About

Our blog is a collection of medical updates, thoughts, a little humor as well my my spiritual journey as we take on the  most challenging adventure I have ever been on. My motivation  for creating this site is to inform and encourage.

We  generally update  once a week, or as  significant  news becomes available.   Be sure to subscribe to have   these updates  emailed to you 

Background

In October of 2017, doctors discovered that I have seven  (7) cancerous tumors in my brain and one in my lung. After a biopsy, we learned that I have melanoma, which metastasized from an unknown origin to my brain and lung, classifying it as “Stage 4.”

Statistics show that I have between 6 to 24 months to live. Although this sounds ominous, it is only a statistic,  and I know we are not statistics.

After much—and continuing— research, advise and prayer, Amber and I decided to take a holistic approach to treatment. Although there are no guarantees in anything we do, we believe this battle can be fought on many fronts and from many angles.  Most important being through prayer; through the the power of our God and Creator. Miracles do happen.

I have also decided to  radically change my diet, lifestyle and use natural medicines to compliment any conventional medication . As we monitor my progress, we may make adjustments taking advantage of holistic, as well as modern, cutting edge treatments.

 Since this site is open to everyone, I am especially encouraged —as well as many others—by your comments under each post. I read all of your messages and try to reply to every one, and if you have a personal message for me, you may email me direct at john@heyjt.com

We post here before anywhere else.

JT

JT’s Menagerie

Just the Facts

Yesterday, JT was transferred out of the step down room/ward, to the rehab ward.

JT’s LEFT peripheral vision is gradually coming back!! If straight ahead is 12 o’clock, he can see movement on the left side over to about 10 o’clock!! Prior to the surgery, he would not have been able to see this. He can now see his lap, which he couldn’t see previously. He still can’t see the lower left peripheral. His vision is different now, so JT asked me to point out that we are not comparing apples to apples.

John’s brain is scrambling the words he sees. He recognizes letters, but when sees a whole word, he says “it’s like looking at Russian”

JT has been having hallucinations. See below for details…

John had a good 30 minute physical therapy session today. He walked to the physical therapy room and then walked up and down a set of stairs with only minimal assistance.

Strength and Attitude

JT is such a hard worker. He never ceases to amaze me at how he just keeps smiling and pushing through the pain and frustrating circumstances. JT often repeats, “Life is so good.” And “We are so blessed.”

JT was asking God why he has to relearn how to read, and finally got to the place where he could say “Thank you!” Because he can see on the left side again! We feel this is our first miracle!!

From JT:
I want to give a shout out to my son, James. He stayed the night to give Amber a night of rest. Throughout the night, he was attentive to my every need.

Prayer Requests

Complete healing from cancer.
Complete restored vision.
That the upcoming immunotherapy will be more than a success. (Success will be life extension. We want cancer destruction.)

Levity

JT’s hallucinations are a source of entertainment. He saw a 3” beard on me two nights ago. And last night he saw a gecko on Mom’s face. In the middle of conversation, he will just exclaim, “Whoah! There goes a gazelle!” We aren’t sure if it’s a result of the surgery, or one of his meds. Here’s a list of the animals running loose through the hospital room at any given moment: Tiger, Lynx, Llama, Bear, Horse, Leopard, Caribou and Raccoon and dozens of others. He has seen the ghosts from Disneyland’s Haunted Mansion, hunched over waving and smiling. He also sees, on a regular occasion, our dog Andy sitting in the corner.

Love to you all!

JT and Amber

Steps Toward Progress

Just the Facts:

JT had a good, yet long day today. He started some initial physical therapy and did very well for his first session. He said it was “A lot more difficult” than he thought it would be. Taking twenty steps reminded JT of the last 1/4 mile backpacking out of the Grand Canyon, when you just don’t have the energy or strength to keep going.

Got insurance approval for immunotherapy.

Post-op MRI was completed. Initial feedback was positive. Will be able to ask neuro surgeon for more detail when we see him next.

JT’s vision improved, but his brain is relearning how to interpret what it sees. We started using flash cards to help him.

He will be in the hospital for probably five more days, depending on how well he responds to rehab.

With just a couple of our family members present, we were told it is still too much stimulation for JT. The doctor asked us to please limit JT’s visitation to one family member at a time so he can rest.

Strength and Attitude:

So far, JT has complete peace and no anxiety. He says he feels closer to God than he ever has before.

JT started praying for his neighbor in the room next door. We haven’t seen any family members come by. JT got choked up thinking about how fortunate he is to have a family that he is so close to that comes for a visit each day, and for friends and family near and far praying, and anticipating these updates because they care so much.

Prayer Requests:

Complete irradiation of cancer
Reatoration of eye sight

Levity:

JT is always trying to pump the nurses for info… about his neighbors… for recipes… about what they are doing after work… so far, he’s only gotten a couple of recipes.

I can hear the volunteer harpist playing right now as I write this from the chair in JT’s hospital room. Wow! What a treat.

Love,

JT and Amber

Tough Stuff

Amber giving the update.

When the doctors took the pre-op MRI, there was significant growth of the tumors from the MRI two weeks ago. The smaller tumors were now large and the largest tumor was taking up a majority of his Right Occipital lobe.

Seeing the growth of the tumors in just the last two weeks has really impressed the urgency of the situation. It looks very grim.

JT’s vision is still severely impaired, but has shown some improvement since yesterday.

The drainage tube was removed this afternoon, which is another step in the right direction.

JT is eating well and can feed himself with assistance.

He still has his sense of humor.

Waiting on the post op MRI.

I am frustrated with the insurance bureaucracy… waiting for approvals for inpatient rehab and immunotherapy, which was ordered on 02/06.

I totally snapped at my sweet sister today in the middle of our conversation and stormed out of the hospital room like a big baby.

Please keep praying for all of us. JT needs a miracle. We need strength and grace and to keep pulling together as a family and not let our nerves and emotions get the best of us. Pray for wisdom for the doctors to juggle immunotherapy and post-op rehab.

And pray that we remember that our help comes from the Lord.

Love you all,
JT and Amber

Surgery Update

Dr’s say the surgery went well. JT is in recovery now. Waiting for room in ICU. Still no visitors please.

Thank you thank you for all of your prayers! 💕

 

Surgery Day & Visitation Requests

During the surgery we  ask that only immediately family visit so we can focus on each other. When JT gets out, he will go directly into the ICU.

We will let you know once he/we are up for visitors.

Pre-op appointment at Huntington

John is in good spirits, he is tired and struggling physically, but knows how fortunate we are to have such support in all of you. We have met some cancer patients who didn’t have this… I keep saying this is a testament to the beauty of God’s design for the church. JT is praying that when we go in for surgery prep on Tuesday morning, the procedural scan shows no tumors! He also asked me to share something he heard Joni Eareckson Tada say, “God uses what He hates to accomplish what He loves.”

We have updated the calendar in our care community. I am anticipating that when we bring JT home from the hospital we will need a little more help. I don’t have words to express how wonderful the outpouring of love we’ve received is. Thank you all for your support, for reaching out and for your prayers. We are grateful for the meals, help around the house and errands. Even if you aren’t local, Here to Serve has ways for you to help. Join our Here to Serve Care Community if you want to help in this tangible way.

Surgery Scheduled

Just the facts:

  • We had an overwhelming response from all of you with connections at Arcadia or Huntington.
  • Surgery is scheduled for Tuesday, Feb 13 at 1 pm.
  • JT still having inability to walk or see clearly.

Please be praying Tuesday, Feb 13 from 1 pm – 7 pm.

Love,
Amber

Glimmer of Hope

Just the facts

  • JT lost his ability to walk on Sunday. He was physically carried to the car and from the car to the house. (Later, he danced to our song  during the superbowl halftime show.)
  • JT now walks into the walls and door jams. He bent down and cut his forehead on the counter in the bathroom. We got him a stabilization cane and have a wheelchair on order.
  • He cannot see nor recognize faces easily.
  • JT got lost walking around our own neighborhood.
  • We received a copy of the MRI report and ALL of the tumors have grown.
  • Learned that brain swelling is causing cognitive and motor problems, not the steroids.
  • Approved for brain surgeon consultation. Surgeon believes there is a 95% chance surgery can be successful. Possibility of restoring some eyesight and motor functions. Need to get into surgery as quickly as possible.
  • Consultation with Irvine cancer center, specializing in integrated treatment, involving the latest in oncology medicine concurrent with more natural treatments.
  • Met with Oncologist to start immunotherapy. Waiting for insurance approvals.

Prayer requests

  • Complete healing.
  • Full restoration of brain function and eyesight. Sounds impossible but can be done!
  • Operating room to open up quickly for brain surgery. Time is of the essence. Must be at Huntington or Arcadia Methodist. (If you have a connection, would appreciate a scheduling miracle)
  • Wisdom for which treatment to pursue (immuno or integrated).
  • Minimal side effects from treatments.

Strength and Attitude

Amber here. I typed most of this as JT dictated. But for this section, I wanted to share why we called this post a “glimmer of hope.” First of all, Saturday was an amazing day for me personally. I had a good morning of prayer and then listening to the message on XM radio I heard the song, Thy Will Be Done. When the bridge came on about how God sees me (and us) and only has the best plans for me (us), I was able to surrender all of this: the future of my husband and all that we are going through and what that might mean if God doesn’t heal him in the way we are asking. It was a very deep and meaningful moment with the God who knows every single molecule of JT’s body. As I cried and told God that I trust Him with JT’s life, I was given a sense of peace that I cannot fully explain. On Sunday, we had a very uplifting time of prayer at our church, Unite, when the entire volunteer team prayed for JT, the worship team sang and prayed over him and pastor anointed him with oil, believing God can and will heal JT. Then, when JT’s legs went dead and he couldn’t walk, he was telling me that he is “at heaven’s gate” and “Jesus is with me” and “It’s so good!” — I didn’t freak out! Then, learning of the possibility of integrated treatment options and then speaking with the surgeon that believes he can help JT gave me a little spark of hope after what started off as a spiritually uplifting weekend but physically VERY SCARY couple of days.

 

Also with regard to strength and attitude, I want to mention how very grateful we are for the meals, help around the house, errands and just complete outpouring of love that we have received from our friends and family. We truly love each one of you and pray that God blesses you for being such a blessing to us. Join our Here to Serve Care Community if you want to be part of this.

Levity

JT dictating again… Sometimes I will buy something on Amazon and get confused on what I actually purchased. I recently thought I purchased a scrubber for the sink, but when my confirmation email arrived I saw women’s slippers!! I asked Amber if I had accidentally ordered the wrong item… I felt so frustrated with my vision in that moment. But it was merely a suggestion of what others who have purchased a scrubber “also purchase” and Amazon thought they were being helpful.

 

P.S.
JT says you should listen to Sunday’s sermon. Pastor Jeff called him out!

MRI Results

Just The Facts:

  1. We had a follow up appointment with the radio oncologist to get the results from the latest MRI (taken Tuesday).
  2. Most of the tumors have reduced in size.
  3. There is one new small tumor.
  4. The largest tumor, against the occipital lobe, has increased in size, approximately 30%.
    1. Could be that the radiation did not work and the tumor is still alive.
    2. Could be that the tumor is swollen because the radiation did work.

 

  • Next steps:
      1. Radiation of the new tumor. Probably starting sometime next week.
      2. Two neurosurgeons are reviewing the MRI to see if they can surgically remove the largest tumor that did not shrink.
      3. Doctor recommends immunotherapy — again.
      4. If surgery is not an option, possible whole brain radiation therapy, which can be very damaging to the whole brain.

    Other issues:

    Steroid side effects, coupled with my decline of vision, makes some simple tasks take me up to and hour. I am learning to be  patient despite the frustration of it sometimes taking me 30-minutes to make a pot of coffee, or a long time to put on a t-shirt, only to learn it’s on backwards and inside out. 🙂  I’m smiling right now because it’s so pathetic.

    Prayer requests

    1. Death of all cancer in my body
    2. Miraculous healing of my brain and vision: Eyesight declining fast. No more left peripheral vision; Decreased lower right peripheral; otherwise  mostly tunnel vision
    3. Weaning off steroids (when safe)
    4. Making wise medical decisions: Possible brain surgery
    5. Patience

    Levity

    The Billboard

    Our TV became too small (37″, 720p.) for me to see detail, including titles and menus. So we decided to “invest” in a new system. I did a lot of research and decided on a 4K 55″ TV, which would just fit in our designated living room space.

     

    So we marched into BestBuy, armed with our research, stood in front of the plethora of LEDs, and carefully compared sizes. Because of  the steroids and eyesight, my perception is skewed, making the 55″ look small, and the 65″ look just OK, and the 75″ even better! Tempted, we ended up walking out with the 65″, got home, set it up and discovered the TV was nice, but it looked like a freeway billboard in our little room. There was no margin; just a giant billboard taking up any last space. I got mad at myself for not sticking to the plan and ended up exchanging it for the 55″. I can lough now.

    Strength and attitude

    It’s easy to conjure up strength while feeling good or when there’s positive news. But when I don’t feel great, or when news falls short of my expectations, that’s when my faith, strength and attitude are tested. It’s easy for me to fall into the self-pity trap, but what I found to be true is God’s promise to us all about worry and His abundant peace. The Bible says to not be anxious, or worry about anything, anything; but instead, by prayer and asking, with thanksgiving and gratitude, to present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:6-7

    Friends, this what I live by. Every day — hourly, sometimes minute by minute. So it’s not by my strength, but it’s the peace God gives me that strengthens me and keeps my strength alive through Him. This is how I am able to keep my attitude in check, keep my heart full of joy, and keep feeling happy most of the time — despite this lousy physical and mental condition, as well as a mostly eminent, early death sentence. But I don’t fear death. 

    Thank you Here to Serve for making it possible for my family and friends to help our family–and many others–with meals. I can’t begin to say how helpful it is for us not to have to think about cooking on the scheduled meal nights.  Check out our Care Community to learn more and please sign up if you haven’t yet.

    We love you all and expect good things in the near future!

    JT

 

Discouraged

Just the facts

  • MRI Brain  Scan moved back another week, plus  full body CT scan to follow.
  • Eyesight continues to decline
  • No longer driving
  • My amazing boss and awesome coworkers are supporting me 100%, allowing my body to rest and repair–Stress removed.
  • No headaches in more than ten days. That’s very good.
  • Declined doctor-suggested immunotherapy and clinical trial due to chemical toxins and negative side effects. I am continuing with the diet and overall “clean eating” lifestyle instead

I finished the 30-day cannabis treatment with vegan, raw food diet. I hate to admit it, but I’m not missing meat as much as I thought I would, but I will not miss the annoying, mind-bending high of the 2-gram daily dose of cannabis oil. So now,  I can no longer be called “High JT”

  • I plan to continue with a mostly vegetarian diet. Diet includes avoiding processed foods, processed sugars, GMOs, and toxins; and eating only organic foods
  • Feeling good and healthy!

Strength and attitude

Most days, I don’t have inner strength. Although I may portray a strong “inner strength “and attitude, I am actually pretty weak and beaten down. My strength and attitude actually comes from a renewed life in Jesus Christ. He gives me my strength, hope and joy. Its not coming from me. I actually feel pissed off, ripped off, angry and discouraged by what I’m having to go through and for what I can no longer do. That’s how I feel. If I didn’t draw on the strength of Christ daily, I would run out of emotional batteries and come unraveled (as sometimes I do, ask Amber and James).

 

You see, I don’t have it all together; I sometimes fall apart emotionally. I struggle regularly with the continued decline of my eyesight. At best, I may have 50% of my normal sight. We don’t know what’s actually happening, but we speculate that the tumors have done damage to my brain. We don’t know  if it’s reversible. I deal with this reality every minute of each day! I struggle with it in everything I do. There are plenty of days that I question God’s full purpose for my affliction, but I choose to trust Him.
  
Thank you for all for your prayers and support via this blog, emails, calls and texts. The outpouring of your support helps me immensely.

Prayer requests

  • Continued death of cancer
  • Eyesight declining
  • Suspected prostate cancer
  • Patience

Levity

For Christmas, I received a new hair trimmer (It’s all about timing…). Great for trimming eyebrows too, which is the only hair left on my face. While having some brain issues, I didn’t assemble the razor correctly and accidentally shaved off part of my eyebrows. Now I am looking more like “Mr. Clean without the muscles.”

Once again, thank you for following this site and walking with us during this adventure. Your prayers, thoughts and serendipitous run-ins with you and others around town is making this potential nightmare something I will look back on as something special.

Thank you also to Katie and Here to Serve for making it possible for my family and friends to help our family–and many others–with meals. I can’t begin to say how helpful it is for us not to have to think about cooking on the scheduled meal nights.  Check out our Care Community to learn more and please sign up if you haven’t yet.

We love you all and expect good things in the near future!

JT