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Radiation December 2018

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Comments

  • pebblesv
    pebblesv Member Posts: 486

    The pups are sending their best to you as you recover Purplecat!

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  • egregious
    egregious Member Posts: 145

    Just had the two year anniversary of my cancer surgery. Clear mammogram and so grateful. The arimidex was hard the first few weeks but the side effects settled down and it's all good now. I did have a yellow discharge from the surgery side that they ultimately decided was just one of those things. Scared me though. I'm waiting until December to get the next bone density scan to see if the arimidex has pushed me over the line into real osteoporosis. I have been walking a half hour every day which helps my mood and blood pressure.

    It's a rough time for everybody. Hope you are all doing ok. Peebles thanks for all the dog pictures, I think we lived for those during December and January of our mutual treatment.

    I am grateful to see my daughters and grandchildren (three of them, when I thought there might not be any a few years ago). I am pulling up out of grief for losing my husband and mother in 2019 and trying to keep head above water and be sensible during the epidemic. It's northern California so pretty good mask compliance. This too shall pass.

    Love to all!

  • dani444
    dani444 Member Posts: 215

    egregious- So glad to read an update.Congratulations on the clear mammo, such great news. I am glad to hear that you are tolerating the anti hormonals. I wish I could say I was as consistent with exercise as you are!

    I just had a prophylactic mastectomy of my left breast 5 weeks ago and I am getting along ok. I am still struggling with tamoxifen SE’s but had a little break from it recently due to the surgery.

    All my best to everyone and wishing you all the best as we ride out these crazy times we are all going through.

  • pebblesv
    pebblesv Member Posts: 486

    egregious and dani444 so good to hear an update! I was thinking about our radiation group - it's October 2020 and officially 2 years since we all started this part of the journey together. So... happy 2 years to all the ladies that helped me through this aka our awesome virtual community. I would love to hear an update from all of you if you are still checking into the boards!

    Egregious you absolutely are a Wonder Woman. Congrats on the clear mammogram and I'm glad you have your children and grandchildren to continue to be with you in this world. I could not imagine going through this without my husband so I cannot fathom what you have been through, I can only say that I am in awe and admiration of your strength and I know your husband and mother are looking after you from another plane and I'm glad you have your kids and grandkids. And are doing well! It's so nice to hear the paw pics were appreciated when we were all in treatment too.

    Dani - wishing you all the best for a smooth recovery from the latest surgery! What a strong woman you are too to continue to face the next thing head on. I am also still struggling with tamoxifen SEs - I know I was the one with the fewer SEs but I can't seem to lose weight on tamoxifen no matter what I do. But I'm too wary to stop it if the weight thing is the only major issue but also then I worry because I think cancer is linked to weight to a degree but my oncologist and my family don't want me to stop taking it so I continue with it and I keep thinking that maybe I'll push through the weight loss wall. It is really frustrating though. So, I guess we can bear through the tamoxifen SEs together and do a toast when we reach the 5 year mark?

    My own update - we lost dear sweet 18 year old Tucker around a month ago now, our border collie mix and my protector boy. It's heartbreaking but we are comforted by the fact that he lived a really long life and now he's reunited with Kit Kat across the rainbow bridge. So now our paw family consists of Domino, the last survivor of the original pack who will turn 14 this week and who I hope lives forever, and new puppy Finley. Domino is my ESA and I just hope she has many, many healthy years ahead with me. Other than that, my husband and I have been working from home, I'm still taking the 10mg dose of tamoxifen daily, can't lose weight, but otherwise OK I guess on SEs. Oh and I've come to be OK with the permanent dent in my right breast from the lumpectomy. Husband doesn't mind and he and I are the only ones who will see it outside of doctors so I don't mind.

    Here's a pic of the original paw family - from left to right Domino, Kit Kat and Tucker:

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    Here's a pic of the current paw family - Domino and Finley:

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    Hope to hear from all of you with an update

  • salamandra
    salamandra Member Posts: 735

    I got confused which thread I was in a second ago - here are my ladies :)<3Heart

    Dani - sending you wishes for a speedy recovery!

    Egregious - congrats!! I am in a similar boat - I just had my mammogram last Monday and it was clear, so I think that puts me officially 2 years out :)

    Pebbles - I think about your dogs really a lot for animals I've never met. I'm so grateful you've made them part of all of our lives. Sending hugs for Domino and Finley and warm thoughts for Tucker and Kit-Kat Heart

  • purplecat
    purplecat Member Posts: 226

    I'd just been thinking it was about 2 years from diagnosis for most of us on this thread and wondering how everyone was doing. So good to hear the updates!

    Pebbles, I am so sorry to learn of the loss of Tucker. Such a sweet dog. A few months before my breast cancer diagnosis I had to say goodbye to the best cat in the world, and both experiences were equally traumatic and difficult. I'm glad you have your other pups to still make you smile.

    So glad you are doing well, Egregious, and sorry for all the trouble you have experienced since treatment. "This too shall pass" is something I need to remember.

    Dani, glad you are recovering well from surgery and I sincerely hope this is the end of all breast cancer scares for you forever!

    Salamandra, hooray for the good mammogram! And I had the same thought: here are my ladies! :-)

    I passed my 2-year mammogram and MRI about 3 weeks ago, hooray! They let me get a diagnostic mammogram, which I almost didn't accept because in a way it would have been less scary to just go in like a regular person and wait for the letter. My heart rate went all the way up to 116 while I was sitting in the room waiting for my images to be read. But the tech came back smiling, and I would have hugged her if not for COVID. I had the MRI the next day and was horribly anxious waiting for the results, jumping every time the phone rang and feeling a rush of panic at every voice mail from an unfamiliar number. I even googled the phone numbers before checking the messages because I needed to know if they were going to be from any of my treatment providers. But as the days went by and no one called I decided no news was good news. I finally verified it this morning by working up the courage to look at the report in my patient portal, which has been sitting there all this time.

    Other than that, it's been an interesting year, and I've posted bits of the story on various threads as it's unfolded. To make a long story as short as I can, in March I had a bilateral salpingo-oophorectomy and a D&C because it was determined that the tamoxifen was causing ovarian cysts , thickening my endometrium, and spiking my estrogen level scarily abnormally high. I opted to keep the uterus because the in-office endometrial biopsy had come back normal and life circumstances made the shortest possible recovery time much preferable, but then the D&C came back showing complex atypical hyperplasia, a precurser to the cancer linked to tamoxifen. Sigh. They gave it 3 months to clear up, but when a July D&C showed it hadn't, I opted for hysterectomy rather than continued rechecks or a hormonal IUD that would have been complicated with my breast cancer history. The whole ordeal took about twice as long, start to finish, as the breast cancer experience, with a lot more "great news, the scary test results you've been anxiously waiting for came back normal, but now let's sign you up for THIS one, and then you can wait for THOSE results." It has likely set off some PTSD, which probably explains a lot of my very fearful reactions to my recent breast scan experiences. I couldn't even schedule my first bone density test without checking to find out whether bone density tests ever uncover suspicions of bone mets. And even though the answer is no, and it sounds like the easiest test EVER compared to all we've all been through and I'm fairly certain I don't have osteoporosis, which is no big deal compared to cancer, I'm still anxious about it.

    In the meantime, I happily quit tamoxifen after the first surgery, gave myself a little time to recover, and started Femara. The joint pain made me feel 80 years old and made me feel exhausted, to the point that when they told me in July that the hyperplasia hadn't gone away, my first thought (after being scared/upset/frustrated at the news) was "Hey, if I have a hysterectomy then maybe that means I can quit this nasty drug and go back on tamoxifen!" I had my appointment with the breast team in the midst of all this, and they gave me the go-ahead, saying that being able to tolerate the full term of tamoxifen is better than struggling with intolerable side effects even if I'm somehow able to stand it for five more years. So I've been back on that for about 2 weeks, and it's going OK. I learned on the first round that magnesium helps prevent muscle cramps that were my most intolerable side effect, so I stocked up on that before picking up the first prescription. I'm not thrilled to be back on the stuff, but am relieved that I will never have to worry about any gyn cancers ever again and am still glad to be on a treatment that will reduce my chance of another breast cancer.

    Onward and upward, everyone!

  • pebblesv
    pebblesv Member Posts: 486

    Hello ladies! Just jumping in to wish everyone a Happy New Year and a much smoother 2021 hopefully.

    Salamandra - hugs back!

    Purple Cat - what a crazy and harrowing story to go through all that. Glad you are past it at least and hopefully this second round of tamoxifen will be smoother for you.

    As for me, I broke my two two weeks ago after never having had a broken bone ever. Probably because tamoxifen had a deleterious effect on bone density for pre-menopausal women which is me but the bone doctor still said he thinks I should 2000% stay on it and he’s not an oncologist so I guess I’m staying on it for now. Other than that we are doing fine. Domino and Finley love us working from home and as you can see they had a great holiday.

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  • salamandra
    salamandra Member Posts: 735

    Happy New Year :) And always thank you for the Domino and Finley pictures.

    What did you break? That sucks :( Wishing a fast healing!

    I'm doing alright. Very high anxiety lately that I can't tell if it's related to my job, my diet, or some combination, but it's making everything harder and I hate it. I was off the toremifene for a bit because I thought I'd try to get pregnant as a single mother by choice, but things not looking so good on the sperm front so getting back on and will stay on until/unless I'm 100% moving towards it.

    Here is my companion creature looking picturesque :)

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  • dani444
    dani444 Member Posts: 215

    Happy new year! Pebbles, love the pictures as always. They never fail to make me smile! So sorry about your fracture, hopefully you will heal fast!

    Salamandra, Anxiety is no fun. I too struggle with it since my treatment ended. I can understand how you feel and I am sorry it is bad for you right now.

    I am just recovering from covid, I feel lucky I had a mild case. It was bound to happen I guess since I take care of covid + patients. I really would like to have my sense of taste back! I was supposed to have some fat grafting and skin removal (on the non radiated side) but I of course had to reschedule due to the covid. I hope everyone has a good 2021!

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82

    Hi Everyone!

    I have not checked in for quite a long time and I am so happy that I did tonight. I had an appointment with my oncologist and another Zometa infusion yesterday so that made me think of checking in on everyone else. It was great to read updates from you. I've made it through two years as well. Once a year I take a 6-8 week break from Femara when the joint pain becomes too much. The reset seems to work. In the meantime I have developed a lot of osteoarthritis in my fingers which is so annoying and sometimes uncomfortable.

    It's been a devastasting year for me in other ways. In March 2020 my husband died, in May his 98 year old dad also passed away. We had two funerals in the same week in early July. Then in August my mom died. I've been struggling emotionally for a year. I've participated in a couple of bereavement groups, and did group therapy (Zoom) for insomnia and increased Zoloft, just to get me through it all. I have a second frozen shoulder too. I lost my part-time library job due to the library closing for the pandemic and I miss that so much. I have wonderful family and friends and lots of support but still a lot of challenges with trying to close up my husband's real estate office, trying to figure out so many things on my own, dealing with appliances that all seem to be breaking at once...oh my. I'm hoping for a peaceful year.

    It sounds like everyone has had some challenges in the past year.

    Dani, more surgery and covid! Thanks for being a front line worker. This must be such a stressful time. I hope your work schedule allows you some time to get enough rest.Take care! Purple Cat, what a time you have had. Waiting for test results is the worse. I hope you are doing okay back on Tamoxifen. Your writing indicates a great attitude about dealing with all of your trouble. Salamandra, I hope your anxiety is under control. I love it (not) when people tell me "just don't worry", like one can just stop. I'm glad you have a beautiful cat to cuddle. I hope that brings some comfort. Egregious, I remember when you lost your husband and I thought about you dealing with a huge loss and recovering from cancer. So many times I thought to send you a personal message, but I never did. I think I didn't know what to say...and now I know there are no words, but I wish I had told you I was thinking of you. I'm glad your family is so supportive. Pebbles, I am sorry for your loss too. People who have never had pets might not understand how these furry creatures become part of our families and what a great a loss it is to lose one. We all loved your pictures so much. Your dogs helped to cheer us and make us smile! I hope you are recovering from your break.

    I'd love to hear more updates and hope that others will check in. Be safe, be well.

  • salamandra
    salamandra Member Posts: 735

    LPLlibrarygirl, what a nightmare year for you. I am so so sorry. I feel like you're going through one of those times when waking up and making it through another day is itself herculean. Thinking of you!!

    I'm doing much better. I think it wasn't really anxiety but too much potassium trying to overcompensate for my new diet. I had a little scare needing a biopsy but that came back negative. Now I feel like I'm back to just my baseline work stressors and it actually feels pretty good.

    One thing I've been thinking about a lot lately is whether to try to use my frozen eggs to try to conceive. I'm 41 years old now, single, and just economically viable enough to make this happen, though it would definitely increase financial precarity. It kind of feels like, if not now, when. Part of me very much wants to, but part of me is like, wtf, why, wait this feeling out and it will go away. The biopsy scare definitely made an impact. I wish I had more clarity on this.

  • pebblesv
    pebblesv Member Posts: 486

    Ladies it’s so wonderful to hear from you, I so value this virtual community we’ve created. I haven’t checked in since my New Year’s updates so am so sorry to be responding late to some things!

    LPlibrary my heart goes out to you especially. You are such a strong woman to be facing so much - we are here for you, I will try and check in more regularly, and continue to persevere. One step at a time, one foot in front of the other, you just need to persevere through this difficult time.

    Salamandra - I guess there was a spell check on my original post. I broke my toe! All I did was stub my toe and it broke so it makes me wonder if that’s a side effect from tamoxifen. But I continue to take it dutifully. I’m healed now and I did swim with a broken toe at week 3... the first couple weeks I couldn’t put any weight on it but the last few weeks of recovery were more normal. And I understand the anxiety - I feel it too as I’ve gained a lot of weight with tamoxifen and work late often. I get some zen with swimming but need to find more balance still too.

    Also on whether to conceive, it all depends on how much you want to have children or not. I’m 45 and my husband and I created embryos before I started tamoxifen and none of them “took” so we have resigned ourselves to the fact that we won’t have kids and we have to be OK with that. There is a big difference between 41 and 45 so if you really want it, go for it now.

    Dani - what a relief that you at least had a mild case of COVID and made it through! You are amazing with how much you’ve been through. Have they been able to schedule the fat grafting and skin removal yet?

    Anyways as for me, my toe is healed, I’m swimming 2-3 times a week (72 laps in an hour in an Olympic sized pool!) which is a benefit to working from home (we have a community center across the street), I continue to take tamoxifen but have gained massive weight on it which is frustrating and makes me feel like I’m not myself and wonder if I should stop taking tamoxifen but then my family and husband and oncologist of course don’t want me to stop. I did just get my mammogram results and I continue to be in the clear! Everyone one of you can understand the anxiety at getting a mammogram and then the relief at the clear results.

    Oh and perhaps most importantly, Domino and Finley just got groomed so here are some adorable fluff fluff pics.


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    I hope I continue to hear from you and we continue to share our updates on this journey together.

    Pebbles

  • purplecat
    purplecat Member Posts: 226

    Popping in to say hello to anyone who might still be around. I tend to come back when something is going on, share what I can with newbies and others, and then drift away again when things settle down — which, I'm grateful to report, they always have so far. This year brought me an ultrasound-guided biopsy in May and then an MRI-guided biopsy earlier this week, so stuff has definitely been going on. Thankfully, everything has turned out to be scarring, likely from the radiation. I have a thread in the "worried about recurrence" forum if anyone's in the mood for a scary story with a happy ending. I hadn't had any issues until this year and was surprised to learn it can start up after things have been fine for so long. Over the years I've now visited every floor in my 6-story cancer center, endured four different biopsy methods, and have, oh, I think at least five different types of scar tissue going on by now. Maybe more. They really need to start issuing us punch cards for all this stuff. I hope you are all doing well, whether or notyou are still logging in here, and will soon be enjoying a treatment-free December very different from what we all experienced four years ago.

  • pebblesv
    pebblesv Member Posts: 486

    Hi purplecat it's good to hear from you! I'm the same way - check in every now and then, don't check in for awhile especially when things are going well. Glad you're story has a happy ending! Happy 2023 Year of the Rabbit to everyone and I hope it brings good things and good luck to us all.

  • salamandra
    salamandra Member Posts: 735

    So nice to see some familiar names <3

    I ended up not using my eggs and children are looking unlikely for me, though I'm apparently not ready to pull the plug completely.

    Lately I started getting some heat/discomfort on my under arm near the SNB site, and I have an appointment coming up with my doc about it. Then MRI again in March. I'm so grateful for my health and relative stability but it sometimes feels like this just keeps going.

  • pebblesv
    pebblesv Member Posts: 486

    Hi Salamandra - totally understand how you're feeling. For me, I needed to take tamoxifen for 5 years so it has kept going. This would be the last year of it, and hopefully after that I can resume / get back to some normalcy barring nothing else happening...

    My husband and I had some embryos and they didn't "take" so we have contented ourselves with our "paw family" life and this boy Finley is basically our little boy now. We just take life as it comes and make the best of it.

    Best of luck with your appointment and upcoming MRI!

    Finley and my husband:

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  • pebblesv
    pebblesv Member Posts: 486

    Hi Salamandra - totally understand how you're feeling. For me, I needed to take tamoxifen for 5 years so it has kept going. This would be the last year of it, and hopefully after that I can resume / get back to some normalcy barring nothing else happening...

    My husband and I had some embryos and they didn't "take" so we have contented ourselves with our "paw family" life and this boy Finley is basically our little boy now. We just take life as it comes and make the best of it. Whichever way it turns out for you and kids, life can be full and wonderful!

    Best of luck with your appointment and upcoming MRI!

    Finley and my husband:

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    Pebbles

  • salamandra
    salamandra Member Posts: 735

    Finley <3<3

    The doctor thinks I do have lymphedema in my arm, and the pain is getting worse. I have an appointment on Tuesday with their lymphedema clinic.

    The doctor didn't seem very concerned or surprised at all. But I really hope there can be some good help for it. I hate this!

  • purplecat
    purplecat Member Posts: 226

    Salamandra, so sorry about the lymphedema. “Just keeps going” … that’s so true, and any time there’s pain involved it’s especially unsettling, I think. Even when a benign cause is proved, it’s a nagging reminder. I hope they can give you some successful treatments.

    Pebbles, your Finley is adorable! No human kids for me either, and with the hysterectomy it’s now out of the question, although I was pretty close to menopause by the time this all started anyway. I have had some grief about it, but for the most part am happy being an aunt and cat-mom. Like you, I’m looking forward to being done with tamoxifen in a year and hoping to notice improvements in various symptoms. At the same time, I think it will be hard to let go of something that’s protecting me. We’ll see .


  • salamandra
    salamandra Member Posts: 735

    Just checking in. I guess I'm not the only one coming up on the 5th year anniversary of my surgery. I have my annual mammogram coming up as well. I've been feeling a lot more anxiety lately. I know it's an arbitrary number, but I think I so badly want to be able to celebrate 5 years NED, and now my brain is messing with me. How are others who are still around doing with this anniversary coming up?

  • dani444
    dani444 Member Posts: 215

    So good to hear from you Salamandra. Oct 25th will be my 5 year surgery anniversary. It is crazy to me that it has been 5 years. When this thread popped up I went through a few of the old original posts. I got teary eyed at looking back at all the wonderful people that helped hold me together through rads. I too feel like 5 years is a big milestone but can sympathize with your anxiety. I am currently in PT for what they say is fibrosis and scar damage from rads. But there is always that little voice that has me wondering if they are missing something more sinister. I hope you have an uneventful mammogram! I try to look back and recognize that I did in fact do my best at getting through all this crap. But at the same time. I sometimes wish I could vocalize exactly how hard survivorship has been for me. All the best to you and the group. I appreciate being a part of such a supportive group.

  • salamandra
    salamandra Member Posts: 735

    Hi Dani,

    Thank you <3 I was thinking of starting or finding another thread more specific to this issue, but like you, there is still something so meaningful and important to me about this thread, this group of people who were so important for those early months.

    That sucks that you are dealing with after effects of the radiation. It's funny how some days, or weeks even, it's like I never dealt with cancer. And then other times it takes up a lot of my energy/feelings.

    I guess they are being super cautious with you and would have figured it out if there were anything more sinister happening, but I definitely understand the fear. At my last appointment I asked about pangs near the original site and after the exam, she said it was related to nerve damage that might continue bothering me on and off forever. On the one hand, that is so so so much better than recurrence. On the other hand, I do feel like there's a lot that they don't tell you about the long haul of even 'good' early stage cancer. Or maybe they did tell me, but there just wasn't room in my brain to take in anything beyond 'you're going to live!' Which was huge.

    Good luck with the PT - I hope you are better at keeping up with exercises than I have ever been!

  • purplecat
    purplecat Member Posts: 226
    edited October 2023

    Hi Dani and Salamandra, so good to hear from you!

    Lots of feelings here too. Five years feels like such a milestone. On the one hand, five years, yay! On the other hand, they want me to continue with hormone therapy for another 2-5 years, which feels like "Tell me I'm never going to really be free of this without telling me I'm never going to be really free of this." But I also realized I really didn't feel ready to let go of my safety net, so I feel almost relieved to be staying the course with the switch to anastrozole. It does feel like a whole new phase, like I've successfully climbed a mountain only to see another one looming ahead.

    My mammogram is scheduled for January, and my anxiety really spiked just from getting it scheduled. I'm able to get diagnostic mammograms, getting the results read immediately, so that's an option, but it means walking back into that cancer center. Or, I can get a regular old mammogram at a much less emotionally fraught location, but that means going home to wait a day or two for results, which is excruciating. I've started having some trouble with scar tissue too, and had two biopsies last year, so I'm sort of braced for the idea that more of that sort of thing is probably ahead. Sigh. Early stage and treatable was such wonderful news compared to what it could have been, but it was definitely a life-changing experience.

    But. Five years, yay! I may never quite reach the point of feeling safe celebrating any of these milestones. Superstitious, I guess. Nevertheless, five years ago I wasn't sure where I'd be now, and if I had lived 100 years ago the situation would almost certainly be a lot more dire by now, so I am grateful.

  • salamandra
    salamandra Member Posts: 735

    Well I guess technically it's been five years but I really really didn't like how much time the sonogram tech spent on my armpit and the questions she was asking me, and the results were supposed to show up on the portal today and they haven't yet. I'm trying so so hard not to borrow trouble.

    My regular follow up with my oncologist is tomorrow afternoon. Hopefully the results will be in by then one way or the other? I so don't want to ride this ride again! It's so hard not to stress.

    Thinking of you all gives me strength!

  • pebblesv
    pebblesv Member Posts: 486

    Hi ladies - I agree it's so nice to still be able to check in with all of you and it really does feel like we've gone on this journey together and I remember too how much it helped me, and how much I felt I wasn't alone in this. So I too like to check back on our original thread and hear from as many of you as possible, and it's great to still hear from salamandra and dani444 and purplecat directly!

    Happy 5 years to all of us - we are all still dealing with this, but let's take a moment to also celebrate that we are all still here and official 5 year survivors! That in and of itself is a milestone.

    Salamandra - how did it go with the oncologist? I know this is back in Oct. but I haven't checked in for awhile so just saw your post now.

    purplecat - I'm waiting to hear from my oncologist too, I hope to wean off tamoxifen and be fully off it it by January but I guess I will wait to hear what he recommends. If I do need to continue, let's do this together! Also it's somehow really comforting to me that you too are making the most of being an aunt and paw-mom like me, I have found peace with it and I hope you have too, life can still be really full and our maternal instincts satisfied with that. And hey, maybe better for the pocketbook so I'm finding the silver linings. :-P

    Dani - I feel the exact same way re: all of us having gone through this together, and happy 5 years post-surgery by the way! It is a milestone and I think we can allow ourselves a moment to celebrate reaching the 5 year milestone, even as we deal with other things.

    Anyways, I just received my latest mammogram results and it's in the clear so I'm currently feeling elated and I feel like crying too but happy tears. Hoping I can go off tamoxifen and optimally resume a 'normal' life (well one with a big scar on my right breast and the side effects of tamoxifen but as normal as it gets now with this journey). I am still proud of all of us for making it to the 5 year milestone. Here's a cute pup pic to celebrate, welcome Cocoa, our newest paw family member, along with Finley!

    Plus I want to give a nod to my sweet Domino. She crossed the rainbow bridge but she was the one that got me through radiation and all my treatment and meetings and will always be in my heart. She lived a long and healthy 15 years, my sweetest little spirit animal. This picture really reminds me what we went through - here she is, sitting in the changing room so sweetly just after I completed radiation treatment (they would let me bring her and then the techs would take her to their station so she could watch me from the other room, then they would bring her back in when we were done with radiation). Having Domino with me really helped me through that time!