Yesterday was a vast improvement over the last Wednesday after chemo. Thanks to Zachary for a wonderful house call. Perhaps a little alteration in meds helped too. The acid reflux is killer though, and more frustrating because if I could just drink the Maalox it would stop hurting, but I can't.
They tried a stepped down dose of the steroids this time. The draw back to this is that there is a lot more bleeding. Feeding tube site bleeding. Trach wound bleeding. Mouth bleeding. And blood is my very favorite thing, after all. We won't be repeating this experiment.
I did get up and walk around and nap and do some of the things I was supposed to do. With a hectic schedule like mine...
Still, feeling a bit down and overwhelmed at times. Tired of being covering is goop of some kind. Tired of acid reflux/heart burn. Tired of drooling, oozing, dripping, shedding. I know, to be expected.
Mostly, while I feel so incredibly blessed by all the wonderful help we are getting, I miss being a part of the world sometimes. No one is excluding me, mind you. In fact, most people go the extra mile to keep me in the loop and make me feel included. It is my own physical limitations holding me back. Never been my strong suit...
Last night was Mack's last concert at UNR, commemorating 40 years at that institution. Mack has been a part of my life since I was 18 years old. Sometimes our relationship was not smooth, but it was somewhat bittersweet to not be there. Someone posted a recording of the encore. A beautiful piece I have played many times. I found myself not sad for Mack, but for myself. To realize that I will not sit in the middle of a band or orchestra again and play. I have grieved for this before, but there was still some there to process. Better out than in.
Today was better in some ways, worse in others. I got outside even, which was very nice. Glad to be able to walk around a bit outside in the fresh air. I need to do more of that. I am slowly getting through my head that eating is better than not eating for the reflux. Kelly made me some lunch and the smell kind of turned my stomach.... hey, the smell turned my stomach, which meant I could smell it enough to know that! There really is a silver lining to every cloud.
I had a long nap. Angie is having Karissa for a sleep over tomorrow night, which averted the school movie night drama and makes getting her to syllabus easier on Saturday morning. One less bit of insanity. Yay.
There was quite a bit of bad news today and that didn't really help. The latest update I heard on Sara was that she was taken from the rehab facility to the ER. I haven't heard anything else, but please hold her in your thoughts and prayers, as well as her daughter.
Some friends from Temple lost their barn, their business, and 400 chickens in a fire. If I was well, I would be over there shovel in hand to help out. But I can't, which frustrates the crud out of me. And so very sad for them to be in the situation in the first place.
My sister in law has been ill in the hospital and the news has been getting worse. I hope that she turns the corner soon. I think we have all had enough sick and hospitals for awhile.
Today is May Day. Flowers and dancing. Well, the strawberries are in full flower and setting fruit. I broke off another flowering stem on the rhubarb so if anyone wants rhubarb to use this year, it will be useable. The Sage is just gearing up to throw open its lovely purple blossoms. The rhodies are in bloom, especially the purple one, and our surviving azalea in amidst the raspberries is showing its pretty red flowers. Hoping to get some gerbera daisys when I feel up to it. Mine have overwintered several years, but little chance of that this year.
Tomorrow is PT. I am looking forward to Karen making things better as she always does. Hoping for less bleeding. Less reflux. Less bad news. More good smells, and flowers and walks.
Until tomorrow.
Kiara
PS - A big shout out to my friend, Nancy C's daughter Anna for cutting her hair and donating it in my honor. What a sweet thing for her to do.
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3 comments:
Kiara, Please text me if you need a walking buddy. I'm always up for a walk (especially as the weather is so lovely) and would be delighted to walk with you anywhere! --Anne B.
OMG!!! Did I read that right? You actually smelled something? Even if it was some food you didn't like the smell of. You smelled it!!!
What a great step forward.
Such good news. Keep up the good work.
Miss you and love you all.
Love & hugs
xoxoxoxoxo
You know I look for your blog everyday, I don't want you to feel like you have to do this, but it is how I am checking up on you. Kind of like a Peeping Tom. A little creepy and you don't get anything out of it, but it makes me feel better.
News from the Smith family. Nicholas is driving, he goes where he wants, when he wants. At times, I can tell he looks at me and wonders why I never told him how cool that would be. He is still single, but looking for a nice girl. Apparently they are in short supply. Tomorrow he will take the SAT. Depending on how he scores will determine the school he can get it to. If he knocks it out of the park, he can go anywhere he wants. If he tanks it, he can take it again and go for the "Super Score" but it will limit some of his choices. His current GPA is 3.56 and this year looks like it will be one of the better report cards. Next year he has signed up for three AP classes and he seems pretty excited about them. Hopefully he doesn't come down with senioritis and tank the year. Humboldt is up your way, have your heard anything about it?
Jenny checked out at some point during the year and Bob and I are riding her pretty hard to get her back on track. So good to be appreciated for being the mean parent.
I am scheduled for surgery on the 12th, to fix my knee. Such a little thing and it took me down. I am looking forward to being normal (or as close as I get) again.
Bob is well, working from home as often as possible and Jenny just got him hooked on a new app called 2048. You should check it out. Mindless strategy to survive and achieve high scores. Great to do while sitting for long periods of time.
Reading your blog today, touched on something in my heart. It wasn't that it was Mack's last concert, but that you were not playing in it, nor would you ever play clarinet in it again. That is worth mourning. At the high school football games, when I watch the kids play, I want to jump in and join them. So many memories of playing and having fun with everyone, having the director yell at us for talking, reading, chewing gum, etc. when we should have been paying attention. It is hard to let that go. It is kind of like the physical reaction to your memory when you smell something from your youth. The dry taste of a reed in your mouth. It is the same feeling you have at graduation knowing that you have done your time, some of which you grumbled about doing and wishing you could start it all over again and do it just one more time. I just wanted you to know, I understood.
Love ya!
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