Since we came home from our Hospital/Hotel adventure on Saturday, things have been more or less quiet. Over the weekend and through the early part of the week, Gail’s throat pain got worse and worse.
So let me tell you, I am in LOVE with the care she is getting from the University of Maryland Medical Center. I found her doctor’s e-mail and shot him a note. He answered in THREE MINUTES! I asked about pain meds, and he said that, as dumb as it may sound, leave the hydrocodone-acetominophen alone for the rest of the day and just get some Extra Strength Tylenol. Take those for the rest of the day, along with as much ice cream, popsicles, etc., that she can stand. “Oooh, she’ll HATE that,” I said. Then he called his nurse and she called me and we have her PET scan all set up. That will be tomorrow at 9 am.
Today, we met Dr. Suntha, the radiation oncologist. Seems like a great guy.
First some good news. They finally gave Gail something to deal with her pain. Fentanyl. They wrote her a prescription for skin patches that she will wear for 3 days at a time. They also gave her a couple lollipops to kill the pain “right now.” They lasted about an hour, and it will take about 12 hours for the Fentanyl to reach to reach “therapeutic levels” in her blood. But once it does, the pain relief should be constant.
I didn’t get a lolly. But we both snagged a couple U of MD Radiation Oncology bracelets.
We had a whole team looking at Gail again. This time from the radiation oncology group — these are the folks who would treat Gail’s cancer with radiation, if that’s the way they decide to go. At this moment, it doesn’t seem likely that’s what they’ll do.
For one thing, Gail has had Scleroderma for a long time. Radiation therapy has side effects on normal skin. On skin affected by Scleroderma the side effects would be much worse.
So, here’s what I’m guessing will happen, based on what they discover in the PET scan tomorrow. (For those of you who haven’t had a loved one in this position before, it’s like a CT scan, but they inject you with radioactive sugar water. Tumors love the sugar water, and they light up like little Christmas bulbs when a radiation-sensitive picture is taken. After the PET scan, they will know for sure how large the tumor is… there’s only so much that can be seen by the eye).
Now, if the only thing that lights up on the PET scan is the tumor and tumor alone, then I suspect Dr. Strome will remove the tumor, cut down to clean margins and call her cured, barring a recurrence. If they see anything in the tumor during surgery that makes them suspect the cancer may have spread, then they will likely do a selective neck dissection, where they remove some — if not all — of the lymph nodes from the left side of her neck.
If the tumor lights up, along with a couple lymph nodes, then it’s an easier decision. Cut out the tumor, do the neck dissection, and follow up on a monthly basis to see if it pops up anywhere else. Depending on how many lymph nodes light up, they may want to follow the surgery and neck dissection with chemotherapy.
If the tumor lights up, and it shows that it’s already spread to another organ, like a lung or the liver, then the doctor removes the tumor to help make Gail more comfortable and care turns towards “palliative care…” keeping her comfortable. If it’s already spread (not likely) to a lung or a bone or the liver, then doing a neck dissection is like closing the barn door after the horses got out.
So, there’s still more we don’t know than we do know. What we’ll hope for is that the PET scan shows just the Tumor lighting up — and nothing else.
Gail and I are both quite “zen” about this. We all have our tickets punched already in a manner of speaking. It’s just that nobody knows when his or her bus is scheduled to leave. We are going to take this one day at a time and will count on you all for your positive energy.
We won’t know anything more until after we meet with Dr. Strome on Monday morning. We’ll have the whole game plan laid out for us then. But even then, there are variables, things that could change, new directions this thing could take, all depending on that nasty little lump in Gail’s throat, what it’s already done and what it decides to do in the meantime. No simple answers, no simple solutions.
Day at a time.
At least the dogs are handling the stress well.