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.

Thursday, November 30, 2006

OK math majors, how much time do I save?

I guess I don't have enough to do. Or I'm easily entertained (I know that's true). I just timed myself, to see how long it takes me to get my wig on. Since I posted that bit about the average woman spending an average of 41 minutes each day on her hair, I have been wondering how much time I'll save during this time in my life.

So it took me approximately 2 minutes and 30 seconds to put Delores on and be ready for the day. That includes:
15 seconds to locate Delores, the hat, and a scrunchie
45 seconds to put her on, adjust the bangs/side pieces, and tie the ponytail
10 seconds to put the hat on and pull the ponytail through the back
65 seconds to look at it, then take it all off and put it back on, since I wasn't happy with a stray piece sticking out. (That includes about 5 seconds to scrape the peanut butter off the brim. Apparently either Leah gave me a messy hug yesterday or Frances got a hold of the hat when I wasn't looking.)
15 seconds to admire it from all sides

And that's it.

If I do this every day, from mid-October through mid-March (I'm hoping I can ditch the wigs by then), how much time do I save compared to the average 41-minute-a-day woman? That's 41 minutes less 2 and a half minutes.....? Times all those days? I was pretty good in math, really (even though I balance my checkbook to the nearest $10), but I can't stick around right now to do all those calculations. Gotta run as I have a consult/appointment with my radiation oncologist at 11:00. We'll be talking about the 6 weeks of radiation I'm supposed to go through after surgery. I'll post more on that later.....

Monday, November 27, 2006

Just a regular girl

Feeling like a regular girl again! These last 2 weeks have been great. I really needed that long break from chemo. I wasn't disappointed that my next scheduled treatment fell the day after Thanksgiving, when the cancer institute was closed.

Having an extra week to "recover" from treatment has made a difference. It wasn't physically that I needed a break, more mental. It would only take me a few days to feel better after chemo, and I'd go along my merry way, life pretty much as usual, but before I got too comfortable getting back to a normal routine, I'd get hit again with another treatment.

I realized that I was feeling like a normal person again on Friday, the day after Thanksgiving. It happened in Macy's. My sister Susie, my personal fashion consultant, had offered to go jean shopping with me. I had been complaining that I don't have any jeans that I could wear in public without being ridiculed, that I have no sense of fashion, and that I can't be trusted to shop alone. Of course, the Friday after Thanksgiving is probably not the best time for me to be out, with the crowds and the germs a-flyin', but I was willing to take that risk. Susie was leaving early Saturday morning and I wanted to take advantage of her style sense. Our brother David went along, to keep us company and probably also to escape the noise of our busy house.

So we were in Macy's and had great success finding jeans for me plus a few shirts to go with them. Then Susie reminded me that Mom and Dad wanted to buy me a winter coat for Christmas, so we moseyed over to try on some coats. On the way, my hair got all staticky (correction: Audrey-Angelina got all staticky. She's the wig that makes my head look big. I had decided to wear her in public that day, in hopes of conquering my fear of looking like a fat-head.) There I stood, in the middle of the coat section in Macy's, with synthetic hairs standing straight up all over my head! It was a sight. Even though my regular hair would have done the same thing, I didn't appreciate that my un-favorite wig was doing it too. I was embarrassed. So what does my brother do, but reach over with his index finger and touch my hand. ZZZZZttt! He gets a shock. So Susie tries. ZZZZttt! Another shock. They keep touching me and getting shocks, and it was annoying because I got shocked too, but at the same time it was absolutely hysterical. I couldn't help but laugh. We all did.

And that's when it struck me: I AM a regular girl! David and Susie would have done that to me when I was healthy. Why would they not just because I'm "sick"? It was exactly what I needed! I had been letting myself feel sick, with so many people taking care of me, making a fuss over me, some even acting like I'm about to keel over. I don't mean to sound rude or ungrateful, because I'm really not. I know people are worried and want me to get better, and I truly appreciate everything everyone has done for me. My getting better and feeling so rested is directly related to everyone's prayers, to my family being here almost non-stop to help out, to my neighbors bringing us dinner twice a week, and to all the caring phone calls and letters and emails I've received. I know you're all rooting for me, and I know it's helped. But there's a difference between showing concern and making me feel like I'm sicker than I am: It happened a few weeks ago, when we had some guests over, and a friend of the family (meaning well, I know) made a big show, commenting on how great my coloring is, and how my eyes have that spark back in them (I don't think the spark ever went anywhere, and how she'd know anyway, I'm not sure, as I hadn't seen her in over 6 months), and why don't I just sit down so I don't tire myself out? I know she meant well, but the kind of fuss she was making over me only made me feel small and frail, wondering if I should go back to bed. I'm sure I sound terrible complaining about it, because like I said she meant well, but honestly I just need to be treated like a regular person. Encouraging me to rest is understandable, and I do need to be reminded not to overdo it sometimes, but making a big production about it, especially in front of the kids (who know I'm sick with "booby cancer" but don't see me as an invalid) is counter-productive.

Am I really that sick? Yes, I suppose I am. The doctors wouldn't have rushed me to the Infusion Room for chemotherapy if this was an innocent little lump. But do I have to BE sick just because I have cancer? Definitely not! I don't look sick (at least I don't think I do). I can drive, I can cook, I can meet Emma at the bus stop and pick up Leah at preschool. I can wake up in the wee hours to tend to baby. I can chase Frances around the house to try to get her to sit on the potty. I can even rake leaves, something I did this weekend. It felt great. Of course I have moments (or days) when I'm tired and can't do all of these things, and that's OK. I'm learning to stop before I wear myself out, and I'm learning to ask for help if I need it. I just don't want to be made to feel like I should be spending my days in bed, curled up in a ball.

Thanksgiving Day, we were invited to my Aunt Mary's and Uncle Jack's for dinner. My cousin Kevin and his wife Jennifer and their three children (close to Emma, Leah, and Jesse's age) were there, and my Aunt Ann came over too. I enjoyed every minute of our visit. The food was delicious and the afternoon was fun. The kids all got along (plus it was nice for Leah, who doesn't have a lot of playmates on our street, to have a girl her age to pal around with. I think they had fun antagonizing their older siblings).

It was just like when we were little, and David, Susie, and I would have a great time playing with our cousins while the grownups chatted at the dinner table. The only difference was that I was one of the grownups, so I couldn't run around the house playing hide-and-seek (although I did, briefly, and so did Susie). We talked a little about the cancer (I never tire of sharing my progress), but it did not dominate the afternoon. Everyone asked how I was feeling and they were glad to hear I was feeling fine. No one fell all over me, insisting I sit down or eat something, and I was so grateful for that. I didn't feel like I had cancer. I just enjoyed being with family.

Friends are great, too, for making me forget that I'm "sick". I spent a delightful, I'm-really-not-that-sick afternoon with my girlfriends a few weeks back. It was in October, the day after I got my buzzcut. Christine and Susanne stopped by to see how I was doing. That afternoon, my husband had taken Emma and Leah to the pumpkin patch, Frances and Jesse by some small miracle were both taking long naps, and my parents were off visiting my aunt and uncle, so my friends and I had a nice long chunk of quiet time to catch up on gossip and life's happenings. I think we talked a little about my cancer but it didn't fill the room. They ooohed and aahhhhed over my ponytail wig and when I showed them my crewcut, they told me I looked attractive. They think I have a nice-shaped head. Good friends know just what to say. It was really cool just hanging out, feeling normal. The best therapy.

And that's how I felt, once again, in the middle of Macy's with my brother and sister. Nothing like being silly with your siblings to make you forget all about your problems. They helped me remember that I'm still me. I'm not an invalid. I may have cancer, but I'm still a regular girl.

Tuesday, November 21, 2006

Ever wash your hair in the sink? It's pretty weird

Delores, my ponytail wig, got a hair-washing the other day. Emma helped me. (She was so excited when I asked her!) The hair wasn't dirty, but the mesh cap that holds it together seemed like it needed a cleaning. It didn't look dirty or smell bad, but the thought of it sitting on my almost bare scalp every day seemed a little gross to me. I thought it was time.

Emma and I filled up the sink with cool water, squirted in the shampoo (Frizz-Ease Smooth Start, as recommended by the Hip Hats With Hair people), and gently swished Delores around. Rinsed and conditioned, then squeezed out the excess water and hung her on the wig stand to dry.

It was weird. The whole process took about 3 minutes, and it wasn't difficult. It was just weird. I never imagined I'd be washing my hair in a sink!

Wearing wigs can be a big time-saver. I read in the newspaper a few months ago that women spend an average of 41 minutes on their hair every day. Except for my high school days (my amateur Farrah 'do and that awful punk Carol Brady number that I can't believe I let my hairdresser try) I don't think I ever spent that much time on my hair. In recent years, I've pretty much had a nothing hairdo, probably spent more time complaining about my hair than styling it.

Anyway, 41 minutes a day comes out to about 2 years in a lifetime. That's a lot of time with your hair!

I do save a lot of time by having no hair. I still wash and condition, but I use a lot less product and it doesn't take as long to rinse. I still have some hedgehog-like hairs on my scalp, by the way, so I'm not actually a "cue ball" at the moment. The girls say I look like Bleakley, the alien in Lilo and Stitch. (In case you're not familiar with the cartoon, it's not a compliment. The girls mean it in the nicest possible way, though. And for the record, I don't totally resemble him: Bleakley has only one eye.)

I don't have to bother with a hair dryer anymore, which saves electricity. Just after I lost my hair, by the way, my hair dryer broke. My husband bought me a beautiful red hair dryer. I love to take it out and look at it. I do use my curling iron, to style Delores, and I wear her to curl her....almost like having hair again. I tried curling her once while she hung on the wig stand, but the stand kept falling over. It was funny, in an I-want-to-hurl-this-thing-across-the-room sort of way. I got John to steady it for me, but I was afraid I'd burn his hands with the curling iron. Wearing Delores was the safest solution.

While I might take a little time adjusting my wig, maybe primp a little more when I pass by a mirror, I really don't pay that much attention to my hair or lack of hair anymore. Around the house, I mostly wear a plain baseball cap with no wig. The girls and baby have gotten used to that look. Every now and then, Frances will tell me "Mommy you need to put your wig on". And sometimes Emma and Leah will ask to feel my bristly hairs. They think it's neat. Sometimes, Leah tells me she misses my hair. I kind of do, too. It was shiny and warm and it hid my crooked eyebrows. But what can you do. At least Delores washed very nicely. And my hair, as I tell Leah, will grow back very soon. Maybe I'll even spend 41 minutes on it every day, just because I can.

Friday, November 17, 2006

Interesting checkup today

Well, now I know why I've been so tired this week! I'm anemic. Not enough to have to take iron pills (phew! they are awful!), but enough....

And here I was blaming it all on the chemo. I slept most of Sunday, and was really dragging Monday. By Wednesday I was back to normal energy-wise, so I went ahead and cooked dinner and baked a dessert. Thursday morning I was exhausted again. (Wah wah wah) I just figured the chemo had caught up to me. I guess it did, in a way, causing the anemic thing.

I wonder if that's why I wanted a hamburger so badly on Wednesday? My body knew I needed that iron! Assuming my body's that smart.....I'm not so sure since it allowed this cancer to grow!

My checkup today with the oncologist was pretty uneventful, the usual weigh-in and bloodtaking. I've maintained my weight throughout treatment, not counting the 8 pounds I dropped once I was diagnosed. (I don't remember not eating, but my husband claims it's true. I had been hanging on to a few extra pregnancy pounds anyway, so I wasn't that sorry to see the weight go, it just wasn't the way I wanted to lose it at all.)

I did have something strange happen today at the checkup. My blood pressure was 99/60. "Does that mean I'm dead?" I asked the nurse. She told me that your blood pressure can dip like that when you're going through chemotherapy. Interesting.

After being weighed and drained of blood, I had a short wait to see my oncologist. Once again, she was pleased with my progress, and the tumor's progress (still shrinking, and softening too....apparently a good thing). We talked about starting up with new drug on December 1st, and how that drug (Taxol) is generally a lot easier to take than the stuff I just finished (Adriamycin/Cytoxin). So the next 4 treatments should be like a little vacation. I'm hoping!

In the meantime, I'm enjoying my 3-week break between treatments. A real vacation! I guess I'll be eating more spinach and red meat from now on. I want to be awake and peppy to make the most of this drug-free time.

Saturday, November 11, 2006

Tired and wired but glad this round's over

That's how I am today, Tired and Wired.....unable to sit still and unable to nap! Just waiting for the steroids to wear off so I can get some decent sleep. Last night I slept on and off, partly because of the drugs and partly because of the kids. Poor Frances woke up calling for me. She had a nightmare, so I held her and curled up with her for a bit, then snuck back to my own bed. She woke up again about 30 minutes later. I just carried her back to my room and let her sleep with me. It was easier. Of course, she likes hanging out in Mommy's room after chemo, because she knows I keep a big bowl of crackers and pretzels on my nightstand. After a little snack, Frances was off to sleep. She actually slept in until after 8am. Not bad!

Yesterday was my last treatment of the AC (Adriamycin and Cytoxin), one of the stronger mixes of the chemo drugs they use for my type of breast cancer. Maybe the strongest, I don't know. It has a number of pretty bad side effects, which for the most part I've avoided. Just a queasy stomach for a few days. I really can't complain, but I'm not sorry it's over!

Now I get a 3-week break and on December 1st start up with my last 4 treatments, this time of Taxol. Per my oncologist, this stuff is not as harsh on your stomach as the AC, but they administer it with Benedryll and Zantac because of possible allergic reaction, and it is a 3-hour infusion (that's 3 solid hours with the drip going, yikes! The AC was only 1 hour). I was told to make sure I had a ride home because I will be pretty groggy afterwards.

If I had a choice I'd rather be queasy than groggy. But since it's out of my control, I plan to make the most of it. After all, 3 hours of quiet is a long stretch of time, something I rarely get at home! I guess I'll bring my blanket and iPod, take a nap in the chemo chair, and enjoy my 3 hours of quiet time. And then maybe after they wheel me home, I'll actually get a decent night's sleep!

Tuesday, November 07, 2006

Thanks, Virginia!

I saw my surgeon again yesterday. It's a long story as to how I got there:
At my appt last Wednesday, I had asked him a lot of questions about the surgery. Last week he was pleased with how the tumor was responding to chemo, but was on the fence about lumpectomy vs. partial mastectomy. It depended on a few things, including whether the tumor continues to respond as I go through the rest of my treatments.

Being the planner that I am, I asked if I should find a plastic surgeon now, in case we do go the partial mastectomy route. That way, if there's a long wait I'd have a better chance of getting on his calendar for February surgery.

My surgeon thought that was a good idea, but I think because of all the questions I had that day, he requested that I drop off my mammograms so he can re-evaluate where I was before treatment started. He was going to repeat the mammogram at my mid-December pre-surgery appt, but wanted to review my films now. He said to hold off contacting the plastic surgeon until he could review them.

So I called the next day, to make sure my dr would be in the office so I could drop off my films. (They have been in my possession since my diagnosis in September. The radiologist let me check them out indefinitely. I wanted to have control over them, was afraid they'd get lost in the shuffle between the various doctors.) He was not in, so the receptionist put me through to Virginia, his nurse. I was a little frustrated because Virginia made me an appt for Monday (yesterday), even though I kept telling her that the doctor just wanted to review the films at his leisure. I didn't want to sit around the waiting room for an hour just to hand over my films to him! It was ridiculous. But Virginia said something about not wanting to be responsible for films left in the office, said it was better to see him while I can. Grrr. I didn't see the point in arguing any more, so I thanked her and said I'd see her Monday.

That brings me to Monday's appt: When I showed up on Monday, I was pleased that there was a very short wait. And that my favorite receptionist was there. She always asks how I'm doing, loves my ponytail and was surprised it was a wig. I think being a 41-year-old breast cancer patient, I stand out! Or it could be that I talk way too much, I don't know. Anyway, I again asked the receptionist, "I just wanted to drop off my films but Virginia said I needed an appointment. Are you sure I can't just drop these and run?" She checked with Virginia, who actually was right there listening to me question her judgment, and confirmed that Yes I do need to see the doctor! Oops.

Well, it turned out that Virginia was steering me the right way after all. My doctor met briefly with me after reviewing the mammogram and decided to repeat the mammogram right then and there, and not wait until mid-December. The mammogram showed the tumor had indeed shrunk significantly, enough that he could do a lumpectomy NOW! But we decided to wait and go through all of the chemo as discussed last week, in hopes that the tumor will shrink even more. I'm glad I listened to his nurse. Even though it didn't change my plan, it did give me peace of mind knowing that the way things look now, I will not need a partial mastectomy (or a plastic surgeon for reconstruction).

I'm so encouraged by everyone's reaction to my tumor's response! I don't want to get my hopes up too much, but I've heard that sometimes the chemo can shrink a tumor so much that there is nothing left to take out. Wouldn't that be cool if it was my case? Although I'd insist they remove something, just because. I guess they'd have to go in and take something from the general area, and my lymph nodes would have to go too. Hey, since they'd have to go in anyway, maybe they can do some liposuction while they're there. My hips and calves have plenty to spare! I'll have to ask my surgeon next time I see him....

Sunday, November 05, 2006

My big fat head!

Went to church today with my mom and the girls, the 9:45 contemporary service, which is not my favorite because they play rock music, no hymns. They even have a full band up front in the sanctuary, which to me seems out of place. No organ music, no choir, just a short piano solo during the offering. I don't find the contemporary music very peaceful, but the pastor is great and the sermon is always interesting and I do get a lot out of that.

We go to the 9:45 service because the Sunday School at 9:45 is wonderful, a big affair with several classrooms separated by age/grade with at least 10 kids in each class. During the traditional 11:00 service (the one I prefer because they have a choir and an organ and hymns and don't make you read the lyrics projected onto the sanctuary wall), they only have one Sunday School class that combines ages 5-8. It's a small group, and the girls don't care for it as much. I'd rather they be with more of their friends at the 9:45 service.

Anyway, my mother and I attended the 9:45 service, which is very crowded. I decided I couldn't get away with my ponytail wig and baseball hat for church, so I wore my new wig, the one Susie and I bought after my last treatment. This wig we call Audrey-Angelina. All of my wigs have names. The ponytail wig is Delores, and the headband wig is Paige. The new one I wanted to call Audrey, because I had hoped to name the baby Audrey but she turned out to be a he....Jesse! I added Angelina because Leah liked that name for the wig.

So I wore Audrey-Angelina to the crowded service, hoping I'd blend in and no one would notice me. I just sat there, unable to concentrate because I think my head seems unnaturally large. I don't have a very big head anyway, and my hair never had much there I sat with this big (I think) wig on top of my head. The bangs on it are a little too long (I have an appt Wednesday to get it trimmed) and they kept falling into my eyes. Synthetic hair is itchy, in case you were wondering! I felt like it was puffy on top and in the back, and getting a little static-y, but I didn't want to keep tugging at it or smoothing it and draw even more attention to the fact that I'm wearing a wig. Not to mention that it's a dirty blond color, not real close to my old hair although a pretty shade I THOUGHT I could pull off. Not sitting in church, however. I just felt like everyone was looking at my big fat head! It was awful. Maybe it was the rock music, maybe it was just me being paranoid. I tried to get over it by not making make eye contact with anyone. I did run into someone from my neighborhood as I was dropping Frances off at the nursery, but said a quick hello and kept moving, pretending I was in a hurry.

I now see why some women decide to go bare-headed, or wear scarves. Why try to fool everyone anyway when everyone knows you're bald? I haven't warmed up to the bare-headed or scarf options yet--plus it's cold out you know--so for now I'll stick with Delores (the ponytail wig) and hold my head high when I have to wear Audrey-Angelina. Paige is only an around-the-house option because she's too big and slips down a lot, making me look like the female ape (what was her name?) from Planet of the Apes.

Maybe after my hairdresser trims the bangs on Audrey-Angelina, which really is a nice wig, I'll feel a little less self-conscious about this whole big fat head thing. I'm hoping! Or perhaps I can find a bejeweled baseball hat that could be considered dressy enough for church!

Friday, November 03, 2006

Hello, I'm home and my white count is up and no one cares!

Hello, I'm home and my white count is up and no one cares! Yippee for me! I walked in and announced my happy news, but only my mom said hurray. That's OK. I'll tell you guys all about it:

I just got back from my off-week checkup with the nurse practitioner (NP). They take my blood the minute I walk in the office and then make me wait about 30-45 minutes before bringing me in to the NP's office, where I wait another 30-45 minutes before I can see her.

My white count is good, which means I'm not any more susceptible to germs than other parents with 4 sniffly-nosed kids in the house. My white count was down just once, and it was a big pain because I couldn't handle or eat fresh fruit and vegetables, touch fresh flowers, or be around crowds. The doctor was worried I'd catch something. That was my Girl in the Bubble weekend. I asked them to recheck my blood a few days later, and it was fine, so I could resume contact with fruits, veggies, etc.

I didn't have to wait very long to see the NP this time. Last time I waited over an hour and a half, and I had nothing to read and nothing to write on. This time I planned ahead and brought 2 books plus my Franklin Planner. But I didn't read or write or plan. Instead, I ended up chatting with another patient in the various waiting areas (while we waited to get weighed, and to get our blood drawn, and later where we waited to be called to our appointments....we're shuffled around like cattle).

The patient I met at the doctor's office was named Dwayne. He's 48 years old, works in IT, has a teenage daughter who wants to get her learner's permit, a wife who is not the best of drivers, loves to fish, and is quite a talker. He also has cancer, and he's terminal. Over the last 2 years they've tried all the drugs on him, he says, and this last round is his last shot. He's very matter-of-fact about it. We had a nice chat, talked about being upbeat because what else would you there will always be someone worse off than you have to keep moving and keep busy so you don't give up....things like that. It was nice to meet someone with such a good attitude. I've run into other cancer patients who have no idea what drugs they're taking, no sense of humor, just seemed defeated. Not to be unkind, but that just bums me out, and I try to avoid that.

I talked with Dwayne until they called me off for my appointment. And I did end up reading one of my books while I waited in the NP's office for 30 minutes. But as much as I enjoyed my quiet time with my book, I enjoyed my conversation with my cancer friend much more. I don't know if I helped him, but he certainly did help me.

Wednesday, November 01, 2006

And the surgeon says....

he agrees with my oncologist. Let's continue with chemo, since my response has been so good thus far. The lymph node in my armpit is now hard to find, the mass in my breast has shrunk from about 5.6cm to 2cm (that's just the dense tissue part....the cancerous part inside it was originally only about 2.7cm, so imagine how tiny the cancer is now! For background on tumor size/type/etc, see How I Found My Cancer.)

Everything is responding so well, they want to continue with the 4th treatment of the strong stuff (Adriamycin and Cytoxin, or A/C) and then move on to another drug called Taxol. And THEN, after I complete all 8 treatments, they'll do a lumpectomy (at this pace it's likely, said the surgeon, instead of a partial or full mastectomy) and also remove the lymph nodes in my left armpit. And then I'll have radiation. Probably.

Or at least that's the plan for now. It's different from the original plan: I don't remember anyone saying they'd definitely remove the lymph nodes. I thought it was a possibility, but now it sounds like a probability. I also don't remember "radiation" in any discussions, but a lot after my Sept 5th diagnosis is a little blurry. But least we have a plan.

I'm not exactly sure I'm thrilled about continuing with all chemo up front. I was kind of hoping to get a break in between and do the surgery followed by the last 4 chemo treatments. Not that surgery is exactly a "break", but you know what I mean! At least this way, my husband reminds me, I'll get all the chemo over with so that after surgery all I have to do is recuperate. And I do get a 3-week break in between the 4th and 5th treatments, thanks to Thanksgiving. There's a bright side, too!

Speaking of bright sides, here are a few. Thought I'd end on a happy note:

  • The next chemo drug, called Taxol, is supposed to be easier on my stomach than the A/C. Hopefully that means fewer crackers, more lasagne! I have not been able to tolerate Italian food (my favorite) since chemo started.

  • My treatments fall nicely around Christmas and New Years, so I can enjoy somewhat normal holidays.

  • I still have my eyebrows!