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.  

Warning, This Get Graphic (By Jonathan)

I was watching a football game last weekend, if you can call it that.  The game was horrible, worst I have ever seen played in the NFL.  Even the officials looked like rookies out there.  Becky got several laughs out of my blurted tantrums hurled at the TV, which fall on deaf ears.  It came to an epic point on a forward pass that was dropped and ruled a fumble (which to everyone watching was a forward pass, literally everyone).  The refs had a mini conference decided it was a fumble and under review.  In slow motion the ball went forward 4 yards!!!  4 yards!  Not even close to a lateral fumble.  But the refs reviewed it anyway.  At some point during this, and this is an exact quote because Becky wrote it down after laughing, I said “I only have 6 months to live and you’re going to waste it on crappy calls like that?  Oh yeah good idea let’s review it, I have time!”.  It may be morbid a little but please laugh and find the humor.  Because we did, we laughed very hard about it later when Becky told me what I said.

Which leads me to time.  I don’t know if I have 6 months, 2 years, 5 years or more.  I know I am a very methodical calculated person who did very well in probability math class.  I actually had this Brainiac advanced calculus super-hot girl cheat off me that entire semester in college.  Some of you may know her (I married her). 

Here is what I know.  No one has ever survived beyond 5 years with my advanced metastatic sarcoma.  No one, period.  This counts the 1 year I have already had the disease.  At least not documented in any medical journals.  The recommended course of treatment now is chemo (ifos/etop regimen) until that one stops working.  Then try a new chemo, and another all while knowing they will work for a while but the cancer will spread.  The cancer now is smarter than the chemo, it morphs and grows.  The best case scenario here is chemo for years, in and out of the hospital feeling extremely lousy all the time.

Becky has been very careful in her blogs to protect some of my privacy as I fight through chemo.  I noticed yesterday she made a facebook post about my pain with no reference to what was actually happening.  I know there is a fine line between TMI and simply explaining to people what actually people experience while fighting this awful disease.  I’ve decided to tell you exactly what happens to me the week after getting chemo.  Becky has been such an open book that I feel like I’m doing you all a disservice by holding back.  So here goes.

I first start by getting chemo.  I’m nauseous, tired, all the stuff you already know about.  By the time I get home from the hospital the chemo has hit my brain.  I’m constantly dizzy and feel like our house is not even close to level.  Very weird feeling.  Then my white blood cell counts start to drop.  I get mouth sores which quickly spreads down my stomach and into my GI tract.  This has become the most excruciating thing I have ever experienced.  Unfortunately anything I could get in, has to come out.  I have what we thing to be numerous sores, possibly abscessed sores in my intestine.  There is no way to get medication to this area without putting me at a huge risk while having no immune system.  There are also no nerves in your intestine, they all connect out to your rectum, at which point you feel everything going on before the exit point.  The best way I can think to describe this feeling is like passing glass shards that are on fire.  This of course leads to an instant infection because now I have open sores where your body has more bacteria.  So then I get sick, really sick.  And this week I got to experience the absolute kicker.   I’m trying to make this “G” rated… from my bum to my male parts, the skin has begun to peel off.  It reminds me of when the boys had diaper rash.  This is by all means my definition of pure torture.  Unless at the hospital and on IV morphine, the pain is unbearable. 

I have decided this isn’t living.  I’m stuck in a prison cell (no conjugal visits) for 7-14 days a month and when I am home my body is to beat up or so suppressed I can’t even go for donuts with my kids. I have maybe a 7 day window each month that I can get out, play golf, go to the store or kids school, etc.   

But please understand not doing chemo and accepting the inevitable is not quitting.  I am exploring other options and will do those until the docs tell me I can’t.  I am simply choosing quality of life over quantity today.  We all have an expiration date I am just blessed to know mine is a lot sooner, which gives me the power to let go and have fun.  Live life now.  Because I have years of living to squeeze into a short period. 

I haven’t given up hope.  I pray that one of the trials works or at least gives me more time.  I truly think one will but accept the fact in may not.  As a probability person I am at least in the game now.  The cancer had a 100% advantage on me, the trials give me a chance to win as slim as it may be.  For the casino people out there I need a full house at the poker table.  Or a 5 on roulette.  But I get to be at the table now as bad as those odds may be. 

But this also bring a big struggle for me.  15 months ago, I was a normal guy who put on a tie every morning and got to work with his best friend.  We were the number 1 mortgage team in most of the state.  I came home every day, went on a few vacations a year and had a beautiful family, nice home etc.  Besides maybe a few interns at the bank I really didn’t have anyone that looked up to me as an inspiration (and by a few I mean probably none).  I enjoyed my success and just wanted to make my parents proud and raise my boys to be good people. 

Then July 2^nd 2014 happened.  My normal world turned over.  I wasn’t just a hoe-hum Joe any more.  Now I had cancer, my family had cancer.  The battle began.  Leg surgery, 9 months of chemo and I had won the battle.  Our story was spreading like wildfire and our non-profit grew to epic sizes in just months.  I began to hear things like you’re inspiration, a hero.  

One of the most difficult things to process was the compliments from people close to me.  A man I respect as a Godly strong father, blue collar hard worker said I was the toughest person he’s ever met, he works with lineman and electricians daily (truly tough men).  Or a swat trained fire fighter saying I’m a strong mother-f-ing warrior, he works with actual swat officers, police and firefighter (true warriors to me).  I don’t know why but that has always been a little difficult to hear especially from certain people who I thought were those things, but not me.

In my mind I wasn’t any of those I was just a guy who had cancer and wanted to help others.  Never walked down a street thinking I was tough, strong or a warrior.  Certainly no hero. 

I am beginning to accept those compliments and accolades.  Becky and I really have done some amazing work (Becky has, I’ve played a lot of golf).  But we have something to be proud of and be able to look back on.  And I truly did go through some of the worst moments and pains I can imagine to get there.

It’s often even harder to hear now because I’m choosing to stop recommended treatment.  Is that quitting, not fighting, not being tough or a warrior?  I know it isn’t in my heart, but it tears me up sometimes thinking all these people won’t feel the same.  But understand I’m not choosing to quit fighting, I’m just choosing to live.  I’m fighting my cancer by enjoying my minutes more each day (and kind of driving that super-hot Brainiac nuts in the process with all my cockamamie ideas).  But if you take anything away from me or my life remember we all have a certain number of minutes left.  Worry about living each of those minutes, truly living and loving those around you.  You don’t get to know when your minutes are out.

I also need to accept now the real toughness.  Not the Samson tough, tear a castle down, but the toughness to accept Gods power not our own.  Or Gideon’s warrior spirit in trusting God to send 99% of his troops home before battle.  Or Jesus for that matter, having the strength to walk right into Jerusalem knowing his fate just days away.  He could have turned around but had the strength and faith in God that there was something better waiting for him.  No more pain, sickness or death for everyone.  That’s tough!  

All that isn’t me, but it does refocus me to say there is toughness and warrior spirit outside of what our own minds limit us to.   I’m no longer a hoe-hum Joe raising his kids to be good people.  I want them to be more than that.  To be tough, strong warriors like there Dad.  I may not have all the time to do that but they have amazing men and women around them who will.

Still praying for that miracle every day and hoping I have more minutes.  But today I’m choosing to fight cancer by making the most of every minute I’m given.  

True Hope

Last time I wrote a blog Jonathan was developing an infection.  We were fresh out of the hospital and on our way right back in.  I sit down tonight from the hospital room looking out the window.  I’m beginning to enjoy watching the helicopters land on the roof of the hospital. 

After Jonathan’s last round of Chemotherapy, the seizure like chills he was experiencing were in fact an infection entering his blood stream.  Upon awaking that next morning, we went right into the ER.  Jonathan’s blood counts were practically nothing and he had developed a fever that was on the rise.  He had a crazy high pulse rate and was beginning to experience chest pain.  That ended up being a very long week.  Jonathan felt absolutely horrible.  At one point during that week we had a little scare and I watched a doctor stand over my husband and ask him, “If your heart stops, would you like us to resuscitate you?”  I breathed a breath of fresh air as he tells him “yes”.  However he followed that up with, “ask me again in 3 months though!”  He was in horrible pain and was diagnosed with Klebsiella.  (A Bacterial infection)  They began treating him right away and after platelet infusions, red blood cell infusions, tons of antibiotics, etc. He began to feel better.

During that week, Jonathan and I had some very real conversations.  We are currently living the life we will have while fighting cancer.  In the hospital, out of the hospital, back in the hospital, infection, excruciating pain, fear and oh yeah, we miss our kids like hell.  We are exhausted!  What kind of life is this?  And lets just be real, not negative, but real.  So if we do all of this, what are the chances?  At this point we know there has never been someone this far progressed with inoperable Osteosarcoma, live.  What is this doing to our family?  What is this doing to our children, during their most influential years?  My husband isn’t a quitter, but what he does do, is consider everything.  Every option.  Every outcome.  Every person.  I think for him to start considering other choices, he needed to be informed.  So one day during the doctor’s rounds, he asked the big question.  How long would he have if he stopped chemotherapy treatment? 

He enjoyed his week at home and made the most of every minute.  He helped me here and there with the prep for the auction.  He worked on Lego projects, took the kids to do a few fun things and then of course in seven days played 4 rounds of golf.  He frequently would just fall asleep on the couch.  I don’t know how he does it… He just can’t miss out on any moment because he is tired I guess.

Besides the conversation Jonathan and I had with the oncologist, Jax came in at a close second for the hardest conversation I’ve ever had to have.  As we drive to school I hear from the back seat “Mommy, how do guns kill you?”  So I thought I would be very factual and scientific with my answer.  “Well Jax, you know how a gun shoots out a bullet?  When the bullet hits a person it is going so fast that it goes through your skin and inside your body where you can’t see.  We have some very important things inside our body that helps keep us alive.  For example, you know when Dr. Raj listen to daddy’s heart?”  Jax interested says “yeah, he listens to daddy’s heart beat.”  “Yes Jax, If your heart is hit with a bullet it can’t beat.  And if it can’t beat it can’t pump blood all around our body.  We need blood to stay alive.  Dr. Raj also listens to daddy’s lungs.  Our lungs help us breath.  If a bullet hurts our lungs, you can’t breathe.  So that is how a gun can kill you.”  Jax sits there for a minute looking out the window as we sit at the first red light.  As we approach the next red light I hear him say “Mommy, is daddy’s cancer trying to hurt the insides of his body?”  My heart immediately dropped.  I was wondering when he was going to ask me this… I am not ready, but I answered his question.  “Yes Jax, Daddy’s bad guys are trying to hurt the inside of daddy’s body.”  He quickly fired back, “are they trying to kill daddy?”  I sort of began to cry as we pulled into the parking lot at school.  I put the car in part and turned around to look at him as I answered his question.  “Yes Jax, the bad guys inside daddy are trying to kill him.”  I think he was getting sad already and I hope I didn’t make this harder for him by crying myself.  So as he began to cry he asked me, “Is daddy going to die?”  I told him through my tears that I didn’t know.  By this time he was crying pretty hard and saying “I don’t want daddy to die!”  So I reached back and grabbed his hand and I grabbed Jude’s hand as Jude just sat there completely unsure of how he was feeling I think.  I told them “I don’t want daddy to die either.  But I know something for sure.  Daddy isn’t going to die today!  So we need to make sure daddy know we love him and give him as many snuggles as we can.”  Then Jax remembered something from the book I wrote him.  Once again he reminded us we need to be happy.  Those bad guys hate that.  So we gathered ourselves and walked into school holding hands the entire way.  Then I cried the entire drive home.  I don’t know if a mother could ever be ready to answer that question… But I know I wasn’t ready! 

Later that day Jonathan got a call from the people running the trial out of Duke that we had applied for.  It is also an immune therapy drug using T-Cells but instead of using a virus it is using a PD1 blocker.  This trial is in a stage 2 and is being used for Sarcoma cancers.  It isn’t specific to osteosarcoma, but it is showing some promise.  So we are planning on starting this trial drug after Jonathan has a set of scans to show us if the chemo is even doing anything at all.  We are also still waiting to hear back from Houston on that trial as well.  We know they have Jonathan’s pathology slides and are working on the testing. 

Last Saturday was our big day.  Jonathan hosted his first golf tournament, and I jumped into the deep end and attempted to throw a dinner and auction.  We set out to raise $70,000 to make some updates to the oncology floor at the hospital.  We were so taken back at the generosity of family, friends and community members that were so supportive of our cause.  Jonathan announced one of our goals for next year.  We are excited because we have already begun to help change Washington Law so that we can become a charitable pharmacy and help people have access to medications they may not have due to no insurance or medications insurance maybe wouldn’t cover.  This project is actually already underway…  Anyway, we are excited to say we exceeded our goal and think our numbers are going to come in over $100,000 raised. 

This Monday Jonathan checked back into the hospital to once again start chemo.  I think he may have actually been looking forward to getting some rest!  We worked on accounting stuff for Cancer Can’t, watched some movies, took a few walks and had a few naps.  It only takes a couple of days to get stir crazy though.  We are ready to be back home. 

Jonathan and I both really enjoyed listening to Sean speak last Saturday.  He is actually a really cool guy.  His goal, spread hope!  He has this quote (I’m just making up the numbers because I can’t remember…but you get the concept) “The human body will last 30 days without food.  It will last 6 days without water, but it will only last 30 seconds without hope.  Because without hope we have nothing.”  I think for all people hope is essential to life.  We have to know that things can get better.  I could easily see how anyone in our position could begin to feel hopeless.  The answer to Jonathan’s question was this: If he stops all treatment he may have 6-8 months.  2-3 of which would have some quality of life.  We hope that a T Cell Trial works for him and he can be a first for a cure.  But mostly the doctor is hoping it will give him 2-3 years without chemo side effects.  He can keep trying chemo and maybe make it 2 years doing that. 

I find myself listening to a sermon on hope that was done a few weeks ago.  I seem to listen to it over and over.  It is my reminder that the hope for Jonathan and I may be for God to give us a miracle.  I mean we’ve given him one heck of a platform… my last blog had 5,000 views.  (Like he needs a platform)  And I will never stop praying for that miracle.  But maybe hope isn’t just that miracle, But our true hope is not of this world.  1 Peter 1:6-9 ⁶ In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. ⁷ These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. ⁸ Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, ⁹ for you are receiving the end result of your faith, the salvation of your souls.

This scripture is such a huge reminder of what true hope is.  Although we are sad a lot, we are also able to find joy in a circumstance I would never choose.  It is so interesting because in this sermon the pastor quoted that quote that I never understood.  ”It was the best of times, and it was the worst of times.”  I never knew how that was possible until now.  The other day as I was making breakfast, Jonathan grabbed me in the kitchen and was having me dance with him as he sang to me.  Jude yells over from the table “Dad, are you trying to marry mom?”  So I was telling a friend about how I feel so loved by him.  Even though we are sad, we are also so happy.  And she reminded me that there are people that may live their entire life, married, single or otherwise, and although our time might be short.  Most will never know a love like ours.  So even if I don’t get 50 years with him, I will always have that!