Chemo day 4.

10:01 PM


A blogger's beginning

So I got excited for a minute about this concept of writing letters on a newish platform and offering you the option of subscriring to my letter via email. Cause that's how this platform works and I like the idea of sending letters to those who wish to stay in the loop. I came up with this title for my letters: Letters about living a loving and feminist life in this mesmerizing world with stage IV breast cancer.

But then I started writing and discovered that I'd only be able to publish 297 letters per post. So I gave up right then and returned to my blog with new inspiration. Cause I'm already on Twitter and Instagram and Facebook (and I don't get Snap at all, although my 16-year-old promised to guide me) and I don't like limitations. I want some free rambling for once.

Seriously, I already have this space that I'm not making the most out of because I am great at self-censorship. On a day like today I feel that I do want to leave traces of the shittiest times in my life. Not just the glorious moments, although they are deserving of space too. I do want to talk about the tiny details and the bad things as well as the beauty I find in life. And this is the space for it. Because can I separate the artist-me and the cancer-me, the mother-me, the feminist, the activist, the editor, the fashion enthusiast, the movie-lover and the reader and what ever else into little niches? Not really. Is there any point to try this compartmentalizing even though Vogue just made this letter platform sound like a shiny new option of talking to a willing audience... (and there's this thrill that comes with starting a new digital platform, a strange promising new beginning).

No, really though. It's time I just talk to you about what ever is happening. The hospital stuff, the music stuff and why not the university stuff too? The fact that I'm writing a PhD (ON BLOGGING...). I'm not just writing songs people, I'm writing a book. And I'm generally doing A LOT while life is trying to throw some heavy obstacles in my path. This all is important in some way to share. It may be a way to keep people close and far up to date about my life, as currently I am struggling to answer all the lovely messages and concerned notes I am receiving.

Yes, enough with the disconnections and the construction of silences and the compartmentalizing.
Hello, it's me. To quote some amazing singers.



About Today

 I made my way to my fourth chemo in one and a half months. This time I went alone, because I had been too unwilling to take care of getting someone to go with me. Later I cried to Nick (my partner) about this fact, even though I had plenty of time to sort this out and he offered to come with me this morning. But you see, the weeks in between chemo (two weeks) I have begun to live my life trying not to dwell on cancer. So it means I'm pretty dysfunctional with organizing people to come with me and so on. There is so much to organize all the time regarding treatments, care for our child, doing shows and working. 

Also, my ideas about my ability to cope are pretty unreliable or changeable at this point. I WANT to cope amazingly, but I really do need people – sometimes more than I have the energy to express. The presence of loved-ones just lifts me up. When there is a friend with you in chemo, there's laughter. Today I had virtual friends though.

Everything went fine at the hospital. It is a short tram ride (or a walk in better shape) from our home. I had my Ipad and my phone and my headphones. I watched the wise and amazing Angela Davis talking with the lovely and wise Toni Morrison about libraries and liberty. I started a documentary on NASA and the space shuttle programs, I tried to continue two pretty bad movies that I had left unwatched. I tried to type up FB posts that would describe the lows and the difficulty of this illness instead of offering false tranquility or happiness. I basically managed to not fall into tedious discussions with the other patients (95% of the time they are about 30 to 50 years older than me and I find this difficult emotionally).

I also managed to get through the infusions, although I could not fully concentrate on the programs I was trying to engage with. The infusions make me both extremely sleepy and fidgety at the same time. Also, there is a lot of commotion in the room (where four patients are treated at the same time by just one nurse and zero privacy) and I needed to constantly stop my videos in order to talk with the nurse about practical stuff, side-effects and future treatments. Let me just say, she was genuinely surprised that I had played three shows in the last two weeks. My hemoglobin is starting to be very very low (like hello blood transfer in the next couple of weeks) and that obviously made her wonder how I can sing through a 1 hour show while also playing! Well, I told her it is my life-line. 


Last week a friend surprised me with these.
My favorite flowers.Today they moved to my bedside
As I can see now, 298 characters just isn't enough for me. This is a monster of a blog post now, forgive me. I'll attempt to write more this week. I want to say hello from the week of lying in bed and finding ways to rest, while keeping my mind busy so I don't fall so deep into the chemo week blues.
Things I'm bad at: resting, being weak, being ill, expressing myself while any of those things. But I'm trying to change this now.

Sometimes I write to make sense of things. To make myself feel better and to locate myself among the crisscrossing emotions, thoughts, inspiration, aspiration, depression and knowledge. I always write with this motivation. Writing is making sense and making things real for me. So, even though I may come off as sussed, calm and gathered about what I am going through, partly this way of talking and writing is my way of creating the possibility of getting through each day. Because I am not sussed or internally calm. I don't want to die, that's how I am. 


Usually I do this writing in my private journals that no one reads. The ones that I am now thinking about with the knowledge that my death is closer rather than a thing of a distant future. I think of what I leave behind. An archive, a legacy of words and music. Is it valuable? Do I want it to remain here after me? Who do I want to take care of it if it stays here past my time? I think of these thoughts and I suddenly feel that it is important to communicate in public now. To hold no bars or create barriers. To write now. Imperfect, unfinished, wrong, fragmented and dreaming – always dreaming and seeing beauty. 


I'll write more soon. Now that I don't have to be perfect first. 


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