It is human nature to compare your circumstances to others. Cancer survivors/fighters are the same way. I always find it fascinating to watch the people in the oncology waiting room who feel the need to find out why everyone else is there; almost as if they want to establish where they rank in the waiting room hierarchy. I remember a distinct conversation between a man and a woman who were seated near each other. The man was by himself and the woman had her daughter with her. "What are you in for?" "Lung Cancer" "What stage?" "Three" "Oh, I have stage four...." "Well this is my second cancer, I already had breast cancer". A lot of sharing for people who met 3 seconds ago. I remember unabashedly staring at these two having the conversation, attempting to one up each other on cancer.
It works the other way, too. Some people feel like there experiences are different and therefor less than what your experiences and have a hard time sharing. One of my really good friends just told me that she had been diagnosed with stage 0 cancer back in November and that she "only" needed surgery to rid her of the disease. She said she didn't want to tell me because first, she didn't want anyone to know and second, because she didn't feel like what she went through was on the same level as what I went through. She felt like she didn't have cancer when she compared it to everything I went through. We were having this conversation while out with friends and the other people at the table were appalled at this. Oh, you non-cancer havers, let's hope you never understand how this can sometimes make sense. I could only smile and tell her that I understood. I told her that if she did ever want to talk about it in detail that I was here. I told her that as much as she might not think it, there is so much shared experience from all stages of cancer that she need not feel bad that she didn't have to go through as much treatment as I did to get herself healthy. I let her know that I was happy she was sharing with me now and that I was very grateful that they found her cancer so early and that she was doing great.
Because the bottom line is whatever type of cancer you have, whatever treatment you need, the ultimate goal is what we all want: health. We are all in this together. All 14.5 million (in the USA) cancer survivors, we all have had some shared experience and we have all kicked cancer's ass. So let us try not to compare our experiences and decided who had it worse, let us continue to support each other, share our stories and all work towards finding a cure and cause for our diseases. Can I get an Amen? (Sorry preaching done, but sometimes we all need a pep talk).
Did you see this story from CBS news? They are finding 15 more genetic "hot spots" for breast cancer. This way they can identify people who are high risk. Very intriguing the things being developed in the frontier of genetics.
After my debacle with tooth decay from ginger chews I switched to an occasional piece of candied ginger. In attempt to curb my cookie addiction, I switched to keeping dried figs in my desk. They took the soy out of Grape Nuts and I always eat them hot with raisins. I thought these were all great changes to improve my health, but they, unfortunately are not helping my teeth. Today I had xrays and 45 minutes of necessary torture that is a dental cleaning.
Here is how the series of xrays went. Me sitting there with my mouth gaping open. The Dental Hygienist, who always comments about how awesome my sneakers are, moving around telling me to bite gently taking the series of photos.
Than came the pause. As a cancer survivor you know what a pause by any health care professional means.
DH: "Hmm. That doesn't look right."
Me: "rrr? (I still had a bite wing in my mouth"
DH: "Oh, sorry I hate when people do that. Let me take a couple more photos and then show you what I'm looking at"
Me: "Poop"
The DH shows me a shadowy thing on my front tooth and then asks if I had trauma. I'm pretty sure that I would remember hitting my front teeth. She also shows all of my starter cavities. Nothing that needs fixing immediately, but lots of things to keep an eye one. The Dentist comes in as I am having visions of me and a missing front tooth to do a cold test. They take something that makes your teeth super cold and you have to tell them when you feel it. So yes, it's super pleasant. I could feel it, so she decided that they would watch my teeth and that "It was just something that showed up on the xray." I will buy that for now.
However, because my teeth are so close and I've had cavities after chemo she let me know that dried fruit is on my do not eat list unless I can floss immediately. Sigh. I guess I'll switch to ginger tea? Hmmm, can I blame this on tamoxifen? No. No I cannot. But, I don't have to go back for another 6 months.
Friday was officially 2 years since I finished cancer treatment. 2 years. That was fast. And I've been having a lot of fun. As well documented I am not one to let a Survivorversary pass without celebration. And this being the biggest of them all absolutely I decided to throw myself a party entitled Better of NED 2.0. I have put in for February 27th off from here to eternity.
The warm up
I spent all day Thursday at work telling anyone who would listen why I was not going to be at work on Friday. I taught a lot of people the word survivorversay. And folks who didn't work at the hospital while I was bald asked some questions and I educated them of my cancer journey.
Pancakes and Prep
I woke up on the greatest of days, heretofore know as NED day with a sour stomach. I was not pleased because celebration involves a lot off food. However, after a call to my mother to make me feel better (yup 33 years old and this still works) I put Kelly Clarkson "Stronger" on repeat and started the day dancing.
From there my Mother took me out to breakfast. If you have a sour stomach while celebrating NED the easiest fix? Coconut Chocolate Chip Pancakes and a side of griddled mashed potatoes. True story. Fixed my stomach issues and ate nearly all of it.
She and I did a little bit of shopping to get the rest of materials for the party and then left me to my happy self to spend the day in the kitchen listening to 80's music and my new favorite Amazon Prime Playlist. Periodically I download new lists, but I didn't listen to it. Well, let me tell you I think the people of Amazon read this blog. This playlist has Kelly Clarkson "Stronger", Sarah Bareilles "Brave" , Beyonse "Girls (Run the World"), Destiny Child "I'm a Survivor", Macklemore's "Can't Hold Us" and Journey "Don't Stop Beleiving". So I maybe listened to the playlist 3 times while I danced around the kitchen.
Boob Cake
The centerpiece for my NED party was my right boob cake. I made a 3 layer chocolate cake frosted with salted peanut butter frosting and pretzels. It's a new recipe from Joy the Baker's cookbook Homemade Decadence. However, I decorated it slightly different then the directions. I mean I'm sure Joy is cool with pink ribbon sprinkles. I put a row of them on the cake to represent the scar that I have.
Family, Friends and Fun
People came to party later in the night. We ate food, shared a whole bunch of laughs and there was a lot celebrating. People loved the cake (both the idea and the taste of it). I made sure that one of the cookies made had ginger in it as a continue tribute to what got me through taste changes. Here are some photos of some of the love that was sent my way for the NED day.
My niece showing her super cute support.
I'm already looking forward to NED 3.0! Just have to clear those pesky scans in April.
Oh, and this gem was the Amazon Prime Playlist. It was stuck in my head while I tried to go to sleep at night and I believe after the size of the piece of cake I had that I could fly.
CBS News did a story on one of my new heroes. She is 36 years old, has been fighting Stage IV Breast Cancer since 2011 and has not yet lost her sense of humor. In fact, she took it one step further. She is doing stand up comedy about having cancer. Love it. In the piece their are some jokes where the audience is uncomfortable, but to this girl I thought they were all hilarious.
Nicole Osborne you have a new fan in Boston. I hope you do make those Christmas Cards that say "Still Here" for many, many more years.
The article and video can be found here so everyone else can be fans of hers too.
We are getting buried in snow here. Buried. 90+ inches since January 23rd. Public transportation often cancelled. Its been physically and psychologically taxing. We are inventing new words to describe the side effects of the snow: Snager, Snochosis, Snaddness. However, it has also left me with an additional feeling: gratitude. I am so thankful that the winter of 2013 was not like this. Having to go to radiation daily while wondering if your bus is going to show up? I feel for those who are in the midst of treatment right now. And I'm thankful to be where I am. Here are a couple of photos of my backyard this morning:
When waking up to the midst of a blizzard I did what everyone else does. I made a batch of whole grain blueberry muffins and read the latest breast cancer study from the New England Journal of Medicine. (Citation: Francis PA, Regan MM, Fleming GF, et al. Adjuvent Ovarian Suppression in Premenopausal Breast Cancer. N Engl J Med 2015;372:436-446). This is known as the SOFT trial; Suppression of Ovarian Function Trial.
The basics
The SOFT trial randomized 3066 premenopausal women to receive 5 years of tamoxifen, tamoxifen plus ovarian suppression or exemestane (an Aromatse inhibitor, decreases the circulating estrogen level) and ovarian suppression. This study also did something that most studies have not done, they stratified their results based on subjects having needed chemotherapy vs not. This is a very important detail because most often those who have had chemotherapy are survivors who had more aggressive cancers, cancers that had already spread to the lymph nodes. The study followed the 3,066 women for 5 years and the primary end point they were looking at was disease free survival.
These are my notes. "* You bet your ass it is". Very scientific. And yes my pen is pink
The Results
When the investigators did the large group analysis overall it was found that adding ovarian suppression to tamoxifen did not provide a significant benefit. Bummer, right? Well, the study found something that is worth further investigation. And its very important for what this study deemed the very young sub group. This is for women that were younger than 35 years. 233 such women were included in the primary analysis. And this is where the interesting part occurs. In this subgroup (my people!) the "rate of freedom from breast cancer at 5 years was 67.7%" on tamoxifen alone, 78.9% for those on tamoxifen plus ovarian suppression and 83.4% for those on exemestane plus ovarian suppression. Whoa. This clearly is underpowered, but does designated that further investigation into the true effects of ovarian suppression and its benefit should be studied in the "very young" sub group. The study authors write
With a median of 67 months of follow up the number of breast cancer recurrences observed was large enough to indicate that including ovarian suppression as a component of adjuvant therapy can meaningfully reduce recurrences in this cohort.
I know that one study does not make treatment plans, but this is exciting stuff. However, it may be a little premature in follow up as perhaps 5 years is too short a time. This study was pretty rigorous in design and removed the previous confounder that is present in many other breast cancer studies and that is the treatment with or without chemotherapy. Also, an important part of this study was the definition of all the patients as being premenopausal. The study defined premenopausal based on estradiol blood levels (estrogen in the blood) and not on the presence or absence of menses.
The Results based on the non-science portion of my brain
What! 1/3rd of those who are 35 years old or younger had a recurrence while on tamoxifen. That seems a bit high, right? That means about 15 women enrolled in the study had recurrence during the 5 year period. But, it says recurrence not death. So that is not great, but ok.
Also, not great to read was the overall survival of those who had had prior chemotherapy was lower than those who had not had prior chemotherapy (and was found to be statistically significant). I mean it makes sense because those offered chemotherapy usually have more aggressive disease. However, it is still hard to read. Especially, because again the very young subgroup 94% all had had chemotherapy.
Overall, like most studies more investigation is needed. But, very interesting implications for young survivors. For further recap of this study you can watch the video below produced by the Young Survival Coalition
As part of the PRESENT trial today was my 21 month (holy crap we're getting close to two years!) follow up. It involved 4 tubes of blood, some urine and a physical exam. Easy peasy.
I was nervous about my blood draw today, only because the last time I ate salty foods I had some trouble with the blood draws. No such issue today. The woman in the lab recognized me and said, "Well, we haven't seen you in a while.". "I know, isn't it great?" "It's awesome". Got to love mini celebrations with staff that you've seen for 2.5 years.
Today was just a check up and to follow up on updates to the consent forms for the studies. One update I knew was coming down the pipeline because as we know I am a proud owner of a side effect. It was interesting to read that there have been 5 severe reactions (this was the update). An allergic reaction, chest pain, back pain (2) and syncope. Oops. So it really was just me who did that. Well I shall wear the honor proudly. Also, they updated the consent form to say that at least 300 people have had at least one dose of the vaccine. Up from the 100 when I originally enrolled. Progress! Yay science!
A separate update to the consent form to send my tumor tissue out for more testing. More testing, of course. I like to send my blood across the country let's send some tissue too. I didn't know this test existed so, it was interesting for me to learn. They were sending the tissue to have the HercepTest done. I asked the research NP if the name implied that they are checking for the amount of the HER2 protein that helps decide if the patient should get Herceptin the chemotherapy? She told me yes, and they give it a score. The same way they oncotyped my tumor that helped make the decision that chemotherapy was in my best interest. Again, another example of how smart cancer treatment is becoming.
All the new paper work was signed. My side effects were reviewed with my Oncologist. We discussed the new ovarian cyst and occasional joint aches and muscle pain, but overall no complaints. Knock on wood I have not had any hot flashes. She did a physical exam where we chatted about the upcoming implementation of our new electronic medical record. Then she pulled out my labs. Not a single, solitary value out of limits. Everything WNL (within normal limits). She said "Your labs look better than mine!". Always, always a nice thing for a cancer survivor to hear.
There was however one side effect I didn't review with her. Fatigue. This is because I know the cause of it. The New England Patriots are Super Bowl Champs again and it was too darn hard to sleep after that great of a game. It's important to watch everyone of Brady's touchdowns again. It's important to see Bellichick smile (sorta) while he raises the trophy. Too much fun.
