We went to see an oncologist for a second opinion. It wasn’t because we doubted the hematologist’s initial diagnosis or ability to treat G. It was because we had difficulty understanding her accent and were not satisfied with the trail of stingy crumbs of information she was dropping. She left us mostly in the dark. There was more we needed to know. For the love of God; we are adults! We needed the whole picture presented to us!
Perhaps it was her culture that shaped her to be emotionless and robotic or the fact that English is not her first language. Maybe the emotional disconnect comes with the territory when dealing with nothing but blood and bone marrow disorders and cancer. Perhaps it’s all of these.
When G asked her about a bone marrow transplant (the only cure for myelodysplastic syndrome) she said it was "a bad idea because of his age;" no more explanation than that. It appeared she was willing to write G off at age 68.
We needed something more. We needed her to recognize G as a valued life, as a living soul with a purpose. God values all life, and so do we. No life is expendable; not the unborn via abortion or the neglect of aging senior citizens.
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.” ~ Matthew 10:29-31
Armed with medical records, test results and a list of questions we met with the oncologist for a second opinion. He reviewed G’s recent medical history. With the investigation already complete he just had to devise a treatment plan. I had a list of questions which I meant to ask – questions that the hematologist left unanswered. I never had to present them because the oncologist covered every one during the consultation.
He was full of helpful information. We even learned about the International Prognostic Scoring System (IPSS) which helps oncologists predict a patient’s prognosis. Using all of G’s data from his blood tests the oncologist determined that G’s score is 0.5. This represents Intermediate-Risk associated with a median survival of 3.5 years. In this subgroup of patients, 1/4 will undergo evolution to myeloid leukemia (AML) within 3.3 years. With treatment G’s life could possibly be extended beyond this number.
The oncologist’s Plan A would have been to first treat G with erythropoietin (EPO) shots. Erythropoietin or EPO is a hormone produced by the kidneys that controls red blood cell production. It is a protein signaling molecule for red blood cell precursors in the bone marrow. Even though G’s kidneys are already producing EPO well above the normal range, the oncologist believes EPO shots would have helped. However, our insurance denied approval for EPO shots.
Plan B is to treat with Vidaza, an anti-cancer chemotherapy drug. In simple terms, Vidaza will interfere with the chemistry of G’s DNA and allow his red blood cells to mature. If G is responsive to this drug it will manage the MDS and prevent evolution to AML for as long as his DNA remains responsive to it. However, at some point we were warned that G’s DNA will figure out it is being tricked and will begin to resist the drug.
The oncologist’s first order of business was to schedule a blood transfusion since G already has cardiac issues. G’s hemoglobin has dropped to 7.2 and should be 14. The oncologist said, “We don’t want you having a heart attack while waiting for treatment.” Finally G is going to be transfused!
Near the end of the consult the oncologist called the bone marrow donor center and asked them to schedule an appointment for G. They will be calling us with an appointment date and time.
By the end of our consult with the oncologist we both felt that we preferred him and decided the hematologist needed to be “kicked to the curb.”
"Keep me as the apple of your eye; hide me in the shadow of your wings."
~ Psalm 17:8
"He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart."
~ Psalm 91:4
Beautiful photos and verses!
ReplyDeleteKeeping you and G in my thoughts and prayers.
ReplyDeleteSo glad God has provided you a better alternative.