28 December 2018

2018 in Review

1. What did you do in 2018 that you’d never done before?
A lot of new medical tests. Oh I saw a show on Broadway!

2. Did you keep your new year’s resolutions, and will you make more for next year?
This is my answer to this quiz when I last did it in 2016, and I am copying it verbatim: "Not really, and I don't think so. I've been pretty meh on resolutions the past couple years. I resolve to stay alive."

 3. Did anyone close to you give birth?
Molly and Julia!

4. Did anyone close to you die?
I am getting confused because I skipped my yearly quiz in 2017. I was going to tell you that my grandfather died, but that was LAST year. Anyway, no.

5. What countries did you visit?
Here is what I wrote in 2015 and 2016 and maybe 2014 IDK:
None. The last time I left the country was when I visited my brother Duncan in Chile in 2005. I got my passport renewed the year a dear high school friend got married in Mexico (2008? 2009 maybe?) because I really WANTED to go to her wedding, but I was just too poor. I hope I need it at least once before it expires.
However adding: I plan to leave the country in 2019. I think.

6. What would you like to have in 2019 that you lacked in 2018?
I dunno. Nothing. Everything. I'm in a weird headspace.

7. What dates from 2016 will remain etched upon your memory, and why?
2/10/18 - James's wedding
3/7/18 - Arlo hospitalized (pneumonia)
3/14/18 -First cancer surgery day
8/2/18 - Second cancer surgery day
9/26/18 - CT Scan day (also my mom's birthday, heyo)
11/9/18 - First UCSF cancer treatment day

8. What was your biggest achievement of the year?
I got TWO promotions, which is pretty badass when you consider that I have three children and two of them are babies, and I have stage 4 cancer, and basically just a fucking lot going on outside of work. I'm a director!

9. What was your biggest failure?
I have spent my entire adult life irrationally convinced that I was going to die of melanoma, which is why I was so good about preventive screenings and dermatology visits, and I mean, I KNOW that this is not logical, but I feel like manifested my own disease somehow. The combination of a little bit psychic and a little bit anxious is the worst.

10. Did you suffer illness or injury?
Fuck yes. So much.

11. What was the best thing you bought?
I bought like nine pairs of Rothy's shoes and I love them so much I have no regrets.

12. Whose behavior merited celebration?
Most of my friends have been very lovely and supportive.

13. Whose behavior made you appalled and depressed?
My forever answer is Gabriel's dad (the worst!). I've also had some friends who are just...not very good friends, it turns out. 

14. Where did most of your money go?
I've been trying like hell to shop my way out of being sad. Spent a lot of money on Christmas. Also medical bills, debt.

15. What did you get really, really, really excited about?
My brother's wedding was super fun (I love weddings!). My friend Molly visited me and even though the reason was shitty, the weekend was great. I got to meet her baby!

16. What song will always remind you of 2018?
This Is America but I'm only listing that one as my answer because I took Gabriel to his first concert (!) and it was Childish Gambino and it was great.

17. Compared to this time last year, are you:
a) happier or sadder? Mostly sadder. With a side of BRIMMING WITH HAPPINESS AND A HEART TOO FULL re: my family.
b) thinner or fatter? Thinner! I had to wean the baby to start treatment, and also food tastes like sawdust now.
c) richer or poorer? I actually think richer. My expenses have increased quite a bit but so has my income.

18. What do you wish you’d done more of?
Sniffing the backs of my sons' heads. Maybe gazing at them while they slept.

19. What do you wish you’d done less of?
I wish I'd done a better job of ignoring work drama.

20. How did you spend Christmas?
The weekend before we went to Tahoe. The babies saw snow for the first time! Gabriel went snowboarding at Heavenly (best view in Tahoe, no question). My lovely friend let us use her cabin, and it was all done up for Christmas and there were Christmas movies and books and chunky toddler puzzles and hot chocolate and it was very lovely. We drove back on the 23rd. Christmas Eve we went to my grandma's which is our usual. Christmas day we kicked around our house in the morning (kids were delightful with their new crap), visited my MIL in the middle of the day, had dinner at my parents' house. Overall I think it was very nice.

21. Did you fall in love in 2018?

22. What was your favorite TV program?
IDK. Pass.

23. Do you hate anyone now that you didn’t hate this time last year?

24. What was the best book you read?
Spinning Silver.

25. What was your greatest musical discovery?
Vince Staples opened for Childish Gambino and I was pleasantly surprised!

26. What did you want and get?
Raise, promotion, the elliptical has been removed from my home.

27. What did you want and not get?
The elliptical is under a tarp on my deck.

28. What was your favorite film of this year?
As usual I see very, VERY few movies. I saw Black Panther and it was awesome! Oh I also saw Bohemian Rhapsody which was also awesome! On a flight I watched Crazy Rich Asians and The Spy Who Dumped Me and they were both thoroughly entertaining.

29. What did you do on your birthday, and how old were you?
I think I worked. Oh I did work. My mom took me out to lunch. I turned 36.

30. What is one thing would have made your year immeasurably more satisfying?
Less cancer.

31. How would you describe your personal fashion concept in 2016?
More Cozy Sweaters.

32. What kept you sane?
My babies.

33. Which celebrity/public figure did you fancy the most?
I love how British this questions sounds. Michael B. Jordan is super hot.

34. What political issue stirred you the most?
fucking donald trump and the complete fucking dumpster fire that is our national political stage

35. Who did you miss?
My brother James moved to MO and I miss him!

36. Who was the best new person you met?
Baby George!

37. Tell us a valuable life lesson you learned in 2018.
Sometimes you do everything right and it still all goes wrong.

38. Quote a song lyric that sums up your year.

Make sure my sister knows I loved her
Make sure my mother knows the same
Always remember, there was nothing worth sharing
Like the love that let us share our name

01 November 2018

Planning Phase, Halloween

I went to the Big City Big Hospital Real Doctor this week.
It was really good.
It was an actual melanoma expert who was knowledgeable and had a well reasoned treatment plan. I'm enrolling in a clinical trial which is a combination of FDA approved immunotherapy and some additional therapies layered in which make immunotherapy more effective in mice and therefore also hopefully in people. The doctor reasons (and I agree) that given my age I should go for the most intensive treatment available. I'm only 36, so I'm not trying to live for 1 or 2 more years, I'm trying to live for like....40. Maybe. Dare I hope?
He recommends immunotherapy over BRAF/MEK inhibitors because those tend to only be effective for a limited amount of time, which isn't a big deal if you are 80, but is sort of a problem if you're in your 30s and an extra year isn't really that much extra time all things considered.
He could answer all of my questions, including, how does cancer go from stage zero to stage four? Answer: it does not.
My local oncologist hypothesized that "melanoma is really sneaky, and we don't understand it well."
This doctor offered the more logical explanation that the spot on my back was a secondary melanoma site, and the primary site was unknown, either because it is internal, or because it regressed.
Basically, this:
Did you know that you can have INTERNAL MELANOMA?
I did not.
Anyway, I start treatment next week.
Probably I will feel like garbage.
Before immunotherapy, something absurd like 98% of metastic melanoma patients were dead people within a couple years.
Now it's more like 75%.
Which are much better odds, really.
But still terrible.
I had to work yesterday, because it's close week and I have that sort of job.
The kids dressed up though. Gabriel wore a giant inflatable T-Rex costume which coordinates nicely with the baby dinosaurs.

The children remain adorable.

29 October 2018

I need an accelerated life list

I need to redo this list for a shorter timeline.
  • Travel somewhere with my husband (Paris? Greece? Portugal? Iceland? Argentina? Somewhere). 
  • Take the babies to the snow (planned for December).
  • Take a trip with Gabriel (planned for December).
  • Travel with Molly (planned).
  • Get rid of the god damned elliptical machine.
  • Live long enough to see someone besides Donald Fucking Trump as our president.
  • Go to Santa Barbara with my mom again.
  • Pay off all of my debt.
  • Get my jewelry sized and repaired.
  • Try oil slick hair
  • Swedish Death Cleaning.
  • IDK if I will be allowed to get tattoos but if I am, finish the one on my leg and also get a bee and also get my family crest. 
  • Read all the books on my bedside table. 
  • And all of the ones in my kindle too.
  • And a whole lot more besides that.
  • Go to therapy (find a therapist).
  • Estate planning (made the appointment!).
It turns out I don't care whether or not I learn calligraphy or how to surf or how to make pie crust. When I think about learning a new skill, it makes me feel cranky. So I'm not going to do that.
I'm sad about not going to Russia, but I can't think of anyone who would go with me, and I feel a bit dodgy about Russia lately to be perfectly honest.
Hopefully I will knock all of these out and have years and years and years to come up with new ones. Maybe I'll go to Russia at some point in the future if I don't die. 

26 October 2018

Some things are harder when they are in writing

I have very lukewarm feelings about the oncologist I was referred to locally.
(I am going to the big city fancy specialists next week)
I feel like...well. I feel like I am maybe the second person she has ever treated with melanoma. Maybe she is great with breast cancer or colon cancer or something but she doesn't seem to know how to answer any of the questions that I have.
One thing I realized after my most recent appointment with her is that she has never SAID THE WORDS TO ME about what my diagnosis or prognosis or whatever is. She talked to my brother (I gave her permission to talk to my brother) and she INFERRED a lot of things but at no point has she SAID "you have x and your prognosis is y". So I messaged her through the portal and was like what IS my prognosis and to her credit she tried to call me three times and I sent her to voicemail three times and then she responded to my message with this one in the patient portal thingie:

Those words....are a bummer to read.  I mean I wanted to read them. But it sucks. This whole thing sucks!

One thing that specifically sucks is that you get all your brochures about what is melanoma anyways and they are like PREVENTABLE JUST STAY OUT OF THE SUN and also like IF YOU GET REGULAR SKIN CHECKS AND IT'S CAUGHT EARLY IT'S NBD. But....I am a fucking vampire when it comes to sun exposure. I go outside occasionally, with SPF50 and a large sun hat and sun protective clothing. And I go to the dermatologist every fucking year to get my skin checked, which is how we caught this fucking thing in the first place, y'know? And all of my pathology was like stage 0 clear margins clear margins again it's still no big deal and yet here I am with cancer that is a Very Big Fucking Deal.
And it's not like I think anyone ever deserves cancer or it would be fair if I had been soaking in the sun every day or ignoring suspicious moles but the fact that I wasn't and I didn't is just....extra. It feels like extra.

My parents had to put my childhood cat to sleep on Saturday. He was 19 which is a good long life for a kitty but fuck man, seriously?
Life is a bummer right now.

24 October 2018

Let's start back up with a downer

It's been awhile, hasn't it?

I have cancer. Metastatic melanoma.
A weird thing about having cancer (for me specifically) is that I don't feel ill (yet?), so there is a heavy element of cognitive dissonance.
A weird thing about having cancer, like just in general, is the way it comes crashing in and forces you to reprioritize your life, TODAY.
Will I live long enough that the baby remembers his mom? I should start getting in front of the camera. I should start recording my voice more places. I should start buying special books.
What special things have I always intended to do with my kids? Can I do them? Can I do them today? We should go to the snow. We should go to the beach. We should go to the city.
I need to get my affairs in order. Call estate attorney has been on my list every day for a week. I have the contact information now, at least.
I need to spend less time doing things I hate. The cleaners are coming weekly now.
I need to train my employees on how to perform my essential job functions.
Should I buy a camera? Should I buy a new phone? My phone is almost 3 years old, maybe a new phone would solve the camera problem.
Will the kids be okay?
Will Quentin be okay?
Will Quentin get rid of his fucking elliptical machine?

I already had the misfortune of learning this when Quentin was in the hospital, and on a smaller scale when people close to me passed away, but a thing about personal disasters is that they bring your friendships into focus.
I have been sending awkward texts.
"I have cancer. It's not good."
"I have cancer, a bad kind, I just wanted to let you know."
"This isn't a specific request I just wanted to let you know that I have metastic melanoma and I don't know what is going to happen next."
Some people respond well. Or "well". I have decided that the best response is some variation of that sucks and I'm sorry.
Some people respond in what feels like the wrong way to me, either with too much brightsiding or too much anger and grief directed back at me or with too much advice or in a way that makes me feel like I need to reassure them.
A weird thing about cancer is that every person you've ever met is secretly an oncologist, and knows more than your doctor about how to cure you.
Some people (just a few, but some) have not responded at all, and that is the shittiest response of all.

Some people have very good hearts but are so eager to help that it is overwhelming.

I have been getting phone calls from weird people. All of my uncles have called me. We don't have a phone call relationship. Two of my uncles, I mean, I have never spoken to them of the phone even once, in my entire life.

Anyway, I'm just going to end this here.

I have cancer, a bad kind, I just wanted you to know.