13 May 2009

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 measures 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.


  1. You are very lucky and I am so very happy for you. Your misdiagnosis reads like my diagnosis only mine turned out different..
    May you live forever LOL :)

  2. I have been so wrapped up in my own injuries I have been a horrible friend... I am SO SO grateful you are alright...

    You my love have come to me at the right time, and I you I hope. This BUMP on my head has made me stop to smell the roses (when I remember LOL) and put things in perspective.

    I so love you my friend.

  3. mara - now that i know the entire story i understand all the joy you felt this week! i was on the edge of my seat reading this. having only met you on twitter a couple of weeks ago i had no idea that's why you were in NOLA. i'm not sure i could have been as brave as you've been thru this 3 1/2 year worry. i am so glad it turned out ok and you'll live to be an old woman like me....


  4. An inspiring post. Focus on, visualize, and expect the best possible outcomes in everything you do and experience... ;)
    Thanks for the great read!
    @Darren Sproat on Twitter

  5. My husband will be very interested in reading your post. He had melanoma a few years ago, and shortly thereafter began experiencing similar flushing symptoms. His docs also indicated that the flushing was consistent with carcinoid. After his bout with melanoma, he took the news very hard. Following some initial tests, they quickly ruled out carcinoid, attributing the flushing to stress. And so far there's been no reocurrence of the melanoma. He's been very fortunate. But having to use sunscreen on a daily basis is a constant reminder of how quickly his life was turned upside down. He still worries about strange spots/symptom, but not as much as he used to. Getting his life back on track has been a slow process, but he's determined to move on. I hope he lives to be an old man, just as you live to be an "old lady" ~ you both deserve it!

  6. Fantastic news! I didn't grasp all the techy stuff, but feel your joy. Here's to another 50 years of better health, and much happiness. Always remember the song- "All I Have". Love and hugs, Annalah.


  8. Thank God, thank you and live long and prosper!

    I just met you on Twitter in the last few weeks and you are an inspiration to me!

    Your energy, your spirit has touched me in ways I'm not yet able to process but I am so happy for you, your family and friends that you will be able to keep touching more of us with your story!

  9. The passion, the spirit and the determination to prove all wrong, but to know your own body, and what it was telling you, in order to defy all those people that did not know for sure, you are a strength to be wreckoned with and a love of live that will see many light years to come. God shined his light upon you and truly gave you peace!

  10. Mar Mar, you already know my feelings as I TWEETED them loudly and joyously on that great day. I just wanted to support your blog as well.
    I love you, and thank God we met.

  11. perspective is everything. you came into my life just before the accident, and must have sensed I needed you. And WANTED you in my life. I feel as if we are family, even though we share nothing but a few messages a day.


    and happy birthday!

  12. Wow how wonderful, I am so happy for you! I just met you today on Facebook. Your story is so interesting thank you for sharing this with everyone. I will look up you friends. Take care and have a wonderful life! Jaime Roberts