Pat’s Cracked Cup: The Seasons Of Living With Multiple Myeloma
This is my 27th and last column to appear in The Myeloma Beacon.
I wrote my first column in November 2010. At that time, I was seven years past my initial diagnosis and had been in remission for five years. In that first column, I wrote about the experiment of my cracked cup, which is an analogy for figuring out how to live with my flawed but functioning body.
“There is a crack in everything. That’s how the light gets in.” Leonard Cohen’s famous lyrics reveal so much about hardships of all kinds.
Living through (and with) multiple myeloma has brought me into a new and surprising place in my life.
After achieving remission, the winter of my illness blossomed into a spring of light, growth, and wellbeing.
Now that I have been in remission for nearly eight years, I seem to have completed the spring season of this experience, and my column also feels complete. I have shared my experience as a single woman surviving the ordeal of myeloma into a time of recovery, healing, and long-term remission.
As I bring my column to a close, I also reflect back to my first article, and one quote comes to mind: “The body with cancer is a like a house that has been burglarized — you still have to live in it after the invasion, but you never really trust that everything is okay and safe.”
I’ve been living in my burglarized house for nearly 10 years, and over time it has become a place of greater trust.
The opportunity to tell my story over and over as a columnist here has been a gift. In addition, reading the stories of others has given me new perspective. These stories become part of who we are — telling and retelling our unique version of what happened is truly healing.
I recognize how fortunate I have been to have had such a long remission — simply lucky. A relapse may be right around the corner for me, but I also consider the notion that one day I may look back and realize that I was actually cured.
I am hopeful that I have entered a long summer season of “my experiment,” in which I can take a break from myeloma. Mostly, my focus now hovers over the happenings of daily life as an artist, community member, partner, friend, daughter, sister, and aunt.
I recall the perplexing news of my advanced bone fractures and kidney failure that accompanied my stage III multiple myeloma diagnosis in 2003. Although I was never given the FISH test to determine the genetics of my particular disease, I have wondered how that information may have impacted my treatment and state of mind.
I received the standard protocol for treatment in 2003: several rounds of chemotherapy with vincristine, doxorubicin (Adriamycin), and dexamethasone (Decadron) over a 3-month period of time. I also received infusions of the bone-strengthening drug Zometa (zoledronic acid) that continued for 18 months. I began the autologous stem cell transplant process two months after chemotherapy ended, as I was urged to do. My response was good.
At that time, a second tandem autologous stem cell transplant was also encouraged, but I declined. I also opted out of maintenance drugs. Those were important decisions to make that could have been the wrong move for me. Somehow, though, I knew that my body could take no more intervention. Developing a new relationship to my body and intuition has been a large part of maintaining remission.
Soon after my diagnosis, I relied upon strong fentanyl patches for the bone pain, but once I was gaining strength after the transplant, I had the three lower fractured vertebrae stabilized with vertebroplasty. This procedure did not restore the lost four inches of height, but it was quite successful in eliminating my pain. As time passes, I am hopeful that the cement lodged inside my bones will hold together.
“Time is a mountain lion,” wrote the author Raymond Carver. Time is the great illusion. Still, the passage of time has given me perspective that could not have been conveyed to me at the beginning of my myeloma experiment.
Medicine may be high-tech, but healing is often simple and low-tech. The activities of ordinary life – walking, swimming, yoga, meditation, nutritious food, red wine, pure water, and sunshine – are good medicine.
To those who are newly-diagnosed, I offer a few suggestions:
1) Research will often reveal specialists and cutting-edge treatments that are available to those who are able to travel and pay out-of-pocket. If you are relying on immediate insurance-covered care, it is best to surrender to the treatment options available to you.
2) Gather information and knowledge, but do not buy into all the statistics you read. You are not an average case — you have unique circumstances.
3) Take advantage of social workers who know about resources for grants, loans, and support groups. Other kinds of practical help, such as complimentary house cleaning, massage, dining, airfare, and concerts are frequently available to people in treatment.
4) Accept offers from friends and family for help.
5) Don’t feel guilty for resting too much. There is a fine balance between pushing oneself to do more and also allowing time for doing nothing. Sleep and rest help the body to regenerate.
6) Apply for whatever financial assistance may benefit you (such as family leave, disability insurance, or Social Security Disability Insurance) sooner, rather than later. You will need time to slow down your life in order to recover.
7) Find humor and inspiration in books, films, and everyday life.
The Myeloma Beacon community is a wonderful resource for patients and family members to share information and stories. Thank you to all who have read this column during the past couple of years. I have gained so much here, and I will continue to be a reader.
Pat Pendleton is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
There are no words to describe the strength I have derived from everything you have shared with so many people. Your strength, motivation and regular updates certainly have made my journey easier to deal with. You also made me understand that as crappy as I might feel at times, there are so many more who are facing far worse.
This may be the end of your column but be sure that there must be many more out there to whom you have given strength and comfort to.
Thank you, good luck and hopefully we will hear from you again sometime in the future!
Kind regards from far away South Africa.
Mike
I am going to miss you. Godspeed. Terry
Pat I wish you all the best for a continurd long remission and hopefully cure of your myeloma. I am going to miss your columns, they were positive yet realistic and definately a "mature" voice for those of us on their own journey. I don't mean mature as old, which you are not
but mature in that you've been able to express well what many of us long term survivors have experienced.
I understand about wanting to get on with your life and put myeloma behind you but I would encourage you to post occasional updates to let us all know how you are doing. Maybe just semi-annually or so when you go for checkups and continue to get good news.
I think I speak for many of the readers that we care about you very much here and hope for nothing but the best for you in the future.
Thank you for sharing your wisdom.
Dan
Thank you very much for sharing your experience. It was great help for me.I am living with amyloidosis (AL) that affected my liver. I am now 1 year after SCT and feel well. My disease is very close to multiple myeloma and treatment are similar.
Thaks again and continue to have great health.
Gaetan Chevalier
From Quebec city, Canada
Hi Pat, I have always really enjoyed reading your columns and will miss your contributions to the Beacon! I hope that your health continues to be really good, and that you keep up your writing too! I think you have a real gift for inspirational writing! If you have a change of heart would love to read more of your columns too.
Ten years after...and you're still in remission....WOW!
May the road rise up to meet ye, Pat!
Steve
Best wishes for continued remission. Your remission is what we all strive to experience.
Although you won't be writing your column, don't be a stranger to the forums.
Ron
Best of luck to you Pat.
I will miss your clear potent prose.
Nobody captures the experience of MM better than you.
John
Thanks for your great writing.
I add my thank to your inspirational, practical yet intuitive columns. Your last 7 pointers for newly Dx MM patients are very useful and verdant. May you continue to thrive in all ways. Namasté, Jan
Your column has been an inspiration and your holistic acumen, a trailhead for healing. Thank you for sharing your experiences!
Thank you so much Pat for your clear and helpful column. I've related to many of your approaches to handling myeloma, and total understand your decision to step down and live a normal life. May you enjoy many more years in remission.
Pat: I will miss your beautiful columns filled with wise words, spirit and energy, and wonderful advice. Thank you for connecting with us. I wish you a happy, healthy, and joyful adventure ahead! Sean
Hi Pat.. Being only new to the group with my mother, Pat, being diagnosed at 84, I hadn't had the pleasure of reading your input to the newsletter before. Jan sent an email out with this one in it. I would like to chat about “The body with cancer is a like a house that has been burglarized — you still have to live in it after the invasion, but you never really trust that everything is okay and safe.”, as it resonates with how I see Alzheimer's in a huge way. Alzheimer's Coaching is the certification I am in the middle of attaining, and I would love to use this as a quote to relate it to what is felt by those living with Alzheimer's.
I can be contacted at my email address in this registration.
I'll be printing this off for mum to read.
Best regards.
Peter G
Thank you Pat, I have been encouraged and uplifted by your column, full of wisdom and human-ness.
Your writing has been beautiful and I have enjoyed reading your columns. Enjoy the next phase of the journey!
Pat, i have often read and loved your columns. Just about evey time i've thought I must see if I could go back and read the ones I've missed. Today when I saw this was your last one (sniff
) I decided now's the time and clicked on the "view a list of her columns here" button. But it said the website didn't exist. So I hope there is a way to access and read them.. ?
Anyway, thank you so much for your writing Pat. You are an inspiration and I, too, hope we hear from you again. Be well. Be cured.
Hi Vicki,
Sorry about that error. We've fixed the link. Thanks for the heads up.
The sure-fire way to see all the articles written by a particular Myeloma Beacon columnist or writer is to click on the author's name below the title of an article written by that person. That will always take you to the list of all articles written by the author.
Pat -- Ciao. i remember you saying a doctor once told you, "perhaps your myeloma will never come back." Luck, as you say, and i can't help feel a bit of envy that you are off scot-free to enjoy anything you want, now that you have gained a perspective that allows you that. Your lovely columns can certainly be put into a book. i have them saved clipped and folded inside that wonderful book "Cancer: A Biography."
Best always to you. Suzanne
Thanks for all you've shared here. I have learned from you, and am grateful for the efforts you've put into this community.
You will be missed, Pat.
Pat,
Thank you so much for all you have contributed to all of us. Reading your column has been something I have looked forward to for the past few years. I have read a lot and contributed a little about my own personal situation. I wish I could have given the emotional support that you have given to so many of us. I will miss you very much.
God bless you !
JP
My dear Pat,
Everyday I wear a ring inscribed with “There is a crack in everything. That’s how the light gets in.” It is a reminder for everyone in all circumstance. I will miss your writing as it is an extraordinary healer and written so visually. I send my love to you always.
Toby
Hi Pat,
All the best for the future, may your remission be long and without any hiccups. I have enjoyed reading your columns.
Libby
Hooray, Pat! Many thanks for sharing your journey with us. I wish you many long years of remission to come.
Chuck
Dear Pat - I only recently ran across the Beacon, so your last column was actually the first of yours that I read. My first reaction was, I want to know this woman! I went back and read the other 26 columns and found they all resonated with me in the same way that the 27th did. I am inspired in so many ways and have received the gift of peace of mind simply from reading your wisdom. A million thanks for sharing your experiences, your wisdom, your vulnerability...and so much more.
Namaste,
Kathy from Maryland