HELLO one and ALL!!! :)
I know it's been awhile since I last posted...to that I am sorry, but not! ha ha
I have been living life and a busy one at that. It's been full of the usual doctor appointments and labs and Vitamin C infusions and Biopsies and the list goes on.
Today (05.17.13) I had my follow up with Dr. Bibb. I can't tell you how much I love this doctor. I could only wish he was a gyn/onc!!! He is my med/onc (blood doctor) and he is just fantastic. You know you have a good doctor when he walks into the room high fiving you (for your platelet count) and giving out free hugs! :) It never fails when I see him he gives me at least two hugs before he is off and hugging the next patient. I had labs drawn today at his office to see my WBC is 8.6! That's NORMAL!!! WHOOP WHOOP!!! My platelets are 177, that's ABOVE NORMAL!!!! Can you believe it? 177!!! It seems the IVIG and the steroids have WORKED!!! You read right, the IVIG and steroids are WORKING!!!
He has confirmed in fact I do have ITP. We were waiting on the BMBX biopsy before we could confirm it to be true. We have been decreasing my steroids for the past few weeks. He has lowered them again to 20mg. I will start that decrease tomorrow. I will more than likely be kept on steroids at 20mg for awhile, to see if my platelets will still hold strong at normal levels. I will need to do maintenance IVIG to keep at normal levels. This DOESN'T make me happy, but whatever. He has suggested I go forward with the lung biopsy. I didn't want to do this after seeing the CTCA physicians. Since my platelets are 177 (I still can't get over this) now is the time to do any biopsy. As he explained it to me, since nobody has done a biopsy we still don't know what is going on in my lungs. As the CTCA physicians tell me based on the SIZE of the nodules in my lungs it is metastatic disease.
HOWEVER, Dr. Bibb has valid points. He says if they don't have a pathology stating metastatic disease, they can't prove anything. With my platelets being so FUNKY and NEVER doing what we WANT them to do, why would I start chemo to treat my whole body when the cancer might not be everywhere. My body is destroying the platelets, why give me chemo to destroy more platelets if the cancer hasn't metastasized? He was going to speak with Dr. Borst and get things in place for a lung bx early next week.
WELL...as most of you know how I can be I took it into my own hands and I called my pulmologist and let her know the situation. She confirmed to go forward with the lung bx and even submitted a new order, and my recent labs. I was speaking with Michele Dr. Borst's PA and she tells me "there are many steps that need to be taken before we can just order the lung bx. I need to talk to Dr. Borst and he needs to approve it and then we have to call your pulmologist and get her to order it, then it has to be approved by insurance, you will need to then get interventional radiology to approve it and then hospital will need to schedule it and then they will call you" I let her know I already talked to my pulmologist and she approved it and sent in new orders with recent labs, I already had an authorization on file with my insurance and I had already put in a call to the hospital to get it scheduled but their computers were down. So I will schedule it ASAP when the computers are back up. She responded with "I will still need to talk to the boss man" meaning Borst. I said "OK whatever" and hung up. If I have an order on file and my pulmologist is approving me to have it done, then no matter what "the boss man" says I am having the lung bx done!!! Well she calls me back a few minutes later and says "I talked to Borst and he said he would like you to come in on Monday at 1130am so I can do an exam and then we can get things moving for the lung bx." I asked her why I needed to come in for a vaginal exam when we are talking about a LUNG bx...my vagina isn't going to tell her anything about my lungs" she got really quiet and said "he just wanted you to come in for an exam" I said "it's not necessary and I have too many appointments already on Monday"
PLUS I have an appointment scheduled already WITH BORST HIMSELF for Thursday. So she said to keep it on Thursday but they can't order anything until I see him. Well since he isn't ORDERING anything and my pulmologist is...I will schedule the lung bx for Tuesday! :) I know how to get around this little system she seems to THINK she has.
So I have taken my care and put it back in the proper hands...MINE!
I have been feeling so out of control of my own life and medical decisions lately it's not even funny. These little decisions made me feel so POWERFUL. I know it seems small to most of you, but for me it's huge! I can't remember when the last time I felt IN CONTROL of ANYTHING...actually yes I do that was LAST APRIL, before I was diagnosed. Back when life was NORMAL, when my life didn't consist of doctors appointments, labs, vitamin c infusions, and biopsies! Back when my biggest concern was if I was going to eat PIZZA for dinner or a CHEESEBURGER! It's so frustrating and I have talked to SO many of my SCCC/LCCC sisters and that's the main COMPLAINT every one of us has...feeling out of control and FRUSTRATED.
Between Scott and I we have researched every possible solution. I have doctors looking at my medical records in MEXICO, BEVERLY HILLS and even HUSTON. I am now being sent AGAINST MY WILL and by Borst to BANNER MD ANDERSON. It seems he doesn't know what to do with me. He thinks BANNER MD ANDERSON can help me. I am not happy with this decision as I have been fighting against going to BANNER MD ANDERSON since the day I was diagnosed. I haven't heard ANYTHING good about them, and this is MY LIFE we are talking about, not something I am willing to just put in any ones hands. I HATE so much that this is where I am being sent. I HATE that NOBODY can figure ME out. I remember when I was first diagnosed my PCP at the time told me "you are going to end up being a clinical trial"
Here I am being sent to clinical trials cuz they "just don't know" that's BULLSHIT! Since I am being sent to MD Anderson, I took it upon myself to find out the best doctor to see...I contacted a specialist in Huston at MD ANDERSON and he gave the the best point of contact here in Arizona. I have already set in motion actions at BANNER MD ANDERSON.
I have been reading books and doing my research and I have changed my eating habits and my lifestyle and I take supplements three times a day and I am DOING all the stuff a "cancer patient" should do and you are telling me "we just don't know"! My med/onc today tells me "if it has metastasized to the lungs we are in a whole new game of baseball here, we are talking INCURABLE" To which I told him "INCURABLE" isn't even a word in my vocabulary. I am sorry but I don't know what that means. I WILL be cured one way or the other no matter if it has metastasized to my lungs or not. If you can't figure it out I will find someone that can. I would appreciate it if you didn't use words like "INCURABLE". That was the end of that.
So I left there today feeling pretty empowered. It's a feeling I would like to hold on to for as long as possible. I am just afraid with this diagnosis those feelings don't last long typically. I know the feeling of being lost and confused will set in sooner than I would like. It's just a day in the life of cancer diagnosis.
So for now I am holding on, fighting and staying as positive as I can. I am treading water and I think barley keeping my head above water, but the good news is...I am still treading water and my head is STILL above water. :)