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Joel’s Story

IF YOU ARE NEW TO THIS WEBSITE, PLEASE SEE THE TIMELINE HERE IN "MY STORY" FOR A QUICK SUMMARY.



Check out our pictures in the Photo section and be sure to read the captions!

Also, please read the JOURNAL for recent activity, and sign the Guestbook! Joel LOVES to read them.


08-04-09 Surgery to remove initial lump on right side of Joel's neck.


08-06-09 Diagnosed with melanoma cancer INSIDE the body in a lymph node, stage 2 cancer.


08-27-09  Had a “Modified Radical Neck Dissection” where they removed 30 more lymph nodes. No cancer found in any of them. Joel was placed on Short Term Disability, began paying COBRA payments for family health coverage. Converted life ins policies to private, began paying for them.

Sept. 2009 Had a port surgically implanted in chest.


Sept. 2009 Began Interferon, an aggressive treatment that caused horrific illness. It was given via the port for about 2 hours every day, Mon-Fri, for 4 weeks. Then Joel had to go to the hospital 3 days/week for another 11 months to get Interferon shots (lesser dosage). He remained very, very ill the entire time (5 months or so).  They thought he was going to die.  We did too.



09-30-09 Joel was terminated “involuntarily but in good standing” from his employment of 7 years.


Oct/Nov 2009 Port was surgically removed.

Nov. 2009 Joel was changed from Short Term Disability to Long Term Disability.

Jan 2010 COBRA ins coverage increased from $235/mth to $900/mth for a family!!

02-01-10  Joel is place on Social Security Disability Income.  How sad, how humbling.

02-09-10 Joel’s PET Scan showed the cancer had spread to 3 places in his brain! What a shock! He was told he could not drive because he was now susceptible to seizures.  Joel is now "stage 4, terminal" and we are horrified.

Feb/March 2010 Joel had “Full Brain Radiaion” for about three weeks (14 treatmnts) in Fort Wayne.  He began taking steriods & started quickly gaining weight. He became incredibly ill with spells, vomiting, headaches, fever, chills, and more. Radiology nurses & doctors could not tell us why.

March 2010  Kimberly called the Mayo Clinic in Rochester, MN. They made appointments to see Joel one week later to see if they could help.

03-28-10  Drove to Rochester, MN, ten hour drive one way. Joel had seizures off and on the entire drive. Driving through Chicago was  terrible.

03-30-10  Joel missed his appts at the Mayo Clinic because he became so ill, while standing IN LINE for first appointment, he had to be rushed to the ER!!  He was admitted to St. Mary’s Hospital (a Mayo hospital) on a Tuesday. They began many tests over the next few days.

04-01-10 Dr. Lachance, a neurology-oncologist, came into Joel’s room around 5 pm on Thursday and advised that 2 of the 3 tumors could be surgically removed. AND that they had an opening the very next morning at 6:30 am! They would cut Joel’s skull in 2 places and surgically remove the 2 larger tumors. After praying, Joel decided to go ahead with the surgery the next morning…which happened to be Good Friday of Easter weekend!

04-02-10 Joel was gone from about 6:30 am to 4 or 5 pm in surgery and recovery. We saw him for about an hour afterward but he didn’t really know who we were. He was in ICU for 24 hours.

04-03-10  Jadyn and I spent most of the day with Joel.  He was in ICU until the afternoon, then moved to a room on the neuro floor. Not a great day.  Joel has never been able to remember any of today (or yesterday).  That's probably a good thing.

04-04-10 Easter Sunday, Jadyn and I found a church and went, then spent the remainder of the day with Joel in the hospital. We had no family for friends with us, we were 3 states away from home. Joel was not himself, which is understandable.  He just had his skull and brain cut into.  Not a good day.  Joel doesn't really remember this day either.

04-05-10 Monday - Joel released from hospital only three days after brain surgery...into the care of Kimberly.  VERY frightening for all involved.

Apr 2010 Stayed in MN for several weeks. Joel had many appts over the next week w/various Mayo doctors for follow-up after the brain surgery.

Apr 2010 A couple weeks after surgery Joel had gamma-knife radiation on the third tumor in his brain. He was released to drive home the next day. Joel could not drive until he was seizure free for 6 months, so Kimberly did all the driving.

May/June Various appts with oncologist in Ft. Wayne.

June 2010 Our friend Jim-nasium drove us to Mayo Clinic again for tests & an 8 week follow-up. All looked good inside Joel’s brain. Cancer had not spread.  PTL!

June/July Various appts with oncologist in Ft. Wayne. 

Aug 2010 Drive to Mayo again for 8 wk follow-up & tests. Cancer spread to brain. Did nothing at this time, but we are to return to Mayo again in eight weeks for follow-up.

Aug/Sept Various appts. w/oncologist in Ft. Wayne.

Oct 2010  Drive to Mayo again for tests and follow-up. Cancer in brain grew, so they performed gamma-knife radiation on it.  To return in 12 weeks.

Jan 2011  Jim-nasium drove us to Mayo again for follow-up.  Minnesota had SO MUCH snow we couldn't believe it!  Sadly, Joel's cancer spread to 8-10 places in body.  Sent us home to continue usual treatments.  To return to Mayo in eight weeks to see if treatments were helping.

Jan/Feb 2011  Various appts. w/oncologist in Ft. Wayne.

Mar/Apr 2011  To Mayo again for tests & follow-up. Cancer spread 12-15 additional places in Joel's body. Makes a total of approx. 25 tumors so far. Some large, some small.  Some we could see sticking up out of Joel' skin on his neck.  A 5th tumor was found in brain, gamma-knife done again.

Mayo Clinic told us of a drug (Yervoy) not available yet in the USA that was specifically for Joel's cancer.  We began working on seeing if we could get it in our hometown.


04-27-11 Indianas NewsCenter did story on Joel and the new drug Yervoy.
Joel was first in Indiana, and among first in USA to use Yervoy treatment.


4-28-11 Joel was the first in Fort Wayne to receive Yervoy.  Today was first treatment.  News reporters went with us.  Overwhelming, yet exciting.  Watch our news stories at  www.indianasnewscenter.org">www.indianasnewscenter.org">www.indianasnewscenter.org and just type in Joel Saunders in their search engine.


07-03-11 Joel hospitalized for EIGHT days due to terrible side effects from Yervoy. He was horribly ill.
Even though Yervoy had nasty side effects, it was supposed to shrink the larger tumors and possibly make some of the smaller tumors go away.  We could only hope and pray for the best.



08-04-11 Joel had a full-body PET scan. He was miraculously declared cancer free!! The cancer throughout his body was gone! Joel was in remission for now. The doctors DID NOT expect the Yervoy to do this. Check out the very first date in this "My Story" section, it was 08-04-09.  Today is 08-04-11.  We found out Joel was cancer free exactly two years to the date from his first surgery!! We give God ALL the glory for ALL good things!

Aug 2011 - Aug 2013 Over past two years, Joel had many problems such as memory loss, balance issues, speech issues, motor skill problems, shaking voice, depression, a few seizures, and so much more. Regular visits to oncologist, neurologist, and to primary care physician during this time for medications, PET scans, and MRIs on his brain.

Even though cancer free, Joel is still considered stage 4 terminal and will never return to work.  They expect the cancer to return, become even more aggressive, and take his life at an early stage.  And what do we do?  We praise God during both the good times AND the bad times!

Spring 2013  Social Security Disability people decided that because Joel has no active cancer in his body, that he can go back to work!  Crazy people!

Summer 2013  Had to hire attorney to represent us against Soc Sec Admin.  Things look bleak.  So we are going to Mayo again to get Joel specifically looked at.  Hopefully, those reports will show Soc Sec Admin that Joel is disabled from his treatments, and surgeries, radiation, etc. 



08-05-13 Spent another week at the Mayo Clinic. Joel had many tests and has a great deal of problems due to the full brain radiation, interferon, yervoy, brain surgery, etc. Joel has been diagnosed with progressive dementia. 

Joel has brain atrophy (natural shrinking and shriveling of brain usually due to old age) and his brain is comparable to that of a 70 year old man. He is only 48 now.

He also has an adrenaline insufficiency and wears a medic alert bracelet. He still suffers from all of the previous problems.  But, we are grateful to the Lord that Joel is still with us, that's the most important thing of all!

Sept 2013  WE WON!!  Unheard of, but we won't against Soc Sec Admin.  It's because we are honest, and we have God on our side!!! 



12-20-13 We receive the results of Joel's full-body PET scan. Joel continues to be cancer free! It has now been two and a half years! The doctors are stumped! But WE know that God is SO Good and we give Him all the glory for Joel being in remission!

02-01-14  Joel had a seizure and we took him to the ER this morning.  They performed tests, kept him overnight.  Kinda scary because he hasn't had any serious "problems" in such a very long time.  PTL for that!

02-02-14  Superbowl Sunday - Joel is itching to get out of the hospital!!  After having an MRI on his brain, some more blood work, and seeing three doctors....they determine that the seizure was from a change in medication five days ago which lowered his thresh-hold again seizures.  He is being weaned off that medication and onto another. 

Praise God that Joel was released and we got to leave just in time to watch the Superbowl game in the comfort of our own home!  God is so good!

FUNNY SIDE NOTE:  We recently realized that Joel has been in the hospital on April Fool's Day, Good Friday, Easter Sunday, Father's Day, Fourth of July, Superbowl Sunday, and Groundhog Day! 

Website written by Kimberly K. Saunders


Latest Journal Update

DISTURBING NEWS

Jeremiah 29:11-13 says, “For I know the plans Ihave for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Then you will call on me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart….” 

DISTURBING NEWS  

I went for a routine eye exam last week and received some very unexpected and disturbing news.  Nothing life-threatening, but it certainly made me begin to think more clearly about my life and some changes that need to be made.  I’ve been doing a great deal of praying and reflecting.  

The scripture that I chose to share, Jeremiah 29:11-13 (see above) is one that many people call a favorite.  It came to me this morning as I lay in bed contemplating the future.  When I got up and began typing this journal entry.  I went to www.biblegateway.com to be sure that I had the wording exact.  Guess what their Verse of the Day is today??  Yep, it’s Jeremiah 29:11-13.  There are NO coincidences in life….the Lord was speaking to me through His Word.  How very comforting to know that He is here, with me now, soothing my fears! 

I am only 54 years old.  Most people tell me that I look younger, and I feel like I’m in my 30’s.  Having a child late in life keeps a person feeling and acting young, which is a very good thing, of course! And yet, at this recent appointment my optometrist advises me that I have cataracts!  I'm like...what???  Cataracts, no way!!  Now you may be thinking, “So what, that’s nothing, everybody gets them!” But keep in mind that most people get cataracts in their 70’s and 80’s.  

The doctor told me that it is possible for a person my age to get cataracts, but very uncommon.  And not only do I have cataracts, but there is something strange going on with the one in my right eye.  The doctor drew me a diagram and explained it this way. A cataract is like a foggy window.  It starts off very lightly fogged and over time that fog gets thicker and thicker and more dense until a person can no longer see out of that eye.  

My left eye is at the very early beginning stages. It’s slightly foggy.  My right eye is much more advanced and then there's that thing going on that the doctor isn’t sure about.  Along with the foggy glaze, there are thick, solid marks going in each direction (see picture).  As he sat there explaining all of this to me I felt like throwing up.  Inside my head I’m screaming, “But I’m too young for this!!!” My thoughts are all jumbled up and I'm not believing what he’s telling me at all.  Although, now that I've had some time to ponder this, I'm not nearly as upset as I was at first.  I have not researched online yet (about the right eye) because I'm nervous about what I'll find out.  I believe that I will hold off on researching for now.

I hadn’t noticed anything at all going on with my sight.  The doctor told me that it’s more noticeable at night, like when you look at lights and see a halo or ring, around streetlights.  So as I was driving the other night, I checked it out.  And yes, I could see a definite halo/ring thing using my right eye.  There was nothing hazy when I looked out of my left eye only, so I was thankful for that.  I still just can’t believe it!  Talk about making a person feel really old.  

Dr. Bonham said that we would “keep an eye” on how my cataracts progress.  I sort of wanted to laugh when he said that, but I didn’t want to seem disrespectful.  I may have to go see him, or a specialist, more frequently.  It all depends on how my eyes progress.  Over time the cataracts will continue to “ripen.”   For other young people, like myself, who don’t have much experience with cataract terminology…when a cataract ripens, that's when it’s ready to be surgically removed. Mine may not need removing for a couple of years, or the right eye may need something done within months.  Seriously??  Yikes, eye surgery totally grosses me out.  

My doctor did explain that “every single person gets cataracts.”  Everybody. Period.  He said that people will tell him their Grandma lived to be 95 and she never had them.  Dr. Bonham tells them “Yes, she did have them.  She either didn’t realize it, or wouldn’t admit her eyesight was that bad!” Everybody gets cataracts, but many people just do not realize what they are.  Some get them much later in life than others.  Some folks pass away before their cataracts become noticeable. 

I have to admit that I was so upset when I drove home.  I couldn’t even tell Joel right away.  Then when I did, he asked a couple of questions, walked out of the room, and has not brought up the subject again. Sigh. The poor guy has so many health issues of his own to deal with.  With me being Joel's caregiver, I don't have time for medical problems of my own.  I'm too busy dealing with things that he cannot take care of, but must be done (insurance, his FIVE different doctors and appointmenst, and on and on).  The truth is…I would love some comfort, some encouragement, or some reassurance that all will be well.  I feel like a child wishing that someone would simply hold me and whisper words of comfort to me.  But I can’t get any help when I’ve only told two people, now can I?  I don’t know what to say, plus I’m a little embarrassed.  So here I am, writing about this in my journal, telling hundreds of people at once. Honestly, I just want to cry out, “Won't somebody please tell me it’s going to be okay??”  

The important thing is, we all need to remember that the health of our eyes is very precious, and that our actual eye “sight” is priceless.  I work at the computer often.  I sit and make jewelry when time allows.  This is a time-consuming process using detailed and miniscule parts and pieces causing a great deal of eye strain.  Another favorite thing of mine is sewing.  Again, very eye straining.  And last, but definitely not least, I love love love to read and could do it for hours if I had the time.  Talk about putting a strain on our eyes!  Everybody's eyes need a great deal of rest from the many things we put them through. Yet it’s not something we think about that much. 

Does this mean I need to give up my very favorite things to do in my occasional spare time?  Life is already difficult and depressing enough as it is.  If I can’t do these things that I love and deeply enjoy, then I’d have no release from the every day stresses in my life.  Ugghhh!  I am SO nervous about this!   

So, am I over-reacting?  Maybe.  But that's okay.  My "plate" is full to over-flowing with Joel's medical needs, and this is just one more thing to add. So I'm thinkin' it's okay to over-react.  I am afraid of cataracts and afraid of eye surgery.  Anything to do with the eye really scares me.  To me, this is crazy and weird and frightening to have to deal with at any age. 

Then I sit here and think about Jeremiah 29:11-13.   I reflect on how the Lord brought this scripture to my mind as I lay in the dark this morning, crying and praying.  And it's amazing how Jesus met me with this same scripture when I sat down to type up this journal entry.  How sweet is that? He DOES have a plan for me.  So what if I have cataracts so early in life!  I’ll deal with it one day at a time…just like we do with all of Joel’s health issues.  That’s all I can do.  I know without a doubt the God of Peace is with me.  And of course I trust in Him.  And you know what?  HE is holding me, and comforting me, and encouraging me to trust in Him.  That's all I truly need!

I would covet your prayers.  I’m not asking for the Lord to remove the cataracts, not at all.  I would rather have prayers that I'd be able to more willingly accept God’s plan for my life.  I would also love prayers for the Lord to take away my fear.  I will also be praying for a stronger faith and to be able to clearly see the lessons that can be learned from this experience.  Thank you so very much.  

Serving Christ in love and joy,

Kimberly

Philippians 4:6 says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.

 

 

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Comments

3 Comments

Bob Farrer
By Bob Farrer
Rebecca had cataract surgery at your age. One of our sons at age 21 was told he had the start of one. Vision is so important, it IS a big deal. But then it is more common than we know. Certainly with all the medical issues, it isn't any fun to have another!
Mark McCoy
By
Be encouraged! I'm also in my 50s and have had at least 3 friends in our age group have cataract removal surgery over the past couple of years. It's done one eye at a time, of course - usually over a 2 week period in between procedures - which take very little time and are outpatient. You're home resting & recovering before you know it. :-)
Patty Rhodes
By Patty
Kimberly, you are so inspiring with your words and faith. Prayers will be said for you by both Rob and I. I will also be praying for my faith that I too could believe and understand God's plan for my life. You are such a wonderful wife, mom, sister, daughter etc... And a great friend. Love you and miss you.