- Build a routine and stick to it. This means, when you wake up in the morning. Be up. Open your blinds, order breakfast, blog, journal, etc. but do not stay in bed. Staying in bed all day is the WORST thing you could do. My Psychiatrist here at the hospital explained to me that there was a study conducted on a large group of Marines. Strong, 100% healthy and very physically capable men and women. They were placed into a hospital bed for only 2 weeks. Used bed pans so literally NEVER got out of bed and they all ended up very sick not only mentally but physically as well. Human’s were not made to stay in bed day after day and so getting up and trying to do as much as you can during your time in the hospital is key.
- Walk. Once my Neutrophils drop to zero (the white blood cells that are your immune system) I will be stuck behind a set of double doors in a special part of the hospital. This is because my risk of infection is so great at this time I really can’t be exposed to anything or I will get sick and it will extend my time here in the hospital. BUT they say walk. Even when you don’t feel like it, go for a few loops a day. This will not only help me physically but mentally as well.
- Eat. I know – so weird that they tell me this but every single person has mentioned it. Once I start to feel more sick with the chemo I won’t want to eat. But mind over matter. You HAVE TO EAT so that your body doesn’t get too weak to not only fight off cancer but to ultimately survive chemo. Specifically protein based foods.
- Gargle with salt and baking soda after every meal and before bed. I guess chemo, especially the one I’m on, is known to give mouth sores. From how people have explained them they are literally sores in your mouth that can become so painful it will hurt to eat. Because of this, you are supposed to neutralize what’s in your mouth with a salt and baking soda gargle. This tastes about as disgusting as it sounds. Shocker. But again, mind over matter. It’s not forever. Just do it.
- Shower. Also another weird thing that people have told me but it has come out of everyone’s mouth. Hygiene is key here. To decrease your risk of infection and to get you up and moving they want you to shower every single day, including washing your hair. Weird adjustment because before this you’re told to only wash your hair a few times a week. I know, sounds like no big deal. But showering is actually very hard when you’re hooked up to continual IV fluids and have a PIC line. I have to get my PIC line wrapped and tapped before every shower. Because of the location, it’s hard to wash my hair or even use that arm. But again, it’s not permanent, just temporary so just do it.
What a whirlwind the past four days have been. I figured so much has happened I would break it out and give you all a play by play on all the crazy herein if you’re interested! This is a long one but I tried my best to keep everyone filled in as much as possible! Love ya’ll! Wednesday, July 29, 2020 – Egg Retrieval Surgery Day I woke up before the sun and my Dad picked me up around 6:30 am so we could hit my appointment at the BIC (to get pumped full of platelets) before my surgery. I needed to get those suckers above 75,000 (normal is 150,000 to 450,000). On average the Dr.’s are trying to keep my platelets around 30,000 due to my eye hemorrhages and so we were hoping one bag of platelets would get me to my desired 75,000. I was pumped up with a bag of platelets (the yellow pee looking things) and I ended up at 73,000 (LOL OF COURSE). Luckily, they deemed that “close enough” and I didn’t have to sit through another bag of platelets. SHOUT OUT. My Dad then drove me down to Colorado Center for Reproductive Medicine (CCRM) and we were able to pull into a boujee garage to park. I guess before they cut things out of you they try to treat you special or something HAHAH. The nurse hooked me up to an IV, I signed a bunch of papers saying they had to the right to do whatever they were going to do to me (I’m sure they were more specified directions I just didn’t read them haha whoops) and we were off. The anesthesiologist shot me up with a shot of something before they wheeled me to the surgery room, I remember getting onto another table in the surgery room and then I was out. Next thing I knew I woke back up in my room with my Dad, I was sippin’ some bangin’ Apple Juice living my best life. And guess what… NO TEARS. I even warned the anesthesialogist I was going to cry because I have always woken up sobbing after anesthesia, but I guess egg retreival is nothing compared to cancer so I mean like bring it…? Then that was literally it, I walked out of there with my Dad (not even in a wheel chair which I am very proud of because most women were in a wheel chair after). Turns out they were able to retrieve 35 eggs… and 31 of those were mature and usable. (They said on average they extract only 10-15 per women, per swoop). So I’m like uhhhhh what’s the play here? 35 Kayla’s? Sounds like the WORST IDEA possible but I guess also this was my only attempt at this egg thing so they went out with a bang which I am appreciative of… until the pain hit that night. So before your surgery they tell you that you’ll have some “light cramping” the night after your surgery (keep in mind a male Dr. told me this cause he 100% knows what light cramping feels like in a uterus/ovaries? hahahah). So I was like okay cool, cool, cool. I can do this. By the time night rolled around I was absolutely wrecked. Trying to sit on a toilet to pee was one of the most painful things ever hahah I ripped the towel rack off the wall trying to lower myself down HAHAHA. Poor Aaron. We called the night time nurse at CCRM and she was like “oh that’s normal, especially if they took out 35 eggs. Each month you have cramping (some more severe than others) but you are only dropping one egg… I technically dropped 35… so do the math that way.” Oh cool, cool, cool. Maybe they should give a little more of a PSA than “light cramping” because I was blind sided but also I was blessed with the ability to produce the 35 eggs they were able to extract so I was like, “okay Kayla, just deal with it. It’s fine.” Thursday, July 30, 2020 – Check-In Day for Inpatient Chemo What a surreal feeling I felt that morning. Waking up knowing you’re about to imbark on a month stent in the hospital is the weirdest feeling… I have no words to explain the emotions pumping through me that morning specifically but fear, nerves, excitement, anxiety, peace, calmness, worry etc. are just a few of the 198227 emotions that I can think of. It was weird, like I thought I would be more freaked out than I was. But I was also excited and at peace as well. Excited to have the opportunity to fight this diagnosis. At peace knowing this is a curable disease and that I can/will get better once this is all said and done. And blessed that I was given this opportunity to help anyone who is going through something difficult and random in their life. So many people have said to me, “I’m so sorry this is happening to you.” And I’m honestly like why? It’s a huge bummer but it’s not a death sentence. They didn’t tell me I have 2 months to live, they believe I will 100% get better. Yeah, it’s a minor inconvenience but I’ve taken it as a blessing which may or may not sound weird to most of you. I’m blessed with a curable diagnosis. I’m blessed to have the friends and family supporting me through this. I feel very blessed. Once I got up and going I started running around getting things packed and wanted to take “one last shower” in my own shower before the hospital. Well… I didn’t think things through. I’m the type of person who takes showers so hot I’m surprised my skin hasn’t burned off yet. I lost some of my red blood cells during the egg retreival (which is normal) but with low red blood cells and a steaming hot shower it was a perfect storm. I started to feel like my body was giving out and my arms got tingly, I yelled for Aaron, he helped me out of the shower and I blacked hahah. Not the fun “blacked” you kids are doing with your vodka sodas, but the kind where my entire body went limp and I fell asleep. I guess I was out for about 20 seconds, Aaron laid me down on the floor (another blessing because I didn’t hit my head with my low level of platelets) and the poor guy started to call 911. I was breathing and had a pulse (shout out to his Marine training) but I wasn’t opening my eyes or talking – first time for everything. I opened my eyes after about 20 seconds but wasn’t responding to his questions, looked at him and then I guess my eyes rolled back in my head for another 20 seconds of non-responsiveness. Again, I don’t remember any of this but once I came to I was pissed Aaron wouldn’t let me finish my shower hahahahahah. For those of you who don’t know Aaron, he’s more than a Saint if that’s even possible. The ambulance showed up, my blood pressure was a little low (probably from the hot shower) but I was responsive and fine. The firefighters/paramedics that showed up had straight gas masks on. I was like, ”oh don’t worry, I don’t have COVID just cancer hahah.“ I think I thought it was funnier than they did. They said I should probably still go to the hospital to just get things checked out so off to the ER we went. Due to COVID it was decided it would be best for Aaron to just drive me. I just had to sign more papers basically saying I wouldn’t sue the firefighters/paramedics if I died in Aaron’s truck (no pressure hahah again, poor buddy). It wouldn’t be Kayla fashion to show up at check in for my inpatient chemo stay without a bang. I mean come on. Trying to keep the Dr.’s on their toes. Make sure they know what they’re doing. How’s that CU education treating you kid – better be 10/10 if you’re dealing with a Blick hahaha. They ran a bunch of scans on my abdomen to ensure I wasn’t internally bleeding from the surgery as well as my brain to make sure that my brain wasn’t bleeding with my low platelet levels. Good news – all good. I just literally took too hot of a shower HAHAHA WHOOPS. Anyways, we basically had to wait it out in the ER for my room to be ready on my floor rather than from the comfort of my home. While we were in ER a women came in screaming bloody murder about how she’s not a drug addict and that the Dr.’s are all wrong and she was freaking out. My eyes bugged out of my head and I looked at Aaron and was like, “uh what if she comes in here for my medicines.” HAHAHAHA. The innocence of my life. I guess Tylenol isn’t what drug addicts go for. Go figure. Good news – she never came into my room and Aaron didn’t have to fight off a potential drug addict for my Tylenol. Shout out. So glad he had combat Afghanistan training in case it turned into a full blown combat zone. Once I got to my room, I was originally supposed to start chemo, but because of my “hectic day” they actually just wanted to monitor me, come push on my tummy a lot and make sure I was stable enough to get shot up with chemo the following day. I realized you really don’t sleep while you’re in the hospital. Everyone wants to talk to you, take vitals, steal your blood and talk about life. It’s like a super cool sleepover but like also you’re in the hospital and they steal your blood every few hours so there’s that haha. I think it may have been a harder first night for Aaron than me (although he would never admit it). Going home to an empty apartment without a loud mouth Kayla talking your ear off 24/7 is probably quite the change. He might end up loving it more than when I’m home so I should be careful of that (kidding hahah, kinda of). I was stable the entire night which is great news, slept very little and woke up the next ready to kick some cancer booty. Friday, July 31, 2020 – Start of Chemo Most of the day consisted of a million tests. They wanted to make sure that before they pump me full of chemo I was stable. Turns out I’m 100% healthy (except Leukemia) hahaha so that’s great. They had to obtain the chemo release orders from the Dr.’s officially before we could start. While we were waiting for the orders a Nurse Practitioner (NP) came in and we went through all possible side effects of chemo and I had to sign-off allowing them to treat me. If anything during this process is going to freak you out its probably going to be this part. There were about 20 different side effects discussed. They ranged anywhere from mouth sores, to a secondary cancer to death hahaha. I started to spiral into worry numerous times but then had to take a step back and remember what I preached on my Lesson #1 Blog. Worry = Insecurity about your future. Yeah, I could end up dead because of this, but I could also survive this with minimal issues after the fact and go on to live a long and healthy life. So I signed the papers. After that the nurses came in and did double sign-offs on who I was, what chemo they were administering and the amounts based off my height and weight. They were wearing “chemo gear” which makes them somewhat look like the CDA in Monster’s Inc. when they found the child’s sock. It’s kind of unsettling that they gear up to avoid exposure to whatever they’re pumping you full of HAHAHA. But what was I going to do, say no? For those of you curious, the Chemo regimen I’m on is “CALGB10403.” It’s supposedly the gold standard for ALL treatment in kids/young-adults. It’s more aggressive than what they would give an older adult just due to the overall stress it will put on one’s body. You can supposedly Google it but after my last Google escapade I have yet to do so nor do I believe I will do so HAHA. As of now, I know I have four major chemo days (Friday’s). Those are the day’s where I will get bag’s of chemo through my PIC line. Starting next Friday, I will get the spinal tap chemo as well. For this first Friday round, I took two pills. Thirty minutes later they hung an IV bag of chemo with a light protector over it which took about 10 minutes to flow into my arm. Thirty minutes later the nurse hooked up a large shot looking thing to my PIC line and slowly pushed it into me over the course of 10 minutes. This was bright red, looked like a Jell-O shot kind of. Except not as fun obviously. I was expecting to feel a surge of nausea but I was actually okay. They pre-med the heck out of you to help prevent any nausea from occurring thankfully! I downed some Noodles and Company and then was literally out for the count. I’m not sure if I fell right to sleep because of the chemo or because of the build up of everything before this, emotionally, physically, etc. but I slept like a baby that night. ONE CEHMO FRIDAY DOWN – THREE TO GO BEFORE I GET TO GO HOME YA’LL!! YAY YAY YAY! Saturday, August 1, 2020 – Day After First Round of Chemo Today I woke up feeling great actually. No major side effects except the start of constipation (so annoying) so I was able to be up and about a lot actually. Most people don’t start feeling sick until about a week in so I used me feeling well to my advantage. The biggest piece of advice Dr.’s, nurses, Psychiatrists and other patients who have fought this have given me is the following: