MY HiCy update (not a sales pitch)!

RedPenguins · 07-05-2008, 02:04 AM

Hi everyone,

Several of you have asked if I could update....and I can....so I will. However, I'm putting this on a separate thread, as I don't want this to become a sales pitch for HiCy, as that is not what it is!! My only point in sharing is to do exactly that - share the information I have - in what my personal experience has been - not to sell anyone on doing any particular treatment.

Okay, now that that is said, you all can feel free to discuss HiCy any way you would like on another thread.

So, it is now early Saturday morning, I guess. Well, 2:30am here in Baltimore, tho my laptop still touts Los Angeles time of 11:30pm

.

On Thursday, I entered the hospital and they placed the central line. The procedure itself was cake. Yeah, I know how people say things like that all the time and I'm sure they are BS'ing it. Well, being the world's biggest baby and hater of pain, I will tell you - the procedure really was nothing - I believe they put me into a state called Twilight. I would *swear* that I was awake the entire time yapping, but the docs told me that I did sleep a little. All I remember was talking and asking them questions. They told me the procedure took less than 30 minutes. Pretty neat when you think about them inserting two tubes into my chest and directly into my heart.

Okay, then they wheeled me directly to my room. Orginally I thought they would bring me to recovery - which is where my friend had been waiting. Ooopsie. (recovery was on the other side of the building - but she eventually found me.) Anyhow, worst part of the procedure was the waiting for it to happen. We sat for a few hours....in the cold (hospitals are always cold) and I was half asleep as I hadn't slept well for many nights in anticipation and fear of this treatment. And of course, by the time they got to me - the anti-anxiety meds I had taken had worn off. LOL But the soon replaced them. Yippy.

So, then I was in my room. Private room, my own bathroom, table, several chairs. Quite nice actually. It wasn't until a few hours later that I realized that my cane had been left under the gurney I had been in earlier!

Majorly upset - as it was late at that point and the area where they had done the procedure was closed - so they couldn't find out if it was still there. (My cane is a unique cane....from fashionablecanes.com - so it's not just a drug store-easily replaceable cane). Oh well....maybe I won't need it much longer. I asked the nurses to see if they could have a hospital cane sent up to me.

At about 10pm, the nurse came in with the small little bag of the goods(cyclophosphamide aka cytoxan). Before this, they had been giving me IV fluids for a few hours, as well as anti-nausea medicine and a med to protect my bladder. Well, then the nurse got suited up - not quite in FULL bio-hazard gear, but a toned down version of it. Enough of a get-up to make you scratch your head and wonder what the heck was in that little IV bag that they were going to infuse into me!

LOL

The drip would run for an hour. At first I think we were all tense in the room (my and two of my closest, dearest friends). Then we started to breathe better as time went by with no bad reaction. About halfway through, I had a bad headache - different kinda headache than I had ever experienced, and it was tense. We had tried some percocet, but it didnt really touch it...so they gave me morphine. I've never had morphine....and I didn't really like it. Didn't make the pain go away, though I didn't have an adverse effect either, other than just making me feel a little icky. After the bag of chemo finished, I was okay. Hung with my friends for a bit, then off to bed for a little bit.

Hard to get sound sleep in a hospital, as you are woken up every so often to get vitals checked. Im a light sleeper though, so every time the nurses opened the door to check on the IVs or anything, I was awake. Not the greatest for me - but certainly not their fault. Oh yeah, saline drip runs through the night - gotta stay hydrated. Speaking of - I don't think I have gone potty so much in 6 months combined as I have in the last 3 days!

Seriously!

Anyhow, I slept as much as I could, then it was Friday morning - 4th of July - independence day! The official begining of my freedom from MS ****? I hope so!

My next dose of chemo would be around 6-7pm, as every day they bump up the time. So, Thursday 10-11pm, Fri 7pm, Saturday 3-4pm, Sunday noonish. Hopefully released from hospital on Sunday! yippy.

Okay, need to finish this post a little later - getting tired again. In summary, day 2 of chemo went really well. no major effects except nasty nasty headache. with today's dose i had a little vertigo and it made me queasy. However, no nausea, no puking, nothing. just tired - actually they gave me an anti-nausea medicine (compazine) which knocked me on my ***** very early tonight...and i just woke up from 4 hours of dead sleep! it was excellent!

Will update more tomorrow....

Yes, I still have MS and I'm still sick. What does the future hold? I dunno, we'll see - stay tuned!

Going back to sleep - so tiiiiiiiiiiiiiiiiiiiiired. grabbing my teddy bear....

nighty nigh,

~Keri

Twinkletoes · 07-05-2008, 02:19 AM

Thanks for the update, Keri.

Glad you were able to get some good sleep. Happy you have a nice room.

Sorry you lost your cane!

Hope you get it back tomorrow. But, yeah, hope you don't need it soon!

Hugs and well-wishes to you!

RedPenguins · 07-05-2008, 02:26 AM

Oh Rochelle - my bad - I forgot to add - by the next morning (Friday morning) it was found for me!! very happy about that.

Also wanted to add - the nurses and all the staff here are ABSOLUTELY wonderful! I've never experienced such caring - genuine caring - from medical professionals. I mean, I've had good doctors in my lifetime - but this - this is astounding. I can certainly see why JH is consistently ranked among top hospitals. These people are great!!!

Okay, back to bed ---- soooooooooooo tired.

Oh yah - they also tried to take me up to see fire works tonight! but I'll update again later.

~Keri

chrishadms · 07-05-2008, 07:56 AM

You go girl! You won't wake up all better but you will at least be able to start getting better. It'll take a couple of years but this will all seem like a dream!

PolarExpress · 07-05-2008, 09:14 AM

I'm glad things are going so well and that they're taking good care of you at the hospital! Thanks for the updates..All the scientific papers in the world can't beat personal experience, and I appreciate you sharing that with us..Not much longer to go, just today & Sunday! Hang in there and know that you're in our thoughts and prayers!

tovaxin_lab_rat · 07-05-2008, 10:02 AM

Thanks for updating us Keri! This is just wonderful that you can keep us posted on your progress.

Glad they found your cane for you, too!

I hope you continue to do well and that your headache goes away!

Take care!

SallyC · 07-05-2008, 11:12 AM

Wow, Keri, I am so impressed and so happy for you, that, so far, all is going according to plan and you are doing so well.

Sorry about the headache and hope it goes away soon.

Thanks so much and looking forward to your next update...

lady_express_44 · 07-05-2008, 11:54 AM

Thanks for the update, Keri.

It's great to get a blow by blow about the treatment, and I'm looking forward to hearing about this experience right through to complete recovery.

Cherie

Desinie · 07-05-2008, 02:25 PM

Thank you so much for the update, Keri. Glad to hear all's going well and that you have such great nurses watching over you. That's a huge plus and I'm sure makes you feel much more comfortable. I'm praying that you recover fully from MS and that everything continues to go well.

starfish · 07-05-2008, 03:27 PM

Keri, I can't believe you can still keep in touch and feel well enough to do so!! That is so great. You are incredibly brave and determined. I really hope this all works out for you!! You have the spirit of a pioneer!

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