March 2011 chemo-lounge
Comments
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Pasmithx2:
It's a hard decision, I know....we know it's inevitable yet it's hard for us to really let go, literally. My first TX was March 7th. I kept reading that the hair starts to shed around 2 weeks after 1st tx, so on the 21st I had a family friend cut it into a very short pixie, less than 1 inch all around. From that day to the following Monday, the 28th, I noticed I was really beginning to shed a lot...not clumps, but MORE than 5 strands at a time when I ran my fingers through my short cropped hair. Like you, I didn't want to wake up and find clumps -- too hard to see that. My 2nd tx was the 28th and since then I've REALLY shed -- at around 75% bald. I can tell you this, from my experience. It was much easier for me, emotionally and psychologically, to transition from longer hair to a really short haircut and then continue to transition daily and see less and less hair on my head. I don't know, maybe I'm weird, but looking at myself each day with the change that each day brought VISUALLY made it easier for me to accept that I was losing my hair. Not that I'm happy about it, but frankly at this point I'm eager for the rest of it to shed because where my scalp is bald, the skin feels really good...where it's got patches of hair, it feels itchy and I look like a mangy dog! Odd to say that, but we're all on this journey where we're having emotions and thoughts and perspectives we never thought we would. So, it's truly your decision but at the very least, I would recommend getting it cut super short -- I just think the transition will be easier for you because it will be more gradual and certainly you'll avoid finding clumps of hair on your pillow, in the shower, etc. Good luck, take a deep breath and keep remind yourself of 2 things: it's a short term loss for a long term gain AND our hair will grow back. Certainly make the decision you feel most comfortable with for yourself as that's more important than anything. All the best.
Aloha~
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Hey girls!
Glad to hear that most posters are feeling pretty decent. I hope you're sleeping better now, Kay-From-Philly. Btw Kay, I'm near Philly and I think we're both going to Penn's Rena Rowan Breast Center for treatment, right? I'm a patient of Dr. Angela DeMichele's, we might bump into each other there.
I had a weird chemo(?) SE yesterday. I woke up & thought I had a UTI (urinary tract infection). I'm not prone to these, in fact the one and only I've ever had was back in about 1987, but I awoke yesterday morning to burning upon urination. Not fun.
After considering taking a wait-and-see approach, I called my onc (just in case) and was told to go to the lab and give a specimen. I did that - and can I say how nice it is to do a quick and easy test - one that doesn't involved IVs or contrast dye or lying still in a loud machine for an hour?!
The lab tech told me the results of my will be ready in 24 -48 hours. Ok. Last night, right before bed it was extra painful to go, and my last thought before sleep was that I would need antibiotics to get rid of this. And I was slightly worried about my white blood cell count.
Woke up today - symptoms are gone. Totally gone. Huh? What was that? I didn't even get my results yet. I drank a lot of cranberry-pomegranate juice yesterday but could that really do the trick and so fast?
I'm going on a hunch, but I think it wasn't a UTI at all but rather acidicity in the urine. Anyone know if chemo does that? I'm not getting much info from my onc's office on this.
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Hi everyone, recovering well from MX with diep, all my anxieties gone, still not nearly as tough as chemo. I now think if I can do chemo, I can do anything. I am 6 weeks past last chemo before surgery and I swear the 2nd day home from surgery I had a total recall of the @#it Got real nauseous, had diarrhea for a full day and that awful taste in my mouth! I also just lost my eyelashes now?! I certainly hope this chemo wont revisit me whenever it feels like it .
Michelle67 I remember that pain when peeing, I think its the chemo coming out,remember it only lasted a day or two. Funny I had a male friend who went through chemo and he asked me "how does it feel to pee? At that time I didnt know what he was talking about, then I knew. He made it sound really bad so maybe its worse for men. Good luck to all you ladies, I never thought I would be at this point, but it goes by fast and then on to the next challenge.
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Michelle67, we are both going to Rena Rowan. I was there on Monday and pretty much will be there every other Monday, so next time I'll be there is 4/18. How about you? My doc is Carol Kaplan Tweed. I like her. Also Dr. Tchou is the surgeon. I really like her too. Are you the Phillies phan who posted how depressing it was yesterday to see the Mets beat them? Hope to bump into you.
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I know the chemo can be irritating to the bladder and kidneys. That can cause burning. You can try taking Uristat, which is a over the counter tablet you take with water and it will just numb stuff. I've been taking some cranberry capsules to try and avoid developing bladder infections, which I am prone to getting under normal conditions. I don't recommend cranberry juice...too much sugar. Cranberry capsules work just as well, if not better. They prevent the bacteria from being able to stick to the bladder wall. You can take larger doses if you need to. Cranberry capsules do not treat every type of bladder infection. There are bacteria that do not respond to cranberry. So, again...something to try, but also something to talk to your doctor about. Hopes this helps someone!
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Well ladies - it sounds like it is our job to train some of these people. They need to learn that these are our reports and we have a right to all the information.
I have experienced staff that really appreciate you asking for more detail and ones that say - no you can't read that. I suggest a very patronising attitude to the difficult ones where we explain to them that we understand that they are behind the times , but that they really need to do some more workplace education and learn patient's rights.Re the exercise - I don't think there is any doubt it is beneficial. Even from a lymphedoema point of view there is now a study showing reduced incidence in people who did weight training programs.
Saw the surgeon and my port is useless, can't be used - he offered to do another op to change the catheter to my neck vein, but since they couldn't get it right the first time think I might save the neck vein for carrying blood supply. So I will be trying to find veins in my arm for the next 4 chemos. The port will just sit there like a bit of body art till next year when I have the left MX.
On the bright side -it is day 14 and I fell GOOD. Never appreciated that before.
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Hi all - I want to dash off some quick thoughts and then jump off my computer.
Sending good vibes and calmness to all those about to get in the chair (if I list names, I'll get it all wrong!) This being my week BEFORE chemo, I'm feeling great and as someone else said I'm really appreciating that (it's the simple stuff in life, right?!)
Penny - so sorry to hear about your port outcome - ridiculous. I love my Mom but gosh she makes me batty with many of her comments. Recently she keeps saying with the chemo, I won't need any surgery afterwards. (I already know I need Mx but just let her say what she wants to believe...)
Timerdog - I think you should absolutely request another onc nurse. The last thing you need right now is to be exposed to a combative, unhelpful, inhumane "healthcare professional".
Maxine - Hope you are feeling less crappy than you were earlier. You sound like an awesome Mom -- remember that!
pasmith - I agree with mauimama's guidance. I also cut it short and it never came out in clumps per se but gosh it disappeared pretty quickly. If it had come out at my normal length, it would have felt much more traumatic I think.
jules - so glad your scalp is recovering. thanks for your comment re: daily 30 minute walk. you are inspiring me.
carberry - CONGRATULATIONS on having your surgery behind you -- so great! It's helpful to hear the chemo is harder because I'm already kicking that out (well, I'm 1/4 of the way through...) Thanks for your heartening perspective.
michelle67 - glad you phantom "uti" came and went. I had a day last week at treatment #2 where I said to myself "if I'm getting a uti on top of everything else, I'll scream" but it didn't materialize. Now it makes sense based on others comments.
supersally - thanks for your Tawanda! comment. Hadn't thought of that for a while. I almost named my first kitty cat Tawanda but then decided on Idgie instead -- LOVE that story.
Maria - I LOVE tiramisu and didn't know the translation -- very cool.
BTW, I so love everyone's quotes (those of you that have them). I'll need to give some thought and add one to my Dx line. Sweet dreams to all.
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Hey ladies....I was listening to my IPod while working out this morning and a good song for all of you came on so I am getting out my quarter for the juke box. The song is "5 O'Clock Somewhere" by Jimmy Buffet. Here is my favorite part of the song:
Pour me something tall and strong
Make it a hurricane
Before I go insane
It's only half past 12
But, I don't care
It's 5 o'clock somewhere
Well this lunch break is gonna take all afternoon
And half the night
Tomorrow morning I know there'll be hell to pay
Hey! But, that's all right
Ain't had a day off now in over a year
My Jamaican vacation's gonna start right here
If the phone's for me you can tell 'em I just sailed away and..Based on all of our experiences with health care providers with bad attitudes, I think we should come up with a sticker that says something like "stop being a jerk to someone with cancer" and just stick it on them when they do it. I can think of the nasty PA who told me it was too "inconvient" for their nurses to draw blood from my port each week (they will only use my arm....nice, hu?). I can also think of the nurse who said to me about the cold caps "well you know those just don't work for everyone so be prepared"...I am proud to go in next week on chemo day and have her see my full head of hair again. I can think of a few others I would like to put the sticker on. Another sticker idea would be: "Having cancer sucks, but you are making it suckier. Thanks a lot". I have been shocked at the attitude of some of the people I have encountered on my cancer journey and just how uncaring and insensitive they are. It has been disappointing. When I talk to my sister (chemo infusion nurse) and best friend (nurse for a surgical oncologist that only does breast cancer) they are just appauled at the treatment I have gotten and just can't believe people would do such things.
Carberry: I am so glad to hear surgery went well. I am wishing for you that those drains come out quickly! I know they can be a pain...I hope you continue to feel well and get stronger each day.
Penny: I am so sorry about the port...that is a huge bummer. I know how upset I was to get the port and then find out my office won't even draw blood from it. They will only use it for chemo...I can't imagine how you feel. I hope you can easily use the viens and have no issues.
Silia: I can tell you Italian swear words too if you want to know (LOL!). It's funny but when I started taking Italian lessons and learning the language a few years ago, I realized that my mom use to say a lot in Italian when we were kids that she should not have been saying.....now we swear in Italian in our house. I guess if our 4 year old says any of those words we will just say "oh, he's bilingual...he just said have a nice day"....LOL! Here's a word we all should know in Italiano...."bella" which means beautiful...because you are all beautiful!!!
I too am appreciating a chemo free week and how good I feel.......next week I am in the chair. I am glad though that my best friend told me today she is coming to be our cold cap helper on my last chemo! I am so excited. She lives 5 hours away and the last time I saw her was when I got discharged from the hospital from my BLMX. She came and took care of me for a few days post surgery (nothing like having a breast surgeon nurse come care for you...yes, I realize how lucky I am!!!). I am so excited to hang with her for a few days!! What a way to end chemo!
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I would boldly like to suggest the lead song on our jukebox or even our theme song.
LEAN ON ME by Bill Withers.
Lean on me when you're not strong
And i'll be your friend
I'll help you carry on
For it won't be long
Til I'm gonna need
Somebody to lean on.
Look up the lyrics-it was pretty inbelievable. I went to work to visit on Monday-while I still have hair-and it was a disaster. I have not been there since Feb 22 when I went out for knee surgery. I went thru the front door-started smelling transmission fluid and hearing machinery running and I just starting bawling. I don't mean tears leaking-I mean bawling-all the sound effects, snot, hiccups. This was before i ever saw a person... I ran back out to my car-thought i had it together-tried again. It was even worse.
I have barely shed a tear thru this whole thing (exception would be when they told me about mets). This came out of nowhere for me. i hate to cry-it doesn't fix anything and it definitely doesn't fix anything. No way was i ever going to make it back to my dept if just smelling the place did that to me.
Anyway, i decided it wasn't going to happen so i left and when I turned the car on that song by Bill Withers came on-so of course I started bawling again. The whole song was SO what goes on here.
So I have been reading what all I have missed-seems like i wasn't the only one on cry-time. Humour and sarcasm have always been my mechanisms- and I will bounce back. Just like all of us do.
Keep the faith my girls and remember what the Mar 2010 lady said-the year will go by so fast and we will be encouraging next years memebers
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Lean on me!! That's a phenomenal song and reminds me of childhood -- sigh..... I second the suggestion that we formally adopt it as our theme song!
lilylady, I think it was a sign that work is the last thing you need to think about right now. Take care of yourself. I'm hoping the sobbing felt therapeutic.
Maria - It's awesome that your best friend is a breast surg nurse. You so deserve star treatment.
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Lily: SO sorry about today. I wish at times like this that we were closer! You are lucky you are not a cryer...I am. I have cried in front of every doc I think....I cry here, cry there....I am finally to a place where I don't cry much daily anymore. I hate being so emotional...I don't know how you do it! Maybe I can learn from you! Lean on Me is a great song...so appropriate for our warm lounge. I hope you have a better day tomorrow. HUGS!!!
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Good evening ladies,
My nose is bothering me.....its not that i have a flat nose hahahaha....well you know us being a filipino (short in nose department lol) oh geesh.....my nose has been bleeding since this morning.....I hate it when I called the nurse and told me I had to go to the ER to have it frozen or something....I just dont want to go and drag myself and my baby to the hospital.....I am just hoping it will get better.....and besides dont want to miss watching American IDOL lolz.......did you experience nose bleeding? what did you do.......:(
@ Maria, you mentioned about you crying in front of every doctor.......it reminds me when the surgeon told us (with my dh) that I am on stage 4 already because the cancer has spread to my liver and bones......he was looking at me.....waiting for me to tell something and probably thought I would break down......for some reason I couldn't cry......up to this time I haven't cry......weird it seems but I am looking forward to that day that I finally will......=))
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sweet angel - I had some nose bleeding after chemo #1. It has improved as I approach chemo #2.
I found it helpful to hose out my sinuses with a warm saline solution using a neti pot. The saline helps to moisturize the sinus tissue and aids healing.
You can find a simple kit at the drug store. They carry this brand at Shopper's in ON: http://www.neilmed.com/usa/adword_np.php . Alternatively, you can find instructions on how to make a basic saline solution yourself and even videos on how to effectively rinse your sinuses.
The only thing I would add is that I never got to a point of bleeding prolifically. That is, I have not had blood pouring out my nose. If you are experiencing serious nose bleeds, it might be a good idea to ask your nurse if rinsing with saline would be ok before you try it.0 -
Put me on the list of criers! I cry when I look at my daughter, I cried because I was so cold at chemo the other day. I cried, and cried and cried over this damn cancer, I'm crying now!
Lilylady, I LOVE that song!
Yesterday I went to my daughter's 1st reconcilation, ( can't spell these days ) it was great. I worked at her school before before this cancer and it was awesome to see the staff. I also looked pretty darn good with all the time I have been spending at the gym! LOL There are some perks to all of this crap.
I can't really asks for a different Oncology nurse, she is the only one! I will request my last chemo to be in Sudbury, they are really excellent there.
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Here's a song as you head to the chemo lounge or out to seize the day:
Come on And Ease on down, Ease on down the road
come on, Ease on down, Ease on down the road
don't you carry nothing that might be a load come on, Ease on down Ease on down, down the road
Come on ease on down, Ease on down the road(ease on down)
Come on
Ease on down, Ease on down the road(ease on down)
Don't you carry nothing that might be a load
Come on Ease on down, Ease on down, down the road
Pick your left foot up, when your right foots down
Come on lets keep moving and don't you lose the ground
You just keep on Keepin' on the road that you choose
Don't you give up walking cause you gave up shoes
Ease on down, Ease on down the road (come on)
Ease on down, Ease on down the road
Don't you carry nothing that might be a load
Come on Ease on down, Ease on down, down the road
Cause there may be times when you think you lost your mind
And the steps you're taking leave you three four steps behind
But the road you're walking might be long sometimes
You just keep on stepping and you'll be just fine (yeah)
Ease on down, Ease on down the road (ease on down)
Ease on down, Ease on down the road (ease on down)
Don't you carry nothing that might be a load
Come on Ease on down, Ease on down, down the....
For there may be times, when you wish you wasn't born
And you wake one morning just to find your courage gone
but you know that feeling only last a little while
you just stick with us we'll show you how to smile (yeah)
Get 'em up, goin' down (ease on down the road)
Get 'em up, goin' down (ease on down the road)
Get 'em up, goin' down(ease on down the road)
Get 'em up Get 'em up (ease on down the road)0 -
Lol - I only cry when people are nice to me, no problem at all if they are mean.
Great songs -definitely need a karaoke session wher ewe do the whole list.
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lilylady, so sorry about your visit. I am glad that song was on for you when you needed it though, and we are here for you to lean on. Great song.
penny: Ha! I only cry when people are nice to me, too.
pasmithx: i agree with Mauimama, it was much less traumatic for me to have the short hair falling out. I also agree that I wish the rest would fall out so it would look like I did it on purpose. The hair (stubble) on my crown is still pretty abundant!
mdg: I am thrilled for you that the cold caps are working! With all of those hours put into it, you deserve it.
chemo #3 this afternoon. I have a 50/50 mix of anxiety for feeling crappy/getting another done. I will be 3 down, 5 to go after that.
Good luck to all my Thursday chemo pals (I know cellomomof5 and colodisneylover are on my schedule and cocktail)!!
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Hi Ladies,
Sorry I haven't been on for a while, but Lilylady, I returned to work last Wednesday and I was fine until I got to my department. As soon as I walked in I said "I'm home" and I started tearing up. Oh well. I've had the same boss for 21 years and I felt like I had been away from home. I am listening to Lean on Me as I write this, it is a great song.
Carberry I'm glad the surgery went well for you
Penny, so sorry about the port. I know that it's no walk in the park.
Maria, so happy to hear you still have your hair. Good for you, I got the buzz cut on Saturday and have been wearing scarves and hats to work.
Tomorrow is my day in the chair, oh well. Ok you awesome ladies, have a great day and I'll be checking in over the weekend,
hugs, min
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Hi Ladies,
I'm checking in quickly. I have been sooo tired. I have been taking 1/2 a .5mg of Xanax every morning and night and have been sleeping all day! It truly sucks.
Sweetangel: Hugs and I hope you get some relief soon. I'm mistaken many times for Filipino and have lived there for a year (in a refugee camp :-)). I miss the water and islands at times (I'm orginally from Cambodia so I really really miss the tropics). I am waiting to cry too, unfortunately mine is stuck in my throat and chest, I wish it would all come out already as the tension is quite horrid.
Lily: Hugs, hugs. I'm sorry about your day. Lean on me always brings tears to my eyes. The first time I understood that song I was in 3rd grade and I was just mouthing the song when my teacher was balling. I paid more attention and realized that I understood enough english to "get" the song and cried with her. It truly is a great song.
I hope everyone is well today. Another day gone, another day closer to being done with chemo.
I have been quite spoiled the last 3 weeks, my mom have been here cooking and cleaning for me. Unfortunately she will be leaving tomorrow as next week will be New Year's for us (Theravada Buddhists). I know not every one shares my faith, but I hope no one minds that my family and I will send prayers and good wishes through our ancestors for everyone here
I will be thinking of you ladies kim
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dizzyakira-thanks so much for putting us on your prayer list. it is so odd that you said today you are Buddhist-someone asked me today if i believed in prayer-when I said i not only believed in it I think I have a direct line to the Creator because I am on so many prayer lists...I told her I wish i knew someone of the Buddist faith because i think that is the only religion that didn't have me on their lists. Now I know i am completely covered. I am going to look up Thervada to see what that means.
I have never been very religious or even strong in my faith but I am learning along with so many other cancer lessons-never discount what you can't actually touch or see. Feelings, emotion and faith have moved many a mountain-or cured what was thought to be hopeless. All of you-my special cancer friends-drift thru my mind when i have these nightly sessions of sleeplessness-and I talk to God and ask him why and ask him please and beg him to help all of us.
This is way different than I usually post but my weepiness (hopefully chemo induced) has made me really introspective this week. Holy crap-- if the smell of transmission fluid moved me to tears imagine what conversations with God are doing to me.
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Must be the week for tears. I haven't cried at all, but all day yesterday and today I have been crying. I don't even know why. I have been at work except for the days I have chemo and was just exhausted yesterday and today. I'm sure that had a lot to do with it. Also, not sleeping well and the doc left me a message to call back which I did, but am stll waiting on advice about that. That kind of got to me that she's not being responsive. Also, so busy at work. They want their reports when they're due. I understand, but I just can't do it. I'm working way too hard. I hope I'm not doing anything that could really be detrimental to me. And I have almost no hair on my head.
Any way, love the songs. I agree on Lean on Me for the theme. You all are great help.
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MaxineO - thanks - yes, three down! (Although I really don't feel "done" with a round until I've gotten through the first week after, but still). Hope you weathered this one ok.
I had one of those frustrating hurry-up-and-wait mornings where everything was so backed up and we spent so many hours waiting. No chemo chairs available by the time they finally called me, so I ended up on a bed back in the isolation chemo ward. Ah well, what's done is done, right? Minor complaints, relatively speaking.
Good luck to those heading to the chairs tomorrow (Friday).
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kay-from-philly - I found that after taking it a bit easy to begin with I have slipped back into long days and am tired even late in the cycle. I must get back to resting more, its easier for me in some ways as its my own business, but it is important as the tiredness is probably bad for us physically and definitely makes it harder to cope emotionally.
dizzyakira - thanks for the prayers for all of us.
I have never really been a believer but have had so many wonderful people sending me prayers you start to think. My mum says she has asked all the little flowers in her garden to send me a prayer each??This was from a friend of mine :
"As an athiest, I been praying really hard for you; I'd say harder than most believers. Also had a chat with Buddha, Mohomad, Abraham, Gaia and a few other prophets and go betweens.
I didn't want this praying screwed up just because of a technicality"MaxineO - hope it went well, one more done now.
Maria - Hopefully the cold caps effort is going to keep working - thats brilliant, it great to feel like you can take control of something in all this.
Its interesting how the hair stubble stays for ages after we have the chop - as if its taunting us "Maybe you didn't need to do this", but my head is now getting the shiny look so it was necessary.
Its not surprising we all have a good cry occasionally and its probably good for us. The key is to think of something to smile about after you've had a good cry so you can end up laughing instead of feeling empty.
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MaxineO and others in the chair today-I am really feeling it today, which is odd because previous treatments I have had have not hit me on the first day at all. I feel worse today than any day from any treatment so far. Another thing, the doctor is switching me from Taxotere to Taxol after I finish AC. He said there is new research coming out about side effects of it and they want to avoid the risk. I also had them decrease the drip on the Cytoxin to try to avoid the headaches. We'll see if it works.
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Min - I was just preparing to ask where you were so thanks for chiming in! Godspeed in the chair tomorrow.
Kim - Happy New Year to you and your Mom and thanks forthe prayers.
Speaking of crying, which many of us have been(!), my dp and I went out to eat tonight and I kept crying so we'd change the subject and the next subject would make me cry... Ugh... There's something in the air tonight... Lily, your mom's request of the flowers made me cry too - very sweet.
Sweetangel, I also use a neti pot though it's for sinuses not for nosebleeding. Hope your situation improves very soon.
I'm sure I had more comments. Sending hugs and all good wishes!0 -
Colodisney - hope the slower drip is a good thing. I will ask my omc about taxol
Instead after I'm done with AC. Thx for the heads up!0 -
Hi lounge lizards...I hope today finds you all well and one day closer to being done with this chemo crap. I am ready for the weekend. I am having my BC mentor over for dinner on Sat night (my BC mentor is a woman introduced herself to me in the waiting room of the cancer center way before my surgery because she "just knew" what I was going through because she went through it a year before. She has been so sweet.....emails me, calls me, had me over for lunch before my surgery....so she's like my BC mentor. I am so fortunate she came into my life! Ended up my surgery was scheduled exactly 1 year to date of her surgery....I do believe I was meant to meet her. I have not seen her since my surgery so it will be nice to have her over). Tomorrow I have my little one out of school so we can go on a play date and lunch with a friend and her little boy - after my workout at the gym in the morning. I am getting as ready as I can for chemo next week. The weeks in between go SO fast....darn! I hope everyone has a good and restful night!
Sweetangel: I am pretty sure I have cried enough for you and me (maybe a few others too!). Do you know how much Kleenex I have had to buy since my diagnosis???? National sales for tissues must be up due to my crying for God's sake! LOL!
Timerdog: Well we can't get together...can you imagine how much crying would happen between the two of us????
Maxine: Thanks for the cold cap encouragement. I do feel rather guilty being the only one in the lounge with hair..... I hope chemo went OK today and that you get through the next week with no SE's. Crossing fingers.......
Min: I was going to PM you..wondered where you were! I hope you did OK with chemo today....hope you feel even better in the coming days. Keep us posted!
Dizzy: I just wanted to thank you for the kind prayers. I want you all to know that I pray for all of you every night and ask for a cure for all of us. I too have gotten even more spiritual during this journey the past few months.....which is a good thing.
Lily: I am sorry you have been so weepy. This is SO MUCH to take in. I finally got to the place a few weeks ago where I didn't cry every day. I have not cried since last week come to think of it....wow, what an improvement for me! I hope you snap out of this but you know we will listen and dry your tears anytime girl! Hugs!!!
Kay: Sorry you are not sleeping. Did the doc give you something? Xanax is the only thing that worked for me...ambien did nothing and ativan did not give me restful sleep at all. I hope you get something so you can rest....lack of sleep will make you weepy too! Sweet dreams tonight!
Cellomom: So glad you have one more down! Yes!
Penny: Thanks for the cheers on the hair. It is about control.....It is working. I have shed a bit but nothing noticeable to anyone except me I guess. I still have a ful head of hair but feel like I should cover it up in the lounge. I will put on my ugly sleep cap that makes me look like a "cafeteria lady" in the lounge. My husband told me I looked like the Pillsberry Dough Boy with the sleep cap on....let me just tell you that it didn't go over well with me...I said "I don't appreciate the humor....I don't find any of this funny. The hat and hair jokes are off limits". I guess I was a bit tired and cranky last night when I let him have it!
Colodisneylover: I hope you feel better tomorrow. I too am worried that I will get zapped with side effects on the next chemo.....What side effects on taxotere is your doctor talking about? I am on taxotere.....just curious what he is worried about.
Silia: Just wanted to say "hey"!
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Colodisneylover and Maria, I'm on taxotere too, so I'd also like to know about the side effects your doctor is trying to avoid.
So many of you are having a bad week that I'm feeling a bit guilty today. Yesterday, temps in Tennesee were in the 70's and I felt so good that my DH and my 2 best friends loaded up our horses and went to the mountains for a day of trail riding. The dogwoods and wildflowers are blooming and it was spectacular. I'm trying to make the most of my ""good week", because next Tuesday will be treatment # 3 and I'll be down for the week.
Pollen is flying really bad, so I've been using my neti-pot regularly. I heard on TV that Knoxville is the worst city in the US for pollen, and I believe it.
As for crying, I've only done it 3 times. The first time is when my gynecologist called and said that the radiologist's report had come in, and I needed to see a surgeon for a biopsy. I had just received the letter in the mail about and hour earlier, but some how hearing her say it out loud brought it home. The second time was the night before I was to have a conference with my BS to discuss my biopsy results and the recommendations of the breast cancer board. I was so terrified about it, I locked myself in the bathroom and had an hour long snot slinging fit. The third time was the first time I showered after my surgery, and my DH was helping me dry off. I thought I looked so disgusting with the scars and drains, and all my husband could say was "why are you crying now?" He didn't understand how I felt about my body. I'm sure there will be more tears ahead, like all of you I have a long road before me.
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Good morning early birds...not too happy to be up this time of day, but yesterday was last steroid til next week and it was bound and determined to get me up at 4:00 a.m. Bad day yesterday with leg pain/numbness. Could hardly walk and was limping by evening, but improved by 10:30. Called onc nurse and trial nurse two days in a row-nothing can help the tingling now...just needs to work out of system (1-2 more days) but keep a daily record and they may reduce or eliminate Taxol next time. Geez. What to wish for? If it's working I need it but if I can't walk...So need to do more checking. Maybe with steroids out of system in next 24 hrs plus the glutimine I'm taking daily (which is anectdotal, but they recommended) I'll finally see some benefit. Also upping the pain meds a bit. I asked about B6 or 12, but it is not supported in their protocol so without more evidence they would not recommend.
Friday is port day for me. Hopefully clotbuster worked from last week and it will be uneventful.
As for crying, oh my goodness friends...I have always been a weeper and this journey has brought it out of the glass closet it has been very openly kept in for years. Both my mother and grandma were cryers, but I am the worst. The joke is I will cry at parades, Hallmark card commercials, supermarket openings, telling a touching story to someone, privately or before a large audience, etc. And it would be true. My brother-in-law teases me when I sit down to watch a show and have a box of Kleenex at the ready. "You PREPARE to cry?!" he says snidely. Well yes. Don't want to get up dripping across the room when the inevidible court scene, death scene, reunification scene, wedding scene, puppy scene, shows up!
Fortunately in job as school counselor I can detach and stay calm and be very in the moment without crying. But I sure shed a few tears later for some of the issues these kids face. As for my own tears with canser...I can't even begin to tell you. Daily or more at first. Every time I talked to doctor or called nurse, my mother, my sister. I feel weak when I do it and try to suck it up when I feel it coming on in important places, like with my boss. Anger helps hold it at bay and being prepared (writing stuff down) so I can look down and read it quick or hand it over. But I quit apologizing for it a long time ago. It isn't deliberate, it isn't manipulative (although others may feel that; that is never the intent to GET something from them), and I have found very little that helps. I also know that crying releases toxins, so have to think there is some benefit besides the snot-nosed, red-eyed, exhausted look that cn follow a serious jag of self-pity of late! As the weeks have passed, it has gotten better (more accepting I suppose on my part), but when we hit these stupid speed bumps (SE's, nasty comments, unsupportive friends/family, appointments being delayed/cancelled/forgotten, just plain exhaustion), down they trickle again. Stock in Kleenex must be good right now-I should check our portfolio!
Okay, gonna see if I can get another hour on the pillow before I really have to get up. Dear son has all day track meet today and I gotta get him to the bus by 7:30 and then head to work. Thinking it might be a short day, but we do get to wear jeans and I think it is supposed to be nice weather! So Happy Friday all. How about "Everybody's Workin' for the Weekend?" by 80's band Loverboy on the jukebox?
Everyone's watchin' to see what you will do
Everyone's lookin' at you, Oh
Everyone's wonderin' will you come out tonight
Everyone's tryin' to get it right, get it right
Everybody's workin' for the weekend
Everybody wants a new romance
Everybody's goin' off the deep end
Everybody needs a second chance, Oh
You want a piece of my heart
you better start from the start
you wanna be in the show
c'mon baby let's go
Everyone's lookin' to see if it was you
Everyone wants you to come through
Everyone's hopin' it'll all work out
Everyone's waiting to hold you out
Everybody's workin' for the weekend
Everybody wants a new romance, hey yeah
Everybody's goin' off the deep end
Everybody needs a second chance, Oh0 -
Jules, your little jaunt with your horses to the mountains to roam among the wildflowers and dogwood trees sounds heavenly! That is really good medicine for the soul. Yesterday in Ohio we had mild temps and I spent an hour in the backyard piddling around, trimming minor debris off some clematis vines and such. It felt wonderful to relax and know the long hard winter is behind us. DH cut the grass yesterday for the 1st time, love the smell of fresh-cut grass.
I tire more easily but the 1st week after chemo is my worst. In my second week here, I have a more positive outlook. One big thing that helps is reading supportive books on canser. I just finished Life after Cancer, some parts are very technical so I skimmed over them. I am also reading There's No Place Like Hope: a guide to beating canser in mind-sized bites. I also am getting the Chicken Soup book from the library for the canser survivors soul. I like to keep a steady diet of uplifting stuff in my brain to snack on when the chips are down.
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