I Am Thankful! - by Ane

As soon as I woke up this morning and realized that it was Thanksgiving Day there was no hesitation in counting my blessings.  Mark was sleeping peacefully next to me.  Not only is he alive, but he is as healthy and vibrant as he has been in a couple of years.  The cancer was likely growing for quite some time before we knew it was there.  As we look back we recognize the signs that at the time we thought were just the normal challenges of aging.  Now Mark has increased energy and sometimes I have trouble keeping up with him!  This is more than the miracle of modern medicine.  Yes, I will acknowledge that the medicine was miraculous in shrinking the tumors so quickly. We knew that if it worked it would give us more time together, but even with the meds it wasn't likely that he would live much more than a year from the time he was diagnosed.  Dr. Urba told us much later that Mark’s condition was so severe that he didn't think he would live more than 3 months if he did not respond to the meds.  The 6-12 month time frame he initially gave us was more than optimistic, perhaps more the time frame if he responded positively to the Zelboraf.

Mark has been off all meds now since January and there is no indication of any tumor growth.  We meet with Dr. Urba again this coming January and will determine when to have the next scan.  Will the cancer return?  We don’t know.  What we do know it that we have been recipients of a miracle, and for that we are most grateful!  So today I am thankful – for Mark’s health, for more time together, for a loving supportive family, for the kindness of friends, and for the power of faith and prayer through which miracles are made possible.

3 Aug 2011

30 Jul 2013

10 Aug 2012

Healthy, Happy and Home Again - by Mark

Our visit with Dr. Urba, our oncologist, was pleasant and wonderfully uneventful.  All is still well!  He says I am looking good and with no unusual aches and pains, we should stay the course and ride it out drug free as long as we can.  If it comes back we would likely hit it with "Z" again and knock it back down.  He is very clear that we are in uncharted territory.  Zelboraf simply has not been around that long. There are so few that are still living, way fewer that are in remission and even less have gone off the medication.  We are so grateful to be here and to have more time together.  Thank you again for your love, faith and prayers.  It has been a miracle.

Ane and I had a wonderful time in Ireland last month, celebrating our 35th.  It was beautiful and exciting.  It rains all year there so everything is lush and green.  We did get to see many of the records of our ancestors in the Kilbrogen church in Bandon, County Cork.  It was exciting to find some that we didn't have complete information on.  Driving was the most exciting with very narrow roads, (literally 6" wider than our car, including the center stripe) with no shoulders and stone walls or hedge rows right next the driving lane.  To make it worse they are driving on the wrong side of the road at 50 miles an hour around blind curves usually on wet pavement.  If that is not enough, the pub is the center of life for many of the Irish and downing a pint of their famous Guinness dark beer is tradition.  It is no wonder American Express won't insure rental cars in Ireland! :)   Well...we made it through unscathed and had a delightful time.

Relay for Life - by Ane

Last Saturday night, the 13th of July, Mark shared his story at the Lake Oswego chapter of The American Cancer Society's Relay for Life.  He did a great job!!! Many were touched and we were asked if we truly understood what a miracle we had!  Yes, we do!!  Not a day goes by that we don't give thanks and rejoice in the blessings we have received. 

Our 35th is Today! - by Ane

Today Mark & I celebrate our 35^th wedding anniversary!  It has been a most joyful day – lunch with friends, an afternoon movie, and dinner at Paley’s Place in Portland.  At some point last year I had a feeling that Mark would be here to celebrate this anniversary and I wrote it in my journal.  When it was I didn’t remember, but I wanted to find it. I went to my journal, but where to look I did not know.   April 1, 2012 looked like a good place to start.  About half way down I saw these words that I had penned:

“This morning as I was awaking I was thinking about the extension I had prayed for.  There was a sweet feeling that we may be able to celebrate our 35^th wedding anniversary which would be a year from this July, and that we would go to Ireland.  That would be awesome!!!”

It is awesome!  Not only did we get today, but we also will be going on a Mediterranean cruise the end of July, and from there we will spend a week in Ireland.  Mark’s great, great, great grandparents, Edward & Francis Hornibrook were married at Christ Church Kilbrogen, Bandon, County Cork, Ireland.  We will visit the church which is now a museum as well as the adjoining cemetery where their parents were buried.  Edward & Francis immigrated to Canada in 1826.  Going to County Cork has been a dream for many years, and this August it will become a reality. So many blessings fill our lives, and our hearts are full to the brim with gratitude. 

Oh Happy Day! - by Ane

Another clean chest x-ray!  Hurray!!  Mark has been off the Zelboraf for five months now, and there doesn’t appear to be any tumor activity.  He feels GREAT, his hair is growing back in thicker than it was before he lost it, he is gaining weight, and looking younger every day!  Wow, what a blessing.  What a miracle!  Dr. Urba used the word remission today and said unless there are any concerns he will see us in 3 months for a routine check-up.  During the last visit I had mentioned to him that there were MANY people praying for us, and he said emphatically, “Tell them not to stop!”  So, thank you, thank you, thank you!!!

Defying Odds? - by Mark

I’m still here and feeling great!!  We just got back from our Precoa cruise on the Allure of the Seas; what an amazing ship and what wonderful people.  Between family, friends, work and church I have never been told so many times how great it is to see me and how wonderful I look.  It is awesome – everyone should get such treatment, it does wonders for the soul!  I guess it is compared to death or the very ancient, pale, frail, gaunt look I had 6 months ago.  In any case, I feel much loved and am so grateful to be here feeling so good!

Ane and I met with Dr. Urba yesterday – what a wonderful man.  We discussed options and determined to do nothing until late June/early July.  At that time I will get another chest x-ray.  If there is nothing, I suspect we will just keep monitoring.  If there is something growing I will likely go back on Zelboraf. Recent studies in mice show that starting and stopping this medication does prolong the life of the four legged little creatures so it is assumed it will work the same in humans.  Dr. Urba is not encouraging Yervoy at this point because I am doing so well and my quality of life will not be the same on this treatment.  He even indicated that I could be the one that each oncologist seems to have that defy all the odds and are healed, when according to medicine they shouldn’t be.  We would be OK with that! 

I have had some heart palpitations over the past couple of months so Dr. Zemsky, the heart electrician, had me wear a heart monitor for a couple of days.  He just emailed and said: “Your Holter monitor showed some short episodes of arrhythmia, lasting seconds.  These are not concerning, and are likely what you're experiencing during palpitations.”  So… we don’t need to sweat it.  Just keep enjoying life.

With so many faith filled prayers heading our way – I just may be the one to defy the odds.  Thank you so much for your faith, prayers and healing thoughts!!  I feel great!

Still clean! - by Mark

The x-ray we took last Friday looks the same as before with no tumor growth, just some leftover tissue doing nothing. Hurrah! Still tumor free.

I asked Dr. Urba how long do patients usually go before the tumors start growing back?  He said, they don't know.  Usually, they don't go away. Of those that do there are not enough to draw any conclusions.  Those that have had them come back have been months but there are so few.  The drug is new; those who's tumors shrink to nothing is rare and the idea of stopping and then restarting is even newer, so we are on the very cutting edge of treatment and don't have a clue.

The side effects are slowly going away.  My hair is still very curly (kinky/frizzy) but actually lays down, a bit.  The joint pains are gradually going away and the skin growths are slowing down.  I am gaining weight again and food tastes great.  I am still on the nutritious diet and will be forever:-)  I actually quite like it now.

We will be on the company cruise in April and so look forward to being with our Precoa friends again.

It is all of your love, faith and prayers and the blessings of heaven that have extended my life.  Now every day is a bonus day, a day for loving, learning, sharing and serving and always another day of gratitude!!

Love forever,
Mark

Decisions, Decisions! - by Ane (& Mark)

The problem with going to the Oncologist is that it all becomes real again.  Mark is doing so well, it seems like the cancer is gone; we dogged that bullet and away we go with life.  But our Doc brings us back to reality and we have to make life or death decisions or ones that could have that kind of impact.

Yesterday was our 6 week check up with Dr. Urba.  Since Mark is doing so incredibly well the doctor doesn’t think that we need to hurry to start the Yervoy.  We might as well enjoy our time of Mark feeling so good! 

The protocol for Yervoy (ipilimumab) is a 90 minute outpatient intravenous injection every 3 weeks with a total of 4 injections.  We had thought that he would start the Yervoy in a few weeks, taking one or two doses before our company trip the end of April and the rest after, but we learned yesterday that the side effects can be very serious. We need to be close to good medical facilities during the duration of the treatment. 

We had lots of questions, i.e. “Does the drug work if there are no tumors? Is it better to wait until they start to grow?”  Dr. Urba told us that there are NO answers to these questions.  This is the ART of medicine because we are on the cutting edge.  There is no real science yet until more research is done - which is in progress.  He did indicate that side effects tend to be worse with less tumor activity which gives us another reason to postpone starting the drug.  Also, if there is some tumor activity it is possible to determine if the drug is working.  

Of course, we are anxious to know if any tumors are growing so Dr. Urba ordered a chest X-ray.  It’s the least invasive.  PET and CT scans cannot be done so often.  Mark can get the X-ray whenever we are ready.  Since it’s only been 5 weeks since the PET scan we feel inclined to wait at least a few weeks before we expose him to more radiation.  Also, we want to move it closer to the trip.  If tumors show up we will decide whether to start the drug right away or wait until right after the trip. It depends on their size and rate of growth.  If there are no tumors we will rejoice once again! 

So for now we are doing nothing medically, but we can enjoy every minute we have together, and we are doing just that!

The One-Year Mark - by Ane

One year ago yesterday Mark had the first x-ray of his chest followed by a CT scan along with a call from the doctor that he needed a needle biopsy as soon as possible.  
 

One year ago today we came to understand that these tumors were most likely metastatic melanoma.  The reality of the seriousness of his condition became more evident.  During the next ten days the diagnosis became increasingly bleak as we learned of tumors not only in his lungs, but also in his liver, heart, and other areas of his body.  

Yesterday Mark spoke in Stake Conference looking very healthy – less of him and less hair, but feeling great!  The closing song was “How Firm a Foundation” - our favorite, especially the 3^rd verse:

"Fear not, I am will thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand."

Tears flowed freely of gratitude, as well as hope for healing.  

Today we are sitting in a nice room on the coast watching the waves and enjoying a quiet day together.  I’ve reread the events of one year ago.  Did it all really happen?   Mark seems so healthy right now.  How blessed we are - he is here!!!  Miracles have happened.  Our hearts are brimming with gratitude for so many who have offered prayers in his behalf and who have been so supportive!  We have felt Father’s loving arms around us. There is no doubt that He hears and answers prayers.  This time the answer was what we wanted.  The extension was granted.  Last year we were able to enjoy two wonderful family vacations – one with just our children and another with children and grandchildren.  Mark and I went to Israel – a dream come true.  Rachel got married and she and her father shared that special father/daughter dance.  So many sweet experiences!

We don’t know what the future will bring, but we totally trust Him.  We pray for continued guidance in what we need to do to keep Mark here.  We will move forward with faith. 

PET scan report - by Ane

Monday or Tuesday we expected to hear results from the PET scan, but nothing. Dr. Urba has always gotten back to us right away, so we were feeling a bit concerned.  Today Mark e-mailed him and this was his reply,

 "I looked and there was no PET activity on the scan." 

Later he wrote,

"Scan essentially the same as before.  The CT scan shows minor abnormalities where tumor cells were before but there is no PET activity.  Dead tumor cells with scar tissue? Or tumor cells that are metabolically inactive (i.e. in hibernation) so no PET activity but might come back some day?  Not sure of which but all the options we discussed are still possible. Nothing going on in the heart by the scan.  All good."

Yippee!!!! 

Off the Z!!! - by Ane

Yesterday we met with Dr. Urba, our oncologist. From our last conversation with him we were aware that decision time was coming, so today we reviewed the options:

• Stay on Zelboraf for as long as it works – although from all the doctors have experienced the body always finds out a way around this drug so it’s just a matter of time.

• Go off Zelboraf for awhile which gives the body a break from the side effects, and then go back on for awhile – rotating on and off.  In a study with rats it appears that it works as well the 2^nd or 3^rd round, and perhaps keeps the body from figuring out a way around it as quickly, so hopefully it would buy more time.

• Go off Zelboraf until the tumors start growing again and then start another round of Z.

• Go off Zelboraf for a time and then use another drug – Yervoy (ipilimumab) or Interluken 2 - each has about a 5-6% chance of actual cure.  Yervoy is much less invasive, but hasn’t been out as long as Interluken 2, but so far results have been similar. 

Dr. Urba spoke to Dr. Paul B. Chapman, one of America’s leading experts on melanoma from Memorial Sloan-Kettering in New York, specifically about Mark’s situation.  He recommended going off the Zelboraf for a time and then using a round of Yervoy. 

The only problem with using this treatment when there are no tumors visible is that there is no way to know if it is actually being effective.  Regular monitoring would be required. If nothing comes back for years, then we’ll know it worked! :)

After some discussion we all agreed that it was best to stop the Zelboraf immediately.  This Friday Mark will have another PET scan to see if there are any indications of tumor activity anywhere in his body.  If there is he will start the Yervoy or Interluken 2 right away.  If not, we will wait until our next appointment in six weeks to decide what to do.  At this point we feel most inclined to go with Yervoy.  Why not listen to the expert!  Of course, we will seek heavenly direction, as well.  

We are a bit anxious, yet hopeful!