Thursday, December 12, 2013

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.

Saturday, November 23, 2013

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


Monday, November 18, 2013

The News is Good

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


Saturday, November 2, 2013

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.

Thursday, October 17, 2013

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.


Friday, July 26, 2013

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.

Wednesday, June 26, 2013

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.

Sunday, June 23, 2013

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

Friday, June 14, 2013

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.


Sunday, May 26, 2013

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)

Monday, May 13, 2013

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.


Wednesday, May 8, 2013

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?

Monday, May 6, 2013

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.

Wednesday, May 1, 2013

Le CyberKnife

In general, radiation has been, you know, cool. I have had very few side effects until the last week and the actual administration of the radiation is totally painless. I wander in without pants and wearing plastic booties over my socks, lie down on the table with it's knee pillow and foot and head rests, and the radiology ladies roll and nudge me until my x-marks-the-spot stickers line up with the lasers coming from the ceiling and walls. Then into the tube I go for a cool and relaxing semi-nap. I've been imagining that the clacking from the machine is a handful of horses running around and stomping out bulging eyed cancer cells while being kept away from my uterus by wooden fences.

This week radiation got really good. The CyberKnife is totally as radical as you could ever imagine. It is a gigantic robot arm that reminds me of Gypsy from MST3K (but all white, at least eight feet tall, and bulky - pretty good image here). The doctors are all very pleased with the planning CT and MRI matching and they seem to be kind of excited to be able to justify the CyberKnife. The justification, for the insurance company, is 'compassionate use'. Because why irradiate my whole vagina when they can use this super precision machine and spare the healthy tissue as much as possible? The alternative, as I think I wrote before, would be brachytherapy - pen-style, focused radiation that can really only point in one direction.

Ah but the CyberKnife and it's joints and tubes - marvel of engineering and much like a giant dog sniffing around to get at you from all the angles. The treatment part lasted 50 minutes, with the giant arm and nose moving around me in a kind of full-circle, two times. It moves, making a very soft machine winding noise, points at my crotch, then stops for a few moments. Then adjusts again for another angle, pauses, moves on. When it started, I had the urge to giggle a lot.

The room itself is in a bunker under the hospital, which had to be specially made to keep the high radiation from wandering around. There's a large circular recess in the ceiling lined with multi-color LEDs that fade from bright pink to red to yellow to green to blue to purple - just like in a cheesy hot tub. And to top it all off they pipe in some very synth piano/harp/clarinet/guitar plinking music. My favorite song was the one with the birds chirping in the background. They said I can bring my own music next time if I'd like, but somehow I don't think the mood could really get any better.

The big downside is the vaginal packing - ugh. Cream soaked gauze is still abrasive and this being the third time in a week, it was pretty painful. Dr. Marnitz asked if I wanted to stop and use an analgesic, but I asked if we were past halfway and she said yes - so I said we should just get through it. Friday, next session, she'll bring something to numb me a bit. Still feeling raw and sore the day after. The radiation dries things out anyway, so it's no surprise that almost three meters of gauze being rubbed along the vaginal wall is uncomfortable.

And of course I had to go pee halfway through. I thought they were almost done, because they came in to look at something and it seemed like the CyberKnife had made a full rotation. If I'd known it was only halfway I might have said something sooner. When it really was finished I was like, 'Ich muss jetzt nach toilette gehen. Jetzt." And they were like, 'do you want to put your pants on?' And I said no no no, just get me to the bathroom.

It was funny. Kind of. They told me I should have raised my hand, as instructed, and they would have given me a break. Yeah, okay, next time that is absolutely what I will do. I just thought about all the gauze and the three adjustments they made while they lined me up just right and I was like, 'I can make it through.' Poor reasoning. Never make decisions when you have to go pee - just go pee.

Today I really do feel better than I have in about 6 weeks. Still on many anti-nausea meds, but they are working and I am eating. I have the energy to think, listen, and even hold a conversation for longer than 2 minutes today. My sense of humor may be coming back. One normal radiation tomorrow and two more CyberKnifings on Friday and Monday. Can you believe it? I could cry happy tears, I'm so relieved.






Tuesday, April 30, 2013

Closer to Worth-My-Weight in Gold


I was so excited to write about this last week, but slept through most of the days. I had to sign a waiver saying I was cool with the introduction of three gold splinters into my vagina. That's right. Bling. Effing. Bling.

My favorite lady-radiologist-in-charge, Dr. Marnitz, handled things. The ladies in radiology were all very kind and it was almost painless. She had a phone call with Dr. Halwani, my favorite surgeon, just before she installed the gold markers. No matter what, I'm more comfortable with a vagina owner dealing with mine. She gave me the rundown on what it looks like in there now and it sounds like Halwani did a great job. It's funny because the way she described things is just how I imagine it to be in me now.

The gold bits are markers for the planning and correct administration of the final phase of boost radiation with the CyberKnife. The gold, being non-magnetic, won't go flying out during MRIs, but makes a perfect little line in the x-rays, CT scans, MRIs, all the scans. They mark the boundaries of where there may still be a few cancer cells which everyone wants to blast out of existence. Super idea, as far as I'm concerned.

The CyberKnife is a very focused beam of radiation that can be tuned to more precise locations than regular radiation and brachytherapy. Brachytherapy is the normal way that they add a boost of localized radiation, and it's done with a kind of pen that beams right at the target. But getting that to work for vaginal cancer is a bit tricky, so CyberKnife it is. The real benefit is that you can keep irradiating the cancer cells while sparing the surrounding healthy tissue. To do that for vaginal cancer, they also have to pack me full of cream-soaked gauze, which is not the most pleasant experience. Apparently I can fit about two and a half meters of gauze, which is not like the size of a baby at all - the gauge for maximum vaginal stretching in my mind. I just tell myself it's not childbirth and it doesn't last long anyway. 

The only further side effects which have been going on over the past week are the broken glass eliminations. Inflammation, very normal, in my nether bits. Such a bummer. But the more fluids I drink, the less painful it is. 

Last week I had to stay in the hospital from Tues to Saturday... ugh. It wasn't all bad, and my roommate was a non-smoker who didn't watch TV and liked the window open all the time. We were compatible. But I lost a little more weight, even though my dad brought in food often and I ate as much as I could. This week was a banana and peanut butter kind of week, as well as a cheerios with milk and bananas kind of week. We did have our Sunday cake like good Germans. And the 40% fat cream cheese on crackers is also a good snack. Protein raspberry yogurt smoothies, fries, and veggie burgers are also on the menu - there's a veggie burger restaurant just down the street and that food is good. But I guess I have to give ice cream a try again. I do feel better when I stay well-fed.

When I got home on Saturday I was exhausted. But after a bit of a sleep, Joshua made me some fried green beans with sesame seeds and soy sauce and some noodles and it was maybe the best meal I'd ever eaten. At least, the best since the perfect eggs and toast he made the morning I'd left for the hospital. 

The schedule is pretty light going forward. Today, Tuesday, CyberKnife and a night in the hospital (for insurance purposes - effects of treatment shouldn't be significant or different from everything else I've gone through, so say the docs). Weds home and no treatment. Thurs regular pelvic radiation. Friday CyberKnife and stay the night. And one final CyberKnife next Monday with a night in the hospital. So... home next Tuesday and focus on recovery from there on out. Phew!

My dad brought all kinds of treats, from dried mango to salt and vinegar potato chips, and a couple bags of real black beans. Black beans here are a different variety and it's just not the same, so this black bean haul is like... well... gold. 

Really, truly, only one more week now.

Monday, April 29, 2013

So Tired

They say exhaustion and fatigue are the most common "side" effects of both chemo and radiation, and Joshua and I planned to be prepared for that. I never knew what tired was until this. My dad brought a deck of cards to the hospital thinking maybe we'd play and just looking at them gave me the feeling of being overwhelmed by too much to think about. It's a brain tired where there's no room for anything; I haven't been able to do much reading, movie watching, knitting, or anything else that typically works as a leisure activity because just thinking about it makes me tired. Lying in bed, listening to nothing, doing nothing, and thinking about nothing is perfectly satisfying.

This week it's been nice to listen to some music, which was also generally overwhelming over the past few weeks. Some soft quiet music was good, but it didn't take much for me to feel jarred and vibrated in the wrong ways.

I'm coming back. I still feel pooped when I think about thinking, but it's going to get better from here on out.

Friday, April 26, 2013

home stretch





I can hardly believe it myself, but this is almost over. And last week this view was all grey! Spring, final chemo, etc... big relief.

Another source of relief, for Joshua as well as me, has been the presence of my dad this week. A bit of fresh energy and a pair of free hands goes a long way around here.

Over the next week and a half I get radiation and the CyberKnife radiation boost. I want to tell them that they already got all the cancer cells, but that is not really my job. I will say this, though: never chemo ever again.

Never say never? Whatever. Never, never, ever again never.

I felt great when I was diagnosed, you know? Healthy, happy, energetic, and in control. And the treatment made me so ill... it is the best of what we know is most likely to work. But not for much longer. I'm looking at you protein geneticists who are learning to turn off the cell mutations that allow cancer cells to get away with anything.

And now I'm tired again. Breakfast should be here just in time for my first nap of the day.

Love, from the folding bed.


- posted using tiny keyboard

Wednesday, April 17, 2013

Proof

spindly shrubs turn into flower-splosions. spring is the best.

Tuesday, April 16, 2013

Diving into Week 4 and Spring!

Today (Tuesday) I feel alright. Might be the new meds - something appropriately called Vomex and another one with cortisone. But it's also the day before the next chemo, typically the best day of the week in terms of how I feel physically.

I'm willing myself not to think about the fact that things start up again tomorrow so I can enjoy feeling good now.

In other news, it's Spring! Truly. In fact, it's been as warm as 23C (73F) and that is t-shirt weather. Buds are finally sprouting on the bushes and Berlin is out and about on the streets. Pretty fun, very inspiring, perfect timing.

I wrote a haiku about it.


Sign of Spring

Spring mosquito buzz
around my head. Doesn't she
smell my chemo breath?


And no, I didn't get bitten all night long - pretty sure it was a dude, or I killed it with the remaining chemo in my body.

Let's hope this coming week is no worse than last week. Not too much to ask.

Saturday, April 13, 2013

Time Flying?

Thank goodness time is flying by now. I haven't posted for like 10 days!? Week 3 is almost over, at least that's how it feels, and the past two chemo reactions have not been as tough as that first week. I still spend a day - or three - in bed, but I don't feel as bad. And this week, the meds seem to be working as well as they ever have. Good news!

But I am pretty tired. So this is gonna be short. Thanks for asking, everything is okay. I'm all used to the picc line now and pretty happy about not needing to be needled all the time. Side effects have been mostly minor, except for all the tiredness I have. And I find it hard to look at the computer screen. So... haven't watched many movies. The days can pass slowly.

The big challenge now is to keep my weight up. That's right, apparently weight loss is a no-no for a patient on chemo and radiation. One's ability to maintain weight is linked to a better prognosis and stuff. I've been going home the day after chemo (so good) but if I lose more weight this week they're gonna try to keep me at the hospital longer. To make sure I eat. Which is funny because just thinking about the hospital makes me wanna toss. The words 'hospital food' are banned in our home. Joshua has figured out how to feed me stuff I will eat. So to stay at the hospital would be counter-productive, in our view. Luckily, we ran into Dr. Marnitz (the lady in charge) and told her what was up. She was like, 'yeah, I can understand that.' And she called Dr. Hipste-I mean Dr. Exner to tell him that it's probably better if I go home. We'll see. They made us buy a scale and I have to track my weight this week, no lying. I mean, I am trying but it is not as easy as it may sound to get your weight to go up when you like eating a healthy diet.

Yesterday I sent Joshua out for a pint of chocolate Haagen-Dazs to help the cause. I think that's probably the silliest thing ever, but we're trying. Also, I didn't take my nausea medicine quickly enough and ended up spewing the half-pint I ate anyway. So much for that attempt. We don't have a freezer, so it's important to just eat it when it arrives.

Anyway, these are the daily trials and tribulations, and they only last for two more weeks. I can't believe it. It feels like I can do it and get through it. One last fun tid-bit that you probably don't want to know: the location where the radiation is administered is subject to hair loss. So, no troubles with the hair on my head from chemo buuuut...


Thursday, April 4, 2013

Delay Day



A few days after chemo last week I was overcome by a series of extreme yawns that forced me to expand my lungs as far as possible and then exhale everything through my mouth, as you do after a yawn. This happened five or six times in a row, kind of like when you walk out into bright sunlight and suddenly have to sneeze.

It made me think that perhaps my body was using my breath to get rid of some cisplatin. We get rid of a surprising amount of toxins via the lungs and breath, so it’s not unreasonable to assume I was doing just that. 

Today is chemo day two. The picc line is proving it’s worth, as I’ve not been needled this week at all. Plus I’m getting used to it and much less worried about it, and I’ve been reminded by a nurse-who-should-know that it’s better to endure this now than to add thrombosed veins to my list of problems. 

The chemo was given after a bag of water spiked with pain meds, then an immediate dose of radiation at 1pm. Then the second bag of water. This was supposed to happen yesterday, but everyone screwed up. 

We arrived at 10am yesterday, as instructed. Well it might have been a bit later, but it’s hard to feel bad about a few minutes when we ended up waiting in the waiting area for about 2 hours after checking in. My appointment for radiation was at 1pm, and at around 12:30 they brought us to my new room. I prepared for radiation and went, assuming we’d be doing the cisplatin afterwards.

This is why you tell a patient like me the reasons for things. A doctor came in a little after 2pm and said, ‘So Mrs. Marks, when is your radiation appointment today?’ This is something the nurse had already learned from me when I checked in on the floor, but I said I had just completed it, proud of myself for being on time and ready for him. But his response was, ‘Oooh, that suc- is not good. Not good at all.’ 

Nobody told us that having radiation immediately after the cisplatin was important. I’m only getting it once a week, after all, and radiation happens each week day. However, because I had the radiation yesterday before chemo, they delayed chemo until the next day so I would have it immediately before my radiation treatment. Joshua and I would love to see the study that compares chemo given directly before and given 9 hours before radiation. I suggested that we give me radiation last thing before bed and then get me in for radiation first thing in the morning. ‘A nice suggestion, but it is not possible.’

They said I could go home if I wanted, but since I was already settled in a nice room with it's own bathroom I figured I'd just stay. The schlep to and from home wasn't that much fun. And Joshua stayed through the afternoon and we went out for a tiny dinner. My appetite is about the size of a large apple these days. I had no roommate and watched a movie before going to sleep. Today has been relaxed, I'm reading a book I found in the waiting area and it has me enthralled, thank goodness. I have a new roommate and she is relatively healthy. Her name is Ramona. She speaks no English, but we communicate in smiles and commiserate about the awfulness of the food. 

Around 5pm today I decided that I needed to get outside for a walk. Last week, the worst day was the day after cisplatin, so I knew that tomorrow wouldn’t be an option. I decided to go and walk along the canal that is visible from my window. 

Leaving the building I realize again that the air inside is not good. It’s not like it smells bad everywhere, but it doesn’t smell good either. Lots of whiffs of alcohol hand sanitizer. The entire bottom floor where there’s access to the outside smells like tobacco smoke because people are smoking right outside the doors. We once saw patients in hospital gowns smoking in the entry bufferways when it was very cold outside. Late last night I was sure I was smelling smoke, as if one of my hall mates is smoking in their room when the floor is quiet.

I hold my breath while I get through the ground floor and the cold air outside smells and tastes incredibly fresh by comparison. As I leave the hospital campus I feel like I’m escaping, which is nice. I cross to the canal side of the street and walk along the wide bike and ped-way. It’s pretty grim. Still depth of winter according to all the trees and bushes. Not a green thing in site, everything is grey. 

Across the canal is a metal disposal plant; I watch a giant scooping machine take large scoopfuls of metal fragments, place them in another bin, and then crush them with the weight of the scoop. I think about water quality and realize that it’s incredibly comforting to be walking by the water, anyway. 

I thought of something Dr. Marnitz said to me, the radiologist who I first met with and who is in charge around here, but who is on vacation last week and this week. 

She said, ‘The cisplatin attaches to the blood cells and goes throughout the body. Then it is released, we don’t know how, and then the body gets rid of it.’ 

I think, ‘maybe she meant that this happens right away.’ The chemo really only does damage for this brief period of time, and then I suffer the effects of it leaving my body. Wow. This is so logical and provides an explanation for why they are inflexible about when chemo happens in relation to radiation, so I happily grasp onto it.

The path veers away from the road, thank goodness, and what is probably a green zone in brighter seasons acts as a nice wide buffer. It’s almost like being in nature. As I walk, I’m taking big breaths, trying to inhale a lot through my nose and exhale it again through my mouth, as if I’m breathing out pure cisplatin. I imagine the hospital as a bit of a stale chemo-breath house and commit to opening my window more often. 

But the idea that all I need to do over the next few days is get the cisplatin out makes me feel better. I know how to detox. If it’s really just important for that one day of radiation, then I’m going to do what I can do make the detox as quick as possible. More fennel tea for me, then, even if it’s wretched (which it’s not, turns out). After tomorrow's radiation, maybe I will feel good enough to go home.

I sit for a few minutes on a barely wide enough bollard which is not comfortable, but there’s nothing else to sit on. I think I can taste cisplatin on my own breath. I’m convincing myself that this week’s recovery will be better than last week, which makes me feel pretty good. I sure do want to be in control. I consider talking to a plant about cisplatin and then decide I might fumigate it, and of course there are no green plants or flowers with sympathetic looks. Okay Spring, I give you permission to start right up.

I wait until I’m ready and then get up and walk back towards the hospital. As I walk through the street entrance I see a sign that says this is a no-smoking hospital. Very funny. 

Tuesday, April 2, 2013

Sophomore Slump

Ugh Week 2 of 5 is the worst! Thinking about getting chemo'd again makes me want to barf, of course.    Instead of telling you what I think of side effects, I'll direct you to a favorite post from a favorite cancer blog; the post is called Side Effects. The blog is called Butt... It's Cancer.

Over the past few days, knowing I'm in for more of the same as last week has also made me want to cry. Both Joshua and I had surreality moments this weekend. This is happening? You're feeling bad because of chemotherapy?

Wednesday (tomorrow), the chemo again. Thursday I will do my best to sleep all day and eat an apple, maybe. Friday I get to go home after radiation, and then two days of nothing at home. IT SHOULD FEEL BETTER THAN THIS to be at this point. Week 2 is over before we know it. Week 3 marks the halfway point and I love halfway points. I like halfway so much that I mark the halfway point between halfway and complete (at 3/4 done I'm celebrating the half of a half!).

At halfway, you know what you did and you know you just have to do it again. It does not matter that you're tired or that the effects are cumulative or that you're sick of it - after halfway you know what's in your future and you just completed it once, so you know you're capable of getting through it. After halfway, you're on your way back home, instead of still moving farther away.

I usually tell myself that my goal is halfway and then I make it. (Think about it - all of your goals can be only half as far away as you thought!)

The halfway point for radiation treatments is the end of Week 3. But halfway with chemo? Somewhere during Week 3. So close.

Week 2 sucks so much; it's not even halfway and I'm going to be thrilled when it's over.

Hoping for the best, planning for the worst.

Cold Winter





On the way to first radiation of Week 2. U-bahn TV news says we had the coldest March in 130 years. Sorry Berlin, I needed it to stay depressing while I have depressing things to do. Summer is going to be so good this year.

- posted using tiny keyboard

Saturday, March 30, 2013

Week 1: Humor and Self Pity

The new hospital is not the old hospital. Here are some things I have been given as chores:


mo-lasses
This is, quite certainly, molasses. The first ingredient is beets. It smells and looks like molasses. I love the smell of molasses, which is fortunate because I have to make a warm water bubble bath with this and sit in it for five minutes, twice a day. They gave me a little butt tub. I laughed.

I will call her Nemo









This is meant to help me avoid mucositis, a sometimes side effect of chemotherapy.

Cisplatin is most dangerous to rapidly dividing cells, like cancer cells, the cells of mucous membranes, and white blood cells. The inside of the digestive tract is lined with mucous membranes, but how molasses is going to help all that is a mystery. Joshua says it's for the ill vapors. Maybe they like molasses and come out when they smell it?

Upsides: It smells like molasses and it is warm. At home, the space is comparatively luxurious and I don't mind at all.
Downsides: The shower in the hospital is in the hallway; it is shared by everyone on our end of the floor. It's tiny and gross and there's this little cube of space that is just barely big enough for me to put the tub down and sit in it (kind of).

Also, the water in the shower is cold. Radiation can affect the skin and hot showers can aggravate those problems. My radiologist said my skin will not be affected because they're using high frequency radiation and so I shouldn't have problems. Maybe other people on my floor get lower frequency radiation and so not-even-tepid water is all that we're allowed. Maybe nobody has bothered to ask why the shower is so damn cold because they feel sick, and grubby from not taking enough showers.

don't say 'gland-o-med'
Next up, mouth wash. Another place where the mucous membranes can get infected is the mouth. Mucositis is avoidable, and I'm unlikely to get it, but keeping clean is one way to increase the likelihood of my not getting it. This is some special mouthwash unlike any mouthwash you all have ever experienced. There's no alcohol or menthol, it has a kind of soft flavor and they call it orange. Swish for 2 minutes.

Upside: It's not that bad.
Downsides: The worst flavor comes after you spit it out. Then you have to wait for 15 minutes before you can eat or drink anything. You cannot rinse your mouth with water. Just gotta suffer through it, and it makes me want to retch a little. Best if used after each meal, but at least twice a day.




The cream. The nurses told me that I should take it home and tell them I'm all out and get more because it is The. Best. Cream. You can use it on your face, neck, body, hands, feet, everywhere and it's awesome. This is also supposed to help reduce any skin problems associated with radiation (which I'm not supposed to suffer from). But cool, I'll take it. There is no downside. It smells neutral. I can use it as often as I want, EXCEPT one hour before and one hour after radiation treatments. Why? Because it can increase the effect of the radiation and have a negative effect if used too close to treatment times. What is this stuff?








Deep breath, the pick line. Sorry, this one is just a little tough to stomach. I'm already planning my escape. This required minor surgery and it hurt a bit and it was only local anesthetic and I wanted to be sleeping. It is a little tube that goes into my arm and then into a vein and all the way to almost my heart. I saw the x-ray; there's a tube in me. I sure don't like the idea of this and the reality is even worse.

I get this fantastic modern medical miracle because chemo chemicals can do damage to veins. They did the first round intravenously, but going forward I get chemo straight to the heart. Ouch. I mean, my heart is arguably stronger than my veins. Buuuuut. Oy. Okay, so it's a good idea, the right idea. Miraculous. The thing is, I kind of hate it.

Upsides: It's held securely in place so I can't really pull on it and fuck everything up. It's also above the elbow so I should be able to move my arm like normal without anything bad happening.

pick
Downsides: There is a dongle hanging off my upper-inner arm that is connected almost to my heart. It is taped with clear magic sticker that does its job well but makes my arm look gross and saggy there. They used iodine on my arm so it's all kinda reddish, which looks unnatural. Joshua can't hug me without me cringing and trying to fling my arm aside. It makes showering difficult. It's a constant reminder that I'm sick and need serious medical help and soon I'm going to have to go back to the hospital for more poisoning. I worry about it almost constantly. I worry about it in my sleep.

Dear doctors. You guys are great. You're doing a good job. But I need to be able to take care of myself. With only a cold shower, I don't want to wash or do the butt bath. I especially don't want to do it in a shower that I share with the rest of the hall. A constipated person (side effect of chemo) is never going to be able to poop in a toilet that they share with the whole hall, because the hall mates need the bathroom too. We all interrupt each other by trying the door handle and I always have to wait to use it, something that makes me afraid of the possibility of diarrhea (side effect of radiation). I'm not comfortable squeezing around my roommate's bed to get to our shared sink to use my mouthwash and brush my teeth. Not to mention we can't open our closets all the way because there's not enough space in the room for two beds and two bedside table carts.


Joshua and I realized that there's a difference in hospital stay mentality here, and it is a good thing. To us, a stay at the hospital means something must be seriously wrong. Right? I mean, it has to be really bad for them to keep you at the hospital. But here, it's not like that. You stay in the hospital so they can take care of you. Staying overnight after a minor surgery, like having a pick line installed, is normal because they just want to be sure nothing goes wrong - or if it does, they're there to handle it. They want to be able to give you medication if you need it. That's pretty nice and not unreasonable.

At Westend, after surgery, I was totally happy to stay at the hospital. I had a nice room with a bathroom and a view out the window to trees and a clock tower. The nurses were attentive and kind (mostly). If I buzzed, someone would come to see what was up. At this new hospital I buzz and then someone asks me what I need over an intercom. I need a nurse, surprise! The room is tiny and I share it with someone else. The bathroom and shower are in the hall and shared with lots of people.

And oh my goodness the food is so bad. I was nauseous anyway, and the food made it so much worse. I couldn't really eat. Even thinking about it now makes me want to toss. The doctor in charge of the floor, a young, friendly, kind, present, capable guy who I like a lot, asked me why I didn't want to stay over the weekend. I said I wanted to be able to eat. He apologized and said that, yes, food is a problem but their contract doesn't expire until next year. The doctors are all a little surprised that I've requested to go home as much as possible. They must think I don't want to be taken care of. I've been thinking about it and I have a bunch of other things to tell him about why I would rather be at home.

I'm also planning to demand that they take out this pick line when I only have two treatments left. One in the left arm, then one in the right arm, intravenously. I want to be able to cuddle without feeling like a 13 year old in an abstinence only education program. Neerrrrvvooouuus. There may be medical benefits to the pick line, but the real-life downsides are unacceptable.

But hey, week one is over. Only four more weeks of chemo to go. I'm 1/5th, or 20%, done with chemo. It did make me feel sick, but the meds helped. It also makes me tired and weak and blah, but I figured out that good, fresh, crisp apples can cure just about anything. If I'm on a fruit diet for the next few weeks, I think that'll be okay. Fruit and peanut butter. Mmmmm. In other good news, because it's Easter this weekend we get both Friday and Monday off. My first two weeks of radiation are 4-day weeks. I am into that. It's Saturday and I feel a lot better; maybe tomorrow we can find some nature to look at.

I also want to acknowledge the power of self-pity. Self-pity is the perfect emotion when you know you deserve it. And the more you feel it - or try to stop yourself from feeling it - the stronger it gets. I'm indulging in my self-pity. I feel awful and there's very little that anyone can do to make it better.

Sometimes, crying is the best thing to do. It's kind of like finally vomiting when you feel nauseous - once you get it out you feel better. I have not needed to vomit with this first round of chemo, although I thought I might a couple of times. But crying... yeah. And it feels alright.

Joshua is doing the best anyone can, and that helps. Also, thank goodness for surprises in the mail and house plants and flowers.

good thing about this guy