Wednesday, March 30, 2011
I have an echocardiogram scheduled for tomorrow, to check my heart valves. The good news is that I have low blood pressure - the weird thing is that ever since my surgery, my heart rate actually DROPS with strenuous exercise (riddle me that one Batman).
I am sure my echo will be fine. I've had a bunch of EKGs, which have come out alright with the exception of a "flipped" heart beat, and both Dr. Nash and my general practitioner told me not to worry about the dropping heart rate. Also, I learned that the relationship between blood pressure and heart rate is a dynamic one - meaning they don't always rise and fall together.
I guess tomorrow's echo results will just add a few more pieces of information to my puzzle.
Blood Pressure History
March 7th: 105/60
Heart Rate Averages (post-surgery)
Average Resting Heart Rate: 84-90
Resting Heart Rate on March 7th: 72
Average Heart Rate Moderate Exercise: 120-132
Average Heart Rate Strenuous Exercise: 66-72
Sunday, March 27, 2011
When I was first diagnosed with cancer, one of my students shyly asked, "Ms. Johnston, does cancer hurt?"
I could see the worry in her expression, and I gave her the only answer I could: "No, it doesn't hurt at all - I'm just a little tired, but I'm not in any pain."
That, was a lie.
Cancer hurts - not only does it wage a brutally physical and psychological war against the patient, but it injurers the patient's friends and family - innocent bystanders - along the way. One of the most painful things about having cancer is watching the people around you, whom you love with all your heart, become deathly afraid of losing you... sometimes they look at you so intensely, so desperately, that it's almost as if they are searching your gaze in hopes of uncovering some secret expiration date stamped on your pupils.
I don't know if my increasing pain and decreasing health is related to the carcinoid cancer or something totally different; what I do know is this - my body is in the middle of a mutiny, and my friends and family are helplessly watching as this syndrome, or illness, or cancer (whatever it is) is conspiring and rebelling against me. In the end, the fight is mine to win.
Thursday, March 24, 2011
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.
3/8/11: hemoglobin 10.7 g/dl
3/8/11: MCHC 31.4%
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.
Wednesday, March 23, 2011
* history of carcinoid tumor
* fevers and night sweats
* joint pain and stiffness in hips, fingers, toes, ankles, knees, lower-back
* muscle weakness and aching
* radiating, burning pain in shins, thighs, arms
* extreme fatigue and shortness of breath
* abdomen discomfort, cramping, pressure, bloating
* nausea and vomiting (infrequent)
* hot rash over face and chest that comes and goes
* heart palpitations
* low blood pressure
* heart rate that drops with exercise
I just finished a series of RX Augmentin for a lingering ear and throat infection...but it did not have any affect on my other symptoms.
So here's the million dollar question - is it possible that the collection of symptoms could be a result of a syndrome and not a disease? The difference between the two is a little confusing.
A "disease" is a term that indicates a health condition that has a clearly defined reason behind it, while a "syndrome" is a kind of medical mystery - and can produce a number of symptoms without an identifiable cause. To muddy the waters even more, certain diseases can cause specific syndromes.
Carciniod cancer is an extremely rare disease, and a very small percentage of carcinoid cancer patients develop carcinoid syndrome, which have the following symptoms (% of patients affected)
Heart Valve Lesions (53%)
Peripheral Edema (19%)
Out of all of those symptoms, I only have flushing (see above), cramping, and arthritis. In a few days, I'll have an echocardiogram to determine if I have heart valve lesions. I don't think I have carcinoid syndrome because usually if you have a midgut carciniod - the liver filters out the excess seritonine, which is the cause of the syndrome. If I do have the syndrome, that means that the carcinoid cancer has metastisized to my liver.
One of the things I don't understand is why none of my doctors have ordered a 5-HIAA test, which is used to determine if the carcinoid cancer has metastasized to the liver, most likely causing the syndrome. I guess that's another test I'll have to ask Dr. Nash about when I see him for my CT scan in April.
Monday, March 21, 2011
"Seen a lot of movements since the 60s, but no movement is more powerful than the one you experience when you're preparing for a colonoscopy, because colonoscopies save lives. Talk to your doctor. CBS cares."
If you've ever had to do a "bowel prep" for a colonoscopy or similar procedure, I'm sure you'll agree that no truer words have ever been spoken.
Wednesday, March 9, 2011
Before I became a teacher, I made six figures as an attorney at one of the biggest and most prestigious law firms in the country. I was good at my job, and I didn't leave because of the great allure of summers off or getting out at 3pm (which never happens)* .... I left the firm for the same reason every good high school teacher joins this thankless profession - because I felt an overwhelming need to pursue a career where I could make a difference, a real difference, in the lives of teens.
*News Flash for all you doubting-Thomases out there: I work MORE hours as a teacher than I did as a third-year associate at the law firm, only I don't get a fancy car, or an expense account, or trial bonuses. Instead, I get something much better - my kids; there is no better place than with my students, celebrating their successes.
Now, amidst this recent "teacher-bashing" public dialogue, I find comfort of purpose in McCarthy's words:
"At fifteen, sixteen, and seventeen, the ages of everyone in the class, teenagers are shopping around for ideals to live by. This week I was reading a bit of Mother Teresa, whose Sisters of Charity have three convents in Washington and whom I interviewed when she opened the last one in the south-east part of the city. I ask a student to read aloud a few of nun's lines [from "Anyway"] that might help everyone, me included...to be the idealists we are meant to be."
People are unreasonable, illogical, and self-centered.
Love them anyway.
If you do good, people may accuse you of selfish motives.
Do good anyway.
If you are successful, you may win false friends and true enemies.
The good you do today may be forgotten tomorrow.
Do good anyway.
Honesty and openness may make you vulnerable.
Be honest and open anyway.
What you spend years building may be destroyed overnight.
People who really want help may attack you if you help them.
Help them anyway.
You see, in the final analysis, it is between you and God.
It was never between you and them anyway.
The event always begins with a "survivors lap" - and as I circle the PC track, I'll be sporting as many zebra-striped accessories as possible in solidarity with the carcinoid community.
Below is an overview of the event from the American Cancer Society's website:
"The American Cancer Society Relay For Life is a life-changing event that gives everyone in communities across the globe a chance to celebrate the lives of people who have battled cancer, remember loved ones lost, and fight back against the disease. At Relay, teams of people camp out at a local high school, park, or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Because cancer never sleeps, Relays are overnight events up to 24 hours in length.
Although every Relay For Life is different, there are certain traditions at all Relays, no matter where they are held. These traditions help participants celebrate, remember, and fight back.Celebrate - The Survivors Lap
Relay starts with a Survivors Lap an inspirational time when survivors are invited to circle the track together and help everyone celebrate the victories we’ve achieved over cancer. The Survivors Lap is an emotional example of how Relay participants are creating a world with more birthdays like those of each individual on the track.
Remember - The Luminaria Ceremony
After dark, we honor people who have been touched by cancer and remember loved ones lost to the disease during the Luminaria Ceremony. Candles are lit inside bags filled with sand, each one bearing the name of a person touched by cancer, and participants often walk a lap in silence.
Fight Back - The Fight Back Ceremony
Last, there is a Fight Back Ceremony, where we make a personal commitment to save lives by taking up the fight against cancer."
Monday, March 7, 2011
The caller identified herself as "Liz" from Governor Christie's office, and politely requested that I return her call at my earliest convenience. I immediately called back, and to my great surprise - Liz picked up on the second ring.
She explained that she was following up on my email, asking the Governor to declare November 10th - NET Cancer Awareness Day in NJ. (See my Jan 21st blog post: "Ask Governor Chris Christie (NJ) to Support NET and Carcinoid Cancer Awareness")
She asked me if I could send her some proposed language for a Proclamation ... no promises of course; she was just looking into the matter. Below is the email I sent to her. I am excited at the possibility of Governor Christie joining the fight against NET cancers.
It was a pleasure speaking with you today about the possibility of Governor Chris Christie becoming the 17th United States governor to join the global campaign supporting neuroendocrine tumor (NET) cancer awareness.
The first Worldwide NET Cancer Awareness Day (WNCAD) was held on November 10, 2010, and was an international movement coordinated by carcinoid and neuroendocrine tumor cancer advocacy groups around the world, including: Australia, Bulgaria, Canada, Colombia, Czech Republic, Denmark, Germany, Japan, Netherlands, Norway, Poland, Singapore, Sweden, United Kingdom and United States. As part of the campaign, a Proclamation urging NET cancer awareness was created, and has since been signed online by more than 4,600 people on six continents, and in person by thousands more. (Read more about the campaign at www.netcancerday.org). I have attached a copy of the WNCAD Proclamation for your review. There are already plans for a second international WNCAD on November 10, 2011.
I was diagnosed with carcinoid cancer in April of 2010, and would have died if my neuroendocrine tumor wasn't "accidently" found during another surgery. My cancer went undiagnosed for at least 5 years - allowing it to metastasize - in large part because of the lack of education in the medical community about neuroendocrine tumors. As the WNCAD slogan states: "if you don't suspect it, you can't detect it." Therefore, I urge Governor Christie to issue a Proclamation declaring November 10th as NET Cancer Awareness Day in the State of New Jersey, or join Governor Deval Patrick of Massachusetts in declaring the entire month of November as NET Cancer Awareness Month.
Please do not hesitate to contact me if I can be of any further assistance. I'd appreciate it if you could confirm receipt of this email and the attachment - just to ensure I have the correct email address.
Saturday, March 5, 2011
know what you want before you come in. Why? There are nearly 900 combinations Kenny's tiny kitchen turns out (click here for the menu), and patience isn't exactly what this restaurant is known for.
A word of caution: don't even think about coming in as a party of 5 and pretending to be a party of 3 casually meeting up with a party of 2 - you math-sly tricksters aren't fooling anyone...certainly not Kenny. (For more on the "rules" see "Don't Mention It" in The New Yorker or "Flipping the Bird" in The New York Times).
So why is there a cult following for this tiny place, in the middle of a small market, where it's highly probable that you'll be cursed-out by the unpredictably cantankerous chef-owner? Simple - for the same reason Jerry, George, Kramer, and Elaine (from the show Seinfeld) fearfully followed the the Soup Nazi's outrageous demands ... the food is that darn good.
After reviewing the menu, watching the documentary, and going over the rules during the car ride into the city - the four of us felt somewhat prepared to face Kenny on Sunday morning. We made sure to arrive before the market opened, so we only had to wait for about an hour before getting seated in the "bar area" - right next to Kenny himself, who sat perched on a lone chair where he could simultaneously watch and comment on the kitchen and his patrons. Needless to say, we were nervous. Luckily, Kenny seemed to be in a good mood, and only lobbed a few f-bombs here and there at his staff.
Any trepidation about the Shopsins experience, however, melted away with my first bite of mac 'n' cheese pancakes. Let me repeat that: MAC 'N' CHEESE PANCAKES. Brilliant. To learn how Kenny cooks up these little fluffy, cheesy disks of perfection (and to get a taste of Kenny's character) watch: BATTER UP.
Friday, March 4, 2011
First Time Flying ...
Virgin America Airlines
In an Exit Isle
On Flight from JFK to SFO
Golden Gate Bridge
City Lights Bookstore
The "Real" Ghiradelli (Disney World doesn't count!)
First Time Eating...
Ethnic Food: Vietnamese, Indian
Sweets: Kara's Cupcakes, Sees Candy, Chocolate-Banana Bread Pudding, Sharffenburger Chocolate, Julian Pie
Coffee: Blue Bottle, Pete's Coffee
Fast Food: In and Out Burger
Dinner at Ana Mandara