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.
The double brain zap is done. I laid on the table for 40 “no movement” minutes with Baroque Classical music in the background with the X-ray instrument moving super precisely to blast the two melanoma nodules in my brain (see pictures below). The personally constructed “Green Mask” held my head motionless for the duration. I may have taken a short nap to help maintain the motionless state. Then I was released to go home feeling quite normal.
Last Thursday’s MRI showed that both nodules had almost doubled in size in the three weeks between the two imagining sessions. Growth at that rate made my blood run cold, I have to admit, because there are also nodules in my lungs that are not getting zapped into oblivion. The immunotherapy teaches my immune system to attack them. I am very glad that I have MANY people praying that it will be fully effective. The good news is that there were no new nodules in my brain, something Dr. Frager said is not uncommon. There will be a follow up MRI in a couple of months, a part of the ongoing assessment.
Sherry and I took Sherry Atkins to see Christmas with The Chosen Wednesday night for her birthday. It is a MUST see.
But the 102.4 temperature I saw when I got home wasn’t good news. Two doctors told me any fever above 100.4 was a warning sign that mandated a call. But it was 10:00, I was tired and Emergency Rooms are packed at that hour. I wasn’t going to die before morning, so I went to bed. The fever broke but returned. I called the advice nurse early Thursday morning. The directions were clear – come to the ER immediately. Gladly it was virtually empty, and I was soon in the treatment room getting tested. The urinalysis was clear: bladder infection. So I got a bag of IV antibiotics and a big prescription of oral antibiotics and was released for a very good day.
I was excited about our early Friday morning flight to see Sherry’s siblings. Our upgrade to first class was just another sign of goodness. A strong 3:00 a.m. urge to go got me out of bed, but nothing came. I tried all kinds of things over the next couple of hours, but the discomfort grew to serious pain. When Sherry woke for our flight, I told her I wouldn’t be going to Tucson. Her concern and disappointment was obvious but rather than talking, my pain motived me to call the advice nurse . . . again! Sure enough a second morning in an empty ER and speedy assessments. The nurse warned me that inserting the catheter would be painful, but I only experienced immediate relief as a liter of urine drained out into the large bag.
My MVP-Gold status on Alaska served me well. When I told the nice lady what had happened and asked if I could rebook the flight down, she said sure! I called Sherry to tell her we would get to be together despite the hassle of bladder infection and the 1.5 liter bag that brought skeptical questions from security but no need to leave my window seat on the flights. I am now in Tucson Sherry at Liz and Tom’s house. We have had good time with them and with John and Shirley. I have slept a lot!
In the meantime Samantha and Joy are at our Halsey house where their family will be Saturday night to attend David’s graduation from Convergence – without us unfortunately. She discovered an unannounced guest. Guess we need to get the live trap out again or maybe go to Amazon and buy him a present.
I am super proud of David’s commitment and growth as he has spent three years working through the CBNW Convergence program. Since 2005, it has been fulfilling the mission to train the next generation of leaders for the churches. Alas, due to COVID related funding failures David’s cohort was the last and their experience was compressed so graduation occurred Saturday rather than next June. The training is done under a pastoral mentor. In David’s case that was John Hurty, pastor of Stanfield Baptist Church. John is one of “my guys” from two decades ago. Though I was sad to miss the ceremony, I am delighted that John is mentoring David, and David has been mentoring John’s son, Nathan. The mission of 2 Timothy 2:2 continues!
Pastor John Hurty praying anointing over David
The Graduates
UPDATE: The catheter went from major relief to significant annoyance pretty quickly, I have to say. I went to the nurse’s station at my local Kaiser facility on my return to PDX, hoping to end the annoyance, but alas, Dr. Burt wants it in for a week to allow complete healing from the potential damage from the stretching.
Wallace goes free!
Our return home allowed me to check on our unexpected house guest, whom Joy named “Wallace”. The live trap was occupied, I am glad to say, so I took it and him to a bushy location a half block from our house. He poked his grey nose out, liked what he saw and happily sprang out to scurry off to his new digs.
The infusion was easy. Emilie was my nurse and wonderfully careful and caring. She went through the basics of what’s involved and then started the IV. One medication in 30 minutes and the other in 90 minutes and I was done. While the infusion was going, I got a visit from a chief nurse who is a friend of a friend and a wonderful plate of cookies from Angie Maroon, a friend from church who works at Kaiser. It is a sovereign remedy!!
When I was finished Emilie said I looked a bit flushed and asked if I felt anything odd. I told her I felt a bit off kilter (I know – really helpful!!) but no dizziness, nausea, fatigue, upset stomach or anything like that. I had taken my IV pole to the restroom twice with no issues. So she sent me off feeling quite normal and I drove Sherry and me through Friday afternoon traffic, something Sherry really dislikes doing.
We stopped by Western and I greeted the two Leadership Cohort classes with whom I have deep relationships. I thanked them for prayers and support. I deeply appreciate Todd Miles teaching my theology cohort class. When I stepped into the room as that class ended, people were surpised and very glad to see me and meet Sherry. They also reported that they are now converted to Todd’s way of doing theology 😊
It has been 24 hours since the infusion ended and I am still feeling normal. I flew to San Diego to speak at Park Hill Church tomorrow morning and then hang with friends after. Monday I will spend the day taking the teaching team through Galatians, their next teaching series. That will be a blast! Then I will fly home. An indication of God’s blessing on the trip is that I was upgraded to first class both directions! A better indication is that a former student saw me sit down in the food court and joined me with some huge ministry questions.
I think the first immunotherapy session is free from side effects, which is true for many. I am profoundly grateful. God’s word to me way back when I first got the news of the two cancers was “this is not the end, keep on with what you are doing.” That is my guide. The prayer request is that my “go for it” personality would defer to any warning signs of side effects.
The next stage is Tuesday’s MRI to locate the two meloma nodules in my brain with super precision to enable the radiosurgery on December 15 to zap them and only them.
Sherry and I met with Dr. Frager this morning to review the treatment on the two BRAF-negative melanoma metastases in my brain (R parietal, R frontal). There is some exacting measurements to be done in preparation, then a single radiosurgery session to zap the two nodules which I hope will be done around December 15. Dr Frager reports that there is less than 10% chance of symptomatic impact (fatigue or seizure) which they will mitigate even further with prophylactic medication.
The picture is from the MRI they did a couple of weeks ago. It shows the larger nodule on the back right side of my brain (the picture is a mirror image with eyes at the top). It is just under 1 centimeter or about half an inch in diameter.
The smaller nodule is less than .3 centimeters or about 1/10 of an inch. It is so small that they considered doing nothing with it and waiting to see what the immunotherpy might accomplish. But Dr. Frager said the immunotherapy which is quite effective in the rest of the body hardly penetrates into the brain. So I affirmed doing the radiosurgery to both spots. Dr. Frager consulted with Dr. Mashru and it will be a “two-fer” in a single radiosurgery session.
If you want to see a larger version of the pictures click here.
The immunotherapy infusion will be Friday afternoon, beginning at 1:00. Dr Frager confirmed that most patients tolerate it well and the treatments are quite effective. Of course results vary by person and I would add by prayers of the saints on our behalf – and there are many for which we are extremely grateful.
I am in Boise where I co-teach my Leadership Cohort class (with Steve Walker) all day Tuesday. I would normally hang with Bethany (our non-legal daughter), Jesse and the three of their five who are not in school before I fly home. Unfortunately Jesse and Bethany are are not feeling well so I went directly to the airport with only a brief and distanced check in on Monday. I did get to tour the addition to their house which will finally give room for their family
I got a call from Kaiser as I was riding in an Uber to the Dallas Fort Worth airport informing me of the schedule of my immunotherapy infusions: Friday, December 3, Thursday, December 23, and Friday, January 14. All will begin at 1:00 and take the rest of the afternoon. Many times immunotherapy has little or no side effects because it stimulates the immune system. This is quite different than chemotherapy which poisons the cancer cells even more than it poisons the whole body. So my prayer is that I will be in the majority who have little negative effects.
The radiation oncologist and have a meeting Monday morning to discuss the radiation treatment for the larger melanoma spot in my brain.
In the meantime, Sherry and I are having a great time with Donn and Susan and Elizabeth and MIchael here in Kansas City. Donn and I went to the Chiefs game after church yesterday. Here is a taste of what we saw. You will hear Donn loudly in the background!
Last week’s surgery, MRI, and oncologist consult left me with the understanding that I have two types of cancer: Bladder (which has been removed) and metastatic Melanoma with nodules in every lobe of my lungs, two places in my brain and apparently in my liver near my gall bladder. Most of the nodules are quite small. The doctors keep telling me how rare it is to have two types of cancer at the same time.
I continue to marvel that the blood in my urine led to a CT scan which providentially revealed the nodules in my lungs. Otherwise there is no telling how much they would have grown to produce symptoms. Early discovery means small nodules make for much more effective treatment.
Dr. Frager is the radiation oncologist who will be supervising the radiation treatment on the larger nodule in my brain. We will meet on Monday, Nov. 29 to set up that process.
The strike against the Kaiser system was averted so I am expecting a call today or tomorrow from the oncology folk to set up the immunology infusions (opdivo and yervoy for all y’all curious folk). Each treatment will take about 4 hours and be done every three weeks. After four treatments there will be a scan to check the effectiveness.
My big question is what will be the side effects of the two treatment modalities. Since they vary widely from person to person those life impacting questions are unanswerable for now.
A challenging thing is explaining to people that I have no cancer symptoms at all. I sleep well, feel normally strong, and am enjoying a full and fulfilling fife of family and ministry.
The great anticipation is removing my catheter in Wednesday’s follow up visit with Dr. Burt to check on the success of the bladder cancer removal. There will be great rejoicing when I am once again living a bag free existence! UPDATE: The catheter is extricated and I am now free. Dr. Burt confirmed that the bladder cancer was lowgrade so he does not see any need for any chemotherapy or other stuff – just have a look every 6 months in case it recurs.
UPDATE: I am headed to Ft. Worth for Evnagelical Theological Society where I will lead the “Evangelicals and Women” session. It will be outstanding. But three of the five presenters cannot be present because of international travel restrictions, so I am taking portable equipment to bring them in by Zoom. Then to Kansas City to meet Sherry and hang with Donn, my son and and his family for Thanksgiving. While we are there, we will go to Topeka to visit Sherry’s uncle and also to visit Quentin Heights Elementary School where I did 5th and 6th grades back in the mid fifties!
Sunday: Drive up to get outdoor nurses station for the COVID test required for my surgert with the nurses working in the rain. The nose swabbing briefly interrupted me doing deep spiritual work with a friend who has been hurt in a life event.
Monday: I will get a call somewhere in a day full of appointments letting me know what time to report on Tuesday. UPDATE: We check in at 9:45. For sake of my stomach this is not a good time. With an 8 hour no food order it will be a long time for breakfast.
Tuesday: My gall bladder extraction surgery will compete with teaching (by Zoom) my Boise Leadership Cohort and leading (by Zoom) an evening Q&R with the Leadership Development team at Reach Church, Kirkland. I am hoping the team can get a picture of my cancerous bush for me before they remove it. The surgery will be under full anesthesia out patient with no incision. Dr. Burt thinks it is early so the surgery and the chemo injection at the wound site will be the end of this cancer. UPDATE: The surgery is done and I am home, 5 1/2 hours after we left. Dr. Burt had to go deeper into the bladder wall to get all the cancer out so I had to come home what a catherter which is VERY annoying. Other than that I am doing well. Starting my day with 2 hours with the Boise Cohort before the surgery was a joy. I really shocked them when I joined after the surgery, but no longer as teacher.The is food and sleep in my near future! BTW, I did ask about the picture. I don’t yet know if he remembered to take it. Hope so. I will get the biopsy analysis when I meet with him next week.
Wednesday: A day full of faculty meetings and such. We’ll see how much I am up to doing. David (our son) and Zach will be with us for supper and bunking before their final Converge class.
Thursday: Normal activities will be spaced around a noon time MRI of my brain to see if the melanoma has metastasized there. The PET scan from a couple of weeks ago showed three metabolic hot spots (bladder, gall bladder and lungs) but it can’t differentiate cancer hot spots from thinking hot spots. So the MRI will answer Sherry’s burning question: “Does Gerry have a brain in his head??”. UPDATE: I have scientific proof – there is a brain in my head. Sherry’s follow up question came post MRI: “Is it functioning?”
Sherry will join me at 3:30 for an oncology consult with Dr. Mashru. He will give us a full layout of the melanoma in my lungs, immunology treatment with schedule and possible side effects. This will be a big relief to my “plan my life” personality! UPDATE: The MRI showed that there are two melanoma spots on my brain. This is not surprising since when melanoma moves brain, lungs and liver are common spots. They will do radiation on one of them. Immunotherapy for all the nodules, brain, lungs and the spot by the gall bladder. Schedule for treatment will be determined soon. I will do a full post after I digest the ream of information I have now. Sherry is “on pause” and I am still living God’s word to me: “this is not the end. Keep on with what you are doing.”
Friday: I will teach my all day Leaderhship Cohort theology class followed up with supper with Tim Dalrymple and Tucker Fleishman, third year cohorters flying in from Chicago and Las Vegas for their class.
Saturday: All day elder “attack” at Grace. It is really a bi-annual major strategic planning session.
Dr. Corcoran called this afternoon (Tuesday Oct. 26) in between surgeries to give us the follow up on Thursday’s biopsy. That he would make time in a busy afternoon shows the commitment to proactive care which I deeply appreciate!
He confirmed what we expected: it is metastatic melanoma. The BRAF studies which will indicate responsiveness to immunotherapy are pending. He is referring me to the same oncologist who saw me when I had the melonoma diagnosis 6 years ago for follow up work. That adds a fifth doctor to the care team along with who know how many other medical professionals.
The bladder cancer extraction is scheduled for Nov 9. There will be a biopsy of that seemly unrelated cancer. The gall bladder cancer is on hold right now waiting on the other two biopsies. How there can be three different cancers at the same time is baffling to everyone! The melanoma is the bigger issue at this time but all three cancers need treatment.
Sherry is up mostly up but also down sometimes. On the down side, she finds that she can’t concentrate, but not really anxious about me. We are enjoying the husband/wife growing old together with strong family and friend connections a lot.
I am doing fine. No symptoms at all. Same grumpy old guy who believes God is saying, “This is not the end, keep on with what you are doing.” I find there is a LOT of wonderful things that I love doing with and for Jesus that are fruitful and fulling.
I will follow up as more information comes to light.
We had everything pointed to Sherry taking me to the Surgicenter at 2:00 today (Monday) for Dr. Burt and team to remove the beautiful but dangerous little bush in my bladder. However, I just got a call (9:30) from Dr. Burt that pneumothorax makes anesthesia unsafe, so surgery will be postponed for a couple of weeks.
It’s odd to have this much cancer in my body but no symptoms or discomfort at all. That along with a positive medical prognosis and God’s word to me, “This is not the end. Keep on with what you are doing” leaves me in a good place, sleeping well and doing what I love.
