Cancer

I'd promised 'in sickness and in health'—but I didn't expect the sickness part to come quite so soon

This story originally appeared on xoJane.com.

The wedding was beautiful. It was winter in Oregon, but we’d miraculously discovered a reception site where you could see green out the windows (apparently in Oregon there are two options for wedding receptions: outside or windowless dungeon).

We’d had an unexpected snowstorm the weekend before, but the weather had finally turned — the sun even came out for the photos. My family, his family, our friends. So much laughter. And him. Perfect.

Six months later, I was crying in a parking lot in Pasadena, sweating in the 100 degree weather and blubbering into my cell phone, while my dad tried to make sense of my choked-up sentences. They’d found a tumor, six inches across, pressing on my husband’s lung. They didn’t know what it was. They didn’t want to tell us anything until we came in person.

It wasn’t anything concerning at first. A nagging cough that wouldn’t go away. He eventually went to the doctor, who gave him a prescription. Sometimes these things happen after a bad cold, it should clear up in a week or so.

It didn’t, so he went back. New prescription. Same problem. This went on for a while, along with a handful of cough drops each day. It grew familiar, nothing to worry about, a refrain that accompanied waking and sleeping.

There were other things too. We’d go on hikes together — small ones, no big elevation climbs — that would leave him panting and breathless. We’d joke about his being out of shape. It’s amazing how easy it is to miss things. So many dots on a page that you never think about connecting. Who’s to know which details end up being the important ones?

It was an accident, the way we found out. He’d gone in to see another doctor about recent troubles with acid reflux. They took a chest X-ray. After taking it, the technician came in to the room.

“Tell me,” he said. “How’s your general health been?”

“Fine,” my husband said. “I’ve had a cough, but otherwise fine.”

“How long have you had the cough?”

“I don’t remember — a couple months, at least. Why?”

The technician shrugged, looked away. “Just curious. We’ll be in touch.”

And then the phone call from my husband, one day after class in Pasadena. They’d found a tumor. They wanted us to come in as soon as possible.

We went, the two of us, holding hands, silent in the waiting room. The doctor was a cardiothoracic surgeon. You could tell behind the somberness he might have been a little pleased to have caught this. It was probably not something he found regularly.

“No way you have acid reflux,” he said. “What you have is a tumor, pressing on your lung.”

“What is it?”

“Could be one of three things.”

Medical terms. The doctor outlined them briefly, but they remained floating above our heads, without meaning. We tried to ask questions.

“Look, what you really need to do is see an oncologist for more testing. I have a colleague I can recommend, great guy. In the meantime, I’d recommend you go home, and don’t do a lot of research. It will make you crazy. Just wait and see.”

Just wait and see.

We went home and ate dinner at the kitchen table. I tried my hardest not to think about it, to think about anything else. But the thoughts kept creeping in anyway. We’d only been married six months. How much longer? What if—? Too many what ifs.

Later that evening, while he was getting ready for bed, I snuck into the living room and opened the laptop. Only five minutes, I promised myself. I had written down the three possibilities on a notepad, and I looked them up now. Three possibilities, ranging from not-so-bad to oh-God-please-no. I still didn’t know anything for sure, but I’d read enough to know that this could be bad. My husband called from the bedroom, and I slammed the lid of the computer, guiltily.

Two weeks of waiting, accompanied by a series of blood tests and two biopsies on the tumor. I tagged along for all of them, working early or staying late to make up for lost time. The first biopsy was especially challenging. He would have to stay awake, while they pierced his chest with a large, hollow needle and pulled out a sample.

My husband lay in a mobile hospital bed in the operating room, while the surgeon explained the procedure to both of us. Somewhere after the “large, hollow needle” part, my face flushed, I broke out in a sweat, and I realized, with a sharp and unmistakable clarity, that if I didn’t leave that room immediately, I was either going to faint or throw up all over the operating room.

“Ok, well, hope it goes well, bye!” I gasped, interrupting the doctor mid-sentence. He turned to stare at me as I hot-tailed it out of there. I made it out the door before my knees gave out, and I sunk to the floor against the hallway wall, head spinning. Several minutes later the surgeon followed me out, squatting down next to me.

“How are you doing?” he asked.

“Fine. Sorry,” I said, embarrassed.

“No worries,” he said. “Let me help you up. Can you make it to that waiting room down the hallway?”

I nodded, and he escorted me down the hall, explaining as we went the medical rationale behind why I had almost fainted. I spent the next hour watching daytime TV and flipping through year-old magazines — anything to keep from thinking about hollow needles.

Several days later the hospital called. The sample they had pulled hadn’t been quite big enough for a sure diagnosis, and he’d need to come in for another round. We both agreed that I’d stay in the waiting room.

After the second biopsy, they called again, this time to let us know they had the results. They asked when we could come in for a consultation. No, they couldn’t tell us anything over the phone. More waiting. More pretending to live life normally, and trying not to imagine what might come next.

We sat again in a chilly hospital room, neither of us speaking. My palms were sweating, my breathing rapid. A large lump in my throat threatened to lead to tears, but I was determined. No crying. Not yet, anyway.

I stared at the scuffs on my shoes, bounced a knee up and down, trying to keep warm. Finally the door opened, and a middle-aged man in a white coat entered. He had a slight paunch and dark circles under his eyes. He shook our hands, and I wondered if in the future I would remember his face with sadness or relief. He spoke quickly in a clipped voice, serious, sympathetic, straight to the point.

“Hodgkin’s lymphoma,” he said.

We stared at him. I couldn’t remember which one of the three things that was. Was it even one of the three things?

“So is that—” my husband trailed off.

“It is cancer,” he said. “But you’ll be fine. This is very treatable. You’re lucky.”

It was a refrain we heard often at the hospital, while in line for blood work, or sitting for eight hour days while drugs dripped slowly from IV bags into my husband’s veins. If we got there early enough, we could get our own little room. There was a row of them, separated from the rest of the floor with sliding glass doors. Otherwise, a big chair. He’d sleep, or watch movies. I’d do homework, read, look for nurses when he ran out of saline solution or needed another blanket.

“You’re lucky.”

And in the hospital, we were. Chemo until Christmas, radiation until Valentine’s Day. There were others in the hospital whose treatments had no end date.

“We’re lucky,” we kept saying, while his hair and eyebrows fell out, and his face thinned, eyes growing large in their sockets. His white blood cell count plummeted, leaving him with a weakened immune system, and he worked for an after-school program: lots of kids, lots of germs. He had to stop. Nothing to distract him from the nausea, while I went to work and he stayed at home, waiting. So much waiting. But, we joked, at least the cough was gone.

The last day of chemotherapy was two days before Christmas. He was exhausted, and giddy to be finished. We traveled home to visit family, relishing the break from our new reality. After the holidays, it was time for radiation. Which seemed to be better than chemo, hardly any side effects at all, until after several weeks it hurt to swallow, and he was reduced to drinking smoothies and speaking softly. But that too ended, just days before his 26th birthday, two months after our first anniversary.

It’s been five years now, and the cancer is still in remission. Life moves on, other things happen, and it’s tempting to block out those early memories, to forget that that was the first year of our marriage — the smell of hospitals, the quiet hours of waiting, the thinning hair and eyebrows.

Sometimes when going through old photos, I’ll come across one from that year, and pause. I’ll remember the refrain of the doctors, the nurses: “Hodgkin’s? You’re lucky.” And I’ll look across to where my husband is typing on the laptop, or watching the game, or just being goofy, and think, Yes. We were.

AnnaLouise Carter is a writer living in Los Angeles.

The announcement came as a shock to Bostonians who see Menino as an indelible presence in their city

Former Boston mayor Thomas M. Menino has stopped treatment for advanced cancer, the much-beloved titan of Boston politics said on Wednesday.

Menino’s announcement startled and saddened Bostonians, who have seen the five-term mayor — perhaps still the most recognizable person in Boston’s political scene — carry on with business as usual since he was diagnosed with advanced-stage cancer in Feb., the Boston Globe reports. Menino had left office just a month before the diagnosis.

“While I continue to fight this terrible disease, I feel it is time for me to spend more time with my family, grandkids, and friends,” Menino said in a statement. “Angela [Menino’s wife] and I are grateful for the tremendous outpouring of support and kindness shown to our family and ask that everyone keep us in their thoughts and prayers.”

The 71-year-old also suspended a tour to promote his book, Mayor for a New America.

Menino helmed Boston for two decades as the city’s longest-serving mayor, and he is widely credited with shepherding Boston through tough economic times to become a bright, resurgent city.

“It’s hard to do anything in the public eye, and even this, even this, you do with class,” said one commentator on the statement posted to Menino’s Facebook page.

“Thanks Mr. Mayor,” he said.

[The Boston Globe]

Philip Johnson is a Catholic seminarian from the Diocese of Raleigh.

I was diagnosed with incurable brain cancer, but suicide is a temptation that avoid the important reality of life

Last week I came across the heartbreaking story of Brittany Maynard, a 29-year-old woman who was diagnosed with terminal brain cancer one year after her wedding. When doctors suggested that she might only have six months to live, she and her family moved from California to Oregon in order to obtain the prescriptions necessary for doctor-assisted euthanasia. She is devoting her last days to fundraising and lobbying for an organization dedicated to expanding the legality of assisted suicide to other States.

Brittany’s story really hit home, as I was diagnosed with a very similar incurable brain cancer in 2008 at the age of 24. After years of terrible headaches and misdiagnosis, my Grade III brain cancer (Anaplastic Astrocytoma) proved to be inoperable due to its location. Most studies state that the median survival time for this type of cancer is 18 months, even with aggressive radiation and chemotherapy. I was beginning an exciting career as a naval officer with my entire life ahead of me. I had so many hopes and dreams, and in an instant they all seemed to be crushed. As Brittany said in her online video, “being told you have that kind of timeline still feels like you’re going to die tomorrow.”

I was diagnosed during my second Navy deployment to the Northern Arabian Gulf. After many seizures, the ship’s doctor sent me to the naval hospital on the Persian Gulf island nation of Bahrain, where my brain tumor was discovered. I remember the moment I saw the computer images of the brain scans – I went to the Catholic chapel on base and fell to the floor in tears. I asked God, “why me?” The next day, I flew home to the United States to begin urgent treatment. A few months after radiation and chemotherapy, I was discharged from the Navy and began formation for the Roman Catholic priesthood, a vocation to which I have felt called since I was 19 years old. Despite all of the hardships and delays in my training and formation over the past six years, I hope to be ordained to the transitional diaconate this Spring and to the priesthood one year later.

I have lived through six years of constant turmoil, seizures and headaches. I often changed hospitals and doctors every few months, seeking some morsel of hope for survival. Like Brittany, I do not want to die, nor do I want to suffer the likely outcome of this disease. I do not think anyone wants to die in this way. Brittany states relief that she does not have to die the way that it has been explained that she would – she can die “on her own terms.” I have also consulted with my doctors to learn how my illness is likely to proceed. I will gradually lose control of my bodily functions at a young age, from paralysis to incontinence, and it is very likely that my mental faculties will also disappear and lead to confusion and hallucinations before my death. This terrifies me, but it does not make me any less of a person. My life means something to me, to God, and to my family and friends, and barring a miraculous recovery, it will continue to mean something long after I am paralyzed in a hospice bed. My family and friends love me for who I am, not just for the personality traits that will slowly slip away if this tumor progresses and takes my life.

Obviously, I have lived much longer than originally expected, and I attribute this to the support and prayers of others who have helped me to keep a positive outlook. I will never claim that I have dealt with my illness heroically or with great courage, no matter what others might observe or believe from my reserved disposition. I am shy and introverted, so I have not let many people become aware of the depth of my suffering. There have been times over the past six years that I wanted the cancer to grow and take my life swiftly so that it would all be over. Other times, I have sought forms of escape through sin and denial just to take my mind off of the suffering and sadness, even if only for a few moments. However, deep in my heart I know that this approach is futile. My illness has become a part of me, and while it does not define me as a person, it has shaped who I am and who I will become.

In Brittany’s video, her mother mentions that her immediate hope was for a miracle. My response to my diagnosis was the same – I hoped for a miraculous recovery so that I would not have to deal with the suffering and pain that was likely to come. However, I now realize that a “miracle” does not necessarily mean an instant cure. If it did, would we not die from something else later in our lives? Is there any reason that we deserve 15, 20, or 30 or more years of life? Every day of life is a gift, and gifts can be taken away in an instant. Anyone who suffers from a terminal illness or has lost someone close to them knows this very well.

I have outlived my dismal prognosis, which I believe to be a miracle, but more importantly, I have experienced countless miracles in places where I never expected to find them. Throughout my preparation for the priesthood I have been able to empathize with the sick and suffering in hospitals and nursing homes. I have traveled to Lourdes, France, the site of a Marian apparition and a place of physical and spiritual healing that is visited by millions of pilgrims each year. I have had the great opportunity to serve the infirm there who trust in God with their whole hearts to make sense of their suffering. Through my interaction with these people, I received much more than I gave. I learned that the suffering and heartache that is part of the human condition does not have to be wasted and cut short out of fear or seeking control in a seemingly uncontrollable situation. Perhaps this is the most important miracle that God intends for me to experience.

Suffering is not worthless, and our lives are not our own to take. As humans we are relational – we relate to one another and the actions of one person affects others. Sadly, the concept of “redemptive suffering” – that human suffering united to the suffering of Jesus on the Cross for our salvation can benefit others – has often been ignored or lost in modern times. It is perfectly understandable that medication should be made available to give comfort and limit suffering as much as possible during the dying process, especially during a terminal illness, but it is impossible to avoid suffering altogether. We do not seek pain for its own sake, but our suffering can have great meaning if we try to join it to the Passion of Christ and offer it for the conversion or intentions of others. While often terrifying, the suffering and pain that we will all experience in our lives can be turned into something positive. This has been a very difficult task for me, but it is possible to achieve.

There is a card on Brittany’s website asking for signatures “to support her bravery in this very tough time.” I agree that her time is tough, but her decision is anything but brave. I do feel for her and understand her difficult situation, but no diagnosis warrants suicide. A diagnosis of terminal cancer uproots one’s whole life, and the decision to pursue physician-assisted suicide seeks to grasp at an ounce of control in the midst of turmoil. It is an understandable temptation to take this course of action, but that is all that it is – a temptation to avoid an important reality of life. By dying on one’s “own terms,” death seems more comfortable in our culture that is sanitized and tends to avoid any mention of the suffering and death that will eventually come to us all.

Brittany comments, “I hope to pass in peace. The reason to consider life and what’s of value is to make sure you’re not missing out, seize the day, what’s important to you, what do you care about – what matters – pursue that, forget the rest.” Sadly, Brittany will be missing out on the most intimate moments of her life – her loved ones comforting her through her suffering, her last and most personal moments with her family, and the great mystery of death – in exchange for a quicker and more “painless” option that focuses more on herself than anyone else. In our culture, which seeks to avoid pain at any cost, it is not difficult to understand why this response is so common among those who suffer.

I have experienced so much sadness due to my illness, but there have also been times of great joy. The support I have received from others encourages me to keep pushing on. I want to be a priest, I want to see my three young nephews grow up, and these goals give me the hope to wake up each day and live my life with trust.

I will continue to pray for Brittany as she deals with her illness, as I know exactly what she is going through. I still get sad. I still cry. I still beg God to show me His will through all of this suffering and to allow me to be His priest if it be His will, but I know that I am not alone in my suffering. I have my family, my friends, and the support of the entire universal Church. I have walked in Brittany’s shoes, but I have never had to walk alone. Such is the beauty of the Church, our families, and the prayerful support that we give to one another.

May Brittany come to understand the love that we all have for her before she takes her own life, and that if she chooses instead to fight this disease, her life and witness would be an incredible example and inspiration to countless others in her situation. She would certainly be an inspiration to me as I continue my own fight against cancer.

Philip Johnson is a Catholic seminarian from the Diocese of Raleigh who has terminal brain cancer. This article was originally published on DioceseOfRaleigh.org.

The best thing someone did for me was to just be calm

This story originally appeared on xoJane.com.

I was diagnosed with thyroid cancer two years ago.

It was a confusing whirlwind where I felt more alive than ever, then flushed with the irony of that, became scared and isolated. And then I just wanted everything to go back to normal.

What I realized very quickly is that people don’t know what to say when something like this happens. And as someone who’s been on the other side, I thought I’d write a little bit about what helped me and what didn’t.

Listen and follow their lead.

When I wanted to talk about it, I talked about it. When I didn’t, I didn’t. If I’m not talking about it with you, I’ve made that choice.

There is a circling-the-wagons thing that happens with a cancer diagnosis, and the information and the fear and the mood swings can only be entrusted to the very top tier of one’s support system. If you are a friend of someone diagnosed with cancer and all they want to do is talk about work problems and good books they’ve read and this one brunch place they’re loving right now… let them. They’re not in denial and they don’t need you to brave the waters of talking about The Cancer. They need time off from The Cancer and the service you’re providing by letting them not talk about it is invaluable.

Prayers and good thoughts. Talismans and good luck charms. A stiff drink and nice big popcorn movie. Normalcy becomes the hottest commodity when one’s life has been hijacked.

Be ready for “weird.”

A cancer diagnosis feels like the most surreal thing in the world. It’s not an easy thing to process — if we can ever truly process it at all. You might not feel sick. You might not look sick. And now you’re being told there’s essentially a time bomb in your body… so you know, come back in a week and we’ll take some blood. NO! GET IT OUT RIGHT NOW?

And you have to make plans and keep showing up to work and follow orders and act like it’s not a big deal for your worried loved ones and be positive about it because you totally got it in time and what a blessing and all you can think about is going back to a time when you didn’t have cancer.

So you’re off. You know you’re off, too. You can’t get into the groove of things. And you want to keep apologizing, which, for me, comes out like, “I know I’m weird, just…” Because when you are a friend to someone who has been diagnosed, they aren’t going to know what’s happening either.

When you get a diagnosis, you’ve been told some crazy stuff about how your life is going to be in the coming months. It’s like the worst, most morbid Choose Your Own Adventure book ever. “Has your cancer spread to the lymph nodes? Turn to page 76!” Either you’re going to be fine or you’re… not. And that information hits you in waves.

You never know when it’s coming it’s just… you know when you think of some really embarrassing stuff you did back in the day? And that flush sweeps across your face? That’s what it feels like. The paralyzing fear.

So, let your friend be weird. They don’t know why they’re like that either.

Don’t preach.

Please don’t tell me that meditation really worked for you. Don’t tell me to marvel at trees because none of us knows how long we’re going to be here. Please don’t quote Eckhart Tolle and implore me to “find the joy.” Also, please don’t assume that I haven’t found my own ministry during this hard time.

Instead of trying to arrogantly educate me on what you’d do in the hypothetical, why don’t you listen to me about what I’m actually doing in the reality of it. Because you don’t have cancer. I do. So your platitudes about the evils of gluten and the wondrous qualities of kale sound so stupid to someone thinking about dying.

Please understand that there is a difference between what you expect from your life in the best of times and what I’m muddling through in the worst phases of mine. And I know. You read this article once where… I don’t care. I really don’t. I really don’t want to sit across a table from you and listen to what more you think I should be doing to fight for my life. Save it. It really is wildly tone deaf and most of all? Doesn’t help.

Complicated isn’t bad.

People really wanted me to be OK. Are you OK? I wonder if she’s OK.

Thing is, I wasn’t going to be OK right then. And that turned out to not necessarily be a bad thing.

Having cancer changed the course of my life. It made me think differently and live differently. On a cellular level. And that wasn’t an easy thing to excavate. It really was a trial by fire.

So, if your friend doesn’t seem OK? It’s complicated. It’s not necessarily a bad thing. It’s not something you think you need to talk to them about. They may not be “sad” — they could be thinking about their life and how they’ve lived it and how they want to live differently. Maybe they’re getting angry. That’s a good thing. Maybe they’re overwhelmed by the outpouring of love and feeling grateful. It’s all such a majestically beautiful, terrible Jackson Pollack painting.

Feelings are good. Feelings are messy. And feelings make us grow. Let your friend feel. Let your friend not be OK. Let your friend be comfortable in the not OK.

Talk about the right now.

It’s hard not to tell your friend that everything is going to be OK. We feel like we’re helping by shrugging off their worries and lightening the mood with “But you’re going to be fine!” It might not be. And also? It’s not all that fine right now.

The best thing someone did for me was to just be the calm flight attendant on the plane telling me where the exits are. They’re not fazed. They’re not worried. They’re hearing me, they’re providing copious amounts of tea and making sure that I have a blankie. They’re right here, right now. They’re pragmatic and sympathetic.

How was the appointment? Let’s talk about that. What’s up with that ham-fisted phlebotomist? Stay in the moment. Feel what’s happening now and talk about this moment on the checklist. Lighten the mood when you think it needs it or just listen and let them see your concern.

I think it’s actually the toughest tightrope to walk because it demands that you experience what’s happening in real time with your friend and most importantly understand that it’s not about you. By staying in the moment and not defaulting to a day when everything is going to be OK, you are telling your friend that you’re in this and moreover, you’re not going to be bringing your psyche to the party. This isn’t going to be about making you feel better. This isn’t going to be about acting fine so you don’t worry. This is just two people going through some scary stuff, making sure your seatbelt is buckled safely and that the drinks cart is on its way.

Also, don’t tell me I should start checking things off my Bucket List or Carpe Diem! Let’s not act like I have one foot in the grave.

Don’t get off on my drama.

You can sniff ‘em out on Facebook. You have suspicions. We all know them. The Drama Vampires.

There’s a part of you that actually thinks they’ll hold it together when your diagnosis comes down. They couldn’t make this about them… No? That’s… I mean, how… And then you’re sitting across from them and reassuring them and making sure they’re fine and making sure they’re taken care of during this trying time. THEIR FRIEND HAS CANCER, GUYS. Uh, yeah. You know. You’re the friend.

If you’re one of these people, it comes down to one simple question: Is the drama and attention you’re receiving worth more to you than the friend you are most certainly going to lose? Because cancer has a way of clarifying things. And a friend selfish enough to make your diagnosis about them is going to be the first one on the chopping block.

Furthermore, your friend’s cancer diagnosis is theirs to tell. Not yours. You should never divulge someone else’s diagnosis just so you can feel important or in-the-know. It’s a breach of trust. You’re not helping your friend; you’re feeding your own ego.

In the end, your friend is still your friend. And I think that’s the most important thing to remember: yes, this is a particularly challenging time but it’s not the only thing about them.

Make sure to let them be something other than A Person With Cancer. Help them remember this, because sometimes when you’re in the thick of it, that’s all you fear you are.

Liza Palmer is an author living in Los Angeles.

New rat research raises health questions for researcher

“Low T” therapy is a fast-growing trend for men who want to jack up testosterone—which declines naturally with age but which can also be clinically low in some people—and the testosterone therapy industry is predicted to reach $5 billion by 2017. The long-term safety effects of supplementing with the hormone is still in question, however—especially in light of a study earlier this year that found double the heart attack risk in certain men after starting testosterone treatments. Other research suggested there was no meaningful increase in heart risk, adding to the confusion. But a new rat study published in the journal Endocrinology raises some alarming questions about the increasingly popular drugs.

Maarten Bosland, PhD, study author and professor of pathology at the University of Illinois at Chicago’s College of Medicine, devised an animal model to test the tumor-promoting effects of testosterone in rats. He exposed a group of rats to a carcinogen, which would put them at risk of developing cancer. He also gave some of the rats testosterone, but no carcinogen. In a third group, he administered both the carcinogen and the testosterone. Then, he measured tumor growth among the two groups.

None of the rats developed prostate cancer when they were just exposed to the carcinogen, but 10-18% of them did when they were just given testosterone. When the rats were exposed to the carcinogen and then given testosterone—even at very low doses—50-71% developed prostate cancer. “I was totally amazed about how strong testosterone can work to promote the formation of prostate cancer in these animals,” he says.

Of course, an animal model can’t determine what will happen in men, but Bosland thinks a similar effect is possible. “Absent of having solid human studies, we won’t be able to say that—it’s just an extra warning signal,” he says. “But I think it’s a clear indication that there is risk.”