I once had packing down to a science.  Whether it was an overnight to the cabin or a 4 week road trip, I pretty much had the system down.

Today, I'm leaving town for the first time since chemo.  It's just the weekend and it's to the cabin. Simple.  I keep some clothes there and a hairdryer...  Wait.  I don't need that. But there's all this new stuff I have to think about.  Should I wear my wig in the car or carry it in a box? Wig stand?  That's ridiculous, to have to pack a wig stand.  I wouldn't bring it at all, but there's a birthday outing for my daughter and I want to have the option.  Oops, I almost forgot my thermometer and log book. I still take my temp twice daily for the med study I'm in.  And there are a few meds I shouldn't leave behind.  My pillow?  I'm not a person who packs a pillow, but I've gotten pickier with sleep.  

And then there are birthday goodies and food to pack.  We're having a celebration and I'm excited.  Did I pack the decorations?

It will be interesting to find out what my chemo brain forgot, when we get there! 

My name is Elizabeth, but I've always been Beth... except for first grade when my strict teacher insisted I go by my proper name and print out all 9 letters.  

My nurse practitioner calls me Beth.  She's the one who discovered the lump that lead to this journey. Calling me by my preferred name is just one of the many ways she has always put me at ease. Why can't other doctors and nurses do the same?
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I no longer think about it. I just come when I'm called, by whatever name.  I've been called Elizabeth by about 30 different nurses and doctors and receptionists in the last 125 days.  I'm more interested in my care and treatment than my name.

But what about some of those patients I see in chemo who look so very weary? I know some of those people are hurting and it could offer more comfort to be called by the name they prefer.  What's so hard about having one of the questions on all the forms we fill out, asking what we'd like to be called?  It's so simple.

But I must give credit to the 2 happiest people in the oncologist's office. Paige and Lachella! They work at the front desk and they are like a comedy team when they greet folks. On my first visit, I told them both that I went by Beth. They practically sing it when I walk in the door. They even call Don, "Mr. Beth".  But the silliest thing is, I was the one that flubbed on names. I misunderstood and called Lachella, Michelle for a while.  She was too busy humming along with her smooth jazz to notice at first.  One day she scowled and then laughed, "What did you call me?"  I was mighty embarrassed. Then she sighed and told me to just call her "La La". So I do.

 
​Detached

​Even though I'm not trapped in my house and I do communicate in numerous ways with friends and family, I feel sort of detached. Why does it feel different than a year ago? This time last fall, Don and I were traveling for 4 weeks. We were more cut off from "home" then, than I am now... but I hardly noticed.

​In the past few years, I've felt twinges of guilt when I've been in and out of town, too much. Book Club generously worked around my schedule. My neighbors were incredibly patient keeping an eye on our empty house.  And when I was home, I was tied up with Senior Programs and playing catch up.
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Actually the distance has been just about right. I wouldn't want to be bombarded daily with questions and pep talks.  I'm a person who enjoys alone time and since chemo I've needed that. But being more anchored to my home for a while has in some ways helped me connect and reconnect with a few folks... and dogs.  

This stupid thing called cancer has gotten in my way, but it has forced me to give in and accept more.  I've learned to be okay with help and I appreciate every bit of kindness that has come my way.  Sometimes it's just a surprise email or text.   "I'm at the store. Need anything?"  Or an email with a photo or joke.  

And there have been gentle, no pressure offers to stop by or meet up.  I'm sort of a cozy hermit, so I have to push myself a bit.  Having someone "stop by" is almost novel.  There's something pleasant and almost retro about it.  I had to convince myself at first that I didn't have to play host or clean up or prepare for that.  I'm learning. 
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So, it's a nice balance right now. I don't have the energy for lots of socializing, but I know interaction usually boosts me! I'll try hard to remember in the future when suddenly someone I know, must slow down with an illness or a problem. It takes so little to connect these days.  I'm going to be better.
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​Magda

Skype can be intimidating. Unless you do it all the time, it feels awkward.  Don was going to Skype with his friend in Guatemala today. We stayed with Javier's family a year ago, so Don asked if I wanted to get on and say hi. I was wearing a scarf and not looking so great. I declined.

I was in the other room and I could hear Don's voice speaking Spanish.  Then I heard little Magda. She was 4 when I saw her last. She was my buddy for 10 days! "Come on, Beth." I nagged. In a second I grabbed my half wig and threw on a hat. I peeked in Don's study and gestured. But Don had returned to business with Javier.  

I slipped out of the room and pouted. Why am I such a wimp about Skype?  Why was I so worried about how I might look on the screen to this wonderful family? Then Don appeared and asked if I wanted to step back in and say hello. I rushed back in there and Magda and her daddy smiled back from the laptop.

I don't speak Spanish, but we laughed and I sang Happy Birthday to Magda (a couple months early) and Javier told me to be strong and I showed him my arm muscle. I shouted adios and I was off to let them chat. 

What a fix! What a reminder that human interaction (even on Skype) is important. And I was able to get my "kid fix" on one of days I'm supposed to stay away from people!
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Dumb Fortunes

I've been lucky that chemo hasn't changed my appetite much and I haven't lost  my love of Chinese food. But I'm growing less tolerant of my fortunes. Actually this fortune I received a few weeks ago was fine. But I wasn't wearing my reading glasses. CAUTION! Do not attempt reading fortunes without glasses, if you are in a vulnerable state!  I somehow missed  the very important word "be". That was depressing.

I wasn't feeling vulnerable when I ate Chinese the other day.  I may have no hair and my lashes are disappearing and my skin is... odd.  But I was hungry and in a good mood. I put on my glasses this time, although the cell pic is blurred.

Oh come on!  I don't need to hear about the beauty on the inside thing!  I was hoping for something so much more uplifting!

Over the years we've united for fun, but also to team up, helping my mom who had Alzheimer's. ​

Teamwork
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We shopped at Costco and bought a printer and she used her tech skills to get me all set up. ​When I felt worse the third day after chemo, we floated in the pool and worked on puzzles.

Day 4

That was my "worst day" and I expected it.  I felt just like I look, in this rocking chair photo... the same rocker that now sits upstairs in our game room.  

​I wasn't feeling great, but Jenni was leaving the next day and she'd come up with the plan to recreate the old photo pose... even though it was obvious we might have a bit of a problem squeezing in the old chair! 

We tried. Don grabbed Jenni's Nikon and we attempted a few shots.  I was feeling pretty sluggish, so thank goodness I wasn't having to recreate a leaping pose! But even a resting pose was insanely hard to pull off.  It was exhausting... and funny.

The chemo blah in me wanted to say, "Forget it. This won't work."  But I wanted to be a good sport. I can't begin to tell you the number of requests I've made of my sister during our child and adult years.  Jenni has always gone beyond the call of duty to go along with my fun... as in this list below of  50 things I wanted her to do with me, for my 50th birthday!

http://www.tributewebdesign.com/beth/list.html
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Day 6

​I was feeling a little more lively by Saturday.  I was well enough to once again push Jenni to do something silly with me.

But her goal wasn't fun, she came to help.  I'll remember how she she stepped in, helping with everything from cooking to foot rubs. But when I see this fine work of art (yet to be named) I will be reminded that yes, we did have some good laughs as well.
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And now it's all about the future.  I'm looking forward to giddy times ahead, when we are both healthy and game!  Thanks Jennifer!
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Left Arm
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Since I've had lymph nodes removed, I'm supposed to use my left arm for everything... shots, blood pressure, IVs, etc.  My left arm has lately taken a lot of abuse.  Before chemo on Tuesday, I bumped my arm trying to move a TV and I now have a creepy bruise.  The night before chemo, I cut my left pinky chopping vegetables. So I went in for chemo on Tuesday with bruises and band-aids.

Frene

I had a new nurse on Tuesday and I had to show her Ms. Donkey, my mascot.   The donkey was keeping an eye on the arm poking.  Freenea looked serious as she worked, but she was good humored and thought Ms. Donkey was quite fun.  She did have to poke me twice to get the IV started, though.  It happens.

Wednesday
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​When I returned on Wednesday for my Nuelasta shot... in my left arm, Freenea barely recognized me with my fluffy wig. She said she'd been thinking about donkeys, since the day before.  Giraffes are her thing and she has a few posed by her computer. Our animals made friends.

Freenea is good at dealing with people like me.  She used to work with children. After a more serious discussion about her work with kids and cancer, I was reminded of how lucky I am. ​ Dealing with myself is one thing.  I can only imagine what it would be like to be a parent (or nurse) of a child with cancer.  No more complaining about my arm today.
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​Fake Smiles?

I can honestly say I like this photo, taken yesterday at Round # 3 of chemo.  These smiles aren't fake. 

There was a lot of laughing and honestly, I had fun.

Jennifer had her Nikon in the bathroom and she was snapping away at our process.

Don was probably having the most fun. He grew a little facial hair in prep for his possible biker look on Tuesday.  He sported a few looks with my half-wig, but those pics would scare children.

I grabbed Jennifer's camera at one point, because she was pretty darn creative, too.  I'm not sure what that top-knot is, in the first photo. My big sister has always been a good sport, going along with my fun.

Honest Photos...
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​But today, when we laughed over the photos from Monday night, I could see too much in the photos of me.  I was chipper in an earlier image, but Jennifer's camera is way too clear. The photos from 9:30 at night captured some images I didn't want to see... or share.

There was too much light in that bathroom and the candid close-ups were eerie. "Don't use these in your blog!" I laughed, since Jennifer blogs as well. "Oh man! These photos are scary..."  ​

I cringed at how her images revealed the changes in my skin and eyes. Jennifer agreed that I do look different from chemo.  ​

​I gave her a brief reprimand for her honesty. "Don't say more or I'll write you up in my "Not So Happy Blog!"

In Truth...
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​I'm actually glad to have had that honesty. I need to know that I do look different now and that my worn out appearance staring back from mirrors, will not always be there.

 I'll keep the photos she shared with me, but I don't have to put them online. I can wear sunglasses when I feel like it. I can laugh at the funny scarves and mope about aging close-ups. But I know the Old Beth is coming back. I'll be older... but at some point in this journey, I'll start to feel and look a little younger!
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We've all heard the recent rant against EpiPen, for hiking their prices.  I know Ambien is not exactly as high priority as Aids drugs and other serious meds that have skyrocketed. But I just need Ambien for 3 days! Yesterday I called about picking up my prescription, to combat the horrible sleep issues I have with my 3 days of anti nausea meds, which have steroids. My doctor specially prescribed Ambien because the generic didn't work at all for me.  The Ambien was going to cost me $500. since my insurance would only cover the generic. "Never mind." I told the technician on the phone, who had already consulted with the pharmacist.

So today I have Chemo Round 3 at 9:30 am.  I've been awake on the couch reading since 3 am.  But that's okay.  My sister's going along and Don will be there for a bit, when we make our entrance dressed in our Chemo Day - Clothing Theme.  I can rest in the afternoon!