January 2016 Chemo!

Options
1252628303186

Comments

  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2016

    I remember hearing they can help to stave off rash too, I think

  • MB12
    MB12 Member Posts: 79
    edited February 2016

    Lovestofly and Jensgotthis - TYSM! 

    I am in the process of organizing all my notes this weekend...yikes.  Chemo start date is February 23rd. 

    Also, I am loving all the shaved heads.  Everybody looks so gorgeous and strong!!  Rockin' it the GI Jane way..boom!!


    Happy Friday :)


  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    good luck MB!!

  • Frill
    Frill Member Posts: 311
    edited February 2016

    LovemyVizla: I don't know the side tie scarf trick, except I can picture it my head. This youtube channel though has tons of scarf ties for everyone going the scarf route. It's really what convinced me that no hair wasn't going to be so bad after all:

    https://www.youtube.com/channel/UC2XCTY8ZiotLYahaa...

    MB12: I know I'm getting the wicked steroids for rash.

    And speaking of rash...I just took the 2 of the 4th steroid pill. I hope I'm not being paranoid, but my chest is flush. The back of one knee is cracked and itchy - although I'm hoping that's just leftovers from week one. The rash of doom last time happened on Saturday and I noticed a tiny bit of it Friday night, not enough to think anything of it. I'm so pale, I get red super easy, so it doesn't phase me. Fingers crossed I don't wake up a big red itchy tomato, lol.

    BF offered to shave it for me, but he's got like - beard clippers. I really just want to try to wait. Not touching it. I have a lot of hair, so I'm just hoping. Wednesday I can wear a scarf back to H-town if it's bad and I won't go to work.

  • Veronica31
    Veronica31 Member Posts: 97
    edited February 2016

    Keepsake you poor thing! Hang in there. Rest and take care of yourself. Sending positive thoughts your way!

  • MB12
    MB12 Member Posts: 79
    edited February 2016

    Thx Lovestofly! 

    Frill - good luck on the rash!  Hope you do not turn into a tomato! 

    I get my ct scan on Tuesday.  I have had this red blotch on my nose for 3/4 months and I've been breaking in out in teeny weird, small red patches like eczema for 3/4 months.  I am going to go to the dermatologist after ct scan.  Thought I should see if anything gets picked up on that, first. 

    Has anyone else experienced small little eczema patches or tiny dot circles on their body before treatments?   I think the cancer is making my body go cray-cray!  Also, I did have a psoriasis/eczema breakout 2 years ago and I have always had mega dry scalp and skin for my whooooole life.  Right now I have 2 dime/nickel sizes and 3 small dots on my body.  Top of my foot, 2 on my stomach, upper leg and lower back.  WTH?!  I am std free and HIV negative. 

    I did read about a lady having skin mets on here.  Hope the dermatologist can laser the red off my nose. 

  • sarah_sunflower
    sarah_sunflower Member Posts: 47
    edited February 2016

    hi ladies,

    i have been a bit out of it since my second dose of TC on Wed. Finally buzzed off my hair and surprise, i feel so much better. what with having not to clean after all the hair that was practically everywhere last two weeks.

    very tired and have some body aches, but i think this round is slightly more bearable than the first one.

    best of luck to all the lovely brave women, and keep the humour coming! though i'm not able to post much, your posts here give me so much strength and laughs too

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    yes, buzzing my hair short really was a relief! I hope you start feeling better soon Sarah. As hard as it is, if you can get yourself outdoors even for a five minute walk. It really does help me!

  • FLBuckeye93
    FLBuckeye93 Member Posts: 87
    edited February 2016

    Wow! You guys look gorgeous! I agree that it's uncomfortable because we never see bald women, and so we think having hair is the only acceptable way. I applaud you for being brave and embracing the new, beautiful you.

    I survived my week of teaching at the Petri dish. My Iron infusion didn't happen, and it took three days to figure out what was going on. They had to switch me to another drug because they couldn't get the first one from the manufacturer. Long story short, it's a 20 min. Infusion instead of the 4-5 hour one they told me it would be.

    So, they can give it to me during my third chemo which is this coming Thursday. I'm hoping this round goes better than round two, and the iron helps me get my energy back sooner.

    Enjoy your weekend!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 146
    edited February 2016

    Veronica31...you are beautiful and rocking that bald look!!!

  • buttaflydiva
    buttaflydiva Member Posts: 88
    edited February 2016

    I'm day 15 and my hair is sshedding so bad today so I'll be buzzing in the next couple days. I had medium long hair at the beginning of this journey. I week before my 1st infusion I cut it to shoulder lengthy, then last weekend had it cut very short above my ears just trying to gradually get use to having less hair before I rock the bald. Funny everybody,including my kids, love it better short. You guys that are already rockin the bald look wonderful and I hope I look half as great as you guys


  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    I did the same as you butterfly diva. I went from below my shoulders to Chin length, then to ear length, then I got a longish buzz cut, then I got it buzzed pretty well off.

    My favorite was chin, it had actually only been longer than that because I grew it for my daughters bat mitzvah.

    But almost everybody told me that they liked the longest buzz cut best and that I should always have it like that! My feelings about that were mixed. On one hand I was certainly glad to not look hideous, but on the other hand I like having a bit of length in my hair so it kind of bothered me to think that The people around me actually think I look better differently ( I wish they could've said something more like "I know it's not how you like your hair, but it's actually quite striking/flattering/etc"....then saying they prefer it), but I guess I have to push that aside.

    When my hair comes back I will certainly grow it the way I like it, and anybody that tells me I should have a buzz cut again might get a mouthful (mot that there is anything wrong with a woman having and rocking a buzz cut, but I did it because I have cancer and need chemo, and the thought of people repeatedly telling me I should do it again really upsets me).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2016

    Hi beautiful ladies,

    I've been slow checking in after my infusion #1 because it's been hard to face my computer (source of so many things I wanna do but don't seem to have the energy/attention span/motivation for, and then feel guilty or mopey about not doing). But I have been reading all the posts via phone, and knowing others are out there doing what I'm doing and obsessing on what I'm obsessing on!) is a great comfort. You ladies rock.

    Anyway, I'm on Day 10 after infusion #1 of TC. Was generally doing well with the SEs (mostly achy/spacy/tired, with a side helping of bad taste in my mouth/buzzy lips that lasted til about Day 5 or 6). A little constipation the first few days as the Zofran they gave me in the IV (and probably the chemo drugs themselves) worked their way out of the system, to be replaced with something just on this side of diarrhea, but handleable. Nausea nonexistent due to judicious application of medical marijuana, and Advil seemed to damp down any achy bits. Have had some small red itchy rashy patches in my chemo hand over the last few days and plain coconut oil seems to work great on soothing those. I'm also trying to drink 100 oz a day of water to help flush things through, continuing regular chiropractic care and had an acupuncture treatment. However, because my WBC started out so high we delayed my Neulasta shot until a week out (Thursday evening, Day 8) and now here I am in the wee hours of the morning on Day 10 and my back right in the center of my sacrum/pelvic area is killing me with that crazy skele-gro sharp pain others have mentioned. Yes I took Claritin (24 hour kind) on both Thursday night and last night, and I just now took some Advil, which at least seems to dampen/blunt the pain. Any other suggestions?

    As far as the hair adventures go, yesterday I went to the hairdresser to get a super short cut in preparation for the hair fallout I anticipate will happen next week sometime. I have never in my life had hair any shorter than chin length and this was a huge change for me. I wanted a little time to get used to how it would feel to be bald without actually being bald yet. I can tell you for sure that it feels weird not to have the weight and the movement of hair that I was so used to. And wow the back of my neck is cold. Scarves to the rescue, good thing it's winter still and I have a bunch of good ones! But despite the fact that it actually seems to look pretty cute short like this, I'm finding myself mopey and sad when people compliment me, because dammit, I didn't want this short hair (I didn't want these new smaller perkier boobs either), I was happy with how things were. I guess this is grieving. Emotionally all these little losses add up. Each thing that happens, each side effect we endure, each change away from our previous "normal" selves we experience on this treatment adventure is still a damn lemon, no matter how sweet the lemonade we make of it during or afterwards.

    Anyway I'll try to post a few pics for before and after reference. And I'm intending to rock the bald look once I get there, with hats for warmth as needed. Verinica31 and Lovestofly (and all others who posted pics) you are gorgeous and you inspire me!

    Keep on rocking it, BC Sisters!

    image

    image

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    quix you look great and I am glad to hear I'm not the only one having this reaction to the compliments. It seems so unkind/overly sensitive to get upset about it when people are trying to be nice, but I can't help it! I liked my hair!

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    "each side effect we endure, each change away from our previous "normal" selves we experience on this treatment adventure is still a damn lemon, no matter how sweet the lemonade we make of it during or afterwards.


    So very true and beautifully said. I try so hard to be positive and optimistic and enjoy my life as much as possible, and I think that's a good thing, but it's a bit of a double-edged sword because I think some of my friends don't recognize how hard this really is. They just think "Jill seems to be fine". But even though I am positive and optimistic and enjoying my life and doing very well through this (I think, it's still sucks and I still need some extra attention!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2016

    Jill, I totally feel ya. I too am a glass-half-full, look-for-the-silver-linings, how-can-I-make-a-funny-story-out-of-this, just-keep-swimming, strong woman warrior, and I too feel like I need more acknowledgement and attention around how much this sucks and how hard this all is. Right after my first infusion, after everyone had repeatedly counseled me to lay low and stop doing and rest and let myself be cared for, my husband came down with the flu. (Whew, so glad I got my flu shot this year!) So I wound up taking care of myself (luckily with the able assistance of a few awesome girlfriends) and also taking care of him. And now hub's dad is in the hospital and approaching end of life and there's all the family drama around that. Hard to continue to let myself keep broadcasting how vulnerable and needy I am and ask others to continue to take care of me in the face of events like that. So a place like this forum is invaluable to me. I can be both brave and whiny. ;

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    (((((hugs)))))

    I think part of what it is for me is I'm actually tolerating chemo very well, so people keep asking what they can do for me, but there's nothing I really need people to do for me. I don't need people to cook for me, or take me out, or bring me things. So now people have stopped asking

    But that doesn't mean I don't need people!

    Nobody seems to know how to be there for me if I'm not telling them something really concrete they can do to help me, and I'm not sure how to say to them I just want them to come visit me, or text me and bitch to me about work. Obviously it's not everybody, there are some people who are being really awesome, but a lot of people have really dropped the ball and disappointed me. I think the hardest is that the worst one has been my best friend, it's really hard to feel so ignored by her. I think she is scared and doesn't know what to say or do, and I feel bad about that, but I wish she could push it aside and be there for me anyway. Includes me in group things and stuff like that, but throughout all of this she has never visited me or asked me to go out for coffee or a drink alone or anything like that. She has given me zero private time and that has been hard

  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2016

    Thank you ladies for sharing your feelings about people and their thinking we seem to be doing fine. I've been struggling with this. While I've been trying to keep an optimistic outlook and keep up my appearance and activities as much normal as possible (probably too much so which has tired me out), when I do so people have said to me "oh, you're nailing cancer, this will be a breeze" or "did you think this would be so easy?" Little do they know I'm totally wiped out a lot of the time and feel, at my lowest times (the TC leaves me super emotional and shaky for a few days), that I'm not sure how I'm going to get through this when I get to the later cycles. I've been warned that the last couple of cycles will be brutal - I'm trying not to EXPECT that to be true as we each have our own journey, but also preparing to accept a little more help just to make it easier. Trying to hold onto the fact that it doesn't matter what others think, but it's a little discouraging and confusing at times

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited February 2016

    Jen, how many treatments do you have to have?

    I got my head shaved yesterday. Turns out my brother shaved his too, even though I didn't want anyone to do that. He actually looks better than I do, because I have bald spots. So I won't be showing you my bald head, but here is my free wig from my LGFB class. It's a Raquel Welch heat resistant synthetic. The patient navigator suggests this auburn color, saying that it looks good on a surprising number of people.

    image

    I'm going to need an eye lid lift to get rid of those wrinkles!

  • Frill
    Frill Member Posts: 311
    edited February 2016

    Y'all just always seem to bring up something relevant for me. I guess that's what's so great about the boards. I decided to get all my DX stuff updated on here so it's in my sig like everyone else. It's just sent me into a big - I'm a one-boobed cancer freak - spiral. And no one knows.

    I get all these compliments - You've just got the best attitude, you're so funny about all this, you are so strong, or THE WORST, You're my hero. OMG.

    I can just now look at myself naked. Some hero. I handle this the way I handle everything else, working all the time - but that's going to become an issue.

    I went to get my lashes done and they'd been talking about me in the shop a stranger paid for my lashes the day before. That's really, really sweet. But I felt sort of.....I don't even know the word.

    The hair thing has just really hit me. Then looking at all the path reports and surgery stuff - now THAT was a smart move.

    But the hair is hanging in there, so at least there's that. None on the pillow this morning. It's just that strands sort of stick out in places and I'll take those out. Also I have cute baseball caps in the closet I forgot about. I need to bring those with me.

    I'm going to make a grocery list for tomorrow since we're having people over (yay - not) and BF seems to be subsisting on beans and sandwiches while I'm gone, so I'm going to crock pot some meals next week and freeze them. That should give me something else to focus on. And I can work on my Valentine's wreath that there's no way in poop I can finish by <3's day, but still. I'll pick something more achievable for St. Patrick's Day lol. I need to be distracted.

    LovestoFly: I am so sorry about your bestie. I bet she feels really bad and helpless and just needs you to get her to do some girl time. Invite her for something and get it out in the open. Then things can go back to normal. I know it's easier said than done.

    Quixhobbit: I love your name. I keep wanting to tell you that. I'm drinking tons of water, too. I wonder if it's helping with the SEs, I've been doing 120 ounces daily since the rash of doom. The water app has helped a ton.

    And I'm with y'all. As soon as chemo is over, the hair is growing. It's just going to take forever before I can wear my extensions again and my hair was long enough that it all blended perfectly. I don't want to add up the amount of money that is just unwearable because of stupid cancer - and the thing that made me feel the cutest instantly.

    Okay, enough wallowing.

  • Geeper
    Geeper Member Posts: 164
    edited February 2016

    All of you look are beautiful with or without hair. I was a little blue this week because my hair was falling off by the clumps. I honestly did not think it would effect me but it did. I know it's just hair, but losing it made me feel like I would really look like a cancer patient.  Two of my sisters shaved their hair before me and so did my daughter, so that gave me the push I needed. I am embracing my baldness and I should have done this sooner. Excited about Super Bowl; so many things to do so little time. I hope everyone has a blessed Saturday! Thankful for today :)   

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    Geeper you look gorgeous.


    Ladies I have a job interview Monday. What do you think I should do about my head? I'm thinking maybe of wearing a scarf. To be honest I don't really like them, but I guess it looks a little bit less casual than a hat, and I really don't think I'll be comfortable in a wig and I think showing my head might be a bit distracting for them. It's at my own agency, everybody there knows what's happening anyway so I'm sure nobody would really care what I wear on my head, but I want to show that I'm a serious contender in spite of my current condition.

  • Cathytoo
    Cathytoo Member Posts: 667
    edited February 2016

    LovesToFly...I know exactly how you feel about people disappointing you. One of my dearest friends who also happens to live right around the corner, has yet to just spend some one-on-one time with me. She sends a text every day to ask how I feel. She constantly asks me out to lunch or to play cards, never acknowledging that I might just want to have a little visit from her. She has never offered to go to an infusion with me to keep me company. Never asked if I want her to pick up something at the food market. It's so strange. And, it makes me feel very alone sometimes, like she has forgotten what I'm dealing with. But, then there are those who are really there for me. This is a strange and scary road we are traveling. That's why we're to lucky to have everyone on this site who can understand and lend an ear to listen or a shoulder to cry on.

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    Sorry you were going through this as well Cathy!

    My best friend also lives around the corner and she's not a single mom or anything like that, she could get out easily. I have only seen her a few times since my diagnosis, but all of them were events in big groups. She did not visit me after my surgery, nor has she visited me during the times I've been home relaxing after chemo. She was not even checking in with me much, but I did bring up to her that I haven't been hearing from her as much and that it was OK if she didn't know what to say or was scared by my diagnosis,, and even though she made excuses about being busy and said it had nothing to do with that, I have noticed she has made more effort to check in. But she has still not asked if I want to go for a walk or lunch or something like that, and we used to do stuff like that regularly. Not a ton, but at least once a month. It is like she is afraid to be alone with me. Also has not offered to bring me food, asked what I need, etc. As I've said there's nothing I really need right now…maybe as I get further into chemo I will… But it would still be nice of my best friend, the maid of honor at my wedding, living right around the corner, asked!!!!

    Is also true that there are some people that are really there for me, and they aren't necessarily the people I thought they would be. One of my closest friends had this weird habit of always texting me like she was writing a greeting card, it got so annoying. " i'm thinking of you and praying for a speedy recovery back to health"...stiff like that!! I finally told her she just had to stop and talk to me like she always has, and now she does!

  • Cathytoo
    Cathytoo Member Posts: 667
    edited February 2016

    LovesToFly...have you found that some of your most casual friends are there the most? I read this in an article written by a young man with leukemia.

    "Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable"

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited February 2016

    yes there's true! And some of my more casual friends/acquaintances have definitely been the ones most there for me!

  • Frill
    Frill Member Posts: 311
    edited February 2016

    Cathytoo: That is really true. And it's the people who just treat me like they always have are the ones I appreciate the most. One of my friends posted on my FB wall for my birthday about 3 weeks ago, "HAPPY BIRTHDAY, BALDY!!" Lol, it wouldn't be that great today, but at the time it was hilarious. My boss had cancer a few years ago, so it's not a taboo subject. I can say stuff like, "Hey, I should get a break, I have cancer" and I'll get something like, "You had two brain aneurysms, too, quit trying to get out of work. I just want normal. I think people who aren't so emotionally invested have an easier time dealing with it, maybe?

    LovestoFly: I'd wear a scarf. It won't be distracting either way - like WIG or HEAD. It's just you in a scarf. Check out the youtube link I posted, if you have a pashmina around, you can cook up something fabulous. image

    That was my halfway attempt to try one of the basic ties so I would have some kind of idea what to do. The scarf is dark so it's hard to see, but it looked really pretty.

    Geeper: Wow!!!!!!!!!!!!!!!!!!! Another bald beauty!!!!!!!!!!! Y'all all look so amazingly beautiful. I wish it made me more brave. I just dread Wednesday. I just feel like a 47 year old one boobed now balding ......ugh, and now a whiner. I can't believe you had all those women in your family doing that with you - that's just really amazing. I bet y'all all look gorgeous together. And - can I have your eyebrows?

    And my bestie - who's a nurse - and has quit work and is going to grad school online, I get text messages from her and that's it. I think some of my problem is that I'm just so darn independent, I've really refused a ton of offers to go with me to doctor's appointments from a lot of people. Now that I'm finally really anxious about going to the hospital - like how am I going to react to chemo this time - no one is offering to go. But it's not like I've *told* anyone that. It's a double-edge sword, going to the hospital by myself, I get work done, shop for some Kendra Scott, lay in bed get poisoned and do Duolingo. To me, all that alone time is awesome. Then again, I look around in the waiting room and almost everyone has someone with them.

    LovesMyVizla: Your wig is gorgeous and that color is great on you! You look beautiful!!!!!!!! That was my fall haircolor before I chopped and bleached! Oh, and Raquel Welch wigs are on Patty's Pearls website if you want to get more. I got my Jon Renau wig for 20% off. I hear they even have BOGO sales. And I wanna see a pic of you with your Vizla, I'm assuming you have one of those gorgeous pups!

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited February 2016

    I think if it were me interviewing for a job, I would put on a wig for the duration of the interview. Afterward, hangs to whatever is most comfortable for you. The old "dress for success" thing.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2016

    Lovemyvizsla, I only have 6 cycles (and I've got 2 under my belt). I'm a recently single mom with a super active 6 year old boy, so my big worry is not being able to care for him that way I expect to be able to. I'm lucky, though, I have lots of people offering help. And I'm learning to accept it. And BTW, I think you look fantastic!

    Geeper, you too are stunning.

    All of you ladies who've shaved your heads are giving me the gumption to do it myself. I have a ridiculous partially bald head. One question for you, did your head feel irritated at all after you shaved it off? ANd how close do you recommend? I've been planning to see what happens next wednesday when I'm day 14 of round 2 - my head is nice and soft and not irritated, so I haven't been too motivated to do anything.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2016

    Jill,

    SInce your agency knows what is going on, I think you would be fine in a scarf. And, importantly, it sounds like you yourself would be more comfortable in scarf as opposed to a wig. I tend to agree that rocking the bald might make the interviewer a bit uncomfortable and you don't want them distracted with that. Good luck with your interview!

Categories