My Life's Journey with Melanoma

As many who have had a bout with melanoma know, it is not something that is "cured".  As I have experienced with my 2 bouts is that is can come back at any time and without any warning.  One of my big reasons for doing the clinical trial was because I wanted the best chance to catch the "next" melanoma as soon as possible.  As part of the clinical trial, I have regular visits with my doctor and regular scans.  Though I have had a few scares, luckily I have had clear scans now for 4+ years.  As the doctor at Huntsman told me, I am currently the patient who has been in the trial the longest at Huntsman.  It is to the point now that I it has been recommended that I return to seeing a dermatologist and my visits to Huntsman will not be as frequent. Though the news is great I still have in the back of my mind the question of when the "next one" will surface. Because I have decided not to worry about what I can't control, I am moving on cautiously but not ...

So it is done!  I finished the clinical trial this month!!!  It has been three years and now it is complete!!  My scans were clear!!  Dr Grossman even said that he was surprised how clear my scans were and how well I have been doing!!!  We did talk about the future.  I will go back and see him in 3 months and get scans again in 6 months.  I will see him every 3 months for 2 years but will only get scans every 6 months. We talked about risk of re occurrence.  I take this for what it is, statistical, because of going 7 years before re occurring.  Statistically speaking, things look very good for me!!!  What  I do know is that melanoma is a monster and can come back at any time and disrupt life!!!  The good thing is I know now some of the things that create a greater risk than others and can mitigate those risks as much as possible. The good thing is that this bout has not slowed me down.  I play basketball twice a week a...

Been a little crazy but all is well on the cancer front.  Treatments have gone well and as normal, strange things pop up each time. This last visit, I told the doctor I was having some fuzziness with my peripheral vision.  That bit of news generated an MRI.  One of the side effects of the drug is that it can cause there pituitary gland to swell.  If this happens, it puts pressure on there optic nerve and causes issues with vision.  Luckily, the pituitary gland was OK.  One bonus of three last treatment was I did not have to get benadryl.  The doctor did not order it so I caught a break. The great thing is I have been able to stay active, working, and doing the things I love.  My family has been very supportive and has taken very good care of me. 

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...

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 ha...

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 ...

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...

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!

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,...

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 ...

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 con...

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 somet...

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  train...

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...

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 w...

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 n...

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 at...

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 nurs...

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 a...

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 bega...