Chapter 1: Marshall Your Energy

So now you know. Lab results are in. A pathology report confirmed what you thought may be the case. Or, your loved one’s accident took more of you than you ever thought would happen. You still have plenty of reasons to expect a happy life, a promotion at work, happy children, a stable and prosperous career. But right this moment, your life has been tossed into a barrel and nothing is clear.

Jessie Gruman, PhD, author of After Shock – What To Do When Someone Gives You Or Someone You Love a Devastating Diagnosis, says “it’s like getting drop kicked into a foreign country without knowing the culture, the language, or a map, but desperate to find a way home.” You and your loved ones are confused, flummoxed, and pretty much determined to start fixing things. Who’s the best doctor? What hospital will deliver the best outcomes? Build lists of what to dos. Hut! Hut! Fix this broken thing.

Chapter 1, Marshall Your Energy, is intended to help you manage what some people find to be a crisis. The doctor delivered the diagnosis. Your job now is to corral your knowledge resources and begin building a plan.

In this chapter, we offer a five step plan to help you answer the most frequently asked question, “What now?” Here you can access the best national and international websites to help develop a plan, find specialist’s advice, or connect with others also managing your disease. More than 15 Cool Tools are presented in this chapter, including a self-diagnosis tool to help the patient identify friends, family members, and spouse roles to assist in caregiving.

When my brother-in-law called to tell me that my sister had been diagnosed with glioblastoma, the most aggressive of brain tumors affecting the central nervous system, I immediately said, “Well let’s go after it. I’ll get on a flight tomorrow.” Reality hadn’t quite set in. I only knew after losing my brother 15 months earlier to pancreatic cancer, that there was something in the family’s history – environmental… childhood trauma…medical? Who cares? We needed to find the one right doctor who knew how to unravel this. I did a mental scan wondering where to jump-start a search for this medical magician. Sloan Kettering? MD Anderson? I’d been working with oncologists in health information technology for years. I knew and had learned to trust many. Time for an All-Points Bulletin.

“It’s terminal, Carolyn.”

I was sitting in my office, slowly dropping my head into my hand. The phone grew too heavy for my hand. My sister and I had airline tickets to meet in Minneapolis next month. Even though we lived 1500 miles apart, we had promised to meet at the Starbucks at the Nicollet Mall every year on my birthday until our minds were too mushy to fly unattended. “Let me make some calls,” I said. “I’ll find someone who can operate.”

Then my brother in law, whom I have come to love, respect and adore as my sister’s husband and caretaker, began to weep. I needed to be with him, put my hands on his face and tell him we could handle this. I could pull off a Mother Teresa healing where the radiation stemming through God’s healing mercy would pass through my hand of love, penetrate my sister’s brain, and shrink that brain-sucking tumor into a rock so that it could be cut out and pitched like piece of bad garbage. It was too much. My brother, now my sister. The diagnosis hit me like it was mine to manage. This was My SISTER! My bedroom buddy for 15 years. I hadn’t given her up to be a wife, mother, teacher, skilled horseback rider, and mandolin player just to have her mind blown by some frigging tumor. She was an adored, an award-winning teacher, a lover of life. She was sunshine, a school counselor who parented many of the parents in her school district. Even the chief of police sought her advice before sending juveniles to court. I was in shock and I doubted my brother in law could stand up to guide my sister through the health care system.

I was so wrong.

“She has five months, tops. We have a lot of work to do, kiddo.”

I had nothing to say, the wind punched out of my stomach.

“You should come when we figure out what I’m doing,” he said.

Wait? Are you kidding, you want me to wait?

His name is Stan. He is a hero. He became the caregiver who put his life on hold to chauffer my sister from lab draws to oncologist appointments to radiation, and nutrition studies. He helped her into bed, sat with her at the hairdressers, and chopped freshest vegetables into tiny bite-sized pieces. Stan also carried with him a spiral notebook so that he could shepherd the details of her lab values, chemotherapy side effects, dosage modifications and diet restrictions from one provider to another. Moving electronic health information securely from one provider to another was still in its infancy, so Stan became the trusted message carrier between providers. That spiral notebook stayed at their bedside. It was the first and last thing he touched before lying down beside her at night. In an emergency, he could help the ER access her medication and chemotherapy regimens to measure whether her vitals had deteriorated. Stan played brain games with her to encourage the few healthy cells to breed new cells. He cleaned up the kitchen when she loaded the dishwasher with liquid dishwashing gel, transforming the kitchen floor into a special effects scene that resembled heaven. He prepared cancer-starving meals and taught her how to swallow nine ginormous chemotherapy drugs a day.Then my brother in law, whom I have come to love, respect and adore as my sister’s husband and caretaker, began to weep. I needed to be with him, put my hands on his face and tell him we could handle this. I could pull off a Mother Teresa healing where the radiation stemming through God’s healing mercy would pass through my hand of love, penetrate my sister’s brain, and shrink that brain-sucking tumor into a rock so that it could be cut out and pitched like piece of bad garbage. It was too much. My brother, now my sister. The diagnosis hit me like it was mine to manage. This was My SISTER! My bedroom buddy for 15 years. I hadn’t given her up to be a wife, mother, teacher, skilled horseback rider, and mandolin player just to have her mind blown by some frigging tumor. She was an adored, an award-winning teacher, a lover of life. She was sunshine, a school counselor who parented many of the parents in her school district. Even the chief of police sought her advice before sending juveniles to court. I was in shock and I doubted my brother in law could stand up to guide my sister through the health care system.
I was so wrong.
“She has five months, tops. We have a lot of work to do, kiddo.”
I had nothing to say, the wind punched out of my stomach.
“You should come when we figure out what I’m doing,” he said.
Wait? Are you kidding, you want me to wait?
His name is Stan. He is a hero. He became the caregiver who put his life on hold to chauffer my sister from lab draws to oncologist appointments to radiation, and nutrition studies. He helped her into bed, sat with her at the hairdressers, and chopped freshest vegetables into tiny bite-sized pieces. Stan also carried with him a spiral notebook so that he could shepherd the details of her lab values, chemotherapy side effects, dosage modifications and diet restrictions from one provider to another. Moving electronic health information securely from one provider to another was still in its infancy, so Stan became the trusted message carrier between providers. That spiral notebook stayed at their bedside. It was the first and last thing he touched before lying down beside her at night. In an emergency, he could help the ER access her medication and chemotherapy regimens to measure whether her vitals had deteriorated. Stan played brain games with her to encourage the few healthy cells to breed new cells. He cleaned up the kitchen when she loaded the dishwasher with liquid dishwashing gel, transforming the kitchen floor into a special effects scene that resembled heaven. He prepared cancer-starving meals and taught her how to swallow nine ginormous chemotherapy drugs a day.