Last night I had enough! I was sick and tired of feeling the pain from my distended stomach that has been ongoing for two weeks. While at St. Joes in my most recent stay, I was transferred back and forth between teams and never had a consistent hospitalist to represent my case. Based on one of the comments from an Oncologist, I decided to try another route through SHC and see if I could get another answer. Worse case scenario, I would lose another night of sleep in ER. Best case scenario, I would have an answer to my ongoing stomach pain and be on the way to a solution.
I arrived to the ER at 10pm, was admitted to the back area by midnight and to my own room by 2:30am. The only pain medication at this point was 1 mg of dilaudid. Are you kidding me? I am used to receiving 4 mg every 2-3 hours! Somehow, I was able to fall into a deep sleep and only woke twice during the night. This was a HUGE improvement over the past few nights! I woke at 7am eager to find out next steps and get the pain under control.
It wasn’t until 10am or so that I finally saw the internal medicine doc who wrote for a CT scan and medications. Shortly after, I saw two ladies that represented “supportive care”. From what I understand, their job was to make sure that my pain was managed until I met with the pain doc’s team “Dr. Stern”.
I expressed my concern and lack of attention to the pain. They immediately went to track down the nurse and put in an order to be moved to the Oncology floor. The nurse returned saying that she could not give me IV dilauded and had to get the pills approved since I was not allowed to drink water prior to the scan. At this point, I almost lost it. My voice was shaking and I was on the verge of crying. I exclaimed, “I don’t know what you need to do, but get the doctor on the phone and we have GOT to get some sort of pain meds! By the time I received the pills and they started working, it will be 1 1/2 hours from now. I can’t wait that long! I have been waiting all night for pain meds!” I think I finally got through to her because shortly after, she had spoken to the doc and was able to give me the regular 4 mg of dilaudid and I was back on schedule to receive my regular pain meds.
Fast forward. 9pm the rounding oncologist, Dr. Bibb (works with my oncologist, Dr. K) came by to discuss the CT scan. He showed me the actual scan and expressed concern that there are two tumors that need to be addressed with radiation and chemotherapy asap. One is on the right posterior iliac bone (pelvis) and the other is in my right femur? The tumors are both the size of large golf balls and the one that is on my left pelvis is in the area where the rotator is. This means that if I get a fracture there, then I won’t be able to walk. Yeah, that will be a HUGE problem for me. I would go absolutely crazy not being able to walk.
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12midnight. I just returned from more X-rays. This time the X-ray was of my leg to get another look at the tumor and see if there were any fractures. I asked the X-ray guy if I could see the charts and he agreed, but said he would not be able to read them to me or answer any questions. Based on what I saw, there was definitely the tumor, and it didn’t look like any fractures. Who knows though…I certainly am not a doctor. Tomorrow, the plan is to give me Mag Citrate. Yep, this stuff literally “cleans house”. I will probably be in the bathroom a good portion of the day tomorrow. Thank goodness I had my parents bring some soft toilet paper. I will also be getting another ultrasound of the veins in my stomach to make sure I don’t have a blood clot. I did have this done back in March when I had the pancreatitis and the test came up negative.
So, all in all I am happy that I listened to my gut instinct and decided to come up to SHC. I am just hoping that they will be able to discharge me by Thursday afternoon so I can get Thursday and Friday still in for radiation and talk to the radiologist doc about targeting the new areas. When Dr. Bibb told me (and my friend Kelly who was in the room) about the new tumor, I have to admit was really scared. I think the reality of having two tumors that are the size of golf balls makes me uneasy and more anxious to attack this cancer with everything they’ve got. I have GOT to stop the spread of this through Chemotherapy! I am terrified that the cancer will eventually spread to my brain and affect my motor skills and thought process or head to one of my major organs. It’s funny because I still feel like I am waiting to have a mental breakdown or something . So far, I have been upset, scared, sad, and angry; however these emotions have only lasted a short time and then passed. I guess I feel like there really isn’t any point in wasting my energy being so upset because I have no control over it. I am wondering how long though before I get really frustrated that my life is out of control and I am at the complete mercy of nature. I can only plan hypothetically for the next while…it’s a scary thought.