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