Absolutely Late, Lately: Adding up the Moment(s) of Terminal Cancer

Everyone’s got the right to question the respectfulness of someone who’s perpetually late. Or do they?

I recently commented on a blog post with regards to feeling disrespected by people who don’t respect his time because they cannot arrive on time. Ignorance of individual consideration for specific situations never whispered beneath his indignation. My question back to him: perhaps there’s a few reasons that have nothing at all to do with you at all. Some people have limitations and one of those may be effecting someone very close to you either now or in your future: people with metastatic cancer.

Time Stand Still

In several blog posts, I raise points about what changes with a metastatic breast cancer diagnosis. My self inquiry never ends with the conclusions of the posts. I still question the change from (t) time=unknown to t=0 (death=0) due to the incredible number of factors associated with our mortality. The factors are further confused by the many interpersonal relationships in our lives. It’s in those intersections between people one question stands out. It’s a question that no self respecting breast cancer blogger won’t eventually ask themselves publicly.

Probably more self deprecating than self respecting, looking back on my four years here on WordPress reveals a number of mentions of this particular affectation. The most well- meaning of us with metastatic breast cancer finds themselves running behind the clock more than we’d like. I think I may have come up with a couple of reasons, not excuses, as to why we’d get sent to the principal’s office for our tardiness.

1.”It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!” (Lewis Carroll, Alices Adventures in Wonderland)

Most people enjoy the freedom to make plans. Normally everyone lives without having to think much about plans they make day to day, week to week, month to month, and year to year. With terminal cancer, one lives on less than 24 hour notice. If you have a diagnosis of MBC or another metastasized cancer, you’ve probably had plans for the the day, and for which you have had to send the dreaded text or make the embarrassing call to say, ” I’m sorry I can’t make it, ” or “I’ll be two hours late.”

Why? There’s no time to catch up with yourself, looking at the current moment wondering how I got here and wanting to drink in all of what’s surrounding me. I can’t quench a thirst that’s infinite yet has an absolute end somewhere in sight. Trying to grab ahold of everything I drop my minutes like rain in a thunderstorm and I cannot get them gathered back up around me into a reasonable explanation. Not a satisfying one to the party receiving my lame cancellation.

  1. Dear, dear! How queer everything is to-Day. And yesterday things went on just as usual.” (Ibid.)

Nothing being the same yet all things being equal, you’ll find out just how strange life can get in a split second. People disappear who you held dear and you’ll have no reason why. People who you never thought would come through in a pinch, do. And over the fullness of time new people will find a place in your life.

For me, many of those people are either ethereal online support friends, people who are older and for whom age has presented the question of death many times, people who have similar prognoses, and those who have also brushed up against death. Aside from my older friends and not knowing the lateness of my online friends, everyone else who has stayed the course with me forgives my lateness.

If the attention you have ran at a deficit prior to a cancer diagnosis, post diagnosis you’re probably in for a special treat. If you also suffer from fatigue, this seems like a dichotomy.

  1. We’ve no time to wash the things between whiles.” (Ibid.)

Theres now the phenomenal time travel that happens while I take entirely too long in the bathroom.

I spend hours on end with good reason in the brightest room in the house: the potty. I am engaged with the toilet straining against constipation, trying to stop it’s devilish alter ego – diarrhea, vomiting from chemo or any number of reasons, or for the more pleasurable bathing to relieve pain and taking time to relax and practice self care. Additionally finding better ways to wear my bizarre post chemo hair or to cover your my of hair; and, doing my makeup and drawing in missing eyebrows can take up hours of my life, however limited my time may be.

No one wants to look sick. But the less sick you look the more people doubt your level of illness. It’s a catch 22, but a fact.

  1. I forgot.

  2. I remember!

6.”Not all who wander are lost. If you don’t know where you’re going any road can take you there.” (Ibid.)

Wanting more time before it’s all over leads me down the rabbit hole into a place where I get lost. Lost inside a book, a song, a sunrise, a hug, a poem I’m writing, a memory, or a hope for something in a future that can at any moment be cut like a scene in an editors office from a films final print. I’m not lost on my path, though. It’s winding and it’s convoluted and full of time that I’ve somehow let slip by.

Measuring the importance of what I’m up to at one moment versus doing something pedantic like the dishes or the laundry. Writing my next sentence rather than sitting in the living room where my friends are and not having any reason to sit out there with four guys who love me and take me seriously although I’ve been late or a no show on many occasions to appointments with all of them.

One gets where I’m coming from because his constant pain keeps him pinned to the bed for days on end. One has attention deficit that’d knock any 5th grader off his Ritalin. One suffers the continual strain against depression. Ones seen too much to care about time as a concept but cares so much about the people in his life you can count on him in any situation with a one word text message, “help.”

  1. “The hurrier I go, the behinder I get.” (Ibid.)

I’ve come to realize it’s so simple. If those who cannot understand make a little room to fit the different senses of what time we have to expend and not take it so personally, they may even learn something. My life before cancer was so filled with the stress of time and being punctual I have to wonder if it didn’t contribute in some way to my metastatic diagnosis.

Perhaps if I slowed down a little I might have even noticed my physical changes prior to the disease falling like a domino into stage four. But I won’t look back. I’ll simply look at the moment and breathe in all the possibilities right now has to offer. And I hope your time with me was well spent if you have cancer or not. I certainly respect your time as you read and even comment on my blog. It’s your gift and I cherish it.

The history of Metastatic Cancer: written by the losers

The documentation of metastatic breast cancer is written by those of us who lose our lives to the disease. No one gets to write the end of our story with “she lived happily ever after” – but we aren’t losers. We struggle with the language to describe how our bodies ultimately succumb to a terminal illness. No war, no fight, no metaphorical discourse makes sense. The fact that the medical community focuses on prolonging the time we get to spend in our diseased bodies, rather than prevention of progressing to stage 4, evades understanding with the exception of profitability. Each of us walks around with a dollar sign attached to our backs instead of a bullseye. There’s no gun fire heard in the end, instead the cries of pain and anguish, fear and loneliness, and finally one last breath of life exhaled into the atmosphere.

There’s parts of our stories that arise out of discourse between one another in our tweets, our Facebook posts, instagram photos, and our blog comments.

As Churchill stated: ‘History is written by the victors.’ Further, the answers to any questions regarding history are delivered to us by the living, so who can really say how truly corrupted the cannon of medical information we digest is by those treating the people suffering from this disease. The honest and most dependable information comes from the losers who leave behind the richest historical record of all. The gift of our stories tells the truth that should become the data to help inform the people who come after us. Unfortunately there’s very little light at the end of a very long tunnel to lead the newly diagnosed to a better prognosis than death.

Perhaps it was Winston Churchill’s novel thinking about his own dangerous words and bloody victory as it applied to the war through which his convictions and leadership pulled his country’s people. For the most part. Yet the end of the war left an unconscionable number of citizens dead and untold billions in collateral damage to Great Britain. None of the dead can speak for themselves about the way they died or about the atrocities they witnessed or even committed. The United States, late in entering the war, as it’s been far, far too late to fund the research to fuel its war on cancer and other interesting PR campaigns without true commitment for the good of humanity.

Cancer history isn’t written by the winners

In the case of cancer by reading my blog and the words of so many others before and who will come after me, we are creating the historical record of metastatic breast cancer. Our words will outlive us. I wonder quite often after I am dead will my words still carry any meaning. I’ll be speaking beyond the grave to what I hope are fewer and fewer people who need to know that they’re not alone in how they’re feeling.

My blog and hundreds if not thousands of cancer blogs and the recently notable rise in cancer biographical book publishing sends an awfully different message.

Losers write history, too

The songs of the dead will play long after our voices die with our bodies. During the final week of Breast Cancer Awareness month, October 2019 A.D. I decided to look back at my comments and answers to questions posed to me by readers. Some could become blog posts in and of themselves. More often than not, the comments respond to emotional reactions to the relative post.

Here’s a few of my many comments in response to those speaking out in response my posts or on other blogs I read for information, support, and even laughter, I wanted to pull together to share here (edited for brevity) and as provocative fodder for new discussions I hope in the comments on this very post.

Many contain broader ideas about metastatic breast cancer. I hope you find these quotes, though out of context, as interesting as I did. They’re not the blog posts themselves, so you won’t get redundant content but a look back at the history of a metastatic breast cancer thriver – me as well as those to whom I’m reacting.

History is therefore written by living. Here’s part of my living record, and I hope you’ll respond to some of the more provocative comments and keep this discussion alive.

Quote Me

“Cynical and bitter” – my husband remarked on a read of the first or 31st draft, of this post. I said rubbish, my peeps will understand because it’s true. (although an ugly series of thoughts generated this puddle of poesy. A physical setback created a situation where my tendon had locked up, causing the foot to painfully turn inwards and I threw myself in a hot bath, post morning pain meds and fell asleep in the tub. I woke up crying “it’s not fair why is this shit never going to end,” and then out came some inappropriate jealousy of people who got supported because they look outwardly like they’re sick. I try to make every day as good as is possible in my circumstances. Including looking good as possible to somehow trick my consciousness into believing I am okay. Some people can outwardly smile in all,that pink light shining down on thief ‘cured’ bodies. But unfortunately these diseases give us a vocabulary and emotional shorthand that we immediately understand, making rich connections, both on the cerebral and gut levels.”

“Yet it’s important because everyone has such a different experience and it’s important to understand how to deal with things when someone is newly diagnosed especially with metastatic cancer. We don’t know what tomorrow will bring – we cannot make long life plans and our time is so valuable it’s hard at times to hear about people griping about things that mean nothing in the grand scheme of things. I’m sorry you had to go through so much horrific treatment as well – I was already with my second oncologist by the time this practice had gotten back to me. If I’d waited for them I’d be dead already. “

“Everyone must learn what they can do for themselves and try not to freeze up when things seem at their worst. I am the head of my cancer care team. No one knows me better than me and a one hour meeting once a month if I’m lucky these days since my oncologist is so over subscribed. But he listens to me and responds with real solutions that we agree together based on what I want and his knowledge. Still, I wish I could do more for you to help but I think maybe just knowing we aren’t alone sometimes works wonders.”

“Oh it was horrifying and only my persistence and perseverance paid off – I called CalMed and explained my situation and I do recall not being able to hold back my tears mainly because of frustration not the diagnosis since it was difficult to figure out, which was worse. Within 10 minutes I had gotten switched back to my original primary care physician and then was given proper treatments and taken off tamoxifen and put on to aromatase inhibitors, into chemical menopause and began Xeloda at home. I did quite well and even battled my way after changing oncologists twice and finding a surgeon to do an actual lumpectomy to remove a small leftover of a tumor and to get a fresh pathology after success with Xeloda.”

“I did not fare well on many of the injections and had severe responses to them until I was put on xgeva, faslodex and xolodex monthly. That worked but my oncologist only wanted to see me once every quarter and punted my care all over to palliative who are horrifyingly overworked. I then switched to Stanford and have been there almost two years this month. Every December because my original oncologist wasn’t watching closely enough and a mishap the following year with more insurance nightmares I filled up like an oompah loompah with ascites abs was drained multiple times. I only hope this year to be in Hawaii on Kauai as a safeguard to being put in hospital – hey if I do have to go the view will be better anyway.”

“You know as well as I that no matter what country one resides in that self advocacy will get you what you need more than waiting for things to happen to you – you have to educate yourself and make it happen for you.”

“It’s a way to have the patient blame themselves for being a caring person? Everyone has stress. Everyone’s got some form of childhood trauma. Looks like an easy way for researchers to try and finagle their way into the spotlight. Pigeon holing and creating a way to have cancer patients blame themselves doesn’t seem fitting or fair, just cruel and wrong. People back in the 50s were far more repressed and didn’t openly discuss feelings around the dinner table, but the incidence of cancer was 50-60x less than it is today. I suppose those times when abuse took place couldn’t possibly have been as severe as today (sarcasm) but you get where I’m going. Environmental causes increased the incidence of cancer as well as other factors I’m not as well versed in talking about. If love to hear your thoughts- stress is on the increase for everyone women especially which is why heart disease is the number one killer of women today. Cancer is a close secondary
Pain like beauty is more than skin deep. The difference between the two is less than I’d imagined prior to cancer. Beauty takes lots of appointments – so does cancer. Beauty uses all sorts of carcinogenic chemicals to eradicate being ugly – so does cancer. Beauty can be excruciatingly painful- so can cancer. The end result of finding the best way to enhance oneself to look beautiful can end in disfigurement – so can cancer. The endless list in my head goes on for miles. My point, Nancy my dear virtual friend without whose support I’d echo in a wide Sargasso Sea of words, is tha the surface is all we can scratch here. The depth of the itch lies beyond what conventional means alleviates and we are left swimming in pills, yoga, and advice none of which will even touch the emotional break of a heart that knows it must stop beating from the ugly disease killing the body and taking another beautiful soul down with it. God. Cancer really sucks.”

“It’s hard to ask for help and mostly when I do ask it’s too hard for people to follow through on their offers of “call me if you need anything.” So I typically drive myself to and from chemo, and other appointments, etc. No one likes to feel like a burden but read my blog piece on learning to receive as well as give. I feel like it’s a hard lesson to learn that people want you to accept their help and accepting graciously doesn’t allow the giver to feel good about helping out. It’s rejection of the worst kind because neither person wants to say anything to make the other feel badly. It’s a tough one…”

“Your commentary on my blog never cease to inspire me to keep writing and always bring my heart to a quick stop. You remind me of why I started this blog – so those with terminal illness and cancer diagnoses know they’re not alone in their experiences, emotions, and high and low points. While not the same, dimensionally similar enough to feel a virtual hand holding yours and have someone to walk with even if just for a little while. I love you and I care about what you feel and how you feel. Your feedback means so much to me. What a day too – I have my last Taxol treatment Monday next week and then a little break and back on the Ibrance. Maybe the lighting of fatigue and chemo brain can give me the strength I need to write more and start the first book. I thought it would be poetry but it won’t be. And as the draft starts to take form I’ll reveal the type of book and why I chose to focus that aspect of cancer.”

“How it’s it so hard to do this some days and others it seems so easy like nothing’s ever happened, nothing is wrong. Like day into night…I slept less than an hour last night thinking a lot about where my friends are, who I am as a result of their involvement in my life, some had a huge role especially people who I’ve remained in touch with for many years, people who I can see if I hadn’t seen them in 5, 10, 15 years and pick up where we left off. I think there are people I want to see regardless of cancer but in spite of also, if you know what I mean. My relationships have shifted so much, that instead of intimacy I have people I can rely on…it’s so strange. I would much prefer intimate, warm, relationships. Some friends have that some do not. I’m naturally a hugger and a physical person and I give love to people I care about very naturally. I suppose it comes down to not thinking about it as if we have terminal diseases when we see them. That said – If we didn’t I would not be in the company of women who I’ve come to appreciate as my peers and my friends- you included – and I absolutely think I may want to get over to the UK and maybe we all can get together for a day or two and I don’t think it’s out of the relevant range to believe that women like us cannot get a weekend together some by plane, by train, by car, to laugh and talk and actually meet. Wow that’s a thought. And given six months and some funding potential for rooms and such I bet we could do it. Have a think on it…I believe in anything I want to manifest can come true if I put my all into it. And speaking of all, time to get ready for chemo and oncologist appointments! Yikes”

“Terminal diseases will turn a coward into a superhero, a shrinking daisy into a tall redwood, and push us to the edges of ourselves that we never dreamed we could see. There’s no other way than to put it all out there regardless of the facet of cancer that I might focus on that week or day. There’s a lot of layers of emotional pain and energy to explore, though the tendency is for the most prevalent to wind up on my blog. Yet there are so many issues if I have the time I will try to cover – I wonder what people want to read about and would love any feedback regarding topics you find most helpful or interesting to read.”

“A “cure” is a misnomer make no mistake. However to cure each person based on their individual types of cancer and the millions of permutations that caused our bodies to not recognize cancer cells it heretofore killed off with our own immune systems is the key to survival and treating chronic not terminal cancer probably won’t make enough money for research in pharmaceuticals but for the hospitals, cancer centers, and teaching hospitals that tirelessly and for less money work on this very problem. Maybe the arrest of the opioid pushers will bring to light the corruption of such awful people who profit financially on our backs.”

“I wish you peace in your grief. Anyone lost to cancer is one too many. I believe the journey the living make after the death of someone dear never comes easily, and no amount of words make the time go fast enough to find the day when you’re not feeling those awful pangs of the indescribable when a song or some other reminder brings their memory rushing back. I cannot listen to certain music without immediately recalling memories of my dad. I try not to become tearful when I sing along. But any fear of my own death is in leaving my dear ones behind. Love is the tie that bounds life. I’m hopeful to be certain with regards to a curative process and hope that we will find a way to access our own powers of healing through immunotherapy in my lifetime. It’s a strange case when the pharmaceutical companies cannot use a cookie cutter, one size fits most approach to maximize profits. We won’t see it soon enough.”

“As for pain – I’ve had a palliative oncologist both prior to and since I’ve been with Stanford. Palliative medicine is so greatly misunderstood- I am grateful but I am also using opioid based pain meds as well as meditation and mind body deep work. But I hurt pretty constantly. It doesn’t show but boy it hurts. Bone metastasis is just crunchy painful if you know what I mean. I think it’s deplorable your oncologists don’t look at the whole patient and palliate your pain with integrative medicine, such as ontological massage, acupuncture, medication, and CBD/THC. CBD doesn’t work well topically and – opinion only – wastes money I don’t have. Further my palliative oncologist has recommended smoking the oil 3:1 or 2:1 CBD to THC ratio. There are medical marijuana growers who specialize in these types of tinctures. It also helps with my appetite and with sleeping though it makes me a bit goofy, it’s better than most other addictive things we can ingest.”

“It’s often difficult when terminal or chronic illness doesn’t comprise ones daily work routine to remember we all end at some arbitrary time stamp in the future. While feeling sorry for myself over the last week or so, I thought a lot about my loss of identity – and the therapy of writing got my mind to shift as always to a more positive way of viewing what I honestly thought about as wasted time in a career. All the work to climb every last rung on that still male predominant corporate ladder – especially in high tech without missing a single one. But not really. To your point our strength is redirected to navigating the tangoes of paper, contracts for insurance, finances etc. it’s like being the CEO of MyCancer, Inc. Do you miss the daily grind? Maybe I just was glamorizing whats no longer available? Death is death. Everyone’s life ends the same way and it’s the only thing no one has any assurances of what happens once we do die. At a visceral level it’s hard to accept although intellectually we bravely deny any fear. It’s uncertainty I think.”

“The statistics are completely different from the reality regarding the mean lifespan from the time of diagnosis and mortality/ end of life. It’s as individual as the cancer itself. There’s too many influential factors such as stress and environment to really understand. The fear of death never weighed me down much, and I find myself interested in what happens to our consciousnesses after our bodies fail but not interested enough to lose my gratitude for the hope of another day of life. My commentary has far more to do with the questions I’ve heard from others, their fears, and their legacies. My legacy, I hope, is to depart our mortal coil with a couple of written documentations/ books reflective of my consciousness while I was here. A way to travel to the future and bring the past forward for as long as people need to read the thoughts of their predecessors. In that my respect for you and your accomplishments exponentially increases as my familiarity with your grace and your talents increases. Our lives will go on and not have been in vain for having the courage to use our voices to yell out drink the past so that others may benefit from our unnecessary and early deaths due to a disease that’s not only on the rise as a statistical result of the illness we both unreasonably suffer from but that we both use as a platform to grip those who can’t find the words to express how they feel and how precious life becomes after the gauntlet drops.”

“Technology…changes with the will of how frustrated the steel-nerved steady user can tolerate. I’m so sorry you had to go through some irritating stuff to simply post a kind comment. Imho WordPress is the best platform, after TypePad, and far above blogger and the corporate blog software I endured during my short 28 years fighting the good fight as a woman in high tech. I suppose in some ways I hope to leave a similar legacy in the works of metastatic cancer. Working with my words (see my personal tech blog https://techronicity.typepad.com/blog/ – which I no longer keep up but keep online for posterity I suppose if nothing else.) Good news: C is better, and my hope improves with each day he regains his humor and his memory. In some ways depression is a lot like the effects of cancer and chemo, the deathly combination that sticks us like a stamp on a paper envelope. Sometimes my essays ramble on because they can. But this blog comes with too high a price for the expensive toll it takes to walk on a path with the freedom to speak my mind. But speak I must, and for the kindness of your expressions of gratitude I am humbled.”

“But it’s all those yes’s that turn yesterday’s into
Tomorrow’s and waking up to say
Yes I’m still alive on this new today.”

“This particular poem was written in response to a “yes” writing prompt on the Journey Beyond Breast Cancer @JBBC blog. It’s wonderfully rich in content as it’s author is an expert marketeer, writer and one of my online #cancertribe who supports me from a distance, as so many of the writers and readers who have touched my life and for whom my blog has value in our shared experiences.”

“Say Yes, A Toast
To Hope and to help
And to healthier food
To exercise, to water are really good
To Cats no doubt oh positively
But I suppose, i guess, dogs are fine, though sniveling
To Hugs, to expressing ourselves creatively
And to Travel to places, some close some a far
And ommmm… yes to your Breath and for seeing the stars
Friends, new and old even those left behind
It’s for Advocacy and even acting immature
And binging on when you want to unwind
It’s for soft socks, sunshine, and the perfect hat
Yes for Family (including by blood and by choice) who love us and our crap
A big yes for our Carers
Even still my chemo port
To oncologists and nurses and behind the screen support
That’s including our blogs through which we’ve “met”
But pardon the pun, is it coffee time yet?
And lastly but not leastly, a big YES to Marie
For compiling our posts nearly every weekly
With wonderful, bravely honest and willing
To openly share to the lonely, the scared
And say yes we really do care about you and we dare
Through our comments and emails that we always answer
So fewer people feel must feel all alone with cancer.
And I can think of a thousand more YES’s
And probably equal a number of NO’s
But yes isn’t just about false positives
It’s about letting our lights shine and glow.”

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.

Diagnosis Fallout: the week after first learning I had stage IV breast cancer

On the eve of Breast Cancer Month, which I shall only acknowledge with true stories of the struggles of stage IV cancer “metavivors” I will kick off with a letter to a team of oncologists at Valley Med in San Jose California nearly five years ago. I reached out to their group out of sheer desperation one week after I was diagnosed de novo. I wasn’t diagnosed prior to this because of my very dense breast tissue that’s indiscernible from tumors. Regular mammograms aren’t given until the age of 50 and most dense breast cancers are found between the ages of 40 and 50, and we have a much higher risk of breast cancer, too.

With that I present the letter that was answered by phone call with the offer of an appointment five months after I sent this letter via email, mail, and fax:

I write this hoping it does not fall upon deaf ears and plead with you for help and have nowhere to turn it seems otherwise…

I was admitted to Good Samaritan Hospital’s oncology floor last week after a late night in the emergency room and in the early morning of Tuesday the 25th at 1:00 am. At that time my primary physician and I concurred that the cause of my severe, and crushingly painful cramps after 18 hours of vomiting most likely was food poisoning. I was finally released this past Saturday the 28th of March late afternoon with a MedPort inserted in my chest, a diagnosis of stage IV terminal cancer that immediately requires treatment for a metastasized malignant tumor diagnosed by the oncology staff and based on a dozen or so tests.

Mind you I was seen by an oncologist, for just under five minutes after 6:00 pm Friday the 27th. The doctor stopped by and said he could not advise me, but did say I should take the “hormonal treatment path rather than the chemotherapy path,” but he could not be my oncologist. I’d already seen a surgeon and was “biopsied and operated on for a medical chemo treatment port.” He apologized and swiftly left my room.

The cancer is causing many problems and I’ve now reviewed all of my online records to find the state changed my coverage and without notifying me, however, I am allowed to receive care according to page 38 in the handbook for these types of situations without the consent or referral of a PCP. For approximately three days we were given the run around as I laid unfed, mainly ignored except by a few good RNs, and in pain. The administrative staff wanted me out and told me this was due to constant pressure by Valley Med to get “their patient” because I “represented their money.” This is no exaggeration.

I order to move things along I was provided surgery by Dr. Jeffrey Gutman (now retired) whose disregard for money overcame the hospitals’ greed, and set me on an expeditious path to treatment. Friday, after three days, CalMed informed me that my primary care organization through CalMed changed unbeknownst to me. Valley Med was my provider and Good Sam refused me any further treatment even though my partner explained he would be glad to cover any additional costs until the transfer to Valley. Good Samaritan declined his offer of cash, instead discharging me with a big bag of prescription medication on Saturday.

I required a referral from my Primary Care Physician. I no longer knew my doctors. This referral from my new PCP, the Indian Health Center, HAD to to come to Valley Med to receive any further care. Monday morning, March 30th, 2015, I telephoned and left messages with no response no fewer than five times. My friend drove me to the Indian Health Center at 2:00 pm where I was unknown and thus treated to a series of comical paperwork procedures. We were left sitting in a room with two armed body guards to oversee children with the flu, pregnant women, and several people in line for their prescriptions to various category II narcotics, and us. I was asked to fill in some forms after which we were taken to an unfurnished, nonmedical building next door to this very unsanitary facility. This place happened not to be a facilitator of healthcare but instead a gatekeeper of desperate patients in need.

I have tried everything and of course this stress is taking a toll on my declining health. I can only plead with you: Please do not turn your backs. My father passed away from brain cancer nearly three years ago and the travel to help him and take care of his final wishes as his medical custodian forced my unemployment and the immanent decision of using CalMed as a back up in case of emergency. That seemed a wise choice and having no communication from California or Santa Clara County (I’ve lived in the same address/ residence for six years and have my September 2014 insurance card) I’m beginning to wonder what false hope I stood upon to receive such an awful prognosis – both of my health and of the potential of proper treatment.

Please help me. I am swimming in red tape, prescriptions and simply cannot reach anyone to begin treatments which I desperately require.