Myeloma Mondays #36: Joe from Kenilworth, IL

***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!

This week's post is written by Linda, Joe's wife and caregiver.

Where were you born and raised?

• Born in White Fish Bay, Wisconsin and raised since 4^th grade in Kenilworth, Illinois
  

Where do you currently live?

• Kenilworth, Illinois
  

When were you diagnosed and how old were you?

• Diagnosed 3/9/09 aged 47 IGA Lamda
  

Did you know what MM was prior to diagnosis?

• no
  

Is there anyone else your in family with MM?

• no
  

What led to your diagnosis?

• Had breastbone pain after a golf outing 8/08—Thought it was a pulled muscle then diagnosed by two doctors as costochondritis.

• Then in February and March had increasing pain in leg and hip and could barely walk. A new doctor ordered an MRI.
  

How many times were you referred before actually being diagnosed?

• Once
  

Where have you received treatment?

• Evanston Hospital in Evanston, Illinois and also see a myeloma specialist at Northwestern in Chicago, Illinios
  

Explain your treatment history:

• 3/11/09 Vetebroplasty and resection of tumor at L5
• 4/2/09 Started treatement of valcade and dex along with 20 radiation treatments a
  
• 6/09 Add Revlimid after radiation ceased ( Achieved Cr after one month)
• 8/09 Harvest 2xs Difficult harvest. Port infection and removal
• 9/24/09 Stem cell transplant after high dose melphalon
• 12/15/09 Maintenance Revlimid 10mg daily
• Note that he is on a great deal of pain medicine for the neuropathy that he had from the tumor early on.
  

Why did you or your doctor choose a specific treatment?

• We chose to do Joe’s treatment locally as it was best for our family situation.
  

What has been the side effects of the different treatments?

• Velcade and dexamethasone- tolerated quite well. Because of brain injury, sleep has never been an issue, so the dex did not interrupt his sleep.
• Revlimid- initially a facial rash that lasted about one month.
  
  What has been the hardest thing about your MM journey?
• Again, the brain hemorrhage and loss of short term memory have been the hardest things to deal with in my life. As far as the mm goes, just knowing that I have cancer and MAY have a shortened life expectancy.
  

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

• Do the research about the disease. Make sure that you are close to your love ones and have a network of support.
  

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

• We are very hopeful with all the advancements that have been made in mm in the past 7-10 years. We are grateful to achieve such good results with the treatment thus far.
  

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

• This is coming from his wife Linda: Joe has always had –even before all his health issues- the perspective that our life on earth is a means to get to heaven. All of this life, should be lived in respect to earning a place in heaven. This perspective has not changed, it has just intensified.
  

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

• no
  

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

• Nick’s
• MM for Dummies
• Tim’s Wife
• Myeloma Hope
• Hamada
• The Adventures of Cancer Girl
• Myeloma Warrior Killing the Beast
• Scoop on Dan
• Myeloma Youreloma
• Sanders
• Lorna And Micky Oureloma

I have been reading any mm blog that I can. They really do help.

***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!