OT-I met an incredible person this morning.

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straydog
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Date Joined Feb 2003
Total Posts : 13466
   Posted 8/25/2010 10:58 AM (GMT -7)   
Morning all, I felt compelled to write this little note as an inspiration if nothing else for us here at the CP forum. I came home from going to school with my grandson this morning to find my husband visiting with an unknown fella in a wheelchair in our garage. My husband has been building a new workbench for a over a week now and the fella saw this going on as he got up to the driveway. Husband likes doing woodworking and it quite talented at it.
 
I made my way up to the garage and introduced myself to this fella. I learned he lives two blocks behind us and I knew I had not seen him on our street before. He was telling us that he too is into woodworking, but since losing the use of his entire left side of his body he is fearful of using small tools and objects afraid he may cut himself. He went further to tell us he lost use of his left side due to chemo therapy he had done previously. He was dx'd with inoperable brain cancer Jan of 2009 and was told to get his affairs in order that he would be pushing it to live to November.  He has been thru various rounds of different chemotherapy and radiation. He stated that early on he had a wonderful nurse at his oncologists office that spent a great deal of time with him and got on a personal level with him and his wife. He had to be built up because his immune system was shot long before any of the heavy hitters ever were started.  She informed him that there was many different kinds of chemo for brain cancer but a dr would not touch a patient with some of it unless their immune system was good. This nurse got together a lot of information on "juicing" to build the immune system. He said the first month was the toughest and it tasted horrible.  He said he dedicated himself to juicing no matter what and it boosted his immune system 500%. His drs continue to be shocked that he is in excellent condition when his body has been ravaged by the hard cancer drugs. He said to us, can I prove it that juicing did this, no, because there is not enough info out there or any studies done to prove it. But, he says I know I would not still be here if it were not for doing this. He is currently on a chemo drug now that is fairly new and it either kills the person within two weeks or they can live as long as 10-12 years.  He says the drug is probably one of the hardest ones he has done so far and he really feels the ill effects of it.
 
What amazed me is as I stood there talking and listening to this man, I never heard him complain, no pity me please, nor was he bitter. He has obvious deficits, but other than that not knowing him he is your average guy.  I can't begin to explain how I felt after meeting this man, except to say to my husband after this fella left. My words were "and we think we have troubles and problems, how would you like to have his?"  He is the most courageous person I have ever met in my life and it was a real eye opener to say the least. It was almost like a wake up call.
 
Hope everyone has a decent day.
 
Susie
 
 
 
 

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 8/25/2010 12:35 PM (GMT -7)   
Susie,
My sister is just like this man. I have a disabled nephew- her first born- and while she was upset and even devastated when he was diagnosed with Angelman's Syndrome- she never once hesitated for a second when it came to not giving up on her son. She fought the government for the things and therapies that they all told her would do no good, and she insisted that he would learn to walk and he took his first steps at 9 years old. I can remember the day when he stood up and walked, all by himself, astounding us all- except for her of course, she knew he would- one day.
When she was diagnosed with Acute Lymphocyctic Leukemia- the same kind that killed our oldest brother when we were all children- when everyone else fell apart, she told us all not to be afraid, she would beat this too- and she has.
If you knew my sister before she had her son, she was selfish and self centered and most of the time , I didn't like to be around her. I don't know where she found the strength and determination to deal with the things she has to, each day, but instead of not wanting to be around her, I want to be her , when I grow up.
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/25/2010 2:05 PM (GMT -7)   
Susie and Sandi,
Beautiful stories. I haven't been reading or posting much lately, but think it's so important to affirm the positive and hopeful stories when they show up. And that western medicine doesn't have all the answers, although it has some of them.

The human spirit can sometimes be the most potent medicine of all. I think we all can find someone in our lives like that gentleman and Sandi's sister (of course, she had to face serious adversity first, right?). Maybe when we're all asking "why" we got CP, and our various conditions, it's good to remember (I'm saying this for myself, not just others!) that many people face severe hardships, and it's more about how we face them. Although I bet even the people you're speaking about have their bad days but just don't dwell on them.

Thanks for sharing!

PaLady

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/25/2010 3:41 PM (GMT -7)   

 

   Dear Susie,

    Thank you so much for sharing your experience. The way you described your interaction.. it felt like I was right there with you, meeting him.

     I firmly believe we all have courage. It comes at different stages in life, for different reasons. Sometimes from devistating events. Sometimes loss. Other times from a chance experience or witnessing an blessed event. Reguardless of how it comes into a man or womans life, it is always a beautiful thing to see!

     Thank you so much for sharing, it is a heart warming story.

*hugg*
  dani


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/25/2010 6:50 PM (GMT -7)   
Hi Susie (and Sandi),

Thanks for sharing such a touching story! It brightened my day!

hugs,
Skeye

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 8/26/2010 11:21 AM (GMT -7)   
Sandi your sister sounds like an awesome lady too. Thank you for sharing your sisters story with us. They are truly amazing people aren't they. Wow, what she has survived and handled in a s lifetime. Isn't it incredible how these people manage. Even as this fella spoke about knowing he is dying, he told us about some of the things that has happened with his body along the way and such. He said his memory is a big issue for him, just forgetting the simple things. Just the manner of him speaking and the acceptance of the situation was mind boggling. He is only human so yes I am sure he and anyone in this kind of situation has their moments, we all do. I feel quite certain he will be back around to visit with my husband since he enjoys the woodworking.

Susie

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/26/2010 12:10 PM (GMT -7)   

 

     Thank You Susie for posting this! :)

 

       SE:)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/26/2010 6:19 PM (GMT -7)   
Its amazing how a chance meeting can totally change your perspective on life! Beautiful stories. Really uplifting. Thanks Susie and Sandi, golitho

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/26/2010 8:50 PM (GMT -7)   
Susie
 
I think some of these cancer patients are the strongest individuals in the world. As I have told many of you I was fortunate enough to have worked as an RN on a  Oncology unit!  and a nurse extern for close to three years while going through nursing school!  These people are special!  The pain that most cancers cause is .........well............ excruciating is one word to describe it but even that is not adequate!  It is unbelieveable the pain that some cancer patient suffer with!   Allot of cancer patients have to face their own immortality, I have sat down with many and talked with them about there wishes when they die. and how they will be treated and where they want to be and who they want to be with them when they finally depart!  For some I have actually been there with them and their families when that moment came.   Each and every one of them was so different, but it was and honor to have met them and taken care of them, during that difficult and trying time.  You know I always had such mixed emotions when one of our cancer patient passed away. I was sad for their family and sad for me, because I had not only lost  a patient I had lost a friend! ( as we often seen these patients over and over and over again! and we really got to know them and their families extremely well!)  But I also often felt a sense of joy  and relief for my patient and my friend,  as they were now going to another place and they were no longer shackled to that body that was consumed with cancer and racked in such terrible pain. They were at last free from all that.  I don't know if any of this makes sense, but I gained allot of wisdom from these brave courageous people!  They do change your life! When ever I think I have it bad, I think about these people that I have met and cared for, and I realize I don't have it bad at all! Not at all!
 
White Beard 
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 8/26/2010 10:00 PM (GMT -7)   
This is an especially inspiring thread. Thank you all who have shared your stories. You humble me.

Chutz
Moderator on the Fibromyalgia and Chronic Pain forums

“If you want to live a happy life, tie it to a goal, not to people or things.” Albert Einstein

Áthas
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 8/27/2010 1:45 AM (GMT -7)   
Wow, thanks for these stories, that's really amazing.
My boyfriend's mother is in her mid-seventies and she has two artificial hips and one (might be two by now) artificial shoulder. Last January, she slipped on an icy road, fell and broke her arm and had to go through surgery and physiotherapy again. Her husband and her daughter took care of her and even though she admitted that she wanted to do more things herself again, she wasn't bitter in any way. She is actually German and when she was a child, still experienced WWII and the fear of the bombs and having to stay in some basement for hours. But she never really makes a big deal of any of it and is still very active.
That helps me to remind myself to stay positive and not complain - aside from venting here sometimes.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 8/27/2010 12:17 PM (GMT -7)   
WhiteBeard I think I understand what you are saying because you do get to know these people on a personal level, especially you because I think oncology was your calling, you are special & gifted in that area obviously. When you speak of your work with the cancer patients there is so much that flows from your words that only someone special could do and handle that field as it should be handled. I needed a WhiteBeard when my mom was dealing with cancer the last 11 months of her life, although we never had one. She was a trooper too, God only knows how strong that woman was, just like this fella I met the other morning.

I truly believe you about the pain they can suffer with. I just had some feeling come over me after meeting this fella, can't fully describe it.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 8/27/2010 2:40 PM (GMT -7)   
Straydog
I lost both of my parents to cancer too! My mother had just turned 62 and she died of colon cancer and my father at 75 of lung cancer.  The both died  in their home with hospice care. I know the pain that they had, Cancer causes a really deep down penetrating type of pain, and most meds can't even touch it!!!.There is one med they say that really works the best for cancer pain without making the patient "out of it" an "comatosed" but it is highly addictive and is illegal  here in the states, but  from what I understand it is used in England for their cancer patients that are terminally ill, to keep their pain under control.  With a terminally ill patient there is no worry about addiction.  Sometime  I think our medicine here in the states is behind the times! And of course the patient is the one who pays for this medical insanity! You know straydog ( I know this might sound strange or odd) but cancer seems to bring out the best in a person! It exposes that inner strength that people have! It is impressive to see it in a person! I know that it leaves me in Awe! I know that feeling your talking about Straydog and you are right! You can not describe it, as it just can not adequately be put into words!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/27/2010 2:57 PM (GMT -7)   
Straydog,
My youngest sister reminds you of him. I envy that about her. She was born with 3 different genetic birth defects, along with being albino, legally blind, and grows cancerous moles at an alarming rate(goes in once a month to have them cut and scraped off). She use to run for the special olympics, when to college twice and got two degrees, researched and found 1 place that was doing trials on some lenses that could either cause permant and complete blindness or possible help her see. She can now see and drive a car. She has never complained, never said what about me, never asked anyone to do anything for her. I am happy you met someone so inspirational..I so hope he lives a long and happy life because of this new drug. Life is so short and we are never promissed tommorrow, appreciate it while we have it..however long that may be!! Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.
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