Category Archives: fuck cancer

Report is in.

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Final diagnosis of the original biopsy:

Malignant melanoma, superficial spreading type, invasive to level II and a measured thickness of 0.5mm arising in association with a compound nevus, margins free but close.

Final comment:

This lesion is indeed a fully evolved malignant melanoma, superficial spreading type, invasive multifocally to 0.5mm. The radical growth phase is composed of prominent melanoma cells both spindle and epithelioid. They are present in very large nests and show focal pagetold spread. There is evidence of a pre-existing nevus at the site. There is no evidence of regression, ulceration or mitoses. Re-excision is recommended with a 1.0cm margin. SOX-10 and HMB45 support the above interpretation.

Positive and negative controls for all immunohistochemical stains and/or special stains prepared by the outside laboratory were reviewed, and they are considered appropriate.

From the NHS website:

Around 7 out of 10 (70%) of all melanomas in the UK are superficial spreading melanomas.

They’re more common in people with pale skin and freckles, and much less common in darker skinned people.

They initially tend to grow outwards rather than downwards, so do not pose a problem.

But if they grow downwards into the deeper layers of skin, they can spread to other parts of the body.

From Melanoma International:

Here is an explanation of terms that may appear in your pathology report:

Type: description of the particular variety of melanoma you have—superficial spreading melanoma, lentigo maligna melanoma, nodular melanoma, and so on. The superficial spreading type is the most common.

Growth phase: designation that shows whether the melanoma has reached the step where it can grow as a lump below the epidermis. In the radial growth phase, as we have seen, it is unlikely that the cancer has begun to metastasize. With the vertical growth phase, there is at least some chance that the disease has spread elsewhere in the body.

Mitotic count or mitosis: measure of how many melanoma cells are dividing below the epidermis. Only in the vertical growth phase do cells divide in the dermis. The higher the mitotic count, the more likely the tumor is to have spread.

Tumor-infiltrating lymphocytes: immune system cells (lymphocytes) whose presence in the vertical growth phase are a positive sign. Presumably, lymphocytes show that the immune system has recognized the tumor and is attacking it.

Greatest thickness: the Breslow thickness. A measurement of a millimeter or less is considered thin—and means a favorable prognosis.

Site: location of the melanoma. Patients with a vertical growth phase melanoma located on an extremity have a relatively more favorable prognosis than those on the trunk or head and neck (a subtlety is that a rare subtype of melanoma that, unless the lesion appears on the palms, on the soles of the feet, or under the nails acts like trunk lesions).

Sex: gender of the melanoma patient. For unexplained reasons, women have a better prognosis than men.

Regression: An attribute that may be either absent or present in the radial growth phase (which is adjacent to the vertical growth phase). Regression is evidence of destruction (probably by immune factors) of some of the melanoma cells in the radial growth phase. Immunologically mediated regression of this sort is a weakly negative factor.

Level of Invasion: the Clark level. Mine was a level IV tumor—that is, the melanoma had penetrated to just above the fatty layer of the skin.

Precursor Lesion: Evidence of a pre-existing ordinary, dysplastic, or congenital mole from which the melanoma might have developed. My melanoma came from a dysplastic nevus. Although dysplastic nevi are the most common precursors, common moles and congenital moles may also be culprits. For many melanomas no evidence of a precursor shows up.

So what I’m getting is that I definitely need to have a larger chunk of skin removed, but it probably didn’t get very deep or spread to other areas.

Thank you, Noah for telling me I had to check this out.

So it goes

All four showers in the house are jacked up and need repair. That’s pissing me off. The boiler system needs to be replaced. Most of the sinks are draining slow and need to be snaked. So basically, all the plumbing is shit.

Slowly fixing all the electrical shit that’s fucked up.

I’m pretty annoyed about just how much needs to be fixed. And how expensive it is.

Don’t know the results of the biopsy on the melanoma. Results are being snail mailed from the US.

We are working on our diet to be more centered on general cancer prevention though. That’s going to matter if I want to be here for decades.

Working on the book already. Why bother waiting for November? I’m not shooting for 50,000 anyway. I think this will be over 100,000. I have a lot to say to the kids. It hurts.

What do you mean second?

Well, when I was about 21 I had cancer cells removed from my cervix. Thank you HPV. I caught it fast. I treated it fast. It hasn’t mattered.

But now that I have a second form of cancer… it matters. It is showing a pattern. A predisposition. And I’m very young for skin cancer. It’s a really bad sign that I’m getting it before 40 because even if this round is caught early and treated in a proactive manner… I’m very likely to get it again. It is more likely to spread to being other kinds of cancer in my body.

I am having big feelings about the fact that the man who gave me HPV (he knew he had it and he didn’t disclose it until after I came home sobbing about what a horrible person I was for having this disease and I’m so sorry I exposed you to this, I don’t know which one of my partners gave me this…) also used to enjoy giving me sunburns on my back because it was funny. He liked knowing I was in a kind of pain I couldn’t get away from.

So much for “risk aware consensual kink”. That relationship did a lot to harm my body permanently.

Oh, he’s also the partner who broke my arm.

I HAVE SPENT SO MANY YEARS TALKING ABOUT HOW GREAT HE WAS. Maybe just being better than my rapist/serial pedophile father isn’t a high enough bar.

Cancer. Again.

I can’t sleep. Future will eat me.

It’s not a very aggressive form of cancer. Malignant melanoma. But I’m basically freaking out. I had cancer before, when I was 19. Then it was from HPV and on my cervix. It was burned off. This time it will be carved out with a knife and I get to pray I don’t have to undergo radiation.

I’m scared and sad. I don’t want more pain.

I’ve told myself for many years that if I get cancer… I get to just let go and stop trying. I get to die. It’s my right.

But I look at my little 20 month old baby and my 9 year old and my 11 year old… they are not ready for me to go. If it’s worse than expected… I have to fight. I have to fight with everything I am. And I’m told I am a whole lot of extra.

I promise that if I am fighting cancer I will hire house cleaners. Stop bugging me.

Tonight I miss my mother so much I feel like I could collapse under it. I’m crying on and off.

My baby is downstairs crying too. She wants me. I am being selfish. I need to look into my brain and at my feelings right now.

If I have to have radiation, we must wean. That would be hard on so many levels. She loves nursing so much. But she’d prefer to have me whole and alive than to nurse for a few extra months. I know.

It is hard knowing that I can’t give up because I have to keep supporting my kids. I mean, Noah would miss me and that would be terrible. I went to the doctor in the first place because Noah asked me to. Noah told me that I should keep hanging on because after all… he bought me my dream house… I haven’t even put art in it…

I CAN’T DIE WITHOUT KNOWING WHAT THE FUCK LUCREZIA IS DOING AND AT THIS RATE THE GOD DAMN FOGLIOS ARE GOING TO TAKE ANOTHER 20 YEARS TO WRAP UP THIS STORY LINE. (Girl Genius comic book reference.)

But Noah. I have to stay for Noah. He’s even treating his eczema so it can be more fun to rub on him. That’s a lot of effort on his part.

He is trying so hard to be pretty for me. I like the way his hair is growing out. I like how he is trimming his beard. He is working hard on exercise so he can be healthy and strong.

I’m just… really scared of more pain. I feel like I am a coward, a whiner, a pathetic person who just needs to suck it up. Everyone suffers, Buttercup.

Just… fuuuck. I could have used a break for a few years form bad things.

Now I understand “fuck cancer”

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For most of my life I have been kind of confused by the “fuck cancer” emphasis people have. They seem to be more upset by it than other kinds of death. I’m a death-is-death-how-doesn’t-matter person. Only in the past couple of weeks Kate Bornstein (who is one of the most important voices in gender deconstruction) has had a crowd source fundraising effort because she has cancer–we need her. She has the courage to speak about things that must be spoken about. She is really important.

And another person I know has 6, 4, and 2 year old children. Kate is very likely to survive. She has a very survivable kind of cancer and now the outpouring of love and money she will need to fight for life. His survival chances are in the single digits.

I can’t stop weeping. I “know” my grandmother died from cancer. I don’t know what kind–not breast cancer. I know that much.

The kind of knowing I want my children to have for me is something that cannot come until they are adults and putting it all together in retrospect. I think that I all of a sudden just received a catapulted stone of fear in my belly. How will his children know him?

He told me just before he found the lump that I had inspired him to start marathon training. That process was more or less how the lump started bothering him. That’s why they found this. I told him to start making videos for his kids. One for each birthday up until they are 25 or 30. They need to know you and get the advice you would give them.

Shanna was asking me about parents yesterday. Kind of the standard kid question kinds of things: do only Mommies take care of babies? Oh dear goodness I hope not or a lot of kids would starve to death. I told her that some babies have only one mommy or only one daddy and some babies have a mommy and a mommy (or mama) and some babies have two daddies and some babies have more than two parents of any possible gender consideration. What matters to a baby is that consistent grown ups hold and care for and love the baby. That is all that is needed to make a parent. Not biology. Not anything else. I said that babies are designed to fall in love with the grown ups who care for them because that is how the baby will ensure survival. Mutual love with a grown up means the grown up becomes invested and puts a lot of time and energy towards the baby.

She said, “So it doesn’t matter if it is a boy or a girl?” I asked her how many times it has mattered whether I have a penis or a vulva while I change diapers. I asked her if she thinks our female friend K is too stupid to figure out how to clean her son’s penis. Shanna laughed. I asked her if her father has ever had trouble wiping her butt. She confirmed that he is a poop wiping expert. I said, “Anuses are universal.”

She asked if girls are supposed to stay home with their babies. The timing on this conversation was just hilarious considering what I have been reading on the internet lately. I said girls are supposed to do the things that make them happy. By being happy in front of their kids they are teaching their kids the right way to live. For some mothers this means staying home and for some mothers this means working outside the home for a company. All mothers work. All mothers do a back breaking amount of work. If a mother has an outside job then the children can either stay with dad (I cited families we know) or if both parents work day care of some kind can be arranged (I explained several different examples we know).

Every family looks different because every family is made up of different people. Different people are made happy by different things. That is what makes life beautiful. If everyone was exactly the same life would be really crappy. Every person is on a completely individualized path through life.

I said that different people have different advantages. I talked to her about money. I talked to her about how some people have large extensive families and that is a different very important kind of support. It gives different life options. For example: single parenting is a very different experience if you are rich than if you are poor. Single parenting is a very different experience if you have a large and involved family than if you have no family support. I went on and on. She asked more questions. It kept going.

I tell my children frequently that while they are children they have a few specific jobs they have to work on. Their primary job is to play with the world. The process of play and exploration is the primary thing that children should be focused on. After that you have to learn how to have relationships with people; you have to learn how to be considerate. But the third thing is: with great privilege comes great responsibility. I tell my children explicitly that they are part of the most privileged cohort that has ever been born. They have more access to information and the ability to learn than any person has ever had at any point in history. And my kids have free access to it all day every day because they are not locked in an institutionalized setting following some bullshit agenda that is the resort of so much compromise nothing real is taught. I expect them to take learning seriously.

I talk about how the world is changing and there are a lot of people in the world who do not have access to information. There are a lot of big problems to be solved. People will have to be exceptionally able to synthesize large amounts of data in order to solve these problems. People will have to learn a bunch of cross-disciplines in order to solve these problems. The only way is to start young and take it seriously. Learn.

I tell my kids that I want them to grow up and be fierce and sure of their opinions. They should not believe they are “always right” because that is hubris–no one is always right. But listen to Davey Crockett: Be sure you’re right and go ahead. Plan at leisure; act with haste. If you hesitate then some someone less qualified will speak first and set the plan. That’s really not a great situation. If you can’t find a way; make a way. You will make mistakes or you will never learn and grow. You must make big mistakes. That is part of life.

Even if I get upset with you over a mistake I will get over it. I love you more than I love breathing. More than I love any thing in the whole world. I will get angry with you. I will shout at you. I will never hit you. I will always love you.

Thinking about cancer makes me feel so very afraid of my children not knowing me. Shanna proudly informed me that she was going to grow up and be a bad ass just like me. I laughed. I told her that would make me very happy. I want to see that. I want to see what she is going to be like. I want to know her. I want that so fucking much.

Getting to see what Shanna will do in the world will be my entertainment and reward for still being alive.

And that’s before I even get to Calli. Calli is a born engineer. She is going to need to have a woman behind her saying, “You can do it” for a great many steps in her life. She is going to live in a “man’s world”. Hell she already wants to be Diego–not Dora. Not Alicia. She’s Diego. She’s the god damn main character who rescues everyone.

They need me. It is so clear. Like my friend’s children need him. And I start weeping again and I understand fuck cancer.

There is no right. There is no should. There is no deserve in this life. There just is.

On April 1st it will be the birthday of one of the awesomest women I know. I’m sorry I won’t be in Portland with her. That would have been wonderful.

In other news I am exchanging books with a friend who is also a writer on April 1st. We are essentially work-shopping one another’s books. You know, a real forking editing job. I’m ridiculously excited. I want No Secrets to be finished and I have stalled. It has been almost a year and a half since I wrote it and it still isn’t in paper. Erf.

In September Noah is officially off the leash and he gets to start being a mostly absentee father/husband while he works on whatever he wants to work on. I’m thinking about treating July like my own personal NaNoWriMo. I want to write Outrunning Suicide before I have a hard time negotiating for time. A lot of the shape of it is working itself out in my head. Stylistically it will not resemble No Secrets. That’s for the best. I’ve been reading reviews of writers differently lately. “What will they bitch about with my content–repetitiveness. I can’t just tell the same stories. Hm. Interesting.”

Sometimes it is kind of convenient that I have been through such a ridiculous variety of kinds of extreme trauma. I always have another fucking story. Ha.

A few times lately I have thought about my mother. I’ve thought about what will happen when Shanna is eighteen. Shanna might want to meet my family. She will be allowed to. I’ll drive her to the house and wait at the bottom of the hill for her. She doesn’t have to share my views on them. She didn’t make my bed; I did.

Shanna asked me if I loved my mommy when I was a little girl. I told her that when I was a little girl I thought my mommy was the best thing in the whole universe. I loved her with my whole heart. She was my sun and my moon. Shanna then pointed out that I don’t feel that way now. I said, “No. I don’t. You will have different opinions when you are in your thirties than you have right now too.” She looked thoughtful.

It is really hard giving space for beliefs that are not your own. If I break the incest chain in my family I have absolutely done a measurable good in the world. I just found a biography from someone in the middle of a six generation chain. My stomach hurts too much to read it right now. At some point in the not-too-distant future I will have read everything easily findable on this topic. That’s a little weird to know. It makes me want to create more data.

Life goals:

I want to deepen and broaden the scope of information known about incestuous families. At some point I will figure out a measurable goal around this topic. I don’t have it yet.

I want to live outside my country of origin for a minimum of five years, preferably in one year chunks. I’ll get homesick bad.

I want to see what Noah can do. He has really impressed me so far. I want to see what he and I can do together.

You outrun suicide by giving yourself full permission to do it, but you keep moving the goal posts. “Ok I can do it. But first I have to do…” It’s on the to do list. But a lot of other things are going to happen first.

I want my children to be adults and to be able to say, “Yeah. I agree. It’s time. I love you. Do what is right for you.” Maybe I will have to move to Oregon once I hit 70. When I get there I will get to be near a friend of mine. She is partnered with one of the people who pushed that law through. I feel so grateful that I get to know people who change the world. They give me the courage to keep trying.

Holy fuck. I just had a thought. What age level is Outrunning Suicide aimed at? If I want a lot of people to be able to read it I have to think about that. My writing is rather obtuse most of the time. Well that will take some thought.

When I was a child there were very few periods of time when I didn’t want to die. I stayed alive mostly because I was too depressed to be expeditious. I didn’t know anything other than pain. I was not permitted to act like I was in pain. That was rude.

My life is different now. I didn’t understand what a life free from pain was. It was a myth. I wouldn’t say that I am exactly pain free at this point but I am probably at the lowest level of pain and the highest level of joy I have ever had. These are the best days of my life. And I know it while I am living them.

I keep wandering in my head to a Madeleine L’Engle book A Wind in the Door. The mitochondria are in trouble! The farandolae aren’t deepening! I just read Collapse by Jared Diamond. Help! The planet is in trouble! The humans aren’t deepening!

I don’t know. Lots of feelings. Today I don’t want to die. And I weep at the loss of a great mind. I hope he doesn’t read this. My grief is not his problem. I’m glad his wife has a very supportive family. I’m glad they live near her family and not his. I am so sorry it is happening.

I’ve read tragedies for years. I’ve taught units on tragedy. I never really got it before. I’ve never been deep enough into a community to really understand what the loss of a person means before.

He’s going to fight. He’s that kind of guy. My grief is entirely premature and I need to stfu. But this is where I feel.

I have spent most of my life believing very firmly that for me cancer was one of the goalposts. I wouldn’t fight. I would go quietly into the dark night because I’m not interested in more suffering.

Life is pain, highness. Anyone who tells you different is selling something.

Now I don’t know. When I think about the things I want to do. When I think about not seeing my daughters grow up to be fierce and bad ass? (She-Ra is pretty bad ass is a frequent comment around our house. I said it once. Oy.)

There is no right. There is no should. There is no deserve. There is only what is. And what you go do with it. We live in a time of practically preternatural access to science. If you have money. If you want to fight something bad enough we live in a time of honest-to-goodness miracles.

How much do I want to see my daughters at thirty? Forty? Fifty? Sixty? What will they do with their lives? I want to know so very badly. I am curious. I want to know. I want to see what this being I have unleashed on the world will do.

Somehow I don’t envision her walking onto the family compound at eighteen and not coming back. It’s thirteen years away. She’ll be able to evaluate people on her own at that point. She will have had a lot of practice with a lot of different kinds of people. She will be able to read people well. My family isn’t subtle. Even if she does want to get to know them–and why not, they are interesting people–she won’t want to stay.

She will have shit to do. My family has nothing to do but be unhappy. They will sit in one place doing that until they die. I don’t understand why. It’s like a clock that has run down. Poverty, physical health, mental health, and a kind of apathy I don’t understand. An anger about entitlement and responsibility I don’t understand.

I have had such a ridiculous amount of privilege. I’m only starting to understand the shape of it.

I have had the privilege of being able to set the goal post of “I’ll kill myself if” pretty low but I’ve been healthy enough to always meet a really ableist centric attitude. I have been able to be an asshole about independence. I’ve also had a guaranteed income for most of my adult life. I’ve been financially stable without having to have a job. That’s so fucking ridiculous.

I have no safety net though. I don’t have Bank of Mom and Dad. I don’t have emergency reserves beyond those I create. For most of my adult life I was inches above the poverty line living in one of the most expensive places in the world. I have never come close to bankruptcy and my credit score is ridiculous. I did that with a lot of seed capitol. I feel like an asshole for being glad that pit bull attacked me. It made the whole rest of my life better.

Perspective if everything.

I’ve been thinking about my mom. I have been specifically thinking, “I forgive you. I hope you forgive me.” If my kids ever go and meet her I hope my mom understands why I kept them away. My kids will be different. They will not have broken spirits. I hope she will be able to see that and be glad. I hope she will forgive me. I hope she understands wanting to keep your kids safe.

I hope she will forgive me.

I hope she will still be alive so that she will be able to meet my kids some day. I hope my kids want to talk to her a lot for a while. I bet she won’t live long after that but she will die happier than she has been in a long time. They will be like her. They will be able to ask her questions about things she has had great skill at doing. They will think she is an interesting person.

It’s kind of a weird balance. I have to tell the truth to my children. The truth is that no one is all bad. Everyone has good parts. The thing about life is learning how to find the good that balances the bad and evaluating if the value is high enough. In most families people decide that the kin alliance is worth putting up with the bad. That’s normal and right.

When my kids are adults they will not be children who are easy to mold. They will not be instructed in how sex is natural and fine between family members as long as you don’t breed because it is only in breeding too close to the line that you develop problems.

I hope that when my daughters are eighteen they will have the ovaries to say to a biological family member who solicits sexual contact, “You are a disgusting piece of shit and I hope you rot in hell.” Because yeah. That’s the reaction you should have to incest.

But I don’t think my family would dare at that point. And if everyone keeps their britches on, it’s fine… right? Oh fuck. *beat head on wall* Wait. I’m not supposed to do that any more.

Maybe I should get dressed and run. That would be all healthful and crap.

I want to live. I have stuff to do. I’m scared. Fuck cancer. I can’t be strong enough to outrun it. No one can. It just happens. Am I going to instantly stop smoking so I can lessen my risk of lung cancer? No. I wouldn’t be a nice person. (Vaporizer is still impact on the lungs. My lungs will tell you.)

On the way I will eat more Easter candy. My body says: “Hey, I know-instead of crying: sugar rush and endorphins!” Is this ideal? Nope. We recognize two candy-holidays a year in this house. Otherwise I would get in a long of trouble. I didn’t eat candy like this when I was a kid. It’s kind of weird.

Ok, run.

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