Good News

We went to see Dr. Mitchell, the cardiologist, today.  We spoke for quite a while with his Nurse Practitioner first.  Finally Dr. Mitchell came in.  The first thing he said was, "You are anemic, I can see it in your face." Oh, 'hi', good to see you too Dr. Mitchell.  :)

Dr. Mitchell had good things to say though.  He is not overly concerned about Trent's tachycardia (rapid heart rate) because there is nothing really that they can pin it too.  There are so many things going on that could all cause tachycardia.  He believes Trent's heart is healthy and that once he is healed his heart rate will return to Trent's normal.  He also said that Trent may have a little faster heart rate than most but that might be his 'normal'.  I am not sure that is the case because in all the treatments for the last two years, we have never noticed a fast heart rate.  But, it is certainly possible that after all the Trent has been through, especially losing a lung, that his heart would beat faster, permanently.

The dose of Metoprolol is going to stay the same for now.  We are anticipating weaning Trent off of it in the future, maybe six months or so.  While we were at the office, Trent's oxygen was only at .5 L/hr and although he had to stop and rest, it wasn't killing him to walk around.  He was tired by the time we got home and not feeling too great.  I think we need to work on the anemia and hopefully that will perk him up some.

Trent has really been trying to do everything he can to get better.  Yesterday he got on the stationary bike for 1/2 hour, twice.  He wasn't really pushing himself at all, just going through the motion, but I was very happy for that.  Each day he seems a little bit better.  He has moved himself downstairs now and sleeps in his own bed.  That happened a few days ago and although I was reluctant, I couldn't be happier.  Me, Trent, and nineteen pillows don't fit in a queen bed very easily.  Our king bed is so much better and we have both slept much more.  The last few days he has only had his breakthrough pain medicine once every 8-10 hours.  That is so much better than before!  His incision, while it is big and ugly, is healing beautifully.

Dr. Mitchell and his assistant were particularly impressed that he was doing so well after such a big surgery.  Thursday marks four weeks since the surgery.  The last month has been difficult but I think we are almost able to see that there might be an end to all of this ugliness.  We are anxious to hear exactly what the next step in the plan will be and get it going.

Been a Rough Couple of Days

It is sometimes hard to remember that after surgery it is not just getting better.  There are good days and bad days.  Then it is even harder to remember that after a surgery as huge as Trent's was that the progress is veerryy slow.  We are dealing with some mental/emotional issues and that takes its toll on us.

Trent is getting around pretty well now.  He went from using a walker for a few days, to a crutch for a couple days, and has been using his cane for the last week.  He can get to the bathroom unassisted and shower mostly by himself.  I have been carefully washing his back with antibacterial surgical scrub to make sure we don't have any problems at the incision site.  It is all healing nicely but is really tender still.

We have also been monitoring his vitals and paying close attention to his heart rate.  I had noticed that his heart rate was staying pretty consistent in the 120's but occasionally would jump to 140.  That is higher than I had hoped it would be after restarting the Metoprolol after leaving the hospital.  Tuesday night I decided I would call Jan at Dr. Carr's office and check in on what "normal" is at this point in the recovery.  Wednesday morning before I got a chance to call Jan, Jenn, Dr. Carr's nurse, called to check on Trent.  I told her about the heart rate and asked about giving Trent some anti anxiety medicine again.  When we left the hospital Dr. Carr told me not to give it to Trent but didn't say why.  I assumed it was because he had done pretty well without it during his stay.  Jenn relayed the info/questions on to Kelly Nagasawe, Dr. Carr's associate (Dr. Carr is out of the country right now).  Somewhere along the line the info got mixed up.  I got a call from a very concerned Jan, wondering why Trent was not being rushed to the Huntsman if his heart rate was 160.  Thank goodness that was not the case!

Dr. Carr wanted Trent to get some labs done to see if he needed blood, which would raise his heart rate.  We had to make the trek down to the medical center to have that done.  Trent was pretty iffy that day and the journey was hard.  Thankfully, the labs came back looking okay.  Really, most of his results were just barely outside the normal range which is not to shabby after all he has been through.  After a call to Trent's cardiologist, it was decided to double the dose of Metoprolol for a few days and see what that did.  I was also told not to give him any anti anxiety meds because those can be sedative and with only one lung, that is not such a smart idea.  So we have been using oils and soft music to try to keep him calm.  It has been a tough go though, the gravity of what he has been through is starting to hit Trent.  As for myself, I try as hard as I can not to think about it.  Too scary and dramatic, so not the life I thought we were in for.

Today his heart rate is much better at 110 but I am still hoping it will get closer to normal.  We see Dr. Mitchell on Tuesday.  Hopefully Trent is feeling better by then.

A Memorable Father's Day Gift

This was the much anticipated surprise! I was so excited to give this to Trent...I had it done before Mother's Day and had to keep it quiet forever! As soon as he opened the cover he started bawling. It was perfect and I caught it all on video too.

Click here to view this photo book larger

I had all the kids write letters to Trent on the pages opposite their pictures.  Then we all got together and came up with 10 fun memories of Trent for the last page.  Good times, good times...

Happy Father's Day!

I have been excited for Father's Day since waaaayyy before Mother's Day.  I love surprises and I have one this year that Trent is going to LOVE!

Trent is the most amazing father.  Before cancer he physically worked his "fingers to the bone" to provide for our family.  He worked hard to give our kids the fun things they deserve like this...

The playhouse Trent built for our kids at our house in Providence.

and this...

Disney 2008

and this...

Disneyland 2012

and this....

10/2011

Since cancer he has worked so hard each day to physically, mentally, emotionally, and spiritually survive.  He is an amazing man and we are so lucky that he is ours!  His kids adore him, they love and respect him, and I would do anything for him.  You have to be someone pretty special to be loved like that.  Happy Father's Day Trent! WE LOVE YOU!

Too Much for One Day

Yesterday was not my finest day.  I woke up grumpy again because my sleep was interrupted several times again.  How did I ever have five kids?  You would think I would be used to this by now.

When Trent woke up he was having one of his "Did we do the right thing?" moments.  He is still sore and tired and struggles to breathe sometimes.  He worries that he will be like this forever.  I keep having to remind him he is only two weeks out from losing a LUNG!  He is going to be sore, he is going to be tired, and yes, it is going to be hard to breathe sometimes.  But guess what? HE WILL GET BETTER!!!!

I was not really up to the task of being the strong one that morning and it set me off on the wrong foot.  I was feeling added pressure because yesterday was Megan's birthday and I didn't have the shopping done for her yet.  She told me she wanted to make her own birthday desert but at 4:30 she changed her mind.  So I was frantically trying to get everything done and get to the store to have everything finished so it didn't all look like an afterthought.  AARRGGHH.  Not my finest day.  I am pretty sure I didn't smile all day long.  Again, AARRGGHH.

Trent could see that I was struggling and kept trying to smile at me, tell me thank you, and that I am beautiful. Nice gestures but I was not receiving them too well.  After dinner I took some of the kids to Smith's to get prescriptions and a movie we could all watch together.  I saw a friend there that I have known since kindergarten.  As we were talking she said, "I couldn't do what you are doing."  My reply was, "Well, no one ever gave me a choice."  She immediately fired back with, "You had the choice, a long time ago!"  She was referring to the pre-existence.  And she is right.  I did have a choice.  I really don't think I signed up for dealing with cancer, who would?  But I do know that I agreed to be tested.  I knew life was going to be tough and I agreed to do it.  I had a choice then, and I have a choice now.

Today is going to be a better day because I choose to make it that way.  Cancer has taken so many things from us, I won't let it take my happiness too.  Thanks for the reminder Mandy, I needed that!

Settling In

We arrived home to a WELCOME HOME AND TO THE LAND OF NED banner the kids made, and an empty house.  That was just right.  Trent got all settled into a comfy chair just as the kids were getting home from church.  After the travel he was pretty sore and tired but in good spirits.

Since then he has been pretty tired.  We both are.  My mom and dad and the kids moved his bed upstairs so he doesn't have to tackle the 14 step staircase just yet.  They had his room all pretty and ready for him when we came home.  I have been sleeping on an airbed that doesn't quite stay inflated.  The last couple of mornings have been pretty hard for me because I am up several times at night with Trent and then I wake up with a sore body because of that darn bed.  I really have to focus on choosing my mood and not letting the lack of sleep get to me.

A very tired Trent, resting in his favorite chair.

As far as the recovery goes, there have been no hiccups so far.  I check Trent's vitals a few times a day and keep him on a strict schedule with the inhaler and breathing practices.  He is getting around better but is still quite sore at the incision site.  I would be too if I had a 14" slash around my ribs!

Trent is having a little bit of anxiety the last couple of days.  He has had some bad dreams and is frustrated about being sick for so long.  Dr. Carr didn't want him to resume his anxiety medicine so I guess we will try to keep him calm with music and some essential oils.  I really need to learn some good massage techniques so I can help him the way Evan did.  That was far better than taking any pills!  

Although the road is slow going right now, I know Trent will "turn a corner" pretty soon.  For the most part his spirits are high.  He continues to amaze me with his strength and determination.  He has sacrificed a lot to cancer in order to stay here with me and the kids.  Amazing, truly amazing.  Man, I love him!

Goin' Home!

Dr. Carr stopped by on Saturday morning to assess Trent.  He said everything looks good and there is no reason to keep him here.  So we are leaving this morning, Sunday.  All the docs keep saying how surprised they are that Trent has "sailed" through this surgery as well as he has.  He is still sore but everything is progressing nicely.  He will go home with oxygen although he is not getting too much.  He is only on one liter at rest and two with exercise.  He has tried to sit without it a few times and does quite well.  As he gets stronger he won't need it any more.  Respiratory came in the other day to test his right lung.  His score was 131.  Normal for a person his size with two lungs is 132.  Rock on, right?!

Dr. Carr also brought news of the pathology.  I was not too surprised with the results given what they encountered during surgery.  The lymph nodes that were removed were all negative, (remember that is a good thing), the large tumor had grown back to about 9 cm and was only 10-15% necrotic (dead).  The margins were negative everywhere except the two spots where the tumor was growing onto the heart and onto the chest wall.  That is not exactly what we wanted to hear, but again, not surprising.  Dr. Carr said that at the chest wall site there was absolutely nothing more he could have taken so there is a chance that he got all the cancer, although the margin was positive.  The heart surgeon who stepped in on the surgery to remove the tumor on his heart was hopeful that all the cancer had been removed from his heart as well.  We are not going to worry too much about the positive margins because in Dr. Carr's words, "It is what it is."  We are going to start radiation in the first part of July and with the expertise of Dr. Hahn from PA, we will hopefully get any cancer cells that are left.  Until then, we are going to pray like crazy and spend every moment we can enjoying our family.   

Yesterday we got a visit from Stephanie, another one of our favorite nurses.  Okay, who are we kidding...we love nurses!  There have been so many who have been so great!  We love to talk to each one and find out about their lives and what makes them tick.  It is really fun and we both feel like we have made some great friends because of that.  

Stephanie and Trent-all smiles!

 Yesterday afternoon Trent finally got in the shower.  He could have done it earlier but it just took too much out of him to do it.  I gave him bed baths but that is just not the same.  He sat in the shower for about fifteen minutes just letting the water run over him.  We got him all spruced up and smelling pretty and he felt so much better.

All cleaned up and no place to go!

 It has been nice to not really have any issues pop up during our stay here.  Each night we picked a movie and relaxed.  Last night we were watching The Vow, not a great movie so don't waste your time.  Nice idea, really lame script.  I think Trent was losing interest and I looked over to see this...

Nice monacle, Trent!

You can hardly see it in the picture but he has one of the medicine cups on his eye like a monacle.  It is nice to have him joking around again. :)