1 in 8…

1 in 8

I’m going to dig deep on this one and pull back the bandaid to share something that I’ve been struggling with.  Normally, I’d be quoting uplifting scripture verses that have helped me along the way, or provide a ray of hope.  I only have one that I keep repeating over and over again, as I work through sharing this story.  “I can do all things through Christ who strengthens me.” Phillipians 4:13.  This verse is embedded in my core, deep down and I have carried it with me for several years

I am about to share an experience that I never thought I would have to face.  Something that hit me like a freight train, and something I’m learning to navigate on a daily basis.  I thought that holding it all in or covering it up made it all feel less of a big deal.  I thought that just sharing with my family, colleagues, and “Village” would make it ok.  But I’ve quickly come to learn that I’m drowning with its weight.  I needed to put this all into words, to help unpack everything I’ve been feeling and to accept it once and for all.  To be honest, I’m not OK.  

March 10, I learned I had breast cancer.  It was considered DCIS – Stage 0, which stands for Ductal Carcinoma in Situ –  non aggressive cancer in the milk ducts. My world began spinning when I heard those words.  I was stuck between shock, fear and disbelief.  There it is… I said it… I have breast cancer.  I keep trying to say it out loud to own it and accept it, but gosh darn it, it sucks and it’s extremely hard. Like a toddler throwing a temper tantrum, I want to kick and scream because I don’t like it!  I don’t want this!

“About 1 in 8 women will get breast cancer during her life. Although breast cancer mostly occurs among older women, in rare cases breast cancer does affect women under the age of 45. About 9% of all new cases of breast cancer in the United States are found in women younger than 45 years of age.”
https://www.cdc.gov/cancer/breast/young_women/bringyourbrave/breast_cancer_young_women/index.htm

I am 1 in 8.  I am one of those woman that is younger than 45.  I have zero family history of breast cancer and here I am, face to face with the big C.  I have breast cancer.  There… I said it again.  

So, allow me to let me take you on the journey.  At my regular annual check up in January, my OBGYN reminded me to get my annual mammogram, which then led to a second mammogram.  The Radiologist recommended a stereotactic biopsy of two suspicious areas. Apparently my breast tissue was dense and had areas of calcifications so they wanted to get a better look.  When the biopsy was recommended, I didn’t really panic too much, I heard that people get biopsies all the time and oftentimes they come back normal.

So the day of the Stereotactic Biopsy arrived.  I took the day off from work for an afternoon appointment.  After shuttling the kiddos off to school, I started my morning with a lovely 4 mile run.  I focused on being present, prayer and the beauty of the world around me.  I felt complete peace and serenity, ready to take on whatever this little procedure would entail, because after all, it was no big deal. My husband Albert and I checked in for the appointment.  They indicated it could take 2-3 hours, but in reality took 3-4.  It was horrible and absolutely miserable.  I felt like I was locked in a torture chamber.  I had to lay completely still, holding my breath for several series of images for the duration of the procedure.  Remember, this 3-4 hour procedure  equaled an absolutely brutal experience.  By the time I was out of the appointment, and back in the bubble of our vehicle, I lost it.  The adrenaline and anxiety that I held in during the procedure rushed out like a flood.  My face became a sea of salty, rolling tears.  It took me some time to compose myself, and accept what I had been through and “try” to carry on with my day as much as I could.  After all of this, I was completely worn out and exhausted.

I ended up taking a few days off after the procedure.  It was more painful than I thought it would be and I remained pretty sore, bruised and swollen.  I napped frequently, and changed out ice packs to help comfort the pain.   Then, it came… the phone call that we were anxiously awaiting. Albert and I sat there focused on every word that was coming through the other end of the call…  “It’s Ductal Carcinoma in Situ… Cancer”.  I was not expecting this news.  WE were not expecting this news.  Tears began to form in our eyes. We were frozen with disbelief and I felt my stomach drop. Questions were swirling but we couldn’t possibly gather our thoughts to allow them to roll off our tongues.  The next day, I had a follow up phone call with a Breast Nurse Navigator from the Cancer Center.   I listened intently to every word and took notes in order to process the flood of information coming at me.

After receiving the diagnosis, I was scheduled for an MRI to get a full view of both breasts.  This was my first experience of having an MRI.  It wasn’t horrible compared to the stereotactic biopsy, so I was able to breeze through it.  I ran through my favorite playlist of songs in my head over and over again throughout the lengthy process.  I even sang a “Do your boobs hang low, do they wobble to and fro…” just to give myself a chuckle on the inside.  For whatever reason, I stumble upon laughter to help me get through uncomfortable situations.

A few days later, I attended my first breast cancer clinic, which was an exhausting 5 hour day.  The best way to describe this experience was like speed-dating with medical professionals- with the added bonus of sitting in a paper poncho, exposing myself with each person that I met.  My morning consisted of meeting the team of Oncologist, Radiologist, Breast Surgeon, Social Worker, Genetics Counselor, and the Breast Nurse Navigator (just to name a few.)  Modesty was thrown out the window and handshakes were quickly replaced with “let me take a look at your breasts.”  After the marathon of morning appointments, they let me go and asked me to return that afternoon.  The medical team met over lunch talking about their cases and determining the best plan for treatment.  Albert and I went to lunch as well to process the morning information and returned for the afternoon appointment with the Breast Surgeon, which is when we would find out my fate and treatment.

We left the morning appointments thinking a lumpectomy, followed by radiation may be the recommended plan.  After meeting with the Breast Surgeon, we learned a lumpectomy was not an option based on the MRI results. There were three other areas of the breast that appeared suspicious.  She would need to remove too much of the breast tissue and recommended a mastectomy of the right side, along with a removal of the sentinel lymph node.

The next few weeks were a whirlwind of lengthy doctors appointments, procedures, consultations and a plethora of information.  I obtained a second opinion from another esteemed healthcare system – all with the same diagnosis and treatment plans. The whole process was exhausting and emotional.  (I realize I may sound like a broken record about exhaustion and being emotional… but it’s real, true and constant).   I suddenly was faced with decisions on the best treatment plan for me, based on the information I had and guidance of my medical team.  

 It was by far one of the hardest decisions of my life. I chose the aggressive route to nip this in the bud… or breast I should say.  I decided the best thing for me was to proceed with a bilateral mastectomy, with reconstruction occurring immediately. This would allow me the peace of mind that my fight against breast cancer could become my victory. 

Based on the areas of concern, nipple sparing was not an option in my case.  My breasts served me well for the first 44 years of my life.  They helped me breastfeed and nourish 3 beautiful babies which felt like a major accomplishment.  After the kids had sucked the life out of them, there really wasn’t much left other than the intimate component (you know, one of the 7 erogenous zones according to Monica from FRIENDS). 

May 3 was the day that I would officially say goodbye to those mounds that had helped identify me as a woman.  I arrived in the early morning hours in preparation for an 8-9 hour surgery. The Anesthesiologist said it would be the best nap I’ve ever had.  The last thing I remember of that morning was Albert leaning in to give me a kiss and telling me he loved me.  My response to him wasn’t a sweet proclamation of my love in return… Instead, I gazed into his eyes and responded with “You have four eyes,” and then off to la-la-land I went.

The outcome of surgery went well so I am told.  The Sentinel Node had no indicators that the cancer had spread, so the Breast Surgeon was able to remove the tissues from both breasts (she managed the first four hours of surgery).  The Plastic Surgeon then spent the remainder of the day working on reconstruction.  He inserted Tissue Expanders, which are basically a balloon filled with air, and then eventually saline to help stretch the tissue in preparation for the final implants. I had four drains coming out the side of my body suctioning out the excess fluid around the muscle, expanders and remaining breast tissue.

One week post surgery I ended up back in the ER (on Mother’s Day actually), and was admitted to the hospital for excess bleeding out of one of the ports.  After getting fitted for an extremely tight fancy mastectomy bra, I laid there waiting and praying that the bleeding and drainage would return to normal.  Apparently compression is said to help with the drainage.  Albert and I joked about our “date” and how lately we had been using our date time away from the children in a medical capacity – oh so romantic. Fortunately, I was able to get out the next day.

The three weeks post-surgery were a royal pain and a bit of a blur.  I slept a ton, managed the pain as best I could, and slept in a recliner with my arms away from my body.  I was unable to shower because the drains and tissue needed to remain dry and clean.  Thankfully I found some amazing body wipes that are super thick so I was able to keep myself clean in all the other ways. I found myself a huge fan of dry shampoo, head wraps and bandannas just to manage the oiliness of my hair.  I had scheduled weekly appointments at the hair salon to get my hair wash led and dried, which made me feel like a brand new person (sort of). 

I had appointments with the plastics office weekly to check the incisions and drains.  Once the drains were finally removed, the glorious day of actually taking a shower had come.  It was the longest, most exhausting shower I had ever taken.  I realized throughout the recovery period, I had lost the ability to lift my arms higher than shoulder level.  The joyous moment of being able to FINALLY wash my hair was here and I couldn’t do it… The moment I could finally have a sliver of independence to do something for my own self care, and I found myself frustrated.  I just couldn’t do it.  I broke down in tears, and submitted back to needing assistance.   Shortly thereafter, I began physical therapy to retain the motion and movement of my arms. It took me about one month, and several painful exercises to finally accomplish lifting my arms above my head.  I started lifting weights and was told to begin with a whopping one pound weight.  Let me tell you… one pound is extremely heavy when you’ve lost the strength you were once used to.  I was left feeling sore, and defeated… I’d try again the next day.

After the drains were removed, the expansion process was ready to begin.  Tissue Expanders are a unique device.  They have a magnet at the base of them, which allows the medical team to find the port area with a magnet to insert the needle.  This is a very precise process because if they were to miss the port, they would puncture the expander.  Once the needle was injected, it was connected to a large syringe. The first step was removing the air from the expanders.  As I lay back on the procedure table of the doctors office, I watched them suck the air out of my fake breast with a syringe.  I glanced down and looked at the remains of what used to be.  The image shocked me.  My eyes began to burn and tears formed in my eyes.  I shot a glance at Albert and his eyes were glassy as well.  I lay there looking at a completely wrinkled up, deformed balloon of skin.  A cloud of grief blanketed me as the reality of the situation and feeling of loss began to sink in.  They worked on one breast, then then next.  After the air was removed, they inserted the saline into the expander.  The process of filling the expanders lasted an additional 3 weeks until the maximum expander size was reached.  

Throughout the recovery, expanding, and physical therapy processes, I was able to have follow up appointments with my Oncologist and Breast Surgeon.  Both appointments brought wonderful news.  There was no evidence that the cancer had spread anywhere else, and there were zero traces in the left breast.  The lymph nodes were completely clear.  They were able to get clean margins.  I was cancer FREE!  No further treatment was needed!  No Radiation!  No Chemotherapy!  No prescription medications!  Nothing but yearly visits!  I should be shouting “Hallelujah – Praise the Lord!  I’m Cancer Free!”  But I’m not out of the woods yet… Now I’m one of those lucky ones that still has to identify as “having cancer” until I’m 5 years out and can officially say “I have beat cancer!” 

So what now?  I wait…and wait, and wait some more with these lovely expanders.  They look alright – nice and perky I suppose, but are awful.  Tissue expanders are no joke and are extremely uncomfortable.  They feel like I’ve got softballs duct taped to my body that allows for zero movement.  I’m in constant discomfort.  I continue to recover, and work on regaining strength, mobility, and finding a new normal.  It is far from easy though.   I have the pins and needles feeling in my upper chest where the nerves are “waking up”.  I have phantom pain randomly that feels like a stab.  What is that you say?  It’s basically pain in the breast that isn’t there anymore.  I have constant radiating or shooting pain and discomfort in my right underarm area and bicep from the side the sentinel node was removed.  I do a daily lymphatic drainage massage to help decrease any swelling in the area.  I have to gently brush or tap my arm to wake up the nerves that have gone through trauma.

I’m scheduled for the exchange surgery later this year.  They’ll remove the expanders and insert the implants, do fat grafting to provide a cushion around the implant to help support it.  There will be another period of time for recovery, and potential procedures down the road.  I just keep having the faith in my medical team to guide me and provide amazing treatment.  

Oh, and of course there is the issue of the mental state that all of this has set me in. I constantly feel like a hot mess. Don’t get me wrong – I am beyond blessed to have a wonderful network and resources of people that are helping me through all of this (between family, friends, counselors, etc.).  It’s still extremely difficult and completely sucks. It’s a constant emotional roller coaster.  I should be celebrating so many moments and be grateful for how far I’ve come… but it’s so incredibly hard.  I know how fortunate I am, and how others’ battles are much worse than mine.  Every day I look in the mirror, I see two scars that are a reminder of what I’ve been through.  I see battle wounds.  I see loss and sadness. Maybe someday, I’ll shift that image to strength and beauty… Maybe… who knows… I’ll just have to wait until that time comes.

I can’t help but think and wonder when the other shoe will drop.  What’s next?  Clearly, I’ve faced quite a lot already in my life. Clearly I can handle whatever is thrown my way.  But honestly, I’m physically, mentally and emotionally exhausted.  ALL – THE – TIME.  So when you see me, sure I may be smiling, enjoying my children watching them do what they love, or having a good time with friends and family… but deep down, the truth is… I’m not OK.  I don’t think any of us are really OK… we’ve all got battles and scars.  We’ve all been through something.  That’s part of what helps us grow and makes us who we are.

So dear reader, long story that turned extremely long… this is the current chapter of my life that I am living through.   I’ve ripped off the bandaid, and exposed the most sensitive topic I’ve had to face.  I am 1 in 8.  I am one of the many faces of Breast Cancer.  I am a Warrior, and I will get through this… one step at a time, one day at a time.  I will survive this!

The Lord is with me, that I know.