Friday, June 30, 2017

Practical magic

Practical Magic

I’m keeping an ever growing list.

I could title it: Things we took for granted.
It’s really my prep list for going home, which is still in the air as to when.

Daily, it seems, I add something to this list.

People have generously sent amusing books and offered to bring books. What I find myself doing for hours is researching the neutropenic diet.
It’s a shame, all the cancer fighting things that will keep his body healthy, he cannot have. I’ve run to the market buying flash pasteurized smoothies, coconut water, whatever I can to help him along, only to find out he shouldn’t have them. No cancer fighting blue berries. No kale. No walnuts.

I pepper everyone who comes in our room with questions about this cheese or that juice. I continue to think he is pregnant, as he is not allowed to eat any soft cheese.

I bought a counter top dishwasher on line. I love doing our dishes by hand, but needs must. I’d feel much better about the dishes going through a wash without using a dirty old sponge. And this is one of those practical ways that I could enlist help. I knew my friend Robert would be able to help me sort out which was best, and so I asked him. That’s the beauty about community. You all have answers to our questions; we just need to ask them.

I think we may have to view John Travolta’s The Boy in the Plastic Bubble movie. If I could just wrap Dom in a protective bubble. Someone sneezed about 10 times outside our door, and I flew out of my seat and nearly escorted them out of the hall by use of force.

I’ve scouted out on line the medical supply stores in town. There’s a few items I’d like to have around. Like masks. Definitely masks. And to tell the truth, I’m quite jealous of his powder blue cinch waist pants. I’d really like to stash a pair on the way out. I’m not so jealous of the gown. While it does remind me of my Grampa’s pajamas, as much as I loved my Grampa, (dearly) I’m not in love with the nautical green stripes and blue medallions. The gown can stay.

I’ve pictured myself making a Costco run, and getting a huge pack of paper towels. I can imagine we’ll go through these. And, if you haven’t picked up on it already, we’re not big consumers; we generally use cloth rags and napkins. I once watched a friend I was staying with use an entire roll of paper towels in one day just going about day to day business. As she cooked dinner, I could hear the tear of the towels incessantly. An entire roll in a day. I nearly lost my mind. And in a matter of days, that will be me.

We have a paper towel dispenser in the room that I just wave my hand in front of and out pops the paper. I kind of wish I could install one of those at home. This one dispenser has provided me with plates, napkins, mops, hand towels and counter wipes. Well, not really, but that’s how handy paper towels are.

I’m also in love with the flimsy little water pitchers that they keep filled. There is a disposable insert for the pitcher that conservation Cass would hate, but germ-phobe Cass says yes please. It totally feels like something from the dollar store, and yet, the lid never falls off, the water never leaks, it just does its job. Why is this so exciting to me? Because I have a filter system pitcher that always, always leaks and the lid doesn’t stay put, and perhaps I’ll stash one of these hospital pitchers in my bag too. I’ve never been a thief. I’m sure it could be gifted to me via a wink and a nod.

I didn’t even think about it until I read yesterday that well water is a no no. Unless it’s tested every day for bacteria, which, of course, it isn’t. It’s off limits. We’re fortunate that there is a reverse osmosis filter in the barn, so just like the prairie girl that I am, I’ll be fetching water daily.  To put in my snazzy little hospital contraband.


Some plastic baggies to wrap his arm for every shower. Sorry sea creatures. We have to keep his ports and bandage dry. And clean. Just not clean from a shower.

I see a lot of Tetra Pak in our future. A lot of individual packets and cartons. I see a world that is the antithesis of how Dom and I live! But, we know it’s a temporary world of beige food and overcooked veg. Even herbal tea must get approval. Our Yorkshire Gold is on the approved list. Phew. One thing that will be no shock to our lifestyle is no restaurants for 100 days after the bone marrow transplant. We rarely go out to eat, so this will not be a struggle for us. But seriously. 100 days. I just might slip out for a taco.






Thursday, June 29, 2017

Love is the cure


 iphone shot by Dominic
It seems as if we’re treating this cancer in a very old school Christian way. When I was very young, I used to think if I jumped through all the right hoops, was a good girl, and didn’t make too many mistakes, that God would give me the life I wanted. That did not work out so well with me, and I have long since taken a different tack.

Nevertheless, here we are, in a vaguely reminiscent way. I glance down at my notebook at my side. I am writing down everything. Every piece of information goes in the notes. Every name, every drug, every stat, every question. I want the insurance company to know we’ve done everything possible to make all their dimes worth while. Dom is compliant. He does his bit. He takes the pills, the liquids, the directions. He walks with determination, brushes his teeth, showers every day, eats all his meals and hydrates. We search out complementary diets. We are fighting the cancer from every angle. We are in it to win it.

I’ve just attended my first family support meeting. I thought maybe someone would ask the question I did not even know that I had. I would love to tell you all about it, boy would I. But it’s like fight club. First rule and all. One woman gave me permission to talk about her husband’s barking spiders outside of the group. But we don’t actually need to talk about that.

I am itching to talk about fight club though.

What I can tell you, is that when I pass a patient in the hallway, pushing their tree of life, and they smell like an ash tray, it gives me pause. How does one take their act on the road and step out for a ciggy? There’s no place to smoke anywhere near the building. Let alone that you’re not supposed to even leave the Oncology Ward to protect the fragile immune system. It is not my intention to judge the patient, but it just boggles my mind. And I dig my heels in that the the model patient just has to be cured. If only one could be cured on merit alone.

I can also tell you that the term God complex was brought up in context of doctors thinking they are god. And I realize I may have the complex by making our Doctor god. It’s not that ultimately I think he alone has the supernatural power to cure cancer, but subconsciously, that old good girl in me thinks if we impress him with really good behavior, we’ll get to the promised land. The doctor doesn’t notice this. He just listens to Dom’s breathing and feels his feet for edema and is on his way.

As I ponder this reckoning with cultural spirituality, what I really want to say is this: I think what is absolutely healing is all the love and support we are receiving. I am positive that the daily posts from people, the love, the prayers, I really believe it is all part of the cure. You are all part of the process of wellness for our Dominic. And we are both so grateful. Love is the cure.

Wednesday, June 28, 2017

Bon bons all day

I joked with friends the other day that I am sitting here eating bon bons while Dom is out walking the halls.
It’s really not far from the truth.
Under the windows, with the amazing view we heard about long before we moved in here is a chest of drawers. Right next to the bank of 8 drawers is a recliner. In which I sit. A lot. The drawers face the recliner and the top two drawers contain dried mango, almonds, crackers and dark chocolate. There were a few days where I couldn’t eat, just processing this news, this new life, and those days were not my highest functioning days. At some point you make yourself eat.
And then you can’t stop.
I sit in the lounge chair tapping away on the keyboard, and just reach over, slide open the drawer, and there’s a snack. It’s really far too convenient, this hospital living. It’s highly inconvenient for both of us to face a cancer diagnosis, so we’ll take our ease where we can get it.

On the flip side, I am trying to move. I’ll throw my yogi toes on the floor and catch as catch can. I draw the curtain and do some handstands when I’m sure nobody is looking. I have a fear of being scolded for doing something dangerous in the hospital. I’m pretty sure if there’s a place to conquer fears of no one finding me crumpled on the ground from a failed hand stand, a hospital room with people’s heads poking in every 15 minutes is the place to conquer them. But I’m still secret squirrel about it. I also found the stairs. Day one of this whole drama, and a nurse told me to use the elevator to get to my car….so, I used the elevator. It was imprinted in my brain to use the elevator. Once I started crawling out of the depths of trauma induced confusion, I realized, there are stairs. I can use the stairs. So it’s not all bon bons all day. But, I’m still in awe of my man, who dons those wireless headphones, a thoughtful gift, and boogies up and down the halls.

I’m feeling a little more ownership over all of this. This space, this treatment. All of it. I’ve begun throwing things away in the community fridge. I’m sorry, your drippy cartons of stinky days old Chinese food is going. I know you are not coming back to eat it. Someone left Fettuccini Alfredo with the used kitchen fork entirely covered in cheese for about a week. I tracked down someone from the kitchen and asked if they’d like to take the fork. Nope. Manky, nasty business. In the trash it all goes. I just can’t be my normal conservationist self and nothing is safe from my clean sweeps.

There was an entire family of Mom, Gramma and three children, kicking the furniture and looking about ready to jump out of their skin in the family room yesterday. Gramma was ripping things off the shelf trying to get the kids to read a magazine with Barbara Streisand on the cover or play a game. Kicking the furniture was far more appealing. I decided I didn’t need anything at that moment and was on my way.

I also think because Dom is feeling so much better, I have more energy to be irritated. Exiting the parking garage for my daily circle, a woman cut me off turning left directly in front of me, and then just forgot she was driving for a moment. I just sit, staring into the distance, until she remembers she’s actually still driving and not yet parked. My exit and circle around the block was just enough time for her and her partner to get out of their truck and I catch them standing right in the middle of the lane, cutting me off yet again. They were oblivious to me, patiently sitting there, waiting to safely maneuver around them. They still didn’t cross, they just walk toward me, past my open window and she mutters at me, “you’re ridiculous”. Yes ma’am. Me, patiently waiting for you to get your bearings in a parking garage is ridiculous. I am ridiculous. I didn’t betray my irritation, I just acted as if they didn’t exist all whilst actively trying not to run them over. I want to scream to them, my husband has cancer, be nice, and I realize, who knows the depths of trauma their loved one may be facing. And I shrug the whole thing off and am free to move on. Literally and figuratively. I guess I have the energy to be irritated, but still, ain't got time for that.

You know what I think might be a little ridiculous? The nervous looking new dad, who looked a bit soft if you will, one not accustomed to carrying heavy loads. He was loaded down with bags, a large and heavy basket of fruit and about 10,000 helium balloons. Our eyes met as I passed by him, and the look in his eyes revealed something. Fear? Something. I’m not sure. Somewhere in there was a brain calculating how to fit all the schwag in the car, in addition to a mother and child. The balloons alone would take all the available head space in the car. Note to self: save the balloons for another day and bring dad a stiff drink.

We asked our nurse today how many people are camping out at the hospital like I am. Not as many as should be he said. That made me feel even better about being here. They, who bring me coffee every morning, do not see me as an added chore, but a healing benefit.
I also change Dom’s sheets every day, so there is that.
But, what a wonderful unit that sees the benefit of families being together. Counting our blessings every day.

Dom’s still not feeling the effects of chemo. We realize it takes time, but for now savor this period of feeling good. He did sleep a lot yesterday. Every now and then he has to catch up on lost night sleep. When he wasn’t sleeping, the nurses would wander in and out to talk about whatever came up. His electric razor came in the mail yesterday. He’s not allowed to use a straight razor, the risk of infection if he cuts himself is too high. So we ordered a razor, and after over a week without a shave, he was quite happy to have it. We found the mirror in his hospital table, wrapped a towel round his neck and away he went. We welcomed the nurses to our beauty parlor as they filtered in to escape the ever ringing bed alarms.

Another day in paradise. No definitive answer on when he will be discharged. It’s basically up to his body, and how fast he can make some new white blood cells. We both look forward to going home, and feel quite safe in our little cocoon and are in no hurry to leave the constant care. I guess, either way, it’s a win win.










Monday, June 26, 2017

Nobody puts baby in the corner

I feel like a kid in the backseat of a station wagon. Mom’s wearing a scarf over her hair and tied at her chin, because the windows are open and she doesn’t want to muss her hair.
“We’ll get there when we get there.”
I think it’s because our doctor definitely has a 1950’s vibe.
We’re on this road trip, in the back of the car, and we’d kind of like to be at our destination, which is a complete recovery, and home. I’m trying not to “are we there yet,” but I’m young in this, and I’m curious, and I want to know.  Each doctor visit, it’s like we’re handed a juice box to placate us in our back seat of knowledge.
We’ve been told a whole month, another week, and everything in between. We’ll get there when we get there.
We had a floating nurse come in the other night, and go through the whole drill with us, and though her only job was to check his vitals, felt incumbent upon herself to tell us we’d be here a month, and again, we need to rent a house, and she wished we could move in with her but she can’t take in all the strays……and wow. We love all the care we are getting here, but occasionally there’s that odd experience. Part of the bigger odd experience of going about your business one day, and hooked up to drip lines the next.

I’m fitting in a little too well here at the hospital. I shared on facebook already that I’ve been mistaken for what, I’m not sure….I’d gone to the family room the other morning in my jammies, cardigan and some crazy wild unbrushed hair. There were two men, one with a badge sitting in the room. I never see anyone in the room, which also at times holds staff meetings, so I was afraid I’d interrupted something. They said no, and one stood up hoping I could help him. He pulled out a slip of paper wanting to know if the patient in room whatever was out of her shower yet. Um. My husband is a patient here too, and while I’m up on the gossip, I haven’t reached hygiene level gossip yet.
I guess I’ll have to get to work brushing up on what goes on behind closed doors.

Behind closed doors. I just want to know what every beep and alarm means. I love that the nurse’s call button makes a harp sound. Seriously. Like a quick stroke across the harp all gentle and angelic. I figured that one out. But, there’s another alarming sound I hear every so often and I’m wondering if people are really stroking out or what? Turns out it’s the bed alarm. Some patients, as I mentioned earlier, are confused. There is an alarm in the bed, so if they get up, it sets it off. Do you think I should play a little trick on Dom?

Dom. I mentioned he was doing his laps yesterday? He and the nurses are comparing their steps on their iPhones and fit bits and he is lapping them. Ha ha! He walked over 6 miles yesterday. It’s the whole make hay while the sun is shining thing, and the sun has been shining on him. He has felt really well the past few days, so he has done all he can in anticipation of rougher days after the next round of chemo, starting today.
Seeing him so strong and active has really helped me. I couldn’t quite picture how things would look, as he was so ill the first several days we were here. But these last few days, I can see that we will be able to resume normalcy over time, and he will be behind the camera in no time. No push to get him back to work, but always the desire he resume the things he loves.

We had a ninja nurse last night. She prides herself on getting in and out without waking the patient. That was really nice to hear that’s important to her. I also thought for a moment I’d set some landmines to see just how ninja she really is. She laughed please no. I also want to put a post it on the computer/robot creature that should nestle in the corner between a cabinet and the wall. Every day it’s wheeled a little further out in the path between myself and the door. Nobody puts baby in the corner, it should say.

I feel the same way about Dom. Nobody puts baby in the corner. He’ll be out dancing in no time.

Sunday, June 25, 2017

Letting off steam

We had our friend visit again. The one who brings his own mask, doesn’t touch anything at all, and I think does not even exhale.
We had a great visit talking about many things as if we were sitting round a dining table, rather than on hospital beds and vinyl furniture.
I shared with him how it is an odd feeling to wake in the morning to 2 or 3 voices. I’m never fully rested, but I’m awake. To wake with people in their work clothes doing their work thing in your bedroom makes one feel almost infant like. I open one eye, Dom’s looking at me stirring. I open both eyes and ask him how he feels. “Good morning” I hear from the end of his bed or behind the computer. Actually, I don’t feel infantile. I feel royal. Or at least some Hollywood version of old royalty where they had attendants ready to jump as soon as they awoke.
Our friend laughed as I shared that I have coffee in my hand before my feet even touch the floor.
Lest you think I’m getting too big for my britches, it’s a steep price to pay.
But we laugh at it all. We laugh with his sister on FaceTime that we have a wired remote for the TV, lights, and a big red button to call for jello all night long.

These past few days have been really good. The calm before the next storm. We do watch the numbers on the white board. We’re seeing the patterns and can better anticipate when he’ll be hooked up or be free.

He and I are very conscientious at home. We eat leftovers regularly and rarely find ourselves throwing away any food. In the thick of it here, Dom was really struggling to eat. As you all hear regarding chemo, I’m sure. So, in his wisdom and humility, (make that just humility), decided he only would have breakfast and dinner delivered. So, naturally, the next day he had a massive appetite. Lesson learned. Bring all the meals. You just have to let go of some of the things. Now is not the time we’re going to worry about being wasteful people. Sorry planet. We do our best most of the time.

We learned when the phone rings in our room, it is actually for us. We just sat here staring at the phone ringing wondering who could be calling us, surely it was a mistake. The nurse came in to let us know the kitchen was ringing us. They were perplexed as to why Dominic had ordered just watermelon and mustard. As were we. I guess somewhere along the line they dropped the sandwich. It gives me confidence in the kitchen that they realize mustard and watermelon are just not a thing. Yet. You crazy foodies.

We had the funniest nurse yesterday. She had a thick accent I struggled with, but Dom had no problem. As per usual, Dom was her refuge. She’d appear randomly in the day giggling like mad telling us about her other patients that were grumping at her. You don’t know me, they’d say. You don’t know all the things. I know more, they’d say, resisting treatments and instruction. High drama around here. They did not like to be told they were confused. I guess our nurse today has the same patient load because I heard her saying to another in the hall that two of her patients are confused, so if she sees anyone wandering aimlessly in the hallway to let her know. One of yesterday’s patients actually unhooked his lines and took off.
Of course it’s serious and sad business. But nurses gotta let off steam too, so for now, we’re the safe room, the fun room. I’m sure on the days the chemo wreaks its havoc, they’ll mostly know to simmer down. Except maybe Terry. But we haven’t seen him in days. And this mama bear found her footing.

Our weekend Doctor just came by. He’s from Lebanon. He and Dom talked about accents. The Doctor has tried to curb his accent, but cannot, so Dom generously said, well, it’s a second language for you. No, it’s the fifth. He speaks five languages. And is a doctor. And….from what I gather from the gossip, his family is filthy rich. This is not work for him. It’s his vocation.
All that money though, and he’s jealous of Dom’s hair.

And so that is life.

Friday, June 23, 2017

More views from the 4th floor


Dom is eating cheese.
Ya'll may think this is no big deal, but cheese is everything. Cheese is what we do on those days that we're home working on our jobs and projects and we need some quick, yummy food. We love the cheese. When he asked for the cheese, it was like a piece of home for me. It was the first non-hospital food he ate in a week.

It has been full throttle since our visit to the ER a week ago yesterday. But now, we're between chemo treatments, and he seems to have stabilized, and he's eating. Not just the cheese or the beige hospital food either. He has had watermelon every day since Tuesday. Every meal. Every day. Watermelon. Carolyn, who comes by to take his meal orders heard him say he has a craving for watermelon, and now it's a thing. I think he's pregnant.

We have a bouncy, chatty nurse today who has explained some of the secrets of the hallway. Every room has a board outside with sliding pieces of plastic that slide  to reveal options to communicate the patients' needs. It reminds me of a child's toy to learn reading, except there would be a picture  of a dog that you slide to reveal the word dog. Options include: neutropenic, or isolation, or fall precautions, or no visitors, or nothing by mouth, or leave door open.  My favorite: Quiet Time Healing Time. Some doors have an extra new agey looking paper sign that says the same thing, quiet time, healing time, all swirly letters and fancy and I think someone's passing a peace pipe in the photo.

Some of these are very curious to us. Why must the door be left open? Why must there be isolation? Why does one room have to leave the door open, but there's also a huge red stop sign on the floor as you exit that says wash your hands when you leave. When you leave. There is something in that room that must be washed off hands before leaving, but the door must be left open. Curious.

I wondered if any of those would apply to Dom. I'd already covered the fall precautions, because who slid that one open? Were those signs in our future? Would there be a big red stop sign at our door? We hope not. Turns out the isolation and the stop signs signify something other than and in addition to the cancer, and thankyouverymuchcancerisenough.

Every room has a computer on a stand. The hall way is also littered with computers on rolling stands. If any of you are Whovians, you'll know what I mean when I say I sometimes feel like I am in the Library. They look like one eyed robots on wheels. I glance at the screens when the nurses are signed on. When they're not poking or prodding or pill pushing, they're looking at spreadsheets of endless numbers. Everything is measured. Everything. And timing is everything. 3 am is the time to draw blood. Taking their cues from bats, I suppose.

Today, I did a load of laundry. In my new community apartment. Did I tell you I did some yoga the other day? I never see anyone in the family room, which consists of a living room, kitchen and dining room. I use these terms very loosely. I laid out my yogitoes in the dining room adjacent to the kitchen and began my practice. In came someone for a popsicle.  I tucked myself a little more out of the way. In came someone else. And someone else. And someone else. So many things were suddenly needed in the kitchen. Breathe in. Breathe out. I haven't seen anyone since, and I've spent some time in there.

Yesterday was a particularly difficult day. It was like we made it through the first gauntlet, and Dom felt better, so I could lose it. I have to move the car every day. I'm not 100% sure why, but I walk down to the main Oncology nurse's station and get a pass. I go down two floors to the bridge and insert my parking ticket, and then my pass. Then I get my ticket back, go to my car, exit, make two lefts down one way streets, pull into the garage, get a new ticket and park in my spot again. It's really rather ludicrous and I feel silly.  I've decided the purpose of this venture is to get a new bubbly water to stash in the fridge. I have a case in the back of the car.  I'd feel pretty ridiculous toting a Costco case of bubbly water through a hospital, so every day, I grab a bottle or two. Dom likes his bubbles.

The tears would not stop yesterday. I just rolled with it. It's in the manual. Page one. Roll with it.
Coming back from my car, I noticed a miniature pony in the parking lot. A serious real, live miniature pony. If the pony was a girl, I'm sure it would have been a cheer leader with heart shaped lips and perfect posture.  I wanted so very badly to press my face into her neck. But I knew she was headed to a children's wing, and I knew that's where she belonged, so I kept walking. Inside, two women had a pair of gorgeous dogs on leashes with their little important vests. Again, I wanted to stop them and bury my face in theirs. And again, I stopped myself.

We don't get animal therapy. We get music therapy. When I returned from my bubbly reconnaissance mission this afternoon, there was a guitar and an amplifier outside our door. I stepped inside to a fresh faced young woman who offers music therapy to patients. We talked to her for a little while, and even if she never sings for us, she encouraged us to think about music. To be honest, I'd rather play with some legoes and snuggle a pony, but I'm grateful this hospital thinks of all the things.

Our days are broken up with walks and meals and doctor and nurse visits and we turn on the television every so often and realize it's still garbage and turn it off and go back to reading. We walk several times a day. I feel like a freshman in high school next to Dom with his full head of glorious hair that screams out "hey, we're the new kids." He will lose it. But for now, it's still there, unlike most of the the others we pass. It's awkward. We're in this together, all of us here in the Oncology unit, but we don't know each other, and the thing we share is bigger than we want to handle. I said hello to the plump opera singer today and she stopped for a moment to say hello back. She, in her scrubs and baldness looked more alive than her companion. Her hair is going to grow back and she is going into remission and she is going to live life to the fullest. I just know it. Dom and the skinny man nod at each other and kind of mumble a dude hey or some such.

Sometimes we pass that awkward person. The one visiting a relative, so they're not quite as dug deep in as I am. They're still processing their own business, loitering in the hall because the rest of their family is still visiting but they are just done. They say to Dom "hang in there" all sad faced and weird; like some hybrid football slap and pity face. It's okay. Cancer is awkward. To say the least.

I've said it before, and I'll say it again, Dom is a hit on the ward. The nurses poke their heads in and express their sadness that they did not get assigned to him that day. I guess some people resist the treatments, and naturally some are surly. But Dom is seeking wellness. He doesn't complain. He is charming and compliant. He is thankful and grateful to be here. As am I.






Thursday, June 22, 2017

The 4th floor

Everyone who knows me knows that I am a country bumpkin. I've lived in a cottage in the country for 20 years. While I've had my youthful days of driving down to San Francisco and staying out late, these last several years, all I've wanted to do is be home on the farm.
The addition of a husband to this situation made it even more desirable to do this country living thing.
We raise chickens. We planted a garden. He has been able to have a photo studio in the barn to hone his craft and follow his passion. We both often work from home, and catch each other throughout the day puttering here and there. He is the hardest worker I know. Always hacking away at something. We have plans for the future that revolve around sustainable living.

It all looks so far away from the 4th floor.

I open the shades at night, so we can wake with the sunrise. The setting sun is fierce in our window, and hints at the heat wave everyone else has been experiencing. I've never lived in an apartment. Whoops. I'm wrong. We lived in a multi-story apartment in Oakland when I was about 5. At least, I think it was multi-story. For all I know, it could have been two stories, and kids just have awesome imaginations.
But for most of my adult life, I've lived in the country. The cottage isn't even my first farm girl place. I used to live way up a hill from which you could see the Golden Gate Bridge from Santa Rosa on a good day. It was quite a haul to get anywhere. My nearest neighbor was a half mile at least. I've just always loved being remote.

But, my only experience with living in tall buildings is in a hotel. My brain is struggling to make sense of this. I should be looking down at a golf course, or an ancient building. I should be on a business trip or holiday. I should be anticipating sight seeing tomorrow rather than anticipating our next visit from the doctor. We are in the city, yet the night is still inky black to me. In part because we can't figure out how to turn off a weird large, square, blue light above the hospital bed. It has turtle decals to trick us into thinking we're swimming beneath the turtles. I guess. Some vacation.

I've also never stayed in a hotel room that has a big window on the door. Sometimes I can't decide if I'm in the fish bowl, or looking into the fish bowl. There's a curtain deeper in the room, but when we're awake, I watch the world walk by. Rather the inhabitants of this very particular world. The woman who sings magnificently as she takes her daily walks. The long, lean man who refuses to wear a gown and wears a plaid jacket and always a hat. He walks as if his life depended on it. And it does. There's a teeny tiny woman always with a pink turban and a pink robe and pink slippers and freshly painted pink nails. There's even pink puff balls that flop around her slippers as she shuffles here and there. I think she's a pro at this. I think she's close to the other side. The good side. The home stretch.

I feel like a ghost. Dom sleeps a lot. I leave the room to take care of business. Sometimes people make eye contact and say hello. But some times there's an emergency down the hall, and I become invisible. I just float through doors and haunt my new home.

I'm strangely reminded of summer camp, or the many retreats where I've stayed in hotel like buildings. It feels like I should be able to tip toe out and meet someone giggling in the hall to run down to vending for a snack and some gossip.
But, they're all working. And I'm not here for camp. Though I've had many come to Jesus moments in this place.

How many people live here? Let me rephrase that. How many people live here without a plastic bracelet with names and dates and bar-codes? How many people live here that have an avocado tucked away in a community kitchen and a car that has to get moved daily and just a peripheral relationship with doctors and nurses?  I feel like I'm cutting class as I stalk past the front desk and pay no mind to schedules or bells. And there's so many dings and rings here. But they don't signify recess.

There's silver linings to this ghost walk. I approach the door to the parking lot, and even before opening the first of two doors to the outside, I can feel the warmth. As I step outside, it's like someone has wrapped a wet, hot towel around my face. I remember everyone is melting while I'm bundled away in a cardigan.

I miss Terry the Talker. Can you even believe it? Our nurse tonight just mumbles and shrugs. It feels different. We can't break the ice today. There's someone in our old room already. I'm a little jealous. It was small. But Dom and I like small. We like the furniture piled on top of itself. We like stepping on each other. We like people who, even if they may not catch all the social cues are at least interested and passionate.

The night nurse just came in. I remembered just as she was leaving, that she may know how to turn off the aquarium. I caught her breezing her way out, and she just flicked the switch, no problem. So, the turtles have gone to bed. And so shall I.

Tuesday, June 20, 2017

The favorite nurse...or, Terry the Talker

The nurse that made me think outside the box.

It’s not because he’s a man.

We’ve been here at the hospital for 2 1/2 days now. (Make that 5) It seems like more because each day is broken in half by 2 nurses. Each nurse feels like a day, as they frequently come in and check on Dom, and as I mentioned earlier, have somewhat of a disregard for day or night sleeping. That’s okay, they are doing their job, checking on levels and vitals and making sure we win.

We have really liked all the staff. There’s myriad of cultures represented here. There’s so much kindness and thoughtfulness present.

Along comes Terry. Oh Terry. Terry is a big guy. With a lot to say. At any time. Dom is friendly to everyone. And he has engaged everyone in conversation. I think he appreciates a nurse who will sit and shoot the breeze with him. I, on the other hand, am not a huge fan of Terry initially. It feels like Terry thinks he is the first person to give us any information, and I’m weary. His shift started at 7pm, and imagine as we’re winding down exhausted, Terry is winding up. He has all the analogies and stories and explanations. Dom bites. I’m on information overload.

Meanwhile, our first visitor arrives after a long hot drive. We’re so honored this friend has come. Terry has already been talkingandtalkingandtalkingandtalking. We invite our friend in, and Terry gets into a squat against the wall as if he’s getting real comfortable, to stay a while. In front of our friend, he lectures us on having friends visit, they bring germs, he’d advise against it. In front of our friend. After a hot two hour drive. You shouldn’t be here person.

Dom doesn’t care, he’s the nice one. I’m about to flip out.

So, finally, all Kamala style, (I wish) I suggest that Terry be on his way. I point out to him we have a friend who drove a long way we’d like to visit with. Of course I’m the bad guy.
I get shushed. He keeps talking. And after taking his authoritative stance, takes his leave.

We have a nice visit with our friend who has come bearing gifts that by default come to me. We laugh and shake our heads at what is happening. We so appreciate the visit. And at just the right time, he knows it’s time to leave.

We go through the rituals of bed time. We have a few moments of alone time, and express how tired we are. We snuggle down and dream of sleep. We know that at midnight, Terry will be back with more treatments.
He’s back at 11:30. To check in. To squat and talk and tell us all the things. About his job, his life, whatever. You name it, he tells it.
He’s there to tell us, at 11:30 pm, that it’s important that we guard our time and not let friends over stay their welcome. He’s there to tell us it’s important we get our rest. He’s there to tell us he can be the bad guy and let people know it’s time to leave. I’ve been lying on my side the whole time trying to send the message it’s bed time. It is definitely time to leave. I have had enough at this point. I sit up and let him know I can be the bad guy too. Big sigh. Flop down.

Too late to sleep now, time for more bags and lines and vitals.

Dom asks if he has to be awakened for every treatment and check. The answer is no. But it’s really yes, because again, we are intentionally awakened through the night.
I wake up around 5 hearing them talking. Again, and Terry has printed out all the drugs, and thinks that 5 am is a good time to talk about the drugs. His self importance is more than I can bear and I let him know, I’ve already asked for and have all of that information. Well, you can’t have too much paper, can you? He says. Yes, yes you can have too much.

I don’t want to be mean. When I fully wake and sit up and say good morning, I smile at him, and act like everything is perfectly normal.

Dom likes him.  I don’t *not* like him. I just want to punch him when he keeps us awake talking about how our friends will be terrible people keeping us awake.

He really is a nice guy. Don’t get me wrong. It’s clear he loves his job. He love people. I think? The day nurse says he’s hyper. She says he’s the nicest guy, but he hasn’t been able to transition from day to night nursing. She’s able to come in and out of the room, and if Dom’s eyes are closed because he’s catching up on the lost sleep from the night before, she touch’s him as little as possible, walks silently and changes the lines and reads the numbers, all without waking him. And definitely not talking full volume. It is possible.

But Dom likes Terry, and that’s what matters. So here’s me thinking outside the box. Not the all nurses are women box. The box of how I see people. Terry does have a lot to say. But he means so well. He’s been our nurse two nights now, and he and Dom have developed a rapport. He brought Dom cotton balls with oils he researched. He “doesn’t know yet how all that stuff works,” but he thought it may help with the distress to sniff some lavender. He always asks me if I need anything. He is super attentive, and even if his timing is off sometimes, the thing is, he has made all the time to be present for Dom on his shifts. So no matter my initial thoughts of Terry the Talker, he’s on team Dom, and that means I’m on Terry’s team.



Monday, June 19, 2017

Day 5

We're waking up on day 5.

Dom is feeling better this morning. Yesterday was a little more challenging. It was a full day of everything under the sun being pumped into him. Blood, platelets and some other blood thing. (That's a technical term).
It's a lot to take in. Some of the products have very short life spans once brought out of cryo, so the nurse was all business about getting them in quickly. Stacy. We really like her. She was on her toes yesterday for sure.

So, after a day full of various lines, Dom was feeling a bit full and uncomfortable. A beige dinner sat untouched and sent back. Happy that he woke up hungry and feeling better. We're also pretty excited that every morning, someone brings us both coffee. They are all so kind and attentive.

For those interested in more technical terminology, The whole point of chemo is to get his white blood cell count down to zero. He started somewhere up at 190, if I remember correctly, normal is somewhere between 5 and 11. So....that was the giveaway. This morning, he is down to 3.2. Good news. Everything is doing its job. He's going to get down to zero, and stay there for a little while to make sure all the baddies are gone too.

Onward!



Sunday, June 18, 2017

Where I share the very personal

My head was a little fuzzy on Thursday. By noon, I had wondered what I had done all morning? I ran out to get some pain killers, because Dom had been having a head ache all week. I’d had an ominous feeling myself all week. He’d had some weird bruising, and we talked about having it checked out. I had some yoga classes to teach, and I seemed unreasonably anxious about everything.

He called me when I was just nearly home, and I just knew, on some level, things were about to go down. He called because he’d found a tick. I tried calling our assigned doctor through our insurance, and after about an hour of trying, we decided to just drive down.

Turns out, they’re not taking new patients, so we headed to Urgent Care. They were super nice. The practitioner we saw made a lot of funny faces like, hmmm…. As we talked about the tick and the bruises, and decided all things considered, we needed to go to the ER.

We were feeling like it was Lyme’s and I was convinced he had a previous tick bite that caused all the bruising. Because denial feels so good……

Our experience at the ER was interesting…..
A nurse screened us in a space right up front. She sneered at us when we told her we did not have a GP. Then she told us how important it is, and who knows, it may be cancer it may be this or that, and we should have a doctor. While all her words were true, it was weird.

So, we were taken to a little curtained closet, sharing a curtain with a man, woman and baby.

Can I just tangent here? As it turns out, the baby had been brought in by CPS because the mother was taken to jail. A boy, about 9 months, with a rash so bad, the doctor was in noticeable shock. The man was telling the doctor it couldn’t be too bad, because the baby was barely crying and not showing signs of distress. No, the doctor said, he wouldn’t cry. I could hear the question mark from the man’s face.

The doctor continued to say it’s clear the baby has been sitting in urine for long periods of time. What I heard, without him saying it, is that the baby wouldn’t cry, because no one will come. Or worse yet, when they come, they will yell or punish the crying because it is inconvenient.

I could hear the case workers discussing a difficulty in finding a family for the baby. I could hear them discuss a family misusing the funds given. I could hear all of this, while waiting for a diagnosis for my husband, and having my period and knowing yet again I am not pregnant and knowing the days have slipped by that I could be, and wanting the workers to just hand me that baby. And crying. For the known and the unknown.

A woman looked at the small bulls eye on Dom’s side. They gave him a pill without any food, and he started heaving. I’m sure because we both knew this was not the problem. No. Lyme would not be the final outcome of the day.

But…I insisted….the bruising. What about the bruising? Can’t you do a blood test?

Sure.

And so we found out that his blood was highly abnormal. And as the story unraveled, it’s most likely cancer. He would not be going home that day. I think they were all in amazement that he was even standing and looked so healthy. For his platelets were so low, they immediately gave him not one, but two bags of platelets. Our physician at this juncture told us too much and not enough. She told me to go home and pack bags for a long trip. Pack chargers, books, whatever. Get animal care. Why did I pack a bag for Dom, who will spend the next 3 weeks in a gown and scrub pants? Why didn’t she just tell me to dump the underwear drawer in a bag and be done with it? Why did she go on and on about the packing and how much we need a general practice doctor (also) and how we’ll be at the hospital in Sacramento for a week or several weeks, and I will have to get a hotel, and he’ll have a bone marrow transplant and just a rapid fire litany of information that was so fragmented and overwhelming  and oh my gosh.

Thank God for my neighbor.

I kissed my husband goodbye and set off to make heads or tails of what to do.
I’d already told my neighbor we were off to the doctor…for a tick bite. She sent a text of the cats I’d asked her to kick outside. I called her right up and told her Dom has cancer.

She rallied then and there.

I went home and packed our bags. What do we need? We do everything through wifi. We need our cats. He needs his big computer. Can’t take those. I threw a bunch of things in a bag for him I’d later come to realize was so totally unnecessary. I turned the room upside down looking for our travel bag with toothbrushes and paste. I’m usually so organized. Could.not.find.it.

I threw the barest necessities in bags.

I washed the dishes. It’s hot. It’s day one of a heat wave. It’s also Thursday. I clean my house on Friday or Saturday mornings. It’s the end of a clean cycle. I also clean the chicken cage on Saturdays. And make sure everyone has fresh water. But it’s Thursday. The house is worse for the wear, and worse because Dom wasn’t feeling super and I just made him stay in bed that morning and left the house a little disheveled to let him be. But now we’re going to a hospital in Sacramento. I have to wash the dishes. I can’t embrace the stink of unwashed dishes after a heat wave. Trash has to go out too. I walk the trash up the hill. I break into a sweat. Sweat. My drenched with sweat yoga clothes are in a basket by the door. Am I crazy? My husband has cancer, and I have to throw a load of laundry in. I can’t leave that to stink on the floor for three weeks.

I take a shower. When will my next shower even be? Will I sleep in a car? Get a hotel? Sleep in a chair next to the bed like I’ll do later that night. Will my husband survive?

I call the neighbor who comes down. She is my savior. She’ll take care of the critters. Water our lush little garden. Whatever. She’ll love us.
I scan the kitchen with all the food I’d just bought for us for the weekend. A melon on the counter. A bowl full of fresh eggs from the chickens. Eat it all please, I say. I feel weird. My husband has cancer, and I want someone to eat my food. But it’s true. There’s vegetables and blue berries and things that will shrivel before we can eat them. It would make me happy if someone ate the food.

On the way home, I’d called my mom and sobbed. Why. Why this? Why now? So much fear and sadness. She struggled with wanting to talk and having me sobbing and driving and talking on the phone. I struggled with the idea of being in an accident when my husband needed me. But I continued to sob on the phone anyway.

On the way back to the hospital I talked to my family friend whose baby I watch once a week. I must tell her right away….that won’t be happening. She’s so there for me. All the right notes of shock and sadness.

I get back to the ER, ready to follow an ambulance with Dom in the back, and fearing I’d missed him completely. But, he’s still there. Hooked up to his second bag of platelets. There’s no hospital with a bed that will take him. Will we have to travel to Southern California? My mind races. The clock is ticking and all of a sudden, it’s past ten. Past the time I’d call anyone for advice or a soothing word. Dom’s still in regular clothes. Looking so young in a t shirt, flip flops and jeans. No hint of the desperate condition he was in. Just handsome and youthful looking.  He’s sprawled on a hospital bed, the back cranked so high, it was more like a chair.
As soon as it’s early enough in Doha, he Face times his sister. She’s just recently returned from visiting their mother in England after her own medical scare.

We’re in a wait and see game. He can’t go home, but there’s no bed for him. The on call doctor is not on call. What? Finally, at around 1:30 am we get word he’ll be taken by ambulance to Sacramento at 4 am. I will meet him there.

I return home, leaving all our baggage in the car, and climb into bed for 2 hours sleep. I hated to leave him, but I also felt like I needed sleep. I needed to regroup. My two hours was really only one. I woke after an hour with an urgent need for the bath room. How could I have  to go so badly after not drinking all day? We’d both been swept up on this path before having lunch, so basically we were both living on toast. His GF and mind alllll the gluten.

I crawled back to be only to hear the alarm a moment later. I pulled myself together, ate some yogurt, googled Sutter in Sadcramento and headed out the door. I left just after 4 am. I nearly turned around. Who was I to be driving on no sleep and little food? I was afraid to drink for fear of having to use the loo on the road, but my eyes were so bleary. I opened and closed the window. I listened to World News. I was on hyper alert, because I really should not have been driving.

I didn’t cry.

Until the sun came up.

And then I cried and cried and cried.

I called my mom as soon as the clock turned to 6. It was a short conversation, because I needed Siri to get me to the hospital just after 6. I made it safely that far, and then almost went down a one way street…the wrong way. A sign said the hospital was that way, so isn’t that where I turn? I followed the signs, being a little more careful, and found a parking garage. I pulled up to the ticket machine and couldn’t figure it out. Insert credit card? Push what button? The guy behind me screamed push the button? Which one? Oh, the big one. Ok. I’m in the garage. There’s a spot. Right in front.  I’m bleary. I grab my purse and head toward, where am I headed? Where’ s the entrance? What is this place? The buildings are separated by streets and connected by walkways on the second floor. I get directions from a security guard and I have to go up to go down and come around….I’m in the building, heading to oncology and my phone rings.  I’d tried calling him a few minutes earlier and it went straight to voicemail. He’s crying. He’s scared. He’s afraid he has woken me up. He doesn’t know I’m just two long hallways away from him.

And here we are. In the Oncology unit of Sutter.

More whirl wind day. We’d already crossed paths with a dozen people the day before to get to Sutter. Then it’s this nurse and that nurse and the doctor is coming and we’re here to give you a pick line and the volunteer and the bone marrow people and so many faces. All kind.

We’re in shock. Dom’s exhausted and overwhelmed and now a human pin cushion, the crease of his elbow black with bruising. He’ll have so many procedures in one day, before we’ve had time to even digest it all. You have cancer. Before we have time to think about what’s next, there’s a new face typing something into a computer and drawing blood. He had a bone and marrow procedure and the pick line, both considered surgery of sorts. He had to have his heart looked at to be sure it could withstand chemo and they took him in a wheelchair. I stayed back in the room happily setting up the cot to steal a few winks. I drift off…..knock knock, housekeeping, can I clean your room? Um, that’s okay, thanks. I’ll just get your trash then. OK….slowly drift back to knock knock, hi, can I take your order for meals tomorrow?
I sit up and tell her I’m not the patient, clearly, as I’m on a cot and not the granny bed. But I’d be happy to pick out food. We’d told our nurse earlier that Dom can’t eat gluten he gets headaches. Everything I chose for him from the menu would not be accepted by the computer app that they use to make food orders because it thought he has celiac. We made a plan, and decided to not tell any computer programs that he doesn’t eat wheat because they take things way too seriously. I didn’t realize that now days you get to order from a menu. They’d already brought him a meal full of wheat, so I was confused. I’ll be confused a lot in this 24 hour period of time. I’ll probably be confused forever.

She leaves. I close my eyes.

Knock knock. I’m your client advocate. Can we talk? Okay. We talk about possible prognosis. Oh, we haven’t gotten that definitively. We talk about possibilities. We talk about my cats. He loves cats. I guess he doesn’t realize later the cats will be a problem…..I’m gleefully ignorant for about another 24 hours. There’s talk of maybe renting a house here? How even? What? Too much information.

He’s very nice. I wish I took notes.

Dom comes back, and shortly thereafter, we get the results. Acute lymphoblastic    Leukemia. The kind that kids get. Because of course Dom gets the rarer kind for adults. It means a shorter initial stay at the hospital, and lots of shorter stays thereafter.

It all sounds very positive though. We were under the impression from the folks in Santa Rosa that a bone marrow transplant was almost imminent and immediate. We also thought we’d be here at least 6 weeks. It was a relief of sorts to consider the possibility of just 3 weeks at a stretch and possibly no transplant.

So, we settle in. Everyone is so nice.

We are told that they are moving us to a bigger room. They tell us this around 6. I pack everything up. And watch the clock tick. He eats dinner. He gets his first chemo hook up. The nurse we love hands the baton to a new nurse who is also great, but a little more flighty. She comes in around every half hour to add a bag or change something. It’s after ten now, and she screams a big hello and talks to us, though we’re both sleeping. It’s around midnight now. We’ve been woken every half hour anyway, so when they tell us we’re moving into a bigger room, I gather all our belongings, and we move. He’s now got his wingman holding the required life-saving liquids that rolls next to him. A parade of people roll through the halls of a house of sickness and there’s quite a bit of confusion. It’s as if they’ve never navigated a wheel chair before. We leave my cot behind, because this room is big. It has a sofa bed. It’s big. We get to the room, and it is actually. Smaller. There’s no sofa bed, rather a recliner. I look at the recliner, and crumble a little. One of the nurses ran back and got the cot for me, while the others had discussion about the arrangement of the existing furniture. The room is smaller. I know I said that already. It’s okay. We’re so happy that I can be with him on a cot. We’re so grateful I don’t have to rent a hotel room and spend nights apart.

The next morning, he’s feeling pretty good. We’re so happy that he made it through the first hurdle without the expected side affect of shivers and shaking. He’s hungry for the first time in days. The breakfast tray comes in, a dome over a plate. We lift the lid, there’s some anticipation like in a hotel room with room service and there’s some delicacy under the lid. We look. Eggs. Just eggs. Just about 2 scrambled eggs alone on the plate. Because of the GF glitch I mentioned earlier. So I run down to the cafe and get him some oatmeal, and yogurt and fruit with whipped cream. I realize later that he can’t have berries anymore. They can’t get them clean enough.

A new band of faces and names.

A new day.

The doctor comes by and is happy to hear no side affects. He tells us he’s requested a bigger room. We’re fine we insist. You’re going to be here a long time he says. Long time. What does that mean? I’m clinging to 3 weeks max. Home is where you heal. No. Home is where we are together.

A massage therapist comes by. No massage today, but he’ll be getting massage. A social worker comes by and totally rains on our parade.
What are you going to do if he doesn’t recover and can’t work? Do you have plans? Should we get medical? Oh, you have cats. They may not release him if you have cats. Do you know about the Bone Marrow transplant system? He’ll need a transplant maybe. (Maybe not). She left us both a little unsettled after a day of feeling a little relief and direction.

We’re approaching the end of the third day of our adventure and the second day of chemo. A friend is on the way.

The texts have poured in, the messages, the FaceTime with family. We’re loved and cared for.
We’re getting a bigger room. Home is where we are together.


Sooooo…..here we are….

Dom's version of events

Dom’s version events:

I was feeling a little more fatigued than normal. But I’d been working full steam, so maybe it was just that. But then some unusual bruises were showing up. The ones on the leg seemed reasonable. I’m busy, not unusual to bump into things and bruise. But then the inexplicable bruising on the torso was worrisome.
Cass had gone to the store for pain killers on Thursday, and while she was away, I discovered a tick while I was checking for bruises. We decided to head off to Urgent Care thinking Lyme’s. Urgent Care suggested a visit to the ER was more appropriate with the bruising.
That was a really good thing.
Initially they thought it was just a reaction from the tick. We pressed about the bruising. So, they drew blood, and came back with the news that Lyme’s was the least of our worries.
Leukemia.
Platelets were so low, they wouldn’t let me go anywhere until they’d administered two bags of platelets. Apparently, had we been in an accident on the way, I could have bled out.
They told us to pack our bags, we’d be sent to Sutter in Sacramento.
Cass ran home to collect our bags and organize care for the animals. We thought I’d be leaving by ambulance right away for Sutter in Sacramento. It was complicated. There needed to be a bed. The doctor was on call. We were in a holding pattern.
We finally got the word at around 1 am that I’d leave for Sacramento at 4 am to be admitted to Sutter at 6 am.
And then things really got busy.
Cass arrived about 10 minutes after me. I was in a room just taking it all in.
Then the madness began. Blood draws, a needle in the back, a pick line, heart tests, nurses, more nurses, results, explanations.
Acute Lymphoblastic Leukemia.
The prognosis is good.
Cass and I thought we’d be here for 6 weeks, so when we heard the program would be possibly 3 weeks with several follow up visits of 4 day stays, and many more visits in the future. We got this. We can do it. Also thought a bone marrow transplant was a for sure thing, and found out it’s just a possibility. That’s kind of a relief.
They immediately started me on chemo. Made it through the first night with flying colors. All kinds of warnings about shivers and shakes and none of that happened, so that’s good.
Woke up with an appetite after 2 days of little to no food. That also felt good.
Everyone here at the hospital has been really great. My doctor specializes in this. We feel under the best of care. The nurses have all been great. I have my own room, and there’s a cot for Cass.
My job is to walk, brush my teeth, shower, eat, and heal.

The Diagnosis and Answers

Thank you everyone for your love, support, prayers, and good questions.
Here are some answers as we think of them:
(I'll update as new questions and answers come up.)


Diagnosis:
Acute Lymphoblastic Leukemia
There are no stages to this. There are several different types of Leukemia, of course he got the kid one. No one can say how long he has had this. It’s a bit of a mystery yet. No idea what makes it happen. It’s just what we’ve got, and we’re going to fight it!

First visit to ER on Thursday the 15th.

Stay at Sutter 3 weeks for first stay. All else unknown as yet. We’re looking at a lot of 4 day visits and follow ups.

We may have to stay in Sacramento at some point.

The logistics are a bit over whelming just now, so it’s a little easier to focus on grasping what is happening right now, and crossing bridges one at a time. We really don’t need anything at this moment but all the love and prayer and hugs. I am sure we will need things along the way. I am taking notes, and will learn to ask for things as we need them. It will be tough. We don’t like to ask for things.

Bone Marrow Transplant unknown yet.

The side affects from Chemo don’t kick in right away, so hoping for the best.

We have animals that are currently being looked after. I am thinking we’d like to set up some relief for our neighbor, so thanks every one that asked. I am sure in future, we will need a little help with the animals.

I am not sure yet if blood/platelet donations can be donated directly. I’ll look in to that. Meanwhile, just knowing that people are prompted to do so is encouraging, and we so appreciate the thought.

His diet is going to be limited. The biggest thing we need to focus on is keeping him healthy, and that means limiting exposures.
No delicious berries, no kale, no flowers in the room.