Tag: Treatment

The Invisible Fence

After my first round of treatment was completed I was finally able to come home. I remember being pushed outside in a wheelchair with tears in my eyes, just so thrilled to feel the crisp air on my face. When I left the hospital, I had a PICC line inserted in my right arm and a bag of medications to carry with the other. I took out all the orange pill bottles to see what they had been giving me in the hospital. I started to cry uncontrollably and I let out a scream that I had never heard myself make before. I felt so small, so weak.

Looking back on it now, I wasn’t feeling at all. I was going through the motions, just existing and not really living. I couldn’t process any actual feelings because the physical trauma had masked them. I was so exhausted, I had nothing left. I was on the other side of the fence and didn’t even know it yet. It took effort for me to even speak.

Two months later, I was still unable to work. My friends had decided to throw a fundraiser for me at my local pub to help pay for medical/living expenses. There are pictures of me on that day. I don’t see myself.

Making my way through the crowd of people, it was as if I was speaking about someone else. Seeing the head tilts and the sad looks over and over again. I was on that other side. The one needing help, not giving it. The one losing her job, not getting that promotion. The Sick one, not the “nothing can happen to me” one. The one with friendships pulling away because they are uncomfortable having a friend with chronic illness.

I must say however, that I am blessed to be on my side of the fence. I can say with absolute certainty that I am my most authentic self. That American Dream that everyone attempts to chase is just a disappearing horizon. Monetary success does not equal buying your way out of being sick. What matters is who is willing to meet you face to face at that barrier. Who is willing to just sit with you a while, until you are strong enough to Break it down.

Thank you to all of those who Choose to sit with ALL Fighting Warriors.

And to my Future Forever…

That fence around my Heart will come all the way down for You.

You just need to be willing to jump over it.

Not Going to Be A Walk in The Park

In order to see the light, we must first confront our darkness. For so long I struggled with writing down my thoughts because I was afraid of what might come out onto the pages. I wasn’t ready to share with others what this darkness had done to me, what it had taken from me. It all had happened so quickly. With the confirmed diagnoses of Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA), the googling was in full effect. My mind was racing with so many questions, but I remember barely being able to speak.

This was someone else’s life, not mine. Not now. Why now? Had I done something to bring this upon myself? Can I handle this?

My doctor had asked me about a healthcare directive. No, I didn’t have one. Oh, God… Why? Do I need one? Am I going to live? No time to sit and dwell on those questions now, my doctor had just explained to me a treatment to help with my Aplastic Anemia. It is an immunosuppressant called Antithymocyte Globulin (ATG), a treatment derived from horses. Yes, I said horses. Another alternative is derived from rabbits. “It’s Not Going to be a Walk in the Park” she said. That statement is now burned in my brain. No, it certainly was not a stroll in the breeze. It was more like a slow torture that dragged me on the floor and stood on my neck.

I had arrived at the U of M with my PICC line inserted into my right arm. I was on the Bone Marrow Transplant floor. This was to be my home for the next several days while I get this serum pumped through my body. The first night was brutal. As a precaution in the event of a reaction, this is NOT supposed to be administered at night and should be given at a slow rate of infusion. Of course, my treatment was given to me at night and at the highest speed.

I was in the middle of a sentence, and suddenly my body started to uncontrollably shake. I had rigors, low blood pressure, fever, vomiting, and night sweats. I was brought into the ICU because of all the reactions I was having to the medication. My platelets were lowered to just 5,000. Many patients actually respond well to this treatment with little to no side effects. I was faced with them all.

After I was released from the hospital, I was lethargic and could barely walk. A day later I had developed mouth sores all over my lips and inside of my mouth, down my throat. There I was, black and blue, puffy face from all the prednisone I was on. I was so weak. My mother had to practically carry me down the hallway to get to the car. I had to go back to the hospital, because my first experience wasn’t joyous enough. This was another reaction to the drug that could have been prevented. My purpose in sharing some of these not so pleasant details is not to scare you. It’s to show some of the physical demands on the body that many patients go through at one point or another. However, having a diagnosis is so much more than its physical features……