Testing, Testing

Yesterday and today were all about testing and getting most of the preliminaries wrapped up before the chemo.  I had to start off with getting an IV, which is a bigger-than-it-should-be deal (discussed earlier in blog).  Again, my blood pressure dropped, teeth started chattering, and they had to throw warm blankets on me, but it seems to be getting better each time.  There was no hyperventilating, though, and I was able to breathe through it and get back to normal so I could stand up and walk away.  

Next was Nurse Education while simultaneously I had to drink a big bottle of Contrast Fluid for the CT scan later.  The bottle was labeled "Berry Smoothie" but it was so far from that it was almost laughable.  The nurse sat down with Chris and me for an hour and half and just talked us through each drug that is part of the chemotherapy mix that has been prescribed, and what to expect with each drug.  It sounds like each of us is different, of course, and so there is no way to absolutely say what will happen, but he talked in generalizations along with best case, worst case.  It's nice that they don't want us to have surprises along the way.  I cannot remember exactly which drug does what - thank goodness I have a ream of papers that capture everything he said and more.  However, he talked about the nausea, and how every effort is made to "manage" it.  If my prescription nausea med doesn't work, I am supposed to let them know and there are others to try. He said I am not supposed to accept being debilitated by nausea, so that is good to know.

He talked about fatigue, and that is one thing that there is not much to help with, other than try to stay active but take breaks as your body dictates.  He talked about skin changes and how my taste will definitely change.  Food might taste overly salty or metallic.  I have readjusted my thinking about food for the time I am doing chemo.  The reality seems to be that I just need to get through it, and food will present many challenges, from various forms of stomach upset to sores in my mouth.  So, I will plan to do my best, but the nurse said there is no way to expect to eat salads and green smoothies through this process.  I now plan to eat foods that I like or love and what will comfort me, and I guess more importantly...foods that I can tolerate.  They equate it to morning sickness to some degree, and I remember eating mashed potatoes almost daily during the early days of Caroline.  

Of course he talked about hair loss.  That can begin as early as the 10th day after the first round of chemo.  He also talked about something I hadn't heard about at all, which was nail damage.  Apparently one of the drugs darkens the nail bed, then ridges become present in the nails, and then the nail can begin to separate from the nail bed.  He said it is very painful, and they try to prevent it by having the patient immerse the tips of the fingers in ice while that particular chemo is being run.  The ice is supposed to prevent circulation to that area of the finger and help with the nail problem.  He said some people do the ice and get damage anyway, and some people don't do the ice and don't have a problem.  I will do the ice and hope and pray for the best.  

Finally he talked about the port that will be placed on my upper left chest, near the collar bone.  He demonstrated exactly how it works, and talked about what to expect in the Infusion Room.  I can bring one friend, we can eat, drink (refrigerator provided), watch movies (with a headset), read, chat, etc.  There are a couple of pretty common things that can go wrong the first day...weird reactions, allergies...and so once again I am so thankful that Chris has made plans to be there with me, yet again.  Even Jonathan asked today if Daddy would lose his job since he is helping me so much.  I assured him that everything is ok with Daddy's job.  I used to work there, too, and they have been so very accommodating and it has been appreciated beyond measure.  After all of the talking he took us to the Infusion Room, and that is when I lost it.  I tried to be brave and hold it together.  There were at least 10-12 people in there....big leather La-Z-Boy looking lounge chairs.....2 full walls of windows with amazing views......cheery colors...smiling nurses....completely average/normal looking patients.  But what I saw most were all of those hanging bottles, everywhere.  And I knew that I would be sitting in there soon, and I would know those nurses' names, heck I might even know the names of some of those people.  The guide nurse kept talking, and I was nodding, and trying to smile through quivering lips, then clenched teeth, then I couldn't hold it in any longer.  Poor Chris.  At least he knew the best thing to do was say thank you and start ushering me back down the hall.  Of course the nurse had seen it all before, and he said that he wants patients to see the Infusion Room before their first treatment for that very reason...so it's not so shocking and overwhelming.  Mission accomplished.  I was definitely shocked and overwhelmed, so hopefully I can hold it together better next time.  At least there was no ugly crying, so that's a bonus.

Chris took the photos off of our phones before the trip, so I thought I would add a couple of pics.  This was actually before my MRI, I think, so it has been a couple of weeks.  I took it to show the kids Mommy's funny shower cap. 

This was the same day as above, and again, I took it to show the kids Mommy's funny slippers. 

I just love this.  The night before the lumpectomy, several of the girls from my small group came over to spend a little time with me.  They brought this wine to commemorate how we are going to CRUSH this cancer.  They also brought other yummy food, but most importantly they each took turns praying over me, very specific and special prayers that not only humbled me, but lifted me up.  Very special ladies. 

Another group of friends helped feed our family the weekend of the lumpectomy, and they sent along these beautiful roses.  I loved having them here in our room where I could see them all weekend.  So thoughtful!

Beautiful flowers from my wonderful sister in law!!  So excited to see her next week!

Gorgeous bouquet from The Ayco Co, where Chris still works and where I worked before.  I hate the reason for these flowers, but I remain so thankful for people taking the time to do things for us, big or small. 

I certainly am not picturing or mentioning every little thing that has been said or done or sent since this whole thing started!  Chris just happened to download these pics tonight, and there are several very meaningful things that have happened that I didn't think to take a picture of.  For example, even today, I received such a heartfelt card in the mailbox from a neighbor I have yet to meet, but her children attend the school where ours are about to start, and we have a mutual friend, and she just wanted to reach out and make herself available, along with promises of prayers.  Wow.  That is going out of your way to be kind.  I will remember that, and hope to be able to reach out to someone like that at some point.  OK...since I am mentioning things that have made me smile, let me also say that the very first cancer-related pick-me-up I received came from my friend Kati, herself a very, very recent breast cancer "thriver."  Her children made signs that remain hanging around my house, and also inspired my children to make nice signs for me, like "Stay Strong" "Best Mom" "Get Well Soon!" She also brought a medley of fun things, my favorite of which has been this handy heart shaped pillow that I have used every single night since I received it I think.  Finally, my sweet brother, who told me in the car when we were driving back to the beach after getting the original diagnosis that he planned to re-start his prayer journal, sent a beautiful journal for me to use.  It is already in my special place, and I am looking forward to having a dedicated place to journal private thoughts and prayers.  I love being able to look back on things like this and see answers that have come.

Finally I had the CT scan.  This wasn't like an MRI where the machine is loud and making a lot of sounds.  This one has a moving table that slide you through the imaging machine.  This was no big deal until they added the contrast to my IV.  The nurse said it would "feel a little warm."  Well, it felt like fire racing through my veins.  What a strange sensation.  I cannot really describe it, it happened so fast, but for the first time ever I really had a couple of seconds of realizing how the blood travels through the body because I could feel it move along, like one of those lights you try to trap in those arcade games.  Heat rushed through my scalp, face, then shoulders arms, chest, pelvis, legs, in that order, I think, but in 1.2 sec.  Then it lingered for a few minutes and I wouldn't call it pain, just uncomfortable, unpleasant, but still sort of neat. 

Here is the CT machine.  There I am in the hospital gown (with jeans) signing the umpteenth consent form. 

This is the Bone Scan machine from yesterday.  Amazing technology.  Again, no pain, no shots for this one.  The machine did have to squeeze in really close, but all I had to do was stay very still. 

Chris was photo happy.  Here I am, smiling because IV is out.  And I am covered with warm blankets.  What's not to love?

Stitches, Genetics and Second Opinion

I am celebrating good news today, and it is actually within the context of cancer.  It feels like there has been so much bad news, I was thrilled to get some *good* cancer news today.  First, the genetic panel came back at least a week earlier than anticipated.  I took the call as I was heading to Piedmont to get my stitches out.  I was so relieved to hear that the expanded panel we ordered, that tested for the 6 most common breast cancer genes, returned all negative results.  Hallelujah!!  This affects several things....first off Caroline, but also if you carry one or more of the genes, depending on which one it is, then your chances for recurrence are in some instances greatly enhanced, and/or your chance for a second new type of cancer are increased or greatly increased.  So thankful for this piece of news!

I really liked the PA who took my stitches out.  It was no big deal, and she even drained a good bit of fluid from under my arm where the nodes were removed.  That instantly took a lot of the pressure off the area under my arm, and I was able to actually hang my arm down by my side normally.  Dr. Barber made a point to stop in and check the incisions and ask about Yellowstone.  I really like him, too.  Tonight the incisions are draining a bit, which is new, but I am assuming it's because the stitches were removed today.  Overall, the pain is lessening each day and the range of motion of my arm is much improved.

Chris planned to meet me for lunch so we could get in one car and head to Emory.  Somehow I had missed the fact that there's an Uncle Julio's a mere stone's throw from Piedmont.  Of course we went there, and I abstained from ordering my favorite things topped off with a swirl.  Chris was running a bit behind so I needed to order for both.... I chose veggie quesadillas, which I am sure had a ton of butter and of course all of that cheese, but at least veggies, along with the grilled fish tacos with black beans.  We did our usual....eat half each.  It was delish.

Just getting to Emory was a big mess.  When I was going there before it was Emory Midtown, but this was Emory Winship Cancer, which is all the way downtown (I think....how do I still not know Atlanta any better than I do?!).  Traffic nightmare, but somehow we managed to get there on time.  We valet parked at the suggestion of the nurse, based on her description of the parking situation.  What a depressing place.  I mean, it's a cancer center, so what should I expect?  But man, talk about a sad bunch of people.  I was definitely not feeling any warm fuzzies at any point.  It has a whole different vibe going on than Piedmont...big time.  I was even given a buzzer like you get when waiting on a table at a restaurant.  I guess it is good that they have a system, but if their wait gets to be so much that they need a buzzer, that seems a little crazy.  But then, I noticed they take walk ups, so maybe that explains it.  Still weird.  And what the heck is a cancer walk up patient?  Anyway...I digress. 

I absolutely loved Dr. Zelnak, though.  She was clearly smart, articulate, personable and patient.  She went through our two basic treatment options, and explained it a little differently than Dr. Mininberg, so we learned again as we went.  While the two different chemo cocktails for Her 2+ are both accepted standards of care, she favored the same one that Dr. Mininberg did, so that felt good. It seems it is the more aggressive of the two options, with slightly better (3%) overall success rate than the other, but the side effects are worse and the potential risks are greater.  I don't watch Good Morning America, but I guess I have seen a couple of news articles that mentioned Robyn Roberts, who has apparently had a public battle with Her 2+ cancer, opted for this same course of treatment, but ended up with leukemia, one of the risks.  Apparently it's a 2% risk.  I think I am getting my numbers right.  The other big risk is weakening of the heart muscle.  Apparently most of the chemo drugs can weaken the heart, but usually it bounces back when the chemo stops. Apparently if this particular round of chemo (Adriamycin + Cytoxan) damages your heart, it might be irreversible.  Again...small chances, but they are still serious. 

Herceptin is the drug that specifically blocks the Her 2 protein, so it fights my type of cancer directly.  It cannot be given until the first 2 drugs above are finished, after the first 8 weeks.   She agreed that the standard is to start the Herceptin when I begin what I am calling "phase 2" which is the weekly chemo of Taxol.  The Herceptin needs to be taken for a full year.  What was new today was the mention of an even newer drug that targets Her 2, called Perjeta.  Just last Fall it was approved by the FDA to be administered to patients like me (Her 2 + with cancer in nodes) in the pre op setting.  Dr. Zelnak proposed trying to add that to my "cocktail" so that when I start "phase 2" in addition to Herceptin I could possibly add Perjeta.  Perjeta attacks a different part of the protein than Herceptin so if one didn't work, then the other might.  She gave all of this with the caveat that it is really expensive, and insurance might very well not approve it, especially since I already had surgery and it it has so far been only approved for PRE op.  However, I still need to go back for additional surgery, so she said there is a strong argument that I am both post op and pre op.  I like her thinking.  There are current clinical trials of Perjeta for the post op setting, but the results have not been released yet.  Regardless, it felt like this is an additional tool in the tool belt.  We plan to talk to Dr. Mininberg about it soon. 

Overall our take away was....loved her, loved her brain and info....it helped us a lot to pick her brain and have confirmation on where we are and where we are going....thankful for Piedmont (its location and its people).  The only other stat that she mentioned that really stood out to me was about the rate of recurrence in Her 2+ patients.  Again, this is a very aggressive cancer, but with these specific and relatively new drugs, about 85% of patients have NOT had a recurrence at the 5 year mark.  And that 85% includes patients with 1 positive node (like me) to patients with 10 positive nodes.  I am thankfully on the low side of this so in my mind that makes my personal stats even better than 85%.  Apparently, with Her 2+, if it is going to come back, it usually comes back within the first 2-3 years.   After that, the chance of recurrence drops way down, even lower than for the hormone positive cancers.  

I'll have to write more later about my plan for living "after chemo."  It will be difficult to put cancer behind me with the threat of recurrence hanging over my head, and with each day right now being so cancer focused.  I know I will find the balance, and I was inspired today by a podcast my friend Jennifer sent me this very morning.  It is late and I am tired so I will have to talk about that more later, and it will not be easy, but I really don't feel like I have much of a choice.  After chemo, it will be up to me to do everything in my power to prevent cancer coming back, and I need to start developing a game plan now.  More to come on this!  Tomorrow I think the scariest thing will be the shot of dye first thing, then of course, waiting on the results.  Oh...and buying a wig.  That is on the agenda tomorrow, too.

Isaiah 41:10
'Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.'

An Almost Regular Day

Yesterday and today felt sort of normal.  Yesterday we met friends at the pool and had a pretty relaxing day.  It was reassuring to catch up and see people in person.  The kids had a blast at the pool with a bunch of kids, some from back in the early MOMS Club days.  I needed help taking off my cover up, since I still can't get my right arm up over my head, but otherwise my arm has a nagging ache but no real pain unless bumped or pulled the wrong way.  Today we ended up needing to take it easy, though we did venture to Walmart for remaining school supplies and various other things.  Wow - I haven't been in Walmart with the kids in quite a while.  Luckily, I had an extra dose of patience and didn't get too annoyed at repeatedly saying no, you cannot have sugar-coated Lucky Charms, no, we are not going to buy that kind of yogurt, no, you really don't need a notebook with a giant pig on the front of it, etc.

I was trying to explain to Chris last night how now it feels like everything I see I view with a new lens, like it should be labeled as part poison.  I have read a bit of research in the past, and seen certain warning labels, but really just wrote most of it off as overkill.  Not now.  I am sure I am over-reacting in the opposite direction, but I am almost paralyzed with what to eat right now.  I am making green smoothies.  I am eating whole, real foods.  I am scared of meat.  I am avoiding sugar, I think (feels like it is everywhere).  We already ate pretty well I thought.....always whole grains, organic if I can find it.  Good eggs, No GMO chicken breasts, red meat is a very rare exception, lots of veggies.  But clearly, I need some kind of game plan.  I plan to visit the Piedmont Cancer Wellness Center and meet with either a dietician or a nutritionist....I am not even sure of the difference yet.  But I need to get comfortable with some boundaries, through research Chris and I do, and what I can learn through the Cancer Center.  Of course, now should maybe be the time I eat anything I want, since the chemo should theoretically kill everything.  But, I am not buying that.  I need protein for healing, and just an uber healthy diet to promote a healthy immune system.  I guess that's another thing to research.  Sigh.

Today we received a bunch of details about the events to kick off the school year (at our new school).  Things begin happening on the 8th, then a big All Campus Picnic with open houses on the 11th that we have been excited about all summer, then the 1st day on the 12th.  I am hoping beyond hope that I feel good enough to attend.  How weird to start at a new school under these circumstances....knowing there's a good chance I might need help with driving (though I am also hoping the fact that we live less than 5 minutes away will help me to participate more than if I had a true commute).  I am guessing I won't be able to sign up to volunteer for as much as I typically would, for fear that I would let someone down by being sick.  I feel robbed...of half our summer, and now of things beyond.  I am struggling to not be resentful of all the time this cancer has already taken, and this is only the beginning.  How many more hours of my life will I spend focused on cancer?   How many plans will I change because of cancer? 

I suppose I have to be gaining something.  A new perspective.  Yes, that is true.  A heightened sense of family and self, an increased reliance on friends, drawing closer to God.  So shameful.  I hate that THIS has caused me, yet again, to fall to my knees and pray more urgently, more often, more specifically.  I have had a very active prayer life for many, many years, mainly talking to God in those first waking moments, end of the night moments, in the shower and in the car.  Those are my times.  But now it is amplified.  I won't even get into all the different conversations, all the twists.  Basically, I am praying for strength (for the whole family), healing, for the right people to be placed in my path, for me to LISTEN and hear and follow the way the Lord wants me to go, for protection for my family, and to LIVE.  I want to see my children grow up and be brilliant, find happiness as an adult.  I want to travel to so many more places, I want to be with Chris when he retires because he deserves such a good life after all of these years of hard work for all of us.  I want to be a grandmother, spoiling sweet babies.

Let's see....I want to end on a happier note tonight.  I have received so many encouraging notes, texts and voice mails.  I am trying to get back to everyone, but I am sure I am not fully succeeding.  I cannot really describe how much it means to me to read and hear these notes, no matter how small.  Even if I can't talk right that minute, it is a much needed reminder that I am not doing this alone.  One friend suggested creating a special space, for meditating, resting, reading, praying.  I love that idea.  I am planning for that, with a comfy chair, blanket, and some good reads and paper at hand, for nights if I can't sleep (though I am sleeping great right now!) and for the time that I am dreading....all that alone time after the kids go back to school.  I actually really enjoy my alone time usually, and hopefully I can keep that attitude, but I also know that it is easy to slip into a very sad place when you aren't up to going out in public and don't have much choice about staying home, like when I had all the Shingles stuff going on.  Also, last night we received a very encouraging email from the friend/colleague of one of Chris' clients.  I won't say who he is except he is one of the top doctors in management at Wellpoint, which owns Empire Blue Cross (our insurer), and the client had offered to make the connection for Chris.  Anyway, given how busy this man must be, I was shocked to receive an email from him at 11:00 last night.  He had asked for the specifics about my diagnosis, for review.  He wrote a very lengthy email, full of detailed information about his thoughts on treatment, the current standard in protocol, and more.  It backed up our path so far, and also provided a second avenue for Her 2 + cancer that we can use as a talking point with Emory (we think those drugs are slightly less aggressive and would probably be used for older or less healthy patients, but not 100% sure).  Anyway - it was nice to have some confirmation and for someone to take the time to get involved.

So - no tears today!  Hurray!  Small victories....  :)

Filling Up the Calendar

I have felt a lot better today.  At least no new bad news came our way.  Thankful for that.   I had planned to volunteer to deliver Meals on Wheels with the kiddos this summer, but it took so long to process my paperwork that I didn't get the call that I was approved until we were at the beach.  In fact, the call came in within the same hour that Dr. Fisch called with the original cancer news, so I just went along with what the lady said.  Last night when I saw that I have Meals on Wheels training today, I wondered for a moment if I should really go, but then I thought, yes, I need to do that.  It's right in line with my plan for the day to stop obsessing non-stop about myself.

I am so glad that we did it.  It was such a great experience for the kids, and I am sad that they won't get to accompany me on most of the rounds since school starts back so quickly.  Regardless, today was eye opening for them, just as I had hoped.  Every person we met was so thankful for that hot meal, and we saw parts of Mableton I have never seen, and Jonathan especially had a million questions.  The two ladies who were "training" me got a kick out of our "helpers" for the day, and their presence was a true highlight for the mostly elderly folks we met.  Sure my arm was aching halfway through, and I was wishing I had brought my pain pills, but it was worth it.

After lunch my phone rang all afternoon.  I was so glad to hear that the Emory Cancer doctors have reviewed my reports and agree that the oncologist we want to see is the same one they believe is the right fit for us.  I have an appointment down there on Tuesday, so I am curious to find out whether she agrees with the drug regimen prescribed so far. 

I also have my CT scan, bone scan and electrocardiogram scheduled for next week. The first two are the tests to check for cancer in the rest of my body.  I will apparently spend almost all of Wednesday at the hospital, starting with a big dye injection at 8:30, followed by a 4 hour wait.  This is for the bone scan.  While I am waiting I will have a Nurse's Education course where I will tour the facility where all the chemo stuff happens and meet people and familiarize myself with the process.  The "best" part is that I can have nothing to eat or drink for 5 hours before the CT scan (other than a big bottle of contrast exactly two hours before), which will immediately follow the bone scan.  The next day I have the electrocardiogram to get a baseline on my heart, since one of the side effects of the prescribed chemo cocktail for me is a potential weakening of the heart muscle.  The phrase pick your poison comes to mind.

Finally, we scheduled the surgery to place a port in my chest to receive the chemo.  This part seems like a bit of a freak show to me, but I am trusting and can logically believe that it is the easiest way to receive all of the various chemo medications.  This will happen on the Wednesday after we return from Yellowstone.  At this point, I am scheduled to receive my first treatment that Thursday, August 7th.  I will go back the next day for a shot of nausea med that should cover me for an estimated three days.   They've already started sending prescriptions in for numbing cream (for the port), more break through nausea med, and steroids.

For some reason, even though I am really, really uncomfortable tonight with the lumpectomy pain (might have overdone it a tad), I feel considerably more peaceful than yesterday.  I read several encouraging things today, mostly sent by my friends.  Very encouraging stories of not just survival, but years in remission.  Somehow it also feels better to have things laid out on paper.  But mostly, it helped me today to see all of those people, each with their own set of troubles, both physical and otherwise, and to realize that they are still going, and fighting, and living, and going about their business in the best way that they can.  If they can, then so can I.  And somehow, my cancer felt a little less big when I saw some of their circumstances. 

And finally, I talked with Caroline tonight.  She seemed a little blue, and after I asked her to tell me about it, she described a feeling inside of her, that she couldn't make go away, but that it felt bad.  It hurt to hear that, but I think I get it.  I told her I think it must be that so much has happened, and it's all pretty scary (I've been mostly very brave in front of her but yesterday I couldn't seem to pull that off very well), but that we are going to get through it together.  She looked at me quietly for a minute, and finally whispered, "Are you sure?" I almost lost it then, because it sounded almost exactly like what I had asked the oncologist yesterday, as in, I am coming out of this alive, right?  Are you sure??  He sounded positive that this is treatable and curable, and I know what that meant to me.  I sounded just as confident when I told her very certainly that YES, I am sure.  I can do this.  WE can do this.  We are getting this map laid before us, and we are going to walk this path and get through it somehow, day by day.  She seemed relieved and I made a mental note to talk to her again tomorrow about the same thing.  If for no other reason, I plan to be strong for my babies, because sometimes just putting on a brave face makes you feel a tad bit braver.  It's like lipstick.  I feel a little more ready to face the day with lipstick.  Call me crazy.

Pathology Results with the Oncologist

Today has been my lowest since the first few days of this process.  I am still sore from the lumpectomy, but it's not too much worse than the biopsy pain.  My arm hurts more, and there is more bruising, but otherwise it is very similar.  Yesterday we began setting up appointments with a Piedmont oncologist, and with an Emory oncologist.  At first, neither could see us until after our Yellowstone trip, but then late yesterday afternoon we had a call back from Dr. Mininberg's office at Piedmont, and he agreed to see me today.

Luckily, my final pathology came back as we were in the waiting room, so we had that data to sift through together.  Basically, everything I heard during our appointment was pretty terrifying.  My mind has yet to really wrap around the whole, big picture.  I am clinging onto a couple of things:  (1) when I asked him for reassurance that this was still a treatable case, he said absolutely it is, without hesitation, it is curable, and (2) I know I don't have to do this alone.

So, for the results.....well first off, the 6 mm tumor turned out to be 9 mm.  That sounded like a big deal to me, but the doctor said that change doesn't affect the classification.  More concerning....the cancer that was found in my node turned out to be a separate 9 mm mass.  The second node remained clean.  They had no good explanation as to why the ultra sound or the MRI failed to show that mass, other than to say something needs to be about 1 cm to show up and also my nodes weren't swollen.  Finally, the goal was to remove the original tumor from my breast, and then take out a safe amount of healthy tissue surrounding it.  These are called margins and they want at minimum 5 mm of healthy tissue as a margin around the mass.  Again a disappointment - there were at least two sides where my margins were only 2 mm, then even more concerning was a new, tiny mass discovered that was DCIS (Ductal Carcinoma In Situ, meaning it is contained and a grade 0, but in a new location nonetheless that would over time want to become Invasive) and finally, the surgeon reported being concerned with finding a "skip", which means there was cancer, then next to it healthy tissue, then cancer again (trace amounts, but regardless, this shows the capacity to spread and hide within the breast). 

For all of these reasons, I will need either an excision (redo the lumpectomy) or a mastectomy.  At least this is one decision that I do not have to think twice about.  I will get the mastectomy since this cancer has me scared to death, and I want to treat it as aggressively as we can.  The only "up" side to this is that radiation now becomes a question mark.  Apparently, when they do the mastectomy they will also remove some additional nodes, and if two or more have cancer, then I will also have radiation.  All of this comes after the chemo.

Which leads me to that pleasant topic.  This doctor laid out his protocol for me, and I understood it and it seems to make sense.  However, we really want to have the Emory doctors go over everything as a second opinion, if nothing else.  This doctor advised 20 weeks of chemo, to be administered via a port placed in my upper chest.  There would be two drugs initially, and I will research them and write about their details later.  They would be given once every two weeks, for a total of four treatments.  Then a different chemo drug would be given once a week for 12 weeks.  Alongside this is a bunch of medication to help with side effects, mainly to help with nausea and my white blood count.  I would need to return the day after the chemo for a big shot of some side effect medication.  I forgot to ask whether this is the type of thing I can drive myself to receive, or how long each treatment takes.  The only up side to being Her 2 positive is that there is a drug (Herceptin) that targets that protein specifically, and it has been really successful over the last few years.  Even ten years ago, the prognosis for Her 2 positive was not nearly as good as it is now.  

After all of that, then there would be a one month break, then the mastectomy, hopefully NOT followed by radiation, but that is unknown right now.

My biggest fear with all of this is that this cancer has shown itself to be aggressive, and it has infiltrated my lymphatic system to get into the node in the first place, so how do we know if there is cancer elsewhere in my body?  I talked with the oncologist about this, and reminded him that we have been told several different times that "chances are" that xx won't happen, or "it is very unlikely that you have it in your nodes" but as I said, the odds have not been in my favor (I keep hearing Effie's voice from The Hunger Games in my head).  I asked about getting a PET scan, and would that show any other cancer.  He said yes, but that it is a very expensive test and given my prognosis he doesn't think insurance would cover it.  However, he suggested getting a CT scan and a bone scan, which are two separate tests that together will reveal the same information.  Chris and I plan to do our own research to see whether we can confirm that. 

For now, we are moving forward with scheduling these new tests, and I cannot emphasize how much I would love everyone to pray with me that nothing else is found.  I keep telling my mind not to go there, because that would be Stage IV (if there is cancer in another organ) and the options begin to run thin.  The oncologist assured me that people with this type of cancer are symptomatic, which I am not, but I am sorry...it is difficult to fully reign in your mind sometimes.  I know I cannot let this define me.  I know I cannot succumb to the fear and lay in bed all day.  I know I have to trust the doctors (while diligently using all of my resources to confirm that trust).  But I also know that I am not in charge here.  I know I am part of a much bigger picture.  I do not know the exact role that I am meant to play.  I thought I was supposed to be the best mom and wife that I could be, a productive member of society, but how can I do that right now?  I will get it together, but for tonight, I am overwhelmed.  I am devastated.  I am scared. 

Tomorrow I will readjust and try to focus more outwardly than inwardly.  For now I am reminded of several points in Scripture that helped me with the pain of Shingles.....Romans 8:28 was a key phrase that so many different people either sent me via text, or wrote in cards, etc.  "...in all things God works for the good of those who love him, who have been called according to his purpose."  I will cling to the lesson that was so clear in our Bible Study's work through the book of James....that we are to "consider it ALL joy when (not if) we encounter various trials, knowing that the testing of our faith produces endurance."  And finally, Hebrews 12:1...such a good reminder..."Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us...."  Apparently this race has been marked out for me, and I am going to have to run it, whether I want to or not. 

Surgery

On Friday, July 11th, we had to be at the hospital by 7:30 am for surgery at 11:15.  Even though I wasn't supposed to eat or drink anything after midnight, I had permission to take a Xanax to help me get through all the prep.  After getting all the right arm bands, my first stop was radiology....again with the painful mammo machine.  I still had all kinds of bruising from the biopsy!  It took a few tries, but they had to locate the titanium clip that had been left behind with the biopsy.  After zeroing in on the right spot, they gave me a couple of shots of local anesthetic to numb me so that they could insert a larger needle/probe.  The goal was to reach that titanium clip with the probe then leave behind a tiny wire that would help Dr. Barber get to the right spot during surgery.  Then a bunch of blue dye was shot into my breast, also to help identify "stuff" during surgery.  During this process Dr. Sharma shared that I was the subject of some discussion at the doctors' meeting the evening before.  She said she felt like she already knew me.  It's always interesting to hear a doctor tell you that...not necessarily in a good way.    

I made it through these first steps without incident, and was calming down a little.  Then another tech arrived from "Nuclear Medicine" (who knew there was a Nuclear Medicine department at the hospital??) and they had the first doctor give me two big shots of the radioactive fluid right outside the areola.  The purpose here was to identify the sentinel lymph nodes, and see how the fluid traveled from my breast to the nodes close by.  After all of that they had to squeeze me into the mammo machine yet again.

I was then wheeled to another area where I had to have three minute pictures taken in a machine that looked like an MRI machine but was silent.  The tech then marked up the location of my nodes on my skin.

Finally I was wheeled to my pre-op prep room, met all the friendly nurses, received my IV, met the anesthesiologist, and talked over everything again with the surgeon.  The last thing I remember saying was, "Oh!  I think it's working. I feel fuzzy, like I just chugged two glasses of wine."

I woke up back in the same room, and was immediately cold with chattering teeth.  They gave me the same blankets as when I had both C-sections: clear plastic made like giant bubble wrap hooked up to a fan that blows warm air into the blanket.  As soon as I could talk, Chris was there and told me what I absolutely did not want to hear.  During the surgery it is customary to get an initial pathology on the nodes removed.  Apparently I have two sentinel nodes, of which both were removed, and in which they found cancer in one.  The wind was knocked out of me.  This automatically took me from Stage I to Stage II.  I know that it could be a lot worse, but THIS already seemed much worse than what the initial thinking had been.  So far, it seems that the odds are not in my favor.  Statistically, I shouldn't have breast cancer.  Statistically, a small percentage of women have the Her 2 positive results, while being ER/PR negative.  Statistically, the MRI results should have been found to be true during surgery.  And, why didn't the MRI see any cancer?  I assumed it was because there were trace amounts that could not be seen by MRI, but regardless, the cancer had moved beyond the breast and I was scared.

Inital Diagnosis

Looking back I can't really believe the plan that we cooked up in the minutes following that phone call from Dr. Fisch.  Chris and I knew we needed to keep the Wednesday appointment, but we didn't want this to ruin our beach trip that everyone had been so excited about, especially the kids.  We thought we would ask a couple of families from our church community group if they would be interested in coming to stay in the condo with our kiddos while Chris and I ran back to Atlanta for the appointment.  Later I was guilt ridden with the fact that we were so brazen to ask that of anyone, but somehow in the moment it made sense.  My natural instinct is to "stick with the plan" and the "plan" was to spend the week of July 4th at the beach!  The lesson that had been drilled into my head from the Shingles experience - that I am NOT in charge, and that I don't have to UNDERSTAND everything - was quickly forgotten, I guess.  I blame a bit of it on shock, too. 

So, our wonderful friends, the Jones family, basically dropped everything and drove to SC on Tuesday afternoon, so that Chris and I could return to Atlanta.  Our youngest, Jonathan, had since decided that he was not comfortable staying at the beach without us, so he came along also.  Once again, so much for MY planning.  I felt even worse about the Joneses coming all the way now that only one child was staying, but I had to let it go.

We met Dr. Bill Barber, a breast surgeon, at Piedmont the next day.  He had all of the pathology back, and slowly went through all of it with us, making sure we had some basic understanding as he went.  There was good news and bad news, as far as cancer goes.  The good news is that it seems to have been caught early.  The tumor was estimated at 6 mm (or 0.6 cm) and was called Invasive Ductal Carcinoma.  The bad news is that it is ER (estrogen) and PR (progesterone) negative, meaning hormone therapy will not work for me.  Also, the Her 2/new test came back with a 3+, meaning that my cancer is amplified and is strong.  The only good news there is that there is a drug that can help.  My Ki-67 test came back at 65% on a scale of 0-100%, so that was another disappointment.  That test measures the proliferation rate of the cancer.  As the doctor said, thank goodness we caught it early because it is an ugly cancer.  So, my initial diagnosis was IDC, Stage 1, grade 3.

We had to decide on a game plan, and I wanted to be very aggressive, so I assumed a mastectomy was the next step.  However, the doctor explained that the healing time for a mastectomy is considerably longer than a lumpectomy, and would require a longer wait to begin chemo.  Based on the "ugly" kind of cancer I have, it seems chemo is likely, but ultimately we need the oncologist to weigh in on that decision post surgery.  The thought of chemo was horrifying.  I have seen what it does to people, and while I am, of course, thankful there is ANY drug to help fight cancer, the thought of waging that war was daunting, to say the least.  If our circumstances change, we can always go back and do the full mastectomy if that makes sense a little further down the road. 

The next step was a full chest MRI.  I had that on Tuesday, July 8th, after we returned from the beach for the second time.  This time I was a little more prepared, and took a Xanax before the appointment.  I knew they would have to give me an IV and pump a bunch of blue dye in me to see what they needed to see.  The MRI sees more than the mammo and they wanted to double check both sides to make sure there was only the one lump.  I was beyond relieved, and thankful, when the results came back without any false positives (common) and the doctors could see clearly that there was nothing else in there.

That same morning I met with a Piedmont Genetic Counselor, who educated us on some of the breast cancer genes that have been discovered so far.  I was recommended for this testing mainly due to my age (young).  No one else on either side of my family has had breast cancer, so there remains a mystery as to why this has happened to me at such a young age, in particular.  This might be one of those questions to which we simply never get an answer.  I had to fill two vials with saliva (gross!), but again, just so thankful no more blood was needed.  We have to wait 2-3 weeks for results.  If any of these were to come back positive, that would definitely affect the decision about future surgery, since usually those genes increase your chances for recurrence.  Also, the presence of these genes generally increase your chances of getting a new, different kind of cancer, depending on the gene found.  Obviously, our fervent prayer is for this test to come back negative.  It breaks my heart that already what has happened to me might affect Caroline's chances, but to have a bad gene would be so much worse. 

The next step will be surgery on Friday, July 11th.  All we can do is wait, and pray, that the doctors get everything.  I know I already have a bunch of prayer warriors joining in this plea, and that is comforting.  We are also thankful that Dr. Barber was able to schedule the surgery so quickly, so that I will have time to heal before our much anticipated Yellowstone trip. 

Beginning the journey

There remains a part of me that is in denial that this is actually happening to me.  I can barely even say the "C" word, let alone comprehend that it applies to me.  But, I am also a realist, so I just keep telling myself that this IS actually happening, and that I will get through it. 

In case you don't know, I had my regular screening mammogram on the first Saturday of Summer Break, May 31st.  Prior to that, my wonderful OB/GYN, Dr. Jacquie Fisch, thought she felt something in my right breast, and urged me to make sure I had the mammo.  I am such a rule follower that I was planning to get the mammo regardless, but I appreciated her extra push. 

The screening mammo showed a small irregularity, so I went for a diagnostic mammogram on June 9th, and after they called me back three times trying to get clear pictures, I knew they must have found something.  Then, when I had to go speak with the Radiologist Doc in person, I thought....not good.  This doc showed me the images and said it looked like a small calcification, but that I would need a biopsy to know for sure.  

Unfortunately, when I tried to schedule the biopsy that same day, the first available appointment wasn't until June 26th.  However, I wasn't really worried since 80% of the time these biopsies return benign, and my family has no history at all of breast cancer. 

On the day of the biopsy I had my friend Kati with me, since I was still a little nervous, and she just went through all of this and more last Fall/Winter.  My main fear, though, was just getting through the procedure.  I wasn't really worried about the results.  I'm not sure exactly what happened last Fall when I was hit with Shingles on my face, then Bell's Palsy, but through all of that I apparently developed an inability to "stay calm" so I end up fainting, or having an anxiety attack, when these needle procedures are happening.  So embarrassing and ridiculous, but yet I don't seem able to prevent them.

Anyway, on that day I had to lay on my stomach on a metal table with a big hole in the middle.  It was not easy to position myself where ONLY the right breast came through the hole, but the Piedmont staff were very helpful and provided warm, folded sheets to help me get situated.  Then, the table was raised toward the ceiling, which was bazaar.  In order to do the biopsy, I had to be tightly clamped into the mammogram machine (big ouch) that was under the table, which then projected its picture onto a screen to guide the doctor.  I made it about 2/3 of the way through before what I now know as the beginning of a vasovagal response started.  All of a sudden I was overcome with nausea, then a wave of heat, then all of my peripheral vision began to go dark grey and start closing in.  At the same time i usually begin gasping for air because it really feels like I cannot breathe.  Again, the nurses were fast and awesome.  I had a cold cloth on my face, they were talking to me, and the doctor asked if he should remove the probe.  I remember saying, "I have no idea about the probe but I can't breathe!"  He then removed the probe.  For the the first time, I/we was/were able to prevent going into a full faint, so that part was good.  After my blood pressure came back up and there was color in my face again, the procedure finished quickly, thank goodness. 

The biopsy was on a Thursday, and we were scheduled to go to the beach on Saturday, June 28th, my sweet boy's birthday!  We were excited to try a new beach...Fripp Island, SC....right across from Hilton Head.   I had a lot of bruising on my breast, and wasn't allowed to get my chest in the water until Wednesday, but that was okay.  And my swimsuit covered up all the bruises, so I was glad about that, too.  We went to the beach on Monday morning and enjoyed the awesome weather, lack of crowds and just soaked up the quietness of being away from home.  We went back to the condo for lunch, then thought we would take a little break from the midday sun and hang around the back deck looking over the marsh.  It's not like me to take a nap during the day, but I think being at the beach all morning, then having a full belly after lunch made me so tired, I went to our room to lay down for a bit.  

Apparently I left my phone in the living room, because the next thing I know Chris is at the door saying that he has Dr. Fisch on the line.  For a split second i wondered if she calls  all her patients after a biopsy, then as quickly as that thought entered my mind, I knew the answer.  No, I don't think she does.  My bad feeling was confirmed as soon as I heard her voice.  I love her accent, but it did not disguise her nervousness.  It felt like a long time before, after three attempts, she was able to get out that my biopsy had turned up malignant.   She didn't have too much information, since part of my pathology was still out, but she did know that there was some cancer found contained within the milk duct, and some had moved out of the milk duct.  She had taken the liberty of making an appointment for me with a breast surgeon on Wednesday, July 2nd.  My first thought was that we needed to push back that appointment, since we were at the beach.  But my sweet husband, always the voice of reason, said to stop and think a minute.  How could we put off that appointment??  Wouldn't we go crazy waiting for a full week to get details about what we were facing?