I rode in the front of the ambulance while Lori was in the back with the EMT. We drove the 1 hour transit to Indy, and they wheeled her up to the sixth floor to her room in the MPCU. The University Hospital has excellent resources, but aesthetically and common sensically (I know it’s not a word…right?), it is unsettling. The warmth and welcome of the smaller and newer Arnett hospital was replaced with cold, sterile halls and rooms which bare more resemblance to airplane galleys than to inviting habitations for potential healing. I’m being dramatic, but I really did feel a sort of homesickness as soon as we made our way to the new room here at this hospital.
To be fair, over the past 24 hours, I’ve begun to warm up to the quirks of this room which includes nonsensical lighting options, a white board with no marker, useless lockers with no shelving, a lidless toilet built into a very strange set of wild west saloon-like swinging doors (which also have no purpose), a weird couch thing which is wildly inappropriate functionally for the room, literally 5 large personal-use trash cans which is 5 times more than we need, and on and on. The only things I’ve found more ill-suited for critical patients is probably the parade of inept hospitalists they insist on marching in front of us with the closing/opening of each shift!
When I tell people about what it’s like to navigate the world of cancer treatment, I usually share the frustrations of dealing with doctors who are not oncologists. The past 24 hours has been my culmination exercise, and I now feel I can see the hospitalist tactics before they try them. Three hospitalists have seen Lori each with no knowledge of her history. Her record is available for review, but they don’t have time for things like quality review because they are the only Dr on shift for multiple floors at a time. So, Lori gets to explain the past 14 months of history to each of them with each shift change. They all offer nothing in terms of a plan or even a quality opinion about the causes of her newest pains. They are good at general medicine and acute care for known diseases but they are simply confounded by cancer patients. I talk oncology better than they do, and it’s frustrating. At one point, Lori was brought to tears by the way they seemed to just not care. No empathy.
Through the fog, we have been able to glean some quality information however. It appears the source of the fluid collection and possibly some of the pain is related to liver malfunction. The cause of the liver problems is not yet clear. It could be that cancer cells are beginning to take over the organ, and it could be that there is an infection from another source. The scans don’t show definitively that it is cancer, so we don’t know what going on yet. Hospitals are minimally staffed particularly on weekends here. We were told we’d see a liver specialist but they aren’t in until Monday. Same for the physical therapists. We were fortunate to get some time with the on-call oncologist, and that was a huge breath of fresh air.
The highlight of the day was speaking to the oncologist. He showed empathy for Lori’s position (as oncologists tend to do), and he understood the details of her history before he entered the room. As we mentioned previous treatments, he already knew about them and where we were treated. For example, we mentioned that she had radiation done in November, and he knew it was with Dr. Carey at UNC. It was like finding an ally behind enemy lines. He was in the fight WITH us. He was reassuring in some ways. In particular, he thought we should be able to receive the needed acute care to control the liver-related problems in her body while proceeding with the plan to have the gamma knife procedure on Wednesday followed by chemo sometime thereafter.
I also spoke with Dr S on the phone today, and although he hasn’t seen all of the scans, he thinks the liver trouble is likely from the cancer. He sees three options:
1. Gamma knife Wednesday and chemo Thursday
2. Chemo immediately and no gamma knife at all
3. Discontinue treatment altogether and focus on comfort care
His recommended path will be based on how Lori is doing Tuesday morning when he evaluates her. On Monday, he has 42 patients for clinicals. He said his previous high for one day was 35! Also, his dad is still in critical condition in a hospital in Tennessee. I feel bad for him, but his job is important, so he keeps on working. He will come to Lori’s hospital room prior to the start of his work day on Tuesday morning. I think he’ll be fine with whatever we want to do, so Lori and I will discuss it and hopefully learn more about the liver issues tomorrow. If the liver is in really bad shape, it really should be our focus, and the only treatment option we have is chemo. Doing the gamma knife for such minuscule spots on the brain might be pointless. However, if the liver is doing relatively well, I’m thinking gamma knife then chemo. It’s not a good prognosis overall. Her body is definitely having some serious problems now, and it’s possible that we don’t have a lot of good medical options.
Her prayers, on the other hand, are stronger than ever, and she is really relating to the nursing staff. Tonight we prayed with my dad and a couple of great friends. When my dad began to pray, the medical equipment in the room began to beep rhythmically. The constant beeps reminded Lori of how constant God is, and she thanked Him for that reminder. She was eloquent. Phenomenal. She’s also inviting the nurses to pray, and they are really warming to her quickly.
Tomorrow, we should meet with a liver specialist early in the morning. Hopefully, he has ways to control the liver trouble. We also pray that Lori has a speedy recovery and is strong for the gamma knife and chemo follow-on. I want to go home where the toilets are normal and trash cans are placed based on the logical demands of the room.