Starting chemo July 2014
Comments
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Coyote - these are so beautiful. Very inspiring. I love the idea of this group all paying forward to each other in whatever way we can...hats, bracelets, blessings, love.
I would be proud to wear one of your bracelets. And I understand pay it forward, but wonder if there is a charity donation I could make in return?
Wrist is 6" and I LOVE the purple and the silver.
I'm sorry to hear about everyone's family stuff. It's just life isn't it?
One thing I have learned from this journey so far is who my real friends and family are. It sounds like such a cliche, but it's true. There is a whole ocean separating the people I have known my whole life who haven't called even once and those relatively recent friends who have dropped everything to be 'on call'. I have been brought to tears both by callousness where I expected love and by love and generosity where I expected nothing.
Weird, surprising and kind of wonderful all at once.
As an update, I am much more balanced today. Keep strong, look forward and really hope I can have my treatment on Friday or failing that on Monday.
Chaos - keep us updated with your treatment plan. We are thinking of you.
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Pinkinjay - My red blood cells have dropped below normal after just 2 chemos - my next is this Thursday. I was going to ask for B12 to be added to the chemo mix. Did your doctor mention B12 at all?
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Chaos -- you and I are on a similar treatment plan, though mine is longer. I'm supposed to do AC, Taxol/herceptin, surgery, radiation/herceptin. I have a feeling that even though the chemo has shrunk my tumor some that I will end up with a mastectomy as well.
Coyote -- your bracelets are beautiful! Alas, I don't wear jewelry, but I think you'll have enough takers from the ladies on this board!
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Coyote, that is so awesome! I did a little pay it forward too with some brand new post surgery tops that I donated to our local cancer center. The bracelets are lovely. I love the silver or pink one. My wrist is closer to an 8 inch, if that is ok.
It's funny how you find out who your real friends are once you get cancer. People say "if there's anything I can do..." and then you never hear from or see them again. I don't know if they are uncomfortable with illness or what. I'm still me, I still laugh and try to find some good in everyone but it is very hard sometimes.
I completely agree with the caregiver personality and high stress being contributors to bc. And Mags, I'm becoming a hermit too. I am not working right now so it is really easy to stay homebound. Thank God for you wonderful ladies, I know I'm not alone. Tomorrow is round 2 so getting geared up for it. On a gross tmi note my hair started falling out yesterday but is sure wasn't the hair on my head (think free Brazilian). Good golly there was enough hair in the shower it looked like a small hamster...gross! And yes I have drippy nose too. It's got to be the chemo as I am not sick and still have my nose hairs. I feel sorry for my DH. I'm a mess!
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Chaos - I don't know the details of your cancer, but want to reassure there are many of us that have Grade 3 cancer meaning it's aggressive....and have been told that we have a good prognosis.
I don't think you should feel that recurrence is a definite b/c you have Grade 3 (aggrsssive) cancer. I see that you are ER+ so TAmoxifen and/or aromatase inhibitors will also help prevent recurrence.
And not to make those that are getting radiation scared, because it's not a common side effect...but radiation can cause lung cancer years later....just trying to point out a positive for you
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Hello Ladies
I have read the stories of friends and family and disappointments... We all have it somewhere in our lives but we are strong and move beyond things ... at least now... What is most important is our health and well being... so that we can live for ourselves and those who love and appreciate us. We have one life to live... we watch people leave our lives everyday... we are meant to smile feel happiness and love unconditionally... Our bodies spirit and mind is most important... take care of you ♥♥♥
On another note... I was wondering if anyone else has watery swollen, sagging eyes... my nose is running from lack of nose hairs as well but for the past two days my eyes are running and swollen and my eyelids look droopy... does anyone else have this.. its almost like im losing the elasticity in my face
I see 3 lines my my mouth on both sides that werent there before and this bothers me very much... Its enough to go through all of this but I dont want to come out on the other side looking 20 years older Tomorrow is round 3 for me of dense dose AC... I love the bracelets
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I came home to find my computer having spasms. If You don't see me for a couple days, that's why. It's hard for me to read the posts on my phone, so please put the bracelet info in a pm. BTW: I'm feeling good today! Yeah!
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All this talk of disappointments has made me stop and take a look at my situation. Some of the folks I considered my closest friends have been largely absent, but other folks have come through amazingly in totally unexpected ways.
My take on it us that some people have the capacity to be a giver and a caretaker, and some don't. I'm not thrilled that my "best friend" maybe checks in with me once a month, and it's certainly changed our relationship and the way I feel about her, and not for the better. On the other hand, the opposite has happened with the unexpected folks that have turned out to be so caring and supportive that rather than being angry and feeling as though I've lost something or been treated with less care than I should, I've taken to seeing it as a shift towards the people who really matter and care and are there for me in the way that I will always be there for them. I've gained at least as much as I've lost, and really I think I'm probably coming out ahead.
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blow away, she didn't mention b12 shots, I go in today to have blood drawn so we'll see f it's better.
This second round has been easier than the first but I'm having the nuclear D still. I just took more Immodium so hopefully it will help soon. I'm fatigued though which is why I haven't been on here too much.
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JenKay and RainDew, that is a very good way of looking at it. Not a loss really, a gain.
JoeysMommy, you could have an eye infection starting? I would have eye doc check it out just in case.
Hugs to you Chaos and PinkNinja and anyone else having a tough time.
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JoeysMommy -- my eyes aren't watery, but they have been twitching more, if that means anything. My eyes have twitched in the past, but mostly because I've been tired.
I haven't really been disappointed by the responses of friends/relatives to my illness. I think the hardest thing for me has been accepting the help that has been offered. A friend has organized an online help site where others can sign up to volunteer to help me out. For example, every weekend, someone comes by and drops off food for my sons' lunch boxes (they start school next Wednesday and because of their autism, they eat the same thing every day). My husband finds the website ladies kind-of annoying, but I keep reminding him that we really will need help, especially on Wednesdays, which is chemo day for me, a busy softball day for my daughter, and a day where DH teaches late into the night. I guess we've always been a self-sufficient family, and now we have to accept that we can't always manage our own affairs by ourselves.
Hope everyone has minimal SEs today! I will be in the office, so it's an-all day, wig day.
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Hi, Elaine
I've noticed you've mentioned your children a couple of times. I just wanted to say 'hi'. I'm a secondary Special Education teacher. The high school where I am currently has an Autism Spectrum Disorder program, for which I am responsible. I actually don't have a teaching timetable, as this program takes all of my time (sometimes I spend more time liaising with parents than I do with students ;-). We typically have about 13 students in the program and all are pretty much full integrated in a full rotary program (some with lots of support, of course). How old are your kids?
Just wanted to connect with our common thread...and hoping the kids have a smooth and uneventful transition back to school...
N
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Elainethere - My right eye has been twitching a lot - thank you for posting that - I thought it was just me!
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Chaosrains - just a funny side note to your earlier post - My little brother told his boss that our mother died and he needed a few days off. Unbeknownst to him, my mom just happened to call him at work during his mini vacation and when he got back, he was fired! What goes around, comes back around....
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By the way, tomorrow is chemo day for me also and I see that I am in lovely company. Good luck to us all tomorrow!
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Mumford --
My sons (twins) are 11, and are part of an autism program that is at an elementary school (they stayed back a year or so). They do spend 40-50% of their day with "neurotypical" children, but they have significant academic deficits (a.k.a. -- intellectually disabilities -- they are not college material). I actually feel blessed that their behavioral issues are mild -- they are well-behaved in public and can fly, go out to eat, visit museums, etc., with few difficulties. We also have activities that we enjoy doing together -- scootering and swimming. But, we worry about their futures -- we think they can get jobs and the like, but they will always have support systems in place. My partner and I have been saving money for a "special needs" trust fund so that when we are gone, our daughter won't have to be financially responsible for their well-being.
Looking forward to them going back to school -- I think they like the structure!
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Good afternoon ladies. I am very shaky today, from the steroids I'm guessing. And a bit of chemo brain, so forgive me if I miss anything. Somehow in the next two hours I have to pull myself together enough to go get my Neulasta shot.
Watery, puffy eyes: I had this most of the last week, and boy is it annoying! Talked to MO about it and he chalks it up to water retention, though I have no other swelling. Runny nose, too, though I don't seem to be losing nose hairs either.
Pinkninja, I was having the same D problem, MO switched me from OTC Imodium to rx lomotil and that did the trick. Now I feel better prepared for next week.
I signed up for our next Look Good Feel Better class which is the night before my last chemo. I signed up for an earlier one but didn't make it because it was day 7 of the first round. Nuff said?
Coyote, I will have to find a measuring tape somewhere to measure my wrist, but I love all of them. I'm especially fond of the bright blue, and I will happily wait for the next batch, so you should fill the other requests first. Let me know when it's ready, I'll PM you my address.
Maidentired, did you know that there is a thread for Hermits? It's my other home in this forum. You can usually find it in Active Posts. We have some stage 4 ladies there and they are very supportive and loving. Some like me have always had the tendency, but some from BC as well. It's less of a BC-specific thread, though if I share a concern they are quick with solutions, but it's mostly how we're living our lives. Come join us there!
ChaosRains, I hate that you fell into a pit. I'm so familiar with that feeling and hope you will take a turn for the better.
Wednesday chemo gals, you're in my thoughts today. Wishing you excellent blood results and an easy infusion.
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Oh, Coyote, the braclet's are just lovely! Would love silver/pearl and black as I wear a lot of greys/blacks and also browns. I would be proud to wear one as I still consider myself as part of the July 2014 group too :-). My wrist is 6.5" and happy with a bit of a drop.
Raindew, I totally agree that through this journey I have learned which family and friends will be there in the hard times. There are some who haven't even called or inquired but there are those who I didn't except to hear from that are coming out of the woodworks and offering help, support and just being there for company. I have a inner circle that will drop everything to be there for me. There are those that I supported during hard times but they are no where to be found right now. Initially I was sadden and hurt but I had to focus on those that were really there for me and show the love, generosity and support that I need right now. What I don't know is if they just can't face my DX or some people are just not "caregiver" and/or "supporters" or can I say selfish in their own way?
My updated: I have been following your post very closely to track some of the SEs I have had. Day 1-3 were really a non-even for me however days 4-6 were a bear. I lost my appetite, nausea kicked in full force even with meds, the Big "D" kicked in yesterday and I think I have thrush which they have given me the mouth wash for. Today, nausea seems to have left and I can hopefully try to eat but nothing I mean nothing taste good -- even water. LoL. Any tricks or advice on how to just force food in please let me know. Are any of you taking supplements or vitamin's you can suggest that I talk to my MO about?
Lastly, Wondering if a few of you from this thread could drop into the Aug 2014 thread and encourage some of those that are having SEs.
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Oh Coyote the bracelets are just beautiful ! I would love one ! 1 - gold 2 silver
About running nose I'm there and also my eyes are watery all the time look like I'm crying or have something into my eyes ...
About the family crises hehehe we all have someone I think about and I know it's hard but I just feel sorry for them. They don't have the privilege of sharing life with us and WE ARE AWESOME !!! Kkkkkk😉😝😘
I wish I could do something for u girls but my talent is on the kitchen I bake and do lots of good stuff . T mbvbb
he problem is I couldn't send them to you because is food and would be no good 😪
XO
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Add me to the thrush list, Lew went and picked up my swishing medicine. Diarrhea is better, still hoping to drive to Burnsville tomorrow for Dad's birthday and the river boat cruise.
I did get out into my yard before it got hot and picked a bouquet of flowers, and trimmed back some perennial stalks. Totally pooped me out and I've been resting in the recliner since, but nice to get some fresh air.
Woke up to find another cat in my trap under my bird feeders - I baited it with a smelly sardine can! We live near the university and students have been moving into nearby apartments. This happens every fall and spring, they let their cats run free and I catch them and the police take them to the pound. So far have sent 2 cats, no collars or tags, and I know of another one that's been lurking. If they only realized how unsafe it is for their cats to be roaming around.
Got my bill for chemo #1 today: $6835 for the chemo and premeds, $5592 for the neulasta shot. All I had to pay was the $42 office visit copays. Such a blessing that I qualified for medicaid expansion through Obamacare.
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I'm astonished at the cost of medical care! Puffin, but so good that you're covered. Here's something that doesn't make any sense at all...my Neulasta shot is not covered by OHIP (that's Ontario's medical plan ... you just show your card and you're good to go), but is covered by my employee benefits. However, the cost here is $3000ish. How is an extra $2500 justifiable when it's exactly the same drug????
Anyone wish they had pharma shares besides me?
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Oh...and I hope the thrush is short-lived and you enjoy your outing tomorrow, Puffin.
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My computer melt down was short lived, but a bit pricey. I managed to get on line with safe mode and get the phone # to my Virus Protection provider. I thought there might be a connection. No connection but they have a remote repair capability. We connected computers and the technician went through my computer as I watched. What a mess! It took most of the morning, but it now runs like a dream.
Ladyb - I understand that statement about water tasting bad. I have said that very thing to my hubby. It's so easy to get dehydrated when water is hard to swallow. First I went to bottled water, then I squeezed fresh lemons in it and added stevia sweetner and lots of ice. That's where I am now. It's working.
Joeysmom - To add to the above note about dehydration, are you drinking enough water? I've noticed that I get a lot older looking when I get dehydrated. It shows a lot faster at my age, but lines and wrinkles become considerably more prominent when there a water shortage. Hydrate inside and out. These chemicals really cause all the issues that pull fluids out of you. A lack of sleep adds its whammy by contributing under eye circles. Such an incredible beauty program we are all on - No hair, no boobs, dry saggy skin, runny nose, and red teary eyes with dark circles. Chemo Babes for sure.
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Coyote -- Chemo Babes, yah, that's us for sure! And you're so right about staying hydrated, though it is a bit of a chore, given that I'm getting a bit tired of water all the time.
Mags -- I definitely feel the chemo brain the day after!
Puffin -- I can relate to your story about your yard work. Even though I feel pretty good most of the time, I sometimes get wiped out from the smallest tasks! This morning, it was putting away laundry. Hope your thrush goes away soon!
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I've had the shakes most of the day, and just queasy. I took a zofran but it's still uneasy. Nowhere near throw up levels, for which I'm thankful. But I sure don't want to put anything in my tummy. Gonna take an amytriptaline and see if I can sleep all day tomorrow. I just feel beat. Nini Chemo Babes!
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Chemo babes! Coyote, I love it! Got nausea right away from treatment today. Blech! Could be from eating a pb cup blizzard during my infusion? It was worth it since now food will suck.
I can't drink plain tap water either but found that Dasani sparkling water (lemon flavor) goes down better. It makes you burp more though.
Mags, I'll check that thread out. Thanks for the heads up!
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Hope everyone feels better from those darn SE. Good night!
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Wish I could really mean good morning, but it's sucky for me. It's day 3, nausea the worst yet, if I'd had anything in my tummy it would have come up. Cousin is out so I had to feed the dogs, and that didn't help. So shaky from the steroids that I had to lie on my hands to sleep. But I did sleep so that's good, now just lying back in recliner with tea, took my zofran so nausea abated, but still shaky.
Will check in later.
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Hi Mags, So sorry that #3 is such a hard hitter. Try to zone out and sleep...it does help time pass.0 -
Mags, hang in there.... I agree with Coyote; find something that helps you zone out. Maybe sleep or a DVD -- I use books on tape -- keep taking it easy.
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