How are you?

Cancer is just one physical brick in the wall after the next, one emotional brick in the wall after the next, another pill, another side effect, another loss. The word terminal to describe an illness that kills it’s sufferer, makes so much more sense now. Not so much in 2015 when I was diagnosed.

The beginning and the end points of many journeys use terminals – they’re structures. Buildings where busses, trains, and planes arrive and depart. It feels sometimes as though walls made of strong concrete and bricks are being erected around me. Eventually, I’ll be surrounded by a cancer terminal. It’s a beginning and and ending all at once. A diagnosis and then an estimated time of departure – there’s uncanny parallels. I suppose that’s why in the earlier stages of the disease the word “journey” makes some sense. Once the terminal is built, I’ll have used every medication available and my cancer will continue to progress. Then someone will say, “we’re sorry, there’s no more that can be done.” and then instead of a place I can take off and land from, I’ll use it as a coffin.

My cancer didn’t include the travel to get to stage four, I started at the end. When I was a kid I read the last chapter of the books I’d swallow whole, first. I hated surprises. I also hated to wait fo finish to know what happens to the characters and if the investment of time for my busy kid’s schedule were worth the words. Then if I all the boxes were checked in my mind, I used tricks to forget that I’d spoiled the conclusion for myself.

I suppose it’s my karmic fate that I’d not have to suffer the stages or have a primary cancer. I’m not sure if this is a reward or a punishment. However, the density of my breasts is as stubborn as I still am an always was. I didn’t like waiting for the morning to come – I’d get up happy to greet every day and go to bed late not wanting to miss anything. I remember staying up way too late to watch adult shows. If my mom was home I’d sneak out of my bedroom and watch tv over her shoulder from the hallway.

Still the daytime and the sunshine make me smile. I’m still grateful for them – so unlike the zombies I feel akin to, perhaps I’m trying to get all the living I can possibly get into one shortened life. I know I am up too late. I know I need my sleep to heal. But here I sit writing late into the wee hours of the morning, waxing nostalgic, eyes watering as I cannot see as well as I used to. I’m grateful I paid close attention in typing class and can still touch type fairly fast. My thought stream is faster than my fingers and at times the beginning of the essay has nothing to do with the end. How this parallels my life, too.

When I’m in the hospital, thankfully not in the past two years, I feel treated as though I want to be there. The doctors and nurses take turns telling me it’s almost time to get out of there. Almost time to go home. Almost time to go back to real life. In the hospital time takes on a very different pace. It’s activities divided by naps. I think I could use a respite from life right now. I’m tired.

But what irritates me is the attitudes of the hospital staff. No one wants to spend time in the hospital especially not with stage four cancer. It’s as though I’m in some swanky spa for which people clamor to get an apportionment to stay at or even to get their name on a wait list.

Yet, at times I relish the care – not having to remember to take my medication on time, not having to clean and cook or do the shopping. Someone else to change the sheets and do the laundry. If there were a good shower to be had, then I could definitely use a respite stay. A nice week to not do very much but lay there, write, watch movies, and due to the pandemic, to not see visitors. The mattresses usually suck, but that’s the price for a few days of someone else taking care of those little things that take so much longer than they once did for me to accomplish.

My residual fatigue from six years enduring the side effects of six prior “protocols,” a.k.a. the oncological/ medical term for cancer treatments, lingers long after they stopped working. Residual fatigue is an exhaustion that never leaves my body. Fatigue undermines the feeling of being rested, even after 12 hours of good sleep.

As when I have insomnia, a generally accepted side effect of having MBC, that second wind I get around 2 or 3 pm has a false intensity to it. Maybe this feeling parallels what it’s like to be a zombie. I’m not a fan of the newer kinds of horror movies. All the fear is in your face – there’s nothing implied. Nothing behind a curtain – it’s all right out in front like a pack of green zombies moaning in limbo walking the earth with a thirst for blood and only half dead. Or the walking dead. It’s unlike death row where one might wait their entire life to die of “old age.” I’m not sure what’s worse: to have the chance to feel everything through the natural end of life or feel none of it and die younger and without the chance to know the gifts of aging gracefully.

With the loss of feeling in my hands and feet comes more losses. The ability to carry a glass of cold water back to bed without an ability to quench my thirst. The parched feeling brought on by drug induced diabetes — a side effect of Piqray. “PIQRAY is the first and only treatment option specifically for PIK3CA mutations in HR+, HER2- metastatic breast cancer (mBC). It’s a biomarker-driven treatment approach, which means that your doctor will test your breast cancer for an abnormal PIK3CA gene.” (

With the testing out of the way I was found to have either developed or already had the PIK3CA mutation. Am I supposed to be happy about the mutation? I don’t know how to explain how I feel about it. Because if I don’t have metastatic breast cancer then I needn’t worry about mutating.

• Severe allergic reactions: trouble breathing, flushing, rash, fever, or fast heart rate

• Severe skin reactions: severe rash or rash that keeps getting worse, reddened skin, flu-like symptoms, blistering of the lips, eyes or mouth, blisters on the skin or skin peeling, with or without fever

• High blood sugar levels (hyperglycemia): symptoms of hyperglycemia, include excessive thirst, dry mouth, urinate more often than usual or have a higher amount of urine than normal, or increased appetite with weight loss

• Lung problems (pneumonitis): lung problems, including shortness of breath or trouble breathing, cough, or chest pain

• Diarrhea: I should only be so lucky as I have had the worst constipation of my entire life in the cancer terminal.

In general these last two side effects won’t become a problem for me, but high blood sugar, also known as Diabetes definitely has come to call.

Why in the terminal cancer building does the name of something get changed so its more palatable? It’s not a lesion, but a type of tumor. Metastasis is still cancer. And the rash hasn’t reared it’s head since I was put on an antihistamine right away. Diabetes runs in my family so I have drug induced diabetes. Every Wednesday for at least the next two months until my next PET scan to see if Piqray is right for me – I go to the lab and have my blood tested.

Week one the blood glucose number equaled 88. Where my blood glucose has sat since I was diagnosed with pre-diabetes about 10 years ago. Diabetes runs in my family, and I informed my doctors of this, but it was something they refused to hear for some reason. As soon as I heard that it could cause diabetes, sugars and carbohydrates were cut from my diet as fast as I could. But it’s not enough; diet cannot control it this time.

So I’m on metformin. Metformin also has side effects. One is reducing kidney function. Of course my blood work shows reduced kidney function, which concerned my oncologists. Week two my the blood glucose rose to about 180 and this last week my metformin was doubled from 250 milligrams to 500 milligrams when it shot up another 40 points in a week. If I were bowling, my game would be improving quite a bit, but I find bowling boring and I find diabetes alarming.

Theres’ nothing all that exciting about bowling. I’d rather be bowling right now than dealing with cancer, and I’d bowl for the rest of my life if i could get rid of stage four cancer by bowling every day. Covid keeps the allies closed so it’s pretty unlikely that I’ll even get to try out such a stupid theory for a very long time.

One morning, I lay in bed and the oddest feeling came over me – I could feel about 10 people thinking about me. My phone went off about that many times. Maybe there’s more to it than we can know yet.

But up until today that healing of the collective love of so many was overtaken. I feel so heavy it feels like I’m wearing cement leggings. I’d love to feel that powerful gift again. Maybe it’s a matter of opening up my spirit. Maybe tapping into it again will lighten things up – I hope so.

I’m Fine, Really

I’m not going to say

“oh you’re so strong”

That you are,

but it’s just one more thing

left on your plate

Without a fork or hunger.

Eating alone,

salting ourselves

Adding my advice

Worth less than a penny.

Freedom comes along

As a hitchhiker sitting

Beside my expectations.

I leave you with a present

A book written by a friend.

Accept a recommendation

As my way of weighing you

Down with another tome

Thick as a tombstone

And as quick of a read.

“Don’t wait.”

A statement under

My name and 1965 to

The year I died.

At least some good

Advice for anyone

Who just might pass

Or come to visit

The leftovers of my spirit.

For paying with respect,

I may as well give back

Something in return.

Donors deliver livers

Like pizzas these days.

So wear your glasses,

If your eyes tire easily

Meet me to discuss the

Old author’s intention.

I’m light with giving

You’re worn down with

Gifts. Our weakness shows

Through cracks and creases

In our faces – they were

Laugh lines once in the life

Before those thieves named

Virus and disease.

Like urban elm roots

Escape the cement

Moving the plates

In natural tectonic fashion

Inflicting damage

To a city street,

or to a bridge
There’s no escaping

what has no warning.

Tripped up and stumbling

Looking red faced and

around hoping

no one saw my fall.

But nature captures our

weaknesses and the tree

pruned and measured

by men with sharp shears
prevention from taking down

the lines in the air

carrying our necessities

through IVs to our houses.

What does us good also

kills us, so I’ve heard.

The tree bent over

in laughter at the unsuspecting

pedestrian who dropped a

bag, sending oranges

rolling down a hill along with her self respect.

Embarrassment rains

unbearable tears.

And how are you, really?

Take this secret,

keep it safe for me

along with all my faith.

But I can’t complain.

How unfair of me to think

about my own pain.

Grateful. Mindful. Happiness.

Take the book as my gift.

It was nothing, really.

Nothing really at all

I confess.

What’s on your heart today?

Leave the heavyness
On the floor beside you
And let air pour in the door slightly open and without loss
Tell me what weighs on your heart.

Nature herself laughs and claps
With thunderous air. Leave your cares
Beneath the eaves and breathe
Inside a forest where you litter
The needle bed with despair.

Allow a friend to sit a bit, just a spell,
Without knowing they’re too close - uncomfortable, hidden in your space.
You know that strange feeling better than black ice.
Unexpectedly, a hand lifts to your cheek
Feel the warmth of surprise.

Who’s to say you didn’t get enough done
Or too few fed today. Fruitfulness forgets to smile
Productivity can’t stand your tanned cheeks
Bright with the sun’s slaps and pinches
Punished for every hand not wrung with worry.

In tombs with spelling errors in the epitaphs
Written in alphabets from the class
We skipped that spring when nothing
Not the rain or the tilted statues
In our overgrown gardens mattered.

What’s on my heart? Did you question
Or simply forget to ask you as you implied
I might dance away from this house,
Where in my delight I fed your soul
With the leftovers of the moonlight.

Hearts and Bones, Hope and Stones

Monday at 4:30 my appointment began after a round of bood tests to insure my platelette count prevented me from “bleeding out.” A caring, attentive nurse practitioner at Stanford conducted a procedure to remove abdominal fluid, in which escaped cancer cells floated like cruise ships in a pond. My tummy, hard as a rock prior to the paracentesis, softened as the pressure on my organs, rib cage, intestines and diaphragm eased into a very sore bruised feeling abdomen.

Probably the 10th paracentesis in five and a half years, the fact of more ascites fluid drained from my abdomen may indicate metastasis unseen by the most recent films of June, 2020. Now we, (the radiologist, my oncologist, and me) can see if there’s really spread to any unknown abdominal areas. I may also have a new “lesion” (read: tumor) on my L4 vertebrae and I’m in some pain but nothing more than I’m used to. My girlfriend drove us three hours each way to Stanford.

Last week she had delivered to my house: a few years old barely used spa tub – a gift beyond words to express my gratitude. I couldn’t wait for Craig to fill it up and for us to submerge our bodies in the warm, healing water. This hot tub isn’t a luxury, but therapy for me on so many levels. She knew our new, slightly off grid house had no deep tubs – for all its spaciousness – allowing me to relieve my pain and help me sweat out the poisons from my targeted and not so targeted cancer therapies. I am in more pain than usual from the aromatase inhibitors I have to take daily. Taken along with the new estrogen and progesterone hormone receptor metastatic breast cancer wunder-drug, Verzenio, is my fifth and current protocol. We hope. We hope. We hope it works.

I took my first dip in the tub last night and it was heaven on earth.

Hope and Stones
On another note, as I entered a few places on our trips to and from Stanford, I truly wish people would realize that our lives matter too and their refusals to wear masks prevent people from access to healthcare and clinical trials that have to be postponed or even canceled due to the risk of infection from Covid.

It’s the numbers of dead that won’t be counted because it’s not a direct but an indirect result of lack of infection prevention. I wish we could see some real death toll numbers as that indirect result of Covid and the direct result of selfishness couched in “rights” of people to choose not to wear masks and stay at home just a little while in the grand scheme of things to stop this virus from spreading in our country. I don’t think the writers of the United States constitution had that in mind when they discussed the rights of the individual to determine their own fates, and it’s disturbing to see it in action.

I noticed a little girl maybe 6 years old in a cart with her mom not wearing a mask at a grocery shop last night. The lack of protection upset me – you’d think that parent would want her child protected and to protect others should she be a carrier. A broader picture representing this sad state of affairs. We do not have this under control.

Let these experiences open a new conversation, rather than shut us down and create another fight, another us versus them argument. Leave the violence for the ignorant and the voiceless. For we with terminal illness openly and frankly discuss death. The ending of life as we individually experience what is inevitable to all who live. We must adjust our hope as a society now. Hope is a mandate not an immovable emotion.
Having had front center seats to the deaths of people who’ve been the closest to me gave me an immeasurable gift in the common sense of meaning or value. Each changed me in a different way; changed at the level of the soul. I feel the soul is where hope persists inevitably. And with that in mind how can violence erupt where love also persists?

In the Jewish tradition when visiting a grave in a cemetery one leaves behind a stone. Not flowers. Those die. But the immovable stone – its also something on which we can build a path. And maybe there’s some truth to that. We build a path from stones from birth to death. We can not go back and change it and we do not know if tomorrow will bring us another stone on which we can continue to walk.

Living life in the now, in this breath, allows death to be a part of life without fear or loss. We can step into the unknown and float away our soul free of the body of pain and suffering for some of us. And the stones left in this world we can see as simple reminder that we were here.