March 2011 chemo-lounge
Comments
-
OK, now I really need a cry
my brother is a musician and hs just sent me a song he has written for me.
Not the same without the music, but these are some of the words. I think they apply to all of us:Woke up and I realised this isnt just a dream
I blink, you turn your life around and nothings as it seems
You're not alone
Don't think your on your ownVoice inside my head can make no sense of it at all
How can this be happening, the tides about to fall, the fight is on
We all know that you're strong
I believe the sun is shining just for youDont stop to think whats fair or right its time to make a stand
Look past your horizon and well take you by the hand and lead you on
You know that we're all strong
I believe the sun is shining just for youThe tasks ahead stretch out so far like mountains cold and tall
Walking right beside you we'll catch you if you fall
we'll lead you on till all the pain is gone
I believe the sun is shining just for you
If I'm not mistaken the world keeps turning just for youThey say that love conquers all
well if thats what we need there's no shortage at all
I believe the sun is shining just for you0 -
OK, now I really need a cry
my brother is a musician and hs just sent me a song he has written for me.
Not the same without the music, but these are some of the words. I think they apply to all of us:Woke up and I realised this isnt just a dream
I blink, you turn your life around and nothings as it seems
You're not alone
Don't think your on your ownVoice inside my head can make no sense of it at all
How can this be happening, the tides about to fall, the fight is on
We all know that you're strong
I believe the sun is shining just for youDont stop to think whats fair or right its time to make a stand
Look past your horizon and well take you by the hand and lead you on
You know that we're all strong
I believe the sun is shining just for youThe tasks ahead stretch out so far like mountains cold and tall
Walking right beside you we'll catch you if you fall
we'll lead you on till all the pain is gone
I believe the sun is shining just for you
If I'm not mistaken the world keeps turning just for youThey say that love conquers all
well if thats what we need there's no shortage at all
I believe the sun is shining just for you0 -
OK Pennycookson...now you got me crying! What a great brother
0 -
Tears here too. Can he record it and save it to youtube? What a tribute. Thansk for sharing.
0 -
Penny: You're lucky to have a brother like that. I have a great one too, so I know how great it can be. crying here too. Tell him how much it means to your bc.org chemo sisters to know he loves you that much. Thanks for sharing that.
0 -
Penny, that is so great. What wonderful words. As I head for the chair this morning, I will carry those words with me. Your brother loves you so much.
hugs, min
0 -
just catching up had chemo yesterday number2 and unfortunetly hit me within 3 hours lst time it took till day 2 maybe this means I will be feeling better earlier one can only hope. Penny tears here too, also a crier. here is my go too song worth the download for you needing a cry
Two tear drops by Steve Warner
two tear drops floating down the river
one tear drop said to the other
im from the soft blue eyes of a woman in love
im a tear of joy she couldnt carry
she was so happy she just got married
i was on her cheek when she wiped me away with her glove
i could tell from the loook on her face she didnt need me
so i drifted on down and caught me a ride to the sea
the other tear said we've got a connection
im a tear of sorrow born of rejection
im from the sad brown eyes of her old flame
she told him they would be life long companions
left him with questions and not any answers
i was on his cheek as he stood there calling her name
i could tell he had a lot of my friends for company
so I drifted on down and caught me a ride to the sea
oh the oceans a little bit bigger tonight
two more teardrops somebody cried
on of them happy and one of them bluer than blue
the tide goes out and the tide comes in
and someday they'll be teardrops again
released in a moment of pleasure or a moment of pain
then they drift on down and ride to the sea again
last night i sat in the wating room
the nurse walked in and gave me the news
its a baby girl and they're both fine
an old man sittin not 10 feet away
just lost his wife and he said to me
you've got a brand new angel and I've lost mine
i guess the good lord giveth and the good lord taketh away
and we both wiped a teardrop from our face
back to corus
have to nap now after listening to this on youtube. hugs and love to you all
Kymn
0 -
penny: what a beautiful song and a beautiful tribute. I am crying, too. We should all revisit those words on our down days. Thank you so much for sharing.
0 -
Panny: Tell your brother we are all crying....such a special song. That says it all - even if he never told you in a conversation how he feels. Not many people get to hear such affection and love from those that love them...sometimes those are the things we just never say to people even though we should. You are lucky.
Kymn: Sorry you are feeling crappy already! Too unfair. What did you drink, tequila??? I will be talking you up until you are hangover free girl. You can do the same for me next week after I am in the chair.
0 -
I'm with husker. Would love to hear the song on YouTube, Penny.
Never heard your song, Kymn, but it's a tearjerker (pun intended!)
Hope everyone is doing well and ready to head into the weekend.0 -
Things I've rediscovered since I went totally bald:
a port wine stain on my head that no one's seen since I was a baby.
a tattoo on my neck I haven't seen since the early 90's.
hats!
0 -
Hi Bikenyc, love the new look. I too shaved my head way down today. Went in for my second treatment today only to be told that my wbc was too low, we'll try again on Tuesday. ugh, now I have to get the dreaded neulasta shots and was hoping I didn't have to get those after hearing about all of the pain.
0 -
Speaking of brothers-let me tell you how special my big brother is. He came by today to borrow some money and while he was here he grabbed my hair and tugged while saying-"Glad to see you're still hanging onto your mop!! Then he looked down and realized he had a whole handful of pixie dust (dead pixie cut hair). He couldn't decide wether to vomit or run away. It would have been really funny but it kind of hurt. The top has hurt for a couple of days and started shedding yesterday.I guess the end is near.
My youngest brother is taking me to a giant flea market tomorrow to shop for cheap wigs and doo-rags. Somehow when it got out there was breakfast involved there are now 11 family members trailing along. Nothing like a pending balding head to bring a family together.
Going to be a beautiful weekend here in Ohio so I intend to have some outdoor therapy. The chemo-sobby episodes seem to have passed thank goodness.
Hope everybody has a great weekend-and the SEs subside quickly
0 -
Min: I took the claritin and aleve and I had no bone pain for my second treatment.....see if that is something your doc will allow. My first treatment I did not do it and had the aches and bone pain. I hoe your WBC go up! Darn it....that's a big bummer. I know you just want to get this over with!
Lily: family members can sometimes be worse about saying stupid things than strangers. My mom was over for dinner and had a huge conversation about how all her cousins were dying from cancer right in front of me...nice hu? Yesterday she started talking about chemo and my "treatments" right in front of my 8 year old niece...my poor niece almost started crying (they are having a very hard time with me having cancer) and my mom was completly oblivious. She just kept talking...... Now I have to call her and tell her no cancer talk in front of any of the kids...she will get all bent out of shape. She also talked about more cancer stuff in front of my sister's kids (whose dad just died from cancer a year ago) and my sister confronted her and told her no cancer talk around the kids...she got all mad. Lord...what's up with family hu? I guess I am telling you just so you know you are not alone. I hope you have a good shopping excursion tomorrow.....all eleven of you! I am sure it will be interesting.........
0 -
hey migallen,
I know a lot of people are having problems with the neulasta shots, but I haven't had any problems at all (and I normally can be kinda achey). 50/50 chance you'll get lucky. And my wbcs have stayed level the entire time. If only I could say the same for my rbcs. They need a shot for that. But since they don't have one of those yet, having a steak right now...you know, you do what you have to do.
0 -
Well the Neulasta shot has kicked my WBC up to 27! So I am hoping next week they will say I don't need it, or at least not so much. I can hope, right?
Darn tingling/numbness has continued to the point that I am limping the last two days. Finally got them to prescribe something so hoping that kicks in.Even went and tried accupuncture, with 10 needles sticking out of my knee and foot, plus laser. That puts the ACK in accupuncture. Am supposed to go back Monday, but we'll see. Now am back to hoping drugs work instead of alternative therapies!
On a good note, my 30 yr old niece is here for the weekend just to hang out with me, cook, clean, whatever I want her to do. We're going to get our nails done in the morning and go to a new sushi place nearby, go shopping. Things I used to do with her mother (SIL) before her death almost 5 years ago. It will be a healing weekend for both us.
0 -
bikenyc too funny about the steak...on new years eve I ended up in the hosp for blood transfusion due to low counts and the docs would not postpone it to a dif day. I made the nurses run the blood really fast so I would be out in time for dinner with DH and friends, then I demanded I get the best steak in the house!
0 -
Hello all,
I am on day 3 out of chemo. Had my Neulasta shot yesterday. I hadn't had it before and was somewhat anxious about any achiness. So far nothing except some extra bone cracking. No real achiness. I took some ibuprofen (at onc nurse's suggestion) last night at bedtime, but still nothing, so maybe you will get lucky and not have SE's from it. They gave me Emend this time for nausea, it's doing the trick. Except, it makes me really tired! I feel like I could just sleep and sleep. Just rested yesterday.
DH hovering over me again like a mother hen. I just try to let him. It's his way of showing support. He went out for a couple of hours, so I started the dishwasher and am doing some laundry! He wouldn't let me if he was home. No crying here. Sometimes I feel defeated and could cry. My sister is still upsetting me. People I barely know are so much more concerned and involved. I buzzed my hair down to 1/8 inch Tuesday, trying to get the loose hairs out with lint roller. Kind of funny feeling, but it's itchy where the stubble is and I just kind of want it gone. It's like picking at sunburn peels or a scab, I guess.
Hope everyone is having a good weekend. It's supposed to be 90 here, too hot for me to go outside. I start sweating and get dizzy, ugh! I hear the couch calling...I'm tired of being tired!
0 -
The day of reckoning has come. I got out of the shower and pulled my hand through my hair. It was a huge chunk of hair that came out! I stood outside on the deck with my head down and pulled out so much. I think I could have basically pulled it all out, but I have a lot of hair to start with. I had hoped to squeak through to Chemo #2 on Wed, but no such luck.
My DH has been away all week and won't be back until tonight. I debated waiting for him to come home but it seemed to be raining hair. So I got my 17yo out of bed, told him to get some breakfast and then take the clippers to my head. He's had his own head buzzed so he knew the drill.
The only thing that seems to be bothering me is that now, those who didn't realize that I have cancer and am going through chemo, can't possibly miss the fact. I look like a cancer patient whereas I could fake it before. Otherwise, it's not the worst thing to happen to me. It's better than some of the other SE's! I've had stick-straight hair all my life and I'm hoping to get some curly hair out of this, even temporarily
Time to go pack up all the hair toys and tools. No point looking at them for the next few months.0 -
good morning ladies, day two out of chemo number two and feeling weepy and sorry for myself, had to shave to shiny bald yesterday as the stubble was hurting, not feeling great about it but at least my head doesnt hurt anymore, I just want this done sigh sorry just feeling ichy today hope you are all having a better day than me
hugs Kymn
0 -
Hello everyone. Add me to those feeling icky. I still haven't shaved my head, but there's not much there to shave at this point. Feel like I'm rolling around in hair last night. Every time I turned over it felt like my face was covered in hair. But I have really fine, thin hair and there is just a tiny bit left now. I was hoping to last until Monday when the dog was getting shaved. Not as weepy, feeling a little less like a cry baby. What a beautiful song Penny! Your brother got all of us with that. Enjoy your shopping spree Lilylady! Wish I could tag along too. Nice weather here in Philly this weekend too. Going to go out and soak a little of it in. Have a great weekend everyone. Hope everyone is feeling better.
0 -
Kymn,
I'm on the same schedule as you - just had #2 on Thursday. The remaining stubble on my head hurts. Just curious, how did you shave it shiny bald?
Round #2 so far is easier than #1. Claritan and being more relaxed this time around seem to be helping
Day of treatment I rode my commuter bike to the library at 4pm and discovered my chest and face were slightly sunburned that night as I went to bed. Wow - does chemo make us that susceptible to the sun?
Hope everyone is doing well!
Hope everyone is enjoying the weekend.
0 -
Lovely ladies in the lounge~
First of all, I do hope you are ALL enjoying a good and relaxing weekend. Went to my restorative warrior yoga class this morning, came home, reading some of the threads and have a question: I notice that some of you have gone for manicures or pedicures and are eating sushi. I was told, just to be on the really safe side, to NOT have mani/pedis during treatment and also to avoid all raw food (raw vegies, nuts, etc.) just in case it has bacteria. When I told my onc and nurses what my diet is (super healthy/organic/lots of vegies/no meat/lots of fruit, nuts, etc.) they said that's terrific BUT eliminate anything raw only during chemo treatments so as to avoid any possibility of getting bacteria. And they recommended no raw fish (I LOVE sushi!) for the same reason. This was also the suggestion for no manis/pedis....I know we need to follow the advice of our own drs, but isn't it interesting that some of us got this recommendation and others didn't???? My daughter and I go regularly for pedis and I'm missing that bigtime!!! My last of 4 treatments is May 9, so after that I can resume everything, but was wondering if any of you were asked NOT to eat raw foods/nuts and to avoid manicures/pedicures during tx? Just curious.
A friend of mine who went through BC last year suggested Ponds Classic moisturizing creme for my head...so I bought a jar and boy does it feel good on the scalp. I'm almost 100% bald but have some hairs that want to hang on for dear life...I keep encouraging them to come out already!!! But the Ponds is mild but moisturizing and feels really good (and is safe) for the scalp so if any of you want to eliminate that itchy feeling, try it. AND it's very reasonable.....much more so than the divine Lancome moisturizer I use on my face (not giving up my Lancome tho'!).
Here's to a great week, ladies, we're pushing forward toward mid April, toward spring, toward better and warmer weather no matter where you live, and toward the end of all of our chemo treatments, and certainly better times ahead!
Aloha~
0 -
Mauimamma- I was given a booklet the Cdn Cancer Society publishes and told to follow their guidelines. It says to "try to avoid" raw or undercooked meat, seafood, fish and poultry.
I wasn't told to avoid mani/pedi's but was told to not let anyone cut my cuticles (don't like that at the best of times.) The pharmacist who works in the chemo clinic suggested that my nails be kept very short and be coated in nail hardener. He also said not to do dishes--at all--with or without gloves. Luckily my DH was there to hear it! The kids have to take his word and not just mine.
It is interesting to note the differences in our various instructions. No one has suggested anything like Claritan to me for any side effects. Nor has it been suggested that I can use a sleep aid. I have been told to absolutely avoid ibuprophen--nothing but aceteminophen for me.
Maybe our treatments are a mix of science and personal experience on the part of our drs. No hard and fast rules that work for everyone, but lots of guidelines that oncs feel more or less strongly about recommending to patients.
Like you, I'm here for a good (?!?!) time, not a long time and I will just suck it up and do what I'm told.0 -
I was also told no nsaids-which would be Aleve. Tylenol only. I had to literally beg for a sleep aid and the antique crap they gave me left me with a hangover til almost noon. I has asked for Ambien and she said this other drug would work just as well. No anti-anxiety meds, no steroids, no Neulasta, no nutritional or any other advice. I am seeing the onc on Weds-only my 3rd visit with him-the first 2 visits he had to cut short because he was a guest speaker at different events. My intentions Weds are to tell him i am seeking second opinions and if he asks why I have a list printed up for him.
Constant changed appointments, so many mistakes in medical history, sent for tests only to find out they were not scheduled by the nurse, i could go on and on. I am very sorry i went to a big place instead of a small practice.
I am trying to get scheduled at either MD Anderson in Houston or Cleveland clinic. I want to hear what couse of treatment they would prescribe. Due to the stage IV they would be able to see me in a couple of weeks. No way are they cutting out half my liver until I feel better about how they are managing my care.
0 -
Pasmithx2~
I agree with you totally, treatments are definitely a combination of science and personal experience. And while doctors are not perfect, I have to believe that for the most part, they have the best of intentions in treating us, or any patients for that matter. I feel badly and at times angry when I read of the horrible treatment some of the ladies have received at the hands of their onc or nurses. I thank my lucky stars. I've received excellent care thus far but have also realized that I must be my own advocate. I've spent many years in the legal profession so it's instinctively my nature to ask lots of questions. My daughter graduated from law school, so when you put the 2 of us in front of a doctor, we are armed with questions!
You're right -- as I recall now, I was told to not have my cuticles trimmed, but since I think that's an important part of a mani or pedi, I'll just put them both off for another 5 weeks, and then I won't have any reservations about having a mani/pedi WITH cuticles being trimmed!
It was never mentioned to me about not doing dishes....but I've always used gloves, so I'll just continue to do them. Besides I'm single so if I don't do them, they won't get done!!!!
I was told by my plastic surgeon to only use Tylenol which I've only used on a small number of occasions. I think the most important thing is to pay attention to our body and if something seems not right, to ask about it and not assume it's a side effect of this or that. Not only emotionally, but physically our bodies are working overtime these days and it's important to honor that, be cautious and proactive. I'm always praying I won't jinx it, but after 2 treatments (3rd one is Monday), I've experienced extremely mild side effects so far. Outside of the little unwanted tumor that got removed, I'm in excellent physical health, work out daily and have for many years, and have no health issues, so despite my age (over 60), I'm hoping that being in good physical health and being fit is and will continue to be an advantage. Not boasting, believe me, just realizing that maybe all the years of working out and eating super healthy & maintaining a positive attitude is making this experience a little easier for me than I expected. And not that it's been a walk in the park, but it has been far easier than I imagined. I am very grateful and every night I thank God in my prayers. My only experience of chemo was many years ago when my husband died of lung cancer and went through a few chemo sessions prior to his death. But this was back in the 80s and they didn't have any of the anti-nausea drugs then that they have not and chemo was just brutal on him. When I learned that so much progress had been made in that respect, it gave me a little relief knowing I wouldn't suffer like he did, poor baby. Thank God for advances in the pharmaceutical industry, eh? Maybe one day they'll be able to produce chemo drugs that don't cause hair loss. I say that as I rub my bald Buddha head!!
Hope you're enjoying a relaxing weekend and have a comfortable and stress-free week ahead~
Aloha
0 -
I will have to ask about the raw vegetables. My oncologist didn't say anything and I make a juice drink almost everyday with raw spinach, an apple, some cucumber and a few blueberries, ice and water. Tastes great and I am hoping the spinach helps to keep the rbc up. So far so good.
I am on weekly taxol with herceptin and so far (3 completed) my se's have been very mild. The worst thing is going on currently and isn't even related to the chemo (at least according to my onc). I have had a kidney stone for several years that has been monitored with no change. It is now suddenly acting up. I hope it is leaving the building and I can move on!
0 -
Just adding my two cents to the discussion. Both the oncology nurse and the nurse practitioner have told me not to eat any raw fruits or vegetables due to the danger of e. coli or salmonella contamination. Also no manies or pedies at a public salon. My doc says the only pain reliever allowed is Motrin, but I'm not sure why.
0 -
fluffqueen01- I was told raw fruits and veggies had to be well-cleaned, preferably with a food-grade produce soap. Some fruits and veggies are hard to clean (ie: raspberries) and those should be avoided. Otherwise cooked veggies and fruits are preferrable.
0 -
I was not given any food direction at all. No one said anything about not washing dishes (that would be nice), raw foods or mani/pedi's. Interesting.....I did get lectured more than once about exercising.....because I was doing it. My doc and her PA's are on me about it. You would think I was doing something harmful like smoking for God sake. So it's very interesting they say nothing about what foods I should/should not eat, but they yell at me for exercising. I have been eating lots of apples. I also eat spinach on my sandwiches all the time and eat lots of salad with fresh, raw veggies. So you can't eat fruit during the 9 weeks of chemo? That seems nuts......no salad either???? What are you suppose eat then, junk food???
0
