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.

Recovery is Slow; Steady

We've passed the two-weeks-after-last-treatment mark, which feels like a big deal. The doctor said that I'd be on medication for "one to two weeks after the last treatment." I've been trying - and failing, miserably - to come off nausea medication, but I'm taking much less than I was a week ago. I've finally taken some action - bought fancy French creme with the help of a dear friend and a dear pharmacist with a florescent pink scarf and matching florescent pink streak in her hair - to deal with my continuing bathroom woes.

But my brain is coming back. Thanks to walks and fresh air.

the walnut trees are just starting to show leaves

the size of road I prefer

the size of town I prefer

so green

The sun is out today so we're going to enjoy it. I'm glad I can.

a view from the grass

the church at sunset (view from our bedroom window)

Relief and Suffering

Well it's over, for now. My bits are not happy and in full panic mode and my guts are achey and uncooperative, but at least it's not going to get any worse.

I had another attack of the killer knee pain, this time probably because I was trying to get off the fortecortin for good. It took 1800mg of ibuprofen plus 200mg of Tramal (synthetic opiate) over the course of about 3 hours to get it to go away. But that did it and I fell back asleep at about 7:30am, after Joshua had gone out for cash and prepared to get me to the hospital. Great way to spend a Saturday morning. We both slept until about 11am after that, and I spent the entire day in bed, mostly sleeping. Sunday wasn't very different in terms of time in bed, but I didn't have any more pain. My face is returning to it's normal shape. Boy was I puffy for a while there.

Today we made it to the hospital for my final blood draw and then we did a second errand (!) and went to my gynecologist's office and got me my prescriptions for the next couple of weeks. Big day.

We're trying to wrap things up here in Berlin because next weekend we're escaping to the French countryside where our generous and loving friends are going to take us in and let us recuperate in their hammock. Some time in the quiet green of rural SW France with friends and a happy baby is just what the patient needs and we are so grateful to be able to go. Night train to paradise for two, please.

In about a month we have to see all the doctors again, so we'll be in Berlin again for the first couple of weeks of June. Once that's dealt with we're going to spend a few days in the German countryside with our good friends whose farm we sat last summer. Some time with goats and both kinds of kids running around, not to mention farm fresh veggies and eggs... mmmm. And then it's off to Zurich for a two month house sit in one of our favorite places.

So many wonderful things to look forward to. I can't wait to have the energy to enjoy it all. Soon... I'm gonna feel better soon.


An aside, this clip really speaks to me but I'd be hard pressed to tell you exactly why. If I figure it out, I'll let you know. But it made me laugh and feel right.

Not a Gout Attack!

Mysterious knee pain remains a mystery. I have had rather unusually low levels of uric acid in my blood over the past few weeks - which makes sense considering my diet. So my befuddled doctor is still befuddled. He doesn't believe it is a withdrawal symptom from the fortecortin, which seems like the obvious thing to me. I haven't had any more knee pain, so there's that. In any case, he's taking me off that stuff, ramping down over the end of the week and hopefully no more problems. He finally noticed that my face is all puffy, something that started right after the final chemo treatment over 2 weeks ago. He was a bit concerned about it, thinks it's water retention (adema), but said it could be a minor allergic reaction to fortecortin. I'll be glad to be off this stuff.

Just to make sure I'm still part medication, he added 600mg of ibuprofen three times per day AND a synthetic morphine-like opiate twice a day. Five pills for breakfast, three for lunch, and five for dinner. Knee pain will probably not be a problem again. It's all supposed to be helping with my inflammation pains, too, but it still hurts to go to the bathroom. Maybe a little less than before. 

But the bottom line right now is that I feel pretty good. I feel like my body needs a lot of work and care, but knowing I just have one more radiation on Friday and after that can focus completely on recovering from treatment makes it feel like things are only going to get better. Talk about a treatment that feels worse than the disease. 

The sun is out, the trees are green, I have the energy to go walking about in the lovely warm weather, what more could I possibly want in life?

Gout Attack!

Okay, I haven't had a confirmation that it was an actual attack of gout, but that is what my doctor is calling it. This morning before 6am I woke up with awful, tear-inducing pain in my knees. I had been one pill short the day before and had saved the last for this morning (before my return to the hospital and all the meds I want), but apparently taking two fortecortin (cortico-steriods) instead of three yesterday was a big mistake. I took that third one in the morning, knowing I'd need it, but it was too little, too late.

We thought perhaps it was withdrawal symptoms, seeing as I've been on this crap for three or four weeks now. But the doctor was not convinced. He thinks gout. He thinks it will be very interesting if it is gout. He asked me if I have been eating a lot of meat. Riiiight. He's giving me more of this mellow morphine to take as a pain killer against the devastatingly painful bathroom experiences I'm having. Plus I'll take ibuprofen. All I want is to stop with the pills, but we're adding more this week in an effort to help me suffer just a little less.

The doctor is also happy to tell me that besides the pain of the morning, if it's gout they'll be able to continue to treat the symptoms and after radiation is all over and my body recovers, I'll be just fine. My poor body.

Just another reminder of how bad it has to get for the rest of my body before the cancer cells just up and die. The cancer cells are the vulnerable ones, but they're not the only vulnerable ones. I just have to suck it up and suffer, knowing that the cancer cells (if there really are any left at this point) are suffering way worse than I am. Yeah.

Had the final CyberKnife experience today. They loaded me up with mellow morphines and some pain killers, but it still hurt getting gauzed again. The doc who did it this time was like, 'I can handle your screams, so if you want me to just continue and do it fast, I will.' I told her to go for it, and no I didn't exactly scream. But I squeezed the nurses hands very tightly.

Then it was floaty-time in the music and colors and I felt good afterwards, all loopy and sedated.

Of course, I was wrong about this being my absolute last treatment. I assumed that CyberKnife was the last step, but it turns out I still have three more normal radiation sessions this week. I stay in the hospital tonight (last overnight!), get radiated tomorrow, go home, then come back for day visits on Weds and Fri. And THEN I will actually be done with treatment. Let the healing and recovery begin.

Radiation treatment doesn't exactly stop when the sessions stop. I'll still be radioactive or something for another 6 weeks after Friday. Not that I pose a threat to others. But we'll come back for testing again after 6 weeks to have a look and see how everything is doing. Maybe an MRI, gynecological exam, Pap smear. Gotta keep looking.

Right now I'm ecstatic with the knowledge that I won't have to get stuffed full of gauze again. The worst is over. There's no more worst. No more terrible or bad, even. Just pain management and then the inevitable ramping down from something like 15 pills a day to none. My oh my.