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 Hampshire
When 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?
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 RVD
11/2010: Autologous Stem Cell Transplant
2/2011: 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?
What MM sites or blogs had you found good information from after diagnosis?