What He Doesn't Let You See

Last Thursday as I was leaving the senate hearing, I was walking out with Representative Kevin Parker.  I was there to testify on our Cancer Can’t Charitable Pharmacy bill with Jonathan, the only problem was that Jonathan was in so much pain that he was getting nauseous and was feeling like he may pass out.  Or he had taken so much pain medicine that he was getting those symptoms… Either way, he sat in the truck while I went into the senate hearing alone.  Kevin was reassuring me that I did a good job, because he knew I was a bit nervous.  Jonathan and I planned our testimony together and I simply just had to wing it!  As I was leaving Kevin said to me, “You know Jonathan never really gives me any signs that he is in pain or that he doesn’t feel well.”

As we were driving home that day I started to think about what Kevin said.  My aunt once told me the same thing.  They came to visit and upon leaving Jon says, “I think we need to go to the ER.”  But my aunt and uncle had no idea he was that sick… he just tries so hard to be the normal Jonathan we all know and love.  I sometimes get frustrated with him because he doesn’t tell people the truth about how he is feeling.  A couple weeks ago he had a breakfast date with a friend.  He felt absolutely awful.  He didn’t cancel though, he got out of bed just in time to make it there and then got right back in bed as soon as he got home.  I’m certain he joked and smiled as if he was just feeling peachy!  But I understand why he does it.  When he was very first diagnosed every time we saw someone they gave us the puppy dog look and the pity conversation ensued.  Jonathan often would just rudely walk away.  It wasn’t him.  He didn’t want pity and he certainly didn’t want people to treat him any differently.  Jonathan jokes, he laughs, he serves others, he is active and works hard.  That’s who he is, and who he wants to be… Not that sick guy with cancer.

It is so hard to sit and watch him in pain.  I feel so helpless and we’ve had our own screaming match about me treating him like a patient.  This role of being his wife and caretaker isn’t easy.  He wants his wife, and for me to treat him as I always did.  I think he gets frustrated that he even needs a caretaker and has to even ask for help.  I watched Jonathan’s mom in the midst of this exact struggle this week when we stayed with her.  She could tell he wasn’t feeling well, and she wants to help.  But really what can she do?  So as we sat to watch a movie, she would ask “Do you want a blanket, do you need some water, can I get you a snack, I will make you some tea…”  I think her next offer was to massage his feet and trim his nails!  I finally laughed and teased her about it.  But I know how she feels.  It was just interesting for me to sit and watch it from a different perspective… Every time she said something it was just a reminder he wasn’t feeling well.  She was sweet and helpful before cancer, but not quite like this.  If he can forget for 5 minutes that he has cancer, he doesn’t want someone else to remind him!  He doesn’t want to be treated different.  So he puts on a happy face and doesn’t let anyone know how he really is feeling.

Prime example:  Kevin texted him as we were driving home to check on him.  He was sleeping most of the trip in the back seat trying to fight through the pain.  But when Kevin texted, this was the picture he sent back! 

So the truth, Jonathan feels awful.  The pain is becoming unbearable and he is starting to hide out at home so he doesn’t have to lie about how he is feeling.  It is becoming harder each day to pretend.  We were supposed to be on a plane to Vegas today with Scott and Heidi for another bucket list item.  (He wants to drive an exotic car)  But we didn’t feel like he would be able to sit in an air plane… So Scott and Heidi boarded the plane today without us!  We moved up surgery to Tuesday for Jonathan to have his pain pump put in on that morning.  He just can’t take it anymore.  This is what our mornings consist of now.  He didn’t know I snapped a photo, but he can’t sit because it hurts too bad.  So he Stands to eat at times and tries to fight through the pain.

He is starting to get bouts of nausea randomly through the day.  We aren’t sure why because he has never had a problem with pain pills before.  His heart rate is slowly rising.  He has lost feeling in his left foot.  Yesterday Jonathan had to walk away from the breakfast table because he was beginning to get a bit emotional.  He is just so tired of feeling sick.  I know his mind is probably where mine is.  That tumor is growing… Is there another reason why he is feeling nauseous?  Where else is it spreading to?

We are really hoping that this pain pump will help with his pain and we can get back to a little bit of normal life.  On Thursday he has his next infusion probably right after we leave the hospital.  We will schedule his next scan at that time.  I would guess it will be in the next 3 weeks.  That will have given the Dr. in Houston 6 weeks to grow the next infusion we will try.  We can still hope that this current treatment is working, however we are pretty certain it isn’t.  We can see the tumor growing in his hip, and Jonathan is starting to get chest pain around his sternum.  So at this point we really are praying that the tumor burden hasn’t spread so much that we can’t get into the Houston trial now.  If we happen to get good scan results, we would be very pleasantly surprised. 

Please pray that this pain pump works effectively for Jonathan.  I’ve been having random bouts of crying when I hear a certain song, or when I’m driving by myself.  I guess it just feels like things are getting worse.  BUT we are not giving up.  We are still praying for our miracle and trying to enjoy the minutes we have.  We would just like to have quality minutes back.  Minutes with the Jonathan that isn’t in constant pain.  Thank you all for your thoughts and prayers.  We really appreciate it.  

Painful

Jonathan and I are at the doctor’s office today.  It is time for another infusion.  So I decided to bring my computer and as I sit here I thought I would give you all an update on how things have been going. 

Painful!  I think for my last blog I told everyone that Jonathan’s tumor was bigger, however I didn’t really explain what bigger meant.  Before we started on this trial drug the tumor in his hip was 5 centimeters in diameter.  That is about the same size as a plum.  In the last scan, the tumor was measuring at 10 cm, which is about as big as 4”.  Just before leaving to Hawaii Jonathan was beginning to need stronger pain meds than just what he could get over the counter.  He was losing range of motion in that leg to the point that he can no longer put on shoes or socks.  So I’m now helping him get dressed every day.  It has become very hard to watch the amount of pain he is in on a daily basis.  He cannot go to sleep because he hurts too bad, so I try to stay up with him and watch tv.  He tosses and turns all night and when I left for the gym yesterday he was lying face down on the bed trying to fight through the pain until the next oxy kicked in. 

We sort of have been arguing about this lately.  I don’t know why he thinks he needs to be such a “guy” about the pain.  He obviously is not taking enough pain meds to properly manage the pain, but he just hates taking pills.  I don’t know if he thinks he is afraid to get addicted or what?  I say if we come out the other side of this and he is alive but addicted to oxy, that would be a wonderful problem to have and I would welcome it with open arms!  So today I asked the doctor about information on a pain pump.  We went over what Jonathan is taking and how ineffective it is.  We now have an appointment with a pain specialist and most likely Jonathan will have a minor surgery to be getting a permanent pain pump put in.  The sooner the better!  We need sleep! 

We also got word after his blood draw that Jonathan’s thyroid is beginning to elevate.  He has been really tired but he also can’t sleep.  So he will start taking medication for his thyroid now as well.   This is a known side effect that can happen from the Keytruda.  He told me today once his thyroid gets figured out, his hair will grow back and his libido will hit a whole new level… so I better watch out!  We also are having trouble getting this other medication added to the keytruda regimen.  Our insurance has to apparently deny the claim in a certain way that would allow a grant to pick up the cost.  Our insurance isn’t doing that… and to order the drug it is over $100,000 per treatment.  Not in our budget.  But we will get it sorted out.  Hopefully soon!

Last night I was sort of doing my own medical exam of his tumor… I’m weird, but that is old news!  I just want to know how everything looks and what changes I notice so I can be on top of it.  His left butt cheek is now significantly bigger than the right and I’m guessing we have way exceeded 10 cm in size.  I can feel the tumor from about 2” below his hip bone all the way down to about 2” below his butt cheek.  It has also now spread to his groin area on the front.  I’m starting to wonder at what point this tumor is going to cause his entire hip to dislocate! 

We have been communicating with Dr. Wang out of Houston and have begun the process to get into that trial.  Jonathan had a significant amount of blood drawn on Monday which we overnighted to Houston for them to begin growing the virus cells.  (I’ll explain the process the best I can)  Jonathan has had the chicken pox as a kid.  So his body already has a “t-cell” antibody that will recognize chickenpox and fight it off.  This trial will take that cell, and then train it to recognize the cancer and attack it as if it were chickenpox.  This process of growing/training these cells takes about 6 to 8 weeks to do.  So in about 2 more infusions we will scan again.  Depending on the results, we will pick up and move to Houston, or Dr. Wang has agreed to freeze the cells if we decide to continue on this current path with Keytruda.  I think Jonathan and I are preparing ourselves that we will be in Texas by April.

We are also preparing the kids the best we can, but they don’t want to go.  I don’t think they understand it is temporary.  Jude tells me every day that he really loves our house.  Then he asks me if I love our house too. He asks a lot of questions actually… at breakfast he asked if I would hold his hand.  So I did.  Then he said to me, “Mom if I hold your hand and you die, does that mean I can go to heaven with you?”  He asks lots of questions about heaven… we have assured him you can have as much candy as you want there and that there are no sugar bugs in heaven so you don’t have to brush your teeth.  I remember when Jax was at this age though.  When Jonathan was very first diagnosed with cancer, Jax was 4.  He asked us to read the story of the crucifixion every night for a month.  These poor boys… we try so hard to have a normal home life for them.  However, I doubt many other 4 year olds are so obsessed with questions about heaven and dying. 

 On a completely separate note, we are staying very busy with Cancer Can’t.  We have set a date for this year’s golf tourn, dinner and auction.  The WSU football schedule came out and the game is out of town on September 10^th.  So mark that day on your calendars!  Our “Cancer Can’t Charitable Pharmacy Act” is working its way through Olympia.  Things are looking really positive so far.  We know anything can go sideways at any moment, but we will hopefully know by beginning of March if our bill has passed.  We can then begin planning on implementation of this new program.  Our board is working on developing programs to serve oncology patients in the Inland Northwest and I feel like I’m having meetings of some form every other day.  We are trying to be very thoughtful about what we are doing and that the money we spend will make a great impact.  From the day Jonathan and I decided to start Cancer Can’t we began praying that what we would do would serve both God and others.  I often say how shocked I am at the support we are getting for Cancer Can’t.  However, It is very clear to Jonathan and I that God has showed up here.  He is driving this car, we seem to just be adding the gas here and there.  With that being said, I was contacted by the American Cancer Society today to let us know they were throwing all of their resources at our bill and it has been approved in their budget to get this bill passed.  We then spoke to their lobbying attorney and I’m meeting for coffee next week with a manager from the American Cancer Society Action Network.  It is really awesome to get this level of support from such a big organization. 

Every morning at breakfast Jonathan does a verse of the day with the boys.  Jonathan reads the verse, then asks the boys what they think it means.  Often Jax says “I have no idea!” We go on to explain what we think the verse means and then we talk about how we could follow the verse that day.  It really is great breakfast conversation with the boys.  Today’s conversation was meant to happen.  Philippians 4:6 “Do not be anxious about anything, but in every situation by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  I think our anxiety is a little different than the boy’s, but our instruction is the same.  

No Tears today!

Yesterday was rough!  Jonathan and I each had a few break downs with bouts of nervous tears.  We have had a lot going on in the last couple of days.  There is the obvious scan, life and death type stuff, but also a bunch of doctor drama with horrible things happening to dr. Raj.  We have been so busy enjoying our minutes and pretending like we have a wonderful life, we just aren't prepared to be told to call hospice.  We just lost a friend in the matter of 3 weeks after being told he had a bad scan and he should make that call.  BUT I think the reality is, we are never going to be ready for that news.  There will never be enough quality of life!  Ever.

Yesterday I reached out to our attorney after an article was published about our beloved Dr. Raj.  In my last post I told you I felt like something fishy was going on.  I knew more and still know more than I'm comfortable publically sharing, but as a patient Jonathan and I are very very unhappy about what has happened here.  At our last infusion Jonathan and I were told that Raj just resigned and left.  We know Raj well enough to know he would never do that to us.  Well at least not without talking to us about it and explaining circumstances and ensuring our care and information was being handled properly. 

On Monday night I had a friend contact me and send me a spokesman review article.  This article basically stated that Raj lied about passing his boards and forged documents stating such.  It has an interview of his employer and owner of the practice sharing all the details of the report he had filed with the medical commission.  Now I understand that IF in fact Dr. Raj had lied and forged documents, that would be something an employer would and should report to the medical commission.  BUT there are some major problems here for us as patients.  Jonathan and I as you know do our due diligence.  We went and actually found the case at the Washington State health department website filed against Dr. Raj.  This document states the Raj was hired in 2013.  At that time Dr. Raj verbally claimed he had passed his boards.  In 2014 he was asked to provide documentation of such, he then provided a forged document because he again failed his boards for a second time in 2014.  He also provided a forged philosophy degree from Rutgers.  So Jonathan and I of course just went looking further online to see if Raj did in fact pass his boards.  It took less than 5 minutes for us to find this information online.  Dr. Raj passed his internal medicine boards in 2010 and his medical oncology boards in 2015.

Now here are some red flags we have with this entire situation.  We may know more about this situation than the average joe as Jonathan's job was to provide loans to people.  He specialized in physician loans and often read physician contracts.  It is rare for a doctor coming out of med school to have passed their boards.  It is typically written into a contract with a time frame.  He said normally it is 3 years.  Sometimes 7 years.  AND as we understand, you legally don't even have to pass your boards to practice.  You just can't claim to be board certified and I'm assuming that makes a difference in a physicians pay.    So it seems fishy to us that Raj would even need to have to lie in 2013 that he passed his boards.  No practice would expect a dr. right out of med school to have passed those already.  Next about a forged document, why would a employer ask an employee for this document or just rely on their word without calling the state to verify?  It took us less than 5 minutes to find in state records when he passed his test.  Red Flag.  This is just my opinion but this doesn't seem plausible.  But maybe I'm missing facts about this process?  Lastly why would he need to lie about a philosophy degree?  That isn't even related to his medical degree.

Nevertheless, now there is this news article out there that many of Raj's patients are getting tagged on through social media.  Saying "hey isn't this your Doctor?"  As if being in the middle of a cancer battle isn't stress enough?  Now we have people all over our town gossiping about if we were getting proper care without even knowing our doctor or the entire story by doing their due diligence.  It is hurtful and adding extra stress.  Which raises the question how did the Spokaneman even know about this?  To find this report on the health department website we had to actually type in Raj's full name.  So are you telling me staff at the spokesman are typing in every doctors name in our area?  No Way!  Someone gave them that report!  Then the owner of the practice proceeded to comment telling all the details about what he turned Raj in for.  As a patient of his practice, we feel he should have said Raj is a good doctor and all of his patients were in good care and beyond that, I have no comment.  Instead he is causing patient panic by making them think they had an unqualified doctor who is a liar and didn't pass proper tests.  No offense but less educated people out there may jump to a conclusion that a doctor not board certified is unfit to practice completely unaware that it is common for doctors to not pass boards 1, 2 and 3 tries around.  AND that you don't even legally need to pass boards to practice.  It is leading the public to believe something horrible happened when in fact the mistake made here would be only a lie that put no one in danger.  He made a mistake and the commission will take appropriate action.  But he still gave amazing care. 

Now we are patients feeling like we are out in the wind without a doctor days before we have the biggest scan of our lives.  Raj was not given the opportunity to transition his patients and new doctors were not given the opportunity to get fully briefed on each case.  Shoot as Jonathan went in for the scan, he had to stop the nurse to ask if his kidneys were at a safe level to handle the dye.  No doctor had looked at his labs, so the scan was delayed as the nurse found a practitioner to check the lab results.  This wouldn't have happened had we had a doctor closely monitoring our care!  So on Tuesday Jonathan changed his appointment to a doctor we researched and knew was better equipped to handle Jonathan's case.  So long story short (or long) this Dr. Raj thing is really messed up.  I want to believe he didn't lie, I just don't think he would.  He is a good person.  But I also know people make mistakes, and even IF he did, this has been handled entirely inappropriately.  I mean these are peoples lives, and yes we are upset about it!

So, the new doctor.  Actually we feel very confident in our new doctor.  We had actually researched him when jonathan was first diagnosed 2 years ago.  At the time he had a practice in post falls and is known for his sarcoma research.  We did not go to him then because we felt that we wanted to get chemo in Spokane, and this doctor did not have privileges at Sacred Heart.  Because we had great doctors in Seattle we could work with doctors in Spokane and all work together.  Medical Oncology Associates has since purchased Doctor Samuals practice our of Post Falls.  So now we will be traveling to post Falls to see this doctor.  If there is an emergency and we land in the Spokane hospital we will simply have to be in the care of a hospitalist and personally work with dr. samuals over the phone I guess. 

We did see Doctor Samuals today and felt very comfortable with him.  He was very knowledgeable about Jonathan's type of cancer and the complexity of the trial drugs.  He even had our plan C ready.  So here is how the scans went...

Reading scans with immunotherapy is very complicated. The imaging technology has not caught up with the treatment.  Typically with chemo if a tumor has grown it would indicate that treatment isn't working.  With immune therapy, especially in the first few scans growth can be good or bad. It can mean it isn't working or it can mean it is filling with immune type cells causing swelling and is working.  

 

We were expecting to see growth in his hip and in fact there is growth.  Dr. Samuals feels like he is also seeing some death within the tumor.  He said there is one new spot on Jonathan's lung and now a lymph in his abdomen showing growth. This is tricky because the new spot on his lung could have already been there but too small to see on a scan.  Now that it might be "swelling" it is visible on a scan.  Or it could just be new!  Typically osteosarcoma does not spread to lymph so it could be something that isn't cancer, or it could be.  

 

We personally feel like these are positive scan results.  We know that in 1 month from July to August he went from no mets on his lungs to 6 spots.  He has now gone 4 months with new 1 spot.  We know this is fast growing so to see this result we would like to think this means a stable scan at the very least.  

 

This new doctor said they are seeing positive results in adding another immune therapy drug to the Keytruda.  So we are applying for another compassionate use and will hopefully be adding another immunotherapy drug in conjunction with Keytruda.  We have already spoke to Dr. Wang at Baylor and she feels like we should stay the course and feels that adding this other immunotherapy drug is a good idea.  There is one bad thing... She said her trial will most likely be closed in a few months as the final spots are filling up.  So, now that we aren't joining the trial, it may not be there as a plan B if our next scan is bad.  But it might be. 

 

So to conclude, there have been no tears today.  I did set the garbage can at me feet during the appointment just incase.  But I made it through without throwing up.  I can not tell you how incredibly hard this is on those scan days.  So now we can go back to pretending we have a wonderful life until the next scan 3 months from now!  I can not thank you enough for all the prayers.  Jax's teacher asked me the other day how I was even up right... I told her God just gives us enough grace each day.  I feel that is because of all of you praying. 

 

 

I had someone post this on my wall over a year ago.  But after this week we've had I've thought this many times.  Jonathan and I even both admitted we had thoughts that we sort of hoped the plane would crash on the way home.  At least we would all be together.  This is absolutely no fun, and God is pushing me to my limit, we will just leave it at that!

Back To Reality...

Tonight I am writing this blog as I sit on the airplane on our way home from Kauai.  Jude told us he wanted to go to Hawaii for his 4^th birthday, Jonathan and I had no objections.  Considering what was to lay ahead of us, we wanted to have some fun with our entire family.  We did have an amazing trip!  But I’m sick to my stomach that I now am headed home back to real life.

In the last 9 months I feel so grateful that we were able to have 6 really wonderful months with the boys.  We did have a really horrible 3 months in the middle, but quality of life is a very real thing.  Today I do not regret our decision to stop chemo and try something different.  Jonathan and our family are successfully making the very best of every minute we are given.  I’m so grateful that we have been blessed with the ability to do this.  There have been some wonderful people in our life that have assisted us in fulfilling bucket list items, or just giving us needed encouragement.  We are experiencing the definition of quality life.

Before we left for Hawaii, we had a good and bad Christmas.  We have had a great time in the snow with our boys and got to see a wonderful white Christmas that we spent with our entire family.  But I heard my niece tell me a quote as she was joking about selecting colleges.  “Fake it ‘til you make it!” she said.  I totally know what she means.  Jonathan and I had had a very sad week leading up to Christmas, and truth be told, we were sort of faking it through Christmas…  We had a couple hard hits just before Christmas, and today as we come home to reality, the hits keep coming.

About a week before Christmas we got a call from our new friends, the Davis family.  Ryan is a few years older than Jonathan and has been fighting osteosarcoma for almost 4 years.  We instantly connected with them as friends as we finally met someone that so deeply knew what we were going through.  They were an amazing family with amazing hope and love for God.  They told us just before Christmas that Ryan’s last scans were very bad.  They had been told to call hospice.  By Christmas day they had drained 10 liters of fluid from his abdomen in a 5 day time.  Today as Jonathan and I boarded our plane to come home we got word that Ryan no longer was in pain and has gone home to be with our heavenly father.  He has an incredible wife, and 3 children.  I am heartbroken for their family, and I cannot tell you how hard this is for Jonathan and I.  We fear this is a glimpse into our future.  (If you could please say an extra prayer for the Davis family tonight)  He had 1 month from his very bad scan…

We also have been struggling with other bad news.  3 days before Christmas I got a text from a fellow cancer patient’s father.  “Did you hear Dr. Raj just quit?”  Yep that’s right, Jonathan’s oncologist for the last 2 years is no longer our doctor.  With that being said I know he wouldn’t just quit without talking to us.  Something is up, but nevertheless, we are going to have to figure out this hurdle.  To be honest, this is also really bothering me.  Dr. Raj is more than just our dr.  He has become a friend.  He knows our kids, he really knows us, and he cares about Jonathan.  I know there are other doctors, but right now as we enter this hard stage, I feel alone without Dr. Raj on our team. 

So after a wonderful Christmas Eve, and a wonderful Christmas day, I put my 3 boys to bed and I went back out into the living room.  Then I had a little break down, as I sat with my dad and just cried.  I don’t want to do this anymore.  I had a feeling Ryan would not be with us when we got home.  Hearing about everything they were experiencing is terrifying.  I knew we had this wonderful trip planned to Hawaii with our family, but the day after we come home Jonathan is getting scanned again.  I always feel sick around scan time… and oh, we don’t know who our doctor is that is going to tell us the most important info in our life!  We do know that the Drs in Houston have all of Jonathan’s test results.  If his scans are not good, we will be sending the scans to Houston for them to review and hopefully accept Jonathan as a candidate for their trial drug.  If his tumor burden is too high, or in a place that a side effect such as swelling would cause a fatality, they will not accept him into the study.  At this point, we have no plan C.

I will post again after we have time to digest Jonathan’s scan results and potentially have a plan.  Please pray with us for positive news that this trial drug is working.  It has been wonderful so far, and Jonathan has only just began to experience side effects this last round.  They were similar to food poisoning and only lasted 2 days.  That is doable compared to chemo… and he has only had that once in 3 months! 

I will leave you with 2 significant pictures from our vacation!  Two of Jonathan's bucket list items were marked off on our trip.  The first, take a helicopter ride with our boys.  The second, swim in a waterfall with the boys.  Thank you for your prayers over the coming days.  We really do appreciate it!

Ignorance is Bliss

I haven’t been writing blogs as frequently the last couple months.  Things have really been going so well that I haven’t wanted to sit down to write.  Life almost feels normal again.  Jonathan almost feels normal!  The kid’s behavior feels normal… Or at least we aren’t praying about cancer every night.  They are back to praying about normal things like nightmares.  Which is fine with us… it’s painful to know that cancer was consuming so much of their thoughts.  It’s such a relief to see them almost get to be normal kids.  It is so hard not to read into everything they do though.  Jude has been pretty clingy lately.  Never wants me to leave and always wants to know exactly how many minutes until I will return.  Probably normal for a 3 year old, but of course I psycho analyze it.  Is he understanding on some level the ultimate fate of his daddy and so he is clinging to me? 

Tomorrow will be Jonathan’s third trial infusion.  As I write this blog, he isn’t even home.  I sent him off on another bucket list trip just after Thanksgiving.  A boys golf trip in California where he gets to play a few courses most all real golfers will most likely never get to cross off their list.  He will get home around midnight and checks in to the doctor first thing in the morning.  He has to remind me sometimes to enjoy my minutes and not focus on the bad.  He truly is living that every day and successfully squeezing everything good out of the minutes he has. 

He still has not had any side effects from the trial drug that we know of.  He could do this forever if he had to… If we could be so lucky.  Last time we met with Jonathan’s oncologist we began looking at the calendar to schedule his next set of scans.  D day if you will.  His scan should be around December 14^th.  I was actually so relieved when Dr. Raj said, well you know what, “why don’t we do an extra infusion and just wait until after Christmas?”  Our life right now is the exact definition of the saying ‘ignorance is bliss.’  If we did not get good news, it would ruin our Christmas.  I would be working on arrangements to moving us to Texas most likely to try to get into this other trial out of Berkley.  I think we all would just rather not know.  He is doing so well, at least it seems like he is.

I’ve asked him a few times if he has any feelings about what he thinks is happening inside his body.  How does he feel?  He said he has pain at the tumor site in the hip.  But it isn’t something that IBProfin can’t manage.  That wasn’t the case in July and August.  He has enough range of motion still that he can tie his own shoe.  Again that wasn’t the case when we found the second tumor.  He gained that range of motion back during those 2 rounds of chemo… He has maintained his mobility at the very least.  He says he still feels nothing in his chest.  I have no idea if you can feel lung spots though?  I haven’t asked or researched that.  But not feeling anything can’t be a bad sign right?  So we are going to stay the course!  We are going to enjoy our Christmas, watch our youngest son turn 4 and then cross off a few more bucket list items before we get that dreaded scan.  It is looking like that will happen around the second week of January now. 

Jonathan called me on the phone 2 nights ago to tell me about his golf round for the day.  I wanted to share a story he shared with me.  It brought tears to my eyes as I talked to him.  First of all, he was so excited.  I could just tell by his voice that he was just in awe that he actually was getting to play his dream course.  I asked how he played.  He said he actually played very well for the first 7 holes.  It is almost like the course designer made it easy to get your hopes up and then puts you in your place.  I said, “so I take it you didn’t finish well?”  He said it didn’t even matter.  The weather was perfect, not a cloud in the sky and it was just amazing to get to play.  I asked how his best friend Scott played.  (I hope Scott doesn’t mind me sharing this)  Jonathan told me that Scott started off not so good so he just stoped keeping score.  This right there is so much of why I love Scott.  He just gets it!  He gets Jonathan.  He decided to walk the course that day so he could take everything in with each step.  It didn’t matter what his score was.  But Jonathan said as he approached Scott on the 18^th green, Scott had tears in his eyes.  I can only imagine he gave Jonathan a big brother type hug and I’m so glad that he was there with Jonathan.  He completely enjoyed his minutes and he didn’t let anything stop him from doing that.  He had to make a conscious choice though to make sure that happened.  So many times we think the score matters, but it doesn’t.  It’s the view, it’s the people you are with, it is the opportunity.  Scott if you read this.  I love you!  And thank you!  And Kevin, there are no words. 

On our drive to my parents for thanksgiving Jonathan and I were chatting about things we were thankful for.  You know as horrible as this entire situation is, because horrible doesn’t even begin to tough the service, there are still things to be grateful for.  I told him I feel like we are living the actual Tim McGraw song “Live like you are dying.”  If you have to go young, I’m grateful that we have been able to live intentionally.  Many people will live until they are 70 or 60 and still think they have plenty of time.  So they don’t go live.  And if I get me answer to prayer, I promise you, we will be “living” for the next 40 years. 

As I talk about thankfulness, I read a book a couple months ago that our pastor recommended.  “The Joy in the Journey.”  Sharol brought up this scripture that I really try to remind myself of frequently.  As I talk about my fears and everything that we have been through and may lie ahead, this helps!  2 Corinthians 12:9 “My grace is sufficient for you, for power is made perfect in weakness.”   I had an old friend remind me recently it is ok to be weak sometimes.  

(We had to pull over so the boys could have their first snow ball fight of the winter... yep we are on an off ramp!)

What Quality of Life Looks Like!

I’m starting to get emails and texts again asking how things are going for Jonathan.  It is so nice to know people are thinking of us and praying for us constantly.  So I will give you all a quick update.

Jonathan started his trial drug on October 21^st.  Unlike our usual treatments we were able to go to our doctor’s office instead of the hospital.  They drew blood and then we met with Dr. Raj to review the side effects one more time.  He handed us 4 pages of possible side effects Jonathan could experience.  Most of these side effects looked similar to chemotherapy actually.  Nausea, diarrhea, losing liver function, losing function of his pituitary gland, loss of eye site, pain and redness at the tumor site, and on and on and on.  We know they have to list every single side effect ever experienced, but know through extensive research that most people handle this drug very well.  It is actually completely the opposite of chemo therapy!

The doctor told us that stopping chemo could cause it to be less effective if we were to go back to it at a later date and reminded us that he thinks we should keep trying chemo until it becomes ineffective.  We told him we understand what we are doing and let’s proceed with the trial drug. 

To be honest, it is so much easier coming to a logical plan of choosing quality of life, rather than actually doing it.  Before going to this doctor’s appointment, I was having a hard time.  I often am trying so hard to enjoy my minutes and helping my children enjoy their minutes that I don’t take time to tell people how incredibly hard this actually is.  We have a family friend that cleans our house each week.  She told me the only way she knows how I’m really doing is by how many tissues she is picking up from the bedside each week.  There were a lot of tissues last week.  The thought of actually changing our course of action to “quality of life” was really hard on me.  I let myself go down that road of when these fun bucket list trips with Jonathan stop.  We met with our financial advisor to look at what my financial situation will look like when I don’t have my husband.  I take one of my children to play therapy once a week preparing a relationship for them to have someone to talk to when they lose their daddy.  I’ve compiled a list of conversations I’m terrified to have with my boys because I’m their mom and it needs to come from their dad.  Jonathan is working on now writing them letters for me to give them each year.  I am praying every day that this trial is our miracle.  But we are living our reality that it probably won’t be.  We are doing a great job of enjoying ourselves and doing everything we want to do together.  We will have no regrets!  And we honestly aren’t crying every day and are successfully enjoying each day.  But we still allow ourselves bad days too.  The night before he started the trial was a bad night…

(What Quality Life Looks Like... And Jonathan was not in the hospital and got to see all of it!)

Went to a Cougar Game

 

 Halloween

Making Sugar Cookies (OR playing in flour)

 

After we were finished with the doctor we headed out to the nice room with recliner chairs and big windows.  The nurses told us Jonathan’s white blood cell counts were still actually kind of low but since this isn’t going to effect that, onward and upward.  It took 30 minutes and he was done.  He said he felt totally fine.  He even drove home.  Later that afternoon his face got a bit flush and he decided he wanted to take a nap.  He got up, did the dishes, played with the kids, ate dinner normally and seemed totally fine.  The next day he said he felt totally normal!  No side effects.  Now that is has been over a week, he has started getting some pain in his hip.  It is hard to tell if it is the tumor growing or the immune therapy killing the tumor.  I sure hope the latter. 

 

Jonathan has been golfing 3 times since last Wednesday and is doing great overall.  He is back to pre- cancer weight and looks good!  He has started coming to the gym with me again in the morning and has been able to do a cardio machine for 25 minutes before he moves on to the weights.  His pulse rate is doing much better and is getting lower than it has been in 18 months now. 

We have been very busy with Cancer Can’t stuff again.  We’ve been working on thank you emails/cards.  I’ve been gathering samples for my meeting with the hospital and are getting excited to see that start to come together.  We are working on our charitable pharmacy project and have been meeting with new board members, law makers, attorneys and physicians.  We feel good that we are able to spend our time working to help other cancer patients.  I guess it feels good to have a purpose.  We are also very honored that Cancer Can’t was selected to be the recipient for the SamScramble funds this year.  If you can, on New Years day, please go participate with your family in such a fun and meaningful event.  Go to: https://sites.google.com/site/samscramble/home  to register.

Please be praying that this trial is working, and is actually effectively shrinking Jonathan’s tumors.  Or even just stopping its growth.  I know God is giving us so much strength that we are able to enjoy each day.  I pray all the time for this type of strength.  Please also pray that Jonathan has little to no symptoms as we continue on this trial.  So far so good!

Jonathan was accepted into a Trial!!

Last Wednesday morning Jax woke up and you could just tell he woke up on the wrong side of the bed.  I asked him to get dressed for school and he decides his pants didn’t feel right.  So we changed his pants 3 times.  Then as he sat and ate breakfast he was mean mugging Jude the entire time.  He was rude to me and just mean to Jude.  So as I sat down to eat my eggs with the boys, I began to have a little talk with Jax.  I explained how each day when we wake up we make a choice.  We decide if we are going to be happy and enjoy our day, or we can decide if we are going to be grumpy.  If we choose to be grumpy our days usually are going to go much worse than if we chose to be happy.  People don’t want to be around you and include you in fun things if you are grumpy.  I asked if he thought if he could choose to be happy today instead of grumpy.  He sat there for a few minutes and then began to smile.  He said he wanted to be happy and we then began to joke, laugh and have a much better day. 

I feel like this is a choice I am consciously making every day myself.  If I decide to focus on the things that make me sad, it effects my entire day.  So Jonathan and I are really trying to spend each day consciously choosing how our day is going to go.  How we are going to look at each day and what attitude we are going to have.  One day Jonathan actually said to me, “I’m not going to die today, so why are we wasting our day on crying?”  As a result we are choosing to enjoy each day to the fullest. 

So today I am writing this blog from the New York JFK airport terminal.  Jonathan and I just had the most incredible week!  When Jonathan’s cancer came back, he made a bucket list of things he would like to do.  Some of them I laughed at, and others we decided to make happen.  If you know Jonathan well, you can just guess what type of items he would include that I would just laugh at… No need to explain.  Anyway, seeing Time Square in New York was on his list.  So I booked the airline tickets around treatments.  I then called my cousin who just started working here in NYC and told him to plan amazing activities for us.  And did he ever!  Most people can live 90 years and never do any of the things we got to do this week.  I don’t need to list out our entire trip, but the stand out event was our Tuesday dinner. 

When we arrived we were greeted by a guy that had our name and the entire reservation list memorized.  This was the first time we have ever had a maître d’.  It was amazing!  We had a 14 course meal with wine on the menu that costs more than my car.  When I got up to use the restroom, the maître d’ walked me there, and each employee you walk past, bows at you.  Enough said!  Luckily by the end of the evening we found out our maître d’ was a lower middle class kid from Brooklynn and he actually loved our inappropriate humor and the fact that we had no idea how to use a French sauce spoon.    In fact for our parting gift, he gave us each a real silver French sauce spoon wrapped with a bow and printed for us, on very nice paper the history of this absurd slightly useless sauce spoon.  Our evening ended with us joking around with Questlove, the drummer on Jimmy Fallon, about throwing knives at this birthday balloon that escaped from a guest.  Oh and yes, we did have escargot!  Growing up I always had escargot in my mind as the food rich people ate.  We were so far out of our league at this restaurant but it was an absolutely incredible experience.  This night along with seeing a live Jimmy Fallon show and box suite seats at a New York Giants game.  The week could not have been more fun.

So now we are on our way back home to see our beautiful boys AND to officially start a medical trial drug.  Yep, Jonathan was accepted for compassionate use of the drug out of Duke.  Today we met with Dr. Raj and will discuss our decision of starting the drug.  When we were leaving for New York he called to chat with us about Jonathan’s scan results from the chemo.  After completing 2 rounds of the ifos etop drugs they scan to see if you are responding.  To refresh your memory, roughly 25% of osteosarcoma patients respond to this chemo regiment.  Of that 25%, for only 5% of those, this option is curative.  And curative only in conjunction with surgery.  For Jonathan, that means loosing his leg and now a double lung surgery.  (which would be very hard to even find a surgeon who would do that!)  So the results… the tumor in his pelvis did in fact shrink.  The multiple tumors in his lungs are stable and unchanged.  So now we know we fall within that 25%.  However because the lungs didn’t change, we assume we do not fall within the 5%.  (This is what Jonathan and I are concluding)  Our oncologist is on the train of thought that we continue chemo as long as it is responding.  It will buy us more time.  We are not on that same train!  We know we have been approved to start the use of this trial drug from Duke and know that this drug has far less side effects than chemo.  We don’t know if it will be effective or not, but at least it offers Jonathan some quality of life.  So today we learned Jonathan is approved to start the trial on Wednesday. 

The drug from Duke is a phase 2 trial drug called Keytruda.  Jonathan was approved to use it here in Spokane, and our oncologist can administer it.  This drug uses immunotherapy but no virus.  The Houston trial that we are still waiting to hear from uses the chicken pox virus.  The way this drug works to the best of my knowledge is the following:

The reason your body’s immune system does not try to kill cancer is because it is technically your own body.  It is an over production of your own cells.  But because it is still your own cells your immune system is told not to attack it.  This drug is designed to block the mechanism on the cancer cell that is telling your immune system that it isn’t foreign.  If this works effectively, your own immune system will begin to attack the cancer.  The side effects include pain and swelling at the site of the tumor, slight nausea and diarrhea for a couple days after the infusion.  There are some risks of liver toxicity, and adrenal side effects.  There are other uncommon ones, but nothing like chemo!  Jonathan will be getting an infusion of this drug every 21 days.  It is a 30 minute infusion that can happen at the doctor’s office.

Thank you to those of you who have been tirelessly praying for Jonathan to get accepted to use a trial immunotherapy drug.  This is potentially huge for him.  We would like to ask for more prayers.  We would love for this drug to work effectively for him.  We also are hoping for very few side effects.  Pain maybe will be welcomed, because typically that means it is working!  But little nausea etc. would be awesome.  Something that would allow Jonathan to have some quality of life while fighting this.  We hear most people breeze through this treatment.  And as always, God could give us a miracle and just take this from Jonathan.  I find myself stopping in my tracks and asking God to stop time.  I can’t think about months from now because I go to that bad place, but I find myself not wanting anymore tomorrows to come.