Counting my Spoons Before They are Hatched

So… Mike’s insurance company from his newer job called yesterday and told me that they have this special program where they will pull my cancer hospital into network. I was like “yay, whoa, that is super awesome because I have no idea how long we can figure out how to do this whole COBRA thing to keep my insurance, whether or not it is really going to make financial sense in the long run.” Having my secondary insurance pick up my hospital alleviates a lot of that stress.

The stipulation was that they had to be my primary insurance, which means I now kick them in at no money out of the deductible and max out of pocket (I maxed mine out ages ago). This also turns into an interesting conundrum when all of my approvals on medications and everything I am doing are approved with my other insurance and not this one.

Luckily I wasn’t actually having treatment today, my oncologist is taking time off for Thanksgiving, so I came to see her early with my infusion planned for Friday. So there is a moment to try to get stuff figured out. They had me meet with the financial help person at my hospital who had a response along the lines of “shut up, be grateful you have insurance you whiney #firstworldproblems biznitch” which was super unhelpful, since my medical team sent me to talk to him. If he wasn’t going to be a help, other than make me feel like a jerk, they could have saved me the trouble.

I told my oncologist about my horrid panic attack during brain radiation and my insistence that someone drug me really good next time I have to have radiation up there. Like REALLY good.

We then went over my chest pain episode. We can’t find anything clearly linking Affinitor to what happened and everything they could find suggested that what happened could have been fluke circumstance – so we want to try Affinitor again (pharmacists were in the room for the chatty McChat). I expressed my deep concern about what is going on in my brain, the additional spots that were growing and that I am super nervous ignoring that world. Due to this, my oncologist decided to go ahead and start me on Xeloda and Tykerb. I don’t WANT to go this route, but both of these medications are shown to cross the blood brain barrier and I am really hoping it cuts back on how many tumors start showing up up there. Slows them down… anything! Having stuff actively growing in my brain freaks me out the most and if we can really slow down growth before I get too much more going on up there I will feel good. I am very nervous about this decision (just like all cancer treatment decisions).

It doesn’t mean I may not have to get SRS done on the next 4 spots that were in the “maybe” pile after my MRI in January, but hopefully it slows down more from popping up in the “maybe to absolutely” new tumor pile. I also hope that the rest of my body behaves while we do this (the nervousness on changing regimen was that I would lose the stability in the rest of my body). I also give up my access to the drug Perjeta, pretty much forever, because that is how insurance works. Ain’t it grand?

I haven’t been feeling well and my markers keep on creeping. So changing therapy feels like the right course (I had blood drawn yesterday so I would have markers today and didn’t seem to have them again 🙁 ).

The “good” news is that this treatment is what they call oral chemo. Several pills I will take every day (11 to be exact). I will also keep my hair. As I don’t get Zometa infusions because of the whole ONJ thing, this means I will not be in the infusion chair for a bit.

It doesn’t come without its chemo-y side effects, but that is what it is. Some do better than others, we will see how it goes for me (one of those things you just don’t know until you try it out). Now we have to figure out what insurance company will approve and pay for what-when and where? In the meantime I may still get one more Herceptin/Perjeta infusion while we wait for the Xeloda/Tykerb to get filled.

Last night I read a discussion that The Bloggess has in her book Furiously Happy (that is an affiliate link, if you buy the book I get a couple of cents) about spoons and illnesses. I have been reading her books the last few weeks. They make me smile, chuckle and belly laugh. They have been entertaining me as I try to sail through this rough patch. I also go back and forth through bouts of insomnia and bouts of nonstop sleeping for a full day, so a book to read is helpful.

Jenny wrote about a discussion she had had with a friend about her spoon theory, I am assuming the friend was Christine from based on an internet search, as Christine has the spoon theory listed on her site. The theory goes like this:


Dante tests my patience, and steals spoons sometimes, but he is so cute.

Healthy people, especially young people have an endless supply of spoons. An endless amount of energy to do whatever they want in the day. When you are sick, you have a limited number of spoons each day. Each task in the day costs you a spoon. Waking up, there goes a spoon. Showering, goodbye to another spoon. Putting your clothes on, spoon. Exercising, bon voyage spoon… visiting a friend, one more spoon. You could borrow against tomorrow’s spoons, but tomorrow you would have less spoons and you would start out with less you could do that day. Tomorrow you may wake up sick and have even less spoons than you anticipated and now have to get around the day with your extra depleted land of spoons.

When you have cancer, are in chemo, or any kind of cancer treatment, the fatigue can give you days where you barely have any spoons (like maybe three spoons). Waking up and putting on your clothes is exhausting, let alone doing much else. You have to consciously make choices each day about where you are going to spend your spoons. This means that you also consciously decide where not to waste your spoons (you have to make choices about what are your priorities based on how many spoons you have that day/week). In chemo you learn what days in your cycle are your four spoon days and what days are going to be your twelve spoon days and try to plan carefully around that.

This is why sick people appreciate help with certain tasks. The more spoons you help them not have to use up, the more spoons they can use on things they enjoy. 🙂

Thus my world is revolved around spoons. My fatigue lately has left me with a very low number of spoons, and I am actually hoping that chemo gives me more spoons on some days than I have right now (knowing there will be days where I won’t have hardly any spoons). I am gambling my spoons away for a brighter spoon future.

Also, figuring out insurance, social security and other financial matters is using up a lot of my spoons… I can’t wait until I don’t waste hours every week talking to people on the phone about all of this stuff. It makes me tired, literally and figuratively. 🙂

Here is am image I found explaining spoon theory also (made by I couldn’t locate the original source site/link):


Author: Mandi

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