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.

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.

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

End of the Marking Period

I teach 4 sections of World Literature Honors (seniors) and 1 section of British Literature (juniors). Yesterday was the last day of the third marking period, and grades are due Monday. I always work on weekends, but last weekend was a marathon - I spent more than 25 hours grading and prepping. This weekend's forecast appears just as dismal: with 100% chance of excessive caffeine, "Murder, She Wrote" netflix reruns, and red pens.

Today, I am going to Sloan Kettering for a CT scan and meeting with Dr. Nash. I'll be curious to see my own "health" report card, which hopefully will show great improvement.

Schedule:
11:45 - radiology
12:45 - CT scan
2:00 - Dr. Nash

- Posted using BlogPress from my iPhone

Educating the Medical World about Carcinoid Cancer - One Dentist at a Time

I had my first appointment with my new dentist, Dr. Goldberg. Of course, in my new patient packet, I had to fill out a general Patient Medical History. You know the form; it's the one that lists a million possible illnesses - diabetes, heart disease, cancer etc - and you just check "yes" or "no" next to each one, indicating whether or not you have ever been diagnosed or treated for the illness in question. I have to admit, it felt a little weird checking off the "yes" box next to "cancer" for the first time, and writing in "carcinoid" in the space provided for "type".

After routine x-rays and a cleaning by a very friendly dental hygienist, I met Dr. Goldberg - who started with the normal chit-chat while reading over my file. Suddenly, he stopped mid-sentence and asked, "Carcinoid cancer? What's that? I've never even heard of that before."

I launched into my normal spiel: "It's a rare form of cancer caused by neuroendocrine tumors, which secrete hormones. Unlike other cancers, these types of tumors can grow in many different places, including the lungs and digestive system."

Dr. Goldberg: "How did they find it?"

Me: "They actually found it by accident. I was having surgery to remove a potentially cancerous ovarian cyst when my doctor thought my appendix looked deformed so she removed it; the tumor was inside. They think I must have had the cancer for at least 5-years becuase the tumor was so big, and I had to get several lymph nodes removed and have a right hemicolectomy to stop it from spreading."

Dr. Goldberg: "What's a hemicolectomy?"

Me: "It's when you take out half of the colon. I had it done at Sloan Kettering, and they did an amazing job. The most incredible part is that my surgeon was able to do the entire surgery through one port - meaning, one laparoscopic incision."

Awkward Pause... followed by me asking Dr. Goldberg if he wanted to see the scar. He said he really did, but didn't want to ask. So, I gingerly, slightly lifted up my sweater to reveal the small quarter-size scar above my bellybutton.

He gasped: "I can't believe it. That's absolutely amazing. They were able to get all that out through there?" Yup. Believe it doc.

It is insanely crazy when you really think about it - what they can do with surgeries now. However, even with the less-invasive surgeries, it's important to note that not all laparoscopies are the same. In fact, Dr. Nash was the only doctor I consulted with who could do a single-incision laparscopic right hemicolectomy. Even the renowned NJ Cancer Institute, where my surgery was initially scheduled, would have made at least 3 incisions for their laparscopic procedure. One port not only reduces scarring (I already had three from the first surgery), but it is also safer because there is only one potential infection site. This was especially lucky for me since my wound did get infected...can you imagine if I had three infected, open wounds? Just another reason why (as my students say): I <3 Sloan Kettering.

Three-Incision Laparoscopic Surgery (top) - NJ Cancer Institute

vs.

Single-Port Laparoscopic Surgery (bottom) - Sloan Kettering

Dr. Nash and One Tasty Sandwich

Thursday, we went back to Manhattan for a follow-up appointment with Dr. Nash. Unfortunately, his office is just a few blocks from the UN, where President Obama was addressing the world's leaders at the UN General Assembly. Street closures and thousands of police made navigating in and out of the island a little like the 1981 Kurt Russell movie, Escape from New York.

While the logistics to and from my appointment were a nightmare, the appointment itself couldn't have gone more smoothly. Dr. Nash said that my wound was officially closed, and that I didn't need to see him again until my next CT scan in six months. Going forward, I will have to have CT scans - at a minimum - every year for the rest of my life. It's a small inconvenience that I really don't mind; frankly, there is something comforting in knowing that Dr. Nash is going to be following me so closely for years to come.

We usually try to eat at one of our favorite Manhattan haunts when we see Dr. Nash, but because of the UN traffic, we opted instead to grab a gourmet sandwich from Pret A Manger on the way to the parking deck. It was beautiful (the sandwich, not the parking deck) - made with hummus and roasted tomatoes.


If you've never heard of Pret A Manger, you are missing out. It was started in London by a couple of college friends with one goal - to create handmade natural sandwiches and salads, without using any additives or preservatives. In their own words, they describe Pret as "a cross between a good restaurant, an Italian coffee bar and a bullet train." Every night, they get a shipment of local produce, which they use to create delicious products "to go"; anything not used or sold is donated to City Harvest, a local NYC charity, at the end of the day. Incredibly, they have donated over 90,000 lbs of homemade, fresh food to help feed hungry New Yorkers. Bravo Pret.

Dr. Garrett Nash & Sloan-Kettering: Going the Extra Mile

One thing that sets Sloan-Kettering Cancer Center apart from other hospitals is its focus on both a patient's physical and spiritual well being.

For example, the day after my surgery, a eucharistic minister came to my bedside and asked me if I wanted to receive holy communion. (I had identified myself as Catholic on my pre-admission forms.) I immediately felt stronger and calmer after receiving the Sacrament, and much more willing to face the day's challenges.

In addition to being sensitive to religious needs, Sloan-Kettering also fosters a sense of community and hope among its patients. Every nurse, doctor, and staff member who walked into my room had a smile on their face and cracked jokes. This jovial attitude spilled over into the hallways, where patients would cheer each other on as we did our required daily "laps" around the floor. I felt like I was completing my first marathon instead of just shuffling a few feet, holding onto my IV pole for support.

The 15th floor (my floor) is home to the Gastric Mixed Tumor/Colorectal Cancer Unit as well as the hospital's renowned recreation room, which was described by the NY Times as "something of a cancer patient’s corner bar, minus the booze". The recreation room has daily activities (see my previous blog posts about the Ritz-Carlton pastry chef demonstration and "look good feel better" program) as well as a pool table, library, and outdoor patio. The purpose of the room is to limit "down time" - when a cancer patient's mind is likely to drift to places that are dark and defeating.

My doctor, Garrett Nash, also demonstrated the difference in Sloan-Kettering's approach to patient care. Case in point, as soon as Dr. Nash found out my pathology results (Thursday night) he called me at the hospital. He could have easily waited until morning rounds to tell me the good news, but he went out of his way to ease my mind.

As if that weren't enough, Dr. Nash visited me on Saturday, his day off, in his running gear. It turns out that he runs to raise money for cancer research! He is currently training for the NYC Marathon in November as a member of Fred's Team, which is a program that raises money to support crucial research at MSKCC, "bringing us closer to a world without cancer - one mile at a time." [Click HERE to visit Dr. Nash's donor page and support Fred's Team.]
Sloan-Kettering truly embodies Francis Peabody's famous quote: "The secret of the care of the patient is in caring for the patient".

Nursing's BEST: Sloan-Kettering

I was on the 15th floor - and the nurses on the floor (MSKCC’s Gastric Mixed Tumor/Colorectal Cancer Unit) were named ADVANCE's 2008 Best Nursing Team in NY/NJ.

The personal care and attention was nothing short of extraordinary.

Read the full article here.

Hospital - Day Six

I just saw my doctor who said I could go home!!

I felt every single one of your warm wishes...it's about a 6 week recovery; please continue to hold me, my family and friends in your hearts.

Guess it's time to take down this Matisse print mom bought when she and my cousin Carly went to the MOMA on Wed.


It sure did add a touch of class to the room.


- Posted using BlogPress from my iPhone

4:15 am Vitals (BP, Temp, NYC Subway)

One thing you get used to in the hospital is being woken up at all hours of the night for vitals (blood pressure, temperature, blood oxygen), shots, and getting blood drawn. However, as soon as I saw him, I knew this nurse, scheduled to take my 4:15 am routine vitals, was going to be different. He was 6'3", 180 lbs, African American, around 50 years old, and had huge patches of major wild cats (leopards, tigers etc) sewn all over his scrubs. What a character.

I had "Brave Heart" on the TV, without the sound, and he took one look at the screen and said: "Oh yea, this guy gets pushed out the window"...5 min later - he was right, a guy gets pushed out of the window of a castle. (I never did see the movie so I can't elaborate on the scene; the TV was just on because I couldn't sleep.)

This started a conversation about evil and the NY subway, which went something like this:

"I was ex military so I always give people a once over and carry three things with me when I ride the subway: a flashlight, bottle of water, and pocket knife. There are a lot of tunnels down there and you don't know who you are sitting next to if the lights go out. I'll tell you though that if I saw that Rasputin joker get on the train I'd know something was up with that cat. He was supposed to be really tall and I've seen pictures...he looks like evil.

There are some scary, evil people in this world...(we talked about serial killers)...I was just reading about the Spanish Inquisition. Man, I can't understand them- they went after women who were free thinkers (he points to me....glad he can spot a woman-free-thinker when he sees one) and created a pool of malevolence which is where a lot of these other crazy people come from.

Like one time there was a guy lying on the floor of the subway car with a rooster on his chest and I said 'man are you serious with this chicken' but he just kept on lying there and put on a hat and sat in a chair when we got to the station. Other foreign police wouldn't let you lie in the middle of a subway car with a chicken; nope, they'd beat the breaks off you."

Indeed they would. I think.



- Posted using BlogPress from my iPhone

First Non-IV Dinner

First solid meal: pasta, tapioca, tea, mashed potatoes


- Posted using BlogPress from my iPhone

Hospital - Day Five

Like Bill Murry said in Ghost Busters: "looks like we are going to have to put some overtime in on this one"....

I can't eat or take pain meds without throwing up-- NOT a good combo!

So all you praying people out there-- I need you to put in some overtime so I can get outta here!!


- Posted using BlogPress from my iPhone

Guest Blog Post: Gary

Great News!!! Mar's pathology reports are back and there was NO CANCER in either her lymph nodes or her colon. We are beyond thrilled - now we can focus on recovering from surgery with a clear mind. WOO HOO!!!

Hospital - Day Two (Beauty and Hope)

Today my nurses signed me up for a very special program called "look good, feel better", which is a free, non-medical, brand-neutral, national public service program created to help individuals with cancer look good, improve their self-esteem, and manage their treatment with greater confidence.

About six patients were treated to a complete make over, complete with a make-up bag full of designer make up to keep. This program, along with the patient recreation room (also on my floor), were recently featured in a NY Times article. The volunteer in the picture on the left, all in pink, was actually my make-up artist and my angel...she made me feel about a million feet tall.

Minor set backs today included needing to get foley catheter put back in, a lot of nausea / throwing up, and a treatment of magnesium and potassium which basically feels like fire being injected into your veins. Tomorrow the epidural should come out... I hope the pain is ok.

In the words of Billy Crystal, it doesn't matter if you feel terrible as long as you "look absolutely mahvelous dahling" ...he was on to something; it definitely helps to face challenges with a smile (especially if that smile is perfectly coated in high-end shimmery pink lip gloss).
- Posted using BlogPress from my iPhone

Location:York Ave,New York,United States

Hospital - Day One

Yesterday's surgery went exactly as planned. I do not have any recollection whatsoever of anything that happened after I received the sedation for the epidural...apparently I posed some good questions to the doctor, but I have no memory of even seeing the doctor.

They were able to take out about one foot of colon and 20 lymph nodes through a 1.5 inch incision through my belly button. The doctor said nothing looked wrong to the naked eye, but it will be about one week until pathology comes back.

I had some problems sleeping last night because the epidural medicine caused poison-oak like itching; but after an injection of Benadryl and a change in narcotics I felt much better. I was able to drink clear liquids this morning and walk around a bit. I also got a visit from my girlfriend Christine, who brought me the cutest little doll in the world.

Gary and mom have been amazing, and were slightly rewarded today by taking part in a cooking demonstration by the pastry chef from the Ritz Carlton who held a class in the patient activity center on how to make molten lava cake...complete with a tasting and lovely parting gifts of a pair of Ritz Carlton slippers!

They are right now predicting I'll be released Sat or Sun, but it could be sooner (I hope). Thank you for all of the love and well wishes.



- Posted using BlogPress from my iPhone

Today is the Day

It is always strange arriving at a highly anticipated day. Whether it's a joyous occasion like a wedding or a heartbreaking gathering like a funeral; weeks, months, years of planning are played out within the same short 24-hr time period, after which the sun rises on a "new normal" and we learn to adjust our hopes and sorrows to somehow account for the magnitude and consequences of that one highly anticipated day...

"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." - Susan Sontag

- Posted using BlogPress from my iPhone

Pre-Surgery Appointment at Sloan-Kettering

On July 8, 2010 we traveled to Sloan-Kettering for my final appointment before my surgery with Dr. Nash in a week. They did the usual: EKG, chest-xray, blood work; standard stuff.

After we left Sloan-Kettering, I reflected a bit on the journey so far. In the last six months, I've had 16 doctor appointments, two lab work ups, one surgery, and six diagnostic tests: MRI (2/17); CT scan (3/18); endoscopy (4/2); anoscopy (4/28); sigmaoidoscopy (5/20); and colonoscopy (6/25). All of these diagnostic tests came back negative - even, unfortunately, the MRI and CT scans which failed to identify the large carcinoid tumor in my appendix prior to my first surgery.

Also, July 19th will be the fourth time I'll be put under general anesthesia in the last four months; however, it will be the first time that I'll also have epidural anesthesia. This will allow me to control my pain with the push of a little button for a few days following surgery, until I can eat and drink on my own.

What is Epidural anesthesia ?

After a sterile prep and draping, local anesthetic is placed to numb the area where the Epidural needle will be inserted. The needle for the Epidural passes between the vertebrae of the Spinal column to the Epidural space. Once the position is verified, a very small catheter(tube) is placed via the needle. The needle is then removed and the catheter remains in the Epidural space. The catheter is then taped to the patients back. Local anesthetics and narcotics are given epidurally via this catheter. The procedure usually takes 10 - 25 minutes.

How do I feel about getting an Epidural?

Initially, I was upset. I always thought the procedure sounded scary and painful; but, one thing you learn with cancer is nothing is as bad or as easy as you anticipate. I didn't think I could ever stand a foley catheter, but after minor complications with my first surgery, when I had no choice but to get one, I realized it wasn't that bad.

One of my favorite artists is Kate Bush, and I'm reminded of her lyrics from "Walk Straight Down the Middle" that sum up the reality of anything tough in life, including my next surgery:

But he thought, he was going to die

But he didn't

And she thought, she just couldn't cope

But she did

And we thought it would be so hard

But it wasn't

It wasn't easy, though.

Memorial Sloan-Kettering (MSK) Appointment aka Chicken Wings

There is a great scene in "Tommy Boy" - one of the funniest movies of all time - in which Tommy (a sweet brake pad salesman who couldn't sell lemonade to a man dying of thirst) convinces a disgruntled diner waitress to re-open the kitchen so that he can have some chicken wings. His friend Richard watches in awe:

Richard: That 180 you just pulled on the waitress, why can't you sell like that?

Tommy: I'm just having fun. If we didn't get the chicken wings - so what? We still got that meat lovers pizza in the trunk.

Richard: No, you relaxed. That is what selling is all about.

After this pivotal scene, Tommy remembers "chicken wings" whenever he meets a tough client, and becomes a one-man brake pad selling machine.

Gary and I walked into Memorial Sloan-Kettering (MSK) confident and relaxed. If I didn't like what Dr. Nash had to say, so what? I already had a surgery date at Robert Wood Johnson (RWJ).

Analogy = RWJ: Meat Lovers Pizza :: MSK: Chicken Wings

My Sloan-Kettering appointment took about 4.5 hours, and basically consisted of a series of exams by a nurse, a surgical fellow, and Dr. Nash (including a sigmoidoscopy). After all of the exams, Dr. Nash sat down and answered our questions:

Questions Answered:

Why does the colon have to be removed? We finally understand why a portion of the colon needs to be removed - there are a series of lymph nodes close to the appendix that need to be removed, and in order to do that you have to cut the blood supply that runs to the right portion of the colon - and you can't leave a dead organ inside of you.

What is the difference between Carcinoid Cancer and Goblet Cell Carcinoid? The leading paper regarding Goblet Cell Carcinoid came out of MSK, they do not present the same way in pathology - and look quite different; so if the pathology from RWJ indicates Carcinoid Dr. Nash didn't see any reason to think that it was Goblet Cell...but their pathologists would look for it.

Why didn't my tumor show up on my March CT scan? Dr. Nash actually personally reviewed the CT film and confirmed what Dr. Maloney said - the appendix is obscured by folds in the colon.

How do you die from Carcinoid Cancer? There are several ways, but destruction of the liver is most common.

How soon do I have to have the right hemicolectomy and are there any other options for treatment? Dr. Nash confirmed chemo doesn't work on this type of cancer so it is important to surgically remove everything with a potential of cancer - starting with the lymph noids. Dr. Nash confirmed that a right hemicolectomy was absolutely necessary for any tumors over 2 cm big. However, Dr. Nash disagreed with RWJ on one major point - the timing of the surgery. Dr. Nash said he wanted to wait until I was more fully healed from the first surgery - and when I mentioned that I wanted to wait until after school was out, Dr. Nash said that was absolutely appropriate since the cancer was slow growing a few weeks would only make a negligible difference in metastasizing.

Do I need an Octreoscan? No. Dr. Nash does not feel this is a good test for my case because it is mainly used for confirmation of Carcinoid, and we already have that confirmation. The better tool for follow up testing is CT scans.

How long have I had this cancer? Years.

Is there any chance of developing Carcinoid heart disease? No. I do not present symptoms of advanced Carcinoid Syndrome.

What is my follow up care? Since there is no cure, and no other effective treatment other than surgery, I will have regular CT scans for the rest of my life, followed by surgeries should any tumors reappear. I could never get another tumor, or I could get one in a few years - or in ten years, it's completely unpredictable.

Dr. Nash scheduled surgery for July 19th, and I signed an intent form - which is not a contract - to reserve the operating room. He said if I decided to go with RWJ, that all I had to do was call his office and they tear up the paper.

After a lot of conversations with family and friends, going over pros-cons with Gary, and trying to figure out where my emotions were re: comfort level, I have decided to go with MSK. In short, it makes sense that if they are going to do my follow-up care that I have the surgery there. Also, if anything goes wrong, they are the premier institution in the country for Carcinoid Cancer treatments.

New Time Line:

Cancel RWJ Surgery
Cancel CT (Dr. Nash said it's unnecessary)
June 25th - Colonoscopy (reschedule to another date in June so that I can attend graduation of my 12th graders)
July 8th - Pre-Surgery Testing at Sloan-Kettering
July 19th - Surgery by Dr. Nash at Sloan-Kettering

Dr. Garrett M. Nash, MD, MPH at Sloan-Kettering

I just received a call from Nicole at Memorial Sloan-Kettering Cancer Center. Basically, the conversation went like this:

Nicole: I wanted to let you know that I received all of your reports, and I forwarded them to a colorectal surgeon Dr. Garrett Nash for review. He may require a colonoscopy before he sees you.

Me: Does he specialize in carcinoid cancers?

Nicole: Yes. I specifically worked with a nurse on that team and she recommended either Dr. Nash or Dr. Temple, but Dr. Temple is not in next week and I thought that you wouldn't want to wait that long.

Me: Is Dr. Nash in your New York office?

Nicole: Yes, they all are. (See below for explanation of "they")

Me: I am scheduled for a colonoscopy, but my doctor doesn't want me to have it until the day before surgery.

Nicole: Yes, I know. I see you have it scheduled for the 7th, and I told the nurse that but sometimes our doctors will not see you without one, so we are trying to get it approved.

Me: I see (long dramatic pause)

Nicole: I only work part time, but if you don't hear from someone in this office by Monday, feel free to call me on Tuesday.

**Pleasantries Exchanged - Phone Call Ended- Googling Commenced**

There are two names that have come up at Sloan-Kettering as carcinoid experts, neither of whom are Garrett Nash. However, Sloan-Kettering uses a team approach, and both doctors who have come up in association with carcinoid cancer treatment (Philip Paty and David Kelsen) are on the Team of Colorectal Experts along with Garrett Nash.

Dr. Nash's education includes both Harvard and Columbia schools of medicine - so I think it's safe to say that he's good (see below); let's just hope he'll see me without anymore tests.

Education
MD, Columbia University College of Physicians and Surgeons; MPH, Harvard School of Public Health

Residencies
University of Massachusetts Medical Center; NewYork-Presbyterian Hospital/Weill Cornell Medical Center

Fellowships
NewYork-Presbyterian Hospital/Columbia and Cornell; Memorial Sloan-Kettering Cancer Center