Praises + Prayers (12/17)

Praises
+ I have the best medical team on my case in the world. No one knows better how to treat me than the IBC clinic at MDA and no one cares more deeply for me than my oncologist at UT Southwestern.
+ I have the most loving and emotionally supportive husband in the world. Not only has he stuck by my side when many men might run, he continues to love me so deeply and so well. I feel like I can face anything, including this current trial, with him by my side.
+ I have really amazing kids. David continues to grow and be healthy and seems to get cuter by the day. Noah has the best personality- so sweet, loving, and entertaining. I love both of them more than words can describe.
+ My parents are amazing and live in the same city as me. I'm so thankful to be in the same city as my parents. There is no way we could handle all the treatments logistically without my folks being an extension of us.

Prayers
+ My PET scan would come back negative for metastatic cancer and that I would continue to have a shot (if even ever so slim of one) at being "cured".
+ I would be able to get chemo on Friday and that it would be massively effective against the cancer waging a war on my body.
+ Despite the 0-5% chance I have at surviving now, that I would continue to stay positive, hopeful, and have peace and joy.
+ Brad, my parents, and close friends would be given the grace to handle the bad news and cope well with it. 

MDA Visit - Bad news

This will be a long and heavy post I imagine. This is going to be one of those posts that is actually more for me to use as a processing mechanism than anything else. So here goes...

Sunday

Brad and I drove to MDA Sunday evening after a wonderful weekend with friends visiting and a morning of worship that included Brad and I sharing our testimony with our Sunday School class. It was one of the best weekends I've had in a while; it included me laughing so hard that my abs hurt (or the area that used to be my abs). I woke up not feeling so good Sunday morning (emotionally and physically) but God was so incredibly faithful to give us the strength to still speak in class. At the end of the class, everyone prayed over us. It was very moving.

One of the partners at the company I used to work for offered for us to stay in their guest house while in Houston. It was magnificent. After all the hotels, nice homes, and places around the world we have travelled, I think I can say this was the nicest, most comfortable place we have ever slept. Not having kids to take care of overnight was great for getting a really good night's sleep both evenings in Houston.

Monday

Despite my tumor(s) growing over the past month or so, I had the most wonderful peace driving into MDA on Monday morning. Thank you to everyone that was praying for us. I felt so calm and actually very happy for most of the time spent at MDA.

Monday was surprisingly really fun. I got to see a college friend that works at MDA, a fellow breast cancer friend from Dallas that had appointments the same day as me, and a researcher post-doc friend that always gets me good data. I actually had more meetings on my social calendar than medical appointments, so it was easy to believe that MDA is a totally normal place for hip 20- and 30- somethings to hang out.  The only not-so-fun part was during the ultrasound when I watched the technician find many dark spots and take measurements of a whole lot of them. For my primary tumor she actually had to zoom out to see it. :-(

Monday evening was such a blessing to us- our hostess had made homemade lasagna (made with sausage from an elk her husband had killed!), set the table, and given us wine from her cellar. Her and her husband went out to a concert for evening and gave us a rare night alone to just be together- what a gift!  Brad and I were able to have a wonderful date together and a very genuine, heartfelt conversation about hope, faith, love, trusting our God through this, and considering all possible outcomes.  It felt great to have a long, safe, & honest conversation that acknowledged the chance that I might not make it through this alive.  It helped prepare us for what was coming the next day.

Tuesday

The next morning our lovely hostess got up early and made us breakfast before heading out to a meeting with the CIO of a $10B company. Can I please be her when I grow up??



My appointments weren't until the afternoon so that allowed me some time to pray and prepare my heart for the day's appointments. I again felt a wonderful peace as I prayed that morning. It was a gorgeous day in Houston, so that definitely didn't hurt!

The first person that met with us was the surgeon's Physician's Assistant. She ended up having to be the bearer of very bad news. You probably already have caught that I was diagnosed with essentially the most aggressive form of breast cancer - IBC, triple negative, with 96% of my cancerous cells replicating. So within that group you can have four categories of responses to chemo - 1) All the cancer is gone (that was the pCR we've all been praying for), 2) the cancer decreased somewhat but not fully gone, 3) the cancer stayed the same, or 4) the cancer actually progressed over the course of chemo.

Unfortunately, mine was the fourth option- I have had "significant disease progression" after the six months of chemo. This is the worst thing I could have heard from the doctors yesterday. They believe it may have spread to my other organs and so I have a PET scan tomorrow (Thursday) to investigate that. My breast is full of "satellite tumors", the primary tumor has close to doubled in size, and I have more lymph nodes involved both in my armpit ("axillary") and around my collarbone ("infraclavicular" and "supraclavicular"). The single good piece of news was that there were no "internal mammory" nodes found (under my breastbone).

So now they have started to treat me the same as a metastatic patient: taking surgery off the table for now and putting me on a different combination of chemo drugs with the hope of controlling the growth of the disease. There is a chance that the new chemo drugs could control my cancer better than the ones I've been on and I could move on to surgery later. The problem is that in order to do surgery I would have to be able to be off chemo for 7-8 weeks.  If the cancer is not well controlled (i.e., gone or almost gone) before taking an 8-week break from chemo, then there is a significant chance of it cropping up somewhere else.

Where do we go from here? 

The next steps this week are PET scan Thursday (with results on Friday) and two new (for me) types of chemo starting ~Friday (hopefully). We will try two rounds of chemo over six weeks and see if they work. We will know pretty quickly if it is working since my cancer grows at the speed of light. At the end of six weeks if it looks like its working then I will keep going on it; if not, we switch to something else. (Each time we switch, the probability of it working goes down.)

Brad and I were devastated by this news. My prognosis now is pretty rotten. All I could think about when they were telling me the news was the boys and Brad. I'm afraid that there is now a very good chance that David and Noah will have no memory of me and will grow up without a mother. This thought is extremely hard for me to deal with. I hate thinking about leaving Brad to handle raising two small boys, while working full-time, on his own. I hate thinking about leaving Brad without a life partner to depend on and enjoy life with. I feel badly for my parents potentially losing a child. I feel badly for my close friends - especially some friends who have their own crises they're going through right now.  I wish I was supporting them through their struggles instead of piling on my own. I am so sorry to the people that have been keeping up with the blog that I can't report better news to you, that I can't strengthen your faith through the story of a miraculous healing. I am so, so sorry.

On the way out of the doctor's office I was crying and saying to Brad, "I guess God has chosen not to work a miracle in my life. He hasn't heard our prayers." We got on the elevator to go back to our car and were hugging while I was still crying a little.  One other couple was riding the elevator with us. As we got off the elevator the other couple asked if they could pray with us.  We accepted - we will take all the prayer we can get.  We had no idea who they were, and actually didn't even catch their names.  Then, as the gentleman was praying, he prayed a word-for-word response to the statement I had made not five minutes earlier.  He prayed, "Lord, give this woman the courage and faith to know You are big enough to heal her and that You are a God of miracles, and You can work a miracle in her body.  Thank you that you hear our prayers."  Then, after the prayer, he looked right at me and said, "hold on to your Faith.  God is still in control."  Brad says that if we have ever in our lives been visited by literal, physical angels, it was that moment.  To have complete strangers answer back a faith-affirming response not 5 minutes after I uttered a statement of hopelessness and despair... even if they weren't angels, then it is an amazing testament to fellow members of the corporate Body of Christ being sensitive to the prompting of the Holy Spirit and encouraging us with words straight from the heart of God.

So now I struggle between hoping/praying for a miracle - to still be cured despite immense odds to the contrary - and the scientist/realist in me that knows what my future looks like statistically. I am still hopeful that I am not metastatic (yet) and that the PET scan tomorrow will come back negative. I want the new chemotherapy to work amazingly well, allow me to have no evidence of disease, and go on to surgery. I want to be cured and live a long and wonderful life with my family. I want to host a massive party for David at his 5th birthday. Lord, please allow me these experiences.

My "plan" for now is to take it one day at a time. Each day that I wake up and still have breath in my lungs, I'll ask God to use me for His will and for His glory in that day. Instead of having some grand plan of the perfect treatment and associated response (i.e., that flow chart I built), I will try my best to "go with the flow".  Anyone that knows me, knows this will be incredibly difficult for me. I will keep asking "what's next?" and praying to Jesus that there is still a "next" to try.  God is still good, and He is still in control, even in desperate moments when I don't feel him close by.

So today I woke up and had a pulse. I feel healthy and have no symptoms. Today I will be thankful for those things, and I will be grateful for every single day that God allows me to live.

Hair Update

Let's talk about hair!

New Wig

I was working on getting my wig reimbursed by insurance and needed to get a copy of the receipt. I stopped by the wig shop on the way home from chemo one day and found a super fun wig on the clearance rack. The wig is way more like my old hair and even has a little red in it. I feel much more like myself when I'm in it.

Hair Growing Back

Look how funky I am

My hair is starting to really grow back in. I can't imagine how much it is going to grow once I stop the chemo. It looks about like my old color and texture so far, which I'm really happy about. I even got complemented on my very avaunt-guarde "haircut" the other day at Hobby Lobby. It will be awhile until I can go get a real haircut and style but in the meantime it is fun having something on my head.

I'm trying not to get too attached to it in case I have to go on more chemo before or after surgery (a distinct possibility). I'll be bummed to lose it again if that happens but happy that we still have options to try.

Beautiful Lengths
Before all my hair fell out, I got my hair chopped off to give to Pantene's Beautiful Lengths. I've given twice before to Locks of Love but those wigs are for children's wigs. Pantene's goes to adults too. It has taken a bunch of months but I finally got that in the mail. Yay for real hair wigs for folks.

Christmas Party

Brad and I offered to host our church group's Christmas party this year. Everyone kept asking me if I was really sure we wanted to take this on. They didn't even announce that it was at our place for a few weeks just in case we changed our mind (/came to our senses). They offered for the event to be potluck but I really wanted to cook for everyone as a thank you for all the class has done over the last year for our family. 

Knowing we would be out of town the weekend before the party Brad and I started decorating for Christmas the day after Halloween. I must have made a dozen trips to Hobby Lobby, Micheal's, Costco, and Walmart for decorations. My mom said I needed to be on a 12-step plan for my Christmas decoration addiction.

I planned the whole menu out with an excel file to boot. I went to Costco just for a planning trip to decide what to make and plan out the budget for it. I was SO excited. It was all I could think about the whole month of November. 

Then I wound up in the hospital with the flu, and my family got the flu, and my chemo day got moved to the day of the party. Talk about being bummed. Even the doctors at the hospital heard about my Christmas party and were working on getting me well in time to still host it. 

The leaders of the group called me all week begging me to call it off, that everyone would understand, no one wanted to get me more sick as I tried to run around getting everything ready. I finally conceded that I couldn't cook everything since I was getting chemo the day of the party, but Brad and I still really, really wanted to host it. We had just worked too hard getting the house ready for the party. 

In an email to the class leadership I said doing this party was like the Make a Wish foundation- my wish was to host a Christmas party!

This is how awesome our church group is- they rallied around me and essentially threw the party for me. I sent out a list of things that still needed to happen and they made it happen. All I had to do on Friday was show up (granted, at my own house). People brought food and drinks, paper plates and cups, friends came over after I got home from chemo and decorated my Christmas tree and the house. Someone even bought White Elephant gifts so Brad and I could participate in the gift exchange. It was incredible!

And you know what? The party turned out way better than if I had tried to pull it all off on my own. People picked up to-do's that fit their strengths and really nailed all the details of the party. Everyone seemed to have a great time and I was completely stress-free. 

Do you think it is too early to start planning for Christmas Party 2015? ;-)

Thank you to Lisa for taking all these photos at the party!

Brad did an awesome job on the lights!

My team of "elves"! They were the magic that made the party happen!!

Janice sent this beautiful arrangement!

The Ranges sent an arrangement too!

Favors

Love my Lands End stockings. They look like Grandma knit them!

What a good looking group!

They look good even while being silly!

Happy Birthday Jamie!
Thanks for spending the day with me and decorating my tree!!

Love my handsome husband. Doesn't he look dapper?

This Christmas tree was naked about four hours before the party started!

Thanksgiving = Flu

After 5 ½ months of being completely sickness-free, I came down with the flu over Thanksgiving. The good news is I’m still alive! The bad news is chemo was delayed and David and Noah got sick.  But I'm getting ahead of myself...Thanksgiving week started with an early trip to the airport to fly to Atlanta.

Us in the car at o'dark thirty on our way to the airport!

The week in Atlanta was really nice (once we arrived). I don’t recommend anyone try to fly with two "lap infants" (as though Noah could be called an "infant" anymore). It is totally nuts- and that was with me in a wheelchair and a guy helping us get through security. They made us sit on separate rows since there's only one extra oxygen mask per row of the airplane.  Brad said that given the stress level already he'd rather sit together on the same row and if things went bad enough to warrant the use of oxygen masks he'd volunteer to go without.  Noah (with Brad) was great on the plane - though Brad had to apologize to the jet-setters sitting next to him since they heard "Cat in the Hat" more times than they probably wanted to.  David was also good - so par for the course for him.  So thankfully the plane was fine, it was mostly the logistics getting on and off that were stressful.
In Atlanta we enjoyed spending time with Brad's folks, and both of our siblings and their spouses/kids. I don't get to see my brother that often so spending time with him and his new bride was wonderful! 

I stayed up until 2am making pies the night before Thanksgiving...maybe that is how I got the flu!

One night while we were there I was reaching into a trunk for something and the trunk lid came down on my head. I fell to the ground screaming- "Brain bleed! Brain bleed!" This was a fear of low platelets that my oncologist had instilled in me to try to keep me from doing things I shouldn't - like getting up on ladders, etc. I was fairly confident that was the end for me. My head was going to turn into a soup of bloody mush. Thank goodness my brother and sister-in-law are physical therapists. They were able to calm me down, put some ice on it and declare me fine. Turns out I have a pretty hard head.

On Sunday, Brad and I had the opportunity to speak at the Range’s church in the youth group. They are studying Joseph and the suffering that he went through so they thought our story might fit in well. It was really fun. I would love to do this more often. It makes me feel like what we are going through is not for nothing. We will get the opportunity to speak again in a couple weeks at our church group. It is fun getting to share the lessons God is teaching us with others. Maybe others can learn these lessons without having to go through suffering themselves!

Sunday afternoon I started not feeling so hot to the point where I couldn’t get out of bed to help Brad pack. My temperature started climbing and the doctors said to go to the ER once we arrived in Dallas if it was above 100.4. Let’s take a moment to talk about how much of a hot mess I was: we were sitting at the gate; I was feeling miserable trying to handle David while Brad was down the terminal chasing after Noah; my nose was just run, run, running; my fever was going up, up, up; Noah is running all over the place, melting down because he is starving- it was pure craziness. You know you are hot mess when half a dozen strangers ask you if you are okay and if you need help. I started crying as this sweet lady told me about her husband’s terminal cancer situation. (She even wrote this super sweet note to me on the plane!)

I went and took my temperature one last time in the bathroom (didn’t want to scare anyone sitting at the terminal with all the recent Ebola stuff!). It was up to 101.4- it just flew past the 100.4 mark. I texted my oncologist and she called me back immediately telling me I shouldn’t get on the plane but should get to a hospital ASAP. (How awesome is she btw, calling me on a Sunday evening!!) Brad and I were about to be the last ones to board, our bags were already gate checked and on the plane. We had to make a split-second decision- Brad and Noah boarded and David and I left the gate to leave the airport. This is going to sound super-melodramatic now knowing the end of the story, but at the time I was scared as I said goodbye wondering if I was going to see Brad again. See, I told you, melodramatic; but it really was scary at the time!!

My in-laws were already back home by this point and would have a 45-minute drive back to the airport. My oncologist told me to take a cab as every minute counted and I needed to get IV antibiotics in me ASAP. There was a line at the taxi stand and the traffic was bad on the way to the hospital so I made a crazy decision and called 911. As nutty as it sounds to get an ambulance to take you to the hospital for the flu (again, we didn’t know it was just the flu at the time…), I think it ended up being the right move (of course I haven’t gotten the bill for it yet either…). For one, I don’t think I could have handled David by myself getting to the hospital. Secondly, I would have had to sit out in the ER waiting room catching who knows what kind of diseases. Turns out it looked a little sketch-McGee out there in the waiting room (so is sketch-McGee really not a phrase? There has been great debate about it since I used it in this other blog.  Brad says it's definitely NOT a phrase.)

David and I were waiting outside the airport when the fire truck pulled up, parting four lanes of traffic in front of the airport like the Red Sea. It was sort of embarrassing having a bunch of EMTs coming to rescue from your….fever. An ambulance came up behind the fire truck a few minutes later. At first the guys were like, uhhh how do we get this baby into the ambulance? But it turned out they had a whole contraption for a baby. Once I was in, my temp was up to 102.7. David was a total gem (per usual). I tried to get a picture of us riding along but felt bad being like, I feel good enough to get a pic for my blog but bad enough to need an ambulance.

David chillin' on his first ambulance ride

The EMTs with David. He looks so happy!

Like I said, we got to skip the waiting room, which was awesome for not picking up any more diseases than I already had. It did take a super long time to get things moving while at the ER. I guess in the ER some lady with a fever is sorta bottom of the totem pole. They tested me for a million different things (love how thorough they were!), got me hydrated, and on IV antibiotics. I moved to a floor bed around 3:30AM.

My sister and brother-in-law drove down to the hospital and kept David while I was there. (Thanks guys!) My in-laws stayed with me in the ER until late, which was also super sweet. It is crazy to think that I’ve known Brad’s family for 10 whole years now! They hosted me for Thanksgiving in 2004 before Brad and I were even dating. It was so nice to have family support while out-of-town.

The doctor on the hospital floor was so sweet. He came and listened to my crazy life story and said he was so sorry that I had cancer. He was super understanding and empathetic. It was fun getting to show him my platelets and immune system charts. I’m such a nerd. The best part was that the doctor was super into getting me out of the hospital ASAP so I could get back home to get chemo and increase the likelihood of me getting to have my Christmas party. Check out the “goals” for the day in the hospital:

Today's Goals: To get better for chemo and stay alive

I got out of the hospital Monday, still feeling really bad with fevers. I crashed at the Ranges and slept almost constantly- except for midnight-3AM cyber Monday when I power shopped and bought presents for everyone on my list! That was pretty sweet.

ThankyouverymuchCyberMonday!

I was able to pay $100 to get a confirmed ticket on a flight home Tuesday. My mother-in-law went through security to accompany me to the gate. We finally made it home! It felt so good to finally sleep in my own bed again!

I took the boys into the doctors office (by myself) on Wednesday for David’s 4 month check-up and because Noah was sent home from daycare Tuesday with a fever. They both had confirmed cases of the flu- hurray! I showed up to the appointment an hour early on accident. When the receptionist told me that I just broke down crying. It was sort of embarrassing, and sort of like I didn’t even care at that point. Having the flu and taking care of two small children with the flu is really difficult it turns out.

My chemo got pushed from Tuesday to Friday to allow me some time to recover. I lost my voice Thursday so I was pretty nervous they weren’t going to give me chemo. My doctor started me on antibiotics just to be on the safe side. On Friday my numbers were all nice and high for chemo– yay for chemo! This was my second-to-last Chemo on this regimen, so just one more week the next Friday will wrap it all up. I’m trying not to get too excited knowing that I might go back to chemo depending on the results of the surgery.

I ended up not having a voice for NINE whole days after the flu (Brad says: "It was terrible"). You know how hard it is to communicate with people (including your two year old) when you don't have a voice? It finally came back the next weekend, when we had friends fly into town and we spoke at our church group. (Nice timing!)

Thirty

[This is what I wrote the night before my bday- Nov 22]

Six months ago as I looked toward my 30th birthday, I was honestly a little depressed. My twenties had been pretty exciting. Being a newlywed with Brad had been a blast, we traveled all over the world, and even got to have an adventure in Boston for two years. Moving from Boston to Dallas, and then into the suburbs with two kids had been quite the slowdown. I could even see a minivan in my near future. I was having a "one-third life crisis".

Then five months ago all of that changed. It is a strange thing to have your view on birthdays totally flipped around. It was as if I was transported back to 15 when turning 16 was the best thing since sliced bread. I suppose every birthday could be your last but when you have a prognosis like mine and you know there is a specific (and substantial) percent-chance of not making it to your next birthday, it makes it a much more sobering celebration.

I used to be annoyed that I was getting wrinkles so young. I have these great smile lines around my eyes from a combination of too much sun for a fair-skinned gal and lots of smiling over the last thirty years. I would complain: how could someone have pimples and wrinkles at that same time?! It just didn't seem fair.

Now my perspective has completely changed. No longer will I complain about wrinkles, never again will I be upset about turning another year older. I am so thankful for turning thirty, for being in the burbs with two beautiful children, for seven amazing years of marriage to my husband, and for "boring" Friday and Saturday evenings at home.

Life is so extremely precious. My hope is that as you read this, you will take this to heart and apply what I am learning without having to go through cancer yourself.

[This is what actually happened on my bday- Nov 23]

It turned out that my 30th birthday was pretty depressing. For some reason I couldn't get my mind past "what if this is my last birthday?". I kept picturing the survival curve and thinking about how there is a 30% chance that this would be my last. Depressing, right?

I was also super weepy all day. I was awake with my thoughts most of the previous night so that didn't help anything.  We got ourselves to church that morning but Brad had to say our prayer requests (I didn't trust myself to speak without crying) and we ended up leaving after small group and not staying for the service so I could take a nap and try to feel better. I was a hot mess (story of my life, right??).

People were super sweet with flowers, gifts, and cards, and that really did help pick me up through the day. My folks took us out for Mexican (and I may have cheated and had a margarita). But even that was kind of a bummer since the service took forever - we were there for 2+ hours which isn't the best when you have two kids under two trying to keep it together. And my mom asked for them to sing to me but they just brought over the dessert instead (I'm one of those weird people who actually likes the waiters singing to you).

One really good highlight from my bday was a quilt that many of you signed over the past few months. A friend made the quilt and then had it sent all over the US to have many friends from different parts of my life sign. Brad did a great job coordinating the movement between cities. Thank you to everyone that worked to get it signed and sent it from city to city.

Thank you Chadin and Mrs. G for the quilt!

I think the biggest thing contributing to me being down on my bday was the tumor popping back up the week before. With the week-long delay in chemo it went from not being able to feel the tumor to it being 1x2 inches overnight. That is ridiculously scary. Whenever my tumor comes back it is harder for me to stay positive and think that we will be able to beat this. Sometimes I am able to rationalize through it and know that worrying about it isn't going to make it smaller.  "Don't worry about tomorrow for tomorrow will have enough trouble of its own", right?

Praises + Prayers (12/8)

My apologies for not posting for awhile. I've had a busy/crazy/crazy-busy couple of weeks. I'll work on updating the blog over this next week. Here's hoping that this week is calmer than the last two have been!

Praises
+ Was able to host our church group's Christmas party due to some amazing support from my friends. It was a huge bright spot for me.
+ Almost done with this regimen of chemo- last treatment is scheduled for Friday
+ Was able to speak at a church's youth group about what we are experiencing - praise God for using our situation for His glory

Prayers
+ David and I are still struggling to recover from having the flu last week. Prayers that I would regain my voice and that David would start feeling better. I really don't want this to turn into something more serious for either of us.
+ Chemo was delayed last week because of being sick. My tumor is back to growing again. Very, very scary to see it growing before my eyes, especially this late in chemo...not as hopeful for a pCR any longer. :-(
+ Prayers for the doctors to have wisdom on when to operate, whether or not to do more chemo, if more chemo, what to try, etc.
+ Prayers that the tumor(s) would not grow in the interim between chemo and surgery and that if they do grow that I will not spiral mentally
+ This is small, but I'm finally feeling the effects of 6 months of chemo - weird sleeping patterns, mouth sores, a little bit of neuropathy, general fatigue; prayers that I would have the stamina to finish chemo strong