Monday, May 31, 2010
One of my very good friends loves the show House Md., which is a television show about a cantankerous yet brilliant doctor (named House) who is the Sherlock Holmes of rare diseases. When I told her about my cancer, she said that she had heard about carcinoids on the show. So for all you House fans out there, here is a list of episodes in which carcinoids make a guest appearance:
Season 1 Episode 3 "Occam's Razor" (Chase hypothesizes patient has a carcinoid)
Season 1 Episode 5 "Damned if You Do" (Cameron hypothesizes patient has a carcinoid)
Season 1 Episode 14 "Control" (Wilson does a CT scan to rule out carcinoid)
Season 5 Episode 10 "Let Them Eat Cake" (Kutner hypothesizes patient has a carcinoid)
Season 5 Episode 18 "Here Kitty" - (Final diagnosis - by House of course - is carcinoid tumor of the appendix)
Saturday, May 22, 2010
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:
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
Monday, May 17, 2010
Sloan-Kettering requested to examine my glass pathology slides; today I went to pick them up from Robert Wood Johnson.
RWJ was just ranked one of America's Best Hospitals 3 years in a row by US News & World Report - so you can understand my bewilderment when the woman at the "Information Desk" said that she had never heard of "pathology" before, and asked me to describe what they do. After my very precise explanation that went something like: "they look at cancer cells and stuff like that", the woman kindly replied, "maybe you should call someone; I've never heard of that department before."
After wandering around the hospital grounds for a while, trying to figure out where my slides were, I saw a new woman sitting behind the "Information Desk" who was wearing an official name tag that inspired confidence. After her very professional reply to my inquiry, I came to realize that the woman whom I had initially asked about pathology wasn't even an employee! She was just a "joe schmoe" standing in the general "Information Desk" area, and was trying the best she could to be helpful when I asked her for directions. My faith in RWJ restored, I set off for the "Tower Elevators" and quickly realized that pathology isn't an easy department to find.
Clearly lost, I asked one orderly for assistance, who told me to "take a left when you see the people with microscopes". Perhaps it's the symbolic English teacher in me, but I was expecting to find a clearly marked sign PATHOLOGY THIS WAY hanging over either 1. a large black and white photo depicting a row of scientists on the brink of discovery, or 2. a bronze sculpture of a scientist bent over a microscope hard at work....but no, after several twists and turns I came to a place where there were literally dozens of real-life people in lab coats bending over microscopes; at which point I turned left.
Triumphant, I finally found the pathology department and signed for the unmarked, nondescript padded manila envelop that contained seven glass slides encased in two small plastic containers. As I walked slowly back to my car, I began considering the significance of what I was actually carrying in my hand; I was carrying the answers to my illness. I suddenly felt very humble - my fate had come down to this, a series of purple stained blobs suspended between two thin layers of glass. However, be that as it may, I refuse to allow these little stained slides to color my entire world.
"In my room the world is beyond my understanding; but when I walk I see that it consists of three or four hills and a cloud." - Wallace Stevens
Friday, May 7, 2010
Just got an appointment with Dr. Nash at Sloan-Kettering for Thursday, May 20th (see post below). Dr. Nash only sees patients on Thursdays due to his surgery schedule, and May 13th is already booked (they will call me if there's a cancellation). I don't need a colonoscopy (yay)- but I do need to get my glass pathology slides from RWJ... I wonder how difficult that will be.
(Picture: after my surgery, when I came back to school, two of my senior boys handed me this little balloon along with a scribbley handwritten note....and yes, they really did cross out "It's a Girl" and write "Welcome Back" in black marker. What hams.)
I have been feeling very guilty about the amount of school I have missed because I love my kids and only want what's best for them. I am usually the kind of person who doesn't want to show even a hint of weakness or vulnerability in the work place, but today - again - I forced myself to stay home and nurse a soar throat instead of doing what I usually would do (which would be to go to work anyway). I finally decided that if I was going to get through the remainder of the year, I would need support at work in order to avoid the overwhelming temptation to push myself beyond my physical limits.
So, today I decided to let a few of my close colleagues at Paramus Catholic know about my situation. Below is the email I sent to them and some of the amazing words of encouragement I received in response; I am so lucky to have such caring people in my life.
"Dear Friends and Colleagues, First of all, thank you for all of the incredible support, prayers, love, kindness and help in keeping my classes going. I wanted to share with you that I was recently diagnosed with a rare carcinoid cancer, which is the cause for my recent absences. I have every reason to believe that with God's help I'll beat it, but my body right now is not letting me do what I want (which is to be at school working). I guarantee I'll be back in full force very, very soon! I am so lucky to have found my second home at PC - each one of you has made such a positive impact in my life; I am truly blessed."
* Beautifully said. I'll keep you in our intentions today as I teach! Love you. - B.G.
* You are truly an inspiration to me in the way you love the students and this profession. I am confident that you will return but in the meantime I will pray for your continued strength and determination to beat this. Take good care of yourself - we will miss you and look forward to your return. God bless you! - M.P.L
* I am so sorry to hear what you are going through. I will keep you in my thoughts and prayers. If there is anything I can do to help, please let me know. - A.P.
* By the grace of God, I know you can beat this. If I can be of help in any way, please let me know. Know that you will be in my prayers. Hugs. - L.R.
*I had no idea! If you need anything, please let me know and I will def say a prayer for you but I have faith that your faith is already carrying you through this and it is done. I will see you soon, again please don't hesitate if you need anything, to talk etc. I do have friends that work at Sloan Kettering if you need a second opinion or anything :) - M.L.
*Your directness, your openness, your balance of optimism and pragmatism do you credit. You are a good role model, in many ways. I'll see you later - F.M.
* Thank you so much for keeping me updated. I knew you have been out, but did not know why! Please know that Our Lord and His Mother will be hearing from me on your behalf!!!!! If you need anything else, PLEASE let me know. I am available and happy to be of service. God bless. - S.B.
*I am SO SORRY to hear of your illness. You happen to be one of my favorite teachers here - always so professional and accommodating. You will be in my prayers, and I believe you will beat it! - N.K.
* My thoughts and prayers are with you...come back to us soon!! - C.S.
* You'll be in my intentions every day...if you ever need anything let me know - T.S.
* First of all, I've subbed a few of your classes and they have been great kids. Second, I am very sorry to hear about your diagnosis. Anything you need at all please let me know. I will keep you in my prayers and pray for a speedy and safe recovery. You are not just a respected colleague, but someone who brightens my day whenever I get to see / chat with you. I hope to see your smiling face again soon. - J.S.
*I had no idea !!!! I just wanted to tell you that I am here... - B.R.
* It was inspiring to hear from you. My thoughts and prayers are with you for a successful outcome and your return to PC. We are truly blessed to have you in our PC family and English Dept. You have enhanced our PC community in many ways with your unique skills, special gifts, outstanding talent, amazing background, bright mind, cooperative nature and outstanding heart. I hope we see each other more next year on a professional and personal level. Your students love you and miss you. May the Lord's strength and peace be with you. - L.D.
* I had no idea. Please be assured that you will absolutely be in my prayers, and from the bottom of my heart if there is anything I can do please, please do not hesitate to ask - from grocery shopping, washing laundry, to taking you to doctor's appointments - I'll be there. Just keep me posted. - C.L.
* So very sorry to hear about your current setback. Try to keep in mind that God can make something good out of every kind of hardship. I guess He is asking something different from you right now. I will place you in my prayers, and, if you would like, I would have your name placed on the Felician Sisters' prayer list. -K.D.
* I hope you are feeling better. Please let me know if there is something else I can do to help. - C.D.
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.
MD, Columbia University College of Physicians and Surgeons; MPH, Harvard School of Public Health
University of Massachusetts Medical Center; NewYork-Presbyterian Hospital/Weill Cornell Medical Center
NewYork-Presbyterian Hospital/Columbia and Cornell; Memorial Sloan-Kettering Cancer Center
Thursday, May 6, 2010
I had my post-surgery appointment with Dr. Wagreich today, who was pleased with my progress but indicated that it would still be a couple of months before internally I was entirely healed. When I asked her about my appendix having to be cut away from my abdomen, she said that she had already spoken to Malone about it - and Malone would have to go in and biopsy that entire area since Wagreich, unaware of the potential for cancer, left some "scar tissue" that was connected to my appendix attached to my abdomen wall.
Wagreich also gave me copies of her and Dr. Davidov's surgery notes (he is the general surgeon who performed my appendectomy), as well as my pathology reports. I also went to University Radiology to pick up my barium drinks and CT / MRI reports.
I don't want to brag, but I've passed a couple of pretty tough tests in my day, most notably the California State Bar Exam and English Praxis Test. The feeling is always the same when you see that envelope, and today's little white envelopes were no different. The butterflies still fluttered even though this time I already knew, for the most part, my results. Unlike the CA Bar and Praxis, however, I didn't pass my pathology tests on my first try. (Warning to the medical world of rare cancers: I'm bringing my A-game to all future exams.)
Interestingly, since most of my medical tests and reports were so focused on my ovarian cyst and fibroids, little to no mention of my appendix appears. It is a little scary that no one seemed alarmed until pathology came back. Perhaps the most unsettling report concerns the CT scan because Dr. Malone said that she couldn't even see the appendix on the CT films, yet the CT report indicates the appendix looks normal.
The relevant report findings appear below:
3/18/10 CT Scan Report: "the terminal ileum and appendix appear unremarkable"
4/21/10 Surgery Notes from Dr. Davidov: "appendiceal tip slightly swollen and edematous in a clinical picture that might be consistent with a history of possible appendicitis that had improved, and now has recurred."
4/22/10 Pathology Report: "the tip of appendix is enlarged measuring 1.2x0.8x0.8 cm. sectioning of the tip reveals an area with soft yellow mass measuring 3x0.5x0.5 cm and extends to 1cm from the appendix base. Final pathological diagnosis of appendix, appendectomy: appendiceal carcinoid (3 cm in greatest dimension). Tumor infiltrates through the muscularis propria of the appendix into periappendiceal adipose tissue. Perineural invasion is noted."
Wednesday, May 5, 2010
I guess it's all about perspective, which is what I was trying to find tonight while wandering around one of my favorite places on earth: Barnes & Noble.
Sure, I can pretend to be a literary snob and claim to only shop at hip independent book stores like Book Ends in Ridgewood, or Labyrinth Books in Princeton, or City Lights in San Francisco. True - being in places like those is almost a religious experience, but when it comes down to it I'm a junkie for the written word, and Barnes & Noble is a quick, cheap fix for my insatiable addiction.
I'm not quite sure what exactly I was hoping to find...perhaps something uplifting, clinical and a little cathartic all at once - complete with a cool cover and an inside jacket littered with rave reviews from esteemed critics and cultural icons alike. I began searching.
I started in the NEW AGE section, but everything there was, well, too new agey.
The NEW AGE section was right next to CHRISTIAN INSPIRATION, which I immediately abandoned after seeing Joel Osteen's novel prominently displayed, since I personally don't find Joel Osteen particularly Christian nor inspirational.
I moved over to TRUE CRIME (my favorite genre), and thought that perhaps a grizzly murder might make me forget about colons, and lymph nodes, and nuclear medicine, and survival rates...but again, I was turned off by the first novel I saw: BMF - The Rise and Fall of Big Meech and The Black Mafia Family. I'm Sicilian. I have no interest in reading about Big Meech - call it national pride if you will. Moving on.
Over in SELF IMPROVEMENT, I found Jennifer Love Hewitt's book about dating and Queen Latifah's book: Put on Your Crown. I wasn't in a "girls kick ass" kinda mood, so I made my way to PSYCHOLOGY (one of my other favorite sections). Unfortunately, I couldn't concentrate because there was a creepy 45ish guy next to me in the SEX and RELATIONSHIPS section, shooting sideways glances in my direction; I couldn't tell who was more uncomfortable - him or me.
So I went back over to SELF IMPROVEMENT and I found a subsection labeled: Death & Grieving, Dreams, Dating. Now, this would make perfect sense if the shelf was filled with books featuring heroines who dreamed about killing their awful boyfriends, only to feel badly afterwords - but otherwise, a disconcerting combination.
Next, I made my way over to the MEDICAL REFERENCE section, which, unfortunately, was near the SEX and RELATIONSHIPS section where the creepy guy was still lurking among the Karma Sutra books. All I could find in my haste and awkwardness were Medical Reference books. (Duh - did I read the section label?) But just when I thought all hope was lost, out of the corner of my eye I saw an ominously entitled best seller: The War Against Toenail Fungus. And just like that - as I looked down and wiggled my perfectly painted pink toenails - I found it. Perspective.
Saturday, May 1, 2010
You can imagine our surprise, and the questions kept coming as we tried to learn more about my diagnosis. It turns out that "Carcinoid" is part of a group of tumors called neuroendocrine tumors (NET) that grow in hormone producing cells, and is classified as a "rare cancer" since only 11,000 - 12,000 carcinoid tumors are diagnosed in the United States each year.
At the suggestion of my family, I created a blog as a way for me to keep track of and share information. It was later suggested that I "go public" with the blog - the idea being that people could "follow" my progress...it would be like having my own little cheering section whenever I came to a new hurdle.
Thank you again for opening your hearts to me - I won't let you guys down!
I thought it would be useful for everyone, including myself, to have an overall time line of doctors, tests, results and surgeries:
October 2009 - after 10 years of off and on abdominal pain, I begin to experience extreme pain and pressure in my lower right abdomen. I am unable to keep food down due to nausea, and am extremely fatigued
November 25, 2009 - appointment with OBGYN Dr. Pinzon to discuss condition, she orders an ultra sound
December 21, 2009 - t/v ultra sound reveals a complex ovarian cyst and two major fibroids. Dr. Pinzon orders an MRI.
February 17, 2010 - MRI with and without contrast completed at University Radiology.
February 27, 2010 - appointment with Dr. Pinzon to discuss MRI results, which revealed a thick cell wall around the ovarian cyst that contained internal bleeding and complexity. Pinzon recommends consulting with a gynecological oncologist. She also orders a CA-125 test.
March 8, 2010 - CA - 125 test completed at LabCorp (results negative)
March 11, 2010 - first meeting at CINJ (Cancer Institute of New Jersey) with Dr. Alison Wagreich, who reviews MRI and orders a CT scan and endoscopy; she indicates that ongoing health issues could be caused by a necrotic fibroid leaking fluid into the abdomen. Because of my symptoms and the complexity of the ovarian cyst, she recommends surgery.
March 18, 2010 - CT Scan with and without contrast completed at University Radiology
April 1, 2010 - second meeting at CINJ with Dr. Wagreich; small new cyst discovered - CT revealed complex cyst is still potentially cancerous. Surgery is scheduled to remove cyst and fibroids and test for cancer - hysterectomy pre-authorized depending on the biopsy results.
April 2, 2010 - endoscopy performed by Dr. Kastuar (results mild esophagitis, mild gastritis, no bacteria, duodenal diverticulum)
April 5, 2010 - RWJ (Robert Wood Johnson Hospital ) Pre-Admission Testing (EKG, chest x-rays, blood work)
April 21, 2010 - laproscopic surgery preformed at RWJ: removal of fallopian tube, ovarian cyst, two fibroids, and uterine palap - cross section of cyst reveals it's non-cancerous. During the course of the surgery, a general surgeon is called in for a consult to look at my "deformed" appendix. Surgeon gets familial approval to remove appendix.
April 22, 2010 - released from RWJ after slight complications
April 27, 2010 - biopsy of the appendix reveals a 3cm carcinoid tumor - referred to Dr. Maloney Patel for right hemicolectomy surgery
April 28, 2010 - meeting with Dr. Maloney Patel to discuss surgery. She confirms that right hemicolectomy is the next course of action, and orders a CT and colonoscopy prior to surgery. Surgery is scheduled for June 8, 2010. Additionally, she explains that my case will be presented to the RWJ Tumor Board later this month.
May 5, 2010 - Dr. Maloney Patel presents my case to RWJ Tumor Board
May 6, 2010 - follow up appointment with Dr. Wagreich
May 17, 2010 - signed out pathology slides from RWJ
May 20, 2010 - appointment with Dr. G. Nash at Sloan-Kettering
May 28, 2010 - pre admission testing at RWJ
June 1, 2010 - follow up CT scan at University Radiology
June 7, 2010 - colonoscopy
June 8, 2010 - right hemicolectomy surgery - 3-5 days hospital recovery; 3-6 weeks outpatient recovery
Not Yet Scheduled
Octreoscan Test (if needed)
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.