Where’s Your Mind at Night: A dive into cancer and insomnia

Terminal illness effects the mind in some not so obvious ways. If you’ve got cancer of any kind certainly you’ve done deep, soul searching, looking for your own priorities and answers to life’s big philosophical questions. Yet even if you’re not terminally ill, there must’ve been times when you thought about some deep stuff, right? I mean thinking is usually what keeps us from sleep. But for those who suffer from many illnesses and not just cancer- take fibromyalgia for instance – the discomfort from pain and aches keeps you from getting comfortable enough to rest your mind and body.

Then there’s a very big mystery of why beyond these two major reasons we with stage 4 incurable can have insomnia. Nights not spent thinking about anything in particular and not physically uncomfortable, but just laying there unable to sleep for no apparent reason. I’ve not seen any science to study this form of insomnia. I have a guess that we really want to not miss any opportunities to live while we’re alive. Does sleep really keep us from those precious hours we could be doing things we can’t do when when are dead? It’s important and restorative for our bodies to heal and our minds to write memories on the big gray hard drive.

Sleep is for the dead, or so I’ve heard it said. And then there’s the little issue of wanting to experience life well rested and in a clear state of mind. Go figure – another paradox.

I’ve spent countless hours in deep meditation. On big questionas about mortality, about the importance of “things” VS. “people”, about letting go of unimportant emotional baggage, and forgiveness of myself, others, the universe and whatever my conception of a spiritual entity is like. I’m not going into that one. It’s been wise to not bring the r-bomb onto the blog (religion is best left with the p-bomb -politics which DO KEEP ME UP most nights because our beloved democracy is coming to a quick end as is my life – with a very screwed up, monstrous, interminable metastatic thing in a house it does not belong inside killing the very body that keeps it alive – it dies with its host).

However, just the simple fact of knowing my disease will kill me someday, that death is not some vague notion of inevitability, my thoughts turn more to dying and what plans I can and cannot make. I assume us stage 4 terminal endurers have these thoughts more often than people who have stage 0 through 3 “curable” cancers. But you tell me in the comments section below since I can only assume what I do not know.

Here’s a list of some things I think about throughout the course of a night:

  1. Should or shouldn’t I purchase the larger, economy size of soap, shampoo and conditioner? Will I survive long enough to use it all especially having really short hair now?

  2. I wonder if should subscribe to magazines or continue buying them off the shelf.

  3. Is it worth it to buy a new bicycle?

  4. Does my will still make sense?

  5. Should I visit the place I want to be naturally buried under a new born redwood tree in the Santa Cruz mountains or will it make me too upset? Shall I just instruct Craig to do what I want rather than choosing the space in advance?

  6. Do I want to reconsider becoming a marble instead? There’s a company that will take your body, burn it without polluting the environment and mix it with glass to create a beautiful paperweight or set of marbles from your remains. Pretty neat. You can be carried in your widower’s jeans’ pockets along with his keys.

  7. If I’m a marble and Craig dies what would happen to marble me? Will I just wind up in some antique shop along with a bunch of other marbles?

  8. Pink Floyd or Led Zeppelin?

  9. Watching a movie or rereading a book seems heretical.

  10. Put the ice cream down or finish this here pint… Oops. Don’t ask for any it’s done.

  11. Did I choose the right adoptive parent and back up parent for my cat-son Simon?

  12. Can I haunt people after I am dead and if I can who should I haunt?

  13. Conversely I’d really want to visit people I love. There’s some serious practical jokes I’d love to play on my OCD husband.

  14. And I’d love to torture his ex wife who spent years trying to break us up and also tells my stepsons I don’t really have cancer I just want to sponge off their dad and I am a gold digger. I wish. I have some lessons she needs to learn in my opinion. And who better than someone she haunted while I was alive!

  15. I’d love to see a few more places and have some experiences yet to do. The northern lights is one. Going back to Paris and France generally and traveling all of the UK. Meeting the people I’ve only been able to interact with on my blog or social media in person to secure my friendships and make them whole. The UK trip will help a lot with that one. There’s a lot more but these stand out.

  16. Can I rent an RV and drive around the US and see my old friends one more time before I die. I don’t have the money and I don’t know if I’ll have the time. I wish they’d be able to come see me. But if I’m not worth their time and money…well should I make an effort? I’ve spent a lot of time filling and u packing a lot of emotional baggage on this one in particular.

  17. Should I get a walk in bathtub? Will that make me an official senior citizen?

  18. Do I continue to keep trying some new somewhat tangential hobbies to my current hobbies? Will I have the time to be good at anything else other than what I’m already good at? Like gardening and growing food for us – there’s a lot to learn and who’d tend fo it when I am dead?

Whats on your list of things that keep you up at night? Can you relate to my list and my thoughts with regards to why we don’t sleep beyond the two big ones – mental and physical pain?

I’m pretty upset with a few people, several companies especially AT&T, and excited about a few activities and people who will visit in the next few months. And nervous about my upcoming radiation treatments on my vertebrae.

That’s just today’s mind antics so on that notes I’m going to go ground myself on the soil outside then go take a nice long bath. Fuck all the chores today. And fuck you cancer.

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.

Viruses and Assholes

Assholes. There I said it. You who were too selfish to even comprehend that viruses beg for crowds to strengthen them. The more the better, and you just couldn’t stay put for a couple of weeks to save humanity. 3,000 people in the United States are dead as a result of COVID19, as of today March 30, 2020, or so we’re told. If there are too few people to take hostage the virus will become less deadly because a virus, like a parasite, won’t kill off all of its potential hosts. To survive with less the virus weakens. So with fewer to infect so it can remain alive only far less deadly. Much unlike stupid metastatic cancer, which will eventually kill its hosts.

But such assholes probably won’t die. The ones who will die are the aged and the infirm.

I fall into the category of “infirm.”

I have one of the diseases metastatic cancer along with diabetes, AIDS, and other lovely human killers have repressed the immune systems of the human beings who walk around with those assholes. Those jerks who couldn’t stay home just for the sake of their fellow Americans to avoid such an imminently high death toll.

And the slow burning down of our Economy is their fault, too by the way.

Having metastatic breast cancer means jumping from one therapy to the next until they no longer work. Right now the very Immunosuppressive chemotherapeutic medications ingested into my body to hunt down cancer cells and save me, could kill me. Good luck to me for trying to find a lab willing to draw my blood for the four major blood tests I need to know if the Verzenio and aromatase inhibitors are working and if I’m suffering from liver or kidney dysfunction. Oh and how bad my white blood cell count really is right now to see just how open my system is to this corona virus. I’m not too happy to have been home now going into the fifth week.

I had two telemedicine visits last week with my palliative oncologist and my medical oncologist. My palliative oncologists and I are just in the “getting to know you” stage of our relationship. He’s a great guy, and I hope he lasts in the role longer than the previous four I’ve had at Stanford. I don’t think palliative medicine is still taken as seriously as it should be for those with terminal and chronic illnesses. But what a great time to educate yourselves if you’re at home like I have been.

Dr. B and I had a laugh or two on our call. He’s not as techno savvy as he will be when this is all said and done. I hope for his sake and mine he stays well. He’s in the “aged” category and I am in the “infirm” category so we run similar risks although mine’s a bit worse than his but he was in clinic doing our call. I need some ascites fluid drained off – the new protocol I’m on doesn’t seem to be getting rid of it as we’d hoped. I have a hard time breathing and I can’t button my jeans and the rest of me looks thin. It’s making my back ache where I had the L5 stress fracture in my lower back. That was two months ago when I had my CT scan. It’s showed a slow accumulation of fluid and it needs out. We will try to find a place to have it done but chances are I’ll have to go to the cancer clinic – alone. No use anyone else getting sick if I do.

But I’ll do what I have to to keep myself alive and well as long as I can. Every time Craig and our friend S leave the house they are the only ones wearing masks and gloves. They assure me the looks they get are like two men about to commit a crime. When the opposite is true – those assholes who refuse to take this situation as seriously as it should be are the thieves and crooks. The thieves of lives and the crooks of humanity.

Every time they come home from the grocery store, the post office, or the pharmacy and the occasional trip to the hardware store – we procure most of what’s needed online and the rest we try to buy from local small businesses when and if at all possible – they remove their clothes in the garage to be washed later and shower in our downstairs bathroom. They keep me safe.

I do get out for my walks and for some much needed gardening, too.

Our friend has been staying with us for the past three weeks and knows once he leaves the house he cannot come back due to the high incidence of the virus in the Bay Area and specifically to his neighborhood. He is the opposite of an asshole: the Yiddish word mensch comes to mind. He’s here to help complete what’s necessary to bring our house up to move in ready. It turns out our dream home wasn’t as move in ready as we were led to believe.

So people reading my blog aren’t likely in the part of the Venn diagram labeled assholes. And there’s a few who should stay home or face a ventilator and take a hospital bed away from someone who couldn’t help it, like a nursing home resident. If it was your mom or grandmother I doubt you’d think – well they already had their lives…fill in your own blanks. I know Americans. They love their freedom, but freedom at what cost? The cost is detrimental this time. And to those who least can afford a virus as deadly as COVID19. I don’t care if the conspiracy theorists are right and it was unleashed by the Chinese on an uprising in Wuhan province. I don’t care if it came from Mars. I’m a native New Yorker and I know the venom from the fangs of the rabid individualists. It’s deadly too.

But hear my plea. Don’t, for the love of those you love, take risks on our behalf. Don’t be an asshole. Assume no one can fight off a very strong virus. And don’t assume you don’t have it right now. You might. The massive campaign to politicize this virus is only now becoming apparent. Shame on those assholes, every last one of them. But here I sit, happy in my bath of green tea, macha powder, frankincense, and Epsom salts. I’m lucky to have telemedicine, immunotherapy, people who love me, and a house far from the madding crowds. And if you’ve got metastatic cancer and need to get away for a couple of days drive in and stay. My house is open to you.

But the rest of you – don’t be an asshole. Stay home, please, because this too shall pass and all will be well after the dust settles. I just hope I’m still here to see that first sunrise on that first day we can all breathe in the same air and heave a collective sigh.

PS The photo is of three donkeys who live up the road from us. They look rather unbothered by this fiasco and I take solace in their existence every day they come down by the fence when I am walking by. They see me and trot quickly down to say hello to me no matter where all three of them are at that moment. Craig said they don’t do that when he walks by without me. They come to the fence and shake their manes at me as though they’re inviting me to hang with them for a while. Maybe next walk I will, too. They’re asses not assholes. 😜