I don't even know how to start this. Got the phone report late today that John has more[new?] cancer at approximately the same site as the other. I got the report from our Otolaryngologist's nurse, which I thought was inappropriate, but he was out of town. I absorbed about 1\2 of what she said. But here is what I remember right now. He wants to do more surgery, which will include a jaw resection and replacement with bone from somewhere else, remove more lymph nodes and remove more of his tongue, put a peg in again and a trach, and then start chemo. WHAT questions should I be asking this time? How can I prepare John for this surgery? [the last time around he didn't want to know anything, but I have printed a zillion pages from here for him to read over the last 8 months and he has read every one and asks for more] I need to know something about resections, trachs and more about chemo before we start this round. I am counting on you all for help and info here. You have kept me going thus far and that has helped me keep John going. Amy

Oh Amy, My heart goes out to John and you. Such difficult news after the fight you've already fought. I agree that the nurse should not have been the one to tell you this and I think you should say something to the otolaryngologist. He may be a doctor that has a hard time delivering realy difficult news and if so you should be having a direct conversation about that now.

I know very little about this compared to a lot fo people here but I have thought a bit about what I'd want to know about available procedures if I got the bad news that I had a recurrence and I can tell you what I'd want to know VERY clearly before starting anything:

1. what sort of complications and quality of life issues can occur and are likely to occur as a result of this procedure? What is the likelihood of each occuring?

and I'd want to know, to weigh against the risks:

2. What is the likelihood that each of these procedures will get rid of the cancer? Send the cancer into remission (and if so for roughly how long)? Keep the cancer from growing as fast (and for roughly how lojng?)

also I'd want to be sure I knew about what other alternatives there were to the recommended treatment and the dooctor's eprceptions of the risks and benefits of those alternatives.

Finally, if I ever have to deal with what you're dealing with, I would want to go to a CCC (either Sloan or Dana Farber) for treatment--the local folks here, great though they are, are not doing the latest clinical trials and are not among the top specialists in the nation. At this point, you need all the firepower you can get against this disease.

I will be holding you both in my thoughts--and the rest of your family as well. I hope other people ehre can give you more concrete suggestions and encouragement.

Nelie

My prayer for you is peace of mind... When cancer recurs we are prone to panic, especially the insensitive way you got the news. Wait till the doctor gets back and sit down with he/she and discuss the options calmly. If you are not satisfied with his/her answers or demeanor, FIND YOU A NEW DOCTOR.
Darrell

Someone please talk to me about what to expect to while John has a trach in [supposedly for a couple of weeks} Will he be able to talk? And please give me some input on this jaw resection and replacement surgery, will I be able to care for him at home without a visiting nurse? We know about pegs and lymph nodes - been there,done that. Thanks, Amy

Amy,Wish I could help answer any of those questions. I have to say I'm quite surprised you havent' gotten more responses to your initial post about this. I'm wondering if you'd get more responses if you posted this under "Medications, Treatments, Procedures". Nelie

I am sorry that you are back in this situation again. I am sure you will be able to care for him at home. We only have 4 peopel that I know for sure on the board that have had a trach and I urge them to post to you since I have little practical information to offer you myself. I have met with many people who have had the grafts and reconstructive mandibular work done, and none have felt that it was horrible as it seemed when it ws explained to them. Their results at the end are truley amazining. But of course the primary considerations are the complete elimination of the disease. Please post after your meeting iwth the doctors as to what they are recommending, and I will do my best to research what they are recommending for you. You are in the thoughts of all of us here, as your many posts have made you family.... and we all share your concern.

Minnie - If you catch this thread, please give her a call to talk about the bone grafts, you know the ropes on this.

Amy
No John will not be able to talk with the trach in place so you need a whipe board, (much beter than bits of paper) and download free text to speech software, www.readplease.com
He may not need it for to long I had mine for a week, once they are happy that all the swelling has stopped they will remove it
I'm sure you will cope fine
Like Brian I hope Minnie picks this thread up, she was a great help to me over the trach, and I'm sure she will fill you in over the surgery..
Sunshine... love and hugs
Helen

Amy
Have mailed Minnie and I'm sure she will get back to you, her surgery was the same as they are planning for John
Tell John the tracie doesn't hurt, they have to suction it when it gets a bit clogged thats just a bit uncomfortable. When they remove it they just leave it to heal, so then you have to remember to put pressure on the dressing when you talk or you blow it open again and healing takes a bit longer, (yep once I could talk I was away, and I would forget, but it healed fine)
Ask away anything you think of Amy..
We are all here for you
Sunshine.. love and hugs
Helen

I sent this email directly to Amy and John but decided to post it here also in case anyone else ever needs the info. Let's all send some energy their way and make sure we're here for them.
Amy, if you send me your phone number we can talk.

Hi Amy,
Please know that I have thought of you and John many times an hour this weekend. All of us on this site dread the thought of a recurrence and here you and John are having to deal with what we most dread. I will be praying long and often for both of you.

Now, let's move on to the treatment that he needs to save his life. And it IS life saving treatment, as I am a testimony to! It is an easier treatment then the ordeal of radiation but it is no walk in the park. My surgery took 16 or so hours and I was kept sedated for a few days afterwards as it's very important to keep the head in one position, I believe it's beneficial to the body accepting the new bone. My left lower jaw, gums and teeth were removed from my ear to around the curve of my jaw. The jaw was reconstructed with the small bone from my left leg, along with some arteries, etc. I had a trach in for 5 days then it was removed. When I woke up the first thing I remember was the pain in my leg. I had NO pain in my face, head or neck area, although I looked as though I had been in a battle. I had severe swelling in my jaw, chin and neck area, remarkably little swelling in the rest of my face. My family told me that I was very swollen in other parts of my face the first few days after surgery. My looks had quite an effect on my family, so be prepared for it. Also, they will most likely have John's hands restrained while he is sedated, as it's normal to want to pull out the trach. My husband was furious when he saw my hands restrained and ordered them removed. In my drug induced state, I immediately pulled the trach out. He's so stubborn that he wouldn't let them put the restraints back on and he sat there all night, holding my hands and arms, he's such a great guy.
With the trach I couldn't talk until the second day I was awake, when they put in the type of trach that you can speak with. Until then, I wrote notes to my family. Again, my only source of pain was my leg and the bed sores that had developed while I was sedated. I turned out to be very prone to bed sores, hopefully John won't be as fragile as I was in that department. I was on a morphine pump that managed the pain but I still had severe pain in my leg. It was discovered on the third day of my being awake that the cast had been applied far to tight and had caused deep decubitus on the top of my foot and on my heel. Once the cast was off, the pain eased a bit but my leg was still very painful for a few weeks afterwards and it took months for the decubitus on the top of my foot to heal, and the large opening on my heel just healed up over the past two months. Healing in that area is compromised as some of the blood supply was taken along with the bone. I developed an infection in the incision the day I went home from the hospital, lucky me. Cleared up fast though.
I will warn you now that the most frightening part to me wasn't all the staples in my face, not the foot and a half long incision on my leg, not the drainage tubes hanging from my face and neck. It was the trach, it terrified me and kept me in quite a state the first few days. I felt like I couldn't breath well and it's pretty scary when it clogs with phlem. I can assure you that I was breathing fine, they would prove it to me with my 99%-100% oxygen saturation rates, but I still felt like I couldn't breath well. When they took the trach out it didn't hurt, was just very scary. But I was so darn happy to have it out I got past the fear, believe me. There is a hole left where the trach canula was and it isn't pretty to look at. It shrinks to a slit in a short amount of time but it takes at least 3 weeks to heal. I struggled with the trach hole healing up as the dressing you have to keep on is uncomfortable and the tape used to keep it in place irritated the skin on my neck miserably. But, it was minor compared to everything else. After the trach is removed, John needs to remember to put his two fingers over the hole when he talks, as it will promote quicker healing. The less air that goes through that opening, the quicker it will heal. I went through a spell of being very scared to go to sleep the first few days after they removed the trach. For some reason, I was afraid I wouldn't wake up, not sure why! My husband would hold my hand until I fell asleep, but I didn't sleep for more then an hour at a time for the first few days after trach removal.
If they use the bone from Johns leg he won't be able to walk for about 3-4 weeks. I used a walker or crutches, then went to a walking boot. Make sure the PT at the hospital comes to give some lessons on using crutches and a walker, it helped me alot.
Removal of the drainage tubes isn't comfortable but it's not horribly painful either, make sure you know when they are coming so he can have some pain meds an hour or so ahead of time.
The doctors will continuously ask John to "make a fish face" or try to whistle. They are testing for the condition of the nerves at the corner of his mouth. Mine were toast so I will never whistle again and will forever have a lopsided pucker, but I don't care. It's easy to adapt and adjust to and I don't notice it much any longer. I have no feeling in that half of my chin, that half of my lower lip, and most of the way down my neck. As I said, I barely notice it anymore.
My stay in the hospital wasn't fun as my care wasn't very good, stay on top of Johns nurses about his pain meds after they take away the morphine pump. My husband ended up staying with me every night and my mom or daughters during the day while he worked. I had a swallowing test done on about the 10th day and I swallowed just fine so started with some apple juice and puddings. Remember now, I had not had any radiation treatments at this time. It may be more difficult for John where eating is concerned. Three weeks after my surgery I was eating as well as I had before my surgery. Radiation is what affected my eating, not the surgery in anyway. The surgery also did not affect my speech. I do have some pretty intense stiffness right under my jawline on the affected side but I'm very used to it now. I also find that I prefer to sleep laying on the unaffected side.
My leg now is healthy but weaker then my other leg. I can't stand on that one leg and balance and I can't jump on it, it's not strong enough. But, I walk fine and can lightly run if needed. I've had some episodes of my leg being very painful after a day of extreme physical exertion but it had to be pretty stressful on my leg. A few extra strength tylenon takes care of it.
I tried to answer any questions you might have, but I'm sure there are hundreds more. Just send them to me and I'll get right back to you.
I wish you didn't have to deal with this and that I could take all the pain and fear away. But, that's not possible, so the very least I can offer you is the comfort that though this surgery is a challenge, it is doable and much easier to manage then radiation. At least in my experience it is.
Take care and let me know what else I can do for you.
Love,
Minnie

Amy,

Ask about a valve that goes on the end of the trach so your husband can talk. When I had my trach, my ENT kept downsizing it every few days. After the first week, he gave me a valve for the end of it so that I could talk. As soon as that happened, I threw my wipe board out.

John

Thanks ya'll. I'm writing down everything you send. Amy

Amy, I am just stunned that you and your husband have to deal with this after all you have been through. Please know I am another sending all good wishes your way.

I, too, had a trach, and the scariest thing about it was the suctioning. When I first awoke after the surgury, there were a lot of secretions and a couple of times I had to gesture wildly to get some suction, so stay close and watch for that.

As far as healing, I am no spring chicken, but mine healed very rapidly - probably a week or maybe ten days at the most. And nobody told me about putting my fingers over it to talk, so it might have been even faster if I had.

When this is all done, you will be able to feel the sighs of relief from all parts of this country and beyond.

"When this is all done, you will be able to feel the sighs of relief from all parts of this country and beyond. "

You can say that again! Amy, you and John are very much in my thoughts every day. Nelie

Amy,
I awoke from my biopsy with a trach. The ENT surgeon thought that my tumor was so large that the biopsy might choke me so he put in the trach. At first I could only talk if I put my finger over the end but the next week he replaced it with a "talking trach" that allowed me to speak normally.
Once I got to M.D. Anderson the surgeon there said I never needed the trach in the first place and he had it removed by his his P.A. who taped up the hole, which healed in a couple of weeks. The trach is like the feeding tube...at first it is scary and you doubt that you will be able to deal with it, clean it, suction it, change it out, etc., but after a couple of days you realize that there is not much to it at all. One time mine fell out on the counter and I just stuck it back in.

I am sorry about the new ordeal. Best of luck with it all.

Danny G.

Don't know about you all, but I think I will investigate buying stock in a "printer paper" company. As I type, I am printing out all of the above.
Danny G. we are thinking hard about a 2nd opinion at MD Anderson,. Will see what transpires at our meeting with John's surgeon[which is not scheduled yet.] I can't tell you all how much your imput means to us right now. Amy

Amy,

Reading what Minnie wrote really brought back memories of my mom's trach...I do think that was one of the scariest things about her surgery. Make sure you have nurses that are willing to help you out because my mom like Minnie did not get the best care and some of the nurses had no idea how to suction and it was a truly frightening experience for my sister and I. At one point my sister had to run down to the floor below to get the nurse that my mom had, had the night before to come and suction her out because the nurse that she had at one point barely spoke English and we thought she was going to kill our mother..(strange because when I talked to a close friend who teaches nursing at USC county hospital she said that is one the basic things that she teaches students in nursing school.)

My mom's trach hole healed up pretty quickly and now since her radiation you can barely see her scar. I think the thought of the trach was scary to us but after seeing her we became used to it but believe me we could not have been more releaved once that was gone.

My thoughts and prayers are with you and John. My baby girl Keeley and I will definately be including you in our nightly prayers.

Hugs,
Dani

Thank you Dani, for your input. The nursing care issue scares me alot because since I had the stroke, if I don't get enough sleep, my brain gets really fuzzy. I know that I will have to spend some time in the "hospital hotel" resting in order to help care for him. As things stand today, surgery is scheduled for Feb 9th. We go for a "face to face" with the Head and Neck surgeon and the Plastic Reconstruction surgeon on Feb 1st. Since our H&N surgeon is out of town this week, I asked his nurse today about how many of these procedures he has done. She said he only does H&N and is Board Certified in Otolaryngology and Oncology and has done alot of this surgery.[ I didn't get to ask how many of those folks are still out there, but I will Feb. 1st] She also said this Plastic Surgeon is the only one he uses, so this guy has done a bunch of these too.I assume we can take some comfort in that. Wish things did not have to move so fast! Thanks for being here for me Ya'll. Amy

Hi Amy,
I've thought of you and John alot today and Dani's post reminded me to tell you that my trach scar is barely noticable also. I did have a cosmetic surgery to revise it but it still didn't look bad at all to begin with.
When I was diagnosed it was like walking into a world that I didn't know existed and I simply didn't have time to acclimate myself. I had to really, really trust my feelings. Much is said on this board about second opinions, and I agree with all that is said, a second opinion can be a valuable, sometimes lifesaving, tool. I also believe there are times that we just know there is no need for a second opinion because the first opinion simply feels right. That's how it was with me. I knew the moment I met my doctors that I was where I needed to be and we looked no further. I didn't research them, I didn't know their "track records", none of that. All I knew was that I believed every word they told me and I trusted that if anyone could save my life that it would be them. In almost three years they have yet to let me down. They know the names of all my children, spent the day at the walk a thon I hosted, and spent hours helping me set up my upcoming implants. What I am trying to say is to examine your feelings and make sure this is how you feel about Johns doctors. If you don't, then get a second opinion. If that means going to MD Anderson, then go, even if it means you have to beg, borrow and plead for the money. Shoot, I'll loan you the money myself if you need it. They say that doctors like to play God, have a God complex. I like to think of it as a role forced on them as they have people placing their lives in their hands on a daily basis.
I have always taken chances based on instinct and it's never let me down. Shoot, everyone told me that my husband was to different from me for a marriage to work............boy were they wrong, my instincts were correct when they told me that he was top of the line husband material! And he's spent the past two decades proving it to me and everyone else.
I'm rambling here. Hope I'm making my point though. Listen to yourself concerning the doctors.
I'm here if needed.
Minnie

Hi Amy, Minnie's post about the trach and her fears reminded me of my fear with the trach. To me, that was the worse part of the surgery. However, the radiation is what kicked my butt. I am glad to say that I am still here more than 3 years later. If you would like more info from me please email me.
Love, Carol

Hi Amy,

I am so sorry to hear about John. As a caregiver too, I know how scared you must be. Everyone has given you so much valuable information, I just wanted to reiterate about the trach. My husband had to have an emergency trach put in midway through his radiation treatments and they kept it in until he finished treatment just to be on the safe side.

At first he was very scared because he felt like he couldn't breathe. When he was in the hospital he would call the nurses in a lot to suction his trach. I stayed with him and that gave him peace of mind to have someone with him. He couldn't talk with that particular type of trach.

When he came home they replaced the trach with another kind that he could talk with. I also learned how to clean the trach, I suggest you have the nurses teach you how to do that too. It's very helpful. You might also want to get a suction machine to use to keep the trach cleaned out as well. I can't tell you how many times at night my husband would get up to use that suction machine.

When they removed my husband's trach, I was amazed at how quickly it healed. He still has a small scar but you can barely see it.

My prayers are with you both. You've got another battle ahead of you, but I know you can beat this awful disease!! Take care and hang tough.

Hugs,

Shelley

I want to make sure that we haven't scared Amy and John about the trach. Obviously, no one would volunteer to have one, no one wishes for one. Obviously there is going to be fear related to this. BUT, 99% of my fear came from not knowing what to expect, not having any knowledge about a trach. I didn't find this board until I was finished with radiation, until then I had no contact with anyone that had been through the ordeal I had been through. I speak with great confidence when I say that my fear would have been greatly reduced if I had been empowered with knowledge of the trach. Not how it was put in, not how to suction it, not how it worked. Knowledge of how it would make me feel. I have always said that I can handle anything if I just know what to expect, I hate to be blindsided. The trach blindsided me, I wasn't prepared for it. If I had to do it again, I would breeze through. So, with that said, I hope that our knowledge will lessen Johns fears rather then increase them!
Love,
Minnie

Thank you Minnie, well said. I felt bad about my post after I read it again, my intent was not to scare people about the trach. Like you said, it was more fear of the unknown, I guess I missed the part when my oral surgeon told me I would have the trach, I was in shock as it was and probably wasn't listening to details. I didn't find this board til way after treatment. John,you will get through it, trust me, we did. Love, Carol

You all are not scaring me. I'm like Minnie- I just don't do well being blindsided. Before John's 1st go round with this, he didn't want to know anything about the surgery and there were alot of questions I wanted to ask the Doc, but did not because John was always in the exam room. To be honest, most of how I learned to care for him after surgery and during rad tx. was from reading here and posting questions. I am going to move us back to Currently in Treament after our Feb. 1st presurgery meetings with the Docs. So don't lose me. Love, Amy