The Good, The Bad, And The Hospice

It's got my name! and it is rather symbolic regarding life and transformation...

I remember cancer patients on made for TV movies talking about having “good days” and having “bad days” without really thinking about what that might mean. Today is a “good day.” Ry has been alert, his eyes bright and he has been responsive. Yesterday was clearly a very very “bad day.” His family and I, and even the palliative care doctor thought he was done for. We were all in tears watching Ry sleep, trying to will his vitals back to normal. I don’t know exactly what happened, but he seems to have regained his energy and everything about him is significantly improved since just last night. The doctor gave me a call this morning to let me know how much Ry had improved saying she has seen this before after discussing the whole DNR thing with a patient and that they tend to feel psychologically more relaxed and then start to get better. As much as I would like to think that Ry’s mind has something to do with this recovery, I have to say that I have my doubts, especially since he just revealed to me that he has not been able to hear for the last 3 days. I think it has more to do with eliminating the antiviral meds he has been on. His antibiotics are finished, and he had a few more doses of antivirals to go, but the doctor had them stopped and then poof! he’s all better. He still has tremors in his hands, but that’s getting better, he is still tired, but that is a given. All I know is that I thought for sure he was slipping away, possibly never to return again, and now he appears to be on the mend.

It had been about 8 days since I had updated the Doctor Log for our friends and family. Here is the entry to you all can get a better understanding of the past couple of days:

12282011-6th floor KP RWC

As of today he is much more alert and cognizant. Over Christmas Ryan was able to visit with his family including his brother-in-law and niece. He was the only patient in the PCU at the time so there was no danger of his niece spreading unwanted germs to other patients. Ryan was showing signs of lethargy at this time, so the visit was more for the visitors than for him.
Yesterday Ryan constantly slept. He was unable to maintain consciousness for more than a few seconds at a time. This was rather distressing to Nissa and his family. His blood pressure was particularly low again as well throughout the day. A palliative care doctor spoke with Nissa and Ryan’s family about hospice care and to go over a form more specifically stating what medical interventions Ryan would have in the event he lost the ability to breath on his own or his heart stopped beating. Nissa asked the doctor to explain what the family decided would be best for Ryan, however, Nissa did not think Ryan understood what the doctor said and he was nodding to make her go away so he could sleep.
The doctor suggested taking Ryan off of the antiviral meds in order to lessen his diarrhea. She also suggested taking him off of the TPN (intravenous feeding) because this form of nutrition can also cause diarrhea. Nissa and the family thought Ryan would not like this so the doctor compromised with just the medication. Ryan is starting a regimen of probiotics and Imodium to deal with his digestion problems. Since Ry has been off of the antiviral meds, he has become much more aware and has stayed awake for most of the day. His fine motor functions have improved enough for him to type on his computer a bit and he has the energy to flex his fingers as “exercise.”
Nissa went over the forms from yesterday with Ryan today and he acknowledged that he did not remember anything from the past couple of days and he wanted to revise a portion of the paperwork from yesterday. Nissa made sure both she and Ryan were well-informed as to what everything on the form meant by asking the RN for clear definitions of each medical term they were unfamiliar with.
The plan is to get Ryan home as soon as possible. This is contingent on 3 things:

The diarrhea gets under control and the rectal bag can be extracted
Ryan can be weaned off of the TPN and go back onto g-tube feedings
Ryan can at least sit up unassisted

Ry may have to be moved to a skilled nursing facility in San Jose, nobody is happy with this, especially Nissa. It is very far away from San Mateo.

Many people who have not gone through this kind of thing may be thinking, “Wow, hospice, that means he’s going to die right now, they must be giving up on him.” This is soooo not the case. Although the palliative care doctor was advocating allowing Ry to die naturally because of the severity of his condition and she explained that there are 3 major things she is concerned about for his care, Ry and the rest of us are not throwing in the towel just yet. The doctor said that the 3 things she was most worried about are:

1. Pain- Ry has been in considerable pain throughout this cancer process, but at least pain can be managed and Ryan should not be in pain for long with all of the drugs he has available to him. I think the most effect medications have been Fentinal (in the form of a patch) and Marinol (a synthetic form of cannabis given intravenously).

2. The possibility of blood vessels or arteries rupturing-All of the doctors we have talked to in the past week agree that if this were to happen, there would be no way to get Ry to a OR quickly enough to fix it so he would most definitely pass away. At least it should be quick and painless. It will be far worse for us than it will be for him.

3. The possibility of his tumor growing over his trach-if this were to happen, Ry would experience difficulty breathing which would be terribly frightening. The only thing we could do to help him in this event would be to increase his pain meds so he will be less aware of the problem. This was the most worrisome scenario of the three for the doctor.

We are looking into hospice because Ry is so sick right now, and for the immediate future (like 2 weeks from now at the most) there really is nothing more that we can do until he gets much much better. If he goes back on chemo, he will just end up right where he started in the ER and he can’t participate in any clinical trials until he is able to function on his own power, meaning he needs to be able to walk and be somewhat independent. Clinical trials are pretty risky, especially the ones we have narrowed down for Ry. The only ones left are Phase 1 trials and in such trials the objective is not necessarily to find a cure. Most of the time the research is geared toward figuring out the side effects and the dosage tolerance.

There are no guarantees anything will work. Heck, the proven stuff didn’t even work, so Ry really doesn’t have much to lose. I suppose his quality of life and comfort may be at stake, but Ry is such a fighter, I wonder if quality of life means something different for him than it might for the rest of us. I wonder if fighting for his life, and living no matter the cost to himself, is what makes life worth living for him.