My Life's Journey with Melanoma

Alot of things have happened....and I'm a slacker!

2011-11-06T09:39:00.000-07:00

It's been a while and some things have happened that I should update those that follow. I have had good luck with treatments and my scans have been clear (up to this point!) The major problems have been with my sinus'.

I had surgery on my nose to correct a deviated septum (which I also had corrected when I was 16) and to clear out my sinus' so I could breath. I was breathing at night like I had sleep apnea but I did not have sleep apnea. I was having problems sleeping at night which was corrected after the surgery. I then started to have problems that I thought were related to allergies. The problem was that my nose would plug up but nothing I took (allergy pill-wise) would clear up my nose. I could not sleep at night and it was very unpleasant and gross! The nose doctor ( Dr. Riddle) said he could clear it up pretty quick by simply giving me a topical steroid to put in my nose. The problem with the steroid was that I can not take those while on my clinical trial. Dr. Riddle decided that the best thing was to go back in and clear out the nose. Dr. Riddle also said I had several "polyps" that were also causing problems when I nose would "plug up". After surgery, I was much better and could breath a lot better. I rinse my nose with a saline solution twice a day and that seems to keep me breathing much better.

I have been playing basketball twice a week for a while now with a bunch of great guys from church. We have a lot of fun and it is great exercise for me and keeps me active. I play because it lets me know that this "disease" is not getting the best of me. I am not letting it slow me down and by playing each week, I feel like it is not limiting me in my abilities. A couple of weeks ago, I played basketball on Tuesday, took my physical fitness test for work on Wednesday, and played basketball again on Thursday. Normally, after playing basketball and sitting down at work, I stiffen up a bit and it's pretty normal. On Thursday, I noticed that my left side & abdomen were really sore. It was noticeable on Thursday and got worse on Friday. I told Nicole who initially reminded me that treatment was coming up in a couple of weeks and that is normally when I had "issues". Friday was really bad and I thought I was going to end up going to the ER. One of the side effects with the drug I am getting for treatment is colitis. The left side of my abdomen was really sore over the weekend so on Monday, Nicole called Dr. Grossman's office at Huntsman and told them what was going on. I went up to the doctor on Tuesday to have the doctor look at me. Dr. Grossman was worried that I had colitis and decided the best treatment was to admit me to the hospital and have a colonoscopy done immediately to see if it was colitis. The issue with colitis is that if the colon ulcerates and then perforates, you could die! I did not want that to happen.

Here is what I learned about colonoscopies. The procedure itself is no big deal! You are asleep well before it and don't feel anything during or notice anything different after. The bad part is the "cleanse" before the procedure. I have decided that it is how they get war prisoners to talk, not waterboarding! I had to drink a gallon of the cleanse fluid (Go Lytely) to "affect" the cleanse. I started drinking the fluid at 8 pm and had to drink the entire gallon by midnight. The amount to drink in that short of time is hard enough. To make it worse, once the "fluid" takes effect, you can't really get that far away from the toilet and you are running back and forth. I would go to the bathroom, come out and drink a glass of fluid, then run back to the bathroom. It definitely works quickly and does it's job! I finally was able to get some rest about 1 am but woke up at 4 am to use the bathroom again. The other bad part was I did not even get the procedure until 3 pm the next day! I developed a really bad headache because I got dehydrated and was getting very hungry.

The colonoscopy showed my colon was fine so they were not sure what was causing all the pain in my abdomen. Dr. Grossman decided that because I was coming back the next Tuesday for scans, he would send me home and wait for the scans to see if they showed anything. It was another time I went to the doctor to find out what wasn't wrong with me not to find out what was wrong with me!

Since I had missed three days of work and really didn't feel that great, I decided to take the rest of the week off. Saturday I woke up and my left side hurt and the pain was higher in my abdomen. I woke up that morning because I had a dream that my stomach was hurting worse and in my dream, it hurt bad enough I was falling to the ground. It was funny to me that when I work up my stomach actually hurt worse. It hurt really bad all day Saturday. It would get worse when I did any type of activity. As I sit here today writing this, it hurts really bad. The pain is much higher than when it started to bother me and I really hope on Tuesday that the scans show something causing it or that we find out soon what is causing the issue.

I need to send a quick thanks out to Yolanda for giving me some tickets to go to Las Vegas and see the IRL race. Nicole was able to get me an autograph from Danica Patrick! Nicole also got several photos of her as well! This was on Friday during qualifying and Sunday was the race with the bad wreck where Dan Wheldon died! We had tickets but did not go because I wanted to leave to go back home sooner than the race would be over.

I appreciate everyone's concern and prayers! Hopefully this gives you a quick update as to where I am and how I am doing!

Wow I Hurt! Some of the Side Effects!

2011-07-24T22:47:00.000-06:00

Since my last infusion, I have noticed changes a lot earlier in this round than normal. I usually notice "issues" near the end of the treatment cycle. I have noticed more and more that I am forgetful. I have trouble remembering names and every once in a while I forget what I am talking about. It could be just my age as well as the drug.

I have been playing basketball twice a week to stay in shape and to stay active. I have been doing this for over a year. Just in about the last month, I noticed that I get very sore especially after sitting for more that about 30 minutes. I wake up in the morning and my joints are very sore. My back will be stiff, my shoulders will be sore, and by hips, knees, and ankles will be very sore. It makes it difficult at times to simply walk. Walking up and down the stairs is also very difficult. I have noticed that places that I have previously injured are also more sore than usual. I have also noticed that when I sit and put my arms over my head, my feet will go numb and my hands will go numb. Sometimes, if I put too much pressure on my arms or legs, they will go numb or "go to sleep".

I know that I am in a fight. I also know that my daughters know when I struggle. They don't say anything but I know it is "taxing" on them. I also know that I am showing them that there are two ways to look at things. You can look at things as a punishment or simply as a challenge. You can choose to sit back and let the punishment lead you or you can hit the challenge head on and fight. I have said all along that I was not going to lay down and let this define me. I have been hit twice and I will fight until this war is won. It may not be "won" the way many think but I know that I am teaching my girls how to fight and win!

I have yet to find any where that Life is suppose to be Fair. The World has decided some how that everything is be fair. I also believe that people have warped the definition of fair. No where in the definition does fair does it say equal. The Gospel does not promote the idea of everyone being equal. Yes we were all created equal but Life is not equal. If it was designed to be, then everyone would make the same amount of money, live in the same size house, drive the same number of cars, and go through the same challenges. That is not how Life is. My challenges are my own and the way I choose to handle those however I see fit. I have decided that though my challenges seem tough, I can not judge others as being less than mine.

I hope that the way I handle my challenges sets the example to my girls letting them know how to fight and how to handle challenges with dignity. Challenges don't have to define you and don't have to stop you from fully enjoying your life. Challenges can be those things that bring meaning to your life and ultimately the happiness you are looking to have in your life. I know that my challenges are a way for me to test my strength, heart, mental toughness, and my strength of Spirit.

How I love my life! How I love my wife and 4 beautiful girls!!! Life is great!

This treatment I felt like a pin cushion!

2011-06-12T23:11:00.000-06:00

It's been about a week since I completed my latest round of treatment. Of course I went up on Thursday for blood draws and CT scans. About three weeks ago, I was at UVRMC getting an MRI of my back. During the last three months, I have experienced pain in my hip especially if I sit down for more than about a half hour. The pain will radiate down my right leg. Nicole spoke with Dr. Reichman about it and he wanted the MRI.

So, I tell this because I was given contrast during that MRI and had to have an IV started. When I went to HCI on Thursday, I went to the lab to get my blood draw. Normally, to prevent getting "stuck" multiple times, the lab will leave the IV in until I come back on Friday and get the infusion. After leaving the lab, I went to CT. In CT, I was told the IV I had would not work because it was in my hand and the test that was ordered required a larger needle and the IV to be above my elbow. Unfortunately, the tech missed the first IV, in my left arm, but was able to get the second in my right arm. The problem with it being in my right arm above the elbow is it hurts if I leave it in. So, I had to have it removed. I was feeling like a giant pin cushion.

On Friday, the good news was that the scans were all clear!!! It has been now about a year and a half with clear scans!!! As my wife posted on Facebook, "My scans are clear. I'm living!" My wife and both felt that Dr. Grossman was much better at being concerned with us and less about the disease. Nicole asked him if the fact that the trial drug had been approved had any impact on my treatment. Dr. Grossman said that because "Yervoy" was only FDA approved for stage 4 melanoma patients, it would not stop my trial or impact it in any way. Nicole also asked him what happens at the end of three years as well as what happens if I got melanoma again during the trial. Dr. Grossman said if I did get melanoma again during the trial or a short time after the end of the trial, they would probably try to get me "unblinded" because if I was getting the drug it would effect what the next treatment step would be. In regards to after the trial, Dr. Grossman said if my scans stayed clear throughout the trial, he would suggest going to once a year scans.

Nicole asked if we should get the girls genetically tested for the "melanoma gene" and both him and Dr. Noyes (who I say a week after treatment) both said no.

Dr. Grossman, who had not seen my hives, saw a picture and said it was possible the hives were a reaction to the drug so I needed to watch for that after receiving the next dose.

After speaking to the doctor, we went to the infusion suite. I checked in and got comfortable in the infusion chair. The nurse came over to start the IV. Of course, she missed the first one in my left hand. She not only missed but it hurt really bad. Luckily she got the second one okay and I was saved but it did not stop the feeling that I felt like a giant pin cushion!

When the nurse came over to give me the benadryl, I reminded her that it burned if pushed fast so she was great and pushed the benadryl nice and slow. This time it didn't bother me as much as usual. The treatment went very well. It did feel like we were at HCI all day ( we got there at 9:30 am and left at 4 pm). Like usually, I was worn out after treatment.

About two weeks before treatment, I noticed that my joints were feeling very stiff ( a known side effect of the drug). I noticed it the most in my knuckles, knees, hips and ankles. I made the comment to Nicole that it is always just before the next infusion that I usually start noticing different difficulties. On Saturday, instead of being very tired, I was very "achy". I have never felt like that until this treatment. The other interesting part was that I noticed right after treatment! I was "achy" for about two days.

Again, I count myself very lucky! There are so many people spending time at HCI that are much sicker than myself. I always count my blessings that though I have had cancer twice, I have been able to catch it quick, fight it and stay doing what I do best - loving life!

Another indicator I'm getting the "good" stuff!

2011-05-22T13:49:00.002-06:00

I'm just getting ready for my next infusion. The last three weeks have been quite eventful. About three weeks ago, I began having pain in my back and stomach. It would come and go. I began thinking that if I could just get to my next treatment and scans, I could find out what was going on. I had never been in that much sustained discomfort ever without knowing what was causing the problem or pain.
Last Thursday, I was at home and suddenly my tailbone felt like someone was attempting to pull it out of my back. It hurt so bad I couldn't stand up. I sat down and the pain went away. When I sat up to get into bed, my back began hurting. I woke up on Friday and felt OK so I went to work. I was OK sitting down but as soon as I stood up for any length of time, my back would hurt so bad I could not move! My wife, Nicole, had already called Huntsman to ask Dr. Grossman what we should do. About 3 pm, Nicole called me to tell me Dr. Grossman wanted me to go to the ER to have scans done.They were worried the cancer may have come back and was now in my bones. Nicole and I went to UVRMC ER and 7 hours later, learned that it was not the cancer but they did not know what was causing the pain. Over the weekend, I felt nauseated as well as in a great deal of pain. On Monday, I went to see Dr. Brett Thorpe, a Gastroenterologist, regarding the pain. Dr. Thorpe felt the pain was coming from problems with my esophagus or stomach. Dr. Thorpe decided to do an EGD. On Thursday, I had the EGD and found my esophagus, stomach, and duedenum were inflamed and ulcerated. I began taking medication prior to eating that seems to help.

I continued to have some pain in my back. We did some more tests and found that my gall bladder was bad. They removed my gall bladder right before Spring Break. About a week before Easter, I began to break out in hives. I was miserable. I went to HCI and learned it was not directly related to my treatment. I went to a dermatologist at the U of U and learned that they did not know what had caused the hives but it could be related to an infection. They began me on a large dose of antihistimine that I had to increase to get the itching to stop. The medicine made me really onery and my wife said I had no filter. On Thursday, prior to Easter, I found out at another doctor visit that I had a sinus infection. After taking the antibiotic, the hives finally went away.
I have been able to continue doing everything. I play basketball twice a week and umpire. I recently umpired my first D1 baseball game and just umpired the 3A championship game.
I know this entry is late, but you can see it has been busy. I am getting ready for my next treatment in a couple of weeks.

What We're Doing at Home

2011-02-06T10:01:00.002-07:00

We have been really busy since our Christmas present trip to Disneyland! We had planned to remodel the kitchen prior to the trip but ut it off until after the trip.

My brother, Justin and I took a week off work to get at much done as possible. We got most of the demolition done and framing in that week. We have been working the last two weeks after work to finish all the detail work.
We are currently waiting for the cabinets to be installed so we can install appliances and use the kitchen once again!

It's been a tough job but very fulfilling. My brother Justin has been a great help! Thanks Justin!

To Catch Everyone Up

2010-12-12T12:25:00.000-07:00

Well, I have been a slacker and have not updated the blog in a few months. For that I apologize. Thanks to all of you who care enough to follow my story as I fight this battle in my life!

During the summer, I began to have trouble sleeping at night. Nicole told me I was waking up all the time, similar to someone who has sleep apnia. I was tired all the time and it was really starting to interfere with every day activities. Also, during my initial scans for the new diagnosis of melanoma, we knew that I had a deviated septum. We knew at some point I would need surgery to clear that up. We spoke to the doctor about the issue he advised that we should have surgery between treatments. After the last infusion, we went to see Dr. Seth Riddle and decided that most of my breathing problems could be solved with surgery to correct my deviated septum.

The surgery was on October 19th. I went into surgery and remember getting my favorite drug, Versed, and then getting on the OR table but nothing after that until I woke up in recovery with Nicole. Apparently I spoke with the doctor a couple of times but don't remember any of it.

When I was young, I also had a deviated septum. I always knew that around the age of 16 I would need surgery to correct it. When I was 16, I had surgery. It was a surgery my dad and I laugh about even today. When I woke up from surgery, the nurses wanted to go home. They told my parents that I needed to wake up and use the bathroom so I could go home. I just wanted to sleep. My dad, to get me to wake up, would tap my chest. It became so irritating that I finally grabbed his hand, told him not to touch me again, and then sat up and told them to let me use the bathroom so I could go home. It freaked everyone out because I was getting off the bed and they were afraid I would fall. I went to the bathroom and told them to send me home. My dad always says, when I have surgery, that he will come and help me wake up. I laugh and tell him only if he wants a broken hand.

On that surgery, they packed my nose with gauze. After a few days, I went back to the doctor and he pulled out the gauze. It was the worst part of the surgery. It made me almost pass out because of the amount of gauze they pulled out of my nose. On this surgery, they did not use gauze but a type of stuff that dissolves or your wash out when you rinse your nose. A few days after surgery, and after rinsing my nose several times a day, the "stuff" came out of my nose and I could breath again! It has been sooo much better and I can sleep well at night and breath so much better.

Before my new diagnosis, I was playing basketball from guys in the ward twice a week. I stopped playing because of the surgery. Lately, the guys have been bugging me to come back and play. I decided to begin playing again. It has been great to get out and start running around again!

One of the side effects of the medicine I get from infusion is a rash. About the same time I began playing basketball, I began to itch. It started below my calf muscles. It would itch a lot. It then began to itch under my arms and along my sides. I also began to notice that my underarms began to swell. I told Nicole and she called Dr. Grossman's office. I was about two weeks away from the next treatment but they wanted me to come in. I went in and Dr. Grossman did not find that the lymph nodes were swollen. He did notice a slight rash on my sides below my armpits. Dr. Grossman suggested using a topical cream without a steroid. We applied a benadryl creme one time and the itching stopped.

On Thursday and Friday, (December 9th and 10th) was the most recent treatment. On Thursday, we went up to Huntsman to have scans. We did a few things different this time. We drew labs this time and we only had to have the CT scans and not the MRI. Because I was coming back on Friday for treatment, we also decided to try and keep the IV in overnight so I would not have to get "stuck" again. It made the Thursday visit quick and the Friday visit quick as well. On Friday, we went up and had the IV checked to make sure it was still usable and it was. We then went to doctor appointment. We were called on time but did have to wait in the room for the doctor for a little while. A new doctor came in first to talk to me. It is what I love about teaching hospitals. The new doctors can be funny and it takes all I have not to mess with them. Dr. Grossman came in and said the scans were clear and the labs were good so we could start the infusion on time. With the scans being clear, we can breath again for the next three months!

We went to the Infusion Suite and had the infusion. I was given benadryl, my favorite stuff (NOT), first. The nurse, Syd, was great. She pushed it really slow so it did not burn going in and did not seem to hit me as hard so I wasn't so fidgety. The treatment went fine and we were on our way home on time.

Before going to treatment, I was asked if I wanted to work the Timpanogos HS basketball game at Pleasant Grove HS. I said it sounded like fun and may be a nice break after treatment. I got home and went over to the game. All was great until about the start of the 4th quarter and I decided maybe it was not such a great idea. I got home and I was exhausted. I woke up on Saturday and slept all day. I was sooo tired and found that I ached all over.

While at treatment, a young lady was sitting next to me getting her first treatment. She was a second grade teacher from Bountiful. She was recently diagnosed with lymphoma and was receiving her first treatment. I also saw other people who were very sick from their disease and treatment. I realized that at times I feel many different emotions. I feel lucky, guilty, and sorry at times as I go through this treatment. When I saw and spoke briefly with the young lady, I felt lucky and sorry. I felt lucky that I was not that young and felt sorry that she was so young and what she was going to go through. I also feel lucky as I see other people that I am not as sick as others. I feel guilty also because I am not as sick as other people but I am getting the same treatment (but different medicine) as others and they will be very sick and I will back to work on Monday. I know I am blessed because of when I discovered this disease and how well I have been doing through this journey.

Though I am tired, sore, and don't feel the greatest today, I know I will be ok to go back to work and will be playing basketball again on Tuesday!

Umping - Doing One of the Things I Love!

2010-09-27T08:23:00.000-06:00

I had a great opportunity to umpire the BYU Alumni baseball game Friday at BYU. I have not worked a game in a while and have not used three man mechanics in a while either. It was a very great night and the view is awesome! They decided to play 14 innings straight so we used two crews. The first crew worked the first 7 innings and my crew worked the second 7 innings. I worked behind the plate which I find awesome to begin with and a lot of fun.

I have worried, since my surgery, that umpiring behind the plate would be difficult. My face is still numb on the right side and my right ear is really tender. I worry that taking my mask on and off would irritate that side of my face. I also worry that if I get hit with a ball on the mask that it would cause unbearable pain. I learned that neither was true! I am glad that I took the time to let my face heal as much as possible but I am also glad to get out and umpire and run around a little bit!

It was a great night. The fun part is that both the alumni team and the current team are very relaxed and having a lot of fun. It gives you a chance to talk to the guys and just have a good time! The score, I think, would only matter if the alumni team started winning! On Friday, that wasn't a problem!

BYU does have some young talent that can hit the ball! Guess we will have to wait until the season starts to see how it translates on the field against D-1 pitching!

When People Think You Are Dying

2010-09-27T08:16:00.000-06:00

I received an interesting email from a friend this week. It said he had heard I had relapsed and he wanted to get together and go to lunch. I was really appreciative of the invitation but started to wonder why he thought I had relapsed. I spoke with this friend who told me that he heard through someone else that I was "terminal" and that I only had a few months to live. He also told me that this message had been received by many in an announcement made at a meeting. I was a little shocked! First that someone heard I was dying and second that I mattered enough to have it announced! I assured my friend that I was doing just fine and that I was not "dying". I told him that I had no new re-occurrence of melanoma and that my treatments were going just fine. This made me start to think about life in general and how we communicate!

In regards to communication, I learned how this information was obtained. It was taken out of context by another friend. It is amazing how words can be interpreted by others and how messages sent are not always messages received. I have learned that "cancer" has such a powerful connection with death and not with survival! This connection assists people in interpreting "news" about people they know with cancer towards the "news" leading towards death instead of live and recovery. I have seen many at HCI "living" with cancer. Some are much more sick than myself. Some may even die in the next few months from cancer but all are living at this moment! I have "lived" with cancer for 7 years (almost 11 years now). I have met several people who have "lived" with cancer for over 10 years. Most of us have no idea when the disease may progress or if it will lead to our death. I have learned that "karma" is real and not to mess with "karma"! I don't deny the existence of my disease but I don't give the disease power over my life nor do I tempt "karma" by dwelling on the disease or denying the existence of the disease. I have learned that live is about moments! Lives change in small moments each and every day. One moment deemed bad by the individual can ruin the entire day (like time running out on the Cougars as they lose again! This moment, for some, even threatens their eternal salvation!), or a moment deemed inspirational or good can change the whole outcome of an individuals day (like those inspirational emails we all get and are told to continue to pass on!) Live is about moments, live each moment, learn from each moment, and love each moment - your response to these "moments" define your life!

Treatment's new twist kicked my butt!

2010-09-20T08:45:00.000-06:00

Well, I had better catch everyone up. With my last scans and doctor visit, in July 2010, I was told by the doctor that everything was clear and that we would be back in 3 months. 10 days later, I received a phone call from Dr. Grossman's office that there was some concern with my neck CT scan. The doctor said there were some lymph nodes in my neck that had enlarged (this is not a good sign). The doctor said they wanted me to get another PET/CT scan to see if the lymph nodes were reactive. I went to my appointment at Huntsman. The test consists of getting an IV line, injecting the radioactive tracer, waiting for about 45 minutes, and then getting scanned. After getting the tracer, I waited. After about an hour and a half, the nurse came in and said that there was a problem with the "camera" that she would be back in a few minutes. 30 minutes later, the nurse came back and walked me down a hall and into the basement. I knew something was not normal when she said, "I am so lost as to where we are." (She had told me to follow another gentleman, who were followed downstairs to another part of the hospital that had a scanner.) I was put on the scanner and the test was done. I learned from my wife, following the scan, that they had cancelled the rest of the scans that day because the "scanner had broken." (I think the main scanner had a problem but since they had given me the tracer, they needed to do a scan.) A few days later, I received a call from Dr. Grossman who said the scan showed one of my lymph nodes was "excited". Dr. Grossman said that they wanted me to come in and get a needle biopsy of the lymph node.

This information started a debate. My wife, who is a nurse and works with several different doctors, began discussing this test. The doctor who removed the original melanoma, Dr. Cook, told Nicole to have the lymph node removed. Nicole spoke with Dr. Grossman regarding removing the lymph node and he said we should do the needle biopsy and decide after the results. We went to the biopsy. It was pretty interesting. The radiologist numbs the neck and uses a ultrasound to locate the lymph node and to monitor the needle. The radiologist said the lymph node was sitting on the jugular vein and next to the carotid artery (what a great place for it!) The radiologist then inserts a needle into the lymph nodes and collects cells. The needle is then given to a pathologist, who is in the room, who prepares the slides with the cells and reads them immediately. They do this also to make sure they are getting sufficient cells. This occurred about 5 times. The pathologist would come back in each time and say that she did not find any obvious melanoma cells (good news!) but would need to do some further tests to completely determine the findings. A few days later the doctor called and said there was no melanoma located in the lymph node. Nicole asked the doctor about removing the lymph node. Dr. Grossman said there was no reason to remove the lymph node at this time. Nicole was concerned because Dr. Cook told her to have it removed because the fact that it had been reactive was enough to concern him.

We then decided to get a third opinion. Dr. Grossman is a scientist. He treats and examines melanoma on a daily basis. He may want to see what the lymph node does to collect more data for future reference. I don't think he would jeopardize my health for a second but it is easy to see why he would not want to remove the lymph node. Dr. Cook has some experience with melanoma but it is not his specialty. Dr. Cook obviously sees the lymph node as a risk and thinks the best course of action is to remove the risk. We decided to see Dr. Noyes again for the final opinion. Dr. Noyes is a melanoma surgical oncologist. He sees, examines, and removes melanoma from patients nearly everyday. We decided that we would do whatever Dr. Noyes said to do. (He was either going to side with Dr. Grossman or Dr. Cook.) After seeing Dr. Noyes, he said that leaving the lymph node was the way to go because if he went in to the lymph node and found nothing, he could remove it but I would have surgery for no reason which was a bigger risk. So, the lymph node is still in my neck.

Thursday, September 16, was the date for the new scans. I got a CT scan of my neck, abdomen, and groin and a MRI of my brain. The scans went really well and quick. The only real issue was with the IV. It hurt like H$(*!! The site bruised a lot as well.

Friday, September 17, was the treatment date. My mother, my daughter Allyson, and Nicole all went with me. We got up there a little early so we could get the labs drawn in plenty of time so the results would be back before seeing Dr. Grossman. I also met the new clinical coordinator, John. We went to the lab where they start the IV and draw about 12 vials of blood. I usually make a joke about how much blood they take but this time the nurse made the joke. Starting and placing the IV went really well and she got the blood required. John and my wife were in the room with me. I made the joke that I was light headed from all the blood that was drawn and would need a wheel chair to get around. After getting the labs drawn, we all went upstairs to the restaurant to something to eat. Huntsman has a really nice restaurant with a great view of the valley!

After lunch we went down to the appointment. Dr. Grossman came in and asked a few questions and began looking at the lab results and the scans. Dr. Grossman said everything looked fine but he hadn't received the final radiologist report. He said the lymph node in my neck looked smaller when compared to the previous scan but the radiologist had not given it a specific size. Dr. Grossman said he was going to give me benadryl prior to infusion to hopefully prevent another reaction. Dr. Grossman was aware of my "fondness" to benadryl but said it was the best option at this point. Dr. Grossman said he also wanted me to take benadryl and pepcid for one week following the infusion. This was to hopefully prevent any reaction to the infusion.

Nicole told me that benadryl and pepcid are both histamine blockers and that is why he wanted me to take them.

I went down to infusion. I was taken to a new addition to the infusion suite. Debbie, the nurse, said that they had outgrown the infusion suite. Debbie said the current construction, which is an addition to the north side of the hospital, would include a new infusion suite. I noticed that the chairs in the new site were motorized. Debbie pushed 50 mg of benadryl through my IV. Debbie did it slow to help with my reaction to the benadryl. It didn't take long for my head to go fuzzy!! I then began to get hot. The benadryl also burns going in. My whole forearm was burning!!! After she finished, I could not get comfortable and my legs would itch. It was not very fun. After she started the IPI medicine, Nicole told me just to go to sleep,which I did and it did help. I completed the infusion with no reaction, at least not enough of one to send me to the ER! I was wiped out but doing ok. We went to dinner before going home.

Before going to bed, I took the benadryl and pepcid. I figured I would feel fine in the morning and all would be normal again. It was not quite so simply however. I woke up Saturday and was exhausted. I was having difficulty taking a deep breath. It was not the same as when I had the reaction but it was not normal either. I would run out of breath after just walking across the room. I would be sweating one minute and fine the next. This lasted all day Saturday. I slept Saturday night and figured I would wake up Sunday feeling fine. I woke up Sunday with the same problem. The more I thought about it the more it made sense. I am, by the way, getting a form of chemo. In my research of the drug, it states that the side effects are flu-like symptoms. That is a lot how I felt. I had aches and pains, shortness of breath, hot flashes, etc. It was another reminder that I am fighting cancer!!!

I am feeling good enough today to be at work. I think I will be ok as long as I don't overdue it. I am grateful that I have my family to support me with this journey!!!

It's why we picked this treatment option!

2010-07-18T01:04:00.000-06:00

A lot has gone on the last couple of weeks! I left off with Dr. Grossman telling me the scans were clear. About a week later, Karen (the nurse from Dr. Grossman's office) called and left me a voice message. Karen's message said that she needed me to call her but that it was "no big deal!" I started laughing after hearing the message. Everything that comes from Huntsman is A BIG DEAL!

I called Karen who told me that Dr. Grossman was looking at the CT scan of my neck and it showed some questions about some lymph nodes in the my neck. Karen said Dr. Grossman said that if I was not on the study, he would just watch the lymph nodes but because of the study, I needed to get a PET CT scan to see if the lymph nodes were "reactive". Karen told me that the PET CT scan will be scheduled and I would be given the time. I told Karen that this week was bad because our dispatch center is going live to a new 911 phone system. I had training all week in preparation for the "cut over". I gave Karen some available times and hung up the phone. I then called Nicole. Nicole began immediately asking me a bunch of questions which of course I had not asked. I told Nicole to call Karen, which of course she did.

Nicole was able to schedule the PET CT scan for this past Wednesday (yes in the middle of my busiest week but she was not going to wait a couple of weeks to find out what was going on.) Nicole also spoke with Dr. Todd Cook regarding what we had learned. Nicole also called Dr. Noyes office to let them know what we had learned. I had just been to Dr. Noyes office and told him the scans were clear. Dr. Cook was able to look at the results of the CT scan. Nicole was able to also get a copy of the actual result. Dr. Cook said there were four enlarged lymph nodes in my neck and shoulder. Three were in my neck and one is under my clavicle. Dr. Cook said that he agreed with the PET CT scan but also felt that whether the lymph nodes were reactive or not they should be removed.

Wednesday I arrived at Huntsman at 6:00 am for the PET CT scan. I was taken to a room where they started an IV and drew some blood. The nurse then came back and gave me the "radioactive" injection through my IV. On my last PET CT scan, I also had to drink a liquid but not this time. The nurse then said I would simply sit back and relax and they would come back and get me in about an hour. The nurse then said "Have a nice nap!"

I did fall asleep and when I woke up, I felt that it had to be close to an hour. I looked at my phone to see the time and it had been about 1 hour 20 minutes. I was getting confused. A few minutes later the nurse stuck her head in the door and said they were having trouble with the "camera" and it would be a 15 minutes longer. About 30 minutes later, the nurse came back in to get me. The nurse removed the IV and then took me to the bathroom to empty my bladder. The funny thing about this is every time I get a PET CT scan, I am taken to a very specific toilet when I empty my bladder. I have decided it is because if you turned off the light, my urine just might light up the room!!

When I came out of the bathroom, I found the nurse who said we were going to follow a gentleman downstairs. After we got downstairs, I noticed the nurse was looking around. She then looked at me and said "I am so lost". I then realized that maybe something had happened because I was pretty sure we were not going to the same "camera" she is used to operating. This thought was confirmed when the nurse had difficulty operating the PET CT machine.

The PET CT scan took about an hour. Following the scan I went up to my wife. My wife told me that they had cancelled the rest of the PET CT scans for the day because the machine was broken!!

My wife spoke with the secretary and learned that the results would most likely be available in 24 to 48 hours. Nicole sent an email to Karen asking to let us know the results as soon as possible. Nicole was concerned because she did not know if they would simply call, or we would have to schedule an appointment to get the results. On Friday when we still had not heard the results, she let a message again with Karen asking that we learn of the results, if possible, on Friday before the weekend. At about 6 pm, Dr. Grossman called me. Dr. Grossman said that the PET CT scan showed that one of the lymph nodes was "excited" so he was scheduling a ultrasound biopsy. Dr. Grossman said he was not worried about the lymph node but because of the trial and diagnosis, we needed to be sure because the result could say that we had suffered a relapse or we would need to change course on the treatment. I had Dr. Grossman talk to Nicole as well because I figured if I did not, I would be riddled with questions that I would not have the answer for and there would be no way to call Dr. Grossman until Monday to get the answers.

Nicole did ask Dr. Grossman if it was better to get a biopsy rather than to remove the lypmh node. Dr. Grossman said that it is highly likely the node is enlarged because of the amount of surgery I had on my neck. Nicole said she was still going to speak with Dr Noyes and Dr Cook on Monday to see what they thought as well.

Though we were both discouraged, I told Nicole that this was the reason we chose this treatment option. The trial is what caused Dr Grossman to order the PET CT scan instead of waiting for 3 months until we got the next set of scans. I would much rather know now then to find out 3 months from now that there was a problem!!!

Scans - Long day but Information is Vital!

2010-06-28T01:09:00.001-06:00

This past week was the first scans since the clinical trial and treatment began. These scans are important because they would tell Nicole and I if I was still cancer free. Nicole and I left to go up to Huntsman. To say the least, I was nervous. I feel pretty good and feel like I am doing well but the scans would be key to letting us know that I indeed was still cancer free.

On the way to Huntsman I met a real nice Salt Lake PD motor officer, Officer Whitaker. Apparently the speed limit on the off ramp to Foothill Drive reduces to 45 mph and then reduces again to 40 mph. Apparently I was not paying real close attention, my mind must have been on something else, and I was not paying attention to how fast I was going. I will be paying some money to be used by Salt Lake City.

I still made it to Huntsman. I could not eat or drink anything prior to scans except for the wonderful contrast that I have to take two hours prior to the scans. YUM!!! I did the normal stop at the lab to have blood drawn and an IV started. They take about 8 different vials of blood. Some are for comparison and others are for the study. Everything went well with the labs though it took a litte time to get the IV started, again!

After the labs, Nicole and I went to Radiology to check in. I was getting a CT scan of my neck, chest, and pelvis and a MRI of my brain. We went up the elevator to the 6th floor, from the 2nd floor, to go back down the the 3rd floor. Sounds like we got lost but there are elevators just outside the lab. Unfortunately, you can not get off on the 3rd floor from that elevator to get to Radiology. You have to go to the 6th floor and cross the sky bridge to a different set of elevators to get to the 3rd floor. We we got to the second set of elevators, Nicole's friend from work, Ann, was there. Ann was there getting a check-up on her "possible" cancer diagnosis. Ann had good news, she was not diagnosised with cancer and she was still clear. YEAH!! My wife, so convinced that I was ok, decided to have lunch with Ann. Remember, I am "fasting" for these scans.

I went down and checked in for the scans. Great thing about the scans, I have to fill out about 4 different forms for the scans. Love it!!! I filled out the forms and waited for my turn. I was taken back for the CT scans rather quickly. The nice thing was that I didn't have to change into the hospital attire for the CT scan. The CT scan went very quickly. I am surprised how fast those CT scans are and how useful the information is as a result!!! Funny note - I don't care how many times they give you the contrast for the CT scan, and you know what is going to happen, you still don't get used to it. For those who have not had the pleasure, when they give you the contrast through the IV, it takes a second and then you face starts to warm and it runs down to your pelvic area. Everything warms up and it feels like you wet your pants. The sad and funny part is you really aren't sure if maybe you did wet your pants as a result!!!

After the scans I went back to the waiting room to wait for the MRI. It took a little time but finally they called me back.  This time I did have to change into the hospital attire. I went back to have the brain MRI. The technician told me it would take about 30 minutes for the scan. I jokingly asked him how it could take that line with my "small" brain. He laughed and said maybe it would take 35 minutes!

Have you seen the IHC commercials on TV that talk about cancer treatment offered by IHC? Have you noticed how in both commercials the actor playing the patient has that "lost" look on their face as they are preparing for the scan? That is because that is exactly how it feels!!! Even though you know what the scan entails, you still don't know what will be the result. Basically, you are not thinking about the mechanics of the scan but what will be the result.

I layed down on the machine and lucky for me, because it was a brain MRI, I have to have this "cage" locked over my head. The nice thing is they but on headphones and let you listen to music. The nice thing is the level of the music drowns out the noise of the MRI machine. The technician started the scan. The hardest thing about the scan is trying to stay awake for the scan. For some reason, they get a little picky if you fall asleep.  I don't remember if the technician told me how long the first scan would be but it just kept going and going. Nice thing was, the music was nice and the time went very fast.

After the first scan, the technician told me he would be coming in to give me contrast and then the last scan would take about 7 minutes. I could hear this because he says it over a microphone and through the headphones.   When he came into the room however, the music was so loud that I could not hear him. I know he was telling me stuff but I could not hear him. I also was unable to move the headphones because the cage that was locked over my head. I think the technician finally realized I could not hear him by the end however!

The scan finished and I could finally get something to eat.  We had about an hour before the doctor's appointment. I had a real nice lunch and then we headed to the Clinic C for the appointment. We were right on schedule when we arrived for the doctor's appointment.  We were placed in the room to wait for the doctor and waited. The doctor was WAY behing so we waited about an hour and half to see the doctor. The wait was worth it when the doctor came in and told us the scans were clear!!! As my wife put it, we could breath again!!!

The doctor also talked about the reaction to the last infusion and what he wanted to do next time to prevent it. My wife had told his nurse that I would not let him give me benadryl again!   Dr. Grossman asked me about my reaction to benadryl and then told me he wanted to still give me benadryl. Dr. Grossman said it might be possible to give me a pill instead of through the IV which would make the effects not hit me all at once. I guess I can hack the reaction if I know it will only be once every three months.

Dr. Grossman also conducted his usually body checks and told me that because of the reaction I have been unofficially "unblinded"!!! Dr. Grossman, who doesn't know for sure, said that the reaction would not have happened if I was getting "sugar" (placebo)!!

I think the medicine however is causing some issues for me. I can't be for sure but I know I don't feel completely "normal" (whatever that is for me!). Since the scans, I have had less of the feeling of nausea but I have had really bad heartburn. Last night I woke up because it felt like someone was squeezing my heart and it would not go away. I have thought before how someone passes away in their bed from something like a heart attack without someone noticing. I guess I always thought someone would be thrashing around or yelling for help. Last night, I figured out how. I laid there in pain and did not move or make a sound. I didn't want to bother my wife so finally I got out of bed and found something to take to that stopped the heartburn. All day today though I have had a lot of acid. My wife, three times this week, has made me a "green" smoothie, which normally I drink with no problems. All three times this week it has made me sick and really increased the acid feeling.

I went to church today feeling miserable. After church, we got home and Nicole had made her fantastic potatoe and hamburger crock pot meal. I was able to eat some of that and it really made me feel better. Though I really don't like eating some times, eating the right thing does make a difference!!

That is the latest update. My next infusion and scans are in September!!!

So, maybe I am in a fight?

2010-06-03T20:28:00.000-06:00

Ok, so maybe I've been in a little denial. This happened with my last bout but it took a little longer to happen. Here is what I mean. I was diagnosised, I had surgery, I had test and everything said the cancer was gone. I then began treatment to "prevent" the cancer from returning or to catch it as soon as possible when it did return. But, in my mind, it was hard for me to wrap my head around the fact that I was "sick" or "fighting my disease" because, in my mind, I was cancer "free". That all changed after this last infusion.

I went up for my fourth infusion and last of the first quarter. I have been getting infusions every three weeks for the last three months. After this infusion, I will get infusions once every three months. Nicole and I went up early to get the labs done so that they would not hold us up for the treatment (we have learned that labs ALWAYS hold us up in starting infusion.) For the first time, the nurse was able to start the IV and draw the blood really quick with no problems. Nicole was surprised how quickly I was in and out of the lab.

Nicole and I then went and had a really nice lunch at The Bistro on the 6th floor of HCI. Everything was going really well. We went back down to check in for the doctor's appointment after eating lunch. We were able to get in quickly to see the doctor. The nurse for my last infusion was Karen. Karen told us at that time that she was going to be Dr. Grossman's new nurse. It was nice to see her there during the appointment.

I was still a little upset with Dr. Grossman over what happened with him during my last visit. I was really tempted to tell him everything was fine just to get in and out of the appointment. I also was relucant because, since that last visit, my shoulder was still bothering me and Nicole was able to get me into Physical Therapy for my shoulder. I had been twice (once the morning of this infusion treatment) and had only received stretching for my shoulder. I was relucant to tell Dr. Grossman. We told Dr. Grossman and he was perfectly ok with what we were doing. This visit changed my attitude back to believing Dr. Grossman was concerned about my overall well being.

After Dr. Grossman's visit, I went down and checked in for the infusion. During our last visit, we learned Chris was no longer working at HCI and Andrea was filling in as the Clinical Coordinator until a new person was hired. Andrea, during this visit, said that because we would not be back for three months, it was possible the new person would be hired and in place. She wanted us to be aware that we might see a new person on that next visit so we were not "surprised" again. We also met Andrea's supervisor, Annik, who gave us her information as well so we could contact her if we had any questions.

When I went in to get labs, Nicole and I were doing every possible to make sure all the labs were taken so we did not get held up. I realized, just before they started, that I did not see the tubes that were usually with the paperwork for the trial itself. Normally there are four tubes in a bag that are taken and given to the clinical coordinator to be used by the trial. I ran out and told Nicole to ask Andrea about them. Nicole came in after talking to Andrea and said we did not need those on this visit. What!? Well, right before infusion, Andrea walked down with four tubes in her hand and said she had made a mistake and they did need the four tubes. I laughed. Luckily, these tubes don't need to be checked prior to being able to start infusion. It really did not slow the process down but it was funny.

I was called back for infusion. The nurse introduced himself (Gary was his name) and told me he was new in the infusion center. Gary said that another nurse would be assisting him. I could tell Gary was new because things just didn't run as smooth as normal. We only waited about 30 minutes (it is usually much longer) for the medicine to be mixed and then we started infusion. Everything was going just like all the others. We had 90 minutes for infusion, with vital checks every thirty minutes. No problems.

The infusion was completed and, as usual, they "flushed" the medicine. They do this my taking a large syringe containing what I believe is simply saline, and they inject it into the IV bag. The fluid drains like usual and all the medicine is cleared from the bag and tube. They do this as part of the hour I have to wait and have my vitals checked. Shortly after the "flush" began, I noticed something had changed. My chest began to tighten and it felt like I could not take a deep breath. I didn't say anything at first. I thought maybe it was just me. I then began looking at the IV. I checked it several times. I even looked at the syringe to make sure it was only saline. It felt as though maybe I had received something different than saline. I finally leaned over to Nicole and told her what was going on. Nicole said I needed to tell the nurse. I asked her if she wanted me to stand up and walk over or yell real loud. Nicole got the point and walked over and told Gary. Nicole then looked at my chest after telling the nurse. Nicole said the upper part of my chest was bright red, almost looked like I had a sunburn on my chest.

Gary, being new, walked over and looked at the IV. I could tell Gary was not sure exactly what to do.  Luckily I did not feel like I was in jeopardy. I knew I could breath but I just couldn't take a deep breath. Gary walked over the desk and told one of the other nurses what was going on. Suddenly, four nurses ran to where I was sitting. They unhooked me from the IV and began hooking me up to take my vitals. I was then given oxygen as well. I was told that Dr. Grossman was contacted and was on his way. When Dr. Grossman arrived, he spoke with me for a moment. A new IV of saline had been hooked up and was being infused. Dr. Grossman said it sounded like a reaction to the medicine so he had them give me benadryl through my IV.

Benadryl and I don't get along! Instead of calming me down and making me sleepy, it makes me "wired". I feel like I want to crawl out of my skin. After the benadryl was given, my injection site and bicep on that arm started to burn. Nicole said it was the benadryl. The nurses and doctor were monitoring my vitals and listening to heart and lungs.  The benadryl kicked in and now I was very "fuzzy", sleepy, and get irritated by the medicine. Dr. Grossman then told me that, though he thought it was a reaction to the medicine, they needed to rule out that it was not heart related. Dr. Grossman said that meant I would be taken to the ER at U of U Hospital. Dr. Grossman said it may include having to stay overnight for monitoring. I was beginning to get a little worried!!! A tech showed up and took an EKG. It was really quick but removing the stick on leads was painful.

Shortly after this, Nicole walked out for a minute to start notifying family of what was going on. I overheard the nurses say that Airmed was on the way to take me to the hospital. This was a little bit funny because I was like 100 yards from U of U Hospital. What I learned was that the Airmed team was coming over and would take me on a short ambulance ride to the hospital. When I told Nicole Airmed was enroute, she did not believe me. Then they showed up!!! They began hooking me up to their machines to transport me to the hospital. I could also tell that others in the infusion center were asking questions about what happened. My "situation" was causing quite a "ruckus" in the infusion center.

I was transferred to a gurney and rapidly, I didn't know they could move that fast, taken out of HCI and then into the ambulance, and into the ER. They kept asking me if I was feeling any better or if the symptoms werw still present. The problem was I was so messed up by the benadryl, I really had to concentrate on whether I was still having problems taking a breath!! The breathing issue continued all the way to the ER. Shortly after arriving at the ER, the ER doctor, Dr. Holly, asked if the symptoms were still present.   I noticed that the tightness was now gone!!! My only real problem regarding being comfortable was the fact that I really needed to go to the bathroom!!! I did not want to have a catheter inserted, and I did not want to use a plastic urinal. I wanted to walk to the bathroom and GO!!! Nicole was able to get the nurse to agree to let me use the bathroom. Once I was finished, I felt much better. Now I was just aggravated by the benadryl.

The Airmed nurses had stuck pads on my shoulders and sides to hook up the monitors. Luckily then put them where I did not have any hair. That was great until they wanted another EKG. They must stick on twenty of those pads and, of course, it is right on whatever hair may be there!!! They also took a chest xray. Dr. Holly said that they needed to be sure there was nothing wrong with my heart and that because I had cancer, they needed to make sure I did not have a blood clot causing the problem. They checked some labs and looked at the EKG and xray and determined that everything seemed fine with my heart and it was doubtful it was a blood clot. The consensus was the breathing issue was a result of the reaction from the medicine. Phew!!! I was also released from the ER and was able to go home without having to stay overnight.

Nicole and I drove home, stopping to get something to eat on the way. I was really getting bothered by the benadryl. I was aggravated and sleepy, but could not simply lay down and sleep because of the way the benadryl made me feel.

Nicole was able to get a hold of Yolanda, one of the officers at work. I did not have my phone with me with the phone numbers in it but luckily Nicole had Yolanda's number. We told Yolanda what was going on. She said she would call my Captain, Bob, and let him know I was not coming in on Thursday.

After getting home, I went straight to bed and fell asleep. Nicole said I slept like a rock. I told Nicole that it felt like a slept on a rock. I woke up feeling like I had a cold. I was congested, coughing, and it felt like my lungs were full of "junk". Nicole, who had gone to work, called me and told me to just stay downstairs and rest. Nicole had Mariah bring down a humidifier. Nicole was able to speak to Karen who told Nicole to have me take some Xantac or Pepcid. Karen said it would also help with the breathing difficulty. I took the medicine but it did not seem to help.

Thursday, late afternoon, I had a doctor's appointment with a new doctor, Dr. Nobahara. Nicole had decided weeks earlier that I needed an internal medicine doctor instead of just a family practice doctor. We saw Dr. Nobahara and filled him with everything that was going on. Dr. Nobahara did an exam and told me that he also felt it was a reaction to the medicine.

It was during the day Thursday that it hit me. I had been on cruise control and in denial. It finally hit me that I indeed was sick and that I indeed was in a "fight" for my life and against cancer. Though I had chosen not to do regular chemotherapy, I was now experiencing side effects from the medicine. This was good and bad news. The bad news was that I was now getting a taste of what it was like to get "sick" from chemo treatment. The good news was that I most likely was getting the medicine. I would not have had a reaction to the placebo. The medicine, which has had great results with fighting melanoma tumors, was most likely being given to me. I was most likely getting observation along with the medicine that could make a tremendous different with my overall outcome and assist me in winning this "fight" with cancer.

Third Infusion - Love golf more than treatment!

2010-05-16T21:21:00.003-06:00

So last week was my third infusion. I was scheduled to have the treatment on Wednesday. About two week ago, however, I realized I had paid to play in a golf tournament with my brother, Justin, on Wednesday. I called and was able to move the treatment to Friday. Ya, I know, my health is more important than anything else but how was I suppose to miss golf? A side note, Justin and I played in the tournament at Talon's Cove and finished tied for fourth!

Friday, Nicole and I went to the treatment at HCI. Because I moved the scheduled treatment, my doctor's appointment was scheduled at 10 am but my infusion time was not until 3 pm. Yes, another long day at HCI! Nicole and I planned on being there a little early so we could get the labs drawn in plenty of time so the results would be available when we saw Dr. Grossman. The labs always seem to be what holds us up before the infusion can begin. I went into the lab and the nurse attempted to start an IV. Now I have never had any trouble for nurses to draw blood or start an IV but for some reason at HCI, it ALWAYS seems to be a problem.

The nurse attempted to start an IV in the bottom side of my right wrist. Not only did it REALLY hurt but she had to remove it because it was not a very good IV either. I now have a really nice bruise on my wrist. The nurse then was able to start an IV on the top of my right hand. She pulled about 8 vials of blood to cover all the required tests they need for the trial as well as the doctor and infusion. This made me about 45 minutes late to the doctor.

It was really busy for the doctor on Friday. Because we were late getting to him because of the lab, we had to wait for a little bit before we saw Dr. Grossman. We went over the last three weeks. I told Dr. Grossman that I have been having more stomach issues but everthing else was doing pretty good. I then told Dr. Grossman about my shoulder. He began very upset and alarmed that I had gotten an injection into my shoulder. Dr. Grossman then said there was a possibility I could be taken off the trial because of the injection. Dr. Grossman said taking a steriod was a no no with this trial. I became a bit upset with him. My shoulder is really giving my problems and I told him about all this with my shoulder hoping I could get something done about it. He was sooo upset about the injection that he left without covering my concern about my shoulder. I got the impression that he was more worried about the protocol and trial than my overall health. I have been a little bit upset about his reaction ever since.

Nicole and I also learned that the clinical trial coordinator, Chris Hamatake, had left. We were getting a new person to take over. This caught us by surprise because I spoke with Chris about two weeks earlier (remember the golf tournament) and he made no mention about leaving. It was also a little bothersome that no one called to tell us once it happened. We then met Andrea who would take over until someone else was hired to replace Chris. Andrea was not nearly as concerned with the injection as Dr. Grossman was!!!

We then decided we would go into Salt Lake and eat lunch and hang out until the infusion. Andrea said she would call the monitoring person over the trial and let us know our status on the trial. Andrea said to plan on being back at 3 pm to start the infusion. Nicole also asked Andrea to check the labs to make sure everything was ok so we did not get slowed down starting the infusion. Andrea said she would check on those also. Just as we were leaving, Andrea called and said I needed to have two more labs drawn that were important to check before starting infusion. We turned around and went back to the lab. It took the nurse several minutes to draw the blood. The nurse could not get a good flow of blood from the IV. Nicole said it was because she left the tourniquet on while she attempted to get the blood. We then left and went and a really nice lunch at the Gateway.

We came a little early and checked in hoping we would start on time. We got pulled in for infusion on time but the actual infusion didn't start until about 45 minutes after the scheduled time. This meant once again I would be one of the last if not the last person to leave. The infusion went really pretty good. I am finding that I am very tired after infusion and this time I was not hungry at all. I have found that my stomach is more uneasy as well.

Nicole reminded me, following infusion that I only had 12 more to go!!!

Sore shoulder - Am I falling apart?

2010-04-29T19:18:00.001-06:00

So right after I had surgery to remove the lymph nodes, my shoulder started hurting. Initially, I had a lot of pain that ran down the back of my head, through my neck, and into my shoulder. I thought it was a nerve that was aggravated from the surgery. Problem - it never stopped hurting!!! I then have been working hard on the remodel of my house which probably hasn't helped the pain in my shoulder.

I went to sleep the other night and my shoulder hurt so bad that it kept me awake. I could not get comfortable. The pain was incredible! I woke up in the morning and told Nicole what was happening. Later that day, she had an appointment for me at the doctor. I met with Dr. Mortenson who talked to me and decided that we should inject my shoulder. Dr. Mortenson injected it and it felt almost immediately better! Well, so I thought. A few hours later, though the sharp pain had gone away, my shoulder felt like someone had attached a large rock to it.

Since the shot, the sharp pain is gone but I am still having problems moving my shoulder. I can't lift my shoulder very high and it just plain feels heavy!!! I hope this is simply a temporary thing with my whole medical situation the way it is right now.

I am very appreciative of all the people that will assist me at a moments notice. Nicole called Dr. Mortenson's office and I had an appointment almost immediately. Dr. Mortenson is very mindful of my health and new he could assist me without jeopardizing my treatment.

All I can say is I'm very lucky!!!!

Second Infusion, Boy was I tired after this infusion!

2010-04-23T16:54:00.001-06:00

On Wednesday I went to Huntsman for my second infusion.   Nicole and I took my two oldest daughters, Mariah and Ally, with us because they had not been to the hospital. We went a little early so we could have lunch. My brother's wife, Staci, ended up having her little baby girl Wednesday morning so we also fit in a trip to the hospital to see both of them as well.

We decided, do to the time, to eat at the hospital. There is a small bistro upstairs at Huntsman but there is also a full restaurant as well. It was nice to have some choices as to what to eat and the view from the restraurant is incredible! You can see the whole city and valley. Wednesday was really stormy as well so you could watch the dark clouds roll across the valley as well.

We checked in and went to the lab. They drew the blood samples and started the IV. This time they had no problems starting the IV until they went to flush it the final time. The nurse tried to push the saline but it would not go in through the IV. She checked the IV and it was working. Finally, the nurse removed the saline syringe and found it was not working!!! She got a second syringe and it worked just find.

I then went down to see Dr. Grossman. The visit was great and Dr. Grossman said I was doing just fine.  He asked me a lot of different questions about how I have felt, he checked my skin, and then said he was waiting for the lab results so we could start the infusion. Just before leaving, Chris, the clinical representative, reminded us about a doctor visit about a week earlier. Both Nicole and I had forgotten that I had gotten broncitis!!!

Part of the reason we forgot was because we have been remodeling our house. We have both worked non-stop both at work and then at home with the remodel. We simply have been sooo busy we just plain forgot!!! (More on the remodel later.)

We went down to check-in for the infusion. Just prior to going in, Chris came down and said my testosterone levels were down and the doctor wanted another blood sample. I figured it was no big deal especially with the IV still in. Problem: the nurse could not an acceptable blood sample from the IV!!! The nurse could not figure out why. They were about ready to have to use a syringe to get the blood when they decided they could use a prior sample to do the test that was requested.   I had a BIG smile because I really didn't want to get poked again!!!

The infusion went really good. We did start about an hour and half late but it went really good. Genial made me a blanket I could use during the infusion. How fun was it to wear a BYU blanket on Uof U campus?!!! I met a gentleman and his wife from Farr West. The gentleman was getting an infusion that took FOREVER!!! I thought 90 minutes was a long time!!! It was nothing compared to his. He told me he does that once a week!!!

It is amazing to me how people that sick can talk and get along so well. I think it is because when you are really sick, relationship's matter!!! I know I am no longer afraid to speak to people because life is suddenly too short to care what people might think or that I may never see this person again so why bother!!!

After the infusion, I was sooo tired!!! I drove from the hospital to Red Robin so we could all eat. Nicole looked at me and said maybe it was a good idea that she drove home. I agreed and almost immediately I fell asleep until we got home!!! This may have been due to the infusion but Wednesday was the first day in three weeks that I had not worked and did remodeling. It may have been a combination of both that made me sooo tired!!!

I have also been very grateful for all the support and assistance I have received. With the remodel, people from work and the neighborhood have assisted with moving items at my house, picking up the remodelling garbage, and fixing my fence. This has been a great help because I have learned I just can't due what I used to at the speed and effort I used to do it!!!

My wife, Nicole, and my girls, Mariah, Ally, Cassy, and Chelsea, have been very helpful through the remodel. We have lived in a single room, we have lived without being able to find clothes, we have lost homework, and we have lived in rooms without carpet, but through it all, the girls have been awesome!!! And Nicole has taken care of all the little things to keep the job moving and getting us to where we want to be - HAPPY!!!!

Tired and stomach bothering me a little

2010-04-13T20:55:00.000-06:00

So, Nicole and I are in the middle of remodeling the house. I go to work all day and come home and do work on the house to get ahead of the remodelers. All weekend it is nothing but working on the house. We are getting down to the end but we are also getting to the hardest part of the job. The girls were gone all week and that made it nice with the house being torn apart. Now that they are back, we have no rooms done for them. We are all staying in our bedroom downstairs. We put one bed in the room for the girls. Problem is, that is the next room to get done. We won't get carpet, most likely, until next week, so we are trying to figure out what to do. My sister, Kim, offered her trailer and my brother, Justin, would most likely let us come stay at his house for a couple of days. What to do! What to do!

Lately, probably from not stopping, I have gotten tired real easy. I am used to pushing myself and working to exhaustion, but that simply isn't going to happen right now!!

Now my stomach, for the last three days, has been quite questionable. My stomach has been "queezy" and unsettled. I don't know if it is related to treatment or from the non-stop working that I have been doing. We are at week #2 from treatment and that is when the possible side effects could start so I don't know what to think.

I am looking forward to getting this house done!! It is really looking good. My brother-in-law, Mark, and brother, Brian, have been doing a real good and fast job. My brother, Justin, has been nothing short of a life saver by coming over when I call to give me a hand. Justin did an awesome job on the tile in the bathroom!!! Thanks Staci for letting him come over and help!!!!

First Infusion and a Long Day at Huntsman

2010-04-01T23:02:00.000-06:00

So what a day yesterday!!! The infusion was suppose to start at 8 am. We were told to get there early so Nicole and I arrived at 7:30 pm. We were sent to the lab to get blood drawn and an IV put in for the infusion. The lab tech tried twice to start an IV in my left arm. I asked for the left arm because last time I got an IV in my right arm in really hurt when it was left in all day. The lab tech, Julie, asked the Charge Nurse, Stephanie, to start the IV. Stephanie was able to start the IV in my right hand. Luckily, it did not hurt and was fine all day.

Nicole and I went back to the Clinic to meet with the doctor to get the final "GO AHEAD" for the infusion. We were told that Dr. Grossman was suppose to be in a meeting so we would be seen by his Nurse Practioner, Julie, and then Dr. Grossman would see me right before the infusion would start. It took some time for Julie to make it to our room. When she came in, she began to talk to me about what would happen with infusion and answer any questions. Julie then started a quick examination. Just as the examination started, Dr. Grossman walked in. Dr. Grossman said "Hi" and made small talk and then just sat quietly for a moment. Nicole and I could both tell he was acting a bit strange and seemed to have something more to say. Dr. Grossman then asked, "Did anyone discuss your scans with you?" I said "No." Dr. Grossman sighed and said, "They found a spot on your liver during your last CT scan. I looked at your scan in February and could see it on that scan. It hasn't changed. It is most likely a hemangioma (Liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass that occurs in the liver.). I am not worried about it but the radiologist will not clear it so we can't start the infusion until we have it cleared."

Dr. Grossman then went on to explain that I would need a MRI before we could start. Dr. Grossman was a bit frustrated. Dr. Grossman said he would have Chris, the Clinical Trial Coordinator, arrange the MRI. Dr. Grossman said he hoped we could get the MRI done and still begin the treatment. Dr. Grossman said it was possible we would have to get the MRI and then wait until Friday to start the infusion. Nicole and I went back out to the waiting area until Chris told us what was happening.

Chris came out a few minutes later and was very apologetic. Chris said he was able to schedule the MRI at 2 pm and we could start the infusion at 3 pm. We said that was fine because we had a doctor's appointment with Dr. Noyes at 2 pm so we would try and flip the appointment. We called Dr. Noyes office and they said we could come down and, even though we may have to wait, they would attempt to get me in as soon as possible.

At this point, I had not had anything to eat. Nicole and I decided to go to the cafeteria at IMC, which is where Dr. Noyes has his office. I was about half way through my hamburger and fries when Chris called me. Chris said he was calling to confirm that the MRI was scheduled. Chris then said that Radiology informed him that I had to be fasting for the MRI. I told Chris ok I would just have to stop eating my lunch.

We then went over and were able to see Dr. Noyes. One thing that I have learned, and that Nicole is a PROFESSIONAL with, is bringing a simple trip to the doctor's office. I have learned this really makes a difference when they go out of there way to make allowances for you. We took them Kettle Corn and Chocolate-covered Pretzels. ( I have also learned that you can never go wrong with chocolate when it comes to nurses.)

We then headed back to Huntsman. Chris had said that it would be a good idea to be there 20-30 minutes early so we could get paperwork done and get in there a quick as possible. We arrived about 30 minutes early, filled out paperwork, and they got us right in. I did find that the liver MRI was one of the toughest scans I have done. You have to hold your breath for nearly every scan. Though it is only a few seconds each time, it doesn't allow you to relax. I was able to breath normally through one of the scans. I was tired and fell asleep for a few seconds. I learned that made the scan take longer.

We got through the scan and arrived at the infusion center right at 3 pm. They were expecting me and checked me in. Chris came running in and told them to wait until the scan was read. Chris said he would call the "Reading Room" and get them to read the scan as soon as possible. We were waiting and waiting. Lori, the nurse in the Infusion Center, came out at one point and told me that I could wait out in the waiting room or back in the infusion room. I decided, because I was working on a puzzle, that I would wait in the waiting area. Chris finally came back and said everything was fine and we could start the infusion.

Lori then came out and said it would take some time to get the medicine mixed and then it would be ready for infusion. This was the first time I heard the infusion called chemotherapy. I noticed, once in the infusion center, that the IV bag also said chemo. I realized this was serious but also realized that it was different from chemo, especially the side effects!!!

Lori explained the procedure. Lori said the infusion would take 90 minutes. Lori started the infusion and then went and printed some information about the medicine. It is called Ipilimumab. Ipilimumab (also known as MDX-010 or MDX-101) is a human monoclonal antibody intended to be used as a drug to activate the immune system. Ipilimumab is undergoing clinical trials for the treatment of melanoma. Ipilimumab results in a one-year survival rate of 47% to 51% for people with stage III or IV melanoma, which is almost double the average. Unlike chemotherapy, in which side effects become evident soon after beginning treatment, the side effects associated with ipilimumab can vary greatly, presumably because the human immune system varies from person to person. The most common side effects of ipilimumab occur in the gastrointestinal tract (such as diarrhea and inflammation of the colon) and the skin (such as rash and inflammation of the skin). Less frequently occurring side effects include hepatitis, inflammation of the pituitary gland (hypophysitis), eye inflammation (uveitis), and kidney problems (nephritis). Side effects occur in up to 84% of patients but are generally mild and treatable. Julie, the Nurse Practioner, said that if we did get the drug, we probably would not experience side effects, if any, about 2 weeks from the infusion.

Lori told us that the infusion would take 90 minutes and then they would monitor my vital signs for an hour after the infusion. The infusion started about 5 pm and we finally left Huntsman about 7:30 pm. 12 hours at Huntsman!!! I love the place but that was a little long!!!

I still had not eaten. Nicole and I went to Red Robin, which was very near Huntsman, and I finally was able to eat. We got home about 9 pm. Luckily my daughters, Mariah and Allyson, were great and took care of the younger girls. Those two have been very good through this entire experience.

I did feel a little sore before going to bed. I woke up with a sore throat and a running nose. I think that is most likely from this freakish Utah weather!!!

My loving wife, Nicole, bought me a book that I could read at Huntsman. I asked her to get me Chad Lewis's book "Surround Yourself with Greatness." I read several chapters while at Huntsman. It is a very good book. Nicole went to high school with Chad. This morning, the day after the infusion, Chad was speaking at a morningside for the Orem High Seminary at our Stake Center. Nicole, who was as tired as myself, woke up early and went to the morningside. Nicole spoke with Chad and had him sign my book. What an awesome wife!!! To top it off, she called me as I was dropping off the girls at school and told me to stop by the church and say "hi" to Chad. I was able to get there in time and say "hi" to Chad. I met Chad once before at Nicole's 20 year high school reunion. Chad was awesome and it was great to speak to him for a few minutes.

All in all, it is nice to get started and feel like I am doing something to prevent the disease from coming back or to catch it early if it comes back!!!

It's been confirmed - Stage 3 - Clinical Trial to Start

2010-03-29T22:24:00.000-06:00

I received a phone call today from Chris who is in charge of the clinical trial. It was a very funny phone call. Chris was all excited. Chris said, "I have some really good news for you today. The pathologist report came back and it was confirmed the melanoma was in the lymph node, so its stage 3 and you qualify for the clinical trial." I said, "That's good news....for you!" Chris stopped for a minute and studdered. Chris said, "I didn't mean it that way." I laughed and told him that I was just giving him a hard time. We both laughed!!!

Chris told me that there was a mistake made when they drew blood and they did not get all the blood for tests that they needed. Chris told me that I was suppose to get the blood draws done on Friday when I was there for my CT scan. Chris told me for some reason it was not done. Chris said in order for me to start the trial on Wednesday, I needed to get those blood draws done. I am headed up in the morning to get those done.

When I told Nicole about the blood draws, she told me it might have been her fault. No one told Nicole and I about the blood draws so on Friday, while I was getting the CT test, Nicole talked to the nurse about a UA that I knew I was suppose to have done. Nicole said the nurse said there were blood tests and the UA on the order. Nicole told the nurse that we did the blood tests and only needed to do the UA. The nurse cancelled the blood tests. It's ok, just means I have to make one extra trip to Huntsman. I think I will survive!!!

Chris did tell me that all the MRI's and CT tests have come back clear of any signs of cancer. I guess Chris did have really good news, just not what HE thought was the good news!!!

I did have a great time going back to a hobby I love. I umpired a high school game today. It was really nice to get back outside and do something that I really enjoy, besides golfing!!! Luckily for me, the game got out of hand early (the score got out of hand) so I did not have to run alot or make any really tough calls. It is nice to break back into it a little slowly. It will be interesting to see what happens on Wednesday as far as how effects the way I feel. Hopefully it will not "slow down" my ability to do the things I love!!!

Back for scans in preparation for clinical trial

2010-03-22T18:34:00.000-06:00

So on Friday I will go back to Huntsman and have another MRI scan in preparation for the clinical trial. The clinical trial will start, if everything gets approved, on the following Wednesday. It will be nice to start treatment, even if it is the placebo.

My face is healing pretty well. I went back to the doctor because I had two lumps in my cheek. The one lump was full of fluid and the other was full of blood. They are going to test the blood just to make sure.

To catch everyone up!!!

2010-03-18T19:22:00.001-06:00

In 2003, I found a mole just above my hairline above my right eye. It was removed and found to be melanoma. I went to a surgical oncologist, Dr. Dirk Noyes, and had skin and tissue removed from the site as well as a sentinel node biopsy. Three lymph nodes were removed. Two from below my right ear and one near my right clavicle. The test from those returned clear of cancer. It was determined at that time that I would not have any additional treatment and would simply be monitored and observed. I found a dermatologist, Dr. Ray Peterson, who I would see on a regular basis. In those visits, my skin would be checked for any "suspicious" moles.

In 2007, during my check-up, my wife asked Dr. Peterson to removed a "spot" from my nose. Though Dr. Peterson thought it was nothing, it was found to be squamous cell carcinoma. A "Mohs" procedure was done and no other treatment.

In January 2010, I found a small lump under my right ear in the same location where the lymph nodes were removed. The lump was the size of about a pea. A week later, an MRI showed the lump was now the size of a peanut m&m (my favorite m&m's by the way). The lump was sitting on top of the parotid gland. Three days later, when the lump was removed, it was the size of a cinnamon bear. The lump was screened and found to be melanoma. I was referred again to Dr. Noyes. Dr. Noyes took out the parotid gland, 15 lymph nodes, skin, and tissue from the right side of my face and neck. After screening, again it was found I had no other signs of cancer. The screening included a PET/CT scan which also found no other signs of cancer cells.

Dr. Noyes referred me to Dr. Grossman at the Huntsman Cancer Institute for treatment options. I had been told early on in the process that I may have to start chemotherapy. My wife and I studied, read, research, and asked about Interferon. Dr. Grossman talked to us about our options. They included Interferon, a clinical trial of a new medication, or doing what we did last time and just monitoring my body and skin.

Dr. Grossman told me his job was to keep me from getting melanoma again and saving my life. I was grateful for that statement.

My wife and I learned that Interferon is the only FDA approved chemotherapy treatment for melanoma. It consists of a year's worth of treatment. The first month I would receive infusions 5 days a week for a month. After the first month, I would get injections three times a week for 11 months. We learned that Interferon is very toxic to the body and has very serious side effects. Prior to talking to Dr. Grossman, my wife and I were not convinced chemotherapy was our best option. Dr. Grossman talked to us about the process. While speak to us, Dr. Grossman said, "If I thought chemotherapy would save your life, I would tell you to start today! But I can't tell you that today."

Dr. Grossman told me that observation was a very real treatment option. I told him I agreed. I told him that it had worked the first time. I told Dr. Grossman that I was not under the belief that I was never going to get melanoma again. In fact, I told Dr. Grossman I believed it would come back. I told Dr. Grossman that I had learned that early detection was the number one factor for having the best outcome. I asked Dr. Grossman what I should be doing to assist in early detection. I told Dr. Grossman that simply "looking" for new moles was not the answer. Dr. Grossman agreed and said that I would need to do scans every three months along with some blood work.

Dr. Grossman then told me about the clinical trial I most likely qualified to participate in. Though the trial was a double blind trial, I was confident that it was a very good option. If I qualify for the trial, the scans and blood work would be part of the trial. If I did not, then Dr. Grossman would make sure those were done. The thing I liked the best was that Dr. Grossman told me that it would be my decision and he would support me whatever I decided to do, be it chemo, the trial, or observation. Dr. Grossman said the one thing we had not done was to make sure there was no cancer in my brain. Dr. Grossman ordered a brain MRI and some blood work. I am awaiting the results of the MRI and whether I qualify for the trial. The only question on the trial is about what stage melanoma I have. In 2003, I was told I had stage 3 melanoma. In this round, the melanoma was not a mole. The pathologist said the tumor was not in the lymph system. Dr. Noyes believes the tumor had to be in a lymph node. If the tumor was in the node, then I have stage 3 melanoma again. The trial requires stage 3 melanoma. I am awaiting another pathogist decision.

Though the recent surgery turned out not to be as "radical" as I first thought, it has caused some paralysis on the right side of my face. My right eye doesn't blink or close normally (though it is getting better) and the right side of my mouth and face don't work correctly. It makes it tough to eat and drink. I am learning to adjust!!!

I really was impressed by Huntsman Cancer Institute. I was impressed from the moment I walked through the door. It was obvious to me that everyone who works there is geared to taking very good care of people affected by cancer. They are very aware that everyone that walks through the door is affected by cancer, either because they have it or the person they are with has it. It can be a very depressing place as well. I learned quickly that at this time, I am pretty healthy compared to others that I saw there. I saw some very sick people!!!!

One thing that is different for me is that I never considered myself a cancer "survivor". People would say that to me after my first bout and I felt very uncomfortable about that "label". I believe it was because all I had was surgery. I did not experience what others who had battled cancer had experienced. Though I have only had surgery at this point, I do feel differently this time. I am very aware now that I am in a "battle" for my life and in a "battle" against cancer!!!!