Self-discovery

I realized yesterday that I never gave any background on this blog about how I discovered the cancer. I thought it was time because you can learn from my experience.

At the end of January, just before my period started, I noticed in the shower one morning that my left breast felt denser and thicker than my right breast. In fact, it felt like it might have been slightly swollen. I checked myself in the mirror, but my left side has always been bigger than my right side, so it was hard to see any major difference. I did a self-exam and didn't notice anything that felt like a lump. In absence of a lump, I figured it was something else.

I speculated that perhaps I was swollen from my impending period. I thought it was odd that both breasts weren't swollen, but there was no lump, so I wasn't concerned. It also occurred to me that I had turned 40 recently, and though it was a bit early, maybe this was an early sign of an impending menopause. Or maybe I'm just getting older.

I waited a couple of weeks for my period to pass and even noticed that it did seem less swollen. It didn't completely go away, but it seemed to improve. So I figured, whatever it was, was going away. Again, in absence of a lump, I wasn't concerned.

Within a couple of weeks, I noticed that it really wasn't going away. In fact, it might have gotten a little worse. This is when I decided to take action. The last time I had seen my doctor, not too long before I discovered the change, he had given me a recquisition for a mammogram. I am 40, after all. It was time. So, I knew that if I made another appointment with my doctor, he would just make me get the mammogram. So, I made an appointment for the mammogram, and I scheduled a follow-up appointment with my doctor the following week. I never made it to that follow-up appointment.

When I called and scheduled the mammogram, I explained to the woman on the phone the symptoms I had noticed. When I went in for my mammogram on Tuesday, I described the symptoms again. They asked if I had told the person scheduling me because I was just scheduled for a screening when I should have been scheduled for diagnostics. Unfortunately, the diagnostic team had already left for the day, so they could only do the mammography that day. The tech did a breast exam and then went and got someone for a second opinion. Interestingly enough, they seemed more concerned with something on my right breast than my left breast. The tech reassured me that they often pull in someone else for a second opinion and that it doesn't mean anything. But as I waited alone in the room, I kind of sensed that this was going to be the beginning of something big. I didn't know what yet, but I knew something was wrong with me. I was hoping someone was going to be able to prescribe some antibiotics and it would all go away. But, I had that feeling inside that it was more than that.

Anyway, the next day they called me and asked me to come in for diagnostic tests the following Friday. The diagnostic test they did was an ultrasound. They looked at the right breast first and concluded that they were not concerned about whatever they found there and would look again in 4-6 months. I had gone home after the mammogram and felt it. I could feel something, but I don't know what it was. Was it a lump? Was it another thickening that was just starting? I couldn't tell, but I could see why they noticed it.

When they looked at the left breast, they found a lot of "calcifications." There were none in my right breast. They noticed some swelling of the skin and breast tissue. Again, they didn't find any in my right breast. She kept telling me that these symptoms can lead to a number of outcomes, but the thing that concerned them was that they didn't appear on the right side. From this, I concluded that the other, non-cancer things it could be were more likely when they appeared in both breasts.

They also noticed a couple of "prominent" lymph nodes, but the doctor wasn't that concerned about them. Whatever she expected to see there in cases of cancer, apparently wasn't there. At any rate, she told me that she couldn't diagnose without a biopsy. They gave me a list of surgeons they recommend and told me to select one with my doctor's recommendation. I still had my follow-up appointment scheduled with my doctor the following Monday, so I had planned to discuss it with him then. When I mentioned this to the tech, however, she asked me if I wanted to wait that long. In light of that question, I called my doctor's office as soon as I returned to work. I had my biopsy scheduled (or so I thought) before the end of the day. I had also cancelled my follow-up appointment with my doctor until I knew more.

On the following Tuesday, I thought I was going to get a biopsy. (By the way, since I didn't have a lump to remove, they explained that the biopsy would just remove some breast tissue and skin cells.) I thought it was odd that no one had given me any pre-surgery instructions, but I thought that perhaps I was going to receive a needle biopsy and that I wouldn't need to do anything special. It turns out that this was just a consultation with the surgeon. It really angered me at the time. I knew I was getting a biopsy because they suspected cancer. The fact that a doctor had asked for a biopsy only to have a surgeon spend 10 minutes with me to confirm what I already knew ("You need a biopsy.") was really frustrating. I've since come to terms with this. I understand that without his examining me first, how would he know where to cut. And, I'm sure it's a CYA meeting to make sure that someone didn't schedule an unnecessary surgery.

However, the most frustrating thing was that my biopsy was scheduled almost a week later. I was starting to get panicky because I felt like a lot of time was slipping by, and I still didn't know anything. If this was cancer, then I didn't feel like I had time to waste. Part of me felt like if a few days actually made a difference, then they wouldn't make me wait. But the other part of me felt like no one was understanding the urgency of this. I didn't push the issue, though I thought about it. Instead, I decided to use the time to educate myself.

I stayed away from anecdotal sites, but I did go to some medical sites to see what else this could possibly be. I knew that it could be cancer. But I also knew that just about anything that could be wrong with your breast, no matter how benign, has the same symptoms as cancer. So, I wanted to learn what some of those benign things could be, so I could focus on something besides cancer. (I completely believe that positive focus makes all the difference in the world.)

However, when I looked at all my symptoms, I kept coming back to something called "inflammatory breast cancer." My symptoms were identical, though I didn't have them all. So, I started looking for the benign issues that had the same symptoms. The only one I found was mastitis, which occurs most frequently in nursing mothers. Hmmm. I tried to convince myself that maybe early menopause could cause changes in my milk development that would result in something like mastitis. It was a stretch, but the alternative was ibc.

I learned enough about ibc then to know that it was aggressive and that days do make a difference. This frustrated me all the more, but by the time I learned this, my biopsy was a couple of days away. I waited it out. The days after my biopsy were the hardest. I knew that my diagnosis was impending, but I had no idea what the outcome would be. And I was terrified that the outcome would be this aggressive form of cancer that, until fairly recently, had been 100% fatal. I had already dealt with the idea that if I had cancer I would most likely lose my hair and quite possibly lose my breast, but I had a hard time coping with the idea of loss of life.

Three days after my biopsy (and nearly three weeks after my initial mammogram), I was diagnosed with inflammatory breast cancer. I wasn't surprised. In fact, when he said the words, I realized I had been expecting them.

At that moment, I began to wish I had been more aggressive and told the women's center, "That's not good enough. I need to get tested earlier." I wished I had done the same when my biopsy was scheduled a week later than I thought. Fortunately, for me, it turned out okay. My cancer hasn't spread. But, for some, being more aggressive will be critical. Don't be afraid to be aggressive. Doctors are human after all. This is your body and your well-being. It's okay for you to be aggressive. And, believe it or not, your doctors will respond if you insist.

Fortunately, my first appointment with an oncologist was only a few days later. Prior to the appointment, I made sure I really educated myself on this form of cancer. I learned that they have figured out how to treat it so that it doesn't have to be fatal... particularly when caught early. I lined up a number of questions for my oncologist. I also went in prepared to change doctors if my oncologist had no experience with ibc or wasn't prepared to treat it as aggressively as I knew it needed.

I'll admit that prior to my appointment with my oncologist, I still had concerns. However, since the moment I left his office that day, everything changed. I've been completely at peace with this and have had no fear. He had experience with ibc. And, he was so aggressive in treating it that I started chemo the next day. He also spent nearly two hours with me going over all the treatment options, the pros and cons, his recommendations (and why), and answering all my questions. He never once made me feel rushed or that he had anywhere else to be. And, he never forced any decision on me. The Universe definitely sent me to the right doctor.

I am no longer afraid of losing my life to this cancer, because I won't. I knew that the moment I walked out of my oncologist's office. Not because of anything he said, but because I knew that's not my story. My story is how to overcome this. My story is to teach others about this, to raise awareness of ibc, and to let all women know that cancer doesn't have to be as scary as it is when we know nothing about it. Breast cancer is scary, there's no doubt about that. However, it is stuff that we don't know about cancer that is far more scary than the stuff we do know. So, my story is to be shared... to shed light on those unknown dark corners so that women everywhere can see that there are no monsters in the corner. And, while there is something to fight, we have the strength within us to overcome it.

So, the title for this entry is not only about discovering my cancer, but it also about discovering myself in the process. Yes, I have a lot of inner strength. But so does every woman reading this blog. The trick is to recognize it and embrace it. Because, I promise you, when you connect to that strength, and love it, you can do anything.

And the Winner Is...

Thanks, everyone, for your votes on which logo you like best. Unfortunately, for logistical reasons, I have to overrule you.

Based on everyone's votes, I made myself some mailing labels with the "D" version of the logo. Unfortunately, the printed version of the logo doesn't look nearly as good as the online version. Plus, the drop shadows don't scale very well. So at smaller sizes, the entire logo looks fuzzy and out-of-focus. And, besides, I think the drop shadows will be really hard to replicate when I have this logo tatooed on my bald head.

Kidding... that last one was a joke. But the rest is true. So, I decided to go with "A" after all. But, I really appreciate all the input everyone gave me, and I hope my fellow Race for the Cure walkers like the logo I chose anyway.

[Click on the logo to see a larger version.]

Mail Call

Before my mom died and my best friend got email, I used to look forward to getting my mail everyday. I could usually count on a card, letter or newspaper clipping (thanks, Mom) at least a couple of times a week. When Cathy and I started exchanging email, it seriously put a damper on our card and letter exchange. Cathy is still better at it than I am (and she always was), but for the past few years, my mail box contained only bills and junk mail except around major holidays.

However, I realized yesterday that I'm starting to look forward to the mail again. (Another gift of cancer.) For the past few weeks, I've started receiving cards pretty regularly from family and friends. I can usually count on 2-3 cards a week. And, Cathy sends me a new care package every week. She says she's having as much fun putting them together as I am receiving them!

The first week, it was just a package of Oreos. She wrote in the enclosed card, "Just thought I'd send some love—encased in chocolate with a sweet, creamy filling..." This week, I could smell the lavendar soap she enclosed before I even opened the package. It left me wondering if my mail carrier likes the scent of lavendar. I hope so.

My favorite cards are the funny ones... such as the one my friend Carla sent. It has a photo on the front showing a bull's rear with gigantic testicles hanging down between his back legs. (I wanted to scan it, but don't have access to a scanner right now.) To explain the photo (which Carla took, being the talented photographer she is), she wrote inside, "This photo reminded me that you've got some 'big balls' going through this choosing to gather your gifts!" Thanks, Carla. That meant a lot.

The "Get Well" cards mean a lot too, but it's always a little odd to get them since I don't actually feel sick. With the exception of the few days around chemo, I feel completely normal. When I'm feeling normal, it's pretty surreal to even think of myself as having cancer. It sure doesn't feel like what I'd thought it feel like... mostly because I thought it would feel different than the way I normally feel. It doesn't. And, even, on chemo days, I don't feel sick. I feel tired. I need lots of rest, but the anti-nausea meds ensure that I never feel sick.

So, all of this is to say, I love the cards... keep 'em coming! However, I'm going to request that when you shop for cards, look for cards that are funny, happy, positive, and aren't focused on being sick, but on being well. I think that half the reason that I'm able to stay as positive as I am and feel as good as I do is that I don't focus on being sick. I focus on being well. So, send me cards I can laugh or smile at because I'm not living in dark times. I'm living in one of the most incredible, rewarding times of my life. And those aren't just empty words. I mean them with every inch of my soul.

Bald... and Loving It!

I got my head shaved today. Well, more like buzzed than shaved, but it's pretty darned close... as you can see. I do have video of the entire process and will post it in the next few days. Deb was amazing and kept giving me cool little mohawks throughout the process.

I have to admit that I had a little concern about how it was going to look when I was done. But now that it's done, I kind of love it. I thought I might end up wearing hats all the time, but my friends will see me bald more than not. It's too comfortable.

Right now, I still have enough of a buzz to get that super soft fuzzy feeling that I love on a nearly bald head. It's fun to play with!! However, as you can probably see from the photo, it's going to keep coming out. And, now that it's short, I think that won't be such a big pain as it was when it was longer. And, already, my hair isn't as uncomfortable. It had started to feel like a million tiny needles were stuck in my head, but now it feels comfortable again.

Well, I just wanted to share my new 'do, but now I need to get some rest.

[Click on the photo to see a larger version.]

Branding my Support

I need some help from you all.

I had decided to create a logo t-shirt for everyone that is walking with/for me in the 5K Race for the Cure Walk in June. Then, I thought that some people might want it even if they're not walking with me. So, I've created a "Tonua's Circle of Support" logo. But, this is where I need your help. I've created four different versions (with minor differences) of this logo. So, I thought I would throw it out there to you and let you tell me if (a) you like the logo idea and (b) which variation you prefer.

(Can you tell I'm in marketing? Not only do I create a logo for my support group, but then I do market research on which one resonates best with my target market!)

Thanks from the Bottom of my Watch

I am getting the super cool pink ribbon watch that I blogged about earlier. While I was still undecided, my aunt and uncle kindly sent me a check to cover the cost of the watch and to donate the remainder to the Race for the Cure walk. :)

I ordered it this morning, so I should have it in about a week. I'm pretty excited about it.

And, I just want to thank my Aunt Barbara and Uncle Max for this generous gift that is so precious to me.

I "Heart" Boobs

Last night, while at a jewelry party hosted by a friend, I met another women who had recently been diagnosed with breast cancer. During the course of our conversation, she and her daughter gave me this super cool button. They are using these buttons to raise the funds required for her daughter to do the Komen 3-day Race for the Cure Walk.

I immediately put on the button and wore it throughout the evening and at the next event I attended. So many people were interested in obtaining one of these buttons, I thought I'd put a link to CafePress store where you can buy them:

http://www.cafepress.com/ifightcancer

I'm not sure if the woman and her daughter actually run this particular CafePress store, or if they just ordered the buttons so they could sell them to raise funds. Either way, they are pretty cool buttons.

Also, if you're interested in other breast cancer awareness stuff on CafePress, you can find it here:

http://www.cafepress.com/shop/shop.aspx?topic=breastcancerawareness

Frog Photo Posted

I finally posted a photo of the adorable frog that arrived on my doorstep a few days ago. Scroll down the page to see it, or click here to view it.

Trifecta of Support

Last night, after resting up from my chemo day, I attended a breast cancer support group. I cannot recommend this highly enough. This group meets once a month and I knew that I didn't want towait a month to attend... even if it meant having to attend on the same day I received chemo.

It is important that the women and what they shared remain confidential, so I won't share any details... only my personal experience. I want to share this because I think that anyone going through this should seek out a support group.

There are three types (so far) of support that I'm receiving during this experience. The first is what I've shared the most about... the support of my friends and family. They are the ones that go with me to every appointment, drive me around when I'm not able to drive myself, and bring me dinner when I'm too tired to cook it myself. This is the support that occasionally makes you cry (joyfully) because you realize how much you are truly loved. There's also the medical professionals that are guiding you through your recovery. These people are an important part of your life for obvious reasons. Having a terrific medical staff supporting you is a very good thing. It allows you to trust in them and their methods and feel confident that you are going to recover.

You could conceivably get through your entire recovery with only these two methods of support and be fine. But, I think the third area of support, that of women who have been through this already, is critical. I learned so much from these women, who asked me questions about my illness that I never thought to ask myself. They made suggestions that I never would have thought of. They were well informed about each of the drugs, the various therapies, the various stages, etc. And they had an amazingly positive energy as a group. I walked in feeling tired and walked out feeling energized. I know that I made new friends last night. And, in doing that, I've ensured that I'm not alone through any of this. I have made friends that have gone through the same thing that I am.

Don't get me wrong. I already have friends that have gone through this, or something close to it. I spoke to one of them for nearly two hours on the phone the other evening. It was after that conversation that I realized how important it would be for me to surround myself with more women like her... hence the support group.

I also intend to get more active in this area. Last night, I signed up to indicate my interest in participating in a community outreach/education thing that happens this fall. I also shared with the women my plan to do the documentary and they were overwhelmingly supportive. I also invited anyone who is interested in sharing their story to contact me. I would really like to make this documentary about more than just me.

Good News!!

I got really good news today that I must share with all of you. I had a consultation with my doctor's office (technically, with his RN Pracitioner) before my chemo today. The results from my bone scan and CAT scans were in and it looks like my cancer is contained and hasn't spread anywhere.

As you all know, this is great news. This means that we can concentrate the treatment on the breast cancer and don't have to worry about other types of cancer that might need different treatments. Wow, what a relief!

Anyway, I just wanted to share this with all of you so that you can breath a sigh of relief with me. :)

And, now, the afternoon nap....

4:30 AM

That's what time I woke up this morning... at which time I was unable to return to sleep.

I tried. Believe me, I tried. After an hour of tossing and turning, I gave it up as a lost cause. During that time, I began noticing a persistent headache and slight queasiness. I tried to ignore it, but it wasn't to be ignored.

This was not the effect of chemotherapy finally rearing its ugly head. Nor was this some precursor to illness that my decreasing number of white blood cells were unable to fight off. No, this was something easily treatable, but to treat it, I had to resign myself to giving up on sleep for the night.

At 5:30, I finally got up... and made myself some breakfast. I was hungry. As I lay in bed trying to stave off these obvious feelings of hunger, I began thinking about why I was so hungry. (Thinking... the death knell of sleep.) I realized that I had eaten a pretty light lunch yesterday (although I felt quite stuffed afterwards) and had eaten an equally light dinner.

These lighter meals definitely are the direct result of chemotherapy. My appetite has decreased significantly. I've been trying to move to the "grazing" method of eating... so that I don't eat very much in one sitting, but I eat all day instead. This is actually supposed to be healthier for you anyway, and it works well with my reduced appetite. It's hard to break the habit of eating only three meals a day, though. We're trained that "in-between meal snacks are bad." But, I've gathered a whole lot of healthy snacks for the occasion. I have fruit, yogurt, cottage cheese, and not a single cookie, chip, or chocolate candy in the place. Last night, I actually intended to have some yogurt, but I was on the phone most of the evening and never had a chance.

I can't help but wonder this morning if that yogurt would have provided me with another couple of hours of sleep. I have to be feeling pretty hungry for it to wake me up. In the past, my method for dealing with headaches and feelings of queasiness from such illnesses as the flu is to sleep through them. I'm a good sleeper. So, it was really disappointing to not be able to sleep last night. Particularly since I'm having chemo today and know that my body could really use the rest in preparation.

I'm not nervous about the chemo. The treatment session itself is pretty easy. It's the two days following chemo that are rough... mostly due to energy drain. As anyone who knows me can attest, I'm usually chock-full of energy. I've usually got several big projects going on in my life at any given time (like writing/directing/producing a film while undergoing treatment for cancer). So, when I'm devoid of energy, it's a bit of a challenge for me. I'm not used to it.

The plus side of the lack of energy is that it's a good excuse for afternoon naps. I've always enjoyed a good afternoon nap... especially if I can sleep in the sunshine coming in from a nearby window. There's something really comforting about being wrapped in the sleepy warmth of sunshine.

So, I've got that going for me... today, I can look forward to an afternoon nap. :)

Hair Loss

And, so, it has begun. I noticed it last night.

I was plucking some facial hair... you know the kind. We all have it... that super long, fine hair that appears out of nowhere on a chin or cheek that just shouldn't be there. You pluck it and then you don't see it again for months. But when it does reappear, it seems to grow an inch overnight!

When I plucked said hair, I noticed that it slid right out with no pain. Hmmm. I figured this was a sign of hair loss, so I slid my hand through my hair and one of my gray hairs came out without me feeling it at all. And this is particularly strange because (a) I don't have many gray hairs, and (b) the few times I've plucked them,* they always hurt.

*I hate the idea of plucking my gray hairs and I generally don't do it. I worked hard for those gray hairs... I'm not going to pluck them!! However, I did have a hairstylist (once)—to whom I never returned—that plucked three gray hairs from my head... without even asking.

So, then I tried an experiment and pinched a little bit of hair between my fingers and pulled. I felt the pain of plucking a couple of hairs, but when I looked at my hand, I was holding several more than a couple of hairs. At first it startled it me, just because I was holding more hair than I felt get pulled. (That was weird, let me tell you.) But, then I remembered that this is supposed to happen, and I got over it.

This morning, I didn't wake up to a bunch of hair on my pillow, but when I was styling my hair, a lot more hair than usual ended up in my brush and on the counter. Now, I don't wash my hair every day because it dries it out too much, so I didn't wash my hair today. However, it should be interesting when I wash my hair tomorrow. I'm going to have to put a drain catcher in so I don't clog my shower drain!! I mean, it's bad enough keeping that drain clear when I'm not losing hair.

So, look for a new bald me within the next week. I'm going to give it a few days to see how much hair I start losing at once. But when it starts really thinning out, I will definitely be getting shaved.

I've been planning to start posting video to this site. I'll record getting my head shaved and make that my first post! Stay tuned to my blog for more details.

A Fairy Frog Princess

Actually, it's more like a guardian angel frog, but I liked the way "Fairy Frog Princess" sounded.

Today, I received the cutest guardian angel frog from someone in my family. I only know that it's from someone in my family because the post office mail code showed that it was mailed from a city in which the only people I know are family. And I only know of two family households there. There may be more, but I don't know of them. Unfortunately, I exchange email with these family members more than snail mail, so I don't immediately recognize the handwriting either.

At any rate, it's super cute (I'll post a photo soon), and I just wanted to say thank you to whoever sent it. :)

I love it!

Pink & White M&Ms

My aunt sent this to me today:

Pink & White M&Ms: M&Ms with a Purpose

Pass this on to all of your friends. There are many women out there who have breast cancer. Lets do all we can to support this cause.

The maker of M&M candies has teamed up with the Susan G. Komen Breast Cancer Foundation to raise funds through the sale of their new "pink & white" M&M candies.

For each 8-ounce bag of the special candies sold, the makers of M&M (Masterfoods) will donate 50 cents to the foundation. The next time you want a treat, please pick up a bag (now sold in stores nationwide) - you will be donating to a great cause and satisfying your sweet tooth. Just think...If each of us buy one bag or two.... how much will be donated. Buy a bag for a friend...........

Please pass on to all your family and friends. -- Thank you.

The first thing I do when I see something like this is to check Snopes.com to see if it's real or not. [For the uninitiated, Snopes reports on urban legends that appear on the internet. Search on any keywords from the email you want to investigate, and it will return any reports that it has on that subject.]

I am happy to report that this is actually true [read the Snopes article], so I sent it to many of my friends. However, upon closer investigation, I discovered that this is an annual campaign that they started in 2004. At the end of each year—traditionally in the September – December timeframe—they run a breast cancer campaign. So, watch for it this fall in a grocery store near you.

5 Hours in the Hospital? Or a Sci-fi Movie?

Today, I spent 5 hours at the hospital having tests run. But the tests were so cool, that it was like being in a sci-fi film... or the future. The future is now!

I know the saying isn't original, and even me saying it about this particular experience isn't original because I said it to Mike at the hospital... but I thought it beared repeating.

Here's a rundown of my day...

I arrive at the hospital imaging center at 11:00 and check-in for my "bone scan injection." Sounds scary, doesn't it? That's what I thought too. I'm picturing a giant, fat needle that they have to poke into my spine. Yikes!!!

After about a 45-minute wait, they take me back to a room and.... give me an IV. It was pretty simple and painless, actually. All the techs today were totally cool and let Mike film just about everything. So, Mike got some great footage of all the radioactive warnings around and of them administering the IV in which, yes, they injected me with radioactive material. That's to make my bones glow on the bone scan. More on that later.

Afterwards, we headed over to the Reichert Center (on the other side of the hospital campus) for my CAT scan. They give me banana-flavored barium sulfate to drink. It was about the consistency of Elmer's glue—and I imagine that if you added banana flavoring to Elmer's glue, it probably tasted pretty similar to this too. It was cold, so that helped, and it only started getting terrible about halfway through... or if you thought about it. And I don't recommend it warm. Although, you don't have a choice. There's a certain amount you have to save until they call you in. And you have to wait an hour after you drink the first part before they can call you in. So... warm banana barium shake... mmmm... NOT.

Mike actually couldn't film the CAT scan because he couldn't be in the room while it was happening... for his own safety. In fact, I was the only person in the room during the CAT scan... something to think about. But, they did let him come in afterwards and film the equipment and interview me in the room. One of the techs was also happy to pitch in and offer information on camera... which was really cool.

The CAT scan itself was super fast and easy. First, they hooked me up to an IV. Then, they ran me through this machine twice while I held my breath each time. It wasn't even long enough for it to become hard to hold my breath. Then, they turned on something in the machine that start rotating around me super fast. This was for "contrasting" and caused me to heat up from the inside out. It literally felt like I was in a microwave! It also felt like I was peeing my pants (even though I wasn't), but, thankfully, they warned me about that and I could just ignore it. For about a minute, there was a weird metallic flavor in my mouth, but nothing intolerable. While this was all happening, they ran me through the machine two more times, and then I was done. The whole thing took less than 10 minutes.

After that, we grabbed a quick lunch at Wendy's and watched this guy who looked homeless, but drove a pretty nice car. When we mentioned something to the staff about him, they referred to him as "The Potato Guy." There's a story there, and I'll tell it, but not this post. I'll save it for another time.

Then, we went back to the hospital for the final test of the day... the one where they took the glowing image of my skeleton. Mike was able to film this, so we have some pretty cool footage of my skeleton for the documentary! Awesome!! That took about 20 minutes during which I had to hold perfectly still. Anyone who knows me probably realizes that this was the most challenging part of my entire day.

We walked out of the hospital at 4:00. It was a long day, but a really interesting one too. Mike kept me laughing all day (as he will), so it was also a pretty fun day.

So, shout out to Mike:

Thanks, Mike. It was super cool to have you here with me today. Thanks for keeping it fun. :)

Contamination

This isn't about me contaminating you; it's about you contaminating me.

I went in and had blood drawn yesterday, and today, I got a phone call from the nurse telling me that my white blood cell count is down. That means if you have the sniffles, a cough, a runny nose, wierd unknown stuff running out of your eyeballs (or other orifices that I shall not mention), the plague, or a raging case of the measles, you should probably avoid me for the next few days. Or, more accurately, I should avoid you. At least until I hear otherwise.

Sorry about that. But I like not being sick. It's really, really good.

Race for the Cure

I sent this out in email, but wanted to repost it here in case I missed anyone:

On June 10, I'm going to be taking part in the Susan G. Komen Breast Cancer Foundation Race for the Cure. I'm doing a 5K Walk (there is also a 1K Walk, a 5K Race, and, at a different time, a 3-day walk).

If you would like to sponsor me in this walk, you can make donations at the following location:

http://www.active.com/donate/detroitrace4thecure/kdTBrown

If you'd like to participate in the walk with me, sign up here:

http://www.active.com/register/index.cfm?event_id=1299174

Or if you'd like to find out about a race/walk closer to your area, visit:

http://www.komen.org/Events/find_race.aspx?nodeID=356

As I face the challenge before me of fighting and ridding my body of this disease, I realize how lucky I am. A decade ago, my particular disease was considered fatal. Not so today. And much of the credit for that goes to research such as that conducted by teh Susan G. Komen Foundation. I hope you donate something, even $10, so that future generations can have it even easier than I do.

Brain Meltdown

Days like today are the most frustrating. For whatever reason, my brain won't focus. I sit staring at my computer at work trying to fixate my mind on something. Instead, my brain seems to be floating out on its own, no tether or anchor holding it in place. Even just writing this is a major chore as I try to find the words to explain what I'm experiencing. And, worse, as I try to stay focused on the task of writing. This short post is all I can pull together without wanting to scream because the effort of writing it is so overwhelming.

Thanks to the Kindness of... Everyone

One of the most amazing things about this experience, so far, has been the true, heartfelt kindness that has been poured onto me. My friends, family, and even mere acquaintances have offered to help me in any way I might need it. Strangers are lighting candles and saying prayers for me. How can I, even for an instant, feel sorry for myself, when I am the recipient of so much love and kindness?

I don't feel sorry for myself. What I feel is love and gratitude. Since I lost my mother 10 years ago, I've spent a lot of time feeling lonely and unhappy. I've felt unloved and alone. But now, I realize that I haven't been alone, and I'm not alone now. I realize that in my grief, I shut myself away from those who would love me, but now I'm opening myself up to all of that love.

I've always believed that love is the opposite of fear, and right now I'm proving it. My heart is so filled with the love that I have for my friends, my family, complete strangers, and myself that I have no room for fear. No matter how scary this thing might seem, I am not afraid of it.

Thank you to my entire support system and to those people who only know of me through their friends and family. Thank you for your prayers. Thank you for your support. Thank you for your love. Thank you for being who you are. Thank you.

Chemotheraphy

I thought I would provide a complete breakdown of my day yesterday, for those of you curious about the procedure.

I showed up at 10:00 AM and had bloodwork done. This is to ascertain my blood levels and make sure they are within acceptable levels for receiving the chemo. Since it was my first time, my counts were perfect. :)

An hour before my chemo appointment, I'm supposed to take my Emend... which meant I was supposed to take it at 10:00, but didn't remember until 10:30. But that was okay, because she had other things she needed to do first, so it still ended up being an hour before I received chemo.

I was in a private room. This is because it was the first time and she had a lot of questions for me. During subsequent visits, I may or may not get a private room, depending on availability. The other option is giant room (they call the "big room") that holds a whole bunch of people.

You can bring food or drinks in with you... which is pretty cool. They also have coffee, tea, soda and water available in a tiny kitchenette. And, sometimes there are snacks available too. I think I might start bringing in snacks too to share with the other patients.

After getting me settled in my room, she put an IV with a saline drip into my arm. The needle was really small and didn't hurt at all. They will be alternating sides of my body that they insert this in each time I go so as to give my veins a little more time to recover each time.

The first thing she did was to run a couple of different types of anti-nausea medicine through the IV. That took about half an hour. Then she started the chemotheraphy.

The first thing she gave me was called Adriamycin. Although this was given through my IV, she manually fed it in, rather than just attaching it to a drip. She would push through a couple of cc's at a time, then pull back and let the saline carry it through. This was followed by Cytoxan, which was attached to the IV as a drip. It combined with the saline to carry it into my system. Whereas it took about 20-30 minutes to feed through the Adriamycin, the Cytoxan took about an hour.

Jeanne (my super awesome nurse) set me up with a regimen for taking my anti-nausea medication for the next few days. After that, it goes onto an "as needed" basis. That starts tomorrow.

Ever since receiving my chemo, I have felt physically fine, but really tired. I feel like I could sleep all the time. I don't know how much to attribute to the chemo treatment itself (red blood cell counts, etc.) and how much to attribute to the anti-nausea medication that makes me drowsy. I guess I'll start finding out tomorrow.

Today, I went back for my Nuelasta shot, which is supposed to raise my white blood cell count, to better fight against infection. So, at least I know that my chance of infectio nis really low. Unfortunately, being this tired, also makes my ability to concentrate really low, so I'm going to go now and I'll catch you up on more details later.

Race for the Cure

Shannon mentioned this in one of the comments, but I thought I would give it its own post.

What is it?
It's 5K Race/Walk and One-mile Walk to benefit breast cancer. It raises money for the Susan G. Komen Cancer Foundation for breast cancer. It is hosted locally by the Barabara Ann Karmanos Cancer Center.

When is it?
Saturday, June 10, 2006, 6:30 - 10:30 AM
Our lovely Athena was already planning to run. When she learned of my cancer, she said, "Now I know specifically who I'm running for." Shannon has indicated that she is planning to join. If I'm not on my Alaska cruise (which still remains to be seen), I will be there too.

Where is it?
Comerica Park. The 5K route is on Woodward from Fisher Freeway to Warren and back. People are welcome to either walk or run this route. The one-mile walk follows the same route, but turns back at the 1/2 mile mark on Woodward.

For more information about:

• Race for the Cure in Detroit: http://www.karmanos.org/detroitraceforthecure/
• Race for the Cure Nationally: http://www.komen.org/
• Barbara Ann Karmanos Cancer Center: http://www.karmanos.org/
• Susan G. Komen Cancer Foundation: http://www.komen.org/
  

Quick Update

This will be a quick update as I am super tired and heading to bed now.

It has been a full day for me on my first day of chemo, but it has also been a good one. The chemo went really well, and I felt as good walking out as I did walking in. Some of that is because it's my first treatment. But, the anti-nausea medicine is a huge tribute to that as well. And, I had my sister and her friend here with me. They both have a lot of really great positive energy, which really helped me through this process.

I have lots of details about the chemo treatment, and what it's like, so I'll share that with you tomorrow. But, now, I'm off to bed.

Upcoming Appointments

This is a list of the upcoming appointments that I know about. Right now, I only have two chemo sessions scheduled. I should know more tomorrow about when the others will be, and how often I'll be following up with my doctor. I'll post more appointments as I get them.

Wednesday, April 5, 10:00 AM - 2:00/3:oo PM

First Chemotherapy Session
Right now, I really don't know what to expect from chemo. I don't know how long it will take, but based on what I've heard from others who have been through it, it will probably take 3-4 hours. I have to be there at 10:00 and they start at 11:00. I expect this is because of the first-time paperwork that I've had to do everywhere else. I don't know if I'll be in a private room, or if I'll be in a big room with a lot of other people who are doing this too. I don't know if I can have multiple people with me or not, so this first time I'm asking people not to stop by the hospital. If you want to call me and see how I'm doing, feel free to do so. If I'm tired and decide to go to bed early, I'll just turn off my phone... so you don't need to worry about disturbing me. :)

My sister is driving from Niles (Michigan) to do this with me, so no need for volunteers.

Updated: Thursday, April 6, after 2:00/3:00 (or anytime Friday, April 7)

After speaking with the staff at the cancer care center yesterday, I learned that it's fine to combine my nuelasta shot with my echocardiogram Friday.

Friday, April 7, 12:45 - 2:00 PM

Echocardiogram
High-dosages of the chemotherapy (over 450) can potentially do heart damage. We won't be exceeding 300 in my sessions, but my doctor plans to monitor my heart anyway. This appointment is to determine my starting place... a control, if you will. I think I can probably have my nuelasta shot while I'm at the hospital for this. I'm guessing on the duration, but I think it probably won't take more than an hour or so, even with the shot.

Nuelasta Shot
Due to the accelerated frequency of chemotherapy sessions, I need this shot to keep my white cell count stable. I have to wait at least 24 hours after the conclusion of my chemotherapy session. Apparently, I can do this anytime of the day; I just need to show up. Most likely, I will combine this with my echocardiogram appointment on Friday.

Update: Katia has volunteered to accompany me on Friday for my echo and shot.

Friday, April 14, 11:00 AM - 2:00 PM

Bone scan & CAT scan
These tests are to determine two things: staging and hereditary factors. This will determine whether the cancer has spread beyond my breast, which will tell them what stage I'm in. They are also testing to determine if I carry one of the hereditary breast cancer genes (BRCA1 or 2). That determine whether I have an increased risk that I might get this in the other breast too. If I do carry it, my doctor strong suggests I have a bilateral masectomy when I go in for surgery... but we already know that I'm probably doing that anyway, regardless of the outcome of the tests.

Update: Mike is coming up to do this with me and to hang out for the weekend (or at least part of it). Yay!!

Thursday, April 20, 9:00 AM - 1:30 PM

Bloodwork & chemotherapy
I start this day by getting bloodwork. This is so they can monitor my chemotherapy levels and make adjustments as they go. So, I do that first, so that they have the results by the time the start the chemo drip.

Update: Becky (Athena) is scheduled to do this day with me.

Friday, April 21, 1:30 PM (or after)

Nuelasta shot
Same deal as before... show up anytime and get the shot, as long as it has been 24 hours or more since the end of my chemo session.

Picking up speed

I had my first appointment with my oncologist today, and I'm feeling really good about everything.

I like my doctor a lot. He's exactly the kind of doctor I need. He has treated ibc before, but it's a rare disease, so he hasn't had a lot of ibc patients. However, he obviously knows his stuff. He definitely hit on all the key things that I was looking for. Plus, he spent a great deal of time with me today, carefully answering my questions and explaining all my options. He was patient and assumed that I am an intelligent person. He didn't speak down to me or gloss over anything. Also, he didn't choose my treatment for me. He laid out all the options, provided the pros and cons of each one, gave me his recommendation, and let me make the decision. Yes, exactly the kind of doctor I need.

Due to the incredible experience I've had with this doctor, I've decided not to pursue a second opinion. Everything he said to me is in complete agreement with all the research I've done on this. He has also indicated that he's going to make sure he has the latest information on any recent studies and that we can adjust my treatment if we learn anything new. So, he's flexible too. I feel that not only is my faith in my own ability to heal an important factor in my recovery, but so is the confidence I feel in the doctor that is treating me. After spending nearly two hours with my oncologist this afternoon, I have the utmost confidence in his capabilities.

So, now that I know what my initial treatment is going to be, let me share it with you.

We will start with chemotherapy. Treatment for ibc always starts with chemotherapy. The reason for this is that the cancer is so aggressive, that the chemotherapy immediately halts any progress of the cancer and, hopefully, shrinks it down.

Due to the aggressiveness of this form of cancer, the treatment is also aggressive. Traditional chemotherapy usually has the patient receiving treatments every 3 weeks. However, they've had a great deal of success with "slamming" the treatments together in shorter periods of time. It does mean I'll have less time between treatments for recovery, but it also tends to kill more cancer cells each time. He gave me another "high-dosage" alternative that would have me still receiving chemo every 3 weeks, but I have opted for the biweekly treatment.

I begin chemotherapy tomorrow. Fortunately, a lot of advancements have been made in anti-nausea medicine, and my doctor has given me not one, but three prescriptions for anti-nausea medication:

• Emend - This is taken in conjunction with the chemotherapy. I take 1 pill an hour before my chemotherapy starts. Then, I take 1 pill each morning for the 2 days following treatment. This is supposed to help tremendously with nausea.
• Compazine - This is to take any time I'm feeling nauseous. This is more for daytime use as it supposedly doesn't make you too drowsy.
• Ativan - This is also to take any time I feel nauseous, but this one is better for night because it does make you drowsy.

Following the chemotherapy, they'll do surgery. It sounds like they will be doing a masectomy. I'm actually considering getting a bilateral masectomy (both breasts) at the same time, even though, currently, only my left breast is affected. The reason for this is that I really don't want to go through all of this only to find out that a year later (or 5 years later or 10 years later), I have to go through it all again with the other breast. And they should be able to do reconstructive surgery for both breasts at the same time.

I've got my schedule of appointments for the next couple of weeks and will post them under a separate message. Please look at the dates and let me know if you can volunteer to go with me. I really don't want to have to do this stuff alone. So far, I've found that having people with me really helps me stay positive.

Thanks everyone!

Wearing it on my sleeve

Okay, you all know that I tend to be really open about whatever is going on in my life... not only wearing my heart on my sleeve, but pretty much everything else too... right down to the spaghetti I had for lunch... if I wear white on the same day I eat spaghetti. But, I digress.

When I saw this pink ribbon watch, I thought it was pretty cool. It's so me to advertise whatever it is that I'm going through at any given moment, and this is just one of those things that hopefully makes people more aware. ("Ask me about my pink ribbon watch.")

The last time I wore a watch, it was my mom's Mickey Mouse watch. The battery died several months ago, and I've been too lazy to go get another battery. It seems like a perfect opportunity to buy a new watch.

What do you think? Think I should spring the $55 for it? It's going to a good cause... a cause that directly impacts me. Or do you think I should save my $$$ for all those potential medical and pharmaceutical bills?

Hmmm. I'm not quite sure yet how much insurance will cover yet... maybe I should hold off on the watch. :(

Suggestions are not only welcome... they are encouraged.

Research Pays

I've been doing a little research on the subject of inflammatory breast cancer (ibc), and I have some concerns about the information that the doctor gave me when he diagnosed me.

He told me that this was confined to my breast and hadn't spread anywhere. How does he know that? I keep reading that it grows in sheets (or nests) and not tumors. And, by definition, it apparently affects the lymph nodes. How can he know it hasn't spread anywhere if it's a disease that automatically affects lymph nodes? Did he biopsy any lymph nodes?

He told me that they would start with radiation and maybe chemotheraphy, but that surgery would be the last thing they do. This makes absolutely no sense. Every single thing I've read on ibc, without exception, has been that this form of cancer is always treated with chemotheraphy first to halt progress of the cancer cells (and to possibly shrink them), followed immediately by a masectomy. That is often followed by more chemo and radiation is last. So why the hell are they telling me that radiation is going to be first?

He didn't say it, but everything he did say led me to conclude that I am likely in Stage 0 or 1 of cancer. Because in those stages, you do start with radiation and you try breast conservation surgery. (He implied that surgery may not be needed by telling me that it would be the last thing they do if they decided it was necessary.) From everything I've read, ibc is automatically placed in Stage IIIb. At that stage, you never start with radiation, and with ibc, you never start with radiation.

I'm hoping that these comments were made by a surgeon that has no experience with ibc, but that my oncologist will have ibc experience. This is a very rare form of breast cancer. Only 1-2% of all breast cancer cases are ibc. It is not unusual for a doctor to have no experience with it. That is one of the many questions I'll be asking my oncologist tomorrow.

I have several things I'll be looking for him to tell me. And if what he's telling me doesn't make sense, I will be seeking out a second opinion from someone who does have experience with ibc.

I'll be honest that all of the research I've done has made me realize that my situation is much more critical than I first realized. When I say more critical, I just mean that delays in action and the wrong actions can have fatal consequences. I'm still confident that I will get through this okay, but I'm not going to blindly follow my doctor down a potentially wrong path. I think that in addition to my sfa (super-fantastic attitude), my decision to be well-informed and to get as much information as possible about this disease, is going to be what gets me through it.

That, and all of the amazing people who are surrounding me, supporting me, and loving me. Thanks. :)

Documentary

I forgot to mention that I'm doing a documentary on this experience. As a filmmaker, I have a unique tool to share my experience with others. I've already learned a great deal in the short time since this has begun. I'm going to use my experience and my passion for filmmaking to share what I learn with others in an effort to raise awareness about breast cancer.

When I recently told a friend about what I'm going through, I shared that I was doing the documentary and this blog. She suggested that a good title for my documentary is the same one I gave to this blog. I loved the suggestion, so I'm going with it. I will be titling my documentary "Taming the Savage Breast," the same as this blog. (Thanks, Amanda!)

Still Standing

Well, I've had a few days to process and absorb my diagnosis, and I'm still doing great. I won't pretend that the whole thing doesn't worry me a bit, but it's definitely not devastating me. It's not stopping me in my tracks. I think had I gotten this diagnosis 6 months ago (or longer), it would have undone me. But, today, it just is something I need to deal with and move on.

Sometimes, I think that it won't really feel real until after I've had my first visit the oncologist and have started treatment. But, then again, every night when I get in bed, I have to deal with the discomfort of having one rather swollen breast. It's not comfortable for me to lay on my left side at all in the way I am accustomed. I've had to make adjustments that are not related to treatment, but still affect me. In those moments, I know that this is real.

I don't ever forget about it. On some level, I am always aware of it. I am aware of my body in ways that I wasn't before. In that way, it's not a terrible thing.

In fact, I've already received some tremendous gifts out of this experience. My friends have rallied and provided me with a ton of love and support. That feels great. Also, I have achieved some success in living for the moment, instead of living in the past or future. I've been trying to figure that out for 40 years. I am not deluding myself into thinking that this is going to be a breeze. I know that it will be a challenging, emotional experience for me. But, I also know that I'm not afraid of it. Whatever it is, I'll deal with it.

And, in some ways, that is the greatest gift I'm receiving from this experience. That is the core of who I am. And, I haven't been that person in a really long time. Or, at least, I haven't been connected with that part of myself for a really long time. The beginning of this year was a turning point for me, in which I decided that I was done carrying around all this baggage of unresolved grief, anger, and doubt. I had already set my feet upon the path to reconnecting with the me that I've known and loved. When I was diagnosed, I came face-to-face with her.

It feels good to be back.