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new/fearful of vulvar CA

forease
Posts: 6
Joined: Sep 2014

Hello,

I have a lesion getting biopsied on Thursday and am very scared. Have read on internet and suspect verrucous carsinoma. I have a 3 y.o. daughter and had her very very late in life so my biggest fear/sadness right now is how short our time might be.  I am not a strong person in general (weary of battles in life) and never married/no partner.  I honestly don't know how to face what i see many of you facing.  I have read several posts today and hope that your words to each other can help me feel strong, but i am scared to my core.  

i'm so glad i found this site, but am just not sure i can face what likely lies ahead.  Thank you for letting me share my vulnerability.  I don't want my daughter to hear me cry.  

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Please calm down!  We ALL know how and what you are feeling.  Stress is not good at all.  Take a deep breath and wipe your tears.  None of us know when or how our lives end. You are getting way ahead of yourself.  There are MANY miles to go...you're just getting started.  It may not even be cancer.  I am not from this board{I'm Uterine}, but there are a lot of great people here that can tell you a lot more than I can.  Sometimes this board runs a little slow, but someone will be here soon to help.  Every thing will look better in the morning.  Get some rest, kiss your baby girl, and breath!  We are all here to help each other. Best, Debrajo

funbeadgirl
Posts: 181
Joined: Jan 2009

don't go past where your at...the best advice I ever got. Of course you are afraid of the uncertainty but as Debrajo said take a breath and take this one step at a time. The waiting is hard but you have your little 3 year old daughter to help distract you while you wait. Use every moment of your life to get the most out of it, don't let the thought of cancer control you, you can't control the cancer but you can control how you react. So much of what we do to ourselves with the 'what if' thoughts is wasted because it may never happen. I have been through so much myself in 6 years of vulvar cancer,when I thought I couldn't do one more chemo, I found a reason to continue, and I found 4 reasons...my grandkids, so that is what I think of during a hard time. I will never be cured at this point but I can and will enjoy a wonderful life and as bad as it gets, it's still a good life.

i know this is sort of corny but the first three letters in cancer are. C. A. N....you CAN do this but please take it one test, one doctor appointment , one day at a time. The stress we imagine today will sap you of your energy for tomorrow,  each day has it's own anxieties, no sense to borrow from tomorrow.

find someone you can talk to, or journal your feelings, it really does help to get it out. Your daughter can be your beacon of hope for you. I know your main concern is for your sweet little girl, so let that be what motivates you to keep going. You will find support here, many ladies have been where you are and they are inspiring to me, so I know I can keep going too. I believe in you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

First thing to do is to stay off the internet except for this site. There is a lot of scarey things out there it will make you crazy!

I know you are stronger than you think.  Have a child later in life and raising her on your own?  Wow - you are strong!  Let's take this a step at a time.  First things first, find out what the biopsy says.  It might be nothing or if it is something, you will want to work with a gynecological oncologist.  He/she will walk you through this on what is needed.

For now, take a breath.  Go and enjoy a treat with your daughter.

forease
Posts: 6
Joined: Sep 2014

I wanted to thank the three people who posted above.  I try and stay calm, and have been practicing a lot of compartmentalizing the last two days (not my strong suit), but it really has helped to hear your words.  (I'm also practicing "breathing" - hahaha). After spending a few hours in the morning dealing with some concerns i needed to take care of (insurance wise) I took your collective advice which was what was in my heart and consolidated the appts to one appt (the NP didn't feel i needed to see her before the gyn did) and so when they let me know that, I packed up some bags and my daughter and I went to the lake for the rest of the day.  It was fantastic.  She is so happy just digging/pouring/patting/and water fetching!  I just loved being in the moment.  I loved just being in the lake too.  

I thought especially about one post i'd read last night that said that the person's cancer couldn't be cured but you could live WITH it. (it is the beadgirl who wrote it) and I really tried to sit with that idea.  I'm not really good at that (sitting, or the idea), but i practiced.  

My nights are hard - my daughter fell asleep on the way home and awoke prematurely and so was in a crabby mood for a while, and then had had enough sleep to not want to sleep until quite late which is hard on me.  But, you are all SO right.  She is a GREAT distraction.  I do at times find my mind wandering to very very painful places but I try and stop and then focus again on her.  

So, tomorrow is the biopsy and then I guess it will take awhile for that to come back.  (? a week?). 

I feel my personality is not good for being a cancer survivor - I'm a pessimist, a pragmatist, kind of low self esteem too (not sure what that might mean for cancer ) so worry I can't do it.  However, your posts make me think I can try to do it.  

I would be willing to see a therapist if you thought they can help a person actually deal with not wanting to die (that's what makes me so upset) (yet) . .  but I'm not sure anything they could offer could help with that tough thing.   I know it's expensive but if it really could help I would try and pay for it (and the sitter).   

OK - so I'm going to continue practicing one step at a time (perhaps being a single mom is one reason i'm always planning for 8 steps down the road (and each of those steps has to have at least 2 back-up plans, and a change of clothes for accidents!  hahaha).

THank you all so very very much.  Your thoughts will be with me tomorrow and have helped me a lot tonight already - hopefully after the procedure my daughter and I can again do something really special - - high quality things that builds memories, and helps me feel the present is enough.  

funbeadgirl
Posts: 181
Joined: Jan 2009

I'm so proud of you that you did something proactive with doc appts! Then you did a fun thing with your daughter, that was a memory builder and something you can focus on during a hard time. It's like baby steps, you do one small thing at a time, you might stumble but you get back up and pretty soon you are walking and running, that is what this journey may be like for you.

first step is to have biopsy, then as painful as it is, you have to wait for the results, and yes a week sounds about right. In the mean time, build some more memories. Remember what I said in beginning?...don't go past where your at...sit with those words a bit, don't borrow tomorrows trouble and heap it on yourself today, it just will exhaust you.

as far as planning ahead for your daughter, that is understandable and very responsible but as a parent I'm sure you've learned that things don't always follow what you planned out, so plan the best you can. You would make those plans for her even if you did not have cancer.

as far as counseling...it is a beneficial thing to do, not everyone is comfortable with it so you have to decide if it's a right fit for you. if your insurance does not have a provision for that, then talk to your oncology nurse, nurses are a wealth of information that even docs don't have. If you will be going to cancer clinic, they usually have free programs for a variety if things, just ask about it. Then the American cancer society also has resources available to you. Just be the pragmatic person you are and search out what you need.

all these things are stepping stones, take one day at a time, and you will be able to do what you have to to step to the next thing...it is hard, but it is possible, tell yourself you can do it rather than you can't. Be your own cheerleader!

on a personal note...I went for chemo today and 10 minutes into the carboplatin I started having a reaction, so it had to be stopped and in 10 seconds the doc and 5 nurses were surrounding me, it was very scary, but I got through it.

please keep us posted as far as your results and what your plan will be, we are here to listen, support and give you a boost if you need it.

forease
Posts: 6
Joined: Sep 2014

Oh Beadgirl I am so glad you are ok after that ordeal.  Did you have someone with you?  I can't believe you are able to now write an email after all that.  You are very strong and I like your one step at a time approach.  

 

Yes, I have to wait for the results until sometime next week.  I wanted to see the doc for the results in person and have a friend with me to watch my daughter and drive us (I get worried if it's bad news maybe i shouldn't be driving us home (would be fine then if I got hurt, but not my little girl) . . . but the nurse called and said they have no appointments next week available so she'll call me when the results come in.  That feels like the worst option for me (hearing on the phone, alone, having to be strong for my daughter if it is bad news) but i guess they are full.  My primary doc has offered to relay the news to me if I want and I initially declined, but since the GYN doc can't see me I think I might do that.  

I have been taking a few more little "video" pictures on my camera of my daughter - partly because at night when my daughter is asleep - and thank goodness she went down better last night and tonight because we have both been not sleeping well (she is teething with molars) but i can watch a little video of her for distraction too - she's a pretty funny kid.  

And, I'm just taking your advice to keep making memories.  It feels very bitter sweet to me, but does have a motivational aspect to it for sure.  

I will wait for the results and also appreciate you thoughts on counseling - I had not heard of some of those options.  I think it might help me if i like the counselor.  

in the meantime, i will think of you.  It sounds as if they will have to try another medicine???  

You have been so helpful and I wish i knew more to help you after your very hard day.  Just know that "imitation is the greatest form of flattery" and I'm trying to imitate several of your wise approaches to things!!!  

PS - my daughter loves "beading" with the large macaroni (the long wide ones) so I had to laugh when i saw your codename.  She made a necklace with them last week (though ate a few "beads" finding the hard noodle stuff fun to chew on.  

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Forease, please let us know your results when you have them.  Until, spend more wonderful time with your daughter.  To "hear" you describe those moments is so fantastic!

 

forease
Posts: 6
Joined: Sep 2014

I just got the results not 20 minutes ago - - it is BENIGN.  (I emailed my mom and sister and now you).  

I was so worried my doctor gave me a prescription to fill for the worry because I was starting to loose it.  6 days is a long time to wait for a result.  I hope it's correct.  A family friend is going to talk to me - - the result was read by a resident doctor (a junior doctor?) so I'm going to see if that doctor friend thinks I should have another read.  But tonight, I'm so so grateful I will be able to sleep.

Today, not wanting to miss out, I took my daughter for her FIRST ice cream cone.  She chose chocolate !  And, asked for a cherry (like the hungry catepillar).  I took pictures.  It was delicious, but i've lost my taste for food with the worry.  

Now I feel badly that it looks benign for me and yet you lovely people who helped me are still facing such hard things.  I really felt I wouldn't be able to do any of it.  I thought my daughter would be better off just going to the guardians i have listed in my paperwork now . . . so she can be happy.  She is so young she probably would have little memory of our time together - even though for me, of course, these 3 years have been my most memorable.  

I need to go and make her dinner.  I am still thinking of Bead Girl and wondering what you'll do since you had a bad reaction to the medicine.  

I will still follow you for your courage.  And say extra wishes for you because I really truly needed support.  My sister is a cancer survivor - but has a husband/money/etc.  I'm not that lucky.  

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I am sooo happy for you Forease!!!  You have been  blessed  beyond belief!  Don't feel badly, dear!  We all have our own paths and journeys we must follow for whatever reason.  Now go make memories, enjoy life with your baby, and learn to live in and for the moment.  Tomorrow is not promised for ANY of us.  Don't be a stranger....we all need to hear good news like yours !!!  Best, Debrajo

forease
Posts: 6
Joined: Sep 2014

Debrajo - 

Your note was so loving.  I am amazed at your grace.  You and the other people here are in my thoughts daily - - truly!  

I will be getting more life insurance while my medical record now looks ok, and THEN i will ask for another person to look at the slides because it was a PA who read it and anyway - that's what a friend in insurance and a friend in medicine suggested I do.

In the meantime, I truly do think of you three throughout the day.  And, you are so correct - - tomorrow is not promised for anyone.  

I have to say, I really enjoyed cleaning my bathroom today.  I couldn't bear to do housework as my "bucket list".  

Thank you dear friends - 

ccfighter
Posts: 476
Joined: Jan 2012

Great news.  I'm so happy for you.  Hugs.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

congrats!!! go celebrate!!

Judemo
Posts: 107
Joined: Jun 2014

It's finally nice to see you NTFC!!!  Love your picture and your sign!

forease
Posts: 6
Joined: Sep 2014

Hi friends,

I wanted to share with you a webinair (and blog site) of a psychiatrist who was diagnosed with Stage IV lymphoma in her last months of residency and has some very supportive resources. I decided to sign up for her webinair on increasing resilience because I realise I don't feel very resilient and thought why not help that muscle get stronger (so to speak).  it is $35 but she is giving some free spots away.  

 

http://zenpsychiatry.com/how-to-cope-when-life-sucks/

 

I don't want to assume you folks need any help as you seemed so strong to me - but, since she's speaking from a place of being with cancer, I thought i'd pass it a long.  She also has a FREE download quickguide on how to help and not help ones self or friends with cancer.  

In the meantime, I am still recovering a bit from my fright, (and not sure I believe it) but am waiting to get more life insurance before anything is rechecked (!).  Meanwhile, my daughter and I have fed the ducks, and started going to a little french conversation lunch as it was a dream of mine to learn French.  

I still think of each of you and hope you are doing ok.  A special thought of caring and concern for bead girl after her medication for chemo didn't go well.  My daughter and I went to a bead shop and bought a green bead she fancied which in time we can make into a bracelet?/charm on one? . . . I was thinking of you bead girl when we were looking for a nice bead!

hugs

funbeadgirl
Posts: 181
Joined: Jan 2009

I am happy beyond what I can express for you forease! It is unlikely that even a resident doctor could read a pathology report wrongly, the pathology determines what the diagnosis is, however to ease your mind there is nothing wrong with having someone else look at it. I thank you from bottom of my heart for your kinds words and encouragement, I savor every word and prayer that is said in my behalf.

after my reaction to the carboplatin, I did have a rough week, but managed just fine and was able to have treatment the following week again. Yes, my husband goes with me to every chemo appointment. I will not be able to receive that particular drug ever again, or any other platinum based chemo either, so now I am being treated with just the one chemo drug, Gemzar and hopefully it will do the truck. My blood counts are still very low, so last time the dosage had to be decreased a bit. I don't get as intensely sick as my first round of chemo but I feel just a little off most of the time. My energy level is down but I have about four hours every day that I feel well enough to accomplish my usual tasks.

i am pleased you visited a bead shop with your daughter and created another special memory between you, keep doing those kind of things, you will be glad you did down the road. I am doing those kind of things with my grand kids now, my three year old grandson asked me today to build him a tent and put pillows in it, so tomorrow night when we have my sons family for dinner (which we have done every Monday night for 15 yrs) I will arrange a tent for him with pillows and we will crawl in and watch the Muppet movie!precious memories.

please try to renergize your life with the positive encouraging thoughts from all the wonderful ladies here, we all have a road to travel, with bumps along the way, whether or not you have cancer you will have a road with bumps too. none of us will do things perfectly, we will not always handle things with grace, we will get depressed, feel defeated, speak in an unkind way to someone...but in the end each of us women need to get back up and face the day again to try again. Be ready to forgive ourselves for those lapses and give ourselves the due recognition that we are human and doing our best, and most importantly that we support and lift up other women to do the same. 

I have found that a person usually lives up to what they say about themselves...so speak lovingly of yourself as you do to your daughter, afterall you are that precious child's mother, you are special to her and you are the best person to raise her. If you want her to have a positive fulfilled life you must teach her by example, show her what a strong positive woman looks like by being that for yourself, I know you can do that for her. 

my 15 yr. old grand daughter said to me the other day that I was the strongest person she knew...that just melted me on the inside! I have tried to be strong so as not to worry anyone but in the process I truly have become a strong person and now I've been able to show my dear grand daughter that strength, I hope that strength lives on in her and helps her to be strong. What I have endured will be worth it.

many happy thoughts and blessings to you forease and all my ' below the belt ' cancer sisters! Kathleen, thanks for checking on me, it reminded me to be more aware of checking the boards.

Judemo
Posts: 107
Joined: Jun 2014

Funbeadgirl, beautifully said!  Thank you for your beautiful words and encouragement!  

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