On Monday I went to my regularly scheduled appointment with my ENT. I was perpared to drive 60 miles one way for a 10 minute appointment. Talk about the trush I'd been fighting for the last two weeks and leave. This is not how it turned out at all.
He found a spot that was not there six weeks ago. He was able to do a biopsy. I'm not sure how he got into my mouth. My trimus has gotten worse over the last few weeks. (I guess that was another sign) He told me while I was in the office that he didn't think it was going to be very good at all.
On Wednesday, while clothes shopping with my 15 year old I got the call. It's possitive. As of right now, my schedule looks like this I have a CT on Monday the 24th, a follow up the with ENT on Tuesday and surgery on the 31st. I don't know what kind of surgery or what will be done. To tell the truth at this point I don't even know if there's a point to doing the surgery. We'll know more after the scans come back.
Amy
Amy...
I am so terribly sorry that you have a recurrance. It really stinks to say the least.
I also have severe trismus. Even without teeth I cant open my mouth wide enough to get a complete exam. Where exactly is the spot? What did the doc say about the surgery? This sounds like the whirlwind that I went thru with my 2nd round. Within 2 weeks of finding the spot I was having surgery to remove it.
DONT YOU DARE say you dont know whats the point!!!!! I feel so sad when you talk like that. We all depend on each other to get thru this. It can be done, please dont let this awful disease beat you down. Please vent all you want here we will support you. We are here no matter what your decision would be.
Wishing you the best possible outcome to this.
Amy
As you know, I actually have had a recurrence, so let me give a little "tough love" here. The point of the surgery is that you have a 15 year old who does not want to lose his mother. But don't think I do not hear you. When my ENT told me about the surgery I needed and the consequences, the very first thing I asked was "and what happens if I don't get it?" Her answer (which is probably not what a male doctor would have said) was
"In my opinion, you would be a foolish husband and father - but it is your choice" Now I am over 2 decades older than you and if my tired old self is worth saving with surgery, then certainly a young woman like yourself deserves and needs every extra year that surgery can bring.
This sucks big time and is very very unfair. so I know that you are venting and that's okay. Vent away here where you won't hurt or worry your family.
You are entitled to a pity party and I know I wallowed in it after my recurrance. Keep the faith Amy,
Charm
Opps. Didn't make my point well. Again.
My not know what the point was, is simply my way of saying that without the scan results I wont know how advanced the cancer is. Thus, I would not know if there is a point. There are several other things going on that I hadn't paid attention too that know have me very worried. For one, I have had a headach for the last two weeks. Same spot everyday. I thought it was just my sinuses. Maybe it still is just my sinuses. Maybe not. I have also had some stapping pains under my arms, didn't even think about that being anything, but what if has once again entered into my volcabulary. Of course I will fight, I've never just rolled over and not faught. I just need those results to know how much fighting will be required.
Since you've been getting regular checkups, and more importantly are aware of things changing, the odds are pretty good that you've caught it in plenty of time.
Amy
It is true that a point eventually comes when there is no point to further surgery, so I now see what you were trying to say,
We were just worried about you as I know that I seriously considered just skipping the surgery as I felt the cancer was just going to come back again anyway. Hope the scans turn out well,
On a totally different note, maybe you should buy a lottery ticket as you are now the first HPV positive poster to have a recurrence. The odds against that happening have to be similar to those of winning the lottery.
Seriously, my wife and I both cried when we read your post
It's just too too sad to think about but sometimes bad things happen to good people and I will never figure out why
We will add you to our prayers
charm
Amy
Im glad to see I misread your post. Having a recurrance is awful thing to happen. Not knowing whats going on and how bad it is can be torture til you find out.
Pete hit the nail on the head when he wrote, with your regular check ups it was probably caught early. Since you have gone thru this before, you know what to expect which makes you ahead of the game already.
Please continue with your routines, dont let cancer steal your time. Sending lots of prayers your way
Amy, put your hands out to catch the loving thoughts & prayers coming your way from Australia...you'll get through this....
Jeanna
Amy,
I am so sorry that you have to deal with this again.
Karen
We're here with you - you are not walking this path alone. Sounds like they are moving quickly and that is always good. There is nothing worse than sitting around and worrying.
You are in my prayers.
Donna
Amy, I am so sorry that you have to go through this again. We are all here for you. Keep us posted on what it going on. Sending prayer up for you now.
Amy,
I am wishing and praying only the best outcomes.
You will be in my thoughts and prayers.....hoping this is a simple fix and you can get back to your life.
Off to see the ENT. I should have some answers in a few hours. I know I need the answers, but I sure don't want them.
I just d0on't know what to say except you are in my prayers and thoughts. Next year you can join me and Christine for our awaited steak dinner. 2010 and never again is the motto.
I like the answers even less now that I know them. They are just as I suspected. Cancer is in the right tonsilar, bot area. Only good news in the whole mess I think is the fact that is has not spread into the bone or anywhere else. I am looking at ten days to two weeks in the hospital. I did not ask the size of the tumor or the staging I will have the opportunity on Thursday. I have decided to do the surgery on Monday the 31st. and not put it off. Im looking at a tracheonomy, mandible dissection, pec. flap, and a partial glossectomy. I am to be prepared to be in ICU for 3-5 days. I will start HBO treatment in the hospital and finish those up as an out patient. I don't think I forgot anything.
Amy
Your head must be spinning with everything that is happening and everything moving so quickly. Thinking of you.
Karen
Amy,
I am so sorry about your news. This is so much to take in. My thoughts are with you and I'm glad you will have your surgery quickly.
Sophie
Amy,
I'll be thinking of you and praying for your quick recovery. Remember to go wild and eat and enjoy anything and everything you can and want before surgery.
Kim
Amy,
So sorry to hear about this re-occurance we can all understand. Take care of yourself and give yourself a special treat of some sort before you have to go through this again. I will be praying for you and for your quick recovery.
God bless,
Bonnie
Hi Amy,
Just want to add my thoughts and prayers to all the others. Glad to know you'll be able to get the surgery done quickly and then can focus on healing! Best of luck with it all,
-Tricia
Thanks for all the well wishes. It helps so much.
Today is my PET/CT scan. The last time I had one done. Which was almost one year ago. (9/29/09) They gave me the results within a few hours. We went got something to eat and then meet with the doctor that read them. I walked out of there with color copies of the scans to bring to my doctors and several cd copies. I'm hoping for the same wonderful treatement today.
Amy
So sorry to hear about your reoccurance. Good luck with treatment. Keep us posted.
Sandy
Amy,
I'm sorry that you're having to go through this again and am adding my prayers to everyone else's. I know this has all happened very fast but sometimes that is much better since you don't have lots of time to worry about it. Hope all goes well with your surgery and recovery.
Thank you,
I'm back from the PET/CT scan. I have some very beautiful pictures that only have one rather large spot that glows. Nothing anywhere else. Thankfully. The only thing I can read and make since of is the SUV=19. I understand this to be a very high number. However, since I already had the area biopsied it wouldn't have mattered if the number was 2. I think all the other numbers on this are just the x and y axis numbers or something along those lines. She was going to do the dictation later today and send it out to me.
I do have a question. I guess it's retorical, but boy I would like an answer.
On June 10th I had a CTscan. It showed some edema in the left mandible area and that as really about it. Not a mention of the right side of my head or neck. Less than three months later I have a tumor that is big enough to see? Does that sound right? I know that SCC is agressive I know that it is fast moving, but man, just how could this be?
I know my question is just a dressed up version of why me. But if someone has an answer to this that makes a little bit of since, please tell me!
Well Amy all i can say is Rob had a clear body scan in January and in June he had FOUR tumours in his chest.When this critter is agressive it seems to spread like wildfire.
Liz,
That's just how it feels. Wildfire.
Ok, today's the big day. I have to be at the hospital at 10:30am central. I'm no longer nervous, just ready to get it over with. I only have a couple of things left to do. Drop the pour spoiled doggy off at the kennel, drive 60 miles, that kinda thing. So, with that I'm out of here for a couple of days. If anyone would like to check up on me, I have a caring bridge website. My darling husband will be updating for the next couple of days.
www.caringbridge.org/visit/amyknight
God bless Amy and good luck on your surgery. I will be thinking and praying for you as you move through your next phase of treatments.
Bonnie
Amy,
I'll be thinking of you of today and saying some extra prayers for your quick recovery.
Kim
Amy,
I've got you in my prayers as well.
Amy
Wishing you all the best for your surgery and hoping everything goes exactly as planned. Thanks for the link, I will be signing in often to keep up with your progress.
Thinking of you
Karen
Amy, thinking of you and wishing you the best. Stay in the fight!!
Susan
Anybody have any news on Amy?
Take care,
Eileen
I just went to the link she provided that is kept up on her for a blog as well as here and this is the latest update there. It was put up on Tuesday September 1.
Amy is out of surgery and in Surgical Intensive Care for the next 24 to 48hrs as of 6pm yesterday.I am only able to see her for 30 minutes at a time every three hours. She has a trac tube so she is unable to speak for now but she has pen/paper to communicate.She should get moved into a normal room today if all goes well. Also the doc said he will put in a smaller trac soon so she can talk. I'll post more later
Charles
Thanks for the update. Sounds like it went well. Here's hoping for a speedy recovery.
Take care,
Eileen
Sadly, the situation has changed dramatically.
I have just been reading the care page update from the 4th sept, a small part of it reads:
" My husband has told me that my cancer is so far advanced that it is inoperable. Or I guess I should say might be inoperable. They would have to remove my upper jaw, hard palette, soft palate, tongue, most everything in my throat, just to get to my carotid artery. Dr Lurton said that if he did the surgery he would be taking away what time I would have left. That she would never leave the hospital if she ever made it out of the OR"
It goes on to say that she will be seeking other opinions, and the pain had been excrutiating. She has been in hospital for 5 days and in ICU for a couple.
Karen
I HATE THIS DISEASE. My thoughts and prayers are with Amy and her family.
Donna
At the moment i hate it and everything about it so much i cant even join in the posts or the sympathies or even the congratulations.it all wears you down to the ground.
Amy, so sad to read this latest update. Good for you for exploring your options. I will keep you in my prayers!!
I'm waiting for my parents, sister, children, ex sister-in-law and ex-husband to get to the hospital. I am hoping that although, I'm still in a great amount of pain, that seeing them will be fun. I have been told I will not leave until after the weekend, so I don't have any false idea's about busting out of here. I just hope this hospital is ready to enjoy the long weekend with me. There is a conference room across the hall from my room. They call it "the libary", I believe that will be my room for the afternoon. Or my livingroom, it has a bathroom several coaches and matching chairs and tables, and a 35"tv.
I am also thinking about a small area outside under some old oak trees with some benches, we could hang out there too. I wonder when the last time a pateint was there to enjoy herself was? As long as I tell the nurse and have the family, I whould be just fine.
Yesturday when my doctor came in to check on me, I really felt pressured to make up my mind NOW. He wants me to pick either hospice or chemo. I feel like if I tell him Tuesday when he comes in that I would like a second opinion that I will "lose" any and all help from him. At this point I am even afraid he will withdrawl any pain meds he might precribe and just tell me goodbye.
Amy,
I have an idea that your hospital is in for some good times this weekend. If you can't go to a holiday party, glad the party is coming to you.
Regarding your doctor...No doctor worth his medical license is going to withdraw pain meds because a patient wants to explore options in a life or death matter. Can he help you get your case elevated to the tumor board ASAP so the RO and MO can weigh in as well? Are you able to get to other facilities for additional opinions?
Are they keeping you in the hospital for the pain meds or the trach...or both? Have you tried the fentynl patch? That might give you a little more mobility if the oral pain meds aren't cutting it.
Amy,
YOU DO WHAT"S BEST FOR YOU AND NO ONE ELSE!!!
Amy one thing yuou should never worry about is not getting the pain meds you need,no doctor who values his licence or who cares about his patient would ever do that..Just enjoy your weekend sweetie.xxx
Amy, I am sending you a HUGE hug. I am so, so sorry to hear your latest update. Push for all the pain meds you need. In this day and age NO ONE should be in uncontrollable pain. I wish I how some words of wisdom but I don't. I will continue to keep you in my prayers. Only you know what is the right decision for you. God Bless. Wanda
Amy
Not only do you tell the doctor you want a second opinion on what option (hospice or chemo) or other treatments, but also remember that the burden is on him of sending the tests etc to the new doctors and ask when he plans to do it. It helps if you can have a third party in there with you on Tuesday. There is no rationale reason you need to decide Tuesday. Some places do second opinions on line but you may have a tumor board right there in the hospital. Finally, cutting you off of pain medication is highly unlikely due to liability and license issues as noted by other posters. If anything, he should be giving you a patch.
Good luck and best wishes
Charm
AmyK
I'm so very sorry to hear about your reoccurrance. I'm glad, however, that you feel well enough to enjoy your family. Have a nice weekend.
Everyone has given you great advice. I certainly wouldn't let the doctor's intimidate you. I would definitely get a second opionion and/or check out other options.
I would like to add a bit of info from my experience. I was originally prescribed Cisplatin and radiation for my tx, but I convinced my doctors to do "Induction Chemo Therapy." There are several drug combinations available now, but the study I followed was Cisplatin, 5-FU and Textara (sp?). It severely reduced my cancer. I don't know by what %, but you could not feel the tumor any longer. I don't know if it would work in your situation, but I would difinitely ask. Your doctor's can research the study my treatment was based upon-TAX324. The treatment is specically for Stage 3-4.
I don't have the info in front of me at the moment, but a hospital in PA does laser surgery for head and neck cancers. If you want more info, let me know.
Amy, please know that you are in my prayers.
Sandyst
Amy: What to say? Boy this really sucks that it is back again and that you are facing such difficult choices. Ditto what the others said about your doctor. Do not let them intimidate you - this IS about you, and you should get exactly what you want.
When I read your post one thing that came through so strongly was your determination to make the MOST of every second. You go girl. Enjoy every second. I love your positive energy.
I too would recommend getting the patch for pain control with something else prescribed for breakthrough pain. We have the meds to make sure that you do not feel the pain - there is NO reason for you to be in pain - they just have to put the effort in and get the cocktail right.
You are in my thoughts and prayers.
Donna
Amy,
Enjoy your family time. It seems strang that the doctor gave you such a deadline. Maybe he is operating under "do something or clear the way for another patient." I certainly hope not and the he only suffers from a poor bedside manner. ditto to the suggestions for other opinions. you should insist upon this. Prayers for a speedy relief from the pain.
Has anyone heard from AmyK?
doesn't seem liek things are going well. Doubt we'll hear from her again.
Very sad.
http://www.caringbridge.org/visit/amyknight
Don't count me out quite yet. I'm fighting a nasty infection were the incession was made. After that? Well, one doc says not much can be done. MO says he wants to hit it again with cisplatin. As I start feeling better I start thinking I might hit it again with cisplatin. I speak with my MO again on Friday and my ENT this coming Monday. I speak with The Lord daily.
AmyK
Amy...don't let any of us count you out! I tend to be very pessimistic when my fellow OCFers hit so many roadblocks but we should never count out the human spirit and the power of a higher being.
So glad you are still fighting and we all send you strength and hugs.
Deb
Hi Amy..I have no idea how I missed this thread. Did you have another maybe? Anywho..that doesn't matter. I am thinking of you and praying for you. xo
Amy,
Soooo glad you posted a reply and I am happy to hear that you are starting to recover from the infection and that you are considering another option. I've got you in my thoughts and prayers as well!
Margaret
Amy,
Been wondering how you are doing. Sorry to hear you are having problems with infection and hope they get it cleared up soon. Here's hoping for a speddy recovery.
Take care,
Eileen
AMY it's so good to see you post and go for whatever you need. I would offer you a transplant but all of my parts are shot too. All that is except my mouth and language and you sure don't want them. You are still in the prayers and thoughts.
Amy- You are in our thoughts and prayers. I admire your fighting spirit! You are a big inspiration! I wish you weren't dealing with any of this. Hoping you are finding some moments of peace and comfort. LOVE Kate
Amy,
So glad to see you posting. Like others have said, you do whatever you need to! Your posts show what a strong and amazing woman you are. You truly are an inspiration! I hope that infection clears up quickly for you. Thinking of you and praying for you,
Kim
Hi Amy,
Along with the rest, I admire your fighting spirit! Hope you get that infection cleared up soon. Let us know what the Doctors say. I like that you talk to the Lord daily....I do too. You are in my thoughts and prayers.
Shelley
I thought I would just let you all know, I am still around. The infection is about as good as it is goning to get, per my ENT. Next MO apt. is Oct 8. I believe if everything stays the same I will be starting carboplatin and taxol at that time. The better I feel with the infection the better I feel with the decision to do the chemo. I know I am not changing anything. The outcome is still going to be the same, but I might get some very special moments that I would not have had otherwise.
I am strong enough now that my local H&N support group that I have been attending for the last year are coming to see me tomorrow. I am thrilled at having company that I am not related too! I have been able to get out of the house a couple of times. Hubby doesn't like the idea of me driving. But that is due to the pain meds and not my strength. I haven't fought him too hard about this. Last thing I need is a ticket or worst.
Amy,
Glad to see you on the forum. I have been wondering how you are doing. That must have been quite the infection. You have an amazing attitude and I am in total awe of you.
I hope you have many, many wonderful moments...sounds like you have fantastic family and friends!
I've got you in my prayers!!
Margaret
Amy,
Hang in there and lets hope the chemo works wonders.
Amy,
God bless you and your fighting spirit. I am so glad you are doing better and the infection has improved. Will be thinking and praying for you as you march on.
Bonnie
Hi Amy,
It's great to hear from you. I bet it will be nice to people who are not family!! I hope you have a wonderful time with them.
I love your thought...enjoy your special moments:)
xo
Amy - glad to hearing you are feeling better. I do understand about not driving but geez its good to have some freedom every now and then to do things that YOU want to do. That is why God invented Taxis!! Splurge - enjoy.
Donna
Hi Amy,
So glad to see you posting. Have a great time with your visitors. I laughed when I read your comment about non-family visitors :-) You are a very eloquent writer. Your posts inspire me everytime - you have such a bright warm outlook in spite of everything else you are experiencing.
Thinking of you.
Sending you hugs {{ }} and prayers,
Kim
Amy you are truly inspiring. I hope you have a great weekend.
Cathy
Amy
Just wanted to wish you the best. I can't imagine suffering the way you have at so young an age. You did bring a smile to my tired old face reading your carebridge journal entry about the feeding tube and the nurses not understanding that you did not need the extra hassle and indignity of syringing out your stomach contents before putting it back and then using the feeding bag. I loved your remarks about nobody making the other patients puke up their prior Cheerios. Your sense of humor is so awesome in light of all that has happened to you. I am only 8 months on the feeding tube and hate it. For what it is worth, I think you have made all the right decisions here - hard choices though they were. Words don't really cut it in situations like this, so I won't belabor it, but you are truly an inspiration.
charm
Amy,
It's been two months, how is everything?