We have plans for tomorrow!

Ever since Christmas, when we received the news that my doctor did not expect me to live more than a year, I have been thinking about the mantra and if I needed to change it. It was difficult to think about how finite 6 months or a year seemed. There is a definite limit on those tomorrows.

But then I realized that this just wasn't my mantra, but Braden's and the kids as well. They will have plenty of tomorrow's that they will have to beat. I know that life continues on after we die and so I will have plenty of tomorrow's. I also know that through Christ I can have my family together after this life. I am grateful for my Savior and Redeemer who makes this all possible.

So I continue to say, "I am going to beat this. I have plans for tomorrow."

Love you all,

Karen

A Different Post

This post is a little different than the ones I normally do.  Normally I write about Karen, the kids or a project that I am working on for the family.  Today I am going to tell you a little bit about me.

Six years ago I weighed in at 275 lbs.  I was out of shape, stressed and headed for an early grave.  Today I am 197 lbs.  Lately I have been getting asked questions by friends and coworkers what my secret is.  I had started off by saying diet and exercise but that's not really the secret.  It was the answer I would give off the top of my head without really thinking about it.  I thought about it and then started saying motivation but that wasn't right either.

Braden and Karen - Thanksgiving 2009

Today on the treadmill I had some time to think.  Lately I have been staying away from the treadmill due to some feet problems but today all of my substitutes were taken.  In a way I am grateful for that time I had to think.  The conclusion I came to after 30 minutes on the treadmill is that the secret is patience (if you have ever spent 30 minutes on a treadmill you know it takes patience).  Patience with myself, with results, with life and challenges.  Success with most anything in life is not determined immediately, it takes a lot of time and effort.

Karen and Braden - January 2016

It wasn't one change that helped me out of my rut and on the road to being alive to take care of James and Rebecca kids after Karen is gone.  It was having the patience for a lot of little things to add up to big results.  Changes made over the span of weeks, months and years.  Eating better foods, not necessarily less food (though that helps) just more of better foods (that's how I try to think about it though I don't always succeed).  Getting out and exercising regularly.  Being willing to try something new (helps avoid boredom) for a while and see how it works and being willing to roll with it if it doesn't.  Everyone is different so figure out what does or doesn't work for you.  Not trying too many new things all at once.  Let a big change devlop into a habit before adding something new.  Starting slow and easing into a new routine.  Make corrections quickly if you get off track.  Getting to bed on time.  Finding ways to reduce stress or use it to help me out.  Pushing my limits and not being afraid of a little soreness.  Being grateful for what I have.  Living in the moment, but not at the expense of the future.  Taking time to spend with family and friends.  Setting long term and short term goals and then measuring them regularly.  Having faith that things will work out for the best if you keep trying.  That's not even the entire list, but it's getting late.

What it comes down to is that I couldn't have come as far as I have if who I am and what I value hadn't changed in that time.  Over time all of those little changes have added up to a new way of living.  Will those changes stick?  That's the big question for anyone.  It hasn't been a string of uninterrupted success and it has not been quick.  Real change is rarely quick.  I have had my ups and downs on this particular journey, but over the last six years my weight has trended downward.  After Karen got home from the hospital in 2014 my weight plateaued for a while (~225 lbs) and then started to climb back up (~245 lbs).  With Karen's support, and a little chiding, I was able to get back on track.

Karen has been amazing through this.  With all of her challenges she still has the strength to motivate and inspire me to be better.  She hasn't let the cancer beat her and is still trying to be a better mother, wife and person.  I know she doesn't have much time left so I try to cherish the time we do have.  I'm grateful for the help she is to me.  It's strange but the last few years, while they have been the hardest, have also been the best.  Would I live through it all again?  Probably not, because I hope and believe the next few years will be even better.  There will be more hard times but I know we can get through them if we're willing to change for the better.

Braden

P.S.  There was a talk from the October 2014 LDS General Conference titled "What Lack I Yet?".  Many of the principles I talk about here are more eloquently and fully expressed in it.  You can find it on lds.org by searching for, what lack I yet.

TIPS

This week was the TIPS operation that is supposed to help with the side effects of my poorly functioning liver. We went into the hospital at 10:30 am and had the procedure done at 2:30. There was another operation that pushed us back. It gave us lots of time to talk. I got back to the waiting area at 6:30. I was having a hard time coming out of the anesthesia since they gave me benadryl. That stuff knocks me out for days. ... It turns out that the doctor decided to go ahead and do the hemorrhoid embolization too.

The next day I had a CT scan so the doctor could see how the operation went. He said that everything looked great and he has high hopes for the future. We have to go back in a month for a check up. I was released to go home that day.

I am very happy to be home, but this whole taking it easy while recovering from surgery I'm not so good at.

We were given the OK to do chemo Monday and my blood counts are high enough. I'm just not looking forward to it.

I want to send out a great big thank you to all those that prayed or fasted for me and this surgery. I was fairly calm and I know it was because of you.

Karen

New Year - 2016

Life got a little busy for us after the last post.  Christmas was great and we were able to spend a lot of time together as a family.  It always amazes me at how willing people are to help and give.  In the days running up to Christmas we had at least three different people drop off packages, cards or gifts.  It is sometimes hard to accept help when I look around and see so many other people in need.  Allowing other people to help in a time like this has been a learning experience for Karen and me.  We are very grateful for all of the kindness.

The day after Christmas was relaxed and allowed us to catch our breath a little.  New Year's Eve was fun with more family gathered for dinner.  Our tradition of watching movies until we ring in the new year was modified in favor of allowing Karen and the kids to get to bed early.  New Year's morning I made a trip to the grocery store with Karen's mom.  One of Karen's Christmas morning traditions is fresh squeezed orange juice.  Since she didn't get that on Christmas I decided to make it happen on New Year's day.

Karen on New Year's Eve

January 4th Karen had another chemo treatment.  Two days later she ended up running a fever and not feeling well.  We had been planning to go to a company party together on Friday for our date night but I ended up going alone.  I am glad we are close enough to family that they were able to help out with the kids while I was away for the day.

Since Karen hasn't been able to get up and down stairs very well the kids bedtime routine has been adjusted.  It used to be that story time, scriptures and prayers were done in their bedroom.  Between prayers and being tucked in they would run back upstairs to give hugs and kisses to grandma and grandpa.  Now we stay upstairs until they are ready to be tucked in and then I take them down to bed.  Karen follows at her own pace and is usually able to sing a couple of songs to them while putting them to bed.  The kids have been great and adjust to the changes faster than I do.

Story time with mommy - Rebecca, Karen & James

We drove down to Huntsman Cancer Hospital today for the TIPS procedure.  As I type this Karen is having the procedure done.  Just after they took her in I asked the doctor about the ascites (fluid in the belly) and if it could be drained since Karen had wanted me to check on that for her.  He said they usually do that during these procedures.  We have been very fortunate in how many good people have attended to her needs.

On Tuesday Karen had a blood transfusion so she would be 'topped off' for the procedure.  While she was having that done she did a phone interview with a reporter from KSL.  Karen had been debating whether or not to do it at all and finally decided to go ahead.  Between when we left Logan this morning and arrived at the the hospital the story had been posted and more support had begun to flow in.  I hope those reading this realize how much good there is in the world, how decent and selfless so many people are and how caring they can be to those in need.

Braden

Christmas Eve

Karen and I met with the oncologist on Monday.  It had been 5 weeks since she her last chemo treatment and she was anxious to resume.  The doctor let us know quite a bit depends on how successful the TIPS procedure is.  If it works well she can stay on chemo but if not the doctor wants to stop treatment.

During the appointment we asked about other treatment options to which the doctor responded that the third and fourth line options are just not very effective.  She is on the second line option and may be able to go back to the first line treatment since the side effects have subsided.  Clinical trials are most likely not an option due to Karen's declining health unless it is a phase one trial.  When we asked the doctor why only phase one he said they may not be as concerned with patient health.  It has given us a lot to think about and process.

We asked the doctor directly for a timeline and he said with treatment she could have another year and without she could have six months.  It's not the best Christmas present we could have gotten but at least he gave the okay for her chemo treatment on Monday.  The dosage levels were adjusted to hopefully reduce the side effects.  We will see if that works since Karen is scheduled for chemo again on January 4th.  The doctor did warn that with chemo her health could decline rapidly if the toxicity goes up and causes more problems with her blood counts.  Her regular blood tests will let us monitor that.

After the appointment we went out to eat together since the kids were with Karen's parents.  It was nice to get out and just talk for a while.  After we got back to Logan, we met with a home healthcare and hospice provider to see what help they can provide for Karen.  One of the nice things they can do is home blood tests so she doesn't have to constantly go to the hospital lab.  She will probably begin home health early in January to make things a little easier on her.

For right now we are going to focus on having a great Christmas.

Merry Christmas!

Braden

December 19

Sorry for not posting sooner.  Lately it always seems to be some good news and bad news.  Good news is that the results of the PET scan showed some totally dead tumors in her liver with others that were about 10% alive.  The doctor feels the disease in the liver is under control and would not recommend any further treatments unless that changes.  He did say one factor in that is Karen's current health.  So the bad news is the PET scan showed several more tumors in each of her lungs than we had thought.  We will be talking more about the PET scan with her oncologist on Monday.

So the embolism procedure to cut off the blood flow to her hemorrhoids is not going to happen.  Instead she will have the TIPS procedure to, at least partially, bypass the portal vein in her liver.  That will slowly reduce the fluid buildup in her legs and reduce some of the other effects of her portal hypertension.  We had originally thought the TIPS procedure would not be a good idea but after talking to the doctor about the risks and options for adjusting or even reversing the bypass we felt it would be good to go ahead.  The doctor thinks the TIPS alone will help reduce the bleeding from the hemorrhoids.

The fluid that Karen has been retaining has gone down over the last two weeks.  We are keeping an eye on her blood tests to make sure she doesn't run into complications.  On Wednesday of this past week she needed another blood transfusion where she was given two units.  Still, some of her tests remain low.  There isn't much we can do about that so we try to make the best of it.

The meeting with the oncologist on Monday promises to be interesting.  One of the last times Karen spoke to him he did not want to do any more chemo until her blood counts improved.  Since she is not tolerating this regimen as well as we had hoped he is probably going to change things up or wait on the TIPS procedure. Karen is nervous about having an almost two month gap between chemo rounds. Hopefully the doctor will have an answer. Both of us are a little worried about the appointment but trust things will work out for the best.

James and Rebecca are doing well.  They both love to play and have fun.  The other day Karen and I were talking when things suddenly got a little too quiet.  I wandered into the next room to find James had opened three of Karen's gifts.  I hurried and blocked Karen's view and asked her to grab a bag so I could stuff everything in it.  Luckily Karen didn't see any of the gifts but it's a reminder of what kids do.  Leave it to the kids to lighten the mood and remind us of what it's all about.

Rebecca and James just before bed time.

Braden

October to November

As usual it has been a while since anything was posted.  We had a good Halloween though the kids refused to stay in their costumes for more than an hour.  Fast forward a month and we were able to have Thanksgiving with Karen's parents and siblings.  The next day Karen wasn't feeling well and recognized it as signs of dehydration setting in so we made a trip to the ER so she could get some I.V. fluids.  She left a few hours later feeling better.

Karen's blood counts have been lower than normal so her chemo treatments have been less than regular.  On Monday (11/30/2015) her oncologist let us know he wanted her to have a colonoscopy (her third this year) to see if a cause of the bleeding and low blood counts could be identified.  The first two weren't able to get very far due to bleeding and the tumor.  The third time was the charm and they were able to get all the way up since the tumor in her colon was removed over the summer.  Nothing significant was found.  That's the short version.  Here is the long version.

Monday she was admitted to the hospital and stayed until Thursday.  The doctors were concerned that doing the colonoscopy on an outpatient basis was too risky and they wanted her admitted in case any complications arose.  They gave her several units of blood and platelets to help with her blood counts.  So far the bleeding has lessened significantly but the underlying cause needs to be resolved before her oncologist believes they can safely resume her chemo treatments.

They believe the cause of the bleeding is hemorrhoids in conjunction with a condition known as portal hypertension.  There is a vein in the liver (the portal vein) that is being constricted.  Since there is another way back to the heart the blood takes the alternate route but in essence causes a traffic jam which increases the blood pressure in her abdomen.  When her hemorrhoids bleed they do so much more than normal due to the increased blood pressure and the reduced ability of her blood to clot.

The normal procedure for taking care of hemorrhoids like these is surgical banding.  However, since these other conditions exist there is good chance that she could bleed to death very quickly if that were attempted.  What they are going to try instead is internally cut off the blood flow to the hemorrhoids.  There is a good chance they can either reduce or eliminate the bleeding completely.  We are hoping to find out this week when or even if that can be tried.

The doctors did mention something called a TIPS procedure which allows the blood flow to bypass the portal vein in the liver.  Possible complications of that are a buildup of toxins in the body since the blood flow would partially bypass the liver and reduce its ability to remove toxins from her blood.  The buildup can cause mental confusion and dementia like symptoms.

As if Karen didn't have enough to deal with, another side effect of portal hypertension is fluid tends to collect up in the legs and abdomen.  She looks like she is pregnant and has even been asked twice when she is expecting.  We told the ER doctor that and he responded that she could have a lot of fun with those comments.

I think that catches you up on what has been happening lately.  This week was already going to be busy for us.  Karen has a PET scan at Huntsman scheduled Thursday and an appointment with the interventional radiologist to go over the results and see how well the Y90 treatments worked.  This is also the doctor that may be able to cut off the internal blood flow to her hemorrhoids.

Karen and I are very grateful that a few people that I work with volunteered to help us with Christmas shopping.  It's a good thing since Karen was not in any shape to be out and about on black Friday.  Some young women from the ward called while Karen was in the hospital to volunteer for a few hours of babysitting on Saturday.  When they called they didn't know Karen was in the hospital or the situation we were in.  With babysitters lined up we were able to go for a drive, just the two of us, and talk.  It was nice to have some free time with her.

Things happen for a reason, we just need to figure out what the reason is.  Sometimes it requires some patience to find the reason but it does come.

I will try to keep the blog updated with what we find this week.

Braden