Not My Finest Moment

You already know I was crabby on Wednesday. As Wednesday rolled into Thursday, I was hoping for a better day. I had a morning appointment with Dr. B, my chemo oncologist. This was the make up for the confusion of last week.

We arrived and the nurse was very prompt. They didn't draw more blood, which didn't make me sorry. Blood pressure is 110/70 and pulse was 102. Weight is steady. Dr. B. says the blood work looks fine. I could really do with more detail, but I am tired of asking. I ask him to look at my scalp. He says, "I'm no expert on rashes." But you've been prescribing this chemo regime for many people. Does it look like what other people get or no? He has no answer for this question.

On to the next topic. He does his usual cursory physical exam. I find it annoying that instead of asking me to lie back, he just kind of shoves me. And he always forgets that my neck doesn't bend, so the table and pillow in no way support my head. Fortunately it is a short exam.

Finally, we want to talk about a different muscle relaxer. I've used Flexeril for several years. For most of that time, I only used it on occasion, but lately I've been using it pretty much daily. Now even the double dose doesn't give the relief I used to get. Dr. Uncle Mitch gave us the name of another med. Dr. B., as you might have guessed, is no expert on muscle relaxers. He has never heard of this particular medication, but he is happy to prescribe it. He slips out and brings us back a print out about it. He prescribes the lowest dose. Fine.

We head home. We stop by the Fred Meyer to see if the prescription is ready, but not yet. Kelly will come back and pick it up. Karissa and I hang out at the house. There is some intermittent temper tantruming and refusal to eat. It is getting so very old. When Kelly comes back with the meds, I take a dose hoping for a break from the pain. It seems to help at least as much as the Flexeril does.

In the afternoon, we need to take Karissa for her last day of Ballet Boot Camp. She has an hour and then we are supposed to come and watch for the second hour. We kill an hour in the car sitting the parking garage. Kelly had a nice nap. While the pain is more tolerable, the swelling is still terrible. Why is it when I have to go out in public does my face have to blow up like a puffer fish? My left eye is almost closed and my face looks like a bowling ball. In addition, the chemo gift that keeps on giving has given me a lovely big pimple right between my eyes. Delightful.

The presentation is the kids final exam. They go through all the exercises they worked on during camp. It is very interesting and impressive... and long. Yes, only an hour, but an hour is a long time on a fairly uncomfortable wooden folding chair.  When you have to struggle to lift your head up enough to actually see what they are doing it is a very long time. At last they have their medals and certificates and it is over. It was wonderful and she did a great job and I am so thankful to have been able to be there, but I ache.

The pharmacist said this was an extremely low dose of this new med. Dr. Uncle Mitch usually prescribes 4mg, which is double what I took this afternoon. In desperation for relief, we decide to try it. This, it turns out, was not my wisest move.

I crawl into a hot bath and hope for relief. Relatively quickly I realize that I can barely stay awake. This is how Flexeril used to affect me. After a bit, I realize that it isn't a good idea for me to stay in the bath as falling into a deep sleep would be a disaster. However, I would love to have a good night's sleep.

I made it out of the tub and to the couch just fine. A few minutes later, Kelly asked me to come to the table to finish my trach clean up. In the ten feet between the couch and the table, I almost crashed and burned three times. I can barely stay on my feet. Kelly finishes up the trach and helps me to bed. I was pretty excited about the prospect of a good night's sleep. I thought I would just work my crossword puzzle for a few minutes and then go to sleep. I have to wonder if things would have turned out differently if I had just gone to sleep.

I was lying in bed working my puzzle when all of a sudden everything started to spin. I feel horrible. I clap and clap. Kelly and Karina both come running. Now I am trying to vomit. I feel truly terrible. Kelly runs in some Reglan to calm my stomach, but my head is still swimming. The pain in my face intensifies and the nerve on the other side of my face starts to flare. I am in agony. Kelly is trying everything, suction, heat, ice, comforting. I am drooling. I am miserable. Although I cannot say so, I am afraid I am dying. I considered asking to go to the hospital, but I have no idea what they could possibly do for me. Likely give me some narcotics which would just make everything worse.

I cannot tell you how long this hell lasted. It could have been five minutes or two hours. All I know is that I have never, ever felt more awful in my life. I must have looked delightful, too, as Karina was clearly terrified.

I slept most of the night once all of the horrible settled down. Friday morning I awoke feeling fairly crappy. Kelly went to work and Karina was in charge of me for the day. Her terror from the night before clearly lingered as she never let me out of her sight all day. She and Karissa took me to Physical Therapy (after several dramatic moments over Karissa's refusal to eat). They had to entertain themselves for an hour.

I brought Karen a note describing my misery. She looks me over and gets me right on the table. She spends the entire hour on my face.  She says the nerve was being compressed and she did lots of draining. She warned me I would be spending a lot of time peeing. As the afternoon passes, we spend a lot of time fighting with Karissa about eating in anticipation of her trip to the show with Poppy tonight. I don't feel horrible, but I still don't feel great. My jaw continues to ache. I've been taking Motrin and Tylenol on a rotation, but avoiding the muscle relaxers. In the evening, Kelly and I do manage to take a walk, but I generally don't feel stellar.

In the evening, Karina pulled out the Wii fit for the first time in a long time. None of us has been on it in over a year. My weight was over 31 pounds lower than the last time I was on it. In fact the Wii tells me that I am a little under my ideal weight. Karissa has gained 10 pounds, but when we adjusted her height, her BMI is still only 15. Sigh.

Over night I was up four times traveling to the restroom, so Karen was certainly right about that. My jaw hurts, my body aches, and I cannot seem to get comfortable. Pain and sleep deprivation makes me feel like crap, frankly.

Today I spent the majority of the day lying on the couch, watching junky tv and crocheting. I did go out and pick tomatoes, but that was the only really active thing I did today. I was careful to take my Motrin and Tylenol right on schedule. Still the pain was a bit much, so I returned to my old friend Flexeril and it helped. When the pain is under control, I feel like a human. I feel like a parent and a partner. When it isn't, I can't really see a way forward.

We had a very good talk with Karissa tonight and I hope that it helps. She is so frustrated but doesn't know how to say so. I hope we have been able to give her some tools. We will continue to work on her.

The lazy day rolled into a lazy evening. After Karissa went to bed I stumbled onto a Harry Potter movie on tv. That is what I've been watching while writing tonight. I'm going to keep those meds going and get through the next few days. I know I said at some point that I was seeing Dr. F on Friday. That was chemo brain talking. I would have sworn I was seeing him on Friday, but not. I am seeing him on Tuesday. I am hopeful that he will have some ideas for the pain issue. I have Zachary for acupuncture on Monday, Miracle Mia on Wednesday, and Karen Friday. Hopefully we will be able to get all this under control so I can move forward with my life.

Hopefully tonight will be a restful night and tomorrow can be a productive day. I'd like to make salsa. I'd like to clean out some cabinets. I'd like to help Kelly so he doesn't have to carry everything. Most of all, I'd like to be out of pain.

I'll let you know how it goes.

Until tomorrow...

Love,
Kiara