Bronchoscopy VATS/Biopsy

We got up this morning at 4:00 to be at the Huntsman by 6:00 for Trent's surgery.  We weren't too nervous until Trent got all changed into his gown.  Then the jitters started.  We weren't really 100% sure what the procedure was going to be.  Trent had a bronchoscopy a few weeks ago but was only slightly sedated.  We thought that procedure might be similar to what was being done today.  We were only a little bit right.  They did take a look down his throat into his lungs with a video.  Then they went in through his back and side to get a look on the outside of the lungs, within the chest cavity.  They also removed all of the fluid on Trent's lungs to have that tested as well.  While Dr. Carr was poking around in there he found an "implant" on Trent's diaphragm.  This implant might be a cyst or a tumor.  He plucked that off and sent it to pathology.  He then looked at the entire diaphragm and found nothing out of the ordinary anywhere else.

The whole time I was waiting I was not nervous at all.  But then when Dr. Carr finally came to get me I started shaking like a leaf.  I had to keep telling myself to relax because I thought it was really obvious how much I was shaking.  Dr. Carr showed me all the pictures he had taken and there was only one that he was concerned about-the one with the tumor on the diaphragm.  He said that it might be a deal breaker for the surgery on the lung.  Yikes!  They may have to resect the area of the diaphragm where they removed the little tumor.  They would patch it up with gor-tex, the material used to make coats.  There is also a possibility they would have to remove Trent's entire diaphragm and rebuild him one with gor-tex.  That was a lot of information to swallow.  Dr. Carr said that the procedure went very well and Trent was doing fine.  After he left me I took a few minutes to digest everything.  There are some very important decisions hinging on what the pathology report shows.
By Tuesday all the pathology results should be in and by Wednesday we will know what they are and what Dr. Freidberg intends to do about it. 

Trent has done very well today.  He has only a small incision on his back and a chest tube that goes from his side clear up under his collarbone.  It is very painful when he moves but that should all be gone when the tube is removed tomorrow morning.  He was not allowed to ea tor drink anything at all today.  That makes for a long day for someone who loves food as much as Trent does! 

We were lucky enough to have two friends from Providence stop by today.  We had such a great time talking to them both and spending time with them.  It really helped the day go by faster.  We talked a bit about our old neighborhood in Providence and how many people in that area have or have had cancer.  It is astounding!  I have always wondered if there was something there and today I learned of at least three more cases of cancer.  It makes me wonder...

All in all Trent is doing great and is in good spirits.  He will need a lot of rest for the next few days but should be doing almost everything he did before by Tuesday.  So now the prayers begin for a good report from pathology!

Oh. My. Gosh.

After waiting for what seemed like an eternity, we finally got a call from Dr. Carr this morning.  The team in PA recommended surgery and possibly using photodynamic therapy.  I had studied up on this and was familiar with it.  Basically the patient receives a medicine the day before surgery.  Cancer cells have a very high uptake of the medicine.  Then during surgery they shine a red light on the lung and that activates the medicine inside the cancer cell and it causes cell death.  It has not been proven to work in all cases, mostly because sarcoma is so rare that they don't get a lot of chance to try it.  But they are having very good success with it in the mesothelioma patients.  For about six weeks post surgery Trent would be VERY sensitive to light.  An incandescent light bulb would give him a burn. 

There is one small glitch though.  Trent has a very, very small pleural effusion (fluid on the lung) that needs to be tested before we can move forward.  If there is cancer in that fluid then his cancer is incurable.  The surgery would be of no benefit and would only expose Trent to the risks associated with surgery.  So we are heading down today to do pre-op and tomorrow Trent will have a camera put in his lung to take pictures and remove a small amount of the fluid to have it tested.  He will be in the hospital until Saturday. 

In the meantime, we begin the process of getting clearance for Dr. Freidburg to do surgery at the Huntsman.  Yep, that's right!  He has offered to come here to do the surgery because of the difficulty for us of doing the surgery in PA.  We could bring Trent home after 7-10 days in the hospital and we would have our support system nearby.  They all felt like that would be best for Trent and Dr. Freidburg said he would clear his schedule to come to Utah.  I did NOT expect that to happen!  Hopefully by next Wednesday we would have results from tomorrow's procedure and a decision from the administration regarding the "visiting professor".  Then surgery would follow as soon as possible.

We are nervous about how much time this is all taking but would rather know all the ins and outs before Trent has surgery.  We feel like this is a smart move and are focused on a good outcome.  We will be fasting and praying that there is no cancer in that little bit of fluid!  Just one more little, medium, HUGE obstacle to hurdle before the BIG DADDY SURGERY!

My Sentiments Exactly

No News Is NOT Good News

We waited anxiously all day (and all night) to hear what the doctors from Philadelphia would present to us as treatment options for Trent.  I finally called our nurse, Katie, at 5:00 tonight and found out that there was a technical problem and the doctors could not view the scans that were sent properly so they did not discuss Trent's case.  AARRGGHH!!  It is not really any one's fault but I was a wee bit mad when I heard that.  I had to keep swallowing while I was talking to Katie so I could control my voice.  She was just as upset as I was.  I asked what we were supposed to do, with the tumors growing unchecked and his cough getting worse every day.  She didn't really have a good answer for me and I knew she wouldn't.  I have to believe that this is part of the plan for Trent.  That somehow, sometime, we are going to look back at this and say, "Thank goodness it worked out that way."  Right now, I am not seeing it.

Another Twist on the Roller Coaster Ride

We got a call last night from Katie, our nurse at Huntsman.  She was concerned that we did not have all the information we needed to make a decision about surgery.  Apparently the doctors in PA may have some new treatments beyond surgery that would benefit Trent.  In our minds we were making a decision between surgery in SLC or surgery in PA.  Looks like there is a little more on the table.  I called Dr. Karwande this morning and postponed that surgery until the 11th to give us time to hear what the doctors in PA have to say.  Whatever they were going to do would happen next Thursday too.  So it looks like whatever happens, it will happen next Thursday. 

When we got that call yesterday I was a little put off and it took me a few hours to figure out why.  I think it was because our known plan was ripped out from under us. I was just happy to have a plan and be working toward it.  But, I realize now that there is more information we have to have to make the best decision for Trent.  Now we are anxiously awaiting the news from PA. 

What a Roller Coaster!

We have really been through some ups and downs this week!  I guess that is the nature of the beast though.  After the news we got on Monday we were gearing up for a trip back east for surgery.  I was a little nervous about being out there alone with Trent.  What if things didn't end well and I was left alone out there to take care of everything?  What if our kids didn't get to see Trent one last time?   If everything went great, how was the 2 1/2 day train ride home going to be?  Ugh.  'What ifs' are a bummer. 

We went to McKay Dee on Wednesday to get the cardiac MRI that the PA doctors wanted.  No cancer in his heart.  They didn't even have to use the contrast for the last half of the MRI because it was so clear that there was no cancer invading the heart.  I am not sure if it is on the pericardium though, I have not read the final report yet. 

Thursday we headed down to Huntsman bright and early to have a PET scan.  As soon as I left Trent at radiology I went down the hall to take care of a couple of things when I got a call from Trent.  I forgot to tell him to fast before the test!  Oh snap!  The girl who set up the appointment told me not to let him eat after midnight and I totally forgot!  Stink!  We had to go home and try again on Friday.  That meant we got to be there for the grand opening of the new wing at Huntsman.  I stood on the third floor and watched out the front windows while they did the whole ceremony.  I had really mixed feelings about it.  Yes, it is nice and beautiful but I did not want to see it.  I had hoped we would be through with treatment by the time it opened. 

Anyway, Trent had his scan done at 8:00 am and we left around 10:30 to get him some food when he was done.  We had just gotten his precious #14 Bootlegger Club from Jimmy Johns when Trent got a call from the Radiology department at Huntsman.  He had to redo the whole scan (which takes two hours) because they had a computer malfunction.  Aack!  Poor guy!  He had just opened his sandwich to eat!  So we headed right back up to start all over.  Thankfully the results were awesome!  No cancer anywhere except the left lung! 

Earlier in the week we heard from Katie who said that Dr. Karwande had received Trent's scan from when he was in the ICU and he said he could do the surgery!  That put a whole new set of options on the table for us.  So after the scans on Friday we headed over to talk to Dr. Karwande.  He had heard the results of the cardiac MRI and we told him the results of the PET scan.  But before he even knew those he was fully confident he could do the surgery.  He made us feel so good about everything.  We kept bringing up worries about what would take place during the surgery and his reaction was, "Why are you worrying about that?  That is my job.  Let me worry about that and you worry about getting better."  He told us that he would notch out each part of the lung that had cancer in it while preserving as much as he could.  I asked him about the cancer possibly coming back again.  He replied, "If it comes back, we will just do another surgery."  I wondered how many times that could happen and he said that he had done surgery six times on one lung before.  At least this is not our last shot.  The doctor from earlier this week made us feel like Trent had one shot and one shot only.  Dr. Karwande does not think that at all.  While it is still very critical that he have surgery right away, we still have options for down the road. 

Dr. Karwande does not think he will have to remove the entire lung but possibly the lower left lobe.  He will make that determination during surgery.  This time Trent will have a thoracotomy, meaning they will go in under his arm and go in between his ribs.  It is a more painful surgery to recover from so we are a little apprehensive about that.  The last surgery was no walk in the park.  I told him we had seen a radiologist for possible treatment and he did not think that was a good idea.  One thing he said was, "Surgery is benign."  I loved the sound of that. If we can get rid of the cancer with surgery that is the best chance for survival.  The tumors will be sent to the lab in Arizona again for molecular testing.  Then, if Dr. Gouw deems it appropriate, we may do a little chemotherapy to make sure everything is gone for good.   We set up a surgery date for Wednesday morning.  That is the day Trent's case was supposed to be discussed in PA.  We decided that we can change the surgery date if we need to but would feel it out over the weekend.  We have been fasting and praying and we are both at peace.  The logistics make more sense and we feel very confident in Dr. Karwande's abilities.  We will be fasting and praying for Dr. Karwande, his surgical support team, and Trent on Wednesday.  It will be another very big day for us to say the least.  After a 5-7 day hospital stay it will take about 6-8 weeks to fully recover from this surgery.  Hopefully we will have Trent feeling pretty good by Christmas! 

Tornado

Yesterday was, well, a tornado.  A whirlwind of new information that threatened to sweep us off our feet.  We are still trying to process it all. 

We met with Dr. Whipple at McKay-Dee hospital yesterday.  He is the radiation doctor we were sent to by Dr. Gouw.  After meeting with him, radiation sounded like a walk in the park compared to what Trent has been through.  He said that when you radiate the lungs the affect is permanent and that he doesn't radiate sarcomas in the lungs very often.  They usually are not super responsive to radiation-meaning they don't just dissolve into nothing like lung cancers do.

Then we headed down to the Huntsman to meet with Dr. Gouw.  First we met with Amy, the social worker to see about trying an antidepressant for Trent.  It is very common for cancer patients to need some stabilizing medication.  I really think Trent is doing very well-all things considered.  It is just that crazy chemo that made him go insane.  We might try an antidepressant for awhile and see if it helps any. 

When we saw Katie she was all excited saying they had something for us.  Dr. Gouw told us that Trent's case had been discussed in the Monday morning sarcoma meeting and he thought that Trent should go right to surgery.  The Hunstman has recently invited a highly trained cardiothoracic surgeon from Philadelphia to join their team.  Dr. Gouw explained again that chemo was not our best option now and we might revisit it in the future if we have to but then it would only be a clinical trial.  All the the mainstream chemotherapy drugs no longer work for Trent. 

Then we met the surgeon.  Dr. Carr sat down and told us a whole crazy amount of information that kind of blew us away.  First, there is no cancer in Trent's right lung.  Yeah!  Second, the cancer in his left lung is pretty ugly and possibly involves the pericardium (we knew that) and the nerve that controls your diaphragm.  Oh.  Okay...Third, he does not have the skills or expertise to take Trent's case.  He believes there is only one person in the world that can perform surgery on Trent and that is Dr. Joseph Freidberg, in Philadelphia.  Wow.  I am sure that Trent and I both had our jaws on the floor at this point.  That is NOT what we were expecting to hear.  He said that if Trent was a 60 year old man no doctor in the world would perform this surgery, but because he is 38 and has five kids who need him, it is worth a shot.  Trent could lose as little as the tumors, or as much as an entire lung.  There are a couple more tests that have to be done first, a cardiac MRI and a PET scan.  Then those results will be sent to Dr. Freidberg and we could be flying to PA as soon as next week. (I am shaking while I am typing all of this because it is still so overwhelming!)  We may be there as long as a month if all goes well.  We are very anxious to hear from Dr. Freidberg in a couple of days. 

We talked a bit more with Dr. Carr and he explained some of the things that might happen.  He said that Trent would never run again.  Whatever.  Dr. Jones also told Trent that he would likely have a significant limp!  I am amazed at how much Trent has been able to do that he was told he would never do.  So, I am very optimistic about what his life would be like after this surgery.   I said to Dr. Carr , "If we do this surgery, we are not looking for an extra six months, or year or two..."  He immediately said, "No.  If we do this surgery, the goal is a CURE."  Oh my how beautiful that sounded!  We have no interest in going through something this big to "prolong life".  Our goal remains the same as always.  CURE. 

Of course, all of these possibilities are dependant on the results of the testing in the next few days so we are trying not to get too freaked out, nervous, or excited.   Until then, we are praying like crazy!  (When has that ever NOT been the case?) Thank you, thank you, thank you, for all the prayers on our behalf!  We are overwhelmed and grateful.