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DeanCarl

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Everything posted by DeanCarl

  1. Dear Family, Dean left a bit sooner than expected; I am posting his "wish" as there is no formal Memorial Serivce; his ashes will be at Ft. Rosecrans in a few weeks - with a bay side view of the ocean( a friend may be giving Dean's ashes and me a final motorcycle ride as Dean was a "Biker", too). I'm having one on one Individual Memorials in our home; remembering Dean from their perpective -how Dean touched their life = very healing for me; as we were a very private couple and Dean said: "Memorials are for the living" and I told him my plans for Memorials - have had 2 imprompto Memorials thus far and during the one with my Therapist (who became Dean's/my Therapist after "the fire" and he had wanted her here to help him "go"; she is one kool lady - happened to answer her office phone line, just after Dean passed) offered up the planting of a tree in our garden; in remembrance of Dean. I know Cancer is at a great financial cost as well as physical and emotional cost/termoil, too. (we were blessed to have some VA benefits and a more than wonderful VA MD who startd Hospice a year and 1/2 ago). I can only suggest donating in DeanCarl's name to lchelp to keep this wonderful healing place afloat. It was Dean's "lifeline"; and he was so grateful to give and recieve so much from lchelp. Here's "Dean's wish" (for such a simple/complex man: "Go to your favorite chair, restaurant, park or wherever you are most comfortable; with a beverage of your choice; and raise a Toast: "To a life well lived". Dean truly lived life with great passion; through whichever/whatever endeavors; his music, artwork or the newest "interests/projects" at the time and was always willing to lend an ear on lchelp. Dean lived life with Cancer: One day at a Time. Dean also believed in the following statement: Life is not a journey to the grave with the intention of arriving in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming - WOW - WHAT A RIDE!!! Please Celebrate Dean's "Ride"....... And - Whoa what a "ride" I've been on for 7 days -I've been catapultued into a very busy life; trying to roll with the punches - One day at a time. It's been one week since my best friend and partner in life, of 21 years, DeanCarl crossed over to the Rainbow Bridge - greeting beloved friends from this board, along with his parents and with his Beagle puppie, Duke and my/our Belle Michelle cat. Dean's departure was much sooner than predicted (He did warn me that this wicked disease could take any and all twists and turns) - I had a "2 minute warning" that he was "going to go" - (we thought we had a 2+ week "plan") as he had just been put on Continuous Care at 4pm on Sept 6th and another relief Nurse was to come at Midnight to 8am; so I could get some rest. After a private phone call to my "been there friend", who has given great loving support in my understanding the process of Cancer along with other interests we have in common; I checked in on Dean; he had just had a bed bath and had been groaning a bit. I crawled into the hospital bed and told Dean that I'd update his daughter, next - but; Dean was very drugged and was "trying" to speak to me...no real "words"; but I understood that he had was done on this earth; I spoke to him calmly as I could and kissed him and stroked his head - hope that eased his brain. The Nurse then informed me that: "Dean was going to go in about 2 minutes". Dean left this earth at 8:24pm on Sept 6, 2005. He now resides at the Rainbow Bridge; out pain and at peace. We made a well thought out choice as to a 2 week "plan" the week before of pain management starting Sept 5th - heavily medicated to relief his pain during Week One and then suppose to have been Twilight sedation - taper off pain medication during Week 2 and take it from there. Dean had said that he "was impatient to be out of pain" - and Dean could be impatient at times. So; the Hospice "plan" didn't "fit" Dean's style. (And it's hard to "fit" Dean into any plan; as he was an "original"). There's a line in a new Country song (don't know the title or artist)that Dean pointed out to me: "If you want to hear God laugh; tell him your plans". That line "fits" right now. The rest of this letter is a "Gay update" as I had computer problems over the weekend; as I tried to Post "Dean's Wishes" as soon as possible. My dear love is on a journey without me; for now: I miss him; yet am hurled into life's business- one very busy week has passed (complete with a trip to the ER on Monday; as I had a glacoma scare - woke up yesteday at 4am with throbbing pain in my left eye - could barely read my MD's # by 6am to call the Triage Nurse line at my little Clinic in Alpine -saw a Nurse Praticioner by 9am; (found out my regular wonderful MD no longer works there) - she scared the hell out of me; saying: "If I don't get a glacoma test by today; I could be blind by tonight". So; I scrambled a bit as to a "decision"; my regular (now former) Optometrist couldn't get me in until Thurs; and I needed an Opthomologist, anyway and I don't mess around with my sight (I sew a lot and make gifts and sometimes sell (would rather give) tote bags and misc crafts, etc = "GayCreations") so I got a ride to the nearest ER, 2 towns over (20 or so miles) by 2pm. They called in a Specialist by 7pm who said my eyes were extremely dry - no glacoma in my eye that still was hurting; but he was very concerned about the other eye (could be start of glacoma) and he referred me back in a loop to a Opthomologist (Thurs appt) in Alpine. I also asked for a catscan to be done (results = no tumor; just cats at home); as I developed a Migraine in the ER; and with my Psychotropics I'm on; I took the opportunity to have my brain looked at. It was a very long day/week. Now my computer time is limited; (can't see very well with the ointment given and need to rest my eyes) but wanted to Post "Dean's Wishes" (had trouble logging on as "Gay" this weekend -Ry said this Post may come up "from Dean" and it might be nice for people to see his photo one last time - will send a "Happy mugshot of Dean" - taken 3 years ago; before the Cancer to Ry and - to maybe scan and upload it for me for his obituary (Thank you Ry and KatieB for all of your love and support and asking someone to Post the Rainbow Bridge - I am teaching myself "stuff" on the computer. (Hope I'm not asking too much of you at this time). Just logged on to find that there may be a Calendar in the making of Dean's artwork - wow!! Will contact Frogdog and see what needs to be done - as I'm not on 3DCommune much. Would love a calander made up. Enough for my eyes tonight. This afternoon, I took my 1st really rested nap in 23 months = 6 hours; really zonked out (and didn't set my alarm clock right for a short nap; as I told my friend I'd call her this eve); my body finally told me I needed a long nap. I'll be back to lchelp and hope to lend my support, especially to the Cargivers even though I'm not good in group dynamics; I am a good listener and could impart some of the "tricks and timesavers" in care of a loved one. But I neverlearned to "detach" - as I loved Dean so very much. Next up is finding a job in about 3 months; my field of choice is working with Alzhiemer's patients - wish me luck; yet must continue to find some time for myself and simply "breathe". Thanks for listening, Gay
  2. Hi Family, DeanCarl would like to express his gratitude for all of your loving Birthday thoughts. It was a "day" spent in bed while the world whirled around us; a bit tiring; but even with his low appetite ("nothing tastes right"); he enjoyed a lot of his favorite Beef Stroganof and will work up to some deep dish blueberry pie, soon (or it's all mine : but it's better than Hospital food....... Dean is going into the VA for a week of testing/restaging (and some "time off" for me). There is the scary thought of Brain mets or was it too much Vicodan for too long? (We called it "Vicodan brain talk" - dreamlike; not totally based in reality; but I would be able to "steer him back"; as his brain, these past few months would "wander". He's been off Vicodan and has been on Oxecodone for about 3 weeks and is much more alert; though I read your posts to him as he is too weak to walk to the computer. DeanCarl is very sad he doesn't have the energy to compose his thoughts; much less type to express himself on this lifesaver of lchelp board (this was (is - as I speak for/with him to you)his only lifeline; as family and friends seemed to simply turn away at the word "Cancer"). DeanCarl's burns healed up quickly (just two nasty burns on his fingers still need tender loving care - he grabbed the canula while his face (nose and mustache was on fire - his long beard did not even get singed; nor did any clothing or his bed catch on fire - we were very lucky) - yet what really got "burned up" for a short while was his "Faith"...his core belief system went up in flames; but his beliefs are back and stronger than ever. We were given second chance; more "us time"; so he wouldn't "go out" in a "not so flame of glory". Dean hopes to "go" peacefully; at home with 2 cats and me having the courage to "let go" - I read somewhere that: "I must love him enough to let him go" - not an easy thing to do with a husband and best friend of 21 years...life will go on and Dean and I have a "date" (at a time not of our choosing) at The Rainbow Bridge (our vision of Heaven). The Reality has always been Dean's Cancer is Terminal (Stage 3A; now 22 months ago (as of 7/26/05) - Rough time (yep) estimate was 8 - 15 months - (never believe what you read or hear - he's still here - positive thinking Does work). There was no surgery option due to heavy lymph node involvement. We may be dealing with end of life issues; soon - trying to "prepare ourselves" as best we can; as we have been all along, for whatever or whenever is thrown our way. Though DeanCarl's body is very weak; he still lives his life with Cancer - One day at a time. He is not perfect at it; he is human and has his good days and bad, frustrating days, too. I'll give updates (at least through Ry; my telephone Angel) as soon as we know more about DeanCarl's test's results. Prayers, please for "serenity" this coming week while Dean is in the VA; as hospital stays are no fun; but hopefully we'll gain better insight into his physical health. Thank you for listening. Gay (wife of DeanCarl)
  3. Hi Family, Thank you for your loving posts - You are truly Dean's only family members besides me (and his daughter who calls once a week - he had a chance to be a Dad for 7 years and she moved back to WA in Jan 2004 to live with her Mom - although she is in Denial of Dean's Cancer). Dean also had a second chance, in our minds, of not leaving, yet. And by not going out in a blaze of fire. It was/is traumatic. We are healing. The hospital bed arrived June 15th and June 16th 2005; we made it to our 21st Anniversary (last year KatieB said: "Why not go for 21?" (Right-on KatieB!!!). At that time Dean's "goal" was to make it to his 25th Sobriety date on Nov 22, 2004 - which seemed like a long time away. We were so shortsighted about the possiblites of the "when". And thank God, the "accident" was not the "when". Dean has outlived the kinda parameters given of 15 - 18 months; he reached his 21st month Survival date on the date of the "accident". We are truly blessed. Dean is able to see and hear his birds (especially Mr. Bobble Head Bird who greets him each day) through our livingroom window in our Heaven on earth in Alpine, CA, since he spends his days in the hospital bed (along with our 2 cats "guarding him" and comforting him, too). Thank you all so much for caring. I'll post further updates as time (and energy) permits. Thank you Ry for all you've been there for us on the phone (with all you got going - you are one fantastic lady) and for posting a msg to let all you wonderful folks know Dean is ok. You are his family and lifeline. Gay (wife of DeanCarl)
  4. If you're friend has been dx'd terminal check into getting hospice involved as soon as possible. Also, if where you live has programs that send folks into the home to help with cleaning, laundry, driving to and from dr. appointments check those out right away. Your county or state social services office should be able to get you on the right track. Dean
  5. Well, the wife snitched on me, which is, of course a wife's perogative so I figured I might as well update myself as best I can. Two major problems now are extreme S.O.B. (we're talking take two steps and stitting down for 10 minutes ... and this on full oxygen), violent caughing that can go on for hours, and emotional upset like I've never had to deal with before (usually extreme sadness). Tomarrow is my hospice visit and I'm going to have to ask for help showering. Another thing I can no longer do for myself, along with making my own lunches and snacks and such. They are also bringing in a hospital bed to make my time in the living room more comfortable. I also have the hospice counseler comming over on wednesday. I guess this is the much needed lesson in humility I've needed for so long. But it's really hard for me. I've been the independant, stubborn Norweigen all my life and I hate haveing to ask for a glass of water. While I'm thingking about it, God bless and all my prayers to those of you who have to travell this journy without access to the pain meds that work so well for me. I don't have to ask if I could do it or not. I know I could not! Any little strength of spirit I may have left over is yours to use. On the up side (yes, there is one) we've had a warm sunny spring and the birds in my back yard have just exploded in number! Jay's and finches and waxwings and warblers and you name it. Along with my fovorite: Bobble Head Bird! Bobble Head Bird is a purple finch that likes to sit on the top of the bird house/feeder, throw his head back, open his mouth as far as he can and just SING and SING and SING. Pretty soon his head starts doing that bob and weave thing birds do and he's still singing away! It's like he's saying "I'm the happiest bird in the WHOLE world and I want EVEYONE to know it!!!". Sometimes he'll be there for an hour or more. I love it. Well, that's as much as I can do for now. I'm suprized I was able to write that much. I think it's the stength I draw from the folks here that alows me to do more than what I think I can. God Bless all. Dean
  6. Welcome, Shadowrose, to our little "nook" amongst all the "crannies" on this board (I'M JUST JOKING!!! ) Please feel more than welcome to share your experiences along this path we walk. And know in your heart you never have to walk it alone. Dean
  7. DeanCarl

    Our Betplace

    A friend has travelled on ... and I greive. A friend has travelled on ... and I rejoice. Dean
  8. Bill, Got a clue for you. The time you are going through right now, no matter what happens from here on out, is the HARDEST part. That's right. You get through these first few days and weeks you've done the hard part. Why? Because right now you know NOTHING about what is going on inside your body. Soon you will know and will know what you're going to do about it. Other times along this path may be difficult, but not as hard as this part. So do the ol' "hang in there" thing for a bit, stay close to the people here on the board and WE will get through this. Dean
  9. Hey Claire, I'm still smoking also. And not recieveing any treatment for my cancer. And, so far, have lived 4 months longer than the docs said I would. So drop that silly attitude and come on over a set a spell. Kick back and enjoy the wonderful folks that habitat this place. Now that there was a personal invite. Dean
  10. Lots of new folks (unfortunately) since last I posted. I haven't updated lately because there hasn't been anything to update ... until last week. I've been on O2 on a prn basis almost since the start of my dx. Realy haven't had to use it much at all. But Thursday around 2pm I suddenly started haveing a lot of trouble exhaling. I mean a LOT of trouble. Felt like I'd just finished a mile run and all I had done was walk to the bathroom and back. So I used my combi-vent inhaler and got on the O2 real quick. In a few moments I'd gotten my breath back. Took off the O2 and within a couple minutes was gasping for air again. The upshot of all that is I'm now on O2 24/7 and use combi-vent from a nebulizer every 6hrs. Oh well, the 15min I spend on the nebulizer just gives me that much more time to watch our silly birds who've decided to come back after all that rain. I FINALLY qualified for an In Home Supportive Services worker. She comes in once a week for about 7 hours. I also got a regular wheel chair that we can fold up and put in the back of her car so it looks like I'll be getting out a bit more. That will be a nice change of pace for me. End of my update. To Bet and cathyr: I read the news of your recent turn of events with much sadness. My hope for you both is that your experience with hospice will be as good as mine has been. Bet, Cathy, the path we've been given to walk was, of course, not one of our choosing. But walk it we will. And, by chance or design, we don't have to walk it alone. I've been on that path a little longer than either of you which in no way makes me any kind of expert on the subject. I've just had a little more time to stumble over the rocks and logs that seem to be strewn all over the place. And maybe, if you wish, I can point out a few of them and save you both a twisted ankle or bruised shin. Feel free, either of you, to PM me for my phone number if you think it might be of help. In the meantime remember to take things one day at a time and, if at all possible, to find a little joy in each day. Prayers for you both. Dean
  11. DeanCarl

    Struggling...

    Summer, Nothing will ever be "the same" again. But there WILL come a time when things are "right" again. When that happens, how that happens, no one can really say. It's different for all of us. But that time DOES come. Don't be concerned whether or not your doing "well". And please don't get wrapped up with how you "should" or "shouldn't" be feeling or acting. You are where you are and that is where you are supposed to be right now. It's been such a short time since your partner has left. There is much to do emotionaly, and much of it is painful. But it will get done. Tomarrow, the next day, a week or month from now things will be different. And, after more time, different yet again. Until you come to a place and time where the REAL connection to your loved one, your memories of you and him together, will bring smiles rather than tears. To over state the obvious, the road you walk today is not an easy one. But many have walked it before you and many right here on this board are willing to walk it again with you. Finally: The sadness can only consume you if you decide to let it. Feel it, embrace it as a symbol of your love for him and then, when it is time, let it go. You are in my prayers. Dean
  12. Doug, Sorry you had to seek us out, but VERY glad you did. I can't add much to what the others have said, other than this: Attitude will be your greatest ally ... or your greatest enemy. And remember, attitude is a choice and you can start working on that right away. My suggestion is to change the word "patient" in your subject to "survivor". So let me offer a hearty "welcome" to our "brand new survivor"! Dean
  13. No need to apologize. None at all. If there is one person dealing with this illness from any angle who says they've not had at least one realy good pity party, well, they are probably being less than truthfull A suggestion for the future: Many years ago I was taught the idea of the "mini-vacation". Could be as little as a few miinutes or as long a a few hours. What it involves is a complete focus on something I realy enjoy and I do NOT allow myself to think about cancer ... at all! As an example: I play poker on the internet. I play everyday. I play at VERY low stakes which reduces any "gotta win" pressure. I play for at about 2 hours each afternoon. For those 2 hours or so I focus so much on the game that I am, at least in my mind, literaly "cancer free". What little pain is left over from my meds goes away, along with a lot of the "foggy head" feeling the vicoden gives me. I seem to forget about the muscle weakness and my shortness of breath. I seem to cough less. In other words ALL the symptoms of my disease, both physical and emotional seem to lessen considerably or go away all toghether. Once the "vacation" is over then it's back to taking care of whatever business needs to be taken care of. 90% or more of the time I come back to that business with a better attitude and more strength than I had before. Now, that's just an example of what works in my situation and based on who I am and what I like to do. I'm sure you can find something that will give you the type of "vacation" you need each day. Dean
  14. It took a couple of days for the appitite to come back and any weight gain (not a whole lot) was in accord with the increased calorie intake. In othere words I had no "sudden" increase in weight. Dean
  15. Whoops.... don't start gathering at death's door just yet. As has been posted, there are a TON of folks right here who have lived, and are living well past any predictions or statistics the experts have put out. Heck, I'm one of them. Given 8 to 15 months from my dx. It's over 17 months now and I'm still chuggin' along. Had a friend awhile back who came down with brain cancer. The docs gave him a few weeks to live before the cancer killed him. Turned out the docs where half right. The brain cancer did kill him .... TEN YEARS LATER! So, for now, take that "life without him" option and toss it. Right now you have a life WITH him. A lot of it might be on the rough side so it seems to me the deal is to concentrate on "the good stuff" and get on about the business of LIVING your life together. Dean
  16. Bill, From someone walking the other side of the road you're on .... keep up the fight! It's tireing, frustratiing and often confusing as to why there should have to be a battle at all. In a perfect world a person would make the choice of treatment or not and the medical proffession would swing into gear to make that persons wishes a reality. This, as we both know, is not the case. In my case it was my scooter that started the battle. Since I chose not to recieve agressive tx for my cancer they (the VA) didn't want to give me a mobility device. Luckily I have a doctor who doesn't take no for an answer and knew where a few skeletons were buried. Each person should have the ability to make his/her own choice and have the care appropriate to that choice. If we keep fighting for that maybe the next person comming down the pike won't have quite so rough a time of it. Dean
  17. I'm sorry you had to seek us out, but VERY glad you found us. I can only echo what the others have said. The experience of having cancer can be so different from person to person. I'm praying your Mom is one of those who has a fairly easy time of it. As far as what you can do: What Shelly said. Especially the part about listening to your Mom. As a person with cancer that is what I want from the people around me. To listen to what I'm saying and not assume or place their own biases on me. The other thing you can do is stay close to the folks here and don't be shy about saying what you need to say when you need to say it. No matter what the next days, weeks or months may bring there is someone here who's "been there, done that" and will know exactly what you are talking about. Prayers for you and your family. Dean
  18. Except that there realy isn't any thing to update. 17 months past my dx and 2 months past the longest estimate the docs gave me and I'm still chuggin' along. Still pretty much home bound due to muscle weakness, however I did get out 2 weekends ago. A friend came over and we loaded my walker into his mini-van and he, Gay and myself went to Sunset cliffs and watched the ocean for about a half an hour. It was a cloudy, cool day (rare for San Diego (except for this year )) and it was realy pretty. Then stopped by In and Out for some burgers on the way home. A very nice day. Lessee, coughing? the same. SOB? The same. Still no sign of matasis. Still on the same type and amount of meds. Which are all GOOD things. So the upshot is that, for reasons nobody can explain (and I don't CARE why ), I'm still here. Nothing else. I still try to log on to the board every day and have even been able to respond a little bit to other messages lately. I think about you all every day and share each day in your joys, your sadness and your fears. I wish I could respond more but will do so as I can. Take care. Dean
  19. All the above are correct. I am on hospice care and have been since shortly after my dx. This is because I chose not to have aggressive treatment. If I were to change my mind I would have to go off of hospice care to recieve chemo or radiation. It's a bit of a shame, in my opinion. I see no reason someone going through chemo/radiation/whatever should not have access to the same types of services I recieve (home nurse visites every week, meds mailed, etc.) if they are needed. Just my opinion. Dean
  20. Bill, First off let me say how sorry I am to hear of your wife's condition. I'm on hospice care and have been for over a year now (I went on hospice the day I decided not to activily treat my cancer). Hospice provides me with any meds that have to do with my physical comfort and well being such as my vicoden, tesslon pearls and robituson DM,(for my cough), laxitives (for the constipation caused by the vicoden) and ativan (anti-anxiety). Some other meds I take such as Flo-max (for protrate) and megace (for appitite) come through my regular health care provider (in my case the VA). A lot will depend on your insurance and your hospice provider. For instance, medical/medicade/medicare patients get their oxygen through my hospice, but, since I'm in the VA system I have to go through them to get it. There are a lot of different hospice organizations out there and each one is a little different in what it will, and will not provide so be sure to ask questions. Dean
  21. 1. Today I saw the sunshine (the docs said I wouldn't be around this long) 2. Today I got to say "I love you" to my wife (and have gotten to do that every day for over 20 years) 3. Today I have a roof over my head, food to eat, and people who care (there was I time I had none of those things) 4. Tonight I will go to sleep in a warm comfortable bed (and not in a doorway somewhere) 5. Today I got to remember that, for some reason I will never fathom, God has allowed me to be a positive influence in the lives of others (when, for so many years, I only brought pain and sorrow to others). Ya know, today was a pretty good day. Dean
  22. Nikkala, Hospice should help a lot with the comfort issues. I know they have with me. Also, if they are anything like my hospice they should have some support (groups, one on one) for YOU so ask them about it. Dean
  23. All your questions are why I suggested hospice care. They can answer them for you and be there through those times. While they've been a big help to me, it's my wife, Gay, that has had the most benefit from them being around. My hospice nurse visits every week and will visit more often as I get closer to taking the next step on my journy. If I need an extra visit for some reason (happend once) she'll be there ASAP. That means I DON'T have to go rushing off to the ER everytime something doesn't seem right. I get my meds delivered right to my door so no trips to the pharmacy and if I need something in the middle of the night (which, again, happened once) the on call nurse went and got it and got it to me within the hour. While all that is good, the biggest thing is that we know we have someone available 24/7 who's "been there, done that" and KNOWS what to do based on what is happening to me and what my wishes are. That relieves a ton of pressure off both myself and Gay. Whatever happens I'm praying for you and your Gram. Dean
  24. Nikkala, There is much I would like to say to you but that will have to wait for another time. For now the one thing I can suggest is to give your Grandma a little time and space (if that is what she wants) to absorb the "gut shot" she just took with that diagnosis. Let her know about the folks on this board who are beating the odds every day (including me ... I was given 8 to 15 months at my dx and, with no treatment, I'm into month 16 and doing pretty well, concidering). If she does decide not to aggresivialy treat her disease you might want to offer up hospice care as an option. Their concern is the comfort of the terminally ill patient and they have been a Godsend to me. I don't know about your Grandma, but for me, if my days are short in number I'd MUCH rather spend them pain free and breathing as easily as I can so that I can enjoy them as much as possible. Dean
  25. Elaine, The best thing I can suggest is to seek out a third person you trust (or can come to trust). And if you can get your family members to think about doing the same it would be even better. Gay has her psychologist and I have the hospice chaplin (not my usual route for things like this but and chaplin that plays poker on the internet can't be all bad! (actually he is VERY good)). I find I can say things to Felix (the chaplin) that I just can't say to Gay even though we are so very, very close. With Felix I can be afraid, or angry or whatever. I mean, that's what he's THERE for, right? That's his role, his job. And MY role is that of client rather than husband, lover and friend. So not only is it ok to NOT be strong when I'm talking to Felix, it's almost EXPECTED! Dean
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