Updated: Sep 17
The last couple of weeks have been intense and at times, forgettable. From hourly vital checks, lots of medications, uncountable IV administrations and multiple x-ray's, to sleeping parts of the day away and getting my head shaved, it's like a whirlwind. Whew!
My trial participation began with feeling pretty overwhelmed. There were multiple steps--all of which seemed trecherous. I started with chemo, which made me mostly nauseous Then, I received my billions of TIL's cells that had been harvested. I guess I thought that part would be way cooler. I don't know why, but I anticipated the cells being delivered by astronaut lookalikes. Nope. It was a pretty ordinary event; however, the day is significant. My 'second birthday' is now considered to be September 10, 2022--the day in which my chance of a new, cancer-free life begins.
After I received the cells, that's when things got intense. I started receiving a hefty immunotherapy drug to activate those cells every 8 hours. I immediately experienced low blood pressure, fast heart rate, low oxygen, rigors, spiking fevers, etc. With each new dose that seemed to compound, but my body would initially bounce back with the treatment protocol.
Once I made it through infusion 5, things changed. I felt awful. It was scary and my vitals were not rebounding. I recall constantly saying, Jesus, take the wheel. Usually, I just say His name because there is power in His name alone, but for some reason this was my go to.
Long story short--we stopped at the 5th infusion because the risks outweighed the benefits. I was happy with my doctor's call on this one, as I felt uneasy about proceeding and I've learned to listen to that still, small voice.
Like all things cancer, there's often no rhyme or reason why one person responds to a particular treatment and one does not. Research shows that some have received 1 of the infusions and are still cancer free, while another received all 8 and still experienced cancer progression. Getting through infusion 5 was sufficient for me, as my body was clearly responding with the presence of all of the side effects. Essentially, I was experiencing a cytokine storm.
Eventually my vitals rebounded. I do, however, have a crazy rash all over my body, but thankfully it does not hurt or itch. My hair also began falling out, so a barber came to my hospital room and cut it for me.
As I sat there bzzzzzzzzing, I was able to fight back the tears, but it was tough. Not from a vanity perspective, but because I've always been able to trick myself into believing I do not have cancer because I didn't look the part. Now, I look the part. While the barber was buzzing my hair, I thought, Jesus, take the wheel again. Then, I said, no wait....take the clippers! I cracked myself up. Ha!
Each day I'm making progress and able to remove a monitor or two, which is huge. Trying to shower without getting your central line wet and connected to an IV pole is no easy task. I've been off of oxygen and I'm no longer on bed arrest as of today. Thank God!
I'd like to shout out to my amazing family and friends who are literally carrying our family right now. From prayers, to meal deliveries, sleeping on a cot, to car rides, lunch dates, to sleepovers, grocery deliveries, to GoFundMe donations, etc. The list literally goes on and on. I'm also grateful for the impeccable care I've received at Moffitt. I'm so so thankful for all of you. Truly.
As I wrap this blog post up, I was just reminded of my tendency to see mountains instead of mole hills in just about everything. This clinical trial included. I'm basically done with it. I'm freakin' done! I did it! Although it was hard, it was not impossible like my thoughts were trying to tell me. With Jesus driving and my willingness to keep fighting, here we are. One step closer to being cancer free.
May we all walk in the truth that no matter what we face and how gigantic it seems, we can always overcome and transition from the victim to the victor if we have faith and continue to fight.
Love & Sunblock