It has been six months since Mama Marian's diagnosis, subsequent surgery, and the beginning of an onslaught of treatments. We are fortunate to have found a brilliant and kind neurosurgeon, a caring and genuine radiation oncologist, and everyone at Dana Farber along the way, as we have more time with Mom than many do with the same diagnosis.
Mom and I had an enjoyable trip back to Connecticut two weekends ago. We ate tons of Ellen's chocolate chip cookies and sang of-key along to oldies on the radio. And, I acquired the skill of successfully maneuvering Mom's wheelchair through any New Jersey Turnkpike rest stop!
The weekend was beautiful and Mama Marian had plenty of deck time in the sun. We also got to pick up Mom's fabulous new wig (sorry, "cranial prosthetic" for insurance purposes), which she absolutely adores! I must admit, I am a bit jealous and may be obtaining my own cranial prosthetic some day, just to get out of 30 long minutes of hair drying and flat ironing in the morning. We had fun trying it on Dad over dinner as well.
Mama Marian's home health aide, Beth, was able to help out on Monday, Tuesday, and Friday of last week and Mary T. and Linda Q. spent some time with her as well on Monday and Tuesday afternoons. Dad stayed home with Mom on Wednesday and took her to Dr. Rosenberg's office for her continued leg and foot pain. She had more x-rays there, showing no breaks or fractures again, just likely sprains, bruising, and soreness from her falls.
Mama Marian and Dad drove to Dana Farber early Thursday morning for Mom's bi-weekly appointment and Avastin infusion. Dr. Drappatz looked at Mom's x-rays and prescribed her a topical gel called Voltaren for the pain in her leg and foot. He believes that some of the confusion may be a result of "scatter radiation" from the six weeks of radiation therapy in December and January. It could also be the result of scar tissue forming from her surgery in November, seizure activity, or the medications that she has been taking to prevent the seizures. She has not had an MRI since April 30th and will not have another scan until July, as Dr. Drappatz believes that the tumor has been stabilized by the Avastin for now. He does continue to push physical therapy to help Mama Marian improve on her coordination and Mom is scheduled to return to McLean for PT this Thursday and Friday.
Aunt Beth is coming tonight and is staying until the 27th to visit and help out for a couple of weeks. Mom's usual home health aide (the other Beth!) is unable to come full time until July and I am trying my best to spread out my 12 weeks of FMLA leave throughout the year. Mama Marian needs someone to be with her throughout the day while Dad is at work. This has been one of the most difficult changes for all of us, but especially for Mom. However, if she does fall and break something she will most likely have to stop the Avastin treatments. The falls she has already had have been painful, terrifying, and have set her back considerably with regard to PT and independence. So, it's one of those things... one of those cyclical things that leave us with choices none of us want to make in the first place.
Mama Marian has been learning to get around on her new walker, one that Linda M. brought by for her to use last week. She likes it quite a bit, but is a little taken aback by its speediness (this from a woman who we used to call "Lead Foot Marian"!) Dad took her to one of their favorite places in Massachussetts yesterday where they used to drive an hour just for good Mexican food! Mama Marian got to try out her new wheels (yes, wheels) on a walk through North Hampton.
Aunt Beth comes tonight and tomorrow evening she and Mama Marian will go back up to Boston to meet with Dr. Jong-Lee, the neurologist who did the EEG last month during her overnight stay at Brigham and Women's Hospital. Hopefully, she will be able to go down and eventually off of the Keppra, as the Lamictal is up to full therapeutic strength now and her focal seizures seem to be more under control.
We continue to look forward to our week in Chincoteague and are so excited to spend some time with the wild ponies, beautiful sunsets, and lazy days on beach. Hopefully Jeff, Dou, and Lorien will be able to come as well. We are still waiting to hear whether or not Jeff is able to get the time off. Mom has already decided that she is going to find some way to bike herself to the beach like we've done in previous years. Dad and I are trying to find her a suitable chariot!
