The Power of Doctors' Attitudes

THIS IS MY FIRST BLOG IN MY 30 DAYS OF SUMMER PROJECT ... I WILL BE POSTING 30 BLOG ENTRIES BEFORE SEPT 30th STAY TUNED ...

     During my last CT, I forgot to take off my St. Anthony's medal, which hangs around my neck 24/7. Rookie move for such a non-rookie. The MSK nurse was so kind that she insisted on taping it to my wrist for good luck. Guess it worked because my latest scans and blood tests indicate that everything is stable. Thank God.

     Many have asked me why I continue with Sloan Kettering when the general noid community repeatedly hasn't had great success with them. That nurse's personal touch of boosting my confidence during a nerve racking procedure is the MSK difference.

      In my follow-up appointment later that day, Dr. Nash was a little flabbergasted at my lack of questions. Usually there are all kinds of painful revolts going on in my body, and I look to him to lead a forward charge against a slippery foe. He asked me if I wanted to redo my 5-HIAA test, which was a little higher last time... I declined. My weight has stayed stable and my symptoms manageable. That's the best anyone can hope for with chronic conditions. If any new tumors emerge, I'd probably go back to Dana Farber in Boston for treatment anyway. For now, I'm sticking with MSK.

     Doctors' attitudes have so much power over recovery.

     For example, my recent MSK visit was NOTHING like my ER visit at Hackensack Hospital two summers ago. My body was obviously shutting down ...I lost 25 lbs in 6 weeks and I couldn't walk. I was having uncontrollable muscle spasms, and was in so much pain that my friends couldn't bear watching me, so they took me to the local ER for help. The first two nurses were awesome. Then I got this doctor who saw my physical condition and incorrectly deduced I was a junkie in withdrawal.

     This dumb woman thought she was going to "call my bluff." Little did she know I still had 300 ... Yes 300 pills of oxycodone at home that I never touched during recovery because I'm against drugs. After my hemicolectomy surgery, nurses would push my morphine button because I refused to push it myself. They kept telling me that if I was in pain I wouldn't heal as quickly - I didn't care. I'm terrified of drugs. I've lost friends to drugs, and know their power to destroy lives. So this ER doctor couldn't have been more wrong.

     I told her I had Carcinoid and she asked for MSK's number. 10 min later she returned - with her back to me she announced to my friends, who were holding my hand, that I was a liar. My cancer was cured and there was nothing wrong with me. She smiled at me when they gasped in disbelief.

     She didn't even talk to Rachel or Dr Nash - she had some random person look at my chart that showed no new tumor growth. In her opinion, that meant no cancer. Carcinoid is often chronic, and many sufferers never even have their tumors found at all. MSK and Dana Farber both have in my charts that they "can't rule out" Carcinoid syndrome due to symptoms and initial tumor size. Cancer Centers of Hackensack has a positive diagnosis of Carcinoid Syndrome, as does my GP and dermatologist (who recognized my tell tale flushing during one of my visits - and controls flushing, as well as the swelling in my legs and arms with Spironolactone... He has other carcinoid patients he treats similarly. It works. Click here for an article about Spirolactone and Carcinoid Syndrome). Carcinoid is complex, and this simpleton ER doctor put her ego trip over an obviously suffering patient.

     Thank goodness I had Dr. Woltering's cell number, which he makes available to the Carcinoid community because of the general lack of knowledge in the medical field about this rare disease. Dr. Woltering calmed my friends and myself down as we drove - me writhing in pain - to RWJ, where I was first diagnosed. RWJ took care of me - turns out that in addition to muscle spasms in my legs and arms, I was also having intestinal spasms - the equivalent of a massive charlie horse in your stomach - every 10 min. They too explained Carcinoid syndrome to my friends, and we were again on the right track with new medicine.

     After the visit to the Hackensack ER, I was seconds away from giving up and having others give up on me too. Who knows how much weaker I would have gotten if I had let that ER doctor get to me. Thousands of Carcinoid patients face this reality every day, which is why most carcinoid patients are treated 3-7 years for the wrong disease allowing for the cancer to spread.

     Luckily for me, my friends know of my drug phobia and that I always downplay my pain ... So instinctively they knew the ER doctor was full of shit. With Dr. Woltering's and RWJ's sound advice, we kept hunting for answers. 

     For all the Carcinoid patients and caregivers out there - be your own toughest advocate. Don't let doctors bully you. They estimate my cancer went unnoticed for 5-6 years ... Partly because I didn't push for help until the symptoms were unbareable. Stay connected, stay positive and stay strong.

Posted with Blogsy

Sloan Kettering Update

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof. - Barbara Kingsolver

October 2012
104 lbs

All summer, and and in the beginning of the fall, I kept loosing weight and muscle control. I got down to 104 lbs from 127 lbs in a matter of 6 weeks, and despite a 3,500 calorie diet I just couldn't manage to put any weight on. My coordination got worse - things would slip from my hands and my legs would buckle from under me.

We were worried: my doctor's, my family and my friends. My bones felt crushed in an invisible vice... it seemed hopeless until October, when I met my boyfriend Victor.

February 2013
113 lbs

As our relationship began to grow, slowly the weight starting coming back on. The body and the mind are inextricably linked; and the value of being loved and adored - and having someone to devote yourself to - cannot be underestimated in the fight against elusive illnesses. Over the past four months I've gained 11 lbs and recently had a CT scan at Sloan Kettering, which showed that my condition is stable.

Sloan CT - STABLE Feb 2013

We are still realistic about future complications. That's the problem with rare illnesses - whether my ongoing health issues are related to Carcinoid or not, as Dr. Nash said during my last visit, doctors are very good at saving lives but not always so good about improving the quality of life with chronic conditions. Above all, hope is what will in the end make the fight worthwhile.

Measuring New Year's Resolutions in Degrees

Traditionally, when my students come back from winter break, I take a brief hiatus from Shakespeare to discuss new year's resolutions.

When I ask my students, "who made new year's resolution for 2013?" - lots of hands go up. The class lists off some of the usual suspects, which I end up scribbling across the chalkboard... "lose weight, quit smoking, go to the gym etc"

Then, I boldly assert that "over 90% of new year's resolutions are doomed to fail - all because people don't know anything about etymology."

SIDE NOTE: Unfortunately, immediately after making this statement, one of my very smart and very quirky students became visibly concerned. I asked him what was wrong and he replied stone faced,"my resolution was to stay alive this year." Despite being in good health, he was dead serious (no pun intended). I reassured him that I was confident he would fall into the 10% success rate. My job is a lot of things, but it's never predictable.

After calming the fears of my one student, I explained the etymology of the word "resolution" - which comes from a Latin term resolutionem (nom. resolutio), roughly translating to "the process of reducing things into simpler forms."

Most people fail in changing their lives because they make things too complicated, or try to change too much.  They don't respect the etymology of the term and therefore end up right where they started prior to the stroke of midnight on New Year Eve.

Someone very wise once gave me sound resolution advice, which I now pass along to my students: try to just change your life by one degree... after all, whether or not water boils or freezes is only separated by one small degree of temperature difference. If one degree can completely change the form of water - imagine what it can do for your life.

Boiling point of water is 100°C or 212° F 

For example, instead of making a huge complex resolution like "I'll lose weight" - come up with a simple one degree change... a small part of the solution - like, "I'll add one vegetable to every weekday dinner." It's amazing how much you can alter your entire lifestyle by just changing one simple thing.

So what's my resolution? What's my one degree of change? To write a haiku every day. A simple 5-7-5 form just might be the reflective device I need to keep me moving in a healthy, creative direction. They don't need to be witty, or profound, or good - just an observation... a moment to look around at my life instead of run through it.

So here is my first one.

Facebook Haiku

cuz status update:

"Jersey Shore Boardwalk Ready

By 20-13"

UPDATE: March 2
My resolution turned out to be a little more than one degree.....

Haiku Abandonment 

Who knew haikus would 

be such an arduous task

to capture the day

"Pee in this Jug" and Other Medical Updates

My Friend Mike's Abstract Photo Interpretation of Our Series of Doctor Visits

I just had follow ups with my GI specialist (Dr. Chamberlain) at St. Barbabas Hospital, and with my Internal Medicine specialist (Dr. Totaro). Both Dr. Totaro and Dr. Chamberlain ran blood work.

GI Specialist

Dr. Chamberlain said that if the Valium and Bentyl combination was controlling my intestinal spasms - just stay on them (forever if need be). I sheepishly told him that I had been supplimenting Advil for the Valium because I wanted to be able to drive, but it really didn't help the pain. Dr. Chamberlain reassured me that it was ok to drive on the Valium, and that my body would adjust.

So far so good; the drugs have kept my abdominal pain at a minimum, and being able to drive again has given me most of my independence back. I take my med combo every 6-7 hours.

Internal Medicine Specialist 

When I initially met with Dr. Totaro and explained my symptoms, including thrush  - he said, "well when I hear someone say 'thrush', I immediately think HIV. We better test for that."

Now, I didn't really think there was any real risk of me having HIV (I've only had a few long term partners); but I grew up in the 1980s and watched two friends die from AIDS in the 90s. Sadly, one of my current friends is HIV positive... living with AIDS and HIV is a lonely, painful existence since patients are forced to deal with both the relentless symptoms as well as the social stigma of the disease.

Truth be told, there is nothing medically scarier for me than HIV, and hearing Dr. Totaro suggest it as a possibility was a little like watching Jaws 6 times in a row and then going for a midnight swim in the ocean.

Luckily, the HIV test was negative.

The blood work also eliminated Systematic Lupus, Lymphoma, and Pernicious Anemia. Yet, it didn't reveal a cause for my muscle atrophy, shaking, bone pain, and weight loss (20 lbs since May). Additionally, a comparison of my labs over the course of the last two years revealed that I have become steadily and increasingly more anemic - despite having regular iron levels and a normal B12 count. There is absolutely no explanation for the anemia, nor for some of the other blood abnormalities on the reports.

Dr. Totaro wants me to see a Hematologist. His thought is that if we can figure out what is causing the blood abnormalities and unexplainable anemia, we might be able to find the cause for my other symptoms and declining health.

5-HIAA Test Results - Carcinoid Syndrome

When we realized that it wasn't the cancer causing this latest - and most pressing - health decline, I admittedly began to ignore the Carcinoid. "Why chase two illusive dragons at once?" I thought - one was enough.

Except there was the infamous 5-HIAA test - first ordered this past June - which I still had yet to complete. The 5-HIAA test is a 24 hour urine collection in a bucket:

The 5-HIAA is standard in the Carcinoid world for helping diagnose malignancy and Carcinoid syndrome. It really should have been ordered over a year ago, but that's of little consequence now.

In order to limit the chance of a false positive on the test, I had to stop Valium and avoid certain foods (plums, pineapples, bananas, eggplant, tomatoes, avocados and walnuts) both prior to and during the collection - which I did dutifully.

I just got the test results: the normal range is 0.0-14.9 .. mine was flagged "high" at 17.3. It probably is nothing serious, but I can't be irresponsible either. Dr. Woltering suggested a Carcinoid specialist on Long Island whom I'll investigate.

So What It All Means....

In my first meeting with Dr. Totaro, he summarized my medical condition perfectly; he simply said, "You're a complicated little girl aren't you."

My body is at war with itself, but no one knows why.  There are objective signs, symptoms and labs that just make no medical sense. It's one doctor after another, and when I wake up it's a question of what hurts, and how much. Not having a "name" nor diagnosis for what's doing this to me is probably the most frustrating thing of all.

In Romeo and Juliet, Mercutio described his fatal wound to his best friend this way: "Tis not so deep as a well, nor so wide as a church door, but 'tis enough, 'twill serve."

I am grateful for the health I have. I am appreciative that I can sit in this beautiful French bistro and type this blog. But the psychological toll of feeling like an unwanted stranger in your own body 'tis enough, t'will serve as one of the hardest aspects of conquering my latest medical mystery. Over this past summer especially, I have discovered that my greatest defense against this foreign, unknown enemy is the love and support of my friends and family - who are always at the ready for whatever new medical bombshells get thrown my way.

Starting Over

My friend Mike took me for an epic bowl of seafood pasta at Biggies Clam Bar in NJ 
(My friends are making sure I keep my weight up ... Lost 15 lbs in last 2 months)

Firstly, thank you all so much for the emails and concern. I haven't been updating my blog because it seemed as if there was just too much to say...

I was in the hospital 5 times in July - four ER trips and one scheduled surgery. After the last blog, Rob (aka Batman) and I ended up going down to Robert Wood Johnson ER - and there we at least got a few answers.

As I was having a pain spike - the medical resident recognized it immediately:

"Have you ever had a charlie-horse?" The young doctor asked. (um ... I played competitive soccer so yea)

"Sure" I replied.

"Well you're having intestinal spasms - it's like a charlie-horse in your intestines" he explained.

While he was able to identify the issue he had no idea as to its cause.

He put me on Bentyl and Valium and the pain is under control. I saw a GI specialist who ordered more tests, and I see a top Internist tomorrow to try to figure out all the non-carcinoid related symptoms I've been having (pain, bruising, exhaustion, weight loss, weakness, low grade fevers, muscle spasms - I even developed thrush a couple weeks ago).

On top of all of this Gary - my partner of 5 years - and I separated, and I moved into my own studio in June. So I find myself back at the start - in all aspects if life.

I feel like an unwelcome visitor in my own body, and my new place doesn't feel like home yet - despite the heroic efforts of my amazing friends, and countless trips to IKEA.

On a positive note, my surgery (uterine polypectomy) went very well, and we are confident the biopsy will come back just fine. It's the mystery of why I'm still so sick that's the lurking ghost.

They estimate that I had Carcinoid Cancer for 5-6 years - the last year is when it broke through the appendix and was "accidentally" found during another surgery - and initially diagnosed as recurring appendicitis. I love looking at the MRI and CT reports that were done 2 weeks before they found the 3 cm tumor. Both reports say "appendix appears unremarkable". Luckily for me, my surgeon thought differently.

As Dr. Kulke (Carcinoid expert) told us - the "good news" is if my cancer has metastasized in my blood - which can't ever be ruled out - "it will eventually present itself" ie there will be more tumors.

But now there's a new unknown. How many years before this medical mystery is solved?

Carcinoid is rare, and nobody - not even doctors, really understand its true nature... But at least I had a name for what I thought was shutting my body down. Now, there's just more unanswered questions. I'm hoping tomorrow's doctor visit will bring us closer to some answers. I just need to keep moving forward.



- Posted using BlogPress from my iPhone

Evaluating New Doctors

US News and World Report recently published an article: 9 Signs You Should Fire Your Doctor. The article explains that an unhappy relationship with your doctor could damage your health care, and lists nine signs that you should look elsewhere for medical treatment:

1. You don't mesh. You and your doctor don't need to see eye to eye on everything, but it's helpful if you work well together.

2. He doesn't respect your time. You should never feel like he's "speed-doctoring" through an appointment.

3. He keeps you in the dark. A doctor should be open and thorough about both what tests he's ordering as well as the results.

4. He doesn't listen. It all comes down to communication and whether you feel like you're asking questions and they're not being answered.

5. The office staff is unprofessional. The receptionists are the link between you and the doctor.

6. You don't feel comfortable with him, or wonder about his competence. A sense of unease about his decisions and recommendations, even if you can't say exactly why, is also a perfectly legitimate reason for cutting the cord.

7. He doesn't coordinate with other doctors. Your primary care physician should be the quarterback of your health care team.

8. He's unreachable. A good doctor is available for follow-up questions and concerns.

9. He's rude or condescending. Your doctor should never trivialize your concerns as though they're not valid.

I've had some good doctors, and some really bad ones over the last two years. My dermatologist is an example of a fantastic doctor whom I meshed well with, who listened to me, and who carefully considered my symptoms in order to suggest an innovative approach to treatment. I found my dermatologist by first looking at the doctors listed in NJ Monthly's Top Doctor's edition and cross referencing the names with vitals.com, ratemds.com, and healthgrades.com - which are patient rating sites.

Unfortunately, my insurance didn't cover any of the endocrinologist recommendations by fellow 'noid patients, nor any of the endocrinologists listed in Top Doctors, nor any of the recommendations on the patient sites. Ultimately, I was forced to just go with someone on my insurance provider list. I already don't really like her receptionist... let's see how she does on the other "9 signs".

Boston MD (Dana-Farber Cancer Institute)

The trip to Dana-Farber Cancer Institute to see a carcinoid expert ended up being extraordinarily anti-climatic.

Dr. Kulke was nice enough, and smiled a lot. He had all my records and pathology slides. The appointment started with me patiently explaining my myriad of symptoms: heart problems, joint pain, exhaustion, flushing, rashes, fevers, night sweats, nausea, abdomen distention and pressure, leg swelling, and muscle weakness.

After I was done, Gary asked him: "Does any of that sound familiar?"
He just smiled and said, "Not really."
Followed by awkward silence.

Dr. Kulke then summarized his opinion: there is a very low probability the cancer has developed into the syndrome (good news), but he couldn't rule it out since some of my symptoms are consistent with the syndrome (ambivalent news). He advised an octreotide scan (two-day nuclear medicine test) along with a blood test for a NET tumor marker to investigate further. His only other suggestion was to get a good general practitioner. We scheduled the octreotide scan for next week, and a follow up appointment with him in September.

(I also asked him whether he knew anything about the black raspberry powder - he said he had heard some of his patients talk about it but wouldn't put much stock in it.)

Bottom line is: we didn't learn anything new. Everyone agrees that something is making me really sick, but both Dr. Nash and Dr. Kulke concur that there is only a slim probability that carcinoid syndrome is the cause. If the next tests come back negative for additional NET tumors, I'll have to see a slew of new specialists. It feels like deja vu all over again (6 years of misdiagnosis before carcinoid was found).

Don't get me wrong; I am very grateful that my cancer is most likely gone (or at least under control), but I am disheartened that there is no real plan of action to get me better. All I know is that I'm 37 - I am not diabetic nor overweight, I don't drink, smoke or do drugs, I exercise and eat organically - I should not feel like I'm stuck in the body of a 70 year old woman.

Gary and I decided that since the only thing Dr. Kulke offered was a test Dr. Nash didn't want to do - we would call Dr. Nash's office to see if he would change his mind and order the test to save us a trip back to Boston. Rachel (best nurse in the entire world) called today from Dr. Nash's office, and said he wanted me to meet with a different doctor at Sloan Kettering, Diane Reidy, who was well versed in carcinoid to discuss the merits of the new tests and my current condition. I have an appointment with her on September 9th.

Big question: do I cancel the octreotide scan in Boston? Since Dr. Nash doesn't believe in octreotide scans, I assume the new Sloan doctor doesn't either. I'm not exactly thrilled about being injected with radioactive material - but what if it lights up something that explains what's wrong with me? I guess it comes down to trust - and I trust Dr. Nash and Sloan Kettering; and I was really impressed with Dr. Reidy's CV - so most likely I'll say "thanks, but no thanks" to the pleasant Dr. Kulke and "let's get down to business" to Dr. Reidy.

One thing that Dr. Nash's nurse Rachel did say, however, is that I can't put off my cardiology appointment any longer - she's right. It's pretty scary when your heart stops and is so violent in restarting that you cough and shake like a madman; finding a good cardiologist just got top billing on my summer to-do list.

Update August 12th: After talking it over with Gary and my family, as well as other Carcinoid survivors, I decided to keep both appointments: the one in Boston for the octreotide scan and the one at Sloan-Kettering with Dr. Reidy. Until we find answers, we decided that we should see all the "experts" possible and do any non-invasive testing that might help shed some light on this thing.

Colonoscopy Results

Even though this was my 5th bowel prep in 15 months, all did not go exactly as planned.

I had major vomiting and fever issues, and lost 5.6 lbs between 4 pm Mon afternoon and 5:30 am Tues morning. In fact, I actually started blacking out right before my iv went in, which - thankfully - has never happened before.


The great news is that they got me stabilized, and my colonoscopy came back free from any further growths! We are really happy with the end results (no pun intended), and I'm relieved that I don't need another one until next year.

On a side note - Gary and I love my RWJ colorectal oncological surgeon who does my yearly tests (Dr. Maloney-Patel). She just recently had a baby girl, so we got her a little newborn outfit as a small token of our gratitude for her amazing ongoing care and support. (I must have looked a bit odd in the ambulatory surgery waiting room - wearing a cancer survivor shirt and two hospital id bracelettes, with a baby present on my lap...)

It turns out that I was Dr. Maloney-Patel's first patient back from maternity leave, and that her baby girl - Nina - shares my birthday (May 14th). Somehow the "cuteness" of this news overshadowed the miserableness of the prep, and I couldn't help but flash a big, toothy smile at the anesthesiologist, right before he put me under.

- Posted using BlogPress from my iPhone

ACOR.ORG

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.

Cardiologist

I saw a new cardiologist last week, who was less than impressive. Based on my experience, I put together a few tips for you budding heart doctors out there.

1. After a patient tells you that she had half of her colon removed because of a carcinoid tumor, your follow up question probably should not be, "so was it benign?"

2. Don't leave your patient alone for 20 min in the examining room while you google her disease.

3. Try to be specific when discussing test results, and avoid overgeneralized statements like: "I don't see anything very life threatening here."

4. Avoid starting sentences with: "well - you don't smell." (He wanted me to get fitted with a heart monitor halter before leaving the office - which would mean that I couldn't shower for 24-hrs).

5. Know how old your patient is, especially by the end of a 45-min appointment. (While flattering, the fact that he thought I was 26 years old, instead of 36, was a bit disconcerting.)

In addition to his bedside "quirks", my soon-to-be ex-cardiologist shared his initial findings based on my exam and echo test: irregularity (t-wave inversion) and insufficiency in the right ventricle with possible neurological disruption (causing heart rate to drop with exercise). He ordered a stress test, heart halter, and new echocardiogram. He also suggested that I get tested for lyme disease.

Initially, I scheduled the follow up tests for Thurs. - but decided to cancel them, since it's not a "very life threatening" condition; now I have time to find a different doctor before subjecting myself to more cardiac testing. In the meantime, I'll get the lyme disease test done - just to cross that possibility off the list.

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

Yale Medical School Graduation Address

A friend of mine sent me an email with a light blue hyper-link at the bottom. The email itself was short: "Do yourself a favor and watch this lecture. It won't take long... 15 minutes max. I promise it will inspire you. I would not send something that wouldn't!"

I deeply trust and respect this friend, so in an effort to try to nurture myself as much as I nurture my students, I closed my grade book, put down my red pen, and followed the link to a videotaped keynote address given at a medical conference in Southern California by Dr. Donald M. Berwick, President and CEO for the Institute for Healthcare Improvement (IHI).

First impressions - this guy was not going to win any "charisma awards" anytime soon ... he was monotone, circuitous, and flat; I began to doubt my friend and started eying the stack of senior essays neatly piled on my desk.

About six minutes into the video clip, Dr. Berwick finally got to the good stuff. He explained that for the conference keynote address he would actually be "redelivering" his graduation address to the Yale Medical School class of 2010. His whole demeanour changed; I sat back and gave him my attention.

Anyone who has been very ill, or loved someone who has been very ill, should watch this video. If you prefer to read it - you can find the text HERE. Personally, I found it more moving to hear Dr. Berwick deliver it himself (despite the bumpy start) which you can find HERE.

His remarks were largely focused around an email he got from a woman, Mrs. Gruzenski, who wrote to him advocating for an administrative change to hospital visiting hour policies. Her email explained the cruelty of being strictly limited to only seeing her husband, Dr. Gruzenski, to four times a day for 30 minutes during the last few days of his life in the ICU. A small portion of Dr. Berwick's remarks appear below:

"...We will have to imagine ourselves there. 'My husband and I loved each other very deeply,' she writes to me, 'and we wanted to share our last days and moments together. We both knew the gravity of his illness, and my husband wanted quality of life, not quantity.'

What might a husband and wife of 19 years, aware of the short time left together, wish to talk about - wish to do- in the last days? I don't know for Dr. and Mrs. Gruzenski. But, I do know for me.

I would talk about our children. I would talk about the best trip we ever took together, and even argue, smiling about whose idea it was. I would remember the black bear we met in a clearing in the Wrangell - St. Elias Range; the cabin at Assiniboine; the Jotenheim mountains of Norway. I would remember being lost in Kyoto and lost in Prague and lost on Mount Washington, and always found again. Mushroom soup at Cafe Budapest. And seeing Jessica born, and Ben, and Dan, and Becca.

We would have so much to talk about. So much. The nurses would pad in and out of the hospital room, checking i.v.s and measuring pulses and planning their dinners and weekends. And none of what the nurses and doctors did would matter to us at all; we wouldn't even notice them. We would know exactly who the visitors were - they, the doctors and nurses. They, they would be the visitors in this tiny corner of our whole lives together - they, not us. In the John Denver song it goes this way, '... and all the time that you're with me, we will be at home.'

Someone stole all of that from Dr. and Mrs. Gruzenski. A nameless someone. I suspect an unknowing someone. Someone who did not understand who was at home and who was the guest - who was the intruder. Someone who forgot about the black bear and the best mushroom soup we ever had - the jewels of shared experience that glimmer with meaning in our lives. Someone who put the i.v. first, and the soul second.

...In return for your years of learning and your dedication to a life of service and your willingness to take an oath to that duty, society will give you access and rights that it gives to no one else. Society will allow you to hear secrets from frightened human beings that they are too scared to tell anyone else. Society will permit you to use drugs and instruments that can do great harm as well as great good, and that in the hands of others would be weapons. Society will give you special titles and spaces of privilege, as if you were priests. Society will let you build walls and write rules.

And in that role, with that power, you will meet Dr. and Mrs. Gurzenski over, and over, and over again. You will meet them every day - every hour. They will be in disguise.

...Decide. You can read the rules. Or, you can say, 'Pardon me'. 'Pardon this unwelcome interruption in your lives. Thank you for inviting me to help. Thank you for letting me visit. I am your guest, and I know it. Now, please, Mrs. Gruzenski, Dr. Gruzenski, what may I do for you?'

...You must take your white coat off. You must recover, embrace, and treasure the memory of your shared, frail humanity - of the dignity in each and every soul. When you take off that white coat in the sacred presence of those for whom you will care - in the sacred presence of people just like you - when you take off that white coat, and, tower not over them, but join those you serve, you become a healer in a world of fear and fragmentation, an 'aching' world as your Chaplain put it this morning, that has never needed healing more."

________________________________________________________________

Thank you to all my doctors who were and continue to be truly part of my healing - and always put Gary and I before the cancer. Dr. Nash, Dr. Wagreich, Dr. Maloney Patel - thank you for taking your white coats off and helping me every step of the way in my fight against this disease, instead of forcing me into battle alone. I can never thank you enough.

ASCO Cancer Foundation's Calendar

It's a new year, and time for a new calendar.

Excitingly, this year, one calendar in particular has very special meaning for me. The American Society of Clinical Oncology (ASCO) Cancer Foundation is the leading professional organization representing physicians who care for people with cancer. Its mission is to improve cancer care and prevention.

Every year, the ASCO solicits artist submissions from cancer survivors and their families for their calendar: "Expressions of Hope". My mother, a talented painter, submitted a small oil painting of a little bird, which was selected for the month of April:

American Society of Clinical Oncology Calendar

Month of April: my mother's painting "The Song Bird" and a quote

My mom's quote reads: "While [Marlena's] most recent surgery was successful, the recovery was difficult with a slew of minor complications which wore down her spirit; my song bird seemed to have lost her voice. I reassured her that this latest challenge could be met... with grace and dignity."

Now, a reflection of my mother's strength and talent will not only enrich my life, but will also grace the walls of thousands of doctors who help patients find hope in the fight against cancer. Thanks mom. (For more of my mom's paintings, visit her online gallery.)

Splendour in the Grass - William Wordsworth

What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find,
Strength in what remains behind...

Click HERE to see the write up about my mom's painting on the Carcinoid Cancer Foundation's blog.

First In-Home Nurse Visit

VNACJ Nurses of the 1930s

The Visiting Nurse Association of Central Jersey (VNACJ) began with a meeting of volunteers on June 24, 1912 at Brookdale Farm, and has since evolved into one of the premier providers of community health care services.

Madeline, our VNACJ nurse, arrived today around 11:00 am. She was absolutely terrific, and couldn't have been nicer. In addition to redressing the wound, she answered some of our questions:

Q: If my wound was infected, why wasn't I prescribed antibiotics?
A: I did not have a fever which meant that the infection was most likely localized, and therefore the entire body did not need to be treated with antibiotics.

Q: What is the purpose of reopening the wound?
A: Usually wounds heal from the inside out, but in my case the wound healed in reverse: basically the top external portion healed over before I was internally healed - creating a "pocket" where infections can occur. The point of the packing is to keep the wound open so that the inside can heal fully.

Q: How will this wound eventually close - do they just sew it up?
A: It's unlikely that I will need stitches. Most likely, as the wound heals, the doctor will decrease the amount of packing, until eventually all of the packing will be removed. The entire wound will then be covered by a bandage, and the body should naturally heal the wound close.

Since Gary did such a great job redressing the wound, she feels that a nurse is not needed every day (and we agree). I am scheduled to receive two more in-home visits next week: Monday and Friday. She really provided some peace of mind, and Gary and I are much more confident that we can tackle this latest hurdle.

Dr. Garrett Nash & Sloan-Kettering: Going the Extra Mile

One thing that sets Sloan-Kettering Cancer Center apart from other hospitals is its focus on both a patient's physical and spiritual well being.

For example, the day after my surgery, a eucharistic minister came to my bedside and asked me if I wanted to receive holy communion. (I had identified myself as Catholic on my pre-admission forms.) I immediately felt stronger and calmer after receiving the Sacrament, and much more willing to face the day's challenges.

In addition to being sensitive to religious needs, Sloan-Kettering also fosters a sense of community and hope among its patients. Every nurse, doctor, and staff member who walked into my room had a smile on their face and cracked jokes. This jovial attitude spilled over into the hallways, where patients would cheer each other on as we did our required daily "laps" around the floor. I felt like I was completing my first marathon instead of just shuffling a few feet, holding onto my IV pole for support.

The 15th floor (my floor) is home to the Gastric Mixed Tumor/Colorectal Cancer Unit as well as the hospital's renowned recreation room, which was described by the NY Times as "something of a cancer patient’s corner bar, minus the booze". The recreation room has daily activities (see my previous blog posts about the Ritz-Carlton pastry chef demonstration and "look good feel better" program) as well as a pool table, library, and outdoor patio. The purpose of the room is to limit "down time" - when a cancer patient's mind is likely to drift to places that are dark and defeating.

My doctor, Garrett Nash, also demonstrated the difference in Sloan-Kettering's approach to patient care. Case in point, as soon as Dr. Nash found out my pathology results (Thursday night) he called me at the hospital. He could have easily waited until morning rounds to tell me the good news, but he went out of his way to ease my mind.

As if that weren't enough, Dr. Nash visited me on Saturday, his day off, in his running gear. It turns out that he runs to raise money for cancer research! He is currently training for the NYC Marathon in November as a member of Fred's Team, which is a program that raises money to support crucial research at MSKCC, "bringing us closer to a world without cancer - one mile at a time." [Click HERE to visit Dr. Nash's donor page and support Fred's Team.]
Sloan-Kettering truly embodies Francis Peabody's famous quote: "The secret of the care of the patient is in caring for the patient".

Nursing's BEST: Sloan-Kettering

I was on the 15th floor - and the nurses on the floor (MSKCC’s Gastric Mixed Tumor/Colorectal Cancer Unit) were named ADVANCE's 2008 Best Nursing Team in NY/NJ.

The personal care and attention was nothing short of extraordinary.

Read the full article here.

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

Dr. Garrett M. Nash, MD, MPH at Sloan-Kettering

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.

Education
MD, Columbia University College of Physicians and Surgeons; MPH, Harvard School of Public Health

Residencies
University of Massachusetts Medical Center; NewYork-Presbyterian Hospital/Weill Cornell Medical Center

Fellowships
NewYork-Presbyterian Hospital/Columbia and Cornell; Memorial Sloan-Kettering Cancer Center

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.