Treatment, Endurance and Perception

I apologize for being off line. It has been a little hectic with Karina coming home for the summer, school for Karissa winding down, Mary here helping out and treatments. I know you just can't wait to hear about this fun.

Tuesday we went in at our appointed time for chemo. By the time they got me all hooked up, it was around noon. There are all the pre-meds- fluids, Benadryl, steroids- to help prevent a reaction. Then we moved on to the Cetuximab. The first time they give it over two hours to see how you tolerate it. If it goes well, the next time they give it in an hour.

Except we are supposed to be down in radiation in an hour.  I guess they will be flexible.

I spent four hours in the chair, three of them with ice on my face desperately trying to take the swelling down enough to get my mask on. Heat up on my shoulders to draw the fluids down. Move my face. Move my arms. Walk around with the IV pump. Stay awake after a big bag of Benadryl...

No apparent allergic reaction. It was reiterated several times that the common side effect of this chemo is a horrible acne like rash. "Like the worst acne you've ever seen." "My skin would peel off with my mask." Doesn't this sound like a hoot?

Down to radiation a hour late. Rick and Renee manage somehow to get the mask on. Yes it is totally squashing my nose and is not terribly comfortable. But it really is for such a short time. They are figuring out just how many of the bolts the have to screw down to get me lined up. Fortunately it isn't all of them. But, like Harry Potter casting his patronus in Prisoner of Azkaban, I knew I could do it because I had already done it. Day one and done.

Wednesday started out fine. No excitement. No drama. We went to Zachary for him to work some swelling magic. He spent a lot of time working on head mobility in addition to draining, draining, draining. He always has some new surprise.

The rest of the day was pretty lazy. Karina and Mary were on Karissa duty. Kelly took me for day two of radiation. Again, it was a close fit, but they got it on. Two down.

Wednesday night was a goopy night. Lots of coughing. Lots of oozing. Yuck. Not so restful.

Kelly was up bright and early. He actually went to work today for nearly a full day. He left right after he got Karissa on the bus. Mary and Karina were on Kiara duty today. Mary did an admirable job of canula pulling, cleaning, and putting back. I obliged by not doing anything outrageous. Karina and Mary dealt with strawberries, laundry and dishes. I didn't do much of anything.

We met Kelly at the cancer center for radiation day three. Again, thanks to a lot of ice and chilled cucumbers (who knew that really works?) I was down enough for the mask to go on.

Radiation is relatively quick, less than two whole songs usually, but the effects are already setting in. There is a little bleeding at the trach site and my mouth does not feel very nice. I am tired, which I remember well from radiation last time. Of course last time I had thirty minutes a day, so I had hoped not to be so tired. But it wasn't coupled with chemo.

The red is just starting to flare on my face. I don't know if it is my rosecea or the beginning of the "horrible acne-like rash." I know it doesn't feel nice.

Three down, twenty-two to go...

Endurance:

If my family had a motto growing up, I believe it would have been endurance. Not that that was ever spoken out loud, it was just assumed, expected. Whining and complaining would get you no where. Dragging yourself to work sick, getting up when you were tired, ignoring an injury-- these were all seen as honorable actions.

My father, one of the most stoic people you could ever meet, on the few occasions he did show emotions, his own mother would admonish him, "Patrick, your eyes were always too close to your bladder." This was the standard.

I carry this ingrained notion of endurance with me to this day. Complaining is pointless. Pain is to be tolerated. Keep going no matter what.

I have been through some pretty hideous surgeries and treatments. I've always bragged that I have a high pain tolerance.

No, I have endurance.

When Zachary was working on me he kept asking me to let him know when something hurt. Of course I never said anything hurt. He asked several more times. I bragged my usual, "I have a high pain tolerance." He said, "No, I can tell when it hurts because your whole body tenses up. I need you to tell me when the pain starts so I can help you." What? Pay attention to pain? To what your body is telling you? This is a completely foreign concept to me.

Which is part of what got me in this predicament in the first place...

Perception:

I took me many, many years to realize that I noticed and remembered a lot of things that other people didn't. In school it used to frustrate me. A teacher would ask a question and I would wait for all the hands to go up because the answer was obvious. But then the hands wouldn't go up. And I would look around anxiously. Well maybe what I thought was the obvious answer wasn't the obvious answer. I don't have Hermione's confidence. I would second guess myself.

And guess what? I usually did know the answer, particularly if it was something obscure that others would have skipped over or easily forgotten.

I have no idea why I can remember details so clearly. I have no idea why my mind will keep track of random things for very long periods of time. But I do, and it does.

I have learned to appreciate this as I have gotten older, but it is still sometimes hard not to second guess myself. You would think after all this time, it would be easier.

Of course, it is very frustrating to know every detail of an event or story and not be able to share it. Almost like a punishment in a fairy tale. Sometimes it makes me completely crazy.

Those are my random thoughts for today. I apologize for three days away. I will make a better effort.

Kiara