Monday seems forever ago...

Can it really only be two days since Monday? It seems like an eternity.

After a wonderfully good Monday, I was punished. Monday night was fairly hideous. The return of the acid reflux monster, that could only be quelled  by being at a 90 degree angle. I don't know if you've tried to sleep at a 90 degree angle -- think toddler in a car seat-- but it is challenging under the best of circumstances. Add in a feeding tube, a trach tube, and a humidifying mask attached to a big tube and it begins to sound like an essay question for graduate level logistics. So not a restful night. Hack, spew, writhe, nod off, repeat. All night long.

Despite a brutal night, I really felt okay on Tuesday. What did we do on Tuesday? Oh yes. We went to Mia. She is unsure if my numbness in my fingers is from my neck or from the chemo, but the fact that she was able to relieve some of the issues is encouraging. She described my cervical/thorassic muscles as feeling like steel belted radials. When she was finished I could get a finger between my trach tube and my chin. That is huge because usually it is just dug into my chin by nearly an inch. And I could lift my head and not look at my feet. Whoo hoo!!! She says acupuncture is the way to go for this, though, because he will be able to help whether it is my neck or neuropathy caused by the chemo. Zachary on speed text.

We ran a few errands and came home. I nebulized more as we theorized that part of the issue Monday was too dry a trach. And then it happened.

People ask why I need a baby sitter. This is why. Even though it may not happen for days or even weeks. The nebulizer loosened something up. Unfortunately, something about the size of hamster. What a hamster was doing in my trachea, I'll never know (Groucho Marx impression.)

Kelly pulled the canula, but it wasn't stuck in there. Lots of other stuff, but not that. I am hacking and I can get it up part way, but no way all the way and I can't breathe. This is where this always gets exciting. I have no idea how, even with suction, he was able to pull this out. Seriously, I saw it and it was far greater than the trach tube diameter. Something about fluid dynamics, or viscosity, or I don't know. At some point I realized that if this had happened during one of those times I waited in the car, I would have died before he got out to me. I need to learn how to help myself, at least some basics. Or stop waiting in the car...

Disaster averted and we had a nice evening. I was exhausted after a not restful Monday night and no nap and I've been adding about 40 feet to my walk each night. It's not Everest, but it's a start. I passed on the Ativan and opted for Reglan as it usually knocks me out and helps the reflux. Instead of sleeping at a 90 degree angle, I was able to use my usual arrangement of wedge and pillow propping.

Vivid dream, wake up mind racing, remember something important, calm self down, fall back asleep. Repeat. All night long. Some of the dreams were hysterically funny. Some were comforting. Some were healing. Some were just plain weird.

So another night of not the greatest sleep. And I am covered in goo because the humidifyer makes me hack up crap all night long. So attractive. Some person was supposed to come discuss some policy with Kelly, so I hung out in the bedroom extra long, but he was a no show. Free tip, if you are trying to sell someone something, that isn't the way to do it.

I am on low carb all day today in preparation for scans tomorrow. Lots of eggs and meat and  salad.  Not helping the constipation issue. Okay, since I brought it up, apparently I am not the only person on the planet with this issue. Here is my public service announcement. If the Miralax and prunes do not work, nor the epsom salts, the next weapons system is suppositories. There, it is out there in public. You can have a prescription or buy over the counter, but this is the next weapons system up. Think of prunes as muskets, Miralax as rifles, and this is an AK47. If that doesn't cut it, there is another level up. The true nuclear option. The enema. No one wants to say these words out loud, but I can assure you no one likes going eight or nine days without pooping, either. There, I said it and I can't take it back. Do with it what you will.

We ran out and got dog food and cat litter and tooth pulling foods (pudding and popsicles). Karissa came home and we fed her up as much as we could and headed to the dentist, with a stop off at the library for videos. I hung out in the grown up movies and picked up a hold I had as being around kids isn't a great idea for me. I look a bit scary, so people tend to give me a wide berth. If you ever want to try it, go out in public holding a rag over your mouth to catch drool. You will know what a leper felt like.

While Dr.E did his usual efficient job of pulling Karissa's tooth, I visited with the receptionist. Everyone says I am so strong. This woman puts me to shame, by miles. I noticed right off we had the same stylist, although her hat was much cuter. Here she is, working. Make up on. Jewelry. Smile on her face. Maybe pasted on at times, to be sure, but that is more than fair.

She had a double mastectomy and is through five of six chemos. She is working because she has to work. Period. He employer, not Dr. E, but the practice owner, cancelled everyone's insurance, so she had to go on Cover Oregon. While she is glad of insurance no doubt, it doesn't cover any of the extras that I enjoy, like acupuncture. The nausea overwhelms her for days after her chemo treatments. She is on the alternating Mondays from me, which is why, despite the fact that we are there for hours, we've never seen each other. She also lives mere blocks from me on Irving, has a teenager, and is one year younger than me.

That is a brave woman. While I lie on the couch or get helped along by my amazing pit crew, she gets up and gets dressed and goes to work. She answers the phone and does what needs to be done. She is the hero.

Dr. E is also leaving. I'm guessing no insurance wasn't a draw for him either. Sad to hear it as I liked him, but now we will be on the search for a new dentist again.

After the great tooth pulling, we headed home. Kelly got Karissa situated with Dora, ibuprofen and a Popsicle. I met Zachary at the door.  He was impressed to see me on my feet. I forget it has been awhile.

He is the man. Yes, he was able to release a lot of my neck, to the point that I don't have to look at my feet when I walk and I can put my shoulders back. The numbness almost completely left my left hand and there was some improvement in the right. That is encouraging as that likely means it is from my neck and not from the chemo. Whoo hoo. Seriously, if you have to ever have chemo, acupuncture is amazing.

So tomorrow are scans. I would be lying if I said I wasn't nervous. 11:30 check in time means either get up at 5:30 and eat, or don't eat from bedtime tonight until after scans are over. That could be a disaster of vomiting, which doesn't go well with lying flat on your back still in the PET machine. I haven't decided which way to go yet. Of course, if tonight is as interesting as last night, I could just get up after each dream and have a little something. Low carb. Hmmm...

There is a lot riding on these scans. If they say the chemo is doing what it should, then onward to another round. If they show it isn't, we try new drugs with new side effects. I am already on a fairly "aggressive" protocol, so I'd really rather stick with the devil I know, but obviously not if it isn't working.

Friday I get a new trach tube. Kelly changed out my feeding tube valve tonight, so it almost like a new spring wardrobe. I am anxious to see what Dr. A. thinks about how the wound looks. The steroid step down this round took a toll on it. Radiation is really going to reverse the healing process, so we have to get as much healed as we can now. It is not too realistic to just have a big open wound in your neck forever.

It has been nice being able to help Karissa with her homework and eat dinner together this week. Heather and Angie have been such a blessing shuttling her to everything that I had forgotten how long it had been since we were just together. It was also nice for her to be able to just go play with Poppy rather than rush rush rush. I am thankful that her structure has been maintained, but thinking maybe we need to cut back next year. It is hard because she loves doing everything. She is all about the going and the doing.

I haven't made a dent in my Mother's Day cards. Writing with a pen/pencil is hard because of the numbness but I hate sending a card without a note. What's the point? Just mail someone a couple of bucks and call it good. I also have the crocheting project to finish. And the book I just picked up on hold. And keep lifting up my head so I can keep lifting up my head. And the tapestries and the draperies.  Somehow it will get finished or it won't. That sounds like Yogi Berra.

Thank you to all the wonderful people who continue to bring food like clockwork. Thank you to Heather and Angie for being the perfect stunt double moms. Thank you to our neighbors and their children for being so delightful. We not so secretly hope you never move. Thank you to Karissa's teachers and school staff who help make her life as normal as it can be. And thank you to Karina. Your maturity seems to grow every time I see you, even when only a few days pass. I couldn't love you more or be prouder of you.

If I missed anyone else, thank you from the bottom of my heart.

And Kelly, I love you more.

Until tomorrow or Friday,
Kiara