awakened the terrible sense of shared grief which had lain dormant for so many years. But despite the gravity of the circumstances, and the difficulties that lay ahead, I can still manage to count my blessings and recognize the good fortune I have in friends, family, and my children.
On my way to treatment today, I was stopped in the hallway by a stranger who knew my name. She caught me by surprise but she introduced herself as Kathy, the hospital social worker. She introduces herself to all the cancer patients in order to assess their emotional health, advise of cancer care resources, help with living directives such as a will or power of attorney, etc. She sat me down in a conference room and I sat facing the window. Outside the wind was blustering and the rain fell sideways, but there was a distant pocket of bright grey light due west. It's June, and outside people were bundled up like it was still January. Our conversation unfolded comfortably, and I found her to be compassionate and intuitive; but I couldn't help but look beyond her to the window where her head was framed by the relentless and driving rain. She asked about my kids, my husband, my family, my mom and even my friends. She said I was remarkably calm and composed. She asked me if I ever cried over this, and the bluntness of the question inserted silence into the room. She said it's ok to be strong for everyone else, but told me that if I hold all the stress in like a balloon, then it will only grow until it finally pops. I need to let a little air out every now and then, not all at once, but just enough so that I can find a healthy release. My sister once said that you can actually retain stress at the molecular level, so find a healthy outlet before it consumes you.
I am taking all this very seriously, but I also have chosen to be cheerful and cautiously optimistic every day-- trying to find humor and laughter too. I sincerely thank the countless techs, nurses and doctors who treat me daily because they are the people who are saving my life. I find unabated joy in my children and I bask in the comfort and love that is my family. I have deep gratitude for reliable old friends who have been there for years, a phonecall away. New friends who have shown their character and mettle in a time of need. Despite this terrible diagnosis, I feel truly blessed by the amazing people I have in my life. After my treatment, the rain finally stops and the sun is blazing for a brief moment. Even when you feel like you're drowning, hope floats.
On my way to treatment today, I was stopped in the hallway by a stranger who knew my name. She caught me by surprise but she introduced herself as Kathy, the hospital social worker. She introduces herself to all the cancer patients in order to assess their emotional health, advise of cancer care resources, help with living directives such as a will or power of attorney, etc. She sat me down in a conference room and I sat facing the window. Outside the wind was blustering and the rain fell sideways, but there was a distant pocket of bright grey light due west. It's June, and outside people were bundled up like it was still January. Our conversation unfolded comfortably, and I found her to be compassionate and intuitive; but I couldn't help but look beyond her to the window where her head was framed by the relentless and driving rain. She asked about my kids, my husband, my family, my mom and even my friends. She said I was remarkably calm and composed. She asked me if I ever cried over this, and the bluntness of the question inserted silence into the room. She said it's ok to be strong for everyone else, but told me that if I hold all the stress in like a balloon, then it will only grow until it finally pops. I need to let a little air out every now and then, not all at once, but just enough so that I can find a healthy release. My sister once said that you can actually retain stress at the molecular level, so find a healthy outlet before it consumes you.
I am taking all this very seriously, but I also have chosen to be cheerful and cautiously optimistic every day-- trying to find humor and laughter too. I sincerely thank the countless techs, nurses and doctors who treat me daily because they are the people who are saving my life. I find unabated joy in my children and I bask in the comfort and love that is my family. I have deep gratitude for reliable old friends who have been there for years, a phonecall away. New friends who have shown their character and mettle in a time of need. Despite this terrible diagnosis, I feel truly blessed by the amazing people I have in my life. After my treatment, the rain finally stops and the sun is blazing for a brief moment. Even when you feel like you're drowning, hope floats.
Saturday, June 7, 2008
1 week down....5 to go
About 3 weeks before I ever found out I had cancer, I went in for a haircut because my hair was down to the small of my back and the kids were practically swinging from it. I had an upcoming business trip to San Diego so I didn't want to do anything drastic, but I was ready for a new look. I asked them if they donated hair to Locks of Love-- a charity which donates real human hair to make wigs for cancer patients. They said they needed at least 10 inches for the donation to be viable. I was anxious because it would bring my hair up just under my ears if I cut it all off. But I told the stylist to go for it; so she put my hair into two pigtails and cut both off with sweeping clips. Just like that, she took 10 inches off and now it would become a wig for someone in need. How's that for foreshadowing??
So I gave myself a break yesterday because the cloud over my senses after the portacath surgery finally lifted. The port scar is healing, but the tape around it is starting to itch and I can't even scratch it. They used medical "super glue" to close the wound instead of stitches. I still feel generally more fatigued, but my mind is clearer and I seem to be coping well with the chemo medication. I have a small needle in my chest with tape and dressings around it. From this, there is long plastic tubing (kind of like what you see with an IV) which trails down from the port all along my right side and hooks up to a chemo pump. It resembles a giant iPod and fits inside a black satchel with a strap on it. I have to wear it on my shoulder 24/7 and be careful not to tangle up the tubes when I sleep at night. Inside the pump is a "cassette" which houses the chemo medicine in a small plastic pouch. It is a 100mL reservoir and the pump automatically delivers about 14mL of chemo into my bloodstream every 24 hours. When the medicine is pumped, it makes a camera shutter sound which I've learned to become oblivious to. Every Tuesday, I go into the oncologist's office and they switch out the empty cassette for a new one for the next week. I'm not expected to lose a lot of hair since the chemo is a low continuous dose over a long period of time, and the radiation therapy is targeting my lower body instead. But I was thinking how funny it would be if I ended up getting a wig made of my own donated hair......
So I gave myself a break yesterday because the cloud over my senses after the portacath surgery finally lifted. The port scar is healing, but the tape around it is starting to itch and I can't even scratch it. They used medical "super glue" to close the wound instead of stitches. I still feel generally more fatigued, but my mind is clearer and I seem to be coping well with the chemo medication. I have a small needle in my chest with tape and dressings around it. From this, there is long plastic tubing (kind of like what you see with an IV) which trails down from the port all along my right side and hooks up to a chemo pump. It resembles a giant iPod and fits inside a black satchel with a strap on it. I have to wear it on my shoulder 24/7 and be careful not to tangle up the tubes when I sleep at night. Inside the pump is a "cassette" which houses the chemo medicine in a small plastic pouch. It is a 100mL reservoir and the pump automatically delivers about 14mL of chemo into my bloodstream every 24 hours. When the medicine is pumped, it makes a camera shutter sound which I've learned to become oblivious to. Every Tuesday, I go into the oncologist's office and they switch out the empty cassette for a new one for the next week. I'm not expected to lose a lot of hair since the chemo is a low continuous dose over a long period of time, and the radiation therapy is targeting my lower body instead. But I was thinking how funny it would be if I ended up getting a wig made of my own donated hair......
Thursday, June 5, 2008
Cancer Awareness & Survivor Stories
Dear Friends & Family,
There are many of you out there who have been touched by cancer through a family member or who are cancer survivors yourselves. Please e-mail me at dilebob@yahoo.com to share your story, and let me know if you want to share your story with a wider audience. I can keep your name anonymous if you wish. Please, remember to take good care of yourselves!
From the American Cancer Society website: http://www.cancer.org/docroot/home/index.asp
Who Gets Cancer?
Over one million people get cancer each year. Approximately one out of every two American men and one out of every three American women will have some type of cancer at some point during their lifetime. Anyone can get cancer at any age; however, about 77% of all cancers are diagnosed in people age of 55 and older. Although cancer occurs in Americans of all racial and ethnic groups, the rate of cancer occurrence (called the incidence rate) varies from group to group.
Today, millions of people are living with cancer or have been cured of the disease. The sooner a cancer is found and the sooner treatment begins, the better a patient's chances are of a cure. That's why early detection of cancer is such an important weapon in the fight against cancer.
There are many of you out there who have been touched by cancer through a family member or who are cancer survivors yourselves. Please e-mail me at dilebob@yahoo.com to share your story, and let me know if you want to share your story with a wider audience. I can keep your name anonymous if you wish. Please, remember to take good care of yourselves!
From the American Cancer Society website: http://www.cancer.org/docroot/home/index.asp
Who Gets Cancer?
Over one million people get cancer each year. Approximately one out of every two American men and one out of every three American women will have some type of cancer at some point during their lifetime. Anyone can get cancer at any age; however, about 77% of all cancers are diagnosed in people age of 55 and older. Although cancer occurs in Americans of all racial and ethnic groups, the rate of cancer occurrence (called the incidence rate) varies from group to group.
Today, millions of people are living with cancer or have been cured of the disease. The sooner a cancer is found and the sooner treatment begins, the better a patient's chances are of a cure. That's why early detection of cancer is such an important weapon in the fight against cancer.
Wednesday, June 4, 2008
The Giant Kitchen-Aid
Today's treatment was a bit of a disaster. Lucky for me, my sister Nina came with me to see the chaos unfold. She offered to drive me to my radiation appointment today since I was still a little sore & groggy from my surgery yesterday. Unfortunately, due to some "technical difficulties" with the radiation machines, we had to wait for almost 2 hours before I could get into the treatment room. Because I'm being treated for a 4cm tumor, the treatment field is very precise and the radiation machines are calibrated specifically for my body. I have 3 tiny dots that were actually tattooed on my hips and my backside so that they can line me up exactly the same way each time. Nina remarked right away that the machine looked like a giant Kitchen-Aid mixer without the bowl. Are you visualizing this? As it were, I have to lie down on a long table over a "belly board" which allows my tummy to drop into the opening so that gravity will help pull my healthy organs away from the treatment site. The idea is to minimize collateral damage to other organs from the radiation. They also told me I have to arrive with a full bladder which further helps to distend my bowels away from the radation field. So, I'm lying on my belly, with a fresh & still painful portacath surgery scar on my chest, full bladder, totally uncomfortable, but having to hold absolutely still so that the dots are lined up on the machine. After about 10 minutes, the tech comes in and says that they weren't able to take the films or start the radiation beams due to the previously mentioned technical difficulties. They switched me to another machine, same process, and still no luck because the software has a safeguard which protects the system from running duplicate treatments for the same patient profile in any given day. The techs were mortified and so apologetic, so I couldn't get upset with them. But the treatment didn't happen today. Only 2 days into my regimen and it was a total bust already. I didn't care-- I really had to pee......We'll try again tomorrow.
Tuesday, June 3, 2008
It Finally Sinks In
First day of treatment....it finally sinks in. Long day today. Had to have a portacath installed in my upper chest. The port is a small medical device that they can implant under your skin. It has a catheter that goes into your vein and a septum that can be used to inject drugs or draw blood without continuously pricking you with a needle. I had one installed for the purpose of receiving my chemo medicine, which will be hooked up through the port on a continuous pump, 24/7. A nurse came in and showed me what it was and how it works. I was amused to find that it is made of an irridescent hot pink titanium, and I told the nurse so. Her dry response was- it will be under your skin and no one will notice what color it is. But it's larger and heavier than you would think, even though I was told that I have the raciest new model available. Since I would be sedated for the semi-surgical procedure, I was not allowed to drive myself today and my awesome sister-in-law, Toni, came up in the driving rain from Lake Stevens to haul me around to my appointments in Bellevue. She's pretty much the best sister-in-law ever, and I'll be sure to remind my brother often, heh.
The doctor who performed the surgery is named Dr. Frantz Pierre-Jerome. Based on his name alone, I was expecting a tall, blond, blue-eyed man of Germanic descent, but instead he was a quite handsome African-American man with just an interesting name. The nurses referred to him as "PJ" when he wasn't in the room. He performed the surgery without a hitch and they told me that I woke up from the anesthetic and calmly announced, "I'm awake" before they had finished. The nurse asked me if I remembered saying that, and I said, "Nope!" I was a little loopy-dee-loo from the sedation and didn't quite come out of that cloud until later in the evening when it finally wore off. Dr. Pierre-Jerome told me that my oncologist, Dr. Kathryn Crossland, is the doctor of the doctors- so when doctors or their families get cancer, she's the one who treats them. Is that a ringing endorsement or what? It also turns out that my radiation oncologist, Dr. Eric Taylor, knows Winston's dad, who was the head surgeon at Virginina Mason before he retired, and he worked closely with his own dad, Dr. Willis Taylor. I have a great medical team, so I'm staying cautiously optimistic because I'm in good hands, apparently.
I heard from a few good friends today and saw some comments on the blog, so thank you for your well-wishes! I hope you can back for visits and updates. This blog kind of my cancer "diary" so that everyone can stay updated without me or my sister explaining the treatment progress ad nauseum. If I make it through, it will be a nifty little souvenir of my survivor experience. If I don't, then all of you (and Rowan & Spencer) will be able to know and understand exactly what happened to me, unlike us with our mom. Sometimes, I feel sharing this knowledge with people is strange and burdensome and I shouldn't be doing it. I don't want to make anyone uncomfortable or obligated. But I also feel that I am choosing the right people to tell. I would rather have my friends stand up for me while I'm around and while they still have an opportunity to than to have a whole room of friends at my funeral, you know? Love you all!
The doctor who performed the surgery is named Dr. Frantz Pierre-Jerome. Based on his name alone, I was expecting a tall, blond, blue-eyed man of Germanic descent, but instead he was a quite handsome African-American man with just an interesting name. The nurses referred to him as "PJ" when he wasn't in the room. He performed the surgery without a hitch and they told me that I woke up from the anesthetic and calmly announced, "I'm awake" before they had finished. The nurse asked me if I remembered saying that, and I said, "Nope!" I was a little loopy-dee-loo from the sedation and didn't quite come out of that cloud until later in the evening when it finally wore off. Dr. Pierre-Jerome told me that my oncologist, Dr. Kathryn Crossland, is the doctor of the doctors- so when doctors or their families get cancer, she's the one who treats them. Is that a ringing endorsement or what? It also turns out that my radiation oncologist, Dr. Eric Taylor, knows Winston's dad, who was the head surgeon at Virginina Mason before he retired, and he worked closely with his own dad, Dr. Willis Taylor. I have a great medical team, so I'm staying cautiously optimistic because I'm in good hands, apparently.
I heard from a few good friends today and saw some comments on the blog, so thank you for your well-wishes! I hope you can back for visits and updates. This blog kind of my cancer "diary" so that everyone can stay updated without me or my sister explaining the treatment progress ad nauseum. If I make it through, it will be a nifty little souvenir of my survivor experience. If I don't, then all of you (and Rowan & Spencer) will be able to know and understand exactly what happened to me, unlike us with our mom. Sometimes, I feel sharing this knowledge with people is strange and burdensome and I shouldn't be doing it. I don't want to make anyone uncomfortable or obligated. But I also feel that I am choosing the right people to tell. I would rather have my friends stand up for me while I'm around and while they still have an opportunity to than to have a whole room of friends at my funeral, you know? Love you all!
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