Thursday, May 9, 2013


It's SUPERHERO THURSDAY here in Arizona. I am not sure if I qualify as a real "SUPERHERO" but I sure do feel like one today...I am being pulled in so many directions I don't know which way is up. 
I returned from CTCA and THOUGHT I had all my questions answered and a plan in place for moving forward with my treatment.  HOWEVER, as it turns out that doesn't seem to be the case. 
As I was in the infusion center at Arizona Oncology this week getting my IVIG, Michele Dr. Borst's PA approaches me and wanted to know how things went in Chicago. 
(We have been texting back and forth since I got home.)
I let her know last Thursday 05.02.13 what the treatment plan was and that Dr. Williams from CTCA would be calling either her or Dr. Borst to touch base. 
After seeing her on Tuesday and they still hadn't touched base, I was beginning to wonder if this "co-management health care" was for me.  I called CTCA to get my records faxed to Michele so they would have them for my appointment TODAY.  Well after many phone calls and long hold times, the records were finally sent and received late last night.  Dr. Williams FINALLY called Borst.  This was also after Michele called and left THREE message for Dr. Williams, and I called twice.  So things were moving along........OR SO I THOUGHT!! :(
I had an appointment with Dr. Borst today at 12:30pm.  I show up and sign in, only to sit in the waiting room for half an hour.  I finally get called back to a room, to only have to wait an addition HALF HOUR.  I was also scheduled to see Dr. Rubin my Naturopath at 2:30pm in Scottsdale.  I told Scott "let's go, we are leaving".  As we are on our way out of the office his MA comes chasing after me and says "are you leaving?" I look at her with this dumb look on my face and say "UH YES, I have an appointment at 2:30pm in Scottsdale I can't wait here all day." She looks at me and says "well Dr. Borst is ready to see you now."  I said "Well he will have to call me to reschedule, I can't wait around all day I don't have time to see him now."  She was all huffy and says "ooookkkkaaayy" and walks off.  Scott was so worried they would be mad at me. My response: I DON'T GIVE A SHIT IF THEY ARE MAD...I AM MAD!!!  My time is just a precious as HIS!!!
So I left and made it ON-TIME to see Dr. Rubin.  I JUST ABSOLUTELY LOVE DR. RUBIN...and I can't thank Marsha Larson enough for referring me to him.  I'll get into that in a minute...
I don't know and probably won't know what the plan is with Dr. Borst and his crew, but for right now I am so close to firing them it's not even funny.  The doctor is ONLY as good as his office staff and right now his office staff SUCKS A BIG FAT ONE! While I was in the infusion center on Tuesday talking to Michele we were briefly talking about CTCA and the plan.  I let her know that they wanted to put me on an oral chemo called Temodar.  She got this dirty look on her face and says "why would they do that, you don't have a brain tumor and that's what that medication is for" I said "They have used it before with small cell and small cell is small cell no matter where it's at in the body and this medication and reacted to it well" she just kept batting down all my answers.  I was getting frustrated and annoyed.  So now at this point I am not sure what to do. Who to listen to or where to go from here.  I was suppose to get all my questions answered TODAY when I saw Borst, but since that didn't happen I left feeling hopeless. 
I headed to see Dr. Rubin and not really feeling it...and frankly dreading going to see him.  This is the first appointment I have had with Dr. Rubin without Scott with me and I think I had some nervousness over that too.  Well I got to Dr. Rubin's office and they are just so friendly and personable and just AWESOME.  I meet with Rubin and first thing he says is "HOW WAS CTCA? TELL ME ALL ABOUT IT!!!" I tell him all about it and my labs, scans, the progression of my disease, what just happened at Borst's office and how frustrated I am and I don't know who to believe and what to do.  I was feeling hopeless.  He right away made me feel better.  He said "CTCA is a RESEARCH FACILITY for one, which means they have used this oral chemo on patients with small cell and have positive results.  They aren't just giving the old tired chemo to all the patients that aren't working in the first place.  So yes of course your Oncology team here is going to react this way, their research doesn't show Temador to work for small cell but for brain tumors, but they also haven't tried it either." I told him Michele said it would totally wipe out my platelets (what I have left) it would be too hard on my system.  He says "well they are giving it to you in a low dose, so it might and it might not." Rubin seems to think the Temador is the right way to go, once my platelets are under control.  He thinks CTCA is the place I need to be and will support me in any decision I make.  Rubin said also that he has heard a lot about Temador and it working with small cell...He added another supplement to my daily regimen. Which is another supplement to slow if not STOP the spread of the disease.  We now have labs indicating my cancer markers and he believes that now that we know what my markers are, we can start changing the my levels with supplements to cure me of this nasty disease.  I will add a powder substance to my daily routine twice a day in hopes this helps to slow the growth and eventually stop and kill the cancer.  Dr. Rubin is an amazing doctor.  He gives me the HOPE and STRENGTH to keep fighting, that's what I had lost today at Dr. Borst's office. 
This I believe is what a doctor, an ONCOLOGY doctor should do for you...Give you HOPE! 
After talking to Dr. Rubin, and hearing him out I think I have decided to go with the treatment plan CTCA has come up with.  Once I get my platelets on board and find out what's going on with them, I will start the Temador.  Dr. Rubin said he has many patients on this medication and they do very well, hardly any side effects. 
I have my bone marrow biopsy tomorrow and will have the results for that in about 7-10 goes the waiting game again.  I hate this part.  Dr. Rubin doesn't seem to think they will come up with anything with the BMBX, nor do I and nor does Dr. Bibb...but we have to rule it out.  I am having my BMBX tomorrow at Banner Desert.  I will check in at 8am and it should only take like 30 minutes.  Ashley is off tomorrow to be my taxi driver! haha Thanks again Ash! :) Maybe I can treat you to lunch to thank you for all your help! Be thinking of a good healthy yummy place to eat!
My IVIG went pretty ok this week.  It was a long week.  Long days and a LOT of fluid.  One of the side effects of the IVIG is headache, I have had one for two days...what a joy this has been.  I hate headaches.  My platelets on Tuesday were 33, they were 111 last week.  I had them drawn again on Wednesday and they were 61.  They are at least going up, just not as fast as I would like to see them recover.  I will have them drawn again tomorrow before the biopsy.  IVIG comes in 10 gram bottles that is about 200 ml, I had to be infused with 8 bottles each day.  Well since scheduling screwed up and put me on for 10am and we didn't start infusion until 11am, I had 6 bottle on Tuesday and 10 bottles on Wednesday. 
 I was feeling fine for the most part no serious side effects.  Just the headache, extra full feeling.  I felt water logged.  Its a miserable feeling.  I am glad it's over.  I hope I don't have to do this IVIG again.  8 hours each day sitting getting infused is just too much for one person to handle.  I have high hopes that after that BMBX is over and we get the results back on that and I am finally cleared of any type of BONE CANCER, (which could be causing the low platelet count) I will then be put on a medication for my platelet's and the ITP to keep my levels at and in normal ranges.  Which will then allow me to start the Temador oral chemo. I can't tell you how ready I am to get on this oral medication and start kicking cancer ass again.  I am so sick and tired of not having anything done and then to get scans and see the dang cancer has metastasized to yet another part of my body.  It's frustrating and so irritating.  I am doing everything I can on my end to keep this from happening and yet another scan shows it's in a new area.  Then to have Dr. Borst's office tell me this isn't a good plan, well it's a PLAN, and it's at least SOMETHING!!  Whereas they aren't doing anything, I had my last chemo on January 4th, 2013.  I had a physical and follow up 6 weeks later with Dr. Borst and was "clear".  Only to have a chest xray done in February and show mets in my lungs.  So they have known since February that I have possible mets, and yet here it is MAY and we are still sitting on our asses doing nothing.  I have had it! I have called several different treatment facilities throughout Arizona, California and even Mexico.  I am getting my PET SCANS and PATHOLOGY reports into the hands of many well known physicians.  That will review my records and tell me if I am a patient they can help.  All three of these physicians have many years of experience in either neruoendocrine cancers, or small cell cancers.  I however am not looking forward to having to travel and go outside of my home state to get treatment, but I have to do what I have to do to save my life.  The best part about this is, once they physicians receive my records it's just a matter of them reviewing them and telling me "yes I can treat you, or no I can't".  If they CAN treat me I will then set up a consultation appointment and go from there. If they can't we are back to the drawing board.  I don't think at this point in my treatment that any more opinions are going to hurt.  SOMEONE out there has to know about small cell and SOMEONE has to be able to figure out my disease and TREAT ME! I just know it!

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