HAPPY NEW YEAR!

Oh gosh, what a rough past few months I've had ... but I think I'm maybe finally through the worst?

Shortly after my last update in September, I ended up back in the hospital again needing what I was trying to avoid the most - a double nephrostomy. Basically both of my stents failed (did I mention I had to get a left one put in?) because of tumor growth and my kidneys weren't able to empty into my bladder soooooooo the only way to keep them functional was having that procedure done. Now I have a hose coming out of each side of my back connected to two **lovely** pee bags. Not gonna lie, I cried bitter bitter tears about these new accessories and even though I've gotten a lot more used to it over the last three months, it still sucks.

Because of the adjustment and my overall lack of energy, I took most of October off of coaching and just when I was starting to get back at it, I ended up in the hospital again. I began having lower left-sided back pain again that got really intense within a few hours (red flag for kidney issues), so back to the hospital I went. It ended up being a **whoops, my bad** situation because I had forgotten to unclip my hose when I was done flushing it ... but it wasn't until I was already admitted that one of the nurses noticed that was the case. After it was unclipped, the relief was almost immediate - I would compare it to your leg falling asleep and the feeling as the blood rushes back, kind of uncomfortable but nice. So I joked with the nurse and figured I'd be out of there first thing in the morning. 

The following afternoon right before discharge time, I spiked a fever so they recommended I stay. Long story short, my fever ran for a few days and they started me on antibiotics while they waited for my blood cultures to result - I ended up having a staph infection, but luckily it was a strain that does respond to antibiotics and I was able to go home after a week (just in time for Thanksgiving) with my port still accessed so I could continue the antibiotics for another two weeks. 

I was so glad to be home but still having major issues eating and drinking... I guess I forgot to mention I got to start a new clinical trial at the end of October through Emory but when I was hospitalized in November and had CT scans, they saw my tumors had grown more and so I was pulled from the trial. My oncologist was great about getting me started on another treatment (actually an FDA-approved drug called futibatinib) but also let me know that if I don't respond to this treatment, the next steps are pretty much keeping me comfortable to die. That was really hard to hear and with how bad I was feeling physically, death honestly didn't seem too far away.

Within a week of starting futibatinib, I started feeling relief from the bloating in my abdomen and I was able to start eating normally again for the first time in months - and it goes without saying what a difference some food makes! My energy started coming back and I've started putting a little weight back on. With my health improvement and our newfound appreciation of life, Dexter and I have decided to make a commitment to enjoying each other's company more and traveling (especially while I'm feeling good) because that's something we both love doing. Our first big trip is happening this week - to ALASKA! Seeing the northern lights is definitely on my bucket list so I'm beyond excited and Dexter really wants to ride a moose LOL. 

So here's your sign to take that trip, use those days off, hug and kiss on your significant other, appreciate your health, enjoy life, and try not to let the little things get you down too much because you never know what's going to happen. And that's my deep thought for the day ;)  Love you all!

Hugs,

Benita

PS. I'm also headed to MD Anderson directly after Alaska to make sure we have the next treatment plan laid out cuz "making myself comfortable to die" ain't gonna cut it.