My promised update, from Moli.

molimoli · January 2015

flyerette65 said:
So many beautiful women on this board!
You ladies are all beautiful, both inside and out. Such honesty, such poetry in what you all have written and also very inspirational. Stage 3A USPC after radical hysterectomy. Positive abdominal wash. I had 6 rounds of chemo and was then referred to the radiologist. I told my oncologist up front that I was not interested in doing radiation and after talking with the radiologist and having him tell me that the lymphocele I had was "probably cancer" and that I needed 35 external and 3 internal treatments, I pushed for a PET scan which showed no cancer so I totally opted out of radiation and I'm not sorry I did. Chemo really laid me low. Although I did not vomit I certainly wanted to and nothing I ate tasted good, but, as you all have said it was doable. I had to have hydration b/c I couldn't eat and drink like I needed to, I lost all my hair, treatment had to be stopped because I got pneumonia 3 times during treatment but I made it. I was scared to death, as we all are but we do what we must to save our lives so that we can be here for our children and grandchildren. My husband died when he was 50 and my kids were bereft (did I spell that correctly) when they found out I had cancer. I figured I owed it to them to fight the fight and rock the attitude. I had cute wigs and aside from the week after chemo I felt great! We never know how many "tomorrows" we are going to have, all we have is our todays so we need to LIVE and LOVE! Living and loving are verbs. I want to do everything on my bucket list starting tomorrow. I've had two men tell me I'm living my second childhood because I'm trying to live life to the fullest. Needless to say, they are no longer part of my life. I haven't got time for naysayers. After you have faced cancer and experienced what all of us here have, only then can you criticize the way I want to live the rest of my life. I'm going to go in a new direction in 2015. I'm going to yoga, pilates, zumba my way through the new year so get outta my way if you are going to bring me down. If, when I go back to my oncologist, I am told that I have a recurrence I don't know what I would do this time. Sometimes the cure is worse than the disease. I have seen several people fight with everything they have, do chemo for years, never grow their hair back and still they pass away. I've found out that because of chemo we have a higher risk for bladder cancer. I'm older, more exhausted and have my elderly mother who is dying from lobular carcinoma metastisis to her small intestine. to consider. I feel USPC will "get me" in the end. With the positive abdominal wash, it's too agressive for it not to recur. So make peace with God, peace with family and peace with yourselves. Only you know what is best for you and what you can tolerate. Peace, blessings and good health to all in 2015.

Barb

Yes Barb Live Large Now.

Hi Barb.

Sorry to hear of your mom's journey ,must be a tough - row -to hoe for you ,stay strong. Oh your kids no doubt awfully numbing for them.Don't forget to remember the hugs, give it often and tight,tight.tight. It puts a smile on heart's face. even while tears are waiting round the bend.

Thanks for a heart felt letter, You have covered your fears ,your feelings and your resolve in an absolutely beautiful way, Thank God you had a hunch and used your voice to say " NO " to " PROBABLY CANCER" Some nerve. wanting to give so much of that harsh potion on a PROBABLY. What was he going to treat at that time, since radiation is meant to be targeted treatment? His Bank account With a new balance at your expense, I suppose. They have the technology to find out ,therefore they must be made to investigate before they arrest anything in your/ our bodies.. We must be and remain vigilant and proactive in all aspect of our treatmemt, we gained that right the day we got this diagnosis along with this darn 'rest of life credit card.that we desperately keep extending at every recurrence / expiry date..thats what the recurrences are.

We will take deep breaths and run our race, thats what we aught to do. leave the nay sayers in the dust. Live It Up Quick ,Quick,Quick ,Thats what I am saying./doing.

Re; spelling, We all have bigger fish to fry ,than to be' english' police, no one is checking ever, I hope. That would have been me before Cancer gave my brain PONDERMENT to do [ thats not a word but I don't care ]

My morning wish is for showers of blessings upon all of us. nuff ,nuff love guys.

recurrence .

AWK · January 2015

molimoli said:
Yes Barb Live Large Now.
Hi Barb.

Sorry to hear of your mom's journey ,must be  a tough - row -to hoe for you ,stay strong. Oh your kids no doubt awfully numbing for them.Don't forget to remember the hugs, give it often and tight,tight.tight. It puts a smile on heart's face. even while tears are waiting round the bend.

Thanks for a heart felt letter, You have covered your fears ,your feelings and your resolve in an absolutely beautiful way, Thank God you had a hunch and used your voice to say  " NO " to " PROBABLY CANCER"    Some nerve. wanting to give so much of that harsh potion on a PROBABLY. What was he going to treat at that time, since radiation is meant to be targeted treatment? His Bank account With a new balance at your expense, I suppose. They have the technology to find out ,therefore they must be made to investigate before they arrest anything in your/ our bodies.. We must be and remain vigilant and proactive in all aspect of our treatmemt, we gained that right the day we got this diagnosis along with this darn 'rest of life credit card.that we desperately keep extending at every recurrence / expiry date..thats what the recurrences are.

We will take deep breaths and run our race, thats what we aught to do. leave the nay sayers in the dust. Live It Up Quick ,Quick,Quick ,Thats what I am saying./doing.

Re; spelling, We all have bigger fish to fry ,than to be' english' police, no one is checking ever, I hope. That would have been me before Cancer gave my brain PONDERMENT to do [ thats not a word but I don't care ]

My morning wish is for showers of blessings upon all of us.               nuff ,nuff love guys.

recurrence .

It is our individual journey; keeping you in my prayers.

Hi Moli, I was originally diagnosed stage IIIC UPSC in April 2013. Post surgery I had chemo, radiation and brachytherapy. At my first three month checkup five mets were found, all adjacent to organs including one on my heart. A second opinion had me at Stage IVa although my treatment regime wouldn't have changed. My mets are all spread out and inoperable and irradiatable. I underwent three rounds of Doxil and had continued progression. Now I am on an avastin regime and stable while we decide about next steps. I have given all of this a lot of thought and believe strongly that our treatment regimes and motives are deeply personal. This year, while undergoing treatments I have continued to work full time and like you am focused on making memories and living. I started riding horses again and doing things I enjoy but never made the time for. We have been traveling and doing things we always put off. My plan right now is to continue the fight with all of the resources I have available to me. The chemo wasn't fun but everything that happened was manageable, the radiation was pretty easy except for being tired. The more recent treatments are much easier to tolerate which is why I am pushing forward in all aspects of my life.

Keeping you in my prayers along with all of the sisters here. Anne

Abbycat2 · January 2015

AWK said:
It is our individual journey; keeping you in my prayers.
Hi Moli, I was originally diagnosed stage IIIC UPSC in April 2013. Post surgery I had chemo, radiation and brachytherapy. At my first three month checkup five mets were found, all adjacent to organs including one on my heart. A second opinion had me at Stage IVa although my treatment regime wouldn't have changed. My mets are all spread out and inoperable and irradiatable. I underwent three rounds of Doxil and had continued progression. Now I am on an avastin regime and stable while we decide about next steps. I have given all of this a lot of thought and believe strongly that our treatment regimes and motives are deeply personal. This year, while undergoing treatments I have continued to work full time and like you am focused on making memories and living. I started riding horses again and doing things I enjoy but never made the time for. We have been traveling and doing things we always put off. My plan right now is to continue the fight with all of the resources I have available to me. The chemo wasn't fun but everything that happened was manageable, the radiation was pretty easy except for being tired. The more recent treatments are much easier to tolerate which is why I am pushing forward in all aspects of my life.

Keeping you in my prayers along with all of the sisters here. Anne

You are confidants /friends I've not met in person

Thank you all for sharing your most personal thoughts and feelings without reservations here. Barb embrace your second childhood with gusto! With or without a cancer diagnosis, why not do so? To h_ll to the naysayers. And Moli, what can I possibly say to you that would convey my gratitude to you for your kind, gentle and loving words when I so needed support? I cried when I read your response to my post. Like you, Anne, I want to continue to fight as I am not ready to give up. I traveled to Alaska and the Galapogos archipelago in recent months and the experiences have renewed my soul. I have been devouring books about the Iditarod and now find myself wanting to be a volunteer in this great dog race. I don't care what it might cost nor am I bothered by the fact that as a Floridian my winter wardrobe is woefully inadequate for the brutal Alaskan winters. In short, I am grabbing life by the horns and hanging on for the best ride of my life!

My best to to each of you,

Warmly,

Cathy

molimoli · January 2015

Double Whammy said:
I get it - where you're coming from
and I admire your decision for no chemo. Just last night, I was at a meeting and the topic came up about how a friend of ours was doing. She has a recurrence of UPSC and is undergoing oral chemo and something else (doesn't matter). This is her third recurrence. She has had chemo infusions previously. I sat there dumfounded as others exclaimed how fabulous she was doing, how she has such a positive attitude, etc., etc. Well, I'm here to tell you she's tired, she has no appetite, she often feels like crap, organ function needs to be checked all the time, and she has many down moments, but what she projects is the attitude of doing great. Heck, she has her hair afterall! I was sitting next to my friend who is fighting a recurrence of kidney cancer and on oral chemo. She's tired, she's nauseated (somewhat controlled on meds), has lost 35 lbs., her thyroid has gone wonky, she has been in the hospital with pneumonia, she has been anemic, her organ function is checked and most of the time she's not down and out, but she feels not well all the time. And all of this is based on how they say they feel, not what havoc the treatments might be causing that can't be immediately seen. The medical profession considers this a good quality of life. And the public sees it this way as wel.

I don't know what I'd do if I had a recurrence of either my uterine cancer or my beast cancer or even if I grew a new one. I have given it thought often. At my age (67) there is a lot to consider.

Wishing you the best.

Suzanne

Programmed to not cry out loud.

Suzanne , The medical community programs people to accept ,not cry out loud and at all cost to your health,keep complaints inside. The non -medical healthy community don't really wan't to hear anything from people with pained bodies or mind.

Medical community ; " We are doing our best for you ", In fact sometines thats really the best they have., They will never say ' Our best sucks though.'neither do they want to be told.So we are expected to grin and bare it , while they hide life shattering side effects , Please disclose so one can make informed decision that's all we are asking, enough of the blind siding.

Non-medical community without pained bodies , They are dealing with overdue bills,disfunctional family issues or big worries about which is the best new investment they can put their abundance of money in to get even more ' Bundance' [not a dictionary word. but I don't care ]

In other words no one want's to really hear from sick people but sick people ,So " HELLO MY SISTERS HELLO "

Lets start crying out loud so the medical community stop being complacent with our care. although I am convinced that my doctors are on team Moli so far, for that I am grateful.

After all these years Uterine Cancer is still outsmarting doctors. Sad,very sad , the suffering continues as we learn how to hide our feelings.. Geezz!!

molimoli · January 2015

Abbycat2 said:
You are confidants /friends I've not met in person
Thank you all for sharing your most personal thoughts and feelings without reservations here. Barb embrace your second childhood with gusto! With or without a cancer diagnosis, why not do so? To h_ll to the naysayers. And Moli, what can I possibly say to you that would convey my gratitude to you for your kind, gentle and loving words when I so needed support? I cried when I read your response to my post. Like you, Anne, I want to continue to fight as I am not ready to give up. I traveled to Alaska and the Galapogos archipelago in recent months and the experiences have renewed my soul. I have been devouring books about the Iditarod and now find myself wanting to be a volunteer in this great dog race. I don't care what it might cost nor am I bothered by the fact that as a Floridian my winter wardrobe is woefully inadequate for the brutal Alaskan winters. In short, I am grabbing life by the horns and hanging on for the best ride of my life!

My best to to each of you,

Warmly,

Cathy

Done for you what you did for me Cathy. No problem

Cathy I am paying forward my sister,,I won't forget coming to this site as a tumble weed in high winds and how you all braced me up with your kind loving.encouraging words . Now I am emotionally strong , my feet are on a rock and that's where I intend to stay come what may. no more getting stuck in the clay for me.

Best ride sounds good but must it be in the cold, just sayin'

Enjoy life my sister, stay as well as possible.

molimoli · January 2015

AWK said:
It is our individual journey; keeping you in my prayers.
Hi Moli, I was originally diagnosed stage IIIC UPSC in April 2013. Post surgery I had chemo, radiation and brachytherapy. At my first three month checkup five mets were found, all adjacent to organs including one on my heart. A second opinion had me at Stage IVa although my treatment regime wouldn't have changed. My mets are all spread out and inoperable and irradiatable. I underwent three rounds of Doxil and had continued progression. Now I am on an avastin regime and stable while we decide about next steps. I have given all of this a lot of thought and believe strongly that our treatment regimes and motives are deeply personal. This year, while undergoing treatments I have continued to work full time and like you am focused on making memories and living. I started riding horses again and doing things I enjoy but never made the time for. We have been traveling and doing things we always put off. My plan right now is to continue the fight with all of the resources I have available to me. The chemo wasn't fun but everything that happened was manageable, the radiation was pretty easy except for being tired. The more recent treatments are much easier to tolerate which is why I am pushing forward in all aspects of my life.

Keeping you in my prayers along with all of the sisters here. Anne

Our Journey

Thanks for your prayers Anne. Sorry you had those troublesome mets, Giving thanks to our Creator that you have found a manageable plan to keep this thing at bay. Wonderful that you are making the time to do the things you like and enjoying family Yes the directions are all so very personal but the dialogue helps tremendously to open our eyes ,minds and hearts to the inside scenes of each other's journey, It educates and uplifts each of us as we struggle to do the Right thing for us..No doubt it also creates apprehension which causes us to ask more Questions of our selves and our health care team, which is a good thing .only then can we feel informed and empowered,therefore we mustn't shy away from the hard questions or controversial statements. we must continue to give our opinion and work through them ,both the pros and the cons. we are in this boat together so everyone's opinion is valued and appreciated.

We are all at UPSC /UTERINE CANCER COLLEGE by force.

Together we'll be the wind behind your back as you push forward. Stay safe. Bless you and yours.

Moli.

My promised update, from Moli.

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