It has been a while but I wanted to share that I'm honored to be the guest blogger today on The Fat Cyclist's Blog
The Fat Cyclist asked for readers to submit essays about "Your Proudest Moment on the Bike." The blogger, "The FatCyclist", lost his first wife to breast cancer a few years ago and he blogs about biking and fighting cancer. And he actually knows Lance Armstrong...which I can only dream about. Ken and I often laugh at loud at Fatty's humor.
My entry was selected. Here is the link to my blog entry for Fatty, "My First Century", about my breast cancer journey, the road to recovery and my biking. Looking forward...
Tuesday, March 15, 2011
Monday, July 12, 2010
Rainy Night in Chicago.
Night is falling. Black rain clouds are close outside my windows. The thunderstorms and lightning are dancing along the lake. This morning was beautiful as we rode our bikes. I have worked up from riding my bike 40 miles the first two weeks I was back on the bike to between 80-90 miles each of the last two weeks. This morning we rode up the Chicago lakefront north almost 20 miles and then back. Just about three hours with pit stops. I am tired and my legs are sore (in a good way).
I still have local pain and discomfort from my chest surgeries. And doctors visits every few weeks or month but it is manageable. The nerve damage may last up to two years. I have decided there is no sense dwelling on it.
C, a survivor friend, summed up better than I could my current thoughts about my cancer, "I may get cancer again. I can't help that. But I'll know that I did everything I could to prevent it." That is my current strategy.
I have been reading a book she suggested, a book called AntiCancer, A New Way of Life by Dr. David Servan-Scheiber. It talks about how we should live and eat. I almost wrote, "with cancer" but it really talks about how we should live and eat all the time. More variety of fruits and vegetables (organic if possible). Organic dairy. Little meat. Wild Fish. Green tea. Pomegranate juice. Oh and for good stuff, dark chocolate with a minimum of 70% cocoa. Little or no white sugar. No hydrogenated oils. Little white flour. If you are interested I'd say read the book. It is a great read.
I have been adapting my diet to incorporate these healthy and cancer fighting foods and eliminate the things that don't have a positive impact. For those who know me, they know I usually eat pretty well. I have watched my diet for 4 or 5 years. But this has required extra concentration and effort for me. I haven't had coffee since last Wednesday.
I'm eating right. Exercising. I am adding my yoga back this week. And keeping cancer at bay.
Thank you for sharing my cancer journey. I'm signing off this blog for now. I will be preparing for the Apple Cider Century, a 100 mile bike ride the end of September. I will be working on other writing projects and I am back to work full time. I appreciate all of the prayers, support, suggestions and cheering throughout the last 8 months. It was an enormous comfort to me as I wrote that I knew you were all there waiting, listening and caring. I wouldn't have made it so easily without you.
I am looking forward...
I still have local pain and discomfort from my chest surgeries. And doctors visits every few weeks or month but it is manageable. The nerve damage may last up to two years. I have decided there is no sense dwelling on it.
C, a survivor friend, summed up better than I could my current thoughts about my cancer, "I may get cancer again. I can't help that. But I'll know that I did everything I could to prevent it." That is my current strategy.
I have been reading a book she suggested, a book called AntiCancer, A New Way of Life by Dr. David Servan-Scheiber. It talks about how we should live and eat. I almost wrote, "with cancer" but it really talks about how we should live and eat all the time. More variety of fruits and vegetables (organic if possible). Organic dairy. Little meat. Wild Fish. Green tea. Pomegranate juice. Oh and for good stuff, dark chocolate with a minimum of 70% cocoa. Little or no white sugar. No hydrogenated oils. Little white flour. If you are interested I'd say read the book. It is a great read.
I have been adapting my diet to incorporate these healthy and cancer fighting foods and eliminate the things that don't have a positive impact. For those who know me, they know I usually eat pretty well. I have watched my diet for 4 or 5 years. But this has required extra concentration and effort for me. I haven't had coffee since last Wednesday.
I'm eating right. Exercising. I am adding my yoga back this week. And keeping cancer at bay.
Thank you for sharing my cancer journey. I'm signing off this blog for now. I will be preparing for the Apple Cider Century, a 100 mile bike ride the end of September. I will be working on other writing projects and I am back to work full time. I appreciate all of the prayers, support, suggestions and cheering throughout the last 8 months. It was an enormous comfort to me as I wrote that I knew you were all there waiting, listening and caring. I wouldn't have made it so easily without you.
I am looking forward...
Wednesday, June 16, 2010
Recovery .. different measures
Recovery: I'm sure it's different for women, men and different people of different ages.
I know what it means to me:
Yesterday I put on perfume.
Today I put on lipstick and wore a pair of strappy sandals to work.
This morning, I danced in the bathroom while my favorite song was playing.
So, I am recovering. Looking forward to a bike ride this weekend.
I know what it means to me:
Yesterday I put on perfume.
Today I put on lipstick and wore a pair of strappy sandals to work.
This morning, I danced in the bathroom while my favorite song was playing.
So, I am recovering. Looking forward to a bike ride this weekend.
Wednesday, June 9, 2010
Writing and Yoga- a new project
Today is a day of new beginnings for me. I have a doctor's release to start exercising today. The limitations are I can exercise but I can't lift anything and can't put any pressure on my chest. Piece of cake! So I will be at a biking class this afternoon, spinning my legs in little circles on a stationary bike in the dark while the music is playing. I will be sweating happily. I ate way too much delicious food at a business meeting yesterday (those brownies perched on the table just in front of me were unbelievable, I couldn't resist) so I will be happy to be able to burn some extra calories.
I have also started a new project today. 21-800-5. A confluence of readings and events over the past few days got me thinking and stewing. I'll take you through my thought journey. One, Yogic Muse, a yoga writer I read blogged about this project. It is a community project for 21 days to write 800 words each day and do yoga 5 times a week.
Two, I read an entry I read this entry yesterday from the Daily OM called Translating our Feelings.
It talks about how when we approach new things we might think we are scared about something but really it is excitement we feel. Hmmm.
Three, I had a conversation with some friends about the trauma of the last six months. Cancer is a tough road. I've written about the testing, diagnosis, surgeries, chemotherapy and some of the millions of doctor's appointments (ok, so it seems like millions). Cancer is tough not only for the physical hardships but for the mental ones as well. There are so many life-altering conditions. One of the comments from one of the doctors in the last few weeks was very specific, "don't make any major decisions in your life right now." That in itself set me to thinking. I think people act erratically as they sit in this tailspin of cancer. I know in the last few weeks I have thought that chucking everything and living on a beach or on a mountain with just my family would be the right choice. Of course that money thing always gets in the way! I have chalked that up to just needing a vacation. I have sat here and tried to imagine what other people do as they recover from cancer. Quit their jobs? Move? Change their friends? I can't think of them, just a lack of imagination this morning. But I have felt more and different kinds of stress in the last few months than I have ever felt before.
So I joined this writing-yoga project in time to start today. New Project I decided to join so I can explore my writing a bit more deliberately. Writing takes me to a wonderful place. It calms my mind and heart. For me, every time, starting to write is scary. As I walk toward my desk, I feel my heart pounding in my ears and my skin gets hot. I am not sure why. Once I get there I am engaged. It is about capturing the essence of truth as I see it at that particular moment.
Am I scared because I am putting myself out there for so many people to see? Is it because it isn't safe? I'm not sure why. Is it because we are scared to be successful? If I, or anyone who takes risks, is scared of how it will change their current life? Or am I scared at all and is it like the writer wrote about in the Daily OM, is it really excitement I feel? I think true fulfillment in life comes in identifying what you want and then figuring out a way to get those things in your life. I have done it, in my work and in my life but each time requires diligent effort and thought. Each time, I have had to make a deliberate decision, make a goal and then work hard to meet that goal. It doesn't come easily to me. I know some people that it comes easily to and I am just a little bit jealous of them. I also know people who have not been willing to take any risks at all and have lived a sheltered life. Of all them, I know many happy people but is there a difference between happiness and fulfillment? I want to explore all these thoughts in my writing.
The yoga is a bonus. I went to a great meditation class with a Buddhist monk sponsored by a local hospital that I have been meaning to tell you about for the last few weeks so I hope to weave his story into a blog entry or two.
I started my first novel when I was 12. I remember sitting on the basement stairs in our house in suburban Chicago. The typewriter was perched in front of me precariously. I typed two pages. I remember coming up and proclaiming prophetically to my mother, "I don't know enough to write yet." I want to see if I know enough now. I will stretch and write both personally and fictionally over the next 21 days. I won't make you suffer through all of it. But if I think it might be interesting, I'll post some of it here on my blog. I'm looking forward...
By the way this is my first day and my first 917 words...
Sunday, June 6, 2010
Summer Rain
It seems more like spring than June. All weekend in Chicago bursts of rain have come and then just as quickly gone. Yesterday I sat on our balcony most of the day and I marveled at how lush and green the trees are in Lincoln Park. I drank coffee and watched the soccer and baseball games off in the distance. I am resting. Well resting for me. Today I cleaned my home office and filed stuff that has been piling up for a couple of years. I also laid out the plans for how to train for the Apple Cider century bike ride that I want to do in the fall. I am not allowed to exercise yet. No yoga. No biking. No lifting anything over 10 lbs.
I am amazed at how tired I am. Perhaps I shouldn't be surprised. Two surgeries and twelve weeks of chemo since December 14th. I used to get up in the middle of the night and read, or write but now I never get up. I wouldn't say I sleep but I don't get out of bed. I am struggling with working all day. Yet I am not in my "chair" anymore. You know, there was a big, black leather recliner I lived in post surgery and during chemo. I haven't sat in it in a month. Not even after surgery 12 days ago. Weekend afternoons I lie on the couch and watch cycling races on television and nap. Cycling races are very long so I usually don't miss much.
I am worried that the tiredness is menopause. I am on Tamoxifen for the next five years to prevent a recurrence and it guarantees menopause. But I think that mostly it has caused hot flashes. I don't have terrible hot flashes, just 20 or so a day. I only wear short sleeves shirts and layer everything. At night, I crawl into bed cold, cover up with a sheet, blanket and comforter. And every half hour or so I wake, adding or subtracting layers. Usually I wake, flipping the covers off, then wake every 15 minutes adding a layer back on.
I wish I could go away for a few days. It's not possible right now. But tonight I felt like we were on vacation. We walked to a neighborhood place, a romantic dinner at a little French bistro and I sat with the open windows at my back while it rained. I could hear the car tires hissing through the water on the street and people racing, squealing through the showers. I sat and enjoyed the soft music and the gentle conversations of the room.
Dinner was delicious, fresh summer fish. I'm not sure when that happened but things taste normal again. I snacked on a couple of ginger snaps yesterday and I thought while I was eating them, "now why did I live on these for a month?" I celebrated that things taste normal again tonight and had my favorite Profiteroles, which are little puff pastry shells stuffed with ice cream and covered in hot fudge.
I'm looking forward ....
I am amazed at how tired I am. Perhaps I shouldn't be surprised. Two surgeries and twelve weeks of chemo since December 14th. I used to get up in the middle of the night and read, or write but now I never get up. I wouldn't say I sleep but I don't get out of bed. I am struggling with working all day. Yet I am not in my "chair" anymore. You know, there was a big, black leather recliner I lived in post surgery and during chemo. I haven't sat in it in a month. Not even after surgery 12 days ago. Weekend afternoons I lie on the couch and watch cycling races on television and nap. Cycling races are very long so I usually don't miss much.
I am worried that the tiredness is menopause. I am on Tamoxifen for the next five years to prevent a recurrence and it guarantees menopause. But I think that mostly it has caused hot flashes. I don't have terrible hot flashes, just 20 or so a day. I only wear short sleeves shirts and layer everything. At night, I crawl into bed cold, cover up with a sheet, blanket and comforter. And every half hour or so I wake, adding or subtracting layers. Usually I wake, flipping the covers off, then wake every 15 minutes adding a layer back on.
I wish I could go away for a few days. It's not possible right now. But tonight I felt like we were on vacation. We walked to a neighborhood place, a romantic dinner at a little French bistro and I sat with the open windows at my back while it rained. I could hear the car tires hissing through the water on the street and people racing, squealing through the showers. I sat and enjoyed the soft music and the gentle conversations of the room.
Dinner was delicious, fresh summer fish. I'm not sure when that happened but things taste normal again. I snacked on a couple of ginger snaps yesterday and I thought while I was eating them, "now why did I live on these for a month?" I celebrated that things taste normal again tonight and had my favorite Profiteroles, which are little puff pastry shells stuffed with ice cream and covered in hot fudge.
I'm looking forward ....
Sunday, May 30, 2010
Bike The Drive
Bike the Drive happens every Memorial Day weekend in Chicago. The city closes down the entire length of Lake Shore Drive.... roughly 20+ miles along the lake... and turns it over to cyclists from 6 a.m. to 10 a.m. and it is a riot. There are kids with parents, tandems, reclining bikes and people who have their bikes decorated.
As I sat and watched it from my window in our apartment I thought what a difference a year makes. Last year, we biked 10 miles with our son and some friends of his and then hosted a breakfast open house for 25. It was a great way to spend the day. I love cooking for company.
I wish I was riding today as it is a beautiful day; sunny with no clouds in the sky and the park is filled with green tree tops. The water looks like there are diamonds shimmering on the surface. The temperature is in the 70's. I do not have a doctors OK yet after my surgery to get back on the bike (not that I am well enough anyway, I have been up on and off since 3 a.m. in pain and feel like I will not be better for another couple weeks ) Ken ran out for a quick ride up north to Hollywood and back and our friends Ruth and Jonathon have gone south downtown on Bike the Drive to the museum campus. The four of us will be here for breakfast, which I am cooking.
It has been a hectic week, Monday evening while I was just home recovering from surgery, Ken got ill from a kidney stone and Jonathon took him to the Emergency Room while I sat home and waited. He finally returned at 4 a.m., on painkillers with lots of interesting stories about cops in the ER, and motorcycle accidents.
I am surprised by how much pain I have been in. I thought this surgery would be simple and that recovery would be easy. I have some nerve damage on one side and am having lots of pain. I started to have allergic reactions to the pain killers again so I wobble between pain or pain killers combined with Benadryl which puts me straight to sleep. Then yesterday I got a cold. Today Ken woke up with one. Talk about too much drama.
So we are having a quiet holiday weekend, hopefully one with lots of rest and without any trips to the hospital. I did run out to the store for a roast. Even though it is warm, a good pot roast with potatoes and onions will make the apartment smell good and will provide comfort food as we look forward to feeling better.
As I sat and watched it from my window in our apartment I thought what a difference a year makes. Last year, we biked 10 miles with our son and some friends of his and then hosted a breakfast open house for 25. It was a great way to spend the day. I love cooking for company.
I wish I was riding today as it is a beautiful day; sunny with no clouds in the sky and the park is filled with green tree tops. The water looks like there are diamonds shimmering on the surface. The temperature is in the 70's. I do not have a doctors OK yet after my surgery to get back on the bike (not that I am well enough anyway, I have been up on and off since 3 a.m. in pain and feel like I will not be better for another couple weeks ) Ken ran out for a quick ride up north to Hollywood and back and our friends Ruth and Jonathon have gone south downtown on Bike the Drive to the museum campus. The four of us will be here for breakfast, which I am cooking.
It has been a hectic week, Monday evening while I was just home recovering from surgery, Ken got ill from a kidney stone and Jonathon took him to the Emergency Room while I sat home and waited. He finally returned at 4 a.m., on painkillers with lots of interesting stories about cops in the ER, and motorcycle accidents.
I am surprised by how much pain I have been in. I thought this surgery would be simple and that recovery would be easy. I have some nerve damage on one side and am having lots of pain. I started to have allergic reactions to the pain killers again so I wobble between pain or pain killers combined with Benadryl which puts me straight to sleep. Then yesterday I got a cold. Today Ken woke up with one. Talk about too much drama.
So we are having a quiet holiday weekend, hopefully one with lots of rest and without any trips to the hospital. I did run out to the store for a roast. Even though it is warm, a good pot roast with potatoes and onions will make the apartment smell good and will provide comfort food as we look forward to feeling better.
Monday, May 24, 2010
Back under the Knife
Today, I underwent surgery to work on reconstruction of my breasts. Here is the latest on my construction project!
At the initial massive excavation on December 14th , they inserted some place holders that expanded to make room for my new TA TAs. Now that I am expanded and healthier, they have to swap those expanders out for the real silicone TA TAs. Thank goodness as the equipment felt like two hockey pucks (sorry had to throw a little Blackhawks humor in--at least they didn't knock my teeth out!).
Surgery happened this morning at 7:30 a.m. (see they even have construction hours). And while they were in there they fixed a dog leg (I swear that is what they call it). Moved one Ta Ta up a floor (the ground was soft, it had slipped down). And then they took some dirt (ok, fat from my tummy) and used it to fill in the landscape where there were some holes where they had scraped down to the bone. The procedure was successful, they say. Who can tell with the swelling and bandages!
I was home by early afternoon. In a lot of pain so we upped the dosage of pain killers a bit and now I feel good. The doctor said no biking for a week but I think he was kidding. No lifting and no jogging for 60 days. The jogging he does not have to worry about!
A week sounds a little aggressive, even for me. So I will take it day by day and start with gently yoga stretches in a week. That worked well last time. This is perhaps the last procedure I need so I am excited and looking forward.
At the initial massive excavation on December 14th , they inserted some place holders that expanded to make room for my new TA TAs. Now that I am expanded and healthier, they have to swap those expanders out for the real silicone TA TAs. Thank goodness as the equipment felt like two hockey pucks (sorry had to throw a little Blackhawks humor in--at least they didn't knock my teeth out!).
Surgery happened this morning at 7:30 a.m. (see they even have construction hours). And while they were in there they fixed a dog leg (I swear that is what they call it). Moved one Ta Ta up a floor (the ground was soft, it had slipped down). And then they took some dirt (ok, fat from my tummy) and used it to fill in the landscape where there were some holes where they had scraped down to the bone. The procedure was successful, they say. Who can tell with the swelling and bandages!
I was home by early afternoon. In a lot of pain so we upped the dosage of pain killers a bit and now I feel good. The doctor said no biking for a week but I think he was kidding. No lifting and no jogging for 60 days. The jogging he does not have to worry about!
A week sounds a little aggressive, even for me. So I will take it day by day and start with gently yoga stretches in a week. That worked well last time. This is perhaps the last procedure I need so I am excited and looking forward.
Monday, May 17, 2010
Good News
Last week I had a follow up appointment with my surgical oncologist. After the exam, I asked him if he thought I was cancer free. He answered cautiously, "I think you are cancer free for now."
I have been replaying it and celebrating in my brain all week. Please celebrate with me.
I have been replaying it and celebrating in my brain all week. Please celebrate with me.
Sunday, May 9, 2010
Kedging
I am re-reading a book, called Younger Next Year for Women by Chris Crowley and Henry S. Lodge, M.D., to kick start me mentally back into a healthy lifestyle as I recover from cancer. There is an important term in it, that really struck a chord for me. Kedging. It is a nautical term that means to move (a ship) by means of a line attached to a small anchor dropped at the distance and in the direction desired. (Merriam-Webster) So what does that mean for sailing? On a windless day, if you really need to go a particular direction on a sail boat, you take a little kedge anchor and put it on a dinghy and you row out the direction you want the boat to go. You go as far as you can and then you drop and secure the kedge anchor. Then the people in the boat PULL the boat to the kedge anchor. It is done by brute force.
These authors first wrote a book called Younger Next Year that was all about men growing older (or how not to).** I felt like I was missing something after Ken chuckled his way through it, so I read it too. Then a few years ago, they wrote one for women and I read that one. The book tells us pretty much what we should know being healthy as we age but in a way that boils it down to some basic rules and easy takeaways. And it has some great stories. It gave Ken and I a vocabulary to use with each other to talk about healthy aging. It has been at the heart of our trying to get healthier over the last few years.
Younger Next Year encourages you to kedge. I have made up variations of the word. I am a "kedger". I live my life to Kedge. So, what does it mean to kedge in life? It is setting a goal and then pulling yourself to it, come what may. Ken and I have been kedging trips since we first read the book. Last winter ('08-'09), Ken and I made plans for an early '09 summer bike trip in N. Carolina. The highlight was riding a couple of hundred miles in 5 days. In case you didn't know, N. Carolina has lots of hills! It forced us to put in a lot of miles in Chicago and the hills of Wisconsin last spring. I remember one particularly morning in May on the Chicago lakefront, I swear there were only 6 people that morning running and biking in the freezing drizzle. We were kedging. We were biking 22 miles as the sun rose, able to see our breath, before work, so we would be ready for our trip.
I am a kedger, (perhaps to the chagrin of the people who work with me). I set goals and then I figure out how to get there. My personal short term kedge is to ride the Apple Cider Century in late September in Michigan. 100 miles in one day. The brochure is stuck with a magnet to my white board. Hold me to it. You can join us, they offer long and short rides and lots of families come.
This morning, it was sunny and a very brisk 45 degrees in Chicago, staying in bed seemed like a luscious option. Instead, we went and rode 12 miles alongside the glistening lakefront. Yoga this afternoon. I am working on my kedge. The kedge gets me out of bed. My long term kedge is to ride bikes with Ken across the country. The Apple Cider gets me one step closer to that.
Kedge with me. I am looking forward.
**Thanks to Nick for suggesting Younger Next Year all those years ago, I I have given it to people and they have given it to people and so on. It is a life changing book and you started the positive wave.
These authors first wrote a book called Younger Next Year that was all about men growing older (or how not to).** I felt like I was missing something after Ken chuckled his way through it, so I read it too. Then a few years ago, they wrote one for women and I read that one. The book tells us pretty much what we should know being healthy as we age but in a way that boils it down to some basic rules and easy takeaways. And it has some great stories. It gave Ken and I a vocabulary to use with each other to talk about healthy aging. It has been at the heart of our trying to get healthier over the last few years.
Younger Next Year encourages you to kedge. I have made up variations of the word. I am a "kedger". I live my life to Kedge. So, what does it mean to kedge in life? It is setting a goal and then pulling yourself to it, come what may. Ken and I have been kedging trips since we first read the book. Last winter ('08-'09), Ken and I made plans for an early '09 summer bike trip in N. Carolina. The highlight was riding a couple of hundred miles in 5 days. In case you didn't know, N. Carolina has lots of hills! It forced us to put in a lot of miles in Chicago and the hills of Wisconsin last spring. I remember one particularly morning in May on the Chicago lakefront, I swear there were only 6 people that morning running and biking in the freezing drizzle. We were kedging. We were biking 22 miles as the sun rose, able to see our breath, before work, so we would be ready for our trip.
I am a kedger, (perhaps to the chagrin of the people who work with me). I set goals and then I figure out how to get there. My personal short term kedge is to ride the Apple Cider Century in late September in Michigan. 100 miles in one day. The brochure is stuck with a magnet to my white board. Hold me to it. You can join us, they offer long and short rides and lots of families come.
This morning, it was sunny and a very brisk 45 degrees in Chicago, staying in bed seemed like a luscious option. Instead, we went and rode 12 miles alongside the glistening lakefront. Yoga this afternoon. I am working on my kedge. The kedge gets me out of bed. My long term kedge is to ride bikes with Ken across the country. The Apple Cider gets me one step closer to that.
Kedge with me. I am looking forward.
**Thanks to Nick for suggesting Younger Next Year all those years ago, I I have given it to people and they have given it to people and so on. It is a life changing book and you started the positive wave.
Thursday, May 6, 2010
Pain and Memory
"We do not remember days, we remember moments."
I have decided only 7 weeks after chemo that I can't remember the pain of the chemo or of surgery. That is a very good thing. I have an example that only women will feel, sorry but it is the only thing I can come up with. I remember the surgery and chemo the same way that I remember going through labor. . Women who have had children will get this I think. Or perhaps others who have gone through an accident, surgery or perhaps even a heart attack will get it. My memory says labor was awful. And the pain was real and at moments agonizing. I remember that much. But I don't really remember the physical pain of labor, all these years later. It doesn't touch me. The memory thankfully has slipped away. I can remember moments but I don't remember the pain of that moment. With labor, it slipped away within a day or two. Perhaps because of sleep deprivation! Or perhaps with the joy of a newborn.
The pain of chemo and the surgery is like that. I can look back and say, "the bone pain was the worst." But I don't remember what that felt like. Even though I was only done 7 weeks ago, the physical memory of the pain has slipped away. That ought to be reassuring to any one who has to go through something like this. Our brains are wonderful things and somehow they protect us from the physical memory of the pain while we are awake.
This came to over the last few days because of the nightmare. Only in my dreaming memory did the physical feeling of the pain resurface. I wonder if it is like this for others. And last night I slept fine. I'm looking forward ...
I have decided only 7 weeks after chemo that I can't remember the pain of the chemo or of surgery. That is a very good thing. I have an example that only women will feel, sorry but it is the only thing I can come up with. I remember the surgery and chemo the same way that I remember going through labor. . Women who have had children will get this I think. Or perhaps others who have gone through an accident, surgery or perhaps even a heart attack will get it. My memory says labor was awful. And the pain was real and at moments agonizing. I remember that much. But I don't really remember the physical pain of labor, all these years later. It doesn't touch me. The memory thankfully has slipped away. I can remember moments but I don't remember the pain of that moment. With labor, it slipped away within a day or two. Perhaps because of sleep deprivation! Or perhaps with the joy of a newborn.
The pain of chemo and the surgery is like that. I can look back and say, "the bone pain was the worst." But I don't remember what that felt like. Even though I was only done 7 weeks ago, the physical memory of the pain has slipped away. That ought to be reassuring to any one who has to go through something like this. Our brains are wonderful things and somehow they protect us from the physical memory of the pain while we are awake.
This came to over the last few days because of the nightmare. Only in my dreaming memory did the physical feeling of the pain resurface. I wonder if it is like this for others. And last night I slept fine. I'm looking forward ...
Wednesday, May 5, 2010
Nightmare
My life is divided right now. I have been in the office the last few weeks 6 hours a day and am just getting back into the rhythm of "working". It's not that I haven't been there for the last three weeks, it is just that I am finally getting my concentration and focus back. Who knew you could lose that? It's my role to drive the business forward and I finally feel like I am doing that again. When I am home, we are getting back into our more normal routine of family dinners, and family things (like laundry!).
Weekends I have been devoting to getting into better shape. During the week, I just don't have the energy to do both. This last weekend, we biked both mornings. The first day I biked so slowly, I am surprised I didn't fall over. And when I got home I had to lay on the floor and recover before showering. Follow that up with a long Saturday afternoon walk. Why was I so purposeful? The real answer was I wanted to try a huge FiveGuys cheeseburger and fries and couldn't in my mind justify the calories and splurging without a huge workout day to support it. (The burger was great!)
Sunday morning, we were back on the bike and I felt better. The answer is that it is always tough to get into shape, the cancer just makes it harder. You have to want it. And I do. My plan is to continue to alternate between during the week and weekends. But everything is a little off plan today.
Last night I had my first nightmare about having breast cancer and surgery. I woke up crying this morning. I am an optimist. I have not had even one moment where I have doubted that this will be fine. That I will make it. That I will be cured of cancer. But reliving the surgery in my dreams was terrifying. It made today a little longer. It made me a little more tired. I struggled to get to work this morning.
I am looking forward and I will plan on more restful sleep for tonight.
Weekends I have been devoting to getting into better shape. During the week, I just don't have the energy to do both. This last weekend, we biked both mornings. The first day I biked so slowly, I am surprised I didn't fall over. And when I got home I had to lay on the floor and recover before showering. Follow that up with a long Saturday afternoon walk. Why was I so purposeful? The real answer was I wanted to try a huge FiveGuys cheeseburger and fries and couldn't in my mind justify the calories and splurging without a huge workout day to support it. (The burger was great!)
Sunday morning, we were back on the bike and I felt better. The answer is that it is always tough to get into shape, the cancer just makes it harder. You have to want it. And I do. My plan is to continue to alternate between during the week and weekends. But everything is a little off plan today.
Last night I had my first nightmare about having breast cancer and surgery. I woke up crying this morning. I am an optimist. I have not had even one moment where I have doubted that this will be fine. That I will make it. That I will be cured of cancer. But reliving the surgery in my dreams was terrifying. It made today a little longer. It made me a little more tired. I struggled to get to work this morning.
I am looking forward and I will plan on more restful sleep for tonight.
Friday, April 30, 2010
Up the Road a piece
My father's father used to tell us when we were very young and driving with him anywhere that where we were going was up the road a piece. He would never answer "the question". The "How long until we get there?" question. Every place was up the road a piece.
I went for a follow up visit to the oncologist yesterday. Six weeks since my last chemo session. Three weeks since I was sinking, now I am on the mend. Or, some days I am on the mend. I went to the doctors with a list of questions in hand. My overall sense is that somehow I have to make friends with my body again. It has changed so much in more ways than I can really share (you don't really want to hear me discuss menopause do you?). So I had issues to discuss with the doctor. Two issues related to menopause and one issue I'll review with you: why am I having so much joint and muscle pain. I feel like I have arthritis and every muscle hurts every time I use it.
Now, let's be clear. My doctor does not tolerate my drama and my humor very well. Ok, he doesn't handle them at all. He ignores them. So, there I am asking questions sincerely, from my little green index card clutched in my hand. "Why do I have so much pain in my joints?" This at least he has an answer for, "your bone marrow is rebuilding." But then I ask the killer follow up question. "How long will this last?" His answer, "a while."
On to muscle aches and pains. Why, I ask. How long? He volleys it back, am I taking any drugs? An occasional Advil, I answer. Does that help, he counters. Yes. Ok, then do that when it hurts, he answers. I feel like saying, DUH! But I push gently, how long will this last. You'll feel better in a while, he says again. A while....
It isn't until today that I realize he is answering symptoms and I am looking for a longer term answer. Perhaps he knows and doesn't want to answer. Perhaps for every person it is different and he can't answer. But the question is still there on the edges of my mind. When will I feel better? Will I ever be back to normal?
And the answer is in "a while" or as my grandfather would say, "up the road a piece".
I went for a follow up visit to the oncologist yesterday. Six weeks since my last chemo session. Three weeks since I was sinking, now I am on the mend. Or, some days I am on the mend. I went to the doctors with a list of questions in hand. My overall sense is that somehow I have to make friends with my body again. It has changed so much in more ways than I can really share (you don't really want to hear me discuss menopause do you?). So I had issues to discuss with the doctor. Two issues related to menopause and one issue I'll review with you: why am I having so much joint and muscle pain. I feel like I have arthritis and every muscle hurts every time I use it.
Now, let's be clear. My doctor does not tolerate my drama and my humor very well. Ok, he doesn't handle them at all. He ignores them. So, there I am asking questions sincerely, from my little green index card clutched in my hand. "Why do I have so much pain in my joints?" This at least he has an answer for, "your bone marrow is rebuilding." But then I ask the killer follow up question. "How long will this last?" His answer, "a while."
On to muscle aches and pains. Why, I ask. How long? He volleys it back, am I taking any drugs? An occasional Advil, I answer. Does that help, he counters. Yes. Ok, then do that when it hurts, he answers. I feel like saying, DUH! But I push gently, how long will this last. You'll feel better in a while, he says again. A while....
It isn't until today that I realize he is answering symptoms and I am looking for a longer term answer. Perhaps he knows and doesn't want to answer. Perhaps for every person it is different and he can't answer. But the question is still there on the edges of my mind. When will I feel better? Will I ever be back to normal?
And the answer is in "a while" or as my grandfather would say, "up the road a piece".
Thursday, April 29, 2010
ART
I was in D.C on business from Sunday to Tuesday night. When I arrived in DC on Sunday I had an extra couple of hours before my meetings began. So I did one of my all time favorite things. I went to the National Gallery of Art.
Sunday was a beautiful spring day. 70 degrees and sunny. Unbelievably mild. DC is wonderful in the Spring, so much warmer than Chicago. I haven't been able to exercise as much as I would like. I took off my jacket as I walked and then I got so warm I took off my scarf.
I always try to visit the National Gallery of Art when I am in DC. I tend to be an East building girl if I am there for a short visit. The east building is where they have special exhibits and it is a more modern building. There were two modern exhibits and a special Spanish exhibit of oil paintings and sculptures called "The Sacred Made Real", of Spanish work made between 1700-1800.
In the modern exhibit I saw a Jackson Pollock painting (whose work I have never really appreciated) called Ritual painted in 1957. It just sucked me in. It was so complicated. And an Andy Warhol painting of the Campbell soup can. Not the Tomato soup, this one was Chicken Noodle soup. And it was so clear and straightforward.
I saw a Salvador Dali painting of The Last Supper that was one of the most beautiful paintings I have ever seen. The light and detail. There is something to me about turning on my Ipod to classical music which drowns out the murmurs and other conversations, and soaking up art. It makes me feel light. The beauty of art brings peace to my heart.
I'm going to find something beautiful to look at today to keep that lightness of spirit going.
Sunday was a beautiful spring day. 70 degrees and sunny. Unbelievably mild. DC is wonderful in the Spring, so much warmer than Chicago. I haven't been able to exercise as much as I would like. I took off my jacket as I walked and then I got so warm I took off my scarf.
I always try to visit the National Gallery of Art when I am in DC. I tend to be an East building girl if I am there for a short visit. The east building is where they have special exhibits and it is a more modern building. There were two modern exhibits and a special Spanish exhibit of oil paintings and sculptures called "The Sacred Made Real", of Spanish work made between 1700-1800.
In the modern exhibit I saw a Jackson Pollock painting (whose work I have never really appreciated) called Ritual painted in 1957. It just sucked me in. It was so complicated. And an Andy Warhol painting of the Campbell soup can. Not the Tomato soup, this one was Chicken Noodle soup. And it was so clear and straightforward.
I saw a Salvador Dali painting of The Last Supper that was one of the most beautiful paintings I have ever seen. The light and detail. There is something to me about turning on my Ipod to classical music which drowns out the murmurs and other conversations, and soaking up art. It makes me feel light. The beauty of art brings peace to my heart.
I'm going to find something beautiful to look at today to keep that lightness of spirit going.
Wednesday, April 21, 2010
How Brains Work
I am back to being busy. Just like most people. We are working, taking care of our children, helping in our communities. Sometimes we are busy staying or getting healthy. Somewhere along the line I learned that being busy was important. I learned that getting things accomplished meant I had value and worth.
Over the last 25 or 30 years I got addicted to being busy. Internally I thought, if I had nothing to do I wasn't worth anything to anyone, even to myself. At times busy thoughts attacked my brain to the point where I joked that I had monkey mind. I swore there were monkeys careening around in my brain unwilling to let me settle down and be at peace. Or maybe that is just the ADHD.
Cancer changed things. Being sick caused me to look at being busy and time differently. This last week as I have been plunged back into work, I see those busy feelings chattering like monkeys, just at the edge of my sight, threatening to come back in. I am doing my best to keep them caged and out of my mind.
When I was in treatment, it was much easier to treat each day just as it was. To sit and watch the sun rise and set from my chair. To breathe and deal with the pain and understand my body and reflect. I rarely had thoughts of wash that needed to be done or dishes that needed to be cleaned or projects that deserved more time than I am capable of giving at work.
How can I just be (not do!) and have value? I think that is a tough lesson in American culture. I am imperfect, scarred and damaged. We are all. What am I afraid of? How come when I was sickest and I had the most time I was most accepting of myself?
I keep thinking that I have to rush to get done. I have to get enough money to retire (and isn't that looking more difficult every day!), I want to reach my growth goals for my business, eat healthy and be active physically (which takes work at any age!) and the list goes on.
I realize that the I am my best on my bike. There is no hurry. On the bike, I am in the moment. Of course, there is no rush because I'm a very slow bike rider. It just is. I am the same when I do yoga.
For now, I am not looking forward. I am living in the moment. I will appreciate all that I have and that I am. I will try to keep the monkeys in the trees in the distance.
Over the last 25 or 30 years I got addicted to being busy. Internally I thought, if I had nothing to do I wasn't worth anything to anyone, even to myself. At times busy thoughts attacked my brain to the point where I joked that I had monkey mind. I swore there were monkeys careening around in my brain unwilling to let me settle down and be at peace. Or maybe that is just the ADHD.
Cancer changed things. Being sick caused me to look at being busy and time differently. This last week as I have been plunged back into work, I see those busy feelings chattering like monkeys, just at the edge of my sight, threatening to come back in. I am doing my best to keep them caged and out of my mind.
When I was in treatment, it was much easier to treat each day just as it was. To sit and watch the sun rise and set from my chair. To breathe and deal with the pain and understand my body and reflect. I rarely had thoughts of wash that needed to be done or dishes that needed to be cleaned or projects that deserved more time than I am capable of giving at work.
How can I just be (not do!) and have value? I think that is a tough lesson in American culture. I am imperfect, scarred and damaged. We are all. What am I afraid of? How come when I was sickest and I had the most time I was most accepting of myself?
I keep thinking that I have to rush to get done. I have to get enough money to retire (and isn't that looking more difficult every day!), I want to reach my growth goals for my business, eat healthy and be active physically (which takes work at any age!) and the list goes on.
I realize that the I am my best on my bike. There is no hurry. On the bike, I am in the moment. Of course, there is no rush because I'm a very slow bike rider. It just is. I am the same when I do yoga.
For now, I am not looking forward. I am living in the moment. I will appreciate all that I have and that I am. I will try to keep the monkeys in the trees in the distance.
Sunday, April 18, 2010
Web Resources for Breast Cancer Patients
I haven't written all week because I worked and I forgot how time consuming work is. I worked what seemed like all day, every day last week and then on Friday I went to a funeral (the father of a friend). Man, work is exhausting! I had forgotten. Or perhaps work was not this hard before. Add into the week two doctors appointments (one of which I canceled), a couple of association meetings with drive time, a dinner out and a husband with a bad cough and cold.
All of this left little time to think about the fact that I am a recovering cancer patient. Not to say that it didn't come up. Everywhere I went most people notice I am very bald. I paint on eyebrows and eyelashes so most people don't notice that. But people who know me say I look tired. Perhaps because I am.
I find again and again, everyone talks to me about someone who was just diagnosed or has breast cancer. It seems a little overwhelming but gives me opportunity to share what I have learned. I realize I read more than most and I did lots and lots of research about treatments and options for care because it made me feel more in control of my situation and my life. So, I decided to post a few links here that I found most helpful to give other people a shortcuts.
I asked all sorts of questions of my doctors, I couldn't find all the sites I used but now I found a list of questions that was almost identical to the list I put together. Interestingly, it was written by my oncologist. Here is the link: Breast Cancer Questions to ask your Doctors.The entire website has lots of information from him about breast cancer. I wish I had found it earlier.
In addition, I had a great guide to the exercises to do after surgery that several women have told me they didn't have access to from their hospital. My surgeon from Northwestern Memorial gave me this one. I thought they helped me feel better but (here is my disclaimer) I would certainly suggest you talk to your doctor post-surgery before starting to stretch and exercise! Stretching and regaining resiliancy after Breast Cancer Surgery
I hope this helps one person. I spent the weekend resting and I'm looking forward to next week with a plan for a better balance so I can get some exercise time mixed in with work.
Just a final note:
This week my thoughts are with my friend Grumpy. He couldn't make a meeting I was at as he has had a mini-something (tests to be done). I missed him as he has been a constant supporter sending me funny videos or uplifting emails throughout my entire illness and I was hoping to see him and thank him. So thanks Grumpy, Get Well Soon!
All of this left little time to think about the fact that I am a recovering cancer patient. Not to say that it didn't come up. Everywhere I went most people notice I am very bald. I paint on eyebrows and eyelashes so most people don't notice that. But people who know me say I look tired. Perhaps because I am.
I find again and again, everyone talks to me about someone who was just diagnosed or has breast cancer. It seems a little overwhelming but gives me opportunity to share what I have learned. I realize I read more than most and I did lots and lots of research about treatments and options for care because it made me feel more in control of my situation and my life. So, I decided to post a few links here that I found most helpful to give other people a shortcuts.
I asked all sorts of questions of my doctors, I couldn't find all the sites I used but now I found a list of questions that was almost identical to the list I put together. Interestingly, it was written by my oncologist. Here is the link: Breast Cancer Questions to ask your Doctors.The entire website has lots of information from him about breast cancer. I wish I had found it earlier.
In addition, I had a great guide to the exercises to do after surgery that several women have told me they didn't have access to from their hospital. My surgeon from Northwestern Memorial gave me this one. I thought they helped me feel better but (here is my disclaimer) I would certainly suggest you talk to your doctor post-surgery before starting to stretch and exercise! Stretching and regaining resiliancy after Breast Cancer Surgery
I hope this helps one person. I spent the weekend resting and I'm looking forward to next week with a plan for a better balance so I can get some exercise time mixed in with work.
Just a final note:
This week my thoughts are with my friend Grumpy. He couldn't make a meeting I was at as he has had a mini-something (tests to be done). I missed him as he has been a constant supporter sending me funny videos or uplifting emails throughout my entire illness and I was hoping to see him and thank him. So thanks Grumpy, Get Well Soon!
Saturday, April 10, 2010
The Health of the Patient, not the Diagnosis
My goal all week was to work 1/2 days and rest to build up my strength. Thursday I worked a 1/2 day. Not exactly the 1/2 day I started out thinking I would work. It was more like the 1/2 day my Dad used to talk about when I was young. I used to ask about working a 1/2 day and he would answer, "Sure, you can work a 1/2 day, you pick which twelve hours."
But I made it and next week I have another few longs days staring at me. I feel a bit of a mess. My arms, neck and back are tight. I lift my arms to stretch and I feel like I am pulling on a string that is tied into the middle of a knot that I can't untie. I am sure I am holding my shoulders and head awkwardly. I actually feel awkward generally. Emotionally, I feel like I am not on solid ground. I feel like I am walking on a muddy path with the mud caking up on my boots slowing me down.
My body is a mess. My stomach doesn't work the same. Pizza doesn't taste good (this is perhaps a good thing). Exercise doesn't feel the same. My skin isn't the same. Driving feels different. My balance isn't the same. I certainly don't look the same. (Please don't take this as whining, this is just explaining my new "normal").
I am still on the journey of a cancer patient. There is no road map and my journey is not done. When you get cancer, there are millions of sites that tell you about the diagnosis, the treatment, picking a doctor, options for surgery and types of chemotherapy, side effects of chemotherapy. But there aren't many helpful web sites for what to do when you are done. A friend described it as doctors treating the diagnosis and not your health. That feels right. I am "treated". The medical community doesn't treat my getting healthy as anything they have a stake in. They have "finished" with this stage and in a couple of weeks I see the doctor to start medications to avoid a recurrence.
It is just by chance that the LiveStrong blog this week sent an article about a doctor who had breast cancer and talked about her recovery period as rehab.
http://www.livestrong.com/blog/blog/how-julie-survived-cancer-then-survived-treatment/
Her article talks about how with stroke patients, heart attack patients and many other types of illness there is a much more coordinated post-care treatment plan. With cancer, you just finish. That is where I am right now. I am finished with the treatment part of my journey but I am not sure what is next . This would have been a chemo week. I am filled with joy that I didn't have to go through another round. I am filled with joy that now, three and 1/2 weeks later, I have physically been as low as I will have to go (hopefully for a long time to come).
I am wonderfully, beautifully alive. I'm looking forward and finding my way there slowly.
But I made it and next week I have another few longs days staring at me. I feel a bit of a mess. My arms, neck and back are tight. I lift my arms to stretch and I feel like I am pulling on a string that is tied into the middle of a knot that I can't untie. I am sure I am holding my shoulders and head awkwardly. I actually feel awkward generally. Emotionally, I feel like I am not on solid ground. I feel like I am walking on a muddy path with the mud caking up on my boots slowing me down.
My body is a mess. My stomach doesn't work the same. Pizza doesn't taste good (this is perhaps a good thing). Exercise doesn't feel the same. My skin isn't the same. Driving feels different. My balance isn't the same. I certainly don't look the same. (Please don't take this as whining, this is just explaining my new "normal").
I am still on the journey of a cancer patient. There is no road map and my journey is not done. When you get cancer, there are millions of sites that tell you about the diagnosis, the treatment, picking a doctor, options for surgery and types of chemotherapy, side effects of chemotherapy. But there aren't many helpful web sites for what to do when you are done. A friend described it as doctors treating the diagnosis and not your health. That feels right. I am "treated". The medical community doesn't treat my getting healthy as anything they have a stake in. They have "finished" with this stage and in a couple of weeks I see the doctor to start medications to avoid a recurrence.
It is just by chance that the LiveStrong blog this week sent an article about a doctor who had breast cancer and talked about her recovery period as rehab.
http://www.livestrong.com/blog/blog/how-julie-survived-cancer-then-survived-treatment/
Her article talks about how with stroke patients, heart attack patients and many other types of illness there is a much more coordinated post-care treatment plan. With cancer, you just finish. That is where I am right now. I am finished with the treatment part of my journey but I am not sure what is next . This would have been a chemo week. I am filled with joy that I didn't have to go through another round. I am filled with joy that now, three and 1/2 weeks later, I have physically been as low as I will have to go (hopefully for a long time to come).
I am wonderfully, beautifully alive. I'm looking forward and finding my way there slowly.
Wednesday, April 7, 2010
A Regular Doctor: Neutrophils
Monday morning. I went to see a new general internal medicine doctor at Northwestern, where my cancer doctor and my cancer surgeon practice. It helps to have someone there that can see all my medical records and tests. Before Cancer, I didn't have a "regular" doctor. A couple of times in the last few years if I got a bad cold, I went to the office of ...my big sister... friend...family: Chris. All right, I am not sure what to call her. We have spent holidays with Chris and her husband for 25 years. She has stopped and brought dinners and visited almost every week while I have been sick. She is the closest thing to family that I have that is not family. You have those relationships too I am sure. Chris is also a general internal medicine doctor.
Tuesday, I got my blood results back from doctor visit Monday. My white count is 2.5. Normal is 4-11. From a blood test a year ago at a health fair, my white count was 5.8. So, I have less than half of my normal ability to fight off infection. The doctor sent me an email. She, Dr. U (my new general medicine doctor) talked to Kelly, my oncology nurse, and said I can go back to eating raw fruits and vegetables. For the last several weeks, it was cooked vegetables and only fruits with the skin peeled (like oranges, bananas, apples and pears). In her email she said it is all right because my neutrophil is 1100. Of course, I had no idea what Neutrophils even were. So I looked them up. Here is an excerpt from Medicine.net
Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature. In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).
So at 1100, my Neutrophil is safe but not normal. No sushi yet. I am still washing my hands and using hand sanitizer 7 times a day. I'm not touching many people voluntarily. No shaking hands. No hugs unless I am really really sure you aren't sick!
In the tests, my Vitamin D level came back very low. I had stopped using all Vitamins and supplements while on chemo. But perhaps my Vitamin D level was low before and I just didn't know. With blood results in hand, I got the go ahead to start taking vitamins again and the doctor started me on a prescription of Vitamin D for 12 weeks to boost my Vitamin D level.
I have a sore throat. For a while today, my voice wavered. I am just not used to talking so much! No one who knows me will think that is true, but it is. Looking forward.
Tuesday, I got my blood results back from doctor visit Monday. My white count is 2.5. Normal is 4-11. From a blood test a year ago at a health fair, my white count was 5.8. So, I have less than half of my normal ability to fight off infection. The doctor sent me an email. She, Dr. U (my new general medicine doctor) talked to Kelly, my oncology nurse, and said I can go back to eating raw fruits and vegetables. For the last several weeks, it was cooked vegetables and only fruits with the skin peeled (like oranges, bananas, apples and pears). In her email she said it is all right because my neutrophil is 1100. Of course, I had no idea what Neutrophils even were. So I looked them up. Here is an excerpt from Medicine.net
Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature. In practical clinical terms, a normal ANC is 1.5 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that the patient's activities do not need to be restricted (on the basis of the ANC).
So at 1100, my Neutrophil is safe but not normal. No sushi yet. I am still washing my hands and using hand sanitizer 7 times a day. I'm not touching many people voluntarily. No shaking hands. No hugs unless I am really really sure you aren't sick!
In the tests, my Vitamin D level came back very low. I had stopped using all Vitamins and supplements while on chemo. But perhaps my Vitamin D level was low before and I just didn't know. With blood results in hand, I got the go ahead to start taking vitamins again and the doctor started me on a prescription of Vitamin D for 12 weeks to boost my Vitamin D level.
I have a sore throat. For a while today, my voice wavered. I am just not used to talking so much! No one who knows me will think that is true, but it is. Looking forward.
Tuesday, April 6, 2010
Weird Chemo issues for $150
I am back to work. Yesterday I went to a doctor's office visit first and then to the office for four hours. But today from 9:30-2:30. The longest stretch I have worked at the office in months. The wig didn't last more than hour or two. They seem too tight and I got a brutal headache. Thank goodness for all the cool scarves, turbans and scarves you can wear now. I bought mine from two sites www.4women.com and http://www.headcovers.com/headwear/hats-turbans/
It did feel strange to come home carrying my hair in my hand. I wonder if spending the money on the wigs was a waste. So headaches are one of my weird chemo issues.
Other weird issues: Sunburned eyelids. I have almost no eyelashes (or eyebrows for that matter). When I went out for a walk with my dad for 30 minutes, I burned my eyelids. We were only out for 30 minutes and I couldn't quite figure out why I was in so much discomfort. That was Thursday. I laugh now. It was kind of funny. My eyes also tear up alot. Ken asked what was wrong this morning. I was sitting wiping tears off my face. Nothing. I'm fine. And I really was. My eyes just water.
Sunburned lips. Sunday it was beautiful in the morning. Another sunny, spring day in Chicago (until noon, like I said Chicago). It was almost 65 degrees by the lake. I took my first bike ride since surgery. 15 minutes out and 15 minutes back. A nice first effort. This time I was smart enough to wear sunscreen and dark sunglasses. But I forgot about my lips! So two days of sunburned lips were next. Are you noticing a trend here? I'm going to have to get this sunscreen thing going.
No hair in my nose. My nose runs a lot at random times. I don't understand how all these pieces of our body really work together. The evolution of why every piece is the way it is. No hair is a big deal. Who knew?
But I am off all prescription pain or other medicines. I found out last week that the lovely Ativan I was taking at night (which I thought was a mild sleeping pill) was really like Valium! Probably just as well I didn't know that. So I quit taking that and didn't sleep for a couple of days.
A couple of Advil for the headaches and we'll see how working in the mornings for the rest of the week goes.
It did feel strange to come home carrying my hair in my hand. I wonder if spending the money on the wigs was a waste. So headaches are one of my weird chemo issues.
Other weird issues: Sunburned eyelids. I have almost no eyelashes (or eyebrows for that matter). When I went out for a walk with my dad for 30 minutes, I burned my eyelids. We were only out for 30 minutes and I couldn't quite figure out why I was in so much discomfort. That was Thursday. I laugh now. It was kind of funny. My eyes also tear up alot. Ken asked what was wrong this morning. I was sitting wiping tears off my face. Nothing. I'm fine. And I really was. My eyes just water.
Sunburned lips. Sunday it was beautiful in the morning. Another sunny, spring day in Chicago (until noon, like I said Chicago). It was almost 65 degrees by the lake. I took my first bike ride since surgery. 15 minutes out and 15 minutes back. A nice first effort. This time I was smart enough to wear sunscreen and dark sunglasses. But I forgot about my lips! So two days of sunburned lips were next. Are you noticing a trend here? I'm going to have to get this sunscreen thing going.
No hair in my nose. My nose runs a lot at random times. I don't understand how all these pieces of our body really work together. The evolution of why every piece is the way it is. No hair is a big deal. Who knew?
But I am off all prescription pain or other medicines. I found out last week that the lovely Ativan I was taking at night (which I thought was a mild sleeping pill) was really like Valium! Probably just as well I didn't know that. So I quit taking that and didn't sleep for a couple of days.
A couple of Advil for the headaches and we'll see how working in the mornings for the rest of the week goes.
Wednesday, March 31, 2010
Tackling the tough questions
The other night I had this random thought that I needed to go take a shower and wash my hair. Then I remembered I had no hair.
My last chemotherapy session was two weeks ago. I am still losing my eyelashes but this week I am feeling better. It is sunny and 70+ degrees in Chicago so I took a walk this afternoon with my Dad who has been visiting. Next week I am going to work 1/2 days in the morning at the office instead of in my pj's at home. When I work from home with only an occasional visit to the office it doesn't create a lot of questions. When I have gone out, there are always odd looks and raised eyebrows. I don't think the looks are offensive. Everyone is curious. I have been thinking a lot about the looks and the questions. How do I answer them? Do I answer them?
Which leads to the even more basic question of how do I describe who I am? How do I describe what I am going through? How do I describe my progress? How is the experience of having cancer changed my life?
Am I a cancer survivor? Am I still battling cancer? Am I cancer free? The one thing I know is that I am a mix of emotions. Or perhaps a mess of emotions is a better way to put it. I have been so deep in battle with being sick, I haven't processed this yet. When my mind drifts to those thoughts I push them away and tell myself to just hang on. I try to work on getting through feeling sick. I concentrate on eating right for today. Then I try and rest and get enough sleep.
But I know that soon enough I have to tackle the tough questions.
My last chemotherapy session was two weeks ago. I am still losing my eyelashes but this week I am feeling better. It is sunny and 70+ degrees in Chicago so I took a walk this afternoon with my Dad who has been visiting. Next week I am going to work 1/2 days in the morning at the office instead of in my pj's at home. When I work from home with only an occasional visit to the office it doesn't create a lot of questions. When I have gone out, there are always odd looks and raised eyebrows. I don't think the looks are offensive. Everyone is curious. I have been thinking a lot about the looks and the questions. How do I answer them? Do I answer them?
Which leads to the even more basic question of how do I describe who I am? How do I describe what I am going through? How do I describe my progress? How is the experience of having cancer changed my life?
Am I a cancer survivor? Am I still battling cancer? Am I cancer free? The one thing I know is that I am a mix of emotions. Or perhaps a mess of emotions is a better way to put it. I have been so deep in battle with being sick, I haven't processed this yet. When my mind drifts to those thoughts I push them away and tell myself to just hang on. I try to work on getting through feeling sick. I concentrate on eating right for today. Then I try and rest and get enough sleep.
But I know that soon enough I have to tackle the tough questions.
Monday, March 29, 2010
Locks of Love
This is my beautiful friend, Robin. I've mentioned her family before in a blog posting I wrote about getting ready for surgery. "Centered" Dinner with her family and another family from our old block was instrumental for my mental health! Robin is smart and able to joyously laugh at differences. She finds differences interesting and is willing to look and it seems to me say, "all right, it is enjoyable that we are different." People who can do that and mean it with a sense of joy are amazing. We taught Sunday School together for a few years. I was always the one with the detailed lesson plan. She was always the one going with the flow of the kids. Add in Bill, a great Dad, and we were a good team. An architect, Robin has found work that is of value to herself and the community and does it on schedule that works for her family and her kids.
Robin showed up right after my surgery. She brought me scarves. She went with me on the scary trip to buy eyebrow pencils and stencils. I'd look scarier still in public right now if I didn't have those. Robin emails me and reminds me that things are going to be all right. She makes life seem more normal. She helps me laugh, sometimes even about our teenagers!
And now, she has donated her hair to Locks of Love in my honor. Locks of Love is a charity that helps children who have lost their hair. Robin got a great cut from Suzie at the Mario Tricoci salon in Oak Brook. Some hairdressers have experience with how to cut for Locks of Love, Suzie does. Robin looks great with short hair!My heart is warm and I am feeling better day by day. So many friends have done so much to help keep me tied to the present. Last week, one of my (adopted) brothers joked with me that I had gone a little dark in my writing. Perhaps. It is scary here. But I feel hundreds of hands and prayers reaching out for me helping to keep me from sliding too far into the dark. Thank you.
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