After one of the most difficult paths on this journey, Mama Marian made it home again this Friday evening.
The results from the CT scan came back as we suspected; no new tumor growth is apparent, just minimal necrotic tissue and a gaping hole in what was.
Mom's pain responded well to the Toradol, although it can only be taken for five days and results in some mood changes and confusion. Though, it seems nothing can compare to the effects of the Dilaudid and Valium they had been giving her. She had a severe allergic reaction to one or both of these, which resulted in a drug-induced psychosis of sorts. This was terrifying for her and for us; however I must say that it earned her a private room by the nurse's station and 24 hour "sitter" care.
On Wednesday night I took advantage of the open hospital bed and "slept" next to her in her room. I stayed for some uneventful rounds with Dr. Dos, a consult with Dr. Anderson the physiatrist and a hospital physical therapist as well. Dr. Anderson examined Mom's leg and discussed her treatment history with us. He suggested she consider Botox treatments to relieve some of the pain in her leg. Dad checked with Dr. Drappatz, Mom's neuro-oncologist at Dana Farber, and he encouraged us to explore it as "one of the many" pain management options available. Dr. Anderson explained that Mom's spasticity and focal seizures might respond well to Botox treatments, as they have been effective for stroke patients and individuals with Cerebral Palsy. As an added bonus, Mom's already nice legs may be runway material after treatment! What a thought... treatment with positive side effects!
Around noon Jeff, Dou, Lorien, Aunt Beth, and Uncle Al arrived to visit. There was no talk of discharge at that point in time so I went back to the house with Beth and Al for some much needed quality sleep. On the way home, we learned that they had decided to discharge her that afternoon. Dad was already on his way up to the hospital after packing all of their belongings, as he expected to spend a night or two in a hotel nearby. So, Mama Marian was released with a three day supply of Toradol and some less-than-fond memories of her time on the Eastern Shore.
Beth, Al, and I didn't get to say "goodbye" to Mom, as Dad wanted to get on the road as soon as possible and it would have been crazy for us to make the hour long drive back right after we had returned. Plus, I was approaching delusional myself at that time and couldn't imagine being of any help to anyone. So, Dad and Mama Marian climbed back in the car for a daunting drive home to Connecticut. Dad said that Mom all of a sudden realized over dinner that evening that she had missed much of the vacation she had been waiting for all year. I think it hit me a little earlier when I came home to a much emptier beach house and the impending doom of the next day's 10am check-out. In all of the back and forth driving, sleepless nights, frantic phone calls, bedside sitting/care taking our vacation had slipped away and much more-so for Mom. She barely remembered the actual terror of that Monday night in the ER, sweating through two pillows and blankets, crying out for relief, begging us to just let her go... instead she had formed hazy memories of fighting for her children whom she thought they had taken, leftover feelings of embarassement and shame over doing some things she couldn't quite remember or figure out, and days spent in a foreign place she never could quite identify with care and relief.
Mom and Dad made it home on Friday evening after a difficult car ride and a much needed night of rest at a hotel in Princeton, New Jersey. Dad detailed a memorable "pit stop" of sorts at, of all places, the Cloisters in New York City. Assuming a Metropolitan Museum of Art might have good handicapped accessible facilities and with a sense of urgency, Mama Marian and Papa Jim made a somewhat regrettable, but memorable rest stop in the city. I know that I've gone over the frustrations of "learning" the very unaccomodating ways of this world to the disabled, but I do believe this experience surpassed others on level of difficulty. Mom got in and out of her wheelchair, climbed steps to more steps, waited for one guard to lead them to another guard to enter a private back entrance to more steps and different guards. Finally, bathroom privileges were granted and they decided to celebrate with dinner in the courtyard. Dad explained that Mama Marian, through much discomfort and returning pains, found great joy in the beauty and nature of the courtyard and the many birds that descended on her throughout their meal. That's the thing about Mom... she always takes the greatest of pleasures in the simplest of things, even when the pain and sadness is so abundant.
So, now we look onward to where we go next... Mom wants to go back to Dana Farber for her next appointment on August 6th. In the meantime, we need to find good relief and we need to find it fast. Dad and I are researching pain management clinics in Connecticut that are nearby, have a reputable neurologist on staff, and offer alternative procedures and treatments like Botox. Mom has another day of the Toradol remaining but cannot continue the medication after that. And the Percocet and muscle relaxers are not enough to cut the excruciating pain and discomfort. There is not much that we are able to do over the weekend, so tomorrow will likely bring many more phone calls, faxes, emails, and experimenting with "what might work".
I do want to let some people know how much they have helped us recently, as I'd be remiss in not giving thanks where it is more than due. Especially to those who are able to be so "hands-on" at home... Mary T., Andrea, Judy M., and (of course) Beth O. And also to those who continue to contribute to the "Friends of Marian" fund, help us with words, presence, knowledge, and even the seemingly small offers of support. It's funny how awkward it is when you're on the other side of these things. I've never known quite what to say to people going through illness, death, and hard times when they are not the closest of friends (or clients...). Somehow, though, it doesn't matter at all. The words, the details, the motions are so insignificant. What makes all the difference is that there are so many people willing to go through this with us, in whatever way they can or cannot. So, thank you, again... to everyone.
