New Heroes

Did I mention that I have amazingly generous friends?

Last night a good friend from college and her husband invited me to attend the Irish Eyes are Smiling Gala in New York City (above is a photo of the two of us at the event). The event is a celebration of  the Kelly Cares Foundation and the major donors and people who exemplify the foundations principals of Health, Community and Education. The foundation was founded by Notre Dame head football coach Brian Kelly and his wife Paqui Kelly.

Paqui Kelly is one of my new heroes. She is a two time breast cancer survivor and through her battles she found that her overwhelming gratitude for the amount of support and the level of health care she received inspired her to create  the foundation to help those who were not so fortunate. The foundation supports causes that support Health Initiatives, Community Development and Educational and Educational Institutions and Programs. These initiatives included the Paqui and Brian Kelly Comprehensive Breast Center in the Saint Joseph Health System in Indiana. I was fortunate enough last night, to be able to meet Paqui. My friends let her know that I was a survivor, and we do what survivors do. She asked "How long?" I replied "3 years". She smiled and said "8 years". And then she said something to me that was so poignant and really resonates with me this month as I battle the FOR.  She said to me "Keep checking those days off, one day at a time". And that is what March has been about as I approach "Scan Day". Checking off one day at a time.

My other new heroes who I didn't get to meet, but were introduced to their story was the Enright family. The Enright family started the KeiraSTRONG foundation to help families of children undergoing treatment for cancer and life threatening illness. Another example of people so grateful for the support that they received during Keira's treatment for Leukemia (she was diagnosed at age 7, she is now 12 and in remission) that they created a foundation to help pay it forward.

The entire event left everyone inspired to be able to pay it forward.  It also ended with a intimate performance by Jon Bon Jovi. Folks, I was 15 ft away from the man. I was freaking out a little bit (nope, that's a lie. I was freaking out a lot and singing along probably very annoyingly to all those surrounding). It was a great way to cap the night.

So, as I continue to check of days of survivorship I will drink out off my new set of glasses every morning and think about how I can pay forward the amount of support and good fortune I have had. (And will continue to rock out to Bon Jovi while I bake). I have so many things to put in my gratitude journal, thank you friends. 

Keeping the FOR at bay

My bone scan, CT scan and EKG are on March 24th. My heart scan and last round of injection shots are March 28th. My crazy pants have been on since February 24th. Which means sometimes I am normal (well, as normal as I get) and sometimes I am obsessively checking the scar tissue at my incision site. The lead up to scan day also means that my house is spotless. I clean to de-stress. Today I cleaned my house for 6 hours. I scrubbed my tub, cleaned and reorganized my pantry, washed all the throw blankets, and steam cleaned my floors. I also blared some Bon Jovi while doing it. Boogie and cleaning makes for a great workout. 

I also like to schedule myself like crazy leading up to my scans; might as well channel the energy into productivity! In the next 3 weeks I will be having brunch with friends, taking a trip down to NYC to visit a good college friend, going to see a Bon Jovi cover band, celebrating a friend's birthday, throwing a baby shower, attending an alumni board meeting and trying out a new gym. 

And you know what helps even more, when you have great friends who send you this in the mail: 

A card and a magnet with my two favorite quotes. One from Stuart Scott "You beat cancer by how you live, why you live and the manner in which you live" and one of my new favorites that I found this past year "Don't let the FOR (fear of recurrence) ruin your QOL (Quality of Life)". I have hung them on my magnetic chalk board so that I can look at them every day and remember not to let the FOR take over.  

Better off NED 3.0

Today is 3 years since I finished treatment. 3 years. Holy crap.

I decided to wait to throw my party until I was declared NED at the end of March. I found last year, while I had a great time partying, having to go through multiple rounds of testing I really wanted to celebrate when I was all done. So I'll wait.

But...I couldn't wait to bake. Made a yellow cake with fluffy milk chocolate ganache. And I piped my scar on it.

I mean I still needed to celebrate. And I'm not going to lie, my belly hurts. I may have eaten a little too much cake. For dinner. But I'm celebrating.

I also ate a ham and cheese sandwich today. They were my savoir during chemo, one of the only foods that tasted correct, and one of my main sources of protein. And it was delicious. I think ham and cheese will forever be comfort food for me.

And my parents are taking me to brunch and I may have bought my entire stitch fix (delivery service of new clothes). Because, things need to be celebrated.

Madonna was right. If we took a holiday. Took some time to celebrate. Just one day out of life. It would be, it would be so great.

February 27th will always be NED day for me.

Cognitively Better than I thought

I feel like my brain doesn't function as well as it did pre-chemotherapy and I wondered if my continued cognitive difficulties-particularly word finding when fatigued, could in fact be blamed on chemo/tamoxifen. Well, apparently I am not the only person who wondered this as a team of researchers enrolled 170 women in the Los Angeles area in a 1 year study. Ganz et al recently published the study "Impact of Adjuvant Endocrine Therapy on Quality of Life and Symptoms: Observational Data over 12 Months form the Mind-Body Study" in the Journal of Clinical Oncology. This observational study followed woman in 3 groups: No Endocrine therapy, Tamoxifen and Aromitase Inhibitor (AI). There was a significant difference in the age of the woman in the AI group over the tamoxifen group, as expected. AI is used in postmenopausal patients.

The authors looked at patients after primary treatment (enrollment), 6 months into endocrine therapy, and 1 year into endocrine therapy. The study found during enrollment and one year later that all breast cancer patients had significantly worse quality of life (QOL) scores than a control group of concurrent healthy woman. Well that is a little bit depressing. But regardless of type of endocrine therapy it was noted that even one year after the completion of primary treatment (being surgery, chemo, radiation or any combination) continued to have sleep disturbances, fatigue and cognitive issues. Those are some pretty big items that are going to affect your QOL one year out.  I think the most important finding of this study is best described by the authors as follows:

Adjuvant chemotherapy contributes significantly to greater symptoms in the year after primary treatment, and combined with ET (endocrine therapy), is likely responsible for the failure of some chemotherapy related symptoms to resolve. 

Yikes. I hope that this is the first of many publications from the authors and that they continue to study if endocrine therapy continues to affect folks for the duration of their endocrine therapy. But, you know people are only on these treatments for 10 years.

The statistically significant results that this study found was that both the AI and tamoxifen group had significantly more cognitive problems than the no ET group, with AI patients report significantly more cognitive problems. Interestingly, the tamoxifen group after a year reported significantly more bladder issues than both groups. I won't go into further detail, but I will say that I can attest to that. Both ET groups had a higher rate of hot flashes than the non-ET group and the AI group was statistically greater than the tamoxifen group. The AI group also had a significantly high rate of musculoskeletal problems than either group.

So, it is scientifically proven that at least in my first year after treatment my brain didn't work as well as it used to. We'll see if that can be extrapolated out over the years of treatment. However, in my own independent study with a sample size of one, I would say my cognitive function might be doing better than I thought. I took a certification examination in November for which I studied by reading 11 textbooks (2 of which I had previously read) and just found out that I passed and earned a couple more letters after my name.

Perhaps the cognitive difficulties decrease after the first year? I'll keep my independent study going because I will have to take at least 2 more national exams for certification during the remainder of my time on tamoxifen. Hopefully, I will continue to have positive outcomes.

 Source: Ganz, PA, Peterson L, Bower JE and Crespi CM. Impact of Adjuvant Edocrine Therapy on Quality of Life and Symptoms: Observational Data Over 12 Months from the Mind-Body Study. J Clin Oncol 34. DOI: 10.1200/JCO.2015.64.3866. 

Sucralose, downgraded to avoid!

I distinctly remember when Splenda (Sucralose) came out. My mother bought a lot of it. I baked a pecan pie with it. Then I did some research into it. Sucralose replaces a couple of hydroxyl groups with chlorine molecules. Chlorine. Like the stuff you put into your pool. But, that wasn't enough to get us to stop drinking beverages with it. It was enough to get me to stop baking with it.

Then in 2013 the Center for Science and Public Interest (CSPI) in their monthly publication Nutrition Action Newsletter released that an Italian institute, Ramazzini Institute, evaluated the additive and it has been linked to leukemia and blood cancers in male mice. Yes, mice are not humans, but that was enough evidence for my mother and I to completely cut it out.

Now, the Ramazzini Institute has finally published their study in a peer reviewed journal that details out how exposure over time can lead to increased risk.

Although CSPI states that the risk of over consumption of sugar (obesity, heart disease, diabetes) is greater than the cancer risk from sugar substitutes, I think I'll continue to avoid it. I'll add in  those on the CSPI chemical cuisine avoid list too.

Now, if I could just cut down on the sugar....(the battle continues)

Practicing the art of comfort in, dump out

I have blogged a couple of times about the great LA Times article on how to be a comfort to people and not say the wrong things in hard situations. For a refresher, here is the great Op-Ed piece by Susan Silk and Barry Goldman.

Over the past couple of weeks I have found and witnessed that it is often against people's first reactions to practice comfort in, dump out. People sometimes value their own pain over those who are in those inner most rings and it's really hard not to put yourself into the center. It really is ok to not say anything at all, especially if you don't know what to say. Never is this more on display than at a wake or a funeral.

My boyfriend's mother passed away from pancreatic cancer a little over 2 weeks ago. It's a really sad way to meet someone's entire extended family. For those who were just outside the inner circle (the inner circle being: my boyfriend, his dad and his brother) for the most part people were practicing comfort in. My main job was to give my bf a dump out ring and offer comfort in. It involved me biting my tongue when one relative decided to tell us about his theory that a cure for cancer exists and that it's a global conspiracy between big pharma to not release it. Being the "dump out ring" meant it was also my fault that pants don't fit, sweaters shrank and shoes just look stupid. Practicing comfort in can also sometimes mean that you buy a brand new winter coat because your person in the inner circle has become so fixated on it that it becomes a point of anger. A quick trip to Macy's and you get a smile on a face for the first time in weeks. Not all things are that easy. Sometimes you cry together in the grocery store, or you have to just listen and not try to fix during a 3 hr rant about how much the universe sucks right now.

After the funeral my boyfriend's father told me that he couldn't imagine what I went through with breast cancer. I told him that compared to everything he and his wife had been through that it wasn't even on the same level. He said his two sister (both concurrently in treatment for cancer) said the same thing. People often preach that cancer is cancer. There are some universal experiences, but there truly are different levels. I was never faced with writing my own obituary or picking out the outfit I wanted to be buried in. I didn't have to go down those roads. I hope to not have to for another 60 or so years.

I will forever be grateful for being given the chance to get to know my boyfriend's mother before she passed. It will always make me sad how short our time was, but for right now that's something I'll only share with the next circle up.

Rest in peace Joanne.

A little follow up and a little research

Yesterday, I had my Larry Bird (33 month) follow up for the PRESENT study. It's just blood work, urine and physical exam. You know, the usual. But, what is super exciting is that I am at the 33 month mark for the clinical trial. The 3 year clinical trial. I was given the date of my scans (CT, Bone, Heart, Mammogram) and the date of the last round of injections. Next month I will celebrate my 3 years being NED. Wow.

My follow up was uneventful. I am still Iron deficient. No one is worried. I've been eating less meat and I've been running. Not uncommon. I'm still not deficient enough that I have to take iron supplements or have further tests. So a hamburger and some Grape Nuts (highly fortified cereal) will be in my future.

While riding the bus home from work, smiling about good blood work I came across an article stating that sucrose (sugar) consumption had been linked to breast cancer. My dream bubble filled with cookies shattered into a million chocolate chips. I then hunted down the research study.

The article I read was siting the research study by Jiang et al, A Sucrose-Enriched Diet Promotes Tumorigenesis in Mammary Gland in Part through the 12-Lipoxygenase Pathway, published in the January 2016 edition of Cancer Research. Basically, the group at The University of Texas/MD Anderson took mice who had been injected with triple negative breast cancer cells or breast cancer lung mets and then randomized the mice varying levels of sucrose enriched diets. The control group received 0 g/kg of sucrose, then 62.5 g/kg of sucrose, 125 g/kg, 250 g/kg and 500 g/kg. The study found that those on the higher sucrose diets (125, 250, 500) had an early onset of tumors although no information about the statistical significance is stated. The statistically significant results that the study did find were that the mice on the high sucrose diets had larger tumors than the control (no sucrose) and had a significantly greater number of lung met tumors. Therefore this study did show that the inflammatory pathway (12-Lipoxygenase as referenced in the study title) which is stimulated by the ingestion of sucrose may play a role in the growth and spread of breast cancer tumors. However, the authors admit that the knowledge on the pathway that was being studied was incomplete. It also was testing triple negative breast cancer (that without hormonal markers). And it was also mice. And the results of the mice fed 62.5 g/kg were not mentioned.

Very interestingly, the mice on the higher sucrose containing diets did not gain statistically more weight than the control mice. Therefore, overweight-a known risk factor for breast cancer, cannot be the cause.

What does it mean? Well, it is difficult to ascertain what the results in a human will be from animal studies. Also, the mice were already given breast cancer so it does not address sugar consumption and the cause of breast cancer. It does however give me pause coming off the holiday season were I definitely over indulged in the sweets. It also makes me pull up my dietitian boot straps and start working towards getting back to the American Heart Associations goal of 24 g of added sugar. Which, I have tried to do every year as noted by my post from 2014. But, when I look at today I only had 12 g of added sugar. So, it can be done.