Plan: Morning Wake Up
Reality: Morning NO!
Plan: Exercise!
Reality: Exer...sighs...
Plan: Gourmet Breakfast!
Reality: Fine... I better eat something...
I guess nothing ever really goes as planned.
Wednesday, January 16, 2013
New Normal - Morning Routines
Things have definitely changed for me. It will be a while before I can resume the normal daily activities that I once took for granted, like waking up at a reasonable hour. In my mind I'm a normal 26-year-old, and I make plans like a normal 26-year-old. However, my body feels as if it's 86-years-old and often has other plans.
Plan: Morning Wake Up
Plan: Morning Wake Up
Tuesday, January 15, 2013
49ers Visit Stanford
So, this post has been a long time coming. But hey, cellularly speaking I'm only 7 months old so it's amazing I'm even writing this right now.
Back in June of 2012, the 49ers came to Stanford Hospital to to raise awareness about a rare heart disease, and to also visit some of the cancer patients. I was back in the hospital for my transplant. It had been about a week since my stem-cell/bone marrow transplant and I was in the throes of pretty gnarly mucocitis. It's a common side-affect of intensive chemotherapy, full-body radiation, and a bone marrow transplant.
It's okay if you have no idea what that is. I hadn't any idea even though they warned me about it. I literally prayed to the universe that I wouldn't get it. After that I was pretty confident I would be that one patient who didn't get mucocitis.
But of course I got it - and really bad. I mean, really bad. Even some of my nurses said it was really bad, so you know it was bad.
Basically what happens when you get mucocitis is you develop hundreds of sores all over your mouth, tongue, down your esophagus and even in your stomach lining. Just imagine the pain from chewing a mouth-full broken glass and jagged metal and swallowing it - and then multiply that pain by 100.
I developed mucocitis right away, and for three weeks I couldn't eat, speak, drink, or even swallow my own spit without experiencing excruciating pain. I was in so much pain that my doctors had to keep upping my pain medication, until I was getting constant drips of morphine and fentanol (another powerful opiate). The opiates, however, didn't do much except provide me with a constant stream of confusing and slightly amusing hallucinations... but that's another story.
Needless to say, when the 49ers came to the hospital on June 8th, I had been living off liquid food, hadn't been able to speak, and was hallucinating about toddlers and spiders. So, when my nurse came in that morning to tell me Alex Smith was going to be visiting me in my hospital room, naturally I had no idea what she was talking about. Apparently a lot of the patients were going out to the field to meet some of the players, but Alex Smith heard that I couldn't leave my room due to my transplant, and he decided instead to come see me.
When my nurse told me this, my first thought was: "Who are you and why am I the only one who sees that creepy lady in the corner of the room?"
When I realized I hadn't asked this aloud, my next question was: "Who's Alex Smith?"
Of course, it came out: "ooofffss owssphth phlsssth?"
To tell you the truth, I hardly remember that day. Morphine does crazy things to your sense of time, in that time ceases to exist. I know that it was during the day, since the window was lit up with what I can only assume was sunshine (unless there was a big-rig with it's high-beams on outside my room, which, at that time, was just as plausible), and then suddenly there were several people in my room, including my sister and dad, two camera people, a couple of my nurses, one of my doctors, and this really tall, good looking guy wearing a red shirt with an 11 on it.
I remember thinking: "Hey, this guy's not wearing his mask." (Everyone who came into my room had to wear a mask.) And then when I saw that no one else seemed to care, I decided I'd let it slide this time. After introductions, I quickly realized that I knew nothing about football and nothing about Alex Smith. (Apparently he's a quarterback...).
I also remember apologizing for the state of me: I hadn't showered or changed my clothes in a couple days, my face was swollen from mucocitis, and my bald head was as shiny as a flesh-colored balloon. But soon none of that mattered. Suddenly, I couldn't... stop... talking...
Whenever I get nervous or embarrassed I start blabbering until someone else starts talking. Add my nervous blabbering to my hallucinating mind and my swollen mouth and the result is a slurring, disjointed, lengthy account of the last nine months of my life with cancer. Alex Smith listened to me blabber on and even laughed at my jokes - so he's gets an A+ for life. Coolest guy ever.
Back in June of 2012, the 49ers came to Stanford Hospital to to raise awareness about a rare heart disease, and to also visit some of the cancer patients. I was back in the hospital for my transplant. It had been about a week since my stem-cell/bone marrow transplant and I was in the throes of pretty gnarly mucocitis. It's a common side-affect of intensive chemotherapy, full-body radiation, and a bone marrow transplant.
It's okay if you have no idea what that is. I hadn't any idea even though they warned me about it. I literally prayed to the universe that I wouldn't get it. After that I was pretty confident I would be that one patient who didn't get mucocitis.
But of course I got it - and really bad. I mean, really bad. Even some of my nurses said it was really bad, so you know it was bad.
Basically what happens when you get mucocitis is you develop hundreds of sores all over your mouth, tongue, down your esophagus and even in your stomach lining. Just imagine the pain from chewing a mouth-full broken glass and jagged metal and swallowing it - and then multiply that pain by 100.
I developed mucocitis right away, and for three weeks I couldn't eat, speak, drink, or even swallow my own spit without experiencing excruciating pain. I was in so much pain that my doctors had to keep upping my pain medication, until I was getting constant drips of morphine and fentanol (another powerful opiate). The opiates, however, didn't do much except provide me with a constant stream of confusing and slightly amusing hallucinations... but that's another story.
Needless to say, when the 49ers came to the hospital on June 8th, I had been living off liquid food, hadn't been able to speak, and was hallucinating about toddlers and spiders. So, when my nurse came in that morning to tell me Alex Smith was going to be visiting me in my hospital room, naturally I had no idea what she was talking about. Apparently a lot of the patients were going out to the field to meet some of the players, but Alex Smith heard that I couldn't leave my room due to my transplant, and he decided instead to come see me.
When my nurse told me this, my first thought was: "Who are you and why am I the only one who sees that creepy lady in the corner of the room?"
When I realized I hadn't asked this aloud, my next question was: "Who's Alex Smith?"
Of course, it came out: "ooofffss owssphth phlsssth?"
To tell you the truth, I hardly remember that day. Morphine does crazy things to your sense of time, in that time ceases to exist. I know that it was during the day, since the window was lit up with what I can only assume was sunshine (unless there was a big-rig with it's high-beams on outside my room, which, at that time, was just as plausible), and then suddenly there were several people in my room, including my sister and dad, two camera people, a couple of my nurses, one of my doctors, and this really tall, good looking guy wearing a red shirt with an 11 on it.
I remember thinking: "Hey, this guy's not wearing his mask." (Everyone who came into my room had to wear a mask.) And then when I saw that no one else seemed to care, I decided I'd let it slide this time. After introductions, I quickly realized that I knew nothing about football and nothing about Alex Smith. (Apparently he's a quarterback...).
I also remember apologizing for the state of me: I hadn't showered or changed my clothes in a couple days, my face was swollen from mucocitis, and my bald head was as shiny as a flesh-colored balloon. But soon none of that mattered. Suddenly, I couldn't... stop... talking...
Whenever I get nervous or embarrassed I start blabbering until someone else starts talking. Add my nervous blabbering to my hallucinating mind and my swollen mouth and the result is a slurring, disjointed, lengthy account of the last nine months of my life with cancer. Alex Smith listened to me blabber on and even laughed at my jokes - so he's gets an A+ for life. Coolest guy ever.
About a month after his visit the gravity of his visit hit me: I had met Alex Smith, quarterback for the 49ers. Woah. I hadn't met anyone famous in my entire life. (I get start struck when meeting people who've met famous people.) Of course the one time I do meet someone famous I was a slurring mess (and I probably didn't smell too great either). Worse, I hardly remembered the visit. Fortunately my sister had recorded it on my cell phone. I watched it and was horrified. Not only had I looked like a slobbering mess (is my head THAT big?!), but I had no idea what the hell I was talking about!
"Why didn't you shut me up?" I asked my nurse after I found out that I'd spent the entire visit blabbering incoherently at Alex Smith.
She said, "It was the first time you'd spoken in two weeks! I'm amazed you were able to talk at all." Then she added, "And, yeah, none of us knew what the hell you were talking about."
Oh well. It made for a memorable visit on my end and on Alex Smith's end. This would not be the end of Alex Smith and the 49ers' kindness, about which I'll be blogging another time...
Here's a link to the story about the 49ers Push-Up Contest at Stanford (which was the reason they came out there), (I'm in minute 2:25!): http://www.49ers.com/media-gallery/videos/49ers-Push-Up-Challenge-at-Stanford/7b8473cf-9201-4265-bbb8-83b61b2cc690
Alex Smith's visit was one of the few things I remember from my weeks in the hospital, post-transplant. And it pretty much made my whole year!
Damn... I should have asked for his autograph...
Monday, January 14, 2013
Meanwhile...
Somewhere, on a typical Saturday night...
Meanwhile, I'm refilling my pill box for the week.
Saturday nights are now officially Pill Day. I spend a good hour unwrapping 56 bean-sized, individually packaged pills:
It's great fun, and I'm in bed by 10! Plus, the wrapping makes great kitty toys!
Except when this happens:
Monday, December 17, 2012
Lap Time
So, one of the hardest long term side effects of chemotherapy, radiation, and a bone marrow transplant is extreme fatigue. Most days I struggle to get the simplest of chores done, like laundry or taking a shower. I get tired just standing and brushing my teeth. So when the opportunity to procrastinate comes up, I usually jump at it. Which leads me to Lap Time.
When you have a cat, Lap Time presents itself as one of those golden opportunities to procrastinate. It's is our duty as cat owners to honor Lap Time. Lap Time is a sacred occasion when your kitty blesses you with purrs and cuddles. I would equate Lap Time with being knighted by the Queen. Lap Time is a holy time. We change out plans for Lap Time.
This happens almost everyday:
When you have a cat, Lap Time presents itself as one of those golden opportunities to procrastinate. It's is our duty as cat owners to honor Lap Time. Lap Time is a sacred occasion when your kitty blesses you with purrs and cuddles. I would equate Lap Time with being knighted by the Queen. Lap Time is a holy time. We change out plans for Lap Time.
This happens almost everyday:
Honor the Lap Time.
(And get someone else to get groceries.)
Thursday, December 6, 2012
Cancer-versary
It's my cancer-versary! Exactly one year ago today I was first diagnosed with Acute Lymphocytic Leukemia. Last year, I was so sure I would not live to see my twenty-sixth birthday, and here I am looking forward to my twenty-seventh.
To celebrate this milestone, I'm looking back on all the things I've learned (good and not so good) in the past year.
1. Receiving TREATMENT for cancer often sucks worse than merely HAVING cancer.
I swear, chemotherapy was created to kill you and your cells faster than cancer. It's liking sending in a dragon to chase off the ogre terrorizing the villagers.
2. Prednisone (a.k.a ROIDS) are The Worst Ever.
Only those who have had to take prednisone truly understands just how much Prednisone sucks. And we can safely add (2a. perhaps) Roid-rage is a very real thing.
3. Walking keeps you regular.
More often than not, a good walk is more effective than a hefty laxative.
4. Nurses are luminous archangels sent from Heaven to scare away evil chemo minions. Seriously.
To this day, I never had a single nurse anywhere that wasn't completely devoted to my care. Plus, they always have all the happy medicine.
5. No matter how many times I try to explain it to my friends and family, I will never know how a stem cell transplant works. To this day, it doesn't seem like it should be possible at all.
It's an immune system transplant. It makes as much sense to me as a brain transplant - it shouldn't work, but it does! (Check out my posts on my transplant here.)
6. Sadly, the excuse "But I have cancer" stops working eventually.
I've had to relearn how to cook and clean up after myself. Sigh...
7. There is a difference between HAVING menopausal symptoms and actually GOING THROUGH menopause.
Either way, you still get hot flashes.
8. I will likely get secondary cancer (cancer that comes from cancer treatment, like radiation) in my lifetime.
Totally lame.
9. Time is a fickle thing.
One year can simultaneously feel like twenty years and one month.
10. You can be twenty-five twice.
Cancer stole my twenty-fifth year, so I'm going to redo twenty-five years. It's also easier number to remember than... 26? I forget...
11. Chemo brain is very real.
It doesn't go away as fast as some chemo symptoms. I can't even count the times I've gotten up to go to the bathroom, and ended up in the living room only to realize three hours later that I really really have to pee.
12. Cancer would have broken me if I hadn't reached out to people going through the same thing.
I love all my friends I met through the LLS website and forums.
13. Gluing googly eyes to everything is always hilarious.
14. Toilet paper ain't got nothin on wet wipes.
I don't think I'll ever go back to two-ply...
15. "Neutropenia" is not a color, it is a condition.
I've learned a whole new vocabulary after a year of cancer treatment, and most of it involves numbers.
16. Getting into remission was only the beginning of my cancer journey.
Cancer will follow me for the rest of my life, in the form of pills, doctors appointments, lifelong effects of chemo and radiation, and the fear of recurrence.
17. My parents are awesome and are superheroes.
18. Yoga is the best for recovery and helps you cope with chemo side effects.
But damn is it hard.
19. A cat purring on your face is the best medicine.
To celebrate this milestone, I'm looking back on all the things I've learned (good and not so good) in the past year.
1. Receiving TREATMENT for cancer often sucks worse than merely HAVING cancer.
I swear, chemotherapy was created to kill you and your cells faster than cancer. It's liking sending in a dragon to chase off the ogre terrorizing the villagers.
Only those who have had to take prednisone truly understands just how much Prednisone sucks. And we can safely add (2a. perhaps) Roid-rage is a very real thing.
3. Walking keeps you regular.
More often than not, a good walk is more effective than a hefty laxative.
4. Nurses are luminous archangels sent from Heaven to scare away evil chemo minions. Seriously.
To this day, I never had a single nurse anywhere that wasn't completely devoted to my care. Plus, they always have all the happy medicine.
5. No matter how many times I try to explain it to my friends and family, I will never know how a stem cell transplant works. To this day, it doesn't seem like it should be possible at all.
It's an immune system transplant. It makes as much sense to me as a brain transplant - it shouldn't work, but it does! (Check out my posts on my transplant here.)
6. Sadly, the excuse "But I have cancer" stops working eventually.
I've had to relearn how to cook and clean up after myself. Sigh...
Now it's like:
7. There is a difference between HAVING menopausal symptoms and actually GOING THROUGH menopause.
Either way, you still get hot flashes.
8. I will likely get secondary cancer (cancer that comes from cancer treatment, like radiation) in my lifetime.
Totally lame.
9. Time is a fickle thing.
One year can simultaneously feel like twenty years and one month.
10. You can be twenty-five twice.
Cancer stole my twenty-fifth year, so I'm going to redo twenty-five years. It's also easier number to remember than... 26? I forget...
11. Chemo brain is very real.
It doesn't go away as fast as some chemo symptoms. I can't even count the times I've gotten up to go to the bathroom, and ended up in the living room only to realize three hours later that I really really have to pee.
12. Cancer would have broken me if I hadn't reached out to people going through the same thing.
I love all my friends I met through the LLS website and forums.
13. Gluing googly eyes to everything is always hilarious.
14. Toilet paper ain't got nothin on wet wipes.
I don't think I'll ever go back to two-ply...
I've learned a whole new vocabulary after a year of cancer treatment, and most of it involves numbers.
Cancer will follow me for the rest of my life, in the form of pills, doctors appointments, lifelong effects of chemo and radiation, and the fear of recurrence.
17. My parents are awesome and are superheroes.
18. Yoga is the best for recovery and helps you cope with chemo side effects.
But damn is it hard.
19. A cat purring on your face is the best medicine.
Damn, I love my kitty.
Here's to many more cancer-versaries and twenty-fifth birthdays!
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