Today is my first day here at Sloan as an out and proud blogger who shares too much about my life (lol). I am here today to get the Lupron shot which keeps my ovaries on "ice". I opted to get this shot every three months instead of monthly. The only negative about the 3-month shot is that the injection site swells (this is normal - I found out after I visited a doctor after my last shot in May) - the swelling is from the time released medication that is stored under the skin in your butt/lower back area. Yes, this needle goes right into your butt cheek. I will write a post soon about being in medically induced menopause at 40.
Not only am I here for the shot but also to get screened for a clinical trial that I decided to sign up for on the suggestion of my oncologist. I have read online that there are more cancer clinical trials than there are patients available, willing and signed up to do them. I was hesitant to sign up for this clinical trial. I was afraid of what a new medication could do to me and how to manage getting "better" with now another drug that can remind me of this big health crisis...
Ultimately, though, after carefully reading the information and sitting with my doctors to discuss my questions, I signed up and was selected to take part in the trial. I still do not know if I will get the medication or not. It is the PALLAS trial (more information here--> pallastrial.org/) and it is a drug that IS FDA approved for later stage breast cancer and has shown to help those patients with stage 4 metastatic breast cancer. This study is being done to see if the drug has the same effects on earlier stage cancers.
My oncologist told me I was a good candidate for this trial and still I was worried about signing on. I thought (and prayed) really hard on it and decided that if I am willing to change almost everything about the way I live (letting go an-open-letter-to-me.html and eating/lifestyle taking-back-control.html) then I should be willing to follow doctor recommendations and sign up for a study.
I have to admit, though, I am not sure if I am hoping to get the medicine or not get the medicine (there are no placebos so I will know if I am taking the medicine or not). I feel like Rachel in Friends when she took the pregnancy test at Monica's wedding and wasn't sure if she wanted to be pregnant or not and then Phoebe told her she wasn't and she broke down all sad and then, "Surprise, you are!" -and that was how she knew how she really felt. I know it's ridiculous to compare my feelings about a potential arsenal against breast cancer for me to a TV show from the 1990's but it is what popped into my head and I had to share it.
I will keep everyone posted -- I wish I had blogged all those days when I was here sitting and waiting for my chemotherapy but I just could not do it. Even now, I am thinking, what would I do if I God forbid got bad news at one of these appointments? In my heart, I know I would do what I started to do this June - be open, be free and just share my story to help others. Cancer sucks!
This is what I do in the time between and I will be here for a while today so maybe I will even update this post.
Have a great day!
**Updated to add: I was picked randomly to be in the arm of the study WITH the medication - and I am kind of excited about that!! :) Any thing I can do to kick Cancer's ass, I will.
Anyone who knows me knows that I live to write. I have kept a diary since I am 9 years old and I still have them upstairs in my draw - book after book after book filled with nonsense, writings that probably should have been burned before my then 9 year old daughter found them. As she sat at the eve of her 10th birthday, we spent a few hours looking at my diary from that exact same age - her thoughts -that I was really weird and strange as a child. Cannot say that I blame her for those thoughts.
As I got older, I moved away from writing all the time to only recording when I was mad, upset, sad or some other negative emotion. Then, I got to a point where I did want to be "positive" so I started a private LiveJournal to document living with two children - it took me time and grief to have that second child so once I got over it, I wanted to document all of the things that made me smile instead of focusing on the things that made me cry.
When I was 38, I decided to get out there and launch a small business called The Next Step focusing on helping people figure out how to be college and career ready. I started a blog www.thenextstep1234.com/blog and was so inspired that I wrote and self-published 4 books. (I have mentioned before but I love to write and once I wrote the first one, the other 3 just wrote themselves.) I have my own Amazon author page, which has been a dream of mine since i ordered my first book on Amazon in 1999 - check it out here--> www.amazon.com/Lisa-Vento-Nielsen/e/B01BYRZ8W2/ref=sr_ntt_srch_lnk_1?qid=1503847844&sr=8-1.
I have not sold a lot of books at all - the truth is that I have been the number 1 buyer of my books and have given more away for free than I care to count. My idea behind the books was never to make money but to promote my business and my skills to clients and for that, it did work well.
Now, though, I am working on a very different kind of book. The kind of book that makes you (me) cringe more than I want to and that I am kind of afraid to write -the book about ME and my life and my experiences as just "me" pre-cancer and post-cancer. I was always a type A person - driven, driven, driven always able to juggle multiple things and focused on the big picture, which actually caused me more anxiety I think than being myopic and only focused on part of the picture.
When I was running my business, I was so invested that when I saw someone else getting press or some similar business getting work when I was not, it would bother me so much but I just focused on making myself think I was just "driven". Then, I was hired to be a full time teacher and walked away from running my business full time against my husband's wishes - he thought I should stick with my business. Three months later, I was diagnosed with breast cancer.
I wish I could say that I was superwoman and able to survive and thrive during cancer treatment but the truth is, I could not even recognize myself in the mirror or in my soul. I was not me (so I thought) I was broken and I struggled so damn much. But I was ME - just a "me" I never knew before - someone who could not care for her children, who could not "wow" my employers or myself - someone who really had some big lessons to learn about how to live.
During that time, I carved out time to do what I love to do - write and linked below is the prologue to my story - the story of going from Type A to Type C.
It is the most raw writing I have done to date - I would love to know what you think of it and if it is something I should keep working on - my idea is to self publish this book and have it included alongside my "professional" books when I tried to be "superwoman" not to diminish me or my story but to show me forever and ever that who I truly am inside is someone who is human and who just wants to survive.
I returned from my vacation to find this amazing care package of products to try from Bath Body Candle Moments scentsthemoment.com/. These are products that the owner, Kristen (who I know in real life and is an amazing person), has found other cancer survivors like using and she curated this package for me to try and share my opinion via my blog. I did not purchase these products (yet) but I will be buying them after using them all up.
The products are full stop amazing. I have been trying to be more conscious of what I eat and use in and around my body. I am eating clean and was trying to use more "natural" products but the most natural I had for my skin was Ivory or Dove soap and I was not a true fan. I felt the ingredient list still had stuff on it I did not understand. I know that just because I do not understand an ingredient does not mean that it is intrinsically bad for me BUT I am wary of using non-organic and other chemical based stuff that I used to think was frou-frou and unnecessary worries. Then I got breast cancer and question everything and changed everything (see--> taking-back-control.html).
So these products with their simple to read ingredient list are perfect for this new version of me. Also, they smell and work wonderfully. Not trying to be gross here but after my mastectomy and lymph node extraction (which I spoke about here about-that-surgerywhat-a-mastectomy-is-like.html) I could NOT use deodorant for the first few weeks and also during radiation but even when I could use deodorant, it was not working. I do not know what changed post surgery but all of a sudden my right armpit could kill you.
The It's the Pits product here is the only stuff that works on my disgusting right armpit AND it is vegan, made from ingredients I can read and understand and lasts a long time. I have been using it for the past two weeks and change and have barely made a dent in the container. This product lasts a long time.
The Butter Me Up cream is smooth and wonderful on my right arm - which post lymph node extraction needs to be moisturized and to avoid all cuts and burns as my lymphatic system is not 100% after my 25 lymph node removal. The natural bug spray works great and is much much better than any chemical based formula. I mean, do I even need to talk about what is in normal bug sprays? It is something that I have been afraid to apply to my skin but since my blood is something all the bugs love, I needed something to help shield my skin.
The soap is so refreshing - it zaps me awake when I use it and maintains the fresh smell throughout the day. It includes lavender which is something that is calming to both the smell and the skin.
I will be a customer of these products and look forward to having them help me repair and recover from my plot twist of breast cancer.
You can find out more by checking out the company website below:
Website of Bath Body Candle Moments: https://scentsthemoment.com/
Don't Bug Me --> scentsthemoment.com/collections/body-moments/products/dont-bug-me
Butter Me Up --> https://scentsthemoment.com/collections/body-moments/products/butter-me-up-body-butter
Soap --> https://scentsthemoment.com/collections/bath-moments/products/balance-soap
It's the Pits Plus --> https://scentsthemoment.com/collections/body-moments/products/its-the-pits-plus-probiotic-natural-deodorant
I have been trained to be "professional"; I spoke about it in my blog post managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html. No matter my career as an educator, I came of age in my world of financial services. That was always my "dream" during college and my MBA program - it was to work on or around Wall Street and I did for many years. During that tenure, I learned quickly the ways to present and be professional and those rules have just stuck with me ever since.
Those "rules" are unwritten and one of the big ones was always never discuss religion, politics or sex. I have no interest in talking about politics or sex but now I am compelled to speak a little bit about religion.
I was raised in a small town, in a middle class Italian household which meant mass every Sunday and gravy afterwards. This faith was just something I had to "do" to not be in trouble and I always thought I would not go to mass once I moved out.
When I did "move out" it was for the opportunity of a lifetime - I moved to Rome, Italy to get my MBA with a scholarship. It was time to test out my theory; would I go to mass without being "told" to go? Well, the first time I went to mass while living "alone" (without my family but with friends), it was at the Vatican (hey, living in Via Santa Maria Mediatrice it meant that was practically my parish - though there was a church right across the street from my apartment)!
I felt a peace at mass, I felt connected to my family at home and I kept going week after week either to the Vatican or to the church across the street aptly named the Church of St Maria Mediatrice.
When I returned home, many things changed and yet I continued to go to mass. I was never "pious" or "preachy" and I have no intention to start to be now but I do want to talk about how my faith has helped me during this "challenge" of breast cancer.
There is something about being faced with your own mortality that makes you want to be more open, to share more. I cannot explain it beyond knowing that for me, writing and speaking have been something that has helped me process many things in my life and as I wrote a blog for my business, I have felt more comfortable with being "out there" but still I have held back on writing about faith's role in my life due to my professional conditioning. I realize now that the landscape of companies has changed since I left Corporate America in 2009 and things are a bit more free but it has never been my way to be open like this about things involving faith.
When I was diagnosed with breast cancer, I found that I needed to find peace. Once my energy levels came back, I focused on incorporating exercise and diet changes in addition to meditation and yoga taking-back-control.html. At the bedrock of all of this, though, is my faith.
I believe I have been cured (I wrote about this previously in my blog; I just believe it) and part of what helps me believe it is my faith. I could be wrong - hey, I thought I never would get breast cancer and yet here I am blogging about my experiences with stage 3 Breast Cancer. I was feeling a little off this past weekend and spent more time worrying than I want to - and I relied on some feelings and beliefs to get me through it. When I went to mass late Sunday night I saw the readings were about Jesus healing someone and I felt reassured.
My personal feeling is that Padre Pio is involved with me during this process. I cannot prove it to you and I am not trying to but I have felt a kinship with the Italian priest and even had a dream where he told me he knows me. During my day yesterday when I had some fears, I looked up and someone in front of me was wearing the Padre Pio bracelet and it brought my comfort but it did not last and that night when I went to mass, with the little worries of potential spread of cancer, the readings were about Jesus healing people and it was like, OK maybe now I can relax and let go. That is all I can do - breast cancer has take a lot from me but it has, through my own little ways of living, given me a lot, too. I realize I cannot live my life worrying and in fear - I just have to live and for me, that has been and always will be with faith.
This is what I do in the time between.
I wrote about my experience walking in to my mastectomy walking-in-to-your-own-mastectomy.html but not too much about the operation itself. Obviously, I was asleep during the procedure and really do not know much more than what the plastic surgeon had told me when I met with their offices about potential reconstruction.
It was something I did not want to know about and certainly did not want to dwell upon the actual mechanics of the surgery. I trusted my hospital, my surgeon and I did not need to really know how it would be done.
I knew I would wake up with just a flat area where my right breast would be, I knew I would no longer have a nipple or any sensation with or without reconstruction. I understood, in theory, all of this and about the drains, too.
That being said, there is only so much you can fathom until you do it. I know a lot of people who are afraid of mastectomy, or of any operation for that matter. I understand that - I just was not afraid I guess because I was more afraid of the cancer that was growing inside of me than I could be of getting it out.
Fear is a good temporary motivator - it is not something that I could accept living with for the rest of my life and this from someone who had spent years being afraid, too. I remember as a child, climbing the steps to a ride and then chickening out at the last minute and turning around to walk back down, the true walk of shame for a child like myself. Everyone staring at me and judging me for being a coward.
During my diagnosis and pre-surgery visits to Sloan, I felt very much like I was climbing those steps to those rides I had run away from but now, I could not run. I was oddly calm about chopping off my breast even when the question was whether a lumpectomy would work (it ultimately would not have worked) - I was pushing for the mastectomy because deep down I knew, I just knew it would be more than was thought. I have always been an overachiever and I guess it would be so in cancer, too. My main motivator was to get the cancer out - what I did not yet understand was how it got "in" and that story is for another day.
I woke up from my surgery bandaged up and sore. When I say sore, this could mean anything to others but I have to spend a few lines on my relationship with pain. I have a very high threshold for pain. With childbirth, I pushed for 12+ hours without pain medication and I did not scream the way people seem to in movies and the like - if was not pleasant of course. During labor, though, I was reading a book I only put down grudgingly when it was time to push and my glasses fogged up too much to read, anyway. For my second child my son was a c-section and a few hours after surgery, I was bending over to pick something up when the nurses began to scream at me. Apparently, after being put back together with staples, one should not bend.
So pain and I are kind of incognizant of one another - I do not react to pain in normal ways. So it was post mastectomy. I had my bandages and drains and a pink sports bra that velcro shut in the front but I really was lucky to not have "pain".
I did have a lot of numbness and if I tried to move my arm too much, bam there was the pain. I did not have the balls to look at my chest area, though. I was able to chose not to look too closely by just leaving my glasses behind when I had to change my dressing. I am severely myopic and without my glasses on, things were blurry and I liked it that way. I would not be ready to look at my chest until a couple of days later at home. I am not a squeamish person, per se, I just knew that once I saw the breast was gone it would really really sink in that I was now a "cancer" patient and maybe that was just not clear enough before the surgery.
The drains and right side tenderness made it impossible to lay on my right side. I had to lay on my back because I also could not use the muscles to move my body on to my left side, yet. That night, the physical therapist paid a visit and taught me the 6-7 exercises I needed to do to regain mobility in my right arm and also explained to me that from now on, my right arm had to be restricted from all kinds of activities like blood work, blood pressure, oh and also from cuts and burns if at all possible as so many lymph nodes were gone it would be hard for my right arm to fight infection.
I did the exercises religiously 6 times a day and before I knew it, I could move the arm a little more easily and could even lay on my left side in bed. The drains were annoying but they were only in for two weeks; when they were removed, it was instant relief of the pinching and the pulling of having drains sewn into your body.
Radiation really had me stretch the right arm to keep it above my head for 10-15minutes at a time but still 8 months post mastectomy, my arm is kind of not "normal". It is weaker than it used to be and I have residual pain in the arm. I am a left handed person who does everything with my right arm so I am constantly having to stop myself from instinctively using my right arm to reach for stuff, lift stuff and find stuff. It is a challenge for me, though, I am constantly switching to my left arm only after I feel the pain on my right arm.
I was not looking or touching my skin of surgery much until radiation. I had to apply creams to the skin and when the oncologist would touch my right side, it felt like someone was touching me with another body - it is hard to explain but the skin was so dead feeling I did not really feel she was touching me. Once I began to regularly apply creams and as radiation burned away at my skin, the sense of feeling came back. I am no longer afraid to touch my skin or apply the cream like I was when I first came home from the hospital.
If someone like my children or husband or puppy get too close to my right side, I cringe. My mastectomy is cut deep to the bone so I do not have any "meat" there to stop impact. If my kids bounce into my right chest, I howl.
I do not look in the mirror and get surprised anymore that I am missing a breast. It is just part of me now to know that I am one boobed and no longer have a pair - they never matched anyway so I am more and more used to it every day.
I hope if you have had a mastectomy, you will share how you felt post surgery or if you are scheduled for one, maybe this post will help you not worry too much about it.
My life has taken many twists, turns and paths. I started off a great student then became a very bad student. I have also been a mediocre and Straight A student. My personality, though steady, has been influenced in the past by friends, boy friends and family. My core has always been someone who would rather be alone with a book than the gregarious, social personality that shows more than the book person.
I never did think my path would go to the places it did. When I was a small town Staten Island girl applying to college, I stayed in my small town. When I graduated, I got the surprise of a lifetime in the offer to study at the Rome Italy campus for a year. It was like a giant hand held up a sign that said, "Plot Twist!" but it was a great one.
I have written about my youth and some of the less fun "plot twists" that I dealt with a-tale-of-two-novembers.html; picking up and moving to Italy was probably one of the best twists in my path. It was not something I had foreseen or planned for - it just happened. I was ready for it, moved away and kind of became a different version of me. I did not become a different person but from talking like Marisa Tomeii in My Cousin Vinny, I know had a more refined voice honed from the fluency in Italian. Hot damn, I was now fluent in Italian. I spoke about my relationship with my hair and getting it chopped to within inches of its life while living in Rome am-i-me.html.
In college, when it was clear I had become the "uber student" - captain of the Speech and Debate Team (why, yes, that is why I love to stand in frond of crowds and speak), a member of the highest honor society The President's Society, straight A's, etc, etc, my grandfather looked at my Sicilian childhood sweetheart's dad and said, "I hope your son is going to be willing to have the babies because this girl is NOT going to have time for that." I think it was the most proud thing my grandpa had ever said about me - the Sicilian did not like it as much.
I remember telling my grandma, who helped raise me and my brothers, that I had no intention of getting married or having kids until maybe 40. She thought that was a great idea. I was raised as a traditional Italian Catholic girl with strict rules and curfews but I was not pressured to have a family, to get married. Everyone thought it was awesome (or told me they did) that I had no intention of rushing into anything - despite the fact I was paired off since about 12 with the same guy.
I wind up getting my MBA and beginning a career that was both mystical and boring. I wind up traveling the world for work and going to my beloved second home, Rome, on long weekends just to stay fluent and with the people I love as a second family.
I meet my husband, quickly move in together (plot twist), get engaged and plan multiple weddings. We kept planning and cancelling weddings - cold feet, personal issues, you name it, we went through it. My path kept twisting and turning and it could not be written as better drama than it was in real life.
Before I know it, we are married and expecting a child. Everything shifts -my life changes in a way I never thought possible, a way I never understood. After my first child, when we try for a second, I have a kind of secondary infertility caused by a genetic disorder. By the time I do have my second child, it is during a stretch of my marriage that can only be defined as "crumbling". That crumbling kept shaking off crumbs for many years. My husband and I barely communicated. I did not appreciate him, he tolerated me. I always knew he loved me though.
I started working on my own - teaching classes ad hoc at local colleges and universities (because that is what I love to do) and then running my own business as I needed to have flexibility in my schedule. In running my own business, I started using social media and blogging and found that writing is my favorite thing to do. I write more, filling 4 self-published books. This is a plot twist - I always dreamed of being a published author but had always tried my hand at fiction, which I suck at. I can never figure out how to manage the dialogue inner and external.
Then I get hired for a full time job for the first time in 8 years that seems to be the perfect job for me and it is until it isn't anymore.
The biggest plot twist, right hand turn, gunning it off the cliff like Thelma & Louise of course was being diagnosed with breast cancer. I already wrote about how I thought my risk to get the disease hovered between 0 and -25% what-is-your-breast-cancer-risk.html. I am embracing this diagnosis though and saying to all and sundry that it will not change my life, it will not change me - it is just changing my path the way all of those other "plot twists" did in my life. It keeps me strong and focused and makes me remember that I am me, Lisa, and I am important and need to take the time to work on me and my needs. Oh and also it makes me realize my husband is kind of a great guy and that my kids can do things without me being the only person there to do it.
Big lessons at 40+ years old but ones that are necessary for me to stay well and healthy in the time between.
I had no ties to my right breast or qualms about getting rid of it once I found out there was cancer growing in it. When you walk into your own mastectomy and are hugged by your surgeon you know you are doing the right thing in the right place. That doesn't make it as easy as 1,2,3 but that day 8+ months ago, I wasn't nervous and I expected to be. I wasn't sad and I considered I would be that too. I felt strong and ready.
My surgery was for first thing in the morning and as I have blogged about before that my surgery was set and booked before we knew which procedure I would need.
My surgeon really just made me feel so loved and when I begged him to schedule me for as soon as possible as I could not imagine going through the holidays or even one minute more with cancer inside of my body, he booked my operating room time without knowing if it could be mastectomy or lumpectomy.
That morning, on December 16 2016, I left my house at 5am with my dad and my husband while my children slept. My mom and mother in law were at my house to get the kids ready and off to school that morning. The night before, I told me kids how happy I was to be having surgery and how great it was that the cancer would be removed. As soon as I had told the children I had breast cancer, my daughter intuited the surgery - she said, "so are they going to cut off your boob or something."
I did not leave anything out - I explained when I got home the day after surgery that I would be in need of space physically as I would have drains and dressings and other things in the way. They nodded and kind of got it. My daughter had seen me go to hospital to have my son; my son had never seen me go to hospital for anything.
When I got to the hospital for my surgery, there was check in and set up. Everyone was nervous but I was not. I remember thinking, "I should be nervous." But I was not.
My dad and husband were soon joined by my youngest brother and my mom and mother in law were en route after dropping the kids off to school.
I was by now in a hospital gown and waiting. The anesthesiologist, a beautiful woman, came to check on me - her mom's birthday is the same day as mine - as every check includes rattling off your name and birthday. I was 3 days past my 40th birthday and this mastectomy was going to be the best gift I have ever had - next to the clean petscan done on my actual 40th birthday.
Looking back, I can't remember if my mom and mother in law made it in time to see me before my surgery - I'm positive they did not, but it's murky. In any event, I knew my kids were safely at school as I got ready to head into surgery. When it was time, I still waited for panic or anxiety. I knew this was a serious surgery and I understood that this was not like my c-section when I came home with a bouncing baby boy.
I expected to be wheeled in on a gurney to my operating room but instead, I was told we would walk and the nurse and I walked to the elevators and waited for the doors to open as I waved to my family who was there and going to wait for me in the waiting area where a computerized billboard listed my initials, birthday and which step of surgery I was in as updated.
The elevator dinged and still I searched myself for panic or sadness and still there was none. The door opened and the nurse moved to the side as I walked in alone. It was so bright inside I was blinded and then I saw my surgeon jump up, hug me and lead me to the operating table telling everyone I was his best patient and that they all had better treat me the best.
The anesthesiologist was there now masked and as I counted backwards, I fell asleep but I know I was smiling.
I woke up later in a recovery room that would be my room for the night. I was groggy and the nurses told me to sleep more and they kept my well meaning family away until almost 130pm. I got to rest up and then they only let in 2 people at a time- which was also great. I got to manage the crowd.
I was told immediately that all of the cancer was gone but because it had gotten into my lymph nodes (which I found out later made my cancer stage 3A), that I would need chemotherapy.
At that point, I did not care about what would happen next. I realized I had spent my life like it was a great book that I wanted to get to the ending of to know all and to be in charge and now I kind of was learning a new way to be where the ending is never known and control does not exist.
I think I am happier this way. I know I would be happier to have had all of this be a misdiagnosis and that I never had cancer but got the lesson anyway but life doesn't work that way so I share my story for those who are about to walk in to their own mastectomy or hear the words no one wants to hear - that they have breast cancer or any cancer for that matter.
That's what I do in the time between.
I thought my risk of getting breast cancer hovered between 0 and -25%. I have posted before about going for my mammography every year just because I follow doctor's orders and how every time I went, I thought it was a waste of time - managing-diagnosis-from-super-woman-to-cancer-patient-in-two-seconds-flat.html and managing-diagnosis-part-2-superwoman-to-cancer-patient.html.
Why did I believe I had no chance of getting breast cancer? Simple - I had no family history of breast cancer and no lumps and no cancer period in my family. Obviously, I was wrong.
You see, what no one understands until it happens to them is that family history has to start somewhere. I wish it did not start anywhere in any family and most of all, of course, I wish it did not start in my family but it does and it did.
Most women who heard that I had been diagnosed immediately told me, like I was a priest and they were in a confessional, that it had been x many years since their last mammography. I understand many health insurance plans and "medical guidelines" do not approve mammography on women under a certain age and/or other "rules" but I do stand by the fact that my yearly screening, which to me was like going to the dentist (and I do not have a phobia of dentists like some people) - it was just a necessity to check off the box and move on.
Even in April 2016 when I was put on the 6 month squeeze plan instead of the yearly plan I had been doing since I was 34, I still believed it was much ado about nothing. How could cancer be in my breast? I cringe and worry about the women who do not go to their screenings. I know sometimes the screenings are wrong, that there are false positives and false negatives but without it, I do not think I would have any hope of beating this damn thing.
So what are the true risks of getting breast cancer? It is 1 in 8; 1 in 8 women will be diagnosed with breast cancer in their lives. So if you have 8 friends, one of you will get it. Are all of you going to the screenings and checking your own breasts for any changes? Not just lumps also skin changes, puckering, nipple changes, etc.
For me, even with my yearly (then 6-month) mammography screenings, we did find the breast cancer but it was not until I had my surgery that the true size of the cancer was confirmed. My surgeon guessed it would be about 6 cm even though he was not 100% sure of the MRI reading (dense breasts make for a hard read on what is cancer and what is not) - when I was operated on, I had 5.6cm mass in my right breast but only one tiny lump had been biopsied and confirmed as cancer at my first diagnosis.
This disease is insidious and smart - it hides behind healthy tissue and does not always represent as a tennis ball sized lump in your breast.
So, family history starts somewhere and I hope and pray it started and ends with me.
I was lucky to be included in an article by Tonic at Vice re what TV and Movies get wrong about Cancer. See screenshot below (link to article is here - tonic.vice.com/en_us/article/wjj8qy/tv-and-movies-get-cancer-all-wrong:
When I was diagnosed, I would notice more about other cancer stories in the media and news. I do not watch much tv or movies and I have made a conscious effort to avoid reading books that include someone with cancer in them because 90% of the time, that is the character that dies tragically - which I wrote about here --> stress-reducing-pastimes.html
This is just it - there is no one way to have cancer. It is a myriad, tricky and challenging disease that impacts each person differently. During my treatment, I saw a Facebook post in memorial to someone who had died from breast cancer and it triggered me to such an extent that I disabled my account immediately. I have now realized that every person has the disease differently and can now digest news without going into a tailspin about my own imminent demise.
There are still triggers - it is not like life is rainbows and unicorns when you are diagnosed with breast cancer. It is not. I do appreciate my life in a different way now and have the ability to live it without being knocked down with chemotherapy and radiation. The treatments for the disease can be harsher than how you felt walking around with it in your body - in fact, prior to diagnosis, I felt the best I have ever felt in many many years. I was working full time after years of only being able to handle part time work due to my obligations at home with my young children and husband's issues - all of a sudden, I was working full time each day and doing stuff on the weekends with the kids and it was like wow, I am really doing this. Then the cancer diagnosis.
It was shocking and yet you do not have time to let it sink in - I mean, you might need to take time because of health insurance or other issues but for me it was just let's hit the ground running and get this out as soon as possible. I was told incorrectly that the major NYC hospitals would take forever to take the cancer out of me. From first appointment to mastectomy it was 11 days. Just 11 days and it would have been even quicker if only my dense breasts had shown the truth right away instead of requiring a MRI and a PetScan.
For those of you out there who have not been touched by cancer yet in your inner circle (may it stay that way but keep in mind that I recently read that for those born after 1960, there is a 50% chance of a cancer diagnosis) just know that there are many different types of cancer and many different reactions to cancer by those diagnosed. It is hard for us but I know from experience it is even hard for friends and family - some of them knew exactly what to do from day one and others either hid away or made some gaffes -- I preferred the gaffes over those who made themselves scarce.
Do not be afraid to ask questions about the disease - do not think I am unable to process the information. I know as much as I can know about my disease, my pathology and even my "statistics". Statistics though, someone once said, are nothing but lies and damned lies. It is not something anyone can control.
Do not let your understanding of cancer come from tv or movies or even the news. I read articles about how so and so "beat cancer" after being diagnosed a few months earlier. Although they very well might have "beat" it, no doctor will call you done with cancer until years have passed post diagnosis depending on the disease, where it was, etc etc.
We who have the disease know this about cancer - it is insidious and it hides. Once it is in your body, you must do all you can to get it out. That is why I decided to start eating clean and amp up my exercise regiment and also to just practice calmness in any way that I can. As someone who sweated bullets during my pregnancies and just could not wait to give birth, I am now enjoying this time between and waiting to hear that one day, maybe, I will be called "cured" and until that day, I am just going to enjoy my life and accept the fact that breast cancer was in me and pray that it is gone for good.
You learn fairly quickly when you are diagnosed with cancer that there is a whole world you knew nothing about - a world you never wanted to learn anything about with its own terminology, procedures and treatments.
You recognize quickly that when you used to go to a doctor, you would maybe get an antibiotic or some other treatment option that would make you feel basically instantly better. Not so with entering the world of cancer treatment.
My doctors are wonderful and caring but I do know of some people that feel as though their doctors in cancer town and the cure are in some ways worse than the disease. I do remember sitting with my husband before my 3rd chemotherapy (AC - red devil) and saying, "I felt better with the cancer in my body than I do now."
It is true - the cancer was just sitting there, not causing any symptoms. In fact, I was the busiest I had been in years with my first full time job in 8 years and handling everything at home and beyond. Yet, cancer was not welcome in my body so I persevered with the treatments.
My surgeon is a doll - his role was complex but at the same time kind of "cut and dry" (pun intended) - he was able to go in, see all of the cancer and remove it. End of story. There are no "what ifs" for him - it is done to the best of his ability, he is confident and in fact after the surgery, he phoned my husband in the waiting room and said in effect, "I have removed all of the cancer, it is all gone."
My follow up with the surgeon was also one of positives - all about how the surgery was successful, how wonderfully I was healing (really, I am lucky - after surgery I never thought I would look "normal" again - it is definitely a new "normal" but it is okay to me) and to set up my appointment with the oncology department.
This is where things change - this is where you would hear the ominous music if this were a movie. The surgeon knows this is what it is - I went in and removed it. The oncologist sees everything else AFTER surgery and her tools are limited to medications and concoctions that flow through the bloodstream and are not as precise as scalpel and anesthesia.
My first oncology meeting seemed to be a hard sell to get me to agree to do the chemotherapy while I was ready and willing to do it that DAY if I could. It was a more grounding meeting discussing all of the potential side effects even the ones clocking in at less than 1%. It was sobering after the "success" of the surgery but I kept trying to think positive. I had tons of help and my wonderful guru's advice on how to survive treatment (read about it here tricks-for-treatment.html).
My husband asked the oncologist to help me calm down and explain to me what could happen and my oncologist (bless her, she meant well) began talking about (paraphrased) "..well either the cure works or you wind up with stage 4 and that cannot be cured."
That was not the pep talk he was hoping for from the doctor. But this is it, you learn real quick in the world of cancer that there are no "definites". And you also realize that your whole life you have been duped into thinking anything could be a definite. You have to believe you will be cured, you have to have faith you will be cured and yet, you still might not be cured.
The idea is though that this is life - it is not always fair, you do not have guarantees and all you can do is stay positive and focused on what you can do/control, which is not as much as you thought you could control before cancer diagnosis.
This is oddly freeing, you know you can only do so much so you stop trying to control the world with your mind. You just accept this is where you are and how to maintain your life becomes most important.
Chemotherapy and Radiation are extra layers to make sure that the surgeon's precision at getting all of the cancer out is solidified. There is always the possibility that a cell or more escaped and moved elsewhere in your body. My petscan was something that gave us some level of confidence that the cancer had stayed localized to the breast area but the fact that it had gotten into some of my lymph nodes meant it was time to layer on the treatments.
And layer them we did. Now we just wait. But I prefer to do what my oncologist told me to do. She said to just forget all of this has even happened unless you have to deal with it again. So that is what I am doing - believe it or not - even though I write about it I am exorcising it from my brain to the keyboard. Making room for the memories I am making and the new life plan I am following - less of a plan and more of a balance, of getting to be me, Lisa and not letting fear control me. I am me, I am here and that is all that matters for now.
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