Vanderbilt December

10 December 14, 2024

We finally completed Cell harvest yesterday morning on floor 10. And we have officially started KD Pace chemo. 

It has been an ugly road. Cathy has been on a state of delirium for days and it’s severity has grown more intense in the last 48.

Cathy has been transferred to the ICU as of midnight last night for uncontrolled pain/rage/ anxiety/ delirium and a dangerously high BP (240/110 at one point) with a HR in the 130s/140s.

She quit taking meds orally days ago - completely non-compliant and combative.

She has to be restrained at times to administer things.

Since midnight the ICU has brought down her BP and is working with other departments to better manage pain. Doctors believe delirium is more than pain. We know a raging uti is present and the right antibiotic has been applied, but investigative diagnostics continue.

Right now she is partially restrained in the ICU and the super chemo is hooked up. ICU staff and an army of doctors are managing life while cancer doctors govern chemo.

The attending physician for icu included me in the rounds - a room full of doctors and nurses and me and Cathy. I was impressed and pretty convinced she is receiving the best care available. 

Goals are :

1. maintain ability to administer the chemo
2. Manage pain / delirium/ anxiety with goal of bringing her out of delirium to point she can converse with care providers and others around her .. but control pain
3. Manage other aspect of her disease and state that can be life threatening

Hopefully we will bring her back and return to the stem cell transplant floor, - but it is not a requirement.

Road ahead is foggy and I will keep you posted best I Can

11 dec

They have introduced a fentanyl patch for pain, and it has made a real difference in Cathy’s comfort. Restlessness and struggling have been replaced with resting and calm. She is sleeping more soundly and for longer periods.

They have introduced a feeding and med tube. Cathy has not eaten in a week and they have begun a nourishment regiment.

An MRI of the brain has been ordered to rule out malignant intrusion into the brain, but the decision has been made to hold until the chemo regiment is done (a 4 day run of 24 hour meds that would have to be stopped to do an mri)

In summary, I think We have made progress in pain and comfort mngt and now will start working to “bring her back to us” so we can talk to her and she can talk to us.

I feel like she is a little closer to being with us today, maybe a little - I was able to aggravate her to the point of “what ?!” And she did stick out her tongue for me a few times. (very dry mouth and I use mouth swaps to try and keep some moisture in her mouth )

We are day to day here, future beyond a few days out is still uncertain

I will keep you posted

12 Dec  

Oncologist are puzzled by Cathy’s delirium and inability to converse at some level. Phase 1 of chemo ends at 0700 tomorrow morning and she will have a 24 hour break Docs (cancer , icu etc) believe we are missing something.

The leading thought is the brain itself. Either a physical , structural problem or an infection or swelling of the brain. The # 1 diagnostic yet performed is an MRI of the brain. Other diagnostics include a spinal tap. However, they will not do a spinal tap before an MRI.

 So we are lining up the stars to be able to run her thru the tube in the am when the chemo bags are empty.

It’s tricky , patient compliance is required, but we have met with palliative care and we have a plan to essentially sedate her to reduce risk of test failure. The read is pretty fast and this will inform us of what’s happening. They have up’d her fentanyl patch from a 12 to a 50. It is noon as I write - but today Cathy is crazy Cathy but more alert , aware and can communicate some . I have told everyone that “Cathy is trying to tell us something and none of us are getting it “ So let’s get the last two diagnostics on deck so we can execute as soon as chemo allows

I will keep you posted

13 Dec update on Cathy Report

Cathy has improved in several areas.

Cognition- albeit difficult because of a dried out tongue - Cathy is talking and engaging with people. She can communicate pain and can do basic conversation. She is present. She is somewhat non-sensical most of the time, but we attribute that to her being higher than a kite. She is on fentanyl 50 and an opioid stronger than morphine and a very powerful anti-anxiety med.

Given the level of improvement in cognition and a dissipating of delirium, docs are less anxious about the MRI. In rounds this morning - that was my 1 question : “if cerebral edema and life threading cranial pressure were happening would we be seeing this engaging behavior ? " Every doc in the room said - no sir, we would see just the opposite. - dropping bp, lathargic, deeper delirium.

I think chemo is having an effect - visible tumors on the chest, ribs and right side of face are getting smaller. Bowels are working.

Theory is the antibiotic for the killer UTI is doing a lot and perhaps that bug was doing more damage than we knew. We are on day 5 of a 7 day kill med protocol. I asked if they retest- and the nurse said “ no, that is such a bad ass antibiotic we do not retest. It works in 7 days.

Way ahead- in the next 48, I think we will play with pain meds and seek to get more of Cathy back without losing pain mngt ground. MRI is not considered stat and I suspect we will not get one tomorrow or Sunday give the new thinking and the fact that staffing is low on weekend . only stat mri will happen for those patients who rank higher. I suspect Monday . 

We are damn sure in a better place today than yesterday..... and believe it or not Cathy is watching Aqua man on tv as I type this. Amen.

I will keep you posted

14 dec

Now that we have pain contained, and we have a more comfortable Cathy, but higher than a kite - the Strategy is to start stepping it back to achieve a more sober Cathy so we can start setting conditions for getting out of ICU.

Feeding tube. Still in place b/c there are a lot of drugs to take and if she can’t or won’t - feeding tube stays. Cathy is complaining - I’m starving , I want to eat. We explain again how that can come about. Today we were able to take steps and Cathy ate a few bites of jello and applesauce and drank small amounts of water. They will build on this progress

Cathy is talking and animated at times. She had folks in stitches this morning. So, In the spirit of a-little levity here is a list of funny shit Cathy says

 ••••••••••••••••••••••••••••• *funny shit Cathy says

“Well shit kevin - you are the one letting the kids lick their fingers from the dorito bag “

“Puppy ?? Am I getting a new puppy ? “ Yes you are. “Good , add a new car while your at it. “ good job husband “

“First of all- you have macaroni and cheese all down the front of your shirt.(total hallucination)  Second of all , you have grease dripping off your forehead ……. Third ….. and she dozes off.

“Stop with that shit kevin - we need to go to the hospital and make a shopping list and first damn thing on it is popsicles . I want some damn popsicles

“ Nurse: what should I call u ? Darling ? Cathy: “well, I’m kind of digging that- flattery will get you everywhere “

“Kevin What is a cow doing in the ICU ? “

“I don’t think this train is moving very fast “

“Well that is profound, good job”(clapping her hands)

And the one that had us all in stitches : At rounds with 15 doctors in the room - “well I did take a shower today…. Well - a sponge bath really, and you know what I’m saying - I got that girl good & clean - if you know what I mean (gesturing to downstairs). “

Attending physician wearing a tie and classic white lab coat, Slightly blushing – “ Wow, she is a different today.”  Me still laughing : yes , this is the funny Cathy we all know and love. She is coming back.

 I’ll keep you posted

15 Dec update on Cathy - MRI happened. No Brain tumor.

No brain tumor puts us on a much better “return home” trajectory but I suspect it go a lot slower than we want.

More on that later. Cathy may be alittle fuzzy on details but is fully engaged with those around her. At rounds this morning she was querying them all on their ages.

One of the young male residents - I’m 26. Cathy - “yeah - you look like a hardy 26 year old” When she got to the attending doc (49) Cathy says - damn, your old, someone get this man a wheelchair.

It’s been funny shit like that all day.

The way ahead and obstacles in our path

1. She is in the ICU

2. She has a feeding tube. Feeding tubes have a step down protocol. You just don’t snatch em out. And Cathy has not done well on small trials of food and water (coughing)

3. She has a fentanyl 50 on as part of pain mngt . These things have 3 day life cycles and wean off protocols I think these obstacles will require a lot more time to overcome than we want.

Way ahead : My guess is, Cathy will graduate from ICU and spend time on the 10th floor getting her “normal” capabilities (eating and drinking and taking meds orally etc) back before Vanderbilt discharges her.

The team supporting us at Home should continue mission and use our worst case dates to plan off of - a return of around 22-23 December. It may be alittle better than that, but I don’t think so.

⁃ farm watch should continue

⁃ Eggs processing and storage should continue

⁃ Orders should continue. Will be a big orders week with it being last cycle before Christmas + a Newsletter hits Tuesday. Brace for serious packing Wednesday-Friday

 ⁃ Jamison runs market Saturday.

- Team effort organizing Toyota for fulfilling of orders.

⁃ For those providing support to Jamison, please keep that going. Thank you for your support

⁃ Mr Rick - we will do another pay cycle. More to follow. 

Will keep you posted

16 Dec update 

This place is funnier than a barrel of monkeys (yes - that is sarcasm) 

Ok - so rounds this morning went fine - final salvos in the direction of doctor so they can get her out of ICU and we can makes steps toward getting out of here.  No serious pain meds in 12 hours , anxiety low, delirium all but gone . Pain controlled . Real progress  - just that little pesky feeding tube to deal with

So the word is we will move to 10th floor like I thought - but before we do we have to do that little swallow evaluation- step 1 in starting the conversation of removing the feeding tube. 

So the lady comes in and I can already tell this is not going to go well. Cathy joking around alittle but that is because I dont think can full appreciate what the lady is going to do with that camera probe. 

The whole thing does not go well. Cathy does not do well and miss priss is gonna go write her report-- you know the types - you can spot them a mile away. Their area is a periferal area that does not get enough attention but they know they can make your lives miserable and they do. 

An hour later - an NPO - no drinking and eating.  So much for all the progress we had made. 

What are the implications of a feeding tube staying in place and a NPO ?? 

About another week in Nashville.  Thank you, may I have another 

So now we will hang out on 10 floor for a week eating ice chips and waiting for someone to decide - hey this lady has to eventually eat . Let’s get this damn thing out of her nose she can start doing that and maybe they can go home  

I love this place and hate it at the same time. 

17 Dec update 

Broad Situation.  The narrative as we know it may be changing. 

Chief Oncologist visited Cathy today and  told us the strategy may have to be adjusted. He will decide based on MM labs which return in 36 hours but he voiced concern about her over All state (feeding tube, weakness, pain etc. )

Old narrative- Come to Vande, harvest cells, start KD Pace chemo , finish it at home. After holidays, come to Nashville to get new cells. Stay 36 days. Go home

New narrative developing. Cathy not medically ready for discharge. Stay in Nashville through KD pace and potentially add another chemo strategy on top of KD Pace & before cells get back in mid January, All the while staying here in Nashville. 

Current facts 

1. MM labs were drawn today. Results in 36. this will inform the strategy. 
2. Cathy is out of ICU and on hematology floor. Staff good, this is their wheelhouse. 
3. Cathy has failed the swallow tests and an NPO out in place (no drinking or eating) and feeding tube stays in place. 
4. Swallow assessment redo on Friday. 

How is Cathy doing ? 

 Today real groggy but we deduced it was the fentanyl 50.  Early in the day we changed to 25 and should get a new sight picture of her alertness this evening. 

She is already sharper. This should set conditions for good swallow training and re-assess. 

She is hungry and thirsty but is hooked up to nutrition. She is getting everything she needs. 

Way ahead 

1. Mm labs & docs assessment 
2. Swallow assessment on Friday 
3. A passing grade will find us likely eating solid foods this week end 
4. My guess is we will finish KD pace in patient (KD pace day 13 & 14 is 22 -23 December) 

What happens beyond that ? Don’t know. I can speculate, but that is not helpful. Let’s see what MM labs bring

Next blog - Labs and More dragons