I was in the best mood with good energy, because the kids are coming for Labor Day.  All 4! Heidi & Jamie and Scott & Chali!  With their crazy school and work schedules and living in Austin and New Orleans, we've only had all 6 of us together  one time, in 2 years.

So I was in good spirits and I was doing too much.  Besides getting the house ready, I was trying to finish my project, reorganizing my workroom.  My sister called when I was taking a break. She laughed, because she knows my technique.  It's a bad one.  I pull it all out. Every closet every drawer.  Teaching supplies and art materials and props that go back over 30 years. Things were flying to trash, recycling and Goodwill piles.  But I was feeling good and my nurse called and said my blood count had shot up.  I was in good shape.

It hit a nerve.  3 months ago, I was sort of frantic when I called G.  "Is there anyway you could squeeze me in tomorrow?" She'd done my hair for 15 years, so I felt comfortable telling her I just found out I was having a surgery and I wasn't sure what was happening after that.  The next day I headed in for my appointment. I hoped G. wouldn't get too emotional. I knew there would be a big hug waiting and some consoling. But when I walked in, she beamed.  "Hey what's up!"  I stared blankly.  "What's wrong?" She asked as if I'd insulted her.  "I have cancer, G." I felt annoyed having to remind her.

So I guess G's text was just reminder that I (and my cancer) am not on the forefront of everyone's mind. I get that.  I'm guilty of forgetting important happenings in the lives of others.  But it still made me mad.  I texted back a quick answer. "Nope. I don't have hair."  Yes, that was a mean way to remind her.  But I was worn out from taking on too much.  My giddy mood was zapped along with my energy. I started fretting over seeing the kids for the first time, since losing hair. What should I put on my head to soften my greeting? The wig is still a jolt... think. 

And then I remembered, everyone's coming to have fun, not to see me bald. We're going to be playing games and barbecuing and playing ukuleles and making tiki drinks and swimming! I can use my awesome, retro bathing cap!  Plus, I still have lashes and brows, I'm not that different.  I can't wait!

I don't ordinarily wear much makeup, but when I wear none, I look sort of ill.   So I guess that means more make up now.  I've been warned about the yellowing of skin tones... "Your bronzer will be your new best friend."  I'm going to try to get some tips on using special products, for when I lose lashes and brows. That's actually scarier than losing my head hair...  because I can't hide my face under a wig.

2 Problems

Even in high school productions the "makeup team" didn't want to do my makeup because of my tricky eyes.  And now with aging eyes, there are so many more layers of lid! Even with the magni-mirror, I couldn't focus without my reading glasses. I attempted to draw a line on my upper lid and the result was comical. It looked almost as goofy as the crooked Joan Crawford brows I created using the stencil, wax and powder.  I even tried to take a selfie with my eyes closed, so I could study where I'd gone wrong. Sorry, those photos have been deleted.

Clown Makeup?

I think I'd feel more comfortable putting on clown makeup. With my new head, I could really look the part.  I've been thinking about my friend, Jenny.  We were birthday party clowns when we were teens. Maybe I could revisit that short career. Then I thought about a clown my family spotted a few years ago. He was casually applying his makeup on a park bench. He wasn't young, yet he didn't seem to strain to see what he was doing.

One More Solution 

Today I spent time cleaning out loads of old teaching supplies, props and costumes. I ran across these paper masks that Don and I posed with, 30 years ago.  Maybe I'll hold onto these, just in case.

So I put my hair in a decorated bag and stapled it shut and tossed it in the trash. It may seem odd that I kept that hair for over a week. (Actually I forgot about it) But it sure made for a no-big-deal-good-bye-hair-event.  It's a good reminder that it takes time to be comfortable with things.   Or without certain things...

I've been "staying in" like a good patient for a week.  I'm slowly getting my work room organized.  This is a huge task and I'm taking long breaks.  I need to get some bins to organize the stuff that I am keeping.  I'm craving a trip to Target.

A while ago, I got a call from the person who oversees me, in the "study" that I'm involved in.  She got results from yesterday's blood work and my white blood count is very low. That's no surprise since that was expected on Day 7.  But she wants to have the nurse come by the house to draw blood tomorrow.  That's no fair, since tomorrow was supposed to be free.  She advised me against Target trips. 

Okay, Target can wait. I do like knowing that someone is keeping an eye on my health. 

Being in a medical drug study, I have to have blood drawn after each chemo. That's fine if you have a nurse named Augusta, who greets with smiles and hugs and and distracting chatter.  After Round 1,  Augusta came to my house 12 days in a row. 
 
Today I had a different nurse.  That's okay, because Augusta warned me that she couldn't be there.  But my new nurse seemed... well, new. Of course she was a trained nurse, but I had to show her which table we use and where the sink was and where the box is that holds the materials needed for the study.  I had to introduce her to my veins and she did not compliment them, like other nurses.  She studied my veins way too long and that got me worried.  And she didn't say "Okay, take a deep breath..."  like Augusta does.  Of course I can do that without prompting, so I did.  And I also said, "Ouch!"  I have never said "Ouch" to Augusta.  It was the first time it actually hurt and I felt like a little kid, which made me feel so very sad for all the young kids who are dealing with cancer and needles and procedures and hurting.  And that thought makes me feel sad for the parents of those young children...

But, at least I don't have to do the 12 day thing.  Only 4 visits after each treatment now.  I really can be a big girl about this. 

I need to feel useful, so I've been using my "energy days" to clear stuff out.  It's not easy, because I'm a hoarder with a purpose. I have a lot of junk, but I use it. In my work with Senior folks and kids, I use tons of theme related props. It's the silly stuff that I cart to my groups, that helps me motivate and inspire. I'm not sure I could encourage the same amount of laughter and discussion in my groups, without my junk. 
​
Hats

So, how do I thin out my hat collection, when there are hats I might actually  use for myself, now?  In this photo, there's a super-silly patchwork hat (near the Russian fur hat) that I'm wearing right now.

Scarves

I went through a number of boxes and pulled out my collection of chiffon scarves, that I use to get kids dancing, when I add a little music. Some have acquired holes, so I tossed the bad ones.  That didn't exactly free up tons of closet space.
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Silk Scarves!

Then I ran across the motherlode of retro silk scarves.  I've collected these over the years from my mother-in-law's basement to Goodwill.  I use them for creative movement, too.  But the kids like the "see-thru" chiffon better and they tend to fight over these.  I started to put all 30 in the Goodwill pile.

Wait!

I looked through the whole collection and they were all keepers!  I washed them in the washing machine and they all survived.  I wore this paisley one right on my head and if felt pretty darn comfy. It even felt like I had some silky hair on my neck. For my photo op, I put on my half wig, with bangs this time.  I am spending a ridiculous amount of time messing with my appearance.

Day 4 of chemo was my rough one again.  I didn't write anything yesterday, but I did get myself up and ready for my nurse to draw blood.  She said I'm doing great compared to her other patients... but she also agreed with me that my eyes looked puffy.  It's hard enough when you feel like you're made of lead, but add no hair and puffy eyes and it's hard to be cheery.

So,  before I was dragged down to my most sluggish low of the day, I snapped a pic for Heidi!  I grabbed the earrings off Betty-Lou, the wig stand. I swiped the fur piece and glasses from the dress-up box. (Yes, I have one) And my photo op for Heidi, gave me a laugh and a lift... before hitting the couch! 

Well, I sort of do, because who doesn't like a boost of energy?  But my 3 day meds for anti-nausea have steroids and the meds are messing with my sleep!  The first night after Chemo #2, I was awake at 3 and up at 4, watching a 1930's Sonja Henie movie. I thought her skating moves would lull me to sleep, but no.

So yesterday, I did fine with a few hours of sleep because my steroids were keeping me going.  (Or am I just imagining this?)  After dinner, I wanted to go to bed early and get caught up, but Jerry Lewis was on TCM and he was going from Buck-toothed Goof-ball  to Obnoxious Suave Guy in  "The Absent Minded Professor."  This movie used to crack me up as a kid and I was glued until after 10.  I was amused, but I was also determined to figure out who the "suave guy" reminded me of.  It finally dawned on me that there was a little Donald Trump going on. I'm serious, it was an odd thing to watch! 

So by the time I crawled in bed, I was wound up by Jerry.  I did take the sleep med, my doc gave me, but still had patchy sleep.  Awake an hour, asleep an hour...

I woke, ready to do a little weeding, then swimming and then I soaked in the tub like a diva.  I am wearing a bandana today and no make-up.  I feel fine, but I won't be answering my door! 

in preparation for my second round of chemo, Don once again picked a fun shirt. It's his way of making the atmosphere cheerier. Last time he chose a southwestern tee that for some reason makes me laugh and this time he announced he was wearing his hula shirt from Goodwill. (Look closely at the bottom half) 

But by the time we made it into the chemo room, we were glad we'd left our ukuleles at home.  The patients around me were not having a good time.  One woman was having a bad reaction and was being moved to a hospital room. Others were sleeping. We had to keep it quiet and save the partying for home. We did quietly fill out a Mad-Lib page with "Chemo Room" themed words.  Thought about leaving the sheet for the nurses to enjoy. But they were busy and might not have appreciated it.

Surprise Photo

Don left to get us some snacks and when he returned he had to snap this photo to show me just what I looked like. I had no idea I looked that crazy.  But it was cold and I had to cover with that shawl or skirt or whatever it is!  

We were only there 4 hours today... only 2 hours were for chemo. Once again, I left feeling relieved that I'd had no issues or discomfort like so many of the others. I wish I could have shared some of my luck. I so hope my luck continues. 

Even as a kid I was comfortable entertaining myself with my own silly projects and activities.  I still like my alone time, going from one project to the next. I'm more introvert than extrovert, even if I throw a lot of personal stuff out there, in the blog world.  So I am a perfect candidate for being a hermit, for the next few bald months.  I am not feeling a bit comfortable with my wig or any of my head coverings, to face the world!

​They were mostly excited about me bringing "Little Bear".

Little Bear got rides in the Barbie car and the remote control cars!  And Don and I had a wonderful break with some great grilled burgers and adult conversation as well!

My first hairless day (Saturday) started off pretty well.  My swim lifted my spirits and it was a treat to shower and deal with no shampoo or blowdrying.  But, the time I saved there was lost as I pondered over all my head options.  I wore an orange bandana for an hour, a pretty flowered "cap" for another hour, my "flapper hat" for a while, my half-wig with a tennis hat and finally my wig.

Then we both laughed and I winced, when we realized I haven't met my stylist.  She may just adore my wig and rave about the volume and tell me that no improvements are needed.  So now I have to worry for a week.  By evening I was very grumpy. I was spooked by seeing my eerie bald image in the mirror. I didn't like anything on my head, either. I decided I just wouldn't leave my house or socialize... ever.  Except I have chemo on Tuesday and a shot appointment on Wednesday.  Dang.  I'm going to be one of those people in the waiting room that I've secretly eyed... in their awkward wigs and hats.

Then I got a text at 6 pm, from the mom of these adorable kids. She wanted to know if Don and I would be up for dinner on Sunday?  I wrote back that I wasn't brave enough to face the world...  She said we could do dinner at the house and no hair was required.  (Yikes, I was planning on playing hermit for a while.)  But, I said yes after she sent me a photo of her family. (not this one) I realized, if I have to make my debut in the world (wearing I'm not sure what?) then what better way to do it.  I'm ready for some hugs from these kids!

I've been dreading the bald thing since Dr. P said my kind of chemo meant total hair loss. I wouldn't mind losing my hair so much, if I had young and flawless skin. But, I'm glad I didn't have to go through this when I was young.  I've had a lot of years to help me understand how little my hair really matters.

Plus, I have Don!  He knows all about being bald and I've never heard him complain. He also knows how to make things fun.  He couldn't find a barber's bow tie, so he put on a bandana. ?? We set up the bathroom like a spa, with needed products and tools and some beverages!  My wine was my first since chemo and I sort of needed it.

Days before, I searched the internet for clever ideas of how to make getting rid of hair, fun. I was surprised at how little I found. My daughter, Heidi texted me a photo of a pineapple hairdo that she challenged her dad to attempt.   My son, Scott sent a video of a barber who gave his young son an "old bald man haircut". My friend Martha sent some lovely images of bald women to inspire me.  Family and friends are more creative than the internet.

So we set up shop at about 5:30.  I tossed down a few colorful scarves to wrap my head quickly if the bald look freaked me out.  But I didn't know this was going to be such a long process and that I would have plenty of time to adjust to my head by the time it appeared!

We kept in touch with Heidi by phone, so she could add her suggestions along the way. Don had a whole list of hairdos he wanted to attempt (with our ancient trimming scissors) He started by chopping my bangs to look, like singer, Sia... a dark haired version.

Don seemed to be having so much fun as he snipped and muttered, that I could hardly fret.  "Hmm, this may not be one of my better creations..."  I mean, how often do you get the chance to not worry if someone flubs on your haircut?   

Don got pretty excited about giving me some crooked styles.  Then he buzzed one side and slicked over the top. 

This was his "little boy" haircut.  I felt like Peter Pan and I tried to belt out "I've got to crow..." but I couldn't remember the words. 

These photos are pretty scary, but for some reason I never had the meltdown I expected. It was fun.  After cropping to a G.I. Jane cut, we slathered on some good old shaving cream and used a razor. But,  before going totally bald, Don made sure we at least got to sport twin haircuts for a while. We have photos, but you'll have to ask to see those! 

I woke in the morning and felt my head. I can't lie.  It felt weird and I was prepared to have a glum day.  But the sun was out after days of rain. I went out and swam with my bare head. I let the sun shine on it for a short while, as I relaxed and pondered.  I still hate being bald.  But it's only for a while.

Actually I do like walking, but I've missed running the little route I've taken for 19 years.  As I've eased back into exercise, I've tried walking the route and it's not the same.  I feel restless and I know my brain doesn't kick in the same way It does when I trudge along, at my ridiculously slow running pace. 

So I ran for the first time this morning.   I woke up feeling rested and I knew I needed to get out and try.  Not only would I relieve stress and burn calories, I hoped my clearest thinking would kick in. In the past I've used my little 2.5 mile run, to plan my day,  or make up a stupid song, or solve a problem.  Today, I needed to plan my strategy for attacking my hair.  My slow run actually felt pretty good.  I did some good thinking... and I saw the sun rise in one direction and the full moon in the other! 

I got back to the house and gulped a glass of water with my feet in the pool.  I felt pretty darn proud of myself and my was brain was making up for lost time... going off on wild tangents.  "What should I do with all my hair?  No, a pillow would be gross. Maybe a bird or hamster would like it for nesting? Is chemo hair bad for animals? Should I put it in a little gift bag labeled R.I.P., before tossing?" After I cooled down and my brain stopped being silly, I showered.  Throwing away a nest-sized blob of hair made me happy with my decision.  By evening I will more than ready for my hair shaving event!

But, I'm okay. I expected this a week ago.  It's been sort of worrisome, waiting for the signs, that I've been warned about. So now I need to plan what I'm going to do about it.  How do I take control and approach the hair good-bye?  Don is game to take whatever route I want.  We are going to try to make it fun... somehow.  But we are also fully prepared to be jolted by the emotion of it.  Mostly, I'm ready for the "Good-Bye Hair" deal to be behind me!

It's amazing how looking at a glum face, can be catching.  Especially if you go out of your way to smile at someone and they look back blankly.  So that's why my wig-stand-friend, with her white Styrofoam face, needed to have a new look.  I also   desperately needed to do something a little festive, the day before I planned to get rid of my hair.

Last week I posted this as my Facebook profile pic.  I knew my wig holding friend needed some serious help.  She looked depressed.

Margit to the Rescue

Yesterday, Margit offered to come over with her paints and brushes!

Mixing Paints

First Margit had to mix some paint colors to boost the skin tone of my Styrofoam friend.  It was soothing just watching the colors swirl together.  I need to get out some paints in these months ahead!

Special Jobs

Margit and I each did one green eye, but like a Kindergartner I begged, "Can you fix mine?" Margit also repaired my lip attempts and she added some shading and line work. I added the false eyelashes and I did a very good job drying the paint. (I'm really excited that I won't be needing my hair dryer for a very long time.)

Voila!

Betty Lou looked complete, once we added some bling.  She may not have a smile as large as ours, but she's rockin' the wig.  That's too bad, because we will be fighting over it soon.  

In the past 14 days, I've had blood drawn in the same arm, 14 times. I'm smiling today, because my arm is getting to rest for a week. This morning, I got to take my time  knowing my doorbell would not ring at 9 am.  My nurse doesn't need for me to be showered and chatty.  But having her on the calendar has given me a schedule and a reason to get up. I get up, do some kind of excessive, shower, eat and drink and answer the door.  Being in this study for the drug Nuelasta has given me a "job".  Yep.  I have chores. I have to take my temp twice daily and give some blood.  Does that make me feel important?  No.  But it gets my drug paid for, when insurance won't.  ($25,000 or more for my 4 shots) And it does give me some bonus attention, since my lab work is being carefully reviewed. I'm good with that.

So, I doubt I have any nosy neighbors and there will be nothing to watch for a over a week.  Maybe I should come up with something entertaining, just in case someone's watching!

I've already mentioned a few things before.  I can't believe I'm not allowed to eat sushi for over 12 weeks.  But at least lots of the restrictions are for when my white blood count is really low.  And it's a good thing I'm in this medical study, because I've had my blood drawn daily since chemo and I know when that low period is for me.  When I last met with Dr. P, he knew my white blood cell count "tanked" on the 6th day after chemo. So I know when I am most vulnerable for infection.  And luckily I am taking an injection of Nuelasta after every chemo treatment.  So that is why my white blood cells shot up from 240 to 3,500  after Sunday.  Way above normal.

I'm trying to stay away from Googling too much info.  But I wanted to see what else I should not be doing during that  "tanking" period after my next round. Dr. P says, "No kissing sick babies"  and no "eating unpeeled, raw fruits and veggies" But I needed more info.

So here is what I shouldn't do:

We all know Facebook can be annoying. I've prided myself on being one of those who can enjoy the positive connections and ignore the stupid stuff.  But lately, I've caught myself being a Facebook Whiner.

Messenger!
Sometimes it's annoying that the new "Messenger" deal on FB alerts me to private messages. I don't need that, do I? But I was feeling blah the other day and happy to be notified that my friend Karen, had sent me a cute video to cheer me.  Yay!  I clicked to view the video and suddenly heard a phone ringing. What?  Am I calling or face-timing Karen?  What did I do?  How do I halt this thing?  I haven't even combed my hair, am I going to be face to face with my old college friend? Suddenly I heard her voice. We laughed over my tech ignorance.  We chatted briefly and I still haven't figured out how to avoid this in the future!   

Facebook Postings
It's August and there are a lot of vacation photos out there on FB.  Actually I would much rather see people's vacation pics than political rants, so that's good.  But when I was feeling a little yucky, it was annoying to see pictures of people smiling on beaches and waving on mountains.  And then I remembered.  "Beth, you have posted only a zillion vacation photos on FB."  And every time I've posted a happy or exciting photo, I have not stopped to ponder. "Gee, I hope my photo doesn't cause any of my FB friends who might be grieving, ailing or suffering, to feel frustrated."   That would be called OVER-THINKING-FACEBOOK.  So, I'm going to let those vacay pics I see on FB entertain me!  And I'm going to love the silly animal videos, because they always do. And if I find myself getting close to "O-T-F", then I need to read a book!

So my hair is supposed to fall out pretty soon. They said it would start 10-14 days after chemo starts.  It just sort of hit me the other day, when a friend asked about getting together over the weekend.  I wasn't sure why I felt hesitant. I then realized it was the hair thing that was hanging over me.  I decided to keep my weekend open, in case it starts falling out and I need to deal with some hair drama.  

It felt odd to suddenly realize the next time I see my doctor or my book club or my neighbors or my kids... my hair might be gone.  It sort of put me on edge, so I needed some control. I texted my book club and said I'd be hanging around on Tuesday morning if anyone wanted coffee.

And that's all I did.  I made a pot and people helped themselves... and some surprise muffins arrived. Usually our book club meets at night and we drink wine, not coffee and water.  But we laughed as hard as we do at our night gatherings.  And we took the photo to send to our book club friends who are out of town, or have moved away.  I showed off my wig, (not in photo) but mostly we talked about other things.  And that was the best part.

I'm not the only one complaining about this.  We've been getting cell phone heat alerts, as if we need to be told.  It's frustrating because I feel like being outdoors is one of the healthiest things I can do right now.

But then, I began to imagine if I had to spend chemo months in the winter. I'm not complaining anymore.  We have a lot of windows that bring in sunshine and good cloud views, when it's too hot to be out. (and entertaining tree trim views, too) With the a.c. doing its work, I can curl up like a cat in a beam of sun and let the light do its magic.  And in the early morning before the sun hits the yard, I go out and read or swim or pull weeds.  In the evening, there's usually a breeze and Don can sit outside and watch our crazy squirrel friend climb the palm trees. 

What if I didn't have air-conditioning? What if it were January and the days were short and gray?  Once again, I am feeling lucky.

Movies
​
Everybody tells me to watch funny movies and shows that make me laugh.  That's too bad because I have a long list of movies I'm eager to get caught up on and they're mostly dramas.  But I do love watching classic comedies, like, "Some Like it Hot" and "It Happened One Night".  And I  have lots of favorite old comedy stars who make me laugh.  It's sort of embarrassing to admit that I'm a fan of Jerry Lewis.  I also adore Charlie Chaplin. There's something nice about watching and laughing, without sound.  

Nothing Calm About TV

TV is another thing.  You turn it on and get caught.  If CNN is showing Trump I have to listen a minute, because there's a lot of outrageous humor in the political race these days. But there's nothing calming or stress relieving about it!

The Olympics!  What a great distraction from some of the horrific news we've had this summer and the exhausting politics!  I love watching the "Final 5" US Gymnasts and Michael Phelps win... how many gold medals? But I'll be honest, the cheering and noise and hoopla wears me out.  3 weeks of Olympics?  But it's been fun watching the best parts with Don, who is the most enthused fan ever.  

And when I've had enough, I know I can go read.  Most of all I can relax, knowing that Don is a happy camper, watching all the taped events I don't care about. 

But I've been keeping hydrated to make the job easier for Augusta.  And so far, she's done a smooth and quick job of it!

In truth, Augusta has been a sweet surprise in the midst of all the inconvenience I've been dealing with!  We have talked about her life as a nurse in Nigeria and her 20+ years of nursing in The States. She was delighted when she found out I knew about her favorite food, Fufu.  She couldn't believe I'd feasted on some in a Nigerian restaurant in Houston.  Every day we laugh a little time together.  I rave about her clothes and hair (although she's sometimes in scrubs) And Augusta keeps me boosted, by saying I really don't look like I'm 59.  An interesting way to start each day.

We all know what to expect with the usual junk, like flu. We recognize those symptoms and put up with them and do what we can to speed up the healing.  But my Day 3 of chemo, left me with so many feelings I couldn't even describe. It was unpleasantly clear that something was going on in my body.  Kind folks asked, "How are you feeling?"  I can't believe I actually tried to explain to a few. Then I realized, not everyone expects an answer. Most are just letting me know they're thinking of me. I'm going to try hard, NOT to be like the guy sitting next to me during chemo, who made 20+ cell calls and explained all his ailments to friends and answering machines.

So I'm feeling so much better today on Day 6.  I don't know if my reactions to the next 3 sessions will be the same. But I do know that when I hit my low, I am totally allowed to lounge back in my Foxy Lady Slippers (Thanks, Kristi!) and read, doze or stare.  And I don't have to laugh or chat or anything... but I might have to smile at those feet!

So, no Super Woman today.  I was feeling pretty proud of myself for the first 3 days of chemo. I've gotten up and done some very light exercise and stretches and eaten well with no problems. But today I am indeed feeling like I'm walking in a spacesuit filled with lead.  Don, my cheerleader is giving me more distance because I'm too tired to react to the usual stuff that makes me laugh.

But Don is a clever one.  He knows just what amuses me. This is not the first time I've opened my medicine cabinet to find some cut out staring at me.  A grinning, Martin Short was one of my favorites.  Christopher Walken, is my latest. 

​I got a little of my humor back!