Trogdor, sliced diced and spiced!

At long last, I figured out how to get access to Colleen's Blog to post an update. The moral is,don't ever rely on a heavily medicated woman to give correct information.
In her previous post she gave all of the recent details about her treatment so I'll pick up from last Thursday.
I should preface this with the fact that during the past week we have had record low temps in the 20's and the piped in Colleen's house froze, really throwing off her preparation plans. Needless to say, Her Mommy will have some house cleaning and laundry to keep her busy while she is here helping out after the surgery.
Thursday I picked her up from work and we went to OHSU for her pre op appointments. They asked the same million questions that they do everything and checked her over to make sure she was able to go through with the surgery. Dr. Pommier came in and went over with us what would happen the next day.
Friday Morning Colleen and I were at the hospital bright and early at 9:00 to play the hurry up and wait game. By 10:30 Colleen was ready for surgery. An anesthesiologist came in to tell her what they would be doing and told her that if she would like, they would put in an epidural after the surgery for pain abatement that could stay in for up to 7 days. As I was hyperventilating with happiness for her she turned her head and asked me if I thought she should get it. "YES!" I hollered, "Score to be you!"
She went into surgery at 1:37 in the afternoon, by the way, winning for me two chocolate eclair from the diabetic bakery because Colleen ran a contest with the women from our "Girl's Night" as to the time the surgery would be scheduled and the time it actually happened. There should have been an additional category for how long she was on the table because it ended up being 7-8 hours!
The OR nurse called me every two hours saying, she is doing well, but it will be a while yet. Finally at 8:45 I got to talk to the Doc. He said that he had been able to totally clean off her liver, removing about 30 "spots" ranging in size from pea to marble. It will regenerate very quickly. He then went looking for the primary in her small intestines. This takes hours because he has to manually feel along the whole length looking the small pea sized tumor. He finally found it in the last few inches. On thing that the primary carcinoid does is release the hormone serotonin which makes the intestine walls go from feeling like soft cloth to shoe leather, it then contracts and shrinks and tangles. He had to take this whole small tangled mass out. In order to get a good vascular connection for the resection he took out about 3 feet of intestine. He was very happy with the results and said that Trogdor has been vanquished! (OK, no, he didn't say that, but wouldn't it have been cool if he had?)
I finally got in to see Colleen at about 11:00 that evening. Because of the epidural she had no pain from the incision, but the chest muscles below her shoulders were very sore because her arms had been strapped down for 8+ hours straight out to the sides. She slept fitfully that night and I sat and watch her to make sure she remembered to breath, she did very well in the remembering to breath department by the way.
Over the past few days she has very slowly went from sips of water, to drinking all the water she wanted, to eating "full meals" of juice, milk, liquified veggy soup and chocolate ice cream.
Today, Wednesday, her epidural came out, which means, shower, glorious shower. Also, her digestive system is up and running again.
She appreciates all of the good wishes and prayers from everyone and hopefully will be the next person to give an update!
Her "Favorite Sissie" Lori (OK, maybe favorite this week, Kathy after all has given her many wonderful nieces and nephews, who she adores.)

I ate his liver with some fava beans and a nice chianti. -hannibal lecter

Well, its time to update my blog. This fall, I had some follow-up scans and tests to see how Trogdor was doing. Since last February '09, I've been taking Octreotide shots, which are a biological shot intended to keep my carcinoid tumor from producing the hormone serotonin. While the cancer isn't running rampant in my luscious body, my symptoms haven't really improved. So....

Dr. Patil, my oncologist, referred me to OHSU (Oregon Health and Sciences University) to the care of carcinoid specialist, Dr. Pommier. Where all my health specialists to date have been cancer generalists and surgeons, Dr. Pommier has made carcinoid cancer his speciality. We like that. After suffering the political and insurance wrangling necessary to get approval to see Dr. Pommier, I was finally approved and went in for my consult this last week. The next time I go in to his office, it will be for my pre-op appointment for surgery, which is scheduled for December 11, 09.

There has been a major change to my treatment plan. It turns out that carcinoid cancer is a much different animal than regular cancer. If there is such a thing. What we thought was my primary tumor in the mesentary, was actually just a lymphatic carcinoid tumor, and not the primary at all.

A primary carcinoid tumor is no larger than a pea, is usually missed from examination by even experienced oncology specialists, and in my case is going to actually be on in small intestine. Additionally, the mortality risks for someone in my position are from GI obstruction and cancer metastized to the liver. I have several small carcinoid lesions in my liver, which we've known about since last year.

Additionally to the additionally is that Dr. Pommier stated that I am in the top 10% of most positive results with having the primary resected from my small intestine and having the lesions removed from my liver. By the time I return to work, my liver will have regrown what was removed and I will truly be in maintainence mode with the shots. With no more primary to pose a continued threat to my system, the rest is easy. He has found the primary carcinoid tumor in 100% of the patients he's done surgery on.

The really REALLY great news is that we are going to try to rent one of those auto-granny-launching recliners, so that I will actually be able to get up as needed. The really really BAD news is that I will be out for 6 weeks. As I learned the last time, this is not a vacation. As for work, will have laptop - so will travel. :)

New tests

It's been a while since I last posted. In short, I've been getting it in the shorts, one shot at a time. It's time for me to have my one-year scans to see how Trogdor is fairing, or not fairing. On Wednesday, I'll get a CAT scan at Newberg Providence and on Thursday and Friday, a repeat of the Octreotide scan (remember Brent from last year?) This year, it will be at St. Vincent, so no Brent.

Trogdor was first spotted on last year's CAT scan. Last year's octreotide scan didn't light up like the Christmas tree they expected. I expect to see something similar this year (or not see). Based on these results, they may or may not schedule a subsequent PET scan. We'll see.

I have no ill-effects from my shots, so that is great. My arm continues to heal. Otherwise, I'm doing well. I'm actually very boring, which is a good thing. More later.

I just took my first road trip in over two years (longer than 60 minutes) and my arm wasn't killing me. That's a milestone! I had a great visit in Boise, and this was my first visit there in six years (first since I moved to Portland). I got to see relatives and friends and didn't get arrested, nor tattoo'd. I went to the BSU/UO slaughter last Thursday with my niece and nephew, Lena and Kevin. We had a great time. Lena and I were going to go with body paint on our upper torso's but didn't want to detract from television coverage of the fight, so we sacrificed.

During our visit this past weekend, we talked about a lot of important life things. Here's an example: Would you rather have a 32 degree F vagina or 150 degree F nipples? Hands down, everyone agreed that it was better to have a 32 degree F vagina. More later!

The Taming of Trogdor

I'm all healed up from the surgery, with only the holes left that I was born with. I've been back to work successfully since January 2. Yesterday, I received my second monthly butt shot, and it was good.

I began to see improvements in my symptoms after the first one a month ago, and when Dr. Patil asked about it, I told "Yes, I am seeing improvement". Then he said "Reeaaalllyyyy????" And I said "Yes, Really!" And we both smiled. Then he wanted to hear all the details, but since they involve bowel movements, I won't go there. Unless you really want me to.

I two weeks ago, I did a 24 hour urine catch for the test they use to verify carcinoid, and it actually came out negative. Not because I have no more carcinoid, but because Dr. Patil says that I'm very atypical. Just one more way to beat my sister Lori out of the strange and unusual medical wonders! The only actual proof we have that this is what it is, came from the surgery, where Dr. Wolf was able to get samples.

The other atypical things are that the Octreotide scan I had last fall, which was supposed to light up like a Christmas tree from the carcinoid markers, didn't. It was faint at best. My elbow, where it was originally discovered, shouldn't have been a metastatic location. A person's extremeties are too cold for metastases to occur. It usually takes place up in the shoulder.

HOWEVER, it appears that Trogdor is finally behaving itself. And guess what? I get to go to work today! Isn't life grand!

Colleen's Soap Box

I know that my niece, Roxanne, would rather I use this energy elsewhere, but I must vent and spout for a few moments.

Late on Christmas evening, my youngest niece, Roxanne, and her husband, Noah, were walking along Wynooski Road from a friend's house to their house. Noah was hit from behind by an unknown driver in a truck, who left the scene without stopping. This story has appeared in many newspapers and on TV, requesting information on the driver.

http://www.katu.com/news/local/36833779.html

My soap box is that there are two types of people in our world. Those who stop and those who don't. I have believed for years that the person who doesn't stop is void of any quality of character, and is a coward at heart. The person that stops in such an accident isn't necessarily more courageous; but I can say that to stop is what a normal person would do, regardless of the outcome.

If they are ever able to find this person, and charge him or her, I will be at the trial, in front, with a set scowl on my face. I have no compassion, even though I know that they will suffer every day. They would suffer, even if they had stopped to help. That's just how it is. There is every possibility that this person has no idea that he hit Noah. In ignorance, there can be found understanding and compassion. If he had stopped, I would have had compassion and understanding for him. Accidents happen, and the road conditions that snowy-icy night were horrid. More probable is that he or she was intoxicated and left the scene to keep out of jail.

Noah is slowly getting better, but is still in the Legacy Emmanuel Hospital ICU. He has been unconscious since the accident, but has been showing small signs of improvement. Noah is a young scrapping lad, scrapping being the operative term. I know that he won't be a victim in this, and will be fighting to get well. He's a fighter, and I'm grateful for that.

My niece, Roxanne, has really shown her mettle as a wife. I'm so proud of her. She's way too young to have this put on her shoulders, but she's born it resolutely, diving into challenges with grace and a thousand more times strenth than one might think possible. She's such a tiny thing, but big voices come from little mouths. Have you ever seen the bumper sticker, "little girls drive big pick-ups"? In Idaho, where I'm from, they really do. And so she goes, every day in their full-sized pickup, to be with her husband and attend to his needs.

Their friends and family have gathered around wonderfully. I know that Noah is a very private person and probably wouldn't like all the attention he's getting. My prayers for Noah and Roxanne are that, in this journey, they find the patience to put up with everyone's well-meaning attention and actions. In my own journey, I've had to open up about a lot of things, when I would much rather had maintained my personal space and privacy. I knew intellectually how important it was for my friends and family to have the access I've been able to afford them. Charity is a two-way street. It'll be uncomfortable at first, but as he gets well, people will naturally give them more space. And one day, Noah will be as boring as I am becoming. :)

I know that Noah will get well. I know that Roxanne will reach twice her actually height, in character and strength. I pray for them and their families and friends. I hope that the driver finds his character and turns himself in.

Back to work! Early mornings, YUCK!

I returned to work full-time this past Monday. I've done ok, but right now have a massive belly ache because I think I over did it today. But I got a lot done. :)

My doctor's office is working with my insurance company to get me set up to take the Sandostatin shots. The protocol is that I will give myself shots twice a day for two weeks. I had to practice last Friday on myself. It wasn't bad, especially since I did it in my belly and it's in large part, numb from the surgery.

After the two weeks are up, and if I'm showing improvement on my symptoms, I'll start getting the once-monthly shots from the doctor's office. I'm glad to get moving on this.

I still have two open wounds along the suture line. One is nearly healed up, while the other is still very deep, but narrow. I have an appointment with my surgeon at the end of the month, but I'll be greatly improved by then. No more infection though. It's a healthy, although holely belly.

I have been put into contact with a local carcinoid support group and am looking forward to participating with others like myself. Speaking of which, it was just in the news about Steve Jobs, CEO of Apple, having a hormal problem that he was going to take care of with diet, and that struck a chord. As I read down through the article, it turns out that he also has a neuroendocrine tumor (NET), which is what my carcinoid is. His is just a different flavor than mine, an islet cell pancreatic NET. I couldn't say what his prognosis is, since he has said virtually nothing more than this. That they aren't jumping on surgical treatments or chemical/radiologic treatments may be a good sign that his isn't a particularly bad condition.

In my case, the "watch and wait" approach was as valid as trying surgical removal, which didn't work out for me. Now I'm in that "watch and wait" with the Sandostatin hormonal shots. These are intended to stop the tumors from producing the serotonin hormone, which causes mischief inside my body.