So much of my son and my daughter’s young lives have been filled with concern over their parents’ health. But yesterday, it was Paul’s day. And I was so thrilled to be there. Literally. Maybe all those side effects have been worth it.
Not just to see Paul in a silly hat and gown and to hug this kid who is now considerably larger than me. But to have seen the videos he wrote, produced and starred in. His performances in the university’s orchestra. His writing for the satirical newspaper he created. Even to watch him cook himself a healthy meal. (I mean he recently asked me to get kale at the grocery store. I was sure he was going to say ice cream.) I am even pleased the car that I very reluctantly let him take to school in his sophomore year is still looking pretty good, except for some extra junk in the back seat. (The first five conversations about him taking the car to school began with me declaring, “Absolutely not!”) In this blog I highlight all the discomfort, pain and side effects of my cancer and treatment. And many days, weeks, months they dominate my life. They also make me forget the reason that I am doing the treatment: To be with my family. I was able to fly to Berkeley for my daughter’s graduation (and her surprise gift to me of a ride on a Segway) two years ago. I was able to help -- or watch -- her move into a Brooklyn apartment this spring. I was there for my wife when she had her terrible accident and helped nurse her back to the Energizer Bunny we had known. Even lesser moments are worth it, like this past Mother’s Day when we threw her a series of surprises that lasted the entire day. There are more good moments coming. There are the two Yankee games my daughter has paid for this summer, and I am determined to spend some time at a horse track. There’s a long car ride planned to see family, there are the friends who have a house in the Rockaways, and a Jersey Shore beach house waiting for me this summer. So life goes on, good and bad. Sometimes you have to be sure to celebrate the good.
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I kept telling myself, “Your daughter has a tattoo.” That was to keep myself from saying “ouch” as the radiologist went about making 18 tattoo dots on my body with all the delicacy of Rosie the Riveter. The dots are meant to align radiation beams at the cancer that has spread to my spine and left hip. Everything has to be precise. I’ve had more needles stuck in my body over the past decade than your grandmother’s pin cushion, so needles don’t bother me. Usually. But these were sharper, deeper needles it seemed. I felt my face contort a bit during the punctures along my sides by my ribs. But I couldn’t complain out loud. I mean, I also have two nieces and a sister-in-law with tattoos. And those involved a lot more than 18 pricks. The last prick, however, got me. It was on my right thigh and Rosie seemed to linger a bit with the needle in my leg and maybe waggled it a tad. “Owww, that one hurt,” I said as she withdrew the needle. No apology. Or acknowledgement. Maybe she was sparing me the humiliation of being told I was a weenie. Later I asked my daughter if she let go with an “ow” during her inking. She thought a bit and said it was “uncomfortable,” but she couldn’t remember if she had let one rip. I think if she did, she would have remembered it. But maybe not told me. --- Lying on the table nearly naked with my arms over my head, I was told to not move. The radiologists would be in the other room and would be able to see and hear me as they twirled a large machine around the cot I was lying on to zap the cancer in my spine and hip. As they left they sternly warned me, “Don’t move.” It’s remarkable how the words “don’t move” can trigger a half dozen spots on your face that want to be scratched. Playing softly in the background was some old rock ‘n roll. I had to concentrate to hear it. I knew I would be in this position for a while. And I couldn’t scratch my nose. “Turn up the music,” I yelled, probably louder than necessary. The volume went up a little. “More. Crank it up… That’s good.” This time I really did have to yell over the music. -- Try lying on your back with your head on a pillow. Raise your hands over your head and lie them on the cot as flat as you can. Grab hold of a wrist to help keep your arms in place. Now stay like that for forty minutes with a radiologist warning you every once in a while, “Don’t move.” Having done it a couple times I get impatient with the preparation. The radiologists must line up my tattoo dots with two fine red lights that run like an X through the large room where the radiation takes place. I lie on the mechanical cot, my hospital gown pulled away from me with a cloth barely covering my groin. At least one of the dots is in that area and must be visible to the techs. There is one person on each side of me. They peer closely, using flashlights in the dark room to line up the dots with the red beams. The one on the right tugs me closer to him by pulling on the sheet beneath me. Too much, the other says, and tugs a little back. They pull further in the direction of my head. They move a leg a fraction of an inch. With buttons somewhere on the mechanical cot, they move it left, right, up or down with little “tunks.” Sometimes as they hover over me, the red beams are laced cross their faces, the straight red line bent around a nose, over lips or a cheek bone. The shoulders are beginning to ache, but I can think of other things and ignore it. The techs may leave the room and go to their controls in an adjacent area, but have second thoughts and come hurrying back in for more tugs, a slight repositioning of a leg. Now the shoulders are starting to object more forcefully. “Don’t move.” Please get it aligned quickly, I’m thinking. All that is to take an X-ray, which they must show to the doctor. “Don’t move,” they insist, because if the doctor approves of what she is seeing on the X-ray, I must be in the exact same position for the radiation. “Here we go,” one finally says in a cheerful voice. “Don’t move.” “How much longer?” I ask. It is a plea for efficiency and speed. My shoulders are screaming. I’m trying to think of other things, but the shoulders are now pretty insistent. Finally, they are done and I can move my arms, raising them slowly and carefully over my head, bringing them back to my chest. It’s a painful relief, but relief nonetheless. -- Relief is on the way they tell me. I’ve completed a week of daily radiation. I have one more week to go. But no matter how achy tired and listless I am during the day -- radiation has that effect -- I can’t sleep at night. I have found two positions in which the back does not hurt, but I can’t find a pose that relieves the hip. Around one or two a.m., I get back out of bed, step over the sleeping dog and go downstairs. Every light on the block is off. I can hear neighbors’ air conditioning units humming. I turn on a light in the corner of the living room and pick up my book, “The Handmaid’s Tale.” The doctor told me I should feel relief in my back in the next few days. The hip may not feel better until after all the treatments are over. Sitting in the lit corner of my house, the only speck of interior light on the block, I am hoping she is right. The hip is making walking arduous. The idea of walking to the train, which I’ve done for nearly 20 years, now sounds like a trek. But right now I’d settle for enough relief to get a night’s sleep. Next up is radiation. I think my dog will benefit greatly. Since the cancer has moved into my spine and hip area, it has been causing discomfort there. The plan is to radiate the spine and hip, killing off some of the cancer cells and relieve the pain. I may even get a new set of tattoos, black dots that help the radiation techs line up a protective shield on me while they fry other parts of my body. I have several of these tats from an earlier radiation regimen and I’m hoping I can use them for some sort of connect-the-dots pattern. What is prompting the radiation is a particularly uncomfortable spine. Bending over is a slow motion thing now and getting back up requires me to put my hands on my knees for a slight push, then move my hands to mid-thigh for another boost, and then to the top of my thighs to become upright again. Picking up something while I’m down there is a delicate matter. When my back is about one-third of the way back up there is a leverage point if I’m holding any weight in which the spine starts flashing warning signals. This complicates lots of daily moments for me, but it’s the dog that is going to most appreciate any relief radiation is expected to bring. The dog, when not groomed, looks like an Ewok. She is a small pooch, but Roxy has slowed with age and now waddles like a fat raccoon. Boxy Roxy is her nickname, which implies how heavy she has become. It is too difficult for me to get down on the floor with her (or too difficult to get back up) which I’ve liked to do with my dogs since I was a kid. I think we both miss that. I also can’t pick up her zoftig form to get her up the stairs at bedtime. When I do have to get her up the steps, I carry her bent over until I’m a few steps from the top. I lean forward so that Rox’s front paws can make contact with the top step. She walks a couple steps while I still am holding the back end. At some point, she hops out of my hands and regains her dignity. If I have to take her off the bed in the morning, I find that partway towards depositing her on the floor, my back reaches its limit. At this point, the dog is still about a foot above the hardwood, and as she hangs there she senses a problem. Her legs spread out, toenails extend, and her tail starts making nervous circular motions like a busted propeller. Eventually, I apologize and just drop her. Getting her on the couch, which used to be an easy leap for her, requires me to hoist her off the ground, shuffle forward to the couch bent over (because I can’t straighten up with her weight in my hands) until her front paws can climb on, and I then push her butt onto the cushion. We do it this way when no one is watching. Rox and I are both hoping that radiation will improve the quality of our lives. My friend John stood up and took his first steps in nearly a year. It was a short stroll between two support rails, but he could have kept on going. (You can watch John walk here: https://www.facebook.com/search/top/?q=john%20a.%20oswald) If you follow this blog, you will remember that John’s leg was amputated below the knee in March due to a rare bone condition known as Charcot Joint. But the last time he walked had been in June. His hospital recovery was marked by a buoyant cheerfulness as he greeted visitors with a waggle of his bandaged stump while holding court with friends. That upbeat mood masked a struggle to stay optimistic as he dealt with the loss of his leg as well as mundane issues like work and rent. During this time, John and I have been a mini support group for each other, applauding each other for enduring as he dealt with his leg and I with cancer. John had been uncertain about this day. It had been a long time since he was upright. Anticipation kept him awake the night before. But then he killed it. He made the walk look easy. At the end, John took his hands off the side rails. “All right, show off,” the therapist said and told John to put his hands back on the rails. John obeyed, briefly, and stood on his own again. Sitting in his wheelchair later, John said he wished he could have walked a few more times. He even eyed the practice stairs and wished he could have tried them too. His handlers, however, said many patients don’t take any steps on the day they first put on the prosthesis. But since his stump had changed and slimmed down since it was originally made, they didn’t want him walking in an ill-fitting socket and called it day for walking. They promptly made a mold for a new and better fitting prosthesis. Later, as he moved easily from the wheelchair into a taxi, John was clearly triumphant. He knew he could do this now. But he was also still dogged at moments by the self-critical thought, “How did I get to this place.” But “this place” is a remarkable milestone of perseverance. There was another surprise feeling for John. After having a point of view of a five-footer for much of the last year since he was seated all that time, being suddenly elevated to six-foot-two was disorienting. “Everything down there seems so far away….It’s almost like having vertigo,” he said. “You look so small,” he said seriously, looking at me. I’ve been told that before, I replied. I have developed a reputation during my decades as a journalist and grump, but it’s not something that I find is very useful to me now.
In the many complimentary letters and notes I’ve received since I announced my prognosis (I feel at times like Tom Sawyer in the choir happily listening to his own eulogy) I am occasionally reminded of that reputation. Kevin Flynn worked in Room 9 (the City Hall press room) at the same time I did eons ago when I was still drinking coffee. He sent me a commiserating note that included this: "I hope you are still yelling at everyone once in a while. i always loved it when you yelled at someone." Yikes. And Anthony Castellano commented after I mentioned a post-chemo ‘roid rage aimed at a motorist who hesitated at an intersection: “I would have paid good money to see Mark Mooney curse out that poor son of a bitch in the intersection.” Anthony and I worked together long after I began drinking decaf, so maybe caffeine wasn’t the problem. My voice has been heard over the din of Yankee Stadium when a player has disappointed me. And my wife and kids have watched me threaten numerous machines with the idea that even if my immediate tirade doesn’t produce the desired effect, other nearby devices might be intimidated into behaving. Needless to say, you don’t want to be the person or computer who robo calls me. But I don’t know how to roar at cancer. Or the meds. It seems the only thing I can do is sullenly surrender to yet another needle, another hospital gown, yet one or two more scans. I am always struck by those obits that say the deceased “battled cancer.” I suppose there is a war of wills for some people, but I don’t feel like I am fighting back. I am enduring. I am taking my meds, gritting through the side effects, and usually hiding from people because I’m tired -- physically tired and tired of thinking, talking and writing about this. What I would give to do real battle, to have a heavy wrench and just hammer on this disease, or take a bat to the side effects. Or at least have it rise up in front of me in some shape so I could curse it into submission. It has been suggested to me that maybe a whispered prayer might do more good. But then there is the danger of a side effect -- whiplash. |