Truth or not

JerzyGrrl · June 2016

My cancer diagnosis wasn't actually a total surprise when I heard it. I had an ultrasound done for kidney stones, then got called back for another. Callbacks are great when auditioning for a part, not necessarily great when folks are looking at your innards. Ultrasound #2 was only on one side and higher than the first. I asked the tech, the same one I'd seen before, if the order said what this one was focusing on, and she said, "Oh, I don't know. I think the first one was blurry or something." Did I just hear the buzzer? Probably. She does ultrasounds, only ultrasounds, all workday and workweek long. If she did a lousy ultrasound, she'd know. Plus this one was in a different locale. I realized as soon as she said that, that of course she can't say a possible diagnosis, so of course it was pointless for me to have even asked. But still. Perhaps she should practice the "beats me" shrug while affecting the "they tell me nothing" facial expression.

When the lab called me and informed me I was scheduled for a CT scan on a Sunday (a SUNDAY), I went over and had the thing done. The contrast milkshake gave me a blinding headache, the tech forgot that I'm allergic to latex, but other than that, it went OK. We chatted a bit, I used the on-the-table time for some meditation and focused breathing, and then it was time to change back into my civvies. As I was leaving, the tech gave me a "oh, you poor sweet thing" look and said, "Good... luck..." I definitely heard the buzzer on that one. Sigh.

Yeah, I'd no doubt be getting some sort of news, although I was figuring that I had a kidney stone that was not quite as big as the Hope Diamond and not nearly as sparkly. Which, after a call from my primary care physician and two referrals, was not exactly the news. My encapsulated tumor is a tad bigger than the Hope Diamond, as it turns out.

Through all of this, I haven't been exactly forthcoming with my friends and family. Aside from medical folks, only about half a dozen folks know. Other than that, if I do share any info, my story is, "Remember when I got clobbered by kidney stones in February? Yeah, still following up on that." Most likely, when I have the date for my surgery, I'll share some more info with some more folks. But I don't want others' drama, I don't want to be pink-washed, it's not any business of a bunch of people and doesn't belong on social media.

So, truth. Or not. That in and of itself is aggravating.

hardo718 · June 2016

Kudos to you Jerzy,

and can I just tell you, I LOVE your sense of humor!! Unlike you, at the time of my diagnosis, I was working in the medical field so not only was I able to get very quick results, but I had doctor friends to hold my hand and guide me along the way with their vauled opinions.

Just something else for you to think about: you might consider naming your little beast Hope....as in Hope Diamond. Too funny. I refer to mine as Bob the Blob.

Hugs & Prayers coming your way,

Donna~

donna_lee · June 2016

I, too, like your BAAAAAAD attitude

It will carry you a long way and help in the healing process. Since mine was so totally unexpected, and my husband was very distressed, I think the entire town knew about the cancer dx and the 5-7 months to live prognosis in less than a week. You can refer to the original story by clicking on my user name.

Instead, I am at the 10 year anniversary of my new life. At this time, in 2006, I had a Foley cath and the bag hanging on the side of the bed; an abdominal drain tube between my ribs; a central line next to my clavicle (IV, pain pump, and any and every thing they needed to administer-except solid food); with help, could sit in a chair for 1-2 hours; and the need to sleep-a lot.

Now I just stumble out of bed at night and hope I sit on the pot; have periodic brusises from blood tests or CT's; back muscles that knot under stress from the separated ribs; and still sit and sleep. All, hopefully, without cancer-Clear Cell RCC.

And I just thought I had a gall stone when my PC ordered an ultrasound. I'm not an actor (keep a straight face on that comment); but taught PE and Health Ed, and have been mistaken for a nurse more than once because I know a lot of basic terminology.

Rapid fire results are not always in the cards, depending upon where you live and the diagnostic and treatment facilities. Some can do a test, have an immediate reading (think big facility with several on-staff radiologists) and have you see the Dr. later that day. Mine is test one day, let the rad. interpret, send results to Dr., let him read, and see him or Onc. nurse a week later. Cultivate the nurse, and you can call in a couple of days if you are desparate to know any bad news. At this point, I assume no call is good or NED news. Definition...NED= no evidence of disease. An estremely sought after and popular Dx on follow-up test results.

Good luck on the next few steps to getting rid of your Hope Diamond. Personally, I prefer 2 cts. on my finger.

Hugs,

donna_lee

JerzyGrrl · June 2016

hardo718 said:
Kudos to you Jerzy,
and can I just tell you, I LOVE your sense of humor!! Unlike you, at the time of my diagnosis, I was working in the medical field so not only was I able to get very quick results, but I had doctor friends to hold my hand and guide me along the way with their vauled opinions.

Just something else for you to think about: you might consider naming your little beast Hope....as in Hope Diamond. Too funny. I refer to mine as Bob the Blob.

Hugs & Prayers coming your way,

Donna~

Thanks and it's not Hope, it's 42

Thanks, Donna. Without my sense of humor...?! Well, I'm not sure where I'd be. I have worked in the medical field, but not for a few years. We had massive lay-offs, my whole department got the ax (even the voluteers... ouch, how tacky), then they declared bankruptcy. That coincided with my spouse having critical cardiac issues and eventually needing caregiving and hospice, so once I set most of my ego aside it actually worked out for me. I only carry a pager in my nightmares nowadays. Unfortunately, my little dog has a "snore" frequency that sounds like the pager vibrating on the nightstand. That's good for a laugh or two in the middle of the night, but then I get to go right back to sleep.

I used to be the lucky one they'd call to scrape people off of the ceiling when techs suddenly clammed up or moved a monitor, folks were too obtuse, or diagnoses were too specific. I also coached staff and support folks on how to communicate info to patients and family. So I sort of know the drill. The person who's been going to appointments with me is someone I used to work with, a really solid medical type and a good friend. Also, I trust my medical team. So all that helps immensely.

I honestly wasn't too concerned about the results. That's not bragging. It's not denial, it's just that I figured whatever it was, I had it in the months before the diagnosis and wasn't freaking out, so why freak out just because all of a sudden I had a picture... a diagnosis... and the beginnings of a plan of care? Also, I'm cool with not being at the front of the line to start with, because that means I'm not the crisis du jour. I do have faith that if something comes up and that's where I need to be... I'll get "cuts."

When I was looking up the size of the Hope Diamond, I thought "Hope" might be a good name, although I quickly realized I don't want to risk carrying the metaphor too far. After all, it won't be long before "Hope" is removed and relegated to the red bucket... Well, you get the idea. So its working name is the long-awaited answer "42" (I'm waiting to see what the question is).

Thanks for the encouragement. Just a couple of days on the forum and I'm already seeing what a great group of folks this is. Hugs and prayers back atcha,

Jerzy

JerzyGrrl · June 2016

donna_lee said:
I, too, like your BAAAAAAD attitude
It will carry you a long way and help in the healing process. Since mine was so totally unexpected, and my husband was very distressed, I think the entire town knew about the cancer dx and the 5-7 months to live prognosis in less than a week. You can refer to the original story by clicking on my user name.

Instead, I am at the 10 year anniversary of my new life. At this time, in 2006, I had a Foley cath and the bag hanging on the side of the bed; an abdominal drain tube between my ribs; a central line next to my clavicle (IV, pain pump, and any and every thing they needed to administer-except solid food); with help, could sit in a chair for 1-2 hours; and the need to sleep-a lot.

Now I just stumble out of bed at night and hope I sit on the pot; have periodic brusises from blood tests or CT's; back muscles that knot under stress from the separated ribs; and still sit and sleep. All, hopefully, without cancer-Clear Cell RCC.

And I just thought I had a gall stone when my PC ordered an ultrasound. I'm not an actor (keep a straight face on that comment); but taught PE and Health Ed, and have been mistaken for a nurse more than once because I know a lot of basic terminology.

Rapid fire results are not always in the cards, depending upon where you live and the diagnostic and treatment facilities. Some can do a test, have an immediate reading (think big facility with several on-staff radiologists) and have you see the Dr. later that day. Mine is test one day, let the rad. interpret, send results to Dr., let him read, and see him or Onc. nurse a week later. Cultivate the nurse, and you can call in a couple of days if you are desparate to know any bad news. At this point, I assume no call is good or NED news. Definition...NED= no evidence of disease. An estremely sought after and popular Dx on follow-up test results.

Good luck on the next few steps to getting rid of your Hope Diamond. Personally, I prefer 2 cts. on my finger.

Hugs,

donna_lee

Baaaaaad attitude

Thanks, Donna_Lee. Yup, the attitude definitely helps. Hoping for the most part it'll serve me well.

My spouse once said, "I don't know what I'd do if anything happened to you," so I'm glad for the timing. If something happened to one of the family (even one of the pets), he pretty much froze in place like a little dog wearing snow boots for the first time. Noooo thanks.

I get mistaken for hospital / medical admin from time to time and recently an employee at a skilled nursing facility thought I was "State" and was totally freaked. She shared that information with me and I innocently asked her if there was something she was doing, or not, that gave her good reason to be afraid of State. It does come in handy but I save my "Golden Buzzer" for special occasions, generally using it to advocate for friends who are patients or residents. I like to think I can be pleasantly relational yet firm. Of course I may be seriously mistaken although I haven't noticed staff rolling their eyes or scattering when they see me coming.

Congrats on your anniversary. It's sure hard to hold ourselves out at arm's length, but looking back sure puts a lot of things in perspective. May you and Uncle Ned hang out together.

Hugs,

Jerzy

Footstomper · June 2016

hardo718 said:
Kudos to you Jerzy,
and can I just tell you, I LOVE your sense of humor!! Unlike you, at the time of my diagnosis, I was working in the medical field so not only was I able to get very quick results, but I had doctor friends to hold my hand and guide me along the way with their vauled opinions.

Just something else for you to think about: you might consider naming your little beast Hope....as in Hope Diamond. Too funny. I refer to mine as Bob the Blob.

Hugs & Prayers coming your way,

Donna~

Slightly different

I was sent for a sonogram for kidney stones. Before I got home, my phone went off and I was sent to a urologist who sent me for an MRI and CT scan.

As I entered, the Radiologist said, "and is this your first time with Cancer?"

Whaaaat??!!?!

It turned out that, yes it was.

Its called Darth; Darth Tumour

Oh by the way, 'How many roads must a man walk down?'

JerzyGrrl · June 2016

Footstomper said:
Slightly different
I was sent for a sonogram for kidney stones. Before I got home, my phone went off and I was sent to a urologist who sent me for an MRI and CT scan.

As I entered, the Radiologist said, "and is this your first time with Cancer?"

Whaaaat??!!?!

It turned out that, yes it was.

Its called Darth; Darth Tumour

Oh by the way, 'How many roads must a man walk down?'

Yikes

Yikes. That was a little too on-task. Did they have to do damage control? BTW, I'm loving these names.

My "Whaaaat??!!?!" moment when I went for my CT was when I handed the receptionist my ID and insurance card, she looked at them and said, "$100." Nobody had bothered to tell me about the co-pay. "Resistance is useless."

Jerzy

Footstomper · June 2016

JerzyGrrl said:
Yikes
Yikes. That was a little too on-task. Did they have to do damage control? BTW, I'm loving these names.

My "Whaaaat??!!?!" moment when I went for my CT was when I handed the receptionist my ID and insurance card, she looked at them and said, "$100." Nobody had bothered to tell me about the co-pay. "Resistance is useless."

Jerzy

You've got a Copay

I'd only been in the US for a month and I was sent for an x-ray. I was told I had a copay. A COPAY!?

We dont have copays in England. I assumed it was some kind of vaguely cute furry somehow lethal lump.

Copays are far scarier than cancers!

foroughsh · June 2016

Almost same story but

Almost same story but different reactions. I had flank pain so urologist wanted me to have US to make sure it wasn't a kidney stone. I was praying to not having kidney stone and my dream was fulfilled, wow it's not kidney stone, oops it's cancer. Had I known about RCC, i'd have changed the subject of my prayers. Now and after two years I'm trying (not very successful) to see things like you do. So congratulation for having such good perspective on life. I was ruined once I learned about my tumor so I really know how positive reaction can make things easier.e I may you have easy surgery and quick recovery

Forough

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