Chemo in Sept 08
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Genia,
Yep, it was day 17 for me when "handfuls" were coming out! I had to tell my manager I needed time off to deal with my hair! (I work at home, but still!) That is the day I went and got a really short Pixie cut, that was adorable! Well, for a while, then it fell out, little by little.
Hair. Ugh.
But it's only hair. It will grow back! (This is my mantra!!!)Springtime
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I'll get used to it......just right now it's the initial SHOCK......cause it's a reminder I'm sick!!!
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Hey all, I made it out to lunch with friends with the new buzz - covered by a great hat...I didn't want to let my nerves get to me - so did some other shopping as well. On the odd front, my top scar from my port (where it goes in my jugular) is infected - all of the sudden - we thought it was fully healed...not sure what set it off, but I'm on a week's run of anti-biotics to try to get it controlled.
I've decided I have good ears, and a decent head - and will be okay with the bald. The shower was so easy and I like the cooler feel...again, this is definitely the right time of year to be dealing with it. I have client meetings next week, so will probably opt for the wig then - but otherwise, like the hats...I wore a scarf out to dinner last night and decided I looked like a pinhead...but with good ears.
Have a good day all.0 -
Dear Ladies
Thanks for all the help and camaraderie!
My scarf covered head was gawked at with aversion 2 days ago. The lady just stared and stared and refused to look away. So, i did a "bad thing" - i whipped off my scarf and smiled at her. Kojak is having fun!
once upon a time, BC, i would not have been so bold...must be the chemo brain giving me all this courage.
Sam
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priz, my son also had chemo. Can I ask what your son's diagnosis was? I just find this whole experience different for him, since he is so familiar with everything. In a weird way, it has been very bonding. My son had leukemia, relapsed, bone marrow transplant, graft versus host disease, but is now doing well! As to drinking, thinking of water makes me feel ill. Maybe I overdid it when I was getting chemo, but even pouring water for my son makes me feel awful.
Losing my hair is so outwardly visible, that it makes it hard. It also feels weird to wear fake hair around. I mean, who puts fringe on their head? Oh wait, half of hollywood does that, but just not my circle of friends. I'm a very natural person, so it feels so against my grain. I do like hats, and at home go with just my head. My neighbors will just have to adjust!
For my last AC round, I'm stocking up on lollipop and popsicles. One thing I noticed this last go round, is I feel better when I'm eating something. That moment. It doesn't last, but at least at the time I'm eating it feels better. So, I'm going to try the lollipops and popsicles. I just have to live through that one more AC treatment, so I'll let you know how it goes.
Springtime, I saw your question on mast surgery. Let me know what you find out. That's ahead on my treatment plan as well. Do you know when your surgery will be?
Colleen
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Sam - Good for you. I think of things like that often, but haven't actually done it.
The first day I went with my wig, my son sent me off with a smile. He said, remember, if anyone laughs, just remember you gave them a smile for the day. I didn't expect anyone to outwardly laugh, and they didn't, but it did send me off with a happy feeling. Where did he get to be so caring?? He is a teenager?
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BrandonMom-How old is your son? he sounds like a great kid! My son is 17yrs old and has Hogkin's lymphoma.He has been in remission for a year now, but has some new swollen nodes. We go day by day, both of us. He has been unbelievably supportive through this and he truly understands. That is a wonderful bond btw us.
Going to try to eat like you said, maybe I'l feel better. Nothing tastes good or even sounds good. I golook in the frig and see nothing that I want.
I have decided no wigs for me. I will do scarfs and hats or just me. Asl ong as I am not working, it's Ok with me. I hope it doesn't ofend people, but why be something I am not??
Popsicles and lollipops-good suggestion. Thanks!
D
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Genia (my favorite grandma's name!) I hope that you are able to receive SSI or SSD...I tried, and was denied on both counts because they don't expect my treatment to last longer than one year or end in my death. My oncologist has deferred me from working for a year, and I'm considering appealing SSI's decision.
I also picked up a wig...gorgeous...I just need to take it in to get it thinned out on the sides...I love scarves, bandannas, and hats...
Today I just felt so incredibly lonely. I've only completed two FAC's, two rounds of ten leukine shots, and a mess of scans...and I start looking at the big picture, and it's so damn overwhelming! I make the phone calls of the people that want to help, and ironically, they're busy...no harm, no foul. I just want a hug...a shoulder...someone to just BE...and I swear it would make it more bearable...
I'm sorry to be such a poop...I just needed to put this down.
Robin
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What is the difference in SSI and SSD, Robin??? I am soooo clueless with all this stuff. Hey I worked......so I had no reason to need to know what all that was.
I got approved because my cancer had mets to the lymph nodes. If it hadn't....I prob wouldn't have. They are saying it will be a year before I can return to work......so dunno if that makes any difference. The kind of work I do requires a lot of movement. And when I finish my chemo then I'll have my mast!.
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And Robin you are NOT a poop........God knows I've done my share of complaining. And that's what we are all here for.........each other!!! So don't feel you have to appologize for unloading!
BIG cyber hugs girl..........
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SSI is straight Social Security, whereas SSD is Social Security Disability...since I was applying for one, they had me apply for both.
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Thank you for the hugs, Genia...!
I just feel like crap.
And I'm spotting.
Do the surprises ever end?
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I had a problem refilling my anti-nausea pills (Kytril). My insurance company only allows 10 pills/month...that is not enough when tx is every 3 weeks! They said the ONLY way I could get more is if I had at least 5 tx/month...so my wonderful nurse told them that is what I am having! When I picked up the pills, there were 60!!! I won't need to get anymore refills. LOL
AC #2 this morning...just a slight headache so far. Crossing fingers that I make it to the Relay For Life tomorrow.
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Genia,
I just read on another thread that there is an organization that helps breast cancer patients in financial need. You might want to check it out.
Christina S. Walsh Breast Cancer Foundation; 609-448-5420; christinaswalshbcf.org
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Genia - I can't believe what they give you for SSD. My son who's 24 gets SSD because he is bi-polar/schizophrenic and he gets $523 per month. He doesn't get food stamps, but he does get medicare. Something doesn't sound right.
I have reached the point where I can't eat with the metal utensils anymore. I had to spend $107 at the dentist today because I've had a tooth that I've been babying for almost a year because I didn't have the money for a root canal. Well, the wonders of chemo kicked in and I couldn't even bite down on that side. I told the dentist that he either had to find a temporary fix for it until I could get a root canal or he had to pull it. So he drilled it and filled it and hopefully it will get me by. I did check with the onc before I saw the dentist to make sure it was ok.
My hair hurts, but it hasn't fallen out. If I follow the same schedule here that everyone else is on it'll start falling out on Sunday or Monday depending on wether you count the day of chemo as day 1 or if day 1 is the day after chemo.
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Ruth, so glad the arm is alright and you don't have lymphodena!
. I was advised to wear a compression sleeve when I travel on long flights, so the build up of fluid won't have trouble draining from the arm that has had all the lymph nodes removed.Got to go out for a while, there are so many posts I will catch up later, but I have read them all and am thinking of your all and sending positive vibes, and big hugs for you all.
Take Care Singapore Chris
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Jane....I think they have me tied to my ex husbands Social Security which would explain why I'm not getting that much. I WOULDN'T if he was getting his too.......
I talked to my case worker at the Medicaid office today and she called down there.......and they said there was an child attached to my file somehow, but there shouldn't be.....because they told me my sons weren't eligible because I was getting the maximum amount..........yes I'm getting SOOOOO much there Mr. SSI..............I think it is all messed up.
JOY JOY I think I'm getting a virus.......I'm getting diarrhea again......only this one has cramping and upset stomach like a virus.........grrrrrr...........this is gettin old!!!
Juli I'll check out that link.......thank you for posting it!
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Hi All,
I have been in major reclusive mode...breezing through side effects until Monday. I had some TMJ pain, never had that before, so OP sent me to ENT for an eval. ENT said I was stressed and threw my jaw out of alignment, but wanted a CAT scan to rule out anything else...Tuesday the ENT doc called and said yup, stress must have thrown your jaw out of alignment, but you also have a 1.5 cm brain tumor on the other side of your head, most likely benign. Long story short, looks like an acoustic neuroma totally unrelated to my breast cancer and they can fix it with a gama knife surgery after my chemo treatment. So I have an unrelated brain tumor, this is far more upsetting to me than the breast cancer and I am not sure why? I do know that I do not want anymore scans as it seems they always show something! I am struggling to stay positive ...
I am looking forward to a trip to France ASAP! I love the food....Tomorrow I get my wig fitted. I also lost the rest of my hair this week. SGIF
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Ruth, I love your new photo! Is that your Husband? Did he shave off his hair too? You do have nice ears. Something to be thankful for!
Sing Chris, who knows - maybe some Butt Paste would make the wig-wearin more comfortable - awfully messy though! I know that you are going to be groovin when you see your son! I can feel your Joy!
Genia, it's probably related to all of the additional stress in dealing with all these government talking heads- well at least it's not making your situation an easier. I truly hope that you are able to find some relief and just be able to concentrate on you getting better. If I come across anything I'll be sure to pass it along. I recently read something about a college student putting himself through school by asking for a penny from everyone he met; makes me wonder when he had time to go to class or study? Hmmm I meet a lot of people each day - something to think about
Good grief CJ - I'm sure that you're thinking "enough is enough"! Don't blame you for saying sans to the scans. My pre-surgery CAT scan showed something on my liver that my surgeon was not concerned with; but my oncologist wants to investigate this finding after my treatment is complete. I've just got to concentrate on getting through the last two treatments and then I can take on the liver!
Hope that everyone has a good weekend; please take care!
XXOO
Donna
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Wink:
If your liver shows anything, check out radiofrequency ablation. .
Peeps
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priz, my son is 15. It is very bonding. Though, I have to say, finding out my son had cancer was way more hard than being diagnosed myself. I remember the moment they said he need chemotherapy and I just lost it. When I was told I would need chemo (I had already seen him go through it), I said when can I start! I have to say, he handled it MUCH better than I ever did. He said it was easy since he was getting free cable and gifts! We definitely have different memoriees of the time! I'm glad to know that he actually enjoyed being 4! I decided to do the hats and scarves, and even at work. I remember seeing a segment on one of the morning shows. The bottom line was the more comfortable you are in your own skin, the more other people around you will be. I'm more comfortable with scarves and hats, and I'm sure a wig would not fool anyone I'm close with, so I just decided to go with what I was more comfy with.
CJ! OH my gosh! In a weird way, maybe it was good you threw your jaw out so they scanned and found it! It would scare me too. On one of my CT scans they said my cervix was enlarged. I had a pap and a ultrasound to check on that, although it would also be unrelated to BC. They found a fibroid, and now just waiting the results of the pap to be sure. At this point, I feel I've been scanned a million times. I know I have scar tissue on my lungs and I know that I have arthritis, on yeah and a hiatal hernia. Who knew! I guess you can't go through 45 years without a few knocks!
Robin, hugs!! You are where I was on Monday and Tuesday! Today I feel much better. It does get overwhelming at times.
Hang in there everyone!
Colleen
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update on AC #2... I'm vomiting and have a killer headache... it's going to be a long night.
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Juli50:
Sorry ot hear that. My onc gave me Vicodin and Motrin and said to alternate every couple of hrs. Did you onc give you anthng for the pain?
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Hi girls,
CJ what a nasty shock, you poor thing, when it rains it pours! One thing at a time is the only way to go, sounds like some others in the group also have multiple problems, lets keep supporting each other and we will all get through it all.
Robin, You take care, it must be very difficult if you husband is on the road and you don't feel you have anyone close enough to give you the support you need, lot's of cybers hugs being sent to you from us here in the group. Hugs.....................Hugs.........................Hugs....................
Juli50, sorry to hear you are vomiting, I know it's horrible, hope you can sleep throught the whole thing tonight!.
I feel good today as I have finished round 2 chemo pills this morning and am going to a party tonight. There will be three of us at the party with BC, they are my chemo freinds, so it should be good fun, when we get together we always have a great time. People look at us and wonder why we are so happy, but we know that every moment (when your not vomiting etc....) is worth living!
Take Care everyone. Singapore Chris x
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Sorry you are feeling bad Juli......hope you get over this hump soon sweetie!!!
hugsssssss
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Thanks for all the well wishes! I was able to sleep without any more vomiting. I woke up with the headache though. I took a Tylenol. So far it has stayed down, along with an anti-nausea med.
Just wondering if I should attempt breakfast. LOL
Hope everyone has a good weekend!
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Getting my hair buzzed today........oh I'm dreading it!!! But I'm shedding like a dog.......EVERYwhere..........lol. I looked in my bathroom floor and it looks like it's falling out more than I even thought it was. Oh well.......small price to pay!
hugssssss and hope everyone has a terrific weekend........
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Genia,
apply for both SSI and SSD. You may qualify for both. The it depends on where you live. My daughter gets both in calif, but when she moved to Tenn. she lost one of them. She has RA. It also can take a long time to get...just keep up with all the papers they send you and never let an appeal go. That way they will make everything retro active back to the date you applied.
I have to shave my head today too.....so sad. It is falling out in sheets, had chemo AC #2 on Thurs.....so far so good. The give me really good pre meds....even the nulesta was easier this time with the zyrtec and some IB. Thanks to all for the tips. It really helps since the docs dont share this stuff with us
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I have to go down to the SS office Monday.....to try to get this thing with my insurance card straightened out. So I will talk to them then about it. Got my bandana and ball cap on. At least that will keep it from shedding until I get to the hairdresser to get it shaved off.
I'm thinkin I will end up getting a wig.........just for times I go out. I'm so VAIN about my hair.......can't help it.......that's what being a hairdresser does to you. I'm the kind of gal that has to have my makeup on and my hair done before I feel completely dressed......lolol
I shouldn't be like that......but it's hard to change something that has been instilled into you since you were a teenager. I must say tho.....this bandanna and ball cap feels pretty darn good on my head!!!!
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Julie50,
Sorry about the vomiting! Did they give you Emend? (Appologize if you already reported on this, this is a very active list, and I may have missed! )
Springtime
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