diagnosis

After I Heard the Words: "It's Cancer"

 

As the author of After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead, I thought I understood the magnitude of the impact of a cancer diagnosis on patients. After all, I had written about it at length – describing that instant when one hears words so powerful that his or her world comes to a grinding halt, and future dreams dissolve in an overwhelming cloud of anxiety.

But when, earlier this week, I heard: “You have metastatic cancer,” I was completely unprepared to deal with such devastating news. At that moment, I was no longer the author who wrote about the cancer journey – I was a patient thrust into unfamiliar territory and acutely aware of the fragility of life.

Here’s my story.

After resting for several days following a minor medical procedure, I hit the gym on Saturday, intent on regaining my stamina. But after only a few minutes of exertion, I felt incredibly winded. I chalked it up to several nights of poor sleep and the after-effects of anesthesia. By Monday, I was still feeling fatigued, but there was something more…my heart felt like  it was racing.

Though I was scheduled to play tennis that afternoon, my wife convinced me that I would be far better served to stop by her office and let her listen to my heart, check my blood pressure, and measure my oxygen saturation. I reluctantly deferred to her and cancelled my game. I am glad I did.

We discovered that my blood pressure was abnormally high, as was my pulse (nearly 40 beats per minute higher than normal).  Furthermore, Lori thought she detected an abnormality in my heart’s rhythm. So off we went to the emergency department.

Because of my symptoms, I was taken back and immediately and evaluated for a heart attack. Thankfully, that was quickly ruled out…though evidence of some rhythm issue was present. The ED physician ordered a CT scan of my chest to rule out other potential problems.

Four hours after arriving at the emergency department, the results of the CT were back. As the ED physician walked into my curtain-enclosed bay, I said, “Can I go home now?”

“You are not going anywhere,” he responded, before handing a copy of the radiology report to my wife. She looked startled, as she began to read. The physician turned to address me.

“You have a number of masses in your liver. The largest is 6.4 centimeters. You appear to have metastatic cancer. Do you have any questions?”

“What?” I blurted out as a wave of uncontrollable nausea and dread enveloped my body. “I don’t feel well. I think I’m going to pass out.”

I don’t remember what happened next, but Lori said I appeared to have a seizure, then blacked out. She said she couldn’t find a pulse and shouted for the nurses. The cardiac team rushed in and prepared to resuscitate me. Fortunately, that turned out not to be necessary. When I came to, the ED doctor was nowhere in sight, nor did he come by again to check on me.

I spent the night in a hospital room that could have doubled for a broom closet. It looked as though it had not been renovated in forty years. I lay in bed trying to wrap my mind around what I had heard, and what I stood to lose. Life took on a preciousness that I had felt only a handful of times in my life. I was not ready to let go, to give up all that brought meaning to my daily existence, and I prayed to God that I would have a little more time.

I didn’t sleep much that night – between the impending diagnosis and being constantly awakened by nurses’ aides wanting to take my vitals, machines screeching in protest because there was a problem with my IV, and the simple discomfort of being far removed from my secure home.

The next morning, Lori and I impatiently awaited a liver biopsy. A transport aide showed up mid-morning and told us I was being taken to ultrasound. We presumed it was for an echocardiogram of my heart (which had also been ordered), so I told Lori to stay put and I would see her shortly. As the aide wheeled me into interventional radiology, I said: “I thought I was going to get my echo?”

 “You’re here for a biopsy,” she said curtly. In a sense I was relieved that it would soon be behind me, but I felt badly that Lori had no idea where I had really been taken.

The interventional radiology team was compassionate and competent. After numbing my skin and providing some light sedation and pain relief, the radiologist used ultrasound imaging to guide a very long needle between my ribs and deep into my liver. He repeated this process four times – taking small tissue samples with each pass.

As I looked up at the monitor and saw the largest mass, I asked: “Is there a chance it’s something other than cancer?”

He responded, “There’s always a chance, but it does look like liver metastases to me.”

When the procedure ended, I was wheeled into a recovery area, where I received incredibly compassionate care from a nurse named Bailey. By then, Lori had been told what was transpiring and she was by my side. We had to stay in recovery for four hours to make sure there was no post-procedure bleeding.

Later that day, I was discharged. Now, there was nothing to do but await the results of the biopsy.

 

Lori and I tried to remain upbeat in the face of devastating news. When I would get weepy, she would remind me that there was always a chance that things would turn out okay. She told me that, intuitively, my condition did not make sense to her…that patients with advanced metastatic cancer to the liver were generally vastly more ill. I took comfort in those words coming from an experienced radiation oncologist, but I still struggled to have faith in a positive outcome.

There was no news on Wednesday. Late in the afternoon, we ran over to Lori’s office so she could take care of a few loose ends. As we were approaching the medical building, which is ensconced in trees and heavy grass, I thought, “What a powerful omen it would be to see deer.”

As we rounded the curve and approached the driveway, I spotted a deer standing stock still just feet from the curb. It didn’t move as our car approached. Before I could say anything, Lori turned to me and said: “That feels like an omen…a good omen!”

“You’re reading my mind,” I exclaimed…surprised that we were in such synchrony.

By the time we left, more deer had congregated a few yards from our car. The omen seemed all the more real.

Because it was Ash Wednesday, I had suggested we go to church and pray. My wife has a profound sense of faith, and I knew how much it would mean to her to attend. I’m so glad we did.

An orchestra and a choir performed, and the music took on an unusually powerful resonance. I hadn’t felt God’s presence in a long time, but I felt it strongly that night. We prayed for strength and hoped that “thy will” would be to keep me around for a while, though such an outcome was clearly out of my hands.

On Thursday, we hung out at the house until mid-day, anticipating the call that would likely determine my fate. Finally, tired of waiting, we went to run errands – including a planned stop at church to pray more. 

We were just pulling up to the post office when my cell phone rang. It was my primary care physician.

“John, it’s Chris. I’m looking at your biopsy report.” He hesitated for only a moment before blurting out: “BENIGN!”

“What?” I exclaimed, as though I couldn’t possibly have heard him correctly.

“Benign. You don’t have cancer. The pathology came back indicating you have a hemangioma.”

“Oh, my God, I feel as though a death sentence has been lifted. Thank you. Thank you.”

I turned to Lori, tears welling up in my eyes: “I can’t believe it…it feels like a miracle.”

“It is a miracle,” she remarked. “I’m so grateful.”

“As am I. Now we need to go to church – to thank God for his mercy.” To which Lori quickly nodded.

There are still tests to be run and results to be confirmed, but the outlook is infinitely brighter.

The experience was a powerful reminder of how important it is to live each day fully, to honor God, and to be profoundly grateful for our loving relationships.

But it was also something more. It made me realize how truly life-altering a diagnosis of cancer is for those patients who do not receive a reprieve. As I said when I began this story, I thought I understood the impact of a cancer diagnosis. The truth is that I didn’t really have a clue – not until it was my life on the line – my future suddenly clouded by the incantation of two words:. “It’s cancer.”

POSTSCRIPT: I was fortunate to get a life-affirming, second opinion from our local NCI Cancer Center confirming that the numerous growths in my liver were benign. The care I received at this second facility was empathic, informative, and music to my ears. 



Taking Your Foot off of the Accelerator

There is one piece of advice that Lori and I offer without equivocation to newly diagnosed cancer patients – slow down…take your foot off of the accelerator, and realize that you’ve begun a journey not a sprint.  Though certain diagnoses mandate prompt action, it should never be at the expense of level-headed thinking that leads to a clear understanding of your options.

The Role of a Caregiver

Your first order of business is to identify a caregiver, often times a family member, who will accompany you on your journey. There will be moments when you are unable to process important information about your diagnosis and treatment.  That is when your caregiver becomes your scribe – taking notes, recording comments, doing whatever is necessary to retain critical data to help you make informed decisions.

The Right Care Team

The second order of business is to ensure that you are enlisting the right health care resources to give you the optimal chance of a positive outcome.  Your cancer care team will likely include a multi-disciplinary array of providers. Physicians, like all human beings, vary significantly in their knowledge, competency, experience, and interpersonal style. Since you are entrusting your health to these individuals, you should get to know them, and feel comfortable with them.

As part of this process, you need to also consider the health system with which your doctors are affiliated. Health systems, too, vary dramatically in their capabilities. If you have a complicated diagnosis or a difficult condition to treat, some systems may be better suited to meet your needs, such as National Cancer Institute (NCI) affiliated centers or more sophisticated community cancer centers.

Understanding Standards of Care

Next, it is imperative that you understand your diagnosis. For virtually every diagnosis, there is a standard of care – pathways that define the optimal methods for treating a disease at different stages of development.  As a consumer, there are tools that describe many of these care pathways. You can find them online at www.ncccn.org/patients/. 

You will quickly discover that there are often multiple options or pathways for treating your disease. Different treatments may be equally effective in controlling or eliminating your cancer, but vary in other important ways. Take the treatment of Stage 1 breast cancer for instance. A lumpectomy followed by radiation has the same statistical likelihood of curing your cancer as a mastectomy, but is far less invasive, requires little to no reconstructive surgery, costs less, and involves a far shorter recover. Yet, for some very legitimate reasons, many women still opt for the mastectomy. There’s not a right or wrong decision…as long as the patient is truly informed as to the options and trade-offs.  

Seeking a Second Opinion

Once your care team has provided you with a diagnosis, including the location, stage, and grade of your cancer, as well as treatment recommendations, it’s time to consider a second opinion. A second opinion may be less critical for early stage cancers that are easily treated than for complicated diagnoses. A second opinion should provide peace of mind that a proper diagnosis has been rendered and appropriate treatment options explored.

When seeking a second opinion, we advise people to consider consulting with a new team of physicians at a different health system. Once again, an NCI-designated center may be a great option if available in your area. Prior to arranging the second opinion, be certain that you have all of your medical records, including diagnostic imaging and other tests, readily available for the consulting physicians.

Discernment and Prayer

Once you have the requisite information about your condition and recommended treatment in-hand, it is time to think carefully about everything that you have heard. Use your caregiver, family, and friends as a sounding board as you work through the best options for you.  Once you have discerned the answer, you can put your foot gently back on the accelerator, and pray for a safe journey ahead.

 

All of these topics are covered in far greater detail in After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.

 

The Beginning of Our Journey Through Cancer

LORI’S JOURNEY BEGINS

 While many people revel in Christmas, my wife loves the sanctity of Easter. So it was no surprise Lori wanted to attend sunrise Easter services on March 31, 2013. The service was jubilant, and we spent the day feeling that all was right with the world.

 When I finally crawled into bed around 11:00 p.m., I began to drift, though I wanted to stay awake until Lori finished her shower. A few minutes later, Lori quietly drew back the covers and slid into bed. I woke long enough to tell her I loved her and give her a short kiss. Then I was out—until her sobs summoned me back to consciousness.

 “What’s wrong? What’s going on? What did I do?” I asked.

 There was no response for what felt like an eternity. Then, in an uncharacteristically weak voice, Lori said, “I found something in the shower.”

 “What do you mean you found something in the shower?” I said anxiously.

 “I found a lump. It is two centimeters. It’s cancer.”

 Not only had Lori found a lump in her breast, but also, as an oncologist, she had determined its size and that it was malignant. I knew she was a great doctor, but I prayed there was room for error. Many times during our marriage, I hoped Lori was wrong but never more than at this moment.

 My wife, a radiation oncologist, would soon go from being a provider of care to a receiver of it. Lori and I would gain a new perspective about why the word cancer, rolling slowly and menacingly from our physicians’ mouths, rattles us to the bone. It is a word we hope never to hear—certainly not in the context of our health or the health of a loved one.

 When you hear the word cancer, it’s as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You don’t know where to start.

—Regina Brett

 

As one patient said, “I thought I was going to die. I thought I was going to pass out. I was upset. I called my roommate and I was hysterical. I didn’t know what to do. I was like blown away. It was a complete shock. To me, ovarian cancer is a death sentence.”

 Yet cancer is part of the human condition. It strikes approximately one-third of women and one half of men at some point in their lives. In 2014, an estimated 1.66 million people received a diagnosis of cancer. They joined a pool of 13.7 million Americans already living with cancer, the vast majority of whom are fifty-five or older.

 Overall, newly diagnosed cancer patients will have a 68 percent chance of surviving for five years or more—a dramatic gain from forty years ago, when the survival rate was less than 50 percent. Even so, nearly 600,000 Americans will die from cancer this year, making cancer the second-leading cause of death in our country.

 If you’re lucky, the journey will be a short divergence from life’s path. For some, however, it will be a dramatic fork in the road to an unknown future. For all, it is a life-changing diagnosis.

 A JOURNEY OF UNKNOWN DURATION AND DESTINATION

 Imagine going on a trip without knowing the destination or method of transportation, with no map to guide you and no planned arrival time. Now imagine you are leaving tomorrow, and there is no time to pack.

 It is little wonder that cancer patients often feel overwhelmed, shut down, and are unable to participate in crucial decisions about their care. Our logical minds stop working just when we need to be thinking with absolute clarity about our next steps.

 Karen Sepucha, a professor at Harvard Medical School and one of the leading authorities on how patients make crucial health care decisions, explained it to me this way:

 By the time people face cancer, they’ve usually faced other major issues in their life and made other difficult decisions. What I have found is that, sometimes, when they get into the medical community, they forget all of that. So people who have pretty advanced ways of taking care of their families and making good decisions all of sudden get to the doctor’s office and lose all of the skills that allow them to question things, get other opinions—things that they would do in any other aspect of their life.

It is a moment when time stands still, a moment laden with anxiety and uncertainty. A new journey is beginning, and it is one for which we are ill prepared. 

 

To read more, please order a copy of After You Hear It's Cancer: A Guide to Navigating the Difficult Journey Ahead. 

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