16 April 2019

April Update

Without going too far into the weeds, my liver failed me, I had to stop immunotherapy, shortly after that my scans showed that it wasn't working and I had more cancer and not less, I'm doing BRAF/MEK inhibitors, my most recent scans were questionable (not definitively more cancer, not definitively the same or less either) so I go back soon to check more numbers and decide what's next.
Immunotherapy, or rather, my liver not functioning as designed, made me feel very, very terrible, and I lost 40lbs, and I can't work out anymore which is shockingly devastating to me, and I'm always tired, and sort of weak.
BRAF/MEK inhibitors are giving me side effects including a rash that is like a acne/poison oak combo (reasonably but not entirely managed with a prescription cream), intermittent fevers where I feel like I have the flu and I mean the actual influenza flu, and, most recently, severe arthritic joint pain.
It's all more or less manageable.
I'm still working.
I am medium likely to move this summer which is exciting but also daunting.
I am extremely unlikely to be alive when Arlo starts kindergarten.
New clinical trials coming online all the time of course but I don't need your cheery platitudes bro.
I had to go back to family court because it had to be ordered by a judge that Gabriel can go to summer camp and on the 8th grade DC trip and on our annual family vacation.
I hate all of my clothes and all of my bras but I also hate all of the new clothes and bras that I try to buy because really I just want my body back.
People keep enthusiastically praising my weight loss and I don't love it.
I have these horrible lumps (tumors) in my neck that make me hate.....everything (?). I'm going to ask my doctor to just hack them out of there when I see him again next week.
Plus side (maybe?) I wear my hair down all the time now (neck lump camouflage).
--
Gabriel is 13 and he loves junior high and he's made two different school sports teams and he loves his friends and he's great, even though he's also very 13 and sulky and GOD MOM *EYE ROLL*.
Everett is in preschool and also speech therapy to help with this stutter and also swim lessons to help with his swimming.
Arlo gets dragged along pretty amiably to all of the above although he is EXTREMELY wild and EXTREMELY LIKELY to run at top speed in the opposite direction if you let go of him so I need to buy a baby leash even though I've always hated baby leashes.
--
Work is good. I have been intentionally vague about my health which is my preference but it really highlights the degree to which people can be insensitive assholes.
I've been doing some light (work) succession planning, documenting of processes and procedures, things of that nature.
--
I bought a super sexy bathing suit and I love it but I have pretty limited sexy swim opportunities since I'm extremely unlikely to be in a pool without my kids.
I've been collecting fashionable sunhats too.
--
Oh and I signed all of my (personal) estate documents so I can cross that off my list.
--
My brother (my SIL!) is having baby #4 in the fall, a boy. Nothing like a fresh new baby to cheer everything up.

28 January 2019

Virtuous Cancers

I'm not sure if it's as a culture or as a species as a whole, but we are not great at empathy.
People (understandably) want to protect themselves and their loved ones from harm, and part of that is the magical thinking that if we do everything The Right Way, then The Bad Things won't happen.

Consider the way we treat victims of sexual assault. She was raped because she was at the wrong place at the wrong time with the wrong people wearing the wrong thing. This thinking makes a person feel safe. It won't happen to ME because I will be careful not to do the wrong thing.
Blaming the victim gives us a sense of safety.
If bad things can just HAPPEN then they can happen to you or to me, then no one is safe and my goodness how will we sleep at night.
There are the virtuous victims of course, the ones that were wearing the right thing and it was the middle of the day and they were tackled by a stranger and ok in this one specific circumstance we will provide full empathy but mostly we will look for ways that this could have been prevented by the victim of the crime.

I should not be surprised that Keep Me Safe Magical Thinking applies to cancer too, but it took being diagnosed myself for me to notice it. You have cancer but you smoked or you drank or you spent too much time in the sun or you contracted HPV or you grew up too close to a chemical plant.
I won't get cancer because I am keeping myself safe.
There are virtuous cancers. People are sympathetic to children's cancer. The pancreas seems to get a pass. Leukemia, lymphoma, those get to happen to you without too much examination of what you did to deserve it. If you have the Right Cancer, then you are worthy of an entire dose of empathy.

I have melanoma.
It is not a Sympathetic Cancer.
I must have earned it somehow.
Did I get really bad sunburns as a child?
Do I tan?
Well even if I didn't I'm very fair skinned so that makes sense.
Did I get my skin checked every year?

And listen.
Not only do I stay out of the sun and stay careful and get my skin checked every year, but I have melanoma without a primary site, with the best guess being that it developed internally, rendering it undetectable until it was metastasized to other sites.
If we are going around assigning Cancer Virtue Scores, that is pretty fucking virtuous.
It also doesn't fucking matter.
At all.

Cancer is never fair, and no one ever deserves it, and that includes people who drink too much and people who smoke and people who have sex and people who enjoy sitting out in the sun.
My childhood sunburn would not mean that I deserve melanoma.
Maybe a childhood sunburn DID give me melanoma; I don't know. I'll never know.

Try to move through this world with an understanding of how you react to the bad things you encounter.
We all want to keep ourselves safe from harm, but in doing so, we blame people for the harms that befall them.
And that's shitty.

24 January 2019

Am I the most boring person on earth?

I am constitutionally incapable of sustained negative brain thoughts. I'm a human person and experience what I consider to be a full range of human emotions, but my default wake-up-in-the-morning setting is contentment and satisfaction.
As a standard internet disclaimer, I don't think there is anything WRONG with anyone who operates on a different setting, I don't think I'm better than you, I won't give you weird advice about how all you need to do is have a positive attitude.
But my brain chemistry is just....not predisposed to anxiety or depression.
Anyway, I have stage four cancer.
And sometimes I feel like I should be more....sad?
But my brain doesn't work that way.
The way that my brain works is ok here is a new piece of information about your life, so what is next? You might be dying, so you should get your estate settled and make sure you have beneficiaries named and make sure you write down how to pay the bills and how to access the kids' medical records and how to access the life insurance policies. Make sure all of your important legal documents are in one place. Throw out all of your dingy underwear.
I've been doing a lot of Swedish Death Cleaning, which just seems like a natural next step, and doesn't make me particularly sad.
I have considered doing more dramatic things like quitting my job and traveling the world and gazing lovingly into my children's eyes, but I just....don't really want to. I like going to work every day and coming home at night and having dinner with my kids and watching bad network television and taking a bath. It turns out that I still want to go to the gym, which was a surprise. I don't even LIKE the gym, except that I do, because here I am, still making time for it.
There are a bunch of things on my bucket list that I haven't done and I might not do but as it turns out I don't feel that strongly about doing them now? If I died tomorrow without kissing the Blarney Stone, I still feel pretty good about my life.
I do feel pretty terrible, physically, in general. But....it also just feels like that's my new baseline. It turns out that now I need to sleep 12 hours a night. Okay. Immunotherapy induced hepatitis and ulcerative colitis are both  physically unpleasant, but...okay. I guess I'm surprised by how surprisingly just....OKAY I feel about everything.
I am being intentional about spending quality time with my husband and kids and parents and siblings and nieces and nephews, and well, my family. I took Gabriel to his first concert, and we went to Tahoe over Christmas break because I wanted to be there the first time the babies saw snow. I'm soaking up my people.
Something I feel sort of surprised by is how little urgency I feel to spend time with Not My Family. I really love my friends, I love them AS MUCH as my family, or I thought I did anyway. But it turns out when I'm looking at my Saturday plans I want to take Everett to swim lessons and I want to have coffee with my mom and I want to continue to be myself and live my normal life but I don't care one way or the other if I make time for lunch with someone. Does this mean I don't care? I don't think it does, but it was a surprising thing to learn about myself.
I have had a good life. I enjoy my days. My children are good little people and coming along quite nicely. My husband is my person. I don't feel like my life has been a tragedy or I've left all of these things undone. I have been a loved and loving person with a life that I've appreciated as I've woken up every morning.
I don't mean that I don't get sad. I cry. I worry about my family. But I am not experiencing the sustained sadness that I expected, or that I would expect someone else to experience. This is my life now, and that's okay.
I've always been this way, incapable of staying sad or mad or anxious or anything but just....okay. My default setting is okay. So it's not surprising that my default setting is still  okay, but I've been a bit surprised to realize it all the same.

The hope is that I don't die for a very long time, and until my scans next week indicate what's going to happen one way or the other, there's no reason not to hope for that, and I do.
But the reality of my situation right now is that I might die.
And I'm as surprised as anyone else to learn that would just be okay. Fine, even.
I feel, basically, fine.

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?
No.

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

23. Do you hate anyone now that you didn’t hate this time last year?
No.

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.
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.