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

Chest Pain

Over the weekend I had been experiencing chest pain when I took in deep breaths or when I swallowed. It was isolated to just the right side behind my breast. It was mostly just annoying, not too terrible of pain. I called over the weekend to make sure it wasn’t something more serious and doctor on call told me it could be a number of things and I should go to the ER to get a chest X-ray if it got any worse. I waited until Monday to check back in and the folks at UT Southwestern were pretty insistent that I go get an X-ray that day and meet with them first thing the next morning. They said that I could definitely have a tumor in my lung without yet having shortness of breath. I told the medical folks that I had just had a lung X-ray with the port surgery but that seemed a long enough time ago (2-3 weeks) to warrant another one. Needless to say, I was pretty stinking worried. They also said it could be thrush but I didn’t have anything weird going on in my mouth so that didn’t seem likely to me.

I’m soooo thankful that the NP called me that night with the results. My chest X-ray came back totally clear. Lungs looked perfect. What a relief that was! Currently they are thinking I have infectious esophagitis and I’m on medicine to hopefully clear it up.  At this point, anything sounds better than metastatic cancer! I’m sure this is one of many random symptoms/issues I will have along the way.

So I thought we were in the clear but then I got a call the next morning telling me after further inspection of the X-ray it looks like there is a kink in my port line. On monday the nurse had trouble drawing blood from the port, so that would make perfect sense.  What that means is I’m scheduled to have a new port placed this Friday morning- yay more surgery! They will put dye into the line before surgery to make sure it definitely needs to be replaced (if there is a leak or something?). I’m glad we found out this week so we could get it fixed in time for chemo next Monday. So my esophagitis led to an X-ray which led to finding a potential problem with the port that could have led to other problems and delayed chemo.  What a blessing!

I'm disappointed in my reaction to thinking the pain was a tumor in my lung. I was tearing up in the X-ray room, crying as we left the hospital, sobbing on the way home picturing the boys growing up without a mom, and making plans for the next month before I would die.  I think it made me realize that I'm not truly "holding my life loosely". Over the years I've worked to hold my home, job, even my family members loosely - that is, recognizing them to be gifts from God that He could easily take away if it was His will. I honestly never considered that I needed to hold my very life loosely.  Just as I am only a steward of the money or material possessions God has blessed me with, I am only a steward of the time on this earth God graces me with. My hope is that I would be a good steward of the money, talents, and now time, that has God blessed me with- no matter how long or how short that may be, while knowing He has a greater purpose if He does choose to end my life through this disease.

Happy 31st Birthday Brad

Brad turned 31 this weekend. I was pretty afraid that cancer + a newborn was going to put a bit of damper on his birthday. We have some ah-mazing friends that came to the rescue this weekend and made his birthday pretty stinkin’ awesome.

Our good friends the Deans (previously mentioned here) drove in (with two kids under 2) from Houston for Brad’s bday. They surprised Brad when they showed up for dinner at Chuy’s along with the Bryants (previously mentioned here). Good friends + Mexican food = Brad in his happy place. J

Everyone came back to the house after dinner for dessert. Brad has had the same coffee angel food cake made for him every birthday for his entire life. At one of my wedding showers, his mom very kindly passed the torch to me with an angel food cake pan and the recipe. I’ve had a few run-ins with the cake in previous years and generally don't have a good relationship with the cake. For instance, one year I made it without the main ingredient, coffee, and had to pull it out of the oven after it had already started baking which, if you know anything about baking angel food cake, isn’t a good thing. So there I was stirring the coffee crystals into the half-baked cake. Then I came back a few minutes later because the oven was starting to smoke.  At the time we had a half-height oven so when I put the cake in it just barely fit. When I opened the oven the cake had risen above the pan (which angel food cake does) and started baking around the oven coils. So I ripped the cake out of the oven (leaving top of the cake hanging from oven coils) and put it in the oven below (that was at room temp). Needless to say it wasn't my finest baking work. This year Allison offered to make the cake for me and bring it up from Houston. It was deeelicious and saved me from whatever baking horrors awaited me this year. Thanks Allison!

The guys went out the next morning to shoot clays at a course nearby. Brad doesn’t get a ton of guy-time these days so it was great of the husbands to think to take him out. We got back together for lunch on Saturday and it was sad to say goodbye but we will see the Deans again in Sept for my next MD Anderson appointment.

My friend Jessie took a day of leave from the military and came in for the weekend to spend time with our family. I wasn’t feeling good on Sunday morning and she made Brad’s bday breakfast for me. It was great having her positive energy in the house! Also hard to say goodbye to her on Sunday but she will be back in October for a girls weekend we have planned- can’t wait!

Our good friends the Crails (previously mentioned here) hosted us for Brad’s bday dinner Sunday night. Clayton is known for his meat smoking skills and Paige is known for being awesome at hosting and cooking. Every drink and dish is always from scratch and delicious! I told Brad dinner was at a surprise restaurant that we hadn’t been to yet (they just moved to Dallas and have a new house) but it was a good idea to go hungry. I also said it was a BYOB place and we needed to pick up beer on the way there. When I came out of the grocery store on the way to their house with a hydrangea he picked up on the “surprise”. We had an awesome time hanging out with them and are so glad they are back in God’s country.

I’m so thankful for such a loving and supportive husband and so thankful for our many friends making this weekend so special for him/us. Yay!

Five thoughts

1. Wednesday was the first day I've spent the whole day in bed. This is partially due to the neulasta shot (the steroid shot that helps make my white blood counts recover faster) making me feel like a truck had hit me, and partially because I could. I only had to get up and feed David every 3 hours, but besides that I could just keep sleeping. It was pretty nice in a lot of ways. A very nice friend from church picked me up that evening and drove me to a girls event. It was good to get out of the house and put my attention on something other than cancer.
2. Spent a long time reading this blog Tuesday night. The author lost her first child at 8 months old and the doctors couldn’t figure out what happened.  As if that isn't enough, her most recent post dealt with her husband going into hospice care after battling brain cancer for 5 years. I pretty much just sobbed and sobbed that night wondering if we will have a similar ending. From the little bit that I read, the author is an amazing Godly woman with incredible faith. For some reason, it hits closer to home when they are saying all the same stuff we say here on this blog, and then they have that ending. God chooses not to work a miracle in his life, but I still expect one in mine…tough to work all this out in my mind…
3. Then I came across this blog later that evening- a PhD in astrophysics with IBC, two young kids, huge IBC advocate. Her last post was of her going into palliative care and then that was followed by her husband’s post of announcing her passing.
4. Thank goodness I found this blog as the last one before going to bed that night – someone who had triple negative IBC and made it to the 5-year mark and is now “cured”. For some reason it is really comforting to know someone has made it before me.
5. I don’t think I mentioned this on the blog, but I talked to a lot of people about expecting and praying for a “triple win” and then it all actually happened! The triple win was 1) David was born healthy and without a c-section, 2) My cancer responded to the first round chemo, and 3) The cancer has not metastasized. Pretty rockin’ how all of that worked out - all as timely answers to specific prayers.

*Blog post format credit: Liz S. :-)

Stage 3

After a very long day down at UT Southwestern on Friday, I'm very pleased to share that my scans came back negative for cancer spread to any other organs. It is a huge answer to prayer and another miracle in this journey! Thank you to everyone that prayed and fasted last week- your prayers were answered yet again.

To show you just how busy my day was Friday, here is a run-down of the schedule and procedures:

7AM – Arrived at UT Southwestern - Zale Lipshy Hospital to drink my barium sulfate. I had to drink two of these delicious milkshakes. My choices were banana, berry, or mochaccino. I chose berry first and I chose wrong. For my second I went to the mochaccino per the receptionist’s suggestion. It was better but I think it was because I was holding my nose while sipping the cool liquid chalk- yum.

8AM – They have to put “contrast” into your bloodstream while the CT scan is going so I got to have my port (the thing I had surgery for last week to implant that gives folks direct access to a vein) accessed for the first time. The needle they use is pretty scary looking so I was freaking out a little. I didn’t have the numbing cream for the port yet but the access line didn’t hurt too badly to insert. Yay!

8:30AM - CT scan of my abdomen and chest. When they put the contrast in the IV, it makes you feel like you are peeing in your pants. Sure glad the lady warned me. I would have been super embarrassed thinking I had just peed all over the CT machine!

10:00AM – Drove to another building on the campus and arrived 30 minutes before my next appointment. Who should I see sitting in the waiting room but a minister from our church - the same minister who called the day I was diagnosed asking if there was anything she could pray for, just happened to be there taking a family member to an appointment! She's also the same minister who visited us in the hospital when David was born.  I’ve honestly stopped being surprised when “coincidences” like this occur. It was wonderful getting to chat with her and having her pray for me in the waiting room. God is so good!

10:30AM – Was injected with radioactive something-or-other in preparation for my bone scan. They keep it in a lead container. Looks scary, right?

11:00AM – Drove to yet another building on campus for my genetics appointment. It is wild what they can find out and tell you about gene mutations in your DNA! I’m having 25 genes evaluated for mutations; two of them are BRCA1&2. These will tell me whether I’m likely to have ovarian or a second breast cancer. If this comes back positive I will most likely have the other breast and my ovaries removed. Other genes would say whether I’m likely to have any number of other types of cancer. This lets me know if I should have increased screenings down the road.

I thought this appointment was going to be scary but it turned out to just be ridiculously interesting. I love science! They have models that spit out the likelihood of being BRCA1or2 positive. Because I don’t have any family history of cancer, it gave me only a 7% chance. If my mom had been diagnosed with breast cancer at age 50, it would be a 33% chance (I asked her to go re-run the model with different parameters, just because I thought it was cool.) J

12:30PM – Took a shuttle this time to get back to the first building for the bone scan. The bone scan took a pretty long time. I had to lay absolutely still, in silence, for 45 minutes with a big piece of metal a centimeter from my face. I just ended up praying the whole time and making a mental list of all the things I want to do after I beat cancer…I see a future blog post forming…

2:00PM – Walked back to the final building for my lab work. It is so easy to draw blood with a port. I’m liking this port more and more!

3:00PM – The moment of truth! I had the same feeling of anticipation I used to get before semester grades came out or when you are about to find out whether or not you got into a school. And, as crazy as it sounds, I really like that feeling. I had such a peace the entire day. I was honestly just really excited about finding out for sure that I didn’t have metastatic cancer. I was so confident that that would be the result. In fact, I was so confident that I offered to go to the results appointment by myself. Brad insisted on coming so he was with me when we met with the oncologist.

My doctor told me that the test results looked good. But then she said they had found a 1-2 mm spot on my lungs and I started crying. She quickly reassured me that everyone has spots like that on their organs and that it isn’t cancer. She said they would never try and biopsy a spot like that and that we would just make sure it wasn’t growing next time we do a scan. I also had a “very tiny nonspecific spot that would not be considered metastatic” on my liver. Again, this is just that everyone has stuff on their organs.

It was evident how well my doctor already knows me, since she walked me through each imaging report line-by-line.  After each line, she would turn and look directly at me, saying some variant of "that's totally normal", or "that is not cancer", or "don't freak out".  I think she suspected (and Brad can confirm) that without that level of explanation I would have read the reports later and phrases like "very tiny nonspecific spot" would get translated by my brain to read: "very cancer nonspecific CANCER".  Thankfully my doctor cares enough to spend the time with me to pre-empt those doubts - I'm very thankful for that.

So officially the scans did not find metastatic cancer in my body. I’m stage 3! I debate on whether I’m 3B or 3C because the lymph node above my collar bone is no longer there (which would be 3B) but I know it was there to begin with (3C) except that we don’t know for sure whether or not it was cancerous (it was never biopsied). I don’t think it makes a big difference either way on B or C though.

I asked the oncologist what percent prognosis I had but she didn’t want to give me numbers saying that those are interesting when you are giving a talk on your research, but that she doesn’t do percent survival rates for individual patients. She said for me they are going to fight this and get it out of me and that we will beat it. Period.

I have seen research from MD Anderson on a more recent 30-year study that says the 5-year survival rate is about 50% for non-metastatic inflammatory breast cancer. That rate goes up to 73% if you have a complete response. Which in my mind I’m wondering what happens to the 27% of patients that have all the cancer completely out of their body after just chemo, that then they die of cancer before the 5 years are up? I guess it comes back and they aren’t able to keep it at bay?

So flip a coin and that is the probability of me being here in 5 years. Honestly, I’ll take it at this point.  Compared with some of the other stats I’ve seen along the way, 50% sounds like a dream- a very doable dream.

Guns up- let’s do this!