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Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/7/2008 10:52 AM (GMT -7)   
I had a long talk with my cousin this morning. She is 56 and has terminal cancer. She had radiation for the brain cancer, lost all her hair within 5 days, she still has sores in her mouth and some soreness on her head from it. She has had two chemo treatments and is having another tomorrow using three different chemos. They did another brain scan and she will find out this week if the radiation helped with the cancer. After 9 weeks of chemo she will have another PET scan to see if it is slowing down the cancer in the rest of her body. In other words she knows her time is limited she just doesn't know how limited.
 
I know where she came from so I wasn't too surprised at the positive attitude she has, both her parents were the most positive people I have ever known.
 
She didn't want to spend a lot of time talking about herself other than update me on everything. She chose to talk as if nothing had changed since we last talked before she found out she had cancer. She is not in denial, she just doesn't want to spend the rest of her life talking about what is killing her. We even spent time talking about my fibro, her choice not mine. Teri has always been the one full of suggestions when it comes to keeping healthy and that hasn't changed. She is getting the best help possible to buy more time.
 
I felt quite humbled by our conversation when I got off the phone. We have half the same blood running through our veins, our dads were brothers. So if she can face terminal cancer head on with a positive attitude I can more than handle this DD with the same positive attitude. I've been working on this for some time now and have made a lot of progress since I've been on this forum. I hate to say this cause I know it will go to her head but Little Miss Sunshine has been a big help in this department.
 
My point is I know it's hard dealing with this DD and it can get us down. Our lives have been changed so much and we have lost so much of the person we use to be. But it is not a death sentence. I don't want others to have to have a close family member dying of a terminal disease to see how blessed we are to only have fibro. Especially when we don't know how soon they might find the cause and cure for fibro. We have hope in our lives and there are many out there that don't have that hope. Positive thinking and attitude can take us so far if we let it. One choice we have is how we think, no one can take that away from us.
 
So please do some positive thinking today.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 9/7/2008 11:32 AM (GMT -7)   
Wow.  Thanks for the dose of perspective.  My mom (who passed away a few years ago), handled her cancer with the very same positive attitude and outlook.  I can only hope to face my illnesses with the same grace that she did.  :-)
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.
 
 
 
 
 
 


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/7/2008 12:50 PM (GMT -7)   
Great post Marlee!
 
I will be the first to admit that I have a hard time staying positive about myself-not just fibro.  But, when you hear things like what your cousin is going through, it does put things in perspective.  I always tell myself that there are people out there who are 100 times worse off than I am.  Sometimes it's hard for me to remember that-and I'm not talking about fibro fog.  Please let your cousin know that she is an inspiration to me-and I'm sure to everyone here.  She may not know it, but she (and you) reminded me to hope, today.  Hope has always been my "word."  I even had it tattooed (in Japanese) on the back of my neck-so I wouldn't forget.  Maybe I should have had it tattooed on the inside of my eyelids-because I DO forget, sometimes. rolleyes
 
Anyway, thanks for helping me remember to hope! :-)    BTW-I think I know who Little Miss Sunshine is, but could you tell us, anyway?  If not, that's OK.  Even if I'm wrong, I have my own idea who it is. wink
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40584
   Posted 9/7/2008 1:41 PM (GMT -7)   
Hi Marlee,
 
Your cousin sounds like a real fighter.  I am glad that she has such a good attitude.  And I am happy that you got to talk to her today.  And yes, it would be very humbling.
 
I often catch myself complaining about my arms or legs aching, but then I think, I am fortunate to have those limbs to complain about.  There are many others who don't.  And it seems the ones who have it the hardest have the best attitudes.  So as we know, life goes on, no matter what.  And we should face it with a breath of fresh air and a smile.  And be glad that we got to see the sun come up this morning.
 
Thankyou for the insight
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 9/7/2008 3:15 PM (GMT -7)   
Marlee, thanks for the post.  It's such a good reminder for all of us.  So true.  I can always look around me and see so much more hurt and pain in others.  I'm thankful every day that I open my eyes and can get out of bed one more time.  So many others don't even have that opportunity.
 
Kelly, I think Marlee is talking about our dear friend Sherrine.  I'm so thankful for Sherrine and her positive attitude.  She is so right about keeping a positive attitude.  If we live with negativity we are going to always be down and out.  My cup is always half full.  That's the way I see it and that's the way it's got to be.
 
Thank God for friends like you all out there in Fibro land.
 
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/7/2008 6:13 PM (GMT -7)   
Marlee,
You are gonna get nominated for the "Little Miss Moonshine" award if you keep being so darned positive. tongue I know what you mean, though. Whenever I visit with my daughter and watch her manage an 11 month old as well as the 9 month old that she is babysitting and her not walking well herself yet! Whew! She not only has that dumb spinal cord injury to mess with, she has Crohn's, fibro and horrendous allergies... Me with just fibro... Yeah, I can manage. We just need to be more nicer to ourselves, right?
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 9/7/2008 7:57 PM (GMT -7)   
Dear Marlee,
I'm so sorry you and your cousin are going through this, no one should ever have too... I lost two cousins to cystic fibrosis and that was very hard as well.
You have my thoughts and prayers as well as your cousin.
Soft hugz
************************
* Asthma
* Allergies
* Osteoarthritis
* Spinal Stenosis
* Mild DDD
* Enlarged
Pituitary Gland
* Fibromyalgia
*************************

Patient: "I always see spots with my eyes"
Doctor: "Didn't the new glasses help?"
Patient "Yes, now I see the spots clearer"


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/8/2008 7:51 AM (GMT -7)   
Jeannie, I'm so happy your daughter is walking now, that is so great to hear. I know the past year has been quite a challange.
 
She is a pillar of strength, hummm wonder where she gets that from??? smilewinkgrin
 
I can't imagine taking care of a 11 and 9 mo olds under the best of conditions. nono But for her it has to make her feel so good to be able to do that after what she has been through.
 
Karen, I liked what you said about your arms and legs hurting.
 
Kelly, Little Miss Sunshine is Sherrine. Where have you been girl???
 
We do face challanges everyday living with fibro and for many, other illnesses too. But we can still be positive thinkers and count our blessings.
 
That doesn't mean we should give up and be happy with having fibro. I'll never stop searching for ways to help myself and others. It means we have hope and we can think about next year and who knows what will be on the market next year to help us.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Post Edited (Marlee2) : 9/8/2008 1:53:26 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/8/2008 9:50 AM (GMT -7)   

Awww, Marlee, this has made me feel sooo good!  You are becoming Little Miss Sunshine, Jr.!  You are absolutely correct in what you posted and I'm glad it is "clicking" with  you  now.  Fibromyalgia is a pretty miserable problem...especially since the doctors don't know what causes all of the pain and other symptoms. You know you will be in pain, but you can still be in pain and be happy and thankful for all of your blessings at the same time.  Life is made up of choices.  I could choose to be miserable, become bedridden or a recluse and be in pain, or I could choose to keep a postitive attitude, look forward to each new day, since we don't know what it holds for us, keep moving and enjoying my life and be in pain.  I like the sound of the second choice and that's the one I've made.  Because of that, the pain isn't controlling me and I'm having a good life!  I'm glad to see that you are doing the same thing!  I'm proud of you, Marlee!  yeah

I HAD to be nice to you because of your lovely post, but I'll get back at you for causing my head to swell like this!  OUCH!  tongue

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/8/2008 10:27 AM (GMT -7)   

Marlee,

Apparently, I've been in a thick fog, but I think there are a few people here that could be "Little Miss Sunshine," in my opinion.  Sometimes, a few of you know just what to say when I'm feeling bad. sad   Your post about your cousin made me want to call you "Little Miss Hopeshine." wink

Anyway, I really mean it when I say that everyone here really means something to me, and there are a select few of you who have really helped me through some hard times.  I'll never forget y'all for making it just a little bit easier to cope.  I've had a rough few weeks, and I hope that somehow I can give back that care & support that you've given to me. blush


FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/8/2008 10:39 AM (GMT -7)   

Hi Marlee! I'm so sorry to hear about your cousin's battle with cancer but at the same time so pleased to hear about her attitude and approach. I lost my brother 10 years ago to cancer. It began in one of his kidneys (it was removed) and, subsequently, over his final 5 years of life, reappeared in a lung (it, too, was removed) and finally reappeared throughout his body. He went through all that with the sores, pain, weakness, massive weight loss and final excrutiating pain that massive does of morphine could not calm. Through it all, he probably knew his time was limited as well but he always spoke of what he would be doing to regain his weight, strength and muscles once the cancer was defeated. He always asked how I or anyone else in the room was doing before any of us could ask him the same. I admired that attitude and courage so much......I can only hope that if I ever have to face cancer, stroke (what my mother died of) or heart disease/attack (what my father died of) that I would have even one-tenth of the attitude, fortitude and courage both your cousin and my brother have shown. My heart and prayers are with you, your family and your cousin for what lies ahead!

You said that she was getting the finest care available and, of that, I am so thankful. While going through this with my brother, I spent a lot of time on the internet looking up new breakthroughs and experimental treatments for cancer. Now, with my fibro, cfs and cebv, I spend even more time looking into the fascinating world of evolving medicine. I came across these sites a couple days ago.....I don't know if any of this could apply to your cousin or not but please have a look at it and see if any of this might be worth looking into for her. Terminal does not always mean "final".

http://www.robertsreview.com/

http://www.virtualtrials.com/noteworth.cfm

Gentle hugs,

John



*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

Post Edited (jev) : 9/8/2008 11:43:46 AM (GMT-6)


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/8/2008 10:42 AM (GMT -7)   
Marlee, thanks so much for posting this. I am very sorry for your cousin, but what a remarkable woman she is, and what a wonderful outlook to have on life. If you can't change it, make the most of what you are given and enjoy life to the fullest that you are able at the moment. Why waste time with regret?
in the land of Limbo, taking OTC meds (which don't work).  Started at 5mg of amitriptyline.
Waiting for referral to rheumy to get a dx. waiting, waiting, waiting....


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/8/2008 10:53 AM (GMT -7)   
I know I have talked to you about your cousin before but she sounds to absolutely special!  She is fighting the fight and you never know what will happen.  I'll be praying that her treatments are working well on her.
 
My grandmother had been diagnosed with lymphatic cancer.  They did exploratory surgery on her and there was a tumor that went throughout her abdominal cavity.  They closed her up and gave her six months to live.  She trusted the Lord and took chemotherapy and the tumor shrunk to the size of a golf ball and never gave her a problem again!  She passed on fifteen years later of Alzheimers!  So, even when it looks the darkest, there is always hope.
 
She has taught you some valuable things through her trials and you will always remember that.  That makes her so special.  I hope you start getting some positive news about her health.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/10/2008 8:42 AM (GMT -7)   
Thanks for all the kind words about my cousin. I'm glad it helped some of you to put fibro into perspective. Sherrine has been so nice to me this week I can't believe it. devil
 
Jeannie, when you said Little Miss Moonshine it made me think of the stories I've heard about my grandpa even though I know you weren't talking about the liquid kind. turn
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/10/2008 9:07 AM (GMT -7)   
Don't worry, Marlee.  I'm saving the good stuff for the holidays!  devil
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


sheryl=jk
Veteran Member


Date Joined Oct 2004
Total Posts : 4083
   Posted 9/10/2008 9:40 AM (GMT -7)   
Thanks Marlee for sharing your cousins' experience with us, it does help us put things into prospective.
And I do pray for a cure for her cancer, and only wish i had half the positivity she has.
 
God Bless,and have a Great Day!!.......Love.....Sheryl
xcema,hypermobile,Chronic Bronchitus,Fatigue,Positive ANAFibro-05--Had surgery on left & right knees 06, Interstial Cystitis-06 Spondlylosis/Disc Degernation Disease severe arthitis lower back -08,implantedInterstim-06 hysterectomy & IBS-06 Arthiritus-04 Depression-04GERDS/ Hiatial hernia -07   Anxiety-07 Gastroparesis-08--Occasional Migraines
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