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Nobody can really guarantee the future. The best we can do is size up the chances, calculate the risks involved, estimate our ability to deal with them and make our plans with confidence.
- Henry Ford II
It was last August, and I knew that bad news was on its way. Since Alan had been wanting a trip along the Oregon coast, we thought this would be a good time. It was before the bad news was delivered, so we could play without having heard it yet.
We escaped the heat of Portland, stayed in the "Steinbeck Room" at the Sylvia Beach Hotel in Newport, where every room is dedicated to an author and decorated accordingly. Our room had shelves of botany samples in jars a la "Cannery Row" and a mural of the truck from "Grapes of Wrath" with the headlights doubling as reading lights for the bed.
I skim-read "East of Eden" for the racy parts, bought salt-water taffy (did you know they make a chipotle flavor?) then we spent the next night in a Bed and Breakfast in Florence recommended by one of Alan's oncology nurses.
But my vivid memory is of what happened at Waldport. This was the day of their modest Farmer's Market, and among the usual vendors of fruit, soap, earrings, and cookies, was an empty booth sporting primitive wooden heads and a sign "Palm Readings $5."
I was intrigued, so we waited for the reader to return. Her name was "Steel," a tan, strong woman with intense blue eyes. She told me that her readings were a combination of what she saw in the hand and intuition. She looked at my hand with a magnifying glass as she told the meanings of the lines in my palm, and the lines I was apparently missing. She said, "Something happened about five years ago that changed the direction of your life permanently."
She took a lot of time with me. When she was done, she asked if her reading felt accurate, and I told her "My husband has cancer, and things aren't going well."
She asked Alan if she could read his palm for free--as a gift.
Alan said "Yes," with a little coaxing, and she talked to him about his spiritual journey, and embracing what comes to him rather than chasing after growth.
From the time we left Steel and the market until we returned home, most of our conversations were about what she had said. We pulled the car over to a viewpoint at the ocean and talked about some of the things that had gotten too scary to talk about... Memorial services, wills, computer passwords, financial skills (or lack of them), advance directives.
We each felt our 'readings' had been made by an insightful woman who had given us a prism for looking at what we both knew, but hadn't been able to talk about until now.
When we returned to Portland for Alan's appointment, Dr. M told us that the SPEP, the bad numbers, had gone up. I had known this would happen because treatment had been postponed much of the previous month, in order to give Alan's blood counts a chance to recover. Alan was weak and couldn't walk without his cane and my arm. Everything but the Dex had been stopped.
Dr. M is also a person who guides using a combination of what he sees and intuition of how best to share it. I noticed that the last thing Dr. M said at a clinic appointment was usually a quiet hint about something he expected to become worse. At one point, I mentioned to him that I'd noticed this, and he started making the 'quiet warnings' the second-to-the-last thing he said to us. His is a gentle way of sharing difficult information and it worked well for us.
I hope each of you is fortunate in the guides who are looking at your future.
(The photo is of Zoltar, in front of an Ice Cream
Parlor in Florence, Oregon)
All of us affected by cancer remember the day everything in our lives suddenly changed forever.
I will never forget when it happened to us. It was in 2005, and Alan's myeloma was discovered after a routine checkup. There had been indications that something was wrong, back pain, a frozen shoulder, and swelling in his leg that turned out to be from a blood clot. The doctor who diagnosed the blood clot wanted Alan to have a complete physical. When tests revealed high cholesterol and an elevated blood protein, Alan came home concerned about the cholesterol. After a couple of return trips to retest his blood, his physician referred him to a hematology specialist. The hematologist sent him home with the materials for a 24-hour urine test; and I saw the words "Bence Jones" on the label. Alan was surprised that the hematologist worked out of a cancer clinic, but he still wasn't worried; he'd been healthy all his life and thought the doctor was being over-cautious. But I looked up "Bence Jones" on the internet: I was scared. Because Alan wasn't distressed, I felt I couldn't tell him what I'd read. I spent the weekend trailing him around the house, silent, but in tears- until he barked at me to stop following him.
My emotions careened between hope and fear the weeks before the test results came back. That is another memory all of us share.
On that day in 2005, Alan went into the doctor's office alone and I waited out in the reception area of the cancer clinic--it didn't occur to either of us that I should be with him in the examination room. That was the last appointment he ever went to without me beside him. When he came out, he led me over to a bench in the clinic lobby. He wrote out "Multiple Myeloma" for me in the little notebook he always carried, and he said the doctor's prognosis was 5-6 years. I remember that I was very calm as I heard this. I was expecting it.
That night, we went out for Chinese food. Alan's fortune cookie said "Nature, time and patience are the best physicians." We didn't believe it, but when we got home, I typed that fortune into the screensaver on his computer.
Here is a picture of that bench; I went back and took a photo of it. Every time I see it, I wonder how many other people have sat on that same bench and heard their lives had changed forever.
Last week, our local myeloma support group held a potluck and some of us shared new stories with each other. Mr. B told me about a similar memory, the moment he realized his doctor might be suspecting myeloma and he couldn't tell his wife because it wasn't definite and he didn't want to frighten her. In our blog comments, Dr. F, in Rome, explained that his wife was expecting their child and he didn't want to upset her with the hard news. That is another shared experience: when you know or suspect, but don't want to burden your beloved with your fears.
I hope you will share your memories of the days when your life changed forever: I remember how isolated Alan and I felt until we found a community of fellow travelers. Your memories may help someone who's just sat down on a bench in a clinic lobby somewhere and heard the words "Multiple Myeloma" for the first time.
Sooner or later, everyone is a wounded storyteller.
- Arthur Frank
On a Friday night last fall, several of us from the Portland Myeloma Support Group went to the Newmark Theatre
here in Portland to hear Siddhartha Mukherjee
give a lecture on his book "Emperor of All Maladies-- A Biography of Cancer," which recently won him a Pulitzer Prize. He talked about his book being a biography in which the main character, Cancer, is not featured, but reflected in people's stories illustrating their experience of it. Some of the coincidences and connections he talked about were haunting.
After the lecture, my husband Alan was approached by a coworker from a job he had over ten years ago. I split off and talked to his ex-coworker's wife, while they caught up. I really liked her. Our conversation was strange because it was apparent that we were both caregivers on a cancer journey, but couldn't talk about it until we knew that our husbands were sharing the same story. Our hesitation seemed to be tied directly to the lecture we'd just heard-- it's not "if" but "when" your life is going to be touched by cancer. And our very real connection didn't address directly the cancers that colored everything in both of our lives.
That Friday had been great day because, for the first time in weeks, Alan had been able to eat three meals without suffering from G.I. issues. It was fun to be out with our gang. It felt like a 'normal' date night- a better-than-normal date night! However, by the middle of the night, Alan was violently shaking with a fever. I covered him in blankets, called the clinic, gave him a Biaxin, and began reading to him out of a book I checked out of the library, called "The Mythic Journey." The chapter I started reading to help calm the shaking was on 'Separation, Loss and Suffering', and was represented by the Biblical story of Job's Trials.
It's a very different story when you are reading it to your husband who has been living with a disheartening cancer diagnosis for six years, who is shaking with fever, whose feet are bleeding and who is struggling with G.I. problems at three in the morning. But its message about accepting the hand you have been dealt, and not looking for something to be 'fair' was the right story for both of us. I am still amazed that it was the one I picked up. Thankfully, by early morning, the fever was on the way down, and Alan was sleeping soundly.
Much of what has resulted from this myeloma diagnosis has been both bonding and isolating, though not usually packed together so closely. As one of my friends, who is also on a cancer journey, said, "One thing about troubled times, and 3:00 a.m.-- it just doesn't get any more real than this. Real, vivid, fully awake and aware." And that is atonement.
P.S. I have a friend who is a myeloma caregiver wife, whose husband is on 'day twenty' of an allo stem cell transplant. It will be his third transplant, and the process has been challenging and unusual enough that I ought to recruit her to write a 'guest caregiver blog.' They still have 70 more days of living away from home. I want to send them a list of movies with a theme about "beating the odds," and I would like help from you, fellow travelers -- Do you have a movie title that you think would uplift and entertain?
Quentin Crisp said, "Health consists of having the same diseases as one's neighbors." I have always thought that was a good explanation for why support groups work.
When Tom Blakney's wife Kay was diagnosed with multiple myeloma in 1997 in Seattle, WA, they attended the first meeting of a fledgling myeloma support group with five other families. A month after the group was formed, its leader, Ray Larsen, passed away. Tom volunteered to step in and lead the group.
Tom and Kay saw the value of a disease-specific support group though they had never participated in one before. They moved the support group to their church, Aldersgate United Methodist Church in Bellevue, where it continues to this day.
Kay had a cousin, Mary, who was also an important part of their support system. Mary often provided care for her cousin in the form of emails, lunches, walks and companionship. When Mary's husband passed away suddenly in a tragic car accident, their roles were reversed and Tom and Kay began to provide care and support for Mary.
In 1999, Kay lost her battle with multiple myeloma. Tom's orbit stayed with MM and the support group they had nurtured.
Tom and Mary fell in love and married, with the strong feeling that the hand of God--and the blessings of their spouses--were directing and embracing this union.
Tom and Mary continue to run the Seattle MM support group, The MM FIGHTERS! Tom refers to it as their "mission project." Because of their history as both "caregivers" and "cared for," caregivers have a special presence in the Seattle group. As Tom noted, "The quietest person in the room is often the caregiver to a newly diagnosed person," and they are often the ones most in need of empowerment. To address this, the caregivers and patients are split into two groups every other month. Many of the "seasoned" caregivers are savvy and up-to-date on MM, and they have a lot to share. Mary leads the caregivers' sessions, while Tom leads the patients' sessions.
After hearing about this, we tried that same splitting of caregivers and patients in our local Portland Oregon MM Support Group meeting last month. I think both groups were enriched by the depth of the communication that happened in each group. There are some topics that a caregiver can't talk about in a room with MM patients in it, and topics that are equally challenging for a patient to say to anyone but another MM patient.
The MM FIGHTERS! Support Group in Seattle is now about 200 families strong, mostly served by an active email/internet connection by Tom and Mary Blakney. The monthly meetings are attended by 30-45 patients and caregivers. The Washington MM community is thriving because of their unique partnership and commitment.
Caregiver stories fascinate me. Passion and survival are incredible forces. The journeys tend to have a much more powerful trajectory than would ever be imagined going in, and a great amount of energy. I suspect that many of the myeloma support groups have an interesting and inspiring history. How did yours start?
In the Fall of 2004, Mr. C and Ms. J were riding a bicycle built for two around Greece, celebrating Ms. J's return to health and strength after her multiple myeloma diagnosis in 1999 and her stem cell transplant in 2000.
Alan and I were in Greece at the same time, celebrating our 15th wedding anniversary. But we hadn't yet met Mr. C and Ms. J, and hadn't ever heard of multiple myeloma. For us, those two things wouldn't happen for another year, when in the Fall of 2005, back in Portland, Oregon, Alan was also diagnosed with multiple myeloma.
In 1999, Ms. J was diagnosed with MM after several of her vertebrae collapsed when she was moving a large vase in their home. Mr. C launched himself into the battle to save his wife, who at the time was given a 6-month prognosis. He did a lot of research, collecting 7 binders full of MM notes and data. Mr. C is a "Caregiver's Caregiver" He bought stock in Celgene, the manufacturer of Thalidomide, the latest (at the time) breakthrough drug for multiple myeloma, in hopes of getting the current information on what Celgene was developing, as one of their shareholders. When C & J determined that their best option was a stem cell transplant, Mr. C offered to buy their local hospital the equipment to harvest the stem cells
. In 2000, stem cell transplants were a relatively new and experimental process in Portland.
For C & J, the transplant was victory. Ms. J is a "Poster Girl" for successful myeloma stem cell transplants: It's now been 12 years since she had hers, with no follow-up drugs or treatment since 2000.
Through a serendipitous connection, Mr. C and Ms. J became the first fellow travelers Alan and I met after Alan's diagnosis, and turned into our first guides. They invited us over to their home to share their story and answer our questions. During that evening of listening to their saga, and wealth of fascinating anecdotes, they both shared a warning with us: After the successful treatment, with so much to celebrate and be thankful for, they nearly divorced. The strain of the intensity of the medical crisis had left them in very different places. Mr. C was vehemently protective and Ms. J was withdrawn and overwhelmed by what she had been through.
All of us become terribly caught up in the battle with multiple myeloma, we fiercely support and fight for our partners as well as for ourselves. Caregivers become hyper vigilant, and it's assumed patients will always be grateful for the help and love they receive, but it isn't simple for any of us. Often we become so accustomed to our roles that we can't re-adjust when it's time to resume "normal" life. C & J were to see how behavior patterns that were so necessary in the time of distress were pulling their marriage apart when the need for struggle was over. Fortunately they recognized the problem and were able to talk to each other. They found support groups and got help from a cancer social worker from the hospital.
Many of us don't get to that safe place where the myeloma is no longer the biggest fight of our lives. We move forward to keep from falling, seeking that balance, and a way to ride tandem for the duration of the trip. We both are pulling more weight than we ever thought we could as we negotiate the road ahead together.
As Lance Armstrong said, "It's not about the bike."
"It's a journey I would have never chosen."
For most of us, that is true. It's true for me. It's true even though, frankly, some of the gifts from being on this path have been huge. I wanted to write a bit about some people I have met in my six-plus-year odyssey as a myeloma caregiver wife, who DID choose this journey.
My husband, Alan, was diagnosed in September 2005. I jumped on the research and searched for resources quickly. The IMF was one of those resources. I remember ordering the large bag of pamphlets about multiple myeloma, and the arrival of the card for a Patient and Family Seminar in San Francisco. That seminar happened to hit on the day of my 50th birthday. We traveled from Portland to San Francisco, and were like sponges absorbing information. I remember the rush of calm when a patient panel included a 28-year survivor.
At a cocktail party that evening my extremely introverted husband whispered to me "Don't make eye contact!" He was shy in a room full of strangers. But Alan married an extreme extrovert, so of course I made eye contact, and invited a couple looking for a place to sit to join us.
It was Ms. J and Mr. J from Medford. They were delightful. Alan was immediately fascinated with Mr. J's extensive notebook of years of lab results. They both "engineer" types, and Alan started keeping similar spreadsheets of his lab results when we returned to Portland.
I've held onto this couple's story for years. They were several years older than us and had been dating for a long time before Ms. J said "yes" to a marriage proposal. The wedding was just weeks away when the myeloma diagnosis came. There was a lot of pressure from her family to call it off and to avoid a marriage as a caregiver to a myeloma patient. But she didn't back out.
How hard it must have been to choose to say "yes," not knowing what the future might be, and with well-meaning family trying to dissuade you. By the time Alan and I met them, things had developed into a pretty nice routine of golf and clinic appointments, and the marriage was a treasure to both.
We threw ourselves into our local myeloma community. Because of this, when friends of friends had a family member who had been diagnosed with myeloma, we often found ourselves connected with them to "show them the ropes." This was how I met Ms. C, who was gathering information after her fiancÃ© was diagnosed with myeloma. She was in her 40s and finishing a medical program, and he was approaching 50. She wanted to talk to someone about what it was like to marry someone with a myeloma diagnosis. I shared what I could about choices and obstacles.
Ms. C also chose to be the wife of a myeloma patient. In the brief window before her new husband began Revlimid treatment, she became pregnant. The couple's little son has the widest smile I have ever seen on any human being, and is the center of their universe.
Two weeks ago, I was at the IMF's patient and family seminar in Seattle, and met Ms. S, whose boyfriend of almost five years was recently diagnosed. She is selling her house, and he is packing up his, to move to the East Coast together, where they have decided his treatment will be handled. Her sweetheart asked Ms. S not to share his diagnosis with friends and family, partially, I think, out of worry over the judgments they might make on her choosing to accompany him on his challenging future. But she is smart, loves him, and is choosing with her eyes open.
I hope all three of these caregivers find gifts along the way that exceed the challenge of choosing to accompany someone with myeloma on this uncertain path. If your story is similar, you, too, have my extra admiration.