In other news, Nathan has decided he wants to go back to school.
And I totally support his decision.
We've talked about it on and off over the past year and a half (let go of the missing hyphens, grammar nazis; you know who you are).
This summer, he spent quite a lot of time with two women I trust implicitly: Momma Christine and Momma Bonnie. And they told me that Nathan said that he's going to school in September. Furthermore, he even said which school he's going to, which is the same school he's attended in the past and where Isaac currently goes.
So, I'm cool with this. He'll be 10 on September 10th. And his seizures are under some pretty serious control. He's in a very different place than he was a year and a half ago (now I'm just omitting them to piss you grammar nazis off. Is it working?).
He started a new pharmaceutical medication in April, after I returned from my trip with Stacie to Tucson. And I give this pharmaceutical medication credit for decreasing the seizures so significantly that he was able to play soccer this past spring. (yes I culturally reference myself; it's my blog and I can do what I want.)
Yes, this is his SEVENTH motherfucking pharmaceutical that we've tried to control his seizures. It's what happens when you're diagnosed with Lennox-FUCKING-Gastaut Syndrome, or LGS. There's not really a FUCKING in the name. It's just how I say it. And this syndrome was discovered by two neurologists:
Lennox-Gastaut Syndrome was first defined by Dr. Henri Gastaut in France in 1966 as a very severe form of childhood epilepsy, with certain common features. Dr. William G. Lennox in Boston described features of the EEG in this condition.
So, you gotta say Gas-TOE for Gastaut, because he's a French dude. Ok? Lennox-Gas-TOE. Not Gas-taught. Gas-TOE. And, this is the incredibly rare form of epilepsy that my son has. Of course. Because we Andersons don't do shit half-assed. Oh no. Only FULL-ASSED from the Andersons. (hyphens for the grammar nazis! you're welcome!)
Annnnywaaaayyyy...last week I met with the principal, who is fully supportive of Nathan attending 3 days a week, in the mornings, until about noon-ish. My plan is to roll both boys in at the start of the morning, because it'll be easier on ME to get them both up and moving and out the door at the same time.
And he'll be on the big playground. Because he has friends that he's known his entire life that are on that playground and that are going to want to play with him and who are going to look out for him and who are going to help him.
And he'll be in the lunch room. And he'll have the same special ed teacher, but we don't know who his gen ed teacher will be, but that's ok. We'll figure it out. He will have input.
But this is really exciting for us as a family. Nathan's taking initiative in his own life, and for any kid, it's huge. But for a kid with special needs, it's even bigger.
Monday, August 29, 2016
Saturday, August 27, 2016
Cry For You
I recently had the opportunity to practice yoga in the barn at a local lavender farm in Sequim.
But this isn't just any lavender farm. It's B&B Lavender Farm, and is owned by some very dear friends of ours, Zion and Kristy Hilliker (and her parents, Bruce and Bonnie--it's a family effort!).
But this isn't just any lavender farm. It's B&B Lavender Farm, and is owned by some very dear friends of ours, Zion and Kristy Hilliker (and her parents, Bruce and Bonnie--it's a family effort!).
And the yoga studio I recently started practicing at, Poser Yoga, does these pop up yoga classes every so often in different locations in the community. And while I'm currently unable to get to classes on a regular basis, and I've got a pretty strong yoga practice at home, I couldn't pass up the opportunity to practice with my friend Kristy in her barn. RIGHT? And, even though they have about 20 bazillion bunches of lavender hanging in the barn, the scent of lavender wasn't nearly as strong as I anticipated it would be. It was really hardly noticeable. Seriously. I'm not a huge fan of lavender, but I am a huge fan of supporting my friends and doing yoga with them.
The class was fantastic; there were about 10 people who attended, and no, I didn't know anyone except for Kristy and the teacher, Jenny (who is the owner of Poser Yoga). And it helped bring awareness to what I can add to my own practice to strengthen it; basic poses that have fallen off my radar, like Warrior II and Triangle. Who forgets the Warrior and Triangle series? This girl. Because CANCER makes you forget basic things, including your own name. Anyway, it was a pleasure to practice with a supportive group of strangers. It was humbling and beautiful; challenging and stress relieving.
After the class was over, Zion, who is Master Gardner (basically, this means the dude is a badass and knows more about lavender than I ever thought possible [and I mean that as a compliment]) gave me a tour of the barn where he uses lavender to create everything from lip balm to essential oil to soap to all purpose cleaner to sell in the gift shop. I also got to visit with Kristy, and inevitably we talked about my family's situation (not bad, it's just that it's gonna come up, right? It'd be like if you had a chance to talk to Paul McCartney, you'd talk to him about the Beatles, right? You wouldn't just be like "Yeah, your work with Wings was cool" and you certainly wouldn't say something like "I really liked it when you did 'Say, Say, Say' with Michael Jackson," and leave it at that. Right?! You're gonna ask him about Revolver or Sgt. Peppers. Seriously.)
Annnnnnyway....
Like many people have said to me, Kristy said something like "I don't know what to say. I'm sorry I can't find the right words. I read your blog, and Randy's blog...and I wish I knew what to say that would be helpful."
And, as usual, I said something like, "I don't expect you to know what to say. I am in an incredibly difficult and scary position.... Nobody knows what to say. And nobody wants to be in my position."
But then she said something nobody has ever said to me before, and it impacted me on a very deep level. She said: "when I read your blog, I cry for you. I just cry because I can feel what you're feeling when I read what you write."
And I'm thankful she cries for me. Because I also discovered that day that I don't cry for myself. Or for my situation, or my husband, or my special needs son, or my neurotypical son, and what he deals with in dealing with his family's ailments.
So I've started crying.
A lot.
Because why?
Why me?
Why my family?
Why my husband?
Why my children?
Why?
It's not because "god" pointed a finger and said, "Let's give her breast cancer and him tonsil cancer and him a constellation of brain disorders."
It's not because I curse a lot. Or not enough, in some instances.
It's not because I'm being challenged by "god" to be stronger, or more diligent, or more or less of WHATEVER.
It's not to make me stronger.
It's not because I pissed someone off in a previous life. Or because I was "a difficult child."
It just is.
But, GODDAMNIT I am sick and tired of dealing with these major health crises in my family.
I'm not a crier. My therapist, Jan, who just retired after me seeing her pretty much weekly for 3-1/2 years, can attest that I'm not a crier. I cried on her less than a dozen times. I started seeing her just after Nathan was diagnosed with autism, when he was 6; he'll be 10 on September 10th. And she's been with me through autism, my breast cancer, the death of my father-in-law while I was going through cancer treatment, my husband's cancer, my mother's undiagnosed dementia, and the incredibly rare skin disorder my mother-in-law has. Normally, a therapist will have a person come to them for support with ONE of these issues; but, unlucky me, I get them all at the same time. The experience, insight and support Jan provided me throughout these health issues was a tremendous help.
At one point, she said, "maybe you're like Nelson Mandela, who was forced to embrace his situation and his life's work became that of a great leader and a great man. Maybe you're life's work is to embrace this shitty situation that you're in and you're becoming a great leader, especially in the field of Health. I mean, look at what you went to school to do. Look at what you chose to major in. Look at how you're educating people. Look at the fact that you're a college professor, teaching about Health issues. This is your life's work, Rachel."
And so I find myself working to embrace my situation. To accept it. And with that, it's ok to cry for myself. It's ok to feel sorry for myself, for my family, and to wallow in it for a little bit. To feel weak, as alien as that feeling is for me.
But, it's also important to get up and do Warrior and Triangle. To build strength. To feel strong.
And, it's ok to cry while I'm doing Warrior II. Because sometimes in life, we find ourselves in a dichotomous situation, and it's important to find a balance.
So, thank you Kristy, for being honest and telling me that you cry for me, because I am learning to cry for myself.
It's not because I curse a lot. Or not enough, in some instances.
It's not because I'm being challenged by "god" to be stronger, or more diligent, or more or less of WHATEVER.
It's not to make me stronger.
It's not because I pissed someone off in a previous life. Or because I was "a difficult child."
It just is.
But, GODDAMNIT I am sick and tired of dealing with these major health crises in my family.
I'm not a crier. My therapist, Jan, who just retired after me seeing her pretty much weekly for 3-1/2 years, can attest that I'm not a crier. I cried on her less than a dozen times. I started seeing her just after Nathan was diagnosed with autism, when he was 6; he'll be 10 on September 10th. And she's been with me through autism, my breast cancer, the death of my father-in-law while I was going through cancer treatment, my husband's cancer, my mother's undiagnosed dementia, and the incredibly rare skin disorder my mother-in-law has. Normally, a therapist will have a person come to them for support with ONE of these issues; but, unlucky me, I get them all at the same time. The experience, insight and support Jan provided me throughout these health issues was a tremendous help.
At one point, she said, "maybe you're like Nelson Mandela, who was forced to embrace his situation and his life's work became that of a great leader and a great man. Maybe you're life's work is to embrace this shitty situation that you're in and you're becoming a great leader, especially in the field of Health. I mean, look at what you went to school to do. Look at what you chose to major in. Look at how you're educating people. Look at the fact that you're a college professor, teaching about Health issues. This is your life's work, Rachel."
And so I find myself working to embrace my situation. To accept it. And with that, it's ok to cry for myself. It's ok to feel sorry for myself, for my family, and to wallow in it for a little bit. To feel weak, as alien as that feeling is for me.
But, it's also important to get up and do Warrior and Triangle. To build strength. To feel strong.
And, it's ok to cry while I'm doing Warrior II. Because sometimes in life, we find ourselves in a dichotomous situation, and it's important to find a balance.
So, thank you Kristy, for being honest and telling me that you cry for me, because I am learning to cry for myself.
Wednesday, August 10, 2016
Seven Hours
Today, while Randy Anderson and I were at the cancer center for seven, yes I said SEVEN, hours...
And who gets cancer treatment for seven motherfuckin hours? Jesus it's been a long motherfuckin day!
I don't know how some dear friends of mine, who are also on a cancer adventure drive to Seattle, which is like 2-1/2 hours plus a ferry ride...I mean they go over the night before, but still. Because his treatment was like NINE motherfuckin hours!!! And then those crazy sonsabitches drive HOME after that! That, THAT, is some super motherfuckin powers right there! (Don't correct my grammar, bitches!)
Anywho...
So today, the pharmacist who's mixin up the chemo is a former student of Randy's. Thank you, Jake, for paying close attention in math. Seriously. You're saving lives.
Oh and thanks Randy Anderson for being a kick ass math teacher. That's paying it forward, yo.
So while we were at the cancer center for seven motherfuckin hours, the boys were with their first ever kid sitter, Trey, who is now 20 and home on summer break from college. And Trey took the boys to Salt Creek, which, everybody knows is THE place into be when you're a kid because there are tide pools, and old WWII bunkers, and a park and its beautiful!!! Even on a grey day, like it was today.
And I did not worry about them.
So thanks, Trey, for showing my kids the best day ever. I'm so thankful for you.
And thanks Jackie, you're an awesome mom. I love you.
Monday, August 8, 2016
Excruciating
Being here is excruciating.
We're at the Sequim Cancer Center.
Again.
Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.
The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?
Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.
The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!
So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.
His schedule looks a little like this:
Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.
Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.
Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.
Thursday 7:30 am radiation, and that's it! Out by 8:00 am!
Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.
The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is.
Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?
The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.
And I get it. Because it's not like I haven't been there.
But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...
So.......
You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.
I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!
The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!
Bitches!
Get to it!
All my love always,
Rachel
You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette
Lennon/McCartney
We're at the Sequim Cancer Center.
Again.
Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.
The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?
Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.
The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!
So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.
His schedule looks a little like this:
Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.
Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.
Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.
Thursday 7:30 am radiation, and that's it! Out by 8:00 am!
Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.
The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is.
Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?
The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.
And I get it. Because it's not like I haven't been there.
But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...
So.......
You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.
I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!
The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!
Bitches!
Get to it!
All my love always,
Rachel
You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette
Lennon/McCartney
Sunday, July 31, 2016
Simple Pleasures
Today's simple pleasures include having breakfast in bed with my love...
I also took a long hot shower, scrubbed my entire body with exfoliating gloves, because, you know, intense self care is imperative and it makes me fantasize about scrubbing cancer away. I also shaved my legs, and used all the hot water. Because I'm an adult and I can.
I changed my toe nail polish from "ice queen blue" to "Wonder Woman Yellow." Not that they're really called that. I made those up because I'm clever, and use polish to reflect my moods. Wonder Woman Yellow is appropriate because tomorrow starts an intense week for my family. Randy starts back to chemo on Wednesday. And I'm going with him. Because he needs me to be there. Duh. Like this is a question. Right?
Anyway, the other simple pleasures of the day include:
Ensuring everyone who needs medication got their medications.
Everyone ate as healthy as possible, let it be liquids or solids.
I changed the sheets on our bed and washed our quilts and put them back on the bed. Randy was able to help supervise, which was huge!
Randy actually had the strength to get out of bed and watch some tv, both with and without the boys. More than one episode of "The Twilight Zone" tends to make them scatter.
I had the opportunity to feed Randy several times throughout the day and while the mechanical aspects are smoothing out, the emotional intensity is not much different than making love: It's very intimate, with a mixture of both pleasure and sadness.
We spent a good chunk of the day propped up in bed, coloring. It helps pass the time as the thickish smoothies use gravity to drain the syringe into the tube and into his stomach. We have learned that if the smoothies are too thin, it goes in too fast and his stomach gets upset.
We are slowly picking ourselves up and we are moving forward. Who knew we'd be so thankful for such simple pleasures: showers, television, food. But also, I am thankful that my body works the way I need it to. I am thankful I am able to throw some nutrient dense foods into the vitamix and whip up several meals for Randy in one session. I'm thankful I'll be at the appointment with the nutritionist on Tuesday at the cancer center, with my husband, so I can learn more about his specific needs and how to help him better. I am thankful for friends who help us.
I am choosing to end my evening by relieving stress and anxiety: smoking an Indica, practicing yoga, and going to sleep.
Namaste' dudes.
Friday, July 29, 2016
G Tube
Well, the G-Tube is in.
What's a G-Tube, you ask?
A G-Tube is this tube that sticks outta your stomach so you can feed yourself smoothies.
Basically.
You're injecting pureed food into your stomach, with a syringe, to stay alive.
No shit.
It went down a little something like this...
It went down a little something like this...
First, the nurse at the hospital took this tube and rubbed some anal ease or numbing lube or some shit on it and then he shoved this tube up Randy's nose and slithered that motherfucker all the way down into his stomach. For reals. And Randy took it like a champ and only said "FUCK THAT HURTS!" once. Well, it was more of this deep, animalistic type of scream. He didn't really say that. He more or less yelled it. Did I say they put some numbing lube on the tube? Yeah, well, I'm not sure that it was really that numbing. That tube going up and then down probably burned like a red hot motherfuckin' poker. Right?! Sweet Jesus! Poor dude.
This tube was used to put air into his stomach so it would inflate and they could then cut it open. I don't know all the science behind it. I just know it fucking works. And it hurts like a motherfucker going in.
This tube was used to put air into his stomach so it would inflate and they could then cut it open. I don't know all the science behind it. I just know it fucking works. And it hurts like a motherfucker going in.
Then they took him in get a CT so they could make sure where to make the incision on his abdomen. And, through this incision, they'll stick another tube. Into his stomach. Right. Because you don't wanna be sticking a goddamned feeding tube into a person's liver. Right? Motherfucker.
So, while he still had the tube in his nose, which ended in his stomach, the super cute CT girl finds his stomach, makes her mark, and then they wheel him back to the procedure room. This room has some fancy pants name, but in my world it's known as the "CUT YOUR HUSBAND OPEN AND KEEP HIM ALIVE WITH A TUBE IN HIS STOMACH" room.
And there was some kind of radiation emitting x-ray machine that they were going to use, and my head was spinning...breathe...keep breathing...in...out...in...out...in...out....
So, while he still had the tube in his nose, which ended in his stomach, the super cute CT girl finds his stomach, makes her mark, and then they wheel him back to the procedure room. This room has some fancy pants name, but in my world it's known as the "CUT YOUR HUSBAND OPEN AND KEEP HIM ALIVE WITH A TUBE IN HIS STOMACH" room.
And there was some kind of radiation emitting x-ray machine that they were going to use, and my head was spinning...breathe...keep breathing...in...out...in...out...in...out....
So, they created a sterile field in the room, and anything that's blue you're not supposed to touch. Right! Got it! No touchy the blue.
Wait.
EVERYONE IS WEARING BLUE!!!!! I can't even make a joke about Smurfs, because really, it's overdone. But the bottom line is, I'm not wearing blue, so I'm getting the fuck outta there. Seriously. Not my area of expertise. I'm a Health Educator. Not a nurse. Not a physician. No. Not me. Never wanted to be that responsible for others. The irony is not lost on me.
Right. So, I'm in purple, I'm the odd girl out, I'm not in blue. It's cool you guys. Bye, dude. I love you. Kiss him bye, and leave the room, sending up chi to the universe, as I walk out, Please Sweet Baby Jesus, no seizures. Please Sweet Baby Jesus, NO MOTHERFUCKING SEIZURES!!!!! Have a little mercy, please, universe. God. Whoever. Whatever. We're good people. We don't deserve this. It's not fair. Fuck you cancer. Fuck you. Thank you medical science for keeping him, and really, my entire family, alive. Thank you.
They gave him some serious dope. But he was awake through the whole thing. Doesn't recall a second of it, but he was awake.
The doc made an incision in the middle of his belly, because apparently his abdomen sits a little high in his body cavity, and they cut through skin and fat (which there isn't a whole lot of fat because the dude has lost 14 fuckin pounds since his first chemo on 7/13!) and then kept cutting into the muscle and then into his stomach.
RANDY WAS AWAKE FOR THIS!!!!!!!!!!! And, again, thank you medical science. Thank you to the chemists for inventing amazing drugs that make this possible. Oh, and special shout out to the person who invented drop cloths, because there was probably a sheild between him and his stomach, kinda like they do when a woman has a C-section. I presume....I'm not jumping on the web to research...other things to do...like vent my life to my blog. It's a form therapy, you guys.
Then the doc used some contraption to pull his stomach up as close to his skin as they could get (go with me on this) and some how locked his stomach in place by using three silver disc-shaped objects that are on the outside of his body. They are about the size of a dime, maybe a little smaller, and they look like magnets. But I don't know what they are. All I know is that eventually they'll fall off and if I find one in the sheets, I'm not supposed to freak out. Right? That's really all I need to know about that.
So then they took a second tube that wasn't as long as the nose pokin' tube, but was way bigger around in circumference, than the nose pokin' tube...and they stuck this tube into his stomach, and then they basically put him back together all nice and neat.
Except there's like 6 inches or so of a TUBE STICKING OUT OF MY HUSBAND'S STOMACH.
And I have to feed him. I don't have to feed him. I get to feed him. With a huge syringe.
Well that's my version of it. I'm gonna let Randy tell you his perspective. It's coming. Don't worry.
And then we got home about 5 pm after they discharged him from the hospital, he puked. So, you know that sucked. And he puked for hours.
Because, really, is that tube gonna shoot across the fuggin room? Did we just waste a ton of time and money and stress and anxiety for a tube to shoot across the room because he's still puking?!?! Ain't nobody got time for that.
So that's when I called Home Health. Because, the doc put in the orders. And, seriously, we are so thankful we have amazing health insurance and so thankful that Nurse Jackie came. Late. At almost 9 pm. But she's the on-call and this is her retirement job and so she does it because she wants to, not because she has to. And she came over and scooped Randy up off the bathroom floor, and got some meds in him and showed me how to properly feed him and then he crashed hard.
And I learned that no, the tube will not shoot across the floor. Thank the Sweet Baby Jesus. Right? And I learned that Nurse Jackie used to work in the NICU. Her entire career. And she's a mom of two boys.
And the reason she came late was because it's her job. But also, because I said, basically, "My husband is a stage 4 tonsil cancer patient, we have to be at the cancer center every morning by 7:25 so that he can get his radiation treatment, and the reason we got the G-Tube is for him to survive because the radiation and the chemo are killing his sense of taste. So, if you can please come tonight, when my two boys, who are ages 9 and 7, are not here, and one of them has epilepsy and autism, so if you're not able to come tonight, please tell me what to do...." Because, really, I don't like to play the Special Needs Parent Card. But, if you're gonna play the Special Needs Parent Card, that was totally the time to do it. I need to advocate for myself and my husband. I'm not ashamed to do so.
So, anyway, he's been surviving on liquids. Ensure. Boost. Tomorrow I'll start making smoothies.
I may just make chicken cordon blue, just to be a bitch, and put it in the Vitamix.
Who am I kidding?
That meal takes waaaaayyyyyyy too much energy to make.
On the upside, the dude can consume calories again.
And hopefully tomorrow will be better. We'll have another home health nurse come check on us.
So so SO thankful to have made the decisions we did when we were younger to enable us to have the health insurance that we do. Why not everyone in America has the same privilege is beyond me.
But right now, I gotta go whip up a $5 milkshake and get it in a syringe and into Randy's tummy to keep him alive.
No pressure.
Wait.
EVERYONE IS WEARING BLUE!!!!! I can't even make a joke about Smurfs, because really, it's overdone. But the bottom line is, I'm not wearing blue, so I'm getting the fuck outta there. Seriously. Not my area of expertise. I'm a Health Educator. Not a nurse. Not a physician. No. Not me. Never wanted to be that responsible for others. The irony is not lost on me.
Right. So, I'm in purple, I'm the odd girl out, I'm not in blue. It's cool you guys. Bye, dude. I love you. Kiss him bye, and leave the room, sending up chi to the universe, as I walk out, Please Sweet Baby Jesus, no seizures. Please Sweet Baby Jesus, NO MOTHERFUCKING SEIZURES!!!!! Have a little mercy, please, universe. God. Whoever. Whatever. We're good people. We don't deserve this. It's not fair. Fuck you cancer. Fuck you. Thank you medical science for keeping him, and really, my entire family, alive. Thank you.
They gave him some serious dope. But he was awake through the whole thing. Doesn't recall a second of it, but he was awake.
The doc made an incision in the middle of his belly, because apparently his abdomen sits a little high in his body cavity, and they cut through skin and fat (which there isn't a whole lot of fat because the dude has lost 14 fuckin pounds since his first chemo on 7/13!) and then kept cutting into the muscle and then into his stomach.
RANDY WAS AWAKE FOR THIS!!!!!!!!!!! And, again, thank you medical science. Thank you to the chemists for inventing amazing drugs that make this possible. Oh, and special shout out to the person who invented drop cloths, because there was probably a sheild between him and his stomach, kinda like they do when a woman has a C-section. I presume....I'm not jumping on the web to research...other things to do...like vent my life to my blog. It's a form therapy, you guys.
Then the doc used some contraption to pull his stomach up as close to his skin as they could get (go with me on this) and some how locked his stomach in place by using three silver disc-shaped objects that are on the outside of his body. They are about the size of a dime, maybe a little smaller, and they look like magnets. But I don't know what they are. All I know is that eventually they'll fall off and if I find one in the sheets, I'm not supposed to freak out. Right? That's really all I need to know about that.
So then they took a second tube that wasn't as long as the nose pokin' tube, but was way bigger around in circumference, than the nose pokin' tube...and they stuck this tube into his stomach, and then they basically put him back together all nice and neat.
Except there's like 6 inches or so of a TUBE STICKING OUT OF MY HUSBAND'S STOMACH.
And I have to feed him. I don't have to feed him. I get to feed him. With a huge syringe.
Well that's my version of it. I'm gonna let Randy tell you his perspective. It's coming. Don't worry.
And then we got home about 5 pm after they discharged him from the hospital, he puked. So, you know that sucked. And he puked for hours.
Because, really, is that tube gonna shoot across the fuggin room? Did we just waste a ton of time and money and stress and anxiety for a tube to shoot across the room because he's still puking?!?! Ain't nobody got time for that.
So that's when I called Home Health. Because, the doc put in the orders. And, seriously, we are so thankful we have amazing health insurance and so thankful that Nurse Jackie came. Late. At almost 9 pm. But she's the on-call and this is her retirement job and so she does it because she wants to, not because she has to. And she came over and scooped Randy up off the bathroom floor, and got some meds in him and showed me how to properly feed him and then he crashed hard.
And I learned that no, the tube will not shoot across the floor. Thank the Sweet Baby Jesus. Right? And I learned that Nurse Jackie used to work in the NICU. Her entire career. And she's a mom of two boys.
And the reason she came late was because it's her job. But also, because I said, basically, "My husband is a stage 4 tonsil cancer patient, we have to be at the cancer center every morning by 7:25 so that he can get his radiation treatment, and the reason we got the G-Tube is for him to survive because the radiation and the chemo are killing his sense of taste. So, if you can please come tonight, when my two boys, who are ages 9 and 7, are not here, and one of them has epilepsy and autism, so if you're not able to come tonight, please tell me what to do...." Because, really, I don't like to play the Special Needs Parent Card. But, if you're gonna play the Special Needs Parent Card, that was totally the time to do it. I need to advocate for myself and my husband. I'm not ashamed to do so.
So, anyway, he's been surviving on liquids. Ensure. Boost. Tomorrow I'll start making smoothies.
I may just make chicken cordon blue, just to be a bitch, and put it in the Vitamix.
Who am I kidding?
That meal takes waaaaayyyyyyy too much energy to make.
On the upside, the dude can consume calories again.
And hopefully tomorrow will be better. We'll have another home health nurse come check on us.
So so SO thankful to have made the decisions we did when we were younger to enable us to have the health insurance that we do. Why not everyone in America has the same privilege is beyond me.
But right now, I gotta go whip up a $5 milkshake and get it in a syringe and into Randy's tummy to keep him alive.
No pressure.
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