It's really unfortunate news... if you've got advice... please share. (Page 2/2) 82-T/A [At Work] MAY 08, 10:40 AM quote Originally posted by KennyC: This seemed as good a way as any... <sigh> Some of you may remember me vaguely from when I was a more active poster, before I become mostly a reader here on the forum. Some of you I met when my wife and I stumbled around Carlisle, but without knowing who I was on the forum. We've been struggling of late, and I mean sure, it was hard when my back injuries happened, but, April 24th we suddenly lost my step dad out of nowhere, and, the real doozy was 3 days later when, as a couple day early birthday present, they told me I've got leukemia. I'm fieroless this year after we previously sold my last to pay some medical bills. But these little cars and the community here, well, all still hold a special place for me. As I've struggled with the surreal concept of actually *being* a cancer patient, something I can't really accept even as chemo related side effects drag me down and keep me awake tonight... <sigh>...I dunno, i'm sorry for this turning to s stream of consciousness rambling. Where I was... reluctantly? Nervously? Thinking of going with this thread was thjs... I wondered if anyone here has survived the illness themselves. If anyone was willing to share things that worked, helped cope, helped keep the strength to survive the treatments. I know it's a lot to ask. But this is the first place I've tried admitting publicly what's going on with us. Our guess is it's maybe related to exposure to Round-Up back pre2007 when I quit using the product upon first learning it was a carcinogen and the risks the company was hiding. I hoped I'd be OK having stopped. I wasn't so lucky. So now I'm trying to grapple with this concept. With what the future may, or may not, be. With the goals and wants that are unrealized, fieros sold, and, ones I always dreamed of oneday having. With the wedding we've never had or been able to get to a position financially to pay the expenses to give her what she deserved. Basically with everything. So. <sigh>. If anyone has anything they want to share... please do. I'm also trying to decide how much of my path facing this I should, or could, manage to keep sharing here.... if it would help anyone else is our community that later finds themselves where I am. Then at least some positive, some good could spring from this happening Hi Kenny, I don't think we've ever gotten the chance to really know each other. But I hear that for many of us, scares like this are what make us really appreciate life. You'll fight, and will beat this... which is not to trivialize your fight, but to let you know that it's your new goal. Don't focus on what you plan to do when you get better, spend the time you have now to make the most of it with family and the things that really matter. Get your thoughts down, if there's anything that you've wanted to do that doesn't take a lot of physical strength, do it now. When you overcome this, you will have a renewed sense of strength and ambition. I'll be praying for you, and also... I x2 what Cliff has said above. KennyC MAY 08, 11:53 PM I've actually read all your messages multiple times over the past few days. Some more than others based on post date. But I've been trying to figure out how to express a thank you for the time you spent replying, sending wishes, thoughts, stories, suggestions. Nothing seems to really get across what I'd hope to say, or, the variety of thoughts that swirl around. So, can I try this: Thank You. Cliff (Pennocck) - I didn't expect to catch your eye with this post. Thank you for all you've done for us through this site, through the years. It was always invaluable to me as a resource. Back in the day I learned of the old kick hill events here. How to do a lot of repairs. Help getting the key codes so a dealer could cut me new obsolete keys I found online after a body shop list mine. So many things I doubt I could have connected to elsewhere, even more so 15 or so odd years ago, absent the hard work and resources put into this site. So let me thank you for that. And more. You speak of load to bear.... It's been a bad few years. It is falling on me to also become executor for my stepdad's estate, find and retain some medical malpractice representation related to his passing, and, remain the primary caregiver for mom who is still with us having advanced pulmonary fibrosis. And in case I didn't mention it, it's with my neck, back, and spinal injuries from when a series of accidents happened with a driver running a light at an intersection <crash>, an undocumented who was on the run rear ended us at a stop <crash>, a guy with a leg brace (right leg) crossing head-on into us <crash>, and a firebird falling off a flatbed the operator failed to secure correctly, rolling down a hill, and hitting a parked suv <crash>... and that's since the end of 2016 through Aug 2018. We moved away from metro Atlanta afterwards. I try, to my best, to endure. I want to push forward until I'm used up. It's getting harder to cope, but I'm ever weaker. And it's ever harder. Cliffw- These days I don't get to contribute what I used to. Back in the day, I dropped out of college to work and support my I'll parents, keep the mortgage paid. Worked for K*B Toys, some local new england companies called Ocean state job lot, and an urban mall clothing company. Foot in the door as a seasonal associate, worked up to assist manager. Became an acting manager. Joined an operations dept to train new managers and employees and management candidates, open new stores. Met many people, great people, from all different walks of like along the way. Saw tragedies with newborns of employees passing, and even employees themselves passing, people in unsafe living situations, all manner of things along the way. I can remember at least 8 cars I bought cheap with some left over money and got running well... you know, in the days where a running, but broken (bad Exhaust, brakes, engine needing tuneup, carb bad, inspection failed, etc) could be bought for $200, $400. Used what skills I had to fix them and gave them away, free, to some of the single moms and younger employees without great support networks so they could keep their jobs, get to appointments. I like to think their outlooks in life improved for the efforts. These days, especially in the pandemic i donated raised gardens to the elderly folks at an apartment complex during the pandemic or helped with their shopping. I also try to plant suburban garden at our house bigger than we need, and, donate excess fresh produce to the local churches to distribute. I don't know how that will work this year. It makes me sad. Prior to starting chemo, when I was weaker, but, more functional, less quick to tire, well, this year I managed 96 tomato plants from slicing, to Roma, grape and cherry of different colors and styles. Also got 56 peppers, sweet green, yellow, red, and banana. But then this hit. Beans, not in. Nor did squash or cucumber. So those may be lost, I'm still going to push, to try. Not sure now it will work, or, maybe my girl will help harvest too and get them out. We will see. Or maybe, just maybe, there will be good days when I adjust. Hope, but dubious to expect. So, in a way, others will suffer as I cannot do it all. Digital Alchemist - I bought a small notebook calendar. It's only 6x8 or so, but every day has a page, and a line per hour. I wanted to use it to record when something didn't feel right. How it went good, or bad. I don't have a large social network. It felt impersonal, and, with many I lost touch. I feel guilty/bad at the thought of thrusting my griefs, my hardships, into those that remain from when I finally made it back to college as a 25 year old. When I think of how those years went.... my apartment was an illegal garage conversion where I got 1/2 of a single car garage, where the snow blew in through the walls, where the bathroom had a shower that dumped straight into a crawlspace underneath... but, as an unsupported guy working 2-3 jobs at a time to put through school, it was dirt cheap, $250[/mo. But again... although I missed out on a lot of college life, I met some great people. Got onto the faculty senate as the undergrad rep. Participated in the re-accreditation for the University. Planned graduation speaker invites with administration. Got to be friends with a small, but great group of people, and did a whole lot more in my 3 year push for a degree. Ironic.... in my 3rd year they did a relay for life. Back then I could walk forever from hiking and background.. . They started the event, I walked. I didn't stop. I walked through the night. Didnt stop. A small group of 2 or 3 joined me in the middle of the night realizing I hadn't, and wasn't, stopping. I didn't go fast. I just walked. All the way through to sunrise and beyond. Didnt have much for sponsors, no memory of a final lap count. I walked the whole event as a symbolic thing. The irony now, when I can't. <sigh>. . . Maybe someday, maybe things will improve again. But as for reaching out to themselves who scattered, and who are nowhere near me now? Not sure now to do it, or, I it's even fair. But, I replaced the failed 3 semesters I worked 5 days 150 miles from campus full time, trying not to give up on school when my folks were sick, then stacking all classes in the other 2 days.... had a GPA that would make animal house proud - 3 semesters, below 0.50... and graduated with honors, finished what I started. And did a whole lot more along the way as the student body treasurer and behind the scenes fixer ofnthe student group paperwork to get them recognized and funded, but, their papers dictated they'd get voted down the kicked off the rolls? Totally worth it. <sigh>... Back when I could do more things. I digress. Sorry. That's enough on that. But thank you for the advice bit, the diet suggestions, all the rest. We were given a 'cancer cookbook' and my other half surprised me with a modified creation from it today. It was good. Jake Dragon - I'm not so sure how, or what, to do and my thoughts, my own semi-privacy nature like your friend.... that is also me, except I'm the one life took and moved around a bit. All through new england. Into post Katrina new Orleans where I volunteered and helped out. Finally to Georgia, where I pushed myself through grad school and met my other half in 2009... who, maybe, someday, I can find a way to give her the wedding we discussed and tried to work towards a couple times, but, life, costs, problems stopped. At the time she said she never wanted to leave, and now that its... complicated, and, mom and my departed stepdad had moved to us before becoming much more ill... now she would've been OK to leave, but, that's not happening anytime soon... if at all. But, the feelings you describe havingnfor your friend... I don't know if it makes sense, but, I dont feel I'm worth putting those in my past through that over what is going on.... or if they ever thought of me as often as I of them... they may be disconnected from those pasts we had together anyways. Otakudude - thank you for your kind offer.... sort of on the train of thought above, I'd hate to make someone who has gotten through and out of all.... this. To send them back into reliving and rethinking those feelings and going theiugh it id hate to do that to someone. And after today's ridiculous interaction and what the insurance is trying to do to me.... I don't even know if, or how, I'll be able to stay in this treatment. A few weeks into the chemo, my counts have gone down. Not a huge amount. Not enough to hit the benchmarks they set. But enough to show change. Except now the insurance wants me to switch to one of two very old drugs the cancer center said they stopped prescribing a lon long time ago. As in something like 8 years at least. And with out family history, immediate family history.... between the greatly reduced efficacy and the dangerous side effects I'm even more susceptible to... it's not an exaggeration to say it's doubtful id survive, and, would suffer through some mix of bas side effects including regular micro seizures and heart attack/failure/embolism issues that had higher incidence rates and would all but happen given our history. But, being insured, the drug company assistance programs don't kick in unless the insurance allows the drug under the plan, even if no contribution towards cost. But insurance, they're rejecting completely. Which means no assistance beyond the free starter kit weeks, and, the free first month I'm 1/4 way through. So, it doesn't look good, when most ofnthe society, the grant groups, the 501c3's involved with the disease say fully subscribed or closed towards their programs. I discussed with mom. With Amy, my better half. If we don't pull it together, quality of life, it's safer, it's an easier less painful path, just to keep looking for an opening and take.nothing. and if I make it for a while, that's awesome. And if I don't, well, it's mostly just fading in tiredness, in strength. Much better than going through heart attacks, seizures, having their 85% intestinal distress causing dehydration and organ issues, or erosion of stomach and throat linings, all that which is why things USED to be so much less survivable? No thank you to that path of pain. So I'm keeping looking. We will meet with the cancer center coordinator to see if she can help finds things we cant on Thursday. And hope for good news, or something promising. Maybe it will work out. But our income is down to a deep south public school teacher and zero from me. No way were paying the costs of major lab work every 2 weeks, ekgs once a month, and obnoxiously expensive chemo drugs off just that.... so, cross your fingers for us. I blasted the insurance today with questions of why? How? Show me what you referenced in the letters? Got nowhere, yet, aside from 'they'll look into it further." Maybe we can get a break, but, between the stress of the condition... life... now all this? For someone who is told to focus on stress reduction, this wasn't a good day. Raydar- thank you for keeping us in your thoughts and prayers. Through all this... I'm young. I contracted a disease that in the majority seems to impact people 20 or 30 years older than me. Maybe that's why the insurance looks at me as an expendable person. Who knows. But I'm glad to head of your friend who made it, and is still out there stirring things up on a motorcycle at 70. It would be nice to make it that far myself. 82 T/A - thank you for your sentiments, and your support. You never know if we may have passed somewhere or even met in person if you went to a Carlisle event. Amy and I went, drank many a fruit smoothie from the shed, looked and took pics at fieros, even talked to people where I didn't really use my screen name to introduce ourselves. Your sentiments are appreciated. We always joked my life, things I've done, people I've met would make an interesting and almost unbelievable story due to the variations and depth of experiences, even though it hasn't been all that long, and, how badly much of it started from the early abusive struggles I didn't understand were abnormal at the time - I'll tell you, even now it brings raw emotions remembering when I understood and came to terms with how wrong those 2 decades were. Its also why, I have reluctance to pull survivors into this all.... I'd feel bad bringing a feeling like that back to them. It never goes away, at least, my past. Its faded, weakened, but even now, that casual mention, brings a weakened sense of the emotions I struggled with. While I'm not through this... I feel those emotions would be much the same, on the ither side of all thjs... you feel what you did then, but a reduced form. And is that fair? I don't know. Its hard to think of a widespread imposition of that into a group, just for the one. I'm not sure where things are headed. Or how and how well to make it along the way. There are things the thought of being able to do, experience, fulfill or finish give me positive thoughts. Maybe, if it's not too boring, too negative, too depressing along the way I can continue sharing some bits and pieces, as they're relevant, or as they're new. If nothingness, maybe pushing things out there can help someone else who is quietly coping on their own, as I was, and, to a limited extent, remain. Sorry for typos. It took my a bit to work up to making this as I organized my thoughts, read your comments. Wanted to reciprocate. It just took... a while cliffw MAY 09, 09:05 AM quote Originally posted by KennyC: Cliffw- These days I don't get to contribute what I used to. Kenny. That is normal in life. I can say the same about me. I have found out I still have a lot to give. Most appreciated very much. Think of the football star who either was injured or retired. They don't contribute what they used to. The same with actors, movie stars, musical artists. Perhaps you are adjusting and am unsure of if you are doing it right. Many feel that way about themselves. People sometimes lose sight of the blessings in life. The fun. The comedy. I have learned that with me, it is always constant adjustment.