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Thread: Epitheloioid angiosarcoma is killing the love of my life

  1. #1

    Epitheloioid angiosarcoma is killing the love of my life

    Hello All,

    This has been the worse 2 months of my hubby's and my life. Everything started falling apart, and life as we knew it changed in a split second on 8/24/18 when I took my dear precious hubby to ER with unrelieved pain. A Cat scan revealed 2 large 4+cm masses- (1 on each adrenal gland on his kidneys), and 2 enlarged lymph nodes.

    My Hubby-who was already battling and kicking lung cancer's butt., and myself had been told by the radiation oncologist that things with the lung ca was looking good, the tumor had shrunk to over half its original size which was a just 2 cm when they found it to begin with. So when the impression of the CT scan came back as 'Suspected Lung Cancer Metastasis with lymph node involvement,' in ER that night, we both thought, "What, that can't be right." Little did we know at the time what he had was much more aggressive.


    A biopsy done on 9/3/18 followed up with only a Preliminary report-on 9/25/18, left both the Oncologist and ourselves in shock. He said the preliminary results of the biopsy was not at all what they had expected to see. He said they were expecting lung cancer metastasis, but all tests so far seem to be pointing towards Sarcoma instead, and more tests are needed to get a definitive diagnose.

    A return visit a week later still only held a preliminary diagnoses and the cells and markers they were seeing was similar to those seen in Ewing's/PNET, but now more tissue was needed to do more tests cause they'd used up all the tissue from the original biopsy-(Only this time they wanted an entire lymph node instead of just a needle biopsy), so one of the Surgeons here in town called him in the next afternoon and said we will do the surgery to remove the lymph node in the morning, and I'm like what about the 2 blood thinners, and the baby aspirin he's taking, shouldn't he be off those for a week before surgery? He said, yes, in the perfect world, but we don't have a week to spare to take him off them, they need to figure this out now, so he can begin treatment if possible. He did well from the surgery which was done on October 5th.


    Follow up appt with Oncologist was scheduled for Oct 18h 2018, but I took him in on the 16th instead for fluids because he had been vomiting again, and his health was continuing to rapidly decline as he had been since his 8/24/18 ER visit. He had already lost soooo much weight, was so sick, weak, and frail, and no treatment had started because no official diagnose had been figured out yet, until that day. The nurse said the doc would stop in and check on my hubby and when he did he was carrying the definitive diagnoses from the biopsy- Epithelioid Angiosarcoma High Grade. He informed my hubby that same day that due to the rapid progression and how far it has already advanced that there was no treatment options available, so he recommended we call in Hospice, which we did.


    Right at this moment at 9pm on 10/22/18, My sweet hubby is in our living room on a Hospice bed barely clinging to life, he hasn't eaten but a few bites of food for the past 5 days, and what he has eaten and then some has all came back up. He is soooo sick, and this disease is so aggressive that everyday I see so much drastic decline in him.

    I would give everything I own to be able to turn back time and have back all that time with him again, and again. something isn't right here, we've already made plans for our future together, and this damn sarcoma is right in front of our eyes ripping all our plans away at warp speed. We should be out walking hand in hand having fun somewhere, instead of the man I love with all my heart, soul, and very being having to go through all this. We both are physically, mentally, and emotionally exhausted because of this. I can't imagine spending even one second of my life without him in it., and soon that is going to be the case. Thank you all for taking the time to read this. cry:
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    So sorry to hear of this sad and most unexpected situation. Words fail, but each moment you spend with him now is golden. Just hand holding in silence can be so profound, as love does not need words.

    I am sending prayers on behalf of the two of you.

  3. #3
    Thank you po18guy,

    Right now, I'm keeping him comfortable while holding his hand, giving him tons of hugs and kisses, and telling him how much I love him every chance I get. He is still able to verbally communicate some as to whether he's in pain, and some of the other needs he has at the moment which also helps me ensure that I'm doing everything possible to make his remaining time here as comfortable, pain free, and loving as I possibly can.

    Many family members, and friends have come to visit him this past week, but otherwise, it's just me and him together against the world like it has been everyday for the past 14 years.

    I know, without a doubt, that I have to stay strong for him because he needs me more than ever right now, but if I allowed myself to, it would be so very easy for me to curl up in a fetal position, and just crumble into a huge pile of sadness, anger, despair, etc., on the floor. Perhaps I'll allow myself to do all that later, but for now, the love of my life needs me, and right by his side taking care of him and loving him, like I have done every other day, is the only place that I want/need to be. Thanks again po18guy.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    We accept the risk of loss the moment we say "I do." That does absolutely nothing to ease the shock, the sadness, the pain. Anticipating the greatest loss of your life, it might help to ponder something: You could feel no sense of loss were it not for the tremendous gain of having him all those years. The love that always was, remains and always will be. Nothing and no one can take that from you. Imagine also, if you can, the utter pain he would be subjected to if you were to depart first. If given the choice, surely your love of him would spare him that pain.

    None of this is easy. None of it is beautiful. What is beautiful is that each breath he takes is his personal struggle to remain with you - just as you are remaining with him. The beautiful is the love you share and there is an eternal aspect to that. Love desires the good of the other. Love does not count the cost.

    Sadness may permeate the soul, but the beauty of love is a comfort upon which you can draw for the rest of your life.

  5. #5
    Thank you po18guy for your kind, and beautiful words which are so needed today because my wonderful husband passed away at 10:30AM today 10/24/18 from this horrible disease.

    He took a bad turn for the worse last night, and today as I sat holding the love of my life in my arms, I told him how much I love him, how truly blessed I've been to have him as my husband, and that I'd marry him again a million times over. I told him I am so sorry that he's so sick, and that I know how tired he is, and that although I can't imagine even one second of my life without him in it that anytime he felt he needed to let go that it would be alright because we will be together again very soon. Within 5 mins of me telling him that, the man I love more than life itself, closed his beautiful brown eyes for the last time, and drifted off into eternal sleep to get a well needed rest. RIP My Love Until We Are Together Again.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  6. #6
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    I am so very sorry for the loss of your beloved hubby - I can only imagine the pain and angst you must have felt these last couple of months. My prayers are with you and yours.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    So sorry to hear this. Be assured that prayers are ascending.

  8. #8
    DebSeg-Thank you hun your prayers are so appreciated. Yes, the last couple of months have been a complete nightmare that we weren't able to wake up from. We spent so many hours of actually the past couple years, but especially of the past couple months racing and scrambling around trying to find something/anything to change the outcome. It seemed every corner we turned down ended in us hitting a brick wall, having no answers, no diagnoses, not being able to receive this treatment or that one for one reason or another, and with each brick wall we would hit I'd see my precious hubby slipping further and further away from my grasp, and continuing to get sicker, weaker and more frail along the way.

    Because things have been moving at such a rapid pace for so long, and my not being able to slow down because he was my so ill, and needed my help, the real Reality of all this has not yet sank in, and I know when it does I'm going to be even more of an emotional wreck than I am today.

    Po18guy-Thank you so much for everything, and for taking the time to talk to me when I needed someone to talk to. You have helped so much along the way, and your prayers are so appreciated. You can combine and move all 3 of my threads to the Memorial Wall forum if you want/need to.

    Although I wasn't able to help my dear hubby perhaps something in his battle may be able to help somebody else get their diagnoses sooner, and be able to receive treatment for this very aggressive disease.


    Here are links to my threads prior to this one describing how all this took place, and his journey along the way.

    https://www.cancerforums.net/threads...hat-is-growing

    https://www.cancerforums.net/threads...Metastasized-(

    https://www.cancerforums.net/threads...ove-of-my-life

    Also if anyone is curious about the Fishing Trip discussed within the 2nd link above, unfortunately we never got the boat home so my hubby could take that final fishing trip here on earth, but I'm willing to bet that him, his father, and his brother are in Heaven doing exactly that right now.

    Prayers, Peace, Love and Hugs To You All.
    Last edited by Crackerjack; 10-25-2018 at 07:54 AM.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  9. #9
    Super Moderator Top User po18guy's Avatar
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    I absolutely do not want to burden you in this time of sorrow, but for the memorial wall, maybe a short bio with a pic so that we could more accurately know and remember the love of your life?

    Blessed are those who mourn, for they shall be comforted.

  10. #10
    Thank you po18guy. I can do that, Do you want me to just write a separate bio post and then include the pic in it then? I looked at the others on the Wall and it looks like that is what they had done.

    I was thinking that all the threads about that person moved to the wall but apparently they don't. It appears to be new post all together, so I will start to work on that asap. Thank you for everything.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

 

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