Figured I’d try something new and write about my thoughts and things I’ve noticed while on this new experience.
Thursday, Oct. 16th
Arrived at the airport about 2.5 hours early because I was on a mission to go to the only Coffee Bean & Tea Leaf in Washington. Unfortunately, it’s in terminal A and I was flying out of terminal N. The line for security was fairly long, but no issues getting through.
I make my trek to my first destination, not too long of a walk, and of course it was well worth it!
As I was walking back to my terminal I overheard a lady as she walked by talking to her friend mention something about the low-iodine diet. My head turned quicker than it has in a long time. Of course, I didn’t ask them if they were going to the conference as well, but I know I should’ve.
Knowing that I’m going to a conference, I’m sitting there looking around for a sign that someone else on this flight is going for the same reason. No luck, and I guess that’s one of the facts about this cancer, you don’t know if someone else has had it. There’s no tell-tale signs. Some pretty attractive ladies nonetheless!
This flight has those new slim seats, I actually think they do provide a bit more knee room, thank goodness!
My chariot arrives!
Some loud and obnoxious kids…so glad for noise cancelling headphones! However, my Zune doesn’t appear to want me to play games and listen to music at the same time. #sad. I suppose that’s why I’m writing this though!
I’ll continue when I get into my room. The real adventure begins bright and early tomorrow morning!
As we’re landing in Denver.
Friday, Oct. 17th
Whew. After waiting around at the airport for the hotel shuttle for 85 minutes, then calling the hotel to find out we were on the wrong side of the terminal, finally got to bed at 1am this morning. When we got to the registration desk, I saw this:
It made me wonder why there wasn’t one for Thyroid Cancer donations as well? I mean you have a conference going on in your hotel all weekend…
Woke up at 6am to take my meds, got ready and met my Dad downstairs at 7am to get the rental car taken care of but the lady was nowhere to be found, so we got some food at the restaurant. That was not that great. Finished with that, got the car, made our way over to the ballroom to get checked in for the conference. A lot of people in a small room…
Took our “goodie bags” and Dad took a bunch of literature and other information, went up to the room to relax for about 20 minutes before getting the party started.
What can I say. The open mic session was the first session and what a good way to start. Several people went up to tell their stories, I was just about to go up there to share mine, but time had ran out. That’s not something I would normally do in front of a room of strangers, but there was something comforting about it. Maybe next time. I would’ve enjoyed staying in that room and listening to every share their stories for a couple more hours, really touching.
Next session was with an Endocrinologist that specializes in thyroid tumors. She spoke about managing your TSH with thyroid cancer. Very informative and lively discussion.
Next session had to do with lymph nodes, the first part was pretty technical and had me a bit lost. However, having someone show us and talk to us about what they look for with an Ultrasound was awesome. Being able to see the screen during an ultrasound and having no idea what they were looking at or how they know what to look for was a great mystery to me. I’m glad she talked us through it. After a while it opened up to questions and got more interesting as well as showing diagrams of the various neck compartments and other structures of the neck. I looked at my surgery and pathology report numerous times during this session. To compare what she was talking about and what I went through.
After this one went a bit longer than it was supposed to, we made it over to the quality of life with thyroid cancer session. To my surprise it was a doctor from Chicago discussing some preliminary results from a survey I completed last year. I was 1 of 101 males that responded while they had a little over 900 women respond. I remember filling it out and bring pretty excited to be a part of it, and then to hear some of the results in person only validated that excitement.
After that was concluded we made it over to a session talking about Cancer survivorship, coping and the ling road ahead. Interesting talk from a two women, a surgeon who had several patients in the crowd and a Nurse Navigator. The Nurse Navigator is someone who helps patients make their way through treatment, goes to appointments with them, and makes sure they’re asking the right questions. I can’t imagine how awesome it would’ve been to have someone like this while I was going through my treatment.
We kind of decided to skip the last session for the day as I wasn’t terribly interested in any of the topics and really hungry from not eating lunch.
We found a little barbecue restaurant a couple miles away, pretty good food! I wasn’t ready to head back to the hotel so we went for a drive towards the mountains, went up to lookout mountain, but it was getting dark and frankly I had no idea where we were going, lol. We made our way over to downtown Denver, stopped over at Mile High stadium took a couple pics,
Finally worked our way back to the hotel. Dad went to his room, but I didn’t feel like staying in mine so early, so here I am people watching in the lobby and typing this up!
Tomorrow has a couple of sessions that are going to discuss voice issues, I can’t wait for those!
Saturday, Oct. 18th
Last night was weird. I was awoken at 1am to some acid reflux or something which is pretty terrible when you can’t get a good strong cough and fluid or whatever it is gets into your airway. I ended up throwing up a bunch of times, but while dealing with this hearing a bunch of yelling in the hallway. Uhhh, what? After my issue, I opened my door to find this chick pounding and yelling in the door about two rooms down. She wouldn’t stop, I asked her what she was trying to accomplish but all she said was she wanted me to come down there and ask her. She had to have been drunk off her ass. Wearing jeans and a tank top, and shoeless. I went back into my room to call down to the front desk, but they weren’t answering. I kept hearing this girl and then a male voice, so of course I had to go find out. He was telling her to calm down and stop pounding on the door or he was going to forcibly take her down to the lobby to talk to the police. She didn’t believe him. He told her that there was no one in the room, so what the hell was she trying to do? He picked her up and dragged her down the hall and into the elevator. I went back to bed. 6am came really too quickly…
The last two days have blown my mind, and there’s still one more to go. It’s comforting to know that there are other people out there that know what you’ve been through and are going through. They WANT to listen to you tell your story. They WANT to ask you questions. They WANT to learn from you. Just as much as I WANT to learn, listen and question them. I had no idea it would be like this.
Dad and I got an early start and headed to IHOP (I know) for breakfast before the first sessions at 8:00. A discussion on Contemporary surgical treatment including approaches to potential voice and swallowing complications. Fairly interesting discussion, but of course I was interested in the voice and swallowing discussion, which was touched on towards the end.
Next up was a talk on disease monitoring and when they’ll tell us we’re “cured”. I enjoyed this discussion as he talked about the different risk groups and how they pertain to the chance of recurrence, I’m in the high risk group. Which means that I’m about 20-30% more likely to have a recurrence in the first 5 years. I was already aware that I was high risk as that’s why my TSH is being so suppressed. However, I didn’t know the percentage of chance for recurrence.
Next session we chose was learning about the importance of ultrasound in long term management of papillary, follicular and medullary thyroid cancers. Interesting, but wasn’t my first choice. The one I was more interested in was full by the time we got there.
Next class was learning about evaluating nodules and diagnosing thyroid cancers and recurrences. This guy seemed really smart. A bit technical but again, interesting, especially with the discussion on recurrence.
The next session was a bit misleading with the title of it. Essentially the title said we would be able to express our opinions on the current protocols surrounding radioactive iodine treatment and how people are being released out into the public while being radioactive. Hint…radioactivity can cause thyroid cancer. This is bad. The hospitals really should be isolating the patients in the hospital for 3-4 days instead. However, the insurance companies won’t usually pay for this. What really happened in this session was an older lady that works at the US Nuclear Regulatory Commission told us that they’re working on creating updated regulations and recommendations for this treatment and it’s going to be open for public comment in 4-5 months. I was a bit disappointed with this session.
The second to last session for the day was ALL about voice issues. This is the one I wanted. The one I was so excited for when I saw it was added to the schedule. The doctor running the session was funny and personable. I was able to share some of my issues and treatments I’ve had, then he asked where I lived, apparently he knows some of the voice surgeons in Seattle. I’ll come back to this in a moment though. At the end of the session the lady I was sitting next to started talking to me and told me that she too had to go through a long period without her voice, but that it got better with her treatment, but she was breathing problems now. We kept talking for quite a while, this was the first long conversation I had with someone here and she and I shared a lot of experiences after our original surgeries and how much your life changes when you lose your voice. This is something that only a person that has experienced it can sympathize with. Really touching. The session wrapped up, and Dad and I were going to leave, but decided to stay for the next session with the same doctor.
We took the same seats we had, this discussion was going over the results from a survey that I vaguely remember filling out concerning complications after radioactive iodine treatment including, dry mouth, dry eyes, swollen saliva glands, changes to taste, etc. The lady from the last session stayed as well, so we chatted about this topic too. She’s had to go through this treatment twice. Damn. I shared that I think I filled out the survey, but I was sure if the RAI had caused dry mouth for me since I was forced to breathe through my mouth due to the horners syndrome I was gifted after my surgery. This got the doctors attention and wanted to know who my surgeon was, I told him I have my surgery and pathology reports, he was excited to read them! After the session was over he had a couple other people ask him questions then he started reading over my reports, I showed him the picture of my neck prior to getting it cut out. He said I was really lucky to be the age I was at the time. As mentioned above he wanted to know who my voice doctor was, he said he was just in a program led by Dr. Merati last week and that him and Dr. Hillel know each other as well! He continued to tell me that they were two of the best voice specialists in the country. Man, that was a good feeling.
Before that happened the lady I was talking to shared her contact information with me so we could keep in touch any time either of us needed someone to talk to. Pretty awesome. After the doctor had left another young guy from L.A. came up and introduced himself as he said it’s pretty rare to meet another young guy that’s gone through this and he couldn’t help but say hi. We ended up talking for about an hour about our experiences. That was awesome, and man, he has been through a lot for being only 29. Truly inspiring. We exchanged information as well to keep in touch.
Dad and I finally dropped our stuff off in our rooms and headed out to get some dinner. They had a banquet/auction thing tonight, but I didn’t really think I’d be interested. We ended up over at a pizza place that’s really similar to Mod Pizza, but not as good. Still good though. Got back to the hotel after finding a store to get some water and small thing of milk. Ended up in the room talking for a bit. It was a good talk! I decided to head back down to the lobby, with the intention of writing this but a gentleman sat down at the table and started talking to me about my voice issues. What a great talk we had. He has implants on both vocal folds and was very familiar with the issues we’ve both been through with our voices. I think we talked for about 30 minutes or so. Great guy from Kansas, really glad he sat down to talk. It was his first, but not last conference as well!
And now here I am. It’s almost midnight and I’ve got to wake up at 6am again. This has not been a weekend for good sleep that’s for sure!
Sunday, Oct. 19th
It’s all wrapped up. Today was a short one, went to only a couple sessions, and by a couple I mean 4, which were mainly roundtable discussions. The first one was regarding coping with thyroid cancer and the side effects from treatment, which I was able to share my voice and Horners Syndrome issues. Next up we learned about new indications and research regarding radioactive iodine ablation. After that we had a discussion on thyroid hormone replacement and how much we should be taking. Interesting talk that touched on using brand name vs. generic as well as some other types. We skipped the next session. I ended up going to the roundtable for young adult survivors next which talked about the key issues we’re having, as well as comments and suggestions about the conference. I didn’t really add much to the discussion, since it was my first time. Going there really had me regretting not going to the young adult mixer on Friday evening. What a diverse group of individuals, granted there was only two guys there that were survivors and a bunch of women, which is generally the case for all the sessions, but the other guy was the one that introduced himself to me last night. It would’ve been nice to get to know more of them before the end of the weekend, as many of them knew each other already from previous conferences. When I spoke up one of them asked me where I was before! I mentioned that I wasn’t sure if I was really considered a young adult, to my surprise though, it covers people up to the age of 40. Good to know. If I’m able to go again, I certainly will take part in more of the young adult activities.
Finally, to wrap up the conference those that were still remaining all gathered to share our comments, suggestions, dislikes, etc. about the weekend. As well as have a raffle, of which I didn’t win, can you believe that?
Dad and I headed out to get something to eat at SmashBurger then went for a drive to nowhere. Just got back to the hotel. It’s certainly a lot quieter than it was before!
I REALLY hope I’m able to attend next year in St. Louis. The best way to describe it is like going to summer camp for the first time. You don’t really know anyone except for those you came with, or in this case those that you’ve met at the local support group. Slowly though, you get to know some other people, share your stories, talk about your issues, share contact info, then bam. It’s over. Time to go home. And you wait until you get to see them again next year. I’ve missed that feeling of summer camp for the longest time, and I think I’ve found a way to get it back.