Posted in Tough Choices

Talking About It – A Diagnosis that Screamed “Abandon All Hope”

Someone recently told me that more we talk about things; we are a step closer to healing.   That is what I want more than anything in world.  My brother’s death has been the hardest obstacle I have ever had to come.  Everything is a reminder that he is gone and it is hard to keep going when you feel that life can’t be normal anymore.  I have talked about my feelings about what how I felt when my brother got sick, his death, and how I have felt since then.  What I have not talked about is the disease itself, the toll it took on him and all of us, and what led to these feelings. 

I remember the day that I found out my brother was in the hospital.  It was first week in November.  My sister called to tell me and I was angry at my mom and him for not letting us know what was going on.  I went to the hospital to see him and he refused to let me know what was going on with him.  I left the hospital angry at him for shutting me out.   I was angry at him the second time I went to see him the hospital but I didn’t show it because I couldn’t begin to imagine what he was going through especially with the doctors telling us they suspected stomach cancer.  I was scared for him and angry at him at the same time.  He was shutting us out when he needed us the most.  He was also in a lot of pain and his body was retaining water because of the tumors.  He was in really bad shape and I wish to God that I had been more sensitive to this rather than being angry that he had shut me out. 

My brother shut everyone out the first couple weeks before his diagnosis came out.  We did not know the reality of the situation until the words “peritoneal mesothelioma” were said out loud to us.  I did not believe it because there was no way my brother who had never worked in an asbestos-related industry could have developed this disease.  It was like this cruel fate and I remember saying to my sister that we were lucky up until this point.   The confirmation of my brother’s diagnosis came two days before Thanksgiving and so started a steep uphill battle for my family where the chances of us coming out on top were small. 

The nine hour surgery to remove the cancer took place the day before Thanksgiving.  My brother’s diagnosis was screaming at us, “Abandon all hope.”  We all wanted to give up and let fate take its course.  We didn’t know what we supposed to do and it was like all my siblings and my mother were looking to me for the answers.  I was always the last one to give up fighting when something hard came our way, and I didn’t give up very often.  I was giving up and losing hope and in a way, they felt like if I gave up, all hope was lost.   

Someone had to put a stop the horrible reality were in at the moment and with everything going on in slow motion, someone had to do something and something had to change.  I remember those long nights pouring myself into research and those early mornings being on the phone trying to find someone to help my brother.  His diagnosis was rare with less than 300 reported cases a year.  It was a diagnosis where the chance of remission was small but I wanted my brother to beat all the odds and go into remission. 

We all became like robots just trying to make it through the day and spending our evenings at his side.  My mother never left his side.  There were only two instances for that entire month that she left the hospital. In the first instance, she left for only two hours and I had to drag her out of the hospital and the second instance was the night before my brother’s battle ended. 

The hardest part was watching my brother who was once strong turn into someone weak and vulnerable.  Watching him turn into that person made me so angry at the world.  Within a few hours after the surgery, my brother was on a ventilator.  A week later he was off of it.  Then, he was back on it and then, he had a trache put in.  Seven days after the trache went in, my brother was gone.  Every time we felt hopeful, our hopes became shattered.  We were angry and we didn’t even know who to blame.  Fate was being so cruel to him and us. 

I would visit my brother in the hospital every evening.  I would sit next to him and promise him that if got past the hurdle he currently in, things would start to look up.  I promised him that I was not leaving a stone unturned so that he would get the best treatment possible.  I also promised him that he and I would have a better relationship after all was said and done.  

The one moment that stands out for me is when I told him that a year from now, he would look at this experience and wonder how he got through it.  He told me, “No.” I told him that he would be with us a year from now, and he again told me, “No,” he wouldn’t.   My brother knew that his days were outnumbered and the hardest part was even though I knew he knew better than I did, I didn’t want to know.  Every time, I would tell him about a procedure the doctors were considering, he would tell me to stop.  When we discussed the dialysis, he told us he had enough, but we kept going. I hate what we put him through in order to try to save him.  He was dying and he was the only one accepting it.  He was put though so much but the battle was lost before it even began. 

Every day, we prayed for a miracle but there was no miracle in sight.  His diagnosis and his prognosis screamed at us: “Abandon all hope.”  I didn’t want to.  I was the only one fighting against fate and when his battle was nearly over that Monday morning and it took every bit my strength to tell the doctors to go ahead and stop the blood pressure medications. In the early hours of December 20, my brother slipped into a coma and the doctors told us he would not come back to us.  At that point, the only thing keeping my brother alive was the blood pressure medications and the ventilator.  

 I had convinced myself that my brother would go into remission while every other member of my family understood he was dying.   My ability to be strong and to not back down was my downfall.   If I had abandoned all hope, his death would have been easier for me to bear.  Despite that experience, I am glad that I fought for my brother in the way that I best knew how.  I advocated for him when he desperately needed someone to do that for him.  For that, I don’t have any regrets.


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