Lots of people have been asking me how I have been doing since my new port placement. I had a lot of conflicting feelings going into it. I tried to prepare myself, both mentally and physically for what was going to happen. But I don’t think even the most careful planning could have prepared me for what has happened.
I would like to start by saying that I will try to be brief but I also want to be honest. This was not something easy for me and I want to tell my story so that maybe someone who is going through something similar can take solace in the fact that someone else was unable to handle things with all the grace and strength that we often hear so much about. I feel sometimes I am betraying some sort of cancer law by losing my shit every now and then and maybe I am. But in case you are struggling too, you are not alone. To me, the important part of this post is at the end, so if ya skip, I won’t be mad.
The day of started off well. I had planned help with Eli a few days before so I felt pretty sure that he would be taken care of. I went in to get my levels checked so they could give me a transfusion if my platelets were below 50. They were 63. They have not been this high in YEARS. I was super suspicious. The nurses sent me down to radiology where they would be placing my port. *Flashback to November – They pulled my port of 8 years because they thought it was infected. Radiology alone could not get it out. They sent me down to surgery where they had to cut muscle that had formed around it.* From the moment I got there radiology had me creeped out. After some very shady medical preparation I went in.
When I came to after the procedure I was so relieved. Oddly enough, so were all of the nurses and doctors working my case. Not like in a “Glad to see you awake Ms. Daulton.” But more so in a “HOLY SHIT WE WERE SURE WE HAD LOST YOU!” One of the professionals, in my groggy state I don’t remember who, said as we rolled down to recovery, “Next time, make them do this in surgery. We were not ready.” I must have said something or shown some sort of panic because I remember her saying that she was going to give me something to calm me down and the next thing I remember I was in my bed at home.
My chest was so swollen it looked like I had tried to have a back ally boob implant and we got busted so they just left it in the top part of my chest. I was in SERIOUS PAIN. When I asked Noah for something for pain, that’s when I found out they had not given me anything for pain. So basically, they ripped open my chest, pushed in a golf ball and a tube, sewed me up, knew my platelets were at a level where I would be left black and blue for WEEKS, sent me home and told me “it will get better.”
When I called about a script for some sort of pain killer the lady told me “We put these in little old ladies all the time, and they don’t need pain killers.” Maybe they do. Maybe they don’t know to ask. Maybe their platelets are higher than mine. Maybe they don’t have to go to work. Maybe they have a care taker. Maybe they don’t have a 10 month old son who wants to be held by his mother. After many, many, MANY phone calls I finally called my oncologist. They are like the super hero’s of the medical world. They got me emergency appointment with a pain clinic. The pain doctor took one look and said “That look’s like it hurts.” I was like no shit Sherlock now give me some damn pain meds. And he did.
But now I am in a different kind of pain. One that is harder to talk about and almost invisible. It has been 8 year since I have had a port placed. My old port had been in by body so long it had recessed. You could hardly see it. I had forgotten how visible a new port was. I had forgotten how ugly and repulsive I felt when I first got my port. I feel people staring at it. And there is no simple answer that will allow you to give them a one sentence answer that will then allow you to move on. There are always more and more questions. And because of this strength clause in your cancer contract you can’t just tell people to fuck off. But at the end of your story they always tell you how lovely you are, how positive, or how strong you are. What they don’t see, is you crying in the bathroom after you have told that story for the 1000000000 (you get it) time. How you don’t want to hear yourself tell it any more because it is just a reminder of how it defines you instead of you defining it. One of my favorite things is when my doctors tell me how they will have to rewrite the books on PNH because of me. Because I beat the odds. I did something that surpassed medical expectations. That is one hell of an accomplishment. And it is hard to feel like someone who is someone to be reckoned with when you feel like a freak of nature.
Beyond that, it’s the simple things. Everyone has body issues. I have always battled my weight. I have this thing where when I smile my eyes close. I have a long torso and short legs. I have more scars on my body than Frankenstein’s monster. And now I have one more and a golf ball sticking out of my chest.
I will get past this. I will move on. Right now, it’s hard. I don’t need sympathy. I don’t need to be tip toed around. I just need time.
Flowers are nice, too.
But mostly time.