Chasing the white rabbit..

Yes down the hole, into an unpredictable world, one that still feels very dreamlike… one that feels still too surreal. Even at 15 months of treatment.

It’s been a minute so lets back track a bit.
Jan/Feb right dab in the middle of my 2nd line of treatment (Paclitaxel and Ramucirumab) Mayo offered me the opportunity to try again for a clinical trial. The same one from last October that I wasn’t able to join due to not having measurable disease. To be more specific – I had .9cm node vs the 1cm minimum requirement. If that seems annoying, imagine my own frustration.

I was also required to reprove my claudin expression which means I had to provide new biopsy. This time from my left hip bone.

Does bone express claudin? it’s rare but not impossible.

Did it? NOPE.

Why? Because they pulled tissue/bone (5 pieces to be exact) from a benign lesion.

After that torture of getting my hip bone drilled into for no good results, I had to then advocate for an upper EGD, which was successful in finding Claudin.
But alas, just 3 days shy of starting the trial, I get the news that the whole thing has been cancelled. The trial research stopped, the data not successful enough to continue. They laid off 70% of the pharmaceutical staff.

So I am back onto systemic chemo, and on 3rd line because well… progression. 3rd Line – Irinotecan and Ramucirumab

I was definitely cutting it close there with stopping treatment for almost a month. I was not doing well, I was in pain and struggling to maintain a daily routine. On top of that, as of this post, I currently have reoccurring ascites as well to contend with, which has greatly affected my quality of life.

What is Ascites you might ask?
Ascites is a condition where fluid accumulates in the abdominal cavity, causing distension and swelling, which can lead to shortness of breath, nausea, and a general feeling of discomfort. This uncomfortable condition is primarily caused by the cancer spreading into the peritoneal cavity, leading to numerous side effects that complicate my already challenging situation.

To alleviate the situation, I have had to undergo weekly draining (paracentesis), which is not only physically taxing but also mentally taxing as I grapple with the frequent medical visits. I am averaging 3 to 4 liters of fluid weekly, and it serves as a stark reminder of the battle my body is enduring. We will continue draining in hopes that the new line of chemo will start to work on drying it up, and I’m holding onto that hope with every session. If not, I will have to have a permanent catheter inserted to be able to drain at home, which would add yet another layer to this already complex journey.

This entry post has been rather hard to write, as the emotional rollercoaster continues, along with the physical aspects that have me a bit debilitated.
Quality of life has been shifted, and I am acutely aware that my mind/spirit must also shift into an even more steadfast state, one that can withstand the challenges and uncertainties that this journey brings.

My medical teams have encouraged me to keep seeking clinical trials, and I will, as I understand the potential these opportunities hold for better treatment options in the future. However, for the moment right now, I just want to sit, take a breather, and dust off the dirt from the tumble I just had going through the rabbit hole, allowing myself the space to regroup and gather my thoughts before I dive back into the fray of it all.