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Young with MBC

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moderators
moderators Posts: 8,195

This is a thread for those 45 and under who have been diagnosed with metastatic breast cancer, and facing the unique challenges associated with receiving this diagnosis at a young age. Please feel free to discuss here, share your story, and support each other!

--Your Mods

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  • fuzzysocks
    fuzzysocks Member Posts: 13
    edited August 2019
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    Figured I'd post on this with my story and hopefully connect with other young women as I must admit it sometimes feels lonely being relatively young (36) with this.

    I was originally diagnosed with stage 2 in 2017. stage 2 became stage 3 after surgery because of the lymph node involvement. Did the typical year of chemo, surgery, radiation which was difficult, of course. but i had a great support system and felt relieved when it was all over.

    A year later the back pain started. It was excruciating. I was barely functioning and stuck on the couch, taking dilaudid all day and night with not much relief. my family doctor sent me for an urgent MRI (after the emergency department turned me away, telling me it was likely just a slipped disk), and 5 minutes after returning home from the MRI, her office called and asked me to come in right away and to bring a family member with me. needless to say, my life has been a rollercoaster since. The hardest thing about it all is my kids. they're 5 and 7 and i just hate that they have to worry about this. i will never forget the moment when my 7 year old found out it was back. he just started screaming/crying in complete sadness/anger/heartbreak/anguish/fear.

    I try and stay positive though sometimes it's difficult. cancer has taken so much from me, but it has certainly made me so aware of what's important. so, i'll continue to live life the best i can while focusing on spending my time with my family and friends.

  • jsniffs
    jsniffs Member Posts: 136
    edited August 2019
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    FuzzySocks - I'm in a somewhat similar situation. Diagnosed when I was 36 (and pregnant) with what they thought was stage 2 in 2016. Did active treatment in 2016. It turned out to be stage 3 after surgery because of the # of lymph nodes. I didn't have any back pain, but I had abnormal labs, which triggered a bunch of scans. I was diagnosed with MBC in late 2018. I have a 3 year old, so I haven't had to explain a lot of details yet, but the questions have started coming. I am anxious about having to explain things in the future.

    For now, I try to stay positive and try to focus on how *I* feel physically, mentally, and emotionally...not how I think the doctors or anyone else thinks I should feel. With MBC, at least there is some hope. I try to read a lot of inspirational stories. Hopefully things will get easier once you know more details and have a plan. Sending you lots of love and positive thoughts!


  • fuzzysocks
    fuzzysocks Member Posts: 13
    edited August 2019
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    Jsniffs- so yours is so far limited to the bone too, is that right? I'm hearing so many stories of women diagnosed during or after pregnancy! what a way to make a busy and stressful time (pregnancy/new baby) even more stressful! but i will say that for me, having young kids during this, does give me a good distraction lol

    I think i'll feel better after i meet with my oncologist tomorrow to discuss my latest scan results. I just had my ovaries removed a week ago, so hopefully that helps too!

  • edyste
    edyste Member Posts: 2
    edited August 2019
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    My story- found a lump while breastfeeding my 2 month old. I am 35. A couple weeks later find out it’s IDC, then the news kept getting worse and worse- stage 4 de novo. Mets to bone and likely lungs. It’s been 5 months now and living with mbc has become my new normal. Happy that I am feeling great.I agree little ones are definitely a distraction! Glad I there’s a thread for us young ones.

  • jjonik
    jjonik Member Posts: 4
    edited August 2019
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    Hi all!

    Diagnosed with stage 3 at 30, almost 31. Had 9 weeks of taxol, 4 A/C, bilateral mastectomy, 8 weeks of radiation, tamoxifen and I was in the home stretch for a while. 33 now and it's recently metastasized to the bone (after neck and hip pain) and likely lungs.Had some radiation for some issues on the cervical spine and both hips, just finished round 3 of HP and 1 of Taxotere. Managed chemo really well the first time around, this time it's kicking my butt already, more so the P.

    Got married two weeks ago and am luckily riding high from that. Really nice to know this group exists!

  • formyloves
    formyloves Member Posts: 11
    edited August 2019
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    original dx at 26 with stage 3c IDC. Metastaic diagnosis in 2015. Progression while on HP and started Kadcyla today. Here we go again.

  • AllyBee
    AllyBee Member Posts: 99
    edited August 2019
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    First diagnosed at 33 after pain in my breast. I had a lumpectomy then axillary node clearance with 2 out of 13 nodes positive. I did AC then paclitaxel followed by radiation. A little under a year later I had an enlarged lymph node on the opposite side which was found to have cancer cells. Scans picked up something on the breast cancer side and a 2cm brain met. I had a crainiotomy followed by gem/cargo and have been NED since. I'm currently on Xeloda and will probably stay on it until something else shows up as I'm triple negative. Last year I didn't think I'd still be here today, I'm getting scan results on Monday and hope I'll be around for a lot longer.

  • BackToNature
    BackToNature Member Posts: 2
    edited September 2019
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    Hey there,

    Thankful to have this forum, but I am so sorry that each of you is going through this. I found this at 1:30 am while staying up due to nausea that won't let me sleep. My story is similar to many.

    Diagnosed in late 2016 with what was stage II but later discovered stage III breast cancer (ER+, PR-,Her2+). Treated with chemo, mastectomy (axillary nose removal), radiation and oophrectomy, and ongoing infusions until mid 2018, “free" of cancer until June 2019 recurrence as MBC in opposite lymph nodes, skin, lungs and bones. My kids are now 5 and 7.

    Thankful for each moment

  • moderators
    moderators Posts: 8,195
    edited September 2019
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    Sending you hugs, BackToNature, and welcome to our forum. We appreciate you sharing your story. Medicating

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited September 2019
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    Diagnosed on my 40th birthday de novo with extensive bone mets. I had a lump that was diagnosed as a fibroadema in 2011...kept my eye on it...seemed okay! Cut to March 2017 when breast seemed to blow up with a large tumor and two swollen lymph nodes in right armpit. I am here. So far moving along about 2.5 years from diagnosis and starting treatments. Doing okay! Fingers always crossed, always knocking on wood.

    Sorry to those who have had to go through this with little ones.

    I don't have any kids...and was put into medical menopause so not gonna happen in this lifetime. Embracing being single as best as I can.

    Hugs,

    Philly

  • BackToNature
    BackToNature Member Posts: 2
    edited September 2019
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    Jjonik, I feel in the same boat when it comes to treatment this time around. I chose a plan that was a little more aggressive for stage IV but nowhere near as aggressive as my treatment when it was stage III and this time it is kicking my butt a bit more. That said I do find that my lows aren’t quite as severe or like a rollercoaster. I am just hanging low much like I did after 5 rounds of chemo.

    Likely those with littles enjoyed first days of school by now! Yay to a little break in the day if you get it! I used to work full time and was fortunate to have a job that allowed me to go on medical leave. For me this helped bc my job was high stress that definitely doesn’t help in the healing process.

    How are others spending their time these days littles or not? Hopefully everyone is finding moments of peace or gratitude in each day:

  • fuzzysocks
    fuzzysocks Member Posts: 13
    edited September 2019
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    yes, BackToNature, my kids are back at school and it's been nice to have that routine back! my youngest started kindergarten and although it's only half-day she loves it and it gives me a few hours to relax!

    things for me have been busy, busy, busy. had my appointment with my oncologist (yay! no new progression!), settling in after moving to a new house, and just had my oophorectomy. im ready to try and have a more relaxing fall!

    the one thing i'm struggling with, and i'd be curious to hear all your thoughts...work. has anyone returned to work? i still just don't have the energy and i just don't know if it'll be worth it?? i stopped work (i was/am an RN) when initially diagnosed and i wasn't able to return before my stage 4 diagnosis. now i just don't know what to do.

  • Momchichi
    Momchichi Member Posts: 98
    edited September 2019
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    hi Fuzzysocks,

    Your work question is one I struggle with, too. I’m a teacher and had returned to work when still stage 3 and was in the midst of finishing my license to change subject areas and only had the semester of student teaching left. I got diagnosed with a single met in my lower back over the summer and did a course of radiation when I was supposed to be getting my classroom ready for back to school. Now I’m on a new chemo and wasn’t sure what to expect so declined my student teaching placement. Now I feel like the world left me behind! I enjoy walking each day with my mom and we’re looking for volunteer opportunities to keep us busy. My two middle schoolers are in tons of sports and activities which help fill my time. But it’s still like I’m lost, teaching was my passion - if I knew I had several years left, I’d continue teaching (germs and all!) but if the 2-3 year prognosis I’ve found online is all I get, I guess I ‘d rather enjoy my forced retirement and plan tropical vacations with my family. I guess it’s all part of adjusting to our new life but I’m a little bummed to be hanging with the elderly mall walkers right now!

  • B-A-P
    B-A-P Member Posts: 409
    edited September 2019
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    I was diagnosed at 30 , de novo to liver. One teeny 5mm met. I was brushed off for two years after worsening symptoms of pain and discharge. No one would give me an MRI. Finally when my nipple started to to leak blood, my surgeon finally did a duct excision ( But not after trying to talk me out of it). It was discovered that I had dcis in that duct, was sent to the cancer centre for that to see if there was any treatment for the dcis that was removed. In between all that, I finally got my MRI. when I met with the radiation oncologist for the DCIS, she informed me that she couldn't advise me on that as my MRI was extremely concerning. That started the cascade of tests that lead to my diagnosis. My Met showed up on pet and MRI, but becuase it was so small, they couldn't identify it. SO we waited to see what chemo would do. After a pet after my 4th cycle, it not only showed my liver was clear, but so was everything else.

    At that point it was decided the liver spot was a met , but that I was oligometastatic and could be treated with curative intent vs the palliative treatment they were giving me. Current scans are still clear. I'm one year out. Hopefully many more to go :)

  • Nitra27
    Nitra27 Member Posts: 1
    edited September 2019
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    I read my onc's report and her treatment plan is curative. I have 3 very small liver spots. I was confused when I read that but if she thinks we can know them out I'm on board for that 😉.


  • edyste
    edyste Member Posts: 2
    edited September 2019
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    I am working. Right now im responding to treatment and have few side effects. I don’t love my job but it’s nice to have something to occupy my mind and be around friends/colleagues. And it’s nice to be making money!!Due to treatment I am out at least 1 day of the week.

  • fuzzysocks
    fuzzysocks Member Posts: 13
    edited September 2019
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    Momchichi,

    you've put into words exactly how i feel - i feel like the world has left me behind! and like you say, if i only have 2-3 years then ok, i don't want to work. but what if i have 10 years?? then maybe i should work. but i guess there is no way to know yet.

    in other news i've been trying to get more exercise, but i'm so fatigued! i know exercise will help with that, but it's hard to be consistent!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited September 2019
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    I hear you friends about the work issue.

    I have my own business and had JUST started it up when I received my de novo diagnosis. I remember asking my MO if I should get onto disability. Both he AND my mother told me not to, as that it is possible to live with this disease a pretty “normal” life.

    I did cut down on hours and now I work 4 days a week typically. I love my job and what I do, and i am my own boss so if I leave for a weeks vacation that’s money lost. And any sick time is on me too.

    It’s a conundrum but what can ya do?

    I plan to keep working as long as I am able to, because this work brings me joy and happiness.

    I do worry what my patients will say/think if I ever “appear” sick, like from a new treatment. Somehow I managed to get through adjusting to 4 cancer medications all at the same time while continuing to treat patients. That right there gives me hope that I can continue to conquer any med changes without too much of a hitch moving forward. Trying to stay optimistic

  • JFL
    JFL Member Posts: 1,373
    edited October 2019
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    Hi Fuzzysocks, I have continued to work and am nearing 5 years in 1.5 months. I was diagnosed with pretty late stage disease in 2014. Liver and bones full of mets, with life threatening hypercalcemia to boot. I didn’t know how long I had but just take it one day at a time. I do feel tired and wish I slept more but feel very satisfied and it is good for my mental health to spend large parts is my day focusing on things other than my dx. For that reason, I am glad am continued to work but for each person it is different, based on circumstances (physical, family, financial, etc.) and personal preference. I was diagnosed while pregnant and have a 4 year old. Chasing after him is a joy but definitely harder from a physical perspective. At work, I sit at a desk and therefore is not too physically taxing, although the mental requirements are very high. Fortunately, my mind has remained sharp, other than being forgetful about non-important things in my personal life and occasionally using the wrong word. My forgetfulness is probably worse than it should be due to my failure to go to bed at a decent hour. Lifetime night owl.

  • novagirl
    novagirl Member Posts: 82
    edited October 2019
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    JFL-I haven’t talked with you on here in a while. You are one of my heroes here! A wealth of knowledge, always willing to help others, working raising a little guy all while making it look easy!

    I was first diagnosed at 31 while nursing my son. I made it 5 1/2 years before being metastatic.

    My friend (it’s my cousin’s sister in law) went metastatic the same week as me in December of 2018. She is triple negative. She has blown through treatments. Her son is 5 years old.

    I’m at home watching the World Series. My son is asleep and my husband is watching at my parent’s house.

    I just found out my friend is doing home hospice. There are no more trials or treatments. I sobbed so hard and for so long tonight. I haven’t cried like this since December when I got the news. I’m being told she’s at peace with this decision (there’s no other choice) a true tragedy to not see your son grow up. I know she’s so scared. I can’t talk or text with her anymore. I’m so sad. I can’t help her.

    I just feel like I can’t pick myself up. This pain is so awful.

    I recently resigned from my career. We’ve been so busy with travel and events I haven’t settled into a routine yet.

    I had scans yesterday. I’ll continue on Ibrance being stable.


  • JFL
    JFL Member Posts: 1,373
    edited October 2019
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    Hi Novagirl! Great to hear from you. It has been a while! I am sorry to hear about your friend in hospice. Gives me a sick feeling just thinking about it. I have lost many young friends over the years. It does not get easier or more predictable. Every time it seems like a bit of a shock. I hope you have a chance to settle into a routine as a newly "retired" woman and enjoy some of that newfound time - to sleep, spend time with family, exercise, take up enjoyable hobbies or activities, whatever brings you joy.

  • novagirl
    novagirl Member Posts: 82
    edited October 2019
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    Great to hear from you too JFL!! Thanks for your kind words about my friend. I know we on this board know this realty all to well. You are right, it never makes it easier. Today, I can’t shake the sadness and the grief. I’m telling myself that’s okay. Tomorrow is Halloween and my boy is super pumped to be Teen Wolf. It started out as Michael jackson warewolfe but everyone at the DC Zoo thought he was Teen Wolf so now he is teen wolf! Lol!

    I can’t remember, does your son know about your MBC? My son does not.


    image

  • JFL
    JFL Member Posts: 1,373
    edited October 2019
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    Teen wolf, that is great! My son will be Thor tomorrow. He has selected his own costume the last two years. He does not know about my BC, although over the years he has heard things that he has repeated about my back hurting, me feeling "so tired" and he will occasionally repeat those things. He got scared when I had a port put in 6 or so months ago. It does look freakish and I had an allergic reaction to the glue after the surgery which made the original wound look pretty bad as well. I thought the Power Port would look better than the standard port but it looks much worse in my opinion and not any less noticeable, with the three lumps. I learned a few weeks ago that my aunt was recently diagnosed with early stage breast cancer. At dinner, I told my DH that my aunt was diagnosed with BC and my 4 year old son said "Did she die?". We have never talked to him about my cancer or the term "cancer" in general. I have no idea where he learned about that but was shocked that he came up with that on his own. If/when I tell him, the task is going to be much harder than originally anticipated. He knows too much. He does ask about death from time to time and wants to understand, what happens when people die, what happened to Jesus and why is he no longer a human and where is God now if he is not on earth, as he wants to understand it. I think he picks up this stuff through a combination of Catholic school, his classmates with older siblings who learn a lot from the older ones and from YouTube for Kids. We don't talk to him about death either, although I will do my best to answer my questions when he asks.

  • novagirl
    novagirl Member Posts: 82
    edited November 2019
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    oh gosh JFL, I feel like I could talk with you for hours. We are in a similar situation with our boys.

    Before we get to that...I hope Thor enjoyed trick or treating! We are big Avenger fans in our house too!!

    I found out my friend Wendi passed last night in her sleep. I have often felt guilt because my QOL has been so much better than hers. She suffered and she wasn’t able to do the things she wanted to with her son and her husband. She was robbed. Her triple negative cancer was never beaten back. It only grew.

    Last week when I was on BCO and I found out Wendi was in home hospice. I was in despair.

    I reached out to an organization that night that I had originally kind of written off just because my son doesn’t know about my diagnosis.

    This sweet woman wrote me back and asked if she could call me. She called me at 7:30 pm. She was an angel and was just what I needed at that moment.

    The organization provides trips to families with a parent facing a terminal diagnosis. I had made up my mind about telling our son at this point in time. I often get annoyed because people who are not in this situation like to tell me how this is the incorrect choice.

    Anyway, this woman lost her mom when she was 7. She presented data and facts and opened my eyes and helped me so much.

    She said data shows kids do better when they have more time to prepare. She cited a small study that hooked people up to vital monitors and put them in two different rooms. The first room they popped a loud balloon without warning. The second room the warned people that they would pop the balloon and it would be loud. Clearly the people who had advance notice were less stressed.

    This is so silly and simple but it made sense to me.

    Our son attends Catholic school too. He also doesn’t know what the word cancer means.

    I told her my husband had asked me when I was first diagnosed what we would say to our son when he asks us if I’m going to die? I told my husband affirmatively we would tell him NO.

    She said that we shouldn’t say that. To say, we don’t know. I’m here now basically and assure them as and if we get new information we would tell him.

    She gave me a new perspective and has made this gut wrenching conversation seem less impossible

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited November 2019
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    Hello my name is Cazzy and I'm 32 and diagnosed at 32 from the UK. I'm a carer by profession and was having back pain few years doctors put down to my job. I coughed once and got lump my physiotherapy thought pulled muscle was not three month later showed by sister ordered he ring doctors next got appointment same day and referred she looked my back referred me get scan sister mentioned worry of spinal compression anyway got emergency admitted that day had 2 scans next day and biopsy Wednesday confirmed mbc xxx

  • Malinda815
    Malinda815 Member Posts: 12
    edited November 2019
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    My first time diagnosed I was 28. This September I turned 30. Cancer is back and it’s very bad. Everyday is a struggle for me. I am in depression now. I am not a fighter. I am getting chemo weekly . I don’t know if I have a future a

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited December 2019
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    Malinda I am sitting here wishing I could offer you some relief from the struggle you are experiencing. I am so sorry you are going through this. Please try to remember that it is 100% normal to be depressed especially when your body is feeling so terrible. Try, if you can, to embrace whatever beauty you can find right now. If it is in the bloom of a flower, a piece of live moss in the palm of your hand, a snoring dog or a purring cat on laying on or besides you. Let the tears and grief flow as it needs and wants to. Hugs from Philly

  • mshar
    mshar Member Posts: 19
    edited December 2019
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    Malinda I so wish that you weren't going through this but please know there are many wonderful people on these boards to talk to and who will help you keep your head above water. I'm almost 29 and was diagnosed de novo metastatic last year. I don't know if I have a future either but I still have today and I try as hard as I can to keep myself focused on that. It doesn't always work, and that's ok too. I did chemo for 20 weeks so I can understand how you feel. It may not feel like you're a fighter but just by making it to your appointments you are doing so much. Be kind to yourself, we are all with you.

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited December 2019
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    Hey hey my name is Cazzy and I was diagnosed at aged 32 (still am 32)in June this year I had been on off having back problems for two years but doctors put down to my work which was being a care assistant in community but my mobility got slowly worse I coughed and lump appeared told my physiotherapist who said probably pulled muscle is thought nothing of it. Anyway was off few times with my back one time was spasamjng so out on sick anyway mobility got worse anyway showed my sister who is a doctor my beast and she was worried told me to get doctors appointment next day and she will come with me and I thought I would not get doctors appointment so quick due being Monday morning but yes I did 9.20 she did examination of my back and breast out down for referral for mri and breast clinic said it looked quite worrying held my hand my sister also brought up the fact I had lost weight and when I went toilet I didn't think I needed it thst much but passed alot so she was worried about spinal compression. I went home my friend came round few drinks got telephone call that I was getting admitted to hospital did I need ambulance but my friend dropped us off so my bloods were taken and painrelief given Tuesday I had mri ct scan and biopsy of the breast. By Wednesday I was told that I had breast stage four spread to majority bones I needed emergscny radiotherapy as I was risk of becoming paralysed.

    Fast forward to today I'm on lethrzole zoladex and currently low calcium so can't have the bone strengthening drug denaasaub or however you spell it got my ct results first ones on Wednesday. I suffer alot from pain due to pathological fracture which turned into crushed vertebrae cancer destroyed it apparently. Oh and I'm from England hey hey xxx







  • Proverbs312b
    Proverbs312b Member Posts: 2
    edited December 2019
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    Hi Malinda! I'm sorry that you are going thru this! There's no feeling quite like hopelessness.....I've been there. I can't take the cancer away but I do wish to encourage you as you go thru your journey, you don't have to go thru it alone! None of this is a surprise, even if it is to you. You have a Creator and Heavenly Father who loves you with an everlasting Love (Jeremiah 31:3) & has a purpose and a plan for all of this (Jeremiah 29:11). He promises to be with you thru it all (Joshua 1:9) & to give you His perfect peace if you trust Him (Isaiah 26:3). Malinda you can have hope for a glorious future here and beyond, if you put your trust in and believe in Jesus Christ! Please don't hesitate to reach out, I'd love to talk with you more, if you're interested.

    I have 3 children under 9 and I homeschool them, i was 1st diagnosed december 2015 at 36 while breast feeding my 5 month old, went thru 5 months of chemo, 2 surgeries: double mastectomy & ovaries removed, & 6 weeks of radiation, then daily letrozole until last month when I was told it spread to my lungs, liver, ribs, spine & pelvic. I'm disappointed it came back and am sad to think of missing being here to watch my kids grow up, but I know that this didn't happen by chance or that my life ended when I got my dx, in fact whenever I do take my last breath my life will continue in eternity where there will be no cancer, no tears, no violence, cold winters :) I long for that place & time, until then I try to enjoy this time with my family and friends. Please be encouraged Malinda!

    Hope to hear from you!

    With love,

    Jessica