Buddhists

thanks, notself.. i have turned down all rx meds for ms for the last 20 yrs... they;re all immune suppresants, and so; as ill as i've been, they would've even added to it... i know women, (even here) where their neuro's want them back ON them, after bc... what? to open the door to reoccurence???

   it just burns me!!!anyway; i am doing a good amount of supplements those articles mentioned. alph lipoic? seems to be the best bet; my badddd dietary is red meat.. although i've cut down, and added ruffage, and fish to my diet; i just can't go vefetarian, at least not yet...

   ive been doing the european protocol for als; which is heavy in the b's, and omegas' and grapesedd , and Dim... i think thats' about it... no gaurentees, but none with the rx  als' either... thanks for thinking of me...3jays

absolutely a problem i battle constantly with. a amin problem in MS. chemo depleted it. sunlight alone doesn't keep me steady. i usually take 2000 a day subling; but they stopped it w/ current thyroid mass they found. lack thereof, is adding to my fatigue, and my hand dexterity, i'm afraid. it's so sweet of you guys to think of me...

   i too, was wondering about  viranyani.. hope she's ok...3jays

Hello, everyone,

My few days has turned into over a week...scrambling, trying to find a way to get back to asia for vassa (as you know from notself, an important part of the monastic year). And many appointments... So this year, I may be late, or may not show up at all...and am beginning to surrender to the prospect of that.

So today my oncotype results came in, and today my case was presented to a big tumor board...

...and it was a perfect example of the worldly winds in action (these are praise and blame, fame and disrepute, pleasure and pain, gain and loss). First I got the call from the doctor who presented my case to the tumore board, who said 'good news'--that the consensus of the TB was that I don't need chemo and perhaps not even hormone therapy (though there was some difference of opinion about the latter). Then, less than 10 minutes after he hung up, my oncologist called, saying the test results were in and 'bad news'...he thinks I should have chemo! Same data, different opinions.

I'll get more complete information about the test results tomorrow when I see the oncologist. All I know now is a RS of 20, but no details. But obviously, I'm not the only one who doesn't know what to do! This is strangely comforting. And what's clear is that I'll have to decide for myself.

All day, it's been percolating...the not knowing, and the consequences of making one decision or the other--or of making a wrong choice. The only thing I'm certain of is inevitable uncertainty. Of course, it's always so..but in this case, it seems that the consequences are possibly more intense than any other choice I've ever had to make in my life, and with a possible all-or-nothing result. If I choose not to do chemo, and nothing further happens, then fine. But if there's a recurrence or metastasis as a result, then...

So right now I haven't a clue what to do. I'm resting pretty easily with the uncertainty, but also feel the practical necessity of making a decision one way or the other reasonably soon.

And as a nun, I rely on the generosity of others, so need to move next week, to a place where I can spend all of vassa, if necessary. I have the blessing of the abbot of my monastery to do whatever I need to do right now, even if it means breaking vassa...and he does know how much I want ot sit rather than doing this!

So I've spent hours glued to pubmed and have a stack of papers to read...notself, I'll send you a PM query about this...

Many blessings, all...hope to revisit your vinaya question later, notself! 3Jays, you're amazing...and an inspiration. MS + BC and you don't seem to be going down the self-pity road at all. I have noe complaints.

viranyani

so good to hear from you.  I think we can all relate to having confusing bits of news.  You mention doing lots of reading.  I can relate to that.  For what its worth, I pass to you what an old and dear friend said to me when I was trying to read up on my cancer:  you cannot hope to read every paper and learn as much about your cancer as your doctor.  find a doctor, an oncologist, a surgeon, that you trust, that you feel comfortable with, that answers your questions and let them deal with the details of the medical stuff.

When I gave some thought to what she had said, i realized she was right.  All my reading and studying was for the purpose of trying to gain control over a situation that I could not control.  And even if I read every paper in the world, I still would have this stupidbreastcancer.  So I stopped the intense reading and spent more time interviewing doctors.  In my case, that meant I ran around doing all sorts of consultations.  And I ended up with a surgeon who was not the first one I saw but was in the same practice.  I found myself appologizing for wanting to change and the nurse stopped me and said "there does not have to be a reason for picking doctor b over doctor a. you need to just pick the one that makes you feel right."

If I were getting both "do chemo" and "not do chemo" from my team, I would find a third set of doctors to consult. Was the oncologist part of the tumor board?   I know when I was first diagnoised, I was told "maybe" on radiation but then when the results came back as high grade, both my oncologist and my zap doctor changed their maybes to yes.

I hope the moving is not too stressful.  If you were closer, I'm sure any of us would happily give you a bed.   Is there a monastary of your denomination that you could stay with for at least part of vassa?

Here is a link to a great book on mindfullness and illness. It is written by a woman who has a Ph.D. in nursing and teaches at Emory university. She has done research papers on the positve effect of meditation for patients with long term illness. This book is a guide. Thought this thread might enjoy.

http://www.amazon.com/s/ref=nb_sb_ss_i_0_15?url=search-alias%3Dstripbooks&field-keywords=leaves+falling+gently&sprefix=leaves+falling+

Viranyani

thank you so much for printing The little Book of Metta.  i am going to print it to study it.  I hope you are doing well, and find a way to return to Asia. Probably too late to comment on the Oncotype Score of 20 - that really is the "gray" area of whether to have chemotherapy or not, for everyone.  I hope the choice will be easier for you.

thanks again for all your informative posts.

good to see you as well, monsta mom.. still sitting?

Welcome Laurie.  I'm relatively new to this discussion board. I was diagnosed July 1st of this year.  But I felt the need to say something after I read your last post.  I believe like 3monstmama and notself said you need a caring, positive team of professional people.  For me that has made all the difference.  And things aren't always like they seem.  My pathological diagnosis after surgery was way better than my clinical diagnosis before diagnosis.

Hi Banba

Sorry you find yourself here but a big welcome. I have found all the forums to be incredibly supportive.

I'm at the beginning of my journey with cancer and meditation. I feel drawn to the teachings of Thich Nhat Hahn and have a few of his books and one of his audiobooks. He also has a few things on Youtube.

5 months down the line from my stage IV diagnosis, I feel more generally more settled in myself and I think a lot of that has to do with connecting with other women through the forums, who are in a similar position. Still having good days and bad days but doing my best to focus on my breathing and to stay in the moment.

I'll check out the Stephen Levine link - thanks.  

I hope you have some support that you can draw on to get you through the next few days. Remember, whatever happens, it's not an immediate death sentence and there are lots of women out there living with good quality of life for many years.

Let us know how you get on.

Laurie x 

Hey all. bumping us up!



It has been a hard couple of weeks. I actually went to a Sunday service and I enjoyed the practice but since then I have not gotten near my cushion though I truly truly need it. Today it was confirmed that my mother has ovarian cancer, stage IV probably with mets to lungs. I am sad by the diagnosis but sad in the way that one is when the last possible chance of something is gone. I don't have a particularly close relationship with my mother---we started off on our separate paths when I hit the age of reason or the age of the tantrum at 3-4 which she took as a personal afront. It was only when I had my own children that I realized that, despite her tales of how dreadful i was as a small child, I had actually been perfectly normal. Quite the mind blower but also a first step on the path to healthiness.



she is on the other side of the country and I am not going to her side in the hospital. Aside from 3 kids and full time work and my newly scheduled oophectomy, there is too much risk that she will be, for lack of a better term, mean. And there is nothing I can do--invaritably she does the opposite of what I propose.



My feelings appear to be very difficult for others to accept. Not surprising--they were difficult for me to accept. My initial reaction to my own thought of "I am not going" was "what kind of lame uncompassionate buddhist are you?"



It was pointed out to me that practicing compassion towards ourselves is important too. Compassion towards ourselves should not be at the bottom of the list of to-dos. I think I read somewhere in something by Thich Nhat Hahn that respecting our parents does not mean that we place ourselves in the position to be abused.



The sad fact is that for the last year I called my mother nearly every day and nearly every call, she was cruel and angry at me. She said things to me that she would never say to a friend. I would hang up feeling drained and like crawling under my desk. And yet, I kept calling because she had originally said it made her feel good to have someone to talk to. After all she lived alone and had few friends and no one to call save me. Finally I realized what I was doing was not helpful towards either of us. The fact is she lived alone out of choice---I have been trying to get her to move closer to me and her grandchildren and other family for over 4 years.



I have realized as I reflect on the situation that much of my own unhappiness and my efforts to be a better daughter stem from my own attachment to an ideal of a mother daughter relationship. Slightly over two weeks ago, she told me that she needed me to be a daughter, to be supportive. And I pointed out the supportive things I had done like the daily calls but said that what I could no longer do was be a punching bag. And she responded but thats what she needed me to be, a punching bag.



Daughters are not punching bags and as I said the words, my attachment to the relationship that never was just sort of floated away and I saw her as she is. How can a mother see a daughter as a punching bag?



She really did do the best she could. She was a very broken person. She should NOT have had children. But had she not, where would I be? Whenever she passes I will mourn her as the loss of another human life from cancer. I will see about having the monks chant for her. And I will continue to feel sorrow and empathy for those who had close relationships with her, the kind I never had. But I won't have the feelings that I would have for the loss of a mother. I lost my mother years ago. Still, I am glad that she was close to someone. If there is rebirth, I hope she has a better go the next time around.



I want to do some metta practice for her but I have to print out the stuff from notself and others.



Hope that, as we approach the winter season with all its stuff, that other people are having more calm lives.

again, notself, i want to thank you for the link... i have learned so very much abouut Metta from you.and, i continue to remain teachable there.. from a life full of anger, and strife. i now, turn to metta, and 1st for myself, as i was taught to search for, by you...

  3monstas mom: im really sorry that this whole thing with your mother has to be part of your learning journey. it was for me, years before my mom died.. we had a happeier ending, but because as i stood up, and said you won't abuse me, she withdrew from my life for 3 years, then called out of the blue, and  s  aid.. ok what do i have to do??? it was rough gping, but it did have a happier ending. im sorry your mom is so damaged, that she cannot honor you. as i see it, it has to be  a mutual respect to work with... you have my respect for all the compassion and effort you've made till now. i respect you for respecting yourself now, and i truly, wish you Metta.........3jays.