GREETINGS, EARTHLINGS

WELCOME! 

And sorry you’re here....because chances are, if you’re reading this, you or someone you love has just been diagnosed with cancer. It is absolutely one of the worst things to ever hear. Believe me, I’ve been there. In fact, as soon as I finished a phone call with the first doctor, a second doctor called me telling me the SAME THING. Like, I am aware, your buddy just called and frankly hearing it a second time isn’t any easier. So, the first thing I am going to tell you is this: If you have just found out you have cancer, you have every right to feel however you want. Every. Right. Not many people understand the feeling on a personal level, so it is hard for them to help you cope with the news. You are allowed to cope however is best for you. Crying, screaming, taking a walk, telling the world immediately or telling just one person, you are entitled to handle the shock any way you want. From there, you learn how to tell the world (because I recommend doing that, you never know where you can find support). That is the beginning in the privilege we are going to call “The Cancer Card”, which basically means you are in control and everyone plays by your rules. Right now, your main goal is to process the information that has just been broken to you. I know what you're thinking:

To put it simply,

CANCER REALLY SUCKS.

​Also, I am not going to sugarcoat anything about this whole process because there is literally nothing sweet about it. I don’t mean to be like that, but this is the reality of having cancer and you deserve to know what you are about to experience so you can best prepare for it. This is to help you, not to scare you off.

Speaking of scary, the first thing I am going to tell you is that your friend, good ol’ Google, just became your worst enemy.
Google:
-Isn’t always right
-Has scary images
-Always points out the worst case scenario
-Will basically tell you you have 12 minutes to live
-Also has WebMD which is a no go.

I REPEAT, A NO GO.

Sorry, Google, but you really ain't welcome here.

Seriously, don’t do it. Don’t you dare. I know it is everyone’s first instinct because it was mine as well, but I resisted and it has served me well today. You already have enough anxiety and confusion about what is happening to you, you do NOT need the vast wasteland that is the internet to freak you out even more.

There is a 90% chance that you will remember the day you were diagnosed with cancer like no other. When I got diagnosed over the phone, I was standing in my living room right next to the stairs, had messy hair, was barefoot and rocking a scraggly white wrinkled Mickey Mouse shirt I had snatched from Ross and was wearing black basketball shorts that definitely hugged a little too tight. I know, I know, I'm a total fashion icon. It was about 1:30 in the afternoon and as soon as the news had registered in my brain I stepped outside and proceeded to bawl my eyes out against my truck for about thirty minutes. That scene replays in my head every single day of my life. In other words, it’s going to stick like a magnet, mainly because the adrenaline of such news is causing you to retain every single little detail.

Do you need that kind of hassle rattling your conscience? Helllll no. So, don’t do what I did, and cry and then proceed to take an hour nap. I really didn’t know what else to do. In fact, I recommend you stay up and try to keep yourself occupied with other things to not think about it as much. If you knock out with those thoughts running around your cranium at a million miles an hour, all it’s gonna do is make you overthink the situation you are already freaking out about as well as probably dream about it because that’s what our lovely mind does to us!!! Try to calm yourself down, concentrate on other things and let those diagnosis thoughts settle so they don’t stick as hard. I know, I know, it’s much easier said than done, but I done goofed so if I can save someone else from making the same mistakes, mission accomplished. In fact, that is the purpose of this blog, so no one else makes the errors I did. 

So, what happens now? 

​Well.....

I know, I'm like, super cute. Stop drooling over this Post-Escape-Room, Panic-Induced face. 

But really, Yes, it’s a lot. And that photo is exactly how I felt during all of it. It is a stressful (like the rest of this journey isn’t stressful? lol) period of time because so many things have to happen and so many hoops have to be jumped through before a treatment plan can be created and executed. For example, here was my journey pre treatment:

This was over a thirty day period. As you can see, it is a DOOZY. In fact, it took about me about two hours to search for all of my appointments online and on paper just to ensure I had everything. Of course, not everyone is going to have to do the same scans or meet with a surgeon, and there are multiple ways that a biopsy can be done; it all depends on the nature of the cancer. However, I am going to do my best to cover all bases regarding cancer diagnosis and staging.

HERE WE GO.

​Blood work
I’m starting with blood work because this is just the beginning. You will have so much blood drawn from you, you WILL believe you will have none left. Fair warning, it does get harder as you go. For preliminary testing, however, they will take a lot of blood from you and test nearly every level under the sun, especially any level that can correlate with your cancer. I recommend asking your oncologist what tests you should pay attention to and what they mean so you can look on your own when you get tested in the future (and if you have access to your results, I believe most hospitals can post them online if you have an account). These most definitely will include White Blood Cells, Red Blood Cells, Platelets, and Neutrophils. Learn what they mean, what’s normal for you and when you should be concerned.

Also, if you happen to be ultra terrified of needles and being poked with one, please let the phlebotomist know. They will do all they can to help make you feel comfortable. It’s for both your safety and theirs too, so don’t be silent if you’re scared. You’re already experiencing hell; be your own advocate and make hell geared towards what’s best for you.

X Ray
Most people have had an X Ray before, but it’s also another way to see your tumor; in fact, this is how my tumor was discovered. Fairly simple and quick, this is the easiest of all the scans.

Pro Tip: When your doctor shows you the scans, ask to take photos of them! They’re nice to have in your record and it is really helpful to have when you put your journey in order so you can make sense of it. Also, your friends and family will think it is really cool, PLUS it’s an opportunity for you to educate them!

(omg, my bones? on the internet? so scandalous.)

Bone Scan
These are not too common, but still worth writing about it. Bone scans look for tumors in, well, the bones! Either for the origin of a cancer, like osteosarcoma, or for metastasis of other cancers that had spread to the bones. It involves contrast, so dye will be injected into the bloodstream (warning: It’s cold!) and left for a couple of hours so it can “clump” around foreign objects in the body. It takes about two hours, but the scan is not “closed” so I suggest bringing someone along to talk to while it happens!

CT Scan

A CT Scan is similar to an MRI but special in its own, sort of lame way. It has a “ring” that takes images in 2D splices and forms them into 3D products. It is mainly used to scan for tumors it the pelvic, abdomen and chest region. It is usually done with contrast as well, except this time the dye is super warm and basically makes you feel like you’re peeing yourself when in reality you’re not…..I hope.

MRI
Probably the hardest of all the scans, and MRI is a long tube that takes high quality images from all different directions to give a clear picture of what exactly is going on in your body. Most people struggle with this one the most because of the small chamber; people who fear enclosed spaces generally freak out and have to try to sleep or even be sedated to complete the scan. It takes anywhere from thirty minutes to multiple hours, and makes a lot of loud, jarring noises throughout the process. Sometimes dye is also used for this scan. The images are amazing, but it definitely takes a lot to get them.

PET Scan
Similar to the CT scan and MRI, a PET scan can detect other harmful cells and tissues in the body that may not be picked up by the other two scans. It involves being injected with glucose that has a little bit of radioactive material, so I don’t suggest flying around that time. Also, if you grow a third eye, that may be from the radioactivity (and, like, that’s pretty cool. I’d be jealous).

Biopsy
Biopsies are used to take a sample of the mass to correctly and confidently identify what cancer is growing in the affected area. There are basically two types of biopsies: invasive and non invasive.

A non invasive biopsy consists of a needle to the tumor, wherever it may be. The needle collects the small sample and no major surgical procedures need to be done. Anesthesia is given, not enough to knock a person out, but to send them into a “twilight” while the biopsy is done. Non invasive biopsies usually take a couple hours: most of the time is for preparation.

An invasive biopsy is a surgery to take either samples of the tumor or to remove the tumor completely. It is usually done in cases where the tumor is in hard to reach places. Anesthesia is used to completely knock out the patient and operation and recovery time depend on the nature of the surgery.

Biopsy results usually take 1-2 weeks to be studied and processed. When the results are in, you will be contacted by either your surgeon or oncologist to meet and discuss what the next steps are. Once all the needed scans, blood work, and biopsy information come back, a treatment plan can be formulated and soon after executed, because with cancer, TIME IS OF THE ESSENCE.

(me, loopy, confused, post-biopsy)

​By this point, if you haven’t already, you will be meeting with your oncologist (and surgeon, if applicable) and most likely a social worker as well. The appointment(s) will discuss your situation, treatment plan, as well as the risks and cautious steps you will need to take during treatment to ensure the best results. You usually have at least two appointments with your doctor(s) before starting; whether you meet your oncologist, surgeon, or both, here’s a few tips to take before heading into the room:

• Ask questions! If you followed my advice from earlier and chose not to seek help from the internet, you will know virtually nothing! And I know that’s scary but it’s ALWAYS better to seek information from a professional. Now is the time to get answers to all those thoughts rattling your brain and find some peace in the situation. Just don’t ask a million questions at once: chances are if you ask one question, your doctor will give you enough information to cover two or three other questions as well as steer the conversation in the right direction so you can keep asking the RIGHT questions.
• Take notes! If you’re asking endless amounts of questions, you’re going to get an endless amount of answers! Write them down, bring a computer and type them up, or jot them down on the notepad in your smartphone! You will get plenty of information and I guarantee you will forget at least half of it by the time you leave the doctor’s office. It may be a little more time consuming but you can nail every detail you need to know.

OR…

• Ask to record! If you ask permission (and 99% of the time they will say yes), you can use the voice memos on your phone to voice record the entire appointment. That way, you can replay on your own time and really make sense of what is happening. Just make sure your phone is in a position where everyone’s voices can be heard clearly and loudly!

By now, you should have your treatment schedule planned out for you, most likely on a week to week basis. It will describe when you receive chemo(s), surgery if needed, as well as breaks or anything else your oncologist deems important. They will give you information sheets on the chemotherapy drugs and other medications you will be taking (if they don’t, ask for it!!!), and they will tell you:

• There are MANY possible side effects from chemotherapy drugs.
• Some side effects are very serious but only apply to people with certain health issues; ask your oncologist what symptoms they believe you should be concerned about.
• Know that modern medicine has a solution to nearly every side effect you have, all you need to do is ask for it when you need it.
• Certain side effects suck more than others. Most side effects suck in general. Don’t let it scare you.
• MOST SIDE EFFECTS ARE TEMPORARY. THIS WILL NOT BE FOREVER.

​I put that last statement in bold because it is a nice reminder that this is just a phase in your life. It sucks and it will change your life forever, but this is the new normal only for a while. Coming from someone who has made it through chemo and surgery and is on the other side, I had to constantly remind myself that this is not forever.

Now, I understand that within a short amount of time, you have received a bombshell of a diagnosis, a LOT of information about your new detour in life, and within a week or two, you will be starting the battle of a lifetime. After my appointment with my oncologist, I had three days of my “normal” life left before I buckled down for one hell of a ride. I was torn; half of me wanted to just lay in bed and sleep, and the other half wanted the complete opposite. Whatever time you have left before you start chemotherapy, TAKE ADVANTAGE OF. Go do something fun with friends and family! You deserve to have some fun before you enter through the doors of hell the hospital.

THOSE SUPPORTING CANCER PATIENTS: If your loved one doesn’t want to go out and have fun, even after gentle persuasion, bring the fun to them! Sometimes it’s hard for them to get around depending on their cancer, or they’re overwhelmed and going out in general may be a little difficult right now. Bring movies, games, food, and plenty of jokes and gossip to cheer them up. I know you have to go a little out of your way, but it will impact your cancer patient more than you could ever fathom. They will never forget it, I will bet my entire life savings (like, $12.57) on it.

My family decided to have an “open house”-turned-party the day before I started chemotherapy and it was an absolute blast. We played music, danced, had WAY too much delicious food, and I got to talk to so many people who wished me luck and gave me so much love and support. In fact, we came up with a hashtag for everyone to post photos with on social media so I could easily find them and look at them when I was feeling down or having a rough day. I continued to use it on my posts on social media, and even today I can look through all of them and see just how far I have come. Not necessarily a tip, but just a fun suggestion.

Now is also the time to, if it is something you’re thinking about, reach out to support groups and organizations. If there are any groups in your hospital or in the area that apply to you, consider attending one! They are people just like you who understand how you’re feeling both physically and emotionally and can support you any way you need it. If that’s hard or chemo just knocks you down too hard, I also recommend social media. Yeah yeah yeah, social media gets a bad rep, but when you’re not always able to just go outside and talk to people, it is a GREAT way to make new connections and also receive support. Scrolling through hashtags or search key words can easily help you connect with other people in similar situations and receive comfort and support that way. People reach out to me all the time and I am more than happy to support them however they need. It’s where warriors become friends!

I don’t mean to come off negative, but I will be blunt: there’s a really good chance that your life will not be the same after you’re done beating cancer. You will be a new person with new experiences and the old version of you stays behind in your days before your battle, or even before you knew you had cancer. Now is the time to live it up and end this chapter of your life on a good note and feeling like the best version of yourself. However way you want to spend it is in your control, but my wish is that you make it memorable. I am really sorry you have to go through this, but I went through it too and I am so glad I made the most of it before I started chemo. We have to say our goodbyes to our lives as we know it, but at least we have the ability to make it special. We’re like iPhones; it’s time to update to better, healthier versions of ourselves.

​

FIRST DAY

Your First Day

So, you wake up, and realize today is THE DAY. The day you begin the toughest battle you will ever endure-against yourself. Today, like a few other days along this journey, will forever resonate with you, and there’s a pretty good chance you’re scared out of your mind. That’s okay. You will have anxiety. That’s okay. Today could be the very worst of it because you’re unprepared, your body doesn’t know what’s about to hit it and there will be so much happening. THAT’S OKAY. The reason you’re reading this after all is because I, the omnipotent twenty year old with a shaved head and bum leg, have agreed to take my experience along with others’ experiences to formulate this survival guide that best helps you when you need it, like today. (Psssst: Guess what? I love you. You’re in good hands.)

Before you leave to the hospital, whether you’re going to the outpatient center for a few hours or inpatient for a few days, there are some things you should pack for your first day:

·      Emla Cream. I doubt you already have this (if you do, woah, go you), but ask for it once you’re situated. It is a cream that contains lidocaine that helps numb the skin. It helps with the pain of port accessing (what? I’ll explain in a bit) or for IV insertions. Put a generous amount on the skin area that is about to be poked, wait 20-30 minutes, and you should have a fairly painless experience.

·      Extra Clothes: If you’re staying in the hospital for a few days, bring some extra clothing. If you’re okay with just the hospital gown then knock yourself out, but I prefer a style that doesn’t make me look like a square. It’ll help you feel fresher at times when you may not be able to shower. Plus, they’re comfy.

·      Electronics and chargers: No matter where you are, you’re going to get bored, want to find a distraction from how sick you feel, and you’ll want your phone/tablet/computer/etc. Hospitals have WiFi and nurses and other patients have great Netflix suggestions and game recommendations tailored to what you like. Also, watch Criminal Minds and The Good Place on Netflix. You can thank me later.

·      Blanket(s): No matter the weather, always play it safe and bring a blanket or two. Hospital beds/cover/sheets are not super comfortable. Sorry. Plus, it’s a piece of home you can easily bring with you!

·      Beanies: Chances are chemotherapy is gonna leave you bald for a while, and your head WILL get cold. Start your stereotypical beanie collection and come with a warm head and in STYLE.

·      Flipflops/Slippers: Yes, tennis shoes can be ideal too, but you’re gonna be in hospital socks and do you really want to take the time to put on tennis shoes to get up to go to the bathroom or to roam around? I sure as hell didn’t. Get something easy to slip on and save yourself the trouble. Okay? Okay.

·      Headphones: For your electronics, basically. It’s just respectful to other patients around you who may want some peace and quiet during their fights.

·      Puzzles/Puzzlebooks: I am willing to bet my prosthetic that someone is going to give you either a coloring book or a book full of crosswords, Sudokus, word searches, and other activities. USE THEM. There will be times where staring at a screen is going to hurt your eyes and it can be quite relaxing, and you can go at your own pace. My one recommendation is to do the coloring sheets that are not the super complex shapes and patterns. You will get frustrated. You will lose interest. You will be stressed out, which happens to contradict the purpose of a the coloring book.

·      Water Bottle/Hydroflask: Nurses will always provide you with cups of water and ice, so bring something to keep it cool. One with straws are perfect for when you’re laying on your side in your bed so you don’t spill all over yourself. Plus, it means the nurses can save the plastic cups they’re gonna give you. You can be a cancer patient and still be environmentally conscious, honey. Save Mother Nature.

·      Snacks: Visitors will come and go and you will be busy or distracted and soon realize you’re hungry. And if you’re inpatient, you will get sick of the hospital food. I repeat: YOU WILL GET SICK OF THE HOSPITAL FOOD.

So, you have your necessities, your keys, your wallet, anything else you feel like you want there, and you head to the hospital even though that’s the last place you want to go. After checking in, it’s going to be a whirlwind, and there are multiple routes a patient could take before they start their first chemo. To start, I'm going to list HOW you can receive chemotherapy drugs. 

There are three ways a patient can receive chemotherapy and other medicines, depending on their route of treatment. The one everyone knows is a standard peripheral IV, which is your typical IV that gets stuck somewhere in your hand or arm, usually. This is done for Outpatient chemo (huh? I’ll explain later I PROMISE) a LOT more often than inpatient. Doesn’t need any maintenance outside of the hospital but can suck after a while because the drugs can be harsh on your veins.

Another way to receive chemo is through a PICC Line. It looks like this:

PICC stands for Peripherally Inserted Central Catheter, so think of it as an IV that travels allllll the way to the central line above your heart. It’s a procedure that can be done bedside so it can be used immediately after insertion. Using an Ultrasound scan, it is threaded in your upper arm all the way to your chest and rests just above the heart. You can ask for numbing cream for the procedure and Ativan or Versed to stay calm, because you WILL feel it moving through your body and it WILL feel weird. If not in use, it needs to be flushed at least once a day and the bandaging has to be changed and cleaned once a week. It cannot get wet AT ALL so you have to be careful when washing up or just being out and about. I had a PICC line in the beginning of treatment and meh, I didn’t really like it, but for certain people it is AMAZING. I’ve known former cancer patients who had their PICC line for over a year and absolutely loved it.

The third most common way to receive chemo is known as a Port. It looks like this:

Totally different from the previous two, a port is completely under the skin and requires a full procedure to implant and take out. It is usually somewhere among the chest region, and it is very superficial and can range in sizes. It can be used right away as well but usually doctors want patients to recover from surgery before they start using it. For chemo, a small needle is inserted into the port’s landing, known as “accessing” and the tube that sticks out is where medicines go. At the end of treatment, the needle is removed, so showering and getting it wet is no worry. Emla cream is really good for numbing the skin before access, usually doing it 30 minutes before means no pain from a needle stick. If not in use, it needs to be accessed and maintenance once a month. I received a port after my PICC line (and at this point in time of writing this still currently have it) and I love it. Both PICC lines and ports can also be used for various medicines and can be used in scans and testing if contrast or blood are needed.

Now, this is where a divide comes: Outpatient Chemotherapy and Inpatient Chemotherapy. I’m going to try my best to put in all the information while not making it ultra confusing for ya. Look for stuff that you know is important to your journey and skip over info that doesn’t apply to you (unless you REALLY wanna know it all, then good for you Einstein), and if you’re unsure which way you’re going then read it all and then ask your oncologist so you can come back and refocus on what you truly need to understand. Alright, bear with me, this could very well get very ugly. If I don’t make it past this part, tell my mother I love her.