Saturday, July 21, 2018

The low low down

We like this journey to Tahoe much better than the journey we are currently on.

This morning, we decided together that we'll put it out there, a more clear picture of how Dominic is doing. You couldn't support us more than you already have, we've been so blessed. And I hate to weigh other people down, especially with family being so far away and feeling a bit helpless. We've struggled to know how much to share and how much to hold back. But, this is where we are. And NOT where we're staying. 😉 We== W
The combination of steroids and pain has ravaged Dom's body. He has lost over 40 pounds since May. He has also lost mobility due to such extreme weight loss and fatigue as well as muscle wasting that is a side effect of the steroids. We left the hospital in a wheel chair that one of our friend nurses found and gave to us. I think someone left it behind as it was missing the foot rests. The day we left, an aide jerry rigged a blanket to hold his feet up. This is in part why my mother's help was so tremendous. Me learning to open and fold a wheel chair and help him out of the car, with a jerry rigged foot rest. Wow! What an adventure I never would have signed up for, but since we're here...I'm all in.
We were given the impression we'd be given a wheel chair when it became apparent he'd need one, and didn't find out until the day we left that insurance wouldn't cover it. I bought one on line that was delivered to our hotel yesterday. So. Now we have 2! The foot rests on the new one fits both chairs, so we can choose whichever is more appropriate. (Different wheels on each). He's talking about taking the big wheeled one outside so he can get an upper body work out.
He also left with a walker, so picture me looking a bit like Dick Van Dyke in Mary Poppins with his one man band set up. I'm totally channeling that chaos energy as we make our visits to the infusion center. (How I wish I had Mary Poppins' bottomless carpet bag. That would solve a lot of problems.) As it is, I pack a bag with all our electronics and things we can't leave in a hotel in addition to files from work. I also pack a bag of necessities for him. I've got bags poking out on all sides and I'm carrying his walker while pushing him in his chair. We bring his walker so he can choose to walk or ride. He usually manages a bit of walking, but it's important to have a fall back. I made quite the entrance to the infusion center this morning with the new foot rest that I promptly rammed into the door jam. Thankfully, no damage done to Dom....but....extra length of chair, noted. I also laugh when I'm embarrassed/shocked/overwhelmed/worried/all of the above. Lots of necks jerked as I nervously giggled my way through the waiting room, literally hearing Bert's flat two note horn punctuate my shame
This is how crazy this whole thing is....before I left the week before to go home and pack, he was being discharged with a cane and a walker just as a precaution. In just one week, he slid back so far as to necessitate the wheel chair and hotel stay. I can't decide if I feel like a frog in slowly heating water, or if I'm shocked from jumping into an ice cold lake. I'm both?
He's very low, as anyone would be who has been through what he has been through. And, of course, the World Cup is over, so I just don't know how to entertain him right now. I'm so glad we're out of the hospital though. I think the anticipation of leaving was giving him anxiety, and bringing him even lower. As I mentioned before, I was also fighting against the nurses compassionately letting him not get up and walk. The prospect of leaving was definitely scary for both of us, as we'd only have ourselves to rely on. He did have a moment in the hospital where he had to be helped up. He couldn't clear a step in the shower and crumbled. We won't have that kind of help in a hotel. I still felt totally ready to get him out of there. I just know that the true healing won't begin until we're home, but being out of the hospital is the first giant step. 
There are so many logistics to this situation, sometimes I feel like a dog chasing its tail. For a while, it felt like an option to choose between renting a hotel room or going all the way back home. But, over the course of his last week at the hospital, it became clear that he can't handle the daily commute and a hotel was no longer an option but a necessity. I remembered all the endless searching on airbnb from before and just went straight to a hotel search. (I've since searched airbnb and nothing will work just now.) I am being budget conscious as well as mindful of our needs. We landed at an Extended Stay as it has a kitchenette and I was able to get a room right by a wheel chair ramp. Again...the dog chasing its tail. Things happened fast here and I was making decisions somewhat on the fly. When I made the decision to book at Extended Stay, there was still a possibility that Dominic could walk to and from the car with his walker, just not step over curbs. And I did not yet have an inkling of actually owning a wheel chair. (Let alone two!) Now that we have the chair, it frees me up a little as to where we'll stay. I would have possibly chosen something a little nicer if I was not concerned about long hallways and if he could eat from restaurants. I'd fantasized about room service and a hot tub while he recovered. Coffee in a styrofoam cup is about as luxurious as it gets. No room service, not even housekeeping.
And we are not staying here! I'm so glad I only reserved for 5 days because it is gross! So gross! It was good to land somewhere anonymous. But we've found our way to navigate this new life now. I'm a little bit panicking over germs and have my bleach wipes out all day long. I had some other hotels lined up, but my friend Kim is opening her door to us, and we're moving on Monday. I'm so grateful. I'd been concerned about several things bringing a nearly invalid person into someone's home, but she persuaded us. It will definitely be challenging to show up to someone's home with wheel chairs and walkers etc...but she's already cooking up some broth. So, we're in. And she might be an angel.

I was concerned also that the stomach pain is not going away. It's better, but still hurts. I worried that the treatment wasn't working, but was reassured yesterday that it will take some time before he's feeling better. I mean, that's not a reassurance, I hate that he's in pain, but I don't need to panic over everything right now. It seems by other signs that the ATGAM worked.

It's going to be a looooong road back. Gvhd is no joke. No joke. It's like we're experiencing a whole new disease and prognosis. And it's been the worst part of the whole experience. I guess we got a little too saucy after the transplant and he was walking miles every day. 
But we'll get back to that. Little did he know when he married me that I am a task master and there's no fetal position when our future is on the line. We are going to face this newest challenge head on. I have to dig real deep on this one. When I ran out for groceries while my mom stayed with him, I couldn't think straight at all. I was beyond exhausted from lack of sleep and the whole deal. I knew I wanted to make coffee in the room, and there wasn't a coffee maker. I have our aeropress with me, so all we'd need is hot water. I was so hitting a wall that I couldn't think about just boiling water in the microwave. I also didn't realize the hotel would provide a coffee maker. (Ew?) My friend offered to loan a tea kettle, and though she lives literally minutes from the grocery store, I could not even go pick it up. I spent $10 on a really ugly tea kettle because I was just that tired. That's what things are like right now. I'm trying to manage everything and meet our needs and anticipate our needs and it's like a moving goal post. Any extra decision I have to make or logistics can send me over the deep end. And yet, I must make them. I know people will have extra helpings of grace for me just now.
And yes, continue to pray for me!!! I know he's the one who needs all the healing energy. But. The couple across the hall from us was telling their nurse, (loudly enough that I could easily hear) that the wife had been bitten by a brown recluse spider. He was in the hospital receiving treatment, and she woke up in a hospital five days later after passing out from the bite. I guess there's still a huge open wound on her leg. Yikes! What an ordeal. Trying to stay healthy here!
I am getting abs of steel from helping Dom in and out of the car. Seeing as how I have gained approximately what he has lost, I'm happy to feel those muscles again. He doesn't recognize himself right now. I do. I still see him. I can't wait to have him back in all his fullness. I miss him not being in survival mode. Soon, this will be a distant memory. Until then, I am his lifeline. I will eat the chocolate and get things done. (Because I am also doing quarterly taxes for work in the midst of all this.) I will help him with his shoes, until he can do it again himself. I will lovingly prepare the smoothie, even if he just can't drink it all. I will carry the bags and the walker and measure out his prescriptions and do whatever it takes to get him back in the real world again; to get him back in his body and to get us back home, and celebrating with you. 

I can do all things.
But I could never claim to do them alone.

Friday, July 13, 2018

Drowning. Also. No one listend to Cassandra.

I am drowning.
People remark how strong I am, but I know the secret truth.
I am not. I am like a rear view mirror. Objects in mirror may appear closer.
Objects in stress may appear stronger.

I cried as I walked through a market picking up some microwavable rice for Dom's discharge and life with a hotel microwave. The store, World Market, sells both food and housewares. I had $10 to spend in rewards, so I decided to pop over and use it or lose it. Everywhere I looked were signs of summer. Grilling supplies, outdoor umbrellas, chairs and pillows. It hit me hard that this is the second summer we will spend in the hospital, or in the infusion center. Dreaming of summer and cookouts and balmy nights got me through last year. I'm not sure I have it in me to dream anymore.

I'm salty right now.

Really salty.

Worn out.

I'm an empathic introvert. People don't think I'm an introvert because I make eye contact and smile and say hello and am able to engage in conversation. I'm able (most of the time) to meet people where they are. It doesn't mean it's easy. It just means I highly value being met where I am. I value kindness. I value people.

It's a mixed bag here. On the one hand, I enjoy the community. Seeing familiar faces is comforting. The energy is always different, every day, depending on who is working. It's fascinating to me how much I reflect back that energy. It's interesting watching how people work together. There are nurses I really enjoy on a personal level.

On the other hand, a parade of faces peer into our room at all hours. I try and look straight ahead when walking the halls. Try. But those windows are just begging to be peered through. And I realize that, having the personality I have, I take it all in. All of it. There's no down time. None. If I need to use the restroom, it often entails meeting someone in the hall. Sometimes it includes a knock on the door. Want coffee before talking to anyone? Not a chance.

It's not just the nurses who color our day. It's the aides as well. While we love everyone; we have our preferences. There's one woman who just can't not be in here. She looks at us through her glasses and scrunches up her nose and asks me if I'm sure I don't want her help too much. Dom and I laugh that she just must really want to bathe him....and I playact how she'll approach him to do this. I know. I can't be nice 100% of the time. I'm sharing this because I'm mean and spiteful and she crept into our room in the middle of the night and moved my hospital supplies by the sink, throwing things and taking things away that I have left there with intention.

I want to share funny stories, but they would be too crass perhaps. Too off color. You'd have to be as far deep in the rabbit hole as I am to even find them humorous, because an outsider would probably just be freaked out. Or scold me for one reason or another. The last thing in the world I need right now is someone policing my feelings. But that's what we seem to be wired to do. We feel the need to make everything okay, it feels better to feel like we've contributed by offering up another way to look at things. But trust me now. A person knee deep in this kind of situation has had the time to look in all the different directions. Some days I look in the right direction. Some days, I don't.

I find humor in so many places. I need all the humor I can find. But, to retell would mean throwing a nurse under the bus, or even Dominic. I guess I'm okay throwing a night aide under the bus.
I sensor myself on the blog a lot, and think maybe I need to write some private posts just to myself. I would probably swear. A lot.

I wish I felt more free to share, but again, my personality is to protect everyone. So, I won't tell you what I took a picture of last night. I'll just leave it at that.

I waffle in this in between land of wanting people to know just how very desperate this situation is, and not wanting people to know. Every time I think someone close to me has grasped what is going on, I may say basically the same thing in a slightly different way and then they're shocked. It doesn't irritate me, it reminds me that I have a unique view of what's going on, and it's my curse and my gift.

And speaking of that unique view.....I have written about this before....the name I was given...Cassandra. In Greek mythology, Cassandra told the people what would happen, but they wouldn't listen. I don't feel like you, dear blog reader are the people. Sometimes, I feel like the doctor is the people. From the start of this gvhd journey, I feel like I've expressed concerns, and it's taken too long to have them addressed. All along, I've tried to be a strong advocate, but sometimes, hindsight is 20/20. I've begged for help time and again because sometimes old information becomes new information and I need to start over and get the nurses on board with pain management. The nurses tell me I have to get him to walk, and I nag him to walk and the nurses come in and see him and tell him it's okay if he doesn't feel like he can walk. And I gnash my teeth and gouge my eyes out because this is not sustainable....

And so I eat chocolate. And some times, I'm really salty.
You didn't think I was perfect did you?

As one of the housekeeper's just said when I shared my opinion of a hard truth; thank you for keeping it real.

 Cassandrain front of the burning city of Troy at the peak of her insanity.
By Evelyn De Morgan - Flickr, Public Domain,

Here and There or There and Back Again

It feels like I've been writing the same chapter, and I am really antsy to move on to the next chapter. We started to live it, and then got knocked into some other odd and unanticipated place.

I lie.

We knew going into all of this that there were very real possibilities of complications in this. But, we chose to not factor them in. Because who wants to plan on bad things happening? Who wants to plan their life around the possibility of bad things happening? We just spoke positively throughout, and hoped we could buck statistics. But, that nine out of ten match caught up and no matter how positive we were and are, there's realities that move on a different plain than the power of positive thinking.

I have no idea at this juncture how much longer his stay in the hospital will be. It could be weeks yet. It even could stretch to months. There's really no telling in this situation. The thing is, he's being cared for and, given our experience at home, he's happily here until it's time to go home. There's no looking at the time and pushing to go home. And in that regard, he's been so strong.

We've treated this stay a little differently. I've gone home periodically, because this is more a marathon rather than a sprint than any other time. I can't bring myself to share all the lows we've experienced. Suffice to say, we've scraped the bottom, and then gone a little lower. He and I are on the same page that I need to nestle in at home on occasion just to regroup and gird myself up for the next battle. Flexibility is key, as I've already shared the story of evacuation, and there's been times I've been home less than 24 hours because things have come up, and I just need to be by his side.

That said, home is such a beautiful respite for me. I miss him terribly and sleep on his side of the bed. I look forward to the day he can sleep there again. But I also see the gift of being home.

Home is a bit of a blur. I want to do everything at once and sometimes do nothing at all.

I've kind of fallen into a rhythm where I get all the dirty work done right away. I started mowing some more tall weeds that sprung up at 7 am on Saturday morning. I continue to cut branches up to at least 3 feet off the ground, if not higher for fire safety. Raking is a never-ending task, and I actually had an urge to rake which was stronger than my urge to chat with my mom. If you know anything about my mom, you should know she is a saint at being on the phone with me endlessly. For me to cut a conversation short because I've picked up a rake means I may be compulsive. I just want to get as much done outside as I possibly can, and then clean up and putter a little.

I've managed to keep my garden going this summer. You would laugh at my MacGyvered sprinkler system. I've scrounged up hoses that have seen better days, and I've lined up the holes to hit random plants. I hand watered everything before this situation. This year, I have a cherry tomato that survived through the winter and is bearing again now. I have an early girl bowed low with tomatoes that I can't wait to try. I have another cherry tomato plant in a large container that I kind of haphazardly placed somewhere meaning to move it to a better place. I never moved it because I think it was a happy accident. It's massive and loaded with green tomatoes that I hope will ripen up perfectly. The pumpkin patch is full of mystery squash and the lettuce has shot up. I ate a salad of lettuce and cherry tomatoes from the garden last week, and it was gratifying.

I have a patch in my back yard for my hoarding tendencies. If I think there may be a spark of life, I can't get rid of it. Dominic used to work for a company that would give away or raffle off plants that had been used as props. A great deal of my plants are from that exciting time. He brought home some tired Easter Lilies 2 years ago, and I just turned them out of the pots onto a patch of ground. *I did not even dig a hole and bury them.* Sometimes, I just want to see how badly a plant wants to live.  I enjoyed one bloom in the house over the weekend, and there are several more to follow. They really wanted to live.
If those Easter lilies dumped on the ground and largely ignored can bloom, I am sure Dominic, lavished with love and careful medical attention will bloom with even more beauty and tenacity.

In some ways, it's been an incredibly lonely time. In other ways, I've had people meet me right where I am so unexpectedly. I realized the the other day, I tend to cry on the phone, and then not in person. It was odd to me, that whenever a particular friend called to check on me, I'd break down, but when I get to visit with her, no tears. I think, and I'm not sure, because this whole experience is crazy, but I think that my time with people face to face is so precious to me that I fill it talking about things that matter deeply to me. It feeds me to talk about the great mysteries of life. It also feeds me to hear about what my friends are up to, how they're doing and what challenges they may face.

I so very much appreciate my friends that have reached out to me. Here's some more heart on sleeve raw honesty....I sometimes wonder what kind of a person I am that some people have so easily walked away from me. Over analytical people like me are prone to those kinds of thoughts. There are people I thought would be more present. There are people I thought would actively reach out to me and move heaven and earth to come sit with me. To physically sit with me and just be. There are people I thought would at least check in once in a while given similar circumstances. And if I'm really tired, these thoughts get me down.

But! Even as worn out as I am, I am looking on the bright side. The bright side is, a friendship has been restored that has carried me so far through this. I'm sure people are afraid to reach out to me, but when she called me after a particularly difficult update, she waited a day because she didn't want to bother me being sure my phone must have been ringing off the hook. It hadn't been. And I am so very grateful to this friend for being so sensitive to my needs both perceived and real. She's been able to meet me in my spiritual quest for answers, and some of the best advice was the same advice given to her 10 year old son also. Sometimes, there is beauty in suffering. I am seeking and finding the beauty.

I am so grateful for the friends who have rolled with my waves. The childhood friends who heard me say I need attention, and showed up. With chocolate. The ones I know will hold me up. I am so grateful for the cousin who calls me regularly and is more like a sister. The private messages checking in on me, giving me the space to bare my soul or just go to sleep. I'm so grateful for the nurse who has seen me as more than a caregiver, but as a person worthy of getting to know, and the wonderful conversations we've had along the way. She's been such a bright spot in a difficult time.

I mentioned above, it feeds me to talk about the mysteries of life. I've been thinking about a Nouwen quote I shared on social media. He talks about how it can be hard for people to be present for another if they can't do anything anyway. I realize what Dom and I are experiencing just seems like an abyss no one knows how to even approach. Coupled with our previous need for a bit of isolation for safety precautions, it has left people hard-pressed to know how to be present for us outside of facebook. If this brings any freedom, know this: There is nothing you can do. And, don't get me wrong, many people have done amazing things. We've been generously donated to since work has been impossible, we've been given the gift of house sitting by our neighbor, we've had fields mowed and treats given. We've been given a lot. But not one of those things take away the need for medical intervention. Not one of you has the power to physically heal him. And, I hope you can find freedom in the fact that the only thing you may have to give is yourself. You needn't change anything. You needn't have the magical answers. You needn't even worry about saying the wrong thing. Presence is everything. Real presence. The ones I know I can PM and I will shortly receive an engaging response from; that is an eternal gift to me. All of your encouragements, every heart and note of love gives me the strength I need to make it another day.

Saturday, June 30, 2018

Just when I thought I couldn't go further down the rabbit hole....

I believe it's known by now that this blog is mostly my own cathartic place to share our experience. In the back of my mind I also hope this can someday be an encouragement to others going through a similar experience.
Today will not be that day.

Here is the view from my new recliner/bed:
Don't be jealous.

I was having a difficult time deciding if I should go home tonight or tomorrow morning. There's a high fire danger advisory and after having fire come practically to our front porch last year, I'm a little freaked out. I like to be home on these really hot days so I can be on red alert. It gives me the illusion of control.

But Dominic asked me to stay. And so I stayed.

I haven't showered in two days because I thought I'd be driving home this evening. Then, when he asked me to stay, I decided I'd go downstairs for some dinner, grab a shower and tuck into bed for an early night.


Thant was not to be.


The fire alarm went off. But for real. They have drills all the time, but this time it meant business. Even though there wasn't a fire, the alarm was screaming, all the doors were shut and the sprinklers went on in the room across the hall. I tried to mind my own business as I heard the nurses screaming "Oh my god!" "How did that happen?" "Here's the eyewash, quick, bring him over here." But as I saw more and more employees gathering outside our door, I had to peek.

They were grabbing blanket upon blanket to staunch the ankle deep flood of water from the room. They did a good job too, because it didn't reach our room. The turquoise and white blankets were piled literally to the knees.

Nevertheless, we had to be evacuated. They told us we could go in the family room around the corner. So, we went and sat. And sat. And sat. Dominic has barely been able to sit up for the past month, and he sat. People would check in on us. People would ask if we needed anything. A room with a bed maybe? I cannot imagine if I had gone home. Who would sit with Dominic?

Someone told me they made him a fresh dinner. since the first had just been served minutes before evacuation. But he couldn't eat yet. Too shocked I think.
After sitting for nearly 3 hours, I finally convinced him to eat a frozen meal I had in the family room. I'm so glad he did, because by the time we got to a room, that promised second meal was also taken away. They would have brought him food but.....things were pretty dicey by this time. (I'm sure the nurses would move the moon for us if they could, but there were just too many unknowns. Some of the dayshift nurses stayed until we settled in a room which brought their day to 15 or 16 hours.)

We were alone in the family room. A Russian couple were with us in the beginning, but they were taken to a waiting room somewhere else. The rest of the patients got to stay in their room with doors closed while all this was going on. Just my precious Dom plopped on a couch. He and I are very close, but I can't even tell you what was going through his mind sitting there wrapped in a blanket.

We were informed the whole unit would have to be emptied for cleaning and testing. They would be distributing us into the ICU. Also known as germ central. The rooms had to each be sanitized by the little robot I wrote about before. The little germ killer. That was time consuming. There was a lot of confusion. Shift change was happening, and nurses were trying to nurse and figure out what to do with 16 or so patients.

Here's the thing. I had to get all assertive again. I do not like rocking the boat. Dom hates rocking the boat. But what I don't like even more is watching my guy stare into space because he's usually catching his first chunk of sleep by 9:00 at night, and instead, he's got a blanket around his shoulders and he's sitting up till who knows when. So when they tell me they're taking the patients in waves and Dom's in the third wave I freaked out a little. "So you're telling me that the patients who have been in their rooms, in their beds this whole time are being transferred before Dom, whose been sitting for the longest he has sat in weeks?" This is what they were trying to tell me, but I was not having it. I don't want special treatment. But come on. You've got one patient not waiting in his bed. Take that patient first.

I also had to fight with the nurse from the new unit about getting our stuff. She asked if there was anything we needed urgently, and they'd pack up the rest for us and bring it over. Um. No. I've got it, I said. But it needs to be cleaned she said. Cleaned? No. I will get my stuff thankyouverymuch. My favorite nurse and I just couldn't figure out what the deal was. It was if she thought our room was the one with the sprinklers? So, I marched back to the room and grabbed all our stuff. It's that illusion of control thing again. This day/month/year has been such a mind bender that carrying my own stuff from one unit to the other was my security blanket of control. And that's that.

They finally decided it's Dom's wave and they wheeled him through winding hallways and into a huge room with giant sliding glass doors and I'm going to be super morbid here, a huge digital clock with red lit numerals directly over the head of the bed, and it's the clock every doctor looks at in every doctor television show to pronounce the time of death. Ew. I'm not happy here. A plane is getting ready to take off, also known as a HEPA filter on full blast. We have to yell at each other to be heard.

There's no lav. (I stand corrected. After writing this, the nurse took care of some business and rolled open a cupboard to reveal a dinky little toilet. It had every appearance of being an airplane toilet, including a giant push button flush. It's all tucked away behind a curtain. Not a green curtain. This is certainly not Oz.) No shower either. It's a huge room, but it's crowded with arms coming down from the ceiling with wires and monitors and such. As huge as the room is, we found ourselves shimmying around as we did whatever needed to be done for Dominic.
There's no cot or couch. No bed for me.

After hours of waiting in the cold family room, exhausted, there's no bed. (I know, I know...I've been spoiled that they've had a bed for me at all....)

Rule number 2: No sleeper chairs or cots in the rooms.
I already broke rule number 1: No eating in the rooms.
Once Dominic was settled in his new bed and slipping into sleep town, I went downstairs for dinner. At the fashionable hour of 10:30. I brought back my box of salad, plopped it on his bedside table and began eating...only to have him wake up and point to the sign. Oh well. If ever there was a time to be a rebel.

We have our favorite nurse, without whom, I swear I'd be having a major meltdown. We love her. She loves us. I can be snarky with her and it's all good. We just laugh. I think she appreciates the irony of me staying the night because as it turns out, Dom needed me more than we even realized tonight especially, and yet the circumstances are not so conducive to having a caretaker. There is no way I would be okay with him sitting in the family room for 3 hours alone. No way. I really needed to be here tonight. And, on a less important note, I needed to be here to pack up his clothes and drinks and accumulated belongings from his unexpected weeks upon weeks stay. In every way I was meant to stay here tonight of all nights.

And there is no bed for me.

But, our favorite nurse is a rebel too, I guess, because she at least managed to smuggle in a reclining chair and some linens.

So, here we are. It's morning now. I watched the sunrise from my recliner. I think I got two hours of sleep. For all the drama, Dom is actually chipper. He's got World Cup playing and he was able to sleep between blood pressure takings and what not. He's so fragile right now, this could have gone either way....but he's such the guy. The nurse is astonished he's still smiling and laughing.
Word is, he's being moved back to the unit today. It cannot be too soon, as ICU makes me so nervous. Seeing Mersa signs on there Mersa in that room? Or are they just testing? I don't know. I've felt so safe over in our BMT bubble.

I'm really just probably quietly hysterical right now. It is astonishing that I have had to "evacuate" twice throughout this process. Once I thought our home was going to burn down, and we had to find a place to live for a week. And now, though it's not nearly as dramatic, I'm definitely going to need some chocolate.

I'm definitely looking forward to quiet days at home with my guy feeling much better. Until then, maniacal laughter at how absurd these days have been.

Thursday, June 14, 2018

Marking the last day of normal~

Today marks one year since the last day of normal. One year ago today, we were both busy working and life actually seemed near perfect. We went to bed concerned about the mysterious bruising and that was the last time we slept in our bed in our old life. I did have an ominous feeling that week. But, I certainly couldn't begin to imagine how life would unfold this next year.

It feels like yesterday, and it feels so long ago.

In those first days, I'd imagined that by one year, we'd be back to normal. Of course in between imagining we'd be back to normal, there were moments of terror that things would never be the same.
And putting one foot in front of the other, we have handled more than we ever imagined we could handle. That first week in the hospital, I couldn't imagine spending a whole month in the hospital. I couldn't imagine putting our life on hold for a whole month. And now, it's a year. By my calculations, Dom has spent nearly exactly half a year living in the hospital. I could never have wrapped my mind around that the first week. But, time has a way of preparing us. And there's really no manual, no friendly word of advice that is better at preparing us than time.

The very first nurse we had was pregnant when she met this completely shattered couple. I just ran into her in the hall for the first time since then. (If you remember waaaaaay back almost a year ago, I shared how they moved us into a new room literally in the middle of the night, and Dominic had his first ride in a wheel chair that may have felt a little more like teenagers pushing each other in grocery carts down dark alleys than a grievously ill patient in a wheel chair. We moved to another ward and never saw that nurse again.) I asked the nurse about her new baby, which is now already 8 months old!!! How can that be? This little life that wasn't even in the world when we started is now probably crawling. 

And the little one that I was helping out with is a whole year older. The little baby I just adore has turned into a little girl, who loves to go to preschool and thankfully, has not forgotten her auntie.

Since we first entered this hospital, they have opened a cafeteria. It opened 3 days after we were discharged from the transplant. Is that a silver lining to returning to the hospital unexpectedly? I get to check out the new cafeteria? It's a pretty thin silver lining, but I'll take it. I do feel weird eating from the salad bar, when I have avoided public food nearly a year now. I'd think a hospital would be the last place I'd want to dip into the trough. But salad. I need green in this land of beige.

Reflecting on the first months here, I am astonished at how timid I was. I realized there was a Starbucks just one block away, but I couldn't leave Dom's side long enough to find it. I think I also felt like it would be frivolous given our circumstances. But there it was. Right around the corner, and I never visited. We found a gluten free bakery that was just two blocks from our temporary home, and about 1.3 miles from the hospital. I guess it's well enough that we didn't know it was there until he was able to eat outside food. I walked there last weekend from the hospital and bought some treats. I reflected as I walked that day that the first week I had been lost and driven down that very road, and it felt so foreign. And now, I was walking there, feeling at home.

If the cafeteria is a thin silver lining, the thick silver lining is the way we've been held throughout this year.

There are people we can never repay. There are gifts in suffering.

There are people who have met us through all the twists and turns. There are people who were only quiet until we needed them and then they were johnny on the spot. Through the wonder of technology, I've met so many amazing people. I got to bond with my sister in law, though gosh I wish it could have been another way. I've reconnected with long lost friends who have brought so much to me. We've made new friends on this journey and Dom's been so fortunate to connect with mentors who have walked this path before him.

Dominic and I have also had long interesting discussions about spirituality. Sometimes, those discussions don't happen when life is "normal." Being the person I am, I thrive on deep discussions, and delving into the deep.

So, today marks the new normal. The new normal is, Dominic and I have a new appreciation for life. We have a new appreciation for the human body. We are able to weather the storms with a little less angst and a little more courage. The new normal means I'm going to be real open about how things are, and it is out of my control how other people receive me. The new normal means I have it in me to step up and gitter done. I'd rather be taken care of and pampered and only break a sweat in a hot yoga class, but now I see, I can start an engine on a burly weed mower with a pull cord, (which is no easy thing) and push that beast up and down hills. I will admit, my new normal does not include driving the tractor. At least not yet. And that is why the new normal also includes receiving with so much thankfulness so much help that we are both so humbled by. We never ever could have done this on our own. The new normal is remembering with greater clarity we are never alone.

Friday, May 25, 2018

Practice makes perfect

Just as we had begun to reach some sort of normalcy, some hint of a little more freedom, it's back in to the hospital.
Dom's beep, beep, beeping through the night, and thanks for the reminder seestor, I'm shooting several panicked glances toward the lock in the public restroom that opens directly to the family room.

It's hard to believe, it's been nearly a year since this whole thing started. Just 3 weeks shy of. We haven't been in the hospital for 5 months and we've been home for 3. After 7 1/2 months of being back and forth between home and hospital and even fire refugees and another 2 months living in Sacramento, I realize we spent collectively nearly 5 months not in our home this past year. And adding days as I type.

I have so many mixed feelings. My strongest feeling is utter relief that professionals are taking care of Dominic. For two weeks I wondered what to do. Should I make him eat? Is eating bad? When do I call the doctor(again)? When will it stop? It was a grueling 2 weeks of sickness for Dom. Being already spent emotionally, having scraped my account over the past year, I was at my wit's end.

So, while we'd rather be home, we are both so grateful to be more directly under the doctor's care.

There's no sign on the door that declares chemo or transplant. The nurses no longer glove up to protect themselves from chemo poisons coming out of Dom's body, though they do still glove up for hygiene.

And I find that after nearly a year of this business, I'm also flowing a little more easily. I'm crying more easily as well, but of course. It's an entirely different thing to be admitted to the hospital with a diagnosis looming and the not knowing when he will have a transplant, and then will the transplant take, and then where will we live in another city....? This feels easier, but it is still excruciatingly difficult.

I spoke with the social worker just after our arrival, and she asked if our room was okay. She knows I prefer a cot over the slippery slidey couch bed. I thanked her for her concern, but told her it's fine. This is just a blip. It could be a long blip yet, but we're on the other side. There's so much relief being on this side of treatment. (I've also figured out that if I shove a couple pillows between the slippery layers of the bench of the couch and the fold out cushions on top, I am nestled in and prevented from being deposited on the floor.)

I don't totally understand the human mind and the plasticity of thoughts. Fears do creep in. We're on the other side, but that assumes there's "sides". It's not as simple as all that. There's still biopsies to be had, still the body adjusting to the new stem cells, still the body dealing with the aftermath of a chemical cocktail of chemo so strong it could kill. Still the stress even of recovery time. I still find myself worrying and whatiffing, and I have to actively banish any thought that only serves to panic or wear me down.

Tomorrow brings with it whatever it will bring and it is absolute hubris to think that any bit of my worrying will take away any challenging thing. And so, I try and dwell on what seems good. Of course, that's also an interesting balance. You see, I'd been been dwelling on the fact that his White Count finally went past that scary place it had been for months. I was dwelling on the fact that he could finally eat blueberries, (which he did) and we could maybe have some friends over for a meal, and I could finally visit my friend with all the kids or attend a yoga class, and maybe some friends could come and see how they began a cleanup that I would continue and we could marvel at all our hard work and enjoy a relaxing day. And's a funny place to be, hopeful and yet not overly disappointed when I realize that all those things will be on the back burner again. It's a dance; building a future and holding it in my hand with open fingers so whatever needs to slip through can. And whatever does slip through, all in good time, I can pick it up again, if it's right and good and worth while.

I guess what I'm trying to say is, it's an art to be hopeful in the future, grateful and present in the now, and not too disappointed when things do not go as planned. It's an art I haven't mastered; but I suppose practice makes perfect.

I will be back and forth with a little more freedom this stay. I have to keep our life in a forward motion right now. I never wanted to leave him when everything was looming. I never wanted him to feel alone in the darkness of chemo and the mystery of transplant. And I could not leave him alone for long in the ensuing months of low WBC. It's no difficult thing to be so tethered to him, since he is my love and best friend and joy to be around. But he's in good hands. I'll look forward to us being back home together. We'll hopefully pick up where we left off, and continue to look forward.

Thursday, May 17, 2018

Cultivating the space you have

It's been over two months since we've been home now. The time to write is thinning. But sometimes, when I'm doing the other things, the words are swirling. If you follow the blog to keep up with Dominic's recovery, there's probably not much new information here. It's a slow, up hill climb and we celebrate every victory.

Today's thoughts are not necessarily about the journey, though the experiences of the last year contribute to them.

I spent this morning with the strimmer and a rake. As you know, who have followed this saga, not only did we survive cancer this past year, we survived a fire that crept right up practically to our doorstep as well. I am constantly in awe of the symbolism. And I've been on a dual pronged quest ever since. The quest to keep Dom healthy in body and soul and the quest to get our home as fire safe as possible. I've referred to it prior to the fire as our little match box; but I do not want that to be the case!

I've shared before how I tackled a lot of shrubs and I've been mowing and cutting like crazy. There's a pile of lumber too near our little house and I've hated it for 20  years now. About a decade ago I filled up one of those huge extra long chevy creeper vans to the roof with old wood for the property owner to take to the dump. He asked if maybe next time I leave him some room to breathe. It was literally wedged in to the top. But over the years, I watched as various improvements on the ranch included various offerings to the wood pile. And it swelled again. Dominic and I took another load to the dump a couple years ago....and I watch the wood pile grow again. It's like it breeds.

My social media friends know my Mom and I had a rattle snake encounter last week. There he was, (for the snake rescuer told us it was a he), sunning himself in the driveway. My mom was walking up the drive from the barn and he gave her a good warning rattle and reared up at her. Once she backed off, he retreated to the underside of a cart. If he only knew just feet away was a huge pile of wood he could get lost in, and live in, and terrify me forever. Thankfully, he stayed put until Al came with his salad tong sized snake gripper and lifted the very angry snake from his refuge. I said goodbye to the snake (after I thanked it for clearing out some vermin for it was quite fat) and put it in my mind that the wood pile has to go. All of it. Needs to be gone.

It does literally need to be moved because it's too close to a propane tank. I watched a Cal Fire video last week that informed me that propane tanks must be cleared of combustibles at least ten feet. So, if it's moving ten feet, it may as well move ten thousand. That is a project for another day.

Today's project was inspired by the same informational video and where I'll get a little personal. They mentioned in the video that the undersides of decks should be free of leaf matter and twigs. I didn't intend to go back there and start raking. It just happened. Let me tell you a little about my dilemma. I am surrounded by oak trees. Beautiful, giant oak trees. I've done some research, and they don't like packed ground, and they don't like over-watering under their canopy during the summer, and they do like their leaf litter to decompose back into the ground for nutrients. It's a bummer for these big magnificent trees that my house sits right between them, I'm sure that would be considered packed ground.....And so, I'm very protective of their leaf littler now. But, it's also a fire hazard. So. What to do? What to do...

I tried to have a garden in my little back yard 20 years ago, but it was a big no go. Between the deer and the shade of sprouting oaks, it flopped. I dreamed about having a lawn and mowing it myself, but the whole no water under the canopy thing voided that idea. Basically, my yard has to be in its natural state. So, for 20 years, I've mostly ignored the space. It had an occasional weed trimmer come through. Once my mom raked all the weeds down. I think I was depressed and I think she didn't know how to help me except to do the work I should be doing myself. I think she hoped it would inspire me to work. But it didn't.

It took flames at my door step to inspire me.

So, as I raked under the deck and under the shrubs (that I don't water at all, and have ignored for 20 years as they grew from 3 feet to 9 feet, and that we massively cut back last month), I got to thinking there in the quiet with my rake in hand. I got to thinking as I pulled things out from under the deck that I knew blew under and I just ignored. I got to thinking in the unruliness of it all.

It couldn't do what I wanted it to do, so I let it go.

Not in the Frozen Elsa kind of way where I relaxed in a good way.

I let it go in a Sanford and Son kind of way.

Is that hitting you in any way close to the ton of bricks that hit me?

It couldn't do what I wanted it to do, so I just let it go. I ignored it. I closed the door on it.

I allowed refuse to pile up.

And as much as I love nature and the outdoors; it is good to keep a grip on home.

I thought today as I raked years and years of leaves how easy it would be if I'd done this each year. I thought about all the years in my own life that were left uncultivated because they didn't look like I wanted them to. If I could have accepted that even though I can't have a lawn in the back, I can keep it neat and tidy and rake the leaves and tend the space, I wouldn't have such a daunting task ahead of me now.  And then, I came in for a water break and sat down and started writing.

The thing about this past year is it's put some incentive in me I didn't even know I possessed. It's too bad it took nearly losing my husband and my home in the same year to give me a kick in the pants. But, here we are.

Visually, the back won't be too much different than any other time. The weeds will turn brown in the summer, they'll grow back in the winter, and (now), I'll mow them down in the spring. (Instead of waiting for them to just dry out and fall over.)

But, there is a path around my house again. For years, branches were in the way. Weeds were over grown, and it was just scary. It's mowed back, cut back and raked up. *I'm editing to add here: The day after I did all this work, the water heater putzed out. We had to have a plumber replace the water heater, and for the first time in forever, a handcart could freely be pushed to the back of the house, and not a day too soon. And so, the cleanup story takes a new turn.

Because, since the plumber needed more room to work in the little shed, true to form, I didn't just make him a little more space. I emptied the shed, cleaned it out, and put it back together after he left. When I moved in some 20 years ago, the shed held the owner's forgotten papers and detritus of life. Over the years, I've tackled it, piece by piece. With his permission, some ten years ago, I emptied the file cabinets and had a bonfire. Later, Dom and I flipped a file cabinet on its back, painted it the same color as the barn and planted tomatoes in it. Even though I'd cleaned out the cabinets, I still found a canceled check dated 1976 this week under a pallet. You would not believe what pack rats deem acceptable housing material. The shed is not enclosed entirely, so it's a dream home to critters. A heavy pendulum to an old clock had been carried from one corner to the opposite. I'm not sure how cozy a cold hard object can be, perhaps the critter thought of it as a shield.

All of this to say, that while there are things in our lives that need attention, sometimes we find ourselves cleaning other people's messes. Do it anyway.

And back to the great outdoors, the added bonus is a wild cherry plum tree has been discovered. When everything was overgrown, I'd never noticed the plum tree sprouting up. There were a few down by the barn, and I'm sure a bird dropped a plum by my house. Last autumn, in response to the fires, we had a tree guy come out and do some work to safeguard the house and preserve the beautiful trees. He opened the area around the plum tree a little, but I still didn't notice it until we moved back home and I saw blossoms for the first time. And, I'm sure you can gather, after this past year, all signs of new life are deeply meaningful to me. When my family and I cut back the saplings and brush, we opened up the space for the plum tree to really shine. Today, as I worked my way around the house, I noticed for the first time little cherry plums heavy on the branches. Literal fruit of our labors.

And I wonder how much else in life needs to be mowed back, cut back and raked up? Nothing like a little trauma to get one wondering. I can't change anything in the past, and I can't change everything today, but just as surely as I can walk on the path without getting hung up on branches or worrying every step that a snake is hiding in the weeds, I can tend to my life as it is. We can all tend to our lives just as they are. My journey may not include the lawn I'd always dreamed of. It may not be an English garden with boxwoods perfectly carved in the shape of animals, it may not have topiaries and fountains and rose bushes, but at the very least, it can be cultivated to be the best and safest place it can be. It was oppressive for a while. I felt like I had no say, that the branches were bigger than me and the lack of tidy edges and designated living areas ruled the day. But I found my clippers, and I got to work and I'm embracing everything for what it is.

Tuesday, April 10, 2018

Seems like it's time

We've been home over a month now and it still feels weird. It feels great, and it feels weird.
The white blood count has not budged, so we're still a bit isolated. I'm not looking up friends to catch up with just yet, and Dominic is still in full recovery mode.

I'm every day grateful so may people have supported us emotionally and financially, as I just had no idea how long this whole process would stretch. Dominic is chomping at the bit to work, but his body is still saying no.

He was able to facilitate hiring a day worker to come and do some of the work we normally do on the "ranch." I was happy to leave that to him.
My mom is also an incredible worker bee. She has taken hold of Dom's weed whacker and made a good dent. We had a mother daughter day, she pushing the mower and I got hold of a wand myself. The weeds seem to have been given an extra zeal for life after the fires. The field just behind our home that was burned to save our home grew I think 2 feet in one week of rain. It stands above waist high in some places. Little by little, we'll get it cut back like a new recruit.

I may have also gone a little wild. Brad and Dominic have bees behind our house. Brad started with one hive and then brought Dominic on board a couple Christmases ago. We enjoyed the first harvest of honey last fall, and I can't wait until Dominic is free to sample the goods. (Honey is still on the no no list.) Bees seem to be very sensitive to plant poisons, so what to do about the poison oak growing in our back yard? I really didn't want to spray poison so close to the hive. So, with a wild hare, I woke one morning, dressed head to toe, rubber gloves, goggles and a mask. I hand pulled yards and yards of poison oak. I had no idea that a little three inch plant would be part of a system of root that stretched at least three yards. I folded it like Christmas lights as I pulled and pulled. I filled a large trash bag with poison oak, and dropped it in the bin, thinking it would be a nasty surprise if we still lived in Sacramento.
My gift of the task was a little bit of rash on my forearms where my sleeves had pulled away and a stripe from my eye to hairline where I'm sure my hair brushed some oak and then my face. Not too bad for getting the job done.

I still haven't returned to yoga since we've been home. I miss going and being in a dedicated space with the temperature cranked up. All in good time though. Skipping classes has afforded me more time to work outside. And heaven knows, this property we care-take needs lots and lots of work. And the risks of bringing home germs are just still too great.

New realities are setting in, and sometimes they're ones we'd like to run away from. They're definitely not things people like to talk about. I think on some level, Dominic and I saw us going back to normal a little more quickly. I think a lot of people have seen the 100 days that way. We thought after 100 days, he'd be right as rain. That hasn't been the case, and it's been an adjustment. As I mentioned above, the white blood count wont' budge. Yesterday it was at just 1. I feel like I'm beating a dead horse mentioning this, and then again, I find I have to explain this in awkward situations. This is the part of the blog that just gets so's the part where I'm not thinking about our support group as much as I'm thinking about someone else going through this in the future and how I can support them. It's not anyone's responsibility to know how dire this situation is. I cannot and do not expect people to understand what a 1 means for the white blood count. But, I find, I will have to get explicit at times. I will have to say no to things that hurt to say no to.

Here is what a 1 means:
A 1 means Dominic is incredibly fatigued. A 1 means he is so very vulnerable to germs. A 1 means he has virtually no immunity. A 1 means the simplest cold could result in death. I find I have to explain this to people who ask me should he not catch a cold because it will last longer? Oh, if only it were that simple! I'm sure Dominic would love to get back to his old life if the only repercussions were he may catch a cold that would last longer than most. With no immunity, a cold could take hold and lead to sepsis. At this juncture, this is not a mere inconvenience, it is life and death.

It's difficult to share all this and not feel like I'm complaining or scolding.  But, I am compelled to share this with the thoughts that this is bigger than me. This is bigger than my discomfort in over-sharing, or pride in holding it all together.

So, this is where we are after being home a full month. We still see the doctor once a week. He would let us come every other but for the low White Blood Count. Dominic has to get a shot every week to stimulate production. He gets poked first for blood draw and then poked again for the shot.
We had 8 am appointments the whole time until the tri-fusion came out.This meant we got there when they opened, we'd be scooped up into a private cubicle, we were almost always seated right across from the nurses station because we like to banter with the nurses and they like to remark on Dom's hair and eyebrows. We'd stay there until the doctor came by, and then we'd be off to home.
Now, we don't get there until 9 and we have to sit in the waiting room. The appointment times are not precise, so we sit and wait. We wait in the waiting room until the lab results are in. Once the results are in, we originally would just go to the doctor's office, but because of the need for shots, we go back to the nurses and get a shot. We've been so spoiled spending all our time in the comfort of our own little room surrounded by the nurses. This thing of being in the waiting room next to the humanity is new. Yesterday, the single mom wanted everyone to know that she should have special treatment because she's a single mom and it's hard. She was not there as a cancer patient. I am sure being a single mom is hard. Very hard. And we would have gladly given up our spot so she could be on her way. But I looked around the room at the people in line before her. Masks and green faces ready to be ill, people bent with age and unable to walk in a straight line. Perspective is an interesting thing, if one can afford to take the time and have some. Sometimes, we're so balled up in what is happening to us now, it's hard to re-frame.
And that is why it's so difficult for me to share my hard bits, my realities. For fear my perspective needs re-framing.

But here are the fun bits. The doctor doesn't seem phased at all by the low WBC. He breezes in, says yep, still low, still need to come once a week. Then some other topic comes up. Last week he asked Dominic if he got a hair cut! Ha ha! Dominic thought he was joking, and responded in kind and they both kind of stared at each other. Being the interpreter, I told Dominic he was in earnest, and we all chuckled awkwardly. One day, Dominic will need a hair cut. That day has not arrived. And, I am trying to coax him into a photo......not yet, he says.
Last week, I made him car sick the last leg of our journey home. He had to share this with the doctor which prompted stories of wives and driving and perhaps Dominic will be driving home from now on.

So, it's not all low WBC and woe is me. The doctor seems untroubled by this low count. All the other numbers look good. We just have to be patient. Is that why patients are called patients? We're so happy to be home. It's not back to normal, but it's also home. Our only upstairs neighbors are the occasional hyper squirrel and maybe a fox or rat....The peony is blooming! And the tomatoes are in. The cats are, well, they're cats. It's as if we never left.

We so look forward to connecting with friends. All in good time.