Got me some chemo!

After two delays last week, I finally got some Taxol in my system on Friday - woohoo! My platelets and WBCs came up- high enough where we didn't even have to call the doctor to get approval. My WBCs were super duper high - 14,000! Craziness.

Click to enlarge

We've scheduled the next chemo for next Monday. We really need it to happen that day because the next day I fly out to be with my family in NC for my brother's wedding (yay!). That will give us a week and three days so hopefully that is enough time for all the numbers to come back up.

The next few weeks will be very hectic. I'm excited about all of the activities/travels/visits, I just hope my body and energy is up for it all! 

Delay, Delay, Delay

My platelets were too low at my checkup last week, so Chemo was moved from Monday to Wednesday (today). My white blood counts were super high last week so my doctor instructed me to stop taking the Neupogen shots. I asked about continuing to take the shots (just in case) because I didn't want my White Blood Counts to go back down and hold us up in the future.  

It turned out today that my platelets were okay. They rose pretty quickly over the weekend and are back up to where my doctor would allow chemo. (Thank you to everyone who has been praying for that- it worked!) But unfortunately my WBCs were once again the culprit - too low for chemo. [sad face] Now the plan is to do two days of shots and try again Friday. I should be good by Friday. I just hate putting almost two weeks between treatments. One week of chemo killing the cancer, one week of the cancer growing.

At this rate, I will be super lucky if I'm able to finish all my treatments by Christmas. "All I want for Christmas is to com-plete chemo, to com-plete chemo, to com-plete chemo..." Please pray for both WBCs and platelets to rise quickly between chemo treatments to have as little time as possible between infusions. I need chemo (on schedule!) to wipe out all the cancer cells!

Nursery

Because I'm A-type and crazy, as a way to stay sane while at home with cancer + baby, I've started doing projects. I was jokingly telling some coworkers at lunch this week that I created a list of projects with subtasks and asked Brad to prioritize them for me and suggested that we have weekly status updates on each project's status. No one at the table was surprised. (If you know me in real life, I'm sure you aren't surprised either.) 

One of my first projects was the nursery. I know technically that should be done before the baby arrives but in my case it always seems to get done 2-6 months after the baby shows up. When Noah was born we were in a 1 bedroom, 500 sq ft, on-campus dorm in Boston. Noah's nursery was pretty much a box in the corner. He didn't seem to mind. When we moved back to Dallas after graduation, I got to turn our second bedroom into a nursery- 6 months after Noah was born.

With David's room I had every intention of finishing it before he arrived. We had moved into a house in the suburbs just weeks before my diagnosis. The house had an unfinished room on the first floor that works perfectly as a nursery, except that it was unfinished. We had gotten the majority of the house unpacked before the news hit. The only thing that was left was the nursery- carpet, paint, a crib, a glider, decorations all still had to be done. We technically got the carpet in before the baby came. It was a running joke about which was going to come first- the baby or the carpet.

I had to take a deep breath and realize it would just take a little longer than expected to complete the project but I'm happy to announce that as of last night it is complete! Yayayay!! You have no idea how happy this makes me to have this room completed. There were a handful of small projects that weren't done by the time I started work for Noah's room so I had the chance to finish them up for David. Man, it felt good to check those boxes after a year sitting un-done.

David's Nursery
(btw, why do we call it "David's" or "Noah's" nursery?  The baby is totally unaware of his/her nursery...let's call it like it is: "Ashleigh's" nursery) :-)

0. Sabrina painted the nursery when she was in town- thanks Brina!
1. Velvet drapes and pillow - Ikea
2. Painted canvases- Used 3 of them from Noah's nursery and painted a new one with a D
3. Glider from Target with a million coupons that made it a third off
4. Crib from Target - the cheapest one that was white
5. Made a crib skirt - had this fabric for over a year and finally made it - woohoo!
6. Standard letters/ribbon from Michael's


7. Ikea lamp and painted a lampshade with chevrons - This took three coats of paint to make look good and was surprisingly the most frustrating part of the whole room!
8. Made tissue paper poms
9. Ikea mirrors - $2 each!
10. Replaced the white wooden knobs (used those for the David letters) with glass turquoise ones from Target








11. Painted frames from Goodwill white

12. Both gifts from friends that happen to match perfectly!

13. Ikea lamp












14. Inspired by this
















15. This was the final project- sewing changing pad covers - woohoo!

Dad and the kids enjoying a book in the new nursery!

Platelets Now Delaying Chemo

Platelets

I went to see my oncologist last Friday and found out that my platelet levels are very low. Here's what I've learned about platelets:

• Platelets are the stuff that help your blood clot
• It is dangerous to have your platelets too low (think getting cut and not being able to stop the bleeding)
• Chemo lowers your platelets
• I have to have my platelets up to a safe level before they can give me more chemo
• There isn't a medicine or injection that can increase my platelet count (like there is for my white blood counts)
• If I was in an emergency situation, they can inject me with platelets from a blood bank
• Platelets have a short lifespan so if they injected me with some it would only be good if I was about to go into surgery, not for upping it for chemo

Here's what my platelets have been up to the last few months:

click to enlarge

It turns out that my platelets were below 100 last chemo round but my doctor let it slide because she didn't want to delay my chemo any longer. When I went in on Friday they were half of what they were so she pushed my chemo out two days (from today to Wednesday). I was pretty upset. I feel so helpless. There is literally nothing I can do to increase my platelets. I can't run more, drink more water, stand on my head, take a certain medicine - nothing.

My doctor told me we are going to have to "go with the flow". Anyone that knows me, knows that I'm more of a "stragetically plan then optimally execute" kinda gal. It is very difficult to see the calendar continue to get pushed out more and more.

The odds for beating this are already so dismal. Anything that extends the interval between treatments only increases the probability of me being on the wrong side of the curve. I really, really want to beat this, but oh so very little of this is in my control. The only thing I feel like I have power over is my attitude and outlook. So I try to stay positive, but after that there isn't much I can do except keep hoping and praying that God will spare my life. So I do that too.

On a happier note, your praying for white blood counts worked! My WBC were super duper high last Friday. So high that the doctor told me to stop taking the shots until the next round of chemo. Sweeeet. I've been going all kinds of places without a mask. It feels like freedom to know that my counts are high again. 

If you are praying for me, please add platelets to your list of things to pray for. Please pray that they will also rebound at record speeds. Pray that I will be able to "go with the flow" and relax, knowing that God is still in control. 

Psychologist

I went in to see the cancer psychologist while I was at the cancer clinic seeing my oncologist. I thought it would be healthy to check-in with him every now and again. He has gone through this with thousands of other patients but this is my first time doing this. I figure he probably has a few things figured out that would help me through this journey.

The biggest thing he offered me this time was perspective. For me, this is the saddest, most roller coaster-y I've ever been, so it feels very extreme. After our hour together he said that I was handling this whole cancer thing extremely well. So apparently on the spectrum of all cancer patients, I'm not doing so bad. 

Another interesting analogy that he offered was about anti-depressants. I'm on a low-dose one, prescribed in a preventative manner. The OB and oncologist practically made me get on them after I delivered David. I was hesitant at first because I felt really good and was generally happy despite what was going on. But I knew I didn't have time to get depressed and be in a funk with two little kids to take care of so they convinced me to start taking it. And let's be honest, I need all the help I can get right now!

He said that anti-depressants are like a chair. A chair doesn't lift you up to the ceiling, just like these drugs can't make you happy, grateful, or hopeful. What it does is keep your bottom from hitting the floor. Many people ask him if the drugs are working and he asks them, is your butt on the floor? If no, then it's working. 

This made me feel better because I always feel a little guilty when people comment on "how well I'm handling this," thinking that it is probably just the drugs doing it. He said the way I'm handling it is extrodinary and I told him I honestly can't take credit for it. Having joy in the midst of this situation isn't a testiment to my own mental or personal fortitude- it is the Holy Spirit at work in me. Being happy and positive right now is not a logical reaction to what I'm going through. It is only because of the strength I derive from my personal relationship with the Creator of the universe that allows me to respond in a supernatural way. 

Party

The family went to a birthday party for someone from church last Friday evening. We haven't been out socially as a family on a Friday or Saturday...ever? It was actually really fun. There were tons of other kids there so it made Noah running around a-okay. We didn't have to worry about him breaking anything or bothering people since everyone else had kids too and understood. David got passed around the whole evening. He never was set down once. 

We are so thankful for the community we have at First Baptist of Allen. Everyone has been so supportive. It was fun to hang out and talk with everyone. I hope we can start to put a little more dimension to our family than just the "cancer family".

Visitors

Over the next month we will have about 15 different people from out of town coming to our house. This week we have a high school friend and her family visiting, then my mother-in-law staying with us for a week, and Brad's uncles stopping by as well. Then two weeks from now I have six girlfriends from high school staying for the weekend. 

We stepped up the house decorating/projects the past week or so trying to get ready for hosting everyone. It has been really fun putting the house together and has very successfully gotten my mind off of cancer. I'm thinking about it way less than I was before. It is so nice to be doing "normal person" things like going to TJMaxx Homegoods and picking out paint colors at Lowes. 

Overall, I've been feeling really good physically after the second round of Taxol (no Carboplatin last time). I don't have any neuropathy symptoms yet which is fantastic. My energy levels are very high and some days I don't even take a nap. Mentally I'm staying positive and am generally very happy throughout the day. I never feel bored and my days pass by much too quickly. David is sleeping and eating well. He is ridiculously easy to take care of. Noah is a ton of fun right now and it's really fun starting to communicate with him through words. I'm exercising almost every day and walking or running around 10 miles a week. I'm thankful for this time I have to be at home to be with David, rest, and fight this battle. 

Back on Track with Chemo

Thank you to everyone that prayed for me over the weekend for my counts to come back up. Your prayers combined with the Neupogen shots made my ANC come up to 3800 - woohoo! We are back in the range of a healthy person. 

Click on the picture to enlarge

The Neulasta shot I had taken previously to help with my white counts really did me in the days following the shot with bone/muscle pain. It always felt like I was hit by a truck. I spent every day after the shot in bed on serious pain meds. The new daily shot at home, Neupogen, has given me very little side effects and I've felt much better on it. I'm pretty stoked about that. Hope that continues!

I slept pretty much the whole time at chemo today. It was lovely. They give you Benadryl to help decrease the risk of an allergic reaction to the chemo and it knocks me out. I came home around lunchtime and then slept until 5pm. Thanks Mom for pulling a "12 hour shift" today helping out. 

During the first round of Taxol, the chemo nurses had me stick my hands and feet in bags of ice. It was super duper painful. The idea is that it decreases the blood flow and theoretically decreases the most talked about symptom of Taxol - nueropathy - pain, numbness, and tingling in fingers and toes. This round the nurses said that there had been studies that disproved this. So you ask a sleeping Ashleigh if she wants to wake up to go through an hour of pain and there is data that says it won't work...you can probably guess what my answer was. I'm going to need to do a little homework before the next round and see what studies have been done. I really don't want permanent neuropathy for the rest of my life. I can't imagine trying to type on a keyboard (for my job when I return), run, and take care of little ones, without feeling or worse, pain, in my hands and feet.

Tonight after my day of sleeping I went to the Beacon of Hope cancer support group I previously mentioned here. I really enjoyed it again. Everyone there is so positive and, just like the name would indicate, full of hope! Tonight a family came and spoke about a non-profit they started that helps families financially going through tough times. The gentleman that spoke talked about how he had lung cancer and was given 6 months to live. Then one day he went in for a scan and all the cancer was gone. This was 7 years ago. Stuff like that happens- so crazy. It would be so awesome to have a miracle like that in my life. I would totally be game!

Lots to be thankful for tonight. I'm really happy to have chemo back in my bloodstream again. Love me some chemo! I'm so happy that my immune system is doing so well and responded well to the Neupogen shots. I'm so thankful for my Mom being available to watch David and take me to and from chemo today. And I'm thankful for the encouragement I received from the Beacon of Hope meeting. Now if we can just get these pesky tumors and swollen lymph nodes to melt away in the next 11 weeks that would be wonderful!

I'll leave you with a video of me and the boys rocking on the front porch last night. The weather is finally getting a little cooler here in Texas and it feels great being outside in the evenings.

Chemo Delay

Wednesday I went in for my second round of Taxol and my white blood cell counts (immune system, ability to fight infection) was too low (at 400, needs to be above 1500 ideally). So they sent me home and told me to come try again next Monday.  Booooo. 

I love chemo days because I love having something in my blood stream fighting the cancer! (And because I get to chill for 3-4 hours and watch HGTV with a warm blanket, and because there are no kids crying for milk, and because they get me cold ginger ales and snacks. Okay, let's be honest, there are lots of reasons I love chemo days.) This is the first time we've had to delay chemo because of my blood counts. I wish there was something I could do, like eat a certain food or exercise more, that would help boost my immune system.  The doctors keep telling me the only thing I can do is not get sick. So I went to Walmart and Noah's daycare yesterday...both of those activities should help me not get sick, right?  I promise I had my mask on the whole time!

David and me at walmart, bonus points if you can spot the baby

In an effort to get my counts to rebound faster I have to do steroid shots again. Previously I was able to take two weeks' worth of steroids at one time in a single shot the day after chemo.  However, since I'm now getting weekly chemo, I have to switch to smaller daily injections of the steroids so that the steroids won't interact with the chemo.  So guess what came in the mail today- an overnighted package of 'riods! and a ton of needles- eeeek!

Did I mention I hate needles and am a total baby about them?

On Wednesday when we realized I wouldn't be getting chemo, the nurse trained me on how to inject myself with the drugs. There were about a million steps. In hindsight, I probably should have video taped her. On the plus side, I'll be a total pro if I ever get diabetes or decide to take up meth.

On Wednesday afternoon/Thursday morning there was a big debacle about getting the prescription filled. Walgreen's wanted $3000 for five tiny doses...I should do the math on what that translates into per ounce. Then, once I convinced my insurance it was a life or death situation and that I had two little babies they did an override. Then, Thursday morning I went to pick it up  and Walgreen's said they didn't even carry the drugs- come on. 

Due to that drug debacle I had to go back to the clinic to get Thursday's dose, but it all ended up working out. I attempted to do the injection on my own while the nurse told me when I had missed a step. It probably is for the best that I had to come in so I could get a second lesson. Today the insurance/drug company overnighted the drugs to me so now I have steroids for the whole month - weeee!

One upside to chemo being delayed is that I have felt really good this week and got an extra couple days of not being totally wiped out. My life is really pretty great right now. Since Brad does the overnight feeding with David, I get a full 7-8 hours of sleep straight. I get up with David and Noah in the mornings and get them fed/play with them. It is really fun.

Breakfast with the boys. Note the million cherrios on the ground.

We go on family walks almost every night. Walks at night are especially good if I haven't felt super hot during the day and have taken one of my epic 5-6 hour naps (is it a nap if you sleep for 6 hours? or is it just another night's sleep, but during the day?). I always feel so good after an evening walk - it's just nice to get out of the house and spend time as a family. The doctors/nurses always get so excited when I tell them I exercise 5-6 days a week. I guess that is a good thing to do even with chemo so I'm going to keep it up! 

I try to run a few days a week in the morning with Noah. Noah is a good running partner! I'm still working on getting my mileage/speed up. Right now we are doing short and slow runs. I figure, at least I'm getting out there!

Noah and me out for a morning run!

Delaying chemo has also allowed me some time/energy for projects around the house. One of my friends suggested I focus some energy on decorating to take my mind off of things. Great suggestion! It has been super fun getting the house put together. I even started painting yesterday.

Do you like my blue wall?

Life is pretty great right now. If it wasn't for the life-threatening cancer, I wouldn't have a thing to complain about!

If you are praying for our family, please pray that my counts would rebound very, very quickly and be crazy high by Monday so we can get back on schedule with the chemo. I need this chemo to work like whoa so we can have a pathological complete response, clear margins, and no evidence of disease with no distant recurrence ever. That would be ah-mazing!

David's Newborn Photos

When Noah was born we splurged on newborn photos (looking back at these, I really miss my hair!) and didn't regret the purchase one bit! We booked a newborn photographer months ago for David, not knowing how special the session would end up being. 

The day of the session we were a hot mess (when are we not a hot mess, really?). We opted for an in-home session vs. the studio thinking Noah might fare better being in his own element. You are supposed to do a list of things before the photographer arrives to prep for the session (like feed your baby, for instance). When the poor photographer rang the doorbell none of us were dressed, the baby was crying for food, the house looked like a tornado had just blown through, Noah was having a tantrum, and I didn't have any make up on. I opened the door (bald) and said, you know how you might picture life with two kids under 18 months and a mom with cancer might look like? Yeah, this is us right now. Thankfully the photographer was super patient and gave us a few minutes to get clothed/fed/ready.

Despite all the craziness, we did have a handful of photos turn out well. It is ridiculously hard to get a photo of all four of us right now but I think we had one turn out okay.

David is asking - "What crazy family have I just entered into??"

This is my favorite one from the session. I had originally requested this one thinking with my hair curled it might be pretty to have my hair all laid out nicely. The photographer remembered the request and suggested we still do it but with my scarf. I'm so glad we did. I think it really captures the deep, unexplainable peace that our family has right now in the midst of cancer+newborn.

These pictures really capture Noah's personality. He is a little entertainer and just lights up the room!

I love this picture of Brad with Noah. He is so fabulous with him. Noah adores his dad. Anything dad does he wants to do.



This is where my newborn photographer really shines. If we had done an in-studio session we would have had a lot more pictures of David in the cute curled up positions.


Love the detail pictures. Couldn't you just eat those little toes up??




Then one final outtake picture. Gotta love Noah's "surprise face".


We will cherish these pictures that capture this crazy and exciting time in our lives. 

New York City

One of my girlfriends from business school got married this past weekend in New York City. Brad and I really wanted to go but figured we wouldn’t be able to make it with David due only 2 weeks before the big day. The combination of David coming 3 weeks early and me not breastfeeding, made it technically possible to leave the kids for a weekend and to attend. Folks moved heaven and earth for us to go this weekend and we had an incredible time. It was wonderful reconnecting with Brad, sleeping(!!!), seeing good friends, and getting to be a part of our friends’ fabulous wedding day!

Friday

We left early Friday morning after only a few hours sleep the night before. My dad slept over Thursday night to start taking care of David at 5:30am when we left. My dad did all the overnight feedings with David and early morning wake-ups with Noah. My dad is a saint and I owe him BIG time! 

Another good friend from school paid for our hotel room for the weekend at the Westin Grand Central. It was fabulous! We had a view of the empire state building from the 23^rd floor and a spacious room (which is hard to come by in NYC!). The lady at check-in even gave us vouchers for free breakfast. Not having to pay for two nights in Manhattan sorta of tipped the scales on us being able to afford flying up for the weekend. Thank you Vanessa for the very generous gift!!

After checking in, we walked around the city and grabbed lunch at a delicious little Cambodian eatery. I had a tiger coconut shrimp sandwich and chipotle corn. I miss unique, character-filled, foodie places like this. This does not exist in Allen!

num, num, num

Walgreen’s Latisha – Pow!

My new lashes and new friend Latisha

We went to a drug store to pick up a couple things and, when we were checking out, the lady behind the counter asked if it was my first time putting on fake eyelashes because the kind I got were “all wrong”. Her lashes were about a foot long so I had a feeling she thought I should go a little more dramatic. She walked me back to the lashes area and proceeded to up the drama with a much bolder choice. She offered to put them on me and since I didn’t know what I was doing I agreed (not before making her Purell her hands, of course). Her catch phrase was “Pow!” anytime she stepped back and admired her work. So there I was in NYC, in Walgreens, with Latisha (who turned out to be the store manager), applying long, fake eyelashes. It was just too funny.

On our way back to the hotel we ran into some other friends from school that we didn’t know would be at the wedding. It was crazy running into someone you know in big ol’ NYC! They brought their son who is Noah’s age and it made me miss Noah so much! In fact, any time I saw a picture of a baby, or saw a kid, I was super homesick for my kids. Brad had to keep reminding that we would be home in just a day or two and to enjoy this rare break without them. It didn’t really stop me from talking to every kid I saw all weekend…that’s normal right?

Rehearsal Dinner

selfie in the cab

That night we got to go to the rehearsal dinner at a posh restaurant/club called Lavo. It was good catching up with more folks from school. It was a bit strange fitting my new world of cancer in with my old friends from Boston. Many people said they had been keeping up with the blog, when I didn't even realize they knew about the cancer. They were all so sweet about it. The dinner was a par-tay with a DJ and dancing. At one point while on the dance floor the DJ played a Ke$ha song with the lyrics “let’s make the most of the night like we’re gonna die young, we’re gonna die young, we’re gonna die young”…funny how even pop songs hit you differently after getting cancer at 29…

Saturday

Friday night Brad and I slept for…drum roll…ELEVEN HOURS STRAIGHT!!! STRAIGHT!! ELEVEN!!! I haven’t slept that well in months! I felt like a new woman- like I could conquer the world! Saturday I must have told Brad how happy I was about a million times. Amazing what a good night’s rest can do for you!

9-11 Memorial

After lazily rolling out of bed, we made our way downtown to the new 9-11 Memorial. It was very chilling seeing the 3,000 names of men and women that lost their lives on the planes, towers, and as first responders.

Lion King

We decided last minute to see a matinee performance of the Lion King on Broadway. What a wonderful decision that was! Seriously it is SUCH a good show. The costumes and backdrops/props were pure genius. I’d love to meet the brains behind such creativity. The voices, instruments, and effects were all so beautiful. No wonder the show has won so many awards. I highly recommend it if you are ever in NYC!

Stephanie & Andre’s Wedding

We quickly went back to the hotel after the show and got ready for the big night. The wedding was black tie so Brad had an excuse to wear his tux and since I’m one month postpartum and nothing fits right now, I had an excuse to rent a designer dress (yay!). The wedding was next to Central Park so we got to snap a few pics before heading over to the event.

Brad and I feel fortunate to have attended so many wonderful friends’ weddings. They have all been so special in their own unique ways. This one however, takes the cake for being the most impressive event that we’ve ever been to. This is not surprising knowing who planned it though. The bride, Stephanie, was known for planning events/performances at school. She single-handedly pulled off the end of the year annual talent show (a HUGE production with a budget of 100K+) and planned the annual Spring Gala where our school rented one of the Newport Mansions and had 400+ people attending (who knows what the budget for that was!). She hosted a baby shower for me during school and had favors for all the guests that included chapstick with my name on it. So you get the idea that she is really good at this type of thing?

First of all, the wedding was at the Metropolitan Club in Manhattan, which is gorgeous. Every wall/ceiling/column/staircase was a work of art. We were greeted with a cool glass of sparkling water and a harp/violin/flute/clarinet orchestra as we entered into a lounge. After seeing a few more friends that came in that day, we were invited into an impressive room with the most beautiful hoopa you’ve ever seen. Check out those roses!

The ceremony was beautiful and Stephanie made coming down these amazing stairs look effortless. It was fun getting to yell “mazltoff!” after the groom, Andre, broke the glass. After the ceremony, we moved into another room for the cocktail hour. They had a raw bar for the ages- jumbo cocktail shrimp (that I had an un-classy amount of), de-clawed crab, scallops, and oysters that were shucked while you wait. I told Stephanie that the decorations, food, music (live-Brazilian band) were all fabulous, she told me just to wait until we saw upstairs (spoiler: she was right).

Apparently her dad (Mexican) was upset that they were having Brazilian (her mom’s from Brazil) music for the cocktail hour so he decided to hire a Mariachi band for the guests as we moved from the cocktail hour to the ballroom for dinner. Ah-mazing!

Outside the ballroom there were hundreds of hand-crafted chocolate truffles that looked like real flowers. There was a flower arrangement that spanned the length of the table- crazy! The cake had fondant flowers that I actually thought were real flowers until half way through the evening when I realized they were sugar.

The ballroom was stunning. The arrangements were 10 feet tall and had the most exotic and unique flowers. The dozens of orchid stems in each arrangement were the tamest part! The band was in-cred-ible. There were 6 singers that each could have been their own solo act. They had a horn section and killer guitarist. Often times I would stop dancing and just stop and watch them. They were SO entertaining! They could play current top 40 hits, Jewish songs, Latin salsa/samba, old classics, even rap! They even changed outfits half way through the night.

Dinner was delicious with caviar, smoked salmon, filet mignon, Chilean sea bass, frizzled leeks, etc. For dessert they had warm lava cake with ice cream, in addition to the wedding cake, and chocolates. Delicious!

Stephanie looked amazing the whole night. Again, not surprising since she is probably one of the prettiest people I know to begin with on a normal day. She had a fairytale ball gown on for the wedding and a flowing gown on for the reception.

The whole night was so magical. We had a blast and stayed until the very end at 1am. We were able to hang out with bride and groom a lot more than we typically get to at a wedding. They made us feel so special and thanked us multiple times for making it to the wedding. They are an awesome couple and I felt so honored to be there!

Sunday

Sunday we definitely took it easy. We went to a late brunch with a friend at a French bakery. It was so sad to say goodbye to her. I wish we lived in the same city as her and her husband. Such good people!

Brooklyn Bridge

We had a little time to kill before our flight home so we took the subway to walk the Brooklyn Bridge and get a few photos.

We are so thankful to my parents for watching both tots all weekend. It is pretty brutal waking up in the middle of the night to care for your own newborn, much less someone else’s! Noah is a ton of fun right now but he goes non-stop and pretty exhausting. Caring for both for three days in a row was a tall order, so thank you Mom and Dad!

On Thursday night, I wondered if we were crazy trying to take on a 3-day trip with everything we have going on right now, but in the end I’m so glad we ended up going. It was fabulous getting to see and be a part of our friend’s wedding day, catch-up with friends I haven’t seen since graduation a year ago, and spend some much needed quality one-on-one time with Brad.

One of the best things about the trip was truly getting my mind off of cancer for the first time since I was diagnosed. I went whole hours at a time not thinking about it. Spending time with Brad, having fun, and getting good night’s rest are very rare these days and I appreciated all of those things during our time in NYC!

MD Anderson mid-Chemo Follow-up

Thank you to everyone that prayed for us during our trip this week to MDA. We had a super productive, albeit exhausting, trip. We met with a slue of doctors and now we feel like we have a peace about what to do next.

6AM – Rise and shine at the Dean house. Allison got up even earlier than we did to get our hot breakfast together before we left. So kind!

7:30AM – Sonogram to see how my resident tumors are doing. The radiologist said that everything is moving in the right direction (shrinking). By our calculations based on the measurements they gave for before and after treatment so far, it looks like everything came down to a quarter of what it was before (by volume). While this is good, and much better than everything growing over the last eight weeks, it isn’t as good as it might need to be to have a complete response (all cancer gone before surgery). 

Brad getting some much needed shut eye in the waiting room. 

8:30AM – Blood work. Man those lab techs are good down in Houston! They take blood like its nobody’s business. My best two sticks have been my two times down to MDA. You barely even notice they took blood from you- they are good!     

9AM – Everything went way faster this visit to MDA so we got a break before our next appointment for some much needed coffee. A couple ladies I was VERY excited to meet with happened to get out of a meeting early and came and found me in the cafe.

The first one was Terry Arnold. Brad calls her the “Den Mother of IBC”. She had my same diagnosis 7 years ago (triple negative, IBC, took 4 months to diagnose). She was treated at MDA, was "cured", and has been crusading for IBC ever since. In 2011, Susan G. Komen and American Cancer Society didn’t even list IBC on their websites. It took two years of her writing and calling for them to finally post some basic information. I told her she saved my life because that is where I got the information to diagnose myself and get treatment in record IBC-time. Then, seeing how little funding goes to IBC research, she set up her own non-profit where all the money goes to research. They have funded 3 projects in the short time her charity has been around. She also has connected women from all over the world who have the disease. She created this google map and a Facebook group with over 500 members. Even though the disease is rare, we are not alone!

The second lady was Angela, a post-doc with MDA focusing on (drumroll…) IBC and triple negative breast cancer! I want more Angelas in the world! She is a wealth of knowledge. I want to download her brain into mine. She is not only a fantastic resource - she is also very giving of her time in being willing to answer questions for everyone on the Facebook group. 

I could have talked with these ladies for another six hours on Tuesday. I hope I get to spend more time with them on future visits.

10:30AM – Met with the oncologist. Dr. Valero is very formal compared to my oncologist at UT Southwestern. We spent a lot of time talking but in the end he had the same conclusion my oncologist in Dallas had come to weeks ago. He said if my cancer had been completely melted away with the AC (the first cocktail of chemo), we would only need to do the Taxol. But since I still have lots o’ cancer, we should add in the Carboplatin. So that is what we are doing – twelve weekly rounds of Taxol with Carboplatin every third week (so four total doses of it).

I asked him if it was still possible for me to achieve a complete response and he was very indirect by saying "that is why we are adding the Carboplatin in, to try and achieve a complete response". I think I heard him thinking “No” but saying it in a way that it could sound like a “maybe”. Yikes.

12:30PM – We went directly to the surgeon appointment. The surgeon had a great bedside manner. We are leaning towards doing surgery down in Houston. If we can work out the logistics I think we are going to try for it. With IBC you have to do a modified radical mastectomy, which is code for they take the whole breast, the lymph nodes in the armpit and as much skin as possible but leave the muscle behind. I personally want a double (both breasts) but there is elevated risk with a more drastic surgery, so we haven't made that call yet. Is it bad that part of the reason I want to have a double is so I can go running without wearing a million sports bras?

2:30PM – We spent a super long time with the surgeon, asking a million questions, so we were actually late for our radiation-oncologist appointment. This was the first time we met with anyone involved with the radiation portion of my treatment since it has always seemed so far away. It was good to get the scoop on what it will look like. I will have 44 treatments over 4 ½ weeks, twice a day, M-F. We are really hoping we can go to Houston for these. I thought that radiation was like chemo and you just decided on the doses and just had to execute on it. Apparently it is more like surgery where it matters who is doing it and how they specially develop a treatment plan. Obviously there are even more logistics to figure out if we decide to move to Houston for over a month, but if it improves the outcome even slightly, I think it is worth it.

4:30PM – Totally and completely wiped out, we got on the road and back to Dallas. We picked up the kids from one of the the nicest couples in our church who watched the boys while we were away. Seriously, cannot thank them enough for doing overnight feedings with David and keeping up with high-energy Noah.

As with every other step in this journey, God has made each decision almost trivial because the answer has been so clear. The type of chemo to do next was obvious, whether to do surgery and/or radiation in Houston or Dallas seems obvious assuming we can work out logistics.

I’m so thankful for the many, many people that are working so tirelessly for me to be cured: I feel incredibly supported and loved by our friends and family who make each step possible, and I know I am getting the best possible cancer care literally in the world. 

Praises + Prayers (9/1)

Praises

+ Feeling great physically and mentally this week. I have started back running which feels fantastic (slow, but fantastic). I have connected with many IBC survivors over the past week (via facebook) and it has been encouraging to see that there can be life after IBC. Even with the tumors growing again, and having to wait an extra couple days for chemo this week, I've somehow been able to not worry about it. I know we are doing everything in our power to fix this situation, and the rest is up to God. Worrying doesn't help, if anything it hurts, so I've been pretty chill about it this weekend- praise God!

+ As I mentioned in a previous post, I had a brain MRI last week due to some brain mets symptoms that I was paranoid about and it came back negative - huge praise! Now every time I have a little headache or it seems my vision is changing slightly, I can relax knowing there isn't cancer in my brain- woohoo!

+ We traveled to NYC last weekend and rode in planes, subways, and taxis and I miraculously did not get sick this week. My immune system is crazy low so not getting sick is really amazing!

Prayers

+ We are going to MD Anderson in Houston this week. Prayers for safe travels and a productive time with the doctors there. I will have another sonogram to see if we've made progress or not with the first phase of chemo. I am meeting with an oncologist (same as before, Dr. Valero), a breast surgeon, and a radiology-oncologist (the one that does the radiation at the end). Pray that God would make it clear to us whether to do surgery and/or radiation in Dallas or Houston. There are some obvious logistical challenges to the MD Anderson options so we need to understand if there would be a benefit to my outcomes if we opted to go with MDA- pray that we would have wisdom to discern how best to proceed.

+ Chemo this week is scheduled for Wednesday, two days later than my normal 2 week cycle. Pray that Dr. Valero will have wisdom on what chemo drugs should be used for the second phase. Please pray that my counts will be up by Wednesday to actually be able to do chemo. Last Friday they were at an all-time low of 400 (before starting chemo they were ~9000, below 1000 you are neutropenic, the lowest I've ever been is 700). Pray that my body would tolerate the new kinds of chemo as well as it has for the chemo I just finished. That my energy would stay high and my symptoms would be minimal/non-existent. The kids are staying with a friend's mom from church so pray that they would be amazing for her and that she would be super blessed for volunteering to take the kids overnight- she is so kind!

Click on the picture to enlarge

+ As always, prayers that the next phase of chemo would be extremely effective resulting in a pathological complete response at the end of phase 2, for clear margins after surgery, and the big one, to not have a distant recurrence (metastases). Prayers that I would have No Evidence of Disease (NED) and stay that way.