Special Thanksgiving Update!

Happy Thanksgiving!

I wanted to take this holiday opportunity to provide an update on Nicole's progress but also say thanks. Thanks to all of you who have provided support, thanks for the prayers and thoughts, thanks to the doctors and nurses, thanks for the food, the gifts, the books. Thanks for the Chick-Fil-A at the hospital. Thanks for helping to make a very scary experience a lot less so, and thanks for being great friends and family. Thanksgiving can sometimes come and go without a thought to the importance of the day and how we are truly blessed, but Nicole and I recognize that we have many blessings and all of you are on that list.

Because we are most often asked about Chemotherapy and because Chemo has such a multitude of quirks and gifts, I thought I would do an update FAQ style...

What's the status?

Nicole finished chemo on Nov 10th. 4 treatments, all done. We meet with the radiation oncologist on Monday and she'll start 6 weeks of radiation soon after.

Does it hurt?

No, chemotherapy itself doesn't hurt. If you've ever had an IV, you've experienced what it's like. The chemicals used can have some minor side effects like subtle burning at the injection site, or in Nicole's case, phlebitis, which is the swelling of the veins used for the chemicals. Each time she had treatment, they chose a new vein to keep the swelling and pain to a minimum.

Do you lose your hair?

Yes! Lots of it! I still find long blonde hairs attached to household objects. They have discovered many miracles in the treatment of cancer, and the way to keep your hair is NOT one of them.

Does it make you nauseous?

Yes and no. Chemo is so specific to each person and how their system handles the drugs. In most cases, the docs provide ample anti-nausea drugs before, during, and after the treatment, so it's not much of an issue anymore. Nicole didn't get sick one time, but described her post-treatment stomach as 'rot gut.' While she never threw up, she also said the best description is your stomach with a hangover, where you just don't really feel like eating or drinking anything.

Do you get tired?

Yes, though I don't think it's an acute symptom. From an outsider perspective, it just seemed like Nicole would feel normal one day, feel tired the next, and there wasn't much of a pattern to it. She had trouble sleeping from the steroids she had to take, so she always had an erratic sleep pattern the days immediately before and after treatment, but then almost seemed normal after that.

Any other symptoms?

Nicole would tell you that the biggest side effect of chemo wasn't from chemo at all, it was hot flashes from the Depo Lupron she took. As we mentioned here before, she used Depo Lupron as a way to put her ovaries to sleep to help with fertility, and that means she got an early preview of menopause. She is very anxious to be done with that part of the process and be able to sleep under the covers again!

Also, she says there is a definite symptom called 'chemo brain.' She noticed trouble remembering things and some cloudiness that wasn't there before. That aspect of chemotherapy isn't entirely understood yet, but there are research studies underway to determine exactly what effect it has on cognitive abilities.

Happy Thanksgiving! Take time to look around the table today and say a word of thanks between bites of turkey!

Donations!

Hey everyone,

As I mentioned previously, many of our friends have created teams for Komen Race for the Cure and Avon.

The links are below. Please support one, some, or all of the teams. Thanks!

Also, for those in Charlotte, there are two upcoming happy hours to help raise money and support Nicole:

Sept 22nd @ Crave, 5:30 - 8:30

Sept 23rd @ Mortimers, 7pm

Nicole and I will be there, and look forward to seeing anyone who can come out!

http://charlotte.info-komen.org/goto/dolladollabills

http://charlotte.info-komen.org/site/TR?team_id=138288&pg=team&fr_id=1833&et=W_910Tpa1YoZrklgcGYaUA..&s_tafId=54613

http://www.avonwalk.org/goto/Kerry.Thomas

www.avonwalk.org/goto/beccawalke

http://info.avonfoundation.org/site/TR/Walk/Charlotte?px=5712187&pg=personal&fr_id=1980

1 down, 3 to go...

The first chemo treatment is over! Nicole is waking up as I type from a 4-hour nap, but besides the grogginess she feels perfectly fine right now.

We had one minor complication today, though at the time it sure seemed more than minor. A small percentage of patients receiving the drug Taxotere have a strong allergic reaction, much like what you would experience if you were allergic to a bee sting. And you guessed it, Nicole was one of the small percentage.

15 minutes into receiving the first drug, everything was fine and spirits were high (as high as you can get in a chemo treatment room, I try to crack as many stupid jokes as I can). I got up to refill the water bottle, and by the time I got back the nurses were sprinting in Nicole's direction. Apparently it happens that fast, she was fine when I stood up, and 20 seconds later began to have tightness in her chest, have trouble breathing, start to go numb, and then start to black out.

Though we know now it was nothing serious from a medical standpoint, it certainly registers very high on the fear scale, and Nicole and I were pretty shaken at that moment. The doctors and nurses were great, and within a few moments had different medications flowing through the IV to counteract the allergy, and things were fine within minutes. They told us they can never know who will react that way, but once they do it can be controlled by simply taking medications (like Benadryl) before the Taxotere, so the body can relax and receive the drug. Once they knew, she was able to take the drug without much problem (and managed to nod off to sleep).

So Nicole has been napping all day because of the heavy anti-allergy drugs she received, just like anyone else would react to doing a few shots of NyQuil. Other than that, it was a pretty standard day of chemotherapy!

Thanks again for all the support. We're off and running...

Chemo...

Hello,

Well it's been over 2 weeks since I last posted, and we're officially moving onto the next phase.

First, we confirmed with the Oncologist here in Charlotte that chemotherapy was indeed the recommended course and the safest way to proceed. While nothing is ever certain with cancer, we decided that the small decrease in recurrence rate shown through trials was worth the short-term impact. Nicole will have 4 treatments of 'TC,' every three weeks, starting Wednesday the 8th. That means Nicole is going to need all of your support more than ever over the next 3-4 months as she encounters all the typical joys that chemo brings.

Second, we met with the fertility doctors again, and came to a crossroads deciding how we would help our chances at having kids. We could freeze eggs or try a drug called Depo Lupron. The Depo Lupron has been used in a few clinical trials and showed promise at 'protecting' the ovaries during chemotherapy. Essentially, the drug sends the ovaries into temporary menopause, which acts to preserve the eggs from the harm of the chemotherapy drugs. For many reasons, really too many to mention here, we decided we would go with the Depo Lupron, and Nicole received her first injection yesterday. If all goes according to plan, Nicole will only take that throughout her chemotherapy, and then within a few months afterward should get back to normal as her hormone levels return to that of a typical 32 year old.

Finally, I hope everyone is gearing up for Breast Cancer Awareness month in October! We have many friends and family who have started teams in several races/walks and are already raising so much money. We can't thank everyone enough for jumping into the fight, and those of you who haven't signed up or donated, it's time to dust off the running shoes and reach for the pocketbook. We're all in this together, and if we can prevent one other person from going through this, it's well worth our efforts. Later this week, I will be posting links to the different teams supporting Nicole, please check back and help us beat this stuff.

Think Pink!

No more surgery!

Well Nicole has emerged from a second surgery on Tuesday and today was blessed with 'clean margins' from Pathology. That essentially means they have removed enough tissue that the tumor can officially be considered gone! Nicole is sore but feeling much better already than the last surgery.

We meet again with the surgeon tomorrow and expect to get a hug and a hand-off to the next stage.

Much time and many treatments ahead, but for now, we'll take the positive tone and run with it.

Thanks!

Sloan-Kettering Visit

Nicole and I are back from a trip to NYC and Sloan-Kettering. Sloan has one of the best cancer centers and research facilities in the world, so we figured why not have an enjoyable few days in the city and get a second look from Sloan?

We sent all the same records, reports, and films from the Charlotte docs up to Sloan. The doctor was a nice guy and ran us through everything from the beginning, providing his commentary and experiences as he went. We really didn't learn anything new from him, just a different perspective. One major update we did pick up from him....

was the arrival of the Oncotype score, which we had sent to Sloan and received while there. Nicole scored a 25, which is pretty much right in the middle of the chart, and that translates to an average recurrence risk of 17% ( I stress 'average,' the range is quite broad and goes from 13 - 20%). So faced with a 17% average recurrence risk, and the knowledge that Chemotherapy along with Tamoxifen could take that down to 10-12%, the doctor there recommended chemo, and it's looking increasingly likely Nicole will have it.

So with that said, tomorrow is surgery #2, a cleanup of surgery #1. After that, she will be left to heal for a month before treatments begin. 4 rounds of chemotherapy, one every 3 weeks, followed by 6 weeks of radiation, followed by years of hormone drugs. The timing and sequence of treatment isn't official, but it likely won't sway much from the above.

As for the blog, you can see from the timeline, my posts will be less frequent as time goes by. We will be doing our best to live a 'normal' life around these treatments, and there will be a certain routine for awhile as Nicole returns to work and we check off the necessary milestones. I will definitely keep everyone updated as things change and as to Nicole's reaction to treatments.

Thanks for the continued thoughts, prayers, and support. I certainly feel like Nicole is battling this thing with an army beside her, and I have no doubt the optimism created in her mind from all of you can only help Nicole decide she's just not going to lose.

More meetings, more waiting...

We met with the surgeon and the oncologist this week and are getting closer to a treatment plan.

The surgeon confirmed that Nicole needs about 3-4 more millimeters of tissue removed from the one edge of the tumor for it to be a 'clear margin.' In the most simple explanation, they want to have enough space between good cells and cancer cells and they didn't get that during the first surgery. So Nicole will head back to surgery on 8/17.

In the meantime, the tumor has been sent to California for a test known as Oncotype DX. It is a new procedure that's only been around a few years but is gaining wide acceptance. The tumor itself is broken down into 21 genes and their biologic activity is tested. The test is able to gauge based on the activity of the genes in the cancer whether it's considered low, medium, or high risk of recurrence and aggression. The test is enough of an accurate predictor that, if Nicole lands in the low score, she will not get chemo. Similarly, if it's a high score, she will definitely get chemo. The moderate scores are the gray area, and if Nicole's score falls there, the decision will likely come down to a discussion between the docs and Nic about pros and cons.

So while we wait for more tests and results and surgery, we're headed up to NYC for some R&R but also for a complete second opinion at Sloan-Kettering. Nicole's case is relatively simple as far as breast cancer, but the decision to get chemotherapy still remains unclear. Having another set of doctors examine everything can only help to increase our certainty and comfort with what's next. But despite the 'hurry up and wait' nature of this process, each day that goes by gets us closer to a clean bill of health and I can turn this blog into one about weather and sports!

Thanks again, and let's hope for a really low Oncotype score!

Pathology Results

Hello,

Nicole spoke to the surgeon a few minutes ago, the news was mixed. The good news first of course: the lymph nodes were still clear.

The bad news is the tumor was slightly bigger than they originally thought, and it means Nicole is headed back for more surgery to ensure the margins around the tumor are definitely clear. The process of removing more tissue after the initial surgery isn't necessarily abnormal, but of course it's not the result we were hoping for.

We'll be meeting with the oncologist next week to discuss the treatment, and based on the results to date, find out whether he recommends chemo or not. We have our fingers crossed.

Nic is recovering well from the first surgery. She's still sore and can't do much with her right arm, but otherwise is normal. She thanks everyone for the cards, flowers, food, and positive reinforcement!

Surgery!

Hey all,

We're home! Nicole is napping with a few ice packs and some grogginess. The results: 1 cubic centimeter of tumor (as the surgeon said, a 'marble') removed and 3 lymph nodes with NO SIGN of cancer.

Of course there is still a chance extensive pathology will show something worse, but for right now we're going to celebrate the news and enjoy the moment. We will see the surgeon in a week for a follow-up appointment and he'll be able to say definitively whether the lymph nodes were clear. After that, a few weeks of healing then her treatment will begin.

I think Nicole's parents and I are going to join Nicole in a nap very soon, but thank you all so much for all the encouragement, positive thoughts, and prayers.

Surgery Date

Sorry I haven't updated in a few days, but frankly there hasn't been any news to post. We do have an official surgery date of 6/16 (hard to believe it's only been a month).

Nicole will be having a lumpectomy with sentinel node biopsy. That means they'll take the tumor and some surrounding tissue. While they have her under anesthesia, they also take the first few lymph nodes in the chain and test them right in the OR. If the first few lymph nodes show cancer, they will remove up to a dozen more lymph nodes, as that's the typical process the cancer would take to spread.

The surgery is somewhat routine in the grand scheme of things, Nicole won't have to spend the night in the hospital and should be home by evening. Of course we're hopeful the lymph nodes are clean, but even if they're not we're going to be anxious to get this fight going soon after. Typically they will give her 3-4 weeks to heal, and then the treatment (chemo/radiation) begins.

Thank you all for the constant support and well wishes!

Benign!

Happy 4th!

Got a piece of good news to share for the holiday. The other biopsy came back benign! Though it doesn't change much for the treatment plans, we'll take all the benign we can get right now!

Slowly....

This process is painfully slow...

Nicole had her ultrasound biopsy on Tuesday. Originally they saw 3 'spots' on the MRI that concerned them, and the ultrasound was only able to find 1 of them. They did a biopsy on that spot and we're once again waiting for results.

Even if that spot is positive for cancer, it was a quarter-inch or smaller, and the other 2 didn't even show up. That lack of news at least tells us that the cancer is still very small and local, and that's just reemphasizing that it's very effectively treated.

We also saw the fertility docs on Tuesday and began lining up our soldiers to increase the odds at having kids someday. Who knew putting a few eggs on ice could be so expensive?!??! Learning something new everyday through this process, that's for sure.

Nicole also met with the Oncologist for the first time today, the guy who will run the treatment once Nicole is through with surgery. Again (broken record), we learned nothing new from him, he said that he won't be able to put a treatment plan on paper until he sees the final results from surgery. He did give some encouraging words about being able to have kids after cancer, and didn't seem at all concerned that Nicole would have a problem due to the treatments. Of course we know there are many factors at work, but it feels good to know the docs feel it's very possible.

I wish I had more to report, but unfortunately we are stuck solidly in the waiting game right now. Stay tuned...

Quick Update

Well we found out another piece of the puzzle today.  Nicole tested negative for the BRCA gene. BRCA is commonly called the 'breast cancer' gene because women who test positive for changes in this gene are the most likely to get breast cancer.  With BRCA, you are much more 'destined' to get cancer than, like Nicole, just having some seriously bad luck.

A negative test means the likelihood of recurrence is much less than if she were positive.  In most cases of a positive test, the doctors will recommend a double mastectomy because the recurrence rate can go as high as 60-80%!

Again, this is a positive development that keeps all treatment options available, and we're one step closer to having a plan to beat this thing!

MRI...

Hello,

Well each day brings new updates and swings of emotion, and yesterday Nicole had her MRI of both breasts. The radiologist was able to call her as she was reading them and said they show two additional 'spots' of concern in the breast, and a lymph node that might be swollen.

It's obviously not the news we had hoped for, but it also shows that any spread of the cancer at this point is at a very small level and very containable. There are more tests upcoming. Ultrasound will be done on these new spots Tuesday, and if they show up on ultrasound, she'll have them biopsied on the spot and sent to pathology.

What does this latest development mean? Even if these are proven to be positive for cancer, they will still consider the cancer local and early stage. If the lymph node is positive, they will likely remove all the lymph nodes on that side of her body and she'll have chemotherapy. If the other spots in the breast are positive, they will likely recommend mastectomy as well. Again, it's all speculative at this point so it's not fair to leap to conclusions, but with each new piece of the puzzle we're able to narrow down the pathways.

We are disappointed in this latest curve ball, we had definitely hoped to avoid chemo, but both of us are just anxious to get moving on a plan, whatever that might be. Nicole seems to be doing better than me, just because I'm so anxious to get into the fight at this point. I'm thankful for their thoroughness in diagnosis but the waiting is maddening and Nicole and I both have our moments of frustration. The bottom line is that they want to be as cautious as possible and kill every last cancer cell while they have their chance, and that's a very good thing.

On a positive note, I keep telling Nicole that regardless of what comes of the following weeks, she will be healthy and cancer-free by Christmas, and that makes us both feel better and keep our perspective. Nicole is headed for Michigan tomorrow for a long weekend of no doctors, no tests, no Steve, and hopefully some cooler weather. I am going to be in Charlotte trying to make it a few days without Googling breast cancer articles, which is pretty tough these days.

Thank you all again. Nicole says 'hi'...

Quick Update...

We spent the entire afternoon meeting with the team of docs and nurses, a really neat program that allows you to get a second opinion on practically everything. Nothing really new from the docs, we still won't know the course of treatment and exact stage of the cancer until the surgery, which at this point is likely within 2 weeks.

We did find out one really good piece of news today...the cancer tested positive for estrogen and progesterone, and is HER2 negative! All that means to us is the cancer cells need hormones to grow. You turn off the hormones, you turn off the cancer. This is a great development and means that all the treatment options are still on the table, including the potential to avoid chemotherapy altogether (though there is still much to determine so we're not getting excited just yet).

Interesting side note that I found fascinating. A tumor the size of 1cm (about the size of Nicole's), growing at an average rate, would have been growing in her body for 10 years! That means Nicole started working on this little surprise in college! And you thought she was studying...

The meetings begin...

Hello everyone,

You are all going to tire of hearing me saying this, but thank you again for your outpouring of support. Nicole and I have been overwhelmed with the information and offers to help. Thank you all very much.

We just returned from the initial consultation with the surgeon. I'll say upfront that we don't really know anything more than what we did on Friday, but we are beginning to funnel the information and develop a clearer picture of the near and distant future.

Today we saw numbers on paper, and according to the somewhat crude measurements obtained from the ultrasound, the tumor appears to be about 1 cubic centimeter. Combined with the preliminary films showing no signs of lymph node involvement, that is VERY good news, and likely lands us in the very early cancer stages. The surgeon said the skin depression that we see was a gift, because the tumor is small enough that, without the outward sign, we may not have caught it for some time.

All of that said, there are still so many unknowns. We are waiting on the hormone results from the biopsy, which will likely arrive tomorrow, and the MRI on Wednesday of both breasts. By Thursday, we should have a much clearer and accurate picture of the size and extent of the existing mass. But until the surgery, and the physical removal of lymph nodes and test of tissues, we won't know anything for certain.

Tomorrow we have a 'multi-disciplinary clinic' scheduled. That's a fancy way of saying we get to have a discussion with a whole roomful of doctors, all of which enter the process at some point for cancer patients. We will simultaneously get a second opinion from some fresh eyes and be able to fire dozens of questions at them. MRI on Wednesday, results on Thursday, and more blog updates from there.

The process is fluid and each day reveals some new data, but we certainly are cautiously optimistic by what we've seen so far. Keep the thoughts and prayers coming!

Here we go...

Hello everyone,

Nicole and I first want to say thanks for everyone's support thus far, we love you guys!

A few months ago Nicole noticed the skin changing on her right breast. There was a distinct 'depression' of the skin over time. She showed me about a month ago and I just said go get it checked out and be done with it.

We got the diagnosis about 3 hours ago, invasive mammary carcinoma, aka breast cancer. The problem with breast cancer is that there are so many different kinds and types and treatments that we don't know what step 2 is, other than more doctors and tests and anxious times.

As of me typing this, I just got off the phone with the Radiologist, and he said a few things:

1. The existing tumor is small.

2. There is no evidence of lymph node swelling

3. This diagnosis is consistent with 'intermediate' cancer - meaning it is not the most aggressive.

All of these are positive. Combine that with the fact that young, strong, healthy women always beat this thing, and there's a lot to be thankful for.

According to the radiologist, we already know who the surgeon will be, and will be meeting with a host of specialists over the coming weeks to determine the status of the cancer and the best treatments. During surgery they're able to test a lot of the surrounding tissues and lymph nodes, so we'll know even more later.

So for now, that's really all we know. I will be updating this regularly to keep everyone in the loop, so check back on us from time to time.