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Wednesday, October 12, 2011

Dex Effect

OK, here it is, 5:00 am, and I've been awake since 2:00 after my dose of dexamethasone yesterday.  (I'll dispense with the Tarzan yell video this time.)  There's not a lot else to do around here at this hour, so I thought I'd add to my blog.

In my last post, I was complaining about the wait times at DFCI.  However, there is a silver lining to that.  The Dana Farber Blum Patient and Family Resource Center is an excellent place to relax and learn while waiting.  They have a lending library with books, brochures, videos, and CDs, along with several computer stations.  There is a private room which can be reserved for relaxing, meetings, or teleconferencing.  They even have a 1000 piece jigsaw puzzle that you can work on in your spare time.  They also sponsor numerous talks and seminars.  Next week, I will attend a writing workshop there entitled, "Writing Your Story:  From Blog to Memoir", led by Amy Boesky, a professor of literature and creative non fiction at Boston College.  I'm doing this for your sake, my loyal readers.  I hope to find out how to make make my blog more interesting and appealing.  We'll see.  You will all be the final judge of that.

 A great benefit of the computer access is that I can log onto, which is a medical online resource available to clinicians and patients, accessible without a subscription from the DFCI computers.  I am finding this to be a great help in doing research on MM.  Normally, when I Google a medical topic from my home computer, I get a shitload of useless information.  For example, if I make a query about a blood test, half of the articles that come up describe what to do to prepare for the test and what the test will feel like (as if I don't know), without any information about why the test is being given or what the results mean.  It's a real pain to weed through all that crap.  How refreshing it is to use UpToDate to get real clinical information!  This is how I was finally able to satisfy myself yesterday about the M Spike issue I reported on in my last post. (I may not have satisfied you, but I satisfied myself, so I'm going to let it go.)

I mentioned Pat Killingsworth's blog in a previous post (Sept. 25).  He wrote a book on his experience with MM, Living With Multiple Myeloma, which Gretchen ordered.  We both read it and found it quite informative.  The Blum Resource Center doesn't have much literature specific to MM, so I ordered another copy and donated the first one to to their library yesterday.  Hopefully, other MM patients at DFCI may find it to be helpful.

I visited Pat's blog today and I found out his bad news:
After 4 years of remission, Pat underwent an autologous stem cell transplant (ASCT) in July, and he just had his 3-month followup.  Unfortunately, his MM is back already and he has developed more bone lesions.  He now has to go back on consolidation therapy to try to beat it back down.  Bummer!

Over the next couple of months, I will be doing extensive research on my own options for ASCT.  At this point, I am quite leery about jumping into this option too quickly, considering all the associated risks, pain, suffering, expense, and uncertain prognosis, especially at my age.  So far, Dr. Richardson and I seem to be on the same page with this.  I intend to inform myself fully on this issue, so that I may have an intelligent dialogue with Dr. Richardson when the time is ripe.

Tomorrow, I see the dentist to start my major dental work.  When this is all done, people may think I'm from Appalachia with my two remaining teeth.  Actually, being from Western Pennsylvania, I kind of fit the bill, so that won't be so far off the mark.

Now it's almost 7:00 am.  It's starting to get light out, so I have a choice to either start one of my projects or try to go back to sleep.  I'm not sure which one yet, so I'll let you know in a future post. ;-)

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