I wonder if this will make the medical literature?
Friday, November 25, 2011
Fish Farts
Both of my chemo regimens involved the platinum drugs, like carboplatin and cisplatin. One of the many side effects of this class of toxic drugs can be ringing in the ear, or tinnitis. I have developed this weird tinnitis, like a clicking sound. When I reported this to my oncologist, he smiled slightly, shook his head and said "I don't know about that". I have struggled to describe this sound. Today I found a video that has the exact sound. My tinnitis sounds like fish farts. Seriously, I hear fish farts.
Sunday, November 20, 2011
Return to Wholeness
My recovery from cancer treatment is complex. I struggle daily with medical issues from lingering side effects of chemotherapy. I take massive amounts of basic electrolytes to maintain normal blood levels. I shuffle around on numb feet. I regularly attend a cancer support group to learn from others and maybe to help others. I see a psychologist to help myself integrate what has happened to me with what I will become. I go to physical therapy to rebuild my wrecked body. I rely on interaction with friends and family to help me return to society. I don't work yet, hell, I can't really walk yet. I do all of these things in faith that I am recovering, a little bit every day.
But I am feeling schizoid. I have divided my online transmissions into sectors. I blog about books on LiveJournal. I update my medical progress on Pharmgirll Wire. I tweet. I blog here about my state of mind. I post on Flickr. I post crafty things in Creation Corner. I post food in Kathy's Kitchen. (I like alliteration.) I journal on Inspire. Mostly, I update on Facebook. I started all these different areas as a means to avoid boring you. I realize now that I have been presenting only one facet of myself on each site. A fractured facet, if you will.
Recovery is about returning to wholeness. Trauma fractures you. (what..too soon?) I am striving to find wholeness in my life. I am ultimately looking for purpose and reason, but I will settle for being whole, not only physically, but also emotionally and spiritually. Not that I know how to do that, yet. I am going to propel myself a few steps down that path by consolidating my profiles. My day to day life will leak onto these pages. Now that I am thinking about it, that is exactly how recovery can work. Each day can bring a little bit of normalcy, a little less about cancer and a little bit more about cooking and crochet. That sounds nice.
But I am feeling schizoid. I have divided my online transmissions into sectors. I blog about books on LiveJournal. I update my medical progress on Pharmgirll Wire. I tweet. I blog here about my state of mind. I post on Flickr. I post crafty things in Creation Corner. I post food in Kathy's Kitchen. (I like alliteration.) I journal on Inspire. Mostly, I update on Facebook. I started all these different areas as a means to avoid boring you. I realize now that I have been presenting only one facet of myself on each site. A fractured facet, if you will.
Recovery is about returning to wholeness. Trauma fractures you. (what..too soon?) I am striving to find wholeness in my life. I am ultimately looking for purpose and reason, but I will settle for being whole, not only physically, but also emotionally and spiritually. Not that I know how to do that, yet. I am going to propel myself a few steps down that path by consolidating my profiles. My day to day life will leak onto these pages. Now that I am thinking about it, that is exactly how recovery can work. Each day can bring a little bit of normalcy, a little less about cancer and a little bit more about cooking and crochet. That sounds nice.
Sunday, November 13, 2011
The C-Train
I read a blogpost today in which the writer described having cancer as taking a train. The train moves forward whether you are ready or not. You might want to stop and get off, but you cannot. If you have a moment to look out the window, you will see the world whizzing past you. Most likely you will only notice this when the train stops for a moment, affording you a break. The car is always full. People get off and new people get on, so the car is always full.
I love the analogy of the train ride. I imagine the "C-train". I see a car full of people, some standing and holding those overhead straps. The buzz of conversation is loud. Then the train lurches and everyone falls silent for a moment, remembering that we are all riding the C-train and it's moving forward...again. We look around and catch each other's eyes for just a moment, just long enough to recognize the solemnity and the fear of the moment. Then we all resume, the buzz of conversation building again. We might have been interrupted, but we will continue.
I love the analogy of the train ride. I imagine the "C-train". I see a car full of people, some standing and holding those overhead straps. The buzz of conversation is loud. Then the train lurches and everyone falls silent for a moment, remembering that we are all riding the C-train and it's moving forward...again. We look around and catch each other's eyes for just a moment, just long enough to recognize the solemnity and the fear of the moment. Then we all resume, the buzz of conversation building again. We might have been interrupted, but we will continue.
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.
Wednesday, August 3, 2011
That dang "positive outlook"
I know I haven't posted anything in quite awhile. I have always tried to compose posts that have a message, a positive spin in the end. I have nothing positive to say right now and that has kept me from sharing. I now realize that holding back gives an inauthentic expression. If I really want to share my experience, I need to share the good and the bad.
I am struggling with keeping that positive outlook alive. My chemo is finished, but my recovery is slower that I would like. I am so frustrated and bored with my situation. I am stuck with a walker and sometimes don't think I will ever regain my strength and balance. I am afraid to admit to this defeatist stream of consciousness. Everyone knows that you need a positive outlook to survive cancer. Am I allowing bad juju when I think less than positive thoughts? What am I doing to my body when I get discouraged? All I want is to feel better. All I want is to be able to eat a meal without suffering bowel trouble. All I want is to be able to walk to the mailbox. All I want is to be normal. Is that so much to ask for?
I am trying to hear and feel the negative, recognize it and release it, be rid of it. I am trying to find a moment of fun and frivolity every day. I am trying to laugh again. It's a constant struggle, this positive outlook stuff. I am working on it.
I am struggling with keeping that positive outlook alive. My chemo is finished, but my recovery is slower that I would like. I am so frustrated and bored with my situation. I am stuck with a walker and sometimes don't think I will ever regain my strength and balance. I am afraid to admit to this defeatist stream of consciousness. Everyone knows that you need a positive outlook to survive cancer. Am I allowing bad juju when I think less than positive thoughts? What am I doing to my body when I get discouraged? All I want is to feel better. All I want is to be able to eat a meal without suffering bowel trouble. All I want is to be able to walk to the mailbox. All I want is to be normal. Is that so much to ask for?
I am trying to hear and feel the negative, recognize it and release it, be rid of it. I am trying to find a moment of fun and frivolity every day. I am trying to laugh again. It's a constant struggle, this positive outlook stuff. I am working on it.
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