Third Time's the Charm!

I met my 3rd oncologist on Friday, November 5 and really like him!  His name is Dr. Armor, and I was very impressed.  He had reviewed my records before I arrived, so he knew something about my circumstances.  I asked him if he would have a problem working with my doctors in New Orleans, and he said, "I don't know why I would!", and that spoke volumes.  He reiterated that all the scans showed nothing on my mesentery, so the procedure of packing chemo-soaked foam into/around the tumor seemed to have worked!!  Brilliant!!

Dr. Armor was surprised at my appearance...he told me I don't look "sick" and that he had expected to walk in and find me in a wheelchair after the extensive surgery I had this past May.  I'm certainly not a bundle of energy and the tedious behavior(s) of my students wear me down by the end of the day, but I feel blessed to be in the shape I'm in.  I could certainly be a lot worse.

When I handed Dr. Armor my list of tests and scans to be done before my next trip to New Orleans in April, he scanned it and didn't agree with some of them.  He wasn't sure why Dr. Woltering had requested them unless they were for research purposes (on my dime), and asked if I was OK with him calling Dr. Woltering.  Again, that spoke volumes.  At this point, I'm not so hard-headed and dead-set that I have each and every test on the list because only 6 months will have passed since the last ones, and things DID look good after the last ones.  I'll just wait and see what Dr. Armor finds out and go from there.

One thing I didn't particulary like was the fact that he spoke of my mortality.  I have never wanted to know "how much time I have" and still don't, and Dr. Armor said he didn't think I'd live to be 80 and may not live until 60 (not too far in the future).  I think his point was that carcinoid is still a mystery, but I truly believe that my surgery lengthened my life by quite a bit.  I'm not sure what the whole "you'll always have carcinoid" is all about since the two primary tumors have been removed, unless it's because there are still spots on my liver, but I will have to take the Sandostatin shot every month for the rest of my life.  I pray that something easier is developed in the near future because it hurts going in and for several days thereafter.

Tomorrow is my 11-month milestone, nearly a year since the diagnosis and I'm so thankful for all the positives that have happened during that time.

Benign Biopsy!!

I had my two stitches removed today from the biopsy which was done last Thursday on the redish spot on my collar bone.  It was benign (praise God!) and is actually a "capillary hemangioma".  Basically, it's like a birthmark.  I have no idea what caused it, but I hope no more pop up anywhere!

The MRI I had done last month showed 4 lesions in my liver, but I'm hoping they are scar tissue from the chemoembolization treatments earlier this year.  I'm sending a copy of the report to New Orleans, so hopefully Dr. Woltering can clarify that for me.

The MRI

I went to Mercy today (yes, on Sunday) for my first ever MRI.  I thought I was going to be able to relax and snooze, but since the MRI was of my liver, I had to be an active participant.  And I had to have an IV.  It took about an hour, and was definitely as loud as I had been told, but I had on earphones so the tech could communicate with me when I needed to hold my breath, so that cut down on the noise a little bit.  I didn't feel too claustrophobic because I was sent into the machine, and it didn't come down to meet my face.  The noises were really weird...they almost had a beat to them, so I entertained myself figuring out what songs the beats resembled. 

I'm so glad they offer the service on the weekend, and grateful I didn't have to miss school.  The purpose of the MRI was to get a baseline, and I get to go through it again in 6 months.  I should start glowing in the dark really soon...

Worldwide NET Cancer Awareness Day

The very first "Worldwide NET Cancer Awareness Day" will be held on Wednesday, November 10.  NET (neuroendocrine tumors) cancer is also referred to as carcinoid cancer.  I have emailed the Yukon Review and the Oklahoman to see about getting an article in the paper on the 10th.  For more information about the day or NET cancer, check out the website:  http://www.netcancerday.org/ .

The Spot

Labor Day weekend, a small, red, oval spot appeared on my collarbone.  It didn't itch or bother me, it just showed up one day.  A few days later, I had an appointment with my primary care physician, and he diagnosed it as a rash and told me to put Cortaid on it.  I did so, but then a day later, a full-blown rash appeared.  When I went to my oncologist appointment on the 27th of September, I took the name of a medicine a former doctor had given me to clear up such a rash on my midsection, and he called in the prescription, but it was the wrong one.  It did, however, somewhat clear up the rash.  The red spot turned brown, then red again, and the other evening it itched.  After having scratched it, I looked in the mirror and was shocked to see a larger, really red spot.  (That morning, the spot was brown.)  At that point, I was convinced I have melanoma.

I had an appointment with my primary care physician on Oct. 21, and when he looked at it again, he didn't seem to think it was anything alarming, but scheduled me for a biopsy on the 28th.  (Missing school yet again!)  On the way home, I remembered that I'm to have an octreotide drip when I have any procedures done.  I called Ochsner Medical Center and was told that I DO have to have the drip for a biopsy, so now my primary care physician is in the process of finding out if I really do have to have the drip.  If so, the simple, 30-minute office procedure will have to be changed.

Some carcinoid cancer tumors cause unexplained rashes, and I have gotten them twice a year for the past five years.  When I showed the (then brown) spot to Dr. Woltering, he blew it off and said that what I have is NOT caused by the carcinoid and that it could be skin cancer.

If it's not one thing, it's another!  I still feel blessed, however.

Mixed Emotions

Tuesday, October 19, Danny and I flew to New Orleans for my second follow-up after my surgery.  We met Dr. Woltering for the first time, and I was a little put off because he knew nothing of my case.  I had to tell him I had surgery in May, then he flipped through my chart and looked at the results of the tumor studies done after my surgery, and briefly looked at my recent test results.  He explained in-depth how my tumors have very little activity (Dr. Boudreaux did that when Jess and I went down there in July), and explained the benefits of black raspberries in squelching the development of new blood vessels in the tumors.  Dr. Boudreaux had mentioned that my tumors responded favorably to black raspberries, but didn't give us details.  Dr. Woltering told us we can order freeze dried black raspberries online (which I did in July, but couldn't figure out how to consume the powder), and explained how to make a tea.  The powder is very expensive (I paid $25 plus shipping for 5 oz.) and I'm supposed to consume 60 grams (2 oz) per day by drinking the tea.  I don't see how it would be possible to make a tea using 2 oz of the powder...I used 1 tablespoon and that amount really thickened the tea.  Sixty grams would have to make it the consistency of syrup!  At any rate, I'm hoping 1 tablespoon per day will offer some benefit, because that's about all I can do!

Regarding test results, little was said about them.  It seems that not much is going on right now, so we assume a wait and see pose.  I asked about the enlarged lymph nodes in the cardiophrenic area, and Dr. Woltering's response was that it's like the invisible rattle snake in the corner.  As long as it remains invisible, we do nothing, but when it rears its head, we remove the lymph nodes.  I'm still somewhat concerned because if I'm reading the report correctly, the nodes have enlarged since a previous enlargement...hasn't the snake reared its head?

I met the dietitian, who expressed concern over the fact that I had lost weight since the last appointment (2 pounds), and it was determined that my body is not processing fat since my gall bladder was removed, so I now am taking a pancreatic enzyme called Creon with every meal and snack.  I'm to take up to 3 pills with my snacks and 3 with my meals.  I also have "dumping syndrome" (not my terminology) and have to change my diet.  I'm not to drink with my meals (either 30 minutes prior or 60 minutes after) so the food I eat is not flushed out, and many of the foods I love now have to be eliminated.  I have to keep a food diary to determine how different foods affect me, and will go from there.

I had to have a couple of vials of blood drawn (barely felt it) and am going back to see Dr. Woltering on April 5.  Prior to that, I have to have all the scans and blood work done here again, so guess how I'll be spending my spring break...

Dr. Woltering asked if I had ever had an MRI done, and that's probably the only test I have not gone through.  He wants one now (of my liver) and another in six months, so I'm scheduled for that this Sunday.  I'm glad Mercy had that option so I don't have to miss more school.

So, with mixed emotions, I embrace the idea that I'm OK for now.  I just hope that I haven't fallen through the cracks after having provided Ochsner Medical Center a hefty income for my surgery.  Hopefully I still matter to them.

of the Tunnel

Day 3 of the MIBG I scan on October 14 went very well.  I was finished after an hour, but the radiologist wanted to see the CD containing the Octreotide scans for a reference point.  Since I was covered at school until 11 a.m., I ran home to get the CD so they could copy it. 

The next day, my primary care physician called to let me know he had the report and that it didn't show anything.  So there truly was a light at the end of the tunnel!

...at the End...

Day 2 of the MIBG I scan went better than day 1.  I wore a sweatshirt and didn't get AS cold, and I napped during the scans so the time went by very quickly (I woke myself up a couple of times, snoring).  At 9:10 a.m., the machine began to shake and shimmy, which was something I had never experienced and I had a feeling it was due to an earthquake.  Imagine my surprise as I was driving to Yukon and heard about an earthquake at Norman!!

Day 3 went even better.  I was finished in 1 hour instead of 3, but the doctor wanted a copy of the films from my Octreotide scan which was done the end of September.  Of course, the CD was at home, but since I had coverage for my classes in place, I told the tech I would run home and get the CD for him to copy.  I was able to get that done, plus I got a CD with the MIBG I scans to take to New Orleans.  Hopefully my primary care physician will have the MIBG I report no later than Monday so I can get a copy of it to take with me as well.

Yesterday my OU oncologist's PA called me to let me know that the results of the CT scan (done earlier this month) showed that there are some enlarged lymph nodes in my cardiophrenic area (between my heart and diaphragm).  She said the report said this is "worrisome" and that I should be sure to let the doctors in New Orleans know when I go there next week.  I received a copy of the report in the mail yesterday, and it indicated that the lymph nodes have enlarged since they were reported enlarged in an earlier scan, so between that information and "worrisome", I'm a little concerned.  I know I should have faith, and I do, but I'm always waiting for the other shoe to drop...

But, there IS light at the end...

There IS Light!

I completed day 1 of a 3-day MIBG I scan process, thanks to my primary care physician!!  I cannot say enough good things about him...he really cares and is willing to work with my doctors in New Orleans, and had no problem ordering the scan for me (at Mercy).

I felt very comfortable going to my appointment this morning, unlike the feelings I always had when I went to OU Medical Center, so I take that as a good sign.  The iodine injection went well and barely hurt, and the staff in nuclear medicine is very helpful and informative.  I was ready for the scan to be over when I was finally told I had 4 minutes left...it was a LONG 3 hours of lying flat on my back without moving.  It took a moment for my arms and legs to begin working again, and I get to go through the process again tomorrow.

I was given no indication of what was seen, if anything, so I'm anxious to be done with the process and get the results.  The Octreotide scan supposedly was clear, but when I received a copy of the report from OU Medical Center, it said the scan was inconclusive and that a CT scan might be in order.  The following week I had a CT scan, and it indicated that some lymph nodes in my cardiophrenic area are enlarged.  (The cardiophrenic area is between the heart and diaphragm.)  I don't know if that's anything to be concerned about, but I guess I'll know after my trip to New Orleans next week.

My primary care physician is going to refer me to a new oncologist (my 3rd), one in the Mercy system, and I'm glad for that.  My stipulations were that he/she has to be willing to work with the specialists in New Orleans AND be aggressive in my treatment.  I don't want to twiddle my thumbs just because I have no symptoms at the present time...I want removal or treatment or whatever it takes.  I may always have carcinoid, but I don't intend to give it the run of my body!

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.

Surgery Follow-up

Tuesday, July 13, Jessica and I took a marathon trip to New Orleans for my follow-up appointment.  We left the house at 4:45 a.m. and returned that evening at about 10:40.  Was I ever tired, but we had a fun day!!  We arrived in New Orleans a little after 10:00 and took a taxi to the French Quarter.  We strolled through the area for nearly two hours, then had lunch in an outdoor cafe', complete with pigeons begging for food.  After lunch we hailed a taxi to take us to the clinic (a first for me) for my 2:00 appointment.  We weren't sure what we were going to do after my appointment to kill time until our 7:00 p.m. flight, but it turned out we didn't need to concern ourselves with that minor detail...we didn't leave the clinic until after 4:30, so we went straight to the airport.  As we were walking into Subway for supper, we heard someone call Jessica's name.  I couldn't imagine who in the world have known her in New Orleans, but it turned out that four of her sorority sisters were headed to OKC from a convention in Orlando and they were on our flight home.  It's a small world!

One thing I really like about Dr. Boudreaux is that he doesn't get in a hurry when he sees his patients.  He takes his time and makes sure that all questions are answered.  I have to admit, though, that it's not much fun having to wait your turn.  I received a good report, though, so it was worth the wait.  My incision is healing very well, and the markers for tumor growth were all very low (which is a good thing).  Apparently the tumors were "treated" in the lab with a variety of substances, one of which was black raspberry.  The results indicated that black raspberry had a postive effect on my tumors, so Dr. Boudreaux suggested that I eat them to hopefully keep any tumors from growing.  They are not available locally, and to ship a five pound bag of frozen berries costs almost as much as the berries themselves.  I guess you can't put a price tag on health, though, so I will get them ordered today.  (This is my last "free" week, so I'm kicking into gear and trying to get a lot of things done.)

My next visit to New Orleans will be in October, but I won't get to see Dr. Boudreaux.  He's a surgeon and is basically finished with me, for now at least, so I will be seeing Dr. Woltering.  I have a list of scans and tests that have to be completed in September to check my progress, so not much fun there.  Of course, I was hoping to make the trip over fall break, but Dr. Woltering isn't in the office on Thursdays and Fridays, so I have to go earlier in the week.  I'm not crazy about having to miss school, but I really have no choice in the matter.

I have been in the process of acquiring a new oncologist since my surgery, and finally accomplished that this past week.  His name is Dr. Qubaiah, and he's at the OU Medical Center.  I will meet him on Monday, August 2.

Friday, July 16 was my seven-month milestone.

It's About Time!!!

As I recover from my surgery (May 27), and watch my summer slip by, I find that procrastination has come to the forefront.  I don't feel overly bad about it however, because on August 2 I'm back on the clock and life will become fast and furious once again. 

Danny and I headed to New Orleans on Sunday, May 23, and the more we packed the more Daphne (the cat) became nervous.  She hid before we left, so we weren't able to tell her goodbye, and when Jess came to check on her throughout the week, I guess she was pretty pathetic.  She showed us, though...when we got back from New Orleans, she took one look at us, hid under the bed and wouldn't come out for quite some time.

On Sunday, we drove 3/4 of the way to New Orleans and on Monday took a scenic drive which took us closer to the gulf.  We went over some amazing bridges and saw some shrimp boats (Danny's goal) and saw several fields of sugar cane.  We came really close to taking a bayou tour (world famous) but decided against it.  We arrived at Hope Lodge late Monday afternoon and got settled in.  Hope Lodge was built by the American Cancer Society and is totally free for cancer patients and their families while the patient is in treatment.  As fate would have it, our room was available for the entire time we needed it.  It's a really nice facility and the staff was very accommodating.

Tuesday, I had my appointment with Dr. Boudreaux, and it was like meeting a celebrity.  Danny and I had watched a presentation he gave at a seminar sponsored by the Carcinoid Foundation, and that presentation cinched the deal for us...there was nowhere better for me to have surgery than New Orleans with Dr. Boudreaux.  He spent a lot of time with us explaining the surgery and after looking at the CT scans I took with me, spotted a primary tumor on my small intestine (since December 16, I had been told that the primary tumor was in my mesentery, which doesn't happen).  After asking permission to freeze tumors for further study, etc., Dr. Boudreaux asked, "Wanna?" and without skipping a beat I replied "I wanna".

So the process began.  My insurance had to be called for permission (which they granted in a very short amount of time), then I was sent to the lab for 13 (no joke) vials of blood to be drawn and an EKG.  Finally around 2:00 or so, starved to death, we were able to go about our business.  I was to be at the hospital at 5:30 a.m. on Thursday morning for 7:30 surgery, which gave us half a day Wednesday to sight see (pre-op prep was to begin at noon).

Wednesday morning, we set off toward Mississippi and the gulf coast on a very pretty highway.  The sand was beautiful, people were fishing, and Danny was able to see more shrimp boats.  We then circled around so we could go over the 34-mile bridge over Lake Ponchetrain, which was a true adventure.  Due to the curvature of the earth, it's not possible to see the shoreline across the lake until you're about halfway across, and that was a little unsettling.  We made it across in good shape and enjoyed the view.

Thursday morning, 5:30 a.m., we arrived at the hospital and within a short amount of time, I was being prepared for surgery.  My biggest dread is always the IV, and I can always tell if it's going to be a good or bad experience just by the temperament of the vampire.  The nurses decided I needed something to calm me down, but they didn't give it to me until the IV was in place (a lot of help THAT was!).  (The first attempt failed, and even though Danny and I told them I don't want any details, the nurse felt compelled to let me know what happened.)  So that's pretty much all I remember until I woke up in ICU...

As for the surgery, Dr. Boudreaux has performed over 300 similar ones, so I was in very good hands.  He and his team did several things, and it took about 5 or 6 hours.  They removed both ovaries, scraped my uterus (but I don't know what they scraped), removed my gall bladder, found 2 primary tumors on my small intestine and removed a portion of my intestine, removed a small portion of my liver, and put my small intestine back where it belonged...it was twisted and fused to my liver.  I didn't get any pathology results due to Memorial weekend, so I don't know the state of my health at this point.  I'm trying to focus on recovering (the surgery was equal to 3 major surgeries) and I'll find out where I stand when I go to my follow-up appointment on Tuesday, July 13.  Needless to say, I have a list of questions to ask while I'm there!

June 1, I was released from the hospital, and in spite of the doctor's advice to make the 12-hour drive in 2 days instead of 1, we made the drive in 1.  Danny made a pallet for me in the back of the Suburban, and I was quite comfortable there, so I saw no reason to stop and spend the night anywhere.  Danny wasn't tired, we left New Orleans at 8:30 a.m., so we made it home by 9:00 p.m.  Was it ever good to be home!! 

I had a visitor while I was in the hospital...my cousin George and his wife from Houston.  Their son lives about 90 miles from New Orleans, so they made the drive to see us.  How thoughtful of them, especially since my crazy physical therapist chose that time to come in an work with me.  I really appreciated the visit, though, however short!

Who Dat?

It has been a while since I've updated my blog, but I've been waiting for insurance to approve my trip to New Orleans to meet with a carcinoid specialist and potentially have surgery.  I received the news today that insurance has approved the consultation, and when I got home from school I had a message from the Oschner Clinic in New Orleans to schedule my appointment.  I'm scheduled for 10:00 this Tuesday, the 25th, and I will meet with Dr. Boudreaux, who delivered an incredible presentation at a symposium hosted by the Carcinoid Foundation.  Danny found the video online and we watched it several times and learned that the primary tumor probably isn't in my mezentery, as the doctors here are telling me.  In the process of scheduling the appointment and answering a variety of questions, the nurse confirmed that suspicion...the primary is usually not in the mezentery.  Needless to say, I'm really excited for the opportunity to meet with Dr. Boudreaux.

If I am a candidate for surgery, Dr. Woltering (the surgeon) has an opening on Thursday, the 27th, so perhaps I can have the consultation and surgery all in one trip.  I'm feeling really good about the situation, although I hate missing the last week of school.  The flip side is that I will have all summer to get back on my feet.

This past Sunday, May 16, marked my 5-month milestone.

The Plot Thickens

Danny found a video of a panel of doctors who attended a symposium held by the Carcinoid Foundation.  We watched the videos of two doctors who specialize in carcinoid, and the actual panel discussion, and were really enlightened.  It seems that the primary carcinoid tumor could be as small as a pin point or as large as a grain of rice.  With that being said, the tumor located in my mezentery is apparently NOT my primary tumor as my oncologist has been telling me.  (This leads us to wonder exactly how much my oncologist really knows about carcinoid, especially since she asked me if I wanted a general surgeon to operate on my mezentery.)

We were extremely impressed with the two doctors, one of whom practices in New Orleans, and has had much success in locating and removing primary tumors, thus extending the lifespan of the patients.  I had an appointment with Dr. Chohan this past Thursday, and I asked her if she had/has other carcinoid patients whose tumor is located in the mezentery.  She assured me she does/has, and I asked her where she sends those patients.  She told me New Orleans (to the clinic where the video doctor practices).  She was quite ready to get the ball rolling to refer me to the New Orleans clinic and get me scheduled for mid-June.  I put her off because I have to check with my insurance about coverage, and because I have an appointment with an oncologist from the Integrist Cancer Institute this Friday afternoon.  However, after having watched the videos, Danny and I are convinced that New Orleans is the way to go.  It will take a lot to convince me otherwise.

I am feeling really good these days, except for tummy and back issues, but I am able to work all day and have enough energy to do things around the house.  I am so very thankful for that!  A month ago, I didn't know if I'd ever have the energy to function normally again.

I am very grateful for all the prayers, thoughts and cards throughout this journey.  They lift me up more than I could have ever imagined!

April Showers Bring May Flowers

I'm probably the only person on earth who is loving all the gentle rain we've had since Friday!  It's refreshing and relaxing and cleansing. 

Friday, April 16 was my four-month milestone.  It also marked one week back at school, half-days.  That went well, and I have gained strength everyday, so I'm shooting for all day this week.  I am hopeful that I can make it.  It's just as tiring to work half-days and have to get things ready for the last two classes as it is to stay all day, I think.

Today I'm doing a 24-hour urine collection to check for carcinoid markers.  Hopefully, the count has gone down since the two chemo emobilization treatments.  My next step is to have my tumor debulked (reduced) and I'm still in search of a surgeon.  I contacted the Integris Cancer Institute this past week and if the person I spoke with communicated with her co-workers correctly, I am a candidate for their organization.  Of course, the person who schedules appointments was not available, so I'll call back Monday morning.  I'm not going to get my hopes up, but if in fact they do treat carcinoid patients, perhaps they have a surgeon who has operated on a mezentery before.  Danny read online that a debulking surgery can take as long as 12 hours and it's followed by chemo (yuck!).  Needless to say, I want someone who knows what he/she is doing if I'm going to be in surgery for up to 12 hours!

On a side note, I've battled with trying to grow a clematis for the past four or five years.  Danny sprayed my first plant (which didn't do too well its first year) with Round-up, and the replacement was slow to take off.  Last year it had one blossom before the sun took its toll.  This past week I strolled through my backyard, and lo and behold -- the clematis had grown to the top of its trellis and was loaded with buds!!  I checked it today and it has five or six blossoms!!  I'm taking it as a sign from God, and am very thankful.

Spring is in the Air

I feel I have missed so much this year during my recovery process, but I count my blessings that I had so many sick days accumulated.  I have had the luxury of recovering without having to worry about my job, but it has still been frustrating.  Neither my doctor nor the radiologist gave me any indication that I would feel like I had run into a brick wall, yet after the fact, all symptoms and ailments were "just part of it" and to be expected.

For so many weeks I had trouble making it through a quick shower.  I would nearly pass out and have to lie down as soon as I got out.  Make-up and hair were not done unless I had to go to an appointment, and then I had to push myself to get through those two tasks.  Friday night date night (Alfredo's) has been a big effort, but it always made me feel good to go through the grooming process and go out in public. 

Easter is "my" holiday to cook, but since I have trouble preparing a batch of biscuits without having to sit down twice during the process, I decided to forego hosting this year, so Rick and Tracey did the honors.  I had been doing pretty well, gaining strength and feeling good, then had a setback on Friday night.  After our date night, I went home feeling queasy.  Before bed, I threw up, but it wasn't a food poisoning reaction...I threw up once and felt better.  Saturday, however, I couldn't get out of bed.  Sunday, it took every fiber in my being to get ready and make it to Easter dinner.  Feeling hot and clammy, I made it through dinner and after a nap, was ready for dinner number two at Mom and Dad's. 

My plan was to go back to school on Monday, but I decided to wait until Thursday.  Two weeks ago, I acquired a pain in my right shoulder, which prompted a CT scan.  The scan showed nothing out of the ordinary...I have a dying tumor near my diaphragm (I'm feeling it)...but the pain in my abdomen and shoulder are uncomfortable when I cough, sneeze, or breathe deeply.  I have to take pain pills or Tylenol to keep the pain in check, and even so, there's only one comfortable sleeping position...on my back...and that gets old pretty quickly.  The enzymes in my liver are elevated due to the dying tumors, so I have bile rubin which is not being processed (no adverse side effects).

My challenge now is to find a surgeon to do the debulking procedure on my mezentery.  I am at a total loss on how to do this.  I prefer a surgeon who has performed such a surgery before, but have no idea how to locate one.  Dr. Chohan asked if I was OK with the surgeon whom I met on December 16 when this all came about, but I just don't feel she is the person for the task.  My next doctor's appointment is April 21, at which time debulking will be discussed.

Procedure Update

The second chemo embolization procedure seems to have been a success, so much so that I won't have to go through the third procedure as suggested by the radiologist.  For that I'm very grateful, because the procedures aren't too much fun.  The second one went a lot better than the first...I was SO much more alert immediately after and during my hospital stay.  I DID have a lot of stomach pains immediately after and it took a while for the pain meds to kick in and make me comfortable.  Dr. Lee suggested that the naproxin I took after the first procedure could have possibly thickened the wall of my stomach and caused the pain. I also had several instances of throwing up, which I didn't have the first time, and was certainly glad when that finally came to an end.

I came home from the hospital on Saturday (February 27), and the recovery has been very slow.  In spite of the fact that I was so much more alert after the procedure, recovery has not been any more rapid.  Taking a shower still wears me out as do putting on make-up and doing my hair.  I plan to go back to school the Monday after spring break, and am saying my prayers that I'll be able to handle it.  Danny and I had our Friday night date night at Alfredo's this past Friday, and it was a major accomplishment.  The next night we went to Hunan Garden, which was also a major accomplishment and didn't have the same effect as the last time we ate there.

I went to see Dr. Chohan last week, and she said she's going to give me six weeks to mend and then we'll talk about debulking the tumor in my mesentery and removing my left ovary.  Danny and I are lost now...we would really like to have the tumor removed (we understand it's in a tricky location, but shouldn't there be some kind of radiation to zap it??) because if it stays, it will just continue to grow and metastisize.

That's about all that's new for now.  Jessica turned 21 on March 13 and is in Dallas this week with a group from UCO doing things at Ronald McDonald House and the Gilda house.  The first day they were there, Jess had to drive the van because their adviser was sick and couldn't go.  It fell on Jess because she works for the university and is 21.  Who'da thought?

Tuesday, March 16, 2010

Three-month milestone.

Sunday, February 21, 2010

It doesn't make me nauseous to think of posting to my blog anymore, so I'll post some news.  I've been back at school teaching 3 hours a day since Tuesday the 16th, and will continue the same Monday through Wednesday of this week.  I'm feeling pretty good today, although my abdomen hurts when I take a deep breath.  Last week I felt the same but had (left) shoulder pains, my heart hurt and I just felt miserable.  Friday I spoke with Nurse Shelly at Dr. Chohan's office and she told me that my body really took a hit with the chemo embolization procedure and that my pains mean the chemo is killing the tumors in my liver.  She told me to take my pain pills (which I do at night since they knock me out), and to take 2 Naproxen in the morning and 2 in the evening, and to take 2 Pepcid in the morning and 2 in the evening.  Those things really help the discomfort, but I still have a low energy level. 

Danny and I went to a Chinese buffet last night and the food actually had flavor!  I ate 2 plates full plus a cookie for dessert!  Today I've nibbled all day long...not necessarily healthy food, but food with flavor, so maybe there IS a light at the end of the tunnel.

Thursday I report to Baptist Hospital at 7:00 a.m. and am scheduled at 12:30 for my second chemo embolization.  (Hopefully I'll go in on time!!)  This time I'm not so excited about it and am actually dreading it because I dread the recovery process.  Maybe I'll be pleasantly surprised...I AM better prepared this time...I have lesson plans ready through Friday, March 12.

Thank you to all of you following my blog, sending cards, calling to check on me and praying for me!!  I feel very loved and cared for.  Until the next time, "The smallest good deed is better than the grandest good intention."  Duguet  (I have lots of good intentions, and fortunately for me, you do good deeds!)

Thursday, February 4, 2010

I have survived the first round of chemoembolization!  There was nothing about it that was fun or enjoyable and I truly thought I was dying.  During my flat-on-my-back six-to-eight hour recovery afterward, I told Danny I thought we had made a mistake going through the process.  Here's how that day went:

Danny and I arrived at Baptist Medical Center at our scheduled 7:00 a.m. and hung out until 10:00 a.m. when I was taken to a temporary room to wait for my procedure.  The caregiver assigned to me about blew up my left arm taking my blood pressure...literally.  It became more and more painful as the cuff continued to pump up and up, and I finally jerked the cuff off when my arm turned nearly black.  She finally got a different piece of equipment, and things went much better after that.  Next came the IV...fortunately, my nurse didn't have a big ego and when I explained to her my difficulty with having IV's inserted, she turned me over to Daniel Smith, who was absolutely wonderful.

My procedure was scheduled for 1:00 p.m., but the holding room was absolutely packed and it was well after 5:00 before I was taken in.  At that point I had a panic attack, and fortunately the drugs got me through it.  There was some issue with the left lobe of my liver (Danny explained it to me, but I can't remember  what he said) so it took about twice as long as the radiologist anticipated.  Hopefully that's why my recovery has been so tough, and the next 2 rounds won't be as bad.

I had an appointment with Dr. Chohan on Feb. 3 and she seemed to think things were progressing normally.  She thought I would be able to return to work on Monday the 8th, which didn't happen.  I was still having nausea and daily chills and fever.  A week later, I called Dr. Lee's office and described my symptoms and he thought I should give it a couple more days.  Forty-five minutes later, he called me (after having conferred with his partner) and wanted me to go to Baptist for a CT scan to make sure the tumors hadn't abcessed.  I wasn't supposed to drive in case they had to drain the tumors, so I was in a pickle...Danny was out by Enid and Jess was going to be the only person at work that day, so fortunately cousin Kyle was available to take me.  Since they were going to work me in, I insisted he didn't need to stay with me because Danny would be there in a couple of hours.  I have never been worked in so quickly in my life!  Plus, (fortunately) I had no abcesses, so I was good to go a good hour before Danny would be there to get me.  So, Danny called Kyle who graciously came back to pick me up.  (Thank you so very much!!)

Dr. Lee gave me a prescription for Naproxen to nip the daily chills and fever in the bud, which did the trick.  I decided to bite the bullet and go to school for 2 hours on Friday, Feb. 12, which went OK except for the fact that I was totally exhausted by the time those 2 hours were over.  Monday the 15th was staff development, so I went in for 3 hours to work on grading.  That went a little better.  On Tuesday, I went in for 4th, 5th and 6th hours, which wasn't a good idea.  By the time I went in, my energy level had dropped and it was a struggle to make it through.  So, for the rest of the week, I will be working 2nd, 3rd and 4th hours, and I think that will be better.

Thursday the 11th, I went to Dr. Chohan's office to get my 2nd Sandostatin injection.  Since the embolization, I haven't had any flushing, so I'm really excited for that.  My biggest issue is that my heart hurts, and I take Pepcid twice a day.  Food still has little flavor for the most part, and the thought of some foods, drinks, smells and activities make me nauseous.  It's really weird.

My next procedure will be on Thursday, February 25, report time 7:00 a.m., procedure at 1:00.  Yeah, right!

Sunday, February 14, 2010

Today is World Marriage Day, so all married couples were called up to the altar at church to renew our vows.  Wow!  It was awesome and touching, and I had tears streaming down my cheeks the entire time.  "Til death do us part" has an entirely different meaning than it had 23 years ago!

Tuesday, February 16, 2010

Today is my 2-month milestone.

Tuesday, February 9, 2010

I survived the chemoembolization process, but it really got me down a lot worse than I had anticipated.  (I'll post those details later.)  I went home the day after the process and was miserable.  I felt like I had a sunburn, my mouth was grainy, I was nauseous, and food had absolutely no flavor.  Dr. Chohan called in a prescription for my grainy mouth, which has cleared up, and food is gradually beginning to have flavor, and if not flavor, then a sensation such as salty or sweet.

I had an appointment on Feb. 3 with Dr. Chohan, and learned I had a fever of 101.  She said it's the tumors dying in my liver, and that I'm responding exactly as I should.  Round 2 will be in early March, and the process will repeat itself.  I had planned to go back to school yesterday, but the fever is a daily pattern, beginning at 3:00 p.m. with chills which turn into a fever 3 hours later and it disappears by morning.  I haven't been in touch with Dr. Lee's office (the radiologist who performed the chemoembolization), so I think it's time to give him a call just to make sure everything is OK. 

I appreciate all the thoughts, prayers, phone calls and cards!  I am so blessed to be surrounded by so many caring friends and family and students and co-workers.  Please keep me in your prayers...my goal is to get up and around and back to school SOON so I can build up my strength and hopefully rebound a little better from the next procedure.

Chemoembolization Procedure

My procedure has been scheduled for Tuesday, January 26 at 12:30 p.m. at Baptist.  I'm ready to get the show on the road, and am planning to be back at school on the following Monday...I have to be...I don't have any lesson plans ready beyond Friday the 29th!! :)  (It's not procrastination...it's taking one step at a time.)

The Sandostatin is still working and the flushing has really decreased.  My stomach still hurts, but my main issue seems to be allergies right now.  Some of my students said I should sue my doctor for not having diagnosed this disease, since I've complained to her about my stomach problems for the past 5 years.  I stressed to them the importance of pushing a doctor to dig a little deeper instead of whipping out the prescription pad or blaming symptoms on stress.  I regret that I didn't demand an X-ray or CT scan, but I'm glad Dr. La ordered the ultrasound which found the mass on my left ovary.  I would not have left his office that day in November had he not done something.  The pain was excrutiating by then.

Thank you Alisha, Kyle/Shannon and Brooke for your very nice comments!  I'm new at this and can't figure out how to reply to you (if it's even possible), but please know that your kind words were very uplifting.

January 16, 2010 marked my first one-month milestone.

Radiologist Consulation: January 15, 2010

(My 54th birthday)  I had a consult appointment with my radiologist, Dr. Le, and Danny and I both were really impressed with him. He spent nearly an hour with us, very clearly explaining the chemoembolization procedure which I will soon undergo, and answered many questions we had about my carcinoid. He even showed us the film from my Octreotide scan, and it was interesting to see the tumors.

So...chemoembolization is a combination of delivering chemo to the tumors in my liver and then trapping it in the blood vessels which supply blood to the tumors. The chemo will be injected through my hepatic artery via a catheter (ouch!) as will the embolic agents, which block the chemo in the blood vessels. The procedure takes approximately 90 minutes and I'll be in recovery for 6-8 hours. I will spend at least one night in the hospital, and should be able to resume "normal" activities within a week.

Unlike our presumption that this would be a one-time procedure, chemoembolization is about a 6-week process. The first procedure will target one lobe of the liver, then 2 weeks later, the second lobe will be treated, then 2 weeks later, the entire liver will be treated. I'm certainly not looking forward to all the IV's and catheters, and if more tumors metastasize, the procedure will have to be repeated in 10-14 months.

Reactions to the chemo may include nausea and hair loss, but since the most of the chemo will be trapped in my liver, the reactions should be mild. I am confident they will be non-existent and my hair will stay intact.

First Sandostatin Injection: January 11, 2010

I got the first injection of Sandostatin LAR on January 11, after quite an ordeal at the pharmacy.  My friend, Karen, went to the doctor's office with me for moral support because I didn't really know what to expect.  The week prior, (nurse) Sandy said that small, sandy particles will be injected into my hip, which was a little unsettling.  The injection wasn't bad at all, and before I knew it, it was over.  The sandy particles are actually time-release particles that release throughout the month to keep the hormone symptoms under control. 

Five minutes after the injection, I felt a little dizzy and within 10 minutes, a little woozy, but I made it home in one piece.  That evening, I noticed a marked decrease in flushing and felt really good until I went to bed that evening.  I had a painful burning in my stomach similar to what I have felt in the past when taking antibiotics.  Fortunately, the feeling didn't last too long, and the next day I felt better than I had in quite some time.

The injection site has become increasingly tender throughout the week, but is not nearly as uncomfortable as the flushing incidents.  The injection will be alternated between hips each month, and I'm curious to see what happens to the tenderness as time progresses.  The next injection will be on February 11.

"Solutions are not the answer." - Richard Nixon (January 6, 2010)

Danny and Jessica picked me up at school for my oncologist appointment on Wednesday, January 6.  The day I had looked forward to had finally arrived, and I got scared.  Really scared.  Was I really ready for the final diagnosis?  After having spent a week wanting to find out, anxious to find out, the reality of it hit me like a ton of bricks.  And in we went...

The results of all the tests and scans showed that I do have carcinoid and carcinoid syndrome, and nothing was found other than the tumor in the mesentery and the lesions on my liver.  Even the mass on my ovary is unrelated, for which I am grateful, but the ovary will still need to be removed at a later date. 

The course of action for my treatment includes a monthly shot of Sandostatin LAR, 30 mg, (octreotide) for the rest of my life to counteract my flushing.  The shot costs $4,000, and according to Dr. Ch's insurance person, my portion each month will cost $650.  She gave me information about a foundation called the Health Well Foundation which provides assistance to persons who qualify financially.  One of the application requirements is a letter or form from the insurance company stating that the treatment is covered by my insurance.  In my quest to obtain the letter/form, I stumbled on a subsidiary company which provides specialty medicines at a reduced cost.  Sandostatin is covered under the prescription portion of my insurance, so I should be able to get it through the subsidiary company via mail order for $50 a month.  Much better than $650 a month!!  I'm so grateful to Amy at Health Choice for telling me about it!

Within the next 3 weeks I will have to be admitted to the hospital for a hepatic artery embolization, but Dr. Ch could not give us any details about the procedure...we will have a consultation with the radiologist within the week.  She does not feel I need to have the mesentery tumor de-bulked (reduced) at this time, but I'm not sure why.  I will address that later because I'm eating this elephant one bite at a time.

So, as bleak as the diagnosis is, I'm happy and relieved it's not any worse.  Danny and Jessica are, too.  I can't imagine what it must feel like to be 20 and find out your mom has cancer...

"What we see depends mainly on what we look for." John Lubbock (December 16-31, 2009)

The morning of Wednesday, December 16, I went to the hospital for an abdominal CT scan ordered by my ob/gyn as a pre-op procedure for the removal of my left ovary.  Surgery was scheduled for Monday, December 21.  Following the CT scan, I met with my ob/gyn for a pre-op consultation regarding the removal of my ovary, which has a 2-inch mass on it.  "Dr. La" (ob/gyn) gravely gave me the news that my lower torso ailments were no longer of a gynecological nature...in addition to the mass on my ovary, something is wrapped around my colon,I have multiple lesions on my liver and something in my small bowel.  He apologized for being blunt, but wanted me to know that things do not look good.  Stunned, I asked him what I should do, and he said I should see a surgeon.  He made a phone call to a general surgeon, "Dr. T", and asked her to see me immediately.  Fortunately, she was able to see me that morning.  Before I left his office, he asked me a key question...are my hot flashes accompanied by red flushing on my face?  They are.

I numbly sat in Dr. T's office, filling out the required paperwork, alone (I saw no need to have family come with me for a routine procedure) and crying, thinking that my parents didn't deserve to lose another child (my brother died at the age of 3 from a heart condition) and that I wasn't ready to die and leave my husband and daughter.  Two of Dr. La's staff members came to check on me and offer support, and later Dr. La came by as well.  I think they were as shocked as I.

I found Dr. T to be very caring and compassionate and she diagnosed me with carcinoid (a very slow-growing cancer, which originated in my mesentery) and carcinoid syndrome (the cancer metasized to my liver and produces hormones which cause extreme hot flashes with a red face, called "flushing").  Because the cancer is slow-growing, Dr. T told me to relax.  It had taken the carcinoid at least 5 years to get to its current state (that's how long I had complained to my primary care physician about having stomach problems).  She also said that I would have to go through a series of tests to confirm her diagnosis, and that surgery may or may not be an option for me because of the size and location of the tumor in my mesentery. 

Dr. T referred me to an oncologist who offices in OKC, but comes to Yukon every Wednesday afternoon.  As luck would have it, December 16 was on a Wednesday, so I met "Dr. Ch" later that afternoon.  It wouldn't have mattered...I would have driven to the ends of the earth for that appointment...

My husband, Danny, was in Ft. Worth that day, so I had to give him the good news (no surgery on Monday) and the bad news (I have cancer) over the phone.  I called my daughter, Jessica, to come home from college to take my parents to a doctor's appointment which was scheduled for the same time as my oncologist appointment.  When she got home and I told her about my disease, she took over my online research, and decided it might be a good idea for her to go with me to my appointment.  I made the difficult phone call to tell Mom that I wouldn't be able to take them to Dad's appointment because I had an appointment at the same time due to what the CT scan showed that morning.  "Is it cancer?" she asked and I dodged the question by telling her that it's possibly carcinoid.

Jessica and I met Dr. Ch at 4:30 that afternoon, and as her nurse took my vitals, she rambled on about this and that and how chemo is done right there in the office and so on.  Chemo.  This journey began with a mass on my left ovary and now I'm hearing about chemo??!!

Dr. Ch was very informative and told us the same information we had found in our research that afternoon.  She explained the tests and scans that would need to be done within the next few days to confirm the diagnosis.  Testing began December 20-21 with a 24-hour urine test called "5-HIAA".  The test checks for an excess amount of a substance made by the body when it breaks down serotonin.  An excess amount of that substance could mean that the body is processing extra serotonin, which is commonly excreted by carcinoid tumors.  The results of my 5-HIAA test indicated that my hydroxyindoleacetic acid level is high.

December 23, I went to Baptist Medical Center in OKC to have a liver biopsy.  Hating needles and having to have an IV, I became a pin cushion with bruises that lasted several days.   It seems you can tell by looking who will be gentle and who will be a vampire, and I definitely had 2 Victorias that day!!  Finally on the 7th or 8th try, the nurse was successful, and the biopsy went well, except, of course for the diagnosis of carcinoid tumor which had metastasized.   Synaptophysin and chromogranin both tested positive, and the measurement of chromogranin has been referred to as the "gold standard" for confirming carcinoid.  I'm not sure what synaptophysin is.

December 29-31, I had an octreotide scan to confirm and precisely locate the tumors.  The 29th involved an (IV) injection of octreotide, and the technologist decided it might be wise if I lay down for the injection (after my reaction to the news of an IV, along with the bruises on my arms and hands from the week before).  The technologist was very kind and distracted me with pleasant conversation, and before I knew it, he had injected the octreotide.  Octreotide attaches itself to carcinoid tumors, and during a scan 24 hours later,  the tumors lit up, allowing a diagnosis of their location(s).  In addition, octreotide is injected in patients with carcinoid syndrome to counteract the symptoms caused by the hormones produced by the tumors.  I noticed relief of my symptoms from the octreotide which had been injected for the scan, and that was nice.

So, with all the tests and scans out of the way, I spent the rest of Christmas break anticipating my next oncology appointment on Jan. 6, and hoping I wasn't full of tumors.  I wasn't being negative, just trying to be prepared.