“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”
With the end of the year approaching, everywhere you turn you see recaps. I did a medical recap not too long ago and quit honestly am not too interested in reliving this year. Instead I am looking fully forward to what I hope will be a better year.
Making a statement like that always makes me pause for a second because of how close I was to cancer (according to the pathology reports). I had the bilateral prophylactic mastectomy to prevent cancer since I was high risk but until we received those results showing cancer markers, well we had no clue just how close I was. So, with that said the end results made 2012 a good year I suppose and I guess I should recognize that good.
The hope for 2013, well they are filled with no surgery, no medical scares and good times with my family. I do need to get through the follow-up Ultrasound next week to check on the complex cyst. Hopefully that shows that it took care of itself and onward we will move.
One super bright spot that we have all been looking forward to for some time is our trip to Disney World! We are in the home stretch and can begin an official countdown in the next week or so. My girls do love official countdowns . We are all really looking forward to this trip! We are staying at The Animal Kingdom Villas-Kidani, right over the Savannah. How thrilled with the girls be seeing the animals come close to the balcony.
Since we are staying in Disney we also did the meal package. It is nice going and knowing that almost everything is prepaid. We will be dinning with the Princesses, Mickey and crew, Chip and Dale and at the new Be Our Guest Restaurant. Planning this trip, making the dinning reservations were a nice distraction while I was recovering from surgery. Finally coming close to the actual experience knowing how much we are all looking forward to it, well what can I say that Disney does not? It is the happiest place on earth!
I went to my primary doctor today for the first time in a few years. All went very well, blood pressure was 100/70 so that blip before the mastectomy was just that, a blip. After stepping on the scale I can officially say that I am down 40 pounds from my maximum weight and very pleased.
Here is my dilemma of the day, after the doctor wrote me out a script to get a full blood panel done she tossed in a comment that I may want to have a colonoscopy done. She said there is a slight increased risk of colon cancer with breast cancer. BUT I did not have breast cancer. I would have eventually probably but I did not.
I came home and did some investigation and just don’t know if I really need to do this test now.
It just never ends!
I continue to be amazed with the depth and intelligence of my own children. Although I continue to heal, I am not 100%. It is no secret to the girls that I am not fully comfortable. They are aware that my body is still changing. I am trying to get things back to a normal daily routine but all they have to do is see me while I am changing and it is clear that we are not fully back to normal.
Megan is pretty easy to read. She wears her feelings on her sleeve so if something bothers her it does not take long to identify it and get it out into the open. Madison, she is a totally different animal! Things come flying out of her like missiles out of the blue. The other night, I was putting her to bed. We go through our normal routine, which in itself is very structured. Madison has certain things she has to say and have said to her nightly. As I give her one last kiss she looks up at me and says, “Mommy, will Megan and I have to have our boobies operated on when we get older?”
I was caught so off guard! Although I do my best not to lie to my girls, sometimes there is no good truthful answer. The honest answer is, I just do not know but it is highly probable. They have two grandmothers who past due to metastasized breast cancer and a mother who according to all of the doctors involved, would have been a breast cancer patient at some point had I not had the Prophylactic Mastectomy.
I gave her a hug and told her that we did not need to worry about such things. As I walked out of her room, I admit I had a few tears. I would do anything to protect them! I guess reality is that for as much as I want, I will not be able to protect them from everything. Over time, I will seek out advice and take any and all steps needed. It never ends!
Back in May I posted a page called Reality Hits. Those feelings after walking into the Oncologists office a year ago, both fear and empowerment. Seems like a life time ago! Today I was on my elliptical machine sweating up a storm, thoughts swimming in my head, when it finally started to hit me…I have a new reality! I will not get breast cancer (alright nothing is 100% but 93-95% is not bad at all!) I will never have another mammogram or breast MRI. I started to feel empowered again! When I finished my workout I tooted my own horn with my FB post..(which is not like me honestly):
Exactly 4 weeks ago today released from a one week stay in the hospital after a Bilateral Prophylactic Mastectomy. A 20+ inch incision across my abdomen. TODAY a 20 minute high impact elliptical workout followed by 5 minutes on the punching bag…DAMN right I am proud of myself!
So much time agonizing over the thoughts of cancer…gone. Then, the validation of my decision to have the mastectomy when the pathology reports hit.
So I understand that I am not ready to run a marathon, but I remember about two weeks ago getting stuck on my back on my own bed, lying there like a turtle. I also fully grasp that I will have a set back on 8/24 when I have the surgery for the nipple reconstruction and revision, but for now I will do what I can to get in somewhat decent shape before then.
The new reality is not too bad at all!!
I have never been an avid reader. My mother and sister both could sit for hours book in hand world tuned out. My mother tried with me to no avail. This also made school especially college very interesting. I guess I am pretty smart. I graduated with a 3.5 GPA and Dean’s list but my deep dark secret is that I don’t believe that I ever completed a reading assignment. I used to read the top and bottom line on a page..mabe peek at the middle if I did not get the gist of the page. I look back now and wonder, how would I have done in school if I actually read an entire book?
This is on my mind right now for two reasons. First my oldest daughter. My Megan is a lover of books and I do everything I can to encourage her love! SHe is sitting here with me right now reading. She just completed the second grade but the last school check put her on about a fifth grade reading level.
The second reason is that lately I have actually been reading. I spend much time on the internet reading different blogs, mostly on breast cancer, BRCA genes, Prophylactic mastectomy and another disorder called Cowden Syndrome. When I started this blog, as I stated before, it was just to clear my own thoughts. Then I found some blogs that helped provide me strength to move forward and now I sit as one of those blogs that is helping others. I welcome this change of rolls and take it seriously.
AS I read, I find two themes to be particularly alarming in my opinion even dangerous. NOW, let me be clear that I am not referring to woman who had been diagnosed with cancer. I am specifically discussing those of us who are extreme high risk for one reason or another who are lucky enough to be able to take control of our situation before cancer strikes. The first theme is the self-pity “breasts are what make me a woman”. Really? What makes me a woman is my strength, my do anything attitude, I take responsibility for my own actions, my intuitions, nurturing ability, gentleness and compassion,my ability to kick ass when needed, my manipulation skills, my pride ,my ability to ask for directions when lost and oh yes that vagina thing (to name just a few). Breasts themselves are actually just fat that in many cases attack the body they were lucky to be a part of so removing them is not affecting your womanhood but instead securing it! Again, just my opinion.
The other was the ”why would you cut off a perfectly healthy part of your body”. To this I would assume that the person asking is just that..perfectly healthy. A person who would ask this has not been kept awake at night for weeks at a time waiting for the most recent biopsy results to come back. They have not had to lie face down in an MRI machine for 45+ minutes, breasts uncomfortably tucked into hard plastic molds. They have not been at a dinner party only to have the thoughts of breast cancer fill their minds instead of the conversation at hand. They have not been told that you have a 50-50 chance (or in many cases much worse odds) of falling victim to breast cancer. They have not then had to sit in a room with more than two woman and realize that if someone was going to get cancer statistically it would be me.
So to sum it up I guess I would say this. Unless you are able to put yourself fully in the shoes of another…keep your opinion to your self.
This may be the first time I have ever done a double post. I received my Pathology report today finally. I must start with there was NO cancer as expected Thank God! With that said, it was also a very scary call. As I stated earlier in the blog, I decided to have the Bilateral Prophylactic Mastectomy due to the findings of Atypical lobular hyperplasia mixed with my mothers history which resulted in a 50-50 chance of cancer myself. SO, we expected to find this in the path reports.
What we did not expect was what was also found. Lobular Carcinoma In Situ.
“Lobular carcinoma in situ (LCIS) is technically not cancer; but, because it is a marker for the development of all types of invasive and non-invasive breast cancers, LCIS is often thought of as a form of breast cancer.”
Holy Shit! It has been a day filled with emotion….obviously thrilled that I am cancer free! BUT…one of the options given to me was increased screening blah blah.
“Lobular carcinoma in situ usually has no symptoms. Many times, it’s not even detected by routine screening mammograms. This is because, unlike other breast cancers and related conditions, LCIS does not result in the formation of calcium deposits in certain breast cells.:”
For anyone who is faced with the high risk decisions to have the BPM or not….do it! Had I waited another year or two? How different could things have been for my family? I am blessed to not have to answer that question!
So this will be my last post for a few days. Frank says he will bring my laptop to the hospital if I want so we will see how that goes. I should probably be sleeping since I have to be there so early but I feel like I need to stay up and drink another glass of water. Amazing how thirsty you become when told you can’t have anything after midnight..nothing..nada! Not even a tic tac. Just the thought makes my mouth dry .
I do need to vent for a second…went to a sports store yesterday and a young boy behind the counter had on like 10 of those stupid rubber bracelets. Every cause you could think of including a pink one for breast cancer awareness and a “save the boobies” one. So, with all of the different causes on his young wrist, do I feel that he is a true supporter of these causes or are the bracelets cool? Especially the save the boobies one..which I hope I do not offend anyone, but I find that one annoying and almost offensive. I say F— the boobies save a life. The boobies can be replaced.
Maybe I am a little cranky…still pretty calm though! 7 hours away…
SO as the time draws closer, my thoughts have been increasingly drifting to my daughters. Not the same worries about them dealing with me. These concerns are bigger and more concerning to me. See I am high risk due to my mothers cancer and my own pathology. I was never tested for the BRCA gene since it really did not matter to my own risk factor. A positive test maybe would have put me closer to 80% or so… 50-50 was enough for me.
I am half of the plot for my girls. I honestly do not remember if I ever mentioned that I never met my mother in law. She passed when my husband was in College. She also had breast cancer. So I place myself back in the office and my meeting with the Genetic Counselor but the patients are now my own babies. Two grandmothers with breast cancer, one diagnosed under age 50. Mother…hmmm, how do I fit? No actual cancer but abnormal cells…. Mental note to make sure the girls have a very clear understanding of exactly why I am having this surgery.
I guess the best thing to do right now is get through the surgery. During my followup visits I think I will have to run my concern by some folks.
I will do whatever is needed.
So the clock is spinning at record speeds now it seems. I can not believe we are just a little over three weeks out of the mastectomy. The march forward continues. I had my blood work done yesterday and was rather impressed with the efficiency of the process. I usually go to a labcorb or Quest for blood work but they preferred I went right to a Cooper center so they could access the results directly. I was there for less than 15 minutes from check in til walking out the door. Almost a pleasure really, (as much as having a pointy item stuck into your arm can be of course) . I have had to sit for well over an hour many times…nice to have something move so quickly!
I am a bit overwhelmed. We have received many offers to help out during my recovery for which I am so grateful! So many of the offers are so sincere, I mean we all know how it is right? You are standing there and the conversation comes up about someone cutting off part of their body and no one is sure what to say so the offers to help come pouring out. We have all been there ugh..right? Alright, maybe not exactly that situation but I think we all know what I mean.
We do not have parents who are usually the ones who come running. Frank and I are used to facing things for the most part alone and head on and do not ask for help well. We also do not quite know what to do with help that is offered sometimes. I think we may be underestimating the degree of assistance we may need. I believe that after all of the different biopsies we both
expect hope that I will be up and around very quickly.
To all of my friends I thank you and appreciate the offers! We just might need you all!