Unremarkable

Just wanted to check in with folks. I've gotten some flack recently for not updating in awhile so here goes!

Trip to NYC was awesome and very refreshing. I have a post coming soon on the wedding and the weekend. Brad and I negotiated a new overnight feeding system and we both are feel like we are getting more sleep. Getting sleep is really crucial for me staying positive and keeping the right attitude about the situation we are in. It also helped that I haven't had any pain or fatigue this week. People can't believe that I have this terrible life-threatening cancer when they see me because they say I look so healthy. While I'm very thankful to be feeling so good, I am disappointed that the chemo didn't do more this round. I'd rather look/feel sick and the chemo be making huge strides in eliminating the cancer. The rounds of AC sorta went like this:

Round 1 - HUGE improvements, went from the breast being 3X the size of the other to being almost back to the normal size
Round 2 - Pretty good improvements, regained ground lost by putting three weeks between round 1 and 2
Round 3 - Stayed neutral, some progress made but then lost it in the days leading up to the next chemo
Round 4 - Lost some ground overall, tumors have actually grown this time

My oncologist has put in orders for 12 weekly rounds of Taxol with Carboplatin added in every 3 weeks. I'm pretty confident this is what MDAnderson will agree with doing next week. My doctor gave me two more studies from Germany and Japan with much improved results by adding the Carboplatin. She mentioned the phrase "throwing the kitchen sink" at the cancer. I'm all about it.

I want a pathological complete response so badly. If we don't get rid of all the cancer through chemo, I hate to think about the 3-6 weeks between chemo and surgery where the cancer comes back and is growing again. That would be pure torture. Lord, please let my cancer disappear with taxol and carboplatin!

The past two weeks I've noticed some pain in my eye, slight vision changes, and some headaches. These are all symptoms of brain mets so of course my thoughts go to more cancer. I asked my doctor for an MRI just to put my fears to rest. I had one done Thursday afternoon. The MRI is the one with a big tube they stick you in and tell you not to move for 40 minutes. They played Christian music for me which was nice.

My oncologist texted me thirty minutes before our appt the next day to tell me that the prelim report said that my brain was "unremarkable". Woohoo! Never been so excited to be called unremarkable! It was so nice of her to text me as soon as she knew. She said that she knows that even 30 minutes matters when finding out results like that. Also, tonight she texted me to let me know that my chemo would be at a different (further away) location so that I could have time to get a babysitter for longer. How considerate is she? Love her!

My sister-in-law and brother-in-law are in town this weekend with my niece Julia who is three weeks older than David. We are looking forward to more relaxing this weekend before our trip down to Houston next week. Life is good!

David's Birth Story

The day before David’s arrival, my oncologist called to tell me my blood counts had already surpassed the threshold we needed for delivery. I was so surprised. I went around the house literally jumping for joy (figured it couldn’t hurt now that I wanted to go into labor). I couldn’t believe it happened so quickly. I figured it would have been another 2-5 days until we could start the induction. What a HUGE answer to prayer!

My mother-in-law landed in Dallas just hours before the call- her timing couldn’t have been more perfect. I called my sister-in-law who had just delivered our niece, Julia, a couple weeks before to see if she had handy the list of “things you need to pack for the hospital”. She walked me through what I needed to bring as I ran around the house throwing things in a bag.

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This reminds me of going into labor with Noah…with Noah my water broke in the morning and doctors assumed they would have to induce me later that night. I figured I had all the time in the world. I did an interview over the phone, almost had a conference call with my boss to-be, we even went to Babies R Us to buy the car seat. The ladies at the checkout counter asked when I was due and we told them, “in a couple hours”.

When we got home I started having major contractions but we still hadn’t packed a bag. My labor went super quickly so poor Brad was having to hold me during the contractions and then the minute in between contractions, run around the house throwing things in a bag (see, sounds familiar right?). Brad pulled the classic “running through red lights” and “leaving the car parked out front in the tow zone” thing and I waddled very quickly went running in. We skipped past admissions and triage and went right into the delivery room. I was there for 15 minutes before I started pushing with Noah. I like to claim that I delivered Noah naturally without drugs, but really it was just because the anesthesiologist didn’t have time to get there and I didn’t have another choice!

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Once we arrived Wednesday evening, the doctors started up the drugs to induce me. It hadn’t done much by the morning so they started me on Pitocin around 6:30am. Throughout the day they slowly ratcheted the Pitocin from 2 up to 20 (not really sure the units) on the machine but I still wasn’t feeling the contractions. The doctor broke my water around 2pm and then I felt those contractions like whoa! I called for the epidural immediately! Once I had the epidural, I was feeling good. Of course, that led to my blood pressure dropping, in comes more medicine. That medicine makes me nauseous, in comes more medicine.

I felt so helpless lying there with the Pitocin controlling my contractions and an epidural chaining me to my bed. I loved that my last labor was just the baby and my body. No other interventions (listen to how hippy I sound! It’s that Boston midwifery in me!).

This time though I didn’t I have a choice. My body technically wasn’t ready to deliver David. This was all about the right timing for my chemo and needing to deliver him on that very day. I hate that things weren’t completely perfect for David- that he wasn’t able to come when he was naturally ready. I am thankful though that it was at least 37 weeks and not 34. That was a huge blessing.

So by 4pm I was getting pretty discouraged because I wasn’t making a lot of progress (only 3cm after 9 hours on Pitocin). I texted a few of my friends asking them for prayers and called a friend who used to be an OB nurse. She had long and difficult labors with her two kids and I knew she would be able to relate. She prayed with me and helped calm me down. At this point all we could do was wait (which I’m terrible at by the way).

The OB nurse that worked with us was awesome. We asked the night shift nurse to see if the charge nurse could assign us a really great nurse for the labor during the day. They definitely delivered (pun intended) and found us a rockin’ one. Her personality fit mine perfectly – she had an awesome sense of humor and was a self-proclaimed “A-type” personality. She told me I had to finish the delivery before her shift change at 6:45pm. She didn’t want to do all the work and then have some other nurse get all the glory right as the new nurse’s shift starts. We both said we were “goal-oriented” and that we would get it done!

Since I was still so far away at 5pm, we started apologizing to each other for not helping meet the others’ goal of wrapping this up before shift change. Then, essentially in the matter of minutes I was “complete”. I had to ask the nurse what that meant because I knew there was no way I was 10cm already. Talk about an answer to prayer! My OB nurse friend said she had never seen someone go that quickly between 3 and 10 after so much time on Pitocin. Thank you Jesus!

My OB had called to check my status to see whether or not she had time for a run. Since I was only 3 cm when she called, the staff told her she had plenty of time. They had to call her back and tell her to turn around and come in because a baby was coming out whether or not she was here! I was told that I needed to stop laughing so the doctor could get there in time. What a different (and much better) experience compared to Noah (where we had 2+ hours of pushing since he had a hand on his head).

My OB was able to make it in time and it only took two contractions to get him out. Woohoo! David was delivered at 6:39pm and in my arms at 6:44pm - as I pointed out to our nurse, one minute before shift change. Pretty awesome, right??

The tone in the room was different with David than with Noah. There were many more tears shed this time. It felt like everyone in the room was crying. I’m not sure why. Maybe it was the juxtaposition of the joy of birth and the three weeks prior of dealing with a cancer diagnosis? Maybe it was because we didn’t take a healthy, full-term baby as much for granted this time? Maybe it was the uncertainty of the future for this baby’s mom? Whatever the reason, lots of tears were shed.

I remember telling David as he lay immediately on my chest that I was going to make it. I had to make it for him. I wasn’t going to let him grow up without his mama. I had such a peace about the future holding him for the first time.

It was extremely painful (emotionally) not being able to breastfeed. One of my most precious memories from Noah’s birth was him nursing within minutes of being born. David was crying and rooting and there wasn’t anything I could give him to calm him down- very, very difficult.

In the days to come it was really sad missing out on that bonding time like I had with Noah. I really enjoyed breastfeeding and was looking forward to doing it again with David. It has been difficult emotionally not being able to provide for David but I know that it has all worked out for the best. There is pretty much no way I could be nursing and taking care of Noah and getting to all my doctor’s appointments and dealing with the physical effects of treating cancer. In some ways it is a blessing that feeding David is so quick, that he sleeps so well at night, and that someone else can always feed him if I need them to.

We are so incredibly thankful that David’s birth was a complete answer to so many prayers- my white counts rebounded at record speeds, David was born without a C-section, I didn’t have to delay chemo to heal, and most importantly, David was born completely and totally healthy despite being induced three weeks early and having a round of chemo while in vitro.

We praise God for working all things together for good. He once again proves He is in control and is so, so good.

Final Round of the Red Stuff

Fourth and Final Round of AC

Check out my rockin' port and the red
Adriamycin going in to kick some cancer butt!

Monday was my fourth and final round of Adriamycin and Cytoxan. I have mixed feelings about this. Part of me is happy that we've made it through the first phase of chemo. Most of me is just scared that we aren't going to be able to get rid of all the cancer through chemo since I still feel large tumors inside my breast and have many swollen lymph nodes. I still want a pathological complete response so badly and am praying like crazy for it!

I was surprised by how low my white blood counts were. They didn't go up very quickly over the weekend and were below the threshold for doing chemo. The nurse had to call my doctor to get the approval to administer the chemo. This makes me very nervous for phase 2 of chemo. I'm pretty sure my counts don't go up with more chemo, only down, potentially delaying chemo rounds. eeek. Let's pray that doesn't happen. 

Because my counts are so low, I'm starting to wear a mask places. I look so cool with my bald head, pushing a newborn around, and now a mask. Today at Boston Market the cashier gave me "drinks on the house". So at least I'm getting free tea out of the deal- gotta love that!

I slept the entire chemo session Monday (that picture is from round 3, I wasn't nearly as chipper this week). My dad watched David so I could come home and sleep the rest of the afternoon. Then today after my steroid shot I again slept the rest of the afternoon while my Mom watched the baby. Normally I feel really bad the day after the shot (that's when I spent the whole day in bed last cycle), so the trend of the week may repeat itself tomorrow. I'm really not okay "wasting" my days/weeks in bed. Drives me bonkers!

Beacon of Hope

During chemo I was doing my devotional from a book that my fellow cancer buddy Jamie had given me. The inside cover was signed by a group called "Beacon of Hope Cancer Ministry". I googled them and found it is a support group that meets the third Monday of the month at a church a few minutes from our house. It just happened to be the third Monday, so I emailed the contact and they invited me to come that night - again, these "coincidences" have stopped surprising me.

I really enjoyed the session. The facilitator was excellent. She has lost five siblings (including two in the last six months) and both parents to cancer and was formally the director of a cancer clinic. Surprisingly out of the 20 or so folks there, only two of were currently fighting cancer- the rest were survivors that had beaten cancer. Talk about a hope filled room! They are making me a quilt and I'm super duper excited about it. It's going to be turquoise- weee! I'll definitely be going back. 

Get it? ACUTE baby! Onesie credit: Kris J.

David's One Month Check-up

I'll leave you with some non-cancer related good news! David is growing big and strong. Not only did he surpass his birth weight (which he hadn't done by the two week mark), he flew by it! He was 6 lbs 9 oz two weeks ago and today he was 9 lbs 5 oz. He grew inch too! He was previously in the 10th percentile for weight and now he is up to 50th. He has a long way to go to catch up with big brother Noah (aka "the Tank") who is in the 99th percentile for everything but this formula-fed baby is going to catch up with the breastfeeding ones before we know it!

Happy One Month David!

We made it to a month! David is eating, sleeping, and generally doing really well. I'm so thankful for a healthy baby. After reading a few pregnant/cancer survivor stories, I feel so grateful that I was so late in my pregnancy when I was diagnosed and that David didn't have to go to the NICU.

A few people have asked for baby pics so here are a some that I've snapped on the iphone. We will have a bunch more coming hopefully this week when the newborn session pics come back. 

Noah loves giving David hugs. It is so precious and melts my heart!

Port (Re)placement

Port Placement #2
Yesterday I went in to have my port checked and then subsequently replaced. I had chest pain last weekend that led to a chest x-ray that showed a kink in the line. The nurse had trouble drawing blood from the port which was due to the line being too short and being up again the wall of the vein. All that to say- I needed a new one.

The procedure was really simple this time. I was in a cardiology/cath lab area of the hospital instead of day surgery. I wasn't put completely under like the first time, just twilight stuff and local anesthesia. It was done by a Physician's Assistant that does 5-6 of these port placements a day. It was kinda fun being in the room and seeing the x-rays and what was going on.

The only little bit scary thing was that I was nadir-ing (my white blood counts were very low making me more susceptible to infection). The steroid shot is supposed to prevent that from happening but my doctor said it is just three rounds of very aggressive chemo taking its toll on my body. The Friday before my last chemo, my counts were up nice and high (5X of what they were this time). We are going to have a couple extra days between round 4 and 5 due to a holiday and trip to MD Anderson at the beginning of September. I will probably need the extra time for my counts to come up enough to safely give the chemo next time.

Recovery this time around feels like it is going faster. I haven't been taking as many pain meds and am feeling pretty good today. Thanks everyone for praying specifically for that!

With my new port- yay!

Oncologist Visit
After my procedure, I had an appt with my oncologist. I just love her so much!! She spent an hour and a half(!) talking with me. She never rushes me and spends time answering all my crazy questions. We went over the MD Anderson paper I referred to in Prognosis Data. She always give me such hope and still somehow doesn't sugar-coat anything. I appreciate both aspects so much. The general takeaway was the same as the blog post. Yes, the numbers are pretty dismal, but a certain % of folks do make it through and nothing indicates that can't be me. I haven't had a distant recurrence yet (spread to my other organs) and until I do, I'm still in this game!

She thought my tumors had maybe gone down a little this cycle and the lymph nodes definitely came down a little. Speaking of lymph nodes, I asked her how many of my lymph nodes were "involved" (had cancer) because all the radiology reports ever said were "excessive". She said they stop counting after a certain point so I probably had 20-30 lymph nodes that were cancerous- um, say what?? I asked her how many lymph nodes we had in our armpits- ~30. Seriously, this stuff is just becoming funny now.

Here's another crazy number- there is thing they test at the same time as the hormone receptor stuff called a Ki-67. It is the percentage of cancerous cells actively dividing. I saw a few definitions of high/med/low cutoffs online. One said greater than 20% was high, another said 50%. Guess what my Ki-67 was? NINETY-SIX PERCENT. That means ALL the cancer was actively dividing. Holy moly. I asked my doctor about this too. She said, "Of course your Ki-67 was high. You are IBC, triple negative and we were watching the cancer grow before our eyes." Touche.

On every scale used to judge cancer, I feel like I'm always in the worst possible position - IBC, triple negative, high grade, Ki-67 of 96%, 20+ lymph nodes involved. The way I'm looking at this is God has given me an opportunity to have the biggest possible testimony while still giving me a chance at being cured.

Oh! Here is one good thing. She printed off a study on the experimental drug I've mentioned previously that she is considering adding into the second phase of my chemo- Carboplatin. It has had really good initial results in helping increase the percentage of triple negative patients achieving a complete response. She still wants me to get MD Anderson's opinion but from where I'm sitting now I'm not sure why we wouldn't at least try it even though it isn't completely proven out yet. I think the combination of it and Taxol are going to be a beat down from a side-effect perspective and it will make my second phase of chemo 12 weeks instead of 8. I can do anything for 12 weeks and anything that increases my chance at living, even a little, is worth it.

Chemo is scheduled for Monday, Neulasta shot Tuesday, and then NYC with Brad sans kids on Friday- can't even wait!

Praises + Prayers (8/14)

Praises

+David is doing really well. He is a super easy baby and so much fun to cuddle with! 

+I had chest pain this past weekend that ended up being a relatively minor fix with medicine and seems to be getting better.

+The chest pain led to an X-ray that found an issue with my port a week before chemo so we have time to fix it to keep everything on schedule.

+I felt good emotionally today after being in a funk the last week or so. I’m having fun working on projects and getting the nursery finally put together.

Prayer Requests

+To have a pathological complete response (pCR) from the chemo. This round of chemo hasn’t seemed quite as effective as the last two have been. I haven’t felt my tumors shrink at all, in fact it seems like they may be growing. :-/ The next type of chemo (two rounds from now) needs to be outta this world to get rid of all the cancer before surgery. (FYI, found stats that only 14% of triple negative IBC patients have a complete response. So if I do have a pCR, it will be a miracle.)

+Wisdom for the doctors- Right now the doctors are debating about adding a more experimental drug (Carboplatin) into my regimen with the Taxol. It has shown to have good results with triple negative folks like me in a few studies. Please pray that God would give them wisdom to know whether or not to add it.

+My port has a kink or leak in it. I’m scheduled to have surgery on Friday to have it replaced. There is a chance they won’t have to replace it if there is an easy fix. Pray that either we don’t have to do surgery to fix it or that surgery would go smoothly and recovery would be very quick.

+Protection for my mind- that I would stay positive and continue having hope that I can and will make it!

In general, right now I'm praying that 1) the cancer would be eradicated from my body, 2) my other organs would be shielded from the cancer while we work to get it out of my breast/lymph nodes, and 3)  I would have peace during the process.

Thank you everyone for continuing to pray for me. 

Prognosis Data

More recently I’ve had trouble staying positive and not being scared. This is directly correlated with the amount of internet research I've done on IBC stuff. I’ve had everyone close to me over the last week essentially ban me from the inter-webs. However, I'd like to argue that learning this stuff and coming to grips with the situation at hand isn’t necessarily a bad thing.

The first few weeks of all this were actually pretty great- no real symptoms to speak of, lots of cards, fun gifts, and nice messages. You almost forget for a second the reason all this love is getting showered on you- oh yeah, I have a death sentence on my life at the moment! I deep down truly believe I’m going to make it, that God is going to perform an amazing miracle and get all the glory for saving my life. So you take that on top of getting told multiple times a day that- “You’ve got this!” “Cancer doesn’t know who it picked to mess with!” “You are going to beat the odds Ashleigh!”…and soon you forget how grim the situation actually is.

All that to say, I don’t think a reality check was totally out of line this last week. For me, understanding the data and stats is part of my DNA (anyone that knows me personally will be nodding their head right now). There are currently three known hormone receptors on breast cancer cells- estrogen, progesterone, and HER-2. These describe how the cancer cells are fueled to grow. If you have one of these receptors, the doctors can use targeted therapies to decrease your cancer's ability to grow. If you have none of these receptors (aka triple negative), then it is unknown what is fueling your cancer cells and therefore your cancer will not respond to these targeted therapies.

I found a paper from MD Anderson that described the prognosis of patients like me, IBC & triple negative, vs. IBC & hormone receptor positive patients. The conclusion of the MDA paper was that the outcomes for IBC folks are much worse for triple negative than other hormone receptor types. Below is a chart from the paper that shows survival curves for 316 women with non-metastatic IBC that were treated at MDA with similar drugs and treatment as I will receive. The four lines represent four subtypes of hormone receptor status in the study - triple negative (TNBC), HER-2 positive (HER-2+), estrogen positive (ER+), and both ER and HER-2 positive. The y-axis (vertical) is the % of people still alive and the x-axis (horizontal) is the number of years.  Here are my thoughts on the data (you can click on the picture to make it bigger fyi):

For anyone whose eyes glazed over at the chart, the takeaways are:

• IBC triple negative folks treated at MDAnderson in more recent years have a 50% chance of making it 2 years and 42% chance of making it 5 years, while the other IBC subtypes are significantly higher, for example IBC HER-2+/ER+ has a 73% 5-yr survival rate
• After 5 years, the other subtypes often have the cancer show back up making the survival curves continue to go down. For the 42% of triple negative patients that make it to 5 years, cancer rarely shows back up for them.
• My plan is to make it to 5 years, throw a giant 5th bday party for David, and then put all this behind me. If I make it past the 2 year mark, I can essentially move on with my life at that point. Sounds great, right?

While the stats did freak me out at first, I know how probabilities work- while there is a % prognosis, I will be either a 1 or a 0- alive or dead in 2 / 5 years. Seeing blogs or supposedly "survivor" stories of IBC patients that have passed away is obviously depressing, but some of these women do make it through. Why can't it be me? In fact, after searching for survivor stories and only finding ones where the women ended up passing away, my friend Jamie hooked me up with an IBC triple neg survivor contact:

I spoke with Michelle, the first fellow-IBCer I've met, for an hour this week. She first started having symptoms when her fourth child was 2 weeks old. She was misdiagnosed and on medicine to treat "an infection" for 9 months(!!). She had 24 positive lymph nodes in her armpit and some under her breastbone. So there she was with the worst of the worst breast cancer, single parenting 4 kids under 6 years old. She didn't have a complete response (there was cancer still there after the chemo) and the surgery didn't have clear margins (the surgery did not remove all the cancer). Her doctor put her on an experimental chemo drug that ended up saving her life. That finally cleared the cancer up, they radiated the heck out of it, and she is still here six and half years later- praise the Lord!!

Talking with an IBC survivor out past the 5 year mark definitely helped this week. Michelle's main piece of advice was to focus less on the stats and more on caring for your kids. I will try to limit my IBC-research in the future and not focus so much on the "stats". But I will say this, now knowing the stats, if I do make it, everyone will know that it truly was a miracle!

"Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead." - 2 Corinthians 1:9