All righty, so we move on to part II of the journey through hell and back again, and unfortunately, the worst is still yet to come.
I left off with my parents and I just getting back to their house on Sunday night, March 24th, after the two most agonizing flights I have ever been on. That night I went straight to bed and everyone helped make me as comfortable as possible. I was finally sleeping on my wonderful memory foam mattress, instead of the hotel bed, so all of my pressure points were able to be relieved. I propped myself up on an abundance of pillows and elevated my feet on even more pillows to allow all of the fluid to hopefully continue to drain out of my feet and legs. Kristen and mom were an amazing help to squeeze as much fluid up as possible while dad helped get my things inside and organized enough so I could at least function. I set up the plethora of pills I was having to take around the clock to manage the pain and fight nausea, and we all went to bed thinking I was now finally going to be beginning the true healing process for real this time.
I slept fitfully that night but still rested more than I had been able to up until then. I was still fighting nausea pretty badly and having to take pills in the middle of the night on an empty stomach wasn’t helping, but I just couldn’t keep any food down long enough to be effective in helping with the medicine. Not to mention, I don’t remember the last time I slept through the night anyway. Seriously. I know as a kid I used to sleep and wake up feeling refreshed and like the night flew by because I slept all the way through, but I haven’t slept for a whole night in at least a decade, if not longer. Sad, I know. I started out going to the bathroom only once or twice a night when I very first became ill in middle school, but just before my surgery it wasn’t unusual for me to wake every hour of the night to use the restroom. But I had gotten used to that and now my body doesn’t even know how to sleep the whole night any more, and even though my colon was gone at this point, I still kept waking up and feeling like I was forgetting something because I wasn’t going to the bathroom all the time. But despite all that I did get a little rest the first night home and woke up hopeful of only feeling better and better.
The first day at home I decided to stay in bed all day long and let my body do whatever it needed. I would take my meds and make sure I drank enough but I wasn’t going to force myself to do anything. I figured my body would know if it needed to eat some or not and if I needed to nap or not and I was just going to listen to it. So I stayed in bed, drank a lot, ate a few Cheerios every now and then, and napped as I needed to. I did however need to go see my oncologist that day because since we had been away at Mayo, I was late for my monthly hormone suppressant shot for the breast cancer. I wasn’t feeling awful and I knew I needed to continue treatment for the cancer ASAP so I mustered all my strength, put Bryan’s life saving, baggy sweatpants back on, and off mom and I went to the doctor.
I was doing all right until a little ways into the drive when I suddenly began to ache all over and have a horrible pain in my lower back. We made it to the office and I was immediately taken back and put into a bed where I could lay and take the pressure off my abdomen. At first I felt better but the pain in my back started to get stronger and stronger. My doctor came in and we caught him up on Mayo and discussed how my treatment for the cancer would eventually resume, but by the end of the talk I couldn’t talk any more because my back was hurting so bad. We figured it was just pain from being tight from surgery and flying and all but I ended up needing morphine before we left and still had to get a huge intramuscular shot in my abdomen right above all of my fresh incisions and new ileostomy. Talk about ouch! But I made it through and was taken out to the car in a wheelchair and, once again, made it through the car ride home only by the grace of God and holding on to the fact that I was going back to my comfy bed where I could rest. And thank goodness, I had nowhere to go the next day so NOW I could really and truly, FINALLY rest and heal for real. And, once again, I could not have been more wrong.
I tried to eat before going to bed that night and after a few bites, the throwing up began in all it’s glory. I threw up into the night and ended up “sleeping” sitting up so I could try and keep whatever was left in me down. It made for a long night and the next day is when the badness really set in. I won’t bore you with all the details but basically, for the next two days, I felt like acid was always about to come up my throat, I could throw up on command, I couldn’t walk, I couldn’t eat, I couldn’t drink, I couldn’t get anything to get past going down my stomach, and I was beyond miserable. I couldn’t lay down but I couldn’t sit up. If I moved too much acid would bubble all in my belly but if I didn’t move enough I would get even more sore and achey all over. I didn’t leave upstairs for two days and my spirit was sinking lower by the minute.
I can truly say that those few days were the darkest days I have ever had in my life. I know the difference between happiness and joy and while I know I’m not always happy, I can honestly say that I always feel God’s joy with me. The joy of The Lord is my strength. That’s how I survive all I go through. (That’s my secret 🙂 ) But in those few days, I wasn’t sure I could feel God with me any more. And that scared me. This surgery was supposed to be my freedom. It was supposed to be my last step. After this surgery I was supposed to be free and unchained from the bathroom. I was supposed to have my life back so why was I stuck in bed, literally unable to do anything but breathe, when this was when I was supposed to be healed? I didn’t get it and I didn’t understand why it was happening. After years and years, I had finally come to accept that this surgery as a good thing for me to do and yet I felt almost as bad as I had ever felt before. What. Was. Going. On?!? Then by late afternoon on that Wednesday, my stoma stopped having any output. So no eating, no drinking, lots of puking, and no output. Things had gotten serious now and I knew in my heart that they weren’t going to get any better. So I packed my bags for the ER, the last place on earth I wanted to go, and back to the hospital we went.
By now, I was so exhausted and sick of being sick and I didn’t know how I was going to survive another stay in the hospital when I had just gotten out of one. I basically went into autopilot and decided to just survive moment by moment and surely I would turn a corner soon. Surely. That’s all I had to hold on to. Mom and Dad and I waited for just a few minutes before being taken back to a room in the ER at Baptist East but not before having at least two nurses say something about remembering me… You know you’ve had some rough times when you’re only 23 and the ER nurses recognize you when you walk in! Needless to say, while that wasn’t a big deal, it just felt like one more little dagger the enemy was using to drag me down even more.
I got up into the bed and mindlessly went through the whole routine of medical history, symptoms, list of current medications, and the rest of the registration process. Then the nurse came in to access my port so they could draw blood and get some fluids started since I was definitely dehydrated by now. I normally talk with all of my nurses, smile, joke, and am always happy. I always try to look at my situation as an opportunity to show God to others in spite of all I am going through and I have always been able to show my joy. But that day, I had nothing left in me to show. When I realized that, I knew there was for sure something big wrong. But, as God always does, He showed up for me just when I needed Him most. Turns out the nurse I had was a cancer survivor himself and as he worked on my labs and spoke encouragement to me, I could feel a small spark of joy come back into my heart and my spirit lifted, even if just the smallest bit. Praise God, for His timing is perfect.
After the nurse left, the doctor came in to examine me. He checked my abdomen and pressed around a little. He asked if I felt any pain where he was pushing on my left side and I said no. I mean I had just had surgery and had fresh incisions and all so yeah, I was sore, but I didn’t feel anything beyond what I thought would be normal. But he went ahead and ordered some morphine for pain and some nausea meds. Both were injected into my port and as soon as the morphine hit and I felt some relief of what I had been feeling for the past 3 days, I realized just how much pain I really was in and I knew that couldn’t mean anything good.
After the doctor examined me, he ordered a CT scan to look at my abdomen to see what exactly was going on so we waited for a while, eventually got a private room, and then I was taken back for the scan. After having a million MRI’s with all the cancer stuff, I was very happy to see the CT machine. (Although feeling like you’ve peed yourself whenever they inject the contrast is not the most pleasant of feelings! 🙂 ) Anyway, a few minutes in the machine, quite a few more minutes of waiting for the results, and then the doctor finally came back in with the big news.
Turns out I had a massive abscess of fluid all in the left side of my abdomens that had developed from the surgery. The big question though was why had it developed? Either I had an infection that had just somehow gotten in there while I was opened up or, worst case scenario, I had a leak in my small intestine that was causing the fluid build up. If the second were true that meant they would have to go back in for a second surgery so, of course, we immediately started praying that it was just an infection that could be drained and treated with antibiotics and, after looking at the scan longer, they decided it was probably just that. I had an infection.
So at least that explained why I was feeling so bad! I couldn’t keep anything down because my stomach was being compressed to half it’s normal size because of the abscess. Not to mention, this
massive abscess was also pinching nerves in my back, thus the back pain, and pushing on all of my organs that were already sensitive because of having just shifted to fill the void of space where my colon once was. Are you kidding me??? Really?? Right about now I just wanted to laugh and cry and completely spaz out! It seemed that just when I thought things were going to be better, the exact opposite would happen. Whatever rare, unusual complication there could be was, without fail, going to happen. And I know that’s not true but in the moment, when you are weak and tired, it is very hard to see beyond the moment you are in and the pain you are feeling.
After waiting a little longer we learned that there was no one at Baptist East that was comfortable with handling my case so I was going to be transferred downtown to University Hospital where I would see a colorectal team that was more experienced with cases similar to mine. So, after being loaded up on one bumpy, painful, late night, ambulance ride downtown, I settled in to my first room at University and learned that I would have to wait till morning before they could place the drain tube in my side to get rid of the abscess. Bryan was now on his way from Lexington since we knew this was going to be a longer stay than a quick visit to the ER and suddenly we all, once again, found ourselves in the all too similar scenario of the hospital environment…
Ok, don’t be mad, but surprise surprise, there is going to have to be a Part III to this story!! There is simply too much to tell and this post is already long enough. So wrap your mind around what I have so far and I’ll pick up again soon. And just wait, the worse of it is STILL yet to come and, as I continue to write all this down, I thank God more and more for being my strength and my sustainer. There is NO way I could have survived this except by His grace. To Him be the glory.