Choose Carefully

Am I Busy Living or Busy Dying. Trying Best To Do The First.
W,W,W,W,H,W of who I am. Well (!), (?), (*%#&!) You pick.
2/14/09

Fill Er Up

They say you know when you are ready, so I am convincing myself, "Not yet!" The question I want to avoid is how long will I be able to sustain the decline that is happening. This week I had to have two pints replaced which I knew was in dire need. How long can something go from occasional to every time without it being wore completely out. I am referring to blood loss, BTW.

I am still ticked over the last doc incident and now I am ticked still over the same question as to why they will hear or listen to even part of anything you have to say. I asked about hyperbaric treatments to hopefully, at least, heal that lesion and stop the flow to a minimum. All I am asking is for an option. What is left on my voice mail? Zometa. Been there, done that with the only outcome is loss of tooth enamel follow with tooth/teeth. Zometa wasn't even mentioned at my onco appt and they already have a treatment scheduled. I forgot to mention that before the loss started there was terrific pain in my jaw and this onco will not prescribe the meds that hospice had me upped on. It has been my doing lowering my dose without one single doc addressing the issue of my options or going through withdraw on my own that could lead to an earlier demise. This onco would not even agree (valid but still) to simple Naprox because my platelets were low. WTF? It has never been an issue before. The low end is 150.000. Mine are currently 100, 000. Any other time, I would hear, "Not bad, Don't worry,..." I just don't get them. I believe they do not like me because none can look me in the face any more and be honest and say four of the hardest words--I do not know.

Too many want to start playing a game there are no rules too, but want to make them up as they go along.

Another side has occured along with loss of mental state and that would be agoraphobia (sp) and loss of caring for outside contact. ZI don't want to answer phone, door, but if I don't I am again non-compliant. I can't wait along with all the others that suffer from society, illness, stress-induced insomnia as a legitimate disorder and sue under ADA to where all these wonderful medical professions will have to make reasonable accomodations for ones like me and many others that just cringe at that thought of going out with the sun glaring, or just plain wore out from being sick period. I find it more tiring to have to accomodate assistance than have any at all. That my friends is pretty bad. I know I can't be alone with this thought. I feel it is when the fight turns to flight.

I want to mention again the emotional pain and how hard it is for your loved ones to feel tied to you less they are not worthy. The lingering.........it's all crap. Thank God, I have Him, but loved ones you don't always know the toll. Again, emotional pain. It leaves the question should one just let it all go with no intervention one way or another or continue to fight knowing they are only prolonging the inevitable extending the emotional pain?

Don't get words twisted, please. I still do not want others to say at least she is no longer... For me it would be a release to those closest. They are in pain as well.

 

 

 

Comments (3)

2/4/09

Forgot, goes with other blog

and there is always TMI, but I did not but meant to mention on what good are records when docs never read them or place to much faith in what is on paper.

After I had that last PET that did not have a false reading and showed mets were everwhere, hospice was doing what ever possible to justify discharging me, but there was an exception of a health pro finally seeing my dilema. She said, "It was hard because I look good on paper." All these years is what I have been trying to tell the pros that my labs scans and tests will not always show what's up, Even now, with the exception of low CBCs, I look healthy and they are not too concerned because they have not dropped like most peoples.

I am to the point of saying nothing just saying you figure it out.

From last entry.

>Oh before that, I have to mention that I have mentioned this new pain (the most problamatic to date that according to the wonderful PET does not show mets there), and not one doc has done squat to find out.<

My visit with the new-no-drugs-for-you-onco, she kindly mentioned that the wonderful $$$$ PET said no mets on the second cancer with her air of certainty. Meanwhile, the doc that stranded me was so set on the only course for me now was hospice especially now that METS has caused that colon to blow and fistula to form.

????????????????????????????????????????????????????????????????????????????????...

Should I just write a bunch of crap down, put it in hat and let them draw? Sounds like it would be a better course of action since regardless of what is wrong they are going to make their very own conclusions. After all they are the pros. All they see now is a low socio hence stupid patient. If they read all my records from days gone by when I had a job with good insurance, they would have seen the rave reviews from my past docs about how knowledgeable and pleasant I was. They would have also taken the time to know better enough to know that had it been my choosing, I could have very well chose their profession with my GPA. It would be even more shocking to them to know that GPA began with and eighth grade education. No I was not some unbelievably gifted child just a misguided one that wanted to grow up too fast----and did.

 
2/4/09

Redemption At A Cost

Other than my son and departed mom very few have been privvy to my situation or have been hiding from it i.e. family. Not anymore. My father for the most part has been hiding from the truth and picked what he would rather hear or know than what is real. As much as I hated it for him, it could no ;onger be held back when the doc came in to give me my most recent news. (stepmom hearing it--different story, now she can no longer compare me or choose to think the worst of me: lying, lazy, trouble-maker). The doc redeemed me stating how much of conundrum my health and the fact I am still here truly is. I stopped him before he gave me a time limit, but he had said enough that when he left my father lost it. He can no longer hide that it is most likely he will be burying another child before the year, summer, spring is out. Remember i stoppped doc before he gave a time limit because I have already gone past miracle and I am holding onto more. For me, it is a for sure what you have been wanting to do, you better get busy.

I have said there is the physical pain part, but the emotional is so much worse looking at your loved ones especially your dear son and not knowing if they are going to be okay and you have to hang onto faith with every fiber of your being that he will be.

I have not arrived hear writing now because it is just another day but it is one of the things I need done. Family can be excused for feelings and actions towards my problems, but the health industry has done nothing but criminal offenses by not listening to me. Within the last three months new oncologists is flat refusing narcotics for pain meanwhile prescribing me $$$$$$ Aromisin trying to delude myself that at this point in the game it could give me a few more years while the sides make me feel worse than what I do now. Next comes the bleeding from the southern regions:rectum and bladder (blamed from radiation) The bleeding was mainly coming from the bladder and through the years (yes years now) I know what it okay for me and when it is more than it should be. What happens? The same shit that happened when the bladder bleeds first started. Diagnose me (without sterile sample--cathed) with a UTI, given script of high power, hard on system anti-biotics and send me home only to end up tied to a blood bag two days later. Currently it is almost out of hand. If I did not believe that God himself will let me know and prepare me (still scared and do not feel just yet), I could not possibly see how much and how long so much blood can leave my system without heart stopping from nothing left to pump. As is BP drops 80s/50s and even last week 70s/40s, but all the health pros brush it off as normal for me. "Scuse the hell out of me!" Those readings should not be muttered as normal for anyone, yet here I am. Anyway, blood is pouring, I go to ER, get about the dippiest, get IU diagnosis along with anti-biotics and sent home. I never filled them. Why should I? But telling them that one more non-compliant shows up on record. I don't give a damn anymore because I have ample proof that had I always followed docs instructions I wouldn't be the miracle I am now. Advance to three days later. Oh before that, I have to mention that I have mentioned this new pain (the most problamatic to date that according to the wonderful PET does not show mets there), and not one doc has done squat to find out. The following will play a part later but it also needs mentioning, but the onco told me the wonderful PET did not show ANY mets or recurrence from the rectal cancer. Now three days after that ER visit, (gets ucky but none of cancer is picteresque and reason for blog was not holding back) I go to restroom and while cleaning self I discover a product where there should only be liquid. Yesiree, my colon had ruptured into my vagina.

This is where my dad gets to sit at the side of my bed lstening to the doc telling him wow but sorry surgery to repair is not even an option. I have been turned down to have my gallbladder removed because I am so medically fragile I would most likely not survive two hours of anesthia msuch less the 8+ to repair holes and create new ones. Nope docs dumbassedness (don't care if its a word or not, very little I do care about except the things that really matter) doesn't stop. When you are indigent it is much different, I dont care what anyone says. I had my follow-up appointment next. Although I really admired, still do, the attending doc in the hospital, he had to turn me over to a resident along with the rez's instructor. What happens. I liked the resident. He fully understood the pain management and mentioned the word "humane" while his attending came right out and asked if I had violated the drug contracts a patient has to sign if thay are to receive class three narcotics. The only reason I still have morphine is hospice (that horse isn't dead yet over their discharging me for non compliance refusal to let their nurses see me--not the case--I upset one of their nurses wa wa because I asked for another. I told them i could be professional about it all but apparently they coudn't. Excuse the digressing as always, but shouldn't hospice nurses have soft heart yet thick skin). Many of the my post are the way they are because they had me on 300mg a day while I was consistently losing weight while they kept me stressed to the point I couldn't sleep. Literally walking dead. I decreased it on my own, have slept through thus missed doses, plus over holidays they were allowed to renew scripts ten days out, so currently running on six weeks left after that--I don't know.

*Getting back to follow up. It was Friday and little to my knowledge they had a party planned that I wasn't invited to but they forgot to let the dog out before hand. Yes, I sat there and thought it was taking awhile to get back but the optimist I am was thinking they were doing their best to get everything taken care of since my condition is as it is. My experienced dumbass finally kicked in and got to thinking I have waited before, but not this long, plus I had to pee. I opened the door first, hoping to catch someone in the halls. Nope--silence except fax machine (thought could be for my sake). I wheeled into the hall and saw nobody. I went to the patient/exam room door and checked if it would lock behind me and it would. So, my thinking is if I go and they come back and I am not there they will just have another nasty remark for my records and hung my purse on the door to hold it ajar. Then I smelled food and heard conversation along with laughter. The restrooms happened to be by the glass doors that led to th elevators taking one to the bottom foyer. I looked doen and saw all these people including the doc that closed the door behind him as he left me in the room. I went back towards my room and used the nurses phone that is usually in the hall where the exam rooms are and diealed the last four digits of the phone number to the facility and got the answering service. She was somewhat shocked and said she would see about paging. I waited a few more minutes and withing a few I heard heels coming at a fast rate up stairs that patients usually are not privvy too. We know how we see docs than they leave but never see them walk through a waiting room. Those stairs or elevators. Anyway it is a man and woman. I didn't want to hear a word out of their mouth knowing it would be excuses or interrogation. I also didn't want to say anything that could be taken out of context. Lord knows that is what my docs and nurses have done to cover their ass in the past. I kicked my scooter into jackrabbit mode which was a bad move on my part. Yes, I was able to stay ahead but at the cost of running into walls because it is touchy in that mode. The only words exchanged at this pont was when I looked down into foyer, I pointed out the guilty party and went to elevator and looked up to see him looking at the lady. He had a smirk on his face. I did open my mouth at that point and said, "what do you think this is funny?" He replied that in fact he was highly upset by the whole matter. My last words in the building is when scooted up to the doc who closed the door and before he could sip from his drink was, "you left me." Him, "What?"  Me, "you left me in the room." Him, "No I didn't. That was Dr,---

Son had been sitting in car with computer. After eight years of this, I try to make my visits as least intrusive to others as possible especially him. He was 14 when I was dx with hep c, 20 with 1st cancer, and 23 with second. The kid deserves a break, so I dare any dimwit to try and criticize why he waited. It is because I have asked it of him, but he knew something was going down at that point because he was almost to the front door when he saw me coming. He was very concerned and I told him a brief synopsis trying to get him away from a potatial volatile situation (him punching docs, knowcking over their "snacks"). He kept saying he was going to get an apology is all. Yeah right. After all this other crap that is partially written, he has been ther and is the one person who can back up every fuck up. He is tired too, and has already spent his young adulthood doing what no one should have to do.

Ending on a positive note. My son! The right young woman will be extremely fortunate to have him as a life partner. I do see a positive up-swing with young lovers finding out it takes work--hard work for a relationship to last and that you cannot give up on those you love. My son is proof positive. There are times he has crossed boudaries, but haven't we all. He is still with me.

 
About the Author
Doodle (Lego_My_Ego)

My doctors and body tell me that I am at the end of life. My spirit tells me each moment I am at the beginning. I hate hearing you are so young when there are literally millions younger than I dealing with problems I can only imagine. I cannot discount those older either. I am blessed and may God bless them all.

Some of my writings are best to leave at rest, but I can't, won't,...for whatever reasons, so they are here. Hopefully I can reach out and touch other's emotions and not leave any sadness in the process, but knowing that I lived and learned.

Calendar
«December 2017»
SMTWTFS
262728293012
3456789
10111213141516
17181920212223
24252627282930
31123456
Blog Entries
Archive>

©2017 Delphi Forums LLC All Rights Reserved