Pat’s Cracked Cup: Introducing My Myeloma Column And My Experiment
I was diagnosed with multiple myeloma during December of 2003 at a time just before social networking and blogging took off. I spent a lot of days hospitalized without Internet access. I look back and think about what a nice diversion and support it may have been to be able to connect with others via the Internet.
As I recovered and moved beyond illness to my “new normal” life, I lost track of much of the medical terminology of my case. I also wanted distance from all of that. However, I have this condition that follows me like a shadow. I do not want to drift too far away from that reality.
A few months ago, I discovered The Myeloma Beacon and noticed that many of the people sharing on this site are about my age and younger. I am beginning this monthly column to shed light on living with multiple myeloma as a single woman.
My “cracked cup” refers to a small ceramic pot that I made several decades ago. Despite the flaws, it has survived dozens of moves. The cracked cup holds my story:
Every three months, I visit the hematology clinic at Roswell Park Cancer Institute. A few weeks ago, the nurse practitioner entered the exam room with my lab printout in her hand and said, “You are perfect.” Good news is what I want to hear. Still, I do not feel perfect.
I read somewhere that the body with cancer is like a house that has been burglarized—you still have to live in it after the invasion, but you can never really trust that everything is okay and safe.
Let me step back, my multiple myeloma journey began in 2002 while I was living in Denver.
I experienced a string of curious back pangs and a couple of really bad colds. A bothersome hip pain appeared while walking the hilly streets of San Francisco during a summer vacation. A week later, I stepped off a curb a little too hard. My back went out the next day. I struggled to get out of bed each morning to carry on with the ordinary activities of my two jobs. Walking was difficult, but a healthy fifty-one year old woman with a busy life does not expect worst-case scenarios. During the next two months, I visited a doctor, chiropractor, and ER in my search for relief.
The meditation teacher, Chögyam Trungpa often told his students, “Live your life as an experiment.” My personal experiment came alive when I was admitted to the hospital and diagnosed with kidney failure, fractured ribs, and fractured vertebrae due to stage III multiple myeloma.
I spent most of that December hospitalized and began to learn a new language of blood, bone, and chemistry. My winter was filled with medical appointments, treatment, and rest. I lost my hair and surrendered to getting well. Stepping back to allow myself to heal meant leaving both of my jobs behind.
I was told that multiple myeloma is a chronic condition that can be managed. What did this mean? Nobody ever said I would be cured. However, I discovered that living one breath at a time is quite manageable.
The support and encouragement of family, friends, doctors, and visiting nurses was remarkable. As an unmarried woman accustomed to an independent lifestyle, I had never before had so much help.
Statistics told me that this disease most commonly strikes 70 year old men. I did not fit that model, and I could not relate to the dismal news about survival rates. By spring, I had completed several rounds of chemotherapy with vincristine, doxorubicin (Adriamycin), and dexamethasone (Decadron). I visited a specialist who recommended an autologous stem cell transplant as soon as possible. He told me it was “the next best thing to a cure.”
I needed to understand this mysterious process in my own simplified way by accepting that the human body is a hardy machine. She constantly produces shiny new stem cells that grow into both red and white blood cells. These cells can be withdrawn from the body and frozen while a patient is given a high dose of toxic chemical that eliminates every dysfunctional myeloma cell. All other cells are sacrificed in the process, but the body is able to save herself when the frozen stem cells are returned to the bloodstream.
Could this actually work? I had to trust my somewhat broken body to produce viable stem cells that would be powerful enough to “re-boot” my entire system to begin the natural cell-making process.
I chose to undergo the suspicious sequence of events called a stem cell transplant. The professionals warned that the ordeal would weaken me. They were right—perfectly good meals tasted like cardboard and drinking water was metallic. All the unpleasantness is best forgotten now because the gradual regeneration of health has been a celebration—a kind of rebirth. The renewal of taste buds was a miracle that made food my new medicine. My hair grew back, and my energy returned.
By fall, I was well enough for a vertebroplasty procedure to stabilize three of the vertebral fractures. I felt a noticeable improvement almost immediately. I decided against the second stem cell transplant that was suggested, but continued with infusions of a bisphosphate for another ten months to strengthen my bones, and my back is more limber now.
I created a bumper sticker that reads “Healing is low-tech.” Medicine may be high-tech, but my therapy is ordinary life—walking, yoga, swimming, meditation, nutritious food, red wine, pure water, and sunshine.
My experiment was tested recently when I fell on a concrete sidewalk and landed on my knees. My bones did not crumble. I have been in complete remission for five years. Recovering has instilled confidence as each perfect lab report or skeletal survey reminds me that the intruder called myeloma is causing no harm. I breathe in and I breathe out—the experiment continues.
Pat Pendleton writes a monthly column for The Myeloma Beacon. She has lived in California, New York, and Colorado since the 1970s. An artist and counselor, she has worked for art businesses, nonprofit groups, and various healthcare organizations. Pat now lives in Buffalo, New York, where she works on her creative projects and is a freelance writer for online sites, including livestrong.com. Movie-watching has become her personal therapy in recent years, and she maintains a film blog called Pretty Good Movie.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
While reading your article, it reminded me of the most difficult time in my life. I too found myself in the hospital, kidneys shutting down, broken arm and diagnosis of Multiple Myeloma. I was diagnosed at 56 years old, Dec 2008. I have not had the stem cell as of yet, but fortunately remain in Smoldering remission for the past year and a half. It is scary sitting in the drs office waiting to hear how I am doing each time I am retested.
Thank you for sharing your story, it lets me know I am not alone on this journey.
Keep staying strong as you are!
Thanks for the response, Debbie. The beauty of this site is knowing others are experiencing similar things. Be well.
Thank You for your story. My husband (52 yrs old) is 31 days post stem cell transplant. We just found out today that his myeloma was barely detectable, and his blood counts were on the rise and his cells were engrafting...it's been a long wait to hear those words. We now await the bone marrow biopsy results. He was diagnosed Nov '09. It has been a long year. We too have been blessed with love and support of family, friends, and medical staff. It gives us unbelievable hope to hear your story and know that time is ahead of us. We wish you continued good health and will look forward to your column.
Love, Hope and Prayers
Sincerely,
Kathryn and Gordon Johnson
Dear Pat, I am from sveden and as I look around at the place, where my myeloma is observed, I see many younger people. I'm 35 with two small kids - and I'm not the only one of this age. At ASH in Orlando there will be discussed why our disease affects more and more younger people. But - of course, I want to see my children grow. What do you think, Pat, how far are we away from a real discease control and an overcoming of the drug resistance that causes relapse? When will we speak from myeloma as chronic myeloma? Very difficult questions, I know. Thank you for your column. Peter
I find it remarkable, Pat, that at Stage III myeloma 7 years ago, you are where you are now, "healed" and in complete remission. It is encouraging that we look at myeloma as very individualized, and each of our bodies work as amazing machines. I am interested in knowing your myeloma genetics? One thing, the pre-transplant treatment (melphalan for me) doesn't always eliminate every myeloma cell. After my ASCT there was residual 0.1 myeloma which continued to double for 9 months and now I am on Rev/dex. This was a disappointment since I have always been healthy and had no myeloma symptoms except anemia. As for watching films, this is my sanity saver -- I particularly watch the indies and foreign films -- something about reading subtitles is very calming and soothing, and I am taken away from the reality of having to live with a mysterious "orphan" disease.
Hope you find enough sunshine in Buffalo to give you the needed Vitamin D! Suzanne
Love your "cracked cup", I have a few little mementos around my life just like that! I'll look forward to your column.
Kathryn,
Thank you for reading. I wish your husband well...healing is a long process.
Pat
Peter,
The way I understand viewing MM as a chronic condition is that there are many possible paths of treatment--Try this--try that. I think finding a peaceful life is somehow important. Thanks for your comment, Peter. I wish you well.
Pat
Thanks Lori--keep reading.
Hi Suzanne,
I am not sure what my myeloma genetics are, but I do have some family history of cancer. I began with about 96% myeloma cells and after four rounds of VAD chemo it was down to 4%. I received Cytoxin prior to the stem cell retrieval and high-dose Melphalon prior to the transplant. It took me a year to achieve to complete remission. I am very attuned to vitamin D. I take supplements and risk a bit of sunbathing without sunscreen. Each person (whether or not they have cancer) has their own unique disease. It's all quite an amazing mystery.
Thanks for your interest.
Pat
Pat -- It might be interesting to you to find out what abnormalities your myeloma cells hold, if any. At diagnosis, you must have had the FISH done on your myeloma cells? The cytogenetics will show translocations or deletions which are prognostic factors. Now drs. can tailor treatment more individually based on the genetics of a person's myeloma. I have the del 13q and t(11; 14). Lately, the 13q drs. say is overcome by the novel drugs. I am always curious about patients when they speak of their myeloma, for as you say, we each have a unique disease. The genetics of the myeloma hold many keys. Suzanne
Dear Pat, thank you for your kind response. Your philosophy of "just being" is adorable. But i have to admit: I'm not peacful, I'm very, very angry with myeloma. Know, that mm cells doesn't care at all!
Anyway, in my opinion we need urgently ways to speed up research more. The admirable Kathy Juisti is right in my opinion. Take Velcade - they made $1 billion (for a great agent, of course), but Millenium didn't develop a Velcade 2.0 till now. Same Velcade as 2003. Perhaps two things have to come togetheer: A peaceful mind and better drugs. I look forward to you colum! Best greetings to buffalo. Peter
I had a auto sct Sept 2nd and I'm still dealing with side effects one of which is the taste bud issue that you talked about. Perfectly good food tasting like cardboard, etc. Its been only 3 months for me since the sct so I'm hoping this will past and my taste buds will come back to nomral. How long did it take you for your taste buds to recover? I agree it will be a joy to be able to enjoy my food again.
Thanks for sharing your story!
You are right, Peter--there is a lot to be angry about.
Hi Robert...I seem to recall the taste buds may have come back after 2-4 months--partially. It was probably closer to 6 before it felt close to "normal." Thanks for reading...Pat
Dear Pat, I find your story so inspiring. I was recently diagnosed with myeloma and in the coming months will be visiting a stem cell transplant center at a major hospital to learn more about the process. You have given me the courage to face what lies ahead with more hope than fear, and I look forward to your next post. Thank you for sharing your experience and optimism! Linda
Linda Mc...I wish you well as you navigate the MM experience.Thank you for the inspiring comment! Pat
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