breakout

I have spent 6 weeks of 2021 in Hospitals and I am hoping that yesterday was my last long stay.

That’s right. 

This girl got discharged last night. 

Let me catch you up on on what happened and how I broke out of the hospital a week early. 

I was in a lot of pain last week and early this week. That is due to multiple issues affecting many areas of my body (a little too personal for this blog believe it or not). 

As a result I finally had to give into the pain meds. 

I have a love hate relationship with these, they don’t do a lot when you have cancer, they are extremely hard on your organs and your mind. For me, I go into extreme brain fog, it’s like I don’t have the ability to construct my own thoughts. I don’t feel myself on pain meds and unfortunately I am usually in too much pain to feel the high. But, it they do knock you out enough to go to sleep and get through the days that are just too much. This will limit your physical activity which throws your muscles into weakness and atrophy. Which then makes you not want to do anything. It is a vicious cycle. Eventually the oral pain meds stopped working and they moved me to a “PCA which is a little box attached to your IV with a button that administers pain medication on demand. You want pain medication? Hit the button! This is just about guaranteed to make sure you are drugged out of your mind enough to fall asleep and hit that button again when you wake up. At least that is what I used it for.

But then, a magical thing happened on Wednesday, my WHITE COUNTS WENT UP. This is very significant for me, these are cells in your body responsible for a ton of things, but most importantly they fight infections. This means all the ailments I was experiencing were about to get better and by Thursday I was even off the PCA. 

It is amazing how fast your body can start fighting infections, I thought I was going to be stuck with these symptoms for the next 7-10 days. On Thursday my conditions improved so much that they told me I could go home Friday evening. What a win! 

However, I am not home, my doctor requires me to stay within 1 hour of the hospital for the next 30 days. So Micah is taking the next month off of work to be my full time care taker—me with a care taker! Good luck buddy! You all know this is going to be hard to let someone take care of me, but, if there is anyone that can handle me with true grace it’s my Micah.

Over the next week I’ll outline how my my life different post transplant is and why you actually need a caretaker in the first place. 

So, for right now Micah and I are staying in Indy. He will have the responsibility of administering my medications, taking me to clinic 3 days a week and keeping me alive. Also keeping me out of sight! Since my immune system is more delicate than a baby’s I am not really allowed to go anywhere right now except the hospital. It’s too risky, if I catch a cold...all hell breaks lose and it’s considered a full blown emergency and I get admitted to the ER. 

I am so grateful to be out of the hospital and my matchbox of a room, like beyond grateful. Thank you to everyone who held me in their prayers, thoughts, and good vibes. I am truly in your debt. Thank you for being in my corner. 

 If I didn’t have to be such a freaking germ freak right now I would literally kiss the ground beneath my feet. And of course my brain has already covered up the traumas of the 3 week stay at IU and I have nearly forgotten all about it. I am just happy to be anywhere but there, the hospital is for healing but it sucks the life out of your soul. God, am I tired. Everything makes me tired, walking makes me tired, folding laundry makes me tired, holding a book makes me tired...watching Micah clean makes me tired. 

This is a different type of tired. It is a deep tired, almost like exhaustion but there is an intense fatigue. My calves are sore just from walking around the hospital and to the Condo yesterday (I feel like I was just running 30 miles). That is how fast your body can betray you. Real talk, I am so happy to out but I am so scared of what is ahead so I am trying to soak up every good moment I have. Making a cup of tea feels so significant, cooking lunch with with Micah seems thrilling, deciding what netflix movie to fight about tonight seems exiting! Take a moment and relish your small tasks, don’t let stress and business suck the significance out of your small things that you can love, or things that you once you loved. You know me, I move a thousand miles an hour. For me to be saying this...well, quite frankly it’s weird. But it’s one of those gems that are left over from pain that I don’t want to lose. The ability for small things to hold great joy and significance. If you move to fast you lose the chance to feel them.

The stage I am right now in the Bone Marrow Transplant process is“engraftment”. At this time all of my bone marrow has been wiped out and replaced with Makayla’s stem cells. This stage is when the stem cells are making a home in my body and learning how to make platelets, red blood cells and white blood cells (this happens during the first 30 days). Most of the side effects I have been experiencing and will continue to experience for the next couple weeks are from Chemotherapy. With my white counts up I am hoping the worst is behind me! But, two weeks from now is when Micah and I will have to look for Graft Vs Host Disease (GVHD) symptoms which is an entirely new barrel of tricks (more to come on this). This is a result of many different side effects and symptoms that can happen after a transplant that are a result of Makaylas stem cells producing Lymphocytes (which are good!) in my body that might “wake up” and realize that I am not her! That’s right, if these graft immune cells realize that they are not in Makayla’s body her immune system will start attacking myself and my organs. This can be mild, moderate, severe and or deadly. In fact a little bit of GVHD is not always a bad thing, in addition, studies have shown that transplants patients have a better results with a matched sibling. If there is any sibling I am most alike in this family it is Makayla after all. 

So here is to a new month of learning and growing with my favorite person, no responsibilities (except to live). There is so much that I know I am going to get out of the next 30 days. When do you just get to “pause” life? You don’t. Maybe we should more often...don’t get me wrong this thing scares the shit of me. But I have had a job since I was nine, I put myself through college working three jobs, then when I finished college I moved on to culinary school and then started my intense and long love affair with wine. It’s weird to have my only goal be to exist right now. Is that enough? It is extremely hard for me to find my value outside of my goals and accomplishments. I am always striving for the next thing. But now,  I have no agenda, no plan, nothing to learn, and for the first time in my life I am giving myself over to the process. The only thing I want to do is learn how to shuffle.