Monday, January 24, 2011
Sunday, January 23, 2011
Monday, January 17, 2011
Friday, January 14, 2011
Monday, January 10, 2011
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?
Is there anyone else your in family with MM?
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?
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?
What MM sites or blogs had you found good information from after diagnosis?
- MM for Dummies
- Tim’s Wife
- Myeloma Hope
- The Adventures of Cancer Girl
- Myeloma Warrior Killing the Beast
- Scoop on Dan
- Myeloma Youreloma
- Lorna And Micky Oureloma
I have been reading any mm blog that I can. They really do help.
Tuesday, January 4, 2011
Why such an idiot? Don't you realize you have had roughly 15 months of treatment, two transplants and we're heading into cold and flu season? Cassie and I reviewed this question while I was in the hospital in order to have an action plan if my stubborn and ignorant personality comes out again while my body is crying for help. We've boiled down my naive and ignorant response as a result of years of intense physical training in sports; specifically as a Wolverine. It's not an acceptable excuse, but years of beating my body down to the point where it has zero say has definitely skewed my ability to answer the question, "How are you feeling?" We have noticed that as long as my pain or discomfort isn't extremely high, I tend to respond with I am doing fine.
Due to the recent bout with pneumonia and the flu, Cycle #6 has been derailed and I am drug free until we begin maintenance mid-January. I look forward to see how things go as we pull back the drugs and allow my bone marrow some rest from the beating.
I hope everyone had a Merry Christmas and wonderful New Year. Cheers and Domination in 2011. May it be a year of healing and great hope for us all!!!