Trucking on...and our weekend plans

Soooo happy Friday is here again! This has been a really good week for Aus. He is now 8 treatments down and has 17 to go. We are getting there!! His side effects have been really minimal this week so that has been great. The only thing new was this metallic taste he was having (which has gotten better) but he said his mouth tasted like he had been sucking on a penny! Yuck! And now it's Friday and he has a two day break. I am really thankful his body is handling the chemo so well, because if it didn't, (which is common for a lot of people) then they would either decrease the dose or eventually have to stop it all together. Studies have shown that radiation is most effective when combined with certain chemo drugs so I am thankful his body is allowing him to take the chemo which puts him in the best possible situation for this to be effective. Another gift from God, as this could be so much worse.

We have a little Save-the-Date shoot at the beach this weekend so we are headed south tomorrow morning. We are going to Atlantic Beach (a first for me!) and I am exited to check it out. We are staying Saturday night and then plan on hanging by the water Sunday and driving home. I do feel blessed that our job gives us so many opportunities to go to the beach. We missed both of our family beach trips this summer so at least we are making it up a day here and there on the weekends. I think it is very therapeutic for us both! 

Our anniversary is on Tuesday and tomorrow (the 18th) is the 3 year anniversary of when we got engaged. We figured we would celebrate all of that at the beach this weekend too. After all, we got engaged on the beach so that will be fun...what an awesome day/night that was! 

Aus is about to finish treatment now and we are headed back home to go to work. My job has been soooo amazing with me and allows me to come with Aus most mornings. Today I will get to work about 9am and work until 7pm, so I am very thankful for the flexibility and being able to be with Aus on these not-so-fun mornings.  

Going down memory lane this morning...hard to believe this was 3 years ago!

Hope everyone has a great weekend!

 

TGIF!!!

We are back at the cancer center bright and early this morning. I am so thankful I am able to be here with Austin again today. Today is his 3rd treatment day and all is well with the radiation. The chemo, ehhh, not great, but not awful either. He has been having a few side effects but we are learning the best way to deal with those. I think eating a lot of food when he takes the pills definitely helps!

We are sooo glad it is Friday! Aus has a two day break and that is going to be so nice. Of the 5 and a half weeks he has to go through radiation week half is complete! Only 25 more zaps to go. It will go by fast, I know it will.

We have Abi this weekend and plan on relaxing and having lots of fun. We are thinking we will go to Emerald Point on Saturday for a super fun day of wave pools, lazy rivers and water slides! Austin will have to wear a shirt because he can't get much sun exposure but other than that he will be just fine. We are realllllly excited about it!! Right now we are definitely living for the weekends! Hope everyone else has a great weekend!!

Here we go!

Day One: I'm sitting here in the Cancer Center while Aus is back for his treatment. Today (8/8) is his first day of radiation and chemo. He took his chemo meds this morning and so far so good. He will take the chemo twice a day on days of radiation (Mon-Fri) for 5 and a half weeks. I'm hoping these weeks go by fast so we can put it behind us. We are both a little anxiuos about the side effects but I really do think he is going to be just fine. His body really is stuper strong and can handle a lot (hellllllo 5 lb tumor!) so I almost bet this radiation doesn't even phase him. I do worry about how tired he will be...from the radiation but also the fact that he has such long days, waking up at 6:00am to take his meds and get here by 7:00 for treatment. He doesn't want to miss any work so they were able to schedule his treatments before work with hopes that he could get to the office by 8:00. I am praying that he handles the radiation well and is able to drive himself here on days I am working. I will come with him as much as I can but on days I work he will have to come alone. :( I wish so bad I could come with him everyday, just so he didn't have to be alone, but he reassures me he is just fine. He is much braver than I am!

I will be back to update as he gets further into treatment. Please pray that he has minimal side effects and tolerates these next 5 and a half weeks just fine.


This is where all the magic happens! So thankful for this place. And double thankful that it's only 10 miles from our house. We are blessed beyond words.

!!!!!!!!! AUS !!!!!!!!!!!!!!

Quick update on Austin: we got the results back from the biopsy (of the suspicious lymph node) yesterday and they were NEGATIVE aka NO MALIGNANCY aka NO CANCER! Holy moly excited! I can't even put it into words...I felt like my body released something...some sort of shell or something. You know you hear people talk about "it feels like a ton of bricks were lifted off my shoulders" but I swear, for real, something released out of my body. And it was amazing! For some reason it was an even crazier feeling than when the surgeon told us they were able to remove the tumor. It was the strongest, most powerful feeling thus far. Well, a close second would be when Aus left work to come home to tell me that they were going to operate. THAT was an incredible feeling, too. Anyway, my friend (also one of Austin's surgeons) at work actually texted me about 1:00 yesterday, "you saw the path report I'm guessing?" I replied..."umm, no!" "OMG, no" "what, what, what!" and then he told me. It was an amazing moment. Aus had just left the house headed back to work from his lunch break so I was sitting by myself and I just wept and wept and prayed and prayed and thanked the good Lord. I was so so happy, and they were finally happy, happy tears.

Shocked & Scared...the latest with Austin

We are on a roller coaster for sure. We went in yesterday for a PET scan for Austin so they could evaluate his liver growth before we started the radiation. We were totally caught off guard when Dr Czito (who I really really like by the way) came in to tell us that there was a paratrachea lymph node that was slightly enlarged and "glowing" on his scan. The lymph node is up high, in between his lungs, near his trachea (throat). When things "glow" on PET scans that is usually an indication of metastasis or inflammation. He told us not to freak out yet (easier said than done) and that we will biopsy the node to see if there is any malignancy or not. 


I just got off the phone and the biopsy is scheduled for this Friday at 10:30am. They will put him to sleep and pass a tube down his throat to biopsy the node. This should be less painful than his previous biopsy since they aren't having to cut him. I am hoping so at least. I of course just wish he didn't have to go through all this. 


So, now we wait and see. Dr. Czito said this would be a total "game changer" if it comes back malignant. Because we would no longer be looking at localized cancer, we would be looking at a malignant systemic cancer. Please, please, please God don't let that be our fate. I really don't believe it is but at the same time, I never believed his liver tumor would come back as cancer either. 


If the biopsy comes back as normal healthy lymph node tissue, showing no malignancy, then the plan is back on with what we originally thought. We will do localized radiation therapy to his liver edge where the tumor was removed. The therapy will be 5-6 weeks everyday, Monday - Friday and then he will be finished. While he receives the radiation he will also receive a chemotherapy drug to help aid the radiation, essentially to help it work more effectively. The chemotherapy drug is a "radiation sensitizer" and is called Xeloda. We will have more discussion of this before we start treatment but that's the brief details. 


If the lymph node comes back with a malignancy then radiation will no longer be in the plan. Radiation is for localized treatment (you can't radiate your whole body) so since Austin's cancer is no longer localized he would no longer be a candidate. We would most likely look into a longer chemotherapy regimen and possibly surgical removal of the lymph node. Dr. Czito said these nodes aren't typically removed, but given that he isn't a surgeon, I don't' really know if I believe that. A pulmonologist will be doing the biopsy and I feel as though he can better tell us if this node can be removed or not. Anyway, no need to go there until we find out what is going on with this lymph node. 


On a better note, we didn't talk much about his liver growth since this came up but he did briefly say that his liver looked good. All of his labs that were drawn yesterday looked wonderful and his liver function remains perfect. Also, the lymph nodes that were enlarged originally, near his liver, are no longer enlarged. Praise God! I was really worried about those and almost felt as if they were overlooked. They were enlarged as a reaction to the tumor but are now back to normal size. That did make us feel really good. 


God is really testing our faith right now. He has been so faithful to us so far and we have no reason to believe he won't continue to do so. It's hard, not letting your emotions take over and thinking about the worst, but that just shows my lack of faith. I am trying my hardest to believe and have faith in God. I have surrendered myself to Him and Austin and I are learning every day more and more that we are not in control of this life we live. 


Whoever reading this, I don't know who you are, but I do know there are a lot of you. My blog tells me there are hundreds of people reading these posts and I love that. Please pray for us, please pray for our strength and peace, and our faith. I pray for stronger faith every day and I pray Austin stays mentally strong as we fight this fight. It is a battle for sure, and our lives have forever been changed. 

Anxious...

Feeling kind of anxious today. Tomorrow we go for Austin's PET scan. The radiation oncologist has ordered the scan so we can evaluate Austin's liver size and see how well it has regenerated (grown back) since his surgery. Before they start any radiation therapy we have to make sure his liver is large and well enough to handle the treatment. They can also see any areas of metatasis and I guess that is what I am anxious about. They have told us the cancer was contained to the liver, the CT and MRI showed no evidence of mets but I guess with the different imaging - the PET scan - I worry about something crazy showing up. I'm sure not, but I am getting a little anxious regardless.

I hope we find out great news, and for that I am excited! I hope we hear that they don't see anything and his liver has grown back really well and we can start radiation. Austin has labs first and then the scan is scheduled for 11:30. We have an appointment at 3:00 with Dr. Czito where we will discuss the scan results and figure out the definitive plan. Please pray for our strength tomorrow and for good results! And also please pray Austin is strong while he lays in the scanner...for 30 minutes or so...it's a long time to lay alone and think. Love you so much, Aus.

And we keep truckin' on...

We are alive and well in The Green house! I have been neglecting my blog lately...per the usual, right? ;)

Just wanted to write a quick update...Austin continues to do well and is working 3-4 days a week now. His surgical pain is pretty much completely gone but he does have some lower back pain occasionally that requires him to take pain meds. He is eating well, gaining weight, driving all around and pretty much 95% back to normal. He is even getting in the pool and the lake! Not even 6 weeks post-op...WOW! I am back to work, mostly working 2 days a week and trying to keep up with all the WPP work since Aus has been out of commission. We are managing and still enjoying our summer as we should! We went to SML this past weekend to celebrate the 4th of July and had tons of fun with all the sibs. And let me tell you, we put on one heck of a firework show, too.

We have our next doctor appt on Tuesday (17th) where they will do a PET scan to see how well Austin's liver has grown back and map out his anatomy for potential radiation therapy. They should tell us a definite plan on Tuesday but we feel pretty confident radiation will be in our future. And we are ok with this.

I made these cake balls to take up to the lake...they were DELISH and so easy. Leila and I made some for our Christmas party last year after trying to attempt something that resembled a cupcake. Whenever you fail at your cake baking or decorating, no worries, just turn it into cake balls! I made these super easy...baked a cake, crumbled it up, added in a tub of icing (normally I would make the icing but I was in a hurry) and then rolled it and formed the balls. Froze them a bit and then covered them in white chocolate (dyed that red and blue). Easy breezy!

Abi jumping in...loving SML!

Our water dog that needs a life jacket... :(

How cute is this suit!!?!?...and those knees!!

Say whaaaaaat Uncle Aus?

Chillin with Panama Jack!

Yo. Laiiiiid back.  

Sweet little nap. Love them!

Katie brought her two kiddos up on Tuesday and we spent the day at the pool. Complete with a pizza party!!

 Aaaaaaand I leave you with last nights dinner...feta burgers and caprese salad...nom nom nom.

Update on Austin...it's hard to keep up!

I am having a hard time keeping up with my blog these days. So much is going on and it seems like I spend my time on the internet reading and researching FHC as oppose to updating this blog.


Austin had his appointments with the medical oncologist and radiation oncologist to discuss possible treatment options. I will go into those details in a bit, but basically we still don't know 100% the game plan. The doctors were disagreeing to some extent about appropriate treatment and have scheduled a PET scan for July 17th and another appointment to discuss the definitive plan. 


In the mean time...we have joined the Facebook group "Fibrolamellars of the World Unite!"  and it has been so helpful. I encourage our family and anybody reading this blog dealing with FHC to join the group. There is a lot of support and knowledge and as one group member said..."you will learn more about this disease in this group than you ever will in a doctors office." I have learned soooo much from them already and feel so thankful for all the relationships we have made so far. 


I have been e-mailing this morning with a women in Colorado who found this blog googling FHCC blogs! I love that. Her husband is in a very similar boat as Austin and is about 5 weeks behind us, as they are waiting to see if the tumor will be operable or not. It is very nice to compare stories and hear what her doctors are saying to her. 


I just submitted a request to MD Anderson in Texas as they are one of the leading hospitals with FHC research. I'm not sure how it will work...if we will go there for an appointment, if they will talk with us over the phone, or if they will talk with our doctors via a phone consultation. I just wanted to get the ball rolling with that connection and hope to hear back from them this week. 


I feel most of the people I talk to and read about recommend these hospitals (MD Anderson, Rockefeller Institute and Sloan-Kettering in NY) and say "If I knew then what I know now I would have reached out to these places long before I did." I definitely don't want to be saying that in 1, 5, 10 years down the road. So, we are looking into those options now and I would feel sooo much better hearing some of those doctors recommendations, especially if they agree with our Duke doctors. 


Aus and I are taking things day by day. It's hard. We feel sad sometimes, we get discouraged. I try not to show it, but I do. Especially reading FHC stories, there are a lot of hopeless ones out there. We read a lot and say, "gosh I open that doesn't happen to us." It's scary. Lately I feel like I am living with this huge fear, this huge weight on my shoulders. Another reason why I write this blog...it helps me deal. 


This article was posted in the FHC group today and I thought it was so good. And so true. Sometimes I think now that Austin's surgery is over people think it's just over and done. That was it. The cancer is gone and they got it all. I wish we knew that. I wish we had some facts about that. But we don't know that. We just don't' know. And that scares the shit out of me. We don't know if it's still there or not, and we definitely don't know if it will show it's face again. I remind myself daily of the good facts we do know, about the contained tumor and clean margins, but still, that only helps so much. There is a huge fear with cancer I am learning to find out. 


Click HERE to read the article- "The things I wish I were told when I was diagnosed with Cancer" 


Austin is going to work a few days this week and that will be good for him I know. We have been eating lots of liver food and he is taking lots of vitamins. I have him on quite the regime: Acai juice, Vitamin C, D, E and Milk Thistle. 


We are also rubbing Vitamin E on his scar everyday. See how good it looks!! 

We went to the beach last Sunday for the day. It was super fun and just what we needed.

Aus doing what he loves... 

Susan, Aus and me! :) 

Molly girl loves it, too! Right after she dug a big hole!

Love him!

Christian Grey, Mom's birthday and baby visits

A quick recap of the past week through iPhone photos...

I had to jump on the bandwagon and see what all the hype was about with Mr. Christian Grey. I have a few opinion on this book... But the bottom line is I can't put it down so I guess that's all that matters. Going to buy the second one this weekend. Hooked. 

Our for Mexican for Mom's Birthday last week. The first night Aus went out post surgery. So happy to be with mama on her Birthday!! Abi was with us, too! 

14 layer cake....ridiculous!! 

Frannie, Kevin and little Claudia came to visit last week. We had so much fun with them! 

I love this pic...I am ridiculously happy and Claudia is like "ummm, who is this crazy?" 

Gwennie getting her baby fix. :)

Totally milking this  whole "sick" thing. haha. 

Look at that mischievous face! 

Finally got new cushions and pillows for the front porch. PB had their summer stuff on sale!! 

Lots of news!! Austin is doing fabulous!

SO much has been going on this past week since we've been at home. Austin continues to do well and he is doing just as expected with the recovery process. I honestly can't believe how well he is doing and how quickly he is recovering. His pain is pretty minimal now and he is able to do a lot on his feet. He even makes frequent shopping trips to the mall with me. :)  We went back for his 2 week follow up appointment yesterday and all was well. They removed his staples, checked him out and told us everything looked great from a surgical stand point. They did draw some labs so we will know those in a few days. I am anxious to see what his labs look like now that he is tumor free!! We have plans to meet with two different doctors next Tuesday. First we are meeting with a radiation oncologist to discuss possible radiation therapy and then we are meeting with a medical oncologist to discuss the need for chemo. We don't know if Austin will do radiation or chemo or both. We will meet with them, hear their recommendations, then all the doctors will talk and develop a plan for Austin. I'm guessing he will do one of the two types of treatment, if not both. And honestly it kind of makes us feel better to do something just in case there is still cancer in  his body. They keep telling us "as far as we know" it hasn't spread and is all contained but still, things don't show up on a scan until they are big so it is possible there are still cancer cells present. These are all things we will talk with the oncologist about next week and I will update y'all once we know the plan. Austin is very encouraged and doesn't feel scared of either treatment option. So that makes me feel strong and encouraged too!

Ready to get these bad boys out!! All 67 of them! 

He might actually start back to work next week for a few days, or a few half days at least.

My mom has been here with us for a few weeks but last Sunday she had to head back to Chicago. We have had so much family at our house and it's been sooo nice. Today, (Wednesday) was actually my first day back to work. I was totally dreading it, mostly just leaving Austin at home and getting back to the grind of real life. Through all this craziness it has been really nice to have so much time hanging with Aus and being together. I do value that time so much! I was telling my dad I was dreading work a bit and getting back to normal every day life stuff and he said something so simple to me, "just be glad you can go back." As in, just be glad Austin's situation is good enough that we can go back to work...that we can get back to the grind of things with laundry, chores and grocery shopping. Be glad we can focus on our careers and continue to live this life we love so much.  It really made me think about all I am so glad for. We are so blessed. I am glad Austin is doing so well and we are able to truck on with life and get back to somewhat "normal" soon. I am so glad this is our reality. There were many long and sad days in the Green house not long ago wondering...wondering what was going to happen...wondering where we were going to be and if our life would ever come back to us. Our prayers were answered and I know God is in control of our lives. Each day I feel closer to Him and a greater understanding of why this happened to us. 

Sometimes Austin and I talk and it's like God just said "here. you have cancer. see how this feels. But wait a minute. I'm going to fix it, and cure it, and make you healthy again." It's like we just had a little taste of how devastating our lives could of turned. If this wasn't a sign for Got to show us he is here then I don't know what is. 

We were talking to Melissa (one of Dr. Clary's residents who helped with Aus' surgery) yesterday and telling her about things we read on the Internet about FHCC. She told us, "yea. there really aren't many cases like yours." Most of the time when FHCC is finally found it is very advanced and metastasized (spread) all over the body. Most people with this diagnosis (FHCC - liver cancer) are very  young and have a very poor prognosis. It just makes me ask God WHY? Why did you save Austin and give him this amazing prognosis when normally that's not the case for these patients? Why are so we blessed? I am overwhelmed. I am humble. I continue to be consumed by the power of God and his control over our lives.