New Year, New Update Part 2

I was so happy to hear Dr. M's voice on the other line.

"Hi," I said, sighing as I sat down for a moment.

"Do you have a few minutes to talk?"

"Yes," I said as I got up and shut my office door with my foot.

"So I have your letter here," he said, paper rustling in the background. My letter, I assumed.

"I am so sorry. What an ordeal!" He sounded impassioned.

"Yes, yes it was. It was...awful."

"It sounds like it was a complete nightmare. I wish I had been there...but, uh, it already happened."

Whoa, what?! He wants to rescue me. I want him to rescue me. Cue mental image of me clad in a hospital gown, swooning in his arms with my neck scar, one hand on his bare chest, exposed underneath his white doctor's coat....

"Yeah," I said, kinda numb, while simultaneously trying to keep my eyes from popping out of their sockets over him wanting to rescue me. I was amazed because I had thought of him that night I was still in the hospital. It was 3am and I couldn't sleep. I had wished he had been there. Yes, because he is my knight, but really because of how careful and conscientious he is when he does anything. When he did my biopsy, he told me exactly what he was doing every step of the way. I also knew he wouldn't have allowed me to suffer the way that I did- he is a better person than that.

"Are you sure they knew you were conscious?"

"Yes! My eyes were open- I managed to ask for water- they knew."

"Have you brought this to anyone's attention? Like the nursing manager?"

"Yes, I have. I filed a grievance with the hospital. I just received the results of that yesterday."

"And what did they say?"

"They blamed me, which I expected. They said I might have ripped out my own IV , which is impossible! I heard them- they told me- it failed! Then they selectively used my medical records to prove their point while ignoring them on others!" I was shouting now, just furious.

"That's unfortunate," he replied, his voice having taken on its usual calm and controlled manner as he emotionally withdrew from our conversation. That is his line when you tell him something bad and he doesn't want to say anything else: "That's unfortunate." When I imploded in the exam room trying to tell him the story he said the same darn thing.

"So how are you feeling? Any more nightmares?"

"No, not in a few weeks. I'm just back to the usual normal, well, weird types of dreams."

He laughed, a hearty, sincere laugh. It made me smile. "Just like the rest of us! And how are you feeling about your neck?"

I chuckled, "Oh, fine, fine. I'm not that worried now."

He said my name, "You have just had cancer. It is totally normal and understandable that you are going to be worried about it coming back. It happens to everyone at some point."

"I know. Thanks...thanks for calling."

"Of course. I'll talk to you soon."

I hung up with him and was amazed at how much he seemed to care. About me.

My cynical side says he was like this on purpose so that I would remember how nice he was to me and wouldn't name him in any potential lawsuit.

I later replied back to the hospital's response to my grievance and I copied a bunch of people in power at the clinic and the hospital trying to draw attention to it to see if anyone would actually tell me anything.

In my letter back, I said how dare they blame me for their own incompetence, that the person doing the original investigation severely lacked in empathy for traumatized patients, their response was paternalistic and the investigation half-assed. I again repeated that all I wanted to know was what had happened. Lo and behold, I got someone's attention!

The director of risk management called me a couple of weeks later. Two days prior I had mailed complaints to the state medical board. She told me that no one remembers me so no one knows what happened but Dr. Z is very sorry. She said based on my medical records and what I told her, my IV probably failed when my arm became bent and "no one noticed until you were in recovery." Huh, that sure sounds like negligence to me! She was working hard, telling me that "I can understand how very frightening and confusing it must have been to wake up in that situation." Yeah, you think? She caught me on a mellow day and I didn't say much; I let her do most of the talking and let her think the case was closed.

I also mailed a letter to my surgeon right around this time telling him what HIS staff did to me and what HIS anesthesiologist did to me. He is a coward and never responded. I told him that as the surgeon, I expect him to be in charge. I am referred to him, admitted under his name and he is the one doing the procedure. I also told him that I expected him to be surrounded by a staff that was professional and well-trained and they most certainly were not. It felt good to say that!

The medical board complaints went official in September. The nightmares came back as soon as I put them in the mail. I had two more surgery ones (one in recovery where I was pleading, "please don't hurt me!") before they became just gruesomely violent: people shot in the head, my being raped by a male friend from high school. So much ugliness.

Just this last week I heard back from the medical board. There was not enough evidence to claim negligence or violation of standard of care. The letter said "anesthesia can be traumatizing even when everything is done right." I cannot resolve this statement as true. I just cannot. It makes no sense to me. The letter also said I was still intubated when I became conscious (not in my medical records) and this caused emergence delirium (not in my medical records) and the disruption of the IV line (not in my medical records!). These numerous omissions from my medical records, which were part of my original complaint- not mentioned. For that reason, I want to write back and say, "what about that?" It's just fishy to me, still. I don't know if I can keep going with this or if I should.

I had been doing well until I received that letter but it triggered my PTSD. I was in the grocery one night and everytime someone would come near me, I could feel my entire system go into overdrive. A woman walked up behind me and I nearly clubbed her in the face because I felt threatened. I had a panic attack in the office for no reason. I lost my appetite. I cried a lot.

Speaking of cowards, I want to make a point to say that I NEVER heard directly from Dr. Z, the anesthesiologist, about what happened. Even when it happened, my surgeon's assistant came and told me, not him. He has never apologized. That angers me. That makes me want to continue to push and push on this. There are ways to apologize without admitting any wrongdoing. Doing this has been shown to reduce lawsuits (Harvard has some wonderful info on this). It is like he hid this entire time: behind my surgeon, behind the clinic and the hospital, and now behind the medical board. C-O-W-A-R-D

I wanted to write another letter to Dr. M but I am afraid to. It almost feels inappropriate. I am supposed to see him for my one-year followup in a couple of months.

Awake and Slit Open?

Weird dream but I think it was real at one point.

Eyes closed, people talking, a murmur can't make it out exactly, beeping.  Trying to swallow but it feels weird, not painful but just weird.  I raised my left arm. I think I moved my head.  "Hang in, we're almost done."  I didn't open my eyes.  I wasn't scared or panicky.  

That is the most proof I have yet that I had awareness during the TT.

Now What?

I'm having a tough time today. I feel really sad and irritable. And alone.

I'm supposed to just bounce back and get on with life, right? Yipppeeee, I'm a cancer survivor and now I am going to kick life's ass and go out there and get everything I want!!! Right? I'm strong, and stoic, the hostess with the mostess.

I'm not.

I do have a different perspective on life now, what I am and what I have right now isn't what I want ultimately. I knew that before this happened, now I know I have to do something about it. But that isn't what I am struggling with today.

I'm just so alone. I like seeing my doctors because we are war buddies now, you know? Like Dr. M. I don't have to pretend that I don't have cancer because I'm there to talk about having cancer with him! Everyone else puts the kibbosh on the cancer talk. They'd rather talk about my father and how he had to have his foot amputated last weekend. You know it's bad when your friends choose to talk about an amputation over cancer! And if I talk about I am causing it or making it worse. I am just supposed to act like it's nothing. Cancer is a mindfuck, no matter where it is, what kind it is, or if your treatment is easy or not.

And "moving on?" I feel like something is still hanging over my head. Sure, Dr. M has deferred on RAI for now but that could change. I'm having blood tests at the end of June and then he might want to do it. Or when I see him next for an ultrasound, that could be it too. I'm just waiting for the hammer to fall!

Meanwhile, I am back at work. It is boring and not what I want to do with my life. I have looked at other jobs but I am afraid of losing my sick/vacation time. I have a big fear about that right now.

I have plans though. I am going back to school to try different classes to see what grabs me so I can start again. My current job does not. My history degree and failed attempt at getting an MA, do not. I'm not on this earth to be an office drone! Maybe I will be an archeologist...that's what I am going to try to be this month. Or a seismologist. I have always been fascinated by earthquakes. All I know is I want to be a scientist. I'm smart and inquistive enough. Someday my years fundraising at a large university will be looked back on like a bad dream as I do something cool elsewhere.

And I keep fantasizing about Dr. M. I love to try to figure people out, especially men I am attracted to because usually I am drawn to them for all the wrong reasons. I've never liked a doctor before so naturally I am assuming he is a raging pervert. What kind of person dedicates their lives to examining necks? He is still in my head and I admit I keep pouring water on that weed. I admit that it has no basis in reality but I hope in some way it is helping me through this.

I swore I would never be one of those people who think every little pain is cancer. I've had ovulation pain since Friday night that isn't going away and I am scared shitless because "OMG what if it is ovarian cancer??!" I have an appointment this afternoon to get looked at and NO, it is NOT with Dr. M!

As far as the post-thyroidectomy update, I am still swollen a bit and still in some pain on the right side. I am three weeks post-op. It seems like a long time now. The scar is raised, pink and obvious to me, but no one else seems to notice.

Post-Op

So I took myself off of the narcotics after two days at home because I was getting restless. I wanted to drive and I wanted to return to the gym. So I started taking ibuprofen instead, which dulled the pain but is also an anti-inflammatory. The scar isn't horrible. I felt better after I took the dressing off, to be honest.

Tuesday I saw Dr. S. He was thrilled with the healing thus far and said I could return to all of my normal activities. I thought this was funny because I don't even know what normal activities are anymore, and this hell has only been going on for a month! He also had the -da dum!- pathology report. The thyroid had only the one tumor, it was 1.4cm. The three lymph nodes were all clear. It was the best case. He told me to go see Dr. M. So I called and made an appointment for Thursday, today.

So today I got to see the Hottie of the Month, Dr. M. I am more in love with that man than I have been before. He is...mesmerizing. If only... Anyway, back to business. He said, "So you survived?" Then he started poking at my scar/scabby incision and said I was still swollen but that I looked to be healing well. I mentioned that I was still having some tingling but that it was sporadic so he tapped on my face but I didn't have any twitches. He told me I had the best possible outcome, that I am cured, and there is no cancer in my body. He is not sure I need radioiodine. But he needs to think about it. There are benefits to killing off all of my remaining thyroid tissue but then there are the risks of RAI. He made a mention of people who have RAI later having a higher rate of recurrence. This I did not know. He made an allusion to my reading, which I thought was interesting because he didn't see especially disapproving. My reading has bothered him in the past, to say the least. But that was "before." Before I lost weight, before I lost the bad attitude, before I noticed what a ridiculous hottie he is and essentially became putty in his hands. But I digress. My meds were increased and he gave me a lab slip to test my TSH and my thyroglobin. We had a long discussion about antibodies and I told him that I had them done on my first TSH test and they were elevated. He dug it up and said that I was absolutely right and that was going to make things more difficult at first.

Why do they suddenly respect my intelligence so much? It's very odd. Dr. M has been less
than friendly in the past and definitely not cool at all and now suddenly he's cool and friendly?
Even when he did my biopsy he was jumpy as hell. He is so sexy. Gah. Damn older male authority figures!!!

The Butterfly is Released

On Monday morning, April 28th I checked into the hospital.  Dr. S was running ahead of schedule so they took me back shortly after 10am.  I laid down, told someone I was scared (because I was) and they told me everything would be fine.  The anesthesiologist came in and introduced himself, asked me a bunch of questions and then started the line in my left arm.  He gave me something to relax me and then it all started.  The oxygen mask was put on my face and out I went.

I woke up nearly three hours later in excruciating pain.   I heard, "she woke up too fast."  And "the i.v. line was malfunctioning."  I was crying, trying to tell them how much pain I was in while they struggled with my I.V.  They took it out of my elbow and tried to put it in my hand.  They didn't work too well.  Then they put it in the other hand and that worked better.  I was still crying, ow, ow, ow, ow.    They finally were able to give me pain meds and anti-nausea meds and I started to feel a little better.   When they wheeled me away to go up to my room, they took me by the cafeteria and I almost lost my cookies from the smells.  UGH!!!

Then I was moved into my room where I was hooked up to a saline i.v.  My voice wasn't too bad but I was in good amount of pain still.  I just laid there mostly, people came to see me, I had flowers delivered.  They tried to get me to eat and it was a liquid diet.  It was crap and I sent it all back.  My throat was in SO much pain, the inside of my throat from the tube, I imagine.  I could barely swallow water it hurt so bad.   They kept giving me pain meds (tylenol with codeine and dillaudid) and I was just laying there.

I was so glad when everyone had to leave.  I watched Sex and the City on TBS and tried to sleep. The night nurse was very sweet and she would pop in and take my vitals, ask me about pain, etc.  I didn't sleep much and by morning I was over it all.  Dr. S came to see me and asked how I was.  He told me he didn't think the cancer had spread and that everything looked good.  Then his assistant came in and admitted they had problems in the recovery room.  Then she said I could go home.  My calcium was a little low but not enough for them to give me calcium or to keep me any longer.  One of my favorite coworkers called and I burst into tears just because I was so over it all.

Dr. M never came to see me, which was fine.  I felt and looked so crappy I would have been embarassed if he had come, anyway.  

I was so happy to get home but still in so much pain!!  I cried a lot.  I didn't have any help.  But I did sleep.  Glorious sleep!

A Girl Needs a Gun These Days

Rattlesnakes

jodie wears a hat although it hasn't rained for six days
she says a girl needs a gun these days
hey, on account of those rattlesnakes
on account of those rattlesnakes

she looks like eve marie saint
in on the waterfront
she reads simone de beauvoir
in her american circumstance

she's less than sure if her heart
has come to stay in san jose
and her neverborn child haunts her now
as she speeds down the freeway


as she tries her luck with the traffic police
out of boredom more than spite
she never finds no trouble, she tries too hard
she's oblivious despite herself

she looks like eve marie saint
in on the waterfront, she says
all she needs is therapy
all you need is love is all you need

jodie never sleeps 'cause there are always needles in the hay
she says a girl needs a gun these days
hey, on account of the rattlesnakes
hey, on account of the rattlesnakes

she looks like eve marie saint
in on the waterfront
she reads simone de beauvoir
in her american circumstance

her heart's like crazy paving
upside down and back to front, she says
ooh, it's so hard to love when
love was your great disappointment


I had my thyroidectomy on Monday, April 28th.  I've been home since Tuesday morning.  It has been an experience, to say the least.  This song, "Rattlesnakes" is one of my favorites ever.  It was brought to me by Ms. Tori  Amos who covered it on her 2001 album "Strange Little Girls."  If I could sing right now, this is what I would sing.  I have currently  lost all upper ranges of my voice but I have faith I will get them back.

I will write out my entire thyroidectomy story later.

Time for the Pre-Op Meltdown

I am home now from my pre-op and having another mental breakdown.

I sat there for 15 minutes waiting for my surgeon's clerical person to bring out my paperwork and while I was sitting there, I watched every single sick, disabled, old, 300 lb person walk by. It was depressing and really made me mad. How the HELL can I have cancer?? I have worked my ASS off to get healthy again after never being healthy in my life and now I am really ill? How the fuck did that work out? That's what is really getting to me. I have done all of the right things and I have cancer. I know it wasn't for not, I know I had to lose weight and still need to lose more but it is like I am being
punished for what I did in the past. Really? REALLY? I don't drink , I don't smoke, have
never done drugs, have had two sexual partners and now I have cancer and get to be poked
and tortured? Congratulations on all of your good decisions, you are FUCKED!

I don't want to do this. I'm to the point where I don't even believe that I have cancer. I think they are wrong. Dr. M is wrong, Dr. S is wrong, the pathologist is wrong. How can I be 28 years old, healthy and HAVE MOTHERFUCKING CANCER??!!

Last night/this morning I had my first nightmare since this whole mess started and it was obviously related. I was in the hospital and it was being surrounded by bad guys, like robbers or something, but they were all dressed as firemen. There was a doctor with me (woman, blonde) and we hid. It started to look like we were in the clear; I was trying to get out and this guy in a red shirt was helping me. It turned out he was one of the bad guys and pointed a gun at me, but he didn't shoot. He kept pointing it at me and I was running and I kept bracing for him to shoot me but it didn't happen, I just kept running and expecting and finally I made myself wake up.

Do You Have Authorization?

Authorization.  Your credit card, your debit card, your computer at work, your banking info all require this.  So does obtaining healthcare through your HMO!

Riddle me this:  how is it that when the doc wants to refer us to a specialist, the referral is authorized by the HMO within a day, but when surgery for cancer is required, it takes for-ever?

In my case, it is a combination of HMO stupidity and a "clerical error" from my surgeon's office.  It 
all started with the clerical error.  When Dr. S's office submitted the authorization request, they told me it would be done on an "urgent" basis and there would be an answer within three days. This was Tuesday April 8th.  Friday I dialed up the surgeon's office and they and they said the paperwork was submitted on Wednesday and that they had nothing to report.  I asked if it is ever helpful for me to call the 
insurance myself to light a fire under them and she said it does speed things up.  (Take note, my friends!) I called the HMO and spoke with a very nice woman who called the "authorizations department" and they said they would expedite it and there would be an answer on Monday.  It's Monday so I called the HMO and again they said they had nothing.  I was livid, so I did go off on the HMO rep (sorry, hun!) who discovered that it was not submitted on an emergency basis by Dr. S's office.  She then called his office and they fixed it and then the HMO rep told me to call back to his office to schedule.  The old authorization had an admittance date of May 10th.  What?!  You are going to tell me I basically have cancer than make me wait six weeks for treatment?  Come ON!   Apparently this has been moved up but I don't know what it is.  I called the office this afternoon, but it was after 4:30 and there was no answer so I left a message.

So here I am, having gone two weeks now since this all started and I am just swinging in the wind with no end in sight.  I'd like to express my sincere (sarcastic) gratitude to Dr. S's office for prolonging this.    I've had about three or four emotional meltdowns this afternoon.  I feel so helpless.  I am a "I will just do it myself" type of personality and to have to rely on others to even get the surgery scheduled is excruciating.  My thyroid is poisoning me and I want it OUT!  I feel utterly paralyzed by this. I can't make any plans to do anything because "Oh, I might not be able to drive because of my neck not being healed up enough." or "I might be too radioactive still to be near anyone."  But since I have  no surgery date and no treatment plan beyond having my thyroid removed "someday" than here I am, utterly and completely on hold.  If I at least had a surgery date and didn't have to go balls to the walls to get the damn thing authorized in the first place, maybe I would be able to relax a little bit more.  There would be less uncertainty.  But nothing has really changed since April 1st.