I find myself sharing less and less. The newness of the hospital has worn off. The ups and downs of news has made me shy to share an update. It seems as if we've fallen into a foxhole. We eat our rations, and are on alert for news this battle is over, and weary of taking hits. So we sit. Quietly.
I woke with a big 'ol lump in my throat. Yesterday was hard, on so many levels.
Dominic is full of questions regarding the transplant. Sometimes the answers are useful, sometimes they are less than useful. He asked our irregular doctor about 9 out of 10 match bone marrow transplants. (Which is the best Dom is looking at currently.) The doctor said he has only ever performed 2 transplants which were 9/10 match. One lived. One died. Squeezed Dom's ankles for Edema and was out the door.
What we later found out is that the patient who died had died of congestive heart failure pretty unrelated to treatment....but we got to stew on the 50/50 chances for a while. We were both amused and horrified by this doctor's candor.
Last night, an older patient, across the hall from us, who'd been screaming in anger all day was being taken on a walk. Whatever he's going through has hit him so badly, he needs a walker and he is not in his right mind. I was wondering if they had him out walking past 10:30 pm to avoid running into people. Also, I think his nurse must be a saint. He saw me turn the corner in the hall, and all of a sudden starts aiming straight for me. Which is on some level humorous, because the wheels of the racks holding fluids sound like baby walkers. All day, people up and down the hall way, and I keep expecting a baby to come wheeling through our door. I didn't know how to respond to this man heading straight for me somewhat like a wobbly toddler. He'd been screaming accusations and obscenities all day. His face was also an odd mixture of triumphant toddler and lost old man and innocence. He walked right up to me, full of wonder, and asked if he knew me. A tear streaming down his face. I will probably never forget him. I wanted to walk with him and make him feel better, but protocol, and my lack of miraculous powers dictated I say sorry we did not know each other.
I returned to our dark room and let it all out.
But I realized something as I lay here early this morning, feeling the coils of this thin mattress poking me from below, and still grateful I'm on a mattress and not sliding off the couch.
I realized my grief is not the end, it's just the now.
Early on, we cried over the unknown. Then we cried over the losses we were facing. Loss of jobs, loss of freedoms, loss of false security in our health. Then I began to get this ominous feeling when I'd cry. I'd associate my crying with something very bad about to happen. I'd twist my crying over what is a very difficult situation into the worst possible scenario.
Because something very bad is already happening. I don't need to borrow any trouble. I can cry because this is the bad thing. I don't need to imagine anything worse, because this all by itself is difficult. There's a sort of relief in identifying this.
I know this seems so elementary. Like duh, of course you can cry over this. But it's funny how we can allow our minds to start making associations. It's funny how the unknown can produce all manner of drama. It's funny how I can't just have a good cry because someone was rude to me without worrying that my crying is an indication the worst is about to happen.
I've always been someone who cries. Ugly cries. Why wouldn't I cry in this situation? Why wouldn't I be thin-skinned and emotional?
No one ever promised life would be easy. In fact we're pretty much promised it won't be.
As I just discussed with Dom, we're re-framing. This is what's required of us. We're not trading anything. We're not bargaining. We're not singled out to be victims. This is what's required of us. And there can be tears along the way. It's okay to grieve the journey, and always understand the journey is not the destination. We will get there when we get there.
Friday, September 22, 2017
Sunday, September 10, 2017
The world will be saved by beauty
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| Tahoe bound 2016 |
One of the things that gets us through this difficult time is looking forward to the future. Paradoxically, while we live in the moment we know this moment will pass.
We both live in the moment and we look forward to a day in the future when this whole business of chemo and transplant is a memory.
I have noticed that while I very much would love to visit Europe, what stills my heart just now is nature right next door. I realized it even more as the fires up north threatened Multnomah Falls, and my heart was breaking.
A shirt tail relative of mine took her girls on a National Parks tour and as I sat bedside in the hospital, my heart wandered with them. The photos that would show up in my social media made me swoon. They brought me comfort in an uncomfortable time.
Tahoe is just about two more hours from our hospital. I often want to just keep driving until we get there. I have also been to Tahoe enough times that the drive to the hospital is often mingled with faint memories of happy anticipation. Once upon a time, being in car on that highway meant traveling to beautiful Tahoe.
Being in a car will mean that again one day soon.
What's really prominent in my thoughts is the of beauty of Yosemite. In my mind's eye, I can see fields of wildflowers below the seemingly unshakable face of El Capitan. It feels like a strong anchor in this rough sea of unknowing.
The world will be saved by beauty~ Dostoevsky. When he wrote these words, I think he meant an even less obvious beauty than that of nature. The beauty of strength. The beauty of love. The beauty of selfless love. These are attributes of beauty. While I cannot claim selfless love, by any means; I can say that by Dom and I both allowing ourselves to be refined by this challenge opens our eyes to beauty around us.
There is beauty in kindness. There is beauty in gestures of thoughtfulness. There is beauty in people coming together. The disasters in America are showing the beauty of neighbor helping neighbor. Our own
Who is up for camping in Yosemite fall of 2018?
Tuesday, September 05, 2017
This highway
Dear readers: Just a reminder, I've primarily been using this blog to share my journey walking with Dominic through his cancer treatment. I do share more details about his journey in our group on Facebook. This is my place to process and share. (It's also my place to break all the grammar rules. Because I can.)
I love driving metaphors. I don't know why I do, because I'm not a huge fan of driving. At all. And this period in my life has me driving like never before. Well, except that time I lived in Orange County and drove to LA for early morning casting calls. I disliked driving then too.
I have generally always been the one to drive long distances to visit family. With exceptions, but it burned me out. All that driving alone.
It's so much nicer driving with a partner. This journey that Dominic and I are on is serious business. We have found it is better to stay positive, hopeful and kind. I share mostly nice things here, because that is how we want to see things. On that note, I've even made friends with the refrigerator police. Yes her. She has a huge smile for me now when I approach her for something. Because kindness with people is everything.
But I joked with someone a while back when she remarked how kind I am, or some such. I mentioned my real character comes out in the car. The real me that's not all dolled up for the blog, or for the nursing staff, or for our support group; that me can be vicious. Do not cut in front of me as if I'm not also trying to get some where. Do not crawl up my tail or you will get the most vicious stare down. I will comment out loud and subject poor Dom to my every little thought about how horrible people are. I am not all love and light behind the wheel.
I do try to be a courteous driver. I let people in front of me with a smile. I stick to the slower lanes if I'm not racing at one hundred miles per hour. I keep a good distance between myself and the car in front of me. If traffic allows such.
If the gods are smiling on you, you will never have to be a passenger in my car though. You will probably be safe. But you will be subject to a litany of commentary.
I'm going to make a gigantic leap here. I read something this morning that resonated with all these thoughts I'd been having.
I think you'd have to have your head under a rock to not know that the world as we know it is pretty chaotic. It seems like a lot of people are in the midst of something huge. One of my favorite writers has a response for people who are tired of fighting. He, Jim Wright says he's tired of fighting gravity, but there really isn't an alternative if you want to stay upright. If you want a better nation, he says, you have to be better citizens.
I think that rings so true.
It's the little things that all add up. If we can't do the right thing in the smalls.....who is to do the right thing in the majors?
While one person has admired my kindness, another has categorized me as a goody goody, because I like to do the right thing. It's all perspective isn't it? Someone's a goody goody until that right thing directly benefits someone, and then they're all right. There's big challenges raging right now. Really big. Natural disasters, politics, and cancer to name a few. And while it's important to do the big things: to show up, to voice concern, to donate, to fight the fight and take the pills, it's also important to do the little things. The goody goody things. The Golden Rule things.
I like to remember I am not *in* traffic, I am *part of* the traffic. I am the good and the bad. I am the too fast and too slow. It reminds me of something I shared a while back. I was behind someone with all the bumper stickers. At a stop light, I was able to read a few. One said essentially, that if you can read this to back off, while another said something like if they're climbing up your a$$ to step on the gas....Essentially, this person wanted all the control. Don't drive too slow in front of this car, and don't drive too fast and tailgate behind this car. Now, aside of the ridiculousness of someone in front of the car not being able to read instructions on a bumper sticker in the rear of this car....this was a sad commentary. It kind of sums up one way of traveling. Go at exactly my speed, and everything will be okay.
The thing is, by design, we all go at different speeds.
I'm afraid to hit the publish button.... this feels so preachy. But, it's what's on my heart as I navigate through this journey. Dominic and I are trying to stay positive; but sometimes I feel like I'm faking it. They say your true character shows up under stress, and I worry that the real me is the one grumbling behind the wheel. As positive as I like to be, I also want to be transparent.
It's also on my heart that people are full of beauty. The same person that is taking up space on the freeway could also be the person who brings a meal, or says just the right thing at the right time. I don't think there is any act of kindness too small. Maybe we can't cure cancer today. Maybe we can't all come to the same decisions politically. Maybe there are so many things falling apart. But, in times of stress, we are coming together. I know we can spread kindness. I know we can spread love. I see it through this process. I have been so impressed by the many different people who hold us up and love us. Every small action really does add up. So, as much as I dislike driving, I'm so grateful it's just part of the journey. I'm so grateful for my driving partners. I'm so grateful for the traffic, that is really people doing life with us.
I love driving metaphors. I don't know why I do, because I'm not a huge fan of driving. At all. And this period in my life has me driving like never before. Well, except that time I lived in Orange County and drove to LA for early morning casting calls. I disliked driving then too.
I have generally always been the one to drive long distances to visit family. With exceptions, but it burned me out. All that driving alone.
It's so much nicer driving with a partner. This journey that Dominic and I are on is serious business. We have found it is better to stay positive, hopeful and kind. I share mostly nice things here, because that is how we want to see things. On that note, I've even made friends with the refrigerator police. Yes her. She has a huge smile for me now when I approach her for something. Because kindness with people is everything.
But I joked with someone a while back when she remarked how kind I am, or some such. I mentioned my real character comes out in the car. The real me that's not all dolled up for the blog, or for the nursing staff, or for our support group; that me can be vicious. Do not cut in front of me as if I'm not also trying to get some where. Do not crawl up my tail or you will get the most vicious stare down. I will comment out loud and subject poor Dom to my every little thought about how horrible people are. I am not all love and light behind the wheel.
I do try to be a courteous driver. I let people in front of me with a smile. I stick to the slower lanes if I'm not racing at one hundred miles per hour. I keep a good distance between myself and the car in front of me. If traffic allows such.
If the gods are smiling on you, you will never have to be a passenger in my car though. You will probably be safe. But you will be subject to a litany of commentary.
I'm going to make a gigantic leap here. I read something this morning that resonated with all these thoughts I'd been having.
I think you'd have to have your head under a rock to not know that the world as we know it is pretty chaotic. It seems like a lot of people are in the midst of something huge. One of my favorite writers has a response for people who are tired of fighting. He, Jim Wright says he's tired of fighting gravity, but there really isn't an alternative if you want to stay upright. If you want a better nation, he says, you have to be better citizens.
I think that rings so true.
It's the little things that all add up. If we can't do the right thing in the smalls.....who is to do the right thing in the majors?
While one person has admired my kindness, another has categorized me as a goody goody, because I like to do the right thing. It's all perspective isn't it? Someone's a goody goody until that right thing directly benefits someone, and then they're all right. There's big challenges raging right now. Really big. Natural disasters, politics, and cancer to name a few. And while it's important to do the big things: to show up, to voice concern, to donate, to fight the fight and take the pills, it's also important to do the little things. The goody goody things. The Golden Rule things.
I like to remember I am not *in* traffic, I am *part of* the traffic. I am the good and the bad. I am the too fast and too slow. It reminds me of something I shared a while back. I was behind someone with all the bumper stickers. At a stop light, I was able to read a few. One said essentially, that if you can read this to back off, while another said something like if they're climbing up your a$$ to step on the gas....Essentially, this person wanted all the control. Don't drive too slow in front of this car, and don't drive too fast and tailgate behind this car. Now, aside of the ridiculousness of someone in front of the car not being able to read instructions on a bumper sticker in the rear of this car....this was a sad commentary. It kind of sums up one way of traveling. Go at exactly my speed, and everything will be okay.
The thing is, by design, we all go at different speeds.
I'm afraid to hit the publish button.... this feels so preachy. But, it's what's on my heart as I navigate through this journey. Dominic and I are trying to stay positive; but sometimes I feel like I'm faking it. They say your true character shows up under stress, and I worry that the real me is the one grumbling behind the wheel. As positive as I like to be, I also want to be transparent.
It's also on my heart that people are full of beauty. The same person that is taking up space on the freeway could also be the person who brings a meal, or says just the right thing at the right time. I don't think there is any act of kindness too small. Maybe we can't cure cancer today. Maybe we can't all come to the same decisions politically. Maybe there are so many things falling apart. But, in times of stress, we are coming together. I know we can spread kindness. I know we can spread love. I see it through this process. I have been so impressed by the many different people who hold us up and love us. Every small action really does add up. So, as much as I dislike driving, I'm so grateful it's just part of the journey. I'm so grateful for my driving partners. I'm so grateful for the traffic, that is really people doing life with us.
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