ErinM

Have you asked her if she would be willing to interview a couple of Hospice organizations so she can choose which one she would be interested in "when the time comes"? If it were me, I would try to find a way to get her to at least talk to them so they can tell her what all they can do for her. After talking to them, she may very well find that it is something she wants to go ahead and get involved with. My dad was so surprised by all the services they offered. Some people do have a misconception that hospice cannot do anything until the end. They do so much to provide emotional and physical support. My dad's death was very sudden and had we not gotten involved with hospice early, I don't know what I would have done. For example, on the day we signed up with them they brought emergency medications that they could open and use if the need became urgent without having to wait for their pharmacy to bring them out. They can create cocktails of medications that ordinary pharmacies cannot make. My dad could not get his nausea under control at all from his first chemo treatment. After six months of dealing with it, hospice had it under control in 2 days. Obviously, I am very much an advocate for at least interviewing and choosing a hospice before you need them. At least you will know their policies and know what number to call later when you need it but would rather be focused on spending time together than finding hospice care.

My dad had the same problem during the entire course of his illness and nothing ever worked until he was in Hospice care. They gave him a mixture of Benadryl, Dexamethasone, and Reglan. It seems to be commonly known in hospice as BDR. I know that the hospice pharmacies seem to have a little more freedom when prescribing and mixing things like that, but there has got to be something that works out there. Zofran seemed to help some with dad's nausea, but not immensely. The nausea really bothered him emotionally because it was constant. It was constant even when he wasn't receiving treatments of any kind. The doctor didn't seem to think that there was any reason he should be nauseated and it was really hard to deal with. I hope that you find the solution out there.

I wish I could help you. One thing my dad said to me was that sometimes you look for and need an excuse to quit treatment. I would find out if your husband would choose to continue treatment if they could get the headache under control. Maybe he only wants to stop out of frustration, and maybe there is more to it. Then I would make sure his medical team is aware of his feelings if he says that he would continue under those circumstances. I would find out if his insurance covers palliative care so that he can see someone who specializes in pain control. One thing I have come to realize is that oncologists are trained to try to cure at all costs, even when the disease is uncurable. I have found that it is very hard to make them get it. My dad had chemotherapy for colon cancer in 2000 and then his lung cancer in the last year, and I really don't think either of the oncologists really got it. He quit chemo in 2000 and was just lucky that it was all removed surgically. He quit chemo again with the lung cancer because he just wanted to be done feeling terrible. Those decisions were incredibly hard for our family to accept, but they were his to make. I have often wished that I could make the oncologists really understand what it was like for him and maybe he would have had more time with us.

Thank you all. I am trying desparately to figure out how to make this all okay in my head. Dad's absolutely amazing nurse called me wanting to get together and meet mom. She said that she felt we had left a lot sort of unfinished and needed some closure after the chaos that occured. I hope that she can help me understand some of what went on. I overheard her telling the ER nurse that the fear of something like this happening is why they are working on setting up their own ambulance service. That is great but there are several other Hospices in town that have inpatient services, plus who knows how many in the state. I feel like maybe I need to check into the legislation that caused this to happen. I mean, the ambulance drivers did what they were required to do by law. They stuck close by to transport him back to hospice as soon as they got the word. They apologized profusely and were very distraught themselves. Everyone involved was amazingly upset. I don't know if it is possible, or if I have it in me to do it right now, but I want the laws that caused my dad to go through that to be changed. I want them to make it illegal to ask someone who has just been dosed with such a high level of painkillers to be asked to make medical decisions for themselves. Before leaving my house he had been given .4ML of morphine repeatedly until he had more than 250 mg of that in him, plus 20 mg (four pills) of percocet, plus 3 mg of ativan over four hours. I will have to get the notes out his nurse practitioner made while she was here in order to verify the exact amount. Could he really be expected to answer anything but yes when asked if he wanted to go to the hospital? Could he be expected to differentiate between the words hospice and hospital or even understand that he revoked consent for hospice care? I had durable medical power of attorney, and he was on massive amounts of painkillers, so why was my decision altered? I guess I hope that his nurse will be able to help me understand what happened since she stayed with him. I want to find out if the hospital and ambulance service will provide any records from that day if I or my mother produce the death certificate. I want to make sure no one ever has to go through that again. Most of all, I want to know that the ER was justified in making the choice they made to withhold pain medicine in the interest of "fixing" him. All I was told was that they weren't giving him pain meds BECAUSE they were giving him lasix, but I don't understand that. If there is a medical reason for that fine, but he was quite obviously dying and anyone who looked at him would have known that yet he hadn't been given pain meds for 3 hours and 45 minutes when it was all said and done. Right now, I also want to get over the unbelievable fear I seem to have developed about going to the ER. To make matters worse, I had to take my daughter in on Thursday night because we thought she was having an appendicitis, and I nearly had a panic attack. As it turns out the reason she had pain in the lower right side of her chest/upper right abdomen is because she had bacterial pneumonia. I had to take her to a different hospital for my own sanity. I am sorry this is so lengthy and includes so much rambling. I have been wanting to post here for the last two days, but I really didn't want to upset or scare anyone who was living with this disease. Finally I realized that you all would either understand or be able to ensure nothing like this ever happened to yourselves or your loved ones.

I don't even know where to begin. While he was in Hospice care, this was totally unexpected. The night before he was doing everything for himself and laughing and eating dinner with us. He woke up in pain and unable to breathe. I had the on call hospice nurse come out and then his regular nurses. Nothing went as it should have. We couldn't get his pain under control so we decided to transport him to the Hospice inpatient unit and try and get it under control there. We had an ambulance service come to transport him to the Hospice unit. I told them I would ride separately so I could take my kids. We went to the inpatient unit and waited... and waited... he never showed up. Nearly two hours after they picked him up we finally located him at the hospital. The drivers asked him if he wanted to go to the hospital and of course, being in pain and having had insanely high doses of pain killers he said yes. I had to bring my kids back the 25 minute drive each way to the house cause they wouldn't let them in where he was. By the time I got to the hospital he had been there around 3 hours. What I encountered when I was there was horrific. Thank god for his Hospice nurse. She went there and tried to advocate for him. She had them standing there with the paperwork to release him and put him back in Hospice. They had stopped all of his pain meds to try and "figure out what was wrong and fix it". He had nothing for three hours. He was scared and upset and in pain. I don't know if I will ever be able to describe to someone exactly what I encounted. It was horrific and I am still struggling to understand it. I demanded that the nurses bring me his box of meds and told her if they didn't give him morphine while waiting for the ambulance I would. She got meds and injected them in his IV. His nurse had been there rubbing his back by his lung the whole time and trying to comfort him. He left the hospital at 3:20 in the ambulance and we got him to the Hospice and on a morphine drip for pain. He passsed away at 4:05 while my husband and kids were in the elevator on their way upstairs to say goodbye and while my mother was on an airplane taxiing to the terminal in Dallas to catch her connecting flight to come here for the next few months to be with him. I was able to get a phone call off to her to say what she needed to say to him right before he took his last two breaths. I never thought it would be like that and I was not prepared. I thought he would gradually become more ill and we would have some indication that it was coming. My kids did all come in and say their goodbyes after he was gone. The Hospice was kind enough to keep him there until my mom's plane came in and I could bring her to see him. The only thing I feel like I suceeded at that day was that I was able to ensure he died free of pain and relaxed. I don't know how to come to grips with the fact that he spent 13 of the last 14 hours of his life in excruciating pain. We think it was a pulmonary embolism orsomething of that nature. I am struggling with anger and frustration. I am so thankful that mom is here to help go through all of his things here and help me sort them. We have so many medical supplies and he wanted to make sure those got donated. Apparently one of the community clinics will take them for the needy. Anyway, I know that is probably riddled with run-on sentences or typos. My contact lenses are constantly cloudy from crying and it hurts to try and read the screen I just needed to get that out.

I am so very sorry for your loss. Your family is in my thoughts.

Anger is my most common emotion these days as well. I guess it started after my husband's grandfather died in October of cancer. We don't even know where his cancer came from because everything happened so quick. He went in for routine surgery and was so filled with cancer that the surgery wasn't finished and he was gone a few days later. He was never even sick before this all transpired. My husband and I went there to be at his side with the rest of the family. I wasn't that close to him, but I find myself greiving as if I were. It has brought out so much anger in me because I have seen what my dad will go through. It is like it has forced me to grieve before it is even time to grieve. I find myself shutting people out and letting myself silently ponder my anger at everyone around me. I have felt anger for irrational things like the fact that I am an only child and have no siblings to share this with. I have been angry with my husband because he has a sister he is very close to and he will have a sibling to share it with when he loses a parent. I have my mom, my husband, and my friends but I have thought many times that I would give anything for a sibling to know exactly what I was going through. Ironically, the only person I have been able to talk to about some of my anger is my mother in law. After losing her husband to lung cancer and her father to cancer I can at least relate to her. I have to believe that anger is just a normal emotion to deal with. Cancer does change you. I hope that someday I can get past this anger, but I don't think I will ever look at people the same. Maybe it is me, because I was always so optimistic about life. Nothing ever really got me down or bothered me. The biggest difference for me is that all of my closest friends seem to notice my anger. I suppose that is because I was always the one to try and make everyone else cheerful and happy. Right now, I am just working on trying to talk openly with my husband rather than bottling things up. The thought had not occured to me until I read this post to try therapy, but maybe that will help. It is just nice to know that others are dealing with anger as well.

Don't assume that it means it is a bad sign. I have looked at your post a couple of times both initially and to read the two responses, but I don't have the knowledge to help you. I do agree with Muriel despite my limited knowledge. It seems like radiation can only be given in limited amounts, so why waste that tool when you don't know if it is actually cancer. I hope you get some resolution.

I am really confused. By your profile it appears your mom has only had two scans in the last eight months. Is that correct? I find that shocking becausee dad has had at least 5 followup scans sine treatment began and has one more next week. I think if that is the case then you certainly have a right to be troubled by the lack of information. How are they monitoring the effectiveness of treatment? I wish that there was some measure by which we could define a good oncologist versus a bad oncologist. I don't want to feel like I should have to be questioning how an oncologist is doing his or her job, but it would be irresponsible not to I suppose.

Dad's oncologist doesn't seem really concerned about doing the MRI of his brain either and I find it really troublesome because he has so many headaches. I have read so much about it being part of the evaluation for Avastin. I got his next appointment scheduled when my mom will be in town, so I am sure she will fully address the issue. It is really terrifying the first time you read those scan reports. We found out dad has all sorts of issues that they found incidentally during the scans such as hernias, etc. Fortunately, none of those things necessarily need to be treated at this point. It mostly just added to the already lengthy report. I really wonder if knowing all the little details of the reports are entirely useful in some situations. It is a double edged sword in my opinion.

I am amazed at the warm and truly caring response that is poured upon new members. I am new here and just beginning to learn. It was really hard to see outside of our situation until I came here and saw so many other people experiencing so much. I really hope that as time moves on that I will be able to provide some of that much needed support and advice to the newcomers. Right now, I may not have the answers, but I can be here for support. This is an unfortunate bond to have with people, but nevertheless it exists and in my short time here I have seen that it is a strong bond. I certainly see what Ned means when he says that these are some of the most understand and most selfless people on the planet. That said, I just want to say welcome to you.

Thank you for the welcome. I didn't realize at the time that he had all those tests done so quickly. I was prompted to register finally by a post in the General section regarding someone in Denver who was not getting timely treatment. Apparently the lung nodule clinic here has a policy of seeing all referrals in less than one week at which time any additional tests are scheduled. They then have their entire team of different specialists meet several times a week to review charts and test results on each of their patients. Then they can direct the patiant to the proper treatment without them having to go to several doctors. Their goal is to have patients receive treatment within two weeks of referral. I am incredibly impressed with the whole process.

I have been lurking and reading a lot, but it is now time to post. I tried to fill out my profile, so hopefully that will work. My dad was officially diagnosed with poorly differentiated adenocarcinoma last October 12th. I am an only child and he moved out to be near us and our four kids in Colorado ahead of my mom's retirement next March. At diagnosis we had to make a huge family decision about whether or not he should stay here or go back and live with mom. Ultimately, mom said it was easier for her to regularly travel here than for us and our four kids to go there. Luckily her work has been wonderful and she has a great deal of leave saved up. She has been reading here as well, and I suppose she may start posting at some point. Dad is currently on Avastin maintenance and we are waiting for the first post chemo scan results. He decided not to do the last chemo treatment and start the maintenance early because of increasingly bad side affects. I forgot to mention in my profile that he had a melanoma removed in 1987 and then was treated for Colon Cancer in 2000. I believe it was stage III but I will have to verify that with mom. It has been rough to see him have to go through this again. Anyway, I just want to say that I am really inspired by the strength I see here and look forward to being a part of your community. Erin

I have been lurking and just registered, so I have not even had a chance to fill out a profile. We are in Colorado Springs which is a little over an hour away from Denver, but may be worth the drive if she can be seen as quickly as my dad was. He had an appt to get the results from his CT scan with his PCP on Monday Oct 3rd. They called and referred him to the lung nodule clinic at Memorial Hospital while we were sitting there and he went to see the pulmonologist there a couple hours later. His PCP said they typically get people in within a day or two as a policy and that they are very efficient. They had the bronchoscopy scheduled for Wednesday morning. We got the biopsy results really quickly and they scheduled a PET scan and an appointment with the surgeon (which was later cancelled as they weren't going to recommend surgery) and he was seen by the oncologist at the area Rocky Mountain Cancer Center on October 15th. He had a port inserted and received his first treatment by the end of the month. I guess I am in shock that people are not pushed through this process faster because that seemed like an eternity and they were really proactive. Here is a link for the cancer center website as they have a couple of centers in Denver: http://www.rockymountaincancercenters.com/ Some information on the Lung Nodule Clinic: http://www.memorialhospital.com/wps/wcm ... +Treatment Unfortunately I can't find further information on the Lung Nodule Clinic and I thought they had their own webpage. I hope that is a bit helpful. I guess I better go get my profile information and introduce myself properly.