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.
Showing posts with label ovarian cancer. Show all posts
Showing posts with label ovarian cancer. Show all posts
Monday, September 30, 2013
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
Sunday, June 30, 2013
Done, But Not Yet Finished.....
I am done with treatment.
I am not finished, according to my doctor and the plan, but I am just done. I want to be finished. I am bored with the details of treatment, like labwork. I am done, so I forget my labwork each week. The idle chit chat with the lab tech each week is just boring. I am so tired of smiling each week and making up something interesting to talk about. I can usually come up with a good lunch story, as in "I think I will go to lunch today at _________." Maybe I will go to lunch but probably not. I am too wiped out and will probably go home and sit on the couch with the laptop. Like I said, boring.
I am wiped out because I have had so much chemotherapy. This is my third series of treatment. I started again in February because of my first recurrence of ovarian cancer. I am getting the same drugs I used the first time. This is good because that means I have a response to these drugs, I am platinum-sensitive. This is a good thing for my prognosis. This is a bad thing for my body and the side effects of these drugs, paclitaxel and carboplatin. The taxane drug, the paclitaxel, causes neuropathy, numbness and pain in my fingers and toes. The platinum drug, the carboplatin, messes with my blood chemistry and bone marrow. I have constant electrolyte issues that require buckets of anti-diarrhea medicines and infusions. I have constant blood counts issues, low white blood cells, then low platelets, and always anemia from low red blood cells. This affects the activities I am allowed to participate in. I have to avoid other people (germs), knives (I might cut myself), bikes (I might fall and injure myself), fresh fruit (germs), uncooked food (germs), flossing (bleeding)....and the list goes on. It is no longer interesting to me to even explain this. I hear blah, blah, blah when I talk. The topic never changes.
I am tired of being bald in public. I really like when I can wear a big hat and sunglasses and hide. If I cannot hide, I see the looks at my head. I ignore the looks. I walk the other way. I am tired of answering the questions.
I am done with cancer. I want to be able to tell you about the fun things I am doing. I am not doing fun things. I am housebound with low white blood cells this week. I could go out, if I wear a mask. Great, a bald girl wearing a mask. How fun is that?
I am done with cancer, but cancer is not yet done with me. I will keep my appointments and wait impatiently until this series of treatments is finished. I can't wait.
I am not finished, according to my doctor and the plan, but I am just done. I want to be finished. I am bored with the details of treatment, like labwork. I am done, so I forget my labwork each week. The idle chit chat with the lab tech each week is just boring. I am so tired of smiling each week and making up something interesting to talk about. I can usually come up with a good lunch story, as in "I think I will go to lunch today at _________." Maybe I will go to lunch but probably not. I am too wiped out and will probably go home and sit on the couch with the laptop. Like I said, boring.
I am wiped out because I have had so much chemotherapy. This is my third series of treatment. I started again in February because of my first recurrence of ovarian cancer. I am getting the same drugs I used the first time. This is good because that means I have a response to these drugs, I am platinum-sensitive. This is a good thing for my prognosis. This is a bad thing for my body and the side effects of these drugs, paclitaxel and carboplatin. The taxane drug, the paclitaxel, causes neuropathy, numbness and pain in my fingers and toes. The platinum drug, the carboplatin, messes with my blood chemistry and bone marrow. I have constant electrolyte issues that require buckets of anti-diarrhea medicines and infusions. I have constant blood counts issues, low white blood cells, then low platelets, and always anemia from low red blood cells. This affects the activities I am allowed to participate in. I have to avoid other people (germs), knives (I might cut myself), bikes (I might fall and injure myself), fresh fruit (germs), uncooked food (germs), flossing (bleeding)....and the list goes on. It is no longer interesting to me to even explain this. I hear blah, blah, blah when I talk. The topic never changes.
I am tired of being bald in public. I really like when I can wear a big hat and sunglasses and hide. If I cannot hide, I see the looks at my head. I ignore the looks. I walk the other way. I am tired of answering the questions.
I am done with cancer. I want to be able to tell you about the fun things I am doing. I am not doing fun things. I am housebound with low white blood cells this week. I could go out, if I wear a mask. Great, a bald girl wearing a mask. How fun is that?
I am done with cancer, but cancer is not yet done with me. I will keep my appointments and wait impatiently until this series of treatments is finished. I can't wait.
Thursday, March 14, 2013
Slash-n-Burn
I can't shake the waking remnants of the dream from a few days ago. The sleep was drug fueled and sporadic, hardly restful sleep. I drifted to awareness with a vague dread, a cautious hopefulness that maybe today I would be myself, not the steroid-raging shell of exhausted alertness that stared me down in the mirror. I can't look at that woman in the mirror. Her eyes are spent, yet intense, boring into my own eyes, demanding something, anything other than the status quo.
I woke with the absolute surety that my midsection was a pile of embers, a pile of charred bits of black. A deep pile that would stick to my fingers if I touched my belly. It smelled. I so wanted to touch it and verify that my belly had indeed been incinerated. I did not touch it. It was just a dream, after all.
But it is not just a dream. I yearn to have the landscape of my belly be laid clean. I believe that the way to healing is through treatment. I spend hours visualizing my belly as a pink happy place, with shiny healthy cells. This a step further down the path. I have to push forward through the tangled undergrowth and clean it out. I can visualize the pink healthfulness there, made possible by the passing devastation of chemotherapy.
I woke with the absolute surety that my midsection was a pile of embers, a pile of charred bits of black. A deep pile that would stick to my fingers if I touched my belly. It smelled. I so wanted to touch it and verify that my belly had indeed been incinerated. I did not touch it. It was just a dream, after all.
But it is not just a dream. I yearn to have the landscape of my belly be laid clean. I believe that the way to healing is through treatment. I spend hours visualizing my belly as a pink happy place, with shiny healthy cells. This a step further down the path. I have to push forward through the tangled undergrowth and clean it out. I can visualize the pink healthfulness there, made possible by the passing devastation of chemotherapy.
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.
Sunday, July 15, 2012
Peace
Another friend died today. Or maybe yesterday. I got the news today. (Oh boy.)
I know a fantastic bunch of women that I have never met. We came together because of our common denominator, ovarian cancer. We share our lives with each other in cyber space, in the cloud. We talk about our similarities in diagnosis and treatment and side effects and other cancer stuff. We also talk about our families and travels and hobbies and triumphs. We can discuss harrowing topics that normal people shirk. We can rejoice in the simplest things that normal people take for granted.
Because of the reason for our connection, and maybe because of the intimate nature of our connection, we can never really escape the slow, deep, dark, undercurrent of the reality of our futures. We see it happen to our friends. We know the statistics. We know that less than half of us have a chance to survive for 5 years after diagnosis. We choose to ignore those effing statistics. Who wants to go around knowing that half of your friends will die within 5 years? No one. That's why we ignore those effing statistics. Don't get me wrong, we know the numbers, we just choose to live life in spite of those numbers.
But those numbers catch us anyway. My friend was caught. I cried. Then I cursed. I cried again. I left the house. Searching for I know not. I ended up at the labyrinth garden and paced the path. Then I barged ahead toward my favorite spot at the outlook. I heard boisterous voices ahead. I turned and stomped down the path in the opposite direction. There it was. A spectacular affirmation of life. A falcon in the bare treetop just over my head. She perched on the branch, turned her head to look at me, then turned her whole body with a heavy hop to face me. She turned her head to each side, stretching her neck into the sky. She eyed me for awhile and let me walk closer. She posed for me while I snapped several pics on my phone. Then she spread her wings in a whoompf and took flight over my head. I craned to watch and her wings seemed to span an easy 6 feet. I could see the detail of the little feathers under her wings. She seemed close enough to touch in that weird way your eyes play tricks on you. Wow!!
I inhaled with a gasp and a smile. I was filled with joy. I thanked her, yelling after her as if she would answer me. It was then I knew my friend had peace. And that gave me peace too.
I know a fantastic bunch of women that I have never met. We came together because of our common denominator, ovarian cancer. We share our lives with each other in cyber space, in the cloud. We talk about our similarities in diagnosis and treatment and side effects and other cancer stuff. We also talk about our families and travels and hobbies and triumphs. We can discuss harrowing topics that normal people shirk. We can rejoice in the simplest things that normal people take for granted.
Because of the reason for our connection, and maybe because of the intimate nature of our connection, we can never really escape the slow, deep, dark, undercurrent of the reality of our futures. We see it happen to our friends. We know the statistics. We know that less than half of us have a chance to survive for 5 years after diagnosis. We choose to ignore those effing statistics. Who wants to go around knowing that half of your friends will die within 5 years? No one. That's why we ignore those effing statistics. Don't get me wrong, we know the numbers, we just choose to live life in spite of those numbers.
But those numbers catch us anyway. My friend was caught. I cried. Then I cursed. I cried again. I left the house. Searching for I know not. I ended up at the labyrinth garden and paced the path. Then I barged ahead toward my favorite spot at the outlook. I heard boisterous voices ahead. I turned and stomped down the path in the opposite direction. There it was. A spectacular affirmation of life. A falcon in the bare treetop just over my head. She perched on the branch, turned her head to look at me, then turned her whole body with a heavy hop to face me. She turned her head to each side, stretching her neck into the sky. She eyed me for awhile and let me walk closer. She posed for me while I snapped several pics on my phone. Then she spread her wings in a whoompf and took flight over my head. I craned to watch and her wings seemed to span an easy 6 feet. I could see the detail of the little feathers under her wings. She seemed close enough to touch in that weird way your eyes play tricks on you. Wow!!
I inhaled with a gasp and a smile. I was filled with joy. I thanked her, yelling after her as if she would answer me. It was then I knew my friend had peace. And that gave me peace too.
Wednesday, May 30, 2012
Therapy
Last time I was stuck in the pokey (that's my euphemism for the hospital, the pokey)... as I was saying, last time I was stuck in the pokey for the long haul, they sent the occupational therapist to see me. I had to demonstrate my ability to dress myself by removing my socks, then putting them on again, over and over. They watched me hobble to the sink and brush my teeth. I suppose they would have been interested in watching me brush my hair, except I was bald, so no go on that. I was asked to demonstrate that I could retrieve an object from the floor or a high shelf. Easy enough I guess. They really wanted me to walk, yet they kept me tethered by i.v. lines and a g-tube and drains hanging from my belly. They didn't want me to hobble to the toilet without help, yet they lectured me for not walking enough. They asked if I was depressed. Who wouldn't be?
When I was a student, I worked and volunteered at the Good Samaritan Retirement Village. Some days, I helped with the arts and crafts. I thought arts and crafts was silly. How could paste and scissors and markers help someone in a wheelchair? After my stay(s) in the pokey, I understand. It's not about the result. It's about the process. It's about the act of creation, the focus of attention, the healing that occurs when you participate in something, anything. That occupational therapist who wanted me to improve could have helped me by bringing me some paste and scissors and markers.
Now that I'm home, I find myself drawn to arts and crafts. I get lost in the process of creating something, anything. I call it the Zen of Chopping. I cook not really to feed myself, but to prepare health for myself. I take my time preparing the ingredients. I find the beauty in a nicely sliced onion. A perfectly cooked egg.
But, it's not about the egg. While I enjoy eating a perfectly cooked egg, I benefit more from the process of creating it. By sinking my attention into the maybe mundane task of stirring, I am giving my mind focus. Focus that distracts me from the details of what has happened, from cancer. An ovarian cancer sister once compared cancer to a radio you can't turn off. That radio is poorly tuned, never clear, but always emanating sound. Some days the volume is loud and demanding, other days are a low hum, but that radio is always on. The task of preparing a perfectly cooked scrambled egg turns down that volume, dampens the static of that radio. "coming at ya from station OVCA.."
As a side effect of my search for Zen, I make almost everything from scratch. I relish the hunt for ingredients. I read cookbooks. I watch all the cooking contest shows. It's both a quest for health and a remedy for that radio. Last night, I wanted cake. I made my favorite recipe from scratch and served myself on my grandmother's plate. I was satisfied and that radio was a faint buzz in the background. That therapist would very happy to see me cooking. Who cares about my socks? I hardly even wear socks.
When I was a student, I worked and volunteered at the Good Samaritan Retirement Village. Some days, I helped with the arts and crafts. I thought arts and crafts was silly. How could paste and scissors and markers help someone in a wheelchair? After my stay(s) in the pokey, I understand. It's not about the result. It's about the process. It's about the act of creation, the focus of attention, the healing that occurs when you participate in something, anything. That occupational therapist who wanted me to improve could have helped me by bringing me some paste and scissors and markers.
Now that I'm home, I find myself drawn to arts and crafts. I get lost in the process of creating something, anything. I call it the Zen of Chopping. I cook not really to feed myself, but to prepare health for myself. I take my time preparing the ingredients. I find the beauty in a nicely sliced onion. A perfectly cooked egg.
But, it's not about the egg. While I enjoy eating a perfectly cooked egg, I benefit more from the process of creating it. By sinking my attention into the maybe mundane task of stirring, I am giving my mind focus. Focus that distracts me from the details of what has happened, from cancer. An ovarian cancer sister once compared cancer to a radio you can't turn off. That radio is poorly tuned, never clear, but always emanating sound. Some days the volume is loud and demanding, other days are a low hum, but that radio is always on. The task of preparing a perfectly cooked scrambled egg turns down that volume, dampens the static of that radio. "coming at ya from station OVCA.."
As a side effect of my search for Zen, I make almost everything from scratch. I relish the hunt for ingredients. I read cookbooks. I watch all the cooking contest shows. It's both a quest for health and a remedy for that radio. Last night, I wanted cake. I made my favorite recipe from scratch and served myself on my grandmother's plate. I was satisfied and that radio was a faint buzz in the background. That therapist would very happy to see me cooking. Who cares about my socks? I hardly even wear socks.
Thursday, May 17, 2012
Roadmap
I especially like to study that map later and see where I have been. I can see how big the Great Salt Lake really is. How tiny Great Britain really is. How close Vermont is to Montreal. I like to study history by tracing events on a map. See how far those pioneers walked when they settled the American West? On foot? I'm not sure I would have done that. See that tiny chunk of land that everybody claims is theirs? It's very small. No wonder they fight. Looking at a map helps me understand people, helps me understand the past, puts it all in perspective for me.
***************************GRAPHIC ALERT***********************************
******************************REALLY!!!!!************************************
********************CLICK OUT IF YOU ARE SQUEAMISH************************
***********************It's not that bad, but really, you were warned********************
At my appointment with my oncologist,every 3 months, they palpate my belly feeling for new growth. This time, when I bared my belly, I heard a gasp. "Wow, we really did a number on you." Yep. You can tell what happened to me by looking at my belly, by looking at the map of scars. It's not only a record of my past two years of living, but also a record of my challenges and indirectly a record of my triumphs. Let's take a look...
P.S. No wisecracks about the muffin!
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.
Friday, October 14, 2011
The Magic Number
I recently watched a cancer movie on Lifetime or Oprah Network or one of those saccharine sissy channels. I was not going to watch this movie in the beginning. I did not want to watch this stupid movie about cancer, directed and acted by women who probably don't have cancer. I did not want to watch another maudlin funeral scene of guests mourning their loss, ignoring that the cancer patient has the biggest loss of all of them. I did not want to watch a rerun of my own life. I did not feel strong enough. I go to support and therapy twice a week, every week, to learn how to be myself again. I have made some hard won progress these past 4 months. Watching a stupid cancer movie could send me sobbingly back into the dark cave from which I had fought so hard to emerge. But I was feeling strong that day. I watched that stupid movie anyway.
I am so glad that I watched that stupid cancer movie called "Five". It's five different vignettes about five different women who are diagnosed with cancer, hence the title. Speaking from the viewpoint of the afflicted, I found these five women's stories strangely uplifting. It wasn't that they all survive, because they don't. It's that their stories offer me something that is not always readily apparent in my life. Their stories offer Hope. The directors did not forget that part of their audience was bound to be actual cancer patients. The stories were authentic. I was moved.
I am going to share a little acknowledged fact of life for cancer patients. Many of us stop counting birthdays and start counting anniversaries. We count the years of survival after diagnosis. The magic number is five. The significance of five years is reckoned by the science of fighting cancer. Many studies measure success of treatments by looking at the "five-year-survival rate", the percentage of women still alive five years after diagnosis. Ovarian cancer (my cancer) has a five-year-survival rate of about 30%. That means 70% of ovarian cancer patients die within five years after diagnosis. That is 7 out of 10. That statistic weighs heavy in my head. Many studies do not follow patients after those five years, nor do those studies take into account the quality of life during those five years. It can be a false benchmark. On the other hand, if you can attain remission and maintain that status for five years, the medical community will unofficially consider you cured! They should be measuring Progression Free Survival (PFS). If five years of PFS can mean that I am "cured", come on, five!! Five! Five!! Five!!!
I am not sure how old I am, but I can tell you that I have survived 18 months since my diagnosis. I am counting in much the same manner that small children count their birthdays. I am 1&1/2 years out. I am also counting my PFS. My tumor markers dropped into the normal range 5 months after diagnosis, but my oncologist maintained chemotherapy for 8 more months. My oncology team then declared me "disease free". I have maintained PFS for 5 months, almost 6 months now. I have made no concrete plans with my life yet. I tell people to ask me in five years. I will address any remaining critical issues at that point. After five years.
The women who made "Five" somehow touched on all this. I am not sure if they knew at the time or if it was a serendipitous accident. The women in the movie have a ritual for that five year anniversary. They all get to "kiss the wall" in a ceremony and leave their lip prints on display. Four of the five women survive. 4/5 is a believable survival rate. The magic of the moment of marking your survival is powerful. It reinforces hope. Hope against odds and statistics. Hope against common sense and reality. My oncologist reminds me that there is no reason why I can't be in the survival group, but we have to wait five years to see if it works out that way. Someone has to survive, it might as well be me. In the meantime I am still counting. I will let you know in 4&1/2 years.
I am so glad that I watched that stupid cancer movie called "Five". It's five different vignettes about five different women who are diagnosed with cancer, hence the title. Speaking from the viewpoint of the afflicted, I found these five women's stories strangely uplifting. It wasn't that they all survive, because they don't. It's that their stories offer me something that is not always readily apparent in my life. Their stories offer Hope. The directors did not forget that part of their audience was bound to be actual cancer patients. The stories were authentic. I was moved.
I am going to share a little acknowledged fact of life for cancer patients. Many of us stop counting birthdays and start counting anniversaries. We count the years of survival after diagnosis. The magic number is five. The significance of five years is reckoned by the science of fighting cancer. Many studies measure success of treatments by looking at the "five-year-survival rate", the percentage of women still alive five years after diagnosis. Ovarian cancer (my cancer) has a five-year-survival rate of about 30%. That means 70% of ovarian cancer patients die within five years after diagnosis. That is 7 out of 10. That statistic weighs heavy in my head. Many studies do not follow patients after those five years, nor do those studies take into account the quality of life during those five years. It can be a false benchmark. On the other hand, if you can attain remission and maintain that status for five years, the medical community will unofficially consider you cured! They should be measuring Progression Free Survival (PFS). If five years of PFS can mean that I am "cured", come on, five!! Five! Five!! Five!!!
I am not sure how old I am, but I can tell you that I have survived 18 months since my diagnosis. I am counting in much the same manner that small children count their birthdays. I am 1&1/2 years out. I am also counting my PFS. My tumor markers dropped into the normal range 5 months after diagnosis, but my oncologist maintained chemotherapy for 8 more months. My oncology team then declared me "disease free". I have maintained PFS for 5 months, almost 6 months now. I have made no concrete plans with my life yet. I tell people to ask me in five years. I will address any remaining critical issues at that point. After five years.
The women who made "Five" somehow touched on all this. I am not sure if they knew at the time or if it was a serendipitous accident. The women in the movie have a ritual for that five year anniversary. They all get to "kiss the wall" in a ceremony and leave their lip prints on display. Four of the five women survive. 4/5 is a believable survival rate. The magic of the moment of marking your survival is powerful. It reinforces hope. Hope against odds and statistics. Hope against common sense and reality. My oncologist reminds me that there is no reason why I can't be in the survival group, but we have to wait five years to see if it works out that way. Someone has to survive, it might as well be me. In the meantime I am still counting. I will let you know in 4&1/2 years.
Sunday, October 9, 2011
The Aftermath of Chemotherapy
Nobody said that going through chemo would be easy. I approached my treatment as a battle plan. I would have an infusion of carboplatin and paclitaxel every 21 days. I would have blood drawn every Monday to track my white blood cells (WBC), platelets and other blood chemistry. I would meet with my oncologist every 21 days, the day before my next infusion, to evaluate my progress. In the meantime, I would be hypervigilant against germs because my chemo drugs suppressed my immunity. I would be extra careful in preparing my own food. I would avoid any uncooked food. I would avoid large crowds and sick people. I would not floss (floss can cut your gums and introduce bacteria). I would not get any manicures or pedicures for 6 months (the tools used can abrade your skin and introduce bacteria). I would always flush twice (the toxic chemo drugs are eliminated through the kidneys). I would wash my hands more frequently. I ultimately became a germ ninja. This gave me great focus. This also served to distract me from the real issue, I had ovarian cancer.
I attacked my cancer by faithfully following the battle plan. I would have the 6 months of treatment with carboplatin and paclitaxel. I would then have another surgery to reverse my ileostomy, implant an intraperitoneal port (a catheter to allow infusion of chemo directly into my abdomen) and to allow my oncologist a "second-look" into my abdominal cavity. He would look for any signs of tumor growth and take biopsies. After they found "microscopic evidence of disease", I would be scheduled for another 6 months of chemo, this time with cisplatin (a more potent platinum based drug) and paclitaxel. I would have an IV infusion of paclitaxel every 21 days, an overnight IP infusion of cisplatin every 21 days and an overnight IP infusion of paclitaxel every 21 days. I would still get blood drawn every Monday and meet with my oncologist every 21 days. I would occasionally need to have an infusion of electrolytes or whole blood. I would deal with the side effects as needed. I would take medication to prevent the nausea and vomiting. I would massage my numb hands and feet. I would rest on those days when I was too fatigued to do anything else. And of course I would continue my campaign against germs. All this tactical warfare propelled me through the next year.
One day at my oncologist's office, 14 months after my diagnosis, he told me that there was "no evidence of cancer." The battle plan had worked! I am victorious! I am invincible! The cancer is gone! He says that he doesn't need to see me for 3 months! No weekly blood draws or anything! Wahoo! I should wait a few months before any manicures, tattoos, acupuncture, vaccinations or dental work because I am still immuno-compromised, but otherwise, I am free to go.
Wait a minute. Free to go and do what? For 14 months, my life has revolved around my treatment. I have forgotten how to do anything else. I still see the specter of cancer waiting at the end of the driveway. I still have neuropathy in my feet and hands. I have developed a balance issue and need to use a walker. My bowels still argue with me occassionally. I am still dropping weight even though I eat like a pig. I still need electrolyte infusions, even 4 months post treatment. I am still pissed off that all this crap happened to me. What am I supposed to do now?
I am supposed to find a way to clean up this mess from all the ravages of chemo. Not only the physical challenges, but also the taxations on the spirit. This is harder than dealing with the actual cancer. Cancer cells in my body are tangible and treatable. Cancer thoughts in my head have tenacity. I look for distractions. I am learning to crochet. I am sewing. I am cooking. I am taking photos. I go to support group. I go to therapy, both physical and psychological. I need more distractions. I need a battle plan. I am floundering in the aftermath of treatment. I still google all the latest research on ovarian cancer. I am obsessing that my balance issue is a tumor metastasis to my brain. I cannot escape from the stranglehold of cancer. There may be "no evidence of disease", but it's not gone. It's never gone. The fight is not over. It will never be over.
I attacked my cancer by faithfully following the battle plan. I would have the 6 months of treatment with carboplatin and paclitaxel. I would then have another surgery to reverse my ileostomy, implant an intraperitoneal port (a catheter to allow infusion of chemo directly into my abdomen) and to allow my oncologist a "second-look" into my abdominal cavity. He would look for any signs of tumor growth and take biopsies. After they found "microscopic evidence of disease", I would be scheduled for another 6 months of chemo, this time with cisplatin (a more potent platinum based drug) and paclitaxel. I would have an IV infusion of paclitaxel every 21 days, an overnight IP infusion of cisplatin every 21 days and an overnight IP infusion of paclitaxel every 21 days. I would still get blood drawn every Monday and meet with my oncologist every 21 days. I would occasionally need to have an infusion of electrolytes or whole blood. I would deal with the side effects as needed. I would take medication to prevent the nausea and vomiting. I would massage my numb hands and feet. I would rest on those days when I was too fatigued to do anything else. And of course I would continue my campaign against germs. All this tactical warfare propelled me through the next year.
One day at my oncologist's office, 14 months after my diagnosis, he told me that there was "no evidence of cancer." The battle plan had worked! I am victorious! I am invincible! The cancer is gone! He says that he doesn't need to see me for 3 months! No weekly blood draws or anything! Wahoo! I should wait a few months before any manicures, tattoos, acupuncture, vaccinations or dental work because I am still immuno-compromised, but otherwise, I am free to go.
Wait a minute. Free to go and do what? For 14 months, my life has revolved around my treatment. I have forgotten how to do anything else. I still see the specter of cancer waiting at the end of the driveway. I still have neuropathy in my feet and hands. I have developed a balance issue and need to use a walker. My bowels still argue with me occassionally. I am still dropping weight even though I eat like a pig. I still need electrolyte infusions, even 4 months post treatment. I am still pissed off that all this crap happened to me. What am I supposed to do now?
I am supposed to find a way to clean up this mess from all the ravages of chemo. Not only the physical challenges, but also the taxations on the spirit. This is harder than dealing with the actual cancer. Cancer cells in my body are tangible and treatable. Cancer thoughts in my head have tenacity. I look for distractions. I am learning to crochet. I am sewing. I am cooking. I am taking photos. I go to support group. I go to therapy, both physical and psychological. I need more distractions. I need a battle plan. I am floundering in the aftermath of treatment. I still google all the latest research on ovarian cancer. I am obsessing that my balance issue is a tumor metastasis to my brain. I cannot escape from the stranglehold of cancer. There may be "no evidence of disease", but it's not gone. It's never gone. The fight is not over. It will never be over.
Wednesday, August 24, 2011
Perspective
I am on the road to recovery and wellness. I plod ahead, faithfully taking small steps forward. I cannot really make out what lies ahead of me. It's unknown territory. Sometimes it seems that everything will work out alright. Sometimes it seems that I will be broken forever. I strain to see a positive future. The alternative is too scary. While my visions of the future are murky and unclear, my memories of the past are tangible and real. I can crystallize my perspective simply by turning and looking behind me.
16 months ago, I was reeling from the devastating blow of being diagnosed with ovarian cancer. I was panicked about death and my final preparations for that event. Today I am at peace with death. Death does not scare me. The final deteroriation of my body before death is what scares me. I will not be able to escape that final loss of control. I hope to maintain my dignity during the surrender. The release will be sweet. Surrender has brought me peace.
1 year ago, I was starting chemotherapy. I had just lost all my hair except my eyebrows and eyelashes. I was bald for over a year. My hair and lack of said hair is an instantly recognizable sign of being a cancer patient. I look forward to the day when I am no longer so visible. My hair has started to grow back and is about an inch long now. My hair will bring me normalcy.
4 months ago, I was laying in a hospital bed with a perforated bowel. I had just finished 11 months of chemotherapy. My immunity was non-existant and I was septic. My whole body was infected by the bacteria that had escaped from the holes in my bowel. My oncologist has subsequently told me that he placed my survival at 20%. I survived. My cancer cannot be found. My oncologist was so happy to see me walking into his office for my post-surgery check-up. He shared my story with his student. The whole team came into the office to see me and everyone was happy and smiling and hugging. Their joy brought my success story into focus. I finally understood that I had overcome huge hurdles on my road to recovery. While I fought the little daily battles with nausea, diarrhea, vomiting or fatigue, I had lost sight of the big victories. My cancer team brought me perspective.
2 months ago, I could not walk anywhere without my walker. I barely had the energy to get myself to the bathroom. I relied on my mother to bring me a glass of water. I was pathetic. Today I can walk through the house on my own. Granted that my gait is unsteady and I still tip over sometimes, but I am walking! I have been out to dinner and to the art museum lately. Yes, I still have to use the walker in public. I have noticed many other people who have challenges greater than mine. I have noticed the men in wheelchairs in the park, the woman at physical therapy who cannot stand, the man at the psychologist's office who has to drag his right leg behind him. Those people have taught me to not be such a whiner. That f*&ing walker has brought me humility.
1 hour ago, I could not clarify my own thoughts. I knew I wanted to write about progress, about being able to judge progress not by looking ahead to a distant goal, but by looking back at how far you have come since you started the journey. Now, I have sifted through my scrambled thoughts. By writing this blogpost, I have gained insight into my unsettled mind. This brings me contentment and peace.
16 months ago, I was reeling from the devastating blow of being diagnosed with ovarian cancer. I was panicked about death and my final preparations for that event. Today I am at peace with death. Death does not scare me. The final deteroriation of my body before death is what scares me. I will not be able to escape that final loss of control. I hope to maintain my dignity during the surrender. The release will be sweet. Surrender has brought me peace.
1 year ago, I was starting chemotherapy. I had just lost all my hair except my eyebrows and eyelashes. I was bald for over a year. My hair and lack of said hair is an instantly recognizable sign of being a cancer patient. I look forward to the day when I am no longer so visible. My hair has started to grow back and is about an inch long now. My hair will bring me normalcy.
4 months ago, I was laying in a hospital bed with a perforated bowel. I had just finished 11 months of chemotherapy. My immunity was non-existant and I was septic. My whole body was infected by the bacteria that had escaped from the holes in my bowel. My oncologist has subsequently told me that he placed my survival at 20%. I survived. My cancer cannot be found. My oncologist was so happy to see me walking into his office for my post-surgery check-up. He shared my story with his student. The whole team came into the office to see me and everyone was happy and smiling and hugging. Their joy brought my success story into focus. I finally understood that I had overcome huge hurdles on my road to recovery. While I fought the little daily battles with nausea, diarrhea, vomiting or fatigue, I had lost sight of the big victories. My cancer team brought me perspective.
2 months ago, I could not walk anywhere without my walker. I barely had the energy to get myself to the bathroom. I relied on my mother to bring me a glass of water. I was pathetic. Today I can walk through the house on my own. Granted that my gait is unsteady and I still tip over sometimes, but I am walking! I have been out to dinner and to the art museum lately. Yes, I still have to use the walker in public. I have noticed many other people who have challenges greater than mine. I have noticed the men in wheelchairs in the park, the woman at physical therapy who cannot stand, the man at the psychologist's office who has to drag his right leg behind him. Those people have taught me to not be such a whiner. That f*&ing walker has brought me humility.
1 hour ago, I could not clarify my own thoughts. I knew I wanted to write about progress, about being able to judge progress not by looking ahead to a distant goal, but by looking back at how far you have come since you started the journey. Now, I have sifted through my scrambled thoughts. By writing this blogpost, I have gained insight into my unsettled mind. This brings me contentment and peace.
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.
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!
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