Tuesday, September 22, 2015

The one with another list of things to note

As I sit here recovering from my double mastectomy and reconstruction (I'll write about surgery later. I'm not ready yet) -- I've had some more time to sit and stew and reflect on a few more things. I know I've already put up a post where I talk about stuff I have learned, but this is just a little different.

I've thought about the things that everyone who finds out I have (correction: HAD) cancer asks: HOW CAN I HELP? WHAT CAN I DO? The answer is incredibly simple. Just be there. Be my friend. Be present. Be happy. Share with me the funny details and stressful situations in your life. Tell me about your day at work, vent to me about your crazy co-workers, all of those small little things add up to be just what I need - - your friendship. Now, this answer doesn't always go over very well with folks. Obviously I cannot, and will not, speak for everyone battling cancer. I am my own person and only know how this diagnosis has played out in my life. Just to be clear. So, with that in mind, I have made up a list of things that have helped me so far. Things that have encouraged me to keep a positive attitude, made me laugh, helped my family, and reminded me that I have done a fantastic job of surrounding myself with awesome people.

1. The "Chemo Advent" box.
A good friend of mine made this box and placed in it 20 different and individually wrapped up gifts. There was one for each week of chemotherapy. I opened up a new gift on each chemo day and it was such a lovely and happy thing on those craptacular days. There were things like chapstick, small candle holders, a nail file, stickers, googly eyes, and earrings. Such a great idea and most definitely brought me joy and chuckles.

This was the very last thing I opened. It's fantastic and currently resides on my bookshelf. 

2. GoFundMe campaign.
My youngest sister-in-law started a small GoFundMe for my family. I have good insurance and we have a comfortable savings so we aren't at risk of losing our house or anything. But the extra funds were definitely appreciated and seriously helpful. We used the money to pay for our portion of the cost of surgery to put in my port. (Thanks for my Sigourney Weaver port, guys!!) I don't think this is something that must be done for everyone, nor do I think everyone wants a GoFundMe for their stuff. Probably best to ask the person to see how they feel about it before you create one.

3. Cards and notes through good old fashioned mail.
Honestly, I love getting things in the mail that aren't bills. It makes my whole day. Even when folks live hours or states away, it is so lovely to get a short note from them. It's the equivalent of a long distance hug. (Plus, I like being able to send things to them in return.)

Look at how happy this card is! And stickers, too!

4. Social Media (#hatsforjenn or #hatsforjen - Google it. It was a thing.)
Honestly, social media has been kind of a lifesaver for me. It's been a way for me to stay connected to friends and family, especially on days/weeks when I didn't feel so hot and didn't want to leave my house. I found that folks would leave me encouraging notes, funny pictures, and send IM's checking in. It's not like a phone call where you feel obligated to answer or then feel like an ass because you ignored the call -- social media has been good to me. Personally, I use Facebook, Google Plus, and Pinterest. All for different crowds and purposes. There was a group of seriously wonderful folks on Google Plus who ended up starting a thing where folks would post pictures of themselves wearing all kinds of hats and used the hashtag #hatsforjenn (or #hatsforjen) to make me laugh and smile when I lost my hair. Words can't describe how cool that was.

I had my own hashtag!!

5. Staying away from WebMD.
This may not work for everyone, but I never ever ever went to WebMD or Googled anything pertaining to my diagnosis or side effects. If I had questions or concerns I simply called or emailed my doctor or nurses. I mean, I already knew I had cancer so I probably shouldn't have been scared about anything that might have come up through random internet searching - - but why risk freaking myself out, ya know?

6. Frozen meals, dinners, and gift cards.
To the folks who brought dinner, made ready-to-go frozen meals, and brought gift cards for food - - thank you x 1,000,000. These were perfect for the nights we just ran out of time and energy. When Ben would miss work to shuttle me to and from doc appointments, he had to make the most of his time while he was at the office. But when you figure me and my too pooped and feeling gross self into the equation, there were days I couldn't pull my own weight to make dinner, so he had to be home because someone had to feed the kid! These dinners saved us so much time, energy, and stress. It was one less ball to drop and allowed us to all be together as a family in one room, even it was just for 30 minutes while we ate. My aunt used this website called "Meal Train". I highly recommend it. You can set up a calendar for a family and it gives you a personalized URL. You can list things the family likes/dislikes or any allergies, and then you share the link. Friends and family are able to select the day and menu that works best for them so there are no double-ups or conflicts. Pretty snazzy.

7. Relay for Life luminaries.
I did not attend the local 2015 Relay for Life event. I was at the tail end of chemo and honestly, I didn't know for sure if I had beaten the cancer and didn't feel comfortable participating until I could call myself a survivor. Right or wrong, that is how I felt. But, a few folks purchased luminaries for me and it just about made me cry. What a wonderful reminder that I wasn't alone in this fight and that people were rooting for me. Oh, and the donation to the American Cancer Society is nothing to sneeze at either. It's not all about funding research- - it's also about funding local programs for folks dealing with cancer. Things like classes on how to style your wig and draw on eyebrows, things like paying for taxi services for folks to get to and from chemo. It's important stuff they are doing. (You can bet your ass I'll be participating in the 2016 Relay and I'll proudly wear my "SURVIVOR" shirt.)

It still makes me feel all the feels...Ugh...who is cutting onions in here? No one? Maybe it's dust. Yeah, dust. 

8. Journaling, blogging, and writing poems.
I know this one seems kinda like a gimme, but still. Taking the time to seriously process how I felt about the different stages of treatment helped to keep me on an even keel. By taking the time to put into words how things worked and the corresponding emotions was good for me and I hope by sharing some of what I wrote, it helped others gain a better understanding of what living with cancer can be like.

9. Reading.
Duh. Reading for me is the best way to get out of my own brainspace for a while. I don't know about you, but I definitely need some time to recharge and books are it for me. Honestly, I probably would have driven myself and my family crazy without my Nook.

10. Hanging out with friends.
Yeah, this is another obvious one, but it is still on the list of things that helped. Even when I lost my hair and felt a smidgen uncomfortable with my new look - it was great being around my friends. To hear about what they had going on, their successes, their struggles, and their jokes. Again, it was another way to remind myself that life was, and is, still going on. The world did not stop turning because I got The Cancer. People still need me, and I still need them.

11. Working.
Let me start by saying that I might have the best workplace in the history of work. My supervisor and colleagues have been so completely understanding and supportive. Through the grace of a good sick leave policy and technology, I was able to continue working through all 20 weeks of chemo and after. I have not had one unpaid day of leave and on days when I couldn't get to the office due to appointments, nausea, or compromised immune system - I was able to work from home. Continuing to work was yet another thing that helped remind me that the world is still spinning and things still need to get done and that I was/am bigger than a diagnosis.

12. Music. Singing, dancing, and learning to play my uke.
Okay, yes, this is yet another obvious one. But, I don't care. It stays on the list. For me, music is a kind of medicine - it could be meaningful lyrics, it could be a catchy clap-track, it could be a gnarly bass line - there is always something about music that leaves me feeling satisfied. Sometimes I like to dance to it, sometimes I like to sing along with it, and sometimes I like to figure out how to make my own. Music helped/helps.

I am sure there are other things that helped - small tokens of friendship and words of encouragement - but some of those things I just want to keep to myself because they are precious (hopefully you've received a personal thank you from me by now). These are the big ones. The constants. The things that I kept coming back to in order to keep going. To keep being Jenn the mom, wife, daughter, sister, friend, and all of the working, cleaning, talking, driving, shopping, dancing, cooking, and laughing that goes along with it.

I said it before and I will say it again - I am just me and I can't (won't) speak for everyone dealing with cancer. So, god forbid that you should ever know anyone else who has to go through the different stages of a cancer diagnosis, now you know some things that help. You helped. And you, and you, and yes you over there. You all helped. Thank you.