kvolland
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Got the final word today. We start next week on the 5th. This doc said not an issue with the radiation. She says there will be no overlap with the previous radiation field. They will get the top part of the left kidney which appears to have gotten some radiation the last round but as she said, he’s got two. Going to place a PICC line and then off we go.
My daughter’s a little worried that he will be too sick to give her away at the wedding but he promised some hell or high water he would do it and I think he will.KrisV
Patti –
I should have jumped in here sooner. Take a piece of saran wrap and tape it down to you skin on the edges. Then pat it try afterwards to make sure no dampness is left afterwards. Also you can buy pre-tapped clear covers….they are called Aqua something. I can’t remember. If your port is accessed you sill have to cover it when showering (when the needle is place). If there is nothing about the surface and you are not accessed then you can ignore it. One the wonderful benefits of the Mediport.KrisV
Ah Lainy, so full of good humor even when facing a major “brain” surgery no less…..at least they know you have one. That would be my husband’s take on it. I had a head CT years ago and i kept them for years to prove I had one. We are here for you and if you need anything let me know.
KrisV
Hello Julie –
Welcome to the best family no one really wants to be a part of. We are great resource and a great place to vent, talk or just research information. Sounds like you have a great team working with you.
I don’t know anything about the HAI pump. We thankfully haven’t had to go that route. However my husband had his resection in June 2013 followed by 6 months of Gem/Ox as adjuvant chemo post-surgery. He tolerated it fairly well as I hope your mother is. The only problem he had was the cold intolerance and a couple of reactions to the Ox towards the end. We are now working toward IMRT sometime in the near future.
Hope everything goes well for both of you and don’t forget we are a great resource.Good Luck,
KrisVDearest Michele –
So sorry that you are having to go through all this. It makes my heart break for you and like Lainy I wish I could be there to help you through it.
I understand about the family end of things. My husband’s family is not very helpful and have in fact called me overbearing and controlling…..they are right I am. But nothing is going to change that when I am trying to do what’s best for him.
As for his family imposing on you….screen calls, only answer if you feel like it. Also also your hospice nurse and social worker to help set boundaries….that is what they are there for. The social worker or nurse can help keep those boundaries firm by backing up what you say. And it helps to have them be the bad guy.
As for your children, maybe it is time for them to stay home. I am sure working with the school, they could continue to get their school work done but also get to spend some time with their dad. Children are thankfully pretty resilient but this is still hard. Talk to hospice some about Children’s bereavement. Bereavement services are part of hospice requirements and most have some sort of program specifically for kids and if not they can make a referral.Hugs,
KrisVLinda –
We have experienced similar with the drain but not the biliary drain. Mark has his surgical drain pulled at DC because they thought it was done draining. Instead it was plugged and when they pulled it out, all his surgical drainage and ascites drained out through that hole then eventually started draining through a small surgical site. It was ugly for awhile. I too used a ostomy bag, we used a urostomy bag which is designed to urine rather than bowel so the drain is better and easier to deal with you. We utilize a Home supply place called Byram Healthcare. They are very easy to work with and will contact doctors for orders and bill your insurance….if you aren’t already hooked up with the a supplier.His low blood pressure may be related to a variety of things. I would make sure that he is drinking plenty of fluids, ascites and draining ascites can cause some dehydration. Sometimes Gatorade or other sports drink can help too. He may be losing sodium and potassium which can aggravate the low blood pressure. The sports drink will help.
There are lots of things to assist with the confusion, agitation and the elevated ammonia levels. If you are not using lactulose then I would ask for that. It will help pull the ammonia out in the bowels. Also you may ask doctors for some sort of anti-psychotic medications – something like risperidal, Haldol or Seroquel. They sound scare but they really well help.
Hope this helps.
KrisV
Sounds like things are going good. Stable disease sounds pretty good to me. I also think that getting a very thorough second opinion is a wonderful idea. You can never have too many opinions.
My husband had very few symptoms until he jaundiced so bad then he had the fatigue and weight loss to go with it. His was a Klatskin’s tumor but I understand that the symptoms can me more vague for intrahepatic if there are any at all.
Don’t worry about overstaying you welcome here. That is what we are here for.
KrisV
Don’t even worry about keeping us updated. We all understand how crazy this is.
As for the Oxaliplatin for my husband it was usually really bad the first couple of days and then would get better over the two weeks off. He did Gem/Ox every two weeks for 6 months. He really just made sure that everything was at least room temp while he was struggling. He wore a hat all the time and had a scarf for his face, gloves and usually warm socks. He had trouble even getting in the fridge at times. Now however he is not really having any problems.
With the neuropthy, it’s just a matter of keeping an eye out for any changes in the feet or hands. Usually starts as numbness then progresses to tingling or pins and needles. It can be more permanent so it is vital to alert the MD if symptoms started.
KrisV
That is awesome! Love to hear success stories with this disease. And think of how we are changing the numbers. As more and more CC patients live longer those that are diagnosed in the future won’t see such grim numbers and maybe, just maybe, no one will have to be told they only have 3 months to live.
Here’s hoping to continued successes.
KrisV
I like the thought that it would be used in conjunction with chemo and that they two may work together to make cancer fighting better. I think by itself it may not be as effective. There are plenty of drugs that are used together to potentiate the effects of one. Lots of doctors prescribe hydroxizine with pain medications to help with the nausea but it also makes that pain meds work better. And the reason why Aspirin, Advil and Aleve are not given with Coumadin, makes the Coumadin work better. There are lots of other ones too. I would love to see more research on it, especially since Vitamin C does not have any harmful potential or side effects.
More research but that will be difficult when you factor in the financial piece.
KrisV
Unfortunately that can be the case with some insurance plans, especially privately paid insurance plans. It would be nice if all insurance plans were equal for this and realize that when you are discussing hospice, the last thing you want to deal with is money and it most cases can deal with.
Look at your hospice closely, if they are not for profit (the Home Health and Hospice I work for is) then they will often write off the financial piece of it. Also look and see if you have a second hospice available in your area. Quite often areas have one that is larger and more well known while there is a second smaller agency. The second agency may be non-profit or be willing to work with you on the finances.
Lastly appeal to your insurance company. They have the ultimate decision and I know that some will drop the co-pays and deductibles, especially in a situation like this.
I have a firm belief that NO ONE should have to pay anything for hospice care. You are already dealing with the most stressful time in your life and there is no need to have to worry about finances.
We had a similar story at work just recently only this young woman’s plan only allowed her to have 15 days of hospice care in her lifetime. She was very ill but we knew she would be here longer than 15 days. We took her on and will write off anything her insurance does not pay.
Hope you can work things out.
KrisV
Judith –
So sorry that you had to join our little family. It sounds like you have both thought this through well and come to a decision that you are comfortable with. I wish you the best through this journey.
I am very glad that you have hospice involved and remember that they are there to support you in anyway that you can. If you have problems or questions do not hesitate to call or ask. If your hospice is anything like ours in the States then they should be available 24/7 to assist.
Treasure every moment, take lots of pictures and don’t forget to laugh. This can be so depressing and can drag you down. As they say Live, Laugh and Love trying not to dwell on the disease.KrisV
Catherine –
I know reducing the stress can be hard and it’s frustrating when someone tells you that you “Just need to reduce your stress.”Back in September the stress got to me and I landed in the hospital for chest pain. After a full cardiac workup the cardiologist told me that me I needed to reduced the stress in my life. I laughed at him. At the time both my husband and my son were dealing with cancer and as we spoke my husband had been admitted for his fourth hospitalization since June. How in heavens name was I supposed to reduce my stress?
But the hair will grow back. If she doesn’t like the wigs then some pretty scarves or some silly hats. And also remember bald is beautiful and there is no shame in it, especially as most people understand why now.
KrisV
Dearest LindaR –
So sorry that things have gotten to this point for you and your husband. It sounds like both of you have fought a valiant battle.I am glad you are getting home health involved as they will be able to provide valuable assistance to both of you. Be sure to rely on them for as much as you can. I am sorry that you hospice experience was so bad in the past because I would encourage you to head that direction sooner than later.
I am also glad that you will have caregivers in the home to assist you. It is important at this time for you to spend some time as his wife rather than just his caregiver. Being a caregiver is so tough when you don’t have that ability to take a break. I encourage you to take time for yourself even if it’s getting in the car and taking a short drive.
KrisV
