Dear Newly Diagnosed Breast Cancer Patient

My friend, hold onto my hand. I have you firmly in my heart and in my thoughts. Thank you for reading. Thank you for reminding me why I keep up this blog. Yet I’m one of many who choose to write for therapeutic reasons and to share my feelings so people who look for help can find it in the form of shared experiences. There’s a group of strong women out here who will make a strong network in which we can support you and hold you. Once the feeling of confusing despair dissipates a little, everything will fall into some random combination of slow, blurry, painful, lonely, disturbing, isolating, uncomfortable, weird, surreal, and a host of emotions no one but you and this club you joined can understand – a club we joined unwittingly to which none of us wanted to belong.

Stage III certainly is a mouthful to say, let alone think about all weekend. Call them if they don’t call you. Be the best self patient advocate you can. There’s no one closer to you than yourself. Keep a pen and notebook with you at all times – next to your phone, your bed, in the car, in your purse. Take notes, write down questions that come up. But try hard not to get too deep in the web of info on the internet. You’ll have a hard time getting rest. No two people have exactly the same cancer as the next. Genetic, environmental, and other causes, but god the one things that didn’t cause it was you. You’ve not done anything to bring this on…

As for the first few months you’ll feel like no one is taking your situation seriously and you’ll push for immediate action although it’s very unlikely anything much will change – either in the progression of your cancer or with the medical treatment you’re receiving. You have a nurse navigator and use the NN to help you as much as he or she are able – questions, answers, appointments, notes from doctors appointments, find out what they can do for you and take full advantage. Monday isn’t too far away, but by then I’m sure you’ll have gone on the internet to see what the dependencies and prognosis look like. If you can at all help trying to dig until you hear from up your oncologist.

A small but very awkward discussion is a second opinion – after your oncologist goes over your pathology with you and initiates a line of treatment protocol, get a second opinion, as I wish I had done earlier in my journey. I did eventually and I’ve changed oncologists twice – I like my team at Stanford a lot and they’ve gotten me through the hardest health challenges.

I know it feels like the world collapsed and there you are standing in the midst of the apocalypse that’s destroyed everything in your past and future and nothing is known, you don’t know who’ll respond of your family if friends, and you cannot understand why yesterday was okay and today is really the farthest thing from okay you can even imagine. Helpless, unwell, sad, frustrated, alone, angry, distressed, full of doubt, overwhelmed by fear, uneducated…

It took almost six weeks from my initial hospitalization and diagnosis as stage IV metastatic breast cancer, HR+ (hormone receptor positive where the cancer feeds on my hormones; more estrogen than progesterone). I will let you read elsewhere if and when you want to in the blog about my initial diagnosis and subsequent treatments, although I bet they want to start you in some form of chemotherapeutic medication while you go through tests, CT scans, PET scans, genetic profiling, and…

It’s going to feel like too much to take in at once, and it is. Get a pen and a sturdy notebook out ASAP. I’m here for you and I can give you as much or as little of my personal experience to guide you. Listen to some podcasts to keep your mind occupied and stay in the know – personal ones like Thanks Cancer – there’s a link on my site – a podcast that two friends wish they’d had when they were going through each of their separate cancer journey. The stuff that’s about to come up in your life will make it seem like a dream. There’s Karin Seiger’s blog and podcasts. She’s an excellent resource of both calm and strength and is a licensed therapist with two breast cancer diagnoses of her own so she knows what it truly feels like, just as Mimi and Leanna the two aforementioned cancer friends.

But you’ll be okay no matter what the outcome. You will find a way to peace with your diagnosis eventually, could be sooner or later but you will. You’ll find parts of yourself you never knew existed, and you’ll grow emotionally, spiritually, and intellectually to heights you never thought you could. And no path is wrong, no steps incorrect because it’s your path and your feet and no one can walk in your shoes. Some women immerse themselves in family, kids, etc., some in exercise and nutrition, some in writing and reading, some in meditative practices, eastern medicine, yoga, Qigong, peer groups at a local cancer center, and a you’ll find your balance using a combination of some, everything, or none at all. Invariably however, you’ll be met with open arms wherever you go.

I read my husband your note with tears and said to him – this is the reason I keep my blog going. I need to focus on writing to her what I wish someone had written to me after my diagnosis. So this is the best that worked for my journey so far. And without going down too many confusing roads, I hope to have given you an asynchronous hug from here in California to your time zone – and I will not let you go it alone if I can help you at all, I will. Stay in touch, even if it’s just a once in a while single sentence because more pressure you don’t need. But, let me know how you are doing. Ask me about things you need a simple pointer towards and if I have answers I will give them, experience I will share it openly, referrals if I know one, and love unconditionally.

I’m not the only one out here. We all love each other in a sister and brotherhood of strength and support. Use Twitter and Facebook. Feel free to check my follows and followers on Twitter especially and there are two online groups – whatsnext.org and inspire.org – I have a listing of some links I’ve used in the blog, too.

Sorry for the delayed response; having not had a good health week culminating in todays fun stage 4 spectacular. And finally, keep your humor because it’ll keep you going in those very dark moments. You’ll have some now and then but laughter’s a medicine that no oncologist prescribes and you can get it over the counter for free. With cancer neither of those adjectives pervade the situation unless you seek them out and find them yourself. But there’s sunshine after the tears subside and remember that even though daylight hides the stars, the starlight is just on this side of night ready to shine even if you have to imagine they’re there.

❤️❤️❤️❤️❤️❤️❤️

Ilene

This was a letter to a reader of my blog, who’s also a virtual friend, in response to her personal email to me. I wish someone had written this letter to me when I was diagnosed in 2015. I felt alone, afraid, and as though things were happening in a time warp. I’d love to have your comments on what you’d add to the letter or what you’d like to have heard when you were first diagnosed.

6 thoughts on “Dear Newly Diagnosed Breast Cancer Patient

  1. Dear Ilene,
    Thank you for being You … kind, generous with your time and sharing your personal cancer journey with others. You continue to help me navigate through my metastatic cancer journey (began March 2016) through your writings.

    I think of your often. Sending caring thoughts.
    -Liesl

    1. update:
      I wish more people understood …
      – You did nothing wrong.
      – You are not alone.

      Ilene, Thank you!

    2. Leisl,
      It’s my obligation to share my experiences – and as long as I can write, I will. The gift is mine because your feedback as I’ve shared with you before generates creative flow and lifts me beyond any self criticism that may have kept me from publishing prior to cancer. Isn’t it ironic that it takes time to write and the career I once put all my time into didn’t allow for my creative endeavors. Yet it took all of me to improve the lives of women who came after I did in my profession in technology. I suppose it’s the same kind of drive, yet with a higher reward that leads me to risk my self worth. In that vein it’s what pushes me to strive to write as much of the emotional component that goes with metastatic disease as I can. Knowing it helps you to know you’re not alone and helps you in your journey is reward enough. And this is tough stuff to reread as I edit. Sometimes I cannot even bring myself back to a piece to edit because of the emotional component of personal experiences. That’s where the poetry takes over for the essay. It’s easier for me to edit metaphor than actualities.

      I hope you’re doing as well as possible and please let me know how you are. We are finally getting into the house by Friday of this week coming up. Meanwhile I finally got my appointment with one of the preeminent integrative oncologists in the world at UCSF and there’s nothing I look forward to other than getting settled into our new house more than that. I hope we can keep my husbands head above the depression line in all this change. It’s helped me stay well and it will not be good for me if he slips away again, not after so much joy.

      Sigh. One step forward. Hopefully not two back.

      Much love and I am so glad to hear from you!

    1. Thank you Abigail. I really appreciate your enthusiastic compliment.

      While reading through past comments over for a longer post to be published next week. stumbled onto this one and thought it could benefit a wider audience than one. It was actually helpful for me to reread.

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