Starting chemo July 2014
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I had my port out three weeks after last chemo. I don't miss it at all. It made me feel like a cancer patient and I tried everything and anything to be normal. It was a God send during chemo, but I was happy to say goodbye to it. Now if the darn scar from it would heal correctly pffft.
Nancy
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Ladies – I haven't been on since my surgery on the 7th. Not sure if I told this group, but my TE sprung a leak. As I was at my full fill level, the PS said, we'll just get you in for your exchange, well… the hospital couldn't get my PS an OR for me for 3 weeks, when he did the surgery the muscle had pulled the area back and he had to put another TE in. He was able to fill it to 420cc's, so I will only need another 2-3 fills to get it back to 650, but I have to wait 3 months for the next surgery, due to insurance. He did get the implant in on the left, and did lots of fat grafting (ouch). Today is 3 weeks, so I was able to get the drain out, although it is still quite productive (50 cc's+). Glad it is out!
Box, I love your hair. I too have always had long, but I decided when I turned 30, (19 years ago) that I wanted to see what short was like. Mine was very similar to yours. It looks great.
Mine is about 1" all over and black and white gray. I've been dying it brown for 20 years, and knew I was graying, but was not expecting the black. It totally throws my coloring off, and since tamoxifen, I'm losing eyebrows and eye lashes, I had to go buy black eyeliner. Brown didn't look right. But if I wear my wig, which is brown, I use the brown.
Nancy, I too didn't like my short hair, and grew it back. Now I have straight cancer hair… I have never had straight hair in my life. I have NO idea what to do with it. I either feel like a guy or like I stuck my finger in an outlet, as it is straight and sticks straight up. I find if very depressing. So odd, we have won the battle with cancer, yet it is our hair…
Coyote – Woo hoo on the PET. The 'you need to enjoy your life talk', as in, get your things in order? Wow – so glad you had an apt with your MO after. I have a friend, who just passed away from an intestinal issue, so not BC and not Kidneys, who was on dialysis for YEARS. It 'cramped her style', having to go all the time, but she continued on with her life, even went on a cruise. Who knew there were dialysis machines on cruise ships. But like you, the no tomato rule nearly did her in. Every so often, she would just say, I'm gonna go one day, might as well be from eating a tomato. Fortunately she wasn't diabetic, so didn't have that additional constraint to her diet. As to Sunny, each day will get better, but it is awful in the beginning. Sending loving hugs. Can they do dialysis through your chemo port? Also, were your kidney numbers off during chemo so were you expecting this?
Elaine – so nice of you to think of me, during my days off the boards.
Puffin – I did that cruise with my parents 15 years ago. We went the last week of July, and I think you had warmer temps. Glad the mammo was clean. Kidney issue – what??? I thought that was Coyote. Is it both of you?
Hair – how oh how are we supposed to shave these numb caverns called arm pits. And except for loosing eyebrows, eye lashes and maybe some hair above my upper lip, ALL areas that need to be shaved, need to be shaved. That is the ONLY reason I'm glad I'm still not allowed to swim, no need to shave the bikini area.
And YES, I did as I historically have done, I opened a word file and composed my message while catching up with your posts from the last 4 weeks.
Hope you guys all continue to improve!! BTW – I found my cancer 1 year and 5 days ago… so odd…
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good to hear from you knmtwins. Very sorry your tissue expander sprung a link. Sheesh as if you haven't been through enough already. Big hugs to you! I'm glad you're on your healing way now.
Nancy
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ok ladies I'm going to post a pic of my hair. I still don't go out in public without a wig. Short hair doesn't do it for me. Lol
And why I have this goofy wave right in the front is beyond me. Ha ha0 -
kmntwins -- sorry to hear that your exchange surgery had a complication, but glad to hear that PS has a plan!
Nancy -- I haven't had short hair since my oldest was a baby -- it was a change for me to. For what it's worth, I think your hair looks awesome.
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Awwww Elaine thanks - you made my day. Yes short hair is very hard for me to get used to. I'm such a baby lol
Nancy
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knmtwins: I've had something called angiomyolipoma in my kidneys for several years. It's a mass of blood vessels, fat, and muscle tissue, and I was having annual ultrasounds to check for any change in size. At the same time I was diagnosed with the breast cancer my annual ultrasound had shown they'd gotten bigger but my primary care Dr said to take care of the cancer first and deal with those in the fall. So last fall I had a procedure where the radiologist inserted a catheter in my groin, threaded it to my kidney and injected "stuff" to wizzle up the blood vessels that fed the angiomyolipomas (they'd gotten big enough they could have ruptured and hemorrhaged). So now I'm having CT scans to follow up and see how well the wizzling up is going. He was very pleased with this scan, said they've shrunk "significantly", and that I can go from 6 month CT scans to yearly.
Nancy, I think your wave in front is cute, I'd ditch the wig.
As for the port, I was on the fence with that decision too. It's an inconvenience to go in every month to have it flushed and I could certainly find something more fun to spend that $360 on ($30 copay every month). When I asked the radiologist yesterday what he thought, he said to take it out as they can plug up and damage the vein, and it could be years if ever that I'd even need to use it. So, it's coming out Tuesday.0 -
Puffin - thanks for the clarification. Gosh, how do you even find out you have something like that.
Nancy - I go without the wig to many things, just use the wig for when I'm at the kids school. It has been a hard enough year on them, they don't need to be questioned about mommy's crazy hair. I now even do let the neighbor children see me without it, but each of these have been baby steps. In the beginning I'd go to a different grocery store, so I wouldn't bump into people. My SIL is getting married on Sunday and I'm on the fence... wig... no wig. It is a small wedding so I doubt I'll be in any of the photos. Her groom's mom went through BC this year.
Hair - OK - so it seems most of us are challenged by our new hair. Has anyone found a post chemo hair styling site. As in one for dummies, as that is what I need. I have NEVER used a hair product, besides shampoo, conditioner and I have a can of hairspray that is 7 years old.... so ya see.... I'm real novice.
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I understand about the port. I despised mine, though it was convenient during chemo. With my reconstruction I had them remove it with my oncs blessing. I just felt it was a daily reminder of a terrible time. It was uncomfortable sometimes, too. Personal choice for everyone.
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I like the hair, too, Nancy! Very hip and in!
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I like the Nancy-do also. I don't know if it works this way for everyone, but my hair came in the same way it did as a baby - post each chemo fall out. I have a Kewpie doll peak just like my baby pics. Another woman here agrees - hers came in straight up and out.
kmdtwins ~ I had no clue during chemo and my MO was really surprised when my primary doctor came up with the test results. At this time, it's a dietary issue. I haven't heard back about the ultrasound. I kept forgetting to call and now the MO office is closed until Monday. I'm going to have the port removed as soon as my schedule allows it. Thank you for your understanding about Sunny. I struggle with it. I suspect that I am going to have to get it together or people are going to think I'm a bit off. (That might be true regardless.)
Really sorry about the leaky TE. That is supposed to be a "positive." Eventually, they will be good. Actually, two years after my exchange, there are very few, very faint scars across my chest. See... it will come together.
Puffin ~ So glad things are going well.
Take care my friends.
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You all look fabulous!
Within the last month my hair has grown quite a bit more... I almost have bangs!!! :-)
I've been taking prenatal vitamins and when I remember massaging my scalp with castor oil (read it helps stimulate growth not sure if its true but seems like it)
Styling it is horrible though... never had short hair that I can remember add curls and its a recipe for disaster! ( Picture afro here) I modified a lot of the scarves I used during chemo into wide headbands. All the older ladies love my curls- random grandmas come up to me to ask who did my perm so they can get theirs done, but when I tell them they don't want to go to my stylist lol
I have not found a site that tells you how to style your hair after chemo... I've searched and searched... had to settle for looking at pictures of ultra short hairstyles and trying to imitate them.
I use to joke with my friends about all the hair products they used as I use to just wash my long hair smooth a dab of coconut oil through it and let it dry naturally... now I'm amassing a collection of styling products because apparently what they say they do and what they actually do probably depends on skill of use and I have none lol
I recently celebrated my 40th birthday! After cancer treatment turning 40 was nothing lol I had a small get together a few friends over.
I've got a little garden growing... corn, green beans, tomatoes, potatoes, black eye peas, cucumbers, squash, okra, eggplant, carrots, lettuce... which with all the rain we've been getting in Texas is thriving
I still get tired really easily, but between hot flashes and insomnia it doesn't seem like I ever sleep... or at least not very well! All the prescription they give you for sleep make me feel so groggy the next day that I stopped taking them... better to be tired than be a zombie!
Wish there was something to give me my energy back last year at this time I was doing 5 miles on an elliptical machine every day now 5 minutes kills me!
Well this was long! I don't get online much anymore... But when I do I always pop in and read even if I don't respond!
So glad y'all are doing well!
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Hi ladies! I haven't been on in a long time so it was nice to catch up with you. Coyote, so sorry to hear of your pet and the kidney problems. What do they allow you to eat?
Puffin, glad to hear your kidneys are doing better. I have never heard of that! The cruise sounds wonderful.
Chaos, Nancy, pinkninja, your hair looks great! I'm struggling with the chemo fro. The back and sides grew much faster than the front and I look like bozo the clown. I always had curly/wavy hair but this stuff is unreal. I either wear a headband or slick it back flat with gel. On cooler days I tied a scarf over it. It's depressing as my hair was almost to my waist a year ago. I've never had short hair. Oh well, at least it's growing so I won't complain.
Also feels like I have dementia. I can't remember anything. I am only on herceptin now so I thought chemo brain would go away. Been struggling with depression and anxiety. I think part of it is body image. Bad hair, gained 30 lbs during treatment and my reconstruction is a bit disappointing. My surgeon says lose weight, but I swear the herceptin makes fat hang on! I walk every day, try to eat right and not much to show for it.
I got my port out right away when I had reconstruction. I hated it and it hurt. I get my herceptin infusions in my arm and it's no big deal. Everybody is different. One lady at the cancer center had hers in for 10 years.
Anyway, glad to hear from you all and hope you have a beautiful summer. 😊🌸
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well I must say I am glad I am not the only one struggling with the hair. I too have always had long hair so this is a whole new ball game. This morning I pulled out the blow dryer in the hopes it would tame some of the waves which I never had before. Nope that was a bust. Oh well even though it is short I have a lot of it so I will not complain.
Chaos Happy Belated Birthday!!!! Your garden sounds wonderful! I wish I had the room for one.
Maiden do you take anything for the depression and anxiety? I take lexapro. I started it about 6 weeks after my diagnosis. It has helped me so much -and I have zero side effects from it. I feel like a much happier person.
Thank you all for the kind words about my hair. Can you guys come over every morning while I am trying to do something with it and give me a pep talk? LOL
Hugs to you all
Nancy
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hi Nancy! I have been on Prozac but I don't think it's working as well anymore. I will look into Lexapro.😃
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Oh, maiden, your description of your hair is funny....but I'm sure that it's no fun to style. Ugh, the surgeon. Lose weight ?!? Like it's that easy. I'm still trying to lose the 20 lbs. I gained during my twin pregnancy twelve years ago. I'm still on Herceptin, too, but don't seem to have SEs. It's the Aromasin that made me moody and depressed. I'm on Celexa for that and it seems to be working.
Chaos -- happy belated birthday! Hitting the big 4-0! Yeah, after having cancer, the milestone birthdays don't seem that important anymore. Best of luck, getting your energy back. I've felt a little more energetic lately; I'm not sure why.
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Port is OUT!, No shower for 48 hours, no swimming for 3 weeks. Hard to believe it's 10 days short of being a year since my lumpectomy.
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Hooray - so happy you got to say goodbye to the port!!!!
Nancy
I always felt like I had this alien thing in me with it lol
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knmtwins, a leak! Oh no....how did u know they were leaking?
nancy, ur hair is so thick. I can only wish.
Happy bday chaos....I take Imovane aNd it doesn't make me groggy.
Puffin, yay for port!!!!!
My skin is healing well now that I have been applying Flamazine thickyly and then covering with gauze
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I knew it was a 'leak' as it was getting smaller... seems the type folds over onto itself so gets pin pricks from the fills. I'd see that as a manufacture defect and they should pick up the cost of the extra surgery... but ya know... to bad so sad for me. Maybe I won't pay our property taxes this year instead... We aren't that bad off, but it pisses me off. We have to pay the 1st $750 then 20% until we reach $5,000, then it is 'free'. REALLY didn't want to have to spend that money again this year... thought all I had was one exchange surgery, not two, oh and the pain. Nowhere near as bad as the BMx, but still, I'm almost a month out and browning ground beef is SO painful.
Today is the anniversary of my core biopsy... F'ing cancer!!!!!!!!!!!!!!! I mean, I had a Pcr, so I should be happy, and I am, but, still... what a year it has been for all of us, so glad you have been on this journey with me, couldn't have done it without you guys!!!!!!!!!
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June 2nd was my anniversary. Crazy year indeed already!!!
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today is the one year anniversary of my BMX. Maybe that's why I had bad dreams all night long. :-(
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June 3rd was my year anniversary for my diagnosis. One of those days unfortunately you'll never forget! Best wishes to all of you and hope you enjoy your summer!
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ugh today is my 1 year anniversary where the radiologist told me I had cancer . Horrible day. June 9th was my biopsy and June 11th was when I got the biopsy results.
As wallegator said these are days I will never forget. Hope you are all doing well
Nancy
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June 16 will be the anniversary of my lumpectomy. Strange how parts of last year seem like just yesterday, and others are just a fog.
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The doctors all told me that it would take a year to go through the bc process. At the time I thought that would be way too long. Now that I am approaching the 3rd anniversary of my First Encounter. I'm not 100% certain that they are somewhat optimistic. It was almost 2 years later that the second lump was discovered, and I was feeling good and free from side effects at that time. I restarted treatments (surgery) in May 2014 and the drain on my body remains from the second go round. I started all of this at 67, so age may play into it somewhere.
Puffin ~ I think there are times that "forgetting" is a way our mind protects us from things that would be really upsetting if we remembered them clearly. I actually rejoice in the loss. Maybe they didn't really happen?
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Puffin and Coyote - I totally agree about the forgetting. I'm usually one who writes everything down. I feel better when I get something on paper/computer. But from the time I was diagnosed onward I didn't write anything down. I wanted no memory of it. Now, I feel bad because other women who are going through this are asking me specifics and I'm racking my brain trying to think of how I felt after each chemo, etc.! I still want no memory of it...
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Walle, I kept a journal from the time of diagnosis, it came in really helpful at the time when the doctors wanted to know about symptoms etc. Now I mainly use it to look at the first page, where I have a list of the main dates, like when I had my mammogram, lumpectomy, start and stop of chemo & radiation, 1st haircut, and now the date of my port removal.
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Gotta agree, it's a blur. And sometimes I still look in the mirror and think, did this really happen? Do I really have cancer? It's even hard to write that word down, almost like if I don't write it, it's not happening. Last yr I was freaking out over having my port installed and getting my first chemo. We have been through so much! As a child I always had a journal/diary till my 30s. And i noticed I only wrote in it when bad things happened. Some things I had even forgotten about until I read my journal. That's when I decided to stop writing. I don't want to remember certain things. I certainly don't want to be reminded of this past yr. I know it happened and I survived, but I don't want to dwelve on the fear that I felt.
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Amen DancingDiva. Exactly how I feel. It's important to know all those dates, but the sad/awful feelings that came along with it I choose to forget! ( :
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