After posting about practicing comfort in and dump out one of my colleagues sent me this great animation of Brene Brown, PhD explaining the difference between sympathy and empathy. My favorite part is where she explains how awful it is to say to someone "At least..." It is so natural for people to try to find the silver lining, but it is usually not helpful.
One of the concepts that get in the way of being an empathetic person is looking for someone or something to blame. Often people become so wrapped up in finding what to blame for people's problems that they can't empathize. Brene Brown totally nails it in the following video:
Who hasn't done it? Fascinating to look at it.
But, I'm not gonna lie I am still going to blame tamoxifen for a whole host of things. Maybe, I'll work on this a little bit more.
The LA Times Op Ed from April, 2013 titled "How not to say the wrong thing" really is one of the greatest things ever written. It helps set boundaries for people and because people often don't know what to do in a crisis it gives you an outline of what is acceptable and unacceptable to say.
The person in crisis is the center of the circle and they can complain or say anything to any of the rings. Whichever ring you find yourself in you provide comfort in and you can only complain to the rings outside of your own.
Sometimes I feel like this should be posted around the hospital. I am amazed by the things that people say to other family members. I still remember some of the inappropriate things people said to me through out treatment. People have the right to feel their feelings, but they forget the key piece that you don't have the right to share you feelings with whomever you like.
Having transitioned out of being the person in the center, helps make you better at this and a little aware that not everyone has read this article or is actively practicing "Comfort In, Dump Out". When in doubt, just listen.
And when you need to send a card send one by Emily McDowell.
Well, last year I claimed that I might even forget when my three years past my diagnosis day was coming around. I never believed that I wouldn't remember. But, a funny thing happens the further you get into survivorship, you sometimes aren't anticipating the approach of the milestone date anymore. The phone call from the Nurse Practitioner and telling my family members that I had cancer, these are events that are forever ingrained in my brain. The date and time 8/8/12 at 3:30 pm are forever ingrained. But, this year it totally snuck up on me. And I think that's pretty awesome.
Earlier in the week, my mom asked me if I wanted to do something for diagnosis day. And honest to goodness, I had totally forgotten and already made plans. We weren't able to go to the lake this year, as we had already visited to see my cousin get married earlier in the summer. And I had plum forgot that Saturday was Diagnosis Day 3.0. We started to briefly reminisce about the phone call from the NP, but decided to just focus on the joy of celebrating more survivorversaries.
My plans fell through for yesterday, because life happens. But, my bf and I went to a wholesale kitchen supply store and I was like a kid in a candy store. I figured if I wasn't going to be spending the day baking to celebrate, why not purchase materials in order to further my baking endeavors?
Items purchased: new cutting board, 24 count mini muffin pan (really excited about it), ice cream sundae glasses with sturdy long spoons, reusable pastry bags, ladel, 2 pyrex storage containers (as nothing is allowed to be stored in plastic), 2 off set spatulas (why didn't I buy these sooner with all the cakes I've frosted), a new wire whisk (my old one is a little bit rusted and deformed), mini popsicle molds (because I can't control my internal thermastat) and silicon "shot" glass formers in order to make mini desserts. I'm excited to try it all. I may have gone overboard, but I'm ok with it. I was celebrating and it was all well under $100 and I do love a good bargain.
And, even though it is not pretty these days, I got my run in. It was slow, but it was beautiful weather and I enjoyed every single step over the 4 miles. What also helped make the day more enjoyable is that this week, my body decided it wanted to sleep again. While I still wake up at least once in the middle of the night (I think that is my new normal for sleep) I have been waking less and sleeping at least a cumulative 8 hours a night for the past week. I didn't start on the melatonin or anything else that I briefly discussed with my oncology NP, my body just decided it wanted to sleep again. I will take it and hope that stays for awhile.
You know what I did not forget, my cancer rally song. Fist pumping time.
I'm still not sleeping great. Some nights are better than others, averaging 5.5 to 6.5 hours a night, usually not continuous, but a cumulative average. Last night was pretty good. I slept for about 5.5 hours and then after being awake for a half hour slept for another 2.5. I'm feeling pretty good today. However, with the sleep disturbances comes another pitfall;
Crazy Pants with suspenders that are very hard to take off.
Sometimes when your not sleeping well, you think bizarre things and need others to double check you. And sometimes you have a hard time moving on from things. And sometimes issues that you thought you had moved on from after 2.5 years come back to roar their ugly head.
What has this issue been for me? My hair.
Now, I kept my hair in the pixie for the past two years and then decided that I needed to feel like I had hair again and have grown parts of it out to my ears. The front however, doesn't reach behind my ears. and I have a nervous habit of putting my hair behind my ears and have missed being able to do it with my super short hair. It's nearly there.
Towards the end of last week I was discussing my hair with a fellow breast cancer survivor, and sister of the traveling bear. She was commenting on how she liked my hair a little longer and was then lamenting about the front of hers still 1.5 years later hasn't grown in. I assured her that she might be the only person who can notice it. We were discussing how during this little heat wave we are having she slicked her hair back into a ponytail of about 2 cm. She said her kids hated it, but she was happy to be able to do it. She suffers from the same level of heat intolerance that I do. We also touched base about the studies we are enrolled in. Her and I discussed the results of the SOFT trial and I gave her a copy of the study. She and her oncologist have decided to do ovarian suppression. She hasn't yet been given the drugs, but has told me she'll keep me posted on how it goes. We both circled back to reassure each other that our hair looked good after the science talk.
This weekend I was honored as one of my running buddies had asked me to be a bridesmaid in her wedding. She had asked if, even though I don't have much of it, I wanted to get my hair done. I responded, absolutely, as getting ready for a wedding with the bride is some of the most fun. I figured having someone else do my hair with 90 degree weather would be a win-win, not a gateway to a meltdown.
The hairdresser was lovely. She gave volume to my flat hair. Then she styled it in a way that I couldn't tuck my hair behind my ears. And it looked ok {in the interest of full disclosure it has taken me 48 hours to be able to say that}.
I sent a text to my mom with a photo of me all dressed up. And the note: My hair is horrible. She assured me I looked nice.
I met my boyfriend before the wedding to say hello. I told him my hair was awful. He told me it looked fine. I may have called him a liar.
I didn't touch my hair before the wedding. I did my bridesmaid duty, kept the bride fed, danced my face off. But, when I got in the car to go home I started the to complain about my hair. I commented about how I was worried I had ruined all the pictures with my hair (conceited much?). I woke up the next day and anyone who asked for pictures of the wedding, I told them the truth. I only took one photo because I didn't like my hair.
2.5 years after spending a winter bald I still get vain about the way my hair looks. I am grateful to have all the follicles I do but, as far as I thought I had come, my self confidence about the way I look is a little more fragile than it was before cancer.I get frustrated with myself that its still an issue for me. And as my fellow survivor friend still sees a bald spot that isn't really there, I know I'm not alone. But, we'll keep working on it. And I think a night of unbroken sleep might help too.
Monday was my 27th month appointment for the PRESENT trial. This was an easy one. All they asked for was 6 tubes of blood and some urine.
In these five tubes they checked my cholesterol, triglycerides and normal basic metabolic profile. My labs came back normal and my triglycerides had improved. I found that surprising because I hadn't fasted for the test and ate mostly ice cream the day before (It was 90+ and humid, I don't cope well). So that is all good.
However, I am tired. Really tired. And I know that part of it from scheduling myself down to the second for the past 6 weeks. But, there is another large part of it.
My hormones are likely going awry.
According to the HOW study (Health of Woman) #2 Problems with Sleeping occurs in 49% of all breast cancer survivors. This is a far increase from 34% of all woman who overall list sleeping problems. Here is what happens for me. I have no problem falling asleep, but I cannot stay asleep. Last night for example I fell asleep at 8:45 pm. I then woke up at 10:15 pm. Then slept until 3:15 am. Then woke up every 10-15 minutes until my alarm went off and I went for a run. Or sometimes I will sleep until 2 or 3 in the morning and be awake for a couple of hours.
My room needs to be cool in order to sleep. I have to be able to have at least a sheet on or I will not be going to sleep. I use my sleep timer on the television like it's my job. It's quite handy to not have the tv wake me back up and I keep running. I try to run at least 4x a week, but lately its been more like 3 times a week.
And I've been reading up on some tips for menopausal symptoms. I found this article from Dr. Susan Love Research foundation that confirmed I need to keep my AC cranking.
On Monday, I dragged my ass into my appointment. The research RN asked me how I was feeling. I told her tired. She asked me about hot flashes and I told her thankfully still none. She asked me about when my thyroid was last checked. I told her April and it was normal. Then my Oncology NP came in. Her and I are quite friendly and she asked me how tired I was. She said that she noticed that I have been a lot more tired lately. She knows that I am frustrated with how slow I've been running (she and I had a brief chat after the Lahey 5K) and she asked me how I was sleeping.
Me: "Not well"
NP: "Trouble falling asleep?"
Me: "No, staying asleep"
NP: "Should we start melatonin or anything else?"
Me: "I don't want to."
NP: "Ok, but I'm going to be checking in on you"
And then she added the thyroid onto my labs. And called me an hour later to let me know it was normal.
For now, I'll make liberal use of my AC and TV. And hopefully catch a nap or two,or three.
Sometimes in the Summer I like to do nothing, and sometimes I like to have myself so scheduled that I have no plans only one night of the week. I've been doing the latter and having a blast. However, this has put me way far behind on my breast cancer reading. Even though I'm long out of school, I still feel like I have required summer reading. Thanks to the Dr. Susan Love Research Foundation facebook page they've been keeping me updated on all the goings on in the breast cancer world. It also has demonstrated how far behind I'm getting in my reading.
Let's catch up a little.
Age of menarche may effect if breast cancer is ER positive or negative
African-American woman have a higher rate of ER negative breast cancer. This study looked at the probability of younger age of menarche and an increased rate of ER negative breast cancer. It found that it is probable that earlier age of menarche (as seen more in African American woman) can lead a woman to have ER negative breast cancer. I think this study is fascinating because it shows that the path to developing breast cancer might start when your younger. You can read the article recapping the study here.
How do we identify chemicals that can lead to breast cancer
This study looked at what methods are used to identify synthetic chemicals that could potentially lead to breast cancer. The researchers identified that a chemicals ability to damage genetic information as well as its ability to be an endocrine disruptor, were both categories that a chemical needed to be tested for. The researchers found that there were not many tests in order to identify the chemical's genotoxicity or endocrine disruptor function. The study also found that for existing methods there was not great data to back up those tests. This study concluded that better methods/tests are needed and identified places where the gaps were needed. Methods in which testing is done is important because we cannot identify causes of breast cancer if we cannot do consistent, well defined tests. A review of the study can be found here. Being able to identify genotoxic and endocrine disruptors likely has implications beyond breast cancer is well.
Just in case you needed yet another reason not to smoke...
For premenopausal woman, smoking increased your risk from dying from dying from breast cancer by a 3.4. And it was even more significant for ER/PR + cancer (like mine). Just another reason not to light up, among the hundred of thousands.
More reasons to just keep moving
Women who sit for work and also in their spare time, have hobbies that are sedentary, are 2.4 times more likely to develop breast cancer. This study followed woman over 25 years. I couldn't find the actual article but a summary can be found here. Which for me, this raises more questions about the causation of my own breast cancer, because I am hardly sedentary and a life long non-smoker. But, it is good motivation to just keep running.
Sleep quality effects long term survival in breast cancer patients
If you don't snore and sleep more than 6 hours a night your going to do better in the long run than those who snore and sleep less. Breast cancer survivors report sleep disturbances as one of the top items that effect their quality of life. It's recommended that if people are having sleep issues that they be investigated by specialists to identify the causes. Lately, I've been able to identify why my sleep has been lacking. It's called fun. But, truth be told even with all the fun the least amount I sleep at night is 6 hours. I usually aim for at least 8 and have been known to go to bed before 8 pm when I'm very tired.
Well at least that answers the pertinent question the Barenaked Ladies raised; it turns out cancer survivors need sleep.
Yesterday wrapped up one of the craziest weeks I had scheduled for the summer. It involved attending the New Kids on the Block concert with my best friends from the 3rd/6th grade, a surprise baby shower, hosting a wedding shower for my running buddy and the culmination of months of fundraising and bake sale-ing at the Lahey Health 5K.
This is always one of my favorite events every year. It raises money for the Lahey Health Cancer Center's and as a survivor out of the Lahey Cancer Center it's always an important date on the schedule. I've been running the race since 2012. Actually, I won the race in 2012, having just noticed that my sports bras were starting to fit funny. 2 months later I learned how much I would need the Lahey Cancer Center.
After I was officially declared NED in 2013 my colleagues and I decided that would be our team name for the Lahey Health 5K. Every year our major fundraiser is a bake sale at the hospital. Dietitian's love to bake, and as a department we really go all out. Here is our table from this year:
The philanthropy office gave us a banner to make our table more "legit". Well, to say people were generous or that our baked goods were delicious would be an understatement. We raised $1,302 from the bake sale. That's a lot of dough (terrible pun, I'm not sorry). However, my favorite donation of the day came from a gentleman with a cane who handed me all the cash he had in his pocket, $4. He apologized for such a small donation, but felt compelled to hand over his cash as his mother had passed away from ovarian cancer at the age of 49 and he knew how important the cancer center was. I smiled at him and shared with him that I was a survivor out of the center. He looked at me and burst into tears and thanked me for sharing that with him. I smiled, myself in tears at this point, and thanked him for his donation. I honestly didn't care if we raised any more money after that. There were many other folks who came to the table and didn't buy anything, but just gave donations. Many of them come, who I don't know their names, but recognize their faces, and they know I was once the bald dietitian, ask me how I'm doing and give a donation. How can you have a bad day with baked goods and generosity on display? So very grateful for all who stopped by the table that day.
Team NED is a compilation of people. Some of my colleagues and some of my friends. We decided to get T-shirts made this year. Grey and pink (I can't help myself) with Team NED down the front and No Evidence of Disease on the back. I ordered them through CustomInk.com and really can't say enough about their customer service. They noted that our t-shirts were for a charity event and even made a donation. It was really fun to match everyone who was running and walking this year. Saturday morning we laced up our sneakers and headed out to Burlington High School for the race at 8 am.
Well, actually, my day started much earlier than that, at 4:30 am to be exact. See I was hosting a bridal shower in the afternoon and there were cupcakes that needed frosting and crostini that needed toasting. My first round of buttercream failed, but the second batch came together nicely. I had a couple of handfulls of cereal and a fairly good amount of buttercream frosting when I got picked up to go race. In fact, I smelled like buttercream and still had some on my face when my running buddy (and bride for the shower later in the day) picked me up. When her and I headed to the line I looked at her and said, "Something pretty terrible in my GI system is about to happen". She smiled and headed to the front of the pack as she was going for the win. I hung back for the second wave of people as my legs have been heavy, filled with lactic acid and have hurt constantly while running consistently for the last 6 weeks.. And its been getting worse. I haven't been able to run faster than 9 min miles during my training runs. I thought by hanging back I would go out at a more reasonable pace. Boy was I wrong.
When the second wave was let go, I took off. My running competitiveness got the best of me and although my legs were burning just standing on the line my first mile was 7:40 minutes. Now, in years passed I would have been mad about how slow that was. This year I was mad that I went out so fast. I had just passed my oncologist out on the road, who said to me "I've been waiting for you to go past!". I told the other dietitian who was running with me to go on ahead. Once he was out of view, I vomited a small amount of buttercream and kept running. I then passed through the second mile at 7:51 minutes. There was a lot more trouble to come. I vomited some more buttercream, I walked the giant hill and then I sprinted into the finish. It is officially the slowest 5K I have ever run by 3 minutes. My legs hurt so much the entire time and I am frustrated that I am running slower now than when I was just 3.5 months of treatment. But, Team NED did produce the Lahey 5K Champion and it was great day to see everyone out there. And....I was able to pick up my third survivor shirt. They were pink this year!
We wanted people to read it says survivor
Go Team NED!
After drinking some water and taking some team photos, I put my survivor shirt on. It's fun to give fellow survivors the nod and the woman volunteering in the snack tent had her pink shirt on and a layer of peach fuzz for hair. She asked if I wanted to pat her head, which I did. She looked at me and said "Look how straight your hair is now!" I laughed and we chatted about her upcoming Chemo perm and how my hair is slightly darker now than it was, but 2 years later the texture is exactly how it was prior to chemo. This made her smile and we went our separate ways.
Overall, team NED raised over $2,000 for the Lahey Health Cancer Centers, produced a race champion, and taught me what I already knew; buttercream frosting is a terrible pre-race meal. Overall, and this might just be the concert I went to earlier in the week talking, but I'd say Team NED has the right stuff. Thank you for all who donated, cheered and purchase baked goods. I'm grateful for you all!
