Doing Pretty Well

Round 27 is now half way over and Trent is doing pretty well.  As always, the first few days are a real downer but by Sunday Trent was doing pretty well.  He opted out of most of the soccer games on Saturday but was feeling well enough to make us dinner on Sunday.  He lays around watching the Food Network all the time so when he feels well, we reap the benefits in the way of new, tasty food.  I think he has learned to pace himself so that he rests as much as he can while the kids are at school so he can be more involved when they are home.

Yesterday we headed over to our storage shed to get Trent's compound miter saw for the project he is working on.  He even lugged that thing out of the shed and into the car.  It is not too heavy, and the old Trent could have twirled it around like a baton.  But, it was especially impressive, all things considering, to see him lifting the saw around without too much trouble.  He is working on a frame for his relief carving.  He has had so much fun and spent many hours perfecting his first masterpiece.  I can't wait to see it complete.

Tonight we are off to more activities for the kids.  I love that Trent can come with me!  The surgery schedule has worked out so well for us.  By the time surgery is here the kids' spring activities will all be done and our schedule will slow down considerably.  It is just too dang bad that his whole summer is pretty much down the tubes.  We will just have to be creative with the activities we choose and get ready for a busy fall once the kids start school again.  Life is pretty darn good!

Round 27...and Counting

That's right, still counting.  Trent received round 27 yesterday and on Tuesday we learned that there will be one more round before surgery.  The surgery has been moved back to May 31 to allow time for all the paperwork to be done to get clearance for Dr. Friedberg to do surgery in Utah.  So, in the meantime, Trent will have one more round of chemo, then get about three weeks of rest before the big day.  This is going to be a very intense surgery.  When we spoke with Dr. Carr on the phone the other day he kept saying, "This is a massive surgery."  Yeah, yeah, we get it, this is HUGE!!!!

There are all sorts of risks that have been laid out for us and we are well aware.  At one point Dr. Carr said if there was even an iota of hesitation or doubt we should not be doing this surgery.  I teared up a bit and told him that I understood that there are no guarantees with this surgery but there is a guarantee if we don't do it and I am not interested in that kind of guarantee.  So, all systems are go for the biggest adventure, no...experience, no...LEAP OF FAITH of our lives.

The Prayers of Children

I know there are many, many children praying for Trent everyday.  It always makes me tear up a bit when I hear about it.  There is something about the simple faith of a child making a daily plea to Heavenly Father that makes my heart go mushy and my eyes leak!  Meet Zane...he is my youngest cousin out of 69.  Yes, I have 69 cousins on my mother's side.  I am number nine out of 70 grand-kids.  Zane has been praying for Trent three times a day and didn't even know who Trent was.  So, yesterday while we were at a family party, Zane finally got to meet Trent.  He was so cute!  He was kind of shy which made my heart melt even more.  It was like he was meeting a celebrity of sorts.  Trent told him how much it meant to him to have Zane pray for him.  And of course, I had to get a picture!  It was really sweet.  :)

Trent and Zane

Notice the shaved head?  Trent finally let me fix it up a bit.  I intended to just trim everything because Trent didn't want to be bald again.  I trimmed half of his head and Trent got frustrated and said to just shave it all.  I was kind of sad to do it but it was looking so scraggly!  

We should be hearing today about the MRI on his hip from last week.  We are just a bit nervous but we expect it will be fine.  Hopefully we will know a definite surgery date soon.  

Trent had a pretty good week with a few ups and downs.  We got to visit Mark, our fellow sarcoma warrior, and catch up with him.  Saturday Trent went to four soccer games for our kids and a movie with Megan. He was kind of pooped after that but was better by Sunday morning for the mission homecoming for my cousin.  We are using every moment we have and trying to experience as much as possible with our family before surgery.  It is nerve racking to think about what is still in front of us.  I am not sure we have gotten through the hardest part yet.  Because of that I am continually amazed and grateful for the feeling of peace that we have.  No matter what happens, we are at peace.  It must be all those prayers...thanks Zane!

Heart Skipped a Beat...or FIVE!!!

Thankfully, I am not referring to Trent's heart with the title of this post.  I am referring to mine, yesterday, when Dr. Carr called.  I am not sure how many doctors call just to chit chat so when he called my heart skipped about five beats.  To make matters worse, I didn't get the call...one of the kids did.  Dr. Carr couldn't get them to understand, (it was probably Jonathan who picked up the phone) so he hung up.  I called his assistant, Jan, and she said she would have him call me back.  She then told me that Trent had been discussed in the Sarcoma Tumor Conference that morning.  There is a little bit of increased metabolic activity on Trent' hip that showed up on the PET scan.  The doctors all agreed that it is probably nothing but to be 100% sure, Trent needs to get a pelvic MRI done.  That is going to happen Thursday morning.

I finally got to talk to Dr. Carr late yesterday afternoon.  He really was calling to chit chat...kind of.  He had been told by Jan that we had some questions, which we did, so he wanted to call to give us a chance to have those questions answered.  I spent about five minutes on the phone with him and he reassured me that he was not too worried about the hip thing, and that it was all precautionary.

We then talked about the pericardium.  I had read the report of the cardiac MRI just hours before and had some concerns.  He told me he did too and he had spoken to Dr. Friedberg about it as well.  Dr. Friedberg thinks there is pericardial  involvement but not myocardial involvement.  Translation: a tumor has butted up to and eroded a portion of the pericardium but has not reached the heart.  He still believes it is worth the operation and that it is likely that only a portion of the pericardium will be removed.  This will all be verified during surgery.

So, we are still hopeful that everything is a 'go' and things are moving in the right direction.  It is most likely that surgery will be moved back to April 30 due to Dr. Friedberg's schedule, and could be bumped back a few days beyond that.  We are going to go ahead with chemo next week as planned.

The talk with Dr. Carr did calm me down a bit but I am still not sure whether or not I like to have the doctor call me instead of the other way around.  It's not good for my heart!

We Are Not Finished Yet...

We have had a pretty eventful week.  I have held off blogging for a few days while I tried to wrap my brain around everything that we have been through and what we still have ahead of us.  

Tuesday we headed down to SLC for an early appointment for a Pulmonary Function Test.  Trent had to do all this breathing while they monitored and measured everything on a computer.  It looked awful.  I was trying to do some of the breathing requirements with him to see how hard it was.  It was dang hard and I have full lung capacity!  He was a  trooper though and while his breathing is decreased, it is what they expected to see.

We met with Dr. Carr to discuss our options.  He proposed an extra pleural pneuomonectomy.  It is the same surgery we were scheduled to have in Boston but without the interoperative chemotherapy.  They also do not think that photodynamic therapy (which is what we would have had in Philly) is the best option for Trent.  So, Dr. Friedberg from the U of Penn has agreed to fly to SLC to do the surgery with Dr. Carr.  They will remove the entire left lung, the pleural lining, possibly some of the pericardial sac, and possibly some of the diaphragm.   The plan is to follow up with a few more rounds of chemo and about six weeks of high dose radiation to the empty chest cavity.  During surgery Dr. Carr will go straight for the pericardium and if there is a tumor there, they will back out.  There will be nothing left to do for Trent if that is the case.  Yeah, that was a lot to swallow.

We talked about the test results of the previous days.  The CT scan showed the big tumor is still shrinking but only by about a centimeter each direction.  We did not see the scan but they said the tumor looks like a big doughnut, all dead in the middle.  Yay!  The PET scan was also good.  No cancer anywhere except the lung.  However, they can't see cancer in the heart with a PET scan because the heart is already lit up.  The last PET showed Trent's activity number to be 31.  Normal is 2.  The places that read activity are your brain, heart, and kidneys.  Anything else is likely cancer.  This time his number was 6!  Can I get a 'Hallelujah'?!  That was great to hear.  That most likely means that the majority of his tumor is dead, or at least has very decreased reproduction.  The tests on his heart all came back normal, but we still haven't heard the results of the Cardiac MRI.

Dr. Carr told Trent that he would likely been on oxygen the rest of his life.  Any time anyone is sick, Trent would need to wear a mask and really protect his other lung.  Mentally it will take a little bit to get to the point of acceptance of being on oxygen forever.  I really don't think Trent will have to be on oxygen.  Dr. Carr pointed out that we don't really know what Trent will do...he has already blasted through every odd that was put before him.  So, it would surprise no one if he came out of this better off than he is now.  While Dr. Carr was talking I was scribbling notes and trying to stay calm.  Eventually I had the calmest feeling come over me.  At that moment Trent was saying to Dr. Carr that while this was a ton of information, and obviously a risky surgery, he was calm and felt like we should do it.

Dr. Carr said that for the longest time we have been seeing the light at the end of tunnel but were not really sure if that light was a train.  He has hope and believes there is a possibility that it is not.  So do we!  Dr. Carr admitted that he was nervous and  a little scared about this surgery.  I actually think that might be a good thing.  He is going to be meticulous!  He already is...with all the tests he has requested it is clear that he is crossing every 't' and dotting every 'i' before opening Trent's chest.

We left Dr. Carr's office and went back to the 'U' for a meeting with a cardiologist.  We had a newbie who had to be about 25 come talk to us first.  When I told him the procedure Trent would be having he had to break the words apart to figure out what it was.  Several medical professionals have had to do the same thing.  Finally the cardiologist came in.  He looked 14 but said he was older than Trent.  He said Trent is a 'low risk on an intermediately risky surgery' as far as his heart is concerned.  He did note that Trent's heart rate was about 118 and suggested that he begin taking a medicine to slow his heart rate, Metoprolol. I am not sure that he really needs it, I think he was just a little anxious because of everything he had just learned from Dr. Carr.  Dr. Mitchell, the cardiologist recommended having a stress test done the following morning.

Then we went back to the Hunstman to have a pre-op meeting with the anesthesiologist.  I am not sure why since surgery is not scheduled until April 23.  Anyway, while we were there Trent's heart rate was still a little high at 118 but the blood pressure cuff was not working so the nurse went to go get another machine.  While she was gone I asked Trent to humor me and sniff the peppermint for a bit.  In the two minutes it took the nurse to get the machine Trent's heart rate dropped to 103 by smelling the peppermint.  Hmmmm....I sure do like that stuff!

By the time we got home that night we were both exhausted.  Neither one of us made it past the living room.  Trent crashed on the couch on I slept on the recliner.  Unfortunately we were up even earlier the next day for more testing and chemo.

Wednesday Trent had to do a stress test, chemically, not on the treadmill.  We decided that with his leg issue it would be too hard for him to walk quickly on an incline so they gave him Dobutamine to speed up his heart so they could take pictures of it under stress.  They told him that in men it often makes them feel as though they have to use the bathroom but they really don't and the feeling passes after a while.  Sometimes men even beg for a urinal.  A few minutes into it Trent loudly announced, "I just urinated!"  That about sent everyone into a panic until he admitted he was kidding.  Sheesh!  As the medicine continued to raise his heart rate it got worse and worse.  It was awful to watch.  He was shaking and breathing really shallow, he was anxious and really wanted to get up.  All during this his blood pressure was dropping like a rock.  Then he got nauseous.  I ended up massaging his head while holding the peppermint under his nose.  They gave him some fluids and Metoprolol to bring his heart rate back down and raise his blood pressure.  By the time he was finished he looked pretty beat up.  Not the most fun morning...and he still had chemo to look forward to!

Trent-Stress Test

By the time we got to the Huntsman Trent was feeling horrible.  When I checked us in I requested a bed for him.  He was really feeling sick so they gave him an Ativan which he promptly threw up, along with the small bit of juice and water he had just had.  The nurse started his pre-meds and we monitored his low blood pressure for a bit while we were waiting for his labs to begin chemo.  Within about two hours he was feeling much better and was able to get up to the bathroom and have a little lunch.  He looked much better and his vitals were fine.  Too bad the poison being pumped into his veins would change all of that just a few short hours later.  Poor guy!  He really took a beating that day!

We are now in the grips of Round 26.  We had a rough morning and I will blame the Neupogen shot for that.  I hate this day in chemo.  It is "crazy day".  Trent usually gets really emotional and is sure he is taking his last breaths.  He says things like, "Make sure the kids know that I love them," and wants to make sure his funeral plans are in order.  Then it is my job to talk him down from all of that and reassure him he is not going anywhere yet.  Man, I hate this day.

Luckily, there is a new day waiting for us.  We feel very blessed that Trent has this chance for surgery and that the doctors are willing to do it for him.  We are anxious.  We are scared.  Yet we are at peace.  I know that the feeling we both felt while visiting with Dr. Carr is a confirmation that this is the right decision.  When we are scared or nervous we can remember that feeling and remind ourselves that it was reassurance from the Lord.  Whatever the outcome is, it was what the Lord wanted for us at this time.  That brings great peace to my trembling heart.

Surprise!

This week was full of surprises!  Let's look back on the GOOD one first...It was Conference weekend so we headed up to Rexburg to watch General Conference with Trent's family.  He had no idea I had been planning a surprise birthday party for him.  It wasn't a huge deal, just an ice cream party for anybody in his family that could come.  So as soon as all the men age 12 and up left for the Priesthood session, we got right to work.  The girls decorated Trevor and Heidy's house while Mallory and I ran to Broulims to get all the ice cream and toppings.

After the meeting Trent kept trying to get all the guys to go for a movie.  We gave the kids "silent noise makers" so they wouldn't give him a heart attack when he walked through the door.

I think we surprised him well enough!  He had a great time taking pictures and visiting with everyone.

The Birthday Boy!

Megan

Trent and Mallory

Jarom and Trent

Ben and Trent

Alex and Trent

Travis and Trent

Troy and Trent

All the "Conspirators"

Me and my hubby!

Jake and Trent

Kim and Jodi (all smiles!)

Jared and his baby

Susan and Heather

Trevor, Emmalyn, and Heidy

Patty and Susan (ahh...sisterly love)

Jaden

Joe (isn't he handsome) and Tracy

Annette and Lyle

Troy and Kristi

"Scary Eyes" Clynt

Jill

Trent and Zach

We had a great weekend and LOVED visiting with everyone. Thanks for the help in making a fun memory for our family!

Now onto the THRILLING surprise!!!!!  Last Wednesday I got a call from Katie, the nurse at the Huntsman.  She said that the tumor board at the U of Penn had just discussed Trent's case and their opinion is that the window of opportunity is open to do surgery for Trent.  Katie was giddy and I was shocked.  As we spoke my pulse was racing and I was trying to soak up every bit of information I could.  After the last scan was viewed by Dr. Carr, his response was, "Holy Crap!"  He then sent the scans to Dr. Friedberg in Philly to be reviewed by the U of Penn board of surgeons.  They all see a possibility for Trent and are willing to go for it.  Dr. Carr wanted to get started on a whole bunch of testing to determine if everything was ideal for surgery.  Those tests would be scheduled for Thursday, Friday, Monday (today), Tuesday, and followed up with chemo on Wednesday.

I ran downstairs to tell Trent.  I was doing my best not to jump up and down, although I did a little bit.  Weird thing, Trent was not nearly as excited as I was.  His initial reaction was a great big smile and a little excitement, quickly followed by a much smaller smile and a bit of fear.  He remembers just how bad the last lung surgery was and is a bit fearful of repeating that.  I totally understand that.  We have to keep reminding ourselves that we can do hard things.  I don't know how many times I have said that in the last four days.  We can do hard things.  We have done hard things and we can do them again!  

Let the testing begin!  Thursday we went to McKay Dee for a Cardiac MRI, a Quantitative VQ scan, Chest X-Ray, and a CT scan.  Friday we were back at McKay Dee for an Echo cardiogram.  Today was the PET scan and tomorrow is the Pulmonary Function test, a meeting with Dr. Carr, pre-op with Anesthesiology, and then a meeting with a Cardiologist.  Whew!  We are very anxious to hear the results of all this testing tomorrow.  We are fully aware that getting a positive (which really means bad) result on any one of these tests could be a major game changer.  We are preparing ourselves for whatever it is that we will hear while fully EXPECTING to hear great news!  

Just hanging out in the Quantitative VQ Scanner

Look what a happy patient he is! Awww....

This is the face of a SURVIVOR!!!!!