Boogie Men

I assume that everyone has their own personal Boogie Men. The specters of things you did and wished you hadn't. The things you didn't do and wished you did. The choices that come back when we are very quiet to revisit upon us the consequences of those decisions. Since I have never been anyone but me, I have to make this assumption, but based on my conversations, I think it is a safe bet.

My Boogie Men came home to roost yesterday. I'm not sure what made them feel so welcome. Perhaps it was the extended quiet time. Maybe it was the plethora of pictures on Facebook of celebrating. Maybe it was the weakness of this stage of the treatment. Whatever it was, they came, brought camping equipment, and settled in.

Instead of making s'mores, they reminded me of all the things I will not do again. I will not eat corn on the cob. Or lick a child's ice cream cone to keep it from dripping. I won't have special holiday food, except in its blended up form. Perhaps for some foods that is fine, but for others, it is the act of eating and tasting them that make them worthwhile.

And then they began to pile on...

Water sports-- swimming, canoeing, kayaking... these are not approved activities for someone with a trach tube. Perhaps it will come out at some point, if all of this treatment proves successful. But removing it is not something that will be rushed as putting it back in is extremely difficult. Also, this is not a little round, nice neat trach stoma to close up. This is still a pretty substantial open wound in my neck, which has ceased healing and is degrading somewhat at I reach medium rare.

What about all the stupid things I ever said... did.. that I cannot take back.

What about not being able to shout when you are frustrated or angry?

What about the unresolved issues that are likely to remain unresolved for the rest of my life, be that however long it may be.

What if this didn't work?

You can see that my Boogie Men brought all their luggage. As they unpacked it and waved it in my face, I became more and more upset. What If I had just... Why didn't I... How can I...

This all led to a minor breakdown at dinner. A lovely dinner that Kelly made of traditional Fourth of July foods. That all look the same as every other day when you put them in the blender. Yes, the feeling sorry for myself was in full swing. And I know it is fair to say that I have good reason, but that still doesn't solve the problem.

I have spent a lot of time trying to reconcile the fact that so many people have dropped everything to help us out; how people have unabashedly said they love and care about me; how I am special; with the reality that the people whom I expected to do these things did not.

This is not to say I don't feel blessed, because that would be absurd. I have been more loved and cared for by more people than I could have ever dreamed. I have been told that I touched people's lives, and there is little more than one can ask for than that in life. Is it greedy of me to have expected more?

But this all leads me back to the Boogie Men who remind me that this was my doing through my own actions or failure to act. They do not quit.

When we were at radiation this week, my previous radiation oncologist was there. The one who swore up and down for seven months that there was no way this was cancer in my mouth. I don't know what to say to her when I see her. It isn't just that I trusted her. The dentist trusted her. The ENT trusted her. If she says it isn't cancer, it isn't cancer. I have no way of knowing if seven months would have made a difference. It would have destroyed Karina's senior year of high school, but if I hadn't needed such extensive treatment-- it the outcomes had been better, it would have been worth it.

So you can see I've been stewing in my own juices more than a bit. Not a good plan.

On the upside, thank you to Seal for the program and obituary. It seems like a thousand years ago and yesterday that I started out teaching in Sun Valley. So many dear people. So many memories. What would I tell that young woman if I could???

Thank you to Eileen for continuing to keep everyone on track and informed. And for dinners, and gossip, and cherries.

Thank you to Anne for always checking in, for Call the Midwife, for scooping, and for being a friend.

Thank you to Peggy for her cards, and prayers and gifts. And her listening "ear."

Get well wishes to Paul Manske as he recovers from open heart surgery so he can gear up for back surgery. Grandma Kay played a very important role in Karina's life, and while she never quite warmed to Paul in the same way, he was there when we needed him.  Heal quickly and well Paul!

Thank you to all of you who continue to read this even when it is pathetic and self serving on my part. Hopefully it doesn't make me seem too crazy...

One week from tomorrow we get to go pick up Karissa from her three week adventure. And all quiet will cease, but I will be so happy to have her home!

Congratulations to Karina on getting a job. She will be working at the fine jewelry counter at Sears once she goes and pees in a cup. Ah, the "perks" of being an adult.

Malia arrives tomorrow to spend a week helping out. Hopefully she is able to distract me from my dread of the upcoming week of chemo and radiation. Sigh.

Until tomorrow, or Monday... Tuesday at the very latest...

Love,
Kiara