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Posted
My Mom has been fighting mouth cancer for the past year and half. Her treatment started with Chemo & Radiation, the cancer return about three months in her tonsil so they removed the tonsil, the cancer than came back in the cheek area so they scrapped it, than the cancer came back near the base of her tongue so they removed a small portion of the tongue. For the fourth time her cancer has returned and it's only been 2 months since the last surgery. She is feeling very weak! They have told her that this time she will need to have her jaw bone removed and replaced with a plate and will need 1/2 of her tongue removed. She is scared to death and doesn't want anything to do with the surgery. She is strongly considering NO FURTHER TREATMENT. Which of course scares the family! We have arranged a meeting with her ENT to again discuss this surgery but she is pretty sure she won't try it! I should mention that she is week from other health issues as well!

As her daughter what can I do to help her? What questions should we be asking her doctor? If she decides not to have the surgery what should we expect for her suffering?

I would appreciate any information or advice that any of you have. This is really been a difficult week!

Thank you in advance!

Debbie W.
Mother with Tongue Cancer
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Dear Debbie,

This is a tough one. First, please know that I am enormously sorry that your mother is experiencing such mental and physical anguish. The unfairness of having cancer recur even once is beyond reason... three or four times is nearly incomprehensible. I KNOW you are heartbroken.

I have imagined myself before in the same awful situation you now find yourself. I am sure it is nothing short of a living nightmare. My husband's base of tongue cancer is in remission (14 mos.), but I know that the odds are slim that he will remain cancer-free. All the statistics I read indicate tongue cancer has a very high rate of recurrence. Sadly your mom's case makes up part of that number... and not just once. I am mortified (and angry!) that she has suffered multiple recurrences! Your post stirred immediate and strong emotion in me. Obviously I feel profound sadness, beyond words, for your mom who has endured far more than any human being ever, ever should. And I hurt for YOU, Debbie... a loving daughter, panicked to know which way to turn, pressured to seek out real answers and options to help make the extremely difficult decisions (even though you likely do not feel near rational enough given your great mental stress)... and desperately needing your Mom to LIVE! I sense the acute fear and deeply feel your pain in my heart. Naturally, too, your precious mother's experience also makes me scared beyond words about my own husband's future. This could happen to any one of us who are living under the dark cloud of unpredictable and potentially deadly oral cancer.

I am trying to think what in this world I would do in your shoes in order to answer the specific questions from your post, but am struggling quite honestly. You ask for advice... and I wish the words would just come to me.

Here are some thoughts that keep making their way to the forefront of my brain as I ponder your situation...

If/when you think your mother has actually made the firm decision to refuse any further treatment... I believe you must, number one, respect and support that decision (as unthinkable as that probably is for you at this point)... and, second, TRY with all your power to make Mom feel comfortable and at peace about the enormously-difficult choice that she has made. I think every adult human being instinctively knows when he has come to the limits of his own wits and endurance, and must cease trying to control or battle something when it is no longer within the realm of personal power to do so. Additionally, there probably comes a point in time when the mind and body simply unite in the need to surrender... too exhausted to continue the fight. I would imagine that, after so long, the desire to be free of the continued struggle can become extremely potent and all-encompassing... especially for someone who is tired and weak, and has endured as much suffering as your mom.

As for what to ask of the doctors...
Yes, I absolutely agree that you all need to know what can be expected in terms of her suffering if she does decide to refuse the surgery. I would probably ask how quickly is the cancer likely to progress-advance without intervention... where is it likely to move next... what physical functions might become compromised as a result, and to what degree... how much physical pain might she eventually experience and what available measures-methods can be taken to relieve or reduce it.

I would also have the doctor explain as plainly and thoroughly as possible just exactly what is involved with the surgery... every aspect of it. Your mom should have all the information that is available. She should be told everything the doctor can think of about the surgical procedure of jaw bone removal/plate replacement and partial tongue removal. She should be told the risks of the surgery and everything that could occur while on the operating table. She should be told everything there is to know about realistic rehabilitation options afterwards. She should be told how the surgery might permanently affect her oral functions. She should know in what way and to what degree she may be disfigured. She should be given the names of any patient(s) (who have undergone this identical surgery by the hands of the same surgeon) that would be willing to get with your mother and honestly address her questions from the perspective of someone who has experienced it. Your mom should be able to ask them if, knowing what they do now, would they do it all over again... or not... and, if they now regret it, what are their reasons.

Lastly, I am thinking that the doctor should tell your mother what his best (and most honest) estimate might be that the surgery will increase her chances of experiencing remission for any real length of time. If he says that the cancer (if removed successfully in the operating room) is still most likely to return (soon)... then your mom may decide for certain that she would rather be spared the major surgery and simply hope to live as long as she can with her jaw and tongue intact... comfortable as possible... and hopefully able to enjoy her family to the fullest degree.

Another thought is this... If you haven't already, pull up posts/stories from people on this website who have experienced the same surgeries your mother has been offered. (One way to do this is to click on the "find" button at top of your screen and type in whatever word will bring up the subject you wish to read about.) Also, you may go out to the home page of this site and read the stories of oral cancer sufferers. One tongue cancer survival story that comes to mind is that of "Vicki Lynn". She has had multiple recurrences too and many surgeries. Upon last postings from her earlier this Spring, she is still cancer-free. She's a "tell-it-like-it-is" gal with a lot of grit and determination. You might want to print things off from this site and share with your mom too.

I put you and Mom at the very top of my prayer list and will plead to God (on your behalf) for her physical healing and mental wellbeing. If it's a miracle we need... then I'll specifically ask for that... without reservation. Debbie, again, I am so sorry you are going through all this. Please give your mom a BIG HUG from Melanie in Virginia!

From my heart,

Melanie

This message has been edited. Last edited by: Melanie,
 
Posts: 186 | Location: Bedford, Virginia - U.S.A. | Registered: 08 March 2006Reply With QuoteReport This Post
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Good Evening Debbie,
It is more than twenty four hours since your posting and no one has answered.Please do not see this as being a case that no one cares.I am sure that a number of members have started to make a reply and given up because it is difficult to know what to say, maybe the right words have not been invented yet.This is my third attempt and I still have nothing of real substance to offer because your problem is a very personal thing between your mother and her immediate family.
If I was in your position I would not try to push my preference,gentle steering would be the order of the day,but I am not in your position.
Before you see the consultant write down all the questions which you feel you should ask,write them down now as they float through your mind,it does not matter how trivial the detail may seem, if you want an answer ask the question. No one will gainsay you for asking a question "everyone should know the answer to"
The road goes two ways,treament or no treatment. devide your questions into these two categories, most of them will begin with "What if?"
Don't let your mother's general state of health influence your thinking, the medical team will be well aware of the problems and will take this into account when deciding what course of action to recommend.
I wish I could be of some help ,Debbie, I really do.If you have any specific questions you would like to post please go ahead, as likely as not someone will know the answer.
I always sign off with the same words,it is worth a try.
Keep Smiling Razzer
John
 
Posts: 490 | Location: Mirfield,West Yorks. | Registered: 13 October 2004Reply With QuoteReport This Post
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I see that Melanie stepped in whilst I was typing,something which I do very slowly .
KS Razzer
J
 
Posts: 490 | Location: Mirfield,West Yorks. | Registered: 13 October 2004Reply With QuoteReport This Post
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Melanie,

thank you so much for your kind words. I can't say enough how much it means to me to have someone out there that cares enough to give there time to help us.

My Mom is one of the strongest ladies I know. She has always put us first and even now finds herself worry more about us. Feeling that she is being selfish and that she can't stand to see the pain that she is causing us. We are trying with all of our might to respect her decision. It's so hard since they are still saying that it's treatable. The quality of life after the surgery is her main concern and she wants to be able to die with dignity. She keeps saying that over and over! As you can tell she is a VERY proud woman.

I have recently lost a 35 year old friend and father of a 2 & 4 year old to stomach & liver cancer and he was told straight out that he would not make it so that was a little easier to accept.

My Mom is not only our Mom but she is our best friend. We are as close as any family could be. I have three sisters and we are 5 years apart. My Mom is the best grandma possible to her 7 grand kids so it's a lot for us to swallow.

I called her ENT and asked to set up a consultation so that we could get some clear answers on her options. He couldn't even get us in until June 20th. My Mom lives every day thinking that she is dying. She is making her arrangements and getting us prepared. But yet she will cry and look at me and say that she doesn't want to die. As her youngest daughter I don't know what to do for her. I want to take away the physical and mental pain of the past year and half and yet I can't bear the thought of the future.

We have since my first posting contact a Cancer Center and they have agreed to see us on Friday. Mom has agreed to meet with them and listen to what they have to say but she said she is not making any promises. The surgery is so scary for her. She has made it threw each one with each one getting harder and harder. They assured us with the last one that they got all the cancer so she went and got dentures fitted and was so excited with the thought of having teeth again and maybe being able to eat again. The same day she went to pick up her teeth she went in to get the pet scan results that we had to beg for. They told us there was no reason to need one so soon and we said but she is in so much pain and it's getting worse instead of better! Sure enough - the blow was more than that poor woman could stand. She is now so negative and has no respect for the doctor that has her life in his hands and can't even get her in for several weeks to discuss her future!

Again, I thank you so much for your prayers and kind words. I have forwarded Vicki Lynn's story to my Mom and sisters to read. She is a very strong lady! I was hoping and still am that Vicki Lynn's story would give my Mom some hope! My Mom is 63 years old and has very bad arthritis and asthma issues that make her fight very hard. She also doesn't tolerate pain medications well. She is allergic to a lot of them so keeping her comfortable is a complete challenge!

I'm sorry to keep rampling! Thanks again!

Debbie W.
37 yrs. old / Daugther of Karen
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Thank you John - You did great! I can't always find the words myself. I have promised my Mom that I will not try to convince her to do something she doesn't feel she can do. My sisters on the other hand are struggling with this more than I.

I have promised myself a long time ago that this is not my decision to make and will not take away her dignity when she finally makes the decision. I held her hand the other day and said that I would be by her side either way. Whether it be to fight for the surgery or let god take her health in his hands. It was the hardest thing I have ever done. Than to go home to my two kids 3 & 6 who are way too young to understand what we are all going threw. It's a very difficult time.

Thank you again for your thoughts and words (slow typing or not) ha ha.

I really appreciate your time.

Debbie W.


Debbie W
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Hi again sweetie.

Thought I'd quickly check the board once more (before going out of town for a couple of days) because I just had a feeling there might be a quick response from you. I know how desperately you need answers and hope. I am very glad that you have reached out to us on this forum.

From your last post, it is apparent that mom has many wonderful qualities and children who adore her. What a priceless gift to be so close as a family. I am blessed that way as well.

After the upcoming medical consultations, information-gathering, family discussions, and mom's own private soul-searching... If it does come down to accepting the decision that you and your sisters so dread (understandably!), it will be a bitter, but necessary pill for you all to swallow... that's for certain. In essence it will be physicians stepping aside and family letting nature take its course... which is gut-wrenching, there is no mistake about it.

You write that doctors describe mom as still "treatable". Now I see the full scope of your dilemma and frustration. I'm sure you feel, as long as there's a glimmer of hope, nearly anything is worth a try. I, too, would most likely be urging Mom to keep fighting, but certainly do not know enough about her to say for certain. It's easy for others to say "Fight!" when not walking in her shoes.

You have done all that you can for the timebeing... so far as setting up the consultations. As for communications with your Mom, my only thoughts are... You certainly cannot lie to her and say that you are okay with a decision to refuse further treatment. It's just not the way you feel. So, I think you did the right thing in telling her that you'll be by her side either way. I am sure those words gave her comfort, although she probably knew it in her heart anyway.

Unless something is said during one of the consultations that makes a difference in your mom's thinking (and it very well might!), it sounds as though Mom may be more afraid of the surgery and its aftermath than of dying itself. Doesn't sound possible for those of us who don't know her pain, but to Mom it may be reality. So far it seems that the poor quality of life that she expects will follow salvage surgery is just totally unacceptable in her view. Or... perhaps she is so completely overwhelmed with fear right now that nothing is clear at this point. Fear can 'cripple' us mentally, that's for sure. Maybe the meetings with physicians will help with her thought processes. It may change her entire perspective.

If doctors think she is "treatable", then I certainly hope and pray that she will find the strength to go on (with surgery, recovery and beyond). If she is truly at the end of her inner resources, then I pray that YOU will find the strength to go on (with helping to enrich whatever time she has remaining, voicing your devotion to her, and creating lasting memories).

Having said that... There is STILL hope, Debbie. Do be getting all your "ducks in a row" for the consultations. Be ready! Then fire off question after question and urge Mom to do the same.

I'll check for upcoming posts when I return home on Thursday or Friday. I'll be thinking of you!

FMH,

Melanie

This message has been edited. Last edited by: Melanie,
 
Posts: 186 | Location: Bedford, Virginia - U.S.A. | Registered: 08 March 2006Reply With QuoteReport This Post
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Melanie,
Just wanted to thank you so much for your kind and thoughtful words. I read your message to my Mom and she couldn't believe that there was a stranger out there that cared so much!

She has her first appoitment at the Midwest Regional Cancer Center in Zion, IL and they were wonderful!

She has some more tests being done today with consultations set up for Tuesday and Wednesday. It would seem as of now that they are also going to suggest the Radical Neck Dissection. As you know from my previous post she is to date refusing this procedure.

It's so hard because a part of me wants her to at least try it and the other part of me doesn't want to see her go threw something like that.

Again, thank you so much for your time & prayers.

I will post another message after Wednesdays visit.


Debbie W
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Debbie,

I have little to add to Melanie and John's words save that I feel for you all. My own wife has told me quite categorically that if she develops cancer, she will refuse invasive/surgical treatment. I can only relate to this situation. I feel that my wife will know the consequence of her actions, I would pray that she would fight, but could not condemn her for choosing her own course. She witnessed her Dad and Mum progress through lung and bone cancer respectively, Dad took surgical options Mum did not. Mum predicatably died before Dad although she was diagnosed a year later. Our bodies are our property and not the responsibility of anyone but us. It is cruel to suggest to a patient that he/she is being selfish by refusing treatment, this is their life and we all must pass on sooner or later. The quality of life remaining post more treatment is what the family should be considering with Mum she has already been through far more than most of us could reasonably be expected to cope with.

Pain management and palliative care is of a quality today that is far in excess of the times when my mother and father in laws succumbed and Hendry suffered but for the price of that suffering was granted two extra years of life which until the last 3 or 4 weeks was of a quality that saw him out of bed and doing what he wanted to do with whom he wanted to do it with. Mum on the other hand would have been incapacitated and bed ridden for months as a result of treatment rather than the two weeks she actually endured at the end in the loving care of her daughter, husband and family at home, not in a ward.

At the end of the day it is a decision only we can make for ourselves, and we must be given the dignity to do that and be supported in our decision and not made to feel guilty because our family is hurting at the result. The emotional pain of teh family can only be derred not denied and cannot be equated with the lost quality of life for the patient, simply waiting to die. The ENT people will inform your Mum of what the surgery could do for her, we all know the consequences of not taking treatment.

I think your Mum is extremely courageous and wholly selfless in her actions can you imagine watching your Mum die by degrees, while being subjected to painful and disfiguring procedures??? How would you feel if you had "insisted" that she bear such trauma for comfort of delaying your personal grief.

May God bless you and be with you all and I pray that you know the strength of His love as you all face the future andthe complex and difficult decisions to be made.

Regards, Alan
 
Posts: 205 | Location: Inverurie | Registered: 02 March 2006Reply With QuoteReport This Post
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Dear Debbie,

It was good to see a post by you this afternoon. You and your Mom have been on my mind a lot since last update.

DWR (Alan) shared some powerful truths in his posting. I'm glad he also responded because it's good to have multiple perspectives about a topic so sensitive. I would like to see other members share their thoughts as well. Plus you need all the support you can get.

(Brenda Brady... If you are reading this, I have found your perspectives on difficult topics to be particularly objective and refreshingly sensible, simple, and straightforward. Any wisdoms to add for Debbie's benefit today based on your experiences?)

Debbie, I'm glad that you found the staff at the Ill. cancer center to be "wonderful". That helps a lot when it counts most. I'll be anxious to know what the next consultations bring about. The radical neck dissection was not done in my Danny's case. Most all I know about it has been learned via this website. If any member reading this has been through the RND... (Tony K., others?)... Please share your experience with Debbie and maybe she'll have some specific questions that you might be able to address.

I'm honored (and humbled) to know that your mom feels my support (and that of all the members of this special place). I do care deeply about anyone suffering the oral cancers and feel their pain from the perspective of someone who witnessed her own beloved husband's brave struggle with this life-altering disease. When I am able to reach out to others, it brings healing to my own heart and perhaps helps me to make some sense out of Danny's journey and why God "chose" us for such a challenge as cancer.

I wish many tender, quiet, and special moments between you and your mother. Cancer cannot take that away, not now, not ever. Twelve years ago I lost my own mother (when I was thirty), and the love we shared is still tangible today. Every time I close my eyes and see her sweet face, we still share our special moments. I sense her presence strongly. She never really left me. Her soul wraps me like a warm blanket whenever I need it most. My Dad's does too... He died four years after mom (also cancer).

I will look for your next posting and continue to pray that you will have understanding, clarity of mind, peace in your heart, and quality time with Mom and family.

FMH,

Melanie

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Posts: 186 | Location: Bedford, Virginia - U.S.A. | Registered: 08 March 2006Reply With QuoteReport This Post
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We had our consultations yesterday with the Ongologists and the Plastic & reconstructive surgeon at the Cancer Center. They were absolutely wonderful! I can honestly say that we have never meet doctors like them in this entire processes! They all agree that the area of concern is a golf ball sized tumor at the base of her tongue. All other areas have checked out good! (thank god)

The Ongologists seemed to know right away that this was not treated agressively enough in the beginning. My Mom was in treatment for her arthritis at the time she was diagnosised with the cancer. They stopped this treatment right away but we just learned from this Ongologist is that my Mom was being treated with a drug they use in Chemo. he said that if these cancers cells were able to live threw this drug than they would have had to have alot more chemo than they treated her with to kill these aggressive cells.

He feels that he can get 99.99% of the cells with chemo but he said this will obviously not cure her cancer since there will be some million cancer cells left. He wants us to meet with the Radiation doctor to see if they can radiate her again without killing her jaw bone or damage the tissue too much.

The surgeon thought that he would be able to remove 1/2 of her tongue and leave in the jaw bone. He didn't think a radical was necessary at this time. He said the lymph nodes were not affected at this time. He wants to re-evaluate her after the chemo has had a chance to shrink the tumor.

My Mom still feels at this point that she will not have her tongue removed. She will allow chemo and is started that today. They told her that no treatment is not an option. They told her that her pain would be so unbearable and that it would make her golfball sized tumor feel like a canker sore.

At these point they know for sure the can prelong her life and at least control her suffering until she has some time to decide what she wants to try next.

Thank you all so much for your support. This has been a very long week.


Debbie W
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Dear Debbie I have just caught up with the above posts and do feel great empathy with your Mum in what she has to face. She has now come to her own decision in agreeing to have Chemo and we all pray that this will shrink the tumour and give her some relief from that dreadful pain.

John, Melanie and DWR have all offered an enormous amount of love, advice, support and common sense and I can't really offer or add any more. Except to say that I do know how your Mum feels when she wants to refuse any more intervention on the one hand but, like me, when she is surrounded by a loving and supportive family, feels she must take all that is on offer to rid herself of this terrible disease and reclaim her place in the heart of her family.

In my case most of the decisions were made for me. Right from the very beginning when I was first diagnosed the medical team told me what was going to happen ....a) I would be admitted to hospital for a peg (feeding)tube fitting to my tummy; b) a few days later I would undergo surgery to have half my jawbone removed and replaced with bone from my leg; c) half my tongue would be removed and replaced with a 'flap' from my forearm and d) I would have a radical neck disection - b,c and d happening all at the same time of course! At no time was I given a choice. I must admit that the pain was so bad that the operation couldn't come fast enough.

Naturally it took a few weeks, if not months, to recover enough to start to feel human again and, I needed an army of people to teach me to swallow, speak, excercise my neck/arm/leg plus advice on diet/medication blah blah blah. My husband and family just loved and supported me every step of the way.

I refused radiotherapy, well in fact I was told it wouldn't be effective on my type of cancer. Unfortunately the cancer came back on the other side of my jaw and I had the operation repeated 16 months later (not taking any more tongue). I recovered much quicker this time. That was July last year.

I try to have a very positive attitude and, apart from living on a pureed diet, have managed to reclaim most of my 'old' lifestyle. I have just recently returned to working as a part-time voluteer in a local charity shop (I come home laden down with all sorts of 'finds' - my husband would say 'junk'!)

I learnt this week that I am going to be a Grandma for the first time so all the more reason to be determined to hang around for a good while yet!!

Many congratulations to Melanie and Danny on their wonderful news. I'll be asking for advice from you in a few months' time!

If I can help in answering any questions your Mum might have Debbie then I would be delighted to do so. Meantime, I send you and your Mum my love and prayers and hope that whatever she decides to do will be the right course of action for her and, most importantly, she is blessed with peace of mind. With love Bx
 
Posts: 177 | Location: Whitley Bay, UK | Registered: 11 September 2005Reply With QuoteReport This Post
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Yes, dear lady, you and Mom certainly have had a long week! I well know how taxing and mind-boggling it can be for the caregiver (who also has her/his own life too... that essentially gets put on hold... save the things that you absolutely must "drag around" and make yourself do out of necessity... when you'd rather just drop in your tracks).

Although you are still obviously overwhelmed and scared... and filled with dread... and TIRED... I do believe there is perhaps a shred of relief to be detected between your lines. Even though there are yet many unknowns... I sense that you are relieved and grateful to have found a good medical team at this new facility... and also relieved that at least some kind of reasonable "plan" seems to be gelling out that may be tolerable to Mom and which should buy some valuable time.

So now's the time to pray unceasingly that the chemo will "play Hell" with some cancer cells and get this tumor going in the opposite direction. By the way, my Danny was treated quite aggressively with the chemo (and the radiation). He received two different types of chemo... 5FU and Cisplatin... four separate weeks of it, in hospital, around the clock... scheduled intermittently throughout the 7 or 8 weeks of radiotherapy. (Many members on this site also received those same chemo drugs.) Do you know what type of chemo your Mom is receiving?

I do hope your mom will be able to receive more radiotherapy without tissue/bone necrosis because radiation is known to work best on the tongue tumors, moreso than chemo. If not, we'll take the chemo... and keep the faith!

It is quite good news that your Mom's nodes are not involved, so the cancer is not travelling elsewhere via the "lymph express". As we TRY to count blessings... that's certainly one to figure in for sure. Another is that the doc has ruled out a RND, at least for now.

Deb, all you can do is BELIEVE that the chemo is going to be highly-effective and, if the tumor is not reduced (or eliminated!), at least seriously "cripple" and keep it from getting any larger. Must say I cringed upon reading the word "golfball". Yeah, that's big... but God is much bigger (and more powerful) than that SOB-tumor will ever hope to be!

Today, there are at least a few positives... Stay focused on them Debbie. I shall do the same and continue praying for God's mercy.

Do not feel as though you must "answer" this email. Just get your rest whenever possible and post a note only when you need us or perhaps feel like "venting".

Hugs for your mom... and YOU! xoxoxoxoxoxox

FMH,

Melanie
 
Posts: 186 | Location: Bedford, Virginia - U.S.A. | Registered: 08 March 2006Reply With QuoteReport This Post
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Brenda,

Thank you so much for your reply. It is so great to have this access to such wonderful supporting people like you, Melanie and John. It has helped me so much!

First of all, Congradulations on the news about being a Grandmother. HOW WONDERFUL! My Mom tells me that the only thing that is close to it is being a Mother! My Mom's grandkids have certainly played a hugh role in the fight that she has had... She loves them with everything she is.....

I must admit that my struggles are kind of surprising to me. My first reaction was to just be supportive and than once I swallowed the news, I wanted her to keep fighting. I'm not sure were that came from. If it was the fact that I have two young children that I want them to get to know just how wonderful there grandma is and how much she loves them or if it was just me being selfish. I like to think that I am not such a person but maybe when we are so afraid to loose someone so special to us anything is possible!

My Mom is just one of the most wonderful people anyone could ever meet. Here she was at the cancer center with the information that her cancer had returned for the fourth time and she was the one supporting these other people that were there for the first time. She has always been there for my sisters and I and has basically devoted her entire life to us and now the grandkids.

Before going to the Cancer Treatment Center of America she was very negative and didn't really want to keep fighting. I think she went there just for us kids! Which I am very glad she did. We were never given any other options of chemo, my Mom's ENT just simply said surgery or they would keep her comfortable. She too pretty much left her care in the doctors hands. She is kind of old school you might say and she just doesn't question them. But now to hear that this wasn't properly treated from the beginning doesn't really make any of us feel any better. It's frustrating and puts you in a position of not trusting people. It's so scarey!

I am just so thankful for the internet and you wonderful people that choose to make a difference. I promised myself yesterday as I was leaving the center that I too want to make a difference. I have not figured out just how I will do this but I hope to find away to touch those that are in my shoes.

Thank God for all of you and I wish you the best of luck in your own lifes!

I will keep you all posted on the Chemo and any other treatments!


Debbie W
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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Hi Melanie,

My Mom received 8 weeks of Cisplatin and 40 TX of radiation in the begining of her treatment. The Ongologist at that time said her dose of Cisplatin was a "baby" dose. We today wonder Why? Than we were so thankful that this was all she needed and wouldn't get too sick. The Ongologists we saw yesterday said it was not nearly enough and that Cisplatin alone is not a good choice for this type of cancer. I unfortunately don't recall the name of the Chemo he will be starting with today and I don't have my notebook with me. He did say that she will need to come in once every two weeks.

We have been told by her doctors in the past that she has had her life time of radiation so we are not sure what the new doctor will say but we are trying to be positive.

You are absolutely right that I do feel a since of relief. Mostly because we now have a team of doctors that cares about my Mom and her pain. There not just worried about their next surgery! They have already showed us more compassion in the past five days than we have had from her prior ENT who has preformed three surgeries on her. They were extremely detailed and took all the time necessary to answer all of our questions. Mind you, all three of my sisters were there as well as my father. In the past we have had caregivers groan at having so many people their but this place was so wonderful. They would simply bring in more chairs or bring us to a bigger room. One doctor even came down a floor to us because his exam room was too small.

I just can't say enough about the treatment and consideration! It was simply amazing and as you can tell has touched me deeply!

I better try to get back to work. Thank you all so much and I will keep checking for your wonderful and much appreciated messages.

God Bless you all!


Debbie W
 
Posts: 16 | Location: Wisconsin | Registered: 12 June 2006Reply With QuoteReport This Post
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