Boot straps

I have a funny little observation.
It's about the two posts I shared at the same time. One was sweet, one was salty.
I can see how many times the posts have been clicked, and ya'll should know: you prefer salty.

The next post was difficult to write, I'm sure difficult to read and definitely difficult to live! I've been working on this post, for over a week now, as a sort of antidote.

So, I'm going to dream a little today. Dominic is getting hours worth of infusions, he's comfortably bundled in a bed, and peering over his shoulder, I see he's looking at football stats. (Soccer for all of us Yanks.) That's a wonderfully encouraging thing to see.

A friend of ours is in Finland right now. (Well, was...I began writing a week ago!) It reminds me that something on my bucket list is to see the Northern Lights. Dominic dreamed of taking me to Paris all through the last year, and I wouldn't say no. But my heart leans toward the celestial just now. Or toward nature. Mountains and stars. The universe is vast and beautiful and bigger than this thing we're fighting right now.

You know I have boot straps. And you know I'm not afraid to use them. Again and again. Some days are hard. Lately very hard. But I can't live there!

So I'm working on picking up where we left off. Dominic and I looked at photos the other day. We talked about who he is, and how who he is today is not who he is. This is just an aberration for now. The nurse this morning got a little teary eyed as she remarked he is still just the sweetest man, even as he endures more than most will ever in their life have to. That speaks volumes.

I remind myself that this too shall pass. Not quickly enough, but just as nothing gold can stay, nothing this grueling can stay either.

But just because I haven't lost my sense of humor, I have to laugh. When we arrived this morning, the nurse said, "I hope you don't have any plans today." She must be joking...surely she must be joking! Our plans for the next several, several days are to get Dominic strong again. This is not a vacation. (Though I'm still dreaming of room service!)

And for all you salty folk, I need people to stop being so helpful. Just stop already! Does that make me the worst person ever?
Our first trip into the infusion center without Mom's help, I was just getting the hang of wheelchair, walker, bags etc...he and I negotiate between the two, because walking is ideal.  He'd just transferred into the chair, and it I felt kind of chaotic. So this helpful guy wants to hold the elevator for us, and I'm trying to get in with bags and an open walker and the wheel chair and I know I should have just waved him on while I pulled it together. But he insisted and I stepped in and found I couldn't move or fold up the walker because he stood right on top of me verbally giving me helpful tips about backing into elevators etc...So helpful. Maybe next time, just move?

And the nurses. God bless the nurses. How do they think Dom gets to and from his appointments? Because every day, they're full of nervous energy about whether the brakes are on (the brakes they are immovably standing in front of), or if I'm lifting with my legs, or if Dom can actually stand up. (He can). What would I ever do without them? There is constantly someone so worried I can't manage that they are just.in.my.way.

And the kids in valet parking. I'm so exhausted, my gracious plate is running low! They stand at the driver door waiting for me to get in and buckle up, and meanwhile, I'm unloading bags and folding chairs and walkers and I just need a moment. I don't need someone who means well staring at me. And I really don't need someone standing right at Dom's door staring at us. I told a guy the other day who was just hovering uselessly and I had just had bad news and he was breathing down my neck, I told him I just need to be, and I don't know, I drew an aura around me or something. Lots of hand gestures were involved because I really needed a moment. He shuffled away. I felt like a crabby old lemon, but I'm so tired. I don't need someone handing me things that I'm perfectly capable of picking up when I am ready, but that I just need to set down 3 inches over because I'm not ready for that thing yet. I don't want that right now. Do you not see me actually doing what I need to do? Is it not obvious I left the trunk open because I am not done yet? Can you not see I got this? I got this. I feel like a server with a tray full of dishes and glasses and some well meaning person puts a glass on to "help out" but the server has to gracefully hold that heavy tray and not drop it even though the careful balance has been broken.

I got this. Barely. But I got it. I'm going to keep on keeping on until there's no more chairs or walkers or appointments or drugs. Just Dom and I hopping in the car to actually drive somewhere fun.
Meanwhile, don't stop helping us with your love and encouragement. We can always do with the cheer team.  And there's a lot of big things I don't have. I'm grateful for the big things. And really, I am grateful for the small things too.

And speaking of the big and small....We  are being sneaky! We went home last night! Kim is an amazing friend, and her home is so very peaceful. She and I would sit in her back yard and even in the extreme heat, it was just so comfortable. And the plants in her yard were so soothing to me. Such a great soft landing.

But, there's no place like home. I could unpack our bags, and stop hauling the beanie and leather gloves that somehow made it to the hospital in the middle of summer. I could sort through the piles of things I had for all the different living situations. I didn't need plastic storage containers or paper plates at Kim's, but I didn't want to leave piles of things in the car. Now it's all sorted and at home!

Home. Our neighbor/most amazing friend found someone who opened their garage full of items we would need, including a ramp for our entry. We hope this time on wheels is short, but it is our current reality. She wheeled around the house in our big wheel chair and did an incredible job making sure the re-entry would be smooth. It was. Dom fell almost right into bed. And I ran down to the garden and picked some ripe tomatoes!

The cats curled right up against Dom's legs and the weather was perfect. Dom said to me on the way in this morning that home feels really healing. It is. That was my plan all along.

There was a package containing many different chocolates shipped from a dear friend waiting there for me. The chocolates included words of encouragement and love, and offers of support that I know are truly meant.
My Grandma would always say I can do all things through Him who strengthens me. (She was a powerhouse, that woman. She did do amazing things.) Sometimes, I think I can do all things through chocolate.
But the reality is, I am held up by so many. So much encouragement, support, prayers, visioning, love, practical gifts and service. I can do all things. I cannot do them alone.

Sometimes, I may want someone to get out of my way, but really, we are ever so grateful for all of those who have stood with us on this way.

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.

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 of nurses. 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.

 Cassandra in front of the burning city of Troy at the peak of her insanity.

By Evelyn De Morgan - Flickr, Public Domain, https://commons.wikimedia.org/w/index.php?curid=65892

4

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.