Jenny, it's good to see you posting! It's been awhile.
Deb, welcome to the forum! Maybe you will be able to get out a little by yourself while your houseguests are there. Don't feel you have to entertain them or be waiting on them hand and foot. They are family. Let them find out what it's like to have to deal with your hubby 24/7. If there's a possibility you might not hang in for the long haul, they need to know what it's like. They need to know anyway, to participate in his care when they can.
Don't be embarrassed about taking him to the ER. If he is exhibiting signs of encephalopathy, go with your gut. Is he on Lactulose for that? Did they increase it after the ER visit?
I want you to know that I had liver cancer a little over 2 yrs. ago. It was one huge tumor which took up most of my right lobe and had metastasized to the inferior vena cava, making me ineligible for either a transplant or surgery. Shands had found it on a routine ultrasound (which I was having once a year due to my hep C) and there was nothing they could do. So I made an appt. at Mayo--and am still here today, cancer free. After tons of tests, they did chemoembolization, which shrunk the tumor some. A few months later, they tried a study drug, TheraSphere, which is delivered through a catheter in the groin right into the tumor. It is a form of microscopic radioactive beads...somewhat like the seeding they do for prostate cancer. It took several months to get the full effect, but by May 2007, the piece of tumor that had metastasized shrunk back into the original tumor and the original tumor had died, along with the rt. lobe. So they surgically removed the entire rt. lobe and gall bladder. I never needed any other treatment, though I got scans and blood work every 3 mos. until recently. I tell you this story so you will know there is hope.
How many tumors does your husband have? It sounds as though the cancer is confined to the liver, so that is good. Have they explained the various treatments available?
During all this time of awful stress, my long-term relationship did suffer. Though we were not living together at that point, we did drift apart. We are still friends, but it will never be the same.
Liver disease causes unbelievable fatigue. No matter how much sleep one gets, it is never enough and never makes much difference. However, to NOT get enough sleep makes a huge difference. I normally sleep at least 12 hours a day. If I get up earlier, I have to take a nap by late afternoon or early evening. My palate changed, also, particularly when I had cancer. I mostly wanted soups, fruit, and fruit ices. To this day, I don't like anything heavy and I eat a lot of fresh fruit.
It's great that you have SS in place. What is Compassionate Allowance Disability? I was approved for SSD in '05, but for a different illness. Now I am full retirement age, so they switched it over to SSR.
I have to question your statement that he should be back to work in March '10. I think that's overly optimistic. If he doesn't get a transplant and/or the cancer treatment isn't successful, he won't be able to work. And if he does get a transplant, it's unlikely that he would be able to return to work that soon...if ever. Read some of the posts from those whose loved ones have had transplants, and you will see what a very long road recovery is. I know you didn't sign up for this when you met your guy, so it will be up to you to decide if you are able to handle it. You will get lots of support and information here, though--that I can assure you. Dore, same goes for you.
Post Edited (hep93) : 9/28/2009 6:20:16 PM (GMT-6)
Thanks for the background, Debbie. It was, most likely, radiofrequency ablation that he received. Were the tumors 2 and 5 cm? Mine was 11.5 x 8.5 cm. So you can see how unlikely it was that anything would work for me.
I was a medical transcriptionist for 15 yrs. prior to getting SSD. That involves a lot of sitting, which I could no longer do after hip replacements. However, I can tell you that a sedentary job that requires a lot of focus and mental work can be just as tiring as an active job, if not more so.
Actually, Mayo claims to have the least amount of wait time for a liver in the U.S. I believe it's about two weeks, or was. The reason for this is that they will sometimes accept livers that are less than optimal.
I hope your guy does get transplanted soon, but even so I think it is really optimistic to think he will be able to return to work by March. I have yet to read about one person who has gone through transplant w/o setbacks and other problems, including my brother-in-law.
Have they made any mention of surgery regarding the tumors? I know they don't like to remove them if they are more than 2 cm. However, they could remove part or all of the lobe they are in and he can live with just one lobe, as I am doing. Of course, transplant would make cancer surgery unnecessary, but it really depends on how long he has to wait for a liver and how fast the tumors are growing. You said they are slow growing, which is good. Mine we're not sure. The previous year, the tumor did not show up. Personally, I think the radiologist missed it, as it grew very little from the time I was diagnosed until I had the first treatment--which was about 9 mos. So to grow from nothing to the size where it was taking up the entire rt. lobe and spreading into the vena cava in a year's time seems a little far-fetched for a slow-growing tumor.
Just because he feels poorly is no reason to take it out on you. You need to let him know that. However, if his ammonia level is a problem, then he doesn't even know how he is behaving...so you just have to let it slide and try to get away for a few minutes so you don't blow up.
I was just asking about the Compassionate Allowance thing for my information. I am already on SS and Medicare, with some help from Medicaid.
I hope the houseguests will be a help and not another thing for you to take care of.
Post Edited (hep93) : 9/28/2009 6:45:29 PM (GMT-6)