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Comments

  • soscaredhubby
    soscaredhubby Member Posts: 23

    Hi All!

    Southern, that wig looks awesome!

    I have also had a lot of bad dreams lately. My dreams seem to be the negative to my positive. My darkest fears come to life. My wife has been exceeding all expectations so far, but I think my subconscious is screwing with me.

    We are doing well this weekend. Wife is feeling good. The Ducks beat the Huskies, the 49ers and Timbers won. If I only had my Dodgers. Tho, my wife isn't exactly torn up that baseball is over in this house. Sad

    She has decided to join this thread as well. ( El_Tigre.) She spends most of her time with her blog. HERE is the story that was in the local paper last weekend.

    Hope you all are doing well/better.

  • HazelFrances
    HazelFrances Member Posts: 40

    Sorry if I am repeating myself. I had my first AC on Sept 28, Hope to have my second tomorrow. Have lost most of my hair in the past week and my scalp hurts when I touch it. Does anyone else have a tender scalp

  • tessu
    tessu Member Posts: 1,294

    My husband complained last night hat all I ever talk about is cancer and lymphedema and other SE-related and he's tired of hearing it :(

    Yes, my mind has been spending way too much time there. But then I've been spending hours each day trying to learn how to control my lymphedema, and battling other SEs. I am honestly trying to move my thoughts to other, more "normal" or at least happier topics. But when I've been advised to avoid going out in crowds and rarely meet anyone to chat with on dogwalks, I'm not at work (high infection risk type job), and he has no interest in hearing about my craft sewing attempts, movies on Netflix, books I'm reading, or music I've listened to, and he doesn't like to discuss anything on the news, or environmental or science issues, well, there really is not much new in my life left to chat about. :(

    So I apologized :(

    I don't remember whether I shared this before: an old college friend sent me this, and I am honestly trying to learn positive thinking:

    image

    Hoping everybody has an easier day today :)

  • Skittlegirl
    Skittlegirl Member Posts: 138

    Scotland, I understand the appointment feelings. Last week it was just the genetics counselor and a therapist appointment for my oldest. This week it's blood draw, pediatrician appointments for 2 kids, therapist appointment for my oldest, meeting with my surgeon, chemo round 2, and thyroid biopsy. So much going on.

  • AnnieB43
    AnnieB43 Member Posts: 724

    Tessu that was just wrong of him to say and you shouldn't apologize for needing to talk about the most in your face things in your life at the moment. Maybe your cancer center has counseling or a support group so you can have a safe place for some support. I wish I could throw my arms around you myself and hug you hard.

  • Greyt2mphrn
    Greyt2mphrn Member Posts: 80

    The problem with feeling this ill is that I am not sick enough to be considered an "emergency" but I feel so horrible that it is hard to sleep. I am sick to my stomach and it is because of a UTI. Or some sort of irritation from the chemo. I will call in the morning but I don't think I'll get much help. I can't do this again. It just hurts too much.

  • tessu
    tessu Member Posts: 1,294

    grey I feel ashamed for complaining when you have so much more to battle than I do. I am so sorry. Try to keep hydrated, to dilute whatever is irritating your bladder (hopefully nothing serious). SEs seem to be worse the first round. I hope you start feeling better soon

  • Cinque
    Cinque Member Posts: 150

    Hi Annie I get the chemo flu each round I also got tinnitus.  The doctor said it will go away when I finish treatment.  The whole thing sucks I cant wait to finish but Im wondering what long term side effects this has on our bodies.  Sorry to sound negative feeling really low at the moment.  

  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316

    edwsmom - I bought several caps prepping for hair loss.

    I recommend what has become my surprise favorite if you have overheating problems. It's a tube-shaped piece I double and use as a cap. There's enough overage to fold the top. It looks like a loose cap. But I can open the top if I'm overheating. (Plus I'll probably use it as a neck warmer when it gets colder up here in Frostbite Falls.)

    Here's a link to one I'm happy with: http://www.llbean.com/llb/shop/85494?page=merino-wool-buff-headwear&feat=90702-pprrright

  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316

    Tessu - I am here to chat with you about positive topics! I would love to hear about your craft attempts, science, politics, whatever. I don't know if there is a direct message function on this board - if there is, shoot me a note. You can also find me on Twitter (@footenotes) - I know direct messages work there!

    (By the way, Helsinki is one of my favorite cities in the world. : ))

    PS Anyone else on Twitter? I'm active there and would enjoy connecting. If you like old movies (TCM), hit me up - there's a fun group who live-tweet films, which can be a positive distraction when I'm not feeling great.

  • tessu
    tessu Member Posts: 1,294

    Cinque: Thank you for mentioning tinnitus. I've had that since childhood, but since starting chemo, mine has gotten much worse. Hopefully that's one of the SE that are only temporary

  • Aga
    Aga Member Posts: 77

    Scotland are you getting your flu shot?  I thought it is recommended that chemo patients do not get flu shots?

    Is anyone getting a flu shot while on chemo ? 

    Grey yes there is hypoallergenic tape for your port you should ask for it!  Hugs

  • tessu
    tessu Member Posts: 1,294

    Aga, yes I'm getting a flu shot. My MO said it is safe, but will not be as effective during chemo. Heck, I'll take even a little bit of protection ---- the one year I didn't get vaccinated, I was so sick I was bedbound for days with high fever etc.

    I was instructed to get the flu shot two days before my next round of chemo --- so, tomorrow --- so that my white blood cells are at their best. Hope that helps :)


  • AnnieB43
    AnnieB43 Member Posts: 724

    I got a flu shot the week before my first round.

    I had that uti feeling with first round. I used a soda bottle filled with warm water and washed after I peed. It helped a lot. I also go the uti test strips from the pharmacy and checked periodically to see if it was a uti or just irritation from chemo. It was the taxotere because I never got it this second round.

  • AnnieB43
    AnnieB43 Member Posts: 724

    We have several absent friends lately. I hope everyone is ok and getting better.

  • flower68
    flower68 Member Posts: 114

    Good morning Aga

    I got my flu shot as soon as my white count was back up and my MO gave me the OK, actually cancer patients are advised to get the shot.

  • flower68
    flower68 Member Posts: 114

    Good morning September ladies

    Busy thread as I see

    Tried to read a little between patients

    Hope everyone is doing fine

    Whish you all the best and hugs to all of you.

    Flower

  • Minnesota_LisaFR
    Minnesota_LisaFR Member Posts: 316

    Aga - Like Flower68, I got my flu shot. My provider actually asked pre-round 2 if I wanted one. They gave it during round 2.

  • Greyt2mphrn
    Greyt2mphrn Member Posts: 80

    I give up. I can't keep anything down. My back is killing me and I am so dizzy. I called my MO office. Hopefully they can give me something to settle my stomach. I have taken my Zofran and compazine on top of the other drugs they gave me during chemo but nothing seems to work. My friend is going to drop me off at the hospital if I need to go. I feel like someone hit me with a car. I hope everyone has a great week!

  • LindyC
    LindyC Member Posts: 210

    Grey..I had that last week. I just wanted to give up. I took everything I had (meds) and also had a few puffs of marijuana and went to sleep for most of the day. Did it again for the next few days and somehow managed to get through it. I'm in my "good" week now and have my 4th infusion on thursday and get to do this all over again. At least, this time, I know that there may be a few options to help. It's all trial and error and somehow the days pass. Don't give up. We're all muddling through this.

  • luzeelu
    luzeelu Member Posts: 83

    Finally starting to crawl out of the weekend fog now, one week after the 4th and final round of AC. I am so glad to have that nasty stuff behind me. Each time it's taken a bit longer to feel like "normal," whatever that word means these days. It's been very chilly here and I'm cold all the time. At least food and water are beginning to taste OK again. I know I'm not eating and drinking enough on the bad days.

    I start Taxol next Monday, the 26th, for 12 weeks. The MO said that she might cut it short a round or two if I show signs of developing neuropathy. Can anyone tell me any other potential issues with Taxol? The doc said it wouldn't be as awful as what I've been calling "red devil piss." I hope not. There are so many miles to go...

  • LindyC
    LindyC Member Posts: 210

    luzeelu...I'm just behind you in the start of the same treatment plan. My plan is dose dense, every 2 weeks and my last AC is this Thursday. I only have 4 Taxol scheduled so it will be interesting to see how well or badly I'm affected. I'll be watching for your reports on Taxol and hope they aren't too bad. Having the MO say so is encouraging.

  • TFoxy20
    TFoxy20 Member Posts: 47

    Tessu- I feel like all I have to talk to my husband about is cancer or SE's. He never has said anything but I have wondered if he thinks it. I am a SAHM and haven't been doing anything exciting lately. I have my daughters 2nd birthday to plan which keeps me distracted some. This is our life right now. It can be pretty consuming.

    I had my second round of TC on Friday. I gave ino and decided to try switching up the nausea meds since they think Aloxi caused the headache/migraines for a week after the first round. I am not 100% convinced that it was Aloxi. I have heartburn, nausea and a little bit of D that I didn't have last time. Also woke up at 230 to decent headache. I never get headaches so it has to be related. Since I felt decent the weekend after first infusion I agreed to let my husband switch out our shower for a bathtub. Great until he unhooked the toilet and a few hors later my stomach started cramping. It is still unhooked as I type this. Thankfully we have woods to go out to but close enough neighbors to make it awkward during day.

    I have yet to wear my wig out. It has long bangs and I haven't had time to figure out a way to keep them out of my face. I love it and am afraid of screwing it up. I have been going out in my chemo beanie. I never thought I would do that....ever. My halo should get here today and I hope I love it as much as you ladies that have it.

  • TFoxy20
    TFoxy20 Member Posts: 47

    Grey-although chemo doesn't come with SE's definitely talk to your MO about what you are experiencing. Maybe they can tweak things for next round. Or give you something else to manage SE's you are having. I feel like this process is cruel. You have to intentionally make yourself do something that makes you miserable over over again. It sucks in the short term but it is better for the long term. You can do this.

  • LindyC
    LindyC Member Posts: 210

    I commented to my husband on how I am sad and disappointed that this cancer treatment seems to have taken over my life and everything hinges on treatments, drugs and how I feel. He just looked at me and shook his head and said "really, seriously, how could it not" and laughed...hahahah..ya, it was a ridiculous statement.

  • Shopgal2
    Shopgal2 Member Posts: 594

    lindy have an easy last AC this thurs. like luzeelu I'm so glad I'm done and scared of taxol next wed. My 4th round definitely caught up to me. Still dragging this morning with an awful headache that woke me out of sleep last nite. Gotta hate that. But I'm gonna make the most of this week. It's a beautiful fall morning on the east coast. My lawn is getting covered with leaves.

    I did get my flu shot from my mo nurse right before my 3rd infusion. They did say it may not be effective because of the chemo.

    MinnesotaLisa I also love my buffs. They are my preferred head covering. I got a version of them from Walmart for $2.88. It's a tube of soft jersey material that you slip over your head and tuck the ends under at the back of your head. I found them in the accessories department. I watched a video on head covers.com that shows how to wear their version of the buff. I also ordered a boho bandeau from natural life's website.



  • octogirl
    octogirl Member Posts: 2,434

    When I first found out that I was going to have chemo, I remember telling a friend who said, 'oh ugh, but you will breeze through it.' and I clearly remember thinking, 'how can you know that?'...then after the first round I wondered if she was right, because I did seem to have minimal side effects compared to many, was able to continue walking, working, etc.....

    Today, I feel that she was wrong. Many of the side effects have been relatively manageable, but I am exhausted and very dispirited. I spent the weekend basically napping and crying and feeling sorry for myself....when I wasn't arguing with hubby, that is. Mentally, it is very hard to stay in the game when I want to just crawl into a corner and collapse. A friend who has been through it told me that there is no way around it, you just have to go through it. So going to try to just get through today and Round Three. One day at a time, just get through it. worry about tomorrow tomorrow. Easier to say than to do, I know.

    It would help if the Cubbies or the Jays would win a game (bad attempt at humor there..:-))

    Hugs to all!

    Octogirl

  • LindyC
    LindyC Member Posts: 210

    Octogirl..it just sucks and I'm barely halfway through it...maybe the new normal for me is to feel like shit.

    And I'm going to the Jays/Royals game tonight. Sheesh boys...this is the only thing that keeps me going and out of the house so they better start winning. What the heck is going on with the Cubs? We are supposed to have a Cubs/Jays world series...oh well, as we all know, things don't always work out like we hope they will.

  • edwsmom
    edwsmom Member Posts: 270

    Lindy,

    I feel the same way about being sad that it's taken over my life. There's so much going on and so much to do and I feel like I can't make any fun future plans to look forward to (like a vacation). Right now I'm just barely keeping all the balls in the air with working full-time, my toddler and household maintenance.

    BTW - do you remember what color you ordered in that wig? It's really pretty. Very tough to tell what colors look like in real life when ordering on wigs.com.

    Just when I thought that this week would be the good week, after 2 days of no Big D, it came back yesterday and this morning with a vengeance. I'm so frustrated. I am alternating immodium and lomotil. I just want to go back home and go to sleep.

    Thanks for the suggestion Minnesota. What do they look like on? So far I have only done hats and caps at home. Not out in public.

  • LindyC
    LindyC Member Posts: 210

    edwsmom..I went with a dark brown, a bit darker than my natural (haha) ok, highlighted normal look. It is very realistic. I believe it is 8H on the colour chart.

    My full wig was colour matched to my normal colour and is a bit lighter. The headband wig is a nice change.