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#56504 - 06/08/05 12:37 AM so many questions
Mary1971 Offline
Contributing Member (25+ posts)

Registered: 06/07/05
Posts: 49
Loc: KY
I was diagnosed June 23 with tonsillar cancer stage 3. I was 26 weeks pregnant. Radiation was completed August 20. It has been almost 10 months since 70 radiation treatments. Will I ever have saliva? Can I ever eat the spicy foods again? Will the focus of dying ever "lighten up"?
Oh, the baby is fine. She is almost 9 months old and absolutely no problems from the radiation.
_________________________
Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker

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#56505 - 06/08/05 12:46 AM Re: so many questions
Mark Offline
Patient Advocate (1000+ posts)

Registered: 03/31/03
Posts: 1375
Loc: Minnesota, land of 10,000 taxe...
Congratulations Mary! Yes with time the thoughts and feelings are less and less about cancer. Saliva, maybe some, probably not ever as much as before. Spicy foods, Who cares?

Thanks for joining us.
_________________________
Mark, 14 Years +4 month survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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#56506 - 06/08/05 08:21 AM Re: so many questions
Cathy G Offline
"Above & Beyond" Member (300+ posts)

Registered: 04/19/04
Posts: 837
Loc: Newton, MA
Mary,

Welcome to this site -- I'm glad to hear your baby is healthy, and hope you continue to recover as well.

You're likely to get a range of answers to your questions from different people here, because the long-term effects on saliva tend to be influenced by the location and type of radiation and whether you've had any other treatments or medication specifically designed to preserve your salivary glands. If you can tell us a bit more about your treatment, that may help target the responses a bit.

Were you treated at a major cancer center? Did you have IMRT? Are you continuing to have regular followup visits with an oncologist to track your progress?

As to your question about the focus on dying -- I think most people here will tell you it does let up bit by bit after the first year or so. That doesn't mean you stop being vigilant about warning signs, but I'm one of many here who found a lot more to appreciate in life after cancer.

Cathy
_________________________
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989

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#56507 - 06/08/05 11:25 AM Re: so many questions
Kris Offline
Platinum Member (300+ posts)

Registered: 07/23/03
Posts: 380
Loc: Seattle WA
Mary-
Congratulations on your daughter and hitting 10 months! I am out almost 3 years from stage 4 tonsil cancer and the saliva is partially back-even forget to take a water bottle most of the time! Try reading the book "Dancing in Limbo" You'll find reference to it on this web site and you can use the Amazon link from OCF to purchase. This book REALLY helped me and it is written by an oral cancer survivor. Feelings of depression and worries of recurrence are bound to occur after your treatments have ended - especially tough is the last 2 years after treatment. With the lack of sleep and caring for a newborn plus dealing with the issues of your care you have had a lot to handle this last year! Best of luck to you - Kris
_________________________
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Every day is still a gift :-)

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#56508 - 06/10/05 01:00 AM Re: so many questions
Mary1971 Offline
Contributing Member (25+ posts)

Registered: 06/07/05
Posts: 49
Loc: KY
Thank you all for the responses.
I am not sure Cathy, if I can give you any more details. I have't a clue of what an IMRT is? I was treated at the University of KY. I had so many docs following my treatment because I was pregnant. I do follow up with an oncologist every 3 months and ENT head/neck cancer physician every 6-8 weeks.

The radiation was directed straight across to prevent any radiation to be directed toward the baby. The only thing I can remember the doc saying was he didn't want the radiation to be directed at an angle (for the baby's sake) and he wanted to protect the vocal cords and my swallowing. I had no other treatment (like 2 treatments twice a day for 7 weeks wasn't enough) besides the right tonsillectomy for biopsy. Hopefully, some of the info could help you answer my ?'s.
It is so great to have found this website. My husband is wonderful but he doesn't understand alot of my fears. I am 33 years old with 3 children so I need the emotional support from others who are experiencing this. Thank you all. Mary
_________________________
Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker

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#56509 - 06/10/05 10:01 AM Re: so many questions
Mark Offline
Patient Advocate (1000+ posts)

Registered: 03/31/03
Posts: 1375
Loc: Minnesota, land of 10,000 taxe...
Mary, The IMRT is a type of radiation therapy machine (or delivery system). If you had that type, generally you would have a better chance of recovering saliva flow and less side effects. It really dosn't matter at this point because the treatment is done and the important thing is that radiation works even if you received the non IMRT.

I too have 3 children and the special problems (and blessings) that they bring to the mix. You are in the time period in your recovery that was the most mentally taxing for me. It does get better but I don't know of any shortcuts. Knowing that there are others that have been there can help. If you have specific questions feel free to ask.
_________________________
Mark, 14 Years +4 month survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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#56510 - 06/11/05 12:00 AM Re: so many questions
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Survivorship brings with it an acute sense of our own mortality. Our culture in particular does little to prepare us for death, even though it is the true nature of our existence, that it is finite and short. An average lifespan is about 30,000 days, of which we sleep about a third of. We may try, but it is impossible to deny our mortality. Though there is wisdom in numbering our days (a common recommendation from palmists to the Bible) so to better use them in endeavors of meaning, that requires an acceptance of the ultimate destination we all head towards. This in itself requires the development of an awareness and acceptance of death. For most, including myself, this is a painful and long process to come to terms with. While there are many good books about this issue, and no philosophy can exist without coming to terms with this basic principle, I suggest that when ready to grasp and come to terms with it in a healthy manner that you read most anything by C. S. Lewis. He was a complete and committed atheist in his youth and a convert to religion as he aged. His writing from both periods explores death from both perspectives and I find this extremely useful.

One of his most interesting comments related to the emotionally painful acceptance that our time is not permanent reflects on the differences was this; The materialist's view of the universe has the attraction that when things get so bad that they become unbearable, there is always the option of suicide, and an escape from it all. In his early years before his conversion, he found the Christian universe horrific in that there was no door marked exit
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#56511 - 06/11/05 11:46 PM Re: so many questions
JAM Offline
Patient Advocate (old timer, 2000 posts)

Registered: 04/01/05
Posts: 2676
Loc: Arkansas
Brian----WOW !!!
_________________________
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:

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#56512 - 06/12/05 01:04 AM Re: so many questions
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Do not confuse a curious person's reiteration of a very elucidated and thoughtful person's ideas (C.S. Lewis), with any intellectual ability of his own. I only seach for answers, and I have none of my own making. I am a seeker by nature..... and more often than not, only discover through each exploration that I know even less than I thought I did!!!!

This issue of death is one with few answers, except the one obvious absolute. Stated by Freud, "Du bist der Natureinen tod suldig." ( Thou owest Nature a death.)
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#56513 - 06/12/05 01:10 AM Re: so many questions
netteq Offline
"Above & Beyond" Member (300+ posts)

Registered: 02/05/05
Posts: 663
Loc: Houston, Texas
Brian,

I read this to Harry because I think that you have an incredible way with words and the subject of mortality has been at the forefront around here for a while now.

I think that Harry has chosen the path of ignorance. I told him yesterday that I was envious of those who have taken the time to prepare everything for their families in order to try to make things as easy as they can be should the worst happen.

Harry seems content to leave me to figure it all out on my own. He won't even talk about death other than to say that he knows he is going to die from this cancer.

I am so lost and he is prentending like nothing is happening. I think that he (and he has said this at times) is one of those people who believes he will live forever. Even now he claims that he is going to die because of the cancer but at the same time he does nothing that would make me believe that he thinks that to be true.

I might not be saying this right and I am sorry if it seems jumbled, it is like this in my head. What I mean is that he has made no arrangements, he won't tell me what his wishes are (I think because he refuses to think about it so he doesn't really know) he had to be threatened to do a will and power of attorney, and most importantly he does nothing to make the days count. He just complains like he always has and it just breaks my heart.

I read here on the board the survivors who are living, who have taken this opportunity to brighten their lives and the lives of those they love the most. Survivors who are living, I mean really living.

And here..... Harry sometimes acts as if he is already dead.

Your response was well timed. Thanks for writing it. You are a master of words and it was good to read.

Cindy
_________________________
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!

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#56514 - 06/12/05 01:21 AM Re: so many questions
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
I find myself intellectually believing in my eventual death, after all cancer is a vehicle of how, perhaps even when, but not a function of if.... as it will come from one means or another. All the while I find my ego's belief in the permanence of my existence to be firmly rooted. That two diametrically opposed concepts can exist within me is the height of absurdity.... Thankfully this dichotomy allows me to function each day.

When I was in Vietnam I became friends with a Buddhist monk of about 18 years old. His bombed out Temple barely stood on a regular route of one of our patrols. He wore around his neck a small bone. I was curious about it, and on inquiring, he told me that it was the finger bone of his teacher who was cremated after his death. He wore it to remind himself of the transient nature of our existence. (As in live in the moment, and do not think of the past or future.) He told me that one day, one of his students would wear one of his in the same manner. At 19 myself, I was quite taken by his comfort with it all (Especially being in a place where death was all around us on a daily basis.) and envied his peace with it all. I think that almost 40 years later I still do.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#56515 - 06/12/05 02:38 AM Re: so many questions
minniea Offline
Patient Advocate (1000+ posts)

Registered: 08/02/03
Posts: 1627
Loc: va. beach
Cindy,
Harry is still pretty new to survivorship so give him a little more time. I'm sure he still feels like crap and hopefully he can start to join the world again.
Take care,
Minnie
_________________________
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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#56516 - 06/12/05 02:48 AM Re: so many questions
netteq Offline
"Above & Beyond" Member (300+ posts)

Registered: 02/05/05
Posts: 663
Loc: Houston, Texas
I fear death myself only because it is so unknown. I want to believe that life has some reason or meaning and that what I do here must have some purpose once I am gone. What bothers me is that I know the world existed long before I got here and I know it will continue long after I am gone but I have no memory of what was before. When I think back I can really only remember bits and pieces of my life up to about 12 years old. It was then that the memories began to stick and that I can even remember those times now. Most of my life before that I only know through my mom and others who knew me when I was a child.

I am resolved to the fact that I was born to die. I have to believe that what I do in between those 2 moments in time means something, has a purpose or reason for happening.

I have become a Taoist over the last several years and I understand the story that you tell of the Bhuddist monk that you met in Asia. I know that I come from something that cannot be named but that is the origin of all existence. The unnamed has no beginning or end but has just always existed and whether I am living or dead I am always a part of it. I know that the most important part of my existence is in the balance that I am able to create within my life. When things change the balance changes and sometimes I have to move in one direction or another to keep the balance.

I too look at everyday as something to be treasured and enjoyed not just endured. Even in the worst of circumstances I can find something within that keeps me grounded. I guess this is why I have not gone completely insane throughout this ordeal. But it is difficult to watch someone staring at the tree not realizing that there is an entire forest around him.

From where I came I will someday return. It is an unavoidable truth even when it is ignored. I find no comfort in knowing that I will die someday but I feel an even greater need to make each of those days count for something.

For my children I try to give memories. I take time out and we go and do things that I hope they will remember. I show them who I am so that I am not forgotten when I am gone.

The Tao says that "Life acquires meaning when we face the conflict between desires and reality". That is where we find peace and balance but ignoring the truths will only lead to wasted time.

The Tao says, "Banish uncertainty. Affirm strength. Hold resolve. Expect death."

It speaks for itself.

The following is a quote from one of my books. It explains what I understand far better than I can so I will quote it.

"Death is the opposite of time. We give death metaphors. We cloak it in meaning and make up stories about what will happen to us, but we don't really know. When a person dies, we cannot see beyond the corpse. We speculate on reincarnation or talk in terms of eternity. But death is opaque to us, a mystery. In its realm, time ceases to have meaning. All laws of physics become irrelevant.
What Dies? Is anything actually destroyed? Certainly not the body, which falls into its constituent parts of water and chemicals. That is mere transformation, not destruction. What of the mind? Does it cease to function, or does it transition to another existence? We don't know for sure, and few can come up with anything conclusive.
What dies? Nothing of the person dies in the sense that the constituent parts are totally blasted from all existence. What dies is merely the identity, the identification of a collection of parts that we called a person. Each one of us is a role, like some shaman wearing layers of robes with innumerable fetishes of meaning. Only the clothes and decoration fall. What dies is only our human meaning. There is still someone naked underneath.Once we understand who that someone is, death no longer bothers us. Nor does time."

This is how I see life and death in all it has to offer and take away. For without sadness there would be no happiness just as without an up there is no down.

Cindy
_________________________
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!

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