Mad hatter

I wore a hat all day today for the first time.

I've always liked the look of hats, but been too chicken to really wear one myself. Women who wore hats seemed to have a particular flair and sophistication. Something that I never felt I could pull off. I don't have a whole lot of choice now. This cancer thing is pushing me into zones I wasn't comfortable in before.

Another issue with hats is that there is no hairline. It can look weird (there is that word again) to have a hat perched on a hairline-less head. I've purchased a few wide headbands that I could wear to conceal that and create a line. Today, I just put the hat on my head and was done with it. It felt okay. I wore makeup and earrings which helped the confidence factor. Something about lipstick, you know?

Physically, things are going great. As predicted, I was pretty sore from the pilates on Monday. I have Exercise TV on my cable's On Demand system. There are dozens of exercise modes with hundreds of workouts to choose from. Today I did a 20 minute pilates just to get a little exercise in there. I'm going to try and do pilates 3 times a week on top of the cardio I do pretty much every day.

My taste buds are pretty much back to normal as well. That metallic taste has faded. Funny, that taste doesn't seem to make me want to eat less! I'm learning to load up on veggies and legumes and consider meat as a side dish, if anything. I wrote yesterday about how much I'm coming to appreciate cabbage. I could also devote a whole post to beans! And no, they do not give me gas. (TMI? Maybe, but that is the first thing that people mention when I rave about my new found love of beans!)

I had a funny conversation with a friend of mine, a guy friend. We were at the elementary school and a mom walked by with purple highlights in her hair...in a shade that matched her shirt. I commented that her hair matched her shirt. I also noted that I notice two things a lot lately on other people...hair and boobs. A few seconds went by and he said, "Now you know how its been with me all this time." Too funny! But its true. I can't help but notice this on other women. Okay, gals...don't feel self conscious next time you see me. I really won't be looking at your chest, I swear! I talked with another survivor who would go up to women and actually ask them their bra size as she was considering her reconstruction options. It's funny how you lose the shyness about it when you are so focused on it medically.

So I'm just living life until my next round of chemo, which is October 1st. (A week from Friday.) What a way to kick off breast cancer awareness month, eh? Speaking of that, I got a really cool travel mug today at Supercuts of all places. It's black with 4 or 5 rows of rhinestones at the top. It says "Fight Like a Girl" with pink boxing gloves on it. I couldn't pass it up. I'm a sucker for that kind of stuff right now. Maybe I'll get sick of it. But for now, I'm digging it. It's my first BCA month being "in the club" that I never thought I would be in. I think back to last October when I was looking at my40th birthday. How life can change in 12 months! I wonder what life will look like in October 2011?

Coming "Out"

Today I made my debut to the world as an obvious cancer patient. A sick person. Even though I feel great and normal on the inside.

Even though I have a wig, I don't want to get sucked into wearing it every day. Besides, I've collected a few hats and scarves that I want to give a try to as well. This morning, I chose to wear a "beau beau" scarf. This is the style of it. (That's not me in the picture, its from their website.) They are cool because they are lined and already pre-fitted. All you have to do is slip it on your head. You can leave the tail, or use the matching scrunchie to make a bun.

I was a little nervous getting out of the car at Isabelle's school. Although many people already knew I had buzzed my hair yesterday, still....this was it. But it was okay. I told Isabelle ahead of time that I didn't want her to draw attention to me. I didn't want a gaggle of 9 year olds whispering and giggling. Isabelle is a bit uncomfortable with it still, and she deals with it by being silly.

I went on a power walk with some girlfriends and then took Jean-Marc to his mommy and me class, "Moove & Groove." He had such a great time. But it was strange to see myself in the mirror. I didn't know any of the other moms, but the teacher is a friend of mine. There I was, the cancer patient. One lady asked me if Jean-Marc was my "miracle baby." I said "What?" I was thinking to myself, "aren't they all?" I later realized what she may have meant. Perhaps she was referring to a post-diagnosis baby? One issue younger women with cancer face is forced infertility. Some women harvest ovaries before treatment to do IVF later. Perhaps that was what she meant? Regardless, I felt a little weirded out. But it was a fun hour anyway. I hope to go to as many of these as I can with him. If I can't go, maybe his grandma can take him. He really does enjoy it.

This afternoon, I changed outfits for a couple of errands and Isabelle's girl scout meeting. (I'm a co-leader, even though I'm not doing a whole lot right now.) I tried a hat instead of a scarf. The hat was actually more comfortable. The stubble on my head hurts when its rubbed, and the hat doesn't do that as much. We did much of the meeting outside, and I was a little worried that the wind might blow the hat off, but fortunately it didn't.

So I did it. I "owned" it.

I've been having trouble sleeping this week. I must have some anxiety over the chemo coming up. Maybe last night it was anxiety over my impending "debut." It throws a whole new angle into planning what you are going to wear. It's not like I'm dreading the chemo-I actually am wanting it to come so I can get it over with. I remember having trouble sleeping the nights leading up to the first round. I wake up in the 2 o'clock hour and cannot get back to sleep for a few hours. I'm pretty tired today as a result. I think tonight I may take one of the Ativans to get me through the night. I want to be as strong as I can be on Friday, and sleep is key.

My prayer requests:

• SLEEP! Eric and I both have been having problems sleeping. Eric's is because he has come down with a cold. Maybe I'll suggest he take some Ny-Quil tonight. I would love to close my eyes and not open them again for at least 7 hours. Maybe more.
• The health of my family. Like I said, Eric has a cold. Jean-Marc's hives seem to have faded, so that is good. Just pray that everyone get healthy and stay that way as I go through this next round of chemo.
• That my appointments tomorrow go well. I get my blood drawn and then meet with my oncologist, Dr. P. I have no idea what he will go over with me. But pray that everything looks good and that we are on the right track in fighting this disease.

It's all in (or on) my head

Today I am 3 weeks out of surgery and 9 days before chemotherapy starts. I realized yesterday that chemo is NEXT WEEK. Gulp. It's okay. I really am looking forward to it in a bizarre kind of way. Right now I'm swimming in a sea of unknowns. How am I going to react? What side effects will I have? Will I gain weight? Will I lose it? Will I be able to get the kids to school and put food on the table, or just want to stay in bed? I've read such a huge range of stories and every single one is different. Mine will be too. I just can't predict it. I'm going to make a "chemo calendar" for my growing breast cancer 3 ring binder. I can write down side effects and when they happen so I can report it to the oncologist. It's something I can "do" to help.

I've begun collecting hats and a few head wrap things. I found this site that sells head scarves called "beau beaus." I got a couple of them, they are kind of pricey, but very nice. They come with a matching scrunchie so you can knot the tail of the wrap into a bun and have different looks. Having to accessorize my headwear is going to be a pain. I'm not that good at accessorizing in general, so to have to consider what to put on my head is going to really throw me for a loop! I've got dozens of gorgeous silk scarves that Eric has gotten me over the years, but I've read that silk slips off your head. I've got a few hats as well.

There is always the wig option. I do want to get one, just in case. But I kind of feel a bit about the wig like I do about the fake breasts. Everyone knows I have cancer. I may feel like everyone is staring at the fake hair. I don't know. Maybe there will be times when I'm going out in public and people don't know me and I'll want to look like someone who is "healthy." On the other hand, going out with a head scarf may also get me some sympathy. Maybe not. Who knows?

I've also been pondering what to do about the hair I still have for the next few weeks. It has been falling out since Jean-Marc was born. Every time I wash, I lose a lot. We chalked it up to hormonal changes, but it now looks like it was a warning sign for me. Anyway, I will be glad to get post-chemo hair. I've read that it grows back thicker and even wavy. The "chemo curl." But in the meantime, how do I get rid of the hair I have? Do I do a short cut and then let it fall out little by little? Do I just shave it off? That could be shocking--almost as shocking as seeing myself scarred and breastless for the first time. If I do shave it off, when? Dr. P said my hair would start to fall out about 10 days after the first chemo round. Or, do I do nothing and then let it fall out little by little? That might be a little traumatic, not to mention messy. My bathroom counter has already got hair all over the place from the hair loss I've been experiencing. I don't know what to do. I have a fantastic hairdresser and friend who has offered to do whatever I want. I just don't know what that is.

I'm still off the pain meds, praise God. It will be 2 days today. I think I'll be able to stay off of them. I just pray that this sunburn feeling goes away. Last night, I slept without a camisole on underneath my pajamas for the first time. It felt good while sleeping, and was definitely not as hot. This morning it feels weird to have my silk pajamas brushing up against my incisions. Kind of tickly. I guess that is better than the chafing sunburn. I'm still swollen on my left side.

My prayer requests today:

• Healing, healing, healing. My incisions really are looking pretty good. The swelling is going down, little by little. I'm even able to 'kind of' roll onto my left side in bed (with the support of little pillows). This sunburn feeling is the biggest thorn in my flesh right now. I would like it to go away. If that is not His will, that God would give me the strength and grace to handle the pain.
• That I would find something "fun" to do with the kids this afternoon. They've been housebound and are bored. While a nap or just reading would top my list of things to do this afternoon, I would like to do something fun with them.
• For God's grace and comfort to all of those people out there in cancer treatment. It's not an easy road. I am definitely not alone in this.

Just can't escape it, even in paradise!

I'm back home from Catalina.

It was nice to change the outside scenery for a few days. Taking care of the practical needs of everyone while out of my usual environment helped to distract me from time to time from the "big C" refrain that is on an endless loop in my head. But it definitely pushed its way to the forefront many times. I tried to focus more on making sure everyone had a good time and did thing that they wanted to do. Isabelle had heard about glass bottom boats, so she and I did that on our last day. Olivier was pretty flexible with stuff and seemed to have a good time. Jean-Marc absolutely loved the swimming pool-he definitely is a water baby. The first time I took him in, he was giddy! It was really cute. We got many adorable pictures of him hamming it up for the camera.

But cancer was never far away from me. I don't think Eric noticed it until he downloaded some of his pictures that he had taken the first day. When he saw this one, he realized my mental state. We were on the boat on Tuesday morning, pulling away from Long Beach harbor. The picture does a good job of summing up how I am most of the time. I'm physically present, but not "present." I wish I could be fully engaged mentally in what is going on around me...especially when it is good.

Maybe I'm more sensitive to cancer related things. But I kept hearing snippets of the conversations of passers by that brought me back to it as well. For instance, walking on the pier, a man was on his cell phone and his end of the conversation that I couldn't help but hear went something like, "...they think they got all the cancer out in the surgery...." Every tourist shop I walked by I peered in looking at their collection of hats. I'd like to get a light brown/beige hat to wear once I lose my hair, but not one made of straw. Gosh, even a sand sculpture Isabelle made with her hands looked like breasts to me! Is that nuts or what?

On Wednesday afternoon while I was at the pool with the kids, Kaiser left a message on my cell phone. I called them back to find it was the "surgical outreach" department. Unfortunately, by the time I got the message, they were closed. I called at 9 a.m. on Thursday and left my own message. When they called back, it was just a medical history pre-op interview. Sigh. My medical history up until now is pretty boring. No other medical conditions. No disease. No medical devices. No medication. The only interesting part of the conversation was when she asked if there had been any changes in my weight over the last 6 months. Bingo! I told her I had lost 50 pounds. She asked me if I was going to write a book about how I did it. I told her that Jillian Michaels already had. After I hung up with her, I called the surgical scheduling department to see if my surgery date could be moved up. The answer was NO. That bummed me out for a couple of hours. I felt better after lunch, but my mood seemed to latch onto Eric, who was out of sorts for the rest of the day. I'm not sure why. Perhaps it was realizing how much 2 1/2 days restaurant meals was costing.

I went out for a run early on our last day. The hotel had a "gym," which was a small room with some old equipment. Why run on a broken down treadmill when I could run around the island? I ran up to the Wrigley Memorial, which is on a slight incline. I ran back down. I ran through the small town of Avalon, past the boat terminal on Pebbly Beach road as far as they would allow pedestrians. It took about an hour. It felt great, but my old shoes need replacing, so my knee started hurting. The run was nice, but pointed out this disconnect I have--here I am, able to RUN for an hour. To the people I run by, I don't look sick. But here I am, with cancer cells dividing inside me, trying to kill me. I'm glad I went for my run. I want to feed that "strong" side of me for as long as I can.

I hope I don't sound too morbid or self-pitying. I really did have a good time and I'm glad we went. As my last post showed, God is ministering to me to help me get through this. The trip gave the Eric and the kids a sense of having had a vacation, and I'm 3 days closer to surgery.

My prayer requests:

• I continue to have trouble with sleep. I get to sleep okay, but if I am roused in the night for whatever reason, I have had trouble going back to sleep.
• That this cancer does not get any bigger. My cancer is estrogen driven. This week has been a pre-menstrual week for me. I've been paranoid that my cycle is making these tumors grow like in time-lapse photography. I won't know what "stage" or how big it is until after surgery. Not knowing this is kind of eating at me as well. I really don't want to be at stage 3, but I'm afraid that I may very well be.
• I know the surgery date is in God's hands, like everything else. But each day of waiting is torture. I pray for an earlier date-every day makes a difference. Waiting for certain pain is hard. I'd rather just jump into it and get it over with.

Hair today...gone tomorrow?

When I was in high school, I remember my friend Kelly and I talking about how convenient it would be if everyone were just bald and had a wig collection. Then you wouldn't have to worry about bad hair days. Just pop a wig on your head and you're out the door.

Having kids has wreaked havoc with my hair. After Isabelle, I had hairs on the top of my head break about 3/4 of an inch from the root. So it kind of looked like a mohawk. After Jean-Marc, my hair has been thinning. It was fine to begin with, so to lose some of it didn't help. On top of all that, I've got some gray starting to show.

So you'd think that the prospect of losing my hair wouldn't be a big deal. It's not really. Or is it? I'm not sure how I feel about it all. Today, I started considering that reality when I tried on some wigs at the American Cancer Society's shop. They give chemo patients a free wig (and a free hat, I learned). I got my wig...but it felt strange. The texture is different, the color different, the cut different. Of all the options, it was the best fit for me. I'm not sure if I'll wear it much, though.

To strangers on the street, they won't notice anything out of place. They won't give me a second glance. To people who know me, though, it will probably take some getting used to. I guess it will all boil down to how I feel wearing it. I may feel more comfortable in a scarf and hat.

I've got this catalog of all kinds of hats and scarves. It is mind boggling. I think I need to go try things on. Do I get my hair cut shorter before it all falls out?

I think I am okay with the hair loss thing...its just the process that will be kind of freaky. It is one thing to intellectually come to terms with it. But to pull out clumps of hair is going to be beyond bizarre.

We aren't 100% sure if chemo is going to be before surgery, but we are leaning in that direction. That could mean as early as next week. I meet the oncologist on Friday to find out more about what treatment he suggests. One thing I do know for sure...I want to get started, even if it does mean losing my hair in a few days.