3 Month Mark

It’s almost been 3 months since Jonathan passed away.  I’ve been having a hard time sleeping for some reason the last few days, so I thought I would write a blog update.  People always ask how things are going so hopefully this will give some insight into what this is like.

I don’t write many blog updates anymore because I feel like there isn’t much to say that you all don’t already know.  I’m Sad!  That pretty much sums it up.  My aunt Shannon has been encouraging me to continue writing as that has been my therapy through these last 2 years.  My friend gave me a journal, so I have been hand writing to the boys about their dad.  I started at the day I first remember meeting him.  What he was like way back then, what he smelled like, his personality, his green car with the squeaky door.  Literally everything I can remember.  I think it is helping me.  Some nights I fall asleep laughing, and some nights I cry.  Some nights I don’t write anything at all. 

Truthfully the boys are really doing very well.  They don’t get sad much anymore.  They talk about daddy every day though.  How he made better pancakes than me, how he would have thought something was funny, how he would brush their teeth, or that he would let them get a slushy and I never do.  We went golfing this week and they had to show me the secret hole dad showed them at Manito.  (I know, it’s almost July and it’s the first time I’ve taken them golfing.  Jonathan would be ashamed of me!)  The boys told me dad always let them have raspberry tea when they golfed, so we got some tea and they had a wonderful time.  Jax is getting stronger and Jude is really picking it up as well.  I feel like Jax is a bit sensitive at times, but he has always been that kid.  So I don’t think it is because of Jonathan anymore.  They are adjusting really well and overall are very happy kids excited to ride bikes and swim.

This last month has gotten hard for me.  I think I’m making progress and trying to do things to push myself forward.  I took my wedding ring off at Christmas because Jonathan bought me a new ring that isn’t a wedding ring but something he thought I could wear forever.  I had been wearing it as a wedding ring, but I went to have it resized to move to my other hand.  That was where he intended it to be.  He wanted me to be ok, and move forward.  He wanted me to be happy.  So I’m really trying.  I packed my first box this month of his golf hats and clothes and moved them to storage for the boys.  As I went through all his hats (he bought a hat at each new course he would play) I thought how cool it would be for the boys to go through those later in life and try to go play some of those courses their dad played. 

I went to a grief seminar this month with my friend Harmony who is just a couple month ahead of me on this not so fun path.  We weren’t very impressed with the seminar, but we had a good time together afterward at dinner.  I guess I just already knew that I’m trying to keep myself super busy so I don’t have to think about things.  The scale has told me I’m eating as a coping mechanism.  Yeah so how do I fix it?  Oh and I don’t think about dying so I could be with Jonathan, I’m not walking the slippery slope of suicide talk.  (That was like 45 minutes of the seminar… it is normal but a slippery slope LOL)  Since I didn’t get any great advice on how to fix me, I decided I guess I just have to do it myself.  I’ve tried to check out a little bit from Cancer Can’t at night time to just be, and I’ve lost 5 pounds.  Only 10 more to go… then I’ll be back to where I started 2 years ago.

Dad has moved back out and went home.  So I’ve been alone for about a month now with just the boys.  I think he has discovered he enjoys retirement and sitting down to a cup of coffee that hasn’t been microwaved 4 times is much more enjoyable.  When he is here, he is totally checked in and the kids know it.  Papa is on duty and they take full advantage.  So we miss papa, but it is probably good that we start doing this alone.  Or at least that is what we are being told… I would be fine with dad living here.  Judge me all you want!

Now that it’s just me and the boys, I’m realizing how lonely I actually am.  The days are usually ok because I keep myself busy, but nights are really hard.  My friends go home to their husbands and kids, and hanging out until 10 isn’t super appealing when you have to work the next day and they want to be with your own family.  I get it.  When Jonathan and I did marriage counseling, we read this book called the 5 love languages by Gary Chapman.  (Highly recommend)  In my loneliness I have been thinking about this concept.  Maybe I’m having a pity party here, but my love language happens to be physical touch.  Could there be a worse love language to have when you loose your spouse?  I love getting flowers (gifts), and I love spending time with friends (quality time), I appreciate kinds words (words of affirmation), and people have done so many things for me (acts of service).  But what I really want is a real hug.  Not like the hello/goodbye hug that I get every day, but to be held.  I miss just snuggling up on the couch to watch tv, or even when he would smack my butt in the kitchen while I’m cooking.  I’m pretty sure I could talk one of my friends into smacking my butt now and again, but I just don’t think it will be the same gesture.  It’s kind of weird to think about anyone other than your companion fulfilling the love language of physical touch.  I mean I can think of 2 times since Jonathan died that I had someone show me love in this way.  I snuggled with my dad on the couch one night while watching tv, and my cousin Ryan put his arm around me on a tee box while golfing and just rubbed my arm for a few moments.  So not that any wife wouldn’t miss the touch of their spouse, but maybe the need is just greater when that is your love language.  When it is anyone other than your companion, the gesture could seem weird.  (So no need for anyone to attempt to smack me on the butt)

The other night Jude put on Jonathan’s deodorant after his bath.  It wasn’t just a little bit under his pits, I watched him do his neck, and pull his waist band out and put it just below is belly button. (Not sure where he saw this, I don’t think Jonathan put deodorant there… but maybe if he was trying to get lucky or something)  Anyway, when I went to check on Jude before going to sleep when I gave him a kiss he smelled like Jonathan.  So I picked him up and brought him to bed with me.  I snuggled him until I fell asleep, mostly because I just wanted to smell him and feel like I was snuggling Jonathan. 

Many of you may not know that Jonathan wanted to donate his body so that they could study his cancer.  He felt very strongly about his body being an empty vessel and that it wasn’t him anymore.  So we didn’t bury him, or put him in a wall somewhere.  BUT when you donate your body, when they are done, they send you cremated remains.  I got those in the mail last week.  Yep, they mailed him to me!  My dad had no idea what he was signing for when he was visiting that day.  He set Jonathan on the counter and Jude colored all over the box.  Haha  Life is right back to normal for him I guess.  So now I need to plan a few trips to scatter ashes I guess.  The boys keep asking about Maui!  Sounds like a good plan to me.

Overall though I think I’m doing ok.  I think being lonely is just what I’m going to have to go through.  I still laugh everyday and try to live how Jon would want me to.  He showed Christ in the way he lived by always being so positive, and caring of others while in the midst of fighting a battle he never deserved.  I’m trying to honor both Jon and Christ by being ok, moving forward, do what he told me to do, laugh, and see the good and beautiful things around me.  I know many of you are still praying for me and the boys.  We appreciate that very much.

The Blog I've been avoiding...

I’ve been avoiding writing since Jonathan died.  I think about sitting down to write a blog update all the time.  I seem to always find something else to do instead though.  During Jonathan’s treatment writing often was therapeutic for me but now what do I have to write about?  Everyone already knows this part is hard.  I almost don’t know what to say.  I think I also haven’t written because I’m afraid to share what I was writing about 6 weeks ago.  As Jonathan was passing, I sat down each night and briefly wrote what happened each day.  I wanted to remember so I could tell the boys as they grew about when daddy went to heaven.  But as I read through what I wrote and think of what the last 4 days of his life were, it is very hard to read.  His last few days were mostly horrible.  So I want to warn anyone reading this, that what you are about to read is awful.  I’ve been around death a little, and heard people talk about death of their loved one.  This wasn’t peaceful and was nothing like how Jonathan and I wanted this to go.  I have a hard time thinking about it.  I’ve debated on even sharing this, but one thing I have done through this entire journey is be open.  Real.  Raw. 

Friday Aril 1^st

Tonight I sit on the couch, in my makeshift bed, wide awake as I watch Jonathan.  I close my eyes for a minute but I can’t sleep because I can hear him gasping for air.  He is asleep.  He says he is comfortable. He tells me he isn’t in pain.  But as I watch him breath I can’t imagine how he could be comfortable.  He takes a large quick breath in and then pushes it out with such force.  This is followed by a motion where his shoulders raise and his chest presses back as you then hear a high pitch whistle sound.  I wonder how long can this go on?  I got up on the hospital bed with him that hospice brought.  I just held him for a while.  I began to cry and I can tell that upsets him and his breathing becomes even more labored as he begins to cry.  I know he gets scared of the feeling when he can’t breathe, so I try to gather myself and keep him calm.  He whispers to me “I’m Sorry you have to go through this.”  I told him I would do it all over again.  He is worth it and I will miss him beyond what he could ever imagine.  He tells me he feels sort of afraid.  He doesn’t know what this is going to feel like to die.  Then he jokes, “Well you know, no one has really ever lived to tell about it.”  After he falls back to sleep I make my way back to the couch where I sit now typing. 

I can hear Jax in the next room coughing in his sleep.  I begin thinking about our incredibly sweet boy.  This morning I told the boys as they had breakfast that I think it might be time to say goodbye to daddy.  I would have grammy come get them and they could play there until daddy goes to heaven.  Jude was totally content with that plan.  Jax on the other hand, looks at me and says “I don’t want to do that.”  I told him that I don’t know what is going to happen and I don’t want him to be afraid or see anything that might make him afraid.  He says “Mom, if I feel afraid I can go hide in my room until you tell me it is ok to come out.”  I told him that I would talk to daddy about what we are going to do but that I want him to know I hear what he is telling me he wants, but that what we decide to do is what we think is best for him.  Later that morning I began to tell Jonathan what Jax said.  I think he heard me because he came out of his room from getting dressed and walked right up to Jonathan’s bed.  He looked at his dad and says “Daddy, I want to be here to help you.  I want to be here when you die and go to your new body.  If I feel scared, I will go into my room until mom says its ok.  Can I please stay with you?”  Jonathan and Jax both began to cry and Jon gave Jax a big hug.  He told him he was so proud of him and he is so brave and kind to want to help.  He told Jax to let us talk about it and we would let him know what we decide.  I’m worried about what he may see, but I’m also worried he will hold anger at me for not letting him stay with his dad.  So I talked to the therapists and we told Jax he could stay.  We are going to take this minute by minute.  We will try to explain what he can expect the best we can.  He has been helpful today.  He sat and read books to Jonathan.  He did legos for hours on the floor by his bed.  He made daddy a note and put a picture on it for him.  He helped turn on and off the nebulizer and the oxygen when daddy needed extra breathing treatments.  Until Jonathan told him he had to go play outside for an hour or so, Jax never left his side.  He truly loves his daddy, and not so surprising that he has a very similar heart as his daddy. 

Saturday April 2^nd

Today was difficult.  Jonathan is becoming agitated and not totally aware of everything.  It is weird because at times he doesn’t seem to understand certain things. (Like why he can’t shower because he can barely stand so he gets mad and throws a towel at me saying a swear word… This was the first time in our marriage he swore at me!)  Other times he seems totally normal and coherent.  My dad followed me to my room to comfort me after one of Jonathan’s outbursts as he knew that bothered me.  He wasn’t acting like my Jonathan.  He never raised his voice at me and NEVER would swear at me.  My dad reminded me that this isn’t Jonathan.  This is the medications and warned me it may get worse.  Luckily that didn’t get worse today.  He is completely aware of awkward moments and tries to crack a joke as usual.  Today the nurses decided they needed to give him an enema because he hadn’t went to the bathroom for a few days.  He can’t walk very well and refuses to go on the portable toilet.  My dad told him he would help Jon get to the bathroom because Jon didn’t want me around to see this.  So as my dad held him on the toilet Jonathan made sure to tell him he ordered a 2 for 1 special.  Next it was my dad’s turn.  My dad enjoyed the joke and has always loved Jonathan’s sense of humor.  I’m so grateful to have my dad today.  

Jonathan was so uncomfortable and I feel like I’m starting to give him so much medication.  The nurses are trying so hard to help me get him comfortable.  Jonathan seems to be metabolizing the medications far faster than the typical patient.  He is not resting peacefully, and doses are maybe making it half the time they should.  I don’t understand this suffering and hope Jesus will take him soon.  But tonight as I write, I can tell you why Jesus hasn’t taken him yet!

Jonathan feels like tonight is the night.  As in the night he gets to meet Jesus.  He told me he wanted to tell the boys goodbye.  So he had Jax crawl up on the bed and Jonathan told him so many special things.  They both cried and embraced for a while.   Then it was Jude’s turn.  He crawled up on the bed and once again Jonathan told Jude everything he needed to say.  They cried and held each other for a while.  I then noticed Jax had went to his room so I went to make sure he was ok.  As I walked in, he was walking to me with a book.  (This is a salvation book I bought a few years back that Jon and I have each read a handful of times to him.  There is a prayer at the back of the book where you accept Jesus as your personal savior.  We’ve told the boys when they are ready to say this prayer that they can tell us.)  Jax looked up at me and says “I’m ready to say this prayer mommy, can I say this prayer with you and daddy tonight?”  So tonight Jax and I sat at the foot of Jonathan’s death bed, and Jax accepted Jesus Christ as his personal savior.  He just gave Jonathan the best gift you could ever give a parent.  It was incredible.  Then as Jonathan hugged Jax for the last time, like every night before, he whispered into his year, “I’ll see you first buddy.”  Tonight it brought an entirely new meaning.  He will not see him first in the morning but will be waiting for Jax in heaven.  As I put Jax to bed, he whispered in my ear that he was ready to go to grandma’s house and he didn’t want to stay anymore.  I told him they could leave first thing in the morning.  I hope Jonathan has a better night and goes quickly.  My dad is going to stay up with me as he is noticing that this is beginning to get too hard for me to do alone and I’m exhausted.

Sunday April 3^rd

Jonathan is still with us.  Last night was awful!  He can’t get comfortable, I’m giving him as much medication as I can and he isn’t sleeping.  He has been calling out to God to take him, he is ready to go.  My dad and I tried to take shifts last night but he always is calling out for me.  He just wants me.  It is so sweet, but I’m also so tired.  I think I was able to sleep from 2 am to 3:30.  My dad tried to let me sleep at like 5 to 6 but Jonathan started to get really agitated again.  I finally just had to call the nurses to help us.  This is just too much.  I also called Jonathan’s Mom and told her to pack a bag to come over as well.  This is becoming a two person job and we need to be able to have a break.  I think a team of 3 is now a minimum requirement.  The nurses arrived first thing in the morning and are beginning to give him enough meds to tranquilize a horse.  It is working for a little while but the nurses are shocked at how fast he is metabolizing these meds as well. 

I am grateful for a few moments of lucidity that he had today.  Again today we had a few awkward moments that Jonathan quickly lightened with his humor.  In a state of agitation he must have ripped off his condom Catheter he was wearing.  So he ended up peeing the bed when he thought it was still on.  So my dad helped me get him up and cleaned off.  I got the sheets changed, and so as I was in the bathroom cleaning the urine bag, Jonathan was laying out on the bed totally naked.  I hear him yell at me “Hey hun, don’t hurry or anything, it isn’t like I’m laying here with my dick out of anything!”  So I hurried along and got everything ready to put on a new condom cath.  As I was putting this condom thing on him I look up at my dad to say, “Well this is awkward… never put a condom on a guy in front of my dad.”  Jonathan quickly took the opportunity to pipe in.  “Well Randy, you know if my pecker wasn’t so big I wouldn’t have shot the first one off in the first place!”  He still has his sense of humor just minus a filter apparently!  Later that day He held me and kissed me over and over as we both had tears pouring down our faces.  He was holding my face to his so he could feel close to me and I just feel like he was saying goodbye forever.  He never said it, but I could feel it.  He told me how much he loved me.  This normally would feel odd to me kissing so much with people watching as my dad and his mom sat on the couch next to the bed and saw the entire thing.  He even turned and apologized to all of us in the room for taking so long to die.  He just didn’t know how to do it and he was so sorry to put us through this. (I know right?)  So Jonathan and I together decided to stop giving him water and food.  He needed sips of water to swallow pills but I told him if he asked for food or water beyond that I would not let him have it. 

(My last photo with Jonathan)

Most of the day I would try to lay beside him in bed.  My ear is beginning to really really hurt from laying and crying.  I think I’ve gotten fluid in my ear.  My dad has been an absolute angel to Jonathan through this.  These Hospice nurses have been awesome and Jonathan’s mother was just what I needed.  I knew that if I left the room for a moment he was being loved and taken care of with the most compassion.  The support system I had in place was perfect.  Jonathan kept asking today if the boys knew he was going.  He often asked if Scott knew what was happening.  When his mom wasn’t there he would ask if she knew he was going to die.  If I wasn’t there, he wanted me to be there constantly.  The nurses from hospice stayed all day trying to get his medication regime down.  In fact they are scheduled to stay until 1 a.m. tonight.  Amy the nurse told me I needed to go sleep.  So I’m going to hit the pillow for as long as I can.  I pray his suffering will end soon.  But for now he is actually sleeping so I will try to do the same. 

Monday April 4^th

Jonathan went to meet Jesus today.  I’m incredibly sad for me, but so glad he is no longer suffering.  These last few days have been awful.  I spent most of the morning laying with Jonathan.  He sleeps for an hour or so before he wakes and is moaning in pain.  He can’t see really, he is unable to swallow now and we are having such a hard time with meds.  He keeps choking and this is almost unbearable to watch.  At times all 3 of us are required to help him.  It has been nice having 3 of us as well as a nurse.  We often need a break.  After pastor Joe came to visit I went down for a quick lunch.  When I came back up Jonathan’s breathing began to change.  He was asleep and I think his heart must have finally began to give out.  I held his left hand as his mom held his right.  We cried as he took his last breath.  I took the ring off his finger and put it on my hand.  As he started to change color and his hand began to get colder I knew this was not what Jonathan wanted me to see.  He had left his vessel and was no longer there.  So I went down stairs and walked into the back yard.  It had been raining all morning and was windy and cold.  But as I walked into the back yard the wind stopped.  I had my head down, my eyes closed and then I felt something warm on my face.  As I opened my eyes, the clouds had parted and the sun was coming through the tall pine trees behind our house.  I just sat there for a minute holding my face where I could feel the warm sun touching me.  It was exactly what I needed.  It was my message.  He was with Christ now, and he was ok.  He was perfect, and I finally experienced peace just for a moment.  Then the wind picked up, the sun went behind the trees and suddenly I was cold again.  I turned around and my dad was waiting for me at back door.  We hugged and cried for a bit before I asked him what I was supposed to do now.  We decided to sit down and just take a second.  I needed to catch my breath and figure out what to do.  We began discussing how the boys should be told.  I wanted them to come home, I needed them now. 

My dad called my mom to tell her how we wanted to tell the boys.  She and my older sister and brother told the boys shortly after we called.  They decided they needed to tell dad they loved him before they came home.  So uncle randy got them some balloons to send up.  Then they were on their way home to me.

Scott and Heidi came over and helped clean the house up after they took Jonathan’s body.  They wanted the house to be back to normal when the boys got home.  Tonight the boys are on each side of me in bed.  I couldn’t be alone tonight. 

Today May 16, 2016

I will continue to blog and let you know how we are doing now.  I've been feeling guilty for not writing.  I’m trying to be normal but lately it seems so forced.  Nothing feels good.  There are so many things every day that make me think of Jonathan and why I miss him.  I think I'm about 4 pounds away from the weight I was when I gave birth to Jax.  I seem to be eating as a coping mechanism...  So I'm now trying to get a grip on that!  I hate that I don't feel normal.  Things I used to enjoy I just don't.  (Unless it is a cookie apparently)  The boys are doing ok.  We talk about daddy all the time.  They miss him.  Often Jude will ask if Jesus will let daddy come back for just one more day.  Jax says he wants to go to heaven so he can be with daddy.  He is much more sensitive and isn't doing as well.  But all things considering we are putting one foot in front of the other.  

I do want to share a couple of things though.  For those of you that missed Jonathan’s memorial, I’ve uploaded it to youtube for you to watch if you want.  It was a beautiful service.  Here is the link:  https://www.youtube.com/watch?v=JLWcbZRU8-g&feature=em-share_video_user

Also, we are trying to make sure we have everyone’s emails for Cancer Can’t so we can make sure you are getting updates on everything we are doing now.  Things are getting busy!  This is a great way to keep me busy and possibly avoid my problems.  But the entire reason this program started was so Jonathan could feel good by helping others.  I’m going to follow his example.  So if you aren’t getting emails from Cancer Can’t, Please sign up here:  https://www.facebook.com/cancercant.info/app/100265896690345/  

The Start of a new Beginning

I know most of you are expecting to open the blog and read about our family departing on our maiden voyage to Texas.  Unfortunately, that is not the New Beginning I’m about to share with you.

After I published my last blog, Jonathan took a drastic turn for the worse.  By Sunday evening he had begun to start coughing up fluid.  Pink frothy fluid.  No he didn’t have pink juice or raspberries.  The pink is an indication that there is blood mixing with fluid in his lungs.  We had his CT scheduled for Monday that the Texas Dr. needed.  However we actually urgently needed as well.  The CT showed that Jonathan’s left lung was filling significantly with fluid.  We overnight mailed the images to Texas and scheduled Jonathan to have his lung drained the next day.  On Tuesday they drained 1.5 liters of fluid from Jonathan’s left lung.  On Wednesday we met with our oncologist to talk about Texas and what he thinks is happening at this point.  Unfortunately, our conversation wasn’t a positive one, however it was what we were somewhat expecting. 

The color of the fluid indicates that the fluid is coming from the cancer.  The bloodier in color it is, the more progressed the disease is.  As they drain the fluid, the cancer will most likely continue to grow and just produce more fluid faster.  He felt in Jonathan’s current state, it would be unsafe to travel across the country.  We pushed him to tell us how long he thought Jonathan has.  His answer… a few weeks.  His advice was to make Jonathan comfortable and that the risks of him traveling vs. the gain was not worth it.  After leaving that appointment we called the Dr. in Texas to get another opinion.  She said that she isn’t going to tell us we can’t come.  However she recommends that we also just make Jonathan comfortable.  The consideration of Jonathan Dying in Texas, or possibly experiencing something horrible while on the road in the middle of Wyoming didn’t seem like a good idea.  She said the tumor in his hip has become absolutely massive.  She felt that the treatment would not even be effective in a tumor that size now anyway.  But If the fluid does not return and Jonathan becomes more stable, she said to come down.  She will keep his T-Cells frozen until she is told otherwise. 

So we did not load the RV on Thursday and we did not leave for Houston this morning.  I heard Jonathan tell my dad that it looks like this is going to be the beginning of the end.  But we both know that for him it is really the start to a new beginning, not an end.  Jonathan has had the most amazing 6 months that anyone could really ever have.  When we decided quality of life over chemo=quantity of life, we knew that most likely this day would come.  We went to New York and had the time of our life.  Field seats to the Seahawks game.  Jonathan had a golfers dream trip to Pebble Beach and Cypress.  He knocked off 2 more bucket list items in Hawaii with our boys.  Most people will live through their 70’s and never experience what we did in the last 6 months.  We have no regrets!  We are not questioning the decisions we made.  We are at peace.  Really the boys and I get the short end of the straw.  Jonathan got to have a great 6 months and then he gets to go hang with Jesus in an even better paradise. 

We are still very sad and have major worries and concerns.  How is this going to go?  I do not want Jonathan to be in pain.  How much of this do we expose our children to?  How in the world do I tell them that their daddy has died?  I’m going be alone and without my best friend.  There are going to be about a million times that these boys are really just going to need their dad.  How could that not absolutely break your heart.  But we will be ok.

Jonathan had another X-Ray today.  The fluid is already building again.  He will be getting a permanent chest tube on Monday we think.  This will allow me to drain fluid off his lungs daily to help him stay comfortable.  We will most likely be entering into hospice care by the middle to end of next week after we get that chest tube done.  At this time, we are ok with some quick scheduled visit if you feel like you were close with Jonathan and want to come say hi.  We just have one request, your visit needs to be filled with laughter, not tears.  As he progresses, I think I will be asking for no guests and will want to soak up the seconds we have left just the two of us.  I think Nikki will be posting some more food sign ups again soon if you feel like that would be a way to help.  Thank you for praying for our family in this difficult time. 

To add some laughter to this very difficult blog, I thought I would share a story.  Yesterday our cousin Ryan and good friend Tyler drove over from the Tri-Cities to visit.  The guys were teasing Jonathan about the massive size of the tumor and that he was developing a figure comparative to Beyonce.  The conversation developed to a point where Jonathan was actually up out of bed attempting to twerk.  The laughter was exactly what we needed!

The angry stage of greif

I wanted to send out an update before we leave for Texas at the end of this week.  We have been very busy the last couple weeks as Jonathan has been degrading rather quickly. 

After his surgery, Jonathan was really struggling with pain.  We weren’t sleeping much and he was in a constant very high level of pain.  Like really high.  I felt like I did after just having a baby.  You know that first night when you are exhausted but you just lay there and watch the baby sleep because you are afraid you won’t hear them if they need you.  Maybe even a little afraid they would just stop breathing.  Even if Jonathan did fall asleep I don’t know that I was really falling asleep.  Eventually after a few nights like this, we went to the pain clinic again, both in tears, pleading for help.  They took all the morphine out of the pump and replaced it with a bupivacaine and morphine mixture.  Bupivacaine is what they use in an epidural for women when having babies.  We were learning that morphine does absolutely nothing for nerve pain, so we needed something different.  So we have been going into the doctor almost every other day to try to get the dose figured out for pain.  I think we are very close.  Finally, last week Jonathan was sleeping pretty well and only waking up a couple times a night. 

We talked to multiple doctors and some friends that have been through this and decided to try to do some radiation for pain before we leave.  Jonathan’s type of cancer doesn’t really respond to radiation for a curative treatment, however it is supposed to help with pain.  We now have to wait for the wash out period on radiation so our Texas start date got pushed back.  So for the last two weeks Jonathan has been trying radiation.  It was horrible for him though.  He can’t sit and he can’t lay absolutely flat or without movement either.  When they created his body cast for radiation they had to vacuum suction him to the CT table.  He was screaming in pain.  He ended up stopping the doctors and they had to try a few positions.  We gave him as much pain medication coupled with sedatives to try to get him through each treatment.  He did it and made it through 5 radiation treatments.  Hopefully they start helping his pain soon.  But for now, the pain pump is doing a pretty good job compared to what his pain was at 2 weeks ago.  Watching someone you love in that much pain is absolutely horrible. 

For the last 2 weeks besides going to the doctor, and the bathroom, Jonathan spends the remainder of his time in bed.  He is trying to manage pain and his heart rate.  Every day his heart rate seems to increase little by little.  3 weeks ago, his resting pulse was around 80-90.  When he would get up and walk around it would be at 120.  That is high, but not dangerous and we assume probably from pain.  Today as we lay in bed watching tv, his resting heart rate is at 120.  When he gets up to go to the restroom, it hits 150.  When he went down stairs to get some coffee, his heart rate hit 170. 

We were able to find someone that is letting us use their RV to drive Jonathan down to Houston.  We looked into flights, but he can’t sit for more than 5 minutes.  Not long enough to take off and land.  Most of the planes are not big enough to lie down in and require you to sit, or they aren’t big enough to not need to gas up a few times before reaching Houston.  Jonathan has almost lost the ability to make it up and down the stairs and getting to the bathroom is tricky… We just thought allowing him to lay down and have easy access to a rest room would be the best solution for him.  We have his first doctor appointment on the 22^nd in Houston so we are hitting the road first thing on Friday the 19^th.  My dad is coming with us to help with the boys while we have to be at the hospital and will help drive.  We lucked out that my sister Mica sold her home this month and while building their new home, happen to be homeless.  So we have someone to take care of our place while we are gone. 

This week we spoke with the doctors in Houston and hopefully have more of a time frame.  In the first few patients of this trial, the trial results did not go well.  They actually lost a couple patients.  But the last couple patients they had, everything went very well and they had little side effects, the T-Cells results did what they were hoping for and the patients were allowed to go home after 2 weeks.  We don’t know yet if it ultimately worked but you know…  So we are hoping to only be in Texas for 2 to 3 weeks.  But we know some times things don’t always go as planned so we have signed a 1 month lease at the apartment across the street from the hospital. 

Jonathan and I are both really looking forward to going to Texas.  We sort of feel like this is our opportunity to run away and just be us.  I have been feeling angry lately and have sort of been withdrawing from people.  I’m easily irritated by things people say, and I don’t want to snap at people, so I just want to be left alone.  I know anger is part of grief, and I think with cancer, the grief process is long and drawn out.  Over the last month I think I have already started to grieve the loss of my husband.  Some of you may judge me for saying that because I haven’t lost my husband.  But day by day I’m slowly losing him.  My Jonathan is a dad that likes to play with his kids, take them golfing, wrestle with them on the floor.  Now he can only read them books in bed.  My husband helped me in every way he could, we were a team.  Now I care for him and our once wonderful marriage is still full of love, but is so much different than it used to be.  He and I have both lost, and just keeping losing pieces every day.  So yeah, I’m getting angry…

The last few days Jonathan has yet another new symptom.  When he breathes he has a crackle sound coming from his throat.  Almost like the sound of pop rocks candy.  When you listen to his lungs, they sound clear but when you read about that symptom there are a couple possible options.  The first being pneumonia.  Jonathan has for the most part of the last month been laying on his back in bed.  So that isn’t out of the realm of possibility.   The other more serious option is pulmonary edema.  Fluid buildup in the lungs.  There are lots of things that can cause this.  Trauma to the lungs… like maybe tumors on the lungs possibly.  A pulmonary embolism, but he isn’t having chest pain or shortness of breath.  I was wondering if it might be cardiomyopathy.  This can be from a faster heart beat… which he does have and seemingly getting worse.  Ultimately we all know fluid buildup is not a good sign.  After we get his CT tomorrow we will have the doctor look at it and see if I have some valid suspicions or not.  Jonathan is starting to get some anxiety over this and seems to be weighing himself more frequently when he gets up to use the restroom.  He has gained a few pounds over the last few days, but then again so have I! 

Last week Jonathan and I met with a couple people from hospice.  We are trying to learn what they do, and what help they can offer.  We are 30 so we ultimately know nothing about hospice!  So to fill you in, Jonathan does qualify for hospice but he would have to be deciding to stop any form of treatment.  They are ultimately comfort care that would allow him to be home and not having to go to the ER for stupid things like pop rock sounds.  They do offer a palliative care option through Horizon Hospice, which would be helpful.  We have started working with the palliative care team, and are getting lots of answers to questions about actual hospice.  We had a very tear filled night as they left a green form for us to fill out.  It was a DNR type form that we are to place on our frig.  You can only imagine our conversation… If you are found unconscious, not breathing and without a pulse, are we to attempt CPR?  Then the questions get so much more detailed… ultimately it’s like deciding how you want to die.  It is horrible, and Jonathan doesn’t seem to want to decide.  How could he?  I was so grateful that the hospice people told me I need to bring all my legal paperwork with me to Texas.   So as I was organizing that, I found our medical directive that Jonathan and I updated upon his diagnoses 2 years ago.  He answered these questions thoughtfully and not emotionally.  So I brought these to him and asked him if we should go by that document.  He agreed.  I was grateful to have that because I know right now, we are very emotional about this.  For those of you out there that do not have your paperwork in order for something horrible like this, I’m telling you this was a gift to have.  For me I know I want need to question myself and what Jonathan would want and to know we made a sound choice not an emotional one. 

So today I’m going to work on packing clothes and getting to the grocery store and get things ready to load into the RV.  I did want to share a little thing someone shared with me this week.  It is from a devotional where Paul shared about how everything that had happened to him, helped allow him to share the news of Christ.  Our scars and storms (And man do I feel like we are in a hurricane right now) are part of our story that brings us where we are today.  I ultimately want our story to help reflect the love of Christ.  Oh and I REALLY want it to reflect the healing power of Christ.  But I understand that might not mean Jonathan’s healings.  But our story may be what someone needs to hear.  That is why I have been so open about this entire journey.  If there is any point to this at all, I pray that maybe we can help someone else.  Or more truthfully allow them to let God help them… even if they are angry.

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.