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Pat’s Cracked Cup: The Seasons Of Living With Multiple Myeloma
By: Pat Pendleton; Published: March 1, 2013 @ 12:14 pm | Comments Disabled
This is my 27th and last column to appear in The Myeloma Beacon.
I wrote my first column [1] 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 [2], doxorubicin [3] (Adriamycin), and dexamethasone [4] (Decadron) over a 3-month period of time. I also received infusions of the bone-strengthening drug Zometa [5] (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 [6].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2013/03/01/pats-cracked-cup-the-seasons-of-living-with-multiple-myeloma/
URLs in this post:
[1] first column: https://myelomabeacon.org/headline/2010/11/30/pats-cracked-cup-introducing-my-multiple-myeloma-column-and-my-experiment/
[2] vincristine: https://myelomabeacon.org/resources/2008/10/15/vincristine/
[3] doxorubicin: https://myelomabeacon.org/resources/2008/10/15/doxorubicin/
[4] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[5] Zometa: https://myelomabeacon.org/resources/2008/10/15/zometa/
[6] here: https://myelomabeacon.org/author/buffalopat/
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