Things can change so fast!

I know I just posted a blog, but I’m getting lots of texts and questions about what is going on as word is spreading that things are not going well.  So I thought I would fill you all in.  This is the easiest way for me so my phone isn’t blowing up and I’m not spending hours on the phone.

So as I mentioned in my last blog, Jonathan is loosing feeling in his left leg all the way down to his foot.  At first it was when he was sitting in different positions, now it is progressing to where his foot is hurting or getting the pins and needles feeling all the time.  Shocker, I started researching!  So on Monday night as we were lying in bed watching TV, I decided to take his femoral pulse.  (That’s the most action Jon gets anymore…)  It was super easy to find it on the right groin.  The left groin where the tumor is, I could feel nothing but tumor.  So I started to get concerned that he was losing blood flow to his limb and that artery may be getting blocked by the tumor.  I called the doctor first thing Tuesday morning to get him scheduled for a scan before he went in for surgery to get the pain pump in.  I was unsuccessful!  They ended up getting the scan done after his surgery first thing on Wednesday morning. 

I went right down to the imaging place and got the CD of images.  Later that day we met with a doctor friend at the house to look at the images together.  Jonathan has an additional 6 or 7 spots on his lungs that are small, but new.  His hip, where he is getting most of the pain, has changed significantly.  His tumor has now wrapped around the hip bone and goes from the outside of his left hip all the way to past the center of his pelvis.  It is starting to work up to the lower back and is now half way down his left femur.  The tumor has begun pushing on his large intestine as well as shifting his bladder.  As you can imagine this is causing problems.  I called Dr Howlett to get his opinion of the scan.  Fortunately I was wrong and the tumor is not yet crushing his artery.  If that was the case we would have to choose to amputate his leg, or let him die from a blood clot or gang green.  So for now that isn’t happening.  It is however crushing his sciatic nerve.  So he felt at this time it is still safe to not surgically do anything.

I thought I would show a few images of the CT of the tumor in his hip.  I made some notes on the images to explain.  As you can see they didn’t even get the entire tumor in the scan…

Here are questions we are getting:

Can you cut out a portion of the tumor that is causing problems?  It is not recommended.  It is called seeding the tumor.  Once you cut into the tumor the cancer cells are disrupted and spread everywhere.  Often times the incision won’t heal and becomes cancerous.  This obviously causes a ton of its own problems.  Not to mention the metastatic disease can explode and your time is shortened.

Chemo? Jonathan doesn’t want to do chemo!  And it will disqualify us from the trial in Houston.

Radiation?  We are looking into palliative radiation options.  We are also trying to figure out if it will disqualify us from the Houston trial as well.  BUT radiation will hopefully provide temporary pain relief although it is not a curative method for Jonathan’s type of cancer.  So we are meeting with a radiology Oncologist tomorrow to prepare to begin treatment.  It is a process to get radiation with body casting, placement etc.  So we will start the process in hopes that coming home from Houston we will have most of the hoops jumped already. 

The Pain Pump?  Well we went into the doctor early this morning as Jonathan did not sleep more than 2 hours last night.  Lying down is so painful for him.  So about every 20 minutes he was getting out of bed just to hold onto the wall and stand.  Now imagine you just had surgery on your abdomen and you can’t lay down.  Yeah… that is what we are dealing with here.  So Dr. Jamison increased his morphine pump by 70%.  She said it is making the hair on her neck stand up but she could see the amount of pain he was in. 

Houston?  We spoke with Dr. Wang yesterday.  They will be ready for Jonathan on March 14^th.  He has to have a 2 week wash out of his immunotherapy drugs.  So we are getting those today, and then will be mailing Jonathan’s scans to Texas.  Once they determine it is still safe for Jonathan to do the trial, we will book our flight.  Jonathan, I and the boys will fly down.  My dad will be taking the truck 4 days before we leave and he will drive down and meet us.  I’m working on finding housing close to the hospital. 

Jonathan and I feel it is important for us to do everything we can to get to Houston.  He feel it is our only shot at actually saving his life at this point.  We do also know that they have lost patients while on this trial.  So as he is getting worse for wear, we assume our risk is rising every day.  So this is our long shot…

I was talking to Jonathan’s sister last night as we were talking about where we are at.  She decided to establish some rules for us.  I’m having a hard time telling people no and laying some ground rules.  I just know everyone loves Jonathan and wants to see him, however as I wrote in my last blog, I watch him fake it.  He also doesn’t tell people no or let them see how he is really doing.  So as we prepare to leave in 2 weeks and know full well I may only be bringing 2 little boys home with me.  We would love to see you, but I really appreciate Kristine protecting us by establishing a plan for how this need to go.  Here is what Kristine would like me to have everyone know. 

-We are no longer going to be able to go out.  Jonathan is just not well enough for that.
-No more overnight house guests… not even family.  This will allow us to put our kids to bed and have time alone.  Jonathan also won’t feel like he needs to wake up and have coffee/breakfast with guests.
-Visitors need to limit their stays to an hour and a half. 
-Everyone needs to leave by 7pm. 

To add insult to injury as we were leaving the doctor today the nurse was taking more labs because his original labs showed an enzyme called alkaline phosphatase.  This is an enzyme that can indicate a few possible things, but as I read about each scenario I think that it is indicating bone metastasis.  It ultimately is something that happens in late stage cancer patients and of course is extremely painful.  If you have the desire, google Bone Metastasis Bisphosphonates.  You’ll have a wonderfully terrifying read.  We are hoping to have more lab results back on this tomorrow.

I don’t know what else to say except we need prayers.  I want to say thank you to our friends that have showed up to help the kids have a fun day as we try to protect them from our tears.  Thank you to those of you who are going to pick up the pieces of Cancer Can’t so our hard work and desire to make a difference will not be in vein.  Pray for us that we may have the insight on how you explain this to a 4 and 5 year old.  Pray for Jonathan and I as we begin to talk about scenarios, his wishes and that I will have the courage to do what he needs me to do.  

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.