Chemo may be over, but I have a long time ahead without hair. I find myself inspired by some pretty creative people out there, who know how to use fabric and tying techniques... Alicia Keys for example!
Little Edie, from the 1975 documentary Grey Gardens is probably the most creative of them all, when it comes to head covers. I just had to revisit the film about Jackie Kennedy's cousin, who lived for years with her mother (both recluses) in a crumbling mansion. It was hard not chuckling at the 57 year old woman, as she pranced about in one odd costume after another.
It's unclear why she lost her hair, but she became very clever at using more than just scarves to cover her head. A sweater, fastened with a broach was a favorite. As I watched this time, I was more focused on the head decor than when I watched years ago. I also found myself more sad watching the dysfunctional pair, living in their odd, private world. I decided i should channel Edie's creativity, but try not to make fun.
Creativity at the Cabin
So I kept Little Edie's creativity in mind when we were at the cabin a few days ago. We had some fun, stretching and twisting fabrics onto our heads.
Don was able to find a curious internet deal and ordered a set of Kingree Outdoor Multifunctional Sports Magic Scarves!
Taking Our Pick
We each picked a fabric design we liked...
...and had a little fun with the simple, tubular pieces of stretchy material.
We didn't have broaches or fancy textures like Little Edie, but we did our best. I can only imagine how much fun she would have had with these things.
Dear Edie, may she rest in peace. I'm going to try not to feel sad thinking about her quirky behavior and existence. I'm just going to focus on her odd yet positive spirit. Thanks for the inspiration!
Specifically, I'm talking about Lack of Lake Appreciation, but there are a lot of things that don't get appreciated enough.
I used this 5 year old photo for my Smile & Laugh Blog photo, on Sunday. The swan image made me smile and relax. Seeing the photo reminded me that we have a lake behind our house... and we don't make use! The bushes have grown to make it less noticeable, but it is still just steps away. Why do I not make use of the beautiful things around me?
The weather was beautiful on Sunday night. Don and I sat on the patio where we were somewhat enclosed by plant growth. I reminded him about the swan photo and how we used to make use of the lake. When
the kids were younger, we fished and even lugged out the canoe. As we chatted about lake memories, the sun lowered. We walked out of the yard and watched the stunning colors in the clouds and water. Don said, "We should just bring our chairs out here tomorrow evening."
The weather was lovely again. Don graciously dragged 2 patio chairs through our back gate and placed them by the lake. I had to laugh. People just don't do that around here. We brought drinks in thermal mugs. The atmosphere made my bubbly water taste like champagne.
There were fewer clouds so less sunset drama, but it felt peaceful and heavenly. It was a reminder to pause and think about what other things surround me daily, that I forget to appreciate. Is there a different place in the house where I could sit and read? Are there fun dishes I should pull out and use? Is there a forgotten instrument, game, or even a photo album that deserves some attention?
Maybe I should grab a lawn chair and drag some of those things to the front yard next time! That would amuse my neighbors at the very least.
Who Was This?
I listened to a voicemail yesterday and it made me worry that chemo brain was suddenly messing with me. I recognized a familiar accent... but I have a few friends with the very same accent. The voice sounded worried, or let down. "Why haven't you been here? Where have you been?" It sounded like I had stood someone up. Did I forget something?
It finally dawned on me that it was the voice of one of my favorite employees, at one of the 6 places where I've done my Quilt Program in the past 6 years.
Not only did this special person take care of my mom when she moved into an Alzheimer's residence 8 years ago, she helped me with many of my quilt gatherings in the last 6 years.
Early on, I tried so very hard to cover my bases when I "took leave" of my groups. I called directors, stopped by, sent emails and texts. But these facilities, with their ever-changing staff, are busy places. I am just one person of many who do programs. Since one of my groups involves children and another is a group with Alzheimer's, I knew news would be shared cautiously. But I sure never wanted anyone to think I had just decided to stop showing up... after 6 years.
So maybe it's a little odd to send cards to some of my groups. But it was bugging me that anyone would think I had stopped caring.
I contacted my dear friend who had phoned and I filled her in. Then I grabbed some old photos of The Quilt. The photos don't show the quilt "in use" with my groups, but I thought some might at least recognize the colorful old thing.
I wrote a greeting to each group, then included a photo. Yes, I'm wearing a small quilt on my head. I told the groups I hoped to start up in the New Year.
I hope that wasn't a weird thing to do. After all, my Alzheimer's folks aren't exactly wondering where I am. The children at the Shelter who knew me, have hopefully moved on. But it felt good to just throw myself into a card and send a little reminder... that I will be back!
I actually do like the FB notifications that remind me of birthdays. It's so easy to send a greeting and it's a treat being at the receiving end. But today I spotted a reminder for a FB friend, who is no longer with us. I had to catch my breath when I was reminded, to wish Janet a Happy Birthday.
When We Met
I met Janet when her daughter was in my Magic Quilt Class. I soon got to know Janet's sister, when we were on the same tennis team.
Janet and I didn't see each other often, but during these recent months, she has been on my mind constantly. Not because she lost her fight with cancer, but how she handled her fight.
At The Store
I'll never forget the day I bumped into Janet at the grocery store and she shared her news of breast cancer. She had learned very recently and her attitude was sincerely upbeat. I was stunned by her honesty. She just wanted to get that news out there, so no one would be uncomfortable with learning the secret through the grapevine. When I learned my own news, I couldn't get that encounter memory out of my mind. I had been blown away by Janet's brave spirit then, and I was determined to learn from it.
Janet's fight with breast cancer was just the beginning. I'm not even sure how long her good periods were, but even when she was back to battling, she showed up at the tennis court to watch our team play. She chatted and laughed with her dog at her side. I marveled at how she put us all at ease.
So this morning, I clicked on Janet's name and I saw her profile picture from a few years ago. She was laughing with her husband, revealing her perfectly smooth head. Instead of feeling nervous that I was confronting the fact that we all don't survive breast cancer... I was reminded that she lived those difficult years with lots of fight AND tons of joy.
I sent Janet a FB message and it didn't feel strange. I knew her family was celebrating her on this day, but I wanted her to know that many who didn't know her that well, were also honoring her. I wish I could have told her in person how much I admired her. What a silly way to do it, with Facebook. But oddly, it didn't feel silly when I clicked "Post". I have a feeling Janet got the message!
Yes, chemo does it. Even though I've been able to carry on pretty darn well, I still feel 15 years older when I climb (not dash) up the stairs. My eyes have aged and I think like an old person, with a bit of a dragging chemo brain.
But mostly I feel old because my baby girl is turning 30!
I was about Heidi's age when she came into my world... so I guess that makes me old! But as always, we turn the focus towards the positive! All is good once you turn to celebration!
We planned to celebrate at our Hill Country cabin the weekend before. Don and I arrived Friday night and I suddenly realized I didn't have my old hosting energy.
Don mowed, knee high grass (it's been a while) and I just ignored the cobwebs and dust. I did manage to throw up some decorations, though. 30 photos with captions about what we love about Heidi... some serious... some silly.
The air was perfect by evening, with all windows wide open. We took in the sunset from the upper porch and all I could do was sigh.
I haven't been out of town since chemo started and here I was just days away from my very last treatment. Lots to be thankful for.
Heidi and Jamie arrived Saturday morning and we picnicked at the lake.
Chicken salad and games and a National Inquirer to laugh at! It was so simple and pleasant, just spending time.
In the evening we sat on the deck and Heidi opened gifts.
We toasted with champagne and Don did an amazing job with filet mignon!
Candles and cupcakes and games into the night. I love my birthday girl!
Then on Sunday, Heidi and I had Mother/Daughter Day in Austin.
We were able to walk from the apartment, which was lucky since there were ACL Festival parking/traffic issues.
Coffee to Spa
We started with coffee and muffins at Patika.
By 11, we were at a spa for facials, which a piece of heaven for us both. (Mine was modified for health reasons)
Dressed for Lunch
Back at the apartment, Heidi and I dressed for our late lunch. I brought my wig, but Heidi pushed for us to both wear scarves!
We walked to the amazing Wu Chow where Heidi guided me through the process of various Dim Sum options. I managed to bite off the tip of my Soup Dumpling without having it explode!
By 4:00, we were back at the apartment and Don arrived to drive the 2 of us back to Sugar Land. I thought I'd sleep in the car driving home, but I giddily talked the whole way. I never would have believed a few months ago that I could have enjoyed so much while undergoing chemo. In fact just days earlier I had been stressed thinking I might not have the energy.
Thanks to my Birthday Girl (and Don and Jamie) for the celebration!
Day Four is here and it is my worst day, as expected. My eye lids are puffy and I can't stop my eyes from tearing. I opened the door at 9 to my nurse, Augusta and stuck out my already bruised arm, to have my blood drawn. It took 2 tries. My veins are tired of this. My mouth feels numb and my teeth feel like they're not in the proper place. When I laid down for a bit, my body felt like a bloated, sunken ship, sinking into the couch. I can't read, because my eyes won't focus.
But my eyes can take in the oranges and golds on the table. I knew a few days ago that i needed to put out some "fall" to give me a boost. What a treat to have a new season. And of course best of all, this BAD DAY, is kind of IT. I will feel somewhat better tomorrow and then better and better gradually. This is it, for Bad Chemo Days! I find this hard to believe.
In the evening, I ate my Mac-n-Cheese in my cozy house. I stopped thinking about my sluggish self. My worst day was nothing. Hurricane Matthew had been causing "worst days" for thousands in the southeast, all day. My friend in Jacksonville, FL was dealing with decisions of evacuation... and she just recently finished her 12 rounds of chemo. Then I got a message from a dear friend about her mother's sudden death...
My focus is different now. Not only do I have friends dealing with worse, worst days... there are all the people I don't know, in devastated Haiti and the Bahamas... Tomorrow, my brain will be less foggy. I hope I can figure out a way to be helpful.
Don was a cute birthday cowboy years ago. He was also a a fine cowboy-chemo- buddy yesterday.
But today is Don's birthday and I wish the timing was better for celebrating. Don deserves some festive focus today, but our big outing was about my trip to the hospital to get my Nuelasta shot.
Actually our trip to the office was pleasant. It was right after the office lunch break and all was peaceful. Freenea gave me my shot and I didn't feel it. Lala, who had missed my bell ringing after chemo yesterday, came out and insisted we dance and ring a bit.
I even got to sneak some little gifts to some of the nurses and staff who have been so kind.
Then, I realized it was Don's birthday and he should have been in the photo. It's his day to have some attention. I mentioned that he was the birthday boy and suddenly he got some love. It was nice to hear staff rave about how supportive and fun he has been at every appointment, chemo and otherwise. They've seen him playing his support role, more than most anyone. I was so glad for him to get the spotlight for a change.
Next we got to spend some time in the parking garage as witnesses to a couple car scrapes.
Some woman in a gigantic truck scraped one car, then proceeded to scrape another, before heading into the hospital. Don had to do his birthday civic duty, talking to security and police, while our carry outs at Thai Cottage got cold.
And then I started to get all worried about this woman in the truck, who ignored the damage she'd done. Was she distraught or in a daze? Who knows why she was heading in the hospital. Now I'm worried about her!
But we made it home without any scrapes and luckily my chemo blahs haven't kicked in yet. We worked on the puzzle. And we'll play ukuleles later. (Don loves both)
Then there are some presents to open and some cake, hiding in the refrigerator. I'm just glad for the focus to be on this sweet guy for a while. He's been doing nothing but looking after me. It's his turn!
...When Others Aren't
I was in good spirits, the morning of my last chemo! Don and I are were in festive, not exactly matching get-ups. I mixed it up with my embroidered Mexican blouse from a thrift shop 20 years ago, a Guatemalan scarf and moccasins. Don was straight western from boots to hat to bolo tie. We were happy to go get started.
But before we left, I scrambled to gather something for the other patients. Don had ordered a huge box of these wonderful lemon drops... after some research for best treat for soothing chemo mouth. I tagged them with pink hearts, so I could offer something to the patients who might need a boost.
We arrived at 9 and the office was hectic. My dear friends at the desk were working overtime. Poor Lala wore a surgical mask... shielding us from her cough. My happiest team was tied up on phones and looking rushed.
The lab nurses were in decent spirits. One said she used to do embroidery just like the designs on my blouse. We jibber jabbered so much, that I forgot to warn her I needed extra blood work done for my med study. This lead to lots of fretting 20 minutes later when my study nurse came in and they tried to get samples before chemo and my veins weren't cooperating. I had 2 more tries, including the most painful on my hand, before they switched nurses for a fresh attempt. The 4th poke of my morning, was a winner.
Then I waited on blood test results to make sure I was able to go through with chemo. There was a chance my hemoglobin might not be high enough. I wasn't used to being one of those people who might be stalled by needing a transfusion.
So while I waited, I seized the moment and handed out my goodies to the other patients, while all still seemed somewhat perky. They actually seemed delighted and surprised.
The woman next to me couldn't thank me enough. A couple of men spoke little English, but offered smiles and I saw one nibbling, right away. Don sipped on coffee and I gulped down my water, while we killed time. We couldn't possibly be frustrated at the wait when we looked around us.
I was cleared to go, but it still took forever to get hooked up with my "cocktail". There were so many with special needs around me.
2 different men left the room to be sick. One woman had concerns that she would need a transfusion and her upcoming surgery would be delayed. Another woman was weary, but smiley. It was her last treatment also... she had had 14... and I had only endured 4! I ached for these people.
I didn't even care how long the day dragged out. I was almost done with this chemo stuff. I did't even fret about the rough days that were ahead. I'm game to lay low a while before I start getting back to normal. And mostly I was content to spend quiet time in my funny recliner (that likes to catapult me if I'm not careful with the lever)
I flipped through the most incredible book of New York photos and I worked with Puzzle Man Don on a 6 sided puzzle... while at the same time, those drips entered my bloodstream to zap anything bad that might possibly be left in me!
5 hours later, I was given the little bell to ring, for ending my treatments! Dr. P and his wonderful nurse practitioner, Alicia, came out to congratulate. Other nurses and staff rushed in to cheer me on.
I'd been told about dancing, and wasn't sure if that was a joke. But I did a half minute, subdued jig and cringed at waking a few patients from their dozing. But a few clapped and wished me well.
Chemo is done. More lies ahead with return visits and starting up radiation. But the thing I feared the most is over!
Well of course I'm not upset that it's my last day of chemo, today. I've been awake since 3:30, pondering the thought. (those dang steroids in my anti-nausea drugs are keeping me alert) But I'm just getting the hang of this. Is is really almost over?
I'm so grateful that I have only needed 4 treatments, when friends have had 12 and 14! I feel like I'm cheating, practically. And last night when Don and I tried to decide on our "chemo outfits", I was downright disappointed that I couldn't continue right into fall and winter, with all the costume ideas flashing through my head.
So when we walk in this morning at 9, we'll have to play down the "costumes" a bit. They motivate us and amuse the staff, but we have to be cautious about looking like we're having a party when others are maybe not feeling so celebratory. And that's what I've been pondering over mostly. What could I give or share with the others today. Those folks who doze quietly and probably don't want to be disturbed. I have bags of the most wonderful lemon drops that are good for easing that metallic chemo mouth. Or maybe everyone needs a small pumpkin. It's 6:45 am, is the grocery store open? I don't know. We'll see.
It's not that I dislike spas, really. I just don't feel comfortable. Spas sound indulgent and I feel like I should spend my money in better ways. But when my daughter and I were looking for some fun ideas to celebrate her birthday together, one of Heidi's thoughts was facials at a nearby spa. Suddenly I was giddy! This was something we both could do. It's recommended that I not have manicures or pedicures during chemo, but at Viva Day spa, I could have a facial designed to my needs, using organic products. And there was no guilt of indulgence. This was Heidi's birthday treat...that I just got to join in on. Yay!
But I felt anxious the day before. Do I walk in wearing my wig, even though It will have to come off. Same with make up... but I look scary without. So, I put on a scarf and light make up and headed out on Sunday.
Heidi and I sat in this round calming room, sipping cucumber water as we filled out paperwork. Yikes. Who would I even be dealing with? In a private room I hoped? Stephanie came out and introduced herself to me. She was young and relaxed. I felt at ease.
The room could have seemed intimidating after months of examining/operating tables and equipment. But there was calming music and some peaceful artwork. I wasn't sure if Stephanie had had time to read my requests.
I told her I couldn't do the full treatment. I told her I was undergoing chemo and I hoped she didn't mind dealing with a bald head, because I was dying to take my scarf off. "No problem, " She said gently. "This is going to be all about love and healing." She smiled with enthusiasm and sincerity. I loved her.
She left the room and I settled into the heavenly cushioned bed. The soothing music played and Stephanie spoke softly making sure I was okay. For an hour she used endless products with so many lovely scents. She worked those warm oils into my face, shoulders, hands and yes my head! It was odd to suddenly have my head exposed to someone, but I quickly sunk down deeper into the cushions and felt like a trusting child. Her fingers smoothed every worry from my brain. When the hour ended, Stephanie gently asked how I was feeling.
I could barley open my eyes. I sighed. "You have magic fingers... I laughed softly. "No, healing hands." She smiled, back. "Well, I did it all. I even pulled out my crystals and I prayed." I didn't even know what that exactly meant, but it worked! "Thanks for dealing with my head. That felt wonderful."
"You're so brave." She answered. "You're going to be just fine."
A year ago, I would have laughed at such a cosmic approach. I embraced it today and she embraced me before I left.
I met up with Heidi and we shared about our totally different experiences. I have to thank Heidi for sharing her birthday and allowing me to experience the most relaxed moment in the past 130 day. What a treat.
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. This time it was the invasion of COVID and it affected every person. I ranted for a year, until I got my COVID vaccine in March 2021.
CORONARY Artery Disease was the reason I restarted this blog on September 26, 2021. This time it was my hubby 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!
Navigating This Mess!
The most recent post is at the top, from coronary posts in 2022, back to cancer posts in 2016.
To find past posts, look below the "Archives" section, to find "Categories".