Black and White

Mt. Hood and the Columbia River looking south from Catherine Creek

Mt. Hood and the Columbia River looking south from Catherine Creek

Recently, I changed doctors. The Hood River community does not have an oncology practice. Consequently, they contract with established physicians from Portland, OR. Dr. A is our new visiting hematologist. She attends to all local patients with cancer and, when necessary, manages their chemotherapy in our hospital’s small infusion ward. Fortunately for me, her training specialized in multiple myeloma.

We have met three times since she took over in December. In January, I underwent a skeletal survey. We found no evidence of bone lesions or soft tissue tumors. My blood labs showed no surprises. As I departed from my last appointment, she laughed when I commented on being a boring patient. “Yes,” she said, “and that is a good thing.”

Fence posts, ribbon, and our house.

Fence posts, ribbon, and our house.

Her philosophy mimics my previous oncologist, Dr. M. They both believe that “less is more.” I continue to occupy what I’ve come to characterize as the black and white phase of my disease journey. My diagnosis, early chemo treatments and stem cell transplant were the colorful episodes of my cancer saga. Now, the monotony of my MM is as dull as TV reruns from the 1950s.

Over the holidays while visiting family in Las Vegas, the ritual of sharing what is new in our lives occurred frequently. At one point, as I discussed my health, I blurted out, “I feel a little guilty I’m not dead.”

Mt. Hood and clouds from the Upper Hood River Valley

Mt. Hood and clouds from the Upper Hood River Valley

By that, I meant to convey that I am pretty well talked out and written out on my condition. There is little to add when I try to inform those following this blog. More and more, I have less and less to add to the conversation.

My response to treatment is extraordinary and, on the other hand, typical of about 20% of patients with MM. The miracle drugs that I take fulfill the promise of their clinical trials. And though the side effects of fatigue, eye irritation, and peripheral neuropathy may hobble me at times, their transient intensity always returns to a tolerable baseline. I am not dying of cancer; I am living with cancer.

Ever photogenic, my cat Spanky is in charge of stress control.

Ever photogenic, my cat Spanky is in charge of stress control.

Such is the modus operandi for MMers with low-risk disease. I have many acquaintances with MM following this same path. In spite of my complaints, I thrive. I try to maintain an attitude that manages life’s daily stresses. A modest yoga routine along with physical exercise keeps me grounded.

I admit that selling our house caused some anxiety. But soon all aspects of that will be completed. I look forward to the adventures of living in a new environment. I plan to keep blogging even though I mostly write something about nothing.

I’ll also keep photographing what catches my eye. In succeeding posts I will return to color photos. However, here’s hoping that my cancer remains an uninteresting black and white.

Care Giving

“Genes are like the story and DNA is the language that the story is written in.”

Sam Kean, The Violinist’s Thumb

Summer Clouds

Recently, I traveled to Portland, OR for my monthly multiple myeloma support group meeting. In the course of the last 3+ years I have solidified friendships with several other members. We know much of each other’s cancer story. Before and after the meeting, we make time to catch up on the myriad developments in our treatment.

This meeting featured none other than my own oncologist, Dr. M. He delivered a presentation based on the latest research from the American Society of Clinical Oncology. In keeping with recent trends, ASCO revealed further evidence of drugs that may soon be available to fight myeloma.

The percentage of patients responding to trial protocols impresses those of us with MM. Survival times creep forward as researchers find diverse ways to suppress the malignant plasma cells. Still, it’s easy to become sedated by the minutiae of clinical trials. After discarding the chaff of numbers, two clear messages about the status of our disease remained: the search for curative solutions continues to progress, but ultimately, nearly all MMers relapse.

Pathway outside our back door.

Dr. M explained this situation by noting that myeloma is a genetically complicated disease. He drew a comparison with chronic myologenous leukemia. CML patients, due to the discovery of Gleevec, enjoy a high rate of cure for this once deadly cancer. The biology of CML is simpler than that of MM. In CML, a specific enzyme in white blood cells is locked in an activated form. This causes the excessive proliferation and high white blood cell count characteristic of the cancer. Gleevec, binds to the site of the enzyme and prevents its activity, causing tumor cell death.

The genetic intricacy of MM does not lend itself to such easy remedies. While Gleevec can focus in on the single weakness in CML, multiple myeloma has a more sturdy biology. It is smart. It finds its way around blocked pathways in order to continue cloning itself. Currently, targeted therapies don’t exist because the target cannot be found.

White Oriental Poppy in my garden

Novel agents, such as revlimid and velcade, suppress the tumor burden but these drugs are broad-spectrum cell killers. Their specificity leaves something to be desired. Relapse occurs because cancer cells that are genetically resistant to a drug outgrow all the nonresistant cells.

One of our support group members, K, introduced Dr. M. Her husband was a patient of Dr. M for six years. Last year his MM took an aggressive turn. All attempts to stifle the cancer failed and he passed away early in the winter of 2011. Her husband was a Buddhist. Many members of our group, as well as Dr. M, attended the traditional and moving ceremony held at his temple in Portland.

In spite of her loss, K remains committed to our group. She utilizes her background in graphic design to prepare meeting announcements. She also writes a caregiver’s blog for the International Myeloma Foundation. And, she was instrumental in getting Dr. M to speak with us. K’s testimonial to Dr. M spoke to the high regard in which colleagues and patients hold him.

A bouquet of wildflowers in the garden

Obviously, doctors cannot fight our battles for us. Dr. M is a clinician, not a researcher. He will not discover the cure. However, the quality of his caring matters. Compassion has healing attributes. It may not mend the body, but it can protect our soul as we brawl with the biology of MM.

Eventually, a pharmaceutical like Gleevec may unravel the mysteries of multiple myeloma’s DNA. Truly, the best is yet to come. In the meantime, individuals such as Dr. M and K illustrate that care giving is also a powerful drug. Injecting a heavy dose of dignity into the heart and mind of another person has no adverse side effects. You don’t need insurance or a prescription. Furthermore, a clinical trial is not necessary to evaluate how it improves the quality of life. It just works.

I know, you like Cassie better

Ever since elementary school I loved creative writing. Unfortunately, I had a bad 9th grade English experience that ruined my perspective on my personal writing forever. The teacher seemed to have something against me and I felt very small in that classroom. My passion for writing disappeared to the point where I enrolled in the School of Engineering at U of M, not because I had a passion for math and sciences, but because I did not want to have to write a single paper in college.
But this post is not about me and the need for reconciliation with a teacher I had over 15 years ago, it’s about how Cassie dominates writing and my hope to see her return to it. Even though her blogposts on MMforDummies get at least twice the comments as mine I choose not to get competitive about this matter because it’s a battle I cannot win. Cancer on the other hand, I can handle.
Cassie is a complete rockstar writer. As most of you have discovered, she is hilarious, witty and can provide some very insightful and pragmatic advice. She just dominates. To tie this all in with our cancer journey, Cassie and I have realized that it is really important that she have a life beyond kids, cancer and picking up everyone else’s messes. She was once an avid personal blogger, but well….cancer and MM for Dummies took over our that. It was cancer first, everything else last.

Over the last few weeks I have encouraged Cassie to get back to expressing herself in writing. She is slowly, but surely returning to informing the online world about her constant battle picking up the messes of the ones she loves most, while making people laugh and cry along the way. She is truly a gifted writer. You can tune in here if you are interested: http://spilledmilky.blogspot.com/