Cancer Cant

Jonathan and I have some exciting news this week!  Over the last couple weeks Jonathan and I have decided to focus our efforts on something positive.  We have found it is so much easier to forget about what currently stinks in our life while we are so focused on doing something to make someone else have a little bit better circumstance. 

We are proud to announce we are launching our own non profit!  Cancer Cant
       Website: www.cancercant.info
       Facebook: www.facebook.com/cancercant.info   (Please Like our page)
       Twitter name: @cancercant_info  (Please follow us)

It has been heavy on Jonathan's heart to do something about updating the oncology floor to make it more comfortable for patients staying there.  As of today, Jonathan has spent more than 70 days in a hospital room.  Some patients going through stem cell transplants can be in a hospital room for upwards of 50 consecutive days.  Now imagine having basically no comforts of home.  Hospital food constantly, because you have no refrigerator to keep take out or a home cooked meal cold.  And then no way to warm it up.  One of the more experienced nurses told him the oncology floor has not been updated/painted in over 20 years at Sacred Heart.  So we have contacted Sacred heart and have begun the process to work with the directors to begin forming a budget and timeframe to help Jonathan's dream come true.

If you are interested in donating, volunteering, attending, whatever, please fill out the appropriate form on the website.  This is going to be a huge project for us, but we are excited to see what we can make of it.  We have 2-1/2 more months of considerable time in a hospital room, so we should be able to accomplish a lot!

Last update I sent out, we were waiting on biopsy results for some additional skin spots removed from Jonathan's back.  Unfortunately he is going to have to have another minor surgery to remove 2 of the 4 spots.  The good news is, the 2 spots requiring surgery are not full blown melanoma this time.  They are however considered "severe A typical" and as I understand it, the stage just before it turns into cancer.  So they basically treat it the same as a stage 1 spot.  He will be having his little procedure mid march.

This week was a new adventure for Jonathan as he did not have to get what we call the "antichrist" of chemo.  Typically he got that chemo simultaneously with a chemo by the name of "red devil".  (We were informed of this nick name by a hospital roommate recently)  So on Tuesday and Wednesday this week he got his regular dosage of the "red devil" and he handled it like a champ!  The doctor let him out early on Wednesday so that was one less night in the hospital!  On Thursday morning he went to physical therapy and picked Jax up from school.  He seemed to feel really pretty good, but quickly got tired.  He slept most of the rest of that day, and we started some minor anti nausea drugs, but overall he is doing great so far.  We are expecting him to still become neutropenic next week, so this won't be a walk in the park.  But so far it is going really well considering. 

26 treatments down, with over 70 days in the hospital.  6 more treatments to go, and about 22 days in the hospital... assuming an infection doesn't land us there!

Now we have 2 weeks at home!  We are excited to spend time with the kids and just relax.  Oh and how about those Seahawks?  Jonathan was screaming at the TV... more than usual last Sunday.  I was afraid he was going to blow out his knee from attempting to jump up and down!  He is very excited for the super bowl. 

Jonathan and I found God challenging us after listening to pastor Joe's sermon on using your gifts to serve others.  Joe said "If we are so focused on what we can't do, we will miss out on all the things we CAN DO."  Life, our life was given to us by God, and was paid for at a price.  We've had the opportunity, yes opportunity, to learn how short it can be.  Someday each one of us is going to stand before God and have to answer for what we've done with our life and the gifts that he gave us.  Like the parable in Mathew 25, God expects a return on his investment.  Matthew 10:42 "And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward."  So we decided to move forward with Cancer Cant in hope to one day hear "well done, my good and faithful servants."

Cancer Cant, But we Can!

Starting to Feel Like Normal

I know everyone enjoyed hearing from Jonathan last blog.  I've found this blog to be so theraputic for me to write down all of our struggles as well as our victories.  I'm glad he finally chose to try this as an outlet for him.

But Jonathan didn't really give you an update on how things are going.  So I'll get to work and fill you in on our the details.

After Jonathan finished his rough round of chemo right before Christmas, we headed to the doctor's office to try another type of antinausea that we haven't tried yet.  They did an infusion of Aloxi.  This is a slow release antinausea that actually ended up working really well for him.  He was able to eat and drink actually pretty normally, which was huge for him after the cisplatin.  So I didn't have to run as much IV fluids for him, or dose him with as much other antinausea drugs.  Overall he did really well.  He was able to participate at Christmas some, he ate Christmas dinner and I think even had a cinnamon roll or two for breakfast.

Shortly after Christmas, we made what feels now like our usual trip to the ER when Jonathan is neutripenic.  For the first time in my life I'm a little hesitant to explain in detail Jonathan's situation, so out of respect for his privacy I'll vaguely explain.  When he becomes neutripenic, he has nearly no white or red blood cells, and very low platelets.  This causes him to get constant bloody noses because his blood won't clot.  He becomes extremely fatigued because he has nothing to distribute oxygen around in his body making just getting to the bathroom a cardio work out.  Also he struggles with really bad mouth sores.  You take a high bacteria filled area in your body and no cells to fight the bacteria and you get sores.  So consider another place in your body that comes into cotact with lots of bacteria...This area has now also developed sores. This became a very painful thing for Jonathan and possibly what caused the infection this time.  This issue still isn't even resolved as Jonathan is still struggling with pain during his personal reading time in the restroom.

After Jonathan was released from the hospital we had a few days at home before we headed over to Seatlle for a visit with his surgeon.  It was a great trip.  We had a nice dinner with friends over on that side of the state.  The drive wasn't too bad, and the dr. visit went well.  They released him to bear full weight on his leg.  Since that day, our lives have been liberated!  It was so restricting for him to constantly have a crutch.  He couldn't carry things with no hands... Now, he is helping with the dishes, making sandwiches for the kids, making his own snacks and even putting away laundry!  And when we play hide and seek, he doesn't have to try to hide his walker.  He doesn't have pain in his leg anymore either.  We can at times forget he has cancer... life almost feels normal again when the 4 of us are home.

This month we finally got our disability check in the mail.  After threatening them that I hired an attorney, we finally got that situation under control.  We once again want to thank everyone that has helped us financially throug this journey.  With your help we were able to make it 5 months on our savings and your donations.  I was starting to worry we were going to have to pull from IRAs etc. to pay COBRA but it has all worked out.  AND now that we have an income we were able to hire a nanny for the kids while I'm at the hospital with Jonathan.  While we have been beyond grateful to our family for all the help, It hopefully will be a more consistent schedule for the kids to just have 1 person.  She is helping some with cooking dinner, shopping and cleaning.  We are so grateful to have Kirsten helping make things seem a little more normal for all 4 of us.

We are back in the hospital today for week 2 of our 3 week go at chemo.  So far things are going well.  Jonathan is eating good, gaining weight, and his sense of humore is back!  He is struggling a bit with high blood pressure and a higher heart rate, but hopefully as we finish these last few months of chemo that will resolve.  But basically his resting heart rate has almost doubled since this started... I thought he burned calories before, holy cow!

We also went back in to have another check of his skin.  We had 4 more spots removed and are waiting on biopsy results on those.  Hopefully they won't be melenoma and require surgery... But I'm not going to hold my breath on that.   I posted this photo on facebook and mentioned Jon is going to be the cool dad that has to wear a shirt now at the beach constantly.  These scars resemble that of frankenstein... Jon is proud of them though.  He has decided to tell people he was in a knife fight in jail or something.

We were hoping to attempt one of his next chemo rounds as an out patient, but the pharmacist told us no to that one.  It is too high of a dose.  So next week we will be doing his first round of just Doxi.  We are hoping that it is way easier than when they give it to him with the antichrist chemo.  It will still make him neutripenic though.  So we shall see how it all goes....

I've been working on a study in 1st Peter.  The point of the bible study is to try to find encouragement in troubling times.  Anyway, Ever heard the expression, God works in mysterious ways?  Today he revealed something to me while Jonathan and I were watching Pawn Wars.  Now that's pretty darn mysterious... (Jonathan watches a lot of TV) and this show is by far hitting our low point!  (insert chuckle)  So I was spending some time answering some questions on 1 peter chapter 1 in my study book earlier that day.  In verse 7 Peter compared our faith to precious gold.  Then he used an analogy about our faith being tested by fire.  At the time I was going through my study my thoughts were about how cancer is our fire, and how this is testing us.  But as I watched this Pawn guy melt the gold with his blow torch to test if it was real, I got this "oh my gosh" moment.  Peter isn't just talking about how cancer is my fire, he was talking about fire changing the form of the gold! 

When horrible things happen, I think it is inevitable to ask WHY?  I think this question must be the biggest questions in any faith.  I mean is God like this big puppet master in the sky who picks the ones that get cancer, or gets divorced, or allows children to be abused?  And surely that isn't how this works, but since I know with 100% certainty that with a short breathe he can take all of it away in an instant.  So why doesn't he?  I'm sure there are pastors or theologians that may have answers to this, but for me, I'm done asking why.  Knowing why doesn't change the fact it's happening!   I think we need to move on to the next question, "what am I going to do about it?"  So I know that I am more precious than gold, and yes my fire is that my husband has cancer.  So right now I'm being melted, or maybe reshaped is a better way to put it.  I've watched so many other people be shaped by their fire; Abuse, A child with a brain tumor, Divorce, Illness, Death... the list could go on forever.  It seems like the outcome for how it changes people is different every time.  I've seen anger, bitterness, mistrust, sadness, depression but I've also seen grace, unwavering faith, pure Joy and kindness.  No matter what, these horrible things are going to change us.  And I think God gives us free will, and we get a say in how we change or reshape ourselves.  Because in the end, even if we choose to be angry or sad, we are still more precious than gold in God's eyes.  But lets be honest, who wants to be angry or sad?  I want to come out of this with Joy like I've never experienced.  I'm actually looking forward to a mairrage post cancer... we've been through hell together, and now will have a connection most people will never get to experience.

1 Peter 1:8-9  And though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.

Jonathan's story

I know most of you have been reading the blog Becky has written.  And she has done an amazing job, much better than I would have done.  But being half way thru this now I was reflecting and wanted to put some of the story in my own words.  Some of this may be redundant but hopefully it gives everyone, myself included a perspective from the patient, the dad, the husband, son, brother...

 It all started with the “I'm too young for this feeling...” But not toward cancer, just toward a simple knee pain.  Fast forward a month and I was told it is probably a tumor in your femur and is most likely cancer.  Whoa!  Now I felt I am way too young for this. 

 At this time we didn't know a lot but we knew this cancer was bad.  The fear was high but we had to keep living until the docs could tell us more.  That weekend I played in one of my favorite golf tournaments with one of my closest friends Trevor Shoemaker.  My leg hurt the entire time which was a constant reminder of what was to come.  We had a blast and if I wouldn't have lost 5 golf balls in 2 holes and Shoe finishing the round of his life making 4 doubles we could have won!  Next year it's ours we said.  But that damn cancer would creep back into my head, will there be a next year, will I have a leg then, will I be around then?   This was the first real thought of mortality creeping in. 

 July was here and all the test and biopsies are done.  It was confirmed cancer, and not an easy one.  Now those thoughts were harder to suppress.  I was afraid I wouldn't be able to take my boys to their first Seahawks game.  I went every year with my dad and it's one of those great memories you have, even though it was the 90's Hawks with Rick Meyer at quarterback.  I was a Cowboys fan back then!

 I was afraid I wouldn't be able to take Becky to Europe like we always talked about.  Our 10 year anniversary was a month away and that was the plan.  Another what if we don't get to...

 The rest of July was filled with doc appointments but we snuck some fun in there at the lake and outside with the boys. Watching both boys jump off a dock for the first time was therapeutic and a reminder that good things are yet to come.

 August and chemo time...  No idea what to expect.  The nurses seem great, fun and can joke around but the answer to any medical or expectation questions was always "everyone's different".  So the first dose of chemo comes in late that night.  The nurses are practically wearing hazmat suited to handle this little bag.  2 nurses have to read every letter of your name, then your name badge, then your medical bag and still have the audacity to ask me to confirm my date of birth.  What the hell is in there I'm thinking.  The chemo started running and it is bright red in color coming down your line which happens to be surgically inserted in my chest directly accessing my heart.  Slowly the bright red fluid gets closer and I'm wondering if I am going to get hot, cold, nauseated, numb, maybe turn into the Incredible Hulk, but all I know is "everyone's different", perfect...  15 min later the chemo is done and we are ready for the next bag.  And we went thru the whole hazmat suit, name number routine again, even though no one left the room.  I couldn't help but chuckle and point out the redundancy.  Oh well, their rules not mine. 

 Few days later I have the first 4 rounds in me and am home.  Nausea was bad, or so we thought.  A few days of no eating and being extremely tired would turn out to be easy compared to what was to come with later treatments.  After getting thru that round and feeling better in less than a week I started to have some hope.  I can do this.  I can make it thru 8 months. 

 We had a great 10 year vow renewal ceremony with great friends.  But that thought of mortality would creep back in.  Is this a vow renewal for our last anniversary...  Grimm thoughts I know but it was thoughts you can't stop.  I have a strong enough faith to know God can heal at any minute but I also have a realistic understanding that God's ultimate plan isn't always to heal.  Too many people don't beat cancer.  Don't get to their next anniversary, football game, birthday etc...  I wasn't mad at God about this, but scared.

 A few days after the great anniversary party and the thought of we can do this for 8 months comes, "oh this is awful get me to the doctor now".  Again no experience and not much warning I became neutropenic meaning I had no white blood cells and low platelets.  The constant sinus draining and bleeding became a full double ear infection and sinus infection.  The biopsy site which was healed split open with an infection and I ended back in the hospital for a few days.  Now the 8 months if this happens every time seemed a lot longer.  Hope and strength were falling.

 The rest of the chemo in Aug and sept went as expected with awful side affects but getting one down felt good each time.  But it was now that the horrible disease started to take away from me, from our family.  I wasn't a banker any more, I wasn't at work in the social setting that energizes me.  I was playing 9 holes of golf 1 time a month.  I could only play with the boys for short periods before my leg was hurting.  I couldn't get to church if my blood counts or health wasn't there.  I couldn't help as much around the house.  I couldn't sit with Becky on the couch from the leg pain.  At this point cancer was winning and I was letting it. 

 The last round a chemo before surgery was late September.  Easy round, excited to be done for a little while and get the surgery done.  Only one problem... A few days after, it gave me meningitis.  Absolute worst feeling ever, I think Becky’s blog has already gone into this but that's not one I ever want to go thru again! 

 So far we think the surgery was a success.  Only time will tell this.  After surgery I was off chemo and home for 6 weeks.  My spirits were up.  My body was recovering, hair was even growing. I was bed ridden for most of that time but the boys could come in and visit me.  I was healthy, able to see people.  I finally felt decent again. 

 That was a great recovery month for me.  November then came around and chemo was back on...  The first round was the antichrist of chemo known as cysplatnum.  I was sick and depressed before even getting to the hospital.  This was the last thing I wanted to do and was not mentally prepared for it at all.  Becky, the nurses, the doc could all tell I had changed.  I had mentally given up the fight to cancer this round.  The nausea at home was worse than ever.  I can truly say this is the lowest I had been.  I wasn't ready to give up the fight but I can say I wasn't far from it.  Becky knows I would keep fighting as long as I can but in that moment I didn't know it myself. 

 After these tough conversations and thoughts came a choice.  I can continue to feel this way until treatment is over and let cancer win or I can change.  I asked to doctor about anti-depressants which was not a good option for me.  But simpler than that, I can choose to not let cancer take everything it has.  I can start taking back. 

 Since that depth I have gotten back in the gym as often as I can.  Workout at home, nothing like some oxygen flowing to help your mood a little.  I try and play hide and seek with the boys when I am home.  They have an unfair advantage since I have to hide myself and a walker but it is still fun.  We have had a few small parties at home to get people around.  I may not feel the best all the time but I can choose to fight thru it and not let cancer be a part of it. 

 Soon I will be able to start walking and driving again, another milestone to take back from cancer.  The chemo schedule will get a little easier and more time will be freed up for more non cancer involving activity. 

 So what's next for me?  I have a friendly bet/challenge with a friend to get my weight and strength back.  I have lost around 30 pounds total, far more than I had to lose.  But my goal will be to get back to that by April.  A hard challenge but one I am ready for.  Also will be working very hard on getting my golf game back in shape.  This is one of my few sports I get to continue.

 

I want to start raising money for the cancer floor.  Becky and I have talked about this since we got up here on this floor.  It's a shame that the rooms for people who are here for so long and are so sick and lonely are so bland, dreary and uninviting.  The birth suites have all kinds of amenities with fridges and microwaves, color and they stay is a night or two.  Some of the people I have met are here for a month or more for their treatment.  All without the comfort of even keeping your own food chilled.  Or having a curtain in your room that is less than 10 years old and large enough to cover the gap.  I don't know how much we need to raise but this will be one of our family’s goals for a long time. 

 I know Becky has put it in blogs but I have to thank all the friends, family and some perfect strangers who have stepped up in big ways.  We have gotten help from people we didn't even know 3 months ago.  Food, cash donations, and child care help, the list goes on.  I don't know many of you but our family is forever grateful for your sacrifices. 

 Last I want to make a special shout out to my amazing wife.  She has taken over every role in the home as well as becoming a full time care taker to me.  She is my rock, my strength and the person that keeps me going. 

 I still don't know what the end of this journey brings.  God’s plan is unknown to us, but I know I can choose to live my life and not let cancer dictate it to me.  God knows his plan for us and as we know he is bigger than any statistics and any disease.  Having peace in that is comforting but challenging.  Faith like my 4 year old is what we need every day.  When you talk to Jax, It's always when your leg is better and when your hair is back, not if, not I hope, but when. 

I found a quote that I find encouraging that I want to share: Cancer is so limited....It cannot cripple love. It cannot shatter hope. It cannot corrode faith. It cannot eat away peace. It cannot destroy confidence. It cannot kill friendship. It cannot shut out memories. It cannot silence courage. It cannot reduce eternal life. It cannot quench the Spirit. Author Unknown

 

Thank you all for following my story and for your continued prayers and support.

Jonathan

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.