Sept 2012 chemo
Comments
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Whenlife; I get the same thing at work too. I've started imagining having one of those Jim Carey, Liar Liar movie moments. So, when someone asks me how I'm feeling, standing next to the water cooler, I imagine myself responding, "Not too well actually. I've got really bad constipation, my boob hurts and I'm worried that I might die" and just waiting for their reaction. I'd never do that of course because it would be cruel, but it makes me want to laugh out loud.
I've realised that some of the colleagues who seem to be most concerned about me are the ones who have hypochondriac tendencies themselves. I think that they're scared that if this happened to me at age 37 without any of the apparent risk factors (yes, other than having breasts) that it could happen to them too. And it could.
I'm devouring books right now. Thank God for my Kindle. I find it difficult to concentrate on the TV but I can just lose myself in a novel. Any recommendations from anyone welcome.
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Whenlifegivesyoulemons,
That is the worst part you know. The prying eyes...looking like a cancer patient. At this point I just say f**k it because I have bandages over my port and it is so apparent that there is something wrong with me. At least if people assume cancer then tend to be naturally nicer. I hate that too though. I want people to be effing rude to me if they were going to be in the first place. But once they see my shaved head they assume cancer and they turn into fake nice people. I was in a Dunkin Donuts recently and this woman was glaring at me and my family (she didn't see my shaved head) because we were being a bit loud (but cmon it is Dunkin Donuts lol). I get up from the table, I see her still glaring then she looks over at me and gives me the biggest smile ever. I hate people like that!!!! GRRRRRRR If you were going to be a jerk to me before cancer, then be an effing jerk now. Me having cancer should not change how I am treated by people and yet it does. I know it sounds stupid. But even my students that I teach are 10X nicer than they would normally be because they know (I mean that is a benefit). But at the same time I just want to be treated like everyone else. And I think that is the worst part about all of this, is that I look like a cancer patient. I know I can handle anything that comes my way treatment wise but looking sick is the worst part. That is the thing I hate the most. I hate the eyes that are trained on me whenever I walk in the room....the awkward I want to stare but can't darting eyes. Sorry ladies, just needed to vent!!
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Justegan and English Rose, Give them a break. They do care. They just don't kmow what to do or say. Many years ago I worked closely with a young woman who had cancer. I wasn't sure. It looked like a bad fitting wig. But she never mentioned it and I didn't either. Many years later she died. I admired her and respected that she wanted no mention of it. But I think she missed some hugs.
When my husband had a heart attack and died suddenly, I called work and told the switchboard lady whom I knew what had happened and that I would not be in for the rest of the week.
Within three hours three colleagues were at my house taking in food from the neighbors, keeping notes, answering the phone and generally helping in so many ways I couldn't imagie.
Over the next year when I would meet someone in the hall I hadn't seen recently, they would look at me and say, "You OK?
How are the kids doing? Need any help?" They cared.
One gave me very good advice about getting psychiactric help for an older daughter.
So cut them some slack. They mean well and don't know how to show compassion. OK thy may fear for themselves also. A human characteristic. But they are part of your support network Smile. Tell them what you want and no more. And thank them for asking.
Grandma
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You have all shared some great stories and I appreciate them all. thanks for your honesty and willingness to "tell all". It has really helped me think through some of my own reactions and feelings.
Justegan - for the first time in nearly 20 years (when I was pregnant), I feel vulnerable, again. Not a good feeling. My scalp is still too tender for the wig and I feel terribly self-conscious when I do wear it. I prefer the feeling that I am in charge when I go into a room, but the loss of my hair seems to have dampened that. Something to work on, i guess.
Lemons - funny you should mention the news. I find that I can read nealy anything, but I cannot tolerate the news. It was on, one night last week, and they talked about new treatment for breast cancer and I nearly screamed at it. that was when I realized that I just needed to turn it off for awhile.
Cindi74 - Thanks for the advice. I have found that there are many people willing to help me, but i need to give them specific requests. One is making weekly trips to the library for me. Another is bringing small samples of whatever she is cooking, trying to help me find something palatable. A third just needs an hour's notice and she can get me to the doc, if my strength (or stomach) does not allow me to drive myself. I continue to be amazed at the people who send me cards and notes. i haven't been out in public without my hair, except to the clinic. It feels really strange and I have to think about it to keep my head up.
Sometimes, when we are weak, we just have to pretend that we are strong. eventually, even we will come to believe it.
(((hugs))) to all
Sherrie
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Cindi: You're absolutely right and I agree with everything that you say. I don't necessarily mind people asking, and in fact I'd probably be hurt if they didn't. I know that people ask because they care. I was just saying that with those people that I don't know very well, and in the context of the workplace, I don't feel comfortable giving them an honest answer. I've learnt alot about myself over the past few months and about others too. Some people who I wouldn't have expected to have really come through for me, and others who I thought I was close to have let me down a bit. I suppose I just find human behaviour infinitely fascinating, more so when challenging circumstances are involved.
I think that all of us too might have irrational, angry moments while we're going through this and I think this forum is a good place for us all to be able to share freely how we feel, in a place where other people will truly understand, so that we don't take out our feelings on those around us who are trying to offer their support. But your words are a good reminder to be as tolerant as we can and assume the best of the people around us.
On a more positive note, I just wanted to say that I've been thinking this morning how much I love my life and how lucky I am. Really. I have a great family, two beautiful daughters, lovely friends, I enjoy my work which gives me the opportunity to help others and make the world a better place, I have everything and more than I need materially, I live in a nice place and have a pretty privileged existence. I used to find that I was always wanting more, thinking about the next step, the next challenge, where I was going and not where I am today. If there's any silver lining to this cancer, it's that it's made me just breathe and appreciate everything and everyone a bit more. I'm intending to live to a ripe old age and I'll remember this time if I ever feel myself slipping back in to my old ways.
That's the end of my thoughtful and philosophical moment of the day!
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Cindi-
You're absolutely right, they don't know what to do, and they do mean well. Early on I had a random receptionist at one of the clinics I go to try to reach across her desk to hug me. But, that's not what I want. I don't want the world to hug me. I want my peeps to hug me. My family, my friends, the people close to me. That line is what gives me control over my emotions, and having that control is what lets me get dressed and go work every day. Feeling vulnerable in the workplace, every day, is, well, simply exhausting. And I need to not feel that way, because I have "other" things to worry about. I've often thought about the fact that I'm missing out on hugs, and well wishes, but I decided I would happily trade that to turn off the 24x7 cancer station in my head when I'm at work, and out in the world, and so that's how I cope - keeping my cancer private where I can so I can have some sense of normalcy and feel in control. I guess we all have our hangups with how this happens to us, what bothers us, and we find our different ways to cope. All that matters is that we do what we need to get through this, right? And sometimes some of us do want to punch that random receptionist for getting in our business because of how we look, or knowing about our diagnosis (and if we ever met you'd realize right away I don't have it in me to do anything remotely like that).
That said, I'm sure it wouldn't hurt for me to explore this more with a therapist. But that would mean I'd need to go to therapy, and that's almost as scary to me as cancer!
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Whenlife, and my husband and I love your handle, do what feels right for you. You don't have to share with those you don't want to. Work is work. Let the peeps do the hugging when your WBC are normal. I am so lucky I am retired and don't have to worry about work and insurance. I don't know how you manage. I just don't think you or I have the time or energy to be angry at anything except cancer. I was saying "cut them some slack." Rage with us. Tell us. We understand. Many of them won't. You have been dealt a bad hand. You are doing great. Hold in there.
You are getting the Taxol first and then A/C. I am having the A/C first and then Taxol. We are both Stage II (I may be A, am not sure) I am ER+ but PR and HER2-. My wierd cancer was through one of 2 of 7 nodes, so the Oncologist is after the cells wandering around my body looking for a home in brain or bones, liver or colon. Bone Scan, MRI and Catscan couldn't find any, but my stringy, no hard lumps kind is especially hard to find.
Oh well. Can I send you a text hug? Have a good day at work. Wear your wig proudly. We are SuperWomen. We can do this.
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I love reading everyone's comments. They speak to me as well. It's interesting to see how friends around us react. Some take it hard and want to help in any way. Some are off the grid because I don't think they know what to say so they just say nothing. I have a prior supervisor ( I stay home now) but she's home now and has really come to my aid. She's taking me to my shot and has brought me meds or groceries. To me that's true friendship. It's teaching me how to be there for others down the road. Before now I may not have acted appropriately myself.
My poor husband is an introvert and is making me a lil crazy. He just does not express himself. Never has but now I need his emotional support. I feel like he handles me with kid gloves. Like I'm toxic. I don't know how to change it. He does anything for me I ask. I know he just doesn't have the words and in his own way is afraid. I just want this to draw us together not apart. We've been married 16 great years and been blessed.
I am obsessed with planning a great family trip for next year. Something like all inclusive Jamaica Bahamas Mexico? Anyone with ideas let me know. I want to focus on planning something fun for our family to celebrate after a rough year. That will keep me going! Took my drugs today and resting before I get my shot at one. Have a blessed day!
Becki -
Justegan - I say this all the time! I really do just want to be treated like everyone else. In fact, everyone being nice is how I knew there was something really wrong before I was diagnosed. I went for a mammogram, and then the radiologist saw the results and did the biopsy right away. She spent a lot of time with me, and then gave me her cell phone number. And I was like, Shit!! Of course, this swings both ways -- the one way I do want special treatment (a seat on the subway, please!) I don't get it.
The hair started coming out yesterday morning. I've been waiting for it for a while, but it's still shocking. I'm getting it buzzed tomorrow. What number on the clippers did you guys get? 1 or 2?
Hope everyone has a good day.
xoxo -
Good Morning! I find myself back in bed resting before I try and start my day again. #3 kicked my butt, first the emotional mess I was on Wednesday and then so tired I could not think about anything but sleeping yesterday. Tonight we are having people over to 'celebrate' my birthday....I just need to get motivated.
Jojo - thank you for the birthday cake! All, thank you for the birthday wishes! What a weird way to spend my birthday but I am going to give it hell!
Thanks to all for the amazing stories....it really means a lot that everyone has a place to share and / or vent
Everyone getting treatment today good luck! Wishing all a weekend full of no SEs.
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Good morning sisters......
People will never know what we go through mentally and phisically.....i have learned that people do not know how to react and actually i feel bad for them because they feel more sick then we do.....im really happy..........not happy that i have cancer but happy that
God gave me the strength to fight and the power to win........I take advantage of it....i got my tempurpidiuc bed...didnt have to pay taxes because i have "cancer"...i swam with the dolphins for free because i have "cancer" i got free hair cuts becasue i have "cancer".....i get extra spoil by my family because i have "cancer".....free dinners and lunches by friends because i have "cancer".....lmao........ So sisters dont worry be happy!!!!!!!!!....getting ready for chemoland on the 10th im so ready....bring it on im gonna rock the BGC....because i can!!!!!!!!!!Neulasta shot i hated you them and i will hate you now....this time i will not take your pain i got all my med ready for U!!!!!!!
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Cindi - I gladly accept hugs from all of you who know so well about the ups and downs of all of this. You are so positive, wish I could channel some of that for those days when I get angry.
Timbek - We should ALL be planning that vacation. Feels like life is standing still, or passing us by if we don't. Hope your hubby comes around. It's so hard having this happen to myself that I sometimes forget that it's so hard, but in a different way, for those who love us most.
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Patricia- You're right. There have been a few upsides. I should focus more on them.
Here's my biggest cancer upside so far: my work is building me an office, because I have cancer. How awesome is that!? A door I can close when I'm having a bad day.
Anyone else have some cancer silver lining stories to share?
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Jojo, my MO does not automatically do the Neulasta (or neupogen) shots with Taxol so I have 5 sessions of Taxol down with no shot. If I do need one (my neturophils are at 2.2, 1.5 or lower and you get the shot), it will be neupogen because it is shorter acting than the Neulasta. Or do I have that backwards from chemo-brain? I'll get whichever is the shorter acting.
It's weird regarding the stares, I usually give them a smile and then move on. If they are uncomfortable and then look away, oh well. Some people won't look or smile and I consider that they maybe lost someone to cancer or have someone going through treatment and it's difficult for them or whatever, it's not my job to worry about that one. Yesterday, a lady with lots of little kids at the same function I was, could not stop looking at me and fake smiling. I just ignored her. It was so ridiculous! and it didn't really make me "feel" one way or the other except maybe a little ambarrassed for her. oh well. And then there are the survivors who are almost always easy to identify by the look they give. I don't know, overall I think I give people a lot of leeway to stare or not to stare and whatever because I have no idea what their experience with cancer may or may not be while at the same time I am not in any state to protect someone else's emotions about all this. If I only wear scarves and hats and it's obvious I'm a chemo patient, well, tough shit. It happens. Deal with it or don't, it's not my problem. Similarly with questions, I just answer what I care to answer, if it's TMI, too bad or if I hold back, too bad also. I have taken off my scarf and gone bald when some teeneage girls were staring and whispering though...
I guess I care enough that they see this or see more of us if they've already experienced it. -
I am finally feeling better- yeah! a week and a half until I feel like crap again. For those with pain after neulasta- on my first cycle I did not use Claritin, because I was already on Zyrtec and hoped it would be the same. When I got my bone pain it was so bad I coudn't even walk most of 1 day and I cried a bit too. This last cycle I started Claritin the day before chemo and continued for an entire week. I also used Glutamine powder in my morning smoothie along with my protein powder, and I had 2 aleve 2x a day for almost a week (per my onc's orders) and you know what- I was a little achey but it wasn't terrible at all, I didn't have to take any additional pain relievers or anything. YEAH!!!
I threw a tantrum at my plastic surgeons office the other day. Since finding out that I will need radiation after chemo I have been trying to figure out the timing of everything and basically I am screwed. I was hoping this entire ordeal would be over 1 yr from diagnosis. It wont. Instead of having my TE taken out in the early spring I get to keep it until next AUGUST!!! because PS won't touch me for 6 months after RADS. I threw a fit. I don't want this weird hard uncomfortable piece of crap inside me for an entire year. That wasn't how this was supposed to work
no!no!no! And I am sick on not having any say in any of this. I know it isn't the PS's fault- it is cancers fault but I am still pissed. I was in a really dark place earlier this week- I think I am starting to feel better about it but I am still pretty unhappy. -
Oh and I forgot to add to the conversation about being stared at:
the day I had my tantrum at the plastic surgeons office, I went to Costco afterward with my mom to do some shopping. That day I wasn't wearing my wig (I was too sweaty- anyone else dealing with crazy amounts of sweatyness????) but I had a scarf on. Most people are just extra nice to me, a few extra looks but nothing too terrible, but at the checkout a lady came up to me and told me good luck, my friend is fighting the fight too, you look sooooo beautiful, bla bla bla. She was so nice to me, and I was nice to but I wanted to scream- THANK YOU FOR REMINDING ME I HAVE CANCER PATIENT WRITTEN ACROSS MY FOREHEAD!!!
Whenlifegivesyoulemons- seriously? you got an OFFICE out of it? SWEET!
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@Damiana...lmao.....you dont have it writting on your forhead its in OUR bald head!!!!lmao.....
@Whegiveyou...office......you got it better then me........no office just smiles!!!lol
My sisters ....this morning was fun writting everyone...
So any one doing any walks this month i volunteer for KOMAN....i made my tshirts...which is a a bra with pinkys promising each other....My daughter and i have always pinky promise when we had to really trust each other and made sure neither one was lying and there was nothing that would pull us apart..... so our team is pinky promise with our own logo which is awesome i wll make some changes to the image ...then i will post it here.....i pinky promise my daughter that I WILL SURVIVE......and that i am a warrior........!!!! ladies lets make that walk ............
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I think that is what I fear the most, having cancer patient stamped on my head...i don't want people staring at me or being nice because I have cancer. Going to get more cut off my hair this weekend, already cut 10 inches off, going to go shorter since I have about a week before I start to lose it....
I hope everyone has a good weekend!
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I am getting a free cruise paid for by my sister when all this is over. It's so ironic cause she is super cheap and would never have considered paying for me a cruise before CANCER. But - I will take it!
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Sitting at the airport waiting for my first flight, praying my nose doesn't start bleeding again and wishing my eye would stop twitching. Few snow flurries this morning, first time I have ever seen snow on my birthday. In Ohio is has never snowed this early.
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Kidsandlabs - Welcome to my world. Thankfully it didn't snow yet in Minneapolis, but there are rumors of flurries later today. I remember many Halloweens wearing coats UNDER costumes. But evenso I do love it here. Enjoy sleeping in your own bed tonight.
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butterfly14; I don't think your mom should have said that. Perhaps she was trying to help and give you some fight but losing our hair, makes us so vulnerable and makes it impossible to have those occasional moments in denial and believe that we are not really going thru all this. Losing my hair has been the absolute worst part so far; I'm embarrassed in front of my husband and my son even though they seem to just know that this will pass. I'm doing my best to keep my chin up but when you turn around in the grocery store and see someone staring, it is very, very, very hard to feel like a warrior.
Do whatever you need to do to find some peaceful moments and let people know that it is not OK to say things that make you feel bad!
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My sisters....a bought 1000 piece puzzle....so far very fun for the brain!!!!
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Jojo.. No neulasta for me either once on Taxol... Whoooo Hoooo! My MO says that the one chemo instead of two doesnt lower your WBC much so I wont be needing it! That is fabulous news to me.....
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Jojo - no neulasta for me once I go to Taxol either....one more AC treatment on the 17th and shot on the 18th and I will be happy that is behind me. Nice on the cruise!!
Kidsandlabs - happy birthday! I hope you are headed home for the weekend!
Damania - I totally hear you...I am not getting rads but I talked to my MO who said my WBC was good and I could continue my fills but my PS said no...why no, who is in charge of my body - obviously not me? I don't know why he said no but I was so depressed, part of Wednesday's meltdown. I have a 90 day wait after chemo and these TE's are horrible and the thought of keeping them until May, for me, is hard enough to think about - I seriously understand and hate you will have longer than I for the exchange process.
Whenlife - an office is fantastic! I love that your office is thinking of you during this time!
Patricia - a puzzle is a great idea! It would be good to fill the time when reading and TV are just not of interest!
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Terri07-11, I'm sure she was trying to be supportive, but I am like you, I don't want anyone to see me bald. My husband and boys are extremely supportive, but I feel embarrassed about losing my hair, and it'snot even gone yet. I have nightmares about losing my hair, and cry when I think about it.
I try to be positive, and take it all in stride, just having a real issue with the hair.
I hope you have a great weekend.
Carla
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Butterfly, Your hair will come back. Use a cap or a wig to cover. Your hair is not you. Your soul is you, and that is what sons and hubby are concentrating on now. You are loved for you. The last way you need to feel is embarassed. We feel that way when we have done something wrong, and you have done nothing wrong. You are Wonderwoman. loved, and going through a tough time. You will get through it. You will.
Be good to yourself. Drink a cup of tea. Let husband do a massage. Great for the soul.
For the first time in my life I have a high forehead. I like it. Bought some sleep caps from headcoverings.com Like the caps but did't like the caps which had to be tied in the back with a trailing tail. Fortunately, a lady cleaning for me this afternoon wanted those two. So I ordered some more caps from a diffeent shop. These are cheaper too from Topsyturban, The caps and wig will get me through this. You too.
Hugs
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An office, a cruise, swimming with dolphins! That's awesome! I got to borrow a boat for waterskiing and tubing all summer from our neighbours! Not that I skied much, surgery and all, but my family and friends loved it. Make he most of it ladies. I have come to realize that the people who have the hardest time dealing with me having cancer are the ones who feel the most fearful an threatened. It's still sad when someone you thought you cold rely on pulls away from you but I think I understand why. Having said that, some people I didn't expect have come forward and amazed me! These friends are the ones that stepped in and said "I'll take you. Just say when I should pick you up" when my husband couldnt come for my MO appointment, and the friend who organized a bunch of my other friends to cook a dinner each for a few days after each treatment and the one who keeps texting to see if I feel like a walk or a cup of tea and if not she will just check in again the next day, or the friends
who have helped with my kids when Ive needed it. I will be sure to do practical things like that if any of my friends ever needs it. I don't think I will bother with the card an the pity.
Timbek, my family and I went to Riviera Maya in March this year and stayed at the Barcelo Maya (huge place, 3 separate hotels in one complex). It's an all inclusive so you get buffet food and drinks on tap. Not for everyone but with the kids it was great, the beach was beautiful, lots of things to do both at the hotel and in the area. We got a great deal on it and ended up being upgraded on arrival! Check it out.
Did my 3rd TC today and feelng ok but a little tired. -
Terri07 & Carla - this too shall pass. I shaved my head on day 14, this is day 25, and my eyes still fill with tears sometimes over my hair, and having to face the world with my bald head. Being so vulnerable, having my illness be out there for everyone to see is so hard, I am usually confident and strong. But it is getting better. And I smile when someone is kind (like that waitress I mentioned earlier), and also learning to smile when someone is stupid (haha). Good lesson!
Englishrose - I have a kindle too, and a bunch of books, if you're into thrillers, espionage (I wanted to be a spy as a child), or historical romance (Outlander?) and a bunch of miscellaneous stuff, and if you (or anyone else) is interested, PM me with your email and I will "loan" you a kindle book - they can only be loaned once, and only for two weeks, but hey, it's there if anyone wants!
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Cindy74 and shockd2behre,
Thank you for the positives. Cindy you are right, I don't know why I feel embarrassed, I have done nothing wrong, but it's the fear I have. I am going to check out the websites you shared and see what I can find.
Have a great weekend!
Carla
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