Search This Blog

Wednesday, October 10, 2012

What's Next?

It's been over a week since I've updated this blog.  One reason is that I spent the last long "guys" weekend up at the family farm in Champlain, New York, on the Canadian border relaxing and playing golf with my son, Jeff, and good buddy, Bobby.  The fall foliage was on full display, and we barbecued steaks, chickens, and veggies on the grill. Afterwards, as night fell, we sat around the roaring fire pit looking at the stars, smoking cigars, sipping wine or beer, and just talking.  (Don't tell Dr. Richardson about the cigars.)  It doesn't get much better than that.  Sadly, we had to close the place up for the winter, so we won't be back until next spring.  Sigh.  These are the times that memories are made of.  When one's time may be limited, one collects and treasures whatever memories one can.

I have been struggling a little bit lately about how to proceed with this blog.  As of now, I seem to have reached a plateau in my response to therapy, and with any luck, I may stay in my current state of IR remission for some time.  If that is the case, I may not have much exciting new news to report on my progress or lack thereof in the near future. (I really hope it stays that way!)

I really enjoy writing this blog.  It is a cathartic outlet for me, and I enjoy telling the stories of my progress and that of others whom I encounter.  I also enjoy delving into the MM research and commenting on what I think are important discoveries or conflicts on how to approach treatment options.  I also know that when I start to get too technical, I turn some people off, so I try to insert some humorous asides to keep my readers from falling asleep.

I also treasure those other MM patients that I have met through this blog, and I am following their situations with hope and concern.  I want to learn from their experiences as well as share my journey with them.  I don't want to lose those connections.

Where to I go from here?  I would like to find a way to keep updating this blog at least once or twice a week, as I have been for many months now.  But my own MM story is getting a little stale at that pace.   I could make it a little bit more research oriented, but I don't want it to get too dry and boring.  Besides, there are other blogs (such as Pat Killingsworth's) and news feeds ( such as the Myeloma Beacon) that keep up with the latest and greatest news reports.  I could opine on what I think are the best options out there, but I'm not a doctor, so what gives me the right to have an opinion?  As a patient, however, I may have a valid opinion on some matters that doctors might not appreciate.

There are some issues that I would like to continue to pursue, such as the effects of long-term maintenance therapy with Revlimid, how to decide if and when to do a stem cell transplant, and how best to deal with high-risk cytogenics, such as my t(4;14) translocation, among others.  One of my strengths is that I have a technical bent, and I think I know how to wade through a lot of the bullshit gobbledegook out there to cull some of the more relevant facts.  However, I don't see how to continue posting on these subjects at the same rate that I have been up until now.

I solicit inputs from you, my readers.  What would you like me to continue writing about?  If you want me to just shut up, let me know that too.  I would like to keep this blog to be informative, helpful, and entertaining.  The last thing I would want is for this to be like a Facebook page (to which I do not belong) describing the minutia of my incredibly boring life.

You may respond online to this blog or email me directly with your suggestion.  In the meantime, I will continue to plod along this same path, hopefully with something interesting or informative to share.

 




9 comments:

  1. Hi! I recently came across your blog on the myeloma beacon and I have enjoyed reading your posts. I was diagnosed with MGUS in 2009 at age 25. I am also a patient of Dr. Richardson at DFCI. I just started a blog which has been a positive endeavor so far. I can relate to some of what you have written – in particular the frustration around Patient Gateway not listing pathology reports and the long wait for appointments. I should have known when I made my first appointment with Dr. R. and the secretary said to definitely bring a book! :) He is such a great doctor, though, I can’t complain. Anyway, I wish you the best in your treatments and I hope you keep writing! -Elizabeth

    ReplyDelete
    Replies
    1. Elizabeth, I know that treatment options have been rapidly changing for dealing with the pre-MM conditions of MGUS and Smoldering Myeloma. Until recently, a wait and see approach was the standard of care. I know Dr. Richardson tends to favor aggressive treatment, so I know you are in good hands. I agree that waiting for Dr. R. is worth it, once he gets around to seeing you. You just have to plan your day around the DFCI visit and accept it serenely. Please let me know how to access your blog. I will be interested in following your progress. Bill

      Delete
    2. My blog is mashingmyeloma.blogspot.org - it is a bit less informational than some as I am still learning a lot about myeloma! I was diagnosed as very "low risk" MGUS in 2009 but a biopsy this summer suggested borderline SMM. I will have a repeat biopsy and some additional testing in December which will determine next steps. -Elizabeth

      Delete
    3. Elizabeth, I checked out your blog (mashingmyeloma.blogspot.com) and it's great! I sympathize with your angst about watchful waiting on the MGUS while pondering major life decisions. I know you didn't ask my opinion, but my feeling is that you should live your life to the fullest and not hold back on important choices based on the possibility of the MGUS progressing to MM. First of all, that could take many years, and second, with all the recent advances in treatment therapies, by the time that happened, MM may have become a chronic manageable disease or even be curable! I say go for it!

      Delete
    4. This comment has been removed by the author.

      Delete
    5. Thanks for the encouragement, Bill! I do appreciate your opinion! :)

      Delete
  2. Hi,
    I have enjoyed reading your Blog. It is great to get a different perspective on the disease.
    I go to the UAMS in Ark. I enjoy your comments about sailing and enjoying life and I like to compare treatment/test results from different therapies. Keep up the writing!
    Thx
    Keith

    ReplyDelete
    Replies
    1. Keith: I am very interested in the UAMS approach, as it differs greatly from what I have been exposed to. I know it seems to be very successful with those with low-risk MM, but not so much with high-risk MM, such as I have. I would be interested in your perspective on this.

      Delete
  3. This comment has been removed by the author.

    ReplyDelete