I just returned home this week after nine days of hospitalization. This came on unexpectedly. I had my second course of the clinical trial chemo treatment on May 6. Everything seemed fine, and in fact, as before, it was easier than my first type of chemo in terms of side effects and nausea. While I had more intermittent nausea the weekend following treatment, it was intermittent and not three days of continuous nausea. The next week, which was the first of my two weeks off, I did yoga every day, went to work except when I had appointments, had energy, met friends for lunch, went out to dinner with my family and husband, and generally lived. In fact, I was feeling so strong that for the first time in months I did not only the full primary series of my Ashtanga yoga practice but the intermediate series poses I had been given. Sunday I ran around the whole day, with no indication that by that night I would be doubled over in pain on my way to the emergency room. My cousin Mary asked me to come to Grosse Pointe, go with her and my aunt to church where she was having a mass said for my mom, and then go to brunch with them. Although I do not go to church and have not for years, and although my husband is Jewish, I thought it was a good thing to do, to honor both my mom and my aunt, who is my second mom. My aunt was thrilled I came. Afterwards, we went to the church social hall where she introduced me to everyone, then to brunch at a cute restaurant Mary picked out. I then met Alan in Birmingham where we walked the dogs in the glorious sunshine and went through the spring art fair. Then, I returned home to pack for a business trip the next day to San Antonio. The plan was to go to dinner that night with our son Alex, I would leave for the airport the next morning and return from San Antonio Tuesday. That was not to be. After packing, and about an hour before we were planning to leave for dinner, my stomach blew up to new heights, a sharp pain began in my right abdomen and then I started getting sick, with the pain increasing and increasing to the point that it reminded me of when I was in labor. I e-mailed Dr. P, who told me to get to the emergency room. It was so bad I could not make it downtown, and he told Alan to drive me to the closest hospital, which turned out to be the one whose pathologist had originally misdiagnosed my type of cancer, but the one where my internist is admitted. The pain was so intense that I was panting and moaning in the car, and the minute they put me in a wheelchair I begged for pain medicine. I am not one who takes such medicine lightly, and I have rarely filled prescriptions for pain meds in the past, but this time, I had to have it. They injected me with dilaudid. Within seconds I felt a flush and relief. I was then admitted. It was Sunday night about 5:45 p.m. I stayed there until Wednesday morning of the following week, or nine days.
The first two days were a blur – a lot of time was spent trying to get records from Karmanos to Beaumont so that they could catch up to what had been going on in my body. I had CT scans, x-rays, barium x-rays. HIPPA interfered because although my latest scan from MD Anderson was at Karmanos, under HIPPA, Karmanos could not release it to another institution even with my permission because it was not done by Karmanos. It took a couple of calls from Deb to MD Anderson to get it to put the scan into a dropbox for viewing by the Beaumont staff. An NG tube was inserted through my nose, down my throat, into my stomach, to suction fluids from my stomach. That took two tries, and was a miserable experience. I also, unfortunately, had the world’s worst roommate, who not only complained nonstop, was rude to all of the staff and made constant demands, but kept her TV blasting 24 hours a day . She was so bad that at the end of the second day the nurses aide, who was so sweet, walked out of her curtained area, burst into tears and said to the two other aides in the room “I can’t take this any more.” I burst into tears and said the same thing, and we hugged each other and cried. I asked to move, and they said it would happen. It did, within the hour. The roommate, who unfortunately shared the same first name as my cousin Denise, was acting out and angry that her doctor was moving her from injected pain meds to oral pain meds to get her ready to go to rehab. She did not want to leave, she wanted her injected pain meds, and she made sure everyone knew how unhappy she was about the decision. She never stopped pushing her button, screaming for the nurse, complaining about the doctor, asking for her regular doctor, who was not her admitting doctor and did not have privileges at Beaumont, and she did not care who she disturbed. It was awful and it was hampering my ability to get any rest. I was exhausted. They moved me on Tuesday night. On Friday night I was moved again to a private room, which was the best.
By Friday, the surgeons and doctors had come to the conclusion that a mass in my left ovary had grown significantly and that it was essentially pushing against, and thus functionally blocking, my colon, causing a functional bowel obstruction. Surgery to bypass the bowel and do a hysterectomy was scheduled, but for Tuesday, after the Memorial Day weekend. However, Friday night I began losing blood and my blood count dropped by one-half, necessitating transfusions eventually of four units of blood. I was told that they may have to do emergency surgery Friday Night but first had to get my blood counts up and do another scan. That was the most critical night. Despite my instructions to the nurse practitioner not to call Alan until we knew if emergency surgery was going to happen, he called Alan at 11:00 p.m. and told him he should come to the hospital and that my situation was grave. Alan was there until 3:00 a.m. I am just grateful that the next day was a Saturday and he did not have to go to work. After that critical night, things started to move in my system throughout the holiday weekend. In fact, I am lucky I had the three days before surgery was scheduled to get more stable because surgery was cancelled Tuesday based on my status. I felt horrible still, and my stomach not only continued and continues to look nine months pregnant but I also have swelling from my feet to my breastbone. I told the doctors that for the first time in my life I had fat thighs (my legs and arms are very thin, normally). In fact my words were that I felt like Porky Pig.
Things moved quickly after that. Tuesday morning, at the same time that the surgeons told me that surgery was cancelled, they also agreed to remove the NG tube. That made me very happy. Within hours I went from a liquid diet to an unrestricted diet and was sent home the next day when I tolerated eating food. I was thrilled to be going home. Sleeping was not happening, I was so uncomfortable with the stomach and swelling. I was sick of being in a hospital and just wanted to recuperate at home.
Coming home has not been easy. Wednesday, I was so weak I could not even walk without assistance. Thursday (yesterday) was a bit better. Today is a bit better still. I still look as if I am nine months pregnant, and my legs are still all swelled, although slightly down. I have had visitors, but my sleep is very intermittent. In fact, I dread the long nights. At best I sleep a few hours, then am awake a few hours, then doze a few hours. I cannot wait for the daylight. I am also very emotional. I can cry in a heartbeat and do every time I relate this story to a visitor. I know this comes not only from the ordeal but from the vulnerability I feel and the lack of control. I was feeling great. I had no indication that I would be in a hospital, and suddenly out of the blue, it all went downhill. That is a frightening thing. It brings it home to me once again just how little control I have over this f……g cancer. I am back home and plan, by next week, to be doing yoga again. I see Dr. P on Tuesday morning to discuss next steps. I hope by then that instead of being nine months pregnant a couple of months have dropped off.