Radiation Oncologist...

Yep...we met with one of those. He was very nice. We liked him. We liked his fancy, up-to-date, state of the art, clean, quiet (well, before Claire got there) office. We were greeted as we walked into the office by a lovely woman who knew Kyle's name, though we had never been there before. She couldn't have been more accommodating. She even turned over the remote control in the waiting room so that Claire could watch tv...I bet she was regretting that decision when Claire chose, "Clifford the Big Red Dog"...does that cartoon have the most annoying voices or is it just me? We waited and watched "Clifford" for about 10 minutes before we were taken back to meet with the Dr.

After getting all of Kyle's vitals, the nurse took us into a room and gave us a bunch of information about radiation and told us a little bit about what would happen if Kyle's goes there for his radiation treatments. Meanwhile, Claire made a huge mess, of a clean office, with some crackers I gave her.

The Dr. then came in and got a little info from us before asking us about Kyle's CT scan and ultrasound. I told him that I had a disk with both scans on it if he wanted to see them himself. He was very impressed with my preparation (insert pat-on-back here) and he excused himself to go and review the scans. He came back in, listened to Kyle's lungs very thoroughly (for which we were grateful...Acinic Cell can metastasize to the lungs) and then escorted us to another room (with different equipment).

In the new room, he carefully examined the area where the tumor was removed. He pressed a bit too hard and the area (which was FULL of fluid...it's called a seroma) started to drain through a small opening in the incision. The Dr. then stood there and drained that sucker for a good 10 minutes. There was a lot of (clear) fluid...most likely saliva that hasn't rerouted itself...and it ran like a river. When that disgusting chore was over, Kyle felt much better.

The Dr. gave us his opinion, but said that he would do whatever Huntsman recommended. He talked to Dr. Jones (Kyle's ENT/surgeon) while we were there and since Dr. Jones feels like he removed the entire tumor, there were clear margins, and no lymph node involvement...the oncologist thinks that Kyle should hold off on the radiation. No radiation? Ummm...ok...but, what about the cancer? He thinks the cancer is gone, but there is no way to be sure. No way. And since Acinic Cell is so rare, there isn't a standard of care. Some doctors do nothing, some do radiation, some do chemo & radiation. There is just no set way of handling this. The Dr. thinks Kyle should follow up with Dr. Jones once a month to make sure nothing else is growing. Then, if it does come back, more surgery and THEN radiation. Hmmmm....we don't know what to think about this. Acinic Cell is very recurrent....VERY. It comes back. It is not nice. It may take 1, 5, 10, 20 years, but it will come back. Maybe we should annihilate the enemy now, while we know where it is. Take it out. Bring it down. Smoke it. Kill it. Finish it off.

Remember the old adage: Better safe than sorry?

We are traveling to Huntsman Cancer Institute in SLC on Tuesday. I want some answers and decisions made. Heaven help me, but I want someone to boss us around and tell us WHAT to do!


*Bubble of fluid (most likely saliva) under his ear, called a seroma. DEE-scusting. Picture is horrible. Taken by cell phone in a moving car. This was taken AFTER the doctor drained it, so you can imagine what it looked like before.

SURGERY

*April 7, 2010
Surgery scheduled for Wednesday morning 9am. Kyle's parents made it into town the night before (Tuesday). We managed to get a bit of grocery shopping done Tuesday night and then get a few hours of sleep before we head to the hospital.

We are met inside the front door of the hospital by a spunky, little hospital volunteer who was assigned to help us. She proceeded to tell us what to do and bosses us around a lot. We like her. She tells us all about what is going to happen and even assigns Kyle a room so that I can use his room # to get food from the cafeteria. (She says it is free...right...what she meant was I didn't have to pay for it right then, but I would pay like a thousand dollars for it on the hospital bill.) Kyle and I sit and wait for a bit. We are nervous. We hold hands and joke around a little, but the air is heavy with worry.

At about 8:30am, they take Kyle back to pre-op and get him changed (well, he changed himself) and get his IV hooked up. I can't go with him, but the tyrant-of-a-volunteer (did I mention, we liked her?) tells me she will come and get me before they take him into surgery.

I didn't wait long and I get to go see Kyle. He is ready to go. The nurses joke that he is already being difficult...it took 3 attempts, 2 arms, and 2 nurses to get the IV in. We meet with the anesthesiologist and chat with him. He is very nice, smart, LDS, young, and has 4 kids...we love him. I remind him that Kyle is the father of 5 and that we need him, so he better not screw up. He assures us that all will be well. Kyle and I share a tearful good-bye (Kyle is such a baby) and I get kicked out just as Kyle's sedation starts kicking in. It is around 9am.

I retreat back to the waiting room and get comfortable. I have books to read, IPod to listen to, phone to talk on, Diet Pepsi to drink and plenty to think about. I figure time will fly by. I was wrong.

Around 11:30am, I am getting pretty anxious and figuring they are close to done. A nurse comes out to tell me that it is going well, but that it will probably be another hour. I am ok with this. We were told it could take anywhere from 2-10 hours because of all of the facial nerves.

12:30pm...no news.

1:30pm....still no news.

2:00pm...this is getting ridiculous. A nurse comes out to tell me that Dr. Jones is "closing" and it will be about 1/2 an hour before he comes out to talk to me. I am so relieved. I am too wound up to do anything, so I just sit there and stare at the door that reads: "SURGERY".

2:30pm...no Dr. Jones. I start getting worried.

3:00pm...no Dr. Jones. Now, I am in total panic mode. All sorts of scenarios start running through my mind. I calm myself by listening to the Mo-Tab Choir on the IPod. It works.

3:30pm...still no Dr. Jones, but the nurse finally comes out again to tell me that surgery has been over for half an hour, but that Kyle hasn't woken up from surgery yet. She tells me that Dr. Jones won't leave him until he wakes up. So, I get to wait some more.

4:00pm...7 hours after taking him into surgery (the longest 7 hours of my life), Dr. Jones comes out to talk to me. He tells me that Kyle is fine, just won't wake up. I tell him that is normal...he never wants to wake up at home either. He tells me that he was able to remove the entire tumor without cutting it and that he was able to remove a large "cuff" of normal tissue around the tumor. He also checked his lymph nodes, but they looked perfect and he didn't need to take any. This is all wonderful news, but when can I see my husband? "Soon", he says. I choke up when I try to thank Dr. Jones and he understands. How do you thank a man for doing what he just did? He operated for HOURS to save my husband's facial nerve and quite possibly, his life. I could have kissed him full on the mouth, but I resisted. Instead, I shake his hand with tears in my eyes and I am barely able to utter the words, "Thank you."

4:15pm...I am escorted back to see my husband. Dr. Jones had told me to be prepared because Kyle would have a large "indentation" in the side of his face. He did. It was large. He also had an incision that ran down the front of his ear and then up the back of his ear...it then hung a left and came half way down his neck. It took me a second to take it all in, but after that I just went about taking care of my husband. He was still totally out of it...TOTALLY. I have seen him after surgery before, but this was a whole new ballgame. I hold his hand and tell him he is ok. Several times he opens his eyes for a few seconds and breaks my heart with the fear I see in his eyes. I assure him that I won't leave and that he is fine. It was hard to see him like that and I will leave out all the gory details(But let's just say that Kyle is not a fan of having his bladder emptied without his consent. Enough said.) The anesthesiologist tells me he is so groggy because they weren't able to use the normal combination of medications to knock him out. They usually use a paralytic and sedative together, but because they were using nerve monitors to track Kyle's nerves, they couldn't use the paralytic. They just had to put him "way under".



5:00pm...Kyle is taken from post-op to his room. He has no idea this is taking place...still out of it. The nurses settle him in and make us both comfortable.

6:00pm...the lovely nursing assistant brings me a dinner tray. Bless her heart. I hadn't eaten a thing all day and I was starving, but didn't realize it until that moment. Kyle is still sleeping. I make 1 million phone calls.

7:00pm-2:00am...Kyle is still sleeping. I am watching him like a hawk, but he isn't doing much. He did wake up long enough to vomit. That was nice of him.

2:00am...Kyle wakes up. I mean, really wakes up. He opens his eyes and I can tell he is really in there and understanding what is going on. I tell him about the surgery and what has been happening. He is in a lot of pain and the nurse puts a shot of something in his IV...back to sleep he goes.

6:00am...We both slept for 4 hours. Awesome. I am feeling much better and Kyle is really awake and thirsty. He drinks some water, picks at his breakfast and gets another dose of pain medication.

8:00am...Dr. Jones comes to check on Kyle. He decides that Kyle's drain is still putting out too much for him to be able to go home. He says he will be back at noon and if the drain looks better, Kyle can go home. Kyle gets out of bed for the first time in almost 24 hours. He is in pain and still groggy, but feeling much better.

12:00pm...Dr. Jones returns. The drain looks great. Kyle looks great. He can go home. Yippee!!! Dr. Jones tell us that he will call when the final pathology report comes in.

It took Kyle several days to sleep off the anesthesia. He was in a lot of pain, but handled it well. It was hard for him to eat because he had so much pain in his jaw and also because when he eats and salivates his face swells up. Because the dr. removed 3/4 of his parotid gland (largest salivary gland) his body has to figure out how to reroute the saliva from what is left of the gland. We (Kyle's parents and I) force him to take it easy, eat, and rest. He doesn't like being told what to do...he is a pain in the butt.

*April 12, 2010
First thing in the morning, Dr. Jones calls. The biopsy was right. Kyle has Acinic Cell Carcinoma. Cancer. Cancer. Kyle shuts down and goes to bed. He doesn't want to talk about it. I go about getting the kids off to school. I hold it together until I talk to my sister, Kathy. I called her from the car after I dropped the boys at school. I told her the results and we talked for a minute. When we got off the phone, I sat in the car and cried. I had to pull myself together because Ansley was home sick from school and I didn't want her to see me losing it. I come in the house and have to give Kyle's parents the bad news. What crap! Kyle eventually gets out of bed and we slowly start talking about what is now...our life.

I have to do something...anything...so, I start making phone calls. I call the Huntsman Cancer Institute in SLC. They see Acinic Cell Carcinoma once or twice a year (stupid, rare cancer) and they want to see him in 2 weeks. We start making plans for what needs to happen. The process begins.

Life has to go on. We have to fight. This is war.

I started this blog because...

everything has been happening so fast and we have already started forgetting details. I wanted to have a way of documenting this whole process/journey and thought this would be a way for family & friends to follow along with us. So, there will probably be tons of details that mean nothing to anyone but Kyle and I, but I want to have documentation of everything. So here goes...

*Friday, March 12th (aka my b-day):

Kyle has a doctors appt. with our family doctor. He had told me a short time before that he had a bump on his face that was bugging him. It didn't hurt, but it was starting to bother him. I had not planned on going to this appt. with him, but that morning when I woke up, I "knew" that I should go with him. It would mean that I wouldn't be home to get Eli off the kindergarten bus, so instead of trying to make arrangements for him, I just didn't send him to school (it's kindergarten...what is he going to miss? another macaroni necklace?). Kyle asked me if I was coming with him because I thought he was going to die...he was kidding.

The dr. examined Kyle and told us that he could feel a lump in Kyle's parotid gland. He said it was probably an infection or stone in the gland. He ordered an ultrasound to get a better look, but basically told us that it was nothing to worry about. So, we didn't. I couldn't even remember what the name of the gland was...I knew it started with a "p", but that was about it.
Boy...little did I know that Kyle's right parotid gland was going to become our arch enemy!!!

Parotid Gland: The largest of the 3 major salivary glands.

*Thursday, March 18, 2010:

Kyle goes for his ultrasound. It was quick and painless and we still thought that this was no big deal.

*Monday, March 22, 2010:

Dr. calls. He got the results from the ultrasound, but wants a "better look". He wants Kyle to have a CT scan with contrast. Ugh. Now, I start to worry a little. Luckily, he is able to schedule the scan for 2 days later.

*Wednesday, March 24, 2010 (aka Josh's b-day):

Kyle goes for this CT scan accompanied by his hovering/controlling/obsessive wife. Scan is quick, no big deal.

*Thursday, March 25, 2010:

Dr. wants Kyle to see a ENT and he is sending over the CT results to him. Ok...now I'm freaking out. Kyle's calls the local ENT and he has an opening the next day. Still, we are clueless as to what we could be dealing with.

*Friday, March 26, 2010:

Kyle meets with Dr. Jones (ENT). I went with him, but ended up at the pediatrician with Eli (strep throat...again) and missed Kyle's entire appointment (very frustrating for a control freak of a wife). Dr. Jones explained that according to the CT, Kyle has a mass in his parotid gland. Most parotid tumors are benign, but he needs to do a FNA (fine needle aspiration (biopsy)...look at me and all my medical talk!) to find out for sure. He got approval from the insurance and went ahead and did it right then and there. He told Kyle not to worry, that it was probably benign and that he would call with the results when he got them. Still, we are trying not to worry, but both of us have an "uneasy" feeling...not good.

*Tuesday, March 30, 2010:

Kyle is getting ready to leave for work when Dr. Jones calls with the FNA results. The FNA results came back "suspicious" for a rare form of salivary gland cancer called Acinic Cell Carcinoma. Dr. Jones is still optimistic because Acinic Cell Carcinoma cells share characteristics with other benign types of tumors. He tells Kyle that regardless of what the tumor is, it needs to come out...surgery. He is very kind and tells Kyle that he can do it as soon as the following Wednesday. Kyle agrees and schedules his pre-op appt. for later in the week.

Kyle and I talk for a minute about it, but he is literally leaving for work, so off he goes, leaving me in total shock. I had controlled my urge to "Google" up until then, but that night I spent hours on the internet trying to find out anything I could. I eventually came across a website and forum dedicated to parotid gland tumors. I hit pay dirt. The people on the forum were so knowledgeable about a pretty rare condition. I couldn't find squat about parotid tumors on the internet, but the people on this forum knew EVERYTHING and were so helpful. I immediately started asking them every question I could think of and they would answer day or night. These people are all over the world and know exactly what we are going through. It was truly a blessing to find this forum. I will, from now on, refer to these people as "the forum" and I will be referring to them often.

*Friday, April 2, 2010:

We have learned a lot more about this surgery (parotidectomy), and the risks from the forum. The forum encouraged us to find the most experienced head and neck surgeon that we could. Removing a parotid tumor can be very complicated because the gland is surrounded by facial nerves and there can be permanent damage if a nerve is damaged. Also, with a suspected malignancy, the surgeon needs to be meticulous about getting the entire tumor out without cutting it or "spilling" any of the tumor cells to control the spread of the cancer.

Kyle has his pre-op appointment with Dr. Jones. We are a mess! Everything has happened so fast and we are second guessing everything. We love Dr. Jones and felt good about him doing the surgery, but wondered how experienced he was with parotidectomies. We peppered him with a million questions. He answered every question right and set our minds at ease. We told him we may seek a 2nd opinion, but we are keeping the surgery appointment.

Kyle puts in a call to a former neighbor of ours who is a nurse at a large hospital in Las Vegas. Her new husband is doing his residency in Las Vegas and he tells Kyle about a ENT there who is the best of the best (we will call him Dr. Busy) when it comes to parotid surgery. Kyle calls Dr. Busy's office and is told that the earliest he can be seen is in 4 weeks (hence the alias, Dr. Busy). We are not thrilled by this, but are still having doubts about our small town ENT. Our friend's husband decided to make a call on our behalf and talks to Dr. Busy himself. Dr. Busy agrees to see Kyle on Monday (this was on Friday). We are very happy about this!

*Monday, April 5, 2010

We head into Vegas for Kyle's appointment with Dr. Busy. Kyle had worked all night & Claire was up puking all night. We are all a wreck, but off we went. We even got there a little early so that Kyle could fill out paper work. Well, we waited and waited and waited...over 2 hours. Claire was sick and raging with fever and Kyle could barely keep his eyes open. By the time we saw Dr. Busy, we were at our wits end. Dr. Busy walked in and said, "Wow, that is a rare tumor you've got." The appointment went downhill from there. He agreed with Dr. Jones that the FNA could be wrong, but that the tumor needed to come out. He said he was backed up with surgeries and couldn't do Kyle's surgery for about 4 weeks, but that it was ok because Acinic Cell Carcinoma is a "slow growing" cancer. Awesome. We will just let this potentially cancerous tumor fester in Kyle's face for the next month until you can squeeze him in...no thank you. We left feeling totally defeated. We had no idea what to do. Here we meet with the "skilled" surgeon and don't feel good about it. It is a couple days before Kyle's scheduled surgery and we are more confused than ever.

That evening, after talking to several family members and friends, we asked if our friends Paul and Dennis could come over to give Kyle a blessing to help with the decision. They came right over (well, after the NCAA B-ball Championship game...we have priorities) and gave Kyle a wonderful blessing. Then, Paul & Dennis assisted in Kyle giving me a blessing. By the time everyone left, we knew what to do. We knew that Dr. Jones was the doctor for us. He is a wonderful man who has a "light" about him. We felt that he would be open to inspiration on Kyle's behalf and that he would be guided during the surgery. We will take that over "skilled" any day of the week.

Once we made the decision, Kyle put in a call to his parents. They offered to come and stay with the kids so that I could be with Kyle at the hospital. We gave them very short notice, but they told us that they would be there the following day. We are blessed.

Wednesday, March 7, 2010:

Surgery day. To be continued....(this will require a post of it's own...kyle + anesthesia = hours of stress for the wife)

A blog I never thought I would start...

Well, it's true.

Kyle has cancer.

Kyle...husband, dad, best friend, honey, eternal companion, son, brother, uncle, breadwinner, handyman, patriarch, cub scout leader, laundry-man, mechanic, public servant, football coach...our everything...EVERYTHING...has cancer.

Cancer...I hate that word. Nobody wants to say it in front of us...it is spoken in hushed tones...everyone talks around it, but I don't want to give cancer that power.

I want to shout it from the rooftops...
CANCER! CANCER! CANCER!

It is ugly, it is mean, it is evil, it is stubborn, it is destructive, it is deadly, but...It will NOT beat us.

Kyle is going to kick cancer's A**!!!

Get ready stupid Acinic Cell Carcinoma...Kyle is coming for you.

*whole, long story coming soon.