Chemo in Sept 08
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That sounds like a great idea with a turtle neck. Just one problem.......I don't OWN a sewing machine.......heck I don't even think I have a needle and thread! lolol
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OK, I have a confession about gawking. I remember when I was about 26 or so, I was in grad school. This lady was attending and I noticed her hair was very thin. She was very pretty, just had thin hair. But each week it was getting thinner, so I did notice and try to figure it out. i had absolutely NO experience with cancer. I honestly just didn't know what was happening, and was just trying to figure it out. Imagine a dog with his head cocked trying to size things up. After a few weeks, she had full hair (now I know a wig). She did say hello to me, so I know she noticed me looking. I said hello back, and I'm sure not overly friendly - I felt I had been caught looking. It still really didn't occur to me she likely had cancer and was in treatment. She really was one of the first people I have ever bumped into.
I feel so bad now, and she must have thought I was gawking. In reality, I just didn't understand. I should have said how nice her hair looks, and given her a big hello and talked with her. I just didn't know. I feel so bad, and it must have seemed so obvious to her. Perhaps she thought I was stand off-ish because I thought it was contagious. It isn't true, I was just ignorant and really didn't know about cancer. If I could replay time, I could. I just didn't have the experience then, that I do now. I wasn't scared by her, or trying to hurt her, I was really just confused and was trying to figure it out. It took YEARS, but I finally figured out what she must have been going through. I can't tell you how many times I wish I could go back to the moment. I'm sure I really hurt her feelings, but I just didn't know.
So, I guess if there is anything to be gained from this, it is understanding from the other side. Please, don't think that people who are standoff-ish realize what you are going through, and are just looking/gawking to be mean. In time, they, like me, will probably figure it out, and then feel like a big heel. Just forgive them in advance. I hope/pray that the women I met may know that. I hope she forgives me for just not getting it.
At the same college, there was another person that was doing the switch from a male to a female. That situation took less time for me to figure out,and I think it is because more people were talking about her. No one ever spoke about the women that was losing her hair. I almost wish they had, as it wouldn't have taken me years and years to figure it out!.
I have to say that I have met far more people who have just been over the top nice to me.
Colleen
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Hey all - Monday again. I get my 2nd tx on Wednesday so crammed a lot of feeling good into this weekend...it does make you appreciate the good days. On the gawking front, it is for all sorts of reasons. I found myself right after diagnosis oogling this beautiful blonde mother who had a major case of neck goiter - we were in Nordstrom's, and she looked so confident and beautiful. I knew I was about to get a mast, but would be able to hide it...I was so impressed by her strength...but so into myself, that I didn't say a word to her. Yes, I would love to re-do that moment as well.
Donna, my husband has been shaving his head for years - so he was very good at buzzing mine. He was gone for the weekend, and when he came back I had lost probably a third of my buzz - he said, I just wish you could lose it all at one time so we didn't have a week of little hairs everywhere...he's super supportive and makes it much easier for me to deal with everything.
I do love the ease of cooling off with the buzz - and the quick showers - but now the pubs are going, and that bothers me more...weird. I went to pluck a few stray eyebrows and they came out with no resistance. I had thought I wouldn't loose those on this regime - but I'm guessing I'm wrong...
Tonight is my 3 yr old grandson's bday party - better get those cupcakes frosted. As to sweets - refined sugar is said to be a major fuel for cancer - so I do limit that pretty severely - fortunately we have a couple of bakeries/restaurants around here which specialize in using honey for sweetening...or I just limit the amount I eat...I think somehow you have to enjoy life, not just avoid cancer. I do eat much healthier since diagnosis and have seen my taste buds change to crave some better choices...but there are certainly days when M&M's seem like the best option.
Have a good day all.
Ruth
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Especially the pink M&Ms (they have to be good for you, don't they?)
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I think M& M's arepart of a food group! (Even those don't sound good!). I was never a picky eater,but lately....
How do we keep our ears warm??? I am cold today! If I knew where my sewing machine was, I could cut up my turtlenecks! Good idea! My son always wore a beanie during chemo-now I know why!
I have noticed I avoid eye contact with strangers when in public. I'm not embarassed, just don't want to see pity in their faces.
D
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BTW, the american cancer society has instructions for how to turn a t-shirt (and should work for the remainer of the turtleneck) into a turban.
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D....I pull my bandanna down over my ears if they get cold.
And you could always be the fashion model like me and wear the pantie hose over your head.......don't forget to cut the legs off........or you look like a flop eared rabbit!!!!
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Genia- Wouldn't my son LOVE it if I picked him up from high school that way?!? His friends would always be talking about me.... instead of being the bald mom, I'd be the crazy bald mom!
D
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Oh!!! lets ALL do that on Friday when we pick up our kids from school!! I'm SO game!
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you guys crack me up! thanks!
I received a "pink ribbon" from Susan G Komen today, with instructions to take a picture of yourself with the ribbon displayed in some manner... is this what they had in mind when they said "as a hair ribbon"???
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LOLOL.......MINE wouldn't get in the car!!!!!!!! Well maybe my youngest would......but he wouldn't like it very much. The oldest would probably run.......lolol
Well Miss Juli.......you look ADORABLE!!!!!!!!!! I wish I looked half that good without hair! I look like a HEAD with eyeballs and ears! hehehe How did you get it to stay on there??? You look so cute.......
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It was just barely long enough to tie in a knot. LMAO
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I love the pink ribbon! You look gorgeous, Juli!
I couldn't stand the stubble anymore, so I just shaved it all off...so nice and smooth now! I'm kinda liking not having hair to worry about in the morning!
Sticking together, girls! We can SO do this!
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Good to hear I'm not the only one that is liking taking a shower and not having to blow dry my hair and style it.........what a PAIN!!! lol.........but I'm sure by the time we get hair back this will get OLD.....lolol
Even tho.......that wig thing is right up my alley. Just slap that baby on there........and out the door ya go!!! I can't stand goin without anything on my head. I've tried it all day today.......and my head keeps gettin cold. So I put my bandanna back on.
The UPS guy kinda gawked at me in my LEOPARD night gown and my black swirly bandanna.........lololol. I'm pretty sure I was a sight to behold.......but I DIDN'T CARE!!!! That's just the attitude I have right now. You don't like me........you don't wanna look at me.......then just get the heck away!
I bet he's gonna have wild sex dreams about me tonight.......whatcha think girlies????
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Genia,
You are a riot! You go girl!
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Genia - I bet if you patented those nylons in pink, you'd have a ton of people beating down your doors to get them!
Juli - I love the ribbon!
You guys do so much to keep my spirits up.
Someone thought the hot dog craving might have something to do with salt?
My dd and I made apple pies on Sunday after church. It's the first time I've actually felt good enough to do anything. Unfortunately, I had a piece last night and it didn't taste as good as it usually does. My dh and dd thought it was great! I've weighed myself once since my first chemo and I had lost 4 lbs in 9 days. It'll be interesting to see tomorrow when I go in for AC #2 tomorrow if I've lost any more.
My dd also called me at work today to see if any more of my hair has falled out because she wants to make sure she goes with me when my brother shaves it. Isn't she just so supportive? lol. And to think, she's 18! I don't know what's going on with the hair, actually. It's still downy soft but completely straight and it hurts at the top of my scalp. I can't understand how my hair can be firmly affixed today, but probably won't be tomorrow. Today is day 14.
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Ruth, hope you had a great time and took lots of pics at your grandson's birthday. Try not to be too upset about losing your public hair - just think of the money women spend on Brazilian waxes (and how painful they must be....yikes!!).
Re: pantyhose. Couldn't you just tie the legs up into a great big bow (Juli, you could use your pink "hair ribbon" as an adornment). Or, you could wrap them around your head like a turban - use them to cover your ears to keep them warm too. I wonder if the control top variety would give you a headache?
I saw the demonstration about turning your old t-shirts into turbans - it was pretty cool!
BC really has opened my eyes as to the plight of others; I feel like I've become so much more compassionate. I think that we are afraid of things we don't understand; it's so much easier to look the other way. I saw a woman in the Houston airport back in Aug who was obviously going through chemo (turban, no facial hair); I was just days away from having my surgery and I really wanted to reach out to this woman - she had two children with her and she looked like she was tired, but was putting on a good face for the kids. Maybe it was because of the children that I didn't approach her. I don't know that I would have even noticed her 6 months ago. Cancer is a tough teacher!
I'm enjoying the streamlined morning routine too!
Today was my Nadir day and my WBC was 20!!!! I don't have a fever and I feel pretty good (still tired) so my onc is pretty sure that my bone marrow got a can of whomp-ass opened on it from the Neulasta (not his exact words). For $3000 (haven't receive that bill yet) it should have kicked someone's (or something's) ass!
I really enjoy visits from the Brown Santa (UPS), but I thinkin he'd have to be way desperate to have wild sex dreams about this bald, boobless, babe! Hmmm, maybe I'll have to get a leopard nightie - I wonder if the TLC store has one with pockets for my silicon girls?
Wishing you all minimal or no SEs and a good night and bright tomorrow!
XXOO
Donna
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Don't know what I would do without you girls........you are such a blessing to me!!!
You make me laugh so many times.....and I have cried with some of you.
And Donna......I think we could write a song and call it the SILICONE GIRLS........in the same tune as Cinnamon Girl by Neil Young...........lolol
Only somone besides me is gonna have to write the words out......cause I'm no good at that!!! But I'll sing it if ya write it........lol
Nite all.....hugssssss
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Leaving tomorrow to go see my mom.Not looking forward to it. Need to shave off my fuzz tonight. Not sure how much computer time I will have, as I am not bringing my laptop.
I've heard people say their pets act strange-mine still licks me all over,follows me around, etc. They stay closer to me than usuaul....
Should I go to the airport with my pantyhose head?? People would stay clear of me so i wouldn't have to worry abt people coughing all over me!
Hope everyone has a good week.
D
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I have had 3 non-cancer surgeries in as many years and my dog has never acted funny w/any. However, when I had my breast biopsy this summer he went bananas. He would practically knock me down and kept sniffing my breast biopsy site. They say some animals can smell cancer. Anyway, I told my friends that my dog gave me a PET-scan. He has been so clingy since my diagnosis and surgery. Used to sleep at my feet when I was on the couch. Now he climbs up on the back of the couch and sleeps behind my head.
Funny thing about my hair. I had it shaved about a month ago and at that time the roots were pretty white as I color it and hadn't kept it up as I know it was soon going. My head is now covered with dark brown stubble about 1/4" long except for about a dozen white hairs that are much longer. Almost all of my original hair is gone and what is coming in is no longer white! Maybe it will be darker when I am done w/my chemo.... anybody know anything about this?
It has been 5 1/2 weeks since my first chemo. My hair was coming out in handfuls by day 10 and shaved by day 12. Started losing my eyebrows pretty quickly and now my eyelashes are almost gone. The eyebrows and eyelashes seem to be bothering me more than losing my hair.
Lastly, when I catch someone staring at me, I just give them my biggest, friendliest smile and they usually smile back. I guess I don't think they are intentionally being rude. Maybe they are just wondering what kind of cancer I have or just feeling bad that I have cancer. Anyway, life's too short to sweat the small stuff and when you have cancer, to me a stare is small stuff compared to the rest of it.
I have my next chemo on Thursday. #3 out of 4!! Hope you are all doing well.
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HELP NEEDED FOR HEARTBURN / HIVELIKE SKIN ITCHING & TAXOTERE REACTION:
I had a fairly decent first round and the second didn't seem to be much worse . . . until lately!! I am due for #3 on Thursday, but am struggling a lot with SEVERE heartburn and itching (sometimes bordering on hives) on my arms, legs, hands and feet. I have tried several OTC's (Tums, prylosec, etc for the heartburn without much relief . . .maybe a little relief with Zantac), but am curious if this heartburn is something that can be treated up front.
My other biggest complaint is that I will go for 3 - 4 days without sleep after getting my TC infusion. Not sure as to what I am getting in my cocktail, but do know that I am taking two pills for the next two days following infusion (2 x 4mg of dexamethasone)... Any ideas as to what I might ask them to adjust? Just for the record, my blood counts have been good; tested on day 9 of round 1 and all was well, and the day of tx for round #2 I was told that I looked 'totally normal' and that I did not need to come in for an interim test before round #3.
Add'l info: really bad allergic reactions to Taxatore during both infusions resulting in the need of 25 - 50 mg's of benadryl to offset. Otherwise, did okay.
Will appreciate any info or insights that you can share and wish you ALL the VERY Best!!
xoxox, Rickster
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Hi Girls,
I have had a good time laughing at all the recent posts, thanks girls I really needed it.
Rickster, You may find that what you think is heartburn is not! I thought I had heartburn when I was on Taxetere, but later I realised it was some kind of damage to my insides from the drugs, It hurt especially after eating and I had a big pain just under my boobs, I am one of the lucky ones and still have them. It usually went away after a week or two, but I would talk to you oncol about it as he may be able to give you something. As we know the chemo attacks fast dividing cells, which of course are in the gut, so it could just be some temporary damage.
I also have trouble sleeping after chemo, I always take a sleeping pill for the first few days. The premeds I get through the IV (my chemo friends at the clinic call them the appertizers) contain steroids and I think it is those that are keeping us awake. I just lay there with my mind buzzing and it can be a long few nights, the sleeping pills do the trick for me. I have never in my life taken them before, but drastic times call for drastic measures!
I also got the hives type thing which drove me crazy and I thought If this is what it was going to be like, I couldn't cope, but I went to the dr straight away and he gave me claritin, which worked like a dream. I then took one claritin pill a day as soon as I had my next chemo and continued for a week. For the last 3 rounds of TC I didn't need them. Glad to hear your blood count is high.
The thing I feel guilty about, is some time last year when we arrived in Singapore my landlords agent kind of went missing and I wasn't able to contact him for about 3 months. It really bugged me as I had a lot of things that went wrong, so when I finally heard from him I said "I thought you had died or something!" I feel so terrible just typing it, I later heard that his wife had been ill and although I don't know what was wrong with her and I think she is alright now, I feel so bad as she could have died and a comment like mine was so insensitive. He was actually on national service during his absence, so should have told me, but having cancer certainly does make us more understanding in any circumstances now. When I see him again I will apologise!
All this confessing has got to be good therapy for us. Take care everyone, oh and Juli you look very sweet with your bow! and Genia you do have lovely eyes
Singapore Chris
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thanks for all the compliments. you all are so sweet.
my question for the day... when I had my Neupogen shots after my 1st tx, the pain was in my lower back. This time it was in my neck, shoulders, chest, etc. Anyone have the pain move to a different area like that on subsequent shots?
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Robin - re Nights in Rodanthe - my daughter saw it and didn't like it very much.
CJ - hoping you got really good news yesterday!!
Genia - you crack me up! Your panty hose story was hilarious! Great idea, though!
Springtime - re neurapathy - I thought I had read to take vitamin B6 (don't hold me to that though). Is that the same thing as L-glutamine?
Juli - you are gorgeous!
Hope things go smoothly for those having treatments this week! (((((((((((()))))))))) Wishing few SEs to everyone!
Susan
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Girls,
This list is so active I can't keep up! I can see everyone is mostly in a good mood! :-) Something to be said for a community where you all belong...
Julie50 - my pain was slight but seemed to "float" around from the Neulasta shot. hips, back, etc. (funny huh?)
I had my TAXOL #2 yesterday, so this is day #2. OK, get this, it was actually fun. There were 4 of us BC "patients" all clumped together and three of us were chatty, and it felt much less lonely! I also had a good book, "Water for Elephants" - finally off AC I feel like reading again. A good sign, more like ME!!
No sypmtoms yet. Last time, I got achey on night #2, and then more achy on Day #3, and by night #3 I crashed. But then that was pretty much it. The achiness wore off and I just felt like me again. Hopeing for a repeat performance.
One of the ladies yesterday, it was her LAST TREATMENT!! She was so thrilled. I have 2 more to go! yay!
Love you girls!!! Springtime....
PS. YOU ALL LOOK GREAT!! Your eyes are really like "bling"!!! what pop!!! GO GIRLS!!
PPS. I am trying L-Glutamine, Vit B6 is in my multi. I will have to look online! I do have a bit of tingling in my fingers, not bothersome so far...
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Jane - what a sweet daughter you have! My follicles were sore before my hair fell out at day 14 -I don't seem to be shedding anymore (buzzed it ~ day 17) and my head's not sore (1 month, 3 days out for 1st tx). I still have some brows & lashes, but they're getting sparce.
IowaGirl - After my 1st tx, my dog Dinah Soar would not leave my side! Even when my husband tried to get her to go for a walk, she would not leave the house (usually she gets so excited that she plows you down trying to get to the door). The next couple of days both dogs would just lay their heads on my lap and look at me with their big mournful eyes. I told my husband that it made me feel kind of creepy, and made me wonder if I was going to have a siezure or something. I didn't notice them being so clingy after the 2nd tx. I'm thinking that they could smell the chemo.
I had really bad heartburn after my 2nd tx (not with the 1st); my onc gave me a prescription for Protonics and said that I would probably need to use thoughout the rest of my chemo.
Rickster - I think that the sleeplessness might be due to the dexamethasone (same class of steriods as decadron). I only receive the one dose of decadron IV just prior to my TX; it wires me pretty tight for the first day & a half.
Springtime - I'm about half-way through listening to the audible version of Water for Elephants - wonderful story! Isn't it amazing how we can bond with others and make even a stressful event fun (you think that your milder reaction to your 2nd treatment was in part due to a "fun" infusion experience?).
SingChris - yes, confession is good for the soul; it also helps to know that others have footprints on their tongues too
.Priz - I hope that your trip goes well - let us know it the pantyhose are a good protection device.
Genia - LOL, I'll work on those lyrics; you certainly have the voice to sing it!
Susan - thanks for the well-wishes; how are you feeling?
You all look so pretty with your buzz cuts. Do any of y'all go out commando (hair-wise that is)?
XXOO
Donna
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Re: bald - I have to say I love the fact that I can quickly get cold. It is probably the best part of bald. I loved the nylons on the head - especially dyed pink - but really haven't had the problem. I used to sleep with a chillow to help with heat issues - this solves the problem. It's so much easier for me to get warm than cold.
Re: dogs - I rescued 2 puppies over the last 12 months. (Note: this should be done prior to putting in new cream carpet not immediately after.) They are definitely the reason I get daily walks or runs. Some days I'm not sure if God or the devil sent them my way, but they are a big part of my recovery.
Unfortunately there is a question on whether my port is infected - so they may be removing it this week. That would delay my chemo at least one week - I'm hoping it will be okay and I can stay on schedule for chemo tomorrow...more fun at the doc's....
On the normal life front: I read Water for Elephants and really liked it - that was before BC - still trying to get back into reading non-cancer stuff. On the movie front, saw Burn After Reading and laughed. It's not great, but John Malchovich isn't definitely my inner dark side...
Have a great day all - and hopefully tomorrow is even better.
Ruth
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Now I'm laughing at you going through security with the hose on your head - nice. That will get you wand'd for sure.
I love the "footprints on the tongue"...nice.
I drive and excercise outdoors commando - but if I'm going to interact with people, still have something. I think as soon as it is a smooth dome - I'll be commando even more...just love being cool....
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Ruth - I love the Cohen brothers! Is Burn After Reading out on DVD? I really admire you; I get home from work and it's all I can do to help with dinner - I end up diving while the dogs run around our mountain to exercise them (only one neighbor - no traffic). I know what you mean about cream colored carpet. My mom has cream color carpet and wanted us to bring the dogs with us this past weekend so that we could spend the night. Dinah Soar pooped on her carpet!!! I was so embarrassed - but my mom LOVES dogs and blew it off very graciously. Isn't your weather cooling off out there?
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Nope....can't go commando!!! I'm just now able to do it around the house.....but then I freeze and have to put something on my head.
I know.......no one is ready for my commando look.......especially after seeing the UPS man drooling after my sexy lookin body and leopard gown with coordinating black swirl bandanna!!! lmbo........
Ruth......I LOVE that picture of you and...... is that your hubby??? I can't see him very well.....
Tomorrow is round 2 for me........I hope I don't get the poops this time.......that was the worst part of the whole thing!!! Well that and that nasty Neulasta shot.........but hey it worked so I'm not gonna complain about it!!!
Good luck to all that are doin treatments this week........
hugsssssss and prayers
Genia
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