Bye Bye 2017!

One year ago we got a puppy. Her name is Lumin and she's adorable. She is completely attached to us and takes us for lots of walks every day. She acts as the resident cuddler, microbiome invigorator, stress-reduzierten dog, and mailman alert. She loves the mailman. He gives her treats, so she goes bonkers if he just drops the mail in the box without ringing the doorbell. We knew that a little babydog would give us an outlet for some of our feelings and needs. And we will probably never again have as much time, energy, and flexibility as she has demanded of us. This was our time to get a puppy. 

All the things I said I'd never do with my dog have happened. She wears clothes. She is lying next to me on the couch right now. We mix up fresh food for her. She doesn't like new people, but is a big fan of babies! I can't even admit to all of it. We are not the dog owners I thought we'd be and I love it anyway.

After bringing home a puppy in January, I started a yoga teacher training course in February. (Sorry Joshua!) In a few months I will take the final exam. My mom is a yoga teacher. I've done all kinds of yoga since before I was born, but this teacher training has forced me to go way deeper. I've learned to push myself. It's been good for me, personally, and I may even teach a class. In German, my friends. The teacher training has all been in German and so would the classes I'd teach. I can't believe it either.

Also in the category of learning and living in German, in March I started a job at the Engen Museum. I never feel like I have enough time in a museum. There's always way more art than I can appreciate before I'm exhausted and searching for the cafe. Now I have all the time in the world and I love it. There are permanent exhibitions on a local archeological site and the history of the town, and the rest is a contemporary art gallery. Regional and local artists have shows, I pour wine at openings, and I direct people to the closest Kaffee und Kuchen. Art and artists were a part of my childhood. It feels really good to be around art and artists again. 

One of those!

And in July we got ourselves a Kleingarten, or allotment garden. We'll grow veggies that we do not find in the shops, or that show up in small quantities, briefly, during a single season. We work outside, get dirty, and we've cajoled our friends into joining us for s'mores in the rain. 

It's a mess. The garden was neglected for years and the previous owners used it as a place to leave their trash. But the work (trash hauling) has paid off. Our friends have worked hard along side us, clearing, digging, hauling, and they've helped us with the weird unknowns of random trash disposal in Germany. Now we are focused on building a border so that Lumin doesn't whine about being tied up the entire time we're there. She can be as relentlessly noisy as an impatient toddler.

Yes, indeed. Kale.

What I've realized is that over the last year we have invested. We've taken on things that require day-to-day, month by month, and long term time commitments. Although I didn't spend the last few years describing my life this way, I think we were in a bit of a holding pattern. Well, we may have landed and settled in, we definitely made ourselves comfortable, but then we sat on that comfort. Maybe we were waiting, a little bit. 

Five years ago, during just this time of year, we were grasping for sense and making new plans because I had cancer. Five years.

Every year is a round of milestones with feelings bubbling up and memories coming around. But five years? It feels like an ending. I was told that once I hit the five year mark, my likelihood of getting cancer again would be the same as everyone else's. That's not exactly a lovely number, but it's better than the higher likelihood that I've been living with. I've been looking forward to getting to five years cancer-free and the wait is almost over. 

There's at least half a year to go, really. But each milestone, starting now, is a five-years-since milestone. I wonder if I'll stop counting at the end of 2018, one year from now.

Our patterns have changed. The longer narrative is more than a backdrop to the short stories that have punctuated the past few years. I look around and I cannot believe my luck. My New Year's wish for you is: whatever it is that you want to do, I hope that you find a way to do it now.

The Constant (Gardener): Joshua

Mini-Update, 3 Years Out

Joshua and I celebrate the same birthday in September. We were married in January of 2010, and six months later we left our life in LA and started traveling around Europe on our bikes. We were both at the terrible Pap smear in November of 2012, which lasted for hours and eventually lead to the first diagnosis. In December, between Christmas and New Year's, we were overwhelmed by the diagnosis. January was when we moved to Berlin and found my doctors. My surgery date was at the beginning of February.

March is when I started chemo and radiation. I had five chemo treatments but I don't know the dates or even remember when the last one was. Sometime at the beginning of May was my last radiation treatment. 

A few months of recovery, and then in November we got the good news that my first check-up came back cancer-free. 

All year long we can celebrate, or look back in anger or sadness or with the echoes of pain, physical and psychological. Most of the time we do not think about it. Our life is very good, right now.

But this year, in May, there was a milestone that we acknowledged with weight, quietly. Three years. I can't be sure why we use May as the marker. The end of treatment, we now know, is when the cancer was over, even if the confirmation didn't come until November. That's probably it. We never made a conscious decision to celebrate one date or another. In fact, there's no date - just the month of the year.

Over the past three years there have been all kinds of milestones, and a long, slow progression towards feeling good and strong again. Even though we did a lot (oh my goodness, that first year was crazy), each day and each week took everything out of me. I could feel myself functioning at a controlled pace. I don't know how many of you know about The Spoon Theory - if you don't, now you do. Every day I only had so much energy, and I had to ration it carefully to ensure that I didn't crash. Some days, and weeks, were much better than others. If I overdid it, my body revolted with a solid 8 hours of waves of abdominal cramping, vomiting, and drinking water just so I'd have something to throw up. 

In June of this year I overdid it - took on two or three more things within a week than advisable - and I was fine. Tired, but that was it. Just tired. Is it possible that things are that much better, after three years? It took this long to get to fine? I don't expect it to last. In fact, this week I have felt like doing nothing. I want me some Pokemon GO running on the table beside a jigsaw puzzle, to eat all meals out, and to treat every day like a vacation during which day drinking is no big deal. 

It's just another week, so that hasn't exactly been the routine. But I feel like I would rather not be present for the obligations and responsibilities and chores that daily life requires. I do not want to see people. I wish I would leave myself alone.

That feeling, like all the feelings I've had, will pass. I know what it's like to one day wake up with energy again, excited to go out into the world. That will happen. 

Healing takes time. Recovery takes energy. Things are still getting better. I made it to three years, more than halfway to the 5 year mark which will indicate that I am just as likely to get cancer again as anyone else. 

This Blog: In Order

We hat a lot of extra fun at the February check-up because it's been three years since surgery! A CT-scan, an overnight stay, a new hospital (Halwani got a new job!), aaaaand everything looks great. The CT was of my entire torso, to make sure they're not missing anything in my lungs. They're not missing anything. Everything is clear. Take a little break to have a dance party.

Here's a crazy idea: what if you could read this whole blog from start to finish, in chronological order, without having to click through and read bottom to top? I've been thinking about writing a book, a real memoir that includes all the blog stuff plus whatever else I've written and thought about being a cancer patient at 32 and everything that happens afterwards. This is not an original idea, but I'm hoping to be original about it.

But writing a book is hard! I'm working on it, I'm even paying other people to help me work on it, and one day I hope something worth reading will come of it.

In the meantime, the problem that spawned the book project still irks. If someone new comes to this blog and wants to read it all, in order, they're stuck with click, scroll, scroll-scroll-scroll, scroll-scroll, click, click, scroll, scroll-scroll-scroll... and on and on. I've now done that myself. I read through all of my own blog. The good news is that it's not that long and is totally worth reading. The bad news is that blogs are meant to be read as the posts are posted.

The magical internet produced a quick solution, though. On my first search for "turn a blog into an ebook", the top result was bloxp.com. It's brilliant and free and not very customizable, but there is a link to each post at the end of each chapter. So thank goodness for Sergio, who invented this simple tool. There are some minor problems. For example, not all of the photos are included. There's no simple reason for this to be the case, but Sergio knows now and he knows about a couple of other minor things. I couldn't get the .mobi file to open in the Kindle app - kind of a big one.

Mais! Ma! Aber! The simple version, a wee ebook version, of this blog is available as an .epub file, which you should be able to use in most e-readers, especially iBooks, and can be downloaded right

here.

The file cannot be previewed with Google Drive, but you should be able to download it.*


*If you have any problems with this, or want me to try again with the .mobi thing, please just write to me at ramona.marks at gmail.

Death and Living On

I know, such a melodramatic title.

The thing is, I lost a family member in the past few days and it happened fast. Three days ago I got an email announcing a diagnosis of brain cancer for an uncle who is mine by two marriages. He married into one family, the family of my grandma's second husband - also known as the only grandpa I remember. Complicated to describe, yes. Complicated addition to my life, no. 

He didn't live to experience the excessive trauma of cancer treatment. Instead, a couple of days after the first email, a blood clot found his brain and he went into a deep coma. One more day and the message was that the service was scheduled for... today. Fast. 

My heart aches for his immediate family. Even though I had only a handful of summers staying in his house, with his extremely smart and deadpan-humorous wife Rhoda, a couple of very clear memories put me into mourning with the rest of the family. 

Little me with my Grandma, Jay and Karen at their (and Rho and Herb's, Wendy and Ellen's) house.

He loved whales. He was a surgeon, a detailed, delicate, and powerful profession, and he cultivated a seemingly similar intricate knowledge of the lives of whales. He spoke of his time on a whale watching cruise with an engaged reverence and a child-like wonder, feelings I could share with him. Observing a sliver of a whale's life, so large and slow and contemplative - and whales peeking up at humans are curious and contemplative - put a profound weight, a steadying weight, into how Herb experienced being alive on this world.

I'm not a chess player. But Herb tried with me. I don't know what I was thinking about (probably boys) when the photo above was taken, but I do remember that Herb took the time, slowed me down, and tried. That may have been the only time I wasn't thinking about boys during that stage of my life. I was intimidated but not uncomfortable. 

Herb could have been intimidating. An older, distant-uncle-figure can easily be intimidating. But he wasn't. He had a dry, wry sense of humor that let you know that he was being playful. He had a slow, thoughtful look, often over a pair of glasses, like a grey whale rolling onto its side and eyeing your little boat on the surface of life, that said, 'yeeeeeessss, I'm listening.' 

And I can only hope that he knew what he was doing and where he was going over the last week of his life. If anyone can know, he would have. We will all follow him eventually, and I envy him his avoidance of cancer treatment, if not his abrupt, painful departure. He left a family that knew they were regarded with sincerity and loved for their honest selves. I miss all you in Toronto right now. 

At Rho and Herb's cottage, eating snacks with Grandpa Joe

Hold on to one another while you can, team. Don't be afraid to live.

Hope is a Battlefield

I'm going to start with a link to an article about the first woman who's given birth using a transplanted uterus, because that's what prompted me to come back to this blog. My first thought was that it was kind of strange, mixing and matching body parts to come up with a viable way to bear children. Of course, my second thought was, "I wonder if this is good news for me."

The thing that stands out, no matter what else I thought and felt while reading the article, is that the donated uterus came from a woman who was post-menopausal.

I'm post-menopausal. My body isn't producing the hormones that it did when I was fertile. It means I had hot flashes that woke me up in the night and drove me absolutely crazy. It means that my doctors recommended hormone replacement therapy (HRT), because being as young as I am, there are health risks associated with being post-menopausal. If I have a baby it will be a purely medical process, start to finish.

There are many women, even a number that I know personally, who used some kind of hormone therapy or in-vitro fertilization (IVF) in order to get pregnant and were super happy with the results. Or were devastatingly disappointed. I don't know anyone who has gone through chemo and radiation and then tried those things, but the prognosis for fertility is grim.

Getting pregnant at all is highly unlikely. We've just got 5 frozen eggs, so the most likely scenario is that we try once and it fails. Pregnancy with IVF takes 20 eggs, on average. If we get so lucky, the chance of a miscarriage is very high, especially late term. The baby would be born prematurely because my uterus is not as stretchy as it was before pelvic radiation, despite all efforts to shield my uterus during treatment. We would have to live close to our doctor and the hospital. In the case of a late term miscarriage, it would have to be done by c-section.

We talked a lot about this before I started treatment, and that's why we've got five frozen eggs in a cryogenic freezer somewhere in Berlin. But we also knew that facing cancer and treatment at the same time as facing the possibility of not having children was too much. We needed to know that we could deal with the questions around having children at a later time. We needed a reason to hope.

Regardless of the baby-making, HRT is a good idea. It's been over two years since I last had my period. It's been weird. I don't think about it often, because like most women I had my period once every four weeks, not constantly. But I felt different. Every once in a while I'd get moody or unreasonably frustrated or prone to tears and I'd think, "oh, maybe I'm getting back to normal!"

Joshua thinks HRT has brought me back to normal. Since I've started taking hormones, he's noticed that I'm more on my game. I notice things that I was either ignoring or oblivious to for the past couple of years. In not so nice terms, I'm sweating the small stuff once again. When I nit pick at him he says, 'there's my Ramona!' and laughs. Could be I was completely zoomed out during and after treatment, as a coping mechanism. Could be my hormone levels were having an effect. Most likely it's a combination of the two.

Joshua and I are both afraid of pregnancy. We're scared that it'll be temporary, that my body won't be able to hold a baby for long enough. We both believe we shouldn't make decisions from a place of fear, but this is a tough one. Medical procedures to pregnancy, potential of failure, potential of more emotional and physical damage. We could just keep living the way we have been and let go of the idea of having a baby that is part me and part Joshua.

What I know is that I don't need to have a baby to feel complete or satisfied. Before all this cancer business, I would not have considered IVF or fertility treatments - we would have tried and if it didn't work we would have mourned and moved on. Of course, we never thought we'd have a problem. Joshua and I are mourning the loss of this experience: being parents of children made up of our genes, that look like us and inherit random features from us to form a unique but familiar combination. We both wanted that experience and we are facing the likelihood that it won't happen. I know and love people who would have been devastated to be in this position. They would have tried everything. If they didn't try everything, they would regret not having pushed a little farther until they knew there was simply no possibility.

Beyond hope and fear and uncertainty is my need to have some choice in all this. Getting cancer and having treatment is completely disruptive in every way. Life feels out of control and all decisions are made based on a very present threat and a bit of uncertain future. We've been out of control. I lost all control over my body. I took super poisonous medications. I was cut up, permanently physically changed with permanent reminders - not by choice, but by necessity.

At this stage, being able to make a decision, have any choice at all, is like rain in a time of drought. Knowing the risks to me, to a baby, and to Joshua, as we would suffer through a very uncomfortable and stressful pregnancy, I want to choose rather than see what happens if we try harder. Having a child is a very selfish and personal wish, which is not a criticism. But if we push so hard for what we want and then we have a child that we knew would have health problems from the beginning, that probably wouldn't even make it... It sounds crazy to me and to Joshua. I know that's not how everyone would feel, but it's how we feel. Pregnancy always comes with risks, but this is an outstanding situation in which we would be risking a baby's life, comfort, and happiness, my life, and further emotional and physical trauma. How badly do we want to have a baby? Not that badly.

I wanted to write about hope. That article made me hopeful again, for a while. It made me think that if a post-menopausal uterus could be transplanted into another woman's body and then carry a baby to term, maybe my uterus, with the same kind of medical support, could do the same. It's not the same, but it gave me hope. And while I have hope, I'm afraid.

My doctor says that his patients all believe in miracles otherwise they wouldn't be there and they wouldn't have experienced miracles for themselves. (He doesn't say this to brag, but to make the point that we don't know unless we try. He is not pressuring us to make the decision one way or another, and he doesn't tell us that it's an overwhelmingly bad idea to try to have a baby.) But when he said we would aim for 7 months of pregnancy and I rhetorically asked, 'So, it would basically be a miracle if I had a baby?' his response was, 'Yes, but we have miracles here all the time.'

We may still have children. We've always talked about adoption, even before all this. But that's a different conversation and we're still a couple of years away from being eligible to adopt. Having had cancer, I'm at a higher risk of having it again until 5 years out. Then I'm just as likely as anyone else to be diagnosed. So we will start to learn what it would take. The thought of adopting is exciting. We want to care for a child that would otherwise be without a family, and to build a family and home through choice and an attitude of generosity. But that's another blog post.

There are a couple of other maybes. Maybe we could travel to a country where surrogacy is legal, pay a fortune, and ask someone else to have a baby for us. Maybe a uterus transplant program will start nearby and we'll decide that a bunch of surgeries and medical pregnancy sound like a good idea after all. Ugh. Grieving it out and moving on sounds more appealing, and that is telling. Also telling is that with all the potential outcomes of IVF, the one that sounds most reasonable is for it not to work, for us to no longer have any more options. I think we know what the right choice is for us.

Hope has sustained us for a long time, but we're starting to feel the strain of being hopeful about something so heavy. I'm tirelessly optimistic in most situations, but not foolishly hopeful when I know the odds. If I'd started my period again, if I was growing my own endometrium, if my body wasn't sending very clear 'too-late-for-babies' messages, maybe we'd feel differently.

We've pondered and measured and cried and tested out how it feels to tell other people what we've been thinking and then cried with those people. It's getting easier. The tears don't come as readily. Moving on doesn't feel impossible and we are enjoying the things we can be grateful for - to the absolute fullest. Like all the people we love and who love us and have supported us through all this crazy. Like each other and the life we have together.

A Year Ago

The sun is finally pushing us into the shade. The heat of it is true; it sinks into our bones, even though the last two hours have been overcast, threatening a change for the worse. The laundry will dry before the thunderstorms move in, and the idea of predicted thunderstorms is less believable after a few minutes under the burning sun and blue sky, dotted with just a few puffy, white clouds.

Our space here has been cold with winter stored in stone, but today the door is open and the stones soak up the warmth of the sunlight. Another new home where we have our desks for work and our bedroom for sleep. Once in a while one of us lies on the couch and reads a book, because it's a luxury and it feels like one. 

Today after lunch I walked around the garden and collected flowers. A small green-brown bud vase is full of pure orange California poppies. Another has a single, tall red poppy that is already losing petals. A white asymmetrical vase holds a long, tall stalk of a back-garden bush whose white flowers have many petals each and grow in bunches atop long, dark green leaves. 

We were here one year ago and it was a different life. Spring was late. Some flowers were venturing forth, but just the green of fresh leaves on the trees was new and satisfying. Walking on tiny, poorly maintained roads was a luxury. Last year it was a time when we could breathe again, gladly released from a few months of brutal treatment in a cold, hard city. We relished the quiet and the stillness and the rainy days when staying inside all day meant much-needed quiet and a bit of extra sleep. We both needed to sleep. 

I'm not even surprised that it feels like a lifetime ago at the same time as it feels close. Just one year?

Check-up number 4, a year after completing all treatment, was the reverse train trip of last year's SW France recovery trip. And Berlin in May this year was hot and green, with crowds of young, hip picnickers cycling to spots along the canals and lining up for outdoor seating at fantastic, exotic restaurants. Korean food. Vietnamese food. Did I mention that Berlin has a large population of people from former friends of the Soviet Union? We actually benefitted from that this time, going out for meals and enjoying the warmth. What a difference a shorter winter makes.

Dr. Halwani didn't bother with biopsies. Everything looks fine. The big deal fertility doctor also said there was no sign of recurrence. He'll be sending a letter next week with his recommendations vis-a-vis hormone therapy and the possibility of pregnancy. Sounds complicated, way more complicated than it should be. But we're supposed to think about it, mull it over, until September or so. I think we're mulling.

In the meantime, we've been welcomed into the family of our friends, newborn baby and 2-year-old included. And we're grateful. Grateful to be here, now, with this warm and growing family. Grateful that we can go for bike rides together, that we can walk and run on poorly maintained roads through fields and forests exploding with green life. Grateful for bright flowers, the variety of which bloom in overlapping waves, keeping the bees and bugs happy and serving as a reminder of the self-renewing beauty of life, despite deep, dark, cold winters.

Another Good News Update

Yet another set of biopsies has come and gone and I'm still given the all-clear. In fact, the next steps are to get me pregnant, if that's even possible. It still feels so soon. It hasn't been a year since my last treatment of any kind. Rushing it feels like a bad idea. But I haven't had my period in over a year, so hormone therapy is on the horizon anyway. And the fertility doctor happens to be on vacation when I'm next in Berlin (for biopsies) - sigh. It could take some time for my body to get back to something like normal, and then it's maybe, kind of possible that I could get pregnant. But it seems like a long shot, no matter how you slice it. I'm better adjusted to the prospect than I was a year ago, but it's still heartbreaking.

I've kind of got the edema under control. Edema is the last thing side effect remaining. I've found that the biggest trouble-makers are nights when I don't stay in bed for at least 8 hours (and preferably 9 or even 10) and hot showers. Ugh. I love hot showers. But I can count on them to make the edema flair up so I have to kind of take it easy. I wear compression stockings every day and I'm still having weekly lymph drainage physical therapy massage, which is very nice and I think it really helps. After a couple more sessions I'm taking a break for a few months to see how I do.

Spring feels good.

Staying Alive

It's been just over a year since I received the diagnosis, and nearly exactly a year since surgery. I feel almost normal, physically. There are reminders, like lymphedema. I'm frustrated by the guilt I saddle myself with about drinking alcohol or eating sugar, and somewhere deep down I know that I am still just barely out of the physical and psychological trauma of cancer treatments. But what can you do? Keep moving forward. I've got another check-up next week. I've hardly thought beyond the logistics of a quick trip to Berlin. No big deal? I guess we'll find out soon.

A confluence of music and curiosity brought me to an article about surviving cancer treatment and moving on. The choices people make when they face down the threat of a slow, painful, inevitable death, and then the slow, painful treatment and recovery. What then? The cliches hold. People can do amazing things, from enjoying their day-to-day lives completely to learning to fly airplanes.

Then the Guardian posted this article, also about cancer and survival. I like this one in particular because it helps remind me that taking care of myself is important, but it's not the whole story. If a guy can be in peak physical shape and still get cancer three times, I guess I don't have to guilt trip myself about relaxing with my husband over a beer after a 2 hour walk with the dog. As much as I wish I could save myself through action, I may have no control whatsoever.

Happy music anyone?

A Humorous Touch

A couple of really sweet stories have come my way recently about what others have done for cancer patients in order to help them get through treatment. They should be shared widely, but I warn you that they may also make you cry. Good tears, hopefully.


First a story (links to a non-video version via Buzzfeed, in case you don't wanna watch a video right now) about a man who dressed in a tutu and took photos to make his wife laugh. He says, 'This all sucks, you know, and it's stupid that it's happening,' in reference to cancer. My sentiments exactly.


Next, the story of a foundation that wanted to help cancer patients forget about it all, even if only for a moment.

In Recent News: Avoiding Cancer

I saw an Atlantic article come through the ol'Facebook newsfeed and it reminded me that I promised someone I'd tell you all about Mesothelioma. What?

First, the article, which is about avoiding gynecological cancers that are linked to HPV. There's even a link between other cancers and HPV. If you can get the HPV vaccine, do it. Why? Because this little virus is very good at mutating cells in ways that eventually lead to cancer. Seriously. There are a few dangerous things about HPV. First of all everyone seems to have some strain of it at some point in their life and there's no cure. Second, it shows no symptoms in men most of the time so dudes won't even know they have it and are passing it on to women. And finally: cell mutation, dysplasia, cancer. Just get vaccinated and vaccinate your kids. Read the articles linked above for more details.

And then there's Mesothelioma. This is another avoidable cancer, which is why the HPV vaccine article reminded me of it. Mesothelioma is a cancer of the mesothelium, or thin lining of internal organs of the abdomen. Mesothelioma is the cancer that is caused by exposure to asbestos. I know that plenty of you are into DIY home improvement projects. Before you embark on those projects, learn about what asbestos is used in and don't breathe home improvement dust. No amount of exposure is okay.

You probably know that asbestos is bad for you and you think of it in relation to asbestos insulation. However, asbestos has been used in products from toasters to hair dryers to glue to home siding to paint. It's a naturally occurring rock that can be spun into fibrous insulation or used to make lightweight siding or planter boxes.

You also probably think that asbestos is no longer an issue in these modern times when we know about how bad it is. Sadly, so many houses were built before the health risks of asbestos were discovered that we're still seeing a lot of people being exposed. And even though asbestos is so obviously bad, it is not banned in the US and is still used in many applications.

Asbestos siding on homes may not be an issue if it's left alone. Asbestos used in glues that keep tiles on walls may not cause you any harm while the tiles stay glued to the wall. It turns out that all of us are exposed to asbestos at some point during our lives. The problems come if you breath in asbestos dust. The dust particles get lodged in the lungs and can cause inflammation, infection, and cell mutations that lead to cancer.

If you are remodeling a house, consider an asbestos inspection before you do any drilling, smashing, or DIY work. When homes are remodeled, asbestos gets disturbed and some dust is swirled up into the air. If you do any remodeling or work on your house at all, interior or exterior, use caution and consider an asbestos inspection beforehand.

The most likely Mesothelioma patients are people who have worked in construction, fire rescue, or navy workers; these are the people that have come into contact with asbestos on a regular basis for many years. Emergency workers and clean-up crews who were exposed to the rubble of the World Trade Center are at especially high risk. Before the risks were understood, construction workers used to come home covered in asbestos dust, and family members often contracted Mesothelioma, lung cancer, or suffered from other respiratory problems. These days, safety requirements have been increased to help reduce exposure. But most people don't realize how prevalent asbestos is.

Mesothelioma doesn't necessarily present until 10 to 40 years after exposure. And there is no cure.

The Mesothelioma Cancer Alliance contacted me and asked if I would write a blog post about this completely preventable cancer. It's slightly off-topic, but I said I'd be happy to spread the word. Just be careful, guys, and know the risks so you can avoid exposure to asbestos.


References:

http://www.cancer.gov/cancertopics/factsheet/Risk/asbestos
http://www2.epa.gov/asbestos
http://www.mesothelioma.com

The News is Good

Woo hoo! Five biopsies and all cancer-free. Thank goodness. Yay! is the understatement of the day - yaaaaaay!

A Nothing Update

There's no news because there's no news. I went to Berlin for an MRI, which takes a week to be processed. I guess. Dr. Halwani (surgeon) wanted to see me after, so I got an appointment with him for Nov 12th. Then we'll do a biopsy, I assume. Meanwhile, Berlin looked like this:

Maybe you remember this park, maybe you don't. I definitely posted pictures of it covered in snow and then again all green with spring growth. First time in a long time that I've seen a place during more than two seasons.

Strangely, I was looking forward to going back. You'd think I'd be pretty wary, considering the associations I have with the city. But it seems my memory is already changing at the feelings level. A clever tactic, considering that I do not want to go back to the way I actually felt throughout treatment, even in my mind. Maybe it makes sense that I feel nostalgia, but intellectually it strikes me as strange. Thanks, brain.

Updates later this month.

To The End of Fall and Back

Cancer is weird. For many people, the symptoms are strange and untraceable at first, and then there's a death sentence. For others, there are almost no symptoms but the process of treatment is like dying a little bit. I'm one of the others. My time in Berlin during treatment was spent slowly dying, then I was allowed to come back to life and heal again.

The relief of life after the specter of death is immeasurable. It barely registers when you're drugged, exhausted beyond comprehension, but still it does register as relief.

For the first couple months after my last radiation treatment in early May, I was just glad to be improving and getting stronger again. Despite pain and troubles, things keep getting better. Now I'm almost entirely normal. Anything I suffer from is not particular to people with cancer, even if cancer treatment was the cause. Acid reflux? Everybody gets that from time to time. Edema? Not even as bad as what some of my friends with kids have described about their pregnancies. So I'm fine.

Now the anxiety. The cancer cells that were in me got zapped hard - trust me, I was there. I probably don't have to be afraid of cancer coming back. But I have to get those tests done, and now the tests are looming. I cannot help but consider what will happen if the biopsy comes back positive for more cancer cells that are not fried to a crisp. I guess that's part of the deal. Spiraling back towards near-death? I stumbled upon a blog called Teaching Cancer to Cry, kept by a man who has terminal cancer and is no longer having treatment. It is terrifying and illuminating. I want to look away but I can't.

I crave an escape from the waiting. The usual routes are not really working. Work has been quiet. Wine gives me bad acid reflux, a reminder. I have a lot of time to think. It should be nice. Instead it's haunted.

I am anxiously awaiting the tests and the results and it will be a relief when that part is in motion. But I only have the MRI appointment lined up, because I don't live in the city with my health care providers. It's been frustrating. They want to wait to make further appointments until after the MRI, but I just want to make one trip to Berlin and get it all done quickly. And behind the tame frustrations of not getting the easy appointments that work best for me is the reality of what these appointments are for. I can't just skip it and do it later, actually, it's critical that this happens now.

Travel is a worthy distraction, and it has been good to be on the road. We took the train from Voss to Oslo, on a surprisingly old and wobbly set of tracks, considering the wealth of the country. The scenery was spectacular. We went up and over and as we gained altitude early fall sped past and turned to late fall, almost winter.

As we went over the pass and headed downhill again we went back in time. The trees had leaves again, they were red, they were yellow, and then the grass was green again.

 

Back at sea level, fall was just beginning.

Fall. Last fall I had normal problems. I was working through a tentative plan to settle down and have kids, without an idea of where that might happen or whether we'd be able to afford it. There were early signs of a problem which I did not understand the proportions of and maybe I should have taken action sooner. I just hope this winter is better than the last one. That shouldn't be too hard.

PROBLEMS

Today is the three-months-after-last-radiation-treatment celebration day! Yee haw! It feels so far away and yet it feels like time is crawling. Yes, I still have some problems. But they are minor. THEY'RE MINOR. And of course they also feel like they run my life. Big, deep sigh.

Edema has come. Edema is the pooling (swelling?) of fluids (liquid? water?). For me, it's mostly a left leg thing. The surgeon warned me that this might be an issue after he took out all those lymph nodes. He was right. It's funny that it's primarily just one leg, but maybe it's because he took one more lymph node out on that side. One too many? Perhaps. In any case, it doesn't really bother me. But I'm aware of it most of the time.

If I go for walks and keep moving, the swelling is not so bad. But my job is a sit-at-computer job, and sitting is not so good. Once a week (or so) I have physical therapy for one hour. Lymph drainage (Lymphdrainage, in German) is a targeted kind of massage that encourages your lymph system to keep those fluids moving. It feels nice and I think it helps. We've been house sitting in Zürich, Switzerland, but my insurance is in Germany, so I take a train over the border for my lymphdrainage.

rainbow over the Schaffhausen tower

I also wear compression stockings (Kompressionsstrümpfe), which also seem to help. However, when I wear them the fluid pools elsewhere and I don't like it any better. The physical therapist says perhaps what I need are Kompressionsstrumfhosen, or compression tights. She asked if I noticed it in my butt at all and I told her that no, I do not notice whether my butt is swollen or not. Surprise! But I don't think it is. I told her my pants fit the same as usual.

Did I mention that it's in the low 30s C (90s F) every day right now? Yeah, tights sound like a great idea and all but no. Maybe once it cools off? I asked my physical therapist how long it might take for things to return to normal, like, what is typical? She said I'd probably do 10 sessions at a time and then take a month or two off, then do 10 sessions again. And it's usually a year or two before the body compensates more accurately for the change. Something to look forward to.

The edema doesn't bother me most of the time, but it does start to bother me if I don't think about it all the time and take lots of breaks to get up and walk around the apartment. You see how that works?

Then I have throat tightness. This is attributed to and is a common symptom of acid reflux. I have no other acid reflux symptoms, no heartburn. The tightness comes and goes, so it's not terrible. But it's a sign that something is not right. For this, I have Pantoprazol. It's a proton pump inhibitor (PPI) commonly prescribed for people with chronic acid reflux or GERD (gastroesophageal reflux disease, something I happen to know a lot about, unfortunately). I don't think Pantoprazol is really working for me because I still get the throat tightness, even though I've been taking this stuff for two months or so. My doctor said to just stick it out. The other doctor said to only wait 3 or 4 weeks and then consider antibiotics. Eff that, is what I said.

I go back to Berlin in early September for the 3 month (since my last) biopsy. The last biopsy "looked great" according to the surgeon, so that's nice.

The compression stockings are actually pretty rad. I wore them hiking in the Alps. Wait, what!? Yeah, I haven't been holding back actually. Our very good friends took us on a little B&B/spa/hiking adventure to Vals. It was so beautiful.

Alpine goats and me

the Alpine hiking team. thanks guys.

got pretty steep at times

I'm pretty proud of that adventure, so I'm in all the pictures posted here. I did that just a couple months after finishing cancer treatment. To think that only three months ago I could hardly do anything but lie around in bed all day long. To those of you struggling through treatment right now, this is for you: it gets better.

We had three days of hiking in the Alps, with a 6 hour hike on the final day. Pretty burly. Leading up to that my sister and I did a four day bicycle tour, doing about 30kms per day.

Bottom line: I'm getting much better. There are days when I want to cry because I feel like my body is broken and doing things it never used to do. I'm learning my body all over again and it's hard. We used to get along so well, my body and I. Now... problems that I can't seem to fix by just willing them to get better.

And I have a love-hate relationship with all the cute shops selling baby and children's clothing. Walked by a maternity wear shop and wanted to cry about it. I don't know if we'll be able to have kids at all, and even considering kids at this point is crazy. The future feels incredibly uncertain except for the very near future; until 6 months after the last chemo treatment, getting pregnant would be a bad idea. So it makes no sense to think about any of it, really. It's a short loop from "I want babies" to "I might not be able to have babies" to "I certainly can't do anything about it for a few more months" to "why am I even thinking about this right now?"

I continue to be overwhelmingly grateful to Joshua for being... well, himself. He recently created a Mac application for tracking time zones. It's a simple idea and perfect execution, so if you like the idea of having more than one clock at the top of your screen, please check it out. We'd both really appreciate it.

Thanks for continuing to check-in here, too. It's helping.

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