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.

Death and the Paradox of Happiness

Recently reblogged as a follow on to Karin Sieger’s (karinsieger.com) moving and deeply honest discussion to losing a dear friend to metastatic breast cancer, was my post on hope even in times of grieving. Integrative Hope, a post I wrote back in February, touched on losing my best friend to AIDS at the age of 37 and to my father’s death as a result of a large mitochondrial brain tumor in 2013. When faced with the issues surrounding my own terminal illness and my attitude towards death, I noticed that even on such deep and weighty subjects my philosophy emotionally matured. Perhaps the processing of my evolving attitude towards death and dying came to me more quickly having been diagnosed with a currently incurable disease.

I believe this is in no small part how honest I’ve become inwardly with myself in facing the ultimate of uncertainties, what happens when we die?

I’ve had the honor of being by the side of my best friend and my father and my perspectives on death and dying were strengthened by these two life altering experiences. My mourning wasn’t so much a sad experience as it was a humbling one. Oh, I did cry for the loss of each of them in my life and occasionally still do. But I also laugh, smile, and feel lucky to have had them in my life for the time they were here. While thinking of them now during specific times of the year, hearing songs we shared a love for, or that especially reminds me of either of them, the scents and tastes of favorite foods or restaurants, or an experience in places we’ve visited together. Immediately, dear memories bring them both rushing back to my side as though they’d never died. They’re integrated into my soul in so many ways.

Time also heals and bends our perspectives. The mind protects itself by recalling happy experiences over sad ones. I think of my divorce to my first husband. It’s not the fights I recall but the great times we had, the places we traveled, and the wonderful ways in which he enriched my life. Divorce is a kind of death, too. As for those who I can no longer contact because I’ve lost them to diseases, my life in a sense extends their own, although neither is still alive. I’m grateful to have all of them integrated as part of what makes me, ‘me.’ I only hope when I die that there will be as positive an experience for the people I love in this life.

Unlike divorce, where we know what happens when a marriage dies, we just don’t know what happens when we die; the great mystery I believe humanizes all of us and is the only thing on which everyone can universally agree. No one can buy this knowledge either: what happens to all that energy we create while we are alive after our physical bodies have ceased living?

The paradox of happiness

I do believe this philosophical issue makes me more resilient in my own terminal illness and helps me survive with my disease: I’m not carrying any fear of dying. I focus instead on living. For instance, I’ve found peace and happiness where we recently moved and these feelings drive me to want to stay alive. The photo attached to this post is the view in our new home and where I will write my blogs and start writing my book. I want to live longer to see what a true state of happiness feels like. It frightens me to think it may change my philosophy of the dying process.

Therein lies the paradox. I’m grappling with this existential question now and some days it makes me quite angry and sad, which to me is counter intuitive. But that’s okay. It’s all a learning process. I suppose that’s one of the many beliefs as to why we are alive in the first place.

Well must attend to the rolling blackout here in California where the electric utility has determined its bankruptcy allows them to endanger people who need electricity to run medical devices or have air filters or heat on. Fortunately once we move to our new house we will have a generator that switches on and we are converting to solar in the next 3-6 months so as not to rely on such a horrible service. In fact it’s so costly some families have lost their homes or even their children to social services as a result of not being financially able to pay for their over expensive power bills. You legally must have power on to live inside. But bills can exceed $2000 a month and not for mansions, either.

Such a morbidly sad and strange time to live in. Yet all the same it’s still wondrous to wake up every morning with the opportunity to be grateful for another day.

Even if the powers gone out.

Metastatic Cancer Awareness Day: 114 more will die

In the United States, 40,000 adults died last year from a particularly horrible terminal illness. The same critical disease queues up approximately 155,000 into a lemming line and eventually fall inside our graves. Remarkably, exact statistics aren’t available to understand how many people died as a result of metastatic breast cancer (MBC). Many of us lemmings in line, we’re not counted in the statistical data. For instance if you’re diagnosed this year with any stage of primary breast cancer for illustration purposes say 15 years later you’re one of the 30-40% who will eventually be diagnosed with MBC, you’re not counted in that number because you’ve already been put into the pool when first diagnosed with stage 0 and I-III.

Furthermore, if you’re “lucky” and you survive MBC more than five years and we’re diagnosed de novo (from the start) then there’s no formal tracking at least not in the United States. I suppose it’s not as interesting since it would sound less sensational to the pharmaceutical companies to track 15% give or take. Not many of us live five years beyond diagnosis – the majority die in an average two and a half years.

You bet I’m glad that we had one day. Wow! For those 30% who will find themselves diagnosed with MBC – the vocal metsers or metavivors have an entire day to explain what stage four metastatic breast cancer really means. To try to define the extent of collateral damage to our lives. To leave women (and men) with a better understanding of just what it means to live with an incurable disease. To hear these phrases over and over, “but you look great!” or the ever popular “you don’t look like your have cancer.” To have people who were once close you actually not believe your diagnosis. For family believe you’re actually lying about having MBC since you simply look too good to have any disease at all.

Just a lazy, early retried, government money sucker. I wish. No, I don’t wish. I do wish I were not laden with dense breast. The tissue in my fun bags is indistinguishable from the blood sucking cancerous tumors that started whittling down my life to a stump nearly five years ago. The years when the discussion was about indeterminate mammogram and ultrasound results. The years just before 3-D mammography might have saved my life. If you so happen to have dense breasts like I do, insist on more diagnostics and a physician who’s better at reading radiological results than the abilities of an average technician or your general practitioner. I wish I’d known more then. But wishes don’t often translate to reality once the blade has come down in the guillotine. My tumors weren’t large and still have no lymph node inclusion. It wasn’t law yet to notify women of their breast density. According to areyoudense.org

Adding more sensitive tests to mammography significantly increases detection of invasive cancers that are small and node negative.

I wish either sociopathy or borderline personality disorder were my diagnosis instead of invasive ductile carcinoma with osseous metastasis to the bones, liver metastasis, multiple periocentesis to drain asceites fluid buildup from my abdomen, and a nice size tumor that pressed on my duodenum and would not allow any food to pass from my stomach to my small intestines. My body is an amusement park for cancer, an e -ticket ride at one of the many Disney theme parks. This one is Cancer Land where the characters aren’t cute and they come home with you for the rest of your life.

I’m on my third line of therapy. Xeloda in 2015, Ibrance and Fulvestrant in 2018 and currently, and Taxol in late 2018 and the first six months of 2019. There’s still lots that I can do. I also take charge of my own health and my oncology teams. I’ve moved to a less stressful more peaceful place. But I’m lucky as I know many women do not have some of the resources of a partner as I do. But if you take one message from my day late post, insist on the right level of detection for you even if you are unlucky enough to wind up with a cancer diagnosis. It may save your life.

No poem this week. I’m a little down and I’m going to pick myself up as I have done every day by drawing. I’ve been Zentangling on every piece of paper I can find. It calms me and I keep my mind really busy when I need to – I highly recommended it. I couldn’t draw, either. But I can now. It’s amazing what we can do if we put our minds to it.