WHAT IS HOPE?

Esparanza…

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”

― Shel Silverstein

According to Merriam-Webster Dictionary, HOPE means “to desire with expectation of obtainment.” Wikipedia contributors state that “Hope is the emotional state which promotes the belief in a positive outcome related to events and circumstances in one's life. Despair is the opposite of hope.”

This weekend the 54^th Annual Meeting of the American Society of Hematology (ASH) is underway in Atlanta, Georgia. My doctors at National Institutes of Health (NIH) in Bethesda, Maryland, and M.D. Anderson in Houston are presenting their findings on the magical drug Ibrutinib (formerly PCI-32765), along with other leukemia experts from The Ohio State University. The phrases “promising,” “has the potential to improve long-term prognosis for patients,” “high response rates,” “durable remissions,” “including patients with high-risk disease (me),” “effective and safe targeted treatment option,” “manageable toxicities,” give me hope.

Let me review what chronic lymphocytic leukemia (CLL) is for those of you who asked. It is a blood cancer that causes malignant white blood cells to gather in the lymph nodes, bone marrow, blood, and other organs of the body. The cancerous cells causes organs to enlarge, bone marrow to be so impacted that it cannot produce red blood cells, lymph nodes to enlarge to the point that it impacts other organs of the body, and white blood cells increase exponentially in the bloodstream, since the malignant cells do not have the message to die.

Ibrutinib, which is the experimental drug I am taking at NIH, is an anti-cancer therapy that specifically targets an enzyme that is important to the growth of CLL. The enzyme is called Bruton’s tyrosine kinase (BTK). Ibrutinib “unhooks” the leukemia cells from the lymph nodes, bone marrow, and organs. The “unhooked” leukemia cells then flow into the blood stream causing a temporary increase in white blood count (WBC). Ibrutinib also gives the leukemic cells the message to die, so once the cells enter the blood, they essentially starve and die. An important thing to know is that unlike chemotherapy, Ibrutinib promotes the death of the malignant cells and does not harm healthy cells.

Today there is no knowledge of the long-term side effects of using the drug. Today there is no knowledge of when the drug stops working. But today for me, HOPE comes in the form of three blue capsules a day…

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.”

― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten

P.S.: Thank you Rocky and Liz for naming my granddaughter “Hope.”