What I Know Now

Not a whole lot.  

But I wanted to post anyway, before I go on vacation and have no access to a computer unless the Gulf Shores library allows me access.  

I received a call this morning from Mary L., Dr. T.’s nurse practitioner.  (I know, I know you need a chart to keep up with all these doctors and nurses.  Okay, I’ll do it real quick:)

  • Dr. T. – mesothelioma doctor at MD Anderson Cancer Clinic in Houston.  She was overseeing my case, but will now be passing that along to the Sarcoma Clinic.
  • Mary L. – Dr. T.’s nurse practitioner.  She is currently in charge of me, until all of my information is passed along to the Sarcoma Clinic at MDACC.
  • Mary H. – nurse practitioner who runs MARF.  She is my “friend” on Facebook and has been a huge help answering questions and steering me in the right direction with both of my diagnoses.  
  • Dr. S. – surgical OBGYN oncologist at a teaching hospital about an hour and a half ago.  He did my surgery and really has stepped out of my case, except for a professional interest.  Neither sarcoma nor mesothelioma are in his wheelhouse, but he continues to be kept abreast.
  • Dr. F. – local oncologist.  She is prepared to give me my treatments, as soon as the doctors in Houston work out what they will be
  • Dr. ? – sarcoma doctor at MDACC.  Still waiting to hear who this will be.

So back to Mary L.  She called me today to let me know that she has been working on my case, both trying to get me an appointment at the sarcoma clinic and an Angel Flight.  She told me today that it normally takes 5-6 weeks to get an appointment at the Sarcoma Clinic, but they have made me a priority and are trying to get me in sooner.  They told her that there is one particular doctor they want to me to see, and they are just waiting for him to tell them a couple of dates he has open. So there’s that.

Now, at the same time, Dr. F. is trying her best to get in touch with the sarcoma doc as well.  She is ready to begin my treatment and thinks that she should be able to just consult with this doctor over the phone, e-mail, etc., so that I don’t have to go out to Houston again.  

I am torn.  I see Dr. F.’s point that we should go ahead and get started.  My surgery was three months ago.  It would also be nice not to incur more travel expenses.  However, it may be necessary for me to return to Houston.  Sarcoma is a rare cancer (about 1% of adult cancers), but even more than that, there are more than a hundred sub-varieties of sarcoma, which makes each one even more rare.  My sub-type, myxiod, is apparently one of the rarer ones.  I think.  I can’t find anything about it here.  If I go out to Houston, they have libraries all over the hospital where I can research and learn about it.  And MDACC has the largest sarcoma unit in the U.S.

I guess my hope is to stay home and start treatment, but I am prepared to travel if I need to.  On the plus side, Dr. T. confirmed that this is a much better diagnosis than I originally received.   Stay tuned, I guess…

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2 Comments

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2 responses to “What I Know Now

  1. Andrea

    Yay blog post. I’m now up-to-date and not wondering while you are on vacation. Enjoy your vacation and I’ll check back on your Blog.

  2. Jackie Sport

    Praying that all details will soon be worked out. Enjoy your time at the beach. Know that so many people are continuously praying for y’all! Love you!

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