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Choices or false belief of a control freak...

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Ok the Data is in from last week's ct pet.
1- new super clavicular lymph node 1.5 cm lower neck up close and personal to tracea .
2- mid, behind abdominal wall, 2cm mass
3-left retro peritoneal 2cm node, near aortic projection near Gastro I think.

Blood tests and ca markers just fine!

Choices:
1-do nothing, which can be reframed, as that is also doing Something.
2- Interventional Radiologist says he suceeded with last zapping and he can zap three separate ares in three week of 5 to 6 x per week Tx. This is palliative, finger in ****, not curative. Cure non existent.
3- onco says there are chemo options but wait until vital organs affected which, Thank God they are not as yet .
4- surgery is not a question!

I decided with onco, that less tumor in me is better than more as Tumors, which seem to be multiplying at monthly rate. So I'm starting 'tatooing' staging for radiation Tx today.
Hope to get to NY for my sister's youngest's wedding July 4 th.

My official age mandated retirement is end of September, asked and received extension. Very nice of hospital, my employer, to do that for me even after 26 years there, but many absences now.

By the way someone wrote extreme intervention may have hastend Linda',Bless Her Memory, end. Ca very aggressive and that was cause, but do any of you remember what her Liver intervention ? Thing it was? Liver most likely place of disease in my future.

Thanks for being there.
Please let me know if you've done this a second time too, this is mtythird or fourth recurrence depending how one counts.

Lots of payers to us all,

Sara Zipora

P.s. in our religion, Jewish, there is a 'thing' where at a serious point in an illness the name of the ill person is changed, usually a name added, so that that Angel of Death will get the 'address' wrong when it is searching. I added the name Chaya, which means life, and was our Biblical foremother's Sara, Abraham's wife's name, to my name Sara Zipora. I did it prior to first radiation and it portended well. Not generally superstitious but I always say, I'm not smart enough to scoff at the un-understandable.

Ask your Priests if you have something like this. It helped my Mind Body State and also gave me a sense of agency over this rumble tumble life the Ca has thrown us into.

Love to all,
Chaya Sara Zipora

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I love this tradition - to confuse the evil spirit/s. I had a healer tell me to make friends with "Chester" (my name for UPSC) and that Chester has come to teach me something wonderful and will stay until I learn it!! A challenging concept for me which I have tried to embrace.

But to your choice - and we all have choices. I have similar choice currently. When my scan showed several mets in lymph system, I had a CT guided biopsy followed by a tissue assay. One of my choices included starting hormone therapy (letrozole) which I have been taking for the last 3+ months. My CA125 is still rising and I will get another scan after my trip to Boston where I will see a Chinese acupuncturist and Tong Ren healer. I was surprised when my gyn/onc supported my trip instead of thinking I was crazy. He said there are many things that help. I'm planning on a clean PET scan when I return.

I think getting a less invasive treatment makes sense - spot radiation instead of systemic chemo treatment. I think you have a positive spirit. I'm working on having trust and faith and let go of fear - this has been hard. But the priest in church today talked about receiving communion and dedicating this to whatever we need so that we can live the most wonderful life each day. I asked God to lift my fear and help me live in trust.

So, dear Chaya Sara, I wish the same for you. To ask for guidance and to trust that you will receive whatever you need to live your best life. Be comfortable with your decision.

Re: Linda. She had radioactive implants in her liver (half of liver treated each time). I think this was too much for her liver to handle.

Hugs and prayers to you, Mary Ann

pakb56
Posts: 141
Joined: Jan 2012

I love reading what all of you right. We have to believe. We may not be able to determine our fate but the support, prayers, beliefs, and blessing for those we know (and some we don't) and love have been such good medicine for me.

I have found strengths. and attitudes I had no idea I was capable of of and, for that, I am profoundly greatful. I am confident in my healthcare team and want to believe they are doing what is best for me (and I do).

I look to my cards, memories of people telling me they are sending well wishes, thoughts, and prayers, my way. I believe it and that has pulled me out of so many dark spots the last 6 months.

Chaya Sara, my wishes to you for love and peace and by reading your post I can feel good energy.

MaryAnn...your posts are always inspirational to me.

Sisters of my heart....you all have a wonderful week.

my life
Posts: 5
Joined: May 2011

Sara I want to wish you well with your treatment; my prayers will be with you. I believe Linda had radioembolism tx. The plan was to destroy the new blood vessel pathways which supply blood to the tumors. There has been some success with it although not all centers offer it yet.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Rad Tx starts Wednesday.
Hugs ans warmest high regard to you all,
Chaya Sara Zipora

pakb56
Posts: 141
Joined: Jan 2012

Good luck with the start of your treatments. Best wishes for well tolerated, well received therapy.

On Wednesday I have an appointment with the radiation oncologist to discuss my course of treatment for my brain tumors. Hopefully, that will go well.

Take care,
Pat

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

May today be a harbinger of future success in zapping all the bad buggers and continue to pray and hope that the few good guys will beat out the nasties.
All the best and remember you aren't alone we're rooting for you!
Chaya Sara

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Chaya Sara,
Just now getting over chemo #2 and am sorry to read you must deal with another recurrence so soon. But i do think your choice to do spot radiation is good - i always want the bad stuff out, out, out! You definitely want to save chemo - the ravages and the potential for developing resistance - until it becomes the only choice. I did a 3 week stint of radiation for supraclavicular and axillary lymph nodes last summer and it's still keeping those fairly well subdued.
Sending positive thoughts and cyberhugs for much success and minimal side effects with this.
Annie

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