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.
