The new normal

[debkor]

I've been trying to write but It's difficult. Most of the time when I sit down I pass out.  On Jan 11th my hubby found out he had stage 4 lung cancer that spread to his brain. He was dizzy and sick to his stomach. Thought he had the flu because the rest of the family had it a week before. He worked and actually felt better then lying in bed. Then one morning he couldn't stand up he was so dizzy. An ambulance arrived and the rest is our worst nightmare ever imagined. 

After the testing they were going to do brain surgery the next day. In between (my falling apart) my older son grabbed me and said..listen you're strong..you can't do this.  I stopped. I guess I went on (robot mode).  I can't allow emotions to take over.

My children were strong. So I thought.

The hospital was an hour from my house. My daughter lived 10 mins from it. I refused to stay at her house. I used my dogs as an excuse to go home (even to myself). My friends were going to take my dogs to their house but I refused. When I came home I cleaned and did laundry. Sometimes this was at 1am. I'd finish and leave at 3am to head back to the hospital. I had to have my house tidy when I would walk back in. I don't know why...possibly... maybe to burn energy, not shut down, or I don't know ...come to terms with the diagnosis.  I have. 

The brain surgery went well. They removed the tumor.  After surgery they wanted me in recovery room immediately. My hubby was tied at his hands and trying to fight everyone. He was confused and didn't know where he was or that he even had surgery.  I got in bed with him and told him to trust me. He had brain surgery. He was in the hospital and to let them take care of him. He calmed down. He slept and again I had the need to go home for a few hours. It was the only place I could process things.

The next day he was up. He ate. He felt good. Then they stopped him from eating or drinking anything. His swallow was off. Uggghhh!  He couldn't pass a swallow test.

Then shit hit the fan.

The night before his surgery I did a general power of attorney right in the ICU.

On his chart it was stated that I was to be contacted also.  I made that clear. Although he knew what was going on and fully aware of everything in his memory (it would be recalled spotty).

He was moved down to Neuro science floor 3 days later.  A tube was placed for feeding through his nose. My hubby nor I could get an answer why he had a tube. We got this..ENT is looking into it. ENT is not the ones in charge it's the Neurosurgeon. Ask speech therapy. So another words (the team)in hospital didn't communicate with each other. I had to change his sheets. It took them 8 days before they gave him a shower. He would be at a 9 of pain and an hour of ringing for a nurse. He could only whisper. He had to text me at home. I would walk in or my daughter and their attitude was 'as if' whatever!  Still 11 days later...no phone call from 3 different doctors that were suppose to call me. No answer about his swallow (or why). A new young nurse said ,, oh it was from the tube when they intubation him. Another said..maybe his brain. Then the Oncologist (I don't know what was up with him) made it seem that he had more then 2 tumors the way he explained it. Then was annoyed when he had to clarify. It was apparent he didn't want to be bothered. So now I'm feeling defeated and wanting to go to my safe place if I give up!!!!  That's not me though. Anger took over. I was sooooo angry that I didn't even have time nor my family to truly process our emotions because we were constantly in a battle with staff at the hospital and his care.

The next day when I walked in my hubby told them they delivered the diagnosis and he was alone. It was so sad. I was so upset. And again I felt defeated with communications of family and staff. The oncologist walked in when I was there. I had given up, yet, I said something about the way he was treated and our family. I told him how terrible it was that he just dropped the diagnosis on him alone. How sad. He said, you weren't here. I said, you have my number. I should have been contacted. It was on his charts. He said, He's the patient. I said, it's wrong and cruel how you did it. The problem with your team is YOU DON'T LISTEN!!!  He can't process how you think he can. I get you have been a Dr. for a long time and you get caught up in being a Dr but he and my family do not see him as a cancer or a brain. He's a father and a husband and a family member. He said, I'm a very good Dr..  I said, I'm not questioning that but you need to listen. I hope this never happens to any of your other patients or family members. Then he turned to his lap top and was talking about his treatment. He then stopped and looked at me. He sincerely apologized and threw his arms around me.  He said how sorry he was. He wanted to be his oncologist if we would accept him. He was so very human after all.  My hubby cane closer to home for treatment. It would be to hard on him with the travel. The oncologist in the hospital did a referral in my town. He set it up and they called me for an appt..  When we arrived there I wound up knowing one of the nurses. She asked me "Who did we know" that we were able to get an appt with the new oncologist in my area.  He was not taking any patients anymore. It was the oncologist in the hospital. He was so very human and was so very compassionate.  He listened.

Now the rest...worst nightmare ....I had to go over staff heads.  11 days after surgery and doing formal complaints....They told me left vocal cord paralysis due to intubation. It's a risk. It happened.

A nurse told me ..blow the roof off the hospital.
A peg tube was now placed into his stomach.
Another nurse told me she was uncomfortable with starting feeding because the Dr..couldn't be reached and he hadn't eaten for 3 days. He was starving. She pulled another Dr..
They told me he would be in the hospital for a while. Then they released him 3 days later.
Before they did I questioned them. Is this a safe discharge?  I didn't feel it was a safe discharge. Again I repeated, Is this a safe discharge?  I am not a professional. They said..All you have to do is open the can and pour it in.  I told them...I don't have to do anything..he's the patient ..talk to him about it.. Is this a safe discharge? Now of course I would take care of him but I gave back to them what they gave to us.

This is not my first rodeo with a cancer patient. I took care of my mom and my best friend right now is battling breast cancer and now my hubby. I became a little sometimes a lot (PTSD).  My hands shook, I hyperventilated, because of constantly being on the phone taking care of business and trying to balance responsibility at home.

Thank goodness for meditation and breathing deep. I could calm down.

So they release him on a Monday. On Friday he's puking. We go to our local hospital. They hydrate him. Give him Zofran. Do X-rays of lung and stomach. Some fluid in lung. And he I find out he hasn't had a bowl movement in the 2 1/2 weeks he was in the other hospital. Now I'm livid. We go home. As soon as we walk in the door he's puking. I was up to 4am. I wound up falling asleep on the couch. I woke up at 7am. I asked are you ok. He was not. Called an ambulance. He aspirated.

He also has weakness in his right had and his arm has some pain. I noticed he was dragging his left leg a but also the night before in the ER room. So when the ambulance arrived in the 2nd visit to hospital I told them the whole story about the other stay at the hospital and that he had 2 seperate issues going on. He also needed a cat scan on his brain. They were wonderful at my local hospital and when I asked them straight out...Would you release your patient without a bowl movement for 2 1/2 weeks? I expected they would not answer (I was just blowing off steam) but they did. Dr. said No. The lung specialist started to explain things I already knew and then ..I know you know this already and I am not defending the other hospital.

So let's move on. Sorry this is so long...
Last week we return to the brain surgeon.  I think I'm more frustrated then in the beginning. I talked about his treatment in the hospital. I talked about the head nurse that finally said..I was right. He was treated poorly and our family. That they lack communication with their own team. That they gave no Capt. of their ship. It's good I brought this up because now they can have meetings and make things better (REALLY)!! Then she read me the report about the left vocal cord paralysis. The surgeon said wide eyed and shocked ..Who told you that???  That's not true. Your head nurse. Then said, I don't know, maybe, maybe it was I was in there, maybe we will never know. Then asked if he was still on the steriods. I said  yes. Then said, he can't stay on them. They can have very bad side effects. Um, you prescribed them. Should I stop them.  She wouldn't say yes or no. She told me the oncologist can decide that. I asked about his hand, arm and leg. She replied, it's not from the surgery maybe it's mets to the bone. It is not. He just had a bone scan.
He has been under the Neuro team this whole time because of his swallow. She also asked if he had someone working with him up here!!!  OH WTF!! He was still in your care!!!
 
So pretty much ..he had a feeding tube because ..according to them we may never know
He is post surgery ...numbness and loss of strength in right arm and hand..but we don't know why..He did not have a safe discharge plan. 
And It's sooooo frustrating ....I think he needs an attorney.

But first things first.

He stared chemo. 3days in a row. Off three weeks. Did really well with it. 3 day he had the shit for the red blood cells. Oh boy that made him really sick. They say it's worse then chemo.

He's tired. He goes for little walks now and then. I let him rest but I also get him up. He has lost a lot of weight. He's 6ft 3 and down to 149 lbs. He was on jevity 1.2 that changed to 1.5. Can't tell how it's working yet. He just started the 1.5.

So my and his attitude is ..you have cancer but it don't have you. We don't go by statistics. Yes it is bad but it's not over till it's over. It will never be cured. They treat the symptoms. Hopefully his life will be longer. He has a good attitude. He's more bothered by the feeding tube.
We are working on it!!!

It is difficult trying to find a balance though with his feelings.  We may have it down now. 

It's okay though. This is the new normal. 

Stupid cancer is a real asshole but we are determined that it will not get the best of him (not now) No..We will fight you!!  We have plans. Fight On! 

[Hopalong]

Oh (((((((((((Deb))))))))))))).

I am so sorry for what you and he are going through--torture all around. You sound like a lioness whirling to face threats from multiple directions. Thank you for sharing this.

I am also stunned by your courage and clarity. You are the kind of advocate every human being needs in that kind of circumstance...and considering how much you CANNOT change about it all, you DID change huge amount. Your moment of truth with the oncologist must have been delivered not just with truthful outrage but also without venom. You actually maintained HIS (the doctor's) humanity by the way you talked to him...when his role had reduced it. You brought HIM back to life all the while advocating for your husband.

I'm awed. That humanity and maturity....well, that's what comes out of a person, their real measure, when tested like this.

This is an ordeal that is a chapter mark in your life, and whatever mark it leaves behind, I hope you will wear it with recognition of your own dignity and beauty. Right in the middle of this painful, messy journey.

What a lucky man your husband is.

Love and gentle wishes for comfort and rest for you both,
Hops

[BonesMS]

I've been trying to write but It's difficult. Most of the time when I sit down I pass out.  On Jan 11th my hubby found out he had stage 4 lung cancer that spread to his brain. He was dizzy and sick to his stomach. Thought he had the flu because the rest of the family had it a week before. He worked and actually felt better then lying in bed. Then one morning he couldn't stand up he was so dizzy. An ambulance arrived and the rest is our worst nightmare ever imagined. 

After the testing they were going to do brain surgery the next day. In between (my falling apart) my older son grabbed me and said..listen you're strong..you can't do this.  I stopped. I guess I went on (robot mode).  I can't allow emotions to take over.

My children were strong. So I thought.

The hospital was an hour from my house. My daughter lived 10 mins from it. I refused to stay at her house. I used my dogs as an excuse to go home (even to myself). My friends were going to take my dogs to their house but I refused. When I came home I cleaned and did laundry. Sometimes this was at 1am. I'd finish and leave at 3am to head back to the hospital. I had to have my house tidy when I would walk back in. I don't know why...possibly... maybe to burn energy, not shut down, or I don't know ...come to terms with the diagnosis.  I have. 

The brain surgery went well. They removed the tumor.  After surgery they wanted me in recovery room immediately. My hubby was tied at his hands and trying to fight everyone. He was confused and didn't know where he was or that he even had surgery.  I got in bed with him and told him to trust me. He had brain surgery. He was in the hospital and to let them take care of him. He calmed down. He slept and again I had the need to go home for a few hours. It was the only place I could process things.

The next day he was up. He ate. He felt good. Then they stopped him from eating or drinking anything. His swallow was off. Uggghhh!  He couldn't pass a swallow test.

Then shit hit the fan.

The night before his surgery I did a general power of attorney right in the ICU.

On his chart it was stated that I was to be contacted also.  I made that clear. Although he knew what was going on and fully aware of everything in his memory (it would be recalled spotty).

He was moved down to Neuro science floor 3 days later.  A tube was placed for feeding through his nose. My hubby nor I could get an answer why he had a tube. We got this..ENT is looking into it. ENT is not the ones in charge it's the Neurosurgeon. Ask speech therapy. So another words (the team)in hospital didn't communicate with each other. I had to change his sheets. It took them 8 days before they gave him a shower. He would be at a 9 of pain and an hour of ringing for a nurse. He could only whisper. He had to text me at home. I would walk in or my daughter and their attitude was 'as if' whatever!  Still 11 days later...no phone call from 3 different doctors that were suppose to call me. No answer about his swallow (or why). A new young nurse said ,, oh it was from the tube when they intubation him. Another said..maybe his brain. Then the Oncologist (I don't know what was up with him) made it seem that he had more then 2 tumors the way he explained it. Then was annoyed when he had to clarify. It was apparent he didn't want to be bothered. So now I'm feeling defeated and wanting to go to my safe place if I give up!!!!  That's not me though. Anger took over. I was sooooo angry that I didn't even have time nor my family to truly process our emotions because we were constantly in a battle with staff at the hospital and his care.

The next day when I walked in my hubby told them they delivered the diagnosis and he was alone. It was so sad. I was so upset. And again I felt defeated with communications of family and staff. The oncologist walked in when I was there. I had given up, yet, I said something about the way he was treated and our family. I told him how terrible it was that he just dropped the diagnosis on him alone. How sad. He said, you weren't here. I said, you have my number. I should have been contacted. It was on his charts. He said, He's the patient. I said, it's wrong and cruel how you did it. The problem with your team is YOU DON'T LISTEN!!!  He can't process how you think he can. I get you have been a Dr. for a long time and you get caught up in being a Dr but he and my family do not see him as a cancer or a brain. He's a father and a husband and a family member. He said, I'm a very good Dr..  I said, I'm not questioning that but you need to listen. I hope this never happens to any of your other patients or family members. Then he turned to his lap top and was talking about his treatment. He then stopped and looked at me. He sincerely apologized and threw his arms around me.  He said how sorry he was. He wanted to be his oncologist if we would accept him. He was so very human after all.  My hubby cane closer to home for treatment. It would be to hard on him with the travel. The oncologist in the hospital did a referral in my town. He set it up and they called me for an appt..  When we arrived there I wound up knowing one of the nurses. She asked me "Who did we know" that we were able to get an appt with the new oncologist in my area.  He was not taking any patients anymore. It was the oncologist in the hospital. He was so very human and was so very compassionate.  He listened.

Now the rest...worst nightmare ....I had to go over staff heads.  11 days after surgery and doing formal complaints....They told me left vocal cord paralysis due to intubation. It's a risk. It happened.

A nurse told me ..blow the roof off the hospital.
A peg tube was now placed into his stomach.
Another nurse told me she was uncomfortable with starting feeding because the Dr..couldn't be reached and he hadn't eaten for 3 days. He was starving. She pulled another Dr..
They told me he would be in the hospital for a while. Then they released him 3 days later.
Before they did I questioned them. Is this a safe discharge?  I didn't feel it was a safe discharge. Again I repeated, Is this a safe discharge?  I am not a professional. They said..All you have to do is open the can and pour it in.  I told them...I don't have to do anything..he's the patient ..talk to him about it.. Is this a safe discharge? Now of course I would take care of him but I gave back to them what they gave to us.

This is not my first rodeo with a cancer patient. I took care of my mom and my best friend right now is battling breast cancer and now my hubby. I became a little sometimes a lot (PTSD).  My hands shook, I hyperventilated, because of constantly being on the phone taking care of business and trying to balance responsibility at home.

Thank goodness for meditation and breathing deep. I could calm down.

So they release him on a Monday. On Friday he's puking. We go to our local hospital. They hydrate him. Give him Zofran. Do X-rays of lung and stomach. Some fluid in lung. And he I find out he hasn't had a bowl movement in the 2 1/2 weeks he was in the other hospital. Now I'm livid. We go home. As soon as we walk in the door he's puking. I was up to 4am. I wound up falling asleep on the couch. I woke up at 7am. I asked are you ok. He was not. Called an ambulance. He aspirated.

He also has weakness in his right had and his arm has some pain. I noticed he was dragging his left leg a but also the night before in the ER room. So when the ambulance arrived in the 2nd visit to hospital I told them the whole story about the other stay at the hospital and that he had 2 seperate issues going on. He also needed a cat scan on his brain. They were wonderful at my local hospital and when I asked them straight out...Would you release your patient without a bowl movement for 2 1/2 weeks? I expected they would not answer (I was just blowing off steam) but they did. Dr. said No. The lung specialist started to explain things I already knew and then ..I know you know this already and I am not defending the other hospital.

So let's move on. Sorry this is so long...
Last week we return to the brain surgeon.  I think I'm more frustrated then in the beginning. I talked about his treatment in the hospital. I talked about the head nurse that finally said..I was right. He was treated poorly and our family. That they lack communication with their own team. That they gave no Capt. of their ship. It's good I brought this up because now they can have meetings and make things better (REALLY)!! Then she read me the report about the left vocal cord paralysis. The surgeon said wide eyed and shocked ..Who told you that???  That's not true. Your head nurse. Then said, I don't know, maybe, maybe it was I was in there, maybe we will never know. Then asked if he was still on the steriods. I said  yes. Then said, he can't stay on them. They can have very bad side effects. Um, you prescribed them. Should I stop them.  She wouldn't say yes or no. She told me the oncologist can decide that. I asked about his hand, arm and leg. She replied, it's not from the surgery maybe it's mets to the bone. It is not. He just had a bone scan.
He has been under the Neuro team this whole time because of his swallow. She also asked if he had someone working with him up here!!!  OH WTF!! He was still in your care!!!
 
So pretty much ..he had a feeding tube because ..according to them we may never know
He is post surgery ...numbness and loss of strength in right arm and hand..but we don't know why..He did not have a safe discharge plan. 
And It's sooooo frustrating ....I think he needs an attorney.

But first things first.

He stared chemo. 3days in a row. Off three weeks. Did really well with it. 3 day he had the shit for the red blood cells. Oh boy that made him really sick. They say it's worse then chemo.

He's tired. He goes for little walks now and then. I let him rest but I also get him up. He has lost a lot of weight. He's 6ft 3 and down to 149 lbs. He was on jevity 1.2 that changed to 1.5. Can't tell how it's working yet. He just started the 1.5.

So my and his attitude is ..you have cancer but it don't have you. We don't go by statistics. Yes it is bad but it's not over till it's over. It will never be cured. They treat the symptoms. Hopefully his life will be longer. He has a good attitude. He's more bothered by the feeding tube.
We are working on it!!!

It is difficult trying to find a balance though with his feelings.  We may have it down now. 

It's okay though. This is the new normal. 

Stupid cancer is a real asshole but we are determined that it will not get the best of him (not now) No..We will fight you!!  We have plans. Fight On! 

((((((((((((((((((((((((((((((Deb)))))))))))))))))))))))))))))))))))))))))))))))

[sKePTiKal]

Wow... can I relate to almost ALL of that Deb. Pretty much what I experienced of medical care, too. Things did get better at our local hospital, but the delays early on, the denial of food early on, contributed to pushing Mike's body past the tipping point. Would've been damn nice if someone could've just SAID that so there were no false hopes and we could make the best use of our time and focus on his COMFORT, not pretending that this or that would make him better. But I know you know that already.

The docs can't just come out and say - we don't know how long, but he's not going to make it. They have seen miracles happen. They literally don't know. The only one who would be honest with me about the prognosis was a retired AF flight surgeon, who worked ER after getting out of the services... and then retired again. He's an online friend, but it was precisely because he could/would be absolutely honest with me - right down to the yucky details - that I was able to accept our "new normal" and deal with it.

It's kinda weird, that all the SOP is to jump to worst case scenario possible diagnosis and order all the big invasive tests... but when it comes to the reality of the situation: what are the chances of a full recovery? what are the chances of death? And instructions as to what to call in the cavalry about, or what is the most important care & treatment to maintain? Well, they can't do that at all. If it's not surgery, a test or a Rx - they have no idea what they're doing. Dr. P was the only one I found who would actually listen to me, corral and be the liason with all the other docs, and try to help me make informed decisions. And while she wouldn't come out and say the D-word, it was pretty clear from her demeanor that she knew the odds - but was trying to protect me. That is the most wrong-headed part of this whole experience for me. And I felt for Mike, too. I know everyone's different... but after I've communicated my wish to face this head on... why insist that I can't?

Couple things I learned right quick:

The first time I got up at 4 am to change him (we used 2-way radios as a call button) - I couldn't. I literally didn't have the strength and didn't know what I was doing. This was after his last hospitalization and the transfusion; swallow diagnosis and taking him off all oral inputs. I busted out in tears and ran for Mike's D who was there with me. Trauma nurse. She kept showing me, over & over, until I got it in my head. I felt so helpless & useless and the only thing I wanted to do was take care of him. Talk about PTSD/OCD... I grabbed paper & drafting stuff and started drawing a chart to work up on the computer for his med schedule just to calm down and convince myself I could still do other things. It's OK to not know this kind of stuff. You can learn. But you DO have LIMITATIONS and need care too. JUST as much (but different kind) than your hubby does.

Second, and MOST IMPORTANT: navigating the home health services was my worst nightmare. If you think communication is bad IN the hospital, wait until the hospital tries to coordinate with that level of providers. There were serious delays/mixups with evaluations simply because people called me; said they were ordered to come do x, y, & z... and oh yeah, provide respite care. Well, I'd already had a night nurse for 2 weeks that I called and talked to and was working out really well. When I said I didn't need the nurse -- those bozos cancelled everything; TWICE. Even after I sicc'd his hospital case manager on them to figure out what was going on. The person I talked to initially couldn't even adequately explain who they were, why they were calling, which doc ordered what... and what their role and purpose was. I guess no one ever asked that question before. A month & half LATER, we finally sorted things out.

Now, my night nurses came highly recommended by the cancer team and hospice. This woman has a great reputation and when it was just the CNA here, there were lots & lots of texts & phone calls back & forth and CK was fabulous with Mike, when she was here herself. She also took care of me - asking if I'd eaten yet, did I need to go out for something (I bought out all the depends in Mike's size on the OBX, within a week) and made me go to bed. She had to wake me up a couple of times, too - I was that tired.

You will only have enough depends and bed pads for the first 24 hrs after you get them home.

You need 3 sets of sheets for the hospital bed; use the speed wash setting -- because you will have one washing, one drying while the last one is on the bed.

It's the speech therapist that is the expert in swallow function; even giving Mike ice chips was bending the rules - but he begged for a glass of water all day & all night long. The thrush he had never got knocked down. I finally gave in, and gave him a shot-glass worth in a small cup and made him sit straight up so he wouldn't aspirate it. I believe he knew that and was taking his chances. He literally had no other pleasure, except his bath and massage.
----------------------------------------

If your hubby is already doing chemo, there is reason to hope that his body hadn't gone past the point of recovering like Mike's had. Mike didn't qualify for any of the available treatments; mostly because of the weight loss. When a patient crosses that 20% loss in a short amount of time it becomes a disease in it's own right (look up cahexia). And I'm convinced after seeing it in Mike & his mom... that there is a neuro component, probably do to instability in hormones. Both complained food didn't taste right; only wanted fruit; and had almost no appetite at all. I watched hubs forget to drink enough water; then argue with me about the amount he'd had. PT is real important; keep him moving at least twice a day - move than that if he can tolerate it. Just to get out of bed and into a chair can be a huge effort.

Looking back, he argued with me over how long he'd had temperature spikes, night sweats, and how long he'd "nap" during the day, right in front of the doc. That was almost the very FIRST symptom.

-------------------------------------

That's a lot about my experience. You probably already know all that. But I hope there's something there that helps. You do need to get out of the house, talk about something OTHER than this, and pamper yourself a little. You're taking on an opponent that almost never loses. It's usually a long battle. You might not be able to fend off the emotional stuff when you're tired; music seemed to be my weakness - songs that meant something to us. There's nothing in your thoughts or feelings right now, that are unusual or odd in this situation. DO ask for help and if you just need to babble to relieve some of the tension... I'll keep an eye out for your posts. PM me, if you'd rather. I didn't want anyone around; didn't want to look incompetent or feel helpless or emotionally lose it... but it was always there and would sneak up on me a lot.

Still does. And I feel for you and what you're going through. It's like a crucible for me. Forging and tempering steel... and if one isn't careful, instead of strengthening the steel, it becomes brittle. You almost HAVE to feel your way through it, even when your "manager-mind" is multi-tasking and staying on top of the details. Otherwise that pressure builds up inside. Don't know how you're experiencing it... but I'm willing to listen, if you want to tell me.

Mega-hugs Deb. And the libation of your choice as we build up the Amazon fire again.

[lighter]

I'm so so sorry, (((Deb))).

When my father had brain surgery almost 20 years ago it was very similar to what happened to you guys. I think nursing staff tends to be very hands off when family is there to do their jobs for them.  Unfortunately, brain surgery recovery requires more than family can give, IME.  Dad lost the ability to swallow and the nurses were still bringing regular meals he couldn't eat.  No one listened when I told them the food was staying on the roof of his mouth.... he wasn't getting anything down. 

No one listened when I pointed out his drastic change in mood.... he wanted to kill himself, and I was sitting on his chest, keeping him from finding a way to kill himself.  Doctors got mad when I demanded attention.  They threatened us with even less care.... threatened to tie him to the bed instead of consider medical intervention/causes.  They wanted to release Dad to rehab when his brain was swelling, and it ended up with his having emergency surgery to put in a shunt.

That was even more disturbing, bc I saw him go by on a gurney in a flurry of activity on my way to his room without knowing where he was going... I'd been telling them there was a problem for days.  They had to wait till it was an emergency to deal with it?
Yup. 

All the while they;'d been telling us his closed eye would open again... just some nerve irritation.  One side of his body was paralyzed.... they thought that would come back too.  Come to find out he'd had a stroke on the table and everyone knew but us till 6 months down the road, and the surgeon said it like we were morons for not knowing.  Hard to know something when everyone is lying about it, kwim?

We had to deal with the feeding tube.  There was fluid spouting 5 feet into the air, bc no one showed me how to handle it.  Dad wanted food, and we had to wrestle it from him till he did the rehab to strengthen his ability to swallow again.

A nightmare, Deb.  Your ability to cope must come and go, and I'd want to be at home every chance, like you, trying to feel safe, and normal, and somehow find some equilibrium to carry me through. 

I want to say that Mom's hospital stay at a Cancer Center was much better.  Dad was at a teaching hospital, not sure if that was the difference.  The nursing staff was great for Mom.  The doctors were present, and competent.... respectful, and responsive. 

I'm praying the next phase of your dh's treatment goes more smoothly, with the best possible outcome.

(((Deb and family)))

We're here for you.

Lighter

[Twoapenny]

Thinking of you and your family, Deb, at such a difficult time xx

[sKePTiKal]

A nightmare, Deb.  Your ability to cope must come and go, and I'd want to be at home every chance, like you, trying to feel safe, and normal, and somehow find some equilibrium to carry me through.

Yep; Lighter boiled down what I was babbling around, trying to spit out. I kept trying to find a "normal" routine... in spite of knowing that any minute there could be another change - or demand from the docs - that was just beyond my or Mike's ability to comply with because we were so exhausted. It got to where to get him to another last-ditch treatment sounded like it would do both of us in... and no one would or could speak in terms of probability of success/improvement... so let's just go through surgery one more time, because it's all we can think of to do.

A patient's expectation, is that going through a painful or intrustive medical process or enduring the side-effects of certain drugs is going to be worth it, due to relief of the underlying issue. That there is recovery at the end of the long process. People will put up with and go through a lot if there is a belief that all will be well in the end. So, it makes no sense to someone like me to sell those processes & Rx's right along with a false hope, when the odds - in all honesty - aren't that good. But if the odds AREN'T good, and people are being honest and truthful and forthcoming with information... if there's any survival instinct or will to live in a person... they can (and often do) overcome the odds.

These days, that information seems to not be allowed to the patient or their family - HIPAA you know. I had a cancer doc come at me with both feet as if a) I had no right to speak or ask questions and b) I couldn't possibly understand unless he put it in 5 yr old terms. LOL... I think he still had hair on his head when I was done with him. It was like Mike was his prisoner and I no standing whatsoever to even be interested in his treatment, prognosis or care.

[Dr. Richard Grossman]

Hi Debkor,

I just wanted to say that you, your husband, and your children are in my thoughts…

Richard

[debkor]

Thanks Hops, You're a lovely person and I love how you write.

Thank you Dr. G

Thanks Bones

TT Thank you and I live the verse!! Wrote it down

Amber and Lighter

I experienced the screw ups with communications on VNA's and Therapy. Oh they all called and they were all coming BUT it would have been for coffee and donuts with me ....hubby was in the hospital!!
Geesh!

When he came out...3 weeks later they called ...Do you need services? 
Nope.

The oncologist (now) is referring fir a speech therapist.
Everything else I'm doing and I found a good balance.

My hubby can take care of himself. He walks and can shower. He can do his own feed too.
Sometimes he very tired. I do a lot of them.

According to him. He's FINE!!  Everything is FINE!

Having cancer, FINE!  He'll beat it

That's all he knows about the cancer. He has no interest in what kind, statics (which) we don't put in stone, and that it will show up again. It's aggressive. When and where it shows up, don't know.
I'm glad it doesn't bother him.

Depression :  At times. About: The peg tube. He wants to eat.
                                      He's bored
                                      He wants to work

I go out but not for a day. He is not Fine!  Not now and not yet

Things go through my mind and Yes it includes "Worse Case".  I have to address it.
Will there be a time "Hospice"? Possibly.
But not today

One day at a time.

He has no pain. The only meds he is on is for acid reflux and a steroid.  His cognitive thinking?  Seems like struggles at times with some things.

I get my dips/even take a dive (started yesterday). I come back up for air though and recover. That I think is normal.
There is a change. He looks so weak. So thin. So tired. So broken. THAT BOTHERS ME!!  That upsets me so much. 

He was loosing sometimes 4lbs in 4 days. His formular was changed to higher calories.
He is at least maintaing weight now. Hopefully he will start gaining.

Guilt? I've had it when I went to buy him new pj pants and shirts. I bought my self 2 cases of Keurig coffee and really good ones. And on top of it I used his charge! 
Now normally I wouldn't give it a thought. Only under the circumstances I felt shellfish with thinking of my self.
He can't drink or eat. And he loves coffee.
But I'm drinking and enjoying the coffee, lol

Another time was when I stayed home one day from the hospital.  I could barely tie my shoes, I was exhausted. My family went so he was not alone.
I'm not super woman. My body let me know that.

There's not much more that can be done. He couldn't handle another surgery.
It seems to me that his treatment ..like in football (Is a Hail Mary).

He has small cell lung cancer (mets) to brain ...stage 4. 
85% are smokers. He's also a welder since 19 years old.

But there is laughter. And sometimes it just feels good to do whatever!! You want to Howl at the Moon!!  Do it!

BTW I forgot to tell you. The oncologist 1st one that  turned out to be so very human...Asked me if I liked to dance after he apologized. I was one sad hot mess. I said, I do. And next thing he took my hand was doing the tango. Then we did Greek dancing and ended with the hustle. I was laughing (the staffs) faces were priceless...as we danced by...laughing is so healing.

[lighter]

Ah, Deb....

The laughter can get you through.

We laughed and laughed with my Mom.... so much fun.  So many opportunities if we don't let negative, sad thoughts get in the way.  Well, that has to happen some of the time, but letting the laughter in is better, IME.

When we can, we should seize our moments, howl, and dance..... you're right.

Lighter

[sKePTiKal]

Deb, that dancing doc - who realized what he was doing in an instant - is worth his weight in gold. Don't hesitate to call him to consult or for a second opinion or just to talk.

I think your hubby sounds better than Mike was. Even though I cared for his Mom, we never had to deal with this level of home care; this level of dependence. Keep him up & moving as much as he wants to be or can. That will help build muscle, which is the reason for the protein food. If anything will reverse the weight loss - those 2 in combination will do it.

Right now, you need to have at least 1 day a week where you get the full 8 hours to schedule appts for you, get out & drive & crank the radio up with the windows down... take care of the have tos... buy flowers... and have lunch with friends, shop... that was my mistake. I didn't realize I needed that until I was already desperate for it. And sleep... oh my... I needed sleep. You just need to be able trust that someone else is in charge of his care for that 1 day a week, so you can unwind; stand down; relax a bit.

People kept asking if I needed anything. LOL... I really literally couldn't think of a thing. I couldn't; not even for myself. Except the one thing I apparently wasn't going to have. Mike's brother and my SIL took care of some long-put off things on the "honey-do" list; they cooked. So I didn't have to decide. Those things were the most helpful. I didn't have to worry about the gate latch; the tires on the truck; or shopping for something that Mike really liked. As it was, he only took one tiny bite of the swordfish. So I started another in the long list of lists... of things I could delegate to people, to do when they offered. That really worked to keep things from "piling on".

Mike tried to race his way to the end, before the docs could do anything else to him (I think). He was where he wanted to be, with who he wanted to be with, when it was time to hit the timeclock and go home. So, it was as GOOD as it possibly could be for him; from his view point.

[sKePTiKal]

Hey kiddo... I was thinking about you last night. How's it going? Everything on an even keel or have things taken another turn?

[debkor]

Hi Amber,

Another turn. Hubby is actually doing pretty well with the chemo treatments. The side effects are not to bad but bad enough (to vomit) at times. It's his swallow that's causing complications. It's still not working correctly and due to vomiting he can aspirate. And he did, again. Had a 4 day hospital stay and aspiration/pneumonia.

The problem is..some Dr's think its from his brain (the swallow) which means its permanent. 

That is what's depressing my hubby the most and many of times he has shared that is what will kill him and not the cancer. He's hungry everyday and looks forward to when he can pass a swallow test and eat again.

So that's where we are at right now.

How are you doing, girlfriend?

[lighter]

Hi Deb:


PT might be able to help your dh learn to swallow again.  My father did it after brain surgery that resulted in a stroke.

((((Deb and family)))

Lighter

[debkor]

Thanks light,
 
That's what we are hoping for. They are sending PT to our house.  I feel so bad when I cook at home and it smells the house up. It's torture on hubby. He understands though. Hopefully one day he can dig in.

Deb