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