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I Was Just Thinking.

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

As I sit here having my coffee I was thinking of all I had on my to do list for today..  One thing - hair appointments for the boys and I.  Then I thought hair appointments.  Something most people do every 6-8 weeks... Something I did not do for 7 months...  Now my hair grows like a weed.  I have to go every 6 weeks.  I am approaching my one year anniversary from my last chemo treatment(June 25th).  It has only been a year but it seems like it was so long ago..    

 Is it like that for anybody else?  I think back to when this all started. I had this huge scar on my tummy..now the scar is so light you can barely see it.  The 3 scars from the chest port and I p port are very light also.  My eyelashes well they are pissing me off.  They came in beautiful and long..then fell out.  Lol.  One day my friend commented on how nice they were and I kid you not they started falling out the next day.  They come in..They fall out.  Is this happening to anybody else.  My regular doc said it was probably hormoan(or lack there of) related.  I always have eyelashes but they are short...  I am not complaining..  I will take what I can get...

 I am done rambling...this post is all over the place I know......it is just my thoughts.  

What is running through your mind right now?  Besides the fact you think I am bat **** crazy for my crazy all over the place.  LMA O..

I hope you all have a fantastic weekend...  It"s funny.  When it comes to my cancer, i turn to all of you before friends i have known for years.  We all have a bond.  :-)   We have never met but we  are friends.  We totally get what each other are going through.  Thank you for being my friend.

Alexandra you will be an hour from me when you come to your reunion in the Fall.  We MUST  get together.  And Pam  we have to do lunch and shopping this summer....

M

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

Hey Eileen, Happy Saturday! I am drinking my morning coffee too.

I just dropped my husband off at the airport; he is going to Vancouver for a week for work. Which means a week of peace and quiet and not having to cook. Yay! The weather is gorgeous. Maybe I'll go to Talbots shopping for summer dresses or drive to Niagara Falls and hang out there.

I have not yet booked my plane ticket or hotel for the re-union. But I am aiming at August 29th. I will definitely look you up when I'm in Boston.

I am a bit behind you; my hair is very short and I only trimmed it once. I don't have hysterectomy or port scars anymore, but my giant tummy tuck scar is still bright pink, I use Bio Oil on it twice a day. I will wait for a few more months and then cover it up with a tattoo (some kind of flowers, I think).

Yesterday at work I noticed that a collegue was MIA for a couple of weeks and there was a temp sitting at her desk. I asked another collegue about her, she lowered her voice to a whisper and said "She has what you have". "Ovarian?" "Yes". There are maybe 20-25 women in our office. What are the chances? Apparently this lady has completely shut down, doesn't respond to phone calls / emails; FedEx'ed her laptop in instead of dropping it off. We are not friends, just co-workers; I would like to somehow support her, but I don't want to be annoying and violate her privacy. I don't have her home phone number or email; I sent her linkedin invite with my phone #, but she didn't respond. Should I just leave her alone?

Have a great week-end everybody!

 

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

I rarely discuss thoughts like this with anyone else but this group.  How could other's possible understand if they haven't been through it.  Everyone here has been so kind and patient with my crazy questions. But knowing the answers took all the fear out of the process because I knew exactly what to expect thanks to all of you.  Just 5 weeks from my last treatment and hoping my hair will eventually grow fast like yours.  I want my long  red hair back, not this fine gray fuzz I have now.

 
Pamela
Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

In a couple of months you will have a decent amount of hair that you could dye red if you want.

I have a 3-tone long wig that kinda looks like your old hair, I only tried on a few times and never wore outside. Do you want it? I actually bought it before cancer just for dress-up.

Hearty Pioneer's picture
Hearty Pioneer
Posts: 126
Joined: Apr 2013

Eileen,

I am almost to my year anniversary date of finishing chemo (July 24).  I have cut my hair twice this year.  The first stuff that came in was gross, fuzzy and a weird texture, it had to go! I do have eyelashes, but they are much thinner than before.  My scars are still pink, but my body scars easily. Still dealing with cronic constipation from the IP chemo.

My mind in mainly focused on my double mastectomy, scheduled for June 25.  2 hours for the mastectomy and 15 hours for the DIEP reconstruction, plus repair of two hernias. They are going to use mesh to repair the hernias (is one mesh better than another??). The hospital stay is 3 to 5 days depending on blood flow to the tissue. 

I have been thinking, that having cancer is like being on the Titanic. You know you are going down, but do you get on a life boat and make it back to shore (Molly Brown)? Or do you go down like the captain with the ship? Or maybe you are like the wireless telegraph operator, Harold Bride. Where you work at your station till the last minute, get swept into the water by collapsible life boat B, pulled underneath the overturned craft, then swim out and cling to the overturned lifeboat all through the night until rescued at dawn? 2207 lives on board the Titanic and 705 survived rescued by the Carpathia. (My wish to be one of the 705 that make it to the Carpathia.)

 

I know we all die, but with the diagnosis of ovarian cancer, that reality comes closer. For me hangs around the edges of my mind, some days closer and some days futher away, but always there.  God is good, life is precious, and relationships are dear. 

Here is to living life to it's fullest and making the best of each day! (Hanging on for the Carpathia!!)

Amy

lovesanimals's picture
lovesanimals
Posts: 1227
Joined: Sep 2011

Like all of you, I love ths board.  I can say anything here, knowing that you all will understand and not judge.  My last chemo session was on March 24, 2011, which means I've been gratefully NED (no evidence of disease) for two years and almost three months so far.  My hair came back fairly quickly but I noticed it is more fine and falls out easily.  Same with my eyelashes.  I have this bad habit of pulling on them when I'm anxious or bored and they come out too easily.  Luckily they grow back quickly.

This may sound weird but whenever we drive pass the hospital I was in for my surgery, I get a very good feeling and I always feel good when I think about my nine-day stay there in October 2010 because they saved my life and all of the staff were really good to me.

Like Amy, the reality of death hangs around the edges of my mind.  After all this time, there are moments when I still think to myself, "Wow, I'm actually one of those people who have had cancer!"

Like you, I don't take anything for granted and am so happy for every day.

Kelly

lovesanimals's picture
lovesanimals
Posts: 1227
Joined: Sep 2011

Regarding your co-worker who has ovarian cancer, I would try to make it known to her that you are available if she needs to talk and then let her come to you, if she chooses.  You've already reached out through Linkedlin (spelling?).  If someone in the office has her home phone number or cell, maybe you could ask them to give her your number.  Beyond that, I don't think there's much else you can do.

Kelly

poopergirl14052's picture
poopergirl14052
Posts: 1148
Joined: Nov 2010

I try to keep busy and forget about cancer for a while. I go shopping , to movies etc...people ask me " what kind of cancer do have?" I am pretty open about my illness and I share info..many people assume I have breast cancer..why I don't know. I tell them there is no test for ovarian and many ladies think a Pap smear would be enough..I say NO! I did the Relay last night and I made it around the track. Somehow you can't get away from cancer as it is everywhere. Gong rot Pet/ct Monday ..hopefully a break...some how I think I will need more chemo...not to be negative but I feel cancer is still there..hop not. Oh we'll, my mind is all over too..have a nice week-end and spoil your hubby's ..val

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

Can I ask why you are having the BMX? Are you BRCA positive like me? I also have a large ventral hernia that needs to be repaired but I'm too chickenshit to have another surgery. I wish all the best with your upcoming surgery. It sounds like a huge deal. I hope you'll come through it with flying colors!

Susan

Hearty Pioneer's picture
Hearty Pioneer
Posts: 126
Joined: Apr 2013

2001 I had two cancerous lumps removed from my right breast. 2012 I had ovarian cancer.  Also, I am BRCA 1 +. So, to prevent any more bouts with cancer I am having the double mastectomy. Thank you for the support, I am very nervous!

Lwoolsgrove
Posts: 7
Joined: Apr 2013

I had a double mastectomy four years to the date of yours.  You will get through this, that is a promise.  Keep holding on!

 

my thoughts are with you,

 

Lisa

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

it kind of reminds of a virtual coffee klatch.

It is nice to speak openly about our feelings in a relaxed manner.  I have not seen postings like this before.  It is truly like a "girls" get-together.  Maybe we ought to try this every Saturday. 

I am upbeat most of the time although cancer is now a part of my life forever.  I do find, however, that it is difficult to look beyond the brick wall of ovarian cancer's probabliities.  This disease forces us to face our mortality.  I am tired of people telling me, "we're all going to die."

Eileen and Pamela hit the nail on the head when they said they turn to this board before friends.  I don't know how I would get through this without all of you wonderful ladies.  And to use Amy's analogy I feel this board is my lifeboat.

Like Val, I use shopping as a diversion.  I have not gone out shopping for a couple of months but the internet is always handy.  Lately I have been using my Kindle to shop.  I don't even need to get out of bed.  Maybe not such a great idea, but a helluva lot of fun.

PS

Val, I wish you the very best and hope you get a much-deserved break. 

Alexandra, you look ravishing as a blond, just saying. 

     

2timothy1 7's picture
2timothy1 7
Posts: 332
Joined: Jan 2012

Karen 

lim tired  of people saying " we are all gonna die" too. Get that a lot. I suppose it's their way of dealing with me when I talk about this disease. they can't possibly grasp what we are going through. 

I am a Christian and believe Jesus will be waiting for me in heaven but the unknown is still a scary thing. Just praying for peace during that time.

yes we all need a diversion. I like to work in the garden this time of year. Also been trying to memorize a verse each week to help take my mind off things. This week is Romans 8:38,39.

 

scatsm's picture
scatsm
Posts: 235
Joined: Apr 2013

I already appreciate all the feedback/info/openness I see on this forum. I am 15 months out from chemo for ovarian but only 5 months from my BMX for triple positive breast cancer. My every three week Herceptin infusion, which is mostly painless, still reminds me regularly that I am a cancer patient. Ovarian cancer is what scares me and I seem to only feel ok when I've just had the CA125 and I'm ok. The one time, so far, that it went up, I spent 3 months worrying. Most of my family and friends just assume I'm fine. My sisterrr ecently told me that I talk about cancer too much. Sigh, I get it that it's not on her radar like it is on mine, but really?

Susan

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

Amy, keeping my fingers crossed for your BMX + DIEP. A few months ago I wrote something like "do what's right for you" about reconstruction, because it is the politically correct thing to say. I would have chosen reconstruction at any cost. Once it all heals you're going to look awesome top to bottom and have your peace of mind too.

I normally don't think about existential aspects of death. It will happen when it happens and there is not much I can do about it. Why worry? I only deal with the technical side: living will, financial will, stocking up on painkillers. 

When I had one of those whiny "I'm gonna die" moments Mr. Sensitive said "Ancient people only lived 35 years on average. You are already 10 years overdue". No offense to cavemen I draw the line at "Paleo diet". And he is 5 years older than I am.

By the way I got another Talbot's wrap dress today. Cancer or no cancer the girl needs to look good. Worst case scenario I will wear it to my viewing.

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

I NEVER know how to be brief and succinct.  

I had long hair past my shoulders when I was diagnosed in 2007 and now have been bald twice so far.  I kept is short the first time because I just didn't have the patience to get it past that over the ears akward point - and honestly because I did not think I would make it off of chemo as long as I did. Now I keep it short because my husband likes it and, well, because it is eazy peazy! But yes hair cuts have become a bit more important.  I can go from "Its too short" to thinking it looks "great" to "OMG" to "hey this is not so bad" to "ok it is REALLY time to get a hair cut" in the span of about a week!

I always had good eyelashes and over the top high maintenance eyebrows!  My eyelashes came back in pretty good but eyebrows are not quite the same.  In fact now I fill in areas that never grew back.  I have friends (not cancer friends) who have done the semi permanent lashes and they look great!  My lashes are a bit thinner again since I have been on Doxil and I keep thinking I might try the artificial but no one really notices they are thinner - and you and I and pretty much everyone else reading this have learned - IT IS ONLY HAIR!

Glad you are doing well - and keep on rambling!

Robyn

 

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

All during my treatment I pushed the end of life discussion out of my head and just focused on the task at hand, getting through chemo.  But now that is it done, it keeps creeping into my thoughts.  Will I ever use all the anti aging products I bought? Will I have a chance to wear all the cute clothes I bought in a smaller size post surgery but pre chemo/steroids?  Will I die before my much older husband and if I do who will take care of him? Should I find a cause, solve world hunger, hug a tree? My current life while recovering from chemo, consists of watching way too much TV, reading, playing mindless computer games and having coffee/lunch with friends. I have accomplished more than I ever thought I would in life, but is it enough? I had a bit of success during my career, so my life hasn't been a total waste. I don't have a bucket list, I have done what I wanted to do (or I am too complacent to want to do anything.) I don't want to travel anywhere I have done enough of that already.  I don't have children or grandchildren to fawn over, no other family except my husband to distract me. Part of me wants to sit on the Lanai and watch the birds and wildlife in the back yard all day, the other half keeps thinking I should do more but I don't know what.  I considered volunteering but I am not comfortable around older people and children  If I worked at a pet shelter I would take all the animals to my house and become the crazy pet lady! I know volunteering is the key but I just have not found the perfect fit. I live in a rural area so the opportunities are less than in a city. I need a distraction!

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

I can not tell you how similar that is to all the things I have pondered over the past few years.  Mind juggling of the here and now decisions and the future planning decisions.  I question everything I have done - or should have done and what I am supposed to do in the future.  Should it be different because of what I have - or am going through?  And 6 years later I am still here - and still having the same conversation with myself!  

Like my sister (10 year breast cancer survivor) said:  "We are all going to die of something its just that some of us have more information than others."  So what are we supposed to do with that information?  I mean any of us could be hit by a bus tomorrow!  

I have gone back to work full time and have a pretty time consuming hobby - so I am busy - but still have all the same thoughts as you.  I try to not let it rule my behavior or drastically change decisions that I have to make. But its hard.  

If you are a dog and cat person, what about fostering?  Do they have that where you are?  

I don't have any real answers - but for what it's worth - just know you are not alone with what you are thinking!

kikz's picture
kikz
Posts: 1267
Joined: Jun 2010

where you are coming from Pamela.  When I finished treatment I felt like I needed to do something big or exciting.  I ended up living my life as I had before cancer except I had retired from my job.  I think of volunteering but don't want to commit to anything.  I like the freedom I have even though I don't do much.  I am trying to get back to remission again.  I am thinking the same thoughts as last time; I should travel, work on my bucket list, make the most of the time I have.  But I am sure that once in remission (please God) I will settle back into my mundane life.

Karen

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

 

 

 

 

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

So true for me too!  My husband has asked me about it and I said

"I just want to get up every day and try to do what I would have normally done."  

There is SO nothing wrong with "mundane!"  Bring it on!

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I think of things that I should do while I can but I am pulled to just enjoy a day at home. I did give up my job. Chemo made me tired and I didnt feel very reliable. And then I needed to be on disability so I would soon be elegible for Medicare if something happened to my husbands insurance.

I recently signed up to volunteer a couple places and wouldnt you know I got a bowel obstruction the week I was supposed to start both places!

I am BRCA 2 pos also so I had PBM also. I just did the implants but the surgery was really not bad.I know there is a lot more involved with the DIEP.

Funny how we are all so much alike.

 

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