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!

Boost me, baby!

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.

I like my meat rare, but this is ridiculous!

My energy level is not bad. I could actually drive myself to treatment, but we decided Michael will come with me until it's done so I have the moral support. Other than the physical discomfort, I feel OK.

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...

Who do you surround yourself with?

My hair, week 17 PFC. It will lie down nicely
now with no product in it. Also, I got my
eyebrows done!

Quick update before my philosophical thought for the day: 25 treatments down, 8 to go (3 whole breast, three "boosts" to the tumor bed only). I'm very, very red. Yes, I have all kinds of creams that are soothing. I alternate between Aquafor, 100% aloe, and a homemade salve of comfrey, lavender, and olive oil (I think) that someone gave me. They all bring temporary relief. I'm not in agony, but the patch under my arm is uncomfortable and there's some itching. There's some swearing that happens when I have to lift that arm, even with the bandage on it. However, my energy level is reasonable and I'm driving myself to appointments most days. And now for the thought for the day...

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.

Under my arm after treatment 25. This pic
doesn't do it justice and I can't seem to capture
how red it is. That darkish batch at the top
really is that dark, and the red bit
within that is broken skin. 

But, it's not only luck. I didn't just happen into this awesome circle of people. Over the years, I have culled people from my life who are a drain on me. I can't stand those who are constantly negative, always complaining about their horrible life. So, I just don't associate with those people anymore. Sure, we all have our bad days and have reasons to complain. I certainly have complained plenty in the past few months. And if you're having a bad time and need to vent your frustrations, I hope I'm as good a friend to you as you have been to me. I'm not talking about that. I'm talking about the people who never have anything positive to say. Who take the pessimistic view on everything that happens. Who tell you how many people they know have died from the disease you're currently fighting. Life is just too short to live like that.

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.

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.

My burn after 23 treatments. Under my arm is even redder.

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!

What size boob do you want?

My hair, 16 weeks post final chemo

Thankfully, I'm doing pretty well now. I'm not as fatigued and am back to driving myself to treatments, although yesterday Michael went with me because I had my appointment at Hanger Clinic to get fitted for a mastectomy bra and prosthetic. I was kind of excited about it, but left feeling annoyed and pessimistic. The story gets a little personal because of the subject matter, so if you're uncomfortable reading about bras, stop reading. 

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!

Over halfway!

I was looking forward to getting through treatment today, because #17 would put me over the halfway mark. Then, last night when I was lying awake not sleeping after an evening of throwing up and generally feeling lousy (not really sure why), I was counting days and realized that my end date, March 2, is only about 2.5 weeks away, or 14 treatment days including today.

When I first met with my radiation oncologist back in October, he said I'd have 30-33 treatments and that he'd make sure I blistered in order to make sure the skin is good and cooked. Pessimistically, I said, "So, 33?" and he nodded. So, I've been assuming I'd have 33 treatments all along. But last night I realized I'm only scheduled for 30. And when he examined me yesterday, he said with my fair skin I'm burning so fast he sees no reason why he should have to extend my treatment, because I should blister with no problem. Yay? Anyway, so that means I only have 30 treatments. The end date is the same as I already knew it was (unless I have to take a break to let my skin heal), but the difference is that now I realize I passed the halfway mark on Wednesday. And I only have 13 treatments left! That's not so bad, is it?

So I'm feeling better today, although my stomach is still a little delicate so I'm still taking anti-nausea meds. The general crappy feeling is definitely improved. But, I'm still exhausted. I'm exhausted every day. So, I'm going to wrap this up and see if I can take a nap.

Have a good weekend, and Happy Valentine's Day!

So tired

Hair week 14!

This radiation thing is really for the birds. People say it's the "easiest" of the treatments, but I think there's a pretty negligible difference in how much this sucks vs how much chemo and surgery suck. Basically, they all suck. While this isn't as debilitating as chemo, it's every day and there's no break. With chemo, I'd have a really awful week, but then I'd have a pretty good week. Now, I'm exhausted every day. Even on the weekends when I don't have treatment, I'm only marginally better than the weekdays. Plus, driving downtown every day just sucks.

I'm tired. Once again, it's a struggle just to get on my computer and try to get anything done. Mostly. I lie here and play on my tablet or watch TV. I want to sleep, but I generally can't.

Sunday night, we were playing games with friends and at one point I was laughing and suddenly felt lightheaded and thought I might pass out. We called it a night a little while after, and I had a mild headache and felt weak. We determined I must have been dehydrated, because radiation can have that effect on you. So, I'm trying to make sure I get plenty of liquids and protein. Michael ended up working from home yesterday so he could take me to treatment, and he drove me today as well. We'll just have to take each day as it comes and figure out what I can and can't do. Some people only struggle with their energy level the first week or so, so maybe it'll get better. So far, the burn is not bad. Some pinkness and freckling and it's mildly tender.

Emotionally, I'm OK. Frustrated, but OK. I'm back to feeling helpless again, and I hate hate hate that. Annoyed that I may not get to do much of anything for the next four weeks or more. Counting down the days--nine down, 24 to go!