My Diagnosis

Sunday, January 21, 2018



Cancer
Cancer
Cancer
Cancer!

There, I've said it.
It's taken me a while to accept, but I have cancer.

It started last summer with some a few swollen lymph-nodes on my neck.  I went to the doctor, but without other symptoms he wasn't concerned.
However in the fall I had some blood-work done (gyn issues) and my white blood cell count came back super high. Combine this with the swollen nodes, and there was concern.
After several CT scans and gallons of blood drawn, I finally got my diagnosis a few weeks ago.  I have something called CLL, Chronic Lymphotic Leukemia, a type of cancer that starts in the bone marrow but then goes to the blood.  It's rare--1 in 175 people .57%.  My disease is not aggressive thank goodness, but it will need to be monitored carefully.

There's a strange feeling you get when diagnosed with cancer.  It's like someone hit you over the head with a baseball bat---there's an element of surprise, shock and then pain. Next the questions and uncertainty kick in.
I've been so healthy--how could I have cancer?
Why me?
What's this going to mean for my future?
How will I live my life?
How long will I live?
How will my family deal with this?
What will my life look like?
Will I need chemo? Will I lose my hair?
And don't laugh...if I die will people think I'm a shopaholic when they see my closets of clothes? 
I'm a worrier, so you can only imagine the strange places my mind goes!

However there is some light here. As my doctor said, if you're going to get cancer CLL is not the worst one to get. Although it's not curable, it's treatable. And treatment would not take place until I become very symptomatic....this could be years away. No one knows.  For now, it's watch and wait.

After the immediate shock, I felt a sense of control. At least I know what I'm dealing with---there's a name for my illness and a course of action.  There are also things that I can do to strengthen my compromised immune system, like eating well (seeing a wholistic doctor for nutrition counseling next month), taking yoga classes, meditating, and creating a better work/life balance.  I'm a big-time worry wart, so a plan makes me feel better.  Tomorrow I am seeing a specialist at Mass General. I'll also feel better with more information and a team of doctors in place.

For now, I need to figure out how to live life to its fullest without dwelling on the negative. I don't want this disease to define me, but I can't deny that it's a reality either. Any advice?

Life is so strange. One day you're healthy, the next day you're not.  There's no crystal ball...it is what it is. I have cancer. Yikes. 








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68 comments

  1. I have admired you as I follow you on Instagram. I have been in awe of the work you do with ladies who need a little boost of self confidence. I will pray for you. You have done much for strangers. Allow one to commit to pray for you.

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    1. Oh Christa -you are so sweet. Thank you from the bottom of my heart xo Susan

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  3. My best friend is going in to Mass. General tomorrow morning for surgery. Her diagnosis of a malignancy in her thyroid is as positive as it can be. The doctor says it's very treatable. I keep you and Lisa in my prayers... prayers for strength, prayers for hope... and prayers for peace of mind. Sending you much love! PS: Lisa and I love clothes, too

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    1. Thank you Ellen and I'll be thinking of Lisa! We'll both be under very good care...Mass Gen is amazing. XO Susan

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  4. Oh Susan, what a shock this must have been. I'm glad to hear it's not an aggressive form. It's good to know what you're dealing with at least. I'll be holding a good thought, and hope the diet/lifestyle approaches are effective in keeping it at bay.

    I had thyroid cancer over a decade ago (caught early, fortunately, and treatable). But it was a reminder that we can't take good health for granted.

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  5. Sending love and light your way as you transition into this next part of your journey. I have a chronic illness as well and while it has been life-changing, there is much opportunity for growth and wisdom through it. Let's keep being fabulous while we travel!

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  6. I was diagnosed with CLL two years ago. I'm on"Watch and Wait" and see my oncologist every 3 months. So far my numbers are stable. Just feel fatigued, some days more than others. I don't know of anyone else locally who has this disease, and am looking for some sort of a support group. For now I just take it one day at a time.

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    1. Heather, please email me. I'd love to keep in touch. I didn't find any groups in my area either. Maybe we could compare notes via email? The weird things is that one of my close friends has it too...she is also a social worker and we've worked together on numerous occasions. Hmmmm... susan@agreatnewlook.com

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  7. I know all too well how a diagnosis of cancer will the world as you know it upside down. And like you, I was told that if you have to have cancer, yours is a better one to have (small comfort in that). Fortunately, you've got a plan and the means to pursue it. Life changing does not mean life ending, just a change in direction. I hope that your journey on this new path is a long one and full of new adventures.

    Rena
    www.finewhateverblog.com

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    1. Thank you for sharing Rene. I love what you said. Just another change of direction. Please keep in touch XO Susan

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  8. Xanax, get some xanax. And, if you cannot sleep, try Lunesta :)

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  9. Susan - Sending good thoughts and strength your way. I know you’ll get through this with your usual grace and style and the support of your wonderful friends and family. Let people help and support you, even though it doesn’t come naturally. Keeping you in my thoughts. - Andrea

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  10. Wow Susan. What killer news, but I can tell you have the best perspective about it. Like one commercial I saw once, "I have cancer, but cancer doesn't have me"
    Sending tons of love and prayers your way!!
    XOXO
    Jodie
    www.jtouchofstyle.com

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  11. First of all, a big hug to you! Allow yourself to go through all the emotions you are experiencing, than BREATHE. One day at a time, one step at a time. You've got this, praying for your complete recovery!

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    1. One day at a time...that's all any of us can ask for! Thank you XO

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  12. I cannot offer you any advice. Your post was shocking. Although I am healthy at the moment (for as far as I know), this could indeed happen to anyone. You wrote this post so well. It was as if you spoke to me. I wish I knew how to help or consol you, but I don’t. Don’t think anyone can. You have the best attitude and that will help you the best. Love
    Greetje

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    1. You are so sweet Greetje, thank you for the kind words. I'll get through this just like everything else in my life (I could write a book). One more challenge to be managed.
      Thanks again XOXO

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  13. Dear Susan, wish you all the best, a recovery and a long life.

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  14. Susan, I'm so sorry for your news. Watchful waiting can be very stressful.

    A suggestion: find an advocate who will go to every appointment with you and take lots of notes. Start a binder and record everything -- your advocate's notes, your test results, brochures from the oncologist, your thoughts, current symptoms and questions for the next appointment. You'll have a gazillion questions along the way and many of the answers will be in the binder. When it's time for the next appointment, you'll have a record of questions to ask and symptoms to report -- including things you might not have thought about for a month or two. I am an advocate for a cancer-patient friend and we find the binder extremely helpful.

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  15. Susan, I feel your angst and pain. I was dealt a medical issue with my brain 15 years ago and have been dealing with it every day since. I won’t elaborate here but since I’m not far from you, I’d like to be there for you as a listener.

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    1. Oh Dee I'm sorry you've been dealing with a medical issue too. Let's get together for coffee sometime soon. Thank you for sharing XO

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  16. Susan I am so sorry to hear about this. I know you are strong, like so many of us women and will find a way to get through this. I wish you all the best and lots of hugs.
    Nora

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  17. I'm so sorry to hear this news. I will keep you in my prayers.

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  18. Oh Susan, I am so sorry...
    Keeping you in my thoughts and prayers.

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    1. Thank you Darlene....geez why does life have to be so complicated? XO Susan

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  19. Susan, I am so sorry to hear this. Over the years wether you know it or not, you have been my role model. I look up to you and how you handle life. You have the ability to make everything and everyone look and feel beautiful with grace and dignity. Cancer sucks but I am sure if there is a way to make cancer look good, you will be the one that does it. You are amazing and whatever or why ever this is happening to you there must be a greater reason with some goodness that has to come from this that we just don't know yet. Stay strong <3

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    1. Kathy, I'm reading this crying. You are amazing. Thank you. This is not going to hold me back. Onward :) XOXO

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  20. Susan,
    I am so sorry to hear this news about you!
    You are someone I genuinely enjoy following and I know you have a very large group who will support you on your new journey.
    I shall pray for you and give you encouragement when you reach out for it.

    Forever your fierce sister,
    Robin

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    1. Oh thank you so much Robin. I truly appreciate the support. What an amazing community of women I'm surrounded by. XOXOXOXO Susan

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  21. Oh my goodness, I am so sorry for what you are going through and praying for a complete and speedy recovery. I went through something similar when I got a diagnosis for my 8 year old son several years ago, and I kept thinking, "this has to be a mistake, he is much too lively for this" and there was a series of emotions I went through. What became my strength was knowledge- information- also a few close friends and my spouse, and the cardiologist. He had a real down to earth approach, and that gave me wisdom on how to proceed. I am praying for you, thank you for sharing this.

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    1. Thank YOU for sharing! I can't even imagine getting that type of news for a child. SO hard. I found a fabulous doctor in Boston and feel a whole lot better. XOXO Susan

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  22. I got my diagnosis April 7, 2017. Uterine cancer. All of the exact same questions went through my head. I am someone who likes control. This was something I couldn't control. It took a good 24 hrs to wrap my head around it. What I want to tell you is this; cancer messes with your mind as much as it does with your body. Write affirmations to yourself and try to stay positive. It goes a long way towards your overall health. Rest, relax when you can. Make yourself your priority. Easier said than done, but you have to have strength to fight. Read and understand as much as you can about your cancer. That helps you in the fight. Prayers and good vibes to you.

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    1. All good advice and I hope you're doing well. XOXOXO

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  23. Oddly enough I found you through Shauna Robertson’s Chic over fifty social media...just following her through her stay at New York fashion week. I’m sorry to hear your diagnosis, and I’m sure you’ll hear all kinds of feedback. Listen with compassion(people mean well). LISTEN to your Dr. (no brainer). Don’t dwell on “I am healthy, how could this happen”, healthy people get sick. And most of all, so very important to us worry warts...DO NOT let your imagination go awry. When you go to that “place” that thinks the worst, make sure you
    stop and separate fact from fiction. I know it’s easy for people not faced with health challenges to say. But there again we mean well. It seems we’ve come to a point now in the medical community, where Drs now have to teach patients how to live with cancer instead of teaching them how to die of the disease. And that is a very good thing. God speed and prayers to you and your family

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    1. Hi Cheryl! First of all, I'm so glad you found me :) Wonderful to "meet you".
      And yes, you're right---so right. I have to stay away from the "worst". I come from a long line of worriers, so it's in me. Time to change the tune. Thank you XOXO

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  24. I have been following your blog for quite a while now. You do so much for others, take time and take care of yourself. I will be praying for you. I can tell you are a strong person and you will beat this!

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    1. Awe thank you so much Dawn. Learning that I HAVE to practice what I preach...self-care! OXXO

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  25. Susan, I admire you so much for not only starting such a wonderful business that is all about giving back, but for how you are handling your diagnosis. I'm sure you have had your horrible moments and thoughts, as I am a worrier too, but your strength and positive outlook you have shown in this post is to be applauded. You are staring cancer down. I love the attitude you have taken. I have never personally met you, but I feel as if I have. II want you to know that you are in my thoughts and prayers, and I'm here cheering you on! XOXO

    cherie
    STYLE NUDGE

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    1. Thank you so much Cherie. Hope to meet one day. There's something so special about "blogger" friendships. XOXOXO

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  26. I'm so sorry. My 82 year old mother has just been diagnosed too with a chronic rare form that only 200 are diagnosed in the UK get a year. She said to the consultant you should be lucky to have me as a patient then. It maybe that she's had it 12 years with no symptoms. It was discovered as her immunity is starting to fail now and that means immediate intravenous antibiotics if she gets a cold etc. I thought you may be interested in her journey so rambled on there.

    http://www.muttonstyle.com

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    1. Thank you for sharing. I hope that she does well. 82 is young these days :)
      XOXO

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  27. Sorry to hear this Susan! I will keep you in my prayers. There is so much hope these days with this dreaded disease ... the advances in medicjnd are great ! I know you will overcome and beat this!

    I hear you on health at midlife .. I just found out I may need surgery on my rotator cuff and I worry blog will go down the tube for several months :/

    Keep your chin up !

    Xo

    Valerie
    Www.mapleleopard.com

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    1. Thanks so much Valerie and best of luck with your surgery. My 80 year old aunt had it (she tore it playing tennis) so I know you'll be fine. You can blog about clothes that are easy on/off for a bit :) XOXOXO

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  28. Hi Susan, I read your post on FB and I am sorry to hear this. You have a positive attitude, and I do think that is so important in health, Good to hear it is not the aggressive type. I will keep you in my prayers. Hugs to you
    jess xx
    www.elegantlydressedandstylish.com

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    1. Thank you so much Jess...I truly appreciate your kindness xoxox

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  29. First off, your humor—wondering what people will think of your closet—underlies your strength. I had breast cancer about 15 years ago, when I was 43. The biggest mistake I made was being strong on the outside, without dealing with it on the inside. When all my treatment was done, I fell apart. You’re doing great—talking about it, being candid about your journey through it. Everything is going to be okay, you might just need to work on some new tools—like controlling when our crazy minds take us where we shouldn’t go—haha! 15 years later, my cancer diagnosis brought on a whole new me, taking me to new highs I know wouldn’t have happened without my struggle. Message me if ever you want to talk. ❤️��

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    1. Thank you so much Dawn! So glad you're 15 years out from having cancer. It's crazy how many people are affected....what's going on? XOXO Susan

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  30. Such a beautiful post, Susan. I so admire your strength and spirit ... and how proactive are you being about taking care of yourself. It's a powerful reminder that none of us knows what's around the corner and self-care has to be a priority. Adore you and can't wait to meet you some day soon and give you the biggest hug!

    OXOX
    Dawn Lucy
    https://fashionshouldbefun.com

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    1. Thank you my sweet and special friend XOXO Susan

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  31. Oh, Susan, I am so sorry to hear this. You are so correct about how quickly things in our lives can change and change so dramatically. But I love your attitude and your perspective. And I am certain that you will be surrounded by so much love and support from your family and friends. And this blogging community is going to generate so much positive energy to send your way that you will shine brighter than ever throughout your cancer journey...which will just be one chapter in your amazing and brilliant existence!

    I will continue to keep you in my thoughts and prayers.

    Many hugs to you, my friend.

    Shelbee
    www.shelbeeontheedge.com

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    1. Thank you so much Shelbee...you're a love. Never a dull moment right? XOXO Susan

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  32. Just found your blog today through Catherine Grace O'Connell's Facebook page. I was diagnosed with an incurable cancer in the fall of 2013. So far, treatment has been successful at keeping it stable and I'm able to live a fairly normal and active life. I remember the early days, however, when I asked all the same questions that you're asking. There really are no answers to many of them, but I have found that keeping active, eating well, and having a positive attitude make a huge difference. My faith also plays an enormous part in keeping me from giving in to fear. Pamela's advice about having a binder is excellent! Shortly after my diagnosis someone made a similar suggestion which led me to purchase a coil notebook with several sections in it. The section dividers are pockets which allow me to store vital bits and pieces like lists of my current medications, past surgeries, etc. I take it to every appointment with me and it has been a huge help in keeping track of everything. Before each appointment, I write down any questions I want to ask to ensure that I remember them. It also helps a lot if you have someone who can go to appointments with you. Two brains are better than one, especially when one is dealing with the stress of cancer. I wish you well on your journey!

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    1. Thank you Elaine...I'm so sorry about your own illness. I did get a notebook! Great idea!
      Stay well. XOXO Susan

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  33. Hi Susan, I saw your post on Facebook. So sorry to hear your diagnosis, what a shock to deal with. Sending you my very best wishes xxx

    Emma
    www.style-splash.com

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  34. Check out a couple blogs chrisbeatcancer.com and, thetruthaboutcancer.com There is much hope! If you get the series of DVD's at thetruthaboutcancer.com you will learn a tremendous amount. I love chrisbeatcancer.com He interviews survivors often. Too, he shares his journey in healing colon cancer.

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    1. Personally, I would be very cautious about sites like these ones. There is so much false information in circulation. I would advise speaking to your cancer care professionals and asking them which sites they recommend.

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  35. Elaine, I have seen first hand the power of nutrition. That is what these sites are about.
    People are healing from cancer! There isn't anything that is harmful about sound nutrition.
    Doctors aren't taught nutrition. Doctors are taught to prescribe drugs. Our bodies do poorly when we are deficient in nutrients. Our standard american diet is full of chemicals, additives, and, preservatives. It is full of fat and, empty calories yet, depleted of nutrients. These sites are a testament to what sound nutrition will do for a deficient body.

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