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!