Alachua County EMWIN Project

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Friday, December 17, 2010

Christmas and Cancer

I recently posted this on my Facebook page about what happened to my mother when she had cancer...

My friend Michael Heeder posted this on his page...

"Most people have 1000 wishes for Christmas; a cancer patient only has one, to get better. I know 97% of you won't repost this to your status, but my friends will be the 3% that do. In honor of someone who has died, or is still fighting, or survived cancer (like my Dad), copy this as your status ♥"

I repost it here to honor those who have fought cancer, but reminded me of what happened to my mother, who died of cancer herself in 2007; and I thought I'd add the following story about her...

My Mom had cancer and she knew she was dying and that there would be no second chance. I'd promised her long earlier that I would do whatever I could to abide by her wishes, whatever they turned out to be, and that I would stand by her...even when her doctor tried to drug her up, going against both of our wishes, and would repeatedly make her sign a DNR (Do Not Rescuscitate) form while under the influence. While my mother knew she was dying, she - like so many people who know that they're dying and that they don't have much time left - wanted to hold on to every last breath of life while she could. ...And I tried to give that to her - while doctors tried to take it away, actually making her feel GUILTY for holding on.

I remember Mom going to an appointment with her doctor one day and her doctor had yet AGAIN put that DNR in there in her chart. Mom asked her to remove it and the doctor had a temper tantrum - in front of the BOTH of us! She slammed her pen down on the clipboard and BERATED my mother in complete disregard of my presence in the room. "So you want to DRAAAAG this out! Is THAT it, Mrs. Sherman?!!! You want to DRAG this out and make everybody else SUFFER. Is THAT it?!" It took everything that I HAD to keep myself from PUNCHING that doctor, right there in the room. (The doctor was of Asian origin and I guess they have a completely different way of looking at life over in that culture.)

NO one should have to go through anything like that. Death is horrific and cruel enough. Doctors with insensitive mindsets such as what was seen with my Mom's doctor should have their licenses taken away and be banned from ever serving people again. Really, they should be put away. As the doctor once told me..."Your Power of Attorney is only good as long as she's not able to make decisions on her own." But that didn't include times when they'd drug her up on purpose so that her mind was not able to handle anything. They'd ask her to sign those forms when she was in that 'inbetween' period - between consciousness and passed out - where neither of us was technically in control. I've never seen or heard of a doctor going out of her way to DO such a thing, before. ...And I was incredulous at witnessing it happen to us*.

I can't believe I experienced something like that - that my MOM had to endure something like that as she was dying, or that things like this even exist in our world. But there you go. They apparently do.

I have a photo of my mom, laying in her hospital bed, staring at a stuffed teddy bear that I'd gotten for her. I took the photo because I knew exactly what was going through her mind. I didn't have to have the cancer. I didn't have to be the one dying to know how lonely and all alone and abandoned she must have felt - with doctors who were supposed to be there to HELP her, and yet, who were trying to convince her to effectively euthenize herself "for the good of others", "for the good of her family", and "for the good of the world". Can you IMAGINE being placed into such a situation - where doctors all around are surreptitiously attempting to get you to sign a DNR drugging you, and then actually withholding that information from your family so that they don't know until it's too late and can't do anything to help you if something happened? How would YOU react if all the doctors around you were deliberately trying to kill you? commit your murder? Why was it that Kevorkian was always in the courtrooms again? Why was it, again, that society thought that what he was doing was wrong? With him, people gave him PERMISSION to kill them, and the courts still interfered. Here, at NFRH, they don't need permission. Apparently they can do whatever they like and they don't have to answer for it. What a paradox.

My mom knew very well already that she was dying. She didn't need to be constantly reminded of her dire situation. ...And then to be told, effectively, that she's holding up a bed, was exceedingly insensitive and cruel. They did everything except utter the words, "Now hurry up and DIE, please!" Now imagine if it were YOUR own mother being treated like that. (sigh) ...She laid there STARING at that god damned thing, and I KNEW what she was thinking in that moment - and it ripped me to fucking SHREADS...and there wasn't a damned thing I could DO about any of it. The doctors had all the control when I was away, and Dr. Larissa Lim, the doctor in charge, made sure to surround herself with doctors who thought just like her, and who were willing to allow this stuff to go on without saying anything to the relatives. :( I remember thinking to myself, "This whole situation is fucking CRUEL, it's NOT NORMAL, it's not FAIR, and it's just NOT RIGHT!!!" ...God DAMMIT!!! It STILL bothers me, even now. :(

THREE TIMES I caught that damned DNR back in my mother's charts. The doctor knew that I was working double the normal hours at my Census job, which was equivalent to having two jobs at the time, that I was busy with every spare other moment trying to take care of last minute details with my mom's affairs because she hadn't taken care of them like she had thought. The doctor knew I'd just had a car accident too, and that my car had been totalled, and that as a result, I was also busy trying to find a rental and a replacement so that I didn't lose my job. I remember having assignments taking me along a path 200 miles long, way out in Volusia County when my mother would call, crying and half drugged, desperately BEGGING me to come back right away because Dr. Lim was yet again making her sign a DNR form. I remember having to tell my mom that I couldn't...that I was many hours away on the other side of Florida. I remember her leaving a voicemail message on my cellphone, once. It was immedately after they'd drugged her, and she drifted off, repeating the words "Todd! Todd! Todd! Todd!...", over and over, endlessly - each word a desperate breath. She ate up the maximum allotted time for the message just repeating my name. She started out more lucid, telling me that they'd drugged her up again and that they were trying to get her to sign the DNR again. She begged me to come back and help her, and asked me where I was a number of times, as if she were talking to me, live. She asked me why I wouldn't come to help her. Then she drifted off into this..."state", and began repeating my name over and over for the rest of the message, until it timed out...a good many minutes. I remember starting to cry, being in Crescent City at the time, a hundred-something miles away, and I couldn't DO anything. :( Nobody knows what that PAIN is like, to have your own family member being treated like that, deliberately ignored and disobeyed...and to not be able to do anything about it. My mother was suffering at the hands of this god damned doctor...and so was I. She was being abused and taken advantage of...and I'd be so far away, and unable to do anything about it. When I WOULD get back, very late, she would be drugged up, completely out of it, and I wouldn't be able to have a lucid conversation with her to find out what had happned. If I even SUGGESTED reversing the medications and waking her up, the nurses would get these very shocked looks on their faces, as if I was being aboslutely ridiculous and perhaps "intervention" might be required or something! The brainwashing within that hospital was very thorough, and no one challenged or spoke up or gave thought to what was morally correct and what wasn't. To do so meant to lose their jobs. So, I'd always have to wait until the drugs wore off, and then I'd get the story and I'd always feel incredulous and betrayed by these supposedly "responsible" people wearing white smocks all around me. What was so incredible was that this doctor would DO this when I wasn't aware, and she wasn't TELLING me she was doing it, either. She was hoping that my mom would DIE before I could do anything about it. She was actively FIGHTING me...AND my mom...BOTH our wishes...deliberately doing the OPPOSITE of our wishes.

It's bad enough already, having to deal with someone in your family dying. It's quite another, and quite extremely surreal, to have to deal with cultish doctors and hospital workers who are actually countermanding your dying family member's wishes, and yours.

The world isn't supposed to work like that. It's very scary to come to the sudden realization that there are actually a vast...VAST...number of people out there who behave in the manner of a cult, and who will literally work together to fight you in the name of preventing what they perceive to be cruel, and who justify themselves by convincing themselves that you are just "not seeing the light" and that intervention is not only necessary but mandatory. I was following my mother's actual wishes. I'd made a promise to do what she wanted - even if it meant using up every last dime we had and it ate up all our potential inheritances. These people were trying to convince me that I was lying to myself. I was grateful for Hospice and what they were trying to do for people; but once my mother was in there, I pretty much ran into the very same thing all over again. They didn't understand what we had just gone through, seemed to be in denial that what the doctors were doing was wrong, and they were actually defending the actions of the rogue doctors, while at the same time, doing their best to make me actually feel guilty for doing what my mother wanted. It was very... (*sigh!*) ...It was like one of those moments where the hallways seem to be stretching out interminably long, and you feel so very much alone, all by yourself, and everyone around you is fucked in the head. ...But the paradox is that in their world, THEY'RE the normal people and YOU'RE the insane one. I felt like I was in the middle of a very dark and twisted movie. You cannot possibly understand until you experience it for yourself.

Mind you, back before Hospice, in amongst working, I'm having to take my mom back and forth in a cycle between rad treatments, chemo treatments, hospital stays, then moving to assisted care facilities, then home. (sigh) Then the cycle would repeat again as Medicare time limits and expense limits would be reached. I was constantly busy and really had NO time to myself. In amidst all of this, the doctors were fighting. Dr. Lim and her staff were constantly negative and were very depressing and cruel. Then there were the doctors who needed candidate patients to experiment with a new cancer tool called the "Cyberknife", which at the time was new and going through trials. They were continually trying to get Mom on the list for it, but complications would always occur which would stall it. They would tell her that it would give her a chance and that with it they could remove the cancer from her lungs. Dr. Lim would argue with that, and advise that the cancer was too infused throughout her lungs and spreading way too quickly for anything to help. The imgery actually wasn't backing that up. She was actually right, but she was GUESSING, at the time. While it may have been true, the fighting with us in itself, and the deliberate countermanding of our wishes NOT use a DNR...this was cruel and wasn't at all funny. But eventually, while the arguments were going on and nothing was happening with the Cyberknife, Mom reached that point where it actually had become impossible to do anything at all and I had no choice but to put her in Hospice.

VERY early one day, after having been out all day working and trying to take care of things and having literally but only a couple hours of sleep, I got a call - I think it was around 3:30am - from someone at Hospice telling me I might want to come...that "it's time." I was SO VERY tired. I literally had to push myself up with my eyes closed, and I got out of bed. I remember literally banging into walls, stubbing my foot on the foot of the bed, forcing myself to get dressed. IT took me forever. I called my mom's sister, and she and her husband came up from Leesburg. I remember when I got there, the nurse actually asked me why it took me so long to get there. (*sigh!*) I'm just a cruel, callous, insensitive bastard, I guess. Yah. That's why.

I want to say that my mom died in the company of family, knowing that they were there. But by then she had been in a coma for days and was not aware of anything when she died. ...Not of me. ...Not of her sister and brother-in-law. I never got to say good-bye, and that bothers me so much. I always felt guilty because I was always gone, always far away, trying to take care of an AWFUL lot of ridiculously unbelievable and overwhelming things going on simultaneously (granted)... But still... That wasn't fair. That wasn't fair. NONE of it was fair...what happened.

At the same time that I was having to deal with my mom dying, I had six (SIX!) local ham radio operators cruelly stalking and harassing me (see Where'd Todd Go?...On Dealing With Psychopaths and Stalking) over control of a program called "Alachua County SKYWARN". I'd done a great job with it. I'd founded it myself; did pretty much everything by myself because no one else wanted to do the real hard work. We were known across the country and helped to form other similar groups, nationwide. There were no problems with the program at all. And we did it without need of dues, or grants, or donations. But apparently the hams saw my program as overshadowing their own ham radio organizations' popularity and publicity and they didn't like it. So they cruelly went to people in emergency management and in the Weather Service and did everything they could to destoy my name, and all trust and confidence in me, and in the organization. I had to deal with hams calling me up and leaving threatening messages on my phone - filling up the answering machine so that it could hold no more messages, ringing my phone off the hook until I answered, email bombing me, pager bombing me, using Spoofcards to falsify CIDs so that they could leave cruel stanzas from songs on my machine like "Why don't you just BREEEEAK down!" They attacked and frightened my friends, and my associations. They threatened to destroy one friend's Naval career by falsely telling the Navy that she was a security threat. I'd call the police and the police would even sabotage my cases because they knew the Emergency Manager, who was being influenced by the hams. The hams threatened me, the organization. They stole passwords and hacked into EMWIN equipment (weather-related computer and satellite downlink equipment that had been given to Alachua County SKYWARN by the State and federal government) and perused directories containing PII information (it stands for 'Personally Identifiable Information'). At some point or another, I'd called the Gainesville Police Department, the University Police Department, the Alachua County Sheriff's Office, the State Attorney's Office. The hams knew everyone, and everywhere I went I got blown off. One day early on, while I was still taking care of my mom, one ham called the house and even feigned an emergency and made my mom actually disconnect from her O2 machine and to come get me off the john some 60 feet away. I remember hearing her, gasping for breath, slapping her hand on the wall as she approached, wondering what was so urgent that she would disconnect herself and come to get me so far away in the bathroom. Was she having a heart attack and coming to tell me to take her to the hospital? When she told me what it was about, I was livid. I slowly walked her back to her bed, and hooked her back up to the machine. When I answered the phone, the individual admitted what I had suspected - that there was no actual emergency, that she just wanted me to pick up the phone so that we could 'talk'. She DID know my mother's condition, too, when she did that - AND HAD RECENTLY LOST HER OLDEST DAUGHTER TO CANCER, HERSELF!!! And on the DAY of my mother's funeral service, one ham was even emailing me, harassing me with complaints that he said another ham was writing to ARRL Section Managers about me. ...What? The day of my mom's funeral was the appropriate time for this?

I no longer trust hams because of how I was treated by them, especially for how they treated my mother, and for their lack of compassion even after she had died. I no longer want anything to do with ham radio for that. I have dealt with hams for many years and I have been consistently burned by them. I repeatedly find them to be immature, brash, unbehaved, uncontrollable, not capable of listening to authority, they do what they want regardless of the laid down rules, they're wanting of the impossible, and hide to the four winds when you need them to do a job, they bitch and complain about each other endlessly, and they're never satisfied. They big-headed, think they're priviledged because emergency management treats them with far too much leniency. And most of all, they're extremely unprofessional and unreliable. The ham license today doesn't mean the same thing that it used to. We should have never allowed the code requirement to disappear. It would have kept out the people who weren't serious.

And because of what happened to my mother at the hands of one doctor at North Florida Regional, I no longer trust the medical profession to be honest or capable of doing the right thing, either. What matters instead (comes the ultimate realiation to me) is the 'bottom line'...the money, someone taking up space in a bed that they consider to be better used by someone who is going to 'make it'. I'm reminded of the ST:TNG episode "Half A Life" with David Ogden Stiers playing a man past a certain age on a planet where once people reach the age of 60, they have to engage in a ceremonial ritual suicide and step into a chamber to disintegrate themselves "to avoid old age, infirmity, indignity, dependence on others, and the cruel uncertainty about when the end would come." ...Or more basically, so as not to be a burden on the rest of society. I think we're actually there, now. My mother should not have been so cruelly treated. I shouldn't have had to deal with all of that myself, either. It was so unspeakably cruel.

I NEVER got to say goodbye to my mother because I had to keep working, and because I had to take care of a lot of last minute affairs which should have been taken care of but that my mother I think didn't want to take care of because no one wants to admit that they're dying, I guess. ...And that's what taking care of your "final affairs" would acknowledgement that this really is "it." (sigh) I guess I don't blame her for it. I understand it completely, in fact. But when they finally called me that night...I was SO tired. I was getting no sleep at all. Still, I stayed with my mother until her last breath. In fact, I can tell you the exact minute and the second that her last breath actually occurred (I was watching her closely; couldn't help it), and that the nurse's written time on her death certificate is wrong by some 15+ minutes. My mom never reawakened so that I could get that final good-bye. :(

I will have ALL of that experience in my mind and in my heart to deal with...for the rest of my life.

Christmas that year really sucked because I had Mom's bad experiences to be forced to repeatedly have to think about over and over in my mind after she died.

...But it was made a little easier by having met Kathy.

See, at the same that Mom had died, I'd met Kathy...oddly, out of having to inventory some items that Mom had left in a storage room in a storage facility that Kathy owned. As I paid the bill, we just started talking... Kathy was so NORMAL. (long pause) No, then again, I take that back...she's NOT normal. She's both. She's like ME, in fact; and it was refreshing. I got to know her. ...Someone who thought like me, who laughed at my stupid jokes, who played jokes on ME, who could could be childish where everybody else insisted upon seriousness; who could hammer, cut, saw, stain, sew, AND who didn't mind getting greasy and who could fix a car problem...who enjoyed children and being with her grandkids, going for walks in the park, listening to a cantata, or rocking out to the latest pop or rock music, and who had no beef with slipping an ice cube down my pants to get me back after I pulled a prank. We've been seeing each other for 3-1/2 years, now, as of the time of this writing.

So I guess you could say that in the midst of death, came another life...

There are photos of my mother and some small details about her life in my photo album on my Facebook page, but you have to be a "friend" in order to view them, right now. Unfortunately, after all the negative experiences I've had with people these past number of years, I am finding it harder to trust. Eventually, I plan to duplicate the photos on my personal web site, which is open to all.

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