What a Roller Coaster Ride!

What a roller coaster we are on!  And I don’t even like roller coasters.  Last week things seem to be going ok.  Jaron was recovering well and it seemed the worst was behind us.  Then Thursday night, as I was putting the kids to bed, Jaron started complaining about a headache.  He normally has had pain just where the incision was, but this pain was his whole head.  I gave him a full dose of pain meds but an hour later, it was still so bad.  So I called the on-call doctor and he said to give Jaron another dose of pain meds.  I did that and he still was in alot of pain.  We decided to go to the emergency room.  As we drove, Jaron became so nauseous and was in so much pain.  I was so worried about him.  As we pulled up, I could hear Brian Reagan’s sketch on no valet parking at the emergency room.  “You go in.  Tell them you’ve been shot!”  If you haven’t seen it, look it up on Youtube.  You will love it.  Anyways, we pull up and I go in and tell them we need a wheelchair.  They came out to get Jaron and he could barely get out of the car.  He was green and pale and clammy.  He looked terrible.  They quickly got us into a room and put Jaron on a bed made for a 5 ft woman weighing 100 lbs.  It was so uncomfortable.  During this journey I have felt bad for myself.  This has seemed like a hard trial for me.  But seeing Jaron so sick, I no longer felt sorry for myself.  I realized that what I have been asked to do is not even close to what Jaron has been asked to do.  My big, strong, healthy husband has to be sick, and weak, and in pain.  Boy, it is hard to watch him be like that.  I cried a lot because I felt so bad for him.  Well, after two doses of nausea medicine and two doses of pain medicine, the pain calmed down.  They did a CT scan and everything looked ok.  We decided that it was because Jaron went off the steroids too early and his brain was swelling.  Thankfully they sent us home.  That was the most miserable experience.  We were so happy to be home and in our own bed.  I gave Jaron some steroids and we went to bed.  After a few hours sleep, we got up with the kids and were grateful that Jaron’s headache was gone.  We sent the kids off to school and went back to bed.  

My mom, who is constantly the heroine of this story, decided to take the kids for the weekend.  She loaded them up after school and took them to her home.  She lives by my sisters so my kids got to spend the weekend playing with cousins and being loved by grandma.  It gave Jaron and me a lot of quiet rest.  It was so lovely.  We napped and watched movies.  We went on walks and worked on his speech therapy.  I was so rested by Sunday evening.  It was the greatest weekend.  

Almost from the beginning of being in the hospital, Jaron’s feet and legs hurt.  They have felt very stiff.  Walking has been painful for his feet.  We talked to the doctor last week and he explained that sometimes during surgery, blood will get in the spinal fluid and settle in the lumbar system which will then cause pain in the feet and legs.  We were told that it would go away.  Well, it seemed to get worse.  Walking was very painful for Jaron.  We applied heat, did massages, warm baths.  The pain just kept getting worse.  By Monday night Jaron was in so much pain, he couldn’t sleep.  We had doctor appointments Tuesday so I called ahead and said Jaron was in alot of pain.  They said to come in and they would check him out.  Just getting to the car that morning was excruciating for Jaron.  He said it was the most pain he has ever been in.  Well, watching him in so much pain, and preparing myself for doctors appointments to talk about CANCER, had me in a really emotional state.  I cried most of the drive down.  I missed our exit and then the next one.  I almost rear ended someone.  By the time we got there, I was already saying it was a terrible day.  Jaron tried to walk to the appointment but he couldn’t so I got him a wheelchair. (Turns out I am as good at pushing a wheelchair as I am at driving a car.  I almost dumped Jaron two times!)  We showed up to our appointment 15 minutes late.  The first thing they wanted to do was to hear about Jaron’s leg.  They feared a blood clot, so they decided after the appointments, we would get a scan of his leg.  Then we got down to business.  Jaron will start radiation in about a week and a half.  He will do radiation Monday thru Friday for six weeks.  This can cause a lot of fatigue and swelling.  The swelling can cause the communication issues to come back but should get better once radiation is done.  After meeting with the radiologists, we then met with the oncologist.  There was a lot of talk about Jaron’s tumor.  His type of tumor, anaplastic astrocytoma, has different categories.  The mutated kind is the good kind.  It responds well to treatment and can stay away for 20 years.  The first initial tests say he doesn’t have this kind.  We have the kind that comes back and when it does, it might be grade 4, the glioblastoma.  It was hard news to hear.  We will most likely beat this tumor.  It is just hard to know that we will have to keep fighting tumors to keep Jaron around.  Jaron will do chemo at the same time as radiation.  He will take a chemo pill every night along with nausea medicine.  He will do this for six weeks.  Once that is done, he will take a four week break.  Then for six months he will take the chemo pill for five days out of every 28 days.  Once he is done with that, they will do scans and see if the treatment was successful.  There are lots of bad side effects but some people do fine with it.  So we will see how Jaron does.  

After leaving those appointments we went to the University hospital and did a scan of Jaron’s leg.  They found that he has a blood clot from the top of his thigh to the bottom of his foot on his left leg.  Jaron’s leg isn’t really swollen and red so it didn’t have the normal signs of blood clots. But sure enough, it is completely filled with them.  They sent us home with shots he has to do twice a day.  The shots stop the body from making more of a blood clot.  Then, the body absorbs the clot over the next few weeks.  There is a risk that the clot will break off and go towards important places like the heart or lungs.  There is also danger of his brain bleeding where the surgery took place.  Jaron says that this pain is worse than after the surgery or when his brain was swelling.  He can’t even walk on it.  He feels relief if he has it elevated but once he tries to walk, he can barely stand it.  Poor man.  I wish there was a quick solution for this one but we just have to wait for the body to dissolve it.  

So this roller coaster has given us some really hard times but some calm days.  I am learning to live one day at a time.  I used to be such a planner.  Now it is hard for me to make plans for tomorrow.  I always loved mindfulness but struggled to apply it in my life.  Now I am getting a good education of living in the moment. I am learning to endure the hard things happening right now.  I am also learning to see the good happening right now.  And there is a lot of good.  So many of you are blessing our lives.  My heart often overflows with gratitude at all the kindness being shown us.  Thank you for blessing our life.  

I ran into a friend the other day.  She commented that when she reads this blog, she often thinks, “If I was going through this trial like Joni, I hope I would handle it like she is.”  I thought that was very kind of her to say but I assured her that she would handle it well.  I am nothing special.  I am making mistakes and having bad moments.  But I have learned through other trials that leaning on the Lord is the only way to make it through these hard times.  I used to really beat myself up when I would hear other people’s trials and they were so much bigger than mine.  I would wonder how they could handle such a big trial and I couldn’t handle something small like a grumpy toddler.  A wise counselor taught me to not compare trials.  She said comparison is the thief of joy.  She said instead of comparing, I should be inspired.  She said to look at others and see that by relying on the Lord they were getting through some really hard things.  I could then apply that to my life and learn that by relying on the Lord I could get through whatever I was asked to do.  This life is hard.  Everyone has trials.  But I truly believe that the Lord will help us through all of them.  He has helped me continue on when I want to sit down and throw my hands in the air.  He comforts me when my fears of the future seem too great.  I am so grateful that he has helped me through so many trials.  He has been there through my many miscarriages, through my struggles with anxiety, through losing my dad, and now through caring for my sweet companion.  How grateful I am to know my Savior and to have Him by my side.  Without Him, this trial would be more than I could bear.  What a blessing He is in my life.  So take heart.  What you are going through is hard, too.  But you are not alone.  And know I love you for reading about us and sending a prayer to heaven in our behalf.  Thank you.

Joni