Myeloma Mondays #44: Carole from Marysville, WA (Age 64)
**To add your story 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! -Phil
Where were you born and raised?
I was born in Everett, WA and raised in nearby Marysville, WA
Where do you currently live?
When were you diagnosed and how old were you?
I was diagnosed January of 2010 at age 64.
Did you know what MM was prior to diagnosis?
Is there anyone else your in family with MM?
My mother's oldest sister died of MM in 1959. Her son who is now in his 80s was recently diagnosed with MM and I have another cousin on my father's side of the family who is also in his 80s and he was diagnosed with MM about a year ago. I grew up thinking MM was the worst disease you could ever have. My mother didn't know that I had MM for the first year and a half. I just couldn't tell her I had the same thing that her sister had.
What led to your diagnosis?
I had none of the usual symptoms. I actually thought I had pneumonia because I was having trouble breathing. When I finally went to the doctor, she ordered an X-ray and they found a pleural effusion. That sent me straight to the hospital where they drained 2 liters of fluid. This led to a CT Scan and the discovery of a tumor across my lungs in the pleura. The doctors initially thought it was mesothelioma even though I had no known exposure to asbestos. After a biopsy, they confirmed that it was mesothelioma. However, in recovery, I began bleeding profusely which led to emergency surgery that included a nearly foot long incision. While I was still in the hospital, they determined that the tumor was a plasmacytoma and I had multiple myeloma.
How many times were you referred before actually being diagnosed?
Where have you received treatment?
Providence Regional Cancer Partnership in Everett and Seattle Cancer Care Alliance
4/2011 - 10/2011: Velcade maintenance - Cycle: 4 weeks on 1 week off
Why did you or your doctor choose a specific treatment?
I have high risk MM and really didn't have a choice.
What has been the side effects of the different treatments?
Neuropathy, mucusitis after transplant, hair loss. I haven't had nausea and vomiting so I think I am lucky.
What has been the hardest thing about your MM journey?
Mucusitis was by far the hardest part of my MM journey. I was hospitalized for 17 days because I couldn't eat or swallow pills and I was in so much pain. Also, the uncertainty I have knowing that MM is incurable and will come back. It is like living with a sleeping giant.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
I discovered strength I never knew I had and that has been a gift. Early on I was unable to research and read about MM. My local oncologist who is marvelous sent me to "the big boys", as he called the Fred Hutchinson doctors at Seattle Cancer Care Alliance. I felt comfortable putting my faith in their expertise. Fred Hutch. received the Nobel Prize for pioneering bone marrow transplants andthey are also the largest transplant clinic in the world, so I knew I was in good hands. After transplant and recovery, I have since done a lot of research and reading online. Lesson: If you have first rate doctors, it is OK to rely on their expertise until you are ready to face what you might find when researching MM yourself.
How have you been able to stay positive and encouraged in your MM journey?
I stay positive most of the time and I am not sure how I do it. It just seems to happen. However, I do have my down times. In fact, I am just coming out of the "doldrums" and wrote about it on my most recent blogpost today.
After being diagnosed... What perspective was changed the most?
I don't worry nearly as much about little things. I just think in the scheme of my life now they just aren't very important. I am trying to "inhabit my days" more.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
What MM sites or blogs had you found good information from after diagnosis?
I read several blogs of other MM patients. I like the Patient Power, Fred Hutchinson Cancer Research Center and International Myeloma Foundation websites. I also have a blog at http://caroleleighi.blogspot.com
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**To add your story to MM Mondays Story Time 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! -Phil