Dear Family and Friends,
"The new future can be long or short…"
- Gigi Gerlach, Oncology nurse writing in Guideposts.
What we want to know is how many years we have after diagnosis but doctors are cautious about estimating for multiple myeloma. Siddhartha Mukherjee in his book, The Emperor of All Maladies, says, "In 1971, about half of those diagnosed with multiple myeloma died within 24 months, the other half died by the tenth year….in 2008, about half…treated with the new drugs will be alive at five years…the other half to be alive well beyond ten years." But what does this mean for me? Do I have a 50 percent chance of living ten years? I can't be 50 percent alive. I am either alive or I am not. How does one think about and process these numbers? Doctors are more open ended. Some patients live decades, no promises but always possible hope.
A multiple myeloma diagnosis means a shortened life span, a narrowed future. There is no cure, but can be managed the doctors say. Myeloma will be the cause of your death. Some people process the diagnosis and numbers and end up focusing on the worst case scenario, others take a more optimistic approach and hope for the best case scenario. Although Carol never said it to me, I am convinced from watching her that after the initial diagnosis and after each setback that followed, she processed the data and came to the same conclusion, "Hmmm…disappointing, but if God is with me, what does it matter? It will be OK."
Not often, but I do spend some time reflecting on the events that led up to Carol's passing. When I do the recurring theme I come up with is that myself, family, friends and medical personnel were always a little bit behind Carol on her journey. Carol was on the road with God and we were following behind.
The Gospels record a specific time when Jesus' focus turned to preparing his disciples for the watershed event of his death and resurrection. The Gospel of Mark says it this way.
"Back on the road, they set out for Jerusalem. Jesus had a head start on them,
and they were following, puzzled and not just a little afraid. He took the Twelve
and began to go over what to expect next. …"
Mark 10:32, 33 The Message version
In a sense, Carol and God were on the road ahead of us and we followed behind "puzzled…and a little afraid." It is their path and so we follow behind.
In the Chronicles of Narnia book The Silver Chair, Jill and Eustace are sent to Narnia to rescue a prince. Aslan the Lion gives Jill four signs that are to guide them on their quest. She is to memorize them and repeat them every night. As the adventure unfolds Jill and Eustace give up repeating the signs and muff seeing them for what they are…yet Aslan watches over them and keeps them on track. There were signs along the way of Carol's journey, but we didn't always see them for what they were.
--The First Sign--
The initial diagnosis was tennis elbow and do physical therapy. Carol followed the physical therapy but it only got worse. So back to the doctor and this time there is an X-ray. It took a while to get feedback on the X-ray results because it was being passed on to other doctors to evaluate. 5 days later Carol has appointments for an MRI and CT scans and appointments with an orthopedic bone surgeon in South San Francisco and a radiation specialist in Santa Clara. It was the radiation specialist that set us down, showed us the scans and told us the overall picture. We now knew the diagnosis but in preparation for the surgery there were two more X-rays taken and each time the elbow was much worse. Some myelomas are slow others are fast. It had only been a few weeks between the X-rays. The sign was, this myeloma is fast and aggressive…but we didn't pick up on the significance at the time.
--The Second Sign--
The blood test numbers from the first chemo regimen were positive but the side effects became unbearable. So, you try a different chemo regimen…more tests. Test numbers are getting worse. There is a tumor in the abdomen, not where myeloma is supposed to be. This sign is recognized. We now know that a bone marrow transplant is not in the future. Instead more radiation and try a different chemo regimen.
There were more signs as the last two months progressed, all pointing to the fact that this was an aggressive cancer. The reality was Carol was experiencing the worst case scenario. Amazingly Carol's attitude was, I don't like this, but God is with me. It was clear from the beginning that Carol's focus was on walking with God on this journey…don't go searching elsewhere, just walk with God. It didn't mean she didn't hope for healing and a good outcome. But after each setback she got back up and walked with God.
While Carol was never in despair as far as we know, what about those of us who were following? Yes there were signs and we didn't always see them for what they were but God was taking us aside and saying watch this, read this, think about this. Looking back now we see ways in which God was preparing us. Here are a few of the items God brought across my path.
In October of 2013, the book, Walking with God through Pain and Suffering by Timothy Keller was published. This book presents the cultural, philosophical and Biblical perspectives and ends with first-person stories of those experiencing pain and suffering. This is a good book, but read it before it happens to you or a loved one. You don't want to read it while in pain or suffering.
In the summer of 2014 I came across a Ted talk by Matthew O'Reilly, an emergency medical technician titled: "Am I dying? The honest answer." It is a little over 5 minutes long and presents a compassionate view we don't often see in the emergency medical world. Here is a link:
http://www.ted.com/talks/matthew_o_reilly_am_i_dying_the_honest_answer
In September of 2014 Soul Keeping by John Ortberg was published. It is a great book on taking care of your soul.
In October when things were going rapidly downhill, the book, Being Mortal: Medicine and What Matters in the End by Atul Gawande was published. I highly recommend reading this book. It will help you understand our culture, our views of aging and death and give you tools for dealing with the medical world.
So, there you have it, Carol walked with God on her path and we followed behind. Once again, thanks for listening. In the next post I will share something very different titled, The Mail Box.
Until then, grace to you ….. George
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