Charles Brown

just a simple blog

Day One – Done.

Day one was going to be at last I knew just Chemo. Radiation had a snag last I knew and something was holding it up but that would change.

I got there early after a rough night with an anxious Lilly I think picking up on Daddy & Mommy being anxious, its Chemo, you hear stories of vomiting and general sucky activities. So the Brown house was quiet, but a little girl kept asking about why the train was so loud when people were sleeping, what the neighbors were doing up and letting me know I was going to be okay and holding my hand.

Sleep didn’t come for me till around 3ish, and the alarm was 6:45 am – so not a ton of sleep leading in, but we got up, we got ready – my breakfast choice of the day via feeding tube: Vanilla (it’s always vanilla lol). We headed out.

Arrived and got all my usual intake goodies, weight, check in on changes, diet/meds/pain/mood/fatigue – every visit, that’s the rundown, then met with the weekly “Doc” visit and got a rundown of what was next in the day, and we waited till my name was called – Daisy and Lilly hit the cafe determined to wait until I was done, but Mondays are always my long day, today was nearly 8 hours in total.

So got all my paperwork signed, went through another survey, blood draw, and vein finding (first poke, go hydration!) and then we warmed up the veins and started the first hour, which is the lifesaver as I’m calling it the pre-meds for handling nausea, reflux, pain, and making you relax the second bag is actually just more long-dose nausea meds to really keep that going after all things, so by the end of it I was in heaven strangely – you have to understand this all started because of pain, and I think the steroids may have been enough to cut the pain and Benedryl made me a wee bit sleepy (I may have dozed off).

Then it was the main event, chemo med #1 – 3 hours (felt like less) and I met a nice older gent next to me named Henry – we chatting, the guy across from me we joked with his home nurse, and I prayed as he had a few seizures, but he made it through and went home smiling and told me Good Luck and have a blessed day – overall a great time chatting with people and having only some mild flashes of nausea which went away almost as quickly as they came.

Then it was the second bag which was 1.5 hours chemo drug number 2. By that point I was a little more functional, still occasional wave of nausea, but was able to write up something for customers to let them know what was up with delays & things going on, but then my lovely RN Sheri came and said: “Hey after this, Radiation wants to have you!”  – So this day was now Chemo + Radiation again.

So we wrapped up, I sort of mapped out a better plan in my head of what was to come each Monday and going to better build out my go-bag for the long days, but next was down the hall, waiting for I think 5 minutes and they brought me back to the radiation waiting room.

When I was called back the room is HUGE. 3 nurses got me prepped and had me lay down and they got me positioned, and had me have my arms over my head, asked me to remain still, they’d be out of the room, and the machine whirred to life and did its thing – now for me it was supposed to be 30 minutes – Dry Run -> Production. However it really didn’t feel that way, but then again I may have fallen asleep lol – but they came in over the speaker saying “You’re doing great, keep staying as still as you are, we’ll get you out of here soon” then after a few spins of the machine around me, doors open, lights came on and a nurse tells me “I’m going to give you your tattoos now.” she put on some ink, then a tiny pinch, another, and one more – 3 dots are now on my skin for life! 

Now you have to remember every ounce of this is new to me, some in my head I’ve mapped this out of the stages and I figured “Okay they finalized the map in the dry run, now with the tat’s I’m ready for the big show” so I asked “So now radiation?” they said “Nope, you’re done for the day, go home and rest.” That was done. I was finished!

So on the way home, we stopped by and got the anti-nausea meds, both Chemo & Radiation teams said “I know they told you only as needed, you need them, take them before bed.” and I must say strangely? It helps feeding on the tube. My stomach doesn’t get upset anymore, I was able to do my evening feeding and not feel like I was going to throw up! So win.

Next, I hit the mailbox hoping for a check or two that are a week or two late, but no such luck, but some boxes arrived and my Instagram request was granted – I was gifted a Nintendo Switch! You are all amazing, I’ve also had others offer money, anything I want, got a gift card to Amazon too – just insanely awesome outpouring of love & support to me and my entire family, it’s just flipping awesome.

Now while the nerd in me said “Oooo set it up” I didn’t, most I did was put in on the charger and then I passed out. Daisy and Lilly stayed at her parents for the night so I could not have to worry, try to take care of them, and let me rest – I did, only been up about 3 hours now and going through over 1k in emails, maybe 4 tickets, looking at a performance issue on a server, and ate. Sleep will come again soon!

Today I do my next treatment of radiation – so the journey continues, and every day my prayer is the entire team’s hands are guided by God and I’m expecting amazing miracles!

Thanks for reading and thanks for support & prayers!   

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