I haven’t written in a few weeks. It’s been harder than normal to find positivity in my life lately, which made writing cathartic for me but caustic to read. I’m still dealing with a lot of unresolved anger and grief over my condition and I have to work with the fact that some days are truly harder than others, physically speaking. All told, it’s lead to some dark days that were hard to get through. Thank god for my amazing family. Without my parents and my husband, I honestly think I would have lost my mind.
Since I last wrote, a lot has happened. My health has continued to deteriorate, my workload at work has only increased, and some of the worst news ever happened. One of my oldest, dearest friends got diagnosed with Acute Myelogenous Leukemia (AML). Being that him and I both turn 30 this year, and that AML is one of the eventualities that my doctors are trying my condition from progressing into, this just hit hard. AML is extremely rapid in developing and hard to get rid of. You also require a bone marrow transplant to achieve a true cure. So now, my best friend and I are on the walking similar paths to a bone marrow transplant together.
Trying to be positive for both of us is a struggle some days, when I just want to shout at the world ‘FUCK CANCER!‘ But I can’t. Because apparently, screaming and ranting in the middle of work gets you some odd looks. And possibly a one way trip to a long stay in the psychiatry ward of the hospital. Which is fine, but that isn’t what I want right now. Right now, I want to stay curled up on my bed, with my dog laying near me and listening to music. It’s stress-free, my husband comes to check on me every thirty minutes, and I feel warm, loved, and safe. My world feels pretty normal, if a little fuzzy.
If I move from my bed, it’s like someone hit ‘play’ on my life and all of the pain, fatigue, hair loss, frustration, and more come into focus with a startling clarity. And it’s incredibly overwhelming. Combined with the workload at the office, my emotional fabric has been looking pretty shoddy lately to be honest. As the fabulous Jonathan Van Ness once said, : ‘I
The side effects of my condition have been worsening. My hair is starting to thin out en mass, so taking a shower is fun. So is just living, as I shed over everything, like I’m a cat. My bone pain has been more intense lately and my feet and hands have started swelling/retaining water. The oral chemotherapy is causing massive cystic acne breakouts on my face, neck, back, and scalp. That shit is painful! I hate it because wearing makeup makes it worse, and I’ve spent over $1000 on products meant to help control it, and nothing works. My fatigue is so bad that is making it so I can’t sleep. I’m literally over tired, so I’m averaging roughly 4 hours a night. My appetite is taking a hit lately too, so I’m not really eating right.
And so it’s back to the doctors with more appointments, and more tests, and more blood work. I am so fucking sick and tired of being sick and tired. Though, on the plus side, I have been fully approved for a Stem Cell Transplant, and I have 9 FULL MATCHES!!! That’s incredibly amazing and uplifting, as it means I have fantastic options for the Stem Cell Transplant. I have to get a bone marrow biopsy in the upcoming days before I meet with the transplant doctor again to talk about scheduling. So while there is a light at the end of the tunnel, there’s still a lot to go through.
And so it’s back to the doctors with more appointments, and more tests, and more blood work. I am so fucking sick and tired of being sick and tired. Though, on the plus side, I have been fully approved for a Stem Cell Transplant, and I have 9 FULL MATCHES!!! That’s incredibly amazing and uplifting, as it means I have fantastic options for the Stem Cell Transplant. I have to get a bone marrow biopsy in the upcoming days before I meet with the transplant doctor again to talk about scheduling. So while there is a light at the end of the tunnel, there’s still a lot to go through. But I have a goal to work towards! I will beat this, and I have a fabulous support system. Things are bad some days, but I can deal with the bad days to get to the good days. Because that’s what worth it. Those are the ones worth living for. That’s what the best songs are written about.
So bring on the music.
It Takes Miles 