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?
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 singing 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.
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.
Now, I'm suddenly at home and where is everybody? Well, now I get it. My world has slowed down, but the lives of my local friends remain the same. Many of them travel, some are still busy with kids, some work and juggle many roles. I was too busy to realize all that my friends did. And that's probably why I'm drawn to them.
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.
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.
Washing the Wig
It seems so wrong to press this sleek, synthetic wig into soapy water. But I did it. The bottle of special wig shampoo had about 3 words of directions, so I actually found a YouTube video to guide me.
That really does look awful. I pressed it all the way under and gave it a few pats, then let her soak for 5 minutes. A quick rinse and a few squeezes and shakes. Then I sprayed on the special conditioner.
I put the wet thing right on the plastic stand. That's it! It even smells pretty good.
I'm teasing about Wash Day Woes. Wig-washing was today's entertainment. It was over so quick I didn't have time to sing a song, like I might have done in the shower... back when I had hair to shampoo.
Wigs are so easy. I just wish I liked wearing it more.
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!
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!
My big sister flew from Oregon to spend a week and and she left yesterday. When she arrived last Saturday I was feeling pretty perky, which is how I like to be when we're together.
Over the years we've united for fun, but also to team up, helping my mom who had Alzheimer's.
We're a good team. We get a lot done and we laugh our way through it. But we weren't a team, this time. She was coming to help me.
But we did have fun for few days when I felt well. And I can say she teamed up with me when we went to chemo. She put on a scarf and some festive beads. We passed time with silly games and talked and gabbed.
And Jenni fattened me with lots of her cooking. Chicken pot pie and stir fry, Tom-Kha-Gai Thai soup, enchiladas and yummy mac-n-cheese from scratch. We were a team again, because she cooked and I ate.
What a treat and so many leftovers!
Before and After
When I felt worse the third day after chemo, we floated in the pool and worked on puzzles.
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!
I was feeling a little more lively by Saturday. I was well enough to once again push Jenni to do something silly with me. We painted the Styrofoam head that holds my goofy looking half wig. Then we headed to the airport.
Good Times Ahead
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!
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.
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.
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.
I can honestly say I like this photo, taken yesterday at Round # 3 of chemo. These smiles aren't fake. I was feeling energized, surrounded by my crazy sister and hubby, dressed up in scarves with me. I'm lucky to feel fine on days of treatment.
On Monday night, Don, Jennifer and I used some scarf tying videos to come up with some outfits for chemo. 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.
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!"
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!
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!
We thought we'd avoid all the snarling 5 pm traffic, by picking my sister up at the airport on a Saturday! No such luck. The Beltway was down to 1 lane for construction and a major fender-bender caused a huge slowdown as we're neared Bush International. But a funny thing is, I've grown calmer about driving issues with these months of cancer. Just so I get there and I don't get in an accident, who cares. We just allow enough time.
I wasn't quite the same way last week when the kids were at home and we headed out to lunch. Don was avoiding Highway 6 traffic and took us on a quieter route by the library and post office. There wasn't another car on the road, when a sluggish sedan pulled out from a church lot right in front of us and drove 20 in a 35, I was found myself annoyed. "Dad, why didn't you honk." one of the kids questioned. "Mom doesn't like me to honk." He laughed. It's true, I hate to honk when I don't know the story. A sad person, lost in thought or an anxious elder... But this time I groaned with the others. The car was plastered with rude bumper stickers supporting a candidate who scares me. And lots of angry, gun support stickers as well.
"Pull up beside this car!" I asked Don, when we turned onto Highway 6. I have to see who this is. It was a middle-aged man, texting away, with a cigarette hanging out of his mouth. "That's ridiculous!" I was ready for my road rage. "Pull up next to him at the light. I'm going to roll down my window, get his attention, smile and remove my wig."
The kids laughed in the back and then begged me not to. I guess I really didn't want to mortify my kids. But I did want to confuse that man. I like to ease my stress by confusing bad people. I'm not sure what that says about me.
Yes, I know this wig is okay, but I still feel like I'm playing dress-up. I've had it thinned, but I'm finding ways to tame it some more, like with a scarf. This is so silly, like I'm trying to make it flat and limp like my old hair.
While I was cleaning out my workroom, I found my old church veil in the costume box. It had the perfect weight for pressing down the poof, but I don't think wearing the wig and veil out in public will solve my self-conscious concerns.
Oh, but it was fun being reminded of when I bought the veil in Venice at the age of 11. After years of wearing boring scarves to weekly mass, I looked forward to being one of the elegant, lace-wearing women at church. I couldn't wait to return to the Tallahassee and wear my veil.
Of course by the time we returned home in 1969, the Catholic church no longer required women to cover their heads. I still loved my lace, though.
My first real outing in the wig was when Heidi and I went dress shopping with Chali. It was a special day, watching my soon to be daughter-in-law trying on beautiful gowns. Heidi and I sat, sighing and aww-ing over each new look. But one moment, I caught a glimpse of myself in the fancy mirrors. Who is that lady with the prim and proper hair? I need to stay away from mirrors.
Caution Against Wig Faux Pas
I feel more comfortable in scarves and hats, but I forced myself to steal the wig off Betty-Lou, the wig stand and wear it more this past week. I wore it out to lunch a couple times and I actually forgot it was on my head. But getting more relaxed can be a problem. As I sat chatting away, I caught myself a couple times, messing with it absentmindedly... tugging at it, fiddling with it.
Now I have to beg my friends to alert me of bad wig behavior. I don't want to be like an old granny, so used to her false teeth that she just removes them in public. I also need friends and family to point out when my wig is lopsided or just odd. I'm the kind of person who can run out the door with 2 different shoes. If get too routine about it, I might rush out, wearing the darn thing backwards.
Creative Wig-Wearing Idea
I was at home the other day, doing my big work-room cleaning project, when I got hot. I was wearing my wig and I'd had all I could take of it. I was too tired to take it downstairs to Betty-Lou. I looked for a place to lay the wig carefully. But with all the sorting piles and clutter, I was in real danger of accidentally donating a wig to Goodwill. So I just loosened and lifted the darn thing to cool my head. As I worked away, I chuckled to wonder how odd I must look.
I leaned towards a mirror and gave myself a good laugh, to see Kristen Wiig's, Dooneese! The nutty SNL character, who claps Lawrence Welk's champagne bubbles with her tiny hands, is my all time favorite K. Wigg character! Now all I need are a pair of those tiny hands and a pink dress and my Halloween costume will be complete!
A Visit From Heidi & Jamie, Scott & Chali
Yesterday the house suddenly got quiet after a busy Labor Day weekend. I've always been sad when my kids leave and I was this time. But mostly I was blissfully exhausted and happy. A week before I'd been excited and worried about their visit. It's scary greeting your kids for the first time since chemo. Will I look sick? Will my wig look stupid? But mostly I worried that I wouldn't feel well enough to keep up with all the fun we had planned.
But I felt better than I have since chemo started. Labor Day luckily came at a good time between treatments. But mostly, I think I got my energy from the kids.
I got the wig debut out of the way and then I was fine. I was too busy getting excited about the first thing on our agenda, to fret over my head. On Saturday we had a girl outing. Heidi and I got to help Chali with a little wedding dress shopping! What a treat to watch Chali try on gorgeous dresses. Best of all, we got to be with her when she made the final decision!
Home Time... Music and Games
Besides our big outing, most of our weekend was spent at home. One night, we did some jigsaw puzzling, while some old LPs played on the turntable. Then we hit the big game closet and discovered some oldies... some favorites and some stupid ones that need to be tossed. But this group can make the worst game fun. On the last night we had 5 ukuleles playing. I wish I could say it sounded wonderful.
Lately, I've been making use of the pool for exercise, but I don't remember the last time the kids were here to enjoy it together. In memory of Labor Day pool games long ago, we had a little Splash for Cash competition. There was lots of lounging and best of all, 7 month old Lola had her first swim!
Food and Drink
I've been steering clear of alcohol, so my Mai Tai was mostly juice. But I did have a sip of champagne cocktail the next night when we toasted to Scott and Chali's engagement. And luckily my appetite has been good, so I didn't turn down any of our BBQ feasts!
The other day I discovered a collection of scarves that I once used in movement classes with children. The colorful scarves will eventually make it to Goodwill, but I decided I'd wash all 30 and wear a few. On our last night, we had a "contest" to see who could dress most creatively with scarves. These photos don't come close to capturing the craziest, but I have to be fair to my family when posting. Don and I are wearing sunglasses to conceal our identities.
All 3 evenings involved lots of silly games. No photos or films to capture the funniest, which involved lots of debate, theatrics or singing. We found some good ways to wind down on 2 evenings. Heidi brought Sephora face masks for one night. It would be just too scary to share photos of our group, lounging with our eerie, yet heavenly spa masks. The last night we soaked our feet in tubs with lavender products. Even Lola became calm with the relaxing scents.
Not Happy List?
So this is a lot of happy talk for a Not So Happy blog. But seeing the empty pool and house is kind of sad. And I guess I'm tired.
But I wasn't overworked. Everyone pitched in with cooking and cleaning up. I guess I'm tired from having fun! I sure can't complain about that.
100 days ago when I was first diagnosed. I never would have guessed I could enjoy a celebration like this in the middle of chemo! I think that's worth sharing.
I miss Molly. Her soft ears were like a security blanket! Having a loyal animal to lounge with all these months would be such a treat. But Don and I didn't get another pet when Molly died. We started traveling a lot and it didn't make sense.
I started this complaining list/blog, in May 2016. I posted 200 gripes about my breast cancer and then I was done.
On March 13, 2020, I started venting all over again, when another disease (starting with a C) interfered with my life. Only this time, it was affecting more than me. I ranted for a year, until I got my vaccine in March 2021.
Coronary Artery Disease was the reason I restarted this blog on September 26, 2021. This time it was Don who was dealing with a worry that started with the letter "C".
Coronavirus and Cancer, Coronary Artery Disease! All are evil, but none can totally get me down... if I vent! I usually end up feeling a little more positive at the end of each post!