Home from the Hospital

After a 24 hour hospital stay at Brigham and Women's in Boston, I was able to bring Mama Marian home last night. The seizure evaluation and EEG showed that there were not any seizures, but the "background brain waves show findings that were concerning for possible risk of seizures". Although this remains confusing, the doctors have explained that Mom appears to be having simple partial seizures (aka "focal" seizures) that originate in the part of the brain where the tumor resides. These seizures do not cause her to lose consciousness and, oftentimes, she is even unaware that she is having them. However, her leg, foot, arm, hand, etc... on the right side often begin to tremble and her emotional state changes afterward. This is probably the most difficult of all, because it is unpredictable and leaves us feeling disconnected and more unsure than ever.

Mama Marian was discharged with a new medication called Lamictal, which is both a seizure medication and mood stabilizer. Typically it is added to a patient's regular seizure meds to prevent this type of partial seizure that she has been experiencing. We picked it up on our way home around 11pm last night and so we are not quite sure how effective it may be yet.

Mama Marian and I had a great trip home from Boston last night. We stopped by Pat and Steve's to pick up Indiana, where he was frolicking in dog heaven (their backyard, big dog-approved house complete with cousin dog) and then continued on our way to Connecticut. Mom wanted to stop at the Picadilly Pub in Sturbridge on the way back so we had dinner there and then stopped by the nearby Roy Rogers to access their vending machines. It has become tradition to stop and buy Jody some 25-cent plastic monkeys from the machines there. We have yet to collect all ten.

Mom is sleeping right now as Indy brings her his toys one by one in hopes that she will wake up and play with him. We noticed some small seizure activity in her right hand this morning but otherwise things have been okay.

On a very sad note I learned yesterday that Tracy Sigman, a family friend, died Thursday afternoon after a two year battle with pancreatic cancer. Her daughter, Beth and I have been friends since we were little and she has been a huge support for me along the way... even up through Thursday morning as she checked in with me to see how Mama Marian was doing. Beth and family, you are in our thoughts today. I wish I had something better to say, something that would make this more "okay" for you. I know that it must at least be a relief to not have to see her in pain, uncomfortable and, most of all, just not herself. That, perhaps is the most disconcerting of all... losing someone before you have lost them, knowing that you will have to lose them all over again... waiting, grief, waiting, bits of sunshine, fear, grief, waiting, loss... As Beth said to me a few months ago, I will take any good days with my mom I can get. And, in between, you just do what you can do.

A Sigh... of Some Relief

First of all, thank you. Thank you to all of my/our friends, family, co-workers, supervisors, therapists (professional and as needed), and neighbors. You all continue to show up out of nowhere and swoop in when we need you the most and even when we don't realize how much we need you.

The past couple of days have been challenging to say the least. Throughout the day Wednesday Mama Marian progressively became less and less of herself and more and more confused.

After her nap in the afternoon, I helped her to put her prosthetic brace on her right foot and calf. As her ankle and foot straightened out into place, her foot began to pulsate as it had months ago when we initially met with the neurosurgeon. This was explained to be a neurological sign called Clonus, an involuntary and larger movement than the typical reflexive response of someone without a neurological condition. The Clonus continued for a few minutes and then subsided again shortly after, but Mama Marian continued to feel odd and "shaky".

By the time Dad arrived home that afternoon, Mom was having a significantly harder time with cognitive processing and completing sentences. It was terrifying and it felt like we were losing her one moment at a time. We were did not know what was going on at that point in time.

Fortunately, our many emails to Abigail Ciampa, the P.A. on Mom's team at Dana-Farber, were eventually followed up by a phone call from Dr. Drappatz, the neuro-oncologist, at 9:30. He told me that he was very concerned and wanted her to come first thing in the morning for an MRI, or that night to the ER if things continued to worsen. Dr. Drappatz suspected that the tumor was possibly growing or causing swelling or even causing a bleed inside her head.

So, we scheduled a morning MRI and follow up appointment for as early as possible the next morning in Boston.

We arrived at Dana-Farber and met with Dr. Drappatz and Abby a few hours after Mom's MRI at 8am. Dr. Drappatz gave Mama Marian some basic neurological tests and was able to observe some of the concerns we had been reporting. Mom could not remember certain words, had difficulty accessing some terms, and was just generally slower in responding.

However, Dr. Drappatz explained that the tumor has actually continued to show shrinkage on the MRI. There was very little swelling in comparison to past scans and the doc was very pleased with Mom's response to the Avastin overall. He suspected that she has been having increased seizure activity from the tumor and possibly resulting from the initial craniotemy in November. The seizures are most likely reverberating all over her brain and affecting the temporal lobe region, thus causing her to have cognitive and speech deficits in between and during the episodes.

We were relieved and thrilled to have an answer that did not involve growth or swelling of the tumor. Dr. Drappatz had Mama Marian admitted to the adjoining hospital, Brigham and Women's, where she is currently. They glued 28 electrodes to her head and monitored her through an EEG overnight to determine the seizure activity and carefully adjust her anti-seizure medication, Keppra.

Mama Marian and I just met with the Epilepsy doctor (Dr. Dinkin) on the unit and his crew of residents in tow. She quickly looked up at them and collectively referred to them as "House", as Mom's been watching the show religiously since cable TV entered the house after Christmas. As Dad continues to remind her, it's a little ironic that she became obsessed with a hospital show of all things, but now we're all a little attached as well.

Anyway, the docs explained that Mom is having seizures on and off. He also induced the Clonus in her right foot and reported that it was sustained for a time yesterday evening. They are going to add Lamictal to the Keppra regimen and continue to monitor how she responds. The docs also explained that the seizures are likely from the tumor itself. Although it is stable and even a bit smaller at this point in time, it continues to wreak havoc all over her brain. In addition, the scarring from her brain surgery in November may be "tickling" parts of her brain and inducing irregular activity.

Mom is making more sense today and we are able to laugh a bit about some of the things that have hapened over the last couple of days. The deficits from the seizures will hopefully be short-lived and begin to lessen as the seizure activity is controlled.

We may get to take her home sometime today. Currently, we are waiting on the doctors to consult, start the Lamictal, and then let us know how they would like to proceed. I will be sure to keep you posted as I am able.

A Hard Couple of Days

Mama Marian is sleeping in today and I am sitting at home with Indy on the couch, waiting for a call back from the doctor. Whomever it was to first say that this ride is like a roller coaster, I could not agree more.

After Mom's Avastin treatment three weeks ago she tapered off the Decadron (steroid). It was a ten day taper and so she ended it completely on Sunday the 19th. After that treatment, there was a week of amazing progress for Mom and she was actually doing so well on her own that the in-home services were discontinued through McLean and she was switched to outpatient PT.

However, this past week has brought changes that are hard to explain and, quite frankly, impossible to understand as more things continue to be along this journey. Mama Marian has had some difficulty with processing and memory over the last week and also began to struggle with muscle coordination and movement again. Word finding has been something that has been difficult since almost day one, as it is a symptom of many things... anxiety, exhaustion, side effects from the meds, and swelling from the tumor. We are hoping and praying (and I've done a little bartering of my own with God and whomever else will listen) that it's not the tumor. Mom's PA and neuro-oncologist are concerned, though, and want her to come for an MRI and follow-up appointment on Friday. I've also been talking with them about significant swelling in her right foot and ankle. Apparently, one of the side effects of Avastin is blood clotting. When Mom wakes up I intend to see how she feels about going to the ER for an ultra sound of her foot, as recommended by Abby, her PA. I'm sure she'll be less than thrilled with the idea.

So, we wax and wane all over the place these days. It makes happy days a little scary and sad days pretty unbearable. Last night Mom had a fall again in the bathroom. This was the first one in a while and, of course, they are always pretty frightening for everyone. It was kind of the culmination of a couple of days of worry, watching, waiting, etc... and I think Mom, Dad, and I just sort of lost it after that. The theme for yesterday seemed to be "This is the hardest thing we've ever done. Who knew anything in life could be THIS painful?" Mama Marian and I decided last night that we don't think we ever really believed that this sort of thing just happens to someone. I mean, you see it and you hear about it, but you don't realize how unreal it is until it's in your face 24/7. It makes you feel a little guilty and little blindly stupid for "the way you were" beforehand... not that anyone can change that or even should change that.

On a brighter note, Mama Marian and I took Indiana (my dog who came to visit) to the dog park in Avon yesterday afternoon. It was the most beautiful, heavenly place for dogs and people and the three of us had a lot of fun. It is bittersweet watching Mom enjoy the weather and take so much pleasure in being out in nature, but unable to walk on her own across a field or sit down in the grass, take a walk, or swim with her favorite grand-dog. Maybe we will go back there today if she feels up for it. We also spent time yesterday on the deck looking through all of the old photo albums, some I brought from home for her that we had been working on scanning and putting into new albums. I will be sure to upload some of them as soon as I can.

I will also do my best to post as the week goes on and as things change. Sometimes it's difficult to write when things are not going as well, but in the end, it also helps to not have to say it aloud over and over again too. I hope to have some good news to pass along later this week.