Finding Perspective

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.

Going Public

My first surgery, on April 21, 2010, was a success; the biopsy of my ovarian cyst showed no signs of ovarian cancer, and the necrotic fibroid that was pressing on my bladder was successfully removed. There was just one little snag - my appendix looked strange. They removed it as a precaution and did a biopsy. Just as I was getting ready to go back to school and get my life back to normal, I got a call from my oncologist - the biopsy of my appendix revealed a Carcinoid tumor; in short, I had cancer.

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.

My family and I can't thank everyone enough. The outpouring of support, prayers and love has been incredible - I am truly blessed to be surrounded by such wonderful people. If you'd like to continue supporting me in this journey, simply press "follow" on the right hand side of the blog. For people new to this format, scroll down to the bottom of the page; posts are arranged from oldest (bottom) to newest (top). Feel free to share this blog with as many folks as you want - part if its purpose is also to promote awareness.

Thank you again for opening your hearts to me - I won't let you guys down!

Time Line for a Cure

Time Line
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

FUTURE SCHEDULE

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)

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.