Half Way!

FOOD SIGN UP  (Nikki will be getting new dates in here this week for next rounds of chemo)

BOOT CAMP FUND RAISER   (Please come join us for a fun work out with the crew from Living Ignited, proceeds help us with medical costs.  It's this Saturday, November 1st at 10:00am)


We've been home for a little over a week now and slowly things are getting back to our new normal, and it feels really good.  I was talking with Jax's teacher from last year, and she said you can tell just from Jax's demeanor at recess that things must feel much better at home this week.  Boy is she right!

At the end of last week I made my way to Target and got all the necessary supplies to get organized.  I've made a medication spread sheet, and every other night pre pack Jonathan's pile of medications for the next two days.  This has made life so much easier to just be organized!  I'm not having to get out of bed every 2 hours and I think both of us are resting a bit better and the stress level in our home is getting less and less by the day.

We've really enjoyed having visitors this last week.  We have watched some football, had dinner etc.  Lots of friends have come to see Jonathan, and some have come to see the kids.  Jax told me daddy has enough friends and he needs to start sharing... And so the kids have had a great week as well!

Jonathan's pain level is now manageable, but varies depending on how hard his physical therapy was.  He can not put any weight on his right leg at all.  In fact, he pretty much has no use of his quad muscles yet.  He cannot even lift his leg if he wanted to.  But with therapy every day, we are seeing slow progress.  Today he even made it down the stairs and went to church with us this morning!

On Thursday we also made it out of the house to go see Dr. Raj for our oncology appointment.  He of coarse was on top of it and had called Seattle for all the pathology results. 
1.  All of the tissue taken from his back for the melanoma was clear, No Cancer. 
2.  The tumor in his right femur was measuring now over 8 cm.  (The original MRI showed it at 6)
3.  The tumor in his right femur was showing 65% necrosis
4.  The margins around the tumor were all negative for cancer

So what we know on the Melanoma is that the tissue scrape done originally probably removed all of the cancerous cells.  We also know there are other spots on his back that also look worrisome but are small.  So every few months we will make an appointment with the dermatologist and have them removed probably two at a time. 

What we can assume about the osteosarcoma is that because it was growing so fast, we probably caught it really early.  It continued to grow at a very fast rate even while undergoing chemotherapy.  Yes we were hoping for a higher kill rate of the tumor, BUT the doctor said, considering it's size, a 65% necrosis is really pretty good for only 2 cycles of the chemo regiment.  So even though we didn't hit that 95%, we are still going to be happy with the 65%.  We also are very happy that the margin of tissue around the tumor is clear of cancer cells.  They got all of the tumor, and the risk of spreading is lower. 

Oh how I wish I could tell you that now Jonathan just recovers and this is all over.  We got the tumor out!  It's done!  We can go back to normal, like our actual normal.  But my friends we've only reached half time...  We get a short break while Jonathan recovers from surgery.  But we have 3 more rounds/cycles that will total around 4 months probably of chemo still to go.  I'm sitting here trying to remember a time back when I played sports that I would have sat in the locker room at half time after having my butt handed to me and possibly having that feeling like I wish this was over and I don't want to go back out there.  I can't remember ever feeling like this... I'm not a quitter!  But I don't want to go back out there this time...  This is the hardest thing I've ever done, and I'm just his wife.  Honestly though, as I sit here and accuse myself of wanting to be a quitter, the truth is, I never wanted to start in the first place.  Those of you that know me, know I want to be the best I can at whatever I'm doing.  And so today, I'm helping Jonathan kick cancers butt.  We aren't quitting and I'm going to be the best at this as I can be. 

Our second half of this wild ride starts on November 11th, Jonathan will check back into the hospital for chemo.  The nasty stuff right off the bat.  You have to remember that this type of cancer is so microscopic that is spreads so easily.  So even when you think you have it, you don't.  Now that the tumor is out, we still need to kill everything in him that could possibly be attempting to spread.  Now comes the hard part.  We do the chemo, and just hope it was enough.  The reality of this type of cancer is that once we are done, for people that treat this properly, the survival rating is still only 70%.  This horrible cancer comes back!  So really quitting isn't an option because that 70% number would drop drastically. 

Today I spent some time looking for encouragement when it comes to endurance.
Romans 5:3-4  We rejoice in our suffering, knowing that suffering produces endurance, and endurance produces character, and character produces hope.
James 1:2-4  Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

Surgery

Click here to sign up for a Meal  (No meals needed this week)

Boot Camp for a Cause  (Come work out and help raise some money, I think I'm going to try to get Jonathan to this on  
November 1)

I know everyone wants to know how Jonathan’s big surgery went.  I’m so sorry it has taken me so long to get the update written, but this week has been absolutely crazy!  I’ve become a full time nurse, and since the boys haven’t seen us much lately, they seem to want lots of mommy’s attention as well. 

As you know from last week’s blog, Jonathan was diagnosed with methotrexate induced meningitis the day before he had surgery.  So they decided to proceed forward with surgery.  So as planned, my parents brought the boys to Seattle so we could be together as a family before Jonathan’s big surgery.  They didn’t take him down to pre Op until 11, so we were able to spend some time together with the boys.

So at 11:00 a.m. on Thursday morning Jonathan and I wheeled off down to pre Op.  They began to place IVs and the anesthesia team came and placed a nerve block in his right leg.  The surgeon came in to inform us Jonathan has become a real pain in the ass with the meningitis and all, But that they were ready when we are.  I hate that feeling before a big surgery… the nerves are awful.  Jonathan was shivering as if he was freezing but wasn’t actually cold.  I was totally sick to my stomach and it seems to take forever before the O.R. is ready and the transport team wheels him away.  I think they took him back shortly after 12:00.

My sister Randalynn, and Jonathan’s mom Dede came to hang out with me during Jonathan’s surgery.  I was told it would take about 4 hours.  So we went down to the cafeteria for a mediocre lunch at best.  Then we made our way up to the surgery waiting area.  At about 5 hours the surgeon came out to update us.  He said everything was going well.  They had to remove 7” of Jonathan’s femur.  They were able to get the entire tumor and that overall the surgery was successful.  All great news!  However he never talked about the big question… How dead was the tumor?  (If you’ve been following along with the blog, you will remember we were hoping for 90%-95% necrosis of the tumor, this shows the chemo is successful and reduces the risk of spreading the cancer cells during surgery)  So I asked about the tumor.  He said that the tumor was actually very “interesting.”  He said part of the tumor looked like a low grade tumor and portions of it looked like a high grade tumor.  He said he is very interested in the pathology report which will take about 2 weeks.  But he was certain that the tumor was not nearly as dead as we were hoping.  Anyway they were closing him back up and then after he was in recovery for a while they would call me back.

So for the next 4 hours that we were waiting to see Jonathan, the waiting room slowly started to thin out.  Everyone was going back to see their loved ones as we waited.  Well everyone but this huge family… The mother came over and sat down with us.  This family was also from Spokane, and their son, who is also a father of 2 and a husband had been in surgery since 5 am.  He had a brain tumor.  There have been countless numbers of people that have told me what perspective our situation has put on their lives.  And as I sat there and talked to this mother, I felt a level of perspective myself.  I know both of these men face the same scary scenario but in a very different avenue.  I felt so grateful that the risk of our surgery was the loss of his leg, not the loss of his ability to breathe or ever be who he really is.  Just getting the tumor out was a much lower risk.  And at about 8 hours of waiting for Jonathan, I had to watch this family as the team of surgeons had to come and tell them that they could not remove the tumor without him being on a ventilator for the rest of his life.  Losing a leg seems like no big deal now... And he didn’t.  He kept his leg and everything went as we hoped for, well everything except this “interesting” tumor.  But we have so much to be grateful for!

Finally at 9 pm I was able to go back to the post Op.  Jonathan was doing much better.  Apparently he had woken in a ton of pain, and the anesthesia team returned to do a full epidural.  So now he was resting much more comfortably.  We got him upstairs to his room and continued to manage his pain.  He had lost enough blood that he was borderline in need of a transfusion, so his pulse rate was crazy high.  They had an alarm set to his pulse rate… If it reached above 130 the alarm would sound.  Lets just say it was a very long evening.  If Jonathan worked up enough energy to just move his head that would raise his heart rate to sound the alarm. 

On Friday afternoon physical therapy forced him to sit on the edge of the bed and attempt to stand.  This was not a good idea!  Because he had the epidural in, he couldn’t feel his bad leg, but he couldn’t feel his good leg either!  He is not to put any weight on his bad leg and because he can’t feel anything, I think he was bearing weight.  And needless to say afterword, he was in a ton of pain, and his pulse rate was racing. 

After recovering from Friday, Saturday was much better.  His pain was managed, his heart rate was improving, and we got a nicer physical therapist.  He was starting to eat a little bit, and we were beginning to see some definite recovery.

Sunday we began to ask to remove the epidural.  Jonathan was getting frustrated with Physical Therapy because he couldn’t do anything.  His good leg was actually more numb than his surgery leg.  So just standing was quite difficult.  So on Sunday afternoon they removed his epidural and within 3 hours he had me helping him stand.

Monday he began to complain about his catheter… But we had a very needy next door neighbor so he didn’t get much help from his nurse.  I watched a couple YouTube videos, and it seemed really straight forward.  I think he would have let me if I could have found the proper syringe to deflate the internal balloon thing… He was that desperate.  He was able to start walking the halls with his old man walker.

Tuesday he was mastering crutches and the stairs!  The doctors, nurses and PT people were really amazed at his progress.  They decided he had accomplished all of their required goals for them to allow him to go home.

Wednesday morning the pain management team shot an extra load of drugs up his nerve block and then removed his last cord.  We were able to hit the road!  And I cannot tell you how happy and anxious we were to be on our way home.  Jonathan scared me a bit as we pulled out of the parking garage and he began to get a bit emotional.  He was beyond ready to see his kids, and be in his own bed… I was grateful it wasn’t because I hurt him getting him in the car!  Once we were on the road, He was a whole new man… Here is a bonus video for those of you who are following the blog.  Most of you that know Jon, know he would never do this without the help of a beer or 2.  But I can assure you, besides an oxy, he was drunk on HAPPY!

Early Thursday morning, like 2 a.m. that nerve block had completely wore off.  He was in a ton of pain!  If I could only tell you the amount of medications he is on with the surgery and chemo stuff.  I think my head is going to explode.  I felt so bad that I missed a med or slept through a dosage possibly… but I got him comfortable enough to sleep, and made a goal to get much more organized!  AND then I was back to normal life… Got Jax ready for school, made breakfast, and I even made it to the gym for a quick while. 

Friday was a big day… I got Jonathan in the shower!  It took me 15 minutes to get him ready for the shower, and 30 minutes to get all the dressings back on after the shower!  WARNING: IF YOU AREN’T INTO GROSS PICTURES, SCROLL DOWN QUICKLY!  For the rest of you, here is what his back looks like after removing the melanomas, and then of course his leg. 

Praise:  1. We got to have the surgery and everything was successful!   2. We are home as a family!  3. We have some amazing friends that have made this week a lot better!  4. Perspective, although this isn’t what we want to be doing right now, it could always be worse.  I continue to thank God for all of our blessings, because those are still abundant. 

Prayer request:  1. Jonathan’s pain.  (He is unable to take the pill form of morphine… he was having weird side effects.  Tweaking would be the best description) So we are trying to manage with less strong stuff.  2. The pathology of that tumor, and our plan for the next few months are determined by the pathology.  3.  This may seem weird, but after spending 10 days eating mostly horrible hospital food, I’ve gained some weight and don’t really feel good.  I want to get back on track, get more energy back, be at the gym and be able to do what I need to do to actually take care of myself for 5 minutes. 

Our "Romantic" Pre Op week

Last week was a whirl wind as we learned some good news for a change and then were quickly planning our rather long stay in Seattle.  We found out Jonathan's surgery would be on a Thursday and unfortunetly his preop would be on Monday.  We contemplated making the drive back and forth, but with some encouragement from my mom we decided to make an attempt at a romantic couple of days before Jonathan was in really rough shape.

We booked a hotel down town Seattle, and made some plans with friends.  We were ready for our trip.  So I busted Jonathan out of the Hospital in spokane on Saturday morning.  We spent the day doing laundry and packing ourselves and the kids for the next few weeks.  Jonathan wasn't feeling super great so he kind of vegged for the day and his mom and I got everything ready.  Sunday morning we got up and decided we wanted to take the boys out to the pumpkin patch as we have done that every year since Jax was born.  So we figured this was  our last chance.  Jonathan had a pretty bad head ache and wasn't really feeling up for our adventure, but as usual he put a smile on his face and made the best of it.

After our adventure with the kids, Jonathan and I hit the road to get on our way to Seattle.  He was feeling worse as the day progressed and actually slept most of the way as I drove.  He said his neck was sore and his head was just killing him.  Once we got to the hotel we checked in and Jonathan went right to bed.  Made me turn off all the lights and was feeling so quilty that I was going out for a romantic dinner for one.  I ran him a warm bath before I left and was hoping that may help a little.  Upon returning to the hotel Jonathan seemed really down.  He didn't feel much better and I could tell he was discouraged he felt so crappy.  (I think he was hoping to to get lucky before he was really out of commission so getting sick really was not what he wanted)

The next morning we were up early, I drug him out of bed to get to our doctors apt by 7:30.  He did his pre op appointment and pleaded with the doctors to do something about his head ache.  They thought maybe he had an ear infection or something so they wrote up a scrip for antibiotics.  We went right back to the hotel and Jonathan went right back to bed.  I decided to go walk around and let him have a quiet room to sleep.  I returned about an hour an a half later to him throwing up!  I immediatly called Dr. Raj our medical oncologist in spokane.  After going over his symptoms, He was worried about meningitis and told me to take him to the ER right away.

Jonathan's pain in his head was the worse pain he has ever felt.  He was flat miserable... as the doctors would ask questions, be couldn't even talk.  He would point to me as if he wanted me to give them answers.  The only questions he was answering was pain level.  I began to ask for medications by name as they began to examin him.  Never did I think in a million years would I know what I know now.  The nurses told us on day one that we get this way... more informed about medications than you would ever want to be.


The ER doctor agreed with Dr. Raj and performed a spinal tap.  They ran dilaudid, this is synthetic morphine that is 10x stronger I guess, and it wasn't touching the pain.  I asked for Adivan for the nausea which typically knocks Jonathan out.  I figure maybe he could sleep through it.  It did help some but he was still in so much pain he was till vomiting sporadically.  They eventually admitted him, and sent us upstairs to a room.  He contintued to struggle through the night with pain but seemed to be managing the nausea.  But by the next morning the pain was still horrible and the nausea was back.  I was exhausted as I didn't sleep at all that night and was up again helping him change puke buckets.  What a releif when his mom walked through the door.

I was able to go back to the hotel, lay down for an hour (even though I was so worried I couldn't sleep...but I tried).  I took a shower and packed up the room.  So much for our romantic 3 nights!  When I got back to the hospital, my older sister had arrived and got me some food.  Slowly as the day went by, Jonathan slowly improved.  The oncology team eventually eliminated enough of the possible scenarios that they diagnosed him with Aseptic meningitis.  This is basically meningitis caused from the chemotherapy.  On Wednesday he received 14,000 milligrams of high dose methotrexate... Anyone that knows anything about chemo will tell you how high a dose that is.  But the methotrexate is the chemo that kills the "floaters" of the cancer.  So we wanted that super high before surgery, but not so high that it poisoned him.  Guess we found his limit.

Now that we confirmed he doesn't have an infection, the surgeon agreed to continue with surgery.  So today Jonathan is still improving.  He is eating and even watching some tv between naps.  We are ready for the surgery and so glad this hick up didn't change our plans to get this stupid tumor out of his leg.  This is a very big surgery and we know there are serious risks and pray Jonathan still comes out with 2 legs.

I saw this quote on a sign while I was at greenbluff:  "Life isn't about waiting for the storm to pass, It's about learning to dance in the rain."  I feel like lately we are in the middle of the storm.  More like a hurricane.  But as I watched a video of Jax ride a bike for the first time yesterday and see how excited he was, even if just for those 2 minutes, I was dancing!  We are trying so hard to revel in whatever good we can find so we won't get caught up in the storm.

Please continue to pray for him and our family as these next few days are going to be very hard.  I will try to update you all on surgery as soon as I can.

He got the PET scan, and we have the results!

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This last week has really been roller coaster ride to say the least.  After finding out that Jonathan also had skin cancer, I was really beginning to feel discouraged and was beginning to question God's plan.  Why do we have to deal with one more thing?  But it is so funny how God challenges you and seems to come through every time.

On Friday I was on the phone frantically trying to find the right surgeon that would understand enough about our current situation to give an informed perspective on our new situation.  Our medical oncologist was doing the same thing.  After speaking with a guy from Cancer Care Northwest, we came to understand that Jonathan's skin cancer seems to be pretty minor.  He recommended that with Jonathan's compromised immune system that we should not do the more invasive surgery to check if the cancer has spread to the lymph.  This will open up the risk for more complications and more infection.  He seemed to think from the depth of the melanoma, we got it early and this will be a really minor thing.  But we can use this new diagnosis of a new condition to our advantage!  They ordered a PET scan to make sure that is wasn't in his lymph.  (AKA the scan we were waiting to get for his sarcoma)  Why God had to give us a scare to get that next scan done is beyond me, but like I said.  He got the job done and answered a prayer in his own way.  (Maybe I should be more specific as to how I would like those prayers answered next time)  But it was a good reminder that he is in control and even though I don't like something, it doesn't mean down the road he hasn't purposed it for good. 

So Tuesday was a very big day.  Jonathan was mildly sedated to get his MRI.  It did work this time, we got lots of good clear images.  From the MRI Jonathan went in for the PET scan.  By lunch he was starving and we were able to go out for a nice lunch.  After the MRI, Inland imaging gives you a cd with all the images.  So after lunch, I of coarse popped that cd in the computer and began to play radiologist.  I had convinced myself it was bigger!  Well it is bigger...  In my very little knowledge of MRI scans, I can tell you his femur is now broken... Pretty minor but almost certain of it.  I was comparing the images I had from the original scan, and it isn't way bigger, but there were changes.  Then I started to talk myself down off the ledge.  The original MRI was done 6 weeks before he started chemo.  Maybe it grew that much in those 6 weeks?  But to be honest, I was getting down.  Then to top it off, Jax had a really rough day at school.  I really love his teacher and I was able to spend some time talking with her.  It was as if she knew simply by Jax's change in behavior that the stress level from home was high.  That day in school, Jax boldly asked his class to pray for his daddy.  He seemed sad and was not himself.  Neither Jon or I told the boys what was going on, so it is amazing how much kids pick up on just by pure stress levels. 

Wednesday was Jonathan's 30th birthday.  Most people for a big birthday head out to a nice restaurant for a nice dinner and maybe a cocktail.  Jonathan made his way back to the hospital for a methotrexate cocktail.  Worst birthday cocktail ever!  But as we do every day, we made the best of it.  We decided after Jax had his bad day, that he needed some time with his daddy.  So after a much better day at school, I picked him up and brought him right up to daddy's hospital room. 

He was so excited to have some one on one time with Jonathan.  At one point he sent me out of the room for chocolate milks because girls were no longer aloud in the room.  It was "Boy only time!"  They played lots of Xbox.  For a little guy, Jax is starting to get pretty good.  He decided he wanted to test out Daddy's IV scooter.

So they went on a walk, literally around the entire seventh floor, and the 8th floor.  Jax wanted to find grandma Betts who works on the floor above.  He had a much better day, and honestly I think it was a really good day for Jonathan as well.  Jax and I headed home just before dinner was brought over.  We brought back to the hospital a wonderful Mediterranean chicken dish and the best birthday cake made from scratch by Maka.  There was plenty for the entire birthday party that was in Jonathan's room to celebrate.  Then Dr. Raj came to join the party and gave us something to really celebrate.

The PET scans results look good.  There still are no other spots on his body.  This is wonderful because this type of cancer spreads quickly.  So we can stay focused on the knee.  And the new absorption rate of the tumor in his knee is now at 7.  This is less than half of the original number.  So the chemo is working!  The MRI weirdly enough is showing that the tumor is bigger.  This could be explained by excessive amounts of inflammation from the tumor dying, and it could have grown that much in the 6 weeks before chemo started.  But that is why both scans are required... It is in fact bigger, but it is far less active. 

Dr. Raj had already called our surgeon in Seattle and was working on a game plan for coordinating both surgeries.  Now that we have confirmed that this regiment of chemo is killing it, we can cut the tumor out.  So because the melanoma is so minor, Dr. Chappie said he will just do the spots on Jon's back, roll him over and then do his knee all in one surgery.  And by the way, surgery is next week!  It was the best birthday present Jonathan has maybe ever received. 

Jonathan seems to be handling the last round before surgery really well.  We've spent so much time in his room trying to find things to do that we decided we need to start doing good things for others around the hospital.  Make good use of our spare time...  He was feeling well enough to go on a walk, so we decided to make our way down to the pediatric oncology unit of the hospital.  I thought it may lift the spirits of some little kid to see a daddy that looks like they do.  So we mounted a bike bell to his IV poll and he began to skateboard down the hall ringing his bell to let the nurses know he was on the loose.  (he tries really hard to make them laugh, and Jonathan is quickly making friends)  Once we got to the pediatric unit, Jonathan was instantly jealous... this place was WAY more fun looking!

They even had actual race car IV polls!  And then on our way back, Jonathan discovered that the kids fish bridge was at a slight angle... AKA a perfect ramp for his skate board.  He road it down the entire way and only hit the wall once.

 

Jonathan had a guys night planned for the night.  Thank goodness it is football season and he can plan football parties in the hospital.  We are so grateful to have so many wonderful people that come to visit him.  I brought down an extra TV so the boys could play Xbox AND watch football.  Making the best of your circumstances really makes a huge difference in how you physically feel... and having friends to help you do that is HUGE!  (Thank you Dan and Danny)

 

Please pray for us as we make our way to Seattle this week.  Jonathan has Surgery on Thursday and I know this is going to be the hardest part of this journey God has chosen us for.  Jonathan had an old coworker stop by this week who has a husband also in a fight of his own and she said something that really struck me.  "God gives us the grace to deal with our circumstances of today, but he does not give us the grace to deal with our imagination."  I don't have any idea if she came up with that on her own, but if she did, she's a genius.  I know when I begin to get discouraged it is often because I'm going through all the possible scenarios in my head.  If you do that too much I don't see how you wouldn't be discouraged, because frankly you can really scare the crap out of yourself.  Although I'm planning for tomorrow, because I'm a planner to the core of my being, I'm trying very hard to trust God and not worry about tomorrow.  This week will be a true test to that! 

But make up your mind not to worry beforehand how you will defend yourselves. Luke 21:14 NIV

Skin Cancer too... Why Not!

I'm beginning to feel like I'm writing a book.  Our story was getting a bit boring.  So Jonathan has bone cancer and we are in the hospital again... I guess the story was ready for a twist out of left feild that no one expected.  Well this is that chapter.

I first will start with my update on the MRI from last week.  Jonathan and I went in for his MRI on thursday night.  I did actually sleep the night before and we were ready.  Prepared ourselves for the possibility that this thing in his leg is bigger, but really hopeful it was getting smaller.  We understood that there was a good chance we would see no change and get no information from this scan as well.  But what we didn't prepare for was the scan not working!  With each day that passes the pain in Jonathan's leg gets worse.  At this point he gets shooting pain down to his ankle and up to his groin.  We are trying all kinds of pain meds with not much success.  So as he laid on the MRI table, his leg as usual was spasming in pain.  It isn't like Jonathan is moving his leg, it is that he gets this nerve pain which causes his muscles to flex.  SO, they were unable to get any clear images on the MRI because of the involuntary movement in his leg.

What we do now is reschedule the MRI for next Tuesday with an anesthesiologist. They will need to sedate him with a muscle relaxer that will hopefully help with the leg spasming.  So hopefully on Tuesday morning we will get a completed MRI and hopefully not long after that we will get a report on the results.

Now for the twist coming out of left feild:  About 2 months ago while one of the nurses was listening to Jonathan's lungs... You know how they do with the stethoscope on your back.  She pointed out a spot to me on his back.  She said "see how this color surrounding the original spot is different, that is a sign you should probably go get it checked."  So I sort of dismissed her and thought, I don't need one more thing to do.  It is probably nothing.  But one of Jax's friends from preschool has a mom that is a dermatologist.  We've gotten to know them a bit in the last year and develop a friendship.  So one day I ran into Mara, Justin's mom at school.  It was some time later, but I remembered I intended to ask her a favor.  She agreed to just let me take a picture and email it to her and she would let me know if we need to really take the time to come in.  So a few weeks later I finally got around to photographing Jonathan's back and emailing Mara.  Of course she said we probably should come in so she could biopsy them.
                           
So on Tuesday morning when Jonathan's counts were the best and we weren't in the hospital, Mara was able to squeeze Jonathan in.  She cut out 3 spots on his back and measured 2 more that look suspicious but weren't really big.  On Thursday night when I got home from the hospital, literally as I was walking through the door my phone rang.  It was Mara.  I could tell by her voice that she was a bit uncomfortable.  This poor girl had to call me to tell me that not only does my husband have bone cancer, now he also has skin cancer.  The biopsy showed that these spots are stage 2 melanoma cancer.  Not just a simple non spreading type of skin cancer, but a more aggresive type that can spread to his lymph.  He needs to have surgery and he needs to have it pretty quickly.  She said with everything else going on, she was going to refer us on to cancer care northwest and send all of her findings to our current oncologist.

Jonathan spoke with our medical oncologist this morning.  These 2 cancers are not at all related to each other.  This is just a fluke absolutely unlucky weird chain of events.  Ever heard of a 29 year old with 2 unrelated forms of cancer at once?  This is the most dangerous type of skin cancer and we need to get it out.  (I googled it and the first thing I saw was this type of skin cancer causes the most death from skin cancer.  It is caused by genetics and sun exposure...not sure if I want to keep reading but will now be a nazi about sun screen) So Dr. Raj is arranging to have a surgeon come and consult with us today and most likely will be having surgery this weekend and not coming home from the hospital.  We will continue with his methotrexate next week, but may have to delay his cisplatin and doxi treatment until his incisions are healed.  This may in the long run push surgery on his knee as well but don't really know anything for sure.  We need to consult with our surgeon in Seattle.  Dr. Raj did say that during surgery they will inject a dye and it will tell us if the cancer has spread to his lymph.  However when we did the PET scan in July, there were no spots at that time.  But this may also offer us another reason to throw the rules out the window and just get another PET scan sooner.  So we are hopeful that this will just be a surgery and we can move on from this bump in the road.  However it is quite discouraging that it may effect his other surgery, or maybe it will help get a PET scan sooner... trying to think of some reason this could be positive, but I'm really stretching. We did find out that the reason he can not get another PET scan is not because it is too toxic, but actually because the insurance won't pay for more than 1 every 3 months.  So, now our dr can argue that this is a separate issue requiring another scan.

As for now we are still gathering information and forming a new plan.  We will see what the surgeon says and I'll let you know the updates as I know more.

I have had kind of a rough week.  After working myself up about the MRI, then not getting it... It just is hard to stay positive all the time.  I really try not to have pity parties, but bad days are inevitable.  So I took charge again, decided I needed to stop comfort eating and get my head on straight.  The girls took me out on Tuesday night and I'm really learning how much it helps to feel love.  I feel like my faith is being challenged and I'm really trying to remain focused on God's love and the love from others.

About a month ago my older sister sent me a small section of a blog written by a cancer patient.  It was actually written to her family and friends.  At the time when I read it, It seemed like good advice, but now I can tell you how right she was.  She was talking about just doing something and not waiting to be asked.  I can not tell you how many people say to us, "let us know how we can help you." And I truly believe their offer is sincere.  However most of the time, it is so hard to ask, and your so caught up in everything you don't even know what to ask for!  The topic reminded me of a sermon called Love Does.  I think if you asked most people what Love is, they would describe a feeling.  After what we are going through, Jon and I would tell you it is an action or a verb.  I remember some time ago Pastor Joe talking about this topic and how love is a command.  You can not command someone to be happy or sad, but you can command an action.  God so loved the world that he GAVE!  I think he mentioned in 1st Corinthians in the love chapter that every discription of love was a verb (in the greek text).  Love is the feeling that you get that is an involuntary response to an action.  I can not tell you how many people have given us this response.  It is so nice to just come home to a mowed lawn,  have someone bring you dinner, or have a gift waiting for you at a front desk or in the mail.  Dinners, car washers, childcare help, cleaning, groceries, and Jonathan's favorite, visitors at the hopital... I could go on and on.  I'm not telling you this so you all will do something for us...you already are!  But I just know in times like right now, feeling loved really helps a ton.  An offer doesn't get the job done.  We are so grateful to have so many people that DO so many things.  So today my advice is this, if you know someone that needs something, don't offer, tell them when you are doing it.  Your actions will make them feel love so much more than just the words that are simply easy say.

 Jonathan is doing pretty good in the hospital this week.  Giving the nurses heck as usual and trying to make the best of each day.  The nurse told him he needed to gain some muscle back so this is what a few liters of saline can do! 

A Good Week...With a Hanger

I know I'm a little behind on the blog update.  BUT we are having a good week and so I'm very busy with other random stuff that I can't normally get done.  So here is a bit of what has been going on the last week and a half. 

I want to start off with a few praises and things to be grateful for.  Last week I asked for prayers on Jonathan's hearing test, and for no infections.  This last week when Jonathan had his excessively low counts (Neutropenia), he did not develop any infections!  I think having the Neulasta shot on time helped, so that is something we are very grateful for.  We also had his hearing tests done again, and he did loose a small amount of hearing in the higher tones, but technically is still in the normal hearing range.  Also good!  We got to spend 5 days with my cousin Kelsey.  This sweet girl is in college and wanted to get up here to help before school started.  We are so grateful for our family and having so many people offer to help in so many ways.  It was so nice to have her here and for the first time in a while I was actually able to get to the gym every day.  Barre class and running a few miles every now and then really helps my stress level I think.

*I have to include this funny story about Jude and Kelsey, well just because if you know Jude this will make you giggle.  The first day Kelsey was here, I had taken Jax to school and went to the gym.  So Kelsey and Jude were getting acquainted.  They were playing in Jude's room and Jude was putting Kelsey down for her nap.  (Side note, Jude has a lock on his bedroom door turned around backwards so we can lock him in...safety reasons)  Anyway, Jude left Kelsey in bed and when he left he locked the door.  Kelsey quickly jumped up after hearing the lock and started yelling at him to unlock the door.  He continued to tell her "you go night night, I go play!"  Then eventually ran off giggling.  Luckily Kelsey was able to pop the lock from the other side.  I think Jude considers this his childcare initiation, and probably had this planned.

On Sunday afternoon we made our way over to Seattle to see Jonathan's surgeon Chappie.  We stayed with our friends Katie and Rob and I got to play with their daughter Addie for a night.  Our appointment was early Monday morning, and the doctor surprised us when he said he wanted to change the surgery date from October 16th to mid November.  He ordered all new scans to be done and was going to decide for sure on a date after analyzing the new scans.  OK... stick with me here, I'm going to try to explain the medical stuff the best I can.

Typical protocol for Osteosarcoma is 2 rounds of their specific chemo regiment.  These 2 rounds take 10 weeks to complete.  After those 10 weeks are completed you remove the tumor or cancer source through surgery.  Then you do another 3 or 4 rounds of that chemo regiment assuming the tumor was dying at the expected rate. 

So when we got home and began attempting to schedule new MRIs, CTs, and PET scans, our oncologist here explained that  we can not get another CT or PET scan yet.  Apparently these types of scans are so high in radiation you can not repeat them any sooner than every 12 weeks.  Right now, we are at week 8.  SOOO... the medical oncologist called the surgical oncologist and decided that they wanted to wait for these scans to be done to proceed with surgery.  So they are breaking standard protocol and doing another round and then will have scans done at week 12.  Unlike many other types of cancer, this type of cancer can not be checked through his blood levels and can only be measured through a PET scan.  How a PET scan works is that it measures the rate of absorption the tumor is taking in glucose.  The higher the number the bigger and more active the tumor is.  This type of tumor also may not shrink as it is dying, so an MRI isn't necessarily accurate to judge the death or the tumor because the size may not change.  If it is growing however, and MRI will tell us the chemo isn't working!

Once again I had to speak up and let the doctors know that this makes me uncomfortable.  I understand that we need the tumor to tell us if we are successfully killing all the other cancer cells floating around his body.  That's why just removing it isn't a good idea.  They have no other way to know if their chemo regiment is correct.  HOWEVER if it isn't working I don't want to wait another month to know that it was actually growing.  An MRI will tell us that much.  So the oncologist agreed to order the MRI and said he agreed with my thought process.  If it is bigger we will call the surgeon back and formulate a new plan.  If it is smaller or the same size, we do as he recommends and do another 5 weeks of chemo. 

I'm still a little confused as to how "standard protocol" for treating osteosarcoma doesn't meet the "standard requirements" of the PET scan?  We can't possibly be the first patient to encounter this problem.  Did someone miss ordering this test early on in the process?  So next time I meet with Dr. Raj, we may have a longer discussion on this.  But for now we get the MRI and see what it tell us.  It is very hard to just not want to get this thing out of his leg!  (Jon keeps asking me if I'll just take a meat cleaver to it)  So Please pray that this thing isn't growing and maybe we get lucky and see that it is actually getting smaller through an MRI.

We are excited to continue a few more days where Jonathan is feeling good.  The boys actually got him out in the hot tub this week, and he went and got 9 holes in at the golf coarse.

 I got to go to a really great event that WA Trust did for our family as well.  FYI really awesome idea!  The culinary school out at SCC does a cooking class thing.  We each took a recipe and made a meal to freeze.  So now we have some great meals ready to go when I'm in a pinch and I can just pull them out of the freezer and reheat!  So cool!  Thank you so much for that, and I really enjoyed meeting some of the awesome people Jonathan gets to work with.

 Jonathan Starts his next round of methotrexate on Wednesday the 24th.  I will let you all know what we hear on the MRI soon.  (that's the hanger...)

He has good weeks, and he has bad weeks

This week was a bad week, but we were a little more prepared this time.

Jonathan is on a random rotating schedule of a few different types of chemo.  His very first round did not go well in terms of side effects.  His subsequent rounds went much better.  Now this week we knew we were starting our rotation again from the beginning, so now we know more about what to expect. 

Last time Jonathan received this type and dose of treatment he became very sick.  Then once he began to recover he began to suffer from neutropenia, so he was readmitted to the hospital.  So I began to research and discovered a few things.  First the obvious, we needed way more options of anti nausea meds.  Second, his Neulasta shot was delayed by 2 to 3 days.  A Neulasta shot is a medication given to increase your white blood cell counts.  Almost like a rescue medication for your immune system after doing chemo.  Last round of this type of chemo, Jonathan was admitted to the hospital on a Wednesday, and was not released until Friday afternoon.  He then had to wait until Monday to get this shot at the doctors office.  (They do not administer this drug at the hospital... not sure why)  As I read through pages upon pages of info given to us, I discovered that this shot is to be given no less than 24 hours after your last dose of chemo.  So after a discussion with the doctor about this possibly contributing to his neutropenia we decided to admit Jonathan to the hospital a day early.  This would allow him to be released on Thursday, and get his shot at the oncologist's office on Friday.

So this time around, I called the charge nurse, Jonathan got the upgraded suite, and we walked right in, no waiting.  FYI this is the end of life room (probably not the formal name), but it is a very nice room.  It has a frig, microwave, coffee area, dinner table and a carpeted play area for the kids.  Becoming a frequent flyer and getting to know these nurses has its perks.  So he got started on chemo Tuesday at about 3:00.  After a few hours it was a quick reminder how hard this particular type is on him.  His color changed to very pale, his eyes became red and then the nausea... But even still he has his sense of humor.  When I arrived back at the hospital with dinner, Jonathan says "I left you a present in the bathroom."  Every women after hearing those words would proceed with extreme caution!  I went into the bathroom to find a hospital urinal fill with bright pinkish red pee... He just knew I would want to see it!  (Sadly I am kind of weird like that... It was a very strange color for pee)  Only after 10 years of marriage right?

Anyway, he was discharged on Thursday as we planned, but with some bad news.  His blood tests are beginning to show that his liver enzymes are becoming elevated.  The previous two types of chemotherapy drugs are processed through the liver and are very hard on his system.  What this means is that we need to watch this closely and possibly change the dosage of his treatment.  This news shot me right back into reality.  I guess lately I've gotten to this place where we just live day by day, and deal with little issue after little issue.  But this was a huge reminder of the big issue.  If we change the dosage of the chemotherapy, his chances of beating this decrease.  We are still in a war for his life and not just fighting these little battles.  However we can't give him such high dosages that his vital organs begin to shut down. 

It is really incredible how God puts people in the right place at the right time.  So this week my cousin Ryan, who is a paramedic, and his wife Haley, who is a nurse on her way to be a nurse practitioner had volunteered for the week to help with the boys.  So immediately upon hearing about his liver enzymes they sat down with me and started reviewing Jonathan's meds.  I'm not sure if any of you are aware of the amounts of medications cancer patients are on, but I feel so overwhelmed and out of my league.  Every drug has a side effect, and is processed in a certain place in the body, and I am so overwhelmed with trying to make sure he is getting exactly what he should have.  These two sat down with medical apps and reviewed everything he was on.  What dose, where the body processes it, alternative options.  We discovered he is actually nearly over dosing on Tylenol according to the new information of maximum dosages.  And many of his any nausea meds and pain meds were being processed through his liver which is being overwhelmed already with chemo.  So when I took Jonathan to see the oncologist on Friday for his shot, I had notes upon notes of questions about medications.  Needless to say we did end up making some changes.  Nothing he was taking was wrong, and I have 1,000 wonderful things to say about his doctor, but once again being your own advocate for the BEST option seems to be required.  And I love that the doctor doesn't get offended by all my questions and jumped right on board.

Now on Friday when we went to the doctor, Jonathan was really sick.  He just feels awful after the doxorubicin and Cisplatin chemo drugs.  So he was in bed all day.  Late that afternoon I went up to start packing for my trip to Moses Lake on Saturday.  When I went in the room I woke him up of coarse, so he decided to get up to use the restroom.  As I was sorting through my underwear drawer I heard the bathroom door slam against the wall and the loudest sound of someone hitting the floor as I've ever heard.  As I ran into our bathroom I discovered Jonathan unconscious on the bathroom floor.  That feeling right there is something I would wish on no one... In sheer terror I began to scream for Ryan.  He got right in there, found a pulse, made sure he was breathing etc.  Jonathan then began to regain consciousness and seemed to have not hit his head.  We opted not to call the ambulance and instead I immediately called the doctors cell number and talked things over.  I guess passing out is a side effect and Jonathan was pretty dehydrated.  Understandable since he is so nauseous, water or anything really just wasn't something he wanted.  So we made some new ground rules.  Jonathan must sit for a minute or more before standing, and now must sit to pee, and he promised to never do that to me again!  Frankly I think it scared both of us. 

During my car ride to Moses Lake that night, I did some reflecting.  What would I have done had a paramedic and nurse not been present?  I know how to check if he is breathing, and if he has a pulse, and I think CPR classes would come rushing back.  But really that isn't that much knowledge.  So I can find a pulse, that just means his heart is beating, but why is he unconscious on the floor then?  What do all the blood pressure numbers really mean?  Unless they were 0 over 0 I wouldn't know normal from abnormal.  So I took some time on Sunday morning to learn some basic first response stuff.  I hate the feeling of being helpless, so that is going to change!  Just one more thing you hope you never have to know/use, but just because I don't want to use it, doesn't mean I don't need to know it.  Ryan and Haley I can't tell you how grateful I am you were with me when that happened.  Thank you!

Each day that passes Jonathan is feeling a little bit better.  His nausea is getting better, but now he is getting a significant amount of cell death in his body so his sinuses are draining etc.  Please pray we don't deal with an infection this time!  Tomorrow we have another doctor appointment at the ENT to check his hearing again after this dose.  Please pray we don't see additional hearing loss.  And maybe they can help confirm we don't have the start of another ear/sinus infection from the drainage. 

To wrap this up, I'm not going to tell you something inspirational I found this week, I'm going to ask you a favor.  This week I've been thanking God that Jonathan was the virtue of health when we started this process.  (Well besides Cancer)  He doesn't smoke or drink so his lungs and liver were in top shape.  We've only been through one round and his liver is now showing stress... what would his prognosis be if it was compromised to start with?  His resting heart rate was that of an extreme athlete being in the low 50s, now it is in the 80s or 90s.  When he drinks coffee he is in cardio range.  What would we be dealing with if he had high blood pressure or a heart under stress from an extra 50 pounds?  Changing a dose of a medication that can save your life IS just as scary as the outcome of these possible complications.  So for those of you reading this today, this is my plea to you.  For your parents, and your children and your friends and most importantly yourself, Take a look... an honest look, and ask yourself how well you are taking care of yourself.  You never think in a million years that something like this can happen to you, but I'm here to tell you that it can.  And being as healthy as you can be matters!  You could be 29 years old with 2 children AND with cancer, and you need the best shot possible.