kvolland
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Patzel –
I am glad you are taking care of yourself. Is there anyway that you can stay closer to him so you are not having to ride the ferry everyday? Is there a way you could maybe stay one night in his room or an inexpensive hotel close by? Just a thought. When Mark is in I stay right next door.
The opiods could certainly contribute to the hallucinations and personality changes. What is he on for meds and at what dose? Have they tried anything like Haldol or Seroquel? Both of which are anti-psychotics that might help.I don’t want to bombard you with suggestions like Lainy said but I am more than willing to help any way I can. You can email me directly if you would like at: dazoo3563@comcast.net and I give you support as needed.
Hopefully you get some good sleep and take care of yourself.
KrisV
Patzel –
One thing I can say is that if it is cellulitus which it very well could be…..In my personal opinion I am not sure the Penicillin is the best choice for an antibiotic. Some sort of Cephalasporin like Cephalexin or the IV equivalent might be better. We see a lot of cellulitus and usually treated with oral antibiotics…one called Kelfex. You may ask about that. There are some other broad spectum antibiotics that might work better. Not trying to second guess the docs but sometimes resistance is easy to build up to Penicillin.
Also have they checked his liver function tests or an ammonia level both of which could lead to hallucination and behavior changes.
The other thing you might ask for is somethind like Haldol to keep around for hallucinations and such. It is an anti-psychotic that works well in situations like this.
I am glad you finally got him airlifted and that you were able to go with. Hopefully they can get him all fixed up so you can both go homeKrisV
Well ONC came in a bit ago. I went to leave and Mark wanted to know where I was going so I stayed. He did tell him about the frustration levels this week and they talked about the scan in two week. Mark says he feels like he is spinning his wheels and going no where. He thought it would be like taking Antibiotics and he would feel better….Hmmm most people really feel worse with chemo. Doc offered him an antidepressant and he declined. He did say we would revisit it in two weeks.
Numbers are all good. CA 19-9 is trending down which is what we want and everything else looked good so we are off on another round. The only thing was his blood sugar was 421. They were a little freaked out but we covered it and by lunch he was down to 177. Good man decided salad was a better lunch today.KrisV
Will keep you in our thoughts and prayers for the PET scan. I know our ONC said that a lot of things can affect those numbers so they can be off because of something non-cancerous. So keep up positive thoughts that it is something else.
KrisV
He doesn’t say the words as much but I know when he says them that he means them. I heard them many times with my ex but it came with a serious alcohol problem and when the alcohol was there….so were his fists. I was very leery when Mark seemed too good to be true. But he would kill himself first before he ever raised a hand to me. He has been there for me when I had my own significant struggle with depression and he helped me put the toxic relation with my mother on the back burner. We have our arguments which usually means and stomp and shout and he just waits until I wind down to say anything then we talk it out. He’s learned that I often need to vent then I can deal with the problems. My ex died in November from his alcoholism and Mark was there for me through it….It was a little rough since my son was his only real living relative (my ex’s father had too much dementia) so i ended up doing all the arrangements for him and Mark held my hand and never said a word. I really did get lucky.
Okay so all this talk reminds me again how special he is even when he is being a grump.
Normal means he’s not growling at me or saying things he doesn’t really mean. I have to say Mark is one of the most mild-mannered people I have know. He is always glass half full kind of person which offsets my half empty thoughts. He never raises his voice and normally he would die before doing anything to upset me. I got real lucky when I went on the blind date with him….I had come out of a real ugly one and I guess it just made me appreciate it more.
KrisV
Carl – The teaberry I would try but you can keep the fluff. My sister had it in a couple of other flavors too….strawberry and chocolate. Still wasn’t great. Fluff is great to make fudge out of at the holidays and maybe Rice Krispie treats…other wise I will stick with good old PBJ.
We did make it to chemo this morning. He got up, got ready then got on my case for running a little late. Made it to 4 miles from our exit and spent 90 minutes sitting there doing nothing…..BIG wreck just ahead of us. People actually got out and walked around. I guess I am glad I was running late. Just did labs and I am going to take my walk soon so Doc can talk to him. I think he just had a bad day because we seem normal now. Just to keep me guessing.
KrisV
Again thanks to all for your support. It made me feel so much better. Knowing that some of you have gone before me and are now going through it yet again with me. Things feel so much more positive today.
Carl – My sister brought some fluff home a few years ago….can’t remember what kind and we all had a fluffernutter sandwich. I ate a bit of it and thought it would have been something I would have liked when I was 10. My son loved it and it think he was fourteen or so. I do however like the REAL maple syrup we get for Christmas.
KrisV
Oh Nat, so sorry for the not so positive news. You will attack this as you have attacked it before and come out the winner. Keep those thoughts positive and keep us posted on that plan of attack.
KrisV
I have never heard of teaberry…..must be one of those East coast things. Maybe like the marshmallow fluff sandwiches my sister in Vermont is always talking about.
KrisV
Carl – I think it sounds pretty good. Attitude is so very much a part of this so if Lynn feels so positive about it then that is half the battle. 70% sounds pretty good so does maintenance which means stability which is equally as good.
Will keep you in thoughts and prayers.
KrisV
Thank you Percy, Lainy, Carl and Darla for all your support. Getting it off my chest seemed to help a lot too. He’s home from work now and seems to be doing much better. He even bought dinner on his way home plus he got me a blackberry milkshake which may not be roses but his way of saying sorry. Then he asked me if the car had gas in it for the trip to chemo tomorrow…..it does. I guess it’s in the past now and we move forward.
Thanks all again.
Yeah I know looking back on it I would have done things differently. I think I would have set up a Facebook and kept that updated….it would be all in one place and I could include Mark and TJ since both were going through things and that way I could keep both groups updated. I also would have turned Mark’s phone off as soon as he went in the hospital the first time. Once we got home spelled it out that there were NO visitors including family until after we had been home for 3-4 days. Upset a lot of people cause that included Father’s Day but I didn’t care. We both needed to rest. Even though I didn’t ask my daughter took the baby to some friends and they stayed for a few days. I was glad I did.
I still battle snide comments periodically…..most of them (mom and sisters) want to go to chemo and I have to say no. We are only allowed one person in the room and I am not giving my spot up.
I hope that if we ever get to the point of hospice that I can manage them through that…..I have a great hospice team that I work with and I know they will help. Sometimes I have nightmares about how that will go….not him dying but me getting shoved out of the house so it’s about all of them…..therapy is helping me with that.Kris
That’s it. I found out the other day (and yes this may sound a little petty and I can’t repeat what my daughter said because it was NOT g-rated) that several of the people that I had friended on Facebook that were mutual friends of ours (or so I though) had unfriended me because I did not personally keep them updated on his progress through the surgery and hospitalizations. I was stunned. Do these people not realize that he was SICK and I was overwhelmed with his care? Never mind that one I know the answer. If I had to personally keep every one updated….I would have no time for anything else. Of course these were the same people who thought I was being overprotective and hovering when I stayed at the hospital with him. No thought given that he really was not able to hold a phone or talk on one let alone even feed himself. Some people’s kids….
Actually I say Russia as everyone always used that as a generic term because of the Soviet Union…..we are from the Ukraine really……not too far from Chernobyl but well before that was even built. They saw the writing on the wall and while they were not Jewish they did not like what they were seeing so fled. The unfortunate thing is not all of the older kids and their families came so some are still there. My stepmom tried to look for them but the records are such as mess that unless she wants to go hand search she ran into a wall. I actually hope to be able to some day.
They all settled in North Dakota, Montana area and my grandfather worked on building dams such as the Hungry Horse Dam in Montana and the Grand Coulee dam here if Washington where he met my grandmother….she was waiting tables in a cafe. She was first generation German.It’s funny how we all came to be where we are now.
KrisV
