Sunday, July 8, 2012

Egads! To the ER Batman

"You never know how strong you are until 
being strong is the only choice you have."

These last five days have been rather trying for me. I have spent about fifteen hours in a local hospital for what they call "pain management"- which is an oxymoron.

This all started Monday night. After visiting a friend for a dinner party, I was struck with severe abdominal pain. I tried like always to do it on my own and tough it out, but around 7 pm the next day I realized I needed help.

My two best friends - the best guys you could ever ask for- rushed to my aid like Batman and Robin (with Robin throwing everything he could find, including a Yankees jersey, into an emergency overnight bag).

My first visit to the ER went as smoothly as a warm barium shake before a CT scan. Of course the first question was,"on a scale from 1-10 what level is your pain at?" In my mind I visualized those stupid smiley faces that progressively become more contorted with each level. Frankly jabbing the nurse in the eye with her pen would have been a better description of my pain.

Confidently I replied "9ish."

They started an I.V. line, and the night nurse Jess proceeded to tell me "you must be one of the most stubborn people to let the pain get this bad." It took three shots of increasingly stronger pain medication to bring me to a comfortable level. I was then a victim of the infamous doctor shift change leading me to leave without pain medication that were recommended by doctor #1.

Since I despise pain medication I knew I had squirreled away over 100 pain pills at my house, so we didn't wait around for doctor #2 to catch the mistake. (After all it was already 4:45 am.)

Thankfully, Batman and Robin's secret underground lair  -AKA shity apartment- was just around the corner from the hospital.

My "Heros" took turns watching over me and pumping me full of pain pills to keep my "smiley face scale" as far away from "9ish" as possible.

The next two days were better, but only marginally. My pain level had moved down to a four and spiking to a six, but episodes were further apart. My shining moment was when the boys made me Pastina with butter and salt, my favorite comfort food from my childhood.

Wendsday night things got bad again. At about midnight, we as a team sat down to discuss another trip to the hospital. Against my vehement protests, and a three year old type tantrum (ending with Batman carrying me over his shoulder back to the Batcave) we set off to the hospital...again.

This time no I.V. and fairly little concern for my "pain management." However Jess, my first nurse, did show how amazing people can be by coming over and checking in on my well being both mentally and physical. Again I was discharged without pain medication by a doctor with the bedside manner of a boar.

Back to the Batcave!!!

The next two days were filled with more pain pills and less episodes. I began to eat again, but I began to get more pain and soreness in my extremities. (The upside though - apparently the 4th of July fireworks look much better on OxyContin.)

Last night I woke up feeling my normal pain and a new puzzling sensation that felt like battery acid was flowing through my arm. After a stage of sheer panic, I began applying ice to ease the burning - but to no avail.

So I did what I thought was the responsible thing: I activated the Batphone, drove myself to the Batcave, Batman climbed in, and we drove to the ER for the third time.

Upon entry I had an overwhelming feeling that this was going to be a "prototypical ER trip" for a Zebra. I was not givin an IV and was stowed away in a corner of the ER. My nurse instantly sent over the doctor after we deluged her with the recent happenings. From the doctors first moronic comment "why are you crying? I don't understand" I began to shut down mentally.

I explained my symptoms and my last two ER visits, and of course said I had Carcinoid Cancer. She took Dr. Nash's number at Sloan Kettering and abruptly left. Ten minutes later she came back with the tone of an annoyed school principal. "I talked to a nurse who had your records. You do not have cancer. You had a 3cm tumor that was removed and there is no more cancer in your body..." Even at my interjections she raised her volume and spoke over me.

Since she denied me the opportunity to breath no less explain my medical history, I'll say what she should have heard here.…

I know how big my tumor was, and I am grateful they haven't found additional tumors since my hemicolectomy.…however, there is an ongoing dispute amongst Sloan doctors and other members of my medical team whether or not I have Carcinoid Syndrome, which would mean distant METS without local lymph spread. (For details on this topic just hit "Carcinoid" on my label section)

I was not going to explain the complexity of staging and diagnosis of a rare cancer to a woman who was practically screaming at me that she "knew the real story." Bottom line I was writhing in pain which she completly dismissed and deemed as grounds for discharge.

After a shot in my arm and a warning I was no longer able to receive treatment for "pain" at the ER, Batman carried me to the car because of my inability to walk.

Now I had no idea whether or not it was the Carcinoid but since it presents such a "weird constellation" of symptoms it seemed like it might be a viable cause of the pain. So I called Doctor Woltering in LA to discuss whether or not the Carcinoid syndrome could be the cause of this latest setback.

For non Zebras out there, Woltering is one of the only experts in Carcinoid and gives his cell phone to all Carcinoid patients. He picked up on the second ring.

After a short discussion, he affirmed that the Carcinoid Syndrom was NOT the cause of this pain. I believe him. (He also rattled off the list of tests and treatments I should consider at other oncological centers.)

So where does that leave me and my Caped Crusaders?

At the start of a new and exciting episode. You would think I would be happy that it's most likely not related to the Carcinoid, but for anyone who has gone through dealing with a rare disease, the thought of hunting down a new, mysterious villain seemed crippling.

Sitting here now, however, I realize that even though these last days have been full of pain and frustration, knowing I have my dynamic duo at my side and a supportive cyber Carcinoid community to rely on - I feel like I have the will to carry on, and the fight in me to keep moving forward... even when I can't reach my Batsignal.

*Special thanks to Batman for typing this all for me.


  1. I'm sorry that you are feeling so out of sorts. It sounds very difficult. Do you think this is something your primary care physician can work with you on? Unfortunately the ER only has an obligation for life threatening emergencies, so once it is established you have a chronic condition, there isn't much they can do.

    Pain management is an extremely difficult business for many reasons. I think getting the firm support of a primary care physician who can organize the problem solving search if that is required with specialists, and a counselor to help with the process would be really beneficial.

    Can you get some sessions in with that amazing yoga instructor you talked about last year? Have a massage? Anything to help, meanwhile? Did anything precede these episodes when you were in Florida?

  2. My husband has pancreatic neuro w/mets, I am an RN. I HATE when the medical community tells people they don't have pain or are so COLD to people who have pain. NOBODY knows what you are feeling except YOU! You need to start getting MAD when someone tries to treat you in such a disrespectful, unprofessional manner! (just a tip from my hubby)

  3. I was really sorry to read what happened to you in Florida.
    Don't get discouraged! Go back to your doctors, pursue answers.
    Thinking of you.
    Annie Q.

  4. Ms. Johnston I'm sorry to read all of this. I hope you start feeling better very, very soon.