Ports, MARF, Survivors, and Relay for Life

Yesterday I had surgery to have my port put in.  The doctor was right; it was extremely quick and easy, but boy does it hurt.  I mean it.  I have an extremely high pain tolerance – extremely high.  But let me tell you; I am popping two pain pills every four hours right now, on top of my pain patch.  This sucker is no joke.  The surgery was definitely the weirdest one I have ever had.  They put me in what’s called a “twilight sleep” where I was supposedly knocked completely out, but I could still hear everything.  And boy could I.  Towards the end of the surgery I just started talking back to them.  I guess I was waking up at that point? I dunno; it was strange.  But the port is in.  I can’t take the bandages off for 72 hours, so I have no idea what the scar will look like.  I just hope it stops hurting so bad soon.  Two pain pills at a time make me crazy-loopy.  (Also, if this post winds up making zero sense, that is why.)

Now, my doctor in Houston who specializes in meso, Dr. T., put me on the right path to “meet” (virtually) other survivors and caregivers across the U.S.  She showed me the website for the Mesothelioma Applied Research Foundation (MARF).  A couple of things about this site make it different from any of the lawyer-run asbestos sites.  First of all it is run by a nurse practitioner, Mary, who has more than twelve years experience working with mesothelioma patients and their families.  Every single person I have “met” just sings her praises.  She can put you in touch with the right doctor, the right specialty.  She’s on top of all the medical trials and because she is an NP, she can answer any questions about drugs or side effects or meso in general.  When I first joined, Mary contacted me personally and gave me her personal phone numbers so I can reach her any time with any questions.  Secondly, as you can probably tell from its name, MARF is all about the research – and, in turn, the advocacy.  They really want to get the word out there about meso so that researchers can find a cure.  

Now, for the few days after I joined, I poured over that website.  I learned everything I possibly could.  I attended my first support group.  I even tried out the message boards.  Here is where the problem started for me.  The message boards seem, for lack of a better term, stagnant.  Everyone sort of felt their hands were tied not wanting to post too much, for the lawyers peruse the boards as well. Also, because MARF is more about advocating and getting the word out, I wasn’t sure where my place was.  

Solution: MARF hired a Web Content and Social Media Manager, Tee.  And let me tell you, for me at least, things have exploded.  He has done so much and it seems like those affected by this disease (whether they be caregivers or survivors) are coming out of the woodwork.  I have joined a Facebook group for survivors and am blown away by some of the stories.  Some of the (years and years and years) of treatments scare me to death, but the point is: there are survivors out there who have beaten it.  After spending the last (indeterminate amount of time) thinking that it could not be beaten – that I would have it forever – this is a breath of fresh air for me.  There are at least two women (possibly three) who have very similar stories to mine – diagnosed in their twenties or thirties with peritoneal meso – now living healthy lives.  I have found no one with sarcomatoid yet, but just hearing these other stories gives me so much hope.  

In other news, I will be walking the Survivors Lap in Relay for Life tomorrow night.  (Ooh, I hope I am able to tamper down the pain pills by then; I would hate to walk looking like a drunk!)  I am really looking forward to it.  I’ll be honest, when I was first diagnosed with cancer, I told my husband I didn’t want to become one of those “vocal” people who did all those races or whatever.  And I was wrong.  Cancer does need money for research.  It doesn’t matter how many strides have been made over the years, cancer is still here.  It still affects millions of lives every day.  Meso especially needs those research dollars.  I hope others in the area will join me tomorrow night.  The survivor lap is early; I think around 6:30, but I plan to stay for as long as my son can handle it.  (He normally goes to bed around seven, so it may not be very long, but we’ll see.)

Thank you for taking the time to read my blog.  I am truly blown away that anyone wants to read what I have to say, and I hope that I do not bore you too much!  Prayer requests this week: most especially healing from the port surgery.  I am back to not being able to pick up my kid, not to mention the pain I am in.  I also have a couple of unspoken prayer requests for friends and family members.  And I have an appointment on Tuesday that may lead to an important decision.  Please pray for that.  And again, thank you.

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1 Comment

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One response to “Ports, MARF, Survivors, and Relay for Life

  1. Glad the surgery to put in the port was successful. Praying that the pain goes away soon!

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