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.