New Port, New Chemo, New Surgery, OH MY!

Or "Ommaya!"

That was a really bad joke, but seriously, I've been on a steady diet of iced coffee and oatmeal raisin cookies from Au Bon Pain. What do you want?

Dr. Donadio stopped back in this afternoon with one of the cancer center nurse practitioners, Allison, to let us know that it is looking very likely that the cells detected in the cerebral spinal fluid from yesterday's LP are positive for transitional cell carcinoma, which is the cancer cell type we've been seeing all along. This in turn has caused meningeal carcinomatosis, which is the inflammation of the meninges discussed in the previous two posts. None of this is a huge surprise based on the fact that Dana Farber was fairly certain of this diagnosis from last week's MRI's. Regardless, it is affirming suspicions and our fear that the cancer has spread to the tissue surrounding the spinal cord and brain.

Tomorrow or Thursday, she will have what is called an Ommaya Port placed in her skull. Sounds really dramatic, I know, but it is essentially the exact same thing as the port she had placed a little over a month ago, except this port will directly access her spinal fluid instead of her blood stream. Through this port, spinal fluid can very easily be removed, and Methotrexate (her new chemo cocktail du jour) instilled. She'll have treatments 2-3 times per week right in the office at the St. Franny Cancer Center, and they'll check the spinal fluid regularly to make sure the cancer cell count is decreasing, meaning the treatment is effective and therapeutic.

As we see the cancer cell count decrease, they may spread out the length of time between treatments. And because technically the chemo she was on during the trial did in fact keep the tumors elsewhere in her body from growing, that may or may not be reintroduced later on.

The inflammation of the meninges is what has caused the unpleasant symptoms Mom has been experiencing, but thankfully the nausea, headache, vision, and hearing changes have been drastically improved since starting the IV steroids. Her dizziness and weakness with getting around has improved somewhat, but still poses some pretty serious safety risks. A consultation with physical therapy today indicated that she might benefit from at least having a cane and/or a walker at home just for the times she's feeling unsteady, and she may require some physical therapy at home just to rebuild some strength.

Obviously, this is not the most uplifting news. Cancer is something Mom will live with for the duration of her life, because a cure is highly unlikely. This is not to say that she is terminal, or that we're calling it quits, but rather we are shifting gears to make sure we are balancing aggressive treatments to produce the best quality of life.

As you can imagine, Mom has an extraordinary amount on her plate right now. She runs a business and a home, and some changes are going to have to be made. We are well aware that her INCREDIBLE network of friends is chomping at the bit to be of service, so we are reinstating the Helping Hands network in full force. She has already mentioned she might like to start meal deliveries again, so stay posted. But beware, she is an organic/whole grain/wheat grass/soy milk/tree hugging hippie these days when it comes to her food selections... so if you INSIST on making cookies or something- you might as well just deliver those to me directly, okay?

Gwennie and I are going to be spearheading the "Operation Mom" team at home this coming semester. Our goal is that one of us is always home, creating as much continuity as possible, but also giving us each a partner in crime with whom we can share this experience. I know you're all thinking, "don't burn yourselves out, she has friends and family who want to help, etc." and believe us, we are fully aware of what amazing resources we have at our fingertips. Each and every one of you who's offered your support will no doubt be called on several times, and it is because of those offers that we'll be able to take care of ourselves and the best care of our SUPER MAMASAN!

My mom and dad (in for a quick 48 hour visit from Tejas) are a two person percussion section right now, catching flies, passed out in their respective recliners. Wish I could post this to youtube.com.

Oh, and because NOTHING is ever simple. Guess who's home with mono? Go Gwennie!