Connections: The impact of terminal illness on relationships

Who wants to die without seeing everyone you’d want to see and saying all the things you want to say to the most precious gifts life has to offer: of friends you make along the “long and winding road,” to quote Lennon and McCartney. I’d venture to guess very few people, if anyone, would pass up such an auspicious opportunity. Or would they?

Receiving a terminal illness diagnosis, like metastatic cancer, can cut the human heart out like a serial killer with a hunting knife. Stunned we watch in horror as in his hand your life quickly fades to black as he shows your heart to you, blood through his fingers right before the light in your eyes burns out, extinguished forever.

Why do I imagine such a vividly gruesome metaphor for what should be a series of happy reunions?

A day in a life

Ahhhh. My bath time. The time of each day when I reflect on my self care and I give myself a physical and mental check up. Some time to meditate, listen to an audio book or music or both. Or do a Zentangle focused drawing tile. If you’re not a visual artist like me but want to learn to draw, try the Zentangle methodology. It’s great for concentration and for relaxation and it truly improved my confidence in my ability to create hand drawn artwork. I’m even proud of a few of my pieces!

Stumbling into my peaceful bath ritual came The C. Innocent as the slightly autistic driven snow, he offered,”If you need to travel to say goodbye to some old friends don’t worry, I will take care of your travel costs,” offered C last night as I sat in a hot bath. I sat with tears falling into a bathtub of steaming water. Such a thoughtful gift brought about a tearful response. He tore at my heart while giving with his own. He left me alone shutting the door, quietly walking away, feeling upset and confused.

Why did I cry instead of showing my gratitude? His generosity shattered me into a hundred little shards of painful fragments. Pieces of sharp broken promises of a future. Another day in my life, post-terminal illness diagnosis. I’d heretofore avoided the subject of visiting old friends. There are people I frequently daydream of seeing again, who pop into my minds eye along witht the feeling that I might not see them befor I die.

Relative mortality survival time with statistics - but I try not to follow numbers since they mean nothing to anyone’s individual cancer.

*See stage 4, that’s my survival chance beyond five years but I could never play by the rules so these numbers are mere poo flung out to scare me from Dr. Mary’s monkey cage. It’s been four years and two months since my diagnosis and likely much longer since I’ve had my chance to begin with before it went raising my body like a pirate.

On our way home

I hesitated due to the ravages of chemotgerapy to visit with an old friend who came from Paris with his 22 year old son to the Bay Area. He and I last saw one another 12 years ago when he dropped me at the train station in a small town down in the southern mountain region of France. We were not too happy with eachother at the time. But maturity and sense took over in the span between then and now. Meeting him for an hour before he had to check in I was not nervous but excited to see him.

Funny how cancer gave me a strange confidence in knowing it didn’t matter how good I looked. It didn’t matter what I wore, because neither of us will remember our relative fashion sensibilities as the highlight of our brief yet meaningful encounter. We will recall how it felt to hug one another and to feel the connection of a true friend and the kind kind of love that’s without beginning or end.

Moved to feel the connections we make along the way with those who travel along life’s path with us, authentic and deeply touched and indelibly changed by that very beautiful place only we know while joined with another spirit. Through the years we expand on our experiences together and fold them in on our consciousness. Our expression then takes on a higher power, two squared if you will. We better ourselves because of an instinct to find other souls in a sea of possibility. This I believe is where our instincts must take over.

I trust my instincts more than ever because sometimes that in and of itself is what was changed by another person. The innstinct infuses us with life and light and love. For what is love but the purest form of human instinct.

Ticket to Ride

Try as I could I couldn’t but cry for being happy to have seen him… knowing it may be the last time. But perhaps not so until we meet again…I am here and as long as I am alive there is hope. With hope comes possibility. And I have hope there will come a day when we can hug again.

Yet we can only live in this moment. It’s all anyone can do. And I ripped the bandaid off of my fear of the next time I see an old friend, perhaps being the last time we may see eachother. Maybe C’s right and it’s time to get traveling and live again to see those people who have meant so much to me over the years, and to the person I’ve become. Because whether or not they know it, I would never have the strength of spirit to dig up the tenacity required to go the distance with metastatic cancer.

Never underestimate how you’re loved. It’s more than you think and never too late to find out.

A Promised Christmas from a Talented Writer (and city planner)

Please check this out – I found Brian a few Christmas times ago via his insane city within his house. You’ll not regret following his blogs or buying Brian’s books. His humor brings a crooked smile to even the sweetest of faces.

Plus he’s an awesome friend with a wickedly smart writing style.

sigh thank you again and tequila body shots to all my friends! Huzzah! Even if you got no boobages like me!

I will pray for you

If I hear you say, “I’ll pray for you,” I’d like to know what prayers are enchanted, spoken aloud, spoken to yourself, written or expressed without the consent of the NFL or the Roman Catholic Church. I’d love to sit quietly and hear the truth to God, the universe, and the restaurant at the end of infinite space and time (a conundrum as rich as a prayer itself.)

But I don’t hear anyone praying. There’s no cancer Mecca where everyone faces east at a specific time of day to pray. If your words are true, come sit with me and share your prayers. Else, please don’t say you pray as a good way to design an end to a conversation in which you’d rather not participate. If I can handle nearly every night in the hospital since thanksgiving up until nearly mid December, it’s perfectly okay not to pray for me or say you even think about it, but maybe you do. So, my heart says, “leave it alone and don’t look a gift rabbi in the mouth.” But I can’t let this one go.

How’s oncologist’s prognosis?
My oncologist looks wistfully at me as if he’s in awe of my state of being alive. I imagine the adjective “whistful” hasn’t been applied to him since a love letter from his now wife of over 25 years sent back in medical school in as many years ago. I love my oncologist for knowing he doesn’t know what to say. For knowing he really wants me alive. For knowing in my heart the hope in my eyes reveals itself to him. He dares not crash it like the crystal palace so burned to the ground almost symbolically before the beginning of Hitler bombing Britain, before Chamberlain said I quit, and before the Lion, Churchill came to pray, too.

Such as upon The Duke of Windsor’s abjuration of the throne for a twice divorced American social climber extraordinary. Yet she remained until his death some 30 years later as his wife, and certainly more interesting than a sniveling ex prince. My doctor would no more give up on the throne of my health than I would. So I know when he prays for me, and he does, I needn’t listen in because he brings them to me like letters tied in bows and looks at me with a sidelong smile saying bless you and keep you and let’s get this thing, huh? I’m his miracle kid.

My palliative doctor: She’s gone from the Stanford practice and my new palliative oncologist basically types, nods, and hands me prescriptions for medication. That’s why I thought I’d ask someone I trust. My old palliative had recommended CBD to THC 3:1 but that was before taxol. Now I’m on my online groups and everyone has a different opinion but no one lives here in northern California. It’s kind of a strange hypocrisy that everybody does it but they don’t say they do. At times my stomach is in so much pain even compazine doesn’t help but smoking marijuana does. It’s a crap shoot and my friends generally help but this is beyond what they know or want to understand.

So I tend to reach out when necessary to people closer in situation and like I said, who I trust. Marijuana’s legal, but not regulated for promised content of purity so there’s no standardization. I’m essentially on my own doing what I think I need.

The good news: I’m incrementally the very slightest bit better each day. However the chemo is very very hard on me – I cannot say less good about this radical pathway to getting better than that. I’m driven to believe there’s a better way. If the patient is gone, what’s the point of treatment. Mind you if it’s saving my life I’m not complaining.

How deep is your love?
Craig’s busied himself on home improvement and seems to have pretty much recovered from his depression finally, but he’s still somewhat tenuous. He’s unable to handle illness and I’m not as utilitarian as I once was – the need and the ability are both gone so we shall see what the future brings, but for now, my friend is coming the day after Christmas to help me until the 6th or so and my old housekeeper insists on coming and cleaning and helping me with my online shop stuff once a week for nothing. I insist in paying her something since she’s not responsible for the cleanliness of my home. I have angels in my architecture peering out – she’s one of them. And she had to promise me to please quit smoking. And being a good sweet person she aims to do it.

I have several good friends who check up on me too. I’ll probably go to a friends for Xmas dinner instead of being alone. I’m saddened that neither of my stepsons have asked about me and I haven’t heard one peep from my younger one, who really surprises me. I don’t even have the 19 year olds new phone number – I’m not asking either – I spent 10 years raising them. But I know it’s either not even on their frontal lobes or it’s just like with dear dad, if I don’t have anything to give why bother?

Last year I had loaned the younger kid over $500 for Xmas and for tickets to a concert he took his girlfriend, whom I’m glad to say he’s still with, and he couldn’t pay me back. I forgave the debt, but since then he seems even further away. Like everything and everyone seem a little more distant and like a good diaspora shouldn’t come return again. But it was never this way until this year and now zero words at all get exchanged. I know nothing changed as far as how I feel but granted a year and a lot of water has traversed the spaces in between and I’m simply the undeniably dying evil stepmom now.

Always something there to remind me.
People cannot just pop over anymore, although company keeps my mind off my cancer. I was supposed to go to LA next weekend for a Byron Katie New Years cleanse to which she gave me a personal scholarship to go but I clearly cannot. I wish that I could and was in better condition to steep myself in healing practices and guilt releases of the most obstinate kind. The kind that wrestle your soul until the bitter orange end gets bitten off at the navel and just as you’re ready to say, “I get it now!” You’re gone.

There’s a certain audible cruelty with this tumor in my peritoneal cavity. At least we know once you’ve got metastatic it’s no lie – you can be fine today and dead in a month. I believe this pain is a universal nudge for unclasping my hands, untying my blindfolds, seeing what’s realistic, and slowing the hell down a bit. And I bit off way more than I could chew. So I’m sorry the cat really had my tongue.

Each morning I wake up…
If you say prayers what are they? Are the words biblical, just a short thought of something bright and healthy, or vibes of happiness in general? What, if you don’t mind sharing those less personal in nature, do you pray for when you think of a sick friend or relative? I would appreciate if you’d please leave a comment. I’d really love to hear from you, and as cheeky as I may sound, I know it’s serious business. That’s why I’m slightly veering off the ramp towards Offended and off the road when I’m blown off of a text or phone or in person conversation with the words “I’ll pray for you.”

Will you?

Oil and Water: Cancer and Friendship Don’t Mix

What causes friendships and metastatic cancer to repel one another like two magnets? The metastatic breast cancer diagnosis I received three and a half years ago sent most of my friends and family scattering like roaches under appliances in a suddenly lit kitchen. In our dark hours we expect relationships to hold us like a hug, not release us like dead rodents from a hawk’s talons. Roaches and rodents? Can you sense my residual resentment? Yet I must admit, my own qualities that once made me a good friend prior to my diagnosis disappeared right along with those long-lost friends and relatives.

Which way did they go?
I’ve arrived at two possible explanations for my perception of their disloyalty. First, some expressed disbelief in my stage four diagnosis (I just don’t look unwell enough). Second, their inability to hold, like Hamlet held up Yorick’s skull, a memento mori in their hands and contemplate their own life and inescapable death. Both explanations require the understanding that metastatic means incurable, and finding out that I have metastatic cancer started a timer set to explode in my body on some future expiration date. Some people have admitted they just cannot handle losing me and so opt out early from my life to avoid the pain of my death. This makes little sense seeing as how none of us really know when or how we will not awaken from permanent unconsciousness sometime in the future.

So what’s my excuse?
There’s a few reasonable explanations to rationalize my own poor qualities as a friend. The very basic qualities required to maintain close, loving relationships don’t align well with lapses in memory, time warps, and hours stolen by appointments. Not to mention the side effects of my medications and the illness’ own special effects on my body and mind, wreak havoc on my ability to make any long-term plans. Sometimes, I disappear into a dark place where no one can reach me at all. It comes with the territory, though I bounce back quickly from the depths.

No wonder I must look like a walking can of Raid ready to spray mortality everywhere I show up. I’m not too hard on myself when I admit I just suck at remembering any appointment that I forget to make room for in my near-empty calendar. My daily to-do lists look like vague carbon copies of one another. If not written down and placed in my wallet or in my notes on my iPhone, the “do’s” don’t get done.

Even still, the lapses in time and how much longer it takes me to do even menial tasks than it used to, eats up the daylight before I know it’s nighttime. By then it’s too late for phone calls I meant to return to people who reside on the other side of the Mason-Dixon Line. They get pushed out with a quick apology text message until the following day, or week, or month. Perhaps it’s even too late in some cases to save relationships that once were dear to me.

Another problem I perpetually try to solve is adopting a new way to dress to allow for the changes in my body including lost weight, lost cleavage, and swollen legs. It sometimes takes an hour to get appropriately dressed for the day. Makeup, which I wore little of prior to systemic cancer, never took this long. Dropping weight and the pain from neuropathy have led me to waer flowy, hippie chic garments, which grab attention and compliments. But the time it takes for so many costume changes and the one-way arguments with my closet could be better spent having lunch with one of my good friends. Or returning a long overdue call to my husband’s best friend’s wife or my stepsister. I love these people dearly, yet they’ve got to feel like I’m some self-centered asshole by now.

For the attention span challenged, a list!
A short list of new shit qualities brought on by my interminable disease that eat away at my time:
1. Insomnia
2. Waking up past noon (see #1)
3. Doctors and medically related appointments
4. Husbandus interruptus
5. Strange eating habits and mealtimes
6. No alcohol consumption
7. Chronic lateness
8. Fiscal challenges
9. Visible physical changes
10. Prescription medications and their side effects
11. Chronic fatigue
12. Chronic pain
13. ADHD causing #12 to some degree and exacerbated by my cancer
14. Constipation and too much time “en pot”
15. Discussions about #14

The list reads like a print out on an old dot matrix printer. It goes interminably on and on. The list of my friends, however, shortens in direct proportion to my cancer-related excuse list.

You’re My Best Friend
My husband once was my truest and most trusted companion and confidante. We had happiness and deep physical and intellectual compatibility. Our goals and values pretty much were sympatico. Now, we are simply trying to find new footing after his long bout with depression and the emotional backlash against my cancer. His dysthymia seems to have lifted for the most part with the exception of post depression fatigue. The backlash erupts with yelling and ugly words from time to time, sending me tearfully away to wonder why the fuck I am giving up my truncated life to be with him.

We try to mindfully navigate the difficult pot holes and bumps on the twisted road we find ourselves fearfully driving. We seek the hopeful sparks of joy to reignite our once close and loving relationship to find a future that works for us both. The good and the bad with my husband ebb and flow leaving me without intellectual stimulation and regular hugs, so my requirement for outside interactions changes according to our stability as a couple. If my needs don’t get met for long stretches, the loneliness becomes nearly unbearable.

It’s a paradox, while some couples make it through, others blow their partnerships to pieces like a tumor being shot with radiation. Usually the men cannot handle the loss or prior to loss, some cannot make the adjustment to becoming a caregiver. It’s no one person’s fault, per se.

Mea Culpa
I forgive anyone who could not go the long haul with me as they fall out of my tree of life. I also try to forgive myself for the above growing list of shitty excuses. Currently, I am attempting to reach out into the metastatic breast cancer community of people to find others like myself and who require no explanations or excuses. However, those I meet in social media or through this blog suffer from similar problems and time sucks just like me. And they live in every part of the country and the world making it difficult to grab coffee. The conferences coming up may provide me with a few good contacts from this neck of the woods. With the caveat that I may or may not be able to attend for one of the reasons on the short shit list.

In the meantime, I try my very best to leave a little of myself with people who come into my life and those who regularly check in on my well-being. I do hope I can reconcile all of this sometime soon. In the spirit of friendship let me apologize to those I may have inadvertently alienated and ask forbearance from those who remain.

Thank you for being a part of my difficult life. You mean more to me than you know.