Updates and thoughts

First I have to start out with something I forgot to include in my last post. Our condolences go to Heather and her family. They have done so much for us and I have no idea how we would have gotten through the last few months without them. They had to start their summer off with the sad task of saying the long farewell to Cyril. While many of us have walked this sad path with our pets, Cyril wasn't just a dog, or just a pet. He was Officer Kendrick's K9 partner for many years. It has to be that much harder to say goodbye to someone who had your back, or even your front, many times over the years. Big hugs and endless Kleenex to this wonderful family and rest in peace Officer Cyril.

Also, while you are saying prayers, or sending good thoughts, I would also ask one for my friend Lisa's brother. He experienced complications during surgery and is currently in a medically induced coma. She has flown to Amsterdam to be with him. Lisa is a doctor and has spent many years working in hospice care. If there ever was someone who deserved some TLC, it is her.

Sorry to start out with the heavy stuff.

As for me, Karen did lots of release work on Friday which allowed my mask to go on better than it has in, well, since they made it. My nose was still squashed, but everything lined up to the millimeter and no stops. #14 done. 11 to go.

I have some chemo rash on my face, but it has largely confined itself to the creases on the sides of my nose and my upper lip.  You know those terrible little pimples you get right next to your nose that hurt like the dickens but there is no way to get at them except with a tweezers. Yes, you know exactly what I'm talking about, even if you won't admit it. At any rate, it is far more tolerable than the vomiting and other joys that came with the heavy dose chemo.

My neck is spectacularly tight, so my face is very swollen again today, although both my eyes were open this morning, so that is an improvement. No treatment for two days, but heat packs and ice continue in the never ending battle with body fluids and muscles. I have to say a special word of thanks for muscle relaxers. I don't know how I'd tolerate it sometimes without them.

I got up and showered and got dressed this and was feeling quite pleased with myself. A clog in the feeding syringe wiped that smile right off my face, and completely covered my clean clothes and self with prune juiced oatmeal. Lovely. I keep thinking I know what a clog feels like, but then this happens again. Sigh.

When you have cancer, people send you lots of information. Cures, treatments, stories, suppliments, etc. that have worked for someone, or that they read about, or... you get the idea.

The thing is, a lot of people, including me, know someone who was given "their expiration date" by the doctors and went on to beat cancer another way. The woman I know didn't have any treatment and didn't do anything special, other than deciding to go on living. Fourteen years later the doctors have no explanation for why her cancer just stopped.

I also know people who had extensive medical intervention and beat the odds despite having been given one of those 5% chance diagnoses.

But other people know someone who beat it with a marijuana derivative. Or herbs. Or massive doses of vitamin C. They know real people who are still alive who used alternative treatments and their cancer went away.

There have been rumors for years that there are plenty of natural cures for cancer, but this information is repressed because there is no way to make money off it. I find it hard to bring myself to be that cynical, but then you look at events like the Holocaust, or the fact that cigarette execs lied for years to protect profits and you realize there is quite a potential for evil in man kind. What do you think?

And, if I am Joe pharmaceutical company mucky-muck and I know these cures exist, is there some secret lab for me and my loved ones to go have this treatment? And how does someone not only let people needlessly die, but worse, put people through treatments with horrible side-effects that sometimes don't work, when there is a simple cure, all in the name of money?  Again, what do you think?

I have become an observer of much of late. Part of that is a natural byproduct of not being able to speak, but also because I no longer eat by mouth. A lot happens when people eat. Many of my friends and family have struggled all their lives with eating and weight. Some are yo-yo people, whose weight will go down for awhile on a new diet or with renewed discipline, while others just edge up year by year. I was a yo-yoer, losing and gaining the same 20 lbs over and over. Not that I ever got down to anything approaching ideal body weight. Even after losing so much the first time I had radiation, I was comfortable with those 30 extra pounds I put back on and never dreamed that 140 was ever in the cards for me.

Not that this is the way I'd want to get there.

When I observed my student teachers, I could always see the mistakes they made that I made myself, yet I couldn't recognize them when I was committing them. Eating is the same. I never realized how much I mindlessly ate until I could no longer put anything in my mouth. A few jelly beans. A piece of chocolate. Tasting while harvesting, while cooking, while preserving. A snack at the Dairy Mart. A plate full two sizes too big at the restaurant. It all added up. And up, and up.

Now it is all about volume for me. I have about the same amount of food at every meal, even though the calories are widely varied. If I continue to put in too much volume, I get that icky overfull feeling. Worse, if I really push it, it will leak out around my stoma, and that my friends, is pretty much just gross. So a salad or a smoothie might not be very many calories, but I will have to have at least two pieces of chicken in there to get up to level.

I notice now that many people do no have that volume setting and they are members of the mindlessly putting stuff in your mouth club. It is so easy for me without the lure of taste. If something tastes good, or bad, it doesn't really change how much I want it. My lunch the other day contained tomatoes, olives and avocado, all in a mushroom broth. Pretty much the top of the list of foods I don't like. But I don't have to taste them, and once it is blended up, many blends look the same.

Don't get me wrong, I miss eating. I miss the camaraderie. I miss the taste. Most of all I miss the textures. But if there is a silver lining, it means I never have to think about dieting again. It means that food no longer has those guilty strings attached to it. It means that the most important thing about what I eat is the quality of the food, and the quantity, not the emotions. I guess that is a gift.

Not unlike miracle cures for cancer, there are lots of other stories that get passed around the internet on a fairly regular basis. One is about a supposed retired Army psychologist who was privy to top secret research that showed when they cut the hair of Native American trackers they lost their tracking ability. This led to a big experiment that showed that the Samson effect does exist and, based on this, the psychologist never again cut his hair.

Sounds interesting, but I really never gave it too much thought. However, since my hair fell out, I have bumped my head far more times than I care to admit. It is like I have lost any sense of spacial relations for my head. I hit it on the counter when I bend over to get something. I hit it on the shower door turning around. I even hit it on the window sill when leaning forward to put the seat down in the bathroom. Maybe there is something to this after all. Thoughts?

Anne was here to visit today and brought the third season of Call the Midwife. I'm going to have to ration it out this week as just lying on the couch staring into the TV will not help the tightness or the swelling. She also brought me a book to read and good, thoughtful conversation. And she scooped, which in Kelly's book makes her the greatest person in the world.

I hope to feel well enough tomorrow to go out and be something resembling helpful during the garden party. I'm good with the pitchfork as long as I don't have to get down and pull anything up. I can get down okay, it is the getting up that takes work. I am kind of tired of feeling like I am 100.

Mostly, at the end of all of this, I want to live. I want to be here to watch my children as their lives progress. I want to be with my husband and to grow old, probably not gracefully, together. I want to be with my friends to enjoy their magical company and support them as they have supported me. I want to be involved in my community to help to make it a better place going forward. To do those things, this treatment needs to work, have worked, be working. I focus on that each time during treatment.

That is my wish. What is yours?

Love,
Kiara