Monday, October 20, 2008

I hope I helped

A year or so ago, the International Myeloma Foundation asked me to be a "Patient-to-Patient" volunteer. This is a free service where the foundation matches up a newly diagnosed patient with one of us old-timers. (Yeah, I'm an old-timer!) We talk on the phone, and the old-timer is supposed to give the newbie information and advice and support and all of that good stuff.

Anyway, I signed up for this, and then nobody ever called me, until today. I talked to a really nice 69-year-old man who was just diagnosed with smoldering MM and admitted -- understandably -- that he was scared and upset. After you get diagnosed with myeloma, you get all of these horrifying statistics thrown at you. The most common one is that you have three years to live. Why do they use these statistics anymore? Why? They suck. Anyway, I think after this man talked to me and realized that I've been around for almost three years and I'm not at death's door, or anywhere near death's door, he felt much, much better. I felt glad that I could help.


Anonymous said...

Hi Karen -- I'm looking for a supportive volunteer such as yourself. Young I see. I'm a healthy 60 boomer who just got diagnosed with myeloma on Oct. 8, & started therapy the next day with Velcade & Decadron (I've read encouraging things about this combo).
I have no other problems -- bone scan great, no M protein in urine, chromo picture great, except for the 13th with a mutant gene for myeloma found through the FISH test. I feel great, have been vegetarian/fruit, no red meat, water aerobics for 14 years, and no health problems. This is scary stupid stuff for me, and so new that my mind boggles with all the info & research I read. So I need to slow down, but I would like to chat with someone since most of my friends have gone through breast cancer. I don't know anyone with myeloma, the support person from the local group called me & sounded like a nut! She scared me.
Hope you are well. Thank you.
Suzanne Gay, Coral Springs, Fl

Anonymous said...

Hi Karen;

I'm glad you could put a dose of reality into that gentleman's diagnosis. Living with MM, as I do, is a process. Those who are farthest along with that process are the best source of info. The IMF was right to tap you as a resource.


Anonymous said...

Hi Karen,

I have been reading your blog for quite awhile now...I love it! You and WCK always make me smile:)
My dad was diagnosed with MM last year. I don't know why they use the "3 yr" statistic either, especially since we seem to be writing new rules with drugs like velcade and revlimid. All these numbers do is scare the living daylights out of you. My dad is currently on revlimid (and the dreaded dex). Just wanted to say thank you for sharing your experiences with MM (and with WCK-she sounds adorable!).

CB said...

What a cool thing. I know you helped. The world seems to stop with this diagnosis. Just knowing there are other people out there with MM continuing to live their lives is encouraging.

Karen's mom said...

In '96, I was suddenly diagnosed with class IV congestive heart failure at age 48 and they gave me 5 to 10 years, so I can appreciate the fear of the unknown that scary illnesses bring. The good news is that I'm fine now and it's all due to modern medicine. I have every faith that the work of Kathy Giusti and the MM Foundation will keep everybody going for a long, long time. It's even been said that MM will soon become treatable like any other chronic illness like diabetes. Do those of you newly diagnosed know that Geraldine Ferraro has it and maintains a very active life?

Best wishes to all of you!

Karen's mom

Kathy from NJ said...

Dear Karen,
I know someone who has been living with MM for more than 15 years. He's had his ups & downs and has had 2 or 3 stem cell transplants. He and his friends & family always make sure he has something to look forward to.

Karen's Sister said...

I'm sure you helped, you're "Cancer Girl," after all. This isn't the first time that people have posted to your blog to say they've found comfort in your humor. I think its neat that your blog can actually reach out to people and help them.

And strangely enough, I think you're okay with the church van thing. Statistically, if you were to be run down by a church van, that probably would have happened in our old neighborhood, where we had a church with copious vans just down the street. These days you're more likely to be trampled by gangs of screaming toddlers at a Mr.Stinky Feet concert.

Roobeedoo said...

Hi there! What a fantastic scheme! My husband received a 2-year MM prognosis a year ago and belived it. So even though he is doing well, he says stuff like "Well when I'm gone in a year from now..." I am sure it would help him if he could talk to people like you. Shame there doesn't seem to be the same scheme in the UK.

Kim said...

Hi Karen,

I thought you'd might like to join a webcast hosted my the International Myeloma Foundation. Here is the link where you can find more information Feel free to contact me as well if have any questions.

Weber Shandwick for the International Myeloma Foundation and Celgene