Wednesday, August 19, 2015

Practicing Comfort In, Dump Out

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.

Image Source:

 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.

Sunday, August 9, 2015

Diagnosis Day 3.0

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.

Monday, August 3, 2015

I know its so vain, but.....

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.