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. 

 

My Recipe for Portacath Pillows

2/03/2016 – Update:

So this is crazy! I have been getting so many views of this post coming over from Pinterest! Thank you for coming by and for all the good you are doing for your friends, family, strangers – or maybe even for yourself. Hugs all around!

With so much traffic to this blog post, I’ve decided to update a couple of things – some thanks to the suggestions of readers. So – anything you see in this color is an addition or change to the original post.

And just so you know – I had a CT scan recently and there was no visible sign of cancer. I’ll be celebrating my 2nd birthday (stem cell transplant anniversary) on 2/12. 

Enough hair for a little trim!

Enough hair for a little trim!

I’ve been neglecting this space again! Jana Last even included my last post – Mom’s recipe for Blender Custard Pie – in her Fab Finds. A  week ago! I didn’t realize it until today.

I usually post family recipes on Friday, but today will be a different kind of recipe. Not really a recipe – I’m fudging cheating. It’s a pattern.

If you are a frequent visitor, you know that I had a stem cell transplant on February 12th – my new birthday. That makes me 7 months old today!

On August 12, my six month new birthday, I celebrated by taking snacks and portacath pillows to the infusion (chemo) room where I received six rounds of chemo from Sept.- Dec.

On my first day of chemo I was scared and apprehensive. A friend texted me after a couple of hours and asked how it was going.

My answer to her: It is strangely pleasant here.

Cancer free! 12/14

Cancer free! 12/13

And it was. My nurse, Emily, took such good care of me, patiently explaining everything and making sure that I was comfortable. The woman across from me had a friend with her and they were playing cards and laughing. They wanted a picture taken with Emily, so I suggested my husband take it. :) There was a volunteer in the room who came around every so often and offered to get water, coffee, or a snack for my husband and me. It was so nice to be looked out for in that way.

Hours spent in the chemo room were mostly pleasant and I always had wonderful nurses and the best of care. But there was never a volunteer with snacks on any of the other days. :(

Now that I am able to be on the giving side of cancer, I decided that, once I felt up to it, I would spend some time in the infusion room and try to return just a bit of the goodness that I had received there. I’m not up for doing this on a regular basis, but I decided that I could do something once a month to celebrate on the anniversaries of my transplant.

Now let me tell you about those pillows, as they are the main point of this post….

In the infusion room, there was a basket that held hats that had been sewn or knitted or crocheted by volunteers and were free for the taking. Friends who had been cancer patients told me to look for the basket and to find a hat to wear to bed because my head would get cold at night. (They were right!) I found a hat I sort of liked …. (I’m not much for turban-style pink hats that scream CANCER), but it was just the right weight – not too heavy and thick – a nice, soft fabric for a sleeping cap.

my pillow

my pillow

The other thing I found in the basket – and there was only one – was a portacath pillow. There was a note with it saying that it had been made by a woman in her 80s who is a cancer survivor and her daughter is a cancer survivor. It even had her address so I could send her a note of thanks. :)

Many cancer patients have a power port or a portacath “installed” under the skin a couple of inches below the collar bone. You know – right where a seat belt will fit perfectly over it, pressing firmly to make it just a bit uncomfortable. This great little pillow attaches to your seatbelt and holds it off of your port. I prefer to have the pillow higher than my port as I find that if it is right over the port it still puts pressure on it.

lots of pillowsI used the pillow I took from the basket as my pattern and made 31 for the infusion room last month. There were none in the basket today. Time to make more! I’m sharing my directions with you, in case you would like to join me.

A friend helped me pick out the gold fabric off the discount table at the fabric store, noting that is is gender neutral. What smart friends I have! I made some from denim I had on hand, but they take longer to make because of the little bit of hand sewing. It’s dense and hard to poke a needle through, so I don’t recommend denim or old jeans unless you are only making one or two or have special denim super powers. Just plain old odds and ends of poly/cotton or cotton or muslin will work fine. (At first I hesitated to suggest fleece because I was afraid it might cause a little shock from static electricity during cold weather. I tried one out a couple of times and didn’t have a problem, so I think it’s ok after all. Fleece sews up easily too.) Feel free to alter as you like. The pillow I have is just a little bigger than the ones I made.

What you need:
Enough fabric for two 7-x-4-inch rectangles.
Velcro – the sew-on kind, not with sticky backing. I used 5/8-inch width.
Fiber fill stuffing
thread

A word about velcro. One time I picked up several packages of velcro in a variety of colors and thought it was so great to have more color options. But – the velcro backing was very stiff and I didn’t really like it. I even cut rounded corners because I didn’t want it poking people. I don’t have a package to tell you a brand, but I bought it at Hobby Lobby. Last time I bought velcro I saw that some are labeled by how stiff or flexible they are.

Cut two 7-x-4-inch pieces of fabric.

Cut two 7 x 4-inch pieces of fabric.

Cut Velcro to 4-inch strip. (It has been suggested that a 3.5 inch strip is so much easier to sew. Duh!! And it should not cause a problem with snagging clothes because the little bit of velcro that will be exposed will be facing AWAY from clothes – not toward them.) Machine baste one side of Velcro to right side of fabric – fuzzy/loopy side up. Stitch only one end of Velcro, leaving the other end free.
baste 1

 

Baste other half of Velcro strip to opposite side of fabric – loopy side down.
baste 2Put fabric pieces right sides together and make 1/4-inch seam all the way around, leaving an opening about 1 1/2 – 2 inches at one end. Be sure not to catch the “free” ends of the Velcro pieces in the seam. (See above. If you cut your pieces to 3.5, you won’t have to worry about catching the free end.)
right sides openingTurn right side out and stuff.
turn and stuffWhip stitch opening to finish. Ta Da!
finished

These are great to do assembly-line style, if you want to make more than one or two.

I look forward to celebrating many more 12ths of the month and practicing this small act of gratitude.

And if you are the praying kind, join me today in offering a prayer of thanks for doctors, nurses, researchers and modern medicine, and for those receiving treatment today and those caring for them.

100 Days, 100 Nights

Reposting from my Caring Bridge post of yesterday:

I posted the song by that title (above) on my Facebook page this morning, but I don’t think anyone “got” it. :)

We made the trip to San Antonio today for my 100 day follow up appointment. I had them take blood from my port because it hasn’t been accessed in a month and needed to be flushed. That’s something I’ll have to schedule monthly as long as I have it.

My blood work was great!

I saw Dr. B’s Nurse Practitioner and she said she hopes they never see me again. :)

Sharona was replaced by Natalie, who carried on, always ready with a hand wipe.

Sharona was replaced by Natalie, who carried on, always ready with a hand wipe.

I am pretty much free to do whatever I please now. I still need to be careful, though, as I have less immunity than the normal person and it can be harder to shake an infection once I get it. Wash, wash, wash my hands – preferably with good old soap and water. My friend, Rebecca, says I need a Sharona. (Only Monk fans will understand.) I’m accepting applications.

If I get sick and don’t start to feel better after 48 hours I am to see my doctor, not just shoulder on as I would have done before.

My skin has been damaged as well and, combined with a weakened immune system, I also have to be especially careful about skin cancer. She recommended that I see a dermatologist soon and always use sunscreen, wear long sleeves, wide brim hats, etc. I’ve never been very good at daily sunscreen, so I have a new habit to develop. And it’s time to go to the dentist.

Vaccinations begin at 6 months – sometime in August, I guess. I forget what is first. Then more at 1 year (DPT and some others). Then those that contain live viruses (MMR) at 2 years post transplant.

Do I look like a person who doesn't like pills?

Do I look like a person who doesn’t like pills?

When I asked about my peripheral neuropathy, she said that she could tell by looking at me that I’m not the kind of person who likes to take pills. How could she see that? I wasn’t wearing a sign or anything… She said some patients have had good luck with vitamin B6. Others have tried Wellness Formula – one patient especially had good success with it. She didn’t observe by looking at me that I often consider herbal supplements as another form of “pill.” I’ll check it out, but may see if yoga and massage do the trick without any pills.

We were both a bit confused that Dr. T didn’t order a PET scan for me as it was in my discharge orders and I specifically asked about it a couple of times – and that the CT scan I did have was only of my abdomen. Maybe he’ll replace the next scheduled CT scan with the PET.

When I started writing this, I tried to google the link between stem cell transplants and skin cancer. I didn’t find a lot, but I did find that, in general, I am now at some increased risk of several cancers. Good to know so I can be aware of the possibilities, but best not to dwell….

Although I wasn’t nervous about this appointment, I was really tired afterward – the kind of tired you feel after you have been through something stressful. I think it was being back in San Antonio, having my port accessed, smelling the heparin to flush it out as it was over and over again in the hospital, the focus on what has transpired …

I am happy to be doing so well, but I am so sad right now about friends facing their own rare diseases and young adults losing their lives in car crashes and young people with cancer. On the drive home I was visited by a memory of myself when I was in 3rd grade and struggling with the realization that life can be unfair. There was a girl in my class whom I thought had a hard life. She didn’t seem any different than me. We were just a couple of good kids who liked to play and did our best in school and maybe thought our teacher was too strict – why should her life be more difficult than mine? The conclusion my 3rd grade self reached was that if your life is easy – going smoothly, it is so that you are available help others who are having a hard time. I decided that is God’s plan. I think it’s time to get back in touch with my younger self and recognize my privileged position of being restored to health. (Well almost!)

And on a lighter note – I have half-length eyelashes…. long enough that if I put mascara on, they almost look full grown. And my hair looks like it’s coming in darker – except for the white hairs (!). Christina thinks it looks kind of gray. We decided “ash” brown or something sounded better. It’s not really long enough yet to tell what color it is against my pale scalp, so we’ll wait and see.

I guess that’s it for today…. although my still-addled mind thinks I am forgetting something.