the This is Some Big Bullsh*t list

I’m not much of a complainer. On the scale of 0 to complains-a-lot I’m probably a 1 or a 2. I know that complaining doesn’t help anything, and just wastes time that could be spent fixing the problem I’m complaining about to begin with. So instead of complaining, my response usually is to just get stuff done. I rarely delegate, and usually find its quicker for me to fix the problem myself. Patience, lets say, is not my strongest quality.

I don’t think I’m complaining more now than I was before my diagnosis, but life certainly is different. I have a lot more now going on that is worthy of complaining about! My inner monologue says “This is Some BIG Bullsh*t” way more often than it used to. Usually, I’ll say it and move on, but I thought it might be helpful (for me) to just put it all out there. Over time some of these things may develop into their own posts because sometimes the way to fix SBBS is to talk more about it…but mostly this is a list of stuff that I can keep moving past now that I’ve put it all out there, and looked it in the eye.. or something? Make sense? Maybe not. So without further introduction:

This is Some Big Bullsh*t! (SBBS)

1. I have freaking Brain Cancer. If this isn’t something to complain about, I don’t know what is. This is the biggest of the BS.

1a. I have such a rare kind of brain cancer that the neuro-oncology teams disagree on what treatments I should pursue. How can I be the most compliant patient in the world if my doctors disagree? Setting aside my innate perfectionism– this is SBBS

2. My left leg, back, side body and upper arm are numb. They aren’t totally completely numb but very different from my right side, and this probably won’t change over time. But who cares – I can walk!! It’s true, however, sometimes at night I can’t tell if I’m touching my own leg or my husband’s… weird. ok, Moving on.

3. Having cancer is freaking expensive! I probably will talk more about this at some point– it is a very important topic. I HAVE insurance, and still– the expense of being sick is not insignificant. SBBS– Brain cancer should be enough to worry about.

3a. The process to get my medications, schedule my MRIs, make appointments– it is all so frustrating. I spend so much time on the phone making sure things are moving forward. For example– before my first chemo, I was prescribed a few anti-nausea medications. I called the pharmacy a few days after I knew the prescriptions were sent over, and I was told that the medications were not being approved by my insurance because it was too soon for a refill. Interesting– since this was the first time ever I was getting these medications. After calling my doctor’s office, my insurance, and the pharmacy 2 more times this issue was fixed and I was able to pick up the prescriptions. But what if I hadn’t called to get to the bottom of all of this? SBBS.

3b. Cancer clinic waiting rooms are sad places. SBBS.

4. Chemo in general is SBBS. Side effects for me have mostly been fatigue and constipation. I have to get weekly labs drawn. Each lab draw I have to fill out the same paperwork, supply my insurance card. SBBS!

5. When people know you have cancer they like to tell you every horrible medical story they know. No thanks. SBBS.

6. When people know you have cancer they share their opinions on being more healthy. I didn’t do anything unhealthy to get brain cancer– lets just be clear about that. That being said, I have changed my diet somewhat– there is some data that the ketogenic diet can slow brain tumor progression. So, until it is something I no longer can or no longer want to do– I’m eating all that butter. That’s right. All of it.

7. I have to teach my kids about cancer and brain tumors. This is seriously SBBS. I wish they didn’t need to know.

8. My friends and family are so sad because of what is happening. I’m so lucky to have a really amazing support system, but I hate seeing the sadness that this is inflicting on people. SBBS- screw you, Sadness– we’re going to have a party and you are not invited.

9. having to figure out in a split second how to answer the question “How’s your summer going?” Or “how are you?” from an acquaintance i don’t know too well and who has no idea what is going on…. Turns out there is no way to say brain cancer in a way that isn’t terrible. So I can start with “cancer” and work my way to the brain part… or just answer generically and keep moving. SBBS.

10. This mosquito won’t leave me alone!! SBBS!!!

Hrumph.

In all seriousness, I have a LOT more on the list of things that make me so happy, that I am so proud of, that I love SO much. There is so much love in my life. I have so much that I am grateful for. While I do my best not to let the things on the SBBS list drag me down, I am definitely pulled forward by the positive forces in my life. And I know I can turn each one of these SBBS situations upside down into something better. For example– that mosquito… I went inside ;).

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