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.