Here's the Scoop

Yes I will tell you what I know. No, not right first. I have to go in chronological order. Sorry. That's the way it works.

First, the Earth cooled...

Alright. Yesterday morning was scans. It was rough because it is a six hour fast, which isn't bad if it is first thing in the morning, but 11:30 not so much. I ended up going about 19 hours without eating. Not great. Gallons of tea helped, though.

If you have to have a PET scan, Luke at Oregon Imagining is the best. The kindest, most patient, wonderful tech ever. He makes it as pleasant as it could possibly be. Thank goodness for that. First you get weighed and then you get an IV put in. They run in radioactive sugar. You sit in a recliner in a quiet room and relax for an hour while it spreads through your body.

After an hour, Luke took me in and we started the real fun. On my back with my arms up over my head. PET itself is roughly 20 minutes. I did okay. Made it through.  Sat up. Suctioned. Okay.  Back down. Pushed the first iodine contrast for chest CT. Back in/out of the tube with breath holding and arms over my head. Roughly another 15 to 20 minutes. Then he pushed the second iodine contrast for the neck. Arms at my sides, but the IV is being pulled slightly and the coughing has started. I am supposed to  be as still as possible, but my trach is getting more gurgly by the second. He pulled me out once and we looked. I had spewed around a few clots, but none were visible in the tube. He got the basic neck pictures, but by the time he was going to do the zoom shots, I was bleeding pretty heavily from the trach. He said no more.

When he sat me up, I immediately pulled the canula, which was full of blood. It never occurred to me that he would never have seen someone do that. He kind of freaked and ran and got a radiologist, who also apparently didn't know you could do that. When you can't talk and explain things....

By the time we magnadoodled this out, he calmed down. We went back to the dressing room and Kelly gave me a new canula. I'm guessing radiology doesn't usually get laundry covered in blood and goo. Sorry about that.

When we got to the car, I was starving. I had brought some of the more "mature" baby food with meat, etc. Who knew it wasn't as blended as well. I clogged the syringe which popped out and sprayed "gobble gobble goodness" all over me, Kelly and the interior of the car. Lovely. Sometimes, you really do have to laugh.

We got home late and the housekeeper was waiting for us. She went to work while I went to my station on the couch. Wonderful Heather came by with Karissa and gathered her stuff for the sleep over at her house. Kelly tried desperately to catch up on work. Karen L. came by to visit, which is always so fun. There is something about talking about school and kids and teaching that makes me feel alive, knowledgeable, passionate. We always have a great conversation.

Thank you to Tova for delivering our delicious dinner on Tracy's behalf.

After dinner, Kelly and I scurried around loading the car for Portland. I can assure you they landed at Normandy with far less stuff. We finally managed to get out Dodge about 7:30.

I had a little Reglan for the road, so I slept off and on most of the way. We filled a bell cart with durable medical equipment around 10pm.

HGTV is crack, let me just say. I'm glad we don't have it at home or I'd never get anything done. We watched until midnight.

Up in the morning and reloading all this crap. I can only imagine what the neighbors thought as we ran the nebulizer three times and suction twice, including some 5 am trach drama. My apologies to housekeeping for the small chunky red additions to the lovely white bed linens. Yes we left a tip.

We were only six minutes late, miraculously, and Dr. A was only twenty minutes after that, which was great. I am so thankful for him squeezing me in.

First scans. The good news is: mouth tumor is much smaller. Larynx tumors are gone. The so-so news: the trachea spot looks the same. No bigger. No smaller. The verdict, the "disease is not progressing." So it seems likely that Monday will be a fourth round and then onto radiation. I need to get that trachea stuff gone.

There were a couple of other spots that were on both the February scan and this one, in the colon and in my sternum. He said the colon is a common place to have a little uptake, so he doesn't know how concerned he should be. My sternum is likely because of my heart surgery, the bone changes when it heals.

I said I had been having quite a bit of mouth bleeding. We had to have a conversation about what "a lot" means. With me, blood is a lot. Period. He and Kelly bantered about amounts and so on. He said it could be low platelets. My mouth looks the same inside to him, still rugged, but not terrible. However, he also said there are lots of arteries around the neck/mouth and mine have really been beat up. We need to watch out for a "seminal bleed" or a "herald bleed." He said what will typically happen is you will bleed about a bowlful from your mouth and then it will stop. At that point, people think, oh, okay, it stopped. Except the next time it isn't going to stop. So if I have a "seminal bleed," I need to call 911.  Because my neck is so compromised, they would go in like for an angiogram and seal the artery from the inside. He said more neck surgery is not an option.

That is the fun of having a doctor that knows all the possibilities. Nice to know, but once and awhile I'd like to not have any extra scary shit to worry about.

Onward to the trach tube. He asked me about talking. We tried a couple of things and yes, with the trach occluded, I can talk. He pulls out my disgusting old trach. Now I have a giant hole in my neck. I am not kidding you, giant. He looks at it, looks at the replacement trach and says, "Wait right here. I have an idea." Where would I go with no trach tube and a giant hole in my neck? A party?

He comes back with bright shiny new stainless steel trach. Hmm... this is different. He puts it in and checks it with the scope and we try a few things. Yes, I can talk with it if I cover the end. I won't be reciting the Gettysburg Address or anything, but just the ability to make a sound makes me feel so much less helpless.

Not only is the trach stainless steel, the inner canula is stainless steel. That means you clean it and put it back in. I have to say I feel better about that than the 60+ plastic inner canulas I was throwing away each month. Of course, a stainless steel trach is no $20 like a plastic one. Try $400. And they only have a secret stash of them, so he needs this one back. What?

He wrote us a prescription for one so our medical supply company can order it. Then I can either give him that one or he can swap it for this one. Okay. I'm sure my insurance company will be thrilled. Although canulas aren't free, and not having to buy those every month for the obscure trach I had has to help. They were made in Ireland.

I am well on my way to being the Six Million Dollar Woman. My neck doesn't make that cool noise like the bionic woman's did, though, when she was using her bionic ear. Anyone under forty has no idea what I'm talking about.

Oh, and another interesting bit about this trach. Since it is much, much smaller, the chance of clog goes up. Because it isn't plastic, there is a somewhat greater chance that some thing will get stuck at the bottom and can't be suctioned out. If that happens, he told Kelly just to pull the whole trach out. Ew. But, I sat in his office without one and could breathe fine. He said I could probably go up to two hours with it out. He said Kelly could try to slip it back in himself, or we could go to the hospital and have them put it back in. There is an interesting little metal tool that they use to do this that we have now added to our carry everywhere bag. I'm an interesting gal.

All this fun and it is reasonably early. What should we do? I know, why don't we take the scenic route back down the 99? Lovely.

At good fate, apparently.

Karina's jeep won't start. AAA says it's not the battery. Well, we will be passing right through Corvallis...

Looks like it is probably a starter. We had some lunch in Karina's dorm room and she rode home with us. It was nice.

Tonight Karina is taking Karissa to sing with the choir at services. I am once again ensconced on the couch. Kelly is still trying to catch up with work...

In other news, thank you to Heather for being on unexpected pick up duty, two days in a row. And for having Karissa over for a sleep over. And roller skating. And going to the ballet tomorrow night. And....

Thank you to Rebeca and co for being on chicken detail.

Thank you Joell for your sweet gift. I posted something on Facebook so I could order it when I wasn't in the car. By the time we got home, Joell had ordered it and it was on its way. I continued to be overwhelmed with acts of kindness.

Thank you to Karen L. and Anne B. for giving me a good project and doing the leg work for me. The email is written in my head. I'll get it to you to proof next week!

Thanks to all the people who were praying, or sending positive vibes, or whatever you believe in, out into the universe for me today. I know I will not beat this alone. I haven't been alone any step of the way.

Finally, my little bragging moment. Kelly got a promotion at work. I am very proud of him and he earned it. How he continues to put in so many hours a day for work and take care of me and keep up with so much else I'll never know. I have a very amazing husband:)

We are going with the assumption that Monday will be chemo day, Round 4, until we hear otherwise. Then we'll go from there. Not really sure how a stainless steel trach tube and radiation is going to work, but we'll cross that bridge when we come to it.

Until tomorrow,

Kiara