Chemo Break – Recuperation

Thank you, again to both of you.It is hard to be the caregiver when I am watching the person dearest to me in decline, but still I want to be the one to care for him. I have a hard time imagining my life without him after 40+ years so I just avoid going there. I know that I want to survive in good health to be a help to my daughter who is considering expanding her family. There will still be joys after this to experience I keep telling myself.

@ Lainy: We are having different aspects of Pete’s care in different hospitals. The liver specialists and surgeons were at Seattle Virginia Mason. The hospitalizations for infection were at St. Francis and St. Joseph in Federal Way and Tacoma, WA. His main doctors (primary care, GI, oncology) are Group Health physicians. I found them willing to provide referrals for second opinions outside of Group Health and to be available for calls. When Pete was receiving chemo, the staff at the Seattle Group Health Chemo Infusion without exception were kind and competent. My concern throughout all of this is that Pete’s illness is really two serious health issues layered one on top another. Both of these (PSC and CC) are serious and unusual to the point that even mature, experienced physicians may not deal with them very often. Within this system all the docs have access to the computer with their combined care reports/notations, CT scans and labs. I think that helps.

Hi Lainy. I appreciate your thoughts. I was surprised with the response from hospice regarding the antibiotics. I have a call in to Pete’s regular doctor to discuss. It seems to me that if taking antibiotics holds off the sepsis, he should be encouraged to continue. I talked to a nurse in the office who says there is a “gray” area concerning treatments that are for the purpose of prolonging life. It looks as if they are thinking that antibiotic treatment continues to place us in the palliative care category even though there is nothing to prohibit the cancer progression. That may be correct. I believe that I can make a case for Pete to receive hospice care; however Pete is concerned about the intrusion of hospice care in his life. Have decided I’m not going to really push for it until he accepts it.

In regards to the oncologist, I do believe she is not holding out any hope for long-term survival. Looking at the medical evidence (not as a medical professional myself) it looks as though she is being realistic with us considering the current situation. At each of his hospitalizations we had GI and Oncologist Docs included in the treatment teams. I understand when a physician provides a referral to hospice services within our system, it is their belief that the patient is ill with a terminal illness, and they estimate the patient will likely need care for no more than six months. Pete had a metal stent placed in February which did help some, and he has had numerous CT scans and lab tests to track his condition. With the PSC disease underlying, the liver ducts are so damaged that good drainage is not possible in his case because the biliary tract is fairly obliterated by fibrosis and scarring.

I am making sure that Pete has antibiotics, pain medication and the best nutrition that I can get into him. We will be seeing the Oncologist again in a few weeks.

We have been busy going down a long road since my last post. Pete was hospitalized twice with sepsis. Both times after 4 days of IV antibiotics his fever went down and he was discharged. At our follow-up appointment with his Oncologist, she advised us that Pete is too frail to continue chemo. In my heart I already knew that. Pete was relieved not to be going back for treatments. Now every time we see a Dr. they attempt to set us up with hospice care. Pete says he’s not ready for that yet. Hospice says that taking antibiotics is contrary to the goals of hospice. I don’t see why. I haven’t fully figured out the role of hospice.

Pete has 2 major illnesses. PSC (a pretty advanced case) and CCA. When I read the symptoms of advanced liver disease, that sounds just like Pete with PSC. Is advanced CCA the same? At any rate, he is on oral antibiotics for infection – the same ones that he took for infections before the CCA. It’s holding off the sepsis, but he still gets low grade fevers (up to 100.5). I wonder if the low fevers are caused by the CCA. His skin is yellow and labs are bad, his abdomen and legs are very swollen, he has very little appetite and some days he sleeps most of the time. He is understandably impatient and depressed. It’s frustrating that I can do little for him. We are both just continuing day by day. I used to wake up with the promise that every day had the possibility to be a good day. Now I wake up and just hope we can get through that day, but he expresses frustration at where he is. Perhaps it’s a blessing that we can’t see all that lies ahead.

I appreciate all of this input. It’s worrisome at this point because we started down the chemo pathway with a degree of optimism.

The more I read and hear, the more I realize as Melinda has said, this experience is unique to each individual. I see that what is helpful and tolerated for one person, may not be helpful at all and even may be harmful to another. At this time I have no idea if this break will provide him some rebound or not. His Onc did say that if he chooses to continue this chemo, he will feel sick the rest of his life. That info went right over his head. I know he’s just not ready to hear that just yet, but he will understand in his own time. Everything in me hopes that there might still be a way to get him some regained health, but I will respect his decisions if continuing treatment is too much for him.

Meantime, I’m doing everything I can to help build him back up. I’m glad that he has gotten past the part of chemo that made him 24 x 7 exhausted and continuously napping, and am seeing a little more up and around for short times with energy. I’ll take that for now and hope for better later.