Saturday, August 1, 2009

Too many fallen soldiers in the MM war

This past week, I learned of two members of the myeloma listserv who have passed away, as well as an allo patient whose blog I have followed for some time. I have had personal conversations via e-mail or blog with all of them and I am pretty darn
bummed out. These folks were good people. One was a 59 year old woman from Texas. I just
read things written by a few gals who saw or spoke to her shortly before she died. Unbelievably sad. Another was a cardiologist from NY whose dad died of MM some time ago. His dad
was also a doctor as is his son, daughter, son-in-law and his wife was also in the medical field.
All that medical experience kept him alive longer than he would have been without it, I'm sure.
This was a great man who gave me some very good advice when Tim's transplant failed and taking his advice is, I believe, a major reason why we made a treatment decision that was the right one for us. The third is Andre, who had an allo transplant from an un-related donor and succumbed, after a helluva fight, to complications. He was a brave, funny, feisty, larger-than-life kinda guy. It is somewhat of a comfort to see how long people have lived with MM now when I read the "honor roll" that the listserv participates in
but it always weighs heavy on my heart to hear of these losses. There is no way to know when or
if we will be in that position and words just don't seem enough when you want to do something to help these folks. I just hope that this longevity is going to be enough to save folks who have MM now as progress is made with treatments. There is definitely a bonding you have with those who walk in
your mocassins. Tomorrow, we are driving out to PA to visit a couple we have remained friends with since Tim and Jim transplanted together in 9/07. We have stayed in touch with 3 of the patients that went through it with Tim. I care deeply for these folks. We support each other.
The old cliche is true that you just can't understand what someone is truly dealing with unless
you have been or are there now. There is a trust I have with these people that would take years to develop were you all not in this same pressure cooker together. I have met so many people on the internet since Tim's diagnosis
and the caring that comes across these computer screens is real and heartfelt. Perfect strangers
who cry, grieve, but also laugh and rejoice with folks from all over the world. It's powerful and it
is a lifeline for patients and caregivers as we struggle to deal with life's uncertainties brought on by MM. I know that with every patient who has gone from us, a doctor somewhere has learned a little bit more about MM and hopefully this moves us toward a cure. God bless all of us MM patients and families and I pray that these docs who say they think we will have a cure within
the next 10 years, are right. Sooner would be even better.

3 comments:

Barbara said...

What a beautiful post of reflection. I know of two people whom you speak about in your blog, and you are right on in your portrayl. But you know, you have also assured me things would be better when my husband was going through his SCT last December, so in a way you are paying it forward with comfort and kindnes. We will find a cure for MM, that is one reason why I am so driven to raise funds for the MMRF..things are cooking up.. and we are getting closer.. thanks for the good thoughts today :)

Susie Hemingway said...

A superb 'posting' I know the two gentlemen mentioned and have been deeply saddened this week to know of their passing. Both were kind and generous with comments and advice. I could not agree more about the sincerity of this wonderful group of MM supporters on the world-wide web. I have gain many new friends all travelling the same road...we are all in this together and in whatever way we can help and promote this little known 1% of all cancers, we must do it. Your post covered this so well, thank you it was a very worthwhile read. All sincere wishes to you.

La Cootina said...

I, too, am so grateful for this invisible network of support. I never would have imagined that the internet would be not just a diversion, an entertainment, but such a useful, important tool. I am sorry to hear of your loss; my thoughts are with you.