Hiding Under a Rock

I imagine there are a few people who have been wondering where I have been hiding (under a rock, the answer is under a rock). Utah is full of rocks, ahem mountains, and for the last bit I haveĀ just been adjusting to what my life looks like right now (new chemotherapy regimens, spending time with the family and that whole rock thing). I know people fret, but there is no need to message me if the blog isn’t updated. I promise I will get around to it eventually, and if the other thing happens (ahem, death šŸ™ Ā ), that will be updated here too.

This is the first body chemotherapy that I have been given that is normally cycled weekly (seems strange considering, but it is true). My oncologist intended to treat me with two weeks on, one week off and so-on. When they had made a small error and booked me for chemo for every week I asked if we could try it out (I must really like pain, or feeling like ass, or both?). When they checked my labs I was not eligible for chemo the 3rd week. I had never had this experience either! Wha, labs kicked me out of the chemo club. Imagine my surprise when they were still not suitable the following week when I was supposed to start the next cycle!

I tried to not get too depressed. Labs are labs and my body has been through a lot. We had some data now, but it also meant that I couldn’t start Affinitor, which was on the plan based on my Foundation One tests and a study that the pharmaceutical team had found. No immune system, no combo therapy (this isn’t an extreme route of combo therapy, but it was blocking one more route that my cancer could grow) – thus maybe dragging out the time I could be on Navelbine (a.k.a. Navy Beans, someone told me that and now I refer to it as Navy Beans, I like Navy Beans, so that works right?).

We spent this past weekend with my family in a vacation rental/cabin that could fit us (both of my parents and their significant others came, still nice that they get along well enough to allow for memory making without no stinking drama)! It was nice spending time with everyone (including my nieces and nephew). I had the weekend planned out, butĀ I didn’t feel as well as I had thought I would. We didn’t bring my oxygen machine because Mike’s back and neck were sore, I thought I would be ok without it, turns out I spent the whole weekend coughing, which made my lungs REALLY sore and me super tired. Lesson learned – I need to make sure I have an portable overnight solution.

My oxygen company is giving me some weird rental thing (am I renting the one I have? I thought insurance was paying for it, maybe that is renting?). I had to hop off of the call from the lady after she FINALLY called me because the gentleman was here to look at our drain backup damage to work with our insurance company on what we needed to do to fix it (I guess not using the drain while we were gone made it back up, but it didn’t help that it turned out to be INSIDE OF A WALL!?!). The gentleman was very helpful, but the lady didn’t call me back in 20 minutes like I asked her to *&%%#$% needless to say, I may just get the stuff from a different company. 3rd strike for this company.

I may need to figure out something for camping that works better too. If I have to rent equipment if I want to leave the house? Well… I guess the big machine can fit in the RV (more points for the RV), but getting it in there will be fun… My bottles only last 2 hours, but they are light enough for me to cart around, maybe I need to get bigger ones. Haha. Me thinking out loud on the blog today…. Bottles don’t work for plane travel though. Wonder if I am going to have to break down and BUY a portable concentrator (some are not acceptable for sleep too, which is when I need it the most). Stupid lungs.

My fluid in my left lung seems to be drying up, or it is hiding from the drain process. My right lung hurts – so it is building up or doing something (or that is what my liver feels like?). I sent a note, I don’t know if the plan is to let the poor lung die off in the long run (OMG that scares me). They are going to schedule to look at it one way or another next week based on the response I just got (much relief, they will drain it if needed). I am seeing a trillion doctors all in one day next week, going to be a long one! Pulmonologist, palliative care, get my labs done to see how my body is doing after all of this Nuepogen to get my immune system less sad (we are also trying to figure out how I can get set up to do the shots at home, that meant 5 extra days at the hospital, BUT, I will do it if that is what it takes) and my intrathecal chemo needs to get shot into ma’brains.

I have also been working on my Advance Healthcare PlanningĀ and Advanced Directive (different by state). I have been putting this stuff off for a million years and now I just need to stop it.

The exciting news over the past few weeks was that my tumor markers had dropped by about 160 points. It has pretty much been a year since they have dropped (I had a teensy drop from Kadcyla at one point, but not enough to write home about since it didn’t stay with me long – although I still probably wrote home). I try not to cling too much to it, it is my constant pessimist (easier to be pleasantly surprised than perpetually saddened).

A tropical trip has been booked, now if only ourĀ house will stop falling apart we should be able to go.


My family painted mini-paintings together. I did a Starry Starry mini-canvas.

This week my friend recently lost her husband unexpectedly. Shortly after they had just packed up and abandoned me for the beautiful city of Seattle (you can’t really call that abandonment). If you have some love to spare, she has two young children (one is 11 months, he went camping with us at Lake Powell when we was just a tiny little baby in over 100 degree temps! It wasn’t even his first camping trip!). If you are interested in helping out, the Go Fund Me can be located here.

Author: Mandi

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