Author: Michelle Beck

Earlier this year, I was asked by Breast Friends to speak about my experiences with their organization.  Thankfully, I am an “over-sharer” and it was so easy to speak about something I am so passionate about.  So, I did my hair, put on a lot of make-up and went in for my film debut.  I was asked to speak for a few minutes; I think I went on and on for at least 20 and they edited down. A lot.  🙂

I am joined in this video by other awesome survivors who have found and benefited from the programs and women of Breast Friends.  Please take a look.  I am hoping to eventually write a book about my cancer journey and publicly speak about it, to inspire and motivate others to keep on fighting and kick cancer’s ass.

 

One year ago today, the surgeons removed my breasts.  (This photo was in pre-op after a couple Xanex, trying to be positive.) It was such a HUGE event in my life.  I mean, I voluntarily signed paperwork and asked the surgeons to do it.  It is still mind boggling to me when I think about it.  When I found out that I had “cancer” (if you whisper it, doesn’t it make you think of St. Elmo’s Fire? “Prison.” “Drugs.” I may need to watch that soon!) for the second time, a new primary occurrence in my other breast, it was an automatic no brainer. They had to go.  Bi-lateral mastectomy, here we come.  When I hung up with my nurse navigator after getting the news, I just sat and cried and had visions of the possible future treatments which the next year would bring.  Some have come to pass, others never did (YAY, no chemo!) Regardless, the past year has been the hardest of my life. Let’s just say that this is how I have felt the past year: wanting to keep my eyes shut tight to ignore my new reality and the pain of it all.  Instead, I put on a smile and try to be a warrior.

Really, I didn’t need my breasts anymore.  I was not going to have any more babies 🙁 and they didn’t even work as milk trucks anyway.  The bones in my son’s skull were a bit out of alignment, as was his palette, so breast feeding did not work for him despite all kinds of OT, PT and lactation sessions from the beginning.  Don’t think I didn’t bawl my eyes out over this.  I cried every time I pumped so I could bottle feed him breast milk.  And just those few months of having my breasts full of milk left them large and sagging when things went back to normal.  I had often joked that when I was done having babies, I would get a boob-lift.  Then I got cancer the first time and decided that after a small lumpectomy and radiation, I would leave them as they were, saggy and all.  They were not so pretty anymore, but they were mine.

There are a lot of body parts that we can live without: appendix, spleen, gall bladder, all sorts of limbs and even breasts.  However, breasts are one of the outwardly identifying parts of a woman; one of the first things people see, even if they are not trying to look at them.  Their growth signals the transition from being a girl to a woman.  Breasts can feed children. Breasts can be a part of the sexual experience.  They can get in the way when doing things. Some women want them bigger, some want them smaller. But as a woman, I can say that even if I don’t need them, I want them.

But knowing that I didn’t need them anymore and being OK with it are two very different things. It has been a year, and I am still not OK with it.  The replacements are fine.  But as most people know, “fine” is anything but.  I constantly feel like I am wearing a bra and I can’t take it off when I come home at night.  My chest is just tight.  I have muscle spasms where my chest, especially on my left side with the latissimus back flap, feels like a band has been wrapped around me and I am being squeezed.  I am uncomfortable all of the time.  I have asked women who have experienced reconstruction and the majority of them say it takes at least 2 years to start to feel more “normal.”

My reconstructed breasts look funny.  Not funny, haha funny either.  My left breast has a football shaped scar on it where the muscle and skin was replaced.  My right breast has a horizontal, red scar all the way across it.  Since I had 2 different types of reconstruction (due to radiation 5 years ago), they are shaped differently.  Not a lot, but I can tell.  And have I mentioned, no nipples? My plastic surgeon did an amazing job for what she had to work with, but “the old gray mare, she ain’t what she used to be.”  I will feel better when I am done with my tattooing process, but that will not be complete until October.  Most days I look in the mirror and it is what it is and then some days, I take a quick glance and think “what the hell happened?”

My brain knows that I gave up my breasts to rid my body of cancer and to hopefully prevent it from returning.  My vanity still has not caught up with that yet.  Yes, I have the reconstructed breasts and if you just met me, you would have no idea that they are “fake.”  It is just not the same.  I miss my old, squishy boobs, but the new ones will help keep me alive longer.

Two months after my mastectomy, I had another surgery to remove my uterus, ovaries, Fallopian tubes and cervix.  Do I mourn these organs?  Hell no, this surgery meant no more periods!  I am ignoring the whole menopause nightmare; that’s a post for a different day.

Today, I mourn the loss of my breasts, but I am also celebrating my life.  It’s worth it.

Just when I think things are on track, shit happens. Friday night as I was finishing making dinner, I sliced my thumb open on the lid of a tin can. Immediately out of my mouth came “MOTHERF$*KER!” J ran up to me almost quicker than I could get my hand under the water, “MOM, that is an unusable word!” “Yeah, sorry kiddo, it really hurt.”  At first I was in denial that I needed stitches, well, mainly because I was hungry and I had carne asada and homemade pico de gallo waiting for me. But. It. Would. Not. Stop. Bleeding. Nate told me right away that it needed stitches and as hard as it was for me to give in, to the urgent care we went. I found out that I have an incredibly high tolerance for Lidocaine. The PA gave me 3 ml in 2 shots; I told the him that I could still feel pain. He was skeptical, but gave me another shot, waited a few minutes and then started the first stitch. Let’s just say that Nate heard me scream from the waiting room. So after 4 shots and 6 ml of Lidocaine to numb my thumb, I now have 4 stitches. And the shots itself are no joke. You would think I would be used to them by now, but apparently not. They HURT!

Trying to do anything with giant gauze wrapped around your dominant hand thumb is a challenge. The wrapping got stuck on my brush and came off. It got stuck on the pillow as I was getting in bed and came off. Ouch. It was throbbing and any direct pressure on it was a sharp pain. We wrapped it in a ziplock bag and electrical tape on Saturday so I could shower and keep it dry.  Ugh. Putting on makeup is hysterical. Trying to just use the fingers on my right hand was not enough pressure to get anything on and the left was too hard and looked like clown makeup so I have given up on makeup for the time being.  Somehow I managed and was able to get out the house; everything just takes sooo much longer while I adapt my hand movements to not cause any further pain.  Today I had to finally give in and wash/dry my hair.  This whole process with a ziploc bag around your right hand is a nightmare.  My left arm has limited range of motion from the mastectomy and my right hand (the “good side”) is restricted with a giant blue thing.  Nate calls is my “blue banana thumb” and sings some song that I don’t know.  I am just over it.  I feel so helpless.  Nate is traveling this week so we went to Costco and got a bunch of pre-made dinners since the kids apparently still want to eat and the last thing I want to do is cook.  Typing is also a bit of a challenge. I use my thumb was more than I would ever thought.  I go back in to have the stitches checked in 4 days and hopefully they can be removed and I will just be left with a nice 1 inch scar on my thumb.  From now one, I will listen to my mother and not put the tin can lids in the trash. Lesson learned.

 

On January 5, I had the honor of joining the founders of Breast Friends on their weekly radio program to discuss my experience with the “Thriving Beyond Cancer” Retreat which I attended in November. The whole hour is a great listen, but my part starts around 13:45. Check it out here!

I think I only said “uhm” 5 times, I did not cry and I spoke slow, so overall, I count this as a success!

 

 

As the clock ticks down on 2017, I am not sad.  I am ready for this god awful year to be over.  I don’t want to rehash everything in my mind, let alone on paper.  Let’s just say that I am really over it.  I was hoping to end the year on a positive note, being able to give a good report after being on my newest med, exemestane/Aromasin, for the last month, but no.  The side effects have kicked in and the last two weeks have been getting worse.  I have pain in my joints.  Everywhere.  I wake up in the morning and my fingers ache.  One of my arms is always in pain, depending on which side I am sleeping on and how much the little pillows under my armpits have moved during the night.  My knees and my hips are acting like I am 93 years old and don’t want to move very much or very fast.  Kneeling down to do laundry is painful.  We have been lucky enough to go see a few movies over the holiday break (go see the new Jumanji – it is great!), which I love, but getting out of the seats after a few hours is rough. I have been spending time resting in bed or on the couch with pillows under my knees and Deep Blue rub by Doterra on them to help the pain.  I have insomnia again.  My naturopath gave me a “fall asleep” capsule which helps, but I can’t stay asleep.  The numerous hot flashes every night have me waking up and then throwing off all of the covers.  I then fall back asleep and wake up again because I am freezing.  Over and over again.  This is the third (and final) medication which I could be on to help prevent my body from producing estrogen which my cancer fed on.  All three of them gave me similar side effects and it is just a matter of deciding now which one of them is least of the evils.  Damn it.  I am pissed.  I do not want to spend the next ten years of my life feeling like this, but since I have had two estrogen loving breast cancers, and the second one while I was on tamoxifen, neither I nor my oncologist feel that I can forgo this preventative medication.

Better in pain than dead though, right?  I am not in debilitating pain, just a “pain in my ass” pain.  I use lots of things to help: Aleve, Epsom salt baths, CDB oils, essential oils, massage therapy, acupuncture, cupping and wine.  Wine and massage are my favorite, but wine often gives me a headache the next day and starting tomorrow, I have a fresh deductible and out of pocket max so my massages will no longer be free.  So I will live with the pain, try not to complain too much and just keep moving on with my life every day.  I have it A LOT better than many people, and I am very lucky.

Tonight many people will go out or hang out with friends or family.  We chose to stay in and relax and planned to get to bed early.  It has been a rough year in our house for more reasons than just my health, so it is a night to just be, appreciating the lives that we do have and each other. That was until we got sidetracked by Ancestry.com.  With Christmas money, I bought myself an Ancestry DNA kit and I registered it today. Tomorrow, I will spit in a vial and mail it in and then wait 12 weeks for my results.  I really want to know more about where I come from beyond my grand and great-grand parents.  I think I am mostly German/Western European, but truly have no clue where my family is from before they came to America.  Tonight, we turned on a movie and I began to fill in my family tree. By the time the movie was over, I had completed all of the information through my great-grand parents using the basic free service.  I handed my iPad to Nate to show him what I found and he stole it.  Literally for the past 2 hours, he has been filling in his family tree (up from Jackson) and even submitted for the trial membership so he can go farther back and add in more information.  He keeps telling me “Back to Denmark now. . . In Germany now, etc.”  I had no idea he was interested in this too, but it really is addicting.  So I guess, tomorrow, AFTER I take down and put Christmas away, I will be back on Ancestry.com doing more research on my side of the family.  I do think this an interesting way to ring in the new year, by finding out about our past.  Happy New Year to all.  Appreciate what you have and make the best of it.  May 2018 bring us all health, peace and love. And a vacation.  I really could use one of those!

 

December 7, 1941 was a historic day for the United States.  Pearl Harbor was attacked and FDR asked Congress to declare war. December 7, 2012 was a historic day for me.  I was diagnosed with breast cancer and hard to start my own war, against my own body.  I will never forget my diagnosis date; it was so life changing.  5 years ago today, I heard the words that changed me as a person: “You have cancer.”  I should be celebrating 5 years and cancer free, but that was not in the cards for me.  January 13, 2017 I heard those words again.  Seriously?  This had to be a joke, right?  But no such luck. I had a new primary occurrence in my other breast.  Damn it.  That led to the hardest year in my life. 2017 has truly been awful.  But then, when I sit back and look at my life and really think about it, I am so blessed.  I have my family and friends who would do anything for me and who have gone above and beyond this year.  We have a home, jobs, food and presents under the tree (or sitting in a huge pile of Amazon boxes waiting to be wrapped) and truly are fortunate.  While, it hard been hard, it could always be worse.  I am stronger than this.  I am thankful for every day that I have with those that I love.  Today, I got to do art with my son in his 1st grade class.  It does not get much better than this.

On Friday, I had an appointment with my oncologist.  We discussed how I was feeling which is much better since I have  been off the last medication, letrozole, for over 5 weeks.  Unfortunately, neither I, Nate nor my oncologist are comfortable with me not being on any medication which will hopefully help prevent new breast cancer from forming.  Today I started to take Exemestane (Aromasin) which is the third aromatase inhibitor available. I have already tried anastrozole and letrozole and the side effects were pretty awful. We are hoping the third time is the charm as this is it. There is nothing else to try.  The listed potential side effects are similar to the others: hot flashes, joint and muscle pain, nausea, etc., but the composition of it is different than the first two so it may be less painful for me.  I am hoping that I continue to feel decent and the side effects are minimal. If so, I will be on this medication for the next 10 years.  If not and I feel awful, we will need to evaluate which of the 3 I can “live” with and go from there. Fingers crossed!

 

On this Saturday of Thanksgiving weekend, with the Oregon Civil War – Ducks v. Beavers (Go Ducks!) on in the background and a Moscow Mule in hand, I sit here and reflect on the many things in my life to be thankful for.  Despite everything I have been through this year, I am more fortunate than many.  While it has been hands down the most difficult year in my life, I am alive to live it and see another year.  I am cancer free and hopefully will stay that way.  I did not have to have chemo so I got to keep my hair; that’s good, while my hair makes me crazy, I am so glad I kept it.  I am not sure how I would have rocked the Bald is Beautiful stage.

My support system is wide and deep.  My husband deals with the hardest times: when I am sobbing the night before each surgery and the fluctuating moods which come with the surgically induced menopause. He is my rock. My family took turns being with me after each surgery, washing and drying my hair, entertaining Jackson and playing with my dog.  My friends delivered delicious meals and snacks to my family for months and took Jackson for play dates and weekends so I could rest.  My dog would not leave my side and gave me comfort and snuggles and did not care when I held tight and cried into his fur.  Friends of friends sent me encouraging quotes.

My medical team is fabulous and dealt with the stupid F’in cancer quickly and expertly.  My nurse navigator who has been by my side both in 2013 and 2017 is also a survivor; she knows what I have gone through because she has been there.  She is the one who actually gave me my diagnosis this year and I was so comforted by her despite learning that I had a new cancer occurrence.  I ask her all of my random questions and she allays my fears.  The first time I met my plastic surgeon, she told me that we would become close as I would see her a lot more than the rest of my doctors combined and she was right.  While she was doing my expander fills, we would chat and talk about life, anything to distract me from the needle in my breast injecting fluid.  She used her skills to create my new breasts and some pretty great cleavage.  Unless you see me naked and the scars which cross my chest, you would never know what I have been through.  The naturopath who has been doing my acupuncture and cupping and the massage therapist who has been working on the range of motion in my arms are my new best friends. I am in the office at least 3 times a week and it is a place of healing and relaxation for me.  I never thought I would look forward to weekly acupuncture, yet here I am.

I am thankful for the wonderful new people I have met this year.  I have started to volunteer my time at Breast Friends, a support organization for those with breast, ovarian and other women’s cancers and their families.  So far, I have been helping with very basic data entry, getting out mailings and helping for an open house, and I hope they are going to utilize my skills for other things going forward.  Everyone I have met who works for the organization or volunteers are fantastic people. It just feels so good to have somewhere to go where I can help others and give back.  A bonus is that it is 1 mile from my house.  Jackson has also started as a Cub Scout and we have hosted a couple of den meetings.  He is thriving in the activities and has made new friends; I have also made new parent connections and am enjoying helping out.  Today we walked the neighborhood near his school and handed out bags for holiday food donations for those in need.  I will probably end up as a leader next year; I have a hard time letting anyone else be in control.  🙂

I am beyond blessed with life’s basic necessities.  We have a lovely home and amazing neighbors.  Nice cars which take us where we need to go and where we want to go.  Food on our table and time and money to go out.  Family that we actually enjoy and plenty of friends to spend time with.  I am so fortunate that I am able to be at home and not work while Jackson has been young and I have fought cancer.  I appreciate it all and know exactly how lucky we are.  Yes, we have both worked very hard for the material things in life, but we have also worked on our relationships.  You have to be a good person to be surrounded by good people.  It all takes work, but it is very worth it.

Tonight, I am thankful for Christmas lights and to be right here to see another holiday season. Yes, we are those people with the blow-ups.  There are more decorations in the garage which need to be added, but the rain started and I think we ran out of extension cords and multi-plug thingies.  I am not sure how thankful our neighbors are, but Ho Ho Ho!

I am thankful for it all.

Last weekend I attended a “Thriving Beyond Cancer” workshop put on by Breast Friends.  There were 8 survivors in attendance.  Most of these warriors have been in active treatment of some sort in the past 2 years, in varying journeys: some with a lumpectomy all the way up to mets (cancer lingo which means the cancer has metastasized to another body part) .  No matter the stage of cancer or treatment, all of these women are fighters who want to thrive! The weekend was led by Sharon Henifin, the Co-Founder of Breast Friends who is also a Certified Life Coach.  Yvonne Nydigger, the Patient Service Counselor was also on hand to support us and fed us very well with delicious home cooked meals and snacks. So many snacks!

The first night was all about sharing our journeys and what we wanted to get out of the weekend. I introduced myself, “Hi, I’m Michelle and I am an over-sharer.”  Sometimes I do feel that I am telling what I have been through even when it is not pertinent. It is not that I want sympathy, more that I want to connect with people and that is a pretty quick way to connect with someone, to tell them you had cancer and then move forward. It also is an easy way to explain why I move slowly, I nap almost every chance I get and why I can quite often be found taking off my top and socks, no matter where I am when the hot flashes hit.  But it is amazing to share your story with a roomful of other women who know what you are going through, whose breasts, which we have always been “told” by society are one of the main parts of being a woman, have been either removed or tampered with and then somehow keep going.  The women who participated in this weekend are truly warriors.  We have all chosen to get up every day and move forward despite the setbacks we have all experienced.

Over the course of the weekend, Sharon led us in identifying our fears, thinking about what our futures could look like, what cancer has done in our lives which was positive (this one took a while for me, but then I remembered: no more bras, no more periods and most importantly, it has brought so many amazing people into my life) and to also set goals for the future, both short term and long term with identifiable steps.  We also made amazing vision boards.  Mine looked like an explosion with words and pictures going in all directions.  It included love, family, positive phrases, Ellen DeGeneres (I soooo badly want to go see her show or even better to be a guest one day!), Adele (her voice is just so amazing) and P!nk (I just love everything about her honesty and the new album is so heartfelt and resonates with me especially the song ‘Wild Hearts Can’t be Broken).  But I digress. It was really interesting to see how people created their boards.  Some were horizontal, some vertical, some very linear and some even had their items going off the poster board.  In the past, mine would have been very structured and clean.  I really admired one which was like that, but mine was such a departure from that and I think it shows where I want to go in my life.  Away from the norm and in new directions. It is currently up in my closet where I will see it every day and it will remind me to move purposefully toward the future, not to just let it happen to me.  There are many messages which I took from the weekend.  While cancer does not define us, it is a part of who we are.  We need to move forward, work toward goals and continue to take care of ourselves mentally and physically.  This is one of the suckiest groups to ever join, but the other members are phenomenal.