It's Been A While **Update**

It has been a month today since I posted with the news that my husband (CB) was told that his latest, and probably last chemo hope didn't work, and that he had a few weeks to a few months to live. Although we were understandably devastated, we continued on, making sure that he still met with his oncologist and regular medical doctor every week. Things had been going fine until this week. He started having heavy and frequent bowel movements. Two or three a day. On Monday, he started have a lot of blood in his stools. He didn't tell me how bad they were, but he stayed up for 4 hours on Tuesday, just going back and forth to the bathroom. Well, yesterday, he was feeling weak, and I had been telling him that he was more than like dehydrated, and I asked if he wanted to go to the ER. He finally said yes, and took a shower. I helped him get dressed, and let our sons know that they would have to help get him downstairs and into the car. We got to the hospital, and they gave him to units of fluids and started running tests. The attending dr. told us that they were definitely going to admit him. His blood counts were extremely low because of the lost of blood, he was extremely dehydrated, and it looked like his kidneys were failing. He was admitted to the ICU and was immediately given 2 pints of blood. By the time I got back there this morning, he had been given 3 more pints, plus plasma. The dr told me the following: CB is listed in guarded condition. He is pooping out mostly blood (the rectal cancer is now active. it had not been before); as quickly as they give it to him. His kidneys HAVE failed, and of course his liver is shot. Because his liver failed because of cancer, he is not eligible for a transplant. He has not eaten anything since yesterday because they feel it will only agravate his GI tract and cause more bleeding. The doctors don't feel they can do anything to help him, and his nurses said the same thing. They said that they think we should stop treating him, and go for making him comfortable, he can eat, and we can get Hospice involved. Ok, I am going to say this. Please don't take offense. This is just my opinion: My mom passed away in 2002 at the age of 72 from lung cancer. We realized that nothing was working and agreed to have Hospice come in. They came to the house on a Friday, met with my mom & me, wrote a prescription for Hydrocodone, had oxygen and a wheelchair delivered. I got the prescription filled and gave her the prescriped dosage to her that Friday night. Saturday morning, she had trouble waking up and was spacey the whole day. She died that evening at 8pm. I have always, always felt that I over medicated her and contributed to her death. She weighed 86 lbs when she died. The weight of an 11 year old. But she was given a adult weight dosage. When I called Hospice and told them what I thought, I was told that I didn't over medicate her, that she was in her active phase of dying How did that woman, from the telephone know that?). Truly, I was probably in denial and they knew that, but for some reason it just always felt like I helped my mom (with their assistance) to her journey. Now, I tell you this because I feel like the same thing will happen with my husband. He doesn't have any pain, so how will they MAKE him comfortable, and will they be trying to give him medications. This is scaring me. I tried to talk to CB tonight about what he wanted to do tonight. He is completely coherent, and he said his oncologist had come in that night, and he told her he didn't want to hear what she was saying and didn't want to talk to me about it. I told him I would do whatever he wants to do. This is extremely hard.

Thanks for letting me ramble.

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Well, it has certainly been an eventful few days. The drs and nurses said that I should stop treatment and to let CB quietly die. In my heart, that just didn't feel right, and I simply couldn't do it. They continued treating him, and on Sunday, the bleeding stopped completely, wih medication his blood pressure continued to improve, and a catherer was placed and he started peeing (sorry) like he was suppose to. He did so well, even his nurses were surprised. Now the hard part. Yesterday, we were told that he would be able to come home, but he would need Hospice care. His brother, sister-in-law and myself met with the Hospice rep and it was decided that they would help us. I did explain my fears, and was assured that I could decline anything I didn't feel comfortable with. This morning, I got there and his nurse (who use to be a Hospice nurse) gave him Morphine to make him comfortable (I hate that word!!)I lost it. I asked why she would give him that if he wasn't in pain. She explained that Morphine wasn't just for pain, but was given to him because it was ordered by his dr. to help him relax. He was out of it all day, kept asking what was wrong with him, kept trying to fight the effects! The Hospice coordinator came by his room, and I again explained my experience with Hospice, and what I felt happened with my mom. Her response: She thought that the timing was suspious and it sounded like assisted suicide to her! She assured me that things had changed and that I would not have to worry about that with them. All the equipment was delivered yesterday, and he was transported home today via ambulance. The nurse got here about 30 minutes after he got home and did a cursory assessment (how do you feel, any pain, anxiety) etc. Well, he was moving around alot and started breathing fast. She said that he was anxious and wanted him to take more morphine. Damn! I told her no. He was still drugged up from earlier, he was not in pain, and she would not be giving him any of that. As she was leaving, she told me that Hospice was not there to take over, but to help CB and us all. She promised she would not be pushing Morphine. The Hospice pharmacy delivered all the medication after she left and it all had something to do with delirium or pain. I'm going to ask tomorrow what they would do if he was allergic to this stuff. Don't get me wrong. I completely understand that there may/will come a time when he requires these drugs. I just don't understand why they are in such a rush to give these drugs. He is completely lucid, not in pain, moving around in the bed by himself. I can't take that from him. He was getting up out of the bed in the hospital, and he hasn't been up since yesterday. He told me toniht that he has to get up tomorrow. That just laying there is what's going to drive him insane. I told him he had a very trying day today, but tomorrow he could definitely get up and at least sit on the side of the bed for a while. He said, Carolyn I have to. I cannot just lie here. He is so strong!In the hospital, he sat our sons and myself down, and gave us instructions on how to go on when he dies! All about his car warranty, car payments, how our sons have to really step up and take care of me. We just let him talk. He really needed to do this and we let him. He has had multiple private talks with our sons and it has been really touching. Well, it's 10pm, we are sitting here discussing "The Good Wife" and he's ready to go to sleep. I'm exhausted already, and this is just the first night. On the positive: I am losing the 20lbs I needed to, and I'm getting very strong! Will check in soon.

Carolyn