Information Dump

I've been procrastinating on this post for a while mainly because all I had to report was ambiguous and bummer information. Let's start with that:

I went to Dr Lori Book, my endocrinologist 3 weeks ago. Before that she had an informal conversation with Dr David Book: her husband, my surgeon about my case and they realized that yet another doctor had ordered a CT scan with contrast early on in the diagnostic process. The contrast contains loads of iodine and an aggressive treatment plan calls for 6 months between such a scan and radioactive iodine treatment. So the treatment I was supposed to have last week was delayed until January. The other shocker was when she told me that I had an extensive and aggressive case and that it had probably been going on for 10 years!! The primary tumor was small but the spread to the lymph nodes in my neck was extensive which is abnormal. Usually the size of the tumor correlates with the aggressiveness of the cancer. Where I had been viewing the radioactive iodine as just a clean up procedure and the end of the road for this little chapter of my life, she made me realize how possible it was for me to have "distant metastases" in my lungs and bone due to the apparent aggressiveness of my case. We talked about the possibility of recurrence etc. So I wasn't very upbeat at the end of all that.

I have some good information now though. I just got off the phone with her medical assistant with the results of my blood labs. There's a protein called thyroglobulin that is monitored in these cases. It is produced by thyroid cells and in my case it's a direct indication of the amount of remaining cancer cells in my body. The level of thyroglobulin was so low it showed no cancer! I haven't talked with the doctor yet but I'd imagine this would affect my treatment plan going forward. It's absolutely good news though!

Major thanks to the skill of my surgeons Dr. David Book and Dr Gregory Buchalter!

Insurance

Check it out, total billed $54,360. Total they actually get $6511.00 (12%). What a health care system... what if I didn't have insurance? Could I go in and say "I'd like to pay 12% of my bill and call it good? HA!

Next Steps

I'm feeling just fine now. I've been off of all pain killers for a few days now and the staples are now medically ready to come out. They'll be extracted on Tuesday and then I'll have to rely on my scars for a conversation starter :). I'm spending the weekend with Mom in Buena Vista. I just got back from a run. The replacement thyroid hormone has actually given me more energy than before! The surgery site got a little agitated but no big issue.

I visited the Oncologist last week and now everything's scheduled for the mop up nuking operation. On October 6th I'll go take a tracer dose of I-131. The next day I'll sit under their scanner and any remaining cancerous thyroid cells will be illuminated. Based on the number and size of these hot spots they will administer an appropriate kill dose of I-131 which will kill any remaining cells. I'm told to be a little tired afterwards... not bad! I'm also to avoid contact with people, especially children after the therapeutic dose for a few days.

Dr. Book told me that the Endocrinologist would be the doctor responsible for this. Since I haven't been able to get an appointment with her (Mrs. Dr. Book) I'm happy to have Dr. Markus pushing forward. There may be some conflict and intersection of roles during the hormone replacement tuning... we'll see.

So I've got staples in my neck, a giant scar, I can't feel the skin at the surgical site (yet), I have to take a pill full of nuclear waste , I still have to get settled into a dosage of thyroid replacement, yet all I can think was : that wasn't so bad :).

Why can't it be Halloween?

I could really work with this:

Save Clicks

I added a box on the right side "subscribe via email". If you put in your email address and click subscribe and then jump through the hoops it will send you any blog posts I made for a given day the next morning to your email inbox. That way you don't need to figure out RSS readers and you don't need to check to see if I've posted anything. If you want to comment click on the title of the post in your email window and it should send you to the blog where you can comment normally (I think).

Well Enough to be Bored

I'm starting to get bored of recovering. That's a good change from a few days ago when I was too uncomfortable to get bored. I've had some road bumps since my last post.

I came home from the hospital in the afternoon on Friday the 27th. I took a nice shower and reduced the gore factor a little bit by washing off the dried blood around the incision. That night I was only managing about an hour of sleep at a time. I'd wake up and have to take pills or just wake up. At about 3AM I was woke up and noticed that all of my extremities were tingling. I went to use the bathroom and while I was standing my leg fell asleep and I felt like I was going to collapse. I laid back down and all of the toes on my foot seized up, locked curled up. I woke mom up and we went to the ER.

The Penrose ER is a completely different story than my experience at the rest of the hospital. You are greeted by not medical staff, but a security guard. Then after explaining that you feel as if you're about to black out and have a heart attack you're handed a clipboard to fill out your billing information. We were in the waiting room for about 20 minutes before the nurse had us come back to explain the medical reasons for being here and take vitals. When they took my blood pressure with the cuff my hand involuntarily seized up into a claw... It's scary to watch an appendage go into factory test mode. Mom fell when a wheeled chair slipped from under her the nurse became very concerned about if she should drop everything and fill out an "incident report".

We went to an ER curtained area.

• They got me hooked up on an IV and a timed automatic hand cramping machine. 
• They took 5 vials of blood
• The results came back and the doctor didn't know what was going on (he wasn't the sharpest tool)
• They called my surgeon's on call doctor who said to administer IV calcium and admit for observation
• They gave me an IV bag of calcium and wheeled me up to a room.

Well that was easy and should have taken an hour right? Wrong! Each step was initiated by going over to get a nurse to figure out what the heck was going on. The entire process took 5 hours, most of that time I was pretty sure I was about to have a heart attack and the nurses were at their station gossiping.

The next day Dr Book's doctor on call, Dr. Knox came by to check on me. He asked when the last time I'd take the oscal was. Wha? Never heard of that med before... It turns out due to a mistake somewhere along the way a critical calcium supplement prescription didn't make it into a bottle on my counter. Since my parathyroid glands are taking a break the supplemental calcium is the only source that keeps my muscular and nervous going. Whoops, so sorry, go buy some of that.

Dad came back into town to help since mom had been up all night with me. When I got home after a few hours of laying on the sofa like a zombie I noticed all of the tingling returning. I called Dr Knox who basically said take as much calcium as it takes to make it go away. I was already on a schedule of taking 18 of these big calcium pills per day! It did work though.

Sunday cold symptoms started developing I couldn't talk, it sounded like I was speaking under water. Swallowing was hard because of the junk in my throat and swollen ex-thyroid area around my trachea. That night going to bed I had a fever of about 101F. We were wondering if I had an infection and should go to the hospital again. I staid home though, waking up at about 30 minute intervals trying to clear my airway as much as possible, popping some pain killers, calcium and then trying to go back to sleep.

Tuesday was the breakthrough day. Since then I've been mostly just on ibuprofen for pain and I'm no longer just sleeping all day like a cat. My energy level feels good. I'm taking my temporary thyroid replacement : Cytomel. The stuff's like speed. After I take it my heart starts beating faster and I get an energy boost. 

So now I'm getting bored and writing excessively long blog post! :)

Alive

Hello everyone. Posting from my phone now in my hospital room.

Surgery took about 5.5 hours yesterday. I didn't get a ton of sleep last night but everything's starting to come back online. Dr Book says everthing went really well. I'm walking up and down the hospital floor in this very stylish gown. It's a good thing there are no small children around because I think a look at my neck would have them screaming and running away :)

I'm on the oncology floor at Penrose which has private and recently remodeled rooms. The nurses here are outstandingly nice and helpful.

I'm back on solid foods, swallowing feels a little weird for now. I really had no desire to do anything but lay in bed until they gave me the thyroid pill. Now I'm feeling fine... as long as I keep my head pointing straight forward :). I'm getting some painkiller by IV every 6 hrs. Last night I did ask for one round or morphine (which was allowed once an hour!). Dr Book says its my call on leaving today. I might just go ahead and stay another night to be safe. I'm detached from all the machines currently which is nice.

They removed a good bit of tissue and all the lymph nodes in my lower neck. He says the thyroid itself was barely swollen and they had to kind of guess at the cancer site. It's all going to pathology now. Dr Book called mom and dad from surgery twice to say how it was going. 2 major possible complications are out of the way because I can lift my shoulders and speak fine. My calcium levels are a bit low which is common immediately after traumatizing the parathyroid glands, but the doctor thinks they should be ok in the long run.

I'm doing well all considered!

The Big Day

Everyone's been so kind to call and email. You're all the best friends and family I could ever want!

Well last night was the my last meal for a while. I went out with Mom to the Blue Star Restaurant and ate a nice meal. We coincidently saw Liz briefly... hi Liz :). No eating today, surgery is late : 1:00 and we need to arrive at the hospital at 11:00.

I was reading all these blogs about people having no thyroid hormone after surgery and feeling 100 years old because of it so I fired off an email with a bunch of questions to my surgeon Dr. Book. He got back to me this morning with a detailed reply to my questions chiefly that I'd be given a prescription for a thyroid replacement hormone with a short half life immediately after surgery. This drug is quickly removed from the body so it's ideal in the time before radioactive iodine treatments which require "hungry" thyroid cancer cells to show up well on a scan. I was really impressed by his thorough and quick reply.

My Endocrinologist will be Dr David Book's wife Dr Lori Book. She'll get me setup with the radioactive iodine treatment and the thyroid hormone level tweaking. I called and got an appointment this morning and the scheduler said the earliest appointment was for 9/22!! I told her I was having surgery today and she put me on the cancellation call list. She think I should be able to get in much sooner.

I'm still not worried, let's GET IT DONE

Oh 1 more thing: mom and I went to a "genetic family councilor" appointment yesterday. The main take away that I got was that she said that "1st degree relatives" (something like that -- meaning a parent had thyroid cancer) should be extra careful because since in the Faith family it's been in multiple generations there might be a heritable element to it which isn't typical with Papillary Thyroid Cancer. So physical exams for everyone! I also read that there's a blood test for something called Thyroglobulin that can be an indication of thyroid cancer. Maybe they can screen using that blood test? Anyway, get a physical!

Falling Apart

Geez this is getting ridiculous. As if the looming cancer treatment wasn't enough I have a gout flare up going on in  my big toe and I've got the cold! I'm pretty glad that human evolution has stopped because I would have been "selected" long ago (I remember getting strep throat all the time as a kid). Up with pharmaceuticals!

I'm going into surgery day at full blast too. I'm traveling to KS for Alison's wedding then catching a plane at DIA on the way back without even stopping in at home for a business trip to CA and TX and then Longmont, CO. Finally, I've got a project delivery deadline on the 20th. No time to for brooding this way!

I've also got an appointment the day before surgery with a "genetic counselor". They were interested to hear about the 3 generations of thyroid cancer and might do some genetic testing to see if there's some kind of genetic mutation. Kelly : you better be getting annual physicals!

Date Set

• The surgery will be on 8/25/2010
• The hospital will be Penrose
• It will last about 5 hours
• I will be admitted in the hospital for 1-2 days
• The recovery period is ~2 weeks
• The surgeon will be Dr. David Book
• Surgery will be a selective modified radical neck dissection (you probably don't want to click that link...) and thyroidectomy
• I'll have to take synthetic thyroid hormone from here on out
• After the surgery I'll get a diagnostic dose of radioactive iodine which will light up any thyroid cells remaining in my body on a full body scan (we don't want these)
• I'll get a higher dose of I131 (radioactive iodine) depending on the scan results to kill the remaining cells.

After consulting with 2 Colorado Springs surgeons : Dr. Book and Dr. Knox I decided to stick with Dr. Book who did the biopsy of a few lymph nodes in my neck already. When I found out the surgical procedure that is used to treat thyroid cancer with lymph node involvement I wanted to broaden the input I was receiving. After all I'd been referred to Dr. Book, for all I know he could have just been the referring doctor's golfing buddy. I think the state of the medical system is pretty messed up when I can get vastly more information about my LCD TV than the guy whose going to be slicing me open. The lack of data is very frustrating to me. In the engineering world I know a lot of people with the title "Engineer" and I know how widely the skill levels range so I wasn't initially very comfortable with going to a guy with the title "Surgeon" and knowing nothing more. Dr. Book answered my questions consistently with my research and didn't have the attitude that I should just get on the table and let him do his thing. His PA said that he does the second most surgeries at Penrose so he's got a lot of experience. He's a good surgeon I'm not worried.

Apparently the surgery is a lot more common and less "radical" than it sounded. There's a list of possible complications like anything but they are rare. The scar will be faint and Dr. Book gave me confidence that he can avoid most of the skin nerves to minimize any loss of skin sensation as much as possible.

At this point I'm just ready to get this over with and move on. I'm committed to coming back stronger than I went in. Since that's my goal with every malady I'm getting to be one strong dude (in other words enough with the health problems already).