Now that all the excitement of disease, death, and urine samples is behind us, it's time to get back to the real purpose of this blog – FUN! We have a lot of catching up to do, so we had better get started.
As I mentioned previously, we left the Keys, and headed over to the Florida West Coast. Our first stop after driving through the much lauded and equally overrated Everglades was St. James City on Pine Island. You may ask why we stopped in this particular place when Sanibel Island was our destination, and all I can tell you is I let Stewart make the arrangements. Note to self: Google all reservations made by Stewart before departure. The Island was in a beautiful location right on the Gulf of Mexico, and the Intracoastal Waterway, however the median age was 63.2. The only thing that come to mind is they averaged in the ages of great-grandchildren who were visiting at the time the census was conducted. Even the biker bar had a handrail in the restroom with a raised seat.
Besides the mosquito and noseeum infestation, we were able to manage a bit of fun. One of the restaurants we returned to a couple of times was The Waterfront Restaurant and Marina. The food was delicious and plentiful. The fresh clam chowder was particularly good, as was the broiled seafood gumbo. The first time we at there, we sat in the bar as it was packed. Beer was 25 ¢ and served in a mason jar. As you can imagine, hot sun mixed with cheap beer made for an interesting group of diners and drinkers. A few locals entertained us with stories, some of which are just not appropriate to share on a PG-13 blog. The many stickers that graced the wall behind the bar were also good for a few laughs.
The biggest drawback to St. James City being Heaven's Waiting Room was that Stewart and I are night people. We first began to think about food when the street lights were being extinguished for the night. Fortunately we were able to find one of the best meals we'd had to date at The Lazy Flamingo. Though they are known for their Dead Parrot Wings, we shared an appetizer of conch (pronounced conk by the locals) fritters that were moist and delicious, followed by grilled grouper sandwich for me, and a grilled fish platter for Stewart. We were stuffed to the gills, so to speak, but our very persuasive waitperson convinced us our meal would not be complete without a slice triple layer chocolate mousse layer cake. We didn't want to let her down, so we dug in. When the bill came, the waitperson had deducted 10% from the bill because she liked us – not something that happens every day. (Note: I did not tell her I wrote a travel blog, which made it even sweeter!)
The third and final noteworthy place we visited that was Woody's Waterside. Now, before I go any further, I think it is important that you know Woody is a dog. More specifically, a hound dog. His picture graces the wall behind the bar asleep with his tongue akimbo and paws wrapped around a can of beer. After eating there, I will be adding restaurants named for pets to my list of places to skip. In retrospect it seemed like a good idea as the parking lot was full, and compared to the geriatric biker bar, it was fabulous.
If you happened to read my previous post, you know about my experience with the less than competent folks at Quest Labs. Needless to say, I was extremely happy to see Pine Island in the rear view mirror. Our next stop was beautiful St. Petersburg/Madeira Beach. This was 180ยบ from Pine Island. Though we had an inauspicious approach with GPS directing us into a cemetery, we ended up in this beautiful lush place on the bayou where Tampa Bay empties on its journey back from the Gulf of Mexico. Our campsite was surrounded by old growth trees and flowering bougainvillea bushes with the view of the water right across the path. Our three days there stretched into almost two weeks as we were reluctant to give up our corner of paradise. Then, the heat and humidity arrived. Florida in late April/early May is just no fun. There were so many wonderful restaurants and places we went during our stay in Madeira Beach that I couldn't begin to mention them all. Instead, I will focus on a few standouts.
This was the first real sense we had of the West Coast versus the East Coast of Florida. There was decidedly a different feel here, more Southern than Eastern. The pace was slower, the locals and tourists younger and friendlier. We ate at a lovely place along the boardwalk in Clearwater called Britts' Laguna Grill. We started out with a dozen raw oysters. They were so large and plump they actually took two bites a piece. Fortunately, we had ordered a couple of caramelized salmon salads. The dressing was made with fresh ginger, and was outstanding. The couple at the next table had smuggled in their dog. It was the cutest little thing tucked inside the man's shirt. I tried to ask them about the dog, but they spoke no English, and I spoke no Portuguese.
Our Fifth wedding anniversary was during our stay in Madeira Beach, and we had a full day. First thing we did was meet briefly with Tom Morris, whom I had 'met' on Twitter. There is always a chance when meeting someone who is only a virtual friend, that they will not be who they seem in cyberspace. In this case, Tom was the real deal. A true gentleman, kind and generous of spirit. I have a pretty finely tuned BS detector, as does Stewart, and no bells went off. Tom was in St. Pete's giving a speech, and coincidentally, we discovered we were in the same town. This is known in tweetspeak as a tweetup. After his speech, Tom stayed to be interviewed for an Internet TV show. The producer and a freelance journalist were also Twitter folks, ProducerGirl and McMedia, aka, Sandi McKenna. More about Twitter later.
After taking a walk along the beach, Stewart and I decided to look for a place to eat. We stopped in at Crabby Bill's. It's been around for over 25 years, and from what we can figure out, Bill is crabby because he wants some good food and good service! There were very few people up on the roof deck overlooking the water, so we thought there would be no problem having a leisurely meal. I'm just going to leave it that if I don't have anything good to say, I'm not going to say anything at all.
Later that night, after spending some time with Jeffrey and Emma, Stewart and I headed into St. Petersburg proper to see “I Love You, Man”. It was very funny example of a modern day bromance. One of the bonuses of traveling is seeing concerts and films in strange venues. The audiences are different, the feel of the place is foreign – even if it's the same film showing in your own neighborhood.
There is this little gadget I have on my laptop that allows me to enter the city we're currently in, and it pops up all the music in the area. While in St. Petersburg, I found out SEAL was going to be performing the following night at the Mahaffey Theater. We immediately bought tickets assuming we'd be in nosebleed seats. Instead, to our delight, we were able to get box seats right next to the stage. Apparently, they save these until the last minute in case some big shots decide to attend (the venue saves them, not Seal). We have both been to hundreds of concerts, and can say without a doubt, that we have never witnessed as masterful a performance as this. The energy in the room was electric. Seal's connection to the crowd was almost intimate. The man is a masterful entertainer, a humble man who is grateful for his life, and a gifted singer. He had us in the palm of his hand from the first note. I've thought long and hard how I was going to explain this experience in words, and frankly, I'm stumped. It was just too divine even try.
One of the most unexpected treats we've had so far on this journey was discovering my dear old friend, Marta Rose, is VP Communications for Panama City Beach. Marta and I had been close friends years ago when we both lived in Santa Monica, CA, but had lost contact with each other until quite recently. One thing I always loved about Marta was her ability to connect with people and places in a very special way. She was able to show us around, and provide some local colour. We ate at the Boatyard, which was delicious, and Guy Harvey’s Island Grill, which was horrible. It was a shame, really, because it is perfectly situated at the end of Pier Park near the waterfront.
James Johnson, another Twitter friend lives in Panama City and was gracious enough to take us to a couple of really cool restaurants. The first one was Captain Anderson's. It was an old local staple with a variety of delicious fish overlooking a dock with boats moored all along the backside. Next, we went to Ernie's Bayfront Grill & Brewhouse. They have a great wraparound back deck that overlooks the dock – a coastal feature present at most establishments in this neck of the woods.
Did I mention it was Bike Week in Panama City Beach? Tens of thousands of Harley Davidson's roared through the streets creating a cacophony of engine noise, music and general revelry. One of the things that really spoiled the dinner we had at Guy Harvey's was the occasional biker who just had to rev his engine for effect in the parking lot. We were unable to hear each other, and the smell of exhaust was stifling. I did learn a new acronym, though. RUB, Rich Urban Biker, and there were many of these! The way RUBs were described to me was guys who have their bikes shipped down while they board their private jets, change out of their suits into their leathers, and paint on temporary tattoos for the week. As funny as this may seem, from what I saw, the description hit its mark!
One last thing I feel it is important to mention before we leave Florida is we spent three full months along the coastline from Miami down to Key West, and over to the west coast and up through the panhandle. Stewart loves to fish, and as I've previously written about even caught Emma while engaged in night fishing off our back dock. During all this time, with countless hours spent bridge fishing, dock fishing and bank fishing, money spent on bait, tackle and equipment, we did not have a single fish dinner that did not come from the grocery store or a restaurant. Stewart is a lot of wonderful things. A fisherman is no one of them.
(I realize this blog is really, really long, but it has been a while since I updated, so please bare with me.)
We headed back to New Orleans, and spent two weeks at the Pontchartrain Landing RV Park. Of all the places we stayed, this was the most enjoyable. It was not the most scenic (we were for the most part in a shipyard), or the best facilities (no restaurant, game room or boat rentals), or the most centrally located (we were down a torn up road right in the midst of Katrina's devastation), but it was STILL the best campground so far. It's all about the people. This place had some of the nicest folks we'd met anywhere. The Property Managers, Nate and Dawn Garrder, were always available, kind and working hard to make this the best place to stay in New Orleans. The people working with them, like Jim and Bunny McElyea stopped by just to say hi and see if there was anything we needed. When Jim heard I had gotten good news from Kenner, he immediately went and found his wife to tell her. Bunny was by to share in my joy. We've been traveling for almost seven months, and this was the first time we even knew the names of staffers, nonetheless visited with them. They are doing a lot of work to make this place beautiful and fully functional for its guests. We will definitely be going back there.
16 May was our last Saturday night in New Orleans, and we didn't want to miss one last chance to enjoy the fantastic music scene this great city has to offer. So, around 9:30 we headed over to Bourbon Street where you are almost guaranteed to find good music for free (or the very most, the cost of a beer). We walked around for a bit before we heard some of the best guitar playing either of us had ever heard coming out of Tropical Isle. The place was packed near the front, so we worked our way to the back of the bar area right near the stage. Right in front of us were friends of the bands, one of whom was a music producer out of Austin, TX. He started telling us about the history of the All Purpose Blues Band, and Billy Gregory, lead guitar, in particular. It seems Billy used to play with A Beautiful Day, and has been a New Orleans staple for decades. Their rendition of Black Magic Woman would have made Santana proud! When the band was through with their set, they came over and introduced themselves to us. Stewart and Billy quickly got into a discussion of calluses (Stewart had them, Billy didn't). I was chatting with one of the other musicians, when suddenly Stewart grabbed my arm and starts pushing me. I was a bit surprised my gentle husband was manhandling me in this way, but decided to ignore him. When he kept at it, I decided maybe I should investigate what he wanted. At this point, his gingerly pushing became much more direct, with verbal instructions. “Move”, he yelled. “Let's go”. Now, anyone who knows me will tell you, those are fighting words for me! When I asked him what the bleep he was doing, he yelled, “this place is on fire! Now, MOVE!”. Finally, I got it. I moved. Poor Stewart. Fortunately, no one was hurt. Unfortunately, it turned into a 4-Alarm fire with 70 firefighters working over the next couple of hours to extinguish the flames. Miraculously, no other buildings were damaged. The owners are planning on rebuilding, and the employees and band assured us they will find temporary work along Bourbon Street until the Tropical Isle reopens.
After we were certain everyone was out safely, and that they would not be playing another set, we wandered down the street to Famous Door, a venue we had visited previously. The same band, Rock Box, was playing. They did a good job covering everything from Led Zeppelin to Lynyrd Skynyrd. We stayed until they finished their set, then moved on to another blues club, where we heard New Orleans Levee Board Blues perform. They were world class musicians, but it was obvious they were playing to the crowd instead of playing what they loved. We were seated right in front, and the dance floor was empty. The place was about half full. I nagged Stewart until he finally gave in and danced with me. Within moments the dance floor filled up, and the band came alive. A group of young women gathered for a bachelorette party saw the crowd enjoying themselves, so they came on inside. The bride was up on stage dancing, her friends all donned wigs in colors ranging from pink to green to purple. By the time the band had finished two songs, there wasn't an empty table or an empty inch on the dance floor. It was time to call it a night.
After all the excitement of Florida and New Orleans, we decided to bookend this segment of our trip with a return to my hometown, Dallas, TX. We arrived in Dallas on 21 May, and will be taking some trips throughout the state. More later...
24 May 2009
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.
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.
05 May 2009
For Mother's Day Rememberance
I wrote this poem on 1 November 1990, a year and a day after my mom, Dolores Bass Gordon died. With Mother's Day upon us, I wanted to share it with you. I'm not much of a poet, but anyone who has lost their mom will appreciate the sentiment. This Halloween will be 20 years since I buried her, and not a day goes by that I don't miss her.
A Poem for Mom
A year has past.
Three hundred sixty five firsts.
The first Thanksgiving,
The fist Mother’s Day,
The first Halloween.
Now comes the time of healing.
I can look back on memories
And you were not there,
Except in spirit,
Except in the pain in my heart.
Can seconds begin to return
The sweetness to my days?
Will the fall colors shine more brightly?
Will the winter fire warm me?
Can I live with this veil on my senses?
Life and death, death and life
The earth is nourished by our passing.
Yet, I hunger for your presence.
When will I be satiated?
When?
A year has past.
Three hundred sixty five firsts.
The cycle is complete.
I must go on
For the first time
Through the second year.
Mara Gordon
11/01/1990
A Poem for Mom
A year has past.
Three hundred sixty five firsts.
The first Thanksgiving,
The fist Mother’s Day,
The first Halloween.
Now comes the time of healing.
I can look back on memories
And you were not there,
Except in spirit,
Except in the pain in my heart.
Can seconds begin to return
The sweetness to my days?
Will the fall colors shine more brightly?
Will the winter fire warm me?
Can I live with this veil on my senses?
Life and death, death and life
The earth is nourished by our passing.
Yet, I hunger for your presence.
When will I be satiated?
When?
A year has past.
Three hundred sixty five firsts.
The cycle is complete.
I must go on
For the first time
Through the second year.
Mara Gordon
11/01/1990
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