Saturday, January 24, 2015

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!

Tuesday, January 13, 2015

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.

Thursday, January 1, 2015

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