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.

My Cancer Philosophy

Cancer doesn’t mean I’m broken or did anything to deserve it. It means nothing to me, actually.

And Karmic retribution isn’t something a person “deserves.”’I believe Karma represents an unclear conscience of one who’s so busy looking over their shoulder at what’s behind them, they therefore trip over what’s right in front of them. Karma doesn’t discern between either bad – falling flat on one’s face – or good – missing out on all the love and beauty that’s available in this world.

I know cancer will eventually kill me. But it won’t have made me a better or stronger person. Having a diagnosis of a terminal illness actually forced me to see the person who I always was. It’s through shear force of my own will that I gather together the very best of the essence of myself. And with that will for as long as I’m alive I’ll heal myself as best I can but not beat myself down when I cannot. Gratitude comes then through my healing in that I can help others.

Writing my experiences as plainly and as real as possible allows others to see my cobbled path and how I navigate the bumpy road ahead. In seeing what I could not see until I’ve passed those tests doesn’t mean that they’re cheating on their own but rather can provide a guide for making their road a bit smoother so they trip less often than I have. Why let anyone’s life be more difficult if it’s as simple as that. If my story is valuable enough to be shared in by others then I have an obligation to tell it as well as I can for as long as I can.

My strength wanes and waxes as my cancer does as well. If you’ve heard this quote as relating to metastatic cancer, there’s nothing said in my opinion that’s more accurate: “living with uncertainty.” Uncertainty paints a picture of my life before cancer. It’s not any different now, so my strength from my experience in dealing with change and not knowing what the future looks like, well equips me to handle this disease.

It’s called resilience.

When the gift of each new day comes in shining through my window I am grateful for the time I can pet my cat. Or hug my best friend. Or even mop the kitchen floor. I can sing while I mop. I can hear my cat purring. I can feel the love of my partner returned to me each time we embrace. And some days that’s maybe all that I can find to seek happiness within – but that’s a lot.

In fact it’s more than I can ask for because it means I have a roof over my head, clean water to mop the house with, enough money to have a loving cat as a constant companion, and love in my life that goes beyond just the requisite. I’m fortunate and richly rewarded by life in so many ways that description of these gifts seems lackluster upon review. Yet even for me, a chatterbox since birth, realizes that some things are so much bigger than me they evade my ability to describe them.

It’s true that certain famous (and not so well known) quotes by others can describe feelings and ideas far better than I. Yet certain universal ideas find their way into everyone’s mind sooner or later. Yet these ideas are informed by experience and influenced by authorities we respect, such as religion or poetry or science. Usually it’s a combination of things that create our personal philosophies.

For instance, a white supremacist believes they’re right to impose their thinking on people not like themselves. They impose their deeply held beliefs that certain religions, races, and ideologies should not be proliferated but stopped by their own hand. I won’t even kill a spider in my house. She has a right to be here as I do. And I’m not saying that if the white supremacist were in my house I wouldn’t put him out like the spider.

Here’s the three philosophical statements that describe where I’m at today. Yet my emotions change, sometimes on a daily basis, yet it’s stormy as it may have been in the past but a more gentle breeze that changes my weather. Cancer has this effect on me:
1. Forgive, and if I cannot forgive, forget.
2. Love is all that matters – in all life and the universe.
3. Death is the natural path of all life; I face my own death with curiosity and grace.

And just as that equalizing common denominator of life is death, the most curoius thing about it is not one of us truly knows what mystery lies beyond this reality or how many realities there are. We tend as a culture in the United States anyway, to dismiss alternate realities as we tend to dismiss death. We don’t discuss it much. People do love to talk though. Hearing someone say that cancer is some kind of Karma is not only ignorabt but dissmissive of alternate ways of being. By doing so we miss learning lessons about living life with grace in the face of our own deaths. Especially those with a stage four cancer diagnosis. It never leaves our bodies and turns our bodies into a machine with an invisible timer set for detonation at an unknown future time. Kind of like not having a stage four cancer disgnosis at least, well…philosophically.

And I know if you’re reading this post you probably will agree that no one deserves cancer. Not me not anyone and not anymore.

Closure: death and forgiveness

None of us thought we’d die before our “time.” I think it means our presupposed allotted lifetime into old age, perhaps our 70s or 80s. Seeing grandchildren grow. Watching as our bodies change with age, seeing our partners creases form around the same eyes into which we’re used to gazing. Death from stage four cancer didn’t occur to me as my ultimate decider. It did erased the path to the future I’d laid out in front of me. After diagnosis I could find no place to land my next footstep.

I miss my parents these days. The path I’m on no longer leads home to them, either. Their presence represented home for me, which I only realized after they died. No longer could a path carry them back to me, either. The warmth of parental love would be welcomed. That love a parent usually feels for a child no matter what age or stage in their relationship. Death ends an irreplaceable bond and the only unconditional love most humans will ever know. So different from the lives we chose.

A parent’s love, unchosen by us, although m not always healthy but biologically necessary in childhood, becomes evident at some point in our adult lives. Hopefully we work out any resentment or negative emotional turmoil and reach a mature understanding of one another before they die or as in my mother’s case, before memory becomes only the child’s to remember, as the parent may no longer recognize heir own. Perhaps in some way Alzheimer’s and dementia take down the open door and board up the portal to the past leaving nowhere to find our common experiences.

My mother died from Alzheimer’s just before her 74th birthday. Too young for my family, and too soon for me. Money somehow takes over the priorities in many families. My family exhibited no exception in behavior. My younger brother kept me from finding out about my mother’s death. My ex husband sent me his condolences but too late to travel to arrive in Florida from California in time for her service. She wanted to be cremated, and many times in my life had me swear I’d not bury her. Mom was terribly afraid of being buried. My brother and my mother’s sister tried to stop her burial after a text message from me alerting them to her wishes. However, it was too late and the cemetery had already embalmed her. The embalming process made cremation no longer an option.

There’s a bond between a first born daughter and a mother. At least that’s what mom told me. Do you ever hear yourself speaking your mother’s words or her idiosyncratic phrases sometimes? I know I think to myself, “god, I sounded just like Elaine!” And I look like both of my parents. There’s no doubt a genetic blender swirled them together to create me. But they had very different deaths.

As different as their lives.

The strong relationship between my father and I went through its share of turmoil and warmth. We were much more alike intellectually and culturally. He handed me Kurt Vonnegut when I reached 10 years of age, Stranger in a Strange Land at 12. He fed my curiosity and introduced me to art and jazz and rock n’ roll. Never did I doubt his love for me until after his first, and only, 18-hour operation to remove about 50% of a huge benign mitochondrial tumor. The big ugly thing grew slowly and lodged itself against his brain stem. It also grew tendrils that wrapped themselves around his cochlear ear bones making balance a trick – and showing us the need for an MRI. Those tendrils seemed to reach out and give us the finger giving new meaning to #fuckcancer as if it were tweeting #fuckhumans – as if. Brain surgery takes away parts of a person’s personality and can leave anger where once was joy and humor. His anger was directed at me and my brother took full advantage of the situation. He fed my dad’s anger like my father once fed my curios young mind. Lots of influence where a blank picture of me once showed his favorite kid. I took second pole position.

I flew to Miami after a rousing bout with prediabetes and an annoying loss of mobility of my left foot. A neurologist asked if my blood sugar got tested and if diabetes ran in my family. Yes it ran rampant on my mother’s side and my sugar tested 265. I dropped 25 lbs and looked rather grayish. A swift change of diet and no more wine (gasp!) took care of that problem.

But my family is prone to rumor mongering. My brother used it as an opportunity to convince my relatives that I had to be a drug addict and they’ll choose to believe a good yarn before the truth. Most of them doubt I have cancer, so on some level it’s conceivable. Hey, you know it’s easy to hold down an executive level job for nearly three decades as a full time drug addict.

It’s not easy being a woman in a male dominated field and my long and successful career abruptly ended the day of my diagnosis. Dense breasts kept me from early detection and stress spoon fed cortisol to the hidden tumors growing beyond my breast and into my bones before it was caught. Now four plus years later, my mother has been dead for about half of this time, I consider why she was told it would be too upsetting to see me and I was not given any information about the facility in which she lived. If my life were any indication of overcoming hardships this wasn’t one I could put up a fight for from way across the country and without any family willing to support my need to see her. I never intended to relate my cancer to her, but somehow I believe she’d have known regardless of her brain turning her into someone who might not even recognize her own daughter. Maybe it was for the best I didn’t see her that way, but I’ll never know.

I do want to say this: terminal cancer allows me to clearly see through fine tuned lenses the importance of love and forgiving. And if you cannot find forgiveness then to let go and forget. I’m equally as imperfect as both of my imperfect parents. And long ago I forgot those wounds left unhealed. I forgave my own foibles as I forgave them theirs. And as quickly as that — my wounds surfaced and began to heal. As I am the delicate mix of those two who raised themselves more so than me, both abandoned me at different life stages, they also tried to return to heal their guilt, which I admit now I was not ready to completely forgive. But if they saw me now I know they’d both be very proud of me. Grace under pressure exhibiting empathy for others and a spirit of giving where there’s need.

I leave these words in this blog, and hopefully expand it into a book that I hope to leave as a legacy if for no one else but myself and as a gift for my beloved partner of 12 years – C. Yet inter-spaced between the lines and words are my parents. Having closure with them came to me as I’ve taken a long time to think about what to say in this time of my life about such a difficult topic as this. Closure happens as it should when we are ready and cannot be forced by funeral, cremation, burial or memorial. It may happen while they’re living or not. Either way closure happens for the living to lessen sadness and soothe our senses of loss because the dead, as far as we know, have their final closure with the exhalation of their last breath. There’s no forgiving us anymore. We can only forgive ourselves for them.

My father wanted a party for his memorial. He wanted me to insure it’s success, and what a success it was. My mother and his later ex wife both attended. Both commented that my dad wouldn’t have wanted it any other way. This was just as I knew as his medical custodian what he meant when he told me how he wanted to come out of his surgery and when to say no to life support. I thankfully never had to make that decision. I also know the gift he gave me were much more meaningful than money and more dear than any object could posthumously express for him. Giving me those responsibilities showed his confidence in my intellect, his pride in who I am as an adult and his unconditional love for his daughter. I can still feel it as I can still recall so brightly the 250 or so people at his memorial singing with me, “Joy to The World,” by Three Dog Night.

Closure with a parent may take years to happen. The end result of such healing can be expressed by his favorite song: by easing loss and sadness and leaving better memories to give, “joy to you and me.”