No More Seattle Trips?!
Cancer and all its treatments of various kinds come with side effects you might not initially anticipate. We’ve been chasing some of these symptoms and side effects for the past many months, unable to find the cause. We’re finally starting to get some answers, but that doesn’t mean it’s all good news.
The Fun Stuff
It’s been a while since my last blog post, the last few months have been pretty fun packed! February was Reegan’s 11th birthday and we celebrated with a long weekend stay at Great Wolf Lodge indoor water park. The kids had an absolute blast, and it was fun family bonding time. My birthday was 2 weeks after Reegan's and we had a barn party with some close friends here on the farm!
The second week of March, Reegan wrapped up her first basketball season with a tournament and although they didn’t win the tournament, their team won over half their matches! They worked hard and progressed throughout their season which was awesome to watch. Reegan really loved the experience and making new friends! She's excited to play another season.
At the beginning of April, we did a family trip to Idaho to cross off one of my bucket list items and hike to several natural hot springs! We all piled into our van with our dog Oakley and enjoyed the beautiful 8 hour drive up the Columbia River gorge and into the stunning landscapes of Idaho!
The Not So Fun Stuff
Now to the less fun stuff. At the beginning of January, we switched insurance providers which started an ongoing battle with getting them to cover my maintenance medication-Cyramza. Jamison had already contacted them to ensure that the switch would be seamless and that they’d cover my medication before we’d made the switch, but apparently, they changed their minds.
I’m supposed to get Cyramza up in Seattle every three weeks, and each treatment is between $15,000-$19,000! Ooph. We’re not trying to pay that out of pocket! “Would you also like my first-born son?” Yikes. (Just kidding, love my son, he’s the best lol)
With this insurance drama I have missed several treatments and am off all medications that are cancer preventative, aside from herbal supplements. I’ve just been diving deep into my regular at home hyperbaric sessions, workout routine, and the sauna a few times weekly, as well as ice bathing! It has definitely seemed like God has taken the wheel with the insurance provider giving us a runaround. We know He’s sovereign in what we can’t control, and that I’m still responsible to be a good co-pilot and put in the work that He enables me to do.
Even with this break from medications, I’m still losing a lot of protein in my urine (buckle up for the overshare or get out while you can) so my doctor ordered a 24-hour urinalysis test. I collected my pee in a jug for an entire 24hrs of my life and sent it off to the lab. That’s my idea of a fun time for sure.
The results came back off the charts high in:
Copper
Albumin and
Protein
I made the mistake of hopping on google- high copper? Indicative of leukemia.
High albumin? Indicative of kidney failure.
Jamison: “GET OFF GOOGLE RACHEL”
Aye aye captain.
In addition to those fun results, we did a hormone test and results came back to show an astronomically high level of estrogen! Normal is between 3-16, and your girl here is an overachieving 101! This is concerning at best. Though my type of cancer hasn’t been estrogen related or effected at all, there are types of cancers and other diseases that could explain this high of levels, so it’s worth snapping pics of the inside to see what's going on.
Last week we had phone consultations with both my naturopathic doctor and my oncologist, they both think it’s time to call it quits on Cyramza. The damage to my kidneys has indeed been done, and though it’s manageable it’s potentially not reversible. The hormone levels are concerning, so we will be doing a blood cancer test (Signatera) and an MRI to get eyes on the situation before doing anything else.
This all culminated into something unexpected: for the first time in 6 years, I don’t have a trip to Seattle scheduled. At all. Nothing on the books. It’s interesting to process that, since I have fantasized about it for all these years, but the circumstances aren’t necessarily what I would have chosen. But still, my future feels weirdly open-ended, no longer bound to the “Seattle trip cycle” that I’ve been on for 6 years.
Complicated feelings
The last few months in some ways from a health standpoint have been easier, but the residual unsuspecting villain of cancer treatment is that it steals your youth. Even on progesterone and my morning thyroids pill it’s getting me just the tip of the iceberg of my personality (some days more than others). A lot of days it feels like I’m functioning on autopilot, doing the next right thing, and like I don’t have enough gas in the tank for anything else. I especially don’t have enough energy to FEEL things...right? That can be the most taxing sometimes! It’s this constant battle to stay flexible, to stay open and vulnerable with God.
Some days, I just need to be ok with the feeling of “rowing” my way through life, just getting into a rhythm and hoping to make progress. I’m doing all the things I can, and the rest is up to God. I’m praying the wind will pick up and catch my sails!
I keep reminding myself that darkness doesn’t leave unless you shine a light on it:
There is no fear in love, but perfect love casts out fear.
For fear has to do with punishment, and whoever fears has not been perfected in love. 1 John 4:18
Fear is made absent by love. I can’t fixate on fear, worry and the what-ifs and expect to have peace. Peace comes when I focus on the One who loves me and is writing my story. For now, we’re looking into the giant question marks (why in tarnation is my estrogen sky-rocketed??) and looking to Christ as the light and love that casts out fear.
My prayer, that you could pray with me, is for humility and surrender, to continue entrusting myself to my maker and author. That my view of God would be so consuming that worry and fear flee. Put simply: That the beauty of the cross would cast its marvelous shadow over my life and that I’d take comfort there.