Gotta keep on keepin' on.......

Cancer again...that's 3 times in 2 years. This time it’s not breast cancer, but a new one called squamous cell carcinoma. New cancer, same old fighting spirit! My blog is still named for one of many songs that kept me going the first time around. Driving home from an upsetting appointment, I turned on the radio just as this line from Steve Miller Band's Jet Airliner was playing: "I've got to keep on keepin' on" I did just that. And I'll do it again.

Saturday, February 24, 2007

how to have fun with your kids

Well, I discovered a new game to play with my children. It's called "paint eyebrows on Mommy"....

My eyebrows have been thinning these past few weeks. I'm OK with it, I guess. I might look a little strange, especially since the left one is all gone (thanks to Frances, who plucked quite a few while I napped the other day) and the right one has just the outer half still hanging on. But what can you do.....

Watching my eyebrows change these last few weeks, I wasn't overly upset. After all, I had learned how to draw on eyebrows when I attended the "Looking Good Feeling Better" class (AKA beauty class for chemo patients) back in October, 4 days after my first chemo treatment. Our instructor, Bertram, walked us through everything we needed to know about applying makeup. The idea, I suppose, is this: even if you feel lousy during treatment, you don't have to look can put on some makeup and feel a little bit pretty. (Didn't Billy Crystal's character on Saturday Night Live say something like that, "If you look good, you feel good....and you look mah-velous"???)

I took the class because it was free (through the American Cancer Society) and because I wanted to learn how to draw on eyebrows. Really! It was the eyebrows. Although I did meet some very nice women in class. And the rest of the makeup tips were interesting, especially the part about applying mascara from the very bottom of the lashes and brushing outward to avoid clumps (not exactly sure why Bertram kept looking at me and stressing the word "clumps"). Not to mention, I aced the eyeshadow lesson, applied my 3 colors so perfectly that Bertram clasped his hands to his chest as he admired my work. He even said I looked like Amanda on Sex and the City (I think it might not have been a compliment, though, isn't she the tall gawky one with wacky hair?)

After my beauty class experience, I almost looked forward to my eyebrows falling out. They hung in there through chemo, though, which thrilled and amazed my doctors. But when the old brows finally did start thinning, about 3 weeks ago, I thought I could fill them in with no problem. Unfortunately, filling in eyebrows when you HAVE them is a lot different than when you can hardly FIND them. I did draw some on, but they looked too fake, too perfect! So I've been going "au natural" with the brows and just pull my baseball cap down a little lower.

So back to our new "paint eyebrows on Mommy" game.....Emma had a blast with that tonight. She was very serious as she sketched the left one with my eyebrow pencil, but when she finished, she doubled over with laughter. I took a quick peek in the mirror and joined her. She had drawn me a very lovely "angry" eyebrow. We ran down the hall to show John, Leah, and Frances, laughing so hard we couldn't even tell them what was so funny.

This was more fun than putting temporary tattoos on my bald head! On New Year's Eve, I let the girls put one (a butterfly) on my scalp. But now that my hair is growing back, it's hard to draw on my head or apply tattoos.

So it's convenient that my eyebrows have been disappearing these last few weeks. Maybe Leah will draw me some "surprised" eyebrows tomorrow.

Sunday, February 18, 2007

where I am now.....

Well, it is 11pm Sunday night.....more than a week and a half past my surgery.....a lot has happened since then. No, I didn't get hooked on my favorite painkiller, although I did start taking it again after my last posting. I felt justified in starting it up again: I fell down the stairs Monday night and pulled muscles in both arms. (Yes, I am a total dork. I was feeling so good and was carrying way too many things without holding the railing.) Fortunately, I didn't rip any stitches or pull my drain out. But after THAT graceful move, I was in constant pain and at night could not get comfortable in any position. One night, I actually got stuck on my side....couldn't use either arm for leverage to move or roll was pretty pathetic, I must say. So I took the good stuff for 2 or 3 nights, to help me sleep flat on my back without pain.

Through all that mess, I kept myself entertained with my drain. The surgeon put a tube where my lymph nodes were, and that tube led to a drain that I had to empty every 12 hours or so. The drain was shaped like a grenade, with a little stopper on top. I just popped it open and poured it out. Simple enough. However, I had homework: I had to record the color and amount of the drainage on a little chart that I would later share with my surgeon.

I was so excited to have a project! I took it very seriously, emptied the drain regularly and measured carefully. I tried to be very descriptive with the color. At first, the liquid was "like strawberry jello", then "kind of salmon-ey", and finally "more peachy". I really wanted to use paint chips for the color descriptions (I had saved a bunch of red and pink chips from previous painting projects), but was disappointed that the liquid fell more into the orange family. Oh well.

At my post-op appointment, I finally had the drain removed. That hurt like you wouldn't believe. Now I'm just a little sore, much of my armpit is numb, and my arm is very stiff. Having your lymph nodes removed really does a number on you! I don't have a frozen shoulder, fortunately, but I don't have full mobility back yet. It is very frustrating. My surgeon's nurse sent me home with some exercises and assured me I should be close to normal in a few weeks. Here's hoping.

I also got my pathology report back at my post-op appointment, and it was a good report. The surgeon got "clear margins", doctor-talk for "I got it all out" (mainly, there was no cancer on the edges of the tissue he cut out, so it was all contained within the tissue). In the lymph nodes he removed, there were 3 nodes still positive but I DON'T have to do more chemo. That's good, because I insisted they take the port out when they did the lumpectomy. I wouldn't want to go back and have them put it in again, not to mention deal with chemo again.....

So what's next for me? Well, other than doing my arm exercises to try to regain mobility, and whining about not being able to lift baby for several weeks, I'm busy with followup appointments, eating leftover Valentine's Day candy, stuff like that.

On Tuesday, I go to see my radiation oncologist so I can get tattooed. Supposedly, all I do is climb up on the radiation machine so they can calculate exactly where on my breast and armpit the radiation needs to be directed, and then they'll tattoo little dots in all the right places. So when my radiation treatments start next week (and I'll go every weekday for 6 weeks), the technician just follows the dots. It sounds simple, but I'm sure it will be uncomfortable and painful.....just like the breast MRI they sent me to a few weeks before surgery, and like the wire localization the morning of surgery! It's all for the greater good, which is to keep the cancer from returning, so I will of course make the best of it. I'm hoping there will be a funny story to come out of it! Maybe I can talk them into tattooing a flower (or the Taz) instead of dots. I've always wanted a tattoo anyway but never had the nerve to actually do it.

So all in all, things are good. My treatment is moving along, my surgeon is pleased, my oncologist is disappointed she didn't zap all the cancer through chemo but she is definitely pleased it's all out (me too). I'll be taking a drug called Tamoxifen for the next 5 years, and will have frequent mammograms and MRIs. I'll be getting lots of attention from now on, and I'm hoping by staying on top of things I'll never have to go through this again!

Saturday, February 10, 2007

Let me tell you about my pain medicine!

I am feeling pretty OK today, still a little sore but not bad. I am trying to use my arm as instructed by the nurses, to get dressed, eat, brush my hair (I do have some now but not enough to lose the wigs). Every now and then, I'll overdo it and feel a little twinge in my armpit. But as far as pain goes, I've "graduated" to plain old Extra-Strength Tylenol as of yesterday. The pain medicine I was using before then, though....that stuff was incredible! It was Demerol laced with an anti-nausea drug (in case I was sick from the anesthesia). But for now, Tylenol does the trick.

The anesthesiologist must have given me some really good pain meds before I came out of surgery, because I felt really good almost immediately. Well, other than having a big stinging wound on my right side where the port had been removed, and feeling like there was a wad of gauze stuck under my left armpit (which I think there was). Other than that, I felt great.

I also had an oxygen tube stuck up my nostrils, and it stayed on even after they wheeled me into my room. It felt really strange, like I had glasses on and they had fallen down. I kept trying to push them up. Eventually, the nurse removed it. I think I must have been complaining about it awhile, or she grew tired of watching me tug on them, I don't know.

But back to my meds.....While I was in the hospital, every now and then a nurse would pop in and ask if I was feeling any pain. I usually was, so she'd give me some morphine. Yikes! Kind of strong, I thought, but I didn't argue. If it was keeping me from hurting, that was fine with me. Being pain-free let me focus on more important things, like when was I going to get my dinner, and why it is only clear broth and jello? (I tried to get John to sneak me some baked ziti, which I knew was on the menu at luck. He did feel sorry for me and bring me a cupcake, though. I took two bites and enjoyed it immensely)

I started refusing the morphine the next day, really wanted to move on to something that sounded less addictive. Before I left for home on Wednesday, the surgeon gave me a prescription for the Demerol/anti-nausea stuff I mentioned earlier. I figured I'd fill the prescription just in case I needed it, but planned on getting by with Tylenol. However, by Wednesday evening, I was not feeling quite so courageous. I knew I had to get used to sleeping on my back, no easy feat for this tummy sleeper! And everything hurt, even things that hadn't been operated on. So I tried one of the pills, laid back on my pillow, and did my arm exercises (to ward off lymphedema, a possible side effect of the lymph node's also called "elephant arm", if that helps you picture what it can do!). I wasn't falling asleep right away, so I sat up a little and worked on the crossword puzzle.

I have to say, doing a crossword puzzle while your pain medicine kicks in is really quite entertaining! Especially the next morning, when you take a look at the terrible job you did filling in the letters in the little boxes! But that medicine really helped me sleep. I was totally out, and nothing hurt. I can see how people can get addicted to these things. I think it was better than the morphine.

I took those wonderful pills two nights straight, and once in the afternoon when I was in a lot of pain. But no more. Honestly, I enjoyed it too much! And I tried it yesterday with just Tylenol, and felt OK. I am sore, I won't lie about it or try to be brave, but it's livable with the Tylenol.

Crossword puzzles aren't as fun these days, but what can you do!

Wednesday, February 07, 2007

Almost like going to Disney

I had to autograph my breast yesterday morning. So did my surgeon. It was the funniest thing. Once I had finished the wire localization (a whole other adventure, actually not a bad one), they wheeled me into the anesthesia room so I could meet my anesthesiologist and nurses and get the IV started.

They all quizzed me on what was going to be done in the operating room. I told them I was having the port removed on the right side, a lumpectomy on my left breast, and an axillary node dissection (lymph node removal) on the left side.

That was the right answer, and I thought I had passed the test and could go on to the OR. But no.....the nurse said, "Would you please initial the breast he'll be working on?" That was bizarre, I thought. I might have said it out loud, too, I'm not sure. The left breast, isn't it obvious? The one with all the wires sticking out? But I went along with it and scribbled my initials in blue marker. Then the nurse said the surgeon had to initial it too. I said, "Hey, it's just like being at Disney, when you get all the characters' autographs. Anyone else going to sign?" The nurses just looked at me, and while I giggled about it I did feel a little stupid....but figured they'd blame my loopiness on the "pre-surgery"sedative they'd already given me. No one else offered to sign my breast. Just my surgeon when he arrived. And he said the same thing, not the Disney comment, but about it being pretty obvious, the one with the wires, etc.

After he signed my breast, the surgeon looked at my mammograms from that morning (the wire localization, again, a really interesting experience I will write about later). He shook his head and declared, "This is astounding!", then looked at me and said, "The cancer is one-fifth its original size. I can't get over it!"

Once again, really great news. And just what I wanted to hear before my surgery. As they wheeled me into the OR I felt so relaxed and confident.....maybe it was the sedative they had already started giving me, but I tend to think it was my doctor's "astounding" declaration.

P.S. I came home from the hospital this afternoon. Feeling good tonight, a little sore, but I have some excellent pain medicine in case I need it.

Monday, February 05, 2007

pre-surgery thoughts

I have to type this quickly, before John realizes I'm still in the study and comes in to lecture me for staying up too late. I just can't sleep right now. I finally did get my bag packed, with all sorts of things I might need should I stay overnight: pajamas, zipup sweatshirt, a book I haven't been able to get through (thought it would come in handy in case I can't sleep), crossword puzzles, fuzzy socks....oh, and makeup too, because it never hurts to throw a little blush on, even when you're feeling yucky, right?

Why can't I sleep? It's not that I'm nervous about tomorrow. It's that I can't eat anything after midnight! I'm not a late night snacker, but for some reason when they tell me I can't eat after midnight....THEN I'm hungry! I don't want to make myself sick by cleaning out the fridge, so I thought I'd blog a little bit and keep busy.

I'm still very excited about tomorrow. A little bit of nervousness, though, from so many unknowns. I have heard that the wire localization they have to do first (when they xray me to find the cancer, then stick little wire guides to mark the top and bottom for the surgeon) is a little uncomfortable, and I don't know how long I'll be lying there with those wires sticking out of my chest (not to mention how big they'll be, and whether they'll stick out like TV antennae?)....That part makes me a little uneasy. But it's a necessary step and I'm sure can do it. And they'll be putting me totally under, not the twilight stuff they give for some operations that keeps you conversational, so I'm pretty confident that I won't be muttering anything embarrassing while they work on me. Unless I do that when I'm waking up.....

Well, I can see that this is not helping. I'm still thinking about food and worrying about ridiculous things. Maybe I should just head to bed. Tomorrow's a big day.

Sunday, February 04, 2007

Still hanging around

I'm still here, just waiting around for surgery on Tuesday. I feel good, not too tired (other than the usual mommy-tiredness).

Several friends have asked me if I'm nervous about my surgery. My answer is "not really". I'm a little nervous about the anesthesia, but more excited that the last of the cancer will be taken out. Originally I wanted to have surgery before chemo, but all the research I did, plus conversations with my surgeon and oncologist, convinced me that chemo first was the best route. At the time, I had a suspiciously swollen lymph node in my armpit, and while the lump in my breast was small enough to keep me in an early "Stage II" diagnosis, it was big enough to probably require reconstruction. The doctors hoped the chemo would shrink the tumor enough so that I'd only need a lumpectomy. And, with the suspicious lymph node, they were afraid the cancer may have gone elsewhere. They encouraged a systemic treatment (treating the whole system, or body, with chemo.....just in case).

So chemo before surgery made the most sense. I wasn't happy about it at first, really wanted to hop up on the operating table, but I'm glad I went the route I did. As far as we can tell, chemo has done its job. The lump is now so small the surgeon can't get a good measurement on it, even with an ultrasound. And no one has been able to locate the once-huge lymph node in my armpit (though we know it is still there since it showed up on the MRI 2 weeks ago, but significantly smaller, YAY).

Tuesday morning, around 10am, the surgeon will be removing the lump in my breast, the first two levels of axillary (armpit) lymph nodes, AND my port.

I'm ready to go on Tuesday. Well, I don't have my bag packed in case I have to stay (the surgeon said I'll be there overnight, the nurse said probably not). And I'm not sure I know where my favorite flannel snowman PJs got to. They might be in the laundry. And the house isn't quite ready for the cleaning service, which comes on Wednesday (yes, we have to pick up the clutter so they can clean. It's ridiculous, but I know other people do it too....)

But mentally, I'm ready to go!