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Just really sad

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kaynotrealname
kaynotrealname Member Posts: 366

I am mourning today I think. Had my first chemo session a little over three weeks ago and it went fine. The day before my second I started the routine again of taking my steroids with a fasting bar and then continuing to fast through the day. Five and a half hours after taking my steroid I suddenly developed stroke like symptoms severe enough for my oldest child to call 911. Her last words to me were a desperate hug and a please don't die then I was loaded up in the ambulance. There they did scans and tests, my first ones by the way since I'm considered early stage, so I was especially a wreak. Found a small white lesion on my brain on the CT scan that night and we had to wait until the next morning to clear it. It was cleared but everyone here I'm sure knew what I was fearing and how that fear felt. Anyway, all my tests came back fine. No stroke happened, no stroke is about to happen, and I have no cancer in my brain. White lesion was a common incremental finding. They think I had a severe reaction to my steroid dose so my oncologist cut it down by half and rescheduled me for chemo on Monday. Will probably end up rescheduling again since that doesn't give me enough time to recover before a planned week vacation we desperately need and the first question since my oncologist is off and I can't reach her is if anyone knows whether a delay should be an issue with chemo being given as what I've been told is termed as "mop up"? Secondly, this isn't a question but more a muse. I'm just really sad and depressed today. Despite cold capping, most of my hair is gone and I hate what I see in the mirror. Physically I feel fine and I know I'm lucky but mentally I'm just struggling with the deep down to the bone knowledge that nothing about this journey is ever going to be predictable. Or even end. Not really. I could be doing perfectly well and then suddenly not be able to move my arm for instance. I could do everything to prepare to come out of something relatively unscathed and could still lose my hair. Life as I knew it is over for me. I guess it's always been like that maybe and I just didn't know it. But knowing it, really knowing it, is very hard today. Thanks for listening.

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  • lw422
    lw422 Member Posts: 1,399
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    Sorry you're going through a bad time, Kay. I can tell you that we all understand, and many of us have been in that same place. It's a terrible realization when it finally sinks in that our lives have truly changed forever. I remember thinking if I could just get through treatment and "get back to normal." Hah. Little did I know... "normal" was gone forever. The good news is, that sadness and anxiety will pass. You'll start feeling pretty much like YOU again. Hair will come back, and you'll feel happy. But things are definitely a new normal. Hugs to you.

  • edwards750
    edwards750 Member Posts: 1,568
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    Kay - we hear you. I’m glad you didn’t have a stroke or cancer in your brain.

    I didn’t have chemo so I didn’t lose my hair but my sister did and it was beyond heartbreaking for her and me because she was so upset.

    We didn’t ask for this but somehow we have to find a way to live with it. Understandably you are depressed. I think at some point all of us were and maybe still are. Life as we knew it doesn’t exist anymore and that’s really hard to accept.

    I hated it when people would tell me to look at the bright side but I am 11 years out so there is one for me and there will be for you too.

    We drew the unlucky card but we can either give in to our plight or make the best of it. I know easy to say but it’s been the only thing that has kept me sane all these years.

    So keep the faith and keep us posted.

    Diane

  • edwards750
    edwards750 Member Posts: 1,568
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    Kay - we hear you. I’m glad you didn’t have a stroke or cancer in your brain.

    I didn’t have chemo so I didn’t lose my hair but my sister did and it was beyond heartbreaking for her and me because she was so upset.

    We didn’t ask for this but somehow we have to find a way to live with it. Understandably you are depressed. I think at some point all of us were and maybe still are. Life as we knew it doesn’t exist anymore and that’s really hard to accept.

    I hated it when people would tell me to look at the bright side but I am 11 years out so there is one for me and there will be for you too.

    We drew the unlucky card but we can either give in to our plight or make the best of it. I know easy to say but it’s been the only thing that has kept me sane all these years.

    So keep the faith and keep us posted.

    Diane

  • monarchandthemilkweed
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    I'm a year out from my last chemo. I didn't cold cap and of course lost all of my hair and eyebrows and eyelashes. My hair came back CURLY and let me tell you how hard that's been for me. Because like you said I look in the mirror and I don't recognize myself. I can't help but wonder how much quicker would I have been able to recover emotionally if I had kept my hair. My hair is short and curly and while people tell me it's cute, it's not a style I'd have ever chosen for myself. at 46, I feel like I look like a granny. Anyhow what's helped me though through all of the ups and downs of breast cancer and life after, is to do the things that I have always loved to do. I stopped baking cakes when I was going through the surgeries and chemo- and this summer I started baking again and the cakes were so good! Just like they used to be! It felt amazing to remember who I am.

    But there are ways that our lives (and ourselves) are forever changed. I think that's what you're realizing. Right before my implant surgery I had to have a chest x ray. They saw a spot on my lungs. Couldn't say what the spot was. I was sent off for more imaging. Turns out the spot was not cancer. But that experience more scary - terrifying in fact-than when I was first diagnosed with cancer. This life that we now live - as a cancer survivor- is different. But it will become your new normal. I promise you, you will feel like yourself again. You will be happy. Life will feel good and right again.

    Take care

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    It helps to know there are people who understand. And yes that wait to find out whether that spot was anything to worry about or not about did us in. I think I'm mourning feeling that way, too. No one should have to feel that way but we do in cancer world. It's not even uncommon. Anyway I'll adjust. Balance is much better today, physically I feel fine, and I also know to the core of my being that it could be much worse. At some point I'll feel that way, too, and it will lift my spirits. But today I am sad. I hate this. I don't hate my body. I hope it continues doing mostly well. But I hate that I can't control it. I hate that I can't control THIS.

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    I'll make the best of it I'm sure. Eventually :)

  • sarahmaude
    sarahmaude Member Posts: 336
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    kaynotrealname, I can truly relate. I think I’ve had every negative emotion there is over the last six months since my diagnosis. I also felt really sad around the time into chemo you are. I didn’t have your scary reaction, but was very neutropenic and had unexplained pulsating pain in my neck and back. I lost a lot of hair in that cycle also despite cold capping. That hair loss was much harder than I expected it to be. I agree that with BC we lose something of our identity that never comes back. That feeling of being a pretty healthy person with many years of being so is certainly rocked.

    In addition to being sad, I also have gone through periods of anger as well. Some of the things that make angry seem relatively minor, but I know that the root of my negative feelings is cancer. Fatigue, pain, insomnia, and more. Chemo itself is an exhausting and frightening experience. Overall, and in hindsight now, it was manageable. But it’s a lot.

    Know that you aren’t alone in your feelings. None of us have the same experience, but many of us can relate in a way that our friends and family cannot. If you aren’t taking antidepressants now, I would encourage you to discuss them with your MO. They definitely helped me recover from the worst of my sadness and anxiety.

    The fact that there is hope and light at the end of the treatment tunnel has been helpful to me. Seeing the many people here who have passed treatment and are able to resume a healthful and rich life is also something that keeps me going. I have challenged myself to seek something good in every day. If I remember to look, I can find those thin slices of joy. My hope for you is that you find many, and that as you pass treatment milestones, you will see more and more of a new and positivity sense of self and that the sadness will pass.

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    Thank you. I'm on an anti-depressant and have a therapist, too. It's just been a really bad weekend trying to adjust to my new reality. It may seem mild to some but my hair loss I think has affected me as much going into the hospital. Now I look sick and no longer like myself. It messes with you.

  • btwnstars
    btwnstars Member Posts: 81
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    I'm sorry you are having a tough time kaynotrealname. You are at the start of it, so there's a lot of emotions, ups & downs... Being sad, frustrated, angry...all normal! I was going to say, until I saw you mention it...it's not that your life is over, but what you *thought* you controlled and prepared for may be for the time being.

    One thing cancer helped me realize, is that I had a false sense of control, karma, preparation, etc. Because none of us did anything to get cancer. Now we have to sort through all of these emotions and what ifs?...Complications and setbacks of treatment can be so frustrating. I am glad you were cleared, but I am sure that was scary. Give yourself credit for making it thru that and moving forward. Celebrate the small wins!

    I am a year out from chemo and I remember feeling/thinking the way you do too. I was so afraid of never feeling myself again or being able to do what I did before. I've been fortunate, even though it was slow going and there are still adjustments to endocrine therapy, I actually do feel a lot like myself on the inside. I don't look like I used to. But I've found strength & spirit in knowing what I went thru and have used that to propel to where I want to be now. I also find myself letting go a bit more not being so hardened to things and being way less judgmental towards others.

    I, like monarch, have the crazy curly hair that is not me and I do not like...but I've found a deeper sense of self. I try to remember what I survived and know that hair is temporary and I will make it work eventually.

    Be gentle with yourself, ask for help, don't be afraid to say no & put up boundaries...honestly all things we as women/caretakers should do anyways, but now you have a super valid excuse!

    Hope you feel better soon and treatments go well.

  • kotchaj
    kotchaj Member Posts: 209
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    kaynotrealname, Oh girl, yes, yes, yes. Every day is a new thing. I feel like I've been thrown into a club I didn't want to join, no one on here does, and then on top of that I've been thrown onto a roller coaster blindfolded. Little things that I used to take for granted, I can't anymore. Yes, I appreciate the little things a lot more, but there is also something to be said for that naïve feeling that things are okay and if something little happens, it's not life altering like they are now. I miss that feeling. Instead of walking down a road, I most of the time feel like I'm in a mine field just waiting to step on the next bomb. It's so very hard. Not all days are like that, but a lot of them are. I won't hit my year of chemo ending until November.

    My hair, eyelashes and eyebrows were the absolute worst thing that could've happened. I didn't cold cap, because I read so many conflicting things on it and lost all of my hair. I actually had curly hair pre chemo and now my hair is somewhat straight and is sticking out all over my head in a combination of curls and straight hair. It ain't pretty.

    Sending you big hugs.

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    Oh Kotchaj. I'm so sorry. Because I know how bad it feels. I know we never had control and it was all an illusion. Intellectually. But to know it in my heart is a tough, tough thing. I think your walking a mine field analogy is quite apt. That's what life feels like now. I hope we get used to it and move on somewhat after treatment is done. On another note, my oldest has curly, curly hair and there is actually a method of dealing with it. If anyone needs some advice on how to work with curly hair let me know. That girl has managed to make her frizzy, weird wavy hair into the most luscious looking curls on her head. But it took work and some knowledge. Curly hair cannot be managed like straight or wavy.

    I also did decide to do chemo today. I went to meet with my oncologist and she said she'd do it. So of course I wasn't going to go against her. I like my oncologist and trust her and my bloodwork was fine. She also gave me some good direction on how to manage bone pain and answered my question on the recent studies that have come out saying those with a lumpectomy and radiation do better than mastectomy patients (they believe it has to do with complications. People with mastectomies tend to have more complications but if you didn't, you should have the same statistics as the lumpectomy folks). Anyway I'm a little worried that I won't be recovered enough for our trip but I told my husband if not he could just throw me a plastic bag and load me into the trunk with the luggage. I'll figure out a way to deal because that's pretty much life now. Figuring out how to deal with crap. But it was actually quite helpful mentally. I guess like jumping back on a horse that bucked you off and then riding the hell out of it. I didn't take my steroids yesterday because I had no idea I was going to end up doing chemo today. I thought we'd end up rescheduling. But they gave me IV steroids before my infusion, the infusion itself went much better and I'm 50% done. That feels good to say. I did have a reaction to my IV steroids severe enough that for a second we thought I was having an allergic reaction to taxotere. But it resolved enough to quickly move on and I'm kind of glad it happened. More proof that steroids were the culprit last week and not something else going on with my body. I may or may not try to skip them tomorrow. I hate that reaction after all. Like you can't breathe correctly for a minute and you get really dizzy. The dizziness lasts for an hour or so but luckily I figured out pretty quickly my lungs were fine. Almost like an adrenalin rush at first. It's a sudden whoosh and you're having a reaction. Anyway tomorrow I'll be by myself so I don't know what I'll do. Anybody know how it works when you skip steroids? I'll only do a half dose even if I do take them but it still makes me nervous. My body either really, really likes them or really, really despises them.

  • Racy
    Racy Member Posts: 974
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    Hi, being diagnosed and starting treatment is a really difficult time. Don't underestimate the help that can be given by an antidepressant and/or psychological counselling. These two measures helped me immensely. As an aside, the antidepressant Efexor also relieves hot flashes, if that is an issue for you.

    Take care and I hope your treatment continues smoothly and you get any additional help you need. You deserve to have your sadness relieved.

  • windwalker27
    windwalker27 Member Posts: 54
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    Kay, I am in the same boat. Just started my chemo (8/25-first infusion). I discovered one interesting thing. My onc has prescribed one anti-nausea pill that is actually a low dose anti-psychotic. I sleep well, and bad thoughts don’t bother me either. Olanzapine is the name.

    I have a question to our community. When after the first infusion the hair falls out? Or it takes a couple of infusions?

    Have a wonderful day everyone,

    Windwalke

  • specialk
    specialk Member Posts: 9,221
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    windwalker - most start to see hair loss with multi agent chemo regimens typically at 14-18 days. Some people cut their hair short in advance if their hair is long, or buzz it at that point. Many salons will buzz it for you free of charge, but I already had clippers since my DH spent 28 years in the military - he buzzed it for me. I had six infusions of TCH, and did not lose my hair on schedule - it stayed until day 24, so fully a third of the time I was receiving chemo. My hair looked totally normal through two chemo infusions, and I did not buzz it until it was coming out in quantity. I had cut it short in advance of starting chemo - it was almost to my waist. I did this because I had the hair made into a hairpiece by these folks, who happen to be in my town, but they ship everywhere. I had a regular wig that was styled much like my regular hairstyle, but I loved this hairpiece because it was my own hair.

    https://chemodiva.com/

    People on single agent Taxol sometimes have more hair thinning initially, rather than overt hair loss, and can sometimes buzz much later if their hair was thick to start with.

  • windwalker27
    windwalker27 Member Posts: 54
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    Thank you Specialk! I am going to explore

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    I am on the T/C regimen and started noticing severe shedding around the 15th day after the first infusion. I have thick hair though so I avoided buzzing until the 22nd day when I finally realized I was going to lose most of it. No idea how much will go but I on my second round of chemo I realized that the nurse didn't have me cold cap long enough on my first round. I'm sure that's why I'm losing most of it. But not all of it's going to go so there's that I guess. It looks like crap but I can cover it with a hat right now and go about my day without stares. I consider my look the "molting chicken look". Don't recommend ;) And thank you, Windwalker, on the suggestion for the anti-nausea!!

  • windwalker27
    windwalker27 Member Posts: 54
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    Thank you, Kay. I am going to wait with cutting my hair until I look awful. I love yoursense of humor, Kay!

  • kaynotrealname
    kaynotrealname Member Posts: 366
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    Well some days I feel that's all I have left so I might as well poke fun at it all.

    "If my life wasn't funny it would just be true, and that is unacceptable."
    Carrie Fisher