CNS Phase complete!

I haven’t updated a whole bunch on my blog lately because the CNS phase of treatment was definitely rougher on me than I anticipated.

It was two very busy weeks and I know I’ll still be recovering for a bit from it.

Day one I got IV chemotherapy, a lumbar puncture, while brain radiation, and started my oral chemotherapy and high dose steroids. It took them quite a few tries on my lumbar puncture and eventually had to get a second person to come down to do it. I have a very slight curve in my spine so this makes inserting the needle between the vertebrae more challenging.

I felt alright that day despite all the stabbing in the back. Unfortunately all the treatment is cumulative so each day it piles on to the last. The radiation treatments themselves aren’t bad but the side effects are delayed. By the end of last week I’d had five days of radiation, two lumbar punctures, and was just finishing up my five day course of high dose steroids.

The weekend hit and I just felt so utterly crummy. I no longer had steroids so any inflammation in my brain from the radiation was causing my headaches to surge. Plus discontinuing the high dose steroids without a taper basically made me feel like I had been hit by a truck.

Due to the lumbar punctures I couldn’t be upright for long without my head pounding. I essentially spend all my time laying flat. When Monday came around I was due for another lumbar puncture but I got sick that morning after getting my blood drawn and felt truly awful. My team took one look at me and said we could postpone the LP to Tuesday.

I was very thankful for this. They also started me back on a low dose of steroids to help with the inflammation from the radiation and curb some of the withdrawal. I got sick again while driving home (Luke was driving) so I think they made a wise decision in waiting.

The next day I felt slightly better so they went forward with the LP. It went smoothly as they figured out the correct angle to approach my spine. Of course that being said I spent the rest of the day with pain down my right leg that made moving around difficult. This was likely due to a pinched nerve, or inflammation from the frequent LP’S.

Luckily it had subsided by Wednesday and I had a started having a pretty good day. It was my eighth and final brain radiation so I finally got to say goodbye to that. My hemoglobin was low so they had me get a couple of units of blood. It gave me a little pep in my step and Luke and I actually were able to go out and enjoy our favorite pizza together. It was the first day in a long time that I wasn’t dealing with a headache.

Of course the good times couldn’t last and yesterday (Thursday) my headache reared it’s ugly head and I had to get my last LP. This went smoothly but on the way home I get again got sick (at least this time I had a bucket). I spent most of the day in bed but I felt decent enough to make myself some soup for dinner only to develop acid reflux and then it all came back up.

I have spent 90% of today laying down with ice on my head and trying not to aggravate my head. Nothing has worked to lessen the pain today and the pain makes me nauseous. Luckily I didn’t have to be anywhere today because I don’t think my stomach could have handled a car ride.

I don’t really like complaining but it’s been a rough phase and I want to try to always be as honest as I can with how things are going. I do my best to have a smile on my face and stay positive but not every day is that easy. Luke is a trooper for putting up with my crazy mood swings and poor attitude lately. I don’t know what I would do without him. I can tell he is run down too, but he is always there for me even when I don’t even want to be around myself.

That’s all I have for now. I have a full week off before we start to discuss the next phase of treatment so that should give my body and mind some time to recover. Enjoy some pictures of our purrfect Penny giving me lots of snuggles today. She knows what momma needs.

Love, LB

5 thoughts on “CNS Phase complete!

  1. Oh Lindsey that is so much to handle and to try and be positive and put a smile on your face everyday is just amazing and inspiring. Hang in there girl and get the much needed rest on your week off! If you need anything at all let us know.and keep staying positive!


  2. You are so brave! And your body is strong. Going thru hell and you have a beautiful smile. I know your story will inspire others, like the MB twins dx this week 😢 pray for you and think of you!


  3. Hi Lindsey,
    I caught wind of your blog from the media. My brother just finished his CNS phase for ALL yesterday too (but in Ontario). I really appreciate you sharing your story as it gives me insight into his battle. He is facing his battle alone in isolation at the hospital due to COVID (and he doesn’t often share all the treatment details with me due to fatigue). Praying for miraculous healing for you and your husband. You are beautiful and brave!! May hope fill your heart always.


  4. Hey Lindsey. You really are going through such a rough time. It is important to try to be positive but it’s totally fine if you have days where you are absolutely miserable!😉 What you’re going through is one of the hardest experiences there is and you have every right to feel however you are feeling at the time! It’s not “complaining” or “being negative”, it’s just being a normal human being! Hope you have a better week. XXX p.s. your Penny is adorable! My cat is a ginger version of her!😊


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