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.

Grief Beauty Strength

Thoughts are like waves. See them, acknowledge them, then let them pass. (paraphrase) ~Ruth Riffe

I haven’t posted anything in a long time. I have so much I’d like to say, but not sure how to construct it, well, constructively. These words ache to come out.

The past several weeks have been rough; add the tragedy in Connecticut, and I’m a regular waterworks. I’ve been bouncing back and forth between raw grief and ordinary life and it sometimes feels weird. I even struggle now and then with guilt. How can I go on living and laughing and eating cookies when families are ripped apart, never to be the same?

Yesterday, I attended a fundraiser for a dear teacher Ruth at my yoga studio. Ruth called in sick just over a month ago and a week or so later was handed the diagnosis of cancer. All over. She could try treatments, that would maybe extend her life, maybe. And, she’d be miserably ill. She opted to let it take its course. You see, Ruth watched her own husband fight the same cancer just 2 years ago and she knew what lay ahead. Our vibrant Ruth, who sometimes had so much energy I thought it was going to vibrate right out of her and the very walls would start dancing.

We gathered together for her yesterday. We dedicated our class to her. Normally, a teacher leads us with their words, but yesterday, only the names of the postures were called, and we moved into them silently. It was such a beautiful dance. We were all moving for Ruth. I think we were moving for something even larger.
I marveled as tears flowed down my face that I could be so heartbroken as memories of Ruth splashed across my mind, as well as images of the sweet babes in Connecticut, that I could still move and my body could still bend backwards and forwards and dare I say do amazing things. I marveled at everyone’s strength and beauty. I know I wasn’t the only one in the room with a tight heart, not for the aerobic activity, but the sadness welling up and out. And yet, we all followed along, wordlessly and with purpose. It’s one of the most beautiful experiences I’ve had.

It strikes me now that that is how we move on. (Or at least one of the ways). In strength and beauty, we go about our business, and we cry when we need to. It’s very simple, and yet I at least struggle with it.
Ruth will always be with me. The things she taught me both actively and passively will always be with me. The crying and grief will slowly fade out. Hearing Ruth’s voice during class will fade as well, I am sure. But the way she has touched me, just as I’ve been touched by others who have gone before Ruth, they will always be a part of my being, whether I consciously know it or not.
We take time to remember, we take time to honor and then we move out into the world with grace and strength and do each thing to the best of our ability and in love.

Guilty Confession Part Two, or Another Crunchy Gravel Show

I believe in my last post, I made a confession of enjoying a Masterpiece Theater program  soap opera. (They changed their name to Masterpiece Classic, but whatever...it's my blog.) This week's confession is going to get a little thicker. I check the Masterpiece website, and, oh my gosh, I'm sharing this in a teeny tiny whisper; I vote for characters I love and loathe. What's more, I check the chart to see how other people are voting. I am sucked into Downton Abbey.

Tonight, I changed my mind about a few characters. Some went down in my estimation while others went up. I'm watching lives unfold, and seeing some characters make bad choices, or be misunderstood, or maligned even, and how it all shakes out. I find it interesting how each week, the chart shifts with the storyline. And, when I see a particularly loathsome character display a change in character, I wonder, can a leopard change its spots? Or, more importantly, the character who has been misunderstood has new light shed upon him or her which paints a much different picture. Or, the character who has been strong and honorable suddenly falls off his proverbial white stallion.

And a thought occurred to me. Maybe it's not  earth shaking to you, but for me, very. If we could view people in the fulness of time, what would we see? Would we have more grace with someone if we knew that one day, they would display better behavior? Would we be more accepting of people if we knew that we didn't know the whole story?

I'm sure some of my friends already live this way. I'm sure most people are not half as judgmental as me. And I don't believe in throwing judgment out entirely. I'm kind of a realist. You know, as George Bush said, "There's an old saying in Tennessee — I know it's in Texas, probably in Tennessee — that says, fool me once, shame on — shame on you. (awkward pause.) Fool me — you can't get fooled again." —Nashville, Tenn., Sept. 17, 2002.  Well, actually, it's "fool me twice, shame on me." I fully believe in the balance between self preservation which comes from discernment which has a flavor of judgment. But, I also wonder what it would look like if I treated people like the characters on Downton Abbey. Maybe today someone appears super dastardly, and so it is. But what if I leave room for interpretation and depth of character? 
It is a balance between discernment and grace. I love being able to see the characters develop in the series, and being privy to information before them, and seeing how they'll receive the information. One writer says "they are always looking to do the right thing." http://www.bbc.co.uk/news/magazine-16731254 I don't agree with that entirely, but where it is true, it is interesting. It has helped me gain perspective I wouldn't necessarily have.

It is ironic, the two favorite characters on the series are completely opposite. One is loved for her outspokenness and wit, while the other is loved for her discretion and kindness. Guess who I am like and who I wish to be like.....
Humans are complicated. Some more than others. I'm sure over time, we all rise and fall in people's estimation. But, at the end of the day, the ensemble of us living and being together is a Masterpiece as well, and we're all capable of doing the right thing, whatever that may be.


*Crunchy Gravel credit to Lisa De Moreas, Washington Post

A Rant, if you will

I usually like to keep this blog light hearted, free from judgement and full of, well, grace.
This morning, I read something that I am struggling with.
Just a couple days ago, the retailer Target released a designer line that had so much on line traffic it temporarily crashed their system. Sounds like good news, right? Our economy needs recharging.
The designer clothes are lesser quality, so can be offered at lower prices. Great. People snatched up quantities at a time, and are now selling them on sites like eBay, for 3-4 times the original price.
It's appalling to me that we are such a greedy status conscious society that we want what we want regardless. The clothes are priced so low in the first place because often, they are manufactured with slave labor.
Why don't we cut out the middle man, and the slave labor, and take our money to local crafters. Instead of owning what everyone else owns, why not buy something straight from the crafter? I was just in a yarn shop yesterday and saw the most exquisite sweaters. Sure, they don't have status conscious labels, but they were beautiful, and likely made with love and not hate.
I know, there's all kinds of arguments for capitalism and blah blah blah. I'd just like to see people care more about their fellow man than a silly fashion statement that lasts for ten minutes. I should add here, I'm as guilty as the next guy...but I am trying.
I've never asked before, but I would really like your comments.