Ilene, may you find it in your heart to forgive me. It’s harder to forget than forgive for you, yet you may be better off, if you cannot forgive, to forget. Some wounds become scars. Do your best to forget the scars, some of which only you can see. They’re not from your cancer but the way your life changes because of your cancer.
The people you love will fall away, but they don’t know how to see you anymore. They feel guilty talking about their problems with you. Its guilt that stems from what they realize is pettiness. But you can’t hang onto those people no matter how hard you try. Letting go gives you a more solid foundation on which to heal. It’s hard enough with negativity and trying to explain your situation. Some will believe it’s based on something you did or did not do. Neither is true and there’s absolutely no point in wasting time.
Time is the commodity you have so little of, but don’t worry. You’ll have exactly as much as you need. Don’t waste it waiting for that is the one thing you’ll regret.
It’s not your fault -ironically – you’ll forget a lot in five years. For instance I’m so late in writing this letter to you because I’ve forgotten so many times. I meant to sit and write it 100 times but I forgot or time slipped away from me. And you’re the most important person in my life and you know me better than anyone, don’t you? Please forgive me for not writing this long ago. I’m still as distracted as ever maybe more so. Don’t worry the cancer’s not gotten to your brain yet. We are doing pretty well all things being equal given five hospital stays, five types of chemo and five different oncologists. You have a lot to look forward to.
But there’s a few things I want to tell you. It’s been about five years since the diagnosis came down on you like a boulder even Sisyphus hadn’t the strength to keep pushing up that hill. Do you recall Albert Camus’ version of the myth of Sisyphus? Ridiculously, because he has accepted his fate, he’s happy. His punishment is only horrible if hope of a better life enters his thinking. If he continues to focus on his absurd task then he cannot fear the punishment, extreme given its grounded in of his lack of trust in his widow left behind to carry out his wishes upon his death, but he’s dead. No longer in charge of what happens to anyone whos alive. Camus grinds his pencil point to a sharp by alluding to Oedipus and that, although both situations are absurdly tragic, both Sisyphus and Oedipus are ultimately happy. But how can a boy kill his father, marry his mother and live with all that guilt?
They both “conclude that all is well.” And all is well. You’ll use this to mediate countless times in the coming years but you’ll never leave hope out of your thoughts. I’m doing well so all can’t be that bad.
The moment you give up, the stone will roll back and crush you. Don’t give up hope because all is well. I never break promises to you. I promise this is true.
You’ll keep dreaming of bigger better things. Throw away your lists of things to do before you die. You can hardly count on making a phone call these days why then put a constant state of anxiety upon yourself for what you’re not getting don’t – when you’re achieving so much? I say this to you with all your expectations boiled it down to ONE SINGLE thing… the northern lights. Don’t forget that’s the one thing you’ve dreamed of your whole life. Find a way to go!
If you get to Scotland and Britain, awesome. You must try to hug those amazing people who have loved and supported you from afar.
However it would be great if your friends and one or two family members who physically can – would find a plane ticket to come out and see you??
There isn’t a lot left except loving more fully and learning to accept love better and know when to let go. There are a couple of places I’ve not been yet and maybe learn to fly or horseback ride. But I’ve not seen these as regrets but just life and living and finding the budget. I realized tonight in fact that if not another thing I wanted to do happened, if not one single trip to see and photograph the Aurora Borealis never came to be…my life would be a success.
This life is all you get and not having died as an infant, toddler, teen, or any other age is certainly an accomplishment as noted by our current global health crisis.
I loved with all my heart.
That’s the life you wanted.
I continue to live with love as the guide for my actions. You know by now all that’s mattered until this point is love and by shining your light you’ll attract amazing people to help support you through the most difficult time you’ll ever know. Leading the emotional rollercoaster is uncertainty, and coming in at a nose to nose tie is fear.
I was fortunate to meet people and travel and learn and become a success in my career and break a lot of glass so other women wouldn’t understand the shards that stay under your skin, I took the bullet. Many women around my age +/- 20 years did too.
In general I’m happy.
But most of all…there was and is LOVE. Einstein even was quoted as saying e=LOVE. A joke, but you get my sense of humor.
He and other scientists, ancient and later in the end said love mattered most.
“Tell your son to stop trying to fill your head with science – for to fill your heart with love is enough.” Richard Feynman
Frees us of all the weight and pain of life:
That word is love.” Sophocles
I suppose that’s about it for now. More later but remember one thing, I love you.
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.