You Love Me Enough

This is a difficult post – so if you are not somewhere that you can sit and absorb, please come back and read it later when you are somewhere calm, safe, and where you have reaction time.

Tuesday night, Roy said, “I think you love me enough to let me go.” And I replied in the affirmative (as much as it will break me). He is so tired, weak, exhausted, and aching/in pain. He has not been able to be out of bed for a week at all. When the therapists got him up to sit on the side, I thought it was a starting point but Roy remarked later that it was harder than he anticipated – he is so weak. He explained that this whole process has been the hardest thing he has ever done and he was not sure how much more he could take. The past not-quite-a-year has been a slip-n-slide from we need to look closer at those lymph nodes to a series of X-rays, CT scans, MRIs, biopsies, infusions, hospitalization, and Emergency Department visits. As he was telling me this, he was sporting two IV ports, his Smart Port, an oxygen canula, a feeding tube in his nose, a whole set of EKG tags and wires, a box to monitor his blood pressure and heart rate, mechanized SCD leg compressions, as well as a cord hanging from his ear (pulse). The list of what they were treating at All Saints had grown from six things to twelve.

We learned on Tuesday that the nodule of concern in his lung is likely to be metastasized cancer from his liver; the pulmonary team was waiting to hear back from Roy’s oncology. Once cancer escapes the liver, a patient is not eligible for transplant. The physicians notes also indicated that he is teetering on the verge of hepatorenal syndrome (HRS) and the nephrologist mentioned on Tuesday the possibility of needing dialysis soon if his kidneys did not rebound. They had emphasized that he would likely go through the HE process repeatedly until a transplant could be had – some liver patients are in the hospital every few weeks. Part of his disease shows up in tremors and “hand flapping” and part of it is now causing him to have shortness of breath (fluid pressing on already compromised lungs). Roy’s chest CT also showed glass-like shards as well as scarring and more pleural effusion (fluid in the lung cavity). His electrolytes are all out of whack – the liver is essential to many, many processes and when one thing gets off, the body experiences cascading impacts.

Wednesday morning, Roy greeted me with an emphatic declaration, “I am done.” He wanted to sign a DNR (do not resuscitate) order and go into hospice. Roy emphasized how tired he was, that he was not able to sleep, and that he was fighting a battle that he could not win – without the slim hope of a transplant, he was just going to be more miserable and in more pain. He emphasized that he wanted to go home. He signed the DNR. We told his team that he wanted to be released home to go on hospice. We cancelled the barium swallow test. And we spent the day coordinating a change to hospice care and arranging his transfer from Fort Worth to Bryan. This meant meeting with the palliative care doctor, the chaplain (who handles out-of-hospital DNR), and a social worker in Fort Worth as well as phone calls to coordinate with Hospice Brazos Valley for them to admit him. In between the nurses removed the majority of Roy’s extra bandages, IV ports, pulsometer, and feeding tube. They stopped some of the medications and prepared him for transfer. He kept the oxygen and the catheter.

I spoke with multiple members of his All Saints care team on Wednesday. They supported his decision and agreed with his assessment of his situation. Pulmonary came back to tell us that he looked up Roy’s weird alpha-1 and it does exist and it makes Roy even more unusual – his variety is like .001% likely but the researcher said it does completely explain the liver failure. Hepatology and nephrology told him to find ways to enjoy the time ahead as much as he can. His Methodist team and his PCP indicated that he was doing something brave and wished him peace in the process.

Roy had another paracentesis Wednesday in preparation for his transfer. The hepatologist and nurse removed an additional 2.7 liters from his belly. That’s a lot of fluid to build up in a couple of days and it is an indicator that his liver is having a lot of difficulty doing its work – it is “decompensating” at a greater rate and the ascites is veering into the “refractory ascites” phase which indicates that the liver is closer to failure. He got a big bandage over the site, but it is leaking at a pretty rapid rate so we are soaking up fluid and replacing bandages as it goes along. In some ways that leak is helpful as it relieves some of the pressure, but it also means he potentially is not dry or comfortable. Hospice and our Care Village are working on some possible fixes.

We are very fortunate to have a “Village of Care” that was able to respond quickly to this shift in path. While we were getting all the paperwork in order in Fort Worth, they were working on preparing our home for the delivery of equipment: hospital bed, bedside table, oxygen concentrator, bedside commode, etc. They rearranged the furniture so that he is now in a bed in our TV room/den next to his recliner. Dana drove up to Fort Worth on Wednesday to hang out with me (and distract me a bit) while we got things lined up and she led me home on Thursday while Roy rode in the EMT transport. The EMT who drove him down, Nathan, came in especially to take Roy’s case because he has experienced liver cancer/failure in his own family. His partner Layla stayed in the back with Roy for the trip; Roy and Layla had air conditioning, but the system broke on the way, so Nathan did not. They were so kind and funny.

The Village of Care is absolutely amazing and I am so grateful to each of you for being a part of this journey with us and stepping in to cover things and me when it is too much and I can’t quite take it all in. I still have not slept much, but the cats are happy and well (and maybe a bit annoyed that they are not getting playtime and treats throughout the day) and we’re getting Roy set up as best we can for whatever this next chapter includes. He has a DNR. He is now officially under the care of Hospice Brazos Valley. I notified all the specialists and cancelled all the appointments. Roy is choosing which of his medications he will take – ursodiol can help him not get too itchy from the bilirubin so he took that one. Rifaximin can help keep the HE at bay for a while so he took that one. He also had some lactulose yesterday for the same reason.

Roy is not eating a lot, but he is drinking a lot of Izze Apple, lemonade, and cranberry slushes. His primary food group at the moment is chocolate pudding with whipped cream – he has not been big on sweets the last few years so this is a definite change. He’s going to have a slice of cheese pizza later today. He was somewhat like Golum with that chocolate pudding in the hospital – he was not going to let anyone else have a single bite.

We are starting the process of bringing in some home health aides to provide for his personal care while he is in hospice. I am still figuring things out and this is going to be a complicated new chapter so please be patient with me and him. I am sure many people want to come visit him; I will be protecting our time together so that we give him peace enough to rest, so please contact me to set up a time for a drop by. He does have his phone again so if you have his number, you can text him as well. He’s currently dozing with a sports podcast playing.

I am concentrating on giving him what he needs, to do what he wants to do. I will deal with my own heart when things settle down – this is hard, but this is right for him. He said he was glad to know from his physicians and from me and from friends and family that they don’t think he is giving up but that he is making a thoughtful and appropriate decision for himself. He’s sure. He wanted to come home. He wanted to come home so badly that he was asking “Where is my truck?” yesterday morning when they were delayed to pick him up. Please give him your support as he undertakes this next phase – he needs to know that you love him and that you understand his decision.

If you have questions, I am happy to answer them – just email me at legislaw@pm.me and give me some time to respond. This is not easy but I can help you understand if you do not. I will do this for him because I do love him enough to let him go.

Prayers are always welcome.