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When you've been sick for a while like I have, the days tend to run together. I used to know what day of the week it was automatically without having to think about it. My class schedule alone made sure every moment of every day was carefully allotted to study time, eating, class time, catching up with friends and... oh yeah, catching a few winks of sleep as time allowed. I always knew what day it was, what time it was and how long I had until I needed to be at my next activity. These days, if you were to ask what day it was, I'd have to think for a minute. I'd have to think how many days it had been since I'd been to the hospital or how many more days it was until I'd be going again. I go to the hospital every Tuesday and every Tuesday is the same... well, not exactly the same sometimes we have more procedures added or more doctors to see or an allergic reaction to some medication that I couldn't possibly have an allergy to or a myriad of other circumstances that could happen. Tuesdays are the day that my whole 'schedule' revolve around - it's how I measure my weeks. I have to get my medi-port accessed and hep-locked once a month - that's how I measure my months. I measure my hours by my many medication times - well, you get the point. So I'd like to share with you my Tuesdays. Going to the hospital is not a scary thing for me - don't get me wrong, at the beginning it was terrifying - but now I'm used to it and it is a place I know well. When we arrive at the hospital, our same friendly volunteer is there to meet me with a smile and a wheelchair - this kind, elderly man talks to us and treats us like family and proudly tells people that I am his favorite patient. As we pass people on our way up to the oncology clinic, the other volunteers wave and smile at me and ask how I am - I think I'm as much a part of their Tuesday as they are a part of mine. When we get to the clinic we are greeted by the familiar faces of nurses, doctors and other patients. The staff is like family, they genuinely care about me beyond just the medical; they cry with us over bad news, hold my hand when I'm going through a particularly painful procedure, laugh with us, they hug me when they see me, and they also share a part of themselves with me. This is my normal and I love these people. I think you'd be surprised by how many smiles you see in what most would consider a somber place. The nurse comes out and calls my name and as we head back to my treatment room she asks about my weekend or tells me how cute my outfit is. Once we are in the room she comes back in to take my blood to see how my counts are. She pricks my finger - it's definitely more than a pin prick, it's more like a tiny knife - and then squeezes it in order to fill the three tubes of blood. It hurts a little bit but I'm pretty used to it by now.
Next I had an EKG to test my QT interval on my heart to make sure that the level of medicine that I'm on is okay. The Palliative Care team is in charge of all my pain medications and they want to make sure that the level I'm on is safe for my heart. Thankfully, the Heart Center has a mobile EKG machine that they bring over to clinic so I don't have to make an additional trip to the Heart Center. The technician that came over to do my EKG was very sweet and that always makes the tests go smoother. My Palliative Doctor came over to see me in the clinic to tell me that my QT interval was okay, not great , but it was right under the 'too high' mark. My Palliative doctors are some of the most beautiful souls that you have ever met. I love seeing them - they talk to me about my personal life and they are never in a hurry and they also keep my pain under control. They are a huge blessing in my life. They help me to be able to do the things that I want to do while keeping my pain under control.
Next the Picc Team comes in to change the dressing on my pic line. The nurses that do this job have become like family over the past year and some odd months since they placed my picc line in my arm which allows me to receive the IV medication that I need. The placement of my pic line was very painful and it took a couple of tries for them to get it in because of how shot my veins are after all these years. The first few times they came I was fearful, but now I love to see them and talk with them - they are wonderful.
This is an everyday reality for most pediatric oncology patients, and oftentimes I think it is overlooked what we go through on a normal basis - when we get admitted or there is something major the people in our 'support systems' rush to support us and for that we are grateful, but these same people tend to fade away to their own lives and don't realize that we're still going through hard things. We quietly go on, going to our appointments, taking our medications and struggling to keep a sense of normalcy in our lives. I would encourage you to reach out to that mother whose son passed a few months ago - she needs you more now than she did at the funeral, or to that person who is going through cancer treatment and now feels alone and that life has went on without them - they need you now as much as they did when they were diagnosed, or to... you get the idea, look around for the hurting and be that helping hand. God does not call us to be islands, only engrossed in our own lives and ignorant to the world around us. He wants us to be His hands and feet to those around us. So look up from your daily grind and see those around you - everyone is hurting in some way. I know that sometimes I can have a well - their - suffering - isn't - as - bad - as - mine - what - are - they - complaining - about attitude and I know that isn't right. Their suffering may not be the same as mine but nevertheless it is still suffering. Rest in Jesus' arms, my friend. He is with you always and loves you more than you know.
My nurse then comes in to change the cap on my central line. They do this to keep infections from entering my body through this line. This is usually the last procedure of the day before we leave to head home for another week. There's always a feeling of accomplishment when we are finished with another Tuesday.