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.
Onward!
--
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.

17 February 2017

Four Things

1. I'm 16 weeks pregnant. Well, I think. I haven't been keeping very good track this time around, plus I've had my due date moved thrice. And it's just sort of hard to remember what fruit your fetus is the size of when you have 1.5yo and an 11yo and a dog and a husband and a full time job. Anyway, pretty sure that's all going as designed. I have the ultrasound where I find out if it's a boy or a girl on March 14th! Oh and I mean, also that's the major anatomy ultrasound to make sure that the baby is developing apace and things are as they should be, which I guess is more important than whether or not it has a penis. EXCEPT THAT I REALLY WANT TO KNOW ABOUT THE BABY'S SEX ORGANS OKAY. IN FACT I WANT TO KNOW EVERY SINGLE THING.
Speaking of knowing what kind of baby is in there, there's a lot of assumption that since I have two boys, we must be trying for a girl. Well, unless you are having a designer baby and literally actually picking the sex, I don't think it's a good idea to 'try' for a boy OR a girl. In fact, I am of the strong opinion that one should not intentionally get pregnant unless what one is trying for is an alive human person.
HOWEVER AND ALSO, I have two boys, why the fuck would I be having another baby if I didn't like the ones I already had??
Also, this baby, who will be 22mos younger than Everett, because of school year cutoffs will only be one grade apart, and how adorable would two little boys a grade apart be? SO ADORABLE!
I mean, a girl would be great too, I'm here for girls. I just, I am also quite fond of boys. FYI.
If I do have a girl, it makes me want to have a fourth spite baby, just to PROVE that I am not 'trying' for any imaginary gender (sex) completion of my family.

2. Work is a source of stress and upheaval and feelings of under appreciation lately. I don't really want to talk about it, so I won't.

3. Gabriel is taking ukulele lessons and it is 100% the best. He plays You Can Count On Me by Bruno Mars for the baby and the baby COOS at him and it is a god damn delight. I have no regrets about the big space between these two kids. Their relationship is amazing and wonderful.

4. The world is terrifying. I got passports for the kids. I am about two headlines away from hoarding coffee.

19 January 2017

Assortment of Episodes

Sitting at my desk this afternoon, I picked up my bottle of juice, and gave it a shake before I took a sip. Except the cap wasn't screwed on, so I just covered myself and all of my work surfaces in juice. It was a nice, vigorous shake.

Last night, I had Everett on my lap, and I noticed that his ear was red. A few minutes later, I thought, I'd better check and make sure there's not a bug in there or something. THERE WAS A TICK IN HIS EAR. It was burrowed right into the fold. We had to hold him down and hold him still and dig in there with tweezers and it was very traumatic for all involved. We soothed him with cheese. THERE MIGHT BE A BUG IN YOUR EAR. 

Last week I bought myself lunch and then I needed to go to Target so I drove over there and was sitting in the parking lot, eating alone in my car before I went in for errands. My mouth was full of Thai Chicken Wrap when a lady opened up my trunk and started loading her bags into the car. I was still trying to swallow when she opened up the back door and flung her purse on the seat. I was just getting ready to say something when she opened up the driver's side door and got ready to sit down on me. It was just then, and not a moment before, that this woman (on her cell phone) saw me. Her eyes got big, she ended her call, she backed away sputtering. I think we both wanted to disappear into the ground. Except, she had to regather her things, so our interaction went on a bit longer than preferred. After she was fully extracted from my vehicle and into her own, wherever that may have been, I looked around the parking lot. There were ZERO other cars of my make and model in the lot. NONE.

13 January 2017

Gifts for 11-year-old boy

Gabriel's birthday is at the end of this month, so I'm going to tell you about his birthday party and gifts.

First, his party: We are doing it at the indoor climbing gym. He's inviting 6 friends (mix of cousins and school friends). The party is formatted with an hour in party room, and two hours climbing. My plan is to order pizzas to be delivered there, and additionally have drinks, cake, fruit and chips.
No party favors, because I feel uninspired about favors.
I will probably buy some balloons. Maybe some other decorations (tablecloth? party napkins?) but Gabriel is at an age where thematic 'kid' stuff is no longer cool. So y'know, no minecraft table runners or anything.

Next, presents! Here is what I bought my own particular brand of nearly-11-year-old, whose interests include fiddling with things, reading, and things that will get him killed.

A subscription to Tinker Crate ($20/mo). I will give him his first box on his birthday (it shipped today). We used to get Kiwi Crate, and Gabriel was a fan, but then I canceled for the summer while he was at his dad's and then I never re-subscribed, and then he was a bit old for Kiwi Crate. Mail is very exciting, so I was looking for a subscription box that he'd like. I also considered an art box, and a survival box. Ultimately I decided that we are up to our eyeballs in art supplies, and while I think he would be SUPER INTO a weird prepper survival box, maybe I don't want to get my 11yo fire starters (for instance). He likes building things, and he likes following directions/a plan, so I am hopeful about Tinker Crate. If he hates it, I can cancel! I can also cancel if I get tired of junk in my house.

Miscellaneous clothes that he needs masquerading as gifts. He needs new pants, new socks, new underwear, a sweatshirt. I am calling these items gifts!

Pogo Stick, $40.

Slingshot, $7
I also got him this ammo, which is also around $7. It says all over the description that this is not a toy, and I know it is not a toy, but I also know that Gabriel will love it. Will I regret getting my son weaponry? Probably. I can always confiscate it if he is being too dumb.
The Chronicles of Prydain, $21 for 5 book set
These are The Book of Three, The Black Cauldron, etc. I don't know if you read these when you were a kid, but I did, and I have been meaning to get them for Gabriel. They're right up his alley, and I think he's a good age for them.
The Ruins of Gorlan, $7
So one of my coworkers reads similar books to Gabriel, and he recommended this series to him the last time Gabe visited me at work. So, I'm getting him the first book!

There were many, MANY other books that I wanted to get him, but I had to cut it off somewhere.

For Christmas he got tickets to a Warriors game (and a day at Warriors basketball camp), a Kindle Fire, a manga drawing book, colored pencils, paper, an obnoxious flying thing, and a couple pairs of pants.