The goal posts move, again

Update post

“I’ve been told’ve been told that all these ties would surely bind
And hold me tight
Hold me tight
‘Cause I’m hanging at the end of my own line
And I hope that all these ties will surely bind

When, oh when, will I be changed?
When, oh when, will I be changed?
From this devil that I am
When, oh when, will I be changed?

Josh Ritter, When will I be changed?

It’s been a rough roller coaster folks. I was planning on one of my pondering post (I’ll still get to it) but first I want to give an update.

Written from someone more cable of clear communication at the moment (Paige):

John had been growing steadily worse since [last] Friday. He had a previously scheduled appointment with his neurosurgeon on Monday, which was supposed to be our final check with him, but John did not do well on the neurological exam, so he had an MRI Monday night. The MRI showed increased swelling that is crossing the center line again

The neurosurgeon and radiation oncologist agree that John is still suffering from radiation necrosis, which is causing the swelling. Though the surgery cleared out as much as could be taken out, apparently some had seeped into surrounding tissue. The hope is that returning John to the highest doses of steroids for 1-2 more months will help that tissue heal on its own, now that the surgery cleared most of it out. If that does not occur after a couple of months, then we will have to consider other options. The Radiation Oncologist says that he has seen this play out in other patients, and most see significant improvement within two months. 

One of the hardest parts is that I was sure I was walking into an appointment that was going to grant me freedoms, not take them away. It’s also a return to scheduled pill taking, which I thought I was over with for the most part– steroids every 8 hours, including the middle of the night. Previously, I just had to take a dose in the morning and that’s it– I want badly to get back to that. It helped with sleep and daily routine very much. I don’t like living by the clock again, always within reach of a jar of pills.

Writing and reading bring me a lot of relief so that’s nice. I also think LEGO building is really helping my brain. There’s a passage in The Art of Learning by chess phenom, Josh Watskin, when he talks about playing twelve players simultaneously. Which usually wasn’t challenging for him (similar to scenes in The Queen’s Gambit) but inevitability someone would cheat and move pieces when he left the room and upon returning, it was the most confusing experience ever. Nothing would make sense until he pieced together that the opponent had cheated and that would make reality right again. The same thing happens to me sometimes in daily life, when I’m trying to get my brain right. But no one is cheating, it’s just life and it’s just my brain trying to figure things out again— I don’t like it. I don’t like that I can’t take a walk by myself or pick up my son and put him on my shoulders or carry my daughter downstairs when she’s sleepy and doesn’t want to wake up for school yet. I still can’t drive, wash my hair or cut it. But every appointment seems to push these events further out and not closer. The messaging from the doctors seems to get more murky, not clear. It’s suffocating. I’m not dealing with cancer, so sometimes the reaction from various doctors and centers seems to be, “What’s the problem?”

The steroids make me hungry and emotional– everything makes me cry including detergent commercials (“they got the stain out!”)I’m eating all the time. I’m the most I’ve ever weighed (“puffy John”). Exercise is out of the question at the moment. Diet is difficult when you can’t scan the grocery isles and be very selective about nutritious food. (keep in mind I can’t drive.)
I’m extremely grateful for everyone who has donated cash for take out of money for activities that help my brain like LEGO or craft projects– thank you so much. It’s really helping.

To finish up here. I don’t usually get extremely religious or preachy but sometimes you hear something you simply must repeat. My apologies if you find the below offensive or a turn-off. It’s my blog so I get to post it. Please move on if it doesn’t strike a chord with you. But denouncing Nazis shouldn’t be a difficult thing to align yourself with. I am writing this blog from my grandfather’s desk who was a POW in WWII and fought with his life against Nazis for the freedoms we have today. To watch some of us idly standby and dispose of accountability in the defense of an empty authoritarian leader who offers no truth and nothing but false promises is more than just heartbreaking, it’s a bridge to despair.
The following passage is from my pastor’s sermon 2 weeks ago. I don’t think many have the guts to get up and say this to a room full of diverse and unknown opinions so that’s why I think it bears repeating on my blog. Take it or leave it but don’t stand along side Nazis please.

“These unclean spirits traffic in hate and bigotry, racism and xenophobia, and are fueling a global rise in authoritarianism—sometimes called the new fascism— as would-be strong-men-and-women around the globe prey on the fears and psychological vulnerabilities  of people who are all-too-ready to believe and follow  anyone willing to entice them with lies and empty promises. 
This global phenomenon is like the religious cults of yesterday, only more powerful and infectious due to the pervasive reach of social media.These forces of death at work in America, and among American Christians, as the insurrection at the Capitol provided clear evidence.
These forces of death  are at work against the goodness of life, but Jesus has come, in word and deed, to stand against the forces of death. Now you may prefer that your pastor avoid these things in his sermons. And frankly, it would be easier if I did. And it would be easier to avoid talking about these things, if it weren’t for our fellow Christians who were carrying “Jesus” flags,  alongside Confederate flags and flags promoting violent insurrection, as they stormed the halls of our democracy, or displaying a “Jesus Saves” sign  alongside a gallows built to threaten our elected officials.
My Christian friends,  insurrection in the name of White Christian Nationalism fueled by lies and false conspiracy theories, is not the work or the word of Jesus.  It is the work of false prophets. 
Whatever spirit is possessing the White Supremacist mob  is every bit as unclean as the spirit possessing the man in the synagogue at Capernaum.  
Given that this past Wednesday was Holocaust Remembrance Day,  there is another rule of thumb that I should mention  on discerning false prophets and unclean spirits:  that is,  the presence of Nazis in the crowd.“Be they “neo-Nazis, casual Nazis, master race Nazis,  or the latest-whatever-…-Nazis… if they are on [one] side of the demonstration?  [That is] the wrong side.
It is tough to argue moral equivalence when…standing next to a Nazi.  Look to [the] right.  Is there a guy wearing a 6MWE (6 million wasn’t enough) t-shirt?  [That’s] the wrong side.  Look to [the] left.  If that guy is wearing a Camp Auschwitz t-shirt? Wrong side. Are speakers being applauded for referring to things that Hitler got right?  Wrong side.
The forces of death  are at work against the goodness of life… but Jesus has come, in word and deed, to stand against the forces of death. To the extent we stand in resistance to those forces, we stand with Jesus, and are following him. 
We have bronze plaques in our sanctuary bearing the names of Fourth Pres members who offered up their lives in the World Wars fighting against  these forces of death. May we find courage in remembering their sacrifice as we are called to stand against these forces of death— these same forces of death—today. God promised a prophet like Moses, saying  Anyone who does not heed the words that the prophet shall speak in my name,  I myself will hold accountable. Friends, the gospels proclaim that Jesus was and is that prophet.  And we all—all of us— will be held accountable to his words.
You know, these are difficult days. And it give me no pleasure to have to preach sermons like this. I long for the day when I don’t have to. But the gospel demands it.
The gospel calls on us to stand under the authority of the one who was willing, in both word and deed, to confront the powers that destroy life to call them what they are, and to speak a word that sets free  those who have been enslaved by the unclean spirits of the age. 
The gospel may call forth convulsions for those under the spell of the unclean, but they are convulsions  on the way to freedom. 
Friends, let us stand together  under the authority of the one who gives life to the world. Jesus Christ our Lord.
In him—in the Jesus we come to know by a careful reading of the gospels— the kingdom of God has come near; 
Let us all repent,  and believe the good news.

Struggles and some good news

Now I’m trying to mend my ways
I had enough of pain and bad will
Good enough for you someday
Till then, it’s a losing battle…

It’s always been in my nature to be the beast
Blame the maker but stay with me

Josh Ritter, Losing Battles

Hello everyone! I am glad to be back and writing again. I am pacing myself very carefully considering my strict screen / reading time limitations. I’ve been very eager to write and update but haven’t been able to due to those restrictions / limitations (post surgery was limited to five minutes a day of any screen time).

The second time has been much more of a struggle. The hospital stay was filled with lots of intense situations. My surgery went fine but protocol requires one night in the ICU. While I was there, there was no ICU room available so the hospital converted the post-op room into an overflow ICU. I was stationed there for one night, checked in on at every hour to make sure I was stable. The things that I heard and were happening in that overflow ICU. It was brutal. I had a perimeter of curtain drew around me so I couldn’t see anything (and really didn’t want to) but I could hear everything. Lots of moaning and suffering. The hospital staff was doing their best but you knew there were stretched too thin and worn down. Nearly everyone I talked to was on a temporary “floating assignment” and away from where they normally work. I overhead talk of how many nurses were calling in sick because they themselves had tested positive for COVID. Still, the nurses were there, holding the line, doing their jobs. It felt like a military situation in someways. I thought a lot about institutions (like hospitals and healthcare) and mission (this was more than just a job to these men and women– there had to be some higher calling and strong purpose to what they do everyday for their job). Even though the results were not A+, these men and women were holding it together by their own sheer grit. Still, being in the hospital, espeically the overflow ICU felt like being in a bomb waiting to explode and I wanted to get out of there (I can still hear the sounds from that night). I wore my facemask nearly all the time. One time Paige found me with my facemask and eyemask on (I brought the eyemask so I could sleep, the lights stay on in the overflow ICU 24 hours) I must’ve looked like a cross between Darth Vader and Bane, trying to sleep. I was very nervous about contracting COVID the entire time. At one point Paige had to take my facemask away so I wouldn’t try to sleep with it on.

One of the good things was how well I was doing post surgery. As opposed to the first cranitomy (or cranny as my neurosurgeon starting referring to them), I remember it taking a while to get “with it” and feel lucid. This time I was lucid and with it from the moment of waking up (still in the operating room!). I remember looking at my hands and pumping each hand to make sure I had motion on each side of my body…I did! Paige got to come back and see me and she was blown away on how well I looked and well I was communicating. My neurosurgeon talked with me and I got to hear how well the surgery went.
You don’t know this, but there was a strong chance they would find cancer when they opened me up again. At our consult at Wake Forest, the surgeon there said they find it, “a lot”, if they find it, they remove it. The also were installing “chemo wafers” on my brain in case there was ever a reoccurance. These “chemo wafers” are supposed to be especially good at treating melanoma. So when they operated on me, there would be taking a sample of my brain tissue, freezing it for 20 minutes, and running a short-term pathology to see if it was malignant or not. Any other samples obtained would be send to long term pathology which takes two weeks but would determine if the sample was cancer tumor or not (this was how I was first diagnosed with metastatic melanoma). Well, when I came to the first question I had for my neurosurgeon was “What was the path?” Response: “Necrosis. Dead brain tissue. There’s another sample sent to long-term path.” I knew what that meant– I wouldn’t know long term path for a couple of weeks. But in the short term, they hadn’t found cancer, only dead brain tissue consistent with necrosis. This was very good news!

Continue reading “Struggles and some good news”

My Survivalship Story Revised- and an Update

An update about this week

[A lot has happened this month. My last post discussed the timing of my needed urgent surgery. I was told that because of insurance reasons I would not know until the day before the surgery but they would go ahead and schedule it. So the surgery was scheduled for Tuesday, December 29th. Because insurance offices were already closed for the holidays, we would not know officially until Monday December 28th if it would be approved (even though it’s an urgent surgery I supposed their protocols require attention since the surgery would be before the end-of-the year). Well, I got the call and the surgery is on for tomorrow. The next time you see a picture of me, my hair will be a lot shorter. Tomorrow at 9am I report to the hospital for another craniotomy to remove the dead brain tissue. It’s been a difficult month and the anticipation leading up to this surgery has been brutal. The drugs I’ve been on to keep my brain swelling in check have worked well for my brain but my body is ready to surrender to the needed recovery that will have to take place over this next week. There has been a lot of anxiety, shaking, crying, and insomnia. It’s been hard to bare that during Christmas. I’m looking forward to getting this done, getting back home and recovering and starting to feel like myself again.

Paige is going into full caretaker-mode and will be my visitor during my hospital stay. We still don’t know yet how that fully works and won’t until tomorrow. I have some family driving up to see me but with COVID protocols it’s all a mess so we all just have to wait and see. It’s a lot of impossible situations.

Thank you all for your support and prayers. If you’d like to do something for me or my family during my recovery, please wait until I get home from the hospital and I’ll get the word out about what can be done (meals, etc.).

I plan on blogging during my recovery. From what I understand, my limitations and restrictions will be the same as before. So we’ll just have to see.]

Some news about the direction of the blog

I haven’t posted in a while. It’s not because I haven’t been writing. It’s because since the seizure I’ve been thinking a great deal about what I want this blog to be and some goals that I have in mind.

After a lot of thought and discussion with Paige, the wisest one in the household, I’d like this blog to start featuring survivialship stories. I believe there is a critical need for positive survival stories for those facing cancer or those who have a loved one facing cancer. I sought those out when I underwent my treatment and I clung to those stories like rosary beads. Even with my limited reintroduction to the world, I’ve heard other success stories in my own community and want to share them. I don’t want to focus on figures that can take private jets to the most advanced medical centers in the world for the best treatment. Rather, I’d like to focus on people and families you and I would come across in our daily lives. And there are so many stories. Cancer is not going away. But we keep surviving and it’s import to keep reminding ourselves of that. Our stories not only contain the heavy pathos and revelations that only those who’ve stood next to death can feel. But these stories contain details– details that may help you, or someone in your family who may be affected by cancer. If there’s even a chance that it helps only one person then let’s keep sharing these stories.

While thinking about where to start it became starkly apparent that my story had many holes in it to fill in. If you’ve read my blog since I start writing it in May 2019 and you read my original ‘My Journey’ page, then you read my experiences right up to the point of my first PET scan. I did not even yet know where the cancer was in my body and what my treatment might be. In the last couple months I’ve been working to fill in the gaps of the story. To tell my survivorship story from going to work as usual on a Thursday morning, discovering a malignant brain tumor later that day, to finding my tests results in late August that my brain and body were clear of any detectable signs of cancer. So it the most natural place to start was my own story.
I know many of you read the original post. This one is much longer and contains a lot more detail– but I promise you, this will help you or someone you love that has to deal with cancer and that’s going to happen to you at some point in your life. I’m sorry, but that is a reality.

And to be clear, my struggles are not over. But like chapters in a book, the revised Stage 4 Cancer Survivalship Story page is the story of my cancer survivialship, not my struggles with immunotherapy-induced hepatitis or my ongoing struggles with necrosis. But at 26,000+ words I had to break somewhere. And, many struggles with cancer end up being with side-effects of the treatment itself, which I feel deserves its own attention due to the detailed nature of what goes on in our mysterious bodies after we receive these amazing but still yet still nebulous treatments. As an expert melanoma doctor at Duke Cancer Center once said, “Sometimes, I fee like we’re still in the dark ages with these treatments.”

So here is my story again. It’s Rebooted. There are more details. Some dates have been corrected. Some original memories righted. Memory is a funny thing. I wrote what I remembered but it’s only after talking to family and reflecting on it more that I could recall that what I wrote was not actually what happened sometimes. For instance, my family wasn’t there in the ICU to see me wake up post-surgery. That’s crazy. Family wouldn’t be allowed in until I was awake, conscious, and stable. My mother didn’t leave my side while I dreamed I was dying and had an out-of-body experience. She was sitting right next to me because no one else was with me at the time. So, this revising my own survivorship story let me reflect on those details, and piece together our insane calendar of events that was the summer of 2019.

I’m eager to start gather more survivorship stories. Unfortunately, I think I’ll have to wait until I can sit next to someone at a restaurant and talk about their experience with cancer intimately for multiple hours. COVID times are not the best of times for cancer close talk.

I still intend to publish posts about my spiritual ponderings. I’ve added some categories (as if that matters to readers) for book reviews, reflections, survivorship stories, and updates. I still have yet to decide what to do with the “updates” section. I’d like to keep everyone who wants to be up-to-date with my health but I don’t want to overwhelm anyone or have redundant posts. Please reply with a suggestions.

The Hard Road Ahead

It’s been a while since my last update or blog post.

This is mostly an update. Sorry no picture for this post.

While Christmas approaches we have been through a lot and are about to go through a lot more.

I was in the hospital last week for brain swelling. It’s the worst I’ve looked and felt through this entire experience. I lost feeling on most of the left side of my body. I couldn’t use my left hand (I’m left handed). Hand-writing and daily tasks became extremely difficult. I needed a STAT MRI which showed radiation necrosis swelling in my brain. It was significant enough that it was pushing on the other side of my brain and creating another mass-shift– disrupting the center line of the two brain sides of the brain. The results were the same “whooshing migrate” headaches I felt in April 2019 but also the loss of strength on the left side of my body. This included my face. Paige said it looked like I had been to the dentist. I had slowly noticed this happening but I had conflated it with another issue (taper off of another drug). After my MRI result discussion I was directed to increase my steroid intake, which should also help with the control of the left side of my body. Unfortunately, by this time the swelling was so bad it was causing serve nausea and I couldn’t even hold down water. So every time I took medicine I threw it up. At an appointment at the cancer center they took a look at me and sent me to the hospital for IV fluids and IV steroids. In the meantime they made me an appointment at Wake Forest Hospital for a surgical consult about a less invasive procedure to remove the dead brain tissue from the necrosis, which would stop the swelling. The appointment was set for Monday 12/14/20. I would have to improve by then.

To review, in June 2019 I received stereotatic radiation treatment to my brain to kill any remaining cancer cells possibly left there after my tumor removal surgery. One possible side effect is necrosis, or dead brain tissue. We’ve since learned it appears 15-18 months after treatment which falls in this window. My radiation oncologist said I appeared to be a “text-book” case of necrosis.
It’s not cancer but it does have its own serious issues that need to be handled. We known that I would probably need to have a procedure to remove this tissue but previous appointments were optimistic that this procedure could wait until a various time in 2021, possibly after COVID numbers went down. At the same time they also proposed a less invasive procedure called Auto-LITT that showed a potentially incredible recovery time. Two of my doctors recommended Wake Forrest for the procedure. A consult was set up for next Monday 12/14/20.
My hospital admission was set up with the express goal of getting me healthy enough in time to a surgical consult at Wake Forrest to evaluate me for this procedure.

Continue reading “The Hard Road Ahead”