Just Getting The Hang of It

Part VIII

For my transplant I had to go to Cedar-Sinai in Beverly Hills. Why? Because of stupid ass insurance. They would not pay for CHOC to do it so they sent me to Cedar-Sinai. In Beverly Hills. Los Angeles County. Didn't they say I couldn't go to Millers because it wasn't in my county? Now I have to go to a hospital in L.A County, but is two hellish hours away from my home? Yeah, unhappy was putting it lightly. I hated this moving around hospitals and I don't understand why they denied CHOC. A lot of good that did me, so thanks.

Anyways. Let me just first say God blessed me, giving me two sisters who were perfect matches. My little sister, Susana, wanted to be the donor. She wanted to help me in anyway possible and how better than to potentially save my life. So everything was arranged and I did my transplant on November 22, 2016.

Transplant itself was really anticlimactic. It's basically a blood transfusion. Only free flow with no pump. The days after were terrible. I was away from home. Isolated. I had visitors come from time to time, but it wasn't easy. My family lived two hours away, traffic in L.A is terrible, my parents work most days and they had to take care of my other siblings by making sure there was food. Loneliness ran deep during that time. I cried to myself often because it was hard staring at walls, walking around empty halls, feeling like crap most days. The few weeks after transplant got hard with side effects.

I had such bad mucositis that I woke up feeling something in my mouth, that when I grabbed it and pulled it out it was a strip of my gum that had come off. It got hard to eat, chew and swallow. It felt like shards of glass. I couldn't swallow my own saliva and I had to use this suction tube. It was also hard to speak. I also had a day where I was so exhausted I slept the entire day. That's never happened to me before. Each day was harder and lonelier. Listening to music helped make me feel better. In particular "Yesterday" from Marianas Trench. Helped me remember that tomorrow, today will be yesterday. All a day at a time. I also had my faithful Nintendo DS and some books. It was rough, but I made it. I was home for the holidays and that made all the difference.

The passing months consisted in appointments twice a week, sometimes more. The medicine I was on gave me a hard time with potassium. I was on medicine to bring my levels down along with drinking 5-6 16 ounce water bottles a day. Nothing helped. I was frustrated and I would cry. I had no control, just like when I had to give myself insulin because the steroids raised my blood sugar.

Now my experience at Cedar-Sinai sucked and I hated being in that hospital. I hated it because it was lonely, but also because the staff was slow. Don't get me wrong, I understand there is only so many nurses and a lot of patients, but it really shouldn't take my nurse's CA over an hour to answer my call to empty out my hat in the bathroom so I could use it. It was a nightmare. I also had to wait up to an hour to get pain medication. Now if you know me you know I don't like to take pain killers. The heavy ones at least. I don't like how they make me feel. I prefer to just go through the pain. I also have this fear of getting addicted. Now continuing. I don't like to use pain killers unless it absolutely fucking hurts, and I was fucking hurting. Waiting an hour for relief sucks.

I hated driving up to Cedars. Having to get up at 5 in the morning, just to make sure we beat traffic and got there on time. I hated that they used the same vein every time for labs. I hated that the environment for adults vs pediatrics was so different. I was once in their outpatient infusion center and I took my premeds. One pill got stuck in my throat and I started choking. I was banging my chest, coughing, gagging trying to dislodge the pill while the nurse just stood there and stared. My mom was looking at her with a face that read aren't you going to help her? When I dislodged the pill and drank some water the nurse said "Yeah, you probably should take those one at a time next time." Well no shit, nurse. Thanks for that solid advice. I swear I never want to be at Cedars again.

Despite the terrible experience I did like my doctor. I liked my nurses in the hospital. The clean up crew there was also nice to chit chat with while they cleaned the room. There was good in every bad.

Before I knew it I had my 3 month bone marrow biopsy. It had come back negative. I was elated. My doctor on the other hand was smart enough and had the sense to ask for a spinal tap given my history of CNS relapses. I did my lumbar puncture and it was positive. I had relapsed again. The doctor told me there was nothing much they could do for me so they were sending me back to CHOC because pediatrics had better protocols in dealing with CNS relapses. This news was devastating. Could you imagine what it feels like to have to call your mom and dad and tell them you relapsed AGAIN? To hear and watch their hearts break all over again. To feel raw disappointment in yourself for doing this, for failing, again, even though logically you know it's not your fault.

My sister took it rough as well. I know that she knows it's not her fault, but she can't help, but emotionally feel that way. Susana, if you ever read this know that no it was not your fault and you know it. Know that I love you and thank you for giving me an opportunity to live because you donated your bone marrow. You did save my life. Like I always tell you, you have a heart of gold. I'm so happy and proud of you and being your older sister is one of life's and God's greatest blessings. Never forget that you are kind, funny, beautiful, smart and super important.

I want to thank Margarita who was my case manager at Cedar-Sinai. She was wonderful and helped things run smoothly. Also I wanna thank Dr. Yuliya Linhares. She was a great doctor. Also Sara Cooper my nurse practitioner at Cedar-Sinai. Shout out to the resident who let me borrow his video games to pass the time.