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 Post subject: Hurry up and wait
 Post Posted: Tue Apr 17, 2018 9:27 pm 
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My father was a young svelt man when he was drafted into the army. After serving his time he struggled with his weight for most of his adult life. I never categorized him as being obese but he was always over weight.

In the summer of 1989 he was 65 years young soon to be 66. I’d visit my parents at least once a week as we lived not far from each other. I recall visiting my parents one day and commenting to my dad that he looked like he was losing weight. He denied it but conceded that he had been sick with flu-like symptoms. This exchange recurred during several consecutive visits until one night, my brother just happened to be in town and was staying overnight at the house with them, when my father needed to be taken to the hospital because he was having difficulty breathing.

Initially, I believe he was diagnosed with pneumonia. But as his days in the hospital went by it was apparent that something more was going on though the doctors couldn’t pinpoint what it was.

After what seemed like a ludicrous amount of time, they finally diagnosed him with having AML (acute myelogenous leukemia). Chemotherapy back then was lovingly nicknamed “shake and bake”. As the drugs where being administered into his body his body would react with having a chills-like symptom (shake) followed by fever (bake). I can assure you this was very distressing to witness and undoubtedly more stressful on the one experiencing it.

My father rose to the occasion and did his best to fight his battle with AML but in five short months AML won.

My point to this brief moment in my family’s history is simply I know what I’m up against and I’m not afraid. The hard part isn’t the battle. I can fight the same way he did. It’s the winning that we have no control over. We can only do our best with what ammo we’re given. I’m still waiting to find out what I have before I can proceed with the process of gathering the best ammo possible. When you are told that you have “cancer” your immediate reaction is: how do we find the best oncologist and let’s get moving on eradicating this thing now!

But it doesn’t work that way. You have to get referrals and schedule appointments and dish out money upfront then more appointments for tests, and biopsies, and scans, followed by more appointments with doctors. A week will go by simply because it takes the insurance company that long to approve a procedure and although doctors and hospitals will still take you they don’t like it and will require an upfront deposit of several hundred dollars unless they have that referral confirmation number. And even with the referral they still need a deposit of some sort.

Hurry up and wait.

So, since the biopsy did not offer any help in determining what I’ll be fighting, we had to schedule a PET scan in the hope of getting that question answered.

The PET scan was scheduled for April 16th at 9:00am. We showed up at 8:30am to register. It took us way longer to register than it should have and by the time we were done it was 9:15am.

Someone from radiology came to escort Rob and I but when we reached a certain point Rob was instructed to stay in the designated waiting area as I continued down the hall without him in the opposite direction.

The radiologist took me through a large door that led to what looked like a dungeon. She explained that we were going to their “mobile” unit. I was instructed to step onto a lift gate and to stand on a large yellow dot (like from a Twister game) and hold securely to the railing on my left.

She pushed a button, the front end of the lift gate folded upward, then the lift gate started to raise us up several feet off the ground until the lift gate stopped. The front end folded flat onto the ledge of the trailer and a large hidden door slid open along the side of the trailer and we went inside.

The inside of the trailer was small. In front of me were two computers set up on a small makeshift desk that ran almost the length of the space of the room. A second radiologist introduced herself and welcomed me. To my left was the room with the scanner. To my right was a much smaller room. I was led to the room on the right.

In this tiny room was a reclining chair which took up most of the space and was situated mostly on the left side of room. A tower space heater was in the corner in front of the recliner’s left side. To the right of the recliner was a storage shelf, and above the shelf and behind the recliner were some locked cabinets. I was asked to sit in the recliner.

As the second radiologist stuck my finger to check my blood sugar the first radiologist proceeded to ask me oodles of pre-scan questions. The second radiologist followed up with sticking a needle in my arm to inject a solution to aid in rendering images from the PET scan.

The solution that was injected would take 90 minutes to circulate through my body so all I could do was recline and wait although there wasn’t enough room to fully “recline”. They dimmed the lights and left me to “relax”.

I sent several text messages to Rob to let him know what was happening. He was bummed that he couldn’t be with me but I told him there was no space for him. Not even an extra chair.

I was just getting comfy in the recliner when the second radiologist came back to move me to the room with the scanner. I still had 30 minutes to wait but they needed to prep the next patient so I had a regular chair to sit on while I stared at the giant tube.

When it was time, the radiologist came in and made sure I wasn’t wearing any jewelry or a belt or glasses. She instructed me to place my head in a cradle on the scanning table. She placed a cradle under my legs to slightly elevate my knees and wrapped a moderately tight band around my shoes to hold my feet together and keep my legs still. She offered me a blanket but I declined. I’m still getting miserable hot flashes and the last thing I needed was to feel like a was going to spontaneously combust.

She wrapped me from right to left with a wide weighted band across my chest followed by a cross over band from left to right to hold my arms straight at my sides. I kinda felt like a baby swaddled in a blanket. (Good thing I declined the other blanket!)

She said I could breathe normally but asked me to try to not to move at all. If I needed anything she said to let them know. They would be able to hear and see me at all times. This part would take about 20 minutes. She left the room and I closed my eyes.

Like the last two scans the whirling hum of the scanner began and the table I was on began to move me head first into the tube. Unlike the CAT scan my eyes could sense that I was inside a tunnel as it became much darker. The scanner moved very slow and stopped for longer periods of time.

During the paused position I could feel my heart beating rapidly. I wasn’t afraid of the machine but I guess it was an uncontrolled response to the fact of why I was there in the first place. To take my mind off of that fact and to pass the time I tried counting to sixty twenty times but felt myself dozing off and often lost count. I was afraid I would fall asleep and start snoring or try to roll over. I hate lying on my back especially now that I’ve lost so much weight. My back bones where uncomfortable being on the hard surface.

Finally it was over and the radiologist helped me to sit up. I needed a minute before I could stand up to leave. We had other errands to take care of and I hadn’t eaten or had much to drink in nearly twelve hours.

I was escorted back to where we left Rob (who was well hidden in the farthest corner of the waiting area). It’s weird to feel exhausted without having done much of anything at all. It’s a bit scary to realize how quickly your body burns up energy when you’re aware that your body is working overtime to keep itself alive. We took care of some other medical related business before heading home to eat.

We won’t know the results of the PET scan until Wednesday at the earliest.

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     Post subject: Re: Hurry up and wait
     Post Posted: Tue Apr 17, 2018 10:28 pm 
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    Sing a song in your mind, preferably slow and long prior to entry.

    I personally prefer bohemian rhapsody.

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     Post subject: Re: Hurry up and wait
     Post Posted: Tue Apr 17, 2018 11:16 pm 
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    It does seem as if it takes longer to get the full diagnosis now, but maybe that's because the treatments are so specific and they need more information to make sure you're getting the best possible chance. The more information your team has, the better.

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     Post subject: Re: Hurry up and wait
     Post Posted: Wed Apr 18, 2018 12:16 am 
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    Shiny Red Star IRC Quote of the Moment Has collected at least one unit Here for the 10th Anniversary Mined 4 Erf This user is a Tool! Won Mine4erf for the Gobwins Won Mine4erf for the Marbits Was an active Tool on Free Cards Day
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    I'm sorry you had that with your Father. But sort of glad you're taking it as a weapon in this Battle you're in.

    So this is going to sound flippant. But the lack of glasses would leave me feeling extra vulnerable and helpless. Especially without one's partner there! No wonder you felt tired. You think you didn't do a lot but stress and all are energy burners.

    So much patience asked of the patient. I think ArtyD has good advice.

    * ~ * ~ *

    To your first post saying you think this will be boring. I keep thinking. Oooh this is interesting. What a nice simile with the Twister dot. I can see that. I can see the tiny room with no room for another chair and the process of being moved along for the next person going through this same but unique hell. And then there's always that thought. This isn't "interesting" this isn't a well written glimpse of a story. This is Linda! And what's happening! And look at the graciousness she shows in telling this.

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     Post subject: Re: Hurry up and wait
     Post Posted: Thu Apr 19, 2018 7:19 am 
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    Oh yea, I know that one.

    In my case, I had an Iodine Contrast Dye for the MRI (tastes like a ball-point pen exploded in the back of my mouth) so it would more clearly pick up the cartilage. Plus the various CAT scans. Or maybe the contrast was for the CAT, I honestly can't remember anymore. Either way, during my chemo, I was in both at least once a week.

    Fun fact: The tune 'Stayin' Alive' by the Beegees has precisely one hundred beats per minute. I learned this in my CPR class, I used it while being scanned. Feel free to do the same. In general, thinking about music helped keep me from being so bored that I would fidget (high-end ADHD case here), maybe it'll help for you.

    I find that if I distract myself with something while being scanned, it tends to go faster. Maybe mentally review dialogue for the webcomic, or plot how to get a cowflop into the insurance company's paperwork, perhaps review a favorite song, or mentally outline a random bit of storyboarding, maybe come up with something scathingly sarcastic for a Hamstard comic... you know, the usual.

    And yea, a hospital is a bureaucracy, even if it is a medical bureaucracy. And of course the damn insurance companies will do ANYTHING to get out of having to pay for something, so make sure all those I's are dotted and T's are crossed, even if it takes an extra day or two. Yes, it is frustrating, yes it is (extremely) aggravating. But it's also a Thing. Which exists. Unfortunately. Pile it on the list of 'crap I have to deal with', maybe you'll be able to make another couple golems out of it if you can get a reliable Dirtamancer hired on.

    My problem was the reverse of yours, in that I was constantly cold instead of having hot flashes. By the end of the treatments, I pretty much looked like a skull on a stick, and went from a lean and muscular (less than 2% body fat) 140 Lbs to a very unhealthy 89 lbs, so I was always gratefully accepting the warm blankets.

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     Post subject: Re: Hurry up and wait
     Post Posted: Thu Apr 19, 2018 10:39 am 
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    Thanks for the update! You don't owe it to us, but we all appreciate it! I hope hope HOPE that they get you a diagnosis and begin treatment soon (and that it's a good prognosis, of course!)

    Whatever happens or is coming, just know you've got a lot of people caring for you and sending you good thoughts.
    As I said in a previous post: We love you, we support you, and we're here for you (from the community, who I have arrogantly decided I can speak for on this subject, ;) )

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     Post subject: Re: Hurry up and wait
     Post Posted: Fri Apr 20, 2018 6:42 am 
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    The sounds of an MRI machine remind me of the OLD video game Space Invaders, I can't help but visualize a game in progress when I'm listening to it.

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     Post subject: Re: Hurry up and wait
     Post Posted: Sat Apr 21, 2018 2:34 pm 
    Pin-up Calendar and New Art Team Supporter This user is a Tool! Here for the 10th Anniversary Has collected at least one unit Won Mine4erf for the Marbits Was an active Tool on Free Cards Day
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    Quote:
    When you are told that you have “cancer” your immediate reaction is: how do we find the best oncologist and let’s get moving on eradicating this thing now!


    Couldn't have said it better. This is exactly the reaction I had when my dog I was told my dog had cancer.

    Sadly, like you said, it doesn't work that way...


    Still, medicine improved in a dramatic way since the 80's and we understand cancer better than ever. The only thing I can hope for you is that money doesn't run dry for your treatment. Beside that, enjoy life as much as you can.

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     Post subject: Re: Hurry up and wait
     Post Posted: Sun Apr 22, 2018 5:29 am 
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    Sat here waiting for a referral at the moment, albeit for something far less immediately dangerous. The estimated time is "eh, maybe around a year somewhere?". Some sort of automated system online where you could check your actual position would be really nice.

    I hope you and Rob have an amazing time today, together just the two of you x

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     Post subject: Re: Hurry up and wait
     Post Posted: Tue Apr 24, 2018 1:29 am 
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    Earnestly wish you improved health, Linda. I think about you a lot. I really want you to get better and to be happy.

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