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.