People believe that it is some birth right that they be able to live until they are 90 years old with minimal complications. Folks often take for granted that the years fly by on the calendar and believe they are owed more birthdays. This is one of the greatest myths of life that everyone is instilled with unless they have seen or experienced otherwise.
We are not promised long, healthy lives.
We are not promised long lives. We are not promised healthy lives.
Sometimes inexplicably bad things happen to good people. Repeatedly. These folks understand that a long, healthy life is a myth. Today, was one of those days at work that reminded me that not everyone is aware that there is no promise of a long life. I will not repeat the horrific story here, but the death of this young patient has me shaken to the core. She didn't die of cancer, but the manner of death really isn't the issue. In a brief period of time she has passed on. There is an absolute finality and sadness of it reverberated through the hospital today. It has reminded us that as much as we want to believe the myth, we can't.
Today, I am officially 1.5 years cancer free. Today, I am reminded that life is meant to be lived. Every moment of every day because we are not promised long, healthy lives. Today, I am reminded to be grateful for being alive and having more time to fly by on the calendar. Today, I am thankful that those in my life are working towards their long healthy lives. Today, I am here and I am present.
One of the nurses at work finished her breast cancer treatment July 21st. Earlier in the week we ran through the protocols for the different clinical trials we are both on. She had post menopausal ER+/HER2- stage III cancer. We were discussing about how my trial requires MUGA scans and her's will just involve blood work and making sure she does not get too immunosupressed (not good for an ICU nurse who has direct patient care).
This morning however, was a classic interaction between two survivors.
Survivor #1: I drank too much alcohol last week. My oncologist told me I could have a couple of drinks a week.
Survivor #2: I haven't had an alcoholic beverage in 2 years.
#1: Ok, so you just completely abstain.
#2: Right, if I'm going to take the tamoxifen every day to lower my circulating estrogen level then I'm not going to do anything to raise it.
#1: Well, but does the tamoxifen lower it that you wouldn't be working against it to have the occasional drink?
#2: I don't know.
#1: What I'm really struggling with is what to do when we are out with people and they order another drink and I've had my one.
#2: I order dessert.
#1: Well, we both know that too much sugar isn't great...
Other nurse caught in the crossfire: You two have been through so much, you should just do whatever you want. You've worked so hard to get where you are.
#1 and #2 give other RN look. Both telepathically communicate "Right we've worked really hard to get to this cancer free place, and we want to stay here. So please excuse us while we compare the size and color of our crazy pants".
#1: Another survivor told me that I shouldn't eat anything that came from another mammary gland. Do you eat cheese and milk, etc? I try to limit it.
#2: I eat dairy like it's my job. I go through a gallon of milk a week. And I cannot give up yogurt.
#1. Organic, obviously.
#2. Obviously.
#1. I can't give up yogurt. I love it with berries and Grape Nuts.
#2. Oh, I was so excited when they reformulated to make them Soy free!
#1. I know! I need the crunch. Also, are you one of the natural deodorant people?
#2. I was, I read some more research and realized I didn't need to smell on a daily basis and went back to my full strength deodorant.
#1. Yes, it lasted 35 seconds until I was done with radiation then I switched back.
#2. How is running going now that treatment is completely done?
#1. I had the best run of my life last night and ran my 4 mile loop 2 minutes faster than I ever had. I am so excited.
#2. That is awesome.
The longest conversation I had with this nurse before either of us were cancer survivors was to ask why a patient's tube feeds were turned off. Previously, she scared the crap out of me. Today, we chatted like we had been friends for years. That is the amazing common denominator that is cancer. Everyone has a shared experience and even in survivorship you just want to make certain that people are having the same thought process. And guess what? We all are.
Today it has been 2 years since the nurse practitioner called and said "You have breast cancer". As I fully believe that I should celebrate all anniversaries big and small today was no different. This years celebration was similar to last years celebration, with one major detail. This year both my mother and I didn't even realize when 3:30 pm came around. Last year we both totally fixated on the time and date. This year I woke up to a Happy Anniversary from her and my Aunts. (Like last year we were at one of my favorite places on earth, Lake Sunnappee). But, not until I started typing this post did I realize that both of us just happily bopped along in the car and the time past with out recognition. This is what other cancer survivors have told me about time and how you really do think about having cancer less. This time last year I would have thought they were nuts. This year I was busy scanning the radio for a song to sing along/torture my mother with and the time passed. I noted about 5 days ago my cancer friend Stacey had posted this to her facebook page:
"Ya
know how I know I keep sticking it to cancer? Cause yesterday marked 3
years ago when I heard the words confirming I had cancer... And I forgot
about it yesterday . Better yet, last night 3 Doors Down sang my conquering cancer song "Let me be myself". Eff you cancer, eff you."
Just think August 8, 2015 I might even forget it is my diagnosis day. Likely not, because I do like all these celebrations.
Although I missed the time, the day was fully recognized. I celebrated with a run (and thankfully one that felt reallly, really good on my legs) and it was reasonably fast (7:30 mile pace). I had some breakfast and then was able to spend some time out on the lake by myself in a kayak. It was a gorgeous, peaceful morning. And it was a nice to be able to celebrate the day with a quite brain soaking in the sunshine.
It was a great day to spend with my family capped off by a great dinner with my parents and the ultimate celebration food......Chocolate Chip Bread Pudding. For real. Chocolate Chip Bread Pudding. My two favorite things together.
And to follow the tone that Stacey set at the beginning of the week here is a repeat of my conquering cancer song. I still love this song and sing it loudly and fist pump proudly to it.
Today was a standard built in follow up for the PRESENT trial. It involved blood, urine and physical exam.
Easy. Peasy. Lemon. Squeezy.
My veins have really fully recovered. 7 tubes of blood, one stick. No problem.
Chatted with the Nurse Practitioner, we discussed running. We talked about how terrible my legs felt in May and early June. She did tell me that many of my symptoms could be attributed to tamoxifen, so I am not crazy for blaming my creakiness and stiffness on them.
And then I didn't have to have anything injected into my legs and I was free to return to work.
There is large universal agreement that online dating sucks. Attempting online dating after cancer is not the self esteem booster that I thought it might have the potential for. It is a mindfield of trying not do the online awkward overshare. It also helps you vacillate between "I am a kick ass human being. I beat cancer" to "I am woman with 3/4 of a right boob and 3 blue freckles". Attempting online dating definitely ignited some body issues that everyone who has ever had cancer goes through. And sadly many of them still revolve around hair.
And it all starts with a profile.....
This may seem benign enough for most people. Cancer survivors are not most people (well with advances in science the 33% of us is slowly becoming 50% but I digress).
Step one pick a photo. Sh@t. Here is a recap of my inner monologue: Well I should really only pick pictures with short hair because I don't plan on growing my hair back. Ok, but my hair texture has only stabilized since November. And many of my short hair photos my hair is curly. Damn it. Ok I know, I know I'll just post this one:
Ha, just kidding. After more time than I care to admit, a whole lot of photocropping and trolling my own facebook page and after 14+ changes my current photo is this:
or this one, depends on the day
Ok, so profile photo is sorta in place. Wait, no, I changed my mind, lets post a new one! I may or may not have eaten a 1/3rd of a bag of chocolate chips during the first step. I am off to a good start.
Step two is to answer seemingly trivial questions about yourself. I might need something stronger than chocolate. Height, body type, eye color, education. Check, is their a box for athletic with 1.75 boobs? check, check. Do you drink alcohol? Hmmm. Based on my previous experience from awkward oversharing what do I write here? Occasionally? Yes, in 9 years I might occasionally have a beer. Never? Am I going to be flagged as someone who underwent a 12 step program to help their alcohol allergy? Should this really be this hard? I select never. Because it's true.
Do you want children? Well, isn't that a pandora's box of a question. Thank you for having an "I'll tell you later" option. Is there a maybe on the 5th date you get to know this business button? Good lord, this sucks. But, I plug along.
Step three is to write your biography. I write some nonsense about baking and running and my predilection for quoting songs and movies. What a really want to write in all caps is: BREAST CANCER SURVIVOR. SO YES, I AM AWESOME. AND PLEASE DON'T EVEN TRY TO TOUCH MY RIGHT BOOB. Perhaps too much honesty? Not to worry, I do not write any of that. I trudge along to step four.
I pay money for this thing to be posted on the interweb. Actual money. Money that could be spent on more chocolate chips. But, after many conversations with a good friend about how being a cancer survivor means you continually try to keep things off the "I wonder what would have happened if I did this" list and A LOT of encouragement I paid the money. And it got posted out into the world.
After my profile got posted, nothing happened. I got the occasional wink from a creeper. Dude, your 67! 67, how did you even get my profile! I send out a fair amount of e-mails to people I find interesting. And then I am thankful for perspective. Waiting to see if a boy is going to respond to an email you sent him? Cake walk, when you've waited two weeks to find out the genetics of your cancer and if you are going to need chemo. However, after 20+ emails sent out and a great online feature that let's you know that people have in fact viewed your profile and not responded I needed a break from the site. And some chocolate chips and good for the soul weekend trips with encouraging women. After these trips, I got back on this site. A nice man sent me an email and we went out on a couple of dates. And that was it.
And so I'll "just keep swimming" and putting the effort to make this a real try. Until my subscription runs out. And hope, that no future suitors google me and find this site. Well, until after the "I've had cancer" date.
One of the nurses who is currently finishing her treatment for breast cancer came back to work last week. We chatted about her peach fuzz, how she was feeling, compared radiation tattoos and then started chatting about nutrition. We discussed the lack of research on GMOs, avoiding soy protein isolate and she mentioned that she was on an aromatase inhibitor and not tamoxifen and that her doctor told her she couldn't eat flaxseed. I told her that I had heard nothing of it and that I would fact check it. Rundown:
Like all nutrition studies it is hard to tease out if the one thing that people are eating, in this case flaxseed, is truly what is effecting outcomes.
In short term studies 1 to 4 tbsp altered estrogen metabolism that may protect against breast cancer, and these effects are heightened in overweight and obese individuals and post menopausal woman
Could flaxseed interfere with tamoxifen? There are no human studies currently reporting. But, in mice studies where the mice were injected with ER+ breast cancer flaxseed meal maintained the effectiveness of tamoxifen.
Aromatase inhibitors have not been studied
Flaxseed may slow or decrease absorption of medications
Bottom line:
Flaxseed may be beneficial. I'll continue to add it to my granola and banana bread. And I'll tell the nurse that the studies are still out for her and flaxseed.
Source:
Collins, K. Flaxseed and Breast Cancer. American Institute for Cancer Research. March 2010.
I think that there are very distinct stages in survivorship. The first year is spent with the fear that the scans will not come back clean. This leads to crazy amounts of research and sometimes willing to believe a friend's facebook post about aluminum from deodorant being found in breast cancer tumors. This might then make you bananas about having to wear the natural deodorant that doesn't work so great when your a super sweaty girl. This means you are willing to take plausible interweb stories over actual science. Even if you are well trained in epidemiology and one of your favorite past times is dismantling studies to see if they really are worth the peer reviewed journal they are in. The first year out is spent searching for causes that might not every be found.
Funny thing happens when you switch over from counting survivorship in months and switch to years. Funny thing happens when you don't remember every 27th of a month that it officially puts you another month into survivorship. You start to move back over to the side of science. You start to analyze the source of information and you may need to start fact checking yourself. Luckily, there are also people who devote their full time work to this.
Thanks to this blog post from Dana Farber I switched back to an non natural antiperspirant/deodorant. One cannot have a wacky internal thermostat and not need some help from a little bit of aluminum. This post helps me feel better about using it. (They also have a great post about the 5 myths of Breast Cancer, further evidence against Soy Protein Isolate).
Because I switched back to mainstream deodorant does not mean I don't think something in my environment contributed to my developing breast cancer. I will absolutely continue to filter my water with a carbon filter, eat organic for the dirty dozen, and try to avoid flame retardant materials. A great fact sheet from a study done at the Silent Springs Institute for the Exposure Biomarkers for Suspected Breast Carcinogens confirms this (well the water and the flame retardant topic). But for now, I am going to enjoy that my brain has switched over from months and is now thinking in years. A fellow survivor did tell me that at some point you wouldn't think about having had cancer multiple times in a day and that gradually their will be days you don't even think about it. I'm not there, nor do I think I'll every have those days, but for now I am enjoying the fact that my thoughts about having cancer are much, much less frequent.
