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