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.

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!!

The Surgery

Bilateral mastectomy with sentinel lymph node dissection and possible axiliary tail dissection with reconstruction.

That is the name of the surgery I will be having tomorrow morning (8/11) at 11:15.  In non-medical terms it means I will be having both breasts removed, during surgery the Doctors will remove and biopsy the primary lymph nodes, there’s a possibility of removing more lymph nodes but that will be determined during surgery.  The plastic surgeon will also begin reconstruction, this process will take a few months to be finish.

I am as ready as I can be for this surgery.  This is what I had decided to do in March and I haven’t really had any doubts about whether this was the best option for me, it is.  Removing the breast that has the cancer is kind of a no brainer for me, since I have two confirmed tumors and a possible third (which was not biopsied because I planned to do a mastectomy) even if a Doctor would recommend a lumpectomy there would be very little breast tissue left.  Most Doctors that I have spoken with recommend a mastectomy because of the multiple locations and that the locations are in different quadrants of the breast (they view the breast as a pie divided into quarters, the tumors are in different quarters).  Removing the unaffected breast isn’t really necessary from a medical standpoint, the statistics say it is very unlikely that the cancer would move to the other breast in the case of recurrence.  So while I am only changing my chance of recurrence by 1-2% I still feel that 1-2% and some peace of mind is worth the extra recovery time.  And to be honest I like symmetry and let’s face it a single mastectomy with reconstruction would not be symmetrical.

This is clearly a deeply personal and difficult decision.  Breasts are a source of cultural controversy and over-sexualization in our world today, whether it’s talk of public breast-feeding or the exploitation of women it’s easy to forget that at the end of the day this appendage can nourish my children and attempt to kill me. ;)  All joking aside, this is not a completely simple choice, though in some ways it was for me, I have spent many hours working through this choice.  For the many women that face breast cancer each day this choice looks different and there is no “right” decision, there’s also no “right” way to come to a decision.

So as we stare down the final hours before surgery I have complete peace in my choice, in my Doctors (seriously, they are great!), and in this time.  I know that recovery will take time and effort and will bring pain, but nothing in life is easy and the plan is for this to bring me many more years of life so it’s worth the work.  If you pray, please join with us tomorrow and know that the support, care and love we have felt is simply overwhelming.  Thank you all for loving us.

This verse was shared with me and it has carried me through much of this time:
Isaiah 43:2
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.

 

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!