Does anyone have a family member that passed with Sarcoma Cancer?

Thank you. It has been a difficult few weeks for our family.

My heart goes out to you, @annben

My situation is not current and very, very different from yours. My mother died due to leiomyosarcoma at age 67, much less than one year after her diagnosis when I was 27 years old, and it still aches sometimes for me at age 63. I have some friends my age whose parents still have "all their marbles," and live active, rewarding lives, and seeing their delight in each other can make me wish that my mother and I could have had that.

And, I am totally aware that her going before me was the natural order of events, whereas your loss is most definitely not. Again, my heart goes out to you. I know of two other people who have had rare sarcoma diagnoses. One in their teens who received early and aggressive treatment and survived 8 years, and one who lived 11 years through aggressive treatment and died at age 45. The quality of life for each of these beautiful people was significantly compromised the further their illness progressed and they ventured through treatments and clinical trials. Even when each had short periods when no cancer could be detected during one or more of their many regular PET scans, they each lived under the shadow of potential bad news and often felt isolated as a result. I have hoped that each of their contributions to oncology science have benefited others.

I'm so very, very sorry that your son had so little time, that he had to experience existential fear and endure pain, and that you had so very little time with him and the last of it may have been fraught with shock, fear, dread and seeing him facing the end of his life. I hope that his knowledge that he had a life-threatening illness allowed him even a tiny bit of time to notice the preciousness of all that he'd had so far, and gave him and your family members opportunities to express whatever you all needed to say and hear from each other. I know, from experience, that even with longer time available, that is not always a complete process...how can you ever ask all of the questions and say all that needs to be said out loud and heard? And, while in the initial frantic period of shock and attempting to access treatment, that's probably the last thing that one would consider doing. I'm so sorry.

With years of perspective and after much support and reflection, one way that I have coped with my losses has been to tell myself that my loved one's life here on this earth is over, which is tragic, but my love for them is not over and my part of the relationship can go on. I choose to continue to be in relationship with my mother...both who she was and who I was, warts and all, and with the mother she would have most wanted to be if life had been the most kind to her (and she was a wonderful mother), and the person I hope to become (the daughter that I would most want to be to her) as I move through mine.

One other way that I coped was by attending a grief education and support group that was hosted by a hospital in my area that was open to anyone needing support to process their loss ( I found it in the yellow pages on the work desk that my head landed on when I felt I just could not keep going forward, about three months after her death). My shock was beginning to wear off a little and the pain was difficult to tolerate.

The group was not specific to diagnosis. It was skillfully led. Some people did not come to the group until decades after their loss; some had just managed. Some had spent years bracing against the pain through drinking, over-work, diving in to the TV, etc. What that taught me was that we were all shocked when the end came and sometimes long after. As many lost their loved ones through long, protracted good-byes as lost their loved ones suddenly, due to accidents, suicide or more like the case of your son. Those of us who had had more time to say good-bye carried scars from witnessing our loved ones' suffering, deterioration and shrinking definitions of hope. Those who lost someone in the blink of an eye envied those of us who could take time to say what was needed and had the luxury of being with and caring for our loved ones throughout their illness and dying process. They would have savored an opportunity to care for their loved one's weakening and aching body, even after they could not sustain communication. We who had had that luxury could wish that our losses had been over "like that" so that we would have been spared the drawn-out experiences of dread and witnessing our loved ones' suffering. What I am saying is that you may find great comfort in speaking with others whose loved ones' illnesses, treatments and experiences were more similar to that of your son's and yours. Here seems to be one of the best places to find that, and I hope you do. And, you may find that grieving along with others whose experience is different from yours brings a kind of comforting perspective, if not relief.

I will keep you in my thoughts, @annben . I hope you find all the kinds of support that you need in order to process what has happened to your son and to you, in ways that help you to carry on to whatever extend possible, for now, and to eventually find ways to carry your grief while also finding a new normal, with moments and waves of grief interspersed with moments of peace and even joy.

Sincerely,

@gynosaur

@annben I have not experienced loss in my family from sarcoma. One of my friends was diagnosed with osteosarcoma when he was in his mid-40's. His primary care physician kept reassuring him that the lump above his knee was "nothing to worry about" until the lump continued to increase in size. So, my friend's diagnosis was delayed. There is no way to know if the delay in diagnosis contributed to his death less than a year later. He left behind his wife and his young son. I know from his wife that losing him at that stage of their lives together with their young son was very hard on both of them. His wife, who is also a friend, went to a support group. Several years later when I talked with her at length she cried through our conversation, and said she was still feeling very angry at losing her husband. She and her son were members of my congregation and they never returned after her husband's death. She figured God wasn't there for them so why should she pretend to praise God? We all wanted to be "there" for her but respected her wishes and privacy.

As @gynosaur42 wrote some people would have liked the time to say goodbye and care for their family member during their final days. Others do not feel that way. I had that conversation with one of my high school friends last summer shortly before he died from metastatic prostate cancer. He said he was relieved that he had the opportunity to talk with so many loved ones before leaving his physical body on this earth. He compared that to a mutual friend of ours who died suddenly and never had that opportunity. So what I'm saying here is that the experience of grief is different for all of us. No one expects to lose their children and in my opinion this is the saddest grief of all. Like @gynosaur42 my mother died at age 75 (I was 44 years old when she died). Not a day goes by that I do not miss her. I hold her in my heart and love her every day. I talk with her and I know I live on with what I learned from her. I have her sense of humor and find myself uttering her witticisms and thinking, oh, I got that from my mother. Her life, memory, and legacy are a blessing.

I hope that you will find a grief support group in your area or religious community. Even if you do not talk about your own loss you may find comfort in listening to others. I hope that your grief lessens ever so slightly over time as you find yourself celebrating the joy that your son brought to your life and to your family.

Will you please check in whenever you'd like and let us know how you are doing?

I am so sorry. Such an incredible loss! My husband died of MPNST. Discovered in 2008…a rare cancer. We were referred to Mayo in Jacksonville. The doctors there were incredible and gave us eight years together after diagnosis. I will be forever grateful to them and their care. sarcoma is such a devastating diagnosis. Again I am so sorry.

gynosaur42,
Thank you for your kind words. I appreciate you sharing your stories about
your loved ones' illness and your journey. Unfortunately I am learning
that a Sarcoma Cancer diagnosis does not usually have a good outcome.
Although my son's time was short after his diagnosis, the time we shared
was precious and meaningful. We both seemed to know how each day was a
blessing. We never thought about what the final outcome could be. Just to
focus on the healing. Since we were just in the beginning of his treatment
he was optimistic. He didn't have all of the negative side effects that
chemo can sometimes bring. When he passed it was a shock. I wasn't ready
to give him up. We thought we had more time. I am joining the Cancer Care
support organization. And Friends and Family are doing their best to be
supportive. But the loss of a child is a pain that is hard to endure. As
you said, my love for him will live on and remain in my heart . Wishing
you and your loved ones peace and good health. Hugs to you, and thank you
for the inspiring words.

Sincerely,
annben

@naturegirl5
Thank you so much for responding with your story. Such a sad loss of a
father and husband. A missed diagnosis would be hard to accept. Always
wondering about the if's and what could have been. As I myself have gone
over and over again in my mind. Wondering why it is your child or loved
one that is gone. Why didn't we get to the doctor sooner. Not always
understanding God's plan. I pray for God's love and healing in my life. My
son was a joy and a light in our life. We were so close. I hope your
friend can find the answers she is looking for. I am thankful to find these
resources through the Mayo Clinic and Cancer Care. Support is so
important for a family that is grieving. Thank you again. It means alot
to know there are people out there that really care and want to reach out
and be a light to those who are grieving. Wishing you and your loved ones
peace and good health.

Sincerely,
@annben

@macallan
Thank you for sharing your story. Another life gone too soon because of cancer, so very sorry. You were fortunate to have those years with your husband after his diagnosis. Thank you for responding and reaching out. I miss my son very much, I talk to him and let him know how much he is loved and missed. Everywhere I turn in our home there is a reminder of him. His kind, loving and gentle spirit. I will never stop thinking of him and the loss we feel without him. Wishing you peace and good health.
Sincerely,
annben

Thank you for your kind words. Grieving is such a personal thing and unfortunately sometimes those closest to you are afraid to talk about your loss loved one as they worry it will upset you. Talking is what helps you release all the mixed feelings you have inside of you. If you can find a grief support group where you can express yourself freely, you will find that the emotions you are feeling will not be as intense. You will still feel all the wonderful emotions you feel for your son but you will be in a more peaceful place and can go forward with your life as your son would want you to.