I have a LOT to update you on. I told you it was a week for the books. Put your reading pants on and sit back and get comfortable.
You wouldn't be here reading this if you weren't interested....right?
First things FIRST...
I got my lung biopsy results back, it was POSITIVE for metastatic disease. This means the FUNK in my lungs IS in fact this BITCH. Nothing else really is important other than this changes the game...A LOT.
This dirty BITCH is fighting DIRTY.
I will fight DIRTIER.
Secondly, I saw Dr. Borst today. My appointment was at 11:45am today and I got there at 11:38am and was waiting for labs before I was called back to see Borst himself. I got my labs and was ushered to a room to wait for Borst. UGH I am sure it didn't help I had a CHIP on my shoulder BEFORE even going in for my appointment. Ashley, Mom and I were all sitting in the room with Kayla his MA when Ash got a text from Colleen (the babysitter) and she had read it to me. The text wasn't ANYTHING bad, but just saying something along the lines of "they still made you wait, you think they would have learned their lesson after the last time when she walked out"
Kayla says "is there a problem with this appointment? I think we are doing pretty well" To which Ash responds "I was reading the text to her" as she points to me. MA responds "I would appreciate it if you would hold your conversation about our office until after I leave the room, I am sitting RIGHT here" Ash says "that's fine we will talk about you after you leave the room".
First of all bitch don't even get me started, I will talk about WHATEVER I want to, if it weren't for ME, you wouldn't have a job! That's OK...ONE more reason for me to SWITCH my care.
Borst finally comes in...
(let me just remind you we had been in the office for over an hour by this time.)
To catch you up to speed, I was asked at Dr. Zaky's office on Monday to bring my SIMS CD to Borst so he could VIEW it. Also since I went ahead and had my lung biopsy done WITHOUT his "approval" this appointment was SUPPOSE to be him giving me the APPROVAL and giving me clinical trial information.
OK....back to him coming into the office. He for one DOESN'T even ask for the SIMS CD. Which why would that surprise me? Really, why I am still shocked? He didn't even talk about my lung biopsy. I didn't bring it up either. Why would I? I already had the biopsy, and I already got my results. He did ask that I get a physical. To which I said sorry pal I have had TWO this week and it's ONLY Thursday, NOT happening. He didn't really know what to say after I said no. Apparently not many patients say no?
He asked if I was able to get into BANNER MD ANDERSON...I said yes, they didn't really give me much more information than I already had. He said he was sorry about that. He suggested a clinical trial "T-Gen". To learn more about T-Gen visit:: https://www.tgen.org/ He is going to see what he can do to get me in to see them. I have already put a phone call into the folks at T-Gen to see if they take my insurance for one and two to see if they can tell me since I have ITP and have done IVIG if that will exclude me from the trial. I am waiting a return phone call. IF I can't get in to see them he is going to consult with Bibb and come up with a chemo treatment plan. Which should be tricky for him considering I have ITP and no matter what chemo I get it will destroy the platelets even more. I am in a STICKY situation here.
That sums up my appointment with him. Can you tell it was a rather quick appointment. I think from the time he walked in till he left was maybe a WHOPPING 10 minutes. WASTE of my TIME, and GAS driving ACROSS town. I knew this was going to happen.
Let me talk to you about MY SITUATION...I have ACTIVE bitch in my body. In my pelvis, lungs and right adrenal. This has been confirmed. It's spreading like wild fire and nobody seems to be able to do anything about it.
My first BOUT with treatment caused drug induced ITP. Which means in short that I can't get chemotherapy due to the fact that my body is already ATTACKING itself and chemo could be fatal.
I AM able to get radiation. HOWEVER, they can't radiate my ENTIRE body, and since I have at least 10 tumors in my body what gets RADIATION? They want to focus radiation on just the pelvis. I have four tumors there. One in the adrenal and at least 5 in the lungs.
BUT...they can't even tell me if the radiation will work. Since I had radiation the last time, my "parts" are just about maxed out for radiation. My rectum can get up to 65 gray. Which is the strength of radiation to this specific area. Last radiation treatment I got 50 gray.
That means I can only get 15 gray to the rectum before more SERIOUS side effects happen. Same goes for my bladder. My bladder can get up to 75 gray and received 50 last time.
Here's the TRICKY part...
Remember how I told you the tumors in my pelvic were putting pressure on my rectum and bladder but NOT invading those spaces? Well this means no matter what she will have to radiation some portion of my rectum and bladder in order to radiate the whole tumor.
LET'S PRAY SHE KNOWS WHAT SHE IS DOING!
No physicians are able to tell me if I can get IVIG and chemo the same time. None of my physicians have ever treated a patient with chemo and IVIG at the same time.
I have asked Dr. Borst, which just told me to ask Bibb. Bibb says he hasn't done it before and doesn't know how it will work but will consult with Bosrt. (that's clearly going to go far) I asked my new physician Dr. Schulmbrecht at BANNER MD ANDERSON, as he said the same thing...he has never done it before so he isn't sure.
SO WHAT DO WE DO NOW??
Like I said I saw BANNER MD ANDERSON. I saw a Dr. Matthew Schulmbrecht. He is YOUNG...which doesn't mean anything. Like I've said before he comes HIGHLY recommended by a physician I know of at MD ANDERSON in HUSTON. Dr. Schulmbrecht has even studied small cell in the cervix before and has much knowledge about small cell. I WILL be changing my care over to him. I know I fought tooth and nail and HATED every thing about going to BANNER MD ANDERSON, but in the end I think giving my situation, given that fact that everyone else has given up on me this is where I need to be. No matter how much I hate it. I need to be with a physician that has experience in treating SMALL CELL.
While I was seeing Dr. Schulmbrecht he did a physical and a total work up. We spent some time with him going over my options. He was totally honest with me. I like that about him. NO beating around any bushes and NO sugar coating it. My kinda physician. :) He told me he felt I was positive for metastatic disease. This was before I got my results back on my lungs. Which every physician I have seen has told me this. He said small cell is not curable. BUT I can still live a long healthy life WITH small cell I just need to the right care.
It's aggressive. NO SHIT.
He is going to present my case to the tumor board tomorrow (FRIDAY).
The tumor board is a board of Oncologist that meet every Friday to review cases that are UNIQUE, and RARE. The whole team then comes up with a plan or course of action that would best benefit the patient. He will call me tomorrow and let me know what the plan is.
He is also going to see if since I have my SIMS CD that I can get that in the hands of his Radiation Oncologist and see if she can make a plan for me based of the SIMS CD Zaky did.
I might be able to get started with radiation with BANNER MD ANDERSON without having to do my SIMS all over again. Say your prayers this happens as it will save us WEEKS!!! If for some reason she can't, then I will have to schedule a consult with her, then redo the mapping and then she will have to come up with a plan of treatment and that could take WEEKS, weeks I am not willing to WASTE.
In the mean time, I have a follow up appointment tomorrow with Dr. Bohan, she is my lung doctor. She is going to give me the results I already have on my lung biopsy. I think I will be cancelling this appointment. I kept it on since no physician has actually GIVEN me my results, but since Borst called me with this tonight I will cancel that appointment.
That's at 10am tomorrow. We cancelled the appointment we had at noon with the alternative treatment center in Scottsdale, they don't take insurance and my day tomorrow is going to be by far the most hectic. I don't have time for non insurance taking offices. Nor the money.
I see the Cyber-Knife Radiation office at 2pm and they DO take my insurance! Ha! When I talked to Dr. Schulmbrecht I asked him about this type of radiation and he said it sounds cool, but really the radiation machines they have at BANNER MD ANDERSON are just as precise. He suggested I go and talk to them and get a second opinion on radiation, what can it hurt??
Like I had just mentioned Borst called me tonight with my lung biopsy results.
He said Bibb wants to see me tomorrow. So that will be added on to my day SOMETIME tomorrow...not sure when...but he will FIT me in. He wants to try putting me on something called Rituxan. This is suppose to help with my platelets...? We will see. My platelets were 177, remember that day? I was so excited they were 177. Well every time I get labs, my platelets are going down, down, and down. Last Friday 177, Tuesday this week 157 and today 147. They are steadily decreasing. THIS ISN'T A GOOD SIGN. Means the ITP is working over time, and the IVIG will be needed more often, and finally if in a weeks time my body can destroy 30,000 platelets what is it capable of doing with CHEMO in my system? SCARY thought!
I will meet with Bibb tomorrow and see what he has come up with. Say your prayers he has COME UP WITH SOMETHING!
To top it all off I have to take Sophia back in for her post op surgery appointment. That's at 440pm tomorrow. I am GLAD Monday is a HOLIDAY and everyone is CLOSED! Ha ha I NEED the weekend to recover from the week!
I am scheduled for Tuesday to start radiation with Zaky. I will keep that appointment until I speak with Schulmbrecht and see what he can do for me. I pray he can do something for me!
I called Rubin's office today and let them know my lung results. His office is what a doctors office SHOULD be. I told Andrea (one of his office girls) what my results were and that I needed to be seen. She told me his first available was 6/7/13 @ 930am. I took it of course.
However, she told me I will give him the message and if we have to move some other patients around to get you in sooner we can. Rubin was out of the office today so she will talk it over with him tomorrow and call me with a new appointment time, she knew he would want me in sooner. PLUS they are NEVER behind schedule! :) I know Rubin will be the one to cure me of this bitch.
Here's do moving mountains!