Underwear, Pain, and the Plan

Of course I'm not going to tell you what you want to know right off. Then you wouldn't read the rest.

Today my sister was stuck doing a marathon of laundry. With my unplanned hospital stay and all the other drama lately, laundry had completely fallen by the wayside. This fact became vividly clear when I realized I only had one clean pair left. Not good.

I recently read a hilarious and insightful post by a friend about having to go sans underwear "briefly" (pun mine). She raised some excellent points. However, she did not touch on my particular issue. Some of you may be familiar with what happens when you unexpectedly cough or sneeze. A certain, shall we say, dampness? Or, as the Facebook meme puts it, "I laughed until tears ran down my leg."

Now if a cough/sneeze/laugh has that sort of impact, extrapolate what might happen when someone, even someone you love dearly, is snaking a thin tube down your windpipe to vacuum out your lungs. When such vacuuming induces you to cough hard enough to force something roughly the size of a baby gerbil up through a steel tube that has an opening about the size of a jelly bean. Commando is not an option.

But the underwear problem is solved. Hopefully the pain issue, too.

Last night was a bad, bad night. The whole day I was off, which was my own fault. Didn't eat on a schedule. Didn't take my meds on schedule. Didn't do my PT/OT. Failed to do those things that I can to help myself. And I paid dearly. By dinner time, I was miserable. The pain was high.

After dinner I crawled into an epsom salt soak, which made me feel better. Unfortunately, since we have but one tub/shower, I could not stay in there for very long as Karissa also needed to bathe. As soon as I got out, things began to escalate again. Kelly gave meds, but it was too little, too late. The pain was ahead.

When I still had a tongue, I used to get cramps in my tongue. Just like those awful cramps you get in the arch of your foot, or your calf, that jar you from a sound sleep, only in my mouth. And it would also slur my speech. I was always terrified it would happen well subbing and they would think I was drunk. That was pain.

The first time I had a nerve hang up in my jaw, I literally ran around in a little circle like a dog chasing its tail. The pain was so intense that I had no idea what to do. I couldn't even think. But it only lasted maybe 30 seconds. Over time I learned how to relax my jaw a little bit when it started so I could shorten the duration and intensity. That was pain.

Last night I hurt.The tumor hurt and magic mouth wash did nothing. My shoulders ached. The nerves in my neck around the trach tube were all screaming. My jaw ached. I found myself rocking in pain. Lying crouched face down on the bed shoving my forehead into it trying to get my head up enough to stop the trach digging into my neck. At one point, nearly writhing in pain while Karina held one hand and my sister held the other. Despite major surgeries only taking Tylenol and all the rest, I never felt this terrible.

I have often wondered how someone knows it is time to give up. Don't freak out. I wasn't at the giving up point. But for the first time ever, I could see it from there. I could see where the pain could reach a point where you just couldn't endure it any more. Now I understand.

Fortunately, I am married to a man of many talents. He managed to work out the magic amount of anti nausea meds and and half dose of hydrocodone. This, coupled with heat on my back, ice on my face and the other meds I had taken finally took the pain down to a manageable level. I slept well until four am and then he got up and gave me another dose. Thank goodness for my husband, again!

It taught me a valuable lesson, though. I cannot be cavalier about the daily schedule. I am no longer that girl in fifth grade that could go all day on just a half- pint of chocolate milk, or the high schooler living on cheese fries, or even the broke single mom subsisting on five for a dollar mac and cheese. I have to eat on schedule, the best food possible. I have to get up in the morning, not lie in bed and futz around on facebook for a couple hours. In need to take my medicines on schedule, do my OT/PT and get myself outside to walk around. I don't need to pick the tomatoes that require acrobatics, or run a marathon, but I need to not act like I'm helpless to make this more bearable.

For those of you who have ever started an exercise program and then taken some "time off," you will understand my experience with following my plan today. When you stopped exercising, maybe you could do thirty crunches, but not that you are back to it, you can only do ten again. That is kind of what this morning was like. I used to be able to get my head up more than this. I could turn a little farther. Dang it! I hate it when I sabotage myself. But starting over is the only place I have to start, so I did.

Tonight is a better night. My neck nerves are still serenading me a bit and my jaw is a bit achy, but not terrible. Tolerable. And it is time for meds again, which means I haven't let it run away with me. And, it I stick to it tomorrow, I will get a little better. Why is this so hard for me to learn???

So the plan. What you've all been waiting for.  We met with Dr. B. He was somewhat flustered. Sorry to hear that this is back so soon. I spoke to Dr.A. and we discussed the Gemcitabine. Not a lot of other options. How did you discover this tumor? Kelly is telling him the story and he gets a call and has to leave the room. Fine. I've been that phone call. When comes back, Kelly finishes up. Again with sorry to hear that news. He has his standard handout for us. But there is a small issue. Gemcitabine for head and neck cancer is off label. The insurance may refuse to pay for it. Then he would have to talk to someone and they couldn't proceed until it was cleared up.

Um, no.

While I doubt the insurance company is going balk, they may. We will pay out of pocket. We will do what we have to. I don't have the time to wait around.

Friday is go day, whether the insurance company is on board or not. Every Friday afternoon for three weeks on, then one week off, then go again. We keep going for a) as long as my body will tolerate it, b) they can show/see that the tumor is in remission or c) some better/other treatment comes along to try. It is a thirty minute injection, so with pre-meds it runs around an hour. Since I already on steroids, I don't need those that day, so one less bag for them to hang.

Before he examined me, I told him it was very important to me that he believe in me. That he believe that this would work for me. He seemed quite taken aback by this request and kind of stumbled out and answer along the lines of we always hope it works, but better to be pleasantly surprised than horribly disappointed.

He did ask me to lie back before his customary poke in the shoulder. He raised the table back for me after a bit of flailing on my part.The exam was fine.

He felt like, despite everything I've been through, that I am still it pretty good shape. Reasonably young healthy. That I could probably live with this a while since I have a feeding tube and a trach tube, there isn't to much the tumor could close off that would be life threatening.  He kind missed the whole possibility of metastasizing to my brain possibility. I guess that is a positive outlook.

He summation of the side effects and risks don't match up with what I've read online, but he has given this drug to many other patients, so we'll hope he is right, that the side effects are generally minimal. Some nausea. Occasionally a fever spike. The usual suppressing your blood counts, beating up your liver, that comes from most chemo. He didn't need to restrict Ibuprophen. As for vaccinations, he said I would want to avoid someone who had a recent live vaccine, particularly something like the shingles vaccine. Flu shots fine.

When we left there, we went to Heather's. She set me up with the herbs I need to help my body cope with the chemo. She has such a depth of knowledge, it is a good comfort. So the groundwork is all laid.

Tomorrow I see Zachary for acupuncture, which should bring me some relief. Friday, I see Karen for PT for further relief before my first dose Friday afternoon. In between, I need to do the things that I can do to make this as easy as possible.

Easy isn't probably the best word. If this truly is my last hurdle to get over, as I have continued to get the sense that it is, I should have figured it wouldn't be a rail lying on the ground I could easily step over, no matter how many of you are wishing that for me.

The party starts Friday. FTFF and be done with the cancer once and for all.

Oh, and I'm going to teach Karina and my sister to make jam, whether they like it or not;)

Until tomorrow,

With love, hope, prayer and plans for the future. Hear my voice.

Love,
Kiara