So many have asked me to share what I have done/been through/treatments...etc...with regard to sustaining almost 9 years with no recurrence after being diagnosed with stage 3c ovarian cancer...So I am going to answer honestly...despite the fact that it does not paint a good portrait of me as an ovarian cancer survivor...
I will start again at the beginning...
Diagnosed 10/13/2000 at the age of 34...stage 3c...had the required debulking surgery followed by 6 rounds of carbo/taxol...did not miss an infusion...had second look surgery 4/2/2001...came up clear...have been in a sustained clinical remission for almost 9 years...
I have not changed my diet or lifestyle in any way since...I eat healthy (most of the time) but I still eat McDonald's, Jack in the Box...still drink coffee like no tomorrow...not a big soda drinker...enjoy the occasional beer on a warm sunny day with friends...I try to remember to take vitamins and calcium when I remember...key word...am not on any medications at this point, have no insurance...bones are in the crapper due to osteoporosis yet I work as a CNA at a nursing home, so hopefully the weight bearing will do me some good...
I am BRCA 1+ and some have told me that may be why I responded so well to chemo...along with an amazing surgeon...it is certainly NOTHING I am doing to prevent the cancer from returning...I have no immune system to brag about...it is enough to get me by I guess...I am exposed to MRSA and all other manner of icky stuff daily, but take standard precautions...So I am careful for me and my patients...
I am NOT the poster child for what to do to post cancer...I live just as I always have...I am not proud of myself for I know I should be eating better and doing all I can to prevent cancer recurrence or a new primary...All I can say is that I am living...which I think at the end of the day is what my message is about...Cancer be damned...Live...no matter what...Live...not letting the cancer control you...that is what I think matters to me most...easy for me to say huh? No recurrences to deal with...but when I was sick and was told to "get my affairs in order" I went to chemo on my own...grocery shopped and cleaned house while the steroids were still kickin...and I worked M-TH each week 6 hrs a day...I went camping...I went hiking...I HATE BEING SICK...I do not like being in bed...In whatever manner suits your life, LIVE LIVE LIVE...
If you want healthy eating and lifestyle tips we should start a new discussion...I could stand to learn a few things...for sure...
I hold you all in esteem...I admire your courage, grace and the dignity with which you live your lives...I am truly HUMBLED...
xo
Kendal
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Follow up on almost 9 years
- By spunky66
- Posted June 23, 2009 at 4:00 pm · 10 replies
- In Survivor stories
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Taxol MRSA Surgery Hysterectomy GERD Sleep apnea Meditation Anemia Ovarian cancer Depression Osteoporosis Stress
10 replies
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- Newest first
- By katelynsmamaw
- Posted June 23, 2009 at 5:22 pm
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I'm not changing my lifestyle either. You only got one life and I am going to enjoy it while I'm here. I know lots of people do this diet or that diet. If that is what makes them feel better, then go for it! I don't know. Seems even the most fit are not immune from cancer. I live just like I always have, and will continue to do so.
- By FavoriteAunt
- Posted June 24, 2009 at 8:53 am
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Love your story and your honesty. I applaud you for knowing how to live the best life you can for all these years. We started out around the same time. I was dx 3C 12/00, had surgery and chemo and got 6 great years of remission. I'm now in my second recurrence.
I also have not changed my lifestyle to any great extent. I've always been one to eat healthy and live the right way, but nothing extreme. No one is immune to cancer, no matter how "healthy" they try to live, and I don't believe anyone can prevent a recurrence either. If there was a way to do either of these things, we'd all know it from our doctors and none of us would be on this board.
Years back my doctor told me to ignore statistics and "live my life." I've tried to do that, though at times it has been hard. But like the cute saying goes: life is short so eat dessert first! Keep doing what you are doing. I wish you many, many more happy years.
- By MinnieM
- Posted June 24, 2009 at 8:56 am
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Kendal,
Thanks so much for sharing. I think we are all looking for that magic bullet whether it be diet, chemo, or some random new therapy that will catapult us into permanent remission. There is no way to know for sure why some women achieve this, but your comments regarding living your life seem particularly apropos.
I haven't changed my diet either, but it was already pretty healthy since I also am dealing with osteoporosis, and trying to keep my blood pressure under control. It has seemed easier to continue with this since I've been used to eating that way for so long. And, should I achieve long term remission, maybe it will help with those issues.
Achieving a mental balance will be more difficult, since I find that cancer is constantly in my thoughts, probably because I have no hair and am still undergoing my first round of chemo. My hope is that once I get an all clear, I can live my life fully 3 months at a time until I have to start dealing with it again.
How do you handle the mental part of cancer? Are comfortable with your wellness, or do you still get anxious before each doctor visit, which I assume are only once a year? What helped you -- faith, meditation, anger against the disease -- get through the treatment and on to continuing a "normal" life? You seem very at peace with who you are now, and what you've been through.
Minnie
- By kmarienap
- Posted June 24, 2009 at 9:35 am
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I too am just like you! Made some changes, but as a whole, live life just the way I did before cancer. I was dx at stage 3c. Just passed my 5yrs with no recurrence. Had the same treatment you did. what are we doing right? I still say our attitude and the way we look at things has a lot to do with it! May all of us keep up the good work! karen
- By spunky66
- Posted June 25, 2009 at 3:01 am
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Dear Minnie-
I wanted to answer this question honestly and from my heart...survivorship-it is a blessing of course-but it has also been a source of "mental" complication for me...I come from a long line of women who have passed away from OVCA and my older sister was diagnosed just a year after me...she has not sustained a remission yet...we are both BRCA 1+...
I have met so many INCREDIBLE women...women I admire-women whose courage and grace I would love to have...women who have passed away-too young and with too many people they loved left behind...Surviving-well-it makes me question myself and how I can be a better person more deserving of my survivorship...I have a perpetual case of survivors guilt which I will probably live with the rest of my life. Am I at peace with myself...no...am a ways from it, if it will ever come...can I sleep at night? Yes...only because I have changed the direction of my life and how I live it and I try to be the kind of person that is worthy of this TREMENDOUS gift called remission...if I could trade places with anyone dealing with chemo even for one day-I would do it...truly...I cannot...so what I can do is honor each and every woman battling ovarian cancer right now by the way that I live and however I can help-via advocasy or other grassroots outreach...
As to the pre-check up jitters...I still get them...at the present time-actually for the last 2 years I have been uninsured and as a result have had no formal follow up. I did manage to get a digital mammo-which came back clear...did a CA125 but the clinic is holding my results hostage until I go in for an office visit at $65.00
One doctor used the word "cured" with me...I do not believe in any such thing...not once you have had a cancer cell invade your body...I do know what to look for and I am just loud enough to make myself heard...
I hope that helps some...and no, I do not meditate-could not possibly sit still long enough...LOL...
Hugs!
Kendal
- By spunky66
- Posted June 25, 2009 at 3:04 am
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Congrats on the almost 5 years...It was an AMAZING feeling when I made it that far when I had been told by my onc that it was unlikely I would make it that long...
Guess he did not know me well enough! :-)
hugs...
Kendal
- By kmarienap
- Posted June 25, 2009 at 8:18 am
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You are certainly a woman to be admired! You have no idea of what an inspiration you are to me! Thank you, karen
- By Ricki
- Posted June 25, 2009 at 9:22 am
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You are amazing and my kinda gal -pal!!! I love the "live...no matter what...live!" That along with my favorite verse from Jeremiah 29:11 "I know the plans I have for you...plans to give you hope and a future." I was diagnosed in March 2006 with fallopian tube cancer - 3A - had 3 rounds of IV chemo and 4 rounds of IP and am blessed my CA125 remains about 6. I am more conscious about food (almost no red meat but a little dark chocolate) and always considered myself healthy. I take calcium faithfully, ginger root, reseveratrol and arimidex (not BRAC positive but tumors were estrogen positive) . Probably the biggest change is my exercise program (pilates and zumba dance classes averaging 5 classes each week). Mainly I let go and let God be in charge and I am enjoying every moment of every day living life to the fullest!
Blessings to all!
- By Smithnojoke
- Posted June 25, 2009 at 11:53 pm
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Thank you all for sharing. I, too, have been in remission for 9 years. Had the hysterectomy, etc. the cancer started either in the tubes or ovaries and had spread to one spot on the abdominal wall. Had five rounds of taxol and carbo, second look surgery and three years later another exploratory with CA 125 at 37. Found an inflamed lymph node in the abdomen that was benign.
Now the CA 125 is 65 and am scheduled for CT scans. I feel like I have always felt for the last nine years. I have an assortment of GI tract problems--GERD, what my primary care doc thinks is IBS--and fatigue which over the years has been attributed to sleep apnea, depression, stress, anemia and hypothyroid. All these have been treated and I am still tired. My gyn onc thinks it is long term chemo side affects.
I haven't worried over the years, because I believe God is in control. He will get me through whatever is ahead. Don't feel guilty about surviving. We can't control life or death. Now I'm almost 58 and I wonder how much harder chemo could be at this age?
I guess all the media coverage of Farrah Fawcett's death has me rattled.Thanks for being there.
Chris
- By her911
- Posted June 26, 2009 at 5:34 pm
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there is new research at MDAnderson by Amil Sood
that indicated the presence of an enzyme, a precursor to the RNA called driver and drosher...
this is related to the survival rate of Ovarian Cancer
patients...the research demonstrates the varying
survival rates dependent upon these enzymes. We are all hoping for the magic "pill" , the PARP
inhibitor to work...OC is a dreadful disease and tests
the character of all involved...patient, family, friends.
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