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

Half way thru craziness

June 29th I went in for another blood transfusion. Two units this time. The July 1st was the mapping procedure to make sure the Y90 radiation will work like they want. (And so far so good.)  July 2nd was the bowel reconstruction surgery. I just got out of the hospital July 8. They were able to do a bowel resection, so no colostomy for me. :-)

While we were in the ER in June Braden was offered a job with IHC in Logan which he accepted. He starts July 20th so we are hurrying to pack and get the house listed for sale. Okay, I'm not doing any of the work, I just get to direct people which I am not good at. Usually I jump in and help even if I am out of energy. There are a lot of people coming to help so this should go fast. We have seen so much love and support where we are that it is hard to leave, but we feel good about the job and know that every thing will work out for the best.

Love you all. And thank you for your support, love and prayers. We truly feel blessed.

Karen

Off again on again...

Karen is out of the hospital and at home now.  The surgeon has her on his schedule for July 2nd.  There are three likely scenarios that could play out. They will look with a scope first to see if there are lots of little tumors that don't show up on a CT scan. If that is the case nothing will be done. If it looks like there is enough good tissue available they will attempt a resection. If their is too much damaged tissue they will perform a colostomy.  We are hoping for the resection scenario.

After the appointment with the surgeon we had thought the directed radiation treatment would be delayed but after a few phone calls and some questions it looks like it is still a go.  The oncologist and radiologist both say it shouldn't affect recovery from surgery too much with how it is currently scheduled.  The surgeon agrees but did say the bowel prep prior to surgery will be made more difficult and uncomfortable with a sore leg due to the incision and catheter insertion during the mapping procedure.  Karen has said she is willing so I'll do what I can to help.

My help usually involves cracking jokes and twiddling my thumbs while she does all the hard work.  Some day we'll know why she had to go through all this.  Until then we just keep plugging along, hoping for the best and raising our little miracles as well as we can.

Braden

Y90

So the insurance has approved the Y90 procedure. The one where they use an artery in my leg to insert radioactive pellets to my liver.

It takes three appointments to do the procedure. The first is to map the blood vessels that go to my liver to make sure that the pellets will go to the cancerous areas without affecting too much healthy tissue. They use die covered pellets for this and then do a CT scan a few hours later to see where the pellets ended up. It is an all day thing, but if it doesn't show the doctors what they want to see then we don't move onto steps 2 and 3. This will happen just before the 4th of July.

If all goes well then mid July we have our second appointment where they go in and inject radioactive pellets into one half of my liver. Two weeks later they will go in and do the other half.

On the off weeks from radiation I will still be receiving my chemo treatments. We also have two family reunions in July. It is going to be one crazy month, but the timing seems to be working wonderfully. There was only one day where it looked like I needed to find help and then my sister tells me that my niece can come help.

I love my family and the way we come to each others aid. We are a crazy lot and don't always agree with one another, but when someone needs help there is usually someone who can come.

This post was originally created prior to Karen's latest hospital stay.

May/June Update (Just roll with it)

It has been a long time since my last post.  In that time a lot has happened.  Karen's treatment has been changed up and will be changing even more in the coming weeks.

She has been reduced to a single drug (5FU) in preparation for some directed radiation treatments.  Her oncologist referred her to a radiologist at the Huntsman Center in Salt Lake.  The appointment was the Friday before Memorial Day and went well.  He gave us a rundown on the treatment and a generic plan and then left it for us to decide.  We talked it over and think it's the best option at this point.

One of the nice things about this type of treatment is that the side effects are not as severe as with traditional radiation.  A line is inserted via an artery in her leg.  It is then run to her liver where radioactive beads are released.  Because of how the blood flow works to the tumors the diseased portion of her liver will get a significantly larger dose.  It's not perfect and they will have to do a premliminary mapping session to see how the blood flows but we are confident.

Unfortunately the liver is more easily damaged by radiation treatments so repeat sessions are limited.  They do have other directed options that have the same delivery method but use chemo medications instead.  Using the chemo medications it is possible to repeat the treatment.

Our holiday went well after Karen's appointment.  We were able to visit family and visit graves.  We weren't able to make the trip last year since Becca was still on oxygen at the time and Karen was still recovering from her own hospital stay as well as adjusting to the chemo regimen.  We are blessed to have kids that travel so well.  We are usually able to drive for 2-3 hours at a time before they need breaks.  It was nice to be around lots of family and catch up with them.  We don't get to see many of them nearly as often as we would like.

The above portion of this post was written prior to June 22nd.  When I originally said her treatment would be changing up, I had no idea how much...

June 22nd

Today Karen was admitted to the hospital.  Her hematocrit level tested at 18 this morning where 40 is normal.  Her oncologist called before I had left for work to give us the results.  He has never called that early so we knew it probably wasn't good news.  It wasn't much of a surprise to have him advise her strongly that she needed to head into the ER.

Karen and I talked it over and decided against a repeat of going to the local ER and then having her go via ambulance to another hospital.  Instead we packed up the car and headed to another hospital where she was taken into the ER and then admitted.  Her hematocrit was tested again and came back at 16.6.  Lower but within the margin or error between labs.

After Karen was in the ER I took the kids to stay with Karen's sister a few minutes away.  Once they were settled I headed back over and stayed with her for the rest of the day.  When I left they expected to test her levels again around 2AM and reevaluate.

Karen's oncologist raised the possibility of surgery to stop what they believe is bleeding from the tumor in the colon.  She has an appointment with a general surgeon on Wednesday if she isn't still in the hospital.  The current thinking is they will raise her blood levels and stabilize her in preparation for surgery as early as the end of this week.

That means the original schedule for the directed radiation therapy has been thrown out the window.  Something we have learned living in a rural area over the last few years is that when something unexpected happens that you just roll with it.  A few years ago I can't imagine being this calm with so many changes and challenges being thrown at us.  I feel the Lord is and has been supporting us all along in this trial directly and through friends, family and even total strangers.

Braden

April 24 (CT Scan #7)

I have procrastinated writing this post because we got mixed news.

Good news first, the original spots in my lung and liver are stable. That means no major change. Stable is good. The bad news is that they saw several new small spots in my liver. My oncologist wants me to go to a radiologist and see if they think that I am a candidate for a directed or targeted radiaton to go along with chemo treatments. It is a fairly new form of treatment, but they have been seeing good results with colon cancer. They go in thru a vein and deposit a small amount of radioactive material into my liver and do a very localized radiaton treatment. Hopefully that means no burnt skin and less symptoms. I've been told that radiation in general doesn't have as nasty of side effects as chemo. *fingers crossed* We will know more when I meet with the radiologist at the Huntsman Center in SLC just before Memorial day.

God has a hand in all things. I have been told to trust my doctors, that they will be guided to the best option for me. Radiaton kind of scares me, but with God all things are possible. So I will trust in him and try not to take council of my fears.

Each new day is a blessing. And I plan on having many more. For I have plans for tomorrow.

Good night and God bless you all for your prayers, support and encouragement. Thank you.

Karen

I am what I am!

Hey, it's me again.

I've been thinking about body image lately. With having two kids in two years and then starting chemo immediately afterwards I have changed a lot. I used to have hair that was thick and easy to do, no longer. I could fit into jeans comfortably, now I can't. My shirts pull in weird places. I will never have flat abs again from the bloating that comes with colon cancer. I don't want to wear nice clothes during chemo weeks for fear of ruining them. I look in the mirror and see me but yet it's not the me I'm accustomed to.

I never imagined this would be one of the things I would have to deal with when I started chemo. However I came across a blog that was talking about self image. https://cannebodyhearme.wordpress.com/2015/04/13/the-after-myth/
And it reminded me of a Dr Seuss poem:
“Today you are You, that is truer than true.
There is no one alive who is Youer than You.
Shout loud, ‘I am lucky to be what I am!
Thank goodness I’m not just a clam or a ham
Or a dusty old jar of sour gooseberry jam!
I am what I am! That’s a great thing to be!
If I say so myself,
HAPPY BIRTHDAY TO ME!’
—Dr. Seuss, from “Happy Birthday to You!”

Once upon a time I had this poem memorized. I guess I need to do it again.

Kid Update

Just an update on what the kids have been up to the last two months.

James is talking. Every day he adds to his vocabulary. He doesn't have all the sounds down yet so some of his words sound the same, but he is sure to correct me if I guess wrong.

Becca is crawling. Hands and knees crawling. She also can go up and down stairs. She is still working on turning around a the top.

Life goes by so fast. We are trying to enjoy each moment. Hopefully I get many more years to watch these small precious moments.

Mask Overload

So I haven't kept up with my goal very well the last two months. So it's time to get you caught up on all the masks. Enjoy.

1 Year Comparison

Since it is almost James's birthday, I decided it was time to post Becca's one year comparison picture.

Here she is at 1 month, 1 year and 6 months.

 

1 month

6 months

1 year

Karen

Valentine's Day

We got to spend another Valentine's Day in the hospital. With the colonoscopy and chemo several days afterward I got severely dehydrated and ended up going to the ER early Thursday morning. The nurses there didn't feel that they could provide the care I needed and sent me to Mountain View later that day. It was my first ever ambulance ride. I slept most of the way so I can't tell you much besides it was bumpy.

I was checked into the ICU but at a slightly less critical level. They ran a bunch of tests because I had a fever, but could find no infections. A very good thing. The next day I was moved to a regular room where I was on reverse isolation which meant that every one who came into my room had to wear a mask, but I could go mask free. The doctor was afraid I had sepsis and had me on a heavy duty antibiotic. After a myriad of tests they couldn't find any infection and stopped the antibiotics.

On Valentine's Day the doctor almost let me go home, but decided that I would do better with a transfusion. So I got to play vampire and received two units of blood. The transfusions stopped just in time for Braden, my sister, and brother in law to arrive with dinner. Take out from a local Indian restaurant. Delicious. We also got to watch Maleficent and it turned out to be a better movie than I thought it would be.

My mother in law said that we had a nice weekend get away. No kids, all of my meals catered, free movies... If so, it is one I don't want to repeat often. I really hope hospital stays don't become the new Valentine's day tradition.

One Year

I had been putting off a post about one year since Karen was diagnosed with cancer.  Originally I was going to post about how much things had changed for us in the last year.  Experiences over the last two days have made me reevaluate that approach.

One year ago on February 10th 2014 I drove Karen to what wr thought was going to be a relatively short visit.  An hour drive up, an hour or so with the doctor and an hour drive home.  That three hours turned into a three week hospital stay for Karen.  Becca was born a short time later and ended up in the hospital a bit longer than Karen.  We made it through that and I sure Karen will make it through the latesy problem.

Wednesday night Karen was not holding anything down.  After a while dry heaving was bringing up blood.  A quick call to the doctor's office at 3AM and we were in our way to the ER.  Gratefully, Karen's parents were staying with us after Karen's last chemo treatment on Tuesday.  They were able to stay with the kids while I drove Karen.

After a few tests the staff in the ER decided there was some real cause for concern about a possible sepsis infection.  Wanting to make sure she was near the best available care Karen was transferred to a hospital with an ICU.  Karen is doing well and we are waiting on the results of her continurd blood tests to know how to proceed.  Sepsis hasn't been entirely ruled out but they are leaning more towards severe dehydration.  At this point we will just wait and see, then do our best to deal with anything that comes our way.

Karen is sleeping now and in my opinion has improved significantly over the last 36 hours.  She is pushing a little for more food.  I think she is a little worried about the variety and is having flashbacks to the puréed and liquid diets she was put on last year.

Still keeping it positive.

Braden

Masks #2

My masks for he last two weeks:

Blood draw, 2 February

Grocery Shopping, 4 February

Coloscopy, 5 February

Blood draw, 9 February

I did not grab a mask for Chemo on 10 February so I grabbed a plain one out of the car. I have been told that I need to keep a stash of decorated masks in my car for such occasions. I think that is a excellent idea and need to implement it asap.

Otter pops for Breakfast

I woke up early this morning with a mouthful of blood. It is a result of chemo and low platelet counts. It also causes nose bleeds.

The good news is that I get to eat otter pops for breakfast. The cold slows the blood flow and gives my body a chance to catch up. I guess ice cream would have a similar effect. Um, ice cream for breakfast.

Now you've made me hungry, got to go.

February 5 (Colonoscopy #2)

Me, getting ready to head out for my first colonoscopy I will be fully aware of. The first one was when I was in the hospital and not fully coherent. You can ask my neighbors. They had stopped by right as I was being wheeled down for the tests. (A colonoscopy to do a biopsy to check for cancer and an endoscopy to check my celiac disease.)

I decided to go as comfortable as possible. Including one of my new masks. I got compliments from the nurses, by the way.

After the exam the surgeon came and talked to us about what he saw. He said that he could not see any sign of the tumor besides a red spot where it might have been. That if he did not know my history he would not have even suspected that I had colon cancer. He said that at 40 cm he got to a bend that when he tried to get around it my bowel started to bleed so he stopped. Well, he made it 10 cm farther than a year ago.

I think I'm still in shock because the news doesn't seem real yet. Maybe I'm waiting to hear it from my oncologist for it to be offical.

I want to thank you all for being here with me through this incredible journey. We've had a lot of ups and downs but even in the downs we have been comforted. By your prayers, support, and service. We still have a long road a head of us, but knowing you are there helps make the journey bearable.

So, thank you again and God be with you.

January 26 (CT Scan #6)

I had my 6th CT Scan today. I am getting pretty good at it. I wore clothing with no metal so I didn't have to change into a gown. We did only I.V. contrast so there was no yucky drink and no fasting before hand. Sounds ideal right? Wrong.

The nurse and I were talking about how painful the port needle is going in and he tried to make it hurt as little as possible. The problem came when they tried to draw blood for the usual tests I get before chemo. There was no blood flow. Second try: a little more blood came, but not enough and there was a weird dark portion. Third try: He called the floor nurse and had her try Yep, that one hurt, but we got good blood flow and could do the scan. Afterwards the nurse forgot to flush the port before removing the needle and had to stick me again.

I always wondered what would happen if they didn't flush the port before removing the needle. Now I know and it was sort of anticlimactic. There was no squirting blood (my worst fear) only a little drop of blood at the site. No more than you would get having your blood drawn intravenously. So besides getting poked four times it was an educational experience.


January 27

Got the CT scan results today. The liver spots shrank by .5 cm, no change in the spot in my lung and no new spots. Yeah, still headed in the right direction.

Colonoscopy in February. Not sure if I'm looking forward to the experience, but I am looking forward to the results.

Almost Crawling

Becca is all most crawling. She gets up on her hands and knees and rocks back and forth as well as planking. She rolls most places, but if she really wants something right in front of her she slithers. I don't know how else to describe it. She doesn't spider crawl or crawl with her tummy on the floor, but somehow she moves her whole body and moves forward.

She amazes me all the time with how big she is getting When she was first born it seemed like it would take forever for her to look and be normal, but she has quickly surmounted those obstacles. She loves real food and lets you know if she is hungry or if she wants more. She squawks like a baby bird waiting to be fed and opens her mouth wide. She seems to be weaning herself off formula. She would rather have the real stuff.

Becca found the toy box on Sunday and decided to unload it.

Fault in Our Stars

I just finished reading Fault in Our Stars by John Green. While he did a great job of catching the humor of having cancer and some of the heart ache that goes with it. There was one thing that bugged me and that was the picc line.

He spent so much time talking about the oxygen tank and having to hook up to the condenser, which he named Phillip, that you get the impression that it is a real pain to deal with. I will give him that, having dealt with one for Becca. However, on the pain-in-the-neck scale I would rate the picc line higher.

Here is why; picc lines, as my doctors and nurses told me, are meant to be temporary so they are not as self contained as say a port a cath. You have to keep the site dry and sterile that means you shouldn't get it wet. Ever tried taking a shower or bath without getting your arm wet. Or used duct tape to seal a bag over a large portion of your arm. Yeah, it's no fun. Then you get to use one of those hospital bath sponges to clean what you could not get in the bath. They are just not the same as a good cleaning with soap and water. My arm never really felt clean until after the picc was removed and I could have a real live bath. It was heavenly.

Picc lines also have to be flushed with saline and heparin every night to keep them working right and to fight any infection. Braden hated that part. Fortunately it only lasted a couple weeks until they put my port in. (I am glossing over this part, if you really want to know what is involved in flushing a picc line, let me know and I can give you more details.)

I went through the older posts looking for a picture that showed the gauze-like sleeve that I wore to keep the picc lines from getting tangled or moving around too much, but I couldn't find one. But, if you look at the pictures I am always holding Becca with my left arm. That's because the picc was in my right arm. The lines, I had two of them, hung down to my elbow and it was uncomfortable to have them tugged on.

So, Mr Green if you wanted to show how awkward living with cancer can be, you choose one of the more mundane things to do it with. You had all the pieces in place for a more annoying one.

Ok, I am done now. Read the book, form your own opinion. This is just mine.

Mask-erade

So Saturday's  Mask-erade party was a lot of fun. A big thank you to those who were able to come. And a no worries to those who ended up having other things to do.

Sunday was my first time I could have worn one of my awesome new masks, but life got crazy trying to get two little kids ready for church after their naps. (We have afternoon church.) And I forgot to grab a mask on the way out the door. After getting the kids settled I had to grab a blank one out to the car. I hurried and drew a dunce cap on it because I felt like one. People were so kind to help me have cool masks to wear and I come to Church the next day with a blank one. I would post a picture but I did it in pen, since that was all I had, and it doesn'the show up very well.

Tuesday was chemo. This is me styling one of my new masks.

Today, this is the mask I wore to get my chemo pump disconnected.

It's so nice to have a variety of awesome looking masks to wear. Thank you all.

Catching up!

It has been quite a while since I have posted anything here.  For Christmas we made a trip to Logan and spent a week at Karen's parents house.

On Christmas Eve I took James over to the hotel where two of Karen's sisters were staying and we went swimming with the cousins.  James didn't really swim he just floated for a bit and got really quiet.  After he had enough, we went back to the house and enjoyed the family dinner with a little over 30 people.

James at the hotel getting ready to go swimming

Christmas was good with Karen and I both enjoying the kids opening their presents.  At least James has figured out how to rip the wrapping paper off.  Rebecca is still working on it out but James is more than willing to help out.

On Christmas we spent the morning with Karen's family and then went over to visit my family.  The few days afterwards were spent catching up with family and enjoying some time off and not having to think about Karen's next chemo treatment.  James was also able to play in the snow which hadn't really materialized before Christmas.

James trying to get out of the snow!

(Wearing his new hat and gloves, thanks mommy.)

Gratefully Karen's treatment schedule meant that the week of Christmas was an off week.  That also meant the week of New Years was a chemo week.  Karen's parents came down on New Years Eve and helped put together a small meal after which we watched movies.  To ring in the new year I took Karen to the hospital to have her chemo pump removed after her latest chemo round.

New Years Eve dinner.

Becca ready for bed on January 1st.

Since the Holidays we have been able to settle into a bit of a routine.  We did make another trip to Karen's parents over Martin Luther King Jr. day.  This week Karen had a CT scan that showed some more reduction in several of the tumors in her liver.  No change for the one on the lung but since she has been taken off of one of the drugs due to side effects that is great news.

Tuesday Karen headed in for her latest round of chemo and had her chemo pump off today.  The drug that she is no longer on causes problems with white blood cell count.  To counteract the effects she had been getting what they call a growth factor shot when her pump was removed.  I'm glad she doesn't really need it since one of its side effects is bone pain.  One less thing for her to go through.

Next month Karen is going in for a colonoscopy.  Originally we had thought we would have to go up north but it looks like we can have it done locally.  It makes it easier on her and the kids when we don't have to drive an hour each way.

James and Rebecca are doing great, especially considering everything that is going on around them.  James is running around everywhere and even likes to sweep and vacuum (when we let him) while Rebecca is 'motating'.  Not quite crawling but doing more than just rolling around on the floor.  A few more weeks and she will be crawling which means a gate at the top of the stairs again.

Becca with her cousin that is just a few weeks older.

James playing with mom's glasses.

Braden

Saturdays

Saturdays have become one of my favorite days. Especially the Saturday after chemo. I get to change the sheets on my bed, wash all the clothes I wore during those 5 days (twice in hot water), take a shower and wipe down the toilet with disinfectant one last time. Then I get to act like a normal person for a week.

Saturday is a special day.
It's the day we get rid of chemo.
We wash the sheets and show'r somemore.
So we don't have to worry until chemo.
(As you can tell rhymes are not my forte, neither are song parodies. If you think you can do better, I would love to hear them.)

During chemo and the two days afterwards (while my body is getting rid of the chemo) I use one specific bathroom which I wipe down with disinfectant every time I use it so if someone else needs it they won't come in contact with chemo residue. ... And try very hard to keep James out of that bathroom. For some reason he really likes to play there.

This Saturday is another day I am looking forward to. To try and reduce how many colds I catch this winter I have decided I really need to start wearing surgical masks more often. Recently I bought over 150 of them and they are boring. So I am holding a Mask-erade party to decorate them. I will have to post pictures of the decorated masks.

Saturday is a special day. It's the day we get ready for ... a party.

New Goal for 2015

I have decided that one of my goals for the new year should be to post on here at least once a week. Wish me luck.