How I'm Adjusting to My Husband’s Cancer Prognosis
The following story contains discussions of death and could be potentially triggering.
“I am an awful wife and a terrible person!”
I have been telling myself this ever since we got the phone call. The one we’ve been dreading since the day my husband was diagnosed with heptacellular carcenoma (HCC), liver cancer. The one that we expected eventually but still stunned me when it came.
For the last five years, I have stood by my husband’s side as he has undergone tests, scans, and invasive treatments; swallowed medications; battled nausea, pain, fatigue, hair, and weight loss; and accumulated more doctors and prescriptions than many people do in their lifetime. HCC is incurable, and we were informed early on that it would likely eventually kill him, as he was not a candidate for a transplant. So, all these treatments and medications were an effort not to eliminate the cancer invading his liver, but to keep it at bay for as long as possible.
We knew it couldn’t last forever. My husband’s liver was a battleground: chemo vs. cancer cells. We understood that new tumors were appearing as quickly as the treated tumors were shrinking, and that eventually the cancer would win the war. My husband seems to have come to terms with that, because when the oncologist told us that the cancer had spread to his lungs and that he had less than a year of life remaining, he took it calmly.
Hanging up the phone, he said casually, “Well, it’s official, I’ll be dead by next Christmas.”
I didn’t respond. I felt nothing, blank, like someone had suddenly flipped the emotion switch to “off.”
“So, we better make the best of this one, huh?” he said, grinning.
His cavalier attitude irritated me, but I still didn’t respond. My mind was revving up now, beginning to form a list of things that now needed doing: research palliative care, have our wills drawn up, plan our finances, arrange a new home for his cat for when he passes….
“What’s wrong?” he asked, “We knew this was coming.”
What’s wrong? My mind repeated the question. A jumble of worries and fears tumbled through my head. I’m going to be a widow at 50. We had no children, and I’m going to be alone. I am losing my greatest supporter, my life companion, the person who helps me navigate life with disability. What about the extended medical and dental insurance from your employment that I rely on? How will we afford the medications and care you will need if they’re not covered? How will I cope? What will become of me without you?
“OMG, Jennifer, you’re such an asshole!,” I chastised myself. Why was I I being so cold? And so selfish! This is not about me. I’m not the one who’s dying. I should be upset, shouldn’t I? Crying even. I should be feeling compassion and empathy for my life partner, not worrying about myself. What’s wrong with me?!
As I continue to navigate my own existence with disability, chronic pain, mental illness, and all the average concerns that come with adulthood, I am now faced with fear and worry about a future without the partner I expected to grow old with. I find myself constantly preoccupied with practical issues, and common daily situations invoke new concerns for the future: I should have the repairs done on my wheelchair before I no longer have my husband’s insurance… and that root canal before dental insurance is gone. How will I get the gardening done without him. How will I clear out his apartment when he passes…
I feel disgusted with myself, callous, and self-centered, the kind of person I strive not to be. Ordinarily, I am highly empathetic, and often pick up on the emotional state of those around me. I cry at animal welfare commercials, and stories about people unnecessarily suffering break my heart. Why am I so emotionless about this? Why am I so focused on the practical?
Occasionally, late at night, when I’m lying on my back in bed in the darkness, listening to the soft whooshing of my BiPAP machine, and watching the faint green reflection of the flashing crosswalk signal on my wall, the tears finally flow. In the silence, with the relaxing of my body, comes a rush of emotions held at bay by the stoicism that lives in me during the daylight hours. Images of my suffering husband float in the darkness behind my eyes, and fears for his future tumble through my head. I can’t stand the thought of him languishing in hospice, wracked with pain, plagued by depression, and too weak to care anymore. I squeeze my eyes shut tighter, trying to block the images and the worry that clings to them. Tears leak from the corners of my eyes, run down my cheeks, and drip into my ears. Sometimes it’s hours before my exhausted mind succumbs to sleep. When morning arrives and I open my eyes to the light of day, it feels like my emotion switch has once again been flipped to “off,” as I step back onto the hamster wheel of the business of living.
I’ve been told several times that this involuntary stoicism and seeming lack of emotion is actually quite normal. It may be a way of trying to gain some control of a situation that is mostly beyond my control, to plan for the future in the face of uncertainty. It may be a protective mechanism as I learn to cope with the realities and implications of the situation. It may be a coping mechanism to preserve my energy and focus so I can better support my husband. I understand the reasoning, and I feel better knowing that I’m not the only one feeling this way. But it still feels awful, like I have been failing my partner on a fundamental level.
Then the other day, as my husband and I were talking about his prognosis, I tentatively broached the subject of his employment and long-term disability status. I suggested that he call Human Resources to ask questions about what happens from here on and after he passes. He agreed. Feeling guilty, I began apologizing for “being so cold and business-like,” reassuring him that I am not trying to be selfish.
“It’s OK, babe. I know you’re not,” he interrupted. “You gotta think about what you’re gonna do when I’m gone.”
Immediately, my shoulders relaxed and the knot in my belly loosened. It’s like I just received permission to feel the way I feel (or not feel), without shame. My heart swelled for him. He stood by me through the worst experience of my life, and has been there for me as I’ve navigated life with disability for years. I wanted so badly to do the same for him in return. I wanted to help make his journey as peaceful and comfortable as possible.
We continued to discuss doctor’s appointments, finances, prescriptions, and all manner of practical issues. When we were done, my husband leaned back and sighed.
“Thanks for taking care of those things, babe. I just don’t have the energy. I can’t think clearly anymore.”
A slow realization dawned on me. I have been doing those things I want to do already, and have been for some time. My husband’s love language is about sharing your skills and giving what you are able to help someone else’s life go a little bit smoother. During the past decade, he has shared his love with me by (among other things) completing the tasks and running the errands I am unable to because of disability. I, in turn, have managed all the more cerebral affairs, such as budget, taxes, insurance, bills, etc., even though, due to my personal care needs, we don’t reside together. Lately, because my husband experiences severe fatigue, memory loss, and brain fog, I have been organizing and reminding him of appointments, keeping track of his medications, noting his care needs, researching supports, etc. These tasks are easy for me, and he has expressed many times how helpful it is.
I’m beginning to understand now that perhaps I’m not the cool and callous person I’ve been accusing myself of being. Perhaps I’m simply coping and grieving in a way that feels safe and in control as my husband and I face a future that feels chaotic and uncertain. I feel much better knowing that I am making my partner’s life easier by taking care of the things he struggles with, and supporting him in the best ways I can.
As I allow myself, without shame, to ponder those “self-indulgent” questions about my future, I am noticing a shift. It’s like the pressure to figure it all out has eased, and there is more room for emotion and genuine displays of affection. I think I’m slowly finding a balance, and this helps me feel calmer. At the end of the day, all I really want is to cherish the time I have left with my sweetheart, and make sure he knows he is loved.
Getty image by PixelsEffect