Day +365

In some ways, it has flown by. It’s been a year now since I had my transplant. The day we call day zero was August 19, 2014.  Last year, I arrived at the hospital on the 15th, had chemo for two days, then a day of rest. The 19th was the day my cells were returned to me, and sparked the beginning of what we hope is a brand new healthier immune system.

So far, so good.

I could only think of one way to celebrate.

I made the trek to Stanford to visit my old hangout, the E1 unit. My friends Kerry and Jan, both of whom had visited me there last summer, came along.

I was a little nervous at first, because I didn’t want to be in the way. That fear lasted about 2 seconds. As soon as I got there, a crowd gathered around. It was the nurses’ idea to get a picture, so we posed. They remembered me… “You were in 124!”. Yep!

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I had a bag of goodies which included some cookies for the nurses. In addition, I tried to think of things the patients might like. One of my favorite things I had while there was the soft blanket that friends Gina and Fatma had given me, so I brought a couple of those I had purchased, along with some colorful scarves. I washed some of my hats and brought those too. They have a basket where patients can choose hats to wear. I took a few of the chicken photos from last year and made some cards for the patients too. I received so much last year and it felt good to be on the giving end for once.

I asked if any of the patients might want a visitor and they had someone in mind. I spent some time with Theresa, who had been there six months! She was dealing with “GVHD” which is Graft vs Host Disease. This is a potential complication of an “allogenic” transplant, the type where a donor’s cells are used. (I had an autologous one, with my own cells)

Theresa told me she had an almost 2 year old son at home and I felt like my heart was going to break for her. I cannot imagine what that must be like. We talked for a while in her room, after she did a few laps around the unit. She hoped to be home for his birthday at the end of the month. In spite of her rough road, she had the most beautiful smile, especially when talking about her son. I have been thinking of Theresa each day since. If you are the praying type, please say one for her.

The drive back in commute traffic made for a long day, especially after parting ways with Jan and then Kerry. But it was one of those days I realized I would not have wanted to be anywhere else. It just seemed right.

I have had a terrific year. Good by any standards, not just for someone recovering from a stem cell transplant. I am not sure why I am so blessed, but it has made me grateful for every day. I think there is more I’m supposed to do with my life. I’m excited to see what the next year brings, one day at a time.

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And yes, Erin did this to mark my first re-birthday!

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Hair of the Dog

Hair of the Dog…hmm, as in ‘…that bit you?’

You probably thought I was going to talk about a hangover cure.

No. That would not be it.

I have a serious medical condition, Silly.

I don’t drink.

Just kidding. Of course I drink.

When I found out I had to be on a low sodium diet, the first thing I looked up was white wine. With only 5 mg per glass, it’s probably one of the best things I can have!

But I’ll get to the mane idea, here. On one of my facebook forums, someone brought up that their hair was like a Poodle after their transplant. I can completely identify with that! I got to thinking, I’m a Poodle too, and I have been several other breeds along the way.  Back when all this started, I was a Cocker Spaniel. I liked it, and I want to be one again.  But hair growth isn’t anything I can speed up. I’ll be a Poodle for a while. But it beats being a Xoloitzcuintle.  That’s a breed that is hairless. It’s pronounced  “Zoh-loh-eetz-kweent-lee.”  And I’ve been there, done that.

If you’re new here, last year I had chemo that preceded my stem cell transplant. I lost all my hair. Hence the “Xolo”. It was a big deal and at the same time, it wasn’t. A life adjustment for sure, but I knew it wouldn’t be permanent. With only two doses given, I knew that while my hair would fall out, it wouldn’t be long before it started to grow again. It seems like a hard thing to go through, but let’s face it, when your life is at stake, hair isn’t all that important. And these days, who hasn’t known someone who has gone through it? It’s hardly a stigma. I didn’t get all wigged out about it.  I started walking around without hats way before I ever thought I would, and I received nothing but kind remarks from people who really seemed to care.

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Above, me on September 1st, 2014. It was a relief to have my head shaved by the nurse as the process of hair loss was becoming a very messy problem.   I was a Xolo.

(You’ll have to use your imagination with my drawings. Just know the one above is a hairless dog. I’m careful about taking photos from the internet so I tend to draw my own.  I guess you can call them sham pooches.)

In November, I started seeing a few hairs coming in. Poor lonely little creatures. When I took this picture of Fern, my newest chicken, on Thanksgiving, I actually thought I had hair! I didn’t have much. She was molting at the time and it looked like I was too!

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But gradually, there were enough hairs to cover my scalp. By my birthday in January, I was a Labrador Retriever. And this pup was ready to scarf down some cake.

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Pig tailing off the Lab phase, the curls started. I had been told my hair would come back in curly. It’s an effect of the chemo. Which is OK, but they were relentless. No amount of blow drying would straighten them.  I’ve been told it will take a year. I wish I could shave some months off that, but it’s out of my control. I became a Curly Coated Retriever. (A breed that has wavy to curly hair that is fairly short all over). Below, with friend Martha.

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After I parted ways with the Retrievers, the next stop for this hair plane ride was Poodle Town, where I am stranded today.

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At times, I fantasize about a magic pill that will make my hair straighten up and fly right, but it’s not to be. Erin got me through the spring with a flat iron so I could have bangs again. (It was only then that I stopped doing double takes in the mirror each morning…I mean, who was that person with a forehead anyway?) I use gel to force the curls to go behind my ears and now my bangs are long enough to blow dry straight. The rest of my hair just needs to grow. I gently caress it each day and whisper into it: “Grow dammit, grow!”. But, really, if this is the most hair raising problem I have, I can brush it off. Life is pretty fabulous!

Still, I do look forward to joining the Cocker family again. That’s why I have kept my facebook profile pic the same. It’s not to tease myself.  It’s called envisioning your goals…a positive mental picture…keeping your eye on the prize. And I will get there eventually!

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So, there you have the highlights of my tail.

I bid you a do!

But that other thing? A couple of Tylenol and try to drink as much water as you consumed in alcohol before going to bed. I have no idea if that works…cuz you know…. I wouldn’t know. 🙂