Before I begin, I want to thank you all for your patience and hanging in there with me as I have slowly and painstakingly put my story into words. It has been more of a process than I had anticipated but it has certainly been well worth it and I’m glad I have. I also want to say that seeing as I am just starting out on this post, I am going to try to make this the last leg of a trilogy but, if it turns into something longer… then just hang in there with me folks! I’ll get there one of these days 🙂
We left off with Dad, Mom, and I sitting in a hospital room at University Hospital after just having made the ambulance ride over from Baptist East ER. Bryan was on his way from Lexington where he had been back in class for the week and we were waiting to see when the doctors were going to be able to place the tube to drain the massive abscess in my left side.
It was probably about midnight at this point and even though I was on some pain meds, I was still brilliant enough to be able to come to the agonizing conclusion that I was going to have to wait the entire night through before I would be seen by anyone. As you might have guessed, I was thrilled by this realization and it did wonders for my morale… not. I did, however, feel a little better once a nurse came in and told us that we would be moving shortly to a new room which had just been recently renovated and was much more comfortable than the matchbox of a room we were currently in. And of course when she said “shortly” she meant 3 hours later, but in that time Bryan had arrived and I was much better off since I hadn’t seen him since we said goodbye at the hotel in Rochester before he left for the airport.
(Side Note: Bryan and I have been married for a bit over 2 years now but I still get butterflies when he walks in the room. And, for some reason, when we have been apart for a while and are then reunited, I still am amazed when I feel him hold me up. No, not literally hold me up but that moment when I start to breathe easier, my shoulders relax, and I am able to rest in him knowing he is one with me, he often knows what I need just by looking in my eyes, and there is a peace I feel because I know I am safe with him. That might all just sound mushy gushy to you but it is huge for me. For years and years as I walked through my health stuff, my parents were the only ones who had any idea what I battled on a daily basis. Not even my closest friends knew because I didn’t tell anyone. It was easier to handle things if I did it myself because, well I knew I could always count on me. And because of the nature of what I dealt with, I didn’t even let my mom help me carry things maybe as much as I should have. I didn’t know any of that was there though until Bryan and I got married and we began to feel a distance between us. I was still taking care of me and I didn’t need anyone else, and when Bryan tried to help, I felt too vulnerable and pushed him away for a long time. And boy did I not know what I was missing out on! When I finally learned how to share my burdens with Bryan, my life became infinitely better. I thought I had perfected my ways and had become as efficient at dealing with my stuff as possible but then, enter Bryan, and suddenly my burden was only half as light and I wished I had let him support me sooner. (Side note of a Side Note: What a beautiful personification of our relationship with Jesus that is! Sure, you know you have junk that can be hard to deal with and sure, you know Jesus is there to help you but hey, you got this. You’ve been handling you for a long time now and you know how to do it so you’ll just continue on in your wise ways. NO! Jesus says his “yolk is easy and his burden is light” so whatever it is and however good you think you are handling it, you don’t know what you’re missing out on! But that’s a different sermon and I’m not even preaching anyway 🙂 So, I was happy to see my husband. Back to the story…)
Now it is 3:00 a.m., we just got to my new room, which was considerably bigger with a couch and chairs, and it was time to settle in for a few hours until the doctors started making their rounds in the early morning. We were told that a doctor from the colorectal surgical team would come see me and tell me when I was going to go to get a drain tube placed in my side that would be connected to a bag and would allow all of the infected fluid to flow out of my body and rid me off that nasty abscess. We met my nurse and the techs and then settled in to try and get at least a couple hours rest before the big day began.
I just realized one minor, yet, extremely inconvenient detail of the story. It’s not much; but it sure made this part of the story much more difficult for me to get through. As you may recall, I threw up right before deciding that it was time to go to the ER right? After that I felt decent and decided not to eat or drink anything else for fear of becoming nauseous again. Then we got to the ER and, as they usually do, they asked that I not eat or drink anything until they knew what kind of testing I was to undergo. That was about 4:00 p.m. then that I last felt the sweetness of water cross my lips and it was now 5:00 that next morning and the only thing I was allowed to have to sate my pallet was a gross, minty sponge on a stick that I could dip in some water and suck on for a second… unbelievably frustrating. Every time the nurse turned around I was SO tempted to chug that little plastic cup of water but I got a hold of myself and pushed through. There was no way I wanted to delay this procedure or this hospital stay any longer than necessary. Still, a truly parched mouth is just awful and until you’ve ever experienced it, you don’t even know.
Around 8:00 or so, one of the doctors from the colorectal team came by and told us I would be going shortly to have the drain placed. It would be a CT guided procedure, and, once it was over, I would get several X-rays to see if everything was placed properly. Transport came and took me downstairs where I talked with the doctor who would be placing the drain and answered a few standard questions. He was sweet and kept trying to reassure me that it wouldn’t hurt too bad and that I probably wouldn’t even remember it because of the medicine. In my head I was just laughing thinking, “If this guy knew all I’d been through he wouldn’t even bother trying to comfort me.” So I looked at him, smiled and said, “I’ve had ribs pop out, a bone biopsy, and survived chemotherapy. If you could just get me one of those sponge-on-a-stick-things I think I’ll be ok.” Now, if you know me at all, you know that, yes, I might normally be thinking something like that but I would never say that! So, you know how miserable I must have been that it just flowed right out of my mouth. Look out people, I had lost my filter.
Luckily, after I got my sponge on a stick, I was very painfully moved onto the CT table but given Versed, so my lack of a verbal filter didn’t matter so much. The last thing I remember is the nurse asking me to raise my left arm above my head and after that I woke up in my bed in a hallway.
It felt like as soon as I opened my eyes they were whisking me off to the X-ray room and pushing me onto another table. I was becoming more alert by the moment and each moment brought with it more and more pain. I was now fully aware of the fresh incision in my left side to go along with the still sore incisions in my lower abdomen. And, as every tech asked me to hold myself up for this X-ray, sit up real still for one more shot, take a deep breath, hold your breath… I just wanted to yell at those people, “Helloooo!! I just had a major surgery that I haven’t even come close to recovering from, AND I just now got out of another minor surgery, AND I still have a massive abscess in my side! YOU hold YOUR breath!!” But, it seems my filter had found its way back and I kept my mouth shut, hoping to get through the X-rays and back to my room as quickly as possible.
Once back in the room, they set me up on a morphine pump and when it eventually caught up with the pain, I had a rather uneventful rest of the day and got a small bit of sleep. The next day, Friday, was day 3 in the hospital and day 2 after surgery. There are many things I could say about this day, bizarre interactions with our nurse (who we now refer to as Cowboy Tom—come ask me and I’ll give that story a tell), lack of communication from any doctor, learning how to function in the one hospital in Louisville I’ve never been in, and a whole lot more. By the end of the day we felt like we were in the Twilight Zone and that’s never good. I won’t go on and on with all the details, but our experience so far was pretty awful and it was quickly going downhill. At least I had felt all right that day compared to how I had been feeling. And as they checked the bag connected to my side, we found out I was feeling better because they had drained 2 LITERS and counting of infectious fluid from the abscess!!! 2 liters, as in a 2 liter of Coke… holy cannoli. Now I’m not saying I’m the world’s smallest woman but I’m not a very big person, and to think I had 2 liters of anything in my stomach was a bit disconcerting!! I was just glad it was gone and now I could get better… Yup. You guessed it. Once again, I could not have EVER been more wrong.
Day 3 ended and as Bryan and I settled in for the night I was feeling pretty good about where I was. I wasn’t on the morphine pump any more, I was keeping food and medicine down, I was walking to the bathroom a little easier, and now all I had to do was hold on till Monday when I was projected to be discharged. I didn’t get much sleep that night but I finally slept pretty hard from 5:00 a.m. to about 6:30. I woke up just before my night nurse came in to introduce me to the day nurse who would be taking over for her at 7:00 a.m. They left the room and as I laid there in bed and my mind and body began to wake up, there was suddenly another feeling that was waking up too. Pain. Bryan was asleep on the couch, desperately holding on to the last hours of “night,” but I knew I had to wake him up. This was about to get ugly.
(Side Note 2: If you’ll allow me two in one post, I have some more information to share that is pertinent to the story. Whenever you are in the hospital, doctors and nurses always ask you to rate your pain on the classic 1-10 scale. They then use that to determine if you need medicine and if so, how much. Now the important thing to know is that my pain scale is pretty jacked up. Always has been. I don’t know if its because I lived with pain in my colon all day, every day for so many years and my body just learned how to accept it or what, but it’s really out of whack. And I’m not telling you this so you will think of me as some kind of intense wack-a-doo who goes around asking people to punch me in the stomach because I can’t feel it… No. It’s just that I literally no longer feel pain the way the average person does because if my body hadn’t adapted, I probably would have spent the last ten years of living with Crohns curled up in the fetal position. Remember this as we go on.)
As the pain quickly intensified, I managed to say Bryan’s name loud enough to wake him up and with one look at my face, he knew something was wrong. We called for the nurse and when he came in he first asked me what my pain level was. To give you some reference points, after colon removal at Mayo, I was at about a 2-4. The plane ride home from Mayo was a 4. The bone biopsy was a 6. And what I would say was the worst pain I had ever felt in my life before this whole saga, when my rib popped out of place for the first time, that was a 7. When my nurse asked me what my pain was in that moment, I was an 8. A solid 8. And that, is a LOT for me.
I felt like a sword was being pushed in and out of my side where the tube was. I felt like someone had brutally beaten my left rib cage with a baseball bat. My lower back was one massive, throbbing knot of muscle as was my left shoulder. My entire abdomen felt like I had just finished the most intense ab workout ever. My lower abs cringed with any movement. And every shallow breath I could manage to suck in sent searing pains stabbing and pulsing through my entire body. I had never in my life been in so much pain or felt so weak and helpless.
Praise God for my nurse that day, he was truly an angel for us. He set right to getting me the pain medicine that I needed and I could actually rest and feel like he would do all he could to make the pain go away. He brought in a pain pill but I couldn’t even lift the pill to my mouth without causing too much pain. He stayed and helped me get it down and while be was there he asked me how many days post surgery I was. Bryan told him this was day 3 after surgery and our nurse was quiet for a second. He asked if I had, had a morphine pump and if so, why I didn’t have one now seeing as days 2-3 are the worst after a drain tube placement… Are you kidding me??? I don’t know how we were never told that piece of information but that didn’t matter. Fact was, we weren’t told and now I was in too much pain to even think about it. All I wanted was for someone to knock me out and wake me up after Monday. My nurse left then to get me some morphine and while he was gone, tears began flowing from my eyes. Not the tears like “this really hurts so I need to cry,” and not even the “I am so frustrated right now I don’t even have words” kind of tears, though I was feeling both of those things. These tears were completely involuntary and seemed to be streaming from my eyes directly from the the pain itself. I couldn’t help it, I just laid there and cried. Bryan held my hand and cried out to God for me but I’ll admit, at that point I didn’t really feel like talking to God. I was more in a place of “God I think it’s pretty obvious right now what the desire of my heart is so please hear me. If not then I’ll have to talk to you later.” I know that wasn’t the most mature or spiritual response I could have had but I’m just being honest and that’s exactly where my flesh was at that point. In fact, if God had asked me right then and there if I was ok to go ahead and leave this world, I probably would have thrown in the towel and asked Him to take me home. Funny how pain has a way of doing that too you but truth is, there’s only so much a body can take and I was at my breaking point.
We spent the rest of that day getting morphine every 2 hours and pain pills every 4 but it wasn’t until after dinner time that evening that the medicine finally caught up to the pain and it finally began to ease up. Even though I was feeling better I didn’t sleep that night at all. I was too afraid of waking up like I had that morning so I figured I would just stay away and try to move around enough in my bed to stay loose. By morning, my plan had worked and I wasn’t sore I was just tired. But I’d take that over the pain any day and it was a lot safer to take a few cat naps during the day anyway.
Over the next couple of days Mom and Bryan took turns staying with me and we did have a good time amongst ourselves. We have actually developed a pretty functional way of living in a hospital and all flow well together. We make each other laugh a lot and have a saying that goes “If you don’t make your own fun. you won’t have any fun.” And in our lives right now that’s pretty much true. So we turn everything into a game and have way too many inside jokes to be considered healthy. But it always helps me pull through and I wouldn’t change it for anything.
I stayed on a lot of pain medicines and seemed to be doing ok. I didn’t get any worse and I felt like I was making at least a little progress. I could sometimes lift my leg halfway up to the bed without having to have someone do it for me and that was big progress! My poor muscles had atrophied so bad that I couldn’t have done a squat to save my life. Chicken legs were happening major 🙂 and who am I kidding, they still are, ok! The best part over the next two days was that I had visitors. First came my dads two sisters, their husbands, and my dads brother. What a blessing. I don’t know what your relationship is like with your extended family but I am VERY close with mine and that I also would not change for anything. It was medicine for my spirit to be with family and while they were there I could feel my joy growing more and more. My favorite part that day was when my Uncle Steve and Uncle Donnie knelt on either side of my bed and prayed over me as my aunts, parents, siblings, and Bryan joined in around the room. You may have never experienced this, but for me there is just something about when men of God pray over me that seems to breathe the very life of the Almighty into the core of my being. It speaks to my soul and makes my spirit rise up like nothing else in this world does. (And I’m not saying that women cannot pray as effectively as men can, they can. It’s simply that God gave men an authority, as the leaders of families, that is not the same.) And when my uncles started to speak life and healing and wholeness and peace over my body, I could feel God’s presence fill me and my room and my will to continue fighting in this battle for my life was given just the fuel that it needed to kick the devil in the goods and let him know that he has no power over me or my body! Amen. My pastor, Pastor Tim, also visited and when he prayed over me, same experience. It may just be me, but it just does my soul good when men of God rise up, boldly take their place as sons of the King, and claim what is rightfully theirs over those that they look after. And I am blessed to know that my pastor and all of the men in my family rise up and battle for me day after day with unwavering boldness!!!! Praise God. Praise God. I also got to see two of my best friends who have battled with me for months now, and seeing as they brought me my favorite mango smoothie from Panera, it was especially good to see them 🙂
Then came Sunday, day 5, and the day of resurrection of our savior Jesus Christ. I wasn’t getting up and putting on my Easter Sunday dress; I was in a hospital gown in a bed. I wasn’t going to hunt for Easter eggs with my cousins; I was barely able to walk to the bathroom. But I have to say, I was so humbled knowing how miserable I had been the last few weeks when I thought about how that compared to the sacrifice Jesus made on the cross. I wasn’t able to go to church that Resurrection Day but this was the most real Easter I had ever experienced. God works all things together for the good of those who love Him. Bryan had stayed with me that night and we were extremely excited when my parents and Kirsten and Jarrod walked in the room, lookin’ good and bearing Easter baskets!! Nothing like a two pound Reese’s egg to brighten the day! Then we ordered a wonderful lunch from Outback and had a lovely dinner in my room with my whole family and even a surprise visit from my Uncle Kendall, Candice, and Kennedy. And for a while, I got to escape and feel like I was home.
Bryan left that night to go back to Lexington and class the next day and we all prayed I would be able to go home, for real, the next day as planned. Monday morning I went in for a drain study where they checked on the abscess to see what was left so they could know whether or not I was clear to go home. They did the study and a few hours later… I was given my freedom!!! Hallelujah! I cannot tell you how relieved and excited I was to get out of there! Mom and Dad packed up all my things, I got myself cleaned up and, yup, once again, I donned Bryan’s infamous baseball sweatpants! Then, I plopped my swollen self down in that wheelchair and I was outta there.
As I tried to heave myself the whopping 11 inches up into the car, you’d have thought I was trying to climb Mt. Everest. But, I made it, and, when I finally got in my seat, I let out a sigh of relief and settled in. It was then I realized that we were going to be driving home through downtown Louisville, where bathrooms are scarce, and I didn’t have to be anxious at all. In fact, I could ride the whole way home and not count the exit signs and plan my escape route off of each one… what a feeling—a feeling I hadn’t experienced in over a decade. And it was long overdue!
After we made it to my parent’s house, I was worn out even with just that 20 minute drive; but, I had enough energy left that my parents packed up the rest of my things and we made the drive back home to Lexington. This was going to be my first time home in almost a month, my first time to see Layla in almost a month, my first time ever to be in my own home and not be chained to the bathroom…and I could not wait! I knew there were still trials ahead, but I could finally see the light. God had not failed me. I had not given up. My parents and Bryan had survived with me. We had all been through Hell and back again, and, now, it was time to heal. Finally, the worst truly was over and only better was yet to come. Praise God. He is good.