Round 2

Last time I wrote a blog I was letting everyone know Jonathan’s scan was clear.  We were off to celebrate and make up for time lost by traveling with the kids.  We went to the Oregon coast, then off to Hawaii.  We’ve taken the kids golfing and are at the pool playing and enjoying every moment of summer together as a family.  We have truly had a wonderful 3 months!  But sadly, 3 months is all we will be getting…

On our drive home from the Oregon coast, Jonathan started to get pretty uncomfortable sitting in the car.  His hips were hurting and it slowly has gotten worse.  In fact, he can’t even ride in my car now, sitting in that particular position is excruciating to him.  So when we went in for his 3 month scan in June, we were pretty nervous.  I think we would be less nervous if he wasn’t having pain anywhere.  We got the news that his scans were clear.  That tiny spot that once showed up on his very first PET scan a year ago was back again, but such a small absorption rate that it is nothing.  (Just like the first time we explored it)  But since he was having pain and it isn’t cancer, we need to figure out what is going on.  So the Dr. ordered an MRI of his pelvis/hip looking for meniscus issues or maybe a stress fracture from walking on that one leg only for the last year. 

So about a month later… this last Thursday, Jonathan went in for his MRI.  Upon leaving the MRI, he asked for his disk of images so we could look at them at home.  The computer kept freezing so the receptionist asked if he could come back on Friday.  So he did… Then he took the kids to swimming lessons.  Jax got stung by a bee of course that day.  So instead of playing golf after swimming, they went right home so Jax could relax and watch a movie.  I decided to go out for a pedicure with a friend and get some work done for the non-profit while the boys were supposed to be golfing.  So once Jonathan got the boys settled on the couch watching their movie, he plugged the disc into the computer to see if he could see anything… Unfortunately, what he saw is horrifying.

It looks like a giant white spot on the left groin area of his pelvis… the same looking white spot that was on his leg.  He immediately called the oncology office to ask if they have looked at the scans.  The Dr. pulled them up and confirmed what he was looking at wasn’t good.  He said he will need to have a surgery to biopsy it to confirm what we think it is, and get another PET scan. 

Jonathan then calmly called me and told me Jax got stung and I should probably just come home.  So I did… As I walked into the house, the boys are quietly watching a movie and I turn to see Jonathan sitting on our chair in the office.  He has tears rolling down his face and I can see his feet tapping anxiously.  He looked at me and I knew!  I dropped everything I had in my hands to the floor and started screaming there was a spot wasn’t there?  At first I was angry… How could they have missed this just a month ago it was clear!?  Then I wanted to see the scans myself… to my horror it was just as big as the last one!  Well the only problem is, it doesn’t matter at all how big it is, anything, any tiny spot means the chemo didn’t work.  The only way they know how to treat Osteosarcoma, DIDN’T WORK! 

By this time I had fallen to the floor sobbing, we both were… I can’t tell you how long I sat there crying probably harder, no like way harder, then I cried 1 year ago.  At one point I don’t think I was breathing and then my face and arms started going numb.  That was all I could get out to Jonathan as he tries to decide if he should be taking me to the hospital for a change.  As his concern moved to my wellbeing, I think some sort of brain function returned and I started telling myself out loud “Breathe, you have to Breathe.”

Once I was coherent, the questions started coming.  Word for word what did the Dr say?  OK so we need a biopsy, give me the phone, I’m called Chappie NOW!  Somehow Dr. Chappie answered his phone, and I told him what was happening.  He told me his surgeries are on Thursday and he will try to fit him in.  Call at 8am Monday morning and we will get it figured out!  Then he asked if there was anything on his lungs… and in my frustration I said 1 month ago there wasn’t anything on his pelvis, so I have no flipping clue if this is to his lungs yet.  It grew to the size of a golf ball in a month!  He says, well if it isn’t in his lungs yet, that’s some sort of good news… Call me first thing Monday.  And we hung up. 

Next Surgeon, there is the local one here in Spokane, Dr. Howlett.  Chappie trained him and well he caught this entire mess in the first place.  Lets call him… So we got an appointment on Tuesday.  Not sure it makes much of a difference who does the biopsy, and if a day or 2 matter in the time frame.  Ultimately we know what it is… but they will want the biopsy to begin genetic testing on. 

I began to call family, as Jonathan sat on the computer researching.  I didn’t have to research… I knew the odds were now very much not in our favor.  I knew the 2 oncologist both answered my question totally different when I asked “do you have a plan if this comes back?”  And the answer is, they don’t know what to do, and are each guessing.  There is no standard of treatment anymore.  One proposed a different types of chemo that shows maybe some promise.  (AKA buy more time, time that we know is sick and miserable.  AND pray for a miracle.)  The other suggested medical trials.  No statistical proof of anything, a long shot!   Now, we have no good options!

Jonathan found a T Cell trial at Duke and Penn State.  So we will see what the doctors tell us, and if we need to pick up and move to North Carolina.  But here is what Jonathan told me.  He isn’t quitting!  He has way too much to live for, and hey, his odds are better than Sean’s.  (The speaker we have coming to the dinner and auction)  So his positive spirit is in there… it is just really hard to be positive YET!  I know we will formulate a plan and we will go at this all over again, but it is hard to be positive when you are so devastated at the same time.

So we put on a happy face, let Jax have his friend come spend the night, then packed a swim suite, tooth brush and pajamas and hit the road for Priest Lake first thing the next morning.  We promised the kids daddy would take them to the lake, they love it here (so do we), and how in the world were we going to tell them?  So tonight we sat down around the table for dinner and Jonathan told them that daddy thinks the bad guys are back.  Jax got mad sort of and was immediately frustrated.  I told him I was really sad and it was ok for him to be sad.  So he then started crying, but just for a minute before he reminded us that the bad guys don’t like it if we are happy.  So we need to try to be happy!  Jude kind of seemed confused, and just sat there quite.  He then started asking questions, Does this mean we have to go to the hospital all the time AGAIN?  Is daddy going to be sick AGAIN?  Jax asked if we are moving to Florida… So we did tell them we very likely will have to move.  So they are working on processing this and are trying to be brave.  As brave as any 3 & 5 year old could be!

We spent the weekend hiding from world and making the most of the time we all have together.  Jax caught a fish off the dock, the boys got Jonathan on the tube for a nice little ride and we tried to enjoy our most favorite place the best we could.  We even mustered up the courage to travel across the lake to have a drink with some friends.  We both know from last time it is better to crawl out of your hole and face people.  Allow yourself to be encouraged, but it just takes every ounce you have to try to be normal for a minute.  But once we can do that, it does feel better…

 

So as we prepare to head out the door for church, I’m once again going to ask for prayer.  We are virtually living a nightmare right now.  Maybe by some miracle this spot isn’t what we think it is.  But I will update the blog again when we know more later this week. 

Life After Chemo

 

I know it has been awhile since Becky or I have updated everyone on how we are doing.  The truth is we have barely been home to provide an update.  I may have over compensated for being stuck in a hospital room for the last 9 months!  A few weekend trips, Portland, Oregon Coast, Ephrata and the most fun was Hawaii!  But we actually did not sleep a weekend at home from March 27 until May 8^th!  I've really been enjoying my time out feeling almost normal.  Here are some Pictures:

We are on the Oregon Coast

The Boys go to the Seal Caves... It doesn't smell good!

4 Wheeling on the Beach in Oregon.  (Thank you Uncle Frank and Aunt Linda)

First Day in Hawaii

I was able to paddle board... but it wasn't pretty

Family mini golf ocean side

The boys Loved the wild life

Jude made a goal to take a weird photo with Every statue in the resort

Grammy and Granpy took the boys to see the volcano.  Jude loved to have the top down! 

(very grateful they came to help with the kids!)

Went on a submarine.  Becky got sick, but we saw a shark in a wrecked ship... Just like on Nemo!

The waves were too much for my leg... So this was the alternative!

Priceless 

The boys LOVED swimming with the dolphins, but if you ask them about it, they will tell you they got the dolphin to fart!

 

So here is the good, the bad and the ugly of where we are today!

The good.

I feel great!  My energy is coming back more and more each day.  I was able to kick almost all the medications right away that I was taking the last 9 months.  My leg is getting stronger and seems to be recovering much faster without having the chemo being pumped into me.

Becky gets me to the gym almost daily, and I for some reason keep letting her drag me to classes.  Spin class a few times now and I just did TRX class today…  That’ll hurt tomorrow!  But we are enjoying our time together and I know this is helping my leg get stronger, and hopefully correcting my pulse and blood pressure.

I am playing golf again and able to play 18 holes already!  It isn’t easy but dragging my leg through the finish always feels good.  My game is nowhere close to where is used to be.  I have been asked several times if it’s frustrating to play so much worse or different than before.  My answer is simple and honest, “I’m above ground and playing golf, so no it’s not frustrating.”  Neither of those was a guarantee 10 months ago and isn’t a guarantee forever. 

I am loving being home with Becky and the boys.  Getting to take Jax to school, doing puzzles, Legos or taking Jax to the golf course.  Hanging out with Jude for our morning coffee is amazing.  I felt like I missed out on a lot of this and am so happy to be able to make up for lost time before going back to work. 

The bad. 

My new right leg is an inch shorted than it is supposed to be…  Seems like there would be a more precise way to go about these surgeries but I am told this is normal.  The device did move 1 CM higher post-surgery too.  The difference in length makes it hard to walk without a limp.  Trying to fix this with orthotics and heel lifts without having to rock giant shoes…  The difference plus the week right leg is also now playing havoc on my hips and lower back on the strong side.  It is really painful to sit for more than an hour or so, and sometimes just a few minutes can cause a lot of discomfort.  I’ve been attempting massage and now chiropractic care to see if the pain will dissipate as things get straightened out. 

Continued neuropathy in my hands and feet.  They have a tingling or numb feel almost all the time.  The pain and extreme temperature feelings has gotten much better.  Regular acupuncture has helped (I think), plus time away from chemo.

I am still going to a lot of doctor and therapy appointments to try and help with all the random side effects and recovery.  Detox from chemo can take months and some side effects can last years…  But I would still much rather have some side effects than have any more chemo days!

The ugly.

We know the very real and scary risk of reoccurrence.  Depending on the person you ask or study you read the chance of return is between 30-50%.  And it’s really bad if it does return.  We know the only way doctors know how to treat my cancer didn’t work.  So we become those medical trial people that… well you get the idea.  This scary truth is what we will live with for the rest of our lives especially the first 5 years.  I have another scan coming up end of June.  Prayers that this is another clear scan are appreciated.  We know God has a plan and we pray that the plan was for me to beat cancer the first try.  If not we will continue to fight!

The other part of this reoccurrence risk is that every time a muscle aches or a joint hurts or anything else that is completely normal happens, you think the cancer may be back.  This is a ridiculous feeling to have but is one I have…  and have a lot because my body is going through so much repair and adjustments that my joints and muscles always hurt!  We are trying to learn how to live not in fear, but the truth is, we aren’t doing great at it.  Becky has been having nightmares and wakes up in panic mode that I’m dead and I’m calling to ask doctors to scan me again because I have a sore glut! 

I’m starting to get people asking me on a regular basis when I’m coming back to work.  This is a hard question for me… Going back to work right now would mean it is part time.  I’m seeing some form of a rehab doctor every day.  Because I’m a commission employee, this would be difficult to pull off, and probably not fair to Scott.  (Although I know he doesn’t care and wants me back ASAP)  But my other reality is that 50%...  These first few months of scans are crucial and often reoccurrence happens in the first year.  I’ve missed the last year with my family and now that I feel like I have no idea what is in my future, I’m spending my time in the most important place as long as I can. 

In other news:

Our fundraising efforts (and by our, I mean Becky’s) are going great.  I am busy goofing off and playing with the boys but Becky has been amazing.  We both feel very passionately about the non-profit and the good work we will be able to do from it.  We have raised (Or have commitments for) over $50,000 of our $100,000 goal for this year and still have the event on Sept 12 to raise more money. 

We are already scheming about next year and finding needs that can be filled around every corner.  Honestly helping others has been the best distraction for both Becky and myself.  It feels good to feel like you can help someone else experiencing the same hell we did. 

September is going to be here before you know it.  We are starting to try to figure out numbers etc.  So if you plan on playing in the golf tournament or coming to the dinner and auction, Please go register and get that taken care of.  We are very confident the dinner tickets are going to sell out (we have a max occupancy) so you don’t want to wait on those!  We are really excited how everything is coming together and are excited for everyone to come.

Purchase a Shirt - https://cancercant.itemorder.com/sale

We Did It! Last Chemo Day

I had a neighbor pull over this weekend as I was doing yard work to tell me she was looking at the blog almost daily waiting to hear the scan results!  I guess after I posted it to Facebook I totally forgot I needed to fill in all our blog followers.  It made me so happy to see her face light up when I told her our great news... HIS SCAN WAS CLEAR!  So tonight I sit down and write, as Jonathan is at the hospital, probably taking his very last drop of chemo as we speak.

I almost can't even describe our feelings over the last couple of weeks.  This last year has been one hell of a wild ride for our entire family.  When Jonathan told me Dr. Raj called and his scan was clear, I actually jumped on the bed and started dancing!  Jonathan laughed at me, but I think if he could jump he would have joined me.  But after that initial excitement, we realized we still had 2 more rounds to finish and that pure joy hasn't quite yet returned.  I'm hoping as we wrap up the chemo, and the side effects start to dissipate, our joy will continue to grow.  We have been much happier these last couple weeks, but I guess it's hard to be "over the moon" when Jonathan is still having to deal with all the side effects of chemo.  Maybe that's why we aren't feeling like one would expect?  But don't worry, the therapist said we are both still normal. 

(Our family photo as daddy was getting his last round of chemo!)

 

So today was Jonathan's last day of chemotherapy!  It turned out to be kind of an interesting day... Similar to the very first day we checked in for chemo, there was no bed for him.  This time we know the nurses and decided to check ourselves into the family room on the 7th floor instead of wait on the 9th floor.  So we hung out with strangers and they started Jonathan on his IV in the waiting room.  We met another very nice young family who's daddy/husband has multiple myeloma.  This very young girl had her first experience calling 911 the night before as her daddy was bleeding profusely from his hickman, just like Jonathan has.  His chemo isn't working!  I think these girls were maybe 7 and 9 with a mom not much older than Jon and I.  She told us we made her day that she got to meet someone that beat it, and we got to share with her what today feels like.  So as I'm suppose to sit here and write about how awesome today is, I can't stop crying for this family.  This is what we see every day in that hospital, and being that family is still my worse fear.  Maybe that's why we can't actually feel so "over the moon" excited.  This is so very real to us.  And if it isn't us, we have a very real understanding that it is happening to someone else. 

But we also got to learn what a true gift we have been given, and we plan on making the most of every second we have together as a family, before Jonathan goes back to work.  If the Doc gives us the green light we may take a road trip over the boy's spring break just the 4 of us.  Then shortly after that we are going to head to Hawaii for a week to fulfill a promise to the kids on that vacation to the ocean.  It's about 1 summer late, and we are beyond ready to escape from life for a few days and just relax with no worries or stress about doctors, chemo, chores, etc.  I'm certain when we get there, that pure joy feeling will be back!  It really means that this is over.

I'm going to leave you with Jax's prayer from tonight.  "Jesus, thank you that tomorrow daddy gets the tubes out of his chest.  He is really excited about that.  And Jesus, thank you for listening to my prayers and helping dr. Raj take away daddy's Cancer.  You have magic!  Please help me have no bad dreams tonight.  Amen!"

(Thank you to the nurses from the bottom of our hearts for everything you have done to help Jonathan over the last 9 months.  You are an incredible crew that has allowed Jonathan to keep his sense of humor and helped him make the best of something not so awesome!  You are a gift from God!  Trust me, I understand why you have started taking his blood pressure around his neck!)

Requesting Prayer, Very Big Day Ahead

I'm sitting down on the eve of my 30th birthday to update you all on a very big couple of days that lay ahead of us.  I think at this point in most people’s lives they take some time to reflect on their last 30 years.  I think some people get a little depressed because maybe they aren’t where they expected to be by 30.  Their career didn’t pan out the way they wanted, maybe they aren’t married with kids.  Or maybe just the opposite.  Maybe everything came together for you just how you planned.  So you begin to plan your next 30 years.  I have no idea what turning 30 feels like, I haven’t honestly even thought about it…

Tomorrow, on my 30^th birthday, Jonathan will be getting a PET scan.  A day I’ve been dreading for months now.  By Friday we will know our fate.  Are we back to square 1 and we start this all over again, or can Jonathan begin to recover and life can maybe be something that resembles life before cancer.  Unlike life one year ago, we now can only plan life in 3 month increments.  We plan life until his next PET scan. 

I feel confident that everything will come back clean and we can finish his last 2 rounds in March and then begin to recover from the last year.  But no matter how confident anyone can be even just the tiniest possibility that you could get bad news is crippling.  The fear is crippling.  We’ve been telling the kids for the last couple weeks now that daddy just has a couple more hospital trips and he we be all better.  He will start to feel better.  What if I’m a liar?  Tonight I know Jax knew the magnitude of his prayer as he prayed for daddy’s scan.  Lately daddy getting better has seemed as redundant as “and thank you for all our blessings, Amen.”  But tonight I watched him wipe a tear from his eye as he asked God for a good scan, No more Cancer, No more chemo, and for daddy to take him to play golf again. 

Our Dr. even expressed his own anxiety over Jonathan’s scans.  I can’t even imagine doing his job to tell you the truth.  The possibility of giving people bad news like that… He began to explain how some patients are harder than others.  Some you begin to get attached to.  He told us Jonathan’s scan have to come back clear for his own sanity.

Over the last few days my mind has begun to wonder, did I pray enough?  Have I been listening and doing what I’m supposed to be doing?  Have I learned what the point of all of this was?  Jonathan’s mom and I joked around about this recently, I would have listened to a burning bush!  As if anything I can do will change the outcome.  I know it won’t, but the thought is human nature I’m sure. 

 

So tonight my blog is going to be rather short.  But I appeal to you to please keep our family in your prayers for the next few days.  We really need Jonathan’s scan to come back clean.  We are both trying to so hard to be positive, and to handle this with every ounce of grace God sends our way.  But the truth is we are very ready for this nightmare to end for us.  I would much rather focus my extra energy helping others through their nightmare!  Thank you for taking a moment to pray for us.

Another Treat: A post from Jonathan

I am writing this at 4am from the hospital, finished chemo about 8 hours ago so I apologize for grammar issues #chemobrain.  I am finishing round 2 of 3 for February!  So far easy goes.  Next week will be short week just 2 days in the hospital.  After February I will have completed around 30 rounds of chemo and over 80 days in the hospital!  I have around 10 days left in March and that completes the cycle!  Then we are looking forward to Hawaii with some family and friends!  A much deserved vacation for everyone who has been taking care of me!

Once March is down possibly the scariest part begins…  Don’t get me wrong learning you have cancer is scary but you learn to deal.   You start thinking about what to learn from this, what we can do with this, how we can beat this.  Once you’re down with the treatments you are supposed to go back to normal.  But with my cancer I have a 50% chance of recurrence in the next 5 years!  A rescan every 6 months hoping and praying this beast doesn’t come back.  Always looking over your shoulder.  It is really scary to know you have that lurking.  I guess you just try to live as normal as possible.  I know I will appreciate everyday a lot more.

What is cancer to you…

Becky and I were doing the KHQ interview last week and Stephanie Vigil asked us the question, “What is cancer to you”…  Whoa, that one threw us.  My answer to her was it is just an “awful disease”, that was literally all my mouth and brain could come up with.  Hey nice work brain!  The good news is my mouth just repeated it again and again.  I don’t know what Becky said because I was trying to restart my brain and stop my mouth from repeating that again.  I am sure Becky’s answer was better but she didn’t think so.  It kept us both up at night trying to think about this.  Which may be why I am writing this at 4am.  Hopefully my brain helps me out a little more this time!

Cancer is a journey.  It is a shock, a gut wrenching “why is this happening” when you learn the news.  It becomes your every thought and concern.  Your waking thought, your going to sleep thought.  You try not to neglect everything else around you but can’t help it.  The doctors, the pain, the scans are all this reminder daily that you have cancer.  Then it becomes a mission.  You start doing anything and everything to beat it.  In your mind you know it can kill you but I started to have to put faith in God that he can beat it.  He gave us the medicines and doctors to help us beat it.  Then its days and days of hospitals…  which can be long and boring and depressing at times.  I have tried to make them fun at times.  Like skateboarding down the halls (highly frowned upon!).  I may even try some fake blood pranks this week on the newbie’s. 

But I think I look back and can say cancer was a blessing…  as the boys would say, “Wait What” (thanks for that Frozen!).  I think we have developed stronger relationships, friendships and a marriage from this.  There have been countless blessings from so many people, some were close friends before, some complete strangers who are now friends.  I can’t even begin to say how surprised I am by the support we have gotten.  I need to throw out a quick shout out to some of those.  Becky you are my rock daily, you have been here almost all 8o days that I have been as well as the days at home that are worse than the hospital days.  And keep me upright and on course when the course looks too hard.  Scott & Heidi Rudy you have been here more than anyone except Becky.  Thank you for catering to my weird food cravings of teriyaki chicken and sweet potato fries.  Danny Pecka for letting me beat him every time at Tiger Woods!  And calling to check on me all the time, along with Stu Smith.  My dad, my mom, Becky’s parents who take the kids on a moments notice.  Carrie Everman and Ryan Pettibone.  Our neighbors.  The Spokane Club Family, what a great group of people Becky has met! And all the people who have brought dinners, or stayed weeks with our kids while we are here, several have driven or flown 6+ hours from Oregon or the west side to be here.  I am sorry if I forgot anyone these are the people on my mind and heart, and again I have Chemo Brain. 

I wish it didn’t have to be such a terrible way to get such a much needed lesson in life.  Cancer may be terrible but I will forever cherish friendships more.  I used to be so driven by success and still am.  I guess my overall definition has changed.  The savings account doesn’t need to be so full all the time.  An extra vacation with the kids wouldn’t be such a bad idea.  My success revolves a lot more around my faith, family and relationship.  The work success will follow.    

So what is cancer, one of the scariest rollers coasters you will ever ride.  And it keeps going thru the ups and downs.  The downs get better and easier but they are always going to be there.  The ups are higher than you can imagine.  The turns are jarring but you learn to brace for them and can handle them easier.  I will forever be on this ride but it has made me a stronger man, and hopefully a better husband, father and friend.  (ps. I hate roller coasters.  Won’t catch me on one at silverwood any time soon!)

I am going to sign off here.  Best to let you know so when the grammar and quality improve you won’t be surprised!  Becky will add an update on Cancer Can’t.

I love it when Jonathan gets a wild hair, or can’t sleep.  Lots of things get done!  I also really enjoy reading stuff he writes.  Sorry I haven’t written a blog update in a while.  Things just have begun to seem so normal and I feel like I have a lack of interesting things to write about.  The last few weeks have started to become rather busy though.  After announcing that Jonathan had decided to start a nonprofit we got busy moving full speed ahead.  We’ve begun working with Providence planning and budgeting.   We had to form a board of directors, file our 501c3 paperwork.  We are diligently working to contact businesses to ask for sponsorships and auction donations.  Then, Stephanie Vigil from KHQ got word of what Jonathan was working on and then all of the sudden we are going on the news!  Really, we are very excited that this seems to be getting wings of its own.  We really hope we can make a difference and this project is successful.  If we can help just a few people, it’s all worth it!  Honestly, focusing on something so positive has really been good for the both of us.  We are taking far less time feeling bad for ourselves and using that time to focus on doing something good.  It is working out well. 

We have made some changes to our website.  You can now donate through PayPal on the website.  So if you feel inclined to support this project, please go to www.cancercant.info.  If you also know a business that would be interested in sponsoring this event we would LOVE that!  The KHQ story will be airing tonight, so tune into that as well!  We hope to see you in Spokane at the golf tournament, or if you aren’t a golfer, just come for dinner!  It will be an amazing night!

I also want to take a moment to give a shout out to my cousin Tanner.  He is a fire fighter over in Oregon.  Over the last 2 years he has done the Firefighter Stair Climb in support of Leukemia and Lymphoma.  Typically each fighter does their climb in honor of someone battling cancer.  Jonathan is so honored that this year, Tanner is climbing in honor of Jonathan.  I don’t know if many of you have climbed a significant amount of stairs recently, but I did the stair climber at the gym last week just to see.  This is a serious thing, which possibly would kill me!  This guy is going to climb 69 flights of stairs as fast as he can.  Oh and that isn’t it… He will be in all of his fire equipment.  I’m guessing that adds at least 30-40 pounds because that includes his oxygen tank.  I would certainly run out of oxygen.  So I also want to direct you to his website and ask if you are inclined to throw a little support his way.  What these fireman do is an amazing thing and I have the utmost respect for them for even attempting to do that!  Check out his website: 
http://www.llswa.org/site/TR/Events/FirefighterStairclimb?px=1688892&pg=personal&fr_id=1453

Thank you all so much for all your support of our family and all our little or maybe not so little projects.  We really feel truly blessed to be surrounded by such wonderful people.  We know Jonathan is really getting close to hopefully being done with his chemo treatment and we are beginning to see the light at the end of the tunnel.  We are looking forward to getting back to life as we knew it, but are grateful that we have been forever changed.  I wanted to include this picture, it is my favorite of Jonathan and the boys being outside doing the normal things we used to love doing.  I can see this again in our near future.

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.