Fighting Depression and Cancer

I think its time I posted another update on Jonathan.  It has been 2 straight weeks of chemo and posting a blog has gotten away from me.

For those of you who have come to visit Jon in the last month or more, would probably say he hasn't been himself.  Our closest friends and family have told me they have felt that way, but most people probably wouldn't notice, or wouldn't say anything.  But the truth is, this is really starting to take its toll on Jonathan, and I would be lying if I didn't say me too.

I really noticed something was wrong when we came to start chemo all over again after Jonathan's surgery.  When we checked into the hospital, Jonathan didn't joke with the nurses, he didn't turn on the TV, he just laid there.  As his wife, it was awkward, and I'm sure he was sick of me asking if everything was ok.  It was time for another hard conversation, but for some reason I kept saying to myself "the first step is admitting there is a problem."  I love that Jonathan is so easy to talk to, and he is so honest.  So I don't know why I was surprised that the conversation was as easy as this... Sweety, do you think you might be depressed?  "I know I'm depressed" he said.

Unfortunetly he was getting that nasty kind of chemo and he was about to get really sick.  So we didn't really do anything, but I decided to start seeing a counselor.  I found a wonderful gal at Cancer care NW that specializes in counseling people through this process of cancer treatment.  She gave me tools to use while talking to Jonathan.  She gave great advice and answered some lingering questions.

If you are married, you've probably had some hard conversations with your spouce.  But for a second imagine one of you has cancer, a serious cancer.  Now imagine what kind of pillow talk you have with your spouce?  I imagine that couples reaching their 60s and 70s probably start to have these more serious conversations, but never did I ever think at 30 I would be talking about some of this stuff.  Truthfully it's amazing it has taken him this long to start really feeling depressed.

Jonathan is a wonderful husband.  He is an amazing father.  He has many friends.  He provides for our family and is always so generous to others.  He loves to be an active person, playing golf, spending time at the gym.  To him, he feels like he has lost  or failing at all of these things.  He has been more or less locked in a room or hospital room for months now.  It's not hard to see how someone going through what he is going through would get depressed.

But we weren't just going to accept that he has cancer and he is just going to feel depressed.  We sure as heck will fight that too!  After Jonathan started feeling better after the last horrible dose of chemo and we were heading back to the hospital for a 3 week stint, we decided to talk to his doctor.  I can't tell you how proud I am of him for being so honest about this.  I feel like so many people are ashamed of feeling depressed and so they don't say anything and continue to live in misery.  Unfortunetly Jonathan's doctor told us that often anti depression meds exasterbate chemo side effects.  So at this point we should start trying everything natural that we can.  We are adding vitamin D to his 500 pills.  Now that Jonathan is starting to get around a bit more, we are making every attempt to get out of the house.  We are trying to make arrangements with friends, play games and be social.  (Thank you to those friends that have come by and helped in lifting his spirits)  Jonathan is even hitting the gym with me when he isn't in the hospital!  We are diving into a bible study together on 2 peter, and Jonathan has been working on his own "power scripture" program.  After 2 weeks of forcing natural things that boost your mood, I think Jonathan is starting to feel a bit better.

(this is Ryne, an employee at the Spokane club.  Jonathan was working with Ryne on some lifting when Jonathan discovered his tumor.  Jonathan is so thankful to him... Had he not been doing a work out regiment Ryne put together, who knows how much longer Jonathan would have gone before discovering his tumor.  We were so glad they got to visit again.)

We've been in the hopsital for the last 2 weeks, and home on the weekends.  Jonathan and I were nervous for this type of chemo, as the last time he took it, he got meningitis.  The last 2 weeks they have been treating him for meningitis while also giving him his chemo.  It seems to be working and he has had no syptoms of getting meningitis again.  We are so glad about that!  We are currently struggling with a little cold going through the house.  Seems minor to most, but for Jonathan, minor can mean more days in the hospital.  So we have tried to be careful, wearing masks etc. 

(Jude pretending to be Dr. Raj and help take Jonathan's blood pressure.  He isn't the biggest fan of the mask)

Today we sit in the hospital awaiting another dose of the antichrist of Chemo, right before Christmas. This year is going to be much different than in the past, BUT above all we are so grateful that Jonathan will be home and the 4 of us will be together on Christmas.  (and hopefully Jonathan will be up for watching the boys open gifts, even if we have to do it in bed with him).

There have been so many people that have been so kind to us this Christmas Season.  We are so grateful for you and thank you so much!  There are so many people that show Christ in their kindness.  It is a great reminder of what Christmas is really all about.  We hope everyone has a wonderful Christmas and just take some extra time to cherish the people that you love. We will be!

If you are interested in a hopital game night, please send me a message so we can coordinate.  Last week we did a game night and the 4 of us had an absolute blast!  We would love to start doing that more often!  It has been a long time since Jonathan has laughed that hard.  This seemed like a great way to lift spirits.  Let us know if you are game!

We Have Lots to be Thankful For

FOOD SIGN UP  I'm going to have Nikki add a few more days on the schedule now that it doesn't seem so far out.  Thank you again to everyone that has brought food or has signed up.  This is a huge blessing to us. 

I just realized it has been almost 2 weeks since my last update.  It has been a very long and busy couple of weeks for us.  I think this time of year gets long and busy for everyone though.

In my last post I mentioned Jonathan did way better at home this time.  And in the initial 4 days that were a major struggle before, he did do much better.  But then he got much worse!  According to the Oncologist, Chemotherapy is cumulative.  So each time is going to get harder and longer.  Awesome!  So after this initial 4 days, he started to improve some.  Then he slowly took a turn for the worse.  Instead of having constant nausea, it came in waves.  I couldn't anticipate it so it was hard to medicate.  Just randomly he would get the sweats and the vomiting would start.  Then as usual his sinuses became super congested.  He began to feel like he was getting an ear infection, and sinus infection.  And the worse part was the cough.  He started to get a nasal drip that caused this constant cough.  So no matter what we tried for the cough, it didn't work.  He was up all night coughing for over a week.  Then when you add bloody noses from neutropenia, one morning our bed looked like a murder had taken place.  He also had some pretty severe mouth sores which made eating a huge struggle again.  We spent one evening in the urgent care running tests etc. confirming there was no actual infection.  But on the bright side, Jude discovered that hospital beds make great truck tunnels! 

Slowly Jonathan began to feel better.  By Tuesday before Thanksgiving he was starting to feel almost normal again.  I decided to put him on the scale... It's official Jonathan now weighs less than I do!  I feel like I can not even put into words how horrible chemotherapy is on someone.  Each time that week is behind us, I feel this weight lift off my chest and I can begin to breathe again... Until the next round. 

I don't want to spend much time on all the struggles we are facing, I think by now everyone knows.  This week I've really tried to focus on all the things our family has to be grateful for. 

We got to be together with extended family for Thanksgiving.

We had some of our best friends welcome their first child into the world yesterday.  Gina and Stu we are so excited for you to experience the amazing joy of parenthood.  And thank you for skyping with us so we could meet Ms. Daphny.  We had a friend share her pregnancy with us this week, and like 5 more close friend that are also expecting.  With all of that said, I've really been thinking about how thankful I am for God's path for our life.  Who gets married at 19?  We were crazy... Or at least we were told that!  If we had waited just 2 more years, and did the more socially accepted thing for marriage and kids, we probably wouldn't have Jude.  Or I would be going through all of this pregnant.  I can't even imagine!  I now understand God's plan for why we met so young.  Although it wasn't always an easy path, I now could not be more thankful for it.

This may be funny, but I'm so serious when I say, I'm so thankful for hospital urinals!  (The little jugs that men can pee into)  I have no idea how Jonathan and I would have gotten through the last few weeks... He couldn't walk to the bathroom people!  And when he absolutely had to, it was a huge chore.

For as many bad things we see on the news each day about horrible things people are doing, I'm here to tell you that most people are good.  Our family are members at the Spokane Athletic Club.  Typically you say hi to people at the gym and go about your business.  We have had "strangers" quickly become friends.  People that hardly know us sign up to bring us dinner on hospital nights.  We got an invite to the Gonzaga basketball game. (Thank you Schrock Family)  I frequently have cards or small gifts left for me at the front desk.  I've been contacted by quite a few old friends from high school, just to volunteer in any way they can help.  (I haven't talked to some of these people in 10 years!)  Women from church leave me devotionals and new books, and I know so many of my sisters in Christ are praying for us still.  I had this HUGE fear that we would have lots of people offer to help in the beginning of this struggle, and thought quickly people would forget about us.  That has yet to happen!  I am so thankful to so many people for what you are doing for our family.

 

 

 Jonathan is super thankful that the pain in his leg is finally gone!  That's right, he is just about pain free.  It has been months, like since April, that he has not had pain in his leg.  When he does physical therapy it hurts a bit, but for the most part, his leg is on the mend.

I'm thankful for a young man by the name of Tucker Rudy.  Almost Every Wednesday for the last 2-3 months, when Tucker is out of school and Jude wakes up from his nap, Tucker comes and gets the boys.  He takes them to do some fun activity, brings them to tennis practice, often dinner, and then comes home and wrestles around on the floor with them.  One of Jonathan's hardest struggles with cancer has been everything he can't do with his boys anymore.  Tucker has been this huge blessing as a wonderful male role model in their life right now.  No one will or can replace Jonathan, but he has been a great substitute until Jonathan is back on his feet.  And honestly, what 21 year old kid comes and does that voluntarily and not because he is being paid?  Tuck you will never know how much that means to Jonathan, and the boys.

I have so many things that I could list off about being thankful for right now.  I just think it has been a great week to focus on all the good.

Jonathan checks back into the hospital on Tuesday December 2nd.  We will be in and out of the hospital for 3 weeks in a row of treatments.

Chemo Starts Again

FOOD SIGN UP  (There are quite a few open spots in December... Yeah, December is right around the corner, when did that happen?)  I want to thank everyone that has brought meals and who have signed up.  This honestly is a huge blessing to our family.  Thank You!

I want to start out with a few thank you messages this week.  I first want to thank my parents and Jonathan's mom.  They were able to help with the kids combined for over 1 months time.  I was able to be with Jonathan through his surgery and recovery, and I knew the kids were well taken care of.  Today at Jonathan's Dr. appointment we saw other patients who were couples, none at the age where they would have young children.  It made me wonder if this would be easier if we didn't have to juggle the kids along with everything else?  But as I sat their and played with Jude, who insisted he come because he wanted to see Dr. Raj, He put a smile on almost everyone's face in the waiting room.  I know the kids add a lot of stress to this already stressful situation, but for every stress they give, they also offer a smile, laugh or a wonderful snuggle.  I think our home would be much more somber and depressed if they weren't around.  Truthfully I couldn't imagine going through this without them now!  But I'm so grateful for all the help we are getting with them.

On Monday the 3rd, Jonathan and I headed back over to Seattle for a quick post op appointment.  It wasn't easy, but that was a start in the right direction for Jonathan.  He was out of the house!!!  We attended a gender reveal party for close friends.  We were able to get him across the street from the hotel and have a nice dinner.  It was a great date for the two of us.  The last time we attempted a date we ended up in the ER so we were grateful to have a nice night just the 2 of us. 

Overall Jonathan's appointment went really well.  They removed the drain tube from his leg, they removed all the stiches in his leg and the ton of stiches on his back as well.  The Doctor said Jonathan's leg looked really good.  He had more movement than most and the healing looked great.  They did a few post op x-rays.  I of coarse asked for the disk so I could check it out...

Then we reviewed the pathology results and had the statistics talk... I've actually really been struggling with this conversation.  Maybe that's why I've been avoiding a blog update.  The Oncologist in Seattle wasn't nearly as positive as our Oncologist here in Spokane.  I understand she was just giving black and white stats, where our oncologist here is trying to look for positives.  But here it is in black and white: 
~If the tumor death would have been in the 90% range, statistically reoccurrence happens in 30% of the patients.
~Jonathan's tumor measured at 65% death.  Statistically the reoccurrence rate now is at 50% assuming he can finish the 4 cycles remaining.  (We thought it was 3, but it is 4 totaling 5 more months of chemo)
~Because Jonathan got septic meningitis from the methotrexate, they said it is likely that will reoccur.  If it does reoccur and they are not able to manage it, they will have to stop that type of chemo.  If that happens, statistically when you can't finish the 4 cycles, the reoccurrence rate is higher than 50% I'm guessing like 70%. (I can't remember if she gave us an actual number on that)

Five Months ago we lived with the reality that we had what felt like a 100% chance of growing old together.  It's really hard to take that now, at the age of 30, you got a 50/50 shot at this.  It is amazing how much of your outlook and mood is effected so much by what the doctor says to you.  We knew we were hoping for 90% but Dr. Raj, our local oncologist, made us feel so much more positive.  But this time, On the drive home, I cried the entire way over the pass...  50% isn't high enough for me!  (You also have to remember that with this type of cancer you get no good news like "you're in remission".  You get scanned every 3 months to see if you have stage for 4 lung cancer yet.  They can't ever tell you if it is gone.)

I've read so much about how a positive attitude and outlook can really help you.  There are actual studies showing that if you can stay positive your immune system is higher, and you have a better shot at this.  So I really try to stay positive.  When I get down I feel like I have to actually say out loud to myself "OK you had your pity party, now screw your head on straight again."  But as we are faced with starting chemo all over again for twice as long, and these looming statistics, I'm finding it much harder to get my head on straight.  Jonathan seems like he is also more down than normal as well. 

I remembered early on in the process I went to a church sermon that was bout Gideon.  I shared the story briefly on the blog.  Gideon defeated 135,000 soldiers with 300.  If you put that into a percentage that is .2% of as many soldiers.  (I think... it has been a long time since I have taken math classes)  I keep telling myself the quote the pastor said, "Whatever the odds, trust Gods plan is better."  I wouldn't be being truthful if I didn't tell you my trust in this better plan wasn't being challenged right now.  I guess the truth is that I'm not doubting God is in control, and that he has a plan, I'm just beginning to question if my ending to this story is the same as his.  I do believe his plan is always better, I'm not just saying that, but I do know we don't always like his plans. 

Apparently this has gone to a gloomy place and not stayed on the positive side.  Sorry folks!  But I guess I wouldn't be being real if I didn't share how this process isn't always positive and it does wear on you.  But I promise, I will get my head screwed on straight here soon.  So here is something more positive.

Jonathan started his nasty round of chemo on Tuesday the 11th.  It definitely wasn't awesome, BUT he has been doing much better at home this time.  I requested at home IV care so he isn't dehydrated and passing out this time.  As the whole world knows I have my arsenal of non prescribed meds along side of his prescribed anti nausea meds, and Jonathan is doing far better this time.  He has actually eating 3 times a day!  Not a ton but something is better than before.  He still feels horrible, but I measure how he is doing by how he is eating.  And so the report would be much better!

Before we checked in on Tuesday, we made a point to have some fun family time just the 4 of us.  We went to see Big Hero Six at the movie theater.  (Jude snored through the second half)  We went to Disney on Ice. (Jax wanted to know when the Ninja Turtles were coming out... He was disappointed)  Jonathan and I went on a double date with the Rudy's.  My dad helped the boys hang Christmas lights.  (I think we listened to Jax sing jingle bells on repeat for 4 hours straight)  And overall enjoyed ourselves the best we knew how.

 

Jonathan will have a 2 week break to recover from this type of chemo.  He will spend a bit of this time neutropenic.  So Please pray he does well and we don't end up back in the hospital.  We hope to have a normal Thanksgiving!

And just as a reminder, 50% is a heck of a lot better than .2%.  God answers prayers.  And I've said this so many times before Jonathan was even diagnosed.  I think he has always been a top 1% type of guy.  If you know him, you'll agree.  So even though we get down, Jonathan's got this!

Thank you again for keeping us in your prayers.

Our Silent Struggle (The topic of Marijuana and Cancer)

I'm finally getting up enough courage to write a post about a topic that has been heavy on our hearts since Jonathan's diagnosis.  I've debated for 3 months now about writing this or not because it is such a political and heated topic that everyone seems to have an opinion about.  The intention of my blog has simply been to share our story with family and friends, to offer encouragement to others, and possibly get encouragement when we need it.  I really don't want to open a door that allows debate and criticism, but I know that's just what happens with stuff like this.  Why I enjoying writing the blog, is because I can be raw, honest, and tell people the truth about what fighting cancer is really like.  I feel today if I don't talk about this, I'm not disclosing part of our story that I feel like needs to be shared.

Most of you reading this know quite a bit about me and Jonathan by now.  For those of you who don't, if you asked me to describe myself, I guess I would tell you I'm a hard working Christian girl that would land on the conservative side more often than not, on many topics such as this.  I'm 29 years old and have never tried marijuana.  Until recently if someone around me was smoking it, I would probably begin to look for a skunk in the area.  Although Jonathan was probably far less naïve to the subject, he would make the same claim.  This is simply our story about our experience down this road of medical marijuana, and it is a frustrating story to say the least.

In July when we receive Jonathan's diagnosis of a very serious form of cancer we had 1,000 questions as you could imagine.  When we had our very first meeting with our original oncologist one of our questions was "How do you recommend using medical marijuana along side chemotherapy?"  The response was "I don't recommend introducing another poison into your system."  In other words, he doesn't recommend we use medical marijuana at all, and we moved on to the next question. 

As we began to share our story through this blog, we had numerous people reach out to us and recommend us look further into the topic of medical marijuana.  One person even slipped us a joint!  To be honest, I thought about just throwing it away, but then again Jonathan was already in quite a bit of pain and he hadn't even started chemo treatment yet.  It is legal now in Washington, so I just put it away in a hiding place for a possible rainy day. 

Then Jonathan had his first dose of the liquid anti Christ doctors call Cisplatin.  He was so sick... I was overdosing him by double the recommended amount of the 1 anti nausea meds they had given us.  He was basically comatose from nausea, and just the thought of applesauce would push him over the edge.  As Jonathan's wife I was just sick from seeing him suffer like this.  He had lost 6 pounds in just days and so for me, it was finally a rainy day!  I told Jonathan's mother, who is a chemical dependency counselor about the joint I had hidden away.  I think I was looking for her to confirm that it is a bad idea and I should not encourage Jonathan to try it.  But as his mother, I think she was suffering right beside me.  She looked at me and said I think we should have him try it!  I actually began to laugh and confessed to her that we had no idea how to smoke a joint.  I find humor in the fact that a biblical based chemical dependency counselor was getting use of her time spent in the 70's and was now explaining to her son how to properly smoke pot.  But the reality is, when it's your family, we were desperate for something to help him. 

After about 5 minutes from taking a couple hits, Jonathan was sitting upright.  This had not been the case in 3 days.  He then began to joke around with the kids and shortly after that turned to me and asked for a bowl of cheerios.  He ate an entire bowl of cheerios, and a whole thing of yogurt.  After about an hour, he made his way back upstairs, and returned to his coma of nausea and pain.  What I witnessed in Jonathan at that moment put me on a mission.  I needed to get informed about medical marijuana!  Once again I had quite a few questions racing through my mind that I needed to get answers to.  I think most people in our position probably wonder about this same stuff... that is why I'm sharing. 

My very first question was why did our doctor tell us this was a bad idea?  It was like a miracle, it worked so well.  What does he know that we don't?  Of coarse after him telling us we don't want to put any more "poison" in his body I was worried to tell him I had Jonathan try it.  So instead of telling him the truth about what happened I asked further about the marijuana.  He said it is something only really used for end of life patients to help cope and manage because their is no point in not adding more toxins anyway.  But my research found something so much different.  What I found was this:  Marijuana is classified as a schedule 1 drug federally, same as heroin and LSD.  This means that the government views this drug as having no medical benefits to offer and are highly addictive.  Cocaine and Meth are considered schedule 2 and more safe.  (just think about that for a second...)  There are 20,000 medical journals written on the topic of marijuana, the only problem for a cancer patient is that 90% of those articles are written with the purpose to explain why it is bad for us.  It is very difficult to find medical journals written with the intent to find its benefits.  However in a brief entry level search there are claims of people using it for Epilepsy, Tourette's, MS, ALS, Loupus, Crohns, PTSD, cancer and the list went on and on.   So my conclusion to this question didn't stop at the doctor's answer.  The answer that I came to is that it is federally illegal.  Any doctor that values his medical license isn't going to risk going into this gray area that has very little medical research done to support the use of it with a patient.  They don't actually know what effects it has while taken with chemo, they don't know about dosages, they don't know a lot.  There are so many questions yet to be answered with actual medical research that it puts them at risk, not to mention it is federally illegal to use anyway.  So of coarse that is the doctors answer. 

Which brought me to my next question... Ok, so why is it a schedule 1 drug and federally illegal?  So began my search of the history of cannabis...  Did you know that our declaration of independence was actually written on cannabis paper?  Turns out, years ago, prior to the 1930's cannabis was the cash crop.  Not mainly used for recreation drug use, but for everything under the sun.  Henry Ford used it in one of his first cars for the metal body.  The guy that invented the diesel engine first invented an engine that ran on cannabis oil.  It was being used to make things like shoes, ropes, paper, fuel, medicine, etc.  Then a guy by the name of William Randolph Hursh came into the picture.  He was invested in the news papers, and their printing presses that would print on wood paper.  It was the industrial revolution and a machine was just created that made harvesting cannabis and turning it into paper much easier.  Mr. Hursh's big investment was now a bad one!  So he had the money and the means to write a story about this new drug called marijuana.  He published a story about how black and Mexican men were smoking this crazy drug and causing them to rape and kill white women.  Mr. Rockefeller who at the time was well invested in Oil (gasoline) jumped on this propaganda.  By the 1930s they had a bill in front of congress to make this horrible drug called marijuana illegal.  It passed, but what was not clear in this bill was that marijuana and cannabis were the same thing.  If congress would have known they were making cannabis illegal, it is believed this bill would have never passed.  The first ten dollar bill in print was a display of the wonderful crop of cannabis, why would congress now vote to eliminate it?  Were they tricked or possibly persuaded by money? 

I instantly called in for help.  I have a few medical resources who I asked to go on the hunt for medical journals.  Anything that they could find that would tell us what additional risks that using this drug would have on a person that was undergoing chemotherapy.  Would it counteract his current prescribed medications? What are the risks that would be any higher than taking an oxycodone or Ativan?  I was discouraged when there was very little they could find on the subject.  But we do know that over 100 people overdose on prescribed medication every hour.  We could not find 1 case of an overdose from marijuana.  In fact I found a study where scientists tried to kill a monkey on overdose of marijuana and were unsuccessful.  Basically the risks were similar to that of many of the current drugs already being prescribed and in many cases not as bad.

I received a name of a girl that ran a medical marijuana dispenser place here in Spokane.  I was told she was very knowledgeable.  So I called her... She was very nice and she did know quite a lot about Marijuana. dosages for different ailments etc.  I was very nervous by how little she knew about chemotherapy.  I asked her what qualified her to help dose patients, Her answer was basically "I for many years have pursued my passion."  The struggle we felt is that although very nice and knowledgeable she isn't an MD... she has really no medical training.  So now I'm trusting what she tells me over my doctor?  What she did do, was forward me onto various medical studies that have been done.  (Because marijuana is federally illegal, there are very few)

There is a Dr. Nogarkatti out of the University of South Carolina that has been researching cannabinoids and how they interact with the CB2 receptor.  I don't need to explain the boring details that I looked into in depth, but basically the study showed that in 25%-30% of mice were completely cured from cancerous tumors by being treated with the cannabinoids which I think is the CBD compound of the plant.  It targeted only the cancer cells and did not harm the healthy cells as chemo does.  There are also studies being done in Spain with mice that are also showing the same results.  If the mice weren't totally cured, almost all of them had a significant decrease in the tumor size. 

After weighing the risks, Jonathan and I made an appointment to get his medical marijuana card.  As soon as he was feeling well enough to leave the house after his first round of chemo we made our way down to a some what shady hole in the wall place that had a peculiar smell.  I remember sitting in the waiting room listening to a gentleman that was purchasing his license who asked the employee "now that I have this, my ex wife can't pursue me in court for custody because I posses marijuana right?"  Then the nurse called us back.  She took Jonathan's heart rate and was doing typical nurse stuff, but while doing this, she was smoking on a vaporizer... what I can only assume was marijuana.  I kept thinking to myself "what are we doing?"  Then we met the doctor!  As I sat there and questioned myself on this decision, this doctor eased my mind.  As she looked at Jonathan, she could see how he was suffering.  She looked him in the eye and told him she has never smoked marijuana in her life, and she gets so much criticism for what she is doing, but for the 1 patient each day that comes in like him with cancer, that is why she is here.  She said "this will help you!"  She asked all kinds of questions about types of chemotherapy, meds he was on etc.  She began to write out natural path medication that she would recommend.  Unlike the other patients before us, she walked Jonathan out to the front and told the girls his license was No Charge.  I had regained faith in our decision.

When I went to the dispenser place, the girl helped me with recommended dosages of the CBD in the marijuana.  Jonathan would be taking very little amounts of the THC which is what actually gives you the high, not what studies are showing to actually help the cancer, but will help with other symptoms.  Because we still feel uncomfortable with the variety of research of actually smoking marijuana, we are opting for him to take it in pills.  So here is this One drug that now is going to help Jonathan with his nausea, He has 3 prescriptions for that purpose.  This same drug is helping him with his appetite, they don't have any prescriptions for that besides Marinol which is the synthetic form of the same thing.  This same drug is also helping him with his pain which he has 3 prescriptions for and additional over the counter meds as well.  It helps with anxiety and insomnia, Jon has 2 separate scripts for that.  So if prescribed by a doctor and given actual dosages of the right compounds of Marijuana, could this replace 6-9 prescription meds?  Why are pharmaceutical companies not all over this?  So of coarse I researched it!

Marijuana is a multimolecular plant.  You can't patent it!  It has 421 chemical compounds, 60 of those are cannabinoids.  Pharmaceutical companies are never going to pay for research done on something that they can't patent and make money from.  The only attempt they have made is with Marinol which is a synthetic form of the THC found in marijuana.  This is how doctors and pharmaceutical companies are getting around the schedule 1 drug issue.  If you choose to take Marinol for symptoms from chemotherapy, you are eliminating any possible benefit from the CBD or cannabinoid compounds though.

So what is the point in this long blog?  If you think I'm simply jumping on the legalizing marijuana band wagon, you've NOT felt my struggle.  If you are suffering with something, do your due diligence, get informed about all the types/species of medical marijuana.  Before you just bake it in a brownie, or roll it in a joint, be as well informed as you can.  Today I help my husband dose himself with a medication we don't really know how to dose or use properly with other medication, but not from lack of effort.  What we do know, is that is helps.  It helps so much more than all of these other prescriptions.  So we guess.  We lower doctor recommend dosages of this and that and guess what amount of the marijuana will parallel!  I do know Jonathan handled his subsequent rounds of chemo far better than the first.  We are so frustrated by this process. 

The point in this is an outcry for people to really understand what this is like.  Maybe if something comes across a ballet somewhere you will be more informed on how this really goes for a patient.  We need to bridge this gap between "natural" medicine and "modern" medicine.  Why can't we work together?  Why does this have to feel like we are doing something wrong?  Why won't the government recognize that this is a medication and it does actually work?  Then maybe we can make some headway on research so people like us aren't making this decision to guess dosages.  We need to make some MAJOR changes here!

For so many years on this subject I would admit I was pretty uninformed.  But to be honest, I didn't use the stuff and it didn't effect me at all... So why did I really care.  It reminded me of a quote that I read in a book last year.  In the words of Holocaust survivor Elie Wiesel, "Neutrality helps the oppressor, never the victim."  When I read it I promised myself, that never again will I sit on the sideline and remain neutral.  Today I'm speaking out on behalf of my husband, and I have every intention to let my voice be heard on this subject far beyond this blog.

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!

FOOD SIGN UP
DONATIONS

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!