In the Beginning

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The best thing about Dave’s first post-surgical hospital stay was that it was over a weekend.  The hospital was quiet, and he was given a private room.  (Honestly, why are there semi-private rooms?  Is there ever a time that you might be at the hospital where you would think a semi-private room would be a good idea?)  The first night Dave was on the Spine Unit because of the full to capacity situation on the Surgical Telemetry floor.  The only issue with this was that the nurses weren’t used to dealing with colon resection patients.  Luckily the next morning a room became available, and he was moved.

The worst thing about his hospital stay was that his blood sugar was out of control.  His numbers were sky high, and the prescribed sliding scale was doing nothing to remedy the situation.  Dave was extremely agitated and wanted me to sneak his insulin into the hospital.  It was hard for me, but I stayed firm and refused to do this.  This resulted in him kicking me out of this hospital room on a couple of occasions.  As much as I hated to see him so anxious, I was worried that in his hazy state, he would give himself too much insulin and then bottom out.  As is the case in many things in life, it is connecting with the right person that gets the job done.  This person was a nurse on the floor who told the on call Internal Medicine doctor that Dave needed to control his own insulin.  With that, the doctor changed his orders, and it was much smoother sailing from that point out.  I would say that this setback definitely affected Dave’s recovery initially.  As quickly as he did recover, the undue stress was unnecessary.  I can’t understand why in this day and age a “one size fits all” prescription would still be used.

Part of the recovery process is getting up and walking around in order to get your system back in gear.  We made many laps around the 7th floor as did Dave’s parents and his sister too.  We quickly learned that having a cart filled with yellow gowns, gloves and masks outside your room was a bad thing.  It meant MRSA or some other highly contagious and undesirable malady was afoot.  We gave those rooms a wide berth as we passed by.

The doctors were ready to send Dave home after a day and a half.  I remembered hearing that if you were going to get an infection, it would generally occur within 48 hours, so I pushed for him to stay one more night.  That night passed without incident, and we were home Monday afternoon.

xoxo

Robyn

read parts 1 & 2 here – https://embracingtherollercoaster.wordpress.com/category/in-the-beginning

The VMAs, Tanked, and Shower Curtains

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Each one of our kids has had the opportunity to do a special trip with their dad.  Samantha and Dave flew out to LA for the Jackass 3D premiere.  Sam walked the red carpet looking much older than her years in her blue mini dress.  She even got hang out with the cast at the after party.  Grant and Dave went to San Francisco and had a blast touring Lucas Arts with the incomparable, Joe Ching.  Grant got to experience video game production from the concept up.  This time it is Parker’s turn.  She loves the show Tanked on Animal Planet.  Dave’s brother is having a tank put in his house and invited Parker and Dave out for the event.  She is having the time of her life.  As a bonus, they were able to attend the VMAs on Thursday night.  Parker and Dave hit Universal Studios on Friday and have also spent time hanging out with Brett and Wayde from the show.  This is a trip she will remember for the rest of her life – spending time with her dad watching Pink fly overhead, riding the Simpson’s ride, chatting with Brett about the Scribble Angel.

You might be wondering what I have been up to while they live the rock star life.  Well, I’ve replaced mildew-y shower curtains and mats, topped off the oil and filled the tires in the cars, and cleaned out Dave’s dis.gust.ing car.  I’ve finished my “virtual opening” tasks for work, planned, and created a slideshow to share with my students.  Somehow I’ve managed to get myself roped into volunteering for the presidential campaign. I have also been completely wrecked by the Stand Up to Cancer program which aired last night.  https://www.standup2cancer.org  100% of your donation goes to cancer research.  Their “dream teams” are doing incredible innovative work.  The success stories are so hopeful, but the losses are so completely devastating.  Will you give?

xoxo

Robyn

In the Beginning

ImageWhen we left off, our hero had just received the shocking and unexpected diagnosis of stage 4 metastatic colon cancer.  After a grueling 48 hours, we met with the colon surgeon that Dave’s gastroenterologist had recommended.  His office was this shabby dark space near Fair Oaks Hospital.  When we first saw him, he was yelling at one of his staff.  My first impressions was “Geez.  This guys is old. How is he going to do the surgery?’  Once we sat down with him though my mind was put at ease.  He could do the surgery laproscopically.  It was straightforward and the tumor was in an “ideal” location which meant it could be removed and the two pieces of colon could be reattached eliminating the need for a colostomy.  He took Dave into a separate exam room.  When Dave returned he looked a bit shell shocked and told me he could “cross going to prison off his bucket list.”  Then this fine doctor dropped the news on us that he was going on vacation for two weeks.  I thought Dave was going to jump over the desk and strangle him.  Luckily, one of his partners could work Dave in the next week.

Things always work out for a reason, right?  It turned out to be a good thing that Dr. Otchy was going to be gone.  His partner was great, and it turns out that his wife is one of the kids’ pediatricians.  Dr. Stern was exactly what we needed.  Dave had his surgery on Friday, August 12th.  We were told it would take about three hours.  When three hours came and went, I got very nervous that they weren’t able to do the surgery laproscopically after all and had to open Dave up.  Turns out the laproscopic surgery takes longer than a traditional open surgery.  Dr. Stern was able to remove the tumor and surrounding lymph nodes which would be sent off to pathology to be tested.  After a long day, Dave was sent up to his room to start to recover.

xoxo

Robyn

*The surgeon on the left in the photo above is the wonderful Dr. Lawrence Stern.  

**To read the beginning of our story, start here . https://embracingtherollercoaster.wordpress.com/2012/08/02/in-the-beginning

In the Beginning

As we near the one year anniversary since Dave’s diagnosis, I thought I would share how our journey began.  I promise not to get too graphic, but if you are easily grossed out, then you may want to skip today’s entry.  I think it is useful to know what symptoms he had, so that you can be aware of what to look out for or mentally check off with relief that you are not experiencing the same.

In June of last year, Dave mentioned that he had been noticing some blood after he went to the bathroom (enough said).  We both thought it was worth getting checked out, but we weren’t overly alarmed.  He made an appointment to see a gastroenterologist a few weeks later.  The doctor told him that it could be anything from hemorrhoids to cancer and that he would need to have a colonoscopy to find out.  That was scheduled for mid-August.  In the meantime, Dave started having pretty severe abdominal cramping so his appointment was bumped up to early August.

We got up bright and early on Wednesday, August 3rd.  I was struck by how many men that looked to be Dave’s age were also at the center for colonoscopies.  Why is testing not started at an earlier age?  Dave’s doctor came out afterwards and explained to us that he saw a tumor on the scope that was all but blocking Dave’s colon and that he had been doing this long enough to know it was cancer.  I appreciated that he already had an appointment set up for Dave to see a surgeon that Friday.  He also had all the paperwork so that Dave could have a CT scan the next day.

I can’t say that I was entirely shocked at the news.  I had done a quick google search, and the only diagnosis that matched Dave’s symptoms was colon cancer.  I hadn’t shared my internet research though since I didn’t want to stress Dave out with my armchair doctoring.  He was floored.  It was too much to comprehend.

We were both stunned the next day when his CT scan revealed that the cancer had already metastasized to his liver in two or possibly three spots.  Suddenly we seemed to be moving at hyper speed.

xoxo

Robyn

Why I Hate Driving

There is the usual list of grievances: gas prices, traffic, that blasted “check engine” light.  (Dave’s just came on again.  UGH.)  Those are all annoyances that can be stressful, but the real reason I hate driving is because I can’t escape from my thoughts when I am in the car.  I think and over think when I am driving.  I don’t even have to be alone.  The kids can be nattering all around me, but I am lost in my head.

Today’s thoughts centered around Dave’s appointment this morning.  True confession – I don’t attend all of his appointments with him.  I go to all the biggies but for the routine ones I tend to bow out.  Dave prefers it this way.  He worries that he is wasting my time by having me sit there with him and that makes him anxious.  So, to keep the peace, I go when I am needed.

This morning was a routine appointment.  His blood work was good.  There is a tumor marker (CEA) that can indicate when something is amiss.  This is the number that had elevated some and was the reason Dave had the scan in April which revealed new tumors.  Dr. Spira has told us that it is not a great test, but it is another way to keep an eye on things.  Today’s CEA was back to normal.  Great test of not, this news feels celebration worthy.

Dave told me that he asked how long this cycle of chemo would be.  He was told it could be indefinite.  My heart sank when he told me this because I had already figured that out but was trying to protect him.  Chemo is grueling no matter what, and I didn’t want Dave to have to think about it going on forever.  When we went to Hopkins they told us that stable disease would be a good thing.  That Dave’s cancer was aggressive.  So it makes sense that as long as the chemo is keeping the cancer under control that they are going to keep giving it to him.  I worry about how disheartening this kind of news can be.

Since I have been in the car a lot today, I’ve had plenty of time to refocus my thinking.  I hope that I can keep Dave in this mindset too – that as long as the chemo is working, the cancer is not growing or may even be shrinking.  There are new trials and ongoing trials which means more opportunities for him.

I know that I will be continuing to call on our village for help during those times when all of this seems frustrating or demoralizing.  Distractions are welcome!

The Kids Are All Right

The most common question we get after all Dave’s particulars have been shared is “How are the kids doing?”  Amazingly, they are doing just fine.  I think they are doing so well because the dad they know and love hasn’t really changed in their eyes.  He is still active in all their events.  He is still working full time, exercising, gardening with Parker, wrestling with Grant.  He still cracks the same goofy/crude/odd jokes.

It was hard to decide what to tell them.  In fact, in this whole process, it was the one thing on which we didn’t completely agree.   I am of the school that you tell them everything (within reason, of course) because I want them to trust that what we are telling them is the truth.  Dave wants to protect them from anything and everything.  If there is one single thing that he is angry about, it is that the kids have to go through this.  He has said it repeatedly.  He is not worried about what might happen to him, but he absolutely hates that the kids have to deal with this.  He is a good, loving, protective dad.

So, in the end, we told them each what they could handle.  With Parker, we didn’t use the word cancer since her pet rats died of cancer.  Before Dave’s first surgery, we talked to Samantha and Grant separately from Parker and explained the game plan.  That Dave would have surgery to remove the colon tumor, chemotherapy, more surgery to remove the liver tumors and then finish up chemotherapy.  Grant accepted the entire conversation at face value – Dad said everything was going to be okay, so it is.  Samantha took it a little harder.  She asked me if Dave would lose his job.  She asked me if he was for sure going to be okay.  The first question was so much easier to answer than the second one.  I told her that he wouldn’t lose his job.  That he could take some time off, if he needed to, and they would still let him come back.  And I told her that nothing is ever “for sure” but that we were going to do everything the doctors said to do to help him get better.  And she accepted that.  We all did.

And everything went according to plan.  Except shortly after stopping chemo, there were more tumors in new locations.  So for a while we didn’t say anything.  We decided it was best to have a plan before we said anything to the kids.  We didn’t know if Dave would be having surgery, radiation, chemo or some combination.  We haven’t used scary words like recurrence.  The kids know that the first round of treatments didn’t get rid of everything so that Dave is back on chemotherapy.  There is not much more to say because we don’t really know more than that.

The only time they have been forced to think about any limitations that Dave might have was when we went to Disney World.  I talked to each of them and reminded them that Dad was likely to be tired since he was having a treatment right before we left.  I asked them to think about what they most wanted to do when we were there because chances were we wouldn’t be able to do everything.  They were amazing.  I took them swimming the first night we were there, while Dave rested in the room, and they planned out the whole week.  They didn’t argue.  They compromised.  It was important to Samantha that we stay together as a family and not split up into groups.  I don’t think that I have ever been more proud of them.  They are incredible, kind, smart, loving people.

xoxo

Robyn

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Cancer for Dummies

ImageWe have been at this cancer thing for almost a year now.  As we have traveled along the twisty path, I have formulated a sort of Cancer for Dummies book in my head.  Perhaps a more apt name would be Cancer for the Previously Unaffected.  Ideas usually pop in to my brain when I am alone in the car, and I spend the remainder of the drive pondering them.  There is the list of “Things I Wish People Wouldn’t Do or Say” and the other list of “Things I am SO Glad that People Did or Said”.  When I think back on my own actions, I have probably done or said all of the things on the first list and done or said precious few on the second.  Now I know.  Perspective is a powerful thing.

My least favorite question when people find out about Dave’s cancer is “Did they catch it early?”  Because the thing is they didn’t.  Once this question is floating out there, I begin to feel uncomfortable because I know I am about to make someone else uncomfortable.  So I give a brief response along the lines of “Unfortunately they didn’t.  It had already metastasized to his liver when they found it.”  Then there is an awkward silence followed by me feeling the need to explain about risk factors and routine screening and why Dave hadn’t been screened earlier.  Suddenly I am the living blathering wikipedia of colon cancer information encouraging you to get a colonoscopy when you mention your family history.  And I mean it.  Have you had one?  You should.

xoxo

Robyn