Over the Top

 

Hope all of you had a great weekend.

I felt fine, but tired. Not sure why, I have to try to hydrate even more. That has to be it.

Today I saw my PCP, lost some weight close to 8 pounds, but my blood pressure dropped.

I have been doing BP readings in the evening and noticed last week it started to lower.

I have always had high blood pressure, even with medication. When I was in the hospital I was in hypertension crisis.

Every appointment it has been consistently high.

But now it is not. He took me off of one of my medications.

So I will keep an eye on it.

Last week I had an appointment for an MRI again. Another brain one because they wanted to use the one at the cancer center. The ‘good’ machine. Why aren’t they all good? They said they may want to radiate that non cancerous thing in my head which would need to be done within 48 hours of the MRI.

I really don’t want radiation on something non-cancerous. I have read up on it. I canceled it and asked to reschedule in a couple weeks. MRI only. One, I just need to know how a chemo cycle is going to go without all these appointments and having contrast shot into my body. Two, they are doing major construction getting into town so an hour drive is now 90 mins.

They said, “Someone from scheduling will call you back.”

No one did. I went in this afternoon, into the app to check in for my PCP and there were two appointments for Wednesday. One for consultation and the other for MRI. The appointments are 3 hours apart, with the consultation being first. Which means, timeline wise, I have to leave at 9 and won’t get home until after 6. Yeah. No.

I checked my phone for missed messages … nothing.

They just scheduled without checking if the dates were okay. No, no they aren’t. So, they think because I have cancer my entire life is sitting around waiting for them to tell me where to go next?

Now I have to call tomorrow and reschedule.

It just irritates me.

I get it they want to double check what’s in my head, but that entire ordeal a few weeks back was a waste. Why didn’t I just go to the good MRI in the first place.

A part of me feels because I qualified for that special ‘pay for all breast cancer insurance’ that they are just taking advantage of it. Had I had my other insurance, I am pretty sure it wouldn’t have authorized another MRI so close.

Plus, okay, I have another reason.

The night before my first treatment, I woke up in a panic. Total anxiety. I literally had to pray my way back to sleep.

See my father died young. I kept a diary back then.

I am superstitious and had the coincidences and I wanted to cancel the MRI and radiation.

My father was diagnosed with cancer on June 7, 1988. (I was diagnosed on June 2^nd)

My father started treatment on July 6. (I started July 7)

My father had a massive stroke on July 16 from complications from treatment. I thankfully surpassed that nine day mark and my BP has gone down.

They started treatment again on my dad and ten days later, again, adverse reaction to the treatment, my father passed away August 2 1988,

I passed the stroke time line. I just want to pass my father’s timeline. I know things have changed in forty years, but I can recall as I approached my 48^th Birthday, being nervous until I turned 48 and outlived my dad. This is sort of the same thing.

Okay I am done being miserable about it. On a brighter note, Avenger’s Doomsday come out in a few months, the trailer was released. I am a huge Avengers fan.

Countdown is on.

7 treatments until Avengers!

Chasing Normalcy

 

I debated on whether I would write a blog, simply because it would boring.

But I know so many of you care how I am doing.

Yesterday, today really good days. I do believe I have turned the corner and will look at brighter days ahead until, well, next treatment.

I suffered today in a search for normalcy.

Life has been weird, understandably

My friend Terri invited me to go out to lunch and I thought, you know what? Why not. I was feeling good.

I stepped on the scale today and I am down eight pounds since I started treatment. I was bound and determined I was going to eat.

Light food. Tasty.

I got a cocktail. It’s called a painkiller. I didn’t even see what was in it, I ordered it. Wow, was it good and I couldn’t even taste the booze, which is good because every booze I try burns. A 400 calorie drink with pineapple juice, OJ, cream of coconut and rum.

Yeah, awesome. I am going to try to make one at home.

I ordered pot stickers and an Ahi Tuna Salad.

Terri asked, “Should you be eating that Ahi tuna?” And I was like if I can eat it and it tastes good, yes.

Everything popped and tasted so good. Then I realized that everything I had was sweet. The pot stickers had a ginger dipping sauce and the salad had a banana ginger dressing. I ate what I could and filled up fast, but I did have some more when I got home.

Three hours … not sick. Yay me!

So I got my medical marijuana card and excitedly had my ‘consultation’ with the pharmacist and hurriedly went to the medical marijuana store. I didn’t know what to get.

I went in and expected something else. Instead I am greeted with a woman wearing scrubs and stepped into a waiting room that looked like an Urgent Care.

Carpenter’s Music played over the speakers.

Such a feelin's comin' over me. There is wonder in 'most ev'ry thing I see

How eerily surreal.

I thought wow this is really clinical, until I was called to the back to meet with the bud master, or bud tender and this girl looked more of a stoner than my son.

She helped me get some stuff. I still haven’t tried it. No reason, I’m feeling pretty good.

Sorry for the boring blog!

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.

Ah heck, we're off and Running

 

I’m off and running or walking because they didn’t let me move too fast.

Ya know that freaking CT scan did a number on me. The upward position of my arm really hurt and caused it to swell, compression, elevation, nothing worked.

And boy did I complain to the doctor about that procedure. She said since my scan was clean the next one we can do without the drink. Yay.

Back to today, she was explaining everything to me after the exam and pointed to my arm and said, “We expect that to go down when they lymph node swelling does with this.”

It was unpromoted. I didn’t ask. I’ll take it.

Holy Cow in a field of flies …..Was this a long day.

A battle through rush hour to get to the hospital. I check in for bloodwork at 8:36, 9 minutes early. They take me back right on time. Now I know I have to wait for results before I see the doctor and start treatment.

I go back to the doctor 15 minutes early only to find out not all results were in. Okay,

It took another 90 for results because some machine was down.

Finally, back to treatment and they didn’t have comfy chairs so they put me in a bed! What no! My arm. They gave me pillows to prop but I know I have to move.

"Can't I have a chair." I asked.

"We're full, you can wait."

"No."

I got premeds and treatment.

The whole thing was so long because they gave the medication slowly and had 30 min observation intervals. Four hours.

They did serve lunch. Allie got me soup as well.

I was happy to get home. I am planning small meals over the next couple days, they say eat small amounts a lot during the day. That means not skipping breakfast. I am hoping for the best so that I am not flattened by side effects but realistic and strong enough to face them. This blog will help me keep track of when I feel things.

I got my alcohol pads ready to sniff to ease sudden nausea.

I need a video to show you guys the wonderful stuff I have received. Every thing was and is amazing and I started using them.

More tomorrow

Let the chemo begin but first ....

 This blog is a vent.

If you listen closely, you will hear the echoes of me screaming in complete frustration. Another medical test and yet another test no one warned me about.

I’m not talking people I know, I am talking medical professionals.

I had to get a CT scan of my abdomen which completes my body scan.

If you ever have to get a CT of your abdomen with contrast, be forewarned.

No one said anything.

It wasn’t in the details section of my chart.

No mention of ‘get there an hour before your appoint to prep for hell’

Nor did Lynette warn me.

Who is Lynette.

The miserable receptionist that said to me, “You’re having contrast, I’ll get your drinks.”

Wait. What?

“Lemon, Orange or tea flavored,” she asked.

She wasn’t talking coolers.

I chose tea and I’ll never drink McDonald’s Sweet tea or any other sweet tea again.

I knew when she slid open that window she wasn’t there to brighten my day. I knew when I handed her back the information sheet and asked, “I don’t know what this means.” And she replied, “Neither do I.”

Window slam.

I was in trouble.

After she puts the bracelet on me, she brings out two LARGE Styrofoam cups and tells me I have one hour to drink both.

They were huge. A total of forty ounces. When she handed it to me, you would have thought it would be nice for her to say, “Hey by the way in a couple hours, you’re going to have horrible gastrointestinal issues.”

Or.

Even if not Lynette, how about the chick that did my IV. I bitched to her about how bad the drink was.

She could have said something.

Back up. Why did I have to get an IV in my arm when I went through all that to get a port?

Or the CT scan ladies. Who also put that warm weird stuff in my IV.

I was miserable.

It was a miserable day. I have that inflamed and painful lymph node under my arm and holding my arms above my head for fifteen minutes was torturous. For both the lymph node and port side.

No one. No one said a word about the ‘After’.

About ten minutes from home, I started feeling queasy.

I ate a cracker.

Despite the fact I drank a ton of water to flush my system, it still hit me like a ton of bricks.

I thought something was wrong with me, that I was having a bad reaction, so, I did what anyone would do. I Googled and sure enough, thread after thread about it. It’s normal. Some folks were told to take the rest of the day off, some, like me, blindsided.

Finally by seven and after a long nap, I felt better.

It was a scan, a freaking scan. I will take the loud noise of the MRI any day over this.

Dude, why would they schedule something like this the day before Chemo?

When I go in tomorrow and have my doctor’s visit, I am going to tell them about this. And I’ll tell them to let people know it is not a pleasant experience.

I’m pissed because I have Chemo and know my feeling good days will be slim and they took the one day away from me when I was able to feel good and do things.

And didn’t tell me it would suck.

I’m getting ready for tomorrow. I got a large wonton soup for tomorrow and made sandwiches for nibbling and small meals.

It is going to be a long day for the first infusion. They have to monitor me before they send me home.

There was a bright spot to my day. A friend had sent two boxes of stuff for me. I loved it. And I’ll tell you all about it tomorrow. I am going to try to write on my phone while getting treatment. Not sure how that will go.

Thanks for letting me vent.

**UPDATE** just say my scan results. No new cancer in the abdomen or lower region. Another win!

Preparing for the Week

 

Since I don’t work a normal 9-5 job, any time I have to get up early crushes me. Not that I sleep late, but I like to set my own clock rules.

Sunday and Wednesday at church mean that I have to get up early.

Okay two days I can handle. But now, with all these tests, scans and so forth, getting up early because I have to travel into town has become the norm.

I hate it.

It not only adds an extra hour of travel it’s an extra hour earlier I need to get up.

Tomorrow, I have a full body scan at 9:00 am, last one for at least 6 weeks. Yay!

Am I scared? No.

Am I worried that more ‘spots’ will pop up.

Actually no. If they do, they do.

At this point it doesn’t matter because it already  hit my lymph nodes, and with this type of breast cancer, once it does that … boom like shrapnel it’s everywhere. It’s all the same cancer that the treatment will fight. It doesn’t matter here or there, it’s going after it.

Tuesday is my first treatment. 100%  full strength, Extra long. First go.

Am I worried? No.

Am I scared .. yes

What will I face? What is going to happen? Will I have debilitating symptoms like nausea and stuff or will they feel like a minor inconvenience?  I will not know until I undergo the treatment.

One thing I do know is what they told me I can and should not eat during chemo. Number one thing is sushi and raw fish.

Wait. What?

That is the bane of my existence.

So today, Sunday, my daughter took me to my favorite place to eat., a place she works (Thanks discount)

I loaded up on all the things I can’t have during chemo. Oysters, raw fish ….

It was an amazing lunch.

But there it was …

A fun time. A waiter that was clueless. Normalcy. Until it wasn’t. Here’s the video;

Until tomorrow when I really unload it all on you. And by the time I post tomorrow I should know about the scan.

Could I rock this Look?

 

I don’t expect many to read this today or tonight with it being fourth of July. But I thought I’d give an update.

Yesterday, I felt ok. Tad sore with movement. Today I went to get a Starbucks and made the fatal mistake of putting on a bra.

I took it off as soon as I got home. Tomorrow when I work at the church, I’ll shove extra gauze under the strap. I did discover when I changed the bandages that I have a huge bruise on my chest, I would take a picture but that would include my boob and I don’t want to get flagged for granny porn.

It’s about six inches long and four inches wide. I immediately hit doctor google and saw that it was normal to bruise and for it to even spread across the chest.

Other than that I think the stress of everything is making me tired. But I feel good.

I have a scan Monday morning and should be the last scan for 6-8 weeks. Then Tuesday, well we all know what Tuesday is.

As I said at some point, I was reading on the support group for this treatment that many women lose their hair shortly after the first treatment. So of course, I am on the wig journey and I have learned that you get what you pay for.

Two of my Shein wigs (Less than ten bucks each came in) and nothing like the pictures or the reviews! My Jocelyn wig (From, Schitt’s creek) Looks more like Debbie Does Dallas and my Merle (Devil wears Prada style wig) looks like Thelma from Mama’s Family.

The really good wigs are upwards of 400 dollars and some around a grand. My friend Jen said to reach out to the American Cancer society. So Tuesday when I see my oncologist I will get the required prescription for ‘Cranial Prosthesis’. I just want to be ready. I know Michele will come and buzz me but I will have spots. I want to wear different ones and have different personalities.

Another friend who has been there done that with BC, mailed me a box with wigs, caps and scarves, it should be here this week. I am excited. And I promise once I get them all together, I will post pictures of me in these wigs. Including Mama’s Family.

For now, I think I’ll watch some drag queens youtube videos on making a cheap wig look better. If I succeed. I’ll post pictures, if you don’t see pictures, then Mama’s Family Wig was helpless.

EDIT – Epic fail, even tips from the best drag queens can’t help. The only thing that makes this wig look better is a hat.

Vein of my Existence

We’ll call her Mary (Not her real name) She was something out of Mr. Rogers neighborhood. She was my nurse today. I had two. A pre-op/post-op nurse and an operating room nurse.

Mary was a great mixture of Miss Rachel and Mr. Rogers, probably more Miss Rachel.

You know what? I’m gonna call her Miss Rachel. And I mean that with utmost respect. She was kind, upbeat and perfect disposition.

Today went well, usually I write my blogs around midnight, but I am writing this now, because at 9:00 pm, the numbing agent is starting to finally wear off and I can feel the irritation and pull now. I had a good go. They said 4-6 hours, I got ten. Then again, I took a two hour nap.

I had a hard time sleeping last night, as you can guess.

I fell asleep around 330 and was up at 5:30. I wasn’t nervous or filled with anxiety, I think I just wanted to get it over.

I had to drive into the city and be there by nine. My sister came with me

When it was time, I was greeted by Miss Rachel, and not just a friendly hello, she smiled widely and hugged me. She took me and my sister back into another waiting and changing room, asked if I needed help undressing. I said no.

Then to an exam room. Where she did the vitals thing, put an IV line in my arm, then cheerfully explained the procedure. She told me that I would get a local and mild sedation, then said in the up voice. “You’ll be awake but not remember the procedure.”

“Does that mean I won’t be sleeping, I can be talking.”

“Yes, but no worries, you won’t remember what you said.”

UG. No. Immediately thoughts from my writer’s mind took off. Would I talk about Beginnings, Frank and Joe. Good God, I mean, I am always thinking about what I am writing. What if I spew out I am planning of destroying Steubenville, and wake up to FBI staring me down.

Um, no. I’ll pass on the sedation, thanks.

She then said if I want they can give me pain medication.

“Will it make me loopy?”

“Possibly.”

“I’ll pass.”

She seriously looked at me and said, “Don’t be a martyr.”

“Oh, I’m not, I just don’t trust what will come out of my mouth. After about 40 minutes in that room I went to the OR. It was like sci fi, the table moved, this machine above me circles me. They painted me with this blue stuff. The tech complimented that I was the easiest vein to find in his career. Cool.

I was awake during the procedure, not sedated. And I still talked the entire time. I could feel the pressure of the procedure, no pain. They told me to pick my port music. I of course picked my favorite country/Cristian singer. They never heard of him. My OR nurse loved his voice and looked him up. She commented, “Wow he’s attractive.”

“Yeah, he’s hot. I met him,” I told her. “But he’s surprisingly skinny, like borderline crackhead skinny. No offence to anyone in the room that may be a crackhead.”

At that point I felt the doctor pause and she laughed loudly.

Damn filter on me again.

Anyhow it finished, I had more problems with laying on that table for an hour. My back hurt for at least an hour.

Leaving the OR, I took off my blue hat and decided to make my hair look crazy for my sister (Reenactment picture),
but Miss Rachel saw me first, looked horrified and was like oh, you poor thing, Let me help you.

She grabbed my arm to escorted me back to the waiting area where she fed me crackers and Pepsi. She said, “Sit here, when you feel steady, get dressed, but not before you feel steady.”

“Ok.”

“When I walk out of here you’re gonna leave aren’t you?”

I just smiled and thanked her.

Now to relax. I’m gonna kick back on my reclining couch,  I was told that was probably for the best so I don’t roll in my sleep. Binge watch From Season 4 and if I fall asleep, so be it. AC is pumping, I’m set up all cozy with pillows and a blanket.

Growing a Pair

 

It was a good day. I had lunch with my aunt and it was nice to spend that time with her, my daughter came too. It took my mind off of things.

Lots of phone calls from the hospital today.

The Port nurse called with questions and instructions. She seemed rather flighty to me.

My oncologist called to discuss next week’s treatments and said, “How about how great those Echo results were.”

My nurse oncologist navigator called to prep me with information for treatment. Apparently, I am going to be there this first time for HOURS.

And then I got the courage to call Steve. He had reached out to me but I just couldn’t talk to him. It was hard. It was Steve. Those of you who know me know how hard that was. He was also co-writer of my new theme song and said he would happily help record it.

I thought a lot about Ron Brown today, my kids’ father. How close we were and of course, how competitive we were. How he was such a huge creative influence in my life.

Today was the day for saying things out of the blue, I told my daughter, “I am going to live longer than your father.”

To which she replied, “Why are you still competing with Dad?”

“Because he’d want it that way. We always competed.  In everything.”

He was fifteen years older than me. That’s my goal at least!

Anyhow, I went to my son’s show tonight. I didn’t do stand up, I was in the mood to just watch. It was wonderful. Strangers, no social anxiety. A friend I’ve known for decades was there he had no idea what was going on with me and it was so awesome to get a hug that wasn’t sympathetic if that makes sense. Glad to see you sort of thing.

I realized tonight that my social anxiety has to do with facing people with my disease.

Family functions, church.

Speaking of church.

I think cancer removed my filter.

Not that I had much of a filter as it was, but now it’s gone. Almost as if I can’t control what comes out of my mouth. We were at church staff meeting and when asked my thoughts on the new, young Associate pastors’ sermon, it just rolled from my mouth in honesty. She looked at me with daggers and shock. I was being honest. I apologized for being blunt. But it was already said.

Before I could stop myself … I just started ranting.

I don’t like that side of me. Maybe subconsciously I am thinking life’s too short to not be honest.

I’m tired. I hope I can get some rest. 6 am comes early. I did write tonight as well.

Tomorrow … port of de insertion. Am I nervous? Heck yeah. I’ll fill you in.