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November 13, 2012 at 6:29 pm #20766
😥Hello again everyone,
It has been a long time since I posted anything here. I got so involved with caring for my husband that I had no time for anything else. The last time I posted anything was back in January when we found out about the metastasis in his brain at that time I was posting in stage III. That’s when the roller coaster ride began. He started IPI in January at the NYU Cancer center under the care of Dr. Anna Pavlick. After the first and only infusion he received, he got swelling in his brain and they stopped IPI immediately. February 2nd they started WBR (whole brain radiation) daily sessions for 10 days, this made him extremely weak and sick he couldn’t keep any food down and he lost 20 pounds in 2 weeks. 2 weeks after the WBR was completed we got the news that the BRAF test came back positive and he would be given ZELBORAF which was great news since they would not be able to give him IPI because of the Brain Mets and the side effect this caused.
He showed some improvement with the ZELBORAF almost immediately. The visible Melanoma tumors had decreased significantly and on March 27th his Radiologist Oncologist gave us the good news that his brain mets had all disappeared with the exception of one that was right on the brain stem, that one they would wait and see if it decreased in a few weeks. So we had to sit and wait, he was hospitalized a couple of times due to some side effects from the ZELBORAF. He started getting cysts all over that would cause pain and fevers, small price to pay, we figured since the ZELBORAF was working. April came and went with good news, brain mets had all disappeared and his LDH levels were all normal and everything was looking good.
Then May hit us like a ton of bricks. A PET scan on May 17th revealed a great deal of Metastasis in the bones, the doctor wasn’t sure if it was residual from previous months that the ZELBORAF had taken care of or if it was new. At this point I am starting to feel like the doctor is not being aggressive enough or maybe she just knew something that certainly we did not know, that there was no hope. That day she tells us that the blood work looks good and that she wanted to wait two months to do another PET scan to verify if the metastasis was in fact real. June came and went and my Elliot appeared to be getting worst. When I questioned the doctor about his over all appearance she explained that it takes a long time to recuperate but that he was on his way to getting better,
July 27th he gets the PET scan done and on Monday 30th my world came crashing down, ZELBORAF stopped working, he had metastasis in his bones, liver, spleen and lungs. EVERYWHERE, this monster had been eating from the inside out. He was in obvious pain and he wouldn’t tell me. Because he didn’t want me to be affected by this anymore than I already was. That day they started him on IPI AGAIN. They sent us home on FENTANYL patches and a ton of other pain meds to control some of the pain he was having because of the bone metastasis. Our next IPI infusion was on August 20th little did we know that he wouldn’t make it until then. I guess the IPI and the ZELBORAF was just to much for his liver to take. On August 13th I took him to see Dr. Pavlick because he was looking jaundice and he was bleeding out of his ears. He was admitted to NYU on that day and on Friday August 17th at 2:55 PM the love of my life left me. At 36 years old I feel that this is a tragedy. I was and still am in immeasurable pain. Sorry for the long story I just felt that I needed to share this.
😥November 13, 2012 at 8:38 pm #57514lunchladyParticipant So sorry to hear your news. My husband is stage III with nodular melanoma. It’s very scary. I pray that you will find comfort in the memories of your life with your husband.
LolaNovember 13, 2012 at 11:28 pm #57515denisem0725Participant
I am so sorry for your loss. I am caring for my grandmother who has widespread metastatic melanoma. She is also on zelboraf and showing improvement but I am terrified everyday. Melanoma is a horrible beast.November 14, 2012 at 2:57 am #57516 Thank you so much Lola, take care of your husband make sure that the doctors are doing everything possible for him. My husband also had Nodular Melanoma but I feel that we were very complacent with the doctors. I mean that is after all what they do but I just feel we need to be more pro active and get ahead of the disease instead of waiting around to see what it does or waiting for it to rear it’s ugly head. Melanoma is very scary and my heart goes out to you. I will keep both of you in my prayers and yes his memories are comforting but also very painful. I miss him terribly and even though I know he is no longer suffering it hurts me that he is no longer here. If you have any questions at all about anything please don’t hesitate to ask I will more than happy to share my experiences and story.
Denise, I will keep you in my prayers hopefully Zelboraf will continue to work for your grandmother.
I remember when I started telling everyone that Elliot had skin cancer, no one took it too seriously. I guess they just assumed he would getting better I mean after all “it’s only skin cancer” right, this is the one cancer people underestimate and those of us that have lost a loved one or who are caring for a loved one have to bring attention to this deadly and very serious disease.
ErikaNovember 15, 2012 at 1:08 am #57517AnonymousGuest
I’m so, so sorry for your loss. This is a cruel, heartless disease. Thirty six years young, my heart breaks for you.
I hope you’re taking care of yourself and accepting help. We are here to listen and help.
JeffNovember 15, 2012 at 3:22 pm #57518
I also want to extend my condolences to you as I read that your Rachel passed away. As for me I am as well as I could be under the circumstances. I feel the pain everyday and ask WHY? everyday. The most difficult thing is trying trying to accept that all our plans and dreams are gone and trying to make sense of it all. But as my family tells me I have to keep going for our 2 kids. As the prayer goes “may God grant me the serenity to accept the things I can not change”
ErikaNovember 15, 2012 at 9:03 pm #57519AnonymousGuest
Thank you Erika. Like you, my life (as well as my son’s) has been changed forever. I like to say I have my good days and bad weeks. I’m not depressed really, though ocassionally I am for a short period, rather I feel a bit “flat” most of the time. Also I’m just really, really sad at times and I miss her so much then, especially at night before I go to sleep and in the mornings before I go to work. I miss talking and sharing our lives with each other. I miss her small touches and especially when we would hug while she stood on the first step of the stairs leading up to the bedrooms. Memories still give me small shots of pain but that’s getting better. I miss my mother-in-law too. The two of them brought so much life into the house. I still tortue myself sometimes, though not as often now, with the repeating vision of watching her slowly die in those last few minutes, the slow coasting down of her breathing and heart beat like a light on a dimmer switch. It was very peaceful though and she was in no pain.
But she’s gone now and I’ve a new life. I can’t honestly say I like it but shoot, I’m not even 3 months old yet. I do get some enjoyment out of my hobbies, a nice day, and going to work. Continuing to post here helps as well though it can be difficult, but I feel the need to share my experiences both before and after Rachel’s passing. I have to say I feel conflicted about sharing my “post-passing” experiences but I really did find the contributions from Bettina, Susan and others who had joined this “club” before me a source of hope and encouragement while Rachel was still alive.
Erika, even though Elliot had the disease, it left its mark on you and your children as well. I can only imagine the challenges you and others here face with young children. It sucks but please give yourself plenty of time. It’s only been a few months. I’ve found no magic answers for the grief but talking to friends who have lost their husbands, wives or a child has been a monumental help and comfort to me and a vast source of true wisdom, but I find it hard to reach out sometimes. My faith has gotten stronger too and I also ask that painfull question “WHY!” We have to.
JeffNovember 15, 2012 at 9:44 pm #57520
First I want to say that it is a breath of fresh air to speak to some one that knows exactly, and I mean exactly, what I am feeling and going through right now. You have hit it right on the nose. I too torture myself thinking about his last week, day and last few hours. I go over it in my head, things I should have done and said differently. I chose to DNR/DNI because of the love I felt for him I didn’t want him to continue suffering but at that moment when he took his last breathe I completely lost it and jumped on him and proceeded to administer CPR because I wasn’t ready to let him go. It was just horrible to think that he was gone. It is so difficult to utter those words, my husband passed away, it seems like every time I say those words the pain is brand new. I feel it all over again. I find myself going to the cemetery every day before and after work just to remind myself that he is really gone and that I am not in some bad dream that I can’t wake up from.
I know things are not always going to be this way but I guess I am going through some form of survivors guilt, like I shouldn’t be eating if he isn’t, I shouldn’t be living my life because he is no longer here. I also regret that we never spoke about the “important” things. I read a post from Bettina, she expressed how her and her husband spoke about “end of life things” my husband never brought it up and I was afraid to bring it up because I didn’t want him to think that I was giving up on him, it was a very touchy subject in our home but we should have been realistic I guess. I hope I am not rambling on and that I am making sense. I wish I could have told him I was, and still am, angry that such a wonderful, giving and loving human being could get this horrible disease. It isn’t fair and I know that my selfish side is the one saying that because as I said before I know death is a part of life but I expected a long life with him, a long marriage, not just 10 years what happened to 40 years. Well I guess I have to accept it, right. Thank you for understanding.
I also want to thank everyone who through all the daily problems, heartache and pain they face log on and help others with their posts.
ErikaNovember 17, 2012 at 4:16 am #57521dkmcParticipant
Oh Erika I am so sorry for your loss. It is so relentless this cancer. Even when all is ok it is not ok. You feel you are just waiting…but I really get it- your feelings of “we need to stay positive”, of not talking about certain issues because it might mean we are giving up…it is this fine line we all navigate. It sounds like you both were there for each other, doing the best you could. It is really all we can do. Please vent as needed- this forum is a great place to do it. And please take your time & allow yourself to grieve. There is no right way to do it, it just is. You were brave & I think correct in your decisions but it does not make them any easier. Be kind to yourself. Take care, KarenNovember 17, 2012 at 9:04 pm #57522AnonymousGuest This is tough stuff to read and to write about. But I can’t tell you all how much it means to me to hear from and help out other spouses and SOs.
It’s hard, really hard work and you guys have so much courage and grace.
Bless You All!
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