jendew Posted July 5, 2006 Share Posted July 5, 2006 Daddy goes from fine one day to awful the next. He's had some wonderful pain free days lately since they increased his dosage of methadone last week. Yesterday, though, I noticed that he was getting very weak. Today was even worse. We called the doctor, and they told us that they couldn't tell us if he was beginning to have a life threatening issue over the phone (duh!). They suggested we take him to the ER for evaluation. Well, he didn't want to go so we're waiting until in the morning. I hate knowing that this could go on for months yet. He's supposed to start the Alimta on Thursday, but I don't see how. He's just too darn weak. I abhor the ups and downs associated with the disease. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 5, 2006 Share Posted July 5, 2006 What else has Dad been treated with? Any radiation? the ups and Downs and the waiting for results are the worst. This disease gives us a new everyday Normal. Lives change. Each day dawning is a new and special day because we got up this morning. Even though every day is hard we are blessed to enjoy things that a new day brings; Well at least for me anyway. Is a second opinion possible for your Dad where you are? If Alimta is theonly thing he is being treated with I would wonder. There are a lot of treatments out there and Trials which have helped some people. Let us know about treatments. sending prayers for you and your Family during this troubling times. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 5, 2006 Share Posted July 5, 2006 I am hoping that you have him into the ER by now. There are so many "things" that can cause weakness. It is not fun to go through this, jen, but it is doable. I had many many rough days and weeks and never gave up. Don't you or Daddy be giving up either. It is easy to talk yourselves out of an ER trip, but I can assure you, that it is better to be there than not. They are brilliant diagnostitians. Hang in there. Many hurdles, One at a time. Don't look to the future and all of its problems. Deal with today only. That is enough, just today. Cindi o'h Quote Link to comment Share on other sites More sharing options...
jendew Posted July 5, 2006 Author Share Posted July 5, 2006 Yes, he's had all of the radiation he can have. Six weeks of daily radiation. He's on full time oxygen at home,and the disease seems to be progressing quickly so I'm thinking it may be time to increase the oxygen. We're taking him in this morning. Quote Link to comment Share on other sites More sharing options...
kamataca Posted July 5, 2006 Share Posted July 5, 2006 I hope you'll get some answers soon, and a plan to help your dad out. As for how do we do it? Well, for each of us it is different. I tend to be a "cry in the car solo along with sad music" when I need to kind of gal, then pull up the old bootstraps and move on. It's rough, but I have become very good at it! Find what works best for you. Certainly coming here and venting whenever I need to helps as well. Just remember to take care of yourself along the way. Take care, and keep us posted! Kelly Quote Link to comment Share on other sites More sharing options...
marym Posted July 5, 2006 Share Posted July 5, 2006 The ups and downs come with the territory. As one of the patients, I feel it's worse for my family. They want so much to help me or make me better - this disease has a lot of victims. I hope they find the problem and can alleviate it. I'm okay with being tired and even minor pain - but I need to be able to talk, read, be alive for part of each day! Best wishes. Mary Quote Link to comment Share on other sites More sharing options...
missyk Posted July 5, 2006 Share Posted July 5, 2006 Jen... Like Cindi said (she's so full of it....good advice that is ) take one day at a time and if you need to, take one hour, or one minute, at a time. It's a hard thing to learn to do when, if you're like me, always looking to the NEXT thing coming so you can be prepared for it. With this disease there isn't any real way to prepare for what might be next because ya just never know. For me, it's writing, writing, and writing some more. I have two blogs that I post on regularly (I don't care if anyone reads it or not LOL) and in between I write out every single frustration, every bit of anger (because that sneaks in too), every bit of happiness, on a "journal" on my hard drive on my computer. It allows me to "speak" honestly and truely with, if no one else, myself...and get rid of those feelings I don't want and remember and relive the ones I'd like to keep. I also went and saw my doctor and she gave me a perscription for xanax. I'm kind of an insomniac anyway (and of course, this disease doesn't help any with that)and I stress about thunderstorms...add on top worry and loss of control surrounding Mom's disease and I was a freakin MESS! LOL Now, when my stomach starts lurching and I feel like I'm about ready to lose it...I "take a pill". I hope your dad is feeling better and getting a bit stronger. Much love and many prayers... Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted July 5, 2006 Share Posted July 5, 2006 The "ups and downs" of this disease are gut wretching for sure. Lots of great advise already given -- especially one day at a time (or hour or minute depending on the event), I found this to be a very essential to day to day survival! Another great piece of advice that a friend who lost both his parents within a year gave me...spend AS MUCH time with your Dad as you possibly can! Every moment will become a treasure (even the "down moments" though they may not seem such a treasure now). Truly allow yourself time and space to feel and cope with the "ups and downs". I found that I really needed to be in Az with my Dad during the "down" times, while I was ok being at home in Oh when things were on the "up" swing. With this disease things can turn on a dime at any given moment and I just plain handled the down swings better when I was there and could deal with them in person. Praying that your Dad gets a break from the pain and is able to regain some strenght! Hang in there..I know how hard this!! Cindy Quote Link to comment Share on other sites More sharing options...
ma's kid Posted July 5, 2006 Share Posted July 5, 2006 Jen, I see that you wrote that your dad went to the ER this am..please keep us posted. You've been given some great advice about dealing with the ups and downs of this horrible disease. For me, coming *here* helps and I also do my share of crying when no one is around. My mom is on a schedule of repeat CT scans every three months and my personal *new normal* is life is in three month increments..which is so strange. I cannot imagine how it is for the patient Jen, take care of YOU Lots of prayers for your dad and your family Libby Quote Link to comment Share on other sites More sharing options...
jendew Posted July 5, 2006 Author Share Posted July 5, 2006 Well, we went to the cancer center...not the ER. The doctor this morning just said to bring him there instead. Good news. His bloodwork is great, chest sounds great with good exchanges. The only thing they figured out is that the pulmonologist that prescribed his last round of steroids didn't wean him down gradually enough. He was on four a day, then three a day, then two a day and then stopped abruptly on Monday. The oncologist was quite upset at that, and they gave him IV steroids today to build him back up along with a new prescription of steroids. They said he should feel much better by tomorrow when he's scheduled for his first round of Alimta. Also good news is that we were told that most of their patients that are on Alimta seem to be doing really good and feeling much better. That was wonderful news today. It made the whole visit worth it. Missy...it's funny you mentioned writing on a blog. I started one up a while back and started posting on it more a few days ago. I also have a great support network of online friends I met three years ago when I was pregnant with my little one. In fact, I've met a lot of them in person. They've been listening to me for so long now that I decided that I needed to find a lung cancer support community...and here I am! I also have my church family that has been there for all of us. I live next door to my parents so I am able to help every day. I have a wonderful husband who works two jobs so that I can stay home with the kids and help with Daddy. He realizes how important my time with him is right now. I also am going to my doctor next week, and I'm going to ask for an anti-anxiety med. I've never really had to take anything like that, but I think I need it now. I have always been extremely close to my parents, and am very thankful that God gave me the wonderful parents he did. Anything I do for them now will never repay them for the wonderful memories that I will carry with me forever. I think the hardest part for me is that my mother is a 14 year breast cancer survivor. She had the mastectomy and went through chemotherapy and has been cancer free since. I guess somewhere in the back of my mind I was thinking the same would go for my father. Then came the recurrence. I never really thought about what happened if it came back. I guess I never really believed it would. Thank you all for your support. You don't know how much it means to me. Quote Link to comment Share on other sites More sharing options...
missyk Posted July 6, 2006 Share Posted July 6, 2006 Jen... WHEW!! Hopefully weaning him off the steroids a little more gradually will take care of it!! Now, take a deep breath....let it out...and get ready for the next thing, whenever it comes. LOL I'm so glad that you have a network of people around you that can support you. I've found that, too, in the friends I've met online (and alot of them, too, in real life!). I was truely surprised, as we began our journey, how many people jumped right in behind us to help us along...many not knowing "Mom" other than from things I've talked about! I have been truely blessed by those friends, as I am by the people here who help me every day without knowing. Much love and many prayers...I'm gonna send you a message here in a minute... Quote Link to comment Share on other sites More sharing options...
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