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.

day 11 post AC - the shed begins

Well..I knew it was coming.

I've read about it countless times and knew that it was ticking down.

Today I've had a burning sensation in 1 area of my scalp.. consistent tingling..which might be the clarion call of dying hair follicles on my head.

What was most surprising and should not have been was rhe shed of the pubic hair whilst  i was showering just now.

I had a hint that this was coming tho 

Why? My period has come , reminiscent of my 12 year old self and in getting ready for the shower before bed, there it was hairs...on the pad. Gross..yack.

But the snowfall in the shower still surprised me. Like wow..this is really happening.

I'm going to lose my hair.

Cold capping is delaying the inevitable. But the shed from the pubes have begun..I guess I have to look to my pits next.

I'm mentally preparing to buzz my hair tho. Cut my locks. Bless them and put them away in a zip lock bag. And keep one foot stepping in front the next 

Every single cell inside my body

Every single cell is happy and well.

Next DD AC is this Friday. Oh joy. As I told Angela,  the feeling these sessions give me are reminiscent of going to chemistry lessons on a Saturday. I know it's good for me, but it doesn't mean I won't dread toiling away for 4 hours and then doing homework to mitigate the side effects for 5 days.

Sigh.

But still we press on.

I'm tired

Of crying every day

I'm tired of crying every day

I am tired, of crying every day 😢

Every single cell inside my body...

oooh we full of side effects this weekend

I am in tears

And not my emotional piscean tears

No..I'm in abject pain.

Since 7am this morning I've had steadily increasing bone pain in both of my hips spanning across my back.

It is now 10pm

All day. Unrelenting, consistent, depressive hip pain. I'm hobbling, trying not to walk other than go to the bathroom. I'd LOVE to take a shower now before I go to bed.

But the pain. This is obscene.

I've drank ginger tea. Chewed on grated ginger and have taken a claritin. I hope I can get some ease at some point.

Every single cell inside my body

Every single cell is happy and well.

new side effect unlocked?

Cataloguing this 

For 2 hours now my chest has been tight and hurting.

It's a lot of pain

And I'm scared.

and now my cornerstone is missing...sigh

My bestie Dwayne is angry with me.

Correction. He's pissed.

Not sure if we will come back from this.

All for a decision I made that he did not like. The burden of this car may be such that the candle costing more than the funeral.

For me the decision was to avoid a repeat of the car being towed as it was last Sunday night. Once we recouped it on Monday after much error (mine mainly forgetting the keys and all that crap)he gave 4 sets of advice:

1. Put the car back in the handicap parking spot immediately.

2. Call the number on the yellow paper

3. Get evidence that the licence plate is exempt to ensure that it doesn't get towed again

4. Put the magnetic decal on to de-commercialise the vehicle so it doesn't get towed again (order was in but had to wait 2 says for it to arrive)

To avoid a repeat tow that same night, I wanted to get 2 and 3 done before doing 1. As I didn't want to be blamed for not following advice. 4 came through courtesy of Amazon 2 days later.

I fear this was a gauntlet I was never intended to pass. Especially as the condo office explicitly told me upon return ...park in the yellow spot.

So now I'm gripped by anxiety of having this tow happen again and the inconvenience and expense of it being a burden. 

So..i parked in the yellow spot, between two cars until 4 showed up as I couldn't get 2 and 3 done.

Wrong decision apparently.

Gauntlet failed and in retrospect, I would have failed all options as the margins were very narrow for success. I have to get 2 through 4 done immediately to be able to do 1. 3 is still outstanding and I refuse to have a repeat of what happened on Monday with getting this car out of the tow place in Hollywood.

However I have to box this one up with many of life's disappointments unfortunately.  

Because right now. 

I'm literally fighting for my life.

not teewww bad on the home front

So we are now on day 7 (if we count infusion day as day 1) from my first AC round, and things are not teewww bad on the home front.

I'm still constipated tho 😞 

But I have a few wins to celebrate. Did a session at the gym today! I took the weights right down (30lbs) and did reps of 25 to 30 to still feel the burn. Also did some leg work as well and also had a small work.

Do I feel completely like myself? Nope...because ..I'm constipated.

But do I feel much better? Hell yes.

Cataloguing my side effects, my tongue still feels weird but the tingling in the palms of my hands have resolved. I'm lotioning with coconut oil and my shea butter to keep the skin hydrated and ill prob attempt to retwist my hair on Friday once I give my hair another wet at the roots.

AC chemo is VERY dehydrating so I'm trying to take precautions. Liquid tears, spritzing my hair, cold capping, lotioning morning and nigjt and ofc trying to get in as much as 3L at least 3 days before and 4 days after the AC regimen.

It could be the reason why my only sickly issue has been nausea and ofc we discovered that my typical low sodium diet is the reason why it lasted this long 

So now we will tweak the method and include a salty bone broth maybe 2 or 3 days after infusion day.

Anyways, today I take out my mirena. I mean, they have shut down my ovaries, so the mirena is moot at this point and as this squatter is also minorly powered by progesterone (20%) and the mirena is a progesterone based IUD, I gotta yeet the damn thing.

I want to see if I can keep this guy on as my gyne...maybe get some micro dose testosterone and other micro dose stuff as approved by Dr Carcas (my oncologist).

Anyways..today is another day!

chemo constipation.

After FINALLY becoming regular in the bathroom after YEARS of cultivating a healthy diet, this damned chemo got me constipated.

It's been TWO DAYS!!! 

I'm drinking water, eating fruit, walking (but not a lot).

I'm going to try to see if I can take a hot girl walk with oatmeal and chia and flax seeds to loosen things up.

This can be life!

Oh..the nausea is more or less over. We found the trick for this time..

Salt. The body wanted salt. Sigh.

will I ever escape this nausea?

Ugh.

That's the post.

Yes I'm a little tired but I don't feel funky.

But these random 2 hour bouts of nausea are not sustainable 

a catalogue of symptoms after dose 1 of AC

Nausea nausea nausea.

Thank gawd no vomiting.

Day 1 I was fine, up and about.

Day 2, I thought I was fine. But then a lil end of nausea, my.tongue feels strange, like my taste buds.. I can't explain it and now my palms feel so sensitive.

Energy isn't super low, but I'm probably at 80% but given last night I only slept for 4 hours..I prob have to recoup some of that lost sleep.

I MAAAY go to a pool lime later but let's see how I feel in 3 hours.

Woo what a powerful drug!

Captains log: that Nausea BAABBBYYY

Skrrkksss so let's take it back.

AC blood of Jesus first dose is done and over with. I get a lupron shot while wearing my predator cap and we get the ok to do a hot girl walk from Manny because the steroid is going to keep me UP!!

Predator cap...I don't know if this is gonna work because of the Ant of product that was in my hair but I'm gonna try cool capping today for an hour before gently rinsing my hair with baby shampoo and giving it a gentle retwist. Hopefully none falls out in my hand lol.

Ok so! I'm laying on the sofa and my heart starts to beat ...RAPIDAMENTE. THUMPER style FAST!

So I say, yo Angela, let's give the heart something to catch up to. Time to go to the hot girl walk.

So we walk to central park. Heart is BEATING. Ok I go inside and truncate the route shorter..HEART IS BEATING

Halfway through the route I don't feel my heart trying to escape my chest anymore so Ok we going good. Then the skies open and I feel..GOOD! so I say let's go do some squats and stuff. 

Well that was the shit that had all hell break loose.

I did 12 squats. 

12.

Done

Douze

Cue immediate dizziness, nausea the whole gammet. 

I cannae believe I'm saying this but thank GOD that after I took 10 steps to walk home, there was a police car right in front of us. Angela was gonna book us a freebee. I was like NOPE..PO stat.

He came was worried (apparently his dad too is going through chemo), called the WOO WOO AMBULANCE, who determined I was tachy with a high heart rate. Once they put me in tbe back of tbe truck in the AC...everything came right down, heart rate, blood pressure glucose. 

So I just needed a cool place to rest for 10 minutes. I declined going to West Side as I explained that I was there on Sunday already and went through the whole gamet. PO PO dropped us home and from 7.30pm onwards ti now at 5.30am I have been FIGHTING NAUSEA. ginger chews and the heart bending and constipation given medication. I've been TAKING. 

My body wakes me up on the hour every hour screaming NAUSEA!

heart rate is down tho..and funnily enough 2 things distracted me from the nausea.

1. Doing crossword puzzles in the book I bought

2. Having to lock in and respond to foolishness on a contract with CC+that we are trying to initiate.

My symptoms miraculously VANISHED!

Anyways waiting on this lupron shot to be administered....guy said it feels like a rubber band sting which I think is craaazzzy..its here blinking away green in the night on my belly. Wowser.

On to the next one.

one down, eleven (speaking into being) to go!

So today....was LIFT OFF!

Started the day at 7.30am as we arrived at Baptist for my 8am ultrasound. 

As usual the staff from baptist are AMAAAZING! 

Ultrasound tech was a complete sweetheart. She read through my entire history!  A few laughs, a baby wipe and a Portable deodorant wipe (ps those don't work) later. We were upstairs for day 1.

Not a payment taken or made today!small wins!

Anyways..I don't know what state or frame of mind I'm in but I can tell you..my ass is goofy today. My brain is treating this as a new adventure I'm going on where I get to where a space hat 🤣 

Labs with a blood draw and 15 minutes later, we meet Manny..I hope I have Manny EVERY TIME! THOROUGH, KNOWLEDGEABLE AND MY SPIRIT ANIMAL!! We all even paused for a cause so I can cop 2 tickets for Janet Jackson 40 on Dec 12! 300  BUCKEROOS A POP!

ANYWAYS Prep this morning including condition and wet my hair PLUS wetting the durag I was wearing to keep it damp. Angela did another 2 rounds to SOAK my hair and the on popped the loaner cap (mine arrives tomorrow). its cold...I was concerned that it would be ridiculous..but it feels like when a brisk Scottish breeze blows through your hair. Or it could be that I only think my pain tolerance is low, when in fact it is quite high..who the hell knows. Lol

Anyways. Port in, pre nausea meds, steroid in and then comes the BLOOD of Jesus! For context the tumour that came out of me was ER 90%/PR 20% +, HER -. So ..hormone driven, BRCA gene negative with a KI67 of 70%,..I.e. aggressive. So that action plan is to hit it hard and fast....which is why...blood of Jesus

But I've been goofy all morning, laughing and chatting with manny and everybody. Including Sade who came to see me and met Angela too..I'd say day 1 is going cool.. but at the end of the day, we can only make the day based on how we approach it!

Several pees later including one strawberry red passing, and I'm still here at the infusion centre. I forsee I'll be done by 3. Home by 3.07pm. Hmmm

I should probably ask Manny if I can go for a walk later..esp as I have this steroid in me. Prob sweat out some of this bullshit. Lolol

Anyways...day 1 is almost done..let's see what my hypothesis about hydration and protein does for me...

On to the next one!

t minus lift off tomorrow

Well..with each day it gets real-er and real-er!

Yesterday was chemo education, paxman cool cap fitting and underarm biopsy all at baptist

With a stop at Anna's cafe of course 

Angela and I took the 7 minute drive to Baptist and arrived at 7.45am. I was mixed up with all these phone calls and texts so we were an hour early for our appointment. Not top much to mind because the facility is quite nice and waiting room wasn't too overwhelming.

Chemo education- done!

Paxman cold cap fitting (size L) done!

Interruption with call from plastic surgery office ..done!

We got to see the infusion area where I'll be receiving the meds to make me ALL better and then we took a freebee to Anna's for lunch with a short stop in publix for my sweet reward for handling the day. 

(I did see Angela tearing up a bit in the freebee after shakeitra asked how I was doing).

We were lucky that we were back in the hospital and waiting for my 2pm when they called and said they had a cancellation and can take me immediately! Yay me! 

After being PROPER drugged up on Lidocaine by tbe doctor doing the biopsy (she hates needles and I hate pain so I think she gave me a double dose), a round of laughs between the 4 of us in the room and all of us looking at the ultrasound thinking...there's no cancer in there, biopsy done, clip placed, area numb as hell.

The privilege of being able to just jump in the car and drive the 7 minutes back home is something Angela was thanking the Lord for bringing Dwayne into my life for.

Jokes on me though! Aaaaasss we buss through the door..I'm like..why is my lip feeling so numb? 15 minutes later. Why is my mouth so dry? Another 10 minutes...BITCH ARE YOU HIGH?

YES INDEED..MY ASS WAS HIGH FROM THE LIDOCAINE! LOL...powered through work but HAD to take a nap.

Woke up to realise I passed my PET scan (but looks like my fibroids may be back  womp womp) and the day ended on a good note...but then surprise surpriiiiisee, dwayne came to visit!

So a couple hours later hanging out on the sofa and I was AAAH SLEEP after the most awkward lower half shower ever!

I think I'm more resolved this morning. This ish is happening whether I like it or not...so just make up your mind and get to it. Who knows..my mind may change by the 3rd round of AC

But for now...it is what it is..get through it. Try to make the best of a shitty situation and keep it moving.

And as odko said...try to ensure you have things to look forward to. For me that would be college HBCU football AND Ms Janet on Dec 12 (I hope those tickets aren't a crazy price!)

Anyways Day before AC first dose! 

At this pt the cold cap may be more pressure than the AC! That ish is TIGHT and uncomfortable!

another day, another battery of tests

Tuesday 18th, 2 days before infusion day

Angela is here, flitting around with some nervous energy whilst trying to be calming. The usual questions about food, sleep etc etc 

Today is chemo education day so I guess this is where we get to ask all our questions, learn what to expect, DOS and don't. I'll also have my financial class plus about 3 tests that they have decided to pack me up with. I guess this will let us know if we are still on the right path for treatment 

I'm hoping I can go for a 30 minute stroll later. I'm tired of lazing and being lazy!

Todays cry baby feature. Naomi from the front office sent me a note and her personal visitors pass so I can use it with uncles  car...yes you heard that right. At this point this man is a better family member than everybody in my family lol.

But yes. I did cry. The note was sweet.

Angela reminded me how Naomi and I started off as bitter enemies which is how she earned the name "spicy"

But between time and my excessive charm...here we are now. Warmth and love exchanging every time.

On to today!

Every single cell inside my body...

6.45am Baptist health

Well..its Monday.  ECHO scheduled for 7.30am at Baptist Health.

And WHYYYYY am i here ar 6.45am? I'm grateful that these ppl sent a car, but the division isn't even open! 

So here I am..sitting, waiting at the hospital in the break room in an empty area just waiting.

Hurry up and wait I guess.

After  this at 11am, PET scan. And you know what? EVERY SINGLE CELL INSIDE MY BODY, EVERY SINGLE CELL IS HAPPY AND WELL 😀

Yesterday,  uncle came through (again - at this point he is the come through man lol) and brought a whole car...a car..to get myself and angela through infusions. I've never come across this level of unending generosity in my life before.

He hares it whenever I tell him thank you, so from now on I'll redirect my appreciation here.

This level of care and consideration is unknown to me and every day I am thankful that Kathrine called in a panic for help for carnival and I am thankful that January Nnyeka was also kind enough to say "he could lime with me and my crew!" 

Imagine if the stars and fates and GOD didn't line all this up! I am beyond awed. I'm beyond grateful. Thank you Jesus for health, love and support.

So we keep trudging along. 1 foot in front the other. Doing what needs to be done. 

1 year!! 1 YEAR to the day. July 21 2027...I'll be NED. Cured. Reconstructed. Battle worn and tested but HERE. Mentally healthy from THIS PTSD and loving life and loving the people around me MORE.

rum pah pah pum -man down! (for today)

Woke up this morning.

Chest -aching

Back -on fire

Mucus -plentiful and not the colour it should be.

Yeah ER time because this is NAWT Sustainable and something is clearly wrong as Dr Allen said that a. Her patients done usually need pain killers post surgery and b at this pt i cant even distinguish the pain between my chest port and this lung/chest/back pain.

Ofc before leaving the house I had to put a load of laundry in, fix Angela's room and start the robot vacuum! Caribbean trauma is real lol.

Anyways, 1 lyft ride later with lyft driver Patrick who picked me up last week,  check in and in 15 minutes I'm in a room being poked and prodded

It's amazing how in 40 years of life I have prob had blood draws maybe 10 times. In the last 2 months I've had about 15 IVs and 6 blood draws,  things that I really really hate.  I'm properly hooked up 

My word, this is an experience. One that I'm not interested in repeating ever. 

Prevention is better than cure. 

a weekend of normality - the final weekend

Last weekend before lift off

Too bad I'm spending it in FREAKING PAIN FROM THIS CHEST PORT

The place hot AF 98 DEGREES!

Dwaynes been an excellent trooper keeping me company. Rolling in with a fabulous, positive attitude and keeping my mood high.

Some food at Anna's Cafe is always a good time 😀 and then ofc picking up my medication for nausea and other things.

It's gonna be a learning experience for us all...bring on the next 4 months! 

this chest port HURTS

Putting this here for prosperity.

This port. MY GAWD 

It is stifling my ability to BREATHE

My lungs hurt to EXPAND.

Sometimes I'm even breathing evenly or deeply.

Why don't they tell people about this?

I've already taken 2 oxys trying to manage this pain. The lumpectomy was nowhere NEAR to this pain.

I'm trying to box breathe but my god..it hurts 😞

"Every single cell in my body is happy and well."

all approved

Got assigned Kayla, a CIGNA care specialist. Thank God. It came at the right time.

Baptist and Dr Carcas -in network

Chemo - approved

Double mastectomy and DIEP - approved

Resources of PT, therapy, 100 days of home help..all approved 

Now to focus on taking the blood of Jesus and Taxol like a trooper.

U/S today showed no impact to lymph node but we know the real test is not even the biopsy but the pathology at surgery.

One foot in front the other.

Today I felt sad, also very sleepy, this OXY PUNCHED ME OUT!!

A little hopeful though. A little Ray of sunshine through my fog

Every single cell inside my body, every single cell is happy and WELL!!

I am so tired of these tests

Ultrasound of axilla in davie

Ultrasound of breast in plantation

Biopsy of axilla in plantation 

ECHO in plantation

PET scan in plantation

Lord how much more. 

I'm already tired and we haven't started

But!!

Every single cell inside my body! Every single cell is happy and well! 

a reminder of love and care

Michelle from RMI.

I would be remiss not to immortalise her in these posts.

David as well.

Islands team has me crying and bawling at the oncologist office.

David -we will cover for you. Get what you need to do done.

Michelle with a care package in front my door. Ninja style, no clue how she even had my address.

Cookies and rolls eaten, soup in the freezer, yet the love and care remains.

oh the terror

I am terrified.

That's it.

That's the post.

I am crying while writing this from sheer terror.

I pray the Lord that my body handles this better than I think.

every single cell inside my body

Every single cell is happy and well!

I'm so glad, every single cell, in my body is happy and well!! 

https://www.facebook.com/share/r/1Eb9A9oM7x/

SING IT!!

SAAAANG IT NNYEKA! 😀 

The way this ditty has me SMILING!

Aug 12 - port goes in and Aug 13 - breaking up with Amin

Well..the port is in!

Had the surgery at Westside hospital and can I tell you! I prefer the outpatient centre! The nurse that I got at Westside is literally the face of an incompetent old Betty. 

First, she was unpleasant. No good morning, no smile, no asking who I was just plopped herself in front of me. Then, when I got up..she was like oh..you're the patient? Yes my little leather skinned, beach blond lady...yes

She also didn't check if the hospital gown was prepped (reader: it was not) AND could not find a vein..in my veins ass hands! I saw her go ask some other guy to find a vein..which he found but it was scraping on my bone! When I said ow..she was like "oh it'll get better", thank god the other guy advocated before I could speak up and said NO if she's crying in pain I'll put another one.

So THREEEE THREEEE jooks later, I had an IV..an IV!!! The anaesthesia team was the bomb tho..can't fault them. Lol.

Anyways...yesterday was FULL of activity, while I was waiting to be checked in, the nurse navigator assigned to me at Westside called to introduce herself. I told her I was downstairs and she came to meet me. Stephanie! Lovely gal. Her husband is Jamaican and chat chat chat. She's promised (and did!) to put me on to resources for financial aid and support as well. THEN!! The new oncologists office wanted to see me that same afternoon!

I told em hey..I am getting my port put in, I won't be done here till about 1pm, do you still want to see me at 3.00pm?? Them...YES!!!

SOOOO...herculean effort, not really by me (I just had to sit and be woozy) but Dwayne. This man will be forever celebrated and immortalised through this blog. He may be an asshole at times..but he is MY 'AT TIMES' ASSHOLE lolol.

As an aside: I really hope we can weather any storm...sigh..that's my homie dude!

Anyways, he came through, helped to get me sorted and dressed and wheeled my ass out. Stopped by the condo to warm his food which he split with me (sweetheart), bring me fruit which he bought for me and give me water. Thank God. By the time he napped for 15 minutes, it was 2.45pm and time to head to the hospital.

The irony eh. Me choosing a condo location with 2 great hospitals because of my elderly parents. Not realising I'd need the damn things lol.

So to Baptist to go to meet the new oncologist 

And can I tell you. Night and day. Blown away impressed by this woman. I felt like I was her ONLY patient. I felt LISTENED to. And I got information in such a comprehensive and shareable manner. Even Dwayne was like, I'm glad you got this lady..and trust..I am too!

So second nurse navigator assigned (Sade), scheduling started and a whirlwind of other things and the day finally came to an end at 6pm!!

The chemo port HURTS..it HURTS. Nnyeka when you read this in how many ever years in the future. TAKE THE DAMN TYLENOL...NO NEED TO MAN UP ABOUT SHIT!!! TAKE THE PAIN MEDS!! Stop being stubborn girl!!

Anyways...today I went to go see my old oncologist. Dr Amin. Man...it felt like going to sangre grande health centre after the experience with Dr Carcas. Appt at 10.30am. Got there at 10.27am. Waited till 12.05pm to see him. WTH AN APPOINTMENT AND A WAITING ROOM OF 30 PPL!! We chatted, he told me I'm BRCA-, I.E. I HAVE NO GENETIC HISTORY..so I either have a unique genetic marker not yet tested, or its from environment (i think it may be the latter...black disinfectant im looking at you) 

Then, I broke up with him lolol. Promised to keep in touch after the four blood of Jesus infusions and hopefully I'll get a scan between blood of Jesus and taxol and kept it pushing. 

For reminiscing, Nnyeka girl you're gonna get 4 blood of jesus (AC-T) and UP TO 12 rounds of taxol. But because every single cell inside  body is happy and well, I'll get to do 8 😀

Now I'm in bed rubbing my feet together, fielding a whopping amount of calls as I have literally SIX tests to do. I am happy I'm 300 shy of my out of pocket. CIGNA gone ahead and pay the rest!!

Tomorrow its another breast ultrasound, Monday is  ECHO and PET and Angela arrives!!! 

Port goes in tomorrow and why is it so hard to transfer care!

Let's get ready to rumble

Pfft yeah right.. I'm still vastly annoyed and terrified that this is happening to me

Anyways. Went to see Dr Allen today..Port goes in tomorrow.. imagine I didn't even know that a chemo Port required surgery. I just thought it was something they stuck on your chest! Ha! My ignorance runs DEEP!

Hospital also called. Gotta be there at 8am at the Main Hospital Entrance. Westside Hospital. This Port will be my lifeline for chemo and I'll be HAPPY when I take the bish out. Alas, let's get it done.

In other news, I'm trying to do cool cap therapy to save my hair ...my 20 years of LOCS! and I would like to transfer my care to Baptist Health.

Why the fuck oh why does it feel like a bunch of gargoyle guarding the castle for me to get a BASIC CONSULT with the oncologist! OMG! I'm literally on hold for 20 minutes trying to make a consultation appointment! WTF IS THIS!!!

Oh they may want you to do the lymph node biopsy first so you want me to add another week or two of waiting while this shit is in my tit. Like come on!!! 

This is FRUSTRATING to the point where imma be like..uncle buzz my hair cuz this is some bullshit. Ppl with life threatening disease should not be having to navigate complex hospital systems! This is BULLSHIT!

WOOSAH..and breathe. Anyways let me get to Kohls to return this amazon order.

and we're off!

I'm arduous celebrating some of my last weekens before chemo begins on Auguat 20th. 

This weekend I went to Cheryl's 60th birthday party , great gatsby style. Michelle, Rose, Dee, Dana all there and looking fine.

Sunday was a day of rest and slowly preparing.. kara and Michelle's friend has told me I need to start journaling this period by hand..I'll get there..but nothing stops the old trusty blogger app!

Preparing suzzi mits, suzzi helmet, mirena removal. What is scaring me the most is that I have been through mental hardship before. But never have I paired that with the physical hardship of what chemo and repeated rounds of surgery sounds like.

All this paired with H1B renewal woes during this strange administration AND fundraising.

Chemo brain, fatigue, all of these things have me SCARED.

This is why I cry. How long will I have to be mentally strong in the face of torture.

I am so grateful for my A team.

Dwayne

Allan

Angela

Steady and strong presence like a heart beat.

I don't know what good things I've done to have these people in my life. But thank GOD.

Especially I thank God for Dwayne..never would I have thought I'd meet such a caring individual who in such a short time has taken on responsibility for my care and well-being

Still I cry

Still..one foot in front the next.

the first hug

Vanessa Cestina Nurse Practitoner at the CVS pharmacy. Where it all started back in March 2026. 

Went today to get a prescription for the flu I'm fighting. 

Was delighted to see her but at the same time, my emotions crumpled as soon as I saw her.

The first hug since my diagnosis...

Vanessa Cestino NP

I bawled. She embraced and rubbed my back the way I wish I had someone doing since July 23.

I dont necessarily feel better but boy do I feel loved 

Kara

Afiya

Vanessa

Dwayne

I remember their names and the way they made me FEEL. Extraordinarily LOVED.

In turn, Vanessa had her own news. Soul crushing.  Sad. And we shared a 2nd hug. The first for me. The second for her.

a new and terrifying chapter. breast cancer

Set the scene.

Post Carnival 2026.still in euphoria, still tired but happy.

I now live in Fort lauderdale but take some extra time at home to deal with a landslide behind my house. 41st birthday comes and goes. Return to fll march 8th.

Cue the drama. Back strain on March 7 took me out for 10 weeks.

While on bed rest, I lose 10 lbs in 4 weeks after drinking some wonder of the world to manage my cholesterol 

Then..end of March..in the shower minding my business..a HUGE LUMP in my right boob

Me? Meh..its my period..let me wait till its over 

April..lump still there.. ok.lets go for my first ever Mammogram and Ultrasound.

Later in the week.. birads 5. 97% chance its cancer

Cue panic, doubt and disbelief. I have 0 family history..WTF is this.

A bout of work travel is lined up in April

June 19 - U/S guided needle biopsy

June 23 -results benign fibroadenoma 

Hooray! Fabulous! Celebrate good times!

Guadeloupe  July 4 to 7

Excision July 13

2nd path comes back..no no no my friend

DCIS, IDC grade 3. Aggressive

WTF!

Life as you know it stop at that point. You now enter a separate world of learning about chemo and the effects, buildings you never new existed which housed oncologist offices and MRI machines

Plastic surgeon consults, Breast surgeon consults, onco consults. 

All while trying to WORK, keep a good face, be positive, be there for friends and family and ofc keep the circle small. 

Cry cry cry. Panic. Calm. A rotation

Research. Cry cry. Panic Calm

Appointment..cry cry. Panic. Calm

Just had my first MRI on July 30th. This is the determining factor. Keeping positive that the treatment plan loosely sketched out is still valid. But understanding things can change on a dime..just like how a benign fibroadenoma can become grade 3 BC , ER/PR+, HER2- that will crash me into medical menopause

 Sigh

Cry cry cry.

For right now. The loose plan is

DMX , reconstruction, 4 months of chemo. 4 years of Hormone suppressants 

A new life in the blink of a lump