April 2015 Chemo Crew... Starting in April? Please join us!
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Nice photos!
There are several things I'm in too much discomfort/pain to do right now--PT consult, Lymphedema consult, and prosthetic fitting. The idea of anyone touching my arms, incisions, or the port area other than my surgeon is too awful. Plus I'm still having pain at the port site, so I feel restricted in my range of motion stretches. I want neither to cause more pain nor to screw up the port.
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OK ladies, anyone else less than stoked for this whole way of life we have right now? Well, this video is a great metaphor for what is going on in our bodies....slash and burn so that the landscape regenerates healthy beautiful life. Also....it's just really cool!!!
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wow allicat you look great! Thanks for the cytoxin info I never knew that
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littleblueflowers: awesome video and way to think about it! We will all emerge new and beautiful.
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Home at last - wow! This journey is filled with surprises and I think I will stay close to home until chemo is over. I slept for an hour this afternoon and woke up to a happy family. Tomorrow is hair shaving day - a little ambivalent but let's see how brave I can be. I think all of you look so stunning with wigs, bald, and scarves. It gives me lots of hope for this next phase which perhaps is harder than I anticipated it would be. Now to hydrate and get some exercise. I have to say that I did not take my heartburn med last night, and then had acid reflex. Took it and the symptoms subsided. Just when I think I am doing ok. I wonder what the meds do to anxiety, depression, etc. Perhaps SEs is what I felt in high anxiety. Phew. Trying to breathe.
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What a difference two days make! SE kicked in with nausea and fatigue. Made me sick to feed my dogs this morning. No taste for coffee, just water and tea. Have slept most of the day, no appetitite, but blood pressure is a little low. Taking nausea meds, but just feel yuck!
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I started TAC on April 1. Due to have six rounds, once every three weeks for eighteen weeks prior to double mastectomy/hysterectomy with ovary removal. I live in Queensland, Australia. Best wishes to anyone else starting out. I don't know what questions to ask yet and, as I'm new to all this. I just plan on taking things as they come and doing my best to get through treatment.
I really suffered during my first round of chemo and had two hospital admissions due to severe chest pains (investigated for heart attack/clots, etc) and then headaches/rash/fever. Subsequently all symptoms were due to the chemo. I think anxiety was also involved so I had a sense of dread accompanying my physical pain.
I'm through the second round and back in the sunshine ten days after which gives me another 11 days before next chemo - these days are so precious. Although I don't have an appetite, I'm alive and not in pain or nausea.
Part of the reason I feel better this time I think is that I kept pain and nausea under control with regular medications and found occasional diazepam helpful when relaxation/attempting to be present just did not have an impact on that "dreadful" feeling.
I've fortunate to have been able to stop work completely during my treatment so I'm taking the opportunity to reevaluate my approach to self/ life/work/relationships. My intention is to live whatever life I have going forward (hopefully a full life) fully grounded in reality and present with the people I care about and the activities I value. I really don't like suffering but chemo has given me practice definitely!!!!!!
Good luck to everyone starting out in April. Kind regards, Jean
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Hi Positive
I can so relate with what you are saying. Headshaving was a bit weird for me too as I was worried I might look scary to my four young grandchildren. I got them to do it and they laughed and really accepted it. I notice my seven year old granddaughter is very accepting of me being bald around the home but she is embarrassed if I take her to school bald.
Losing hair was probably easier for me because my hair has always been fine and taken a lot of "doing" to look good. I got a really good wig though and its heaps better than my hair will every be. I love putting it on and its really simple - I'm glad to have an excuse to get a wig. People who don't know I have cancer and I haven't seen for a while have complimented me on how good my hair looks.
Hope you've found your hair journey as good.
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ok I'm getting personal here but does anyone else have burning sensation when they pee I have been on and off since I recieved chemo when I went to the urgent care and er they both cultured my urine and it was negative and I'm on antibiotics and recieved a ton of antibiotics in the hospital so if I did have one it should be taken care of. I just can't stand the feeling in did not expect this as a side effect
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Ok...I cried and cried about my hair. Oh, this is hard and I did not expect myself to worry about my hair. My son (10) said "Don't worry, Mom, it's not your hair that makes you so beautiful." BAWL......... Waaahhhh...... I am doing a quiet hair cutting thing tomorrow. it's too much.
Stephmoen - not a burning sensation when peeing, although onc nurse told me this was possible. I know this is gross, but my poor butt has been sore and tender since chemo. I am trying to drink as much as possible to wash it all out of my system.
Thanks madjeanius and others. I, too, will get through the buzz cut. But for now, I am just going to cry about it. Kids are ready to give me a mohawk and other styles.
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ksusan, hope you get some pain relief.
littleblue, yes; burn those blasted cancer cells
fmmbw, I hope the darn side effects are short-lived, and that you feel better soon.
Jean, Welcome! I am glad the second round went a bit better for you. My wig looks bette than my real hair too. Mine was not thin, just unruly and out of control...and my wig has no gray, so I look a bit younger. Nevrtheless, I will be ready to ditch it when chemo is done!
Stephmoen, The cytoxan can cause bladder irritation. The burning can also be due to skin irritation.
Positivespirit, I am sorry the darn hair thing is so hard. (((hugs)))). We all need a good cry now and then. I think it is healing
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Welcome Jean!!
Stephmoen, this treatment I'm having burning, and not just after I pee. I used coconut oil on the nether regions which helped!!
fmmbw, I hope youre feeling better today.
PositiveSpirit Your son is right, and how sweet is he??? What a good son!
I got my buzz cut last week.....I didn't cry, but expected to. I keep a knit cap on all the time even around the house. I cant stand the sight of my bald head. Its cut super close, but I still have alot of stubble...and so much of it is gray! AAACK! I have been coloring my hair for years, had no idea how REALLY gray I was. I think that may be bugging me almost as much as being bald. lol
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ksusan, I hope your pain improves...I'm also having problems with my range of motion exercises since the port placement. I'm almost to the point of asking for a consult with at physical therapist, it wasn't mentioned by my BS. I was fitted for prosthesis a few weeks ago...gradually I've gotten used to wearing them. At first the sensation of anything on my chest was very strange, but it does get better!!
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ksusan & GingerChi -
I am having range of motion issues with my port too. My shoulder , upper back and arm always painful. Not a horrible pain but a like a a muscle strain that never goes away. I kept a heating pad on it most of the day yesterday.
It has been almost two weeks since the port surgery. I have a follow up with my surgeon on Tuesday. I hope it won't be painful like this for the whole 5 months of chemo.
Other than that I have been fairly lucky with SEs. Mostly just fatigue and aches. I have bad heartburn and am going to run out to get some Prilosec today.
Hope everyone is doing as well as can be expected!
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it's my 30th birthday today hooray 😝 and my biggest gift of all is from chemo my hair is falling out like crazy it's everywhere I'm having family over and I'm trying to stay happy my wig still has a few things I want done differently to look more like my hair I don't feel prepared for this my nurse navigator told me it wouldn't fall out until afer my 2 treatment well she was wrong! I'm just going to try to enjoy this beautiful day in michigan (75 and sunny!!!) didn't think I would be balding at 30 lol
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Gingerchi, if the knit cap gets too hot over the summer, bandanaworld.com makes really thin (and cheap) skull caps. they are comfortable. I also have my favorite go-to ball cap. It is one I gto for Christmas from my daughter last year, well before my recurrence. It's made by Under Armour. I like it because it is thin and stretchy. Most ball caps are not stretchy. Because it is, it stays on my tiny little head better, and does not blow off...hasn't yet anyway. It's also just a cool, comfortable material. I need to get a few more because I wear it all. the. time.
I think my counts are falling because my pulse was really high just standing up in church this morning! I did manage to get my walk in before it gets too hot today, and I am hoping to get some things planted in my garden today. Sundays make me happy because it begins a new week, which brings each of us a week closer to having this in our rear view mirror. In case I haven't mentioned it lately, I am so very grateful for each of you on this crazy April journey. We've got a great group of gals here, and we're getting the cancer-killing job done.
Before I started chemo in 2013, I read probably hundreds of blogs of people going through chemo and I took notes on commonalities of people who seemed to have an easier time versus those who had a harder time with side effects. Some of it is a simple crap shoot; there are some things we have no control over. The one big thing that always stood out was that those who exercised seemed to have an easier time. I never knew if they exercised because they were having an easier time or if they had an easier time because they exercised, nevertheless, I made a commitment to myself both times to get my butt out and walk each day. There was a study on the main page of the website with study results on that very subject. Even if you feel crappy enough to not do much, try to get around the block or do any little thing you can. It seems every little bit helps. http://www.breastcancer.org/research-news/exercise...
Here's to a side effect-free Sunday for all!
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Stephmoen: 1ST HAPPY, HAPPY BIRTHDAY! So sorry you are here but you have much to share to help all of us. Glad you see the positive Beautiful, sunny day here in northern IL too! Must enjoy them as the winters are long. Remember this will pass and your hair will grow back more lush and full than ever. Enjoy your special day.
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Happy birthday Steph!!! Ha, I though I was the baby of the family here! Wishing you peace, love, and joy with friends and family today!
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Anyone's port still bugging them a month after insertion? It's not so much the port even as the catheter in my vein...it is very obvious under my skin, and I have weird random pains from neck to shoulder to bicep that come and go.
Also, is neuropathy a side effect of AC, or the taxanes? After a jog my feet feel kind of burny and sensitive all night. Any ideas on what to do about it? Also my left leg collapsed painlessly when I got out of bed this morning....then it was fine. I was afraid I was having a stroke!
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OK...day 4 after my 1st AC [dose dense] treatment. Good news is no Zofran today and so far no nausea. But I am so tired!! Made it around the block with the dog and went to the grocery store, but otherwise just lying in bed napping, and reading. Does this tiredness ease up a little before the next treatment?
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Happy birthday Stephmoen! I hope you enjoy your day despite circumstances, because we all need to find the joy in every day that we have. I am thinking MO said after 2nd treatment because it's usually 16-18 days post first treatment on the dot, and you would have had your 2nd treatment by day 14/15 if it had not been for hospitilization.
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gkodad - yes, energy will come back! And, I didn't even attempt around the block or grocery store, so you are doing very well with that. I worked from home on day 4 and had to take a nap at lunch time, got sooo sleepy, but just sat in a chair all day typing and looking at a screen.
Lynne
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Happy Birthday Stephmoen!!
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Hi all, just checking in for 5 minutes before I have to bring DD#2 to a birthday party. Busy, busy weekend, and I'm glad to say that I feel almost normal the last few days. Of course, have to be in the chair tomorrow for #2 to start it all over again, but I'm trying to take advantage of the energy and lack of nausea while I can. I even had a glass of wine yesterday (shhh, don't tell MO).
I went wig shopping yesterday and bought one. Insurance covered it, so it will be my back up for when I don't want to scare small children. My bff went with me, and she also looked at the cap I bought, and we stopped and bought fabric for her to make me one. She had made a beta version from a t-shirt by 5 PM last night. It was perfect except just a tiny bit snug, so with a small alteration, she'll be able to make me a bunch of caps. The fabric was only $3.50, and she says the .5 yard will be more than enough, she will use some of it to try a double sided cap. Isn't that amazing? What a friend.
This weekend must be all about prepping for the hair loss because I also was able to stop in Dick's and try a Buff. I didn't like them on me for the scarf/single layer look, but the cap was ok. I agree that it's very comfortable, so now I'll look on line to see if I can get a color that I like for that.
Also, I don't think I mentioned this, but my DD#2 (9yo) asked if she could get a buzz cut. I said sure! I figured I would call her bluff, but I did mention that she wait until I got mine, and we could do it together. So, she is so excited, and she has been counting down the days. I had to go to a meeting at her school, and the guidance counselor seemed appalled that I was going to let her buzz her hair. What do you all think? I figure it's just hair, and it will grow back. And, it really is about her, not me - she says she's doing it to show support, but she wants to do it today and not wait for me - I think she told everyone in school that she would be coming in with the buzz cut by tomorrow.
Gotta run, hope you all have the wonderful weather we are having in the NE.
Lynne
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happy birthday Stephmoen hope you have a wonderful day🎈🎁
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Happy birthday Stephmoen!
Thanks for the good advice, lovlilynne! I'm looking forward to the energy. I say if your little girl feels like she's supporting her Mom with her haircut, then go for it! She needs to be part of the process and doing it with you is special - but you're smart to let her see your hair first! You might want to discuss with her what she plans to explain to her friends.
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Stephmoen, happy birthday, and wishing you many, many more.
Littleblue, yes, my port still hurts the way you're describing. I can get very bummed out about this in the middle of the night, especially since it's my dominant arm side, but I try to remind myself that it's temporary, that it keeps my arm from potential chemo damage, and that my goal right now is to complete chemo successfully. I've decided I'm going to start doing some gentle range of motion exercises again anyway if my surgeon okays it.
Slathered up with 50SPF, in long pants and Tevas with socks, and a floppy hat, and gloves, and a mask, and tea tree nail treatment on my fingernails, I did some weeding in the shaded part of the garden yesterday and today. It's sweaty, I'm slow and I don't like not touching the dirt, but it's such a relief to be out in the yard doing something I enjoy with my partner. Tonight when the garden side of the house is in shade we'll get the sprinklers set up. My partner had to dig out a broken segment of the in-ground watering system. That's my job!She also had to carry heavy stuff and dig holes, things I normally do but can't do now. We'll see what the lymphedema story is down the road, but I hope I'll be able to do some weight training to get back to normal and lift heavy stuff in the sun again eventually. For this summer, I may throw myself a birthday party where I ask people to put in a couple of hours mulching and trimming instead of giving me a present, and I will sit in the shade dispensing beer and pizza.
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ksusan, your friends would probably love to do yardwork while you dispense pizza and beer. Friends feel helpless, and are usually so happy to have an opportunity to help.
Lynn, I would absolutely let DD do that. She will feel so very special to support you in that way. Maybe you can shop for a few cute ballcaps or something. Her hair will be cool for summer, and will grow back quickly too. It will be someting she will remember forever...and feel special and empowered about. It is certaily different for boys, but when DS shaved bald in 2013 when we had shavefest at my house, he was nervous going to school. He came home beaming...said all of his friends and teachers thought it was awesome. I still remember that look of pride. He shaved again this time.
gkodad, days 4 and 5 are the most tiring for me after AC. It gets better and better every day after that. Yesterday I was exhausted...today (day 6) I worked in the garden for hours,
littleblue, Look up hand foot syndrome. AC can cause burning. I ice my feet after every walk and run to help prevent it.
Happy Birthday Stephmoen!!!!!!!!! We must have been posting at the same time earlier!
It is a beautiful day here in Iowa too. I had a great day getting some veggies planted. Hopefully I put sunscreen on often enough
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Happy Birthday Stephmoen!! 30 is a special birthday and I am wishing many, many more to come!
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