Not so Much Light...

As quickly as my hopes appeared with the news that my MIBG I scan was being scheduled, they were quickly dashed two days later when the scheduler called to let me know that nuclear medicine would not allow them to schedule the scan until the results of my octreotide scan were in...(the octreotide scan was done on Wednesday and Thursday of last week, the 22nd and 23rd of Sept.).

Danny and I went to my oncologist appointment on Monday morning, the 27th, and not expecting much, that's pretty much what I got:

• My octreotide scan showed nothing...no tumors...so I asked about the tumor at my mesentery and he reiterated that there were no tumors showing up in the scan.  I joyously shared with him that the procedure in which the doctor soaked some type of foam in chemo and packed it around the tumor must have worked.  His quick response was that chemo doesn't work on carcinoid (so why did I have two chemoembolization treatments on my liver earlier this year which really DID kill tumors, and how is it that the tumor at my mesentery is "gone"?).
• He brought up the MIBG I scan and said that he had spoken with Dr. Boudreaux in New Orleans, whose reason for wanting the scan did not convince him to order it...data doesn't support having it done.  MIBG is another option for treating carcinoid,  but since OU Medical Center doesn't offer it as a treatment, heaven forbid we should do the scan as a precautionary method to make sure nothing is hiding somewhere!  Danny and I have both researched MIBG and it is used a lot in children, is less expensive than other scans, and detects "stuff" in bone marrow.  Qubaiah said he would order the scan if I really wanted it, but in the same breath pretty much said he wouldn't.  He asked if we understood his reasoning for not ordering it, and Danny told him that Dr. Boudreaux would not have ordered it if it were not important, and mentioned that the doctors in New Orleans are specialists in carcinoid (Qubaiah has only a handful of carcinoid patients).  I simply smiled and shook my head in understanding...I have plan B to fall back on.
• He alluded to the surgery I had in May as having been much too aggressive and said that the surgeons at OU Med Center would never be that aggressive.  Guess who won't be having any surgeries there!!!???  He said that I will always have carcinoid, (which I knew) and as long as the tumors aren't bothering me there's no need to be aggressive.  That comment still floors me!  It's bad enough to have cancer...I sure don't want to be told "If it ain't broke, don't fix it"!
• He ordered a battery of blood tests (6 vials) at the drop of a hat, so between that in one arm and the 2" bruise I have on my other from the octreotide injection last week, I'm in great shape.

And so, in conclusion, I think he's an idiot and since I need an oncologist who is aggressive about treating my cancer and who will work with my doctors in New Orleans, he will most likely be replaced.

There's Light...

A couple of days have passed since I mailed "The Letter" to my oncologist, and I amazingly received a call this morning from the "scheduler" who let me know that she is in the process of getting my MIBG I scan scheduled.  When I got home from school, I had a message from the oncologist's PA stating that she had spoken with Dr. Woltering in New Orleans and he still wants the test run (DUH!!!) so she's in the process of getting it scheduled.  Maybe between the two of them, it will get scheduled before I go for my appointment...

As for the two blood draws that the lab needs, I thought I had better find out what the tests were for, so I called today.  Sure enough, one of them is a test to see how much octreotide is left in my system toward the end of the month.  I had my shot on the 8th, so it's pointless to have that test run now.  The person I spoke with told me they had never even heard of this particular test, so I'm not feeling too confident in the expertise of the OU Medical Center when it comes to carcinoid...

If it Weren't for Murphy's Law...

The testing continues as I prepare for my follow-up visit to New Orleans next month...

I did a 24-hour urine collection Sunday into Monday, for a test which is called a "5H1AA", a serotonin byproduct produced by the carcinoid.  Hopefully it will be as low as it was the last time I had it done...the results were in the normal range.  Yesterday I made the trek to the OU Medical Center to deliver my speciman, and when I got home, there was a message from someone at the lab.  Of course when I returned the call, I was sent to voicemail, but the gal DID call me back at school today to let me know they needed me to come back and give 2 more vials of blood.  It seems that on the first of the month when I initially went and had to wait so long, the vampires were not familiar with all the tests that had been requested and didn't even have the correct vials in which to collect my blood.  Needless to say, it would have been nice to have known this bit of info yesterday, and it would have been even nicer had they had something in my file that would have caught the receptionist's eye so I could have had it done while I was there.  But no...I have another trip to make to downtown or midtown OKC this week!

On another note, I'm still calling the "procedure scheduler" to find out if Dr. Qubaiah is going to order the MIBG I test that he insisted I do not need.  I keep getting the run around, and in anticipation of that happening yet again, I wrote Dr. Qubaiah a blunt and to the point letter last night which I mailed after school today.  I let him know that I was a passive patient for 5 years while being told I had irritible bowel syndrome and "nerves" because school was getting ready to start.  I sent him a copy of the results of a scan which had been done in December, 2009, which stated an irregularity on my kidneys and spleen.  I told him that I am no longer going to be a passive patient and that I would appreciate him ordering the scan.  When my gynocologist gave me the carcinoid/carcinoid syndrome news on December 16 with absolutely no compassion, it was the worst day of my life.  I prefer to not have any more surprises like that!

Please remember me in your prayers as I climb this mountain!

The Testing Begins

I went to OU Medical Center to have my blood drawn (6 vials!!!) on September 1.  When I checked in, I was told it would be about 5 minutes (I was the only patient there), which turned into 30 minutes.  The receptionist went back to check on why it was taking so long, and SHE was gone for an eternity.  Finally the vampire came out to get me and was very apologetic that I had to wait so long...they were having trouble finding what they needed to draw my blood???  I didn't quite understand the issue, but at least I didn't have to make another trip down there.

A couple of weeks ago, I received a call from Dr. Qubaiah's office regarding the octreotide scan and the CT scan I'm to have done at the end of September.  I requested Friday the 24th since we're out of school and late afternoon on the 23rd (for the injection prior) since we're out early that day.  Several days went by without a return phone call, so I called the person handling the scheduling and learned that it was in the process of being scheduled.  Several more days went by and I called again and learned that I have to go in the morning of the 22nd for the injection, the afternoon of the 23rd for the first scan and possibly the 24th for a second scan.  When I asked her about the MIBG I-123 scan, she said she has contacted Dr. Qubaiah's PA, who hasn't given her an answer regarding what is going on with that procedure, so I'm guessing she hasn't contacted Dr. Boudreaux.  I'm really frustrated...

My New Oncologist!

August 2 I met my new oncologist, Dr. Qubaiah, at OU Medical Center.  After having read the highway signs incorrectly (and heading south on I-35 instead of north on 235), I made it to the appointment in one piece.  I was impressed with the facility (except they charge for parking), and I was promptly escorted to the exam room at 8:00 a.m. (my appointment time).  I first met with Dr. Qubaiah's PA, which was an inconvenience since the same questions she asked, he asked later.  I should be accustomed to that by now, especially at a teaching facility, but I find it very tedious.

Once Dr. Qubaiah came in, everything went well until I handed him a list of blood work and scans Dr. Boudreaux requested I have done (at specific times during the month of September) before my return to New Orleans in October.  All the procedures are typical for carcinoid patients, and I've had them all done with the exception of an MIBG I-123 scan, which is a whole body image.  Dr. Qubaiah literally put on his brakes and said he didn't agree with that request and because I have carcinoid, there's no reason for me to have that scan.  Of course, I couldn't remember the reason Dr. Boudreaux gave me for having the scan, but it made perfect sense when he explained it this past July.  Finally Dr. Qubaiah cooled down and told his PA to contact Dr. Boudreaux to determine the reason he wanted the scan. 

He seemed to take issue with the fact that certain procedures were to be done at certain times during September.  He explained that (with the exception of the MIBG I) he would have ordered the same tests and scans, but he would have ordered them sooner.  I held firm and let him know I wanted to follow Dr. Boudreaux' orders.  He finally backed down and wrote up the orders for the blood work for the first part of September.

I have an appointment with him on September 27 at 8:00 a.m. (another mark against him...he's only in the office on Monday mornings) to discuss the results of the procedures.  Hopefully that appointment will go a little smoother.  Were he a carcinoid expert, I would allow him a big ego, but according to what the office staff told me, he doesn't have very many carcinoid patients.  As far as I'm concerned, New Orleans is calling the shots with my health, and I'm not even sure why I need an oncologist here, but Dr. Boudreaux told me I do, so I will.