Day 44 to 51 – Bone Marrow Biopsy #2, Spinal Tap #2 and I’m Home!

Monday, August 24, 2020 – Thursday, August 27, 2020

These past few days I’ve experienced more nausea than the previous weeks here at the hospital. Blah. But no puking SO SHOUT OUT!! They explained the increase in nausea is most likely because the chemo has now been accumulating over the past month, which is to be expected. Technically, in the month I’ve been here I’ve undergone (10 chemos….yikes). The nurses have been able to really control it with medicine and I pop a pill before I eat anything and can typically do okay. I mean I’m still crushing Chipotle burrito’s like it’s my job so like obviously I’m not doing too shabby in the tummy department hahah.

A few other weird side effects that have been comin’ in hot this week. 1) Tingling in the tips of my fingers. I still have feeling in them, they just feel asleep 24/7 which is very annoying but livable. The medical professionals, who know more than me, say that should fade away the farther out from chemo I get.. but also might be permanent. So prayers up. 2) Lower back pain. Not sure if it’s from my rigorous daily bike rides (sarcasm), or tight muscles, or chemo, or cancer or D… all of the above. BUT I’ve been stretching daily, hoping this will help subside my lower back pain. 3) Taste buds are shot. I woke up one morning and was like, “welp, my time has come. I have COVID.” Turns out, the chemo just wrecks your mouth and you have no taste buds for awhile. Aaron brought me a bottle of Siracha Hot Sauce and I literally have put it on everything I eat. AND I MEAN EVERYTHING. I have gone through an entire bottle of Siracha by myself in this one month stay. HAHAHA.

Overall, this week has been very chill. My counts have started to come back up on their own. My platelets are now considered in the “normal range” and they did that all on their own so I am very proud of those baby platelets of mine. It’s weird to see your white cell counts start to rise too because I obviously have a slight fear that an increase in my white blood cells also means increase in Cancer if this treatment didn’t work. But then I remind myself. That’s a what-if. Out of my control and worrying about it does nothing. So instead, I’m cheering on my increased counts and praying for the best.

Friday, August 28, 2020

Today they did my second Bone Marrow Biopsy and second Spinal Tap Infusion to see if this past 28-day chemo stent worked to push me into remission (i.e. no cancer). Both went as planned. No hiccups and I was able to get discharged to go home later that afternoon! Aaron came to the rescue with his binder of notes, asked a million questions about how to keep me alive and we left! When I walked out of my room, my nurse walked me down a hallway, handed me a certificate that all my nurses signed, and I rang the bell. I was crying, the nurses were crying. Everyone was crying. We wheeled my stuff down to Aaron’s truck, I got in and started sobbing again. I really can’t explain it. Leaving the hospital after a month is a VERY surreal feeling. I was freaked out to be in public but happy to be outside but felt like I didn’t know what I was doing. That night was ROUGH. I was in way more pain than I expected to be in after my bone marrow biopsy and spinal tap earlier that day. You can’t take Tylenol because it masks fevers (my biggest risk right now is infection) so I had to tough it out. Sleeping was rough but we made it through (barely).

Saturday, August 29, 2020

So I’m going to be real with you all. This was THE hardest day I’ve had since I’ve been diagnosed. I literally think I cried on and off the entire day. Aaron had mentioned over the course of the month I was in the hospital that I hadn’t cried once. I didn’t even realize I hadn’t cried. I probably would have tried to process earlier if I realized I wasn’t processing what I was going through to ease the blow. Ever since I was diagnosed on July 11th I hadn’t really processed what the heck was happening. I obviously cried when they told me I had Leukemia in the ER but that was it. Now… for those of you who know me I cry a lot usually. Like happy or sad I’m crying. So the fact that I hadn’t cried throughout the past 50 days was a recipe for disaster. I honestly think I just had put my head down and hadn’t had time to process what was happening. I went from being diagnosed, straight into the two week egg retrieval process and then inpatient for the month of chemo. Sitting on the couch that day I just lost my mind. Literally. I sobbed harder than I think I have cried in a VERY long time. I was processing the past 50 days all at once and it was ROUGH.

Oh also. I had to shave my hair today. I held out for as long as I could and wanted to do it at home rather than in a hospital bathroom. Which luckily I was able to do. But yikes. I sobbed. Aaron was so sweet, we played Lizzo (it felt right at the time) and we shaved my head. Now keep in mind, my cheeks are still SO PUFFY from my steroids. So not only did we shave my head but I still don’t have my face back. That is A LOT for a girl to process. I honestly had a really hard time looking in the mirror this day. Every time I looked in the mirror I felt like a walking cancer patient. For those of you who have gone through this, you can relate. Puffy cheeks and a very pale head. I guess I should cut myself some slack. This noggin’ of mine hasn’t seen sun for 26 years but dang, I need some self tanner FOR SURE. We did record it, but I haven’t had enough time to post it yet. You all WILL see it. I want to post it, but I want to get a little more used to it before the world see’s it. It’s kind of like a secret I want to keep a little longer. I’m not ready to expose my cancer head yet.

LASTLY. I was able to see my mom Saturday night. Aaron drove me up to my parents and we had dinner with them. I sobbed when I saw her. I hadn’t been able to see her since I checked in for chemo because she’s in hospice and can’t leave the house. Going through cancer is hard. Going through cancer while your mom is in hospice ALSO battling a cancer that she can’t shake makes it even harder. All you want is your mom when you don’t feel good. But life is life. I dealt with it and feel so fortunate that I was able to give her the biggest hug when I saw her. I cried. She cried. Everyone cried again. This goes back to my last post. Don’t take your family for granted. Yeah they may annoy the heck out of you but it’s times like this when you need them the most. Cancer is a funny thing. Makes you love HARD. Nothing is guaranteed. Time with your family isn’t guaranteed. Life can take people from you just like that. So love hard and DO NOT take anyone for granted. And if you’re lucky to still have your parents, go love on them. One day you won’t be able to and wish you had loved on them while you could.

Sunday, August 30, 2020

If you’re still reading, I’m sure you’re a little worried about my mental health. Crying all day, shaving my head and seeing my mom in hospice the day before was A LOT. But I woke up today feeling so much better. When they say cry it out, you’ll feel better… they are right. I needed to just let everything out yesterday. I woke up today ready to take on the world. I had a BIC appointment to check my levels and I’m recovering from the chemo swimmingly. I didn’t need any blood products which is awesome. My young Bone Marrow is kickin’ butt and taking names, so I’m very blessed! The rest of the day was filled with getting settled back into the apartment and me figuring out a new routine. I have a lot of time on my hands now and need to spend it focusing on my health… mentally and physically. Walks are my new best friend and I think I’m going to take up cooking. Chef Kayla let’s gooooooooo.

I have a Dr.’s appointment scheduled for Wednesday, September 2, 2020 to find out the results of the Bone Marrow Biopsy and Spinal Tap. If it turns out the chemo worked, and I’m cancer free we will push to Transplant and get going on that process. If I happen to need some additional chemo we will get a game plan for that as well. Prayers up ya’ll! Whatever it ends up being, we aren’t done fightin’ this! God’s got me.

XOXO

Kayla