A common end to an uncommon summer

We ended the summer the way we always do: at the Shawano county fair. In some respects, today was like any of the previous Labor Days. The girls rode rides, we looked at the big tractors, and watched the demolition derby. The rest of the weekend was filled with swimming in the Red river and walking the woods. Looking at us you probably wouldn't have guessed that anything was wrong. The girls seemed happy and I didn't have any breakdowns.

But this summer was very different since Jen's no longer here with us. It was a season of pain and change.  It was anything but normal for 99% of it.  The girls were gone for several weeks at a time.

There were stretches where I had no idea what to do with myself. Or more exactly: I had plenty of plans but when the time came I drifted like a boat without a keel or rudder.  I would come home from work, say “I’m too tired to start _x_” and flop down on the couch.  The next thing I know it’s 2:00am and the alarm is going to go off in 4 hours. There was no one there to call out the bad behavior or to say “snap out of it!”  So I did nothing other than feed (poorly) and bathe myself, and get to work.

Looking back on this summer, I'm amazed we got through it. I vividly remember not being able to sleep for days straight because I didn't know how I was going to have someone watching the kids all summer. I was so anxious, and I didn't know how we were going to make it through all the events and festivals as a family without losing the “traditions” we had established.

Keeping these “traditions” is probably the single greatest source of my anxiety.  If you haven’t noticed, I’m completely a creature of habit and forecasting.  My very nature sees a void, creates a structure, and determines milestones.  The fact that I've lost my wife and life is fundamentally changed doesn't seem to make a difference.  There’s still a part of me that wants to keep everything the same.  Something that, above all, wants to keep it all the same for the kids… Stupid really… now that I sit an examine it.

So here I am, 1am the morning of day 1 of the school year, and I can’t sleep.  A big, fat, plump school year sits before us.  Full of potential.  Full of potential issues.  What happens? Who knows?  Will we make it thought? Of course we will.  I just need to approach it like the unscripted adventure it is.

D (Diagnosis) Day

Saturday June 1st was the 1 year anniversary of Jen's Stage 4b lung Cancer diagnosis.  Like I've said before, it was on this day that Jen and I knew the totality of it all.  That Friday was like any other, except that Jen finally had a doctor's appointment for that nagging cough.  It turned into the second most difficult day of my life.

Everyone reading this please slow down and really read these next sentences.
Take the time, right now, to be with the someone you love.  Invest the time, right now.   Tell them you love them, right now.  Don't wait until tomorrow or for a perfect moment.  Do it now.

You never know when June 1st is going to come.

There's been an event that keeps coming back to me over and over again over the last few weeks.
On one particular occasion at Froedtert hospital, I had headed down to the non denominational chapel to pray, and to try and call in every last favor I possibly could to extend Jen's life. In the chapel was a man, who I'm assuming was Muslim, on a mat praying. It was an interesting moment.  I didn't interrupt him. He didn't interrupt me. We were both in this space praying to the diety we were taught to. In other parts of the world our religions are vehemietly opposed to each other. But here we were both united in our suffering and need for help.

While we were there, a part of me wondered, are we praying to the same god? Or different ones? Are we both right, is one of us right, or have we both been delusioned into believing that there's something or someone listening to our pleas?  In the days since, I've revisited that encounter and wondered about who he may have been praying for. Did they make it? If so was it because he was praying to the right god, and I was wrong? Crazy talk, I know, but such are the ponderings of a young widower.

D Day.  I'm not sure anyone knew how torn up inside I was on Friday and Saturday.

The last week has been a reminder that this is still a difficult journey.
The house needs to have a thorough cleaning.  It isn't a complete disaster, but it doesn't smell fresh. Makes me wonder what I'm not doing that's causing it.
And because of my scatteredness one morning this week I forgot my badge which keep me from getting into the parking garage and made me wait at the front desk.

I haven't had any real breakdowns recently but that changed this week too.  Two things happened which, in succession, broke me down.
First, I re-listened to the voice recording of me telling the kids that Jen had cancer.  In the background I hear Jen coughing and it brought back all the memories of her being with us but knowing she had cancer. The agony of those first weeks, dealing with the enormity, the uncertainty, and how to break it to everybody. It all came back.
Then...
I was going back in my Evernote application. I have an email from Jen talking about how excited she was to go to the JCI Christmas party and wondering if we were going to meet our friends the Saucedas and Arths there.  Looking at the date of the email she had about 5 weeks left to live when she wrote it.  She so looked forward to that night.  We didn't say it to each other or anyone else, but I think we both knew that it was going to be the last "night out" we would have.

After I read that email I was a wreck.  I felt sunk.  Like the tasks I was doing at work were so meaningless, so pointless, why the hell am I doing any of this?
And then the very basic questions with no possible answers started coming back....
Why can't I be with my wife?  Why can't I go home to her right now?  Why did this have to happen like this?  Why does ....just .... WHY!?

I keep these things because they are my tangible connections to Jen. I'm truly afraid that as shot as my memory is I'll forget her, and I'll have to rely on these things to remember how she sounded, how she laughed.  So I don't dare get rid of them.  But it's a double edged sword.  They certainly bring back the memories of Jen but they bring back the hurt too.

On Wednesday night something new and very depressing happened...
I drempt that Jen was still alive.  We weren't doing anything special, it was a vivid dream of everyday activities in the house, but she was there.  "Oh my God, she's here!"  It was, as far as I could tell in the moment, real.  For a few moments my mind was fooled into thinking she was still here.  Part of my mind questioned it and thought "we must be dreaming", but the heart simply leapt for joy.

And then I woke up...
And reality returned...
It's was 2:23am.  and there was nobody else in the room with me.
I didn't get back to sleep that night.

Life is just plain lonely now after the kids go to bed.

I know what it's like to get a little sideways on a weeknight. To say "the kids are in bed and I don't have to log into work".  There's no one else to bounce stupid ideas or call out your bad behavior, So you say, "fuck it" and you get hammered. Trying to forget about getting ahead in my career, the bills, the home owners association commitments. whatever.  You sit down with a beer and the playstation controller and stick the brain in neutral for a while.  You know it's not the best thing to do, but, what the hell. Who does it hurt?

Being a single father is an absolutely noble cause, and I get it, but there are times when I just want to punch out. To step outside this story for a while.  Because when I sit and think about it, it's very painful.  And at the end of the day, very lonely.

But, even with all of the emotional hardship involve, I've come to the realization that all things concidered, we're doing pretty well.  I've got kids who've really stepped up and moved forward. I've got a great job and employer that understands whats going on. We're not in debt. Other than the fact that I'm a single parent in his early 40s, trying to raise 3 capable, strong girls alone, I'm doing damn good.   I don't want to paint this picture of " woe is me" " life is horrible". It's not. Except for the fact I lost he love of my life, things are great.

That might be part of the problem. Jen and I made these choices to put us here.   We were... comfortable.  On our way... We never thought we " had it made" but we sure were happy with where we had positioned our lives and the family. We actually told each other as much.

And then cancer had to come into it.

I miss you Jen. I wish you were here to share this with me.

T+2 Months

So it's been 2 months now since Jen's passing. I've had time to process the last few months of the journey, and gotten up the courage to start posting again.  There have been numerous people asking when I was going to "get back into it" so here goes...

Jen's Diagnosis
When Jen got the diagnosis, it wasn't a case of maybe we got it early enough, maybe we can fix this.  No.  The gravity of her diagnosis was complete.  Stage 4b.  It would have taken the very definition of a miracle to stop the inevitable outcome.  It was that day, June 1st 2012, that I knew.  My wife, my love, my friend, would die in front of me, soon.  She would pass and leave us forever.   At that point, the world was broken, and me with it.

Looking back on it now I feel guilty.  Did my unspoken negativity lead or aide her passing?  Did my dark thoughts keep the miracle from happening?

The Oncology Team at Froedtert
I had some bloodwork done in March at Froedtert so I stopped in the cancer center to thank them.  I wasn't sure how I was going to feel or react but I knew I had to thank them. Taking an extremely long route through the various wings of the hospital to get to the Cancer Center, there was a familiarity with the hallways and colors, but I was uneasy.  Very, uneasy.  I kept thinking that I needed to get back to Jen.  As if she was sleeping up in her room and I had snuck out for a coffee but needed to be back before she woke up.  I found myself trying to remember what labs or appointments Jen had on the schedule for the day.  But that was followed, of course, by the stark realization that there were no appointments today, no tests to take.  I sat down on one of the benches and just let that wash over me for a while.

After I composed myself I headed over to the Courage clinic and checked in to see if Dr. Santana was available.  He was immediately, and we walked back into one of the conference rooms.  I hadn't rehearsed what I was going to say, so I started with "Thank You".  We talked back and fourth for a few minutes when his pager buzzed and he asked if he could step out for a second.  He came back in with Nurse Kay and other members of the team.  So I delivered the message to the whole team.  I thanked them for putting up with me during the appointments and phone calls.   "What you do is important.  Your optimistic approach and enthusiasm is greatly appreciated by your patients.  You must continue that way.  I thank you and I know Jen Thanks you."  Once again not a dry eye in the house, including mine.

Dr. Santana and Livestrong have stated the same thing.  The term cancer survivor doesn't apply only to the people who have been diagnosed with it.  It applies to the caregiver and those who carry on after the cancer claims a loved one.

Things I've learned:

The Good:

• I can mentally survive the death of my wife. Yes, this is still an ongoing process, but I didn't completely fall apart and become non-functional like I feared. They say the death of a spouse is one, if not the most, stressful event a person can go through. check. done.
• On the whole, I can handle the single parent logistics thing. It sucks most of the time, but I can handle.
• The Girls seem to be doing OK. They are not withdrawn, they're not morose, they're not violent or mean-spirited. In fact they've proven very resilient. If anything, this has made us a tighter crew.
• Parental decision to be made? It's mine, all mine! muuhahhaahaha!
• I've internalized the new role as my new calling. A shepard charged with protecting and leading the flock. While others gave up petty stuff for lent, I gave up myself and the plans Jen and I had.
• There are people out there who will do unimaginably generous things to help you out when you need it.
• Even after the toughest of heartbreaks, I can still be grateful for the good things in my life.
• I can bake (yes BAKE!)
• I can feel good after buying a car.
• I actually feel like I deserve a vacation, for once.

The Bad:

• There are some simple facts and dates that I repeatedly get wrong. To my great frustration and embarrassment. Regardless of how careful I am or how many times I proofread, it's as if there's something consistently rewriting bad data to my brain.
• Parental decision to be made? It's all mine to make regardless of how uncomfortable or ill prepared.  Sometimes, I'm making it up as I go along.
• I can waffle on an easy decision at the most inopportune times. (seemingly, without rhyme or reason)
• I never know when a song, a sign, or something someone says, will start an uncontrollable chain reaction of thoughts that ends with me teary eyed and embarrassed that my emotions got away from me...again.
• My Short term memory is shot. Utterly useless. Unless I've written it down, I can't tell you anything we discussed this week. This makes work a VERY stressful place trying to keep all the bases covered when you can't remember.
• When I'm depressed I eat and drink... a lot.
• I'm in the worst physical shape I've been in 15 years (see above. correlation? nah.)
• Not that I ask for slack, but some folks just "get" my situation and understand the impact it may have. Others? They see this as something you take care of over the weekend and come back to work without any impact. 
• I wake up every morning determined that "today's going to be different. I'm going to reengage, kick some ass, and deliver." And, invariably, I go to bed disappointed with the lack of progress and say to myself "tomorrow, I HAVE to make a change".
• I have a long list of creative ideas, but I never start any of them. It just seems like another task, regardless of how relaxing or fulfilling it might prove. So I never start.
• I'm paranoid of a lot of things, some valid, most not. (this is NOT new but the list has changed)
• When I was reading the "grief" and bereavement stuff while Jen was in the hospital, people talked about how grief affects every facet of your life. I thought "these people are just undisciplined unstructured folks who can't apply systems and logic to solve problems. If you put an emotionless process or system in place you can shelve the emotions and follow the plan you built". Now? I count myself amongst them. There's something about my mental state right now that makes everything difficult to think through to the end.  Ever had one of those moments where you tripped and for five or six awkward steps you were trying to gain your balance and not fall flat on your face?  That's my day, mentally.
• I have no tolerance for difficulty. If something takes effort, any effort, it seems like yet another insurmountable task requiring focus and energy. It will probably get dropped... quickly.
• When I'm rested I can walk through hell with a smile. But I can (and unfortunately, have) blown up over some very minor issues. All of these meltdowns came when I was tired or very sick or beyond frustrated with something else. Regardless, afterwards I feel like the worst parent on the face of the earth, undeserving of the immense Love I receive from my kids.
• Unless you're going to hire a maid (hmm.. that'd be nice), or the kids are going to do it, you're it... Lucky You
• It has changed from the "Mother - Daughter Talk" to the "Father - Daughter Talk" YEAH! SO looking forward to that in the near future.  No subject can be unapproachable. As a single dad, you can't be squeamish. There is no boy stuff vs girl stuff, there's only stuff that has to be discussed.
• Vanilla cupcakes and chocolate cupcakes have different baking times... Someone should fix this.

Happy Birthday Jen

Today, January 26^th 2013 would have been Jen’s 40^th Birthday.

To celebrate her birthday, the girls and I launched balloons with Happy Birthday wishes attached.  For 10 minutes they rose into a beautifuly sunny sky, until they could no longer be seen.

I haven’t posted this week because of everything that went on; the chaotic thoughts and feelings in the days after Jen’s death, the visitation, the funeral.  There is much I want to write about, but I need to get a handle on them first, so I can do those experiences justice.

In the coming days I will be updating this blog on how the family’s doing, how we’re coping, and the view ahead for us.  We are doing surprisingly well, but the road of recovery is long.

Long term, I intend to continue this blog.  It was started before our cancer journey and it should live beyond it.  It’s part of the healing process, and it will be interesting to look back years from now and see what’s been written.

Services For Jennifer Engel

Services For Jennifer Engel

Visitation
Tuesday January 22nd - 5pm to 8pm
Prayer Service 7:30pm

Maxx Sass Funeral Home
Mission Hills Chapel
8910 W Drexel Ave
Franklin WI 53132

Funeral
Wednesday January 23rd
Visitation prior to Service 9:30am to 10:30am
Funeral Service 10:30am

St. Mary Catholic Faith Community
9520 W. Forest Home Avenue
Hales Corners, WI

In Liew of flowers, memorials to appreciated to St. Mary Catholic Faith
Community.

Goodnight

Goodnight to my wife, the love of my life, my strength, my counsel, my best friend, and the most beautiful soul I have ever known.
Jennifer Lynn Engel
1/26/1973 - 1/18/2013

Out of the frying pan, into the fire, back to the pan. Arrgggggg!

Jen’s back in the Medical ICU at Froedtert.  She’s got very low blood pressure, severe swelling of the legs, and difficulty breathing from fluid in the lungs. 

Jen went in for labs on Monday.  They wheeled her past my chair out in the waiting lobby and urgently told me to follow.  Once in the cancer center, they explained that Jen was light headed and dizzy and had extremely low blood pressure.  They determined that the pooling of fluid in her legs, feet, and lungs had reduced her blood fluid volume dangerous levels.  She was an ICU candidate right then and there. BUT ICU policy won’t accept patients from anywhere but the ER.  Super.  So she was wheeled into the ER for a 4 hour stay.

In the ER we discussed the symptoms with the ER team.  Their response? “At some point you have to decide how hard you want to treat this.”  There’s a hopeful statement for you.  I bit my tongue rather than verbally tear the Dr apart for that.   Finally, after convincing them that we actually do want treatment, and that she was an “ICU case”, Jen was transferred to the Medical ICU.

Once there the ICU doctors took over.  They determined that she should be treated as an infection case first before they try to get Jen’s body to release all her fluid.

It’s now Tuesday Evening, and Jen’s out of the immediate danger zone.  After getting antibiotics for 14 hours her blood pressure is in the lower range of comfortable.  She still requires quite a bit of oxygen.  Her legs are still VERY swollen.  Her lungs are still filling with fluid.  But she’s no longer a candidate for the ICU.  She’ll be transferred to the regular oncology floor sometime this evening.  When do we go home?  I don’t know.  What I do know is that Jen wants me to be here with her, and I intend to be.

Listening to the lung, heart, ER, or ICU doctors you’ll get various statements including:

“At some point you have to decide how much treatment is enough”

“Her lungs and her heart are not as efficient anymore.   She could get worse at any moment”

“The time left is precious, I don’t want to advise anyone NOT to bring the family in and miss what might be last moments. You can’t get those back.”

“She might not go home”

Listening to the Oncology department you’ll hear:

“We just need to treat the secondary symptoms and let the Chemo do its job”

“There’s a very good chance the chemo can affect this”

“These things are treatable, we can treat this”

“I’m hopeful that she can go home in a few days”

I keep telling myself that I won’t judge things hour by hour anymore. Sitting here in the room and watching the heart and lung monitors doesn’t accomplish anything.  Doing that just throws you up and down.  We have to take it day by day and week by week.  The problem is that when you taking the longer view, you can’t help but notice that the trend turns downward.

I’m mentally tired, and fried emotionally. With everything that’s happened and the continual "it’s serious/it’s not serious" events and discussions, I can no longer determine what’s serious or not.  Do I let everybody know or not.  Do I say it’s serious or not?  Is a particular fact important/telling/indicative or not? I can no longer make these decisions easily.

Home... Yes, Home

After a week's worth of slow and steady progress, Jen was released from Froedtert last night (Thursday).  That's pretty amazing considering that only a week and a half ago she was in the ICU. The blood clots are receding, the plural effusions are accumulating fluid at a much reduced rate, and blood oxygen levels are up on decreased oxygen delivered.  Based on all that, they sent us home.

While being home is certainly better than being at the hospital, I think we're both a little nervous about leaving.  At the hospital, there's a level of reassurance having a nurse within a minute or two, and doctors shortly thereafter.  At home, Jen has an IT guy (albeit a smart and good looking one) within seconds, but the docs aren't here to help.

Jen's home and resting on the couch.  She's got a long ways to go, but the short term looks good.  If she can continue to regain lung function, she'll gain strength.  It's just a matter of time and medication.

So I'm working from home and watching her today.  I'm making sure that we have all of the things in place here at home so that others can help her during the days next week.

I need to get my butt back into the office.  This was an unexpected and unwelcomed hiatus.  While it was absolutely necessary, it hasn't been at all fun or relaxing (obviously).  It'll be good for me to get back to the "normal" of JCI.

Intensive Care

On Monday evening Jen was given a combination of medications, when combined caused her to completely crash.  Jen was completely out of it, unable to remain conscious, eyes in different directions.  I spent 20 minutes keeping her awake, talking about how we met, our life together, our kids.

The Drs conferred, Jen needed to get to the ICU, FAST.  As they were wheeling her out of the room, they asked me if they had the directive to intubate her if necessary.  Wanting her to be alive for her father and her kids, I said yes.

And then I made that dreaded call that no one wants to make.  To her father to come down, and to my parents to bring the kids, NOW.  I thought time had run out, and prayed that they could get here in time on New Year’s eve.

When they got her to the ICU they did not intubate her.  They analyzed the various number s and symptoms and decided that it was the combination of medications that had overly sedated her and dropped her respiratory rate so low despite the low oxygen level.  They administered an opiate blocker that instantly revived her from overdosed to fully awake and fully aware of everything going on.  I’ve never seen anything like it, and I never want to see it again.

But based on her condition, we still believed that time was short.  I had to tell the kids that Mom might not have much time left.  The single most difficult thing I’ve ever had to do.

The girls and the parents were shuffled in and spent time with her.  By the end of the night, Jen was doing better (a relative term), and it was determined that she would not pass immediately.  Exhausted, everybody headed to our place in Franklin. 

I walked everyone back to their cars with the assurance that I would contact them if anything changed good or bad, and that everyone should come back in the  morning to see Jen again. 

I ran back up to the ICU just in time to give her a kiss at new years.  A moment I’ll never forget.

On Tuesday we meet with Dr.Santana and he gave us the bad news.  During the 2 week timeframe that Jen had been off the crizotinib during the brain radiation treatment, the tumors have progressed.  It was determined that Jen should receive a treatment of standard chemotherapy (in addition to the crizotinib) to try to knock back the tumors.  If the chemo can affect the cancer, there's a chance to get her in another clinical trial.

Jen spent the next three days in the ICU.  Her plural effusions have been drained numerous times.  And during that time, she recovered from the imminent danger.  She was transferred back to the general lung patient floor on Thursday.  Her lung function is returning slowly.  Very slowly.   But just as importantly, she’s getting a LOT of sleep.  She was incredibly sleep deprived in the ICU, being poked, examined, and medicated every hour for 3 days.

So here we are again, in another hospital room.  But it’s all the same.  I’ve got nothing but prayer to effect the situation.  The ups, the downs, the endless hours of waiting and hoping here are tough.

The next few days will determine if Jen gets to come home.  If her lung function comes up and her oxygen requirements go down, maybe, just maybe, she can come home.  The alternative is uncomfortable to ponder.  Today, we had a very serious discussion of how hard she’s got to fight this and how I’m here with every step.  She’s far from giving up.  We’re far from giving up.