a trip to the er

reenie · Posted: Mon Jul 03, 2006 10:23 pm Post subject: a trip to the er

Had to go to er last pm. miserable experience. Sam was so altered from all the drugs for hiccups and so dehydrated I felt I couldn't wait 'til morning.

The one bizarre s/e of the oxaliplatin is neuropathy caused by cold (vigilant to a fault, we have managed to avoid that so far)-Picture me trying to get a bunch of er staff to listen to me about how he can't have ice water/can't touch any cold metal - it was a mess.

Sam's heart was racing so I think i did the right thing to bring him in. You never know. We were there from mid night til 8:15 am. Of course the hiccups stopped when we got there so I felt like an alarmist but they really had been coming every couple of seconds. they gave him two litres of fluid and never noticed that there had been nothing coming out. also after two litres and several hours, I asked if they were going to do any labs -they had drawn blood when they started the iv( they couldn't find the right kind of needle to access the port) and had just left it there on the bedside table. you guessed it, the lab wouldn't accept the blood as it was too old. finally had results and his potassium was at 2.9 instead of 3.5 All in all an ordeal I don't care to repeat. Luckily Sam slept through most of it. He is home now and feeling more like himself. We just do the best we can...

reenie · Posted: Tue Jul 04, 2006 8:32 pm Post subject: Re: a trip to the er

continuing my earlier rant...
I asked the pa if she could look at Sam's tongue because I was concerned about trush she had him stick his tongue out, it was furry, she said " maybe" and never came back in the room.

Thorazine caused halucinations. So Sam thinks I brought him somewhere where they put him in a cage. Then he went on about the shopping cart he couldn't get out of. Maybe it was the wheelchair and the bed with rails I don't know but it was heartbreaking.

He is a little better today. If hiccups don't recur I can take him off the Thorazine and use the zophram only. He actually came downstairs for a few hours today.

cedar · Regular Joined: 01 Apr 2006 Posts: 17 Location: Canada

reenie, you're right this is heartbreaking-I hope Sam is feeling a bit better again since you posted. A trip to the ER is almost always a disaster, why is that? My dad suffered unbearably in the ER, very sad. It's good that you're so vigilant and such an advocate. It's hard to be strong but we have to be. Take care, thinking of you.

rechargeable · Posted: Thu Jul 06, 2006 11:23 am Post subject: Re: a trip to the er

What an awful experience.

I'd be scared to give my dad thorazine for hiccups. It's so awful to watch a loved one be hallucinating and scared like that. I guess there really isn't any hiccup-specific medication though. In addition to Zofran, though, reenie, there's another "Cadillac of anti-nausea drugs" drug called Kitril that you might want to ask about.

Sorry I've been out of the loop for a few days. Had to go out of town to move a bunch of my things back home. I'm back online now, to the extent that I can be.

reenie · Posted: Sat Jul 08, 2006 5:52 am Post subject: Re: a trip to the er

Thanks to you both for replying, it makes me feel less scared when someone posts a reply- less alone.

Yeah, thorazine sounds quite drastic for hiccups. It is apparently the standard treatment for such episodes. They were certainly not your run of the mill variety.

We are getting Katril with his fluids- had been using aloxi which I think is in the same categroy.

I brought Sam to Oncologist for labs on Thurs and all agreed he was in need of fluids so that was taken care of there.

Dr. talked about stopping all treatment and going the hospice route. Sam was so altered from the meds and so sick from the latest chemo the Dr. said it was unfair of him to ask us to make that decision then. He will be awayfor 10 days and we can call in hospice anytime but we can also wait until he is back and look at changing dosage. I really don't know if Sam can go through anymore but it is hard to say "uncle". They have arranged for home health nurse for fluids these next 3 days. The nurse came and taught me last pm- Sam has a port so it was no big deal. This takes the pressure off us to make a decision right away.

Bottom line: if this chemo were to work he would get another month or two but they woul expect that extra time to be reasonalby good, not as bad as it has been for the past week.

So we wait and see if the rest from chemo and the additional fluids turn him around and then we face the big decision. Reenie

my4boys · New User Joined: 21 Jun 2006 Posts: 9

I'm not sure how to get to your earliest posts but I'm wondering how long you've both been going through this? How are you holding on?

rechargeable · Posted: Sat Jul 08, 2006 2:23 pm Post subject: Re: a trip to the er

reenie, my dad seems to be in almost the same boat as your Sam. They talked to him on the phone on monday while I was away and decided to postpone his next oxaliplatin treatment for a week and merely "evaluate" him on what was to be the next infusion day (this coming monday.) They really didn't like how poorly my dad was doing with weight loss and lack of appetite and energy, so I suspect they're going to propose trying something different or going the hospice route.

my4boys, I'm not sure if you were asking abou me as well, but if you were, my dad was diagnosed with PC in June of 2005. He had a total pancreatectomy in July 05, followed by rounds of Gemzar and Xeloda and radiation. A month ago they disocvered a major and rapid recurrence. We're not doing very well over here, though dad has been feeling somewhat better these last few days, and I think the Megace appetite stimulant is kicking in because he's definitely eating more.

my4boys · New User Joined: 21 Jun 2006 Posts: 9

I'm so very sorry. I just can't get over how quick this type of cancer moves. I've been reading though some of the posts and it seems like everyone is in a similar situation. Although there doesn't seem to be a consistent age.

Another thing, the only knowledge I ever had about pancreatic cancer was from seeing President Carter in those commercials. And to be honest they left me with the impression that pancreatic cancer was only genetically linked. When President Carter spoke of his 2 sisters, brother and father I made that assumption. I think it's great that his commercials get the word out but don't you think there should be a disclaimer of some kind? Or is that mostly true? Is that the case with Reenie's husband and your Dad?

Sorry about the inquisition and please don't feel obligated to answer you both have enough on your plates.

One thing I will say, you're both really strong people. I will include your dad and Reenie's husband in my prayers.

rechargeable · Posted: Sat Jul 08, 2006 5:34 pm Post subject: Re: a trip to the er

No apology necessary. It's comforting just to be in contact with others in this situation so I don't mind replying at all. I can see how one might get the wrong impression from Carter's commercials. I've read that only about 10% of pancreatic cancers have hereditary links associated with them. My father is the only one in our family who has had it, but you can bet I'll be looking into genetic testing if there is any available. (Soon as I get health insurance that is.)

Most cases of PC do occur in people who are older than 50, though, that much I'm pretty sure of.

reenie · Posted: Sun Jul 09, 2006 9:53 am Post subject: Re: a trip to the er

Hi my4boys To to view all posts by one person, go to the forum and under topics you'll see "last post" click on the author's screen name to find all posts by that person. There may be an easier way but this one works. You can follow my Sam's progression there so I won't go into the details here.

I saw the Carter ad in a magazine while in a hospital waiting room- another of life's ironies. As it turns out Sam is the first in his family but you can be sure I will educate our kids. I've also noticed a link with diabetes and while Sam doesn't have that, many in his family have suffered with it. My family has color rectal cancer running rampant- I view that knowledge as ammunition to be tested regularly.

I viewed all your posts and am wondering how you are doing?
Reenie

rechargeable

Glad your dad is responding to the megacees. Our oncologist says there may be room to wiggle with the dosage on the oxaliplatin. It really did a number on Sam. Doctor said that each new treatment is harder on the body than the last - makes sense.

The fluids are working wonders for Sam.( along with the katril) This am he came downstairs for a few hours. I can't find any foods that appeal but he is sure enjoying cold beverages again and he is really going for the ruby red grapefruit juice as it was restricted during the gemcitabine weeks.

Our son (13) is leaving for Boy scout camp today and came downstairs crying this am. Sam wants him to go and told him he didn't think anything would happen this week. It's a strange life all of a sudden. Crazy that we have these conversations...

Is anyone there helping you? I am overwhelmed sometimes and I have all sorts of help. I hope you have someone who can at least offer you a respite. Take care.Reenie

rechargeable · Posted: Sun Jul 09, 2006 2:45 pm Post subject: Re: a trip to the er

I have a support group, but it's very difficult. Taking care of my family is now a full time job and will be for a long time.

The rest of the story here is that my mother, who was my dad's caretaker through this whole PC mess, is also very sick. A little while after my dad's initial chemo treatments ended, my parents went on what was to be a very short vacation, kind of a cautious first step back into the lives of regular people. The day they got there, my mother developed a perforated stomach ulcer, and the ER initially misdiagnosed her as having the stomach flu. 24 agonizing hours later, she went back to the ER after going into shock and developing severe peritonitis, and nearly died on the operating table as well as in the ICU in the days after. She was in the hospital far away from home for 6-7 weeks before she was strong enough to travel up here to another hospital. My father was down there with her for three weeks but was feeling sicker every day. He finally came home because he felt he would be in the hospital himself soon, and indeed he was. His recurrence happened while she was still away. She remains hospitalized (going on 9 weeks now) but it seems likely that she will eventually recover. I just want her to get home now so they can be together (my dad's been too tired to visit her), even though I know I'll still be the caretaker.

I left my job in the city (a move I actually didn't mind) and moved home to do this, because there simply isn't anyone else who could. My brother lives far away and is married and has a baby son. He'd be here if he could, but he can't. (He has visited as often as possible and helped as much as he can, though.) Most of my closer friends aren't around here, and the people who are around are not available very often. So most of my support is over the phone and internet. But I manage. We have neighbors who do little things for us. My dad's been mercifully feeling better lately.

I'm so sorry your kids have to go through this at all, let alone at such a young age. It's so nice that Sam is still able to be encouraging to his son like that. Hopefully scout camp will be a good respite for him.

reenie · Posted: Wed Jul 12, 2006 5:21 pm Post subject: Re: a trip to the er

I am so sad that you don't have more help! It sounds as if you are doing a wonderful job there and your parents are fortunate to have you on their side.
One god bit of advice I got early on is to remember that on an airplane we are told to put the oxygen mask over our own face first or we won't be any good to anyone else who needs our help. I know that is nearly impossible to follow but if there is a way for you to get out of your house for a while or at least have a new face come in to visit and help it would do you the world of good.
Have you called pan can or amer cancer society to ask for assistance? Do your parents belong to a church or social club or anything? I understand what you have said about your brother's career and family, but maybe he could lend a hand now and again.
Wishing you well, Reenie

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