So this is where we are now...

It is Monday night. It was a hot, muggy day in Eugene, followed by a still night, so no relief from the house of hot in sight. Nothing says miserably hot quite like running a warm air humidifier right by your head. Thanks to the high humidity, I've been kind of gunky all day. I pulled the canula myself this morning when the end was completely gooed shut. I had another pull later on. Then the whole thing came out while I was making my dinner as I suddenly found myself without oxygen. Never a dull moment.

It was an odd day today, but I guess I should back up to yesterday. I am continuing my strategy of alternating active tasks and resting tasks. Yesterday I had a big active task as we went to the Scandinavian Festival. It wasn't quite our usual trip. Although it would have been fine with me if Kelly ate, he is quite sensitive to my situation and did not. Karissa had a Viking corn dog and some lemonade, along with an ice cream later on. Thankfully she did not hand me the ice cream cone when it needed a dripping clean up.

We didn't stay long, or see much, but it was a lot of walking in the hot for me. I pretty much crashed to the couch at home. I did manage to pick tomatoes and cucumbers-- I can hardly keep up-- but I only managed two meals. Not good, I know.

Sunday was a particularly rough day for Kelly. He has been keeping all the plates spinning for a long time now without a break. The wait until scans in October is painfully long. We wait and we hope and we try not to over-analyze every twinge, but not knowing if this Hell was successful is more than trying.

I was waiting to talk to Karina after work. One of the draw backs to only written communication is that there are no nuances. No inflection. While yelling is pretty easy to convey, the difference between a question and a criticism becomes harder to discern. It is worse when you are someone like Karina whose default is always the worst. You say something moderate, but by the time it gets through her filter, you've called her a dozen terrible things. All this ups the communication challenges quite a bit.

While I wouldn't describe our conversation as a fight, I wouldn't say it was overly pleasant. Not a nice little mother/daughter chat. There were tears and hurt and anger and frustration. This communication issue is making me more than a bit batty.

I was still pretty steamed up at bed time. I already get serenaded by my pulse in my ear a good deal of the time. It isn't better when it is about 150. Kelly and I always did a lot of problem solving at bed time. He's gotten much better at reading the sign language and I've gotten better at remembering note pads. Still, it turned into a later night than I had hoped, followed by not enough sleep again.

Monday came slowly for me. Kelly took Karissa to riding before I dragged myself out of bed. The persistent late mornings aren't good, though, as that condenses everything into fewer hours, has me going too long without eating, and contributes to late nights which creates an infinite loop. Karina unloaded and loaded the dishwasher. The day seems to be starting out better.

Except I am still so tired. I picked tomatoes and cucumbers. Kelly went to work for a bit, but then came home to take Karissa to ballet. It is a crazy lot of driving for him, but I still can't turn my head to the right at all, so no driving for me. Karina was off looking at another wedding venue. The day both drags and flies by.

I am at the point in healing of self-assessment. Now I have to figure out what still works, what doesn't work but can be made to work, and what isn't ever going to work so get over it. I sent an email to my wonderful SLP for some guidance. I've had no luck learning to speak around the trach, so I asked about a speaking valve. They usually don't fit on the metal trachs and it would depend on how that whole breathing through my nose thing is going, too. I also have let my jaws lock up, so I need to know how to get them opening again in case I need to go to the dentist or anything radical like that. Also, in a strange turn of events, I have started having some spontaneous swallowing on the right side. Right now all it does is make my ears pop. I'm having a much harder time doing it on purpose, but it is the only thing even close to swallowing I've done since October. I won't be having a pastrami on rye, but maybe a drink of water. That would be nice.

Every doctor and member of my pit crew have his/her own set of exercises I should be doing. There is no way that I could do them all every day unless that is all I did. I am trying to figure out which ones give me the most benefit for the time invested. Which ones give me strength versus mobility versus pain relief. Each day is a little different.

While I am trying to sort this all out, life goes on. My little Karissa, who usually is a happy, sunshiny kid, has not been. It has been tantrumpalooza. We have had so much chaos in our lives. Treatments. People staying with us to help. People bringing food. People coming to visit. Appointments. She never was one who enjoyed down time. But there seems to be more to this than just the upheaval.

I remember 9 and half was tough for Karina, too. It wasn't a marked change for her as she was never exactly a cheerful sort of kid. And she had her share of chaos, too. She had gotten a new last name in third grade. Now I was changing schools and she would go to forth grade at a new school where she wouldn't know anyone. And we were waiting for a baby to be placed with us for adoption. And some days she still wasn't "used to" HIM (Kelly) yet.

It isn't like Karissa to be so worried about mundane things like which bag to pack. As angry and frustrated as she gets, usually she remains at least on the edge of rational. Not tonight. Despite food she could not be calmed. Some was utter exhaustion, but if she was exhausted before the hour and a half screaming fit, what was she afterwards? And her nails are chewed to bloody stumps. And even as short as her hair is, she still manages to get it in her mouth. Is this stress? Is it bratty 9 year old? Is it PMS? I really don't know. She never, ever behaves this way for anyone else. They only see the happy, smiling, ever helpful child. Only we get the "I hate my life" and the throwing of things and the refusal to shower/brush teeth/get in pajamas, etc. I am worried.

Again, it doesn't help that my communication is more difficult. With her, not only are there no nuances, there is limited vocabulary. I can write exactly what I want to say, but then she won't know a word and it takes me three more boards to explain it and by then the train of thought has long since left the station. Or, I chose a word that doesn't quite mean what I want, but I know she will understand it. She is getting better with the sign language, but when she is upset, forget it. The communication piece makes all the frustrations of parenting that much more difficult. I sincerely hope I can get at least some voice back even if only my family understands me. That will be enough.

In other news, my hair is growing back. It is currently four or five different colors. Serafina had the best description, Dr. Seuss hair. I also have hair growing "back" in places I don't remember it being. I'm pretty sure I would have notices black hair on my stomach. Also, it never, ever occurred to me, but my nose hair is growing back. Except new hair has that tendency to get ingrown. Yes. Inside my nose, both nostrils. Not a bit fun, not one bit.

Head mobility remains not great and I still have the round swollen face. I have no idea how long that is going to take to improve. I have acupuncture and physical therapy this week, along with both oncologists, so we will see what they have to say about it. I also have ripples in all my fingernails where chemo stopped. Some of my toe nails have also cracked on the chemo line. Lovely. Let us just say that chemo and its aftermath are not for the faint of heart.

I am trying my best to boldly go forward with confidence of success. I try to ignore that little voice that wants to ask, "What if it didn't work?" because I don't want to go there. The next two months will come whether it worked or not, so I should live them. Little voice be damned.

Thank you to Joan B. for bringing us food. It was much appreciated, especially by Karissa. Thank you to our wonderful neighbor who has been coming over and mowing our lawn and weed whacking. Thank you to all the people who didn't give up on me just because I can't speak. Thank you to Jen for taking Karissa tomorrow. Maybe she'll talk to you?  Thank you to all the people who have done things for us, both large and small, to keep us going so we could even get to this point with a shred of sanity left.

And, of course, a huge thank you to my husband, without whom I would not be able to see a way forward. I love you.

Until tomorrow...

Love,
Kiara

PS-- my SIL is in ICU again. A little extra prayer or thought for Marlene would be appreciated.