Monday, November 24, 2014

The Attitude is Gratitude

Do you know that grateful people are happier? It is a scientific fact. People like Dr. Robert Emmons of UC Davis run psychological studies to prove it. Once I get through my back log of books I am going to read his compilation of studies and report back upon the evidence of how being grateful makes you happier. But, I have really important comedy books and WWII non fiction books that I've started first.

Given that Thanksgiving is this week I am trying to practice an attitude of gratitude. I'm currently in a bit of a tamoxifen slump (tired, achy, tight muscles, not sleeping through the night), but I find that documenting all I am thankful for will at least keep my spirits up.

Without further ado, here is what I'll be saying at the Thanksgiving table that I am thankful for.

Modern Medicine. I complain and curse a lot (A LOT) about tamoxifen. But, the more I research and the more I find out how recent all of the developments to breast cancer treatment are the more I have to be grateful for. I mean tamoxifen has only been around for 40 years. It's only in the past couple of years that they have increased the length of treatment from 5 to 10 years because they have seen that large of a benefit from extended treatment. As long as I'm not hot flashing, I'm thankful for it.

Modern medicine also helped bring so much joy into my family, in the perfect little being that is my niece. It helps fill my cell phone with photos; it helps my parents engage anyone who makes eye contact to hear about their new grandbaby; it completes my brother and his fiance's family.She has replaced cancer and the Patriots as top family discussions. It's awesome.

Access to healthcare. I don't care about your political beliefs. If your a cancer survivor you know how important it is for everyone in the country to have access to healthcare. And high quality health care at that. Living in Massachusetts you sometimes forget that the rest of the country doesn't have access to the same level of care that we have here (and my bias is showing). It's heartbreaking for me to read all the stories of those who have perished from breast cancer because they didn't have access. I hope in the coming years there are fewer of these stories.

My co-survivors. My support system. My cheerleaders who still support me in all I do. Those who listen thoughtfully to my frustrations. Those who celebrate with me for every survivorversary and encourage me to celebrate in whatever way I want. Those who keep pushing me to move out of my comfort zone. And those who always have time to look at pictures, eat cookies and share laughs.

My mom's mashed potatoes. Listen, my love of this particular food is well documented. I am so excited to eat my weight in them this year. I can't wait.

Happy Thanksgiving. Giving thanks will make you happy. How great is that?






Sunday, November 16, 2014

Promise Me-A book review

One of my colleagues/fellow breast cancer survivors lent me her copy of Promise Me; How a Sister's Love Launched the Global Movement to End Breast Cancer by Nancy G. Brinker. The 2010 biography/history of the Susan G Koman for the Cure foundation and it's founder. Regardless of your thoughts on the organization the book details out the changes in attitudes towards breast cancer, including calling it breast cancer, and changing from fundraising for all types of cancer to a specific type. And it is fascinating.

Did you know that until First Lady Betty Ford insisted that it be called breast cancer and not woman's cancer when talking about her diagnosis in 1974 it was considered almost taboo to say breast cancer? It wasn't until the 1970's that hormone markers on breast cancer were identified. And that Susan G Koman for the Cure was founded in 1982 after Nancy's sister Susan G Koman lost her battle to cancer at age of 36. The details of Susan's death are cancer battle are detailed out in the book. They are heartbreaking and familiar. Knowing that she dies when you are reading the book and the first detail of her only having a mastectomy and no chemo or radiation and no follow up for a hacking cough makes you thankful to have the screening and treatment that exist now.

I knew my chemo was relatively new (Taxotere) but didn't realize that FDA approval only came in 1996. That seems to so soon. Until I see that Avastin, the treatment for metastatic breast cancer and being trialed in Stage III patients, only got FDA approval in 2008. However, while reading the book Nancy Brinker does a good job of describing the importance of fundraising and funding trials. It's only been since 2000 that health insurance covers clinical trials. I can't imagine what it would cost to be in the PRESENT trial. The shots, plus the follow up appointments, blood work, urinalysis, MUGA scans, CT scans and bone scans. Organizations like SGK and American Cancer society help make these research opportunities happen and continue to identify and fund up and coming research. This book along with The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee make you so grateful for all the work and all the many woman who came before me and my cancer diagnosis. It is the main driver why I felt so compelled to enroll in the PRESENT trial. 

Also part of Promise Me were other survivor stories intertwined, including Nancy Brinker's. I found many experiences that have mirrored my own breast cancer journey and many experiences that inspired me and make you grateful to be alive. I enjoyed how Brinker defended pink and defended it being everywhere. She looks at the extent of the pink and they way it is now universally acknowledged that pink and breast cancer go together as a win for awareness. Getting the full history of how little coverage and support breast cancer once had, how you couldn't even call it "breast", to now makes me grateful that the world has Nancy Brinker's to fight for breast cancer. 

In Promise Me the idea of co-survivors. These are your support group who have been with you throughout your journey. You are the survivor at the center and co-survivors surrounding you. When I stop to think of the many, many co-surivors in my circle, it's pretty overwhelming. And a fantastic way to describe your support system. 

My favorite quote from the book however is as follows: 
It speaks to the tandem goals of survival and survivorship: You fight for your life. Then you live your life, regardless of what others think of your particular mode of self expression.

How unbelievable true that quote is. It is totally how I live my life now and I don't care if you think I own too much pink. I'm a survivor and it's my right. And it's fun.

Overall, I think the book is a great read in terms of the history of breast cancer, breast cancer treatment, cultural acceptance and fundraising. The details of Brinker's cancer treatment she doesn't like to detail but the history of her life and marriages are detailed out. As well as her rise to Ambassador under the Bush administration. These are parts that are sort of  interesting, but I read through more quickly. I would have liked to hear more of her personal cancer experience, but understand that she doesn't detail it out because she feels it unfair to those who don't have access to the treatment she did. Fair enough.

Very grateful that I live now when having breast cancer in the title of my blog is no big deal.





Monday, November 3, 2014

My Quadracep is now a Quintacep or maybe an Octocep

Back to reality after two weeks vacation and the reentry was a little rough. In classic pattern within two days of coming back from vacation I tests. This time I was up for a MUGA scan.

The MUGGLE Scan
Last Tuesday I had an early appointment with Nuclear Medicine. I go down, get my patient ID band and then the fun begins. I had a brand new Nuclear Med tech. One who was not familiar with my history of being a hard stick. Well, he tried once and after discussing how I worked there decided to call in the IV team. The great IV RN put the IV in my are quite quickly. I think out of the IV RNs I have now had 4 out of 7 put a line in me. No complaints from this end.

Well, there is a new protocol for the MUGA scans because the PYP (the pyrophosphate used to prep me for the Technetium so they can track my blood flowing through my heart) is part of a national shortage. Seriously, someone in America needs to start manufacturing this stuff and some Parenteral Nutrition ingredients too (sorry occupational hazard)!.  This meant that a small amount of my blood had to be drawn and I had to be given some Heprin based on my blood draw. The tech was flustered from having difficulty placing the IV that I couldn't get the best explanation out of him. Either way, I am now delayed for being a difficult stick and my actual scan gets moved back 45 minutes. But, I am injected with the Technetium and the heprin does it's trick (and bonus now I know I'm not allergic to Heprin). The tech goes to remove the IV from my arm and it decides it want to bleed for a little bit. He looks and me and says "Technically this is radioactive waste." Great. My blood is toxic waste. Well at least it's the week of Halloween maybe I can get bit by a turtle and then develop my nun-chuck skills and embrace my love of pizza {this is a Teenage Mutant Ninja Turtles reference}. He then places a tegaderm (almost like super sticky plastic wrap) with guaze to seal my arm. Then it's off to have 3 ten minute scans. And a nap. Apparently after two weeks of vacation difficulty having an IV placed is too much. Or it's more of a reflection on how common place this test has become for me. No freaking out and watching my heart beat or the PQRS waves. This is growth.

I did however spend the rest of the day trying not to cut myself (Opposed to the reckless abandon of which I usually walk around with). Didn't want spread radioactive waste around the hospital!

Growing and Octocep
Today is officially 18 months in the PRESENT study. Whoa. Both my oncologist, myself and the research RN were slightly amazed by that. I had 6 tubes of blood drawn without issue this morning. My veins decided they would cooperate. The joys of having only one arm to draw from. However, my blood work was perfect. Perfect. My oncologist is quite pleased with how I feel and my limited side effects. My MUGA scan is outstanding. My EF is 75% and she calls it A+ material.   Then I provided my cup of urine to prove that I was indeed not pregnant to get the shots. Then the lab lost my "Stat" urine cup. The research RN was not pleased. She attempted to track it down but in the meantime asked me to provide a new sample. Well, at this point it was an hour later and I had nothing. Not even an extra drop. I came out to start chugging water when she let me know, they had found my urine. Phew.

With everything confirmed the research pharmacy mixed my injections up and sent them up. Because it was super busy they let me have my injections in an exam room, and not in an infusion chair. Often it is nice to have the vaccine that is intended to prevent recurrence in the place where I had Chemo (I often end up in the same chair) because it reminds me how far of come and how far I need to keep going. The research RN remembers that I am still slightly anal retentive so she makes sure to make a perfect square. She cracks jokes about making sure she measures a 90 degree angle.  All four injections sting. But, only for the injection. They started to swell a little bit, as per usual. Currently (9 hours later) the 4 individual bumps have joined forces to great one super bump. My right leg has grown about a half an inch in height and it's throwing some serious heat right now. You know, the usual reaction that I have. I took some advil as instructed to keep the super bump from become the supreme bump and can ice if needed. We'll see.

As for now I look a little like Michelangelo (just on my overly muscular looking right thigh).