It is so good to be home. It has only really been two days, but the seemingly endless hospitalization already feels very far behind me. It is my fervent, nightly prayer that it remains that way. Tuesday was an unexpected and interesting day. I woke up wanting to go home, but already accepting that I probably wouldn't be. My stomach is having the hardest time dealing with the GVHD, and I had only been taken off of I.V. nutrition that very morning. I still felt crappy when I ate, and eating was becoming more and more of a battle. I was also having trouble getting enough liquid down. So I wanted to go home, but I was willing to be a patient for one more day. I showered, went on a walk, ordered breakfast (a plain bagel and chicken broth, yum!), and switched on the television. Then in strolled Jeff. Ah, Jeff.
I sighed inwardly that Colten was home and not around to head him off, and prepared for his inquisition and checkup. After his typical million questions, he gave me a once over and commented that he was fine with me going home, but he was not sure how Dr. Peterson would feel as he tended to be much more cautious in these types of situations. They would discuss it in rounds. I nodded my understanding, having already spoken to Dr. Peterson the day before, and contented myself that Jeff was finally leaving my room and I could get back to my day. End of story. Life went on. Then, not half a show later, Jeff came barreling back into my room talking about getting prescriptions ready and needing my current medication list from Colten because it looked like I was going home! As I mentioned, the news changes around this hospital with the shifts of the wind.
Jeff was excited. Adamant. Clear. He was sure Dr. Peterson was fine with the situation. So I called Colten while he was still in the room and asked for him to bring my medication list, as well as to come pick me up. Jeff whisked himself away, and I started to pack up the few belongings I had. I was not mentally prepared for this hospital stay. And I was never able to overcome it mentally, really. It was a very long, very ill-tolerated ordeal, and I had done very little to try and make it better. I did not bring my own blankets or pillows, nothing to decorate the room as my own. I greeted the hard hospital bed and slick linens each night like a stranger leaving in the morning, and I kept my only bag of clothes tucked away in the closet, ready to leave at a moment's notice. My laptop was the last necessity to grab and add to my small pile. I was packed and ready for home in minutes, lining up my few possessions on the bed to wait.
And then the miscommunications began. This hospital runs in levels. There are "patient care assistants," which are basically C.N.A.'s and such who come in frequently and take patient vitals, check blood sugar levels, change linens, and run errands such as getting patients fresh water or towels, etc. Then there are nurses who oversee medications and all other higher callings. Then there are the "midlevels," which consist of L.P.N.'s and P.A.'s, and they come and meet with patients every day, do a checkup, and then report to the highest level: the doctors. There are supposedly rounds that take place every morning that all the midlevels and doctors attend, as well as any nurses who are able, so it is a complete "care team" and it sounds like this great setup. But it isn't. And as the levels continue, so do the miscommunications, it seems. In any case, my nurse came in suddenly to inform me that Dr. Peterson was, in fact, not comfortable with me going home yet, and that everything was kind of on pause until he came in to meet with me. He basically told me that everyone was waiting for Dr. Peterson and I to "hash it out" and see where things landed. It was obvious who he thought was going to win the battle, and it was not me.
Colten had already arrived by this time, and I sat down in my chair stunned at the (once again) change of information. I was angry. I had already packed. I had been told I was going home. I was already committed, already gone in my mind. I looked at my nurse and told him, "I will definitely be talking to Dr. Peterson. As you can see," I motioned at my belongings, "I am ready to go." He smiled and ducked his way out of my room. Colten fumed. I seethed. Then, Jeff made his way back to my room, and proceeded in his oh-so-Jeff manner. "I'm sorry if you did not understand or feel that there was a miscommunication," he said calmly to me. It took everything in me not to punch him in the face. Of course, I did not understand, it could never be that he was simply at fault. I looked at him and said, "You know, I am getting really sick of all the misunderstandings that seem to happen in this program. They've been happening a lot, particularly during this hospital stay, and I am tired of it." Jeff smiled and nodded and basically backed his way out of my room, letting me know once more that I would have to talk with Dr. Peterson and that it was out of his hands.
So we waited. And Dr. Peterson arrived. I actually really like him. He's the reason I came back to a hospital I detested, and he does have very genuine, caring qualities that make me trust him and allow him to defuse situations such as the one he found himself in on Tuesday. His amicable disposition radiated from him as he sat to talk with me, and he laid out his fears if I were to go home. He mentioned that staying one more night might prevent me having another hospitalization, that he was not totally comfortable with the progress I had made, but then he gestured to my bags, "I understand there were miscommunications and that you are ready to go home. I don't want to give you a mental setback. I know you have been through this before, and that you will call to report it if you have any symptoms and come in. I feel that you are a good enough patient that you can go home, but you must be very careful." I loved him in that moment. I felt like I should apologize, do something to let him know that his beliefs of me were justified. I tried explaining that I was just mentally exhausted and needed to go home to heal, to which he replied, "You are on a lot of steroids. They are going to mess with your emotions." Maybe it was the steroids, but my love was suddenly gone. I went from a cynical nurse telling me I was going to have to have a showdown with the doctor, to an idiot P.A. telling me that I misunderstand everything, to a doctor telling me I was just an emotional mess. What is wrong with these people? I held my tongue, nodded my head, and bided my time. There was nothing else to say or do. I just needed to leave.
And I finally did. And I've been trying to take it easy, make sure I am eating and drinking enough, and just doing my best to get through the days. The days are so much better here. I had labs this morning, and it was the very first time I was able to leave the hospital without requiring a transfusion or some other medical intervention for an entire day. My body is slowly starting to work like it should. We are going to make a quick trip to visit my sister this weekend for my nephew's birthday, and then Rora is going to go and stay with her Grandma Long next weekend for a family reunion. She is so excited for her first big family reunion! I am just taking it one day at a time. We will hopefully be moving down to a first story apartment in the next couple of weeks, and until then there is just not much for me to do, and I think that's fine. I am going to take some time to recuperate, and let this GVHD calm itself down. Hopefully it has already gone crazy and killed all my cancer (that's my firm belief anyway). No more hospital stays for this lady. The free side is so much sweeter.