when you don't look like what you're going through

Finally!!! An outting! I was OUTSIDE!!

I must admit.   It almost didn't happen because boy do I need these naps!

Michelle (Florida not colorado) and I were chit chatting on the phone. Even she said she wasn't confident that I'd come out...because lawd she is a night owl and wanted to go to Macabi at 10pm

AT NIGHT!!!!

but I got a small second wind and said I'd meet her for an hour or two but I gotta be home and in bed by 10pm..cuz mama is tired and chemo destroys the mitochondrial stores.

Anyways..put on a quick dress some flats and made it down to the Wilder (I need to go back there..its awesome!) And its cute outdoor area. Finally got there (because what is Friday night traffic to downtown) and walked in and I could SEE the visible shock from Michelle 

Bear in mind she didn't lay eyes on me since Cheryl's birthday before my first chemo. I've now gone through 3 rounds of one of the harshest regimens and she was like GIRL YOUR HAIR LOOKS THICKER AND LONGER!!

YOUR SKIN LOOKS AMAZING!! WTF!!

Then she said the clincher

"You do NAWT look like what you're going through"

And while there's a sense of relief..there's also an awful truth. There's shame in looking sick. Once we can hide whatever rough patch that we are going through whether it be physical , emotional or mental, there's some measure of still winning - despite literally dying inside. I hope with time we can allow ppl to look sick and know that they are fighting and have the same chances as someone who looks moisturised with thicker and longer hair.

Either way...putting on a good front may not be healthy...but keeping the mind forward focused, result oriented and staying out of the "woah be on to me" bucket is where I need to be...yes..I poison my body on a biweekly basis voluntarily and can hopefully dodge the more serious of tbe long term side effects...but I gotta get my mind right and to LIVE.

Anyways..it was a really nice night out of ki ki-ing and talking shit

And yes..at 10.01pm..I was putting my key in the door. Mama dont play with her rest!!!

officially pulled from AC

Got the word yesterday evening...

I mean..for the most part I suspected as even I decided i wasn't doing the 4th

Nurse Kelly was like 'ill be REALLY surprised if they allow you to do tbe 4th"

Dwayne "I reaaaally don't think it's worth it to do the 4th"

Lennard "I am no doctor but I don't think you should do the 4th"

So yeah Carcas has pulled me from my 4th AC.so I've done 2 full doses and 1 dose at 25% reduction and I am not mad at it at all. Especially after reading up on how some people were hospitalised with heart damage for WEEKSSS after finishing AC chemo.

No thank you. So I'll take my beta blocker for now, practice my box breathing and prepare myself for the next phase.

Dense dose taxol..I'm not gonna lie..I'm kinda nervous about taxol as a dense dose because the side effects are significant neuropathy in hands and feet, hearing loss (??!!!!! Wtf), extreme bone pain, fatigue and of course playing truth or dare with my hair. The only goof good thing is that a. If I have a bad reaction I can switch to an abraxane which has minimal side effects, b.taxol is flexible such that I can take it dose dense or weekly. If dense dose is too hard on me, I can take the weekly.

Given that my body is taking this hard, I'm even considering asking for a dose reduction off the bat for the dense dose (especially as I have the tinnitus since my last AC infusion)

Anyways...bring out the Suzzi pads and let the good times roll. Who knows...if all goes well..but who the hell knows, I could be dome with Chemo in November...wow.

Anyways.lets see.

God is in control and every single cell inside my body.

your girl is tachy(cardiac) AF

First morning post-HOPITAL I am back in my apartment. Yay!!! 

I slept all the way through from 9.30pm to 5am. SOLID. NO NOTES. JUST SNOOZING AND SERENADING.

I mean the automatically inflating bed was cool and all but it was noisy, ppl were coming in all hours to take my blood pressure and it wasn't MY CLEAN BED AND MY CLEAN HOUSE.

Boy, I told dwayne about the cleaning lady with her 1 blue rag and 1 spray bottle cleaning EVERYTHING..that made me want to get up and get H-IMMEDIATELY!!

Anyways..slept..woke up. Felt pretty OK and said alright 👍🏽..hot girl walk time 

Well...just the act of putting on my sneakers!! Heart RACING! I looked up natural methods to slow tachycardia and 1 was box breathing. So..I started my walk at an almost CRAWL to central park. Angela was basically chipping next to me...the walk was so slow. 

Made it to the park, sat my ass down on a bench to rest while angela did 2 laps of the track and then I walked home.

But a. I ain't doing anymore of this AC..this short of breath/panting/heart racing feeling is NOT worth it. 

b. MOVE YOUR BODY. Even if it's a baby walk..get the blood flowing and good stuff circulating. That 3km walk was difficult and slow AF and frustrating (because just 3 weeks ago I was speed roping and skipping like Ali!) But just get over yourself and keep moving.

C. Just be grateful for the lil things. That I could make it to the park in the first place, that I could see the beautiful morning today would shape up to be and I could FEEL that shift in the weather. The company of angela, the steadiness of dwayne and my work colleagues..esp Michelle who keeps sending motivational cards in the mail..(I ❤️ it!!)

Nnyeka girl. Just keep swimming!!!

You're doing your best and that is ENOUGH!

HOPITAL

Well, 3rd AC has done me in.

I had to keep the promise to Dr Carcas that if I felt ANYTHING  I come to the hospital

Well, I felt something YESTERDAY,  ran a battery of tests and was admitted.  Sigh

So after cardio angiogram, 2 echos, 2 ekgs and a bunch of troponin tests  there's no heart attack. No blood clots just a very high , concerning heart rate. 

To the point where I went to pee last night and nurses busted in my room because my heart rate went up to 140. 

Yes the monitoring here is sick lol

Anyways,  I'm here at 10.22 am just waiting waiting waiting

AC 3 at 75%

Well..

What we know with AC...the usual

Yesterday was bad 

So bad I started to feel sick DURING AC...within 15 minutes of infusion..the nausea was DEBILITTATING.

coupled with the nurse not knowing how to do the paxman cap and me having to advocate for me time but STILL cutting it 30 minutes short because I felt so bad...let's see

But the NAUSEA..wow..the nurses had to rush and push some other nausea med in my port to supplement the Dexa and TWO nausea meds that they give me. This 3rd tho..whew child..the DROWSINESS! it derailed my flushing schedule as ofc I could not drink water and get up to pee and was just all around sluggish and do do ish.

I got enough of a second wind to get up and drive home in the POURING rain, removed my clothes, jumped on the sofa and SLEPT.

Took the 8 hour nausea pill. SLEPT

Woke up for 15 minutes. Ate something.  SLEPT

And it's now 10am Saturday. I fell asleep at 3pm on Friday.. 

What I can say tho is my fatigue and nausea from this Saturday is 80% better as compared to last Saturday. So maybe the dose reduction is the REAL ticket + that extra nausea med that made me feel sleepy.

I dunno but if I can get past this weekend a little unscathed..I'll take it!

all systems go..more AC..AGAIN

Updating this from my sofa because baby girl is TIRED.

Went to get my blood drawn today and saw Dr Carcas

Things accomplished today

1. Being my old foolish self with the nurse who takes my blood. We have a thing going where I rate her "chook" and the pain level. First week was 9/10, second week was 5/10...she told me she wanted redemption this week...she scored 9/10again. While we were cackling hooting and hollering. Angela said she heard us laughing from the waiting room

Score!

2..Dr carcas has some cool shoes...she says she has about 6 of tbe same pair in diff colours.  They are cuh-yute! I'll try to sneak a picture next time.

3. We are reducing the dose of the A of the C by 25%. So instead of 122mg, I'll be getting 90mg. I had to promise and swear that if I had ANYTHING hear related to go to the ER and she will switch me out to taxol. She is still uncomfortable with proceeding on AC due to long term potential heart issues but I have to swear to go to the ER first then call from there to report any issues.

4. She's OK with vaginal estrogen. She said I can't use it on my head to help with brain fog  (we laughed at that)..she said my best bet is to EXERCISE and LIFT heavy.. let's see how this shit goes.

5. She's reduced my steroid push by 12.5% . From 9mg to 8mg.

6. It's infusion 3 and the cold capping seems to be doing what it supposed to...crossing fingers tho cuz my scalp in certain parts..is TENDER!!

7. She scheduled a follow up ultrasound for me and I'll do an MRI before going off to surgery

8. She did a prescription for me for Prevident toothpaste. A LOT of ppl seem to be having dental issues on chemo . THATS NAWT GONNA BE ME!!

9..oh! Apparently my liver is PRISTINE (her words exeactly). Angela's drive to shove beets down my throat to cure my slight anemia has worked as i am bang on "12" which is in-range..the lower end..but still in range.

All in all let's see how this shit goes! I am NAWT looking fwd to dose 3 but let's see. If I handle it well she wants me to do dose 4...

But..meh. tbh I'd rather flipping not. I STILL have shortness of breath from dose 2. Dose 2 is STILL Lingering in my body!

Angela and I stopped at the library today and got a Hella lotta books...so we are stocked up and ready to go!

Ok..let me take a rest..I am TYAD! 

finally..feeling better

Dose 2 really was a mother effer. 

It took me out for almost 8 days. I started to feel good last Friday and finally like myself on Sunday.

It's now Tuesday and I'm doing everything in my power to

Eat enough protein

Rebuild my gut microbiome

Exercise (gym and central park)

Be productive at work

Have a social life?

Do self care

ALL BEFORE IT GOES TO SHIT AGAIN ON FRIDAY

Going to chemotherapy and radiation is the biggest mental fucks and strongest thing I've ever done. Ppl go to the hospital to get sick, I walk into the infusion centre knowing I feel incredible at that moment and will be fucked up for 3 to 5 days.

Incroyable 

I had a good cry yesterday..and frankly I was overdue. It was more or less spurred by a lady who was a HH before, did a DMX and decided to go flat. She recorded her reaction...and boy...was it heartbreaking 

I know this isn't my journey..and I'm not starting from HH (Can barely make a C cup), but the havoc that this shit wreaks on ppl is crazzzzzy. The fact that your chest MAY be completely numb for the rest of your life? DOUBLY CRAZY.

Anyways..we keep on pushing. 

Gym tomorrow, hot girl walk with jump rope on Thursday. 

Thursday I see carcas where I'm gonna try negotiate a dose reduction while listing out my side effects this rounds including tinnitus, shortness of breath, the inability to inhale (which she knows about) and ofc the extreme nausea, night sweats and now parts of my tongue is black from the hyperpigmentation...

Yay..oh joy

Anyways...my hair is still on my head. So big mercies..and so too my body...small mercies.

Every single cell inside my body