Vincent and I are sitting in a room of Dr. Lin’s office in the Radiation Oncology Department of Lutheran Hospital. Dr. Lin has been a part of this since the first tumor was removed. I trust her more than most doctors on his case. She has never given a sense of false hope. In fact, she was pleased with Vincent’s progress the last time we saw her, telling us to schedule when needed. She never gave the “out-of-the-woods” syndrome that many doctors portray. I want hope, but not false hope. She and Dr. Kachmann have always given it directly. While they are at odds in dealing with his pain, they both look at the body as a whole—the mind must be receptive as well, or treatments will be defeated. I see her as the person who wouldn’t lie to me, not even if to make my worry disappear. I watched her in action when she met my son for the first time. She included me, the family members who wished to be there, and friends of Vincent’s or mine. Dr. Lin made us part of the healing process.
I process this, all again, just as I did right after I was told the tumor was back for a third time, back three months after his last surgery in June. If I’m honest with myself, my mind has never stopped since the news after his last MRI done at IU Methodist in Indy. Should I watch him deteriorate from the disease as the tumor swells, filling in the cavity left in his skull from the first and second surgery and the burning out of cells from the first round of radiation, in hopes he will make it to Christmas? Or, should I allow the second round of radiation to keep him longer, maybe another six months, maybe a year, without any little hint of it being my son in that body? His body cannot withstand the chemotherapy that battles this cancer. I know this tumor will be death size in three months. I know radiation will destroy his brain as well. Is keeping him alive longer worth it when he doesn’t know life exists? This is a last ditch effort of hoping a miracle will come before there is no more to be done. Right now, it is everything I can do not to cry. The lump is in my throat, and my belly feels those moths stirring—not butterflies, I cannot say butterflies. This isn’t a good place to be. I’m tired of last ditch efforts.
SHOULD I WATCH HIM DETERIORATE FROM THE DISEASE AS THE TUMOR SWELLS… OR, SHOULD I ALLOW THE SECOND ROUND OF RADIATION TO KEEP HIM LONGER… WITHOUT ANY LITTLE HINT OF IT BEING MY SON IN THAT BODY?
Dr. Lin comes in with Vincent’s large file that carries every procedure and doctors’ notes and MRIs and anything else that has ever been done to him since October of 2010. My fingers ache at the thought of picking the file up—my strength had left them the day I heard cancer. This massive file looks like a hardback, large sized Catholic Bible, or James Joyce’s Ulysses. I listen to the doctor. So does my son. She is stressing to us that we should not proceed. I ask questions—“what if,” “can this happen,” “how much more time”—and repeat what she says to me. She is patient with me as I rehash what she has said with new questions arising, or I rephrase a question to make sure my question is understood. Sometimes my education leads to a lengthy procedure in evaluation and analysis. No, I don’t understand medical terminology and the theories, but I do understand the choices of word groupings and the choices of words used. Sometimes there is a clue to what someone might not be saying, an underlying truth that the doctor fears to let us know, maybe a hidden hope that is very remote, and she doesn’t want us to get our hopes up too much. I can’t find one. The stress in her voice is plenty to say: “Don’t go forward.”
My mind can’t go forward thinking about him not existing. I remember thinking “forward” after the preparations for radiation the first time. Small dots tattooed on his body to situate him correctly on the table where radiation would be directly projected specifically to the areas of the body instead of the overall body. I teased Vincent, telling him how he could get the dots connected using tribal tattoos. He has three tattoos on him already. Radiation treatments added five small, almost invisible, dots. There’s a dot on his forehead, one on his chest, another below his belly button, and one on each forearm. If the dots are mapped out, it’s a perfect cross. I remember the red laser lights matching up to those dots, his body maneuvered by techs till he was just right, aligned perfectly. Sometimes it would take only a few minutes, but other times longer depending on how his muscles were responding or how much fluid he was retaining. This round would bring new tattoos dotted on him, and a new facemask, which reminded me of a cage built to model the body, except this was for his head only, to help keep it in place. He has never been afraid of tight, small areas—at least that I know.
When we walked into the office, I was going to say no treatment. I am tired. There is too much pain that has developed through this cancer. I want this to be all over. I feel guilty for wanting this. I want it to end, not only for me, but for Vincent, for my daughters, Jessica and Ginet, for my other son, David, and, yes, for my ex, Garry. I’ve already seen two aunts die of cancer one year and six months after my son was diagnosed. I have spoken to my fiancé, Chris, considerably about these feelings. He has an understanding that comforts me. He knows what it is like to make these choices. He tells me over and over, “Do not apologize for how you feel.” I let this feeling burn through me. I feel the pain of the choice, I feel the panic of the choice (or is it anxiety), and the pain of being the stronger person to make this choice (or maybe the weaker—I don’t know. This has been a continuous horror for two years). I know this must end. Still...
Still, this is my child I’m talking about, a child who hasn’t experienced life enough to decide if it was all worth it. I see things from the past as if it is happening right now: him with Chloe on Father’s Day before his cancer was found. She is clinging to her father. Now, I see the fear in her eyes because she doesn’t understand why Daddy is like this. He is a stranger to her. She knows it’s her daddy, but it isn’t Daddy. I had hope for him to become active again, wanting much for him, wanting him to experience being a father to his little girl, right through her teenage years. How does a person explain to a child a parent is going away forever, and it isn’t the parent’s choice? Will Chloe remember her father as he was or as he is now? Is it better to let him go? I know it is, for us all.
THERE IS TOO MUCH PAIN THAT HAS DEVELOPED THROUGH THIS CANCER. I WANT THIS TO BE ALL OVER. I FEEL GUILTY FOR WANTING THIS.
I hear, deep back in my mind, Jessica and Garry’s voices wanting Vincent to have the radiation. I ask one last question: “What are the percentages of having a little longer to live without being a vegetable for the rest of the fight?” There’s a slight variable of good results that I’m willing to take a step forward but only if the results do not begin to play heavily on his life he currently has now, especially his mind. Have I let myself down? Have I been lying to myself? I do want him to live. I know the numbers—no survivors past five years. Not only has he fought cancer, he never fully recovered from a stroke after the first surgery. His brain was swollen before the surgery; the biopsy caused more than his brain could withstand, sending him back to surgery to take all that could be taken—even part of his front left lobe—to give the brain room to swell. He was without part of his skull for three months. He was in a coma for a month. (I never knew that when in a coma, a patient wakes up, looks at you, speaks to you, moves about, and can feel pain, but the mind doesn’t remember. It was painful to watch him responding to the nurses and me as if life was normal but have no real clue, the same ritual repeated over and over. When he finally became aware, he didn’t remember the last six years of his life, not even Chloe, who was 2 ½. I want him to live more than ever, if only for her. How much more can his brain take: not only his brain but his overall body?
I had dreams—like the rest of the family—that Vincent would return to his joking, to his hunting and fishing, to his wild adventures of partying and dancing, back to having fun. Vincent was always the man of the hour to break the tension with a joke, even when I was terribly mad at him, to the point I was ready to beat him. He would look at me, “I love you, Mom,” his eyes downcast. He never made a pouty face, just made his eyes look sad. His cheeks would even become sad—those high cheekbones of his, drooping like mud. The one time I recall him turning the tide to make me laugh was when I was incredibly irate with him because he refused to clean the living room floor of the debris. I had to write a poem about it:
“pick up the floor.”
I tilt my head,
“Iiii caaaaan’t,” whines
those sly letters
off my palate.
I shrug. “The floor
is too heavy,” smirking under
my now rolled eyes. Mom’s back
draft of guttural sounds
at my back.
then she huffs big bad wolf,
to bring hardest puff
and I whisper “breathe.”
This part of Vincent is gone, mostly. He could find the humor in things but not express it. His words locked up behind torn up bridges called synapses. I hold onto that hope a little longer, just a little longer, and pray, “Send a miracle.”
It is now week three into radiation. His gross motor skills are severely hampered. What speech he had in the way of full sentences has deteriorated. The ability to find the word he wants has become harder. I can’t stand to see this. More than guilt strikes me as I think through this all. Whose horror is worse—him living through it like a shadow or me watching him live? Since my son doesn’t live with me at this time, I notice the differences immediately, unlike his father. It is time to talk to Dr. Lin again. Before she comes in, I have spoken to my son, told him what I thought, and asked if he accepted that nothing else could be done. I watch his face, hoping to get a glance of Vincent still in there, somewhere. I don’t know if he understands. Three weeks ago, Dr. Lin said he couldn't comprehend well, not enough to make any decisions. I don’t want to believe her because it is important to me that he agrees, that he makes this decision as well. He does give that little smile he used to give when he knew he had no choice. He is getting it, slowly. When I ask, “Are you tired of fighting?” I see only a blank slate. I keep rambling, wanting more from him, something from him to take away this guilt I feel, the guilt of killing him.
I FEEL THE PAIN OF THE CHOICE, I FEEL THE PANIC OF THE CHOICE (OR IS IT ANXIETY), AND THE PAIN OF BEING THE STRONGER PERSON TO MAKE THIS CHOICE (OR MAYBE THE WEAKER).
At this point, I’m sure there will be no more treatments. I have mentioned this to Garry, who is upset with me for just mentioning it. Him, nor Jessica, have faced the truth that the end is nearing. Ginny won’t speak to me at all. Their reluctance doesn’t make my task easier, nor have they ever made it easier for me to make the final decisions. I keep telling myself, I’m doing this for Vincent, and I’m doing this for all of us. It was only an excuse to avoid the inevitable: there isn’t a miracle. Dr. Lin has been on the same page with me since this second round of radiation has started, even though I fought what I knew must be done. I fight with the emotional turmoil of what Jessica and Garry will say. I know both find me guilty of “getting Vincent out of my hair.” I desperately want to end everyone’s pain, just not my own. After speaking with Dr. Lin, it has been settled. We agree that more will be taken from Vincent if treatments continue than to allow the tumor to run its course.
I keep my tears under control until I get back to my parents, climb the stairs into the room I’ve been staying in, where Chris waits for me. My strength is gone. I feel: I let it run through me; I let it take over for the rest of the day; I face it; I pick up the rest of me the best I can the next day, and live, and watch, and wait.
When we decided to publish this work, we corresponded by email with the author, Dawn Cunningham. She graciously shared a photo of her and Vincent, as well as Vincent and his daughter. Here is what she said:
“I wanted to show him with me during his illness towards the end. This is from November 2012. He died in Mar 2013. There is also a photo of him with his daughter from Christmas 2009—before he was found with cancer in September 2010.
You can see the scar just above his forehead, where he was opened up four times (once for a biopsy, once to take some of his left lobe and most of the tumor, one to replace his bone flap (which went flap and had a titanium mesh put in), and his last surgery to remove more tumor that had moved to the central brain stem.
I have my moments. His birthday was the 20th of this month. Since I began celebrating his birthday, this time of year goes much better. My hardest times are Halloween, his favorite holiday, during the months of February through March, and Mother's Day (he would pester me to no end on Mother's Day). Sadly, I didn't get to celebrate his birthday this last weekend. I plan to this coming weekend, all alone again while doing it.”