I left off with the anticipation of them putting this poison in my body to kill the cancer that’s already there, but they have to get it ready first so they’re filling time and my veins with fluids and anti-emetics so I don’t immediately start vomiting.
Then the chemo comes in its little brown bag, and I’m not much of a drinker, but there are about a million other things I’d rather have served in a little brown bag. Cheesecake, maybe. I get hooked up, and thankfully can’t taste it.
The dietitian comes and tells me what I need to be eating, which it turns out, is anything and everything I can tolerate because I’m going to be sick. I had lost 60 pounds this year and was derailed here for a minute, but I wanted to keep going, and she told me I’m not supposed to lose more than 20 pounds in the four months of chemo because it won’t be the good weight loss like I’d been doing, it will be just muscle loss and my healing will take longer. She told me to eat five to six small meals a day and stay active, and then we talked about my poop a lot. You can stop reading here if it’s too much, I would.
Anyone who knew me before this knows I don’t talk about that stuff. I actually have a public restroom phobia and can’t do that in public restrooms. I once got sick at work and drove home on my lunch to do it. I don’t do that. Period. So to have to talk to strangers about that is really uncomfortable. And to tell all of you is almost as bad.
But here’s the worst part of the whole transaction with the dietitian. While she’s talking to me about poop, this man comes up and says my name and he has a big box, and I immediately thought, “Someone sent me flowers!” And he dropped the box on the floor and made me sign my life away. I’m not sure, but I think I may have given him Sunshine. The dietitian said, “It’s your pump.” Wa-wah…so, no flowers? No, it’s my pump I had to rent so they could send me home with yet another
poison chemo to pump into my body for the next two days. BUT, I got a black fanny pack to carry that around.
So, let me get this straight. Not only have I been here for seven hours, and gotten two kinds of chemo for a solid two of those hours, I actually have to take one of these bags home with me attached to “Peggy” and wear it in a fanny pack for the next two days? Seems reasonable. How do I sleep? And inside the giant box is stuff in case I want to eventually self-remove the needle when the chemo is done. Well, my caregiver is Sunshine and you know what happens to her when there’s any medical speak so she’s going to be no help. You should have seen her when I told her that inside that box was a chemo spill kit in case my hoses come apart and I have to don a hazmat suit and clean that poison up. She was not pleased.
And they just added another thing I have to carry out. So I have my Hamilton bag with my things to entertain me that I couldn’t focus on. I have my work bag with my laptop to test if I can work from there. I can’t. I have my purse, I have my mom, and I have a giant box to carry out. And it has been a long day. Velma, the nicest nurse on the planet, walked us down to the valet and then left me and I was bundled because of this whole cold thing I was told not to mess with. They said if I drink anything cold it will feel like my throat is closing up. It isn’t, but it will feel like that. And what it actually feels like is I’m swallowing broken glass. Don’t ask me how I know.
I was standing in the vestibule waiting for my car and I was sweating because I was so bundled, but I didn’t have my gloves or scarf on because I was going to pass out, it was so hot in there. The minute I stepped out into the Colorado evening, I realized why they said not to mess with the cold. My hands started stinging and tingling and my face went numb and I couldn’t get into my car fast enough with my two bags, my giant box, my purse, my mom in the dust. Can’t wait for you, my hands are burning off. They weren’t, but they sure felt like it. I immediately put my gloves on and covered my face and started warming the car. It was that fast after chemo that the cold intolerance side effect started. Can’t wait for the others. Hey, when does that heart attack feeling start because I’m particularly psyched for that one.
The nausea started Thursday night and went straight into Sunday night. The cold was an issue, and the first night I slept with mittens on. Mittens on and a pump on my nightstand that made a whooshing sound every time it was pumping chemo into me. That wasn’t distracting at all. I got up to go to the bathroom in the night (number 1) and I got four steps before I realized I was getting ready to yank my needle out because I was connected to a fanny pack on my nightstand. Friday I started working on the combination of those three anti-nausea prescriptions and didn’t find a good combination until about never. Monday morning I woke up and just felt better.
Some more weird things. I have no taste for anything sweet, so far sweets have given me heartburn. Everything is more sensitive, like my scalp when I brush it, my skin when I itch it. I have a weird ring rash on my stomach and another rash thing on my shoulder. I can go out in the cold now, but I can’t touch anything cold and my drinking water still has to be lukewarm. That’s supposed to go away just in time for me to get another round next Thursday. And I’ve lost 10 pounds because I was too sick to eat anything substantial all weekend and all I have a taste for is protein so I’m not getting those pounds back. So much for only 20 pounds in 4 months. My teeth hurt, my mouth feels weird, and my nose is somehow both runny and dry.
Things I’ll do better next time. I will not drive to Fort Collins the day after chemo hooked to a pump so Tenderheart can see grandma. I will figure out the smaller meals every three hours because that seems to be what works, and I’ll have a better plan for what to eat. I will tell them their pre-medications suck and give me the good stuff. I will not take my work computer because their internet is too slow and not secure. I will wear my gloves, maybe ski mittens, out of the hospital along with my hat and scarf.
The pharmacist said this process is predictably predictable so at least I know with the next chemo on the 20th, I’ll be feeling better by Christmas Eve. Just in time to bundle up and go to a candlelight service and downtown for the lights.
Next up, my conspiracy theory about why they’ll never prevent cancer…
The first day of chemo was scary and surreal and terrifying. One, because I haven’t actually come to terms with the fact that I have cancer, but here we are, exactly three weeks after that fateful colonoscopy, and there I am getting ready to get hooked up to this poison that’s so toxic the nurse has to put on a hazmat suit. That’s going inside me?
And how do they even know this works? Get ready for my next blog on how cancer is big business, and I’ll do more research but I think medical bills are the number one reason people go bankrupt. So you get to live but…I guess that’s the most important part.
I got my port the previous Friday so on chemo day I go first thing bright and early to check that baby out and give her a spin. They flush “Peggy”, which sounds horrible and isn’t great and I can taste the saline and it gives me a headache. I was not prepared for that. She gave me a mint and said that happens sometimes and I said, I hope I can’t taste that chemo. It’s too toxic to be touched, what’s it going to do to my taste buds?
I then meet with my oncologist, Doogie Howser’s little sister, who tells me I’m going to meet with a pharmacist to go over my medications for anti nausea. Remember when I said they gave me three prescriptions for anti nausea, and I said, How sick am I going to be if I need three prescriptions? I found out the answer to that. We talk about what’s going to happen with the chemo and she goes over how cold is too cold for me to go outside. The answer is, not that cold, as I found out when I left without my gloves on.
Then I’m supposed to wait in this room for the pharmacist but also go to get hooked up to chemo downstairs and I am nervous. Get ready for the breakdown that’s coming. The pharmacist never comes and we wait about 20 minutes and I cannot be in this room anymore so I leave. I told the guy I was going downstairs to where my next appointment was and the pharmacist could meet me there.
The problem on top of everything else happening that day is I get really anxious if I’m late. I don’t want anyone waiting on me. And I also need to get this show on the road. It’s been two weeks since I found out I needed chemo and I have a schedule and I do better mentally if I’m able to stick to that. And my day is already going to be really long, I need to get this going.
I go down to the chemo room and there’s nowhere to check in, it’s a weird setup, and there are a lot of sick people. Like people who look sick. I know I’m sick but I don’t look sick because they won’t let me lose an unhealthy amount of weight while I’m on chemo. I mean, I looked sick this day because I had a wire hanging out of my port and I’m in the cancer clinic but I wasn’t in a wheelchair, I have my hair, it was my first one. One of my biggest fears is that I’m going to look sick.
While I’m waiting I have a complete breakdown in the lobby. I’m so nervous and Sunshine has to go to work so she’s getting ready to leave. Thankfully my mom is there but as Sunshine was leaving, all my anxiety of the unknown just spewed out. And here’s the problem, I know I have to do this. They’ve laid out a plan with my best chances of survival and here it is. I know on that Thursday I have to have chemo so let’s go already. Enough with the waiting because the unknown is what’s giving me so much anxiety.
I somehow compose myself and they come get me and my mom and I walk to bay 24 and meet my adorable nurse Velma who puts me as much at ease as someone can. What also puts me at ease is the woman in bay 23 who is so nice and friendly and says, “Hey, we just saw you guys in the lobby.” Great, was I crying? Probably.
Her name was Rebecca and she was a little older than me and she had ovarian cancer, which she thought was a bladder infection. She went to the emergency room five weeks previous to this and demanded a CT scan and they found an aggressive form of cancer that had already spread. She had her ovaries, uterus, appendix(!), and six inches of her colon removed three weeks prior and got her port that morning. She told me her ex husband died a few years ago with a brain tumor and she had to tell her two daughters she had cancer. I somehow held it together.
First thing she asked is, Are you going to lose your hair? And I said, No, but I can’t go out in the cold and we live in Colorado. Not as bad as her losing her hair. She and her husband were very nice people and we chatted through my nervousness.
In this cancer business, there is a lot of hurry up and wait. Velma has to get my height and weight and then the pharmacy had to make my vat of chemo based on that so you know I got a supersized dose of that poison and I’m comfortable-ish, comfortable adjacent in that the rooms were nice enough but I can’t concentrate on anything. I can’t read a book, I can’t test the internet connection to see if I can work from there, I am so nervous, I can’t do anything but stare at my mom who seems perfectly content staring back at me.
Then the pharmacist shows up and immediately melts my irritation of not showing up earlier because she’s so nice and I need her. She goes over my medication and a lot more side effects. She gets to the one where it might make me feel like I’m having a heart attack and I start crying. It’s too much. I’m at the “this is not happening to me” stage and not even close to the “why is this happening to me” stage. I’m still in denial and they’re getting ready to hook me up to this poison that they cover in a brown bag so you know it’s chemo and it’s going to for sure make me feel like shit, for sure make my hands and face burn when I walk outside, a lot of other side effects, and potentially make me feel like I’m having a heart attack. It’s too much.
This is me pre-breakdown but looking very nervous.
To be continued…
The week before chemo was a whirlwind. I say the same words over and over now. Whirlwind, surreal, cancer, literally, surreal. If you knew me before this, you may remember I haven’t always had my life together. In fact, I’m one of those people who do everything last minute or never. For instance, my car tag expired in May, but two other kids’ cars expired in May and I couldn’t afford mine. And then Tenderheart didn’t take her car to school so, score.
I’ll be honest, my car expired in May, but I’m so used to not getting my tag in a reasonable amount of time that I was able to scrape down the month side and find a July. Well, that gave me three more months-ish and then I didn’t drive it because I had Tenderheart’s. Then I got cancer and Sunshine’s car broke down and I had to dust mine off and get the tags. Because who doesn’t want to spend the week of chemo at the emissions place and then the DMV? I mean, really, who?
So I have a plan. Chemo on Thursday and I work every day at 1:00 so Monday is emissions, Tuesday is DMV, Wednesday is picking up my mom at the airport and breakfast, haircut, Target, and washing my comforter. My cousin Cari asked if I was getting all my stuff done before chemo rendered me useless and I panicked. Luckily, she told me she hadn’t actually read the side effects, and “rendered useless” is thankfully not one of them. In fact, they want you to be as active as you can, I was just taking care of the germiest places I could think of before my white blood cells were rendered useless.
I went to the emissions place on Monday and it was the first Monday of the month and this woman who worked there was screaming at people to go home. She hasn’t seen my chemo week schedule. She was actually walking out to where the cars were waiting to pull in and yelling at them to leave. She is a prime example of how people don’t know what’s going on in other people’s lives so you should always be kind. Well, I’m a terrible person. She walked up to me because I was next to pull into the place and she said, “Go home! If you see it this crowded, go home and come back tomorrow.” I said, “I’m starting chemo tomorrow so this is the only time I have.” (Maybe literally) And she said, “Oh, bummer”… but I rolled up my window for the rest. Listen, I know it’s cold and your job is terrible, but you’re providing a service that we have to have. And yes, I know I wasn’t starting chemo the next day, but I could have been!!
However, the next day I was not-so-bright-and-early at the DMV. I’ve been blessed that my family has helped get my children cars, which means more time for me at the DMV. They used to know me by name. But I haven’t been there in a while, which she pointed out when she said incredulously, “Your tag expired in May?!?” Yes, it sure did. And while I know my immune system is fine at this point, I’m hyper aware of these germy kids not covering their mouth and of where I’m touching. All is smooth at the DMV except I thought they would give me a December month tag because that’s what they usually do when I wait a year and a half to get my tags, but she said it would be due in May, which is weird because my car says July. I was thisclose to being legal.
Tuesday night I get almost zero sleep. I haven’t been sleeping much because I’m still going over my ailments and I’ve been working late to try not to use all my sick time. I’m exhausted but I’m up and out the door Wednesday morning at 7am to get my mom from the airport. We called in the Calvary. Sunshine started her new big-girl job and my mom wanted to come in and help. We had a lot to do, but we went to Village Inn for breakfast because I had a coupon. They told us it’s free pie Wednesday. Score! But not for another hour and a half. Wa-wah. Two people offered us free pie but not until it started in another hour and a half. I asked if I could bring my receipt back and get free pie and she said, “That’s a good idea but no.”
Anyway, long story long, I got everything done including the laundromat where I finally washed my comforter, and I’m maybe ready for chemo. Let’s get this ish going. Except don’t because I’m terrified.
Welp, you have cancer, any questions? Nope, can’t think of one. But what are the top questions that you think of?
1. Am I going to die?
2. Will I lose my hair?
When my dad called to tell me he had pancreatic cancer, he had to hand the phone to my stepmom because he was too upset. I said, “I don’t understand, is he going to die?” And she said, “We’re all going to die, Christy.”
Helpful. Yeah, but like, now? The answer to that was, “Yes,” and in about three weeks from that call.
The surgeon I met with said “curative”. You listen for certain words. The GI who did my colonoscopy said “most likely curable”. I don’t want to hear “months to live,” “quality of life,” I want to hear “curable” or “curative,” which I don’t think I’ve ever heard used but I do like the sound of it.
Number 2. Will I lose my hair? Why is our hair such an important part of our identity? Maybe because I grew up in the ’80s and my hair was fantastic. I had the most amazing hair that I spent hours on. I also blame my generation for what happened to the ozone layer because of Aqua Net. In fact, when I moved to Colorado, I was buying aerosol hairspray at the grocery store and the cashier said, “Who cares about that ozone layer, huh?” I’ll never forget that. Judge much?
Tenderheart’s friend wrote an amazing article about our hair being our identity and then she just shaved hers off. That was so brave. I’ll post a link to the article when I’m not blogging in bed. And she’s a pretty girl so she looked amazing with and without hair.
However, here’s why I was concerned about losing my hair — I have the biggest head you’ve ever seen. I can’t imagine what this thing looks like without hair. Our family name is Day and if you’re a Day and I say, “I have the Day head,” you should know exactly what I mean. I look just like my Uncle Bob. We have big heads, it’s just a fact. It’s hard to find a hat that comes down far enough to cover it. Every stocking cap is a beanie. There’s a special website that sells hats for big heads and I should be a spokesperson. You get the point. I wouldn’t be a cute hairless person. And listen, of course if I lost my hair, I would be fine, but luckily, the kind of chemo I’m getting doesn’t have that side effect.
It does have some really weird side effects that my sister made me read through and I haven’t been able to sleep since, though, so there’s that.
I can’t eat or drink anything cold for 7-10 days after chemo. I can’t breathe cold air. I’m glad it’s not December in Colorado. Oh, wait… If I go outside, I have to wear a hat and scarf around my face. I’m basically Penelope…
…except with a hat too. I can’t take anything out of the refrigerator without gloves on. On the other end of the spectrum, I also can’t have anything too hot or have my hands and feet in hot water for too long. No dairy. I have three prescriptions for anti-nausea. Just how nauseous am I going to be?
And how cold is too cold to breathe? Because the first night I laid awake all night thinking my room is too cold and where am I going to sleep. Do I have to wear a scarf to bed? I have my house at 68 and I sleep in the basement so it’s colder down here. So my first question to my oncologist, Doogie Howser’s little sister, is “At what temperature should I just not breathe?” I’ll let you know what she says.
I’m going to do a whole separate blog for things I’m not prepared for. Oh wait, I’ll just make that this blog.
I literally never think anything bad is going to happen to me. My friend and I used to walk our combined five kids up to the tennis courts adjacent to our neighborhood on Friday nights at like 9:00 and play tennis until the lights went off at 11:30 and then walk our posse home. I’m sure we were quite a sight. We had strollers, bikes, scooters, and did not live in a nice neighborhood, and I never once had a thought that anything bad could happen to us and thankfully, it didn’t.
I once left Sunshine at a truck stop when she was three months old because my car broke down and the married truckers who picked me up said it was too cold for her to go out when the tow truck picked me up. Mm-Kay. In my defense, I really have none, I thought the tow truck was bringing me right back there, so when he did a u-turn and drove past it I calmly said, “Oh, wait, I have to go back there, my baby’s there,” and he yelled at me, “You left your baby in a truck stop?!?”
I bring up that story because the nurse who was checking me in for my port procedure was surprised that I was old enough to have a daughter Sunshine’s age. Yeah, me too. She said I must have been really young. And I thought back to that truck stop story and said, “I wasn’t that young, but I was an idiot.”
And maybe everyone is when they have kids, but aren’t we all just doing the best we can?
Other people get cancer. So and so’s aunt, someone’s grandma. I don’t get cancer. My grandma had breast cancer late in life but I live in Colorado so I didn’t see it. And then my dad got it and was gone quickly. My stepdad had it and they went to live in Atlanta for radiation treatment and he’s fine. And then my sister in law gets it and beats it but I’m still far away from it, from the logistics of it.
You may or may not be surprised to know I did zero research on my port procedure. “You’re scheduled for a port.” Okey doke. Step one, get a port. I know the basics of it and what it does and why I need it. My one little wrist vein is not going to cut it for much longer, and I’m not a fan of any combination of words that include arm, needle, digging, or vein.
I’m glad to be getting it because I hear how much easier the treatments are going to be but I don’t actually know anything about it. Where exactly does it go and how does it work? Luckily the PA who’s putting it in gives me a tutorial with a book that reminds me of a kid’s book where you can touch different textures or practice tying shoes. Remember those books?
In her book is an actual port and then you turn the page and it’s a piece of fake skin that goes over it, and then it shows the port again with the tube that goes into a vein in a drawn diagram showing it goes through your neck. Wait, what? It goes where? This is where I look over to make sure Sunshine’s okay and she’s looking in her purse for a granola bar because she’s feeling a little woozy.
She came home two nights before the procedure and said, “I did some research on this port thing, and”… she listed some fun facts she found out in her intermittent research. I can’t lift anything heavy, shower for two days, do anything strenuous. Sounds like my kind of weekend. She also said her research had to be intermittent because it was making her queasy. Well, I don’t want to find out anything that’s going to make me freak out.
So in today’s episode of what I’m not prepared for, it’s the neck ache I’m feeling. I was prepared for some chest pain where they actually put it, but I can feel it when I swallow and when I roll over in bed and when I move. I’m sure it will heal but day 1 was tough.
And I’m going to call her Peggy as in …and Peggy. The Schuyler sisters. She’s not Angelica or Eliza, she’s Peggy. One because I love an alliteration. And also a reminder of how quickly life can change.
So you have cancer, how do you tell people? And by “people” I mean your children but also people because talk about a conversation stopper, and do you text or call or just post on Facebook? But what about your children who hear “cancer” and immediately think death because grandpa Charlie had cancer and was dead in three weeks. He had the bad kind of cancer. They don’t remember grandpa Carlos and Aunt Tracie beat it, they just think death.
On the way to the colonoscopy appointment I didn’t want to alarm Sunshine but I also didn’t want something to be wrong and have her group text her sisters who were too far away to do anything if it turned out to be something bad. So I told her, “If they tell you something bad or weird, you can call Aunt Sherri. Period. Don’t say anything to Moonshine or Tenderheart because they’re too far away and they’ll just worry.”
So when the doctor was telling us what it was, in between panic attacks I guess she texted my sister, “It’s bad but not terrible.” Now imagine getting that text. My sister said later she didn’t know what kind of scale she was working with.
So after my world was rocked and my colon was mostly clean, I texted Moonshine and Tenderheart and said, “All is well, I’ll have more results Monday.” Because again, they were so far away and had classes and Tenderheart was coming home the next day and Moonshine was going to a football game that weekend with her boyfriends family. And really, there’s no good way or time to bring it up. It spoils a good time.
“Um, hey, remember when I said all was well, well, technically it’s not as well as you might think.” But here we are, the day after, and I have kind of a plan in that I’m going to the cancer clinic the following Wednesday so I can’t put it off anymore and I have to tell them.
Tenderheart takes the bus from her school to downtown and I pick her up, so while waiting for that, I called Moonshine. It didn’t go well. And she didn’t appreciate my phrasing of “it’s the good cancer.” I was saying it in that it’s not pancreatic cancer like grandpa Charlie. Like good cancer that can be cured. There was some, “you lied to me”, but let’s focus on more important things like how I have a plan and we still don’t really know a lot yet.
Tenderheart was tougher because she was there in person and maybe making fun of me because I like watching “Frozen” when it’s on. I don’t seek it out but if it’s on, I’ll watch it. It’s a classic. And I didn’t know if she was going out or staying in so I just said it. And she started crying because you hear cancer and you think death. Then I said chemotherapy and that sent her over the edge and she asked if I wanted to watch “Frozen” and I really did.
The problem is I’m fine. I look the same and I feel the same as before I went into the appointment. I still have my undiagnosed side pain, but I also have the awareness that I have cancer. I have a theory that people don’t start dying of cancer until they find out they have cancer, and I believe it because now I think I can feel it in there and I’m more tired but is that mental?
The Wednesday after the cancer clinic conversations were also tough, mainly because we knew what we were up against now but Moonshine was still too far away, and she didn’t hear Stage I “let me get that out for you right here” like we were hoping. Then I went home to Tenderheart who I wouldn’t let go with us and she was upset that they didn’t know how to poke people and I had a blown vein. And also that I wouldn’t let her quit school and come home, but that’s another conversation.
This is a blip. Almost a year of my life to get this cured and move on with my life. But to be honest, it’s really hard to try and be positive all the time. And to put on a brave face and make sure everyone else isn’t freaking out. It’s hard to be the strong one all the time, but raising these kids alone, that’s what I’ve had to be. And I’ll keep doing it, but I’d better get some good drugs in the process.
Has this been the longest blog of your life? Because it was the longest week of mine. Wednesday comes and I have the first MRI at 6:30 am. Sunshine takes me and then goes and gets my sister at the airport. By the time I have my MRI then a CT scan, they’re already there even though it’s the busiest travel day of the year. Oh, is it Thanksgiving tomorrow? I have no idea, I have cancer and no turkey.
I’m getting the MRI, which I’ve never had and am not a fan. I should start a list of all the things I’m not a fan of. I’m talking about you, appendix. But the only time I’ve been in a medical setting is when I had three kids who just popped out with no problems, thank God, so I have zero experience being in a hospital for anything serious. I literally didn’t know if I wanted a warm blanket or a cold one. I could not make one decision. I ended up listening to Tom Petty’s greatest hits because I let the tech pick the music. I did, however, ask for an additional gown to put on backwards so my ass wasn’t hanging out, but that was really for everyone else.
The tech asked if they were looking for colo-rectal cancer, and I said, “Oh, yeah, I already have that.” She was shook. I guess the images were to see how far up that little life sucker was. Then the CT scan to see if it had moved to my lungs, my liver was cleared on the previous CT when they said my gallbladder was fine but apparently, the three Ls are what you have to worry about with this cancer — liver, lungs, and lymp nodes. And guess who still has pain in their right side not related to any cancer? That’s me!
I then meet up with my sister and Sunshine who is doing amazingly well. I was so proud of her. She said she felt a panic attack coming on once and she pushed that sucker down. We go and meet with a surgery tech named Alexander who wants to go into great detail about my personal life for someone I’ve just met. He gets a full history and tells me when I come back that afternoon they’ll do a digital exam. What the hell? Is that with a camera? No, it is not. I wish it was with a camera.
The nurse peaks her head in and says, “Hey, the social worker wants to meet with you because you ranked pretty high on your stress questionnaire.” Yeah, because I was just diagnosed with a totally made up cancer and I don’t know how bad it is. Wouldn’t you be stressed? What I really said was, “Thanks, that would be great.”
I then have to go and give blood. Well, if you’ve been paying attention, this is not going to be fun. I already know. I go through the whole thing, “preferably my wrist”, she goes with my hand and collapses the vein. That sounded like some real “Grey’s Anatomy” stuff because I didn’t even know it was a real thing. She went to my wrist and liquid gold, or blood, whatever. She rubbed the back of my hand and said, “Oh, that’s gonna bruise.” “You think?”
We go to lunch. Mmm, Smashburger because I’m probably never going to be able to eat red meat again. We go over questions we want to ask, I’m a complete blank. I have no idea what to ask, what I should ask, what should I already know? I’m just listening for less than Stage IV because my BFF WebMD told me everything else is curable. I literally don’t even know what the stages mean. I had to call my boss to get the day before Thanksgiving off, and I told her some completely false information on what the stages meant. So either she doesn’t know either or she thinks I’m an idiot.
We go back early for our 1:00 meeting with all the doctors because I want to be first on the list so I can go first. I need to know. This has been the most torturous almost week of my life, and I was two weeks late giving birth to Tenderheart…in the summer. Anywho, there is no list. They see about 5-8 people for these conferences and they meet with them anytime between 1 and 3 to go over the plan. Well, first, I need to know what I’m dealing with and then I need a plan.
Miraculously they see me first. Five doctors come in the tiny exam room with Sunshine and my sister. I had the biggest entourage. One guy was there alone and I wanted to loan him one of my people. I literally can’t imagine doing that alone.
First impression, the surgeon has more chest hair showing than I’d like, but I might be focusing on the wrong things. There’s the no-nonsense lady in charge of radiation with amazing boots and the oncologist who is 12 years old. She’s Doogie Howser’s younger sister. Alexander is back and one other guy who has no purpose except to block the door in case I try and run.
The surgeon says it’s Stage 3 and the protocol is 16 weeks of chemotherapy every other week, a 2 week break, then 5 weeks of radiation Monday through Friday, 6-8 weeks off, then surgery, and then in two more months another surgery. I think I blacked out. Good news, it’s not in my lungs or liver. Bad news, it is in my lymph nodes so they have to shrink it first with the chemo and radiation and then do the surgery so I don’t lose as much of my colon. In my mind that thing is like a giant snake and I could stand to lose a little of it, but not so IRL.
Thank God my sister was there to take notes because I didn’t remember a thing he said. There were so many people and a study I could be a part of, and to be perfectly honest, as everyone knows, there are some really scary words associated with cancer. Even the word “cancer” itself. Tenderheart started crying when I said chemotherapy and the sentence was, “I probably won’t even need chemotheraphy.” That was obviously before this appointment.
The one bonus if you can call it that — because I’m under 50, yes, peeps, I’m only 47, I get to do genetic testing because they don’t even do screenings for this cancer until 50. My original doctor with the cute haircut said I’d probably had a polyp for 10 years, which turned into cancer but I had no symptoms. She also said my girls need to start getting screened at 35. Let me tell you how thrilled they were to hear that.
Not as thrilled as I was at a “digital screening”. Two randoms, or the surgeon and the lady in charge of radiation, need to see how high up the life sucker is.
Side note: my cousin Cari asked if I’d named it yet. I have not, but I’m open to any names that don’t include the word “booty”. Moonshine loves to throw out inappropriate names.
So everyone leaves the room except those two, and it’s basically an exam with two perfect strangers I’ve just met, and it’s awkward, it’s all awkward, and the way I deal with awkward is to make everything 10 times more awkward. I get on the table and say, “I usually get dinner before this.” I don’t know what’s wrong with me. The radiation lady didn’t hear me and said, “What did she say?” So I said it a little louder, “I usually get dinner before this.” She said, “Oh, that’s funny.”
Here’s the takeaway, it’s curable but the next year of my life is going to be hell. Couldn’t I have just led with that? Yes, I could have, but so could all of my doctors. This Friday I’m getting a port since my one little wrist vein isn’t going to cut it for the long haul and then next Thursday I’m starting chemo. And if everything goes according to plan, and please let it go according to plan, I will be on one of my breaks when Moonshine graduates from college a year early this May. And I’ll also be alive.
How about that cliffhanger? And how about waking up from anesthesia to, “It’s bad,” especially after you know they’ve just been in your butt? Let’s face it, folks, not pleasant. And I made the mistake of looking around the room before they put me out, do you know how long that scope is? I have to be honest, there are some things I don’t want to think about and now it’s right here in my face…literally, I have pictures.
Let’s see, where were we? It’s Thursday, the doctor says it’s a mass and it’s cancer and that’s where I stopped listening because I look over and Sunshine has her head between her knees in a full-on panic attack. Here’s the scene, I’m in a hospital bed, the doctor is on my right telling me I have colo-rectal cancer, which I didn’t even know was a thing, and Sunshine is sitting in a chair to my left holding my hand with her head between her knees. Everyone rushes up to make sure SHE’s okay. Um, excuse me? I apparently have cancer. “Can I get you anything, hon?” “Do you need some juice or anything?” Um, yeah, I need an oncologist, can we get back to me?
I somehow manage to hear the rest of what the doctor says and she tells me she’s already called the surgeon, Dr. Brown (his real name), on his cell phone and he’ll be in touch with me. They’re rushing the results and will have them tomorrow. Oncologist will be in touch with you, cancer, cancer, cancer. Well, none of that sounds good at all. Then they give me all my paperwork including pics of the little life sucker and the rest of my crystal clear colon and send me on my way….
Except they can’t because my designated driver is still having a panic attack. She is pale and they’ve taken her to the bathroom to get her a wet wash cloth while they throw my clothes at me and tell me to get dressed because I’m probably driving home. Can I not have anything? I know as a parent you’re supposed to be selfless, but I’m having a moment right now. I got dressed and of course, she was fine. She calmed down and was able to drive us home, but they walked us all the way out to the car and they didn’t even do that for the woozy woman from earlier. However, they were literally the nicest people ever and even called the next day to make sure I was okay since we were both sent off pretty stunned. The nurse said, “I’ve thought of you and your daughter all night.” Come on.
I got a call on the way home from Dr. Brown’s office that he might be able to fit me in November 30th if I want to drive 45 minutes away to his other office. Da fuh? That seemed way too far away (time and distance) since we were only on the 15th and did you hear, I have cancer, I need things to go a little faster than that. I want it taken out immediately.
I got home, made an omelette, told Moonshine and Tenderheart all was well and I’d know more Monday, which wasn’t technically a lie, Moonshine, it was withholding some of the facts. However, I didn’t want to tell them over the phone at their respective colleges until I had more information and a plan. Then I called my mom and sister on a conference call. I couldn’t go through it twice and I knew my sister would keep my mom on the rails. Everyone needs to stay on the rails. I’m the only one who has permission to go off the rails.
Back to having a plan. Do I love a plan? Enter my sister. She’s a planner. She and Tracie get stuff done. By the next day, she had me an appointment at a multi-disciplinary cancer clinic for the following Wednesday (not the 30th, Dr. Brown) where I’d have scans all morning, blood work, go to lunch, and by 1:00 pm, I’d know what I have and what they’re gonna do to fix it. My sister and sister-in-law are basically superwomen.
They set all that up without even having all the pathology. Do you remember how much I love a clinic? Well, the cancer clinic had everything transferred over and were like, “We got this. See you Wednesday,” and I was like, “Mm-kay, I’ll just bring my cancerous colon.”
My sister volunteered to come, but I was like, “Nah, I got it. We’ll be fine.” This is where you should hear Ron Howard in his “Arrested Development” voice say, “They would not be fine.” By Sunday I had worked myself up so much that I was hysterical and asking her to come. All I could think was on Wednesday if they told us something really bad, worst case scenario stuff, anything other than Stage I immediate in-office removal (“Let me just get that out for you right here.”), then I’m just sitting there with “Panic Attack”, and who was going to take care of whom.
I couldn’t sleep for days. I would wake up in the night and think of all my other ailments and wonder if that was cancer, too. Sometimes I forget words, sometimes I choke on my own saliva, I haven’t had a mammogram, and can we get back to that pesky pain in my side, which is the reason I went in in the first place? Does that all mean it’s moved around? Exactly how good does my pancreas look? Where’s my appendix? What stage are we? Only below Stage IV has a good chance according to my new best friend, WebMD. If we’re Snapchat friends, there were a lot of 3am posts of my dog who was having no trouble sleeping over those few days.
To be continued…don’t worry, we’re almost there.
If you’ve read my blog before, you might remember a year and a half ago when I thought I was at rockbottom. Past Christy was so cute. You may or may not be surprised to find that it was, in fact, not rockbottom. And here I am with cancer. Spoiler alert.
I’m really torn about sharing this because one, it’s super personal and b, probably TMI, but then I’ve also had people in my life die and I really want to know how and why and what caused it. Call it morbid curiosity, call it self diagnosis because I want to know if I have what they had. Fun fact, I’m terrified of my appendix. Anything that can just burst and kill you, not a fan.
For instance, if you have pain in your gallbladder area and you go into the doctor hoping they just take out your gallbladder in an office visit, but then they tell you after an ultrasound, colonoscopy, two CT scans, and an MRI, it’s colon cancer, would knowing that help someone else? Who knows, but here we are.
Let’s start before the beginning. My oldest daughter graduated from college, went to Americorps, and moved home to work and go to grad school. My youngest daughter graduated high school and is a freshman at a college nearby (but not too close). I have a middle daughter but she’s doing exactly what she was a year and a half ago when I stopped blogging. Now you’re all caught up on the lesser important things in my life now that I have cancer. Also, in case you are just discovering I have had a blog for the past 10 years and want to see what I’ve been up to, I’ve archived all that so as not to get in the way of the good stuff coming up.
Almost exactly a year ago I started the complicated weight loss plan of eat less, move more. It’s not rocket science, it’s rocketing off the couch. I lost 60 pounds and then started having pain in my right side under my ribs. I haven’t been to the doctor since I had good insurance before I lost my good job years ago so I had to start at the beginning. Number 1, find a primary care doctor, which meant finding someone who was taking new patients and didn’t operate out of the back of a van and who would only take patients who weren’t on ADD or pain medications. I’m not, but it was weird that some doctors were that specific on which new patients they would take. I found a doctor with an odd name who could see me that week at a real office.
I went in Friday and he was very nice, maybe Slavic, and concerned-ish about my side pain. He did blood work and ordered
another co-pay an ultrasound. I went back to that place on the next Monday for the ultrasound and here’s where I tell you how much I love a clinic. I love going one place for an x-ray or blood work or an ultrasound, all of it in one place, I am a fan. Ultrasound tech, very nice, and a week later my ultrasound was clear, no in-office gallbladder removal. Maybe I could try a self-removal if my pain didn’t go away.
They referred me to a gastroenterologist, which is the worst word to text out to your kids because it takes the full line, and what in the world does it mean? I go in there the following week or the week after. No one is concerned so I’m not concerned. Maybe they’ll take out this pesky gallbladder. Oh, and if I want to get in soon-ish, I have to see a nurse practitioner, who actually charges the same “specialist” co-pay, but was fantastic. She doesn’t think it’s my gallbladder but I go all to pieces about how my dad died of pancreatic cancer and what if it’s my pancreas and then this exchange happened: “Did he just die?” “No, no, it was 10 years ago. I don’t know why I’m so emotional.” Listen, we are an emotional people as every healthcare professional I’ve encountered on my journey has discovered.
The nurse practitioner orders a CT scan and a colonoscopy because apparently my dad had polyps they found at a regular screening at 50. Keep that in mind, “age 50.” It’s all so casual. They can get me in for the CT scan the following week and we might as well do a colonoscopy. First available appointment is in a month. I took the appointment on November 15th then had to pay $35 for the prep that would be mailed to me. Thanks, US Postal Service, for what would be the longest day of colonoscopy prep ever. I’ll spare the details.
The CT scan, no big deal. They have to do contrast and the worst part of any appointment where they have to draw blood or do an IV is that my veins are super deep, which is good when you’re going up against Freddy Krueger, but bad when a medical tech is digging in your elbow bend to find somewhere to draw blood. The only place people can ever get is my wrist or my hand, neither are pleasant. And when I told the CT tech this, she may have taken it as a challenge as some people are wont to do. Like, “No, I can get it.” Guess what? She couldn’t. So after my left arm, my right arm, she went to get more band-aids and another tech who was able to get it…in my wrist where I’d told them the first time. It’s all good though, back to getting this gallbladder out, please.
They took some pics of my mid-section and then put contrast in, which literally makes you feel like you wet your pants. Like literally. I can’t even describe it well enough except that it literally felt like I had wet my pants knowing I had not. Results the following week were clear, still no one seems that concerned. In the meantime I stopped going to the gym because my side hurts all the time now. Next thing is the colonoscopy. Yay! But actually “yay” because that’s where they found my cancer. Not the cause of my side pain, mind you because that’s on the backburner now, but at least I know it’s not my pancreas (or appendix).
So we go to the colonoscopy. I have to have someone take me because I’ll thankfully be sedated and can’t drive home. I volunteer my oldest daughter because she’s all I got. Remember Sunshine? She’s so awesome. This is us pre-colonoscopy, pre-diagnosis, not a care in the world except I haven’t eaten in 2 days and all I can think of is coming home and making an omelette. She’s making a face as she’s wont to do during my selfies.
They take me back and ask a million questions and get me in that kicky gown and grippy socks, which you know I kept. They put an IV in (the wrist after digging in the hand) and ask if I want Sunshine to come back to keep me company until my procedure. I did, but she sure did not. See, she doesn’t do well in medical situations. She gets anxious and a little panicky. She was not my best choice to take to a colonoscopy, but she was my only choice, much to her chagrin. We see them walk this woman out of her procedure and she’s woozy, and so is Sunshine, so I tell her to go back to the waiting room.
They take me back, give me the sedation, and easy breezy. One minute I’m counting time on a digital clock in one room, the next minute I’m in recovery and Sunshine is sitting next to my bed. I had a moment of panic where I thought I walked out like that poor woozy woman from before, but I didn’t, they wheeled me out on the gurney. And my gastroenterologist was so nice and had the cutest haircut. That’s all I could talk about because I couldn’t wait for Sunshine to see her cute haircut. What I didn’t know is they’d already told Sunshine they found something and the doctor would be over to talk to us, so she didn’t give a crap (literally) about her haircut.
Sunshine ran to the bathroom and the doctor came over and said, “It’s bad, do you want me to tell you in front of your daughter?” Well, that is not something I could comprehend two minutes after coming out of anesthesia, so I said, “Yeah, she’ll be right back.”
Sunshine walked up and the doctor said, “We found a mass and I’ve seen enough to know it’s cancer.”
To be continued…