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!