Another week down! I’ve officially been inpatient for 17 days with three rounds of chemo done! Hopefully only 12ish more days until I’m home cuddling Bentley, making sure Aaron is eating enough food and sleeping in my own bed! Where the heck does the time go? I feel very blessed as this overall process has been most difficult due to boredom rather than intense sickness or crazy hiccups along the way. SO thank you for the prayers and well wishes! Keep them comin’ please! Love you all!
Monday, August 10, 2020 to Wednesday, August 12, 2020
As mentioned last week, a lot of my stay here consists of just chillin’. Which is very ironic because there were so many days before I was diagnosed that I woke up wishing to have no responsibilities and time to chill. I had wished I could take time to myself, work on myself and ultimately focus on myself. Be careful what you ask for I guess hahahah. God has a funny sense of humor doesn’t he? It’s crazy how being forced to slow down and take a step back changes your perspective on things. For example, driving myself to Target and going inside to spend $456,159 on unnecessary items is something that seems so foreign to me now but something I am 100% looking forward to when I am able to do so again. Or even going to the grocery store. I cannot wait to go grocery shopping hahahaha. Yes that’s where I’m at right now guys. King Soopers sounds like the place to be… yikes. I’m going to end up being the girl that goes to the grocery store once a day to buy one thing at a time just to go to the store because I can.
Although bored, I’ve been able to meet so many amazing nurses and Dr.’s who have made this experience as amazing as possible given the circumstances. It is fascinating to hear their life stories and how they got to where they are today. Everyone, and I repeat EVERYONE goes through difficult seasons in life and it’s inspiring to hear what these individuals have overcome in their lives and are doing fantastic today. From personally fighting cancer themselves, to having a family member who fought cancer. People kick cancer’s butt every day. Which is exactly what you need to hear when your days feel long in your hospital room. So many people in this world are so great and amazing and it has been very refreshing to talk to these people during a time in this world where it feels like everyone is cruel and selfish. It’s a nice reminder that there are still so many amazing, kind and beautiful people out there. You just have to take the time to get to know them for them. So if you’re ever overwhelmed about the negative, especially in social media/news outlets today, take it from me. I’ve met hundred’s of people since I’ve been in here and everyone has huge hearts and kind souls. People are still good. Don’t let the negative media of today’s world bog you down because that isn’t necessarily true for all human’s in the world today.
A lot of you have been asking if I am going to need a stem cell transplant at the end of this. I have a hunch that the answer is yes BUT it is not confirmed. We will know next steps after the Dr.’s do a bone marrow biopsy after this 28 day treatment period. The results of that will determine if I need more/different rounds of chemo or if I need a transplant. Sounds like T-Cell ALL is pretty aggressive and so most go to transplant (but again this HAS NOT been confirmed). Yet, to prepare for either situation we’ve already put the wheels in motion to prepare for transplant if needed. Both my little sister (Kierstin) and little brother (Brayden) have been swabbed (cotton swabs to the inside of their cheeks). My brother is a 50% match and my sister is a 100% match! Overall, siblings have a 25% chance to be a 0% match, 50% chance to be a half match and 25% to be an 100% match. The Dr.’s initially thought that Brayden’s other half didn’t align with mine and would have some anti-bodies preventing us from being a match, so they took some of his blood and have been running tests against some of my blood. Turns out it doesn’t appear as though our anti-bodies would attack each other which is amazing and he can still possibly be a match. This is all great and amazing news because it means we will have lot’s of options if/when it comes down to transplant time. Another blessing ya’ll!!
From my understanding (don’t quote me, I’m a CPA not a Dr.) when you have a sibling that is a match you can also use stem cells from a fetus’ umbilical cord as the other half of the stem cells you receive. So for all you momma’s out there having babies, donate the stem cells from your baby’s umbilical cord! You could end up saving someone’s life and give them a second chance at life – like me for example. If you decide to donate the stem cells from the umbilical cord, the stem cells are put into a world wide database and if there is ever a match they are flown to anywhere around the world to be used in a patient needing the transplant. It’s pretty insane. It’s a very exciting concept and amazing how far medicine has come.
When all is said and done and IF I end up needing a transplant I’ll have three big “parties” every year which I AM SO HERE FOR. Viewhouse rooftop party’s three times a year to celebrate Kayla… oh my goshhhhhhhhhhhhh. Bangin’. I would end up having an actual birthday (the day you’re physically born – February 8th in case ya’ll forgot hahahah), my cancer free date and then my second birthday which is your transplant date. It’s insane. I learned if you end up getting cord blood from an umbilical cord you have to get all new immunizations/shots like you would as a new born baby. It’s a fresh start literally. Makes me very emotional to think about having a potential second shot at life. It’s very surreal but honestly amazing at the same time. Gives me fire under my booty to never take a day for granted again and live everyday to the best of my ability (as you should all). You never know what’s going to happen in life.
Thursday, August 13, 2020 – Spinal Tap Chemo 1
Momma we made it to the big leagues. The Dr.’s came in this morning and announced today’s the day for my Spinal Tap Biopsy/Chemo Infusion (similar to an Epidural but they pull out spinal fluid and replace the missing fluid with a type of chemo). When I was first admitted, the Dr.’s wanted my white cell count to be between .1 and 0 before we did this procedure but I have been sitting at .3 for a few days with no significant movement. The Dr.’s said that’s nothing to worry about because .3 is still significantly low and believe the white blood cells left are actually healthy cells that my young marrow just won’t let go of. Anyways, they come in, give you some IV anxiety medicine, have you sit with your arms hunched onto your bed side table with a pillow while you arch your back like a cat. The Dr. pushes around to try and find a place between your vertebrae in your spine and they start shooting you up with numbing medication. The initial numbing shot was the worst part. After she got the area numb is was a cake walk. It took her about five minutes to pull all the sample spinal fluid into test tubes (to see if I have cancer in my spinal fluid or not) and then another five minutes to push in the chemo regimen. Why get chemo pushed into your spinal fluid without knowing if you have cancer in there to begin with? Good question. Their answer was literally, “Well why not? We are already in there and it won’t hurt anything.” Ohhhhhh. Silly me. Why didn’t I think of that? HAHA. Once she pulls her needle out and puts a band aid on your back (the band aid is the size of a band aid you’d put on a paper cut hahah) they ask you to lay down flat on your back for an hour. The reason behind this is to ensure you don’t end up with a headache. Sometimes, when there is spinal fluid pressure changes it can result in a pretty bad headache. Luckily, I’m great at following directions and I was fine!
We should find out the results Monday, August 17thish. If they find there IS cancer in my spinal fluid I’ll do a few more of these spinal tap chemo infusions throughout my last two weeks here. If not, (best case scenario), then I won’t have to do any more spinal taps. SO PRAYERS UP. Overall, procedure wise, I would say the Bone Marrow Biopsy (the one I got when first diagnosed) was way worse than the spinal tap. So if you are in my shoes ever and need to get a spinal tap you’re going to be JUST FINE. I pinky promise. They sound way worse than what they actually are.
Friday, August 14, 2020 – Third Round of Chemo
Third round of chemo done! Today I had my normal infusions (2 different kinds – the clear IV bag of fluids and the red jello shot looking chemo). I wasn’t expecting to feel very sick as I have been feeling pretty good these past few weeks. Unfortunately, I was slightly wrong with this initial assumption. I ended up being very constipated and more nauseous than I had ever been before. Oh and some of this may have been self brought on because I asked my Dad to bring me spicy Mexican food for dinner so I had the worst heart burn I’d ever had in my life. HAHAHAH. Whoops. They were so concerned they did an EKG in the middle of the night…. turns out my chest is fine but chemo doesn’t mix with La Sandia… sad sad day. I’ll just have to save my Chicken Zarape for the day I’m released from the hospital and stick to more “bland foods” for the remainder of my time here. BORING. But at least I won’t stress my nurses out again by telling them, “I’m having slight chest pain.” PSA: Chest pain isn’t a friendly phrase around here I’m learning.
Although feeling a little more sick than normal Papa Blick came to spend the day with me (Friday’s are his days), so it was nice to spend that quality time. Something cancer has taught me, quality time with family and friends is something I’m going to strive to do more so when I’m out of here. I think we ALL have a tendency to get into the groove of our busy and hectic life and sometimes forget what’s most important in the grand scheme of everything. Being present when you’re eating with someone. Attentively listening to what the person is saying to you while having a conversation. Putting phones, tablets, work and laptops to the way side during these special moments spent with people. It’s so easy to get bogged down in everything besides what is going on right in front of you with all the different streaming outlets available today. I’m thankful for the quality time I’ve been able to spend with my family during the past few weeks. It has allowed us to have conversations about topics so much greater than what the forecast looks like this week. I wouldn’t trade any of this special time with them for anything.
So for me – put that phone down while you’re eating dinner with friends, families or acquaintances for that matter. Don’t allow outside distractions to effect quality time you’re able to spend with people. It’s not about the quantity of time spent with someone but the quality. Take on this challenge for me this week and let me know how it all shakes out! I bet you won’t regret it. I love you and miss you all so much! Thanks for following along!
Saturday, August 15, 2020 to Sunday, August 16, 2020
Aaron didn’t eat yogurt this week so his belly is fine (yay he’s learning hahah) so we are all set and have a compilation of how things have been going from his side of things this week (from a caretakers/boyfriend perspective). Don’t kid yourself, he loves this HAHAHA. We also discuss my chemo symptoms in more detail for you curious cats. Enjoy!!