As you can see, my initial stem cell harvest
I will get my final Velcade/Decadron/Aloxi chemotherapy Friday, September 9 2011 at Dr. Moore’s office in Fort Collins. Then, I’ll take oral steroids over the weekend.
I’ll be admitted to the University of Colorado Hospital on Monday September 12 2011 and given the melphalan chemotherapy that will kill all of the contents of my bone marrow along with more Velcade and Decadron.
On Tuesday, September 13 2011, I get my own stem cells back via transfusion. This is considered Day 0 of the Transplant. The melphalan will make me
Recently, at twilight, a deer appeared in my driveway. Silent as the emerging darkness, she stepped carefully onto the gravel. Behind her, a creamy froth of clouds smeared the horizon; crickets chirruped in celebration of the declining day. I watched as the doe slipped into the tall field grasses. After several minutes, I walked out to where she had crossed the road and exposed herself to danger. The failing light hid her path. She had vanished, leaving behind only the scuff of her hooves in the gravel.
My cancer, multiple myeloma, is equally enigmatic. One moment, it is here and the next it is gone. I carry all the evidence of its existence but the substance cannot be grasped. I rely on my support group, sponsored by the Leukemia and Lymphoma Society, to keep me grounded in the realities of this disease. At the monthly meetings, I interact with individuals whose various presentations of the illness cover the entire spectrum of multiple myeloma.
Always, there are new faces seeking to buttress themselves against the shock of a cancer diagnosis. Others are long-term members of the group, survivors of up to a decade or more of treatments. Some, like myself, have a passive variation. We responded well to our choice of therapy. A few have complications from the MM, which has advanced and evolved in spite of numerous therapies.
Due in part to my association with this group, I became a “First Connection” volunteer with the Leukemia and Lymphoma Society. Periodically, a social worker with the LLS puts me in contact with a patient who has multiple myeloma. The idea is simple: connect an experienced person with a novice. In the course of the last eighteen months, under the auspices of this program, I have spoken with individuals from all across the United States. Most often, those I speak with are considering a stem cell transplant.
Controversies surrounding transplants have blossomed due to the recent success of “novel agents” like revlimid and velcade. What was once the absolute standard of care, SCTs are now an exceptional treatment, recommended on the one hand and discouraged on the other. Some clinics believe the transplant procedure is too harsh on the body. They argue that the latest drugs deliver comparable remissions with less risk to the marrow environment. Other institutes extol the virtues of a transplant. They assert that a SCT (or two) plus extensive maintenance with the new drugs can deliver remissions that, for some patients, border on a cure. What’s one to do?
I can’t answer the question as to which protocol is best. This weekend I am celebrating the three-year anniversary of my own transplant. I naively went forward with the procedure seven months after diagnosis. It worked well for me. I enjoy excellent health; I have not had so much as a cold in over a year. The cancer boldly appeared in my blood when I sought the cause for persistent anemia. Then, it retreated when we fought back with chemo and a transplant. We still detect its footprint in my monthly blood labs. Essentially, though, it is well behaved… for the time being.
I keep it simple when talking with a newly diagnosed MMer through the First Connection program. Transplants are not, in and of themselves, curative. The procedure is arduous but I emphasize its tolerability. You will feel crummy for a period of four to six weeks. Following that, recovering your stamina will be slow but sure. Transplants are relatively safe. It’s not possible to foretell how you will respond; yet my leap of faith succeeded and I am not unique.
Everyone must make his or her own decision. Therefore, it behooves you to become informed. That is the first step in a lengthy journey with this disease. Yes, I was naïve with regard to stem cell transplants. Nonetheless, my wife and I performed the due diligence necessary to “own” our decision to undergo the procedure.
Since that time, new treatments have advanced quickly. Now, the options are greater. Patients enjoy a wealth of choices. However, the decision on how to go forward can be confusing. Accordingly, one must be thorough in determining what works best for them. My choice had as much to do with logistics as it did an assessment of what I thought I could handle. Don’t be paralyzed by your doubt. Accept the uncertainty, trust your decision, and, most importantly, fight back.
From patientpower.info. Dr. Berenson talks about Zometa, Vitamin D, Calcium, Stem Cell Transplant and other treatments for multiple myeloma. Myeloma Update from ASCO from Patient Power® on Vimeo.
I’ve been traveling.
Recently, my wife and I attended the graduation of our niece from Whitman College in Washington. Tillie, the daughter of my wife’s sister, received a degree in Theatre with a minor in Spanish. She landed a much sought after two-year position at the college admission office, which will provide her income and experience as she considers grad school. Her parents work for the State Department. Their children were raised for the most part overseas. Tillie and her brother, also a Whitman student, are exceptionally bright cosmopolitan kids.
Following graduation, our two families vacationed in Central Oregon. The Cascade Mountains divide the state into yin-yang topography. To the west are brooding fir forests, the fertile Willamette River valley, and damp coastal areas. To the east, pine forests, high desert, and dry wide-open spaces prevail.
When I was Tillie’s age, I spent several years in Yosemite National Park. More than the grandeur of its granite cliffs, it is its pine forests that resonate in my soul. The trees of the eastern Cascades resemble those of the Sierras in California. The species of pine are different but the smells of the needle strewn forest floor and the airiness of the pine canopy invoke memories of my youth.
Our families are compatible. We have vacationed together for 15 years or more. Normally, we rendezvous in August at the same Central Oregon resort. Due to graduation, this year we chose the week before Memorial Day when we were already gathered together on the west coast. The weather was not conducive to swimming or other summer activities. Instead, we bundled up for long walks, read books, and played parlor games in the evening. All in all, we found the time equally relaxing without the sunburn.
Back home, the lushness of spring, enhanced by late showers, gave our property a hint of abandonment. Weeds advanced on my perennials. Knee-deep grass on the lawn begged to be mowed. I eagerly set about catching up on outside chores.
Once I minimized the look of neglect in my gardens, I sat on the porch with my cat, Spanky. We basked in the sun’s warmth, sheltered from the breezes. Together, we watched as the wind wove tapestries amongst the burgeoning trees, entwining the branches on the rise of a gust, and then untangling the mass as the current lapsed. I had enjoyed our time on the road but it felt good to be home.
In addition to these domestic comforts, my mood is buoyed by recent events from the world of multiple myeloma. I have dealt with this blood cancer for 3 1/2 years. The sense of its passive/aggressive nature is palpable. In some patients, treatments struggle to hold back the progression of the disease. In others, for reasons not clearly understood, the cancer dawdles; it shows little enthusiasm to proceed as long as care is provided. In the last ten years, vigorous research into remedies made significant improvements in the lives of those patients in the 2nd group.
The first event that gave me hope came from the International Myeloma Workshop held in Paris. Long-term studies indicate that revlimid maintenance treatment following a stem cell transplant extends remissions. Furthermore, the data confirms that patients undergoing this protocol live longer.
The second promising news about myeloma came from a speech given by Kathy Giusti, the CEO of the Multiple Myeloma Research Foundation. She delivered the commencement address to the graduating class of the Harvard Business School, her alma mater. What I appreciate about her remarks is the affirmation that sound business practices can speed up the FDA’s regulatory process. Treatments move from the bench to the bedside in years, not decades. Research for solutions to MM thrives under her excellent leadership.
My cancer is stable. During the last two cycles of treatment with revlimid, I did not experience any physical letdown. I sleep well. My energy is good. I work full time and pursue my favorite activities. I feel confident about my health, optimistic for my future, all the while wary of the staying power of multiple myeloma. If I can keep the disease out of my bones and kidneys, then I should be around for the graduation of Tillie’s younger brother, my nephew Joey. He’s got three years to go. That’s a realistic goal; one I expect to make.
Spring is putting on airs, choosing to arrive fashionably late. Each year our community celebrates its agricultural roots with Blossom Weekend. Normally, pear and apple trees, festooned with an array of white and pink blossoms, attract thousands of visitors. They arrive like bees, pollinating local merchants with disposable income. This year, nary a blossom presented itself. Instead, a cold windblown drizzle greeted the tourists. T. S. Eliot got it right when he said, “April is the cruelest month.”
It was two years ago in April, that I started back to work following a lengthy break to undergo a stem cell transplant for multiple myeloma. Other than periodic checkups, I have not missed a day. This January, I began a regimen of oral chemo with the wonder drug, revlimid. I take a daily maintenance dose of 10mg, three weeks on, one week off.
At the end of the last cycle, I experienced a significant drop in my energy level. For three days in a row, all I wanted to do was nap. At work, I felt as if I were walking uphill in sand. I attribute that slump to a low percentage of red blood cells. Soon, my energy picked up as my body replenished itself during the break.
The drug has slowed the progression of my disease. Dr. M and I would like to see a further drop in the cancerous cells, which hold steady after months of slow growth. Accordingly, we will continue with this treatment into the fall as long as the side effects do not create more problems than the drug solves. The goal is to achieve another sustained remission.
Doubt, hope, physical side effects, remissions that tease us, and relapses that punish us; these are factors that make up the complicated equation of living with this blood cancer. I meditate about these things on my blog and my ruminations help me to work through the stress associated with a life threatening illness. The only thing, however, that truly alleviates the alienation of a cancer diagnosis is interacting with others undergoing the same experience.
Each month I attend a multiple myeloma support group hosted by the Leukemia and Lymphoma Society. The value of these meetings extends well beyond their educational promise. I leave each get together not only wiser but also spiritually refreshed. It never fails that I glean something from the two-hour session that changes the way I think about others and myself. This past week was a general meeting. Rather than listen to a medical expert enlighten us about the disease, the moderators asked each of us to give a brief history of our diagnosis, treatments, and something we had learned along the way.
One gentleman’s moment stood out. He recounted how a counselor encouraged him to participate in art therapy as part of his recovery from a stem cell transplant. This opportunity enabled him to renew his values with a focus on creativity, purpose, wonder, discipline, and courage. Then, he proceeded to introduce us to the Jewish concept of Dayenu.
Dayenu is a song that is part of the Jewish holiday of Passover. The word “Dayenu” means approximately, “it would have been enough for us.” Essentially, the song is about being grateful to God for all of the gifts he gave the Jewish people, such as taking them out of slavery, giving them the Torah and Shabbat, and had God only given one of the gifts, it would have still been enough.
Attending a support group will not cure my cancer. Nevertheless, it does cure me of the dread that occasionally shadows my optimism. Catharsis often accompanies the sharing. We testify to our individual fears. We bear witness to what has been lost. In addition, we rejoice in what renews us. Together, we discover that no matter where we are with respect to the disease, diverse paths to affirming life exist. Sometimes we just need another to point the way.
Soon after the New Year I resumed my six-mile walks. Wet weather interrupted some outings; others surprised me with unexpected mid-winter sunshine. I work fulltime but my job is not physically demanding. Accordingly, these walks provide the best barometer of my health. This is especially so now that I have restarted drug treatment for cancer.
Thus far, I seem to be managing the side effects of the oral chemo. The peripheral neuropathy in my feet has increased, pestering me with nerve pain. At times, it feels as if my feet are burning. I also experience muscle cramps in my lower legs. Both conditions, though, are transient; they come and they go.
If my support group is any proof, each presentation of multiple myeloma has its own temperament. Mine acts indifferently. Following my stem cell transplant, the disease remained stable for a long time. Dr. M and I watched over the last several months as the level of bad protein in my blood slouched along toward a relapse. We chose to begin treatment before the movement gathered momentum.
For oncologists, the bad protein, commonly called M-protein or the M-spike, constitutes the unique fingerprint for multiple myeloma. Remember, this is a cancer of the plasma cells in blood. Healthy plasma cells create antibodies to fight infection. Those antibodies reveal themselves in the blood as proteins.
Proteins are the workhorses of a cell; they carry out the bulk of cellular functions. With multiple myeloma, the plasma cell/antibody/protein is abnormal. It occurs in conjunction with healthy plasma cells but provides no benefit. Instead, the switch for cell division is stuck in the “on” position allowing it to replicate itself at a torrid pace. Furthermore, the myeloma overrides the process of programmed cell death. Consequently, it floods the marrow environment, spills out into the bloodstream, and, well… there goes the neighborhood.
The recent death of Geraldine Ferraro underscores the tenacity of this disease. Ms Ferraro lived 12 years after her diagnosis. She utilized the prominence of her political career to advocate on behalf of all patients with MM. Ultimately, efforts to control the cancer’s prolific growth profile failed. Everyone in the myeloma community mourns her passing.
My personal disease profile continues its lethargic behavior. As I mentioned, the M-spike measures the concentration of the bad protein in blood. When tested two weeks ago, my number had decreased slightly. It’s too early to know if the new drug I’m taking caused the reduction. But I’m optimistic.
It’s easy to get hung up on one’s numbers. This is particularly so during the winter months when much of one’s activities are internalized because of the weather. The daily pill taking leading to each month’s labs kept reminding me of a reality it would be nice to forget.
Still, life goes on outside the internal workings of my blood. Recently, I found distraction from the tension of waiting for the periodic results. Our kitchen, long neglected, underwent a renovation comparable in degree to my stem cell transplant. We demolished the old and rebuilt it anew from the ground up.
We bought our home in 1978. It started out as a 600 sq. ft. bungalow but grew with our family. Over the years, we added one room after another, including a second floor. The kitchen, however, was always “next in line” for improvement. We had many setbacks to our good intentions: car repairs, college tuition, medical bills; it was always something.
Now, at last, the work is completed. The mild weather in January and February helped make the upheaval of our living space tolerable. We waited 30 years for this and six weeks of frozen dinners during construction seemed a small price to pay. In fact, the delayed gratification due to previous sacrifices only sweetens our appreciation of the finished product.
The kitchen overhaul had helped me to focus on matters other than my health. From hereon, spring will take over where the renovation left off. Yesterday, between rain showers, I scratched with a hoe at the perennial beds in my garden. Afterwards, my youngest son joined me for a therapeutic walk. All the medicine I need, at least for my soul, can be found in the verdant pastures, the activity of wildlife, and good company.
Another 30-Something diagnosed with Multiple Myeloma.
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story!
Where were you born and raised?
I was born in 1970 in Massachusetts where I spent my entire childhood.Where do you currently live?
My husband and I and our 2 sets of twins (ages 7 and 10) live in Brookline, New HampshireWhen were you diagnosed and how old were you?
I was diagnosed on June 10, 2011. I was 39.Did you know what MM was prior to diagnosis?
I never heard of MM before my diagnosis.Is there anyone else your in family with MM?
No.What led to your diagnosis?
I suffered a broken sternum in January 2010. In addition, I had a plasmacytoma on my chest which was removed in May 2010. It came back on June 3 as a malignant tumor.How many times were you referred before actually being diagnosed?
Right after my results from the plasmacytoma I was referred to an oncologist. I received a bone marrow biopsy and it came back positive for Mulitple Myeloma.Where have you received treatment?
I received Dexamethasone, Revlimid and Velcade for 4 cycles at my local Oncologist office in New Hampshire. I received an Autologous Stem Cell Transplant under my Oncologist at Dana Farber in Boston, MA on 11/18/2010.Explain your treatment history:
7/2010 : Started RVD11/2010: Autologous Stem Cell Transplant2/2011: Will begin 2 cycles of RVD followed by Revlimid maintenance therapy.Why did you or your doctor choose a specific treatment?
It was in my doctor’s opinion that I was a good candidate for stem cell transplant because of my young age and physical health.What has been the side effects of the different treatments?
I have had minimal side effects from treatment. I had some mild peripheral neuropathy during my treatment with Velcade. However, I have not experienced any neuropathy since I stopped treatment. I had a lot of sleep deprivation from the Dexamethasone. Of course hair loss as well. I had my Melphalan dosage in November and I still have no signs of hair growth.What has been the hardest thing about your MM journey?
The hardest thing for me during my MM journey is the realization that I have an incurable cancer. I am trying very hard every day to treat this as a chronic disease, however MM is currently an incurable cancer. I am waiting to hear my M Spike results since my transplant. Physically I feel very strong and I have recovered quite well. I have had incredible energy to keep up with my kids since I have left the hospital. However emotionally it has been so difficult. I can no longer plan too far into the future. This is so difficult when you have 4 children who are growing and changing every day. Currently I feel like I am in limbo. I have spent the last 7 months fighting this disease with intense treatments. And now I am waiting to hear how effective the treatments have been and getting prepared to start treatment up again. It is very challenging to begin living my “New Normal”. I am hoping that someday I can wake up in the morning without cancer being my first thought.What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
A supportive family and friends will get you through some of your darkest days. It is so hard at times to ask for help. But learn to ask. My community, family and friends have been so supportive with meals, babysitting, and prayers.How have you been able to stay positive and encouraged in your MM journey?
My children and husband are the reason I am doing so well today. They give me such strength. Children are wonderful distractions and show such resilience. In addition my friends and family have given us such support and love. While I was in the hospital my husband and children received so much support. I was able to focus on me and my health because I knew they were all in good hands. I continue to be encouraged by other people’s stories. I constantly read other people’s blogs and surround myself with positive people.After being diagnosed… What perspective was changed the most?
I would have to say appreciating the true beauty in all the little things in life. It is so easy to get caught up with our busy lives. I no longer take for granted all the little blessings in life like hearing my kids giggle or sharing special moments with my kids. I no longer focus on what I want in the future, but rather, enjoy all that I have today. Taking time out to spend with each of my four kids, my husband, friends and family that is everything to me.Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No.What MM sites or blogs had you found good information from after diagnosis?
Of course Multiple Myeloma for Dummies, Pat’s Place at Myeloma Beacon and Julie’s Myeloma Moments. Also I have blogged my journey at jeanielivingwithmultiplemyeloma.blogspot.com.***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story!
Recently, the cat who keeps me company at the Post Office, Curly, disappeared. She adopted our office as her home seven years ago. She spends her day sleeping in a chair atop a red, white, and blue blanket knitted for her by one of our customers. At night and when the office is closed, we place her outside to fend for herself.
This year, winter came early to the Hood River Valley. Our first snow fell on November 9th. Then, just in time for Thanksgiving, the weather turned cold, very cold. While acclimating to the season’s onslaught, I was also grappling with my doctor’s suggestion to renew treatment for my blood cancer, multiple myeloma.
I understand the proactive thrust of Dr M’s idea. Clinical trials demonstrate that low dose oral chemo can extend remissions in patients who have undergone a stem cell transplant. Nonetheless, I waver. The fact that I feel good makes me hesitate. Why set the clock ticking on treatment now? Shouldn’t I wait until I’m symptomatic?
As I contemplated what to do, the cold snap broke and torrential rains threatened to flood the valley. Last week, the snow returned. Several brief storms dusted the trees, decorating the shoulder of each branch with white epaulets. Then, the full moon joined with the solstice and bore the gift of a lunar eclipse. In years gone by, such heavenly triangulation would have prompted pagans to sacrifice an animal. After all, angry Gods must be appeased.
That was when Curly disappeared.
In a world full of unpredictability, Curly’s steadfast appearance at our back door each morning, is appreciated. Throughout my workday, the transactional banter that accompanies the selling of stamps often includes an inquiry about Curly. Customers want assurance that she is safe. In this way, she acts as a touchstone helping to forge bonds in the community that would otherwise be absent.
After four days of worrisome questions from admirers, my faithful companion reappeared. She seemed no worse for wear, just hungry and sporting a suspiciously torn claw on her back foot. I theorize that she entered a building from which she could not escape.
Curly’s return brought to mind an old folk song: The Cat Came Back. The tale it tells speaks to the resilience of cats, uncanny in their ability to land on their feet in the direst of circumstances. As the song progresses, it takes on sinister overtones. The cat not only comes back but does so with a vengeance that grows in proportion to the effort to be rid of him.
Something similar occurs when cancers relapse. Remissions imply that one’s cancer has disappeared. With many blood cancers, however, the disease exists undetected in a dormant state. It is myeloma’s capacity to evolve that makes it, thus far, incurable. The cancer has resourcefulness equivalent to a cat with nine lives; its true regenerative force, though, may actually be infinite.
In a New York Times article, The Cancer Sleeper Cell, by Siddartha Mukherjee, the author postulates: “Chemotherapy unleashes a ruthless Darwinian battle in every tumor. A relapsed cancer is the ultimate survivor of that battle, the direct descendant of the fittest cell.”
Hence, my reluctance to begin a regimen of chemo; I wonder if doing so when my quality of life is high not only eliminates an option but also makes the cancer smarter. Like Curly, I do not want to enter a building from which I cannot escape.
I am a pragmatic optimist. I respect the ingenuity of life in all its forms, be it a life threatening cancer or a cleverly resourceful cat. I also admire the persistence of science. Right now, I’d say the brilliance of researchers is gaining on the lethality of MM. One of these days, perhaps in my lifetime, the cat, or rather, the cancer, will not come back.