Still here wallowing in Phase 7, also known as "wait and wait and wait" mode. The blood work that I drove 5 hours for last week turned out NOT to be the blood work that I wanted. See, I want to get the bloodwork that tells me that radioiodine worked, and the Thyroglobulin (tumor marker) number is going down rather than up. The "cancerisallclearnowgetbacktoyourlifethankyouverymuch" number. No. Instead, I drove five hours for blood work that I could've gotten 15 minutes from my front door. My TSH... which was fine. Like I knew it was before I'd even left. When the nurse called with my TSH results instead of my thyroglobulin results (I was still in the car driving back from Wisconsin!) I burst into tears.
"What about the TG?" I asked desperately.
"OH. The doctor didn't order that test. Just your TSH."
"THEN WHY DID I JUST DRIVE FIVE HOURS?????"
She uhhhhed and aaahhhed a bit, and then apologized profusely and promised that she would send me a $15 gas card to make up for this mistake. I don't care about the gas. Or the time I wasted. I want a stinkin' TG lab ordered.
I asked her when I might get my TG checked again, and she said she would ask the doctor and get back to me. To be honest, I am an emotional basket case these days. I don't know if it's hormones, or PTSD, or WHAT... I just want the uncertainty gone, I want the "all clear", and I want to get back to my normal life as if none of the past few months had ever happened. The ambiguity and waiting is driving me crazy.
The nurse called me back, and told me that the doctor would order another TG. In SEPTEMBER. As in four months away September. FOUR MONTHS of not knowing. This is not okay. I think I finally reached my breaking point. I know the nurse was simply relaying information second hand, and to take my frustration out on her was really not fair. But it just made no sense to me to wait so long. It seemed CRUEL, actually. I know it might not be a perfect number if we redid the TG test, but I should at least get to see a downward trend, right? Instead of an upward trend? Isn't that worth doing the test again? I was just so upset at this news, I couldn't really speak rationally. So, after taking a day to calm myself down, I called the doctor's office and asked to speak to him directly, for the first time since we met at my initial evaluation in January. Mano y mano, to answer my questions specifically, and not through a third party.
The doctor did call me back, but he was not happy about it. It was kind of a breech in protocol, I believe, me asking to speak to "the man" himself. I didn't care. I had questions, dang it. He answered my questions with short, direct "all business" answers, but he DID answer them. Just not in a way that gave me any sort of reassurance whatsoever. When I brought up all the concerning things that were making me nervous (the tumor having doubled in size in a few months time, the high TG numbers that were going up instead of down, the whole body scan that showed mets to lymph nodes and possibly the lungs, the lack of testing to determine if my cancer was a more aggressive subtype) he just said "it's too soon to really determine the extent of things. Technology just isn't that good. We can't know until September". I asked him if it wouldn't be a good idea to at least see a downward trend of the TG number? He said yes, it would be good to see. In September. I asked what would happen if the number continued to rise instead of fall. He said we'd figure that out... in September. It was obvious (to me at least) that I was seeking some kind of answers to put my mind at ease. All he had to do was say "Monica, it's okay. Rest easy. We've got this." Or something to that effect. But no. He was short, and business-like, and rather irritated-sounding to have to deal with me at all. And he would NOT give in about re-doing the blood test before September.
So...... PHHHHHBBBBBLLLLLTTTT.
The thing is, I was getting the impression that the doctor was irritated at me for not trusting his judgement. He didn't say that, obviously, but that was the vibe I got on the phone. Like, "I'm the doctor, you're the patient. Just trust that I know what I'm doing and shut up about it." But you know what? Since December 26th, it's been one medical foul up after another for me. From the injury of my laryngeal nerves during surgery, to contracting c.diff from the hospital, to not finding out about cancer until 10 days after surgery (after it was too late to check lymph nodes and all that), to having lab results for thyroglobulin be totally wrong TWICE, to driving five hours for a blood test I didn't need! And now I'm supposed to just shut up and trust them all?? Really? Because to be honest, I'm a little on edge after all of this. This is the big one. The one, out of all of them, that we really can't mess up - this dealing with cancer. And now I get the "why are you so worried about this?" After months of crap and one complication after another, now I'm not supposed to worry???? About cancer of all things? Because it's the "good kind"?????
I've just had it. With all of it. I'm sick of thinking about it all, and dealing with it all, and worrying about it all. And so I've decided. It doesn't exist. If they won't give me the all clear, I will give it to myself. I hereby give myself permission to assume that I am ALL DONE with everything pertaining to my thyroid. I am HEALTHY. I am NORMAL. If anyone asks me how I am, I will say very truthfully that I am FINE. For my sanity's sake, I am cancer free as of this moment. And I will NOT think of it again until I am forced to... in SEPTEMBER.
On with my life.
Phase Seven Complete.
End of rant.
