Back to "Normal"

It is Friday. I've had three days with no chemo, no radiation, no scans, to doctor appointments, etc. I would hesitate to call this my new normal, though, as I am not magically all better, pain-free and filled with boundless energy. Harrumph.

So I knew I wouldn't be all better right away. I'm not that delusional, even with chemo brain. Wednesday I thought maybe I was better enough that without having radiation, I didn't really need the muscle relaxer/Motrin combo that has been a staple of my afternoons. I was wrong. Very wrong. And I paid for it. Most of my neck muscles have been cut through/into twice and radiated. They don't appreciate this and they express their displeasure by clamping down tighter and tighter. It wasn't pretty.

I didn't repeat that mistake.

I have spent some quality time with the epsom salts in the bathtub. It would be more beneficial if I could actually soak my neck, but since that would entail drowning, I won't be doing that... I also use the heat up on my shoulders/chest and ice on my face to try to keep the lymph moving through whatever nodes are still speaking to me.

Yesterday I spent three hours at the herbalist/nutritionist. She is planning out my detox and recovery and helping figure out a strategy for eating to maximize my nutrition for healing. She also made me some herbal medicines to move the process along. A spice blend to add to my breakfast to boost my energy. An oil to rub on my scalp and brows to deal with the dry skin and promote the hair growth.  A spray for my face to clear up the chemo damage. She went through all my blood work, my eating diary I kept for a few days prior, and all the notes she had from my previous visit. She isn't a doctor, but it sure is nice to get someone to spend that kind of time helping you.

I had an eating moment last night. I wish I could figure out what causes them. Out of the blue I had a flash of eating out at a favorite local restaurant. I could picture it, right down to where we were sitting and the food on my plate. And then the emotional spiral. It is strange, because a lot of the time it doesn't bother me very much. I can even look at recipes or people's food pictures on Facebook, but every once and awhile I have that "never going to moment" and it gets overwhelming at times.

The truth is no one knows what the future holds for me. Provided this got all the cancer, my body will heal and change. I still may never swallow again, but then again I may with a lot of work. I may be able to loosen my jaws up enough to take normal size bites of food and then spit them out. Right now it is so hard to get food into/out of my mouth it isn't worth the tasting. And maybe neither of those things will happen and I will just learn to love the syringe.

Of course, if it didn't get all the cancer, then we are back to the old drawing board, as they say. I have been very focused on the positive. The cancer is gone. I believe that it is and I tell myself over and over and over. Most highly perceptive (channeling) type people feel as if I am going to come through this. Cancer has blindsided me before, though, so I try to be a reasonable mixture of positive and realistic. Realistic is not my favorite.

I've been using the Dynavox more. It still isn't perfect for many applications, but I am looking forward to being well enough to using it at a Stand meeting, a PTO meeting, maybe at a gathering of friends. Clearly my life is going to be a mixture of communication tools, though. We have mastered the ASL alphabet but Karissa has a hard time figuring out what word I am spelling. This isn't that useful. More frustrating is when she can't figure out what I wrote down. Sometimes it makes me want to bang my head against the wall. I am hopeful when we learn more sign language for whole words (which Malia tried very hard to get us started on) that it will go easier.

Another language issue came up. Karissa has to learn a list of ballet terms. I have two years of high school French. I know how to pronounce them. Not so helpful. I got her to make flash cards, but I still need her to be able to say them. There is a French voice on the Dynavox, but I don't know that it actually 'speaks' French. Goodness knows the English pronunciation is often pretty bad. Then in a flash it occurred to me. I know a French teacher. Yay! Sometimes having a card catalog for a brain is a good thing. Retrieval time can be slow, but all the info is there.

Oriana brought dinner on Wednesday night and stayed for a nice visit. She caught me up on the doings at the synagogue. We did touch on the nightmare that is Gaza. It is all so "War Games" to me. No one is going to "win" this. We (people of Earth) spend trillions of dollars on killing each other. Can you imagine if we would ever put aside our differences and used all that money, man power, planning, machinery, etc. to improve lives instead of killing each other? The messes we could clean up. The people we could feed and educate. The infrastructure that could be improved. In my little fantasy land, we work together for the common good instead of killing each other in the name of religion/oil/land rights/disputes, etc.

This morning I had physical therapy. Thanks to an extra goopy night, Kelly had to pull the trach and clean it before we even went. Ugh, but nice to be clean. Today was the first time I felt like I was at physical therapy to move forward rather than to just try to stay functional. Because I haven't really been able to exercise, everything is kind of weakened, even my feet. I am bent forward from the tight neck, the trach, the trach wound, and the delight that is radiation. I cannot lift my head up all the way, so I've been bending my back in strange ways to compensate. She straightened a few things out, especially my feet, and did lots of draining. I hope that feeling better and doing more will go hand in hand.

Eileen came by with some basil and plums. She brought the Stand and 4j news. She is going to run for the school board! Yay!!! She will be great! We threw around some superintendent names, but sadly they were probably all wishful thinking. This is an unusual district with individual schools having far more autonomy than in other districts I have seen. Whomever is hired will need to find a balance between "this is the way we've always done it" and the changes that need to be made without alienating the parents or staff. This has proven to be even more difficult than one would expect.

I am at a dangerous part of the healing process right now. I want to push myself. I want to be better. I am already mentally less foggy. This lets me see what needs to be done, but doesn't necessarily mean I have the energy to do it yet. That is frustrating. I cannot ask one more thing of Kelly as his platter of tasks is overflowing. I may ask someone else, but it may/may not get done, or it may not get done the way I want it done. Argh. Can't I just be all better already?!?

Reggie comes next week, Karissa has day camp and Karina goes to work, so Kelly should get a break. Hopefully I will continue to feel better and am able to be at least somewhat helpful. I cannot control the outcome of the PET in three months, so I need to live each day looking ahead and not worry about it. Easier said than done.

Until tomorrow,

love and hugs

Kiara