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.