Let’s Talk … and Listen

When I posted just a few brief words the other day, hoping that more posts would follow that action, Jacqi kindly commented that blogs are just a conversation and that my blog can be whatever I want it to be. Thanks, Jacqi.

If blogging is a conversation, it remains one-sided unless you read it and engage with it in some way. If you engage with my words, I think it does become a conversation, even if you don’t comment. If you leave a comment, there is some proof of our conversation. Feel free. :)

I had a conversation with myself in the shower this morning and thought I would share it with you. It was prompted by this photograph.

hockensmith familyMy sister posted it on Facebook yesterday as it was apparently National Siblings Day – a day none of us knew existed prior to the invention of Facebook. Her sharing the photo prompted some conversation among the siblings in the picture as well as a few of our friends and relatives. I’m the oldest kid and all of our names begin with K. Let’s just call us K1 (me), K2, K3, and K4. The picture was shared by K2, who is missing a few teeth. This prompted K3 (on the right)  to crop just the gap-toothed one, repost it as a comment, and LOL. K4 (the baby) laughed at our hair – three of us with basically the same “do” – a 60s flip. Several of K2’s friends commented on how much K2 looks like our mother. I added helpfully that if you hold your cursor over mother’s mouth, you can see the likeness even more clearly. Go ahead – try it! :)

This picture was taken when I was in high school in Corsicana, Texas, probably for a church directory. My other comments on the Facebook post were that our mom is so pretty and my sisters adorable. Also that I look a lot like our dad in this photo. This is funny, because he is my step-dad. I recalled that around that time, someone had commented to dad and me about how much I looked like him. We just smiled at each other and let it be our little secret.

In the shower this morning, I was thinking about these comments, about our beautiful, loving mom and my heroic dad. Mom’s brain has been taken over by Alzheimer’s dementia. The disease has taken most of her memories and has turned a loving, compassionate, fun and creative woman into someone who can be mean and fearful. Everyone knows it is the disease talking, but that doesn’t make it easier to experience. I’m sheltered from this because I live so far away and have been unable to travel during my long illness. Dad has been a hero to me since he loved me as his own flesh and blood the minute he married my mom – when I was 7 years old. And now he bears the burden of caring for mom during a long and difficult disease. His love for her compels him to protect her and keep her in familiar surroundings for as long as possible.

As I engaged myself further in conversation (and ran up the water bill), I thought about my frustration with residual changes in brain function that remain post cancer and how difficult it is to explain when it isn’t obvious to anyone but me. And how frustrating that is for me. And how I think mom tried to tell me something was wrong with her brain long before it was evident to anyone else. And how I did what people do to me. I said, “Oh, I do that too.”

I had a check up with my oncologist yesterday and I asked him if there was anyone out there (meaning in town) working with chemo brain. He called it the “proverbial chemo brain,” which started to piss me off even though I dearly love and respect him. He indicated (with his arm outstretched), that I was way “out there” – which I took to mean that I am a distinct minority of his patients who have brain complaints, especially a year after completing treatment. He surmised that we don’t know if it is the chemo that causes the problem or if it is the cancer itself, or if it is just the beating our body/brain takes as the result of a trauma, be it cancer, surgery, or something like he experienced last year – an aortic rupture. I guess that’s why he called chemo brain “proverbial.” I didn’t stay mad at him because he said he would do some checking and on the way out told his nurse that she should remind him about my chemo brain. There – he said it!

This all makes me sad that I didn’t listen when Mom made remarks about her memory years ago. I knew she was reading lots of books and articles about Alzheimer’s and what to do to try to prevent it. I knew that. And when we talked on the phone, she would say things like, “Boy, it seems like my memory isn’t what it used to be!” And if I asked what she meant and she gave an example, I would say, “Oh, I do that too! Last Sunday I couldn’t for the life of me remember the name of the woman I sit behind in church every week.”

And if that conversation only happened once, or maybe twice, that response may have been ok. But it happened more than twice.

Now that the shoe is on the other foot, I believe that Mom was trying to tell me that her brain had changed and she was worried. I wish I had listened to the intent behind her words. I wish I had accepted her words as truth and validated her concerns. I understand now that my misguided attempt to reassure her instead belittled her reality. I wish I could take that back.

My 1st Rebirth Day … Living in the Land of Or

I’ve been neglectful again! Not old family history, but an update on me, copied from my caringbridge.org journal. I’ll try to “focus” on this blog soon.

My life-giving stem cells

My life-giving stem cells

Yes! It has come and gone. The anniversary of my stem cell transplant was Thursday, Feb. 12. I’m a whopping one year old. One of my well-wishers on Facebook called it my rebirth day. I like that designation, so I’m keeping it.

I wanted to celebrate and to reflect on the significance of the day and I devoted most of the week to doing so. :) I left some things unfinished or undone, so I guess it will continue in starts and stops. Here’s a run-down of my rebirth day activities:

·     I read through my caringbridge journal – up to and including the day of the transplant. I have yet to finish. You can create a pdf file and print it – but it was 100+ pages – so I didn’t. (Spacing issues made it longer than need be, but still…)

·     I started reading through the notebook where I recorded everything people did for me during my illness and treatment, then I went back and started lifting up a prayer of gratitude for each of you as your names appeared. I haven’t finished that either, I am sad to say. (We’ll be discussing my issues with completing what I start a bit later.)

Goody Bag 1·     I made birthday goody bags to take to the infusion/chemo room where I have been a patient. A nurse suggested 40 would be good to cover the number of patients they might expect in a day. Thankfully, Melissa took me shopping and helped me make decisions or I might still be standing in the middle of Target trying to make up my mind!

Goody Bag 2·     Wednesday morning, Gayle went with me to TX Oncology South to deliver the goody bags. It didn’t take us as long as we anticipated, partly because there were quite a few men that morning and men tend to sleep or at least recline with closed eyes during chemo while most of the women do not. Those with closed eyes were not bothered – I just left a bag for them on the chair side table. We left the rest of the bags at the nurses’desk where everyone checks in.

·     After the goody bags were delivered, we met more friends at Taco Cabana for lunch and as a meeting place before walking across the Pfluger Pedestrian Bridge. I hadn’t walked across before and it just seemed a fitting way to celebrate my health. It was a beautiful day! Warm and sunny, made more so by beautiful friends.

Bridge 1

·     Thursday is the day I teach English as a Second (or other) Language at church. I had told the students in an email that I would be giving out hugs on my birthday, so I gave and received many! As I told my students, all during my illness, one of my goals was to get back to them because teaching them is a great joy to me.

rebirth dinner·     That evening we enjoyed a celebratory dinner with Angela and her husband, Frank.

·     Friday I had time to write a couple of notes of thanks to Dr. T and his staff and the infusion room nurses and to deliver them, along with some treats.

·     Saturday I enjoyed lunch with a few more friends.

As you can see, I succeeded in making the celebration last the entire week! I didn’t get to see everyone and give out all the hugs I have to give, so the invitation still stands. I’d love to lunch or coffee or walk or talk any time!

Sunday gave me another moment for teary eyes (teary eyes happened as I read my journal, but especially when reading my notebook of kindnesses. As I read through the notebook, the idea came to me that your names are recorded in my Book of Life). The sermon on that particular Sunday just happened to be about healing and I had spent the previous two weeks thinking about my healing and the confluence of multiple factors that, I believe, came together for a positive outcome. The points in John’s sermon echoed the thoughts that had been floating around in my head all week. I was so glad I was there to hear it!  I asked John for a copy of his sermon and if I ever put my thoughts down, I may share with you.

I guess you might want to know how I am one year post transplant. I feel really well! I still get fatigued rather easily, but I can go much longer now before hitting a wall. The neuropathy is pretty much gone. Sometimes I notice that a big toe is numb, and I have noticed that when it is cold my hands ache and sometimes get a little weak, but that’s about it. My muscle tone isn’t great, so that’s my goal for the year – getting stronger. I have the weirdest leg and foot cramps, especially at night. You know how when you get a cramp like that, the thing to do is stand on it? Well, I can’t stand with a flat foot for a minute or two because it literally cramps my ankle muscles into a curve. I had a CT scan and all was clear. For some reason, Dr. T didn’t include my neck, so I’m going to have an ultrasound next week (need it to check my thyroid anyway). I’ve been getting my vaccinations – 5 or 6 at once! The fracture in my upper arm healed very well and I have good range of motion again. My brain is much improved, but still not back to the old me.

And that is the why of the second title – Living in the Land of Or. I want very much to live in the Land of And, but I’m stuck here in Or. It’s not that I’m trying to multitask in the sense of doing several things at the same time. What I’m simply wanting to do is to be able to hold several things in my mind so that I can get back to them when I want or need to.

I can either keep up with my writing OR reading OR cooking OR getting exercise OR keeping in touch with people OR  OR  OR… So what happens is that I focus on just one thing at a time. Now – I’ve always done that to some extent. If I get really into something, I’ll let other things slide. Or I’ll procrastinate. But this is different. I kind of think of it like putting a call on hold. The thought or project or task is still there blinking and you can get to it when you finish on the other line. My problem is that I completely lose the connection. I have to redial or wait for a call back. I just can’t seem to keep the thoughts and ideas that pertain to more than a couple of things in my head at one time.

I’m accustomed to having lots and lots of ideas and thoughts rumbling around in there at once and picking and choosing from among them at any given time and throwing in more at will. I have to concentrate on one project at a time because the “hold” option is not always available.

And decision-making … I’ve always fit the Libra profile of having a hard time making a decision because all alternatives must be thoroughly weighed. But again – it’s different now. When I was trying to decide how to celebrate, I had some ideas, but they would just swirl around in my head. They just kept swirling around in there and I could never prioritize or decide what to throw out and what to keep. I had to call friends to help me make decisions about everything I did to celebrate – is this a good idea? Is this a little weird? Is this too much? And each decision came one. at. a. time.

Thank goodness, I don’t have to prepare the lessons I teach for ESL or I’d be up a creek without a paddle. Or a boat!

Well – enough of what must sound like a lot of complaining. I just always hope that whatever I share here with you may shed some light on this thing (or these many things) called cancer and cancer treatment. It helps me to talk about it and I hope it is helpful in some way to some one. I am truly, truly grateful that I am sitting here writing this to you today – weirdo brain and all!

You know, once a cancer diagnosis arrives, it never leaves. The transplant greatly increased the odds that this cancer won’t return and each year I check off brings me closer to that 5-year mark (or was it 7?) where the chance of this bad boy returning becomes negligible. You may remember that I was trying to come up with a name for life after treatment – especially because of this cancer’s proclivities. I’ve been thinking of one I recently heard from Kris Carr (she has been living for several years with a cancer that really has no treatment and writes books and cookbooks about the healthy transformations in her life). The term is Cancer Thriver. I like this because it encompasses living with cancer at any stage. The goal is to thrive no matter where you are on the spectrum and no matter the outcome, you can still be a thriver.

heartsMay we all thrive in the coming year! Cheers and applause and hugs and kisses to you, my dear ones, who carried me and kept me from “falling off the wacky end” – as my friend and fellow cancer thriver, Jan, expressed it so well!

If I keep focusing on this writing thing, I may be back here again soon. :)

Thanks for sticking with me here. I really do have intentions to write more about Fred M. Webber, the Bryan Family Bible, the Elgys, and more! But, as I said above, it’s kind of an “all in” or “all out” situation for me at the moment since the hold option is not always available. 

 

Christmas Decorating: Mom’s Influence – The Advent Calendar

Sometime before I had kids – I’m thinking late 1970s, I was visiting my parents and mom was making an Advent calendar that she copied from a friend. She bought enough of everything ahead of time so I could make one too. We worked on our calendars at her kitchen table – soon covered with felt, scissors, glue, sequins, thread, paper, pencils, sharpies, burlap and with her sewing machine nearby.
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I still have the instructions that I wrote from her copy.

Advent Calendar instructions 1Advent Calendar instructions 2Advent Calendar instructions 3Advent Calendar instructions 4

And the pattens for the ornaments and tree.
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I didn’t finish all of the ornaments during my visit, so it was up to me to finish on my own. I didn’t understand a few of the ornaments – like the owl, for instance. A Christmas owl? What’s that about? I understand the imagery of the fish – but this one is maybe a little too “fishy” for the Christian connotation…
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And how about the pig?
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In the creative comfort of my own home, I didn’t always use the designs provided. I got the designs for the doll and the teddy bear from coloring books.
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DSCN3311 - Version 2I don’t know if you noticed, but I never finished the Advent calendar. See that pocket with the number 1 on it? It’s empty. Over 30 years later and I still have one ornament left to make. Typical.

Here is a look at our almost fully decorated Advent calendar.
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The missing ornament is supposed to be a reindeer, but I didn’t like the one in the pattern. As I was preparing this post, I found several ideas I had considered for the last ornament. Living in Texas, these included an armadillo and a pair of cowboy boots. Hey – unless you can explain the owl, I think the armadillo and boots are just as relevant. Besides, my husband used to collect armadillos, so it would have had meaning for us at the time.
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That armadillo is traced from one of my husband’s signature armadillo doodles. He drew the cowboy Santa too. :)

Leave a comment and suggest what I should make as the final ornament.

Or should I just leave it as it is – a testimony to imperfection?

When we only had one child, she got to put each ornament on the tree to count down the days to Christmas, but with the birth of two siblings, it was necessary to evenly divide the task – which did not divide evenly among three children since there were only 23 ornaments. These days I hang the calendar on the pantry door in the kitchen and I alone have the privilege of counting down the days on our Advent calendar.

Thanks, Mom!

Mom also made the tree skirt that we use under our tree every year. You can read about it (and get the directions) here: Christmas Decorating – Mom’s Influence: The Tree Skirt.