Palliative care?

Home from the hospital. Drs think I had a virus and my system just couldn't handle it. Initially, they were very concerned about dehydration due to lab results. I presented better than I should've-always try to look my best:) They drew 8 cultures over the days, normally I get 3, because they were sure I had something systemic going on. For once-the starts aligned in my favor. My port has healed from the infiltration of TPN due to a needle issue(or home health issue…), so the picc was pulled. Yay for that since it will give me one less area to be worried about. Of course, the port is still accessed for TPN.

Both the hospitalist and internal medicine doc on my case have had me before, and commented that I wasn't my usual self. They know that I will try anything-beg, borrow, or steal, to get out as soon as possible. This time, I was just so…tired. It sounds stupid, we all get tired, but this is a bone deep, to the gut, tired. Even having my fav hottie male nurse switched to my room didn't help-but he was pretty to look at :) I think the problem is that now, we have to much info at our fingertips. I'm glad we don't rely on a Dr or nurse to tell us everything, and that they do no wrong, but knowing too much is also dangerous. I know everything I have is degenerative and that each day is probably the best I'll feel. I don't want anyone to feel sorry for me, these diseases have made me who I am. And of course I sometimes think, "why me?", but then someone comes up and tells me that what I'm doing or saying helps them get thru their day. Yes, there are positives, strange-I know, to being chronically ill, but this week, my limit was reached. Wow-that's gotta be a run-on sentence:)
My pain doc has an office where I was inpatient. He came by to visit, or as he calls it-to be Annie and tell me the sun will come out tomorrow. Sadly, the man cannot sing. He does have red hair… He just wanted to check-in and see what was up. I know I keep saying it, but I'm incredibly blessed with a great medical team-both at home and at Duke. After I beat him at a few hands of cards, he brought up palliative care, again.
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Here's the definition:
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
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I have an appointment with him tomorrow. I have quite a bit of inflammation down my sternum so it's time for a series of cortisone injections. My question for you intelligent folks is this: Do you have any experience with palliative care? If so, what made this type of care different from your normal day to day care? He mentioned patient comfort being first and foremost, but I feel my Drs fight pretty hard for comfort anyway. If a patient is classified as a palliative care patient, does this open up more options for meds? Just what's the difference?
Part of me is scared to even think about it. I've said before, I feel like these diseases are a monster, chasing me and breathing down my neck. If I slow down, mis-step, or make a bad decision, it will overtake me. I've been running since I was a small child, maybe it's time to take a break.

I know I said this on my other post, but thanks again for the supportive and kind words. I try to reply and offer advice or empathy, but lately I've been taking much more than giving. This is one of the only forums I know where there isn't a ton of bickering, or petty childish behavior. Pain is strong, but instead of knocking us down and attacking individually, we are able to stand(sometimes with a cane, walker, or chair) and become strong by supporting each other. Pretty cool :)

rocckyd I am familiar with that type of care when I worked as an RN on an Oncology unit. Hospice was considered palliative care. I think that it might be appropriate for you if and only if they will still do curative care for you also! or if you want curative care along with palliative care!

The only concern I have is that with most hospice type palliative care you are treated as terminal and you no longer receive curative care! And unless that is all you want then I would make darn sure that I had it in writing that they will also continue with their curative care! Your so young and with your son,.......... well ......,,it is a difficult decision........... but just make sure of what your getting into is what you want! And that you will receive all the treatments that you need and want!!

Good Luck to You rocckyd I do wish you Peace!

White Beard

At the hospital/hospice/cancer care place I use, hospice and palliative care are two separate things, so apparently there's some looseness in definitions, because personally I'd count hospice as palliative care too. But I was in their hospice care for a couple of days (technically I have six months to live if I'm averaged in with all lung cancer patients, so I'm eligible, though my subset of cancer has a longer average lifespan), and although hospice did wonderfully for pain control, there were some problems, which switching to their palliative care program eliminated:

--Anything beyond very cheap, basic pain control wasn't allowed in hospice, but was in palliative care. So my "chemo" drug that actually shortens average life by a couple of months but greatly increases quality of life wouldn't be allowed by our hospice, but is allowed by palliative. Same for my nerve block when it wears off. I don't think palliative radiation would be allowed by hospice either, though a couple weeks of zapping eliminated lots of pain, still leaving with a smaller tumor though.

--No diagnostic testing would be allowed in hospice. I actually went in with pain sorta lower than my cancer but kinda higher than my bowels, and the doctor did an Xray to make sure it wasn't an impacted bowel before hospice took over. Hospice said such an xray wouldn't be included in their care, just pain control. Also, no CT scans, MRIs or anything like that. (Don't know if there might be exceptions for stuff clearly unrelated to the main disease, like an xray for a broken ankle after a fall--didn't ask). Palliative care allows any sort of testing, minimal ordered by them, more extensive ordered by my oncologist.

--Once I went into hospice, all care for my main disease and complications had to be through them. No more oncology team. I guess the idea is that hospice would pay for everything, averaged out over all their patients, so my insurance would not pay for anything outside hospice. This meant that hospice's budget ruled my care, which is probably why more expensive things like nerve blocks or palliative radiation weren't allowed.

Palliative care at the same hospital was very different, and hospice and I both decided palliative care was what I needed. It was more like pain management: I could see my oncology team, continue to do more aggressive stuff for pain management like my targeted chemo drug and nerve block and palliative radiation, and my oncologist could continue to track my cancer with CT scans or whatever he felt necessary.

So I'm now in their palliative care program, and will switch to hospice when I'm personally closer to dying and the other pain management options aren't options for me anymore. I love it. It fits more with that "extra layer of support" definition rather than being instead of other medical care.

But it sounds like the bottom line is to ask in detail what palliative care includes, because it seems like there are lots of different types at different places, and apparently different hospices too, because one generic hospice booklet I picked up said nerve blocks were still included. Go figure.

I so agree with you, Jamesbw,
At my Cancer center palliative care is separate from hospice and is solely aim at quality of life,QOL. As you wrote, there are many curative options available in P--care, such as radiation and access tp new med oncological techniques. While my type of Cancer. mCRPC, is slow growing and hard to develop a firm prognosis on (for example I was given 1.5 to 3 years at DX, it's been almost 8 years now without added metateses)I have participated in the palliative program from time to time and it is definitely not a waiting room for death, far from it . . . Q

Saw my pain management doc today. I got a number of trigger point injections in my lower back, and 4 cortisone injections along my sternum. Where the ribs meet the sternum is very red, hot, and swollen. I call it my 3rd boob :) Keeping the Fentanyl, Ocyxodone, Valium, and Baclofen at the same doses for now. I would really like to lower the patch dose, but Dr wants to wait and see if this new treatment option down at Duke produces results. My disease markers were still high when I had my last clinic visit so he's probably right.

He was thinking of a plan kinda like JamesBW. Not giving up, but just making my life a bit easier. He said I would have more options available. He is sending an email down to Duke to see what they can come up with. Apparently they've been batting it around along with other treatment options.

I can usually maintain a pretty positive attitude, but I just keep getting knocked down-again, and again. Every pain visit we come up with the treatment goal. Right now I want to spend 8 weeks outpatient-8 in a row. I can't walk into a hospital without a ton of hi's and hellos. Drs and nurses find me in Walmart! You know it's bad when a nurse from the floor comes down to the ER to say hi because she saw my post in Facebook post.

So-good pain appointment. I have a set appointment in March, but he always wants to see me after a discharge. He'll also fit me in if I call, usually the same week. My real goal is not to have to see him before March. Since I've been with the practice for over a decade, he will write out scripts to be put on file. Dr just wishes he knew the magic answer to keep me out of the hospital, so do I.

Pain Dr said to call him next week if I want to talk about different types of care. He doesn't want a label to change my attitude-which is usually pretty good.

Spent the last few days helping little man with his science project. Wanted to get it finished before I head out of town so my parents won't have to worry about it. He had his first basketball game tonight which was fun. The kid lives and breathes soccer year-round, but like to play rec basketball when there is a break. He actually got selected to play on a select team but I said no. He is still playing indoor soccer and starts goalie training in a few weeks. I love to watch him play, but rec bball is much more relaxed. Plus-he gets to play with friends from school. Soccer is a travel team so the kids are from everywhere. It fun, and kinda sad, to watch him out there with his friends on the court and on the bench. He's 11 and really turning into his own person. He still looks right at me anytime he scores, but his friends approval is just as important. I've said before-I'm extremely lucky that he loves sports, and is very talented as well. I can't physically keep up with him, but I can cheer him on.

He's stressed tonight because of the Duke trip tomorrow. A couple of times I've gone down for an appointment and end up having to stay inpatient. Home health will come by in the morning to change the port dressing/needle and labs. I plan on chilling at home for a bit and then I'll head on down Durham. Hoping it will be a quick and easy trip.

HUGS! I'm glad to hear about Nathan's enjoying his sports, and yeah, that's definitely the age where the peer group starts to become more important than the home. Mine is 8 and he's already headed that way!

Hope your trip to Duke is SHORT.

<3