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"Is the 3rd Time the Charm?" – Only The Shadow Knows…

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, I just wrapped up my 3rd scan cycle from last year’s fight…I’m 9-months out of my last treatment now…sitting back in the blood labs and in the infusion department, it seems just like yesterday’s nightmare…crowded waiting rooms, standing room only…new folks coming over the hill and into the cancer system quicker than we can find chairs for them all…

Such is the business of cancer…

My hospital is ‘tech savvy’ and they have a system in place where you can exchange emails (like a PM), make appts online and view your test results online as well. I had requested my latest CT report and went over it prior to yesterday’s visit.

I’m fairly adept at interpreting the results, and new terminology and phrasing that I come across, I get myself educated and up to speed quickly. The guy that wrote this one was very good and thorough. What was fascinating was that the scans picked up a problem I experienced in childhood….a trauma that had occurred when I was just a boy. Only it was never reported before. Each person writes up their own summaries, but this guy was thorough.

I found it very interesting at what the CT actually sees…it’s not all about tumors as it turns out. The CT has eyes we didn’t even know it had…it sees the past – as well as the future.

So, overall things look pretty stable. As always, there are a couple of potential minefields to be wary of. I’ve got a 6mm hypodense foci of ground glass NOW in the LEFT lung (the good one)…the status is “too small to characterize.” So, we’re watching this closely.

We’re still watching the 1cm lung nodule in my right lung….where all of the surgery and radiation took place….it showed up on the 1st scan following all of that carnage and still presents today…stable and we’re watching it. How in the world could anything live through that surgery and radiation?

I don’t get that…5 more wedge resections and pulling out 2 ribs and blasting it with 30 rounds of IMRT radiation should have nuked even the cockroaches…I’m sure not breathing the same after all of it…CT results says “noticeable loss of volume.”

Just ask anybody in Chicago…I couldn’t keep up with the group…on my next trip somewhere, I’m joining the Hoveround Tour Group, where I can power chair my way around the city:)

I’ve got confirmation of 2 hernias now – inguinal and umbiblical…they are small and no surgery is recommended at this time…but they hurt and are a tad painful, especially when trying to raise up from a prone position…like out of bed, or off one of the flat scanner tables.

And the latest thing that has got my attention…there is a new 6mm spot along the medial margin of the portal venous system (liver)….again, currently too small to characterize….we are again watching this. This is a little disheartening as I’ve been clear in the liver for FOUR years.

I’m not eligible for a liver resection…the last attempt failed as my liver was deemed unable to sustain my life and had they taken 80% as planned…I would have died in the O/R, according to my world renowned surgeon at Baylor….so they switched to RFA which was successful….and has done me well.

So, if it is something…it would have to be RFA or a chemical intervention. And you know the problem with our tumors, is that it is akin to spinning the slots at the casino….only we hope that when the tumor does land, it falls in a place that some type of surgical intervention can occur…..

I’ll just have to wait and see…

My next scan cycle will put me at a year mark post treatment. For those that were here then, I had written a post titled, “The Chemo Wars – What’s the Real Story.” In there, I said that if I invested a year into the fight, that I expected to get my year back out of it OR “I Was Slipping…”

So, next scan cycle will be interesting…I’ve never gone longer than 12-18 months without something showing up that we watched – and then had to act on…and that was at the very beginning of the journey.

Since then, recurrence has come quicker and quicker…usually a couple of months or less…and then we watch and wait till it gets bigger and then go after it. It seems that recurrence begets recurrence, at least for me. As I’ve said before, we should all expect to have at least one recurrence in our fights.

But, it becomes a different mindset once you begin to experience MULTIPLE recurrences and in fairly short order. You can’t get it out of your head…at least not for too long….

So, we watch and wait…and hope that these spots, new and old, remain stable for the foreseeable future…the next scan should be filled with much heralded anticipation and apprehension.

I wasn’t going to post with all the stuff we’ve got going here…but since we’re all taking notes and examining one another’s cases, I thought it was good fodder with that regard.

As Walter Cronkite used to tell us, "And that's the way it was..."

-Craig

RobinKaye
Posts: 93
Joined: Nov 2011

Hi Craig,

Are you at NorthShore? We have all the records on line but they don't post much more than appointments and bloodwork...had to pick up the CT and Pet.

Robin

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm in the Dallas/Fort Worth area - UT Southwestern Medical Center.

It's pretty handy and conveinent...I like getting the results beforehand so I can eyeball them and extrapolate any questions I have before the consult.

-c

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I guess it is a case of same old crap,different day. I hate wait and see but what do you do? I expressed a concern with my doc on wed that the drugs he wanted me to try have a bad habit of causing cancer and for bringing on renal failure. He said that I was being monitored for ca . I replied yeah but only one kind and if I loose my kidneys ,being immuno-compromised I can't have a transplant. Seems to me that when we reach a certain stage we require a keeper more than a doctor. Best of luck mate ,I know that the issues so far are small and inconclusive but we are aware that that can be for a very short time,Hugs Ron.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thank you for your reply. And I’m glad to see you changed your mind and came back to the fold. I certainly understood and respected your decision to leave, but somehow was hoping you would come by back from time to time. You do belong here…this was your place when it all begin…I can only imagine the changes you have seen as I can begin to see that from the 3 years I have nearly been here.

You and Phil were two members who I watched when I came here….Phil because he was in the same time frame that I was…and you, Ron, because of all the collateral damage that you have had to endure in your fight.

I’ve said this before, but I’ve always seen a little bit of my future in you. And it’s for reasons like this that I hope you continue to stay with us…I was a pretty hardcore veteran when I hit the beach running here…but still I was looking for my own personal examples so I could look at my fight through folks like you and Phil…both of you were ‘longevity’ but at opposite ends of the spectrum.

Without you around, I would not have had the opportunity to learn of your story and read of your hardships and struggles and what I might be facing….we’re eerily similar in many ways.

Like you, I worry incessantly about my Renal System…Camptosar/CPT-11/Irinotecan is notoriously harsh on the kidneys and I feel the last 12 rounds I sucked down of that definitely left my kidneys in a more compromised state than ever. I had all sort of troubling and embarrassing episodes when I was on that.

Now that the chemicals have faded, things are better, but as with most things we take – we’re a little bit less today than we were yesterday.

Your willingness to share your life and your story certainly made a difference to me and spoke to me in ways that one can never predict. I love open and honest communication and dialogue…nothing buzzes me more than the sharing and connecting….that innate human need to shout out to another and try to lighten their load – share a joke – have a hug – shed a tear.

So, just thanks for coming back and I’ve always appreciated the dialogue that we’ve had…I think you’ve seen in me a confirmation in yourself that you are not the only one.

And congratulations once again on 14-years cancer free! I know you’ve “paid the cost – to be the boss” but you did it, though and you stand as a living, breathing monument to how one can overcome cancer but what the other side is that comes with it.

One of these days, I’m going to open a post and we’re going to talk about this – as I have this insatiable desire to talk about a land that I’ll probably never get to. And part of that reason I want to do that is because of you and what you’ve been through. Your open discussion will be welcome and your contribution extremely relevant.

Cheers, Mate!

-Craig

RobinKaye
Posts: 93
Joined: Nov 2011

You mentioned Chicago so I just assumed. We have the same thing at our hospital but it always cracks me up that it suggests my husband get another colonoscopy in 2021..., it's supposed to be a resevoir for all of the records but it's been pretty lacking.

Your posts have been very helpful over the last few months...thank you.

Robin

k1
Posts: 220
Joined: Dec 2009

The system they use at UT Southwestern in Dallas for patient direct communication is called mychart. I am a patient there too and use it all the time. It is used at several major hospitals nationwide. You can read about it at mychart.com It's awesome.

K1

buckeye2
Posts: 428
Joined: Jul 2011

Well, it looks like things could be better, could be worse. I am very happy to hear that no additional treatment is needed at this time. Selfishly we all just need you to concentrate on our problems. You are the ultimate cheerleader for all of us. My goal is to have a beer with you someday. Lisa

jasminsaba
Posts: 157
Joined: Jul 2011

Hi Craig - I also live in DFW and actually graduated from UTSW ... was wondering, who was your liver surgeon?

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Robert Michael Goldstein, M.D., F.A.C.S.
Baylor Medical Center

Nice to know that you are in the area....:)

BTW: Goldstein was the surgeon who performed Mickey Mantle's liver transplant.

I met Mickey Mantle when I was 8 years old...I was living in Austin, TX and he had opened up a restaurant and was there for the grand opening. I was shy but finally got up and walked up to him...just in time as he was getting up to leave and the line was clear.

I looked him straight in the eye and told him my name and got a personalized autographs from "The Mick." Still one of my most treasured possessions...along with a personal letter from the late Tex Schramm...he wrote me a letter after I wrote the Dallas Cowboys organization - it was 23 pages long, LOL!

Tex told me he sent it to the practice field for all of the Cowboy players to read. He then wrote me a personal letter with his real signature. Apparently, my letter touched the big guy:)

-c

jasminsaba
Posts: 157
Joined: Jul 2011

I know Dr. Goldstein ... he was our second opinion and has operated on two friends. You most certainly were in very capable hands.

It's nice to have found another Dallasite on this forum. It's especially nice for me since I now have a go-to expert as far as resources are concerned :-)

All the best to you - J.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Lisa

We'd better 'hurry', darlin':)

-Craig

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

well, it sounds like you are in at least a holding pattern. I hope that your next set of news from the Dr. is all good news. You could use a break (I know, understatement of the year).
Hang tough!

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

What does your doctor want to do. Stable is good in the lung but sorry to hear about the other spot that has now popped up. Hopefully in the next scan it stays stable. You have been through a lot and just wish the news was a little better for you. You should always share what is going on with you on this board because we are family (even though it's cyber) and we have made it into each others lives. Take care, friend.

Kim

smokeyjoe
Posts: 1428
Joined: Feb 2011

I find it interesting how each radiologist reports on scans...my last scan the fellow listed all kinds of stuff not noted before on any of my scans, I had to look them up, found he was making notes of things that women have with multiple pregnancies....but it freaked me out with the wording I thought it was cancer related, then when I saw what it actually meant I was relieved, but no other rad. ever made note of such things in the past...at least this guy was thorough. Craig, hopefully these spots won't change and they'll just be scar tissue or such from previous procedures.

wolfen's picture
wolfen
Posts: 1325
Joined: Apr 2009

Thanks so much for the update. Although the news could be better, at least there were no large "surprise gifts". Now, I want that tiny liver one to go away. You and Ron have been through enough. And my next silly question is, "How did you get ground glass in your left lung?", or did I miss something.

Luv Ya,

Wolfen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

That's the way the report read - "ground glass."

That appears to be the way that the spot looks like...I've heard them described this way before...it's rather small @ 6mm...but it wasn't there the last scan.

The liver one does have me concerned...it is 'brand new.' I was feeling so good having recovering from the liver and not having any issues for 4-years...I thought I was home free in the liver...

I figured my battles would be in the left lung since the right one has been hurt so bad, not back in the liver.

I guess it's too early too tell - I'll just have to play this one out.

And still, I find all of very "unsettling" - even for me.

Luv back:)

-Craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

He wants to "watch and wait." We'll look at it again next cycle at the end of May.

You know Time and Patience is more than just a slogan with me - I actually live by it:)

The liver spot is very disconcerting, Kim - if I'm being honest with you, and you know I always have been. It's weighing heavy right now, but will come to pass. I don't care how many times you've had it, just the thought of it...

We are in each other's lives as you say - and I don't want it any other way - ever...I'm closing in on 3 years knowing you now...you're one of the "originals." That's a big comfort to me.

You know me....my feet will always be tappin'.

An old friend
-Craig

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I was here to see "The Chemo Wars...Whats the real story". And once again...as I read through your day in the life of a Lion, I think to myself...there is not a more befitting picture to represent you!

Love, plh4gail

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thank you, Gail...

When Chicky passed away, I 'retired' The Lion and thought that chapter in my life was closed...it was a special time for me...a story that I hope to talk about one day when the climate is right.

I then decided (reasons for yet another story to be told TBD) to resume that role and keep the lion alive. I do so love that picture as well...I want it on the cover of my "never to be published" book, LOL!

-The Lion

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

CA19-9 Test Results

12/03/2010 = 103
01/26/2011 = 133
11/30/2011 = 139
02/01/2012 = 160

Now that I'm thinking about it, there is a new spot on my liver...and the number has climbed steadily since the last test. I'm wondering if there is a correlation with my new spot on the liver and the steadily rising CA19-9 result?

Normal value range is...0-37....though I saw my place has the value at...0-55.

Either way, I'm triple the max average...alot for me to think about it over the next 4-months. This number was sky-high and off the charts...like in the 600's when I had liver met...dropped to the 300's....and then went into the 100's...I switched facilities and asked my onc to start including this.

May be something or not...if it's a tumor, it's already there...if not, well we will see.

Craig

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Craig,

Sorry to hear about the liver. Wait and see might be the best approach right now since it is still small. I understand the worry, BUT worrying is not good for us.
Try to visualize it gone gone gone. I believe that our brain is our strongest allie
And I pray everynight that you will find a publisher for the book.
Stay strong, your plate is full right now, looking after your ailing father, work and worrying about your self.
I wish for all of us who need it an aunty like Pete had,who leaves us some well needed money.
Hugs, Marjan

buckeye2
Posts: 428
Joined: Jul 2011

I wish I could do for you what you do for others, use words to ease anxiety. "Try not to worry" feels patronizing. "I'm praying for you" sounds like a cliche. I thought about cuss words but I try not to upset the "big guy" these days. So...I got nothing but we should schedule a date for that beer. You know how if you don't schedule it, it doesn't happen. Are you doing anything Feb. 15,2014? I plan on coming to Texas and bringing a 12 pack. I hope you like Miller Lite. Lisa

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