The past week has been a blur but I’ll try and sum it up in this post. My last post and pictures looked happy and that’s because they were. That was Tuesday. Before the horrible Wednesday that ruined the rest of the week.
Tuesday I had some visitors in the evening which was great and kept me happy until they left. I told my parents they could leave me there alone that night but an hour after they were gone I freaked out and they came back. Turns out I’m not as brave and grown up as I thought 😁 Tuesday night was also the night I met my new favorite person in the world, my night nurse Mardel. ❤️
Wednesday I got intrathecal chemo which is where I lay on my stomach, they use an X-ray machine to see your spine and then give you a shot to numb your back. Then they put in a longer needle through your vertebrae into the spinal fluid cavity and inject some chemo. Basically the same thing as a spinal tap, except instead of taking out a lot of spinal fluid, they put in a chemo drug. The actual process isn’t as horrible as it sounds but the after part is what made my week absolute hell. 😡
I had just had a spinal tap the week before and had the most horrible spinal headache for about 5 days. They insisted that most people don’t have that headache with the chemo since you are putting stuff in and not out. I laid on my back for 2 hours like you are suppose to, plus the whole rest of the day because I was really scared to get a headache like I did with my first spinal tap. Sure enough, the change in my spinal pressure gave me the same absolutely horrible, debilitating headache..for 5 days. I wish I could describe the kind of pain that it causes but there’s really no comparison. You can’t sit up at all or stand without just sheer instant pain. Like you can feel your brain rubbing on your scull. Cause that’s literally what’s happening. And then if you lay down it basically goes away. I literally did not get up except to go to the bathroom for 5 days. 😳 I’ve never been in such pain where I would have rather peed myself than getting up to go to the bathroom. It’s that bad. I was absolutely miserable. Hence why I didn’t write any more blogs..they would eventually give me a pill to knock me out for several hours cause sleeping was the only thing that gave me some relief.
You must be thinking, surely there’s something they can do to fix that right? Well technically yes..they can do something called a blood patch. Which is basically again getting a shot in your back and then putting a needle back through your spine and injecting some of your own blood to cause a clot and “patch” the little hole where the fluid is leaking. The reason I didn’t do it was because for one I honestly just didn’t want another needle in my back. It’s not fun. And two, there’s a chance that the procedure can just cause the same headache. So I was just hopeful that it would go away on its own like the last one did. After all, there were a few good times in between.
Honestly if it weren’t for the stupid spinal headache, I handled the chemo like a champ 😁 next time they do the intrathecal chemo I requested it be done on day 1 so I don’t have the anxiety waiting for it and also that they do the blood patch at the same time. Hopefully this will work or I’m seriously going to kill someone. 5 days of no walking and a headache is quite frustrating. Oh I also fainted when I got out of the shower one night and thankfully my mom caught me so I didn’t crack my head open on top of everything else. Lol.
Friday was a good day though. Gunnar had surprised me the night before and even though the hospital sucks, he gave me a happy distraction and extra comfort. ❤️ Friday afternoon I was feeling pretty good and eating again. My parents, Gunnar and I played Heads Up in the hospital room and I actually got up and walked for the first time and went outside! It was quite a milestone lol
After the walk I felt like a 95 year old and was so exhausted. It’s crazy how fast that chemo sucks the strength out of you..plus not walking for days. Hopefully without a spinal headache next round I can actually stay active throughout the week. Later, Gunnar went and got me chickfila (chemo gives you pregnant person cravings) and everyone was just happy that I was actually eating anything. Friday night I got to take a shower (with supervision of course lol) and didn’t pass out! It felt so good to be clean, as if you are washing part of the chemo away or something. My nurse Mardel gave me fresh sheets and made my bed, plus a towel on my pillow so it didn’t get wet 😊 She is seriously the best.
I also got a fresh new cover for my port and got to check the skin underneath which I had been wanting to do. (Warning picture ahead!!) I actually could see how big the needle is inside..it’s about the thickness or thicker than a big paper clip. Ouch lol 😁 but my stitches are healing nicely and all is well. I’m kinda starting to like my port.
So Friday night I finished my last bag of chemo and I was only hooked to a bag of fluids through the night. It was so weird to only have one little tube connected instead of the usual 3 or 4 to get tangled up in. I also got the last nightly shot in my stomach 😑 it prevents blood clots and left bruises all over my stomach.
I was excited that Saturday morning I was gonna get to leave but when Saturday morning actually arrived, my horrible headache was back and I couldn’t get out of bed 😦 hours later in the afternoon we painfully got me to the back seat of the car where I laid for the hour drive home. Then I got straight in bed and basically laid down for 2 more days. If my headache didn’t go away by this morning (Tueaday, June 7) they were going to have me come back in for an MRI. I really really did not want to go back and I prayed constantly all night and I know lots of other people were too and God is good! I woke up this morning with NO headache! I was downstairs all morning and even got up and cooked myself lunch and hung out with my mom downstairs all day. And showered. It has been the best day ever 😊 I’m never going to take walking around for granted again.
So what’s next? Wellllll..the next two weeks I get blood drawn twice a week and my white blood cell counts will drop. White blood cells are the part of your immune system that help you fight of bacteria and infection. When my counts drop, my body can’t fight infection like average people’s so I have to be extremely careful about germs during the times they drop. This means washing hands, preparing my own food, cooking everything well, not going places with lots of people, etc. I will also get a lot more fatigued and need to rest a lot more. And eventually my hair will begin falling out. It could be tomorrow, could be in a week. All I know is that I’m not going to sit and wait for it to happen and have the traumatic experience of pulling out clumps of my hair till its gone. No thank you. I’ve been mentally preparing myself for this since day one. Everyone knows that cancer patients lose their hair. That’s because cancer cells are fast dividing cells. You know what else are? Hair cells. And chemo isn’t smart enough to distinguish so it kills all fast dividing cells in your body. Which is why hair falls out. 👍🏼 Which if you think about it, it’s a good thing because that means that my chemo is working and my cancer is getting killed. Of course nobody wants to lose their hair but just like the rest of this, it is what it is. And I’ll deal with it just like I’ve dealt with everything else. If I can handle needles going into my spine and a port surgically going into my chest, I can handle shaving my head. To me it’s all about being in control and not waiting for some sad production of my hair slowly falling out. After all hair is just hair. It will come back. I already have tons of cute hats and have been practicing being bald for weeks now lol. All the people that I love are going to love me just as much without hair, although I haven’t convinced anyone to shave their head with me yet haha any takers? 😉
Anyways, thanks for everyone who has been following my journey and sending me love. Continue to pray for my overall health the next two weeks and I’ll update soon!