janbee
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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.
Gavin and Lainy, thank you so much for your perspectives. It’s very helpful to me to consider all of what you are saying. Sometimes I feel overwhelmed, so having discussion helps me think through.
@ Gavin: The problem with the stent as explained to me at time of insertion is that the ducts (including the small branched ducts that drain into the larger ducts) are heavily scarred and closed off making good drainage impossible. During the stenting procedure, they worked on him for over an hour to get the best placement possible. I was advised at that time that they had achieved limited success which was the minimal allowable to start chemo. The doctor who did the work specializes in liver surgery and is highly experienced and regarded. He spent some time with us following the surgery drawing pictures and explaining the complications caused by the PSC in detail. I believe he did his best in a difficult situation. I am careful not to give Pete any high fat nutrition that would cause problems.
Pete is a quiet and very private person. I told him I would respect his wishes and not push for immediate hospice care, but if his health reaches a point where I am unable to effectively provide him with very good care then I will override his objections and call them in. Although Pete has the hard part of this journey, I am with him on it, and I will need some consideration from him as well.
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.
They didn’t run tumor markers, only the blood counts. They are pretty bad. After receiving 2 units of blood, they hardly budged. He has very low white and red counts, and problems with platelets. Hematicrit also remains very low. There were low markers after almost every count except his bilirubin, which was high but not nearly so much as I’ve seen in the past. I believe his bone marrow has taken a pretty powerful hit. Also the CT scan didn’t show that we’ve made remarkable progress considering the health investment we’ve made with the chemo. We have another appointment with Onc on Aug 27 to see where we go from here.
After further reading, I realized that I probably should have posted this question in the chemo discussion area, but looking there I believe I may have found an explanation for what my husband is experiencing.
After being on break from his chemo treatments for a month, he still has the swollen legs/feet and is running the fevers and has the fussy problems with food tastes and appetite that he experienced while actively regularly receiving treatments. An overly simplistic comparison might be if I (call me chemo) walked into a room (call it my husbands body) I could turn on the lights (effects and side effects). Then if I walked out of the room, the lights would remain on. So essentially the effects and side effects remain active for a substantial period of time once treatments have discontinued. It doesn’t change his situation, but at least we have a basic understanding of what’s going on with him. I’m not sure why it is helpful to know that, but it is.
I gleaned this from reading descriptions of experiences from people several years back. To those of you who shared those experiences, where ever you are, we thank you.
Thank you all for the suggestions for food. It’s a little bit of a challenge because one day he likes something and the next day he can’t stand it. Although my goal is to provide him with good nutritious (say “healthy”) foods, at this point I am giving him whatever he will eat for the sake of calories to help prevent further weight loss. I have a good blender, and when he will take it I make him a smoothie with frozen berries and bananas in it. Last two days he doesn’t want those so we’re on to something else. Surprisingly he has been asking for oatmeal. I have no complaints there, but that’s something he never cared for before. Go figure. I haven’t been able to interest him in Ensure, but I am going to try the Instant Breakfast idea.
Thank you for all your best wishes. I am so hoping for an improvement on the tumor. Today he has a low fever (100) is just terribly weak and seems almost anesthetized to the point I can hardly keep him awake enough to have a conversation. Also no appetite so it’s been extremely difficult to get any fluids or food into him. I hate these days when he is obviously experiencing the effects of the chemo.
Thanks for your input on the problem with fever. At first I was thinking that he had an infection, but I can’t account for the fact that his fever is intermittent. He may run it all afternoon, but the next day it’s normal. Today no fever, and I can see his bright self shining through. Hoping it lasts like this for most of the day. However, I discuss this with his doc.
