Ready Set Go…new treatment, new battle

We are thankful for the treatment break since June and the last few weeks of multiple appointments has given us huge perspective on what we’ve missed…in a good way!  Pet and MRI scans, Hepatologist, Oncologist…even a Dentist appt was piled on last week.  We were left with a “now what” feeling after all of it was over.  Today we met with Big Nanner Brad’s Oncology Nurse Practitioner.  Thankfully Brad loves her but honestly…her sugar coated delivery makes me a little crazy.  I much prefer Dr. Pendergrass’ black and white delivery but that is why they make a good team.

Brad starts taking Vectibix tomorrow.  So far it will be the only thing he is given and the hope is it works on its’ own.  There are two chemos they can add to it and they are researching another drug that is a targeted therapy for his kind of cancer DNA.  While it seems great to not be exposed to chemo which causes all kinds of side effects the list of symptoms this new drug offers is quite concerning.  Big Nanner promised she has ways to help get rid of the rashes/acne and the crazy carnival freakshow looking eyelash growth can be easily handled at home unless the growth is on the inside of the eye…google it…I’m not posting gross pics here as they have burned into my brain.  My husband was great at saying “I’m fine” with the other treatments that could only be detected by his weight, coloring, energy level, hand/feet pain and stomach condition.  People say all the time he looks great.  Well…this could throw him for a loop and the fact that they said, “the worse the rash the happier we are because it is working” well that is super unsettling.  But, we believe her when she says she can make it go away.  Hoping for the best.

If tolerated well this treatment can be given for a long time so we are facing the inevitable fact of clinic visits at least every other week and if all goes well that will be it for awhile.  We were able to shed the Hepatologist visits with the warning that treatments can cause irreversible liver failure.  The only other option is to leave his tumors alone to grow and attack so this is the best option for both his cancer DNA, full body side effects and liver health.  We trust Dr. Pendergrass and God’s plan so we will renew our amour and get ready for the new battle.

Thank you for your continued prayers, we rely on them and feel your support.

**Please pray for mild side effects, no further liver damage, his stomach side effects to be minimal and for him to continue to feel well enough to gain weight.

**Please pray for the kids and I to be the best support system we can offer him and to stay strong and productive in our own paths.

Family Fall fun included lots of football, soccer and dancing. It is bittersweet to celebrate Whitney and the 8 senior dancers’ last year together but we are beyond proud.  She is co-captain of the team and leads them well.  Next up is Competition Season…but first let the Nutcracker festivities commence!

 

September 29th and where we are today.

I’m sure lots of families have interesting numerology milestones in their family but I feel like we have a LOT of interesting coincidences. My favorite is that my birthday is 2 days before my dad’s and Whitney’s is two days after Brad’s. I love that they can share the Virgo daughter/daddy birthday bond and celebrate every year together. Some other fun facts…my sister, Jessica and brother, Kyle were born on the same day 3 years apart and are 13 and 16 years younger than me. Even though we didn’t really grow up together and started our real life relationships after they had both graduated, we are just as close as my sister Marci who I grew up with. Sadly Marci and I were separated quite a bit after I graduated when she was 12 so similarly our strongest part of our relationship started after she was a grown up and graduated.

Carter was born 4 days before Brad’s mom’s birthday and Whitney was born 4 days before Brad’s dad’s Birthday. While we planned having them the timing was just a coincidence. Our first baby was due the day before my sister Marci’s birthday. So that brings me to my thought process I had today about the fateful September 29th.

Brad and I went on our first date which was a “Date Dash” in October 1989. He had seen me and my bestie, Kelli, in a grocery store and was with our guy friend from HS who said he knew me and could introduce us. The Date Dash came up and we were set up. It was a blind date for me so when we met I was glad Chris picked well and must have paid attention to my “type” in high school. Brad was tall, cute and funny. We had fun dancing and a little underage drinking and I even got a kiss goodnight. We continued to be party friends but since I was a freshman and he was a pledge at Pi Kappa Alpha we both wanted to just have fun and not start anything serious. We went on dates throughout that school year and when Spring came we were both kind of sad we’d be apart over the Summer but planned on staying in touch. He wrote me funny letters and it was almost impossible to call because I was at camp and only had a pay phone to use. Do you remember how hard it was to call long distance back in the day???? So we wrote letters and when we got back to school he invited me over to his fraternity to catch up. I was so busy with my first year in the sorority house that I didn’t really have much time to hang out but we both settled back into school. My sorority had a party on September 29th, 1990 so I invited my party buddy Brad so we could finally spend some time together. The details are fuzzy but I remember an awkward conversation at The Wheel about becoming boyfriend-girlfriend and being exclusive. I think he started to not like me going to other fraternity parties and let his guard down so we could actually date for real. We were both very guarded in the dating department so we had to break each other’s walls down during those dating years.

Brad and I celebrated 9/29 as our dating anniversary the rest of college and after I graduated we ended up moving in together and had to live in a little town called Spring Hill, KS near my new job. We saved money by living together which was somewhat scandalous (haha!) but necessary since we were poor and just starting out. After a successful run at the Miami County Republic selling advertising and enjoying the old school way of producing newspapers I dipped my toe in the big city job market (found an ad in the newspaper) and landed a job at the Kansas City Business Journal. We were moving back to the city and needless to say I was getting restless with our status and had kind of given up on getting engaged. I started my new job on 9/4/94 and we headed to Vail, Co over Labor Day weekend for a friend’s wedding. On the way up the mountain Brad FINALLY proposed on 9/6/94! He did a great job, the ring was perfect, setting was amazing at a restaurant overlooking Denver. That was my first indication of how Brad ticks. He likes to surprise me and does things on his time table. He has told me NO many times over the years then surprised me with what I wanted or wanted to do. ❤️

So fast forward to 1998. We decided to start trying to have babies, I had wanted to wait but decided I didn’t know how easy or hard it would be and moved up our timeline. We had some medical delays and had to wait a little longer but the first month we got the green light to start trying we got pregnant! We were excited but so blissfully naive. We weren’t going to find out the sex so when we went in for our 20 week sonogram we brought my besties, Julie and Erin and used Julie’s giant old school video camera to capture the moment. The tech was really quiet, we were looking at the baby’s profile, cute button nose, chubby tummy and he looked perfect to us. The tech kept pushing on my tummy to get the baby to move around and I finally asked if something was wrong. She kind of mumbled, I started crying, my friends left the room in disbelief and we were told to go over to our Midwife’s office nearby. Before she turned off the machine I asked her if we could know the sex. It was a boy, we later nicknamed him Tyler. Our baby’s brain didn’t develop past his brain stem and was diagnosed with anencephaly. While I felt a little movement during my pregnancy I would learn how different that was with my future pregnancies. I had a dull uneasiness during those 20 weeks and that day I realized why. I didn’t feel comfortable sending my maternity letter out to clients and hadn’t planned any showers, my intuition was right. Our Midwife connected us with a wonderful doctor who would perform the DNC. I was thankful I didn’t have to get induced or have a c-section. So on September 29th, 1998 our baby boy went to heaven. It was 8 years to the day that we decided to “officially date.” I remember wondering what those little college kids would think about this huge heartbreak if they knew what was coming.

Our broken hearts were healed on baby Tyler’s due date February 17, 1999 with the wonderful news that we were pregnant again with Carter. We were comforted by the extra sonograms we had with the rest of our pregnancies and found out the sex each time. No more surprises! Every year I honor Tyler by thinking about him on 9/29 and the kids talk about their big brother in heaven. They understand the order of things and that if he survived maybe we wouldn’t have each of them as they are now. I’ve also talked to Russell about how he could be that lost baby and might have gotten tired of missing out. Who knows but with each healthy baby we felt immeasurably blessed! They are so perfect and bring us such joy in their own and very different ways!

So our next encounter with 9/29 was my first colonoscopy. I had pain and unexplained bleeding that led me to an emergency colonoscopy. I was 38. I had 4 polyps removed and was so thankful for my symptoms and doctor’s swift actions. I had follow up colonoscopies and paid $1000s of dollars for them to make sure I was free of any additional pre-cancerous polyps. That was 2009 after too many deaths in our life so a cancer scare was very terrifying.

I’m sure there are other 9/29s that are notable but the most recent, 9/29/18 was THE turning point in our lives. After a month and a half of being sick, losing 30 pounds and having pain in his stomach Brad was diagnosed with colon cancer that had spread to his liver. After two full exams in the ER and a Primary Doctor I found online after getting told numerous offices weren’t accepting new patients. He had a month of tests and finally an ultrasound that showed lesions on his liver. The doctors didn’t notice is enlarged liver during either of his two physical exams.  Our oncologist told us it was enlarged at least double the size and extended 4 inches under his rib cage.  This was causing his cough that he had for over a month and caused him to not be able to say a full sentence without coughing.  I still don’t understand why a doctor didn’t notice that int he beginning and START with the liver tests. But I am thankful his Primary kept searching and discovered the colon tumor in a CT scan and confirmed the metastasis to the liver. His ultrasound was on his 48th birthday 9/11/18 and his diagnosis was on September 14th. We were in shock and had a lot of phone calls to make. I told my boss I would have to be at a lot of doctor appointments and needed flexibility to figure out what was going to happen next. Against Brad’s privacy wishes I reached out to a friend to see if he had any “INs” with KU Med. I needed action fast and wanted him to see an oncologist immediately. That night, Brad after the CT scan revelation, went with Russell to his soccer game and I went to Whitney’s football game at South. I felt like a zombie. I floated through the night.  I watched Whitney on the sidelines smiling so big and my heart broke.  I knew she’d be crushed by the news we had to tell the kids the next day. I had a busy morning planned getting Whitney from her parade to Lawrence for Carter’s first Family Day at KU. Brad and I had agreed we would tell the kids while we were all together as a family. Whitney and Russell had watched Brad decline so fast and get super skinny. We all knew something bad was going on.  The cough wouldn’t go away, he laid around a lot and that just was never him.  He didn’t take naps and had fevers every day around 1pm.  He would shake under a big blanket until it broke.  When the fevers started I knew it was cancer.  Carter was blissfully oblivious and we all protected his ability to enjoy his freshman year and not have any of the stress we were feeling at home. We were also still getting used to being a family of 4 most of the time so being the FamBam 5 was always very special.  I got all of us some little thread bracelets with a little silver coin to symbolize our unity in the situation even if we weren’t all together all the time. Brad’s is bigger and has a coin that symbolizes Serenity. He has worn it every day since. So….on August 15th, 2018 we dropped our oldest Son off at college at KU and on September 15th, 2018 we had to deliver the heartbreaking news that their dad had cancer and would start fighting it immediately. It sucked. I learned to compartmentalize my life with cancer and everything else. I encouraged the kids to keep their grades up so they wouldn’t add that kind of stress on top of worrying about their dad. It was bumpy at times but all 3 ended the year reaching their academic goals and will head into next year with the ability to cope while keeping everything in check.

We got home from Family Day and I got the number I needed to call Monday morning. By the time I got to work that Monday the KU Med Nurse Navigator had all of Brad’s files, was coordinating biopsies, a colonoscopy and helping us pick an oncologist. I was so thankful the ball was in their court (KU reference intended) and on September 29, 2018 my husband had biopsies done on his liver to scientifically determine he has Stage 4 colon cancer metastatic to his liver. That day sucked, he couldn’t eat forever, the process was slow m, the medical waiting room before surgery was so frigid and his patience was beyond tested. Honestly, the rest of everything has been way more pleasant than that experience and I won’t mention the hospital but it wasn’t KU Med and their billing has been the most messed up of them all.  I’ve been strong, I’ve been a disaster and I have no choice so I just plow through and keep things going. I’ve battled with a lot of doctors offices over miscoded invoices and billing mistakes. It’s my least favorite thing but I’ve learned a lot and am less emotional about it. It usually works out in the end.

Today he had his second Y90 procedure which is really cool science involving shooting the tumors in his liver with radiation beads that choke off the blood supply and dose them with radiation. It is an outpatient procedure done in 3 parts-> mapping and test run -> right side which is the hardest as it is 2/3 of the liver -> then the left side which ended up taking twice as long because of the anatomy and they had to basically do the whole thing twice in two spots because if the arteries. So far the pain isn’t as bad as last time so we are thankful that. Dr. Collins and his nurse Elizabeth said their goodbyes and wished us well. It’s weird…you establish a relationship and trust then they are done with their part and say goodbye. All we know is there will be a scan in two months and a visit with Dr. Pendergrass at some point. While it is SO nice to have a lot of normal feeling days it is weird to not be so closely watched. It has felt like the stress level has been dialed way back enjoying the non-treatment weeks.

We would love your continued prayers for God’s grace to continue to guide and lift us up. We feel happy as a family of 5 and are cherishing this Summer all together ❤️

Science is Cool

We met with Dr. Zachary Collins on Friday and really liked him. He is an Intravenous Radiologist and will be doing Brad’s next treatment. He will perform Y90 which involves a long mapping procedure on Monday 5/6 then a first treatment on 5/13. It will involve anesthesia for a test run and they block an artery that leads out to other organs. He will have to lie flat a lot and get imaging done so they know where to shoot the radiation. It is delivered in little beads that cuts off the blood supply to the tumor and the radiation is then distributed over 2.5 days. I’m sure a Google search describes it better but that’s the process in a nutshell.

The most important part of our meeting was Brad asked about life expectancy. He has looked at stats online and heard the words “this is non curative” but hasn’t asked THE Question. The doctor said this will add 6-12 months to 5 years and said we just don’t know. He was pretty bummed out but I told him we don’t know what things will look like after the procedure. While the amount of cancer in his liver has always been the biggest obstacle we’ve seen progress in shrinking it. Clearly he has lived a long time with a lot of cancer being in his liver so really we are beating it back with any treatments possible. It can be compared to heart disease…you just keep treating it and trying to be as healthy as possible. What we DO know is he feels really good. I told him to focus on how he feels each day and as long as we can keep doing things to prolong how he feels now then it is successful. He was SO sick when we started so in comparison the chemo has already given him his health back.

Our Spring has still been chilly so he has enjoyed the cold sensitivity fading. He is hoping for his taste buds to rebound and neuropathy in his hands and feet to fade. With this new treatment and plan he will only have a few dates on the calendar and the rest of the Summer should just be filled with baseball and soccer! Hopefully we will get some Lake days in there too! I had expressed to our oncologist that we just really wanted him to be as well as he can this Summer. While medically it was time to switch it up I think Dr. Pendergrass took that into consideration and I SO appreciate that.

Cheers to a good Summer and prayers requested for the kids as they work hard to finish the school year strong. Please pray for our mental strength, Brad’s physical strength to endure this new treatment and don’t take a minute for granted! Every day is a gift!

I’ll close with some fun pics of the kids doing their thing 💙💗💙

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