Tuesday, December 6, 2011

96. One year ago today...

Well...it's been 1 year since I completed my journey after having a double mastectomy and reconstruction. The day almost slipped away with out me realizing it. My mastectomy was on April 14, 2010, but reconstruction took 8 months and culminated in my final surgery December 6, 2010 and this is the day I chose to reflect upon what I went through. The day that felt I could move on with my life.

So much has happened in a year. I moved. I started school. I met tons of great new people. And I became a Nurse. I graduate in 4 months and will soon embark on a new career in the nursing profession. Life is so full of promise...not something I could say 2 years ago when my life was full of fear and anxiety over breast cancer. Fear over finding more lumps. Fear over having more biopsies. Fear of the results. Fear I wouldn't see the next 10 years. Fear that I would have to go through chemotherapy or radiation. Fear that I would leave my family behind. Fear that I would suffer the same fate as my mother.

I am so lucky, with the support of family, friends (shout out to my bestie: Elaine), organizations like Force and Bright Pink and my beloved BRCA bosom buddies like Michele, Teri, Shari, Megan, Claudia, Rebecca, and Robyn to name a few, and an outstanding Health Care Team that I was able to become empowered and take control of my future. Be in charge of my fate. Face my risk of breast cancer head on and make the empowering decision not only to have a PBM, but to share my experience and empower others along the way.

What a remarkable journey it has been. A journey that has shaped me into the person I am today. Strong. Vibrant. And full of Life! Baby, I'm a Firework!!!



Tuesday, September 13, 2011

95. Guest Post: David Haas

Human's Power Over Cancer

Humanity has an incredible ability to persevere through hard times and unfortunate situations. This ability is enhanced when positivity is displayed through all the people that one deals with.

Cancer survivor networks have helped thousands of cancer patients understand and cope with their condition. Moreover, it surrounds patients with other people in the same situation. There are groups for different kinds of cancer, such as colon cancer, breast cancer and skin cancer. There are even groups that are specially designed for patients with a rare cancer, like mesothelioma. Here are some specific reasons why cancer survivor networks are important.

It allows patients to exchange thoughts

Cancer patients are constantly thinking about their situation and need a support group to sort all the thoughts they have. Many patients have questions that they either are scared to ask a doctor about or forget to ask a doctor during their visit. These relaxed groups help patients, and even encourage patients, to write a list of questions that they want to ask the group and group leaders.

Some common topics during a session include
life expectancy questions, tips to help recover from chemotherapy, how to stay positive during treatment, and why it is so important to stay positive during treatment.

It helps patients develop a positive outlook and sense of well-being

Having talked about their condition, many patients leave each group session feeling
positive and ready to embrace the world during their battle with cancer.

This positive outlook and sense of well-being not only helps patients mentally, but also physically. Studies show that a positive outlook helps the body to relax, allowing the immune system and other important bodily functions to operate in an efficient manner.

It allows patients in remission share their experience

Cancer survivor networks are for patients in all stages of cancer, including remission. Therefore, remission patients can share their experience to other patients who are still going through treatment or have yet to go through treatment. A remission patient's uplifting and encouraging stories can help other patients to feel empowered and less anxious about their condition.

Conclusion

This link
http://www.cancer.org/Treatment/SupportProgramsServices/index connects patients with survivor networks. However, there are also online cancer survivor network programs to help patients who are confined to their house, though some people may say they are not as effective as in-person groups.

If you are going through cancer treatment, you should connect yourself to a survivor network. The friends you will meet and the information you will gain will be invaluable.

By: David Haas

Sunday, September 11, 2011

94. following up and my health

so i had my appointment with the genetics counselor a while back. here is what happened...

i found out our brca2 mutation of unknown significance had be down-graded to a status 4-5 which means through study, they consider this mutation harmless and not responsible for the cancers in my family.

this is good i suppose, but it doesn't put the puzzle pieces together for my family. it also does not qualify me for additional surveillance on top of my mastectomy.

in canada, post mastectomy follow up consists of annual clinical breast exams by my family doctor. no additional imaging. i asked about a base-line mri and they don't do that here either. should something "show up", the steps would be an ultra sound and then possible mri.

we went over my family tree again. there are still a lot of questions on my mother's father's side. this side has not been tested. there is still a lot of gaps in data but because most of the family past the 1st generation lives in holland and is not english speaking i have put all the digging around to get information on hold. it is too stressful and school takes up way too much time.

as for my health...i've been in reasonable good health through out the past 2 years and my whole ordeal. i had been eating exceptionally well and only had one cold. aside from complications that i could not really prevent (c-diff and pneumothorax post surgery in april of 2010), i was surprised to find out a few weeks ago that i had been walking around and going to school with pneumonia for the past 2-3 months!!!

i had been complaining often of shortness of breath, difficulty breathing on extremely hot and humid days and remarked to many that i thought i was developing asthma or that i was anemic. blood work came back perfect. i feel slightly embarrassed that i did not recognize that i had pneumonia as this is now the 4th time! had i known, i would have sought treatment much earlier. the only thing i think that threw me was every other time i have had pneumonia in the past, i had an aggravating cough that would keep me up all night and fever/night sweats. i had none of that with this bout.

after a 2 week round of antibiotics and a bout with a superinfection (again...but thankfully not c-diff) i think i am feeling better. i did not get a phone call from my follow-up chest x-ray so i hope that means its all clear. i am still feeling short of breath and tired but this could be because my body has been deconditioned (to cause to decline from a condition of physical fitness, as through a prolonged period) so i need to work on increasing my fitness level again.

sorry for the late response/follow-up from my last post. i do blame this on the pneumonia. it's great to have excuses. lol. my excuse now if i don't post is that semester 3 just started for nursing. i am officially half-way through the program. this semester i will get to go into the OR and witness a few surgeries. this is very exciting for me. maybe i will get to see a double mastectomy!

***stay tuned for a guest post this week from David Hass on "Human's Power Over Cancer" and how to utilize Cancer survivor networks.

Tuesday, August 9, 2011

93. dusty

wow. my blog is becoming like an old book on the shelf. it's been almost 2 months since i've been here. of course, i will give you the same excuse...and it is a legit one...nursing school takes up all my time.

i am currently nearing the end of semester 2...that means i am pretty much half way through the course. finals start this week and run into next week. then 2.5 blissful weeks off. i so need it. i would like to enjoy the summer before it disappears and the snow makes its appearance again.

i don't have classes tomorrow, but tomorrow is the day i meet with the new genetics counselor which will hopefully be able to determine which route i should take in regards to surveillance now that my breasts...are gone! i have read different opinions. i'm just not sure what to do. i don't think i should be doing nothing at all because as we all know, there is always residual breast tissue after mastectomy. i still have my lymph nodes...and breast cancer could still start in the arm pits, etc cuz there is tissue there too.

i will let you know how it goes. it may be a few days. hopefully i remember to post in the flurry of studying and trying to maintain my honor roll status when writing my exams. it sure is stressful. semester 2 was harder than semester 1.

if you are reading this and it is subsequently 1 month since i have posted, please send me a message.

apologies to my blogging community/brca sistas! i have no idea what is going on in your lives right now. i miss you. i hope to get caught up and connect with you over my mini summer break. you gals are in the back of my mind. i know you were rooting for me to get to this point, and yes my life has gone on. i hope not to forget about this blog though. it's just on slow motion right now while i am in school.

lots of love...and if you are someone who has just come across my page and are looking for support, please message me because i do make it a priority to help out our community:)

oh...and just found this cool link that sums up PBM nicely:
http://www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy

Sunday, June 12, 2011

92. boobless get-together!

this past friday a group of women decided to get together. we didn't know each other, but we shared a common bond that drew us together. our boobs...or lack there of...i prefer to call them upgrades;)

this started off so innocently enough. i had given permission to my plastic surgeon Dr. Avram to share my blog with his patients. through my blog i have been able to connect with some of these women in my area and offer them advice and reassurance through face book, emails and phone conversations. i have been able to connect some of these women with other women i have met through FORCE who are going through the same things at the same time.

a lady who i connected with through my blog - Alana, was so awesome enough to put a gathering together for us to all meet. this past Friday, 7 women (+ 1 mom) met for the first time at a restaurant. the kinship was immediate. within minutes we had connected on an intimate and personal level. we laughed and we cried. we joked around and we hugged. we shared our ups and our downs and i can say for certain that at the end of the night we all left with a glow in our hearts.

it has always been my hope all along that my blog would help to empower others along the same or similar journey as me. that hope was completely surpassed when a complete stranger who i had only met an hour before toasted me and my blog. with tears glistening in her eyes she looked into mine and struggled to stammer out the words of how much hope my blog gave her and her daughter during such a frightening time when her daughter was diagnosed with breast cancer and everything was unknown.

as i recall the memory now i am overcome with happiness and joy and yes some tears, that i as a human being could offer such hope to just one family. it is almost surreal and hard to believe! surreal that 7 women were raising their glasses in honour of me! hard to believe that i, just one person, could have so much impact on other people's lives.

thank you to the wonderful women i met this weekend. i can't wait to get together again. and to the one's who couldn't make it, there will be more get togethers to come!


boobless wonders!

Tuesday, May 17, 2011

91. where do we go from here

last week saw me visiting my breast surgeon for a one year follow-up from my double mastectomy. the appointment went well. both her nurse and the breast surgeon herself were very impressed with my results and commented on the symmetry of my reconstruction. this was good to hear because some days i have a hard time looking at myself in the mirror and seeing the obvious scars.

i think i may have mentioned before...maybe not, but i have been very confused with my grand-mothers brca results. as mentioned, we have a brca2 mutation of unknown significance. this unknown significance mean i don't know what to do. should i be doing any additional screening? should my family be doing any additional screening? should my uncle at 58 who has just been diagnosed with prostate cancer be tested since we now have a living affected family member?

these were all questions i asked my breast surgeon. she sent off a referral to a high risk clinic with in the Juravinski that can better help me answer these questions. the genetics counselor already called me the next day to do an over the phone assessment. she will be in touch with my genetics counselor that i have lost touch with at mcmaster to get my file transferred over.

i was still impressed with the amount of information my breast surgeon knew. she suggested annual skin checks for melanoma...which DOES run in our family...i am actually getting a mole removed next month that i showed my plastic surgeon who did my reconstruction. he volunteered to remove it since it's something else he does.

so there is ambiguity, but i feel that i am in good hands. i am excited to meet with the high risk clinic. i am going to be seeing a high risk doctor that another brca friend suggested. i am excited to get some answers and not be stuck with all this wondering.

Sunday, May 8, 2011

90. holes

it's mother's day today. another day where i feel the emptiness and loss of my mother. even after 19 years there is still a hole. the sense that i am missing out on something special. a heaviness in my heart.

while many were getting up early to take their mother's out for brunch i was curled up in my bed. i know that on days like today her death still weighs on my heart, depresses my soul.

i couldn't get myself out of bed till 3pm.

sigh.

what's even harder is that i can't even articulate what i feel inside. words can't describe the loss. the holes. the emptiness. the sadness mixed with numbness. the ever evolving feelings of grief.

i even more saddened knowing i am not the only one who experiences this today. my arms are extended out to my community and all the women and men on here who have lost their mother's to the terrible disease of breast or ovarian cancer.

Friday, May 6, 2011

89. one year follow up with my breast surgeon

this coming wednesday i have my one year follow up with my breast surgeon who performed my mastectomies.

i have some questions in regards to continued breast surveillance and whether or not i need anymore screening. i have heard from others and from some medical and published opinion that i should at least still have a base line mri. i can no longer have mammograms as far as i know but ultrasound is still possible.

any suggestions or questions i should ask? i also got the name and number from another breast buddy melissa for a high risk brca doc that i am going to ask for a referral for. there is still the question of my ovaries and ambiguous brca result that i would like more of an expert opinion on.

Friday, April 22, 2011

88. I made the Dean's List

Just wanted to share my success. I made the Dean's List for this Semester! I can't believe it and yet I can because I set my goals and kept my eye on the prize. Dean's list is an overall average of 85% and I still haven't got a mark back but even if I did not write that test I would still have an 87% average...so, when I do get that mark back I am looking at at least a 90% average.

I am incredibly proud of myself considering all I have gone through in the past 2 years especially entering school while still vulnerable and recovering from surgery. It wasn't easy and some days I still feel like I am catching my breath and recovering.

In reality, I am still recovering. I am adjusting to my new body. And it is not always easy. I still experience weird sensations, numbness, pain and extreme tiredness but it has all been worth it. I am so glad I didn't wait to start school in September.

My time is now:) Thanks for sticking with me through this journey. It is so great to see the light at the end of the tunnel:)

Tuesday, April 19, 2011

87. I'm up for nomination!

Hi everyone. I have some exciting new!

I am up for nomination by two of my teachers at school for my hard work and participation in College Life and Community Life. If my blog has touched you in some way or you've reached out to me and we have corresponded via email please consider sharing your thoughts or write a letter of recommendation about our experience on how my blog helped you in your experience or quest for knowledge.

Please submit your responses by hitting the CONTACT ME button to the right of the screen or email me personally at binary.speaking@gmail.com

Also, please be aware that what you share will be shared with others so be sure to protect your own confidentiality if you don't want private information shared. As well, it would help if you put a disclaimer at the bottom of the message stating that you give me permission to share your letters publicly:)

Thanks all! Life is so exciting!
Rachel

Sunday, April 17, 2011

86. 1 year post-op PBM pictures

hi everyone! i finally got around to taking some pictures. these are one year post operation of my double mastectomy. since i moved, the quality and lighting of the pictures does not look the same as all my other pictures because i could not achieve the same lighting. bummer. the lighting also makes the foobs look a little off however, what you are seeing with my nipples being different heights is what i see in the mirror.  the little bruise (bovi-burn) hasn't disappeared much on my left breast.

when looking at these pictures, keep in mind that my scars are only 4 months old as my final reconstruction surgery was december 6, 2010. i'm not overly excited with the way my scars are looking so far but i gues this is because of how i heal. i was really hoping they would look thinner than they do.

overall, i am very pleased with my results. i am looking forward to the day i have a little bit of cash to get some nice bras and a sexy swimsuit. i love my new cleavage...and also not having to wear a bra!!!



Thursday, April 14, 2011

85. 1 Year Post-Op Mastectomy!!!

Woo Hoo!!! 1 Year!

Yes! Life does go on!

Today found me in a great mood and giddy despite being extremely tired from school.

I apologize that there are not pics as promised. I will do them over the weekend when I have a chance to breathe. I have one week left until Semester 1 of Nursing is done and then 2 blissful weeks off before Semester 2 begins.

xoxo

Sunday, April 3, 2011

84. still here!

a quick hello. i am sooooo busy with school. it has taken over my life in a good way. i am growing so much as a person and i am so proud of myself! i am pulling off the marks i had aimed to achieve which is making all the hard work more worthwhile!

one year is fast approaching since i had my mastectomy. i will be sure and do a one year post; complete with pictures. april 14th...save the date:)

Sunday, February 27, 2011

83. this is cool and why i have had no pics of my boobs recently

ok...so check this out.

pretty cool right? see all those red dots? these are where people are in the world that are visiting my blog. if i hover over one of the red dots when i go to my lifestat screen, it will tell me the specific country and state/province and city people are visiting from and also how many times they have visited my blog.

i think it is so cool that i have had visitors from all over the world!

as for photo updates...i wish to inform you all that i sold my camera a few months ago to help with school. hopefully i can get my hands on a professional camera soon and take up-to-date pictures of how things are healing and settling. for my own personal reasons i would also like to compare because i am starting to get impatient with the healing of my scars and think they have actually gotten bigger:(

happy march break to those that have it coming up. i have one week off right now and so need to catch up on my rest and have some fun!

Tuesday, February 15, 2011

82. purpose, brca results, and slippery slopes

a very cool thing happened yesterday. my plastic surgeon's office called and asked if i would be willing to speak with a women who had chosen to use him as her plastic surgeon for her reconstruction. i of course agreed, because any information i could share about my personal experience to help ease the anxiety of someone else is empowering to them and also healing for me as well.

about an hour later, this female called me and we chatted for about a half an hour. like me, she had already spent hours researching her stuff and knew what type of questions to ask. i was able to give her my personal experience side of things and some tips on what to expect and how to prepare for possible complications. she was very grateful and we both felt very good after our conversation. i got her email after, and shared some further information and links with her.

a., if you are reading this, thank you so much for talking with me. i wish you all the best and as i mentioned, i am here for you as much as i can be for someone who does not drive;) i hope speaking with me will help take some of the anxiety and feeling of not knowing away. i commend you for being proactive with your health and doing what 'needs to be done' for your kids and family.


on a separate note, i have not shared my family's brca gene testing results yet. it's been a few months since we received our result and i didn't know how to process it. genetic testing was done on my mother's mother's side of the family, and as of yet i have not shared the results with you guys. well here are the results.

brca2 mutation - unknown significance.

still don't know what to make of this. i don't know if i have this particular brca2 mutation because they will not test related family members when it is a mutation of unknown significance.

so, i am still glad i went forward with my pbm and didn't wait around for results. i am glad i made my mind up before any possible results.

as for this result. it has been graded as possibly going either way. the genetics counselor said to check in once a year to see if any further information comes to light which would indicate whether or not our particular mutation is harmful or not...or lets just say whether it is what is causing our familial cancers or not.

so here is the slippery slope. some scattered cancers have appeared here and there on my mother's father's side. to date, there has been a young breast cancer on his side, my mom's father has had prostate cancer (treated and in remission), her uncle had lung cancer, and now within the past few weeks another one of her uncles (my great uncle) has been diagnosed with the dreaded pancreatic cancer.

so now i have the nagging fear that maybe there a genetic defect on the other side too. at this stage of the game, i am sure there is nothing to be done. i do not think this side has any interest in genetic testing and does not at this stage see a need for it because there are not as many cancers on this side in comparison to my grandmother's side.

i guess all i can do for now is give the updated information to my genetic counselor and let her make sense of it. but damn, this cancer stuff sucks! nothing like getting those phone calls that another family member has cancer.

Saturday, February 5, 2011

81. so out of the loop

hi all.

school has taken over my life! i have no idea what is going on in the brca blog-o-sphere anymore. i miss so many of you!

yesterday was my second friday in clinical placement (i'm going to school for nursing - clinical is hands-on training and practical). it was such a great experience and i got a lot of positive feed-back from my class-mates and the staff at the hospital.

i wanted to share, that through out the entire day at clinical, i did not think once about my boobs! i am no longer my boobs. i am no longer my mastectomy. i am no longer my surgery or reconstruction. i am no longer a patient. i don't know if you know what that means or not. some of you will. up until a month ago, this boob stuff was always in my thoughts...permeating everything i did and thought.

i am now just me. a nurse. a student. coming into my own. my 3 year journey no longer defines me. it now is just a memory and something that gave me strength. showed me what i was made up. showed me my strength.

:)

so in regards to my surgery...i am able to sleep on my tummy every night now. i get more and more used to it every night. it is still a conscious event of turning onto my stomach to get comfortable.

hmmm...what else.

oh i wanted to give a shout out to a new blogger. please welcome her to out community and check out and comment on her blog: http://andthentherewasoneboob.blogspot.com/

Stephanie sent me a very nice personal message. her blog is really cool. last year she got married twice, once in london and again the next day in paris. the picture on her blog is totally her. i love her wedding dress! this past december (not even 2 months ago) Stephanie was diagnosed with breast cancer. she is currently going through treatment and reconstruction of her breast that was removed via mastectomy. please pass by her blog and give her some support. i know y'all are good at sharing the love!

Saturday, January 22, 2011

80. featured! on previve.com

check out my story on previve.com! just scroll to the bottom and there i am or go directly to my story: http://previve.com/?p=747 or read the cut and paste below.

claudia gilmore is documenting her experience and created previve.com. i credit claudia with empowering me to look at my journey differently. it wasn't until a few months ago that i felt i could embrace the word previve and be proud of my journey. now that i am completely done with the mastectomy and reconstruction i am proud of myself! i have seen what i am made of and i know who i am now. and...i am a previvor!


Monday, January 17, 2011

79. 9 months! i could have had a baby but instead i got new boobs!

NOT PREGNANT!

NO BABY.

JUST NEW BOOBS!
well...it has been 9 months since my mastectomy and about 5 weeks since my exchange from expanders to implants.

thoughts?

many.

here are a few. some verbal diarrhea.

ptsd? i think i might be having some post traumatic stress. i think i need to go for some counseling to wrap my head around everything...the 2 year agony leading up to surgery, the biopsies, surgery, pneumothorax, c-diff, exchange. all of this mental and physical stuff has taken a toll and i have mostly kept it to myself and stuffed it.

i broke down the other day at school while getting my flu shot (which i am against), and i felt like i could have cried for a century. of course it was not the time or place. the thing is, when i was going through all of the above shit, i was trying to stay positive and focused just to get through. it never really felt real or like it was actually happening. i never really dealt with what i was actually going through because i needed to stay 'strong' in order to get through it. i was mostly in reasonable mind/intellect mode.

well, now the emotions are surfacing. sigh. and life is happening! life is great! but it is a huge change to what i have been experiencing over the past few years...medical issues and lots of isolation. i also have a lot of emotions i need to work through over the assault.

fortunately, college seems to be a good starting point in finding someone i can talk to. they offer free counseling services which will also be beneficial with getting added advice on my studies. the other option is, i can return to my nurse that i was seeing a few years ago when all of this shit happened and before i moved up north.

as for the actual boobs...foobs...

they are great...thanks for asking:)

now that the swelling has gone down, there is some noticeable rippling but that is just part of the story folks! they still look beautiful. they have been feeling really tight the past few weeks, but hopefully that is because i have been doing too much with the move and lugging 50 pound books around. i was also told by the ps that inflammation sets in around week 6 so things are still going to change and look different.

(edit: these are not pictures of me above or below)

i started massaging last week (lol...even while in class), and joyfully located my bio oil last night which was promptly massaged into my scars after a relaxing bath. the scars are still very, very red, so hopefully the bio oil will help diminish that, as it seems to be one of the best advice for scars on the FORCE boards.

oh! and last night was the first night in eons that i was able to sleep on my stomach again. i am excited about going to bed tonight and having a more restful sleep.

i guess that is all for now. i am swamped with school. i love my new apartment. and among all that, i have recognized that there are some sensitive emotions that need attending to despite all the positive joys happening in my life right now.

back to the books!

Wednesday, January 12, 2011

78. life!

ok. so a lot has happened in the past few weeks to distract me from this blog.

i moved.

and i started school.

i haven't had a chance to catch my breath from the move and barely had time to unpack before i started college this past monday. i will say though, that i am loving being back in the big city, love my new apartment, love seeing my cats so happy in it, and i love being in school.

life is so completely different and new compared to last year that it makes it easy to go about my day barely thinking about what i endure this past year. how great is that?!?! life goes on!

anywho, tomorrow i finally have my post-op appointment for my exchange surgery. it was delayed due to being 'snowed in' up north. now that i am back in the city, my plastic surgeon is easily accessible. only a 5 minute drive from where i live:)

sorry if i seem neglectful in the coming months. i will try to check in every once in a while and i will try to do a follow up post in the next coming days to let you all know how my post op goes in the morning:)

turning in now for some much needed rest.
ZZZZZZZZ