Pegi

Jane, We start round 6 of chemo tomorrow. Muscles are the 1st thing to go and with each treatment the fatigue and weakness get worse. I am not looking forward to these treatments this week. He has still not bounced back from round 5 3 weeks ago. Chemo kills all the bad cells and destroys a lot of good ones. Peg

Jane, Going thru this battle myself right now with my husband. It is scary and a whole list of other emotions. First and foremost QUESTION EVERYTHING! Write it down when you think of it and keep that notebook with you for all appointments. No question is considered dumb or stupid. Hugs & prayers. This is not an easy road to go down. Peg

Hey Michele, Finally have a small window to slow down and try and catch up. we never get that peaceful weekend because they just have to visit. This last Monday was the last straw. I am done being nice to his family. They showed up 1 hr early and I was not even dressed yet. Lee of course was ready. They do not get it at all. I blew up and they chalked it up to me being stressed. They were only to be here an hour. After an hour & 45 minutes I told them all to get out. I am done. I am no longer answering their calls or reporting in. Not my problem. They can call Lee and the chances of him having his phone on are slim to none. After they left I had to give him a breathing treatment and his pain level was at about 8 for the rest of the day. Not fair to him or me. One of his buddies stopped by yesterday and stayed over 2 hours. Way past his lunch time. After he left he asked me why I did not ask him to go earlier. Told him he had lips and since no one gets the clue from me it has to come from him. It would be different if they came in to help with housework or meal prep. They do not understand that after they leave I have to disinfect everything. This cancer sucks and I watch Lee just exist. There is no quality of life. It hurts and you just do what you can to try and help them get the rest they need and be pain free. Lee completed Round 3 last Friday. This week Tuesday he had a port put in which I am hoping will help. Today we went for a CT Scan to see what is actually happening with the tumors. Dr visit on Monday to discuss that one. I should be able to get the test results online before that. I am off to bed and hoping for a full night of sleep for both of us. Take care. Hugs & prayers, Peg

Michele, Last night brought us both about 8 hours of solid sleep. Our consult with our family Dr was an answer to a prayer. He took him off Norco which was doing nothing. Gave him Ibuprofen 800 2x a day with the gabapentin. he gave us Hydrocortisone 2.5% and told us to keep also using the Lidocaine. He also told me not to use the prescribed ER drugs for constipation because both are harsh and result in pushing which we do not need. Lee's problem has been chronic diarrhea since end of March not constipation. The chemo & that caused the fissure. His pain level today maxed out at around a 3 and day 2 of chemo. Tomorrow brings end of round 3 BUT they need to put a port in. How are things going for you both?? Peg

There are no stupid questions. How do we learn what we are up against if we do not ask. I do recommend writing all your questions down. It helped me initially and even if the question seemed dumb I still needed the answer. The elephant in the room which no one wanted to ask was how long? My husband and son were kinda shocked when I did ask but I needed to know all of our options. So please ask away! Hugs / Prayers, Peg

Michele, How are you both doing? We have a Dr. appt this morning with our family Dr. Hopefully he can adjust his pain meds because what they gave him is not working. Since I brought him home on Thursday evening I think the most sleep either one of us has managed is 4 solid hours which is better than nothing. He starts Round 3 tomorrow for chemo. The cough is already creeping back in. Not good. One step at a time. Hugs & prayers, Peg

Michele, Well we had a rough night after coming home. Spent most of yesterday napping, snoozing & eating. They gave him all kinds of stuff and I think I have it all scheduled and lined up for times during the day. He is somewhat better than before. The pain meds are helping with that. The only way I good get him to finally settle down the other night was to take the heating pad and put a warm hot towel on it and let him sit on it. And trust me we tried everything else. He was able to get it all settled down again and back in bed for about 4 hrs sleep. Needless to say we both spent yesterday napping. Last night was good. We both got some much needed sleep. Seemed kinda stupid to wake him up @ 1 am to give him a pain pill but it had to be done. He went back to sleep. I have to tell you the Dr came at me in the pre-op room about my insurance. She was not nice and quite frankly I could care less. Someone must have handed her head to her on a plate. She was not happy. Last thing I need is a DR with a bad attitude. He has to have follow up in 2 weeks BUT I will not take him to her. I will call the insurance co and see who else is in the area from our networks. She was out of network approved. All her staff had to do was call and get the authorization #. Insurance is bad enough now days and this was just BS!. How are things going with you guys? I am so glad the MRI was clean. Have a great day! Hugs & prayers, Peg

Michele, Today was rough. They did find a fissure and with chemo it will take a LONG time to heal. I finally got him home and settled in for the night hopefully. Right now he needs sleep and rest. They gave him enough meds to choke a horse. i HAVE A LOT OF READING TO DO TOMORROW! Well the settled in did not work, He is back down in his chair and in pain. Will keep you posted. Peg

One day at a time one step at a time. Life is too short to have regrets. Love & compassion till the end. Hugs & prayers, Peg

Michele, Trip to ER had him admitted and resting comfortably last night for the fist time in months. They gave him morphine for pain. It was amazing to watch his face and body relax. He is scheduled for the surgery today and when I asked who the surgeon was they named the Dr that cancelled all of his treatment. Lee and I both just started laughing. Seems she will take payment from hospital for services just will not take our insurance. Pretty bad when health care has come to this. On top of everything else we go thru on this journey we do not need more BS handed to us on a plate. I have been bad also. I did not call his family to tell them anything about this. Before I left the hospital last night I fessed up to Lee. His reply was do not call them. And I am OK with that one. have to be back to hospital by 8 am. Still do not know when he is scheduled for procedure. Any results on that MRI? Hugs & prayers, Peg

Michele, Well it has been a BAD week. Went to colon rectal Dr on Monday. She scheduled out patient surgery for tomorrow so she could knock him out to see what is going on. Got new insurance cards in mail yesterday. Called them to update ins and they promptly cancelled everything. They do not accept new ins. Meanwhile she had me cancel and reschedule his chemo appt for this week and move them to next week. I have had enough BS. If the pain continues to worsen, which it is I am taking him to ER. Someone has to do something soon. Ain't Obamacare just great! NOT!!!!! Peg

Katie, I did not get pushed into it. I refused to sign ppwk and they left. I am still looking into palliative care. Something needs to be done soon. I will keep you posted on what I find. Peg

Michele, My brother died from cancer caused by Agent Orange. PLEASE fight this all the way. DO NOT GIVE UP! They do not like to admit that it is actually killing people. Hugs & Prayers, Peg

WOW! When it hits that hard and fast your brain does not want to process it. I know we have been on this journey since June 12th and it is like being on a roller coaster waiting for the crash. I love the go bald picnic idea. Just AWESOME! 3 days of nothing rest and enjoy your life. Emotional numbness hits when you are tired and waiting for answers. It seems to take forever. It is the unknowns involved in all of this that drive us crazy. Take care, God Bless and keep us posted. peg

Michele, Any news on the MRI? We are OK just both exhausted. His rectal fissure is wreaking havoc on both of us. I love all these little side effects. We start Round 3 next Tuesday, Wed, Thurs. Dr appt on Monday and Neulasta injection on Friday. By the time Friday rolls around we both ought to be blithering idiots. I have already told family NO VISITS at all next week or next weekend. Our kids are allowed BUT they come down and help out. Everyone else parks their butt and refuses to leave. Have a CT scan scheduled for Aug 17th to see if this is doing anything. We will cross that bridge when it gets here. Take Care, Peg

Michele, Any news on the MRI yet? We have had a week of Dr visits and of course FAMILY. Lees rectal fissure is really screaming now. Had a visit to oncologist yesterday and his 1st ?? was why are you in a wheelchair. I busted out laughing. He does not get the butt problem causes his pain level to fly from a 3 to a 9 in seconds. And walking sets it off. Then he says we need to get this problem taken care of...... YOU THINK! We meet with our primary care Dr. tomorrow. He will push for fixing the problem. Round 3 next week for chemo. Then they will wait 7 days to do a CT scan to see if it is shrinking or moving. i look at our schedule for the past month and just cringe and people wonder why I really would like a few QUIET days. And the coming schedule is not much better. And yes I am tired BUT I keep putting one foot in front of the other. The main concern is Lee and making sure he is as comfortable as he can get. Take Care, Peg

Michele. I pray for a clean MRI. Stay on them to get the results. Thinking of you. Peg

Vinnpal, You are in now. Welcome. Peg

Michele, STRONG ....... OH heck no. I have a support system in FL of all places. And they are my family They are the pushing winds behind me. Our kids are here and they help somewhat. I try to keep them away from Lees family because they would go ballistic with them. Had my son tell me the other day my inner witch needed to quit hiding. Of course he used other words. He was right. She is no longer hiding and I fell SOOOOOO much better. you have nothing to fear but fear itself. The problem with any cancer is the UNKNOWNS. You have no control it does. People will tell you a lot of stuff and most of them in his family need a reality check. Your husband made it to 6:30. I am impressed. Lee gets up around 6 am and is back in bed by 5:30 or 6 pm. Take care of you first otherwise you wont be there for him. You matter too! HUGS! Peg

Cristina, Only you and your husband can make that decision. I know we started this journey by telling our Dr flat out it would be about quality of life first. I do not know what your Dr's are telling you. Have you gotten a second opinion? I feel your pain. Go talk to a social worker @ cancer center. I lost my other mother to bone cancer last year. It was a fast downhill journey. Hugs & prayers, Peg

Michele, So far no luck figuring out who sent those people. Sooner or later it will show up. Lees cancer is I guess so far advanced that they are only doing chemo with him. Do not know about shrinkage yet. It is on my list of ??? for Dr on Monday. Actually weaker had an appt today with a colon & rectal surgeon. Seems he has a rectal fissure and it is quite painful. They really could not do a complete exam. Sent us home with more scripts and he is to return in 3 weeks or earlier if it worsens. Worse case they put him in hospital and knock him out to do a complete exam. They kept asking us about constipation. I told them the problem was diarrhea for the last 3 months before he was diagnosed with cancer. So even diarrhea can cause fissures and chemo makes it worse. We live in Southfield MI. I hope by chilling this weekend you do not have a revolving door for visitors. I just want one day not to do anything. One day at a time one step at a time....... I bet Tom would know why they did both sides. for the tattoo. Take care, Peg

This firm was sent supposedly by the cancer center. They were contacted by the social worker that I had spoken to. Because of his weakness he is crawling upstairs to go to bed @ night. I did buy him a walker which has helped a great deal. It is like no one is listening. No we are not ready for hospice yet. We are looking for options to make his life @ home easier on him. He has been lucky as far as pain goes. Just the achy bones that go along with Nuelasta injections and the pain that has been going on for weeks with the rectal spasms for which we are seeing Dr this afternoon. Thank God most of the places we go have valet and wheelchairs available. I have already called my primary care Dr and will talk with him as he has some better references for me. Peg

I have been told that someone would come out to do a home evaluation before we decide to start this process. No they jump in the door want me to sign ppwk and cannot even tell me what DR signed the order. I have also been told I am not allowed to be a caregiver. Just trying to figure out what they call what I have been doing for months? And they went around our primary DR. I could use some help or advise from someone who has traveled this path. Peg

Michele, I pray you get 3 complete weeks to regroup. There never seems to be that time between other Dr. appt and all the other stuff that comes up. Today I had GoDocsGo here for what was supposed to be a home evaluation to see what someone can do to help him. I was not comfortable with them and they wanted me to sign ppwk before they even got started. I have done a google search on them and they have some pretty crappy ratings. One person tells me one thing and another has a different story I am confused enough and do not need this. They could not even tell me what DR signed the order which really had the red flags flying. I had talked to our primary care Dr. yesterday and he was not even aware of this. So much for communication. He did advise me NOT to sign anything. There are SOOOOOO many scams out there. i pray your husband is settling down. I pray for God to give you the strength you need. Peg

Michele, Been a rough week and family just made it worse. Lee's fatigue is about double of what it was. I hope the side effects do not kick in for your husband. Some of them are pretty nasty. Keep us posted. Peg