kvolland
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Oh Lainy, sending lots of positive thoughts and prayers for you. I hope that they say it was an error and then you can deal with other stuff. And you know Teddy will be there holding your hand.
KrisV
Matt –
Welcome the family here. Your story sounds like my husbands although he did have some right sided pain which we thought was gallbladder pain. Ultimately he developed severe jaundice. We were referred to Seattle where we met our brilliant surgeon and got the awful diagnosis. He was diagnosed in May 2013 and he is only 50.
My husband’s surgery was 14 hours and then he had 12 day hospital stay. His recovery was really slow too. He lost about 50# which thankfully he had to lose. He dropped from 240# to 190#. Protein is your biggest friend right now. All those good things like meats, eggs, cheese, milk, etc (if you eat them) and then you can do whey protein powder and make protein shakes. We used frozen fruit, ice cream, yogurt, milk and a scoop or two of protein powder then blend it. He didn’t particularly like them but he drank them.
Are you planning on doing adjuvant chemo? or radiation? We just finished 6 months of every other week Gemzar and Oxaliplatin. And right now we are sitting in the hotel room waiting to start chemoradiation tomorrow of 25 doses IMRT with a continuous infusion of 5FU.Hang in there and keep us posted.
KrisV
That would be really great. Would love to see it in action for everyone. Maybe they could even use it to detect cancer before it gets too far along.
KrisV
Hi Valerie –
Never apologize for a long post….we have all done them at one time or another. And welcome to the best little family. Sarah is very lucky to have a friend as good as you…..everyone should have someone like you.My husband is 50 years old and was diagnosed in May of 2013. I would love to say he was the picture of health but that’s not so. He had Hodgkin’s lymphoma as a teenage which left him with some health issues and like me he likes to eat too much. This disease loves to pick on all walks of life.
As for help, is Sarah disabled at this point? If not I would say start working on that if she is not working. I would suggest looking at your local Area Agency on Aging and although it says for aging, it may be able to provide some case management to find help. Also if she has her own private insurance, look very closely at what it will pay for….some plans, a very few will pay for some private pay care such as custodial care…housekeeping, bathing, dressing, etc. The other thing you might look at regardless of her insurance….private or Medicare is if Home Health would be of assistance. They could provide a nurse to assist with disease management (pain, nausea, weight loss, etc), a bath aide to assist with bathing and things such as physical therapy.
Also if they are draining the fluid out of her as often as twice a week you may want to talk to her and maybe she can talk to her doc about putting a more permanent drain in place then she can have nurses come to the house and drain it as needed or even teach her how to do it. It would make life easier.
Hope this helps some and feel free to keep asking questions.
KrisV
Silly, question but is he taking his nausea medications. My husband is really bad about the whole I am just a little nauseous but I don’t need any meds….we battled it until I just stuck them in his pill box and he took them without question.
I understand about the “special case” that has kind of what we have been and then we also have been the if anything can go wrong it will. We battled blood infection three times after his resection. It was ugly.
Also for the temp if you aren’t taking Tylenol for the temp, you may want to see if that knocks it down some. Or ibuprofen (Advil) if he can take it. It may make him feel a little better to keep the temp down.Hope the drain change fixes things for you both.
KrisV
We are getting ready to start IMRT with chemo at the same time of 5FU plus interferon injections three times weekly. We were told that the radiation alone could cause some nausea since the area where they are irradiating is so close to the stomach. In my husband’s case it probably will be part of his stomach since everything shifted a little with his liver resection. My husband also had radiation 37 years ago with his Hodgkin’s lymphoma and he said he was pretty tired through it and he could only eat just before he had his treatment.
Also when I deal with my patients who have or having radiation, fatigue can be a problem with the radiation. To me is just seems to be part of it….I mean it is radiation.
The temp I am not so sure about. I would make sure his is drinking plenty of fluids since dehydration will make you run a low-grade temp. Also can increase the fatigue levels. For the nausea if you don’t have meds for nausea then I would ask for some, something like Zofran (ondansetron) or prochlorperazine that he can take. Lastly, how long has it been since his lab work has been checked such as his white count, red count and all that. He may have a low grade infection or be anemic.
If the radiation ONC doesn’t want to be helpful go back to your medical Onc.KrisV
Thanks Darla, I try really hard to just let it go but sometimes it’s just so frustrating – to wait almost 5 hours total to them be told no go….UGH! But we know the IV nurse really well that tried to put it in and we know she tried her best.
Lainy they tried the PICC in his left upper arm. She did three different sticks but he bent the guidewire every time. His veins seem to be very small and his valves in his veins very stiff. They weren’t even able to try on the Right arm since that is where he had his blood clot and they won’t even try.
We are going to have the Port placed in the right side since he had so much scar tissue in his left shoulder from a previous surgery and that is where the old one was at.
I know the port will work, we just wanted to stay away from having another surgery.
KrisV
Oh my Gosh, If I survive getting to the point of having the IMRT start then life will be much easier. I feel like we are chasing our tails and not getting anywhere. All the appointments are set and ready to go. We have the plan for Mark to get there by himself and Plan B for when he needs help all in place.
BUT, there is always a but, we can’t get a line in him. Yesterday was the mapping and field verification….he wore is Star Wars belt buckle and that went well. They had us scheduled for a 10:30 PICC placement but forgot to tell the gal’s that do it so we ended up waiting until 1:30 when they had time to squeeze him in. An hour later and three attempts at a PICC line and it was NOT successful. So back to our ONC office. His wonderful scheduler changed the order to a Port and then off to the surgeon’s office. We are scheduled now for Tuesday for Port placement. Then radiation/chemo on Wednesday.
Then as all this is going on and we are waiting for PICC placement he starts getting chills sitting next to me. Running a 100 degree temp and hasn’t been telling me he doesn’t feel well for the last couple of days. UGH! Thankfully we have antibiotics at home and started those last night. He says he feels better today.
This has been crazy this week. And no rest this weekend as we are off wedding dress shopping and other crazy wedding stuff.
KrisV
Ah Lainy you just can’t win right now can you. I am glad that you have such wonderful family support to be there with you through all this. You know that if you need anything, any of us will do what we can. Sending positive thoughts and love your way.
Hugs and Kisses,
KrisVThat is great. I will get signed up for it as soon as I get to a real computer. And I will pass the word.
KrisV
Stella –
So sorry about how the scans turned out.
I would definitely see if you have a hospice nearby that would be available to assist, especially if your husband opts not to do any chemo. They would really be a valuable assets for you too.
Also the fluid around his lungs and in is abdomen can be drained. Carefully because sometimes there are reactions such as the kidney failure as has been mentioned. They are usually fairly easy outpatient procedures. I would suggest that if you talk about doing it that you discuss putting a drain in his abdomen and having it left in. As scary as it sounds, you could be taught to drain it at home for comfort. Same for the lungs too if the fluid builds up rapidly. Even if you opt not for hospice maybe you have visiting nurses of some sort that could help especially with the drains.
You are going through a tough time and remember that no matter what we are here for you. Also remember to take some time for yourself to de-stress…I know easier said than done.KrisV
Dear Pat –
Welcome to the family. You have definitely been down a road with your husband. I am with Lainy and think maybe a 2nd opinion might be in order, sometimes having a second or third set of eyes on it may help. There can never be too many ideas or suggestions. But it does sound like the docs you are working with have a plan and are adapting well.
And you have gotten some rough weather back there this winter. Hopefully once summer rolls around things will be better for you.
I would also talk to your doc about getting something for you to help with the panic and stress. I am actually on a fairly stout anti-depressant to help with the panic attacks that I was having back in August and September and a really low dose of an anti-anxiety at bedtime to help me sleep. I am sure that I would have gone crazy without those two things. I also have a gal that I see on a regular basis that I can talk to and say anything to which is nice to be able to vent to her and let out everything I keep inside.
Hang in there.KrisV
Rose –
Welcome to the best little family ever. As you have already seen we have all gone down this road together.
To me the symptoms sound more like infection rather than a side effect of the medication….although sometimes when a person’s white count gets too low you can get neutropenic fevers which is just simply related to the white count being too low. I would really worry about infection in the blood even though he is on antibiotics…..sometimes they can be treating the wrong bug. We had that once with all of my husband’s hospitalizations for infection. I would doubly worry about it with stents in since that does seem to be a source of infection…..we haven’t dealt with that one yet but who knows.
I would ask lots of questions of the oncologist and maybe you can even get an infectious disease doctor involved….that’s what we had to do and it helped a lot to have someone who only dealt with infections on board.
Good luck and keep us posted.KrisV
Yes, Marion, we opted for PICC this time rather than a port since we had so many issues with the port last time. Mark had his choice and we really discussed the pros and cons then decided the PICC. A friend of mine is an IV nurse and she voted PICC since it relatively short term and that is what we are hoping for.
The wedding stuff is kind of nice and sort of distracting about the cancer but it also adds a new layer of worries but I have help with it so it’s all good.
Thanks for the positive thoughts.
KrisV
