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5 Years Out, 5 Lessons Learned

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DonnaSibu View Drop Down
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    Posted: Jan 11 2012 at 12:18am
Guess this is my "kiss the wall" moment--where you can come back in 5 years to extend love and best wishes to everyone currently dealing with tnbc and offer unsolicited advice. :)

5 Years Out, 5 Lessons Learned

 

1.    There’s no wrong way to “do cancer”

A beautiful lesson taught to me by my oldest sister Mary K., who did cancer with dignity, grace and heartfelt seeking, just as she lived her life.  Love and miss you much!

2.    Take it where you can get it

The person who really comes through for you, picking up your kids up from school and taking you for a makeover after your last radiation treatment, may turn out to be a neighbor who you did not even know so well before. The Christmas package you receive with 23 handmade outfits for your little girl’s AG doll may have been sent from a woman you have only met online, but who has become the first person with whom you want to chat late at night as the tears are pouring out. The in-laws with the fewest financial resources may all pitch in to send airline tickets and keep your kids for three months while you are just too tired to make it through the rest of treatment.

Soak in every gesture of love and support you receive until you are grinning with gratitude. It will get you through that moment you find yourself bald, grey-hued and chestless, and open an envelope with a check from your sister—carefully inserted inside a 5-page letter detailing everything that is truly wrong with you and how you seriously need to change. 

 

3.    YOU are (and should be) your patient care coordinator

No one has nearly as much of a vested interest in this thing as you do, so don’t expect them to. Your oncologist will never Face Time your PM and Naturopath late at night because he’s wondering about your D3 levels after chemo. You are the best person to gather information, find support, listen to your body and trust your intuition.


4.    Why fight a friend?

I avoid using the term “survivor” and do not consider myself a “warrior in the battle against cancer.” Cancer was my friend. Had I tried to silence her and slay her without listening to the truths she came to reveal, the whole thing may have been for naught.

Cancer is not the friend you meet for lunch and mojitos.  Rather, she is the one friend in the world who loves you so thoroughly, she agrees to take on the gruesome task of holding your feet to the fire until you decide.

In my case, Cancer was the one to break the news that I would no longer be allowed to continue living in this world while choosing a lonely, unfulfilling marriage.  She shook my shoulders until I realized that certain family members just really don’t like me and never will, so why bother. (This is just a sampling. She had many other similarly uncomfortable truths on her sacred agenda for me.)

Only after listening to and slowly starting to process those truths, did the Cancer blessings start rolling in…

I now have the pleasure of raising my children alongside the gentle, philosophical, creative man who may be a soul mate and best friend, but was never meant to be my life partner—and will soon be my beloved ex. 

I can bless my family members on their life paths, knowing that their values and world view are simply very different from mine. We will likely never come to offer each other the respect and admiration we seem to all desperately seek from one another. Maybe we’ll all tackle those issues in our next lifetime together. I can live with that.

5.    The difference between your doctor and God is that God doesn’t believe He’s a doctor

Surgery, chemo and radiation may (or may not) save your life, but they do not come without significant long-term side effects. It is not to the medical establishment’s benefit to tell you that, or to study harmful side effects.  

Nobel prizes should be given to:

a) Suzanne Somers for “discovering” bio-identical hormone therapy (BHRT)

b) Any doctor who can put his ego aside long enough to mention to his patients that after being thrust into chemo-pause and having most of your hormone-producing glands surgically removed (through hysterectomy /oopherectomy), you might want to consider BHRT to replace some of those magic juices that your body needs to function.

Gifted Healers can be found throughout traditional medicine and the myriad alternative treatments available. I believe that an open mind and heart lead us to the right and perfect Healers.

 

The way I “did cancer” left no stone unturned. Here is a list of very special souls whose collective gifts, efforts and love helped deliver me to my 5 year mark. To each, I am eternally grateful: Surgeon, Oncologist, Radiologist, Family, Friends, Nurses, Plastic Surgeon, Acupuncturist, TNBC Foundation, Unity Church, Nutritionist, Cranio-sacral Therapist, Shaman, Psychic, BHRT Nurse, Massage Therapist, Family Soul-Constellation Therapist and whatever Spirit Guides, Angels or Ancestors are pulling for me from the Other Side. THANK YOU ALL. 

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Autumn10182001 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2012 at 9:11am
Nicely done.. very meaningful.. thank you for sharing..
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2012 at 11:57am
Powerful words, thank you!
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2012 at 12:54pm
Donna, I love it!   Congratulations on living well and thinking well and just plain old living.
love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2012 at 7:43pm
I applaud your spirit and zeal.  I am inspired by your five years, congrats to you.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2012 at 9:38pm
Thanks for reminding us that there many 5 year survivors out there who may not be nearly so visible on the forums.

David
Co-survivor
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VickieF Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2012 at 9:03am
You made me cry.... in a good wayHug
The Will of God will never lead you where the Grace of God wont protect you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2012 at 9:18am
Thank you for your words.  They are some of the words that are becoming my truths as I walk along this path. 
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 12:22pm
This is such a beautiful post made me cry in a good way and it gave me alot of hope.
Thankyou,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DonnaSibu Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 12:54pm
Thanks to all who responded to my post.

btw, I am BRCA1+ and was as dangerously close to stage iv as you can get (there was much discussion actually about whether I was stage iii or iv) and I made it to the 5 year mark. :) 

I did all the traditional stuff (double mast., chemo, rads, hyster/oopher) but there were still many things lighting up on those scans a year later, so I went all out with alternative methods and within 3-6 months, everything had disappeared!! 

Much love to everyone who is in the middle of it all right now. There is life after tnbc!!!! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 1:21pm
Congratulations Donna on 5 years. That is a big one. That is just wonderful. I wish you a very long, happy, HEALTHY life.
Janet
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 3:37pm
Donna,  what all alternatives have you done ?  do you mind sharing ?
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 4:45pm
Donna,

Thank you so much for sharing your thoughts.
Think you realize how helpful and hopeful it is to hear from people like you.
Thank you a million for taking the time to post.

You shared so much already.   I hesitate to ask for more of your thoughts.
So, only if you feel comfortable and have the time to respond, will ask the following:

You said:
"You are the best person to gather information, find support, listen to your body and trust your intuition."
Would you be be able to write a little more on the....listen to your body and trust your intuition."
There is so much "research"info out there and yet there is so much that is still unknown in the real
clinical setting. It is so difficult to make decisions when there's many questions about TNBC that
the answers are not yet known..

Were there any affirmations that you found helpful?

Lastly, there are TNBC forums on chemo versus surgery first and what to do about more chemo if there
was residual disease (if chemo was done before surgery) and radiation.
        Was your surgery first?
                      (If surgery first, then there is no question on residual disease.)
        Which chemo did you have?
        If chemo first, then surgery, did you have residual disease?
                                       If yes, did you do more chemo and which additional chemo?)
        Radiation - Do you remember if you had chest wall plus all regional nodes (axillary, supraclavicular
                             and internal mammary nodes) or which ones you had in treatment field?

With many positive, healthy and grateful wishes to you,

Grateful for today.....................Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DonnaSibu Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2012 at 6:31pm
Wow, Judy, I feel so flattered that anyone even read my post, much less that being a 5 year survivor somehow puts me into the category of someone whose musings and opinions are valued! lol 

I am sure there are MANY MANY 5, 10, 20 year survivors out there! Many may not have ever been dx "triple negative" as that is a more recent development (I have a cousin who is 13 years out now, whom I believe was probably tn but never knew it, cause they didn't used to test that third "n"). 

So for the easy questions--I had surgery followed by T-A-C chemo and one month of rads. I'm sure they radiated both the chest wall and nodes (as I had 18 nodes infected/taken out), but not sure on the specifics. 

As to the larger issue of trusting your body and intuition, that is a bigger one, right? 

This is simply what I have come to believe, observe and know in my heart. 

1. Our bodies have a powerful and innate ability to heal themselves. If we give them the opportunity. They are probably even be so smart as to know to round up the cancerous cells in our bodies and quarantine them into a tumor with a membrane around them, as to protect us in the first place. 

2. I'm not advocating for no Western Medicine, just saying to be more realistic about what it can and can't do for us. The question of trusting your intuition can answer questions as small as "Should I just skip radiation today? I'm so tired and just don't feel like going in." (I did--probably 3-5 times--and the sky didn't fall, to "Should I have chemo at all?" (I did, and though I wish I had not been so rushed and pressured into it, I think that ultimately, it was the right one for me. 

3. There were many discussions surrounding chemo, surgery, etc., five years ago as well. It was my experience that on this board (and "out there" in the real world), those who questioned what was being billed as traditional wisdom, were often marginalized, put down or even ridiculed. Everyone seeks out different information and processes the information they are exposed to differently. However, I will offer one example that was going on at the time. There was a new "wonder drug" being clinically tried at that time and many of the members of this board were jumping on the bandwagon to be part of that clinical trial. Shortly after it began, we started hearing many complaints, from less severe to quite serious, from people in the trial. There were any number of theories as to why these people were experiencing these problems--and few had to do with the possibility of it being the "wonder drug." There was what I perceived as an almost eerie defense of this drug and questioning of anyone who questioned it. Personally, I was not surprised to read that the FDA has recently pulled the drug and stopped all clinical trials due to a myriad of serious problems. (You guessed it, Avastin!).

3. I know it makes me kinda Church of Oprah-like, but what came to resonate clearly with me, was that disease starts with an imbalance in our vibrational fields "out there" such as emotional sadness, frustration, being raised with a religious doctrine in which one never really believed, etc., and works its way to the body. One gifted healer once advised me that she would help me with the "out there" stuff, but that since it had arrived to the physical, there was nothing at all wrong with attacking it on that front first, using physical medicine, etc. 

I know all of these viewpoints can be controversial and seem like blaming the victim. In fact, some heinous person once told my sister that since she wasn't getting better, she must not be meditating correctly! My viewpoint may not ring true for everyone, but it did for me. And it allowed me to seek out those who were able to help me heal things at a higher level in addition to the physical. 

4. Last but not least (and excuse the BOOK I've written here!), I really believe that we were given more honest, realistic information regarding: a) the true, long-term side-effects of surgery, chemo and radiation including lost brain function, physical problems, etc.;  b) the actual, relatively low success rates of some of these modalities; and c) shone a spotlight or studied the many, many success stories of people who chose not to undergo one or more, that we might re-evaluate the "traditional wisdom" our doctors are feeding us. 

Again, much love and blessings to everyone!!! 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2012 at 9:36pm
Donna,

Thank you so much for sharing your thoughts even more.   Much appreciated.
Think you said it clearly in your first post....there's no wrong way to do cancer.
One searches and finds the best way for oneself.

Think I posted my questions before you had a chance to see Autumns' question:
      what all alternatives have you done ? do you mind sharing

Thanks again.

With many positive, healthy and grateful wishes to you,

Grateful for today.....................Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DonnaSibu Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2012 at 11:05pm
Thanks, Judy! 

Oh, sorry, Autumn, I missed your question. 

I did it ALL lol. 

During chemo, I found acupuncture very helpful, as well as afterward to help get rid of all those toxins. 

I worked with a therapist throughout, who happened to be clairvoyant and often would bring in loving messages from my grandmother on the other side. :) 

I tried my best to do the whole no sugar, organic, no white foods thing...with limited success. Still struggle with that. Same with yoga and meditation. I believe in it, just don't do it as often as I'd like. 

I had all the metal fillings taken out of my mouth and replaced with white ones. 

I bathed in healing thermal waters in the Costa Rican jungle. 

The woman who I only half jokingly introduce as "the person who cured my cancer" is a gifted healer who has studied many disciplines: massage, craniosacral therapy, Ancient and Earth medicines with the Shamans in South America and the U.S. Between the time my scans came back like a Christmas tree, and 6 months later when there was almost nothing there, she was the only person I saw. I did no medical treatment at all during that time. (Here's her website if anyone's interested: www.chacarunahealing.org). 

Last but not least, as I started to come out of the medical stuff, I did a lot of work that I found extremely helpful, having to do with the energetic legacies of family soul-patterns. This was actually something my sister started before she passed and after we had learned that we were BRCA+. This is based on the work of Dr. Bert Hellinger and is sometimes called "family constellation" (although it has nothing to do with the stars) www.lifeshiddentruths.com or www.carlavanwalsum.com. 

I swear by the bio-identical hormones. I have been on them for 3 1/2 years with only positive results. 

As far as maintenance, I take a high dose of D3, multivitamins, something called Onc Support that my regular doctor gives me, Fish Oil, B12, and all the "getting older" stuff like CoQ10, etc.

I try to avoid radiation as much as possible (PET/CT or MRIs) and opt for thermography or sonography for routine scans. 

Great big hugs to all!

Donna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 8:37am
Hi Donna,

Thank you for being so willing to share your experiences. It is wonderful to hear someone who has beaten cancer back into its hidey-hole let us know how they did it. Congratulations and continued good health to you!

Best regards,

Wade

Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; 08/07/2015 NED!

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