Preparing to resume immunotherapy

Treatments: My blood panel numbers continue to be good, and the weekly reduction of prednisone continues. I have gone from 80 mg (huge dose!) to 30 mg with no problems. The myasthenia gravis which I call droopy/stoopy also is improving: first I shed the neck brace, then the double eye tape and then the walker. I live my life without appliances now I am glad to say. The plan to restart the bi-weekly one medication immunotherapy (Opdivo) infusions on March 25 looks promising.

Busy Life: The Salem Community Retreat (below) was a blast! We spent our time wrestling with Galatians and life as well as hanging with Cyndee. She and Sherry fought chicken riots on the Wii between retreat sessions and doing Cannon Beach food.

Tuesday-Wednesday (3/1-2): Bay Area Cohort in San Jose; Friday (3/4): Portland Bible Leadership Cohort; Monday-Tuesday (3/7-8): Boise Leadership Cohort along with time with the Schlender family while avoiding sick kids ☹; Thursday 3/10): Zoom Leadership Cohort from my office with students around the world including Jon Markey who has lived his whole life in Ukraine. He is now in Hungary trying to get people to safety and supplies to people who are trying to live in the war zone; Friday (3/11): Portland Theology Leadership Cohort; Saturday-Sunday (3/12-13): family times and preach on Jeremiah 29:1-14 at Grace; Monday-Friday (3/14-18): Costa Mesa: Theology and Bible Leadership Cohorts; Saturday-Tuesday (3/19-22): 54th anniversary at Ester Lee Motel in Lincoln City finishing with our traditional feast at Salty’s on the Columbia; 9:00 March 25 Immunotherapy infusion – Hopefully. There is all sorts of Professor Gerry life packed around this of course.

Ukraine: I have friends, nationals and ex-pats, living in both Ukraine and Russia. My heart goes out to them as they are being devastated by the war in Ukraine and the economic collapse in both countries. I heard a Ukrainian pastor tell of a Mom in his church who can neither get baby formula nor produce breast milk because of the terrible stress the war in their city. This is one of millions of stories. It is very personal to go to the Odesa Theological Seminary Facebook page https://www.facebook.com/odesasem as I have taught there many times.

I am working on Sunday’s sermon at Grace https://www.gracecc.net/ on Jer. 29:1-14 where Jeremiah tells the captives to pray for the peace and prosperity of their enslaving city of Babylon. Peace makes sense, but also that it prosper???? (Jer. 29:7)

Then I think of Paul’s exhortation to pray for kings (that was the terrible tyrant, Nero, in his day!!!) that we may live peaceful and quiet lives in all godliness and holiness. (1 Tim. 2:1-2).

And then Jesus tells me “to love your enemies and pray for those who persecute you, that you may be children of your Father in heaven.” (Matt. 5:44-45)

Being a Jesus follower messes with my mind and spirit!

Next Treatment Steps

We are moving back to resuming the immunotherapy which has been quite effective. Based on the good blood panel numbers and scan results, Dr. Mashru is now weaning me off of the Prednisone. Once that is done, then we’ll restart the one medication immunotherapy (Opdivo). That will mean weekly blood panels to ensure that the liver distress numbers stay in normal range. If they do, then the bi-weekly infusions will resume in a month, March 25. The contingency is that the side effects must not flare up again.

Sherry and I will head to Cannon Beach Friday. I will be the speaker for Community, a role I have had for about three decades! We have done much life together with these fine people. We will also get to hang with Cyndee. I sense Pig ‘n Pancake bacon in our near future!!

Overcoming Side Effects

CT Scan: The radiologist interpretation of my lungs and pleura: “Marked interval decrease in size of the numerous bilateral pulmonary nodules.  For example, a right apical micronodule measures 9 mm, previously 11 mm.  A 5 mm right upper lobe micronodule previously measured 19 mm.  A left upper lobe nodule measuring 8 mm previously measured 12 mm.  A pleural-based mass of the left lower lobe measuring 0.7 x 1.9 cm previously measured 3.8 x 2.4 cm.  No definite new or enlarging pulmonary nodule.” All the other organs are unremarkable!!   

Myasthenia Gravis: I am going eye tapeless for the first time in a month😳 For the whole day, I was “appliance free” – no neck brace, no walker and no tape. The eyelid droop that began on January 20 quickly went to about 80% droop, so I resorted to the taped eyelids. This morning it was about 40% and I was able to look ahead. So I took tape with me but never used it. I still hunch when I walk unless I consciously stand straight.

Pre-infusion Blood Panel: My liver distress numbers are back in normal range again 😊👍🎯🙏 All the numbers from today’s panel are in or very near normal ranges.

Steroids: My Prednisone was dropped from 80 mg to 60 mg last week as liver distress numbers improved. I expect that will go down again very soon. I have a large quantity of the other steroid the Neurologist prescribed. Both meds seem to be having their intended results.

Next Treatment: I will see Dr. Mashru, the oncologist team lead who is a melanoma expert, on Wednesday morning. He will make the decisions on next treat steps. I have a single medication (Opdivo) infusion scheduled for Thursday afternoon. The previous infusions were double medication (Opdivo and Yervoy) and had all the negative side effects, resulting in the large doses of Prednisone.

Costs: I see from a bill that a single double med infusion costs almost $70,000!!! To date, I have had three of them. I am profoundly grateful for the great coverage Western’s insurance plan. My out of pocket annual maximum is $2,000.

Nightbirde: I was captivated by her America’s Got Talent son, “It’s OK” sung as her cancer came back for the third time. She brought Simon Cowell to tears! I just discovered that she went to be with Jesus yesterday. What a powerful testimony. She speaks her faith here. While her journey was very different than mine, I want my story to speak as loudly of Jesus’ empowering presence as hers.

Quick Update

No results on Monday’s CT scan yet. That will tell us the impact of the immunotherapy on the Melanoma nodules that are distributed throughout my lungs.

My energy levels are good with good sleep and appetite. The only pain is from my hunched back and that is minimal so long as I keep it supported. Mostly I don’t use my walker unless I am doing longer walks.

I had a video call with Dr. Mahadeva, a neurologist, this morning. He is sure the neck weakness and droopy eye lid is myasthenia gravis – an auto-immune thing that reduces production of an enzymme that enables the normal communication between nerves and muscle He prescribed a steroid that he thinks will help pretty quickly. But it is not standard stuff on the Kaiser Pharmacy shelves, so I will not get it until Thursday.

The other encouraging news is that my liver enzyme numbers are coming back up so Dr. Mashru reduced my Prednisone from 80 mg to 60 mg. Happy liver, happy Gerry!

I flew to San Jose today to teach my cohort class tomorrow. Very fun and low stress since everyone takes care of me. I’ll be back home Wednesday night and be with Sherry for a couple of weeks.

As I was driving home from a blood draw at Kaiser I saw this most dramatic rainbow. By the time i got to where I could pull over for a picture it was only half as large – but what a symbol of joy and hope in the dark of the rain clouds. I sing joy in the presence and power of the Lord who strengthens and heals and gives me opportunity to do what I love!

Living with Diminishing Side Effects

The background (below): I was traveling down the freeway of immunotherapy at 60 miles an hour.. Upon discovering that the immunotherapy was attacking my liver and apparently causing difficutl side effects, Dr. Mashru threw us into reverse! He put the ummunotherapy on hold and started 80mg per day of Prednisone to focus healing on my liver .

Bullet Points: (1) The muscles in my neck and back are regaining strength slowly; (2) I walk with a walker using it as a prop so I can stand straight; (3) I still need tape to hold up my right eyelid; (4) I am on a no-drive order from Sherry and the doctor so Sherry has become my personal driver; (5) Life is very fulfilling in surprising ways.

The Rest of the Story: Kaiser Labs have drawn about half the blood in my body to do all the tests. The results so far have shown nothing significantly out of normal range other than the liver distress numbers (AST and ALT). Gladly, there neither the blood tests nor the ultrasound show any sign of hepatitis or other specific liver damage. I now have referrals to neurology and endocrinology to continue the search for the cause of the drooping eyelid.

I was warned that 80 mg of Prednisone per day could have major impact: headaches, buzzing energy levels, unexplained mood swings, sleeplessness, bloating, etc. None of these have happened, I am very glad to say.

I cancelled my trip to Boise and taught my Leadership Cohort class from the couch in our family room. It was pretty comfy, but I really missed the class side conversations and seeing our Schlender grandkids.

My other classes and responsibilities have gone on pretty much in normal. My energy levels are near normal and the walker allows me to prop my self and stand pretty straight.

Joseph Pfeiffer and Stephen Posey met in my Costa Mesa Leadership Cohort. They come from very different backgrounds but found a deep connection. They were called by God and the church to co-pastor Reality Santa Barbara I was very honored when they asked me to preach their commissioning service last weekend. We were really bummed when the difficult side effects required me to cancel the trip.

Then the pastor who was going to do the service had to cancel on Saturday. Stephen texted me to ask if it would be possible to record my commission. I quickly agreed and went to my basement office and recorded my message, the charge to Stephen and Joseph and the church and a decicatory prayer. What an incredible joy to hear that that pre-recorded message meshed exactly with what God was doing in their service.

Donn, our first born, came fo visit so we are having great conversations and looking forward to church on Sunday and a full on Super Bowl Party. It is so fun to hear Michael, his 8 year old call excitedly to talk to his :Poppy”

On Monday I will have a CT scan of my chest to check the melanoma nodules and an MRI of my brain Tuesday I will fly to San Jose for my Bay Area Cohort class. It will be low stress with people ferrying me everywhere and me sitting to do my all day teaching before I fly hom. Looks like I will not miss this class party!

Sherry continues to take care of me in wonderful ways. She is worried with my side effects, but also encuraged to see me getting stronger every day. She is showing her deep love in new ways which delights me to no end.

Difficult Side Effects and Treatment Detour

I went from strong old man to a weak old man in a couple of days.

Bullet Points: (1) my nasty rash went away; (2) Muscle weakness in my neck and back made me a stooped man; (3) Doctors and scans found no cause for this debilitating reality; (4) I have tape holding up both eyelids and walk with a walker to reinforce my weak back.

The Story: It began when I noticed a drooping right eyelid as I was combing my hair on Thursday Jan. 20. I enjoyed teaching my all day Leadership Cohort class but the droopy persisted. As I walked to my office at break i noticed that I was looking at the floor while I was walking. It was quite difficult to straighten up. This precipitated conversations with the advice nurse at Kaiser. As I described the continuing droopy eyelid and head along with blurred vision, she decided to check with the doctor. She soon called back and asked “can you come in for a CT scan tomorrow (Saturday)?” I told her that I had a cancelable trip to Southern California scheduled. She counted asking , “Can come in this evening (Friday)?” I accepted, ended class an hour early and drove to Kaiseer Interstate. The doctor did a variety of tests and noted “You don’t have Bell’s Palsy.” I said “That’s good.” She gave me a very sobering reply: “Maybe not – that points to a stoke” and sent me off to get the CT scan. I soon got the results: No stroke or brain bleed and released me.

To celebrate that, I went to So Cal and did a ministry weekend at Collective LA and my classes Tuesday – Friday in Costa Mesa which went very well and flew home Saturday. .

The students were wonderfully supportive in my weakness. They brought me lunch each day since my usual practive of going with them was not possible. They wrestled with difficult topics and took me down most valuable bunny trails. Both clsses gathered around me and prayied for me as their two day session ended. On Friday, the day I officially reached my 3/4 century mark, Criag brought me a delicious birthday cake to center the celebration.

Walking with my upper body stooped over is exhausting so I got a foam neck brace and a walker which eases difficulty a lot. You know it’s bothering me when I tell you I got wheel chair assist to the gate to deal with the difficulty of walking more than a short distance

Monday’s full ophthalmology work up found nothing. The follow up MRI of my brain, like the CT scan, was “unremarkable” which has become a favorite word! That left no answers for the cause of the muscle weakness other than some sort of a side effect of immunotherapy.

The Nurse Practitioner in today’s (Wednesday) pre-infusion appointment was baffled when I explained my droopy eyelid and fally down head. All she could say was when you turn the immune system on, you just don’t know what might happen.

She reported the symptoms and the highly elevanted aspartate aminotransferase (AST) and Alanine Aminotransferease (ALT) (liver damage indicators) to Dr. Mashru who suggested that I have hepatitis because the immunotherapy drugs have had negative impact on my liver. That was a shocking word to me to say the least.

Conclusion: The cancer focused treatments are on hold while the focus turns to my immunotherapy damaged liver. Thursday morning I will start taking 80 mg of Prednisone each morning (that’s a lot!). I still walk with the walker and wear the neck brace not knowing what is causing the muscle weakness. My eyelid droops so I am following my niece’s example: she used tape to hold her eyes open. Sherry is adamant that she will take care of me and is doing that in very concrete ways. I am laying aside my “Of course I can do it” conviction . . . to a degree.

Finally, Thursday is my Pretty Wife’s birhtday which we will celebrate in a different way this year.

Infusion #3 – And the Rash

My infusions are getting to be routine things. The only questions are which nurse (Kim this time), which station and which color of tape on my arm..

I did forget Sherry’s foam reading pillow in the waiting room. A text to Sherry and the nice receptionist brought it to me. It makes reading my book easier.

This time it was Christopher Wright, Here Are Your Gods. That is some research for Sunday’s sermon “Repentance: The Way Back” from Jeremiah 3. I need to name the gods people worhip todday since we don’t have temples to Ba’al or Asherah in our towns that Christians are tempted to go to. Wright helped me see that we can find those gods that take us away from YHWH by examining what I wonder about that doesn’t lead to YHWH. Ponder the things (or people or systems) in which we place our trust to deliver us from the things we fear. He suggests the gods find their incarnations in things like wealth, sex, race, nationalism, and self-love.

The immunotherapy is having impact for sure. First, my liver numbers (AST and ALT) are up which in normal but needs watching. Second, when Sherry and I got home, I discovered that I was pretty wiped. So I went to bed early and slept solidly for 11 hours!!

The third and much bigger impact is the rash on my back. Now I need to explain that be be a Breshears is to have an itchy back. So toweling after my morning shower is a great pleasure. This rash gave itchy a whole new painful reality. I reported it to Dr. Mashru and he was not surprised. Rashes like this are a common effect of stimulating the immune system. He prescribed anointing with a magic ointment cream and taking a Zertec once a day. I am glad to report amazing results! The picture is after two anointtings and the redness is half what it was 24 hours earlier.

Now the conundrum two fold: (1) the little tube is only 2 1/2 ounces, can be refilled only after 10 days, and my back is big! (2) how to get the anointing when I leave home before Sherry gets up (she said I may wake her – which is a huge offense in my inner rule system!!). The bigger conundrum is what to do when I am traveling. Several have give Ideas in the comments and we may have a solution. I am always open to more ideas that don’t waste the precious ointment.

UPDATE: I talked with Trish, the oncology case manager and we have refills approved. I went to the pharmacy to pick one up and the pharmacist told me the insurance would not cover it since it had been less than a week. I told him the story and my conversation with Trish. He asked several questions, did a bunch of stuff on his terminal, told me he would call me back up which he soon did. I now have a tube of the magic ointment more than 5 times as large as the first and only had to do the copay!

Looking Ahead to 2022

I now have a schedule for infusions 3 through 7. Each infusion will take 3-4 hours for the process with thorough blood work reviewed by either Dr. Mashru, the melanoma specialis who is overseeing the treatments, or a member of his team.

Infusion #3 – Jan. 14 (Opdivo + Yervoy)

Infusion #4 – Feb. 3 (Opdivo + Yervoy – is this the best present for Sherry’s birthday??)

Infusion #5 – Feb. 24 (triple strength Opdivo only from here on)

Infusion #6 – Mar. 9

Infusion #7 – Mar. 25

There will be a PET scan to check the impact of the infusions on the melanoma in my lungs and liver and an MRI of my brain to confirm that the Double Brain Zap destoryed the two nodules and to see if any new ones have metastasized into my brain. Neither have been scheduled yet.

I have a VERY packed teaching schedule involving a lot of travel beginning with a Jan. 10-11 trip to Boise for my Leadership Cohort class and to see Bethany Schlender, my non-legal Daughter, along with Jesse and their five. All of this has an asterisk beside it.

God’s word to me, “this is not the end – keep on with what you are doing” is a foundation I am living by. The almost non-existent side effects of the treatments is a confirmation of His word. The pure joy of pastoring and teaching a bunch of outstanding pastor/students keeps me eager to work so long as God continues to provide strength. My commitment is to watch my body – to go while there is strength and good sleep every night. When I am tired, I live out my New Mexico heritage and take siesta.

My long time friend, Bonnie Holland, sent me this verse: My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. (Ps. 73:26 NLT) Whether I am strong or failing, I am strenghtened by the presence of the One who was “a man of suffering, and familiar with pain. (Isa. 53:3 NIV) Rather than explain suffering He entered fully into it to bring Joy, Hope, Peace and showed us how to “love your neighbor AND your enemy.”

Looking Back on the 4 Month Journey

To review in bullet points with hyperlinks to previous posts: (1) blood in my urine led to a Sept. 10 CT scan. I made a video of the journey of discovery on Oct. 10 to give context to the journey to date. (2) As I called a break in my Sept. 14 Leadership Cohort class in Boise, my phone buzzed. It was Dr. Wachsmuth calling to tell me that the CT scan showed that the blood came from bladder cancer. But he went on to report a number of nodules distributed through both lungs. That almost certainly meant the melanoma which had been treated surgically in 2015 had now moved into my lungs. (3) As I pondered and prayed that night, God spoke: “this is not the end; keep on with what you are doing.” I have lived by that word through the whole process. (4) Quite wonderous that when we visited Dr. Burt’s clinic on Sept. 28, Sherry and I saw the beautiful, but cancerous bush in my bladder in living color. (5) second contrasting CT scan of my lungs on Oct. 28 confirmed “multiple bilateral lobular solid pulmonary nodules/masses of varying sizes in all lobes” You can see the CT images of my cancerous here. (6) a PET scan on Oct. 9 showed most of my body is “unremarkable” (my new favorite word!) and three “hot spots”: bladder, lungs and gall bladder; (7) an early morning needle biopsy of my lungs was taken Thursday, Oct. 21. Unfortunately when the Doctor pierced my lung, some air escaped and I developed a pneumothorax. He immediately began removing the air, but I had to spend the night in the hospital for continuing care. That led to the famous picture of my co-teaching Prayer and Providence with Todd Miles dressed in a hospital gown sitting on my hospital bed. (8) The bladder cancer was surgically removed Tuesday, Nov. 9. The biopsy showed it to be low grade and contained, so no chemo required. We will look inside my bladder every six months from now on. (9) A PET scan does not work on the brain since the whole brain is a metabolic hot spot, so on Nov. 11, I had an MRI of my brain which showed two nodules there. (10) My first immunotherapy infusion to make my immune system hate the melanoma in my body was on Dec. 4. I had a second infusion on Dec. 24. (11) the team in radiation oncology built my “green mask” to hold my head completely still for an extremely precise MRI on Dec. 7 to map out the targets for my “Double Brain Zap” on Dec. 15. I am glad to say that there has been minimal side effects from both the radiosurgery and the immunotherapy infusion.

When I had the Melanoma before, I laid out four principles to guide me: (1) When I go to the past look for lessons, not regrets. It is easy for me to shred myself for what I did/didn’t do; (2) in the present build plans based on what I actually know so I can act wisely and responsibly rather than feeling helpless; (3) the future is where the “what if’s” are. Satan dwells there. Don’t dwell with him; (4) Jesus is in the present, look for Him. Like the bush in Exodus 3, He is easy to miss.

Infusion #2 is history

Today’s infusion #2 meant another 30 minutes of Opdivo drip followed by 90 minutes of Yervoy drip mixed with about half a bag of saline. Kayla, my nurse this time, used a very warm blanket to prepare my arm for insertion of the IV port and then turned it into an arm pad. Thank you again, Kayla!! The IV pole, AKA my dancing partner, follows me everywhere! I took my Kindle to read a theology text while I was being dripped into. Angie dropped in again for conversation and blessed us with a marvelous apple crisp. She is my hero!

At the end of the time I felt just the same as when I started the process, which is good so long as it also attacks the Melanoma nodules in my lungs and liver. The only side effect so far is a mild skin rash over much of my arms and torso.

The windows look out at the cold Portland weather which is threatening to bring snow to the valley floor Sunday. As I finished my sermon outline before going in for my infusion, I wondered if I were wasting my time and the time of the team that will prepare the fill in the blanks notes for our people.

The miraculously relieving catheter (below) became a problem as the bladder infection succumbed to the antibiotics. I contacted the urology department repeatedly asking about getting it removed. Their earliest appointment was December 30 (!!!!). So I asked Sean Roley, a neo-natal intensive care nurse who is also a member of our elder and preaching teams at Grace, if he could do me a great service. He did and I am deeply grateful.

My next infusion is January 14 followed by assessment before round two.

I continue to marvel at my continuing strength and energy and Sherry’s support as we celebrate our Advent as a cancer patient.