Starting Chemo July 2019
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I didn't have a port. It was needle pokes each time to start an IV. My choice.
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with my flat chest and scruffy bald head I’m a loin cloth away from a killer Gollum ( Lord of the Rings) costume!!
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I see you dvhmouse and britgirls
Britgirls you’re beautiful! 😊
dvhmouse My mother in law has one and you can’t even tell it’s there. I just knew from day 1 mine would cause trouble. I wish there was a better placement option.
2019whatayear 😂 we should all dress as Gollum's! 😁
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It's been a while since I've been on here and every time I wonder why I wait so long. I read through your posts and many of them could be my own. I'm on my fifth round of Taxol - and if it weren't for feeling so depressed, I would probably be able to function okay. I've had some bone pain that is just this deep ache, very similar to when I was being given the shot with the first set of chemo. I have a bit of numbness in my right hand but it's not much different than when I spend too much time at the computer. I just don't have much motivation - I have all these emotions going through me and am not real sure how to deal with them.
One thing that has been really hard for me lately is my husband. He just really doesn't get it. He's a great guy but has never been the type to sit and talk about things. And I have stuff to get off my chest (pun intended). I have seven more treatments, and then god only knows what will be next or how I will recover but the one thing I know for certain is I will never be the same. There is no way to go through this and not end up with a new normal. Now he "just wants to get through this so things can get back to normal." And over the last few weeks, it has really hit me that his normal and my new normal most likely won't be the same. And since our marriage has never been one with deep communication - I can't talk to him. If I tell him "what if it's not working?" he says "It's working". If I say "I'm struggling right now" he says "With what?" It's all very dismissive. Of course I have my friends and sister who are supportive but it's not the same.
This journey for me is much deeper than "Let's just get through this." It has made me reflect on who I am and what I want from this life. It has made me realize some things about myself such as living in a place of regret and anxiety that have wasted years and moments of time that I will never get back. And it's made me determined to come through this a healthier, happier version of who I want to be. I want to survive so I can live - if that makes sense - and hubby "just wants to get through it". It makes me sad.
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deanders We understand. Hoping that you find a great doctor who gets it and will understand what you're going through too.Unfortunately depression is a part of this disease. I told three people today that I’m living “my new normal”. Of course that means different things to different people. Just know that we are here for you. You will get to that happier, healthier version of yourself - one moment at a time. Hugs!💕😊💕😊💕😊💕😊💕😊💕😊
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deanders I get it! I've posted early on about my husband. He is oblivious to what is going on and his part in this. I too have my sister and a few friends that are my people and are my ride or does BUT ITS NOT THE SAME. We need our husbands to be there for us, hold us, love us, tell us it's going to be ok. I've told him 100000000 times I am alone and fighting this alone. Itts like he doesn't see it and looks like a deer in the head lights. I've done all treatments alone, I've been in bed wanting to die alone, I've taken care of this house alone. But again he doesn't see it. I try to explain it to him and he acts like he's been there and what else do I need. So I get it. IT SUCKS. But at this point I do what I have to do and keep going. Continue to push through, be true to yourself, and know you have others to help you through this. It sucks that the one person we really need and want to be the one isn't. 💕💕💕 I kept telling myself I don't have the emotions or energy to continue to try to make him understand. He is grown and he has a choice.
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deanders, so sorry your experience has been so difficult! I’m lucky, I have a really supportive husband, though we’ve also not talked about “what this means going forward.” But I think I’m as much to blame as he is. As others have said, though, you have to make your own “new normal” and be proud of what you’ve accomplished and learned throughout this journey. You have our support and we’re cheering you on!
Has anyone that lost all of your hair, said “screw it” and gone bare-headed in public? I’ve started to this week after shaving my scalp to tidy up and exert some control. It’s still kind of awkward for me though.
Diane
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I shaved mine as soon as it started coming out nexuses it hurt. Guess my pores maybe 🤷🏼♀️🤷🏼♀️ Plus the hair was going everywhere. I have not gone out without a hat because I don’t feel comfortable. But that’s just me. I can say here in NC we have had a couple of mornings or nights that are cold and BBBBRRRRRR the head was COLD 😂😂
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Re: Halloween. No Gollum's! It's too cold out now for the full bald. Halloween is the perfect time to enjoy wearing a wig! I'm going as a skeleton or a zombie ... I will very much enjoy making people feel EXTRA awkward when they roll out the "How are you???" question that I am beyond sick of hearing. Me: "Do I look well to you?"
Deanders, you are not alone. I'm really glad you checked in here and shared how you're feeling. It might be that your husband is just never going to "get it" and you have to get the support you need from elsewhere (close friends, a support group). I feel like my husband is the same way, just feeling that this is a temporary thing and everything will revert to normal. That doesn't happen ... a thing this major makes us evolve and our priorities change. With my first cancer scare in 2014 I could not wait to be cleared to exercise after surgery. It kicked off the first time in my life that I was consistently exercising. I so wanted to be healthy. No regrets at all. It didn't prevent cancer from coming back, but I found workout pals and an enjoyment of exercise that I'd never had before. It also made me look at my bucket list and live more in the moment. That's the gift of cancer. We are not wasting a moment of time, as we know life can change in an instant.
Lots of love to every one of you, and here's to a fun Halloween weekend. Maybe we can post costume pics?
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l love this show on Netflix called Dark so I am dressing as one of the characters -Jonah it’s basically a yellow raincoat and a short blonde wig.
My husband has enjoyed very limited changes in his life due to my cancer. Sometimes I have to remind him how good he has it. I don’t think he will ever get it - but I don’t think I would get it if the situation was reversed . He would also be a terrible Hot mess!
I mentioned it earlier but just another plug - if you would like support from someone who has been thru cancer and truly gets it - consider sigining up for Imerman’s angels mentor program - free one on one support.
Also come here and vent away! No worry is silly to me ! No body issue is TMI ! No frustration is petty here! We are here for you!
Diane- ouch ouch ouch on that stupid port! I don’t go baldy . My ears get cold so fast!
Britgirls- my nurse said there is something they can put in your port called cath shot - they inject it in the port and then they wait 1/2 hour and it breaks up what is in the port blocking the pull effort needed to get your blood .
One thing I need to remember -my husband is like my teenagers if I want them to do something I have to tell them specifically what I want them to do and then they will do it. So I need to be asking for what I need from the hubs as well as the kids!
Jpope we lived in far southwest NC for a couple years those mountain mornings are chilly!
-typing from the treatment chair :-) #taxolthursday -not as fun as #thirstythursday
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Had a beautiful sky and 44 degrees this am! Hope you have a great day!!
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beautiful sky!
Here is pic from 2009 -Halloween kids they were so cute 10 years passed toooooooo fast
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Today - Taxol #7 is done! I will handle this week's SEs the best that I can. I will not be hard on myself. I will ask for help when I need it. I will show myself love, compassion, and respect. I will take one day at a time and will speak my truth. I will not consider my emotions a sign of weakness. I will put my health and healing first and will not feel guilty about not being the best mother, friend, cook,housekeeper and employee of the month. My health and wellness is important! I am worthy!
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2019whatayear great pic!! I hope your next couple of days are easier than they have been 💕💕
Melmax YOU ARE ALL THAT AND MORE!!! We are all that and more! We have been through and going through things many can't ever imagine and are still here, fighting like hell, continuing to push through, continuing to push to be some type of our normal selves and routines, and so much more.
I'm so thankful for our group, for each and everyone of you. I'm thankful for the truthfulness, trust, and understanding that we have. I think sometimes it's hard for me to be honest with people around me because I don't want them to know and worry, to be a burden when they have things of their own to worry and deal with and it's easier for me to run to my group and talk, vent, ,rant, or get opinions because you understand and know the depth of what's going on inside and out. For that I am thankful!
Got the phone call today December 5th is my DIEP Flap surgery date. I've been so determined to get this done this year, to be done with all this and start fresh in 2020 no stopping me now attinow I think I'm scared to death lol.
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jjpope1 - exactly! I'd like to second that statement.
Diane
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Melmax! I love your mantra! I just finished Taxol #6. I will save it & read every morning
They had to cut the dose by 20% today due to elevated liver enzymes.
My side effects so far on Taxol have been fatigue. I have to sleep & rest at 10 hours every night & I am having a hard time waking up in the morning. I also have deep bone & body pain, hot flashes, cranky AF, forgetfullness, insomnia from the 'roids, & I think that's it...wayyyy better for me than AC! Just recently I started acupuncture & I really like it. I also went to an in person cancer support group. Since I generally feel better, I've been taking walks. I am going to start a yoga for cancer class next week. I take tylenol with claritan, tylenol with codeine or percocet if the pain is very bad. I'm working 2 days per week but that may go up to 3 if all goes well. I haven't had any signs of neuropathy thank goodness. I ice my hands & feet during treatment plus I take b6, glutamine, & alpha lepoic acid to hopefully help keep it away. All of this stuff is super helpful for me.
Not sure if your husbands like to read books but mine read "Breast Cancer Husband" by Marc Silver. He really learned a lot from it but that was at the very beginning of treatment.
I don't rock the bald in public because I'm not that confident doing so. I typically wear scarves or bandanas because the wigs are so hot with these damn hot flashes. I did answer the door bald the other day for the pizza guy because I forgot.
I had 2 surgeries prior to chemo. I chose a right side mastectomy with an expander for future reconstruction. The unaffected boob will be lifted for symmetry when that surgery happens next year. My tumor grew too much to get a lumpectomy or I would have gone that route as my cancer isn't genetic. My surgeon told me many times that recurrence chances are the about the same for both.
Halloween is my fav holiday but I'm not into it this year. I might do a slothicorn as a costume because they are my spirit animal right now - slow & magical!
My 22 year old daughter & husband dressing up as Hopper & Eleven from Stranger Things.
So much love to all you ladies! I haven't posted in a while but I've been reading your posts. I hope you all have the best weekend ever!
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💖💖💖 jjpope1 Wrote: “....I think sometimes it's hard for me to be honest with people around me because I don't want them to know and worry, to be a burden when they have things of their own to worry and deal with and it's easier for me to run to my group and talk, vent, ,rant, or get opinions because you understand and know the depth of what's going on inside and out. For that I am thankful!" 💖💖💖
If you feel the same, raise your hand 🙋🏼🙋🏼🙋🏼
So glad your surgery has been scheduled and you'll get to start the new year your way! 🤗
Starr42 Super job taking care of yourself!!!!! Very helpful ideas and info. Thanks!
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My hand is raised sky high. Same. I feel compelled to make people feel better! Don't want them worrying about me or thinking I'm frail or dying,
Starr42- walking is awesome! Glad you are getting out there even with the fatigue!
Jjpope your surgery is the same day as my last Taxol. It is going to be a great day for us both!
Melmax I love what you write so much!!! xoxox
I have built up my strength and stamina and thanks to the boost of steriod energy I was able to run 3 miles today. It was glorious.
Happy Friday All! I hope everyone is able to treat themselves in some way today!
-Victoria
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I hope everyone is having a great day 💕💕
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Not so great. It looks like I’m going to have to continue chemo after healing from surgery. The MO did not like the fact that my tumor only shrunk 4mm after 12 weeks of Taxol+Herceptin+Perjeta. Probably looking at either TDM1 (Kadcycla) or AC+Herceptin. Whimper... I really don’t want to have to go through this again
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dvhmouse I love you and I’m so sorry to hear this. I know you feel like it keeps hitting you from every direction. Keep pushing through. I’m always here if you need anything. DM me! Extra prayers for you tonight, not only for healing but for mental and physical strength. 💕💕
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A lil pic of my Max to make you smile
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Very cute!
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dvhmouse
That’s something I never thought would happen especially since you’re having a mastectomy. I will never understand treatment for breast cancer. Nothing makes sense to me.💕My heart truly goes out to you 💕
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Sending big hugs dvhmouse
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dvh, I’m sorry. That is rough to have to go through chemo again. I guess they were trying to get that tumor reduced and make the surgery easier. I don’t know why they wouldn’t just take it all out first and then do chemo. It is frustrating that there are so many variables in treatment. I like to have a plan and stick to it.
Today I’m getting taxol 9 of 12. They got blood return right away!! I guess the pain last week of waiting 2.5 hours for the cathflo (alteplase) to work was worth it in the end! 🙄
Wishing you all a good day and manageable side effects0 -
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Man that blows Diane. Almost wish you would have had the A/C first if you are going to get stuck with it anyway. If you need anything I'm close to you. Just lmk! Any time! How soon do you get to have the surgery? Like Britgirls I really like to have a plan and stick with said plan. So many frustrating things have happened along this path for you Diane- it truly sucks, I hope this is the last curve ball.
Glad the port worked this week Britgirls you are in the home stretch!
Last night I realized that from here on out I can watch Lifetime Christmas movies during my taxol thursday, This makes me happy, I don't have cable at home ! I do have the Hallmark Channel Now streaming service to give you an idea of how much I enjoy christmas movies. :-) This realization was a nice bright spot after I had had a little mental freak out earlier in the day when I was typing some info at work about 2026 and my brain decided to say. 2026, hm no guarantees I'll be alive then. Stupid brain.
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Ooooh, Lifetime Xmas movies ... Hallmark Xmas movies!! It's so easy to go down that rabbit hole! This was on Colbert last night:
BTW, my go to show for chemo is Miss Fisher's Murder Mysteries. It is not on Netflix anymore! Doh! So I'm watching it on Acorn TV through Amazon Prime. Amazing show.
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Christmas movies are like comfort food for my brain. A soothing distraction that always has a happy ending.
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