A Good Start to the new Week

I always find it interesting what posts seems to really touch a nerve. I can only assume that lots of people have Boogie Men based on the reaction to my last post. I'm not sure if that makes me feel better or worse. I'd hate to be the only one grappling with them, but then that would mean no one I care about would have to deal with them. If one of you figures out Boogie Men repellent that doesn't involved controlled substances or electro-shock therapy, pass it along.

My dark cloud seemed to pass with the Holiday, so I think a lot of it was letting go of things. It is easy to blame cancer and rage and rant, but truly we all let stuff go all the time. I lost my love of grape Hubba Bubba long before I lost my ability to chew it. Partying all night doesn't hold the same allure. Sitting on the floor for long periods of time isn't as easy as it used to be. Changing is part of life. I just had to make some really big changes in a big hurry. I'm adaptable, with a few bumps here and there.

Malia arrived yesterday. An audience helps. I was well trained to put on a "face" for the public. While I can be open and honest on this blog, talking about constipation even, I still cannot repress that need to put on the brave face. But really, fake it till you make it works. I pretend to be better and then I am. We spent the first little bit finding our common ground and went from there. She is a very patient person, which helps with my modes of communication. Also, silence doesn't make her feel the need to fill it (like I ALWAYS did), which is also very nice.

I've mentioned before that I collect smart people. Smart people communicate with each other in a special nerd language. It is our native tongue that we try to hide when we go among the masses. And I have smart friends who, for some inexplicable reason, never realized they were the smart ones. Yet they learn the mother tongue so quickly. There is no glow like the glow from a person who realizes that you recognize their brilliance and respect and value them because of it.

That is actually true of so many people. Bernadette, an amazing teacher I was lucky enough to work with early on, told me that it is important to look at kids strengths, even if they aren't strengths right now. Things that make school tougher for them may well make adult life easier for them. When you look at each person for their strength, you find you are looking at a whole new person. As long as you are looking for those strengths to praise them, not exploit them. Match their skill set to a task maybe... (Only the person who wants to get the stone, but not use the stone can get it out of the mirror.  Nerd reference.)

For those of you not on Facebook, Sunday Karina made a big announcement. She and her boyfriend got engaged. This did not come as a complete surprise as they have dated a long time and we have all talked about it. There have been questions about blessings before this. We had honestly hoped she would wait to marry until after graduating, but she is an adult and it is her life. Parenting adult children is a new world. We are still finding our way.

Unfortunately, I am not prepared to throw myself into wedding plans at the moment. Maybe sarcastic, funny, wedding plans you would never actually do but are entertaining to think about... Maybe those.  But the plan will come together over time. Kelly and I put our whole wedding together in three weeks. The first time around I started more than a year out and someone else still already had booked the reception site I wanted (yes, Sandi F. -- I'm looking at you.  We share and unanniversary, believe it or not!)

Engagement news, wonderful visitor and a full night's sleep will do wonders for a person. It was a good thing too as we had to be at the cancer center bright and early today. 8:30 in fact.  All vitals good. Heart rate was even under 100 for a change. The rash that most people get horribly I only have mildly.  Whoo hoo-- for once being a 1%er works in my favor. I only have needed Tylenol and muscle relaxers for pain. My mouth looks much better to him. He thinks I am doing great. So great I get another dose of chemo next Monday. Lucky me. But he is encouraged which is a hell of a long way from where he was before radiation.

Speaking of the rash, it is so prevalent that the drug maker sends a care package of soaps, creams and lotions to help with it "free" to people taking it. At nearly $10,000 a dose I hardly call that "free," but okay. They submitted the order the day of my first dose. Today was my fifth dose. The care package came Saturday. Good thing I didn't desperately need it.

Malia brought me home and Kelly went to work. Yes, you read that right. Actual in slacks and shirt, in the office, work. I did my part by not clogging my trach or spraying blood about and generally behaving myself. We had a peaceful afternoon. Karina and I picked and Malia took care of the kitchen. Some visiting. Some mindless computer distraction. Peaceful.

Malia and I met Kelly back at the cancer center at 4:30 for radiation. The swelling is good today. I'm sure the big bags of steroids and Benadryl did hurt. Usually it is quick. Malia won't need her craft bag. Wrong.

Getting the trach out is a slow and painful process as now that it is bleeding and gooping more, it gets stuck to my skin. As you can imagine, it isn't exactly like yanking a band-aid off quickly. Kelly uses water and q-tips to loosen it the best he can, but of all of this, it is far and away the most painful part. We are late to radiation as it takes awhile to get the trach loose today. I had to take two tries at shoving the mask on to get my chin up enough and line up the hole the cut for my port with the actual port. Not my regular radiation team, so no music playing to distract me. But number 19 is in the books. I just repeat in my head, "Direct, Protect, Heal." This is shorthand for direct the beams to the cancer, protect the healthy tissue, and heal the damage. It gets me through.

Mondays I also see Dr. F. But it is already after five. We did not have the world's nicest, but also most thorough, nurse today, thank goodness. Dr. F. takes his time with everyone. Because we like that about him, we wait. And wait. And wait.

He is very happy with the way I look. He actually thinks I look better now than I did two weeks ago, which is very encouraging news. My trach site does not look nearly as bad as he expected it to at this point, which is also very good. He did admit that he sometimes worries that he sees patients as looking better because he wants them to be better. However, he really felt my movements were much less mechanical. A week with PT, massage and acupuncture helps on that front. And a steady diet of muscle relaxers.  Whatever the case, feeling positive is a good thing.

Both doctors agree on monthly rechecks for three months after radiation. I'll need a monthly port flush anyway. We'll add Dr. A into that mix at some point as well. We will wait at least three months for a PET scan to let the cooking subside. Unfortunately, that likely means the trach will stay that whole time, but once it starts healing again and the goopy mucus slackens, it will be more tolerable.

In all, a very promising report. I need that to push me through Friday.

I also found out that Reggie is coming to visit me. This gives me another positive boost to get me through. Wonderful Reggie. Some people are just your forever friends. She is one of those.

Kelly's mom is looking at a late summer visit, too. She will help calm the storm that is Karissa and can help with the back to school prep. We go back after Labor Day, thank goodness.

I received a wonderful email from a friend about the last post. She said several things that really touched me, but two of them are so valuable, I must share. The first was that there really is a lot of good in the world and we forget that because we are inundated with the bad stuff through news, the internet, etc. Good deeds don't sell papers, so to speak. This makes us all the more surprised when kindness occurs. The second I will attempt to quote without cutting and pasting. "No one is going to tell you they can't come trim your shrubs because they were making 12 quilts for orphans." True. So true. I hope I value the gifts everyone gives, even if that is a text check in or praying for me. I have found that the people trimming the shrubs are often the quilt makers too, but her point is well taken. No one needs to defend why they do what they do, or do not do.

Many, many people have told me that this blog has impacted them in a positive way. That amazes me and makes me happy. I write it to get out of my head. I write to share information. I write because it comes naturally. And it helps with my inability to speak. There are those who could surely argue I talked so much the first 45 years that I have nothing left for the next.

The teacher in me is touched that people learn from this blog. It gives me fulfillment without report cards, lesson plans, angry parents, or dress clothes. Or a paycheck, but hey, you can't have everything.

Until tomorrow...

Love,
Kiara