Topic: Roller Coaster Ride - No kidding

I read so many posts about this being a roller coaster ride and I had no idea. We had out first chemo on Friday - Gemcitabine and oxaliplatin (thought it was Cis but not). Things went awesome....no nausea, no fatigue, just some of the cold sensitivity from the ox and some horrific night sweats. I even felt happy enough that I went back to work and let him take our son to deal with the surgeon (he had a thyroidectomy and radical neck dissection for thyroid ca and then abscessed needing I and D of the wound). Things went really well, I got a full day in which was only my 5th day of work since May.
Got home and Mark was parked on the couch complaining of not feeling well. Took his temp and it was 102.7. So back in the car for the 2 hour drive to Seattle and 5 hours in the ER and they decided to admit him. I am beginning to see infection/elevated temp as probably the biggest part of our roller coaster.
Then I had to get really mean last night. They took us to the floor and were getting ready to put us in a semi-private room and the guy in the other part of the room was coughing and hacking and sounded like he was really sick. I said NO WAY. I put my foot down and insisted that they find a private room. I am tired of putting my husband who is already fighting some sort of infection in a room with some one who has who knows what. Took a bit of arguing and them telling me there were NO private rooms and me threatening to take him home and the night shift Resident Doc got involved and backed me up. Suffice to say we are in a private room now. Amazing that the floor we are on has a bunch open.
Still waiting to find out if he was septic this time again. White count was normal and so was all his liver functions so I am less worried now. But they are talking about taking out the chemo port as a possible source that will bum me as it will mean another surgery at some time to put another one in.

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: Roller Coaster Ride - No kidding

YEA! Good for you! What could they have been thinking wanting to put Mark with an infection in a room with a sick man who is coughing? I would have thrown a hissy! Teddy used to get what they called blood infections 2 X a year. High fever and chills like I never saw before. Then he would get so weak I would have to take him by ambulance to the ER. They would use an IV of Levequin and that worked the best for him. Usually took about 3 -4 days and home again....to begin the roller coaster ride all over. I hope your son is doing great now. Be Strong and let us know how Mark is doing! (Ha, look who I am telling to be strong, the lady who almost took the Hospital down)

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: Roller Coaster Ride - No kidding

I'm happy to hear you got your way! But sorry you had to fight so hard for that.  I had a couple of blood infections, too. And spent a few days in the hospital with them. I believe they gave me Levaquin, also, and I was usually out within a few days.
I hope it settles down for Mark. They threatened to remove both my port and my pump, but I wouldn't let them! And I guess my body finally got used to them.
Good luck and praying for good results from gem/ox. If he can handle the cocktail, great, because I don't think many cc mutations can live through that combo.

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: Roller Coaster Ride - No kidding

And I call it a game of chutes and ladders at times... You climb and climb the ladder only to find yourself sliding down a chute.

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: Roller Coaster Ride - No kidding

Hi Cookie, can't we play something more sweet like CANDYLAND? Remember that one? I loved that one as my DAD actually had a Candy Store downtown KCMO and it was called CANDYLAND! I worked in it from the time I was 10 even made faces on his freshly made suckers! And his CaramelKorn warm off the slab To die for! Yes, it was a sweet childhood.

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: Roller Coaster Ride - No kidding

Yummy!! I'm hungry now!! For CrackerJacks!!

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: Roller Coaster Ride - No kidding

I want something other than hospital food...not complaining because it's pretty decent food just tired of hospital food. So CarmelKorn, Cracker Jacks or whatever would just be good. Figured out last night that I have spent 24 nights in this hospital since June 2nd with either my husband or my son. Some of the staff have even started to recognize me.
Blood cultures just came back and the two peripheral draws came back positive for gram-negative rods.....my guess is the Klebsiella again. They are getting ready to do another CT of his abdomen to see if there is an abscess in there that they missed two weeks ago. I still think it is probably the anastamosis of the small bowel and the bile ducts. The GI doc thought they might be narrowing and causing issues thus needing stents with an ERCP. I hope not but that's about where it goes.
Feel like I am verging on my own nervous breakdown now.....this plus my son's cancer....it's just about too much. Especially trying to be in two places at once. I actually just hoped they would be in the hospital at the same time.

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: Roller Coaster Ride - No kidding

Aw, I really do feel so bad for you as it was about all I could do looking after 1. Please don't worry about the stents. Just make sure they give him the sleepy time stuff! Ask if they will give a whiff or 2 to you!Actually if it is a stent problem he will feel so much better after he gets the stent. You are going through so much can you ask your DOC from something to just take the edge off? I am not good with Meds so I just used 2.5mg of Valium when I felt it was needed and that worked for me. Like I said, just to take off the edge. BTW our Hospital; had a fabulous gift shop that Robin and I went to often, it's a good little break in the day and we also lucked out on the Hospital Cafeteria, we loved it. Sometimes we would ask our youngest who was 14 then, where he would like to do dinner and it was always the Hospital!

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: Roller Coaster Ride - No kidding

I have had an appt with my doctor twice in the last two weeks to see about getting something but I end up having to cancel it because we are back in the hospital with one or the other. I try really hard not to take meds at all....well except my blood pressure stuff but I think something to take the edge off will help. I am very lucky that I have a great counselor that I have been seeing off and on for several years so I already have a great bond with her. She will even just do phone calls if I can't get into the office. It helps to be able to vent to someone who makes no judgement on what I say.
I have come up with things I will never say when this is all over with....the top of my list is "How are you doing with all this?" I fight the urge to scream and say "HOW THE ...... DO YOU THINK I AM DOING?" but I control myself and am polite always. And then the fact that his family is not overly supportive does not help (They would be happy if I disappeared) so I get caught in the middle trying to keep them and him happy then taking the blame when things aren't right.
And of course they all think they have medical degrees so despite the fact that I have RN behind my name, I have no clue what is going on and am being too smothering and overprotective of him.

Sorry to vent.....just had to deal with family stuff again so by dander is up a little.

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: Roller Coaster Ride - No kidding

Oh My Gosh! To Take a line from a Seinfeld show, "Family, they can be the worst!" Knowing me the way I do at this point I would have written them off my list. As if you don't have enough on your plate! Do they understand what CC is and what he is going through or are they in denial. Guess one could have a sit down as Teddy would say with the leader of the pack and ask that person to talk to the rest. Yikes! Glad to hear you are working with someone and your DOC. You rally need to make some moments for yourself, notice I said moments.

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: Roller Coaster Ride - No kidding

Best line award goes to this:

"How are you doing with all this?" I fight the urge to scream and say "HOW THE ...... DO YOU THINK I AM DOING?"

went to breakfast with some friends...not ONE asked how my husband or
i was doing...so elephant in the room that NO ONE talked about.

on the way home one lady i went with asked "um so how are you doing?"

I asked "Do you want a real answer, or one that will make you feel ok?"

seriously WHY is cancer such a hard thing to talk about?

Sorry for your troubles... you definitely have a double whammy...
no no no fun!
Dorien

Re: Roller Coaster Ride - No kidding

My family has been pretty good. My sister spent the time to go online and read about it. I know she had been on this site and read up a bunch so that helps. So have a couple of the kids. I suspect that my husband's sisters have but they want me to dribble out every bit of information and when I don't then I am leaving them out of the loop. We tried the one person as the contact and then forward emails but people got impatient and bypassed the system. I now just tell them when there is news and ignore them where there is nothing to say.....plus I turned off his phone so they can't bypass me.

People really don't know what to say but some of the things they do say are outrageous. I had one lady asked how long they gave him to live. (uh, duh he doesn't have that expiration date on his behind so I have do idea). Also have people say that it's too bad he's such a drinker and he never really has been then you get the look of pity thinking you are in denial. I want to print pamphlets up to hand out.

It's just crazy. I am glad I found you all....this has helped so much. I always tell my patients to find something....a support group or something so people can compare stories. If you have a problems someone has dealt with it and has ideas. Love it.

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: Roller Coaster Ride - No kidding

Hi Kvolland,

You have so much to contend with - no wonder you feel like you are having a breakdown.  I know it is hard but making time for you to see your doctor is a good idea.  It's to easy to neglect yourself at the moment.  When my sister was first diagnosed, my GP gave me something to take away the horrible anxiety and sick feeling in my stomach.  It was a low dose blood pressure tablet that I took when that horrible stomach feeling was there.  There may well be something you can get that will help you.

Clare

In the stars now . . . .

Re: Roller Coaster Ride - No kidding

I'm lov'in your attitude more and more. OK so this is how I handled the emails. First I sent out 1 major email to all friends and family that I just could not possibly keep repeating and repeating the reports and the things going on and from now on I am sending a nightly email to everyone. I am starting to wear down and the best thing you all can do to help me is to let me ease up on the phone calls. I appreciate your concern but we are now going to do it this way. It worked! I was nice and not snotty and for 3 months that's what we did. Oh my goodness the relief I had. I explained it to Teddy and he was all for it. Then when they would call and want to talk to him it was easy breeze and a short hello so he didn't wear out either. People are funny. Anyway, this worked for us.

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: Roller Coaster Ride - No kidding

Oh boy, I wish I could do email that would make it so much easier but texting is the wave in our lives. Initially when he had surgery we had it all worked in a phone tree. One family member that would take a text from me or one co-worker and then they would forward it on. It worked for about 4 hours into surgery then when there were no updates everyone assumed that they just weren't getting information so it reverted back to me (and after 14 hours it was awful). I narrowed it down again but I can't seem to get his family to back off.....of course there is a HUGE history there. I have never been good enough for him and have battle that from day one. Now I don't care. I give them information when I have it and ignore when I don't. I also turned the phone off in his room so they can't bypass me and bug him. Maybe it is overprotective but it's not his job right now.....his job is to get well and beat this thing. I really just quit worrying about what other people or think or care, as long has Mark is comfortable and not upset.
I think I probably wouldn't be so overwhelmed if it wasn't both my husband and my son trying to wade through this. The nice thing is my son is able to deal with his friends so I don't have to and that takes a bit out of it.

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: Roller Coaster Ride - No kidding

YOU GO GIRL AND WE ARE ALL 200% BEHIND YOU! I WOULD CERTAINLY WANT YOU IN MY CORNER.

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: Roller Coaster Ride - No kidding

Well the docs are still standing and scratching their heads. CT scan came back negative for any abdominal abscess from the surgery and surgeon says he doesn't see any reason to do the ERCP or any exploring right now. I have pushed hard NOT to pull his port unless we can prove that the infection is coming from there. Initially they said they had to pull the port to find out but now they are saying there is a series of tests that they can do that can pinpoint the port....okay let's do that people rather than have to take the port then ANOTHER surgery to put another one in.
Talking about sending him home with IV antibiotics which is fine with me. I can deal with that.
Did get to go home last night....had to check on the son. He just spent 5 days inpatient for an abscess that developed in his neck after his thyroid cancer surgery. They opened him up a bt and now has daily dressing changes. My 22 year old daughter who thinks everything is yucky (changing a dirty diaper on her own kid about sends her over the edge) actually stepped up and is doing the change with no whining....amazed at that. Going to make her a nurse yet. smile

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: Roller Coaster Ride - No kidding

Good for you on standing your ground.

It's amazing the strength you draw on - sounds like you daughter is discovering that too.

Clare

In the stars now . . . .

Re: Roller Coaster Ride - No kidding

kvolland....I made sure to have a bottle of CIPRO on hand - post resection  and beyond- and would start the antibiotic at the first sign of an infection.  Also I would take my husband's temperature twice per day; drove him crazy, but it made me feel better and proved to be the right thing to do.  Several times we were able to catch something brewing before it had a chance to get out of hand.
Hoping for your son’s abscess to be behind him soon and for your daughter to receive the kudos she deserves.  Sure was worth a chuckle on this end.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Roller Coaster Ride - No kidding

Well, we finally have a plan. I convinced them NOT to pull the port out and we are going to due two weeks of IV antibiotics through it and hopefully that will kill it IF it's in the Port or where ever it is in the body. It will put off chemo a week and I am not sure that the docs are all convinced it's the right decision but it was given to us as an option.

marions - I tried getting them to just give us some antibiotics to have on hand but they aren't at that point yet. They want to try to find the source and I suspect that he may have a small abscess in his belly from the original surgery. We had issues with the incision and a deep probably 7cm pocket that opened up in the middle of the incision. I just suspect that its a small something that they aren't seeing on the CT scans. Just my hunch from years of nursing. Besides if they pull it we have to have another surgery to put another one in....I don't want that. And I am driving him nuts with the temps, blood pressures and all that. He's getting good and checking himself.

And I am so proud of my daughter for stepping up. This has been pretty hard on her and I have had to ask her to do things she not used to....along with the stress of two cancer and trying to raise her son.

Home tomorrow though! WooHoo and maybe back to work on Monday...for me. I can hope.

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: Roller Coaster Ride - No kidding

Thanks for the update and I so hope you can go to work Monday, enough of this playing around! Some playing, yes? I totally agree with you about something opening up from the surgery. Teddy had some pockets from his Whipple and they do take time to heal. Try to rest up over the weekend, you certainly have had enough this week! Sending my best to all of you!

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.

22 (edited by marions Mon, 19 Aug 2013 21:07:49)

Re: Roller Coaster Ride - No kidding

kvolland....I retrieved a posting with possible similiarities to your husband's situation:  Here it is:
" My husband continues to be cancer free. Unfortunately he has continued to have many complications from the surgery that got rid of the cancer. He developed multiple abscesses in his liver and then a benign stricture of the bile duct which required a biliary drain. He still has the drain (3 months now) and has had many infections which required severals rounds of iv antibiotics."
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Roller Coaster Ride - No kidding

marions
I have a feeling that is the way things are going to go. They say there is nothing wrong with the liver right now (Liver function is better now that presurgery) and they don't see anything on it....yet, because I know they can't see it all. But I know they are already worrying about the stricture and wanted to put a stent in with ERCP last time we were in. That did not come up this time...mostly worried about the port. Just want to get to doing chemo but I suspect infection will be an issue.

And he gets to go home today.....It's his 50th Birthday today....what a way to celebrate it....coming home from the hospital.

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: Roller Coaster Ride - No kidding

I just want to wish your hubby a Happy Birthday and his biggest gift is probably to come home. Hope you have an enjoyable weekend. Try to take one day at a time to get through this because as you see thinking too far ahead things come up and changes take place. By taking each day you can concentrate on the here and now. HAPPY BIRTHDAY!

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: Roller Coaster Ride - No kidding

kvolland....Happy, happy Birthday.  Given the circumstances, celebrating at home beats spending this spcial day in the hospital. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER