Why was I stronger DURING treatment than I am now?
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Hakuna Matada - it is a wonderful thing. Thanks for sharing…
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Robin - Hakuna Matata translates to 'no trouble'. The equivalent of 'don't worry be happy'. It's a Swahili phrase, and I only know this because I just looked it up. After reading your post I was curious too.
Robin, it sounds like you have a really great family
My favorite Christmas was last year when we all went to Cuba. There were no gifts, no decisions, no shopping, no stress - it was fabulous. I like Christmas, but I find it all overwhelming. I used to be such a great multi-tasker, but now I think about social obligations and what I have to make/buy/bring and i just want to have a nap.
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Well, being unemployed solves a lot of the Christmas stress although it's replaced with an even bigger STRESS. DH was laid off a week ago. I like giving gifts, hate the thinking of them and shopping for them. Thank goodness our kids are grown and understand. I just want to be moving on from all this post-cancer, post-lymphedema, post loss-of-vision-in-one-eye, unemployed stage.....I was strong during surgeries, treatments, pneumonia, etc. It's all too much now. Therapy and merry Christmas!
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OUCH, Jeannie. Why do so many companies lay people off right before Christmas? Sheesh.
As you say, a plot twist.
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Love to you all!0 -
This is slightly off topic, but I'm sure many of us have wrestled with the dream of doing what we really love before it's too late. This is a funny...at least it's *supposed* to be funny...look at going after your dreams.
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Cdfr - that is really true when you think about it. I know it is tongue-in-cheek but so very true.
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HHCATS -Thanks for the chuckle!
I needed that!
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This is sort of off topic too - but what the hell. My husband just forwarded me a story about a NICU (Neonatal Intensive Care Unit - if you have the great fortune to not know what that is) in Toronto. He sent it to me with the message that "we were luckier than some (because we took two babies home)". Some background - my identical girls (now 6) are NICU graduates - they spent 89 days in the NICU after being born 3 months early at 27 weeks. We are so blessed that they made it. One weighed 2lbs 3oz and her younger sister weighed 1 lb 13oz. We went through a version of hell in those days - never knowing what "news" we would get when the phone rang or when we visited them in the hospital. We had scare after scare but they made it. They were fighters from Day 1 when they came off their ventilators to the surprise of everyone. Every once in a while I look at them and remember how far they've come. They are strong, healthy, wicked smart little girls. They are likely turning their older brother into a life-long bachelor but he adores them and is so proud of his "twin sisters".
I said this earlier this year and I'll say it again. Chemo and cancer treatment were a snap in comparison to those NICU days. I never felt so helpless as I did in the NICU - and we all talk about pasting the smile on your face during treatment - in the NICU you had to look like you had it together or they "sicced" a social worker on you and your family. I remember "collecting" myself outside the NICU doors and then losing it on the way home in the van.
I asked my husband why would God save my girls only to possibly take me away from them before they've grown up and his reply was this - they found your cancer early as a total fluke. There was no reason why I went to the private healthcare clinic when I did and got a mammogram. I was told by my MO that my cancer was likely in me mere months when it was found. Triple negative moves fast - had I gone even one month earlier - it might have not been seen. In fact, they never saw it on my mammogram and sent me for a baseline breast ultrasound because I had dense breasts. Someone made that decision with a supposedly "clean" mammogram in his hands. I don't even want to think about what would have happened had I not gone to the clinic when I did.
Whenever I get worried and upset about it coming back - my husband always just tells me "there is a plan".
There was a plan for my girls and there is a plan for me.
There is a plan for each of us on this thread.
I never thought I would go a day without thinking and reliving our time in the NICU. But I have. Everyone has told me that cancer will eventually fade to the background, too. Little by little it is happening.
Thank you to everyone on this thread who shares their stories, hopes, worries and triumphs.
And if I bored anyone - I apologize!
Robin
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Robin, certainly not boring! You offer a good perspective and a lot of wisdom. I'm so glad your cancer was found early and your girls are doing great.
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Thanks Jeannie!
I am very lucky.
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Robin, we love what you share with us. You have been through so much at such a young age. Our hearts are with you. It is wonderful that you are able to share with us exactly what you are experiencing and feeling and what you have experienced in the past. You are good for us and I hope that we are good for you as well.
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Thanks Honeybair . . .I have had quite the day emotionally. I had one of my two best friend's kids here and they are just lovely girls. Then we all went over to our other best friend's house where the kids crafted and decorated cookies and watched movies. We all exchanged little gifts and I was later in the washroom when I was overcome with emotion. These are the two women who got me through last year. They took my kids when we needed help, listened to me cry, and we there for me all the time. I've been driving myself crazy worrying about this triple negative crap coming back.
I've been wanting to share this but I have had to get my head around it first. I have a friend here who was diagnosed at Stage IV. She was hormone positive and then it morphed into hormone negative. She ended up with inflammatory breast cancer and they took a 15lb tumour off her chest this fall - they told her she was close to death it grew so damn fast. I found out on Wednesday that she was discharged from the hospital (they were doing radiation on her neck because she was having neurological issues and couldn't walk) and sent home. She can't walk at all now. Her husband was granted compassionate leave. No one has said they've stopped treatment but it is not sounding great. I'm very worried about her. And it just brought up all my own damn fears. I feel so self-centred thinking about myself at this time, too.
Thank you to everyone on this message board. I must seem bipolar sometimes happy one moment and a mess the next.
I'm snuggling with the ever present Hobbes now. He calms me.
Hugs
Robin
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Robin, you are wondering why you feel bad sometimes? OMG! What happened to your friend...words are insufficient.
I'll pray for her and her family..and for all of us!
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Timbuktu - thanks. After I posted that message, I decided to phone her house. I didn't think anyone would pick up and they didn't. I left a message telling her I'm thinking about her and would like to know what has happened since we last spoke. I told them (her husband sometimes sends messages) to either call me or email me only if they have the energy and inclination. It's a crazy story. Intellectually, I know it's NOT my story but it still is so upsetting.
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Wow, that is scary. This is one crazy disease. I'm freaking out a little just reading about it (it can morph into hormone negative and then turn into inflammatory??? 15lb tumor? WTF???) and I don't even know her. I can totally understand why this would be so upsetting to you. I hope she and her family are able to weather this storm (whatever that means. It's just one of those I-have-no-idea-what-to-say phrases).
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Cdfr - it is the strangest story, I know. They waited a long time before they removed her tumour. I don't know why. By the time they did, she was in agony and hospitalized. I got an email when I was on vacation in California that they had a special surgeon come in to remove it. She later told me that they would each week drain this mass and it was like black pudding. I was shocked. The surgeon who finally did it was horrified. She also has tumours in both her legs, her neck and her lungs. It just has taken over. She is 44 like me - 3 young kids a 3 year old, a 7 year old and a 9 year old.
I spent a long time in a bubble bath crying tonight. I've been really stupid I have to admit. I've been reviewing triple negative statistics. I know they really mean very little in the big scheme. I have had them memorized for over a year now as it is. I guess I hope I would find something that really gave me confidence that it would never return but that won't happen. I've got to stop torturing myself with this stuff.
You know what my friend said to me when I saw her last. No one ever said the words "consider yourself cancer-free" like I was told. And when I told her the follow-up appointment was proposed for one year (I lobbied and got 6 months) - she said oh I would love to be told that. She looked at me and said you are going to be OK, Robin.
She and I have a couple of friends in common. I saw one on Wednesday who told me all the latest info she had. She was crying because she was leaving for Florida and was worried she might never see our friend again. I wonder if I will either.
I've really got to pull it together. My friend who is going through this would be really mad at me if she knew how I was acting. I have to be better than this for for her. She would love to be in my shoes.
Robin
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Robin, I am so sorry that your friend is so tragically ill and can only imagine how this makes you feel. Seems like I recently read somewhere that there is new treatment being developed for triple negative though I do not remember the timeline. Anyway, all we really have is the present moment of each day. Don't know if you are familiar with the German philosopher, Eckart Tolle, but I highly recommend that you find some of his books and ingest what he has to say. He changed my life and my way of thinking. With your young family, it may be very difficult for you to carve out any time for reading. You can also view his lectures on You Tube.
Tonight I am hostessing a party for my high school classmates known as the Magnolias. One year ago, I was uncertain if I would still be around for this Christmas and I am very grateful to be here. Cancer is a disease of such uncertainties. I just live my life as if I am healed, That is all I can do.
Sending you a great big hug.
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Honeybair - I read your post and actually went and downloaded The Power of Now. I have a little time here - we are expecting a huge ice storm tonight and although it might just be rain for us we are having some "at home" time. I just made a nice meal for dinner and then realized after we ate it was only 5:45 - so I am upstairs with the cat while my husband cleans the kitchen and gets the kids ready to watch the national anthems on Hockey Night in Canada! They LOVE to do that and it is a big deal here. They really take the fact that they are 1/2 American very seriously and sing very loudly their version of the Star Spangled Banner! It cracks me up. So I am going to try to grab some reading time tonight and tomorrow.
I love the fact that your group is called the Magnolias. Steel Magnolias is one of my favourite movies. I am so happy for you that you are able to host them all, too. It sounds like so much fun. Isn't it nice to be able to do that sort of stuff again after last year? We are hosting my husband's family on Christmas after last year not even going to Christmas because I was doing chemo (and they are always full of germs). It is exciting to find all the nice decorative things we put out for Christmas dinner and get to use them again.
Please give us a detailed report of your party - I'd love to hear the details!!
Robin
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Just a quick note to tell everyone how grateful I am to have the support, compassion and shared experiences each of you have brought to this discussion board.
Merry Christmas, Happy Holidays to all.
I am thinking of you all tonight on this Eve of Christmas and wishing you and myself continued healing both physically and emotionally.
Much love, Julieho
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robin, recently a local lady died of cancer. I was shocked and scared until I found out she had been living with cancer since age 27, when she was diagnosed with breast cancer. She was in her 70's when she died, so almost 50 years on.........we are all individual, statistics really only give oncologists a treatment guide, they are not orognostic.....
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Hello everyone,
I am new to this thread. I am really glad I found it. I have been reading recent posts and I feel a little better just knowing that I am not alone feeling scared after the year I have had. I know all of you understand.
Robin: I am 46, Dx at 45, I have three children, two of which are twins, although mine are boys. I can totally relate to the NICU nightmare. I went into labor 2 months early and was hospitalized. They stopped my labor with massive drugs for one month. During that month I was so drugged and swollen everywhere that I was almost unrecognizable! I also developed pneumonia during that time, caused by the drugs to stop my labor. When my boys did arrive, 6 weeks early, they spent two weeks in the NICU, where I could not hold them. We spent our days praying to God to save them. I remember vividly thinking, please God if someone has to be sick make it me, I cant deal with my children suffering. Sometimes I think maybe he took me up on it, which is ok, but then again, I think God cannot be that way. My boys are now 15 and healthy, and I am grateful for that. I too hope that I am around to get them out of HS. But it does enter my mind that I wont. It makes me really angry.
I too have recently looked at stats regarding my prognosis. I wish I had not! I am one of the lucky 1-2% of patients that was dx with synchronous bilateral breast cancer. My onc told me that my treatment would be for the most serious of my two tumors, and that my prognosis was not affected my the lesser of the two. NOT what the literature said! I also had LVI (Lymphovascular invasion) as part of my pathology, another little item he really did not mention much. Literature says its another negative prognostic indicator for distant recurrence...something like 40% over ten years have recurrence. WTF? Nothing mentioned about that! So I am presently lost in the OMG this is going to come back phase. I try to forget about it....I feel pretty good, I am working out, lost 15 pounds, and am eating well. But I just cant
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Hello everyone,
I am new to this thread. I am really glad I found it. I have been reading recent posts and I feel a little better just knowing that I am not alone feeling scared after the year I have had. I know all of you understand.
Robin: I am 46, Dx at 45, I have three children, two of which are twins, although mine are boys. I can totally relate to the NICU nightmare. I went into labor 2 months early and was hospitalized. They stopped my labor with massive drugs for one month. During that month I was so drugged and swollen everywhere that I was almost unrecognizable! I also developed pneumonia during that time, caused by the drugs to stop my labor. When my boys did arrive, 6 weeks early, they spent two weeks in the NICU, where I could not hold them. We spent our days praying to God to save them. I remember vividly thinking, please God if someone has to be sick make it me, I cant deal with my children suffering. Sometimes I think maybe he took me up on it, which is ok, but then again, I think God cannot be that way. My boys are now 15 and healthy, and I am grateful for that. I too hope that I am around to get them out of HS. But it does enter my mind that I wont. It makes me really angry.
I too have recently looked at stats regarding my prognosis. I wish I had not! I am one of the lucky 1-2% of patients that was dx with synchronous bilateral breast cancer. My onc told me that my treatment would be for the most serious of my two tumors, and that my prognosis was not affected my the lesser of the two. NOT what the literature said! I also had LVI (Lymphovascular invasion) as part of my pathology, another little item he really did not mention much. Literature says its another negative prognostic indicator for distant recurrence...something like 40% over ten years have recurrence. WTF? Nothing mentioned about that! Oncotype Dx results were 19 (12% RS) and the other side a 5. I am desperatly trying to believe those numbers and not the numbers from the oncology journals I have been reading. So I am presently lost in the OMG this is going to come back phase. I try to forget about it....I feel pretty good, I am working out, lost 15 pounds, and am eating well. But I just cant seem to shake this feeling of doom. My one year out mark from dx is in January.
Thanks for listening....I am trying to enjoy each day, I know its all that any one has, but its difficult. I dont express my feelings to my family, they have been through enough! But pretending I am ok, or just fine, gets wearing. I am grateful I found you ladies...I am so sorry there are so many of us here. Thanks for listening.
Happy Holdiays
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Gully, welcome to this discussion thread. These ladies are a great group and they all really helped me through this past year. It will be exactly a year tomorrow, which just happens to also be my birthday, that I had my last taxotere, carboplatin and herceptin infusion. I continued on herceptin only until September 13th but my last combined "chemo" treatment was last December 27th. Sometimes I feel like it never really ended in some strange way. The drugs and worst of the side effects are gone, but the fear, the frustrating exhaustion that just seems to pop up out of nowhere now and then and the times where I am just still so raw emotionally are as present as ever.
Gully, the pretending you are just fine is I believe the hardest. I saw folks over the holidays that of course all commented on how nice it was that everything is over, etc but, as we all know there is a lot that we still struggle with. But, if you read through the post here you also saw that we do slowly heal, find more and more days that we can string together over time where we actually feel good and most of all, I have found that I am not crazy, or weak, or a lousy cancer patient for having the feelings, the periodic exhaustion, the body aches and the fear that everything and anything is a new symptom. This group has shown me this is all part of the process and we are here to support one another as best we can through it.
I send my love and gratitude to you all.
Julieho
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Gully - thanks for posting. It is a crazy thing to deal with isn't it? I think the hardest part is the putting on the happy face. And worrying what might happen to your kids if you don't make it. The fear just flashes in and out and it is not fun. However, I have made significant strides in the last couple of days, I think. I took Honeybair's words to heart and read The Power of Now. Some of the ideas in it really helped me get through the last few days. I am focusing on the present a lot more and when the crazy nasty thoughts enter my head I try this - I stop and tell myself they are only thoughts and they can't hurt me unless I allow them too. It's working for me so I'll take it.
Yesterday we hosted my husband's family here. It was dinner for 20 when it was all said and done. I pretty much prepped and cooked for three days and I'm done. I spent most of the day in bed with the cat - with interruptions to clean up, do some laundry and help my son with his new Lego robots. Tomorrow we head to Ohio to spend a couple of days with my parents. I'll see some of my aunts and my cousins and hopefully the weather will be good.
I'm excited that 2013 is coming to a close. My husband spoiled me this Christmas and when I mentioned it to him and he said I deserved it because I had "a year" and I "kept us all together". I'm not sure how much of the second part is true - but I tried.
2014 is going to be a great year. I'm here and I'm healthy. It's a good place to start.
Hugs
Robin0 -
I also had lymph invasion and had no idea that the recurrence rate was so high! Sometimes it's better not to know,
My son and daughter in law were just here with their 3 kids. They are both psychiatrists. I am an open person and spoke honestly to my dil about what I'm going through. Not only did I feel no compassion, I felt disrespect and repressed contempt. She told me to go swimming, do pilates etc. I tried to explain the pain I'm in physically. I shouldn't have opened up to her.
No one can understand this except for those who have been through it.
I hope we can all find our equilibrium, soon. As for others, unfortunately life will teach them a thing or two.
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Gully, this may be wishful thinking but are you sure it's 40% recurrence and not 40% more chance of recurrence? Could it be that if your chance of recurrence is 10% with lymph invasion it becomes 14%? 40% sounds so high!
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Timbuktu - it is amazing how many people say stuff like, oh just work out more, or stay busy and you'll be fine. They think it helps but it just makes me, and I think most of us, feel like we are "failing at this".
So glad you are all here - it is a process and we will get through it together the best way we can. However that looks.
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Tim,
The data I looked at was raw data. Of x number of women with LVI 40% of those women recurred within 15 years. The data was collected in the 1980's though, so after much thought, I am electing to forget it! I chose and received chemo because of LVI. My MO left it up to me based on my oncotype. I have to remind myself of that sometimes. I am choosing to believe that chemo helped to offset the overall risk. Sorry for the bummer data, I was having a really bad day. I am choosing to go with my oncotype RS of 12% over 10 years! Easier to live with. I think in the long run, its a crap shoot anyway.
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It's always better to know the truth, I think. I did read one statistic that said that deaths from bc have declined 34% since...I forget! chemo brain! I think around the 80's. I suppose the AI's and...what's that drug for HER? Oh gosh, my brain is such mush, I haven't had coffee yet this morning. But the point was that things are getting better and better, that's always the message isn't it?
It makes a lot of sense to me that lymph invasion is really really bad. But I hadn't read that for some reason. I suppose any time there is node involvement there has to be lymph invasion, right? Oh well, not much to do about it now. I did have chemo and I take anastrazole and that's about all we can do. This disease just sucks!
Thanks Julie for understanding. No one can really understand except us. This time around on the anastrazole, after a few weeks, my Achilles tendon stiffened up and it feels like a spike everytime I walk. How can anyone know? I wasn't excercizing before the anastrazole but my tendons felt soft. I'm off of the meds now for a few days and don't feel the improvement yet but I know it will come, excercize or not.
There is an arrogance to the young. I know I was the same way, thinking back. Wish I could go back and un do it.
You think the great good luck of health and energy is somehow your due. That old people or sick people should just get their acts together. Time will teach them, they really don't understand.
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