Latest Lab Results

After a while, you go crazy looking at numbers: lab results, survival rates, syndrome-symptom percentages; yet none of these numbers ever unlock any absolutes. When you have a rare disease, it's largely guesswork - and you just have to hope that your doctor is a good guesser.

Because the doctors are really shooting in the dark a lot of the time with carcinoid cancer, I've learned that it's important to become an active participant in your own medical care, rather than a passive recipient. This is why I get copies of EVERYTHING and spend the time going over the reports - to help me better understand and see my condition more clearly. I know my latest lab tests are only guideposts and not definitive answers, but right now I'll take any guidance I can get.

Lab Results

There were only 3 minor "flags" on my recent lab work up: low hemoglobin, low MCHC, and high neutrophils. None of these "abnormal" results are off the charts - so I'm not going to read too much into the results, but I am not going to ignore them either. I think more useful than the raw numbers may be to compare my results from this last set of blood work to my 2/19/10 lab results (pre-tumor removal).

Low Hemoglobin Count

Hemoglobin measures the concentration of the oxygen in our blood. Low hemoglobin numbers can be caused by a variety of things including anemia, thyroid problems, an enlarged spleen or cancer. Generally, it's primary cause is anemia. It's important to note, however, that some healthy women have naturally low hemoglobin counts - so a slightly lower hemoglobin count may mean absolutely nothing at all. "Low hemoglobin" is anything lower than 12 grams per deciliter for women. (Mayo Clinic)

2/19/10: hemoglobin 11.6 g/dl
3/8/11: hemoglobin 10.7 g/dl

Low MCHC Count

MCHC stands for "mean corpuscular hemoglobin concentration), and it measures the amount of hemoglobin in red blood cells, and uses both HGB and HCT to calculate its range. Low levels of MCHC indicate anemia. "Normal MCHC" is anything in the range of 32.0-36.0%

2/19/10: MCHC 31.9%
3/8/11: MCHC 31.4%

High Neutrophils Count

Neutrophils are made in the bone marrow, and are mature white blood cells. An abnormally high concentration of neutrophils can be caused by an acute bacterial infection, inflammatory disease, or spread of cancer in the body."Normal neutrophils" is anything in the range 40-74

2/19/10: neutrophils 64
3/8/11: neutrophils 76

So in total - nothing earth shattering or ground breaking; just a few more little pieces to a massive puzzle.

* On a positive note, since Gary and I changed our eating habits, we both lowered our LDL cholesterol from "high" to "ideal" levels.

Carcinoid Cancer: Recurrence Rates

I just read an article from the Annals of Surgery entitled "Carcinoid Tumors of the Appendix" that estimates there is an 80% chance that I will have a tumor recurrence since my initial Carcinoid tumor was bigger than 2 cm. The article only confirms what I have been hearing for the last few weeks from my friends in the Carcinoid community. I found several more reputable medical journals that all have the same statistic, so it's safe to say that 80% is a pretty good estimate of what I'm up against.**

I know that percentages are just calculated odds, and some people beat them. It's a little deflating though to think that my first fight with Cancer may have only been the beginning. I know that I have the best doctors in the world, and the most supportive friends and family anyone could ask for... but sometimes, I feel a little rushed to hit the "Rewind" button and just get back to the way things were before my diagnosis.

I never want to alarm people or cause problems, so I pretend a lot. I pretend my joints don't hurt so badly that sometimes (like today) I can barely walk or move. I pretend my fevers are gone, and I'm sleeping well. I pretend I don't need nausea pills anymore, and all my "plumbing" is humming like a well oiled machine. I pretend I'm not worried that I still may be dying. Dr. Nash has made it clear that there is really nothing to do but wait - nothing will relieve the lingering aches and pains and anxiety; no magic pill or treatment can erase all that's happened to my body as a result of the Cancer - so what else is there to do but pretend that everything is fine? After all, isn't hope just another form of pretending?

I know that I should be celebrating the gift of a second chance, but to tell you the truth I sort of feel like a wimpy kid with a shiny new bike who has to ride home past the neighborhood bully everyday. It would be so nice if the bully just went on a family vacation for a while - at least until I got a little faster, a little stronger, and could outrun him. I guess if I do have to face him, I should remember to "fight like a girl" - and win.


** UPDATE: After I posted this, my sister (who is in medical school) reviewed the medical literature and said that the statistics were not given enough context to support a generalized 80% recurrence rate - which is great news! I have tried to find something concrete about recurrence rates without success... If anyone has good resources on recurrences of Carcinoid tumors of the appendix (greater than 2cm) following a right hemicolectomy - please forward them!

** UPDATE: I saw Dr. Nash in April 2011, and he estimates my recurrence rate to be as low as 10%

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!!!

Pick-Up at Pathology

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

Surgery Notes and Pathology

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."