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.