Quick update before my thought for the day: I'm feeling a little better every day. The red burn is fading and turning to brown, which I suspect will all peel, but new skin is growing underneath so it won't be so painful as when I was getting blasted every day. Under my arm is MUCH more comfortable, and it doesn't hurt to move my arm anymore. My energy is returning; I went to tango on Sunday (danced two tandas, which is a total of six songs) and walked 1.7 miles this morning and didn't feel exhausted after. However, it's hit and miss--last night we went shopping at three different stores, and I was wiped out. I'm enjoying learning piano, and my first tap class is tonight. I'll probably go back to teaching pretty soon, although I'll keep my schedule light for a while.
Throughout this whole ordeal, people have commented on my positive attitude. I thought I'd talk about that a bit today. Several people said it's been shown that people tend to have a better outcome if they have a positive attitude. I don't want to get into whether positive thinking can actually cure you, because that's a huge, controversial subject and one I'm not qualified to discuss. But I can talk about how it affects me.
When I am miserable for whatever reason--I'm running 20 miles in the heat, I'm sick, I'm at a party where I don't want to be, etc., my attitude may not affect the actual situation, but it absolutely changes how I feel about the situation. If I stew in my feelings of misery, telling myself how awful things are, I am unhappy. It's like a negativity spiral: I'm in a bad situation, so I think about how bad it is, so I feel bad about being there, and that causes more bad things to happen. By contrast, if I resolve to make the best of it and look for reasons to be happy, I feel happy. Maybe that happiness then causes good things to happen, so now it's a positivity spiral. The situation didn't change, but at least I'm happy while I'm in it.
One of my favorite examples of this is when I was training for the marathon I did in 2014. About a month before the big event, I did a 20 mile race. So, first of all, that was the longest I'd ever run, so it was already a challenge. I didn't prepare well for it as far as hydrating, fueling, and getting enough sleep for the few days before (in fact I ate really awful food the day before, including jalapeno poppers), so I wasn't in a good position going into it. Finally, it was in early November and we'd had several weeks of cool weather and I had acclimated to that. Yet, on race day, it was quite warm which made things uncomfortable. So it was not an ideal race. Around mile 11, I started to feel nauseous. It might have been because I ate an un-tried flavor of energy gel, or maybe all the factors I listed above, but in any case I wasn't feeling too well. I started feeling sorry for myself, telling myself how this was too hard, and maybe I couldn't do it, and how miserable was I? Things just kept getting worse, I kept feeling more and more sorry for myself, and it was overall a miserable, miserable experience.
Flash forward to the marathon, which of course is 26.2 miles so quite a bit further. For the week before, I was resolved to not repeat the experience above. I prepared my body better, but perhaps just as (or more?) importantly, I prepared my mind. I actually visualized myself running the race, talking myself out of negative thoughts. It's too hard! No it isn't, you trained for this. I hate this! No you don't, you're doing something you never thought you could do. I'm miserable! No you're not, you're fine. Get over it. I practiced that over and over, and on race day, that's exactly what happened. I'd start to have a negative thought, and I'd replace it with a positive one. And although I was damned tired and in pain by the end, I was never miserable. I was never unhappy. I never pictured lying down by the side of the course and waiting for the sweepers to come get me. Although the race was harder because it had more hills and was longer, I had a much more positive experience.
Having cancer sucked. Hard. Doing the treatments was terrible. There was no way around that. And on those days when I was really feeling sorry for myself and reveling in just how badly I felt, I was unhappy. But if I could break myself out of it--sometimes by posting here and typing the positive words and forcing myself to get in the right mindset--I actually felt physically better. More importantly, I was happy even though my body felt terrible. When I got to the radiation phase and had run out of the willpower to stay positive, I spent a lot of time being unhappy.
Some studies suggest that when you think positively, your brain produces chemicals that support your immune system, while being depressed makes you more susceptible to problems. Whether you believe that to be the case or not, the bottom line is: you can be sick and happy, or you can be sick and unhappy. Why be unhappy? When you look for reasons to be sad or offended or angry, you spend a lot of time being sad or offended or angry. When you look for reasons to laugh or smile, you spend a lot of time laughing and smiling. How do you want to spend your time?
For me, life is too short to be unhappy. I choose to laugh and smile.
Tuesday, March 15, 2016
Thursday, March 10, 2016
I'm done, but it's not over
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| The Awareness Bear, my Radiation Complete trophy, and my cancer memory jar. It has the shredded chemo countdown loops and Dove chocolate wrappers and gratitude lanterns from radiation. |
So what now? Even though I'm done with treatment and in remission, it's really not over. I'll have follow-up visits with all my doctors for months for months if not years, next week I'll see if the lady at the Hanger Clinic managed to order the right prosthetic (who wants to take my bet that she didn't?), and I'll have my annual mammogram in June.
Then there will always be that niggling doubt. What's that weird pain? Is the cancer back? What does my mammogram say? Do I have cancer again? This is an experience that will never leave me. I refuse to live my life in fear, but it's hard to keep those doubts from trickling in from time to time. It doesn't help that I keep hearing about people who beat cancer, only to have a recurrence or new cancer a few years later that then metastasizes and they die. It's hard not to be scared of that. Today I heard about a lady who lost her fight with cancer at the age of 41. It's hard not to think, "That could have been me." So, if you have a survivor story where the cancer never came back, I sure could stand to hear some of those.
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| My hair, 19 weeks post final chemo. It's getting almost shaggy! |
It will take a long, long time to get my body back in shape. I walked a mile on Tuesday and again today, and it was a lot of work. But I have lots of motivation to get moving!
Of course, I carried some good things away from the experience. I have a whole new perspective on life and what really matters. I made some great memories as we partied our way through treatment and did all our little rituals. My friends and acquaintances showed me how awesome they are. And I learned that maybe I'm stronger than I thought. While I wouldn't wish this disease on anyone, it's good to have something positive to look back on. I certainly hope others can benefit from my experience and perspective as well.
I'll still have a few more posts to make. I never shared my "what I learned from chemo," and I'll do the same for radiation. I'm sure I'll have other things to share as well. So, we're not quite done here yet!
Friday, March 4, 2016
Time for me
Way back in July when I got my treatment plan and realized I would have to cut back on work and stop teaching dance for a while, I thought it was a great opportunity to take some time for myself, work on my books, take the college class I'd signed up for, etc. But I was sorely mistaken. As many of you know who have followed my journey, I spent a lot of the past eight months in bed being lethargic or in pain. When I was able to get on the computer, I had to spend most of that time catching up on the remaining work I had because I was always behind. If I was lucky, I had time for a blog post. I certainly didn't have time for working on the books, and I dropped the college class because there was just no way. And keep up on my exercise? psht!
Although I've had all this time off, and it was all me, me, me as I shared my tales of woe, I feel like none of it was really "me time." I didn't get to do much of anything I wanted to do with that time. Well, other than movies and eating out and visiting with friends and stuff, but I didn't get to accomplish anything I wanted to (beating cancer doesn't count. That wasn't part of my life plan.) Nearly a year of my life, just gone. POOF! So now, as treatment comes to an end, I get to take some time for ME.
If there's a positive that comes from this, it's that I feel like I have a second chance at having the life I want, cliche though that might be. Of course, having Michael's support is a huge part of what makes that possible. But for the first time in my life, I not only get to decide what I want to do with myself since I don't need to work 60 hours a week anymore, I also have the benefit of appreciating that it's now or never.
It occurred to me the other night that I could have died from this, and if I had, what did I accomplish with my life? Not enough. Not nearly enough. There have been so many things I wanted to do over the years, and I never got around to it. I didn't have the time, or the money, or didn't think I could do it, or whatever. I look at elderly people at the end of their lives, and I wonder if they wish they'd done more. I think of my fellow warriors who lost their battle, and I wonder if they were satisfied with their life. I think it's so sad when you get to the end and you just don't have any more chances to get out and live and learn and enjoy. As far as I know, we only get one trip on earth. I intend to make the next 40 years or so good ones!
One thing I've wanted to do my whole life was learn to play piano, so I recently started doing just that. I'm also working on singing again, something I'd started a couple years ago and dropped. I'm going to expand my dance horizons, starting with a tap class in a week or two. I'm going to get my third book published--it's in the editing stage right now. I'll also be converting this blog to a book eventually. Oh, and of course I have a marathon to train for. There will be more, but I don't want to get too far ahead of myself!
Of course, my new life doesn't start on Tuesday just because I'm done with treatment. I need time to adjust. I've spent 8 months fighting, and there's likely to be an emotional let down when it's done. I need time to process that, as well as to heal. The whole right side of my chest is dark red, even purple in spots. The patch of raw skin under my arm is starting to heal, thank God, but it's still very uncomfortable. It will take a long time to reclaim my body, so I'll take it in baby steps. I'll keep my work load light so I can take the time I need, as well as finish up a couple projects I'm embarrassingly late on. And then? Well, I'll let Timbuk 3 say it for me...
Oh, and then there's the party! Come celebrate with me!
Although I've had all this time off, and it was all me, me, me as I shared my tales of woe, I feel like none of it was really "me time." I didn't get to do much of anything I wanted to do with that time. Well, other than movies and eating out and visiting with friends and stuff, but I didn't get to accomplish anything I wanted to (beating cancer doesn't count. That wasn't part of my life plan.) Nearly a year of my life, just gone. POOF! So now, as treatment comes to an end, I get to take some time for ME.
If there's a positive that comes from this, it's that I feel like I have a second chance at having the life I want, cliche though that might be. Of course, having Michael's support is a huge part of what makes that possible. But for the first time in my life, I not only get to decide what I want to do with myself since I don't need to work 60 hours a week anymore, I also have the benefit of appreciating that it's now or never.
It occurred to me the other night that I could have died from this, and if I had, what did I accomplish with my life? Not enough. Not nearly enough. There have been so many things I wanted to do over the years, and I never got around to it. I didn't have the time, or the money, or didn't think I could do it, or whatever. I look at elderly people at the end of their lives, and I wonder if they wish they'd done more. I think of my fellow warriors who lost their battle, and I wonder if they were satisfied with their life. I think it's so sad when you get to the end and you just don't have any more chances to get out and live and learn and enjoy. As far as I know, we only get one trip on earth. I intend to make the next 40 years or so good ones!
One thing I've wanted to do my whole life was learn to play piano, so I recently started doing just that. I'm also working on singing again, something I'd started a couple years ago and dropped. I'm going to expand my dance horizons, starting with a tap class in a week or two. I'm going to get my third book published--it's in the editing stage right now. I'll also be converting this blog to a book eventually. Oh, and of course I have a marathon to train for. There will be more, but I don't want to get too far ahead of myself!
Of course, my new life doesn't start on Tuesday just because I'm done with treatment. I need time to adjust. I've spent 8 months fighting, and there's likely to be an emotional let down when it's done. I need time to process that, as well as to heal. The whole right side of my chest is dark red, even purple in spots. The patch of raw skin under my arm is starting to heal, thank God, but it's still very uncomfortable. It will take a long time to reclaim my body, so I'll take it in baby steps. I'll keep my work load light so I can take the time I need, as well as finish up a couple projects I'm embarrassingly late on. And then? Well, I'll let Timbuk 3 say it for me...
Oh, and then there's the party! Come celebrate with me!
Tuesday, March 1, 2016
Boost me, baby!
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| 18 weeks post final chemo |
I'm going to keep this brief (famous last words), because typing is pretty uncomfortable at this point. Today I had the first of five "boosts," where they target just the area with the highest risk of recurrence, which is the tumor bed. It's right around my incision site, where there's not much feeling, so if I get even crispier or blister I won't really feel it. These treatments are much shorter: just two zaps instead of the four or five I had before, so it's less time on the table with my arms uncomfortably over my head.
Under my arm it's like a piece of raw meat. If I can hold still, it's ok. If I move my arm, it can be downright excruciating. Yes, I am aware they make aloe and a variety of other creams, and I use several. None of them actually stop you from burning, they just make it more bearable. Except the raw skin burns when I put anything on it, so the nurse said to leave it alone until it scabs over. Try to keep my arm up so nothing is touching it and air can get to it. That's basically all I can do until it heals. Thankfully, that area is no longer being irradiated, so it can start healing now, but it will take at least a week and may get worse yet before it gets better.
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| I like my meat rare, but this is ridiculous! |
My hair continues to grow, and I had to buy a hairbrush. It's reaching an awkward in-between length where it might need some shaping or styling soon. I'm not sure what to do with it. However, I'm enjoying watching it come in!
Just four more of these shorter treatments, and I'm done! FOUR. That's cake, right? Still trying to decide what I want to do for a party...
Wednesday, February 24, 2016
Who do you surround yourself with?
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| My hair, week 17 PFC. It will lie down nicely now with no product in it. Also, I got my eyebrows done! |
I've often said that this journey has been made easier because of the people in my life. Michael taking great care of me and the kids pitching in, various friends who visited, came to my hair funeral, drove me to appointments, chatted with me when I was lonely, or even just hit the "like" button on my posts. I have received so much support through all this, I had no choice but to face it all like a warrior.
I hear horror stories in my support groups about cancer patients whose partners/family/friends abandoned them. It makes me sad for them, but it reminds me to be grateful for what I have. I'm lucky to have grown up in an awesome family who love me and support me no matter what I do. I'm continually amazed at the encouragement I get from not only friends, but people I've never even met.
I also don't have toxic people in my life. People who make me feel bad about myself and my choices. People who don't support me. I don't expect everyone to run over here and make me breakfast or drive me to a doctor's appointment--in fact, there have been some people I hardly heard from after I announced my diagnosis, and that's OK. They couldn't deal with it or didn't know what to say, or it didn't occur to them to reach out, or whatever. I don't mind. The important thing is, I didn't have one single person tell me I got cancer because I'm a bad person, or that I deserved it, or that my treatments are all wrong, or complain that I'm not being a good friend or pulling my weight or doing enough for someone else, or a whole host of other ridiculous things I hear about from other people.
I'm blessed to have some exceptional friends, who are generous with their time and love. They are amazing and a role model to me!
I'll say it again: life is too short to be unhappy. Live joyfully, and don't keep toxic people in your life. They don't deserve you. If someone makes you unhappy or frustrated every time you talk to them, cut them off. You'll thank yourself!
I am constantly humbled by how good you all are to me. I fear I don't deserve it, but I'll take it and be grateful. If you need me, and I'm too self-involved to notice, please tell me and I'll be there for you if I can. I'm just kind of a dolt sometimes and forget to think about others, but this experience is teaching me to be a better friend.
Monday, February 22, 2016
Up, down, up, down
Have I mentioned this disease is a roller coaster? A couple weeks ago, I realized I only had 30 treatments scheduled, rather than the 33 I had pessimistically assumed. I was so happy. Then this last Friday, I happened to look at the patient website and saw I had a bunch of appointments added...the RO apparently decided to give me the 28 whole breast and 5 treatments after all, for a total of 33. Argh! For some reason, this just hit me really hard. It's only three more, but it was enough to bump me into the next week. I just so, so, want this to be done. And I'm already so burned.
Friday night I started feeling nauseous again. This time, I managed to not throw up. The Zofran helped, and then I remembered I had the Relief Band from chemo (duh) so I put that on and that helped as well. I didn't sleep well that night and felt pretty worn out and delicate all weekend. Happily, I'm feeling better now.
By Saturday, my skin was starting to break down under my arm and it was getting pretty painful--there would be a burning sensation when I put my arm down. Applying lotion helped for a short time. I did find some undershirts that help keep skin from touching skin. We also took a soft t-shirt and cut off the bottom, then cut a hole in it to put my arm through. This is soft, yet provides that barrier. It helped.
Last night we tried something that also gave me some relief: I took a bath (not toooo hot but hot enough to be comfortable), and Michael made some oatmeal water by just soaking quick-cook oats for about 15 minutes, then using a spoon to squish all the good stuff out of the oats and grind up the flakes a bit. Then we soaked a cloth (the rest of the t-shirt we cut up, actually) and laid it over my whole burn area and under my arm. The water was cool and it was very soothing. I re-soaked the cloth every 5 or 10 minutes and reapplied. It was quite soothing while I was in there, so we will probably do that every night until the burns subside after treatment.
The nurse looked at my skin today and gave me some Mepilex, which is made for this sort of thing. It's kind of like a bandage that you stick on the affected area. It has a mildly adhesive back, and she stuck it on under my arm to keep skin from rubbing skin. Instant relief from the burning sensation there.
So, 10 more treatments. Five whole breast, then five boosts to the tumor bed, which should actually be easier and the rest of me can start healing. I'm already making all kinds of plans, so let's get this done so I can get on with them!
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| My burn after 23 treatments. Under my arm is even redder. |
By Saturday, my skin was starting to break down under my arm and it was getting pretty painful--there would be a burning sensation when I put my arm down. Applying lotion helped for a short time. I did find some undershirts that help keep skin from touching skin. We also took a soft t-shirt and cut off the bottom, then cut a hole in it to put my arm through. This is soft, yet provides that barrier. It helped.
Last night we tried something that also gave me some relief: I took a bath (not toooo hot but hot enough to be comfortable), and Michael made some oatmeal water by just soaking quick-cook oats for about 15 minutes, then using a spoon to squish all the good stuff out of the oats and grind up the flakes a bit. Then we soaked a cloth (the rest of the t-shirt we cut up, actually) and laid it over my whole burn area and under my arm. The water was cool and it was very soothing. I re-soaked the cloth every 5 or 10 minutes and reapplied. It was quite soothing while I was in there, so we will probably do that every night until the burns subside after treatment.
The nurse looked at my skin today and gave me some Mepilex, which is made for this sort of thing. It's kind of like a bandage that you stick on the affected area. It has a mildly adhesive back, and she stuck it on under my arm to keep skin from rubbing skin. Instant relief from the burning sensation there.
So, 10 more treatments. Five whole breast, then five boosts to the tumor bed, which should actually be easier and the rest of me can start healing. I'm already making all kinds of plans, so let's get this done so I can get on with them!
Thursday, February 18, 2016
What size boob do you want?
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| My hair, 16 weeks post final chemo |
The woman who worked with me measured me for band size and had me try on a couple of bras to make sure the size was comfortable, but they didn't have any with my cup and band size to get an exact fit. I understood that since I have an unusual size, so that was fine.
She asked what kind of bras I like, and I said I usually wear something like a demi cup. She didn't know what that was. Maybe not everyone does, but if your job involves helping women pick out bras, shouldn't you have some basic knowledge of the different types? Plus, since there's some flexibility in the sizing, I had to decide whether to go with my exact band size or the next one up and she didn't have any advice in that regard which would have been nice.
Anyway, she gave me a catalog to look through, and I picked out a couple I liked that came in my size. My insurance will cover two bras per year and a prosthetic every other year, but they're pretty affordable on Amazon so it's not a big deal.
So then she looked up my size on a chart to determine the right prosthetic, and when she pulled it out it was humongous. Like a D at least, and I'm a B. She recognized that it was ridiculously big and said, "Well, we'll order a couple of sizes and see what works." I knew she had some smaller ones in stock because she showed me one at the beginning. I guess I should have suggested we look at them, but I was getting tired at that point and didn't really feel like telling her how to do her job. So we made an appointment for a month from now (they need three weeks to get in the order, but at that point I'll probably be blistered and sore and hating life) to try on what they ordered for me. I bet Michael $10 that the prosthetics she ordered will be the wrong size.
I don't know. Telling this story after the fact, it doesn't sound as bad as it felt at the time. Her manner during the whole appointment just seemed uncertain, like she didn't really know what she was doing. Yet, there were certificates on the shelf indicating she'd been doing this work for like 15 years. I wish she had been more confident and knowledgeable so she could advise me and I could feel comfortable about what I'm going to get. I'm just glad I don't have to pay for this, because if I did I'd probably be even more annoyed.
It's a good thing I'm not that hung up on appearances and am willing to walk around with one boob since it will take a while to get the prosthetic. I just walked away feeling less than confident I'll get something I'm happy with from them. We'll see, I guess.
Radiation #21 today, so only 9 left! Single digits!
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