Friday, 9 October 2015

PHighter Friday: Rebecca

My health journey started a long time ago. 25 years ago, to be exact. I was three years old, and diagnosed with Stage 4 Embryonal Rhabdomyosarcoma. To summarize: Tumor in my abdomen. 5% chance of survival. The treatments I endured have long ago been deemed "inhumane, and no longer practiced on humans." I received experimental amounts of radiation, and chemotherapy. The doctors told my parents to expect long term side effects of said treatments, but were unsure what they might be.

Some side effects were: intestinal issues, weak teeth, extreme fatigue, infertility, and joint problems. I've lived my life in and out of hospitals, and doctors offices. I've had to become very in-tune with how my body is functioning.

Fast forward to April, 2015. I developed a case of bronchitis that just wouldn't go away, no matter the amount of antibiotics I took, or rest I got. I noticed that my heart was beating hard all of the time, and I was breathless walking from my living room to the bathroom. I couldn't speak a full sentence without gasping for breath. After months of different doctors, and tests, including a right heart cath, a new diagnosis entered my life. June 5th, 2015: Idiopathic Pulmonary Hypertension. My doctors can only assume it's from the radiation I got as a child. At the time of diagnosis, I was told I was at Stage 3. I was put on Sildenafil, Opsumit, and blood thinners within two days of my diagnosis. I had to quit my job-I had been a nanny for 6 years-because I couldn't even walk up a flight of stairs, let alone chase after kids.

I felt my entire world crumble beneath me. The first few days after the diagnosis, however, I felt relief. I was almost blissful. After months of doctors telling me I was fine, there was nothing wrong, it was in my head-one even told me that I should see a psychologist-it started to mess with my mind. "Was I fine?" I thought? "Is this just how people feel all the time, and I'm being whiny?" So to receive a diagnosis: I was happy. I threw myself into learning about this disease, it's outcome, the medications, the stories. But eventually google stops giving you answers you didn't already know, and the dust settles. In the weeks since I've been diagnosed, I've experienced sadness, anger, guilt, frustration, and fear. Sometimes all on a daily basis.

These days, I try my best to not panic or worry about the future. I spend my days with my cat, and baking. I've had to learn to allow myself to not rush projects, or cupcakes. But to take my time, rest often, rely on the help that people want to give. I'm only a few months out of the diagnosis phase, so I wholeheartedly believe that my health can only go up from here, now that I have an amazing doctor, and medications. I use oxygen only at night now, instead of 24/7, like at first. 
I joke that I've been given a "lemon" of a body. I feel as though the insides of me are barely held together somedays. And there are days where I think, it's impossible. It's impossible for one person to fight so hard, to endure so much, to receive blow after blow. But usually after a good nap, and an even better cry, and a hug from the world's most amazing husband, I brush myself off, and tell myself that tomorrow is a new day.

Pulmonary Hypertension may have been a stumbling block for me this year, but it won't slow me down forever.

I can be followed on Instagram at rlidenberg, or on my blog:

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