Thursday, July 28, 2016

Mini-Update, 3 Years Out

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

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

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

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

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

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

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

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

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

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

Wednesday, March 9, 2016

This Blog: In Order

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


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

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

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

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

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


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

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

Wednesday, December 16, 2015

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.

Tuesday, July 21, 2015

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.

Sunday, May 25, 2014

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.

Wednesday, April 2, 2014

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.

Tuesday, February 4, 2014

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?