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Self Advocacy and Hope

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Hi all,

The last couple of weeks have been a flurry! Lots of doctor appts over the holidays but a renewed spirit of hope. Here's what I've been up to:

8/07: Stage 3 cc, surgery/colostomy/Folfox/colostomy reversal/bad PET
8/08: stage 4 w/mets to the liver

In September 2008 I met with a new Medical Oncologist at a major cancer clinic for a second opinion. He in a gastro. onc that specializes in mets to the liver. Every liver surgeon told me I was not a candidate for resection as I have 10+ tumors spread all across both lobes. Onc recommended Folfiri w/Erbitux to attempt to get the tumors under control and make my liver resectable. 5 rounds of chemo and the CT at Thanksgiving showed a stable disease meaning: no change at all. Good news/Bad news = no news.

Onc sent me to meet the top liver surgeon at the cancer clinic and I met with him the week before Christmas. He had spent hours reviewing my medical records (I know this because prior to the appt his office called and asked for very specific records from specific facilities and dates). He examined me and got a history, then stated that I am not really a candidate for surgery, rfa, or radiation. Maybe more chemo? I could feel my husband sitting beside me, tense...silent and I couldn't bear it. I wanted to protect him from all of this. It was all I could do not to cry. I looked the surgeon in the eye and calmly said, "I'm 44 yrs old and I'm not going to die from cancer. I'm here to get this fixed so what is your plan to do that?" Then I sat quietly and looked at him until he started to come up with solutions! (sitting quietly is NOT in my nature, btw!) He was coming up with 'alternative' types of surgery that weren't very encouraging. I looked at this renowned surgeon that has worked with my onc for 30 yrs and said that my onc promised me NED and I was here now for him to make good on his collegues promise! Everyone in the room laughed (including me) but that surgeon started to back track. He told me that there is a possibility to do the resection in 2 stages with time in between for the lobe to regenerate before we go in and hack at the other lobe but that most surgeons would make a case to not operate. He promised to study my films and calculate the possibility of that.

The next week (2 days before Christmas)I had an appt with the radio. onc. who also stated I'm not really a great candidate (based on my scans) for radiation or surgery. By the end of the appt and meeting me, he had some ideas. He thought a combo of surgery and stereo static radiation with possible RFA. He said he'd meet with the rest of my team and see what they could come up with.

Wednesday January 7th at 9pm my phone rang. It was the liver surgeon calling, personally, to tell me that all 3 of my onc (med., rad., and him - surgical) had met with the tumor board that day. The reccomendation is: 2 part liver resection (1-2 months apart waiting for regeneration), RFA during the first resection, Portal Veil Embolizism 3 days postop, 5FU chemo. Oh, and am I available on Tuesday for the surgery....6 days later! Ummmm....YA!

The very next day (yesterday) I met with my medical onc. He said that I was NOT a candidate for anything but chemo before they met me, but he knew I'd win them over. That it was my attitude, my unwillingness to quit/give up, my willingness to ask the tough questions and follow through with treatment even when it wasn't going the way I wanted...THAT is why I finally made it to surgery! I wrote this part down so I'd remember it exactly: "Patients don't understand that they have to present themselves well and 'sell' themselves to their doctors. Even the most talented doctor knows that the patient's attitude, positivity and willingness to do whatever it takes plays an important role in prognosis. Without that, we can't really help." He told me to pretend I'm happy and positive whenever I can, even if I don't feel like it (I already do that) because, as we here already know, 'fake it til you make it' really works! He TOLD me that he believes that I will have the cure I've been seeking. He also told me that one member of the tumor board (another liver surgeon) wanted to just leave me alone to chemo - "enough is enough" - and all of MY onc fought for me. They pushed because they believe in my cure.

So, on Tuesday January 13th I'll have my resection (well, I like to call it a liver tuck....doesn't that sound like more fun than a resection?) and RFA. Friday will be the Portal Vein Emboliziation and home Sunday or Monday. A month off and then chemo until the next resection, date TBA.

For those that made it this far down the page, God Bless You! LOL Please pray for me and a positive outcome. I now have HOPE in places where there was none. I was the only one that believed I'd get to a cure when this started and that was enough. Now I have a whole team believing right along with me! Fight on, stay strong, cry when you need to, smile whenever you can, laugh every. single. day.

Kimby

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

You go girl! We've got your back. You are strong and you deserve this chance.Our prayers are all over you.

Vicki

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Praying for stength and guidance for all involved! It is awesome to hear that your attitude had EVERYTHING to do with turning your team around! I suppose it would do nothing for a team to work their damndest only for the patient to believe it wasn't going to work and then become a self-fulfilling prophecy!
mary

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

Reading your post really makes me proud of you for being your own cheerleader and advocate. You're in my prayers for a speedy recovery and ultimate cure! Cheers to you!

mom_2_3
Posts: 964
Joined: Nov 2008

Persistence will pay off for you in a big way!

Can I ask you a quick question, though? Were you having CT scans all through that period between your original diagnosis and liver recurrence? If you were scanned every 3 months did you have 10 mets grow in that period of time?

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I had a CT scan right before I started Folfox and then a PET scan 3 mos post chemo. That was when they found the mets. Yes, they did develop during that time, so Folfox will never be a treatment for me again! My tumor had ruptured the wall of the colon so I believe that released those little cancer buggars into my system, and ultimately led to my progression.

Kimby

mom_2_3
Posts: 964
Joined: Nov 2008

How long did you have FOLFOX for? I started at Stage 4 so I'm different as they found my liver tumors (4) at diagnosis so I am hoping that after my scan in 2 weeks they say I can go into surgery.

I think that you posted on another board something about your oncologist saying that people that beat this are stubborn and determined, right? Well your persistence is paying off!! Best wishes for your upcoming surgery!!! I will keep you in my prayers!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Awwwright, Kimby!!! Now THAT'S the attitude more people with Cancer need to see. Yes, doctors/surgeons/specialists are great technicians and can do some pretty darn impressive things in our cure... but the most important is attitude, attitude and attitude! Without the attitude and belief that you are going to beat this thing, no amount of surgery is going to work... but if you believe 100% you can beat this monster and you don't give up on that belief... then miracles happen every day!! You are going to be a poster child for a Miracle!! :)

You go, girl!! I know you are going to make it :) :)

Hugggggs,

Cheryl

Faith4Cure
Posts: 405
Joined: Mar 2007

Your story is so inspiring. Way to go!!!! Keep on fighting---I just know you will make it!
Faith

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Kimby,

Somehow this doesn't surprise me. You evoke that positive attitude and spirit all over this board. In person I am sure you knock 'em dead!

I am right there with ya on the advocacy gig. I wish more patients had the tools to fight for themselves and feel more empowered. It can make the difference between life and death.

Blaze the trail baby!

peace, emily

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Kimby - You're an inspiration! I was dx stage iv (met to ovaries 1 node positive) in June 07 with surgery and FOLFOX (6 mon) I was cancer free. Now it's back (2 mets in mesenteric fat) and my MD just wants to do chemo like that's all I can do. So I'm going oustside my HMO for a second opinion. You've given me the hope that someone will do more for me than my damn MD, or should I say x-MD.

Best of luck with the surgery and everthing after. You will find the cure you're looking for. Traci

amcp
Posts: 251
Joined: Jan 2009

Kimby

I am so excited for you. I know a positive attitude and faith is so very important in a cure. My husband was given the no hope story by his medical oncologist and was sent to Vanderbilt for a Phase I clinical trial. Still not much hope for us. But on Wed of this week the Gastro Onc from Vanderbilt called and said her team had been going over and over all my husbands scans and felt that he was a candidate for liver surgery. My husband had been told by our med onc that he was not a candidate for liver surgery due to the liver being too involved. We now have an appt with the surgeon on the 13th, same day as your surgery. We are so excited as I know you must be. Keep on fighting. God just gives us today and with faith and prayer and positive attitude we can overcome. Keep us updated. You will be in our prayers. I believe everything will be great for you. Never give up. May God continue to bless you and heal you.

Anna

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Kimby good for you!!! You're right, it's in our attitude!

It just irritates me to pieces though that we have to fight for our treatment! We're the patients, we're the ones going through this, we're the ones who should be able to make the decisions on our healthcare/treatment and if our lives are at stake like they are, we shouldn't have to have another human being say yes or no, you're not a candidate. It shouldn't be their decision but ours! Miracles happen all the time, all the time, and if a human being is saying no, then that human being is responsible for not giving God the opportunity to work those miracles nor the patient the opportunity to fight for their life! That's way too much power for a human in comparison to the power of God!!

I know there's other factors that come into play such as possible recovery and insurance coverage and all the other "stuff" but all cancer patients (I refuse to say victims) should have the right to choose whether or not they WANT the treatment. To choose the possibility of life, slim chances or not!

Ok, getting off my soap box now. As you can tell, I don't take no either! lol

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

That's wonderful! I wish I could have seen the faces of all the people in that room. You rock!

*hugs*
Gail

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