Hi cutie butts! Comin’ to you live from the 11th floor of this fantastic hospital room I am loving so much. I have a spectacular view outside of my video of a construction crane and numerous buildings just as I had always dreamed it would be. Just like last post, I’ve summarized my progress/updates as applicable for the week. At the very bottom is a video update showing you guys all what my day to day looks like if you’re interested! Love you all and miss seeing your faces in person. Hope you’re all staying safe, healthy and happy! Piece of advice, don’t catch the ‘Rona out there (or Leukemia for that matter hahah) – you don’t want to end up in an extended hospital stay if you don’t have to hahaha. Cheers to getting through another week and doing pretty dang well! When I came into the hospital my blood was full of 89% cancer and we are down to 8%!!!! The prayers are working, so thank you and I love you all so much!
Monday, August 3, 2020 – Immunotherapy Infusion “PEG”
Today I had my one and only immunotherapy infusion during my 28 day stay here at the hospital. The Dr.’s refer to it as “PEG.” No idea what that stands for, and again, I refrain from Googling anything anymore. That’s on you if you want to Google it hahaha. The Dr.’s and nurses were with me basically the whole time monitoring me because 25% of recipients go into anaphylactic shock while being infused with this therapy… ohhhhhh. Good. They are consistently asking you how you’re feeling, taking your vitals and poking at you. Hard not to get in your head. I was like hhmmmmm yeah you’re right maybe my throat is hurting. IDK. Oh my pinky toe on my right foot kind of hurts. Does that mean I’m dying too? I was way more nervous for this infusion than my first round of chemo last Friday because they were making a lot bigger deal about it than my chemo. To prevent anything from happening, I got a decent amount of Benadryl in my IV. I had never had this before but I would not recommend. Makes you feel so loopy very fast. Most of you know, drugs are not my jam. I don’t like feeling anything but my normal self but I guess very loopy is better than my throat closing and me dying so I dealt with it. Supposedly this immunotherapy is the opposite of chemotherapy. Basically this infusion is used to build up the good parts of my immune system rather than kill off everything like Chemo. Medicine is absolutely insane these days. Shout out to 2020 – I’d for sure be a goner if I was diagnosed with this 50 years ago. It was just a clear bag of what looked like IV fluids. No major side effects after the fact (expect the initial risk of anaphylactic shock) so that’s a positive. I felt fine after, just tired. Nothing too crazy to report besides that which I guess I should be happy about, am I right?
Tuesday, August 4, 2020 to Thursday, August 6, 2020
It’s so weird that most of your time here you have nothing happening. From what I’m already gauging, cancer treatment is a lot of pumping you with poison, waiting to see if it worked and hoping it doesn’t wreck you. During the week when I don’t have scheduled infusions/chemo, the nurses just come in, take your vitals throughout the day, give you your 20298272 anti-everything pills (since I have no immune system), help you shower and change your sheets… kind of weird and I feel bad because I am capable of changing my own sheets but hey it is what it is. When I was first put into the hospital I was put on a bed alarm because of my fantastic passing out story the day of admission. What is a bed alarm you ask? Oh it’s the time of your life. Basically anytime you want to get out of your bed or chair in your room you have to call the nurse and they have to shut off the alarm and watch you do whatever you want to do. Yes – this includes going to the bathroom. EVEN when you haven’t pooped in three days and finally have to go after they’ve pumped you with so many stool softeners and laxatives… not kidding. They have to monitor that. Make sure I don’t pass out on the toilet I guess hahaha. So you get real close, real fast to your nurses. Shout out to them. Bless their hearts. Thanks for all you do. I’d be puking every shift if I did what you guys do. Or crying. Or both. But I love all my nurses so I’m blessed. Also… I am currently hooked up to continual fluids (literally non-stop fluids) to help flush my Kidneys of all the chemicals in my body. This, and my small Blick bladder means I am literally peeing once every hour. What does that mean you ask? I have to call the nurse every hour so they can come in, shut off my alarm and let me pee. It’s so fun for not only myself but them as well. BUT GOOD NEWS. Management had seen me cruising around the floor on my walks (1.5 miles a day might I add) and deemed me stable enough to get off the alarm FINALLY. So now I am more independent which is SO MUCH BETTER. I just have to be monitored while I shower but I’ll take it. Small steps.
Lol… you think I’m kidding about the name. I’m not. With the continual saline drip I’m on (purpose is to flush my Kindey’s of the chemo ASAP) along with the steroids I’m on as part of my treatment my face is not necessarily “glowing up.” This has been a big struggle for me this week, which isn’t what I was expecting. I guess steroids, especially the one I’m on, “predisone” is known to cause puffiness in your face as it unevenly distributes the fat in your body to your face I.e. “fat in my face” as I call it. I was in denial that this would happen, although they warned me and it’s frustrating. I know a lot of people say this is the least of my worries… but it’s also okay to feel whatever you want to feel about having a round moon face. It’s a reminder that you’re sick. When you look in the mirror it is a reminder that you have cancer and that you’re not “normal” right now. That’s a hard pill to swallow every time you look in the mirror. So, please know that if you’re going through this right now… I feel you. I understand and it’s okay to be upset about your round moon face. You’re allowed to be upset about literally anything you’re going through and if it happens to be that you have more fat in your face right now then so be it. BUT you also have to pick yourself back up and know it’s not forever. This is something that I’ve told myself a lot lately. It’s not forever. They’re fixing me and I will be okay once this is all done. You can’t lose hope. And honestly, maybe shifting your mind set to be like ”fat face = getting better” might help some too hahaha. I told Aaron that I didn’t know what pictures to take anymore because I don’t want anyone to see my puffy face. But he reminded me. The reason I started the blog was to be open and honest with everyone about everything I endure on this journey. If I don’t touch on this aspect/struggle I’ve encountered this week and hide my Moon Face then I’m not being open and honest. If someone going through what I’m going through reads this and I don’t touch on how upsetting it is to have fat in your face hahahahah then they may feel alone. So I said screw it. I’ll acknowledge this moment. I’ll be vulnerable with you all and say I HAVE MOON FACE. MOON FACE SUCKS… BUT IT’S NOT FOREVER. So take puffy chipmunk pictures. Love your cheeks the best you can and remind yourself that “fat face = getting better.”
Friday, August 7, 2020 – CHEMO ROUND 2
Second round of chemo was a go today. I didn’t have time to ride my bike today so I tried to go for a walk after my chemo and only made it 0.3 miles around the Bone Marrow loop. Today was a hard day – the first time I was realizing the chemo is making me weak. Going from sprinting my booty off at Orange Theory to just being able to walk .03 miles is SHOCKING. Additionally, my mom is really starting to struggle and saying things like she thinks her time is coming. For those of you who may not be aware, my mom was diagnosed with Stage 4 Breast Cancer about 18 months ago. This isn’t a curable cancer and she has been in Hospice since the start of COVID (March 2020ish I believe). Watching your mom (or any parent for that matter) deteriorate right before your eyes has to be one of the scariest things you could go through. My heart goes out to all of you who are/have experienced a dying loved one. It’s heart wrenching. It’s REALLY scary to think she may eventually pass while I’m inpatient getting chemo to treat MY cancer. No one should have to grieve a parent while young, but it’s especially frustrating that I may have to grieve her while I’m in a hospital receiving chemo to treat Leukemia. Today I did a lot of soul searching. A lot of why? A lot of what the heck’s? A lot of what is the point? That’s when I remembered a story my mom used to tell me:
Footprints in the Sand
One night, I dreamed I was walking along the beach with the Lord. Scenes from my life flashed across the sky in each. I noticed footprints in the sand. Sometimes there were two sets of footprints; other times there was only one. During the lower times of my life I could only see one set of footprints so I said, “Lord, you promised me, that you would walk with me always. Why, when I needed you most would you leave me?” The Lord replied, “My precious child, I love you and would never leave you. The times when you have seen only one set of footprints, it was then that I carried you.”
This instantly gave me comfort. I don’t know how to explain it. The fear and nerves of what’s to come vanished because I was reminded God has me. No my mom won’t always be here with me, and unfortunately that’s just the reality of the situation but she gave me my faith and a relationship with God that I’m so blessed to have. She showed me you can’t lose hope and that anytime you’re feeling scared and alone, you’re not actually alone. God has you 100%. He will never leave your side and will get you through situations that seem like the most impossible situations to get through. So for all of you out there struggling, freaking the eff out and thinking life’s about to just blow up in your face take a deep breath and know that’s not true. You’ll never be alone. God is carrying you at your darkest times and is walking along side you when you’re doin’ your best. You’re going to make it through. You’re going to see light at the end of the tunnel. You just have to trust and let go.
Saturday, August 8, 2020 to Sunday, August 9, 2020
To lighten the mood of this post before I sign-off for the week we took a compilation of videos throughout the weekend. Hoping to give you guys more of an idea as to what life is like in here on a daily basis. Lots of laps around the Bone Marrow Floor, lots of movie cuddles (while still staying in your lane because of germs [eye roll]), lots of journaling and decent“ish” hospital food. I am no videographer but enjoy ya’ll!