Blinded by the Light

 It was the craziest thing today. Those of you in the northeast know what I am talking about.

The smoke from the Canadian wildfires has drifted downward and now we’re covered and in a heatwave.

Early this afternoon it wasn’t bad.

But hours later, my daughter needed a ride to work and I was like, ‘Sure, I feel good.’ And I stepped outside, you can smell the plastic and burning smell; it was beyond hazy and hot. 99 to be exact.

I drove over to get her and I was fine. However, after we got to the main road I thought something was wrong with my brain.

Suddenly I was thrust into a wasteland, a post apocalypse wasteland. It was surreal.

The sky was white, not blue, white. The sun was shining oddly like a winter sun in the snow and reflecting off the smoke. The roads looked white.

Hazy, white.

I was in an overexposed world. Had I had time to stop I would have gotten sunglasses.

It played eye tricks on me to the point I worried that something was wrong with my brain.

I was like, “Roni, is this me or it is like an optical illusion out here.”

“It’s not you.”

“Whew.”

However, when I took the side streets, the ones treelined with black top things got better. They keep going on about air quality but no one tells you how this is like post nuclear war and plays havoc on your retina.

I’ll not be repeating the driving tomorrow. Not without really good sunglasses.

So why did I leave the house in a heatwave with poor air quality? I felt good, really good today. I wanted a sub. I just wished I would have thought about the hot ham on there. Like bourbon, it burned my throat. I did manage to eat half of a half. Hey, it’s eating.

My grandson wanted homemade spaghetti and meatballs and I managed to dip bread in the sauce and nibble all day.

One day at a time for me.

Here’s hoping tomorrow is like today.

I still have church work to do. I should do it tonight because I feel ‘up’, but I am going to think positive that tomorrow I can get it done.

One thing I do need to do is adjust my own schedule to match up with my new biological schedule.

I’m a night owl, but the last couple months have slowly taken that away and have me up super early and tired early as well. I am not used to writing in the morning, but I have to start. And I have to listen to my body.

Tired?

Go to bed, if it is a reasonable bed time.

Trying to get Normal

 I miss drinking.

It wasn’t just the taste of sipping bourbon, I never got drunk, I just enjoyed it. It was part of my lifestyle as a writer. Sitting at night, sipping a drink. Doing a shot when I crossed a word count threshold. 

It was a running joke in my family.

Not that I don’t have permission to sip an occasional libation from my doctor, I do. But the one thing I loved now tastes horrible.

Metallic and peppery. Even in the tiniest of sips.

I am a salty savory person, but as of lately, sugary gets rid of the nausea.

Speaking of which, someone commented mints. I tried one today after eating a half muffin at work, to hopefully feign off sickness … it worked.

I like to write these blogs at the same time every night, it gives me a sense of how I am feeling and progressing each day.

Thank you. I got some fabulous gifts in the mail from Jamie and Karen. Jaime sent beautiful scarves and inspirational gifts, a beautiful breast cancer bracelet. Karen sent me what felt like an eight-pound box filled with assorted mints and ChapStick! Wait, maybe it was her that said about the mints.

Anyhow the odd gift or rather odd timing of a Karen gift was the multiple mini packs of Kleenex. I picked them up at the Amazon hub around one in the afternoon. Two hours later my nose is feeling weird. Strange pulling pains, and  then it started to run (Sorry for the TMI). I’m not sick. But that twingy pain. I tried to get a good look in the mirror (Nose and mouth sores are common on this treatment) And lo and behold, my nose is running because I lost a lot of my nose hairs. They have thinned out. I think I have some left, but my nostrils look awfully bare. WTH? I thought the hair on my head would go first. I now have this pack of Kleenex in my pocket.

The true test of odd hair loss will be if those eight hairs on my right leg stop growing. Yeah, you read that right. Menopause gifted me with the ability to not have to shave every day.

Today was a good day, physically and emotionally. I got up, thought, ‘wow, I feel actually pretty good’, I had a little cottage cheese and with my pack o crackers and orange juice I went to work. A coworker made homemade blueberry muffins and I had half there and half when I got home. I also had a whole sandwich a couple hours later, but I took my time eating it. I cut it in fours and nibbled over the course of a half hour or so.

Tonight might be a different tale but I really hope this is a sign I am turning a corner into feel better days ahead before next treatment.

Short Update

 

I’m still learning.

A woman in a group I am in posted to be careful of feeding the nausea. It’s a vicious cycle.

Which, thinking about it, makes sense.

My stomach gets empty, I get a twinge of nausea with the hunger, so like I did with morning sickness, I eat.

Only it doesn’t help, it makes it worse.

I am going to try always nibbling on something. Anything. I need to eat. I’ve been nibbling on Ritz crackers this evening with flat coke.

Yesterday was a good day, except you know, after I ate, then I was sick for a bit. Even with the smallest amount of food.

Today I felt really great. I mean almost myself.

Then I had a very small lunch. And again, it hit me. I have been charting all my symptoms, so next infusion I know what to do and know what’s coming.

Is that possible?

According to people in the support group, things subside by day 10. I’m on day 8. Again, three bad days isn’t bad, I shouldn’t complain, but I am.

Hopefully tomorrow the ‘I feel good’ will last even longer. Mentally, I am still strong. I tell myself that what I am feeling is because the treatment is kicking ass. God’s got this.

I don't think it will be long before my hair goes or really thins out. It's acting very weird and looks odd.

Sorry for the short blog, but wanted to update you.

Maybe someone can explain this daylight savings time law they passed. What does that mean?

Ug ... When You're sick, You're sick

It finally got me down.

Physically I mean.

Sunday morning, I got up. I was fine, it just takes me an hour to feel motivated. I went to work at the church. Went to Starbucks, did my Walmart Grocery order and was fine, I wasn’t hungry, I did force some soup, then I took a nap.

That evening about 7 pm, something was off. Sniffing alcohol wipes didn’t help and I wasn’t feeling well enough to drive to get a frozen coke. Which by the way really do help me.

Around 9ish, I am at my computer and a wave of nausea hit me like I hadn’t had yet.

Next thing I know I am in the bathroom, sitting on a little pink stepping stool and embracing the porcelain throne as if it was a long lost friend.

I felt so sick. I didn’t want to take the Compazine because it makes me tired, I have this fear of vomiting in my sleep. So I held off. I had one Zofran and took it around 11. It worked. Didn’t make me tired. I still wasn’t very hungry, but I ate some soup.

They called in a prescription for me.

How do I feel now twenty-four hours later. Good. Much better. Even different.

A friend asked me if I could feel the chemo in my body. After a brief pause, I answered yes. Because there’s a feeling, an emptiness, almost hollow feeling, a vulnerability, that courses through your veins. It takes strength from you but you know that strength is working elsewhere in the body.

A mixture of pre-stage jitters and hunger.

Sort of like the body is short staffed at a restaurant because all the really strong parts are working elsewhere.

It’s only been a week and I am still figuring this out. Again, hating to beat a dead horse, that CT with oral contrast the day before my first infusion didn’t help.

I am glad I was able to work all week, that I pushed through.

I really, really hope I reached a turning point. It’s horrible knowing you feel good and waiting for the shoe to drop.  It’s coming. It’s coming. It’s here, no matter how mentally strong I was, it caught me.

But as I told my son, if it was the worst day of the cycle, I did pretty darned good.

I’m learning what to do. It’s all new.

I just know I have to take it one step at a time. One day at a time.

Anyone watch the new Little House on the Prairie yet? I’m thinking of watching that. Also, if you comment, no need to sign in, just put your name or initials in the comments unless you want to remain anonymous.

Tired but pushing through

I’m not going to complain or say it was a bad day, because I am sure others in my position on treatment feel far worse.

A slight twinge of nausea here and there. Nothing sniffing alcohol wipes doesn’t help. I’m staying hydrated but I am not getting the small meals thing. I understand why I have to do it, but I am doing it wrong. I don’t eat a lot but sure enough two hours after eating I am tired. Like since yesterday. Bam, body tired. If anyone has ideas for small meals, let me know!

Today I felt fine, went to Trader Joe’s made lunch and two hours later .. tired. I took a nap. Got up and still felt tired. I finished all my church work and uploaded it, wrote in my new book, emptied the dishwasher, did my Duolingo, but the lack of energy is making me feel lazy.

Of course, I haven’t slept through the night since Saturday a week ago.

Plus, I didn’t get my Starbucks today either.

Or, well, you know, it could be the chemo.

I think before I post this, I’ll step outside and walk a little to see if that helps.

It’s 9:45 and I haven’t had dinner, I will though.

Hopefully, I’ll have more energy tomorrow.

Sorry for the short blog, I’m just drained.

**Took a ten minute walk, got some fresh air, feel a little better.

** Edit – It’s now been an hour after my walk, and a cup of Earl Gray later and  feel good, energized.

Trudging On Day 3

 

Here I am writing his from the car, I sent my daughter into the store for me. (Important to note that the time I and writing this and posting are probably hours apart) 

 After another restless night, getting up every two hours for a half hour, feeling fine but unable to sleep. I woke up today still feeling fine but with a feeling of nervous energy. The nurse called to check on me and I told her about the sleepless nights and nervous weird feeling and she told me it was probably from the steroids they gave me. They last three days.

I got a bunch of wig stands and Violet played dress up with some of the wigs, good
and bad and it was almost unfair how freaking good she looked in two of them.

Then I realized why they said eat small meals. I made me and Violet lunch. Jersey Mikes subs and heated up leftover Congee. If you’ve never had it it’s fabulous and the Asian community loves to make it for people under the weather. Their chicken soup. Maybe I shouldn’t have put that hot pepper relish on my sandwich. I made the mistake of being stuffed.

About 5:30 I got hit with a wave of heartburn then suddenly tired. I took a two hour nap!

Physically no sickness yet. Just body exhaustion. Hence why I sent my daughter into the store while I sip on a frozen Coke. I think the steroid is wearing off. But I’m feeling more energy as I write this or perhaps it’s the frozen coke.

Gonna still try to plow through this. But nap as needed and get up and go so I don’t become a slave to my own couch. Filling you in so you know and this helps me track what’s going on with me so I can plan things on my ‘good’ days.

Day Two

 They call it day 2, Day 1 being the day of treatment.  I thought I would share a little chart.

Today I felt good. I let my body tell me if I was going to work or not at the church. I didn’t set an alarm, I was up pretty late, trying to get through Project Hail Mary and sure enough I got up. I had my one cup of coffee allowed during the day and a glass of water.

I’m supposed to drink 64 ounces of non-caffeinated beverages a day. Hey, if that keeps me feeling good, I’ll suffer through that much liquid.

This evening I had some watermelon and it was so refreshing. If anyone has not-too-sweet hydration ideas, please let me know.

As the day progressed I felt better and better. It was nice after two days of pain, horrible pain with that lymph node for it finally to subside.

And yeah, those three days of soup and light sandwiches .. done. I’m starving.

But I have that feeling the shoe is gonna drop.

I’m ready. I have that chart lol. Not that I’ll follow it.

I know it’s silly being worried about work, but I want to work. I am hoping I don’t have to miss any work, but if have a backup if I do.

So, I can’t express enough how incredibly grateful I am for the support gifts that arrived. My friend Katie, who was so instrumental in my getting help, sent me boxes of stuff. 

If you can’t see by the picture, there are tons of comfy socks, caps and beanies, a hot comb, blanket, and wigs, one of them is spectacularly nice. I actually ordered a set of wig stands from Amazon. She had them all in nice boxes, I want to let them hang out and I’ll play with them, give them names and then do a fashion slide show.

Yesterday in the waiting room, I watched women walk in. I really didn’t know what to take with me except for a drink, and figured I’ll figure it out. But every woman that walked in had this big bag, they were all the same size, shape, but different colors. To annoy my daughter, I would whisper, “She has a big bag. Look, another big bag.”

“Yes, mom, I know.” And Allie frantically searched Amazon.

“Another big bag.”

“Yes, Mom, I know. I see.”

“You don’t think they’re internally making fun of me for having a Dollar Tree plastic bag.”

“We’ll get you a big bag like these women.”

And BAM …

Today a box arrives, my friend and longtime reader Marcella, made me a blanket, (Made with love and prayers) and what does she have it in? A big bag! Same size and shape! I was so excited.

It will hold the blanket of the day, socks, bag of chips from Canada, a sandwich, my reiki bag (Also a gift) and drink.

I know, I know it’s a treatment blanket, but I used it when I took a nap today!

I will use each blanket, alternating them each treatment. I am so grateful.

Now to have some protein. Thank God I finally finished Project Hail Mary. It took me Four Days but I pushed through. I needed to see why everyone loved it. I haven’t figured that out yet.