I'm sorry to report that today was not a good day. In fact, today was an awful day. The one thing several doctors have said to us is that this type of brain cancer is not painful...I was comforted knowing that my mother would not be in pain throughout this process. Unfortunately, today that just was not true. I hope she never has to experience this kind of pain and discomfort again.
Since Thursday, my mother has been complaining of a headache and increased pressure and squeezing behind her eye. I've been concerned that her intra-cranial pressure had been increasing. Since Thursday, I've been trying to talk to a doctor about it, but have not been able to see Dr. "Suave" in person. The physician assistant said it was no big deal, and the nurses have not been passing along my mom's complaints, and the floor residents have all basically done the "not my bailiwick" response and directed me back to the neurosurgeon.
This morning, my father called with his morning update and told me that mom had been experiencing nausea. After her hospitalizations in May and a few weeks ago, I knew that meant increasing intra-cranial pressure. I immediately got on the phone trying to reach Dr. "Suave." I tried several numbers I had for him, and none of them worked. I called my dad to see if he had Dr. "Suave's" card, and he did not. I called my brother to see if he had the card, and he did not. As my brother and I were talking, he was looking at Dr. "Amazing's" card, and realized that his email address looked fairly standard (a first initial last name address). My brother suggested that I try using the same format for Dr. "Suave" and see if we could reach him that way. I think about 10 seconds after I hit send on my email, my cell phone was ringing!
Dr. "Suave" and I chatted for a bit, and he quickly reassured me that he has not been neglecting my mother. I mentioned that she had been experiencing increasing pain in her head and behind her eyes, and that I was concerned that her discomfort had escalated into nausea. I communicated that she was hurting, and had now been uncomfortable for several days and I felt that they needed to do more for her than just simply give her Tylenol. He indicated that he was aware of her increasing discomfort, and told me that he had authorized a few additional medications over the past few days to try and increase her comfort. He promised that he would be in to see my mother today, and would come after noon when we would all be there, and he would call over again to hear how she was doing and see what else he could do for her. He also told me that we would be meeting with the oncologist and the radiologist this week to discuss moving forward.
DH took Micah to services, and after speaking to Dr. "Suave" around 11:00 am, I took Maya in the car and drove up to the hospital. Our plan was that DH would likely bring Micah up to meet us after Micah's afternoon nap (although I canceled their visit when I realized how sick my mom was today). When I arrived at the hospital, my sister-in-law was already there. My mother was extremely uncomfortable, complaining of severe nausea and pain behind her eye. I learned that the morning therapy session was cut short because my mother was in too much pain. We spent time putting cold and hot compresses on her head and neck, and we talked to the nurse and got her some more anti-nausea medications.
The nurse came in and informed us that they planned to take her down for another CT scan. They also gave her some additional medications...neurontin (for nerve pain...Nugget used to take that years ago for her back pain), tramadol (for her headache) and they increased her steroid (from 2 mg every 8 hours to 2 mg every 6 hours). About 30 minutes later, the nausea seemed to ease up, and my mom was feeling well enough to eat a little pasta and some carrots for lunch. They came to take my mom for the CT scan, SIL left to go home, and I took a quick break in the cafeteria.
When I returned, my mom was just coming back from her CT scan and her nausea had increased and her pain was through the roof. At that point, she started dry heaving. I was doing everything I could to make her feel better, but I was getting angry that they were letting her sit in so much discomfort for so long. I sent Dr. "Suave" another email, and I asked to speak to the floor doctor.
My Dad and my mom's friend arrived around 3, and my mom was in terrible shape. I was trying to hold the bucket while she threw up, wipe her brow, and nurse a crying baby all at the same time. My mom's friend immediately took over caring for my mom so I could take care of Maya - she was a huge help all day today, and frankly, she did most of the dirty work today.
By 4:00, my mom's nausea, pain and vomiting were all escalating, and I was livid. I asked the nurse to page the doctor, and I also asked to speak to the resident for the rehab wing. Initially, they said he was gone for the day, but they did reach him on the phone and got permission to give my mom some composine for the nausea. The composine finally arrived around 4:30...and that did absolutely nothing for her. By 5:00, I was furious. My brother and cousin had arrived, and we were all quite concerned about my mom. My mom's friend kept her cold hands on mom's head, and we were taking turns helping my mom hold the bucket.
My brother also sent Dr. "Suave" an email asking him to get in touch with us, and I sent a second email to him. We were getting extremely worked up by the lack of response. In the middle of all of this, my mom's friend and co-worker arrived to visit. I felt terrible that she really was not in a position to have a good visit with him, but she was so happy he took the time to come see her. He brought her a beautiful little frame filled with flowers with a lovely poem inscribed around the edges. I read the card and the poem to my mom, and she thought it was beautiful. Unfortunately, he couldn't stay long because my mom was so sick. When he left, my mother turned to me (as she does EVERY time his name comes up) and said, "I really like G...he is a kind man, and he truly is such a Gentleman."
Finally, at 6:00, I got an email from Dr. "Suave" saying he was unexpectedly diverted for an emergency, but he would be in touch with us soon. It was almost 30 more minutes before the nurse came in to say that Dr. "Suave" was on the phone. I went to speak to him, and he said that he was looking at the scans and he felt that my mom's tumor had grown slightly, but it did not look like the "mass effect" (the swelling/pressure due to the tumor) had changed much at all. He said that her increased symptoms could have something to do with the tumor growth, but it could simply be due to the decreased steroids over the past few days...that my mother may not be tolerating the lower dosage. He said he was going to give her another 10 mg of decadrone to try and immediately reduce the pressure, and then he would be increasing her oral steroid dosage to 4 mg every 6 hours. He felt that she would quickly experience relief and then we would worry about trying to reduce the dosage a bit later. Dr. "Suave" also assured me that he was sending over his resident, who would stay and oversee things until my mother was feeling better.
After our phone conversation, the nurse informed me that the rehab resident would also be in to see us shortly. Within 30 minutes, both residents were in the room, and there was a nurse on site to administer the decadrone and more zofran. The rehab resident also prescribed some reglan to help with the nausea. The rehab resident is also a doctor of osteopathy, and he spent some time manipulating and adjusting my mother's neck to relieve some of the kinked muscles in her neck.
Finally, with the decadrone on board, and more anti-nausea medications...my mom started to feel better. It was such a relief to all of us! We did also get an apology from the residents and Dr. "Suave" for taking so long to relieve my mother's pain. When we finally left around 7:45, the pain in her eyes seemed to be improving, and the nausea was finally beginning to subside. We hoped she would fall asleep and have a good evening.
About 2 minutes ago, I received a call from my father with the latest update from the hospital. They said mom is currently resting comfortably! They said she does seem a bit confused (not really a surprise with all the additional medication they had to give her today), but I expect that will pass tomorrow. What a relief!
I'm hoping tomorrow is a much better day, and I am hoping that they can keep things under control with better dosages of the steroids. I don't want my mother to have to experience another minute of pain...and I certainly never want her to live through a day like today again. Seeing her that way...and being able to do nothing to help her...was terrible. I am so angry and frustrated that the doctors let it get that awful. She has been progressively complaining about the headaches and other symptoms, and I wish they had acted faster to respond to her discomfort. I have been told they will be more proactive with monitoring her pain and will be more careful about reducing her steroid dosage in the future.
No pictures today...but perhaps I can snag a few tomorrow.
18 months in review
2 weeks ago