One Word Can Make All the Difference

So, there’s wonderfully good things that transpire to create a solid high of energy around us that heal. Then I think neutral stuff happens all day long like stopping at a red light. It can be a negative event if the conditions we perceive make it so: e.g. I’m late so this might make me later still; I have bad luck. Outside of all perception and control things happen all around us: environmentally, socially, scientifically, etc. We assume we have some way to partake in those events or that they conspire against us to create a negative vortex or a positive window or door to look out or step through. It’s vague. But the vagueness is very interesting isn’t it?

Perhaps you feel like cancer or disease is in some way your fault or a conspiracy of circumstances. I actually believe it’s both. In my heart I now know there preceded my cancer diagnosis events that were incredibly stressful creating a hospitality center for my cancer to take up residence in my body. It’s not my “fault.” There’s no way we can know just what dis-ease lie in wait for us except for the occasional discordances like diabetes, which is generally genetic. However that’s controllable with diet.

We live in a diseased environment that much like our bodies under stress develops dangerous conditions in which nature slowly dies. In some sense I’m glad I won’t be around to see the death of our planet as we know it. Depressing. But truth be told did we need the fluoride in our water? Did we need all that corn? Do chickens need such big breasts that they fall over? Does organic even mean without chemicals? No. None of this is true. But we are fed a body of fear to add to our newly stressed out lives and we wonder why breast cancer rates since the 1950s have increased from 1:40 to 1:8 (or 7 depending on who you ask). That’s a gigantic rate of increase in a very short period of time. And not to get too much into numbers but only 5% of cancers are genetic. Including breast cancer.

So what can we do about all this? Well I am headed back to Commonweal in Bolinas, California in two weeks to attend my second session at the Cancer Help Program. (CHP information)I’m giddy with excitement and literally cried tears of joy upon receiving the call last week. And we are in the midst of closing on our house and finally finding a new one. But it doesn’t have to be stressful. I sit in acceptance of offers of help from a professional organization expert hired for me by my realtor, with C’s assistance and the enlisting of a moving and storage company if it comes down to it. I’m not giving up the opportunity to move to a new home with my life partner and best friend to drag the same shit along buried deep in a dark box from my internal attic. No point. It wasn’t working for me before so it won’t work going forward.

The first week long program started the healing in October of 2016. But I knew I wasn’t well and wound up spending a week in the hospital upon my return. C was at the apex of his depression and there was no relief in sight. He was hospitalized about two months later as well, for his anxiety had gotten so bad that I couldn’t in good conscience watch him deny his condition any longer. A long road to healing began for us both individually and as a couple.

But something seemed really undone. Like a frayed rope or like confetti or ticker tape after a parade my mental streets need sweeping. I called one of the founders of the CHP in March hoping to get to the June week program before the summer break. Only eight people can attend. September had the right mix for me with the other seven attendees. June just didn’t play out.

I am blessed again to benefit from people I love and respect and who gave me a path to find my way to new meaning. The most profound statement of healing cane from one of my private sessions with Michael Learner, the founder of Commonweal. He said, “Ilene, why don’t you call yourself a writer? That’s what you are.” And a simple statement changed the course to bring us here. Today.

I am a writer headed back to the Cancer Help Program in two weeks. In the meantime I hope to post one more time to respond to Nancy’s Point and her Blog Hop. I feel like a bad friend but I know she understands.

I’d check out her blog if you’ve not been there yet. I love Nancy’s way of explaining the emotions and medical conditions about having cancer and losing her mom to cancer as well. Take the time to read her stuff it’s worth it. She’s also written several helpful books especially for those new to this cancer culture that you’ll welcome even if it’s old hat.

And with that I leave you with my love and my light and a gentle goodnight and a poem from Robert Frost:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference

Maybe I’m Amazed (you’re still alive)

Borrowed time:
(To)live on borrowed time
to continue living after a point at which you might easily have died:
Since his cancer was diagnosed, he feels as if he’s living on borrowed time.
to continue to exist longer than expected:
It is unlikely that serious decisions will be made by a CEO living on borrowed time.

Definition of “borrowed time” Cambridge Dictionary Online

The value of living on borrowed time bears an interest rate that’s unpredictable and unpayable. Apparently last December, my body had an amount of cancer physically insurmountable by standard oncological metrics. My disease probably should have killed me by now. How do I find a find a way to absorb such potentially life altering information? I’m unsure how to feel about it, since my recent scans showed that 26 weeks of Taxol had gotten rid of my tumors, and my bones revealed not cancer but the mesh-like scars of healing?

Since last week a cloud of oxymoronic amazement and fear hung low and put a bit of a fog over my generally happy convivial personality. Introspectively and quietly I digested the news my doctor delivered on July 1st. He didn’t expect me to make it to sit in his exam room through much of this year.

As I quickly scanned my mind for clues to his unrealized prognosis, I could only recall a few subtle cues. He became more empathetic generally and more concerned with my stressors at home. He’d say “bless you, Ilene, you’re a very strong woman.” He’d force smiles sometimes. I thought he’d been overwork and just tired.

This week a very competent nurse practioner took my vitals and we discussed my health in general, my increased neuropathy, my overall issues with pain from fulvestrant, and how I’m tolerating Ibrance and fulvestrant combined treatment. If you’re not familiar with Ibrance, it’s a targeted therapy used to treat metastatic breast cancer in patients who are hormone receptor positive by going after CDK 4/6 receptors that basically stimulate the growth of malignant cells especially in metastatic breast cancer. In studies the drugs that are chemotherapy, although taken in a pill form at home has shown an extension of time without new cancer growth and a halt of current cancer growths by about two years. In metastatic terms we like two year life extensions.

However the drug still costs $18,000 per month. I lost my Ibrance after the second dose spilling 26 capsules down the toilet. Yet here I am alive and with my disease stable and poof like that once again Ibrance gone. I cried from frustration and worried for my life again. But the nurse practitioner put my mind at rest and called Stanford’s pharmacy where I am now getting my at home bottles of chemotherapy from, and they procured a full emergency prescription through my new Medicare part D insurance company Blue Shield. Now, all is right in the world and with little stress on my end. The very thought of an agency going to bat on my behalf gives me hope that there are people who understand that stress kills cancer patients by infusing the body with cortisol, a cancer cell’s favorite desert. Now I am back on the medication. Borrowed time indeed.

PET Me.

During the same visit my oncologist came in to see me. He revealed that he didn’t think I’d make it through March of this year. He said, ”keep continuing to amaze me.” I, his miracle kid, amazed him? The clues of his grave and real concerns about my mortality started before the commencement of my appointments. He projected and telegraphed this through his change in facial expression, with the bounce in his step and via the quickness of his pace when entering the exam room. He looked at me quizzically and it seemed to me quixotically in the fanciful way one might peer into a lions den and hope the big cats weren’t hungry.

Prior to May’s PET and June’s CT scans he quietly would sneak up on me with his lips pursed and brow furrowed. “How we doin’, ” he asked with hesitation. ”Great!” I’d exclaim. And given the circumstances it was true. My white blood cells and liver function both responded by remaining stable even with Taxol for 26 straight weeks.

Yet there’s another twist to my life extension and projected expectancy. If you’ve read my earlier posts from December of 2018 regarding my hospitalization it was due to a complete clusterfuck by the Medicare part D insurer Silverscript, Pfizer, a nurse practitioner at Stanford Cancer Center, and the problem of the drug costing so much money that no one without insurance except the hyper rich can afford it.

It was due to a fax that the Stanford nurse practitioner never sent to Pfizer for a three month hardship supply because my insurance was dropped by Silverscript and the CVS Specialty pharmacy (both owned by CVS talk about the Fox guarding the henhouse!). I went four months without treatment and landed in the hospital for over a week until I went poop. And as all of you who have cancer of any kind know, your digestion is of utmost importance to your oncology team! Pass gas and you’ll pass the get out of the hospital test. Passing bowel movements is even better.

Good Times, Bed Times

Today was a bed day. Never got up once. I did bathe and fell asleep in the tub, but I needed to rest my body in the transition from one poison to another and from the psychological internal melodrama of finding out I should be dead. I’m glad to be here writing this post at the four year and four month time stamp since diagnosis. I’m pushing hard for year number five, and here’s three things I’ve learned through this waking nightmare called metastatic cancer:

  1. Meditate. The mind truly is connected to the body and I know along with everything else I do this is mission critical as much as keeping stress to a minimum.

  2. Cancer is about money and metastatic cancer patients are loose slot machines that pay out consistently like the ones near the entrance to a Vegas casino to lure people inside. Follow the money if you need something like medication.

  3. Trust your instincts and listen to your body. For instance right now I know my ascites is acting up and I’m going to push for a draining periocentesis since sleeping morning to morning is one way my body tells me to get a move on with the procedure.

And until my next post, be well, have fun, and follow your heart. Sometimes following only your head can send you down the wrong path even with the right logic. If there’s no path in to put your left foot on, just feel free and your right foot will land on a cobblestone and off you’ll go in a new direction.

💜

Cancer and Freedom, Lost and Found

When I think about it, anyone with cancer or who’s had cancer suffers from many losses. Can we boil it down to a loss of freedom? In a way we’ve lost many of the freedoms they once we took for granted.

We’ve lost the freedom to make plans long or short term. Gone is the freedom to have a week where we don’t have to worry about our ability to keep an appointment. Further, we’ve lost our freedom to plan on vacations too far out in advance. And in some cases we lose the freedom to make certain decisions for ourselves. And what I mean by decisions, I mean our cancer actually makes the decisions for us. 

For instance, can we really decide, as I am in the throes of right now, to move to a new house in a new city? Perhaps  cancer slows us down so much that we can’t even meet deadlines required to sell and buy a new home? The Many mornings when I can’t wake up to take the 2 1/2 hour drive to see the new city and to experience it that’s a freedom that I wish I had. Maybe we could’ve even moved even further but alas I don’t have the freedom to travel quite as far as I used to. I need to be close enough to a hospital and to a cancer center and find a good oncologist. I’d also like to be close enough to an integrative health center, but I know that’s asking for a lot.

Most people can enjoy freedom in their lives day today week to week month to month even year to year. With cancer one lives on 24 hour’s – or less – notice. Have you ever had plans for the following  day, waking to know  you had to make that call and say I’m sorry but… fill in your excuse here. The excuse of pain. The excuse of exhaustion and fatigue. The excuse of just not feeling up to it. That is not freedom that is prison. 

Cancer puts us in a prison behind the bars of our bodies. Ironically, our bodies become the thing that holds us behind bars shackled  to a disease that’s inside of us. A disease that’s using our own bodies try to kill us. 

Essentially were on death row.

Yet even people on death row sometimes receive a pardon with a state elected governor intervening in their impending execution. Sometimes I wish I were on death row instead of having metastatic cancer.  Frighteningly as it seems it may be a lot easier than living in this body that creates  this jail and causes this lack of freedom.

I suppose it’s not all that bad. Death in someways is the biggest jailer of all. We lose our freedom to be here with our family and friends. We lose our freedom, as far as we know anyway, to do anything wonderful and to be with the people that we love. Yet we are strong and beautiful no matter what has been cut off or cut out of our bodies, or how deep the  cuts go in such painful and violent surgeries and therapies.

But there’s an upside to all this. I must believe things aren’t so abysmal. And it’s not so much that freedom been taken from us. We also have freedom from certain things, too. We  have freedom from people walking all over us, people taking advantage of us, people being disingenuous to us. It’s sad that it took cancer for some of us to realize we didn’t have to put up at some of the crap we used to put up with. So we do have some new freedoms as well. We have the freedom to get in front of the line if you’re not feeling well. We have the freedom to ask for an upgrade on a flight. We have the freedom to ask for an extension on a bill since our financial freedom‘s have all but left us, taken away by the astronomically high price of cancer. We don’t have anymore financial leeway or the freedom to spend any money on items that it might just be small luxuries for ourselves. We’re too busy trying to figure out how to pay for our medications and our visit to the doctor and for chemotherapy and other types of therapy. 

But we do have the freedom every day to wake up the new day and say hello to the morning. And we do have the freedom to walk in the sunshine or in the rain, or in the dark or in the light. We also have the freedom to think for ourselves and that freedom is the most cherished one of all. We can be our own best advocate. We  reserve the right to say yes and we are liberated to say no to what’s being offered to us. So as we get near the first day of summer, which is also my birthday, and the longest day of the year which makes sense if you know me, and as we get closer to  independence day in the United States let’s think about how independent we can be from cancer and from the negative perspectives we may have had prior to our diagnoses. I think about how independence and freedom are absolutely and intrinsically connected in my heart and your mind.

Perhaps use your cancer card this summer to just take a break once in a while. Just relax and remember we all have the freedom to breathe in the air and to love without boundaries. How lucky we are to be alive and still enjoy that freedom.

I Asked

I’m afraid. Not that it’s a good sign for anyone but ascites isn’t a good sign for me – it’s my internal alarm system letting me know my cancer is badly misbehaving. My stress load had gone up and skyrocketed for reasons I don’t yet fully understand. My physical “self” sent a flair up to alert me that I had to make some dramatic changes. I knew. But what‘s holding me back and why had I allowed it to continue for so long? I’m not sure I need to define what the “it” is, but it is definitely the 11th hour and I could feel it. Change or die.

On and off I’d been in the hospital since thanksgiving 2018. Roughly the same time as last year once I’d returned from the Commonweal Cancer Help Program. Looking back in that period with the clarity of hindsight, my need to feel loved and approved of by my partner upon returning from the CHP, and by wanting to transform him and his depression, then going into year three. At Commonweal, in the loving-care of people who needed no invitations to a hug, I’d neglected myself again. How the hell did I do that this time and at what level of self exploration did I need to sink into to find the answer to that mystery is as unknown as a good Agatha Christie Poirot mystery.

I suppose to show him somehow he could do it too, he could find clarity within an almost unbearable situation and even find answers to fundamental human questions plaguing him all his life. I’m a firebrand of calmness. Oxymoronic yet I’m so excited to share everything. My excitement caused him to draw further away for the last time. I’d never really see him again after that. Perhaps he’d lost me and not vice versa. But we could have gone together to the program, and I know if he’d tried we’d be a vastly different couple than we are. But here I find myself: sick, alone, afraid, and as all cancer patients eventually find themselves unable to financially support myself.

In all I’d learned I’d still not fully understood that unless I helped myself to health, I’d not live to see my own gifts fully realized. (Protected gifts by the light around me and had been given as a mandate that I did not carry forward as I was gently blessed and nudged towards about three years ago – more in a later chapter on this story.)

I asked him a serious question around 2:00 am December 15th one day out of Stanford hospital and a first round of Taxol:
Are you in this with me?
Yes.
I mean changes have to be made – I must or my life hangs in the balance.
It always does (snidely) just nock it off please.
Craig I’m serious this is serious.
Whatever.
No it’s not “whatever,” it’s my life.
Oh, just shut up.
No I won’t shut up and you mustn’t speak to me that way.
I won’t speak to you then.
That’s not what I meant and you know it.
As you wish.
What?
As you wish.
I wish you were in this with me it could help you, too.
Just go to sleep.

The word whatever should be struck from every dictionary of human language as it evokes apathy and strips bare the spirits of its joy or at the least enjoyment. I’m not talking, “which sushi restaurant?” “Oh, whatever is on your way home honey.” That’s a perfectly acceptable answer. I hope my need to explain myself to the level of granularity of a tight shot in a David Lynch movie as my own self esteem begins to heal as so often his characters do not. There’s no great redemption in over explication, which simply takes a conversation and mangles a cogent discussion creating an active diversion and leaving one scratching their head over how they wound up in an unrecognizable blathering. Of course it’s easy then to say “whatever.”

Something had just snapped in me and I know if I throw myself into the world something will happen. I will die here in every possible way, but out there I can be saved. I believe that now more than ever. After I woke up yet again to an empty bed, even I can see the required ingredients to form the semblance of a relationship are probably unavailable.

It’s myself – not him – who’s keeping me in this carcinogenic hell where I live on Carrington circle (circle! The irony had escaped me until that moment). I can make a choice to carry on with optimizing my mind, body, and spirit for LIVING or I will die running around a circle of things that never change.

I began reading “Anti-Cancer.” Just having read a paragraph regarding ascites in mice and the case of a Mighty Mouse had pulled my brain out of a fog. It scared me to the point of nausea. I’m going to have to find love, patience, nutrition, a living situation, and give for the sake of my life. The gift was mine to throw away or get busy saving.

Now this is clear as anything had been before. It was time to reload my arsenal and wake up.