A life changing experience

I am not writing this as a fundraising plea but to tell about a life changing experience. We all may need these sometimes.

There are breast cancer retreats, support groups, pink groups, pink girls, and I can go on and on and on. But occasionally one comes along which is a life changing experience for the participants. A good example of that is Casting for Recovery. It teaches women with breast cancer a new skill, provides psychosocial and medical support, and after a three day all expense paid weekend, have a life changing experience. Read this story about a woman in Oregon and her experience on the retreat. 

When I first heard about Casting for Recovery, I thought how cool is that. I'll have to sign up and I did. Then when I was driving to the retreat stuck in Cape traffic on an August Friday afternoon, I thought to myself: 'What am I doing? Going away for the weekend with a bunch of strangers. How did I get myself into this one?' And I came up with a plan. I was going to have gall bladder surgery a month later. I decided if it was awful, I could always fake a gall bladder attack and leave.

By the end of the weekend, I had new friends, reached a new level of acceptance with my medical history, and relearned some childhood fly fishing skills. It was a life changing experience for me.

Happiness

What is happiness in life? We don't realy know. Scientists have defined it as:

My version of it is a bit different (and I have long since forgotten all the calculus, trigonometry and higher math I learned in college) and shorter.

I think happiness is defined as contentment, meeting your own expectations and no one else's. In the scientific definition they talk about it as meeting your expectations of yourself. But do not lower your expectations. You need to set your expectations to a level that you can attain. Wow, am I getting philosophical this morning? That is too much to ask.

But I digress. What makes me happy? Well, as you may have guessed my health doesn't make me happy. Happiness for me is getting a feeling of accomplishment in what I do. Sometimes it leads me to stretch myself a bit thin with volunteer work but I like how I feel after I get something done that helps another group of people.

Sometimes I see people who clearly are not happy with their lives. Some times circumstances can be beyond our control - like getting cancer, and sometimes we need help from others - money, therapy, but we are better off if we focus on making lemonade out of our lemons than allow resentment to grow and turn us into crabby nasty people.

What are my expectations in my life? I now know I am not going to be a rocket scientist, a CEO, a Hollywood star, or cure the common cold. But I am  okay with all that. I wouldn't mind finding a cure for cancer but think there are others who are much more qualified.

What do I want out of life? I think I am happy with a little house on a little street where I can live quietly with my husband and garden. I think I am happy in our own little world here. Its only 10 minutes to the damn hospital if I need it.

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:

1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.

That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

Advice from a long, long time ago

Well back in 1981, I was told I had cancer the first time (and stop trying to figure out how old I am - I am 37 this year, I will be 37 next year, and was 37 last year.). I was the good patient. I went to see my doctors and had all the fun tests after surgery and learned to take my thyroid pills regularly (except today when I cant remember if I took it or not - most aggravating).

Then all of a sudden my doctor said 'You should be fine. Live a healthy life style, don't take risks, each right, and get plenty of sleep'. WHAT????? But I'm still in college. I don't want to live a healthy life style. I want to go to bars, dance to live music, stay out late, eat dessert for breakfast and breakfast for dinner and live on beer, coffee, and TAB (remember TAB?)

So after ruminating on this comprehensive advice for a few months, I decided that although I had been told I had cancer and would have a life of being dependent on a little bottle of pills, I was going to live my life on my terms. I wasn't necessarily going to play in traffic but I was going to do what I wanted.

I did do things like 18 months after cancer treatment, I went to Europe for six months to study. I survived that - being away from doctors and living my life as I wanted. I finished college, got a real job, started a career, and all that. I didn't implode. I had fun. And I am still here.

I may have had cancer again and my health may not be so great in a lot of ways, but I'm doing what I want for the most part and having fun. I don't think a cancer diagnosis, or two, should take all the fun out of life.

So my advice for the post cancer life is do what you want, don't play in traffic, and have fun.

Advice from a long, long time ago

Well back in 1981, I was told I had cancer the first time (and stop trying to figure out how old I am - I am 37 this year, I will be 37 next year, and was 37 last year.). I was the good patient. I went to see my doctors and had all the fun tests after surgery and learned to take my thyroid pills regularly (except today when I cant remember if I took it or not - most aggravating).

Then all of a sudden my doctor said 'You should be fine. Live a healthy life style, don't take risks, each right, and get plenty of sleep'. WHAT????? But I'm still in college. I don't want to live a healthy life style. I want to go to bars, dance to live music, stay out late, eat dessert for breakfast and breakfast for dinner and live on beer, coffee, and TAB (remember TAB?)

So after ruminating on this comprehensive advice for a few months, I decided that although I had been told I had cancer and would have a life of being dependent on a little bottle of pills, I was going to live my life on my terms. I wasn't necessarily going to play in traffic but I was going to do what I wanted.

I did do things like 18 months after cancer treatment, I went to Europe for six months to study. I survived that - being away from doctors and living my life as I wanted. I finished college, got a real job, started a career, and all that. I didn't implode. I had fun. And I am still here.

I may have had cancer again and my health may not be so great in a lot of ways, but I'm doing what I want for the most part and having fun. I don't think a cancer diagnosis, or two, should take all the fun out of life.

So my advice for the post cancer life is do what you want, don't play in traffic, and have fun.

I'm still me.

I may not be the same as I was ten years ago, five years ago, or even a year ago but I am still me.

I don't work as much as I used to. I go to the doctor more than any normal person. This year I should end up with just under 50 doctor appointments - which is down from a high of 80 or so a year.

I don't get out and do as much outside as I used to - skiing, skating, hiking, biking, roller blading and more have gone by the way side.

But I still do the things I like to do that I can. I just know they can take a lot out of me.

I feel sometimes I am the recipient of blame or finger pointing for all my health issues. Its not intentional but I know I have to control what I do so I spend fewer hours in pain recovering from what were previously normal activities. I am getting better at saying no to requests for things. I am learning to stand my ground and walk away from opportunities that would overtire me.

My husband makes dinner probably twice a week now. I also try to make something each week which can be eaten for a few nights. Going out to dinner can take more energy than I want to use.

But I'm still me. I just don't move as fast and need lots of naps.

A peek at life with cancer

It took a new study to confirm what all of us living with cancer know - its still scary years and decades later. The study said that for the first few years after a cancer diagnosis patients cope with depression but then it turns to a much longer bout with anxiety. Why you ask? Because there is no guarantee it won't come back.


This study also looked at anxiety in both patients and their caregivers. The caregivers also tend to cope with anxiety.

If you have some sort of other chronic illness such as rheumatoid arthritis or fibromyalgia or many others, patients tend to deal with it as a chronic illness. Cancer patients also deal with it as a chronic illness but its also a chronic threat because there is no way to control or prevent it from coming back or showing up with a new cancer some place else.

How pleasant.

It took this fancy research study to tell me something I know well, 32 years later, that it still looms over me. In 2005, 24 years after my first diagnosis, I had millions of uterine fibroids that resulted in a hysterectomy. I expressed my concerns to the surgeon that I had had cancer before and was concerned about more cancer. Her reply 'fibroids usually are benign but to be sure we slice and dice them to make sure' left me feeling better about it. But I had been concerned enough to ask.

In 2007 with my breast cancer diagnosis, I started the roller coaster again. But full of little tips and reminders, that because it was my second cancer at such a young age (never say that to patients please), I got extra tests and exams as a special perk.

Years of going to doctors who say things like 'with your medical history, we need to be sure', while reassuring it does reinforce the possibility of cancer looming.

So now I shouldn't worry about depression but only the anxiety and wait for a guarantee. 

Expanding my life

I have a job now where I work 15-18 hours/week. I have actually had it for what is closing in on six years. I really like my job except for one issue. The commute. 20+ miles on infamous Boston are highways with a solid selection of school buses on both ends. I have told my boss the only thing I don't really like about it is the commute so he could feel free to pick up and move the company ten miles south and I would be happier.

I used to work a second job where I worked closer to 30-35 hours/week total. After RA and fibromyalgia combined with evenings and weekends required for the second job, I had to leave it. I sometimes wonder if I found a job which was closer and flexible could I work more hours.

So periodically I take a look at local job openings. I actually applied and interviewed for one last fall which was one mile from home, walking distance for me on a good day. Then they decided they wanted someone full time instead of part time so that was that.

Yesterday I saw a job posting at a non-profit who's cause is close to my heart but its 20-30 hours/week and requires one day a week in the office downtown. I am not sure I am ready or able to commit to a new job which requires one day a week in the city and many more hours than I currently am working.

Then this morning I am more intrigued. I found another job that is 10 hours/week and looks that it is pretty remote. What if I could add a second job which is ten hours/week and has flexibility and does not require regular office time? Could I do it? Could I expand my life and my paycheck to take on another job? Sometimes I feel I spend too much time at home watching bad TV.

This requires more thought. And hope that my health will cooperate as well.

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:

1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.

That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

After cancer treatment is just as important

You get a cancer diagnosis and then they tell you how they want to slash, poison and burn your body to get rid of the cancer. But they rarely discuss the issues of life with your dismantled body after treatment.

I had no idea what I was getting into when at 19 I had my thyroid removed. I didn't understand for the rest of my life, I would need to take a little bottle of pills with me. Or that after breast cancer treatment, I would have surgery scars embossed into my skin thanks to radiation shortly after. Never mind neuropathy and chemo brain. And we can't forget our friends PTSD, anxiety, and depression, among others.

So when you are preparing for your cancer treatment, you also need to take the time to think about the long term and late effects, as they are known. These can include secondary cancers, infertility, and heart, bone and lung problems. Yeah, right. The first response to 'you have cancer' is something along the lines of 'get it out of me!'. No one wants to wait and weigh the benefits of do we get rid of the cancer or do we worry about the long term effects, if the first cancer doesn't kill you in the meantime?

That's not happening. Now that we know that patients can live and thrive for decades after treatment, perhaps we need cancer treatments which are do not leave long lasting physical scars. I know now there are oral cancer treatments where daily pills can remove the cancer but also bring strong side effects. They are a step in the right direction but we aren't there yet. Life after cancer is just as important as life before cancer. We want to be able to enjoy it too.

More research is needed please.

Happiness

What is happiness in life? We don't realy know. Scientists have defined it as:

My version of it is a bit different (and I have long since forgotten all the calculus, trigonometry and higher math I learned in college) and shorter.

I think happiness is defined as contentment, meeting your own expectations and no one else's. In the scientific definition they talk about it as meeting your expectations of yourself. But do not lower your expectations. You need to set your expectations to a level that you can attain. Wow, am I getting philosophical this morning? That is too much to ask.

But I digress. What makes me happy? Well, as you may have guessed my health doesn't make me happy. Happiness for me is getting a feeling of accomplishment in what I do. Sometimes it leads me to stretch myself a bit thin with volunteer work but I like how I feel after I get something done that helps another group of people.

Sometimes I see people who clearly are not happy with their lives. Some times circumstances can be beyond our control - like getting cancer, and sometimes we need help from others - money, therapy, but we are better off if we focus on making lemonade out of our lemons than allow resentment to grow and turn us into crabby nasty people.

What are my expectations in my life? I now know I am not going to be a rocket scientist, a CEO, a Hollywood star, or cure the common cold. But I am  okay with all that. I wouldn't mind finding a cure for cancer but think there are others who are much more qualified.

What do I want out of life? I think I am happy with a little house on a little street where I can live quietly with my husband and garden. I think I am happy in our own little world here. Its only 10 minutes to the damn hospital if I need it.

Taking back my life

Over the past few years, my life has shrunk. There are many things I can no longer do - hiking, biking, camping, skiing, vacuuming. I have decided it is time to take back my life.

I used to go for a daily walk, rarely skipping a day. A habit started years ago. I would walk in the rain and snow and heat and cold.

In the spring of 2007, I was working at a small company near home. I started walking at lunch with a co-worker once or twice a week. I left the job but kept walking weekly with her, through cancer treatment. We would walk the steep hills to keep in shape. We kept going. Some weeks would skip because one of us was traveling or busy, or my back hurt too much.


Two winters ago, she and her husband started spending two months in Utah to ski so we stopped for the time. Last winter she went for her two months in Utah, we walked once after she came back in the spring. Then my back started hurting more, and my hip (bursitis). We haven't walked since.

I have gone for a few walks since then but nothing as regular as I used to. I do go to the gym and do an hour of cardio three times a week as well as weights and stretching. But long walks result in bad effects - including hobbling home and spending a few hours or a day in bed. I find I don't have the stamina for it. My muscles aren't used to walking any more.

I am determined to start going for regular walks again. I do need a day of rest after working out. But I have a plan. A dastardly plan. My husband has no idea what he is in for.

We are going to go for a walk every weekend. We have started already. We went for a walk at a nearby wildlife refuge last weekend. And on Saturday we went for a walk in the wind and cold on the hills around our neighborhood. This coming weekend we will go for another walk.

I want to walk enough so that we can go on hikes again, something we really liked to do. One of our first dates was a hike along the edge of a cliff on western MA where we got hit by a thunderstorm and literally soaked to the skin. I would love to be able to hike like that again. It may take a while but I do want to hike again. I enjoy being out in the woods. Its part of taking back my life.

I am tired of watching things I enjoy slip away. I'm taking back my life. And maybe I'll lose some weight too.

A life changing experience

I am not writing this as a fundraising plea but to tell about a life changing experience. We all may need these sometimes.

There are breast cancer retreats, support groups, pink groups, pink girls, and I can go on and on and on. But occasionally one comes along which is a life changing experience for the participants. A good example of that is Casting for Recovery. It teaches women with breast cancer a new skill, provides psychosocial and medical support, and after a three day all expense paid weekend, have a life changing experience. Read this story about a woman in Oregon and her experience on the retreat. 

When I first heard about Casting for Recovery, I thought how cool is that. I'll have to sign up and I did. Then when I was driving to the retreat stuck in Cape traffic on an August Friday afternoon, I thought to myself: 'What am I doing? Going away for the weekend with a bunch of strangers. How did I get myself into this one?' And I came up with a plan. I was going to have gall bladder surgery a month later. I decided if it was awful, I could always fake a gall bladder attack and leave.

By the end of the weekend, I had new friends, reached a new level of acceptance with my medical history, and relearned some childhood fly fishing skills. It was a life changing experience for me.

Life Changes

As I look back on my life for the past few years, I see changes. Back in the dark ages, before that second evil cancer, I used to be a focused business person. I was the marketing manager or director for different companies and non profits. I worked full time, in downtown Boston, and I dressed up for work every day. I went to the doctor maybe 6 times a year. (I have never been the one doctor appointment a year girl).

Now I go to the doctor on the average of weekly. I have held my current part time job for almost five years where I work 18 hours each week when I can which has gotten more and more difficult. Even in the five years since I have held that job, I can see more changes. Even in the last 18 months since RA and fibromyalgia showed up, more changes.

I never thought I would be someone who sat around and watched Lifetime movies, HGTV, and even some (gasp) reality TV. I also knit/crochet, read, and surf the evil internet.

Now I carefully plan what I do to allow for downtime and rest. I look for the quality of life in the things I do. I try to help others as much as I can. I have adapted (mostly I think) successfully. But life continues to change. And it will.