The Glowing Butterfly

2011-01-30T22:36:00.000-08:00

For those looking for "courtwhit exhibitionism" keep looking! Yes I have a counter on here and yes I can see what you are searching for. Mark.

If You Have Something to Say

2010-04-27T08:30:00.000-07:00

I keep getting semi-mysterious hits on this blog from Vista/Fallbrook as if someone who knew the old me ten years ago (judging by the keywords being used) is looking for dirt of some kind. One thing I learned from cancer is that if you have something to say, just say it. So if you have something to say to me, man up and tell me. Meanwhile I have some things to say to you.

-I'm not dead, nor have I tricked a man into knocking me up.
-I am living off myself and my own money.
-I am happily (most of the time) single. I have dated more; eh, it's okay. It's not a priority.
-Why are you looking me up? Are you looking to gloat or otherwise feel better about yourself? If you were truly curious about ME and how I am doing you could contact me directly.
-And those keywords you have used to find this blog? I was joking when I said that! I would never really do that. You can Google it all you want; you may find things I have written but nothing else.

Can you move on now? Because I sure have.

Courtwhit porn

New Year, New Update Part 2

2009-01-19T09:40:00.000-08:00

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.

New Year, New Update Part 1

2009-01-13T11:06:00.001-08:00

When we last left our sponsor on May 31st, I was just starting to have nightmares. Things became a whole lot worse. I was diagnosed with full-blown PTSD based on my post-op experiences from the surgery. I was in a haze, I was not sleeping very well, and I was having more nightmares. I also knew I needed to do something, so I went on a quest for answers. What really happened to me? I requested my hospital records. It took two requests before they finally sent me the entire file. I found it to be both disturbing and unremarkable. They were disturbing because honestly, no person needs to read about how they were strapped down to the operating table or when their vitals became a little unstable. They were unremarkable because the IV failure during surgery that I both heard about in recovery and was told about the following day were not documented. I also thought the records were inaccurate when it came to documenting the times I was given painkillers. The cherry on top of all of this was the inclusion of "versed," an amnesia-causing anti-anxiety med I was given in recovery, some 35 minutes after I actually needed it. Funny, I was never told about this drug and I never gave consent.

So then it was time for the complaints. I left out some details in my original post about my TT experience, but more things happened that were less frightening but were still needless and careless. I first filed a grievance with the hospital. With that pending, I found a swollen lymph node on my neck which landed me in the office of...Dr. M.

I called him first, a little wired, a little scared and he was completely laid back, telling me he needed to see me to check it out. He found a time for me to come in the next day. I was terrified. I was oozing PTSD issues by now and I could not handle the thought of another surgery, though that was the first thing that hurtled through my mind when I felt the lymph node. I was shuffled all around by his nurse, played name-your-own-weight, and was in and out of the waiting room twice before I was finally was settled into a room some 20 minutes after my official appointment time. He came in the room and said, "Okay, so tell me your story again. You found a swollen lymph node on your neck and you are freaking out?" I tried not to laugh (he said "freaking out?") and to just clear my mind of all my sexual thoughts about him.

"Yes!" I said emphatically, leaning forward in his direction. I showed him where and he ran his hand down the side of my neck, then had me turn my head as he felt the opposite side.

"Return to the midline," he said, as I furrowed my brow and gave him a quizzical sideways look.

"Uh, face forward."

I HATE it when he does that; either speak the same language as me, or don't. I don't know what the hell the midline is! (Well, I do now...) I "returned to the midline" and this is where things started to get a little muddled, a little confused, a little blurry, boundaries-wise, for me.

"I'm going to feel you from behind" he said in that killer deep voice of his as he pulled himself onto the examination table and sat behind me to feel my neck.

Um, WHAT?! It's a good thing he couldn't see my face! He put his hands around my neck and set out to feel all around my neck and under my jaw for anything suspect. In sharp contrast to his usual rough and pressure-filled neck exams, he was very gentle, almost sensual. We were both silent as he did this, only his breathing was audible in my right ear. Finally, he asked me if I had been sick lately; I said no. He sighed and said he didn't think it was anything, right as he applied pressure above my scar. Then his hands came off my neck and dropped onto my shoulders. A million alarms went off in my head as his hands dug into my shoulders and his fingers swept across my collar bone. Then he got down from the table.

"It's nothing. It was probably always there and you never noticed, it had no meaning to you. Look, he got it all during the surgery. Your chance of recurrence is really low. How did you find this?"

"I was taking a shower and washing my hair. I turned my head and felt the lymph node and thought, WHAT is THAT? I'm not feeling my neck everyday or anything like that."

"Good, because you could really drive yourself crazy with this."

"I know," I said, nodding.

He leaned over the counter now with a lab form and told me to have new labwork done, turning to look at me with a very sheepish smile on his face. He began to write on the lab form, saying my name, enunciating it, saying my file number...and then he messed up, exhaling hard and closing his eyes like we all do when we think, "duh!"

"I'll be right back."

He returned with a new lab form and started to write on it only to realize he had not pushed the point of his pen down. I was trying not to laugh at this point. He handed me the form and said to go get the bloodwork done, that he would call me when he returned from his vacation in a couple of weeks but in the meantime, he would get me samples of my meds. He left and I got down from the exam table, amused and a little befuddled over how this appointment had gone. He came back and handed me the meds, then he shut the door. I stood there looking at him as he glanced over a couple of pieces of paper in his hand. Finally he looked up at me.

"I'm looking over Dr. ___'s status report and I didn't realize you had such a hard time in the hospital. Do you want to tell me about that?"

Oh man. I did NOT see this coming. I felt every cell in my body go on high alert. I had seen my PCP for sleep meds and vaguely told her what had happened to me. He clearly had her status report in his hands.

I put my hands on the counter and leaned over slightly, putting the boxes down in the process. I admit that I don't remember exactly what I told him, but basically, I imploded. I felt on the spot and I had no verbal rap prepared for this. My friends had all told me to "get over it" and I felt at that time there was something wrong with me for being affected by it. I was able to get bits and pieces of the story out but I ended up so frustrated with it all I just became angry and I told him how angry I was about the entire thing. He stood there, looking withdrawn, a total 180 from how he had appeared during most of this appointment. After I was done waving my arms around and telling him how mad I was, he asked me how my PTSD symptoms were, if I was sleeping at all or having nightmares. I said my sleeping was still very disturbed and he asked if I was taking the sleeping meds I had received from my other doctor. I was not. I told him that they scare me, he told me to break them in half. I said I had not had nightmares in a few weeks.

"I think you are going to be okay," he said to me. I nodded.

"I think so," I replied, not very convincingly. And then...something amazing happened.

"You know," he said, having completely softened again, now leaning on the exam table, "I have nightmares about what I see here sometimes and I wake myself up and tell myself, thank goodness that wasn't real." I looked up at him and for the first time, he appeared human to me. He was slightly disheveled and clearly exhausted. I literally felt warm and full inside and as I gazed up into his face a million thoughts went through my head about death, about my own death and thoughts that he would be the last person I would ever see. But it was not morbid, it was not fear. Something felt close, and warm, and comforting.

"You are going to get over this," he said. I nodded.

"Yes, I think so," I said again, somewhat more convincingly. I almost believed it. He held out his hand and I took it. He held my hand like I was a lady; he didn't shake it. Then he opened the door for me and I stumbled out and over to the lab for the bloodwork.

When I left the appointment that day, I was upset with myself for not being able to tell him the entire story. Suddenly, he appeared to be someone I could trust with my story, someone who genuinely wanted to know. I decided to do what I do best: write. I wrote him a three-page letter detailing everything that happened to me that day, how one thing led to another and to another. I wrote it in one sitting, then I became scared. Should I tell him this much, I asked myself?

Five days later, he called me (during his vacation) with the lab results. They were all normal but he wanted to adjust the meds. I missed his call so he left a long, breathy, rambling message on my voicemail that I have not deleted to this day. I will explain why in a later post. I also finally mailed the letter.

At the beginning of August, I received the official response to my grievance. Predictably, they blamed me, saying I must have ripped out my own IV. I was livid. The following day, I was pacing around my office plotting my next move when my cell phone rang. It was the clinic's number and I wondered if maybe I was in trouble for something else now!

It had been nearly a month since I had mailed the letter to Dr. M and I was no longer expecting any kind of response. I actually had a dream that he sent it back to me after marking it up with red pen to highlight what was wrong. At this point, I assumed he had just handed it off to his attorney because quite frankly, it reads like a lawsuit waiting to happen.

Anyway, I went ahead and answered the call from the clinic and launching my first name through the phone with breathless, intense precision was Dr. M. What timing!

Awake and Slit Open?

2008-05-31T06:44:00.000-07:00

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.

The Need for Personal Alignment

2008-05-26T14:27:00.000-07:00

I am having another rough day.

I am so fucking alone.

I am used to being alone, taking care of things myself, and not being a burden to other people. It usually isn't that big of a deal.

Right now I just want someone to take care of me.

Sometimes I don't even feel like I am on the same planet as everyone else. No one touches me besides my doctors. I get cursory huge from my friends but that is all. Oh how I wish some guy would touch my body sexually! I feel so utterly out of sorts, like no one understands me. Sex, or even just foreplay, would align me with someone else and it would be so divine just for that reason. Last night I thought that alignment was going to be mine in the form of someone I have had my eye on for a long time, but no. It was the same elliptical bullshit I've come to expect from this particular man so I went home alone and cried. Again. I was more pissed off about the missed alignment than I was about his stupidity.

I had another nightmare, this my first post-op nightmare. It was Sunday morning; I woke up too early and made myself go back to sleep. In the nightmare I was on the table with a blue sheet in front of my face and this feeling that I was "stuck," like I couldn't move. I could see the medical personnel and I was talking (I think that I was anyway) but they were ignoring me. I forced myself awake and just kind of vibrated from fear for awhile before I forced myself out of bed. I have to admit that when I went to bed this morning/last night I was a little afraid.

I am a month post-op, btw. I've gained a pound and my gym closed early today and I forgot. I ate a bag of Hershey Kisses with Almonds between yesterday and today, feel totally fat stalled at 205 and kicked my expensive scale into the bathroom wall this morning. People keep telling me how thin I look, but I think it is crap, just like when they say my scar isn't noticeable. No wonder I can't be honest with anyone because they sure as hell can't be honest with me.

The Cancer Spector

2008-05-22T10:29:00.001-07:00

Inevitably, we have other health problems besides cancer that send us to the doctor. Monday was one such day for me, so there I was exactly three weeks post-op back at the scene of the crime.

I was having sharp pain on my left side that wasn't going away- it felt like ovulation but it was going on forever. I saw a physician's assistant on the fly and she sent me off for a very large battery of tests. Because my visit was not planned, she did not have my medical file. It seemed important that she knew I had just had surgery for thyroid cancer so I told her and that was when all of the lab forms came out. First, I went to the lab with a urine sample and then to give three more vials of blood. My poor, overtaxed left elbow vein let out a scream in the form of the most painful draw I have ever had. Ouch. Then I walked over to my favorite place on earth, the hospital, where I had to put on yet another hospital gown for yet another ultrasound. The pelvic ultrasound is definitely more traumatic to me than the neck ultrasound that Dr. M usually performs. The pelvic has an intra-vaginal component. UGH-o-rama. It turns out I have a 3.3 cm cyst on my left ovary. I'm supposed to come back next month for another pelvic ultrasound and to see my primary doctor. More follow up!

So those are the facts, m'am. How was I feeling? Livid. Angry. Exhausted. While I was waiting for my blood draw, Dr. M's fabulous nurse walked by and she said hello and I was a little grumpy but she is just a giant ray of sunshine. Seeing the two of them is more fun than seeing some random person, you know?

Radiology is by the cafeteria, which is by the elevators. When I had surgery, they wheeled me past there on the way to my room. I remember seeing the radiology sign and thinking, hm, of all the times I have been to radiology, it has never been on my back! But then, the cafeteria smells. Oh the smells. I was so nauseous. They warned me that we were going by the cafeteria and my response was to say, repeatedly, "I think I am going to be sick!" Once I was in the elevator I was fine.

So to be back at the scene of that crime, especially after the hard time I had had in the recovery room, freaked me out. My heart was racing when I went over there and when I went to change into my gown, I admit that I cried. I just felt sad. It was more evidence that my normal, old life was never to be again. Even though I was just there for this pain and not for cancer treatment of any kind, it was scary. I swore I wasn't going to be one of those cancer survivors that think every pain is cancer. Yet there I was with this sharp pain in my left side, thinking, "I have ovarian cancer!" I wanted to laugh at myself because it was so absurd, but yet I was only three weeks post-op. My emotions are still raw. I know what I know intellectually but my emotions are just steamrolling that with a, "So?! You have already had cancer, what's to say you don't have it again or won't have it again, or that it will come back or that you will get a different kind?!"

I was called first thing Tuesday with the results and then I was called again yesterday with more results. I almost peed myself each time that I saw the number on my cell.

Now What?

2008-05-09T15:23:00.000-07:00

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

2008-05-08T14:08:00.000-07:00

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

2008-05-08T13:50:00.001-07:00

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

2008-05-01T08:14:00.000-07:00

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.

Depression Settling In

2008-04-25T22:26:00.000-07:00

Depression has really settled in; my shrink being in Australia until after I
go back to work has left me completely fucked. I'm not too happy with her
at the moment; she didn't even give me the name of an alternate person to
talk to.

I've read so much. I've read medical textbooks about thyroid cancer, other
books about coping emotionally, tons of stuff on the net, etc. I'm all
researched out I think. Dr. M and I have not had a conversation
about what will happen after the surgery. I think it all hinges on what
they find so he doesn't know yet. He is supposed to see me when I am in
the hospital, I don't know when or what will be discussed. This is part of
the problem with what to expect when I wake up. If I have to have a neck
dissection (because of the lymph nodes) I may not be able to lift my arms
above my head ever again and may have shoulder pain the rest of my life. I
do weight training, I love it, and one of my favorite moves involves my arms
way, way, over my head. Nevermind I won't be able to reach up to shelves,
hold my kid up if I ever have one, etc. But I won't know until I wake up
if this happens. I'm really, really, really struggling with this aspect.

I am something of a control freak. Intellectually, I know we aren't as in
control of what happens to us as it seems. But I still think that I am in
control, so I am struggling so hard with this uncertainty and realizing
that I have no control over what happens on Monday. Whatever is in my neck
is already there right at this moment. I know going into this depressed is
not good for my recovery. I'm trying to pull myself out, I watched Beavis
and Butthead earlier and it didn't help.

I'm also totally overwhelmed.

I'm trying to create a communications plan so everyone that wants to be
informed, is informed. But then there are complications like this person
can't come see me at the same time as this person because they hate each
other and can the baby come into the hospital too or is it bad for her?
Um, why don't YOU call the hospital and find out?! No one is stepping up to
help me basically and it is probably my own fault for acting like I don't
want help and that I can handle it. Well, I can't. At the same time,
I detest dependence. I don't want to call someone and tell them I need
help cleaning my apartment in preperation for when I come home because I am
too depressed to do it myself. This is one of those few times where I wish
I was in a relationship. I've read so many stories of cancer survivorship
and nearly every single one details the neverending support of the spouse,
who kept the house clean, cooked the food, paid the bills, blah, blah,
blah. What about the single people? Who helps us?

What Actually Happened at the Pre-Op

2008-04-25T09:11:00.000-07:00

Some of you might find knowing what actually happened at my pre-op visit to be of use, so here is a recap of what I did, who I saw, and what we talked about.

First, I saw an account person in the actual clinic area who verified my insurance.

I had my blood drawn for a CBC count only.

Then I walked to the hospital and talked to the patient account rep, who basically pre-admitted me to the hospital. She verified my demographic information: where I work, marital status, race, language, etc. She had my bracelets and a bunch of paperwork in a folder, which she gave to me to give to the nurse who I talked to next.

I'm not sure if this woman was THE nurse or her assistant but she asked me about health history, past surgeries, my diet, any religious or cultural beliefs, what to bring and what to leave at home, and told me where to go and what is going to happen on Monday. I will see the anesthesiologist and Dr. S before they take me in.

Time for the Pre-Op Meltdown

2008-04-24T15:41:00.000-07:00

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.

Attack of the FMLA Paperwork!

2008-04-21T16:39:00.000-07:00

So I have just gotten a look at the paperwork required for my medical leave. I immediately started to feel sick when I looked at it. There are all of these return to work certifications, work leave certifications, blah, blah blah. I know they have to do it because of the laws but my first reaction was to vomit on my desk when I looked at all of it.

Sometimes I wonder if I am delusional and I made all of this up for attention. It seems so unreal.

I continue to exist in my little work bubble. No one in my office is saying much of anything to me. It sucks. I am sure I am giving off the "get the hell away from me" attitude, though I am trying to be normal. It's not going very well, obviously. Maybe they don't want to catch my bad luck? I can't say I blame them. They just want me out of here, that much is obvious.

I got a few things done today, which is good. I need to button this all up by Wednesday. I'm going to cry.

So today I am: sad, anxious, lonely, worried, scared. Somewhere in there I am hopeful and optimistic too, but it isn't shining through too much today.

Perspective

2008-04-21T12:52:00.000-07:00

So I have been able to stop thinking about myself the last few days, as a member of my family was in a bad accident. That's two things this month so I am now waiting for the third. I am superstitious! No one has died but it isn't good.

I have accepted an offer by my boss to go on leave early, so I am only working three days this week. I really want to clean up my apartment nice so that it is really clean and easy for me to get stuff when I come home.

I'm still reading a lot and having random freak-outs about my mortality. I had three panic attacks last week but they have stopped since the other thing has happened.

My sleep continues to be disrupted. The only thing that has helped me is to fantasize about my endocrinologist. It is not upsetting and helps me disconnect from the ugly realities. Plus orgasms are great stress relief and they always make me sleepy. I know my fantasies about him have no basis in reality. I think I am making it up as a distraction as well.

I am incredibly lonely. Many of the survivor stories I have read refer to a spouse and how wonderful he/she was through the whole thing. I don't even have a boyfriend or a f*ck buddy to rely on, let alone a spouse! I have never had a problem sleeping alone and I am not one of those women that have to be with someone. But it is so hard now, my body has malfunctioned on me and I feel so incredibly alone and isolated. I haven't had any contact with a man in over three years, haven't been on a date in five years. I'm pretty; it's not that I am ugly but I think I have emotionally walled myself off a little too much. I have what I have seen referred to as a "highly sensitive personality" and I have worked very hard to toughen myself up over the years but there is a difference between toughening yourself up and walling off yourself. I chose the wall. It's hard work keeping that thing up so I have basically put away my bricks and mortar for now. If the thing crumbles, who cares.

I Wanna Sex You Up!

2008-04-17T20:55:00.000-07:00

This is supposed to be a family-oriented blog (i.e. anyone who wants to read this, can) but I am going to talk about something a little adult-themed in this post, so you have been properly warned. As a teenager I looked at porn on the internet all of the time, so I don't expect all of you to automatically tune out and think, "Ohhhh, I guess I better go back to disney.com."   Yeah right! You should, and I want you to, but I doubt you will find this much racier than the crap you kids see on tv today. (Geez, when did I get so old?)

Since this whole disaster started, I have been fantasizing about my endocrinologist.    I've never been one for doctors and I am still not but there is something about the way Dr. M has handled me and my case that is a turn on.

When he did my biopsy, he wiped all the blood off my neck afterwards. It had run down the side of my neck and down my shoulder, so he had to flip me over slightly to get it and he made this cute little, "Oh" when he did it.   When he biopsied me he was very careful and deliberate, telling me what he was doing every step of the way.   When I nearly fainted after I sat up, he kept his eye on me the entire time he remained in the room. And when he called me, he was obviously concerned. I called him later with some questions and he still sounded very concerned for me, which was very sweet.

Since then, I have been taking further comfort in fantasies about him. He's a healer, I have cancer, it's all very natural.   My current one is probably an extension of my fears about surgery, death, and this whole episode, I think, as in it he comes to see me before my surgery and I wordlessly straddle him (hospital gown and all). It has been great stress relief to have this little fantasy. That is all it is; he is SO not my type and male doctors are always married (who do you think did the dishes when he was in med school?). Plus I want him to treat me right up until the bitter end. I think he is a great doctor.

Why Did I Get Cancer?

2008-04-17T13:39:00.001-07:00

After the shock started to wear off, I found myself asking why I got cancer. Was it too much ice cream? Too many trips to Alberto's? Cooking my food in high heat on a teflon-coated pan? Not enough veggies? Too many pizzas?

There is no cancer in my family. I have none of the thyroid cancer risk factors. Yet I have cancer.

Many argue it is our terrible nutrition here in the US of A. Kris Carr discusses this in her book "Crazy Sexy Cancer," though I have yet to read a hardcore scientific book on diet and cancer, so I don't take it as gospel.

Anyway, as I was coming back from getting coffee this afternoon (it's the coffee! or the whipped cream I get on it once a week!), I started thinking of humorous reasons why I might have gotten cancer and here they are.

-I cussed out too many drivers on my commute.

-I used to take cookies when no one was looking and would rearrange them so it wouldn't look like any were missing.

-I surfed the internet too much at work instead of working.

-I flirted with too many older men, professors, bosses, and doctors (oops).

-I told too many girlfriends about a former boyfriend's lack of sexual prowess (Karma!).

-I was a shoplifter when I was 12 and never got caught.

-Masturbation, porn watching, exhibitionism and other sexual adventures.

Do you have humorous or twisted-funny reasons why you might have gotten cancer? Share! We all need more laughter.

The Inner Pep Talk

2008-04-16T14:28:00.000-07:00

If you are anything like me (and you might not be at all so this may not apply), there are moments where you feel fine and everything is just going along kinda normal. Then you see something that hits you square in the gut and you totally lose it. I was perusing the bookstore on my lunch and there was a book about dying, and stupid me decided to pick it up.

"Nice job there, CW, pick up a book about dying while you are walking the cancer tightrope. That'll help your state of mind!"

I had to fight not to lose it right there in the bookstore. I put it down and walked out. On the way out I was pep talking myself like crazy.

"You aren't going to die from this. Dr. M said the prognosis is great. Dr. S has been cutting out thyroids for 25 years. It's all good. You have a new life perspective and you are learning from it. You aren't going to die for a long, long time."

This worked on the short-term, but like anything, the doctors-that-be don't really know what they are going to find until they go inside so it could be worse than what Drs. M and S are telling me. They are only going off of what they know right now.

It's okay to be afraid is what I am saying. Don't let the positive talk posse make you think that if you feel bad at any time that you are not staying positive or that you don't have hope. You can have both of those things and still be afraid.

Victory is Mine (or how I learned to triumph over my HMO)

2008-04-15T17:51:00.000-07:00

I have a surgery date. I am so incredibly relieved. My depression lifted immediately and I feel so much better.

I called the HMO again late this afternoon and lo and behold, I had approval! So Icalled Dr. S's office as fast as I could and we scheduled it all. I have a pre-op next week, the surgery on the following Monday, and then a post-op in eight days.

For the pre-op I am only having a blood test and a bunch of meetings with insurance people and nurses. I expected a lot more than that, so this is good. I've read that often a CT scan or MIR is done as well as a laryngoscopy, which sounded really awful. But I am not having any of those. Keep in mind that I am considered an easy to treat case and that cancer hasn't been 100% totally confirmed, though I don't doubt Dr. S's proclamation that a highly suspicious biopsy is always cancer.

I have no idea if my three-day long streak of pestering the HMO had any effect on how fast or slowly this was approved, but always ALWAYS be your own advocate. This is important anytime we see the doctor but when things have really gone down hill, that is the time to grit your teeth and push through it.

I went through this when I was first diagnosed hypothyroid in 2005. My primary care physician didn't think my hypo was bad enough for levothyroxine. I tested in at 7.5, with extreme brain fog, cold extremities, brittle hair, short-term memory problems, no period, bloat, and severe depression. Dr. K initially diagnosed me as suffering from severe clinical depression. I had five TSH tests, each one was progressively better so she said I was fine, even though I also had very high antibodies.   I said hell no and got her to start me on the drugs. Later when I didn't show improvement and I asked for an increased dosage, she told me no and so I decided to be treated
exclusively  by Dr. M and his staff.  He had a fellowship holder, the "other" Dr. K, who was incredibly
awesome, and she worked with me and listened to me. I hardly saw Dr. M, just her and that was fine.

I managed to get a little work done today. Luckily I think I can catch up tomorrow before I meet with my boss on Thursday.   My mojo is back now that I have a date to get this crap out
of me.

Yay, wheatgrass shots for all!

Working When Distressed

2008-04-15T09:00:00.000-07:00

As I have not received any treatment yet, I am still working. I work in fundraising at a large, well-known university. I was recently promoted after my boss left (I took her job). I was very excited to have control of programs that I previously just did the grunt work on, but then of course I received the call and that completely threw me off.

My colleagues have been very supportive so luckily they are not the problem. I am the one that is the problem! I have trouble asking for help, first of all, and don't like to give the impression that I have any weakness, especially on the job. I am known for getting things done. But now I am having trouble getting things done.

Today I am going to perform a little exercise to see if it will help. I am going to write out why I am distressed and the related feelings. I will let you know if it helps.

-I am anxious to get my surgery scheduled and am frustrated with the HMO and my doctor's office.
-I feel like I am out of control.
-I am in limbo.
-I am scared that I am not going to get good treatment.
-I think this because of the snail's pace at which this process is moving.
-I am scared that I am going to slip into a major depression.
-I am scared about not having enough sick time to cover the entirety of my treatment.
-I am scared that I am going to lose everything if I cannot return to work before my sick time runs out.

What can I do?
-I need to think about my needs right now. Right now I am trying to get work done. Right now I need my surgery scheduled.

That is all I am going to be concerned with.

I am going to work now and I will report back.

Do You Have Authorization?

2008-04-14T20:28:00.001-07:00

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.

The C Word

2008-04-14T10:56:00.000-07:00

First post.

April 1, 2008 12:51 pm.

My endocrinologist calls me at work. He sounds nervous.

"Do you, um, have a few minutes?"

My hand starts shaking so badly I think I am going to drop the phone.

"Your biopsy has come back suspicious for cancer. Your thyroid is going to have to come out."

"What?!" Cue sobbing.

"I know this is a shock to hear. I didn't expect this result at all. I need you to write down this name that I am going to give you and call him to schedule surgery..."

I nodded, sobbing, as I wrote down the name of the surgeon.

"The prognosis is excellent," he told me, something I only remembered eight hours later. "This is very easy to treat. I know this is shocking, please give me a call if you have any questions, if you think of anything."

I squeaked out an okay between sobs and hung up. I was in my office, with the door shut and I just cried and cried. After a few minutes I composed myself.

My life had just changed forever.

Thyroid cancer is commonly referred to as the "the good cancer" because it is fairly "easy" to treat, is slow growing, and doesn't require chemo. NO cancer is ever "good." Don't let this fool you and don't let people minimize what you are going through.

I am 28 years old, fairly healthy. I was morbidly obese but I had lost 40 pounds through diet and exercise (still losing)  to get to a more normal weight.    At 207 and  5'6 I am still considered obese on the BMI. There is no cancer in the family.

I have had hypothyroidism since 2005. I also had many nodules, and one was to be biopsied back then but the soonest I could get in was in TWO MONTHS so by the time I went in, it had shrunk. My nodules were monitored and this year one had enlarged so Dr. M had opted to biopsy, constantly telling me that it was nothing, that 90% of these things are benign, that he didn't expect to find anything wrong.

Though the suspicious result was not a flat-out malignant declaration, this evolved as I met the guy who was going to save my neck, Dr. S.   He blew my head off in our first meeting by telling me the biopsy was "highly suspicious" for papillary carcinoma and that for all intents and purposes, I have thyroid cancer.   He also told me Dr. M had seen a suspicious lymph node. Excuse my french, but FUCK!

As of today this is all I know. Currently I am reading a lot of books and making a lot of calls to my health insurance, HealthNot, as I am currently calling it, trying to get my authorization done so I can get treated.    I'm nervous and scared.

I decided to start this blog, first and foremost, to spare everyone else I know on my "personal" journal from hearing about my ups and downs. Second, I thought there might be others out there like me who needed to hear from someone going through the same thing.

It's been almost two weeks since my life changed; with every step it changes even more.