December 2012 chemo group
Comments
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Good luck with radiation FriendGwen! I hope that your fatigue improves, despite the rads.
Interesting about your water retention. I don't feel like I'm retaining water, but I'd like to believe that's the case because it would mean there is hope for some weight loss in my future! (The needle on the scale is not budging, sadly).
Be well.
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Gwen and Nichole - I had the fatigue you mentioned right around 3 weeks after PFC. It was almost like my body was expecting another chemo and when I didn't get one it kind of said - well I think I will be tired now instead. I am 6.5 weeks PFC now and doing much better although still have some stiffness and the strength in my legs is still not there despite lots of walking and even hill climing on my bike . But my goodness - it really has only been a little over 6 weeks - ( I tend to be kind of impatient
Hair growth is painfull slow too - boo hoo ....
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FriendGwen, you are so right bout the vitamin D defence, I wonder if it goes down because Breast cancer when I was diagnosed my vitamin D was severely deficient and I have been on a multivitamin and a additional vitamin D as well. My last chemo was 21 days ago and I am zonked! I am starting to feel better but energy is super low, had a crying jag when I went on line and the great news was give yourself a year I was crying hard saying but this took a year. I know this will all pass and I am learning patience, to be quite honest my biggest concern now is trying to shake recurrence fears. I have a good prognosis, I just have read and seen so much, even though I have not posted I was here reading and these posts helped get me through the hardest of treatment knowing you guys were here and that someone understood what I was going through. Have a question for you ladies, please share if you are comfortable, HOW ARE YOUR RELATIONSHIPS, WITH YOUR SIGNIFICANT OTHERS. I am struggling a bit, he acts as if I just had a common cold, and he is so nonchalant about things, I just do not know what is going on and the bad part is I do not care because after trauma like this my patience has been short with dumb things, am I wrong, I feel like I have been given a second chance and stupid things, not saying he is stupid but I want to live my days out happy.....does anyone understand?
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ScarYola, I can sympathize. My ISO (Insignificant Other) has turned out to be very dumb, or merely in denial. I have been trying to get him to see the seriousness of this cancer and, after telling him I have a good reason to be worried since women (and men) die each year from from breast cancer, he pops up with the analogy that he could walk around the corner and get hit by a bus (like 50,000 women die by being hit by buses each year?). I ran out of patience trying to give him a more realistic perspective. He doesn't want to hear it and therefore allows himself to hold back any empathy and concern. His head is buried in the sand. To be fair though, he is suffering from beginning dementia, but has always been a 'me' type of person.
It's times like these that I wish I had family left. But some friends and neighbors are tugging me along, giving me support when it gets too much to deal with, welcome shoulders to cry on. God bless them! Right now, my focus is on staying alive and getting through this and going back to enjoying the beautiful world we have. As for how I deal with my ISO in the future -- we've been together 16 years -- depends much on how I come out of it all, physically and emotionally.
Hang in there, ScarYola! Build up a support group, get well first, and then deal with these painful emotional issues. Focus on getting well. Sending you healing thoughts and prayers.
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ScarYola & encyclias~~I can somewhat relate to what both of you are saying. My DH has always been the type that when something bad comes along, especially dealing with a life threatening disease, he acts like if he ignores it, it will go away.
20 years ago his cousin, who was also his best friend was dx with cancer of the pancreas. He wouldn't call Michael or contact him in any way. I knew he was grieving over it, but didn't know how to handle the situation. We lived in Florida at he time and Michael lived here in Ohio. I finally bought a "Thinking of you card." Jim wrote him a note in the card and mailed it. Michael died days after receiving that card. I was so glad I had insisted on Jim sending it.
He took me to all my post surgery appointments and cleaned my drains, but he doesn't want to talk about this.
I've found over the years (I'm 62) that men always think they're supposed to fix things, so when they can't fix it, it's easier to ignore. That doesn't mean they don't care. Sometimes, it's just their way of dealing.
Blessings
Paula -
<<men always think they're supposed to fix things, so when they can't fix it, it's easier to ignore. That doesn't mean they don't care. Sometimes, it's just their way of dealing.>>
I completely agree, Paula. Those are some wise words!
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Thank you ladies!!! It is so awesome to talk to you all, I never have understood until this diagnosis just how important it is to having someone that understands....The most sound advice that I just read was get over the physical right now and deal with the emotional later, good stuff because the two really do not mix right now, so thanks..... How is everyone doing with recurrence fears, I am trying to have faith I trust God but my mind is always nagging at me, anyone else have similar "issue."
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I've concluded that I have two options. I can worry about it which will do nothing to stop a recurrence but could possibly add stress to my body which could decrease my overall health. Or not worry about it, assume I have done and am doing everything I can to reduce the risk of recurrence, and live my life as if I will die in my sleep at 101. I will do my best to be physically and emotionally strong by following a super healthy diet, getting enough sleep (love that part), taking vitamins, and exercising. Doing all that will keep my mind busy enough with no time to waste on worrying!
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I just took a screenshot of your inspirational post, FriendGwen!
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Hi ladies - yesterday was my last day of radiation. It was a day filled with so many emotions - happiness, scared about this cancer coming back, exhaustion, love, etc. When i was laying on the table for my last radiation....my boyfriend came springing in the room to give me a kiss. How nice! And then when i walked out of the room, my nurses and doctors were standing there clapping and cheering. I burst into tears! It was an incredible feeling of happiness and accomplishment but then also the sense of fear - that i never ever want to go through this again.
I then went up to my MO's afterwards and got my prescription for tamoxifen. Started on it today and reminded myself that this is going to help me more than the chemo or radiation. I know I need to take it and I am not going to second guess it.
Gwen -thanks for your words of wisdom and inspiration!
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Runner, glad you are finished with rads and and starting the Tamoxifen with no apprehension.
Gwen, thanks for your words of encouragement. I don't really want to live to be 101 though. Even if the cancer does not come back again, I have a lot of other body parts that won't make it that long
ScarYola, My DH is great when it comes to laundry, cleaning, being at appointments, even making the bed and cleaning the shower. But he really is not one for talking about what is going on, that is why I am so glad for a number of the threads on this site. The ladies here get what it is like to be afraid, discouraged, frustrated, sick or in pain. They have words of encouragement, knowledge and comfort. No one understands quite like those who have been through it too.
I am 5 weeks PFC and am waiting for some signs of hair to reappear. The taxo-tears are finally subsiding, but the thigh pain is not. Sometimes by the end of the day my thighs are so sore it is hard to climb up into bed. Our bed is a little higher than "normal", but not by that much!
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FriendGwen ~ I'm with LeeA. I think I'm going to tape your post to the cabinet over my cofee pot as a daily reminder about how to live life after chemo.
Runnergirl2013 ~ kisses from a springing boyfriend sound like a perfect way to conclude rads. Congrats! I am starting Tamoxifen next week. Wishing both of us (and our vaginas) good luck!
Bren58~ I am only 2 weeks post final chemo but am also waiting to feel reasonably good again. Frankly, 8 treatments kicked my ass and I am bone weary and bald as a billiard ball. I know it will get better, but I want being done = feeling good and I'm not there yet.
Love you guys! I wrote this on the January chemo board this morning after one of those sisters posted a perfect song to start my day but it is true for you too!
I just want you ladies to know that sometimes you cause water to leak out of my eyes.
That salty water is the physical manifestation of all the gratitude I feel.
Each of you makes my journey so much easier.
Thank you for your humor, your support, your cabana boys, your songs, and your resilience.
Here is the song. I highly recommend it first thing in the morning!
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Hello Ladies and follow warriors - your positive inspirational postings today warm my heart.
Gwen - I am in total agreement about not letting the worrying take over - it just does not do any good. I loved the quote on one of the other ladies bio - worrying is like a rocking chair, it occupies your time but does not take you anywhere ....
Scar Yola - I feel feel your pain in terms of not being able to connect emotionally but I think you are a smart lady to focus on getting better physically first -you have to be selfish sometimes and just heal .... then deal with the emotional stuff later.
Runner Girl - so happy for you - woo hoo ! I have 3 more weeks to go and will be joining in your celebration by popping my first tami pills too !! There is a good thread on " Anyone feel better on tamoxifen" that I have posted on - lots of ladies doing just fine and helping each other out.
Bren and Nicole and Paul and all - we are all getting stronger - I can feel it !!!
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It makes me sad that when I am done when rads I will have no pills or prevention like my ER or PR + sisters. It makes me very scared. There are times that my fear consumes me - not fear for me but fear for my kids - they have been unphased by my current treatments but they are young. Sigh....I know I have a high probability of recurring but it doesn't mean that I will - all I can do is eat good food, exercise, pray, stay focused, try to be positive and continue to listen to my body for symptoms.
Since I am BRCA1+ I am having my hysterectomy on Monday and they are removing my port. I'm pretty excited about removing my port, I feel like it's a step in moving on. A lot of TN MO's make them keep it in a year to three years but my MO is all about removing it. I have my left UMX scheduled for July...I'm going to be a flat sister for a while.
On a happy note Happy Friday! I have had a very productive work week - my brain is working again and things are coming easier. I cleaned the downstairs last night and will do the upstairs today so I can enjoy the weekend with the kids.
Have a good weekend my friends and sisters. xoxo
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jenjenl - I am sorry you get consumed by fear at times - I do as well. I too am triple negative and am struggling with the end of chemo. My final taxol was delayed today because of all the disturbance here in Boston - the office was in lockdown. I do hope they can get me in for Monday. I know we will find a way for our kids to push on through the fear. I fight hard to hide my fear from my husband and kids. To be honest I am downright terrified to end chemo. I have managed to squelch plans for the end of chemo celebration friends had planned for me - I hope gracefully without being rude to them (just claimed I still wasn't feeling well enough for a celebration... maybe at a later date we will have a nice dinner).
Best of luck with your hysterectomy - I hope to get a hysterectomy soon - but I think they don't want to do anything until I get through radiation - not even take my port out! I may insist on the port out sooner though - I find it annoying me more and more every day. You have battled through this phase and I am sure you will find the strength to battle through the fear and worry too. I will pray for you. I will pray for all of you.
M
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Jen Jen - will be thinking good thoughts and saying prayers for your successful surgery Monday. Also happy to hear about your port removal - that will be much more comfortable for u . I can relate to your fears about coming off chemo and feeling wondering that else u can do to protect yourself . I think your strategy of healthy food and more exercise will go a long way - I am doing the same and even though I am a bit tired from rads - I've lost about 7 pounds now and getting stronger every day .
Mfml - wow what a week you've been though there in Boston ! Sure glad things are back to almost normal now and hopefully you can get your final taxol ! Stay strong my friend - you are almost done with the hard part !
Ladies - hope u all are doing well - I know a lot of us are many weeks post chemo and enjoying some "normalness ". I just did a really nice 32 mile bike ride with girlfriends today and then we all met for appetizers and wine - love my friends !! Love to all of u too - hugs !!
Sandy -
jenjen, wishing you all the best for your surgery today. I am sure that getting rid of the port will be wonderful. I know I really don't like the sight or feel of mine.
mfml, I am hoping you can get your final chemo in today. What a great relief it is to have that last one behind you!
Sandra that is awesome that you were able to do a 32 mile bike ride! Sounds like you really are getting back to a fairly normal life.
Wishing all of you wonderful ladies a great week, wherever you are in your course of treatment. We are all getting that much closer to the end of treatments.
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Scar Yola,
My husband is most helpful with concrete things he can do for me. He actually felt better about the whole bc treatment process when he was in charge of recording lymph from my drains after surgery recently.
When we went to the breast surgeon to get my post op path report, we went out to lunch after. Silent tears were running down my face as the path report was not particularly glowing in terms of prognosis. Later on that day I said to him, "that pathology report really bummed me out." "It did?" He asked. I asked, "why did you think I was crying at lunch?" He looked confused. I let it go and talked to people in these forums instead. That is something I've learned to do during this whole BC process.
My husband is not very in touch with his own emotions, so it is hard for him to share in mine many times. I know to the bottom of my heart that he loves me and is doing the best that he can at any given moment. But he has a lot on his plate besides this disease. I thank him for each thing he does for me because I've learned that he needs support and affirmation during this process as much as I do.
As for my pre BC friendships, some have been strengthened during this process and others have begun to wither on the vine. It says more about their tolerance for life-threatening illnesses than it does about me or even them in general, I think. Someone 5 years out from BC treatment told me in the beginning that relationships change during diagnosis and treatment, some for the better and some for the worse and it is hard to predict which ones will go which way and I've found that to be true.
Fingers crossed that the support you receive outweighs the burden of this disease process.
Peggy -
Jensen,
I too am triple negative and am struggling with new decisions I have to make that "might" reduce the chances of recurrence.
It absolutely feels scary to be in a subtype of BC that they only started studying in earnest about 8-10 years ago. My post op path report wasn't glowing but it wasn't as bad as it might have been. Hence, new decisions need to be made re next steps (I.e., rads).
I keep one member of my treatment team who is distant emotionally (my MO) because I know he keeps abreast of all the new research, clinical trials, etc. I almost ditched him at first because of his bedside manner. He's warmed up a bit, especially after I totally broke down emotionally and physically in his office after AC 4. But mainly I want to be in the know and I plan to pester him about triple negative news once this first active treatment phase ends.
Fingers crossed that your surgery goes well and that the path report will be reassuring to you.
Peggy -
Good luck today jenjenl. Holding you close in my thoughts and sending you best wishes for a quick and straightforward recovery from your surgery.
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JenJen,
How are you doing today?
Peggy -
Thanks for asking! I am back home and recovering. I had some breathing issues due to all the CO2 stuck in my chest. There is nothing better than your own bed, shower and real food! The Doc just called and the pathology report only showed a B9 tumor in one of the tubes so YAY I'm feeling great now. The hardest part is getting up from resting - I feel like a turtle stuck on my back rolling from side to side. My DD, who is 5, said she would make us dinner tonight....PB&J's - sounds fantastic to me!
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Jenjen, so glad you are home and resting. And that the tumor was benign! Enjoy your PB& J.
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JenJenl ~ congrats on the good path report from your hysterectomy. Rest well and enjoy the PBJ's! Sounds like you are raising an amazing daughter!
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That's great news Jen! Wishing you an easy recovery.
No food or water in the morning due to port removal surgery tomorrow. Looking so forward to having this physical symbol of treatment gone!
Been exercising this week and feeling stronger. Day by day! -
Jen Jen - so happy for you ! Your daughter sounds so sweet and caring - you are blessed !
Glad to hear about the successful surgery and path report too - u are on your way to a food recovery !
Gwen - glad to hear u will have your port removal and happy u are feeling stronger . It sure takes a while for those muscles to recover from that TC cocktail !
I am almost through my 4th week of rads _ piece of cake ! -
Congratulations Jenjenl!
FriendGwen- Good luck tomorrow! It was such a relief to have my port removed...one more step in putting C behind me.
BTW...the recovery from having it removed was way easier/faster than when it was implanted.
Hoping everyone is on to better days!
Kathy -
FriendGwen ~ Good luck with the port removal! I can only imagine how good that will feel! Happy to hear you are exercising and feeling stronger. I am now 3 weeks PFC and the motivation to exercise is getting better so feeling stronger can't be far behind!
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FriendGwen - good luck today. I felt the same way when I got mine removed...a step to putting cancer treatment behind me.
Last night I totally caved in the food department - cheese and then a twix bar. I love my cheese and chocolate.
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Best wishes to you today Gwen on your deportment. I am so jealous of you HER2- Negative girls that get to have your ports removed already. I will have mine in until at least December.
We are heading to the hospital in a few hours for my ALND surgery. One step closer on this long road
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