My husband, 49, otherwise healthy, was diagnosed in June 2008 with Multiple Stage Myeloma after having gone into the Emergency Room in California in an ambulance because he couldn't get out of bed, due to severe, painful muscle spasms. I was in Maryland as we were in the middle of relocating and buying and selling our homes, resigning from my job, getting our kids situated in college, etc. What a whirlwind nightmare. We are now settled in our new home in Cali and dealing with this new illness and getting him well. He is currently has had a "complete hematology response" from the thalidomide/dex chemo and has little to no pain. We are working to taper him off the pain med. He is working.
We have a consultation in Little Rock, Arkansas at the Myeloma Institute for Research and Therapy (MIRT) later this month. We will decide to treat there after our consultation. He has the "easiest form" of myeloma to treat we are told, but will learn more after our trip to MIRT. We are hoping to convince them to allow us to come back to Cali and continue with his outpatient care here instead of spending 2 mos in Little Rock. Logistics will be hairy, but at least right now I'm unemployed and our children are at University.
We are tackling this in a 3 fold manner: mental/spiritual, nutrition, medical intervention. It is overwhelming as those of you who either have cancer or are caring for a loved one who does clearly understands. I set up a caring bridge website for him when it happened. Feel free to have a read. Just remember that in the MY STORY part I put he would have a complete and full recovery. Only recently did we learn it is not that simple with Myeloma - another whammy. I haven't put all that is going on at the site because his work reads it and his family and we have chosen to hold back some of the Life Expectancy issues we have learned about on purpose. We have to get our heads around it first.
We are carrying on, one foot in front of the other, not looking back, but only forward and gaining the courage to face the future as best we can and to not worry about what has not yet happened.
www.caringbridge.org/visit/davidpuente
FormerMember
We're wishing you every success with your visit to MRIT and hoping that the best treatment will be available: we in the UK reliant on the NHS have the feeling that there is better treatment available in the USA (if you can pay for it) with more drugs licensed. We are currently experiencing serious problems with trialed drugs being withdrawn on the grounds of "cost-effectiveness", and the official opinion that six months extra life isn't value for money as far as the government is concerned!
I think your three-pronged attack is an excellent road to go down. Although I was terminal from the start (however mis-diagnosed for first four months as Stage 2!) I too have been very careful with nutrition, and have cut out all alcohol. We weren't ones for processed food anyway, as it's poor value for money, and I love cooking. I also find exercise, particularly walking and swimming, extremely physically beneficial. - use it or lose with muscle tone - and also spiritually uplifting. I am lucky enough to get occasional aromatherapy sessions at the charitable hospice near here and find them really food for the body, very energising. It also affects the mind, improving mood.
I have found that despite the cancer, we can still enjoy ourselves - endorphins get released when we laugh and are happy, and no-one is going to convince me that happiness isn't the good guy and stress the baddie where "positive thinking" is concerned.
Just wanting to wish you all the very best. We too had a load of trouble with who knew the truth and who couldn't be told.
Hi to all of you - I read your Blog and was really touched by Dave's story, and the fighting spirit you seem to be infused with - good for you! Cancer, no matter what type is a coward of a disease and I truly hate what it can do, not only to sufferers but also to those who love and care for us. I know very little about the cancer your dear husband is suffering from, but I never think that little fact should ever stop any of us from holding out a wee hand in comfort and friendship. I hope you, Dave and all members of your family beat this disease, and get to reclaim your lives once more. With lots of love, hugs 'n xxxxxxxxxxx's kate
Thanks you guys! Cancer is definitely a "game changer" the common catch phrase in this year's presidential election in the US.
Yes, we seem to have good health care here, and yes, if you can afford it! Even with health care coverage it is still expensive with co-pays and then if we go to MIRT we may have to stay there as outpatients for 2 months and that will be costly as we will have to pay. With two kids in college and him being the breadwinner, financially it is very scary - even with the health care. I can't imagine the difficulty for people without it.
We plan for untimely death as families with life insurance and such things, but rarely do we think of disability in our young lives. We think of planning for it in our older years. But we will survive, somehow, the best we can.
Thanks for your support and hope to catch you again.
