We met with Linda's oncologist yesterday (Michael and I). It was a much better meeting than I had feared. 3 weeks ago the word was that Linda would probably not survive thye surgery because her blood pressure was too low. She survived that. A couple of days later it was "She won't be able to get back enough strength to go through chemo". She has surprised everyone with the rapid rate of recovery. Then it was "She will need surgery to get rid of as much cancer as possible, but even as well as she's doing, surgery is out of the question". Now, r\the onc says that in Europe they have reversed things and are doing surgery after chemo, instead of before, so if she deals with the chemo and continues gaining strength, that is a possibility. Bottom line, we've gone from talk of when to take her off life support and make her last weeks as comfy as possible to cautious optimism. As hard as she is fighting, she has to deserve some breaks. Thanks to all for continued prayers and support.
WOW, David. Seems like there's a light at the end of the tunnel. Hope is what we survive by, and it sure sounds like you all have it and there is a future. I guess, one day at a time, and prayers. Linda just seems like the type person that will never, ever just give up, so rejoice in this latest news. Like I said before, WOW. Amazing Grace.
Julieann
Linda is such a fighter! Im hoping she continues to do well. Hang in there David! Im sure this is very hard on you so please dont forget to take time to be kind to yourself thru all this. Wishing you both all the very best!
Always in your corner!
My niece is just coming back to Canada after 9 years in England. She was diagnosed with either inflammatory (bad) breast cancer, or locally advanced breast cancer. The europeans definitely do think chemo first is the way to go. She had two rounds of chemo before moving to Canada and Canada is staying with the same game plan. Once the chemo is done, they will do surgery, but the idea is that the surgery is then FAR less extreme and easier to tolerate. All good news for you!! Made my day.
Hugs
Donna
Awesome! Hugs to you both - tell her to keep fighting.
and I'll say some prayers!
Big hugs to you, David. I'm sorry I haven't been able to follow closely enough. Just know that you and Linda are always in my thoughts. We all want a happy ending, that's for sure. The both of you deserve nothing less.
xoxo,
Kerri
David:
Just wanted to let you know I am thinking of you and wish you a very Happy Father's Day.
Julieann
After steady improvement, Linda has had a couple of set backs. 1st, the dr. took her off of dilaudin for pain and switched her to methadone, which lasts longer. Her blood pressure dropped drastically and she was not digesting her food.. Took her off methadone and on Norco. Liver enzymes became elevated, though bp did improve. Off Norco and back to dilaudin. This morning she has a fever of 101 and we are waiting for blood test and x-ray results. This is really scary. I'm in way over my head and can't get straight answers from anyone. Michael is beside himself and ready to punch someone. I can't blame him. And we haven't even started on the cancer yet.
So sorry that this is happening. It is maddening that doctors change things to make them worse. My thoughts are with you and your family at this trying time.
So sorry to hear this latest news, David. Things looked like they were improving there for a while and now this. It's so unfair. Not getting straight answers from anyone can really stress you and Michael and I pray things improve. That's about all I can do, and will keep praying. So sorry.
Julieann
I've been thinking so much about you and Linda and hoping things would be progressing more hopefully. So sorry for the latest setback. Hope the blood test and x-ray results can get some clarification for you. Still praying for better days ahead.
Really sorry to hear this. Sounds like a lot of miscommunication.
Are you able to set up a daily meeting with Linda's Doctor/team. Where they can update you with progress, test results and the current plan and options. This also gives you and Michael a place to ask questions and ensure you understand the plan. The nurses involved in Linda's care should attend this daily meeting too.
Complicated health always involves 2 steps forward and 1 step backwards. However Family should never feel like you two are.
Thinking of the 3 of you,
Tammy
I think you need some clarification with the drs. And tell the to stop messing with her meds. They did that to my mom too, saying they were switching her to a common palliative care pain med. she had a bad reaction to it and for about 2 days they didn't listen when we told them it was the change of meds. They finally relented and gave her something different, suck! Hugs you two.
David, Im very sorry to hear about Lindas latest problems. If you have questions, ask the doctor or nurses. You need to understand what is going on so you can make proper decisions. If its too technical, ask them to explain it again. Dont be afraid to speak up if you are unsure about something. They work for you and Linda.
Im hoping you have the strength to persevere thru all of this. I know at times it must appear to be such a bleak future full of never ending medical hurdles. Be strong, we are in your corner.
(((HUGS)))
Linda's fever peaked at 102.8 yesterday morning but was brought under control with meds. Pulse was at 135 at time of highest fever, but dropped to the low 90's. She was feeling very low yesterday eve and said, via pen and paper, that she want's to go home. I feel so awful for her, I know she is scared and far from family. As for communication with med staff, here's an example. Nurse; We are taking her off the Norco because her liver enzymes are elevated."
Me; "What does that mean?"
Nurse; "It means they're higher".
Oh, thank you so much. We have not been to impressed with this place at all, from the beginning, but we were told by the docs that it was the only place closer than Sacramento for trach weaning. We need to get her back here or bite the gas price bullet and move her to Sac. Setting up a meeting with the pulmonologist is unbelievably difficult. Disgusted!
Oh my goodness, David - with answers like that nurse gave you, no wonder you are not impressed with the treatment and lack of clarification and proper answers to your questions! I'm so sorry this has been so rough on you and Linda. Wish I could be there so I could go yell at somebody! Keep bugging them for proper answers and get as many people involved to help you until you do! Do they by any chance have a patient advocate that can help you with information you need, or get a meeting going with the pulmonologist? You are such a great caregiver, David - but there are times when caregivers need a little help, too. Hope you and Linda get some relief soon from all this and that things improve.
We all feel for the both of you and that place does sound scary but you have been thru the war so dig down and continue to fight for her.
Spent 5 hours with Linda yesterday listening to her speak. R.T. put a cap on her trach so she was able to speak, albeit in a very raspy voice. I was afraid she would wear it out but it only got clearer over the time. Huge milestone.
It must have been very nice for you to be able to speak to Linda and hear her response. So glad for you.
Looks (and sounds) like things are looking up David.
Love to both you and Linda and hoping she continues to make progress like this
Gabriele
So-o-o-o-o glad for the upswing in progress! Hope the good days keep coming your way!
Linda is now in a rehab/snf in Chico. It's less than a mile from home. That's the good news. There are an unbelievable number of totally inept and uncari9ng people there.I was so angry last night that it was making me feel sick to my stomach. Around 1 am we finally got a nurse in there who actually had a clue what she was doing. Today has been somewhat better but this place is so understaffed that everyone is running around completely frazzled. Yesterday one rn actually started crying in Linda's room. Unbelievable. At least Linda keeps improving, in spite of it all.
Welcome my my lie from January to march - the place my dad was in was inept and negligent and yes - uncaring. So glad she is doing better. Be diligent.. You are her advocate, hugs!
Sounds like Linda has been making some good progress if she has been stepped up to a rehab center. Hope she continues to improve quickly so she can go home soon.
Great for Linda and I feel for you.
David:
So sorry about the rehab problems - more and more these days I hear things being bad in such facilities and also hospitals. Had a bed-confined friend who pushed nurse buzzer for someone to come and take her to bathroom, and she suffered without anyone replying most of the night - hours (in tears). Her husband started staying all night after that, so it's unfortunate you have to deal with those problems along with Linda's healing. Our thoughts and prayers are with you and hopefully she'll be able to go home sooner than two weeks.
Julieann
David,
have you visited other facilities? It might be worth transferring. My dad's facility was excellent but did not look that great on the internet - very important to visit in person.
Best wishes to you both.
Maria
It's good Linda is making progress and I'm so glad she has you to be her protector and buffer. You must have had an effect on "the help" since things seem better today but sorry it's been so rough on you, David. Maybe Linda won't have to be there too much longer? Maria's suggestion to find another facility might be something to think about, especially if one that 's not too far away.
Sorry to hear about the bad experiences in rehab. I know very well how it is having been in one for three months myself, back and forth to the hospital twice, the last was for 25 days, when they almost killed me from dehydration, had acute kidey failure, and c-diff I caught there. Being bed ridden from paralysis, I had to be lifted out if bed with a hoyer lift with two nurses, and that was only after two months stay and my return from the hospital. Prior to that, I was in a floor where patients don't leave on their own. I asked about rehab, showier, and aide laughted and said, baby, you dont get thst on this floor, do you see anyone walking around, and she was right, few visitors, and no patients out of their rooms, so there are differences in floors. A family representative has to have a presence there, otherwise the patient is ignored. If a health condition arises, which they are unqualified to handle, you can go hospital. I was surprised when I needed an IV, they could not even put one in, and called my family called 911.
After 3 1/2 days i9n the rehab facility Linda had to be taken to the er. Her blood pressure was 50/38, possibly because they increased the dosage on opiates to keep her quiet, (one nurse had complained that Linda kept pushing the call button every few minutes and the nurses couldn't get "their" work done. Turns out there was good reason for Linda's actions)She was extremely dehydrated, kidneys were beginning to fail and had a urinary tract infection. By this time, she was totally disoriented, bordering on delirious. She was admitted to the hospital and went back to ICU. She was anemic and needed 2 units of blood. I can not imagine how all this could happen in a medical facility where their are people who are supposed to keep an eye on such things. I went to get her belongings from rehab, which were not packed up as the nurse who had called me said they were, so I tossed everything into a bag and prepared to storm out of there. In the hall I encountered one of the nurses who had complained about how much of "His" time Linda was taking up. As I walked pass he said "Have a good day". Now folks, those who know me consi9der me to be a laid back, easy going kind of guy and mostly that's true BUT, there are lines you shouldn't cross and damn near killing my wife is a biggie. I stopped and said "I don't know if you people have ever had to deal with a pissed off Marine before but you have one now." He made the error of asking what I was mad about and I unloaded on him. They have not seen the last of me.
Good lord, David. At least she is out of there. Thoughts and prayers your way.
Maria
Im so sorry to hear of Linda's problems at a "care" facility! She is so lucky to have you in her corner!!! Give them heck, David!!!
I'm sorry David. Same thing happened to me, dehydrated, c-diff, acute kidney failure, and spent 21 days in the hospital due to lack of proper care, and basic IV. They even stole my iPod when I was being put in the ambulance. They were lucky I couldn't walk or of sound mind, but my brother gave it to them though. I have nothing kind to say of these places, although there are some good people, but are too few, and far in between.
Hang tough David, you are all she has protecting her from the mass of idiots "just trying to do their job". Has anyone told them what the hell their job is???
So, I got sidetracked before I finished my update. Linda is home now. She stayed 1 night in ICU and 3 nights in DCU and was discharged wed. Docs were talking about sending her to9 another facility to continue p.t. and o.t. but we said nope, she's coming home. One big headache has been that her ileostomy is retracted, leaving nothing for the ostomy bag to enclose so that it leaks after a short while and had to be changed frequently. I sat down with the director of nurses at the rehab place and explained that to her. She assured me that they were capable of handling the situation. Well, as it turned out, the staff had no idea how to change the bag and get a halfway decent fit, plus, they had to use supplies that had been ordered for another patient. That is why the nurses were upset that they had to spend so much of their precious work time with her, and yes, David, someone has told them what their job is. Me! Anyway, at the hospital we finally got a certified ostomy nurse to show us how it's done and the bag she put on lasted 3 days. A good thing because Michael and I would have had a hell of a time doing it the way all the other morons did. So, now she's home and much more comfortable and happier and Michael and I have a lot more confidence in our ability to deal with the ostomy bag. Whew, what a ridiculous road we had to follow to get here.
Glad that Linda is home now and being cared for by what sounds like 2 very capable and caring nurses
I hope she is now on the road to recovery.
Gabriele
Hate this facilities
glad you have them the what for and even happier she is home! Hugs!
Well, David - Looks like the very best "facility" is HOME! So glad Linda is home with you being cared for by people who know what they are doing and are doing it right! And the big plus is the Tender Loving Care that goes with it. Yay! for our side!
David, you & Michael are doing an amazing job of advocating for Linda. You shouldn't have to fight for decent care, but you are obviously up to the job when called. This is for you:
"I am a man of peace, but if war comes to my door it will find me home." -- Churchill
David,
I'm so sorry that Linda had to endure such terrible "care" at a care facility. Thank God she has you and Michael to watch out for her. I'm glad she is home and I'm sure she is much happier being at home. Wishing all of you the best!
David: You and Michael have so many members on this Forum cheering and praying for you in your treatment, care, and love for Linda, something good has to happen. Hopefully, she'll get better as the days go by and can handle whatever has to be done for her. She is one lucky lady to have you guys, and I'm so happy to see she is home. Home is where the Heart is, right? Keep us posted and continuous prayers for you all.
Julieann
Linda is now fully informed of her ovarian cancer. It went just as badly as I feared. She was very angry that we had withheld that info from her for as long as we did, an I can't blame her for that. She has come to the point where she says she understands the reasoning behind the decision but she doesn't like it and neither do I. There's nothing about i8t to like. I'm sure some forum members disagree with us on this. We had no idea her hospitalization would last 2 months, we were thinking more on the line of a few weeks so it seemed reasonable not to tell her until her immediate crises was over but, every time things seemed like they were improving there was another crises. So now she faces 6 mos of chemo every 3 weeks. I feel horrible and wish I knew whether we had done the right thing bu I guess there's no easy answer for that.
Oh my dear, dear David - Of course there was good and sound reasoning behind the decision to wait on the ovarian cancer issue. You could not have known how long the hospitalization would take. You have been one of the very best caregivers I've ever seen on these forums. Your love and concern and caring for Linda is something to be envied and admired. Please take heart and look for much better days ahead - That is what I am hoping and praying for you and for Linda. Please keep updating us.
Don't second guess yourself. You considered all the facts; had her utmost in your mind and you made the best decision you could. Being put in a caregivers position can sometimes lead to no win situations so you do what you think is best and move on to the next no win situation.
If she understands she'll eventually get over it - ultimately you made the right decision
Going to see Linda's oncologist this afternoon. This is one of those times when there really is no good news. It's either bad news or worse news. Hoping for merely bad. I know that sounds pessimistic but that's the way it was when I met with the onc. after my diagnosis and I really was relieved that it was "only" bad news. Plese continue to keep Linda in your thouts and prayers.
Linda, and you, are constantly in my prayers. I look for your posts and updates, so keep us posted and prayers for news that is hopeful.
Julieann
don't let their negativity be contagious. hugs.
Ditto what Cheryl said. Positivity is also contagious. Ongoing prayers going your way for more hopeful news.
Linda is scheduled for a port on fri and starting chemo next week, every 3 weeks for 6 tx. Onc was hopeful, said at this point her cancer is curable. Her pulmonologist had said it was treatable but not curable. Glad we took that with a grain of salt as he is not an oncologist.
Thanks for the update!
The news sounds like there is hope for a cure. Thats great news!!!
Thinking of you both and wishing you both well.
VERY glad to hear the news - best wishes to you and Linda.
Maria
Had to go help Linda in the shower half way thru last post. Anyway, the other news is that she got the PEG out today. Now we are waiting on the home health nurse, who should be here in about 15 mins. Thx to every one,
WONDERFUL NEWS, David. It jumped from super bad to super good, and I am so happy for you both. I'm sure Linda's whole outlook will brighten. Keep sending us this kind of news.
Julieann
Such GREAT news! So happy for you both!
Linda started chemo on tues. Took wat over the 4 hrs she was told. Hopefully future tx will go as planned, So far everything is ok with her. Next chemo in 3 weeks. Gonna be a long battle this time but, look out cancer, here she comes.
Toes and fingers crossed!
Yeah!!! She's strong! As she has you to help!
The ups and the downs. Linda was running a fever the other day so she couldn't do chemo this week. We see the onc. on tues and see what he has to say. Linda is really sleeping a lot and she vomited this morning. Very, very concerned about all of this.
David:
I'll pray for you and Linda tonight. Hopefully she's vomiting because of the earlier chemo she had. If she has a fever still, maybe take her to ER, but hopefully, you won't have to do that. I can hear the worry in your words.
Julieann
Ditto what Julieann said. Hope things are better by the time you get this. Maybe the fever means Linda's body is fighting off whatever is causing the fever? She is a fighter and a survivor! And sleeping a lot is a part of repairing the body and getting better.
She sounds like she has a nasty bug... Not surprising chemo can really cook your goose. Fingers crossed she kicks it soon and gets back on track.
If the fever is not gone, I would suggest going to the ER. Infections, which symptom is fever, can move quickly to septic shock, sepsis, organ failure, if not addressed. Good luck.
After a 9 day delay, Linda is scheduled for chemo #2 tomorrow. That is a relief as I was afraid the Onc would say that she's just not healthy enough to do it. Unfortunately that remains a possibility for the future tx.
That sounds like progress, David. Hope the chemo goes well tomorrow.
Hi David:
Praying for good results with Linda's chemo treatment today. Let us know how she does.
Julieann
Fill her up on protein shakes and healthy foods
The one thing I will say is that it is great to have a survivor as a care giver and I am of the opinion that this is one of the reasons why Linda is doing better than expected. Remember Doc's do not like to over promise and under deliver. Stay strong and keep up the fight. In my prayers.
Linda had her 2nd chemo (of 6) on Thursday and had a quiet weekend with very little nausea. We (Michael and I) seem to have hit on the right way to do the ostomy app (knock on wood) as it has lasted almost 48 hours now. Good thing too, as we are out of that particular style and medicare won't pay for more til thurs. We have some of another style that we haven't used yet and have no idea how well they'll work. Hope, Hope, Hope.
Good news David stay the course and fight the fight.
David,
Sounds like progress! You can also check with ostomy companies and get some "samples" for the future. When I was taking care of my other for 9 months they were very generous and made sure we had adequate supplies. Just a thought.
Ed
Stay strong!!!
and more power to Linda.
So glad for the quiet weekend and progress you all have had. Good for you and Michael and Linda!
ahere I am again. Been a while and sorry about that. Linda had chemo #3 today, delayed again for a week as she was in the hospital last week when it was scheduled. I had taken her to the e.r. last Monday sept 30, because she was very confused and dizzy. They felt she was having a reaction to the antibiotic Reglan, and changed her script and released her. Then on weds she really went in to a tail spin, she was dizzy, coul barely get off the bed and was beligerant and delirious. Called an ambulance to take her back to e.r. That was about 4 pm. they kept her in the e.r. til 4 am thurs, during which time she was hallucinating and just completely freaking out. She couldn't keep still and kept wanting to get up and then lie right back down. Turned out that her magnesium level was extremely low and that was causing her problem. She was admitted and stayed thur and fri nights. She was supposed to have had chemo on thurs. Rescheduled chemo for this wed but her blood count was down to 6.7 (11-14 is normal) so they gave her 2 units of blood on wed and 1 unit yesterday. So finally got chemo today. We don't know what caused the low blood count. I know that years ago when she had ulcers it got almost that low, but there's no sign of ulcers so we just don't know. Anyway, she has felt much better since receiving blood. Not sure how she manages the strength to continue fighting through all of this. Call her Wonder Woman.
David, how horrible! The medication reglan (Im pretty sure) is for nausea. As always wishing both you and Linda all the best with everything.
Sorry, you're right Christine. She's been on so many meds I can't keep them straight. She also had a bad reaction to cipro, which is an antibiotic.
I'm sorry to hear of the continued troubles, David. RBC last approximately 90-120 days, and die off continuously, and are continuously replaced, but chemo and radiation can compromise bone marrow production where RBC are made, so fewer are made available to pick up oxygen in the the lungs, Hemaglobin, in addition too, RBC being killed off by the body or by treatment faster than they can be replaced. They may go down again in several months, sooner, and process continues, and have had a number of transfusions, epogen, shots myself from treatment, and from a metabolic disorder to raise my Hemaglobin. Mine is never higher than 10.5, usually 9.5 or less, but anything under 7 is dangerously low. But even at 8, 9, if the person is in respiratory distress it can be life threatening, and may be give transfusions at that level or when the oncologist orders because anemia can cause one hypoxia to be chemo and radio resistant.
Reglan is for nause vomiting, GERD, but it's not a antibiotic.
Good luck.
Thanks Paul. That's more info than the infusion staff could give us. I know that Enloe is one of the top ranked hospitals but sometimes they do disappoint.
I'm glad it helped, bur may not be the sole reason, of course, other medication, factors may be involved. I was hospitalized 187 days, had blood tests several times a day, and always wondered if they could take less? I found out, not practiced yet, they can use an infant syringe to take less blood to those with low blood counts.
David I feel for the both of you and hope the chemo does the trick!
Linda is on a hiatus from chemo due to a cyst that formed right next to her stoma and required surgery. While that's healing she will have surgery next wed to revise the stoma, hopefully making it much easier to deal with. I really don't like the long delay for chemo bur getting the stoma under control is a big step. We've been having to change the bag 2 - 3 times a day and each change lasts from 1/12 to 2 1/2 hours. We're all getting quite exhausted. If they are able to do a good revision, each bag should last 4+ days. Keeping our hopes up.
Goodness, David - you would think the stoma would behave itself better. Best wishes to you both on healing and progress.
Maria
Good luck and hoping you guys get a break!!!
Linda's surgeries have healed well enough for her to be back on track with chemo. Hopefully we'll get through this without further delays. Meanwhile, it's still a constant struggle with her ostomy spplisnce. We just can't get one to stay on very long and none of the ostomy care nurses can help us. They're as puzzled as we are.
That's good news the surgeries healed well, David. I think there is discussion on "Inspire", part of Oley Foundation, who have ostomy bags, if that helps.
I've been delinquent in updating Linda's progress. The stoma revision went well and after a shaky start we have finally gotten to the point that the app stays on for several days instead of hours, taking a lot of stress off us all. She had chemo #5 with hopefully just 1 more to go, however her onc did say it is possible, after all the delay, that she may need 1 or 2 more. Sincerely hope not. Linda and I just got back from a Brighter Days presentation on skin care during chemo. Very informative and she got a bag of goodies, including some pretty expensive skin care products. Also there was an oral hygienist who specializes in oral care during tx. Told her about OCF so hopefully she'll check it out. She gave my a large bottle of Biotene mouthwash, thank you. Anyway, things are smoothing out around here and it's nice to get Linda out of the house now and then.
Glad to see that things are looking up for Linda. Best wishes with finishing the chemo!
A free bag of expensive goodies is also great for the soul
Love to you both.
Gabriele