I'm not sure if you have literally ever had the opportunity (or should I say dare) to get a group of friends together and see who grabs the short straw. I've never literally done this (perhaps its because I never have straws in the house?) but I feel like I've once again come up short. The doctor literally looked at me and my friend Gloria that attended this week's batch of appointment with me and said those dumb words, "It looks like you've drawn the short straw again."
Let me just say it here and get it over with. Once you read and process (you might have to come back) - continue reading...
I have two brain tumors, one a dime in size, the other around a penny in size. Both are meningioma (treatable tumors) that are common to cause low CSF (some of you may remember my issues with this last August...these are the cause of it). The smaller tumor is located in my parietal lobe of the brain. Since my very first CT and MRI back in August, this tumor has simply just been there. The other "penny sized" tumor is located in my frontal lobe area (both on the left side of my brain...go figure) and has not only grown slightly (less than a cm) but has also changed its overall form. The doctor believes its reaction to the latest round of IVIG treatment with the added chemo infusion actually indirectly reacted with the tumor itself. This is a good sign when it comes to designing a treatment plan - but it is a bad sign because these types of tumors (though very rare) are malignant. At this point, the doctor refuses to do a biopsy because my CIDP has not been under remission and the risks outweigh the advantages. Through the multiple blood tests and deeper (level 2 MRI), combined with the shape and reaction of the tumors - the frontal lobe tumor is being called malignant and the parietal lobe tumor is benign (but can become malignant - but not a big threat at this point). BUT the reason (the doctors believe) that my CIDP has not encountered a full remission is partially due to these two tumors (the other half fully being me...my reluctance to stop and listen to my body when it needs rest).
Things to grasp here:
- The tumors are small and have been caught early (thank God)
- Both tumors are the same type, yet differently classifications (that's just a fact...)
- People can simply live with these tumors if they can go into remission (especially given the size and location of the smaller tumor)
- My hair is already gone due to the previous chemo - one less emotional drawback to deal with!
- Doctor will meet with me again this coming Thursday at 2PM (no treatment is even set-up without pulling my cardio, neuro, PCP and oncologist together - their meeting is set for Tuesday as they Skype in the specialist (neurologist from Atlanta) who has dealt with CIDP previously with 2 other patients...one a LOT like my case). The oncologist with present the plan to me on Thursday.
- I see the other specialist in Tampa on Feb. 1st - at this point, the department has agreed until the next week (Feb 6th) to even begin any type of treatment (which is good - I wanted a second opinion).
- I feel confident with the information I was given yesterday. Not only does it make sense to me, it follows the way I've been feeling too...I appreciate the bluntness of doctors, not the lack of empathy...but at least mine give it to me straight.
Mentally I feel like I'm on track...somehow. I understand and can explain what is going on. I'm still getting the hang of the terminology. My emotions haven't even remotely caught-up....and they won't most likely for a bit.
I am, however, frustrated. Like I mentioned, the short straw is no fun. It means others out there have a perfectly good straw and are enjoying life with no "extra" bending to do on their part. Here I am, trying to figure out really how to even do life and I draw the short straw...again.
Okay God...I've had enough now. Really...I've been through enough to last me the rest of my life...shoot, I can even write a book and get published...and create a SERIES!
Funny thing though - when I got in my car last night just guess what song came on the radio? No kidding here folks... it was Josh Wilson's "Fall Apart" (if you are a new reader...refer to my previous post "Fall Apart"). My mind instantly went back to the way I felt then...and now too...my life really is insane, falling apart and God is right there in the middle of it. I do see Him now better than I did before all of this. So, I guess that means there will be closer, more amazing God Moments to come.
And you thought my blog was getting Boring again...its almost like God was giving me more writing material. (Yes...I can crack a smile today).
I haven't really dealt with any of this yet...but I'm sure you will hear it soon. Please continue (as I know you will) to support my family in your prayers.
I'm thinking about taking a weekend away just for Steve and myself...as in next weekend...hmmmmmm....