I am glad I used yesterday to write an insightful post, because my brain feels like nothing but mush amongst the fog tonight. My blood counts are really low. It's not unexpected, but I was hoping a day or two of bottoming out and I'd be making my way to the top again. Today they almost gave me a transfusion of red blood cells because of how low my counts are, but they opted to let me wait a day or two more (if I can handle it) due to all the little side effects that can come with transfusions. I was happy to wait when they proffered me a few days, but as the hours have gone on I have started to regret my decision. I am shakey. Tired. Unsteady. Foggy. I may be turning into a vampire, because I definitely need some blood. If my counts have started up a little tomorrow, I will forgo the transfusion, otherwise, I don't think I'll be standing without one.
Today was mostly uneventful. Rora and Jen spent most of the day here just shooting the breeze. I only got to see Colten for what felt like a few minutes, as he has been running himself pretty ragged driving back and forth and getting everything done. And I saw hardly a nurse or aide at all. I am not one to talk against my hospital staff, but yesterday and today have been pretty devoid of great personal care. I think the hospital is understaffed, but patients shouldn't suffer for it. Yesterday I didn't care too much, I was up and feeling ok and free to schedule my walks and such around when the nurses could get to me, but today was different. I needed to walk when I felt capable. And I wasn't supposed to have to be hooked up to a stupid pole all day, but the nurses couldn't seem to get around to me to unhook medicines before new ones needed to go up (four hours later). I'm feeling frustrated, which is unpleasant when my head wants to float.
I was willing to let it slide (and not have it enter this blog) yet another day, but I got the Rectal Squad back tonight, and I lost it. So their names will forever go down in the blog as the night team that I detest. Such terrible punishment, I know, but it's all I have. Darren is the actual nurse, and he is training Julie. They both suck. Darren smells terrible, which seems like a mean thing to say, but I'm having a freaking bone marrow transplant and I still have personal hygiene. The least he could do is put in a tic tac and wipe on a little deodorant. That was my first impression of him, as I had him alone the first time I met him. He was smelly, but mostly unobtrusive (which is appreciated at night), so whatever. Then Julie joined the team. She is loud. And pushy. NOT appreciated at night. And they flip on the lights, and talk in normal voices to one another at 2:00, 4:30, and 6:00 in the morning when they invade my room. As an added bonus, with Julie in tow, Darren has suddenly became obsessed with bowel movements.
Let's talk bowel movements. Uncomfortable? Very. Welcome to transplant life. Everything that goes in or out of your body is carefully noted and put in the chart, after being analyzed by the aides. I am not ok with this. I wasn't during my first transplant, any stay I have ever had at a hospital, when visiting another person's house, public restrooms, or anywhere other than my personal toilet at home. Glad we got that cleared up. Darren, on the other hand, is somewhat obsessed. No other nurse annoys me about bowel movements but him. You see, I don't turn them in. Yep. I'm that patient. I flush the toilet. So tonight he started again on his favorite topic. But he has apparently reached his last straw with me, because I got threatened with a rectal swab in absence of a stool sample. Foggy or no, I don't take threats well. I told him simply, "I won't agree to that procedure, so you can threaten all you want, but it won't be happening." Are YOU going to hold me down for that, little man? Because it does not matter how low my counts are, I will lay you out if it comes down to you and my butt.
At this point he backtracked quickly, stuttered, made sure I knew he wasn't "threatening me," just telling me what the doctors will say, and letting me know that the nurses have the "squeeze" put on them and they have to let the patients know. Then he finally unhooked my I.V. so I could go take a walk, and stepped back with a little look of horror on his face when I stood up. This was the best part of my day. The. Best. Part. He's an average guy, but I am a tall woman, and I have two inches on him easily. He always takes care of me at night and so has never seen me do anything but lie in a bed. He stared at me and said, "Wow. You're really tall," in a small voice. "Yep. Strong, too," I responded, gowned-up, and went on my walk, fuming. I have no idea why my height intimidated him so much, but I hope he keeps it in mind next time he thinks about that swab. So the Rectal Squad is born. And I wish I would never see either one of them after tonight, but I have a lot of nights left to go. I just hope they keep it down tonight so I can sleep, for their own sakes. I am exhausted and have no patience left for stupid people (and I'm tall, so beware).
As a brighter ending, Jen took Rora for ice cream while Colten and I talked for a bit today and the conversation turned towards serious topics that led me to some tears. I am so emotional with my body wreaking havoc on itself, so it's not hard for me to produce water works these days (or ever, really). Anyhow, Colten was a bit misty as well, and Jen and Rora walked in right in the middle of our talk. We both smiled and Colten joked and motioned with a chip, "Sorry, these nachos are just really spicy." Rora, my sweet, bright girl responded, "You should have got the ones that Jen got, Daddy!" It was so funny, and so precious. Exactly what I needed today. I also read a post on Facebook about people who are angry at dog owners for not picking up their pets' poop. One man posted a sign that said, "To whoever let's their dog poop on my lawn every day, I will find you, and I will poop on your front porch every morning for the rest of the time you live here!" Which is a huge overreaction, but I could not stop laughing when I read it. I guess the themes today were poop and laughter. There you go. Good night. :-)
Tuesday, June 9, 2015
Monday, June 8, 2015
Day +5
It was hard for me to blog tonight. I have had a lot of "feels" all day, which generally lead me to write, but my thoughts have been quite erratic, and this post likely will have to be, too. Life is fragile. This is a common saying used carelessly, I think, but these are words that take on new meaning for terminal patients. True, any person facing a major illness, whether terminal or not, might have a better appreciation for life, but I feel justified in saying that it does not compare to being told your days are numbered. I know from personal experience.
Patients who are diagnosed terminal "live every moment to the fullest." They go sky diving, quit their jobs, spend all their money, tour the world, blah, blah, blah. At least, that's what all the movies, books, and songs say. I didn't feel like sky diving when I was told there was nothing further doctors could do for me. Granted, I was still given a few years, and I can't speak to what it feels like to be given months, weeks, or days. But it was only a few years, and I was only 17. I felt terrified. And life became very precious to me in a way it never had been before. I don't want to die. In fact, I am scared to death to die. I know, good Christians are not supposed to say such things. After all, we are going to be with God afterward, and nothing is better. But I love my family. And I love my life. And though we are not supposed to be of this world, I am. Oh, I don't care so much about possessions, but I do love this world, and especially the people in it. And God and I talk about it a lot, so He's definitely aware of my heretical feelings. I think He understands. His creations are pretty amazing.
I think everyone is a little scared to die. It might be the actual dying, leaving people behind, not knowing exactly what the afterlife will be like, something else, or all three (it's a bit of all three for me, but mostly leaving people behind). Regardless of your personal thoughts, the difference between normal people walking around and those who are handed a ticking clock is that the ones handed the ticking clock are aware that we all have a ticking clock. In normal, every day life, death is easy to put off until old age. For me, it became something that waited around every corner. I wondered what idiot would go sky diving and risk dying sooner. A man sentenced to be executed doesn't typically ask to speed up the date.
I am often told that I am brave. I appreciate the sentiment, and try to live up to it, but I really just do what I have to do. "Afraid" is a better descriptive term for me. All the time, actually. Where others see a beautiful hike along a mountain edge, I see a place that I could accidentally fall to my death. Where some see a passing storm with excess lightning and wind, I see a force that could fling my little home away. Where most would use a little extra caution to traverse winter roads, I would prefer not to go anywhere because I am convinced my family could get in a crash. I think these things (and more, but I won't bore you further with my daily crazies) all the time, but I can't let them control my life. "Ships in harbor are safe, but that is not what ships are built for."
It took me a lot of years, a lot of struggles with my faith, and a lot of anger to realize that God controls my life, and my death. He built me for more than sitting in a harbor. And He will decide when I leave this place, though I will fight like hell going all the way out (He knows that too, we're working on my control issues). But I can take solace in it. I can live my life knowing that it will happen when He chooses, and not before. I still really can't handle the high hiking thing, last time I cried like a baby, I hate heights and edges, but that's another matter. The point is, I know how fragile life is. I worry about it being taken away all the time. And if that sounds like a neurotic way to live, it is. But I also have a very precious view of just how much each moment means, and how involved God is in every second of our days.
So why the morose topic for the night? No, I don't think I'm dying. I haven't considered myself "terminal" for some time. A woman in my parent's church passed away last night, quite suddenly. I didn't know her personally; she prayed for me and spoke to me through Facebook. The loss of her life has already rippled through the social networking community and I have read the pain and disbelief of her passing all day, as well as the sharing of memories. She left behind a daughter around my age who she was incredibly close to. My heart aches for her. I feel so strongly today how fragile life is. Her name was Anita. And her friends and family adored her. I wish that I had known her.
Even for me, with my history and sitting in a hospital room surrounded by people constantly working to prevent me from dying, it is easy to forget that a casual goodbye to a loved one could be my last. It is easy to take daily relationships, even distant ones, for granted. And you know, that's ok. Because that's how we get through each day--by believing there will be another one tomorrow. But it is good to be reminded sometimes, to cherish the seconds, and make memories that will stay with our loved ones even if we can't. It helps put into perspective what matters and what does not. I still hate being here. I hate cancer. I want out of this room and I want to get on with my life. But those things don't really matter. What matters is that I get to be here. My loved ones are all (more or less) nestled in their beds. And I will be here tomorrow morning to keep loving them, and to make more memories.
The fevers seem to have fully passed, but rebuilding blood counts from nothing is not a painless experience. The "storm" will go on for some time. So, after writing this very sporadic and unrefined blog that encompasses so many of my emotions and thoughts over the past years as well as today, it seems fitting to end with a quote I used to have hanging in my room when I was just a teen. "Rise above the storm, and you will find the sunshine." And hug someone you love with a little extra care tonight. Maybe step outside and breathe in some fresh summer air. Listen to birds sing. Heck, go ahead and belt out your own favorite song. Just enjoy it. Every minute.
Patients who are diagnosed terminal "live every moment to the fullest." They go sky diving, quit their jobs, spend all their money, tour the world, blah, blah, blah. At least, that's what all the movies, books, and songs say. I didn't feel like sky diving when I was told there was nothing further doctors could do for me. Granted, I was still given a few years, and I can't speak to what it feels like to be given months, weeks, or days. But it was only a few years, and I was only 17. I felt terrified. And life became very precious to me in a way it never had been before. I don't want to die. In fact, I am scared to death to die. I know, good Christians are not supposed to say such things. After all, we are going to be with God afterward, and nothing is better. But I love my family. And I love my life. And though we are not supposed to be of this world, I am. Oh, I don't care so much about possessions, but I do love this world, and especially the people in it. And God and I talk about it a lot, so He's definitely aware of my heretical feelings. I think He understands. His creations are pretty amazing.
I think everyone is a little scared to die. It might be the actual dying, leaving people behind, not knowing exactly what the afterlife will be like, something else, or all three (it's a bit of all three for me, but mostly leaving people behind). Regardless of your personal thoughts, the difference between normal people walking around and those who are handed a ticking clock is that the ones handed the ticking clock are aware that we all have a ticking clock. In normal, every day life, death is easy to put off until old age. For me, it became something that waited around every corner. I wondered what idiot would go sky diving and risk dying sooner. A man sentenced to be executed doesn't typically ask to speed up the date.
I am often told that I am brave. I appreciate the sentiment, and try to live up to it, but I really just do what I have to do. "Afraid" is a better descriptive term for me. All the time, actually. Where others see a beautiful hike along a mountain edge, I see a place that I could accidentally fall to my death. Where some see a passing storm with excess lightning and wind, I see a force that could fling my little home away. Where most would use a little extra caution to traverse winter roads, I would prefer not to go anywhere because I am convinced my family could get in a crash. I think these things (and more, but I won't bore you further with my daily crazies) all the time, but I can't let them control my life. "Ships in harbor are safe, but that is not what ships are built for."
It took me a lot of years, a lot of struggles with my faith, and a lot of anger to realize that God controls my life, and my death. He built me for more than sitting in a harbor. And He will decide when I leave this place, though I will fight like hell going all the way out (He knows that too, we're working on my control issues). But I can take solace in it. I can live my life knowing that it will happen when He chooses, and not before. I still really can't handle the high hiking thing, last time I cried like a baby, I hate heights and edges, but that's another matter. The point is, I know how fragile life is. I worry about it being taken away all the time. And if that sounds like a neurotic way to live, it is. But I also have a very precious view of just how much each moment means, and how involved God is in every second of our days.
So why the morose topic for the night? No, I don't think I'm dying. I haven't considered myself "terminal" for some time. A woman in my parent's church passed away last night, quite suddenly. I didn't know her personally; she prayed for me and spoke to me through Facebook. The loss of her life has already rippled through the social networking community and I have read the pain and disbelief of her passing all day, as well as the sharing of memories. She left behind a daughter around my age who she was incredibly close to. My heart aches for her. I feel so strongly today how fragile life is. Her name was Anita. And her friends and family adored her. I wish that I had known her.
Even for me, with my history and sitting in a hospital room surrounded by people constantly working to prevent me from dying, it is easy to forget that a casual goodbye to a loved one could be my last. It is easy to take daily relationships, even distant ones, for granted. And you know, that's ok. Because that's how we get through each day--by believing there will be another one tomorrow. But it is good to be reminded sometimes, to cherish the seconds, and make memories that will stay with our loved ones even if we can't. It helps put into perspective what matters and what does not. I still hate being here. I hate cancer. I want out of this room and I want to get on with my life. But those things don't really matter. What matters is that I get to be here. My loved ones are all (more or less) nestled in their beds. And I will be here tomorrow morning to keep loving them, and to make more memories.
The fevers seem to have fully passed, but rebuilding blood counts from nothing is not a painless experience. The "storm" will go on for some time. So, after writing this very sporadic and unrefined blog that encompasses so many of my emotions and thoughts over the past years as well as today, it seems fitting to end with a quote I used to have hanging in my room when I was just a teen. "Rise above the storm, and you will find the sunshine." And hug someone you love with a little extra care tonight. Maybe step outside and breathe in some fresh summer air. Listen to birds sing. Heck, go ahead and belt out your own favorite song. Just enjoy it. Every minute.
Sunday, June 7, 2015
Day +4
It appears I was a bit too optimistic about that storm being over after all. Last night was probably one of the worst nights of my life, in terms of physical pain and discomfort, anyway. While most patients still experience "mild fevers" after the first round of chemotherapy, there are apparently a rare few patients whose donor cells just get really pissed off that the chemo is trying to kill them and so they get together to wage one last all-out war. That was my night. My fever started off mild, but when I laid down for bed, it kicked in to high gear. It did not matter what the nurse did, nothing could keep the fever under control. Tylenol wasn't putting a dent in it, so she switched to I.V. Tylenol, which also had no impact. They put me on pain killers to help with the rigors, but they wore off before I was allowed to have them again. I spent the night curled into the fetal position to try and gain any small amount of warmth while nurses placed ice packs all over me. I cried a lot. I hurt. I prayed.
And around 5:00 this morning, when I had finally managed to doze off from sheer exhaustion, my nurse came in to take my vitals and inform me that I was going to have an EKG in ten minutes, and be taken down for a chest x-ray right after that because my breathing had been poor throughout the night and my heart rate was incredibly fast, and the doctors were just slightly concerned with how high my fever was. The results all came back fine. I was just really sick. And the fever remained out of control all morning until the chemotherapy started and then it instantly started breaking. But I felt all my transplant nightmares come to life. Infections the doctors missed or can't control, fevers that go out of control and the cause is unknown, all of these can mean death in a transplant. I've had my fill. I am ready to go home now.
But I don't have a home to go home to anymore. I have an apartment that we didn't like, run by management who say one thing and then put something else on paper. And our dogs are going crazy due to all the stress and back and forth of the past few months and have started attacking each other at random times. And we don't even know what we are going to do or where we will be 6 months from now. I feel like everything is broken. I just want out of this stupid hospital room, I want to go back with my family to our house, get all of our animals back on a routine and happy, and be done with all this stupid cancer crap. It's been 12 years. It's time. I just want to go home.
I haven't slept more than five or six hours total over the past three nights, so I hope a decent night's rest will give me a better spirit to combat the day with tomorrow. But I am terrified to go to bed. My nurse assured me the fevers have passed, but I am scared. Every time I feel a little chilled, I run to check my temperature. I pray for sleep tonight. For sleep, and for peace.
And around 5:00 this morning, when I had finally managed to doze off from sheer exhaustion, my nurse came in to take my vitals and inform me that I was going to have an EKG in ten minutes, and be taken down for a chest x-ray right after that because my breathing had been poor throughout the night and my heart rate was incredibly fast, and the doctors were just slightly concerned with how high my fever was. The results all came back fine. I was just really sick. And the fever remained out of control all morning until the chemotherapy started and then it instantly started breaking. But I felt all my transplant nightmares come to life. Infections the doctors missed or can't control, fevers that go out of control and the cause is unknown, all of these can mean death in a transplant. I've had my fill. I am ready to go home now.
But I don't have a home to go home to anymore. I have an apartment that we didn't like, run by management who say one thing and then put something else on paper. And our dogs are going crazy due to all the stress and back and forth of the past few months and have started attacking each other at random times. And we don't even know what we are going to do or where we will be 6 months from now. I feel like everything is broken. I just want out of this stupid hospital room, I want to go back with my family to our house, get all of our animals back on a routine and happy, and be done with all this stupid cancer crap. It's been 12 years. It's time. I just want to go home.
I haven't slept more than five or six hours total over the past three nights, so I hope a decent night's rest will give me a better spirit to combat the day with tomorrow. But I am terrified to go to bed. My nurse assured me the fevers have passed, but I am scared. Every time I feel a little chilled, I run to check my temperature. I pray for sleep tonight. For sleep, and for peace.
Saturday, June 6, 2015
Day +3
I'm still here. I haven't felt like it the past couple of days, but I am still here. I didn't quite end up on the "I feel like I am dying" side of things, but I definitely fell into the "wow, I am really sick" category. The past two days have been something of a blur for me. They seemed to go agonizingly slow, but now that they are gone it seems like they passed quickly. Day +1 I started out believing I was going to beat the odds and not get the "haplo storm." Colten and I walked, I did my physical therapy, ate a hearty breakfast; I really felt like I had a new lease on life. I had my Katie again and she rooted me on the whole day. But in the late afternoon, the storm hit. At first it wasn't so bad, but as my temperature climbed and the "rigors" (intense shaking) set in, I thought, "wow, I am really sick." The night was long, full of blood cultures and around the clock Tylenol and vitals. But it was over.
Day +2 was a different story. I had the first bad nurse I have ever had on the floor (of course on the day that I am sick) and she took anywhere from 35 minutes to an hour to respond when we called for Tylenol or nausea medication. I could hardly eat. It took every bit of my will power to choke down food and keep it there. I did not walk. The rigors were terrible. My muscles ached from being locked for so long. Honestly, even though it was just yesterday, it is already mostly a blur. My mind tends to do that. Whenever I have really bad times, it just nicely softens the edges for me so that I can't remember much. I do remember my nurse taking so long to get me Tylenol that my rigors were out of control, so they gave me something called Demerol that is a pain and anti-anxiety medication. It was wonderful. I remember seeing my sweet girl's face full of worry, telling me that she loved me and giving me a kiss on the cheek. And I remember hearing the nurse say that my temperature was too high in the middle of the night and that I would need ice packs, to which Colten pleaded that they just have me take my blankets off and see if that helped. I didn't sleep. I just froze and tried to push my mind through to today.
And today came. And the chemo did work like magic. I got out of bed barely able to stand and ready to throw up at the thought of food, but Tina was my nurse and she got things moving quicker than scheduled. She promised me instant results, and she delivered. Colten stayed until he saw the chemo going in, and then went back home to start packing our things to move this weekend. Jen and Rora came to hang out for an hour or so before my parents got here, and I was able to talk to them and enjoy every bit of their company. My parents stayed the whole day and, though I was tired from last night, I felt mostly like I did the first few nights I was here before the transplant. I did start spiking a fever in the late afternoon, but it has been nothing compared to the last couple nights. The nurses told me that mild fevers typically continue after the first round of chemo, but after the second one tomorrow it is just a matter of waiting for my blood counts to come up and I am out of here!
So I made it. It was quite a storm, but I made it. I hate who I am when I am really sick. I like to be kind to people, to talk to people, and when I am sick I just feel grumpy. I try not to be, but I know I am not who I normally am (my hubby might disagree, he takes the brunt of my grumpiness a lot more than most, but I do try to be kind most of the time!). I am happier today being back to myself, laughing with my nurse and enjoying being alive. In my mind, the past two days may as well have never happened. I weathered the storm, it is sunny skies from here. And my hubby is outstanding. I don't know what I would have done without him advocating for me, getting me warm blankets, sitting with me, stroking my hair, anything he could do to help. I have had so many nurses comment on how amazing he is, and how so few patients have the support system that I have with all the family that has come down and Colten staying here so often. I am blessed.
My mom's cells did their job. They waged a war and hopefully already started kicking my cancer to the curb. Now it is time to halt the battle a bit. I am hooked up to round the clock fluids and medicines to protect all my organs from the chemo (it's pretty toxic, I guess). I've never had so many pumps on one pole. It's pretty cool, if you don't have to lug it around. ;-) But after tomorrow night I am pole free (mostly) and fever free. And I am here, which is really all that matters. "Life is not about avoiding the storm, it's about dancing in the rain."
Day +2 was a different story. I had the first bad nurse I have ever had on the floor (of course on the day that I am sick) and she took anywhere from 35 minutes to an hour to respond when we called for Tylenol or nausea medication. I could hardly eat. It took every bit of my will power to choke down food and keep it there. I did not walk. The rigors were terrible. My muscles ached from being locked for so long. Honestly, even though it was just yesterday, it is already mostly a blur. My mind tends to do that. Whenever I have really bad times, it just nicely softens the edges for me so that I can't remember much. I do remember my nurse taking so long to get me Tylenol that my rigors were out of control, so they gave me something called Demerol that is a pain and anti-anxiety medication. It was wonderful. I remember seeing my sweet girl's face full of worry, telling me that she loved me and giving me a kiss on the cheek. And I remember hearing the nurse say that my temperature was too high in the middle of the night and that I would need ice packs, to which Colten pleaded that they just have me take my blankets off and see if that helped. I didn't sleep. I just froze and tried to push my mind through to today.
And today came. And the chemo did work like magic. I got out of bed barely able to stand and ready to throw up at the thought of food, but Tina was my nurse and she got things moving quicker than scheduled. She promised me instant results, and she delivered. Colten stayed until he saw the chemo going in, and then went back home to start packing our things to move this weekend. Jen and Rora came to hang out for an hour or so before my parents got here, and I was able to talk to them and enjoy every bit of their company. My parents stayed the whole day and, though I was tired from last night, I felt mostly like I did the first few nights I was here before the transplant. I did start spiking a fever in the late afternoon, but it has been nothing compared to the last couple nights. The nurses told me that mild fevers typically continue after the first round of chemo, but after the second one tomorrow it is just a matter of waiting for my blood counts to come up and I am out of here!
So I made it. It was quite a storm, but I made it. I hate who I am when I am really sick. I like to be kind to people, to talk to people, and when I am sick I just feel grumpy. I try not to be, but I know I am not who I normally am (my hubby might disagree, he takes the brunt of my grumpiness a lot more than most, but I do try to be kind most of the time!). I am happier today being back to myself, laughing with my nurse and enjoying being alive. In my mind, the past two days may as well have never happened. I weathered the storm, it is sunny skies from here. And my hubby is outstanding. I don't know what I would have done without him advocating for me, getting me warm blankets, sitting with me, stroking my hair, anything he could do to help. I have had so many nurses comment on how amazing he is, and how so few patients have the support system that I have with all the family that has come down and Colten staying here so often. I am blessed.
Wednesday, June 3, 2015
Day 0
The stem cells are in. The transplant is done. Now, we wait. But today was good, though it started slow. I woke up sore and shambled awkwardly out of bed to get down and sit with my mom. To my absolute delight, my favorite nurse (KATIE!) knocked at the door, swung her head around the corner and yelled, "Surprise!" I almost cried when I saw her face. I was so grateful she was doing my transplant. I asked her to postpone my morning infusion so I could sit with my mom and she happily agreed. When I got to my mom, she had not even been able to start donating yet because they were waiting on her labs, so I decided to head back and see if I could get my morning routine done before she got going. I settled in for my infusion and, while contemplating breakfast, started to feel very queasy. This has been happening every morning, and usually if I eat I start to feel better, but I knew today was different. I threw up. A lot. Over and over. If you understand transplants well you know it is a stupid goal, but I had nevertheless set a goal for myself not to throw up during this transplant. I had a major problem with it during my first and second transplants, and I really wanted to overcome it this time. No such luck it seems.
So I called my nurse, got some medicine, took deep breaths, and ordered my breakfast. The food here is not great, but they do allow us access to their coffee/tea stand, and I have been happily ordering a chai latte every morning. It's like Starbucks, but insurance pays for it. :-) I did not want to eat, but I wanted my latte, and I would get through the meal. Unfortunately, when room service (they actually call it that. They want you to feel like you are in hotel with lot's and lot's of needles, medicines, tubes, and other assorted horrors, apparently) showed up and I took a huge gulp of my much needed drink, what could be only be described as burnt black coffee hit my tongue. And I threw up some more. Then I called room service, not in the best of moods. Apparently, they ran out of chai flavoring and just decided to send me up a plain old coffee. Not my thing. So that sucked. And I had that stupid voice in the back of my head saying, "Wow...you are already throwing up, can't even get your morning latte, yep, today is not going to go well." And I told it to shut-up.
I marched back down and sat with my mom (who did amazing, again), then marched back to my room and prepared to face the battle. And then my "birthday cake" showed up. The hospital sends up a piece of cake or pie to celebrate, and I had been given lemon meringue. My favorite. And what I actually ended up facing was an amazing day filled with family and literally endless laughter. First of all, my mom and dad-in-law, along with my sister and brother-in-law were supposed to be leaving for their vacation this morning, but they missed their flight. So, they all stopped in and brought me gag gifts and treats. :-) Then, my hubby and daughter came and I finally got to wrap Rorie in my arms! And I was completely surrounded by family (Farley and Long) during my transplant, which had absolutely no complications. My dad prayed over me as the cells started to go in and he asked that Jesus would calm the coming storm just as He did out on the boat. I felt immeasurable peace. Some people spike fevers immediately, get achy, feel short of breath, etc. I felt wonderful. Loved. Surrounded. Protected. And heavily medicated, it's true. ;-)
Rora played on the floor with her newest toys, zooming around the room and being a kid. The rest of the family laughed and joked the whole time, and my nurse joined right on in. Marcine (my sis-in-law) lovingly commented that my skin looked great and had great coloring. My nurse, without missing a beat, dryly replied, "It's the radiation." The entire room boomed with laughter. A passing PA stuck his head in to see what the ruckus was. My mom-in-law was hysterically laughing in a corner. It was absolutely perfect. I've never had such an amazing transplant, so I feel blessed and able to report that I think we've found the cure. This time, everything is going to be alright. And you know, even if this whole thing doesn't work, I wouldn't trade today for the world.
My hubby and dad went to pick Jen up from the airport, and I sat with my mom and Rora playing games. Then I sat and watched Aurora play with her toys and enlist my mom to play the character of "little sister." You see, she has two butterflies here, and one butterfly with snowflakes on its wings back home, so she composed the story that the two butterflies here were lost and looking for their snowflake mommy, and they were going to ask the horse (another little toy my dad got her) for help. When they asked the horse for help, she told them they would have to find their mommy on their own. At this point I felt the motherly thing to do was insert a small reminder that, if Rorie were alone and lost, she should ask for help and not try to find me on her own. She said, "I know, Mommy," and continued to play. My mom, taking my cue (and being the little sister butterfly) said, "Big sister, maybe we should try and get the horse to help us, not do it on our own. We won't know until we try." Rorie responded (without missing a beat), "I am a mind-reader! I know! She can't help us!" I lost it. I couldn't stop laughing. My stomach hurt. My mouth was sore. It was so unbelievably cute. And the rest of the story was better, but you had to be there. My girl is amazing.
And then my sister walked into my room. I have missed her so much. And when she came in, it was like I had seen her only yesterday. I just know her. Distance and time apart don't matter. And I feel that way with both of my sisters. They are truly my best friends, and I cannot imagine a life without them. That is why I hope so much that Rorie can have siblings someday, because I don't honestly know where I would be had I not been given such extraordinary sisters.
Everyone is gone now, and I am sitting absolutely content with the added reassurance of my husband nearby. I love my family. I love my Savior. I love the blessings I see each day. I love the opportunities that I am given. And while I know that this is likely just the calm before the storm, I resolve to be thankful, and to love my life through the storm, because I know that it will come to an end. One of my favorite quotes is, "The darkest hour is only 60 minutes." And a two-day storm is not the end of the world. Besides, my lifeguard walks on water. And I get to see my sister and my daughter again tomorrow. From here on out it is positive numbered days and an uphill climb. I can't wait to see the view.
So I called my nurse, got some medicine, took deep breaths, and ordered my breakfast. The food here is not great, but they do allow us access to their coffee/tea stand, and I have been happily ordering a chai latte every morning. It's like Starbucks, but insurance pays for it. :-) I did not want to eat, but I wanted my latte, and I would get through the meal. Unfortunately, when room service (they actually call it that. They want you to feel like you are in hotel with lot's and lot's of needles, medicines, tubes, and other assorted horrors, apparently) showed up and I took a huge gulp of my much needed drink, what could be only be described as burnt black coffee hit my tongue. And I threw up some more. Then I called room service, not in the best of moods. Apparently, they ran out of chai flavoring and just decided to send me up a plain old coffee. Not my thing. So that sucked. And I had that stupid voice in the back of my head saying, "Wow...you are already throwing up, can't even get your morning latte, yep, today is not going to go well." And I told it to shut-up.
I marched back down and sat with my mom (who did amazing, again), then marched back to my room and prepared to face the battle. And then my "birthday cake" showed up. The hospital sends up a piece of cake or pie to celebrate, and I had been given lemon meringue. My favorite. And what I actually ended up facing was an amazing day filled with family and literally endless laughter. First of all, my mom and dad-in-law, along with my sister and brother-in-law were supposed to be leaving for their vacation this morning, but they missed their flight. So, they all stopped in and brought me gag gifts and treats. :-) Then, my hubby and daughter came and I finally got to wrap Rorie in my arms! And I was completely surrounded by family (Farley and Long) during my transplant, which had absolutely no complications. My dad prayed over me as the cells started to go in and he asked that Jesus would calm the coming storm just as He did out on the boat. I felt immeasurable peace. Some people spike fevers immediately, get achy, feel short of breath, etc. I felt wonderful. Loved. Surrounded. Protected. And heavily medicated, it's true. ;-)
Rora played on the floor with her newest toys, zooming around the room and being a kid. The rest of the family laughed and joked the whole time, and my nurse joined right on in. Marcine (my sis-in-law) lovingly commented that my skin looked great and had great coloring. My nurse, without missing a beat, dryly replied, "It's the radiation." The entire room boomed with laughter. A passing PA stuck his head in to see what the ruckus was. My mom-in-law was hysterically laughing in a corner. It was absolutely perfect. I've never had such an amazing transplant, so I feel blessed and able to report that I think we've found the cure. This time, everything is going to be alright. And you know, even if this whole thing doesn't work, I wouldn't trade today for the world.
My hubby and dad went to pick Jen up from the airport, and I sat with my mom and Rora playing games. Then I sat and watched Aurora play with her toys and enlist my mom to play the character of "little sister." You see, she has two butterflies here, and one butterfly with snowflakes on its wings back home, so she composed the story that the two butterflies here were lost and looking for their snowflake mommy, and they were going to ask the horse (another little toy my dad got her) for help. When they asked the horse for help, she told them they would have to find their mommy on their own. At this point I felt the motherly thing to do was insert a small reminder that, if Rorie were alone and lost, she should ask for help and not try to find me on her own. She said, "I know, Mommy," and continued to play. My mom, taking my cue (and being the little sister butterfly) said, "Big sister, maybe we should try and get the horse to help us, not do it on our own. We won't know until we try." Rorie responded (without missing a beat), "I am a mind-reader! I know! She can't help us!" I lost it. I couldn't stop laughing. My stomach hurt. My mouth was sore. It was so unbelievably cute. And the rest of the story was better, but you had to be there. My girl is amazing.
And then my sister walked into my room. I have missed her so much. And when she came in, it was like I had seen her only yesterday. I just know her. Distance and time apart don't matter. And I feel that way with both of my sisters. They are truly my best friends, and I cannot imagine a life without them. That is why I hope so much that Rorie can have siblings someday, because I don't honestly know where I would be had I not been given such extraordinary sisters.
Everyone is gone now, and I am sitting absolutely content with the added reassurance of my husband nearby. I love my family. I love my Savior. I love the blessings I see each day. I love the opportunities that I am given. And while I know that this is likely just the calm before the storm, I resolve to be thankful, and to love my life through the storm, because I know that it will come to an end. One of my favorite quotes is, "The darkest hour is only 60 minutes." And a two-day storm is not the end of the world. Besides, my lifeguard walks on water. And I get to see my sister and my daughter again tomorrow. From here on out it is positive numbered days and an uphill climb. I can't wait to see the view.
Tuesday, June 2, 2015
Day -1
Today is the last negative day. That means it all gets real tomorrow, folks. Day 0. D-Day. Transplant day. Today has been a blur. My mom got a picc line placed early this morning and I went to sit with her while she donated. She was amazing, by the way. The nurses went on and on about her. She never got nauseous or dizzy so they were able to go at the fastest speed and she was done in just a couple of hours. She didn't complain about a thing, and even kept pushing my dad around in a crappy wheelchair after the picc line procedure (not ok, not supposed to lift, pull, push, etc. anything over 10 pounds). When she got back to my room she looked like she was about to fall over, so I asked her to go back to her hotel and sleep for awhile. I hope it helped. She does have to donate again tomorrow, but they said that is pretty standard for anyone over 20+ years (so the majority of people donating).
I had to leave towards the end of the donation to go have radiation, which was a breeze. They offered me my choice of Pandora station, and I requested Third Day. I believe God speaks to us. It might be a person He puts in our path at a certain time, a conversation that happens just when you need it, or, in my case, a song that just touches my heart. I needed to hear God speak today. Radiation has never been a problem for me before, but it seems to be the thing that doctors and nurses worry about the most. Regardless of my personal history, if enough people worry about something, they can eventually make you worry, too. So I was worried. Would I get nauseous? Would I feel dizzy? Would my weakened muscles hold me up? God responded pretty quickly. I love Third Day, and any song would have soothed my nerves, but God chose "Mountain of God" to be the very first song I heard today. "And even though the journey's long, and I know the road is hard, well, the one who's gone before me, He will help me carry on, and after all that I've been through, I finally realize the truth, that I must go through the valley, to stand upon the mountain of God." So thankful for a Savior that lives, and that gives me comfort in every moment of doubt and despair. I am going to stand on the mountain.
I felt held today. Loved. Seen. Cherished. I saw my parents this morning, talked to my big sis for a spell, and then spent the early afternoon with the radiation crew (who are their own kind of wonderful). Each of the kind ladies who worked with me thanked me for my choice of Pandora station, and commented on how beautiful the music was. The radiation doc stopped in to mention again what a miracle Rora was and to wish me well on the transplant, and also said, "This station is awesome!" It was nice to be with fellow believers. Then I spent the late afternoon with my newest nurse, Tina, who is now also my favorite (along with Katie). She literally spent almost an hour in my room shooting the breeze and giving me a glimpse into the life of a transplant nurse. Their jobs are rough. But she told me, "It's a balancing act. You always take patients home with you. Patients you love, patients you lose. You take home happiness and you take home agony. But it's worth it, because I go through each day with such a wonderful perspective. No matter what I come up against, I've seen a patient go through worse, and I know that I have it good, so I'm always thankful. And I love my patients. If I can make their lives better, it's worth it." She's amazing. And she loves (and owns) pitbulls, so I like her even more.
I have not really met a nurse here I did not like. This unit is filled with amazing people that I feel blessed just to know and interact with. I do not know how they do what they do every day, it takes very special people, and it would be easy to be distant and cool towards patients and just get the job done. But they aren't. They are warm and funny and caring and all have their own little quirks. I love being here and getting to know them. They also took very good care of my mom. All the nurses met her and complimented her and advised her to rest and take good care of herself. I appreciate it more than I can say. And it's not just the nurses. I'll admit, I honestly have only met a couple of doctors here that I really like, but all of the NP's and LPN's and PA's are also amazing, as well as the aides. My favorite NP is a doppelganger for my Aunt Becky. Colten actually calls her "Becky" when we talk about her, but her real name is Melissa. She was the very first person I met when I came here two years ago, and I have never forgotten her because I feel an instant affection towards her due to how much she reminds me of my aunt. And like my aunt, she is also just an awesome person. She is so laid back and funny, she tells me what is going on straight up and actually listens when I express concerns, or when I tell her that nothing is wrong. She always wears bright colors and fun shoes and she makes my day. I had her for the last time today because she is going back on outpatient rotation for 5 weeks. She said, "I better never see you again on inpatient rotation, you had better be long gone. I'll catch you on the free side." I can't wait.
I realized today how many people are around me and how much they care about me, even though they don't know me that well. And that's true of the many people around the world praying for me, too. It's humbling and comforting. I had very few moments alone today, and many moments of laughter and companionship. The time passed so quickly. I overheard my nurses talking about me today. Tina was telling my night nurse, Amy, how much she loved me and how sad she was that she would not be here to do my transplant tomorrow. Amy responded that she understood because she loved having me as a patient. It felt really wonderful. I hope that no nurse ever leaves my room without feeling appreciated. I hope I can make them smile, give them a room to sit and chat in, and let them take home some happiness for the day. That's my new goal here, to make the day (or night) a little better for each of my nurses. They deserve it, and they give back in kind. I am so blessed.
So many people wanted to talk about my transplant tomorrow. Tina, particularly, wanted to know if I was feeling anxious or excited. I also had a lot of people wish me a new happy birthday tomorrow (most hospitals celebrate transplant day as a birthday as your body is basically being reborn, so I guess I will now have four birthdays). I had not really thought about it. Maybe I didn't want to. It is a very exciting day, but it's also the day there is no turning back from. I could leave the hospital right now and honestly be just fine. I could go home and life could go on as usual. After tomorrow, that all changes. And after tomorrow comes "the storm," which I am worried (terrified, extremely upset, petrified; pick your word of choice) about. In haplo transplants, because the donor is not a complete match, GVHD sets in almost immediately. Some patients manage to avoid what doctors call "the storm," but most don't. Patients get fevers, aches, chills, etc. I've been told the sickness ranges from "Eh," to "Wow, I feel sick," to "Oh my gosh I feel like I'm dying!" This lasts for two days, and then patients are given chemotherapy again for two days and all the symptoms "magically" (that is the word the doctor used) just vanish. Then it's just a matter of waiting for my blood counts to go back up and I am out of here, providing it all goes as planned. Which it will. And everything will be fine. It always is. But I'm scared.
Every time I do this, as I watch the stem cells go into my body, I have to push down the absolute panic I feel knowing that I can't take them out, and I can't control what will happen next. It's a terrifying feeling. Which is probably why they heavily medicate you so that you feel lethargic and disconnected. They say it's to prevent physical reactions, but it probably helps dampen the mental ones, too, because I have yet to yank my line out and run like I have seen myself doing in my head. :-) Tonight I am taking solace in my favorite Bible verse, Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." This verse is written on my heart (and I eventually plan to have it partially written on my back as a tattoo that says "be strong and courageous") and it always brings me comfort. I need it tonight. Please Lord, let everything go well tomorrow, and in the days ahead. Here's to tomorrow.
I had to leave towards the end of the donation to go have radiation, which was a breeze. They offered me my choice of Pandora station, and I requested Third Day. I believe God speaks to us. It might be a person He puts in our path at a certain time, a conversation that happens just when you need it, or, in my case, a song that just touches my heart. I needed to hear God speak today. Radiation has never been a problem for me before, but it seems to be the thing that doctors and nurses worry about the most. Regardless of my personal history, if enough people worry about something, they can eventually make you worry, too. So I was worried. Would I get nauseous? Would I feel dizzy? Would my weakened muscles hold me up? God responded pretty quickly. I love Third Day, and any song would have soothed my nerves, but God chose "Mountain of God" to be the very first song I heard today. "And even though the journey's long, and I know the road is hard, well, the one who's gone before me, He will help me carry on, and after all that I've been through, I finally realize the truth, that I must go through the valley, to stand upon the mountain of God." So thankful for a Savior that lives, and that gives me comfort in every moment of doubt and despair. I am going to stand on the mountain.
I felt held today. Loved. Seen. Cherished. I saw my parents this morning, talked to my big sis for a spell, and then spent the early afternoon with the radiation crew (who are their own kind of wonderful). Each of the kind ladies who worked with me thanked me for my choice of Pandora station, and commented on how beautiful the music was. The radiation doc stopped in to mention again what a miracle Rora was and to wish me well on the transplant, and also said, "This station is awesome!" It was nice to be with fellow believers. Then I spent the late afternoon with my newest nurse, Tina, who is now also my favorite (along with Katie). She literally spent almost an hour in my room shooting the breeze and giving me a glimpse into the life of a transplant nurse. Their jobs are rough. But she told me, "It's a balancing act. You always take patients home with you. Patients you love, patients you lose. You take home happiness and you take home agony. But it's worth it, because I go through each day with such a wonderful perspective. No matter what I come up against, I've seen a patient go through worse, and I know that I have it good, so I'm always thankful. And I love my patients. If I can make their lives better, it's worth it." She's amazing. And she loves (and owns) pitbulls, so I like her even more.
I have not really met a nurse here I did not like. This unit is filled with amazing people that I feel blessed just to know and interact with. I do not know how they do what they do every day, it takes very special people, and it would be easy to be distant and cool towards patients and just get the job done. But they aren't. They are warm and funny and caring and all have their own little quirks. I love being here and getting to know them. They also took very good care of my mom. All the nurses met her and complimented her and advised her to rest and take good care of herself. I appreciate it more than I can say. And it's not just the nurses. I'll admit, I honestly have only met a couple of doctors here that I really like, but all of the NP's and LPN's and PA's are also amazing, as well as the aides. My favorite NP is a doppelganger for my Aunt Becky. Colten actually calls her "Becky" when we talk about her, but her real name is Melissa. She was the very first person I met when I came here two years ago, and I have never forgotten her because I feel an instant affection towards her due to how much she reminds me of my aunt. And like my aunt, she is also just an awesome person. She is so laid back and funny, she tells me what is going on straight up and actually listens when I express concerns, or when I tell her that nothing is wrong. She always wears bright colors and fun shoes and she makes my day. I had her for the last time today because she is going back on outpatient rotation for 5 weeks. She said, "I better never see you again on inpatient rotation, you had better be long gone. I'll catch you on the free side." I can't wait.
I realized today how many people are around me and how much they care about me, even though they don't know me that well. And that's true of the many people around the world praying for me, too. It's humbling and comforting. I had very few moments alone today, and many moments of laughter and companionship. The time passed so quickly. I overheard my nurses talking about me today. Tina was telling my night nurse, Amy, how much she loved me and how sad she was that she would not be here to do my transplant tomorrow. Amy responded that she understood because she loved having me as a patient. It felt really wonderful. I hope that no nurse ever leaves my room without feeling appreciated. I hope I can make them smile, give them a room to sit and chat in, and let them take home some happiness for the day. That's my new goal here, to make the day (or night) a little better for each of my nurses. They deserve it, and they give back in kind. I am so blessed.
So many people wanted to talk about my transplant tomorrow. Tina, particularly, wanted to know if I was feeling anxious or excited. I also had a lot of people wish me a new happy birthday tomorrow (most hospitals celebrate transplant day as a birthday as your body is basically being reborn, so I guess I will now have four birthdays). I had not really thought about it. Maybe I didn't want to. It is a very exciting day, but it's also the day there is no turning back from. I could leave the hospital right now and honestly be just fine. I could go home and life could go on as usual. After tomorrow, that all changes. And after tomorrow comes "the storm," which I am worried (terrified, extremely upset, petrified; pick your word of choice) about. In haplo transplants, because the donor is not a complete match, GVHD sets in almost immediately. Some patients manage to avoid what doctors call "the storm," but most don't. Patients get fevers, aches, chills, etc. I've been told the sickness ranges from "Eh," to "Wow, I feel sick," to "Oh my gosh I feel like I'm dying!" This lasts for two days, and then patients are given chemotherapy again for two days and all the symptoms "magically" (that is the word the doctor used) just vanish. Then it's just a matter of waiting for my blood counts to go back up and I am out of here, providing it all goes as planned. Which it will. And everything will be fine. It always is. But I'm scared.
Every time I do this, as I watch the stem cells go into my body, I have to push down the absolute panic I feel knowing that I can't take them out, and I can't control what will happen next. It's a terrifying feeling. Which is probably why they heavily medicate you so that you feel lethargic and disconnected. They say it's to prevent physical reactions, but it probably helps dampen the mental ones, too, because I have yet to yank my line out and run like I have seen myself doing in my head. :-) Tonight I am taking solace in my favorite Bible verse, Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." This verse is written on my heart (and I eventually plan to have it partially written on my back as a tattoo that says "be strong and courageous") and it always brings me comfort. I need it tonight. Please Lord, let everything go well tomorrow, and in the days ahead. Here's to tomorrow.
Monday, June 1, 2015
Day -2
Today has been a day of self-searching and reminiscing. Colten left early this morning, and that was harder than when he left the first day. It was very easy to get used to having him here 24/7, even though it was only for 2 days. And I was only slightly (incredibly) jealous that he got to go home to my baby girl.
After he left, I felt like someone had punched me in the gut, so I got moving. I gowned-up (sounds kind of like I am a medical super hero) and started my laps around the halls, but I lost momentum very quickly. I just wanted to lay down and be depressed for the day, and I was losing the mental battle. I started back towards my room and suddenly thought of my iPod and headphones that I had yet to use; I decided to throw on some music and give it one more go. Music is my meaning. I feel close to God through music, I express myself through music, I understand myself through music. And I love to sing. And yet, I had not listened to a single note since coming here. I clicked on my iPod and upbeat music fueled my muscles and reignited my determination. I walked to Moriah Peters' song "Brave." The chorus says, "I'll fight like a solider, rise like a warrior, won't stop 'till the final day, look up and I see the way, You make me brave." It was perfect. I sailed through my laps and exercises.
So, I realized music is a necessity here. I plugged into my portable speakers and let it play throughout the room until my space was transformed. At this point I have to admit that I am a diehard Grey's Anatomy fan (or at least I was until Yang left and they killed Derek), and while I know it is little more than a glorified soap opera and I am likely reducing my credibility as I write this, it is my guilty pleasure, and that's that. Anyhow, any fan knows that the main character, Meredith, believes in "dancing it out." This is fairly self-explanatory. When things suck, you dance to really loud music until you don't care that they suck anymore. So I did. And it was awesome. But that only got me to about 11:00 AM. Still a lot of day to get through.
I settled into my throne (the only real chair in the room) and tried to read for awhile. Then I tried watching a TV show. Nothing was making the time pass. And I got a new neighbor who is apparently very well loved and, I'm guessing, lives here in SLC along with his or her family. I watched a steady stream of people coming and going from the room for the rest of the day and I felt very, very lonely. The crappy thing about being an "easy" patient and not having issues is that you don't see the nurses much (unless they are like Katie), and with no one else around and no where to go, it definitely feels like you are doing time in solitary. My sister-in-law surprised me with a video call, and it was a very welcome distraction for a few minutes (I love you Emma!), but not the same as sitting and actually being with someone else. So loneliness settled in for the day, which naturally made me wish I was somewhere else.
My Grandma had written me earlier and got me thinking about better days--the priceless days of childhood. So I sat and thought to myself how amazing it would be to go back and be that pudgy little wild girl again, without a care in the world, untainted by cancer and its demons. To go back to a time without fear of the future, physical pain, or seemingly endless stress. But then I thought about how much I would hate having to go through everything that I have already gone through all over again. Sure, it would be nice to be a kid for awhile, but I'd prefer not to grow up again. So then I thought about what it would be like to go back and make different choices. Maybe my parents would choose the standard chemo instead of the experimental chemo the first time around and the cancer would never come back. Or, maybe I would move away after the second time the cancer came back and it would kill the cancer for good (my family and I are pretty convinced my cancer is caused by the environment: pesticides and other lovely poisons dropped all around and on our yard and house during most of my childhood, as well as other issues throughout that whole section of Idaho). Any one of these things could have made the difference, or no difference at all.
But would I want my life to be changed? I don't believe in soul mates. I don't believe there is only one perfect person out there, or that God has only one planned spouse for us. That's left up to the decisions we make. Free will and all that. And cancer played a huge role in mine and Colten's relationship. Actually, we stopped talking for quite awhile, and my cancer coming back is what made him reconnect with me again. Getting pronounced terminal drove me to move away and live with my best friend, and it just so happened that Colten lived in the same city and we were reunited and fell in love. Would I still be married to Colten if my life was different? Because I can't imagine a world where he isn't my husband. And if I wasn't married to Colten, there would be no Rora. And I just can't accept a world with no Rora. What's more, I have met some really amazing people. I have met people who were told they were going to die, and, miraculously, the treatments cured their cancers. I have met people who were told they were going to die, and they did. But they left marks on my soul before they left. Would I give up the people I have met, the family that I have, the things that I have done, for a life free of cancer? No. No I wouldn't.
And with a little perspective, things just look so different. If I had a choice, I would still choose to be in this place, going through this transplant, and living this life. So it must not be so bad. Lonely, sure, but not so bad. And, having gone through a transplant that lasted a lot longer and was a lot more restricting, this one seems much easier, all things considered. So I'm thankful for that perspective. Heck, after being continuously attached to a pole for two days, I can even appreciate having a central line that's not connected to anything--and I did not think anything could make me thankful to just have a central line. It's all about your mental mindset. Henry David Thoreau said, "It's not what you look at that matters, it's what you see." Dan Brown said, "Sometimes a change in perspective is all it takes to see the light." Both of these quotes touched me today.
My parents showed up late in the evening. My mom looked sore, tired, and worn. I feel sad and sick at what she has to go through to donate to me, just like I felt when my amazing sis donated to me last time. I wish it were easier and free of any discomfort. I wish that people I love did not have to endure pain to see me well. Mostly I wish it was just already over. She donates tomorrow.
We walked around the hospital together, and I saw a ton of people out walking their dogs. This is the first time I have seen anyone here walking a dog, and it opened up a new ache for me. I love my fur babies. I miss them so much. Most people don't get it, I know, but my mom does. It's probably one of the few things we have in common. Animals are such precious souls to me. They give me comfort and companionship that I can't live without. I miss snuggling my puppies and listening to my cat purr next to my ear at night. I have not been sleeping much since I got here, and I think it's because of the lack of warm bodies. I just miss my family. One couple walked by us with an unleashed pooch. He was so cute, and yes, I am that person that wants to pet everyone's dog. He kept hanging back by me and my mom, but he scampered away every time we got in petting range. That's probably just as well because his owners kept looking back with a certain fear in their eyes whenever he didn't immediately follow them. I can't say that I blame them, if someone in my getup came walking by my dog I would be worried. If said person attempted to pet them I am not sure what I would do. Please don't disease my dog! :-)
Today was my last day of chemotherapy (pre-transplant, anyway). Tomorrow I have radiation. Wednesday is my transplant, and I get to see my daughter, and MY SISTER IS COMING! I have not seen her in almost a year. I can hardly wait! All good things are coming. Just one more day (hopefully) for my mom to get through, and then it's all good things. And my nurse gave me a sleep aide, so I'm going to actually go to sleep. I'm adding the pictures that got me through today: all my family that I can't wait to hold.
Good night all.
After he left, I felt like someone had punched me in the gut, so I got moving. I gowned-up (sounds kind of like I am a medical super hero) and started my laps around the halls, but I lost momentum very quickly. I just wanted to lay down and be depressed for the day, and I was losing the mental battle. I started back towards my room and suddenly thought of my iPod and headphones that I had yet to use; I decided to throw on some music and give it one more go. Music is my meaning. I feel close to God through music, I express myself through music, I understand myself through music. And I love to sing. And yet, I had not listened to a single note since coming here. I clicked on my iPod and upbeat music fueled my muscles and reignited my determination. I walked to Moriah Peters' song "Brave." The chorus says, "I'll fight like a solider, rise like a warrior, won't stop 'till the final day, look up and I see the way, You make me brave." It was perfect. I sailed through my laps and exercises.
So, I realized music is a necessity here. I plugged into my portable speakers and let it play throughout the room until my space was transformed. At this point I have to admit that I am a diehard Grey's Anatomy fan (or at least I was until Yang left and they killed Derek), and while I know it is little more than a glorified soap opera and I am likely reducing my credibility as I write this, it is my guilty pleasure, and that's that. Anyhow, any fan knows that the main character, Meredith, believes in "dancing it out." This is fairly self-explanatory. When things suck, you dance to really loud music until you don't care that they suck anymore. So I did. And it was awesome. But that only got me to about 11:00 AM. Still a lot of day to get through.
I settled into my throne (the only real chair in the room) and tried to read for awhile. Then I tried watching a TV show. Nothing was making the time pass. And I got a new neighbor who is apparently very well loved and, I'm guessing, lives here in SLC along with his or her family. I watched a steady stream of people coming and going from the room for the rest of the day and I felt very, very lonely. The crappy thing about being an "easy" patient and not having issues is that you don't see the nurses much (unless they are like Katie), and with no one else around and no where to go, it definitely feels like you are doing time in solitary. My sister-in-law surprised me with a video call, and it was a very welcome distraction for a few minutes (I love you Emma!), but not the same as sitting and actually being with someone else. So loneliness settled in for the day, which naturally made me wish I was somewhere else.
My Grandma had written me earlier and got me thinking about better days--the priceless days of childhood. So I sat and thought to myself how amazing it would be to go back and be that pudgy little wild girl again, without a care in the world, untainted by cancer and its demons. To go back to a time without fear of the future, physical pain, or seemingly endless stress. But then I thought about how much I would hate having to go through everything that I have already gone through all over again. Sure, it would be nice to be a kid for awhile, but I'd prefer not to grow up again. So then I thought about what it would be like to go back and make different choices. Maybe my parents would choose the standard chemo instead of the experimental chemo the first time around and the cancer would never come back. Or, maybe I would move away after the second time the cancer came back and it would kill the cancer for good (my family and I are pretty convinced my cancer is caused by the environment: pesticides and other lovely poisons dropped all around and on our yard and house during most of my childhood, as well as other issues throughout that whole section of Idaho). Any one of these things could have made the difference, or no difference at all.
But would I want my life to be changed? I don't believe in soul mates. I don't believe there is only one perfect person out there, or that God has only one planned spouse for us. That's left up to the decisions we make. Free will and all that. And cancer played a huge role in mine and Colten's relationship. Actually, we stopped talking for quite awhile, and my cancer coming back is what made him reconnect with me again. Getting pronounced terminal drove me to move away and live with my best friend, and it just so happened that Colten lived in the same city and we were reunited and fell in love. Would I still be married to Colten if my life was different? Because I can't imagine a world where he isn't my husband. And if I wasn't married to Colten, there would be no Rora. And I just can't accept a world with no Rora. What's more, I have met some really amazing people. I have met people who were told they were going to die, and, miraculously, the treatments cured their cancers. I have met people who were told they were going to die, and they did. But they left marks on my soul before they left. Would I give up the people I have met, the family that I have, the things that I have done, for a life free of cancer? No. No I wouldn't.
And with a little perspective, things just look so different. If I had a choice, I would still choose to be in this place, going through this transplant, and living this life. So it must not be so bad. Lonely, sure, but not so bad. And, having gone through a transplant that lasted a lot longer and was a lot more restricting, this one seems much easier, all things considered. So I'm thankful for that perspective. Heck, after being continuously attached to a pole for two days, I can even appreciate having a central line that's not connected to anything--and I did not think anything could make me thankful to just have a central line. It's all about your mental mindset. Henry David Thoreau said, "It's not what you look at that matters, it's what you see." Dan Brown said, "Sometimes a change in perspective is all it takes to see the light." Both of these quotes touched me today.
My parents showed up late in the evening. My mom looked sore, tired, and worn. I feel sad and sick at what she has to go through to donate to me, just like I felt when my amazing sis donated to me last time. I wish it were easier and free of any discomfort. I wish that people I love did not have to endure pain to see me well. Mostly I wish it was just already over. She donates tomorrow.
We walked around the hospital together, and I saw a ton of people out walking their dogs. This is the first time I have seen anyone here walking a dog, and it opened up a new ache for me. I love my fur babies. I miss them so much. Most people don't get it, I know, but my mom does. It's probably one of the few things we have in common. Animals are such precious souls to me. They give me comfort and companionship that I can't live without. I miss snuggling my puppies and listening to my cat purr next to my ear at night. I have not been sleeping much since I got here, and I think it's because of the lack of warm bodies. I just miss my family. One couple walked by us with an unleashed pooch. He was so cute, and yes, I am that person that wants to pet everyone's dog. He kept hanging back by me and my mom, but he scampered away every time we got in petting range. That's probably just as well because his owners kept looking back with a certain fear in their eyes whenever he didn't immediately follow them. I can't say that I blame them, if someone in my getup came walking by my dog I would be worried. If said person attempted to pet them I am not sure what I would do. Please don't disease my dog! :-)
Today was my last day of chemotherapy (pre-transplant, anyway). Tomorrow I have radiation. Wednesday is my transplant, and I get to see my daughter, and MY SISTER IS COMING! I have not seen her in almost a year. I can hardly wait! All good things are coming. Just one more day (hopefully) for my mom to get through, and then it's all good things. And my nurse gave me a sleep aide, so I'm going to actually go to sleep. I'm adding the pictures that got me through today: all my family that I can't wait to hold.
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