New member intro

[Yolanda]

I couldn't find a topic or board for this so I guess you just pile it on in? Or maybe it's not wanted?
Well I've never been on a forum that didn't appreciate an intro letter so here I am, my name is Yolanda. Before CRC I was already a challenged person having ADHD caused by ASD (autism) but too old to have had it dx'd in my youth. I was always very verbal and clearly intelligent, so my issues were written down to non-compliance and I was bullied by even those who professed to love me. A habit the world didn't give up till I got dx'd with cancer! But seriously, there's things cancer has given me that I needed so badly. The attention everyone denied me simply because I wanted it too much. The respect they never let me earn which translates to common courtesy.
So the disrespect in my life had been reaching a fever pitch as I went from hot young thing to tired old bag and the CRC which sat undiagnosed at least the last ten years, likely fifteen, by my reckoning alone, not medical declaration, had caused me to gain weight. It made no sense gaining weight. I was so poor I ate a very slim diet, focussed on getting enough vitamins and minerals rather than calories. I rode my bike all year, even in winter, to my very physical part time cleaning job. I would haul garbage cans on my back up flights of stairs and vacuum miles of carpet sometimes nightly during play season and 2x weekly all year. In winter I'd pile my bike through storms and ice. You think the mail man's call is dedicated? I never missed a night for my $300 a month, which was taken off my welfare cheque because, after all, wouldn't want to lean on the public dole a penny more than they think I should. Yeah so a man came along and married me and he supports me but till I got cancer, I was his emotional abuse victim. The one he triumphed over whenever his ego needed a tickle. I was always easy to upset and I don't know why but I guess he liked it. I would sometimes go off my food for several days hiding from him and he would just give me a cold shoulder like the victor he was. Well this behaviour was too much for our tiny new dog and the stress of our fights as I tried to fight for my peace and quiet nearly killed him. He went off HIS food and it took expensive vet appointments and 24hr nursing from us to save him. So I had a hook to make this man quit going all aggro over every stupid little hangnail in his day, but he still looked to me as his fight partner whenever he felt feisty. I knew I should leave him but not how, and since it wasn't physical, I didn't qualify for aid or attention from the city outside my door. With my social disability and his antisocial nature, what few friendships I had dwindled to those who kept me around to use me. So the last ten years at least I've been very isolated, very small and alone, feeling like a psychotic between the person these abusive people wanted me to think I was, and the person I'd worked so hard to be and was sure I should appear to be. Yeah, so when I got sick and started to lose the 60lbs overweight that the cancer had been forcing on me, nobody paid attention. I fasted. I knew finally in 2015 that I had cancer but I was too afraid of the medical system, who'd always just shunted me off to the psych system for every complaint, would again just ignore me. I tried once or twice to complain when the bleeding got ugly and the pain got worse, but again got dismissed as worrying too much. When I couldn't crap at all anymore without creating diarrhea via powerful emetics, again I was told I didn't drink enough water, eat enough fiber, I worry too much. So I piled on the turmeric, the bone broth, the ginger and hash pipe (hubby encourages the hash smoking. Maybe because it makes me quiescent, or because I like it, who cares?) I was already on paleo diet for the last 3 years (4 now) and that had given me a remarkable renaissance in spite of the nasty demon baby invading my butt. I think of it as a demon baby that grew in me because it weighed a pound and took my ovaries, uterus, and even cervix with it. The stuff in my female organs was "just a fibroid" whatever the hell that means, but that was a massive amount of flesh taken out!
Well so I started fasting. I was really hoping the fasting would kill me so I wouldn't have to go through the cancer and because I really had nothing to live for and no sense that the world would give a damn either.
Oh damn it's hard to relate this stuff. I've been a lot more cheerful than this lately and I'm giving myself an upset. But okay, I'm going to anyway. I'm good at treating the stress after. I have had more emotional trauma, I think, than most humans alive today. I am only alive because God refuses to let me die, not because I haven't tried!
Well autumn, my birthday season, and christmas season of 2015 were just utter black. I was down to my husband's nasty personality and a passive aggressive mooch for a BFF. I'd cut out everyone else, because I just got tired of being criticized, and the BFF had the value of actually coming over to see me. I couldn't get out anymore. I was too weak and in too much pain. I couldn't even sit up anymore. Everything HB had to do for me was resented by him so I tried to keep up with the dishes, tried to cook some food, tried to sweep the floors and about the only chore I stayed on top of was toilet cleaning. I was so very intimate with that porcelain it had to stay clean! I went from 165lbs to 118lbs and still everyone just acted like I was being especially annoying. Why'd I have to go and get so dramatic? I gave up trying to complain years ago and just apologized, unable to prove I wasn't faking it or exaggerating, not even sure what reality was. By last february, however, I had had enough. I lost my temper crying alone yet again in my bed after yet another multi-day cold shoulder from the monster who worked hard to make me cry just for his own thrill. I told him I was dying and it was good and he clearly didn't care or he'd have noticed. If he actually cared he'd have me in ER without delay. It took longer than that to express, but we sat four lousy hours in ER only to be sent home with a recommendation for laxatives, more water, more fiber. Yeah, seriously. I hadn't crapped more than a grain of rice in six months, was using liquid diet to survive because I couldn't send so much as a grain of rice down without terrible pain. Essentially living on broth, coconut water, eggs and gouda cheese. Things that digest away to fat, absorbed in the small intestine, or just water and minor particulates.
Well we went back to ER three days later and got an Xray that showed a belly so full of crap I could have been having puppies. My father always told me I was "fulla shit" so now, post mortem, he was finally right. He said "I'm always right" so there you are.
Well the xray led to a colonoscopy that couldn't go more than 10 cm in before hitting the blockage, a massive tumour that could double for a soft ball. No wonder I was in so much pain, it was tugging the pelvic floor downward, triggering the spasms in my back and legs that just went to full body charley horses for hours at a time. No pain killers really could touch it except Aleve and then only with massive doses of hash. Hash because my lungs couldn't stand less concentrated forms of the drug. Up until I adopted the paleo diet I'd struggled with chronic cough and mild asthma and exercise induced asthma when I rode in the cold. I could blame my youthful smoking of tobacco, the pipe itself, or the blooms of black mould under my tub where I can't clean without renovating, but who really cares? The paleo at least got me off the asthma meds, eh?
So once the cancer dx came down the line my life really changed. I'd lost all that weight so, even as sick as I was, I actually felt attractive again. People around me were being nice to me. Oh my god, everyone was so nice. The doctors, the nurses, just kind with me and not complaining or shutting me up or turning away. Being courteous. I had an excuse. I had a status. I was a somebody. Now I was an interesting character, not a crazy woman who would probably murder someone. I'm a pacifist and excessively sane all things considered, but humans, well, you're all a little nuts I'm afraid, and a bit stupid around the edges. I don't say that to put you on a lower level. Hell no, you're the better for it, You work together and move mountains. I just wanted to be able to join the team but I'm too smart and forward for a girl and that just can't be allowed. Today's young women are so fortunate to be allowed to be brainy or assertive, even if others think they're pretty!
I've been through capecitabine chemo with radiation that shrank the tumour 80% and then they removed it all and rebuilt me last august with a chunk of my stomach. I started bouncing back by the 2nd week of radiation, though, regaining my youthful drive and vigour, and with it my cheer and charm. I love smiling at people and making them smile and it was delightful to feel this in myself again, and be in an environment where that was appreciated.
I've used the cancer to my advantage, using it as leverage to force my husband to learn how to be respectful and courteous with me. To moderate his behaviour for my comfort, as I often put it. I scold him on the spot every time he gets going. if he leaves me, well that's just fine. I need him, and I'd be screwed without his muscle, but I don't care anymore. He nearly killed me with stress as far as I'm concerned. I think the trigger for cancer came from sweeping up asbestos for ten years in that cleaning job but the stress he put me through and the utter lack of supportive partnership beyond his wallet, are why a: it grew and b: didn't get screened sooner. A supportive partner would have gotten me to the doctor sooner and sat there forcing the doctor to pay attention, right? Certainly wouldn't have spent 5 out of 7 nights being angry with me for not stroking his ego properly and agreeing with every ignorant and bigoted bully phrase that dropped out of his yap.
Well the cancer made my illness real, and now I had the way to say "quit being an ass, it's killing me." He's been much better. He makes some effort to show a little affection, about as much as you give a mother... yeah, there's not much affection in this relationship but I have a sweet dog to snuggle and that's something. He's super cute, trust me, he melts humans on contact. I often used him to distract HB from yet another rant. "hey, HB, check out the dog, he just loves this scratch, eh?"
When I got out of the hospital after surgery (and don't get me started on the food, I brought all my own, even my water) I felt like a being of light and power, with edges sharp enough to cut through all obstacles. I knew if I had to march out into the world alone I would and could. I'd tried again to kill myself earlier during chemo. I looked at my pain killers and realized there were enough there to kill a person (wrong but it looked like it) so I set myself up in the back of our old hoopty van (backup vehicle for smart car and pickup) where a corpse would do the least damage, and swallowed all those pills. I lay there in the cold dark waiting to sleep, hearing drunks go by, scared and alone and cold. Finally the sun began to rise and I went back in ashamed and failed. HB had been getting back to his old ways as I got healthier and more animated, so there you go. I told him, I told my doctors. I didn't think hiding it was the better plan of action however much I'd rather have buried it. But then, hey, this is where i"m at, right? Or was.
I have plans. I had them before the cancer, though not long before. We were going to sell the house and use it to pay of the debts that hold us down. Then since we'd have no way to buy another house, seeing as this is as crappy a house as you can sell in a cheap real estate city, we could build a tiny house and move it around. Ok, but we can't afford the trailer for the house, and really, I was so sick. Years of research and I wound up settling on a bus. I could buy a school bus. I realized I could buy this bus and move into it and drive off away from Himself on whim. I was saving money by now, hiding it away so I could escape somehow, and this was growing well, so buying an old school bus was plausible and I could just move my furniture into it, nail, screw or tie the stuff down, and take off with my parrot, my rabbit, my dog, and my finches, then force him to move and sell off the house or just turn my back on the whole mess, hide from the debts (all in my name) or whatever. Then cancer. Yeah, too sick to do the work. Sick is going on for years, not months.
I not only had the CRC, but there's these shadows on my lungs. I thought it was my breast when they were paying so much attention on the ultra sound, there's a tiny lump in there. apparently that's just "fibroid" (a what? what ARE they if not non-malignant tumours?) and the scare is these two teeny little dots on my lungs.
After surgery my surgeon had me scanned and this showed three teeny little dots, not two. So we're worried I have lung cancer and after this round of FOLFOX they'll scan again and take it from there. So while I'm trying for a bus time of next summer, it could be two or three years in this tired little cottage in the bad part of town in a land where winter owns you. I can't even get out sometimes in winter for week or so because the smart car hates ice, the van hates cold, and I'm too weak to ride my bike and nowhere to go if i did. I'm so grateful for the internet but if I have to spend another five years rotting in Saskatchewan I am sure I'll try harder for that suicide! They call it quality of life. But a nice cage with my needs met just isn't enough for me anymore than it is for my parrot, you know?
I had my first birthday party in this century. I think the last one was the late 80s when I had a popular roommate who got her friends to come. I'd tried over the years but people would just blow it off, even after promising to come. I was always too broke to hire a bar or restaurant to get people to come toast my natal anniversary and they otherwise had no interest. Well last friday three people came over and with me and my hb we ate forbidden cake (black forest cake) and did the candle thing with people singing. They actually sang for me!! It's unreal, really. They all brought me presents too. Nobody has done THAT since my puberty. it's harder to describe my life than live with the memories really. It is normal inside my head but when I put it down, it looks so damn pathetic. Please, no tones of sympathy, I need cheerful BS these days. it'll just set off a fresh round of weeping and this one's going through enough kleenex. Just telling you who I am!
Back to my lung. They put the port in my arm thursday (my most expensive birthday present either if you don't count the stuff I buy for myself. (I like tech gadgets) During the procedure the xrays were pointed right at the spot zone and I know I saw four spots. Definitely not something on my clothes, nor connected with any familiar organs, and definitely two matched, although a bit grown, the spots they showed me from the previous scans. So lung METS, right? They aren't saying anything, probably just trying to keep the shocks far apart? Or there's not enough data to say anything definite enough. But I'm terrified of having my chest cracked open. Even though yeah, I can heal from a peritoneal rebuild in just two months, having all my ribs broken is definitely going to set me back another year or two in getting out of here! Meanwhile some of the unattended business my careless spouse has left dangling gets dangerously closer. We need to pay those bills before the creditors lose patience, you know? We can't do more than trickle pay until we sell the house and use that to pay for it, then if we have to pay rent or mortgage to live somewhere, well we're in the same boat as servicing the debt without a mortgage/rent payment. How much longer can my 61yr old spouse put out that kind of effort? His is a trade skill job, he works harder than most young men, and his strength can't last forever. He has lousy self care and tolerates no caretaking efforts from me. He's too terrified I'll treat him the way he treats everyone else I guess, if I get an "upper hand." All these years I've stuck to my promise not to be verbally abusive, insulting, petty or vengeful. I've been painfully honest at worst and only in reference to our relationship and his unacceptable behaviour. It's given me leverage, anyway. "No, you're the one who does that, I have never called you a bad name" or etc.
You know, nobody gets what they deserve. We get what we grasp, we keep what we care for. Years ago God told me I'm stuck in for 108 years sentence, no possibility of parole. I still sometimes hope She'll change Her mind about that.

[fumaros]

Am speechless. But here's a funny thing. I think you would make a great writer as I could feel every bit of emotion you wrote down.

[DarknessEmbraced]

Welcome to the board. There's a lot of support here!*hugs* I hope your chemo goes well and the lung spots aren't cancer. Thank you for sharing your story!

[lpas]

Welcome, Yolanda and thanks so much for sharing your story. You've been through a lot! It must have been horrible feeling sick for so long when no one was willing to listen or fully investigate your concerns. Kudos to you for standing up for yourself and finally getting it addressed.

Regarding the lung spots, have you talked to your doctors about the possibility of a needle biopsy to confirm their status? Perhaps they're still too small. There are pros and cons (seeding is always a concern) but it might be worth a conversation with your medical team. I don't have personal experience with lung mets but I know there are many here who've had good success with radio-frequency ablation (RFA). Removal doesn't have to mean cracking your ribs! What is your current CEA and what was it at diagnosis? Also, how many lymph nodes were cancerous at diagnosis? Was your tumor microsatellite stable (MSS) or unstable (MSI)? If you're not sure, check your pathology report. All this is information that would be good to add to your signature so the folks here can provide you with better advice.

[Lee]

Just want to say Hi and Welcome,

Glad you found us. Wow, I am so sorry for all that you have been through. I hope once you get beyond this cancer journey, that things turn around for you in a positive way.

Maybe I missed it, butt what chemo are you going on?

You will find a lot of support and helpful info here.

Lee

[Willow.NZ]

[Yolanda]

Thanks for the replies! I know it was a really big chew to read it all!
To the one says I'd be a good writer, thankyou. I would, but like singing or acting, it's a crap shoot actually making a living at it. It's easier to play the lottery.
regarding the technical details of my cancer, it's all entirely too overwhelming and all the initials and numbers just go in one side and out the other and reading the path report makes me cry. I'm not taking advice outside of the clinic anyway. I really don't have recourse to any other team than our local cancer center, they're a high quality teaching hospital, and I trust them. I think they'll pick the least invasive yet most effective treatments possible. The fact I'm even alive today tells me they know their stuff. I was pretty badly advanced. I just have to live with the worry and the waiting. Currently I've started FOLFOX chemo, although the first course went awry when I chopped the bottle off by accident after a bath. I was cutting off the plastic I'd taped on my arm to keep the port dry and I swear that tube moved of it's own accord into the jaws of the scissors! So I was back at the clinic a day early having it flushed and turned off and asked at pharmacy, hey, do I need the support pills they gave me? he said I should just take them as prescribed so I went home and kept following the complicated chart. But then my mouth started pursing of it's own accord. Like just going into duck lips when I relaxed it. I had seen that side effect listed and sure enough, it was "quit immediately and contact the clinic." So I quit all of them and said to hell with more contact with the clinic, I'll just explain when I go back in 2 wks. I really haven't got this much social function in me anyway. My understanding is the meds are to stop heartburn, nausea, and the side effects of the pills that stop heart burn and nausea. Since I'm not having those things right now and now I'm not even on any chemo till the next round, heck with it.
Then last night insomnia ruled and I've spent the day so wiped out I mostly just slept it off. I do dislike that logey feeling I get when I'm like this. Can't think past the fog, lassitude weighing down my limbs, and now, with my pelvic floor replaced by stomach muscles, incontinence!!! Gee whiz. I mean, I've suffered leaks for awhile now as the tumour had put a lot of pressure on my bladder, but this is ridiculous. I'm supposed to call some classes on a list I was given of free yoga and pilates for cancer patients but I haven't had the mental process to face the phone call. When I get tired or stressed I simply can't remember how to talk to people. Writing is easy, but voice and face-to-face, that's a whole other ball of wax. they talk back and you have to slip back and forth between listening and responding, process their speech, figure out if it's hiding messages, what sort of diction to use back, answer the questions but not too much detail (I'm hopeless at that) and all manner of mine traps.
So well, I'm sorry I'm not going to follow through with deets about lymph nodes. I think though he said the cancer was into the tubes towards the nodes but not actually in the nodes yet?

[SEWHAPPY]

Hello! I am a new member too. Your post caught my eye, as my son has Asperger's Syndrome. He was lucky enough to be diagnosed early, which helped him to develop some coping strategies. But we believe very strongly that Asperger's is not anything that needs to be "cured". Aspies have some incredible strengths!

I would suggest that you take a look at the forum wrongplanet.net - it is by and for folks on the spectrum. You might find it a good source of companionship and information from people whose strengths and weaknesses are more like yours. My favorite Aspie saying" "If the world was run by neuro-typicals, then we would still be in caves chatting"!!!!

Best of luck on your cancer treatment.