DeanCarl Posted May 15, 2004 Share Posted May 15, 2004 As some have already commented on I haven't posted much in the last couple of weeks. The main reason for this my condition had deteriorated quite a bit in the last three weeks or so. Although this downward trend started just before my MIL got here I do not attribute much of it to her visit. We survived that visit quite well and are enjoying the peace of her non-presence. My energy level has dropped significantly. Instead of a 6 to 8 hours of an energy "window" each day I now have only 4 or 5 hours where I can get out and do things. Because of that I try to make sure I get out and about during those hours. Other times, especially the first thing in the morning and then again in the evenings I experience a LOT of fatigue and pain. I've upped my intake of pain meds (vicoden) quite a bit and that helps. I will probably be going on morphine in the near future (I've been holding off on that due to the addictive nature of the drug, but when I need to I will take it). I describe my fatigue this way. Think of the aboslute WORSE case of the flu you ever had. I mean that time when you were so weak you could barely lift your arms and didn't want to anyway 'cause it hurt so bad. Take away any fever or nausia you may have had and you get an idea of what it feels like for me. Again, this hapens mostly in the early evening hours (which is why I haven't been on the chat room lately). My shortness of breath has gotten worse also. Even minor exertion (like making my bed) brings on a lot of gasping for air and the need to just sit for a half hour or so, even though I'm using my oxygen almost all the time now. Emotionally and attitudinally (is that a word!? ) I'm still in pretty good shape. My goal is still the same, to live my life as well as I can for as long as I can. Little things mean so much more now than they did before. For instance, we have 3 rose bushes that are kinda growing wild in our back yard. A red one, a pink one, and a dark almost purple one. Well this year they outdid themselves. A ton of blooms and they were HUGE! Since our living room window faces the back yard it was a joy each morning to open up the blinds and see how many new blooms we had. They seem to be done for this year, but there's a big old poppy plant that put out some incredable bright red blooms last year and it looks like it's ready to get going. I'm looking forward to see what it comes up with this year. Don't ya'll get too worried if you don't see a post from me for a couple of days or so. I log on at least twice each day and am with all of you as we travel this road. I'm in pretty close contact with two other members plus Gay will let you know if anything happens and I'm not able to let you know myself. Not much else to say other than I'm praying for all of us. Dean Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 15, 2004 Share Posted May 15, 2004 Oh, geez, Dean. I just don't know what to say at all. I just feel bad for you. You are one of the strongest guys on this board and you are such an inspiration to others. You are facing this with so much bravery that it brings huge tears to my eyes. I don't even know you, but I love you with all my heart. I hope that you can stay very comfortable with the pain meds for a very long time, and I also pray that you will achieve your goal of enjoying each and every day. You are so wonderful, and I am so extremely sorry that you are experiencing pain, shortness of breath and fatigue. GOD LOVE YOU!!!!!!! Peggy Quote Link to comment Share on other sites More sharing options...
awpoint Posted May 15, 2004 Share Posted May 15, 2004 Gosh Dean, I sure hate that you are feeling so bad. I am glad that the Roses put on a good show for you. We are praying for strength and well being for you. Anne Quote Link to comment Share on other sites More sharing options...
Fay A. Posted May 15, 2004 Share Posted May 15, 2004 Dean, I'm just going to give you a heads up on the fact that Vicodin may be part of why you are experiencing increased fatigue. Vicodin can contain the drug Acetaminophen (same drug as Tyelnol). Acetaminophen is notorious for causing liver damage, even in healthy people. And one of the first signs of liver damage is profound fatigue, as well as muscle pain. You can get the same narcotic pain relief found in the Vicodin, without the Acetaminophen additive. http://www.nlm.nih.gov/medlineplus/druginformation.html Go to the above link for more info. Hope you are up and about with more energy very soon. Fay A. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted May 15, 2004 Share Posted May 15, 2004 Dear Dean, I am so very sorry that your play time has shortened. I know that Earl is exhausted almost all of the time - he really has no play time. No matter the outcome, we should all enjoy each day, each flower, each hug, each everything. Take care of yourself, visit as you can, but know you are in our thoughts and prayers always. Ginny Quote Link to comment Share on other sites More sharing options...
jamie Posted May 15, 2004 Share Posted May 15, 2004 Dean, Get well soon, and come back. I miss your postings!!! Jamie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 15, 2004 Share Posted May 15, 2004 Hi, Dean! Good to see you posting. Thank the Lord for roses and poppies! Glad you are doing what you can and enjoying what you can. Miss your good inputs. Don Quote Link to comment Share on other sites More sharing options...
Margaret Posted May 15, 2004 Share Posted May 15, 2004 Hi Dean, I hope you have some really good days coming your way soon. Cancer/chemo fatigue is almost indescribable...and I'm sorry you are experiencing it at this time. I enjoyed meeting you and Gay so much on our Survivors Get-Together and hope we might have the opportunity to do that again...you are a survivor and an inspiration. Very best wishes, Margaret Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted May 15, 2004 Share Posted May 15, 2004 HI DEAN,I'm sorry your not feeling up to snuff right now,but thank you for posting and letting us know how you are doing.I can relate to the fatigue but sort of like Fay said there is a possibility the pain meds are causing alot of that.Rest up and enjoy the good hours and days and looking forward to hearing more from you soon. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 15, 2004 Share Posted May 15, 2004 Ah roses - what a beautiful sight. How magnificent that you can see them and delight in them as you do. Life is full for you and you are a most extraordinary man. I pray that your pain decreases and that you continue to see the beauty around you. May God hold you in his hands. You are an inspiration for me as well as so many others. Cat Quote Link to comment Share on other sites More sharing options...
char1048 Posted May 15, 2004 Share Posted May 15, 2004 Hi Dean, Havent been on here all that long but I have enjoyed all your inputs sorry you are not feeling up to par and I wish I had seen your roses they are my very favorite flower and I have tried but I just cant grow them. Hope you feel better real soon take care post when you feel up to it. Prayers from the both of us. CHAROLETTE Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 16, 2004 Share Posted May 16, 2004 God bless you Dean. Peg Quote Link to comment Share on other sites More sharing options...
Geoff Posted May 16, 2004 Share Posted May 16, 2004 Thank you Dean, I'll be praying for you. Geoff Quote Link to comment Share on other sites More sharing options...
Rick Posted May 16, 2004 Share Posted May 16, 2004 Keep that upward attitude!! I sure hope you start feeling a better as we all miss you around here! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 16, 2004 Share Posted May 16, 2004 Dean, If there are things you need to say and are too tired to type them, call me and I'll post 'em for you. I'll bet I can type as fast as you talk (right, Frank???)... I'm sorry to see that your "window" is foggin' on the edges - let me know what I can do to help with the "I can see clearly now, the rain is gone..." attitude! Love, Becky Call me....(not tonight, though, I'm not home) I CAN SEE CLEARLY NOW - Jimmy Cliff (Johnny Nash) I can see clearly now the rain is gone I can see all obstacles in my way Gone are the dark clouds that had me blind It's gonna be a bright, bright sunshinin' day It's gonna be a bright, bright sunshinin' day Oh yes, I can make it now the pain is gone All of the bad feelings have disappeared Here is the rainbow I've been praying for It's gonna be a bright, bright sunshinin' day Look all around, there's nothing but blue skies Look straight ahead, there's nothing but blue skies I can see clearly now the rain is gone I can see all obstacles in my way Here's the rainbow I've been praying for It's gonna be a bright, bright sunshinin' day It's gonna be a bright, bright sunshinin' day Real, real, real, real bright, bright sunshinin' day Yeah, hey, it's gonna be a bright, bright sunshinin' day Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 16, 2004 Share Posted May 16, 2004 Dean, Thank you for posting. I am so sorry that your energey level is down. However, I am so in awe of you and inspired and happy about your spirit. I hope you know how much you are loved here and how importantyou are to all of us. We consider you, what is the word, the "patriorch" of this website. (If I used the wrong word, ho pefully you know what I mean) Love, Andrea Quote Link to comment Share on other sites More sharing options...
Budd Posted May 16, 2004 Share Posted May 16, 2004 Dean I also have missed you here! But maybe they can change the vicidon. From what they told me that's a short term pain medication. So that's why you'd feel that way in the morning and after it had worn off at night. They gave Chris oxycontin 40mg twice a day. Once in the morning and once at night. It's a longer lasting med, almost like timed release they said. He took hydromorphone for break thru pain if he needed during the day. That combination really worked wonders on his pain. I hope you're still enjoying your scooter now that the weather is getting nicer. You and Gay hang in there, and I'll light a candle for you both Deb Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 16, 2004 Share Posted May 16, 2004 (((((Dean))))), I am so sorry things are tough right now. You are in my prayers! God Bless, MO Quote Link to comment Share on other sites More sharing options...
Nushka Posted May 16, 2004 Share Posted May 16, 2004 Dean, I think of you often and admire , with all of my heart, your spirit. I hope if the time comes for me I can be the same way. I think you are a very brave and loving man. I am sorry you are feeling so much worse, we all miss you, but you are always in my prayers. Please take care of yourself and continue to enjoy the beauty of the day. Nina. PS. Glad your MIL didn't drive you nuts. Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted May 16, 2004 Share Posted May 16, 2004 Dean, Just want you to know that I agree with everyone else here -- You are an extraordinary man, and your posts mean so much to all of us. You are teaching me to live every hour -- or at least I'm trying harder. It's a lesson that is important for all of us. You and Gay are in my prayers and will stay there. BeckyCW Quote Link to comment Share on other sites More sharing options...
berisa Posted May 16, 2004 Share Posted May 16, 2004 Dean, I am so glad that you are spiritually strong. I mean your emotion. Stay positive and get the most out of each day. For the morphine, please take it if it is necessary. Pain management is important. This will affect the quality of life. The oncologist told me that addiction is not the first priority. Make the patient comfortable is the first priority. You have rights to be comfortable. I will pray for you Dean. Quote Link to comment Share on other sites More sharing options...
cathy Posted May 16, 2004 Share Posted May 16, 2004 Dear Dean, I am sorry your having a hard time right now... I just want to add that I think you are incredble and definately an inspiration to this family...((((DEAN))))) Quote Link to comment Share on other sites More sharing options...
karen335 Posted May 16, 2004 Share Posted May 16, 2004 Hi Dean, Glad to see you posting. I really enjoy reading your posts. Sorry to hear that your energy level is down. You are such a strong person and I know you will bounce back and Gay is there to help you. How are you kitty's doing? As Margaret said, it was great getting together. Bob and I would like to have dinner again soon. Maybe we can arrange that soon. Your house is a very tranquil and peaceful setting. I mean living on 32 acres of green grassy knolls is beautiful. You do have a lot of plants in your back yard and it would be nice to just sit there with a cup of coffee or tea and enjoy. You and Gay are in my prayers each day. Blesing, prayers and hugs, Karen Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted May 16, 2004 Share Posted May 16, 2004 Dean, May numberous small blessings keep flowing into your life, right past your window! Spring is exploding here... I hope you enjoy sufficient scooter time to keep you from going stir crazy. And a word of experience -- if morphine is the drug that works, there is no shame in it. I still take morphine for deep pain, it allows me to function normally, and without pain. go slow, you'll still get there. prayers, always. XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
TBone Posted May 16, 2004 Share Posted May 16, 2004 Dear Dean, I am sorry to hear that you have had a backslide and I pray that things get better for you.Please don't let the pain get in the way of enjoying the small things in life.I know you are hesitant about taking them but there really is no sense in being in pain at this point.I just looked and you had 502 posts on here.I think they should be compiled and used as a guide to life.Not just for cancer people.You are a great man and a true inspiration to me.I will make it a point for my kids to read your posts because there are so many things that you say in such an eloquent and simple way that all of us could use as guidelines for daily living.You cheer us up when we need it,give us a glimmer of hope when it seems none is there to be had and just as importantly you chew our a--ses when we get off track and need it.I love all those things about you and I look forward to seeing your name on a post.I had tried to describe my radiation fatique several times and could not come up with what it really feels like.You hit the nail on the head although yours is not radation related.Praying for us all.TBone Quote Link to comment Share on other sites More sharing options...
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