What is this?

What is this? I don't really know, other then a continuation of my updates and writings that I was sharing previously on Caringbridge of this journey through cancer and now widowhood and single parenting.

Maybe it won't end up being anything at all, or maybe it will be a glimpse into my heart, my life, my current situation, my testimony.

Whatever it becomes, I am touched that you are interested.

Tuesday, April 12, 2011

...our journey- the 'big C' (with thoughts)...

I wanted to post our journey through the 'big C' on here, but wanted to add some other perspectives and thoughts and tid-bits that we have gotten from God in addition to just the story.  I have added to what I pulled from the Caringbridge website, and have put it in italics, for quicker reading for those who don't want to read the whole thing all over again...

The beginning

Brandon had been having digestion/stomach issues for years and years, loosely diagnosed as "Irritable Bowel Syndrome" by many doctors.  

In 2010 he started having severe symptoms on our anniversary cruise in May, landing us in the infirmary of the ship with such severe lower abdominal cramping it was causing him to vomit. Because of the regulations and fear of spreading a stomach bug, we were quarantined to our room for a day and a half until we arrived back at port.

We thought it was minor food poisoning from food we ate in Cabo, until it happened again and again.  After seeing many doctors including GI docs, and an Internist we were again told "IBS", even after being explicitly detailed about the extensive family history of cancer.  (9+ cancers in 4 immediate family members).  

Both of us at this point were so frustrated with doctors, and really had lost faith in their abilities.  But yet, at the same time because we were getting the same opinion from many doctors we started doubting ourselves.  But, unknown to me at the time, Brandon who is great at research, started plugging in his symptoms into web searches.  And what was the #1 'web diagnosis'?  Cancer.  He was fairly certain at this point, but didn't want to alarm me yet, so he kept it to himself aside from discussing his thoughts with his dad, but encouraged me help him get in with a doctor sooner than later.  How he held that in for weeks, I don't know.  He is a strong man, that is for sure.  


Finally, it took me getting angry and yelling at a few patient care supervisor's to get a doctor to listen and do the tests.  First was the CT scan, which showed to be clear.  

At this point, we were less than a week away from going on a 2 week 35th anniversary cruise with my parents to Hawaii.  Really, God used this cruise to save Brandon's life, in my opinion.  Due to what happened on the previous cruise, I had momentum to press the doctors to do SOMETHING before we left, specifically because we were sailing round-trip from LA, with 4 days at sea over the Pacific Ocean each way-totaling 8 days where we would be limited to the health services on the boat, which are sufficient, but far from extraordinary, and not enough to calm my anxiety over it.  At this point I was convinced that he had some kind of blockage, I just was unaware of the extent of it.  

When the CT scan came back clear, I was calmed slightly.  One part of me trusted the doctors, and the other part was screaming 'Don't listen! There is more to this!!!'  We asked what the next step would be, and our doctor suggested doing an endoscopy (a look at the stomach, and upper GI system via a camera down the throat).  I pressed her for a colonoscopy too, which she really thought would be fine to do later on, so we got the colonoscopy scheduled, but not for 6 weeks. 

We went on the cruise, and for those of you who have been, you know that it’s 90% about eating, one part that we really enjoy, 5-star food and service INCLUDED in your ticket, so steaks, steaks and more steaks in my mind!  We usually come back 5lbs heavier too.

This cruise was different though.  We went in October, a great time to go to Hawaii, but not necessarily cruise to Hawaii due to the demographics of who takes a 2 week cruise in October…..seniors.  And I’m not talkin’ spring break!  My parents even felt raveningly young!

So, since the demographic is so heavily weighed in one direction, the ship caters to that, making the food more bland with less variety and the activities on the boat were far different from what we normally experience.

Due to this, we didn’t enjoy the food to the extent that we normally do, and that was a blessing from God 100%, and I will explain that more below.  So we returned home, about the same weight as we left, and that was a first!

Next was the colonoscopy.  It was Wednesday November 3rd.  As we were called back by the nurses to get the results from the doctor I had this weird confidence that everything was ok.  We were told by so many doctors on so many occasions that 'he is too young for colon cancer', so I was completely unprepared.  


"There is a large mass completely blocking the colon.  I was unable to even pass the scope past it.  We have taken samples and are having them sent immediately to pathology.  Since we can't pass the scope, you run the risk of a bowel obstruction or perforation and my preference would be to admit you to the hospital right now and keep you under surveillance until we have the pathology results back, and we have them making a special trip here to pick it up tonight so we don't have to wait until the morning."

Almost a complete blockage, and a tiny scope could not pass.  We were shocked, but in a way, we were finally getting somewhere, and we were reassured that we indeed, were NOT crazy.

Our hearts dropped though, a mass that large, and the doctor want’s him in the hospital due to the risk of it rupturing, which is incredibly dangerous.  As we processed the information we realized how much of a blessing the bland food on the cruise was.  Had we eaten like we normally do, there is a very, VERY good chance that we would have had a life-threatening serious problem on that ship, with no immediate emergency services.

At times, I put myself back there, and start to play out what that would have been like, and I just praise God for His hand in bringing us through that, when we very well could be writing solely about that experience at this point.  He works in some obvious ways, and in some very round-about ways, but the point is that He is ALWAYS working!

We were able to go home that night with promises of bed rest and a liquid diet until our appointment with the doctor at 4pm the next day, and any suspicious discomfort to head directly to the ER.  We left being told that it most likely was a severe case of either Chrone’s Disease or Celiac Disease, but there was a small chance it could be the 'C' word.

We didn't sleep much that night.

After a long wait at the doctors office as our doctor demanded the pathology results to be finished she came in with almost no expression on her face, as I assume they try to learn to do so that their words are heard first.

"It's a cancer".  I remember staring at the pattern on my shirt as I let that sink in.  A shirt I have not worn since.

BAM.  That's when life stopped.  Things started getting hazy, and suddenly we were thrown head first into all this terminology we never wanted to have to be familiar with.  Brandon is in the less than 1% chance of having colon cancer at age 29.

We went home in a daze.  I was in complete shock.  Brandon had expected this.  We made the calls and texts necessary so our friends and family could start praying.  It became real the first time I put it into words to my friend.  ‘Brandon has cancer.’  I remember looking at the text before I pressed send.  ‘Brandon’ and ‘cancer’, right next to each other.  No, this is not true, no, it can’t be, no, we are in our 20’s, no, no, no , NO!

We got home and just went to the sofa, and Brandon held me.  I have never cried so deeply before in my life.  Brandon reassured me that everything was going to be ok.  But he knew.  He knew that in order to have the symptoms that he was experiencing, it was pretty far along, most likely a stage III or IV.  But again, he kept that to himself.

We held each other tight all night, and cherished this last night before everything in our world would come crumbling down…


Next was emergency surgery.  We had to check in to the hospital first thing the next morning, Friday November 5th, with colon resection surgery scheduled for Saturday morning.

After the successful surgery, our absolutely wonderful surgeon met with us to tell us his findings.  The tumor was about the size of an egg, and he felt around the remainder of the colon which could not be checked during the colonoscopy, and he felt no other masses.  He also felt the liver and noticed no masses there either, thank God.  They removed 23 lymph nodes near the tumor to be biopsied.  Based on how the tumor was growing, he anticipated that it was a Stage II cancer because it had started to grow into the muscle lining of the colon, and none of the lymph nodes removed were tumorous or enlarged, but the pathology results would confirm that, but because of the weekend we would not know until Tuesday.

Ok, so stage II cancer.  We can handle that, we got this.  I started to let that settle in.  At least it is gone.

Photos that I turned into coloring book pages, something
that I spent quite a lot of time doing while in
the hospital.  I picked some of our happiest memories
to color and put on the walls in the room.  This one
is from our anniversary cruise at a port in Mexico.
But watching my amazing husband lay in the hospital bed was excruciating.  I was far from a good care giver, even to the point of throwing a bottle of medicine to/at Brandon once b/c I felt he was being to ‘whiney’ about needing it.  I know, I know…not my best moment. 

My mom had flown out to be with me.  I didn’t want to burden anyone, so I told her not to worry about it, but she came anyways, and I thank God for that.  I didn’t know what was up or what was down.  I was so stressed I became completely indecisive.  Interacting with anyone was nearly impossible.  And my anxiety sky rocketed.  I lost the ability to eat and in that first week, lost nearly 5 pounds on top of the weight I had recently lost because of my own stomach problems.  I now know that I was in shock.  It’s amazing what your body does to ‘protect’ itself from itself.  My brain shut down, and I couldn’t even really drive well.  I no longer just knew where to turn, I had to think really hard to get to places that were second nature.

I never expected in my wildest dreams that driving to and from Lutheran Hospital would now be second nature…

Recovery from major surgery was tough on Brandon, but he did it without complications.  The whirl of doctors, nurses, oncologists, doctors assistants, cancer support groups and others was dizzying.  

Tuesday finally came and the surgeon explained that unfortunately 17 of the 23 lymph nodes tested positive for microscopic cancer cells. With lymph node involvement that took us to a Stage III Cancer.  Because of the large number that tested positive, that then took us to a Stage IIIb.

The news was shocking.  It seemed to us that every hope we had been given at each increment of this journey thus far had been crushed with worse news than they expected EVERY TIME.  We didn't know how much more we could take.

Our next step was to just heal from surgery for 3-4 weeks, and have a PET scan which will show if there are cancer cells anywhere else.

One of our favorite memories, and excursion in Mexico
on our anniversary cruise where we got to make
authentic home made salsa and guacamole
then learn to salsa dance.
The time in the hospital really sucked.  Brandon had a major surgery, and recovering from that is slow. 2 days after surgery they encouraged him to try to stand up.  His brother David and cousin Ashley were there.  I saw how painful every move was for Brandon just when he was laying in bed and needed to adjust, and I panicked.  I asked my mom if she wanted to go back to the house briefly to get cleaned up since the guys were there with him, and we left.  I didn’t think I could handle seeing him struggle so much, so I had to leave.

When we got back I asked the guys how it went, and they informed me that it didn’t go too well.  As he tried to stand his body just couldn’t handle it well and he got really dizzy, nauseous and broke out in a full body sweat, and didn’t get to stand for more than a moment.  I was glad I wasn’t around to see that, I kept thinking.

For a little more background info, I have a phobia about vomiting that goes back to my childhood, and I have struggled with it severely the rest of my life.  Prior to this ordeal I had recently started discussing it with my therapist to start working towards healing, but I had not yet made much progress.

Once the guys left I asked Brandon how it went, and he expressed that he wished I was there.  I felt a weight on me, and utter panic.  He wanted me there.  I really needed to be there.  This is my responsibility as his wife.  But I can’t do this.  I’m not made for this.  My body can’t handle the stress and pain of seeing him like this, how the hell can I be strong for him?  I can’t do it!

A camping trip in Buena Vista with some of our
closest friends; Jess, Steve (doggie Mariah), David,
Justin, Shane, Brandon and I.
But God.  Once I came to terms with what this was, and what my role was, He gave me miraculous strength and endurance that I never knew I had, and had never displayed before.  Thankfully during this time of adjustment, my mom was right there by my side to be my strength and lead me into my new role.  I now completely realize that this transition never could have happened as seamlessly without my mom’s presence and guidance.  My sister-like friend Haley also played a huge part in building me up and anticipating my next need before I could even know what I needed or how to ask for it.

During this time in the Hospital our community of friends rallied around us too.  They set up a care calendar, and friends Veronica & Anna-Lisa scheduled an impromptu prayer night at Veronica’s house attended by all of our friends filling up her house.  They prayed fervently for us, made us posters to hang in the hospital room and praised God in worship.

We were released from the hospital after about a week, and went home to recover.  Chemotherapy was definite, so 2 weeks later we had surgery to insert a chemotherapy port just below his collarbone.

During the recovery time we just did everything we could to pretend it wasn't happening, all the while being crippled by fear of what the PET scan would reveal.  We could not get to a place of acceptance until we had those results, so the mental torture was debilitating because of our experience thus far with bad news.

This healing time was a blessing.  Momentarily we got to live without Brandon having ‘stomach’ issues.  And we came to terms with what we were dealing with.  For me though, I kinda went into denial.  I accepted where we were and gained confidence about this battle, but between surgery and treatment is the calm before the storm.  We were re-assured by the oncologist that treatment for colon cancer is very well tolerated, and most people don’t even miss work.  Most likely we would have 6 months of treatment and then done. 

I can handle that…we can handle that.  This won’t even be too disruptive to our lives, and then it will be over.  I guess that is a defense mechanism, but so be it, the 3 weeks before the PET scan were better because of that viewpoint that I had.

More Testing

On Monday December 6th we had the PET Scan, and had another week to wait while people and computers compiled and analyzed the scan images.

When Brandon got the call on Friday, days before we were to meet with the Oncologist, we knew it wasn't good news.  They found 3 lymph nodes in the right abdominal area that were highlighted on the scan.  Because the cancer had metastasized or moved/progressed towards another organ, and was not near the original site of the tumor, we were then re-categorized as a Stage IV.  Because of the  few lymph nodes involved we were happily given the 'A' on the end of it.

Wow....my 29 year old, otherwise healthy, active and super athletic husband has Stage IVa Colon Cancer.  I could not believe this was our reality.

So here are the blessings we have found in all of this.  There is a slim chance that those 3 lymph nodes were just inflamed for some reason, and that there may be no cancer in them, but because of the location of them, and the fact that they do not appear to be tumorous, it would be exploratory surgery to try to find and remove these three little lymph nodes.  Our surgeon and oncologist met immediately to discuss the plan of action and agreed extensively that the risk and delay in treatment to search for something that may not be found is too risky, and to just proceed with Chemotherapy immediately.

This news was utterly devastating.  How could he have stage IV cancer?!  He is only 29!  How is this our reality?!  We just had accepted the stage IIIb news, and now we have to come to accept a stage IV cancer?!  Why God?!  Just kick us while we are down!  How much more can we take?!  From IBS to possible extreme case of Chrone’s, to cancerous mass and surgery to likely stage II diagnosis, to stage IIIb diagnosis and NOW stage IV diagnosis?!  Just keep piling it on, God!  What do You think we are made of iron?  Don’t You realize we are only human?  What did we do to deserve this?!  Are we going to make it through this ?  How long will this effect us?  What else can go wrong?

The questions you throw at God just circle in your head endlessly.  The anger, frustration and devastation sink in to every thought.  Cancer is everywhere.  I would look at the hill outside our window and it was covered in cancer.  The blue sky was not blue, cancer took it’s radiance away.  Watching tv and listening to the radio was maddening.  The superficiality of songs, the trivial dialogue between characters, the happy disposition sickened me. We have cancer, and to try to be distracted with such nonsense of the crap on TV now only made it worse.

I think we watched a lot of children’s movies…

But we would just keep on keeping on, awaiting the next hurdle of chemotherapy.

Clinical Trial

We were then given the option to participate in a Stage IV Colon Cancer Clinical Trial that was testing the effects of 2 drugs, Avastin and Erbitux.  We went through many, many blood tests, CT scans, Xrays and paperwork, only to find that Brandon was in the low percentile of people that Erbitux is not effective on, leaving us frustrated that all that time and money was wasted because we could not participate in the study.


Finally, on Thursday December 23rd we started our first Chemotherapy treatment of Folfox with Avastin.  He would go into the Oncologist's office on day 1 and be there for about 5-6 hours getting the first batch of chemo.  They would then connect him to a take home pump that would continually pump the next dose through his port for the next 46 hours.  On mid-day of day 3 we go back into the office to have the pump disconnected.  Then on day 4 back in to get a Neulasta shot (white blood cell booster shot). Thankfully our Oncologists office is 3 minutes away-Thank God!

We were told by our doctors that 'this treatment is very well tolerated, and most patients don't even miss a day of work while in treatment'.  From the research that Brandon had done, we were expecting that day 3 and day 4 would be the worse, with a cumulative effect making it last longer as he got further into treatment.

Day 1 and 2 weren't too bad.  Uncomfortable, sensitive to cold and fatigued, but we were still able to somewhat enjoy Christmas Eve.  

Day 3 though started hell on earth for us.  The nausea and vomiting were so severe that he could not move, could not talk, could not eat or drink.  Needless to say, Christmas sucked.

Day 4 got worse, and by day 5 it was still getting worse.  Around 1am that night we landed in the ER.

After bags of IV fluid, lots of nausea meds and pain medicine, Brandon was on the mend!  it took many, many days to recover from the first treatment, with maybe 1 decent day before having to start the next round.

This experience scarred us.  We were terrified about what the remaining 11 treatments would be like.  This is what they call TOLERABLE?!  We felt completely blind sided.  WHY was it like this?  This is not what the doctor said it would be like!  At least if we had known the torture Brandon and I would endure, we could have been more prepared mentally and spiritually.

After returning from the ER we went and stayed up at Brandon’s parent’s house, so I could have a break and actually accept the help that I needed. 

Watching my wonderful husband suffer so horribly and for so long was traumatizing.  Those 3 days were absolutely horrible.  I couldn’t be in our house.  I started having mild panic attacks just being in there.  The walls were closing in and I thought that if we went back there, he would start getting sick again, and it would all happen again.

I think we stayed at his parent’s house for 5 days, then headed home.  The feelings were still fresh, but we were much better than the last time we were in there at least. 

More testing and Procedures

In the recovery week we also had a follow up colonoscopy and upper endoscopy.  The colonoscopy was performed to visually check the remaining part of the colon that was not able to be checked the first time.  Our doctor found no pollups or anything suspicious in the remaining part of the colon, but did find that the scar tissue at the incision site was severely constricted, with an opening only the diameter of a woman's pinky finger, about 10mm. We would have to set up a dilating procedure to stretch the scar tissue back open.  Because of the situation, she anticipated that it would take multiple procedures to stretch it to the maximum of 20mm, which is still quite narrow for a colon.

Thankfully, the upper endoscopy was clear, dissolving our worry of stomach or throat cancer.

Finding that we now needed to have routine dilating procedures, which involved colon prep and anesthesia during our recovery week felt like another kick in the stomach.  Another thing to take away the few good days that we had.  Another doctor to see, another hospital facility to go to.  But it had to be done.  God, when can we be done?!  When can this all be over?!  And having to realize that it had just started… 

In between treatments we had 2 dilating procedures that were successful, and have significantly improved Brandon's day to day living, significantly decreasing the nausea he was having almost constantly.  We will have to continue possibly monthly dilating procedures to maintain the stretch in the scar tissue, any pray that we do not need a corrective surgery in the future.

More Treatment

The anxiety and anticipation of the next treatment was debilitating.  The thought of going through what it was like the first time again was just insane.  We met with the doctor's assistant and got some different meds, as well as adding some new pre-meds and getting IV fluids on disconnection day, and felt a little more confident to start the next one.  I mean 3 pills costing over $400 better work, right?!?

Treatment #2 went a bit better.  The new nausea meds helped, but it still wasn't what we would call 'tolerable' because he still could not eat, drinking was difficult, he could not move without feeling nauseous and it took over a week to start feeling better.

Genetic Counseling and another Diagnosis
In this time we were also meeting with a genetic counselor to discuss the possible genetic diseases that could be a factor in this early age cancer.  In between the first and second treatment we were told that Brandon does have a hereditary genetic mutation called Lynch Syndrome.  Basically it's a problem in the DNA that does not allow the body to fight the rapidly dividing cancer cells, as most people's bodies can.  This explains the early age colon cancer in both Brandon and his Aunt, the early uterine cancer in his mom, the early and multiple cancers in his maternal Grandmother and most likely the breast cancer in his above mentioned Aunt that was diagnosed the same week as Brandon.  

So what does Lynch mean for us now?  Well, it means that if you are a carrier of this mutation (50/50 chance of it getting passed on), you have over 80% chance of getting colon cancer, especially at a very young age, and higher likeliness of other cancers such as stomach, liver and others, and in women also uterine and ovarian.

It sucks, but one good thing about it is that we know where to look for it and screen for it in the future.  And now the family can get tested to see who has it and is at risk and hopefully PREVENT this from happening in the family again.

This news was more or less expected on our parts.  Really we were just looking for confirmation and to know exactly what genetic mutation we were dealing with.  But like I said above, at least we know where to look in the future.  Still it felt like another kick in the stomach.

Treatment Again
Once that sunk in we had to be ready for Treatment #3, and we met with the doctor again, and this time reduced the dosage of his chemotherapy by 10% as well as added some additional drugs to the cocktail with hopes of a more tolerable treatment, and thankfully our prayers were answered.

Brandon was able to eat, and move, and talk during his third treatment.  it was such a blessing.  I think I actually said 'Thank you God, Thank you God, Thank you God' hundreds of times that week.  By no means was it a walk in the park or anything like that, but for the first time it was 'tolerable'.  And it gave us hope for the next treatments, that maybe, just maybe we could catch a break.

This point was a breath of fresh air.  It literally felt like I could see things clearer and could view our life further than in 1 week segments of treatment and recovery.  We could actually plan some things to do in recovery week.

We automatically agreed to our next bible study with friends, a women's one & a men's one, held the same evening, just at separate places, every other week on recovery week.  We both looked forward to some time to explore our faith deeper and fellowship with our friends, which at this point was practically non-existant.  And, being the planner I am, I was bursting at the seams to plan something!

It had been such a traumatic few months that I even had a hard time interacting with people at all.  Just talking with girlfriends was difficult.  My ability to gracefully have a discussion was straining.  I could only really say what was on my mind, I struggled with anything that was not a direct agreement with someone else, lost my train of thought easily and could not remember what we just talked about.  My thoughts were choppy, my attention was fleeting and I became quite self-centered in conversation.  I practically lost the ability to relate to anyone and anything that was not cancer.

But God has helped me day by day to restore the damage done and the struggles of dealing with Post Traumatic Stress Disorder.  This was very difficult for me to deal with, as I have always had an easy ability to talk, see many sides to any situation, and just think clearly, but PTSD simply robs the core of you-from you.  And loosing yourself in the midst of loosing so many other things is a feeling I have not yet been able to put into words.  When you are in the middle of it, it seems you will never get out of it, never get back to normal, never find 'you' again.  

But God will use this for something someday, and that is my main encouragement to break free from these chains and conquer what comes through this situation.  I just hope that I get to see some of the blessings that come from this 'curse'.  And from your wonderful encouragement, and people I know and don't know, sharing with me how this or that has spoke to their situation, I am lifted up in God's faithfulness that He will shine light on everything dark.

(to be continued w/ recent updates in next post)

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