Official Results

On Friday we got the official results from the CT scan.  I was very excited to read every little detail.  I was hopeful about what I would read, especially after seeing the scan on Wednesday.  I keep going over and over the picture of the tumor with a big black hole in my mind.  I am thinking of having it framed. ;)

Anyway, the report said that the two nodules that we saw on the last scan were unchanged as were the slightly enlarged lymph nodes.  The lymph nodes do not look diseased so that is good.  The big tumor now measures 8.7 X 8.5 cm, down from 12.8 X 8.6 cm in January.  There is still a slight plueral effusion on the left lung but the right lung is completely clear.  They also noted a slight pericardial effusion.  All of the surrounding organs, including the heart, look normal.  I am not sure about the tumor that was seen in the pericardium in Boston.  They did not find the tumor on the scan, only during surgery.  So, I am not sure if there has been a change in that tumor, I can only hope/assume that there has been. 

So far Trent has done pretty well with Round 23.  He is experiencing the normal fatigue and a bit of pain from the Neupogen shot.  We are trying to make sure he gets pain medicine about an hour before the shot and then head to bed shortly after the shot so he can sleep most of it off.  He has been out of bed and functioning pretty well for the entire afternoon and evening.  Hopefully that is a good sign for what the rest of the round holds for him.

Last week I was visiting a friend who also has cancer and her father told me about a book that he had read about a cancer survivor.  The survivor had interviewed several other Stage IV cancer survivors and found that they all had done similar things.  That prompted him to make a wagon wheel type chart to monitor his wellness in each of eight areas.   I loved the idea of having a visual for us to use to mark Trent's progress and areas that need a little work.  I made our own chart using the following areas: Chemo, Nutrition/Supplements, Sleep, Exercise, Mental/Spiritual, Social, Family (Relationships), and Activities/Hobbies.  Each day we can take a minute to assess each area and give Trent a score between 1-10.  This way he can see for himself what he needs to improve instead of me telling him he has to do something, like exercise.  The goal is to achieve 10's in all areas for balanced wellness.  We'll see how this goes...  

Do You Believe in Miracles?

The last few days have been interesting.  I have imagined every possible scenario and what my reaction would be to the results of the scans.  Funny thing, I never could have predicted what happened today.  

On our way down to SLC I was calm, cool and collected.  Trent was a ball of nerves.  I kept telling him we were going to be fine, hoping that my calmness would rub off on him.  As usual the scan took about one minute and then the waiting began.  We only had to wait two hours today which was really nice.  When Dr. Gouw came in he did not even greet us.  He walked right by us to the computer and said, "You gotta see this!"  I knew right off it was good.  He pulled up the scan and lined it up with last month's scan so we could compare the two. Then he scrolled down through the lungs.  As I watched the scan progress I kept biting my lip trying not to cry out loud.  I was completely entranced by what I saw.  What a difference!  Last month the left lung was almost completely white, indicating lots of pneumonia, a partially collapsed lung, and a whole lot of tumor.  This time the blackness was beautiful!  It looked like a perfectly healthy lung clear up until the tumor.  Pooh, the tumor is still there but it is shrinking!  There was a big black hole right in the middle of the tumor.  Necrosis!  Yay!  The tumor is dying!  At least half of the tumor was black in the middle and that is awesome!  There are two other nodules that we couldn't really see before because the tumor was so big.  However, each are on the perimeter of the lung and can easily be resected.  We don't know yet about the tumor in the pericardium but can only assume it is meeting its demise as well!  We will know more after we get the final report tomorrow.  

Dr.Gouw was completely shocked by the results.  He said he never could have guessed we would have such good results.  He gave all the credit to Dr. D'aDamo and the Spanish trial of these drugs.  We know better though. :)  He said that he never would have thought to use that combination for Trent especially since he had already tried both drugs.  He will also be using this combination on other patients now too!  Katie and Dr. Gouw were thrilled with how well Trent is doing on this chemo.  His labs were fabulous.  Katie jokingly said, "What are you doing, eating steak every day?"  YES!  He is!  He has a steak and some potatoes almost every afternoon for a snack.  Apparently that does his body good!  

The cancer sweats are almost completely gone after I upped the dose of his Lyrica to every day instead of every other day.  Thank goodness!  That was so difficult for Trent to deal with.  Now we just need to keep his innards regular and he will be one happy camper.  We are going to try milk sugar and hopefully that will do the trick.

Dr. Gouw was saying that when he looks at a patient's labs they are color coded for low levels or high levels.  He said Trent's last labs were a rainbow of colors because they were so messed up.  This time almost his entire reading was blue (normal range).  He said whatever we are doing needs to continue because whatever it is, it's working!  We are going for four more rounds of chemo and then a scan on May 1st. 

When we went to infusion for Round 23 we saw a volunteer, Mary Ann, that we had met once before.  She and Trent had talked a little about a month ago and she told him her husband was taking her to Walt Disney World.  She told Trent she would shout hello to him when she got there.  She did better than that!  She had Daisy Duck hold a sign that said, "We love you Trent" and took a picture.  She then made him the cutest scrapbook page with some of her pictures.  How sweet!  She told us that she had recently been visiting her son in Tobyhanna, Pennsylvania.  She went to a very poor church there that she says has a very passionate congregation.  She didn't know my name so she put "Trent and his princess" on the prayer book there.  Now every time that church holds Mass, their congregation prays for us.  Again, how sweet!  

Trent, Eric (Mary Ann's husband), and Mary Ann

Trent was feeling fabulous all through his infusion.  Our nurse was new and recently moved here from Hawaii.  How convenient!  We grilled her all day for details and advice about vacationing in Hawaii.  After infusion we stopped to do a little grocery shopping and he went right down the tubes.  That's when it hit me.  Even after all the great news today, our life still consists of chemo, chemo, and more chemo.  It kind of deflated my mood a bit as I watched Trent get more and more sick with each passing moment.  He hates the physical pain, fatigue, and sickness.  I hate the mental tricks chemo plays on him.  That is the hardest for me.   Thankfully that only lasts for about a week.  It seems like each round Trent has been given a few more good days than the round before.  I am so grateful for those tender mercies!

As we continue on this journey I have to wonder, what are we supposed to be learning?  What are we supposed to be doing?  Is Trent being spared and for what purpose?  I don't know the answers to all of these questions.  But there is one thing I do know.  Miracles happen.  Everyday.   I believe we have been granted one today.  I BELIEVE IN MIRACLES!!!

Yeah for Feeling Good!

Trent has done so well this weekend!  He has really enjoyed being up and feeling somewhat normal.  He even drove the car to go shopping with Zach and have a little "guy time".  I know, you are thinking, "What?! Guy time is shopping?"  I assure you, it was not my type of shopping.  They went in search of an ipod dock but ended up buying candy and going out to lunch.  So yeah, it was guy time.

My brother blessed his baby this weekend so we had almost the whole family here for the occasion.  Trent was with us every step of the way, hanging out, stuffing his face, and enjoying the family.

Yesterday after Mike (my brother who was blessing his baby) went to his in-laws' ward he stopped by, thinking he would go down and hang out with Trent while we were all at church.  Surprise!  Trent had already gotten himself to church.  I was planning on running home during the last of Sunday School to help get him ready so he could come for Sacrament meeting. I was shocked when I looked up to see Trent coming in at the beginning of the meeting.  He sat on a different row than me and just waved at me as my jaw hit the floor.  I motioned for him to come sit by me and he just gave me that silly little wave again.  What a goof!  I loved it though!  I went to sit by him and threw my arm around his back.  He looked great and was all smiles-for a few minutes.  He had only been there for about five minutes when he asked for pain medicine.  Of course I didn't have it with me because I was supposed to get it when I went home for him.  I ended up going for a little jog home to get his meds.  I am so glad we live close to the church! :)  He did fine after he had the medicine and everyone kept saying how good he looks.  It was lovely!

I know we are all getting very anxious and excited for the scans this week.  Trent wants to pack a bag and fly to Hawaii as soon as we hear the results, no matter what they are.  We'll see...I am not sure I am that spontaneous.

Haircut 2.5

I just finished cutting Trent's hair for the third time.  This time was only a half of a hair cut.  He absolutely does not want to be bald again until there is no way around it.  We were told he would lose his hair but it has taken so long to come out this time.  The other times his hair was coming out in clumps but this time it has been very gradual.  He is fighting hard to hang onto every hair that he can.  I was starting to see a return of the "phantom" look. (You know, in the "Phantom of the Opera, when they rip of his mask and his hair is all patchy and gross.)  I suggested a trim might help out a little.  We started out with a #6 and got down to a #4 before he said that was enough.  At least now it is all the same length and doesn't look as patchy.  He's no Rapunzel but he's still not Mr. Clean either!

Before

After

Happy Valentine's Day!

THANK YOU SECRET VALENTINE!!! We got a very fun surprise on our doorstep on Monday morning.  The doorbell rang and Jonathan ran to get it. He started screaming, "They brought us something! They brought us something!"  He ran to get me and kept saying he saw a guy.  I was on the phone at the time and by the time I got out there Jonny was lugging in a  big Valentines bag full of cookies and decorating supplies!  How did you know?! One of our traditions is to make and decorate cookies for all the holidays.  I have to admit that I have been pretty bad about that lately.  The holidays always sneak up on me and I find myself unprepared.  Not this time though!  It worked very nicely to have a Family Home Evening about Love and Valentines Day and then frost cookies with all the fun things we were given.  

"Happy Valentines Week! Because we HEART you so much, and think you're great, we wanted to help you make a Valentine's memory.  So slather on the FROSTING, SPRINKLE on the LOVE and enjoy some time together with your family."

The kids were so excited to see what was in the bag!

I ended up frosting most of them while the kids put the candy on.  I love the one at the top in the middle with the eyebrows...I think it is hilarious!  The one on the right side in the middle is supposed to be Jonathan.  :)

Jonathan had so much fun putting EVERYTHING on his cookie.  You can see his little hands at the top of the picture putting more sprinkles on his highly decorated cookie.

Happy Valentines Day!!!

Thank you, thank you, thank you.  You have no idea what great memories you have created for us.  We had a fun evening and laughed and giggled at everyone's creations.  This is one Valentines Day we will never forget!

Wondering...

So far round 22 has not been too bad.  Of course Trent has been in pain and tired, but nothing really besides that.  He is having cancer sweats again and that is aggravating.  When he doesn't sleep he is a little cranky and I can totally understand that.  Stinks though.  His hair is gradually falling out again but he won't let me touch it.  I tried to show him a picture of his hair right before he started chemo again, hoping he would see the difference between then and now.  It made no difference to him whatsoever.  He is insistent that the fact that he even still has some hair means he is proving everyone wrong.  I am not going to rain on that parade!  Funny thing though, his eyelashes and eyebrows are growing back quite nicely.  He is even getting new chest and facial hair.  It seems the only place his hair has fallen out is on his head.  So yeah, he is proving them wrong!  :)

He made it to church yesterday and was alright.  He was up most of the day with us and he seemed to be doing okay.  I was talking to my parents last night about how Trent was doing.  I still think he is improving.  He looks healthier even though he is tired.  My mom put it just right, she said there is more "life" in his face.  I haven't been able to describe the change very well but I think she did.  There is more "life" in him!  While he is still suffering from the effects of chemo and especially the Neupogen shot, he looks better overall.  His vital signs have all stayed normal and the coughing has stopped completely.  He hasn't coughed up blood for at least 2-3 weeks.  That is a big relief!

We are preparing for the scans on the 22nd and what the next step will be, whatever the results are.  I have been wondering about going back to Boston.  I am not sure anymore that Boston is the answer.  I was brushing my teeth last week and  out of nowhere the thought popped into my mind that maybe the reason we went to Boston was not to meet Dr. Sugarbaker, but to meet Dr. D'aDamo.   Is it a coincidence that we went twice hoping for surgery and both times came home without it?  We never would have come up with the current chemo regiment if we had not met Dr. D'aDamo.  We don't know if it is working yet but Trent has definitely improved since we started.  The whole thing just makes me wonder...

I am also leaning toward having Dr. Karwande do whatever surgery is necessary.  He is a cardio thoracic surgeon and given Trent's history, I definitely think a surgeon who knows his way around a heart is a good idea.  Plus, Dr. Karwande is amazing.  I can't say enough good about him!

So many questions.  That is all we have right now.  We are looking forward to a few more answers!  Ten more days...the countdown begins!

Round 22

The last few days have been pretty fabulous all things considered.  Trent has done pretty well with only minor disturbances.  We headed down to SLC yesterday for round 22.  All the way down Trent was joking and laughing and just being himself.  It was delicious. :)

Right before we checked in we saw Mark and LaDena.  Mark still has a full head of hair!  He says he has lost 60% of his hair but you could have fooled me!  Of course, his grandmother was a hair model for Clairol so he obviously has great genes.  We shared some peppermint with Mark hoping to help with his nausea.  It was so fun to see our friends.  That is always a "pick me up" for us!

When Trent weighed in he was up about six pounds from last time.  Yay!  All of his labs look really good.  He has remained stable or improved on most of them.  Another YAY!  All during infusion Trent was doing great.  I was watching closely to see when it started to hit him.  He surprised me though.  Even as we were leaving he was still laughing and joking.  That lasted for about 25 minutes.  Then he started quieting down and in another 15 minutes he was moaning.  Not fun.  By the time we got home we was ready for bed.  We all checked in early last night hoping to sleep it off.

I was thinking we had pretty much gotten a handle on the night sweats.  Last time we were down for Infusion we spoke to a nurse who told us that for breast cancer patients who have night sweats they sometimes prescribe Neurontin.  Katie reminded me that Neurontin is very similar to Lyrica, which Trent is already taking.  So I started giving him his prescribed dose of one per day.  We had been cutting back to one every other day because he takes it for nerve pain which has been under control for quite some time.  Upping the dose seemed to help a lot until last night.  He was up again to change his clothes because he was so sweaty, but I don't think it was nearly as bad as it used to be.

As of now, Trent is feeling yucky but doing okay.  I am sure that will change around six o'clock tonight when I have to give him the Neupogen shot.

Family Time

Thursday evening Trent's mom and sister flew in from AZ and CA respectively. Both of their birthdays were that weekend and it worked out great to have a combined birthday party.  Trent was pretty sick the first day they were here because of that darn Neupogen shot.  Friday he slept most of the day but pulled himself out of bed to have a movie night with the family.  We watched "Dolphin Tale" and the kids LOVED it!  Saturday all of Trent's family came down from Idaho to celebrate the birthdays.  They all stayed at a hotel so we took our kids over and let them swim for hours.  Trent was completely drained but determined not to miss the party.  At one point I was lifting his head off the table so he could eat.  He was so tired and unstable.  

The Birthday Girls---and Travis :)

Trevor, Tracy, Trent, Trisha, Travis, and Troy

 We left part way through the party to come home and have dinner with Elder Porter of the Seventy.  He and his wife were visiting for our Stake Conference.  They were so nice and offered to include us in their prayers.

We headed back to the party for some games and fun.  Trent and all the boys went to the movie.  He had a great time but I was worried he would pay for it the next day.

The next day at Stake Conference my mom was called on by Elder Porter to come share her testimony.  After her, Elder Porter asked that a member of the Stake Presidency do the same.  When he got up I knew I was next.  I just had that feeling.  Thankfully time was short so I didn't get called.  Elder Porter told my mom and dad both that he was going to call me next but in the interest of time, he didn't.  Whew!  Boy did I luck out!  I am sure it was a great meeting but I only caught bits and pieces of it.  Five kids in a two hour meeting is an event nigh unto a marathon sometimes.  The kids were not misbehaved but five kids moving and whispering and asking for treats or paper or pencils can be exhausting to oversee.

Trent finally got out of bed around 3:00 in the afternoon to join the Superbowl party that was going on with his whole family at our house.  He started eating then and didn't stop until he went to bed.  It was great!  His appetite was voracious!   I made him get on the scale expecting to see at least a couple of pounds of weight gain.  No such luck....but he hasn't lost any either, so that is a good thing.

By the end of the night he was looking pretty good.  He was having a good time and enjoyed the food and the game. Surprisingly he got out of bed at 10:00 this morning and was doing really well!  He was more like Trent than I have seen for a few weeks.  We even went for a short drive with him behind the wheel!  I sneaked in and got the hug I have been waiting for for a very long time.  So nice...

He ended the day with a little stomach pain but overall it was a really great day!  I am hoping for one more day like today before chemo on Wednesday.

Shall We Dance?

Trent is just over 1/2 way through Round 21.  It has not been as bad as 19 and 20, but still not fun.  The coughing up blood has pretty much stopped.  This round he didn't get the bumps on his arm either.  He was mostly tired and achy from the Neupogen shot.  I enjoy giving him the shots (weird, I know) but I hate what they do to him.  Usually he can feel the effects within 20 minutes.  We have done very well at getting him several small meals every day and I think he might even have gained a few pounds.  The nausea is pretty much a non-issue with a wave hitting him only occasionally.  This round we have fought the emotional battle.  Trent goes back and forth and up and down.  It is difficult to be the strong one all the time, to always have the positive outlook.  Sometimes it feels like there are just too many people I have to be strong for and I could really use a partner being equally as strong.  He has just suffered for so long and is so tired of being in pain. Sigh...I really miss my husband!

There is a quote hanging on my bedroom wall that says, "Life is not about waiting for the storm to pass, it's about learning to dance in the rain."  I have loved this quote since I first saw it several years ago.  At the time I thought my "storm" was getting Trent through school.  I have though a lot about this quote as of late and how it really applies to me.  For so long I have said, "When Trent gets better we can..."  I have to look at life differently now.  There is not time to put off things that could be done now.  I can't keep waiting to really "live life" until the circumstances are perfect and life is peachy.  I have to learn to have joy in the life that is now.  Even though life is far from peachy and the circumstances less than wonderful, I need to learn to love what it is. Some days that is easier than others.  There is something to be learned everyday and I have to be up for the education.  So, shall we dance?