Lorien’s Story – June, 2012

My youngest child was born in 2008 when I was 35. I have always been healthy. I don’t smoke, I eat decently, I exercise on the occasion and breast cancer doesn’t run in my family. When I was nursing my youngest son and kept having infections my doctor said it was mastitis, prescribed antibiotics and it cleared up. Then it came back. After the third time I noticed the spot that kept becoming infected didn’t totally heal up. Still nobody was concerned including me. Why would they be!? I was only 36. I was busy with my kids and like all mom’s with toddlers, I was severely sleep deprived so of course I was tired and not feeling my best. After I weaned my son it still wasn’t completely healed so I went to my doctor who sent me for a biopsy. I thought it seemed like a bit much, I just need some sleep and a heavy duty antibiotic, but I’m sure she had to cover all the bases.

Two days later the call came that I had breast cancer. I remember thinking okay, I can do this. A few months on chemo will be rough but I will just focus on the light at the end of the tunnel. Two extremely difficult weeks of tests later I found out there was no light at the end of the tunnel. Not for me. My cancer had already spread from the breast, to the lymph nodes and into my chest cavity, spine, sternum, ribs and collarbone. I was 36 years old with a 14 year old, a 5 year old and 18 month old baby at home and my doctor’s words were, “treatable but not curable”.

I’m coming up on my 2 year mark since diagnosis and life has taken on a new normal at my house. I take medication daily and once a month my husband and I drive 80 miles to Boston for an appointment with my oncologist and treatment at the Dana-Farber Cancer Institute. I’m fortunate that I have world class treatment available to me and that my cancer responds to hormone therapy. I’ve been able to put off chemotherapy for now but there are side effects and it’s hard knowing that I will need chemo eventually and some day even that won’t be enough. I get monthly lupron shots to put me into menopause so I’m dealing with the joys of menopause way too early.

The hardest part for me is not being able to be as active and involved as I used to be due to the side effects of the hormone therapies and zometa. I worry that I will die before my youngest son, who is now 3, is old enough to have memories of me and I try not to think about the fact that I will most likely see my oldest son graduate high school but odds are against me that I will be around to see the other two graduate.

My husband and I are struggling to find peace in all of this and each dealing with our own fears and worries along with trying to maintain a sense of normalcy in our house. It puts a lot of pressure on our marriage and has landed us in counseling. Being a Mom is hard enough but being a Mom with MBC is so much harder. Not only do I have to schedule my treatments and scans but I also need to worry about daycare for my youngest and who is taking my daughter to karate or my son to lacrosse practice and how my husband is going to do it all when I am not around anymore.

~ Lorien

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13 thoughts on “Lorien’s Story – June, 2012

  1. Hi Lorien, I too had my b.c. shortly after the birth of my child, she was 6 weeks old when I was dx, thankfully my b.c. had not spread and I could feel your fears in what you wrote about wanting to be there for your kids and how it affects you all as a family especially the couples. I was blessed and my daughter is now 22, I also was able to have another child 3 years after chemo. I will keep you and your family in prayer.Try books like you can heal your life by Louise L Hay to help show how to believe you can beat this ugly disease. Wishing you your family every happiness.

    • Thank you Kathy! There is something that feels so wrong, like a double whammy about being diagnosed while pregnant or with a young child. You are in the prime of “mommy hood” and focusing all your time and energy on your baby and then you are forced to go through a cancer diagnosis and treatment. I felt like I didn’t give my youngest the time and attention the other got because of it. Thankfully i’m responding well to Femera so I am making up for lost time!

  2. Lorien, I will begin to pray for you and your family. There is no easy way to wrap our hands around one of life’s hardest tests. As cliche as it sounds, you are in control of your interactions with your dear family, and ONE DAY AT A TIME, you can enjoy the gift of that day. Memories are shared between siblings, so there is no need to worry that your youngest will have memories of you. Your experiences with your other children will keep memories alive. Cancer robs a person of the misguided notion of control in their life, but it doesn’t rob them of the ability to show love to their family and friends. How blessed you are to have a loving husband to lean on, and letting him know how lucky you are to love him, can strengthen him in the days ahead. Your courage to post on this blog speaks volumes to your strength. Thank you for sharing your courage.

  3. im so sorry your on the path so many of us have found ourselves on. Im 7 months into this new journey and know full well what your feeling. My children are now adults, however i have grandchildren. They are as special to me as my children were. While im blessed that my children are adults im learning no matter what age we find ourselves at when this happens, its never good. I think you should stay focused on the fact that there are many women living long lives at stage 4. Why cant that be you? The other thing that helps me is that im blessed in having had children. So many are getting diagnosed stage 4, with not having that option. New treatments are coming around quite often, perhaps we will be really blessed and live to see a new treatment that gives us normal life span and treats this as a truly chronic disease.

  4. Thank you for sharing your story, Lorien. I was diagnosed with MBC two days after turning 29, so I can definitely relate to what you are saying about doctors sort of brushing you off – because who would think we had BC at such a young age. Then to hear the word, “incurable” – it’s just something that no one can understand unless they are in our shoes. I am sorry for all that you are going through and I can very much relate. The one thing I can’t relate with is your concerns with being a mother because I was not granted that blessing. I cannot imagine how difficult it is for you, but like Dawn said, you are very blessed to even have them. My husband and I were trying to get pregnant for months and then I was diagnosed and now I will never be able to have children of my own – and I am not sure that adoption will ever become a reality either. Although I am grateful I can spend the majority of my time caring for myself without worrying about raising children at the same time, not being able to be a mother is nearly as devastating as my diagnosis itself. I will definitely keep you in my prayers and please know there are others out there who are here for you. xoxox

  5. Dear Lorien,

    Thank you for sharing your story. It will help others who are also living with this disease.

    I, too, was Stage IV at diagnosis. I went through the same process you described of first thinking, “OK, I can beat this,” to “Oh, no. Now what do I do?” When I recovered from the shock it occurred to me that there are actually some good things about presenting at Stage IV. The first is that I never had to live with anxiety and fear about breast cancer coming back. It’s a devastating diagnosis at any stage, but all the really bad news was behind me, since it can’t get any worse than Stage IV. I was also naive on all the treatments, so the number of options open to me was at the maximum. Also, I didn’t have to have surgery, and all that that entails–no lymphedema, no scar tissue, no body image issues. (If I thought it would help I would risk all those things, but at the moment the jury is still out on whether it’s helpful, so I haven’t done it.)

    Cancer has changed me, and mostly for the better. (Cancer itself is not a good thing, and I live for the day that it is conquered.) I do a better job of not sweating the small stuff than ever before, and I can honestly say I’ve had more moments of pure unalloyed joy and gratitude in the year since I was diagnosed than in any other year of my life.

    It’s a club nobody wants to join, but there are some benefits to membership. I have met some wonderful people who would not be in my life except for this illness. I have learned to plan in different timelines. I am coming to terms with my mortality, and that is making me live more mindfully and even joyfully. There’s something about knowing it’s not going to go on forever that makes it so much sweeter.

    If you can arrange to have your treatment day fall on Mondays, then you’d be welcome to come to the Stage IV breast cancer support group at Beth Israel Deaconess. It’s open to anyone, and there’s no charge. It meets from 11:30 to 1:00 every Monday (except holidays) on the 9th floor, in Hester Hill’s office. BIDMC is about a half block away from Dana-Farber.

    Hang in there, Lorien. You are not alone.

  6. Lorien –
    Just wanted to let you know that you are not alone. After reading your story, I could relate at every level. I am one year since diagnosis and I too have 2 small children (6 and 4) and feel so sad that this disease could easily prevent me from being around for some of the most important milestones in their lives (HS graduation, marriage, grandchildren, etc). I’m also sad for my husband, who envisioned raising our kids and living out the rest of our lives together. All this has changed.

    I, too, have changed. I find that I don’t get all caught up in matters that bothered me before. I take much better care of myself and my family, and spend a lot less time worrying about other people and what they think.
    I haven’t adjusted to this new “normal” everyone keeps talking about. Thankfully right now, I don’t “feel” like I have cancer, so when I find myself at my Oncologist’s office or getting my scans, it’s kinda like a bad dream – only I’m not sleeping..I’m awake…and it’s real…unfortunately.

    As someone who has always planned for the future and strived to achieve goals, I’m still struggling with that piece of it. I think that is one thing cancer has taken away from me…my confidence and ability to plan for the future. So instead, I live for each day and the farthest I can plan into my “future” is about 1 year.
    Although I wish I didn’t have to be online reading your story (and those of so many more), know that I’m here too, living a very similar life to yours, dealing with the demons, and trying not to fear the future, but to face it. I hold onto hope, praying that more options become available to us.

    Hugs,
    Lorri

    • Lorri, I’m a planner too and one of the hardest parts for me is not being able to envision their proms, graduations, marriages, etc. When I find myself thinking about things like that I often end up in tears because I want to be there and I’m so scared I won’t be. I want my grandchildren, I want to see my daughter in her prom dress and help her pick a wedding gown. I want the condo in Florida that my husband and I always planned for after retirement. Instead we focus on a 6 month-1 year out and I try not to think beyond that.

      I know what you mean about not feeling like you have cancer. I’ve never had surgery, chemo, radiation, etc. I have my hair, I have fatigue but not the crushing fatigue that other women on chemo talk about. I don’t even have pain other than the joint/arthritis pain that I have from the Femera. The worst part is knowing that the future holds chemo, pain, hair loss, and eventually having to sit down and have “that talk” with my children. I pray every day that they will be adults by then!

  7. Only love and prayers for you. So sorry this is happening to you and your family. I know I can speak for all to say we love you and will be here for you anytime. I had cancer but it was not b.c. However the nightmares are still there to live through, no matter what kind. There is a plethora of loving gals here and I do wish you warm and loving thoughts. Susanne

  8. Lorien – I can so relate to your struggles and worries with having MBC while parenting young children. I have a 10 yr old and 7 yr old and was diagnosed with mets in late 2010, about 3.5 yrs after my Stage 3 dx. I’ve done my best to keep their lives as “normal” as possible with a few concessions due to doctor appts, fatigue, and pain, but I begin chemo soon after having used up all the hormonal txs and I know I won’t be able to be the mommy I would like to be anymore. It’s hard not to feel a bit guilty, especially for my youngest whose never had a healthy mommy. I try to do my best day by day while hoping for better treatments down the line. I hope we both get to see our youngest become adults. Hugs and Best Wishes.

  9. Dear Lorien—-my heart goes out to you! My daughter was diagnosed with stage 4 breast cancer 3 weeks ago. She has 2 boys 10 and 13. I had breast cancer stage 1 8 years ago. My oncologist told me when I asked if I could die with stage 1 ” I have seen patients with stage 1 die within a year and women with stage 4 live 10 to 15 years. IT IS NOT OVER FOR YOU . There’s not one person on Earth —-who has any more than this very moment. You have the luxury of constantly monitored treatment. 90% of your healing will be in your mind not in your body!!!!!! Get in there and start fighting like a girl !!!!!!!!!!!!!!!!!!

    • Sue Diehl, your post was so empowering. I’m so behind as I am knew nothing about MBC until one of the most important people in my life was diagnosed. It’s the fight of one’s life, and MBC has quite a reputation but WE must put on our armor and go for broke. I’m seeing that more can be done in the area of research and public awareness. There’s no way I should just be learning about MBC.

      Lorien…you’re a woman and you’re made to overcome with ease–near death experiences like childbirth. You have it in you! Go HARD! Hugs and tears lady and stay strong!

  10. I am 27 years old and I do not have Metastatic Breast Cancer, my mother does. She is 61 and was just celebrating 6 years from her initial breast cancer diagnosis. Although I do not physically have this disease, I am living with it mentally and emotionally every day. I never knew what MBC was until my mother was diagnosed with it. My mother has raised her children and met her grandchildren. Your stories are inspiring to me and I feel as though I can relate because I never imagined my young children growing up and not having memories of my mother. This has been consuming my life – I am a primary caretaker of my mother and therefore I have had to lug my children around to chemotherapy and radiation treatments, Diagnostic centers, appointments, pharmacies, etc. How do you manage life with children and still finding time for treatment? How long into your treatments did you start to feel better or notice some form of healing? My mother is taking Navelbine and Herceptin for Chemotherapy, once a week and has completed 16 radiation treatments to date. Her pain is what seems incurable, as when she receives the navelbine, the chemo room mimics that of a labor and delivery room in an all natural birth. Her metastasis is to her lungs, chest wall, and lymph nodes. We are keeping hope and “plowing through” but any insight on when the positive effects of treatments will start kicking in would be wonderful to hear. I know everyone responds differently to treatment I’m just desperate for a little insight.

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