No Trial is Wasted - July 31st

We made it to Chicago. We have an early morning of tests and scans tomorrow. We will meet with Beth’s oncologist mid-morning to go over the results. Beth mentioned that she expects her tumor markers to be up again.  Since the chemo was not working and we chose to stop treatment there is nothing fighting the cancer. We are just hoping and praying that her antibody infusion she got 3 weeks ago has slowed the growth down. The last visit, 3 weeks ago, showed her tumor markers had doubled. If that is the case again tomorrow we may choose to not continue the antibody infusions as well.  

Lately I have been listening to General Conference talks and BYU Devotionals and am humbled by the wisdom and guidance that we have readily available to us with just a few clicks of the computer or smartphone.

I was listening to a talk today and Elder Dallin H. Oaks explained how the works of God can be manifest in us if we approach adversity with faith in the Lord:

“We are sent here to be tested. There must be opposition in all things. We are meant to learn and grow through that opposition, through meeting our challenges, and through teaching others to do the same. … The Lord will not only consecrate our afflictions for our gain, but He will use them to bless the lives of countless others.

Another quote I read the other day really hit home as well.  

Apostle Orson F. Whitney (1855–1931) of the Quorum of the Twelve Apostles, explained: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God … and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

I am thankful that we have inspired leaders that can help put life into perspective and help us through tough times.

We love you all...

#BattleTogether

A “Little House on the Prairie” Type Casket - July 30th

This afternoon Beth said to me, “It’s days like today where I think, ‘Wow, 4 months is a long time.’” Beth had a pretty rough day today. It started with her falling. It wasn’t a big fall. She got up this morning to use the bathroom and her legs gave out because they are so weak.  She said, “Today was one of those days where it was difficult to even just to roll over”.  Beth described it as, “Not so much pain, but just extreme discomfort throughout my entire body, all day”.  My mother convinced Beth to take two pain meds to help her manage and Beth obliged. Beth is always reluctant to take even one pill for pain and when she does take one it’s a sure fire sign she is not doing well. For her to agree to take TWO pain pills is just flat out unheard of.  

Once the pain pills kicked in I was able to have a great conversation and really connect with her. Because Beth never really feels well and is stubborn about “drugging” up all the time, it is sometimes hard to connect because she is concentrating on not being in pain. Today, once she was relieved of pain, we were able to talk.  (Side note: If this was me, I would be popping pills like they were Skittles).

A couple of interesting things that came from our conversation today.

1. Beth wants a simple casket.  A “Little House on the Prairie” type casket. I have never seen Little House on the Prairie” so I had no idea what she was talking about. She basically is saying she doesn’t want me to waste a bunch of money on some over the top casket.  She wants a plain and simple casket.  There is sweetness in simplicity.  

2. We talked about her thoughts on embalming and the effects on the environment (remember Beth is high as a kite during these conversations). I never knew someone could have such strong feeling about the practice of embalming.

3. Beth mentioned the type of flowers she wants at her funeral.  She wants Peonies, Hydrangeas and Ranunculus. Again, I have no idea what those are. I am not even sure if those are real flowers (she had to spell them for me).  She may be trying to make me look stupid here.

4. We talked about how much say the kids should have regarding the funeral.  Referring back to Beth’s strong feelings about embalming, she did mention that she would consider it if we thought it (an open casket) would help the kids in the grieving process. We talked about if we should ask the kids what they thought.  Just the thought of sitting down our kids and talking about open vs closed casket seemed weird but could it be helpful to them to talk about these things? What if we had a closed casket and the kids wanted differently? We really have no idea what we are doing with all of this. It’s questions like this that make make our heads spin. It’s overwhelming at times.  

Tomorrow we leave for Chicago for her 3 week check up on Monday.  We are praying the antibody infusion is doing it’s job and slowing down the cancer growth. We are praying that Beth can get some relief of her symptoms that have been holding her down. We are praying for time. We are praying for inspiration from above to help us answer some of the questions and decisions we will have to make in the future.  

One last thing. A request of sorts (mainly for our local friends). Each of the kids on separate occasions have expressed how they struggle when people ask them "How is your Mom?". They don't know what to say and in Caroline and Lily's case, they told me that they "just don't want to talk about it".  It's gotten to the point where Caroline and Lily said they are dreading church tomorrow because they know everyone is going to ask about Beth.

This is a tough situation because we know so many people really do care and really want to know how Beth is doing but I am hoping you all can help and refrain from asking the kids about Beth. I, on the other hand am free game. Please feel free to me call, text, Facebook message, whatever, for an update. Also, there is this Blog that I have been trying to update daily that is hopefully giving people the information they are looking for.

I hope this doesn't come across the wrong way.  We appreciate all of the love and support. We know that when people ask they are expressing love and concern for our family.  I'm just trying to help my kids as they deal with all that's going.  This might be preaching to the choir here because if you are reading this it means you most likely read the blog somewhat regularly and would be less likely to ask one of the kids how their mom is doing.  

We love you all.

#BattleTogether

Don't Touch Me... Get Away! - July 29th

Beth feels sick.  Beth is tired. Beth still has cancer. Beth slept a lot today.  In other words, just a normal day.

So with no real updates, here are some random things that give a little insight into what it’s like in our house these days.  

Each morning I ask Beth, “How are you feeling?”.  This morning she answered with, “Maybe you shouldn’t ask that question anymore”.  I took that as, “Why don’t I just save you time and just tell you when I AM feeling GOOD”.  

Each morning I rub Beth’s bald head. Her perfectly shaped bald head. It really is one of my favorite things to do. As much as I love her smooth and round bald head, I am excited to feel more and more hair growing in each morning.

Because Beth’s cancer makes her feel very hot all the time, she needs the AC to be cranked up to around 63 degrees. It is so cold in our house that we could hang meat in our living room. As I type this my fingers are going numb.  

I always can tell when Beth has hit the pain meds.  If she is heavily medicated she will get very sappy and weepy. I will be walking through the living room and she will all of sudden say “Come here honey” and grab my hand and say, “I just love you so much, how did I get so lucky?” and she will usually start to tear up. That is my sign she is high on something. If she is not on pain meds, she is usually like, “Don’t touch me, get away”.  

I think I am going to put a Fitbit on Beth and see how many steps she takes in a week?  Any guesses?  I am going with under 300 steps.  FOR THE WEEK!  I may be way too high though.

As if we don’t have enough medication in our house already.  The two blue bottles below are prescription meds for OUR DOG!!  Poppy tore her ACL and will need surgery.  Can’t make this stuff up.

One silver lining thing about cancer is Beth does not have to be part of Ben learning how to drive.  He has only had his learner's permit for about a month so far and he has done well for the most part, but at least once a trip I scream, “HAVE YOU EVER SEEN ME DO THAT WHILE I AM DRIVING”.  

Tomorrow, Beth is going to try and attend the funeral services for John Bigelow.  We just love that family.  We hope she is feeling up to it.

We love you all...

#BattleTogether

John Bigelow - July 28th

Nothing new to report today.  No major changes, just lots of rest.

A month ago the doctors gave Beth four to six months to live.  That time frame means nothing to Beth. Beth has already statistically beaten the odds and she is planning on beating that number again.

Someone we look to as an example of strength and fight is a man we met about 1 year ago. John Bigelow and his wife live in Northeast Ohio and they are the proud parents of 5 beautiful adoptive children. John fought cancer the previous year and then last fall found out his cancer had returned and spread to his lungs. When we met him in October he was not doing well and his health was declining rapidly.  We met this family through some mutual friends and by a small miracle of circumstance and timing, a local charity event, the Meadows Turkey Bowl found out about this family and stepped in to help. The Meadows Turkey Bowl, a Thanksgiving Day charity backyard football game would raise over almost $100,000 for this family whose sole bread winner was battling for his life.  

John made it a goal to make it to Thanksgiving so he could attend the game and give his thanks to all that were involved. As his health continued to decline we were worried that John was not going to be able to make it to Thanksgiving.  Two nights before the game he was admitted into hospital.  Many prayers were answered when John’s doctors allowed him to leave the hospital and attend the game on that cold November morning.  John literally had to be carried to and from his car but he made it to the game and enjoyed a very special moment with the players and the organizers of the charity event that helped his family.

As John and his family left the field to go home I remember thinking that his time was short and I wondered if I would ever see him again.

Then something special happened, John refused to give up. He kept fighting. He wasn’t ready to move on.  He wanted to spend as much time with his kids. He wanted to show the doctors they were wrong.

He went on to live another 8 months. 240 more days.  

John passed away last Sunday.  In talking to his wife, while she is mourning her loss, she is so grateful for the extra time the Lord gave them. Each day was truly a gift from above.

John showed that while doctors give their best educated guess, it still is just that, a guess.  

John Bigelow has given Beth much hope.  As tired and physically beaten she is, she is not ready. She has so much to do, so much yet to accomplish. Thank you John for showing it can be done. Thank you for your example of faith. Thank you for your fight.

Tupac Sha-Ned - July 27th

We are back home.  A few Beth changes to note today.

Beth slept a lot today. She slept all morning and most of the afternoon until we left Indiana for home (around 2pm). She then slept most of the car ride home. When we pulled into the driveway, Beth just sat in the car not moving. Normally she is dying to get out of the car and into bed so she can lay flat. Today, she was so exhausted that she just sat in the car for about 10 minutes before we finally forced her to come inside. As we were helping her out we noticed her skin was cold and clammy - she has never been like that before. She has not eaten anything today and we are hoping that as well as the 2,000+ miles of traveling over the last 9 days is why Beth struggled today.

Despite how hard it was, Beth is so glad she was able to make this trip. Seeing family and friends meant the world to her.

Beth loved spending time with her dad

One of the fun things lately has been seeing so many of Beth’s friends digging up old school pictures and sharing them with us. It has been fun to relive these memories. Our friend Erin found this picture below of the three of us in Vegas doing the SkyScreamer at the MGM Grand. We showed Ben this picture but didn’t tell him what we were doing. He asked, “What in the world are you guys wearing?” We told him that those outfits were the style in 1997 and that everyone wore them. Ben believed us and thinks 1997 was full of people wearing crazy looking overalls.

This is when Tupac Sha-Ned was born

 

Do I Look Yellow to You? - July 26th

Beth’s feet are back to normal (well, except for her kickstand toe).  The swelling was all but gone this morning.  We might have overreacted last night after Googling what swollen feet meant combined with cancer. There were lots of results that mentioned, “end stages of liver cancer”, “liver failure”, “final symptoms”, etc.  Totally freaked us out.  

While swollen feet can be a sign that something cancer related might be in play, it also could just be a side effect of traveling 13 hours in the car on Monday and her not walking around much during those 13 hours (I think she only got out of the car once during the entire trip).  

As we read more posts from our Google search we were a little relieved that there are other symptoms that are usually present in people on the verge of liver failure.  Beth has some of them, but not ALL of them.

Jaundice

One of the liver's many functions is to break down the components of old or disfigured red blood cells. The chemical bilirubin is released by red blood cells and broken down by the liver. If the liver is unable to expel bilirubin or the red blood cells break down at a rate faster than the liver can keep up with, there will be yellowing of the skin, whites of the eyes and the underside of the tongue. When metastases invade normal liver, the decreased number of liver cells are unable to keep up with the metabolism of bilirubin, and it builds up in the blood.

Beth does not have any of these symptoms. Beth did ask my mom and I today - “Hey you guys will keep an eye on my skin and eyes and let me know if I start to turn yellow, right??”

Increased Abdominal Girth

The liver synthesizes many proteins for the blood. Some of the proteins regulate the fluid levels in the body, particularly by keeping fluid in the blood vessels. If the liver fails, these proteins are not made, and fluid leaks out from the blood vessels and into the surrounding tissues. In the case of liver failure from cancer, the decreased number of liver cells cannot synthesize enough proteins, and fluid leaks into the abdomen. Fluid build-up in the abdomen, called ascites, leads to increasing abdominal girth, nausea and vomiting.

Beth abdomen is swollen and very tight and has been very painful.  She has had nausea and vomiting symptoms for a while now.  

Problems with Kidneys or Lungs

The liver plays such a major role in the body that without its proper function, other organs may begin to malfunction. In hepatorenal syndrome, liver failure leads to kidney failure, with increased fluid buildup in the body, weight gain, swelling and decreased urine output. In hepatopulmonary syndrome, dysfunction of the liver causes dysfunction in the lungs, which can leading to breathing complications. These issues may be compounded with cancer if metastases have also spread to the kidneys and lungs further compromising their functions.

I don’t think we are too worried about her kidneys or lungs just yet. Beth for sure is not gaining weight and the swelling seems to only be in the abdomen (aside from the one day of her feet swelling).  

Bleeding Disorders

Other proteins made by the liver work to regulate bleeding. The proteins undergo a series of chemical reactions to stop bleeding once it has started. In the case of liver failure from cancer, the decreased synthesis of these proteins from the invasion of tumor cells makes it harder for the body to stop bleeding. Once bleeding has started, it may take longer to stop the bleed and a transfusion with blood products may be required to replace the missing proteins.

Another symptom Beth has not experienced.

Confusion

Since the liver helps to clean and detoxify the blood, toxins can build up in liver failure with cancer. One toxin that has been linked to confusion, sleepiness, and disorientation during liver failure is ammonia.

No worries here yet either.  Her confusion is mainly caused by her son’s eating habits, Lily’s choice in outfits some days and why on earth would an MVP caliber player (top 2 or 3 player in the league) join forces with one of the best teams in the NBA after losing to them in the playoffs???  Those are her thoughts, not mine.

So, we all feel a little better now that we had time to do a little more reading up.  Still on high alert and praying for increased time though but not freaked out like last night.

Tomorrow we leave Indiana and head back home to Ohio.  As we get closer to our vacation ending I am saddened.  This will probably be the last trip Beth will physically be able to make.  Traveling is just too hard on her. I take that back, we do have a trip to Chicago on Monday for Beth’s regular 3 week check up.  Depending on how she does on that drive we may chose to switch doctors from CTCA to a local doctor to spare her the travel.  Beth is not at all happy about switching doctors to anyone but CTCA.  

Beth not being able to travel anymore also throws a wrinkle into my efforts to help Beth fight cancer emotionally.  Over the last 18 months I have strategically planned trips or vacations for her to look forward to, to set her mind on fighting towards.  After each trip, I would casually put the idea of the next trip that she could focus on getting too.

There is no next trip planned.  I am worried about that.  I am worried about what short term event she is going to look forward to. Maybe I’ll break the news to Ben and tell him I am taking Beth to Cavs Opening Night (Championship Ring Ceremony) this fall. Maybe that will be her next event to look forward to.

Freaking out. July 25th

Sorry for the double posts today.

I really hate Google. I'm laying here in bed getting completely freaked out. I realized that I am no where near prepared for what is about to happen. Not even remotely close. I'm usually pretty level headed and take one day at a time but tonight I am on the verge of an anxiety attack. I'm reading webpages titled "End Stage Liver Cancer" and freaking out because Beth has every symptom listed. What is going on???

I'm sorry. I just needed an outlet to help me from going insane. 

Tomorrow will be better.

I Hate Google - July 25th

Very tired, so we'll keep this short. We made it to Indiana. So good to be with family and to see our friends. Our 8 year old nephew gets baptized tomorrow and we are so happy we can be here for that.

All I will say tonight about Beth is that she woke up this morning with extremely swollen feet. She called her doctor and they gave her a prescription for a diuretic to help with the swelling. She didn't explain what the cause was. Do yourself a favor and avoid Googling, "Cancer, Liver, Swollen Feet".

I will update everyone tomorrow more on Beth's health.

We love you all.

#BattleTogether

The girls really miss Riley

The Poskes had these #BattleTogether rocks made for us

We have some incredible friends in Indiana 

Count Your Blessings - July 24th

Greetings from Nashville, TN.  We were able to knock out almost 800 miles of the 1,100 mile trip to Indiana. Beth did great with 12 hour car ride but is glad to be in a bed.  

Beth said I need to slow down with all the “bum everyone out” posts, so we will take a break from cancer talk and quickly recap some of the great things that happened during our trip in Florida.

1. We got to see my brother, Chad and his family. It was so great to spend time with them. They live a few blocks from the beach and we spent A LOT of time there. We are #LeftCoast4Life people but I could for sure get used to the warm ocean water of the Atlantic.


2. Helped my parents move into their new house in Florida. It’s starting to feel like their home now that all of their stuff is moved in. I'm glad we were able to help them with the move even though my mom moved WAY too many blankets and coats from LA.  Absolutely no need for anyone in living in Florida to have that many blankets and coats.

3. Everyone learned to Stand Up Paddle Board. Great time.

4. Beth was able to see the kids everyday and hear about all of the fun things they did that day. Even though she was in bed 90% of the time in Florida, she loved having the kids check in each day and seeing them getting browner and browner from all of the sun. Also there were a few times Beth was right there in the ocean with us thanks to the wonders of FaceTime.

5. My mom decided to come back to Ohio with us. She has been a huge help. She is a retired nurse and she is great at making sure Beth is comfortable and taking all of her medication. I can’t tell you how great it has been having her with us.  Plus she has been great with the kids and helping around the house.  Such a life saver.













6. The kids loved having mango and banana trees everywhere.  All of the mango and bananas their hearts desired.

7. Ella and I went undefeated the entire time we were in Florida in the game Kan Jam.  #DreamTeam.

As sad as it is that my parents sold their house in LA and moved to Florida it is great to have them (and my brother) closer to us.

#BattleTogether

American Ninja Warrior - July 23rd

Today was an emotional day for Beth. Most days she approaches her physical limitations, doesn’t complain much and just finds a way. Basic tasks like getting up to use the bathroom, getting dressed (with help) or even just rolling over in bed are physically exhausting. Today, she was just completely fed up and vented to me this evening. She told me about a TV show she watched with the nephews. They were watching an episode of American Ninja Warrior. Josh Levin was on the course and he was racing through the obstacles and had gone further than anyone else. He got to the last obstacle and was already physically exhausted. He had to climb the ‘invisible ladder’ and reach the top to finish the course. As he got within feet of finishing he was completely out of gas. He kicked his legs up with every last bit of energy and pulled himself up with his legs through the opening at the top of the obstacle and collapsed. He laid flat out on the ground unable to move for a few seconds before pushing the button to end his run. Beth related to Josh as he laid on the top of the obstacle completely spent. She said, “THAT IS HOW I FEEL AFTER I GO TO THE BATHROOM!”

Beth is upset that if someone walked into her room right now and said, “I will give you one billion dollars if you can do 5 jumping jacks”, she would not be able to do it.  She is upset when she looks at her TimeHop App and she sees pictures from 1 year ago of her backpacking or riding rides at Cedar Point. She is upset on how fast things went south. She is upset that she is missing out. Of all of the crappy things cancer given has her, she is most upset at what cancer has taken from her, her ability to use her body the way she wants.

Tomorrow morning we start the trek home. It has been a great trip visiting family.  Lily climbed in bed with her today and asked, “Mom, if you could go ANYWHERE in the next 6 months where would you want to go?”  Beth’s said, “I just want to go wherever my family is. I want to be with the ones I love most”.  Despite Lily being a little disappointed with the answer (she was hoping she would say Hawaii or Disney World) she gave her mom a big hug.

High and Tight - July 22nd

Not much new with Beth today. Her back is still sore but much better than yesterday. Looking like it was a pulled muscle. Beth is having a harder and harder time using her legs to stand up.  This morning she said she got up to use the bathroom, sat on the toilet and then spent 10 minutes trying to figure out how she was going to stand up. She said that she just kept thinking, “I wish I didn’t lock the door”.  

Tomorrow is our last day in Florida. We will leave early Sunday to drive to Indiana to spend time with Beth’s sister before heading back to Ohio. I tried to convince Beth to let me fly her from Florida to Indiana and have one of the kids (or my mom) travel with her.  She didn’t go for it.  We were having a hard time finding a direct flight and she was worried that if anything went wrong (delay or a missed connection or cancelled flight) that she would not be able to handle it. She already is concerned if she will have the energy and strength to handle getting off the plane and trying to make her connection. So, as miserable as Beth was on the drive out to Florida, she is choosing to drive home with us as it is less taxing on her body.

Beth’s doctors in Chicago told us that we should consider changing doctors to a local doctor for her injections and her 3 week check ups. Beth’s doctor was worried that she would not be able to physically make the drive from Ohio to Chicago anymore.  We have her scheduled visit to Chicago coming up on Aug 1st and we will most likely discuss changing doctors in more detail when we are out there.  

Funny story from yesterday. I needed a haircut and drove by a local barber shop. I walked in and sat down in the chair.  As the old man started he mentioned he was an ex-marine and use to cut hair in the military.  So needless to say he gave me a “high and tight” cut.  When I got home Caroline took one look and said with a very concerned look, “Dad, what happened to your head??”  She then reached out to touch the side of my head and said, “Did you do this because of mom?”  She thought I chose this haircut to show mom support with her baldness. Good stuff.