Topic: Another hospitalization

Well round #2 of chemo last Friday, gemcitabine and oxaliplatin for my husband. Only a week late due to the hospitalization for the last bout of Klebsiella sepsis. He did pretty well with it, only really having trouble with the cold sensitivity but by Monday we were back in the same boat, temp up to 102 with chills so sent back to Seattle for admission through the ER. They think it the Klebsiella sepsis again although this time the blood cultures got screwed up and were not drawn until after he had antibiotic. I guess the first draws were contaminated. So now he's getting the chemo port taken out to eliminate it is a source of infection. No one including me seems to think it's the source but they need to eliminate it. The good news is that the oncologist has already said we are staying on schedule now no matter what. He is worried that if we don't then it gives the cancer too much chance to win.
I didn't get to be with him this hospitalization though. I was getting my own stay in the hospital (and not the same one). I went in Saturday for chest pain. My husband said he knew it was bad when I wanted to go it. I got the full cardiac workup including cardiac catheterization (angiogram) yesterday. Cardiologist says it's all negative. He also told me I need to eliminate stress in my life. I wasn't sure whether to laugh or cry at that....how the hell am I supposed to do that? The only good news is...I have a heart and its working fine. Then the only way they would DC me from the hospital is if I PROMISED I would say home and not run to Seattle immediately. I can't go up until they get ready to DC him.
I feel so damn guilty sitting here at home while he is in the hospital. Although the docs are great letting Mark do all the consults on speaker phone so I can hear and ask questions.
And lastly my son will have his radioactive iodine treatment next week and will be done...get to ship him off to college so maybe that will be a little stress eliminated.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

You have certainly had your hands full! Stress?? I'm sure you have NONE of that! I can't imagine trying to juggle some of that! I'm glad you were discharged and are feeling better. I know you want to be there for Mark but if you don't take care of yourself, also, you just might have a recurrence. It sounds like he has a wonderful group around him, letting you listen in. At least that helps.
Take care of yourself so you can take care of him.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Another hospitalization

Not sure how I want to answer this but if I was told to stay home I would worry more not being there with Teddy! You know yourself better so listen to what you tell yourself! Where does your son go to College? I have 2 in College now and 1 going next year. I know that is stressful too with all the things needed to do to go away, I hear it from my daughter! But that's a good stress compared to the other kind. If you stay home awhile, is there anything you can do? Like taking walks 2 X a day or any hobbies? Something different to change the whole atmosphere. That is so enough with the Hospitals ya hear? Now that's an order. Let us know how you are doing, like Kris says you have to take care of you before you can take care of hubby!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

Lainy and Kris
Thanks for the support. It is really hard to just sit here but I know that if I don't it will make things worse.....I am actually catching up on some DVR shows that I haven't had a chance to see plus I have some fun reading to do. My daughter is being very helpful and have the little grandbaby running around helps some. I doubt I will stay away the whole time....I will probably go up tomorrow afternoon maybe and stay.
My son will head off to Central Washington University in Ellensburg Wa....middle of the state. He's majoring in exercise science and minoring in nutrition. He wants to be a personal trainer or life coach....maybe a trainer for a sport's team.
They got the port pulled a it ago and now they are finding something growing in the blood cultures and it does NOT appear to be the same bug. Now it looks like something new and maybe the port didn't need to come out. It's too late to worry now.
Thanks for the support.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

Oh, Pat there is no better RX than a Grandchild running around! Glad to hear you found some fun things to do. I had a feeling you would be going up tomorrow! So sorry to hear about the new Bug. Cheeze, sometimes can't win for trying! Be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

We are home now. A little stress at DC as usual, especially when dealing with resident and attendings and all that. Just put my foot down and said how it was going to be. Too tired to argue with them anymore. And when I get tired i get crabby.....have to laugh though Mark keeps telling me to calm down and control my stress....lol....not sure that is going to happen.
I was a new bug....Flavimonas (sp?) which the infectious disease doctor says is very common in those with any sort of GI Cancer. The really good news was his body fought this off on its own since the antibiotic IV they gave him didn't cover this bug. They did send us home on oral antibiotics for 2 weeks and we will do chemo come hell or high water next Friday.
They want a consult with a GI specialist since it appears he is leaking bowel bugs into his blood stream somewhere. They are talking about doing an ERCP and stents but I am still wondering if the risk of infection with stents out weight risk with the continued blood infections. Questions to ask I guess.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

Just want to jump in here and say that when Teddy was getting his blood infections the ONC would always start him on Levaquin and would not wait for the cultures. He was right every time, and he said, Levaquin will kill any bug you may have. I have suggested it to others on our Board and it worked for them as well. Just an FYI. At least Mark is home again and that is always good. I apologize ahead of time so here goes, can't help it....if he is leaking bugs has the ONC suggested "Raid" OK I feel better now. You 2 have a nice weekend.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

I have to say Lainy, you crack me up....that is so totally something I would say or at least think of. Even my husband got a chuckle out of it.
We are on Levaquin and it seems to be the drug of choice now....at least the third time we've gone home on it. They are talking about just running him a 7-10 day course after every chemo since the chemo seems to be the trigger. We'll see.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

YEA!!!!!  I was right. Imagine that, first time this year! Glad Mark got a chuckle
I aim to please. And some times you do sound like me.....be very careful!  LOL

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

Sorry to hear about another hospital stay for Mark.  I know how frustrating that can be.  I had a difficult time with fevers and infections from May to July of this year.  It was so bad that I thought of giving up on treatment and just letting go.  One time I came home from the hospital on a Friday and was back in on Saturday evening due to fever and another infection! 

After being on so many antibiotics, including one for a fungal infection which they found in my biliary tract and bloodstream, the end result was they took out my port and I haven't had any infections or fevers since.  My last hospital stay was the beginning of July.  I feel much stronger, and hopeful now, and am once again fighting this awful disease with chemo - Paclitaxel.  Thankfully, I have good veins and have not had any trouble yet with getting it intravenously every two weeks - off a week then back on.  Yesterday was my sixth treatment, and as you saw in the good news section I got a good result from my 9/4 CT scan so the chemo seems to be working for now.

Sorry for going on with my story, but I just wanted to let you and Mark know that sometimes there are really tough and dark times with this disease but keep fighting and stay hopeful, as you seem to be doing.  I know how tough it is for the caregiver.  I see it with my daughter, who goes to all my treatments and appts with me.  I feel for you, as I feel for her.  I wish there was something I could do to take the stress from her, as I'm sure Mark feels the same for you.  Saying thank you all the time seems so inadequate for what you guys go through with us.  But that's all we can do is say thank you, from the bottom of our hearts,for always being there for us!

Peace, Love & Hugs to you and Mark!
Mary

Re: Another hospitalization

Mary - no apologies needed for telling your story. I love hearing them and it definitely makes me know I am not alone. Those that had traveled the path before you are the best guides. They did pull the port out this time and are culturing it but the Infectious disease doc doesn't think it's the source but we had to eliminate it. We are not back looking at what's left of the biliary tree and the anastamosis between the bile ducts and small bowel. See GI doc on the 20th.
I know my husband tried really hard to reduce my stress and he will sometimes hide things from me....especially when his temp goes up. This last time he thought he got away with it since I was in the hospital and banned him from coming to see me. The kids are my eyes and they caught it so he ended up going anyway. I got on him pretty hard telling him that this makes my stress worse, not less. Think he gets it.

Kris

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

Kris, sometimes you crack me up, not laughing at you but kind of with you. I love the way you get around these situations with Mark! The kids have their eyes on him, great! That expression always reminds me of the movie, The Fockers with Robert D'Niro and he keeps telling his future son-in-law, "I have my eyes on you". Sometimes I thought my eyes were coming out of their sockets!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

Ah, Lainy you can laugh at me it you need.....I laugh at myself more often than not. I try like hell to just keep laughing and finding the humor in all this....the flip side is if I quit laughing I am afraid I might start crying and then  I wouldn't stop. The chaplain at the hospital always stops in when we are there and she told me the other day that she wasn't sure she could keep a smile on her face and the laughter coming like I do if she was in my place. I told her that's just the way I am. Laughter really is the best medicine.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Another hospitalization

Kris,

So true - laughter is the best medicine!  In my family that is our release when things get too stressful.  It does really help.  I know how Mark feels about hiding the fact he has a temp.  When I was going through that really rough patch I mentioned in above post, they had me taking my temp a few times a day when I was home.  If I did have a temp I wouldn't call the doctor, I would try to wait it out and see if it went down.  Sometimes I wouldn't even bother taking it.  My doctor started saying that I was doing selective temp taking.  We laughed about it.  I was just so tired of going back and forth to the hospital and being stuck in there.  I'm sure Mark feels the same.  He doesn't mean to increase your stress level.  We do realize how hard this all is for the caregivers.  I don't know what we would do without you guys.  It does hurt to seeing you traveling this path with us.  I thank my daughter every day for being with me on this journey.

Lainy,  I love that movie!!!  I was just talking about that with family members this week and saying I have to watch that movie again - I need a good laugh!!!  DeNiro and Ben Stiller are comedic geniuses!!!

Stay well guys and laugh often,
Mary

Re: Another hospitalization

Mary, this has nothing to do with anything but...I am watching the best movie today one TCM. Battle Cry from 1955 written by Leon Uris who wrote Exodus. It is totally amazing. The oldies are the best. I know you all won't believe this but I LOVE War movies!!  Go know

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another hospitalization

My ex-husband would appreciate that.  He loved war movies.  I'm not a big fan of the but there are some good ones.  Not familiar with the one you mentioned but it's from the year I was born so it's got to be good!!!  ;-)