Continued Improvements

So the last time I posted (which to me doesn't feel that long ago) I left you with a pretty big cliffhanger in the form of a prayer request for an upcoming brain MRI.  We had that MRI on Tuesday and...


*drumroll*


NO BRAIN METS!

Sorry to those of you who assumed the worst due to radio silence.  I wish I had a better excuse, but this is probably what you should expect with me at the wheel instead of Ashleigh.  Thank you for your continued prayers, they are most assuredly working.  Not just for the big praise above, but also in lots of other ways I'll summarize in the next few paragraphs.

The rest of the week has resulted in continued improvements in Ashleigh's alertness, cognizance, energy, and pain level.  We had a catheter installed (inserted? placed? "installed" sounds too engineer-y) on Wednesday to drain some fluid around Ashleigh's right lung.  While there was some increased pain associated with that, it has ultimately resulted in her breathing much easier and getting off of supplemental oxygen entirely.

Her liver function has continued to improve, so it's no longer a concern as of this time.  Her counts are staying pretty steady thanks to booster injections and some platelet infusions.  Best of all, she's up and walking around frequently...really, more like doing laps around the floor to build up her endurance.  If you know Ashleigh you won't be surprised by her insistence to always do "just one more" trip up and down the hall before resting.

With the heavy caveat that we're still taking things one day at a time, the plan right now is to do her second chemo infusion on Monday then get her transferred to an inpatient rehab facility.  She would get lots of physical and occupational therapy there with the goal of continuing to increase her energy and independence to eventually get back home.

There are probably lots of other things a more exhaustive update would touch on, like the difficult tension between trying to plan for the future vs. the significant uncertainties that still exist around Ash's prognosis.  Or, around how the boys are handling this; for the first time, I think Noah is really in tune emotionally with the fact that something is "not right".  Of course as a 2-year-old he is pretty confused and can't understand why momma isn't her usual play-on-the-floor self...but then as a 31-year-old I have a hard time processing it sometimes too, so I can't really fault him.  Anyway, the point is there are still many many things we are praying for, like:

+ That logistics would work out for the plan I mentioned above (insurance and some doctors still have to approve this course of action)
+ For Ash's pain to continue to subside so we can wean her off the IV pump
+ For her to continue to gain strength, independence, and increased mental cognizance
+ For sweet time with family and friends, especially with the boys (we're going to try to take them for a visit tomorrow morning)

In closing, I'll leave you with a few pictures from the last week:

 The Boys visited on Tuesday with my sister (Ash's Brother and Sister-in-Law in the background)

 The great view out of Ashleigh's room

 

First Baptist Dallas's Fellowship Class was kind enough to bring their Tuesday night Bible study to Ash!  She's been a part of this group for almost 5 years now.  We're very thankful for these ladies.

Best friend from college, best friend from high school, and hair gel (Ash wanted a Mohawk).  Ash is super sad to be missing our friend's wedding this weekend, but she was nice enough to come visit Ashleigh on her way to the altar.  Congrats Kris and Dan!

Today a great friend from Florida brought Ashleigh's favorite food from Melbourne, Dakine Diegos.  My sister and her daughter visited, too.

A Good Day

I wanted to share a quick update since so many folks have been so diligent to pray for us over the last 24 hours.  THANK YOU for the prayers and other forms of support sent our way.

Over the last year Ashleigh has posted periodic "Praises + Prayers" updates to the blog that all follow the same format, and I tried to match that format in the post yesterday.  At the risk of breaking tradition without clearing it with Ash first, I'm going to do something slightly different tonight.  I want to share how today God answered specific prayer requests that I posted yesterday.

ANSWERS to Prayers:
+ Ash was a ton more alert today, laughing and visiting with family in the hospital room.  She was even able to walk all the way down the hall to the lobby on her floor and visit for a few moments there as well.  She was much more her usual self, telling stories and making everyone in the room laugh
+ Her pain was much less severe and much more controlled.
+ Her liver function looked about the same - no drastic changes, which is the best news we could hope for over such a short timeframe

Since you guys were so great to help get those crossed off the list today, I have a few more for you:
+ Ashleigh has a brain MRI scheduled for tomorrow morning.  Obviously the prayer request here is that we don't see any evidence of metastasis
+ The doctors are still worried about her pleural space; we have a procedure scheduled for Thursday to get a permanent catheter installed.  I'm tempted to not even post this one yet since Thursday seems like an eternity away, but just in case I don't get a chance to update between now and then you can be praying that goes well.
+ Her blood counts (e.g. white blood cells, platelets, etc.) were pretty low today from the chemo on Saturday, so she got a platelet infusion.  There will be increased risk of infection over the next several days, so pray that her counts stay high and she doesn't get an infection.
+ We're going to try to get the boys there to see her tomorrow morning, in the hopes that she's as awake tomorrow as she was today.  Pray for sweet time together as a family.

We have a talk about our experience with cancer that we've given a few times now to various groups.  One of the points Ashleigh always tries to make during the talk was how she's learned to enjoy each day as it comes.  She would always say something like:

 I woke up today without pain.  I am able to play with my boys, and am here talking to you.  If I die from cancer, those things won't always be true.  So why would I let the fear of what may happen later steal my ability to enjoy what I have today?

 Even in the midst of being in the hospital with all the uncertainty facing us, Ashleigh had many long moments today where we were able to laugh and enjoy the company of family.

Today was a good day.

Praises + Prayers (6/14/15)

Hi Folks.  I wanted to provide an update to all of you faithfully following the blog.  First, do me a quick favor: take a deep breath, and promise not to freak out.  Promise?  Good.  Here we go...

We were admitted to the hospital last Wednesday because Ash was experiencing some pain on her right side.  I won't bore you with too many details or the play-by-play chronology of the last few days, but here is the synopsis:

- Her pleural effusion (cancer in the lining of her lungs) is worse
- She has new liver mets, and indications are they are starting to affect liver function
- Her hips and back are hurting, making it difficult to even get out of bed (likely from bone mets)
- Her right side is hurting (some combination of liver mets, pleural effusion, or other issues)
- She has been pretty "out of it" due to anti-anxiety drugs and pain meds she's been on

We started a new round of chemo last night.  While it is the only option available to us that has a chance of treating her cancer, there is also a high likelihood it could cause liver failure.  So our options were to chance it with the chemo, or go home to hospice now.  Those of you who know Ashleigh and have been following the blog over the last year won't be surprised by her decision: "Go big or go home".

So with that as the background, here is where our heart is:

Praises:
+ That her liver was well enough to receive chemo at all (this was debatable for ~24 hours)
+ That she was well enough to come downstairs to the lobby and see the boys for a while today
+ For awesome doctors and nurses who have supported us over the last few days and last year.  Specifically for our main oncologist, who is a literal God-send to us.  She is the perfect balance between hopeful, supportive, realistic, and always straightforward with us.
+ For an amazing outpouring of support and love from our family and friends.  Help taking care of the boys, help with logistics, with food, and everything else we could possibly need
+ For a wonderful nanny solution for the boys (thanks to those of you who helped look!)
+ For my wife's continued good spirits, good humor, and hope.

Prayers:
+ That the chemo would be very effective at killing cancer
+ That Ashleigh's liver would process the chemo without additional stress
+ For increased times of alertness from Ash
+ For her pain to be well-managed, or preferably non-existent
+ That God would continue to get more glory from her life than from her death...but that either way we would be faithful to proclaim the hope we have that comes from our salvation in Christ.  The certainty of eternity with God, especially in the face of death, is the only reason any of us are functioning at this point.

 Two final points.  First, remember when you promised not to freak out?  Well you promised.  All our immediate needs are being taken care of.  No one needs to take drastic action (e.g. jumping on an airplane to come see us) and for the love of all that is good in the world please don't blow up Ashleigh's phone with texts, no matter how well-intentioned.  She's not in a condition to respond right now.  Please email either of us or call or text me.  My natural inclination is to avoid over-sharing like the plague, but I want to give you an update so you'll know how to pray.  I'm trusting you to not freak out - we aren't.  Which leads to point 2...

Second, whatever the outcome is from here forward, we want to continue to emphasize that God is in control.  Just earlier today our doctor was in here explaining that we really need to temper our hope that the chemo would be effective (she said maybe a 10% chance).  Ashleigh very deliberately and lucidly said "my hope is not in chemo, or in you (looking at the doctor), or in him (looking at me), but in a life well-lived and in eternity with God." Our faith allows us to face this situation head-on, not because of some cultural expectation or some psychological effect, but because of who our faith is in: Jesus.

Cancer sucks, People rock

The past three weeks have been the most difficult weeks for me physically, emotionally, and mentally. I can feel the cancer spreading throughout my body through pain, breathing, sleeping, and overall discomfort. My brain is not operating like it should. My thoughts feel like I'm trying to run underwater; everything is fuzzy and disjointed.

Is this what dying of cancer feels like?

Even while I'm at the lowest of the low so far cancer-wise (I'm VERY aware that cancer gets way lower than here), the people around me have stepped it up once again to encourage and uplift me in unimaginable ways.

In general, I make it a rule to not mention on the blog gifts or nice things folks do for me because I don't want anyone to feel like their specific gift wasn't "good enough" to make it on to the blog. But I want to break my rule for one half second to share some cool stuff that has been going on!

Ally's Wish

Similar to the Make a Wish Foundation, Ally's Wish is a foundation that grants wishes to terminally ill young mamas (like me!). A blog reader nominated me and my wish was accepted almost immediately!

My wish is to throw a really big party (you know how I love a good party!!!). I've named the party the "Life Gala" and it would be a fundraiser for my under/no-funded types of breast cancer that seem to target young mothers - inflammatory, triple negative, and metastatic disease. My goal is to raise $100K in one night! (Go big or go home, right??)

There is a ton to be done and we want to throw it sooner rather than later since I seem to be deteriorating quickly. Ally's Wish is working on getting me an event planner so I will have minimal involvement. Once some of the basics are ironed out, I'll be reaching out to y'all to let you know where we need help (because we will need a TON!!).

Clothes
This seems really simple, but I don't have any clothes that fit. I lost my pregnancy weight 6 months after delivering Noah, and actually GAINED weight through my cancer treatment since delivering David. Gaining weight through breast cancer treatment is very typical (and annoying!).

So every day I sit around in the biggest PJs I own (pretty much maternity ones, in fact). Some of my friends got together and took me on a shopping spree. They bought me much nicer clothes than I even had before, and the best part is- they actually fit.

We found outfits that are both comfy AND cute. Getting out of bed and having a cute outfit on has made me feel better mentally, too. I've been strictly advised not to lose weight right now (very bad prognosis factor for cancer). Part of my friends' strategy was to buy me jeans that are 5X more than I have ever spent on jeans. Now there is no way I'm going to lose weight and not fit into those jeans!!!

Lawn
Maybe it is a moving to the suburbs thing or maybe it is because I don't have even the slightest modicum of control over my life right now, but I have been OBSESSED with getting my yard to look good. I have thrown so much money at my lawn maintenance company to make it look fantastic and for some reason it just hasn't worked. (Maybe it's God teaching me that I really don't have ANY control over ANYTHING.)

I casually mentioned this to my neighbors (who I just adore bytheway). They have a fabulous looking lawn. In the last week, they had their lawn company come and put this fancy-dancy topsoil on top of my lawn, fill in all the flower beds, filled all the pots and hanging baskets. ANNDNDND I've been wanting to put a rug and pillows under/on the rockers we have. And they did that too! And it looks like I picked it out myself. It is so me.

It is surprising how much joy that lawn project brought to my life.

There are other big projects like these going on right now too but I want to wait until they are further along so I can show pictures with them.

Can you see how fabulous my life is? A husband that is stepping up and taking so much responsibility on, my parents and in-laws that just keep giving and giving of their time, countless souls begging the Father for more time for me, my precious, funny, and healthy little boys, people that take time to look beyond their own crazy lives and to-dos and figure out ways to make me smile, physicians and nurses that are bending over backwards to figure out how to borrow more time for me, the list goes on and on and on. 

"Remember you are immortal until your work is done." - Jim Elliot

My work here on earth is not done. I don't believe God is through with me yet. Let's all keep praying that God would get more glory out of my life than out of my death. And please, oh please, pray for wisdom and open doors, for the next step to be clear and soon. Love y'all.

Pictures from the Hospital

Houston

Researching trials with Angela in Houston

Thanks Angela for staying so late even when you had to go back into work that evening- you are the best!!!

on the drive from Houston to Dallas (where we went directly to being admitted). I was in 9/10 pain- felt like labor pains, except instead of knowing you were getting a sweet little baby at the end, I knew it was cancer taking over my spine- yippee!

Hospital

I'm goal oriented, even while in the hospital.
Nurses were always surprised to learned that I had written my own list of goals while there.
(apologies for the TMI...) 

The large windows in the room made for great makeshift white boards to keep track of trials...

...and to-do's / the schedule

Took an ambulance to get my radiation simulation done since I was an inpatient. It was fun!

The Boys Came to Visit - yay!!!

Who says you can't take care of a baby while in the hospital? Cuddling with David is the BEST!

David loves to stand and bounce, bounce, bounce!!

Noah was all over the place climbing everywhere. Maybe this is why they have a minimum age restriction for visitors. (that the very nice charge nurse made an exception for)

And when the boys couldn't visit, we skipped on the super fancy TV/video system in my room. 

Discharged from Hospital

(I should try and get a more complete blog post on the hospital visit out soon. Just things have been crazy and I haven't been able to write. So here is a drug-addled bullet point blog post to just quickly get something out there tonight.)

+I was discharged tonight. The doctors were able to get me off of IV drugs and on to just oral ones I can take at home. I'm on an embarrassingly high amount of pain killers. But they are working and I'm comfortable which is amazing. (Every day you wake up without pain thank Jesus for that- don't take it for granted)

+I've been overwhelmed with trying to figure out the next step for treatments. We have a ton of leads for trials (PD-1 and PD-L1 mostly). With being in so much pain this weekend and now being doped up on pain killers, my brain is not able to handle staying on top of all the phone calls and research and to-do's needed to figure out what to do next. So my amazing friend Julie​ (who happens to be a radiation-oncologist) booked a flight this afternoon and is coming in right now to be my captain and figure everything out for me. Thank you Jesus for Julie.

+Coming back home to the boys was very painful this evening. Every little cute, adorable, smart, fun thing they do just made me cry tonight thinking about leaving them so soon. Emotionally this is hard to deal with.

+My oncologist gave me two months left to live if we did nothing / if nothing ends up working with the trials (which have a low probability of working). I'm having so much fun and I'm not ready to leave the party yet. I'm doing my best to submit to God's will and know that his plans are always better than mine, but it still doesn't take away the sadness of leaving my family so soon.

+I feel so horrible about making so many people around me so sad. Brad losing his wife, the kids not growing up with their mom, my parents being crushed, my friends being heartbroken, even readers on the blog saying that I've made them cry- I'm so, so, so sorry everyone. I like making people laugh and be happy and have fun. Making everyone sad is the pits.

+I'm really trying to stay focused on keeping my eyes on Jesus. Even in the middle of the storm, if I'm reading my Bible and praying, my heart is full of peace and joy. I still have hope for a miracle. One of these drugs has a low probability of working, but if it does work it could change my situation dramatically, and for a very long time. I feel more loved and cared for than ever before. Thank you to everyone that has reached out and loved on me. (Don't forget Brad- he needs love too! Guys, make sure you ask him how HE is doing too.) :-) I'm thankful for all the many, many blessings in my life. Too bad just one little bummer thing could take it all away very, very soon.