Two years ago I went to sleep on the night of January 20th, totally exhausted, but happy that the next day was a Friday. Fridays meant that I didn't work so I just had to take care of Nathan and we didn't have any doctor appointments so it was only the ever-present cycle of medication monitoring, diabetes regulating, heating pad/pillow adjustment and whatever else Nathan needed or would let me do to try and make him more comfortable.
He hadn't been able to sleep lying down in months, so I went to bed alone, as usual. I hadn't slept next to him for about three and a half months except once at the hospital when they moved another bed next to his and let me sleep in it. That was one of the hardest things, because we were always touching while sleeping. Sometimes it was just an arm or a leg but we were normally completely tangled up with each other. Even now I ache for the comfort, reassurance, and safety that sleeping next to my husband gave me.
I went to bed around two, I think, after either taking off or putting on his compression socks- not sure which, now, either was nearly a form of torture for both of us. Nathan slept- what little the pain would let him sleep- in the living room in his recliner. At this point I was always so exhausted and he wasn't able to yell loudly enough to wake me up if he needed something so he would call my cell phone (which I kept by my pillow at full volume) to wake me up. When my phone rang I would roll out of bed not even completely conscious- just knowing he needed me. I controlled the pain meds at this point. Not because he might have gotten addicted-- he was hurting enough that wouldn't be possible, but because he wasn't lucid enough to remember things like how many he had taken and what time he last took them at. Even I had to write it down- there was so much to remember.
He usually needed me once or twice a night... if the pain was really bad a lot more often than that. At this point Nathan had the walker and we had a toilet riser and handles around the toilet, but he still needed my help. So there was usually a bathroom trip in the night. The bathroom was ten, maybe fifteen, feet from his chair. The trip there and back completely exhausted him and would usually take at least thirty minutes. It had taken up to an hour before. There are so many things about ambulation that we just take for granted. Nathan needed the walker even to get around our tiny apartment and he hated it so much. This was the guy who would play Ultimate Frisbee for hours without stopping. Who would chase squirrels and climb trees for no reason whatsoever.
Anyway, on this night I went to bed at 2AM, hoping that we might be able to get three or four hours in before the next pain med dosage. I was shocked when I woke up at 8AM and Nathan hadn't called me. I went into the living room and checked on him, but he was sleeping... well, it never looked comfortable, but peacefully. I was so excited. I thought maybe we were hitting an upswing. He'd done so well immediately after the bone marrow transplant. I just wanted him to get past all this terrible pain and start feeling better. I went straight back to bed, after I knew he was ok. In hindsight I know that he was sleeping so well because he could no longer feel the worst of the pain, but I didn't know that then and I was so tired and so happy.
He finally called me again at noon. Later, I would be so grateful for all the sleep I'd gotten that night, because when he called me and I stumbled into the living room he told me that he couldn't move or feel his legs. He had to explain it to me twice, because I couldn't understand it. I didn't understand how someone could become paralyzed from the waist down overnight. And then I freaked out. I totally and completely freaked, and he was there, making me come over to him so he could hug me. Telling me that it was going to be ok. Calming me down so I could call his bone marrow transplant physician at Barnes and then the ambulance to come get him, and his mom so she knew what was happening. He did that until the very end, always the one offering comfort rather than asking for it. Such an incredible man.
We spent the rest of that day in the Springfield ER, figuring out what to do and then they decided to transfer him to Barnes. Paula arrived and we ended up driving to St. Louis at around midnight, and spending most of the next day in their ER. Nathan had surgery Saturday night to try and drain the fluid around his spinal column that was pinching the nerve and not allowing him to move/feel his legs. He was sedated for the pain (and I think his O2 levels were low so they had intubated him as well?) at that point so Paula and I decided that he would want to go ahead with the surgery. It would only give him an 8% chance of being able to regain the use of his legs, and it was risky, but without the surgery he had a zero percent chance. After the surgery he would have had to wear a back brace for two months or so, I think, but we agreed that if there was any chance then Nathan would take it. He had to be able to run again, someday. He had to.
I didn't sleep until Sunday morning I think. He made it through the surgery well, but we wouldn't know if it had done anything until he woke up and probably not even then, what with the swelling brought on by the surgery. They brought him out of sedation sometime on Sunday, and his legs were the same, but we knew there might not be immediate results. Paula and I set up a rotating shift at the hospital. I had nights and I'd come in whenever I woke up for the days, but that way Nathan was only alone during the ICU mandated "no visitor" hours and we could speak to the doctors whenever they came in. Nathan was still highly drugged for all of this, which offered much laughter, even if it was slightly desperate laughter. At one point a male nurse was in the room, talking to Nathan about his pain and Nathan said, "Hey, When do I get my slippers?" The nurse asked him what he meant and Nathan said, "They said I would get some slippers. I want my free slippers, dammit."
The guy asked Nathan where he was and Nathan said he didn't know and the nurse said, "Well, Nathan you are at Barnes-Jewish. They don't give anything away for free here."
Nathan sort of drunkenly murmured, "Yeah, that's the truth." I just laughed.
He developed pneumonia at some point- one that antibiotics and anti-virals did nothing to fight, and the pnuemonia is what actually killed him, on the morning of Jan 29th. I'm not going to blog about the very last days. If you want to know about them, you can read this post. I just haven't really talked about this part before, and I guess I sorta wanted to explain why I might not seem much like myself this week, or why I might make decisions that run counter to my "norm."
I guess I really just wanted to feel like I wasn't the only person who had this information. Like someone else understands, even if just by proxy, a bit of what it was like-- two years ago, today.
Showing posts with label serious. Show all posts
Showing posts with label serious. Show all posts
Monday, January 21, 2013
Sunday, May 15, 2011
Contemplation
Want to know something odd? I found the following in an old notebook. I think I wrote it my first year of teaching, though I don't completely remember:
"Restless, and restless of being restless
Everything changing, wishing it all made sense.
Purposeless and trying to convince oneself that's ok.
'Does everyone feel so alone?' she wondered, sitting on a plaid couch. Is it a condition that we all feel and try to pretend we don't? Does the man rooting through the dumpster and throwing soda cans into a stolen grocery cart feel it, or is loneliness a privilege of the rich? If Maslow's needs are fulfilled can we then know loneliness, or is it something more basic than even the need for food, water, air. Is it encoded into our DNA, caused by a chemical, or is it simply because we all know somewhere deep inside, that each of our cells is alone. Yes, it makes up a body, but it is still just one cell surrounded by a shield that won't let anything get too close, lest an explosion happen.
The amazing gift of the human being is to be alone when surrounded by others. And I think perhaps the gift of Americans in particular to refuse connection to another. I was walking into a gas station the other day and an elderly woman was walking out. She said, "Can you put this in my front seat?" I was shocked, taken aback, and genuinely confused. I looked around for help and started to go into the gas station when another girl asked her, "What now?" The lady repeated her plea and held the bag on her arm out. The younger girl took it and escorted her to her car. I quickly went to the restroom and avoided the younger woman in shame. What harm could an old lady who can't lift her groceries do to me?"
Odd, that I wrote something so apt for my feelings today, almost 5 years ago. So much for that whole, "look how much different I am today" feeling that I like to espouse. I, apparently, am much the same- though I'd like to think I would stop to help the lady with her groceries, I can also see myself doing the same thing, all over again. I don't do well with surprises that require action.
During the graduation ceremonies I was thinking a lot about my acting classes in college and the things I was taught about posture-- Hold that chin up, drop those shoulders. Show the world that you are brave and strong and noble, even though inside you feel scared and weak and base. Because somehow, if you can show it to the world, it's just a little bit more true and your feelings don't actually matter after all.
This is as contemplative as I ever get, and I've yet to draw a single conclusion. Interestingly enough, I recognize this as the writing mood I was in which resulted in me being accused of plagiarism on two separate occasions in high school. (I have never knowingly plagiarized, and I'm honest enough on here, I'd tell you if I had.) I think, perhaps, it's because when I am contemplative I lose my writing "voice"... It's as though I'm writing while mentally underwater. Ahhh there's a conclusion. At last I can sleep soundly.
"Restless, and restless of being restless
Everything changing, wishing it all made sense.
Purposeless and trying to convince oneself that's ok.
'Does everyone feel so alone?' she wondered, sitting on a plaid couch. Is it a condition that we all feel and try to pretend we don't? Does the man rooting through the dumpster and throwing soda cans into a stolen grocery cart feel it, or is loneliness a privilege of the rich? If Maslow's needs are fulfilled can we then know loneliness, or is it something more basic than even the need for food, water, air. Is it encoded into our DNA, caused by a chemical, or is it simply because we all know somewhere deep inside, that each of our cells is alone. Yes, it makes up a body, but it is still just one cell surrounded by a shield that won't let anything get too close, lest an explosion happen.
The amazing gift of the human being is to be alone when surrounded by others. And I think perhaps the gift of Americans in particular to refuse connection to another. I was walking into a gas station the other day and an elderly woman was walking out. She said, "Can you put this in my front seat?" I was shocked, taken aback, and genuinely confused. I looked around for help and started to go into the gas station when another girl asked her, "What now?" The lady repeated her plea and held the bag on her arm out. The younger girl took it and escorted her to her car. I quickly went to the restroom and avoided the younger woman in shame. What harm could an old lady who can't lift her groceries do to me?"
Odd, that I wrote something so apt for my feelings today, almost 5 years ago. So much for that whole, "look how much different I am today" feeling that I like to espouse. I, apparently, am much the same- though I'd like to think I would stop to help the lady with her groceries, I can also see myself doing the same thing, all over again. I don't do well with surprises that require action.
During the graduation ceremonies I was thinking a lot about my acting classes in college and the things I was taught about posture-- Hold that chin up, drop those shoulders. Show the world that you are brave and strong and noble, even though inside you feel scared and weak and base. Because somehow, if you can show it to the world, it's just a little bit more true and your feelings don't actually matter after all.
This is as contemplative as I ever get, and I've yet to draw a single conclusion. Interestingly enough, I recognize this as the writing mood I was in which resulted in me being accused of plagiarism on two separate occasions in high school. (I have never knowingly plagiarized, and I'm honest enough on here, I'd tell you if I had.) I think, perhaps, it's because when I am contemplative I lose my writing "voice"... It's as though I'm writing while mentally underwater. Ahhh there's a conclusion. At last I can sleep soundly.
Tuesday, September 28, 2010
One Year
Today marks the first year of Nathan's fight against cancer, and today we got a call that not only is he 100% leukemia free, but he is also 100% donor cells and thus far there is no sign of mutation in the chromosomes that can cause leukemia. Now obviously things can change and "cure" isn't until 5 years after bone marrow transplant, but right now we are sitting in pretty much the best place that you can in regards to the cancer. We are still dealing with small symptoms of graft versus host, low platelets, and of course steroid side effects, but all of that pales in comparison with the fact that one year ago today I was facing my biggest fear and today Nathan is walking and climbing stairs and talking about work and school instead laying in a hospital bed talking about blood counts, chemotherapy, and anti-nausea medicine.
I can't even describe what this year has been like. I tried earlier today and all I could come up with was "unh." I'm not much of a introspect-er... but I can tell you what has gotten me through all of this. 1) Trusting that God can make it right, somehow. 2) Only dealing with the moment as it comes- theatre training, that one's for you! 3) An incredible husband who would still smile and tell me he loved me when going through the worst stuff the medical field can throw at ya. 4) A fantastic network of family and friends with large amounts of grace, love, and patience.
All last year I would say, "But a year from now, things will be better." "In a year from now, we won't have to deal with this." "It's ok, babe, this is just our lost year. Next year we will pick back up where we left off." And it's so wonderful to hit the year mark and be, for most intents and purposes, correct. We are still dealing with some stuff that we didn't have in the beginning, so I think in a year from now we will be mostly- if not totally- past that, too. And someday this is all going to be a surreal memory that we can't believe happened to us. But right now, we are picking up where we left off.... physically weaker- for the moment, but stronger in all the places where it matters. Faith, hope, and love.
I don't like dwelling because it just makes me sad and I attempt to write a blog that is enjoyable. (No, I don't believe that reading sad things is enjoyable.. and I hate dystopias. *gasp* I know. I don't like peanut butter and chocolate, either. I'm a veritable heathen. Ya know, it's ok though. Some people are squirrel handed and no two people are not on fire....Here's the link if I just made you blink a few times and re-read that last sentence.) Anyway, what I'm trying to say is I don't want to focus on everything that made this the hardest year of my life. What I want to focus on is family, friends, weddings, Halloween costumes (I told you I love them that much), rainbows, baby shoes, romantic comedies, books, games, amusement parks, and waking up next to an amazing man whom I love with all my heart. Even if I had to repeat the whole year, another 70 times over, that last one would be worth it.
I can't even describe what this year has been like. I tried earlier today and all I could come up with was "unh." I'm not much of a introspect-er... but I can tell you what has gotten me through all of this. 1) Trusting that God can make it right, somehow. 2) Only dealing with the moment as it comes- theatre training, that one's for you! 3) An incredible husband who would still smile and tell me he loved me when going through the worst stuff the medical field can throw at ya. 4) A fantastic network of family and friends with large amounts of grace, love, and patience.
All last year I would say, "But a year from now, things will be better." "In a year from now, we won't have to deal with this." "It's ok, babe, this is just our lost year. Next year we will pick back up where we left off." And it's so wonderful to hit the year mark and be, for most intents and purposes, correct. We are still dealing with some stuff that we didn't have in the beginning, so I think in a year from now we will be mostly- if not totally- past that, too. And someday this is all going to be a surreal memory that we can't believe happened to us. But right now, we are picking up where we left off.... physically weaker- for the moment, but stronger in all the places where it matters. Faith, hope, and love.
I don't like dwelling because it just makes me sad and I attempt to write a blog that is enjoyable. (No, I don't believe that reading sad things is enjoyable.. and I hate dystopias. *gasp* I know. I don't like peanut butter and chocolate, either. I'm a veritable heathen. Ya know, it's ok though. Some people are squirrel handed and no two people are not on fire....Here's the link if I just made you blink a few times and re-read that last sentence.) Anyway, what I'm trying to say is I don't want to focus on everything that made this the hardest year of my life. What I want to focus on is family, friends, weddings, Halloween costumes (I told you I love them that much), rainbows, baby shoes, romantic comedies, books, games, amusement parks, and waking up next to an amazing man whom I love with all my heart. Even if I had to repeat the whole year, another 70 times over, that last one would be worth it.
Saturday, September 11, 2010
Being Sad.
Taking a bit of a break from my normal mental randomness to address a topic slightly more serious.... I'll return to "normal" blogging pretty soon.
I got some really bad news yesterday. It has nothing to do with Nathan/cancer, and while I'm very close and affected by it, it's not my story to share the details of, so I will just leave it at that. I had a long time of prayer last night, just me and God and I'm feeling better about it, today, but I'm still heart sore. There are some things that are so hard to deal with, because there is no socially acceptable way to talk about them. I'm sure people felt this way about Nathan when he got cancer. People want to talk about it, but they also want to be sensitive to our feelings. You want to be there but you don't want us to think you are ignoring the situation, but you don't want to talk about it if we don't want to and so none of the conversation is about what is most important and all of the silences are awkward. And you just wish there was someway you could help bear the weight, but you don't know how.
Most of my life I have been a dreader. If I knew that something was going to happen that would change the status quo for the worse I would dread it. I distinctly remember getting really upset in college because I had had a great year and I knew next year things were going to change. I knew that I wasn't going to be as good of friends with some people and that our lives were going to lead us in different directions... and I knew that when that actually happened I would be ok, but in the moment I was really sad about how I wouldn't really care in the future.*Notably, that next year is the year I would meet my future husband.
Now when something bad happens it makes me start thinking about everything else bad that could happen.... and there is a lot, since I no longer believe that I (and my loved ones) are invincible. I started to let some of that go last night, I think. Because if the worst does happen... do I want to have spent the time that I do have mixed up with dread? There are enough horrible emotions when you are going through the awful. Why would you want to pull those emotions out beforehand and taint the good times? The Wed. before Nathan went into the hospital he was waiting for me when I got off work with a pumpkin spice latte from Starbucks, and then we went out to dinner and to a movie and had a wonderful time. That night he developed a rash and by Saturday morning he was being admitted to the hospital. But all the time he was in the hospital we kept looking back on that night as a really wonderful night together and we were so happy that we had done it. If we had known what was in store, we couldn't have had that night. We would never have been able to enjoy it.
Sometimes ignorance really is bliss. Doesn't mean the hurt doesn't hurt when it comes... just means there is nothing you can do to prepare for the pain, so you should enjoy your life while you can.
I got some really bad news yesterday. It has nothing to do with Nathan/cancer, and while I'm very close and affected by it, it's not my story to share the details of, so I will just leave it at that. I had a long time of prayer last night, just me and God and I'm feeling better about it, today, but I'm still heart sore. There are some things that are so hard to deal with, because there is no socially acceptable way to talk about them. I'm sure people felt this way about Nathan when he got cancer. People want to talk about it, but they also want to be sensitive to our feelings. You want to be there but you don't want us to think you are ignoring the situation, but you don't want to talk about it if we don't want to and so none of the conversation is about what is most important and all of the silences are awkward. And you just wish there was someway you could help bear the weight, but you don't know how.
Most of my life I have been a dreader. If I knew that something was going to happen that would change the status quo for the worse I would dread it. I distinctly remember getting really upset in college because I had had a great year and I knew next year things were going to change. I knew that I wasn't going to be as good of friends with some people and that our lives were going to lead us in different directions... and I knew that when that actually happened I would be ok, but in the moment I was really sad about how I wouldn't really care in the future.*Notably, that next year is the year I would meet my future husband.
Now when something bad happens it makes me start thinking about everything else bad that could happen.... and there is a lot, since I no longer believe that I (and my loved ones) are invincible. I started to let some of that go last night, I think. Because if the worst does happen... do I want to have spent the time that I do have mixed up with dread? There are enough horrible emotions when you are going through the awful. Why would you want to pull those emotions out beforehand and taint the good times? The Wed. before Nathan went into the hospital he was waiting for me when I got off work with a pumpkin spice latte from Starbucks, and then we went out to dinner and to a movie and had a wonderful time. That night he developed a rash and by Saturday morning he was being admitted to the hospital. But all the time he was in the hospital we kept looking back on that night as a really wonderful night together and we were so happy that we had done it. If we had known what was in store, we couldn't have had that night. We would never have been able to enjoy it.
Sometimes ignorance really is bliss. Doesn't mean the hurt doesn't hurt when it comes... just means there is nothing you can do to prepare for the pain, so you should enjoy your life while you can.
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