Tonua Has Sent You a Project Pink eCard

We all know it's the little things that often make the biggest difference in our lives. That's why Munchkin, maker of award-winning infant products, launched a limited edition pink duck to support the fight against breast cancer. Given that 1 out of every 8 women faces the risk of breast cancer in her lifetime, Tonua thought you might enjoy hearing about a little thing that could help make a big difference in the fight against this disease. Please visit www.munchkin.com/projectpink to find out more. Dear Taming the Savage Breast Readers, I just learned about the coolest thing that the company Munchkin and celebs are doing to help combat breast cancer. Munchkin is selling this limited edition pink duck and proceeds are being donated to the Susan Komen foundation. They've also enlisted some celebs to decorate a few that will be available for bid on eBay during the month of October. From, Tonua

Weekly Doctor's Visit

I didn't post on Monday because it turned out that, this week, I met with my doctor today instead of Monday. Next week, I'll start meeting with him regularly on Mondays.

Basically, he just wants to meet with me each week to monitor any side effects I might be experiencing from the radiation. Given that I just completed my first week, I haven't actually experienced any side effects yet. He said that I can expect to see some mild skin irritation in the next week or so.

As I mentioned before, the skin irritation will look like a sunburn. I probably won't feel anything, though, given that I've had surgery and most of the nerves in the area have been cut. I don't feel much at all in those area. I do wonder if feeling will ever come back to that area. Several of the women I've spoken with that have had mastectomies in the past (at various time frames) say that they still experience some numbness in certain areas.

I don't really have any news. There was nothing new to learn from the doctor today... or at least nothing that I thought to ask. As far as I can tell, the treatment is going fine.

I'll keep you posted.

It's 9:00 PM and All is Well

I started radiation this week, as scheduled. I went in on Wednesday for my first treatment forgetting that the first appointment isn't an actual treatment. During the first appointment, they simulate everything to make sure that the treatment configuration was designed properly. Basically, they line my body up with where the radiation beams will penetrate my skin and make sure that the path of the beams and the shape of the beams are correct for me. If the simulation matches up to the original scans they took the week before, then I'm ready to go. They did, and I was.

So, Thursday, I had my first actual radiation treatment. I think I mentioned in my last post that radiation is x-ray (which stands for electromagnetic radiation, by the way). So the treatment is painless. It's just like getting x-rays. Except that they target the x-ray more acutely in radiation treatment.

All I have to day is lie still for about 10-15 minutes, and then it's over. After I first lie down on the table, they adjust me. I just have to lay there like a doll and they move me around until I'm in the right position. Believe it or not, they adjust you in pretty minute detail.

After 2-3 weeks, I might start noticing some skin irritation and/or some minor fatigue (nothing like chemo) as the radiation builds in my body. But, until then, I probably won't notice anything.

I have to wear a special deodorant that doesn't have aluminum in it. I was surprised to learn the aluminum chloride and aluminum chlorohydrate are the main active ingredient in most antiperspirants. They also have some concern about scented deodorants that might contain alcohol in them as they can irritate the skin. Fortunately, I've been using an organic brand that doesn't contain either of those things. I took it in with me for my Friday treatment and they said that I could continue using it.

I'm not allowed to use any lotions on my skin that they don't provide for me. They told me that when my skin starts getting irritated, they'll give me some aloe-based lotions, but they I shouldn't use any of my own lotions. This is due to concerns similar to those about the deodorant.

Also, I wanted to let you know that I've been working on something new for the blog. I'm not going to give away what it is yet, but I'll be announcing something in the next few weeks.

It's taking up a lot of my free time (in addition to wrapping up principal photography on my film), so I may not be posting quite as often. But that is only temporary. I already know that I'm going to be swamped for the next couple of weeks, so my posting will be infrequent during that time. Once we wrap production on the film and start editing, it should free up a lot of time for me.

I'll be getting radiation daily (Monday through Friday) for the next 5 - 7 weeks. I get it everyday at the same time, late morning. Each Monday, I'll also be meeting with my radiation oncologist. He will meet with me each week to check the status of my skin, to check my weight, and to see how I'm feeling. They have to monitor your weight because a significant increase or decrease in weight can actually affect your treatment. Gaining or losing weight affects the density of your tissue (how much fatty tissue is in a certain region) and can cause your skin surface to decrease or expand. All of this means that the radiation might absorb differently or shift in location. Since this is precision treatment, they really have to watch all that stuff.

They also will watch for skin irritation and, if it begins, they'll provide me with lotion. As my treatment progresses, they also watch to determine how much radiation my skin can take before they have to stop treatment. If my skin starts getting irritated, it will basically look and feel like a sunburn. And, like a sunburn, your skin can only take so much before the damage becomes permanent (scarring, etc.). So, they watch for that to help them determine when to stop treatment.

Okay, that's all I've got for now. I'll try to time my posts after my Monday doctor's appointment so that I can update you with any new information I get. The next time I'm scheduled to see either my oncologist or my plastic surgeon is October 18, which will put me right around 5 weeks of radiation. That's perfect timing as I will likely know how close I am to the end of radiation. At that time, my oncologist will arrange for me to be rescanned (CT scan and bone scan) to determine the next phase of cancer treatment. I expect that the only thing my plastic surgeon will do is add more fluid to the implant expander that is currently my right breast.

Like, I said, stay tuned for a new blog feature in the next few weeks.

Tattoo You... er, Me

I have a lot to catch up on, so this might be a long post.

First of all, I met with my radiation doctor last week. I really like my doctor. He was knowledgeable about ibc and explained the treatment in terms of my specific disease. That was extremely helpful.

If you don't know what radiation is exactly, you're not alone. I didn't either. It turns out that radiation is X-ray beams. It is extremely targeted and the treatment is customized for each person. He spent quite a bit of time with me during my appointment explaining every aspect of the treatment.

The first thing they do is a CT scan (with no contrast) to determine exactly where everything is. They identify where all the lymph nodes surrounding the incision area are, where the incision is, where the organs are, etc. Then, they determine the radiation pattern and mark you for treatment. First, they mark you with permanent marker and then they tattoo you. The tattoos are exactly one dot. I actually asked if I could get them in the shape of little hearts (so that the radiation had to travel through love before it entered my body), but they can't do that. The precision of the treatment requires that they have to be exactly one dot.

I had the CT scan and got the tattoos the day after my first appointment with my doctor. They tattooed five spots on me: two on my left side, two in the area over my left breast, and one on my right side. I've spent the last ten years contemplating a tattoo, and when I finally get one, it's for radiation. It hurt!! Holy cow. If one dot hurt that much, I can't imagine getting a whole tattoo. But now, at least, I can say I have one even if I never get another one. I'm planning to tell people that I have a tattoo of a constellation.

When they do the marking and tattooing, they also position you exactly the way you'll need to positioned for treatment. Then, they have to recreate that position for every single treatment. To do that, they take a bunch of pictures of you so that whoever is doing your treatment knows exactly how you are positioned. During my first appointment with the doctor, they also took a photo of me for their files. Before they do any treatment, they compare you to your photo to make sure they are administering the right treatment to the right person.

I start radiation on Wednesday of this week. The radiation itself lasts about 10 minutes. The side effects that I'll notice are skin irritation and fatigue. The skin irritation probably won't show up for about 2-3 weeks. That may also affect how long I have treatment. The maximum treatment is 7 weeks. But, my treatment is designed to treat a lot of the skin cells too, so it might be shorter.

Since they are treating my left breast, they have to be careful not to hit the heart or lungs. This means that they have to design the treatment beams to go in at more of an angle. As a result, the radiation will go across the skin and breast tissue above the heart and lungs so that they don't absorb the radiation. Because that wouldn't be good. By angling the radiation in this way, my skin will absorb a lot more radiation than it normally would. But this is good because ibc affects the skin's lymphatic system, so the skin needs to be treated with extra radiation anyway.

While we want to treat the skin with extra radiation, we still don't want my skin to start breaking down. So, my doctor will monitor how my skin is reacting to the radiation, and he may stop it after 5 1/2 weeks if it looks like it can't take anymore. So, my radiation will last somewhere between 5 1/2 and 7 weeks.

In a previous post, I mentioned that my doctor was following up on the pathology report to determine if the cancer found in my lymph nodes was still active or not. I spoke with my doctor and learned the outcome of that as well. While they did find plenty of necrotic (dead) cancer cells in both my breast tissue and my lymph nodes, they also found viable (active) cancer cells. It was disappointing to learn that, but it didn't come as any big surprise. So, it looks like I will definitely be getting more chemo. However, they will also be treating those areas with radiation. So, hopefully between the radiation and the additional chemo, we'll knock everything out!

I also mentioned that I would have some fatigue with radiation. The good news is that it won't be anything close to the fatigue I experienced with chemotherapy. And, my doctor told me that if I stay active, it will affect me less. That's not surprising. I stayed pretty active during chemo and, although I did experience some fatigue, my energy stayed pretty high throughout.

My last bit of news is that I got new breasts today! I picked up my prostheses at lunch today. They look and feel great. If you didn't already know I had a mastectomy, you wouldn't know by looking at me. The cool thing is that they also feel really natural. The weight is so natural that I don't feel like I'm wearing a prosthesis. They really just feel like my own breasts until I actually touch them.

I've had a bit of fun with it today. As I told one of my male friends, "You don't get to say this very often in a lifetime, but check out my new breasts!" I told someone else that I went out and picked up some new breasts at lunch.

I have to tell you that I've been perfectly fine walking around without anything. Although it made me pretty self-conscious in the beginning, I was getting used to it. But, it feels good to have breasts again... even if they are just part-time breasts. Between the baldness and the flat chest, I wasn't feeling very feminine. This made me feel feminine again. And I have to add that my flat chest isn't the flat chest of someone with very small breasts, or even the flat chest of a guy. I had all the breast tissue removed, so it was very nearly concave (I can actually feel the edges of where they took the breast tissue under the skin). So, it feels good to have something there again.

This morning, the woman came from cleaning service that my friends at work hired for me. I can't tell you how excited I was to get my house cleaned. When I got home this afternoon, everything was shiny and clean. That's such a nice feeling. And the cool thing is I still have 6 hours of cleaning time left on my gift certificate!

Edited to add: I wrote this yesterday, but accidentally saved it as a draft instead of publishing it to my blog. I discovered it when I went out to see if anyone had commented on it today and it wasn't there. Sorry about that.

Update

I'm overdue for a post. I'm sorry to those of you who may have been wondering after my well-being since my last post. I continue to do really, really well. I've returned to work, and we've resumed shooting of my film.

In addition, I've decided to paint my bedroom. It's a long story, but basically I've been wanting to paint it for a while. We're using it as a set on the film, so I need to get it done. I've been painting all week, and I'm still not finished! It's kind of hard to paint because it has a lot of corners and doors and trim that I have to paint around. I also don't have space to move my furniture out of there, so everything is shoved into the middle of the room, which doesn't leave me a lot of room on the outside to get around.

Anyway, the point of telling you all of this is to demonstrate how much I've recovered since my surgery. The first couple of weeks after surgery, I could barely reach around and fasten the seat belt in a car. And, now, I'm painting my bedroom (ceiling included). I even installed a new ceiling fan the other day. So, yeah, I'm doing well.

I went the other day and was fitted for a mastectomy bra and prosthesis. My insurance covers two bras and one prosthesis for each breast. On the left side, I'll get a full prosthesis. Those things are really amazing these days. The one I'm getting is really soft and comfortable. The woman helping me said that "it passes the hug test." So, I guess when people hug you, they don't really notice that it's not a real breast. Or at the very least, it doesn't feel hard.

Which is funny, because with the implant expander on the right side, my right breast totally feels hard. But that brings me to what I'll get on the right side. I'll get a "shell." This is not a full breast, but a thin shell (they have different thicknesses depending on how much you need to fill out) that fits over an existing breast (or, more specifically, partial breast).

The bra has pockets in the cups where you can slide the prostheses in. That holds them in place. So, when you take off your bra, you take off your breasts. That could definitely come in handy sometimes!!

I'm actually really looking forward to getting the bra and prostheses. I've been getting out and about with my new flat chest, but I still feel a little self-conscious about it... mostly because my right side has the expander while my left side has nothing. It makes me feel really lop-sided. I don't even know if other people notice it, but I always feel a bit like everyone is staring. I mean, people have been staring ever since I lost my hair. So people are staring. But now I feel even more self-conscious when they do.

The cool thing is that my hair is starting to come back in. The ends are super fine, but it's starting to resume its normal thickness as it grows in. The result is that my hair is super soft. People love to pet my head because it's so soft. I also like that you can now see the dark hair on my head. Before, I had a little hair, but there was so little of it that it didn't actually darken my head. I just looked like I had blonde hair. But now, it's dark again. And, by the looks of it, I'm not going to have anymore gray hairs than I did before. So, that's good.

I'm going to be sad to lose it again this winter though. Late last week, I met with my doctor to discuss the metastasis they found in my lymph nodes. As I suspected, they are going to treat my lymph nodes with radiation when they do the radiation on my breast. But, he also suggested that I will probably need more chemotherapy.

After I've completed radiation, they are going to re-stage me. This is actually something that they usually don't do. Once you've been staged the first time, they base all treatment from the initial staging data. Staging is when they scan your body for cancer. This consists of a bone scan and a CT scan. At least, that's what they did for me. I'm sure there are a number of different tests depending on where they found the cancer.

Based on what they find in the scans, they determine what stage cancer you are in. There are four stages of cancer. The fourth stage is when your cancer has metastisized. This means that the cancer has spread past its original site and the local lymph nodes. So, metastasis in my lymph nodes doesn't necessarily mean that I'm stage 4. I would only be diagnosed as stage 4 if it has spread beyond my lymph nodes.

Like I said, usually they don't restage you. This is because it is usually not helpful to do so, and it doesn't affect treatment. However, my doctor felt that my case is the exception to this rule. The reason for this is that the cancer in my lymph nodes should have responded to the same chemotherapy that I received for my breast cancer. The fact that it didn't respond as well makes him wonder if it is the same form of cancer they treated initially. I should add here that when they removed my breast, they did find a mass. What does that mean? That means that I had another type of cancer in addition to the ibc. This is not unusual because ibc often accompanies other types of breast cancer. So, given this set of circumstances, they want to restage me to determine if they should follow a different course of treatment. And that's where the chemo comes in.

I really won't know more about that until after my radiation is complete. I'll meet with my doctor again to set up the staging tests in mid-October. That's when I'll start learning more about what my post-radiation treatment will be. In the meantime, I meet with my radiologist for the first time next week

Okay, that's all I have for now. I'll post again after I've met with my radiologist.