kvolland
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kvolland
SpectatorPorter –
Just wanted to let you know that I am thinking about you. Hope that surgery goes well on Monday and in a few days you will be able to update us on how it went. I will keep you in my thoughts and prayers on Monday.KrisV
kvolland
SpectatorHorses –
I am glad things went well for you with the hospice evaluation. You will find them to be a great support and a great resource.
It may be that your husband had some ascites in his abdomen which is buildup of fluid when the liver is not working well. If it causes shortness of breath and discomfort, they can drain it. This should be covered by hospice when it’s done since it is a comfort measure for him. You may ask about that. The hospice group I work with do it quite often in situations like this. Also as Marion said, talk to your doc about ways to prevent the fluid buildup.KrisV
kvolland
SpectatorGood story Gavin.
I agree 100% that treatment should not be based on age but on overall health.
KrisV
kvolland
SpectatorKathy –
Welcome to the family….not that you really want to belong and we understand that completely. As Percy has pointed out this can be treated more like a disease and there are several here who have lived a long time with it. I always take doctor’s prognosis that we have so and so many months or years to survive, we are not born with an expiration date.
What I did when my husband was diagnosed was read everything I possibly could. I quickly hooked up here and started doing searches on anything you want to know…..I had to look up things like night sweats, percutaneous drains and all kinds of treatment.
I am a nurse so I understand about the patience and the just brushing things off. My theory was if there was no blood or bone sticking out then get up and move on. I was sure I would not be able to do it. Most of the time I do fine but there are days when I just melt down. Those are the days you just put one foot in front of the other and keep moving forward. You need to make sure that you still take time to take care of yourself….get away for a few hours and do something that is totally for you.
Hang in there and keep us posted on how things are going. And remember we are always here if you need to vent.
KrisV
January 24, 2014 at 3:26 am in reply to: Sister (40) was diagnosed just after Thanksgiving and I’m struggling. #78963kvolland
SpectatorHello Mel –
As you know, welcome to the family no one really wants to be a part of. You won’t find a better group of people to support you through this. Don’t ever worry about the length of your posts. Some of us can be wordy (that would be me) but we can always come up with some way to help.I feel your pain right now. My youngest son was diagnosed with thyroid cancer the same day my husband got his CC diagnosis. It was a rather overwhelming summer to say the least. We got through it….you will too.
One thing I do know is that people want to help they just don’t know how. And think, every little chore they do is one less you or your family has to. I always suggest that you make a list of who has volunteered to help (all those people who say if you need anything let me know) and assign them a task. I had a couple people at work that cooked meals for us, one gal organized a fundraiser garage sale. My sister is a pretty good cook so she made some freezer meals but also stopped and got things like frozen lasagna.
I also was told of this website: http://www.lotsahelpinghands.com/ which allows you to set a web site where people can volunteer to help out with specific tasks you need done and post on it.
Hope this helps. Keep us posted on how things go.
KrisV
kvolland
SpectatorOnce we know the date I am sure I could attend. I will wait to see for the date.
KrisV
kvolland
SpectatorMichele –
So sorry that things are going the way they are for you. I have people ask me how I can be so strong going through what I have and I tell them because I don’t have a choice. I had to put one foot in front of the other and do what needed to be strong. They say God doesn’t give you more than you can handle but sometimes I think He overestimates how much we can take. The thing is though…..you DON’T always have to stay strong. You CAN break down and cry and rail at how unfair all of this it. I would bet that we all have at one point. I was having some pretty good (bad really) panic attacks when I went to my doc. He gave me an anti-depressant to take the edge off which has helped. I also have a counselor that I go to weekly. It helps to vent to someone. I also try to get a massage once a month.As for your husband and his pain….there are other options out there. The first thing to do is make sure that you are keeping track of exactly how much pain med you are giving him. Hospice can use this as a guide to start a longer acting med. Morphine can be given a long-acting form called MS Contin and normally it is an oral medication but….it can be given rectally (not the favorite route but it works). The other thing with these is that if taken orally they do not breakdown in the stomach but slowly through the whole digestive tract so lead to less nausea. Also if you husband has a port ask to have it accessed and to be given IV pain medications. If he does not have a port then ask to have a PICC line placed for IV pain meds. They can not only give IV pain meds but IV anti-nausea meds.
Hope things work out for you.
KrisV
kvolland
SpectatorHi Denise –
Looks like LisaS did a great job explaining about the drains. My husband had his put in four days before his surgery to relieve some of the pressure from the bile build-up and get his liver working better. Then it was in for a month after surgery.I would ask you doctor how much bile they expect it to drain and what to do if it drains more. We were told at most about a liter a day but Mark’s drained about 6-7 liters a day. He ended up in the hospital 2 days after it was placed for dehydration and a super low sodium. The doctor said it was a rare reaction to having the drain placed that caused the liver to overproduce and get rid of too much bile (of course it would happen to us). I had asked how much would drain but not what to do if it drained too much so ended up calling on-call doc really early in the morning.
Now we were told that he could shower normally with it in just no soaking in the tub. And to wash the area carefully with warm soapy water and rinse well. He did have to flush it daily (I did it) and we kept a record of how much drained every day so the doc could keep track of how much it drained. When his got to draining very little they pulled his. Definitely ask for the prefilled syringes. You should be able to get a prescription and get that filled at a pharmacy.
Like LisaS he only hurt for a day or two afterwards but that was hard to judge since he ended up in the hospital so soon afterwards and then had surgery.
Good Luck and keep us posted.
KrisV
kvolland
SpectatorCaroline –
Sounds like you are doing exactly what she needs right now. My rule of thumb with the pain meds is that as long as you aren’t waking her up to give her pain medications that you are not giving her too much. If you have to wake her up to give her pain meds then she probably does not need them….most people will not sleep if their pain is too bad.The other thing I suggest is using the pain scale, 0 is no pain and 10 is the worst. Have her pick a number that she does not like her pain to get higher than and take the oxycodone when her pain gets close to that number. Keep a written record of when she takes pain meds (both types), what and how much she took, her pain level before taking and her pain after about a hour. A pain diary like that will help the doctor with pain management.
Remember that the Oxycontin is a long acting pain medication and is designed to be take 2 times daily regardless of her pain level then she can take the oxycodone as needed in between (or at the same time if needed). Your doc will probably increase the Oxycontin slowly to help with the pain control. The goal is to get the bulk of her pain control with the longer-acting stuff and use the shorter acting once in a while. It can take 3-4 doses of the Oxycontin before it really kicks in and gets high enough in the blood.
Don’t worry about the fact that they may have to increase the dosage or the timing as things go on. Our bodies get used to the pain meds so they lose effectiveness.
Also remember that constipation can become as issues as she takes more pain meds. Plenty of fluids and moving around as she can. If it becomes a big issue let us know…there are lots of suggestion to help with that.
Good luck and remember that those news reports you see are sensationalized and the oxycodone/oxycontin are safe medications when taken as directed.
KrisV
kvolland
SpectatorWill be looking forward to seeing what Dr Rocha has to say. He was Mark’s surgeon for his resection. He is a great surgeon and a wonderful man too. SO glad we were able to have him.
Can’t wait to be able to go to some of these conferences when life settles down.KrisV
kvolland
SpectatorNancy –
Welcome to the family….no one ever wants to be a part of. I am sorry that so much had been heaped on you lately. Sounds like you both have been through the wringer already.I am a Home Health nurse and work closely with our hospice team. The “Right” time for hospice is whenever you and your husband feel ready for it. The technical definition for hospice is when someone had six months or less to live under the “normal” course of the disease. That does not mean it has to be 6 months, lots of people can go longer.
Hospice changes the goals of your care. Instead of quantity of life it becomes quality of life. Their goal is to keep him comfortable and at home with all of the support that you might need. Includes nursing care, someone to help with bathing, chaplain for spirituality, social worker to address any needs or complications and some sort of complimentary therapy….ours offers aroma therapy, massage and music therapy. There are volunteers to come sit with him so you can get away.
They really are there to treat the symptoms no matter what they are rather than the disease. If he has pain they treat the pain and not worry a lot about the cause. Nausea, Shortness of breath, any of that….they treat that. The nurses are on call 24/7 so there is ALWAYS someone to talk to. If he gets too difficult to care for at home, they can help with finding the right place for him.
I applaud yours and his decision to at least talk about it at this point. And don’t ever worry about how long your posts are….some of get wordy (me at times) and we are always here to help anyway we can. I hope I answered your questions without being too blunt.
KrisV
kvolland
SpectatorLadyLinden –
Sorry to hear how things are going. We have been there with the blood infections….Mark had three of them after his surgery. I swear we lived in the hospital this summer.I am with Lainy about the Hospice. There is so much that they can offer and it is so much better to start when you are feeling better then when it becomes a crisis. It becomes about quality of life…which can kind of be a relief when you are battling so hard against anything. If nothing else listen to what they have to say then make a decision when you are ready.
There is a lot of support they can offer. Nursing services to help you not have to go in the hospital or the doctor. Spiritual services which is non-denominational. Social worker to help with any needs that you might have. Bath aide to help when you can’t do it on your own. Medicare (Home health and Hospice’s governing agency) requires them to offer complementary therapy….ours offers massage, aroma therapy and music for relaxation plus volunteer hours that can come and sit with you so family can get away. Another agency I know of offers Reiki therapy. There is also a respite benefit that gives you/your family a longer break if needed. My hospice also offers inpatient hospital admits for symptom control such as if they pain gets out of control or nausea. They will work with you doctor but they have their own doctor that can assist with care if needed….you always have someone who is in your court.
If you don’t feel that you are ready for Hospice you may look into a home health referral which can assist with keeping you out of the hospital by coming and seeing you at home and monitoring you closely.
Hope this helps and realize that any decision you make is the best one for you.
KrisV
January 18, 2014 at 4:50 am in reply to: Notes from ASCO GI – Practice Guidelines for intrahepatic CCA #78882kvolland
SpectatorThis is interesting. Mark’s was not ICC but perihilar and we talked PET scans with our ONC…didn’t even think about if before surgery….his response was that it was not as accurate as a CT scan in Mark’s case and that he did not use it for CC for a diagnostic tool. He went off about why but he kind of lost me at one point then I couldn’t catch up.
It’s interesting reading about the conference.
Thanks for posting.KrisV
kvolland
SpectatorDarla –
Back to tearing up the house so I guess he must be feeling much better. Ran me ragged all day so I am as tired as if I would have gone to chemo.
KrisV
kvolland
SpectatorPorter –
All sounds good to me. I would expect platelets to be low with chemo, hopefully they will pop up before surgery. You still have 10 days.
Mark had a Roux-en-Y procedure which is probably similar just opposite side of the liver….they took out the left lobe and the caudate lobe of the right along with the gall bladder, common bile duct and then pulled a piece of his small intestine up to make a new bile duct from the liver to the small intestine. They left him basically with 7 and 8. His was a longer surgery but that was due to adhesions and scarring from a previous surgery and he was 12 days in after the surgery but we had him in two days earlier for complications from his bile drain placement.
You have been in thoughts a lot as you get ready for this. I am so excited for you.
KrisV
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