We have a plan

Whew, what a roller coaster ride the past 2 weeks have been. 

We were blessed with the arrival of our daughter, Aria Zanne on July 2nd.  Among all the chaos of our circumstances God blessed us by allowing me to go into labor naturally at 38 1/2 weeks, only have 8 hours of labor and deliver a healthy baby.  

Brandon's biopsy was supposed to be that same day, so we had to reschedule.  However, upon arrival to Labor & Delivery Brandon was feeling ill and had been fighting a fever the past 12 hours, so his oncologist told him to go get checked out in the ER, so against everything he wanted to do, he headed to the ER while I was in labor.  Thankfully we hired a doula who was there by my side for the 3ish hours Brandon was getting blood work, a CT scan and xray.  He made it back in time (with wheelchair escort service and a lovely hospital gown) for my epidural to kick in and for the birth.  Huge thanks to the team at Exempla Lutheran Hospital for working so hard to get him looked at and back up to me in L&D.  In the end they could not find any signs of infections and released him with some meds.

On Monday he had the biopsy, and they were actually able to get samples of both the neck and the abdomen.  There was confusion about a third location in his back, but it turns out that was some sort of miscommunication.  The preliminary results of the neck were not obviously cancer, which got our hopes up really, really high. However, Tuesday evening we got the news that it is indeed a recurrence of the colon cancer in both locations.

Today Brandon met with the oncologist for the plan.  He will start chemo on Monday (14th) and will be the same regiment as the last time, except using the modifications that we figured out along the way last time.  And, the plan is for 8 rounds of treatment (last time was 12) then a PET scan that will HOPEFULLY, Lord willing, reveal remission.  

He will go in on Monday, get chemo for a few hours then get hooked up to a pump to come home with til Wednesday disconnect, then in on Thursday for a white blood cell booster shot and repeat every other week.  This time we will start off right away with an anti-nausea med called Emend that was a huge help, a 10% reduction of the chemo, half dose of the Avastin and some additional new concoctions the doctor has found to help other patients. 

Our oncologist spoke very optimistically of getting Brandon back into remission based on how he responded last time and how long we kept it at bay.  This is very hopeful for us all, as this doctor never said that the first time around.  

So, please join us in Praise and Prayer:

Praise:
-God allowed us to find this early.  His next PET was not til August, and of course the earlier caught the better.
-We are blessed with a beautiful daughter to bring joy to this difficult time.
-My lupus has been under control after birth, against all odds
-The support of our families has been absolutely unbelievable.  

Prayer:
-Pray that Brandon responds better to the treatment then last time, allowing him to still be active in life during treatment
-Pray that the 8 treatments are more then enough to return to remission!
-Pray that God fills us with the strength we all need to get through this together, it will not be easy.

Where we wait

I wanted to quickly let everyone know what is going on.   

Basically, for a while Brandon has been feeling unwell at times, off an on.  For the most part it seemed to be attributed to his Avastin Treatments.  His last PET scan in February was clear, and he wasn't feeling great at times then, so we had been pursuing other possible issues. 

2 weeks ago he met with a Urologist and his Gastroenterologist.  The GI doc (who is absolutely fabulous), ordered a CT scan and blood work including checking his thyroid and CEA levels.  Based on the symptoms and the fact that Brandon discovered there was a dosage mistake with his thyroid medication over the past 5 months (only getting 25% of the dosage needed), we were quite confident that had to be the issue, paired with his kidneys just being tired of the Avastin. 

When the CEA levels came back raised, it brought up a level of concern that maybe we should just get a PET scan instead of a CT scan to just rule out that option.  The doctors ordered an Urgent PET scan for the next day and a few hours later we got the dreaded call. 

It showed activity in lymph nodes in the abdomen and the neck.  It seems that the area in the abdomen is a different location then the previous effected lymph nodes and is near the aorta, meaning it can not safely be biopsied.  However, they can biopsy the lymph nodes in the neck and will be doing that tomorrow or Wednesday.  Hopefully we will have results within a few days, or by the end of the week. 

Our Oncologist is on vacation til the 7th, so we have an appointment with him on the 10th to discuss a likely treatment plan, given the biopsy comes back as we all anticipate it will.  It is possible that he will start chemo on the 14th, and would likely be the same treatment regiment as before, but we will cross that bridge when we get there. 

I am getting induced either this Friday the 4th or Monday the 7th if baby girl does not come prior to that. 

We are doing our absolute best to trust in God's timing.  We do not understand, and don't expect to - so we have to have faith, which is easier said then done.  Some moments we are hit with the reality of it like a ton of bricks and have to pray for strength minute to minute for hours on end.  Other times we are blessed to feel God's peace releasing the weight on our shoulders momentarily. But regardless, we know that God will provide for us in this time, and will carry us when we are too weak to walk.  

Please pray a few specific prayers with us in this time: 

-Pray for a miracle that the biopsy comes back negative for cancer!  We are believing in this prayer right now.  It is unlikely, but that is what miracles are!  Lord have mercy on us. Allow us to be a testament to Him by being living proof of a miracle! 

-Pray for us all to be able to still feel the joy and excitement of awaiting the arrival of our precious daughter. 

-For strength and peace for us and our families. 

As for everyone who so kindly has offered to help us in some way I will be starting a care planner here on CaringBridge.  Last time I had a hard time asking for and accepting help, but this time we are in a whole different situation.  With a newborn and lupus, I know that the ONLY way we will get through this is with God and help.  Once we know what is next I will fill in the care planner (can be found above next to "Photos", called "Planner") and will make a post about it. 

As we are trying to regain joy and excitement in this short period of time before reality really hits I'm going to wrap this up.  Talking, thinking, typing about it gets me consumed in it, and it's just too much to think of right now and we are trying to focus on the blessing of life we are about to experience. 

Thank you so, so much for your support and prayers. God bless you! 

Life after Cancer - Summary of the past 3 years

This (previously drafted) post was supposed to start some updates/journaling of our life after cancer.  So many think that once the cancer is gone that life just gets back to normal.  And for some, that is the case, but for most we still carry it's effects around every day.

I have deleted a large post that was starting to describe it all, but at this point it seems irrelevant.  I think I can sum it up much quicker so I can move on to our current situation back in the Journey of the Big 'C'.

Basically 3 days after we got the wonderful news that Brandon was in remission, my body started acting up dramatically.  I got very sick very quickly, fevers, tremendous body pain, headaches, nausea, and pretty much bed ridden for a few weeks.  Blood work showed something Autoimmune going on, and I was given a burst and taper dose of steroids to 'reset' my immune system.  It worked briefly.  After 8 months of rheumatologists, hematologists, primary care doctors, tests, biopsies and ultrasounds I was finally diagnosed with Lupus in March 2012.  

Ever since we have been playing trial and error with medications to find the right treatment plan so we can live a fulfilling life with chronic illness and pain.  It has been challenging and life limiting to say the least, but maybe some other post I will go into more details of our battle with Lupus.

During that time our roles of patient and caretaker quickly switched to Brandon caring for me.  Yet, the effects of chemo and all the other medications were still taking a toll on his body.

Since completing chemo, Brandon stayed on a preventative treatment called Avastin.  This drug, new to the market in 2006, has shown great results in aiding treatment of Stage IV Colon cancer and some types of Lung Cancer.  Due to it's newness, not many people have been on this medication long term or solely as a preventative treatment, and many of the effects are not known.

Since remission Brandon has been diagnosed with Hypothyroidism and Gastroporesis.  The Gastroproesis causes a lot of GI disturbances and limits the types of foods he can eat, such as no raw fruits or veggies unless pureed to make digestion easier.  Super fatty and greasy foods are also difficult to digest.  He has a medication that he needs to take 30 minutes before meals to aid the stomach in digestion.  We have been fortunate that he has been able to get away with taking it less frequently, except shortly after his Avastin treatments when it typically would trigger GI upset.

So, in the almost 3 years of remission we did our best to live life with 2 chronic illnesses with many limitations that other people in their early 30's don't have.  We prayed about starting a family - a very difficult decision to have to make when you have faced Stage IV cancer and have Lupus.  In February of 2013 we felt God give us a sense of calm to give it a go, and in November we were thrilled to find out we were expecting our first child!

I'll leave off here - and will shortly update specifically on the current situation we are facing with the cancer returning based on a Pet scan done on Friday the June 27th.

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A New Kind of Normal: Life after Cancer - The Beginning

(Originally posted on our CaringBridge site: Written May 28, 2013 1:54pm)

Wow, I can not believe that it has been almost 2 years since I last updated this.  There are definitely a number of reasons why.

First, we were in remission.  This was intended to keep all those who cared informed of Brandon's progress through the disease and treatment. 

Second, we were now navigating a whole new area of life, AC, After Cancer.  The normal life of BC was loooong gone and forgotten, and the routines of During Cancer, DC, were now not needed...so figuring out what AC looked like was similar to learning how to walk again.

Third, as stated in my last post in July 2011, it was then my body's turn to act up and turn on me, leaving me very sick and relatively bedridden for quite some time, and not in any state to update the website.

But recently, Brandon and I have been following numerous other people's battles with cancer, many through CaringBridge, and as one patient recently won a very difficult battle with cancer I found myself so curious as to how life is going for her AC.  This then led to a pressing feeling to get back on here and document the journey after cancer, as many people have privately contacted us wondering how it has been going.

I am kicking myself in the butt for not journaling much at all in the past 2 years.  I was amazed at how much it helped me through cancer, and I'm afraid it could have helped me a lot in navigating the difficult road after cancer, had I actually done so.

I am terrible at consistently writing in a journal, I think because I can't write as fast as I think, and my handwriting gets terribly sloppy, then the joint pain in my hands makes it harder to write and keep up with my thoughts, and I get so annoyed with my sloppy penmanship. 

Yeah...I'm just a little Type-A...

Then, on top of that, I get so distracted with what context I should be writing in.  Should I just be spewing my thoughts randomly onto the page?  Should I be giving background to the thoughts I am having?  Explaining the situation at hand so that the reasons for why I am upset make sense?  Does that even matter, cause who the heck is gonna read it anyhow?  But what if I look back on it someday and it's all just jibberish because I have no idea what I was talking about? <SIGH>

I did try type-journaling for a while.  That helped a lot with the handwriting issues and getting my thoughts out quicker, and it allowed me to edit.  Yeah, yeah - I know, editing is not the point to journaling but I can't help it. 

Regardless, it didn't help the other issues, and it didn't help me to desire to write it.  Type-A people usually find it completely senseless to write something that nobody will ever read.  A waste of time and pointless. Yeah, maybe I would read it someday - but when the handwriting is so sloppy, how could I?

But I did find that I consistently updated this site.  Why?  Probably because there were people who read it because they wanted to follow Brandon's progress and our journey through cancer.  They wanted to know how to pray for us.

But also because it was therapeutic to me.  It helped me to process the situation and organize all the thoughts that were constantly spinning in my head.

Since July of 2011 two things have happened.

One, a Hayslip/Wilkerson family friend gave us the sweetest gift, a photo book of all of my CaringBridge entries of our journey with pictures, scripture, song lyrics and the guestbook entries.  A beautiful chronicle of our battle with cancer.  And I treasure it so much!  It is something I had thought of doing many times, but we were still too close to that difficult time, and I could not yet bare to go back and reread it and experience it again.  But now we have it to look back on, and remember how God got us through, and how we were shaped into the people we are today by that life changing time.

Two, I have been contacted by multiple people in regards to our battles with lupus and cancer.  How did you/Brandon get diagnosed?  What were the symptoms?  What tests should I get done?  How did you/Brandon respond to this treatment?  Did you/Brandon have this side effect? 

To be honest, if I did not have the CaringBridge to look back on, there is a lot I can not remember!  And to this point, CaringBridge only documented our journey through cancer.  And really, only through diagnosis, surgery and treatment.  Just because the cancer is gone, it does not mean our journey has ended.  I wonder if others are curious about what the other side of cancer looks like for us, as I am curious about what it looks like for fellow survivors?

And when asked some detailed questions about my lupus the other day, I realized there are a lot of details to that journey of diagnosis and beginning treatment that are a jumbled mess in my head, and therefore not very helpful for my doctors or those who ask because of their own battle with lupus.  We can thank that to a common symptom called 'lupus fog'. :)

So, this may be more for my own benefit than anything else, but whatever the case, I'm going to take some time to update this site on our journey in the past two years. From Brandon's remission to my lupus diagnosis, to how cancer effected our decisions in purchasing a house, to trying to find normalcy in daily life, and living on the 3 week preventative treatment cycle and it's side effects, to mysterious new debilitating symptoms for Brandon, to more cancer diagnoses in our family, and how cancer effects our family planning choices. 

Yes, we may have gotten rid of the cancer cells, but not a day goes by yet that is not effected by the imprint that was left behind.

Many probably think what I did, that the battle was over and it's back to normal...

WRONG!

I was completely unprepared for the challenges ahead of us.  I am not saying this is everyone's story, but it was ours.  I wish we were the people who finished treatment and left cancer in the rear-view mirror and never looked back.  But our reality was that it has trailed us ever since, sometimes closer than others, and it will forever be a part of our life.

So on to the new chapter to Our Journey: the big 'C',  I'll call it:

'A NEW KIND OF NORMAL' 

A new direction

It has been a LONG time.

I have started this post many, many times, only to just close out the window without posting or saving.  My words were not God-given, my heart not in the right place.  I don't even know what I am going to write today, or if it too will just be typed and let go.

I look at my last post and I don't  know how to skip from there to here, or from then to now.  What is important to share?  Why am I even writing this 'blog' now?  I guess I still don't know, and I really don't know why anyone would read it.

I can tell you why I think this post may actually make it into cyberspace, and why the others didn't.  From a couple weeks into the journey of The Big "C" I felt God's presence so strongly, and I felt compelled to share our story of the process.  Not just what we were going through, but more importantly God's presence and guidance through that season in our life.  As I recently read over the entire 'Caringbridge' website and then this blog I am so happy to see that that, in fact, was the take away of our story.  

So why have I not updated since our triumph over Cancer?  Why did I throw away everything I wrote since then?  Because God was not in it.  

I vowed with everything in me that we would not let go of our minute-to-minute dependence on God if/when we made it through that battle.  That we had been touched too deeply to return to our old ways.  That God made Himself so present that we could never go back to needing Him less.

But I am human.  And I let all too many things draw me away from seeking God in praise, in wisdom and in need.

It has been a long season this time.  From July 2011 until September of this year.  Far too long to be separated from my God.  Now, don't get me wrong.  I didn't pull any Amish 'Rumspringa' type deal!  I did not go explore other religions, and I surely did not loose my faith.

I guess the only way I can explain it is that I stopped pursuing God for wisdom and guidance in my life.  I did not give my troubles to Him and I did not frequently seek Him in prayer, and when I did, it was halfhearted.  The sad thing is that on many occasions I knew that the ONLY thing that would help me in the depths of the depression I was in would be to give it to God, ask Him for help, and be willing to listen for his guidance, and yet I still didn't do it.

But God.  

He waited patiently for me to wake up, buck up and come back to Him, and as I knew all along, He has been FAITHFUL.  He is leading me out of this depression, and leading me right back to Him.  All of my efforts for the past year have been like running in place.  I was not standing still, I was trying so hard to break free, but going no where except towards exhaustion.  Until I finally broke down and honestly asked God for help, and asked Him what do I do?!

And for the first time in over a year, I asked, THEN LISTENED.

'You have to come to me first'.  I heard it loud and clear. 

That's it?!?!  Deep breath.  Moment of self reflection.  Yeah...I guess I have been coming to ME first...

Ok God.  I can do that.  I WILL do that.

And the past few weeks have been nothing like the past 60 some weeks.  And I can only thank God for leading me back home, where I can take this on.

I never thought coming out of Cancer would take me lower than being in it.  I also never thought that the burden we would bear at such a young age would be so heavily weighted by health issues in every direction.  From my long awaited diagnosis of Lupus that I had been suffering from since 2008 and a multitude of other stomach and anxiety issues, to Brandon's preventative treatment side effects, to my mom's now active Non-Hodgekins Lymphoma, to my Grandmother's battle with dementia to my Uncles recent diagnosis of Pancreatic Cancer, to Brandon's Grandmother passing from a rare stomach cancer, and unfortunately the list goes on, both on my side of the family and Brandon's.

I don't know why God has allowed these challenges in this season, but I do know that God directed me to try to do something with it.  I still don't know what, but again, I feel directed to write about it.  I don't know why, because frankly I don't know what I am even supposed to write, but I do know that I am not feeling lead to delete this post as I have done every other I have tried to write since July of last year.

So, I'll keep on putting words on this screen til I feel God leads me to do something else more productive with my time and this experience. :) 

Thanks for reading, and I hope your time did not feel wasted, because I truly don't know if this pile of words is of any worth.

Blessings,

Christina