Friday, April 5, 2013

UGH...

It's been awhile huh?
Sorry about that.  I am watching my niece and nephew during the day (my new job) and I play all day I forget to update my blog! ha ha
Literally this has taken me two days to blog and post! So ENJOY! Ha ha
 
Where do I start...
I had an appointment with a Naturopathic Specialist on Monday (4.1.13) Dr. Daniel Rubin. He is nothing short of FANTASTIC! I am so thankful Marsha (Scott's Mom) recommended him to me.  I spent about an hour an a half in his office on Monday and we just went over all my medical history for the past several months.  He was excited I came in to see him as he is very interested in anything dealing with the neuroendocrine system and does a lot of studies and research.   Since my cancer is neuroendocine cervical cancer he was excited to get to treat me.  He had so much to say it was hard to get it all in at that one visit.  Somehow we managed.
He started off with a very valid point.  Since Dr. Bibb (which is a friend of his) is doing labs after my steroids really that's the only plan as of right now.  They don't have anything else "in the works" as far as treating me.  Until my platelets are up to normal I am just a "sitting duck".  So why not see Dr. Rubin?  Why not have him do all that he can, while my medical oncologist is doing nothing?  I agree with him.  What harm is it?  So we started off with blood work, and LOTS of it!!!!!  I had about 13 tubes of blood drawn by the time it was all said and done.  He is checking all my vitamin levels for starters.  He wanted to start me on Vitamin C infusions right away, and my first infusion was 04.03.13.  It went as to be expected. I didn't notice any difference other than lots of energy shortly after the infusion.  Which is normal.  I will get these twice a week for starters at 25 grams each, and work my way up to 75 grams.  ON top of this he has me taking 3000 mg of oral vitamin c.  Yesterday when I was in the office getting my infusion he came in to tell me some of my labs were back and I am deficient in vitamin D.  Mine is at 19, and normal is 40 or higher.  He added Vitamin D drops to my daily regimen.  I take 5 drops every day under the tongue and it will bring my vitamin D back to normal ranges.  I will be on this until further notice.  He hadn't gotten my other labs back yet, so I will get those when I have my second infusion on Monday. 
I got a call from Dr. Zaky today (04.05.13) and we have a plan going forward.  FINALLY...we have a plan.  So since we still don't know what is going on with the lungs yet but I do have an active tumor in my pelvis that needs treatment and ASAP.  So I see her on Monday for my SIMS mapping to get me ready for Radiation.  I am still undecided if radiation is the way to go at this time, but I will let her do her thing and decide when the time comes on Monday.  She did say I will get a least 15 more rounds of radiation (which is 15 business days) at 30 minutes each.  They will target the tumor specifically.  However I will not be able to do the Brachytherapy that was recommended last time, due to the fact that my tumor is too big.  It will be normal radiation like I had before.  I have become very hesitant to trust my doctors as they have given me some misguided information.  So I am still not sure I want radiation.  I will continue to pray about it. 
The BEST news is I got my blood work results Tuesday and my platelets are up to somewhat normal ranges! They were 80,000 on Tuesday.  Again normal is 140 or higher.  Which means the steroids Dr. Bibb put me on are working.  I got more labs drawn today to make sure they are going up and staying up.  So I should have those this afternoon or Monday.  While I was at the Oncology office today I get called back for my labs.  The lady draws my labs and tells me I have an appointment directly following.  I ask her for what since I wasn't aware I had any appointments.  She couldn't tell me, or didn't know.  So she takes me to another waiting room and tells me someone will be right with me.  After a few minutes of waiting a girl comes and asks if I am ready for my teaching.  UM...WHAT teaching?  She says for your Lovenox injections.  AGAIN WHAT LOVENOX INJECTIONS?  So as we are walking over to the room we are now standing in the infusion room with many patients around and many office staff.  The RN says "you have a blood clot" AGAIN WHAT?  How in the world did I get a blood clot?  I tell her my Platelets have been 34 or lower for the last 4 months, They just barley came up to 80 this week, my blood still isn't clotting on its own, why would I have a blood clot and why would I need lovenox????????  Needless to say I went off on them and stormed out.  I have a phone call into the Practice Manager.  So we will see what comes of this.  If I was any other patient, or didn't know what Lovenox was for and let them give me Lovenox I would have bled out and died!  So thank goodness for being on top of it!
 
 
Tanya

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