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 💙💗💙

Plot Twist, trying something new

Brad Update:

Doctor is stopping chemo. He said the progress has leveled off and wants to try radiation beads (Y90) in his liver. Upon review of the MRI he is still not a candidate for surgery. We are waiting for a call from hospital to get him scheduled for the beads which is two out patient procedures 4-6 weeks apart. They do one lobe in the liver at a time. At about 6 weeks after the 2nd one they’ll scan and see how things look. We are celebrating getting rid of chemo symptoms for a nice little stretch. Please pray for his hands and feet to recover from neuropathy (numbness) and his taste buds to return along with his appetite. Down the road we could restart chemo but for now they are focused on targeting the liver and continue to make progress. Of course all of this will be scheduled around baseball and soccer. We have 3 out of town weekend trips for soccer in a row then 3 in June so we don’t have time for cancer!

We had an amazing Easter weekend celebrating Russell’s confirmation! We are beyond blessed, beyond proud of these brave kids of ours and focusing on positive aspects of this journey while asking God to show us his plan and help us be obedient in trusting him fully.

T-minus one week to go

*edited

I’m adding this link to a talk by Melody Ross.  God led me to her classes 9 years ago when I was in the darkest hole EVER and her Brave Girls Club literally saved me!  I did an art therapy class and it filled up my emptiness and helped me to find myself again.  ANYWAY, I seek her out because everything she creates is GOLD!  It is unique, it is therapeutic and really helps no matter what mind space I’m in.  Look around her YouTube channel and watch what looks interesting, I am listening to this one today to help ward off my pre-chemo and pre-doctor appt anxiety.  Thank God it is Easter weekend so I can just float around in my faith with everyone and try to push out that anxious feeling that creeps in.  https://youtu.be/YhstYz9_6xY

The reason this blog was abandoned was because of my crazy kid schedule and remains true! Brad is feeling good, bloodwork has been good. His colonoscopy was awesome with no evidence of tumor and he will have an MRI of his liver on 4/18 to get better picture of how it’s looking. We are hella busy with all the kids stuff…baseball, soccer, prom, KU events…no time for cancer actually! Prayers would be much appreciated for Russell as we celebrate his confirmation this weekend and for our appt on 4/22! Happy Easter! He is Risen and never forget God has an amazing plan for you! ❤️

Cruise Control with a few Pot Holes

Last Spring Break Hurrah watching the Jayhawks

Happy Spring everyone! Woah we’ve had a doozy of a Winter and are so ready for warm weather! We had a relaxing Spring Break which started at the Sky’s cabin and ended with a FamBam Jayhawk adventure. Thanks to generous friends I had my own Spring Break in New York City and I have to say my first trip could never be duplicated! It was unreal! We’ve been so fortunate to be gifted some really big gifts since Brad’s diagnosis and this is definitely one for the record books! I came home filled up and ready to take in our notoriously busy Spring/Summer and a big appt with our Doctor.

Scans always trigger stress…it just does…we tell ourselves there isn’t anything major that will happen because we know they are just to check on success and that has been consistent with every follow up scan.  Brad’s CT showed continued shrinkage in his liver which is always great news.  They decided to do a colonoscopy to get a better look at the origin tumor and it literally has melted to a normal looking colon texture.  So wild and wonderful!

On 3/25/18 we met with Dr. Pendergrass and he is very happy with how things are progressing and responding but did say that liver is the issue and ordered a MRI to get a better look at where the tumors are and if there is becoming an option for surgery.  The challenge is they can’t just pluck out all of them and there are in both sides so they can’t just but off the spot.  The great thing is that if the colon tumor melted as it did these tumors could keep shrinking as well.  We are ONLY 6 months in from diagnosis as of 3/25 and 4/3 from first chemo treatment.  That is so early in cancer treatment and Brad has really come so far.  He is pretty much on cruise control for the next 3 treatments and we will meet after the MRI to see what he thinks about that.  We moved treatment to Mondays which worked out pretty well so far.

Seems like each month brings new side effects and this month we’ve been dealing with adjustments to the diabetes diagnosis and meds.  Brad’s bloodsugar dropped to what is a more healthy level but he felt bad which is a strange catch 22.  So really what the goal is to manage it and bring it down but not get too strict.  He needs a certain amount of carbs to help cushion all the meds he’s taking and will hopefully get used to the ups and downs of that blood sugar.  What is the STRANGEST thing is this man was walking around with a liver that filled his chest… full of lime size tumors, blood pressure at stroke level in the 190s, pre-diabetic blood sugar and walked around like everything was fine until out of the blue he started feeling bad.  His weight, blood pressure, blood sugar and blood work across the board is looking so good but obviously with all the meds, chemo and everything going on in his 6 foot test tube body he doesn’t always feel all that great.  I just wonder…is it mind over matter?  He believed everything was fine and blew off any symptoms he felt and never complained, always gets up early…I call him the robot because he just doesn’t slow down very often.  He has a very strong ability to ignore anything that is off but seems like blood sugar is one that hits him pretty hard. This weekend was rougher on him but it was ok because baseball got snowed out and cancelled so we had a slower weekend with time to get organized, clean up the house and get rested. He felt pretty puny on Sunday so I declared it a recliner day for him to relax.

Thank you for your continued prayers.  We are gearing up for some crazy calendar juggling and ALL the family is coming for Easter to celebrate Russell’s Confirmation. I’m super duper excited!  I LOVE when all of my siblings, cuzzies plus all of the kids’ grandparents can be together at the same time. What a huge blessing!  I am beyond grateful for all of them setting aside their own crazy schedules to gather together.  It will be a glorious Easter celebration!

Sidenote–we survived another Touch of Silver Dance Team tryout week for Whitney.  It is always so stressful because we want all of the girls we know trying out for the first time to make it but it is a very competitive squad.  Some made it, others didn’t.  We are excited to get the new season started and it will be kicked off next Tuesday.  Senior year for Whitney is coming in hot!

Russell’s baseball team won their first tournament of the season by a long shot so we are officially bumped back up to AAA.  We have a great team, great kids, great parents, I’m so excited for the season!  There were a few kids including Russell with some doubts about their abilities going into the season and the big success erased any doubt and really bonded the team together.  Brad and Russell were in their element and I absolutely enjoyed watching them enjoy every second.  It was cold but honestly I don’t even remember that part.  Hoping for gorgeous weather the rest of the way!

Prayer requests:

Carter has been struggling with stress at school.  I’ve been trying to help him get some extra help to get over the hump but Lord Jesus I hate to see him stressed out! Please lift him up.

Brad has some nagging symptoms that have cracked his armor.  Please pray for these to resolve and for him to feel tip top shape and feel as good as his blood work has been showing on paper.

Whitney and Russell need some extra luck and prayers to finish strong with their grades.  They have some high 80s which they know drives mom crazy!  If you are gonna get an 88 you might as well get a 90!  Am I right?!?  I know they are both trying so I don’t bug them too much.  Whitney has her Proms to distract and Russell has practice or a church event every day with no breaks so he’s a busy guy.

Brad and I can both use prayers for our focused and successful results at work.  Both of us are so busy but being in sales means we are always playing the odds to be successful and going into the busy Summer we are hoping to celebrate our successes.

Above all we feel so much love, we have been given some incredible gifts over the last six months to help us keep life as normal as possible and for that we can never say enough thank yous.  My recent New York trip was a trip of a lifetime with my HS bestie and while I was tentatively nervous it was the most amazing time spent! Her husband was so generous to give us the opportunity to enjoy the city and each other.  I still can’t believe it really happened! I walked in the New York City St. Patrick’s Day Parade as the FIRST THING I DID on my first day! I mean who does that besides Ferris Bueller?!?! Oh and then followed it up with the Big East championship at Madison Square Garden! I mean holy wow!

 

Focus on Happy and please forgive my Mood Swings

We met with Big Nanner today, Brad’s beloved Nurse Practitioner.  She almost mesmerizes him with her excitement that he forgets to listen to what she says.  Her enthusiasm gives us comfort and she is so positive in her praise for great blood work, says he looks good, she confirms the fact that he “feels fine.”  Today opened the door to changing things up so that he can feel as good as possible.  For instance, he’s had hand and foot pain that we’ve narrowed down to being from the 5 FU and not neuropathy.  She gave him a cream and cut back on the 5FU dose by 10%.  She also said this symptom will get worse when it warms up which sounds kind of serious since baseball and soccer seasons are fast approaching.  She told him he doesn’t have to power through this stuff, there are ways to make him feel better!  yay! Praise Jesus!  This is what I’ve been wanting to discuss for awhile without being perceived as “giving up.”  So thank you to everyone who prayed for what was on my heart the last month…quality of life vs fighting hard.

As for the scans, there has been additional shrinking of the masses in his liver so the chemo is working.  There are still too many to narrow down to the option of surgery and would only consider that if there were a few that were growing really big and they needed to be removed.  Now it seems like they are just kind of there like a heart disease or some other kind of chronic disease that you manage.  His blood counts are great in every area and we are just getting started to monitor his glucose. Brad is having a colonoscopy next Tuesday to get a better look at the colon tumor and decide if it makes sense to remove it.  What people keep asking and pushing for surgery don’t consider is the science behind cancer surgery.  It is all about margins, pre and post conditions of the organ you are cutting on and what else is in the body.  There has to be a means to an end and if it is cutting to be cutting I’m definitely not on board. {I don’t for one second think our doctors cut to cut but I get the question of “what about surgery” and that isn’t my favorite option}  The doctors would also weigh the risk of 6 weeks off chemo to prepare for the surgery.  When Brad missed his chemo in December he started to feel “cancery” and *seemed* to be heading back down the path he was on when first diagnosed–weak and sickly.  The thought of leaving his body unarmed to be attacked by the cancer without any chemo for six weeks scares me.  Secondly,  what does cutting a piece of his colon out mean.  Will it mean a colostomy bag?  Will it mean him in the hospital for awhile then bedrest missing his favorite season of the year?  Could it mean other things will come up and be more problems to deal with?  Our doctor and team will evaluate his overall health and if it will improve post-surgery.  I’m not even close to being medically trained/educated but I’m here to tell you Brad Woods does not want and part of any of that!  The man doesn’t even want to commit to a Halloween costume that he can’t immediately take off.  He does not want to LOOK, FEEL or ACT different.  His current health is good, he’s managing his side effects, blood pressure is so much better and our new adventure of diabetes is starting.  His blood work looks good, he feels good, he can sleep away a lot of the side effects.  I have faith God and the doctors will figure out his path and I’m voting for a Hard No! haha!  I think you all know where I stand.

Who knew Cancer lingo had some PC to go with it? I’m learning that “you look good” is an interesting comment. It kind of has a back handed tone of insinuating the treatment must not be that bad…impaired to others who look very sick. “You can beat this” “fight the battle” “how many more treatments” are all hard phrases to process when your cancer was deemed inoperable and incurable at the start. Anything can happen and we will always keep hope alive but it’s just tough for those concepts to be considered the only success. For people trying to live a “normal” life during treatment of Stage 4 cancer the battles daily are much more real. Brad worked 45 hours this week and 5 were unpaid to try and serve his mortgage customers. That was a huge victory the week of chemo! News of tumors shrinking by a centimeter is a big win 5 month into treatment. Winning a battle with insurance to process one EFFing claim so our prescriptions will be free/covered…now that’s a win! Making it through an entire weekend of a Dance State Competition without having to say no and stay in the hotel is a victory. Sometimes being cancer free isn’t really the focus or at least not the daily focus. There are weeks where we both don’t have a single bit of energy left to empty the dishwasher or make a sandwich. Brad says he is “real tough” and he is getting tougher by the week.

Thank you for your prayers. They mean a lot!

My heart today

I see you smile and your true joy.

Your bright face in the morning gives me hope.

I see the tear roll down your face and I sink.

What are you thinking boy?

Are you tired of this battle God has given you?

I see our children happy and am relieved.

We can do this somehow.

What is going on in there boy?

What are you thinking about?

I forgot you had cancer and it was bliss.

I feel so strong

And then I fall apart.

What if I can’t do this?

What if you leave without me?

Well I will figure it out, don’t worry.

I’ll make it work somehow.

Out of the blue our angels step in.

Literally when I feel like I’m going to burst.

They show up and take off that rock that makes me feel like I can’t breathe.

I see the separation of realities, yours and ours.

I’ll fight what you are fighting our whole lives.

What are you thinking boy?

Are you tired of this battle God has given you?

If you leave I’ll love them double for you.

I’ll never let you down.

I’ll never let them down.

Quick Update–#10 and 3/5 Scan

For some reason the last doctor appointment felt extremely stressful.  It ended up being a quick check in, doc said everything is looking good on his labs and the next scan is going to be on 3/5 then treatment #11 on 3/6. Brad was also put on insulin for diabetes.  The doctor said he was likely pre-diabetic and the stress of the chemo threw him into full diabetes. Brad’s hands and feet hurt for about 3-4 days pretty bad after treatment. This is from Oxaliplatin.  The only way to relieve it is to stop the giving that medicine in his cocktail and he doesn’t want to do that.  When we talk to the doctor next I’m going to ask him if there are options regarding only having it administered every other time or something to help lessen the accumulating affects.  Baseball season is going to be a struggle if he can’t walk and use his hands.  He says he’s “real tough” so in typical Brad style I’m sure it will have to get unbearable before he’ll agree to change things.  Nothing major came from the appointment but geez we stressed ourselves out on that one.

We had a fun Valentine’s Day and cracked up exchanging gifts.  Brad took me to a new Thai restaurant on Valentine’s evening and it was really good but his food was way too hot so he was sweating, crying and beat red!  He liked it all the same.  He also is very excited about getting handicap placards for our cars.  That will be so nice to get him through the rest of the Winter and save his feet from long walks getting to our kid stuff and into work when he goes.  With such a brutal Winter we’ve been so glad he can work from home.  His breath is taken away, face and hands frozen and hard to breathe in extreme cold.  It is better for his neuropathy to just stay inside and not risk getting frozen to the bone.

Brad’s very sweet card to me.  I’ll save it and read it when I need a little extra strength.

GI cancer means…more… farts…so this was completely appropriate and made him laugh/cry.

Please pray for his medicine to keep doing it’s job and for his scans to give us some guidance for the path that will take us through the Summer. We are really looking forward to lots of fun sports trips and adventures.  Brad doesn’t want to hold us back and will be at everything.  I don’t want to rush time to Summer because that will mean Whitney’s Senior year is quickly approaching and UGH that is just is too much.  I’m excited for what is in store for her because she’ll participate in a medical career focused program and all the fun Senior milestones.  I push and pray for all the kids to try their very best in school.  It is way too easy to get distracted so I “nag” and plead for them to work hard and hope for the best.  Hoping for a successful semester for them all.

Thank you for your prayers, they lift us up on the darkest days.  I’m feeling light and airy today so this is a good day to write 🙂

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We will DIY these @helloheidiwallart signs for their rooms.  They loved them!

Guilty!  We tend to give each other things we want for ourselves…

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

 

Go Chiefs!

Brad is not a jersey wearing sports fan but decided to order one online for the Playoffs. So far the notification says delivery will be some time in February. So his daily joke after he checks the mail is that his jersey still hasn’t come…too bad but hopefully it will be enjoyed when we celebrate an amazing season!

We enjoyed a lovely breakfast the morning of the AFC Championship game and before Carter’s send off back to KU. I think he had a good break, his tank got filled up, he seemed much healthier and excited to get back to his friends. We have high hopes for good grades and good news from at least one internship application.

This week will be chemo #8. I expect a worn out dance dad but hope he will get to see Whitney dance at least once this weekend at her competition. Our schedule is going to ramp up fast so I just hope we can keep all the balls in the air. I’m feeling hopeful but also a little anxious. The cure for any worry is cheering for our kids and we have lots of that coming up! Can’t wait!

Brad and I enjoyed his company’s holiday party this weekend. It was nice to see all the people who support him and mortgage people are always a fun time.

Can you outrun a Mountain Lion?

In case you’ve ever wondered…………….{this is borrowed}

“What’s it like to go through cancer treatment? It’s something like this:

One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my wife – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “DAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY HUSBAND,” and the mountain lion punches your wife right in the face. Now your wife is rolling around on the ground clutching her nose, and she’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your wife in the face. And your wife is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “Screw this mountain, I never wanted to climb it in the first place.”

And now I begin my second trip up this Mountain 😠😠😠
“Words of a FIGHTER” -Caitlin Feeley

This week was crazy!  We were ready for Chemo on Wednesday 1/9/19 and anxious to kick off this year of battle.  The plan was to meet with Big Nanner our NP to catch up, talk about some symptoms and then get chemo.  In that meeting we talked about his blisters on his feet that had peeled off and got her recommendation for taking care of his feet. Talked about rib pain, she was so happy with most of his test results and the weight he gained.  She raved about how he looked great.  He mentioned a sore in his mouth and ***insert record scratch here*** she looked it over and was very worried because she had a patient who had a really bad jaw infection.  From the look on her face that did not end well.  She said she would likely take away Avastin- the tumor killer- since it seened to be affecting his mouth.  The action plan was to go to the dentist next to get that checked out and then we’d proceed.  Big Nanner addressed his low ANC {which is the new White Blood Cell growth} because it was low again.  That number is why he didn’t get chemo all of December until Christmas Eve.  She said the financial lady was checking into approval for the shot called Neulasta that would force the production of new WBC and needed approval since it was $14,000!! Woah magic in a shot apparently!  With that shot his numbers would go from a low of .80 to 25000!  While it is an answered prayer the side effects will be large bone pain…I’m hoping that will be mild because he’s really had very little pain during this process!  Our meeting started out on a high and ended with two action items before he could get treatment and come to find out Blue Cross was in an all day training so there wasn’t anyone to approve the shot…yeah…no one to approve a shot for a cancer patient needing treatment {not bitter about that at all….grrrr}!   It was a confusing flurry to leave with the slow realization that we were actually sent home again…damnit!  They said something about coming back next week and we could rprot back after he saw the dentist.  We were both a little stunned and a little freaked out by the mouth thing and how much of a delay that might be.  Thankfully the scheduling lady, Leslie, overheard the situation and said we might be able to come back this week but first we needed to go see the dentist.

With the rejection comes the walk of shame out of the clinic. We stand up, I fold up my blanket, grab the 3 bags and my coat and we shamelessly walk out with our tails between our legs.  It is a collective bummer when someone gets sent away because of bad numbers, everyone feels great empathy for each other no matter what is going on because we all root for each other.  I know we both were like “WELL FXXK this is how we are starting this year?!”  Brad got on the phone and the dentist was ready for him to come right then so we raced over there straight from the clinic.  Thankfully he was cleared by the dentist for anything major and just had a little bone spur removed.  GREEN LIGHT!  I called the clinic and said the dentist said his mouth was fine and could we come back, it wasn’t even noon for God’s sake! They needed a fax from the dentist and still needed that approval for the shot. They couldn’t give him the chemo if there wasn’t shot approved and they didn’t want us to get stuck paying $14k either.  So we went home.  Brad was not happy…during the conversation with Big Nanner she also expressed concern for glucose in his urine and wanted a diabetes test.  She said he could just do that whenever, it wasn’t pressing.

The next day I went to work ready to throw myself into getting stuff accomplished so I wouldn’t have to think about the frustration of the day before.  After a few meetings I called the nurse and Leslie the scheduler called me right back to ask if we could come NOW!  While I was driving back home Brad jumped in the shower and we met at the clinic.  I walked in to a very frustrated husband.  He was mad at the situation, mad at getting kicked out because of a dumb mouth thing, mad that he rushed over only to be sitting in the lobby for 20 minutes and just flat out over it.  It was no surprise when his blood pressure was elevated but they said they would treat him.  He got all hooked up and the pharmacist came up and said, “I need another blood pressure reading.”  That is code for “make that man relax to get a good reading or I’m raining on your chemo parade today.”  The manufacturers have strict guidelines and blood pressure is one.  He’s had to fight that battle a few times and is learning how to make himself relax enough to lower it.  He did a very good job and mediated for a few minutes and got a “beautiful”
reading.  We had another start/stop to make sure the shot was approved…it was so the green light stayed lit.

From all that we’ve gathered the same plan they gave us at the end of November after the 2nd scan is that they will go for three months then re-scan.  He needs to make it through the next 2 and 1/2 months then we get to see where we are.  For now my prayer requests are for him to keep feeling “fine” with minimal pain and side effects.  I’m glad we have a new weapon on board with the Neulasta shot but with that means more brutal chemo effects.  I have faith God is 100% in control and guiding us down this path hand in hand.  We have a lot of good distractions with the kids doing all of their fun stuff.  Whitney has dance competitions including State on Feb 22 & 23 and Russell will have soccer tournaments in town and out of town in St. Louis and near Chicago.

Have a good weekend, we are getting snow and look forward to hunkering down to watch the Chiefs in the NFL playoffs!  Carter and Russell are in charge of Brad’s pump removal at KU Med tomorrow while Whitney and I work.  That should yield some funny stories with those 3 musketeers taking on that mission!!