Cancer: So does it hurt or what?

Well can you guess what this post is about? Its crazy to think that a little over 3 years ago I was diagnosed with this terminal illness that was going to probably kill me. Lets all have an honest moment, probably will kill me eventually- if that doesn't get me first the zombie apocalypse will. But on a serious note a few years ago I was diagnosed with Stage 4 Non Hodgkins Lymphoma. I could use the proper long official meaning but no one really cares about that because it doesn't make sense to the normal human being. So before I get going on the important stuff, here's the quickie version of how I found out I got cancer... 

Once upon a time I was 21 and a sophomore playing basketball at BYU. One day I noticed large lumps in my neck and face. I was sick all the time and my playing time decreased because I was so tired. After a month of medrol packs and z packs and other antibiotics we decided to do a CT scan because the lumps were getting massive. We found roughly 9 masses just in my neck and face. The next day we did an emergency biopsy and discovered I had stage 3 Hodgkins Lymphoma. Now no offense to the Utah Valley hospital (I was diagnosed wrong) but the second we found out we booked it up to The Huntsman Cancer Institute. A month later after more tests and biopsies I was re-diagnosed with stage 4 NON Hodgkin's Lymphoma. It took a panel of doctors to diagnose me from around nation. Why? Because the specific kind **Remember the proper long official meaning? So that portion of my diagnoses** that I had didn't match me. The kind of cancer I have has an average age of 60-70 years. Most people die from it within the first 7-10 years of being diagnosed. And once you'e a stage 4 it usually isn't curable. For those new to the cancer world there's 4 stages. Stage 4 is the worst stage and basically means its in your bones, blood, all your organs, and lymph system, and just everywhere. So when I was diagnosed I was 21 and in the prime of my life and it was so strange I had this specific cancer. What wasn't strange was that my Grandma Garrick and her dad my Great Grandpa Kenner both passed away from this exact cancer. So is it genetic? Probably. Anyways I started chemo and did a couple rounds of that, did some chemo in the spine, had some touch up surgeries, and BAM! Flash forward 3 years and I have long hair, I have eyebrows and eyelashes, and I'm not even on any medications.

So there's the quickie version of my cancer story. But now here's a little more in detail about the main question I get asked, Does it hurt? I get asked almost every time someone finds out I have cancer if it hurts or not. To answer your question, yes and no. To really have my answer make sense I'm now going to step by step take you through a normal day at chemo and some other cancer perks...

Accessing the Port, Doesn't Hurt

So when you do chemo most patients get a portacath. Some get a stint in their hand, others get a portacath in their chest. I named my port Pasiley. No Paisley doesn't make cancer hurt. So while driving up to chemo I would also rub lidocaine on Paisley so when they accessed her it wouldn't hurt. Once I arrive at chemo they access Paisley, basically like setting up an IV but they shoot the needle into my port, then they draw blood. Then they clean Paisley out with some saline, then I walk over to the infusion room. Once there I get two wristbands one that says ALLERGY and on that says my name on it. Lastly while waiting to go back a nice lady brings a cart around with free beanies, treats, and snacks. Naturally my family because we love food always hold the poor lady up because everyone wants 4 of everything. The best part is I always got a free beanie at this point in my long day. Simple right? Well the easiest part is over.

Chemo, Hurts

This is the part that people get confused. The actual chemo doesn't hurt physically. Its not like someones beating it in through your port so it hurts. It hurts in a different way. When I did chemo I always like to be in a room with a bed. That way I could just lay there and I could have more visitors back with me. So people don't really understand what you do at chemo. Basically all you do is sit there or lay there. Thats it. Your only job is to keep breathing and try not to throw up. So once I was in my bed they would hook up the first two bags and they would drop in. This took an hour or two depending on how I felt. Some times especially at first I would get really sick during these bags and they would have to drip a bag of water, shoot me up with benedryl, then start all over and drip it slower. FYI there's poison and bad things in chemo so you have weird reactions. So after the clear bags come the manual injections. I always did 6 of these. Now these injections... there are the clear ones, easy. Didn't notice them and they weren't hard. Next were the red ones. The red injection is what makes you sick, lose your hair, and kills everything. Side note, why are these manually? Well if injected too fast you'll die. So the nurse sits with a stop watch and times herself as she injects it so it doesn't go too fast or too slow, that way you don't die. So this red injection I started calling Satan's Punch because it literally makes you want to die. Not to mention it completely burns going down. I remember one day looking around at all the old people, yes it was me the 21 yr old and fifteen 75 yr olds, and they all only had one injection of Satan's Punch. I had three. Then my doctor explained to me they nearly doubled up my chemo dosages because I was so strong physically and so young my body could handle it. Go me... So after Satan's Punch the hard part is over. The next 3 hours I usually sit while the last 2-3 bags drop and I try to sleep this part off. So the actually action of chemo going in doesn't hurt. Its just like having an IV drop but there's chemo in it dripping in. Chemo hurts because it kills everything inside you. Ya you don't feel it killing everything but you see it as your hair falls out or as your skin gets pale. It also hurts because it makes you puke and that's never a fun feeling. So chemo isn't terrible but yes it has weird side effects that hurt. 

Losing your Hair, Hurts

In the movies I've seen about cancer they leave out this part. Its not like you get cancer then the next day after chemo your hair falls out. Its a process that takes about 2-3 weeks sometimes shorter, sometimes longer. For me it took 2 weeks. In order to lose your hair every single hair follicle has to die. In order for this to happen you have to experience a very painful headache. Its amazing because you go to chemo and a few days later you have a bad headache. It feels like your head is under some kind of pressure. Just as you think it isn't going to go away you wake up and its gone. Now when this day happened I remember the doctor telling me when your head stops hurting your hair will fall out. Sure enough that morning as I was drying my hair huge chunks of hair came falling out onto the ground. If you knew me prior to chemo you'd know I used to have hair almost to my waist. When this happened I cut my hair to my shoulders because the doctors said it would help it not be as painful as it was dying. So that night between my teammates and my brother we pulled out my hair and shaved my head. I still have a bread of my original hair actually in a scrapbook at the Gypsy Lair.So not to get confused, when your actually starts falling out it doesn't hurt. Like at all. What hurts is the week before as your hair follicles are dying and your head is throbbing. 

Bone Marrow Biopsies and Spinal Taps, HURT

So these two things I got lucky enough and didn't have to have very many, but good Lord they hurt most out of everything! So bone marrow biopsies. You lay down and they pull down your pants and start giving you shots of numbing stuff. This hurts so bad. I was gripping the sides of the table dripping sweat and biting the pillow. So they do a handful of these numbing shots that kill. Then they stick this HUGE needle in your hip bone and suck out your bone marrow. So this feeling is just awkward and uncomfortable. You can actually feel in inside of the bone marrow leaving your body and its so weird! The best part is when I got my first one done the nurse doing it was probably 5'4" and needed a stool to see over me enough to do it. She had to actually twist and shove and do all kinds of weird things to get the needle in. Being able to hear it go into my hip bone and all that didn't help the cause. So after all that they get this tiny little sample out, well it wasn't good enough. So they had to do it all over again. Oh the struggle of being me. So bone marrow biopsies. So painful and if you can avoid them do so at all costs. Now the spinal tap. So this doesn't hurt but its uncomfortable and well, I passed out during mine. Let me break it down, you curl up in a ball and they put a needle between your vertebrae and shoot chemo all up in your spinal cord. So as they're doing this its just uncomfortable and you feel this pressure back there. So I remember during mine I felt this sudden rush and literally saw this bright light. No I wasn't dying, I just fainted. So what was the bright light? No idea but it was bright and white then dark and I woke up holding my Mom's hand. As mentioned earlier, if you acn avoid bone marrow biopsies and spinal taps at all costs do so. I'd rather offer my pinky finger as an offering than do either one of those again.

So the big question, does cancer hurt? Well yes. At times it hurts psychically, it hurts just as much emotionally and mentally and every other way possible. But is it the end of the world? No. Maybe I have too much of an optimistic look on it all. At the end of the day though that little trial and bump in the road really opened up my eyes. I basically had laser hair removal for a year, I was bald, I got lots of blankets, I didn't have to go to school, and I met a lot of great people. So cancer... Some people don't know how to really approach me about it. Just ask me. I have no problem talking about it! If anything its one of the few things in the world I actually understand so its easy to talk about. But if you can avoid cancer, then do it. That way you wont need bone marrow biopsies, and you won't faint and make a fool of yourself, and you don't have to move back in with your parents for a few years. Anyways, there's my cancer story in a nut shell. If you want the full story shoot me a text or go check out my cancer blog alexiskaufusi.blogspot.com. I hope you all enjoyed your Mother's day! Mine was quite lovely talking to Elder Kaufusi who comes home in LESS THAN A MONTH. Anyways... Well have a good rest of your week and happy Hump Day! 

Alexis