Dear all,

Thank you for all the public and private messages of love and support. I apologize for not responding personally as I've been really pressed for time. But beware, this is a long post to hopefully make up for that shortcoming.

First, an update about my sister:

Two days ago, she decided to pursue her oncologist's recommendation and continue with the third round of chemotherapy which had been put on hold. At the moment, the treatment plan is to follow this up in 2-3 weeks with radiation + chemo (cisplatine only). Her decision was in negation of the recommendation made by USC doctors who suggested that we consider ending treatments and switching into palliative care. Her oncologist made it clear in our last meeting that even though he differed with the opinion of the USC docs about ending the treatments, his prognosis was not much more positive. His logic, however, was to continue because there is still the possibility to stop the growth or even shrink it and thus buy her some time. Interesting info that surfaced a few days ago once the new radiation oncologist studied the radiation films from UCLA, where my sister received her surgery and first round of radiation: They had not given her a full course at full dose (something to question the UCLA radiation oncologist about!). Thus, in his opinion, there is still the possibility of doing another round of radiation on previously irradiated areas.

Recent positive signs:

1) In our last meeting, her oncologist mentioned that he thought one of the big growths on my sister's neck was an abssess rather than a tumor, and ordered an ultrasound which was done yesterday. We don't have the results yet, but yesterday last night the skin in that area broke and let out some fluid build up. It hadn't occurred to USC doctors that this might be the case! This goes to confirm something I've seen mentioned by others on this board: It isn't cancer till it's proven beyond doubt to be cancer.

2) She gained 3 pounds in slightly over a week bringing the total weight gained since June 25th to 5 pounds. This goes to confirm that it is possible not only to maintain but to gain weight through a careful diet, even for people who are using a PEG tube. Those of you who'd read my previous postings about this topic and have kept up with my occasionally despairing updates about her difficult struggle with chemo-induced nausea probably can imagine how elated I feel about these 5 little pounds!

3) Her spirit has picked up considerably and she is in a much more positive state of mind today than she was barely a few days ago. It was emotionally and spiritually a very difficult decision for her to submit again to the harshness and pain of treatments knowing that the odds are not necessarily in her favour. Her entire circle of family and friends shared in her burden of doubts and the uncertainty about everything except that more treatment means more pain. All we did was to declare our love for her and our readiness to support her in every way we can in whatever direction she decides to take. I'm not sure what her thought processes were, but I know that her decision is a clear manifestation of her courage, inner strength, love for the joys of life, acceptance of the inevitability of death and determination to face life and death as they come.

I would like to also share the following reflections with you as I have shared others:

My sister is a special person to many people in addition to her family. She has always been a loving, generous and inspiring person and has played a positive role in many people's lives. Following her latest CT scan results and the consultation with USC, we all plunged into a deep state of despair and grief. We were forced to consider the possibility of my sister loosing her battle and us loosing her. More than anything else, it was the knowledge of her suffering and our being witness to it that truly broke our hearts. In our discussions it became clear that we all were willing to let go of her if and when her suffering became meaningless. I need to admit how painfully difficult and frightening it was to even think this let alone to vocalize it. For most of us who are surrounded by a material culture that is misleadingly and greedily pre-occupied with artificial youth and longevity at any cost, the thought of life giving way to death is frightening and so are any thoughts of suffering and loss.

As I write these words, I have little more proof that things are going to turn positive for my sister insofar as her physical conditions are concerned. However, I am now feeling a sense of calm as are my family who take turns staying with her at the hospital round the clock, as indeed is my sister herself. Since yesterday, almost simultaneously, many of us, even including a few distant friends and family who've called to tell us this, have been feeling washed over with a positive energy and renewed hope. This may simply be explained as the pattern of ebb and flow typical of these situations. Or, we may justly think that my sister's decision to keep on fighting has temporarily relieved us of the burdensome thoughts of an imminent and painful death. These explanations may very well be true. But I'd like to think differently.

I am not a person of any particular faith and religion. Having said that, I believe in the universal principle that has permanently joined life and death, sadness and joy, light and dark so that to exist wisely means to also accept the impermanence of existence and to be content demands an acceptance of the good, the bad and of the uncertainty in between. In our last conversation before I left my sister a few nights ago, I encouraged her to try to find in the love surrounding her the courage and help she needs to live her moments one at a time and not to let fears of the uncertain future or grief for the irreversible past occupy her present. She asked me if I believed in God. I told her I did not. She asked me if I knew how she could regain her faith in the goodness of life. I told her that she is the only person who can answer this question for her because she is the only person who has lived her life, but that I also believe that there must have been a lot of goodness in her life to merit the care and love given her willingly by so many people. She asked me if I believed that there were meaning and justice in life. I told her that I believe meaning is what we bring to and make of our lives; and that justice is perhaps a topic best not be hashed lest we loose all hope at a time when so many human-made and natural disasters are bringing so much harm and ill to so many people in the world. But I also told her that so long as we try to be just and fair within our small circle of influence then there is justice in life. She asked me what I thought she should do. This was the toughest question she asked. I told her that I didn't have a clue, that she should look in herself because she's the only person who knows whether she's ready to let go or whether she's got the resources and the will to continue, but that no matter what she decides I see it as a positive move because in this she reclaims the agency she has in her life and the course it takes at this junction, this in spite of the disease and the fact that it has made her options very limited.

I think her decision to continue with treatment is a reaffirmation of her agency, come what may. My family and I have decided (with varying articulations) to cherish and celebrate my sister's reclaiming her power. We did not give her any false hopes, and we tried to leave the decision to her so that she would not feel obliged to take on anything because of our fears and wishes. I must say that leaving her alone in this while we knew the confusion and pain she was dealing with was truely difficult for us. But none of us had any answers to give her and we had decided not to lie. So she had to live and work through the question herself. And goodness knows we had to work through our questions, fears and pains. And this work continues yet.

In celebration of the goodness of life which gives us the power to continue against odds, I would like to ask you to join us in sending to everybody here and to my sister your positive energy for healing and peace. Do it in any way you believe and see best: a prayer, a random act of kindness, a message of love to someone you love who loves you back, a karmic meditation, a genuine smile. Anything done consciously as a practice of positive thought.

Be well.

Gita

Gita
Thank you for sharing so much, I have no particular belief in 'God' but I have seen the power of prayer beat doctors odds, this gave a memeber of my family 8 good years.. so each day I will pray for your sister.. yourself and the special people that are around you both at this time.. I think that you are right that your sister has taken charge of her own life again, doctors sometimes lose sight of the need to retake command of the way our lives go, good or bad we all need to choose the path we travel..when some one makes a choice for us and we consider it later to be wrong, it leaves a bitter taste behind... we need to make our own choices.. we are each one special and have a special place in the universe..
so walk in the sunshine when you can..
prayers.. love and enough hugs to share with everyone..
Helen

hi Gita,

you and your sister and family are in my thoughts and prayers.

cu,
larryb

Gita,

I'm so glad to hear about your sister's positive developments -- I'm praying that her condition will continue to improve.

Regardless of what happens, it's very clear that you have done an enormous amount to try to get her the information and care she needs so that she can be comfortable making the decisions that are necessary for her at this stage.

Cathy

Dear Gita,

I am overwhelmed by the profound love and clarity with which you express your feelings about your sister and her situation. Thank you for sharing such intimate thoughts with us.
You gave your sister an incredible gift by supporting her while allowing her to make her own decision on how to proceed.

Sometimes it sure seems like it's so unfair for such horrors to happen to such good people. But...I feel in my heart that while my Scott was fighting cancer, his soul was doing its most important work. His eventual demise was part of the eternal golden braid that is life, and I feel honored to have been a part of it.

Your sister sounds so brave and strong. The sense of calm you describe washing over everyone may surely be evidence that her soul is doing great work; that she might have more treatment options is incredible.

I will pray that you will all be bathed in the shining light of the universe's love during this time.

Christine

Hey Gita,
I will be praying for you, your sister and your family. I truly and wholly believe in God and it is what sustains my family thru this ordeal. We take comfort in knowing that God has a plan for each one of us and it's not always what we would choose. Sometimes my fear is great, but I pray harder and God does give me comfort and peace when I need it most.
Take care and God bless,
Debbie

Gita,

Thank you for your post. Please tell your sister that her courageous decision has given strenght to me specifically in dealing with my own and my parents' illness, and I know for everybody else who reads your post also.

I, like Helen, use the word prayer, although I don't always (ever) know who I am talking to. I will keep you and your family in my prayers.

Leena

Leena,
what you are describing is prayer in it's purist sense and also faith by praying to something that you cannot see, touch or hear.

thank you all!

a note of clarification: by "sending positive energy to everybody here and to my sister" i meant to indicate everybody who is on this board and not just my family. my sister is in a similar struggle as are the majority of people on OCF. though she is the one i know intimately and so she's at the centre of my world right now, everybody else here has a place in my thoughts too. and i believe we can all use positive energy.

be well.

gita

Gita,

I am deeply touched by your post. You have really addressed everything in the terms most religions and spirituality in general encompass. For some, it is our belief in one particular higher force, God, for others, it is a belief that there is a higher force, albeit karma, the Universe, etc. Regardless of our particular beliefs, it is clear from your post that our thoughts can set a certain energy into motion and great things can happen. Although, I do not believe, as some do, that our thoughts can cure cancer, I do know that we can certainly develop a resolve to continue the battle and a constitution within that allows us to march into battle.

From a more scientific perspective, I believe your post reminds all of us to seek additional opinions from the medical community until our questions have been answered to our satisifaction.

I will certainly continue to pray for your sister, you and her entire circle of family and friends.

Ed

Wow, gita. Such clarity and eloquence. Thank you for sharing and communicating things that often defy transmission. That being said, ya'all must be Irish in that a good fight seems to buoy your spirit as evidenced by your sister's recent improvement in her condition. I applaud her decision to stay in the fight and the support that those who love her provide.

My very best wishes...

-Brett

Dear Gita,

I am in awe of your command of emotion!

I think you should consider publishing your experience. I know many would benefit. It could be the ultimate gift to others facing the same decisions.

Love,
Mandi

update:

tonight she's getting the last bag of chemo... she'll be able to go home in a couple of days, hopefully... i hear she's been handling it better both physically and emotionally...

christine, i think you were right: she's doing a lot of spiritual work here... kudos to all who face challenge with strong heart... kudos also to her oncologist who is a wise doctor and genuinely cares about her well-being and considers it from multiple angles... kudos to all who give and let others give them love...

brett, we're not irish, but thank you for the compliment...

much love to you all, and healing and peace. i am keeping a/wake for positive energy...

gita

I hope your sister is doing better. I understand how much of an impact support and a positive attitude can do in a situation like this. I am writing you actually because I think my father is going through a similar situation as your sister and I am rather confused with the options that were given to us, so I thought perhaps to get another point of view from
Someone going through this. Last September my father was diagnosed with cancer in
His cheek and it had spread to 2 lymph nodes. He had them removed and went through
Radiation and yesterday we found out that the cancer has returned in the same area and is in the T1 stage. The doctors did not sound too positive and I

Unfortunately, chemo alone has not been very successful as a curative agent. What happens is even if the initial response is good, the cancer eventually develops a resistance to the chemo and starts growing again. Radiation or radiation + chemo is not an option in your father's case? Make sure you get the opinion of a multi-disciplined team from a major cancer center.

Best wishes,

-Brett

dear swati,

i got your private mail. please consider this a response to that as well.

i personally am not in the position to give any specific advice or forecast about your father. having said that, as i understand and in concurrence with brett's post, chemo will not "cure" the cancer at this stage. in fact there are no "cures" per se for cancer, but it is possible to treat cancer in such a way that it will go in remission. this is the best case scenario which often involves surgical, medical and radiation oncology combined, and its realization depends on the type and stage of cancer as well as the individual response of a patient to treatments.

with regards to your father's situation, i would imagine that similar to my sister's case, at best, chemotherapy at this stage will slow down the growth. actually, in my sister's case, the cancer grew in spite of chemo, hence our panic. in my sister's case also, surgery was not an option. in fact, even if it was medically possible, my sister would not want to undergo surgery again. her current treatment plan is to continue with radiation + chemo, with the understanding that most likely it will only buy her time, hopefully with some comfort and quality.

in other words, we were not told at any stage that her cancer was curable. it's important that you know that when the recurrence is in previously treated areas, treatment options become very limited. in my sister's case, the reason they can give her follow-up radiation is because the first time it was not given at full dose. that became apparent only after the new radiation oncologist studied the records from the previous facility. your father's case may be different.

i agree with brett that you should discuss the possibility of radiation+chemo with your father's oncologist. it's probably wise not to take "no" for an answer unless the opinion is based on your father's specific treatment records. in my experience, doctors often talk statistically and give you a general ruling. it is left up to you to ask specific questions and demand careful and individualized assessment and answers.

if after careful assessment it becomes clear to you that the risk and side-effects of treatment may outweigh the good they may do, then your father would have to make a decision on whether or not to continue treatment and what type of treatment to choose. again, in my experience, in these situations the doctors don't tell you what to do but give you a set of options and leave it up to you to decide.

also in agreement with brett, getting second opinion is crucial at this stage before you plan further action. depending on where in california you are, you may have a comprehensive cancer centre near you. you can find a list of these at:
http://cis.nci.nih.gov/fact/1_2.htm

some centres can do consultation even if the patient cannot go there directly (i believe SFU is one of them). ask them to give you a specific list of documents they need. it makes it go faster if every piece of info they *might* need is there. (i found myself working like an archivist pulling together my sister's records from different facilities.)

finally, i'm very sorry about your father's illness and the difficult times you're experiencing now. what i found in our situation when we went through this stage was that the shock, disappointment and grief were so heavy that we became focused on a loss that had not yet happened, and thus lost sight of the fact that we still had some ways to go. positive attitude by itself does not cure cancer, but it will help you open up a space for thinking about all aspects of the situation and find what is best for you. also, i am a firm believer that real healing starts with understanding and accepting what is happening in the body and releasing it of unnecessary stresses. this is a work that takes some spiritual and emotional cleansing and a shift in orientation. because of the intrusive nature and conventions of western medical approach, we are used to thinking that we have to "fight back" the disease and thus risk subjecting ourselves to treatments that may not really be helpful when we look at the whole picture. but sometimes you need to also give yourself a break and make time for reflection, regardless of what you end up doing next. this is where we were with my sister before she decided to continue with the treatments. had it not been for this period of reflection, the positive energy would not have resurfaced. there is a qualitative difference between saying positive things and being positive in how you face life. to get to the latter stage, we need to make time to reflect on the road we've come thus far. i know how difficult it is to give yourself the permission to take this kind of time under the horrible stress that you're thrown into. but keep this in mind as something to do. the time may come once you get the second opinions and have a clearer picture.

i send you, your father and your family good thoughts for healing and peace.

be well.

gita

A recurrence in the original site so soon after treatment is very serious. I think that the doctors are trying to prepare you for the worst.

I wanted to address something that Gita said about "not receiving the full dose". What that means is his sister probably received 72 cGy of radiation, which is a full dose in itself. It is typically lethal for most cancers that will respond to radiation.

The maximum dose possible is about 82 cGy total and the additional fraction (around 9 cGy) is called a "boost". Depending on what stage her tumor was originally at (and other risk factors as well) would dictate whether she gets the boost or not. Getting the full 82 cGy has risks of its own and they prefer limiting the radiation if possible.

Many times they use the additional radiation (the boost) to irradiate areas other then the tumor site itself such as lymph nodes that may be suspicious. So the actual tumor site may indeed not receive any additional radiation.

Brett is correct about chemo, especially with head and neck cancers. Like Brett also stated, if he is not being seen at a comprehensive cancer center already, I would get a second opinion from them.

I am very sorry to hear about your fathers situation.

gary,

thanks for clarification and info re radiation. this has been a mystery for me because i did not get to read her radiation treatment summary or talk to the new radiation oncologist after he looked at my sister's radiation films. i had assumed that the reason they could irradiate again was because in actuality she had only gotten 20-some out of the 35 sessions she was scheduled for. there were several cancellations because of equipment problems but they had not made up for these. so i thought she had not hit the maximum dose because of that.

also a clarification: my sister's recurrence is in two spots: a new tumor in the throat area where she had not received radiation and new growth in the surgery bed in the face and upper pallete. we were told that while radiation could help with the new tumor, it probably would not do much for the previously irradiated areas. they don't have a radiation plan yet. i'll post it when i find out.

be well.

gita

Hi Gita,
I had delays because of equipment downtime but they just added the days.

I didn't realize that your sister only completed slightly over half of her treatment protocol. 20 out of 35 is cause for questioning for sure. There must be other reasons why they apparently abandoned treatment.

Swati,

As Gita suggests, many comprehensive cancer centers will do a second opinion conultation via telephone if you ask. MD Anderson in Houston is one of the best and they did a telephone consultation with my doctor before I started treatment. I faxed pathology reports and scan results and they reviewed everything within 24 hours. I found the information on their website and told them I was on a fast schedule and they did everything immediately. In my case, I didn't want to change the schedule I was on but I wanted peace of mind.

I am sorry you are experiencing your father going through this and know now difficult it must be for you. Be sure and ask the medical team for any answers you want or need. Do not stop asking until you are satisfied you understand the answers. They will assume you know or understand when you stop asking.

Ed

Wow thank you everyone for your response, this has been a great help for me.
Tomorrow we get the PET scan done which will tell us if surgery is a possibility. Ed you mentioned MD Anderson and how they reviewed everything within 24 hours, whom exactly did you contact, I only found the

Swati,

I went to the New Patient section, filled out the self referral form and they called me the next day. I am not sure of exactly how it progressed but I remember them giving me a phone number after I faxed path reports and scan results and I was instructed to have my doctor call the doctor there. I don't know what I did with my notes but it was little effort for me to get it all done. Here is a link where I started:
http://www.mdanderson.org/Departments/headandneck/dIndex.cfm?pn=DC30E167-7545-11D4-AEC300508BDCCE3A

I hope this helps.

Ed