Endocrinologist 2: That's what I know... this is what I don't know

    So, this morning, I went to the school to do flashcards like I normally do... because life goes on.  We still haven't told the girls, but I think the time is coming quicker than I had intended (more on that later.)  I chatted about my condition and treatment plan (or current lack thereof) with Jo-Anne (one of the secretaries in the school office).  Having been through cancer herself, although a much more difficult situation than this, she understands the emotions I have been through and the fear I have felt.  She always knows how to boost my spirits... she even said she wished she could have taken the day off to go with me to my appointment today.  That totally made my day!  I really do have the best support system possible.  I love these people, all of them.  How is it possible that I know so many AMAZING people?  I am truly blessed.
   I came home and had a hard time waiting for my appointment time to come around.  I had about an hour to kill and couldn't quite bring myself to accomplish any 1 complete task, but fiddled around with a bunch of different little things here and there.  I did, however, type up my questions for the doctor so that they would be on a big, regular size sheet of paper (not on my phone) so that I could look at them and know what I wanted to ask and not forget anything.
   I emailed Jo-Anne.  I texted Susannah.  I cleaned the hallway.  I straightened the bathroom.  I printed my list of questions.  I put some breakfast dishes in the sink.  I cleared my computer desk to get ready for meeting this afternoon.  Anything to get my mind off of "the wait."  Finally, it was time to go and I headed out.
   I got to the office and signed in.  Chad barely let me write my name down before he took me back.  He took my vitals and took me back to the exam room.  I waited there about 3 minutes.  That's it...  record time for meeting a doc.  Dr. V is young.  I'm just guessing, based on her year of graduation from medical school (so somewhat educated guess),  that she is in her early 30s.  She walked in, sat down, looked me in the eye, and said, "Tell me what you know."
  "I know I have Papillary Thyroid Carcinoma.  We are going to treat it by having surgery to remove my thyroid.  It's on both sides, so we're doing a total thyroidectomy.  Then, depending on what the surgeon finds, you will decide whether or not I will need to have radioactive iodine treatment after that.  Also, for the rest of my life, I will need to take pills to replace the hormones that my thyroid is supposed to make."
  She nodded and smiled, "You don't need me.  You already know everything."
  "That's everything I know..." Then I pointed to my printout of questions, sitting on the counter next to me, "...this is everything I don't know.  These are my questions."
  "Well, let's get started!  What can I have you with?"
   "What stage cancer is this?  I don't know."
   "I don't know that either.  We won't know for sure until we do surgery..."  She then went on to answer that question in greater detail and each of my following questions in equally great detail.  She didn't rush through the appointment and spent nearly 35 minutes with me, not going over information I already knew, but explaining things I actually needed to know.  How long I would be radioactive and need to stay away from my kids if I did the treatment (depends on the dose, but usually only 1 week).  How long before I would do that treatment, if it was necessary (2-3 months after surgery).  Then, I asked about my lipoma.  She had a totally different take on it than Dr. You-should-get-that-removed-because-people-will-see-it did... she said that I should bring it up with my PCP because now that I have had one type of cancer, he might want to get it biopsied.  If it is just a lipoma, like we think, then no big deal.  If it is a different form of cancer, it will tell us that we need to do a full body scan NOW and make sure there are no other cancers anywhere.  She said if he didn't want to do the biopsy, it's fine, we can wait.  I'm going to have a full body scan 6 months after my surgery anyway to check for left over cancer in the body and the cells would "light up" at that time, so I was fine to wait.  But she did say one more time, that if it were her, she'd get the biopsy.
  I asked about the Thyroid panel.  No one seems concerned about this, yet it makes perfect sense to me.  When a doctor checks normal blood work for thyroid function, they test TSH levels.  TSH (Thyroid Signaling Hormone) is a hormone not made by your thyroid, but rather your pituitary gland.  So, basically, when your TSH levels are normal, all that means is that your pituitary gland thinks your thyroid is normal, doesn't mean it actually is or isn't.  Your thyroid makes T4 hormone (it has a super fancy chemical/scientific name, but mostly referred to as T4.)  It also makes some other lesser hormones and binding agents and stuff, but we're not getting into that here.  T4 is important, but not very active.  Your body reacts to the T4 and converts it to T3, which is VERY active.  T3 is responsible for EVERYTHING in your body that the thyroid is responsible for, just about.  So, a full thyroid panel checks for the T4, free T4, T3, free T3, the binding agents, all the other lesser hormones, and TRH (TSH Releasing Hormone) which is produced by the hypothalamus.  This panel lets the doctors know what you have going on in your body with your thyroid and what your body will absorb properly and what it won't.  Is your thyroid getting the message from the pituitary?  Is the pituitary "in tune" with thyroid?    Long story... but anyway... I felt like I should have this blood test run.  I asked for it.  She said it wasn't necessary.  I told her I thought it could reveal some answers to symptoms that I've been having for years.  She disagreed with what it could find, but wrote the order for the blood work, anyway... I thought it was a victory... until I got home and saw that the order was for 2 tests: TSH levels and free T4, not a full panel... progress, but not the victory I was hoping for...  I am going to insist I get this from my PCP.
    Bad news... this doc also mentioned gaining weight after the surgery while trying to get the dosage right on the thyroid meds...  said it is expected... almost inevitable... not much we can do about it.  I wondered what that meant, exactly so I Googled when I got home...  Ugh... 20-30lbs!!!  Are you kidding me?!?!  I can't.  I just can't.  I'd rather live with cancer.  No, I wouldn't.  It's just not fair, I have worked hard to get here... other cancer patients lose weight spontaneously, just by having cancer, why do I get the one kind that makes you GAIN it!!  So annoying.
     The final thing that I talked to Dr. V about was surgery.  I saved this topic for last, here on my blog, on purpose.  That's because it was the most stark difference in what I had been told all along.  I told her I found a surgeon I wanted to use but wanted to hear her recommendations before I said who it was (I wanted to know if they matched without influencing her recommendations).  She said, "Dr. P, but he has a long wait list."  I smiled and said that's who I had found, through my research, as well, and that I had an appointment with him on Aug. 29.  She scowled.  "See?  That's a long time.  I would like you to get in sooner.  There is also Dr. L and Dr. S.  They are here, locally.  I haven't used them, but my associate has had very positive experiences with them.  I know DC is far from here, but if you are willing to go, I can recommend Dr. R, Dr. C, and Dr. F.  I have worked with all of them and they are amazing doctors and do very good work.  I did my fellowship with them and when I left, one of them told me that if I ever needed a patient to get in faster than what they normally could do, to email them and they would get them in."  I smiled, broadly, at her, I think I was just about bursting...
"Dr. Jennifer R? She's an endocrine surgeon at WHC?"
"Yes..."
I sighed a deep sigh of relief.  What are the chances that the EXACT practice that I had come across FIRST in my research, the one I loved the most, the one that SPECIALIZES in my kind of surgery, is the EXACT one that this doctor did her Fellowship with and that she has connections with?  What are the chances?   I had dismissed them as soon as I found Dr. P, who was closer and just as specialized... I felt like finding him was miraculous, but to have this group fall back into my lap and I was fairly certain from the beginning they were the ones I wanted to use.  How cool is that?
"If you can't get in to see one of them in June, just even to talk to them, let me know. I will contact them and get you.  I want you to talk to a surgeon in June, even if you don't have your surgery in June."
"Well, I was REALLY hoping to have my surgery in early August.  We are going to be traveling the beginning of July and the end of July and I don't want to be recovering while on either one of those trips...  So, I was thinking I could meet with the surgeon in between those 2 trips and then schedule the surgery for early August."
"Hmmm...  I don't like the idea of you waiting that long.  You had swollen lymph nodes.  They didn't show any abnormal tissue in the scan, but we won't know for sure until they do the surgery if the cancer has spread to those surrounding areas.  This is a slow growing cancer and if you didn't have those swollen lymph nodes, I would tell you to wait, but those lymph nodes are making me uneasy and I really want to get you in sooner, rather than later.  At least talk to the surgeon in June, even if you don't have the surgery in June."

That was not the first time someone had mentioned having the surgery in June to me... Jo-Anne said it, 2 weeks ago!  My mom asked about a week ago!  But it doesn't fit with my travel plans.  I have to load a car, by myself at the end of June and drive to PA to pick up my husband and then help drive across country... driving requires turning your head, a lot... I can't be recovering from neck surgery.

But, this was the first time a doctor mentioned needing the surgery that soon.  She then went on to suggest that I "consider" having the surgery between trips in July, if possible.  That is more possible, but would still be inconvenient.  I will wait and talk to the surgeon about it, especially after she has reviewed my images and seen all of the reports.  I think waiting 2 more weeks to the very beginning of August would probably be okay...  right?  We'll have to see what the surgeon says.

As I left the office, Chad stopped me and said, "You know that if you can't get in to see a surgeon soon, you are supposed to contact us and we will make the appointment for you, right?"  I seriously love this practice.

I came home from my appointment and found the contact info for Dr. R.  She had an online appointment system (yay! I hate talking to people!)  She has 2 different office locations... first one showed June 30 as the first available appointment... okay, that's June...  2nd one showed...  June 12!!!

I made the appointment!  About an hour later I got a call from her office stating that they actually needed to cancel that appointment time, but wanted to know if I was available on June 5, a full week earlier.  Um, yes!!  That is in just 3 weeks from yesterday, I will meet with a specialist surgeon... not in 3 months.  I didn't even need to use Dr. V's connections to get the appointment, either!

I'm nervous and excited to see where this goes.  I am NOT, I repeat, NOT, excited about driving into DC.  I do not like cities.  I do not like driving in cities.  I do like DC.  I do not like driving in DC.  (It is not just a city, it is a special kind of personal hell for me, so it gets it's own category.)  Ugh, I'm starting to have a panic attack just thinking about it... but I feel like it will be worth it.