Octreotide Scan Recap

August 16, 2011

On the way up to Boston (for my Octreotide scans), we stopped in Mystic, Conn. for my "meet and greet" with a beluga whale. Afterward, we ate at Sea Swirl, a seafood and ice cream stand which is housed in an old, converted Carvel Ice Cream storefront.

Mystic Sea Port (where Humphrey Bogart and Lauren Bacall spent their honeymoon)

I Love Sea Swirl's Logo: a Fish Eating an Ice Cream Cone

Sea Swirl's clam strips are simultaneously flaky and chewy - in a good way.

Sea Swirl has both soft serve and hard ice cream (including black raspberry); I was especially excited to see watermelon soft serve - but discovered it was vanilla ice cream with a "flavor blast" of watermelon... still delicious.

After we left Mystic, Connecticut, we went to my aunt's place in Wakefield, Massachusetts - where we stayed for a few days in preparation for my Dana-Farber appointments.



August 17, 2011

We arrived at Dana-Farber at 8:00am, and after we wandered around the wrong building and the wrong floor for a while, Gary and I finally found the nuclear medicine department. Perhaps the coolest thing about the entire experience was the crazy-looking metal container that my radioactive iv shot came in - the nurse explained "this container is to protect me, not you." Ok, that's comforting I guess.



After four hours, the scans started. I hated it. I thought I'd be fine after conquering the MRI, but I was wrong. While the Oscan machine is open on both sides, a massive, flat camera gets lowered down until it's right above your nose (for much of the time). Even with a blindfold, meditation music, and deep breathing - I spent nearly every moment fighting panic.



At first, I couldn't figure out why I was having such a problem with the tests (which are a couple of hours long) until I remembered that in my early 20s I went through a phase of having really vivid nightmares of being buried alive. Worse than the nightmares themselves, however, was the fact that somehow I'd manage to crawl UNDER the bed during my sleep... so I'd actually be touching the underneath of my mattress while dreaming that I was feeling the inside of a coffin. I would scream and scream until someone in the house would pull me out from underneath the bed and wake me up. I think having a large flat surface over my face triggered those memories. Hopefully, I won't need to get another Oscan for a long, long time.

My Radioactive "Non-Warning" Label





Octreoscan Machine (the flat screen lowers down once you slide into that doughnut looking hole)





Gene Display at Dana-Farber Cancer Institute

Post Oscan Activities

Since my first Oscan was an all-day event, Gary took in an afternoon Red Sox game at Fenway. I had some time to kill in between my testing and the end of the ballgame, so I went to the Gardner Museum, which is one of the most eclectic, fascinating, beautiful museums I've ever been to. (Travel note: Fenway Park and the Gardner Museum are both within walking distance of Dana-Farber, and totally worth a visit.)

August 18, 2011

After my second day of testing, Gary and I headed home - and hit Frank Pepe Pizzeria in New Haven, Conn. for a clam pie. Gary thought it was absolutely pizza hall-of-fame material; I thought it was solid, but not mind-blowing.

We finally got our clam pie (See previous blog post: Not So Clamtastic aka Shell Shocked)

Muddled Hope: Oscan Test

Editing Note: The above picture has been changed from the original post because THIS is really what an Oscan machine looks like... before that big block looking thing lowers down until it almost touches your nose.

After a lot of invaluable input from family, friends and fellow noid survivors, Gary and I decided to go ahead and keep my appointment at Dana-Farber tomorrow for an Octreotide scan (aka Oscan). After we made our final decision, Gary turned to me and said, "I don't even know what to hope for anymore... I'm not sure if we want the test to come back positive or negative."



I know what you're thinking... how can you want the test to come back positive for cancer? Well, here is the problem - regardless of whether the Oscan test shows that I have carcinoid syndrome, or it's another phantom disease making me sick - there's still a silent mutiny going on inside of my body. If it's related to the carcinoid, at least the enemy has a name... and we have a couple of weapons in our arsenal to fight it. If it's not the cancer, we have no immediate course of action - just more specialists and tests, pain and frustration.



The other tricky thing is that you wouldn't know by just looking at me that I'm sick, so a "positive" result would make me feel... well a little less crazy. Every time I'm sitting across from a new doctor - he inevitably looks at me skeptically after I describe my symptoms - like he just can't believe that this athletically built, happy looking girl (with all her hair) can really have anything all "that" wrong with her. It's like I'm at my car mechanic's garage, trying to explain a weird sound my car is making, and my mechanic is looking at me like I'm nuts.



One of the blogs that I follow is The Cancer Culture Chronicles, which details the journey of a very brave (and talented) author in her battle against breast cancer. Recently, she wrote a post "Look at Me" about this very phenomenon:



" 'You just wouldn't know it to look at you,' clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.



I've heard this expression many times, and I'm never quite sure how to respond. The thing is, pain for the most part is invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion." The Cancer Culture Chronicles



So much of what is wrong with me (including a lot of pain) is also invisible. Every day activities - such as climbing my condo stairs, have become difficult mini-battles.







These few little steps used to be a non-issue; now, they are my nemesis. Other small "changes" I've gone through in the last 8 months - that are invisible to the outside world - include:



- sleeping in two towels to try to sop-up some of the perspiration from my severe night sweats

- scarfing down nausea pills when the cold sweats and spinning come on

- regularly taking my temperature to monitor a never ending series of low-grade fevers

- constantly checking my heart rate at the gym to make sure it doesn't suddenly drop to 50 bpm (usually it does this after I hit 140 bpm)

- having to stop and rest - a lot

- making these little whimpers of pain every once and awhile... that just squeak out.



While most of the world aren't privy to this new reality, my friends and family are - and they tell everyone (including me), "I just can't explain it - but she's sick and weak." Their confirmation is comforting, as if they are sitting next to me at the garage with my mechanic saying, "yup- I know that car really well too, and something isn't working right."



So my big question is which girl will the Oscan detect tomorrow: the one who at first blush seems absolutely fine, or the one whose body is slowly deteriorating a little more each month? Will the Oscan come up with some answers, or just tell us to "go fish" again? Whatever it shows, I guess it's good news: negative = no more cancer; positive = a couple of treatments that might make me feel better. I suppose we will just have to hope for "the best"; whatever that may be.

Boston MD (Dana-Farber Cancer Institute)

The trip to Dana-Farber Cancer Institute to see a carcinoid expert ended up being extraordinarily anti-climatic.



Dr. Kulke was nice enough, and smiled a lot. He had all my records and pathology slides. The appointment started with me patiently explaining my myriad of symptoms: heart problems, joint pain, exhaustion, flushing, rashes, fevers, night sweats, nausea, abdomen distention and pressure, leg swelling, and muscle weakness.



After I was done, Gary asked him: "Does any of that sound familiar?"

He just smiled and said, "Not really."

Followed by awkward silence.



Dr. Kulke then summarized his opinion: there is a very low probability the cancer has developed into the syndrome (good news), but he couldn't rule it out since some of my symptoms are consistent with the syndrome (ambivalent news). He advised an octreotide scan (two-day nuclear medicine test) along with a blood test for a NET tumor marker to investigate further. His only other suggestion was to get a good general practitioner. We scheduled the octreotide scan for next week, and a follow up appointment with him in September.



(I also asked him whether he knew anything about the black raspberry powder - he said he had heard some of his patients talk about it but wouldn't put much stock in it.)



Bottom line is: we didn't learn anything new. Everyone agrees that something is making me really sick, but both Dr. Nash and Dr. Kulke concur that there is only a slim probability that carcinoid syndrome is the cause. If the next tests come back negative for additional NET tumors, I'll have to see a slew of new specialists. It feels like deja vu all over again (6 years of misdiagnosis before carcinoid was found).



Don't get me wrong; I am very grateful that my cancer is most likely gone (or at least under control), but I am disheartened that there is no real plan of action to get me better. All I know is that I'm 37 - I am not diabetic nor overweight, I don't drink, smoke or do drugs, I exercise and eat organically - I should not feel like I'm stuck in the body of a 70 year old woman.



Gary and I decided that since the only thing Dr. Kulke offered was a test Dr. Nash didn't want to do - we would call Dr. Nash's office to see if he would change his mind and order the test to save us a trip back to Boston. Rachel (best nurse in the entire world) called today from Dr. Nash's office, and said he wanted me to meet with a different doctor at Sloan Kettering, Diane Reidy, who was well versed in carcinoid to discuss the merits of the new tests and my current condition. I have an appointment with her on September 9th.



Big question: do I cancel the octreotide scan in Boston? Since Dr. Nash doesn't believe in octreotide scans, I assume the new Sloan doctor doesn't either. I'm not exactly thrilled about being injected with radioactive material - but what if it lights up something that explains what's wrong with me? I guess it comes down to trust - and I trust Dr. Nash and Sloan Kettering; and I was really impressed with Dr. Reidy's CV - so most likely I'll say "thanks, but no thanks" to the pleasant Dr. Kulke and "let's get down to business" to Dr. Reidy.



One thing that Dr. Nash's nurse Rachel did say, however, is that I can't put off my cardiology appointment any longer - she's right. It's pretty scary when your heart stops and is so violent in restarting that you cough and shake like a madman; finding a good cardiologist just got top billing on my summer to-do list.



Update August 12th: After talking it over with Gary and my family, as well as other Carcinoid survivors, I decided to keep both appointments: the one in Boston for the octreotide scan and the one at Sloan-Kettering with Dr. Reidy. Until we find answers, we decided that we should see all the "experts" possible and do any non-invasive testing that might help shed some light on this thing.

Colonoscopy Results

Even though this was my 5th bowel prep in 15 months, all did not go exactly as planned.

I had major vomiting and fever issues, and lost 5.6 lbs between 4 pm Mon afternoon and 5:30 am Tues morning. In fact, I actually started blacking out right before my iv went in, which - thankfully - has never happened before.


The great news is that they got me stabilized, and my colonoscopy came back free from any further growths! We are really happy with the end results (no pun intended), and I'm relieved that I don't need another one until next year.

On a side note - Gary and I love my RWJ colorectal oncological surgeon who does my yearly tests (Dr. Maloney-Patel). She just recently had a baby girl, so we got her a little newborn outfit as a small token of our gratitude for her amazing ongoing care and support. (I must have looked a bit odd in the ambulatory surgery waiting room - wearing a cancer survivor shirt and two hospital id bracelettes, with a baby present on my lap...)

It turns out that I was Dr. Maloney-Patel's first patient back from maternity leave, and that her baby girl - Nina - shares my birthday (May 14th). Somehow the "cuteness" of this news overshadowed the miserableness of the prep, and I couldn't help but flash a big, toothy smile at the anesthesiologist, right before he put me under.

- Posted using BlogPress from my iPhone

Famous Still Lifes

Paul Cezanne
Still Life with Apples
Oil on canvas, 18 1/8 x 21 5/8 (1890)

Marlena Johnston

Still Life with Miralax and Ben & Jerry's
Photo on iphone, 2.1 MB (2011)

The night before a bowel prep, I give myself a free pass to eat whatever I want - so last night, I had sushi and a 1/2 pint of Ben and Jerry's Chubby Hubby ice cream... today, I am on a clear liquid diet, and around 4 pm will start consuming 255 grams of Miralax, 4 Dulcolax pills, and 64 ounces of Gatorade in preparation for my colonoscopy tomorrow.

Zebra Cover: Smithsonian Magazine

A friend of mine texted me the Smithsonian Magazine cover for March 2011. Pretty neat!

After reading the magazine's featured article about the 20,000 plains zebras that wander through Botswana’s Makgadikgadi Pans - I'm even more convinced that the zebra is the PERFECT mascot for carcinoid survivors, because we share many of the same qualities ...

* Spirited: zebras have a wild spirit that makes them nearly impossible to tame or domesticate;

* Unique: like a human fingerprint, each zebra stripe pattern is identifiably different;

* Resilient: zebras "walk 34-mile round trips every two to four days to get from water to food, to water again, on an endless journey between thirst and hunger"; it's estimated that they travel more than 2,300 miles a year.

To Read the full article in the Smithsonian Magazine: "Nothing Can Stop the Zebra" click HERE.

iphone picture 6/1/11

A few weeks ago, I chaperoned the senior class trip to Six Flags Great Adventure and escaped the 94 degree heat for a while by partaking in the largest drive-thru safari outside of Africa. The 350-acre wildlife preserve has more than 1,200 exotic animals - including zebras of course!

But the Smithsonian article has me thinking - maybe I should take a trip to Africa to see these magnificent creatures, that hold so much meaning for me now, in the wild.

Representing Zebras at Relay for Life...

Two hours from now, I will be speaking in front of 300 people at the opening ceremonies of our school's Relay for Life event, sponsored by the American Cancer Society. Below is my speech; I have to say... I'm really nervous.

Relay for Life Speech

Many of you know me as Ms. Johnston or Ms. J – an English teacher here at PC. Some of you know me as Marlena, a cancer survivor and advocate; but my friends and family know me simply as Mar or MJ, and they have stood by my side this past year as I’ve struggled to balance being both a teacher and a cancer patient. While cancer has not taken over my identity, it certainly has changed it.

When I was first asked to speak at Relay as a cancer survivor, I was honored, humbled and a little baffled as to where to begin. So, I did what any good English teacher would do – and looked up the definition of “survivor” in the dictionary. This is what I found:

Survivor (noun)
1. a person who survives.

Not a particularly useful definition; so I looked up the word “survive”:

To Survive (verb)
1. To continue to live or exist, esp. in spite of danger or hardship
2. To manage to keep going in difficult circumstances

I like this last definition best because that’s what cancer patients do every day – they “manage to keep going” despite getting plucked out of their normal lives and plopped into a foreign land of needles, and survival rates, and doctor appointments, and chemo, and surgeries…

Susan Sontag said: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

Every cancer patient knows the exact day their obligatory stay in the “kingdom of sick” began… it’s their diagnosis date. The day you get diagnosed with cancer, everything changes. In fact, Lance Armstrong doesn’t even celebrate his birthday anymore; instead, he celebrates October 2nd - the anniversary of his cancer diagnosis.

On April 27th 2010, I was diagnosed with carcinoid cancer and began my own journey into a world which was not only foreign to myself – but to most of the medical profession as well.

Prior to my diagnosis, I had been sick for at least 6 or 7 years – but no one could figure out why. Last year, they found a suspicious looking ovarian cyst, and thought it could be ovarian cancer, which would account for my abdomen pain, weakness and severe nausea; so I had surgery to have it removed.

When I woke up from surgery, my oncologist had a big smile on her face, and told me that they had done an immediate biopsy of the cyst and were 99% sure it wasn’t cancer. She also explained that – strangely - they ended up having to remove my appendix because it looked “deformed” and that I probably had recurring appendicitis, which would explain a lot of my symptoms.

A few days later, I was resting at home when my doctor called: she said, “I have great news Marlena, I just got the biopsy back on your cyst, and you don’t have cancer…let me see if the pathology on the appendix came in yet, I’m sure it’s nothing, just routine” … I waited a few minutes while she checked the computer – and her voice changed as she said “I have to call you back.”

About 15 min later, she called back to tell me that they had found a 3 cm carcinoid tumor in my appendix, and that I would have to have another surgery called a right hemicolectomy to remove half of my colon and about 20 lymph nodes.

I had never heard of carcinoid cancer before… most people haven’t. Only about 11,000 people are diagnosed with carcinoid cancer every year in the US. It’s rare, and it is unlike any other type of cancer out there. It is caused by neuroendocrine tumors, or NETS, that secrete hormones into the system … these tumors aren’t confined to any one specific area in the body – and can develop in the digestive system, liver, pancreas or lungs.

Out of the approximate 11,000 cases of carcinoid cancer reported each year – less than 150 people are diagnosed with the type and stage of appendicenal carcinoid cancer that I have.

I had hit the “unlucky lottery.”

Carcinoid is rarely, if ever, cured – it doesn’t respond to traditional cancer treatments and doesn't ever leave the body…it’s kind of like bread mold, and spreads like little spores, disrupting all of your major systems, including the heart.

There are only a couple of doctors in the country who specialize in treatments – and because most doctors don’t know about carcinoid, an estimated 90% of neuroendocrine tumors are incorrectly diagnosed, and the average patient waits over 5 years for a proper diagnosis.

The ribbon for carcinoid cancer is zebra striped, and zebras are sort of our mascot along with the slogan “if you don’t suspect it, you can’t detect it.” The zebra is to remind doctors: “if you hear hoofbeats, don’t automatically assume it’s a horse – it could be a zebra.”

Over the past year, my role as an educator has grown. I now find myself not only talking about Shakespeare and Dante on a daily basis, but also sharing my story as a carcinoid patient – and advocating the importance of educating the general public - as well as doctors - about this rare, deadly disease.

That’s why events like Relay for Life are so important. It’s a time to share information as well as hope; a place to celebrate those who continue to fight, as well as remember those who fought bravely. Thank you for joining me and everyone else here tonight in helping to make the American Cancer Society’s dream of “more birthdays” a reality.

Alien Autopsy

The problem with having a rare cancer is that every unusual symptom is cause for a trip to a specialist, who pokes and prods you as if you were some strange alien they just brought in from Area 51 for scrutiny. It gets sort of annoying after a while.

ACOR.ORG

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.

Lyme Disease Testing

I saw Dr. Yager (GP) last Thursday, and picked up a prescription for a Lyme disease test. Here is how that brief encounter went:

Dr: what test do you need done?
Me: the cardiologist thinks I should be tested for Lyme disease.
Dr: that's a good idea, it could be Lyme disease.
(awkward pause)
Dr: did they find something on your EKG?
Me: I think some stuff with my right ventricle.
Dr: well, carcinoid can affect the heart ... but something always shows up on an EKG.
(handing me the script)
Dr: this isn't a very good test.
Me: what do you mean?
Dr: it can come back positive when you don't have Lyme disease, and come back negative when you do.
(second awkward pause)
Me: ok
Dr: it's not a very good test; we'll call you with the results.
Me: uh, ok. Thanks

15 minutes later, I was at LabCorp, getting yet another vile of blood drawn for a test that is apparently meaningless; I have absolutely no idea what to do when I get the results.

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Update 5/28: Lyme Test Came Back Negative. (Despite Dr. Yager's distrust of the results, I'm crossing Lyme off the list.)

Black Raspberries v. Carcinoid Cancer

A few weeks ago, I attended the Carcinoid Cancer Foundation's Symposium on Neuroendocrine Tumor Management at Mount Sinai Hospital. It was excellent; in particular, I was extremely impressed with Dr. Eugene Woltering from the New Orleans Neuroendocrine Tumor Specialists (NOLA NETS).

Dr. Woltering presented a radically different view and approach to carcinoid cancer treatment. Firstly, he considers carcinoid - whether a patient presents syndrome symptoms or not - to be a chronic disease because of its long term devastating effects on the body. He used the "hypothetical case" of a patient with a midgut carcinoid tumor (without noid or liver metastasization) to lay out what he considered to be the "standard of care" for carcinoid treatment following removal of the primary site tumor:

1. MRI and ecocardiogram every 6 months for the first three years following surgery;
2. Sandostatin monthly injections for a minimum of one year following surgery;
3. Octreoscan within the first year following surgery;
4. long term daily dose: 40 grams of black raspberry powder. (45 grams of freeze-dried powder is equal to 1 pound of fresh berries)

He also presented specialized target chemotherapy for recurrences... which he set at a much, much higher rate than Sloan Kettering does.

In short, he presented a more aggressive approach following surgery. Personally, I trust Dr. Nash, and prefer the "let's wait and see" approach rather than sandostatin injections and more screenings. I will, however, add the black raspberry powder to my diet.

The medical research (funded by the American Cancer Institute) Dr. Woltering presented on the benefits of black raspberries was overwhelming. The reason why it's such a "natural wonder drug" is that the antioxidant level in black raspberry powder exceeds all berry types - with anthocyanin (antioxidant) equaling 5 to 7 percent dry weight. Also, it is a COX2 inhibitor - reducing inflammation as well as slowing the growth of pre-malignant and malignant tumors.

The only problem is the cost (about 7$ a day). I have heard that some insurance companies will cover it with a prescription... I guess that's something worth investigating with my own insurance carrier (United Health Care). I'm not holding my breath.

Resources on Black Raspberry

Research about Black Raspberries and Cancer:
Science Daily Article: Black Raspberries Slow Cancer by Altering Hundreds of Genes
Ohio State Research: Black Raspberries Show Multiple Defenses in Thwarting Cancer
MSNBC: Black Raspberries Prevent Colorectal Cancer in Mice
Cancer Prevention Research: Black Raspberries Inhibit Intestinal Tumorigenesis Apc1638+ / - and MUC2-/- Mouse Models of Colorectal Cancer

Purchasing Black Raspberry Powder:
Note: you need to purchase 100% black raspberry powder - do not get tricked by products that advertise "black powder" made with blue raspberries! Also black raspberries are not the same fruit as the "blackberries" you buy in the store.

NutriFruit - $24.95 for 142 grams (most expensive)
Stokes Berry Farm - not accepting internet orders
Sturms Berry Farm - $79.20 for 5lbs of frozen berries (not powder)
BerriHealth - $340.50 for 3000 gram bulk powder
Acai Berry Pure Bulk - $325 for 5 lb bag (approximately 2267 grams)

Cardiologist

I saw a new cardiologist last week, who was less than impressive. Based on my experience, I put together a few tips for you budding heart doctors out there.

1. After a patient tells you that she had half of her colon removed because of a carcinoid tumor, your follow up question probably should not be, "so was it benign?"

2. Don't leave your patient alone for 20 min in the examining room while you google her disease.

3. Try to be specific when discussing test results, and avoid overgeneralized statements like: "I don't see anything very life threatening here."

4. Avoid starting sentences with: "well - you don't smell." (He wanted me to get fitted with a heart monitor halter before leaving the office - which would mean that I couldn't shower for 24-hrs).

5. Know how old your patient is, especially by the end of a 45-min appointment. (While flattering, the fact that he thought I was 26 years old, instead of 36, was a bit disconcerting.)

In addition to his bedside "quirks", my soon-to-be ex-cardiologist shared his initial findings based on my exam and echo test: irregularity (t-wave inversion) and insufficiency in the right ventricle with possible neurological disruption (causing heart rate to drop with exercise). He ordered a stress test, heart halter, and new echocardiogram. He also suggested that I get tested for lyme disease.

Initially, I scheduled the follow up tests for Thurs. - but decided to cancel them, since it's not a "very life threatening" condition; now I have time to find a different doctor before subjecting myself to more cardiac testing. In the meantime, I'll get the lyme disease test done - just to cross that possibility off the list.

Happy Anniversary to Me

“Birthdays don't really matter much anymore ... for me, I sort of have a new birthday and that's October 2nd, the day I was diagnosed, ... the day we all sort of look to and mark these milestones by one year, two year, five year, 10 year. Hopefully, I have a 50 year.” Lance Armstrong

One year ago today, I was diagnosed with carcinoid cancer; the following day, I started this blog. Recently, somebody commented that perhaps Channeling Jackie-O had lost focus, "I mean - is it a cancer blog? a travel blog? a food blog?" I guess the answer is - it's all of those things, because although cancer has become a big part of my life, it has not consumed my entire identity.

One of the toughest things about this past year has been trying to lead a "normal" life - in between doctor appointments... my blog is a record of both the cancer, and life beyond the cancer. So here is to another year of colonoscopies and Sloan Kettering appointments, teaching and grading essays, traveling with friends and eating great food... here is to another year of celebrating life - one day at a time.

CCF Symposium on Neuroendocrine Tumor Management

I just registered for the Carcinoid Cancer Foundation's 14th Annual Symposium, entitled "Neuroendocrine Tumor Management: The Era of Personalized Medicine" on Sunday, May 1st from 1:00 pm to 5:30 pm at Mount Sinai Hospital in New York City. The symposium will feature three NET medical experts, sharing their insights and expertise:

Richard R.P. Warner, MD
Professor of Medicine, Mount Sinai School of Medicine
Director of the Center for Carcinoid and Neroendocrine Tumors
Mt. Sinai Hospital, NYC
Medical Director, Carcinoid Cancer Foundation

Edward M. Wolin, MD
Co-Director, Carcinoid and Neuroendocrine Tumor Program
Medical Oncology, Samuel Oschin Cancer Center
Cedars Sinai Medical Center, LA California

Eugene A. Woltering, MD, FACS
The James D. Rives Professor of Surgery and Neurosciences
Louisiana State University Health Sciences Center
New Orleans, Louisiana

To register for the symposium, click HERE.

Managing an "Orphan Disease"

"Carcinoid cancer and carcinoid syndrome are orphan diseases that do not garner as much attention as more common diseases, but we are trying to change that" - Dr. Richard Warner



There are about 11,000 to 12,000 people diagnosed with a carcinoid tumor each year in the United States. About two-thirds of all carcinoid tumors are in the gastrointestinal system. Specifically, appendiceal carcinoids account for about 26% of all carcinoid tumors, and out of these - only about 5% of appendiceal carcinoid tumors are greater than 2 cm.

Bottom Line (approximatly): less than 156 people are diagnosed with an appendiceal carcinoid tumor greater than 2 cm every year in the United States; I am one of them.

My friend Christine jokes that I won the very elusive "unlucky lottery" - and when you consider that 1,600 new lottery millionaires are created every year...she makes a darn good point.

If it wasn't enough to have a rare cancer, I also have a laundry list of very unusual symptoms:

* constipation after a right hemicolectomy (Dr. Nash teasingly pointed out during my last visit that this symptom has been conspicuously missing from my previous blogs... touche doctor). Usually, people without half a colon have the "opposite" problem with their bowels. Again, leave it to me to be the odd duck. It's rare, but sometimes the nerves in the colon negatively respond to surgery and the colon doesn't work as well afterward. Dr. Nash said he only sees this reaction in a few patients a year, and I'm on a daily dose of Colace (perhaps permanently).

* a heart rate that drops as my exercise intensity increases

* weakening muscle strength and increased joint pain

* exhaustion to the point of tears

* fevers and nausea

The most frustrating issue is that I'm getting progressively worse with each month - sometimes it's even hard to walk now. Is it related to the carcinoid? Since the MRI didn't show signs of the carcinoid metastasizing in the liver - probably not... but it's such a rare disease, how can we be sure? In search of answers, Dr. Nash and I have mapped out the following plan (including my annual colonoscopy since mid-gut carcinoid increases my risk of colon cancer):

Future Schedule

May 5th: cardiology appointment - Dr. Avendano (Cardiovascular Interventionalists)
June: rheumatology appointment (Hospital for Special Surgery in NYC)
July: colonoscopy - Dr. Maloney Patel (Robert Wood Johnson Hospital, CINJ)
October 7th: follow-up appointment - Dr. Nash (Sloan Kettering)

Thanks everyone for your continued support, love and prayers; I couldn't have gotten this far without you.

MRI Results

Dr. Nash called yesterday evening to let me know that the MRI scan looked normal. YES!! Now, as long as the cardiologist doesn't find any leaking valves on my echo, we can safely eliminate carcinoid syndrome as the cause of my other symptoms.

UPDATE April 12th: I spoke to Dr. Nash, who called me in between his surgeries today. (This guy deserves a bronze statue in Sloan Kettering's hall of fame.) He explained the CT and MRI results a little more in detail. I have two small cysts on my liver that were not in my previous CT scan. This is not unusual, because CT pictures are taken in intervals - so they can miss things. He just wanted to make sure they weren't new growths or changing, and the MRI delivers a much clearer image for monitoring purposes. (To read more about diagnostic CT and MRI imaging of benign liver cysts, click HERE.)

Tips for Surviving an MRI

MRI Machine

So, it's all over. I got my MRI done today at Sloan Kettering, without taking the Ativan. While my claustrophobia is still a major issue, today's MRI test went much more smoothly than the last one.

What is an MRI like?

After a nurse runs your IV line, you go into the MRI room and lie down on the "patient table". For a liver MRI, you raise your hands over your head, and a technologist straps a "coil" over your chest - which looks a little like a baseball catcher's chest protector. Next, the entire table raises up so that it's even with the machine's opening, and the technologist pushes you into the MRI tunnel until you're completely inside.

After you're inside, the machine (which is a huge magnet) turns on...which is loud, REALLY loud. Periodically, the machine will instruct you to breath or hold your breath as it takes pictures. There will be a lot of loud buzzing and beeping - and toward the end of the test, a contrast die is injected into your IV. When it's all over, you get pulled out of the tunnel, and the table lowers down so it's easier to get off. The entire test takes anywhere from 35-40 min.

Top 5 Tips for MRI Testing

1. Wear pajamas and Uggs.

You can wear your own clothes for an MRI exam as long as there is absolutely no metal on them. This means nothing with snaps or zippers, no bras with underwire, and no metal aglets (the little tubes at the ends of sweatshirt strings and shoelaces). Make sure to also remove all jewelry.

2. Go in Feet First

For organ imaging (liver), request to be put into the machine "feet first". You still end up completely inside the machine, but it psychologically feels better when your head is the last thing to go inside the tunnel.

I love this cutaway diagram, mainly for the totally unnecessary identification of the "patient" - as if they were worried that people might mix up the "patient" with the "radio frequency coil" or the "gradient coils"

3. Get Blindfolded

Ask the technologist to give you a blindfold, and put it on before the table starts moving. This was a tip from my amazing friend (and hero) Sasha Cano, who won her battle with cancer after undergoing two brain mapping surgeries. Her story is nothing short of miraculous and inspirational, and she is featured in many of UCSF's advertisements (click HERE to read Sasha's story.) I don't know why it's so much better using a blindfold rather than just closing your eyes, but it really does help. Plus, you get to keep the snazzy blindfold as a lovely parting gift - BONUS!


4. Have a Secret Weapon

You need something to occupy your panicking mind for at least 30 minutes. I had two secret weapons: 1.) a folded-up slip of paper in my shoe with an inspirational quote printed on it and 2.) a cadbury creme egg in my purse. While I was in the tunnel, I kept repeating the quote over and over in my head, while visualizing myself safely in my car on the way home from the hospital, eating that creamy, chocolately egg-shaped treat.

5. Take a Break

When the nurse comes into the room to inject the contrast into your IV, ask to be pulled out of the machine for a few minutes. Don't take the blindfold off or move around... It's enough just to know that you're out if the tunnel, which allows your body to relax.

Visiting the "Quote Garden" Before My MRI

Worrying is like a rocking chair, it gives you something to do, but it gets you nowhere. ~Glenn Turner

I am extraordinarily claustrophobic, so an MRI is basically my least favorite thing in the world. Dr. Nash ordered a mild sedative for me this time, which hopefully will help.

One of my students, who is a cheerleader, let me in on a little secret ... before the cheer team goes into a big competition (and they usually win Nationals), each cheerleader tucks a small slip of paper with an inspirational quote on it into their shoe. My student explained that the quote changes with each competition, and gives the team a sense of hidden strength and unity.

I'm stealing this idea, and have chosen the following quote to slip inside my own shoe for today's competition between myself and that coffin-like tube...

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." Eleanor Roosevelt

Between the quote and the sedative, I might just be able to control my panic long enough to avoid being pulled out of the machine every 15 minutes because I'm "freaking out" (I believe that's the medical term for it). Guess we will see.

CT Scan and Dr. Nash at Sloan Kettering

(Gary catches me looking contemplative while getting my contrast IV - as if I'm pondering my mortality or the meaning of life ... when actually, I am just thinking about how awkward my knee-high leather boots look with my paper gown.)

Just a quick update on my CT scan (which stands for "computed axial tomography") and followup appointment with Dr. Nash yesterday.

First, the good news.

It turns out that Dr. Nash reads my blog (how awesome is that?), and he started the appointment by correcting some information in one of my previous posts. Some medical journals lead me to believe that my likelihood of cancer recurrence was high, but Dr. Nash said that given the fact the cancer wasn't in my lymphnoids, my recurrence rate could be as low as 10% - which is fantastic!

Now, the other news.

The CT revealed two small spots on my liver, which probably are nothing to worry about - but since I have these other symptoms, I have to go for an MRI on Monday just as an extra precaution. If the cancer has spread to the liver, then there could be a chance that my other symptoms are being caused by carcinoid syndrome. If the cancer hasn't spread to the liver, then I have to go to a bunch of other specialists to try to figure out my pain issues. Either way, Monday will yield some answers and I can move forward - which will be a big relief.

- Posted using BlogPress from my iPhone

Echocardiogram Appointment

I have an echocardiogram scheduled for tomorrow, to check my heart valves. The good news is that I have low blood pressure - the weird thing is that ever since my surgery, my heart rate actually DROPS with strenuous exercise (riddle me that one Batman).

I am sure my echo will be fine. I've had a bunch of EKGs, which have come out alright with the exception of a "flipped" heart beat, and both Dr. Nash and my general practitioner told me not to worry about the dropping heart rate. Also, I learned that the relationship between blood pressure and heart rate is a dynamic one - meaning they don't always rise and fall together.

I guess tomorrow's echo results will just add a few more pieces of information to my puzzle.

Blood Pressure History
Pre-Surgery
March: 100/60
April: 113/66
May: 116/67
Post-Surgery
July: 92/60
March 7th: 105/60

Heart Rate Averages (post-surgery)
Average Resting Heart Rate: 84-90
Resting Heart Rate on March 7th: 72
Average Heart Rate Moderate Exercise: 120-132
Average Heart Rate Strenuous Exercise: 66-72