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

18 Month Comparison

No, I did not forget. I just have not gotten it posted.

Here is Becca at 18 months.

She is walking and talking. It is still kind of gibberish, but she is learning new words everyday. Her first words were please and uh-oh. She loves to tease people. If you ask her to come here usually she will run in the other direction laughing. We love her very much.

Hair; To Be or Not To Be

Braden mentioned severe hair loss in the last post. Well this is what I did about it, after much convincing.

Before:

After:

Ah, much better.

Busy Month

Since the last post Karen and I found time for a day trip to City of Rock.  We had a lot of fun and Karen was able to actually walk a lot more than last year.  James couldn't get enough of trying to climb the rocks and started to cry when we had to leave.  The views weren't quite as good as last year due to all the smoke in the air from the fires.  In a way the smoke was a blessing since there weren't nearly as many people.

The first week in September was the closing on the sale of our home in Mount Pleasant.  It was sad to sell it.  It was the place where so many great and happy memories were made.  Where we were finally blessed with the children we had struggled to have for so long.  I hope the new buyers realize what a special place it was for us.

Karen has resumed chemo though had to skip her regularly scheduled chemo session after Labor Day due to some low blood counts.  It didn't affect the targeted chemo the next week.  She is actually recovering better after this last treatment and has more energy.  On the down side, the new chemo medications have some other side effects.  One of those is severe hair loss so Karen has less hair on her head than me now.  All just in time for some family portraits this weekend.  To help she bought some hats to keep her head warm and protected from the sun.

Braden

Fourteen years and still going strong!

Since Karen's last post a lot has happened.  On July 16th and 30th she went in for her directed therapies.  I was able to be with her for the treatment on the 16th though not the 30th.  The treatment on July 16th was actually a little harder on her than her normal chemo for the first day or two.  Karen really struggled to keep any food or much liquid down for a day.  On the second day she was able to eat a little but was really feeling run down due, I think, to the lack of nutrition.

Between the two treatments we moved closer to family and I started a new job.  We had lots of help from friends and family packing, hauling and 'unpacking'.  Unpacking was really just putting the vast majority of our belongings into storage.  Our house is currently under contract and we hope it goes through but know that there is still the possibility of a problem coming up.  While we wait for the sale we are also looking for a house.  Karen and I both feel it is best to wait until the sale goes through before we make a real offer on anything.  Trying to afford two house payments and medical bills would be just a tad difficult.

While waiting for Karen to come out of sedation on July 16th I received word that the daughter of a neighbor and friend had been diagnosed with Hodgkins Lymphoma.  Karen and I decided at the last minute to make a side trip to visit him and his wife during our move on July 18th.  I wish we could have spent more time with them but we still had almost 100 miles left to drive and a moving van, a trailer and two other vehicles to unpack at the end of it.

That experience was just one of many that made it so hard to pack up and leave behind all of the people we had come to know and love.  When we first moved to Sanpete county I didn't really imagine I would ever be homesick for it but I am.  It's funny how a place and the people that live in it can come to mean so much to you in such a short period of time.


Karen's second directed treatment on the 30th was actually more involved than we had thought.  As it turns out the directed chemo actually has more side effects than directed radiation.  I hope I am getting this right since I wasn't with Karen for the second treatment (no time off yet with the new job).  It turns out that Karen also has something called spastic veins (caused by one of the chemo medications) which can collapse and then open back up.  It made consistently delivering chemo inside the liver difficult and another session has been scheduled for September.

Today, August 9th, is our 14th wedding anniversary and Karen is in Salt Lake without me again.  She has recovered enough from her surgery in July to start her regular chemo regimen again.  Friday we went out to eat and then spent Saturday together looking at houses, driving around and relaxing with James and Rebecca.  Not your typical anniversary but it's one more we were able to have with each other so I'll take it.

Braden