Coming in hot for a Summer Landing

I didn’t realize it had been so long since I had posted but as soon as the National Championship hoopla was over we got super busy with Russell’s travel soccer team, lots of early practices and travel etc. It was a fun ride, the boys won their division in the ECNL Champions League to make it to PlayOffs in San Diego. Of course you want to win every game and have every chance to advance but the boys ended with a 1-1 tie, 0-1 loss and d a 2-1 win. I was proud of Russell, I think he played hard, had fun with his teammates and was the best travel partner. We look forward to the busy high school Fall Soccer Season and will jump back into club by mid-November.

Day 1, KCSG ECNL 06 boys in San Diego after a hard fought tie 1-1 in Game 1.

Last day after 2-1 win what did the boys want to do…play more soccer at the park and on the beach.

Russell played his heart out, I’m always proud but especially on a big stage when others might be super nervous. He always says he thinks about every game the same, they are all important and the goal is to play hard and win. Next up is High School soccer so we look forward to matching up to our KCSG teammates during the Fall season.

The boy has UPS!
My sister Jessica and her boys drove 8 hours to meet up with us in San Diego! Family is good for my soul!

He’s a pretty great travel buddy! We are a good team and I have to love that he is NOT a morning person either! This boy challenges me but feeds my soul. Love you baby!

Since we didn’t make it to Thursday games we left on Wednesday to get some extra days at home, work for me and golf for Russell. He’s got the Golf bug BAD! Not such a bad thing but I’m always bugging him about eating and staying hydrated. His 16th birthday can’t come soon enough and as of today we are 12 days out. This month is insane, we are travelling pretty much every week for something or another and I have to try and get my 8 hr+ work day in on the road. Thankfully work is a stress reliever so I enjoy the distraction and process.

July 4th looked a lot different this year, the kids were scattered living their best lives. I was reminiscing on all the years past on friend’s boats, at cookouts doing fun Fam Bam time but truly was so happy my 3 were with the people they adore and enjoy. As luck would have it my bestie friend Stephanie had a light schedule too so we enjoyed her pool and talked our faces off. She’s had cancer twice and GETS all of it. She amazes me and says I amaze her which seems crazy to me. Our ying and yang of cancer is a very good fit.

I’ve been on a good clip these last few months, maybe too busy to think, took wrapped up in work and properly distracted by friends doing fun things, celebrating my birthday the entire month of June (always my favorite way to celebrate) but today was a fun screecher. I’m not sure what prompted it besides Facebook memories of time spent as a family, hard memories from the journey the last year and just feeling so super single. Not single in a dating way but SINGLE like I’m in charge of this shit show and more than half the time have no idea if I’m doing it right. I’m thankful that home feels like home. It feels warm and cozy and not sad. I think a big part of that comes from the conversation we had with Brad about his plan and we couldn’t include a medical facility that would limit visitors. I’ll never forget his face…wide eyed and like “ok if you all want me to die in this house, okay.” It was a sacred process and I wouldn’t have wanted him anywhere else than right with us. Daily reminders are all around and to be honest it can be exhausting trying to process grief.

I have partnered with a friend to help her with some software for companies that help employees through the illness, caregiving and grieving process. I typed out my timeline and notes for her on my way to California last week which was very cleansing to my mind. She’s had horrific loss in her life and we connect on a deep level with very few words. We have a knowing between us that is very cherished and hard to describe. I have terrible PTSD from the last year of Brad’s life which culminates in anxiety that raises my blood pressure to extreme levels. Today I relayed a hard story, took my blood pressure and it was 193/105. I did all I could today to try and alleviate the anxiety, think through things logically but all in all it makes me furious that a person can cause this level of biological reaction in my body. How do you resolve that when your mind is saying it is ok but your actual body is having a major response that is actually somewhat life threatening. Grief is a MOTHER FUCKER and sorry if you think that is harsh but that is the only descriptive words I have for it. I hate how memories make me spiral, I’ve worked with therapists and basically they tell me the situation is so illogical that my brain can’t solve it. So I beg and pray for Jesus to give me forgiveness and forgetfulness, he will forgive all sins including mine. I’m so thankful for my faith. If I didn’t have a Savior to throw all the bad stuff to I’m not sure how I would survive this life. I recommend the freedom of “Giving it all to him” even though today I held it way too long. It is too heavy. Grief is the strangest and worst human experience. IT IS TOO HEAVY. But God says to give it to him…so I definitely try and most of the time succeed except on weird grief days. GRIEF is forever. I wish it wasn’t.

I can step back and be thankful for my dear friends and family that have covered me the last few months. We spread ashes, we had fun, we rested, we did what we wanted on vacation without the vacation nazi making us wake up early…sorry, not sorry Brad. Our rhythm is calm, I’m thankful for that. Carter moved to his first apartment that will change in a month to the final destination. I hope I will get used to the quiet these next two years. I imagine it will be an up and down of busy and quiet when the girls get settled here full time. Maybe in two years I’ll flip the script and do something completely different with our home and life…we’ll see. I’m really not sure I can move away from my gorgeous main suite. The one thing about being a single mom that fits in my core is I can do whatever the EFF I want. Truly my kids are first, my job/responsibilities are next but what is left is WILDCARD baby!

Happy Birthday to me with some really FAB girl friends! Stephanie you are BEYONd! Single Mom BadAss, Cancer Survivor…seriously Jesus you are somethin’ to give me this gift in a real live person!

I guess what I wanted to really hit home on this post is that Grief is really hard, it is different for everyone, there needs to be a wide spectrum of acceptance, zero judgment (yep I’m having a hard time with this) and a focus on joy, health, life and blessings. I don’t do any of this well. I try very hard though. If I could wish away the bad days I 100% would. They sneak up on my like a freaking ninja. I just hang on until the sun rises the next day and I’m usually ok. Sending love and light to everyone and hanging on tight to those around me.

We are thriving

FamBam take on the Royals, the KC cold temps can’t keep us away from the K!

Hi all, I just wanted to check in. As you can imagine we enjoyed a very exciting KU Jayhawk basketball season ending the best way possible! Brad was very much missed in all the excitement but we knew he was enjoying it all from heaven. It seems so strange that he was at the Final Four in 2008 and then in heaven for the next one in 2022. I’m sure I never could have, in a million years, imagine back in 2008 when I was at home with the kids….just like I was this year…that he’d be gone. I was so sick feeling on the Monday of the championship game. I could barely eat, kept hydrating…it felt like one of the awful Mondays the weeks after he left. Almost like a reminder that he wasn’t here but I powered through my very busy day and enjoyed the game with good friends and the boys. Whitney was working at The Hawk in Lawrence among the big crowd of her friends and her boyfriend, Jagger. Good for her, she saw the game with friends and profited from the excitement.

The Lawrence Squad enjoying the Final 4 in LFK

Russell has been so busy with soccer and made the high school golf team in February PLUS got promoted to the ECNL team in our club. So…that means a lot of Sports Ubering for me. A typical day is me driving up to the golf course, 5 minutes from our house, at 2:40 to deliver his golf clothes and clubs…going back home to work…then go back to pick him up at 4:20 with his soccer stuff. We either go to the facility 20 minutes away or 2-3 times a week to the facility 40 minutes away. It is a big fat hustle but I don’t complain because my time is limited with him in the passenger seat and there will be a day when he does all that driving on his own. I’ve already lived through that with Whitney and the daily dance driving. MAYBE when I retire from being a sports uber I’ll actually be able to get myself in shape.

Speaking of that, it has been so cold in KC so I haven’t been able to get out and walk with my big girl Suzy like I would like to do. However, I have been doing really well taking care of myself, eating great food, taking vitamins and just trying to put myself back together. This includes starting an online therapy called Betterhelp.com. I’ve heard it advertised over and over daily on the podcasts I listen to. It is super convenient and affordable. Much better than the one time I went to an in-person therapist. I hope to work on all parts of me, mind, body and spirit as I develop my new normal. I still have a lot of PTSD from the weeks of hospice and some really crazy things that happened. I pray a lot for the ability to forgive and “forget” but relying on the professionals to help me. I’m very at peace with Brad’s suffering being over. It was really hard, especially hard the last year. Only Russell and I know how hard and we are enjoying the peace, the simplicity and time together. I realized that when it was Brad, me and Russell it was always the two of us in the front and Russell in the back on his phone listening to music. Now we listen to his music together which is pretty remarkable. He loves Fleetwood Mac, Red Hot Chili Peppers, Beatles and some really crazy songs that I have no idea where he found except for the ones he attributes the Guardians of the Galaxy movie. Look up “Everybody Loves the Sunshine” by Ray Ayers Ubiquity. This is the kind of stuff that is in his playlists! So funny! We decided in his previous life he was born in 1940. His latest project is hooking up Brad’s record player. I think that will be a focus this Summer when he has more time. Anyway, I’ve really enjoyed my time with him in the co-pilot position talking about music, sports, life and all sorts of things. This is a little reminder…remember to include the kids in the backseat.

MY favorite people (and dogs) on the planet

My whole year was made having all the kids plus Makenzie and Jagger here for a long weekend at Easter. Seriously how did I get this lucky? Even better, Jagger’s brother, Justice, joined us on Sunday for some furniture assembly and a steak dinner. Being a single mom now means I can make whatever I want on the holidays. I kind of like the freedom to buck the traditional stuff to make what we actually all are craving. Guess what…there is no leftover ham to throw away, everyone ate the whole meal!

Russell has been to Vegas to golf with friends, Orlando and Austin for soccer, Jacksonville for Spring Break, soccer in Wichita and St. Louis this weekend and at least one more time in June, hopefully two weekends for State Cup. We will also go to Chicago in June with Whitney and Jagger for Regionals and we are waiting to see if San Diego and Denver will make the list. I have so many trips on my bucket list but Big Russ is my priority so I’ll have to pause on the extra until we know what his teams earn. He’s riding high and having fun! He is counting the days until he turns 16 on July 17th. It will be bitter sweet for me no doubt!

Not sure if this will work on here but this is a highlight video from our soccer game in Wichita, he’s number 8 https://fb.watch/cwt5-lYWaZ/

Besides all of that we’ve been living in a construction zone. I’ll post pics another time but my bedroom and bathroom are going to be a literal oasis! Even with stuff still undone it feels like the most peaceful place on the planet. I’m so happy we have been able to shore up some unstable situations behind the walls and create a beautiful place for me…and the dogs to rest our heads.

God Bless you all, I pray your Spring and Summer is filled with adventure and good weather…..we are impatiently waiting for the warm weather to come to Kansas City!!!

And here we are, a year later and our hero is gone

I had switched to MealTrain for updates so people weren’t looking in multiple places and for those not on Facebook to have a place to subscribe to the latest on how Brad and our family were doing.

I feel called to share our journey and perspective because what I’ve realized is that young people dying with a hospice situation is 100% different than an elderly person. Beginning to End, Top to Bottom TOTALLY different. I feel like if I can share my knowledge and journey I can help others prepare and navigate.

Brad left us on Thanksgiving at 4:30pm after our precisely planned and executed dinner. We knew he was waiting for something and he always was annoyed by the cleaning up process so while the kitchen was loud with laughter and clanking of dishes he and I shared his last moment of breath. I was dumbfounded…I smiled and said to him “you chose me?!” We had waited for 15 hours…the last phase that usually lasts minutes or maybe a few hours lasted 15 hours! It was sad and exhausting and terrible. We all took turns sitting with him and talking to him. I remember sitting with Carter and Makenzie and saying to them and to Brad that “this can’t go one for days” I begged him to stop it, he needed to go. His body was grasping for air and hanging on for an agonizing long time. Selfishly I wanted him to go and stop the suffering he had endured his last year. I knew he wanted to stay for every last ounce of life with us.

So in that last moment it was beautiful, heartbreaking and heartwarming. My sweet husband, who I met when I was 18 chose ME to be in that moment and silently summoned me. We were so connected all day, I felt like I was in a trance. My brain didn’t work, I didn’t feel my body, I was moving through the day doing what I could to make things feel better for others and for him. Saying everything I could so that he felt like things had been completed. Forgiving for anything and everything, promising that we could do this for him. We played music and were all around, we stopped the music and gave him quiet but he still hung on. Then…he gave me 3 quick breaths and one long one. I have a little box in my brain to remember that moment but try not to relive it often. Was he trying to speak? Were the breaths an attempt at I love you? 3 quick breaths for the kids and one big one for me? Or was it all brain activity impulses meaning nothing? You all know me…I’ll spin it into something wonderful and those 3 breaths were different and intentional so I know he was reaching out.

So Christmas was a month exactly. Heartbreaking to some degree but we just sat in the day and did our best. We did the things he had planned, we rested, ate good food and leaned into each other. It was a quick trip for my inlaws as they had all been to our house for a long time and multiple times in the last few months.

I have been paralyzed by feelings and numbness and can finally feel like I can work. Between the two weeks of preparation for his service and then two week to prep for Christmas I felt like I could barely breath. I had days of paralyzing grief where I could barely even function, eat, exist. I was pretty much nauseous for a month except for the service day, I felt amazing and strong that day. All the forces of heaven carrying me through. Today I feel better, still can’t eat much but try so that I can keep sustained and have the energy I need to move through to another side.

What I will say for anyone in this position, the after feels like nothing you could imagine. The relief was a cushion at first, the relief that the mean things, the constant instructions, the questioning of my smallest decisions, the them vs us dynamic, the fight between him working and talking to me and the kids in his last weeks…all of that ugly and hurtful shit faded in an instant. The relief wore off and I was left with such sadness that my best friend of 32 years was gone. The guy that always planned the fun or brought the fun to ordinary days. The guy that pushed me forward even if it was challenging me to do better. I know in the end he was proud of me, appreciated all that I was doing and knew we had worked hard to get as much ready and organized as we could.

Here is a link to a video collage Whitney put together that makes me laugh and cry but remember MY BRAD the way he really was.

https://drive.google.com/file/d/1yQ5HvHwrQN4XYf5zFkL1OG7g-QwDGF_A/view?usp=sharing

Here is the link to the service. https://livestream.com/accounts/3200605/events/9975031/videos/227976586?t=1639230516992&fbclid=IwAR28vaYaiPW0JJhTri048YaU57M_kQkj4n8JN0PtlELEli5MhWxl-A1BdTE

I’ve watched it about 5 times just to connect my brain and heart and the reality of pulling off such a wonderful day for Brad. I would build strength then it would drain out of me. Saying goodbye to all of our friends was so hard…they’ve stayed connected and reach out just when I start to feel alone. The thought of “widow” and “single mom” is too much so I just don’t go there. I’m a Mom of 3 kids and Dog Mom of 2 busy dogs plus a full time hustler as a Senior Recruiter. That is where I’m leaning into as my currently defined purpose. Care for my people and get people jobs. My two responsibilities for now.

God Bless you all, thank you for your prayers. I’ll be using this blog to update my experiences and share what I can to help.

Chemo Repeat and Research for next steps

I realize it has been since Christmas that I updated, my meal train link is updated more regularly. https://mealtrain.com/g475e8

Quick version is Brad was on Lonsurf the last 5 months. He had a hospital stay in January after his “lung drain” thoracentsis resulted in a punctured lung and infected fluid. He had a chest tube for a week and was on high powered antibiotics. It was a mess with covid restrictions, trying to work and take care of Russell plus the Big kids were still at home and not back at KU until the beginning of Feb 2021. We all made it through and Brad came home after 9 days. He took a break from chemo until he gains some strength and it showed signs of leveling out his CEA (cancer markers) but in recent months it has been jumping by about 20 points each month.

In May we stopped the Lonsurf and went into research mode. We sought second opinions from Mayo and MD Anderson but they agreed KU was doing everything they would do and didn’t have additional recommendations. We then turned to the KU Research department which has been an amazing group to partner with in the whole body decision making process. Dr. Baranda has been amazing and her big concern is the lung situation. She is pushing the team to come up with a solution to stop the fluid going into his lung so it will stay in his abdomen and be easier to deal treat. A tap to the abdomen is much less invasive than pulling fluid between ribs and the lung every 4-5 days. The risk of infection and complications is high. He’s had complications and hospital stays but the team in Interventional Radiology has been terrific and incident free the last several months.

We celebrated Carter’s graduation with family and about two weeks of visitors. It was a lot of fun and we’ve been working on purging and organizing ever since. Having 5 of us back in the house with ALL of the college stuff in tow makes for crowded storage spaces. The weather in May was pretty chilly and rainy so we took advantage of better weather Memorial Weekend to do some cleaning.

3 ceremonies cancelled…we make the best of it and celebrated and took pictures on campus with all the other graduates without rules and distancing, it was great! We spent the weekend getting to know Carter’s super darling girlfriend, Mackenzie. They are such a great match and she was a joy to have around.

Research Mode: Brad has had scans, a new liver biopsy and currently is going through DNA testing to see what else they can seek out to treat his cancer. He is receiving the most in-depth research possible. Dr. Baranda, didn’t want to wait any longer so she and Dr. Chuda agree to put Brad back on a chemo that has worked for him in the past. Dr. Baranda has been amazing and is “a big deal” an KU, when she speaks people listen and react. We know she’s working behind the scenes getting appts set, testing done and pulling together high level doctors to look at his case.

Brad will start Folfox on Monday, 6/7 (tomorrow). This is a pump he will wear for 3 days and causes hand and feet pain. We will meet with his Nurse Practitioner, they will do labs then his treatment. We will go for his lung drain at 1pm then off to Russell’s soccer tryouts. It will be a busy and mentally draining day. We need prayers for the side effects of the chemo to do more good than bad to his body and for the drains to continue on a normal and incident free track. We finished Russell’s soccer season so no more trips to St Louis.

After tryouts this week they are going to Minnesota by the Canadian border for a fishing trip 6/16. We have the drains and chemo scheduled so that he will be primed for a good trip. The boys are looking forward to it and I plan to have some relaxing time and maybe some GIRL time as well. I turn 50 on 6/13 so I’m celebrating all month properly with my various circles of friends.

We are having a backyard bask “Sunday Funday” at our house. Can’t wait!

We are going to California in early July and look forward to spending time with my sister’s family and some of Brad’s high school friends. It should be Epic!! I can’t wait! We hope to sneak in another trip before school but need to get through these next 5 weeks.

Thank you for your continued prayers and support! We are constantly reminded how big our TEAM is! This weekend we saw some old friends from past teams and the warm smiles and hugs were priceless! God has brought so many people into our lives through sports, dance, our previous school and work lives…we try to keep them close no matter where life takes us. I keep this blog going because I know there are other parts of our support system out there praying for us that we don’t get to see. On my heaviest days I think about everyone that tells me regularly that they pray everyday for us. It is such a comfort and never ceases to touch my heart. Seeing old friends from YEARS ago playing little kid soccer, giving us the most heartfelt love and support is priceless❤️ Thank you for being apart of our story and cheering us on. OXOX

Win or Lose we just really love watching Russell play soccer!

Happy New Year! Let’s make 2021 great…but first a hospital stay and tune up.

**our friends set up this meal train. It has been an easy way for me to update people and you can receive emails when I post anything new. https://mealtrain.com/g475e8 I’ve been posting more on Facebook but Brad doesn’t like all the attention.**

I’ve been meaning to get on here to send out some updates but things have just been so dang busy! We had a great Christmas with Brad’s family and had our neighbors over for New Year’s Eve which was great to catch up with everyone. Brad’s sister’s family had a ski trip planned but our nephew Blake ended up with a broken arm that had been hurting since he arrived in KC. Our Children’s hospital was great and got him in a cast in a matter of hours. Since he was unable to ski we convinced Paula to leave him with us while she met up with her fiance’ and friends in Colorado. Russell and Blake loved having some extra time to hang out. Paula came back to fly home with him so we had lots of family fun over the holidays!

On Monday the 4th we kicked off our week with a Thoracentesis, lung drain, and while Brad was there I was fighting to get his oral chemo as there was a glitch and we hadn’t received it yet. He was supposed to take it Monday morning so I was urgently trying to locate it so he wasn’t thrown off his schedule. It is very specific dosing with 5 days on, 2 days off and then two weeks off. Thankfully KU Med is very good about pushing past approval and financial obstacles so they made it happen and I picked it up right before picking Brad up from the procedure. Here is a God Wink #1 in this whole situation. We try to make chemo be the first thing that is billed in the new year because they have grants that will pay for our deductible. I worked with the financial dept to push through the chemo so it would all bill correctly. If the drain was billed first we’d have to pay 100% of the deductible. There is more to that piece I will come back to it.

I had given Brad some calming tea and CBD and had high hopes of his blood pressure to hold but when he texted me after he said it was awful, the most painful procedure and his BP was 45/24 at first then 65/45 during the whole procedure. I picked him up and he did not look good at all and was in pain. He rested while I ran some errands with Russell, when we got home he and Whitney said he had been confused and wasn’t tracking on conversations. At bedtime he was in a lot of pain in his back and chest but a pain pill helped him sleep. The next day I had planned to go to my office but he just did not seem 100% so I worked from home. By mid-day he wanted me to call the cancer clinic and see if they could see him. We went in at 1:30 to talk with Dr. Chuda and thankfully they let me attend. It was a short appt, he opened up his xray from the day before and said he lung had been punctured and collapsed. We were shocked because Brad was not in extreme distress. I think he’s gotten so used to one lung being compromised so it didn’t stand out as a big difference except for the pain.

We were sent to the downtown hospital for Xrays and likely admittance. We waited for an hour to get into the ER and tried to stay away from the other sick people to avoid germs. They put in a chest tube which was extremely painful! Eventually he got moved to a room which was in the overflow section and very sketchy accommodations but the nurses were absolutely incredible. They fought for him to get answers and were very smart with information they shared with us.

We laughed at first about this contraption and how cutting edge it must have been when it was installed, that quickly turned to desperation to get him away from the toilet 3 feet from his bed.

I utilized patient advocacy to help push the doctors to see him and help us find out the plan. Finally at 3pm we had a literal parade of specialists coming in one by one to tell us their piece of the situation and what they will be doing. At the time we were desperately pushing for him to get his chemo drugs approved. We had them, they were sitting on the counter but the pharmacy had to verify them before they’d allow him to take them. That was so frustrating after I had push so hard to get them approved and through the system on Monday! The cardiothoracic surgeon, Dr. V, was amazing and so positive! He brought us an article to read about a procedure he wanted to do that involved putting mesh on his diaphragm to help block the fluid from going into his lung. It would still go in his abdomen but that was a much easier process on him to get drained than these lung drains. We were so happy to have been seen by everyone, ended up getting the chemo approved and were feeling so accomplished!

I went home to be with Whitney and Russell and get some items Brad had requested and attempted a good night’s sleep. I woke up to a very disappointing text from Brad that said he had infection in his lung fluid and the surgery was cancelled. His liver doctor came by and said she was against the surgery now or EVER and didn’t want anything foreign in his body because there would be a very high risk of infection if he had the mesh or a permanent drain inserted. Disappointment turned to worry as we needed that infection to be cleared. My level of urgency to get him in a new room was elevated and escalated with Patient Advocacy. My husband with infection flowing through is body did not need to be in that grungy room 3 feet from a disgusting toilet! By bedtime he was moved to the cardiac floor which is quiet, clean and there is a well equipped real bathroom.

On Friday we had follow ups but nothing new. It was a relaxed day settling into his new room with the new rhythm of the staff. We knew the weekend would be quiet but hoped he would get the chest tube out before Monday. There is a massive volume of fluid coming out because there is no resistance to the fluid’s path. It had to work hard to find the easier path into his lung and now that it can just drain out the liver and kidneys are not taxed with backed up fluid and resistance. His labs are showing that his organs are less stressed as they’ve all come down from a peak on the 5th due to infection and stress.

I had some friends come by on Friday evening to drink some wine and catch up. It was so nice to laugh and share stories with my girls. I think it was good for Whitney to let lose a little as well. Russell went to his soccer friend’s house for the night and enjoyed a steak dinner and a workout with his buddy. It has inspired him to set up the weight bench in our basement and work on strength training. This kid is growing up so fast this year, mentally, physically and maturing in how he attacks his goals.

On Saturday I spent the day with Brad and we treated ourselves with a yummy meal from a local asian restaurant. The hospital has some amazing restaurant within walking distance so that is nice change of pace from hospital food. He was pretty tired and I had plans to go to dinner and the Heart of America Youth Ballet with our dance friends. It was an absolutely wonderful night and break from the grind of the hospital stress. The ballet was Sleeping Beauty and was wonderfully choreographed and performed. I loved watching Whitney and her friends enjoy the show from the audience for the first time.

Sleeping Beauty, performed by Heart of America Youth Ballet
Rite of Passage, these ladies came to support their beloved HAYB and cheer for the younger dancers performing. We had so much fun and were able to catch up with friends before and after the show.

On Sunday Whitney had planned to hang out with Brad while I took Russell to his soccer game in the morning and had some cleaning and food prep to do for the week. I was so exhausted I didn’t get everything done but did enjoy a lettering class by one of my favorite ladies, Gale Nation. She has been a crafty friend for a long time and I’ve been wanting to take a class from her for a long time. The plan was for Whitney to take the class with me but it was a good time for her to go hang with her dad. He requested her to bring dominos and candy. I loaded up a bag of snacks, banana bread from a friend and sent $50 that was given to us for a good lunch. They had a good day and I got some much needed rest.

Late last night a nurse said something about surgery today to separate his organs. We were like “WHAT SURGERY?”!!! I told Brad just relax, she was probably reading about the mesh surgery and got confused. This morning the doctors confirmed, no surgery and want to keep the fluid draining and monitor how the diuretics affect the fluid if at all. It is looking like the chest tube will come out tomorrow and we will work to get him released. With his lab numbers looking really good we hope all meds will be tweaked and a schedule for fluid drains will be established. While it is a hassle and his blood pressure drops “Vagal Response” are scary and uncomfortable we will try to manage our way through them. Anything is better than being in the hospital so we will just have to power through and accept this as the best option.

Please pray for Brad to continue to *heal, *maintain a positive attitude, *enjoy the good in his days and for all of us to *keep our stress level low, our *hope high and remain *strong in our faith that God is holding us close and carrying out his plan for all of us. We are juggling work, school and activities along with these medical appts and situations. I’m sure we will continue to grow in strength as a Family and in our Faith.

God Bless, thank you for your prayers! Kim and the FamBam

New Chemo and Relief

Quick update, Brad was approved for and started Lonsurf which is a chemo pill, well multiple pills but he will have the flexibility to take them at home and not have to sit in the Cancer Clinic multiple days during chemo week. He’s had issues with his Blood Pressure dropping and the latest drop was 42/24 during his most recent “lung drain.” He thinks it is mental so he’s trying to work on relaxation and trying not to let the needle phobia affect him. We have the next one set for Thursday 12/10 which is 6 days from the most recent one. We are trying to stretch out the time between drains and so far it is going well.

Family trip the The Plaza for happy hour and shopping

Brad had so much more energy these past two weeks and was able to get some honey do projects done. We hosted a big Christmas treat and crepe making party for my family. It was a loud, busy and fun day! We had mimosas and appetizers while we worked and celebrated with a Mexican freast and margaritas for dinner. Somehow we lucked out and got to keep a lot of the goods!! Our neighbors and friends will be the happy beneficiaries of all of our goodies.

Girl Gang: my sister Marci, cousin Jacque, Aunt T, my Mom, me and Whitney…so glad we could gather and have fun!

So far Brad doesn’t seem to be affected by the chemo drug but it is hard to tell until he’s had a few doses. Thankfully they gave him good nausea drugs and their goal is to keep him from feeling bad. His CEA is at 8.2 which has slowly creeped up since October, we are hopeful that comes down with a positive reaction to this brand of chemo.

Prayer requests: please pray that his fluid stays under control with the goal of not accumulating at all. We need this chemo to work on his active cancer, he needs to gain weight so he can fight through the days he doesn’t feel well or doesn’t have an appetite.

Please pray for our kids, it is so hard for them to focus on school and it stresses me out big time! I’m trying to stay focused on work so I totally empathize with them but schools and future employers don’t give any hall passes just because your dad is fighting cancer…good grades are a must in this competitive world! This is my prayer over and over for them to find their focus, motivation and clear minds. We trust God’s plan, I know he is actively working in our lives and guiding us through this journey. Some days I wonder if we can power through the hours and other days I KNOW we can. I find great comfort in Isaiah scripture these days. I definitely need God’s Firm Grip!

More fun picture from our treat and crepe day.

Thank you for your continued prayers and support. We feel it on the best and worst days.

Love the Woods

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 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!

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