dealing with loved ones in pain

Some of you may have read my posting today in the Prayer Request forum. If you haven't, my husband has recently been diagnosed with his second tumor in six months, another soft-tissue sarcoma. He had the first such tumor surgically removed in December. On Monday, we met with an oncologist in San Francisco who was intelligent and personable but not particularly encouraging. He recommended two 5-day rounds of chemo, with a three-week break after each round. If the chemo doesn't work (and he said there was probably only a 25-30% chance it would work), then surgery to remove this second tumor isn't recommended, because the tumors will probably keep growing back. If the chemo is successful, we can proceed with surgery and simultaneous targeted radiation. He feels these tumors are probably due to the radiation my husband had in his late 20s for testicular cancer, so you can imagine the mixed feelings I have about him receiving more.

My husband is in a lot of pain (more than with the tumor he had removed in Dec), and the pain meds he is on are barely managing the pain. We are seeing a local oncologist tomorrow (heaven only knows how we'll get him into the car, into the doc's office, and home again -- it really will be a horrible, painful trial for him because moving leads to excruciating pain). She will tell us if she thinks my husband can have chemo here in town or not. We are both hoping against hope that she will say Yes, because transporting my husband to to SF seems impossible in his condition. I am also going to ask her if she can prescribe different pain meds, or recommend different dosages of the meds he's on now. Perhaps a patch will help him. (??) Last night was very difficult because just the walk from his recliner (which is the place where he's most comfortable) to bed caused him to shake uncontrollably (his muscles were rippling wildly under his skin -- very scary looking) and to experience excruciating pain. He was actually crying from the pain -- and this is a man with a high pain tolerance and a stoic temperament. He's just feeling very worn down, fatigued, and stressed -- and all those things exacerbate his already bad pain.

Knowing that he's hurting, and watching him be in pain, and feeling so helpless to offer him any relief is very difficult for me. With the first sarcoma, we dealt with his pain, the hallucinations from his pain meds, his feelings of uselessness and fatigue, his lack of interest in food and the challenge of finding nutritional food that he would eat (thank heavens for liquid nutrion drinks), and so on, but after the tumor was removed he quickly recovered. The only residual problem was a lack of movement, control, and strength in his left leg (the first tumor pressed on and damaged the nerves). We were thrilled that the tumor was completely removed, but worried about whether my husband was ever going to be able to enjoy his favorite activities (golfing, gardening, making furniture, etc.) because of his leg. Then WHAM! Another tumor, more serious than the first. Now the leg problem seems so minor! Now we are worried about saving his life.

With the last tumor, I was so organized. I made a chart of his meds, updating it immediately if a new drug was prescribed, and I kept a journal of what drugs he took (dosage, time, strength), what he ate, how he felt, etc. I kept in good communication with friends and family and doctors about DH's condition. I was a good advocate for him and was generally on top of the whole situation. This time I'm so flummoxed by what the oncologist told us (and by the wild emotional ups and downs of the past months) that I haven't even updated his Current Meds chart, and I haven't been keeping a journal. I know I'm just stressed and still shocked by the news, but I need to swing into action soon. I plan to go to our monthly Cancer Support meeting Tuesday evening (I doubt DH will be able to attend, even though he wants to go), but -- even though the people are wonderfully kind and helpful -- there aren't many caregivers there.

Sorry for the long post, but you can probably imagine how upset I am and somehow writing about it to people who have gone through similar experiences is helpful. I've read posts in this forum in which people who have been (or are) caregivers have offered support to other caregivers who need it. Well, I really need it now. Thank you so much.