Thursday, July 29, 2010

47. what its like - epic post - pictures at the end.

today has been an emotional day. i am in quite a bit of pain from my last fill 2 days ago. i didn't take anything for it because i thought i was going to be babysitting. i didn't call them to find out if i was because i was hoping i wouldn't have too. they never called to confirm or let me know i wasn't so i popped in a movie and cried.

experiencing a low level of pain all day takes its toll. i am not normally a weepy person. i think this process is starting to take its toll on me and i know i have been putting on my game face for the past 4 months. i know there are emotions to deal with, but i think subconsciously, i am holding off until i am complete with my final exchange.

i find myself thinking about different things and i am surprised. it's strange that i won't (or most likely won't) get breast cancer. i've lived my entire teen and adult life figuring i would get it. it's almost scary that i won't get it because breast cancer is all i've known and i had braced myself for it. but, it's exciting to hope that i will live to be an old lady.

i am starting to think about exchange surgery. there are fears that go along with it. i have fears that i won't be satisfied, or that my implants will flip around in my body. i mention the latter because my left expander has rotated counter clockwise quite a bit. the port used to be located at the 12 o'clock postion in my left areola, and is now located at the 9 o'clock position, just outside of my areola.

i am glad my fills are now spaced 4 weeks apart. i think the end is going to be difficult, and i have to prepare myself for that. the expanders are digging into my ribs, and when i get up from a laying down or reclining position and inspect the foobies, i have marks on my chest like i am wearing a bra...but i'm not wearing one! it also feels like i have the too tight bra on again that i experienced the first few weeks post surgery.

i hope my body will adjust quickly to this new increase in size. i have almost been set back to the point that it is difficult to open my pill containers, so i have transferred them to the easy off lids again at the pharmacy.

this process is also taking it's financial toll. i tried to go back to my regular job last week as a cosmetic merchandiser, but i couldn't handle the demanding hours, long travel times, and moderate lifting. i had to disclose my medical situation to my company and apologise for not being able to be dependable during our busy time. fortunately, they understood. hopefully, they won't replace me for this contract, but instead, lighten my load and keep me close to home.

i am currently relying on the government for assistance, but all they offer is $36.00 per month for living expenses after my rent. that doesn't even cover my monthly hydro bill, let alone groceries. i have been doing a bit of babysitting on the side to make a bit of extra cash to make ends meet, but i am starting to fall behind and want for certain things like fresh vegetables. i have gone to the food bank twice now and it's not a fun place to go...plus they don't cater to my lifestyle of whole foods and high intake of fruits and vegetables.

fortunately, the government assistance covers all my extra medical needs, like prescriptions, and travel reimbursements to appointments. i asked yesterday about a clothing allowance since i am starting to outgrow all my shirts and of course bras, and they said they would cover that.

my grandparents have also been really supportive by giving me a $100.00 allowance each month to help out, and they have me over for dinner often. oma also dropped of a delicious potato salad the other day, and after my appointment on tuesday which they took me to, they took me out to dinner.

things are really difficult, but i also see that God has helped me make all my ends meet even when things have been tight and felt desperate. i just wanted to mention that as a single person, mastectomy does take a financial toll and you need to be prepared for this. you need to ask for help. you need to rely on resources that are available. you need to financially prepare before hand and try to get a bit of savings going into it.

if you get stuck, don't be afraid to ask for help. i live in Canada, and i have received support from several local churches where i live, the food bank, and the YMCA. if i hadn't asked, i would have no electricity, and at times, no food. the united way and the salvation army has paid for my hydro for the past 6 months. i also received grocery vouchers from the catholic church and the YMCA helped me partially furnish my apartment making sure i had a bed in my spare room leading up to surgery in case i needed family to stay with me. (if you read my first or second post, you will see why i was in financial crisis going into my surgery.)

wow...the past 2 years have been the toughest 2 years of my life - except for the year and a few years after when my mom died. i am really happy that i am over most of the hurdles i have been trying to overcome. i really had too much to deal with and wonder how i managed.

i am in a good place now, and despite the pain and tough day emotionally, i can honestly say, i am happy. this is something i have noticed recently in the past few months, and not something i have ever been able to say and experience before. life is good.

i want to share my procedure with you from this past tuesday. my best friend elaine met up with me and my grandparents and accompanied me to my appointment. i brought my professional camera along and she expertly took pictures and they turned out fantastic.

she remarked at how accommodating my plastic surgeon was and also how friendly the nurse and 2 residents were. i feel blessed to have come in contact with such great people who are so genuine and interested. i would like to dedicate a post to my plastic surgeon at some point because he has made this whole journey more enjoyable than not. i actually look forward to my expansions and don't experience any anxiety leading up to them. i will leave that post till after my final surgery though when we are both happy with my results and i can share more information about him.

on to the pictures!


this is me in the day surgery room about to disrobe from the waist up. the foobs are already looking huge, but wait and see how much bigger they get after the fill!



i've got my lovely green hospital gown on. one size fits most. but not me. i drown in it!



my plastic surgeon feeling the expander. i assume he is checking to see how much "give" it still has and the position of it. i'll ask next time.



the mood is always light and sometimes humorous. i am sure i am laughing at a crack i made or a crack my best friend made. i am one of those people that cracks a whole lot of jokes under pressure. i am actually quite funny and laughter is the best medicine!



expansion is not all fun and games. ultimately, you do feel alone at times and lost and overwhelmed. i feel this picture captures some of that. i sometimes find a place outside of myself to get through it. on a different note: look at those rock hard foobs! they don't move or get lost in the armpits. they stay right where they are, even lying down.

i also wore my army boots, because i wanted to be tough girl. i had a feeling that this expansion was going to be harder than the others and geared myself up for it that morning. i was right.



the tool in the p.s.'s hand is a magnet used to locate the port where the needle will be inserted to fill the expander. the expander has shifted since my last visit, so we were surprised to find the port in a new location.



locating the port on the right side.



both ports are marked with an 'x'. the marker doesn't wash off easily and is often there for a week or so. a bit annoying because you can see the marker on my right breast when i am wearing a tank top.



the resident is sterilizing the entire breast area. the p.s. says this isn't necessary, but it is hospital policy. the p.s. says you really only need to sterilize the injection sites, but rules are rules. i like that he follows policy even though the stuff is cold and drips into my hair.



as you can see by my face, this is painful. once the needles are in the port and they start filling, the feeling of pain goes away. i am grateful for the pain, because it means my body is regenerating sensation.



out of the 5 fills i have had, only one other time i had both of them filled at the same time. it doesn't matter to me either way, but i am a little nervous when a resident is assisting.



even though my team makes expansion as pleasant as possible, it is still a stressful experience. you can tell by looking at my neck that i am completely tensed up.



there were a total of 2 residents, one nurse, my p.s., my best friend elaine, and myself in the room. that was a total of 6 people. big party for a small room.



half of the saline has been injected into the expanders on both sides. 30 cc's to go. the process of injecting the saline into the expanders once the needles were inserted took no more than 60 seconds.



the areas are wiped down and a bit of pressure applied to prevent bleeding. the nurse then adds round dome band-aids. i will only wear the band-aids for a few hours and then removed them or else i will get hives. i have a sensitivity to adhesives in band-aids, surgical tape, and latex.



this happy smilely face says it all. i am happy to be done and very satisfied with my size. all my appointments end this way.



you can easily see the round dome band-aids.



they are so huge now they are starting to look funny. i look a little tired from the whole experience.



you can see how the band-aid shows with a tank-top. i had a button down top to go over this. it is officially too small for me after this appointment. most of my tops are.


i hope you found these photos enjoyable. i hope they are helpful and take away some of the mystery to those wondering how it's done. yes, some of it is painful and stressful, but in the end, it is worth it. i think if you have a good team of medical professionals like i do, it makes the whole experience worth while. i am glad that everyone has been so engaging and interested in what i have to say. my questions are always welcome and answered. i never feel like i am being rushed out the door. i've said it before and i will say it again; i feel like a human being. i am not treated like a number.

10 comments:

  1. Hey girl - I'm sorry I didn't see this post right away. I had no idea you were having such a hard time of things. Your attitude is always so upbeat and wonderful, your humor always shines through, it just didn't occur to me that times were so tough. I cried through parts of this blog entry. I cringed at the picture of the two large needles during fill time. I smiled at the pictures of you smiling. You are a beautiful human being. You're going through these tough times, but look at you, documenting your journey in a way that's better than any other that I've seen (and I've seen a lot!), doing what you can, to help remove the mystery for other BRCA sistahs who will be going through your type of reconstruction. During the FORCE/Chase campaign I got to know you a little bit, and I really liked you. After reading this blog post, and answering your private message, where we are trying to get some help for a mutual BRCA sister, I just want you to know that I'm kind of in awe of you. The world needs more Rachel's in it. I'm very proud to know you.

    Teri

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  2. Hi Rachel
    Thanks for letting us share in this experience. You are very brave. I had both my breasts removed due to Breast Cancer. I opted not to go through reconstruction surgery. I don't regret my decision in the least. Frankly I don't think I could have tolerated the pain.
    You look great!! I will keep on reading.... Love Alli XXoo

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  3. Wow, thank you for sharing those pictures! I hope to check out your blog more in detail soon, and I have added you to my blog roll. Sorry it took me so long!

    Best,
    Cara

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  4. Hey Rach
    I always wondered what the expansion process was like. I don't think I could handle having giant needles go in me.. I hate needles!! You are so lucky that the expanders stay in the same position when you lie down...mine, mainly my left goes right into my armpit and I hate it!! Things will get easier Rach, once the exchange is done you will be done this whole process, and on to the next chapter in your life. I am so glad you have had so much support, and people helping you from your community! It's soo very important. I go back in, in almost 3 weeks for my revision. A part of me is nervous, but also anxious to get it over with. Although, I did not have to face the expansion process I still feel I cannot put this officially behind me until this final surgery is done, and everything is looking the way it should. I am sure you understand. I look forward to the day where my foobs, and breast cancer will not pop up in every conversation!
    I found you photos soo very interesting! I think it's great that you post them to help other women about to face the same procedure.
    You are looking wonderful, and they look very natural!
    At first I was surprised to read you experienced pain from the injections, as I have no sensation. But, I am sure the pain comes from the needle going through the muscle area?? right?? since sensation is still there?
    Anyways, all the best. Try to keep your chin up!! You are sooo very brave, and have done so well thus far, try to keep up the positive attitude! I know it's hard, I have had my days too. But, things will get better I know it!

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  5. hey everyone. thanks for your uplifting comments. i have been so blessed lately with kind and moving words.

    @megan
    i think i am very lucky because i have lots of sensation returning. i will do a post at some point to show how much sensation i have regained and where i am numb. i'm a little nervous drawing on myself at this stage of the game.

    i also have hyper-sensation too. some areas of my nipples have feeling, but it is painful to the touch. it is definitely skin that hurts...and with the needle, i am experiencing skin pain but also muscle pain too. it is a burning kind of pain.

    i really think that expanders was the best choice for me. i like that i have a say in how big i would like to go. my ps is fantastic, not pressuring me to be a specific size. i definitely think i am where i want to be...but there is always the thought that i might like the next fill/over-fill too. he is super cool about it and says to go home and see how i feel after a few weeks. i don't have to decide right away.

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  6. Hi, I found your blog through browsing on a different blog's list. The pictures were amazing. I had that done over a year and a half ago, and I still tensed up when I saw those stupid needles. I can't believe I even made it through that. I had to have my sister with me every time to hold my hand. I'm terrified of needles, but by the time we started filling my expanders, needles were the least of my worries. I never had to have both sides filled at one time. Do you put numbing creme on your skin before you go? I did, and only one time I missed the port because it has shifted. It was so much more painful without the numbing creme. I had my reconstructive surgery - replacing expanders with silicone implants - a year ago. I've had a total of 3 reconstructive surgeries to get them looking just right. Then, I also had nipple reconstruction. Are those your real nipples??!! They look real and great! They couldn't save mine because my cancer was in the milk ducts. I haven't read all through your blog - so I'm not familiar with your story. What size of implants are you having put in? Mine are the largest implants they make - something like 900 CCs. But, my body is bigger than yours (thanks to steroids and chemo), so my chest could handle those. They had to fill my expanders to 950 CCs. I remember how painful that last fill was. The one thing that I was disappointed in was that I didn't look as big as I wanted after the surgery. I think it's because the bottom part of the implants really actually goes down to fill up the space in your chest, and they are under the muscle instead of just breast tissue (like during a normal boob job). But, all in all, I think mine look good - they are soft and not too foreign. I have a hard time finding a bra that will fit - most are made in kind of a cone shape, and the boobs aren't like that anymore. Where did you come up with the name "foob"? I'm surprised because that is what my kids called mine - my teenage son gave me a hug one day right after a fill and he said "your foobs (fake boobs) are hard!" It cracked me up! I named my blog Foobbabe's Cancer Journey.

    Good luck with your reconstruction surgery! I think you look fabulous!

    Take Care,
    Kara Herron
    http://www.foobbabe.blogspot.com/

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  7. hi kara.

    i look forward to checking out your blog. foob is a word i took from FORCE and YSC. it seems to be universal with all the women i have corresponded with around the world.

    i am very fortunate to not get breast cancer. i had a few abnormal finding through biopsies. combined with my family history (my mother died of breast cancer in her 30's) it was a no brainer for me to have the surgery prophylactically.

    yes, these are my original nipples. i was going to have my nipples removed when i first made my decision but after hearing of others satisfaction rates i decided to investigate the matter and decided that nipple sparing was the best choice for me.

    thank you so much for commenting on my blog. and thank you for the wonderful compliments.

    rach

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  8. so I finished reading the whole thing thus far- all I can say is wow, I had no idea. I wish you all the best with the foobs. I wish you all the best with your LIFE- it's very precious, and I am happy you are doing everything in your power to preserve yours. May all your hopes and dreams come true. You deserve it.

    Oh and btw I am glad I'm not the one who left you hanging with the confirmation of the babysitting. I will be sure to text you to give you the dates and times for this coming weekend.

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  9. hey cj. thanks again for your kind words and encouragement.

    the lack of confirmation for babysitting was a blessing. i was in no way, shape, or form capable to babysit that day. i was content to watch movies on the couch and work through some emotional stuff. i was hoping they wouldn't call to have me babysit. lol. i hope i didn't come off sounding negative about it in my blog post. not my intention.

    lots of love back at ya!

    rach

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  10. here is angela's experience with fills documented in her words and pictures as well:

    i think it's cool that we were like minded on the same day and posted the same theme.

    http://angelaslaten.blogspot.com/2010_07_01_archive.html

    rach

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