Who is your cancer survivor role model?

When I was first diagnosed with breast cancer, I scoured the Internet to find examples of people who had what I had. I wanted to know the extent of their breast cancer, what they did for treatment and most importantly, how they were doing today. I guess I just needed some reassurance.

The first person who came to mind was Christina Applegate. Here is a young woman who made the very dramatic decision to undergo a bilateral mastectomy even though she only had early stage breast cancer and no lymph node involvement. Her initial protocol was a lumpectomy and radiation. She also tested positive for the BRCA gene and watched her mother fight breast cancer twice.

Christina decided she didn't want to deal with breast cancer her entire life like her mother had done. She also didn't want to expose her body to chemo or radiation. And she wanted to start a family. Now that I know more about breast cancer, I can understand why someone like Christina would want to avoid removal of her ovaries and hormonal therapy.

Christina's situation was a little different from mine so I started looking for women who had undergone a lumpectomy and radiation only. I found Jaclyn Smith and Sheryl Crow.

Both of these beautiful women had similar diagnoses as me. I thought: "If they can do it, I can do it,too!"

Sheryl Crow went on to adopt her two sons after cancer. Both women are stellar examples of the importance of early detection and how you can move on after a lumpectomy and radiation.

Keeping these women in mind, I went ahead with my lumpectomy feeling confident I would have the same outcome. But after my surgery, my doctor found a tumor in my sentinel lymph node and I learned I would need chemo along with radiation. I need a new role model.

That is when I read about the actress Maura Tierney. Maura is just a few months younger than me and had a similar diagnosis. She underwent a single mastectomy, chemo and radiation. During her treatments, she put her career on hold and gave up her role in the NBC series "Parenthood."

Now almost two years later, Maura has finished her treatments and has returned to acting. She appeared on the TV series "Rescue Me" playing Denis Leary's girlfriend. The show's writers added breast cancer into the her character's storyline and Maura played the part with her own bald head exposed.

Maura's hair has started to grow back beautifully. I hope that I will be as brave as Maura and hope my hair comes back just as gorgeous!

Decision time... participate in a clinical trial or not?

When I met with my oncologist on August 2, she told me I would be a good candidate for a clinical trial which is studying the effects of Herceptin on women with early stage breast cancer who are HER2-negative. Herceptin is normally given to women who are HER2-positive which means their breast cancer is more aggressive and has a higher chance of recurrence. The particular clinical trial I was asked to participate in is trying to evaluate if Herceptin can help reduce a woman's risk of recurrence if she is HER2-negative (like me).

For a good explanation on HER2, take a look at this article on Dr. Susan Love's breast cancer website.

So I have been very conflicted about this clinical trial because Herceptin is not without its side effects. The riskiest side effect is possible damage to the heart and lungs. If I participate in the trial, I would be closely monitored for side effects and the drug will be stopped if the doctor feels my health is being compromised.

********STOP THE PRESSES!************

As I was looking for a link on Dr. Susan Love's website to help explain HER2, I found this GEM!

I have early stage breast cancer. Can I use Herceptin?

Dr. Love explains that Herceptin has been approved for adjuvant therapy in treatment of women with early stage breast cancer since 2006. And she goes on to say this:

In April 2005 the three trials were stopped about two years early when researchers found that women who were given trastuzumab along with chemotherapy were 50 percent less likely to have their cancer recur.

Wow. That is an amazing stat. 50% is HUGE.

The information on the clinical study that I am considering says that the research is being done to learn more about using Herceptin to treat HER2-negative breast cancer, specifically in premenopausal women.

I think I may have resolved my own dilemma. If Herceptin has been approved for use in women with my type of cancer since 2006 and it is reducing recurrence rates by 50% -- then I say: SIGN ME UP!

More to come.

I could not have said it any better

While I try very hard to remain positive and optimistic about my future, I would be lying if I said my mind never wanders to dark and scary places every now and then. When I was initially diagnosed with breast cancer, it took a day or so for the reality to hit me. And when it hit me, it kicked my ass! I had a complete and utter meltdown.

I looked at my husband and just kept saying: "This can't be happening! We're supposed to grow old together!" I thought about my best girlfriends and all the jokes we make about getting a condo together in our old age and living like "The Golden Girls" when our husbands kick before us. I thought about a recent conversation with our financial planner about how to best structure our savings so that we would have money to live on should we need assisted living.

Suddenly, all my visions of getting old went right out the window and that scares the hell out of me. No one WANTS to get old but I can assure you -- it beats the alternative!

Yesterday I was looking at some of the conversations on a message board at My Crazy Sexy Life (a wellness community started by cancer survivor Kris Carr). One comment jumped right off the screen and basically put into words everything that I have been thinking these past two months.

Today I was thinking... before having breast cancer I was so spoiled. I never truly wanted for anything, everything I desired came easily for me, a healthy body, a great husband, house, cars, trips round the world. But then, WTF?!! cancer struck and now every moment I am struck by how beautiful life is. A tickle fight with a friends five year old (will I ever have a five year old?), a road trip with my husband (how many miles left?), sitting in my fancy house (will these curtains outlast me?), every small minutiae seems infinitely precious. Do I appreciate cancer? HELL NO! but it has made me aware of how amazing this life is.

-- Written by Carissa, a 29 year old with breast cancer who just underwent a mastectomy, chemo and radiation

**Note: For those of you who think breast cancer does not strike younger women, think again. It does and it is getting more prevalent.

I find myself thinking very similar thoughts as Carissa, particularly the ones about "will these curtains outlast me?" I wonder if my 8 year old dog (with diabetes, Cushing's disease and cataracts) will outlast me. Strange, I know. But this is what happens to my mind at any given moment. It takes a very sharp detour down a dark and scary path.

I know that I need to do everything in my power to stop these thoughts from overpowering me. But at the same time, I have to believe these thoughts are a natural part of the process. I just need to make sure they don't take over my fighting spirit and the belief that I will become healthy again.

Chemo - Bring it on!

My decision to take chemo was made pretty easy for me today.

I had an appointment this morning to have my surgeon look at my breast to verify whether or not it is infected. While I was there, I confirmed the information about my lymph nodes.

It turns out my surgeon was mistaken about what was found in my lymph node. Evidently, he read one of the other measurements regarding margins and thought it was the finding in my lymph node. Or I heard him incorrectly (NOT).

Bottom line: there was indeed a metastatic tumor that measured 9 mm. which is not huge but definitely not "micro-metastatic." Everyone agreed that my oncologist's recommendation to do chemo is absolutely correct. There was no more doubt in my mind or concern about getting a second opinion.

I cannot start chemo until we are sure there is no infection in my breast. The surgeon's PA drained some fluid to have it checked. She also did an ultrasound but did not see anything out of the ordinary. The redness of my skin could simply be bruising from the pressure of the fluid build up in the lumpectomy site. I will know for sure on Monday when my results come back and I go in for a follow up appointment.

In the mean time, I am taking some kick ass antibiotics which make me a little nauseous and very drowsy. I am going to need to take this med at night after dinner so I can lay down and sleep it off.

All for now...

Oncology Update

My update is a little conflicting and I have more investigating to do but here is what I know right now.

Barry and I met with my oncologist, Dr. H at VCU's Massey Cancer Center. According to Dr. H the cancer that was found in my sentinel lymph node following surgery was not "micro-metastatic." She says is was an actual tumor which measured 7 mm. in size which she said is very small but not microscopic as Barry and I remember the surgeon telling us. The good news is that the tumor was self-contained. It had not spread outside the walls of the lymph node structure. I need to ask some more questions of my surgeon to understand why he says it was "micro-metastatic cancer" and my oncologist is saying "tumor." My surgeon was pretty adamant that I would not need chemo but then again - he is a surgeon, not an oncologist. Someone's wires are crossed somewhere and that makes a big difference in the decision to do chemo.

Because of the lymph node involvement, Dr. H recommended I take some chemo - she called it "chemo light" - which would be six rounds of two drugs: taxotere and cytoxan. I would take these drugs every three weeks through an IV. There is a third drug that is often given to breast cancer patients (I can't remember the name - sorry!). This third drug is the one that causes most of the nausea, vomiting and carries a risk of weakening the heart. She said I would not have this third drug. I believe the normal chemo regimen is 8 rounds of all three drugs.

Yes, I will lose my hair on this regimen. Besides the hair loss, my side effects would be mostly tiredness, muscle aches and chemo brain (foggy thinking - worse than what I already have!). There is an increased risk of infection, possible nausea/vomiting and a rare risk of leukemia. Dr. H then recommends radiation following chemo, eventually a complete hysterectomy and then hormonal therapy (either tamoxifen or an aromatase inhibitor) to suppress any estrogen in my body.

I had the oncotype DX test which is a genomic test of my tumor. This test really didn't seem to help much only because my score came out in a "gray" area. The test recommends no chemo for someone with a score of 18 or less. My score was 17 which would indicate no chemo. But it does not take into account the fact that I am pre-menopausal or the fact that I have lymph node involvement. And Dr. H feels that since I was on the high side of "no chemo" and have the lymph node involvement, she believes chemo is necessary. She also said the oncotype DX test people are strongly considering moving that low range from 18 down to 16. If my score was really low - like a 5 - and I had no lymph node involvement, then that would make a decision to not do chemo relatively easy.

In other news... I have developed an infection in my breast in the lumpectomy site, so I have to go on antibiotics over the next 7-10 days before I can start chemo anyway. This gives me some time to sort this out and seek a second opinion. I am strongly inclined to do chemo. I want to make sure I hit this cancer with everything possible.

Even though I have been through surgery, this experience doesn't seem real to me. I am sure it is going to get a whole lot more "real" in the coming weeks.

On a positive note - just think of all the money I will save on haircuts and color this year!

Great news!

I recovered pretty quickly from my surgery. I had very little pain and only took two pain pills when I returned home on July 14. I slept well and could move my right arm without much limitation.

My husband and I stuck close to home simply because I really couldn't shower due to the drain and bandages. But I felt fine so we drove down to Williamsburg to walk around, shop and have lunch on Saturday afternoon. If it weren't for the damn drain, I'd have been taking a shower and gone back to work. We were both pretty amazed at how very little pain I had following surgery - basically no pain.

At 9 AM on Monday morning, the phone rang and it was the surgeon's office with very good news. Dr. K was able to get clear margins on all sides of my tumor and the additional nodes showed no signs of cancer. Woohoo! Talk about doing a happy dance! We were THRILLED!

I went back in for a post op visit and the physician's assistant removed my drain. MY GOD that was painful. Luckily, it only stung for about 15 seconds and then it was over. What a relief!

Over the next couple of days I was able to take a shower and remove the steri-strips from my breast and armpit area. My breast looks amazingly good. It's a little flat on the side where he performed the lumpectomy but if you didn't know any better, you might not notice it at all. The incision is about two inches long but extremely thin. He did not use any stitches on the outside on either my breast or my armpit. The incisions look great and will definitely fade away to nothing.

I have an appointment with the oncologist on August 2. That is when we'll talk about her recommendations for treatment. I know I will have radiation. I am not sure about chemo. Dr. K ordered the new oncotype DX test which will help determine if my cancer requires chemo and if so, what kind.

I will do whatever it takes to rid my body of cancer. Right now, I am relieved and extremely grateful.

Post surgical update

My lumpectomy is one for the history books. Thank God it's over.

I went in on July 13 at 11 AM where I was taken to nuclear medicine for my radioactive dye injection. The realty of my situation really hit me when I was laying on the table and the doctor injected me with the dye - which was pretty painful by the way.

I laid there and I just thought about all this radioactive crap entering my body and how much those injections hurt. And then I thought about my mother who had battled metastatic lung cancer for over two years and I remembered how much pain she had been in and how many uncomfortable procedures she had to endure. I felt her presence as I laid on the table and suddenly my fear mostly evaporated. I had an overwhelming sense of peace. I felt like I could get through this and everything was going to be fine.

I also felt like I could almost hear all the prayers, good thoughts and positive vibes coming from all my friends and family. During the time leading up to my surgery, a lot of people sent me encouraging cards and emails. I knew they were all pulling for me and I truly felt their collective positive energy when I was waiting for that dye to spread through my body.

After the injection, they wheeled me into the O.R. staging area where nurses prepped me for surgery. By the time Dr. K showed up at about 1:15 PM, I was totally relaxed and reading the latest issue of "Traditional Home" magazine. His first comment was, "You are so laid back and relaxed!" I told him, "I might as well be relaxed. It beats the alternative." He agreed.

The next thing I knew, I was waking up from surgery at about 4 PM. I was extremely groggy and didn't see the doctor. The nurses prepped me and moved me to a room for an overnight stay. As soon as I got situated in my room, my husband showed up and gave me some not-so-good news.

The lab found microscopic cancer cells in my sentinel node. He said everyone was extremely surprised at that finding and Dr. K had to remove several more lymph nodes for more testing.

Although my husband did a wonderful job of explaining everything to me, I was devastated. I knew that cancer in the lymph nodes moved me from Stage 1 to Stage 2. And once a cancer cell finds its way into your lymphatic system, it enters a super highway to all points in your body.

I felt this was very bad news and my cheerful optimism prior to surgery was replaced by a dark cloud of depression. All I could do was wait for the results and hope the surgeon was able to get clear margins around my tumor and that there would be no more cancer in my lymph nodes. Results would not come in for another 4 to 5 days.

That night in the hospital was a L-O-N-G one. I was lucky that I had my own room and was actually able to sleep and get some rest. But I felt like the wind had been taken out of my sails. I had the whole night to just lay there in the dark and think.

Dr. K showed up early the next morning and briefed me on the surgery. He really didn't tell me anything new. My husband did a great job of filling me in. But Dr. K was not his usual optimistic self. He said he "hoped" he got enough tissue around my tumor to get clear margins. He said he had to take more skin than he had originally thought he would need to take. And he said the skin had puckered up so then he had to release some skin to help smooth down the incision.

What happened to barely being able to tell I had anything done? Where was that confident surgeon I had met with on June 20?

I asked him how many nodes were removed. He wasn't sure. Somewhere between 3 and 7. You're not sure? HUH?

I was not happy when I left the hospital a few hours later all bandaged up with a disgusting drain hanging from my chest. All I could do was wait and hope for clear margins and remaining lymph nodes.