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Fun beadgirl-hope you are feeling well

ccfighter
Posts: 476
Joined: Jan 2012

the boards have been quiet.  Thinking of you and hoping you are enjoying your family and the warm weather.  Hugs to you and to all the ladies dealing with gyn cancer.  Be well.

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

You're right cc, it has been quiet lately. I hope everyone is having a great summer. I just had a stoma revision surgery. Basically, it's like a bellybutton, I used to have an outie, now I have an innie. Hurt like crap, but it's behind me now!! Going to see the Rolling Stones in Nashville this week, still on my "I beat stage 4 cancer's butt" tour!!!

Take care all!!!!!!!!!!!

ccfighter
Posts: 476
Joined: Jan 2012

Enjoy the "tour" and may it last a long long lifetime.  Glad your surgery went well and it's behind you Now.  Hugs to you.  

funbeadgirl
Posts: 181
Joined: Jan 2009

oh my, I can't believe so much time has gone by! Thank you so much for thinking of me, yes, I'm doing okay and trying to enjoy summer...it's been cool here and I'm waiting for some warm weather to get in pool!

i stopped treatment May 1st, after the first cycle of taxotere in April, I was so sick and not really able to live my life, so I decided I'd rather have quality of life now. I've recovered pretty much from that, my hair is just starting to grow back, I rather like not having to deal with hair this summer! I'm planning on keeping it very short, I find it very freeing. I still find myself very tired in the afternoons but I just pace myself and I'm able to do mostly anything I want.

i am having physical therapy on shoulder where I had radiation, the muscles are very tight, so in order to avoid a frozen shoulder situation I'm having to stretch it out to keep range of motion. My leg issues continue since femur is a non union fracture, it's been two years since last surgery and bone graft and it's not healed yet. I'm sure that the rounds of chemo have not helped, I'm hoping that by stopping the chemo and walking in the water it will help bone to heal. I will always have some type of issue...so what I say!

the bottom line for me finally was this...am I living just to do treatments and not be able to live the way I want... or do I want to live my life the way I want and really live on my terms? The answer was crystal clear to me and I have not second guessed my decision or looked back. Now I spend couple days a week doing fun and meaningful things with my grandchildren. We go to lunch, they help me around my house and yard, we talk about the things in their life that matter, we laugh, we play around my yard blowing bubbles and rocking in my chair,we do volunteer work together and we even read the bible together...my 16 year old grand daughter has read bible cover to cover once already and is nearly finished for a second time...all on her own, she's an inspiration to me!  these are the things that I would not have been able to do had I continued taking the chemo and even if my life is shorter because I stopped, it will be worth it because I've created these wonderful memories and hopefully had some small impact on the lives of these precious children. It is my intent to go on living with as much passion and purpose as I can, let's face it no one has a guarantee for anything...that's why living in moment is so important! I take nothing for granted, I don't expect anything but appreciate everything.

my wish is for everyone of you dear friends here to find your own path and just enjoy what you can, I love to hear that you too are moving forward to enjoy life. I will never be NED but I will live my life the way I want and as cancer resides in me, then it must stay in its place and I will not allow it to get in my way. I make these choices while I can and I don't worry about tomorrow...it will take care of itself. Peace and happiness to you my friends. I will still stop in here once in awhile and let you know how I'm doing. Thank you for all your kind words of encouragement and hope, I pray that I've been able to impart to you the same. Stand firm and be strong! Funbeadgirl

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babe12
Posts: 103
Joined: Jul 2012

Funbeadgirl, I am wiping the tears from my eyes as I read your post. You have made the right choice, live your life on your terms, not treatment terms. You have chose to embrace life and live it to the fullest. I only hope I can be as brave as you. It sounds like you have had a wonderful time with your grandkids, and what precious memories you are making. Isn't it wonderful your granddaughter has read the bible almost twice! She does sound like an inspiration, but then the apple doesn't fall from the tree. You have been an inspiration to all of us on this board.

I hope you have a fantastic summer & are able to enjoy your pool soon!

You are in my thoughts and prayers,

Dana

ccfighter
Posts: 476
Joined: Jan 2012

Dana couldn't have said it better.  You are amazing.  I think of you often and hope the very best for you.  I am glad that you are feeling well and enjoying your kids and grandkids.  Hugs and healing thoughts for you.

funbeadgirl
Posts: 181
Joined: Jan 2009

just a quick update: I am having a PET scan this Friday. I saw my oncologist Monday and I told him I broke another rib and I started having pain in my lower back, he is concerned about disease progression since I stopped chemo in April. He's thinking he might send me for radiation to help stabilize bones and thus help with pain. I would do that but am well aware he might also recommend more chemo as well, I'll cross that bridge when I get to it.

my summer has been full of many wonderful things and some scary things as well. two weeks ago I went for my usual blood work, port flush and doc visit; they drew my labs and sent me to wait for doc in waiting room, well I started having chest pains, sweating profusely and couldn't catch my breath! I mentioned it to receptionist because I thought I'd get into see doc quicker...well, I did see him quicker, he came out to waiting room with two nurses, did my vitals, etc. and promptly sent me to ER! I drove myself there and was not about to allow them to call ambulance to take me across the street to hospital! I called a friend that lives very close and she took me to ER, then went to get my husband. They kept me overnight, ran every conceivable test and I knew my heart and lungs were okay but they insisted. At least now I know my cardiovascular system is fine. I really thought it was stress related and I told them so.  Will get results from scan next Thursday, I hate the waiting but in between the scan and results I can pretend everything is fine and go my merry way...of course protecting my sore rib and back.

im not ready for summer to end, I want to swim more and be outside. I wanted to start a walking program too, trying to get back to my 3 miles a day, but that will take some work.

i hope all of you ladies have been able to enjoy the summer and do some fun things as well. I'm also looking forward to a road trip to Georgia this November to visit some dear friends. As I always say; Stand a Firm!Cool

ccfighter
Posts: 476
Joined: Jan 2012

Funbeadgirl!

its so good to hear from you.  I'm sorry your back and rib are bothering you and I hope the doctors can do something to ease that discomfort.  It sounds like overall you are feeling well and enjoying your summer.   That is such great news.  I'm sure your grandkids have been enjoying the time they get to spend with you.  I think a walking program is an excellent idea.  I too am trying to get back to some good walking routine.  

I hope you get good news on your next scan.  The scare at your doctors office must have been terrifying.  I am well versed at panic attacks.  They are one of the worst things I have ever experienced in my life, which is really saying something since I have been through quite a bit.  I'm glad there was nothing wrong with your heart.  

You are one strong, brave woman.  Take good care of yourself and keep on enjoying this beautiful life.  Many hugs and healing thoughts.

annett
Posts: 45
Joined: Aug 2015

I also am glad you are doing well. I hope your petscan is good too! Thanks for the post  giving me information. It is really helpful and kind of you. Lovingly ,Annett

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

funbeadgirl I think you just taught us the tip to get doctors to move quickly - sweat, chest pains, and can't catch our breath!  Tongue Out  That will teach the docs to keep us waiting!  ha!

Seriously, it is wonderful to hear your spirit!  I hope they can help you with the pain. You are an inspiration.

funbeadgirl
Posts: 181
Joined: Jan 2009

Thank you CC , Annette and No a Time! Yeah I guess those are the magic words to get attention quicker!

my situation changes day by day, I broke another rib so my pain is off the chart right now even with oxycodone and OxyContin, I will definitely have to address this with doc on Thursday.since I'm stage 4, and have refused chemo, I'm basically in palliative care now so I think they need to address my pain in a more serious manner. I also get PET results Thursday.

true to myself, I keep my head high, my hopes firm, my faith strong, I laugh every day, I reach out to a friend every day to visit with and just plain ole enjoy my life, living in the moment, it's all any of us have , right!?

ccfighter
Posts: 476
Joined: Jan 2012

Funbeadgirl,

i hope your pet scan results came back as good as to be expected.  Please make sure those doctors get your pain under control so you may continue to actively pursue all the joys of your life.  You truly are an amazing woman.  Hugs and wishes for peace and comfort.

ccfighter
Posts: 476
Joined: Jan 2012

Funbeadgirl,

how did your scan go?  Thinking of you.

 

hugs

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

Funbeadgirl, I am just enjoying life and dealing with the cancer and the damage. I have stopped all treatments except the ones that make me feel better. The type of Cancer you and I have is a mystery. I have turnover my medical records for research to future research on the P53 gene mutation, because vulvar melanomas and adenocarcinomas are so rare, much less is known about how they develop.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Andeoup, how thoughtful of you to consider those who will follow you.  It is a beautiful gesture.  Thank you.

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

We women must stick together.  

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

Thank you. My doctor has seen my type of Cancer of the Vulvar 3 times over his life time. He is over 55 years of age. He is with a huge research hospital. I found him after my 2nd surgery. I feel like I am in good hands finally. Bad medical care made my circumstances worse. I have learned so much through trial and error. I was diagnosed with metastasized mucinous adenocarcinoma of the vulva in 2012. I have an unknown primary Cancer.  Possible site: not limited to breast, gastrointestinal, pancreatico-biliary, urinary bladder origin.  Damage includes: Femoral mono-neuropathy, lower quadrant lymphedema, scarring of SI joint and sciacticas and pelvis, upper thighs, groin and buttocks. I have a pain management doctor helping me and I have had 16 nerve blocks since May 2015. It is helping. shots hurt but the pain is unbearable. Currently I have a new site that is being watched for cancer. Each day I embrace life. 

ccfighter
Posts: 476
Joined: Jan 2012

Andeuope,

it sounds like you have had a lot to deal with.  Thank you for sharing and for helping the cause with your contribution to research.  I also opted into a trial where I donated blood and biopsies and medical records for research.  I have no idea what they are doing with it but I hope it helps someone someday.  Keep enjoying each day and on treatment that makes you feel better.  Hugs.

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I believe most of us are leading and challeging the medical professionals. We must stick together. All cancers are horrible. But ours is so personal because it takes our physical sexual attributes away and damages our external female organs much like breast cancer but worse in that we are danaged where we sit and our mobility is shaken. We are not receiving tbe same care or respect that our pink ribbon ladies do. Most women have no idea about this type of cancer. Thery spend so much time worry about breast and they forget that cancer affects all organs.

I spend much time saying to women no I do have breast cancer. Thier natural assumption is that I have breast cancer. The other misconception is because I do look like a person who the media constantly shows with cancer. That I do not look like I have cancer. I say to them what does cancer look like?

I chose not to have a treat whereby my cancer does not respond. I choose to live the best way I can while I am alive. Most people have a false since of knowledge. Chemo and radiation is not the cure all to all cancers. 

My Dad had a unknown primary cancer and used these treatment and he died anyway. So I choose to live and not be a victim to harsh treatments that will not treat my particular cancer.  I cared for him for 10 years until his death. Cancer attack every part of his being.

 

 

 

 

 

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I think they put the research medical records in a database and pull from them to assist people with the same or similar cancers.

annett
Posts: 45
Joined: Aug 2015

Smile

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I am sorry for not responding to each of you. I read each of your post and I think about each of you and your journey. Please know that. I am not always the best communicator. Since May 6, 2014, I have been enjoying a wonderful gift. My sweet daughter in law who has severe Crohn's disease gave birth to my first and only grandson. I spend several days a week visiting and loving baby Lucas. God has granted me a gift that is priceless. My husband in charge of driving us and helping do the things I can not. But my heart is so full of love and joy. This makes me fight harder. I have been unble to lift baby Lucas since he was 4 months old my legs collaspe. But I am determine to always have my visits. He is now 17 months old and so sweet. :)  

annett
Posts: 45
Joined: Aug 2015

Hello Andeoup you are such a trooper! It is truly an unselfish act for you to help the future cancer victims. I am sorry you have this in your life. God willing maybe things will get better for you. I too have vulvar cancer but the one that is more common than yours. I have found that vulvar cancer is rare but a lot of ladies give light at the end of the tunnel. Hope your day is good today! Prayers, Hugs, and Blessings, Annett

funbeadgirl
Posts: 181
Joined: Jan 2009

Well ladies, since my last visit here I have broken another rib and have already had 5 radiation treatments, I will have 5 more next week. They have also upped pain medication until the pain subsides from radiation. My PETscan showed a new mass in C3 area, which doc did not seem too concerned about, a new tumor in thoracic spine, but rest of previous tumors showed no remarkable change...so i guess stopping the chemo really had no effect on the disease. Good to know. The way it stands now is I will finish my treatments, then see oncologist in 4 weeks.

In the mean time I will get back to enjoying my life and get back to swimming, two broken ribs have kept me immobile for last two weeks.

as I read through everyone's postings, I can see that we all are affected in the same way, we also are fighters, having much to live for and desire to build ourselves up by building up others. I guess that is what good friendship truly is, the desire to help others by helping ourselves, sort of setting a pattern of hope to guide us through the seas of uncertainty . We will all have times of despair where we feel we can't go on anymore, but we will also feel as though our souls can soar the highest of heights with a renewed sense of vigor. In all reality, it's that we must learn how to ride those waves that take us up and down and tether us about, remembering that we have the strength to hang on . Presently I am taking my life in about 12 hour segments, basically floating along and do my best every day. we all have great abilities inside of us to endure and pursue, my best wishes to all of you ladies that continue to fight the battle.

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I send to you Love and Hugs. Many days are so uncertain. You focus on what makes you feel better. Put you first.

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

Thank you Annett. I am truly honored to know each of you....

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

Each if us and our cancer are special and rare. We all are rare jewels and we have a mission to educate and receive better and proactive care. Proactive care and knowledge will go a long way. 

Andeoup's picture
Andeoup
Posts: 29
Joined: Apr 2013

I located this fascinating article that was published on April 2015. It describes all Vulva cancer types.  It is really helpful for new and old members. The article was on Researchgate.com and reseach article is called: Vulvar Cancer for Dermatologist. What I learned is that my metastasized mucinous adenocarcinoma is a combination of Aprocine adneocarcinoma (AA) breast-like AA and Andenoid cystic carcinoma (ACC) of the Bartholin gland. My other research on sweat gland cancer, which is what my current doctor thinks it is, reports world wide literature only 38 cases as of 2013.

Very interesting...

You can save it as  PDF file. 

I am always searching for new research and better care. I had no idea in the beginning of my battle. 

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