Wednesday

Today is a better day so far. I am currently sitting by Mama Marian's bedside and, for the first time in five days, she is sleeping. In fact, she even managed to sleep through the psychiatric rounds with Dr. Hill and his ducklings. She is also currently out of restraints for the first time since Sunday. Her speech is still very confused and difficult to comprehend for the most part, but you can understand what she is trying to get across much of the time by her expressions, movements, and tone of voice. She has been entertaining everyone today, in fact, as her mood has been very pleasant and her sense of humor is clearly returning.

A couple of hours after my last post we received a phone call from the nurse at McLean, who was very concerned with Mom's restlessness and agitation. A few minutes later Abby, the NP at Dana Farber, called in response to Dad's earlier email regarding the change in symptoms. Abby recommended that we take Mama Marian to the hospital, as it was getting too risky for all of us to keep her home. The nurse from McLean agreed when she arrived at the house around 2pm or so and she called for an ambulance to take Mom to UCONN Hospital.

The next few hours were excruciating, as Mom grew increasingly disoriented, agitated, and paranoid. She began screaming before we reached the hospital and I could hear the fear in her voice immediately. It was as though someone had flipped a switch and Mom became extremely labile, screaming in anger one moment and sobbing in terror and grief the next.

Dr. Fuller, the ER physician, was very patient and very respectful of our wishes, experience, and recommendations on how to treat and manage some of Mom's symptoms. He listened carefully as I explained the last eight months as succinctly as possible and took our lead on holding back on narcotics, opiates, and benzodiazepines because of her adverse, and often contradictory reactions to them. Dr. Fuller requested a consult with the on-call neurologist, whom came in shortly after to examine Mama Marian. During her exam, the neurologist had Mom keep her eyes on a five-dollar bill she had plucked from her white coat. In the blink of an eye, Mom seized the money and had ripped it in half. She clutched her portion of the bill tightly and did not release it until Dad pried it from her fingers before the doctor left. The neurologist, Dr. Greenspan (yes, we called her Allen but she was not amused) noted many of the same neurological deficits that have developed with the tumor over the past eight months. She and Dr. Fuller ordered a CT scan after trying to sedate her a bit with 400mg of Seroquel, two Percocet, and two muscle relaxers.

The ride to radiology was a brief one, as Mama Marian decided to climb off the stretcher mid-way through. She began yelling and screaming as though we were taking her to the torture chamber so they wheeled her on back to her "room" in the ER. The doc ordered an injection of Haldol to try and sedate her further, but this just made her even more agitated and angry. Once she seemed to be a bit calmer, though, they tried to take her to radiology again. This time we made it to the CT scan machine, where Mom promptly spread out over the stretcher and the CT scan bed and cursed a few techs out... so, we returned again to the "room" in the ER. On our way back Mom was extremely agitated, so I tried again to calm her and help her lie back on the stretcher/gurney. I received another chomp on my right shoulder and let out a nice yelp so that now not just 99%, but 100% of people in the ER were staring at us in horror.

After this, Mom received another injection of Haldol and anesthesiology was called. They gave her the Michael Jackson cocktail of Propofol to knock her out. The CT scan was done, she was returned to her "room", and we waited while they prepared to admit her. Little did we know, she would not be admitted until the next afternoon...

Monday and Tuesday brought some changes, good and bad. A psychiatrist, Dr. Hill, met with Mom and explained that he and the psych team were going to experiment with some medication to counter the psychotic effects from the narcotics and opiates she had been given. She has responded well to Zyprexa and this is her second day on this. She has also just been prescribed Elavil for depression and for her pain, while the Cymbalta that was started last Wednesday was discontinued. They are also weaning her back off the Decadron, as she does not have much edema apparent in her scans. Mama Marian finally got some food in her system yesterday around noon, as she had not eaten since Sunday. And today, finally, she began to sleep again. She had not had any more than 20 minutes or so of sleep since Friday night.

We managed to get Dr. Senatus, Mom's neurosurgeon, involved again with Mama Marian's case. He came yesterday for a consult and Mom was delighted to see him again. Dr. Senatus explained that much of Mom's pain is "centrally located" and is very difficult to treat. However, he recommended a couple of drugs and will be following her for the remainder of her hospitalization.

In the meantime, Mama Marian has had some great visits and advocacy from friends at home and work. Mary T. has been so good to Mom and has helped me and Dad out quite a bit as well. After her visit with Mom on Monday, I called her to put her on the case yesterday morning while I contacted Dana Farber, Dr. Senatus, and Dr. Levine to get them further involved.

There are many questions looming... what caused what? Why is this happening this way at this time? What exactly is going on and how long will it continue? I have been trying to stop the questions, because they are becoming less and less important these days. What matters is that we are doing what Mom would want us to do; we are making sure she is as comfortable and pain-free as possible. I suppose we have the rest of our time on earth to ask questions, but for now it feels like somewhat of a relief to put the puzzle down and take a look at the bigger picture. We hope to bring Mom home when she is discharged and will have Hospice in place. If she is not able to be managed at home, the doctors have presented us with inpatient Hospice options as well. We are lucky to have this time with her and will take the good days, or hours sometimes, as they come.