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.

Wednesday, November 28, 2007

OK, can I heal now?

I saw Roz at my surgeon's office yesterday, and she took the steri-strips off from my touchup surgery. My skin is healing beautifully, she said. And my scar looks great, for a scar.

Roz (the nurse) is not my doctor's nurse. Virginia is his nurse. But whenever I've had stuff removed post-surgery....drains, staples, whatever....Roz is the one who sees me. No wait, that's not entirely true. Virginia removed the drains after my lumpectomy in February. Roz removed the drains and staples after my mastectomies in September. They're both really nice women, but Roz is a lot gentler than Virginia.

Thanks to Virginia, I spent most of my post-mastectomy time dreading having the drains removed. When Virginia took the drain out in February, she yanked and it hurt like you wouldn't believe. I remember that pain better than childbirth. I had only 1 drain in February, but 3 in September!

So in September, while I lay in my hospital bed with not much to do, and later at home whenever I had a quiet moment, I remembered that awful yanking and prayed that the drains would fall out on their own....painlessly, of course, and preferably while I was sleeping.

Fortunately, I saw Roz for my post-mastectomy visit and she talked me through some visualization while she eased the drains out. I felt a wee bit ridiculous, talking with her about my "happy place" (in the garden), but I felt no discomfort from the drain removal process. All 3 of them!

Same thing on Tuesday when Roz took the steri-strips off. I was afraid my skin was going to go with it, but as she peeled them off my skin remained. In fact, I didn't even know she was going to take them off. We were just talking and--boom--they were gone.

Amazing what a difference a calm, gentle personality makes!

And the best part of the visit: my pathology report showed no residual cancer! Just a well-healed scar and some normal tissue. That was a big relief. (The recurrence was on my lumpectomy scar, and the whole reason for this touchup surgery was so the surgeon could get a wider margin around the first scar. When he did the mastectomy on the left side, he was afraid my recently-radiated skin couldn't take a wide excision, so he took the minimum to get the cancer and see how the skin took to the stretching. He told me at my post-op visit back in October that he'd feel better taking a bigger chunk around the mastectomy scar, once he was certain my skin had enough elasticity. That's why we waited until November for the touchup. Sorry if this is too much information!)

I also learned on Tuesday that I can't lift Jesse for another week. He's almost 35 pounds now, and at 19 months he is definitely a mama's boy so he's not too thrilled about Mommy not lifting him. But he's big enough to climb up into his highchair, with a little boost. And I can help him out of his crib without hurting either one of us, so we get by. John's working from home this week to be available when I need some muscle. Emma has helped, too, by lifting him into his crib or playpen for me.

So other than enlisting family members' help with baby, I'm back to normal: I can drive, I can shower, I can do whatever I want within reason. And I even got permission to go to my dance class (I was going anyway, I just asked out of curiosity) but only after I promised not to do any crazy arms for at least another week.

Now, for the 3rd time since February....all I have to do is heal. Hooray!

Sunday, November 25, 2007

My little dinosaur

If you stopped by for a visit these days, you'd think we had a cat. No, not because of the smell (at least I hope not!) but because of the sounds. Frances has conquered the dinosaur sound! It goes like this: "kkkkkkkkkkkkkkkk" and it sounds like a cat coughing up a hairball.

We're all allergic to cats, so believe me there's no cat here. Just Frances practicing for her next speech lesson. And while we're not a cat-friendly family, we do love that coughing-up-a-hairball sound! We've been waiting a long time to hear her say "kkkkkkkkkkkkkkkk".

Frances is our 3-year-old (she'll be 4 in February). She started speech lessons over a month ago. If you think that seems young for speech, you might be surprised that we were thinking of having her speech assessed even earlier. At 2 years, she hardly spoke a word. She understood everything, but she would not talk. Well, that's not entirely true: She would say "No", but only to tell you that she wasn't going to say whatever it is you asked her to say! Then all of a sudden, Frances started talking. So we figured the problem was that she couldn't get a word in edgewise with her chatty older sisters around. Or, as my wise mother often said, she was just waiting until she could get it right.

Now 3 years old, Frances is still a little hard to understand. She has that typical little-kid lisp. But she also says "T" instead of "K" (Did I mention her favorite book is Hello Kitty?), and "W" instead of "L". (Our Leah couldn't get her Ls either and called herself Wee-ah until she was about 4.) And she has some wacky consonant blends that even we can’t figure out. For example, when Frances says "baybing thuit" we know she means "bathing suit". And when she asks for a "fweet", she wants a treat. But when she says "pwy", we don't know if she's saying "dry" or "try" or "cry" or something else entirely. We just ask her to repeat it, or describe it, and eventually we figure it out.

Normally, Frances is good-natured about her speech, but then, we’ve always been around to interpret for others. When Frances started preschool this fall, 2 mornings a week, for the first time she was surrounded by kids and adults who weren't used to her speech...and no one around to interpret.

The first week of preschool, Frances came home and stated matter-of-factly, "My teacher doesn't understand me." I asked her what she does when that happens and she said that she says it again. That was all. She didn’t mention it after that first week.

By mid-September, the preschool teacher was telling me that Frances frequently gets frustrated in class when she is not understood. John and I agreed that maybe it was time to get Frances’ speech assessed. We didn’t want this overshadowing her preschool experience and interfering with her learning.

Frances and I met with the speech teacher at Emma's and Leah's elementary school, who said that most of Frances' pronunciation problems are normal for her age, but that some blends are so random that she was a candidate for speech therapy. We could let her grow out of it, but if her frustration was interfering with her enjoying preschool, why not give speech a try?

That next week Frances started speech lessons. They are first concentrating on correcting her T-for-K and D-for-G sounds, and she is supposed to practice making what they call the "dinosaur sound" ("kkkkkkkkkkkkkkkk", remember, the cat hacking up a hairball?)

Frances had a great first lesson ("great" meaning that she made the requested sound once and played with the toys for the rest of the session) and a terrible second one, where she literally clamped her mouth shut and refused to cooperate. The teacher gave up and brought her back to me early, and we discussed whether she was really ready for speech. We agreed to give her another week and see how things went.

That was about 10 days ago. Frances was upset and I was upset for her. Then, the day after the uncooperative speech session, the preschool teacher told me that Frances had had a major meltdown in class. Apparently her teacher told her she couldn't understand what she said, and Frances threw herself down on the floor sobbing, "No one understands my words!" When I heard this, I burst into tears, right in front of the teacher, the kids, and all of the parents dropping off their kids. My poor little girl! 3 years old and already experiencing frustration on an almost-daily basis.

Somehow, I knew, this was my fault. (It all comes back to the mother anyway, doesn’t it?) This last year has been so crazy, and I’ve been through so many physical changes (did I ever mention that for months she called me her "new Mommy"? It was after my lumpectomy in February, and my hair had started to grow back. She had just turned 3 and really thought her old mommy went into the hospital and the new mommy came out)....and we’ve had so many family members and friends in and out of the house to help out, I think poor Frances is confused. She probably can’t quite put her little finger on it, but she feels a little ignored, too. Having a sick mother takes a lot of attention away from the children and replaces it with pressure. It’s unfair.

All I could think about for days was my poor girl sobbing "No one understands my words." I’m tearing up thinking about it now. For the first time I was absolutely furious at myself for having cancer. I had been so proud that we had survived the ordeal as a normal family. Did I need to pay more attention to her? What was I doing or not doing?

So I spent some extra time with her...Mommy-Frances time...and we had a lovely afternoon at home after her ballet class (her sisters were still at their classes and baby brother was napping). Jesse woke up, and we played with him. He made a funny noise, and I commented that he sounded like a dinosaur. And would you believe, Frances responded with a "kkkkkkkkkkkkkkkk"!!! Just like that. I don’t know why she did it, but I praised her and jumped up and down and said, "Frances, you made the dinosaur sound! I knew you could do it!"

And so did she. She was just waiting until she could get it right. Frances is a dinosaur, and I couldn't be more thrilled!

Tuesday, November 20, 2007

Touch-up surgery uneventful!

Uneventful is a good thing! I'm home, taking a quick break during intermission to post on my blog. The girls are putting on a dance show tonight for us. I think they're stalling because they don't want to go to bed, but it's a good show just the same. They must have practiced all afternoon while I was sleeping off the anesthesia.

Will write more later!

Saturday, November 17, 2007

What do you think of this license plate?

John came up with this idea for a personalized license plate for my van. In Virginia, vanity plates are very inexpensive. So everyone has one. I used to scoff at vanity plates, thought they were ridiculous. What if you decided to rob a bank? Your getaway car's plate would be easy to remember and they'd soon nab you.

But in the last few years, I've been thinking a custom plate would be interesting, a conversation piece. I've been playing with various combinations, like GDSPEELR ("good speller", get it?) or IIOFBLU ("eyes of blue", a song I made up that I sing to the kids. They all have John's blue eyes) Since my breast cancer diagnosis last year, I've been playing with other themes, like GOTTIT or GOTIT, (GOT IT was taken, and I like the multiple interpretations). But then John came up with 2LSTTS, which I think is brilliant!

The down side is I'd have to think of a clean, alternate interpretation for my kids. They don't want to know Mommy has 2 less you-know-whats! Maybe "2 lost teeth"? I wonder if they'd fall for that. And even more, I wonder if the neighbors would laugh or think I'm a nut job? Hmmm...

P.S. I've reserved the personalization for 90 days, so if you live in Virginia you can't steal my idea! I mean, John's idea.

Tuesday, November 13, 2007

Let's get up to date

I've been so busy writing about other things that I haven't posted anything about my status. Don't worry, I'm fine!

My scars look fantastic, to quote my surgeon. He is very pleased with how they're healing.

I have my mobility back: My arms move as well as they did before this surgery. I can even do those wacky windmill arms Miss Kim has us doing in our Thursday night jazz class! My left arm doesn't quite make it to vertical (leftover from having my lymph nodes removed in February), but it's close enough, and there's enough space between us dancers that I don't worry about whacking the girl to my left in the head (unless she's the one who squeezed me out of my spot at the end in our June, I'm kidding. I don't carry grudges. But she did squeeze me out!)

I have my energy back, for the most part. No more falling asleep while sitting up! I'm back to being mother-of-4 tired, not post-surgery tired. That's a big milestone. I still need an occasional nap, I won't lie about that, but I'm feeling great most of the time.

I've met with 3 of my important doctors:
1) Last week, my gynecologist checked my oopharectomy scars, talked a bit about the menopausal process (this could last years), and gave me the go-ahead for everyday activities. A good thing, because I've been walking and lifting baby for weeks now.

2) Yesterday morning, John and I met with my oncologist. She wanted to see how I was doing after a month on Femara. I'm doing well with the new drug, no side effects that I've noticed. There are hot flashes, but that could be from the oopharectomy. My body is really noticing that the ovaries are AWOL.

We talked a little bit about how we'll ever really know if Femara is working. I don't think Tamoxifen worked for me, and one of the hints was the absence of side effects (mainly, no hot flashes). So, although I do have the hot flashes, I don't feel anything else out of the ordinary. So how do I know maybe the Femara isn't working?

We also talked about my checkup schedule. Looks like checkups and bloodwork every 3 months, with some sort of mammogram/scan every 6 months to a year. As for checking to see if the cancer is really "all gone", I was disappointed to learn there is no standard "feel-good, follow-up" scan after surgery. If I have a problem, such as bone pain, a headache that won't go away, chest pain, etc., then they'd order a test accordingly.

But my oncologist is very understanding. I reminded her that earlier this year, everyone told me I was cancer-free. No MRI or scan confirmed it, just a pathology report, completion of radiation, and one tumor-marker blood test. And after my doctors assured me I was fine, within 3 months I ended up with cancer again!

So she understood why I wanted proof this time. We'll talk at my next checkup about a scan, maybe a PET scan.

3) Yesterday afternoon, I met with my surgeon. He has seen me twice since my Sept 25th mastectomies, and is so pleased with how my skin is healing. Even the sickly-looking radiated side. During the previous checkup I complained that my skin looks like it has adhered right to the bone. He suggested I massage that side, with horizontal movements, to help give the skin some elasticity. Well, it worked! It's not cover model material, but it's looking healthier.

The point of yesterday's checkup was to discuss next week's "touchup" surgery. I don't think I mentioned this before. During the mastectomy, my surgeon was afraid to take too much skin. Remember, the skin on that side is still pretty tender/sickly-looking from radiation. So he took what he felt comfortable with, so as not to stretch the skin too much and risk it breaking. Now that it's healing so well, and has regained some elasticity, he'll go in next week and take a little more skin and cinch it together more. Sounds gross, I know.

This next surgery will be done with a local anesthesia, yikes! I did request a valium or something for that morning. He'll have an anesthesiologist on hand in case I need some twilight stuff. I have a feeling I will. I can be brave: I've had multiple moles removed with just a local, I've had all 8 fillings (plus 2 refillings) with no novocaine, and I love to remind everyone that I birthed 2 of my 4 babies with no drugs (even though it wasn't my choice). BUT....I'm a little anxious about this one. Go figure!

So that about wraps up where I am. I'm healthy, energetic, and loving how things are getting back to normal. Just need a little touchup and I'll be done! Until reconstruction, that is....but that can wait until next year.

P.S. Tuesday November 20th is when I go in for my touchup. It will be an outpatient surgery, so I'm told. Aside from being a little uncomfortable for a few days, supposedly I can resume lifting Jesse and other activities.

Sunday, November 11, 2007

How to traumatize your 3-year-old

Frances saw my breasts the other day. Or should I say she saw "the site formerly known as Katie's breasts"?

I had just gotten out of the shower and wrapped a towel around my chest, when I heard the phone ring. I picked up the phone, which I had conveniently left on the sink (forgot to hang it up as usual), and started talking with my friend Kim.

Since I'm big on multitasking, and since my hair will stick out in all sorts of directions if I don't brush it down right away, I began working on my post-shower routine as I talked with Kim. I briefly worked on my hair, then went out to my dresser to grab some clothes when my towel fell off. (Not surprising, since there's nothing there to hold it up anyway!)

Normally the towel falling off wouldn't be a big deal, but at that same exact moment, my bedroom door rattled and in charged Frances, looking for her "pink piddy". But before she could even get a word in, I covered my chest with my hands and yelled "Frances, NO! Get out of Mommy's room" or something along those lines.

Poor girl was so shocked, not at what she saw because fortunately she is only 3 and didn't really know what she was looking at. Frances was more upset that Mommy was telling her to get out, which meant Mommy couldn't help her look for her "pink piddy" (which turned out to be the pink pig Pez dispenser she got for Halloween. Frances has some interesting consonant substitutions that make her hard to understand sometimes. One of her more amusing substitutions is when she says "t" for "k"....and poor thing, her favorite book is "Hello Kitty". And yes, we just started her with speech lessons, and no, we never ever laugh at her speech, nor do we allow her sisters to tease her.)

Anyway, back to poor Frances getting kicked out of Mommy's room: After I yelled at Frances to get out of my room, and as she lay crying outside my door, I realized Kim was still on the phone and that in addition to yelling at my 3-year-old I had also yelled right into my friend's ear! And if that wasn't bad enough to have a friend overhear me yelling at my child and to have possibly caused same friend irreparable hearing loss, I made matters worse by trying to explain what had happened. "Oh no, Frances just walked in on me and I just panicked. I'm standing here buck-naked and who knows what she saw!" Then realizing this was more than I needed to share, I said "Um, sorry for that visual!" and changed the subject.

Embarrassment on many levels for me! I think maybe it's time I get fitted for some fake boobs, I guess they're called "prosthetics", something I've been putting off. (I doubt I'll be starting reconstruction until late spring.) I also need to remember to lock my door when I take a shower.

In the meantime, I need to stop answering the phone until I'm fully dressed.

Monday, November 05, 2007

I'm halfway there, I bought the shoes!

Ever since my sister ran that marathon, I have been thinking about goals. I'm so proud of my little sister for setting a goal and going for it. She's inspired me to look at my life and see if there's a goal I can set, too. (I can guarantee it won't be a 26.2-mile marathon!)

When I started chemo last year, and continued on through surgery and radiation, and then again with this last surgery, so many people said to me, "Oh you're amazing" and "You're inspiring", etc. (I'm not bragging, I'm making a point with this!) While I appreciated the compliment, my answer was always, "Thanks, but I don't feel that amazing" (or "inspiring" or whatever adjective they used). Because I really don't. With cancer, you do what you need to do to get through it. I chose to get through it with as many smiles and jokes and bits of normal life as I could. That made it easier for me.

So this cancer thing, or rather enduring the treatment for this cancer thing, that wasn't a goal I set and met. It was something I had to (and knew I could) do. It doesn't count as a goal. I want to set a real goal for myself. Something that will challenge me. And since I need to work some bone-strengthening exercise into my life (remember: no ovaries, family history of osteoperosis), I've been thinking it will be to run, not walk, this next Race for the Cure.

Have I mentioned that I'm not a runner? I've done one 5K in my life: I was 22 and looked great in my spandex running shorts, and there were cute guys on my team, so it didn't matter to me that I walked most of it and ran only a bit of it. I was big on aerobics through most of my 20s and 30s, but never got into running.

So this weekend, I bought myself some very cool and expensive running sneakers. (I actually had to buy a size 10-1/2, but that's another story. I won't bore you with my flipper feet, not today.)

These great running sneakers are my incentive to work on this new goal. I can't wear them until I'm really doing some running. I've been walking at least every other morning for over a week now. Today I even ran a bit. (OK, OK, I confess! It was all of 15 seconds, from our next-door neighbor's mailbox and across our lawn. I wanted to catch John as he backed out of the driveway....had to steal a smooch before he left for work! But still, there was some running going on!)

I've got 30 days to make something of this goal. I know the Race for the Cure isn't until May, but the shoe store only gives me 30 days for returns. Guess I need to pick up the pace a bit and work some running into my walk, so I can keep my cool new running sneaks.

It does feel good to have a goal. Thanks, Susie, for being so inspiring!