Category Archives: Carcinoid

I’m the Boss of Me!

Where do I start? I suppose, I’ll begin with the good news, then backtrack from there. I saw the
leading Neuroendicrine Specialists at Oschner in Kenner, LA yesterday, and they told me the oncologist was wrong. I don’t have Carcinoid cancer. The roar of “hurrah” and sighs of relief were
heard throughout the world as this news was delivered. But, how did I get here? How did the doctors get it so wrong?

In late 2005 I went to the doctor for symptoms that I don’t even remember. Whatever initially sent me to her office was quickly shuffled to the back burner as I was told I had Carcinoid Syndrome, and needed to be seen by an oncologist right away. This was two days before Thanksgiving. My daughter, Kate and her husband were coming to Fort Collins, CO for the first time since we had bought a home there, and I didn’t want this news to spoil their visit. Anytime we hear CANCER, images of death are not far behind. I made the decision to tell Kate because I had always resented being left in the dark ‘for my own good’ by parents, grandparents, etc. I feel it is up to each of us, as adults, to make up our own minds how we choose to process information. Kate was 27 years old a the time – certainly old enough to know.

Stewart and discussed it, and decided to have all the testing done as soon as possible. Test after
grueling test showed inconclusive results. I was exhausted, sore and disheartened after three months of non-stop poking and prodding. Finally, I told the doctors if it was so difficult to find, then obviously it wasn’t going to kill me any time soon. In the meantime, I was getting back to the business of living. I put the cancer diagnosis in a back corner of my mind and got back to my life. The Big C was still there, but it was no longer running the show. It stayed there until October 2008, when one of my doctors refused to treat me for something routine until I returned to the oncologist for a follow up. Reluctantly, and still nursing wounds from the first round of tests, I returned for my follow up. The diagnosis was confirmed with no specific point of origin – no change from 2005. The roller coaster ride recommenced. Do I? Don’t I? Where is it? How bad? Am I dying any time soon?

The primary difference this time was I had symptoms. People are always telling me how healthy I look, but one of the first symptoms of carcinoid is flushing. I also was experiencing other symptoms that when put together didn’t look good. In my heart of hearts I did not accept the possibility that I was actually sick. It felt surreal, like the doctors were talking about someone else. This time, they wanted to start me on the drug that I would then have to be on the rest of my life. It is an injectible, and has all sorts of miserable side effects. As much as I wanted to feel better,I felt like they were telling me I needed to use an elephant gun to kill a flea. I WASN’T SICK!

After much research on my behalf by Stewart and my dear friend, Nancy McClellan, DC, we discovered the best doctors around are in Kenner, LA at Oschner. These tireless research doctors moved from LSUHS after Katrina so they could continue their groundbreaking work with neuroendicrine tumours. Dr. Eugene Wolverting in particular makes himself available 24/7 to answer questions posed by the more than 4000 participants on the ACOR email list. He even goes so far as to list his cell phone number on his email signature. When was the last time your doctor gave you his cell number?! My compromise with Stewart and the doctors was I would begin treatment IF the doctors at Oschner confirmed the diagnosis and recommended I begin Sandostatine. In my mind, there was no doubt they would tell me this was all one big mistake. That I was just fine. So, I scheduled my appointment, made travel arrangements, and started the retesting process. 12 May was the appointed day.

The tests required for carcinoid are miserable, and have a set of challenges many are simply not up to at the time of diagnosis because they are too sick. For example, it took me over five weeks to get the lab that Oschner required me to use, to order the tubes for the blood tests. Next, the diet required for accurate results is difficult when I’m in my own kitchen. With my present living
situation, trying to collect a 24 hour urine, and keep it cold is challenging. We have no bathroom,
and our refrigerator is 3 cu ft. Have you seen the size of one of those collection containers? The
lab used the wrong tubes for blood, put wrong preservative in the collection bottle, the list goes on and on. this time I was determined -every test was going to be done perfectly, leaving no room for doubt – one way or the other I was going to know.

We arrived in New Orleans Wednesday 6 May. I was scheduled for octreotide and CT scans Thursday and Friday. The worst part of these scans for me is not the nuclear med injections, but lying still on the tables. I’m grumpy on a good day, but these tests back to back made me downright ballistic. Fortunately, Stewart understood this and kept busy. We ended up going out for some good food and good music. There was nothing we could do before Tuesday when I saw the docs anyway. May as well have some fun in NOLA, and it’s crawfish season! But, I’ll get back to the travel updates after this. For this blog, I’m concentrating on health. Monday over dinner, I put Stewart on the spot, and made him tell me what he thought the doctors were going to say. He said he thought it was a good chance I had it. I told him he was wrong, that it was all a mistake, and that I knew this down to my bones.

Tuesday, we got up and Stewart left a large perimeter around me. Experience has taught him I’m never happy about going to a doctor. This time was different. I had put my future into the hands of these doctors. Whatever they said would dictate the future course of my life. I was not leaving their offices without a definitive diagnosis. No more wiggle room. We arrived, and the first thing I learned was that all my test results had not arrived. furiously, I began calling the labs while the office assistant made calls to various agencies to find out what had happened. there was no more room for errors. I simply could not leave there without knowing. My heart sank to my feet. 15 minutes until I saw the doctors. With much arm twisting and the universe on my side, we were able to get verbal results with two minutes to go. A collective sigh of relief went through the waiting room.

When I was taken to the back, after being weighed (with my back to the scale) and height measured, I was taken into a room, and the nurse took my blood pressure. At this point, you would have expected my heart to be racing, and my pressure to be through the roof. Instead, I was calm and collected knowing I would get good news. If anything, my pressure should have been up in anticipation of good news. It was 99 over 63, with a resting pulse of 73. Not exactly stroke numbers! I was in the zone.

When the doctor asked me a slew of questions about my symptoms and other physical challenges I have, I was certain he was looking for some explanation for my diagnosis. I stopped him, and said to just give me a yes or no. No more grey areas. He said “No, you will live to be an old lady”. I jumped up, pumped my fist in the air and said, “I told you, WOOT!” Stewart was grinning ear to ear, and yelled, “Bitchin’!”. The doctor started explaining the reasons for the false diagnosis, but as far as I was concerned he may as well have been speaking in tongues. All that mattered was I was going to live, and of course, that I’d been right.

So now I need to address how they got it wrong, and how I feel about it. Let’s look at the first and
easier of the two questions, how they got it wrong. As I’ve written about before, carcinoid is a rare and often baffling disease. frequently, it is not found until an autopsy is done. It is slow growing, and relies upon markers to diagnose. The markers are 5HIAA and Chromogranin A. 5HIAA meas
ures the seretonin level, which is elevated in carcinoid patients. The CGA is secreted in carcinoid tumours. My results had been consistently high, but previously, the tests had not been conducted in as rigorous a manner, nor through the lab recommended by Oschner. Also, the dietary and medication restrictions required prior to testing for a three day period had been challenging for me because I need to take the drugs for other reasons. My oncologist, while a wonderful doctor, is not an expert in carcinoid, so didn’t have me restrict all foods and meds as required. The scans were inconclusive, but did not rule out anything, so couldn’t be taken as definitive.

Now, on to the more complex question. How I feel about this. Since I never truly accepted that I was dying this was not nearly as dramatic for me as it would have been if, say, I’d been rewriting my will and planning my funeral. On the other hand, I have given a corner of my mind over to this disease for three and a half years. I know that when I started gaining weight there was a part of me that didn’t care because I figured I’d need the weight when I started dwindling away, and what’s the difference what I eat if I’m dying anyway? May as well die fat as skinny!

I have had numerous medical dramas in my life. Only 2% survive the spinal meningitis I had in 1996. The Hepatitis C I got from a blood transfusion in 1981 left me with permanent damage to my liver. The list goes on and on. Each time I have come away a little more damaged physically, but stronger in spirit. This time is no exception. the gift of life has been tied with a bow and shiny paper, and handed back to me. As I relish this present I cannot look upon it with anything but hope. Hope for the future, and the knowledge that I can use this experience to help others on their journeys through sickness and wellness. I am truly grateful for this.

Way to Go, Uncle Rex

When last I updated this little monologue about our odyssey through the US, I put out a request for places to go and things to do next. Stewart’s uncle, Rex Amack, came through with flying colors. In fact, he so enthusiastically stood up to the challenge that I am dedicating this post to him. So, cheers, Uncle Rex!

As I wrote about previously, we were debating the West Coast of Florida or Hilton Head. We intend to follow, verbatim, the trip suggested by Uncle Rex (UR). We left the Keys and headed across the Tamiami trail through the Everglades to Naples, Sanibel and Pine Island. Next, we stopped in St. Petersburg. We’ll be in St. Petes for awhile since it is a great central location for many interesting and beautiful places. Now, that’s what I call participation! We will pick back up the rest of UR’s itinerary after NOLA.

Speaking of NOLA. The type of cancer I have is called carcinoid. I have Carcinoid Syndrome, which means that it is throughout my body and causes strange symptoms like flushing and wheezing. I plan on living a very, very long time with this disease, but it does need to be tended. The leading Neuroendicrine tumour specialists in the world are in Kenner, LA, a suburb of New Orleans, at the Oschner Clinic. The doctors there have been kind enough to agree to see me. I have been having a lot of bloodwork done along the way, and let me tell you, there are all sorts of obstacles the medical community puts in the way of us wanderers, but that’s another story. My scan dates are 7-8 May, and my consultation is 12 May. I will let y’all know how it goes. Obviously, what they tell me will have some influence on our trip. Not much, but some. Please take the time to learn about this often misdiagnosed cancer. It is often misdagnosed. In fact, the symbol for carcinoid is the zebra. “Just because you hear hoof beats doesn’t mean it’s a horse. It may be a zebra”.

Stewart and I are frequently asked about the logistics of an adventure such as ours. How we get our mail? How do we decide where to go? Don’t we miss home? These are just a few of the many questions we are asked all the time. I’m going to devote a few inches of column space to sharing some of the creative ways we are traveling unencumbered.

Our mail is sent to us by our wonderful property manager, Alex Lay. He fields the calls for the water heater, the trees needing trimming, he deals with all the day to day issues that keep our California home running and us worry free. Our mail is sent to his post office box, and he bundles it and posts it to us wherever we are. For those of you who are interested, the US Post Office does provide a service for a small fee that does basically the same thing. The big difference the post office doesn’t look through your mail for junk and items that are better handled by them. Thank you, Alex!

We have two iPhones, and as of a few days ago, a second laptop. The variety of applications available – mostly for free – on iPhone is staggering. We use no fewer than 50 apps on almost a daily basis. Here is a brief rundown of a few:

~The Weather Channel – we use this to see whether the weather suits us somewhere before heading out.
~Maps – The GPS is remarkably accurate. We have had a few funny instances for example, when it directed us into a cemetery. Considering we were in Florida, aka Heaven’s Waiting Room, we found that appropriate.
~Pandora – for those times when there is no local stations other than Rush-types and Christian music. Before anyone blasts me, there is nothing wrong with it. It’s just not our cup of tea. (did I get out of that one unscathed?)
~Shazam – for those times when we know the song, but can’t think of the artist to save our lives. this app actually “listens” to the song and give us the artist and version within seconds. It feels like magic.
~ Notepad – for keeping track of what we do, where we go, what we eat, hear, etc. Much more environmentally friendly than paper, and easier to keep up with since my phone is attached by umbilicus.
~Social Media – I’m just going to bundle Facebook, LinkedIn, Palringo, Skype and Twitter all together here. Tweetie was the one and only app I ever paid for, and at $2.99 it was a steal!
~Have2P – Yes, I know it’s a funny name, but there is nothing funny when we’re in the middle of nowhere and nature comes calling. You gals know what I mean… I see you smiling.
~Public Radio – I can look up any NPR station that broadcasts and listen to my favorite programs. Since we tend to sleep most of the day and stay up all night, I have found a great station in Hawaii that allows me to listen to Morning edition late into the afternoon.
~Offleash – We’re traveling with two very active Wheaten terriers. They are great, but sometimes their energy needs to be released in a major way. this application uses GPS to find us all the dog parks in the area. We have used it countless times – even submitted one that was missing from their list – pay it forward.
~ Stanza – Through Project Gutenberg and others, there are literally thousands of books available free to be read by anyone with access to a computer. I downloaded, for example, Curious Case of Benjamin Buttons a few days before we went to see the movie so that I would have read it in its original before seeing the Hollywood interpretation. Though Brad Pitt was great, F.Scott Fitzgerald was better.
~ AroundMe – I needed a pharmacy today. I tapped the category, and in seconds a list of pharmacies complete with directions appeared. Granted, I still got lost since I failed to look, but it was there for me.
~ TakeMetoMyCar – We were in Key West, and by the time the day was through we had no idea where we had parked. Fortunately, I’d pressed the screen before we walked away that morning, and it took us right to the car. I know it’s a little screen on the iPhone, but when I was stuck in Peregrine without any wifi or TV signal, I watched CSI and How I Met Your Mother in a YouTube-like format. Very cool.
~i.TV – Speaking of TV, wherever we go this app uses GPS to determine our location, and then gives us the local TV and movie listings.
~Music Recording – 4Trak and GigBaby allow Stewart to record four tracks of music so he can play lead, rhythm, bass and slide resulting in beautiful music.
It’s his own mobile recording studio.
~YouTube – We use this primarily for comedy. Every once in a while A Susan Boyle singing I Dreamed a Dream or Adam Lambert singing Mad world comes along, and instead of being out of the loop, we get to indulge over and over until the tears stop flowing. Speaking of tears flowing, there was one particular Youtube video, Ed Needs Bob that led us to collaborate with Jay Koch in developing a new acronym to describe the sort of laughter that doubles you over and makes tears stream down your face. ENB is when ROFLMAO just doesn’t do justice to our fun.

There are many, many more, but you get the general idea. On our (my!) laptop we have a TV tuner card with fits right into a slot in the side. If we happen to have access to cable, it just hooks right up to the card. If we don’t, I know the name of a good electrician (Stewart) who is quite skilled at working the antenna to get us a picture. When all that fails, Pat Bell, also known as @MickeyMouse1105, tweets me what’s happening on American Idol.

The final question regarding missing home is a bit more complex. We have three daughters and two grandsons who we miss desperately. But the reality at their stages of life (ages 29, 24 and 20) they will have about 30 minutes a week for their parents. Should we spend our time stationary in hopes they throw us a bone? We feel that home is wherever we are together. Peregrine is home, but we are each other’s “home”. We have gotten Skype, and have asked the girls to do the same so we can see them as well as hear their voices. If anyone wishes to reach us, our user name is ravenhouse18. Just give us a warning shout so I can put on my Chapstick.

We did a lot of going back to the same places we had already enjoyed in our final weeks in the Keys. Stewart and I cooked and brought in food while I was recovering, so there isn’t a lot to report other than the remarkable care he gave me, as always. There is one place in particular that is a standout, though. Hog Heaven. The food was excellent, and the live music was a real treat. They played reggae with various guest artists joining them for different numbers. the best part was they serve a full menu until 3:00 AM. As many of you know, we just get started around midnight!

Too much fun landed me in back pain hell. Fortunately, I had my iPhone to keep me company. I have gotten really fast on that thing. In fact, I actually prefer it to my laptop. It is fun to watch the auto-correct transform my thoughts into something completely different. Steve Jobs has a really good sense of humour. I am happy to report my back is healing nicely, and I’m back in the saddle, so to speak.

I would like to share the final day I had before being down for the count. Early Thursday morning – ok, it was around 10:00 am – we headed for Miami where we met Vopni (@talkative_mime) for brunch at a little place called Wagon Wheel West. great breakfast. In my opinion, breakfast is the meal most often ruined. The owner, Wally, was so excited when we told him we’d mention him in our blog, he brought T-shirts for the table!

Straight from WWW, we headed over to Whisk Gourmet. Unfortunately, we weren’t hungry, but we still managed to share a piece of the most heavenly chocolate cake I think I’ve had since my mom’s. We actually fought over the last bite! It was so nice getting to see Ryan and Alyson, my cousins. I hadn’t seen Ryan since he was about 14. Now, he’s all grown up and working for Amex. Handsome, too!

That night, Stewart and I went to see Les Miserables at the Actor’s Playhouse in Coral Gables. The playhouse is owned by Larry and Barbara Stein. Coincidentally, when I broke a tooth in March, Larry fixed it for me. He’s both a great patron of the arts and dentist. What a combination. The company included quite a few from the original Broadway production. When Valjean, played by David Michael Felty sang “Bring Him Home” there wasn’t a dry eye in the house. We were, of course, there in our flipflops, but who cares. Magic! Incidentally, another one of my cousins, Staci Schwartz, an accomplished actor, was a part of the Actor’s Playhouse until quite recently when she relocated to our nations capital.

Down in the Keys for the most part our choices for shopping are an outlet store or two, Wal-Mart (where I refuse to shop until they pay their workers a living wage), and Walgreen’s. Spending the day in Miami gave us the opportunity to stock up on much needed supplies. We (Stewart!) had broken a lamp at the home we had rented, and buying a new one seemed a better solution than reporting it.

I am at a stand still.There is so much more to write, but if I wait until I have it all written, I’ll never get this posted! So, I’m going to post this, and then get back to the more interesting aspects of our journey. Please forgive me for not being very amusing this go. Too much to say, too little wifi!