Today was the Silicon Valley Marathon. My friend, Don, ran in it. He's done this for several years. He also runs in San Francisco and trains with a local running club. Actually, if you ask him, he plods and walks more than runs, but he sets himself a goal to finish each one, and he does.
This year while I trained for the Avon Walk, I ran into Don on one of the local running trails used by his club. Later, we talked about my walking and how much I enjoyed it and about my times. For a walker, I tend to be pretty quick. My ridiculously long legs actually do me some good here!
Just before the Avon Walk, Don suggested I think about walking the Silicon Valley Marathon. Now, I've never done a marathon and never considered the possibility that I could. But, after the Avon walk, when 39 miles was not difficult, and even in the training phase, when I walked 10, 12, and 14 miles on a Saturday while keeping up my 3-mile daily walks, the idea suddenly seemed plausible. If I could walk 26 miles on a Saturday and then another 13 the next morning with no problems, why couldn't I walk 26 with no second day walk to deal with?
So that became the plan. After the Avon Walk, I didn't give up the training, I just kept going, and started looking at registering to walk the marathon. Don was very sweet, catching me before or after church to ask how the training was going and to tell me about his marathon experiences. To backtrack a bit, the Silicon Valley Marathon does allow walkers; they start an hour earlier. This marathon is not one that the elite runners compete in, it is more a community marathon for people like Don who train regularly and work hard, but are in it more for the endurance than the speed. The perfect first marathon for me.
And everything went well, until my chest x-ray came back with the non-shadow. All through the x-ray and the CT scan and right up until the surgery, I just kept thinking that this was a setback, but I'd still be able to get ready for the marathon. I had come to see doing this as a way for me to prove to myself that despite the cancer, I was still strong and able to push myself to do something new and exciting.
After the surgery, I realized the marathon wasn't going to happen. The recovery took too long and because of the nature of Sarcoidosis, I'm not stronger after the surgery recovery; I just keep getting slowly worse. My chest is heavier, the pain is more prevalent, my breathing gets worse each week, and the cough has started. My 3-mile walks are a challenge some days, so I'm quite certain 26 is out of the question right now.
That said, I'm not giving up on the idea. Yesterday I met a neighbor whom I haven't talked to in a few weeks. She asked how things were going with the Sarcoid and I told her what I know right now. After hearing me she paused a moment and said very succinctly that 2009 just has better be a much better year for my family and me. I agree. So next year, at the 2009 Silicon Valley Marathon, my poor husband will be getting up early to get me there at 6am to start my walk. And at the end, I'll be the happiest of all the finishers.
Sunday, October 26, 2008
Friday, October 10, 2008
The chicken or the disease?
Tonight is the date for one of the annual fundraiser events for my girls' school. It is a fun event, with a great dinner, jump houses for the kids, and time to see friends outside of the daily drop-off and pick-up rush. Or so I recall.
We didn't make it last year, I was still recovering from surgery and wasn't up to a night of socializing. And we didn't go this year, either.
I spent today at the zoo chaperoning my first grader's class after spending a week in and out of the doctor's office trying to figure out how I ended up with two separate infections in the course of a few days. I'm not up to socializing tonight, and knew I wouldn't be.
But, a friend asked me today if we were going. I told her we were not planning on it and why. Later, she said it was funny that being diagnosed with something suddenly makes the symptoms seem real.
Maybe she's right. Last year, I was healthy right up to the moment the doctor told me I had cancer. And this year, I was on my way back, ready to get on with my life and to put the cancer behind me, right up to the point I was told I had to have surgery again, and then again when I was told I have an incurable auto-immune disease.
Last year, the breast cancer diagnosis made me start questioning all of my choices in life to see what I'd done to cause the cancer. Later, I realized this is a futile and destructive path to go down, so I stopped. But then, the breast cancer did make me sick, or rather, the cure, in the form of surgery and Tamoxifen, made me feel like a sick person.
This year, I am questioning every illness and syndrome and diagnosis I've ever had to try to figure out if it was or is the Sarcoidosis causing it. This week, my doctor said that the second infection was probably a result of my immune system fighting the first infection, so some of the bacteria moved along. So now I wonder, was the first infection a result of my immune system being too busy attacking my lungs and lymph nodes to notice bacteria?
And, am I too tired to socialize because the Sarcoidosis caused the infections, or because having Sarcoidosis takes up all of my energy to analyze and reconsider and rethink everything that has happened this past year? At least the latter is something I can deal with and stop after I learn more and, hopefully, learn it is futile and stop. The former is what I don't want more than anything. I don't want to feel like a sick person again.
We didn't make it last year, I was still recovering from surgery and wasn't up to a night of socializing. And we didn't go this year, either.
I spent today at the zoo chaperoning my first grader's class after spending a week in and out of the doctor's office trying to figure out how I ended up with two separate infections in the course of a few days. I'm not up to socializing tonight, and knew I wouldn't be.
But, a friend asked me today if we were going. I told her we were not planning on it and why. Later, she said it was funny that being diagnosed with something suddenly makes the symptoms seem real.
Maybe she's right. Last year, I was healthy right up to the moment the doctor told me I had cancer. And this year, I was on my way back, ready to get on with my life and to put the cancer behind me, right up to the point I was told I had to have surgery again, and then again when I was told I have an incurable auto-immune disease.
Last year, the breast cancer diagnosis made me start questioning all of my choices in life to see what I'd done to cause the cancer. Later, I realized this is a futile and destructive path to go down, so I stopped. But then, the breast cancer did make me sick, or rather, the cure, in the form of surgery and Tamoxifen, made me feel like a sick person.
This year, I am questioning every illness and syndrome and diagnosis I've ever had to try to figure out if it was or is the Sarcoidosis causing it. This week, my doctor said that the second infection was probably a result of my immune system fighting the first infection, so some of the bacteria moved along. So now I wonder, was the first infection a result of my immune system being too busy attacking my lungs and lymph nodes to notice bacteria?
And, am I too tired to socialize because the Sarcoidosis caused the infections, or because having Sarcoidosis takes up all of my energy to analyze and reconsider and rethink everything that has happened this past year? At least the latter is something I can deal with and stop after I learn more and, hopefully, learn it is futile and stop. The former is what I don't want more than anything. I don't want to feel like a sick person again.
Sunday, October 5, 2008
Why I hate October
Charitable organizations have, in recent years, discovered that setting aside a special day or month is a great way to focus peoples' attention and to raise funds. I think they all got the idea from Jerry Lewis. His Labor Day Telethon must be the single largest charitable fundraiser in the world. And, we all know when it's coming; Labor Day weekend is Telethon time.
Apparently, October is Breast Cancer time. It's nearly impossible to miss this fact. Pink ribbons are festooned everywhere, like decorations! Go to the grocery store or Target or even the mall; products suddenly have pink labels, pink balloons are displayed and giant pink ribbons are everywhere.
On one level, I get it. This month is a time to raise awareness, to remind women to get checked regularly, and to raise money. But, here's the thing. One in 8 women in the Bay Area has or has had beast cancer. We are quite aware. And, for me, it's the pink.
Pink is cute, pink is cheery, pink is little girlie and sweet cupcakes. Breast cancer is not pink. Breast cancer is devastating; it is ugly scars; it is chemo and hair loss and brittle dry skin and nails and it is fear and it is most definitely not pink.
Why is it considered ok to "decorate" for Breast Cancer Awareness month in October, but these same stores don't decorate for Prostate Cancer Awareness in September? Where are the blue ribbons everywhere? Where are the blue ribbon Craftsman Tools? If we have pink ribbon KitchenAid mixers, why not a blue ribbon tool set?
I went to the grocery store the other day. It was on my way to work and I was in a hurry and focused on getting what I needed. At the checkout, the clerk asked me, very innocently, if I wanted to donate to breast cancer research. That was the wrong question at the wrong time. I'm not proud of what followed, but it happened, and I'll bet I'm not the only survivor who has reacted this way.
When I looked up, I saw a big pink ribbon on the checkstand. I snapped. I replied that no, I wouldn't be donating today because I've given about all I can to my surgeon. And furthermore, the store should be more sensitive to the fact that 1 in 8 women in San Jose is dealing with breast cancer, and by the way, pink is a terrible color for breast cancer because breast cancer is ugly and devastating and definitely NOT pink.
I won't be going back to that store again this month.
And, just maybe, I've been under a little more stress than I thought.
Apparently, October is Breast Cancer time. It's nearly impossible to miss this fact. Pink ribbons are festooned everywhere, like decorations! Go to the grocery store or Target or even the mall; products suddenly have pink labels, pink balloons are displayed and giant pink ribbons are everywhere.
On one level, I get it. This month is a time to raise awareness, to remind women to get checked regularly, and to raise money. But, here's the thing. One in 8 women in the Bay Area has or has had beast cancer. We are quite aware. And, for me, it's the pink.
Pink is cute, pink is cheery, pink is little girlie and sweet cupcakes. Breast cancer is not pink. Breast cancer is devastating; it is ugly scars; it is chemo and hair loss and brittle dry skin and nails and it is fear and it is most definitely not pink.
Why is it considered ok to "decorate" for Breast Cancer Awareness month in October, but these same stores don't decorate for Prostate Cancer Awareness in September? Where are the blue ribbons everywhere? Where are the blue ribbon Craftsman Tools? If we have pink ribbon KitchenAid mixers, why not a blue ribbon tool set?
I went to the grocery store the other day. It was on my way to work and I was in a hurry and focused on getting what I needed. At the checkout, the clerk asked me, very innocently, if I wanted to donate to breast cancer research. That was the wrong question at the wrong time. I'm not proud of what followed, but it happened, and I'll bet I'm not the only survivor who has reacted this way.
When I looked up, I saw a big pink ribbon on the checkstand. I snapped. I replied that no, I wouldn't be donating today because I've given about all I can to my surgeon. And furthermore, the store should be more sensitive to the fact that 1 in 8 women in San Jose is dealing with breast cancer, and by the way, pink is a terrible color for breast cancer because breast cancer is ugly and devastating and definitely NOT pink.
I won't be going back to that store again this month.
And, just maybe, I've been under a little more stress than I thought.
Wednesday, October 1, 2008
More Waiting
I have amazing friends and family. Everyone has been extremely supportive and understanding as I've tried to accept the new diagnosis. At first, everyone was excited and glad that it did not turn out to be cancer, and some wondered why I wasn't happier about it. After I explained what Sarcoidosis is, they understood. This is better than having to have chemo, but it is a lifelong disease now; incurable and unpredictable. It's not something I'm going to jump up and down about.
Folks have also been wanting me to share what I know and when I'll be seen for this. Well, I still know very little. Everything I've read about Sarcoidosis emphasizes its variability. For some, it can be debilitating, for others, it can go into remission for years with no symptoms at all.
At the moment, I seem to be somewhere in the middle. I'm becoming more and more aware of the lung issue as I find myself short of breath easily and more tired than I'd like. The most frustrating thing right now is that exercise is getting more difficult each week. And those who know me are well aware of the high value I place on my treadmill!
As for treatment, I have an appointment with the rumetologist that my oncologist recommended, but not until October 30. Apparently new patient appointments are few and far between. Until then? I'll keep studying and exploring some alternative therapy options. I've already gotten a referral to a holistic doctor that does a lot with supplements and will try to get this going as soon as I can.
I'm also trying to deal with the emotional and spiritual impact this diagnosis is having on me. Last Friday I indulged in a whole day of angry. I was angry about having cancer, about not being able to tolerate the treatment so now I'm in a wait and see mode for that, about having to be cut open again, about the new diagnosis, about not knowing what to do about it, and about having to realize I'm not as healthy as I thought, and I may never get to be again. I was irrational and teary and short with everyone and had no patience for anyone or anything; all the things I dislike about anger. It was a lovely day. But then, the next day came and there were children and a husband to love and care for and refugees to see and a hair appointment to keep and a street fair to enjoy. Saturday was much better.
So maybe, I'm not just waiting, but I am daily doing what I have to do to adjust to the new normal and attempting, with more or less success, to learn to deal with it.
Hey, didn't I have a new normal last year? How often does normal get to readjust? I think I'm ready for a normal to stick around for awhile. The adjustments are no fun at all.
Folks have also been wanting me to share what I know and when I'll be seen for this. Well, I still know very little. Everything I've read about Sarcoidosis emphasizes its variability. For some, it can be debilitating, for others, it can go into remission for years with no symptoms at all.
At the moment, I seem to be somewhere in the middle. I'm becoming more and more aware of the lung issue as I find myself short of breath easily and more tired than I'd like. The most frustrating thing right now is that exercise is getting more difficult each week. And those who know me are well aware of the high value I place on my treadmill!
As for treatment, I have an appointment with the rumetologist that my oncologist recommended, but not until October 30. Apparently new patient appointments are few and far between. Until then? I'll keep studying and exploring some alternative therapy options. I've already gotten a referral to a holistic doctor that does a lot with supplements and will try to get this going as soon as I can.
I'm also trying to deal with the emotional and spiritual impact this diagnosis is having on me. Last Friday I indulged in a whole day of angry. I was angry about having cancer, about not being able to tolerate the treatment so now I'm in a wait and see mode for that, about having to be cut open again, about the new diagnosis, about not knowing what to do about it, and about having to realize I'm not as healthy as I thought, and I may never get to be again. I was irrational and teary and short with everyone and had no patience for anyone or anything; all the things I dislike about anger. It was a lovely day. But then, the next day came and there were children and a husband to love and care for and refugees to see and a hair appointment to keep and a street fair to enjoy. Saturday was much better.
So maybe, I'm not just waiting, but I am daily doing what I have to do to adjust to the new normal and attempting, with more or less success, to learn to deal with it.
Hey, didn't I have a new normal last year? How often does normal get to readjust? I think I'm ready for a normal to stick around for awhile. The adjustments are no fun at all.
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