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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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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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!!

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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!!

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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!

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A funny thing happened on the way to the biopsy

Here is the promised post about my biopsy fainting spell.

I had my biopsy on Friday 2/28.  It was an ultrasound guided biopsy, I knew the basics of what was going to happen.  An incision is made, probe goes in sucks out some tissue to test, and a marker is left behind to let any future radiologists know that the lump, mass, whatever was checked.  Then they use ice and pressure to stop bleeding.  All of this is done with a nice dose of local anesthesia so there is no pain.

I’ve had two kids so this should be no problem, right?

That would have been true if I had not had to go through the “informed consent” or if Matt had been with me for the informed consent.  When they took me in Matt was left in the waiting room with the assurance that they would “take great care of me”, I wasn’t worried because I knew what to expect.  We went through the changing of the clothes, an ultrasound to make sure everything was still in the same place, and then it’s time to get this show on the road.  I meet the Doctor that will be performing the biopsy, she is very nice, reassuring, and calming.

I’m going to pause here to mention that I am somewhat squeamish, not so much when procedures are happening to me but when I hear people talking about procedures.  There are a couple of others in my family, that will remain nameless, that also have a squeam weakness.  This was more of an issue when I was younger, as an adult I haven’t really had any problems, so to speak.  I’ve had two kids, two lipomas (little fatty polypy things) removed; I’ve bandaged my kids cuts and scrapes, and bandaged my own cuts.  I did not think that I would have a problem with this procedure.

So the Doctor began talking to me about how I was, what the procedure is, how long it will take, and so on.  Then she began talking about the very specific details of the procedure, let’s call them graphic details of the procedure.  I was doing fairly well through the first two thirds but as she began talking about the final steps of the procedure I felt the need for a little more air, and things began to get fuzzy.  I’m told that I was nodding away, as if in agreement or understanding, as I began to faint.  The next thing I know I’m laying flat on my back (on the bed that I had been sitting on) with my knees bent.  This was not a “Oh I feel dizzy let me get my head back” kind of fainting.  This was a “What the heck just happened?  Did I just hear music?” kind of fainting.  I actually think I did hear music, not the “go into the light” angel music that we hear about in movies but just a chord or two of more “regular” music.

At that point the Doctor was not as calm, she kept asking if I was sure I didn’t want to do the procedure at another time with some sedation, etc.  I, of course, insisted that ‘no this will be fine.  I want to get it over with.  Please don’t go into any more detail about the procedure.’ and ‘can I see my husband?’.

Matt came back and after a moment of panic realized that I was OK.  He was able to stick around through the rest of the informed consent (which was finished with fewer details) and then left for the actual procedure.  The ultrasound tech, Doctor, and nurse (that joined us after I fainted) were all great and the rest of the biopsy went with no problem.  The Doctor was concerned enough to give me her cell phone number and ask that I call or text her the next day to let her know that I was feeling alright.

So the moral of this experience is that Matt will be in the room when informed consent is given so that I can tune out if needed.  If anyone knows of a way to desensitize oneself to this squeamish passing out thing please let me know!!  I’m guessing the surgeries and treatment that lie ahead will probably help.

I hope you were able to laugh with us!

Love, hope, and laughter to you all!

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