Incognito cancer patient

I'm undercover today.

It wasn't by design or anything.  I just didn't want to have to figure out what to wear on my head that would match with one of my few long sleeved shirts.  It was actually raining in San Diego today, and the chillier weather warranted something other than short sleeves that I've grown accustomed to.   I was running short on time, so I just put on my wig.  Just for good measure, I also strapped on the girls.  That is, the prosthetic breasts.  Or as I affectionately refer to them, my "foobies."

The wig is really super.  I catch glimpses in the mirror or in a window, and it really does look great.  Like I just stepped out of the hair salon.  And it doesn't go flat in a few minutes!  No bad hair days with wigs, that is for sure.

But it has been a strange day.

Jean-Marc and I went to our weekly mommy and me class, stopping at the library first. I was out and about, going about normal business looking "normal."  Not with a look that screamed "CANCER PATIENT!"  The other moms at the class had seen me in head scarves, so they knew.  I was even a little nervous about showing up in a wig when everyone knew anyway. But not everyone did.  One mom complimented me on my hairstyle.  She said, "I wish my hair would do that."  I almost said, "I wish mine did too!"  I wasn't sure of what to say, really.  Did she know?  Hadn't she noticed the scarves the weeks before?  Or even when we all openly talked about it after the first week or so, just to break the ice?  Maybe she wasn't there that day?  I just accepted the compliment with the "thanks."  When the second mom said something and asked me about the color, I came clean and told her it was a wig.  She asked me if I changed wigs a lot and I told her about the chemo, cancer, and all of that.  She was really sweet about it and we talked about the treatment and stuff.  Like others have said, she had no idea that I was going through of that, and how amazed she was that I was coming to these weekly classes,  and so on.   Again, that is all thanks to God's grace, definitely not my own strength.

I also went to Trader Joe's incognito.  The employees there are so friendly.  The lady checking me out was chatting as she scanned my groceries.  "Did you have a nice weekend?"  she asked me.  Hmm.  What to say. Do I really lay it on and say that I was resting after chemo?  Ha! Probably more than she bargained for with her small talk.  I just said that it was fine.  She asked if I had enjoyed our "light show" on Monday.  Like I mentioned before, we've been having weather in San Diego this week, and apparently she was referring to rain or some lightening on Monday.  I didn't know there was lightening, but then again, I was in the fog on Monday.  I just told her that I was hibernating with the cooler weather.  I don't need to give a reason.  Besides, then you get into the whole cancer conversation.  I'll pass.  Especially when I'm masquerading as a healthy person!

I realize how wrapped up in our own appearances we are.  For one, people who have seen me in cancer garb and see me in the wig don't always notice.  Some do.  But I'm surprised at how many don't. Not everyone is taken aback by the head scarves, I realize.  Although some are.  I've noticed people of all ages giving me sideways glances out in public.  But even for me, just looking normal today has been a total head trip, affecting how I act and feel.  It's interesting.  That's not to say when I'm wearing a scarf I feel bad.  Very often, I feel just fine.  Heck, some of my scarves are worth more than the wig! Something that I used to say in high school (to justify sometimes going around like a slob) was that everyone was too worried about the zit on their nose to notice yours.  I suppose that is true.  Appearances make a difference, even though they shouldn't.

On a slightly related topic, someone asked me today where I get my head scarves.  She has a friend who was just diagnosed with colon cancer and her hair had started falling out after chemo.  I thought I'd give a list of where I've gotten some of mine:

• 4 Women: This is where I get my "beau beaus."  They are great because they slip on like a hat, but look like a tied scarf.  They come in lots of colors, patterns and fabrics too.  Each one comes with a matching scrunchie.  
• France Luxe:  This is a pretty high end site with all kinds of hair and head accessories.  But they have a wonderful program called "Good Wishes" where they will give chemo patients a free head scarf.  The one they sent me retails at $72!  They are gorgeous, made of silk with crystals in the tails.  Lovely! 
• TLC: This is the American Cancer Society's online catalog.  They have lots of  hats, scarves, bands, and hair loss items.  Things you never even thought that you might need....like night caps to catch hair that falls out at night.
• Headcovers Unlimited: A lot like TLC.  They also have kits and templates to draw on eyebrows that come out.  
• Your own collection?  I happen to have a lot of silk scarves, thanks to my husband and mother in law. I would get a Hermes or Louis Vuitton scarf on major holidays and Mother's Day.  It was my own personal "French Connection." A 30 inch square scarf can be tied into a turban pretty easily.   I've also found hats at Target and Marshall's.  Check out this video for tips on tying: 

I have a few more stops to make today.  I pick up Isabelle from her girl scout meeting very soon.  That should be fun...her leader is a breast cancer survivor and will like to see my wig.  Then I have to take Olivier to karate.  I've been there 2 other times in the last week, but wearing a scarf or a hat.  Today, I'll go incognito. 

Round Two in the can

I woke up this morning ready to go! The morning here getting ready was pretty smooth-I had the kids' lunches ready to go the night before. We were out the door by 7:25 a.m. I dropped Olivier off at his school, then dropped Isabelle off at her friends' house so they could walk to their school together.

I had about 45 minutes to kill, so I met my mom at Discovery Lake and we did a couple of easy laps. She took Jean-Marc from there to the Wild Animal Park for the morning. (I will never call it "Safari Park," by the way!)

I walked into Kaiser, and I'm sure everyone could see where I was headed...the chemotherapy suite! I was dressed in my battle gear: pink yoga pants and matching hoodie, my pink ribbon T-shirt that says "GOD...so much bigger than cancer!"; and a pink head scarf that I picked up this week. I even had matching hot pink toenails! That was coincidence...that was the pedicure I had a month ago. By the way, I am more and more comfortable going out with the headscarf "cancer patient" look. Own it, baby! This is what I'm going through right now, so be nice to me, world! :-)

I was able to pick my chair, so I headed right for the one by the windows so I could perhaps get a little bit of reception on my iPhone. Yep! As many of you know, I was able to update my facebook status while there.

The routine goes like this: the nurse comes over and wraps your arm in a warm towel. She logs onto the system and asks you about your meds, which ones you are currently on, and which ones you will be taking during this round. Then she puts an IV in your arm. This time, it went in a bit low. It looked like it was on my hand, but the needle inside actually reached down to my wrist. Every time I moved my wrist, it kind of hurt. No biggie, but definitely something we want to do differently next time. They start a saline wash and give you the maximum dosage of an anti-nausea pill. (Zofran for me). Then they give it some time to take effect, that was about 10-15 minutes. I was able to breeze through some back issues of People magazine. I must live in a cave, because half the people in the magazine I've never heard of! Then they come and make sure your name is the name on the bag of chemotherapy drug. You verify it, they pop it in and you sit there for an hour or so for it to pump into your body. This time, they started me off a bit slower, but faster than last time. After about an hour, they change bags with the other chemo drug you are prescribed. When it's done, they do a little saline wash, take out the IV and you are on your way.

This may sound bad, but I actually enjoy these visits. I don't have to worry about anyone else but ME. I can do whatever I want. I can read what I want. I can watch TV if I want. I can snooze. I can listen to my iPod. I don't have to worry about kids, diapers, or any of the daily minutiae that being a mom entails. I can relax knowing that Jean-Marc is having fun with Grandma, the others are in school, and its all good. I drove myself today and felt fine to drive home. I told Eric I would call him if I felt weird, but I was fine. No dizziness or nausea.

When we all got home, Jean-Marc was acting kind of weird. He had been outside and active all morning, so we knew he was tired and hungry. I made him what he asked for: PB&J. (Organic everything on whole wheat). He only ate a few bites and started crying, "pee pee, pee pee" and grabbing at his crotch. I asked if he wanted to sit on the potty, but he said "eat, eat." Okay. He just was fussy and didn't eat much. I figured he was too tired--it was close to 1:00 p.m. by then.

I took him upstairs and changed him, and he wasn't wet at all. I kissed him and put him down for his nap. He laid right down and I figured he was out for a few hours.

Mom and I went to the San Marcos Brewery. I thought the chicken tortilla soup sounded good. While we were there, I got a call from Eric that Jean-Marc woke up panicky, sweaty, and crying. He took his temperature, but it was normal. He let him play in his room for about an hour and he finally got down around 2:30 p.m.

Still, he was acting strange about food and elimination all day. I wonder if he has a tummy bug? His hives have gone away. Now this. Poor kid. When he woke up, he did have a normal dinner. One of his favorites, Trader Joes Chicken Noodle soup. Hopefully, he'll keep it down and have a good sleep tonight.

I came home and made a recipe from my new cookbook. It's Creamy Broccoli Potato soup. I've got it all blended up, it just needs to be reheated when we are ready. I hope its good.

How am I feeling? I am a little tired. But it is the end of the day, so that isn't unusual. I have moments of funky stomach. I think I'll take a Zofran before dinner. I don't feel super hungry, but I think the soup will hit the spot. Other than that, I feel pretty normal. I'm drinking TONS of water to help the chemo drugs circulate. I've easily had about 100 ounces today, and I don't feel waterlogged. In fact, I could drink more. It's great how your body will tell you what you need if you just listen to it.

My prayer requests:

• That Jean-Marc be healthy. Its a worry when a little kid can't verbalize what is going on that is distressing them. Pray that he is okay and HEALTHY.
• That I am able to tolerate this round of chemo as well as the last. Starting with a good night of sleep tonight.
• That these drugs do their job. INFILTRATE AND DESTROY!

Good Wishes

I got a wonderful surprise in the mail today. A few weeks ago I mentioned that the website FranceLuxe has a "Good Wishes" program where they offer a free silk headwrap for women in chemotherapy treatment. I'm all for the silver lining in all of this, freebies included.

My wrap came today! Almost as meaningful as the headwrap was the wonderful card that was enclosed, signed by people that I don't even know. How awesome is that?

The designer, Laurie Erickson, asked me to list three of my favorite patterns. The one I got was the silk paisley print in a camel color. Incidentally, that was the first one I had chosen for my top three!

Here is a picture of Isabelle posing with it in or kitchen. I'm a little shy at the moment to model it. I'll need it soon enough when my hair starts falling out. I expect that to happen within the next week.

By the way...isn't Isabelle stunning in her "pink & plaid" skirt?

An itch that I can't scratch

I suppose this is a sign of healing and I should be glad.

But my incision areas ITCH LIKE CRAZY! It is driving me nuts. I can't scratch it because it is still tender. Besides, that would probably be really bad anyway. The sunburn feeling is still there, but now it is an itchy sunburn. I sure hope it goes away soon. This will seriously drive me insane if it goes on for too long.

On a lighter note, there is a wonderful scarf designer named Laurie Erickson who has a webstore with really upscale hair accessories called France Luxe. She has a program called the "Good Wishes Program" where she will send you a free scarf or head wrap. They are gorgeous. How nice is that? They retail for about $72. A lot of her scarves are silk. I've read that silk can slip off your head. But I think the silk wraps have a band sewn into the inside so it won't slip. I've ordered a scarf/hat band from another company that I'll try with some of my own silk scarves.

We had a great opportunity today to pick the brains of some of this country's smartest oncologists. I mentioned before in my blog that through his work with Prestwick Chemical, he has made contact with a researcher at MD Anderson Cancer Center. MD Anderson, located in Texas, is ranked #1 in cancer care in the country. He specializes in combination therapies for cancer. Anyway, Eric asked him today his opinion on the issue of whether or not I should take the Adriamycin. His associate passed the question onto a senior colleague who specializes in breast cancer oncology. This was his answer:

"...the standard regimen in place in California excludes Adriamycin. There is a preference for the inclusion of Adriamycin here but this is not widely accepted and moreover has not been demonstrated to be beneficial in a controlled study. In short, it is fully reasonable to exclude Adriamycin from his point of view and indeed, many leaders in medical breast medical oncology would argue strongly against using Adriamycin."

So there it is! Confirmation by some of the smartest and cutting edge cancer gurus in America. It makes me feel more settled about it to get this news. I already trusted Dr. P, but this confirmation only makes my esteem grow. So that is the decision. No adriamycin for me.

This is such a God thing! The fact that Eric just "happens to know" people at MD Anderson who work in this field is divine. It's not an accident. I had been praying and asking people to pray that I would get confirmation. Here it is!

My prayer requests:

• That this itching would go away. It is seriously uncomfortable.
• That we would have a nice day tomorrow (Thursday) before chemo begins. We are going to organize Isabelle's room in the morning. I'm trying to get her hooked into the Flylady system. Hopefully if we can work together to get her room into a good state, she can "Fly" from there. The state of her room has been a source of conflict between her and her dad.
• That I be able to sleep. I've been having trouble waking up in the middle of the night and not being able to get back to sleep. A full night of uninterrupted sleep would be nice.
  
• Of course, healing is always a prayer request. That the cancer already be gone. If it isn't, that this chemo regimen would be effective against it.

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.