This is probably my longest absence from the blog while conscious. I was going to write “while not in a life threatening situation” but that wouldn’t be true. The truth is that my mental health has deteriorated an amount that I have never experienced before.
Remember when I bought a new car a few months ago? Yeah, the weekend before that I was hospitalized for suicidal ideation. I am still working through all of the things that led to that point, and that have led me to today. Today I am okay. I am in therapy to address the trauma that has brought me to this point. I’m figuring out how to cope with this. I’m also figuring out what simply cannot be coped with, and how to let that go. Currently, I have next level memory loss. Like I can start a sentence and by the middle I don’t know what I’m talking about. I don’t remember most of my life. I can’t remember huge events that are unrelated to cancer, that happened years before. I can’t remember what I ate for breakfast. I can’t remember to do really simple things, like respond to a text or feed myself. It’s a trauma response, apparently.
But putting this experience on the internet? I mean, what if I do make it through all of this and have a career? How will talking about my mental health, my anger and sadness and anxiety, impact that future? I am not that concerned about professional repercussions right now (probably because I am young and reckless heh) but I do imagine being a doctor someday and having a patient find this blog. Everyone deals with this sort of thing so differently that I am bound to have different views of this experience than others. I don’t want to alienate people, make them feel like my way of coping is what I expect from them. I know that is a ridiculous “what if” but this blog is not that difficult to find and the internet is forever.
You might be thinking “But Brooke, you survived, aren’t you happy about that?” And the truth is not really, at least not right now. There’s something really maddening about being put through hell and then being told to be grateful for it.
I can’t explain all of my thoughts to you because they aren’t clear in my own head, but I can make a list of stuff I’m mad about:
- Charities that “help” cancer patients. I’ll leave this twitter thread here for explanation (click on the tweet and it will open the thread). I’m serious, please read this for some insight into “assistance” from charities:
- The “patient advocate” at CHO. I have been arguing with her about putting more ADA parking at the hospital because I can almost never find a spot and especially when I was so sick I literally felt like I was going to pass out trying to walk to the hospital. She told me she couldn’t fix it so I had to call the city. I don’t think she expected that I would, but I did. The city told me they would be HAPPY to install more ADA parking and would send a tech out to look at the spots and install signs/paint. All CHO had to do was call and request this. So I’m thinking great, this is easier than expected! I email the direct phone number of the person in charge of ADA parking in Oakland to the “patient advocate” but she doesn’t respond. A nurse pulls her into my room at clinic to chat with me and it was the most…defensive…experience. I was like, can’t you just call the number? And she’s going on about how there are ratios of ADA to non-ADA that I just don’t understand and I’m like but I talked to the guy in charge and he said differently? Did you call him? And she was like no. So I’m like can you call him? She never did. I did send her this follow up email and she apologized, but then didn’t respond when I asked if she had called the number lmao. I can only begin with all of the reasons why this upsets me: I have had to pay $9 3 times a week for years to get to my clinic appointments. ADA parking is free on the street but the five spaces in front of CHO are ALWAYS full. And while someone who doesn’t have a disability could park far away and walk, I don’t have that choice. I have an illness that requires that I go to the hospital, there is no ADA parking so I must pay, they are literally exploiting my illness for $$ I don’t have. Anyway, this was my original email to the “patient advocate” after she essentially came into my hospital room and told me my problems aren’t important (side note can we get her a new badge that says “patient crusher” instead of “patient advocate”):
You’re probably thinking no worries Brooke, just get a different patient advocate! She is the ONLY patient “advocate” at CHO. lol. “Advocate.”
- Plastic straw bans: Please read this.
- I saw UCSF hair clinic and as expected they had no solutions for me. So I’m considering shaving my head because I have tried everything and I HATE this knotted, matted mess on my head that literally serves no purpose and is not hair.
I am losing sight of the things that used to motivate me to get healthy again. I mean, I’m never gonna have hair or look normal. I am not excited to go back to school because no one I knew is even there anymore. I still have 15 lbs to lose from the 40 I gained with the scleroderma so I can’t wear any of my clothes. I haven’t felt human in about a year, since the scleroderma first appeared in September 2017.
In good news, my physical health is improving. Liver numbers are good, eyes are doing okay, skin is SLOWLY improving, prednisone is down to 30 mg every other day and holding, photo is not only once every 4 weeks. I’m moving back into Stanford Sept. 8. The most excitement I can muster is a monotone “yay.”
Here is a picture of my “improved” skin:
Oh yeah I also went on a trip to Monterey with my family and it was cute: