DeanCarl Posted February 28, 2004 Share Posted February 28, 2004 I haven't posted much on how things are going with me physically lately. Mainly because I was concentrating on other things like getting my finances and mobility issues squared away. Well all that is taken care of for now, so: Today marks four months since I was diagnosed with cancer. I went into the urgent care at first due to symptoms of pneumonia but went back due to experiencing fatigue and muscle weakness. That was Sept 26, 2003. The final diagnosis was given on October 26th (I think. Close enough, anyway) and at that time I decided not to aggressivily (sp?) treat my disease, opting for quality of life over quantity. Four months later I do not, in any way, regret that decision. It's taken all this time, but now all I have to do is live my life the best I can each day. I've taken a bit of a downward turn the past couple of weeks. My legs hurt almost constantly now and I guess it's time to think about selling the car and rely on my scooter and public transportation. I drove Gay to the grocery today and waited in the car while she did the shopping (then used the scooter to haul the groceries into the house! ). Even the little bit of walking I did caused a LOT of pain in the major muscles of both legs. I'm going to talks to my hospice nurse this tuesday about going on more potent pain killers. Currently I'm just using tylonal and ibuprophen and have resisted stronger meds, knowing I'd have to give up driving. My breathing and coughing have also gotten worse the last week or so. It takes VERY little effort to light off a major coughing attack and I'm on oxygen about 50 percent of the time I'm home and ALL the time when I'm out and about. That's a lot more than I was using it just a couple of weeks ago. I'm beginning to feel a bit like the Cat Stevens' song "Moonshadow": "And if I ever lose my hands, lose my plough, lose my land, Oh if I ever lose my hands, Oh if.... I won't have to work no more. And if I ever lose my eyes, if my colours all run dry, Yes if I ever lose my eyes, Oh if.... I won't have to cry no more. And if I ever lose my legs, I won't moan, and I won't beg, Yes if I ever lose my legs, Oh if.... I won't have to walk no more. And if I ever lose my mouth, all my teeth, north and south, Yes if I ever lose my mouth, Oh if.... I won't have to talk... " Lost my hair when I was 45. Lost my teeth and 20/20 eyesight 5 years later and now the legs are going. Through this I guess I'm doing as well as can be expected. I get the "downs" at times, especially if I'm stuck inside the house for more than a day or two. The weather shows clearing for the next week so I'm hoping to start a new "Shaffer tradition" of going for a morning "roll" each day. My hope is getting out and getting some "natural" vitamine C into my life (i.e. SUNSHINE!) will help kick the blues I've been in the last week or so. I guess what I'm saying here is that I've reached another "plateau" on this road I'm on. Each time I have to make a decision about changing my life around it reminds me WHY I'm making those changes. I don't think about having cancer all the time. Or where this path is leading. But sometimes it kinda gets thrown in my face and I have to deal with it. I'm not real fond of those times. Dean Quote Link to comment Share on other sites More sharing options...
paddy Posted February 28, 2004 Share Posted February 28, 2004 Goodness Dean!, I hate to hear you so low! You are usually so upbeat. I hope the sun will come out soon, and stay out, so that you can get out in it and chase away the blahs! So sorry to hear about the pain in the legs too, I hope they can find something that will help you with that. Paddy Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 28, 2004 Share Posted February 28, 2004 Dean Carl Glad to see you here. I sure hope you can get some natural vitamin C a.k.a. sunshine! You are truly missed when you are not here! Hope you have a blessed day! Angie Quote Link to comment Share on other sites More sharing options...
Joe B Posted February 28, 2004 Share Posted February 28, 2004 Good to hear from you Dean... we've missed you around here... Those morning "rolls" sound good Joe Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted February 28, 2004 Share Posted February 28, 2004 Dean, I've been thinking about you all week, and today I thought, "Maybe the sun is out in San Diego, and Dean can take the scooter out!" (It was beautiful up here, with dark clouds AND sunshine, both at once, but NO RAIN.) I'm glad you did get out, but sorry to hear about the new limitations you're facing. You seem to handle everything with such amazing grace... but I can't imagine that anyone can handle it that well ALL the time. While you have a right to be depressed, I hope you don't stay that way long. You also have a right to be happy, to feel the love of your good woman and all of us, and to live every day to the fullest. I love Cat Stevens, and that's one of my favorite songs. I will forever think of you now when I hear it! Praying for you and Gay, BeckyCW Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted February 28, 2004 Share Posted February 28, 2004 Hang in there Dean. I know how depressing the rain can be when it keeps you in but it can't last much longer. This is California after all. I'm really sorry to hear that you are having more problems with symptoms. Hopefuly something can be done to help with those and still allow you to remain mobile. I know it has to be very hard for someone who is so used to being independent and on the go a lot. Your attitude has been and is an inspiration to all of us here. Bless you and give you many days of sunshine and no more problems to deal with for a while. Make every second count and know that you are in my thoughts and prayers. Lillian Quote Link to comment Share on other sites More sharing options...
TBone Posted February 28, 2004 Share Posted February 28, 2004 HI Dean, It is good to see you posting again.The wet weather has me all blue and down too and I am not immobile.I can't imagine being "trapped" for a few days like you have been.It is supposed to be sunny here today and tomorrow.I plan on spending some time out in it to get a refill of that natural Vitamin C too.I hope they can give you something to ease your leg pain.Keep on smiling.Keep on scooting.And keep on posting.I hope you have a wonderful weekend.TBone Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted February 28, 2004 Share Posted February 28, 2004 Dean, I can imagine it must be difficult to ignore looking where the path leads. I'm sorry to hear you're having more symptoms. Pain sucks. Pain is not your friend (when you're in a situation where you KNOW something is wrong and/or can't fix it). Pain is depressing. The pain needs to go. I certainly understand and admire your reasons for not wanting to up your medication (my husband is a non-practicing alcoholic), but it sounds like it's time to call in a bigger gun. You can always back off the meds if you hate the side effects. Hope you feel better soon. And sunshine will certainly help! Quote Link to comment Share on other sites More sharing options...
betplace Posted February 28, 2004 Share Posted February 28, 2004 Dean, Wishing you blue skys and sunny days so that you can enjoy that scooter! When it smacks you in the face, stick your tounge out at it and give it a raspberrie! Then keep on Truckin! Seriously, though try to keep your spirits up Dean. I find I deal with it better if I refuse to give the beast too many tears, it gets some because I am human, but not many if I can help it. Glad you got out for a bit and hope the new meds help as well. We miss you when you aren't here. Blessings Betty Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 28, 2004 Share Posted February 28, 2004 I personally don't think you are taking strong enough meds for the leg pain. If you got the pain under control, you might be able to walk a little more and that would strengthen the legs and possibly reduce the pain as well. Think about it. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 28, 2004 Share Posted February 28, 2004 Dean, so sorry about the leg pain. I hope you can find someting that lessens it yet doesn't make you a zomby. Know what you mean about the gray day. A snshine fix does wonders. Miss you when you aren't on the board. Prayers for better days. God Bless Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 28, 2004 Share Posted February 28, 2004 Hi Dean - I read your post with much compassion. I so admire your strength to deal with everything head on. You are so much stronger than I ever could be... I have a question for you though.. I know you have made peace with your decision about treatment, but how did "does" your wife feel about it? I am asking this because I know I would have a really hard time with it - and for purely selfish reasons. I am just curious to know how she has come to terms with all of this. Maybe I can gain some insight. I am wishing for blue skies and warm breezes for you. Love, Sharon Quote Link to comment Share on other sites More sharing options...
glo Posted February 29, 2004 Share Posted February 29, 2004 Hi, Dean - Sorry to hear you're feeling down. I agree with Don that if you could take a better pain med it might make a lot of difference. I know that before Chuck went in the hospital it was so important to him to be able to drive. Like Gay, I don't drive, for various reasons. Luckily, my daughter lives nearby and we have several neighbors who are longtime friends, and so we could get to the doctor, pharmacy, grocery store, etc., but he would still rather take less medicine and be able to drive himself. You might check with the doctor. I think some of the patches might still allow you to function, but with less pain. Can't hurt to ask. I believe my brother-in-law who has had multiple back surgeries is on the Duragesic (Fentanyl) patches and is still able to drive. You have had tremendous strength of will to carry you this far and stay so upbeat and helpful to others, and I'm sure with a little sunshine, you'll be back on track again. Meanwhile, please keep posting and let us try to be as helpful to you as you are to others. Gloria Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted February 29, 2004 Share Posted February 29, 2004 Hi Dean- Glad you are able to get out in the sunshine when you can. Here in the midwest we have had 2 days of blue skies and sunshine-a much needed blessing. As for the pain meds. I have been taking darvocett for the bone and muscle aches for awhile now. After the first few weeks I did not have the side effects of being tired anymore. On the contrary, I actually felt more energetic. I can get around faster, and I sure get more done when I am not in pain. Go for it. Have fun boot scootin around the neighborhood Quote Link to comment Share on other sites More sharing options...
TAnn Posted February 29, 2004 Share Posted February 29, 2004 You certainly have the right to feel down every now and then. The pain will definately make you feel depressed. Talk to your dr. for better pain management. I agree with you though, I never want to take their narcotic pain meds, just give me an advil. However, we need to accept that sometimes we need something stronger. Here's hoping for a better tomorrow with lots of sunshine. Keep posting - if this group can't cheer you up, I don't know what can TAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 29, 2004 Share Posted February 29, 2004 Dean Sunshine raises the spirits. Living in N. Illinois, I use lots of the coiled fluorescent bulbs to supplement old Sol. I have about 500-watt equivalent light output in the bathroom for instance. Some people use a light box to stare at in the AM to keep off the blues. I stuff 4 or 5 of the 100 watt equivalent bulbs in all my fan chandeliers. I agree with your philosophy concerning treatment. After getting real low from the chemo, I declined the 30 radiation treatments because it would destroy my esophagus, which already plagues me. My wife liked to quote the John Wane line, “Everybody has to die of something.” But not just yet please. SCLC has a bad reputation to come back, however I am going to enjoy any remission without daily torture even if I lose a percent of some hypothetical statistical survival time. I joke that it is too late for me to die young, but I did have to gave up booze, and cigaretts. I have been off the oxygen since my double transfusion but I keep the machine. Dragging an oxygen tank is enough to dampen the spirits. How about putting a plastic dropcloth over your scooter and chancing the rain if it isn’t pouring? I was given a painkiller called Tramidol, but it can’t be very strong, since my internist gave me the script without an argument. Keep on absorbing those sunrays Dan Quote Link to comment Share on other sites More sharing options...
janet Posted February 29, 2004 Share Posted February 29, 2004 Heya Dean, I know what you mean about the "blahs" the weather up in the Bay Area stinks too. How about renting some really stupid comedy and just forget about "real life" for a few hours? Maybe just getting out to Starbucks for a cuppa coffee might help. Sometimes a change of scenery is all it takes. One of my favorite things to do is go to a kids movie, just sitting there listening to the children giggle makes me happy. They are so pure and innocent, they really know how to enjoy the small things in life. As far as the pain meds go, I would try something a bit stronger to get some better relief, no body expects you to manage severe pain on your own, and you shouldn't have to. Check into it. Take care, janet Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted February 29, 2004 Share Posted February 29, 2004 Dean, I sure hope the weather turns for your morning rolls. I am looking forward to some nice weather here in the east as well. Nothing like getting outside in the sun to do the mind good. Hang in there buddy and keep us all informed. David C Quote Link to comment Share on other sites More sharing options...
Lisa O Posted February 29, 2004 Share Posted February 29, 2004 Dean, I sure hope you get that pain under control. It sure can ruin everything! I love the Moonshadow song... and it does seem particular appropriate here. Well you sound like you have the next step planned already. I will pray that the pain control is exactly that - "pain control" with as little life disruption as possible. Lisa Quote Link to comment Share on other sites More sharing options...
Nancy O. Posted February 29, 2004 Share Posted February 29, 2004 Hi Dean. We have finally had a few nice days here in the burbs of chicago and I love it and started cleaning up the garden, just to get some sun. To me the sunshine is so healing, if not of the body, than the spirit. Hoping some sunshine is coming your way. My thoughts and prayers are with you also. Love Nancy O. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 29, 2004 Share Posted February 29, 2004 Dean, I am praying that you get your pain under control, and that warm weather will allow you the opportunity to zoom in the sunshine on that scooter. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted February 29, 2004 Share Posted February 29, 2004 Dear DeanCarl, I, too, have not been posting very much lately. One reason is we had a power outage last Wednesday and I did get things back up until last night. I guess most importantly, is I do not feel I can be of much assistance to anyone right now. I do pray for everyone and wish each to be a survivor. You, on the other hand, are an inspiration to this board. It has taken me only a brief time to see that. You are needed when you feel up to posting. I so admire you strength and courage in dealing with this dread disease the way you have. As I look back now and of course knowing what I know, I ask how many of those extra days that Sam was given, possibly because of chemo and radiation, could be called quality days. The side affects of both certainly take their tolls after awhile. We just do what we think is best at the time, then hope and pray. There are certainly stronger meds out there besides ibuprofen and tylenol for pain relief and will not necessarily zonk you. No reason not to ask Hospice. Hope you will be feeling better very soon. God bless us all, Sam'swifeShirley Quote Link to comment Share on other sites More sharing options...
norme Posted March 1, 2004 Share Posted March 1, 2004 Dean, God loves you and all of us do to. Thanks for posting on mine the other day for I needed to hear from you. I know Buddy will enjoy seeing you at the bridge whenever that time comes. I love you Dean. You are a very courageous man. Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 1, 2004 Share Posted March 1, 2004 You have truly blessed us all. I can't tell you how many smiles and laughs I have had because of you. Not just from things you have written, but because I know that if you saw me all sad and mopey you would think less of me. THAt's how much you mean to me and to others I am sure. Elaine Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted March 1, 2004 Share Posted March 1, 2004 Dean I am so relieved your posting again. I missed you and was worried. I am so relieved to see that your still willing to express yourself to us and impart the wisdom upon us. I can't tell you how much I look forward to it. I am sorry I am posting so late, dad has not been well and he takes ALL of my time now. please stay in touch. Quote Link to comment Share on other sites More sharing options...
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