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

Packing Progress: Wound Care

I'm home from vacation, and tomorrow we see Dr. Nash. Hopefully, he will tell us that my wound is healed enough to stop packing.

Wound Care 101

To recap: the incision from my laparoscipic right hemicolectomy got infected, so Dr. Nash had to re-open the wound. An open wound needs to be kept open, otherwise the top layers will heal over before the rest of the wound can close - creating a little pocket just ripe for infections.

In order to allow the wound to heal in layers, from the bottom up, you keep it open by packing it with sterile gauze. "Packing" a wound is exactly what it sounds like - you just shove as much gauze into the wound as will fit. This packing helps to fill open space, maintain a warm moist environment, and absorb drainage.

How much packing do you use? That depends on how deep the wound is. Initially, my wound took about 2 feet of packing (picture taken on July 30, 2010).


As the wound healed, it became more shallow and the amount of packing we had to use got less and less. Also, we did everything to accelerate the healing process, including changing the packing twice a day and increasing my protein intake.

Today, less than a month after it was re-opened, we can hardly fit more than a couple of inches of packing into the wound. The body's ability to heal is nothing short of miraculous, and I am grateful that we are almost over this little bump on the road to recovery.

For More HELP in wound care: visit the WOCN.org website.

Founded in 1968, the Wound, Ostomy and Continence Nurses Society (WOCN) is a professional, international nursing society of more than 4,600 healthcare professionals who are experts in the care of patients with wound, ostomy and incontinence.

Whoa!! I was NOT expecting that!

Cancer has been a land of "firsts" for me: first MRI, first CT, first endoscopy, first bowel prep, first anoscopy, first sigmaoidoscopy, first colonoscopy, first surgery (ever), first foley catheter (you get the picture).

Today was another first - the first time we had to change my wound dressing. We started by reviewing our notes from yesterday's appointment (we have a small red moleskin notebook that we take to every appointment):

Step One: remove the old bandages and packing
- peel away the very outer bandage of sticky gauze
- remove the two squares of dry gauze
- using the tweezers, remove the approx 2 foot strip of "packing" that is stuffed into wound

In the mornings, I am supposed to take a shower between steps one and two; and let the wound get soapy water into it.

Step Two: repack the wound
- cut a 2 foot strip of packing
- soak the packing in saline, and ring out excess water
- using the long cue-tips, pack the wound - leave a little bit sticking out
- place two squares of dry gauze over the packing
- cover with a bandage of sticky gauze

Next, we laid out all of our necessary "equipment" on the bathroom counter: tweezers, scissors, "packing", gloves, extra long q-tips, bandages and saline (mise en place baby).


We decided the process would work best with me lying down, so after I was comfortably resting on a towel in bed, Gary removed all of the dressing perfectly; and when he was done, I looked down and saw the wound, for the first time.

You see, I was so nervous yesterday that I didn't look at what Dr. Nash was doing when he was re-opening my wound (I basically just squeezed the stuffing out of Gary's hand and closed my eyes). In my mind, I guess I pictured a couple stitches being cut away, revealing a dime-sized hole which was then packed with a little gauze.

So when I looked down, I was shocked to find that Dr. Nash had taken ALL of the stitches out, and there was a 1.5" gaping slash in my gut. I have never seen anything like it. Since the wound had been stretched open by the packing, it looked as if I was actually missing a chunk of my body (like a shark bite).

Immediately, I felt this overwhelming sense of panic wash over me, and I began uncontrollably sobbing, only momentarily stopping to choke out the same sentence, over and over again: "I don't think I can do this". It was the first time I was really scared since my diagnosis.

Gary calmed me down and suggested that we just put a very loose bandage over the wound so I wouldn't have to see it as I took my shower. It was a brilliant idea. Although still crying, I was able to take my shower and Gary expertly repacked the wound.

Now that the shock has worn off, I have "regrouped" as my mother would say. I still feel a little self-doubting, but I know in my heart that I CAN do this; I just need to work on some breathing and visualization techniques for the next "first" can catch me unawares.

"I know God will not give me anything I can't handle; I just wish that He didn't trust me so much." ~ Mother Teresa

Warning! Not for the Squeamish

Cancer patients and doctors often speak in terms of percentages (survivor percentages, staging percentages, recurrence rates, etc). Even the treatments themselves carry risk factors.

Fact: On average, only about 10% of abdominal surgical wounds become infected (this percentage is lower at Sloan-Kettering).

In my case, we did everything possible to reduce the risk of infection. Firstly, I was instructed to take a shower the night before and morning of my surgery, using nothing but Hibiclens Antimicrobial and Antiseptic Skin Cleaner Liquid to reduce the risk of infection. Secondly, Dr. Nash was able to laparoscopically remove the 20 lymph nodes and foot of colon through one small incision, thereby decreasing the risk of infection. Finally, during surgery, antibiotics were administered.

However, it is impossible to completely eliminate the risk of infection with this kind of surgery, and despite these efforts, my wound still became infected.

Yesterday morning, I was washing my hands at the bathroom sink when I noticed the front of my shirt, by my incision area, had some light blood stains on it. When I lifted up my shirt for a closer look, clear liquid began trickling through the translucent surgical adhesive and down my abdomen. I called Gary in to look at it, and we were able to stop the drainage by having me lie down and gently blot the area with a tissue.

We called Dr. Nash's office and sent them a picture from Gary's iphone (photo on left). Based on our description and photo, Dr. Nash said I'd better come in.

To be honest - I thought the wound looked pretty good, and I was being over-cautious; however, as soon as Dr. Nash saw it he was able to determine that it was indeed infected, and the wound would have to heal from the inside out.

He explained that the redness around the wound, in addition to the fluid build up, were signs of infection. He then removed the clear, surgical adhesive patch (looks shiny in photo), reopened a portion of the wound (cut away stitches) and drained it. Afterward, he stuffed the "hole" with gauze. Finally, the entire incision was covered by gauze.

Dr. Nash informed us that this "dressing" would have to be changed twice a day. Gary was trained so that he will be able to change the dressing in the morning, and the office is going to arrange with my insurance for a home-care nurse to come and change my dressing in the afternoon.

Lessons Learned:

1. Use your iphone (or any camera phone) to digitally send pictures to your doctor if you think something is wrong.

2. Always error on the side of caution.

3. Don't rely on objectively concrete statistics when it comes to managing your own personal health care.

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

Post-Surgery Diet Restrictions

One of the big changes after Monday's surgery will be my restrictive diet (thank goodness it's a temporary change...I am Italian after all, and food is life and love all rolled into one delicious bite).

Here is a list of foods I can eat for the 4-6 weeks following surgery. Gary is an awesome cook - so if anyone has any great recipes out there, please send them along! Everything that I am allowed to eat is listed below.

Low-Fat, Low-Fiber Diet (aka mostly boring food)

Fats = low-fat or non-fat of the following items: margarine, mayonnaise, salad dressing, sour cream, cream cheese

Fruits = canned fruits, applesauce, a ripe banana, fruit cocktail

Meat and Meat Substitutes = tender beef, pork and lamb that are well-cooked and trimmed of any visible fat, skinless poultry, fish, eggs, low-fat tofu

Veges and Potatoes = well-cooked or canned vegetables without skin, lettuce, carrots, beets, asparagus tips, white potatoes without skin, string beans, tomato sauce

Soups = reduced-fat bouillon, broth

Beverages = coffee (THANK GOD), tea, apple or grape juice, cranberry juice

Milk Group = 1% or skim milk, low-fat peach flavored yogurt, low-fat ice cream without chocolate or nuts, low-fat cheese, low-fat pudding made with skim milk (no chocolate)

Breads = white bread or rolls without nuts, coconut or dried fruit; saltines, Oyster crackers, Graham crackers, waffles, pancakes, animal crackers, rye bread without seeds

Cereals and Grains = refined cereals such as Rice Krispies or Special K, farina, cream of wheat, white rice, grits, regular pasta, couscous

Deserts = low-fat plain cakes and cookies, gelatin, sherbet, hard candy, marshmallows, jellies or jams without seeds

Even eating from the above list of foods, I must stay under 40 grams of fat and 12 grams of fiber a day.

There are certainly some obvious meals: pancake with a ripe banana and a tablespoon of low-fat margarine; pasta and tomato sauce with asparagus tips; mashed potato with skinless chicken and string beans...but we are talking six weeks, 5 small meals a day = 210 meals to plan, so any creative recipes or snack ideas will be very, very welcome!

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.

Next Steps: Right Hemicolectomy and Tumor Board at RWJ

We met with Dr. Maloney Patel - a rectal-colon surgeon - on Friday, and she told us what we already suspected: with any carcinoid tumor over 2 cm - a right hemicolectomy must be performed.

The procedure consists of removing the part of the colon that was closest to the carcinoid and re-attaching it to the small intestines. The lymph nodes in this general area will also be removed and biopsied. The results of the biopsy will help determine staging for the cancer.

The great news is, in Dr. Maloney's own words, this surgery is exactly "her bag" and she is specifically trained to do this particular surgery laparoscopically. Also, she can do the entire procedure in one shot - initially, we thought it was a two-step process and I'd need a colostomy bag. (YES!!! no colostomy bag!!) I am also planning to go to Sloan-Kettering for a second opinion, but all the literature we have read indicates this is pretty much what has to be done.

The only potentially "bad" news that we got is that my appendix was attached to my abdomen wall, and had to be cut away. It may have been just scar tissue and inflammation from the tumor that caused the attachment, or it could mean that the tumor broke through the appendix wall and started spreading to the surrounding tissues (Stage III).

Because my cancer is rare, Dr. Maloney is going to present my cancer to the Tumor Board at RWJ. The Tumor Board is an interdisciplinary monthly conference about diagnosis and therapy for recently diagnosed cancer patients. The participants include members of the medical staff (oncologists, pathologists, surgeons, internists), nursing, nutrition, pharmacy, social services, hospice and community outreach. The purpose of the Tumor Board is to facilitate clinical, radiological, and pathological findings. The input of all specialties is encouraged. Recent advances in cancer diagnosis and therapeutics are also presented.

Barring something unusual from the Tumor Board or Sloan-Kettering, I am planning to go forward with the next surgery on June 8, 2010.