Monday, January 10, 2011

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 4th 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!


Preferred Customer/ Janice said...

What caused the brain hemorrhage? Was it before or after the Mm was diagnosed. Was it related to treatment. You have a hard way to go but God bless you for keeping the faith. You might want to read my website (yes I have a blog also) but it may give you tips. Neuropathy is a nasty side effect and painful. using essential oil can often help relieve pain. Applying Frankincense and peppermint and Lavender oils can help sooth the nerves. If there is burning use any oil to clam it down. (No water)
Take heart I am a MM survivor.

Linda said...

Janice, . Joe had a brain hemorrhage during surgery to remove a benign tumor in 2006. He lost his short term memory and is now disabled and cannot work. He did not lose his intelligence but he can literally not remember yesterday. (I know, people always think of the movies---50 First Dates or Ground Hog Day.) He relies on his iphone calendar to keep notes on his days. (The kids and I help him a lot, too.) He volunteers two days a week and keeps busy with all of our family activities. We have a wonderful network of friends and family that support us a great deal. This ordeal was more life changing than the cancer in many ways as our whole family has had to adjust to a whole new “normal”. We have each other and our faith which has helped us survive.

Linda said...
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