David, I Have a Lump!

David, I Have a Lump!
Breast Cancer: One Husband’s Story

December 18, 1996, 6:00 p.m. Nothing extraordinary about the day or the time or the setting. I’d come upstairs from my office in the basement, pleased with a good day’s work. Chowder, our robust Black Lab — the Pavarotti of dogs, we have joked — had been fed and walked. I was sitting down to catch Chet and Natalie on the Channel 5 news. Tina was due home, any minute, from an appointment. I couldn’t remember where. Then the door opened. Tina walked in. And life turned upside down.

“David, I have a lump…and it’s the wrong kind!”

“A lump? What do you mean, a lump?” But her pained little-girl expression screamed the news I could not bear. Tina doesn’t rattle easily, but she does know about lumps. And what they might mean. She…I…we both knew that a most unwelcome stranger was banging on our door…

She breathlessly explained how her regular check-up, a week earlier, had resulted in a request for a mammogram — her first in three years — which led to some concern and the need for further tests and how a biopsy would be necessary to see if “the lump” was malignant and how there was no cancer in her family and that she was supposed to die of a heart attack some day, which did run in her family, but not now, and how she wasn’t ready to die and …

Each pained word pierced my soul. Out of breath. Ashen face. Beads of sweat. “Are you all right,” she asked, “I’m the one who’s supposed to be sick!” Typical Tina: feisty, loving, straight-to-the-core. My best friend and life partner, the Raggedy Ann to my Andy. Okay, God, enough’s enough. Let’s delete the last five minutes and return life to normal and a lumpless Tina to me. But it was not to be. This was no dream.

“I have to step outside,” I gasped, “have to get my bearings.” I felt ashamed to have reacted so un-calmly, so un-reassuringly, so … emotionally. But my reactions arose from some dark and fearful place, an inner child, in terror, at sea. I hate to see Tina in pain, not my Tina, not the spirited woman I married eight years ago, a second marriage for both of us, a one-plus-one-equals-three pairing on all counts. And I can’t stand, let alone understand, things medical. Small cuts make me wince. I watch ER for the stories, not the gore. And I never get sick, a Schmoo Tina calls me. Have to be strong. Have to be there for the person I care more about than anything in the world. I went back inside to get the full story. And to help plot a course for the battle we both now faced.

The next few days whisked by in a blur, filled with questions, fraught with anxiety. Christmas was coming up. Do we tell her two sons? My two sons? Our friends?. No, first we – I say we because breast cancer strikes the husband as well as the wife, in my experience – must have the biopsy. Maybe it’s a false alarm; maybe the tumor is benign. Why ruin Christmas with a false alarm? We decided to keep our silence – for now.

She had the biopsy on December 23. Her sons, Ed and Andy, and my dad were to arrive for Christmas on the 24th. The biopsy results were due on the 26th. She confided in a close friend who called on the evening of the biopsy. The friend took great issue with the “silent” approach: “You have to tell your sons right now! You’ll need their support as well as David’s.” She told them. They hugged her. We talked. Our army was gaining strength.

Together, we shared Christmas, deeper than usual, more loving, more touching, less teasing. We faced the first fork in the road, the next day’s biopsy results, with fearful optimism. We wish you a Merry Christmas, we wish you a Merry Christmas, we wish… But . . . bad news. The biopsy showed that the tumor was malignant, though, thank God, rather small. A lumpectomy, scheduled for December 30, was scheduled to remove the tumor.

The lumpectomy went well, the surgeon told me on the phone. She had gotten “good margins.” If the doctor was pleased, then I was pleased. I returned to the recovery room to find Tina tired but in good spirits. We played Scrabble. (She won.)

The doctor was optimistic that she “got it all,” but cautioned that lymph node surgery would be required, common procedure, to make sure and to determine the next steps. Radiation, at least, we were told. Chemotherapy, the very word chills my hands even as I write this, if the lymph node surgery suggested the presence of cancer in other parts of the body. The doctor seemed optimistic. So did we. A little.

Lymph node surgery was required to determine if any lymph nodes contained cancer cells. The surgery was scheduled for January 15. We faced the next fork in the road. Does this journey have no end? What to do besides worry — and read? Tina read several books on cancer; I, medical phobic that I am, skimmed a few pages, focusing mainly on the charts, the odds, the prospects for Tina’s future. She talked to a good friend, a social worker at Dana Farber, whose insights proved invaluable, then and later.

Our own talks and feelings revolved around little more than cancer at this stage. Cancer and early death and the-odds-of-this-or-that, and dashed hopes and deep fears. I remember getting angry, at one point, with Tina’s all-consuming focus on a disease she might already have beaten! “I don’t want to die!”… “You won’t!”… “You don’t know that!”… “Everybody’s going to die!” “But I’m too young.” I didn’t want cancer to crush our lives, to beat us down. Neither did she. But it was with us. It will always be there, this unwanted stranger in our home. Sometimes we just sat and held each other, saying nothing, feelings too deep for tears.

One day, standing in front the mirror, Tina said, softly, a rarity for her, “I may lose my breasts.” “I love you,” I replied, “I don’t love your breasts.” “What, you don’t love my breasts?” I want you, alive and well, with or without breasts, you!” I tried to recover from the gaffe. Unsuccessfully. Sometimes we men, it’s true, just don’t get it. Mea culpa. Eventually, we both laughed. And cried. An old saying came to mind, helpful to husbands at times like these: “A closed mouth gathers no feet.”

We learned a lot about breast cancer from reading and talking to friends. First of all, it’s everywhere. Everyone, it seems, knows someone who has had breast cancer. Most, but far from all, of the stories we heard had ended on a “positive” note. One in eight women get it at some point in their lifetime. And 80 percent of the women who get breast cancer have no family history of the disease. Middle-age, Tina’s age (54), was as “good” a time as any to get it, because treatment at this age level often yields many healthy years.

We also discovered, all too first-hand, the elusive and capricious nature of this beastly disease. “They” don’t really know what causes it. And “they” don’t really know how to cure it. You read and hear almost daily about how diet and exercise and a “good” (that is, cancer-free) family history lessen your odds of being one of the unlucky “1 in 8.” That may be true. But it wasn’t in Tina’s case. Everything about Tina’s life habits and family history suggested she would, should, be spared. That’s why she had been casual about getting regular mammograms. Yes, she should have been getting mammograms every year, not every two or three years. But that’s easy hindsight. The message? Every woman is vulnerable. Every one. At any time. Cancer plays no favorites, the odds be damned.

She underwent the lymph node surgery on January 15. Again, the surgery went “well.” But Tina felt awful. And the surgery didn’t go “well” enough, revealing small spots in two lymph nodes, a sign that the cancer had begun to spread.

We met with Dr. Susan Sajer, an oncologist at Emerson Hospital, to discuss the options. Chemotherapy would be required. Bad news. Her breasts could be spared, at least for now. Good news. Dr. Sajer asked if Tina would be interested in participating in a clinical trial which essentially involved the possibility of receiving stronger than standard dosages of standard chemotherapy drugs. Half of the patients in this nationwide test were getting the experimental protocol; the other half received a standard protocol. Tina didn’t like the idea of the regular treatment, let along the experimental one. A long discussion ensued. “Would you recommend participation in this study if your sister were involved?” I asked. “Absolutely!” she replied, with no hesitation. Tina chose to participate and we neared yet one more fork in the road.

She was “chosen,” fifty-fifty chance, to receive the experimental protocol. Misgivings notwithstanding, there was no turning back. She had signed the forms warning of scores of possible dire effects including, in cheerless legalistic terms, death from this treatment.

Another operation was suggested prior to chemotherapy, the installation of a “port” in her chest to facilitate the administration of the drug. Using a port, we were told, would be easier than finding a vein each time. She chose to have the port. In for a dime, in for a dollar. Surgery was becoming almost routine around our household, like a trip to the recycling center.

While we had “lost” at every fork in the road thus far, we had “won” two new friends: Cynthia and Michael, a couple going through the same experiences at the same time, almost to the day. Cynthia and Tina had spent the night in the same hospital room following lymph node surgery and shared a personal bond that went deeper than cancer. Moreover, Cynthia was to be in the drug-heavy protocol group as well. They arranged to undergo their chemotherapy treatments together. Our armies merged forces.

Even before the first chemotherapy treatment, we had discovered one of the life-changing impacts of cancer: the love of good friends and even total strangers for whom cancer, alone, was the common bond. Tina received at least one letter or phone call daily – usually several — from someone, somewhere, for the first three or four months. Wishing her well. Offering support and prayers. Two good friends vacationing in Hawaii even sent a care package, filled with sand from the beach, a theater review, a church program, a golf score card. We both wept, touched by their thoughtfulness from thousands of miles away. The sea of support, which continues to this day, carried us over the shoals of despond and despair.

Before describing the first chemotherapy treatment, let me say this about hair: Hair matters. At least it does to the woman who shares my life. Bad hair days? What about no hair days? Dr. Sajer had said that Tina would lose all her hair – everywhere – two or three weeks after starting chemotherapy. Tina’s Dana Farber friend said that, while she would need a wig for special occasions, most women with cancer seldom wear one, preferring colorful scarves or just plain old hats.

After some wig research, we headed north to Tyngsboro to purchase a wig. The first wig she tried on seemed perfect, but Tina being Tina, and wig purchasing being an uncommon event, she tried on several others. “How about blond?” “Do redheads turn you on?” We had a good time, both swapping jibes, she donning new personalities. Then we bought the wig that made Tina look like Tina. Incidentally, though the wig (“Wiggy”) remained a constant presence for months, perched proudly on our piano while we were home and toted dutifully along when we were away, it seldom got put on Tina’s head. She preferred scarves and hats to the hot and scratchy, though lifelike, wig. She mostly preferred being bald. “Why hide who I am and what I have,” she reasoned. I couldn’t – and didn’t – argue. A closed mouth ….

When the first sign of hair was due to return, a few weeks after the end of chemotherapy, Tina searched her scalp like a hopeful miner panning for gold. It happened to appear when her 13-year old niece was visiting. They got out the magnifying glass to see the first small sprouts. “It’s there!” she crowed. “Positively hirsuite!” I rejoined. Tina hoped that by the time we took our post-cancer treatment trip to San Francisco in September, she wouldn’t have to wear a wig. “You’ll look natural in San Francisco,” I ventured cautiously, “part of the scene.” She took the wig along on our trip. And never wore it.

I’ve never seen Tina as scared as she was the morning we headed off to the first chemotherapy treatment. The assurance of the “known” (chemotherapy usually “works”) gave way to the fear of the “unknown” (what would the reaction be?). So there we were, the four of us plus the oncology nurse.. Tina and Cynthia chatting nervously away in reclining chairs. Michael wanting to know everything that went on – and in. Me staring at the ceiling, trying to absorb everything while avoiding the stark medical realities. The nurse, Anne Marie, being very efficient and professional and pleasant. (NOTE: I should emphasize that Tina’s treatment by the staff at Emerson Hospital in Concord, Massachusetts, was absolutely first-rate in every way at every stage: professional, caring, sympathetic, human. We couldn’t have asked for more.)

The “treatment” – first a saline solution, followed by an anti-nausea drug, followed by a slow, steady input of “the” drug (a ghoulish deep red concoction) through the port – lasted about three hours. At the end, Tina and Cynthia both felt groggy, almost giddy, as if they’d been drinking. We all walked out to the parking lot slowly, feeling quietly elated. This wasn’t so bad. One treatment was over. We were going to beat this beast.

Chemo’s rhythms ruled the next few months. Felt okay, then tired, then awful, then pretty good, then almost normal, then, wham, another hit. Seven treatments in all. Felt a little more wiped out after each treatment. And scores of phone calls back and forth between Tina and her cancer pal. “Hi, David, this is Cynthia. I feel lousy! Is Tina there?”

I continued to work during “the chemo,” but my heart was upstairs with Tina. She spent most of her time resting, sleeping, listening to music or books on tape. Snow Falling on Cedars, all 13 unabridged tapes of it, ranked as the best. We took a long walk every single day, over the hills and through the woods at a nearby reservoir. The walks meant a lot to both of us, especially to Tina, she says in retrospect. And Chowder, who never took a walk he didn’t like, was in dog-heaven-on-earth.

During one of the down moments, and there were many, Tina said, “If I die, I want you to go out and find a sweet young thing.” “I don’t want a sweet young thing!” I said fiercely. “Or a sweet old thing! I want you. You will get better.”… “You don’t know that!”… “Yes, I do!”…. “You’re in denial!” … “I’m in love. And the odds are with you!” “The stupid odds said I wouldn’t get cancer, and I did. What about that?” Silence. Tears. So many questions. No good answers.

In most cases, in Tina’s case, radiation follows chemotherapy. Just as day follows night, it could be said, because radiation, for Tina, proved to be much easier, mentally and physically, than chemotherapy. Two quick (30 seconds each) zappings every day (except weekends) for six and one-half weeks. A quick zap, one from each side, to the same part of the breast each time.

And then, on August 12th she was done. We were done. Treatment was over. That very day we headed up to the coast of Maine for a two-week vacation. We took two cars. I stopped in Exeter, New Hampshire, on the way up to buy flowers. She was greeted with that bouquet and two others — good old Ed and Andy — upon her arrival in Maine. It was the best vacation we ever had.

More than a year has passed since the beastly stranger that is breast cancer entered our house and upended our lives. Tina is back at work, as a speech/language pathologist working with babies and small children, three days a week. Her hair is growing back. Her blood count is going up. Her spirits have never seemed higher. She’s taking an anti-cancer drug orally and will continue to do so for the next five years. As a result, she does get “hot flashes,” from time to time. I quickly learned not to take credit for them, not to joke on that score.

The prognosis is good. Tina’s on the mend. I still work in the basement. Chowder still demands plenty of food and walks. And life is good, even better than it was before the stranger broke down our door.

Do I wish the stranger had passed Tina by? Absolutely! No one deserves the fear and uncertainty that cancer inevitably brings. But I am glad for the lessons that cancer has taught. And, in truth, Tina is too.

Cancer showed me what a very special person Tina is. I knew, but I didn’t really know. Her spunk and spirit and resilience continue to amaze me. I will never, ever, take her for granted again. The things she does that once bothered me seem so trifling now. The whole unvarnished package, cancer or no cancer, breasts or no breasts, is real – and really perfect for me. Nothing, not even cancer, will ever conquer the love we share, ever tear the bonds forever forged by this frightening experience.

On our walks, during periods at home or away, at all times, Tina has shown me the importance of savoring the small things: a jack-in-the-pulpit in the woods; a majestic blue heron standing tall in a low marsh; a good cup of coffee; a real talk with a real friend; a shared laugh with a stranger; a sunny day; a rainy day; any day; every day. Yes, every day matters. Every minute counts.

We certainly discovered anew the value of friends. They are many, and they are life sustaining. We drew sustenance from the support of family: my parents, my two sons and daughter in law, my siblings and their families as well as Tina’s sons and brother and nieces. Tina and my niece, Linda who, in her mid-twenties had a malignant brain tumor, developed an extra special bond.

I’ve noticed changes, too, in my own life apart from Tina. Priorities shift when cancer enters your home. Life’s nuisances no longer rattle. Unreasonable clients? A blip on the screen. An errant golf shot? My wife had cancer. A bad weather forecast? It’s good to be alive. Gloomy media reports? Take a walk or read a book or call a friend.

All that said, I don’t want to be a Pollyanna about the future. We both know that Tina’s “cure” may be ephemeral, a false hope, a prelude to the next fork on the road. The cancer may return. Odds are it won’t, those odds again, but it may. We both have to live with that. In the meantime, we both have to live. We are. And we will. Today is a very good day.

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