Saturday, July 22, 2017

There and back again

The only way I can describe this past week is it felt like a tunnel. A very short, narrow tunnel that must be traversed on one's knees.

I knew if we just kept plodding along, we'd get out, and be able to stretch and breathe.

Just a recap of details, since I feel a bit scattered on what information has made it past the fringes of my own mind. Dom was admitted on the 11th for the second round of chemo. Prior to admission, he'd been struggling with fevers and a rash. The chemo he receives is different from week to week. If you remember, he sailed through the first course.

This time was so very different. It knocked him flat out.  He had a fever for over a week. I cannot imagine having chemo on top of feeling poorly. He didn't just have a reaction to Bactrim. He had a very bad and possibly dangerous reaction. And then they threw the chemo at him, that as his covering doctor said, "oh yeah, that stuff, it will tear your guts out." That was his response to Dom after asking Dom how he was feeling and Dom sharing that he couldn't hold anything down for several days.

I felt helpless.

I'd cry. I'd get mad. Never at Dom. He did not ask for any of this.

But, he just endured. I searched my mind for the last time I'd felt really sick. I have the constitution the doctor expected Dom to have. I do not get sick. But, I did get sick, once, on a Saint Patrick's Day over a decade ago. I was out with friends having drinks and dinner. I had not had more than a sip of anything. I realized I was quite ill and got up. There was a very long line for the wash room, and I nearly fainted waiting. I stumbled outside, and laid in the parking lot in dirt and grease and was very sick. I picked myself up, weak as a kitten, and after a few steps, had to regroup by laying over a trash can. I kid you not when I tell you that a man who had watched this entire episode came up to me and asked me if I was there with anyone in particular or could we "hang out."
But I digress. That is probably the sickest I have ever been. I felt like someone had kicked me repeatedly the next day. And I remember just laying as still as possible so as not to feel any more sensation than I had to.

And I looked at Dom. And knew he felt a hundred times worse even than that.

He was supposed to be discharged last Saturday, but that day came and went. As well as Sunday and Monday, and Tuesday.

I went home last Monday and picked up his sister and brought her to the hospital. It tore my heart out to leave him there feeling so down; but only one of us can stay over night. And I knew sister brings healing love.

I took advantage of a day to clean the house, and by Wednesday, he was being discharged. But not before a round of chemo on Tuesday! When he told me he was coming home, I was shocked.

His white blood count is about zero. They don't usually release someone with a blood count so low. Last I'd seen him, he was so quiet and sick.

When I returned, he was up and eating and walking and putting on normal people clothes.

We've been home a few days now. Today, Saturday is the first day I do not have to drive to Sacramento and Dom does not have to be poked or prodded. So we hope. He's getting his energy and strength back. He just ate eggs, bacon and toast, so I'd say he's doing all right.

So we know, we've said this before, we say it again. This is only now. We hang on to the moments that feel good. Every time I see him come back to life after being brought to the brink, it gives me hope, and calms my spirit. I know we'll have more struggles ahead. I hang on to a thought that perhaps he has faced the worst in enduring the toughest round of chemo whilst already sick from the Bactrim, on whose bottle I have drawn a skull and crossbones and frowned at many times.
He and Sam and I are still in our pajamas this morning, just relishing these moments of ease. *Edit, I'm still in my jammies, and they're off on a walk. We're refueling for the fight ahead. We're enjoying the semi normalcy of home. The kitties are enjoying a new friend to cuddle and open the door for them a hundred times a day. I'm enjoying how far away the hospital feels, and I'm writing on my heart that we are loved and cared for, and today's now feels good. We'll hold on to the good.

Monday, July 17, 2017

Peaks and Valleys

Samantha arrives this evening. Our friends will collect her at the airport, take her to dinner, and bring her to our home. I'm sad we won't be there to greet her. Things look much different this hospital stay. It's definitely a season of flexibility as things shift and change moment by moment.

I'm hoping that Dom is well enough to be discharged tomorrow, and he can go home for a day or two. I'm hoping for so many things all the time, all day long.

My heart has broken a million times over sitting with Dom in so much pain. Each break and crack is mended by the love we feel, from so many people. Our group of support has grown to include many of Sam's friends. It is no surprise that such a beautiful soul would attract more beautiful souls. There is no possible way I can ever express my gratitude for all the love and support.

It seems also that people are sprouting wings every where I go. I'm both strong as can be and fragile as a dried leaf. Oh how I love my pardoxes. The smallest gestures of kindness are magnified a thousand fold when one is facing mountains.

Speaking of mountains, Dom relayed to the nurse his acknowledgement this would be the most grueling thing he'd endure. I suggested we climb Mount Everest when he's better. This is going to be incredibly grueling. The unexpected blizzards will come and test our mettle. But there is a summit. And just as one prepares to ascend Everest, they do not stay there forever. And then one day, they are back in their small town, normal life. We will summit this mountain, but we will not stay on it.

On a lighter note, the doctor is fascinated by a Northern Englishman with Irish roots who does not have a stomach made of steel. I picked up that perhaps the Doctor's years in college were not entirely devoted to studies as he referenced all the times in school he would not allow himself to be sick. If you are familiar with doctors who are all business, then this glimpse into his personal life is quite human. Our nurses all seem a little cowed by him, and note surprise when he jokes with Dom. He seems quite compassionate as Dom struggles through this round. Compassionate, and still able to tease a little.

As for me, I am terrified of forgetting to lock the wash room door in the common room. The line is so blurred between this being home, and this being a public space that I sometimes forget to lock the door.  Though, all things considered, the indignity of having someone interrupt me there is a drop in the bucket compared to all that Dom has to endure. I find it amusing that the parade of people that enter his room find it more important to holler out a hello and make their presence known than enter quietly and as if the person in the room is actually quite ill and not hanging out at the pub. I'm sure Dom would much rather be startled naked than be woken up one more time by a nurses aid who wants to check his water or a floating nurse who wants to appear busy. Yesterday, after the admissions woman woke us both up, and I whispered all my responses to her, and she continued to practically yell hers back, Dom lamented no one really has an inside voice in the hospital. We love the laughter outside our door, as the nurses may release some tension with a good story or joke. We just can't comprehend the steady stream of loud talkers that think Norm has just entered the bar.

I've also nearly walked into our old room several times. Hand on handle, just about to stumble into another family cocoon. Thankfully, I have not, and at least I hope I'd know to use my inside voice.

Friday, July 14, 2017

Xhaiden 1

Have I mentioned before that Dom's bathroom in the hospital is cleaned by a robot? It is plopped in the bathroom, the door is closed and it emits UV light like a strobe and zaps away the germs.

The staff named it Xhaiden 1, which means: cleansing beam of light. I find it adorable that a squat little robot is zapping the germs away with a cleansing beam of light.

I also find it symbolic. What else can I do but ponder the cleansing beam of light in my own life, as daily my own spirituality comes into sharper focus, and daily I must allow things to fall away that do not serve. Though really, nothing is here to serve me, rather I am here to serve. More importantly, daily, I ask for the good to come, and the nasties to go away. I envision very uncomfortable microscopic invader creatures being pushed out both by the chemo and by the cleansing beam of light. I envision the light; it is stronger than any rebellious cells. It is clearing out that which aims to destroy, and making all things new and whole.

I am grateful for this tangible reminder rolling throughout the halls, and visiting us.


Wednesday, July 12, 2017

Healing Love

Round two of punching cancer in the face. Yep. I said that.

The car is practically self driving now. I don't believe I've mentioned before that when we shopped for our car, we were torn between getting something really big to lug Dom's gear around in, or getting a tiny little shoe to save on gas. Feeling super grateful we opted for the shoe. Though, the days it is 105 degrees here in Sacramento, even our shoe gets thirsty. But most days, she's quite undemanding.

I've been a busy little bee at home trying to get ducks in a row. As far as animal euphemisms go, it's been more like herding kittens. I was quite a heap on Friday, but by the time we headed out yesterday morning, I was feeling much better as I was able to sort through a few things.

It's difficult for me to share the difficult times, because I like to think we're both powerful and strong, and I don't like to reveal any chinks in our armor.

But, home was so very challenging. As I shared, Dom struggled with a fever and rash the entire time. Each evening was a negotiation of how to proceed. Do we call, do we not call? So much pressure for what would normally be a little nuisance. He was so well in the hospital, I'd imagined he'd be almost his normal self at home. The disappointment ran very deep that he had to endure all the extra irritations and worries.

We arrived back to Sutter yesterday morning. We had labs at 10:30 and an appointment with the Doctor at 11:30....make that 2:30 due to whatever happens to doctors throughout the day. The office told us to go have lunch, and I wondered what that could mean, since Dom's avoiding public places and restaurants. So, we sat in the car and had cheese and crackers, and for Dom, dried seaweed. (ew!)

It was our understanding that we'd be admitted for his next round of chemo. We're new at this game. Being admitted to the hospital not on a gurney was a different experience to be sure. As the Doctor's assistant/nurse (never did get his actual title) told us to go off to lunch, I asked if we were actually going to be admitted. (Because mind you, it felt so weird to know there was a room with Dom's name on it, and we couldn't be admitted to it on what felt like a technicality.) His response was that by the look of Dom's CBC, we'd definitely be admitted. Now, what does that sound like? First impulse is to think that's bad. Being admitted equals bad, right? For a short time, minds raced that they found something bad in his blood, and more bad news was on the way.
After thinking it through, I realized, had they found something (else) bad in his blood, (you know, other than cancer), they would not have admitted him for his next round of chemo. So, in this case, being admitted is a good thing. It's progress. But I'm going to have to get even tougher on these white coats who have become too familiar with this path and forget that more than wanting to hear procedures and drugs, we want to know what does this mean?

After our gourmet picnic on the beach, (I mean lunch in the car under the freeway), we headed back for our 11:30, I mean 2:30 appointment. I had to stay back while he had a spinal tap and another bone marrow biopsy. Perfect time for a useful phone call.

After we were settled in our room, Dom relayed to me that the doctor had to go in a second time for the bone marrow....that the poking around was a little exceptional yesterday. The assistant was remarking to Dom that he was doing really well, especially considering gobbledy gook......I guess he had caught himself from saying out loud that the doctor did have to go in a second time for what he needed and just rambled some nonsense as he caught himself. Yeouch! What a day! Praying all the bad guys are gone from his cells.

We should be here just 4 days. They threw everything at him last night. Pills on the half hour for a time. It's a good thing Dom likes Terry, because that's who had a story with every pill. As long as Dom is happy, I'm happy. Did I mention on the half hour? And, as per usual, I'd wake in the middle of the night to the two of them having full conversations. In my dream state, I'd think I was in a bar. Oh no, just a nurse and his patient. I don't mind. I'm not the one being poked and prodded. As long as Dom is happy. That is what matters!

And in really good news, the Bone Marrow Transplant is covered under our insurance. The required move is not. How wonderful to afford insurance that would also cover living expenses! Goals. But processing all this, we are ever so grateful for all the help we've received so Dom can just focus on getting through this. We both know that we are not alone, and that is healing love right there.


Saturday, July 08, 2017

Buckle Up

I’ll bet you thought we’ve been home enjoying the views and our domesticity. That’s a very nice thought, and hold on to it, as we also hold on to it. This is not forever. It’s only now.

Now, as I type, we are at the infusion center in Sacramento. It’s our second day trip here. We were released on Wednesday, and had one full day at home.

I’d been feeling invincible strong. Our first impression, with ALL was that he’d have the chemo, we’d jump through the hoops, and get to the other side. Then the Philadelphia gene complicated things. But I latched on to a new story of chemo, transplant, a 30 day hospital stay and home free. I latched onto being through this by Christmas and an end to the Annus Horribilis. One by one, my white fingers are being picked off the ledge, and I’m pretty sure I’m just supposed to fall into the unknown. Maybe I can fly.

We didn’t understand until we left on Wednesday that we would not have until the following Tuesday to lolly gag around the house. As we were getting our discharge directions, we were told we’d need to come to the Infusion Center on Friday where they test your blood, check things, give blood infusions. On Wednesday his hemoglobin was on the low side, we thought they’d give an infusion before we left. But they didn’t, and we figured we’d get blood on Friday.

We didn’t.

They scheduled us for 1 pm to help us avoid traffic, which we didn’t. At all. And the infusion center would not give him blood because it was too late by the time all was said and done.
So.
Sometimes things get messy.

And they got real messy yesterday. As per usual, we really liked our nurse. She looked at his pik line, and decided it needs attention. He’d been having a reaction to the adhesive before we left the hospital, and by the time we arrived yesterday, it was angry. Out it came. So our trip was not a waste.
Each step of the way, she’d reassure us, everything was just routine. And yet, Dom’s special. I’d react, and she told me to just hang on tight, this is a roller coaster, so always be ready for the next dip. Oh, so many dips. He gets the fever. He simultaneously gets a rash from a new medication that he’d had for the first time. Special. He is so special. This is what everyone kept saying as they packed into our teeny tiny cubicle to look at his line, his rash, his bright sparkly eyes.

I have run myself ragged the past couple days getting the house ship shape so he will be safe from germs. And then he gets “the fever” from the blasted pik line problem. He had a fever before they released us from the infusion center, and we were perplexed as to why they’d send us home, if we’d have to turn around and come back. I was torn, as I had brought nothing with us, thinking this just a routine visit. The prospect of not going home was another layer, in a far too layered sandwich. Did I mention I’m not a big fan of sandwiches? Not really. Less and less. To be honest, I’ve missed my kitties, and the thought of neglecting them so much was hurting my heart.
100.4 is the magic number. I think Dom took his temperature a couple dozen times. 99.1, 99.6, 99.8, 99.4, 99.9, 100.1, 99.6, 99.9, 100.2 and on and on, up down, up. We’ve been told over and over if the temperature reaches 100.4, we have to call, and maybe return to the hospital. They’ve also told us over and over not to take Tylenol because it masks a fever. So, when we called at 100.4, the on-call doctor called us back and told us to take some Tylenol. I’m not gonna lie, I was happy to sleep in our own bed. Wait. Sleep? Did I say sleep? Not much of that happening. My guy was having a reaction to a drug and had a fever from an angry pik line. Sleep is quite elusive under those circumstances. But I did leave him alone for a while and cuddle the kitties. Or at least try too. It was 2000 degrees in our house.

I packed for almost every eventuality when we returned home last night. I decided that I was not going to get stuck in Sacramento without some long pants. My lap top charger. A tooth brush. The essentials.
I am an accidental tourist of sorts, as bags line the door way for our every coming and going.

The visit to the infusion center was far more exciting yesterday than just how special Dom is. I’m not quite sure what the reasoning is, but people with bad news at Sutter like to visit at the most inopportune times. It’s just weird. We spent 1 day shy of 3 whole weeks in a hospital. We had so much time on our hands, in the biggest room with the best view. But for some reason, when we’re squeezed in a tiny cubicle, and our nurse is trying to troubleshoot the special happening, two women from the bone marrow transplant unit think it’s a good time to talk to us about that. Hold me.

We’re already reeling from the news he has a fever, we may be stuck, we have to come back in the morning. We’re disoriented. It’s a new to us place. We’d received other bad news via email that morning; and these two turn up with a binder. A binder of shackles. I have to sign a contract that I will be my husband’s caretaker and will not leave his side, or if I do, I have to arrange for others to be with him. And yes, we do have to move. We were told we should consider finding a place to stay, just in case he spikes a fever. That’s an understatement. For two to three months, he has to report to the hospital or infusion center every single day. Every. Single. Day.
I’m not sure if this is the part in the roller coaster ride where we’ve been climbing and climbing and climbing and the ratchets pulling us up are getting louder, and slower or if we’re in that moment of not going up and not going down, or, are we just in free fall? If we are in a free fall, I cannot for the life of me find the bar holding me in.

It’s all of you.





Thursday, July 06, 2017

Home sweet home

Breakfast has been served, and it feels more like a lazy Sunday morning. I don't know if I've ever cooked bacon in this house. But bacon was cooked, and breakfast was had.

We arrived early afternoon yesterday, and Dom was pretty overwhelmed, having not felt sunshine on his skin for 3 solid weeks. He donned a gardening hat and a mask and walked the drive, taking in all the sights and sounds.

We found a gift tucked in the door to the barn that made us both cry. Someone has donated such a sum, that we were knocked off our feet. I'm not sure if they want to be outed in name, so I'll just say we are forever grateful to them; and to everyone. Not just for money gifts, but for loving and caring for us.  Just returning home to my lovingly maintained garden, and well fed kitty faces was love.

And as we fell into our groove at home, it felt at times like I was the flash, or some other cartoon. I was buzzing around between house and barn doing all the things, and then I'd look at him just soaking in the sun, become human and check in with him. Then I'd go back to zipping around, and this happened throughout the day. He just looked so serene and I must have looked like a pile of clouds and lightening bolts.

I prepared the house, but one can never be totally prepared. There's still things I just didn't think about until we were in it. We just can't be too careful. I've said this before, but all the things that I allowed before, with the thought of building up immunity, just cannot happen right now.  I've washed my hands a thousand times, in hopes of keeping all germs at bay.

Dom just remarked that now the bed feels like a safe space. As ready as we both were to go home, he had really mixed emotions about leaving his cocoon of safety in the hospital.

We live on well water, so I've had to think a lot of our daily life through. I mentioned before we have access to reverse osmosis treated water. I have bottles of distilled water in the fridge ready for him. What I did not initially anticipate, is the fear of even brushing his teeth with well water. So, off shopping I went, with another list. I went to the aisle I've spurned so many times before. The paper-goods....I bought little tiny dixie cups for brushing his teeth with treated water, and a little dispenser, because I have to make things doable. I don't know why it conjured up images of the Brady Bunch for me, but little dixie cups in a dispenser is everything early 70's to me. And while I do not want to baby my man, his immune system is far more fragile than an infant's.

I sometimes wish at this juncture that we lived at my Grandma's. She is not alive anymore, but she is always vivid to me. She had allergies, so her house really was the bubble we'd need. Zipped up tight and clear of plants and flowers. Alas, we love our country cottage, and hope it brings emotional healing where it may fall short of convenient.

I went to the pharmacy also yesterday to pick up his home meds. I was that person. The one that has multiple prescriptions and they have to enter our insurance information because Dom is a new customer, and it takes a very long time. The line snaked down the aisle and I made myself smaller. But I got his meds. And again, thankful for insurance.

So today, he'll continue to enjoy home. He'll read what people have recommended, and relay to me ideas on the pursuit of health and a good diet. (I have several packets of information and tabs open on the neutropenic diet, which is for people with no immune system, and sometimes they contradict each other. So, we always lean toward what is more strict.) I'll be donning my cloud and lightening bolt suit to tackle the rest of transforming our home into a bubble.




Wednesday, July 05, 2017

Jiggity Jig

Going home. Round one, just about to put a bird on it and consider it done.

Tomorrow will have been three weeks since we walked into the ER.

Dom and I have been contemplating going home. We've felt so safe here, with routine checks of vitals, hand sanitizer by every door, and blood waiting to be infused each time he needed it. We're a little nervous to embark into the big, bad world.

We have had a very good nurse the past 2 days. Overall, we've really enjoyed everyone, (well, you know....), but Ryan has been especially helpful. I feel at times, like he's my college professor, because as I go over my list of questions for him, every now and then he says "good question," and I feel like I'm building up all the extra credit. (Because if you read the blog regularly, you know I feel like anything can be won by following the rules.) He has been able to answer more questions regarding home care than anyone else, and I've actually compiled a grocery shopping list, and know what I am cooking for dinner tonight.

Dinner tonight. I have not had to cook a single meal in 3 weeks.

Nervous.

We're mostly vegetarian, and now he wants the bacon and the salmon and cancer fighting warrior gets whatever his body wants to do its job properly.

I'm a clean person in general. I wipe the fridge down every week. I scrub out the sink. I soap the dishes up good. But, I also have a streak in me that says a little dirt is good for the immune system. I'll use the cream past its expiration date. I'll sometimes leave the bed unmade if the royal cats are having a snooze. So, in fact, I was puzzled the other day when my Auntie Carole told me I was blessed with the CLEAN gene. I did all sorts of mental gymnastics trying to figure out what CLEAN was an acronym for, until I finally had to call my other Aunt,  thinking I had some mysterious cancer fighting gene. I suppose in a round-about way, I do. I am a neat-nick like her brother, my Grandpa. I can't stand messes or dirt. And, in this battle, that's a necessity. We won't be using the cream after expiration. We won't be having cats on the bed. At all. Perhaps not even in the house. And the sheets will be changed every other day. Every. Other. Day. I have a couple sets of sheets set aside to go to Salvation Army. I'm bringing them back.

On that note, can I just vent a moment? Just a quick little digression. I've mentioned there is a refrigerator for family use. There is a note that says food is no good after 3 days and will be tossed. Captain Literal came and got me the other day because the date on my box was past 3 days. She was very unhappy with me that I had written dates and name on my bottles of bubbly water instead of using their stickers with name, room number and date. She wanted to throw away sealed bottles of bubbly water, and packages of string cheese because of the date on the box. Nothing was open, or left over or past its sell by date. Meanwhile, if you remember, I had thrown away the crustiest week old leftover food shortly before that. It felt like she was on my case only. It felt more that way after she left, and I went back in and there was tons of food in the fridge not labeled, not sealed, but somehow more okay than my bubbly water. I think she's an unhappy person. I think I won't miss her.

It will be so quiet at home without all the heads poking in all the time for various things. I'll savor the moments of quiet in the house without any white noise. The hospital air system is constant. It will also be a little lonely without all the friendly faces. We both want to visit with our friends, and also are terrified of any germs. If he picks up anything at all, it is a trip to the ER and a delay in treatment. We don't want that. I'm sure, as we get our bearings, we'll calm down. But for now, we just want to hunker down in a hidey hole. I think it's why I've resisted visiting the many friends nearby in Sacramento, who I would love to see.

I miss my friends. I miss my community at yoga, and of course I miss the yoga. Thankfully, I am a teacher, as I will be teaching myself in the foreseeable future. 

Though he is the one with the cancer; and I'm so very sorry for all the strength Dom will have to summons to see this whole thing through, we are definitely in this together. It's kind of our full time job right now. I will work from home as much as possible to continue to earn income, but we're both on hold until we can beat this thing.

So bring on the tinned food, the Netflix binges, the Clorox bleach wipes and gentler vinegar wash. We're headed home shortly. Just long enough to get settled and repack for round two starting on the 11th. And away we go!