Stress Test Success

(I had to change the name of this post to something besides, "He Passed with Flying Colors." Bret, Mark's business partner, told me that he about had a heart attack when he saw the first two words of the title! 😁)

This morning Mark had two stress tests -- one for his heart and one for his lungs. As he looked around the room at the others going through the same procedures, most much older, he felt quite confident. A few hours later, it was confirmed that he had passed.

Ian, who is working with Dr. Taylor for the Interleukin 2 protocol, emailed that the doctor had seen the results and we have a green light to proceed. Mark was rereading Ian's initial email before setting up the stress tests, "I've placed orders for you to have an exercise treadmill test and a lung function test. These tests are designed to stress out your cardiovascular system BEFORE we give you IL2 because the drug most certainly will." Oh boy!!

Next Wednesday morning, the 13th, Ian will go through all the details of what to expect. He also indicated, "there is an extra week in there between cycles 1 and 2. This has to do with Covid and managing available bed space throughout the hospital. In non-Covid times it's not uncommon for patients to have three weeks between cycles. I can assure you there is no clinical consequence related to this additional week. The additional week of recovery may actually benefit you, although in reviewing your stress test, I'll say I'm quite impressed with your stamina. I didn't last nine minutes during my stress test!"

In reading through the last post, we realized that it sounded much more positive than we initially felt. It was like a punch in the gut when we got the news. My chest was so tight that I felt like I could hardly breathe. It took some time to wrap our heads around it. Recently, I have noticed that my eye twitches often. I assume it's an indication that my body is a bit more stressed than I realized, although, for the most part, we are calm.

After hearing the news, I commented to Mark that we should spend the next few weeks watching movies and eating our favorite ice cream! A few days later, a package showed up on our front porch--6 pints of Graeter's ice cream, including my favorite, Double Chocolate Chip! We've been too busy to watch any movies, maybe next week! Mark has been occupied this week with preparations for Stake Conference, which is this coming weekend.

These challenges cause us to feel more deeply the pain that others are going through--like the young man we know who is experiencing very painful effects of cancer, and his family who feel helpless and want so desperately to take away his pain, and the cancer! Our hearts hurt for them and many others who are experiencing heart-wrenching trials. 

The day after Christmas, my sister-in-law had a brain bleed that the doctors found was caused by lung cancer that had metastasized to the brain and liver. (She never smoked a day in her life.) The prognosis was not good, but they thought she had weeks or even months to live. She went home on New Year's Eve, and on New Year's Day, she passed away peacefully surrounded by her children and grandchildren. She was so dear to all she had so diligently served, and she will be missed terribly,  especially by her family. The consolation is that my brother who died of Parkinson's 17 1/2 years ago,  is thrilled to be with her again!

The anguish of losing those dear to us indicates the love we have for them, so we mourn, as we should. I don't want to think of what it would be like to live without the love of my life, but it does cause me to feel empathy for those who are currently dealing with loss. Nevertheless, it is part of this life experience, so we mourn with those that mourn. But, we can also rejoice with those that rejoice!

On a bright note, the Graeter's ice cream is incredible!!! But, what we had to go through to get it!😅

Off to the Races (Treatments) Again

Mark had another PET scan this past Monday and learned the results on Wednesday at his appointment with Dr. Taylor. With Covid precautions, I can’t go to the appointments, so Mark patched me in via phone. He could tell from the doctor’s countenance that something was amiss. Dr. Taylor pulled up the images manifesting a golf-sized tumor in Mark’s liver. There was only one, but it indicates that the cancer has found a pathway around the medications, and other tumors will likely start growing. We have known all along that the current therapy is only a stall, so it was just a matter of time. Fortunately, this round provided 10 months with an excellent quality of life. Tafinlar and Mekinist were started on the 21st of February 2020. Despite all the craziness with a pandemic, natural disasters, and political unrest, we have had a wonderful year. Covid-19 allowed us to have more time together at home, and every day was a blessing! 

Dr. Taylor went over several treatment options:

1. Remove the tumor in the liver. The liver grows back quickly, so that wouldn’t be a problem, but the surgery is not easy, and other tumors will likely start growing soon. Why go through the surgery if it's not going to make a difference?

2. Radiate the tumor. The same problem exists-- the problem is likely more systemic, which would require therapy for the entire body.

3. Go back to Keytruda. It worked well before with minor side effects, but a tumor grew several months after the round of infusions, so it is not durable, but could be used again for a stall.

4. Clinical Trials – None currently have proven positive outcomes.

5. Interleukin 2. This therapy has been around for over 20 years. We have not used it because it is so hard on the body, but it does have a chance of complete response. The window of opportunity of using this treatment is closing, as Mark needs to be in good general health. It is typically not used in patients over age 65 or 70. Mark will soon be 69. Interleukin 2 involves one week in the hospital with daily infusions. Multiple side effects must be monitored. Two weeks at home and another week of infusions in the hospital. If scans reveal shrinkage or at least no growth, he can go to round two, which would be the same procedure. Three rounds are the maximum dosage, as long as there are positive results, and he can handle the side effects.

Our current best option is Interleukin-2. The snag is that Mark must pass the stress tests. His lungs seem to be in good shape, but he continues to have irregular heartbeats. If his heart is not strong enough, that will nix the deal. The stress tests will be scheduled soon. He will stop the current medications about a week before the tests. Dr. Taylor believes he has a better chance of passing the tests if he is off the current medications. They could be affecting his heart.

About 25% of patients receiving IL-2 have a positive response, meaning that the tumor either stops growing or shrinks. Somewhere between 5-8% have a durable response, a prolonged response beyond what is ordinarily seen with treatment, perhaps extending life for a year or so. A complete response can only be determined if the patient has no evidence of cancer for an extended period of time and lives years beyond what is expected. When Mark was first diagnosed with cancer almost 9 years ago, he had about a 3% chance of survival, so we’re okay with small percentages!

While it is always hard to get negative news, we knew it would eventually come. Now, we will get on with the next treatment hoping that it gives us more time together. If Mark passes the stress tests, he will begin the first set of infusions on January 18, 2021. The typical hospital stay is 6 days (and I can stay with him – YEA!)

Our ultimate hope is in our Savior. Recently, President Nelson said, "The question for each of us ... is the same. Are you willing to let God prevail in your life? Are you willing to have your will swallowed up in His?'

Recently, we came across a poem that was helpful to us years ago when we lost a business, resulting in severe financial challenges: (There are various renditions, but this is one we first heard.)

My life is but a weaving, between my God and me.
I let Him choose the colors. He worketh steadily.
Ofttimes He worketh sorrow, and I within my heart.
Forget He sees the pattern, while I see only part.

The dark threads are as needful in the weaver’s skillful hand
As the threads of gold and silver in the pattern, He had planned.
Not till the loom is silent, and the shuttles cease to fly,
Shall God unroll the canvas and explain the reasons why.

Elder Neal A. Maxwell said, “Now, as you and I look at our lives . . . , we sometimes do not understand that through which we are passing, but, being submissive, we can trust Him.
“The day will come when the tapestry of your life will be unfolded, and you will see divine design all through it, and praise God for the experience and the tutoring which, in His goodness, He has given you” (“Willing to Submit.” [address given at BYU—Hawaii devotional, 9 Feb. 1988], 8).

That said, it is NOT easy to go through these challenges. Tears and heartache are real. Talking about it now, when Mark feels great, is vastly different than when he is weak and sick. During those times, we will lean on the kind, loving support of family and friends. The love of others and the peace that comes from our Savior bring sweetness in the midst of pain.

Also, we recently have had some special feelings that give us much hope. They have led us to "fear not" but to have faith. We are truly grateful for your faith, hope, and prayers.

The Meds Keep Working

Another PET scan this past Monday, August 17th, has once again revealed no tumor growth! How thankful we are!! Mark is beginning to have some side effects from the cancer medications. Joint pain seems to be the most persistent issue. Dr. Taylor acknowledged that this is common. If the pain gets too severe, the dosage can be reduced, but it will remain the same for now.  

The Adrenal Insufficiency continues to be managed with Hydrocortisone. Some days Mark feels great.  Other days he experiences extreme fatigue, nausea, and dizziness.  For the most part, he can function normally if he gets enough rest. He is a trouper and does not like to complain. When he does, I know that he is definitely not feeling well.  

We continue writing stories of our lives.  It is sweet remembering the joys and sorrows, the trials and the triumphs, and above all, the many miracles and blessings that we have been recipients of. This summer, our outdoor project has been installing zip lines for the older grand-kids and anyone else who is brave enough to try them. (There is a 500-pound limit!)  Each zip-line requires a take-off and a landing, so several platforms and towers have been erected. Building has always been play for Mark, which gives him a chance to do something that he really enjoys.  

As much as possible, we spend time with our children, their spouses, and 18 grandchildren. They bring the greatest joy. Life is good! 

Great PET

Mark had a PET scan done on the 18th of May.  Dr. Taylor texted later that day, indicating that there were no active tumors.  When Mark went to see him on the 20th, he saw the scan.  The mass that has always been in the adrenal gland area is smaller than on the previous scan, which is great news!  This has always been the problem area -- whenever tumors grow, this one grows and is the one that has caused so much pain.  Currently, it is NOT active, although there is still a mass present.  Mark will continue taking Mekinist and Taflinlar for as long as they work.  He will no longer go off of these medications.  So far, side effects have been minor.

His biggest challenge now is just figuring out how much Hydrocortisone to take daily. If he doesn't get enough, he gets dizzy, nauseous, and super fatigued.  Of course, there are side effects if he takes too much, but he is figuring it out, and life continues on as a new normal.  We are enjoying the time we have at home together, so we are not bothered much by the Corona-virus.  Our children and grandchildren bring us so much joy, and we are so grateful that they are close by!