kvolland
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Suzy –
Sounds like you have your hands full. It’s good that you are being persistent though – you never know what you will find.
Intake can be hard. We struggled with it with my husband. The first and foremost thing is make sure that every piece of food that passes her lips has some nutritional value and that may mean adding to foods she is already eating. Dry powdered milk can be stirred into about anything and it will dissolve adding calories and protein without changing the taste the way protein powders can. My husband wanted jello which has some protein but I made it substituting the cold water with Ensure Clear (also have used other clear protein drinks such as IsoSource) and let it set up. It sets up the same but a little cloudy and tastes pretty much the same with double the calories and protein. I would think you could mix it with fruit juice and freeze it for homemade popsicles too. Then we made protein shakes with frozen fruit, ice cream, vanilla yogurt and milk then we were really struggling I added protein powder or powdered milk then blend it all up. Goes down good and even just a couple sips has a lot of calories. Get creative and like Lainy said Carnation Instant Breakfast is great too.Good Luck,
KrisVWell, I am glad I read that before I tried do it. Since Mark has a port and I don’t want to go all the way to Seattle to draw it, I will be drawing it myself. I stopped at opening the first box so I will open it all the way and figure it out before I draw the blood. I did figure it was more than one vial though. Mark is part of another study….Long-Term Follow up for Childhood Cancer for his lymphoma and we do a HUGE questionnaire every 5 years and draw blood. It’s about 3 or vials every time and also an inside the cheek swab for DNA.
I just need to get off my behind and do it.
KrisV
Wonderful news Lainy. Hopefully things will go get and no more “surprises” to come. That is so good to hear.
KrisV
Thank you Marion. And I still say I could not have done it without you all cheerleading me on when I needed it. Thanks again.
KrisV
Love it Marion. We get so overwhelmed trying to do it all that we end up getting sick ourselves (hence my four days in the hospital last September). Caregivers need to remember to take care of themselves. I advocate that for my patients’ caregivers all the time. And now I have to push to get Mark to do things. He is feeling better but he is so used to me waiting on him. My mantra now is “You can do it yourself.”
KrisV
Trish –
Tracking down something like this (where it is cc or not) can be difficult at best. I know I was positive that my husband needed to have his gallbladder out. Right upper quadrant pain, nausea at times and feeling of fullness. We date those symptoms back to 5-6 years before his diagnosis. The middle of April last year he had several really bad attacks so his PCP ordered a US and Hida scan both of which were negative. In the mean time he had a bout of what I am sure was kidney stones so we went in and found the tumor. Then it went crazy from there.
I would suggest a second opinion and I would really seek one from someone who has experience with hepatobiliary problems (specialized in liver and bile ducts). I was told that US and HIDA scan are not as helpful for cc. CT scan or an MRCP (specialized MRI) would probably be better. Push, push, push until someone says without a doubt what it is.KrisV
Dear Gramos and Hero –
Welcome to our little family. So sorry you had to join us and you are so right this cancer is horrible and upsets your life so badly. It has been referred to as a roller coaster and that’s probably the best description…..and it’s one you don’t want to be on.
I would suggest that you get a second opinion if you haven’t already. Since this is such a rare cancer you have to have a doc who has treated many cases of it. The other thing with second opinions is that one doc may be willing to do something that another is not. They all have different ideas.
I wish you strength as this goes on for both of you. And remember we are always here.KrisV
And I always say the squeaky wheel gets greased. If you get denied, appeal and appeal again. Also you can try contacting your states Insurance Commissioner.
Just as a little note about referrals, especially out-of-network….I know one insurance company (that shall remain un-named) has a pool of money that they use for their out-of-network referrals. This is a set sum of money every year that they use. The key is that the insurance case managers (those whom make the decisions about out of network referrals) get to split any money that is left over at the end of the year. This is their bonus for limiting out of network referrals….Hmm, I think there might be a little conflict of interest there with that.
KrisV
So sorry that you had to go through this with your mother. I am sorry for your loss. I am glad that you were able to have hospice involved since they are such good support. Also remember that they will continue to be there for you and your family with bereavement services. If you need to, be sure to take advantage of it if you need.
Hugs, KrisV
Rob –
Welcome to the family. I have to say your story sounds an awful like my husband’s. He had no symptoms and his was found incidently in the ER on a CT scan while they were looking for kidney stones also. We think he actually passed the stone while in the waiting room but they did the CT anyway. Three weeks later he had a 3 cm perihilar tumor removed with one positive lymph node.
Chemo or not to chemo, that is a choice. It can be a difficult one too. If you use the search button on the header, you will surely find several discussions about this. You will be able to follow others on their decision. My husband chose to do chemo and chemoradiation to give him what he felt was the chance to have it not come back.
I would also encourage you to get a second opinion just to make sure that all you bases are covered.KrisV
Emad –
Try not to beat yourself up over it. I know it’s hard but with this disease there is little you can do to change it’s course. Maybe if the doctor had recognized your concerns and had treated it they might have bought her more time. But I have a firm belief that when it is our time, it is our time and there is very little we can do to change that. I promise there will come a time when you will go for an hour, then a couple hours then a day without feeling that intense grief. You will be able to pull those good memories out and cherish them.
I still second guess my decision about my dad. He had a heart attack and I rushed to the ER. When I go there I had to make the decision on if I wanted them to keep trying or to stop. He had been down for 45 minutes at that point. I know it my brain I did the right thing but my heart often questions that.
I would suggest that maybe you see a grief counselor just to help you through this time. I did after my father passed. I was very angry for awhile that my dad was gone and I was stuck with my mom (there’s a long story there) who is half crazy. It was so unfair.
Hang in there and keep putting one foot in front of the other.Hugs, KrisV
Emad –
Welcome to the family. Sorry you had to join us and so sorry for the loss of your mother. I understand how you feel. I lost my father very suddenly several years ago and while I know there was nothing I could do to prevent it, I still grieve that loss. I won’t tell you it goes away but it does ease and become less acute. Keep thinking those good memories about her and remember the good times.
Also remember you don’t have to always be positive and this is a great place to let go when you need to. We all can be moody or angry at times. This disease would do it to the best of people.KrisV
Melinda –
Glad things are going well. Resection is the best which I am sure you already know plus no nodes and clean margins, well ahead of the game. Gem/Cis is some sort of regime seems to be the standard although my husband did Gem/Oxaliplatin instead. But there is no set treatment protocol for it. Unlike breast cancer or colon cancer or other more common cancers there is not guidelines to follow for treatment so everyone tries what seems to work best. We did 6 months of every other week.
Everyone handles the chemo a little differently so there is no real answer. We made sure that my husband took his nausea meds on a set schedule for 2 days after each chemo. He took ondansetron (Zofran) twice daily then had one extra he could take. He took his prochlorperazine every 6 hours and his dexamethasone twice daily. He really had little problem with nausea. When the nausea got really bad, he took a lorazepam which seemed to really help too. Honestly though it seemed that every dose was a little different, some made him really tired then two weeks later he might not be tired but be nauseated then the next time nothing. The fatigue was really the one that seemed additive. He slept a lot at the end of 6 months.
I would say keep pushing the food as much as possible and fluids too. And really I let Mark sleep whenever as long as he was sleeping at night.
Hang in there and there is an end in sight.KrisV
WooHoo! Great news!. Shrinkage it one of the best things to hear. Congratulations to both of you. Here’s hoping that things continue to go in the right direction.
KrisV
Suzy –
Glad that she had a good day today. And you are not the first person that feels that way and has had to make a decision like this. I have been down this road with some of my families. I will still say that hospice is not giving up but changing the fight. And she can always be discharged from hospice when she starts doing better. I have seen that happen may times before.
She will be much happier at home either way. Good luck and keep us posted.Hugs,
KrisV
