Myeloma Monday #43: Emily From Austin, Texas (Age 39)

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Where were you born and raised?

• Washington, DC. Moved to California at 15 years old and Texas at age 27.

Where do you currently live?

• The heart of Texas: Austin

When were you diagnosed and how old were you?

• Feb 2010, 39 years old

Did you know what MM was prior to diagnosis?

• Nope

Is there anyone else your in family with MM?

• No. Father had CML (leukemia) and passed away at age 52.

What led to your diagnosis?

• Stress?! I landed in the hospital with pneumonia and plummeting vital signs. The nurse told (very slowly) that an "On-Call-ogist" was coming to see me. A doctor On-Call? No, I want the full time doc, thanks! 
• Two weeks later, I did follow up with same oncologist who realized that the electrophoresis ordered in hospital wasn't done. "So, let's just do that test before you leave today". I seemed to be determined to be diagnosed, despite no other symptoms and having elevated protein blood work for 6 years before that.

How many times were you referred before actually being diagnosed?

• None (see above) 
• But, I did have 3 spontaneous eardrum ruptures and a couple of unexplained nausea episodes that preceded my MM diagnosis.

Where have you received treatment?

• Austin, TX: local oncologist; Northwestern University: Dr. Singhal; Methodist Hospital in San Antonio: Dr. LeMaistre

Explain your treatment history:

• 2/2010: Diagnosed with MM, Confirmed at Northwestern 3/2010
• 5/2011: No treatment needed for first 15 months (M protein hung out at 2.0 level), then 35% plasma cells on BMB and opted to treat with RVD for 3 months (7/11-10/11)
• 11/2011: Autologous Transplant in San Antonio, TX
• 3/2012: Maintenance Revlimid

Why did you or your doctor choose a specific treatment?

• Transplant was chosen to "kick" the disease down and since the research has shown that patients with transplants are living longer than those without.

What has been the side effects of the different treatments?

• Fatigue, weight gain (steroids), chemo-induced menopause (fun at 41!) and 4 months post-transplant still having ongoing digestive problems

What has been the hardest thing about your MM journey?

• Good question. I think I've fared pretty well with physical symptoms but it's the mental change that is most challenging. I can't seem to return to the person I was. My ambition and purpose are altered and I'm waiting for a new passion to replace them. The hardest part is thinking about the impact on my husband and children. 

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Don't believe the hype! Google is not necessarily your friend. It's okay to take a lot of time to get used to the idea and recover. This is generally a slow moving disease, so don't panic. Also, MM may shorten your life but it is not a life sentence. Statistics may get you down but all you need is a success of "one" for your life to continue. Boogie Barb (a 20 year survivor) said that MM wasn't the worse thing that she's had to deal with in her life...hard to believe when you're first diagnosed.

How have you been able to stay positive and encouraged in your MM journey?

• Two awesome mentors (through Imerman Angels in Chicago and Cancer Connection in Austin, TX: they match you with someone the same age and diagnosis). Lots of prayer, meditation, yoga, painting (things I didn't take the time to do before). Also, when people first found out about my cancer, they sent so many emails, cards, books, etc. I made a I CAN (cer) DO IT book of all these positive thoughts and advice. Now, I flip through it when I am losing my motivation and to see how far I've come.

After being diagnosed... What perspective was changed the most?

• Since I am a tall female (5'10"), I've always said, "Life is short...and I am not." Who knew how true that would be? I realized in the first year that I wasn't afraid of dying but I wasn't exactly living as fully as I could. I was holding back in my relationships so that people could survive without me. Now, I'm taking more risks and learning more skills to see myself as a more creative and peaceful person. My definition of success has changed. Even though I am a successful doctor with financial security, it means little compared to my health and happiness.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• Maybe? Father and I were Georgetown dental school "guinea pigs" in the 1970s.

What MM sites or blogs had you found good information from after diagnosis?

• This one! CancerKicker.org; IMF; Myeloma beacon listserv (ToSubscribe to this list- To:  Listserv@listserv.acor.org).