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!!

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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!!

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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.

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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!

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An update and some FANTASTIC news

I had my ‘are-you-alive’ appointment with my oncologist yesterday and I am alive. My counts are good, so that means that my white blood cells and red blood cells are hanging in there and not dropping to scary low levels.  I received 1 liter of fluids and will receive another liter tomorrow (Weds).

I posted an update and asked for prayer for a few areas, over the weekend the mouth sores were really awful, and the migraines continued.  Sunday was a particularly hard day, I couldn’t keep food down and almost everything made me nauseous.  However, in the evening we saw things turning for the mouth sores and I woke up Monday with a significantly healed mouth!  The healing continued through the day yesterday and this morning things are much improved, not quite 100% but very close.  I still have some headache pain but we are working to get that better managed and I’m confident that the next cycle will have fewer migraines.  In short I’ve experienced pretty much all of the side effects they say might happen, except hair loss I have my hair still ;).  So this is prompting my oncologist to change my dosing next cycle.  For the first cycle I received a ‘loading’ or double dose of herceptin and perjeta and a regular dose of taxotere and carboplatin.  For the 2nd cycle I will receive a normal dose of herceptin and perjeta and a 15% reduced dose of taxotere and carboplatin.  This should help to make the chemo more tolerable for my body, but still not tolerable for the cancer cells.

Did I say something earlier about FANTASTIC news??  Why yes, I did.  And since I believe in not overusing CAPS the news we have it truly fantastic!!!  It’s two fold so the older news first.
We received the results back from the biopsy that I had on 4/4.  To recap they tested three spots, it was supposed to be two but they could get the third with the same incision.  One spot was on my left breast (my right breast has the cancer) and that came back CLEAN, no cancer. YAY!!  The other two spots were on my right breast, one in the 9/10 o’clock position and one was the axilary tail lymph node (which means its a lymph node thats really low or further away from my arm pit).  So the mass at the 9/10 position came back positive for cancer.  It is the same type as the original spot, but this doesn’t change my staging or treatment plan, it just means the chemo has a few more cells to kill off.  But the lymph node came back CLEAN!!!  This is fantastic news, it means for surgery they will do a sentinel node test (a few select nodes) to see if they are affected, if they are not then it could mean that I will not have to go through radiation.
And we have more good news, I can hardly stand it.  I’ve been feeling the initial lump for the last week and I keep telling Matt “It’s getting smaller.  It’s getting smaller.”.  When we saw the Doctor yesterday she confirmed that the mass is indeed getting smaller, so the chemo may be taking out the mucus membranes on my mouth but it’s also taking out the cancer cells.  They are dying!!!

This has been a hard week and we have 5 more cycles of treatment to go but it’s so encouraging to know that this is working, and to hear the words of encouragement from all those supporting and caring and praying for us.  I know that God heals, He healed my mouth and throat.  I know that God uses many ways and means to heal us in all areas of our lives.  And I know that He is carrying us as we walk through this process, for when we are weak He is strong and is our strength.  I want to thank each of you, for helping us to feel God’s arms in tangible ways.

Love, Hope, and Laughter!!

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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!!

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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!!

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