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This is a reflective piece that I’ve avoided writing. It’s hard to write about cancer—yours, your husbands, your friends—all bring a rush of pain and fear that lands in your stomach and wraps itself around your throat. Lots of things that were automatic, like sleeping, command your attention and require an effort to sustain. So I have waited nearly ten months to write about the topic (event? process?) that has overshadowed pretty much everything since my husband Mike received a diagnosis of prostate cancer.
First—the good news: Mike was able to get world class treatment for his cancer and his prognosis is excellent. And because we’re retired, both of us could go to Houston and be together while he had several sessions of proton beam therapy. The bad news—and this is just for me—is that several people in my life have had cancer including my college roommate and dear friend Janet, who had breast cancer back when it was a death sentence. Gone at 39. My previous husband died of melanoma when he was 40, after 6 months of surgeries, chemo, and radiation. It was combat and we lost. Three years ago my best friend was diagnosed with ovarian cancer and chose aggressive treatment—so far, so good. Cancer, the fact of it and even the word itself, is overlaid with fear and reflexive denial for me. This time, however I experienced being the partner of a cancer patient differently. For two months we lived in Houston, near the renowned MD Anderson Cancer Center.
Houston is different. We were reminded of this by the ads on TV for the Texas primary election, all of which ended with what is clearly a dearly held axiom: “This is Texas, not California.” Occasionally the tag line would be switched up: “This ain’t California; it’s Texas” or the pithier “This ain’t California.” Okay, message received. Mike briefly forgot this fundamental truth one day when we were in a Fresh Market. I may as well admit right here that one of us has a relentless sweet tooth and the other is his partner in crime. So we were wandering through the store, and, seduced by the mouthwatering displays of pastries, cookies, and candy, we selected quite a few. On the way up to the counter, I whispered to Mike that we looked like we had the munchies. That’s all I said. When it was our turn to check out Mike said in a loud and carrying and (he thought) funny tone, “We’re not smoking marijuana.” That stopped traffic at the Fresh Market. There was a brief, appalled, collective silence and then the people behind us moved to another line. The beauty queen smile of the checker faltered but then she pasted on another one and started ringing us up. She kept her eyes on us and processed our order at lightning speed. On the way out I told Mike, “This ain’t California, Honey.”
Yes, in so many ways, Houston is not like Northern California. Houston’s weather is so changeable that a 90 degree day can be followed by a 45 degree day. The humidity is so much a part of the city (even in February and March when we were there) that the weather report includes a visual of a woman’s head and rates the level of “hair day” one can expect. If my hair was any indication, one of the humidity predictions should’ve been limp and frizzy with a chance of unattractive curl. I think the weatherman confined himself to good, bad and iffy hair days. Some days we could sit by the pool at our complex and other days we braved strong winds with or without rain to get out of our 630 square foot apartment. Wherever we went, we drove into potholes and got clear on why there are so many four wheel drive trucks in the city. Houston is a city of potholes. Apparently the disastrous combination of a drought followed by a season of torrential rains coupled with clay like soil-made large parts of Houston sink into the earth and turned the roads into obstacle courses. Often there was no way around the holes and you just had to grit your teeth and hope you came out on the other side. People who complain about their local roads need to drive around Houston, which we did for seven weeks.
Speaking of Houston and vehicles…this is a town that does not tolerate lollygagging. The instant the stoplight changes to green, you are expected to move. The slightest hesitation is greeted with a cacophony of blaring horns. Even after we had shed our laid back, California ways and stepped on it, we continued to get the honk treatment. Observation taught us that merely moving was not enough. No, the driver had to tear away from the light, accelerating as fast as the car could handle. And this is the driving style in Houston—drive as fast as you can everywhere, slamming on the brakes when necessary. This makes for exciting freeway travel. In a California city–say San Francisco—brake lights ahead signal a slow down or even stop for all cars. And it is the unwary driver who ignores those red lights because they mean that everyone needs to slow down. On the Houston freeways, brake lights just mean that one driver has ridden up on the butt of another car and has been forced to slam on the brakes. It took us a few rides before we learned to ignore those lights.
Houston is also a city of kind, friendly and genuine people. The day we arrived, we went to a nearby Randall’s market (just like Safeway) to stock up on bread, eggs, cheese, condiments, milk, cereal, etc.—the basic things you need to set up a kitchen. I was paying and Mike was behind me chatting up a young woman whose husband was a doctor at MD Anderson. (With 76,000 Houstonians employed by MDA, this would become a theme. Everywhere we went, we encountered folks with an MDA connection). Mike, who doesn’t know a stranger, inevitably ends up in a conversation. I tend to be more reserved, but this time the checker started talking to me. She asked if we were moving into a new place and I told her we were just going to be in Houston for two months. Then she nodded toward Mike and asked which one of us was getting treatment. Stunned, I told her that Mike had prostate cancer but that “he’s going to be all right,” my mantra. After she finished our transaction she came around the corner and took a rather surprised Mike’s hands, looked him in the eye, told him she would pray for him and she knew he was going to be fine. I didn’t doubt her for one second. This happened several times, and each time it was comforting.
This generous spirit characterized all of the people we met at the Proton Beam Center and throughout the MD Anderson complex. Everything is designed to make it easy for the patient. The underground garage has pathways to the elevators and reminders about what floor and section you are in. These signs continue when you exit the elevator and head to the rotunda that has several elevators leading to different areas, like, for instance, the Genitourinary Clinic, where a lot of men of varying ages, usually accompanied by women with strained eyes, wait for consultations. Or the Radiation Oncology Clinic, where test results are explained and a treatment plan developed. Each clinic we visited had art and inspirational stories on the walls, a large tropical fish aquarium (very soothing), snack and drink machines, comfortable furniture, and tables with in-progress jigsaw puzzles. Every employee was friendly and pleasant and (most important) patient. The thing is, when you receive a cancer diagnosis, it’s hard to take in all of the information at first. I listened to Mike’s doctor explain the results of the MRI and I could see on Mike’s face that he was getting none of it. I learned to ask questions that would cause the doctor to repeat information. He was on to me pretty fast, and after a while he made sure I understood everything, knowing that I would relay it to Mike later.
Once Mike began treatment we spent three afternoons a week at the Proton Beam Center. I have to explain the way patients were prepped to receive radiation. First of all the bladder needs to be full to protect it. An ultrasound machine determines if the patient needs to “release” some of the fluid before treatment. This doesn’t happen often, but when it does the patient is given a measuring cup and told exactly how much he can pee. This doesn’t sound easy or pleasant or (to me) even possible. More often the patient has to drink more water; when this happens he is sent to the back of the radiation queue, the proverbial “walk of shame.” The rectum also needs to be protected. And a balloon is involved. Each time a stint is inserted and air is pumped into the stint to inflate the balloon that will protect the patient. The “Balloon Boys” is the moniker at MD Anderson; at another treatment center they are called the “Brotherhood of the Balloon.” The men all wait together in a room and I think the atmosphere could be described as Eau de Locker Room. The men relax in their hospital gowns and talk, sports, family, and cancer. I think this is an inspired way to make these men as comfortable as anyone who is about to have a stick and a balloon shoved up his butt can feel.
Meanwhile, in the light-filled outer waiting room there was a beautiful fountain, coffee and mints, comfy furniture, and sick children. You see, proton beam therapy was originally developed for pediatric brain tumors. The specificity of the beam makes it a viable treatment. Since pediatric brain tumors are blessedly rare and the proton beam machines incredibly expensive there are only 13 in this country right now. So these parents and kids were lucky—a word I can hardly bear to ascribe to these families—to be able to receive this treatment. If doctors hadn’t figured out that this therapy works on prostate cancer, there would be even fewer of these machines. So, in the light-filled waiting room, parents with babies and toddlers talked about sedation because the children are too young to hold still for delivery of beam therapy. Older children did homework and a teenage boy played games on his phone. There was no playing of the “cancer card” here; I could see that the parents were committed to keeping life as normal as possible. Every now and then a gurney bearing a tiny patient would be wheeled into the room and a parent would rush to join the parade of people taking care of this little person. They all got on an elevator and disappeared. All of the children had lost their hair; all had the round faces that come with taking steroids. Some of their parents looked shell shocked behind their smiles and murmured, prosaic reminders. “Don’t forget to put sunscreen on your head before you go back to school.” “You need to get those math problems done before treatment; you’ll be too tired afterwards.” Their bravery and resilience was humbling and inspirational and, ultimately, too painful to witness.
After the first day, I sat in the outer waiting room, armed with headphones and a crochet project. I sat alone in a chair near the fountain and I was soon joined by a little girl, maybe 8, who was writing in a work book. I hope the woman with her wasn’t her mother because she was mean. The girl would frequently look up and smile and wave at other patients; this exasperated her companion who adjured her to “get busy and quit fooling around.” The fact that she had a German accent may have made this sound harsher than she intended. The little girl was unperturbed and went on working problems. The next day I sat on a couch behind the family groups that knew each other, probably because their children’s appointment schedule coincided. This gave me a view of many families and a teenager who looked somewhat like my son, if he had had cancer and lost all his hair. After two weeks I asked Mike if he cared if I came with him on treatment days, which he didn’t. After all, the Proton Beam Center was only a mile from our apartment and Mike always drove there and back, so it wasn’t like I had a function. And Mike spent his time with the Balloon Boys in the locker/waiting room. So it wasn’t like I was keeping him company. But still I felt like a coward for not going so I went for another week.
I never interacted with the parents although I did engage with some of the kids. I helped the little worker girl with a vocabulary assignment and she told me her goal was to be caught up with her class when her treatment was over and she was all better. She had to miss school because she couldn’t risk an infection. Her name was Annika and I never mustered the courage (or insensitivity) to ask her if that was her mother who brought her. I asked the teenager (Josh) what game he was playing; we chatted I and ended up showing him a picture of my son Max. Josh seemed flattered that I thought he looked like Max. I listened to a heartbreaking conversation between parents of toddlers—one of the children was starting chemotherapy when they went back home. He had already been treated for a tumor—this was a recurrence. The mother said it was a good thing her son could get more proton beam radiation. A good thing? Lucky? I understood the need for hope that drove these parents. Being here propelled me back 21 years in time to the futile 6 months of Bruce’s treatment and the little victories that gave me hope. After three weeks I couldn’t go back to that light-filled room and stayed in the apartment painting pictures of pears until Mike’s last appointment.
While I painted I thought about how none of the patients or families were self-pitying, about the frequent laughter I heard in the waiting room. I thought about Mike and the grace with which he approached his cancer and the optimism he brought to his recovery. He never played the cancer card. Not once. He never asked for or expected special treatment from me or anyone else. I thought about my Aunt Aggie, a strong and funny lady. She has had cancer more than once and she made a joke of the cancer card. “Can you get me a coke? I have cancer.” Her family laughed and told her to get herself.
The odd thing is that I was the one who played the cancer card.
In January, I had started a new life insurance policy with the same company I had previously been insured by. I specifically asked the agent if the new policy would automatically cancel my old one because the premiums were going to go up from $40 to $400 dollars a month. He said yes and that he was also canceling my husband’s previous policy which would jump to $1400 monthly. In March I was checking my credit card statements online and I noticed that we had been charged the new inflated rates on the old policies–$1800. I called the agent who assured me that he never told me the old policies would be cancelled and gave me a number to call, telling me that the money would “probably be refunded.” When I called, a woman told me that the policies had to be cancelled in writing whereupon I promptly burst into tears. I told her we were in Houston and why; I kept apologizing for crying and said it was just a lot of money to lose. She was on my side in a flash. She gave me her email address and had me fax letters cancelling the policy and explaining what happened, not to the big company fax but to her personal fax machine. She told me she would be in early the next day (a Saturday) and would get the faxes and process them right away. I asked if she would email or call and let me know she had received them and that they were what she needed. The next day Mike and I went to Galveston so I could put my feet in the Gulf of Mexico. About 9:00 I received an email that all of the documents were there and would work. The email mentioned that she didn’t call because she didn’t want to wake us up but that everything was taken care of and that she knew Mike would get well. Also she was praying for us.
My playing the cancer card happened again when I was trying to convince Sirius XM that I shouldn’t be charged fees on a truck we hadn’t owned since 2010. It’s not that I intended to bring up Mike’s prostate cancer; it was more that I was uncharacteristically overwhelmed when I had to deal with these problems over the phone and while away from home and all the paperwork that would prove my case. The gentleman was very nice, refunded the fees and told me he had a “feeling that [my] husband would be well.” Meanwhile, in emails to family and friends I dwelled on the funny things like how Mike, after hormone injections to suppress testosterone, bought 4 pairs of shoes at the outlet mall. With people I knew I held it together; with strangers I broke down. At the Blake Shelton concert I offered to email the pictures I was taking to the girl sitting next to me. Her iPhone couldn’t zoom as well as my camera. She asked me if I was enjoying the show and I said yes and that we were in Houston because my husband had cancer. Then she put her arm around me and I cried.
I have to wonder what it is about me that makes me impenetrable to those who know me (“Mike’s fine; we had a great time in Houston. Everything’s fine.”) and open with those who will never see or talk to me again. Part of it is that I know our family and friends are dealing with their own fears about Mike’s health and maybe their own fears about cancer. I don’t believe that bursting into tears and saying that I’m terrified about losing the love of my life is something anyone who knows us wants to hear. But it’s not even a possibility; it’s not on the table. Among friends and family I must be the person who believes all will be well, and I am that person most of the time. I think about the parents in the light-filled waiting room. Maybe among people they would never see again they could tell truths too hard for their families to hear. And in that company of beloved, desperately ill children, they could also muster fragile hope for a better future. Because, here’s the thing: I have no right to their kind of pain. It is not my child with cancer that is likely incurable; it is my husband and he’s going to be all right. That’s my mantra and I believe it.
travels without fiona (the dog) 