Myeloma Mondays #31: Samantha from Auburn Township, Ohio

Below is Samantha, Age 38. This picture was taken at her Birthday party, just one week after her diagnosis!



Where were you born and raised?

• Chagrin Falls, Ohio
• Southern California in the summer-with my Dad( 1978-1988)
  

Where do you currently live?

• Auburn Township, Ohio

When were you diagnosed and how old were you?

• Diagnosed June 28, 2010- One week before my 38th birthday! (Stage 1- Non-symptomatic)
  

Did you know what MM was prior to diagnosis?

• Nope

Is there anyone else your in family with MM?

• I hope not!

What led to your diagnosis?

• I slipped on the top stair while carrying my 21/2 year old daughter. I held onto her instead of bracing myself. I fell hard onto my tailbone and sprained the muscles along the right side of my neck. I called an ambulance for fear I may have broken something. Ironically- at the end of the day- LONG day! The ER Doctor came back with my CAT scan results and told me I had nothing more than a bad sprain but they had what they call 'inccidental' findings. Tiny little holes that looked like capers through the vertabra in my neck. I had an appointment with an oncologist and an MRI the next day. By the end of the week I had my results. Bone marrow biopsy showed 10% plasma cells. The lesions were all through my ribs/spine/neck and the 10% gave me my diagnosis. The fact that I didn't fracture anything is a good sign that my bone damage is still minimal.

How many times were you referred before actually being diagnosed?

• Just once

Where have you received treatment?

• University Hospitals- Ireland Cancer Center-Dr. Judah Freidman
• Second opinion Doctor- Kenneth Anderson- Dana Farbor
• Both Doctors recomended RVD followed by Autologous BMT

Explain your treatment history:

• 07/26/10: Started RVD
• I just completed 2nd round of RVD
• After the first round my protein level dropped 60%( they say this is great!)
• I have no chromisome abnormalities
• ASCT planned for 11/10
• I just met my transplant Doctors last week and see them again on 10/06/10,
• They want me to only do 4 rounds- I assume they think it will be effective but they stressed that Revlimid prohibits stemcell collection.

Why did you or your doctor choose a specific treatment?

• I never considered NOT having a transplant due to my age and good health. I have a 2 year old daughter, a 4 year old daughter and an almost 6 year old son. I must aim for longevity. I am a stay at home Mom so obviously this has thrown a monkey wrench into our life!

• The transplant Doctors mentioned they may decide to do tandem transplants- I have been thinking about having a third opinion in Arkansas to hear what they have to say, etc.
  

What has been the side effects of the different treatments?

• Dex turns me back into a grumpy, brooding 16 year old. I have a bit of psychological distress looking at the 350$$$ pill I take at night (our amazing luck that insurance paid it does not make it any easier to swallow!)

• The dex also keeps me up late at night.

• I haven't had any bad effects from the velcade or Revlimid-
• I started taking acyclovir and it has given me a terrible taste in my mouth-ruins the taste of food and drink.

What has been the hardest thing about your MM journey?

• The absolute torture of my possible mortality with my three small kids. They are too little to understand what's going on so we have just kept it from them. I must look to complete remission and just MOVE forward.

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

• Be positive-be real. Let out how you feel to someone. Find your support system and use them! It is an absolute mess in the begining, finding out the different ways everyone copes in these situations. It is so isolating to be diagnosed. Even the people closest to you can't imagine what it's like. Sometimes people say the dumbest things- just let it go!

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

• I have read so many encouraging stories. So many survivors! I swear the stats don't match all the survivor stories I've read. Everyone is more symptomatic than me but yet even more positive! It has been encouraging!

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

• I have often thought about what I was doing/planning/thinking/feeling before my fall and it's funny that although this has been the biggest and scariest trial, it has changed my life in some of the most positive ways. I have no choice but to cherish every moment with my kids and my husband. I have no idea how I will make it through being separated from them during the transplants-but if it means years to come with them- so be it.

• I have met the greatest people during this time. The nurses and doctors and staff. All awesome. I'd like to find a place for me in there somewhere when this is all said and done. God got my attention, that's for sure. No more complaining about the laundry!

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

• My dad was diagnosed with early onset of Parkinson's 2 1/2 years ago. He told me that his doctors mentioned Malathion that was sprayed over southern California to get rid of fruit flies in 81',82'83'84'. I remember it, in 1982, the fruit flies were so bad that summer. They sprayed overnight without telling the residents and everyone woke the next day to paint melted off their cars and the paint chipping off their houses. I have googled it and there are many class actions and trials connecting that pesticide with Parkinson's and MM.

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

• I have literaly combed hundreds! I LOVE the ones with hope and positivity. I have no reason to doubt my luck in seeing the Myeloma so early. Who knows how long it would have been, or how much damage would have been done if I hadn't been pushed down the stairs by GOD himself?

***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! -Phil