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

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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

Treatment Update – Radiation and other fun things

I realized that I never did an update with my final pathology from my surgery, it’s only been a couple months (LOL). I’ve been declared clinically NED (no evidence of disease) it is very rare for anyone to hear they are truly cancer free so we are SUPER happy with NED. This is so totally, blow through the roof PRAISE worthy!!

My surgery went very well, a total of 8 lymph nodes were taken, dissected, and then sent for further more intense dissection. A teeny tiny bit of cancer was found in one node. The evidence is strong that all of the cancer has left the building so to speak but I will be doing some follow-up meds (all part of the original plan). My breast surgeon (the fabulous Dr Heather King) did a great job and is very happy with the results. My plastic surgeon (the rather hilarious Dr Alex Cech) thinks I might be his best work, note the “rather hilarious” designation. But seriously all signs point to killer LOOKING (not acting) boobs in the future.

I’ll be continuing Herceptin for a few more months (1yr total) and I’ve begun taking Tamoxofin. Both are geared at lowering the risk of recurrence of my type of cancer (invasive ductal carcinoma; triple positive; email me or Google it if you want more deets).  I’m also participating in a trial that is comparing Herceptin to another chemo drug, Kadcyla.  This drug has been approved for treatment in later staged breast cancer patients and they are looking to see if it will benefit earlier staged patients as well.  I have been randomized to the herceptin arm of the study so there is no change in my treatment, just some more ‘work’ to do with blood draws and surveys.  I am glad to know that my case and experience will help to inform and improve treatment for future patients.

My surgeon presented my case to the Hartford Hospital tumor board in mid-September and the overwhelming response was that I should go through radiation.  As in, there were over 30 Doctors at the meeting, of differing specialties, and they all agreed that radiation was the best course for me to take.  We met with my Radiation Oncologist (Dr Bersch) and she said that the radiation will change my risk of recurrence from 12-25% to less than 10%.  Needless to say I’m not happy about needing radiation but I am happy to hear that at least it will benefit me in the long run.  I began radiation on Weds 12/10, I will have 28 doses, this will basically run every day (M-F) for about 6 weeks.  I do get a few days off around Christmas and New Year’s so I’m hoping that will help with how I tolerate the radiation.  The key side effects are fatigue and skin issues.  I have almost every kind of oil or lotion known to help with radiation so I am as ready as I can be.

I am on my way to a complete recovery. My oncologist (the AWESOME Dr. Patricia Defusco) is thrilled with what she sees and how I’ve responded to treatment. Thank you all for the prayers, love, and support; I mean, really, not a day goes by that I’m not overwhelmed by the care we are receiving. Matt and I would not be able to do this without this huge host of people that are lifting us up!

Chemotherapy Cycle 5 & 6 (recap)

I went into this cycle following a great time camping with the other families from our Life Group and the day after having a blast at a friend’s wedding.  I was not particularly excited to go into chemo but knowing that I only had 2 treatments left made it much easier, kind of like “It’s all downhill from here”.

At this treatment my oncologist decided that I would be receiving the full dose, remember following my first treatment they had placed my dose at 85%.  Side note: chemotherapy dosing is based on weight and height (I think one of my drugs also takes age into consideration); some people need a higher then ‘standard’ dose, some people need a lower dose; the oncologist will determine what the patient should be receiving.  So I received 100% dose for Cycle 1; I experienced pretty much every side effect that one can have, it was a very rough cycle; Cycles 2-4 were dosed at 85%; I had a lot of side effects but between the lower dose and learning how to manage my meds I was able to navigate the Cycles with the effects fairly well managed.  Needless to say when I was told that they were going to be returning my dose to 100% I was nervous, actually I was pretty scared.  But, as everyone (nurses and Docs) reminded me “we’re going for cure, so let’s throw everything at it” that got me on board with the dosage change.

Overall, the cycle wasn’t bad.  My anti-nausea med schedule was changed and that helped a bit with the increased nausea, I also began taking an oral anti-viral to try to decrease the mouth sores, while I still had pretty nasty sores it helped make the duration of them a bit shorter (Yay!).  What was challenging is that this cycle really showed the cumulative affect of the chemo.  The nausea was more intense and lasted quite a bit longer; my fatigue was much more and again lasted longer; I’m began to see changes in my nails; and my eyes have gotten a bit more watery (kinda like our eyes water on windy days).  As I said my meds really helped to manage most of these affects, though there’s not much that can be done about my nails and the watery eyes.  The previous cycles left me feeling decent and improving quickly after 7-9 days, this cycle was more like 10-14 days.  I was laughing with another chemo buddy (this woman and I are on similar cocktails and the same treatment schedule) that we come into treatment happy, laughing, and feeling good, somehow “forgetting” that we’ll feel like crap in a day or two.  How resilient are our minds?

Cycle 6 was much the same as 5 with more intense and longer side effects.  I was nervous knowing that surgery was approaching and I wanted to be as healthy as possible.  I’ve added probiotics and drank more water than I thought humanly possible (in addition to receiving hydration early in the cycle).  Thankfully the anti-nausea meds seemed to work their best and I was able to eat something during the entire cycle, it is very difficult to eat with mouth sores but I managed with some soups and eggs.  All of this seemed to work well so that three weeks after my last chemo treatment I was able to have my surgery.

The worst of the chemo is DONE!!  Thanks for following along with my treatments.  I’ll be on Herceptin, a chemo drug that carries few side effects, for another 8 months and I’ll begin Tamoxifen shortly.  Both these drugs are geared at reducing my risk of recurrence, they carry fewer side effects than ‘standard’ chemo so I can begin the long road of regaining my strength and health.

For the Post-op Curious

I haven’t posted too many pictures here on the blog, mainly because of lack of energy and/or time. I know heading into my surgery I was curious about what this was going to be like. I knew I would have drains and these things that would slowly release pain med over a few days. I had no idea what that would be or look like.

It hasn’t been as bad as I expected.  I have more range of motion that I anticipated having, that’s not to say I’m anywhere near normal but I could wash my hair if I needed to but showers are a no-go for now, I’m hoping my plastic surgeon will clear me for careful showers today.  There’s quite a bit of pain, especially if I haven’t moved much, getting in and out of bed is tricky though it is made easier by our bed being very high off the floor.  The stairs in our home haven’t been awful, but the meds I’m on mean I need to “proceed with caution”  Matt generally tries to chaperone me.

Now for the appearance side of things.  My plastic surgeon was almost like a child on Christmas, he was very pleased with how the incisions look and how my “breasts” appear.  I’ve seen the incisions and I didn’t pass out which is noteworthy given my experience with my first informed consent of this entire process.  I have some pictures below (NOT of the incisions) that show my super haute fashion surgical bra, the drains (we call them blood grenades), and the OnQ pain pump.  I’m sharing these because I was curious and that’s normal and healthy.  Breast cancer is a big deal and it affects thousands of women, many of whom we know personally.  Any women that has a mastectomy (single or double) will have a similar set-up to me.  This is about information and sharing what this experience has been and is like for me.  My hope is that this is a help to someone, just as sharing this is a way for me to process through all these changes.

NOTE: if you are sqeamish and don’t do well with medical stuff or blood, feel free to skip the pics. 🙂

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So this is it! Part of what my surgeon was so excited about is that I am not 100% flat. When he inserted the tissue expanders he was able to begin the expansion process (at least thats how I understand it). Those bulb-y things are the drains. The tiny tubes lead to the OnQ pump which is in the black bag/fanny pack thing. The surgical “bra” kind of redefines compression wear. I mean I love compression leggings for working out but this is to tight that I have breathing exercises to do each hour.

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Initially when I came home from the hospital the OnQ pump (black bag/fanny pack-type thing) was pinned to one of the drains. Wearing it like a fanny pack is much more comfortable.

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I have two drains (one on each side) they connect into my side and are pretty basic, they help drain excess fluid which helps to prevent infection and speed healing. Matt empties them 3x a day and records how much fluid is in each “grenade”. I mean really don’t they look like little blood grenades? But don’t worry most of the fluid in the drain is not blood, it’s a mix of water and other fluids with a bit of blood. These drains will probably come out in a week or so.

So that’s it.  I hope this has been or will be a help and encouragement to someone.

Love, Hope, and Laughter!!

Chemotherapy Cycle 4

This cycle may have been my easiest cycle.  That is not to say that I didn’t have the side effects but they were better managed and passed by fairly quickly.  About 7 days of nausea; mouth sores come around day 4 and clear up around day 7.  Metallic taste lasts a little over 10 days and by the end of the second week I was feeling a bit more normal.  As I mentioned in an earlier post the fatigue lasts for the entire 3 weeks but it’s manageable and I can live life more easily in the last week or so of the cycle.

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!