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