DIEP Flap Reconstruction

Reconstruction, oh what a word.  Well the next step in my journey, path, process, <insert your favorite term>, is a big step.  On April 21st I will be having my final reconstruction surgery.  I will be having DIEP Flap surgery at the Hospital of the University of Pennsylvania in Philadelphia, also known as Penn Medicine.  Penn performs this surgery more than any other facility in the US and has a success rate over 99%.

DIEP (Deep Inferior Epigastric Perforator) Flap is an intense surgery that involves taking tissue, veins, and arteries from my abdomen and essentially transplanting them to my chest.  That is the simplest explanation, I’ll give a little more detail down below so those that are somewhat squeamish can bail out before then.  You may recall that I fainted during my first biopsy so I completely understand, as fate would have it I am not as squeamish as I was two years ago. 🙂

I mentioned that this is an intense surgery, I typically understate things and am probably doing that here. The surgery itself will likely be about six hours long, my surgery will be a bit shorter than some experience, since I already had my bilateral (double) mastectomy, my surgeons will not have to remove any breast tissue.  I will be in the hospital for five days including the day of surgery, the nurses and doctors will follow me closely during the hospital stay to ensure that the blood supply to the “Flap” or transplanted tissue takes and stays working.  Because Penn has such a large focus on this surgery I’m not too worried, I know that I’ll be in good hands, the best, actually.  I will come out of surgery and from the hospital with four drains (an all time high for me), these drains are basically tubes that go into  little grenade-like things, I like to call them blood grenades.  They’re annoying, somewhat uncomfortable, but they perform an important job of preventing fluid build-up in the area of surgery.  I’ll have two drains on my chest and two on my stomach, they’ll remain in for 10-14 days, perhaps a bit longer.  I will be staying in Philadelphia for about two weeks following surgery, I may be able to go home sooner but we’re planning on two weeks.

All of this does leave me a bit nervous. Being four hours away from home, relying on the kindness of family and friends in CT and PA, having another significant surgery, going back into recovery mode, etc.  I don’t doubt that this is the right choice for me, but I know the road ahead will have pain and work to get back into full health.  Before my mastectomy I had no fear but also no firsthand knowledge of the extent of what I was facing.  Now I have a much better picture of recovery.  I’m not fearful, but I’m aware, much more aware, and that’s OK.  Please pray for me, for us, during this time.  God has been beyond faithful to us, meeting our needs and giving us strength when we had none.  We will be praying for a smooth surgery with great veins and arteries to use, good pain management, smooth healing with no complications, and a good transition for all of us.  Please hold our girls in prayer too, they will be cared for by my parents (pray for them too) and some friends.  I expect they will thrive, but it’s been a long road for them as well.  Matt or I will keep you posted as we continue!! 😀

—— Bail Out Warning ——

DIEP Flap has been around for several years now.  It involves cutting a hip-to-hip ellipse shape (or eye shape) on my abdomen.  Then the primary veins and arteries circulating blood are found, these are followed further into the abdomen by cutting through the fascia and muscle and tails to both vessels are cut.  These arteries and veins will be attached to the mammary vein and artery near the sternum.  The tissue (aka fat) will then be used to form a breast or foob (fake boob).  The fascia and muscles in my stomach will then be sewn back together and my skin pulled together.  For the curious, here are a couple links: a basic description of DIEP Flap and a really interesting abridged video of a DIEP Flap surgery.  I actually watched the video and I did not pass out (!!!) it’s really interesting and further confirmed my conclusion that these surgeons (really all of my Docs) are rockstars.

New Year, Same Me

With the calendar change and a significant note of the passage of time I so often and easily think about resolutions I can make and everything that I can change or do in the new year.  Resolutions are great but I don’t do well with them.  I can’t actually remember the last one that kept, I’m not even sure that I’ve ever made one.  Research tells us that goal setting is a good way to get things accomplished, and I do well with challenges and targets to meet.  So this year I’m making goals based on things that I want to accomplish and that feed my spirit or soul.

2016 Goals:

  1. Read 50 books
  2. Run a 5k before my breast surgery and (maybe) after my surgery (this goal is VERY dependent on when surgery is and what type of reconstruction I choose)
  3. Increase my range of motion and upper body strength
  4. Make Beef Wellington
  5. Make “The Silver Spoon” lasagna
  6. Get my Passport renewed

These goals are not in any particular order and I think I can check them all off in the next 12 months.

Here’s a glimpse at my thought process in choosing these.

  • Reading has been challenging, chemo, radiation, etc. etc. all make focusing on anything difficult.  I’ve been able to get through some of my more challenging books lately so a goal of about 1/week is both attainable and a decent increase from the past 2 years.
  • I have always been and felt strong, emotionally and physically, I’ve lost a LOT of my strength and fitness in the past 2 years.  I want to move my body in the right direction to regaining this part of my life.  Sure I’d love to lose weight that I’ve gained during treatment and be as strong as I was before cancer, but at the end of the day, I really just want to feel like I’m physically and emotionally strong and healthy.  That doesn’t happen at a specific body weight or ability to bench press the it, but it will occur as I continue to make healthy choices for my body and mind.
  • I adore cooking and baking!  Making Beef Wellington has been in the back of my mind for a few years, to it’s moving out of the back of my mind and onto our family plate… soon.  I’ve made the Silver Spoon’s lasagna using store bought noodles, this year I’m taking on the whole recipe start to finish.
  • Travel.  This will be a part of our life-after-cancer so I really need to renew my passport.  If I don’t reach this goal, please smack my forehead.

What are your resolutions or goals for 2016?

2015 Year in Review

Christmas#1

2015 has been an amazing year.

As a family one of the greatest joys we’ve had this year has been joining the Launch Team for Hartford City Church.  This is a new church plant of the Evangelical Covenant Church, East Coast Conference.  Our mission is to glorify Jesus Christ and bless the city of Hartford.  The vision of the church is to participate in and experience God’s Beautiful Restoration in Hartford, CT (and beyond), Isaiah 61:1-4 is our seed verse.

Esther is in 3rd grade and doing great!  She loves her friends and is kind and caring.  She and Naomi are on the same indoor soccer team this Winter. Her favorite part of this year was taking our various trips to Old Sturbridge Village, with family and friends.

Naomi is in 1st grade and is also doing fabulously!  She is more quiet than Esther but just as sweet and kind.  She loves playing soccer with her friends from school and town.  Her favorite part of 2015 was having a play date with her friend Cam.

Matt has seen a busy year for work but he continues to grow in his position at Aetna and has a great team to work with.  He began brewing his first beer in January and made a few more batches over the year.  Ever the connoisseur, he was pleased with some and decidedly unpleased with others.  May brought knee surgery to repair a ruptured patellar tendon (it had ripped off his knee cap).  Matt’s surgery and recovery have been smooth and better than expected.  2016 will hold a return to running and golf for Matt, as both were put on hold during recovery.

Carey began 2015 by finishing her radiation treatment in January.  Over the summer she finished her Herceptin infusions and celebrated one year of having no evidence of cancer (aka remission).  There have been some setbacks this Fall with reconstruction, caused by an infection that brought a week at Hartford Hospital and removal of the implant used to reconstruct the right side (cancer side).  This means that 2016 will be the year in which Carey finishes reconstruction.  In the midst of the Fall’s challenges Carey began serving with MOPS International (Mothers of Preschoolers) as a Ministry Coach, working to support and assist the MOPS groups across CT and into NY.  Carey experienced the support and friendships that come from MOPS groups and communities and is very excited to be beginning to give back to this organization.

We have certainly had our challenges this year, but we have seen God’s hand carrying us through each day and challenge.  As people seeking to follow Jesus we know that Life will always have challenges, they are what shape us and build our character as well as our hope.

Our prayer for 2016 is that God would continue to draw us close to Him, that He would give us the strength and grace to meet each new challenge.  Our world can seem so dark at times, whether it is the individual challenges we face or the broader global challenges facing humanity.  We pray that 2016 would be a year that brings Hope, that as we celebrate the birth of Christ we would be reminded of the Hope that He came to give us.  As we go into the new year may we love and care for those around us with strength, humility, and grace, just as Christ did.

Merry Christmas and Happy New Year!

Love the Penneys

One Year

The past few weeks have been a procession of “One year” thoughts for me.  It was one year ago on February 17th that I first noticed a lump, closely followed by my appointment with my Dr, then mammogram and ultrasound, onto breast surgeon and wrapping up with my first biopsy.

Today, 3/4/15, marks one year since receiving the call with my diagnosis.  I will forever be grateful to Dr. Heather King, my breast surgeon, for preparing me to receive this call.  I remember precisely where I was, the chair by the windows in my living room, my friend Suzanne was over and we were sharing conversation and tea, or maybe coffee.  I remember the immediate feeling of peace that I had, I didn’t feel some huge sense of loss or fear, but more a feeling of surety.  Surety that while this would be a difficult fight it would be a fight that ends in life and hope.  I’m sure that I was also in shock, our brains are amazing in their ability to portion out stress in the midst of a crisis.  Even one year on I’m not sure that I’ve ever felt the entire gravity of breast cancer at one time.  And for that I thank God!

One year on, I’m facing fatigue from ongoing treatment and some of the side effects that go with that, both physical and emotional.  I’m facing frustrations that I’ve gained as much weight as I did in my pregnancies, but I will not be delivering a tiny human to jump start weight loss.  I’m facing that big huge unknown commonly referred to as “The New Normal”, whatever that means.  I am certainly shell shocked, following months of intense treatment, decisions, Doctor appointments, physical therapy, etc.  Things seem eerily quiet now, I’ve gone from more than five appointments a week to maybe 2-3.  I’m facing the uncertainty of “could the cancer come back?”.

One year on, I’m also facing Life.  Perspective.  Joy.  Freedom.  New friends.  Hope.  And this is where I choose to dwell.  To think of all the amazing women and men that I have met and been inspired by, fellow patients, nurses, technicians, doctors, staff, volunteers, everyone that participates in even the little areas of supporting and treating cancer patients.  I feel stronger, not because I did some amazing thing; I didn’t do anything spectacular, I simply showed up to my appointments.  But I do feel stronger knowing that I made it through the year, my family made it through the year.  We’re war torn, for sure, but I’m alive, we’re alive.  We faced a death dealer and said “Not today”.  We are facing our unknown future together and with a strength that we did not have a year ago.

One year on, I have felt peace, hope, joy, love, comfort, care, strength from God in ways more tangible than I ever could have imagined.  That sense of surety that regardless of what would or can, still, happen, my fight always ends with LIFE.  The countless people that sent cards, seriously SO many amazing cards.  The delicious meals.  The random cake balls and treats.  The prayer shawls and blankets.  The house cleaning help.  The childcare and playdates.  And the list goes on, these things often occurred at times when I or we needed encouragement and lifting.  Before we began treatment my father-in-law passed along a passage from the Bible that has been a constant source of encouragement, through chemo, surgery, radiation, and all the moments in between.
“When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.”
Isaiah 43:2

Thank you.  Thank you for the prayers, the cards, the gifts, the meals, the dusting, the childcare, the laughter, the joy, and most of all thank you for using your gifts to point us toward hope.  I could not have made it through this year alone.  We could not have made it through this year alone.  And we did not make it through this year alone, thanks for joining us for the ride.

The Plan

In the last month, we’ve been to a ridiculous number of appointments meeting with breast surgeons, breast oncologists, plastic surgeons, cardiologists, radiologists, and I can’t even count how many different various imaging techs.  All of these appointments have worked together to form The Plan.

The plan for my treatment is chemotherapy first, followed by surgery, and possibly radiation, then followed by an IV and oral drug for one and a few years respectively.

We mentioned in the Killer Boobs post that my particular type of cancer is Invasive Ductal Carcinoma, this is pretty common in younger women since it’s one of the more aggressive cancer cells (young women tend to have more aggressive cancers).  Where my cancer departs from the “young women norm” is that my cells have positive receptors for Estrogen, Progesterone, and the HER2 protein (for some more information on the HER2 protein here’s a video from D-F).  These are all things that power or feed the cancer cells, and they are all treatable with some newer, highly effective drug therapies.

So here’s a rundown my chemo plan:

I will have 6 cycles of chemo, each cycle will be 3 weeks apart.  The total chemo treatment (barring any health delays) will run about 18 weeks, since I began chemo on Mon 4/7 it will likely go into mid-July.

The cocktail:

Herceptin (Trastuzumab) – this drug targets the HER2 protein, it’s a fairly new drug that is very effective at stopping/slowing the growth of the HER2 protein.  A big plus of this drug is that it carries few side effects and is generally well tolerated, this is great since I will continue to receive this drug every three weeks for one year.

Perjeta (Pertuzumab) – this drug also targets the HER2 protein and is generally used with the above Herceptin as well as another drug that I am receiving.  I will receive this for the 6 cycles.

Taxotere (Docetaxel) – This is a chemotherapy drug that works well with the above two to attack breast cancer.  It carries the ‘normal’ chemo side effects with it, nausea, fatigue, low blood counts, and so on.  But it has a proven record of working well on the type of cancer that I have.

Carboplatin – This is a fairly common chemo drug as it’s been around for a while and is used to treat a wide array of cancers.

After I’m done with the chemo listed above I will have surgery and then go onto some more drugs but we’ll get into that in another post.

Love, Hope, and Laughter!!

Dana-Farber

On 3/26 (Weds) we visited the Dana-Farber Cancer Institute in the Yawkey Center for Cancer Care.  We went not because we were worried about the quality of care that I have been receiving in Hartford, but because we live about 1.5 hrs away from one of the top cancer research centers in the world.  This is especially true for research and treatment of breast cancer in younger women.  Dana-Farber has an entire program dedicated to breast cancer in this specific demographic, providing treatment, support for some of the unique challenges facing younger women, genetic counseling, and research.  Being this close to this level of facility really meant we should take the opportunity to go and see if they would have a different treatment plan or even some trials that I would benefit from joining.

Simply put Dana-Farber is amazing!  The facility is beautiful.  The location is Boston, and we LOVE Boston.  The Doctors are some of the best in the field.  The people are so very kind, from parking attendants to reception, to nurses, to assistants, and everyone in-between.

We arrived rather early for the appointment so we were able to scope out the facility a bit, the cafeteria was nice, the gift shops were great, the Friends Place shop sells hats, wigs, and all sorts of things that help to manage some of the affects of chemo (I picked up a couple of hats).  The main lobby has live music throughout the day, all in all they work very hard to make it a place that fosters healing and streamlines the process of treatment.

While we were there we had an appointment with a breast oncologist (Dr Morganstern) and breast surgeon (Dr Dominici).  We really liked both as they took a good amount of time to answer our questions and present us with several options for treatment, including the pluses and minuses of each.  What we learned is that there’s really four different protocols for breast cancer treatment.  Two protocols have surgery first and two have chemo first, but the key point is that the results of all four as basically the same.  Because of the early staging of my diagnosis the treatments are highly successful with low numbers of recurrence.  There is a randomized trial running at DF that I would qualify for, but Dr Morganstern did point out that because the protocols are so successful there may be little to no difference between the medicines.  We received some good information and feedback about the treatment plan that our Oncologist in Hartford is proposing.

Even though Dana Farber is an amazing center and the care would be superb we are seeking treatment in Hartford, knowing that we can go to DF if things change or we stop receiving the same level of care.  The shorter distance was a large part of this decision, that and feeling a strong connection to each of the Doctors we have met with in Hartford.

Up next is the post about our treatment plan!

Love, Hope and Laughter!!

Killer boobs…

I’m going to jump right into this because that’s really the only way I know how to do things.

On February 16th I found a lump in my right breast, nothing huge but it was noticeable. About one week later I had an appointment for a diagnostic mammogram and ultrasound.  During that week I figured this was nothing to worry about, lots of women have little lumps and bumps that turn out to be of no concern.  While I was at the appointment things went along normally, I was told that depending on what the radiologist saw I might just talk to a nurse about the findings.  I knew things took a different turn when the ultrasound tech said that the radiologist would talk with me about what they were seeing; the turn became even bigger when I was brought to the really nice waiting room; I knew that we had changed roads when the radiologist came into the room with a “Nurse Care Coordinator”.  “Crap” was my thought when she introduced herself.  We spoke about my need to have a biopsy to determine the exact nature of the lump.

From there time sped up and stood still.  We met with a surgeon and had a biopsy later in the week.  Our surgeon gave us a good picture of the different options we would have depending on the biopsy results.  I think this made a big difference for us when we received the call on Tuesday telling us that the biopsy showed that the mass is cancerous.  I felt somewhat prepared by already knowing some of the options I have and some of the next steps in the process.

Yesterday (Fri 3/7) we met with the surgeon again to discuss specifics.  The cancer that I have is invasive ductal carcinoma; it is a MSBR grade 3 (this is different from the stage) which means it is an aggressive form of cancer.  It tested positive for estrogen and progesterone receptors, we are waiting to see if it is also positive for another receptor, receptors can impact treatment and provide me with more options for care.  My lymph nodes appear clear and the tumor is 2.4cm so I have stage 2 cancer.  This is considered highly treatable and curable.

The next steps involve screening for the BRCA gene, I had the blood drawn yesterday so that is in process and will take a few weeks.  I will also have an MRI to get a better picture of the tumor and lymph nodes to confirm size and status a bit more clearly.  We will be meeting with an oncologist and plastic surgeon in the next 2 weeks, as well as a geneticist to discuss the BRCA results.  As of now I will be having surgery in the next month or so, depending on how quickly we can schedule appointments and follow-ups.

I feel pretty much the same as I always have so I have good energy levels and I’m not sick at all… well aside from the cancer. 😉  I feel very comfortable with the surgeon that I have, she is young and understands my perspective and is very competent.  I’m scared to be facing cancer at 36 and I’m definitely nervous about surgery and treatment, especially since I am fairly squeamish; as in I fainted before the biopsy, but that’s a story for another post; and there will be incisions, drains, spacers, and all sorts of other “squeam” inducing things. (UGH) I’m pretty sure that we have a bit of shock going on and I think things will sink in as we get closer to surgery.  I will keep living and having fun with life, for example I fully intend to have a wicked fun haircut before surgery and beginning chemo.  I am comforted by the care, prayers, and support that we are already receiving from family and friends.  Finally and most importantly I have a peace from God that he is carrying us through this, that this will be a chapter of my/our story that will have a positive impact on my/our life and for those around us.  The passage Romans 5:1-5 keeps coming to mind, here’s verses 2-5 from The Message “There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

When 2014 began I sort of ‘claimed’ Oceans by Hillsong UNITED as my hope for the year, it’s pretty much perfect for where I am now.  Here’s the song in case you aren’t familiar with it: http://www.youtube.com/watch?v=1m_sWJQm2fs

Please pray for wisdom for the Doctors involved and for us as we face decisions regarding treatment and care.

Love, hope, and laughter to you all!!