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.

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?