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4theloveofjake
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Joined: 04 Feb 2009
Posts: 2093
Location: “The question isn’t who is going to let me; it’s who is going to stop me.” ~ Ayn Rand
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 Posted: Wed May 26, 2010 1:54 am Post subject: NCMtnGirl |
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Does anyone know what happened to her ? Haven't seen her post in a very long time...
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Great Spirit, help me never to judge another until I have walked in his moccasins.- Sioux Prayer
“Do your thinking at night, and your feeling during the day.” |
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Pedestal*Pony
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Joined: 31 Jan 2009
Posts: 1009
Location: Fountain Inn, South Carolina
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| Posted: Mon May 31, 2010 6:43 pm Post subject: |
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I know me either.
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Proud Charter Member of the "Bad Apple Society"!! YEA!
Horses~ Only God could create something so powerful and still remain so gentle, to have such a free heart and soul, to be a loving companion, to be a friend ♥ |
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becky b
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Joined: 03 Feb 2009
Posts: 735
Location: Gastonia, North Carolina
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| Posted: Tue Jun 01, 2010 4:09 am Post subject: |
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| I sent her an email so hopefully we will hear something back from her. Hope everything is ok with her and her family. |
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4theloveofjake
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Joined: 04 Feb 2009
Posts: 2093
Location: “The question isn’t who is going to let me; it’s who is going to stop me.” ~ Ayn Rand
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| Posted: Tue Jun 01, 2010 10:36 am Post subject: |
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Thanks Becky !
_________________
Great Spirit, help me never to judge another until I have walked in his moccasins.- Sioux Prayer
“Do your thinking at night, and your feeling during the day.” |
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thelmanelle
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Joined: 20 Sep 2009
Posts: 3253
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| Posted: Tue Jun 01, 2010 11:40 am Post subject: |
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| Her and Scott. He has disappeared, too. |
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NCMtnGirl
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Joined: 01 Feb 2009
Posts: 622
Location: High Country, North Carolina
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| Posted: Thu Jun 03, 2010 5:56 am Post subject: Hey Ya'll- |
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| 4theloveofjake wrote: | | Does anyone know what happened to her ? Haven't seen her post in a very long time... |
I'm here, and gosh.. thanks so much for asking about me. I apologize for my absence and would like to now communicate where I have been.
I'm sorry I haven't had the courage to do so sooner. And please forgive my lengthy reply. I don't know how to do this without detailing my heart to you, regarding it
Please feel free to scan over it, if you like.
Right after Christmas of this year, a turn of events occurred that would begin staging me for some of the most intense and challenging days I've ever known.
My husband Jeff, began discussing down-sizing my small heard of young horses as well as my finding another home for my 'hot' riding mare. He felt a boarding situation would be better for me. He was concerned that all I did was sling hay, muck stalls, haul manure, repair fencing, etc. He felt I never had time to ride and enjoy my horsemanship.
It didn't take me long to conclude he had made a good point and I felt strongly that I needed to heed it. It was a most heart-wrenching decision but one by one, I managed to get them all placed in new pastures I felt comfortable with.
I did experience major withdrawal pangs for a few months having horses I had come to love so much, no longer around me. But somehow I knew it was best.
I was free now to make road trips w/ my daughter Audrey who as some of you may recall, is physically challenged. We enjoyed going back down to our coastal home every other week, enabling us to spend more time with my husband Jeff. He has been waiting on our house there to sell before retiring to the mountains to be with us full-time, where Audrey needs to be for her medical care.
It was nice to feel somewhat rested, even though I did miss the daily chores around the barn. This new found rest however, was short lived. A few months after my settling into the big transition, the reason 'why' my horses would need to be placed came into full circle.
In March of this year, (wiping tears here big-time now), my wonderful husband and best friend Jeff, was diagnosed with a large malignant tumor in his cecum, a pouch at the beginning of ones colon that connects the large intestine to the small. Even worst, this primary tumor in his cecum had spread other tumors to his liver. We were told he had at best, only a few months to live. His liver was carrying 95% of the tumor load that had originated from the 'primary' tumor in his colon, leaving his liver inoperable.
My husband has always been and is still today, even in the midst of his current physical struggles, a positive, energetic, happy man- someone I do not want to live my life without.
In a moment, everything changed for us on a otherwise routine Friday afternoon. A GI specialist approached me with a very concerned look on his face. He had just concluded a colonoscopy in an attempt to locate the cause of extreme symptoms Jeff was having in his colon region. He came into Jeff's room and asked me to please sit down so we could talk.
Jeff was still asleep from the anesthesia and all of a sudden I am hearing in a very gentle tone of voice, that my husband has a large and significant mass located in his cecum. And that also noticed, were similar lesions on his liver. He goes on to tell me he is almost certain this is not good news for Jeff and that he is sending tissue from the tumor off to be biopsied. Naturally I was stunned beyond belief but did manage to ask a few questions. The devastating responses I received was that he was of the opinion Jeff was a very sick man with a poor prognosis. That treatment for a complete recovery might not be available due to the tumors on his liver.
You can't imagine the shock this was to me. It hit me head on with a force I honestly did not know how to deal with- I was literally traumatized-
I won't go on and on here about how devastated I was, but once Jeff woke up and I had ever so carefully told him about what was found, (my choice to do so and one of the hardest things I've ever done in my life), I absolutely lost it on his chest in that hospital room. Even in his drowsy state, he knew I was on my way off of a mental cliff that I might not survive, even though it was he that was in trouble. He later told me he realized he had to think quick to save me from a complete melt down.
In his great wisdom, he sat up in bed, took my shoulders in his hands and with the greatest conviction I have ever known him to have he smiled and said, 'honey, we're going to change the course of this thing. I'm not ready to die, I have unfinished business to attend yet. We can beat this diagnosis, but we'll have to do it together. It's going to take 100% of both our focus and determination'.
I managed to get a hold of myself after deciding I didn't have time for the fear that had began to paralyze me. I had to drive us home and as we both sat quietly during that time, I began staging our fight for a solution in my mind, that very day.
After a few 'vague' consults with local oncologist', I convinced Jeff that even though we hadn't been advised to do so, we needed to seek out a cancer specialist. Someone more knowledgeable than the two we had seen locally who were all dancing around the issue of a treatment plan. Jeff agreed and much to our amazement, the medical oncologist specialist located at Duke University Medical Ctr., agreed with his colleagues we had previously seen in Wilmington. His opinion was that there was nothing that could be done before establishing a 'base-line' for Jeff's disease. That he would compare all future tests every 4 months and go from there- Go WHERE I wanted to scream- if my husband survives past the first quaterly comparrison, he is certainly not going to be around for too many others.
He maintained his 'let's 'wait & see what happens' attitude and continued to say, 'we'll do our best to keep you comfortable Mr. Phillips'. There was no treatment plan whatsoever in our consult with this leading oncologist specialist. I refused to accept it.
For the first time in my life, I openly disagreed with a specialty physician. (I've dealt w/ many because of Audrey) and we walked out of his office more puzzled than before we had arrived. Jeff was sick and complacent that day, but I knew we would not be back in 4 months as he had instructed us to do. I did ask if we could get some more specific testing done at Duke however while in my mind I knew we would be continuing our search for a better physcian.
Day and night I scoured the Internet learning any and everything I could about the type of primary tumor the pathologist had explained Jeff had. It was a rare form of cancer I had never heard of. Carcinoid Syndrome. Meaning, it had already spread to his liver and was now considered to be in advanced stages. No symptoms are normally felt until it becomes 'advanced'.
Carcinoid tumors are of neuroendocrine nature, that originate in the cells of the neuroendocrine system and are characterized by the production of serotonin. They are quite rare with only 15 or so in 1,000,000. The complexity of this type of tumor is the secrecy of it's nature. Like I said above, most individuals don't even know they have a cancerous endocrine tumor growing inside of them, until the tumor has grown and reproduced to other organs.
They eventually become a burden to the body because the elevated serotonin levels have increased to the place the liver can no longer filter it properly in the bloodstream. At this point, very uncomfortable symptoms begin, similar to irritable bowel syndrome. In earlier days, there have been patients who have expired inappropriately diagnosed, because of carcinoid cancer.
Most medical oncologist' today know very little about this type of cancer. They 'may' treat one patient with this condition in their entire career. And when a patient does present himself with this rare diagnosis, the busy oncologist' tend to be very passive in their treatment of it. This is the opinion of many I have met online who have either been diagnosed or dealt directly with this cancer.
I'm studying morning, noon and night and telling the oncologist', a professor at Duke University, tests that need to be run from what little I had learned in my research. It was a frightening experience witnessing how he seemed to think Jeff's cancer was too far gone to attempt a fight.
I'm on an unstoppable mission to find a physician SOMEWHERE in the world, that would take an aggressive approach to a treatment plan against his cancer. I felt the hour glass had been turned over and the sand of Jeff's life was trickling down. I had to find a doctor that would know how to help us and I had to locate him fast.
With many sleepless nights of research and a few very special individuals I had met in the 'not so many' online carcinoid cancer forums, I began to see possible assistance on the horizon.
We FINALLY located a very aggressive radiology oncologist who might be able to help Jeff. He is known internationally for being instrumental in reintroducing an important new treatment for end-stage liver cancer. It is the infusion of radioactive microspheres, directly into the tumors, cutting off their blood supply. If successful, it offers a longer prognosis to patients who would otherwise be kept comfortable, with no other treatment option available.
We met with Dr. Kennedy and he told us up front that unlike most medical oncologist', he was very aggressive in his treatment of end-stage liver cancer. He also goes on to tell us that one has to meet certain criteria before insurance will cover the costly procedure. The most important being that the patient has to be a proper candidate- like 'where' the tumors are located in the liver and how much good liver tissue is left surrounding the area where the radiation will be infused. My heart was about to beat out of my chest wanting him to inform us as to whether Jeff was a proper candidate or not. But I held my tongue.
He had reviewed all of Jeff's tests & scans I had sent prior to the consult, time being of essence in my opinion. And then he began his very organized discussion of precise information regarding the best way to approach and hopefully contain Jeff's liver disease.
How wonderful it felt to finally sit before a physician who knew what the heck was going on. He spent 2hrs with us and at the end of his thorough presentation of what lies ahead for Jeff, there was no question that this was the physician we had been searching for.
He shook our hands and said, 'I say we get busy getting Jeff some more time'. With tears streaming down my face, I thanked him over and over again. I finally had someone other than myself, a DOCTOR now leading the way in my husbands unique situation.
Jeff has been scheduled to receive a 'trial-run' of a few microspheres next Tuesday, June 8th- If his liver accepts them with no adverse response, the following week on June 16th, Dr. Kennedy is going to infuse all tumors in his liver with radioactive microspheres. If successful, his current prognosis could improve by a possible 5yrs. Which feels like a lifetime to us at this point.
Our next obstacle will be to have Jeff's primary carcinoid tumor in his colon removed. This may possibly get him even more time. It's a surgery most medical oncologist' are not willing to take on because of it's complex nature- but Dr. Kennedy has already recommended a few surgeons throughout the US for us to consider. One he highly recommends is located in Nashville, TN about 6hrs. from us. The surgery for him to remove the tumor will hopefully be scheduled 6-weeks out from the microsphere treatment.
I realize this is a very long explanation of where I have been. But I do have my reasons for including all of the information I did. The biggest comes from a compliment Dr. Kennedy's patient care & research nurse gave to me.
She had told me when I had first tried to schedule an appointment w/ Dr. Kennedy, that the only new patients he was accepting were those in critical condition that were referred by a specialist. I was disappointed but didn't argue with her, because I had told her Jeff was already in the advanced stage. She went on to say the oncologist at Duke would probably refer Jeff soon.
I managed to find someone who had the ability to contact Dr. Kennedy directly- this person asked him if he would consult with us and much to my relief, he agreed to do so. He told my contact person to have me call his office and ask his research nurse to schedule us an appointment with him. That he would make her aware I would be calling, without a referral.
She remembered me from before but still asked if I was the person she had spoken with a few weeks ago. I told her I was. She went on to explain how she was sorry she hadn't been able to schedule the appointment for Jeff before - I told her I totally understood and was just appreciative that Dr. Kennedy was willing to consult with us now.
She then went on to say, 'you know, the few carcinoid patients we have seen are generally strong willed individuals like yourself. They aren't referred by a specialist, but manage to get a consult with Dr. Kennedy regardless because they refuse to take no for an answer. She commended me on my determination to advocate the best care possible for Jeff.
I tell you this not to seek attention to myself. I tell you because in only a few months I have learned a few very valuable lessons.
Never take 'NO' for an answer when it challenges the health & well-being of someone or something you love. Not until you feel in your heart that it is the best response. You will know better in your heart when 'no' is best, more so than a lofty speciliast with a schedule to meet.
When it comes to personal medical treatment of any kind these days- always, always do your homework. Don't ever assume professionals you are seeking help from, have already done the research and are giving you the best and most accurate information available. I'm not generally a 'take charge' type of person when it comes to professionals in high places, but I have been forced to take charge in seeking any optimistic help for Jeff. In my doing so, it's possible I may now get a few more years by his side.
Had we accepted the 'second opinion' by the specialist at Duke University, well let's just say I'm afraid to even think what we might be doing very soon.
Another thing I hope you see from this is that when you find yourself in a mind bending, daunting situation that absolutely consumes you in fear, be it a posionous snake or terminal illness, rise up out of your fear quickly and get busy finding a solution. Had Jeff & I accepted the original treatment options, our remaining time together would have indeed been short.
The time we are hopeful for today from the microsphere treatment, is because we broke free from the fear that had encased us both that Friday afternoon and aggressively sought information for ourselves, regarding this rare form of cancer. We realized quickly we didn't have time to be fearful and now we have a very good possibility of 5 more years, which honestly seems like an eternity to us.
If you have stayed with and read to this point, thank you for your concern. I hope that if you ever find yourself in a similiar situation, you will see that by pressing on, you will eventually get to where you need to be. The 'survival of the fittest'.
I've missed you all so much. I've missed my horsemanship. I don't necessarily feel ready to start engaging in the 'other' issues of my heart right now, but I do believe I 'need' to.
I will be assisting Jeff down some treacherous trails, but in order for me to do that effectively, I must take care of me too. He wants that of me and has been nagging me like crazy to go ride my horse, lol.
He is now on a long term medical leave of absence until his early retirement kicks in. We have put our mountain cabin on the market and moved to the foothills, closer to where he needs to be.
We plan to live each day for the rest of our lives, enjoying life and helping others find their way in challenging situations, to the best of our ability.
Thank you Carol for reeling me in, yet once again. Your timing is perfect as always- Thank you Deb, for the loving bridge you so graciously extended to me, making it available for me to comfortably find my way back here.
And to each of you that has personally messaged me, I am so touched by your kindheartedness. I will reply soon, I promise.
'Who knew' I would be missed by such strong, seasoned horse lovers? Certainly not me.
There is a true family nuclear present here in this forum and I am so proud to be apart of it.
Remember waaaayyy up above Jeff saying he had 'unfinished business to attend'? That business is to one day hop up in a saddle for the first time, get some lessons under his belt & ride the trails! He continues to tell me he will get the courage to do so one day soon! :D
Until then, he finally got his wife on the water in a kayak last weekend, one of the things he loves to do in life! This wonderful day was possible due to the medication Jeff is now receiving specific to his diagnosis, to control his symptoms.
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Life is good where we are now, most definitely better than where we were a few months ago!
I'll keep you posted!
With Much Love Always, -Suzie
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"Not all who wander are lost" JR Toilken
Suzie Phillips
aka Ashley Kutcher
*Lifetime Member Bad Apple Society*
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Last edited by NCMtnGirl on Mon Jan 24, 2011 12:18 am; edited 14 times in total |
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Docked by the Bay
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Joined: 21 May 2010
Posts: 147
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| Posted: Thu Jun 03, 2010 11:20 am Post subject: |
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OH my dear, God bless you and keep you in his loving arms. We will all have you in our thoughts.
Maggie
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Maggie |
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thelmanelle
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Joined: 20 Sep 2009
Posts: 3253
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| Posted: Thu Jun 03, 2010 11:22 am Post subject: |
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Suzie,
We don't always know what to say, but prayers go out to Jeff and you. I admire Jeff and your encourage in such a hard time.
We hope you will keep us posted as you can. |
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learningthedance
Member
Joined: 31 Jan 2009
Posts: 1288
Location: Sarnia, Ontario, Canada
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| Posted: Thu Jun 03, 2010 1:14 pm Post subject: |
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Wow. My thoughts, prayers, and every bit of positive energy I can send, are heading your way.
(((hugs)))
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Elise
"Some people are always grumbling
because roses have thorns;
I am thankful
that thorns have roses."
Alphonse Karr
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PasoBaby_CarolU
Site Admin
Joined: 31 Jan 2009
Posts: 9038
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| Posted: Thu Jun 03, 2010 5:42 pm Post subject: |
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Oh Suzie, I had no idea how serious your absence was. I fully realize how cancer can change your life and you go from being a normal couple to a support person scheduling radiation, chemotherapy, doctor and hospitals. It's wild.
My heart goes out to both of you as you fight this terrible disease.
I do wonder, if they remove the tumor, would a liver transplant work then?
 Hugs to both of you. You take care of BOTH of you first!
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Carol Nudell
Corazon de Oro Paso Finos
"The path to your horse's heart lies through your own."
Rumors are carried by haters, spread by fools, and accepted by idiots. - Words of Wisdom - Mhar
"Great minds discuss ideas; Average minds discuss activities; Small minds discuss people." - Eleanor Roosevelt |
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bit
Member
Joined: 02 Feb 2009
Posts: 4354
Location: Kansas
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| Posted: Thu Jun 03, 2010 6:44 pm Post subject: |
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I'm very proud of you, and how you fought for a yes, when all you heard was no. Good girl. You are someone I'd want on my side. Your husband is right. Go ride your horse. They are like medicine, and you'll return with new strength, Ms. Suz.
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"It was once said I should clear my head for one cannot ride a Thoroughbred. Hot they are. And too fast they be. Forever on the fly. But I stayed the course and have no remorse. I love my off the track racehorse!" |
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becky b
Member
Joined: 03 Feb 2009
Posts: 735
Location: Gastonia, North Carolina
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| Posted: Fri Jun 04, 2010 3:26 am Post subject: |
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| You and your family are in my prayers. Wish there was something more I could do to help. Please keep us posted. |
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4theloveofjake
Member
Joined: 04 Feb 2009
Posts: 2093
Location: “The question isn’t who is going to let me; it’s who is going to stop me.” ~ Ayn Rand
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| Posted: Fri Jun 04, 2010 2:31 pm Post subject: |
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Suz,
I'm so sorry to hear of your struggles and tribulations. You have been a rock in your husbands battle. Thank for the message of "not taking no for an answer" Great advice and very kind of you to remind us all to go with our intuition. My prayers and thoughts go out to you and your husband.
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Great Spirit, help me never to judge another until I have walked in his moccasins.- Sioux Prayer
“Do your thinking at night, and your feeling during the day.” |
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alexwein
Member
Joined: 28 Dec 2009
Posts: 550
Location: Ashland, Oregon, USA
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| Posted: Fri Jun 04, 2010 6:47 pm Post subject: |
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Wow, I also will keep very healing thoughts for both you and your husband! I think Bit and your husband are onto something. Horses can really help heal your heart and soul and also help balance the difficulties you are facing. My very best to you and to Jeff!
Alexandria
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Alexandria & Dakota "Dun horse, magic horse, come when I call you!" Thundering hooves, flying mane, the dun horse came.
"We cannot escape fear. We can only transform it into a companion that accompanies us on all our exciting adventures." |
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misstux
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Joined: 27 Feb 2009
Posts: 948
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| Posted: Sat Jun 05, 2010 2:14 am Post subject: |
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| Suzie, you and your family are in my heart. |
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