I'm sorry that I haven't had a chance to post since Dennis' surgery, and I'm afraid that this will be short............it is so hard to find time to write when he needs me constantly, but I will be filling in the details in days to come. In short, we are finally home. After 25 days at Johns Hopkins, it is a relief.

Dennis found out just seconds before surgery on the 4th that he would lose his voicebox. We had hoped, along with the doctor, that clear margins would be possible and save his voice. This wasn't to be. He had to have a total larynectomy along with a glossectomy. His tongue was removed, and he is left with a permanent stoma, along with the inablility to speak.

He also suffered a stroke on the 20th that led to (hopefully) short-term weakness on his right side. So along with the inability to speak, he can no long write. There are problems with his understanding at times......no sense of time, or patience, and a loss of spelling and mathmatical skills....but will improve, if we are at all lucky. This makes it hard for him to cope, but he suffered no loss of memory, so that is a blessing in itself.

There is so much more I want and need to share, but his feeding pump just went off. I will try to come back tomorrow night. ( A whole nother story to tell about the PEGs....yes two....that failed!)

In the meantime, please know that all your prayers were felt in Baltimore. The doctors couldn't believe that I never left the hospital. (Thank you God for family) But, with the support we've had from his sister and husband, and knowing you guys were here for me, we are coping.

God Bless Us All
and Love,
Mandi

Wow Mandi, you certainly have had a rough road. Big hugs sent to you. I'm heading for Hopkins myself on the 4th to have my partial glossectomy and I'm getting more anxious as the times gets closer. But, what else can we do when faced with cancer? We either treat it or we let it kill us. I refuse to let it kill me, it's that simple!

I hope you're taking care of yourself also. I know you're a pro at this, I remember Dennis's first battle and reading your posts. Shame he has had to deal with it all over again, and to such a severe extent. I'm praying for you Mandi and for Dennis.

Get some sleep,
Minnie

Hi Minnie,

Ok, I give up....is there a cyber-god out there who can tell me why I can't send personal emails from the site?

Anyhow........I wanted you to know that I would love to come visit, if you are up to it, as I will be taking Dennis for follow-ups during your stay. Dennis is not much of a "talker", but I know how much it helps to have visitors from time to time. Just let me know, ok?

Hopkins is wonderful. I'm not sure if you had your original surgery there, but Dr. Califano and his team were great to us. Actually, I have appointments for Dennis in a few hours, and I should get busy.

For now........please know that I'm right there with you in spirit. Write me, and if there is anything....ANYTHING....I can possibly do for you during your stay, just let me know. (Big plus....I know of a great place for visitors to find food, and it won't cost an arm and a leg...ok, it is an experience in itself getting there, but security is on duty during the day! :-)

Love,
Mand

Hi Mandi, I read your post and wanted to let you know my thoughts and prayers are with you and Dennis....God Bless, Love, Carol

Hi Mandi,
I am so sorry to hear Dennis had to have a total laryngectony and lose his tongue also. I have had no tongue surgery so can still talk. Is there any chance in the future that he will have a TEP and be able to talk? I think some people still can speak after a total glossectomy. I will be out of the country until the end of October so will not be much help on trach issues until after that. Marliz and Tony, however, both recently had total laryngectomies so email them if you have questions. I'm certain they would be willing to help. You guys hang in there. Living with a trach is not all that hard once you get used to it. Here's to a speedy recovery. Please take care of yourself too.

Take care,
Eileen

Hi Mandi,

I wouldn't mind a visitor at all. I think Carol may try to come also. My last name is Ashworth and I'm sure they'll give you a room number with that information. My docs name is Dr. Koch and it's he and his team that will be performing all the work.

My mom, husband and daughters will all be in and out.........so feel free to come.

Love,
Minnie

Mandi,

Thinking of you and Dennis. I can only imagine the frustration of all of this!

Cancer is hard enough, but to endure what you are going through is something else. Our hearts and prayers are with you both.

Take care,
Diane

Dennis is back in the hospital, I'm sorry to say. To back up, his first PEG's balloon failed. When the nurse tried to use it the first time, the saline flush went into the abdomen and I've never seen my husband in so much pain. After a CT scan, it was determined that he needed abdominal reinsertion after washing out any bacteria that may have spilled into the abdominal cavity. This is the wound that he has been using a wound vac for because it reopened the day following surgery. This G/J tube also failed in the hospital (balloon deflation again) and a larger tube was inserted to help with leakage. This tube failed on us Saturday night, soaking him during his continuous feeding. He spent Sunday in the ER, with a CT showing that the J port had migrated into the stomach. He was readmitted to Hopkins on Monday, and they have once again replaced the tube and monitoring it regularly through CT. I'm not able to be with him b/c I'm running a fever and developing brohncitis. My family had to go back to NC (my brother-in-law had to have a bone marrow biopsy at Chapel Hill on Monday) so, it is just the boys and me. I've talked with the doctors at Hopkins, and they now want him to go to a nursing facility instead of being released home. I know this is killing him.....but he knows I'm not able to care for him like I'd hoped. Because of all the complications, I'm not able to give him his meds. Most are to be crushed, and they refuse to clear the G tube. For him to be there, with nobody, not able to speak, unable to write...has to be so depressing. My heart breaks for him. I was able to do what was needed (wound packing, suctioning.....etc.) but with all the problems, I've been left useless.

Love,
Mandi

Mandi, I'm so sorry, I hope things improve for both of you soon,

Brenda

Dont give in Mandi you can do this

liz

Hi Mandi,
I've been keeping up on your posts, you have both been such strong fighters, you can get through this. If the bug you have caught is anything like I had, you should be over it in just a few days.
I'll continue to keep you both in my prayers.
Donna

Tomorrow he will be admitted to a nursing home.

To a man who was building hospitals when he was admitted, and I used to walk him down just to watch the construction at Hopkins ( would rather watch it than TV) it's a big blow.

Thank goodness you are all here.

I'm afraid I've lost him. The man that was bigger than life itself is leaving me.

Mandi

its not over till the fat lady sings mandi amd i aint singing a note yet.

chin up love

liz

Hi Mandi,
Just wondering how you are holding up...

HI iAM A CAREGIVER TO MY SISTER WHO HAS ORAL CANCER OF THE TONGUR TO BE HONSET WITH EVERYONE SHE IS NOT VERY OPENED ABOUT WHATS REAALY GOING ON , SHE WHATS HER FAMILY THERE , TO BE WITH HER BUT WHEN WE QUESTION , HER TREATMENT BECAUSE ANGRY ..........

oK MY QUESTIONS IS SHE IS RECIEVING TOMOTHERAPY EVERYDAY , THEY JUST DISCOVED IT HAS BURNED A VERY SMALL HOLE INTO HER MAY ARTERY IN HER NECK , IS THIS NORMAL FOR THIS TYPE OF RADITION . PLEASE ANYONE SEEK HELP YOU CAN EMAIL ME AT
[email protected]

Louise,
I have posted your message into a 'New Topic' under 'Message from Louise' so that you may get more replies than here. Hope that's okay

Brenda

Dennis is now in the nursing home. It seems like a good enough place, but he hates it. The therapists there are great though, and I hope to have him home in a few days. The main fistula, along with the incisions, are healing well, which is a blessing.

Love,
Mandi

Mandi thats brilliant news,i am so happy for you both,and hope Dennis continues his improvemant.

liz

That's really great news Mandi. How are your kids handling all of this? And you for that matter, take care of yourself.
Minnie

I'm here......that's all I can say at this point. The whole experience has been a nightmare...

Good news, Dennis came home today. Bad news, Dennis came home today.

It is all so overwhelming. I'm doing his feedings via pump, packing the wounds, taking care of the trach, suctioning, and the wound care on his open abdomen incision. Couple that with 13 meds that have to be coordinated three times a day. (All but two have to be crushed)

And try to do all the other things..........two kids trying to stay normal, running in two different directions, bills, meals......

I was told tonight by the visiting nurse that a patient is entitled to a home nurse a certain number of hours per day, if they have a trach and a feeding tube. Has anyone else ever heard of this so called "right"?

Love,
Mandi

Mandi - I'll try to answer your question about a home nurse. Unfortunately, the answer is "it depends" - basically on the type of insurance that Dennis has. I can't remember how old he is, BUT if he is covered under Medicare, and is certified as being "homebound" which means he really is not capable for leaving the house to do normal things (go to church, go visit people, etc), then yes, Medicare does allow a certain number of visits per week for both a home health aid and a nurse (and even a Physician therapist if he needs that. However, if he is covered under a private insurance plan, then it would depend on your insurance coverage, and you'd need to find out.... Hope that helps a little.

P.S. - please do find out as I know this must be overwhelming for you. You need some help! You can also hire a private company that could provide a home care worker that would help with some of this - I know when my father was ill, and came home, my mother was in no shape to be able to provide the type of care he needed, and since my sis and I both work full time we helped find a wonderful woman who came in every day to help with my Dad....

sorry you are both going through all of this, and I hope and pray for you that things can start improving soon...

Dear mandi ,it really is overwhelming and very scary isnt it.I cannot give you any advice because your healthcare system is so very different in America and your situation just doesn't arise here,as home nurses and particularly cancer specialist nurses are all provided on our national health service.They were absolutely invaluable to robin and i in the few days between his terminal diagnosis and his admission to the hospice,even coming out at 2am one morning when Rob had a morphine toxicity episode.
Take care Mandi i will be thinking of you

love liz

Just thinking of you mandi and hoping you get the support you need.

Brenda

HI, Mandi, you are right on - you can't do this by yourself for a sustained period of time and retain your health or your sanity. What is your Insurance situation? A good Ins. Co. should cover Home Health care [and visiting nurses and even aides, for a period of time.] My husband was not on Medicare, so I can't speak to that. Don't try to fool yourself into being Superwoman- it isn't doable at the level of care your Dennis needs right now. Wishing you the best going forward. Amy in the Ozarks

When Dennis came home last weekend, an RN was supposed to be here to attach his wound vac.

This guy pulled out the instruction booklet and proceeded to "wing" it, like someone chasing wire on a new stereo system. He didn't have a clue.

Thank God, they took out DJ's pic line before discharge, because he was supposed to teach me the care for that, but told my sister-in-law ( while waiting for us to get home.....YES, we had a flat tire trying to get here from Baltimore) that he had no idea how to deal with a pic. My brother-in-law is in remission for leukemia, so, thankfully, if it had been the case, she could teach me.

This dork finally did (after 5 hours of reading the manual) a dressing that held all of 12 hours. Dennis came downstairs the next morning and the tube fell off. I called at 10 the next morning and another RN finally showed up at 9 that night (with her BOYFRIEND!!!!.......dressed to go to the bar) only to tell us that she didn't know how to do a wound vac either! Dennis got pissed..........took over and put his own dressing in place.

Fast forward 8 hours......he woke up soaked in his J-tube feeding. This was the second tube installed, since the first balloon failed in the hospital. He spent the next 12 hours in the ER.

They released him, and I had to take him back to Johns Hopkins the next morning. Another week there, and then to the nursing home.

Now, with the insurance being what it is, they don't give a crap that his diet has changed. He's lost 30-plus pounds in the last 6 weeks and a higher nutrient Jevity feeding was ordered, but they want me to "simply" double up on the Jevity that I've already been given. OK............now he is hooked up 8 hours a day just trying to get the minimum of nutrients that he needs.

I will be putting on my BITCH BRITCHES in the morning, and lord help whoever answers the phone. I don't give a crap anymore.

I'm here fighting tooth and nail for my husband. Where are all the other people who don't have caregivers? Not many are with us, I'm afraid.

Love,
Mandi

Jeez Mandi
if only you had the time and the energy,sounds like a bit of Petey like screaming is due.Local press or TV to take up the gauntlet on your behalf and kick some butt about the poor levels of home nursing available,and the mindfield that seems to be involved with health insurance.

I will never complain about the National Health Service again,and am thankful every day for The Macmillan Cancer Nurse Specialists who provide home care services for patients AND their families.

liz

Your Bitch Britches..................I like that one. Put them on tight Mandi and go after them.

Love,
Minnie

I'm gonna get me a pair too.....I've got a fight with my insurance company coming up, and I'm gonna be dressed for the battle in my b.britches. yeah!

LOL, before you put on th b. britches put on your calm rational side. Insurance companies do not like the expense of emergency room visits or re-hospitalizations. In addition to the expense, there is a risk of additional infections and cross contaminations.

In many situations, those are much more costly than in home nursing care. My insurance company was very accommodating when I requested some in-home assistance. I am sure it was for the reasons above.

Now, if you try to rationalize with them about how he is going to end back up in the hospital and if you don't get some help...then, put on those b. britches and go at it. :-)

Our insurance company assigned us a case manager, she was amazingly helpful. To us she was very kind and accommodating, although I'm sure her job at the insurance company is to prevent ER visits and hospitalizations.

If you have a case manager, start there. If you don't...just explain the situation and that your concern is that he is going to have to return to the hospital or the ER.

I'm sorry your journey has been so rough...for both you and Dennis. I've got your family in my prayers.

Mandi - what you said happened with your first experiences with the home care nurses is inexcusable. You are right - you should call that insurance company AND also the home care agency. You need to report to their managment what happened with the other nurses. If you don't feel like you are getting anywhere with the home care agency, you might want to try another one - if your insurance company covers several. Get a referral from a physician you trust, or someone you know that has had good home care if you can. You need help and if you can get the RIGHT help, it will be a lifesaver. Don't let them get away with that kind of incompetence!!!

Mandi: Give us an update as to what was accomplished today...

Hey, Mandy, along with the Bitch Britches [i LOVE that!} put yur Nurse from Hell hat- or Wife from Hell hat - on also- it completes the outfit. I still don't know what your Ins situatin is, but, as Ginny M. and Margaret said, we also had an Ins. case manager, who was wonderful. I requested one AND I made sure she came to our house and met John in person[after she saw the condition he was in, I never had another problem getting her assistance] AND I had our family physicial recommend the Home Health people he had the most trust in and they turned out to be really good. You really need to be the person in control here. Take a deep breath and an hour or so to write down what you really need in the way of help to get you both through this phase- then get on the phone and raise hell until you get it done. Remember, your health as well as Dennis's is at stake here. Incompetance is not acceptible. Sending you strength to deal with this- Amy in the Ozarks

With all respect, I've asked, whined, pleaded, and begged for help.

I totally agree when it comes to asking for help with sugar before vinegar. It made no difference, at least with the case worker who was representing him, and corresponding with the insurance co.

She tried.......they all did at the nursing home, but they were blindsided when it came to working with UnitedHealthcare.

The insurance, point blank, said that he could "make do" with the supplies he had, and left it at that. When he was done with what he had already been sent, they would send more.

I did manage to find a kind soul on the phone today who agreed to write up the order as a "swapout???" and get him the Jevity that he needs delivered tomorrow. But, I had to go through an ordeal of explaining how this was affecting him, not just physically, but mentally, before she agreed. Can you imagine being hooked up for 8 hours a day, just to maintain....not even considering trying to gain back the 30 lbs. he lost in the past six weeks? Let alone the wound packing, suctioning, dressing changes, trach care, etc.....?

He was esentially pushed out the door of the nursing home, b/c he was there for rehab after the stroke....yes, but it was the only place that was approved, b/c he wasn't approved for a longer hospital stay.

Insurance said he had to leave Hopkins. When the physical therapists discharged him at the nursing home b/c he could walk, dress, wash....etc.....the insurance co. wouldn't even listen to the nursing notes. (These were the original concerns for wanting to keep him in the hospital. Keep in mind he lost the use of his right arm.........he's right handed........not only did he lose his voice, he can't communicate at all now). They could care less at that point whether he aspirated, didn't care whether he had a suction machine. In their opinion, he didn't need rehab, so he wasn't worth paying for a bed in the rehab.

I'm telling you.........I'm a patient person, but this was b*llsh*t!

Thank God, I have a good nurse this time (only after threatening the head of the agency). We had to use the same facility that initially sent out the first two losers, b/c that is the only facility nearby that our insurance will recognize. (We are 15 minutes from DC and Annapolis.....go figure) He is the first who understands that a caregiver can't run on air alone.

He called the insurance himself today, and requested that I have a nurse a minimum of 4 hours a day. It is apparently something that I'm entitled to, but nobody will tell you about. With Dennis having a trach and PEG, it is protocal that it be provided. How can you be so money hungry that you don't let patients who need the services know that they are available?

I don't get it. Why?

Love,
Mandi
aka BB

Hi Miss BB. ( i will always and forever call you that now)

It seems like you did get some things accomplished today, which is a good thing. Keep pushing and keep at them.

I worked for one year in Med Review (i'm a nurse) for Trigon/BCBS here in Portsmouth Va. It was the WORST job I ever had and it left me feeling heartbroken each and every day. My job was to review and determine if the test, medication, service, etc., was needed and would it be covered under insurance. Now, the first thing you are taught when you walk through their doors is that you work for THEM and NOT for the client. offer information to a client about services that are provided under their policy that they might not be aware of..................HUGE NO NO. Never, ever, ever do that! Deny the 45 year old the second mammogram, even though her mother and older sister died of breast cancer. I could go on and on. My point to you is this, they are not going to offer you the info on services they provide. That's going to be up to you. Call and request lit. and paperwork on EVERY SINGLE SERVICE THEY PROVIDE FOR UNDER ANY CIRCUMSTANCES, and then read through it with a fine tooth comb. It will be the best thing you can do.

Much luck and much love,
Minnie

Mandi (BB - I love it!) - I am glad you finally got a good nurse sent out and that he realized the situation. I hope that they continue to provide you with smart, caring nurses to help you with Dennis and provide some relief for you... and you continue to call that agency head if you need to... Sorry you are going through all of this, I just hope and pray that things will start to improve for both of you.

Thank you all.......you don't know how much it means to be able to share all this with you and be understood.

I know everyone on the outside means well, but if you have never faced this situation, you don't have a clue how frustrating the whole thing is.

I finally had an insurance RN call me this morning.......no, they don't cover at home nursing for the caregiver to do what else might be needed. They are working on giving me a list of non-profit facilities that offer respite care.

Sigh........Dennis is not going to go for that, I'm afraid. He already has so many issues that he would rather be left alone than depend on a volunteer.

Still waiting for the Jevity to be delivered....I swear, if I have to call them again, it will be ugly.

Also called to make a follow-up appointment with the neurologist........first available is JANUARY 25. Transferred to his answering service and nobody answered. Called for a follow-up with his ENT surgeon........got voicemail but no call back.

DAMN!!!!

Love,
BB

wish i could join in here but it is like a foreign language to me!!Would just like to say i am thinking of you

love Liz

Dear Mandi- those BB's are not quite tight enough yet:D . You still have some battles to do. It will take more energy than you think you have, but fighting "UP the line " with United Health Care could get you where you need to be in terms of assistance- keep asking for the supervisor- if that person turns you down- ask for his\her supervisor-bottom line-don't take No for an answer unless it's to a question you can know you can deal with. You all have paid the company good money, in good faith. They do not have the right to be the sole determiners of Dennis's health care. Ask for another case manager-one who has experience with oral cancer. If they say they don't have one, then tell them they are deficient in their knowledge and you won't accept that. You all bought that Ins. plan in good faith.I know you don't want to have to deal with this because you want to spend your time with Dennis- it's crap [that's a southern term]. What can we do to help? We could bombard United Health Care with ugly letters for starters.Please don't let yourself get sick- you don't have time for that. Amy in the Ozarks.

Mandi: I managed a law firm for several years, and my experience in dealing with UHC was truly a nightmare! I will tell you that there are more complaints about UHC than all the other healthcare providers combined!

Write or call the Dept. of Insurance in Maryland and DEMAND that someone listen to your plight! Raise HELL, gf!

Over and beyond the insurance issues:

I took Dennis in for his follow-up today. That, in itself, was good. The fistula has closed, we could get rid of the trach, and they gave me better treatments for the open wounds.

FAST FORWARD...I made a wrong turn in Baltimore trying to get home...........God forbid, anybody who has ever been to Johns Hopkins knows how simple that is. Dennis started throwing his hands around, (I'm surrounded by 4 lanes of traffic), After asking his directions several times (granted, I'm trying to read lips during all of this) I finally pulled over, and he promptly pulled out his writing board and told me to "F^ck You".....He was pissed b/c I couldn't find our way out of Baltimore. I tried to tell him that I was lost, was sorry, and wouldn't go any further until he helped me. He took the message board and shoved it in my face. I have the bruises to prove it.

At this point, I wandered around, finally found Bowie, and reported it to our home care nurse.

I can't do this. I've been here............I've fought for everything that he has. This week makes 20 years that we've been together, but , damn..............when is he not responsible for some of this?

Love,
Mandi

Oh Mandi,
Am so sorry this happened to you--the stress of caring and worrying is bad enough, but add to that the driving hassle and then Dennis' reaction and you must be feeling devastated.
Hope the home care team can give you some comfort, thinking of you,

Brenda

My life has been changed forever since my wife bought me a Garmin gps navigation system.

She drove me 60 mile each day for Tx and I mainly slept. This is not to say that I was a "good" patient - I wasn't. Having the crap kicked out of you by the Tx is something only another person who had walked in those shoes can understand but physical (and verbal) abuse is domestic violence.

Anti-anxiety meds (for Dennis) and some counseling may be in order here.

Dennis is already on Zoloft and Trazadone. You would think those, coupled with Oxycodone every 4 hours, would be enough.

The home health care nurse wants to talk to him today. I've told him that is fine.

I'm a small person (5" 0', 110 lbs) He is still a strong man even though he has lost 30lbs. I don't mean any harm, but enough is enough. I've got two teenage boys to think of.

He just proved to me yesterday that our lives aren't worth considering, in his opinion. I've got to look out for us.

love,
Mandi

Mandi, You absolutely do have to look out for yourself and regardless of how much hell your husband is going through, hitting you in the face with something is physical abuse. It may be something he would never do were he not in these circumstances but it doesn't matter--at this point you need to take care fo yourself. I do think if possible your husband needs counseling. he can't be happy with himself that he behaved that way.

And you have been an AMAZING caregiver advocating for him this way. I only wish my husband was interested in doing half the advocacy and learning about what I needed when I needed him most.

Nelie

Mandi - I am so sorry for what you are going through. I hope the nurse can talk with him AND evaluate what's going on. Not to give Dennis any excuses, but it could be that the combination of meds plus his health status has pushed him to the point that he is not psychologically stable. If his nurse has any doubts, his primary physician should be consulted. I remember when my father was very ill and he did the same thing to me one day in the hospital - shouted at me and tried to hit me. I ended up sobbing in the hall, but it was all a result of the medication he was on plus his health issues. I know you are doing your best and it must be so difficult for you. Wish I could do more to help...

Mandi, Please know that all the caregivers here are at your side, holding your hand, and propping you up. You are in a surreal situation and it is very hard to deal with. How strong are you? Amy in the Ozarks

Oh Mandi!!!! How very familiar that scenario sounds,and how many memories of drives home from the hospital blinded by scalding hot tears it brings back.
Without a doubt Robins apparent total disregard and contempt for my input and my feelings ground me down to the point of leaving,which of course i eventually did for a short while,a decision which sometimes i regret bitterly,and at other times i know was the hardest but the right thing to do because ultimately i wouldn't have had the strength to cope with what was to come.

It Wasn't until the palliative care team with all their practical and emotional experience were on board that i managed to even begin to understand why he was behaving the way he was.They had seen it all before many many times and sat for ages talking me through all the reasons why he was so aggressive and seemingly dismissive of my part in his care,and how his disease was affecting me.

I realise Dennis isn't in the same place as Robin was but the worst time we had was post Tx long before we found out he wasnt going to make it,and seemed to be born of anger and frustration because his recovery wasnt following the route we had been told he would take,and it was so much two steps forward and sometimes three steps back.That coupled with the drugs and the fear of the future were a pretty explosive mix .

None of this will help you at this stage of the game,you are exhausted,scared,frustrated,hurt and i bet you feel totally unappreciated and also very angry.
i promise you although it wont make all these feelings go away,you are not alone honey,but you need to find two things.

Firstly someone for you to be able to talk too,and secondly someone for Dennis to comunicate his feelings and frustraions too.

Juliekay,Margaret myself and many many others have unfortunately walked in your shoes and its not easy and is not pleasant,so please do not hesitate to use our experiences to let us help where we can.It does get better i promise.

love and hugs
liz

Liz, this is the reason you are here. Your experience, your "walk towards the light with Robin," has given you insight like no other. Please know on your darkest days, that you have a purpose! Deb