A few disclaimers

We've passed around this blog address to some new people today. I feel like I need to kind of give an overview before I launch into last night's drama. Oh, of course there was drama.  Why are you surprised?

This blog dates back to my open heart surgery in 2007. If you want to know what it feels like to have an open heart surgery, or to be in right side heart failure, start there. In 2008, I had my first bout of tongue cancer. If you start there, you get to hear about a partial glossectomy, a right side neck dissection, how freaking scary Jello can be, and what it is like to stick your head in the microwave oven for 30 radiation treatments. I opted not to have a feeding tube, a decision I know was a poor one in hind sight. I had a bilateral breast reduction in 2009, which made my life infinitely better, but you might not be interested in that. In 2013, I was diagnosed with cancer of the tongue again. In October, I had a total glossectomy, free flap from my back, bilateral neck dissection (all clean nodes), feeding tube insertion, and trach. Starting in November, I learned how to blenderize my own food for the feeding tube, got my trach out, and learned how to speak surprisingly well. Not great, but far better than expected. If you are interested in feeding tube foibles, start there.  In late February, another small cancerous spot was found in my mouth. The ensuing PET scan showed new tumors in my larynx. These first froze my vocal cords and then began to close off my airway. As of today, I am at OHSU with my brand new trach gearing up to do radiation again and chemo for the first time. I believe the third time is the charm and I'm going to win this time. I have walked a road through Hell a few times, so if you are easily grossed out, you might need to look away. No one loves to talk more than me, so this blog is my outlet, my voice. If it helps, that means a lot to me. I like being useful.

Ok, so back to last night.

My apologies to those of you who thought I didn't post last night because Kelly and I were having a relaxing evening hanging out watching TV. Sadly, no.

I was coughing yesterday. Coughing and coughing. And it got worse. I thought maybe it was the trach cuff. This is the inflatable part of the trach that stabilizes it. Once it is deflated, it usually is more comfortable (in my limited experience). We tried deflated, inflated, deflated. The coughing continued and got worse. I really felt like something wasn't right. I told Kelly something wasn't right. I asked the nurse. Still the coughing got worse. The nurse called the ENT team who decided to come down with the scope. If only I had know what that was setting in motion.

The nice ENT residents fed the camera down my trach. One looked. The other looked. Looks crusted shut. Two vials of fish dumped down. Fish are little vials of saline that loosen stuff up and make me cough. Not pleasant, but not the worst thing. No luck. They tried using the tip of the camera to scrape it loose. No. They started to wonder if it was in a "false passage." No idea what this means, but know that it is getting harder and harder to breathe. Now I have four nurses, two ENT residents, someone from respitory therapy, the RRT (rapid response team), and Kelly all in my room. This room is not that big.

I am going down to the OR so they can replace my trach in a more controlled environment. You know on TV shows where they run pushing the gurney to the OR. Sort of like that, except it is hurry, stop, hurry, stop, hurry... you get the idea.

After the elevator ride, meeting two or three people along the way, they push my hospital bed loaded with crap (oxygen tank, portable suction, portable vitals machine, oh, and me) into the OR. I climbed from the bed to the operating table. Blessedly, the back comes up. Who knew? I was reaching a fairly high state of panic at this point. When I looked over and saw Dr. A. the relief washed over me. I knew it would be okay.

The residents started scoping again and it was determined that the trach had in fact dislodged and was now sitting in soft tissue, which is why I couldn't breathe. While one doctor held my head up and my mouth closed, they pulled that tube out, and inserted something else to maintain my airway. Not one bit of this was particularly pleasant. At that point the called for the anesthesiologist to knock me out. Yay for OUT.  I vaguely remember someone putting my hair in a pony tail. Then, bye-bye.

This fun all started around 8 pm. I hadn't eaten my dinner yet. I had this great blog post in my head about all the ponderings I had had during the day. The lovely hummingbird we saw on our walk. My continuing surprise at peoples fascination with my bowel habits. The epic swelling. Nope.

Today is a better day. I have a special trach, an XL. Not only did it solve the other major issue, it seems to allow me to lift my head more, which is a good thing. I have had a steady stream of visitors today. The anesthesiologist asking if there is something they could have done differently. Physical Therapy to try to help me with movement (she has also been working diligently trying to get the lymphodema specialist to come see me). Rachel from speech. The dietitian. Several of the nurses from last time have been around, hence the disclaimer at the beginning. I was lucky that I had Serafina to walk me though some parts of this journey, so if I can help someone else that way, it is the least that I can do.

All that being said, I am kind of tired of being the outlier. I don't always want to win the one up. I am tired of being the worst case scenario game personified.

Still, it can always be worse, so I thank my lucky stars for so much!

Today I get to cough up nasty anesthesia again. I'll continue to wonder why the seasonal soup is offered on the pureed menu when it isn't actually pureed. The glorious sun is pouring through the huge windows in my room with a spectacular view of Portland. The dancing pumpkin is making me smile. My amazing husband is here taking this "exceptional" journey with me, and my wonderful Karina is at home holding down the fort. If they aren't going to spring me tomorrow, hopefully she and Karissa can come up and see me. Not exactly at trip to the zoo. Well, I kind of look like I could be in the zoo. Or more likely Ripley's Believe it or Not. I can't bring myself to post a picture. It is too much. Maybe I should post a before picture so the folks here at OHSU would know what I'm supposed to look like. That they've never seen.

I am still allegedly starting chemo and radiation on Monday, but they may need to make me a new mask and remap my radiation to accommodate my big, giant head. Another mask. How fun!

Barring any further drama, until tomorrow...