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.

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).

An Epic Love Story

One morning of Spring 2012, I got a phone call from my mother on the way into work. She had talked to my brother and he had some news. He had finally met "the one" and was going to get engaged and start working on a family ASAP. My mother was calling me to break the news before I spoke with my brother so that I might not be a giant jerk to him and to try to be a supportive sibling. I had a history in the past of scaring the crap out of my brother's girlfriends (trust me, they earned it).

June came and my brother got engaged. I was so happy for him and plans were made for his fiance to come meet the family. Around this time is when I found my lump. I had a trip to a good friend's wedding and their visit coming, so I put off having it checked (as well documented on this sight, it worked out).  By the time my brother and his fiance showed up in July I was anxious to meet her. After meeting her, we knew he had found the missing piece to our family. She understood him fully, called him out on the same things we did as a family and had a wicked sense of humor. To top it off, she was a sports fan. Although her taste in football teams leaves much to be desired, we were willing to over look it as she makes a great addition to our family.

Then came August 8, 2012 and my brother and his fiance despite living far away were part of my key support system. And while I was undergoing all of my own treatment, little did our family know what they two of them were going through. The focus was on me. In the Spring of 2012 my brother's fiance started doing hormonal treatments to see if they could help increase her fertility. She was already 40 by this time and with a history of endometriosis. By the time I finished treatment in February 2013 the multiple rounds of hormonal therapies hadn't worked. Then came directed sperm and other unglamorous procedures.  All were unsuccessful and the emotional toll was piling up for both my brother and his fiance. Their desire to have a child was palpable.

Then there was the pressure. My parents have always said "If it happens, we'd love to be grandparents, but if not we're ok.". We've always known that they were liars. I've had chemo. I take tamoxifen everyday. I get vaccinations that are teratogenic. This all boils down to one undeniable truth: I can't have children. Knowing this, the perceived family pressure seems to mount.

More treatments, injections and ungodly medications for my brother's fiance through Spring and Summer 2013. After  the decision was made to do IVF, fertilize the egg outside the body and then do implantation. After months of more hormones and injections, all through the fall, led up to very dramatic weeks in December. The egg harvest. They start with the retrieval; 18 eggs. Then comes the watching. There were multiple text messages sent to my mother and I to update on how the eggs were doing. Genetic testing was done. Then came the most glorious early Christmas present for everyone. There was one egg. One. One basket. One egg. It was good enough for all of us.

February 2014 and after a lot more hormones, blood work and tests came implantation. On a Wednesday. Then came very frequent blood tests. I have never watched  HcG levels so closely. Then came the confirmation and the overjoyed phone call from my brother. It worked! I found out that every Wednesday as they clicked off more weeks on the pregnancy my brother would drink a beer and share it with the dog. It seemed to be a good luck charm and his fiance's pregnancy kept progressing. We got a great text one day "It's a girl!". We were overjoyed as baby girls, if born early, do much better than their male counterparts. We got to see my brother and his fiance in May and witness the baby bump. His fiance had to continue with hormonal injections and suppositories, but everything looked great. Then came 28 weeks and a little celebration of viability (for those with advanced maternal age). By this point Auntie had blown her budget. There were onsies, strollers and and a stuffed octopus that keep socks that needed to be sent.

Then my brother's fiance had a vertigo attack and fell. She injured her back and didn't like how the pain medication decreased fetal movement. So she didn't take the meds and accepted being on bed rest. And by "accepted" I mean agreed to work from home and would run conference calls, return more e-mails a day than I get in a year. But, baby was fine and the end was getting near. The baby was breech and the c section was scheduled.

Cut to this week. Somehow, we finally got here. My brother was totally out of his mind waiting for the arrival of his daughter. He forgot which day I was flying in (we remedied it and he got me from the airport). He text me the wrong address. He just couldn't wait to meet her. His fiance was hanging in there. The amount of discomfort she was feeling was unfathomable. She would turn bright red and change position, but nary a complaint just encouragement for the little one to arrive. The amount of physical and mental toughness that she demonstrated through out the two year trial for a baby is admirable. If I ever own a football team I am drafting her to play. I threatened to posey (think a seatbelt that keeps you in bed) my brother's fiance when I got to spend two days with her before the delivery as she wasn't doing a very good job resting.  I didn't do the best job of distracting her, but thankfully a Law and Order SVU marathon helped 5 hours go by.

Then came Wednesday, October 22nd at 12:54 pm. The greatest day in O'Brien history. Baby Addison arrived. The joy is immeasurable. I will forever be grateful to my brother and his fiance for letting me be there the day she was born. They worked and wanted so hard to have this child and to be able to be there to see all the tests and treatments turn into her was beyond amazing. They haven't invented the word yet to represent that feeling.

 This tiny little human being is the manifestation of love, joy, strength, and perseverance.

To paraphrase Sally Brown (from Peanuts) Isn't she the cutest thing? She is so tiny and snuggly and she melts your heart the second she looks at you with her big blue eyes. You know your a lost cause when she she squirms why you hold her to work that arm out. I'm a goner. I cried all the way through take off on my flight home. I've never been more grateful to have an entire row of an airplane to myself.

Congratulations to my brother and his fiance. She will never doubt that she is loved.

Here's to Another Year.

Happy 33 years to me.

Appreciating having another year to fully live my life. I've been celebrating for a little over a week. The ladies at work made a couple of days of delicious baked goods, I had brunch with good friends and my parents have taken me out for a lobster dinner. And I also took the time off from work.  This meant that I could sleep for 10 hours last night, get up and run 7 miles and then have pie for breakfast. A la mode of course. While out for my run I was laughing to myself as I now go for 7 miles. I used to only run 7 miles in a whole week. But, my legs feel better with long slow stuff. And for a little birthday magic I completed the 7 miles for the first time under an hour. It was great weather and many of the leaves have changed to bright colors. It was a great run and I appreciated being able to continue to do it.

I'm on vacation for a couple of weeks. A couple of weeks. Never in my life have taken this much time off all together, but there are people to be seen, places to visit and new family members to meet. My boss had encouraged me to take three weeks off. I explained to her that recurrence of breast cancer happens in a higher rate in the first two years, as a young cancer survivor I'm at higher risk of developing a secondary cancer and that I keep those thoughts in a lock box, but always feel that I need to keep ~2 weeks of earned time in my bank just in case. It's the reality of my world.

But, today is not for opening the lock box; it is for eating treats and returning text messages, phone calls, cards and emails wishing me a happy day. And maybe a little boogeying in the kitchen.

Making Strides Against Breast Cancer Boston

My Mother and I were invited to join team Mary Sue's Spirit in memory of my mother's cousin who passed away after a brief but ferocious battle with breast cancer.  We decided to participate in this year's Making Strides Against Breast Cancer Boston, and boy and am I glad we did. The event was amazing, and they really celebrate survivors.

Mom and I arrived before some of the people we were walking with to check out the event and I had noted online they have a survivor tent. Well, as I registered as a survivor you check in with the tent. They give you a sash to wear at the walk that says "Survivor" on it and they ask you "how long" I said 1.5 years (the math was easier) and they give you a sticker to wear with your sash. There was a gentleman in front of me who noted that he was a 8 year survivor. He was also rocking a pink mowhawk wig. It was great. In the survivor tent they also have stickers and gifts for the caregivers. After putting the sash on, the volunteer asked me if my mom was my caregiver. "That's my mom. Absolutely she is my caregiver.". Mom happily wore her caregiver sticker all day.

Here we are after we got our swag taking a photo. They had signs you could use. I was very partial to this one:

 We met up with our group and picked up our tshirts. We were walking with a friend whose mother is a 12 year breast cancer survivor and she had many stickers for those who she knew who lost their battle. Everywhere were peoples names for those who were fighting, surviving and those who lost their battle. Early in the event mom and I came across a group of young people who all had matching shirts for Team Irene. Then we looked at the dates on the shirts. She was 20 when she lost her battle in May. 20 years old. Motivation to walk was everywhere.

The back of the team Mary Sue's Spirit shirts read "With Brave Wings She Flies"

Walking around with a survivor sash was amazing. One fellow survivor we found was just yelling "12 years" everytime someone pointed her out as a survivor. 12 years. Sounds good. At one point mom and I fell into walking pace with another survivor. She has been cancer free for 7 years and today was her birthday. She carried a cowbell with her. She said she felt compelled to continue to do the walk every year because when she was in treatment so many people walked for her and that she feels there are so many people for her to continue to walk for. She also pointed out what many others did today. "You are so young." My only response is "Yes I am". We also talked about surviving for more birthdays and compared notes about MRI dye vs CT scans. New friend in 30 seconds or less and already bonding over follow up scans. Love it.

It was perfect weather. Blue sky, zero clouds and in the 50's. I convinced (or shamed) my mother into walking the 5.7 mile route. It was too much fun to be surrounded by so much pink, hope and celebration.

On our walk home I kept my sash on, I earned it. When we were crossing the street a woman in her car stopped at the light gave me a big thumbs up. Another person on the sidewalk read the sash and gave a great big smile. The best though, while waiting at another cross walk a woman who had a green light started beeping her horn to get our attention and was fist pumping to celebrate. I think I shall wear my sash at all times.

A celebration of breast cancer survivors while raising money for research, treatment and support. How could it not be great? It was fantastic to see so many survivors out there. They are all superheros.

And if you haven't seen this video Truly Brave for the tiny superheros, totally worth the watch.

Another Boobtober

I walked into the office yesterday and welcomed everyone to boobtober. Pink is everywhere and the newspaper is running articles on awareness and kick ass survivors.

Today I celebrated Breast Cancer Awareness month with a follow up appointment with my radiation oncologist. I started with a nurse I had not met before. She was great. We chatted about lymphadema when she asked which arm I needed to have my blood pressure checked in. She wanted to make sure that I knew that it meant no blood draws, no flu shots, no IV's, no blood pressure checks in my right arm for, well, forever. She also made sure to remind me that if I ever needed to be hospitalized I would need a sign on my bed. I assured her that I have been hospitalized (a little over a year ago) and they made sure to hang the sign for me.  She also cracked a couple of jokes and we talked about how important a sense of humor was. She told me how she would go with her to her friends infusions and they would just giggle and the appointments always lasted half the time than when her stern husband went with her friend.

Then she handed me my johnie. And guess what? It wasn't pink or long! They got new johnies and for us breast cancer folk they are short (only go to the waist) and they were a nice teal color. I cannot tell you how being in a pink johnie gives me a little shot of anxiety and these new johnies made me skip right out of my appointment. It's a little item, but this update made me feel like I was really putting some distance between me and cancer.

My appointment with my Radiation Oncologist was great. She said to her everything looks great. She loves how I am wearing my hair and she will follow up with me in a YEAR. No longer every six months. She also looked at me and said "I can't believe it's been 1 year and 7 months since you finished. Amazing". You're telling me doc.

Unforgettable Phone Calls

While talking to a case manager and fellow breast cancer survivor she told me the way I said "hello" to her sounded like the automated voice mails form the hospital. This in turn set me off on repeating the entire message we usually receive. We chuckled and she mentioned that she was expecting one of those calls soon. She was due for her mamomgram and was going to see the NP for the breast surgeon. I told her I will never forget the NP because she is the one who called and told me I had cancer. She told me she was the same and we compared stories. At this point it has been 5 years for the case manager (CM) and 2 years for me. You would think it happened yesterday with the amount of detail that we both could recall.

CM: I remember she called me I was in the parking lot on the way out of work. She asked me to come back in, I said "No, just tell me". She told me. I said "ok". I got in my car and went to visit my husband's grandfather. He had raised my husband and when I went to see him, he let me know that he had just found out he had lung cancer with mets to the brain and his time was limited. I sat and talked with him, never telling him the news of my day. I met my sister and her family for dinner. I hadn't told my family yet, so I couldn't tell her. I finally drove home and found my husband sitting on the porch. I looked at him and said "Do you want Papa's news or my news first? Because we both have news". He asked for mine and then Papa's. He to this day says it was the worst day of his life. It then took a couple of days to gather my boys together because one worked the day shift and the other the night shift. Finally two days later at 10:30 pm I got them both together. Because they were boys they didn't know anything about mamograms and I had to answer a lot of questions. Particularly from my younger son. Throughout the next week I told my sisters and then it was time to tell my mother. I visited her at my sisters home and told her. She asked me if that is why I lost so much weight. I was mad. I had worked my butt off for my 50th birthday to lose 25 pounds. I assured her that it was from Weight Watchers. And you?

I told CM my story. I told her how I was at my mother's and had waited until my father came home and was done telling us a story before I told him. My heart has never beat so hard. I felt like I was disappointing my parents because I had cancer. I told her how I sent my father out to go get chocolate and the owner of the market told him he was a cancer survivor from Lahey Hospital (my hospital) too. I told her about calling my brother and he still being at work (damn time difference) and not wanting to tell him, but doing so upon his insistence.

It is funny that CM and I discussed this. 2+ years since the "phone call" from the NP. This year around my diagnosis day anniversary people started telling me about how they received the news. Barely anyone told me about how they reacted a year ago. I found out that I ruined the remainder of a friends trip. I found out how many of my colleagues cried when my boss called them. My friend who I called while she was driving and asked her to pull over recently told me how she sat in the parked car for nearly 20 minutes trying to process the news. When you are in the fight you have to focus on you, but years later it is amazing to see the ripple effect my diagnosis of breast cancer had and the same way it rippled for CM. We both live different lives but have such as strong bond over shared experience of breast cancer. Having breast cancer friends splattered through out where you work does wonderful things for piece of mind.