Some of the highlights from the walk was the cheering on from the LLS volunteers!
Sunday, November 23, 2014
Tis the Season... for Thank Yous!
I want to thank all who donated to my Light the Night team, the Walkin' Wendys. Thanks to your generosity, we raised over $2300! And many thanks goes to my team who hoofed it all around Walnut Creek and helped spread the word about LLS and all they do for cancer patients, survivors and caretakers.
Some of the highlights from the walk was the cheering on from the LLS volunteers!
Some of the highlights from the walk was the cheering on from the LLS volunteers!
Saturday, October 11, 2014
Light the Night 2014
It's time to Light the Night again!
This year my team and I are walking to raise funds and awareness for blood cancers. The Leukemia and Lymphoma Society has been a great resource during my cancer treatment and ever since I've been (literally) back on my feet, and they've continued to be a great source of support.
I was amazed at the turn out last year, and felt so inspired seeing so many survivors, fighters and caregivers all rallying together. Here's some pictures from last year!
Click here to find out more information about LLS's Light the Night, for events near you and how you can donate/volunteer/participate. Check out my team website below if you want to donate to my team, the Walkin' Wendys, or you can even join us on October 25th if you like!
http://pages.lightthenight.org/gba/EastBay14/WMuller
This year my team and I are walking to raise funds and awareness for blood cancers. The Leukemia and Lymphoma Society has been a great resource during my cancer treatment and ever since I've been (literally) back on my feet, and they've continued to be a great source of support.
I was amazed at the turn out last year, and felt so inspired seeing so many survivors, fighters and caregivers all rallying together. Here's some pictures from last year!
Click here to find out more information about LLS's Light the Night, for events near you and how you can donate/volunteer/participate. Check out my team website below if you want to donate to my team, the Walkin' Wendys, or you can even join us on October 25th if you like!
http://pages.lightthenight.org/gba/EastBay14/WMuller
Thursday, October 2, 2014
Follow Me On Facebook
I started a Facebook page!
Hopefully this page will help connect more of us cancer patients and survivors, and anyone else who's interested in crappy drawings about bone marrow transplants.
Also, here's something interesting: If I went back in time twenty years and tried to explain "following someone on Facebook" to my 8-year-old self, her 1990s mind would probably imagine the following:
So, follow me on Facebook and let's see what happens!
Hopefully this page will help connect more of us cancer patients and survivors, and anyone else who's interested in crappy drawings about bone marrow transplants.
Also, here's something interesting: If I went back in time twenty years and tried to explain "following someone on Facebook" to my 8-year-old self, her 1990s mind would probably imagine the following:
So, follow me on Facebook and let's see what happens!
Wednesday, October 1, 2014
Passengers
I'm back!
No, I'm not dead. I've been balancing my human life with my post-cancer body, and that has left little time in between to really sit down blog. (Is "blogging" the same as "complaining"? I think so...)
Anyway, now that work and life has slowed I bit I'm able to assess how things are going. I met a fellow BMT survivor recently and we discussed our lasting symptoms from treatment, and how you can be rid of cancer, but cancer will never be rid of you. It is a stain that cannot be washed away.
She then described cancer with a car and driver metaphor. I loved it, took it and put my spin on it.
No, I'm not dead. I've been balancing my human life with my post-cancer body, and that has left little time in between to really sit down blog. (Is "blogging" the same as "complaining"? I think so...)
Anyway, now that work and life has slowed I bit I'm able to assess how things are going. I met a fellow BMT survivor recently and we discussed our lasting symptoms from treatment, and how you can be rid of cancer, but cancer will never be rid of you. It is a stain that cannot be washed away.
She then described cancer with a car and driver metaphor. I loved it, took it and put my spin on it.
The moment you're diagnosed with cancer, the disease carjacks you, bloodies you up and throws you in the trunk. So begins the joyride you enjoy from the cramped, dark space next to the spare tire.
Then you start treatment.
You break yourself out of the trunk, take the driver's seat, and shove cancer into the passenger seat. For a while you both sit side by side, sometimes the cancer grabs the wheel and steers you into on coming traffic, because let's face it cancer is a sociopath. It's constant nagging and side-seat driving nearly drive you insane (pun intended).
You break yourself out of the trunk, take the driver's seat, and shove cancer into the passenger seat. For a while you both sit side by side, sometimes the cancer grabs the wheel and steers you into on coming traffic, because let's face it cancer is a sociopath. It's constant nagging and side-seat driving nearly drive you insane (pun intended).
Finally, you're in remission.
Cancer gets shoved into the backseat. It kicks your seat and continues to backseat drive, but your focus is on the road.
Cancer gets shoved into the backseat. It kicks your seat and continues to backseat drive, but your focus is on the road.
Eventually cancer slinks into the trunk where it will stay with the rest of your emotional (and literal) baggage. Maybe you get a trailer hitch and stow it in that, but in the end it will always be a passenger.
Along the way down this highway, you pick up some hitchhikers. Side-effects of the chemo, emotional and physical trauma. Passengers that, like your cancer, refuse to take a hint and get the hell out of the car. And they will not shut up.
These are some of my most persistent passengers.
They are constant companions in my post-cancer life. Now that I have rejoined the human world and have new passengers: a job, bills and, dare I say, responsibilities, I feel like I'm driving in a clown car of annoyances.
My passengers constantly compete for my attention. Work will scream for its bottle, while Dry Eye begins poking my eyes. Sleep tugs on one leg while Night Cramps tug on the other. Hunger scrapes my insides while Pill Nausea punches me in the gut. Migraine jackhammers into my skull while I chase Student Loan around the house for stealing my wallet.
How do I manage it all? I'm not sure I do. "Coping" is a better word. "Manage" implies some kind of organization. My approach is to drop one thing to deal with the other. The one that nags and stabs and shrieks the loudest wins - those invariably are my cancer passengers.
I used to get mad that so many of these passengers still dominate so much of my life. I'm over two years out of transplant. Why couldn't I just suck it up and get better already? But then, after a long conversation with other BMTers, I realized that, I am ONLY two years away from transplant. I practically died and came back to life two years ago. Compared to a two-year-old zombie, I think I'm doing pretty good.
At least I'm not a torso on a lawn.
At least I'm not a torso on a lawn.
Tuesday, March 25, 2014
Damn My Eyes!
I haven't posted in a while. I have been getting acquainted with my new GVHD friend: Chronic Dry Eye.
I'm fairly certain that my body thinks I'm a dead Egyptian pharaoh. With my dry mouth, dry eyes (and other possible dryness), I'm all the more closer to becoming a dry, shriveled up mummy.
Dry eye, as the name suggests, is a condition where your lacrimal glands (ie: tear ducts, think of any Goth song that involves the word "lacrimosa") no longer function properly, producing little or no moisture for the eyes. It occurs in 60-90% of BMT recipients, so unfortunately this does not make me special. It just makes me 60-90% miserable. It's like the Dust Bowl, but for your eyes!
As a result, my eyes experience all kinds of dryness throughout the day.
There's the Desert Eye, dry and desolate, pretty self-explanatory:
And the Sandy Eye, similar to the Desert Eye, but with more gritty, grainy feeling, like someone's kicked sand in my eyes:
Then there's the Glass Eye, my personal favorite, when it feels like I have ground-up shards of glass in my eye:
And of course the Lazy Eye, where my eyelids start to stick to my eyeball and blinking takes more effort than normal:
And what I like to call the Eye of Sauron, in which my eyes are wheels of fire (unfortunately, I have not yet gained the ability to see great distances or spot Hobbits wearing Rings of Power):
With all this (and new levels of pain each day!), I have also discovered that I can no longer cry. That's right. My eyes can no longer physically shed tears.
I did a medical experiment on myself. I watched the saddest movies I have ever seen, movies that have historically proved to utterly reduce me to a sobbing mess curled up on the floor.
(Tears of the Sun and Hotel Rawanda if you're wondering. I would have also watched Life is Beautiful but at that point I had concrete proof that I could no longer cry, and watching a cry-movie when you can't cry is like trying to take a shit when your constipated. It's unpleasant.)
If I did not cry while watching these movies, I would know that I am either (a) a heartless flesh-beast or (b) no longer capable of expressing common human emotions.
Immediately I knew it was not option (a), as within moments of the movies starting I began sniffling, with my breath catching in my throat, getting all red-faced. Alas, the only thing I was missing was the tears.
I'm fairly certain that my body thinks I'm a dead Egyptian pharaoh. With my dry mouth, dry eyes (and other possible dryness), I'm all the more closer to becoming a dry, shriveled up mummy.
Dry eye, as the name suggests, is a condition where your lacrimal glands (ie: tear ducts, think of any Goth song that involves the word "lacrimosa") no longer function properly, producing little or no moisture for the eyes. It occurs in 60-90% of BMT recipients, so unfortunately this does not make me special. It just makes me 60-90% miserable. It's like the Dust Bowl, but for your eyes!
As a result, my eyes experience all kinds of dryness throughout the day.
There's the Desert Eye, dry and desolate, pretty self-explanatory:
And the Sandy Eye, similar to the Desert Eye, but with more gritty, grainy feeling, like someone's kicked sand in my eyes:
Then there's the Glass Eye, my personal favorite, when it feels like I have ground-up shards of glass in my eye:
And of course the Lazy Eye, where my eyelids start to stick to my eyeball and blinking takes more effort than normal:
And what I like to call the Eye of Sauron, in which my eyes are wheels of fire (unfortunately, I have not yet gained the ability to see great distances or spot Hobbits wearing Rings of Power):
With all this (and new levels of pain each day!), I have also discovered that I can no longer cry. That's right. My eyes can no longer physically shed tears.
I did a medical experiment on myself. I watched the saddest movies I have ever seen, movies that have historically proved to utterly reduce me to a sobbing mess curled up on the floor.
(Tears of the Sun and Hotel Rawanda if you're wondering. I would have also watched Life is Beautiful but at that point I had concrete proof that I could no longer cry, and watching a cry-movie when you can't cry is like trying to take a shit when your constipated. It's unpleasant.)
If I did not cry while watching these movies, I would know that I am either (a) a heartless flesh-beast or (b) no longer capable of expressing common human emotions.
Immediately I knew it was not option (a), as within moments of the movies starting I began sniffling, with my breath catching in my throat, getting all red-faced. Alas, the only thing I was missing was the tears.
There is something very cathartic about the feel of warm, salty tears rolling down your cheek. It is a feeling I probably won't ever have again (unless they invent robotic implants for people like me.) My eyes are constipated.
Oh! Speaking of implants, I now have plugs in my tear ducts to help keep what little moisture I do get on my eyes from draining away too quickly. They are little sticks smaller than a grain of rice, and they just shove 'em right down into the tear ducts. Did you know the human eye has a tear duct in the upper lid, too? I sure didn't, until the doctor started shoving sticks up there. Fascinating.
The punctal plugs (as they are officially called) don't seem to be working, but I limp through the day with eye gel, prescription eye drops and warm compresses. Fortunately, my eyes only hurt when I use my eyes, so there's that.
I guess I shouldn't complain. I could be blind. However, that silver lining only gets me so far, and after an hour of Glass Eye getting my eyes gouged out seems pretty enticing.
Anyway, if I don't cry at your funeral, this is the reason why. (Or maybe I just wasn't that into you.)
Oh! Speaking of implants, I now have plugs in my tear ducts to help keep what little moisture I do get on my eyes from draining away too quickly. They are little sticks smaller than a grain of rice, and they just shove 'em right down into the tear ducts. Did you know the human eye has a tear duct in the upper lid, too? I sure didn't, until the doctor started shoving sticks up there. Fascinating.
(I was too lazy to draw this myself)
The punctal plugs (as they are officially called) don't seem to be working, but I limp through the day with eye gel, prescription eye drops and warm compresses. Fortunately, my eyes only hurt when I use my eyes, so there's that.
I guess I shouldn't complain. I could be blind. However, that silver lining only gets me so far, and after an hour of Glass Eye getting my eyes gouged out seems pretty enticing.
Anyway, if I don't cry at your funeral, this is the reason why. (Or maybe I just wasn't that into you.)
Tuesday, January 28, 2014
Here's Something Embarrassing
So, here's something really embarrassing that I'll probably regret sharing to the entire Interwebs. But here I go! (*Waves to parents*)
To prepare for my transplant, I had to undergo a series of orientations to help cope with all the crap (literal and figurative) that I would encounter before, during and after said transplant.
Most of these orientations involved me in a group of at least seven other transplant patients, along with their caretakers/family members. Often times I was the youngest patient in the group, by at least forty years. (I like to think they called me Baby-Face McGee.)
The orientation I'd like to talk about today, however, is one I call Cancer Sex-Ed. Cancer Sex-Ed involved much more than Sex-Ed for transplant survivors, but I only remember the most embarrassing moment of this orientation. The Sex-Ed part was meant to help survivors cope with their messed up genitals and their (depressing?) sex-life post-treatment.
After going over other things, like GVHD, immunosuppressants, and other typical, gender-neutral side effects of a bone marrow transplant, the nurse leading the orientation went into what women - and only women - get to look forward to after all the cancer crap. In most cases, after radiation, chemo and a bone marrow transplant women's bodies are forced into premature menopause.
"In combination with premature menopause and treatment," said Nurse-Face McGee, "most women experience vaginal dryness."
Oh, did I forget to say that I was the ONLY female transplant patient in the room?
So, for a very brief, very embarrassing moment, "vaginal dryness" became "my vaginal dryness". And then the orientation became about my vag and how messed up it would become after my transplant.
To make matters better (worse? apocalyptic?), Nurse-Face proceeded to explain different types of lubes and jellies I could use to overcome said dryness. Did I mention my parents AND a stranger's parents were present? Listening with their ears? Thinking thoughts? Thoughts that involved my lady-bits? It was like having a pap smear in front of an audience.
I think it was also the Male Patient's birthday. Happy birthday, Strange Male! Worst (best?) present ever!
Anyway, that happened.
Moral of the story? Uh, how about, make sure you're not the only lady patient in the room during talks about malfunctioning cooters. That's why ladies go to the bathroom in pairs.
One thing I've learned from cancer treatment is that there is no such thing as privacy or dignity.
To prepare for my transplant, I had to undergo a series of orientations to help cope with all the crap (literal and figurative) that I would encounter before, during and after said transplant.
Most of these orientations involved me in a group of at least seven other transplant patients, along with their caretakers/family members. Often times I was the youngest patient in the group, by at least forty years. (I like to think they called me Baby-Face McGee.)
The orientation I'd like to talk about today, however, is one I call Cancer Sex-Ed. Cancer Sex-Ed involved much more than Sex-Ed for transplant survivors, but I only remember the most embarrassing moment of this orientation. The Sex-Ed part was meant to help survivors cope with their messed up genitals and their (depressing?) sex-life post-treatment.
After going over other things, like GVHD, immunosuppressants, and other typical, gender-neutral side effects of a bone marrow transplant, the nurse leading the orientation went into what women - and only women - get to look forward to after all the cancer crap. In most cases, after radiation, chemo and a bone marrow transplant women's bodies are forced into premature menopause.
"In combination with premature menopause and treatment," said Nurse-Face McGee, "most women experience vaginal dryness."
Oh, did I forget to say that I was the ONLY female transplant patient in the room?
With my mom...
And my dad...
And one other MALE patient...
With his mom...
And his dad
So, for a very brief, very embarrassing moment, "vaginal dryness" became "my vaginal dryness". And then the orientation became about my vag and how messed up it would become after my transplant.
To make matters better (worse? apocalyptic?), Nurse-Face proceeded to explain different types of lubes and jellies I could use to overcome said dryness. Did I mention my parents AND a stranger's parents were present? Listening with their ears? Thinking thoughts? Thoughts that involved my lady-bits? It was like having a pap smear in front of an audience.
I think it was also the Male Patient's birthday. Happy birthday, Strange Male! Worst (best?) present ever!
Anyway, that happened.
Moral of the story? Uh, how about, make sure you're not the only lady patient in the room during talks about malfunctioning cooters. That's why ladies go to the bathroom in pairs.
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