shrinkage
 

My tumor is not shrinking. This isn't going to kill me, but the fall out will. I 'll die of liver failure due to years of liver abuse but I woulda survived the CA. My bald head. I look like a baby chick with all that funky fuzz up there, my face has no features (no brows, lashes, just mashed potato feautures flung into a heap---sorta like CLOSE ENCOUNTERS when the guy went ape at the dinner table and sculpted the alien mountain out of taters...)


anyhoo---this sux. Just thought I'd still tell ya that. Plus, I"m lonely, too.

:comfort:

I'm sorry things are looking down right now, Bri. Hang in there, we're all pulling for you.

hi bri. we're here.

We love you, Bri. And you are still beautiful, babe. Hair is inconsequential, really. Just dead cells, you know?

Thinking of you, beauty girl. :)

crime spree anyone?

Just thinking about what happened to you and your wig makes me want to throw myself through a glass window in some sort of strange protest against life and it's ridiculous injustices. Just an urge. I'll get over it.

I can't even say anything....so I won't.
We are here for you is all.
:)

Don't have much to say about that - just that I'm thinking about you. You could have a lot of fun with hats:)

Hugs.

Ah Bri, you still make me laugh when you write
Sorry the tumour's not playing ball yet - if good thoughts could heal it, it would be the size of a pinhead by now. But I guess we'd best rely on medical science for a while longer.

While you're feeling at our lowest and feel you look like something out of Grimm's Fairy Tales, I suggest you do something outrageous. Because you can't feel any worse about things and it will make you laugh when you get better.

My suggestions of once-in-a-lifetime things to do when you've had chemo:
- Go into the place where you usually buy shampoo (pharmacy, supermarket etc) with a scarf on. Queue up at the counter with an empty bottle in your hand. When you get to the front, whip off your scarf and say loudly, "I want to speak to someone about this product!"
- Go to your nearest amusement park with a friend, get a wheelchair and get to the front of all the queues - any murmers, again show your head and shout, "I've only got a month left goddamnit!" Especially make sure to get your bald picture taken on every ride.
- Buy a full burka. Hell, you might get some suspicious looks but at least you won't have anyone thinking of gravy. Might raise some eyebrows in the liquor store though.
- Go to a local event where they offer face painting. Ask to be painted up as a plate of potatoes. Then you'll know what it would really look like.
- Draw a tattoo on your head to freak out your family. Like "God Is Stopping My Hair Growing" or something. Tell them God will hoose when you grow enough back to cover it up.

I hope these help. Love and kisses on your head - it's what's inside it that's special, remember.

Bri...how much longer do you have with the chemo? What's the next step after that?

Sorry Bri that sucks...

Bri, I'm sorry to hear that. Don't be afraid to bring up a change of gameplan with your onc if it looks like this isn't working...
Best wishes.

Bri, hang in there please. Do it for yourself. Dance with every day like it is your last, embrace life. Smile. Be happy. Don't let the dogs bring you down. Please.

Hey, Bri, hang in there.

Another suggestion to go along with Sundae Girl.

When people act stupid and say "What's wrong with you?", you respond -
"God took my hair because you touch yourself at night."
Just a thought...

Good luck.

you all are the best---sundae, the idea about whipping off my scarf at the drugstore and demanding to talk to someone about the 'product' is a killer--as all those ideas are! I like GC's idea, too. the problem is agoraphobia and they are not givig me enough ativan (anti anxiety drug) to treat it---only 0.5mg every eight hours! LORD! that wouldn't shut my dead grandma up! My doc friend thinks I should go see a pain specialist---they can prescribe pain meds for people in recovery without fear of licensce. I need schedul II drugs like oxycontin--something with a kick but no tylenol to kill my liver. SO. I need more drugs and somethihg to manage this constant crying from being rudely thrown into menopause without preamble.

I took some ativan but I really want a bottle. nothing quite evens out the brain like a smirnoff.

In some way, I hope this makes you feel better, but it probably won't and I'll just end being an ass in the end. Just know the intention was there.

A childhood friend of mine - 36 years old and father to a 1 year old baby boy - was just diagnosed 2 weeks ago with stage IV melanoma, a very aggressive cancer. It has spread to his blood and they found lesions on his stomach, and both intestines. It's so far progressed that there's nothing that can be done. Even if there was, he lacks the health insurance and resources to do so. He is dying, and he's dying soon.

My boss's wife went to the hospital 6 months ago for a sudden onset severe headache because her primary care physician's office was closed. A day later she was diagnosed with an extremely aggressive brain tumor that had grown to the size of a lemon. A week to the day from entering the ER, and coincidentally their 25 year wedding anniversary, she convulsed and died. A week. Not even enough time to accept her diagnosis and see her family.

I guess what I'm saying is if nothing else, remember that there's always someone worse off than you, and to count your blessings, even if they are small ones. Every day is a gift.

mea culpa.

I'm just simply weak.

thanks for the reality call.

No, you're not weak. I know that.

I didn't mean to make you feel bad by relaying such sad stories. Papa Smurf's mother went through all the chemo and radiation and eventually had a double radical mastectomy. She lost all her hair and all that, but now she's healthy as a horse. So there's a positive story for you.

I can't imagine what you're going through. Just seeing what my friends and family are going/have gone through, it scares and amazes me at the same time. I take so much for granted. I've noticed that the old adage that you really don't know what you've got 'til it's gone is awfully true. I'm really trying to remember this every day and be thankful for my health. I pray that each of us, ill and healthy alike, stop taking life for granted.

Chin up. Believe in the power of positive thinking.

I haven't posted before in this thread because I honestly don't know what to say. Certainly nothing as funny or uplifting as others' posts. The only thing I want to address is the "I feel lonely" comment. It's important not to isolate yourself--vitally important--and to keep making connections with people. Even this kind of virtual connection can help (and I hope it does), but it's important to make connections with the real people in your life, and I hope you keep that in mind.

Other than that, please be assured that we are (and I'm sure I can speak for most, if not all, Dwellars in this) keeping you in our thoughts and hearts.

Yeah.... what Cloud said.
I wish you were closer Bri, so I could come over and hang with you.
What are you doing with yourself at night? There are always a bunch of losers in chat that would love to keep you company...

and we make fun of people in mean and nasty ways, too! it's right up your alley

Jimbo is always there. It's almost like he's got no real friends, really...

Some of us have real friends?

Well I have one.

I used to have one . . . I think.

Hey! I resemble that remark!!!
:D

As far as "there's always someone worse off than you", I know exactly what Smurf means, but I cannot put it into any better words either...but when my daughter was terminal at 2 1/2, after a 13 mo. battle with childhood cancer, whenever I was at my lowest "why me / poor me" place, I would always run into someone I felt was a little worse off than me.
At one low point while spending one of many weeks in the hospital - Sheena was about 19 months old and having a week long chemo treatment, I ran into a 21 yr old girl who had a 3 yr. old daughter who had brain cancer and a 6 mo. old son having open heart surgery. One kid was on the 2nd floor, the other one on the 4th floor on the other side of the big hospital. The young mom was running back and forth trying to take care of both her kids all alone.
Those kind of things did always seem to happen when I was at my lowest.
I am so sorry for how you're feeling, Bri. It SO SUCKS!
We're here, please stay strong for yourself and your son. And DO keep us updated often, please!

:grouphug:

I am very sorry to hear that your treatment isnt working as well as hoped. I can totally understand the emotional roller coaster you are riding today. I was diagnosed with lymphoma when I was 21,that was 20 years ago. Like you I went through the chemo,mine was AVBD:Adriamycin(a really pretty shade of red that burned like hell when it was pumping in),Velban(derived from the periwinkle flower and a compound that my father actually worked on at Lillys,he told me that when it was his turn to drive me to treatment),Bleomycin(clear solution didnt hurt anymore than the saline)and Dacarbazine((milky white and freezing cold would bring on chills and a blanket from the nurse). Its a very rough road you are on and I wouldnt wish it on my worst enemy. I remember my first treatment I came out and felt fine even stopped at a hotdog cart and had a dog,a couple hours later and I was on the floor by the toilet generally for 12-14 hours. I guess by my third treatment I was gagging and nauseous halfway through the treatment. Towards the end of the regiment just the smell of rubbing alchohol would make me sweat and gag. Bald, not a hair left on my body. Weight loss 25 pounds from a slim 180 that to this very day I have yet to see again. The hair grows back soft like a babys hair its really nice and will start returning right about the time you lose all of your hair,its very fine so you may not even notice it at first but it will grow back while you are still taking treatments. I only took the Ativan one time and I thought it made me sicker sure as hell didnt help. You need to hook up some good weed its the only thing that ever made me feel better. Try some maybe 36 hours after treatment when your head is starting to clear a bit but you feel like death warmed over. You live in Ohio and have maybe the most liberal pot laws in the lower 48,up to 96 grams is equivalent to a traffic ticket. I always had a big fat bottle of Percocet and if you dont have the same or eqivalent you need a new doctor,life is sucking bad enough no sense in you enduring unnecessary pain. If the chemo does fail you there are many other options for treatment that you can seek out. I know how hard it is to eat,nothing ever sounds good,nothing tastes good but you really have to force yourself to eat. If nothing else eat junk,ice cream pie cake cookies whatever it is its better than nothing. Its so awful I feel so bad for you,sometimes its like every inch of you hurts,brushing your teeth and any sort of bold taste can be a very painful experience,use that sensodyne toothpaste if you dont allready,it helps alot. I know that strong smells would really bother me with perfume being the worst along with strong smelling food. Baby soap and baby shampoo have very mild smells you might try some of those.Basically they are pumping drano mixed with clorox into your veins every week or so and you have to ride it out. Its so hard to go anywhere because you feel like crap almost all the time,you may feel good for an hour or two and get ready to go out and lay on the bed for a second then its tomorrow. Its a very strange existence the slow poisoning. I mean here this may be the end of your life and you want to do so many things to try and live it but your are being poisoned and can hardly pull yourself off the floor or the bed most days. I wish I could do more to help you feel better,just dont lose hope and give up,thats just what it wants. You need not look to others who have it worse to find comfort,think of how many have lived much shorter lives even if they live one day less than you,you have had a better life. Try and do things that create wonderful memories new things that you will never forget. If when we die we can take anything with us the only things they could possibly be are memories.

I'm not sure if it's for me to say this, but that post was one of the best I've ever seen on this site shoot.

Thankyou for sharing.

that was an excellent post----you said it all, shoot.

thanks.

wow - just wow - awesome...

:tears:


Our school lost a mom to cancer yesterday. This helped, thanks.

Bri, I feel so helpless. Just coming here to tell us you're having a really shitty time requires a strength I'm not sure I possess. I can't even begin to imagine how much more strength it needs to cope with all you are dealing with. You rock and you are winning and you will continue to win every moment you fight and you ask for help to fight. We may not be able to provide the help you need, but please don't stop asking. I'm sure this makes no sense at all, but given all the other bullshit (;)) in this thread, I reckon I can get away with it. I just wanted to let you know ....well..... something, anything. That I'm here and I'm thinking of you and if thoughts were any use that cancer would be dead meat on a dull stick.

Great post, Shoot.
I've been wanting to post here but I was at a total loss for what to say. So can I just add ... "what he said!"
Maybe you can contact some other survivors in your local area that you can meet in person. You're walking through a really horrible tunnel, maybe the best thing is to hear a voice from up ahead - from someone who has been through this and who can reassure you that the tunnel really does have a way through and out into the light (and may have useful practical advice too).
All I can offer is: be strong, keep visualizing your future healed life.

Thank you guys for the comments,Ive been thinking of her and this thread all day. Its a really crappy hand of cards shes been dealt. I just wanted her to feel no quite so alone. Its a very personal experience and quite difficult to share with others when you are going through it. I hadnt even thought to suggest she contact a support group of some sort. When I was in treatment I met 2 other people via my Dr. One was a girl who was only a couple of years older than me and was in her second round of chemo or had just finished. It was really great being able to talk to her when she allready knew all the angles,she even went to a treatment with me. The second person was a man in his early fourties who had taken chemo in his early 20s for it and had a recurrence right around 20 years later. One of the drawbacks to chemo is that it makes you more susceptible to many different things later in life,so Ive always had that to look forward too. No regrets though if I go tomorrow Ill be very happy with my life and very grateful for the extra time given me. I was also told that the chemo would make me sterile,I wound up having twin boys on down the road a few years,they are almost 15 now so the doctors dont have all the right answers. Not being able to eat is what does a lot of people in I think. The chemo targets areas of rapidly dividing cells which describes a lotof different cancers. Unfortunately this also describes cells in your mouth,stomach,hair follicles. So you go bald,all your hair eyebrows eyelashes you name it. You throw up then feel like crap for days on end and just when you start feeling a bit better,perking up some...its time for another treatment. Your mouth will hurt so bad sometimes even the saliva makes it hurt,tastes make your eyes water from the pain especially the first bite. Your friends and family sort of shun you. They dont know what to say,you know they feel bad but uncomfortable I guess it seems.Sorry to run on.

shoot, thanks for putting words together so nicely and describing what is going on with me. I"ve never been very good telling my side of things--i just get all frustrated and figure people should just KNOW--ha! I'm delusional, I know that! Your posts have kept me company these past two days and i thank you and alll the other dwellars who have posted or just had a thought of me at some point. I am going to go see a psychologist who works with cancer pts. and see what we can do about gettting me a new oncologist. I HATE my oncologist. We have a failure to communicate....well, it's not so much that it's that he can't BELIEVE i'm in pain and miserable and I can't believe he can't believe it! He doesn't see what the fuss is all about.

Good lord,the skin on my hands looks like gnarled wood. oh, this stuff ages you.

Thank you shoot, for giving us a hand with what this is physically doing to Bri.
And the mental effects - I for one forget that the brain is just an organ, susceptible to side effects and poisoning, because it contains my "me-ness" so I think everything it tells me is valid.

(Just one polite request? Could you break your posts up a little - they are so important and can be a little hard to read on a small screen)

Bri, do you have any cancer societies or charities?
In the UK we have Macmillan, who cover everything from specialist nursing to helping you deal with finances. I've linked their site just because they have some useful cancer info.

Mum's friend used them as a shoulder to cry on when her husband had cancer. Literally, the woman would turn up, Jean would make them both tea, then she would cry for practically the whole appointment. She felt miles better afterwards. Her husband made a full recovery btw, he's run the London Marathon for Macmillan.

I know you don't feel like reaching out, but if it's a specialist cancer charity they will at least understand.

Anyway, you have us and we only see the important part - words on screen as a direct insight into your brain. And I really appreciate you coming here, even when you're being dragged through medical hell, to give us news of how you are. I wish I was closer. I'd do what my friend did when I had depression - put a note through your door to say I was going to the pub and would be back in 30 minutes, and if you didn't answer the door then I was calling your Mum. It worked - she even got me out of the flat.

Keep going C, lots of love.

hey sg---i wish you could pop by, too coz you're not going to the pub without me!

there are groups here---all sorts of Cancer groups. I"m hooking up with one called PALS (breast ca chickies) and they are paying for me to see this psych so i can figure out if this is 'normal' sadness/depression or abnormal or whatever. they do meet once a month,too, for a group chat/share time and ususally have a guest speaker, too. they seem really nice. I just am feeling so---unbeautiful. I am afraid I won't get resconstructive surgery....my oncologist is unsympathetic....oh, just miles of junk. I cry every single day and i feel very very lonely. the loneliness is the worst of it.

You can always get me here darlin'

If I could change the world I would, and I'd be two doors down from you and you'd send me away with a flea in my ear for bothering you all the bleedin time with my Baileys flavoured ice cream and just one mouthful of my roast veggies and here are pictures of my cats, why don't you come and see them etc etc

Or ideally you'd be here in the UK and I'd drag you out. To a quiz night. And I mean DRAG. So you could prove your mind is still strong and damn your sick body.

But I can't, and it hurts me. And I know you are living in total fuck-uppery, so I am not for a second trying to trump that. Well, there you go. After all our conversations about similar experiences at least you know you win now.

I think about you every day. PM me your address again - I can't send you a cure, or anything with real value, but if I can send you some words it will help me. Selfish to the end ;)

Hi, ya'll.

Just finished treatment number four (and my last treatment with taxotere---the drug made from the pine needles of the European Yew tree) and three weeks from today (or, actually, from yesterday) I start four treatments with this stuff called Adriamycin--a different sort of chemo drug made from--well, I'm not sure. I still get the neulasta shot after the chemo and that is the thing that causes the pain. the chemo just makes me tired but as the weeks have gone on the symptoms have become less severe. The worst thing now is the menopause symptoms. Menopause can make you nuts and I am pretty close to nuts anyway. It has the strang effect of making me cry everyday for very little--or no--reason. I look at the street or the houses or the christmas lights and i think how sad they are and i start to cry. I have spoken to other women and they have said similar things about meno symptoms---one woman said she would just go into her room every day for an hour and just cry and then try to get on with her day. Sometimes it comes out of nowhere and is very embarrassing to start crying in line at the market.

This is the first year I have no decorated for christmas---i see no point. The boys never cared anyway--never said, "oh, nice tree, mom" or helped with any of it so I don't feel too bad about that except that it points to some real lack of spirit on my part. I never really cared if the boys wanted the tree and all the trimings, I did it for me. Now, I don't even care.

I am trying to pay my shoebox full of medical bills, and to be honest, most billing agencies really are bending over backwards to help me and I am grateful for that. Very grateful.

Things that concern me are the little things: I've stopped wearing earrings, painting on my eyebrows, cleaning the house, cooking. sounds stupid about the earrings but I've worn them all my life, everydday, even if i was just hanging about the house or running to Mcdonalds or watching Oprah. Now i'm thinking of giving them all away. And,no, this is no pathetic cry for help, pre-suicide planning, etc. it's just how this has effected me. I have never been strong---well, i USED to be a strong person, back until I was about 30. Now I'm a slow train wreck.

I don't want sympathy (so, if you don't want sympathy, why write this, right?) I don't know. I just want SOMEONE to know what I'm feeling. and yes, i've been to my psych three times in the past three months with three med adjustments, I've been to my primary, my surgeon, my oncol and talked to the cancer research nurse. I'm doing everything they are telling me to do. mostly, I look out my living room window, I miss school, I miss the work. I miss you guys--a LOT. I'm usually too tired to fight this damn computer to even write (though I'm certainly long winded tonight, eh?) I don't feel, look or think like myself (something called 'chemo brain').

get your mammograms, get your tests, go see your doctor. NO inconvenience is worth the total clusterf_ck of cancer---even the 'easy' cancer that I have. I would be willing to have a worse cancer if I had a better brain---- one that wasn't so committed to being my enemy, one that didn't hate me quite so much.

god bless you for listening to what must sound like the worst kind of self-pitying treacle this side of Danielle Steele.

kiss to you-----claudette

Ps--the computer thing. I got a new computer and i really hate the keyboard. it feels so funny to me and even the type looks different. I had a pro set it up for me (yes, I am that computer-unsavvy) and he couldn't get the speakers to work and it's just messed up even though i paid 106 dollars for him to do this for me. I've used this guy before ("HOme Computer Helpers) and he seems really decent enough, I just don't know why it's not as good as the last one---i went from a crappy emachine to a HP vista home premium but to tell you the truth, I was happier with the emachine. do you guys have any advice? I sure hate to spend another 106 dollars. can I just switch the keyboard back and do you have any ideas why my speakers won't work now?

Call him back to fix the damn speakers -he hasn't done the job you paid him for.


...then see if he's switch the keyboards over as a compensation job.

Warm thoughts goin out to you Bri.

hi bri. keep writing. i won't say anything stupid like i know how you feel, because i don't. but i do feel for you. as always, we're here for you.

and tell the boys to put the damn tree up. it is important to you whether you realize it or not.

It's Vista, it may be incompatible with the sound hardware.

If the new computer has the same size and shape hole for your old keyboard, you can use the old keyboard with it.

Ah. what should I do? buy new speakers that say they are compatible with the vista? I know that sounds obvious and dumb, but, I mean, is there such a thing as that?

Hey Brianna, it's alright to feel this way and to tell us about it. Actually, it's great that you tell us about it. We care about you.

Just keep moving forward. Do what needs doing, whether you feel motivated or not. You'll get through this.

It's more the computer itself, rather than the speakers. Who made the computer? Was that a custom job too?

Bri, I'm just another one chipping in to say we're here for you. I read what you write, feel for you, wish I could do more. Keep on keepin' on, and Yes, ask the boys to put up the tree for you this year. It's the least they can do.

I understand it. Whenever someone at work starts chemo, they are transfered to my department.
Usually they miss time, sometimes a little, sometimes a lot. But either way, when they are there, they crave human contact.

They experience being talked about in hushed whispers on the outside and sometimes even at home. People pity and patronize them, when they really just want to be accepted as someone with a problem, not a pariah. Talking about their sickness allows them to reinforce they are still a human being, with all that implies, not a rotting carcase to be tolerated.

No matter what you're seeing in the mirror, Bri... I know it's still you in there, baby. You feel like shit, but you're still that irascible bitch we all love. :love:

Ditto.


Crack open a bottle of Bailey's Irish Cream, put on "Santa Claus Conquers The Martians", and remember, we love you.

Or "Pass The Ammo," if you get tired of that Conquers the Martians theme song. Tim Curry's (yeah, that Tim Curry) an evil televangelist.

Sometimes xoB just nails it, you know?

Keep on keeping on Bri. This is giving me flashbacks to when Mom went through it back in the eighties. Tough times.

Had a friend from Leicester down the last two days, Bri. She has some sort of chemo every week (have said before I don't understand exactly what, sorry) and she sympathised with what I told her you were going through physically.

But more than that, she had a friend die on Sunday of cancer. It was actually faster than anyone expected but Teri has been going through it with Anna for a few years now, and known she was terminal for a year. After Anna's diagnosis (recurrence and a prognosis of 18 months max) she sat down her friends and said, "STOP treading on eggshells around me. I'm still me. Ask how I am if you want, tell me about the plans you're making for your silver anniversary in 2 years, tell me about you - I know I have a limited time but I am still me!"

And that's you. Except you're not terminal. You're ill, that's all. It's a really shitty stick to be hit with, but it's not like you were born stupid or something fatal like that, right? The day you start posting about how Ann Coulter not only talks a lot of sense but is also really attractive in a ladyboy kinda way is the day you get my real sympathy.

I'd give you a patronising rub on your fluffy little fledgling head any day.