She's Back In! Now She's Home Again!

No kidding, Sandy had to be admitted again on Friday. She made it home Saturday afternoon, but what a nuisance it was.

We had an appointment with Dr. Cameron on Friday, which confirmed Sandy’s terrific progress. He removed the drain from her back and the fifty-odd staples that were used to hold the incision together. I think Sandy was happy to have the staples removed—simply because it felt like progress—but thrilled to have the drain removed. This was the drain that was added nearly a week after her surgery, inserted through her lower back on the right side and behind the liver. Regular imaging had shown a collection of fluid adjacent to the liver, and the drain could easily allow this to resolve itself. It sounds pretty simple, but consider the fact that you then have a tube sticking into the far reaches of your insides, and protruding out through the one part of your body that you can lay on. Adding to the discomfort, the drain tube is also reinforced with a rigid wire that has kind of a hooked end to it to keep it in place. You can imagine her relief to have that one removed.

All seemed to go well during that appointment. Dr. Cameron also allowed Sandy to start to sip very small amounts of clear liquids like chicken broth and jello. She would stay on the TPN/Anna Nicole, but that still felt like a home run…right up until the time the phone rang at home two hours later to alert us that Sandy’s potassium level was elevated.

“We’re sure it’s just a fluke, but would like her to get another blood test.” Off to the ER at GBMC to get another blood test, and so that she could be admitted there if she needed fluids. My impatience with the process there (4 hour wait) and some quick coordinating with Hopkins allowed us to go to the Patient First clinic off Falls Road. Not an ER, and no lines to wait in. Maura (Hopkins Transplant Program’s Nurse Practitioner) coordinated with them by phone to assure that they would take the blood and send it through their lab immediately. Sure enough, her potassium was elevated at 6.5. Ordinarily, anything above 5 is a problem. The concern is that high potassium can cause heart or kidney problems. That is not something we want to invite. The decision was made to admit her back at Hopkins to administer fluids. Downtown we drove. A mere six hours after the mini-adventure began, Sandy was settled back in a room on the transplant floor at Hopkins. And only a couple of hours after that she was given fluids. And that is where Sandy spent her Friday night and part of Saturday.

There is a bit of a bright side to this chapter, too. Because her potassium was high, and Anna Nicole is loaded with potassium, she could not take her Anna Nicole bag on Saturday night. The home infusion service delivered a simple bag of clear fluids for Saturday and Sunday nights, and the rest of her nourishment came from broth, jello, and even a very small bite of pasta last night. Clearly, that was stretching the orders, but she tolerated it very well. The home care nurse will send fluids from the drains to a lab today to be analyzed, and Sandy will take the same clear fluids tonight. If the lab results are good, and the enzymes from the pancreas are sufficiently low, she may be able to begin eating more... fluids. Real fluids…real food type stuff…and not the bag. There is a pretty good chance that they will just reformulate her TPN with less potassium, but keep your fingers crossed.

People wonder, “What’s the plan from here?” The plan is simple: let her heal. She has a hell of a recovery ahead of her, and that will take months. It is likely that Sandy will face another round of chemotherapy as soon as she is strong enough. We have an appointment with the oncology team on April 9th to discuss this in more detail. More chemo won’t be fun, but you just don’t want to leave this up to chance. When you are in a fight, you don’t hit your opponent only a couple of times and then watch and hope that they fall down. You beat them down, over and over, until they are bloodied and no longer have the will to fight. You approach a difficult and rare cancer like this in kind of the same way. Her surgical results are very, very good. More chemo is the insurance, the extra punches that you hope will put and end to this thing once and for all.

Sandy’s next appointment is on Friday. Barring anything dramatic happening over the next few days, I’ll let you know what comes out of that meeting sometime over the weekend.