CSN Login
Members Online: 4

Is There Any More Room for “Some” Good News?

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

Well, I got through the MRI Wednesday…just barely…but I made it through…

 

This time it was for 30 minutes with no contrast required.  I explained everything to them about the problems I might have and we got started. 

 

They had the fan turned all the way up, but it still wouldn’t reach my face, just sort of blew up to my chest.  They were just going to scan the lumbar channel of my spine this time. 

 

What was interesting was how ‘hot’ it gets for you there inside the tube when they have to scan the spine.  Within minutes, my whole back was hot and I started getting uncomfortable quickly. 

 

We made it 2 cycles and she asked me how I was doing….and I asked her to pull me out, so I could get some air on my face and wipe the sweat off and then we could go again.

 

She was a very nice tech and did this for me…

 

She went the extra mile though…she could see how bad it was and she brought me two cool wash cloths and put one under my neck and the other one on my forehead and slid me back in for another cycle. 

 

When that cycle was over, I asked her to keep pulling me out each cycle, so I could cool out…..we ended up doing about 5-cycles.  On the very last cycle, she even went and got me ice cubes for the cloths to keep me cooled down.

 

When we exited that cycle, I had melted the ice cubes and was drenched with sweat from head to toe….but we did get through it. 

 

That’s about the best I’ll be able to do fully inserted like that….I’ve done brain scans when you’re head is inside and your body is out.

 

What she told me was that when doing the spine, it really gets hot.  I’m assuming from all the magnets and the friction that it creates or something like that…makes it generate a lot of heat pretty fast.  

 

Last night, as I went to bed, I sincerely prayed that my spine did not have cancer in it….but was willing to accept the outcome if it weren’t in my favor. 

 

I got my MRI report back…

 

From what I can ascertain, there are problems that need addressing; I’m not downplaying any of that, because there is work to do…..BUT……

 

It looks like I “Do Not” have metastatic cancer in the lumbar channel of my spine!!!

 

I’ve got huge pain that has been building in intensity the past seven-months…but, no indications of cancerous activity.  Whew!

 

I immediately thanked the Lord for his grace with true sincerity in sparing me this part of the journey:)

 

What I do have are a lot of degenerative changes (from radiation) that have been superimposed onto a congenital stenotic spinal canal.

 

 There is desiccation at L2, L3, L4, L5, and through S1.  There are diffuse disc bulges from L2-L5  and some narrowing of the Thecal Sac along with other fancy buzzwords. 

 

Bottom line is radiation damage from 2004 that has gotten progressively worse – combined with congenital spinal stenosis.    

 

That was interesting, because that is what got my dad last year that ended up putting him in and out of nursing homes and ICU and ER’s …only he was 82….and I’m just about to turn 52 in a couple of weeks.

 

Radiation apparently played its part in speeding up the clock and at some point later in life; I probably would have had to deal with it.  I’ve quipped about it being the gift that keeps on giving…and it truly does. 

 

I remember them telling me I would suffer should I happen to survive the cancer.  This is one of the problems that we encounter when we live longer than we were supposed to.  Eventually, everything that was sowed – gets reaped. 

 

I did some investigating on this condition….give me about 30-minutes of research time and I’ll have an answer for you:)

 

But, while it is risky, it appears that surgical intervention would be the only thing that could alleviate the pain enough…..

 

I’ll have to see what the doctors say about all of this….I meet with 3 of them next week to go over things now that the tests are done.

 

No cancer in the spine was huge though….had there been cancer…all bets were off…and they were just going to go the chemo route…no surgical intervention or anything like that would have been offered. 

 

So, hopefully, this puts me back into contention to fight lung and liver….waiting to hear what they want to do on lung still.

 

Currently, I am inoperable in the liver due to the hepatic dome location…but the thoughts of TACE were introduced by the surgical liver onc…we talk to him again next week to go over MRI and the liver. 

 

Anyway, I’m always trying to find the good in any situation…but, who ever thought bad news could feel like such a relief?    It’s amazing how we were able to see through all the clouds and find a blessing amidst the rubble. 

 

I know many of you are very concerned about me (including myself) and so I wanted to give you some “good news” to help alleviate your own worry.  We’ve still got a long way to go, but this was as promising as it has been the past few weeks and I wanted to share it with you.   

 

The spine is the highway to the brain….and so this is a rest stop that I was glad to just drive right on by:)

 

Thank you each and everyone for all of your expressions via the forum or PMs…

 

I could sense and see the collective shrugging of shoulders around the room as folks were thinking to themselves…”this time he’s done for sure.”

 

I saw the lights go out in my wife’s eyes too…and I felt it in some of your words too…I could literally feel the energy drain out of you…I could hear the sound of acceptance and resignation in your voices.  

 

After all, I’m still the Seer of Seers – Prognosticator of Prognosticators, LOL!

 

It’s ok…it’s a normal human reaction for the people that we care about…letdowns always change the tone with which we deliver our expressions…

 

To be perfectly honest with you, I had lost hope too…real hope anyway…

 

So, this news was an unexpected relief to me and my wife…and I hope for you that are watching as well!  My wife’s attitude immediately changed when I told her the news….”Oh, we can beat this now”…”don’t give up, you can still do it.”

 

:)

 

It was like watching a sail go taut after turning into the wind when it catches the ocean breeze…

 

She had looked pretty forlorn since I told her the news.  And you know, there is something about the spine that makes you very queasy and unsteady…because, even for the unversed, you can “know” something without really knowing….”know” what I mean?

 

You don’t have to be a cancer expert to understand some realities…

 

And even for those of us who know enough to really know…the knowing carries with it a certain fear of future events to come that seems unshakeable.  And that weighs heavy as you try and superimpose an image for those you want to protect - that differs somewhat from you’re truly feeling. 

 

Anyway, we’re still in contention (plans still being formulated next week)…who knows, I might surprise you yet again…and you’ll end up stuck with me for a little while longer:)

 

How would that be?

 

LOL!

 

-Craig

Lovekitties's picture
Lovekitties
Posts: 2823
Joined: Jan 2010

That gust of wind you feel about you is the collective sigh of relief from all here that there doesn't appear to be any cancer in the spine!

I am so glad that you have one less thing to worry about,and yes, you can now go forward and beat the rest of it...again.

Hugs and love,

Marie who loves kitties

lp1964's picture
lp1964
Posts: 736
Joined: Jun 2013

The human mind plays funny games with itself. (Wooddy Allen calls it intellectual masturbation). In your case you expected the worst, you got less than the worst and you take it. And you should. Everything in our world is relative to something. We are very happy for you. You still have a high mountain to climb, but hopefully not as high as we all thought.

If I may give you a recommendation for your pain in your back, since I constantly have that problem too. Ice reduces the inflammation, the swelling, the pressure on the nerve endings and so the pain. I keep a bottle of cheap vodka in the freazer and when I feel the pain coming on I put it along side the spine and lean against my arm chair or the backboard of my bed for 45 minutes. The cold has to penetrate deep so it needs time. If you want try it. It works great for me.

Otherwise keep on with the follow ups and let us know how it goes.

Wish you and your wife wonderful days,

Laz

 

LindaK.
Posts: 244
Joined: Apr 2013

You could always resort to drinking the vodka!  ha ha

lp1964's picture
lp1964
Posts: 736
Joined: Jun 2013

...whatever lol.  I don't drink at all, but alcohol won't frieze and the bottle lies so perfectly alongside the spine. ;)

Laz

LindaK.
Posts: 244
Joined: Apr 2013

Oh my, what a wonderful way to end a grueling work week!! I love hearing good news like this.  This will be news for all of us to celebrate with you this weekend.  I'm going home tonight with champagne to toast my husband getting his pump off for hopefully the last time.  We'll clink to your good news too.  Sorry you had such a hard time in the tube.  It's over and you made it!

Oh happy day!!

Linda

jen2012
Posts: 1129
Joined: Aug 2012

Great news Craig and so happy to hear the relief in your voice...words! For what its worth I didn't lose hope. I see you fighting thru this once again.

Hey I have a bday coming up in a couple of weeks too.

Enjoy your weekend!

wawaju04976's picture
wawaju04976
Posts: 318
Joined: Dec 2012

Terrific news!

ketziah35
Posts: 1120
Joined: Jun 2010

Praise The Lord! I have been lurking but wanted to sign on to tell you how happy i am for you.

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

It was nice to hear from you....I appreciate what you said:)

PTL all the way around here too....my first thank you went straight there:)

herdizziness's picture
herdizziness
Posts: 3328
Joined: Apr 2010

For some good news.  I have a hard time getting on this site so sorry I haven't been around much.

I'm so thankful it isn't in the spine!  The rest of the stuff you'll take care of, one at a time, until that mountain has been turned into a mole hill.

I can stop researching the spine stuff now.  My sister has had them in her spine for over a year now and they've been shrinking thank goodness.  They used hormones for her for the first 4 months (hers is me static from breast cancer). She's now on chemo and doing well.  So see everything doesn't mean it's going to be worst case scenerio.  I was looking it up for you so glad I can stop now.

love and hugs to you my dear friend, a break was needed for you and you got one, now onto the rest.

 

Winter Marie

KathiM's picture
KathiM
Posts: 7857
Joined: Aug 2005

And, WOW!

 

"It was like watching a sail go taut after turning into the wind when it catches the ocean breeze…"

 

Speaks volumns for all of us caregivers, thank you my gentleman cowboy!!!

 

BIG hugs, to you BOTH.....Kathi

Chelsea71
Posts: 1154
Joined: Sep 2012

Wonderful news. So happy.

tootsie1's picture
tootsie1
Posts: 4996
Joined: Feb 2008

Oh, you've had me scared. Really, truly scared for you. SO glad to hear this bit of good news!

You are such a wonderful person, and I adore you (and Kim!), and I'm so glad to have to contend with you a bit longer!

 

*hugs*

Gail

Deena11
Posts: 193
Joined: Nov 2012

So nice to hear good news.  I'm so happy for you!!!

Deena

Chelsea71
Posts: 1154
Joined: Sep 2012

Craig, just curious. Do you feel better physically now that you know the spine is okay? Do you feel like maybe you can handle Disney?

wolfen's picture
wolfen
Posts: 1125
Joined: Apr 2009

Just so relieved for you regarding spinal mets. I can see Hope once again peeking around the corner. We always make room for "good news" around here.

Luv Ya,

Wolfen

jen2012
Posts: 1129
Joined: Aug 2012

You need to try to get to Disney with LMS! Seriously even if you need a scooter to get around and put off paying some med bills. There is nothing like seeing Disney through a child's eyes. I guarantee you wont regret it!

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

Well, the spine still hurts pretty good...I really noticed it last year about this time (we were in the middle of dad's hoarder clean-out).  All of that lifting and bending and stooping last year really didn't help.....the last six-months I've griped to Kim how the pain would drive me up in the mornings (weekends) early, because it was just too painful.

I was still motoring pretty good and had just gotten so used to living with the pain, because I knew it was from the radiation and it was degenerative and expected to get worse etc.

One night last year, we had wrapped up at dad's about midnight and found ourselves at Walmart (only place open) and I got caught in an aisle...and it felt like the next step I tried to take was going to put me in a wheelchair....no joke.  It was scary and I couldn't figure how I was going to get to the car.

It all makes sense now...

The spine cancer was a real scare...and I'm so glad that we don't have to worry about that....I do meet with the doctor in another hour or so and hopefully he will confirm what I had read.

What has really made this worse, was the start of the lung pain which has gotten worse the past six-weeks....we've been 4 weeks testing and seeing doctors and still don't have the plan yet, but hope to this week. Breathing can become labored quickly...and when you draw in for breath, it hurts pretty good.  I feel the liver tweaking a little too, some little pains here and there, but not constant. 

I guess we'll just have to see on what shape I'd be in.  It's going to depend on what they do to me - and where I'm at as the window approached. 

Tramadol is not going to be the answer if the lung issue keeps worsening....last time the tumor just grew and grew until it began to close off my breathing and I was bent over in pain.  But even pain patches would not help enough to go if the pain got that bad.

We'll just have to see....as long as I could do some things and not detract from the experience for everyone else, I'll keep my options open.  It's their trip and I want them to have a good time with no worries.  We were just trying to see if we share it with them in any kind of meaningful way for a few days or whatever.

I'm going to use this trip as inspiration for my fight...as the new carrot at the end of my string....

Thanks, Chels:)

Disney looks like such a long way off right now...I'm only going to look at it if I'm in a position not to impede the others with my presence. 

jen2012
Posts: 1129
Joined: Aug 2012

My mom came to Disney with us a couple of times and she cant get around very well. They have so many cool and fun restaurants that you can skip the expense of the parks and hang out at the pool all day and meet up for dinner. I'm going to keep pestering you on this....really want you to go! My hope is my husband is able to go in about 2 yrs so we can bring the little guy.

MaryCarol5's picture
MaryCarol5
Posts: 95
Joined: May 2013

Yay!!!  That is great news! :) Prayers for more-

MC

danker
Posts: 678
Joined: Apr 2012

I hope the disk bulges in the lumbar vertibrae don't cause any pain in your legs.  Good Luck young man!!!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Cool !!!!

LivinginNH's picture
LivinginNH
Posts: 1215
Joined: Apr 2010

 

Thank goodness it's not in the spine, that was a real scare.  I just hope that the doctors can do something about the back pain so you can get around a little better.  I also hope that you can reduce your workload so that you don't have to put with the pain, as well as the bad co-workers.  :(

Take care, love,

Cyn

Annabelle41415's picture
Annabelle41415
Posts: 4106
Joined: Feb 2009

That is very good news about the spine.  I'm thinking that this is something that you can beat again because you caught it early.  You are a fighter and the lion still roars in you.  It might be a little weak right now, but it will come back with a sound that everyone will hear.  Watch out the lion is coming back Smile

 

Kim

janderson1964
Posts: 1342
Joined: Oct 2011

I am so truly happy that is one less thing you have to deal with as far as cancer goes. Hopefully your team can come up with a plan to avoid systemic chemo.

Marianne313
Posts: 125
Joined: Mar 2011

I'm very happy for you Craig.....Laughing

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

Met with liver surgeon/oncologist today for meeting 1 of 3 with various docs this week....

He did confirm NO mets to the spine, so I read the report right:)

But, the talk is systemic chemo because of the multiple locations of course...I tried to bang the local route out of him, but from an "oncological" standpoint, I'm told it doesn't make much sense.

Part of that I buy....if you do a procedure and more mets sprout, in essence, we shoot another golden bullet we may need for the future....sitting at 9-years, we can't just open fire at will anymore....I was afraid of this.

The goal would be no new growth and that would be considered a victory.  From there, the plan might change to a localized attack, where we go for the liver, perhaps with TACE or to lung with SBRT or something.  Lots of scar tissue from two lung surgeries, but Dr. D. concurs that the pain I'm having in my lung is metastatic cancer related. 

From what I've described with the pain....and the lung pain is what is driving me crazy and what will need to be addressed at some point, or I'll be progressing to ever increasing pain meds. 

I asked for something other than Hydrococone, Darvocet, or Tramadol....and surprisingly, this new onc wrote me a script for low dose Dilaudid...so we'll see how that goes.  I asked about a Fentanyl patch...and he said a low dose of that might come later. 

They want to take out my spleen now to raise my platelet count...this is a setup for Oxy and I have to meet with the regular onc about the chemo plan he has in mind.  I'm not going to be happy with permanent neuropathy in my feet and hands...already have some but liveable....to get further impaired and knowing that Oxy is not the answer would make me feel violated.

Even if it helped in the short term.....

I'd lean back towards Irinotecan even though that nearly killed me...but I'll have to make that decision after the consult.

I don't know, Jeff.....

I might put something together in a post....there was some good stuff...and it looks like life-changing decisions are now going to be made as curative is gone now....and no longer a part of my vocabulary. 

I'm going to have to lean on you and Phil now to make it farther than I could....

If the fight doesn't go favorably and I'm feeling bad from the treatments with no real response, I might have to start learning how to let go. 

I dread the chemical fight....I didn't want it....

We talked about the Hallwang approach and he said folks do good there for a couple of years and then their cancer comes back even harder than it was before. 

I'll need another post......

I'll exit with him telling me that I'm in the 1% bracket that lives this long with liver and pulmonary involvement....he said it is truly amazing that I've made it this far battling actively for these many years.  

I hope he is part of my care plan...I like this new guy....he gives it to me straight...and that's important, because there are many decisions that I need to make now, based on what he told me. 

And that's important....

One of the reasons, I lay it out the way I do here.....we gotta' know, because a bevy of big decisions come with the knowing. 

Anyway, out of the frying pan....and into the fire now....

I won't say anymore right now.....

johnnybegood's picture
johnnybegood
Posts: 1120
Joined: Oct 2008

i have been quiet about your situation for sometime now ,we had a very long church service yesterday and well all i can say on here it was very moving.speaking from my point of view i did choose to have my spleen out to get my platelets up because if i did not go that route i saw the battle in no more fight mode so i said lets go for it.back in 2011 before my liver resection my surgen wanted me to try oxy again to shrink the spots on my  liver for resection.i had a different onc in 2009 and she gave me too much oxy despite me telling her all my symptoms she finally stopped me at 10 tx but now i have severe neuropathy in hands and feet.back to 2011 i trust my surgen so much that i said i would try the oxy again but was scared to death.i did 1 tx and imediatly felt the coldness hurt cant swallow hurt and most of all the pain in my fingers felt like someone had hit all my fingers with a hammer.told new chemo onc about my first tx back on the oxy and asked him if you get neuropathy to bad will it cause you to not be able to walk and he said yes.so he stopped the oxy and we went for irritatecan which for me was a better cocktail but i know you have had a very hard time with this one.since i am inoperable my poison for now is xeloda+avastin and so far it is keeping the spots from growing.is this a road that you think you might be able to travel? i know systemic chemo scares me as it does you and frankly as much as i have grown closer to the Lord i dont know if i could even go that route again.well i better get off here dont want to start writing like you.take care my friend and be brave like the lion you are....Godbless....johnnybegood

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

It's difficult to be twisting in the wind like this...one way this...the other way that...

I guess I just have to start being more realistic now...this onc wants to "reset" my clock to gain more time...this one really seems to be interested in QOL. 

I'm just gonna' meet with the rest of the docs this week....listen to their recommendations...and then think about the cold hard truth I'm being presented with....and try and make the best decisions going forward.

Maybe it will become clearer then...

The hopes are that the systemic would lead to localized treatments, which would gain me a foothold...I'll probably be willing to do some of that....but just don't know about the Oxy yet. 

I want extension....but not at all costs...

In the end, he said it would catch me at some point....I guess it's always hard to hear that news...but, he's keepin' it real.

We'll just have to engage first and then see...

Right now, I just want this pain to get under control....it's hard to concentrate and think sometimes...

We'll start with pain medication...and hopefully they can apply a palliative procedure at some point to ease the condition if they can't do anything else with it.

Thanks for writing in today, J:)

lp1964's picture
lp1964
Posts: 736
Joined: Jun 2013

Don't forget that your pain, even though feels like it is in the long area, it can be referred pain from your spine, because if a nerve is pinched wherever it goes, that's where you are gonna feel the pain not at the source.

we all wish you the best outcome,

Laz

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

It's in several spots in my lower back....we see the bulges and dessications at several spots...and a narrowing of the spine. MRI spells it out nice and clear for me....and doctor concurs.

However, the pain in my back is NOTHING, compared to the problems with my pain in the lungs, which is beginning to really take off....there is metastatic cancer there, but can't operate at this time.....chemo's coming....and we'll see if that shrinks or helps until they can look at this. 

Breathing can become labored quickly.....can become shallow because to breathe in too deep, hurts like a knife stab and twisting.  Pain can make you stop in your tracks....it's still early but it has gotten worse in the past month just before the re-dx....

I've tried ice packs before....yeah, they reduce swelling etc.  But, it really did not help me much then....and it certainly won't help with the lung problem....the spine I can live with....it's in a degenerative state anyway.

The issue right now is pain control until we can get something started....still meeting with doctors all week......

Anyway, we'll see how it goes....thx.

The concensus is that the cancer will get me long before we can do anything on the back at all. 

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

and let you know I've been thinking about you a lot. So glad it's not in your spine. And it's still a tough situation. Sigh. And you've written well about how you're thinking you're way around the options, how you are dealing, and then "we'll see how it goes..." I guess that's all that we can ever do eh? Your words continue to be helpful, to me, to others. I hope the pain management works soon. That will help a lot. Hugs to you. 

 

Love, Leslie

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Craig,

I was really sad to hear about your latest news, arg!   I've had recent reccurrance, mets in the liver and abdomen wall. I'm back on Oxy, 5fu, and certuximab, I'm realizing some neuropathy, but it's been manageable with only some tingling in my right hand, nauseau, and unrelentless gas, we're taking major PSI's!!!   I had a scan several weeks ago and the Oxy is working, my mets are dramatically improved.  The plan is to take 8 doses of Oxy and then switch over to something else and hope and pray that it keeps the remaining cancer in check.  For the record, when my Onc mentioned chemo again, I wasn't sure i wanted to go down that road again, I'm well over 50 doses and I'm tired of it all!  However, it took me all of 10 minutes to realize I had no choice but to do chemo again, and so far it's proven to be a life extender.  I hope and pray that if you do the Oxy you get some great results.

Whether you know it or not, you're blazing a trail for others to follow.  Hang in there Craig...

Best regards,

Buster

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

Craig,

I was really sad to hear about your latest news, arg!   I've had recent reccurrance, mets in the liver and abdomen wall. I'm back on Oxy, 5fu, and certuximab, I'm realizing some neuropathy, but it's been manageable with only some tingling in my right hand, nauseau, and unrelentless gas, we're taking major PSI's!!!   I had a scan several weeks ago and the Oxy is working, my mets are dramatically improved.  The plan is to take 8 doses of Oxy and then switch over to something else and hope and pray that it keeps the remaining cancer in check.  For the record, when my Onc mentioned chemo again, I wasn't sure i wanted to go down that road again, I'm well over 50 doses and I'm tired of it all!  However, it took me all of 10 minutes to realize I had no choice but to do chemo again, and so far it's proven to be a life extender.  I hope and pray that if you do the Oxy you get some great results.

Whether you know it or not, you're blazing a trail for others to follow.  Hang in there Craig...

Best regards,

Buster

Goldie1's picture
Goldie1
Posts: 245
Joined: Sep 2011

to hear this GREAT news!  Keep that "sail" flying high!

Ellen

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Great news!  No cancer in the spine is a huge one!

we love being stuck with you!  I love reading your posts.

 

alex

hippiechicks
Posts: 302
Joined: Sep 2012

So happy to hear your good news!!! Now you go and finish this fight once and for all! Wink

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

Craig - Wonderful news indeed!  So happy for you, sad that you have spine problems, but at least no cancer.  I hope the rest of your tests contain rays of sunshine in them.  Good luck and keep us posted.  Traci

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Not happy about a reoccurence but this is good news indeed.

I have been lurking but have been so busy with work and my kindle not working I am able to catch

a moment on my daughter's MAC

I am always thinking of you and hope your other concerns can gain attack quickly!

Have scan coming up and then MRI of brain. I feel so good accept for numbness in feet and I tend to get

uncomfortable where incision sites are after sitting/working/running around during the day.

Still biking and trying to do yoga when I can.

Thank you for sharing Craig and I will be watching you.

I had my last Sir spheres treatment a week and a half ago. Hoping it was effective.

Also hope they will consider this a first-line treatment. It is a walk in the park compared to chemo and other

surguries......

I know I am a big contender in the cancer boxing ring having a brain tumor but just trying to live as best I can.....

HUGS from he Chicago suburbs Craig!

Barb

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

You just seem to be doing so great.....I'm so impressed with you:)

You're beating the odds every day...I'm in awe:)

janderson1964
Posts: 1342
Joined: Oct 2011

Anything new to report. Are you and your teams of docs starting to formulate a good plan of attack.I think about you and your situation every day.

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

I said, why don't we determine where the cancer is present first? 

My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

I know this...but it was great to hear a medical man concur....he knows....

The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

I won't be an inspiration then.....

Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

And then I proceed to tell 'em:)

Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

Much more of course, Jeff.....just the highlights...

So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

It really does make you wonder where their true interests lay...

 

 

annalexandria's picture
annalexandria
Posts: 2014
Joined: Oct 2011

i've really missed a lot being gone.  I'm so sorry things are so dang complicated for you, Craig.  Why can't cancer ever be simple?  I'm not happy to hear that your medical team isn't thinking outside of the box for you more.  You must be so frustrated that all your docs can jump on is more chemo.  It has its place, but I just can't believe that there aren't some other options that are worth trying.  Like you say, what have you got to lose?  Well...I'm comforted by the fact that you don't have bone involvement (gotta protect that excellent brain of yours), and I know that if anyone can push these doctors to get in in gear, and come up with a better tx plan, it's the Lion.

Lots o' love coming your way, bud~AA

janderson1964
Posts: 1342
Joined: Oct 2011

Wow Craig. What an ordeal but I love your resolve and fight. You are still an inspiration to me. I am glad that the lion is on the prowl. I know that you have always stood by your team at your NCI hospital. I switched all of my care to an NCI hospital 2 years ago mainly since that is where I always had surgery and my local oncologist pissed me off. I thought the care and communication would be much better. Man was I wrong. The experience has been very dissapointing to say the least.

Keep fighting brother and nothing wrong with being the aggressor.

LivinginNH's picture
LivinginNH
Posts: 1215
Joined: Apr 2010

 

My dear Craig,

Oh how I can feel your frustration and disappointment with your doctors.  That's exactly how Rick and I felt most of the time.  I learned early on that unless the surgeon was about to cut into him and get a paycheck, they didn't have much use for Rick as a human being. They'd be all smiles and oh so possitive during the consult, but if something popped up afterwards, they'd just push us off to the oncologist "the chemo doc".  So after having gone through this entire process as a watchful caregiver, it often appeared to me that there isn't much skill required to be an oncologist, since all they do is hand out the chemo flavor of the day.  So when Rick finished Folfox and it didn't work, they simply switched him to Folfuri w/Avastin and after that failed, his oncologist just came in and said, "I'm sorry, there's nothing left I can do for you, take care.".  And that was that.  As you know, Rick fought hard to the end, but it came a time that he just didn't to say "uncle".  He never did come out and say it exactly, but I told him that his body just couldn't take it anymore.  Doctor's just don't have all the answers and cancer mystifies them just as much as it does us.  So my friend, that's now where you're at, the crossroads.

Love always,

Cynthia

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

I'll be interested to see what my Radiation Onc has to say.....if we can biop the liver and the lungs....I am scheduled for those procedures now.

I'll also be interested in the report from the MRI I did late yesterday afternoon....

This guy wants to use my old cyberknife records.....the plan, the delivery, and the results....to see which areas were affected.....and how closely do they correlate with this new area of activity. 

Both the liver and lung involvement are very near my old stomping grounds from fights before.....after we radiate one area....we cannot radiate the same area.  So, the question will be trying to determine if there is any area in their to work - without stepping on something already done in the past. 

I'll probably die in the liver this time......I don't have the options that the vast majority of patients have.....you guys have a healthy enough cancerous liver to RESECT. 

I don't...

Mine is full of NASH and will probably never be resectable...and that's what will get me. One of the other doctors on the team did tell me that Cancer was going to catch me at some point. 

I don't want a prolonged fight in the liver....I can't win there.....not with just chemo....shrinking a little here....growing some more there. 

If chemo is my only weapon....it's already all over but the cryin'......again I'm a 9-year guy.....not a first timer, where options are a-plenty. 

I want to know about lungs too....hoping for some radiation there, surgery looks out there too right now.

Well, I've got more work to do and more facts to gather....

It's all really convoluted to even post....this is the best I can come up with.  Still in pain alot but knocking the edge off or else I couldn't even be writing.

Gotta be cancer in the lung making me hurt this bad.....scar tissue and such rubbing on nerves hurts, but from the start this feels differently.

The only bright spot out of the thing is that the rad onc is going to try and come up with a plan besides just chemo.....he sees something and says I'm valid enough and tough enough as a patient for him to try.....and not just resign himself to chemo.

I could clearly see that assessment had him pissed off.....but he coulnd't harangue his colleagues.....but I know him...and I read him...loud and clear. 

He's the only one of four doctors, who is willing to step out of his comfort zone.....even if he does end up hurting or killing me. My liver is still functional....but he feels a pop or two and it could begin going the other way.  The liver is a very tenuous situation for me.

What else is there to say......

If there is any info worthy of posting later, I'll look at that. 

Thanks again!

 

 

jen2012
Posts: 1129
Joined: Aug 2012

I don't have any words... I continue to pray for you and think positive thoughts.

wolfen's picture
wolfen
Posts: 1125
Joined: Apr 2009

That's how I see that you are being treated. They are "scared" of your case??? What a disgusting thing to say to you! Can you tell I'm mad? Of course, you know my feelings on the majority of the medical profession.

I'm glad there is a "lone wolf" among them who is still willing to try without being "scared". Don't let them just sweep you under the carpet. I know you won't. I can tell by your attitude.

I know you've been with this bunch for a while, but if they're no longer fighting with you and for you, well..................

Take care and we'll be waiting for an update.

"SCARED, MY A$$". How do they think you feel?

Luv,

"Mama"

Chelsea71
Posts: 1154
Joined: Sep 2012

Thanks for the update.  Your situation sounds quite similar to Steve's.  His lungs are not yet causing symptoms but his liver mets are making themselves known.  I think it could all go really south, really fast.  I am still in shock over how quickly it can all turn so bad.  Steve had a really impressive team of surgeons who were very interested in doing surgery.  As soon as they discovered lung mets (multiple locations) they said see you later.  Referred him to a new onc.  You will never guess what this guy recommended.  Chemo.  Surprise surprise.  He has had only two sessions but I suspect, based on his symptoms, that it is not working.  I hope you are able to work out something better for yourself.  Steve has very smart cancer cells.  They've caught on to the chemo.  

 

I think about you every day.  I feel very hopeful about your situation.  Stay strong, don't give up.

 

Chels

LindaK.
Posts: 244
Joined: Apr 2013

This news makes me so sad, I don't even know what to say.  It is all so foreign to me, I am one of the "follow blindly" first timers as a caregiver.

I admire your knowledge and diligence, you know what is best for you deep down.  Keep giving those docs hell, don't let them be "scared" that's a cop out.

Linda

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network