Mouth sores galore

I'm nine days into my first 14-day chemo cycle and still suffering no major debilitating side effects. Yay me! I'm still able to play tennis and do all my regular mom stuff. I don't feel 100 percent, and I'm pretty wiped out at the end of the day, but that I can handle.

The only real problem I'm having at this point is an outbreak of mouth sores -- ouch! It's painful to eat, drink and even -- gasp! -- talk. But I got myself some "magic mouthwash" from the pharmacy and it's helping a little bit. And I'll take mouth sores (we're talking a dozen or more) over most of the other side effects any day.

Keep those prayers coming. They are working. Love to all.

More answered prayers

I've asked everyone I know to pray for minor side effects and it is working! Keep up the good work.

Today I have felt fatigued (I even took a nap!), but nothing unbearable. Lucky, lucky, lucky me!

Speaking of luck, I found a four-leaf clover while out walking with the boys on Tuesday. It just jumped out at me right away. Gotta love it!

Poppin' pills

So far, so ... not terrible.

Took my first dose of Xeloda yesterday with breakfast and the second dose yesterday at dinner. No major problems during the day, just a little fatigue. Took my first dose of Tykerb last night at bedtime. Woke up this morning with mild digestive symptoms and popped an Immodium. I think I'll take the doc's advice and take one every two hours today.

Hoping to play some tennis today! Stay tuned ...

Baby steps

Well, I saw my oncologist today and things are moving a little more slowly than I had anticipated. The two drugs I will be taking (only one of which is actually a chemo; I have mistakenly been calling them both that) have to come from a specialty pharmacy. The one our insurance uses is mail order, so it will be a few days before I get the meds.

The chemo pills are taken in three-week cycles. You take them twice a day for two weeks and then take a week off. The other drug, which is a targeted therapy, is once a day every day. After my first chemo cycle, I'll see the doctor to make sure I'm tolerating it well and start another cycle. After the second cycle, we'll do a scan to see how much (not if!) the cancer has diminished.

The good news is that I can plan my first chemo cycle so that my week off is the week of spring break. So that means I probably won't start until the week of March 22.

The bad news here is that it sounds as if the side effects can be really horrific. They've told me I'll need to take Immodium every two hours; you figure out the rest! I'm also told to be on the lookout for hand and foot disease.

Because the pills come in small amounts, I think I'll be taking something like 20 pills a day! Well, add the Immodium and I guess it's closer to 30! Yikes.

Thanks again for all the love, support and prayers. I feel very blessed.

Forgot to tell you ...

The next step is an appointment next Tuesday (March 9) with my Emory oncologist. I suspect there will be some bloodwork to complete before I can start treatment, but hopefully that won't hold us up too long.

Please pray for minimal side effects from the treatment. I'm happiest when I can stay busy!

Thanks to all for the amazing outpouring of support. I am truly blessed.

The beast is back

I recently found out my breast cancer has returned. Right now it is showing up in two small lymph nodes in the same general area where the original cancer was found on my right side. The pathology is similar to my original cancer -- estrogen receptor positive, progesterone receptor negative (different from last time) and Her2neu positive.

My docs at Emory recommended radiation immediately followed by Herceptin, an infusion drug I took following chemo last time. They did not recommend surgery. Something just didn't feel right.

So my mom and I went to MD Anderson in Houston for a second opinion (Todd stayed home to take care of the kids). The doctors there are recommending a much more aggressive approach, and discussed it with my Emory doctor while I was sitting right there in the room. So I will get the MD Anderson treatment right here at Emory and I couldn't be happier! Especially since the MD Anderson doc used the word "curable," something I had not heard even an inkling of from anyone else with this latest diagnosis.

While I was in Houston, I bought myself some "cancer-butt-kicking" cowboy boots. It's going to be a long, hard road but worth it in the end. The plan:

-- Six weeks of chemo (Tykerb and Xeloda). Bad news: side effects include nausea, vomiting, etc. Good news: No hair loss. Best news: Can be taken in pill form; no more endless needle sticks and trips to the infusion room.

-- PET scan to see how cancer is responding to new chemo.

-- Six more weeks of same chemo.

-- PET scan to see how cancer is responding to new chemo.

-- Surgery to remove anything that is left. Will have to remove implant. Unclear if/when it can be replaced.

-- Radiation (frequency and duration TBA)

-- Continue chemo (Tykerb only) for one year.

Please keep us in your prayers as we start a new battle.

Keeping you abreast, Vol. 9

Summer 2006

Hello everyone! I bet you thought you wouldn't be hearing from me anymore, huh? Well, I'm baaaack!

Sorry it has been so long in between updates. Here's the latest (abridged version):

Treatment
-- Currently taking Tamoxifen, a daily pill to block estrogen receptors on any remaining cancer cells, experiencing minimal side effects. Supposed to take this for five years.
-- Had to stop taking Herceptin, an infusion of a very effective drug I was supposed to take for a year. I was one of the unlucky few who experienced "cardiac toxicity" from this drug. In other words, it was attacking my heart as well as the cancer cells, so had to stop that one.


Hair
-- I have short, brown very curly hair. It finally looks like I just have a short haircut on purpose, getting past that awkward growing-out look. Not the style I would have chosen, but it beats the heck out of being bald!

Reconstruction
-- Had my tissue expanders (inflate-a-boobs) taken out in beginning of March and saline implants put in. Plastic surgeon had to do some extra work on my "pockets," so he was not able to get them as big as we had planned. Will see him next week to discuss possibly having more surgery.

Genetics
-- Tested negative for the BRCA genetic mutations (aka "the breast cancer gene"). This was great news. Now my mom and sister don't have to get genetic testing and possibly make tough decisions (though they're still being monitored closely) and I don't have that added high risk of ovarian cancer.

Life in general
-- Looking up. I am back in shape (actually had to DIET! in addition to hitting the gym) and enjoying the summer with my family. Cooper and Wesley have enjoyed going to the pool, vacation Bible school and tennis camp, and Cooper also went to soccer camp. We've been to Destin twice and still have trips planned to New Orleans and Disney World. Crazy busy -- just the way I like it!

Hope all is well you all of you.

Love,
Michelle

Keeping you abreast, Vol. 8

Winter 2005

Yes, yes, I know. It's been a while since you've gotten an update from me. Twelve weeks of weekly chemo, plus getting ready for the holidays and keeping up with the kids has kept me busy. But now I am doing the happy-happy-joy-joy dance because ...

I AM FINISHED WITH CHEMO!

Merry Christmas to me. And to all those who have had to put up with me and have helped me get through this the last six months.

The side effects from this latest round weren't as severe as the first round (in fact, I had the opposite problem of gaining weight this time from all the steroids, ugh!), but the weekly thing takes its toll pretty quickly. And the side effects got worse as I went along.

You may remember I have said before that I was open to answering any and all questions about this experience. But it seems many of you are still afraid to ask, other than "How are you doing?" Well, that one is harder to answer than some other things I know you are dying to know about. So here's a Q&A, things I bet you wanted to ask but were afraid, embarrassed, whatever.

Q: So what's up with your chest? I thought you had a double mastectomy but you sure don't look flat-chested anymore.

A: Well, I never planned on staying boobless forever, so I have been paying a few visits lately to my friendly plastic surgeon. You may recall that when I had my mastectomies performed back in April, the plastic surgeon at that time put in tissue expanders to help stretch things out and make pockets for me to get some implants down the road. Well, I'm nearing the end of that road! Every few weeks, I go to the plastic surgeon and they inject my expanders (inflate-a-boobs I call them) with saline, and like magic, my chest grows! I am just about where I need to be to get my permanent implants put in (another surgery, unfortunately) in the next couple of months.


Q: Do the inflate-a-boobs hurt when you get them filled up?

A: Yes, for a couple of days. Most of the time they are just uncomfortable, very hard, like having two rocks attached to your chest. Can't wait to get rid of them. The saline implants will be much softer.


Q: What's up with your hair? Can you go without a hat yet?

A: I guess I could, because I do have some hair, but it's still that obvious "something's not right there" look. I have enough hair to feel comfortable wearing a baseball cap without a bandana underneath, but I'm not brave enough to go without a hat yet. Hopefully in the next month or so. My hair does seem to be growing in pretty quickly. I'm told it's dark blonde, but it sure looks like brown to me. And so far it's not curly, but laying flat on my head.


Q: Did your eyelashes and eyebrows fall out?

A: Not completely. They both thinned out quite a bit, but enough of them hung in there for me to avoid that "wow, she looks really sick look." At least that's what I'm telling myself. Others may disagree.


Q: So you're done with chemo, that means you're done and you're cured, right?

A: Ha -- I wish! I'm happy to be done with chemo because the side effects are so draining -- chemo attacks many different kinds of healthy cells as well as cancer cells. Now I get a whole week off (woohoo) before starting my next treatment regimen. I will go every three weeks for the next nine months to get a drug called Herceptin. I still have to get it intravenously, but Herceptin is a targeted therapy drug, meaning it attacks only a specific type of cancer cells. The side effects are minimal for most people, and I can drive myself to and from the treatments. It's also a much shorter infusion, which will mean spending about 2 hours at Emory instead of 4 or 5.
   Also, in about a month, I will begin taking a daily pill called Tamoxifen. This is an estrogen blocker, also targeted to keep any cancer cells left over from being able to grow because my cancer is the type that feeds on estrogen. This has been shown to be a very effective type of therapy, but there will be some downsides for me -- like menopause at the age of 35! I will take Tamoxifen for five years. That's right, five years!


Q: So after all that, you're cured right?

A: Well, the docs will never promise you that. The statistics are certainly in my favor since I have been so aggressive, but you never really know. I did have a particularly aggressive form of cancer  -- it managed to reach two lymph nodes even though I didn't have a single tumor bigger than 1 cm. (For some reason breast cancer tends to be more aggressive in younger women). And that means it could be anywhere. And if  just one little cancer cell manages to escape all the stuff we're throwing at it, it could mean trouble for me down the road. I'm afraid that I will always worry about it coming back. And now lots of new studies are showing that once you have breast cancer, you are much more likely to get lots of other types of cancers down the road (as high as 20 percent more likely in some cases). I am seeing an oncology-gynecologist next month to discuss some preventative actions in that area -- I may end up having a complete hysterectomy down the road to prevent ovarian and/or uterine cancer. Heck, I'm done with those organs anyway!


Q: What's your mental state? Are you really as upbeat as many of your e-mails sound?

A: Of course not! At least not all the time. I have been up and down and all over the place emotionally. Sometimes depressed, sometimes anxious, sometimes downright grumpy. But being done with chemo has lightened my mood considerably. And other survivors tell me that someday, things will seem almost normal to me. A new normal, I guess.


Q: Do you ever get mad at God for giving you cancer?

A: God did not give me cancer. I got cancer and He is helping me through it.


Q: Why do you write such long e-mails?

A: Good question. Time to stop.


Got a question you would like to see answered? E-mail mwilson@ajc.com.


I hope everyone has a blessed holiday season.

Love,
Michelle

Keeping you abreast, Vol. 7

Fall 2005

Greetings. Hope everyone is doing well. Life is good here. The Falcons and Bulldogs are looking good (well, the Falcons anyway, not so sure about the Dawgs!), the weather's still warm (perfect tennis weather -- yes I'm still playing, bald head and all!) and I'm still way ahead in my game against cancer.

I had my first Taxol/Herceptin treatment yesterday and it was a piece of cake. It was a long day, and I went to bed early last night, but today all is well -- almost as if it never happened. What a change from the icky chemo! The nurses tell me that I may begin to feel a cumulative effect after a few weeks, but for now I'm just grateful that I'm on the road to putting this behind me. Eleven more weeks and I'm done with chemo!

Lots of folks who read these updates have suggested to me that I write a book. I'm not so sure about a cancer book, but how about a weight-loss book? Three plans that have worked for me:

1 -- The Double Mastectomy Weight Loss Plan: Who knew that being flat-chested made you look skinnier? It's not like I was all that well-endowed before, but people repeatedly told me after the surgery that I looked thin. And I know for a fact at that point that I hadn't lost any weight anywhere other than the chest area!

2 -- The Icky Chemo Weight Loss Plan: The secret to this plan is doing the Adria/Cytoxin chemo cocktail without enough nausea drugs. Guaranteed to make you not eat for at least four days!

3 -- The Intestinal Parasite Weight Loss Plan: A couple of weeks ago, I thought I just had the stomach flu. But when my fever got a little high, my doctor made me come in. My white blood counts were really low, so I had to spend the night in the hospital. Tests there revealed a parasite that most people fight off easily, some never even knowing it's there. But not me! It has taken me two weeks to get back to normal. I'll spare you the details.

So what do you think? A best-seller? People will do anything to lose weight, it seems.

As always, thanks to everyone for all the support. I plan on paying it forward whenever possible.

Love,
Michelle

Keeping you abreast, Vol. 6

Fall 2005

I apologize in advance for this e-mail to recipients on the list who aren't football fans. But it's September and it's Monday and ... I'm ready for some football!

Scoring update: Michelle 15, Cancer 9

Scoring summary
Cancer scores touchdown with surprise attack (missed extra point due to early detection)
Cancer 6, Michelle 0

Michelle scores touchdown with mastectomy (double mastectomy means two-point conversion)
Michelle 8, Cancer 6

Cancer kicks field goal by appearing unexpectedly in lymph nodes
Cancer 9, Michelle 8

Michelle scores touchdown for completing first phase of chemo (love and support of family and friends provide two-point conversion)
Michelle 16, Cancer 9

Hooray! The icky, dreaded A/C chemo that I've been whining about is over and I survived it! And I've got to keep thinking that if it could be so hard on me, I'm sure it showed no mercy on any lingering cancer cells.

Next up is 12 weekly infusions of another chemo drug, Taxol. I start Oct. 4 and finish up just before Christmas. What a great present that will be! After that I'll go every three weeks for a quick infusion of the promising, relatively new drug Herceptin. That will last another nine months. And after that is a possible five years of some sort of hormone therapy (likely a daily pill). So there's a long road ahead of me, but I really feel like the worst is behind me.

As always, thanks to everyone for all the love, support and prayers. It really means a lot. Please pray for all those who suffered such devastating losses in Hurrican Katrina. Any time I feel like having a little pity party for myself, all I have to do is think about those poor souls to realize how lucky I am.

Love to all,
Michelle

Keeping you abreast, Vol. 5

Summer 2005

Do you know who invented chemo? I think it was Satan. I mean, seriously, who came up with the idea of torturing someone to make them better? We don't use leeches anymore, so can't someone come up with a better idea than this?

Okay, despite how it may seem based on the previous paragraph, I am doing well. Had the surgery to insert my port a couple of weeks ago and all is well with that. Of course, being me, I had to throw in some complications. My surgeon said something about how he wasn't able to get it in as far as he would have liked due to my heart skipping beats or something minor like that. So what should have been a 45-minute surgery was more like two hours.

But I was able to use the port just a week later to receive my third chemo treatment last week. The icky A/C devil drugs! I felt pretty bad for the first few days but am starting to feel more like myself today and expect to be fully recovered just in time to do it again on Sept. 6. But that will be my last of four A/C treatments, so after that things should get easier.

The novelty of being bald has worn off. It is so hot wearing the wigs that half the time I just put on a hat and forget the wig. The kids don't even notice anymore; in fact, I think they will be surprised to see me with hair again one day! I'm still a little uncomfortable with people looking at me when I'm in public, a little uneasy about "looking sick." I used to worry about making other people uncomfortable. Well, I am over that. If my having cancer is an inconvenience to them, too bad!

Wow, I don't know what has gotten into me today. I promise I'm really not feeling as negative as this update sounds. As always, thanks to everyone for all the prayers, calls, cards, food, etc. I am really lucky to have all of you in my life.

Michelle

Keeping you abreast, Vol. 4

Summer 2005

HOORAY FOR DRUGS!

As many of you already know, I had my second "icky" A/C chemo treatment last Tuesday. And thanks to an added nausea drug, it was much, much easier this time. I really only had about a day-and-a-half where I felt really bad and needed someone here to help with the kids. By Friday, I was ready to be back on my own again. Quite a change from last time! It makes it easier to face the next two A/C treatments.

I have decided to go with a surgically implanted catheter port since I still have a lot of infusions ahead of me (a year's worth, in total). I will have this done by my cancer surgeon at Emory next week (a simple outpatient procedure) and then have my next chemo treatment on Aug. 17.

Out of the mouths of babes: My friend Julie was visiting with her precious kids and little Hannah, just turned 3 years old, looked at my bald head under a baseball cap and said, so sweetly and matter-of-factly, "You don't have your hair yet." No judgement, no fear, just matter-of-fact. Too bad us adults can't see the world like they do.

Thanks to everyone for all the support. We couldn't do this without you!

Love to all,
Michelle

"We can't control the wave, but we can learn to surf."

Keeping you abreast, Vol. 3

Summer 2005

   Well, right now I'm supposed to be sitting in an infusion chair at the Emory Cancer Center, watching them drip chemo drugs into my arm. But instead I'm at home typing up an update. Turns out my white blood cell count was too low for me to tolerate chemo today. I was really suprised because I have felt great for the past two weeks. I would never even have guessed that this would happen. It was also annoying that they had to stick me three times to find a good vein and then we didn't even get to use it for chemo. Oh well, we'll try again next week. And from now on, I'll have to get a shot after chemo to help prevent my white blood cell count from dropping too low. I'm also calling my surgeon to get a permanent port put in to help keep from getting stuck all the time.

   Hair news -- I know this is the question everyone wants to ask but they don't want to seem rude. Here are the ground rules for asking me questions -- ask me whatever the heck you want! I don't care. All modesty is totally gone at this point. Being bald and flatchested does that to you, I guess!

   Yes, I am bald, sort of. My hair started coming out last Thursday and with a vengeance on Friday when Todd and I took the kids to Chattanooga. I had brought some scissors with me, and I cut it back a short as I could and wore a bucket cap with a hairpiece attached inside for the rest of the trip. It's a cute look, and pretty comfortable, but I'm sure some people around here are going to wonder why in the world I wear this hat all the time. When we got home from Chattanooga, I shaved my head but I still have a good bit of stubble. And it is very dark! Guess my roots were even darker than I realized. One day when Wesley saw me without a hat, he pointed at my head and said "No Mommy wear that hair. That's Daddy's hair!"

   All of the hairpieces and wigs have names, given to them by the wig company. The hairpiece I have for hats is named Amber. Amber is my favorite wig because she is easy, just hangs straight down from under a hat. Lola is my main wig (ie most expensive) to wear for something like church, weddings, parties, etc. She is nice, but her bangs are much thicker than I have ever worn mine, so that will take some getting used to. Electra is a crazy girl. Light blonde hair that's just very "flippy" for lack of a better word. Not sure if I'll ever have the guts to wear her or not. If you're wondering why I got so many wigs, it's because my insurance paid up to $500 for a "cranial prosthesis," which is what was called on the prescription my oncologist gave me.

Top 10 things about being bald
10. Can rub my own head for luck.
9. Will save a ton of money on shampoo, conditioner, highlights and haircuts.
8. I don't have to worry about getting my hair wet at the pool.
7. Hats actually fit me. I have such a big head, that with hair, I often can't find hats that fit.
6. I can get a suntan on my scalp.
5. I never have a bad hair day.
4. Kids think it's funny.
3. It takes me almost no time to get ready in the morning.
2. I don't look half-bad.
1. It means the cancer drugs are working!

   Thanks to everyone for all the cards, notes, calls, etc. And most especially the prayers. Our freezer is full for now thanks to Marguerite, Marifae and Tina.


Love to all,
Michelle

Keeping you abreast, Vol. 2

Summer 2005

Thanks to everyone for all the calls, cards, thoughts and prayers as I started my chemo last week. For those of you who called and did not get a call back, I apologize. I am just today feeling like I can fully function.

Good cancer news:
-- My full-body scan to check for breast cancer tumors elsewhere in my body was clear!
-- I'm done with the first round of "icky" chemo, A/C.
-- I still have hair.
-- I lost six pounds.

Bad cancer news:
-- The chemo hit me much harder than I had (naively, I suppose) expected. I had the infusions on Thursday, and was pretty much useless from Thursday night to Monday afternoon.
-- Three more rounds of A/C to go. And now that I know how bad it is, I'm dreading it even more.

More good cancer news:
-- Feeling so bad must be good because it means the chemo drugs are working. (Twisted, huh?)
-- They have lots of lovely drugs I can try next time to help me deal with above-mentioned anxiety, which would otherwise most likely make my symptoms worse.
-- Todd is a superhero.

As you can see, more good news than bad news to report. I plan on going wig shopping this week. Next chemo is Wednesday, July 20.

Love to all,
Michelle

Keeping you abreast, Vol. 1

My original e-mail from May, 2005:

Keeping you abreast

Pardon the pun, but I just felt like starting this off lightheartedly!

I'm sending this e-mail to give everyone an update on my recent medical saga. If I haven't talked to you in a while and you are just finding out via this e-mail that I have breast cancer, I am really sorry to do it this way. But it's just not something you want to call someone up and say, "Hey, guess what ... "

So here are the details: Found a lump in my right breast at beginning of March. Mammogram showed suspicious lesions in large area in the same breast. (The lump itself, however, turned out to be benign, a little gift from God to spur me to get a mammogram and find this nasty stuff before it got really bad). Biopsy the next week showed large area of DCIS (ductal carcinoma in situ), which is basically what they call Stage 0 cancer. No chance it has spread beyond the ducts. If you have to have breast cancer, this is the one to have. Am told that minimal size of breast (stop laughing!) and large amount of cancer call for mastectomy. Opt to have bilateral mastectomy (two for the price of one!) on April 25. Recover well, thinking this is basically over except for reconstruction, and play tennis four weeks later.

Surprise! Pathology report from mastectomy shows several small spots of invasive cancer (infiltrating ductal carcinoma), which is Stage II, much more likely to have spread. (What a smart cancer I have; it skipped a whole stage!) So go back for more surgery on June 6 to have lymph nodes removed and tested for possible spread of cancer. Still recovering from that one. Two of 16 lymph nodes test positive for cancer cells. This is not good news but it could be much worse.

Went to oncologist today to map out treatment plan. Done so much research on the Internet that I know pretty much what to expect. Will have full-body scan next week and start first round of chemo (Adriamycin/Cytoxan) on June 30. I will have four infusions of this, each one three weeks apart. Second round is a chemo drug called Taxol, once a week for 12  weeks. Along with this I will be receiving a drug (Herceptin) that has had very good results with the particular type of cancer I have (her-2/neu positive). When the 12 weeks is up, I will stay on Herceptin for another nine months. Then after that, five years of hormone therapy. I really think that once I get past the first round of chemo, it will be smooth sailing. And even for that first round, I have high hopes that it won't be that bad.

The oncologist seemed extremely optimistic that I would respond well to this and almost certain that with just two positive lymph nodes, there was no real need to worry about the cancer having formed something harmful somewhere else in my body. The chemo and all the drug therapy is just to do everything possible to seek out and either kill (chemo) or disable (Herceptin and hormone therapy) any microscopic cancer cells that might be hiding out somewhere. So I am feeling pretty good about being able to eventually put this all behind me and not think about it anymore.

Thanks to you -- my wonderful family and friends -- for all the love, support and prayers. One of the blessings of cancer for me has been being reminded of just how many generous, caring people I am lucky enough to have in my life. I know if I needed anything, there are dozens of people who would drop anything to help me out. How lucky am I?

Pray for us and for all families going through something like this. Pray that they can all put their trust in God and let Him bear the burden. He's doing it for me.

Love,
Michelle