29 October 2019

Lizzo

Last night I went to a Lizzo concert and it was WILDLY outside something I would normally do. I drove two hours away to a big city even though I find driving into big cities to be intimidating, I did it on a Monday night even though I for sure had to work on Tuesday and extra hard on account of leaving a little early on Monday. We are currently affected by the California PG&E power outage crisis and I haven't showered since Saturday and my hair is so oily and my house is so dirty.
IT WAS SO FUN AND I AM SO GLAD.
Back in June when I bought the tickets everyone I invited was basically like What's a Lizzo and my friend Amber was like whatever I trust you let's do it. Then my sister and a few of my other friends found out what a Lizzo is in the least hip way possible, via NPR, and they bought tickets, and a couple of my other friends were in San Francisco for unrelated reasons and it turns out that THEY bought tickets and it turned out to be this WHOLE BIG GROUP OF MIDDLE AGED LADIES DOING A FUN HIP THING.
It will take me at least a week to recover from the sleep deprivation, (light) weeknight drinking, and work reshuffle, but it was WORTH IT.
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One great thing about Doing Fun Things as a middle aged lady, which partially offsets my inability to recover on Tuesday morning, is that we can just afford to buy the tickets we want and pay to park at the venue and eat at the close by restaurant and order the fancy top shelf cocktail.
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Anyway, if you find yourself being offered some sort of analagous opportunity, I am going to heartily suggest that you just DO IT, even though there are one thousand reasons to not do it.
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Also, Lizzo. Lizzo is transcendent. Like a religious experience but for the badass empowerment of ladies, while wearing a french cut thong leotard.

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).
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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.
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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.
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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.
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Oh and I signed all of my (personal) estate documents so I can cross that off my list.
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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.