Hospital drama and the radical reshaping of the TN5

Jett hospitalized, Fri May 31

To say that the fifth trip north (TN5) has not gone as planned would be a massive understatement. The entire trip has morphed from an RV journey to New Hampshire to a rather desperate attempt to get to Massachusetts by any means available. After 5 weeks in Flagler Beach – rather than the planned 3 days – dealing with the consequences of a shocking cancer diagnosis for Jett, with a series of CT scan, MRI and biopsy procedures to fully identify the scope and severity of the cancer (answer: wide scope, critical severity) and at least a dozen radiation treatments designed to knock the cancer back on its heels, my primary goal was to get Jett north where the hospitals were better and her family and friends were available to provide emotional support.

For a while I was far from confident that I could pull it off. She was so ill and so mentally confused for two weeks that I thought she would be unable to travel by ANY mode of transportation. However, she improved markedly. First, some pretty massive doses of steroids were effective in reducing her brain swelling. Second, the radiation treatments took over and reduced the need for the steroids. Third, pain medication – oxycodone, hydrocodone and finally morphine – reduced her pain to a manageable level. By Tue May 28 she was well enough to be discharged from the hospital.

But there was a moment, after she was released from the hospital, when I thought I had lost the battle entirely. The discharge instructions omitted the steroid from the list of medications that she was to take at home. It was marked as “IV only” and since she would have no IV at home the nurse blithely scratched it off this list. I knew, by then, how critical the steroids were and should have noticed the omission. But I didn’t. She got no steroid on the day of her discharge, nor the next.

She became more confused, undoubtedly due to increased brain swelling. Besides, dropping a steroid “cold turkey” is a REALLY bad idea.

On Thursday morning, at her daily radiation session, the radiologist noticed her mental confusion and asked me if she was taking her steroid. I said that we had no steroid prescription. He looked somewhat alarmed and had his assistant look at the list of medications on the discharge order. She noticed the “IV only” notation. The radiologist quickly ripped off a prescription and handed it to me saying “fill this TODAY.” I did, but CVS could not fill it until about 6 pm. She was sleeping then and I didn’t want to wake her. However, starting around 8 pm I tried to rouse her to take the steroid along with her other medications. I was unable, for 2 hours, to get her to sit up or even utter an intelligible sentence. At 10 pm I called 911. The EMTs were able to drag her out of bed and elicit enough consciousness that I could drive her to the ER. They immediately gave her steroids and admitted her again.

I believe that if I had let her sleep that night without her steroid medication she would have died.

That was Thursday night. Friday morning her oncologist saw her and she had rallied enough to respond intelligently. He emphasized that she must decide over the weekend whether she would begin chemotherapy or go straight into hospice. He told us that we would be receiving a visit from hospice over the weekend to help with the decision. But if chemo was the choice, it had to begin IMMEDIATELY on Monday. “It can’t wait” were his words.

We had a rather sober discussion involving life and death on Friday and Saturday. The hospice people arrived Saturday afternoon. They were very nice and very compassionate but also very direct. Without further treatment, they said, Jett would be dead in 10 days. Not the kind of news that makes for a happy Saturday.

Jett’s son Joshua and his fiancé Cristina arrived Saturday night, driving all the way from Alexandria VA to pick up Rusty (see previous post). I was glad to have their company and not just to solve the Rusty problem. They were also instrumental in convincing Jett that chemotherapy should at least be tried.

I arrived at the hospital early Monday morning, fully expecting that the oncologist would be eager to hear her decision. However, by 10 am I had not heard from him, nor could I find out if she would receive her scheduled radiation. At 10:30 am I went to the oncologist’s office. He was with a patient so I asked the receptionist to see if Jett was scheduled to receive chemotherapy. No, she said, but she had an appointment on June 6. I got agitated, telling her that the doctor had as much as said on Friday that her life was in danger if she did not start chemo right away. She asked if Jett was hospitalized. I said she was. “Well, we can’t start chemo until she has been discharged.” That was the first I had heard that and I couldn’t believe it. “You mean that a patient, critically ill with cancer and hospitalized because of it, can’t receive chemo?” She said, yes, that is true. I said it was just about the dumbest thing I had ever heard and left in a huff.

Next stop: radiology. I asked if Jett would be getting radiation therapy. The receptionist looked at the schedule and said yes, she was due to be treated at 11:15 am. I pointed out that the current time was 11:12 and, to the best of my knowledge, no one had arranged to bring her down. “Oh,” said the receptionist, “you mean she is in the hospital?”

This was 3 hours after I had told the nurse that Jett was scheduled for an 11:15 am radiation treatment and 2 hours after I had told the hospitalist the same thing. Neither one acted on that information.

Jett’s second discharge, Tue Jun 4

At that point I was pretty pissed off and I ripped into the hospitalist. But that time Joshua had arrived and he had my back. He, too, was pretty upset that his mother was not getting the radiation treatment and that the oncologist was showing no sign of the urgency that he himself had said was needed.

Jett got her radiation at 3 pm and the oncologist’s assistant provided an explanation and a correction of the statement that “chemo can be given only after the patient is discharged.” She said that chemo requires a level of strength that is often incompatible with hospitalization. But, yes, it was possible to give chemo to Jett while she was hospitalized. Later I finally saw the oncologist and he backed off his statement that “it can’t wait.” In fact he said that starting chemo now (on Monday) might make Jett so weak that she would be unable to travel on Friday. Furthermore, he opined that waiting a week to start chemo would not substantially change her diagnosis.

Not at all the message he gave us on the previous Friday.

Jett was released from the hospital for the second time on Tue Jun 4. She continued to do well the rest of the week and completed her final radiation treatment on Fri Jun 7.

I proceeded with my plan to get her to New York via Amtrak where her brother Ray would pick us up and complete that last 170 miles of the trek to Worcester MA.

Flagler Beach will be forever memorable and not always in a pleasant way. It was time to get out.