Don't Give a...

During the darkest and most trying days of the chemo/radiation ride, I was profoundly focused on one thing: getting through. As a result of this focus, I did not give a shit about anything else. I would not have given a shit had I had a shit to give. I didn't have two shits to rub together.

This feeling of not giving a shit was also profound, and probably necessary. I never even considered what my hair looked like or whether wearing sweatpants in public was unattractive. Or if wearing a stretchy, comfortable tank top in place of a bra would make me look overweight. I knew I was pale, that my face was bloated, that my jeans were simultaneously too loose when I walked and too tight around my waist when I sat down. But did I give a shit about what anyone else might think about all this? No shits. It did not even cross my mind to give a shit.

As my brain came out of the foggy, confused, exhausted state that it was in, some of those shits came back. I knew I was feeling better when I started to wonder if it was time to go get a haircut. I haven't had a haircut since January. Awkward-growing-out-stage describes the past 6 months. I'm glad there are no photos, but mostly because seeing myself the way I looked would probably bring back the nausea and other discomforts I was truly suffering from.

You know what I didn't suffer from? I did not suffer because I didn't look good. I remember thinking to myself, as I was half-passed-out on the bed after getting up to go to the bathroom for the fifth or sixth time in the middle of the night and while experiencing a kind of hot flash that made me break out in an instant sweat: oh please just let my body work like it used to after this is all over.

Operative word: work. I want my body to work the way it used to. I want to be able to go for a run, even though it's hard and sweaty and makes me breathe heavily. I want to be able to drag myself, a sleeping bag and pad, a tent, more clothing than I need, a first aid kit, rain gear, and a bicycle, up and over a mountain. I want to be able to eat and drink the foods that make me feel happy and satisfied without my throat feeling like it's going to close or my stomach cramping up painfully and making me feel so sluggish that I am forced to lie down.

Sadly, the culture training I've been bombarded with for most of my life was more deeply rooted than even chemo and radiation could penetrate. I once again consider what I'm wearing before I walk out the door. I run my fingers through my hair, hoping that it looks intentionally messy and not just untended. I don't prefer looking like a slob, but I wish I could stop judging my body for what it looks like - something I've done for as long as I can remember. I've started to look at my body again and consider what would improve it aesthetically and it's such a waste of energy.

I've been wanting to write this blog post for a while - in fact, ever since I started giving a shit again and I realized how disappointing that was. This lovely essay from a writer friend of mine reminded me that I wanted to write about this. Her words nail the whole idea together nicely, in the context of the anti-aging industry and working with truly beautiful elderly people.

I now know what it feels like to simply love my body and wish only for it to have the capability to recover and survive. I wish I could stop giving a shit again. It felt so good. I was liberated from the judgements that I weigh against myself on behalf of society. I don't need that shit. Nobody does.

What is Cancer?

Before being diagnosed with cancer, I had ideas about what cancer is and what causes it - and of course what I should be doing to avoid it. I've lived a pretty healthy life, believing that the choices I was making would protect me from diseases like cancer. Oh well. 

Cancer is a scary word for most people, and a big part of fear is a lack of understanding. For me, understanding what was happening inside me has helped to make it all easier to deal with. Understanding has reminded me that it's not worth my while to do anything I might regret, including being afraid and paranoid about cancer and what might cause it.

It's not my fault that I got cancer and cancer is not some inherent weakness that should be judged or pitied. People say I'm brave for writing about my experiences so publicly, but it doesn't feel like bravery. It seems like a logical thing to share. My experience can (and already has) helped other people to be more cautious, getting those check-ups that are easy to forget to schedule. Others have said my blog is helping them to deal with diagnosis and treatment. And some have pointed out that if they admit to their peers, colleagues, employers that they have cancer, they will be judged, pitied, deemed weak, and written off - hence the sense that what I'm doing is brave. 

I abhor the secrecy with which we treat medical problems, as if we should be ashamed on top of sick, sad, confused, and afraid. That's one good reason to be public about cancer. Even vaginal cancer. 

a candle in a paper lantern

This post is about understanding cancer. Of course, if cancer was better understood, it would be less of a problem. Cases of cancer have been recorded in people for centuries, but treatments have progressed slowly. For a very long time, cancer was just a thing that nobody could do anything to reverse. In the last sixty years, doctors and scientists have done a lot of experimentation, looking for "a cure". What they've discovered is that cancer is many things and that a single cure is unlikely to ever exist. However, we're slowly getting to the point where certain cancers are being cured. Not just bombed out of existence, but reversed quietly, successfully, completely. 

If you're curious about this stuff, I'm going to (again) recommend that you read The Emperor of All Maladies by Siddhartha Mukherjee. If you're not ready to read a history of cancer and its treatment, I can understand that. But I also think it's good to know the basics. Even if I understood some things about cancer before, I have been surprised by how little I knew and how much I was wrong about. 

Just a Lump of Tissue

Cancer tumors are just lumps of tissue. They do not poison your body, they are not dangerous in a vacuum. The problem is that they grow and grow forever, eventually blocking off the functions of your body. Tumors in the lungs destroy the healthy tissue just by being there, and then it gets harder and harder to breathe. Tumors in the abdomen or pelvis can rearrange internal organs, keep the stomach from properly digesting food, block the intestines, and take over organs, like the pancreas or liver, which we need and use every day. 

Without proper function of the organs, the body cannot continue to live. Organs are made of tissue, tissue is made up of cells. Most tissues are built by and of healthy cells that know what your body needs. Cancer tumors are made up of cells that are so selfish and out of control that they ultimately destroy their own environment.

This is why someone who seems and feels healthy (ahem) can suddenly be diagnosed with cancer. 

I am not even going into leukemia or other cancers that do not present as tumors, because I don't know enough about them. But they also involve the proliferation of cells that inevitably out-compete the healthy cells and cause malfunctions of our basic bodily systems.

The elusive Waldmeister

Mutations

Cancer cells are mutated cells. That means they start out just like other healthy cells and then something changes in their DNA to make them act differently. The mutations can be caused by a wide variety of things. Some are passed through families. Others are obviously environmental, some avoidable, some unavoidable. 

One problem is that we do not understand the vast majority of mutagens, the causes of mutations. We know that smoking tobacco causes cancer because the mutagens in tar are very effective. Don't breathe asbestos dust, either. We know that diet is probably part of the problem, or that it can be part of the problem. Psychology probably plays some role. The way we've messed with the environment and the food chain is also a pretty big suspect. Breathing exhaust from cars, buses, trucks, ships, etc is an obvious one. Again with the fossil fuels. However, most are just guesses. We're looking backward for a reason, a poor way to distinguish actual cause and effect.

And cancer cells haven't just mutated once. It's not that they are happy cells one second and then they mutate and turn into tiny demons. They mutate many, many times. It can start out slowly, which is why women have Pap smears. The initial mutations - of cells that are on the path to becoming cancer cells - are visible. If the doctor can see it before it's actually cancer, it can be stopped before it learns the skills that allow it to spread and become a real problem. 

Amazingly, many of the mutations of cancer cells give them skills of healthy cells. For example, one mutation adds the ability to create blood vessels. New capillaries stemming from local arteries can bring food and oxygen to cells and tissues, something every cell needs. It's really cool that our bodies can build a food network! But when cancer cells learn how to feed themselves, it's not cool at all. 

The most famous malfunction in cancer cells is their ability to reproduce indefinitely. Cancer cells are immortal. Immortality is very unhealthy, believe it or not. Immortality in cancer cells is caused by two genetic mutations. The first permanently presses the "on" button. The second is the loss or destruction of the "off" button. It may sound like these are the same thing, but they're two different things. Either one is very bad, but some cancer cells have both. Healthy cells know when to die. Cancer cells do not.

Cancer cells learn their many skills and acquire mutations over time. One mutation might be inherited, the next might be from breathing crappy air, the next from smoking cigarettes, and another caused by a virus. At some point, cancer cells learn to travel locally or in the bloodstream and lymph system. Then they survive in other tissues besides the tissue where the cell originated. That's called metastasis. And it's bad because it's currently much harder to treat cancer cells that are traveling all over the body. This is why early detection is a big deal.

Cancer's World

So it's cancer's world and we're just living in it. Cancer is immortal and takes over anywhere it gets a foothold. What can we possibly do!? 

Now that we know more about genetics, mutations, and the problems of cancer, we're doing some really great things. The best research looks at a specific mutation and then tries to shut it off. 

In the UK, a pill designed to change a certain protein in a very particular type of lung cancer may reduce the growth and spread of that form of cancer. There are other examples that have been even more successful, and I read about them in The Emperor of All Maladies and can't remember them right now. But the idea is that if you identify the protein that embodies the mutation in the DNA, you can work to fix the mutation.

My favorite option so far is being studied right now at Stanford. It's worked well on mice and now they're trying it on humans. They've targeted the invisibility of cancer cells. Yeah, they're invisible too - at least to the immune system. The immune system doesn't see cancer cells as a problem, and at Stanford they think they know why. So they hypothesize that a certain protein will fix that particular mutation (the invisibility mutation) and put the immune system on the alert. And... well... the immune system is better than magic.

Actual Treatment

That kind of research is going on now, but the standard treatment for cancer is still the atomic bomb version. Just kill all the bad cells without killing the patient; that's a type of cure. It's not as bad as it used to be, but if you've been reading this blog you know that it's not exactly nice. For a long time, the lack of understanding about the way cancer works has kept us from finding a really effective cure, but it hasn't been entirely fruitless. Chemotherapy, radiation, and surgery work to cure many people of cancer by simply removing or killing all the mutated cells. It's not an exact science, but it's getting better and better.

There are other great studies going on which are not related to genetic mutations, like the one about mole rats. Or the crazy "cancer vaccine" idea, which my doctor dismissed in my case because he was not willing to experiment on someone young with a relatively good prognosis. As cancer is studied further, we're learning a bit more about what actually causes cancer, which would be the real solution. Stop it before it starts, right? But it's not easy to isolate and identify exact cause after the fact and we can't test out mutagens on humans just to see what causes cancer.

The exciting stuff that is happening right now, in my opinion, looks at the way cancer works in the body. It won't be long now. Some solutions have already been found for some particular cancers. More will be created in my lifetime.

rhubarb cake and homemade ice cream: cancer cure

What Can We Do?

Cancer is really lame, for humans and animals - especially for the millions of mice that are making it possible for us to one day have cures. 

But cancer is not one single thing to be terrified of. Besides the obvious (quit smoking!) there are very few things we can do to avoid cancer. And not everyone who smokes gets lung cancer, nor does every lung cancer patient have a history of smoking. We know about smoking tobacco because the incidence of lung cancer in cigarette smokers is so ridiculously high, but it's not the only factor. We still don't know enough about the causes of most cancers. We've got a better handle on the mechanics, but what I've described is a very general idea. Each type of cancer operates in its own realm, very literally. The individual immune system and the body of the patient play a role as well. There are still many more questions than answers. 

The bottom line is that you shouldn't worry about cancer unless you have to. I am not worried about cancer. What good could possibly come of worrying? What exactly should I be doing right now? Stop eating sugar, don't drink alcohol or caffeine, go gluten-free? If making those changes helps some people, they should keep it up. But there is a contradictory study for each conclusive study out there and I'm not in the business of stressing myself out over each bite of food I ingest. I take care of myself, eat healthily, and indulge from time to time - because that's what makes me happy.

I haven't stopped riding a bicycle because sometimes people die while riding bicycles. We don't wear helmets when walking down stairs because some people die of head injuries while walking down stairs. Everyone dies. It's a cliché for good reason and I hope it doesn't take disaster for you to realize the truth in it: life is short. Do what you want to do right now and enjoy what you've got.

in the woods, smelling the flowers, enjoying friends

Feeling Better, Moving On

We're out of Berlin. It was a bit of a mad dash at the end, cleaning our apartment until it sparkled. Joshua cleaned the walls in the kitchen as well as every surface, counter, shelf, piece of silverware, silverware drawer, plus he needed to mop one more time before we left so there were no footprints. I did some cleaning, including wiping down the bookshelf I used as well as cleaning the surfaces in the bathroom. I am a lucky girl.

During the two days before we left, I had three doctors' appointments: gynecologist, surgeon, and radiologist. A final check-up before the next check-up. I've been having terrible stomach pain, sometimes after I eat, sometimes after I drink too much water or a glass of juice, it just depends and the causes seem to change. For example, sometimes coconut water is great and doesn't cause pain, but other times it will cause pain - perhaps after I eat something that it doesn't work well with, I guess. Mysterious stuff.

All three doctors got the full story with all my symptoms, etc, and all three said I probably have gastritis. That means inflammation of the stomach lining. They all believe I should be taking a proton pump inhibitor (PPI) which stops the body from releasing certain acids to the stomach. These are acids that break down proteins. I am still having pain and managing it by stopping eating or drinking when I have a bit of pain. That seems to work, most of the time. But I do need to eat. I'm also drinking water with 'Heilerde' or health earth. It's a kind of clay-like earth that parrots eat so they can eat poisonous fruits without dying. It soaks up the acids and poisons in the body. It's delicious. I've also been taking a stomach cramp herbal medicine which really does the trick. Going to have to stock up.

We're back in Saxony, where we house sat last summer. It's glorious. There are fewer goats, but now there's also a dog.

Willow snack. They stripped the bark, too.

The farthest one is actually a dog, trying to figure out what the goats are enjoying so much.

I drank some fresh goat's milk. That's right, fresh from the goat and still warm. Just what my body needs after the nuking it's had. I grew up drinking fresh goat's milk and it's probably a key food for my microbiome. Been reading about the microbiome and I think mine is struggling. So I'm very, very hesitant about taking antibiotics - which is what the radiologist said I might need if the gastritis symptoms don't clear up in three weeks or so. Of course, I'll take them if it's a risk to forego them... but man, my body could use a break. I don't even think the PPI is working and I would prefer to be able to digest proteins, but I'm giving it a chance. My surgeon doesn't think antibiotics will be necessary. I said, 'but if there's a bad bacteria...?' and he said, 'Yeah, which one? You'll kill them all.' Exactly. What I need is balance. Not more nuking.

At this point, I'm feeling pretty good. It's been over a month since the last radiation and I can't even remember exactly how long ago the last chemo was. Probably six weeks or so. We've been on a few long walks and I'm reeeeally hoping I can start running with Joshua again. He's been running almost every day and he's up to being able to run 5k straight again. I'm jealous. Here on the farm I've been helping out a little in the garden, weeding and collecting herbs for Kräuter Butter. It's exciting to be able to walk around and visit the animals. Playing with the kids (human) is also pretty fun. That's where I'm at. 

Dr. Halwani (surgeon) said that I should get some lymph drainage physical therapy in order to avoid pain and complications when I start being physically active again. So I have a prescription, just need to find a physical therapist. We'll be in Zurich, house sitting, for the next two months. I think I'll find someone just across the border and take the train into Germany once a week, or whatever. It'll be cheaper to take the train and get PT covered by my insurance than to pay for PT in Switzerland. Don't have to look it up to be pretty sure about that. And in the meantime I'll keep walking.

I'll have to go back to Berlin for an MRI or CT scan, so they can review what the radiation did. Radiation still 'works' for 6-8 weeks after the last treatment, so they want to wait until then to see how things look. Then I'll go back every 3 months for biopsies and testing. Let's all keep our fingers crossed that they never find anything to be concerned about ever again. In the meantime, I'll probably do more blogging over at Where is Your Bicycle. Because the story of where ours are right now is classic.

I'm feeling a bit like the first four leaf clover I found today. 

A little bit thrashed, but lucky nonetheless.