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!

 

The Tsunami has passed…

Well it has been almost two months.  Crazy how fast time flies.  We were headed into a tailwind the last time I posted and sorry for anyone who looks here for updates but the truth is it has been confusing.  Brad had fluid drained, had a scan that looked pretty good from a cancer perspective.  Lots of tumors gone but his liver was really struggling to work.  We met with the Liver practice…to be honest we aren’t a fan.  Not that it is lacking on their side but I feel like liver people aren’t the best to work with cancer patients…I’ll leave it at that.  We met with Palliative Care and LOVE them!  It is like rainbows and sunshine in those appointments.  They want to focus on the good things, how to make things better and goals.  We feel great when we leave there and they do the heavy lifting regarding medicine adjustments and sorting out what the cancer people and liver people are not saying.

The truth is Brad felt horrible in July and August.  In September he worked hard to rally for Whitney’s Senior walk, his birthday, her birthday, soccer games, bachelor party trip to Louisville and helping me juggle the nuttiest month of our year.  Russell and Whitney provide such joy and distraction for us.  They give us family time and we make the best of memories doing the most fun things!  Brad was SO incredibly proud of Russell watching him run his first Cross Country season.  Very quickly he went from top 3 to the #1 runner on his team.  His coach was so beyond impressed and proud of him and can’t wait for him to run track in the Spring.  To top it off Russell was named “Citizen of the Month” in September by his teachers.  When he said goodbye to baseball we never thought the positive impact would be as great but he is so much more balanced and loves his down time.  He likes to read which warms his parents hearts to see him doing something that has nothing to do with technology and using his brain.  God sent.

So here we are, in a “coasting” period.  The bottom line is Brad’s liver is too weak for chemo or surgery and his weight is very low.  He’s in a catch 22, gain weight so when they can do chemo his body can handle it with the extra weight to withstand the chemo beat down.  Otherwise we are at a standoff with the cancer and the liver situation.  Thankfully Brad has been trying hard to each well, gain weight and stick to a low salt diet to help his liver.  He has learned how to rest to do things he wants to do and pushes through extreme exhaustion to make it to everything he wants to attend.

Here are some pics from Brad’s adventures:

Plus and Minus Teeter Totter

Today we met with the Liver Team at KUMed and they were very helpful in making us feel like he has a safety net for this new piece of his journey. While the Cancer Center didn’t have much to say about his Ascites and said it would build up again with no encouraging of getting it drained the Liver people are like “yes if it builds up call us and we will get you in 24-48 hours and don’t wait until you are in so much pain”…yes thank you Jesus! I have no ill feelings towards our cancer team and am just learning how specialists stay in lanes and FOR REAL I feel like the Head Doctor in this game because I see the whole picture.

So in a nutshell they said Brad needs to be in a REEEEAAALLLLY low sodium diet…like 2g/2000mg! Anyone that really knows me understands that food is my love language so I’m excited to make yummy low sodium food for him. I’m usually a low carb eater but maybe I’ll try out his diet and see if it helps me too. I’m just thankful someone put the CLAMP down in his junk food heavy diet. It’s so hard to be healthy when half the Fam is eating all the things that I have sworn off. I’ve gotten used to it but am glad we are all closer to being in the same page. So anyone out there who has a good low sodium recipe send my way!

http://www.sodiumoptional.com So far I’m liking this site 12 hours into this new game plan.

The next steps are “hiring” a new primary doctor because the current one is in over her head and confirmed that thought process today with the Hepatologist (I looooved that she totally agreed he’s tricky and needs an experienced PC). So we meet the new doc on Tuesday. Working on a new lab appt for the following week, an Endoscopy at the end of September and more appts to come I’m sure. I really understand lately why retired people feel so busy with so many doctor appts managing various health management issues. I’m so thankful to be healthy and am trying to shift to taking better care of myself so I can keep this train moving!! 🚂 💨

Brad in his somewhat forbidden but totally smart choice and worth it trip to St Louis for soccer and to stay with the Sly’s. He rested, was doted on, had a mental break from his stuff etc.

Quick Update

So the scans looked so much better and the Y90 did an amazing job but Brad has been so sick, can’t eat, super swollen abdomen and in bed. Dr P referred him to a Hepatologist to address the issues his angry liver is causing.

We went in Monday expecting to be sent to the hospital to be admitted and got sent home with the suggestion that he just needed to let the diuretics work. Poor Brad was soooo miserable so I got on the phone and worked my way through the system telling everyone that would listen that he was so sick and needed help. I got a call from a scheduler saying the one and only appt for the rest of 2019 was Sept 3rd! Omg devastation!!! I sent Brad that text…

About an hour later I got a call from a really great nurse saying she had begged and moved things around and got him an appt on Thursday 8/15. Thank You Jesus! Then she called to say he could go to the hospital today to get his stomach drained. We literally rejoiced! He told me he was ready to go to the ER so I’m so thankful it fell into place to see our people and not get all dramatic and dragged out in an ER.

Today was a long morning waiting to drive over at 12:30 but worked out because it was Whitney Jane’s first day in her nursing program. I was able to take some first day pics.

So off we went and thankfully the staff at KU Med is top notch! I’m so proud of my alma mater for employing amazing people and obviously providing incredible training! We have the opposite experience at his primary care doctors office which is getting fired this month. I DO NOT HAVE TIME for rude ass people or people who can’t make a simple action happen that I KNOW can happen in billing. Come on people!!!!! I’ve been dealing with a visit from January 18th that was coded wrong and I’m down to a $50 prostate test. I’m here to tell you I will NOT pay that bill! Those people are going to wish they had a new job when I show up the next time I get a bill. Just sayin….

So today went well, Brad went home feeling great with Pep in his step and we even went on a quick dinner date during soccer practice. As with this whole process we are so thankful for good days and right now GOOD stretches of time.

Please continue to pray mostly for comfort as I think that’s the number one need! Mind body and spirit, we see God’s hand in all we are going through and are so thankful. ✝️💙

Update on Brad Aug 2019

The last month, really since the end of June, Brad has gradually lost his energy. We expected it because baseball season is hard on healthy people but he has continued to need more naps during the day, had stomach pain and issues etc. He didn’t want to go to his doctor until after our vacation with Brad’s family in Florida. Once there he battled through the week and had some rest but vacationing can be some work too.

Brad is really good at putting on a show. He smiles through pain and fatigue. By the end of our amazing trip he was exhausted, feet and legs swollen, belly swelling each day and couldn’t eat much. I called his Nurse and told her what was going on and they got him right in. They are very good at talking about positives and dance around negatives. Blessing and a curse in my eyes. Since he’s not getting any treatment right now we are kind of on our own to determine if something is *wrong enough* to make an appointment. They ordered at CT for today and we meet with his Oncologist on Monday. I called again on Thursday to beg for a diuretic to help his swollen belly. I’m hoping he starts to get relief from the swelling soon.

Dear Friends, we need your prayers for the doctor to have a plan to relieve his growing symptoms. His liver is not happy and all we can hope for is intervention to help him push past these latest symptoms. He continues to work from home when he can but the kids text me with nap reports. Whitney and Russell see him struggling like he did last year at diagnosis. It seems so weird for this all to be escalating again at the same time of year. I am here to tell you….my children are the strongest humans on the planet!! They work hard to keep their responsibilities in check and their attitudes are amazing. They make their dad laugh, give him their full attention when they are talking and little Russell is always by his side. It’s been a wonderful Summer for them to all get more time together. I’ve been working at much as I can and we’ve been crazy busy. I feel like I’m juggling chainsaws some days and just trying to not miss a meeting or to do with the busy days of school enrollment. We are forever grateful for that stolen week away as a family having fun in Florida and forgetting the heavy reality we face every day. Our dear friends, the Davis Family came to spend a day with us in Daytona which was so good for our souls. We started our lives together in KC, having our babies almost at the same time and always wished the kids could have grown up together but they don’t miss a beat when we get together. Yvette and I say “first best friends are the best friends”.

How do these kids grow up so fast? And how did our families get so lucky to have smart, kind, talented, beautiful and super fun kids! I’d choose to vacation with this bunch any time anywhere!

13 years ago Yvette and I were talking in the phone and both tried to interrupt the conversation with big news…”I’m pregnant! Me too!” Miles apart, oblivious that we both were blessed with Caboose babies! Trent and Russell are two peas and so cute with their opposite dark and light hair. They both are excellent soccer players on the top teams in their conference. They have big plans to try and play together in college. Hey it would surprise me in the slightest if they made that happen.

Whitney wants to keep Trent so she can “have two Russell’s” she adores them both! We are already planning our next trip back to Florida. We are good and easy travelers so that makes all the difference. Everyone is happy, helpful and appreciative. 🌞🌴 if only we had more time, money and less responsibilities we would do it all and more!

Thank you for your continued prayers, please lift up my children as they will struggle to stay focused at school and I can only pray God will help them balance the worry they have for their dad with learning. Please pray hard for Brad’s mental, emotional and physical strength. As for me, I ask God to give me what I need because I don’t know where to start when it comes to specifics. I trust him and his plan and ask him to give me the words, the actions and guidance to carry out his beautiful plan for our lives.

God bless and I’ll update here on Monday after our appt.

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 💙💗💙