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.

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 Long Overdue Update (Chemo Cycle 2 & 3)

Hi all!
I am very overdue in posting an update on how things are going, I’ll try to be as concise as possible.  I’ve had 3 cycles of chemo, we began on 4/7, had our second treatment on 4/28, and today (5/19) is the third.

You may remember from a post following my first treatment that I was dealing with a LOT of side effects.  I describe it this way, “My body saw the two page list of side effects and decided to make the most out of the chemo experience and pretty much get all the side effects.  Except losing my nails, I still have my finger and toe nails.”  My body’s response led my oncologist to reduce my dose of Carboplatin and Taxotere by 15% for my second cycle, chemo has a standard dose that is determined by weight.  Different people process the chemo differently so some need a smaller dose, some need the standard amount, and some need a greater dose.

The dose reduction made a huge difference!  I still had many of the same side effects but they were less serious and passed by more quickly.  The two symptoms that seem to be compounding are the nausea and the fatigue.  This is not uncommon since the drugs do build up a bit in my system, and both symptoms are manageable.  The nausea seems to last around 7 days; the fatigue lasts almost the entire 3 weeks but I’m still able to get out and, especially by the last week, it is easy to manage.

So we showed up in the AM for my treatment.  First we meet with my oncologist so that she can evaluate how I am doing and make any changes that need to happen.  I have my port accessed so they can draw blood for testing (to see how my red and white blood cell, and platelet counts are) this preps my port to receive the medicines that I’ll be receiving.  Everything looked great so we went ahead with treatment and a mere 6 hours later I was finished.  It can be a long day but we are meeting some nice fellow patients and all the nurses are fantastic!

I am feeling very hopeful that the treatments will continue to be manageable albeit with some side effects, it is chemo after all.  It’s also hard not to be hopeful when I just finished my halfway-chemo dose and the tumor has shrunk noticeably!  This is good news!!

Please hold us in your thoughts and prayers over the next week as I face the worst of the side effects and Matt picks up the slack and juggles Carey and kid care with work and house needs.

Love, Hope, and Laughter!

Chemotherapy

I’m a few days into my chemo treatment and, in my opinion, things are going well. I’m not feeling real great but, I could be feeling far worse.  I began blogging about this experience in part for a way of processing through things, in part so we could easily keep people up to date on how we are and what is happening, and in part because I believe in living authentically with a transparency that allows others into my life.  This isn’t something that comes easily, that whole being vulnerable thing is scary and risky but I’ve come to believe that it’s the best way to live.  So, I’m writing this post because chemo is crappy and I’m feeling really crappy and I know that we have so many friends, family, and strangers praying for us that I want to ask for prayer because there is power in prayer.

Chemotherapy is a pretty amazing medical development, it’s a set of drugs that targets the fast growing cancer cells in the body and it kills them (YAY!!!).  The downside comes with the fact that cancer cells are not the only fast growing cells, mucus membranes, our GI track, hair, skin all have fast growing cells.  So chemo patients often will experience hair loss, skin issues, mouth and throat sores, GI issues, etc.  I’m in the midst of experiencing several of these issues and though these are going on I need to note that overall I feel alright, I have some energy and I don’t feel like zombie (yay!).  That said I’ve been having some pretty severe headaches (migraines) these have not been particularly responsive to the meds that I’ve been taking thus far.  I have the mouth sores, these are annoying and so completely weird to me, they aren’t really painful but they are uncomfortable and totally impact my sense of taste (big sad face), I’m also realizing I need to be careful what I eat to avoid making them worse; there’s something going on with my GI track as my throat feels tighter (I can feel my swallowing more than normal) and my stomach is more easily upset, note on the throat, it’s not closing just tight.   Along with that is some general body pain, it seems to be kind of set up like an alarm clock and if I’m up past 9:30pm the pain kicks in, so I’ll be going to bed earlier.  Lastly, in a stroke of awesomeness the nausea has not been too bad, the exception being when I decide that I don’t need my anti-nausea meds, rookie mistake that I won’t make again.  We have an appointment with my oncologist on Monday, she calls it her “are-you-alive” appointment, and will be asking about all of the above things, there are some treatments that can help and some may just be part of chemo, either way I feel certain the chemo will kill the cancer and not me. 🙂

I am not sharing this because I want sympathy or a pity party, I don’t, I still hold to the thought that I’m tolerating the meds fairly well and that things could be a LOT worse.  I share this info because I know many of you are carrying us in prayer and these are specific ways you can pray for us, specific needs that we have right now.  For those that don’t pray you can hold us in your thoughts and wishes.  My Father-in-law shared a passage of the Old Testament with me that I’ve been holding to as I’m walking this, it’s from Isaiah 43
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
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.”

Thank you for walking with us, for caring for us, and for supporting us!!  We have a ways to go but we’re down one treatment and almost a week closer to being done, and in the scheme of life, this is a very short period of time.  We have TONS to be grateful for and plenty to laugh about, and we are overwhelmed with HOPE.

Love, Hope, and Laughter to you all!!

A quick update on my MRI and other scans

Happy April Fools Day!!!  I was sure that yesterday must have been April first since we woke up to SNOW, but nope it’s today.  I hope you have a fun day and enjoy our latest update.

I had an MRI on Thursday, 3/13, considering how fast things have been changing basically means it was a decade ago.  They saw some stuff that looked crummy and might indicate more cancer.  Following that my surgeon ordered an ultrasound to see what would be easily reached for biopsy (if needed) or to see if maybe there were some things that looked suspicious but were nothing of concern.

During the ultrasound we were able to see that one “axillary tail” lymph node (one of the nodes furthest away from my arm pit) seems to be affected, I will have a biopsy this Friday (4/4).  There is also a spot on the left (other) breast that we’ll biopsy Friday.  The oncologist and breast surgeon aren’t very concerned about the  left breast since it’s not likely that the cancer would move there, it would be more likely to move to the organs (lungs, liver, etc.).  Even so, we do need to biopsy the spot on the left breast because if it is cancerous then the plan for surgery will change (they would need to test the left lymph nodes as well as right nodes).

On Tuesday, 2/25, I had a CT scan (abdomen, chest, and pelvis) and Bone scan.  Both scans came back normal with nothing noteworthy or concerning.  There are a few spots but our oncologist from Hartford said since an oncologist ordered the scans then EVERY little spot would be tagged or noted.  The oncologist from Dana Farber noted I have freckles on the outside of my body so I probably have some on the inside too.  I thought that was an interesting way of looking at it, though it’s not necessarily something that’s been researched.  Most of us do have little spots on our organs that are simply spots.

So I’m encouraged that most of the potential pieces seen on the MRI are likely to be either nothing at all (the tissue just reflected in a weird way) or nothing to be concerned about.  Check back soon for the update on our trip to Dana Farber (Amazing!!) and our treatment plan.

Love, hope, and laughter to you all!!

Lots of Doctors and an MRI

Hi all,

The last couple weeks have been mind-numbingly busy with doctor appointments, phone calls to schedule said appointments, and calls to get records faxed, copied, etc.  Last week there were 4 cancer related appointments, this week saw 3, and, as of now, next week has 3.  From all these appointments we have decided that 1) we really, REALLY like the team of doctors we have and 2) the iPhone app “Calengoo” is a life saver for us since it will sync both of our Google calendars (without it we would be both double booked and lost).

Another piece that made the past week difficult was that the results from the MRI were not what we had expected or wanted.  We were really focused on the mass being small and the rest of my breast being clear or unaffected by cancer.  The oncologist went over the MRI results and explained that there were a few other areas that were cause for concern, five to be exact.  Four of the areas were in the same breast that has the cancer, three small masses and one axillary lymph node.  The other concern was about a possible mass on the opposite breast.  This news was harder for me to hear than the initial cancer diagnosis because this news, if true, can affect treatment and possibly the stage of cancer (though not greatly).  I had been prepared for the possibility of some lymph nodes being affected but to hear that there were more possible tumors, especially after what seemed to be a clear mammogram a few weeks prior, was stunning to say the least.  Despite this news, the oncologist was very encouraging and positive about the treatment plan, citing past patients that had similar diagnoses and are many years post treatment with no recurrence.  Her assurance and demeanor helped us to breathe a bit, as did meeting with our surgeon again this week.  Our surgeon noted that there are many reasons that tissue can fluoresce and look different under the MRI.  Both doctors encouraged us to breathe and remain confident that my prognosis is STILL great.  I should note that neither is the type to give false hope or candy coat facts.  🙂

We’ve had some more news since then and some of it was very positive, I’ll write another post shortly with that information and our next steps.  I’m working to make these shorter and more frequent, time will tell if I can meet that goal.

Love, hope, and laughter to you all!