Sunday, October 26, 2014

So what's next?

The past couple of weeks I've been getting a lot of questions around the next steps and timeline of my treatment. So I made a process flow chart and a gantt chart to illustrate what's next. (That's normal, right?) 
Click on the chart to enlarge
My chemo started with two drugs that I had four rounds of in July and August. I'm currently half way through my second phase of chemo with another set of two drugs. If I have no delays, I would get my last treatment December 1st. That's six more weekly rounds of chemo. 

I need 4ish weeks to recover from the chemo before surgery. They want my platelets and WBCs nice and high before such a significant operation. This puts us right around Christmas/the first of the year for surgery.

Surgery will take place in Houston at MD Anderson. I will be getting a modified-radical double mastectomy- meaning that they will remove both breasts, a whole bunch of lymph nodes in my armpit, and a whole lot of skin. The modified part means they leave muscle behind. I will only stay in the hospital for one night but will stay in Houston for a few nights afterwards just to make sure my recovery begins smoothly. 

I will need 4ish weeks to recover from surgery before we start radiation. Radiation will also take place in Houston at MD Anderson. The plan is to have 44 rounds, twice daily, each weekday. That will take 5ish weeks to complete. 

All the treatments should wrap up late spring/early summer. This is assuming everything goes perfectly of course. There are a couple deviant paths I'm currently aware of. I've outlined those in the flow chart below:
Click to enlarge
The first hurdle is get through the trimodal treatment plan - chemo, surgery, radiation. Hopefully at the end of all of that I'm cancer free. Unfortunately though, I will not be home free even after all the treatments. The big question is did the treatments kill EVERY SINGLE cancerous cell? Because if not, it will re-assert itself when I don't have chemo going thru my bloodstream. If you remember this curve:
Survival curve
The curve doesn't really start dropping until after a year- when your treatments have stopped and the cancer has a chance to come back. So step one is get thru treatments and have "No Evidence of Disease". Then step two is wait to see if it comes back in the next five years. I think that might be the hardest part - waiting to see if it comes back. 

I'm going to take this one step at a time and keep giving this all over to God. I'm also going to fight this crazy hard and will keep planning on achieving a 5-year No Evidence of Disease until we have any evidence to the contrary.  So our target milestone is ~July of 2019 - right around David's 5th Birthday.  We're already planning a HUGE party to celebrate, so save the date - you're all invited.

Friday, October 24, 2014

Andy’s Wedding & Week at the Beach

After the girl’s weekend it was time for my brother’s wedding in the Outer Banks of North Carolina! His to-be in-laws rented a house on the beach and invited our family to come stay for the week prior to the wedding. We had a wonderful time relaxing and celebrating with the two families. Getting there and back turned out to be quite the adventure- especially by myself the day after chemo!
so bald :)

Getting to NC

My parents took Noah to North Carolina on Sunday afternoon and Brad left for San Francisco for a work trip early Monday morning. That left David and me to fend for ourselves getting to chemo on Monday and to the airport Tuesday.

Enter “Angel” Janice.

Janice is our Bible Fellowship Group teacher that we met at the beginning of the summer. I asked her to take me to chemo and watch David Monday morning. I’m ridiculously thankful that I was able to get chemo on Monday and didn’t have to push my flight out to later that week. My WBCs and platelets were surprisingly high considering I had the Carbo+Taxol just one week earlier. All the nurses at chemo were so happy for me, knowing that I wanted to go on my trip the next day.

When Janice dropped me off back at home she told me to go in and take a nap while she took David back to her house.  I was exhausted so I didn't put up much of a fight. She came back over around 9pm and brought an overnight bag with her. She stayed up with me until midnight helping me pack, do dishes, laundry, take trash to the street, etc. to get the house ready to leave for a week. THEN she woke up at 3:45AM to get me to the airport for a 6AM flight out. Ah-mazing, right?

I am so thankful for the support of our church, family, and friends that do heroic things like this for us all the time. I didn’t ask her to do anything but drive me to/from chemo and then she just started doing the rest on her own. I don’t know how David and I would have been able to get to the airport for such an early flight on our own. Thank you so much Janice!!

So Tuesday had an early start but we made it to the airport with all of our bags and baby gear in tow. My parents suggested I request wheelchair assistance so once we checked in someone came and “assisted me”. I wonder if I can start requesting "assistance" even after I’m off chemo but flying alone with kids. It was kind of amazing. My helper walked beside me with my luggage and helped me through security to my gate. What mom flying alone with kids wouldn’t want a couple extra hands through that process??

We had a layover in Philly. Someone was waiting for me with a wheelchair once I exited the plane. Since I had the stroller/car seat someone had to push the wheelchair and someone had to push the stroller/car seat too. The pilot volunteered to get us up the ramp. We were quite the parade. 
Even the pilot helped me out
We got to ride in one of those carts that are always beeping behind you in the airport trying to communicate for you to get out of the way. It was pretty awesome. Again, can I request one of these even when it’s not the day after chemo with an infant?

beep, beep cart

My dad came to the airport in Norfolk, VA to pick us up (1.5 hours from the beach house). Thanks Dad! We went out to the 18-mile Chesapeake Bay Bridge-Tunnel while we waited for my Grandma’s flight to arrive. Check out this cool Navy ship we saw. My Navy Jag friend said it’s probably a supply ship.
naval ship

We got to the house around 8pm and I was pretty exhausted. My folks took the baby overnight so I could get a full night’s rest – thanks mom and dad! It was wonderful being reunited with Noah after three days of being apart. I think my parents were pretty excited to have me there too to help with Noah. J

Week at the Beach
Our view
The house that the Dobson’s rented was pretty stinkin’ amazing. It was brand new and slept 50 with 15(!!) master bedrooms. It had its own heated private pool and beach access. The kitchen had three dishwashers, two sinks, two refrigerators…you get the idea. The dining room had two giant tables with seating for 30.
dining/living room

They had a nursery room with a crib in it that was absolutely perfect for Noah. He had zero transition time to the new space and never had trouble with naps or sleeping- yay! Don't ask me how, but we were somehow assigned the owner’s suite next to the nursery to stay in. It was the only room in the house that overlooked the ocean and had a huge bathroom including a tub (which was awesome for bathing the kids). Thank you Mr. and Mrs. Dobson!!

We had a terrific week. Everyone at the house was super helpful with entertaining Noah and holding David. There were a TON of redheads. I felt like I was family with everyone. It was the first time I've ever been to a beach when everyone else was just as worried about getting burned as I was!

Speaking of getting sun…I had to be super duper careful about sun exposure. I’m normally pretty careful because of my red hair, blue eyes, and neon-white skin, but now the chemo makes me even more sensitive to UV rays. I got sun poisoning the other day just from running a few errands without sunscreen on! I pretty much always had a “sun shirt” on- even in the pool and ocean. I looked really cool.

I know, I'm SO cool
We were able to get in the ocean despite it being October in North Carolina. It felt so good floating in the water or catching a wave on a boogie board. Noah liked the ocean until Brad got knocked over by a wave while holding Noah. Thank goodness he kept a hold of him!! On the other hand, Noah LOVED the pool. By the end of the week he was so confident in the water that he would just jump off the side of the pool into the water - whether one of us was waiting to catch him or not!  We had to make sure someone was always waiting for him in the pool since he definitely sinks!

The Wedding
Can't wait to see the photographer's version of this pic
My brother, Andy, met his now-wife, Christi, when she was in Jacksonville for an internship and needed a place to stay. She became the fourth roommate in Andy’s apartment. She was tall, beautiful, a strong Christian, and in school to be a physical therapist like Andy. They dated while they were both in grad school, much of which was long distance. They waited to get married until Andy had graduated and started his first job as a PT in Greenville, SC.
People from the house next door watched the wedding.

The wedding was stunning down on the beach. The weather could not have been more perfect for it. During the ceremony Noah kept exclaiming, "OH nooooo!" Poor Brad had to sing/whisper in Noah's ear over and over, "The mamas on the bus go shh, shh, shh, shh, shh, shh, shh, shh, shh, allll over town" to keep Noah quiet. Finally at one point during the ceremony Brad and Noah took a walk down the beach. It turns out two year olds and being quiet/sitting still don't really go together.

Christi’s family did the whole reception essentially by themselves. Christi’s mom, aunt, and grandma cooked all week while the uncles and cousins set up decorations, tables, and chairs. The reception around the pool looked amazing. Christi had a photo booth set up and hired a DJ and had a dance floor put in. The whole night was a blast.

Noah turned out to be quite the little dancer. At home he loves music and dancing. He also loves being the center of attention. You combine those two things and he was certainly in his element. He was in the center of the dance floor entertaining everyone the whole night. He would move his little feet, shake his hips and raise his arms. It was just too funny. We kept trying to take him off thinking he was done or getting tired, but he kept running back to the dance floor for more. If he is like this at 20 months, what are we going to do with him as a 4 year old??
Noah is a dancing fool!
All of my aunts and uncles came for the wedding – from Hawaii to Florida to Vermont. It was neat having my grandma’s four kids all in one place.

All of my Aunts and Uncles!

Getting Home

It was so sad leaving our little paradise but it was made better by knowing we were going to meet up with friends in Norfolk. Our friends David and Caitlin drove in from Richmond to see us for the afternoon (thanks for making the drive guys!).
David and David's namesake in matching fleece vests. :-)
One last lunch with both of the grandparents
Our flight out ended up being delayed, so much so that we missed our connection in Charlotte. Our connecting flight was of course at the other end of the airport.

I ran with the stroller and our bags piled on top through the airport to try and hold the plane. Brad couldn’t run with David strapped to him though. I got there and could see the plane.
the plane was RIGHT there
The attendant at the gate called the pilot for me but said since we weren’t both there they were going to have to close the door. Daaannnggg it!

It ended up not being so bad. They gave us hotel vouchers for a brand new Crown Plaza. It was almost like we got to extend our vacation for an extra night. Thank goodness Noah went home with my parents and they were planning on keeping him overnight anyway. I cannot imagine what being delayed and staying someplace overnight would have been like with a tired toddler melting down.  David, however, couldn't have cared less.

The next day our flight out had to be routed an extra 350 miles due to weather and then had to circle DFW for an extra hour because of traffic on runways. I ended up being two hours late for chemo but thankfully they still took me and gave me chemo! Yay chemo!

Photos from the trip

Noah and Dad being cute
me and my bro
Great-grandma and Noah
The whole family

Sunday, October 19, 2014

Medical bills

I'm really cheap and hate spending money. For instance, last weekend I finally threw away my only pair of sandals that I have had for four years and were starting to "talk". AKA the sole had split apart and flopped when I flipped. Today at Michael's I was buying something that was $4 and I made sure I had a 40% coupon before purchasing it. Even though Brad likes to go to lunch each day, I eat at home as a way to save money. You get the idea.

bills, bills, bills
So it turns out when you have cancer, you get a lot of medical bills- 158 of them (in just the past three months) to be exact. This is (thankfully) my first time having a major medical condition and therefore my first time having a mountain of medical bills. It is very painful to be careful with one or two dollars at Micheal's but then have a $360 bill for a doctor's visit that simply has to be paid. I'd so much rather split that $360 into a million trips to TJ Maxx Home Goods or three stock-up trips to Wal-mart.

My insurance provider (soooo thankful for insurance!) allows me to download all my claims so I can analyze them (I barely have any data to analyze these days, gotta do something to keep my brain busy). I was able to compare how much the total cost for the treatments, surgeries, procedures have been versus what I've actually paid. It turns out I've only had to pay 2.92% of the total cost! Amazing! So instead of being focused on how much everything has cost me out of pocket (ouch!), I'm trying to focus on what a good deal I'm getting. 97% off! Whatadeal. haha

The craziest bill has to be for my shots that I take to help boost my immune system. It costs $10,000 for 20 tiny viles. Thankyouverymuch Amgen!
$500 for this!
I'm so thankful for work keeping me employed through short term disability and having insurance. I don't know how we would have been able to pay for everything without it! Everyone drink more Dr Pepper and Snapple!

[I had Bills, Bills, Bills in my head the whole time I was paying all of these bills. Check out Beyonce circa 1999!]

Friday, October 17, 2014

Intellectual Mafia Reunion

In high school I had a group of girlfriends that was nicknamed the "Intellectual Mafia" by our American History professor. They were all the presidents, captains, and leaders of the school. They also happened to be beautiful and a ton of fun. We studied hard for our AP tests and played hard with weekends spent at the beach. Since high school they have all gone on to be doctors, lawyers, engineers, get the idea. Every one of them have or are currently getting at least one graduate degree. Brad always has to remind me that even though these girls make me feel “normal”, we are not indeed “normal”.

Back in the spring I started planning a surprise birthday for my best friend Sabrina. The idea was all the girls would fly in for a weekend while Sabrina just thought it would be her coming into town. After I got cancer, Sabrina started trying to plan a surprise birthday party for me. Every time I tried to call the other girls and talk to them about a surprise for Sabrina they were surprisingly non-committal and lukewarm about it - turns out they were giving the same reception to Sabrina since no one wanted to ruin anyone's surprise plans. Brad had to finally break it to us that we were both trying to plan each other's surprise party for the same weekend. Many of the girls had already bought tickets for the weekend so we decided to have a 30th birthday party for everyone!

I made everyone gift baskets and picked out a scarf that matched each girls' personality. It was super fun putting these together!

Sabrina came in a day early and painted my entire kitchen/nook. Impressive, right?
Thanks Sabrina!
The weekend was a blast. It is really special to stay in touch with this many girls for over 15 years now. (Two additional girls visited me other weekends this month.) We have gotten together 1-2 times every year since high school. The majority of the weekend was spent hanging out around the house doing a whole lot of nothing. The girls were really helpful with Noah and David, dishes, etc., so it made hosting them a breeze. 
We took lots of walks
Sabrina made us shirts!

The kids
Noah got lots of attention!

David started smiling right in time!
Noah and Dad being cute!

Tuesday, October 14, 2014

Suite HOPE

One of my very favorite things to do is go to the spa. I have told Brad that he can get me spa gift certificates for every birthday and I would be totally content! Since being on chemo, I can't get my nails done due to the risk of infection. I can't get facials because of my skin being sensitive to the chemicals. I can't get my hair done because...well, I don't have any hair.

During the most recent session with my cancer psychologist, he mentioned a non-profit called Suite HOPE (Helping Oncology Patients Esthetically) founded by Makeup Artist Jeanna Doyle. Suite HOPE’s mission is to provide women with the education and support they need to address the changes in their appearance that occur during cancer treatment. Jeanna volunteers her time to help teach cancer patients techniques that can help them feel their best.

I wrote to Jeanna and she offered to come out to my house and do a free makeup session with me. She had just gotten back from NYC where she was flown in on her client’s private jet to do someone’s makeup that would be on the front row for Fashion Week. She also did President Bush and the First Lady’s makeup for the opening of the Presidential Library. What a cool job she has! She does the Suite HOPE non-profit as a way to help cancer patients with the skills that she has been given. How awesome is this lady?

Getting my foundation airbrushed on
Check out that brush collection!!
The main two things she taught me were how to create the illusion of eyebrows and eyelashes since mine are very thin right now. 
Needless to say, it was ridiculously fun getting pampered and having my makeup done. I now apply the techniques she taught me and feel better about losing my eyebrows and eyelashes. The morning of makeup fun helped scratch that spa itch!

Monday, October 13, 2014

Quick Update

Hello blog world! It has been awhile since my last post. I have been busy living life- how fun is that?? I’ve enjoyed a fun couple of weeks and look forward to updating the blog with all we have been up to- Andy's wedding, week at the beach, high school girlfriends coming in town, airport trouble and lessons with a professional makeup artist!

On the cancer front, I was able to get chemo on the Monday before flying to North Carolina for my brother’s wedding. Thank you to everyone that prayed for that! My platelets and WBCs were both super high. They were so high that I asked the doctor to schedule the next chemo a week apart (like it is supposed to be administered). I went into the clinic today straight from the airport and....drum roll....was able to get chemo! Yay! I love me some chemo!!!

My energy this past week was surprisingly high despite getting the extra drug, Carboplatin, the Monday before the trip. The first time I got Taxol and Carboplatin I took 3-5 hour naps every day for a week. The week after this time I only took one nap and only for an hour.

I’m through phase one of chemo and have completed 5 out of 12 rounds of the second phase- but I can still feel tumors in my breast. It makes me wonder if a pCR is still possible with the eight remaining treatments. A while back I asked a researcher at MD Anderson to see if anyone with IBC, triple negative, and a high Ki-67 score ever “made it”. She only had data for women that didn’t have a pCR. The database returned three women with my same diagnosis- none of them made it past two years. As na├»ve as this probably sounds, I still have hope and believe that somehow God is going to heal me. I just honestly don’t see how He is going to do it. Maybe that is the definition of a miracle?

I'll be working on updating the blog more frequently over this next week. I appreciate everyone that has been keeping up with us and are still praying for my heeling. I reallllllly want to beat this! <3

Wednesday, October 1, 2014

Baby Dedication

Last Sunday David was dedicated at church. This is sort of the baptist version of a Catholic baptism. It is a time during the worship service where we dedicate David to the Lord, promise to raise him in a Christian home, and the church commits to help us in teaching David about Jesus.

It was a typical morning for our family, in that we were a hot mess.  First, we totally blew through a practice/meeting the church held the Wednesday before. It was technically on the calendar but it was midday Thursday before I realized we hadn't made it. Then the day of, we were supposed to meet the other parents participating in a room at 10:10am. Brad was teaching our Bible Fellowship Group class the first hour so we were late getting to the nursery area where we needed to pick up Noah and David from their classrooms.

When I went to pick up Noah, he was covered in water that apparently he had pretended to drink and then repeatedly spit out of his mouth. So Noah was soaking wet in his cute little outfit I had dressed him in. Someone tried to stick it in a dryer they had at the church so Noah was running around the church without a shirt on and his pants wet. Brad was still teaching so I was trying to pick up David from his class, wrangle my half-naked Noah, and get to the classroom where everyone was meeting (in heels, no less). Very nice childcare volunteers were helping me and kept asking me if I was okay. This might have looked crazy to them, but I'm totally used to it. My life is a circus!

The families moved from the room in the kids area to behind the stage in the sanctuary. By that point, Brad showed up, Noah's shirt came back (still wet), and we had David in tow. Someone had to wait with us and take us back separately. Then just moments before walking out on stage Noah tripped and face-planted on the floor. He was sobbing and getting snot/tears/slobber all over Brad's suit.

Miraculously, when we walked out Noah held it together and just stared out at the crowd, stunned (for once). He even stayed content with Brad holding him through the whole dedication - that is, until the prayer, at which point he decided he wanted down to go explore the band behind us.  Thankfully Brad was able to hang onto him, and not many folks saw him squirming since everyone in the congregation was praying.

Hallelujah! We got the baby dedicated!