3.5 months out from dx and can't stop crying
I'm trying to cut myself some slack, since stage IIIc is no joke. But most days I don't see how I can possibly beat it. I know people do. But at grade 1 and strongly hormone positive and weakly HER positive, I feel like as the years go by my risk will actually go up. I can't see how I'll be any more relaxed at ten or 20 years out (God willing I get that far) than five years out. (Google low grade and late recurrence). So many nodes with extranodal extension and blood vessel involvement, a tumor they couldn't quite size (was it one continguous tumor or two tumors -- am I T2 or T3?) Low grade that the onc says wouldn't show up on a PET scan even if I do have small mets already so - no PET scan. (All other scans clean.) I'll truly never be out of the woods for the rest of my life. And probably never off pills of some sort.
Taxol is proving to be as nearly uncomfortable as A+C which is really disappointing. Different - but lots of pains shooting through my body and nonstop headache and earache and G.I. aches after my first dose which was Friday. And I'm still struggling with a bit of nausea which I wasn't expecting. Today is the worst day symptom-wise so far. I have three more DD treatments of Taxol. Then on to the rads which I fear maybe most of all. So afraid of the horror stories of being burned. (I'm super fair.)
And then there's Zometa. My onc is okay giving it to me but I have had so much jaw surgery, tooth extractions, braces for ten years, and gum surgeries that I am afraid to take it. So one arrow in my arsenal may have to go unused.
I'm fortunate in that I have a comfortable home and a loving partner who is taking great care of me. And I'm not working right now. So I have the luxury of lying on the sofa crying all day. I don't know why but I cannot stop crying. I cry every day. I take 3 Ativan a day, down from 4. Maybe there's a bit of Ativan withdrawal. Maybe it's the season. Maybe it's normal. Is it?
Why oh why are we not further along in cancer treatment? What is taking so long? How can it be that treatments today are more or less exactly the same as 20 years ago, except for Herceptin? Does anyone believe the conspiracy stories about the cancer industrial complex not really wanting to find a cure? I can't bear the thought that there might be a tiny bit of truth to that. All my donations from now on are going to the National Breast Cancer Coalition which has set a goal of eradicating breast cancer by 2020. They are deadly serious. They think it's doable and I pray they are right. Susan Love is involved with them.
Best wishes to all of you and a big thank you to all you long-timers who continue to post your inspiring stories. You can't know how much it means to us newbies.
I'm in awe of how positive so many of you are. I am in a mode of fear and self-pity that I cannot break out of. I'll probably delete this post. I'm really just venting in a not very coherent way. Just feeling bad today.
Comments
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Days 3 and 4 post taxol were emotionally crippling for me. It was steroid withdrawal from IV steroids given before infusion. I didn't know that could happen until I mentioned it to the infusion nurse who told me it was steroid withdrawal and totally normal. I thought I had gone from tough girl to emotional needy basket case overnight.
I called closest friends and told them what days I needed the most support via phone. That helped me get through it.
TS -
So sorry you're hurting today. I think we all have had these days and it will pass. Please don't delete your post. There are many women here who will share their wisdom and offer you support.
I think you are probably in the phase where the reality of your situation sinks in. At first there is the shock of dx, then busily making plans for surgery and treatment and then weathering the initial chemo. At some point, as we learn more about cancer and the prognosis for our particular situation it can become overwhelming and quite frightening. Some women have gained control by changing their exercise habits and diet. I'm on zometa knowing that I am at high risk for jaw necrosis due to all the factors you mentioned. I grasping for any sort of advantage over this disease and have put myself on meformin.
I'm sorry the Taxol is hard on your body as well. I have heard some say that se's are sign that the chemo is working.
If you are on steroids during chemo they will wreak havoc with your emotions. Please know this is temporary. I begged my onc to lower my dose and she did. I feel it is careless for the oncs not to warn of the very real emotional chaos steroids may cause. They can contribute to feeling hopeless and take you to a very dark place.
I don't have anything to contribute about radiaion and fair skin, but I'm hoping someone has good advice for you. Hugs.
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Yes, Please do not delete your post!,You are helping so many others now to feel "normal", and for those of us that are further down the road than you, it helps us to remember the dark times, and to appreciate where we are now, and how far we have come. You too will look back on this post someday and see how strong you truly were considering all that you are going through, and how much stronger you have become as a result. You can then use this experience someday to empathise and encourage those who unfortunately will find themselves traveling the same path you are now, and to give them hope and light during their darkest times. We all need to support each other until the day we are all waiting for, which is the day no woman should have to deal with breast cancer and the devastation that it can bring to our bodies and spirits. Thank you for helping me to remember, to be grateful, and to remind myself that it is my turn to offer support to others, like so many did for me.
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Oh my gosh,
Don't delete this post. I for one have been there off and on since my dx and don't know what I would have done w/out these ladies. That's what we are here for. We "get it".
You are in the middle of the war right now, but it WILL come to an end and you WILL go on and you WILL feel better. Bit by bit, it truly does get better. Sure we all worry at times, but remember you are not a statistic, and the first thing you should probably stop doing is Googling everything. The Web is great, but it also can give you way too much information and stuff that may not even apply to you.
They are throwing the big guns at you, I got the same tx. 4 DD A/C then 4 DD Taxol, then 6 weeks 5/week radiation. I was fortunate. I had no problems until the very last week with just minor burns. They have creams to preempt that, so hopefully they will find what works for you. I found rads SO much easier than chemo I actually went back to work. I had some weird gastro issues with Taxol for about 2 or 3 days following tx which my onc said is not considered a side effect from Taxol. WTF? Hmmm, what the hell else could it have been? So I believe you are having a similar SE. All those will go away once you are done with chemo.
YOU CAN DO THIS! Don't be hard on yourself for crying. Sometimes I wish I could cry more easily. I think I keep it in too much, and well, you know that can't be good.......
Keep us posted!
Love,
SharonOh, btw, be sure to see the post here from Bugs----6 years out at Stage III!!!!
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I was were you are about a month ago. just couldn't stop crying. just let it out.
breathe
your not a statistic. don't look at those things anymore.
we can do this. don't let C rob of the life we have left. who knows when its someone's time. imagine that taxol ...its in your body destroying those bad cancer cells. close your eyes and imagine it killing them. do you have al ittle voice that says you can't do it? if you do then tell her to shut up.
theres a little voice in there that says you can do it. start listening to her.
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posy
please don't delete the post-- a month from now you will feel so much stronger-- you are still IN THE MIDDLE OF THIS..... that is very different than being on the other side. We all completely understand.... I promise that this will look differently once you no longer have to do chemo. And radiaion, well I am very fair and I was very worried... and guess what-- practically nothing-- I used the creams day and night from the first day- and I had sensitive skin, but not the burning... the techs told me that it does not matter if you have fair skin--they can never predict how each of us will react. So try not to worry about something that very well might not happen.
You will have to be vigilant, but that is not a bad thing.... and yes, there are meds-- maybe you will stay on them, maybe you won't. You can decide that when the time comes.
One of the greatest lesson I learned during this experience was to take things one at a time. I tend to look too far forward and project and get upset.... ironically, it was breast cancer that taught me NOT to do that. I would go to chemo, go to work, go home, go to bed... repeat.... then go to radiation, go to work, go home, go to bed. My world shrunk down so much I could not believe it.
Now, almsot 3.5 years out from dx, my life is the same chaotic, joyful, stressful, loud and noisy place it was when I was dx..... it is true, I do sometimes think of bc, but really not the way I did when I was in the middle of it, as you are right now.
Be kind to yourself--you feel what you feel and that is legitimate. I just want you to know that you won't always feel this way.....
hugs
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You sound just about right for a "3.5 month-er" and rightly so, you are going through soooo much right now, mentally and physically. If you were all smiles and positive Patty I'd be seriously worried. I was right where you are....I was a Googling basket-case. It won't happen over night, it takes a long time to move-on and you never will completely. That fear is always there but you do put your guard down with time and there will be days BC won't cross your mind. Listen to me, I sound like a veteran... but I will be 2 yrs out in July and I am starting to feel the best I have since dx. Other than some aches from the AI's I'm doing ok....been painting, building a deck and other projects. I'm telling you this just hoping you see it will come. There is no way will all your going through you should expect much more. Don't put that kind of pressure on yourself, you get through tx one day at a time, Ativan or not and you get well cause life is coming for you. I do hope you feel better soon and stay off Google...visit here instead, we're always here. Sending you big hugs.
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Hello from a fellow stage IIIc'er. It a lousy place to be, isn't it? I've spent a lot of time researching and googling. Sometimes I'd find some pretty ungly stuff. If you google pleomorphic and stage 3 you'll see what I mean. But, after 2 and a half years I'm still here. And I really believe that I have many more ahead in my life.
Go ahead and cry. There is absolutely nothing wrong with that. We do what we have to do. For some of us, that means looking in the void and see nothing but negative. But when we pull back, we see all the wonderful things in our life and we find the courage to go on. You're in the middle of chemo and you've been let down because you thought things would get better with Taxol. I can understand that because I heard that was the "easy" one. Well it wasn't easy for me. I had neuropathy, terrible "fogs", everything tasted terrible (that when you realize how many food commercial are on tv!), rash, hoarse voice and had two transfusion. I actually did Taxol first and then AC. AC was better just because my taste improved but I still had to have 5 more transfusions.
Chemo is rough. My goal was to get through the week. But when it got really bad my goal was to get through the day. I did it. So can you! It will get better. But unfortunately, it requires time.
I also wanted to respond to your comments about cancer treatments. We are much, much further than 20 years ago. We're further than we were back in '99 when my sister was dx'ed. The supportive drugs are greatly improved and allow more women to continue with chemo. In the past, they would have to stop because of nausea or low counts. A friend of mine had luekemia 20 years ago. She had to be hospitalized the entire time she was going through chemo (6 months!). Now we have AIs for estrogen positive. For those of us with BRCA2+ they have Parp Inhibitors. I have a list from someone who used to post -- I'll try to find it and add it to this post.
Don't believe the conspiracy people! Their simplistic view really burns me. Breast cancer affects many, many people. Including (or the families of) pharmaceutical execs, researchers, oncologist, etc. But cancer is a mutation of a cell, the very basic form of life, not easily separated from the good cells. If you would like to understand the struggle of finding a cure for cancer I would recommend "The Emperor of all Maladies: a history of cancer". I found it very interesting.
Keep on, Posy! You're getting close to the end of treatment. Right now, time is your friend.
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I am so sorry that you are going through this. Big hugs to you. I had DD ACT last year. It will go by faster than you think. The rads were a little harder on me but not that bad.....you can do it! The stage is not a number or a death sentence. I sat next to a woman during chemo that was diagnosed at stage 4 and that was nine years ago! Stay positive...it is tough but we can all try together.
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Posy,
I'm so sorry you're in that place. Sucks, doesn't it? Taxol was different than I ever imagined. But the horrible time of chemo does pass. Cut yourself lots and lots of slack. You'll get through.
I don't believe the conspiracy theories. I think there's a big, obvious reason not to believe them. The pharmaceutical companies want to make money. Their ideal drug would be one that keeps the patient alive a long, long time, not one that allows the patient to die quickly. Think Gleevec. So I don't expect them to come up with a "cure" for me, but I have not given up hope there will be things that keep me going much longer. At this point, taking a pill every day feels so minor compared to what I've been through.
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Thank you, everyone. I really mean it. Thank you.
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I was in that place sat. Just couldn't stop. Spent friday in car driving to see RO. And my birthday was Sunday. Had a little pity party all by myself oninto sat. Feel better now. Had some retail therapy with my 15year old.and out to lunch and dinner
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My worst times where 2-3 months out from treatment. Depressed, wondering why..ugh. It gets better, I promise! If it continues, don't be afraid to ask for something to help you get through this phase. {{hugs}}
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Lady, You feel free to cry and scream all you want and when you want. The emotions are real and more intense after certain drugs and you have every right. Don't feel bad about your emotions. It is your life on the line. Good luck. P.S. I just cried with you.
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Thank you, Sherri, and everyone. I am feeling better this week. I've cut Ativan down to one or two pills a day and the Taxol SEs have subsided somewhat. Nervous about second infusion this Friday.
Still scared stiff and thinking about cancer every waking moment but... what else can you do?
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Hi, Glad that you are feeling better this week. Things really do get better. I find that I do not think about cancer all the time now. Wishing you the best for your next infusion. SharonH
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Hi Posy1. Thanks for keeping your post up. it's really helping me cope today as well as all of the supportive comments. I am about 2 months into this from my DX. Going to MO today to get blood test, Brach test, and Oncotype results. I was told on the phone yesterday My Onco score is 27which is high mid range for oncotype. I am bracing myself for the MO and what treatment she will prescribe. I am trying very hard to remain positive for my family. I have a 6 year old little girl and right now all I want in life is to see her grow up.
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