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.