Why was I stronger DURING treatment than I am now?
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Hi, haven't posted for a while, but I do lurk.
The two year anniversary dates have been hitting me, even more than the one year ones. Maybe because I'm amazed that I still have so many stiff, achey side effects and while life is good- I hurt. I didn't expect that I would be, 1yr 9 mos after chemo ended. this morning I woke up, hands hurting, hips hurting, one shoulder and arm hurting, as they have been for over a year, dreading getting out of bed, even though the night in bed is what makes it worse. I was just pissed off and disgusted. Is it the Tamoxifen (after I went through all AIs with similar and maybe more SEs)? Is it just garden variety arthritis, do I need Xrays? My MO is not very interested either. I am seeing another GP in May, a cancer survivor herself who is interested in patients post-treatment. This may help. I know it's better than dying of cancer. Plus my sister's friend just had treatment for the 3rd time for ovarian, and when they did surgery after chemo they saw she had many tumors and was riddled with more cancer. She is contemplating what to do (they suggest more chemo and radiation.) She is 53. So that is reminding me how insidious this cancer bugger can be.Sorry to be a downer today. Yesterday I bought some fresh new spring clothes and had fun. Thanks to you all.
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Lily, the way you were treated is horrendous. My oncologist sat down with me and showed me the math about my risk, how each treatment was lowering the risk, and exactly what benefit (statistically speaking) I would get from chemo. And my radiation techs were always pleasant; getting rads is a very intimate experience, lying there with my boobs out while these young people draw on me with sharpies or push and pull me into position...they made a potentially traumatic experience into just another routine. Whatever hospital you went to needs to embark on a program to train their personnel to treat patients humanely. This process is difficult enough without having to deal with mean people. My radiation oncologist jokingly called me a "troublemaker" at one point for complaining about side effects (my skin was falling off from a moist reaction), and even though she was just joking I went back to my car and cried. They need to realize that we are all scared, tired, and overly emotional going through this!
Tim, I had TC and I only threw up once. I didn't have a port. The chemo itself was not as bad as I feared. The fatigue was (and still is) the worst of it. Good luck with your treatments.
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Same story with me. You are not alone.
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Oh boy can I relate.
Many women experience a form of PTSD after/during BC. I am one of those lucky women. My therapist says its like our brains can't handle that much stuff all at once when we are diagnosed or in treatment. After we slow down, then the processing happens.
I also have been told that Hormones play a huge roll in the mood swings. Are you taking any AI's?
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Alive4Five, I lurk more then I write these days as my life is pretty much back to normal. No new normal, just normal. My hair is back, my breasts look okay and time marches on. I am coming up to 3 years from surgery, chemo and rads. The big difference would be if you read my posts from the beginning of this thread, you will find that I was once hiding in my closet so my husband could get the kids off to school without them seeing what was happening to their mom. My sleep was a mess, my mind was a mess and I was doing anything I could to not hurt myself. The depression was so dark that I just counted the days until it lifted. The big thing was I KNEW it would lift. It was just a matter of time. It didn't make things any easier, but I had a sliver of hope.
As for the drive and energy... you just have to give yourself the okay to take it easy. I know it is easier said then done. I still try to be careful to rest when I need to so my body/mind don't attack me. Crying is good. It is our bodies way to release tension. Heck, I was sitting on the couch the other day after a very busy week and tears started to roll down my face. I recalling thinking WTF?? I just let it happen and it happened again about 10 minutes later and then that was it. No big deal.
Come for support here or perhaps see a counselor, either one will help.
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I just had my first infusion and honestly I feel no different! What a relief! I know days 2,3 and 4 will be worse but just having begun treatment is big step.
Thanks for reassuring me about it. I usually go to worst case scenerio...that's just me.
And when things are not as bad as I anticipate (which is often) I go into a strong relief mode!
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I just read that within 5 years of a bereavement breast cancer increases 12 times! Both my parents died five-6 years before i got the cancer.
When I was at MD anderson the onco told us that stress is a big factor in bringing on cancer.My husband nearly fell out of his chair. He KNOWS he has been a major stressor in my life.
Now my goal is remove as much stress and handle it better. HA! Just hope life cooperates!
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Rock, so great to hear that you are doing well. You and I were treated around the same time and I KNOW that I not been hit by this uterine cancer I'd be back too.
We have to be patient with ourselves.
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Lily, I so remember when you were dx'd, cos we were about the same time. The brutality of your treatment, the inhumanity of your experience is just so awful. It makes me too sad to think of you being so dragged around physically and emotionally.
We all learn somehow to put ourselves back together following the bc experience. I still don't know if I am weaker, stronger, normal or new normal, a warrior or just a 53 year old woman who has?/had breast cancer. How can I know so little about myself? when I have been turned inside out, burnt, cut and poisoned. I am very thankful for my lovely surgeon Ms W and my anti-depressants (industrial dose)
And of course all my friends here.
Having a little cry now
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((((winter))))
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Rockym, so wonderful to hear that you are doing well. It gives me hope! Someone said to me once that you have to think of you recovery not in terms of weeks or months, but seasons. Giving myself permission to rest is tough...even when I'm too exhausted to do anything, I still feel like I should be stoic and keep going. I think of all the women who have been through this while raising children...my hat's off to them, I don't know how they do it!
Tim, I got my TC infusions on Friday afternoons, and would feel OK (except for some minor mouth sores and rumbling gut) through the weekend and even into Monday. About mid-day Monday the fatigue would hit, and be worse on Tuesday and Wednesday, and start to clear around mid-day Thursday. I remember one day just lying on the sofa for about 10 hours, watching the autumn leaves fall. I didn't even have the energy to watch a video. Yet, it was not unpleasant. Crossing my fingers you don't have any bad side effects.
The 6 months prior to DX were the mostly stressful of my life, watching my mother decline and die. I was still in mourning when I was diagnosed. So yeah, I definitely concur with the stress/bereavement connection.
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hi all
I haven't been on commenting for a few weeks. I feel I really need everyone's experience here.
I am approaching the two year mark of my diagnosis and starting about a month ago I have just been a wreck and it keeps getting worse. This past January which was a year from my ending chemo I "turned a corner" and felt like my mind was returning, I could work the depression was lifting and I was getting physically stronger.
I went to LA to see my grandson for 10 days and ever since I came back I have been a wreck. It started with depression and anxiety and it has steadily gotten worse. Some days I just cantforce myself out of bed. I get so anxious and fatigued. I have a thyroid auto immune disease and I am hoping this is all related to that and they can treat it with meds. But I also have a real fear that I have cancer again, even though I have no breast so not sure where it would be.
I feel I should confess this to all of you. It scares me that I was doing so well and now feel such a mess again. I was really hoping it would steadily improve once I turned the corner in January. The depression and anxiety I am having now is actually the worst I have had I think over the past two years.
My husband is bring very helpful, he wants me to see an auto immune specialist because he thinks this may be more related to that than cancer and treatment.
Would love to hear what some of you have to say.
Take care,
Julie
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So sorry to hear this Julie. It makes sense that it could be something physical but I'm wondering if parting from your grandson may have triggered this. I find my grandchildren are the best anti-depressant there is!
I don't think this recovery thing is a smooth ride. So many things influence it.
Last night was bad for me, neuropathy in my feet was keeping me awake. Then I remembered a new script they gave me for Ativan. I had never taken it before but it knocked me right out and I woke up feeling so much better. Better living through chemicals! I hate taking pills but I've succumbed to the need.
I'm wondering if you are excercizing? It's nature's anti-depressant, along with grandchildren.
It seems to fix everything, all at once, physical and mental.
Please keep us posted about your progress. But as a shrink once told me "Your life is full of crap, this is life, it's not you." And that was before my most recent diagnosis of uterine cancer!
In a way the cancer gives me something to fight and worry over. When everything is smooth sailing, other problems jump to the forefront and cause problems.
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JulieHo -
Good morning. It pains me to hear that your depression is worse than ever - because I'm so familiar with that awful feeling. My feeling is that no matter how many corners we turn, there's still the possibility that not all turn are good ones, and you've turned another corner and this times it's bad. But when you're walking through hell ...keep walking. There'll be more corners on your route and they'll be so much better than this one. Easier said than done - I know - but what I'm trying to say is not to look at this current depression as the end of the road, but as part of the process. I think it's natural for our brains to go back to cancer when we're not feeling great. Stress and fatigue and depression lower our immunity to everything, including mental strength, so we naturally go the most negative, most scary place. I haven't experienced a return to depression with a vengeance such as yours - so I can only imagine how frightening/discouraging/exhausting it must be.
I think your husband might have a point about it being related to your thyroid. I know nothing about thyroid auto immune diseases, but I know that the thyroid controls hormone sensitivity and disperses energy, so that sounds like a likely link. As far as it being cancer - put those thoughts out of your head (been there, done that!)
I wish I could offer you an escape route out of the place you're in - but it's so difficult. I 've been following your posts since you joined this thread so I can say that I have faith in you, and I will be checking in with your progress, or thoughts. We're always here to listen.
Janet
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Hello all, I also have not posted in a couple of weeks, but enjoy reading everyone posts, & you all were so nice and supportive a few months back when I was really needing an ear.
Julie, I believe your roller coaster just took a dip but will be headed back up soon. I think of all this as a scary ass ride. I'm good for 2-3 days and then panic sets in. Last night I reading someone posts about lung mets, I froze, that could be me, anytime.
The oncology nurse was the only one that was really willing to talk about the future. She said plain & clear....yours is "uncertain". I wanted to jump up & hug her. She was being honest...The rest just grumble, "don't worry about it". That makes me crazy...
Today on my walk, feeling great and then it feels like my hip is going out...slow down....5 minutes later, all is good...Is it the Arimidex, or my age ( 59, soon ) or the beast?
Tim, you have been a rock not to have taken Ativan before.. I got a prescription in Feb. when I hit rock bottom. I do not need them now, very seldom. They did help so much when I was in that emotional turmoil. I would probably take them more often but I know that they will not refill them. Drs. Do not want that drug to be long term...which I understand. Makes me crazy though when someone is really struggling with depression or pain and cannot get meds... Like we want to be in this place....
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Julieho: The time leading up to and including diagnosis is very tender. Your body remembers. The season, the weather, smells, dates, etc. Your heart may feel more vulnerable, I believe, during this time as well. Seeing your grandbaby perhaps reminded you of how fragile life is and how amazing our capacity to love is. Please allow yourself to simply feel these feelings, reach out to us anytime now or down the road. As other wonderful ladies have mentioned, it goes up and down as we heal and make sense of our new lives. I think breast cancer forever changes us. Be gentle and patient with yourself and know we are here for you. Side note: I'm reading Broken Open by Elizabeth Lesser. So far, I really find many passages comforting and validating to how I've been feeling. (((hug)))
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Thank you so much Janet, Tim, Holeinone and Purl for your incredibly supportive post.
I am going to see my doctor tomorrow to see if this could on part be due to my thyroid disease, Hosimotos. Many of the symptoms such as depression, anxiety, confusion and difficulty concentrating can all also be attributed to that so I want to be sure this isn't at least in part physiological.
I so agree Purl that I also think there are many triggers going on right now that remind me of where my life was two years ago and the sharp turn it took. My Mom also had her second cancer diagnosis at 55 and her first at 53 which is when I had my first and I am now 55. It is hard for me to not be scared I am following in her foot steps. But then I see what Tim is doing and how amazingly strong, real and honest she is going through treatment again and I am reminded that I don't need to live in any day but the one I have, and if this one is hard this too shall pass.
I am do fortunate to have all of you and wanted to let you know how safe and accepted I feel here. Thank you do much.
Julieho
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Thanks for the kind words but really, we all have the strength to get through what we must. I think of myself as a quivering mass of jelly much of the time, not the tower of strength some think I am.
It's odd, before this latest diagnosis I wanted to die. I saw no hope for my future. Be careful what you wish for! Suddenly, I'm fighting to live! I think much of it is because of my husband. He took away my desire to live and gave it back to me with his unending kindness. It's amazing what has fallen away.
But of course I'm not counting on it being this way forever.
All we have is today. Doesn't matter who we are or what we're coping with. Just today.
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Purl - 'Your heart may be more fragile'. I love that line, it's so true.
Tim - I'm a quivering bowl of jello quite often. I'm also a people pleaser (A bad habit that I'm trying to shake) so I do things so others won't worry. Because of that, my friends say that I 'sailed through cancer'. Ha! Choppy seas, for sure.
I once read a bumper sticker that said 'Speak Your Truth. Even if Your Voice Shakes'. That always stuck with me. Opened my eyes that nothing is easy, and everybody has something to overcome. I used to think that for people who got to the heart of the matter - the challenge was easy. Not true. We're all trying to find courage to keep moving.
Julieho - I hope today is a good one. If it's not, then tomorrow. It will come.
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Hi all,
Depression is weird, I have been waking up feeling sick like I did after chemo....not all the physical stuff but the exhaustion, inability to motivate, make decisions, achy, anxious and so tired.
It is a sneaky thing that seems to have creeped up on me while I was out feeling better in the world just a few short months ago. Sort of like the cancer diagnosis that came out of the blue following a winter and spring of great energy and involvement in my work.
I am so hoping this is related to my thyroid and something as simple as thyroid medication will straighten it out.
In the meantime I stay in bed surrounded by my dogs and just wishing all this would go away.
I hear you Tim, be careful what you wish for I don't want to die but I really don't wNt to live like this either.
Hope to write soon that things are better.
Thanks everyone for the support.
Julie
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Julie, I also have an auto-immune disease (pernicious anemia) which was diagnosed 5 months after chemo ended, and also causes fatigue and brain fog. On any given day I don't know why I'm tired...if I've just had a B12 shot I figure it's PCRF (persistent cancer-related fatigue), if I haven't had one in a while I figure it's PA. And the oncologists seem surprised that I am still fatigued (How do they not know the statistics????), and just want to prescribe anti-depressants. Except I'm not depressed, and when I was on anti-depressants they didn't do squat. My mood is just fine if I'm not trying to drag myself through the thick
mud of fog in order to try and get something, anything, done. And my mind also peeks into the "maybe I still have cancer somewhere" closet now and then.0 -
and now some more "fun" news. I just got the results of my Aunt's DNA screening for the gene mutation they found I have. It is called an NBN mutation and it is linked to increase risk of cancers, breast, colon, ovarian and I think prostate. My Mom died and did not bank any DNA but before my Aunt did (her sister), she had banked DNA. So they now have confirmed that I inherited this mutation from my mother. Given that my mom, her two sisters, and three maternal cousins and now myself have all had breast and colon cancers, I wasn't entirely surprised to have it confirmed to be from my Mom's side.
I just feel so sad that there is any genetic link to this disease because I have five children, thankfully two are adopted and don't have to worry about my gene pool, but my daughter and two sons do. I so hate to think they could have inherited a mutation from me. They will have to be screened because they have a 50/50 chance of having gotten it. The same with my brother and sister, who so far are cancer free.
Anyway, this just bummed me out a bit more. Ugh - so want this fatigue and depression to end and find my way back to my life. It was good this winter, I keep reminding myself of that but that only makes me feel worse in a way. Like I am just doing this to myself.
Sorry to be such a bummer right now. And yes CFDR - anytime I feel down I always have the "maybe I still have cancer" thing creep in…I wonder when or if ever that will end.
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Julieho - that is tough. When will your kids be tested? Fingers crossed that they all got the "good draw". Do you find it a little bit emotionally easier to have something to "blame it on"? Like, I got cancer because of a bad gene, not because of something I did or didn't do. I think we all try not to go there, but I'm sure every one of us has had the thought. Why me? Was it somehow my fault? You know...
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Jennie - Actually I do get what you mean in that I have something to "blame it on" but, the fear that this is something my children may have to face now too just totally freaks me out.
I always knew based on the high rate of cancers on my Mom's side, my mother and both her sisters had breast, both breast and then two of them also had lung and my Mom had sarcoma and bladder in addition to two separate breast cancers in each breast and lung cancer. Then I had a maternal cousin who died of breast cancer at 27 and two other maternal cousins who had colon cancer in their 50's, one died and the other so far has survived. So that is a lot of cancer in the last two generations on my Mom's side. When I was screened for the BRCA gene mutation and it came back negative (this was just six months before I was diagnosed with cancer) the genetic counselor told me, given my family history not having that specific mutation didn't mean I wouldn't get cancer. And, I guess she was right, four months later I was diagnosed.
So, even though it is not a surprise to hear my Aunt had the mutation it just makes me so sad, I hate to even have to suggest my kids be tested. I know my daughter doesn't want to do that. She is 32 and just had her first child and even though my oncologist (before we found out I even had this mutation) thought she should have a baseline breast MRI done now - she was told that she didn't have to start breast screening until she was 40 by her doctor in LA.
I totally get not wanting to know and live in fear of it, but I also know that my take on it was I saw that early detection helped my mother survive 4 different cancers (all separate and unique cancers) until she finally was diagnosed with sarcoma, and that was actually the only cancer lump she found that she chose not to immediately see a doctor about, because she was headed on a trip and by the time she returned it had quadrulped in size. I don't know if the sarcoma would have been treatable either way, but she lived 15 years with many cancers and I think mostly because of early detection and treatment. So I did this gene mutation screening hoping that having some knowledge would encourage all of the family to screen themselves, etc.
Ugh - I am so done with this disease and so want my life before cancer back, but, that is not happening and I need to practice acceptance again and find my inner warrior again.
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That is really a punch in the gut and I'm so sorry!
I have to be tested for Lynch syndrome. Is that what you have?
There hasn't been too much cancer in my family but since I've got 2 different kinds they want to make sure. But I so know how you feel. I was just thinking, when should my daughters be tested? The very thought of it makes me sick. I don't even know how to approach them, or my son for that matter.
We all have some rotten genes. We just found out that my husband's uncle has parkinsons and that's hereditary too. We knew about his inheritance of heart disease.
What can we do?
(((Julie))) you'll get through this and when you are on the other side you'll hardly remember...one advantage of chemo brain!
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I have been having a pretty rough time lately. I was thinking about it yesterday, and for one thing, tamoxifen can mess with our emotions, but I was thinking that probably the biggest reason is that it's just finally sinking in that many of these changes are permanent. All through treatment we keep going by saying "this too shall pass" and all the docs are quick to say things like "give it time, you will get back to normal" etc. and for awhile you believe it. But then as time goes on we realize that is not the case. The pain is not going away. The muscle they took is never going to grow back. The nerves they cut will never regenerate. I can never again use my left arm for many things, for fear of triggering lymphedema. My hair is growing back, but it's different, it will never be the same as it was. All these things remind me every day of what cancer treatment took from me. And everyone around me expects me to just put it behind me and carry on like nothing happened. But that's impossible. So, somehow we have to come to terms with the new us, that maybe we don't like very much, and that is very difficult.
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Why won't nerves regenerate? Why never?
The body does amazing things.
And the mind does amazing things in that it gets used to a lot.
I still have some numbness under my arm. So what? I don't even notice it 2 years down the line.
I don't mean to be unsympathetic but I've found that when I've thought "never" I've usually been wrong!
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quite a lot of my nerves have regenerated too, not all but many, took two years though
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Jennie: I couldn’t agree with you more. For many of us, it is our reality to accept that some changes ARE permanent. I know
TIM didn’t mean to be unsympathetic. My left underarm has no feeling and is tight and that will not change. When I dress, undress, shave, reach for something, it’s a reminder. Like you, I think hard before some activities and day to day tasks in order to avoid lymphedema. It’s been 2.5 years since my bald days and I don’t even bother looking in the mirror when I brush my
hair. It started curly then went limp and I have not grown to like it. My skin itches/rashes, I have leg cramps, the pain in my right thigh flares up mostly at night. All these things may improve, but according to physicians I have spoken to recently, maybe they won’t.No, I am not in a wheelchair, I am alive. This thread is a place we can share our sadness and frustrations (and at times our joy) with this post treatment period. We are the warriors who got through treatment and now bravely and honestly share how hard is can be at times to move forward some days. Cancer SUCKS.
We are hopeful, positive, loving women and I am so grateful to have found you all.
I agree, during treatment, a lot of doctors expressed, “oh,that will pass”. Sometimes it does and sometimes it doesn’t. Things don’t always “regenerate”. I try to keep the hope, try to be grateful, but I also, most importantly, I give myself the permission to grieve. There has been loss. Yes, insights and lessons learned, but loss should be felt and honored.
((((love)))))
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purl so true i have nerves regenerated but the tightness and rigidity remains.....
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