Having cancer is described as a journey. Cancer patients talk to each other in these terms. "Where are you in your journey?" The term journey encompasses everything, including but not limited to your physical ordeals, your emotional status, your spirital well-being, your financial troubles, your body, mind and spirit. Cancer patients have a memorized spiel that can sum up their place in their journey. "I was diagnosed with stage 3 ovarian cancer and had cyto-reductive surgery in April 2010. I had a hysterectomy, omentumectomy, bilateral oophorectomy, appendectomy and was left with an ileostomy. I had 6 rounds of chemo from July to October 2010, IV taxol and carboplatin. I then had a second-look surgery where my ileostomy was reversed and micropresence of disease was found on biopsy. I am now in chemo for 6 months, from January to July 2011, IV taxol, IP cisplatin and IP taxol. I feel okay, all things considered." Depending on what questions are asked, that's my spiel. It locates me, tells other cancer peeps where I have been. I want to hear their travel stories so I can figure out where I am going. What to avoid, what to be sure to do, what to expect. I need their travel tips.
I've been lucky enough to have traveled a little bit around this globe in my lifetime. I can tell you that there is always a point in a trip where I look forward to returning home. I want to eat my favorite food, or I miss my favorite socks, or I want to speak English. This doesn't detract from the trip, but rather enriches the trip as I stretch my boundaries while I learn to appreciate all the differences in this grand old world. I've come home a better person each time. One of my favorite memories is returning home through customs in Washington D.C. dragging my favorite hardsided vault of a suitcase behind me. The customs agent looked at my passport, smiled warmly and said softly "Welcome Home". That moment is imprinted on my experience. I was HOME. I could eat McDonald's french fries, watch Jeopardy in English, dig out my favorite clothes from the closet. Home.
Us cancer peeps, on all our unique cancer journies, long for that moment when we get to be Home. But we don't get that. We don't get to be Home ever again. We are on a long arduous journey for the rest of our lives. We have to learn a new language and get up speed fast. Those favorite socks don't feel the same to numb feet. My favorite food is just plain gross today. Today I am longing for the past, for the person I used to be, for the place I used to inhabit. Today I want to go home.
Sunday, January 30, 2011
Thursday, January 27, 2011
Security?
I’m still navigating the obstacles that my relatively recent cancer diagnosis thrust up in front of me. I am learning that while my disease may have stolen who I WAS, it is forcing me to figure out who I will BECOME. I am still in chemo and feel oddly secure here. As long as I am actively fighting and treating and under the close eye of my medical team, I feel safe and cozy. I am incubating. My oncologist mentioned that I might be able to go to 3 month checkups soon and I panicked. What will I do all on my own?!?!?
I hear that this is a common reaction. I will have to find a way to resume the responsibility for my own health and safety. I maintain a certain amount of control over my treatment these days. I nourish myself, exercise my body, placate my troubled mind, feed my spirit. I work this stuff around the framework of my weekly appointments. How will I function with the framework missing? If I don't have an appointment, what will get me off the couch? How do I introduce my new self to the world again? I am grateful that I have the time to mull these things over. I am sure that I will learn to navigate this obstacle as well as all the other unforeseen things in my path. I'll just roll with it.
I hear that this is a common reaction. I will have to find a way to resume the responsibility for my own health and safety. I maintain a certain amount of control over my treatment these days. I nourish myself, exercise my body, placate my troubled mind, feed my spirit. I work this stuff around the framework of my weekly appointments. How will I function with the framework missing? If I don't have an appointment, what will get me off the couch? How do I introduce my new self to the world again? I am grateful that I have the time to mull these things over. I am sure that I will learn to navigate this obstacle as well as all the other unforeseen things in my path. I'll just roll with it.
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.
Sunday, January 9, 2011
For the want of a cure
What a powerful word, "cured". What it must be like to say, "I am cured". Pretty heady stuff. I met a woman today who truly is cured of ovarian cancer. Her cancer was caught early before it had spread. She had it removed and was cured. No chemo, no radiation, just cured. I want to be that, cured. I want to be able to say those words. "I am cured." I want to say those words so badly. I want to say those words more than I ever wanted anything. More than I ever wanted anything in my whole life. So badly that when I feel the fear that I may never say those words, I break down.
Why are some cured and not others? Early detection and treatment makes a huge difference in survival. Why are some cases detected early? Awareness of signs and symptoms. Both you AND your healthcare provider need to be aware of the signs and symptoms. Bear with me as I repeat the signs and symptoms again.
* Bloating
* Pelvic or abdominal pain
* Difficulty eating or feeling full quickly
* Urinary urgency or frequency.
*See your gynecologist if you have these symptoms almost daily for more than 1-2 weeks.
I look back and can see all my missed signs. I can hear my physician telling me about premature menopause. We both just shrugged. Why did I just shrug? Why didn't I know that those things I was experiencing were symptoms of ovarian cancer? I'm a frigging healthcare provider myself! (Hmm...I think I might be experiencing some anger today.) All this talk opens up the question of "what if"? For me, thinking about what might have been is fruitless. I need to look forward. I can only go forward with my treatments. I can only hope that someone reads about the symptoms and gets early treatment so that she can say "I am cured". I can mouth the words and set them free in the breeze, where she can catch them and give voice to them. I told you it was a powerful word, that word, "cured".
Why are some cured and not others? Early detection and treatment makes a huge difference in survival. Why are some cases detected early? Awareness of signs and symptoms. Both you AND your healthcare provider need to be aware of the signs and symptoms. Bear with me as I repeat the signs and symptoms again.
* Bloating
* Pelvic or abdominal pain
* Difficulty eating or feeling full quickly
* Urinary urgency or frequency.
*See your gynecologist if you have these symptoms almost daily for more than 1-2 weeks.
I look back and can see all my missed signs. I can hear my physician telling me about premature menopause. We both just shrugged. Why did I just shrug? Why didn't I know that those things I was experiencing were symptoms of ovarian cancer? I'm a frigging healthcare provider myself! (Hmm...I think I might be experiencing some anger today.) All this talk opens up the question of "what if"? For me, thinking about what might have been is fruitless. I need to look forward. I can only go forward with my treatments. I can only hope that someone reads about the symptoms and gets early treatment so that she can say "I am cured". I can mouth the words and set them free in the breeze, where she can catch them and give voice to them. I told you it was a powerful word, that word, "cured".
Friday, January 7, 2011
It's Always Something by Gilda Radner
I failed to meet my goal of 50 books last year. I am starting anew in 2011. And I'm off and reading.....
This book is about Gilda's struggle with ovarian cancer. It's a subject close to me, ovarian cancer. I should stop reading other cancer patient's stories, but I can't seem to stop myself. I was starting to get discouraged reading Gilda's account of what was happening to her. Sometimes it seems like the treatments have not progressed in the last 20 years. Each treatment, surgery, test, or side effect that Gilda had, I have had. I was thinking to myself, "Good God, they couldn't cure this disease 20 years ago with the same stuff and they can't cure it now". Then finally, near the end, my spirits were lifted. Gilda talks about learning to live a full productive life with all the ambiguity that cancer brings to your life. I speak with Gilda now, when I say that the key is to live each day the best way you know how that day. It seems like a simple enough task, but I know how hard it is to remember to live your life. My favorite line is from the next to last page where Gilda writes that some poems don't rhyme. My own poem doesn't rhyme. I'm still learning my poem, day by day.
This book is about Gilda's struggle with ovarian cancer. It's a subject close to me, ovarian cancer. I should stop reading other cancer patient's stories, but I can't seem to stop myself. I was starting to get discouraged reading Gilda's account of what was happening to her. Sometimes it seems like the treatments have not progressed in the last 20 years. Each treatment, surgery, test, or side effect that Gilda had, I have had. I was thinking to myself, "Good God, they couldn't cure this disease 20 years ago with the same stuff and they can't cure it now". Then finally, near the end, my spirits were lifted. Gilda talks about learning to live a full productive life with all the ambiguity that cancer brings to your life. I speak with Gilda now, when I say that the key is to live each day the best way you know how that day. It seems like a simple enough task, but I know how hard it is to remember to live your life. My favorite line is from the next to last page where Gilda writes that some poems don't rhyme. My own poem doesn't rhyme. I'm still learning my poem, day by day.
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