Aug 31, 2011 - 7:18 am
Although I've been posting on the esophageal site here for months, I have not ventured into the caregiver site until today. I guess I've just been so busy trying to 'fix' my husband, that I've forgotten about myself. But, alas, here I am. Let me introduce myself.
My name is Chantal and my husband is Lee. He was diagnosed January 2011 with esophageal cancer with mets to the liver. At the time of diagnoses, there were 15 spots found in the liver. He was told that he had 9-18 months if he was treated, 6 months without treatment. We decided to begin chemo immediately. He is not able to have surgery, nor radiation, so chemo was our only option. He began treatment In mid february, and continued for 4 rounds, ending in June. Upon having a CT scan, they told us that the tumors had shrunk, so yippee, take a chemo holiday! Of course we were very excited by that news, and planned a celebratory vacation in Las Vegas for the first week of July. Of course, the best laid plans, and all that...... He became quite ill right before the trip, having severe pain in his lower stomach, complete lack of appetite, vomiting at the mere sight of food, hot and cold flashes etc. We decided to go ahead with the trip, and were able to see some great shows, but overall the trip was pretty miserable for him.
When we returned, a few days later his pain was so intense, we went to the ER. They did a CT and discovered that the tumors have grown by 50% and the esophageal walls had thickened. So they wanted to re start chemo, ASAP. We decided to go for it, and began the second week of August. At this point, after almost 2 months of eating very little (and may I emphasize VERY) and drinking even less than that, he was starving, dehydrated and losing weight at an alarming rate. We demanded a feeding tube, which we had asked for starting in July, and the doctors seemed to think he did not need it. Not sure what their rationale was there, but finally they agreed, and took him off his round of chemo to prepare for the feeding tube surgery. This all went off fairly well, he had quite significant pain afterwards, and still has some discomfort, but overall, I think the nutrition and hydration has helped.
The doctors wanted to re-start chemo this Thursday, and we've been see sawing back and forth, wondering what the point is. Overall, his emotional state is very fragile, his health is fragile and his moods are becoming dark. (not violent, just very sad and seems to have lost all hope) We were told that treatment for stage ivb is palliative in nature, and would improve quality of life. Well, sorry but we have not had much quality in a very long time. A good day now seems to be when he is not sleeping all day to avoid the pain and depression. So anyways, after a lot of soul searching and discussion, tears and more tears, he (we) have decided no more chemo, let the chips fall where they may, let nature take it's course, whatever you want to say. So, honestly I'm ok with his choice, relived almost. It has been so hard watching him suffer for months. He has had few joys, pretty much refuses to leave the house and sits around moping all day. I certainly don't blame him one bit, I'm actually not much better. I've become a hermit as well. I feel extreme guilt leaving the house, especially if it's to go off and do something fun. Also, often when he does eat or drink something, it gets backed up in the esophagus and he starts choking. I'm terrified to leave the house for fear that he'll eat something and choke to death, without me here to help dislodge the food.
I don't know what's in store for us in the near future, I'm terrified, sad and the question 'why Lee" is constantly in my head. He is such a wonderful man, never did a darn thing to deserve something so awful. We were married in May, 2010, so we've only had one anniversary. (We've been together a total of 7 years however, and living together for most of it) I've been robbed of many wonderful years with the love of my life. I'm only 39, and the thought of being a widow is incomprehensible.
I'm just terrified of the dying process. I hate seeing him suffer constantly. It rips my heart out. I don't want to lose him either, but hopefully he'll be able to have some quality pain free time before the end comes. I hope I'm strong enough to face what's in store.
Thanks for listening