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?


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.

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… we are….


MIckey said...

I don't know you, but your blog was posted by friend Kath Phelps. I kept reading and reading. I was there through all your trials. Anyone who has been through ER and all that hospital stuff can relate.

May the tangle untangle and you get your routine down. This will happen.


Julie Bradley said...

Hi sweetie. You don't know me. I'm another friend of Kaths. I just want you to know that you have an army of people caring and praying for you and your sweet husband. Never give up Luvs. Miracles DO HAPPEN. I know, I've seen several.
You are in my heart.

Cassandra said...

Julie and Mickey
Thank you for taking the time to read and more to comment and leave your encouragement. Thank you for your prayers. We covet them for sure.
Thanks Kath for sharing and drawing more prayers to this. xoxo