Some of my favorite people died within the last month. Seven of my favorite people, to be inexact. I only started counting when the death notices started to become overwhelming. I have unsent cards on the kitchen table meant for some of these people. I have not only grief because these people will be missing from my life, but also regret because these people will never know what I meant to say. Or maybe my regret is not that my thoughts and feelings were not heard, but that I never expressed my thoughts. Those thoughts and feelings are still inside my heart, the potential to interact forever gone. By withholding my thoughts, I didn't fully participate in their lives. I failed to engage in life when I had the chance. Particularly inexcusable because of my status as a Cancer Survivor.
I have been surviving with cancer for almost 4 years now. I would like to say I have been living with cancer. I like to think I have mastered the diagnosis-thing, the treatment-thing, the patient-thing and the dying-thing. The living-thing that happens between all those other things gets lost. My life has narrowed as my body has become less reliable. I am most comfortable closer to home these days. I have been searching to redefine living. I get out of the house most days. I make sure I have activities on the calendar. I go places and see things. I show up. That's not quite enough. As I walk by that pile of unsent cards on the kitchen table for the umpteenth time, I realize what has been lacking. I need to engage, to lean-in. (Pop psychology reference intended.)
I am a reluctant Cancer Survivor. As I move further from my diagnosis date, as I survive longer, I feel the weight of expectations settle around me. I know the statistics, about 70% of my fellow sisters won't be survivors 5 years after their diagnosis. I look around me and watch my sisters fall. It seems that many fall in their 6th year. Will I? Will we die in vain? Can I carry the memory of their existence? How many can I carry before the weight overcomes me? Why is ovarian cancer still so deadly? What can the few survivors do to change that for the future? Will we live long enough to accomplish anything? I don't have enough time. So why even try? So I don't. I haven't. I don't want the job of Cancer Survivor.
Yet I have the job. I have been in training under the protective wings of my sisters who have traveled this path before me. It's my turn now to mentor. I probably won't start a charitable foundation or discover a cure. My job might be smaller in scope, but not importance. My job is to engage. Engaging in human contact is living. I can offer an example of how to live with cancer by actually doing it. I can show up at support group meetings and share a story that will bring a smile and hope to someone newly diagnosed. I can share my medical knowledge and help someone get the care they need. I can reach out and offer human kindness. I can actually mail those cards on the kitchen table.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, January 22, 2014
Monday, September 30, 2013
Setback, again
Today, many thoughts and feelings are swirling around in this head o'mine. Heck, not just today but the last few weeks. One will circle and land for awhile, almost long enough for me to get a handle on it, then its gone, only to be replaced by the next. One theme, that seems to be revisiting again and again, is "how do I live with this thing called cancer in my body?"
I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.
One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope. As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months? It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.
One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer. My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess. I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.
One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70. I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration. They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is not alone. In the meantime, I'll go back to living my life.
I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.
One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope. As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months? It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.
One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer. My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess. I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.
One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70. I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration. They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is not alone. In the meantime, I'll go back to living my life.
Sunday, September 1, 2013
September
September is my birthday month! Yay! I'm going to be 50! Yay! A friend asked me how I felt about being 50. Now, I know that many people are upset over being half-a-century old, mainly because 50 is, well, old. I know that nobody wants to be old. That is nobody except me, I want to be old. I have always wanted to be that kooky, funky, yet hip, old lady. I am starting early because my time frame has shifted. I always thought I would live to be 88 and planned my life as such. However, as you know, things have changed a little bit. I get to be kooky, funky, yet hip, now. I remember a time when I didn't know if I would live this long. I did! I am 50! Let the kooky, funky, yet hip begin....
But before all that begins, I feel the need to share this....
Ovarian cancer is relatively rare. About 1 in 70 will develop ovarian cancer. In comparison, about 1 in 8 women will develop breast cancer. Despite it's rarity, ovarian cancer is deadly. Of those diagnosed, about 30% will be alive 5 years later. In comparison, of those diagnosed with breast cancer, about 85-90% will survive those 5 years. Ovarian cancer has a high fatality rate probably because the majority of cases are not found until the disease has spread throughout the abdomen. This is Stage 3 cancer and most of us, about 80%, are diagnosed at this stage or later, Stage 4. There is no Stage 5. The answer seems simple, find the cancer earlier.
Ovarian cancer has long been called the "silent killer", presumably because it has no symptoms until its too late. There is no current screening test. I am here to tell you that there are symptoms and signs. Ovarian cancer is not silent, but it whispers, so you have to pay attention. Pay attention to these things:
1. Bloating
2. Pelvic or abdominal pain
3. Difficulty eating, feeling full quickly
4. Urinary changes, urgency and/or pressure in the absence of infection.
5. Fatigue
These symptoms could happen to any of us on a bad day. The key is frequency. If you have these symptoms almost daily for more than 14 days each month, please see your doctor. Ask your doctor to tell you why you do not have ovarian cancer. Ask for a pelvic/rectal exam, a blood test called CA-125, and a trans vaginal ultrasound if warranted.
Be your own advocate. This disease can be curable if found early. Most of us living with ovarian cancer would tell you that our own conditions worsened as we slogged our way through the medical system looking for a diagnosis. Most of us did not push for tests or answers. We did not know that we were dealing with ovarian cancer. We did not know the symptoms. This is the real reason why ovarian cancer is a silent killer, nobody talks about it. I'm talking about it. I'm telling you my experiences so that you don't have to repeat those same experiences. I did not know. Now you know. Use your knowledge. Tell a sister, tell a friend, tell a daughter, tell a mother, tell every woman!
For further information, please visit ovarian.org
Tuesday, July 9, 2013
Hope through Reiki
My health center, the Institute for Cancer and Center of Hope, offers Reiki sessions at no charge for those in cancer treatment. Reiki is a Japanese spiritual practice of hands-on healing that transfers universal energy, known as chi, through the palms of the practitioner to the body of the patient in the belief that such energy can promote healing and equilibrium. (Don't be distracted by the terminology, which in this case is eastern Buddhist. If you want western Christian terminology, Reiki is where a healer lays his hands on a believer and heals him through the power and spirit of God. Same thing.) I have had 2 sessions and have an appointment this afternoon for my third.
At the least, my sessions have provided an hour of relaxation and distraction from my disease. At the most, my sessions have given me moments of inspiration, flashes of understanding, where the meaning of the whole is suddenly clear. These moments are fleeting, but unforgettable. My written words will do little justice to the power of the moment, in the same way a photograph cannot wholly convey an experience. I will try, none the less.
I seek healing. Notice I do not say "cure". Healing is about my body and my spirit. The body and spirit are complexly intertwined and feed each other. Physical pain can damage your spirit and spiritual pain can damage your body. Think about the last time you had a toothache and how grumpy you were because of the pain. It's that simple. Just as I would seek to treat the pain in my body with analgesics, I seek to treat the pain in my spirit, to heal my spirit in order to bring balance into my body (and heal my body) simultaneously. It's simple, but not easy.
My sessions have helped me realize that I have some anger hiding in there. Anger at being sick, anger at my setback, anger at myself for letting myself slip back. How silly, I am mad at myself for letting me get cancer, again. Now that I can see that, I can acknowledge it and let go of anger's damaging effects. I have been depressed, sulky, ungracious and miserable these past few months. These are all outward expressions of my anger, I am acting out. My belly has been miserable too. I have painful cramping, sudden diarrhea, excess acid, general indigestion. I now chose to let go of my anger. When I notice my angry behavior, I can stop. I can change my focus to my target and find some compassion. My selfish anger can go. I can be done with that and I can heal. I can heal. Imagine that.
P.S. Imagining healing restores my hope. I didn't recognize that my hope was lost until this moment. Wow. My heart just might burst open. Um, thanks for listening to my breakthrough.
At the least, my sessions have provided an hour of relaxation and distraction from my disease. At the most, my sessions have given me moments of inspiration, flashes of understanding, where the meaning of the whole is suddenly clear. These moments are fleeting, but unforgettable. My written words will do little justice to the power of the moment, in the same way a photograph cannot wholly convey an experience. I will try, none the less.
I seek healing. Notice I do not say "cure". Healing is about my body and my spirit. The body and spirit are complexly intertwined and feed each other. Physical pain can damage your spirit and spiritual pain can damage your body. Think about the last time you had a toothache and how grumpy you were because of the pain. It's that simple. Just as I would seek to treat the pain in my body with analgesics, I seek to treat the pain in my spirit, to heal my spirit in order to bring balance into my body (and heal my body) simultaneously. It's simple, but not easy.
My sessions have helped me realize that I have some anger hiding in there. Anger at being sick, anger at my setback, anger at myself for letting myself slip back. How silly, I am mad at myself for letting me get cancer, again. Now that I can see that, I can acknowledge it and let go of anger's damaging effects. I have been depressed, sulky, ungracious and miserable these past few months. These are all outward expressions of my anger, I am acting out. My belly has been miserable too. I have painful cramping, sudden diarrhea, excess acid, general indigestion. I now chose to let go of my anger. When I notice my angry behavior, I can stop. I can change my focus to my target and find some compassion. My selfish anger can go. I can be done with that and I can heal. I can heal. Imagine that.
P.S. Imagining healing restores my hope. I didn't recognize that my hope was lost until this moment. Wow. My heart just might burst open. Um, thanks for listening to my breakthrough.
Monday, February 4, 2013
Fragile
I am fragile tonight. I walk tough and talk tough and usually am tough, but tonight I am fragile. This is the eve of my meeting with my oncologist. The meeting where he reveals to me the results of my CT scan 11 long days ago. I have filled up those days with chores and errands and lunches and day trips. I have new eyeglasses, pretty funky ones I might add. I have clean teeth and gums. I have current insurance policies. I had some fun times these last 11 days. I saw a favorite songwriter perform live. I traveled to a new place for a day. I spent an afternoon walking by the lake, twice. I did all these things to bolster myself. To provide some kind of framework to hang onto. It worked, mostly. There are cracks. I have cracks.
This scan is to reveal the size of my nodule. That's the word they said, nodule. I hear, small. I hope small. I can do small. But what if ...... I can't say it. I thought I had a handle on this. I thought that when I had a recurrence of my ovarian cancer, I would be oh-so-sophisticated about it, so cool and composed. I have done this before, after all. I was pretty tough about my chemo treatments before as well. I would check my go-bag for water, book, tissues, crackers, mints, lip balm. I would dress in comfortable clothes but be sure to wear short sleeves to allow IV access. I took extra care to be oh-so-controlled. I would drive to the hospital, park in my usual area, gather my bags, walk down the stairs, across the street, down the hall, greeting all with a smile and a warm hello. I would make my way to the elevator, push the call button and wait. That's when I just knew that all the eyes in the waiting room behind me were looking at me, they knew I had cancer, they knew I was going to get my chemo upstairs. I would look around, smile and say something friendly to those eyes that weren't really looking at me. The elevator would arrive, the doors would slide open with that swoosh sound, and I would take that big big step inside. The tears would fall then. Always in the elevator. Sometimes other places too, especially towards the end, but always in the elevator.
So tonight I find myself in a figurative elevator, wondering to which floor I will travel. Surgery? Outpatient infusion? I am delicately bonded together by all my activity of these last 11 days. I am preparing for the worst, while hoping for the best. The dread of what my dear oncologist may say to me has my belly in a tight ball of pain. So, please, dear doctor, be gentle with me tomorrow. I am so in control that I might shatter when I hear your words.
This scan is to reveal the size of my nodule. That's the word they said, nodule. I hear, small. I hope small. I can do small. But what if ...... I can't say it. I thought I had a handle on this. I thought that when I had a recurrence of my ovarian cancer, I would be oh-so-sophisticated about it, so cool and composed. I have done this before, after all. I was pretty tough about my chemo treatments before as well. I would check my go-bag for water, book, tissues, crackers, mints, lip balm. I would dress in comfortable clothes but be sure to wear short sleeves to allow IV access. I took extra care to be oh-so-controlled. I would drive to the hospital, park in my usual area, gather my bags, walk down the stairs, across the street, down the hall, greeting all with a smile and a warm hello. I would make my way to the elevator, push the call button and wait. That's when I just knew that all the eyes in the waiting room behind me were looking at me, they knew I had cancer, they knew I was going to get my chemo upstairs. I would look around, smile and say something friendly to those eyes that weren't really looking at me. The elevator would arrive, the doors would slide open with that swoosh sound, and I would take that big big step inside. The tears would fall then. Always in the elevator. Sometimes other places too, especially towards the end, but always in the elevator.
So tonight I find myself in a figurative elevator, wondering to which floor I will travel. Surgery? Outpatient infusion? I am delicately bonded together by all my activity of these last 11 days. I am preparing for the worst, while hoping for the best. The dread of what my dear oncologist may say to me has my belly in a tight ball of pain. So, please, dear doctor, be gentle with me tomorrow. I am so in control that I might shatter when I hear your words.
Saturday, May 26, 2012
Weekend of Hope
At the beginning of this month, I was able to travel to Vermont for the Annual Stowe Weekend of Hope. I experienced a weekend of health, hope, inspiration, learning and fellowship with cancer survivors, their friends and families, and the people of Stowe. Met some great people doing great things. Tried watercolor painting. Tried hula hooping. Visited Ben and Jerry's Ice Cream factory. Spent an hour with a Buddhist monk. Tried the local brew. Ate more than my share of truly delicious bagels. Hiked the morning dew at the Trapp Family Lodge. Hung Buddhist prayer flags. Toured the local ghosts in the misty night of the full supermoon. Had fun! In the midst of all this fun activity, however, lay the kernel for what I am searching. I was moved by the vitality surrounding me. Everybody I saw was affected by cancer. We had an unspoken kinship from which to move forward. I liken the feeling to the moment the bee-girl finds her own kind in that video by Blind Melon. This moment....
What's so powerful about a moment like this? The recognition without explanation. The acceptance without speaking. The mere fact that you are not alone. The connection. Someone else knows what happened to you because it happened to them. We all have common ground. We can move on now. And we did. The closing ceremony was a program of exuberance for life. Young dancers who chose not a dark inward somber piece, but a colorfully strong flowing life reinforcing piece. Local singers and songwriters who performed songs of healing and connection. There's that word again, connection. It's important. Connection to each other, connection to your feelings, connection to your body, connection to life.
The very last performance was a song that I heard several times that weekend already. The first performance my eyes teared up a little, with a touch of sadness. The second performance my eyes rolled, with a touch of anger. This final performance my eyes flowed, with overwhelming release. I liken it to the moment the crisis breaks, when you realize it's over, you made it, you're okay and you burst into tears. That moment. I want to share that song with you now. Maybe it will have some power for you, maybe not. And that's okay....
Peace. Love. Ice Cream.
Saturday, December 3, 2011
Hope
Playing Scrabble this evening. Down to the last 4 tiles. Look down and there it is...........
H O P E. No arranging, just there, as a reminder. You always have hope.
H O P E. No arranging, just there, as a reminder. You always have hope.
Thursday, January 13, 2011
Today I will.....
I stare at my keyboard. It's not for want of words, but because of a bounty of words. My notes on ideas litter the house. My trouble comes when I try to distill my thoughts and ideas into a clear concise blog post. I don't want to be a whiner. I don't want to be falsely upbeat either. I just want to be genuine. I page through the notebooks and scraps of paper looking for a theme. Little snippets quickly scrawled before the thought escapes. Notes on treatment, notes on life, notes on words, notes on spirituality, notes on perceptions, notes on emotions, notes and notes and notes and notes. I find it impossible to pick just one note. These notes all work together, they overlap and complement each other. I cannot pluck one note and expect to be able to convey the complexity of the whole symphony.
I think I am onto something here. Cancer is big, but it's a billion little things assembled that are impossible to know quickly. Those little pieces will factor into every decision made for the rest of your life. The decision may be as simple as what to eat for breakfast, what clothes to wear, what to do that day. My cancer rides on my shoulder, whispering in my ear all day. It says "Eat high fiber grains for breakfast to avoid a bowel obstruction and a trip to the hospital". It says "Wear your warm hat because you will get cold because you still have no hair because you had chemo". It asks "Do you have enough energy to be away from home for 6 hours? How about your bowel? Can you be that far from a toilet today?" It's a nag. It's my constant companion and cannot be ignored for very long.
So, I have managed to pluck a few little notes after all. This is the morning routine at my house as I live it day by day. I have found that is the only way to live with cancer, one day at a time. I am reminded of the old joke that asks how to eat an elephant. The answer is that you eat one bite at a time. So, I will continue to share my elephant of a story with you, one day at a time, one bite at a time.
I think I am onto something here. Cancer is big, but it's a billion little things assembled that are impossible to know quickly. Those little pieces will factor into every decision made for the rest of your life. The decision may be as simple as what to eat for breakfast, what clothes to wear, what to do that day. My cancer rides on my shoulder, whispering in my ear all day. It says "Eat high fiber grains for breakfast to avoid a bowel obstruction and a trip to the hospital". It says "Wear your warm hat because you will get cold because you still have no hair because you had chemo". It asks "Do you have enough energy to be away from home for 6 hours? How about your bowel? Can you be that far from a toilet today?" It's a nag. It's my constant companion and cannot be ignored for very long.
So, I have managed to pluck a few little notes after all. This is the morning routine at my house as I live it day by day. I have found that is the only way to live with cancer, one day at a time. I am reminded of the old joke that asks how to eat an elephant. The answer is that you eat one bite at a time. So, I will continue to share my elephant of a story with you, one day at a time, one bite at a time.
Tuesday, October 19, 2010
Searching.............
I'm floundering. I'm not sure I know how to live the rest of my life. I have been through the "mother-of-all-surgeries" and learned that my body is resilient and can heal. I have been through chemotherapy and learned that I have strength. I have been through the weekly blood draws, the neutropenia, the thrombocytopenia, the blood transfusions, the nausea, the vomiting (only once), the aching bones, the sleepless nights, the relentless hot flashes, the loss of ALL my hair (everything except eyelashes) and I have persevered. I have changed the way I eat in order to more fully nourish my stressed body. I have learned how to care for Oscar, my ostomy. Believe me, when you get to empty Oscar's little collection pouch 6 times a day, you get to witness first hand the results of your food choices. (Choose wisely, my friend.) I have pampered my body, focusing on it's every need for 6 months now. And we have acheived some degree of stasis and established a new status quo, a new "normal". But I think I have forgotten how to live.
Cancer is a word that brings one thought to mind, death. My cancer diagnosis did that to me. I learned about estate planning, advanced directives, durable powers-of-attorney, wills, all that stuff. I told my financial advisor that I needed to cash out all my savings. (She talked me out of it.) I thought of all the things I hoped to do in my retirement years and paniced when I realized that my time would expire before I was done. I am not afraid to die and I was preparing to do just that. I was focusing on my death.
Fast forward 6 months to today. While I recognize that ovarian cancer will eventually kill me, it won't kill me today. And probably not even tomorrow or next week or next month. I have time. I am not sure what to do with that time. My doctor told me today "Do not forget to live." What if I have already forgotten? How do I remember? I don't know yet. I don't even know what to do this afternoon. I can't even think of a pithy title for this entry.
Cancer is a word that brings one thought to mind, death. My cancer diagnosis did that to me. I learned about estate planning, advanced directives, durable powers-of-attorney, wills, all that stuff. I told my financial advisor that I needed to cash out all my savings. (She talked me out of it.) I thought of all the things I hoped to do in my retirement years and paniced when I realized that my time would expire before I was done. I am not afraid to die and I was preparing to do just that. I was focusing on my death.
Fast forward 6 months to today. While I recognize that ovarian cancer will eventually kill me, it won't kill me today. And probably not even tomorrow or next week or next month. I have time. I am not sure what to do with that time. My doctor told me today "Do not forget to live." What if I have already forgotten? How do I remember? I don't know yet. I don't even know what to do this afternoon. I can't even think of a pithy title for this entry.
Monday, October 11, 2010
Bad Days Happen Too
I want to thank everyone who reads these things. I try to keep a positive spin on things when I am writing. Doing that helps me help myself. It teaches me how to focus on the positive side. But sometimes I fail. Sometimes I have bad days. I feel the need to share those days too. I want to represent a more accurate capsule of my existence. Ready, go.....
All this chemo is finally catching up to me. I left the house to have lunch and go shopping with my cousin and somewhere picked up a cold. I have very few white blood cells, thus no immunity, so it wasn't very hard to get sick. I avoid crowds of people because they are so...germy. I am kicking myself for obviously dropping my guard and neglecting my sanitizer. I have been taking iron tablets because I don't have any red blood cells either and those tablets make me really nauseous. Then I take my nausea meds and those make me really tired. Throw some cold medication on top of that and I am useless for hours. I had to drag my pitiful body to the lab twice today. I used to park in the farthest spot and walk to get some exercise. Today I parked right by the elevator. I am short of breath and tired and pale white. It turns out that I have even fewer red blood cells than I thought, my doctor has ordered a transfusion of 2 units of blood. I look like a ghost, a bald ghost. I am the same color I remember being before my surgeries. This makes me worry about the cancer becoming resistant to treatment and growing again. I am actually relieved to find out I only need some red blood cells. If I can only make it until tomorrow, because I feel like a wet pile of noodles. I am emotionally friable and cry at the drop of a kind word. And I have a huge spider bite on my elbow.
Whew, that's it. Thanks for reading.
All this chemo is finally catching up to me. I left the house to have lunch and go shopping with my cousin and somewhere picked up a cold. I have very few white blood cells, thus no immunity, so it wasn't very hard to get sick. I avoid crowds of people because they are so...germy. I am kicking myself for obviously dropping my guard and neglecting my sanitizer. I have been taking iron tablets because I don't have any red blood cells either and those tablets make me really nauseous. Then I take my nausea meds and those make me really tired. Throw some cold medication on top of that and I am useless for hours. I had to drag my pitiful body to the lab twice today. I used to park in the farthest spot and walk to get some exercise. Today I parked right by the elevator. I am short of breath and tired and pale white. It turns out that I have even fewer red blood cells than I thought, my doctor has ordered a transfusion of 2 units of blood. I look like a ghost, a bald ghost. I am the same color I remember being before my surgeries. This makes me worry about the cancer becoming resistant to treatment and growing again. I am actually relieved to find out I only need some red blood cells. If I can only make it until tomorrow, because I feel like a wet pile of noodles. I am emotionally friable and cry at the drop of a kind word. And I have a huge spider bite on my elbow.
Whew, that's it. Thanks for reading.
Monday, October 4, 2010
Befriending My Body
I was angry at my body for awhile. I felt betrayed. I felt like I certainly didn't deserve cancer. The risk factors for ovarian cancer include a positive family history, having BRCA1 or BRCA2 genes, age, not having children, taking fertility drugs, taking estrogen post-menopause, and obesity. Out of all those things, I am only guilty of not having any children and having plenty of fat. I score 2/7. I know plenty of fat women without kids who do NOT have ovarian cancer. Why me? Who knows? I hated the cancer cells in my body. I wanted them scraped out and burned. I wanted those cells destroyed. Cancer was an opponent, an enemy to be fought and conquered. Cancer put me on the defensive. Cancer eclipsed my self.
Sometime after surgery, I studied my body in the mirror. My gosh, my scar ran from my sternum all the way down to my pudendum (my girlie parts). 13 inches of bright red scar tissue railroad-marked with 2 sets of staple scars. I have a stab scar from my drain. I have 2 more stab scars from the laprascopy. My belly button is MIA. And my horrible gaping ostomy and fistula are the stars of my belly. These scars hold my belly together, while my body slowly fills in the hollows where tumors used to reside. Cancer left me empty.
One day while driving home from the grocery, it dawned on me. My body has started to heal. After 3 surgeries and weeks of wound care and weeks of bloodtests and chemotherapy, my body needs a friend. My body needs an ally. I need to nurture this body. Treat it kindly. It did not deserve cancer, but it definitely deserves a break. That's the day I gave up my anger and hatred. I have taken up the task of advocacy for my tattered body. I feed it the best nutrients. I give it all the rest it needs. I make it flex it's muscles now and then. I switched game plans from the defensive to the offensive. It feels much calmer on this side. I am better able to be my own friend. I am reunited with my body now, we are one and the same. I might even be better than I was before this all started. I am transforming Cancer by stealing his energy (why is Cancer male? Don't know, but he is) and funneling it into my own plan for me, myself and I. Cancer is not my friend, but he has given me impetus to being a more positive person. I win!
Sometime after surgery, I studied my body in the mirror. My gosh, my scar ran from my sternum all the way down to my pudendum (my girlie parts). 13 inches of bright red scar tissue railroad-marked with 2 sets of staple scars. I have a stab scar from my drain. I have 2 more stab scars from the laprascopy. My belly button is MIA. And my horrible gaping ostomy and fistula are the stars of my belly. These scars hold my belly together, while my body slowly fills in the hollows where tumors used to reside. Cancer left me empty.
One day while driving home from the grocery, it dawned on me. My body has started to heal. After 3 surgeries and weeks of wound care and weeks of bloodtests and chemotherapy, my body needs a friend. My body needs an ally. I need to nurture this body. Treat it kindly. It did not deserve cancer, but it definitely deserves a break. That's the day I gave up my anger and hatred. I have taken up the task of advocacy for my tattered body. I feed it the best nutrients. I give it all the rest it needs. I make it flex it's muscles now and then. I switched game plans from the defensive to the offensive. It feels much calmer on this side. I am better able to be my own friend. I am reunited with my body now, we are one and the same. I might even be better than I was before this all started. I am transforming Cancer by stealing his energy (why is Cancer male? Don't know, but he is) and funneling it into my own plan for me, myself and I. Cancer is not my friend, but he has given me impetus to being a more positive person. I win!
Saturday, September 18, 2010
My Buddy Cancer
Cancer is a bully. When you aren't paying attention, he grabs your elbow and pulls you along at breakneck speed. He pulls hard and fast. He pushes you past insurmountable brick walls and you wonder if he is going to push you into those bricks. He drags you to the edge of towering cliffs and you wonder if he is going to whip you over that edge. Your heart is pounding. You are afraid. Cancer is in complete control and you are losing.
Cancer is too strong to beat with one schoolyard fight during recess. This fight will be long and last until the end of your life. You resist. You resist by getting treatments, by taking care of yourself. Your resistance is heavy, heavy enough to be the anchor that keeps you from plummeting over the edge of that cliff. Aannndddd......things slowww dooowwwnn. You can catch your breath. You can speak without shrieking. Cancer is still anchored to your elbow, but he is not winning today. And that is exhilarating.
You will live your life with your buddy, the bully Cancer, by your side. Sometimes he will be the lead of the bullwhip and you will be flung helplessly around. Sometimes you will be the strong one, standing firmly in defiance. Those will be your good days. Hopefully, on the grand scale of life, the balance of your days will weigh positive.
Cancer is too strong to beat with one schoolyard fight during recess. This fight will be long and last until the end of your life. You resist. You resist by getting treatments, by taking care of yourself. Your resistance is heavy, heavy enough to be the anchor that keeps you from plummeting over the edge of that cliff. Aannndddd......things slowww dooowwwnn. You can catch your breath. You can speak without shrieking. Cancer is still anchored to your elbow, but he is not winning today. And that is exhilarating.
You will live your life with your buddy, the bully Cancer, by your side. Sometimes he will be the lead of the bullwhip and you will be flung helplessly around. Sometimes you will be the strong one, standing firmly in defiance. Those will be your good days. Hopefully, on the grand scale of life, the balance of your days will weigh positive.
Sunday, September 5, 2010
The Bald Head
I woke up this morning, fetched the paper, refilled my water glass and then took my shower. As I stepped out of the shower, I caught a glimpse of myself in the mirror. Specifically a glimpse of some bald lady. I was shocked for a split second before I realized that I was looking at my own reflection. Then I remembered, oh yeah, you have a bald head because of your chemo because you have cancer. My bald head is a badge of my disease that I am forced to wear. It has robbed me of my identity and my privacy.
My bald head outs me as a cancer patient. People stare. And they know something intensely personal about me just by looking at me. I attended a charity event that benefited the American Cancer Society. There was a booth selling crazy hats. I thought that was a magnificent idea and wanted to try on some of the hats. I whipped the scarf off my bald head and there it was, the stare. The acknowledgment that I was one of them, one of those unfortunate people with cancer. Maybe I am only uncomfortable with this when I sense pity. Nothing steals strength faster than pity.
My bald head sometimes garners me a little extra kindness. The grocery clerks are more patient. The banker rushes to assist me. Strangers hold the door a moment longer. What is counter-intuitive is that children are not afraid to ask me about my head. I welcome those questions and the dialogues that can follow. These are the interactions that give me strength.
That moment in the mirror this morning startled me. It reminded me that I have cancer. That must be what happens to some people when they first catch sight of the bald head. She has cancer. I remember that initial shock. It is blinding and consuming. I have had time to deal with this fact, I guess I can wait until they catch up. I can accept that fact that they know me as "the lady with cancer". I can accept that fact that they know some of my personal issues without me telling them. I reject the pity. I look forward to accepting kindness, hopefully with grace.
My bald head outs me as a cancer patient. People stare. And they know something intensely personal about me just by looking at me. I attended a charity event that benefited the American Cancer Society. There was a booth selling crazy hats. I thought that was a magnificent idea and wanted to try on some of the hats. I whipped the scarf off my bald head and there it was, the stare. The acknowledgment that I was one of them, one of those unfortunate people with cancer. Maybe I am only uncomfortable with this when I sense pity. Nothing steals strength faster than pity.
My bald head sometimes garners me a little extra kindness. The grocery clerks are more patient. The banker rushes to assist me. Strangers hold the door a moment longer. What is counter-intuitive is that children are not afraid to ask me about my head. I welcome those questions and the dialogues that can follow. These are the interactions that give me strength.
That moment in the mirror this morning startled me. It reminded me that I have cancer. That must be what happens to some people when they first catch sight of the bald head. She has cancer. I remember that initial shock. It is blinding and consuming. I have had time to deal with this fact, I guess I can wait until they catch up. I can accept that fact that they know me as "the lady with cancer". I can accept that fact that they know some of my personal issues without me telling them. I reject the pity. I look forward to accepting kindness, hopefully with grace.
Thursday, July 15, 2010
Now accepting all hat donations!
One of the most common side effects of chemotherapy is hairloss. It's not IF you lose you hair, but WHEN you lose your hair. This is usually about 14 days after your first treatment. I am at day 7. I know that I will be bald in about a week.
Since I first got the news that I had Stage 3 ovarian cancer, I have tried to maintain some amount of normalcy in my life. I have tried to prepare for treatment in order to minimize the impact on my normal life. I read all the information the nurses and volunteers give me. As a matter of fact, I usually read everything twice. I try to make healthy nutrient rich food choices in my diet, giving up many of my favorite things like coffee, beer & junk food. I learned all about my ostomy and the diet restrictions and the products needed to care for Oscar. Yes, I named my ostomy. Sometimes he is quite vocal and grouchy, and he is a slob. He doesn't clean up after himself at all. I learned all about my wound-vac machine and how to change the dressings for my slowly healing incision. I learned how to change the collection container filled with blood, serum and pus. I had a lot to learn, and quickly. I got a super short hair cut to prepare for the inevitable hair loss. I think all these things helped me to maintain my sense of control over what is happening to me. My sense of empowerment was bolstered by all these activities.
Now, about 12 weeks post-surgery, I have settled into the routine of being a cancer patient. My new diet and food choices are more habit now. I prepare most of my food and am looking forward to using the recipes from a new cookbook I bought today, "The Cancer-Fighting Kitchen". I have plenty of time to shop for groceries and cook because my doctor extended my disability leave until the end of the year. I have tamed Oscar. He usually behaves these days. Dr. Lim removed the wound-vac dressings and my incisions are sealed and healing more every day. I can pass for a normal person in public. I don't look sick or encumbered with medical equipment . You might think, "Yay, that sounds so good for my friend. You go girl!". But passing for normal denies my truth.
My truth will be revealed to all by my bald head. My sense of empowerment is wobbly. I need to redefine my sense of self. My dad has volunteered to clip my hair into a super stylish buzzcut. But this will force me into the bright daylight of the reality of having cancer. I am still skirting the shadowy sidelines, not yet wanting to be recognized as a cancer patient by passersby. So I am going to take the leap. I will take up my dad's offer and get a super stylish buzzcut before I wake up to clumps of hair on my pillow. A girl needs empowerment.
Since I first got the news that I had Stage 3 ovarian cancer, I have tried to maintain some amount of normalcy in my life. I have tried to prepare for treatment in order to minimize the impact on my normal life. I read all the information the nurses and volunteers give me. As a matter of fact, I usually read everything twice. I try to make healthy nutrient rich food choices in my diet, giving up many of my favorite things like coffee, beer & junk food. I learned all about my ostomy and the diet restrictions and the products needed to care for Oscar. Yes, I named my ostomy. Sometimes he is quite vocal and grouchy, and he is a slob. He doesn't clean up after himself at all. I learned all about my wound-vac machine and how to change the dressings for my slowly healing incision. I learned how to change the collection container filled with blood, serum and pus. I had a lot to learn, and quickly. I got a super short hair cut to prepare for the inevitable hair loss. I think all these things helped me to maintain my sense of control over what is happening to me. My sense of empowerment was bolstered by all these activities.
Now, about 12 weeks post-surgery, I have settled into the routine of being a cancer patient. My new diet and food choices are more habit now. I prepare most of my food and am looking forward to using the recipes from a new cookbook I bought today, "The Cancer-Fighting Kitchen". I have plenty of time to shop for groceries and cook because my doctor extended my disability leave until the end of the year. I have tamed Oscar. He usually behaves these days. Dr. Lim removed the wound-vac dressings and my incisions are sealed and healing more every day. I can pass for a normal person in public. I don't look sick or encumbered with medical equipment . You might think, "Yay, that sounds so good for my friend. You go girl!". But passing for normal denies my truth.
My truth will be revealed to all by my bald head. My sense of empowerment is wobbly. I need to redefine my sense of self. My dad has volunteered to clip my hair into a super stylish buzzcut. But this will force me into the bright daylight of the reality of having cancer. I am still skirting the shadowy sidelines, not yet wanting to be recognized as a cancer patient by passersby. So I am going to take the leap. I will take up my dad's offer and get a super stylish buzzcut before I wake up to clumps of hair on my pillow. A girl needs empowerment.
Subscribe to:
Posts (Atom)