Wife diagnosed with liver cancer. Some advice please.

Hello Alan

i see that this post was 28 days ago. You posted recently so I was hoping you will read this message as soon as possible.

Have you tried other treatments besides therapies?

Hi Alan. I'm sorry ti be reading this post about your wife. This post was the reason I signed up for this account. I am neither a patient nor a professional, however, those were the only 2 options and I don't want to mislead anyone here about my status. What I am is a person that has walked in your shoes. My husband was also diagnosed with liver cancer.

   Perhaps I should start at the beginning and give you the back story, for every case is diffrent and in that regard, the development and progression of this Machivellian disease, can be very different from case to case. But, hearing those words come out of the doctors mouth, is like getting sucker punched, just totally blind-sided. It knocks the air out of you, simply because it was so sudden and unexpected. Once you catch your breath, and begin to digest what you have heard, the terror sets in. Well, at least that was my initial reaction anyway. 

   Here's the background history of my husband's life leading up to the diagnosis. He started drinking at 12 years old. At 13, he discovered marijuana and shortly there after, he started with the harder drugs. LSD, Magic Mushrooms, Acid, Black Beauties, Yellow Jackets and the list goes on and on. But after a while, those things were not good enough. He began shooting Speed, Cocaine, Heroin and just about anything he could find. So he was a cross addicted drug addict/alcoholic.

   He was 10 years older than me, so by the time I met him, he had been abusing not only alcohol and drugs, but his body and his liver. I was 17 when we began dating. Now, I'm not an idiot, I was painfully aware of his drinking problem. My family actually owned a local town bar, which I was the bartender for. So, yes, I knew about the drinking. What I was unaware of was the drug abuse. My mom and dad, however, were very aware of his addiction. They tried to discourage the relationship, to no avail. It was simple for me. I saw beyond what they couldn't. When I told my mom that he reminded me so much of my father, she flipped out on me! She screamed, "Don't you EVER compare that man to your father!" But, I saw him in there. Years later my mother apologized to me. She said I was right, he was VERY much like my father, but nobody else could see it. They finally did see it when he went to rehab and got clean from the drugs and then, on his own, just started going to AA meetings and got completely clean AND sober.

   Once he got off the drugs I took him to our doctor, just to have blood work done so I would have a baseline to go by. I knew there was damage to his liver. He had also done a bout with Hepatits A and Hepatitis B. So, in my mind, there was cause for concern. He was still drinking at this point however, so the levels weren't totally accurate.

   I had our daughter in 1987 and it took him 2 years BUT, in 1989 he was no longer drinking either. I decided after 6 months of being sober, more blood work was in order, so off we went for that. His liver counts were still high, which they shouldn't have been. He had been sober long enough for the counts to drop. Well, unless one of two things was going on. Either he was still secretly drinking (which I knew he wasn't) OR there was a problem with his liver. By this point, you know it was the latter.

   The doctor sent him for more tests and to a gastroenterologist, for more specialized testing. Well, it turns out that he had Hep A and Hep B and what at that time was called, Hepatitis Non-A Non-B. there wasn't even a name for it yet! Hepatitis C. He also had cirrohsis. So all those things were still attacking his liver, despite the fact that he had cleaned himself up. But, that was not a real shock to me. That stood to reason. 20+ years of abuse will take its toll. Well, back in 1995, the treatment for the Hep C was Interferon shots. Several times a day, for 6 months, at $500.00 a month! Initially, the gastro doc told us they were having pretty good success with the clinical trials and there was a good chance this was a means to an end and although I knew his liver wouldn't (actually couldn't) heal because of the cirrhosis, in my mind, I rationalized that at least it wouldn't get worse.

  After the six months and $3000 later, we go back to the gastro doc and he tells us that the interferon had been found to only be a 5% chance of getting the Hep C under control. I was LIVID! I asked him how long he has known this information and he answered quite casually, "Oh, maybe about 4 to 4.5 months ago." I totally flipped out! Like a lunatic, screaming that he knew that information 2 months into the treatment and he never saw fit to STOP the Interferon?!?!? I had to leave the office because I could not control my emotions, therefore, I could not trust myself not to become physically violent with this man!

   Then he made my husband bring me back in the room and he told us, "look, Jay is going to die a very old man and when he does, it won't be from his liver. What he has is a very slow moving disease and now that he is no longer drinking or drugging, the chances were slim to none that his liver would be the cause of his demise." Sure, that's what you want to hear, BUT, I don't just take anyone's word for things. I never have. I began extensively researching what all this could lead to. All I knew was that I needed to educate myself and try to take all the proper precautions to avoid it all together or catch it early.

   In the interim of all that, Jay had his first heart attack at 39 years old. Back for more blood work we went. High cholesterol, blockages in his arties, high blood pressure. It seemed everything was going wrong.They put him on all the proper meds to control all those things, of course. However, since I had done so much research, I knew every single medication he was taking was destrying his liver. Which made me very uncomfortable and like a mother hen. Nagging him every 3 months to go get blood work. When he suffered another one, they actually found out he had suffered at least 12 heart attacks. He ended up needed a quadruple bypass. I was certain I would;t be able to take any more I was tettering on the brink as it was. Well, he came back strong from the bypass. But the meds, he was still taking those meds and they had raised the doseages. That kept me on edge, constantly.

   At one of his three month blood work appointments, his liver counts were off the charts. So much so, that our doc asked him if he started drinking again! When he answered no, he had not had a drink in 17 years, the doctor was very alarmed. He ordered more tests. Tests that I later found out, should have been being run since he was put on all those other meds! Our doctor never did ant AFP tumor marker tests in Jay, despite the fact that he was at high risk of developing liver cancer. Once again, I flipped out on yet another doctor! I had written down all the blood test codes that were being ordered and I researched them all to see what the dictir was looking for. Well, sometimes it isn't such a good thing to be highly intelligent and have the internet at your disposal. Every single test he was now (finally!) ordering was for liver cancer.

   When Jay wasn't home, I called the doctor and I told him that I knew he was looking for liver cancer and he was not going to blind side my husband. If he was going to hear those words, he was going to hear them from me! The doc was shocked and taken aback, asking me how I knew that and who told me? I screamed, "I'M NOT AN IDIOT!! I KNOW HOW TO RESEARCH AND HOW TO READ!! DO YOU THINK JUST BECAUSE I'M NOT A DOCTOR I DON'T KNOW MEDICAL TERMINOLOGY?!?!" He had nothing left to do at that point but tell me what I had already told him!

   Anyway, I looked into clinical trials, I asked if I could be a living donor, I called every place I could think of where I might be able to find help. To feel like I was not just letting this happen without exhausting every possible avenue. I was told Jay was not a candidate for surgery, yet, I was never told why, even after repeatedly inquiring. To this day I don;t know for sure, i can only surmise, that the cancer was too far along for it to be feasible. I mean that's the only way it makes sense in my mind.

   I took him to the best doctors and decided the best place I knew for cancer was Sloan-Kettering in Manhattan, New York. Which was about 2 hours from where we lived but that didn't deter me from getting him admitted there. I called and just told the nurse he needed to be admitted for failure to thrive. That was all I had to say and he was in that very night.

   I think the worst part for me was I knew the prognosis, from the minute I knew they were looking for liver cancer, everything I read was ending with the same word. I knew it and I would not allow the doctors to tell him, then at the end, I found out he knew and wouldn't let the doctors tell me. Funny how we were both trying to spare the other, but, we had been together for 24 years. More than half my life. I was 41 years old. He passed away about a month and a half after his 50th birthday.

   But things have changed so much now. They have made great strides, through all the research and trials to find a cure for AIDS. It's amazing now what they can do. Especially wjen it is caught in its early stages. Keep the faith and know that there are people out here that are praying for you and your wife.

   Although we have never met you, many of us understand and sympathize with what you and your wife are going through. Just know that prayers are being said and positive thoughts are coming your way. You have people you can lean on, if and when you have to. I wish you both the very best... From my mouth to God's ears.. Stay strong!