My Wife Has Cancer - A Husband and Caregiver's Story

by "Gumpus61"

Tears 

Someone said when you’re falling in or out of love every song on the radio is about you. The Same is true of the cancer experience. Most everyone, at some awful or wonderful way point, relates that moment to a song. 

My Wife Has Cancer   A Husband And Caregiver's Story

My wife is dying of cancer and there is not a damn thing I can do about it. We husbands of cancer cry often, and with deep feeling, but more often alone than with our wives….and right at that moment I sat in Traffic and was the loneliest man in the world. If when sitting at a stop light you see the guy in the car next to you crying……..His wife has cancer. We don’t keep those tears from wives for selfish reasons. At some point, you realize that the household reflects your mood, not the patients. That the glued on smile is what everyone expects. A husband's misery is best kept to himself lest it be thought of as selfish. So I cry in the car or while I’m mowing the grass….and every now and then with my wife who has cancer. 

Before Cancer

We met in a bar in 1979. We both lived in Missouri but had crossed the river to Illinois where the drinking age was younger. It was late in the evening or early in the morning when we caught each other’s eyes. Various lies were told but a lunch date was made for the next day. Ann was just 18 and I was 21.

She was striking. Tall, with long legs, high cheekbones, and green eyes to die for. We dated hard and fast. We loved walking the Mississippi looking for the kind of treasure that fetches up on the banks of rivers. That’s where I first told her I loved her. We Married in January of 1981. A pregnancy followed and Ann and I had our first of too many fast drives to the hospital.

We miscarried twins at 6 months. Diagnosed with an incompetent cervix, Ann and I sought out the best place we could find for a premature baby. That led us to Michigan. The University of Michigan delivered us a 2 lb 4-ounce son after another fast drive to the hospital and a prolapsed umbilical. Our first miracle, our son Marshall made it after a long stay. Another son did not survive and our baby days were behind us. 

We were hard workers. I was always tied to Detroit in some way. Ann followed a meteoric rise from a customer service agent with Northwest Airlines all the way to the headquarters of U.S. Airways in Phoenix. We loved our lives. The commutes were on airplanes, but the hello’s and goodbyes were great. Ann and I were as happy as we could be 33 years into our marriage. 

Diagnosis 

Our cancer journey started on a Sunday, In October 2013. Ann was flying back to Phoenix from our home in Detroit. She was trying to hang on to the job she loved in the middle of a merger of airlines. Ann woke up with that day with abdominal pain. Not a first for us, premature babies and kidney stones had seen us hurry to a hospital before. 

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In the first of many guilty feelings to follow I felt a bit put out….she would miss her flight, I would miss the game. Ann had been symptomatic for most of the summer. The horror of her cancer is that the symptoms by themselves are fairly benign. Gas, bloating, and diarrhea are the warning signs, who doesn’t have that?

The doctor in the ER did some palpitations and ordered up an X-ray thinking appendicitis. An hour later the doctor entered the room and closed the door behind her. My heart started racing, I knew it had to be bad. I had seen the look before when a doctor told us our premature child was “very sick”....a code word for dying. 

But true to some strange dance the medical profession engages in….she didn’t say cancer. There was a mass near hear intestine…...she pointed just under Ann’s rib cage on her right side. A cat scan was ordered for the morning and we checked into the hospital. The next day was a mess, tests were set up and missed, departments weren’t talking. Questions were met with vague answers. 

We hit the cat scan late in the day……..the technician was doing some kind of targeting….he was not near where we were told the mass was. When Ann questioned him he rocked our world…..”You have tumors all over the place”....he may have even used the word cancer. The Cat was out of the bag. I wasn’t even in the room. Ann came out ashen and in shock. I was furious, things went out of control. More appointments, more confusion….shock…..not enough answers. No straight Answers. Downcast eyes from staff. 

Ann just wanted to go home. Experience with death and hard decisions had taught me something of value. I knew doctors were human, that some hospitals are better than others. We weren’t the only people feeling shocked, disorganized, and confused…..the hospital vibe was the same. For the first time, I felt the responsibility of a caregiver. 

I “fired” the hospital. Without knowing just how much cancer she had, where it was at, or how serious it was…...we got assurances she was in no immediate danger and walked out the door. I called my personal doctor, within hours Ann was in one of the best hospitals working with one of the best possible doctors. More tests, biopsy and a wait for the answers. 

Ann went back to work to find her job had been eliminated. My father died of his own cancer…..and ten days later we sat down to hear our verdict. Ann has a rare cancer called Primary Peritoneal Cancer. The peritoneum is a large sheath of tissue holding the organs in place and covering a lot of territory in your midsection. It is loaded with blood vessels and lymph nodes, cancer there spreads very rapidly, diagnosis is usually after the cancer is well developed. Ann was a stage 3C. At no time did a medical professional describe awful prognosis for this disease. It fell to going home and searching the internet to find those awful words. “Uniformly Fatal”

I had that terrible realization. My wife has a disease you can treat but cannot cure, that there is no cutting out. That it is in her at a microscopic level and it’s always coming back….always coming back. I had no idea what was coming, It is an unnatural state of being knowing you have what’s going to kill you…...just not when. I’ll never forget hearing the words….and watching a single lonely tear leave Ann’s eyes, just one terrible lonely tear.

Treatment 

My beautiful wife seemed broken, Her career blown up and a terrible battle ahead with this insidious disease. We packed up her apartment and in bittersweet moments left her career behind and came home to Michigan to begin the battle. Peritoneal cancer is treated the same way as ovarian cancer. You can study the charts, Ann could be dead in 12 months or 24…..some make it past 4 years….almost nobody gets past 5 or 6. The treatment is designed to kill the cancer faster than the treatment kills you….it’s a horrible balancing act. Nobody tells you that. Nobody tells you your sex life is over, that you doing the dishes just makes her mad, that denial is a good thing, that your friends will never understand, that you can’t be honest anymore, about most anything. 

Ann attacked her treatment with a will…..and like everyone does, did not think the symptoms of chemo would be as bad for her, they were. We had the bottle of wine, cut off the hair moment. We tried wigs but landed on scarves and goofy hats. Ann was a good patient. The chemo was brutal. She couldn’t get off the couch. For a husband, the realization sets in. You have to do it all…...dishes, laundry, yard, pool. Your wife will resent not being able to help. She doesn’t want you to have to do those things and you are not enjoying them. She stews and feels helpless, you wash the dishes with a grimace. It sucks. After 90 days or so it really starts to sink in…...this could go on for a while. 

Cancer: the gift that keeps on giving. For your buddies, cancer is tough. Guys will give you the “is it worth the pain?” or “ I would go off to the woods”......they don’t understand at all. You can’t tell people it’s going to kill her…..that brands you in a certain way. As if you would deny a miracle to be right in saying what is going to happen. A Husband hopes too, but we have to keep going when it’s over, practice what we are going to say at your funeral. Wonder if there will be any money left. A husband has Cancer just as surely as his wife does. It fills your house. It never leaves your side. It sucks. 

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So you get a little cycle going. Chemo and a slow recovery till the next one, each one worse than the last. Friends stop coming around so often, who can blame them. Then finally on a good day…….you get the wife out of the house. The lady at the clothing store hugs her, she realizes she is not alone really…...Nobody hugs you. Our first blessing came after blood work showing that the chemo was working, Ann is chemo sensitive, the cancer dies faster than she does…..but barely. Surgery gets all the visible disease along with every organ they could cut out and still have her breathing. 

Just as we roll into spring the amazing call comes………..PET scan is clear, no evidence of disease, (NED). Ever hopeful, Ann decides she has won. I know better, but that is my terrible secret. She gets stronger, her hair comes back thick and full……...she returns to work, It’s not the same job but it’s something. 

Living with Cancer 

Then another blessing. The job she wanted at headquarters in Dallas is offered to her. She is like the old Ann for awhile. We get her an apartment within walking distance of the office in Dallas. We're commuting again. The job is fast paced, the chemo has taken its toll, the hysterectomy has changed her. There is frustration. But she got to that mountain top…...for about 6 months, and the Cancer returned with a vengeance. 

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Another retreat. More tears…...more acceptance and denial in equal parts We were now approaching year two and back on the chemo bus. sleep is her only real refuge. The wonder of our eyes is we don’t see ourselves…..I hear Ann crying when in front of the mirror. I see the cancer in her face and it breaks my heart, the color in her eyes slowly going flat. I have learned to look at the whole experience as some kind of test I am resolved to pass….and that makes me feel guilty too. 

Friends who were never told it was a fatal disease are beginning to figure out it’s not going away for good. I have gained 15 pounds until my doctor says…….”You aren’t the one dying”. But I feel like I am. The same cycle of pain that is chemo begins again, and again the cancer retreats. But more slowly this time. The word cumulative has meaning now……...every recovery shorter than the last. 

My wife was always proud of her appearance, she never left the house without looking like a million. Now the cancer has really taken its toll. She doesn’t want me to see her naked. She doesn’t even think of sex anymore. We have a few moments, but they are a struggle for her. I still find her attractive and sexual, but for her, it is gone. Temptation rears its head and at the same time no woman wants the guilt of sleeping with a man in such circumstances. 

I am only 57 years old. We limped into 2015 about as beaten as two tough kids can be. But the cancer retreats until Ann goes allergic to the platinum therapy which has been so effective. Another PET scan shows us clean and it looks like another summer for us. Ann gets work again in Detroit. She just isn’t up to the fast pace anymore, it’s more frustrating than rewarding. But Ann is proud. 

We buy a trailer and get a beautiful spot in upstate New York…...It becomes Ann’s happy place. Remember last Fall’s huge harvest moon? We were at the lake that evening……...coming up on the end of that second recovery, we knew the next test would have us back in the battle a third time. That huge moon rose over the lake and its reflection crossed the lake to our feet. I knew that moment was probably the happiest we might ever have again, I wished I could have let her pass right then. I sob from the guilt, alone in the car.

What Next 

Anns cancer returned again in October, we are in year three of living with Cancer. We are on a secondary treatment now. The cancer is retreating slower now and will come back faster. When we were first diagnosed I would say “cancer won’t kill her today, this month, or this year” It’s the kind of pablum people come to expect of you. I live in wonder of Ann’s ability to live in healthy denial. The cure that has been 20 years coming could arrive. I know short of a miracle we will be lucky to live another 18 months. Ann has beaten the odds so far, who knows really? 

We are looking forward to next summer….Our chemo ends in April. We have good days and nights. We managed her treatment around the Holidays and they were great. We find special moments, but they are clouded a bit with the melancholy of thinking there aren’t so many more. You don’t want to do anything for the last time.

There is no manual for Husbands of cancer, we are left to find our own way. It is a horrible unnatural burden and I know some men and marriages don’t survive. My wife is a private person and too proud by half. That leaves me as her Husband, her therapist, her advocate, her best friend, and unfortunately….her punching bag. That is the lament of a Husband who must steward his wife through cancer. 

I read the posts where women refer to their husbands as FH’s. We didn’t choose this any more than our wives did, you don’t know guilt until you yell at a person with cancer, or wish that it could be over so you could have your own life back. There are those that try and describe the cancer experience for a husband, Here it is: Imagine yourself falling down a flight of stairs, you come to a landing, catch your breath and then feel yourself falling again. You learn to cover up so the sharp edges and hard bounces don’t take a toll, catch your breath at every landing, and hope when you get to the bottom your bruised but not too broken….and that you’re not alone.

Our Guest Blog today is from WhatNexter "Gumpus61" he is a Husband of 34 years, and a caregiver of 3 1/2 years, and counting. Drop by his page at WhatNext and drop a line of encouragement, we all need it, caregivers too! 

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