My HiCy update!

RedPenguins · 07-19-2008, 10:20 PM

Thank you so much everyone.

I'm home and relaxing. Okay, that's all I've done for weeks now - relax! I did manage to "escape" today - I went to the grocery store and video store late in the afternoon. A friend took me and I wore my mask and hat (I have almost no hair - I need to shave the rest now)....and I pointed to what I wanted and she took it off the shelf for me - so I didn't touch anything.

Well, now that my hair is definitely near gone, I am certain I did indeed have chemotherapy. Still can't "believe" it. Today I'm tired - but of course, that is probably because I went to sleep at 2:30am last night and was up at 4:15 so we could head to the airport at 5am...then flew for 5 hours. LOL. Okay, I guess that would make anyone tired, chemo or MS besides the point.

I was outside for a few brief moments today and it was quite hot today - and my vision didn't go out. This is a good thing, as before I left for the chemo, when I went outside in the heat, I'd go "blind" within a few minutes...but not today. Yippy. I notice some other small changes and it's nice. For instance, one of my MS symptoms was that I like never went to the bathroom - really, I'd pee in the morning, then before I knew it, it would be 9pm and I hadn't gone all day. I drink a lot of water during the day, so it's not from lack of intake. However, for the last week or so - I have been going several times during the day.

I met at least 7 people with MS having HiCy while I was at Hopkins. It's quite incredible really.

I will keep everyone posted.....but for now I wait and see

~Keri

kicker · 07-20-2008, 05:47 AM

When I thought tumor during the DX period and might have to shave my head, a friend joked that now I could get that whole head tattoo I always wanted. You too Keri!! Seriously, love reading your story, hope things keep getting better.

Jan4you · 07-20-2008, 12:06 PM

Hi there, I feel so remiss, as I'll have to read what your treatment has been for, forgive me ok?

BUT what a dynamite attitude you have~! We're here for you no matter what. I bet you found ways to cover your head or try wigs etc. or are you just going ala bald?? Whichever, I am glad your chemo has not gotten the best of you. Remember you were resting resting which conserves your energy. Now you are up doing things.

PLEASE keep us posted, it means a lot to hear from you. I responded only after SEEing your name and remembering it stood out!!

Sending you healing, serene loving thoughts..

Warmly Jan

Natalie8 · 07-21-2008, 11:50 PM

Hi Keri,

I'm glad you're back home in Cali. It sounds like you made it through with flying colors -- at least for the first and most important part!! I will keep my fingers crossed for you! -- sounds like the vision is already a bit better. Yeah!!

Natalie

RedPenguins · 07-22-2008, 01:08 AM

Jan - I had HiCy/Revimmune to treat the MS.

Natalie - yes, came through with flying colors and then some.

Thank you everyone for reading my updates....

Kicker - that's funny. I don't think I could do a tattoo!

I am officially fully bald. Not liking it so much...but small price to pay to be from MS. The actual treatment was so not difficult........I can hardly believe it. As I mentioned, my experience was probably atypical - but I'd still recommend this to people.

Will keep everyone posted....

~Keri

kicker · 07-22-2008, 06:38 AM

After her chemo for Cancer, my SIL and I went shopping for a wig - she got red. But for her it was too itchy and she never wore it. But she was an art teacher (and all that implies) and loved all her hats, which she had plenty of. No, she did not commit to a tattoo. RedPenguin, I see your name and always read your post. Thanks for blazing a trail for so many,

ewizabeth · 07-22-2008, 09:03 AM

Keri,

I'm so hopeful and excited for you. I hope you'll get great results from this treatment.

Dejibo · 07-22-2008, 11:11 AM

when I lost my hair due to chemo, I had a wig, but it was soooo itchy! i never wore it. I prefered the IN YOUR FACE, yes I have no hair kinda stuff. Sunscreen on your head is sooo important.

its awesome when it grows back all baby fine and soft! fuzzy wuzzy.

YOU ROCK!

weeble37 · 07-23-2008, 07:43 AM

Glad to read that you made it home and have seen some teensy changes for the better already.

I pray that it all continues to go well for you.

Looking forward to the rest of your story,
Weebs

tovaxin_lab_rat · 08-04-2008, 04:23 PM

Keri

How are you doing? I see that you've not updated us lately. I just checked one of the other forums you post on and you've not updated there either! Maybe that means you are doing very well and are very busy!!

I spoke to my neurologist on Friday about this procedure and she has an entire file on it. She doesn't think it is for me but at least she is knowledgeable about it!

I hope you are doing well!

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