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. 

 

One thought on “My 1st Rebirth Day … Living in the Land of Or

  1. Kathy, how wonderful to read this update. Congratulations on making it–thriving!–to this mile marker. Looking forward to reading more…as you are able, of course :)

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