The armor is cracking but that is ok

What can I say, we knew things would get harder and they aren’t “unmanageable” but they are harder.  The tricky part with a break like Brad had in December is we stressed about him not getting treated but got used to him feeling pretty good.  He had just started to experience the harder chemo symptoms when he got sidelined so with #8 brought more hurting for his hands and feet and more fatigue.  He even had some nausea and food was just plain gross. I’m thankful his schedule can adjust as needed to accommodate his needs and while it really sucks for him to miss out he can rest to gain strength to make the next thing.  We count on that ying and yang in this process.

I had a little bit of a hissy fit after chemo on Wednesday.  It is time for my 5 year checkup colonoscopy and I realized I’m a year late.  My doctor’s office was sold so no one had my records and deadlines on their radar.  I hastily made the appointment as soon as I could. After some phone calls to insurance and the facility they gave me numbers of anything from $3000 to $15000!  I about lost my mind!  And this is why I love my people, my network and my God who finds me the answers before I totally freak out.  I was texting with my sister and she mentioned Aflac and their cancer policy.  I had heard good things about Aflac and had meant to call and check it out.  I’m annoyed with myself for not investigating earlier when my gut was telling me to.  But that’s ok…the plan is to get some policies in place to help with potential future accidents for the kids…Whitney’s injury in December was expensive and could have been very cheap with Aflac.  I’m getting the cancer policy to help protect anything I could encounter going forward.  By doing that the estimate for the colonoscopy could be $75 (plus premiums) instead of an astronomical fee.  More on that after I get it all in place.  I’m finding that I only follow my gut lately after I have a mini panic attack, need to fix that.

We have had some other things land on our laps in the last few weeks that we are investigating but it all boils down to God providing when we need it and when we don’t know it is coming.   I have to consciously remember to trust him and ask for his guidance.  I’m at that state of “I don’t even know where to start” when I pray so I just ask him to take it all and show me.  And boy has he!  Great things out of the blue, great people reaching out to me and taking care of me.  It is very hard to accept help and generosity but even a little extra attention.  It has been so worth it though, I’m staying open and letting people love on us.

Speaking of that Brad is going to start attending the Cancer Connection breakfasts at the church!  Praise the Lord!  Four long months ago he was SO not ready for any of that and now he’s putting it on his calendar and is excited to go.  It will be perfect, mornings are his Jam and he will be able to get some good conversation, advice, worship and whatever else the group does when they get together.  They have been so incredible to us since the first phone call in September so I’m just so thankful.

A few days ago I would have posted this all freaked out with my head spinning in circles so I’m glad I was able to float back down to earth, screw on my problem solver filter and take care of stuff.  We look forward to heading into Brad’s easier days this week before #9 next Wed. After a fabulous dance competition weekend we are praying we can get through February to our St. Louis trip to the Missouri State Dance Competition! We will have a blast with our Touch of Silver Dance family and I can’t wait!  This team is an eclectic group but boy are they great dancers, beautiful ladies and so darn funny!

We’ve gotten closer with some of the parents through all of this cancer struggle and will cherish them pulling us up when we need it.  Kindness is the biggest gift we have to offer and even the little messages, hugs, encouraging words are the most treasured support.  When our armor cracks and we feel the weight of the WHOLE situation straight on our chests…it is the little gestures that pull us through and up so that we can breathe and refocus.  Finding focus is hard for all of us.  Staying on track is a big feat especially for the kids.  That is what I’m giving to God the most these days because I will make myself sick worrying about them.  I remind them of study time and encourage them to do their best.  I know it is so hard for them and I just hope for their sake they can keep a high level of effort and success.  Down the line schools admissions offices, the business and nursing programs…employers won’t give them a pass because their dad was sick.  We all have to JUST DO IT!  Cliche’ but it rings true.

Prayer Requests:

Please pray for Brad’s numbers that are off and that they find their way back to normal.

Ask God for dramatic healing as we battle through these hard next four treatments.

Pray for some clear, honest and good news from Dr. Pendergrass next Wed.

Send loving, lifting and peaceful prayers to all of us but especially Carter, Whitney and Russell.  My heart breaks for them and the burden they carry but know in some way God will make them better in all of this.

oxox, Peace

Kim

 

All We Want for Christmas is Chemo

I thought about updating everyday for three weeks but wanted to see how the cliff hanger ended first.  After the peak of good news from Brad’s scan on 11/28 we followed that up with “flunking” the blood test on 12/12 due to low White Blood Cell counts.  Brad had a rough ride during #5 and ended up with a sinus infection.  Apparently it is true that antibiotics kill the good stuff and the bad stuff.  I had always heard that but we saw it in action.  We tried on the 12th and the 19th and his count was even lower the second week.  We didn’t let the news put a bummer on our holiday celebrations and Brad won’t miss an event so we just kept going.  They told us to come back on Christmas Eve and we’d try again.  There are definite pluses to missing a chemo treatment since he didn’t have to deal with the side effects and had a decent amount of energy.  BUT that was a catch 22 since he felt good enough to be my Christmas Elf running errands all over town he was also with lots of germs.  After getting kicked out of our second try I started making him Vitamin C drinks with pineapple coconut EmergenC packets, pineapple and orange juice.  I’m not sure if that had anything to do with his rebound but I told him I’d take credit.

The morning of Christmas Eve with lots still to do we went to the clinic with not an ounce of hope that he would get the treatment.  It was quiet, only a few people were there and from neighboring conversations it sounded like many of those patients were the ones who had gotten booted out in the previous days and weeks. Brad commented that all the “derilics” were in it together.  I stayed busy until it was time for them to tell us whether he was staying for treatment and my mood was declining by the minute.  Our very nice nurse came walking towards me with the report in her hand and gave me a thumbs up so I was instantly relieved and got to watch him get the good news.  We were totally shocked and immediately started texting friends and family to let them know he made the cut.  His levels had tripled in five days! Everyone celebrated with us and I think Christmas Eve and Day were spent much happier for all who are rooting for Brad.  His fatigue reminds us of his reality but we are thankful for it at the same time.  Cancer is so weird.  It makes you thankful for the craziest things.

We had a wonderful Christmas week spent with family out and about a little bit, celebrating our friend’s 50th birthday, enjoying time with our teams and truly feeling the holiday spirit.  I used to hate Christmas…it was hard on me as a kid so it took a long time to peel that damper off and remember to make my own new way.  This year truly felt like the holidays were intentional and the presents were second to the time spent with each other.  For anyone who contributed to group gifts given to us I can’t fully express my appreciation but please know you all are life savers!  Our church brought loads of presents for the kids and seeing their faces as they opened each one was pure magic.  We’ve been given so many gift cards for restaurants, grocery stores, QuikTrip and Visa cards.  All of this has been amazing and definitely eased the pressure on me to find ways to make this all work.  Friends handed us cards or venmo’d money to help out and while I feel weird accepting the gifts I know it helps them feel like they are helping.  I know that feeling of helplessness when a friend is having a hard time so I’ve learned to accept help with a grateful heart.

So now that the inlaws have gone back home I hope to be productive, get organized and be ready to roll in 2019.  I have so much hope for a great year no matter what is in store for us.  The gift cancer gives you is the blessing of being present and appreciating very normal days.  We say sorry quicker, try to be happy as we can and I’ve been really trying to stay tuned in to how the kids are doing.  That is the hardest part. Please pray for Brad to stay healthy enough for chemo and for his hope, faith and sunny attitude to remain intact. This is a long road and we feel weary many days but are reminded we have to keep going! I plan to be more organized and focused so I can keep my stress level in check. Cheers to a wonderful New Year!

Super Thankful This Year

In a world with so much noise I love this time of year when we turn our focus in and look forward to spending time with our family.  My perfect holiday is one where I don’t put shoes on all day and I might end up with a messy bun by the end of the day…or even all day long.  I’ve actually become quite the holiday snob in that I really don’t want to leave my house.  Our normal mode involves early alarms, racing from place to place, hauling lots of equipment, uniforms, costumes, coats, blankets, chairs, coolers and stressing about being on time, remembering everything and WINNING!  I admit I have some stress over making sure my house is clean and lost every ounce of time I had to do it over the weekend but I’ll work some magic after work this week to get it all done.

So in a year when some might think we are looking inward at problems, health issues or other things I find myself counting my blessings and thanking God for everything little and big.  The thing with cancer is you have the same exact problems you do normally but with a big heavy layer on top of everything that can either suffocate you or force you to see through it and find a better outlook.  I think in some instances I feel like I should be treated better than normal because I’ve got so much to hold up, keep on track and manage…in reality, I’m the same mom/wife/sister/employee doing the same stuff as always.  The same thing applies to the person with cancer, the kids of the dad with cancer, the mom of the guy with cancer…and all the other people feeling weighed down by the diagnosis.  I find myself taking inventory a lot because I start to get lost which turns into a bad mood or feeling down. I stop myself and have a moment of prayer and reflection to get back on track.  It isn’t easy to stop that train but if I don’t stop it the end result is not good and no one wants crabby mom walking in the door ruining everyone’s mojo.

bekind

This brings me to my sweet kids.  Middle and High School (and College) are hard enough without extra stress.  These last few years I’ve felt like Russell is getting an extra dose of BS from kids about being small and over the weekend he got made fun of for playing soccer…while everyone was playing soccer…he got made fun of for being good.  WTF?  I’m really just OVER the way kids treat him and want to post on every social media possible how EFFING mad it makes me.  But this brings me back to being treated “normal”…kids aren’t going to stop and think “I shouldn’t call him short or tell him he’s dumb for playing soccer because his dad is sick.”  So while my blood is boiling and I want to get on the phone and start texting moms about how mad I am for the way their kids or kids in general treat him I make myself stop.  I screw down that filter and do what I CAN do which is coach Russell on how he can act or what he can do and say.  With God’s perfect timing he learned at his church retreat a great lesson about this exact thing.  Kids that say those things or act like that are “not your people.”  It is that simple.  It takes out the heat of the situation and he can just step back and be like “these guys don’t matter, they aren’t my people.”  Same thing applies to Whitney.  She went through a big thing and friends were mad at her for mistakes they made.  I talked to her about how she just had to sit back and wait for them to get over it and come back and be reasonable.  They all did as far as I’ve heard but the reaction was BS and that is also something that can teach her about leadership before a situation gets out of control.  These little lessons are the same whether someone is sick in your family or if everyone is A-OK healthy.  I hope by not making cancer the focus or using it to treat anyone differently we will benefit in the long run.  We are all just trying to make it work day after day.  Many days we are all OVER it but just have to regroup and keep going.

So today while we are savoring this family time we are also a little anxious about getting the results of a new CT Scan on Tuesday 11/27.  We also have a genetics appointment on Monday but that is more informative and interesting rather than current results we can use today.  I planned a quick one day, work trip to Detroit on Tuesday and while that will be a great distraction I will be super worn out and maybe a little stressed that I’m not with Brad for the scan.  However, it is also a good time for him to go on his own and is at our clinic so he practically knows everyone there.  We should get results from the scan and Chemo #5 on 11/28.  We will have TWO MONTHS down since his diagnosis and two full months of treatment.  Brad’s Nurse Practitioner “Big Nanner” was super happy with all of his blood test results and said his liver function levels are one of a 100% healthy person.  UNBELIEVABLE!  He gained about 6 pounds from his lowest point which is a great start.  These last two rounds he has had increasing hand and foot pain.  This is common with 5FU chemo.  It gives him a chance to rest so that they don’t get worse but he doesn’t much like resting.  On Friday after his chemo he changed the brakes on the van and was hurting pretty bad that night.  We learn each time what to avoid and what to prevent.  I don’t like to see him suffering from any symptoms so it bums me out but I’m able to do extra running around to keep him quiet and give him time to rest.

Brad had a very boring weekend at home while I drove all over two states (not really just 300+ miles) running kids to stuff.  I enjoyed my first Sigma Nu Mom’s Club event decorating Carter’s fraternity for Christmas.  The other moms are so fun and enthusiastic.  I loved hearing them gush about their sons and think we all SEE each other and know how much we love our big boys.  I hope Carter doesn’t mind me making new friends because I think I definitely will!  The current president was talking to me about serving as an officer and I think I just might do it.  Why not?!  He has found a wonderful tribe in the Sigma Nu Fraternity and makes me so extremely proud in how he owns responsibility and has fun but can be the voice of reason at times too.  He’s grown so much in so many ways and I’m grateful for his inner compas guiding him in mostly the right directions.

Whitney attended the Rock Chalk Dance Clinic the next day so I was back in Lawrence again and thankfully was able to help Carter fix his SUV Black Betty while I was there.  We were pretty proud of ourselves for jumping it on our own and getting it to the shop without help from Dad.  It was a good learning experience for us both.  The day worked out perfect as I was able to help decorate my sorority, Kappa Delta, down the road while we waited on the car repair and Whitney made it home in time for her high school dance practice.  That GIRL…she’s so busy, we need to reign her in over the holiday.  She needs to rest and organize as she’s left a path of madness in her wake over the last few weeks.  I’ll be glad to see that pretty girl relax over the next few days and we are all counting the minutes until Carter gets home!

Until our next report…Go Chiefs!

Russell Arrowhead

 

Month in and a Marathon to Go

While October seemed like the longest month ever it was a good learning month and for the most part successful.  We ended the month with Chemo #3 on Halloween and the clinic was kind of quiet which was nice but were amused by a fun loving “Rod Stewart” patient who was super nice and happy to be there because he was too sick to get treated last week.  This experience makes us appreciate the spectrum of sickness and varying challenges.  Much older people are usually hanging out at the clinic which gives us perspective on the fact that they’ve enjoyed 20-30 more years than Brad and I have.  What will we change in those 20-30 years?  Our new goal is to be “them” when we grow up and have 30 more years of memories to make so that we are facing health problems later in life when they are more expected.  I wonder if they think about how fortunate they are to have had extra years and not be the “young” people in the clinic.  These are the reasons we end the day from Chemo Day so mentally exhausted.  We are thankful for our own good fortune and for those around us while hoping we all come out winners at the end of these days we spend together.

Being silly sending a SnapChat pic to the kids and some friends. Woah give me a filter…this is all us, wrinkles and all.

“What do you need?”  “How are you doing”  These are common questions and the hardest to answer.  Some days feel 100% normal, others feel like we are on the edge of a cliff.  While I’m always open to answering because I know the people asking really want to know and am always happy to give an update.  We are very optimistic people so our answers are usually shiny and bright, they are truthful but I’m not going to focus on the things that weigh me down.  We are SO incredibly lucky to have good doctors and miracle drugs to help Brad in this fight.  It is pretty amazing what medicine can do and I’m just in awe of the brilliant minds behind the strategy and execution these drugs deliver.  I’m also EXTREMELY proud of every single caregiver who has ever been given this load of responsibility because the mental stamina it takes is unreal.  I fall into some nasty moods and honestly just try to hide it from everyone and find ways to go be by myself to sort it out.  Then a shift happens and everything is different and I feel amazing and optimistic again.  It is a wild ride people!!!

While we ride weeks of highs and lows I’m also really trying to focus on long term.  We will be fighting this battle forever.  The middle ground goal is for Brad to be labeled “NED” No Evidence of Disease.  He will always be cared for by doctors looking for cancer or treating cancer.  This situation is 100% polar opposite from how his healthcare habits were before but I think he is seeing the benefits and will take full advantage of a healthy life…won’t we all?  We saw Dr. Pendergrass before chemo on 10/31 and he has planned for 2nd PET scan for November 27th.  Of course I planned a business trip for that day…but thankfully it is at our KU Med clinic 3 minutes down the road so I’m cutting the cord and not stressing about not being there.  He will be in and out and we’ll get the results the following day before Chemo #5.  I also put the weight of being a good employee squarely on my back so making sure I’m keeping up with my responsibilities at work is very important.  I feel good about doing the best job I can since they’ve been so incredibly supportive and flexible.  Plus a work trip with mom away for a day will be good for my people.  I’m going to Detroit and am kind of excited, I’ve never been and love watching Rehab Addict on HGTV.

Below is a link to a calendar app people can subscribe to for bringing food over, coming to visit or whatever they can think of.  Brad blew out the sprinklers the other day so that Fall HoneyDo is checked off!  He’s been doing more of those things lately so that is nice going into the Winter so I don’t have to stress about thinking like the “man of the house” regarding what needs to be winterized.  We are cooking up some house new projects and I have a major urge to repaint most rooms in my house.  I’m trying to redirect those crazy ideas into more attainable projects like organizing storage areas which gives me equal satisfaction.

https://my.lotsahelpinghands.com/community/teamwoods

On this calendar I hope to add prayer requests.  You should be able to click on the days to see if I have any notes in there.  I feel like people want to focus on certain aspects and it helps me stay focused on the big and little picture when I break thoughts and the schedule into pieces.  We closed out October with a very fun Halloween night hanging out with the neighbors like every other year before.  Brad had fun talking to everyone since we are all so busy with every day life it is nice to spend an evening talking and watching the kids have fun.

Enjoy some pictures from a few good day adventures: including a spontaneous day trip to Springfield, MO to watch our high school softball team win STATE!  Our friends, the Seib family, enjoyed seeing their daughter pitch her team into a State Championship!  Incredible family, incredible athlete and wonderful young lady!  Go Easton!  You are amazing!  We also stopped by to watch some HS Volleyball and support those ladies.  You could call us Super Fans!  We are a sports loving family that is for sure!

Apparently since Halloween was on a Wednesday the students at KU celebrated by dressing up for about a week and a half!  I got some Snapchats of Carter as a tree and as a secret service agent “guarding” the President.  They looked cute and I was jealous of their good time…college life is awesome!  Last night he texted me while I was handing out candy in the dark saying he needed a sheep onesie from Amazon STAT for a party this coming weekend! Of course I dropped everything and ordered it for him and made him promise to send me pics.  I’m just so proud of that kid for balancing everything and pray for him every day to be able to keep up his focus and succeed.  “You need a sheep costume?  Sure you can have a sheep costume because you got an awesome grade on your Psyc paper.”  This is how my mind works when it comes to my Carter. oxox

Short Fuses and Winning–Ying and Yang

With caution I’m super excited about our progress after Chemo #2 on 10/15.  We set goals and made sure to take advantage of energetic times and get Brad the rest he needed when his energy needed to be refueled.  Going into the weekend without any experience after Chemo 1 and knowing what to expect and avoid after Chemo 2 is night and day difference.  For now we are just focused on nutrition and rest and enjoying a week with no appointments.

I’ve been reflecting on everyone’s needs and how they collide at times.  I think everyone sees when I’m at my breaking point.  My typical solutions is to pretty much run for the door to go run an errand or anything outside of my house to get some non-cancer related fuel in my body and mind.  I hope soon I’ll incorporate weight training and stretching because I feel like my muscles have shortened from the stress pulling on them from head to toe.  Ugh I need to release that stuff asap and get rid of these aches and pains!

So with the kids…I’ve been trying to watch for trouble signs and they pop up in different forms and different times.  I remember seeing moods and behavior in other families dealing with cancer and now see similar behavior around our house.  I remind myself that they are suffering from the weight of all this along with normal trying to grow up kinds of things.  I just pray they aren’t impeded by this stress or thrown off their trajectory because they were all on a really good path prior to 9/15/18.  My main objective is to keep them as close to that same path as possible.  I try to remind myself, Brad and each of the kids that it is ok to feel “off” or have to have some mental health breaks however they need to get it but then also get back to that place of focus.  I remember being a teenager and how hard and stressful it was.  The thought of putting all of this on top seems suffocating.  I had my own suffocating circumstances and came out strong than I ever would have so I know they can too.  Bad moods aren’t such a bad thing and we need to give each other time and safe places to release that negativity so it doesn’t stay bottled up.

Going into this week I’m hoping for less short fuse situations, more Zen time and using this seemingly light week to get some rest.  We also have to do list items to get checked off before the whirlwind of family visits starting with Whitney’s Alice In Wonderland ballet and then the holidays.  Brad spent a lot of Friday picking out a new vacuum so that should help out with the to do list especially since everyone has actually been excited about using it!  GENIUS!!  New Vacuum = People Using it Besides Me!  Write that one down in your book of tricks!

We had a beautiful Fall weekend and took advantage by taking a few pictures when we went to visit Carter for his 19th birthday which is coming up on Thursday!  I wanted to take a bunch of photos all over Lawrence among the beautiful trees….but energy, moods and lack of showering for some made it not the ideal time for a photoshoot.  Whitney and I literally jumped out of the van on the way to the grocery store on Sunday and took some on a side road that I’m pretty sure isn’t really supposed to be driven on but we made it work.  So, check that off the list…fall pics with pretty trees CHECK!