Monday, July 28, 2014

Still Clear and Loving Life!

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 letting it limit what I want to do.  I still umpire baseball, travel, enjoy working outdoors, etc.  I am cautious but not reckless.

To those fighting the fight, I wish you the best and a lot of luck!!  I have realized that cancer is simply a disease that affects the limitations of the human body but does not limit the spirit that lives inside me!!  I can determine how I will react and live my life and I choose not to let cancer control it!!

Tuesday, May 28, 2013

Finished the Clinical Trial!!

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 and have been able to continue umpiring high school baseball!! This year I again was able to work a lot of tournament games including the 3A State Championship game where I worked behind the plate on the final game!!!

Life is a blessing and trials simply make you stronger!!!  I am blessed and again thank all of you for your support!!!

Monday, March 12, 2012

Quick note

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. 

Sunday, November 6, 2011

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

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!

Sunday, July 24, 2011

Wow I Hurt! Some of the Side Effects!

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!

Sunday, June 12, 2011

This treatment I felt like a pin cushion!

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!

Sunday, May 22, 2011

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

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.