Positive Signs

Jen's doing surprisingly well over the past few days.  She's up, walking around, doing some cooking and cleaning and generally taking care of things around the house.  She's not as actively engaged with the kids as she wants to be, and she still shouldn't drive, but generally she's improving in virtually all facets.

I'm not sure there's anything solid to attribute that to.  She's been on the Xalkori for 12 days now. So, yeah, it could be the drug.  If so, than this is even more of a wonder drug than expected.   Regardless, we'll take the improvement as a positive sign that things are headed in the right direction.

She's been going longer between pain medications as well.  Sometime stretching as far as 4 hours between doses.  Two weeks ago, that was unheard of.

My mom has left for her appointments in Naperville. Since she's doing so well, Jen believes she can handle the kids during the day.  I'm pretty sure she can too.  They aren't going anywhere.  There's plenty of help in the neighborhood should Jen have an emergency, and there's always 911.  I'll come home, make dinner, and take the kids out for some adventure somewhere.

Again, to all of you out there that have helped out, cooked food, delivered food, watched our kids, whatever...
THANK YOU.
You are all a blessing to us.  And we're truly humbled by the outpouring of support.

Jen had a number of appointments today at Froedtert, starting at 9:30am and ending around 2pm this afternoon.  I was there of course, carrying "the football" as I've come to call it. It contains all of the lab results, clinical trial printouts, livestrong binders, and cancer documents.

Jen's morning started with the requisite blood work and labs at 9:30.  It was a quick appointment... all of about 30 minutes.  For some reason they didn't use the mediport that she had installed two weeks ago and instead tapped her arm.  They should have used the port. That's what it's there for.  Heck even I could draw blood through that thing.  It's huge.

Next up we saw doctor Santana.  He was very pleased to hear of the improvement of Jen's condition and attributed it to the medication.  The discussion then turned to what is most likely happening within the tumors.

1. The Xalkori is interfacing with the ALK positive tumor cells and is "turning off" the uncontrolled cell division.
2. It's essentially "killing" the cancerous cells
3. The bodies "garbage collection" systems are sweeping up these dead cells, like any other normal dead cells within your body and removing them naturally.

In short: the tumors should be shrinking, and the general improvement in activity, pain, and blood levels is the best indication that this is the case.

Dr Santana then initiated the discussion on how long the drug will be effective.  It was stated clearly up-front that the cancer will eventually become resistant to the Xalkori.  While he doesn't believe that it will be soon, inevitably it will happen.  At that point, we'll have to change how we attack the cancer.  Whether that's going  back to the carpet bombing with chemo, or Hopefully, the next genetically targeted drug, we won't know until we get there.  For now, we've got the current plan, and we're executing it.  It's a question of how far we can shrink it before the resistance appears

Jen will have CT scans on July 23rd to determine the size of the tumors.  Until then we're really flying blind.  The only instrument to determine progress is how Jen feels.  Did I mention how much I hate ambiguity and waiting?

Next up was the nutritionist.  This appointment was set when Jen was loosing weight at an alarming rate.  She's lost about 35 pound since April.  However, she's managed to maintain her current weight for the last few weeks.  So this meeting was really a talk about how to maintain muscle mass.  Essentially I've got to up the protein in her diet.  So nuts, beans, and lean meat are going to get pushed.  GORP (good 'ol raisins and peanuts)  should become the snack of choice (if I can help it).

I cancelled my annual pheasant hunting trip out to South Dakota in November.  Given the uncertainty of everything it seemed the right thing to do.  Kind bummed about it as it's one of the highlights of my year, but I'm not thinking much beyond a week out nowdays.

The Changing of the Guard

We've settled into an uneasy normal now at the Engel house.  Jen seems to be doing better, the kids are into their summer mode, and I'm going to work everyday.  Outwardly, we look to be the typical suburban family,  inwardly we're all a little on edge.

Jen's mom Kathy needed to get back home to central Wisconsin to take care of other matters.  It was a godsend to have her here for the two weeks we did.  So my mom came up from Naperville to take her place.  A "changing of the guard" if you will.  An extra hand isn't really needed for the entire day.  Jen's able to watch the kids and do some smaller household tasks during the workday hours.  But she can't do it the whole day, and naps frequently.  So, someone really does need to be here for the kids during those times.

Jen's actually been more active and about over the past few days.  She's going 3 hours between pain meds sometimes, which in the grand scheme of things, is a plus.  It's too early for the Xalkori to have had much affect yet.  So it has to be due to the fact that she's trying to be more active.    Again, looking at her, most of the time you wouldn't know she's got it as bad as she does.  She's up, walking around, joking with the kids... Takes a lot of naps and gets tired fast but overall she doesn't look that bad.

Jen goes in for blood work, labs, and a examination with DR. Santana on Wednesday.  Since she will have been on the treatment for only 13 days by that point, we won't have any true tests to see if the tumors have been effective.  So, we wait for any true measure of progress.  Did I mention that I can't stand waiting and ambiguity?

Every now and then I wonder if I'm imagining all this cancer stuff.  That somehow I've had some sort of mental breakdown and I'm just making this up in my head.  Because Jen's up and around, the kids are running around having fun, I'm going to work... nothing's wrong. Right?  And for that second, I've forgotten about Jen's condition.  Then it all comes home again. That's what makes this so uneasy.  She doesn't look like she's got cancer.  Obviously that's a great thing.  It's a blessing, sure.  But it really does make it confusing, at least for me.

Sydney, however, is having trouble.  She's a perfectionist and recently she's just fallen apart emotionally trying to make or do something.  I don't know how to help her cause I'm right there on that edge too.  Little setbacks are dangerous for both of us.

Working has its benefits and difficulties right now.   Doing the IT governance thing makes me focus on something different, but I've got the attention span of a 6 year old.  Working the household and medical logistics, doing deep dives on process, and making timely decisions for my JCI role is tough.  I've found that I've got about 20 minutes of focus at a time.  Then, inevitably, my mind wanders to outside of work, validates Jen's condition,  and I have to prop myself back up emotionally.  I feel guilty about that.  I'm horribly inefficient right now.

Tomorrow is the third 5K run for the Oracle center of excellence.  I won't be running.  That's going to be the wrong move in some folks eyes, but tough.  Put yourself in my shoes.  The last thing this family needs is for me to do something stupid and keel over from a heart attack.  I should do a light jog, sure.  But, inevitably I'll push my heart to the edge just because I can't stand losing to some better runners.  Nope.  Not gonna do it.  Maybe that's a stupid way of looking at it but I'm trying to reduce every risk right now.  I haven't ridden the motorcycle into work since mid May either.  With all the hot dry weather we've had it was perfect for commuting by motorcycle.  But somehow, riding in with bumper to bumper traffic seems like undo risk now.  I hope that goes away eventually.

Rough night

Please pardon the brevity of this post. I'm writing it on my phone...

Jen was running a 101.8 fever last night around 9pm. We were told to get into the Froedert Er quickly as it cpuld be an infection or reaction to the new medication. We got there around 9:45. They drew blood, did a chest X-ray and pumped fluids. They ruled out both infection AND allergic reaction, and her fever broke. They released her and we got back home around 4am.

Jen's still in good spirits. I'm tired. We're all hopeful that it was just because she was so low on fluids

Jen always said she was different...

Wow. It's 9:30pm and I'm still having trouble believing the events of the day.

Jen and I were at Froedert at 7:00am this morning to have pre-chemo bloodwork done, and get a mediport installed.  After which we met with Dr. Santana around 12:30 to be cleared for chemo.  I was surprised when a large number of people walked into the small exam room.  They were all smiling and upbeat so I figured that they shared a joke just outside the door.  They all introduced themselves and the Dr. said, "They all wanted to be here for the good news".  He then started talking about how, because of the oddity of such a young, non-smoker, getting this cancer, they ordered a whole bank of tests that aren't normally prescribed.  What they found was a rare condition within the tumor sample, called ALK gene rearrangement, which allows us to use a very new and specific treatment plan.  So new, it was approved by the FDA on August 24th last year.  It has a high percentage of shrinking the tumors with this very condition.  So for now, Jen won't be undergoing chemo, and the near term prognosis is better.

I was shocked.  stunned.  dumbfounded.  If I had been standing up, I would have collapsed.  This was incredible news.  it's still sinking in 9 hours later.

Jen was still under the effects of the drugs from putting the medical port in.  She was happy, sure, but she seemed to be tempering her reaction.  So I, as I always do, started auditing...

• Are we absolutely sure this test and these results are for Jen's tumor?  (I was assured yes... several times, every time I asked)
• Are we sure we should discontinue the chemo? (yes it may inhibit the uptake of the drug, and the trials around this drug are VERY good for this type of cancer)
• Is this a cure?  (unfortunately no, the cancer most likely cannot be completely removed)
• Is this for real? Does this increase her chances of survival? (an emphatic yes... several times)
• What will happen to the tumor cells that stop growing? ( they'll be eliminated through the body's defenses over time)
• How are the other three cancer patients with this anomaly at Froedert doing?  (every one of them is recovering)

I can't possibly imagine that beating stage 4 cancer is as easy as taking a pill, but if it works, this seems a hell of a lot better than chemotherapy. This treatment is like using cruise missiles instead of carpet bombing. Could it be possible that Jen returns to a "normal" routine in a couple months?  Is that a possibility?  That's such a contrast to yesterday's thinking it's crazy.  

Bottom line:

Crizontinib shrinks these NSCLC tumors in a significant percentage of cases, and increases life expectancy in the near term.  

However... physically, Jen isn't any better off than she was yesterday.  She's still anemic and still has stage 4 lung cancer.  This isn't a cure. The cancer will, at some point, become resistant to it.  No one knows how it affects the long term.  I have to keep reminding myself that.  

Regardless, I'm so happy right now I'm in tears.  My face hurts from smiling.  Jen's the happiest I've seen in months.

Known Facts:

• Jen has a particular subtype of non-small-cell lung cancer (NSCLC) that has an identifiable trait called ALK gene rearrangement.  This condition exists in 3% to 5% of NSCLCs.  This "defect" allows for the cancer cell to be chemically "told" to stop dividing.   The crizontinib drug does just that.
• Chemotherapy will not be administered as a first treatment.  This means that Jen won't have to endure all the side effects of the radiation.  Her immune system won't be compromized.
• The FDD approved form of the drug is Xalkori and it'll cost $5,500 a month (according to the Dr.)  There's a small chance insurance will not cover it.  We were supposed to know this afternoon, but no word yet.  Doesn't matter to me, don't care what I have to do she's getting it.

If you want to know more google crizontinib  or ALK gene rearrangement.  

Day 11: The calm before round 1

A surprising number of people have been thanking me for blogging about Jen's journey and how she's doing.  This really started out as just a way for me to vent at 2am.  Writing has a way of focusing and calming me.  I didn't realize that all my Google plus and Gmail contacts would get notification of it the first time I published a post.  It got circulated once, and now a lot of friends and coworkers are reading it.   While it's kind of embarrassing, it's a blessing I didn't expect.  So the blog's purpose has morphed into primarily keeping everyone aware of Jen's condition.  However, my feelings and rants will still slip in here now and then (like later on in this one)... so take the good with the bad.  Who knows, maybe this blog helps someone else deal with cancer in their lives at some point down the line.

Wednesday Jen goes in for more pre chemo bloodwork, port installation, and Dr's clearance to begin Chemotherapy.  Bright and squirrley at Froedert.  It's becoming a routine.

On Thursday the fight enters a new intensity level... Chemotherapy.  It's going to be a very long day for Jen.  They're telling us to expect a 12 hour treatment.  She's getting 3 different cancer drugs each cycle: Carboplatin, Taxol, and Bevacizamab.  On the first treatment they're going to go slow and individually so that they can monitor her reaction to each.  Subsequent cycles will be administered faster, if possible, so that treatment could be completed in 5 to 6 hours.  Regardless, her immune system will be very compromised.  We'll have to be extremely careful about how many people she's exposed to, and conscious of the health of the rest of the family.  If one of us comes down with a cough, sore throat, or sniffles, we'll have to figure about an isolation plan.  Yikes.  

Jen will go in for treatment every three weeks.  Every 6 weeks she'll undergo a series of scan to determine if the tumor is reacting to the treatment.  If it is, the treatment will continue until the tumors are gone OR they get smart and become resistant to the drugs.

If the tumors don't begin reducing in size or become resistant the Dr.s will need to find other routes for treatment.  I'll also be weighting our options of getting into other clinical trials around the country.  I don't care were we have to go, or what we need to do, but we have to find a cure for this.  We have to.

I came home from the office today to find everyone in tears.  Apparently, all the neighbors had stopped by to bring dinner and to let us know they want to help.  I just missed it. On their own they've all banded together and stopped in to help.  Wow.  We hardly know the neighbors, we just moved in last fall.  

I've also come to learn that there is an ever growing supply line of dinners being prepared for us.  Again, Wow. Thanks guys.  I don't know how to express it any more sincerely and simply than that. We're not sure just how much Jen's going to be eating, but it's a relief to know that I won't have to cook all the time.

Day 10: The New Numb

Jen's been holding steady over the past few days.  Still on the pain meds.  Still toughing it out.  I've moved into a phase where I'm either extremely angry over the illness, or I'm just numb, bumbling, and inefficient.  Outwardly, I'm keeping it pretty tight, but things are churning just under the surface.  Little setbacks are dangerous.  I've flown off the handle a couple of times.

The big questions remain:  How tough will the treatments be on Jen; and will the tumors respond to treatment.  Answers to these determine the future.

The kids have begun to make "get well" cards and have longer faces.  They aren't laughing as much as last week.  I think the reality of it is settling in for them.  No one's asked the big "Is mom going to die?" question yet which surprises me.  On one hand you want them to open up and ask these questions because then you know they're understand what's going on.  On the other hand you want them to hold on to whatever innocence they have left, and if they aren't worried about Mom dying, why burden them with it?

On Friday the Arth's dropped off the most amazing chicken soup we've had in years.  There were no leftovers.  On Saturday, Visu dropped off two Indian dishes.  Everyone loved the rice.  The potatoes were too spicy for evryone else but me.  Nothing went to waste. A sincere thanks to everyone who's stopped by or supplied something.  It gives me hope, that when it get's really tough, there's a team waiting to lend a hand.  It means more than you know.

Saw Father Matthew at St. Mary's on Saturday.  It was less comforting than I expected.  I did most of the talking.  The discussion went through the "God has a plan for all of us; God doesn't cause bad things to happen; and He's there with us through it all" stages.  I'm not sure exactly what I expected to come out of it, but I left more angry (at the situation) than when I arrived.  If He has the plan, and bad things happen, then who/what's to blame for it?  It's that contradiction that I'm struggling with.  Not that there's an answer, but I'm struggling with it none the less.  And how does all this affect the girls formation of faith and how they see God?  How could it have any positive effect?

Got the package from the Livestrong organization on Saturday.  Now the entire family is wearing the wristbands showing their support.

Jen didn't make it into the clinical trial we had been hoping for, so she'll only be getting the standard 3 drug cocktail for her treatment.  I'm bummed by that, but we've got a plan and we're executing it.

Weds

• Lab work to be sure her "numbers" are good and get cleared for chemo
• procedure to put in the "port" under her collarbone so they don't have to start an IV every time they need to take blood or administer treatment.  

Thursday

• Chemo: 12 hours of it.

Day 7: Meeting with Oncology & The lesson

We  headed to the Froedert Cancer center for our 11am appointment to discuss treatment options.  We were there for over 4 hours talking to numerous Dr.s, oncologists,  and clinical trial coordinators.  We learned of a clinical trial of a new lung cancer treatment that's taking place in multiple hospitals across the country. Jen agreed to take part in it.  We go in tomorrow morning to take the extra tests required to make the trial scientific. After that it will be a 50/50 chance she receives the extra chemo or standard care.

I pressed the Dr. several times for percentages and outlooks.  Of course he didn't give specifics.   They can't.  But he didn't mince words either.  This is cancer.  It's serious.  Based on it's locations and stage she cannot be cured of it.  It will remain in her system. She could have a month left or several years left, it all depends on how the tumors react to the treatment.

If she does not get into the trial chemo begins on Thursday next week.  We've been told to expect a VERY long day, a full 12 hours worth of chemo.  I believe that's because they want to introduce each of the 3 drugs separately to rule out any interactions.  Regardless, it's going to be a long day for Jen.

If she does get in the trial it may take until the next week to get the extra medicine. I hate to waste any seconds before we start chemo.  However, the doctor assured me that a week one way or the other doesn't make a difference.  If the tumors respond to drugs the week is insignificant.  Part of me doesn't believe it but regardless, I can't get the drug here sooner.  So it has to be.

We told the kids just before dinner tonight.  It actually went better than expected.  I didn't really have anything prepared but it went along the lines of:
You're smart kids so you know things are going on
Yes your mom is sick, and it is cancer
Many people get cancer and live
We have the best doctors working on it and they have a plan for mom
Her treatment may make her more ill and tired but its makeing her better
It's OK to be mad, or scared, or sad, or cry
You can ask me anything I'll give you the answer if I know it or we'll try to get an answer together
You can talk to us at any time

I'm not sure they really grasp the magnitude of the situation.  That will come in time.  It may get harder then

I really wish Jen wasn't the center of this. But the lessen I hope everyone internalizes is this: tell the people you love that you love them, now.  Spend the time with them now. Ignite the moment now.  Don't wait for some special occasion or place or circumstance.  We kid ourselves into thinking that our professions or careers can take front and center for a while and we'll "make it up" to our loved ones once we get ahead or things settle down at the office.  You may not get that chance.

Day 5: June 5th 2012

Not the news we wanted to hear.

The pathology report was not good; large cell undifferentiated carcinoma.  Which means they don't know where it came from, an it's rather aggressive.  Even the doctor had a tough time relaying all the info to me she sounded like she was on the verge of tearing up.  The mortality rate of this particular cancer in advanced stages is very high.

Jen has redoubled her resolve to fight this.  It gives me strength.

I'm drained.  I've broke down so many times today I'm dehydrated. In an effort to sleep tonight I've taken some Excedrin PM. Lets hope it helps. The lawns' already watered.

Watering the lawn at 4:30am

There was no chance that I was going to get to sleep this morning. So after a couple hours of researching how to tell kids about cancer out on the patio I decided to make my lawn the greenest in the neighborhood.

2:00am No sleep, just tears

Its 2am. I got a couple hours of sleep before waking up in the middle of the night. Jen had gotten up to take her meds. The enormity of her situation hit me like a ton of bricks. I laid there in tears for a while before giving up getting back to sleep and came downstairs. So here I am. Alone, afraid, watching stupid tv keep my mind from running wild with worst case scenarios and sobbing uncontrollably. Is this what I have to look forward to? I want to wake her up to talk but she needs to sleep. If we're in our last days I want to spend it all awake together but she needs to sleep. This is a hell that no one should have to go through. Please God, please let her live.

Day 4

Day 4: Monday June 4th 2012

Jen had an up and down day.  On the PKs: sore, but smiling and joking.  Off the PKs: immobile, and in pain.  Two things are constant: her coughing and her determination to beat this thing.

We called her primary doctor at 11am for an update on the pathology report.  Nothing had been completed yet.  However, by 4pm the Dr. called us to state that while the "stain" tests had not yet completed that it was being diagnosed as "non-small cell" lung cancer.  This, while confirming the cancer diagnosis, was good news in that the non-small cell typically grows much slower than small cell.  Find blessings where you can.

The Oncology department called to confirm that we had an appointment for next week.  WRONG.  Jen's been diagnosed with stage 4 and the other Dr.s were adamant about beginning treatment this week.  We're not waiting til next week.  Minutes later they confirmed that she could get in on Thurdsay.  I pressed for an even earlier appointment but it didn't happen.  Thursday may very well top last Friday on the difficulty scale.  I know it's bad. I'm not sure that I want to hear the details of just how bad.  

Worked from home today. Tried to keep my head in the compliance and audit space.  But I have to admit, at certain points it's tough to focus.  I'm in this in-between world where it's tough to focus on Jen because it's painful, and it's tough to focus on work because you feel guilty.  I'm going to work from home tomorrow as well.  I need to be here when Jen gets that pathology report.  If a husband is worth anything, he should be there for his wife at that time.

Day 3: Sunday June 3, 2012

It all seems so surreal. To think that I could be losing her right now. When she's on the pain meds it's easy to think its not that bad. She's functioning just fine.  But then you remember how much she sleeps and how much pain killer she's on. And the world starts to crumble again. 

I feel like such an ass always asking myself "how am I going to get through this".  I'm  not the one dying. She's got it the toughest. 

Ordered bracelets and the cancer resource book from livestrong today. Hopefully it provides some guidance and hope for all of us on this journey.

What's really surprising is how risk averse I've gotten.  I'm not sure how healthy it is but I suddenly want to remove all the risk possible from my life... No more motorcycle. No more alcohol. Even the thought of not going deer hunting has crossed my mind.  I am beginning to believe that I'm going to be the only one left for the girls, and therefore have to play it safe from here out.

Day 1: June 1st 2012

Woke up today with Jen at froedert at 5am

Surreal experience thinking that I could loose her and soon raising the kids on my own. Wow. How could that work? You might as well tell me I'm going to have to take the kids to the moon. The idea seems that outlandish. 

I'm trying to keep me out of this. It's not about me. It's about Jen and her battle.  I've got the easy part, I'm not facing death. She very well may be. 

What do we tell the kids?  Obviously we don't lie to them but how do you break this?

Our Cancer Journey

Jen was preliminarily diagnosed with stage 4 lung cancer on June 1st 2012.  From Here on out, this blog will center on Jen's fight and our journey, regardless of where it leads.