kvolland
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I kept hoping he would just get better that’s kind of why I never really said anything. I figured he would bounce back like he did when they held all of it for the week before the wedding (part of the reason he looked alright at the wedding) however, he hasn’t.
I know I just keep putting one foot in front of the other everyday. Someone asked my how I do it….how I keep dealing with it all. I told them I didn’t have a choice. If I didn’t do it no one else would and that you just put one foot in front of the other. At one point during all of this my goal for the day was just getting out of bed. I do it because I have no choice, you are right.
I am just bummed that it’s ending this way. It broke my heart this morning to find him curled up on the bed after his shower looking about half dead then he told me he wished he hadn’t done this last part. He’s been so strong through all of this. He’s still been my rock even though he is the one who’s sick and to see him like that….it was awful. And them I am frustrated because I can’t fix it. I have tried all my little nursing tricks and nothing seems to be working. He knows my frustration so he tries not to say anything but I still see it. UGH!
Thanks for the vent.
KrisV
Thank you, Lisa and Darla.
We go up tomorrow for labs and fluids. Also going to discuss alternate methods for feeding such as through his port. He doesn’t want that so he is trying a little harder. I wish I could get him to walk even a 1/2 mile…right now I can’t get him out of his chair.
We will get to do something soon, I know.
I am so glad though Lisa that you are doing so well and feeling pretty good. That’s such a great thing.KrisV
Welcome Aboard Owen –
You have come to the best place to learn as much as you can about this disease. We have all been in your place at one time or another. We will answer any questions you have to the best of our ability. One way that can help you look up specific topics is to use the Search function under the heading. It gives you a lot of posts usually but gives you some good reading. Good luck and ask away.KrisV
Lisa –
Sounds so good. Glad to here you got away for awhile. And don’t feel bad about forgetting stuff. We went off one day and forgot all of Mark’s meds but thankfully the infusion center was able to give him some to keep him comfortable.
So glad you are doing well post radiation. Mark is struggling so much and not feeling very well. I was thinking of trying a long weekend for my birthday (first weekend in May) but I am glad I didn’t. He’s certainly not ready for that yet.KrisV
Julie –
You sound like me. I hate the unknown. I want everything laid out and know exactly what is going on. The first chemo is always scary. I do know that everyone responds differently to the chemo. Mark did Gem and Oxaliplatin and did great through it where the 5FU we just finished wiped him out. He would say that he was mostly tired especially towards the end. The immune system part we didn’t have a lot of problems with. His white count stayed up and we had our toddler grandson living with us and bringing all kinds of yuck home from daycare and Mark only got sick once.
One thing you shouldn’t have with the Gem/Cis is the cold sensitivity that comes with the Ox. That was annoying for both of us.
Generally with my patients and with Mark too, they feel pretty good the day of chemo because of the fluids and the premeds. Some will feel a varying range from kind of mild flu-like symptoms to feeling really bad…..it just depends. One thing I will say though is if they give you a schedule to take medications after chemo follow it. Mark took Zofran twice daily and Dexamethsone twice daily after chemo for two days then prochlorperazine as needed every 6 hours and Lorazepam as needed. We really followed the directions and had little problems.
As far as traveling, we have a 4 hour round trip every time we go for chemo or radiation (I put 15,000 miles on my car this last year driving for just the cancer). Mark traveled well. We have a “bucket” of essentials that we carried such as extra meds (nausea, pain), baby wipes to clean up, towels, gatorade, water, etc but never really used much of it.
I think the traveling versus staying home decision is tough. I guess it depends on where you feel most comfortable. We considered a hotel while doing his 25 treatments of daily radiation but opted for the drive so he could be home which is what he wanted.Good luck with your decision. I know you will make the right one for you.
KrisV
Julie –
Good luck with the port on Friday. It’s a pretty simple procedure really so as long as they get that IV then live will be good…..and just think no more poking for an IV line. One thing, if your port site is tender when you start chemo (which it may be since it’s new) ask them to numb it up before they access it. They can inject a little bit of lidocaine under the skin before they access.
For the wound make sure you eat lots of protein, you will really need that for wound healing. Protein can sometimes be the hard one eat so try to keep at it. Also for tape, ask for a cloth tape such as Medipore or something like that. It’s usually easier on the skin and doesn’t cause as much irritation. You can also ask for a “skin prep” which is similar to an alcohol wipe but it is a protective layer than you wipe, let dry then apply tape over. Tape sticks better and releases better.Good luck again.
KrisV
Crissie –
I agree with Lainy, it sounds like you are doing what your dad wants right now. Remember that grief comes even before some one dies so it is okay to feel whatever you are feeling be it anger, depression or anything else. It is very hard to do what you are doing. Please make sure that you have some support too. You may look and see if there is someone to talk to….a pastor or as he gets on hospice, the hospice chaplain. They can certainly help you with what you are feeling and going through.Best wishes and Hugs,
KrisVWay to go Matt. Good thing to here. It’s amazing the things we celebrate now….who would have ever thought taking a bath would be so exciting. Mark was so happy when his port was not longer accessed and he could shower without it being a hassled covering it. Congrats on the clean scan and labs.
KrisV
For Mark the post-op was a little longer than most partially because it took him three days to just be able to reposition himself in bed. His shoulders are full of arthritis and his surgery aggravated them. Once he got moving though things went well. According to him the pain wasn’t too bad. He quit using the pain button on day 4 and they switched him to oral. I think by 4 weeks post-op he was only using pain pills at night just as he was before surgery. There does not seem to be any permanent nerve damage although he has a couple of areas that appear to be numb on his belly but it’s not bothersome.
He does have some issues with constipation (aggravation of prior problem) however we really haven’t had things “normal” since surgery. Since then he’s either been on chemo or antibiotics or both. And that makes the constipation worse for him. He’s on a pretty significant dose of meds to help with the constipation but as he says it’s a small price to pay for what went on.
I did ask him if he would do it all over again knowing what he knows now and said Yes without hesitation.
As a nurse I don’t see any problems with this surgery that I wouldn’t see with any abdominal surgeries. He had some delayed wound healing in a couple of spots but that too is normal.Hope this helps.
KrisVChrisna –
I can answer one question. There are internal stents that are used if needed to open a blockage in the bile system to allow it to drain properly. They can be metal or plastic. They are usually placed with an ERCP and at times they do clog so they need to be cleaned out or replaced, not usually daily though. Our GI doc said anywhere from every couple of weeks to several months. We opted not to do an internal stent due to the risk of infection that goes with them as Mark was already battling blood infections on a regular basis.
Externally you can have a bile drain which is what my husband had. He a PTBD placed – Percutaneous TransBiliary Drain. This placed a thin tube into the bile ducts upstream of the blockage. This allowed bile to drain to an external bag that needed to be emptied a couple times a day (normally). We weren’t normal and had complications when first placed but after surgery it worked fine and they pulled it a month after surgery. The idea of this is to take the pressure off the liver to allow it to work better. His bilirubin dropped from 13 to 8 in the 36 hours after placement.
If you go up to the search tab under the headings you can enter anything you want to search for and by going to advanced search you can narrow it down some. You could type en anything and read what comes up. It’s usually a lot but sometimes there are buried gems in there. You can also search by names too. If someone sounds very similar to your friend’s case then you can type in their name and read their story.
Hope this helps.KrisV
Chrisna –
My husband too had surgery…almost a year ago now. We were told that we were the lucky ones and has been said, it’s the only chance at a cure. There is a lot of debate about to do or not to do adjuvant chemo after the surgery. My husband chose not only chemo for 6 months but also 25 doses of radiation along with 5FU chemo. Our Onc felt it was the best shot at a long term remission or “cure”.
Right now his quality of life is not all that great due to the effects of the chemoradiation but prior to that he was working full-time and you would not know he was or had been sick. And once he recovers from this recent round of stuff I suspect the same will be true.
Surgery is rough. His was 14 hours and he was 12 days in the hospital and he didn’t return to work until September last year but he was working full time and feeling fine.
And just because surgery is recommended, it doesn’t have to be done. I am sure there are those who chose not to, just as some don’t do chemo or any other treatment.
Good luck with the 2nd opinion.KrisV
Crissie – So sorry that your Dad is feeling that way. Anger I can understand. I spent a lot of time that way too…..so did Mark at times. As for feeling that they aren’t listening to him, they may not be. Sometimes medical professionals get wound up in trying to “cure” everything that they forget to listen to the patient.
It may be time to sit down and discuss with your dad exactly what he wants. If they could make him feel better would he want to continue the chemo or is he done all the way around? If he wants to continue then I would make an appt with the doc/NP and sit down and explain what your concerns are (make a written list). You may have to get rude to get them to listen all the way through. Ask them to wait to answer until you are done. There are meds like Ritalin that can be used to increase energy or an anti-depressant or medications to increase appetite such as Megace. Ask if there are other medications for nausea (we used Zofran, prochlorperazine and Ativan but there are more).Then listen to what they say.
Your dad may still elect to have hospice and as Lainy said it’s pretty easy to deal with the. And yes they will help with pain, nausea and any other needs he may have. Their goal is comfort so ANYTHING that will help with that they are up for.
Hang in there and keep us posted.KrisV
Duke and Lisa –
Yes you should get up and move around. Cancer has a tendency to make the blood clot differently, making you at higher risk for blood clots. I usually tell my patients, at least hourly when they are awake. At least stand up and march in place to get the blood moving. And then if you are traveling – especially by plane or car – to move around every couple of hours. In a car take break and get out and walk around, check out the sites, have a bite to eat. In a plane you can walk up and down the aisle. There are studies that show increased clots in people after flying or driving long distance even if perfectly healthy.I do it too….sit in one spot, especially at the computer for too long. Usually the cat reminds me that she needs attention by getting in front of the screen.
KrisV
Duke –
We were just talking about the “end of times” yesterday on our way to Seattle…..We had the first of the four blood moons Monday to Tuesday and there is a lot of talk about that being a sign too. My husband says that he didn’t go through all this %^&% treatment to have the world end now. He says he will be really pissed.Congrats on a good scan. Love to hear that.
Have a great Easter.KrisV
