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 

hot girl walks and gym

So it's been a full week from AC #2 and I'm FINALLY feeling 75%like myself.

I must admit, this one brought me to my knees. 

My stomach burning, tumult, nausea.

The FATIGUE! OMG..if I thought too hard, I'd be asleep.

Doing this and work is a huge energy outlay and I'll look back at this and be like DAMN GIRL YOU WERE A WARRIOR!

Yesterday I had hot girl walk #2 around the compound and that was a shitshow.

Nausea (but I think it's because I overate, I am realising very quickly how little I need to eat but frequently), dizziness, short of breath over a 20 MINUTE WALK IN HOUSE SLIPPERS!

But this morning I was determined to go to the gym.

And that I did! RDLs, lat pull downs ,rows, flysheet, triceps I got it done. I had to cut the workout short tho..the kiwis and beet smoothie angela gave me yesterday worked TOO well 

But I'm happy that now my chemo constipation is apparently cured.

That ish had me running in the house like pops from Friday.  Flung off my shoes and screamed MOOVEEE while I hightailed it to the throne. lmaooo

My only good weekend is coming up, so hoping that I can do something but outdoors is so freaking STORMY!! It's raining DAILY from 2pm and proper buss down thunder and lightning.

Anyways..let me enjoy my one good week before I POISON myself again

PS..my tongue is showing hyperpigmentation and my two thumb nails..womp womp.

it is mega exhausting to suffer

I wish friends and family knew that it is really exhausting

How you feeling today? X 200, this too shall pass x 200, can you eat ? x 100 is not helpful, useful or even welcomed by persons who are unable to help, provide relief or even a moment of joy.

I am suffering. This is the baseline.

No need to ask me how I'm doing. Chances are..I'm suffering or on the way to suffer.

It's exhausting and I'm going to stop responding to people and only do so when I feel like it.

Thankfully Allan, Kwesi, my father have gotten the memo. Want daily updates? Ask the healthy caregiver, not the suffering patient who is trying to balance suffering with working.

You're 5000 miles away...me satisfying your curiosity does absolutely nothing for me besides drain the last bit of mitochondrial energy I have from me and provides me with no relief than other a set of banal follow up questions

You asking me a set of questions,  offering unsolicited advice masked as comfort..but have not even asked for my address to provide a lil care package, food, fruit, NADAAAA, not even a lil DUST etc. So what, amazon only works in trinidad?

Look I fed up

The word is..I am in some phase of suffering

Leave me alone unless you have fun news, care packages or gossip.

looks like I'm being pulled from AC

Dr Carcas called me this morning

Profusely apologetic about the after hours systems not working as it should.

She asked me about my symptoms..I told her tbe usual insane fatigue and nausea..but also the strange happenstance of not inhaling when laying down the evening of infusion.

She asked if I went to the ER.

Ofc. Nope

So she was like listen..this is the second time in 2 infusions that you have had some sort of chest complaint..I cannot in good conscience continue to give you AC. Esp as AC is known to cause heart complications. 

We may have to pivot you to taxol.

So there it is.

2 out of 4 AC complete.

I'll find out if I will be able to do 1 more AC after the taxol at a reduced dose or something. 

There's a fear that if I don't finish the course then it increases the chance of this nonsense coming back. I rather have a completion rate of 75% AC than 50% AC tbh.

But let's see. I see her in 1.5 weeks. I'm STILL stupendously fatigued and moving like molasses. My stomach is still funny and burning and all i want is salty and cheesy eggs and blackened toast. 

Kayla my insurance nurse practitioner said its prob tbe steroid high jacking my stomach lining and encouraged me to eat whatever I felt for and could stomach. God bless her soul. She is one of the angels walking amongst us.

Anyways I'm trying to swim out of these side effects so I can get to work but today seems like another wash.

I AM going to try to go for a hot girl walk today tho. Try to move my limbs and get this chemo constipation outta here.

I also had a good cry this morning. 

I'm tired of feeling tired

I'm sick of feeling sick

Every single cell inside my body...

I really hope I can make round 3 and 4

Well

The battle has begun.

I was cocky and confident after round 1.

Round 2 has brought me to my KNEES.

Nausea day 1..check

The ABSOLUTE CRUSHING FATIGUE DAYS 2 AND 3

PRESENT!

Day 4, I am just being able to swim out of what I can only compare to aesthetic induced fatigue post-surgery but for 48 hours.

I could not speak, form  a comprehensive sentence or thought. Just sleep, wake up, munch something, back to sleep. The plat au jour was burned bread. The thought of anything else would send me spiralling..into sleep.

I have been awake now for the longest I've ever been in the last 2 days....3 hours.

Let's see how long this stretch can go

I can now see why ppl fear rounds 3 and 4.

Because 2 knocks the sails out of them.

How can this get worse???

this udenyca ghetto shit

Every time I leave the infusion centre.  I leave with an $8000 souvenir. 

This box attached to my arm or stomach injects some crap that builds my white blood cells up.

Now..I don't mind the medication.. but the administration!!

OMG. It's a timed injection...and when it's ready, it's like a rubber band sting...from far.

And then you can feel the needle going in and out your arm sometimes like a sewing machine.

Ghetto!!!

It administers from about 5 minutes and then POW..another sting as it retracts and the green light goes from blinking to a solid light

Awful!! One of the worst parts of chemo! 

2 more rounds of THIS SHIT BOY???

AC # 2 come and gone

And trust..

WHILE sitting in the chair,  I knew the side effects would be a supreme shit show.

Why? A tingling in my stomach. Despite sucking down 3.5L of water between 6am and 3pm...and peeing every 15 to 20 minutes..it was a scene.

The stomach. Felt like..irritation..and I knew..nausea gonna be on 1000!

And trust, I just had enough time to receive my ghetto box for the WBC shot.

Call Paxman (more about that in a bit)

And Caribbean Airlines to change my flight to June 

And I was DOWN..MAN DOWN. Ginger tea, the 2 nausea pills, something called cardiotoxicity which I think I have. So sitting upright on the sofa, with what I think are now night sweats (lol)  battling a ROILING stomach and scared to move except to pee.

Then ofc ..at midnight when I finally woke from my 6 pm resting place...Google. cuz I'm like what shit is this. The nausea pills are only preventing me from vomiting but the stomach is still BURNING and roiling..what is going on. Talk to Dwayne (we back on the mend yay!), and I spend some time on Google trying to figure out WHAT I'm feeling and what are remedies.

Google to the rescue and a few clicks later...a semi answer (besides eating plain foods), pepcid AC. The burn is a form of acid reflix? Maybe ? At this point I'm willing to try ANYTHING. 

One chewable later and one 5.5 hour pass out later with more night sweats.

I wake up...do my check in. Stomach? 75% (compared to 10% last night)

Nausea? 5%

Headache- 15% (but I'm used to this with these pills and chemo)

I dared go for a quick shower, coconut oil down, shea and castor oil down my body and I'm back on the sofa..semi laying down with no inhalation issues (cardiotoxicity)

So! Pepcid gets added to the line up BEFORE and after chemo just like claritin

But 2 more of these boy?  On the bright side..I'm halfway there..but this? Absolute bullshit lol

Ok on to paxman and their bullshit 

I get my hair done, angela and I think we figure out the code between the balance of water vs conditioner in the hair and we are all locked in. 

Head..frozen AF.

Make a bathroom trip and BOOM..apparently the clip fails, coolant spilling everywhere, nurse Latoya is plugging the coolant in my cap with her THUMB like mc guyver bullshit. 

They bring in a spare machine thinking at first that it's the machine

Nay nay..its my BRAND NEW PAXMAN BRANDED CAP 

So while it's chaos going on around me.

I call Paxman

This bish on the phone.. not a sorry, not an omg..

She buss the spiel "well you know you rent the machine "

Mam...I asked her. Did I make this cap myself? Who sent me this cap?whose branding is on this cap and is hence responsible for QA?is the machine compatible with other caps? So escalate this because I want compensation because how can you now guarantee the service with my head cooling down rapidly, us having to SWITCH caps and start all over again 

CRAZY! 

ANYWAYS. New cap comes Tuesday.. Hq should also call me on Tuesday

And I hope by then I am BETTTERRRR

But yes..I'm laying down.. keeping my ass quiet.

For the most, I'll prob do some vibration plate for 10 minutes. 

DASSIT

day before AC chemo #2

Well it's Thursday...day before AC #2 

This means

Eye drops in

Water intake up

Protein intake up

Skin MOISTURISED

Mouth wash activated 

Saw my oncologist today and we discussed the possibility of doing 4 Doss Dense taxol over 2 months vs 12 weekly over 12 weeks. That would allow me to finish chemo by end of Nov and potentially have surgery end of December 

Also I can go to Ms Janet worry free 😀

Anyways. No new news. No metastases,  we still funky about these lymphs in my right side but the chemo BETTER deal with that bish.

I like following tammy on fb to see her journey.  Its nice having company but also a preview of the shitshow I'm in for 

Unfortunately no testosterone for me ..womp womp..but this is my life now.

Pills for 10 years 

WOW 

Any AC chemo #2.

Let's get it on.