there is a deep ache in my heart tonight
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Tributes
Forum Description: This is a tribute section on our website to honor members
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11886
Printed Date: Mar 26 2026 at 5:11pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: there is a deep ache in my heart tonight
Posted By: SagePatientAdvocates
Subject: there is a deep ache in my heart tonight
Date Posted: Mar 24 2014 at 1:39am
|
Dear all, so here I am suffering because my ethics dictate that I don't mention this patient's name and I do not want to mention her name without asking permission and I do not want to ask permission. It is all too raw. A very young woman died last night. In her 20's. 99% of my interaction was with her Mother although I was very happy to meet her daughter and I feel we knew and respected each other. Plus we got each other's sense of humor. Along with the information of her passing I received a beautiful thought from her mom which I shall cherish. Yes, I tried my best and the oncologists and her mother tried their best but our best was not good enough. A young physician friend of mine told me tonight that he had a patient who "failed" two clinical trials. I gently told him that I used to say that, too, until a dear advocate friend of mine corrected me. "The patient didn't fail the trials; the trials failed her." I am writing this for two reasons...one is that I feel that I am going to explode with grief and I need to write and the folks who read this forum 'get it'...oh, G-d, do we ever get it. the second is that I want to ineptly say to the Mom...you have my condolences and you have my respect and you have my love. You did everything you could. Please be kind and gentle to yourself. Please grieve and try your best to live your life as gracefully as you did these last years of such incredible stress and hardship. with my love to all here, and thanks for being here, tonight, for me. A safe haven in the awful storm. Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Replies:
Posted By: 123Donna
Date Posted: Mar 24 2014 at 6:44am
|
I'm so sorry Steve, I can feel your pain from reading your post. This is heartbreaking, just heartbreaking. I don't know how you do what you do helping all of us and the emotional toll it must take. We are all better for your passion and love you give to others hoping to make their journey a little easier. Be kind to yourself. I hate this disease so much. No one should pass in their 20's from this disease. It takes too many women, young, beautiful women. Donna ------------- 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 |
Posted By: Fats1976
Date Posted: Mar 24 2014 at 7:47am
|
Steve.... just the other day I was thinking of you... I belong to another forumn beyondtheshock... that was also and is still very helpful, to me and mom, whenever a lady signs on and is diagnosed tnbc, I always jump in to refer them to this forumn... and on occasion have mentioned you. On one of you recent posts you mentioned how busy and stressed you were... I thought to myself that you are one in a million.... to volunteer your time and knowledge to help so many people.... and because you want to... this "job" must be a difficult one.... but yet you do it.... your wife and family must be just as amazing to allow and accept that you invest so much time to tnbc.... I'm sure at times you must think you can't do this anymore. ... and then you'll get a phone call or read a post and start all over again.... because you care.... Steve you are amazing.... sorry that you are so sad right now... find peace with knowing that you did all you could..... THANK YOU THANK YOU(can't say it enough times) for all you do for this community..... God Bless Fatima, Johannesburg, South Africa xxxxxxxxx ------------- Mom Dx 9/12 Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
Posted By: mainsailset
Date Posted: Mar 24 2014 at 8:54am
|
I have such deep respect for those with Tneg and for their families, friends and advocates who jump into their journey with them, all without the benefit of any other warriors' armour. Our shields are our determination to keep attacking; our hope that somehow the chemo is the right match and that it will be enough; that all the thousands of pieces of complication will narrow into a simple solution, the death of our tumors. To stand by, sometimes to help make life saving decisions, but still standing by as each way point is chosen is in itself heroic. Certainly many many people just can't do it and then some just don't have the choice. But I heard a wonderful song the other day. It's not on you tube, but it's part of a wonderful album from an old time folk singer. And the line that stuck with me is from "Tall Ships" and it is 'My heart is in the wind' It's meant to be a sailor's song but now I'm going to add that I will love the spring breezes, the soft summer freshening and think of all the hearts that are up there in the wind, together. I also saw a wonderful poem for a friend: Do not stand at my grave & weep I am not there. I do not sleep I am the thousand winds that blow, I am the diamond glints of snow I am the gentle autumn rain As you awake with morning's hue I am the swifts up flinging rush of quiet birds in circling flight I am the soft starlight of night Do not stand at my grave & cry I am not there. I am all around you. Love Mainy ------------- dx 7/08 TN 14x6.5x5.5 cm tumor 3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
Posted By: Lillie
Date Posted: Mar 24 2014 at 9:16am
|
Dear Steve,
Again, thank you for the way you use the grief you feel from losing your own mother. You are paying forward, and often that is a hard road.
I am so sorry for the loss of this young woman. Too Young!! My condolences to her family and to you.
God bless,
Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: Natalie
Date Posted: Mar 24 2014 at 3:49pm
|
Steve, I am very sorry you are feeling such a heavy heart today. You are an amazing man with such a big heart, and everyone that has had the pleasure of you in their corner know this. Such a big heart that just keeps on giving. Thank you for all you do. As Lillie says this young lady was so young and certainly she didn't didn't even get to live the life that she should have. My deepest sympathies to her family, friends and all who loved her. Natalie ------------- TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg |
Posted By: Melissa P.
Date Posted: Mar 25 2014 at 9:02pm
Steve, we all "get it" too well and you have us to share your feelings with. The feeling of helplessness is a hard one to get pass, be kind to yourself. So very sorry for your loss. Melissa------------- "Hope for more Tomorrows" TNBC dx August 2009, Age 41, Stage 2, 2cm, 0 nodes Lumpectomy/ACx4,Taxolx4/33rads Triple Negative Breast Cancer, "I Won't Back Down!" mlsspaskvan.blogspot.com |
Posted By: SagePatientAdvocates
Date Posted: Mar 26 2014 at 12:54am
|
Thank you all for writing..Mainy, the poem is lovely. I knowingly got involved with this patient, and her Mom, believing this would not end well but I felt compelled to try and help. Perhaps my efforts made a difference, perhaps not, from a medical perspective but from a supportive perspective I feel I helped and that is important, as well. Melissa, as you said, the helplessness is profoundly disturbing at times and yes I try to put it in perspective but I still ache. It is just who I am. I have had to give up trying to figure any of this out on a 'fairness/justice' basis. There is no fair here and no justice. It just is. Some day, I believe with all my heart, important steps will be made not only towards more effective, enlightened, treatment but, dare I say it, a cure. In the meantime, it is what it is and it is important that we support each other. What a lovely family we have. We are truly blessed. I am going to try to take a break from this forum till April 7. I arrived in Australia today and my wife arrives tomorrow. I have tried my best to let everyone, with very serious issues, know of my plans and everyone has been very kind and supportive and at the same time they know that in an emergency they can reach me. It will be hard for me to stay away but I promised my wife that I would and she has been so marvelously supportive all these years that I feel I must honor my promise that this would be a true vacation. Without her love and support I simply could not continue. My bride of 34 years elegantly, and lovingly, graces me, and our children/grandchild, with her presence. with my love to all, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: lilyrose
Date Posted: Mar 26 2014 at 1:12am
| Steve, I am new to this site, but have read several of your posts. You are obviously a very compassionate individual. It is wonderful to know that there is someone like you available to those who are affected by TNBC. Please enjoy your time away with your wife. Bless you! |
Posted By: Natalie
Date Posted: Mar 26 2014 at 7:05am
|
Steve, You are truely a wonderful soul, rest & rejuvinate and please try to enjoy while abroad. Natalie ------------- TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg |
Posted By: Annie
Date Posted: Mar 26 2014 at 8:00am
|
Hello Steve, May the Good Lord Bless You and Your Wife in your time away in Australia. May you enjoy Peace, Joy and Mercy. Love, Annie ------------- Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012 |
Posted By: Georgia1965
Date Posted: Mar 27 2014 at 6:12am
|
Welcome to Australia Steve! Georgia Xx  ------------- dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation |
Posted By: dmwolf
Date Posted: Mar 27 2014 at 6:32pm
|
I'm sending you a big bear hug, Steve. Enjoy Australia. love, d ------------- 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. |
Posted By: TriplePositiveGirl
Date Posted: Mar 27 2014 at 6:58pm
|
Hi Steve, I'm so sorry to hear about the loss of this young lady that was near and dear to you. It is beyond unfair. I do hope your travels to Australia bring a sense of peace to you and it sounds like you really need some time relax and focus on yourself for a change. As you like to say - please find the beauty in each and every day! Best Wishes, Lisa ------------- Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED. |
Posted By: Jojocat
Date Posted: Mar 27 2014 at 7:38pm
|
Hi all: I do not dare to read about all those losses because they hurt me deeply as I have experienced family death. My mom asks me if I have pain in my body everyday. I am a mom myself. I don't know how she can take this. Life challenges us too much, too much. The girl is peaceful in heaven now. Just want to tell the mom: please take care yourself and release the grief as much as you can for the one who loves you in heaven. Joanie ------------- DX 10/24/2013 Between stage 2b and 3a. 2 big nods 1.8cm a d 1.4 cm. tumor 4.5 cm. 35 years old. 11/15/2013. AC/T |
Posted By: jw
Date Posted: Mar 30 2014 at 4:57pm
|
Steve, You are truly a hero to everyone on this forum. When you hurt, we all hurt. Your selfless devotion to all inspires me to be a better person. I hope you enjoy your vacation - you deserve a fabulous rest. Thank you for all you do...every day...every week...every year. With best regards, Janice ------------- Dx 3/16/10 age 47; Stage 2a, Gr3; 2 tumors - 2.6cm + 2.4cm; BRCA Neg. L-Mast 3/22/10; 0 nodes - clear margins; Chemo 4/29/10-8/5/10 Dose Dense ACx4 + Taxolx4 No Rads; |
Posted By: Melissa P.
Date Posted: Mar 30 2014 at 11:40pm
|
Steve, I know you're enjoying yourself and relaxing in Australia with your wife. Take as much time as you need. Thank you for always supporting all of us Melissa ------------- "Hope for more Tomorrows" TNBC dx August 2009, Age 41, Stage 2, 2cm, 0 nodes Lumpectomy/ACx4,Taxolx4/33rads Triple Negative Breast Cancer, "I Won't Back Down!" mlsspaskvan.blogspot.com |
Posted By: MLindaG
Date Posted: Mar 30 2014 at 11:49pm
|
Steve, So sorry for the loss of the young woman that you were helping. I really don't know how you do what you do......you are truly a blessing for families and patients. I had a loss a little over a month ago of a neighbor who was diagnosed with TNBC about a year after my own diagnosis. She was almost identical to myself in every respect. She was 3 years older than me and her cancer was 3.7 cm vs my own at 3.5 cm. She had at least one node involved. She was on the same chemo as me. We would talk about every 2 weeks. We spoke the day before she was to have her 11th of 12 taxol treatments. When she didn't call the following week I gave a call to her husband only to find out she was in intensive care due to a toxic reaction to taxol and 3 weeks later she died of those complications. I am still in disbelief that she is gone. She was very scared of the chemo and was worried about having radiation down the road. We had so many talks about her impending surgery and rads. I don't know how you do what you do all the time. This really was such a disappointing outcome and I was so sad about it and she was a 63 year old woman. I know I did help her get through what she did get through and I know she felt better about it all knowing my outcome. We don't really know what life has in store for us. I guess I feel like I gave her hope and I know she lived her life to the fullest. I can just imagine how sad you must have felt - a woman in her 20's with a whole life ahead of her. Have a wonderful holiday in Australia! You deserve a break. wishing you the best as you enjoy each and everyday of your vacation. ------------- Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative. |