Thursday, March 22, 2012

Geez, what now??

I've mentioned my autoimmune disorder in previous posts, now that has suddenly become my health focus.  My inflammation levels are elevated (according to my blood tests).  We still don't know what is causing it, but now I have other highly unpleasant symptoms in addition to the fatigue and achiness... lets just say its unpleasant and related to my bathroom habits.  My rheumatologist referred me to a gastroentonologist, and based on my file, they scheduled me for a colonoscopy.... yippee.  Seriously.. I'm 30.  I don't think this is right, but they're wanting to rule out things like crohns disease.  

Even worse, the research I've been doing leads me to the conclusion that prolonged/chronic inflammation can be one of those cancer causing triggers.

So lets see, I'll make up a visual example of the scenario at hand... ok if you look at my hand like it would turn into cancer if I lost all my fingers (suddenly my hand would grow and morph into something deadly and uncontrolled trying to consume my body and kill me) and the fingers are the only thing keeping it in check...  So automatically I have ATLEAST a couple fingers gone because of the gene, next I have a finger knocked out due to environmental factors, and another finger or two due to past lifestyle choices (smoking, drinking, poor diet), then inflammation sets in and breaks off the last finger.  Now I'm not sure if the gene got rid some fingers to start with, or if it just made it easier for them all to fall off... either way out come is the same.

I'm trying not to be fearful.  It's hard when I feel so terribly and I don't understand why.  Just like when I had the lung issue last year, I find myself wondering if its possible that somehow I developed some aggressive ovarian cancer that has metastasized to my colon.  I imagine them calling me in after the colonoscopy and saying they found cancer, and they were surprised because I'm so young, but then they realize its not colon cancer, it's ovarian cancer!   I know I can't let myself get caught up in that kind of thinking.  Its just hard to not go there at all.

I feel like a freak.  I'm scared about this crazy stuff.  And then I have all these other issues.  I feel so bad for my family some days, particularly my husband.  What did he get himself into?  

Today when I was called by the nurse to get things in line for yet another procedure, she asks me about if i've had any surgeries... I list them all off, and theres part of me thats disgusted hearing it all.  then what medications I'm taking.. I list them off, and she asks why I'm taking them, and I have to explain, and I just sound so weak.  She asks about my family history of cancer, And its the C word.. and I just want to run away, but I have to stay on the phone, and I say well I tested positive for the BRCA gene mutation.... thats why I had the mastectomy.  "Oh," she says.. and I know she doesn't get it.  Not like I should expect her to.  So I tell her theres lots of cancer in my family.  and she says "ok, but do you have any first degree relatives, with um, the same.... um situation...?" well I got the gene from my dad, he's had skin cancer.  At this point I just want off the phone so bad... I'm so tired and sick of it all.  She asks if I have any mobility issues, and I don't know what the procedure entails, so I tell her I have temporary implants in and they're not comfortable for me to lay on my stomach... and they have magnetic ports.   "That shouldn't be a problem... but I'll make a note of it".


Now I have to wait 3 weeks for the colonoscopy.  Who would ever be eager to have a colonoscopy???? 

And NOT ME!!  It's just about the last thing in the world I want to do right now, but I can't stand the not knowing what is going on inside my body.

I'll get through this of course.  I'm just feeling pretty down right now.


  1. I am not sure I have any kind words to bring you from your low point but I am here and I am reading! I think this whole thing comes and goes in cycles and some days we are more prepared to deal with the stress than others. Its just an off day for you. now that you got it out, you might feel a little better. I am sure it is nothing but doubt I would react any different given our BRCA status. Keep us posted and I'll say a prayer for you.

  2. Thanks Erin. It did feel better to get it out. The whole thing with having to live with all this every day, and not letting it get you down.. Well - Occasionally it does (get me down). I think thats ok.

  3. It is something we have to live with everyday, unlike those who don't know or don't have the BRCA gene. No other way to put it except: it sucks! We are bound to have up days and down days. No one can be strong all of the time. I know you can see from my posts I've had my "down" days just like you.

  4. Hi Amanda, I experienced similar symptoms a couple of years ago, and after seeing numerous doctors and having soo many tests done and all coming back negative (but the blood tests were still indicating inflammation), my chiropractor suggested I try changing my diet. So I went lactose free and gluten free. And within DAYS I was 100% better! Worked so well for me, I thought I would share! :) Hoping all the best for you - I know how depressing and stressful it can get. Take care