The Roller coaster continues

The last few weeks have been anything but smooth.

Jen finished her whole brain radiation on Friday the 21^st.  That allowed us to head up-north to see her family and mine for the holidays.  We enjoyed a great weekend and Christmas eve with everyone.

Unfortunately, Jen began getting short of breath on Christmas day.  By the morning of the 26^th, she was Very short of breath and had trouble speaking.  We immediately drove back to Milwaukee and headed directly for the Froedtert ER.  They did a chest X-ray and CT and determined that the plural effusion of the Left lung was collapsing it.  In addition, blood clots were forming, further compromising her ability to process oxygen.  They performed a thoracentesis and drew off approximately 950cc of fluid.  That’s a lot.  After the procedure, she was %1000 better.  Over the course of the day (Weds) her lungs got steadily better.  On Thursday afternoon, she was released and we went home with an Oxygen condenser, and twice a day injections of blood thinners to combat the clots. 

Whew.  OK, we’re home.  Relax. ... Right?

Friday the 29^th was a relatively unremarkable day.  Jen camped out on the couch with her oxygen, books and the remote.

Saturday morning was a completely different story.  At 6am she work me up, and she was in obvious respiratory distress.  Her breathing was shallow, labored and fast.  We called 911 and the Franklin paramedics came out.  Both ambulances.  Good to know we’ve got that kind of response to our neighborhood.

They confirmed her shortness of breath, loaded her up and took her back to the Froedtert ER.  Again chest x-rays and CTs.  Again, a remarkable plural effusion of the left lung. Again, a thoracentesis, and  almost 1500ccs of fluid were drained.  But this procedure didn’t produce the dramatic recovery of last time.  Her blood oxygen saturation level did not recover like it did previously.  She was not talkative and laughing.

Based on the very short amount of time she accumulated fluid, it was determined that a “permanent” catheter would be placed in Jen’s left plura.  Unfortunately, that can’t be done until Monday the 31^st.  So, with all immediate treatment options exhausted, the ER gave us the option of going home.  Jen and I believed she was not ready to go home, so we elected to have her admitted, in the hopes that she might get better over the afternoon/evening, and could THEN go home.  It’s a good thing we stayed in the hospital.

Jen was completely and utterly exhausted.  To the point of being unable to stay awake during a conversation.  This is most likely due to the effort required to breathe, the heavy medication, the procedures performed on her, the sleep deprivation, and the cancer.   It has me rattled.  Over the course of Saturday Jens’s blood oxygen level did not increase.  Increasing the volume of oxygen she was getting didn’t have much effect either.  So late in the evening, they prescribed a pressurized oxygen mask to help blow air into the lungs, in the hopes of forcing them open, decreasing the effort required on her part while increasing her blood oxygen.   That helped, and her oxygen levels increased to the mid 90s during her sleep.

On Sunday morning, they took her off of the RPAP mask and back on the regular cannula.  While she’s on a pretty high volume of oxygen delivered, her blood oxygen is increasing, but very slowly.

So now it’s Sunday afternoon, and I’m sitting here bedside.  She’s still VERY tired, and sleeps constantly.  But that’s good.  I sit here and watch her blood oxygen level like a hawk, and every once and a while glance at the Bears Lions game on the TV. 

We’re here through Monday afternoon, certainly.  When Jen goes home will be determined by how well she recovers after Monday’s procedure.  The hope is that by that time she’s recovered from all that’s happened this weekend and can be cared for at home.

There isn’t anything more I can do.  We're both pretty sleep deprived. All I can do is sit here and hope that things get better.

1 Week of Treatment and Good PET results

Last week Jen underwent her first five of ten whole brain radiation treatments.   She tolerated it very well.  We all continue to hope and pray that this treatment addresses the new tumors that the crizotinib can't reach because of the blood brain barrier.

Dr. Santana pulled us in on Wednesday to discuss the preliminary results of the PET scan.  He was smiling and happy which is hos MO for good news, and it was.  Overall, the lung and adrenal tumors have not increased in size.  So it can be said that the crizotinib continues to work against those.  In addition, there was decreased glucose uptake within the lower spinal column.  This means that the cancer has decreased in its activity.  Further, there was no uptake noticed within the liver.  So it's possible that those smaller metastases are gone.  The only new feature was increased fluid around the lungs (a pleural effusion).  It will need to be watched but for now it's not a big concern.  That might change in the future, but for now they aren't concerned enough to begin treatment for it.

Jen's week consists of another 5 treatments of whole brain radiation and rest.  So far she's doing great.  They've warned us that the hair loss and extreme tiredness will occur around the holidays.  We'll see what happens, but I hope that Jen can enjoy some good food and company during the next few weeks.

Not what we wanted to hear

Over the past two weeks Jen had been suffering from “sinus infection” symptoms.  Nausea, sinus pressure, headaches and cough.  Wednesday, her nausea was beyond bad, and we called it in.  In the afternoon an MRI was performed on her head.  Today, the doctors confirmed the worst, the cancer has spread to her brain.  There are multiple locations ranging in size from barely detectable to 15mm.  There is remarkable inflammation within the rear of the skull, and that’s what’s causing the headaches.  She's been placed immediately on anti inflammatory medication.

Wow, this changes the game. 

Why didn't the Crizitinib prevent this?  The blood – brain barrier.  It’s the mechanism that keeps blood borne infections and foreign bodies from entering your brain.  Unfortunately, this also keeps any oral or blood based medication from acting within the brain.

So there are two treatment options at this point: 1. Surgical; 2. Radiological (Chemo)

Multiple surgeries on the brain poses more short term risk than the cancer, so it’s out.  Therefore, Jen will undergo specialized chemotherapy.  She’ll receive daily, whole brain, chemo therapy treatment beginning Monday Dec 10^th and running through Dec 24^th. 

In addition, a PET scan has been ordered for Monday.  The returned cough has caused concern, and the Oncology team wants to get another complete picture of what’s going on.  Monday’s going to be a long day.

This type of treatment has a relatively high success rate for treating the cancers in the brain at this stage.  However, unless there is a progression of symptoms, or the need to confirm a complete recovery diagnosis, another MRI of the head will not be conducted.  So as long as it doesn’t get worse, we won’t be actively scanning it again.

We tell the kids tonight.  Basically we’re going to talk about the outward effects of the treatment, not the detailed reasons behind it.  There’s no reason to detail how it’s spread. 

This feels like a huge setback.  I’m at a loss for words.  We had all believed that we were on a positive path. 

Happy Holidays Everyone.

Results day #3... Stay the course

... Stay the course

In the past two months Jen's pain and discomfort has returned, to a minor extent.  But her symptoms and ailments hasn't changed dramatically, nor has our outlook.  Hence I haven't been updating the blog all that much.  I know... my bad.  It just didn't seem a great use of everyone's time continually bugging everyone just to say "Every thing's the same" over and over again.

We got more data this week.  Jen had the had labs and scans performed on Monday October 22nd.  We met with Dr. Santana and learned the results Weds the 24th.  

The Short:

The tumors have remained constant in size and aspect.  In cancer circles, this is considered a win because it means the cancer is being held at bay. By clinical definition, this means that the crizotinib treatment is still considered effective, and there are no changes to the overall treatment plan.  So... we stay the course.

The Long:

This was the first set of labs and scans she's had done since the kids were in school so it was a little easier juggling the logistics of it all.  However, regardless of the relative calm when it's just Jan and I, it's still difficult to sit in the radiology waiting room.  Not knowing what the scans are going to reveal

Almost all the supporters I've talked to have admitted they go through the same range as they wait for their wife/husband/daughter to return from the magical CT machine...

... maybe it's all gone

... hopefully the treatments have gotten rid of most of it

... please don't find anything

... I hope it hasn't grown

... nah, stay positive, maybe it's all gone

... come on, be realistic, it won't all be gone

... yeah, hopefully the treatments have gotten rid of most of it

... I hope it hasn't grown

... please don't find anything

... and over and over and OVER.

Then Jen comes out, the scan is all over, and I feel a temporary sense of relief.  Even though all the heartless CT machine did was take pictures, you feel like some threshold or hurdle was overcome.  What it's going to find, it's already found.  Like it was some test that she either passed or didn't and you won't know until the next class.  Yuck.

On Wednesday, the initial exam discussion was done with another Dr.  Not Dr.Santana.  Not sure why that was but from the very beginning, this visit seemed different.  It took forever to get to the real answer we were there for.  About 10 minutes in it was stated, almost anecdotally, that "there's no change in the size of the cancer".  After that, he said he'd go get Dr Santana, and they'd return.  

...and then it was just Jen and I alone in the room.

We both took this as a bit of a disappointment.  After the two previous scans proving the tumors were decreasing, achieving "stability" seemed like a setback.  When you objectively look at the situation, sure, it's a win.  But it didn't seem that way in that sterile little room.

When the Dr came in, we briefly looked at the various tumors and measurements on the display.  And there it was in greyscale.  Nothing has changed.  None of the tumor locations showed any material sign of increase or decrease.  The minuscule differences between the August scans and these could just be differences in the angle or aspect the tumors were measured, not real growth or shrinkage.  

They way to interpret this is the crizotinib is still working.  If it weren't, there'd be growth in the tumors.  It is entirely expected that the results from growth inhibitors such crizotinib are very "front loaded".  There's an incredible initial reduction, followed by a steady decline in shrinkage rate. That's exactly what we're seeing here.  But it doesn't necessarily signal the end of crizotinib's effectiveness.  It's entirely possible that what is there is majority scar tissue, and not actively feeding cancer.  So as the cancer is being killed off, the scar tissue remains but doesn't shrink beyond a certain size.  So if you're basing your opinion on tumor size and aspect, you'd come to the wrong conclusion. 

I'm a numbers and measurements guy so, naturally, I came to the wrong conclusion. I know better now.

So what's next?

The reasonable expectations of the next scan (Dec 19th) are these:

1. The tumors are slightly reduced or remain stable
2. There is measurable progression 

If it's 1: we stay on the crizotinib horse and ride it as far as it goes

If it's 2: another biopsy will be ordered and we'll find out what we're up against... again.  and we'll figure out how we're going to win... again.

Thanks to everybody who's offered support, encouragement, or just a smile throughout all of this.  We're only in the initial steps, but knowing everybody's along for the journey means more than you could ever imagine.

Results Day #2

In the past month Jen's pain has partially gone away and the nausea has subsided to a certain degree.  She has continued her steady positive path of recovery.  Hence I haven't been updating the blog all that much.  However, that changed this week, as she had had numerous scans performed on Tuesday August 28th.  We learned the results Thursday the 30th.

The Short:
The tumors have shrunk another 15%.  This means that the crizotinib treatment is still working, the tumors are continuing to recede, and there are no changes to the overall treatment plan.

The Long:
We spent most of the day at Froedtert for labs and meeting with Dr Santana.  Bringing the girls along brought good luck last time, and we hadn't lined up a baby sitter for today.  So once again, the girls came with us.

I waited out in the waiting area while Jen went in and consulted with the Oncology nurses and Dr Santana.  It felt like a lifetime, but soon nurse Kay came out and told us all to head in.  We did so, and the DR reviewed the scans with us.  At the base level they are all positive, the tumors are continuing to respond to the crizontinib.  The primary lung and right adrenal tumors have shrunk by another 15% or so.  This puts them at approximately 35% to 40% of their original size on June 1st.  Many of the smaller tumors in the liver and lymph nodes have shrunk to a size too small to accurately identify and measure. Obviously, this is great news. It means that we continue this treatment until either the cancer is gone completely or it's proven ineffective.

Next Dates:
CT scans: Monday October 22
Results day #3: Wednesday October 24th

OK... the logical folks like me who analyze things too much for our own good are asking the following question:
If the drug reduced the tumors by 45% in the first 4 weeks, why did they only shrink by 15 or 20% in the following 6?  What does that mean?

Well...we don't know.

I've read enough research papers in the last month to speculate on 3 or 4 reasons.  I won't give power to any of them by listing them here.  All it will do is depress anyone reading.  Lord knows it's depressed me.  I've stopped reading them.

It's said that information and knowledge is power.  But I'm finding that the more I read about this, the more hopeless it looks long term.  I can site trials, percentages, drug resistance hypotheses, clinical trials underway to overcome these resistances, on and on.  I can see where some detached researcher or scientist can look at this body of data and smile at the obvious progress man has made against this abomination.  But as a caregiver and a husband trying to arm myself with everything I can to make a difference, all I've done is proven to myself that the best minds in oncology don't have an answer.

We spent Saturday and Sunday at Mt. Olympus in the Dells.  Driving home Sunday night with everyone else asleep, and me left to my thoughts, it hit me.  The summer's over.  Where did it go?  Did I waste it away worrying constantly? What did I do with it? Where does the time go when you're not watching it?

It’s working

The Short:
We have proof that the combination of Xalkori, positivity, and prayer are working.  Based on the latest CT scan, all of the measurable tumors are shrinking.  The primary lung tumor, which measured 7.5cm by 5cm, is now 4.5cm by by 3cm.  Finally, truly measureable, provable, eyes-on proof that it’s working.  Jen isn’t cured of cancer, not by a long shot.  But this proves that right now, the trend has reversed, and the tumors are shrinking.

The Long:
We went into Froedtert for the third time in as many days.  However, this day was different.  Not only did we think we’d see proof that the drugs were working, but we had the kids along for the news.

I waited out in the waiting area with the kids while Jen checked in and waited in the exam room.  She was going to text me when the Dr came in.  Two minutes later Dr Santana came walking past said “Hi” and asked if these were the kids he had heard about.  I said “yes”.  He asked “are they coming in?”  In a hushed tone I said it all depended on what he was going to say.  He said “it’s good news, they should come along.”  So in we all went, and the smile on my face was already there.

He started with the fact that he didn’t have a definitive answer for the pain.  Based on the CT it wasn’t the gallbladder or gallstones.  It was most likely the changing of one of the tumors in the liver which is located right at the “shell” or outer edge.  These can be quite painful when they grow, or in this case shrink.  So other than prescribe some longer lasting basal pain medication, there’s not a lot more he can do for it.

Then we started viewing the scans and measurements of the tumors.  When he got to the before and now scans of the lung tumor, I literally had to bite my lip to not yell “YES!”  Even an IT guy like me could see that it had shrunk.  The same was true for the tumor over the adrenal gland; shrinkage by a remarkable amount.  If this is due to the Xalkori, and we have every reason to believe it is, this is an incredible drug for this type of cancer.  A 50% reduction in 29 days? Wow.  Incredible.

Jen still has some emotional and mental issues that she’s trying to handle.  That’s completely understandable given the situation.  The counseling staff at Froedtert works with cancer patients on a continual basis, and it’s really the best place for her to go.  Therefore, we’ll be back to Froedtert tomorrow (Friday, day 4) for her to see one of them.  I’ll take her there every day if need be.

I’m allowing myself a night of smiles and happiness.  The last few days have been nothing but waiting, thinking, and worrying.  Not that long ago we didn’t know if she had weeks or months left.  For now, at least, the tide seems to have turned.  This may be a little victory.  But regardless, I’m going to let myself enjoy it.  She’s not cured.  But there’s more hope today than there’s been in a long time.

The honest to goodness truth:
On my commute home today I asked my iPhone: “Do the Brewers play today?”
Siri responded with: “Now playing:  I saw God Today” (a George Strait song I have)

I got goose bumps, and thought to myself… “that’ll do just fine”.

Another Day, another set of tests, another appointment

Jen and I met with Dr Santana at 9am this morning to discuss last night's ER visit and consult on her pain.  None of the blood labs were remarkable, and her hemoglobin is up.  So there's nothing that points to the cause of pain there.  It was concluded that the pain could be from a number of causes some good (surprisingly) and some not so good.  It could be that the Xalkori is being very effective and the dead cancer cells are being filtered through the liver and various organs.  The system is simply being taxed removing all the cancer.  That would be a good pain.  Or, it could be a growing gallbladder issue.  While this isn't a serious problem, it's a complication that has to be dealt with in the midst of everything else.  Worst case scenario is it's a growing tumor.  

The only way to find out was to schedule a CT scan and an ultrasound of the gallbladder area.  Unfortunately, there was some reason why an ultrasound couldn't be scheduled if a CT scan was done of the same area.  So, we have to wait for the CT results to be read and if the results are inconclusive, an ultrasound will be performed.

The CT scan was performed at 2pm and finished around 3.  Another complete day spent at the hospital.  Another long day of sitting and thinking.  And since it was late in the day, the results couldn't be completed today. SO guess what?  We get to go in again tomorrow to get the results!  Yeah!! another lost morning!  And if the CT results are inconclusive, they'll order the ultrasound.  Could be another entirely out day for me.

Another concern is Jen's persistent nausea.  It could be from the cancer, the Xalkori, or the mix of medicines in her system.  Regardless of the cause, we need to get it under control.  She continues to lose weight.  If she's nauseous, she cant keep her Xalkori down, she can't keep food down, and we spiral downward in a bad cycle of missed treatments and weight loss.  So Dr Santana has her on a longer acting anti nausea drug Compazine.  We hope that this controls her stomach so she can get back to eating.

In the Front car

For the second day in a row Jen had severe pain and nausea issues in the morning. The downturn has caught me off-guard. We previously believed Jen and the kids could manage the day without someone here. The last two nights and mornings have proven otherwise. Jen talked to the oncology nurses about her changing symptoms, and they instructed her to get into the ER to rule out any immediately serious issues.

So, Jen and I spent the afternoon and evening in the Froedtert ER. Fun...real fun.

After waiting 3.5 hours just to get into a room at the ER, they did a chest x-ray, a full blood panel, and administered some serious pain killers. The result? They diagnosed that it was probably due to the cancer, convinced she won't die in the next 24 hours, and she should follow-up with Dr Santana as soon as possible. Wow. Super job guys. I realize your goal is to scan for immediate threatening conditions and shuffle people out.... But Seriously?

In any event we already have a rapidly scheduled appointment with DR Santana tomorrow for Jen's changing symptoms. My guess is they'll order a full set of ct and scans. I hope that's the case because we will have some evidence that the treatment is either working or not working. Otherwise we'll have to wait until the 23rd which was when the scans are supposed to be done. I don't want to wait that long.

The mental toll of this is beginning to show in Jen. She's beginning to break down emotionally, like I do when I'm alone. Evenings and mornings when we're alone are getting tough. Questions of why, what ifs, and the unfairness of it are common. I'm trying to be a rock about it and lift her up but it's difficult.

I've always liked to ride in the front car of roller-coasters. Once the bar comes down, there's nothing more you need to, or can, do. Up, down, whatever, you're on it until it gets to the end. You have so little input, you can close your eyes and raise your hands, and the outcome is the same. Holding on does nothing to affect the outcome, only your experience during the ride. It's so diametrically opposed from my normal "quantify and control" nature it teaches me that life is going to happen... regardless of what I think or want. 

The roller coaster seems to be going downhill for now. And we're definitely in the front car.

Dead Reckoning

There really hasn't been any major events in Jen's condition over the past week.  Her pain has migrated from her left to her lower right which is a bit of concerning.  We're not sure why.  But except for a few bouts of nausea here and there and pain now and then she continues to improve.  Or at least she's holding steady at this positive level of activity.   Dr Santana is convinced that it's due to the medication.  Whether it's due to the Xalkori, positive thinking/energy, or everyone's prayers I don't know.  Whatever it is we hope and pray that she continues to improve.

If someone were to see us right now they'd think we were lying about her cancer.  I honestly think that.  The kids seem unphased.  Most of the time Jen's doing the normal everyday things she did before. Laundry, cleaning, getting the kids to bed,etc.  The "normalcy" of it is surprising given the situation.  I keep asking myself, "Is this how it's like for everybody with cancer?"  Because she's doing this well, do we just keep going on like nothing significant is happeing?  Did the last few weeks really happen?  Are we spending enough time together?  Should I be more optimistic/pessimistic?  Should I be scheduling a family vacation cause she's improving, or hold back cause we don't know the future? ... It seems I have nothing but questions for everything

Jen's next CT scan is on the 23rd of July.  At that time they'll measure the tumors to confirm that the medication is indeed working.   Until that time, we just have to take it on faith that it is.

Somebody mentioned to me this is like flying on instruments.  I disagreed.  I'd consider the CT scans and all the labs "instruments".  This is like flying above the clouds with no panel.  Yeah, we're flying, we're under control, but we're going through each day just on dead reckoning.  Flying a heading, and when the 23rd comes around we'll decend back through the clouds and hope we recognize what's down there and can come up with a plan to deal with it.

We spent the 3rd and the 4th seeing relatives in northern Wisconsin.  Driving up on the evening of the 2nd we passed through one of the most violent rainstorms I've ever driven in.  The noise in the van was deafening, visibly was extremely reduced, and everyone was nervous whether or not we should stop or drive on through. This may sound crazy, but I saw it as the perfect metaphor for what the Engel family is experiencing right now.  The amount of stuff we're processing is deafening, we don't have visibility into the future, and everybody's scared.  I turned it into an unexpected teaching moment for the family, especially myself.  I drove through it, even though I was uneasy about it, because I knew what was waiting on the other side of the storm if we made it through.  I was right.  The whole family saw the rainbow just before we hit Oshkosh.  Good thing I was up front, otherwise the kids would have seen the tear.

A good portion of the stay involved bringing friends and relatives up to speed on Jen's condition.  The conversation is standard routine now....  yeah, it's stage four... yeah, it's hard to tell by looking at her... yes the kids know... and so on.  On the one hand you want them to know everything and answer all their questions,  but on the same token you're tired of answering them. It reminds you of the seriousness of it.  Kind of makes you feel guilty for wanting to withdraw and stop talking about it.

Because of the extreme heat she's been staying indoors.  She's the smart one.  I completely fried myself.  For a little while I let go and was completely absorbed with the kids out on the lake.  Unfortunately, that meant I forgot to put on sunscreen.  Since I was in and out of the water I didn't realize how burnt I was. ouch.

Last weekend I spent some time with a trusted friend talking about our respective situations.  It was reassuring to hear that someone else was successfully navigating their "messy" situation.   You know who you are.  Thanks.

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.