Update 8/24/21
A mixed bag / Still a lot of balls in the air.
Well, since my last updates a lot has happened and a lot hasn’t happened.
On June 1st (Tuesday) I went in for my MRI update.
We were hoping for a home run– we definitely didn’t get that.
Due to privacy laws– the hospital apps (like MyChart, if you use them frequently, like I do– I practically live on them), push out tests results as soon as they are submitted by whatever specialists has to submit them (in this case a radiologist). So I had my MRI at 2pm. I came home and received an alert on my phone that the radiologist had submitted his report by 3pm. There’s always a debate– do you read the “raw” report or do you wait on your doctor appointment follow-up to decipher it? Well, we made the mistake of reading the “raw” report. Items of alarm for us. 1) a new 0.5cm nodule on the left side of my brain. To us this meant reoccurrence (technically not the case, as we’d find out later) 2)the cavity where my tumor 2.5cm tumor had been removed in April 2019 had “collapsed. (!?!?)” And that the steroid use had not proved effective in shrinking the effects of the radiation necrosis. However, the report did note there was not any midline shift in the brain– meaning that the two spheres of my brain were being kept separate by the normal line that should separate them. Also, explains why I wasn’t experiencing any strong headaches or severe nausea (and no vomiting, THANKFULLY).
But reading the raw radiologist report left both of us severely bummed out. We both wanted to vomit. There was the “pit in the stomach” feeling. We weren’t hungry for dinner but forced something down to get the kids to eat too. We both saw the 0.5cm tumor on the left side of the brain as a metastasis. And were now questioning everything. Should I have forced my way into maintenance immunotherapy despite the auto-immune effect it had on my body? Should I have gone to Duke cancer center for that? For so long we had nothing to show on scans and now here we had a 0.5cm lesion on the OTHER side of my brain…what would that mean long-term? I remembered that when I got my first cyberknife procedure there were two other small lesions that had to be zapped as well. Lesions found but too small for surgery. A day later Paige and I both recalled and discussed that. Even though radiation was pretty much off the table because of the inflammation / necrosis it was causing on the right side of my brain, could we undergo the cyberknife again because this was the left side of my brain and a very small lesion?
We had previously scheduled follow-ups with my neurologist, radiation oncologist, and I reached out to schedule a phone or virtual visit with my oncologist about this new finding.
That very Saturday I was due to take my 9 year-old daughter down to Tampa in a 10-hour drive (it would end up taking 11) for her first overnight camp. That seemed off the table– what would be happening now? Would I by driving up to Duke for a second opinion or more of their treatment(s)? What did this mean for the rest of my body? Are their more spots yet to be found that would impact my day-to-day living? Was our entire summer just blown out of the water now? We had pictured that the worst news would be able the edema (brain swelling) and the possible lack of effectiveness of the steroids. We didn’t anticipate a new lesion and reoccurrence with a capital R.
Our appointment the next day with my neurosurgeon was not very helpful. He’s operated on my brain twice but besides basic checks he didn’t have much to tell us, except that the right-side cavity collapse was “typical.” So nothing to worry about but as far as the new lesions and the steroid efficacy and possible continued use, there wasn’t any real guidance he could give us except to see my other doctors. The field of medicine is so broad. He didn’t see any problem with me driving down to Tampa for my daughter’s camp as long as I took breaks, listened to my body, was careful, also got that advise from the other doctors as well. We still had the “pit in the stomach” feeling all day that day. It seemed like we were facing the beginning of something big and terrible. And here we were with the kids trying to start their summer of joy. Will would be the only kid in the house with his Mama for an entire week– something we knew he would be excited and happy about. And Mina would be going to sleepaway camp, her first overnight experience away from home ever. And she’d be doing it at the camp I myself grew up going to and ended up working at for many years in summers during college, in various roles. The camp is part of my soul; I wrote about it last year in my “Camp is a Pure Land” blog post, when I had friends all across the country meet our family there for an incredible three days. This year I was so excited that Mina would get to be a part of it but I was so bent out of shape over the logistics. Paige and I were even piecing together scenarios where she could drive up down to the GA-FLA border and my parents could pick us up if I was in fact not medically cleared or not well enough to drive.
The next afternoon we had the appointment with my radiation oncologist. When they call you back, check your vitals, and then always ask you, “What’s your height?” I’ve started saying 6’4″. For this appointment I said 7’3″. It gets a chuckle and then I tell them I’m 5’5″. Some men try to exaggerate their height while some women under-report their true weight (nurses have told me when I fess up). My radiation oncologist was happy to see me. He suggested the cyberknife procedure again to take care of the new lesion on the left side of my brain but the decision was up to us. I explained, “I thought we’d have to convince you.” We were even able to walk right in for my mask fitting for the cyberknife procedure, immediately after our follow-up. He was fine with my driving down to Florida provided I took breaks and listened to my body.
He was not very concerned about that report aspects dealing with the edema or the cavity collapse. And he mentioned that with melanoma usually when another lesion in the brain turns up it’s typically many, not just one. Like a “flowering or a blooming” of them, so that there was just one to deal with was good. And the chances of any other metasis in the rest of my body (neck-down) were very small. He explained that at this point I was on such a low dose of dexamthasone that is wasn’t really affecting any brain swelling anyway so that finding didn’t surprise him. Near the end of our talk Paige said, “We were hoping for a home run MRI,” And he responded, “And it almost was!” If not for the new lesion, he would’ve been very pleased with the results. So I got fitted for my new mask and made an appointment for another cyberknife procedure (device pictured below) for a date after my return from Florida (mid-June). We left getting so much better.
We’re not out of the woods yet– but lesson learned. Don’t read the “raw” report, wait on the face-to-face follow up with the doctor.
The next day I had a virtual meeting with my oncologist. like the two others, he was fine with the travel as long as I took breaks and listened to my body. He shared the same positive outlook as my radiation oncologist and thought a metasis to my body was unlikely and didn’t see any need to move of my next PET scan currently scheduled for the end of June. Again, we felt much better even though we were still nervous about that PET scan and the new lesion.
[It’s been a while since I start writing this post. I didn’t think I needed to take the summer off but it turns out, I did! I did have the late June PET scan. And thankfully, it was totally clear. Mysteriously, there was no “raw” report sent to my phone– which had me playing games inside my own head. Next up is my next MRI (Sept 15th, one year to the day I had my seizure, follow-up appointment the next day 9/16) which will tell me what’s going on with my brain and if the cyberknife procedure was effective. We’re still ringing our hands over this one. It doesn’t help that my son contracted RSV and it passed through our whole family this week. It seems to like me a lot. I’m through the worst but the congestion and headaches won’t seem to go away. ]
How did we get here? (A recap before Tuesday’s big MRI)
Update 5/30/21
The effects of cortisol steroids especially over long periods of time (for me almost 2 years) are real. (These are not anabolic steroids, which you’d associate with athletes and recovery time– so the jokes about getting ripped or “‘roid rage” are not especially apt or helpful.) There is a facebook support group called Adrenal Disease Support Group— I recommend it. If the link doesn’t work, just type it in to facebook and you’ll find it.
A look back at where this started.
I am closing in on the end of my taper (I think– fingers crossed).
Last Monday (5/17) I tapered down to 1mg of dexamthasone in the AM per day. But the dex is still reeking havoc on my body. I am still dealing with weight gain– no matter what food choices or exercise choices I made I still seem to gain lots of weight. There are parts of my body that are still subject to strange swelling thanks to the dex (like my eyelids which have small bumps on them that can be seen when I close my eyes). On the positive side I am sleeping through the night, which feels good. I’ve found that CBD really helps me with this. So hopefully the reduction to 1mg per day in the AM only continues to help, controls the weight, and swelling issues.
This got me thinking about where it all started. Recap below.
September 15th – seizure, hospital for 3 nights. Switched up from 3mg of prednisone to dexamathasone. I was two months away from being off of cortisol steroids entirely. Life was good on only 3 mg of prednisone, despite it being a cortisol steroid. The switch was because dexamathasone is for brain swelling, which is what was happening to me and caused the seizure.
I did not have a good experience introducing my body to dexamathasone– mood swings and insomnia were the worst part of it. My kids and wife paid the price by dealing with my emotional volatility, fatigue caused by the insomnia, and the general toll on my body. I never slept well through any of this. I was prescribed restoril to help with the insomnia and as soon as you’re prescribed a sleep aid, the doctors write your sleep problems off like a chemical balance equation. I could fall asleep easily but I would always wake up at 3am, sometimes 1 or 2am depending on how early I went to bed, and could never get back to sleep. The doctors thought it was anxiety and initially wrote me off but when I explained the issue was going back to sleep they switched me up from restoril to valium, that was a moderate improvement. It wouldn’t be until I used valium and CBD, with reduced steroid in-take (down to 1mg in May), that I would actually sleep through the night…so about 8 months of sleepless nights.
(safety note: if you’re having trouble sleeping, consult doctors before combing medications like restoril and valium with other meds– even over the counter ones— fortunately, valium and CBD hit different receptors so they’re safe to use together. But you don’t want to relax your body so much that it forgets to breathe!)
I was routinely waking up at 3am. And unable to return to sleep. Out of the hospital I started at 4mg of dex 4 times a day for 4 days, then 3mg of dex 3 times a day for 3 days, then 2mg a day for 2 days. Eventually, I was able to convince the docs to get me down to a 0.5mg per day in the AM only due to my lack of sleep and quality of life issues.
It’s my belief that this low dosage lead to what was to happen in November and December.
In November I started experiencing headaches again shortly after Thanksgiving (and my handwriting started to look terrible). In early December (December 9th-11th, Christmas 2020 was rough), it got so bad that the headaches felt worse than the first tumor / hospital stay which led to my first brain surgery. I was out of it. My head felt like a kick drum and I knew I looked terrible. My eyes were staring through things, not focusing. I could tell that my brain was pressing against my skull– it’s not a good feeling. I also lost feeling and was unable to use the left side of my body (I am left handed.) I was in the hospital from December 9th-December 11th. When I was released I was put on dex for 4mg 4 times a day (every 6 hours). I was released in time to go to a referral surgery consult appointment at the Wake Forest Baptist Hospital for a procedure that would cauterize the dead brain tissue and have a 2-day recovery time. We learned that I was not a candidate for the procedure because my dead brain tissue was around a removed tumor, not in a new, previously untouched area. (The cauterizing lasers have to go in and burn around the area, which can be done and limited in a new area but not in a previously operated area where a tumor has already been removed.) I had to “premedicate” with zofran (an anti-nausea med one hour before taking my dex hand) I got into a routine of taking it at 7am, 3pm, 9pm, and waking up to take it at 1am (after premedicating 1 hour earlier). Before the hospital stay I couldn’t eve hold down any medicine. This lasted for 4 days. Even though our trip to Wake Forest was a disappointment, I returned home without any incidents and started to regain feeling in the left side of my body. It took two weeks for me to regain total control– I was afraid that I’d lost my left-side forever. (I remember sitting down at my guitar to play “Blackbird” (a go-to song for many guitar players) and being unable to press down on the frets and strings. I couldn’t play guitar anymore. It broke my own heart.
Then 3mg 3 times a day for 3 days (7am, 3pm, and 9pm), I didn’t have to premedicate with zofran at this point. Then 2mg for 2 days (7am and 7pm).
After learning that we would have to have another craniotomy, physically open up my head again and go-in, and remove the dead brain tissue, I was put back up to 16mg per day (4mg 4 times a day / every 6 hours) to prepare my brain and body for the future surgery. The drug’s effects on my emotions made it a very difficult Christmas. After much frantic coordination and preparation I was able to have my surgery Tuesday December 29th (before the end of the year, which was important to the hospital system for insurance reasons, my procedure was considered an emergency surgery) it would have to take place here in Greenville at the “COVID” hospital for Bon Secours (downtown). As I’ve blogged about previously the experience was very rough. The ICU was full so they converted the post-op room into a temp ICU and that’s where I had to stay and be monitored for a night. It was terrible. The COVID cases were increasing so rapidly that my doctor let me return home a day early to avoid any possible exposure (he left the decision up to me but I took him up on it) So I was home 48 hours after major brain surgery.
Once home, I started back on the dex and started a similar taper to my first after-hospital taper in early Dec. I was put back up to 16mg per day (4mg 4 times a day / every 6 hours). Then 3mg 3 times a day for 3 days (7am, 3pm, and 9pm). Then 2mg for 2 days (7am and 7pm). I never slept well through any of this. I will living pill-to-pill just looking for fill those hours with something. I was on severe restrictions– physically told not to lift anything over 5 lbs. And not to take in anything more than 5 consecutive minutes of screen time. I couldn’t take proper showers or get my hair wet due to the wound care. So there was a lot of resting and listening to audio. A lot of LEGO. I would scheduled phone calls with friends to try to fill that time with talk until I had to take my last pill and head to bed to try to sleep. Thank you friends for talking with me. At one follow-up appointment (1/20) I was reduced to 1mg per day until the next appointment (my body was not going to allow this). My doctor got concerned with the lack of progress with my head wound healing which he blamed on having to use the same incision site and the effects of the dex delaying the proper healing. I couldn’t do much with the kids, which after Christmas with small children, is brutal. I miss (and still do) the ability to pick them up and wrestle with him. There was a solid two years when I would pick up Mina in my arms and take her downstairs (still asleep and let her rest on the couch while I made breakfast for her). I haven’t been able to do that with Will. I can’t put Will on my shoulders or give him a piggy back ride– and that’s heartbreaking.
The dex taper regimen was fine until I failed a neuro test at a surgery / wound-care follow-up appointment (2/1/21). When asked to close my eyes and raise my arms above my head I couldn’t raise my left arm to the same level as my right. I had to get a rushed MRI to see what was going on. My brain was swelling again. See the 2/19/21 update below.
After that MRI, I had a series of appointments with my team of doctors– my oncologist, my radiation oncologist, and my neurosurgeon. This was a frustrating time because of a lot of mixed messaging (and we wanted them working together and to communicate with one another regarding my situation). My radiation oncologist said, “Everything’s on the table,” including more surgery and dex. My neurosurgeon had to defer a lot of questions because as he would say, he’s more into the “crannies” (short for craniotomies) rather than the drug / drug management side of things.
So it was my oncologist who would come up with a plan and manage my drug situation to control my brain swelling and ideally get me off of dexamethasone. When I had trouble getting off of prednisone he put me on what he referred to as the “rheumatoid taper” (reducing by 1mg of prednisone each month. This is extremely slow compared to most tapers). So this taper would be extremely slow as well. Basically I would reduce by 2mg each week and see how things would go.
There is a rough equivalency of 1mg of dex = 5mg of prednisone. So even at 1mg of dex I would be at the same place as I was when I was taking 5mg of prednisone, which wasn’t too bad– by that point I was sleeping through the night and feeling okay. His plan looked like this:
- March 4mg of dex every 6 hrs (16mg per day)
- April 12th- 4mg of dex, 2 in the AM, 2 in the PM (4mg per day)
- April 26th- 2mg of dexin AM only (2mg per day)
- May 3rd- 1.5mg of dex in AM only (1.5 mg per day)
- May 17th- 1mg of dex in AM only (1mg per day) and “remain there.”
Each of these two week transitions came with challenges. While I thought that the first day or week of the taper would be the most difficult, it would always be the 2nd week of the taper that would be hard (probably my body finally running through what stockpiles were left in it). And while mornings were good (and still are)– late afternoons and evenings would be when I’d hit my wall. I still hit my wall in the evenings. By 10pm I am done and falling asleep.
So I am at 1mg of dex per day in the AM. I have found a way to get sleep through CBD and prescription Valium. While I’m not thrilled to be on a benzo– let’s go one battle at a time here and I think sleep / recovery is a big part on my path to healing.
So now I wait until 2:45 on Tuesday for my MRI. I have follow-up appointments on Wednesday with my neurologist and then on Thursday with my radiation oncologist so there will definitely be a lot of sifting through the results.
What’s curious is how much better my mornings are compared to the late afternoon / evenings. I feel so good in the mornings. My MRI is at 2:45pm, right about when I start fading. I’m not sure if it’s stress, the toll of the day, or the 1mg of dex running out. But ideally I’d like my scan to come back with a nice, pretty brain with a straight line separating the two halves and then be allowed to go down to zero mg (or have a plan to get there). At worst, I think I would have to increase my intake and require more surgery if the necrosis has spread (or is spreading). My head generally feels fine although sometimes I do get headaches, so if I watch to much TV with lots of commercials (commercials are the worst) I will start to get a little nauseous / queasy. Which hopefully means nothing. I felt similar things last June. The older I get the more my body reacts strangely to changes in seasons and weather. When I got all concerned last year and my scan came back fine and I expressed extreme surprise to my radiation oncologist, who responded with “sometimes a headache is just a headache.” Sometimes it’s hard to know.
My Journey – Updated (Updated 4/23/21)
I’ve been angry
Glen Philips, Back Up on My Feet, Abulum
And I have strayed
I said words i never thought that I could say
You were sadly sweet
Like an old Wilco song
But I’ll be back up on my feet before
too long
You could say you wanted me
If I said it first
Words rang hollow
And the emptiness became a thirst
Now I could drink those words
And they would make me strong
I’d be back up on my feet before too long
I’d be back up on my feet before too long
UPDATE: 4/23/21
I am in the throes of it. This week I have reduced my cortisol steroid intake by half– this is a big test for my body. The question is will my body take over the healing process and keep my brain on track or will it let my brain swell and show that by letting me lose some physical abilities and/or cognitive functions? Fortunately the taper (so far– day 5 here) is going okay.
Cortisol steroids come with harsh side effects. The weigh gain, mood swings, and insomnia are very difficult to deal with. I typically wake up between 3-4am (and that’s with me taking medication for sleep to counter the steroids). I have written down as one of my goals to sleep until 6:45am. It hasn’t happened yet.
Today is the two year anniversary of my brain surgery to remove my tumor. It seemed fitting to post a blog on this date. I still consider it my “death.” I am not the same. Something I haven’t shared before: my surgeon asked me if I wanted any particular music playing during the surgery– I deferred to him and whatever would put him in the zone. Afterwards, he told me that the Last of the Mohicans soundtrack was one of the choices and that my brain “lit up” when the song Promontory came on. I have listened to the song Promontory nearly everyday since then. I don’t know what “lit up” really means. But I know the surgery was very successful. My tumor was entirely removed– not just biopsied. My recovery was not easy but after that experience (saying goodbye to my family) I rode a wave of dopamine and had many of what I called, “epiphanies of happiness.” I had two mystical experiences. I ate breakfast outside every morning and listened to audio from my spiritual heroes. I completely overhauled my diet and became a “plant-based” eater. I fought cancer and won. I began a daily meditation practice, which I still keep up with. I started tai chi– which I still practice (and am enrolled in a course to become an instructor). I journaled more (which I still do in various forms). I started doing the things “I always meant to do.”
There is still a lot out there “to do” (thanks a lot COVID). These include (but not limited to):
getting an ornate tattoo on one of my arms
taking my father and Paige to visit the Vatican
going on a Disney cruise with the kids and grandparents (cruises might be RIP though now, thanks COVID)
completing more distance running and spartan races (I would specifically like to complete a marathon before my body is too worn down for it)
more trips with Paige
completing all of the house construction projects that have always been “someday”
more outdoor trips / experiences / camping / glamping with Mina and WillMore stargazing
See the international space station in the sky, before it ceases operations (possibly in 2024), in the sky with Will and Mina (accomplished this one thanks to the ISS app, I paid the extra $2 for the full version which allows you to see other planets and comets– worth it)
Travel to Israel , Greece, and Egypt.
While it’s been two years and I’m still in a fight for a what’s considered a more “typical” life and a return to work– I am grateful these last two years, even though one was the COVID year. I am still cancer free. I can still function. I can still read and write. I am still a father and husband. I am still learning about simply “being” and living the the present.
Grace and peace to you. Thanks for reading.
- getting an ornate tattoo on one of my arms.
- taking my father and Paige to visit the Vatican
- going on a Disney cruise with the kids and grandparents (cruises might be RIP though now, thanks COVID)
- completing more distance running and spartan races (I would specifically like to complete a marathon before my body is too worn down for it)
- completing all of the house construction projects that have always been “someday”
- more outdoor trips / experiences / camping / glamping with Mina and Will more stargazing
- See the international space station in the sky, before it ceases operations (possibly in 2024), in the sky with Will and Mina (accomplished this one thanks to the ISS app, I paid the extra $2 for the full version which allows you to see other planets and comets– worth it)
- Travel to Israel , Greece, and Egypt
While it’s been two years and I’m still in a fight for a what’s considered a more “typical” life and a return to work– I am grateful these last two years, even though one was the COVID year. I am still cancer free. I can still function. I can still read and write. I am still a father and husband. I am still learning about simply “being” and living the the present.
Grace and peace to you. Thanks for reading.
UPDATE 3/19/21
Wow. Exactly one month since my last health update.
Well, I’ve had a series of good appointments- I’m happy to report. At the beginning of the month I met with my oncologist and neurosurgeon. My oncologist had a handle on my dexamthasone situation and it was much less of a guessing game for him, which is a relief for me and Paige. We know have a schedule of how to taper off this stuff- it’s slow but it’s something and I’m a visual person, so I like looking at the calendar and knowing when to expect something. All that said, if my body can’t take the change I’m back to the same dosage. Let me explain why now.
Because we had a good appointment with my radiation oncologist yesterday. I had an MRI this past Tuesday. We were really hoping it would at least show moderate improvement since February was such a mess. Here you go. Bad one first.
So the question remains is it the dexamthasone that’s really doing this– or is my body responding and healing itself. We’re hoping my body is finally healing itself after some distance from the surgery (which was now 2 months ago).
I’m still on a good bit of dexamthasone but the goal is to get down to 2mg in the AM. Every week I’ll get rid of 2MG and see how my body is responding. So far, so good. I’ve already kicked the night dexamthasone but I still have trouble sleeping. I take 4MG at 3pm and I think that stays with me a long time.
The other good appointment I had at the beginning of the month was with my neurosurgeon. My wound is looking very good. The large area of concern had scabbed over very well and he could tell that when the scab came off I’d be in a good spot. So I can wear loose hats, I can go swimming this summer with the kids, I can ride a bike with a helmet on– as long as I’m not trying inverted handstand push-ups I should be okay.
And as of March 15th (6 months since my seizure) I can drive. I still can’t drive solo but I’ve been able to have a couple of trips with Paige as my supervisor and it’s all gone well. I think I need a few more trips and I’ll be ready for small solo trips like the grocery story. And then go from there.
The dexamthasone still drives me crazy. The weight gain and proximity muscle weakness (legs and arms) are very difficult to deal with. But it’s all cortisol steroid based…there’s very little I can really do until I just get off of them. (see some pics of me on instagram if you want to see the weight gain from cortisol steroids).
Plus, Paige and I got our first vaccine shots last Thursday! Our second shots are scheduled for 4/1…so by 4/15 we’ll have a level of freedom we’re trying to mentally prepare for…All good news!
UPDATE 2/19/21
So if you missed my disappointing session with my neurologist last month, check the blog post here (which was more of a health update).
We had an appointment with my radiation oncologist yesterday. The big take away from all of this is: they just don’t know. Previously, we’d been told to hold to the dexamthasone and most folks see significant progress in two months. And while we’re still doing that, there are no promises that two months will be the end of the swelling and the issues it may cause(could be six months or a year, who knows?). For now were are being given some freedom to experiment with my dexamthasone dosage and see where that takes me. MRIs will help us determine where I am with the swelling and if further and more invasive procedures are needed– everything is on the table, including the previously looked-into auto-LITT and more surgery. But we won’t know until time progresses, we tinker with this dosage and really examine the scans.
It’s strange to walk this tightrope. We’re so used to the doctors’ telling us exactly what to do, what to take, and when to take it. I’ve been living the past month on a strict pill schedule which has shown very good improvement (mentally mostly) but now we have the freedom to alter it. The last thing we want to do is mess it up so that it means I lose mental or physical functions again. We’re starting very slow– like with the prednisone a year ago. Right now we’re just changing my dosage at night, which combined with the sleeping aid I’m taking should be a smooth transition. Thankfully, I’m am getting sleep. At least until about 4 or 4:15. I’m able to get back to sleep until my 6am pill so that’s good. Then the day starts with the kids.
My head would is still healing very slowly, the dexamthasone and the incision site are to blame. However, I was able to buzz a good bit of my hair with a #5 clipper (thanks Paige!) and that feels very good. I still can’t wash or wet the top of my head, thanks for a particularly slow spot that’s taking it’s time to heal. Hopefully my early March appointment with my neurosurgeon will give me the clearance I need to start cleaning in that area.
I am gaining some physical strength back and can assist with household duties with supervision– and that feels very good. I’m finding it’s all about patience and listening– especially to Paige. I can’t push myself too much– what’s the point? If I want to be high functioning again (mentally and physically) I really need to take this slowly.
Folks ask me how I’m doing and all I can say it, “Good days and bad days.” That about sums it up. We were really hoping this second craniotomy would be the silver bullet and thought that the recovery would be the hard part but we’re finding that despite the good news of no cancer recurrence and clearing the dead brain tissue out to be “clean as a whistle,” there are other factors that are really complicating things.
Paige is the engine of the household. Without her driving me to appointments, working, running errands, getting groceries– we’d be finished.
My seizure was five months ago. Fingers-crossed one more month until I can drive again.
UPDATE 10/6/20
It’s been a while since these updates. My recent developments has me revisiting this update page.
The seizure is documented on my blog post. Since the seizure I’ve had follow-up appointments and started a regimen of drugs that’s wreaking havoc on my body. It’s similar to when I started the prednisone regimen a year ago– but this time it’s different, in some ways worse.
The cause of all of this is thought to be an effect of the radiation treatment I received to the right frontal-lobe brain cavity after my brain surgery. The radiation was necessary to kill any remaining cancer cells. (Cancer reoccurance is about 50% if the radiation treatment is avoided.) Unfortunately, the treatment can cause dead brain tissue to collect and swell overtime.
This is what my radiation oncologist is calling a text-book case of necrosis. The plan is to monitor it to see what happens. In three months I’ll get another MRI and depending on the results I may need another procedure on my brain. There is something called last interstitial thermal therapy (LITT) which combines the use of an MRI machine and brain surgery. It would implant a laser catheter into my brain to heat up and destroy the dead brain tissue. Depending on my December MRI, I may need this procedure. On the other hand, it’s possible my next MRI doesn’t show anything significant happening and it’s still something that’s just monitored routinely.
Until then I’m on a mix of drugs to help abate the brain swelling and prevent the necrosis from developing further. I still hadn’t officially tapered off of the prednisone (for the immunotherapy induced hepatitis) but in the the hospital they transitioned me to dexamthasone, another strong steroid. Right now I’m on a 4mg in the morning. I’m jittery most of the day and can feel my heart pounding. I’ve been able to upgrade to half-caf coffee in the mornings which is very nice.
I also have to take a drug called trental twice a day to control the necrosis. I’ve discovered trental gives me increased heart rate and makes it difficult for me to maintain deep sleep. After some back-and-forth about timing I can take it at 7am and 3pm, and that seems to help a bit.
The worst part is the insomnia. It’s like starting steroids over again. Last week I was waking up anywhere between 1:30-3:30am. The lack of sleep was causing a lot of bad mental side effects– I’ve been irritable, impatient, and finding joy in nothing. Since the tweaks I’ve been able to achieve some deeper sleep and my wake up time seems to be between 4:30-5:30am which allows me to be more of myself. This Friday I get to transition to just 2mg of dexamthasone in the morning and I really hope that allows me to sleep until 6-7am.
I can’t drive for six months and that’s been the least of the struggle. None of the kids have to go anywhere for school because of the pandemic. I miss taking them to parks and outdoor activities, but we go out daily walks with our dog Ozzie, and I look forward to those.
UPDATE 11/14/19
Today’s update is the featured blog post.
UPDATE 11/7/19:
This week has been pretty good.
I’m down to 10mg of steroids and taper to my last dosage of 5mg on Friday. I’ll be at ZERO on November 15th. Even then, I think it’ll take a couple more days to really get out of my system.
But 10mg is okay. I’m getting deep sleep. I need an alarm clock. I can’t feel my heart pounding at night in bed, and my hands aren’t shaky. It feels good. Feels like I’m approaching the feeling I had during the summer.
I had an MRI on Tuesday. It was my best meditation session in an MRI to date. I don’t know the results yet but I think they would call me if it was very bad. So, no news is good news.
I had a body scan with my dermatologist today. Nothing to report. Next scan in 6 months.
I’ve got a PET scan at the end of the month.
At the end of this month, I’ll know a lot, but right now…Life feels like it’s rolling along. In a very good way.
I’m still trying to piece together what this Life is now. I’m still concerned about paying bills, and what the heck I’ll do with my future, and getting Will through one-more-year of daycare tuition. But these all feel familiar, except this time I have these incredible spiritual tools at my disposal.
Daily meditation is a must for me, even if it’s right before I go to bed. I’ve adjusted to the plant-based diet, even when I had to overhaul it. I’m used to no alcohol and no desserts or sweets. I have my nightly tea. These are new routines I can add to the familiar ones.
I wish I could tell my pre-kids self about these tools and how great they are. And how they might possibly save me from something potentially very tragic. These new parts of my life aren’t just a luxury– it’s a matter of life and death.
Oh, and I had the honor of officiating a wedding last Saturday. Yes, I am now one of those sketchy internet ministers! But it’s all good, I ran it by my pastors first and did my homework. It was a real honor to perform this marriage ceremony for Diane and Luke, and to be a part of the whole event.
Diane is amazing, talented, and warm. We used to work together, first at Fluor and then at Alta. When she started at Fluor she was LDR (long distance relationship– yes, I realize I just negated any saved effort by spelling out the abbreviation, but whatevs) with Luke (in Detroit). Luke moved down to Greenville and got his masters in planning from Clemson. Diane and Luke both helped me and my family during my time in the hospital and my recovery at home during the summer. This past June, they moved to start their new home in Atlanta. Now they’re happily married and embarking on this great adventure.
It was so great to officiate their wedding! They are in New Zealand right now, having a world of a good time.
UPDATE 10/31/19:
Happy Halloween, everyone.
I think I can see the light at the end of the tunnel.
Maybe 20mg is an inflection point for steroids.
Now I have good and bad days, not just bad days. For the first time, I’ve needed an alarm clock this week. I’m getting sleep and feeling rested.
I can feel the steroids come on a little bit later in the afternoon now. Unfortunately, this coincides with picking up kids and prepping dinner, but it’s a small frustration to pay for actually getting sleep.
I had a good appointment with my oncologist this week. My labs look good. I can continue the taper down. I can’t go from 10mg (which starts tomorrow) to 0. I will have to go from 10mg to 5mg to 0, so that adds one more week, which isn’t too bad.
Also my blood sugar levels look good, so I can stop wringing my hands over that. But I’ve discovered I still need that protein boost from Just Egg and Beyond Meat to reduce my head pain.
I have a MRI scan next week. That’ll look at my head and brain to ensure everything’s okay. I don’t have a follow-up with my radiation oncologist to discuss results until the following week- so I won’t be able to update you all next week with results.
This starts a rush of seasonal check-ups. It appears that I’m in the cancer survivor stage that requires a lot of seasonal attention but is relatively low maintenance for the periods between (except for this stupid hepatitis / steroid set back). It sounds manageable but Mondays and Tuesdays (the days of the week I don’t report to the office) are peppered with appointments at various times and places across town. I’m not complaining. Well, not complaining yet.
Also, Halloween is exhausting with kids. We had the church costume contest and fun-time last night. We dressed up as our pastors (Mina’s idea). We tried to convince Will to be the Bible but the only thing that appealed to him was a rainbow (sign of God’s love / covenant). Tonight we have actual Halloween which involves different costumes. The kids, who have controlled the family themes from the beginning, have decided to go different ways— so no actually Halloween Catoe family theme. We’ll be happy just to get them dressed up to go out and get some candy, and come back only a little wet. Tonight will be fun, but Paige and I are looking forward to All Saints’ Day.
[Check the home page for a new menu. In case you didn’t see I post blog pieces on johncatoe.com. Fixed for mobile, too. Thanks for the help WordPress!]
UPDATE 10/24/19:
These rough weeks keep piling up.
It’s possible that I just had a bad night / morning last night. Will woke me up at 3:45am and decided not to go back to sleep.
I did get one night of solid sleep this past Saturday. I slept til 6am. I feel like that’s an accomplishment. I still don’t need an alarm clock yet, but that’s a start.
I would like to ramp stuff up– physical activities, work, what-not, but I really feel the steroids start to take affect around noon. And then my body is just a shaky mess.
One thing I’ve noticed to add to the list of terrible things that happen when you’re on steroids: loss of coordination. I’ve always been pretty well coordinated, not clumsy. But with steroids, my hands shake, I drop stuff, or even run into things sometimes. It triggers frustration, which is likely to trigger a headache, and that’s more source of paranoia / mania.
I’m not happy that I’m such a downer on these updates lately. Day-to-day I am staying positive. But when you take stock of an entire week, you can really see that it was very tough.
I meet with my doctor next Tuesday. I hope he will confirm that I’ll be done and off of the steroids in early-mid November.
Oh, I did try the Impossible Burger and it was good. My vegan brother, Jared, and his family joined us. It was a celebration of my September PET scan (which feels like ages ago). Jared introduced me to a plant-based diet which became a critical part of my self-treatment. Thanks Jared and the whole Davis family! We found a nice restaurant downtown that serves them. Take that Burger King!
UPDATE: 10/17/19
The rollercoaster continues.
This week I returned to work on a limited basis.
I also had to navigate through a maze of disability benefits because they forgot to process my deposit. It’s such a long, convoluted, stupid story.
I think I’ve righted the ship- which really shouldn’t be up to a person still recovering from a significant brain injury. Dealing with the entire bureaucracy of it has given me more head pain in the last two days than I’ve felt all month. This is not advancing my healing, it’s robbing it.
Also, one of my credit card numbers was stolen so they had to close it down and change the number. Which caused all of my auto-pay bills to be declined. It was not pleasant reviewing statements and then calling my power company, water company, non-profits, etc.
So yeah. Not ideal.
I can’t remember the last time Paige and I sat down for dinner and said, “I had a good day today,” and the other said, “Me too.”
I’m trying to remain grounded through it all but the steroids make it difficult.
I’ve slept in till 5:45 or 6am twice but I am still waking up at 4am during the week.
The steroids really come on around noon so I am trying to put in my office time in the mornings now.
Meditations help but sometimes open me up too much. Instead of feeling grounded, I’ll feel like I’m floating in the clouds. It does not take long for that feeling to wear off and the crash of cold, hard reality to hit.
We are counting the days when I am finally finished with these cursed steroids.
UPDATE: 10/10/19
It’s a rollercoaster. This past weekend was rough. The past few days have been very good. I’ve started to refer to steroids as “bipolar in a pill.”
I find issues to latch on to. This past weekend was my blood sugar level. The last lab reading had an insanely high glucose level. I became obsessive and starting researching and calling friends. I questioned everything about my diet. I have avoided sweets, desserts, and nearly anything with refined sugars. But my levels were still sky-high.
My doctor buddy recommended I stay away from pasta, breads, fruits, heavy carbs. Basically, that’s 90% of the plant-based diet I’ve grown accustomed to. He recommended I focus on protein and veggies. Always good advice, but it turned my world upside down (the mania didn’t help me cope). I couldn’t rely on the old standards and use the excuse, “I’m hungry because of steroids.” How could I do this and still stay plant-based? I had to rebuild my diet again. I’m going to be on steroids until early November.
I found my answer. Beyond Meat and Just Egg (formerly called Beyond Egg). I starting to buy a few of each. Just Egg is a plant-based egg replacement. It cooks just like an egg and has the same protein that the equivalent amount of egg would. It doesn’t have the flavor of a real egg but you can still put hot sauce on it and it tastes good. I’ve started scrambling half a bottle of Just Egg in the morning, mixing it with a handful of spinach and salsa in a bowl. Yum.
Then for dinner and some lunches I’ve started incorporating Beyond Meat. I buy the bulk 16oz. frozen packs (if you can find them. Many places sell out weekly). I defrost (in microwave if pressed for time), ground and brown, and put it into whatever’s on the table for dinner (like Taco Tuesday). I am a big fan of Beyond Meat. I think it tastes very good.
I’ve got to tell you, the augmentation of my diet to include high protein content has me feeling very good. I get deep sleep (well, 5 hours. I still wake up at 4am consistently). I feel less head pain. I can handle stress better and I’m not as erratic. I can watch the mania in my head instead of acting it out around my family.
We learned a lot on the Duke trip. I’ll be brief.
I am finished with immunotherapy.
Simply put, the risk is not worth the reward. My body has already responded in a manner that puts my in a very small percentage of remarkable responses. It’s not worth introducing more potential toxicity to my body when my last scan was so good.
There is potential down the road to return to it, if need be. But let’s not borrow trouble.
Treatment is…done. If I could just get off these cursed steroids, I think I can find my feet again.
UPDATE: 10/3/19
Things are getting better. Or at least more manageable.
I had an appointment on Tuesday to check my labs and follow-up with my oncologist. My labs look good. The hepitatius thing is basically over. I still have to continue my steroid taper though. It will last through the month of October. But lower the dosage goes, the better I feel. I am tapering down 10mg a week. Every Friday is a celebration, welcoming the new lower dosage.
I also got prescribed a sleep-aid. The lack of sleep has caused me a lot of fatigue, which is what I think is causing the slight head paining I’m feeling occasionally. When you’re body doesn’t get deep sleep it finds ways of telling you- even if it scares you a bit. The past two nights I’ve got solid, deep sleep. Sure, I’m still waiting up at 5am without an alarm clock, but I can feel the deep sleep healing me.
Paige is getting better, too. Diet has been a big part of the solution. We’ve both had to give up coffee (for now), but we’ve discovered the magic of morning green smoothies. We pack a ton of spinach together with oat milk, pea milk (ripple), banana, cinnamon, vanilla bean extract, and some flax seed. Blend it until smooth, and it’s instant iron and greens in your system. Paige found that dairy will block your absorption of iron, so non-dairy milks have been key.
We are heading to Durham tonight for an important consult with Duke Cancer Center tomorrow. They will take my labs, review my data, and make a recommendation whether I can continue maintenance immunotherapy of not. We think we are going to learn a lot. I’m looking forward to it.
We are lucky to have an amazing support system in place for the kids while we have to head out-of-town for this critical appointment. Thank you Ms. Haley, Ms. Byrd, and everyone that’s reached out offering up support. You are part of my healing. I am deeply grateful for you all.
BY THE WAY…
Did you know that the Senate Appropriations Committee is including $20 million for Department of Defense funded melanoma research? This is double the 2019 amount of $10 million.
The Melanoma Research Foundation and the Melanoma Research Alliance have issued press statements of commendation for their action.
Some eye-opening facts:
“melanoma is the most significant cancer to affect the active duty military population.”
“…Melanoma is one of the most frequently diagnosed cancers among male and female service members, and those rates only increase in members age 50 and beyond,” said Kyleigh LiPira, MBA, Chief Executive Officer of the MRF
UPDATE: 9/26/19
It’s been a rough week.
Most of my issues are in the main blog post for today, so I’ll go straight to Paige.
Paige hasn’t been feeling well since last week. There was a viral aspect that came-and-went (for the most part) but she still felt like she was about to pass out behind the wheel. So driving herself became impossible. I’ve been Mr. Uber this week (and I’m glad to do it) but it does drain me, especially because of steroid regiment and lack of deep sleep. I know it’s not easy for Paige to become helpless, either.
We’ve had a series of doctor appointments this week. We are coming closer to the issue. It’s multi-factorial, but it involves diet, previous medications she hasn’t been on, and how the body reacts to extreme stress and trauma.
The diet part involves some of my veganism, unfortunately. Because I’ve gone vegan, we really don’t buy any meat or poultry. I also try my best never to have any added-sugar, so no desserts or sweets. Paige went along for this during the summer, too. So we really didn’t buy any sweets or desserts (for us— the kids, that’s different). But then the fall starts up and we’re getting into the school routine and desserts and sweets become a nice way to relax. I’ve stayed away— cancer loves sugar, so sugar is out of the question for me. But I don’t care if anyone else wants yummy treats. So eating sugary treats with a lack of meat or protein behind it can cause a problem. I’m not a nutritionist, but you need something heavy in your body to balance out the sugars if your eating sweets. Protein and iron are big here. Tuesday, Paige had a burger at our former-favorite fancy-BBQ joint and immediately felt better. She had a burger yesterday and felt better. She’s staying away from sweets, for the moment. We’re planning out diet strategies to get her more iron and protein. It’s not difficult, we just need to be very intentional now.
I don’t want to go too much into it, because it’s private, and it’s not Paige’s blog (although I hear a lot of people want a Paige-blog), but there was a medication she was on that she stopped, under doctor’s advisement. During the appointments this week, it became apparent she should’ve never stopped that medication. She started back up on it this morning.
Then, there’s the last aspect of how the body processes stress and reaction to trauma. I am a walking billboard for how great meditation is. I am always talking about it. But I never mean to force it on anyone, and you can’t. That defeats the entire point. You can’t physically force someone to open up spiritually. But this week has had us discussing various forms of mental health and alternative medicine. I don’t know what will end up sticking, but therapy, acupuncture, and meditation have all been put on the table.
I am very excited to take my last week’s dose of steroids tonight. I start a lower dose tomorrow and only have to take it in the morning. Hopefully, this will help me sleep at night, and keep my heart from pounding in my chest at 4am in the morning.
I went in for labs on Tuesday to see how the steroids are affecting my liver function. I got nervous when I didn’t get a call back that day. I got a call Wednesday afternoon. My liver numbers look great! This means the taper can continue (and continue to go DOWN). We’re not sure about resuming my maintenance immunotherapy, but we’re headed to Duke next Friday to get an opinion about that. There is sunlight at the end of the tunnel.
UPDATE: 9/19/19
Okay. Well, it turns out I have immunotherapy induced hepatitis.
I woke up sometime after 5am last Friday, and put Paige’s hand on my forehead. This time I did not wake up with energy and feeling hungry. I woke up fevered and fatigued. Paige immediately went into go-mode, getting the kids out the door, while I collapsed in a different room that felt cooler to me.
I made an appointment with my oncologist. They tested my blood and saw me that afternoon. They were glad I came in. It wasn’t anything viral. My liver numbers where showing a steep decline. I had immunotherapy induced hepatitis.
Immunotherapy super charges your immune system— which is good. But your newly charged immune system can also attack good tissue sometimes as well. Auto-immune responses of some sort happen in over 50% of immunotherapy treatments.
The path forward is a regiment of steroids, designed to taper off slowly until my liver numbers get back up to normal naturally. Until then, no work. No driving. Take it very easy.
I started taking the steroids Friday night, and within hours starting feeling like myself.
Aunt Amy and family (also The Best) took Mina and Will for the weekend, and Paige oversaw my recovery. I slowly gained back appetite, and food started to taste great again! My energy level improved. I had a lab appointment on Sunday, and it show my numbers were trending in the right direction. I could even make a quick drive to the store if I needed to.
The difference between those 2 days were night-and-day. Friday I was curled into the fetal position waiting on my doctor to see me. Sunday I was cruising down the hallway, bragging about how good my hair was looking.
So, it feels good to feel good again. The steroids are definitely effective. We need to taper them off and monitor my levels. This is a borderline reaction which might mean I have to go off of immunotherapy treatments. I’m not sure how I feel about that, but it’s one less tool in the toolbox, so that’s probably not good. It’s very important that my body respond naturally to the tapering off of the steroids. This regiment will last for 3-4 weeks. I am in phase 1 of 3 right now. Phase 2 starts Friday.
Paige and I are preparing to go to Duke to see what they say. My oncologist welcomed their opinion. The provided some excellent direction that probably saved my summer, so while it’s a pain to drive up there back and forth, I’m looking forward to hearing their medical opinion.
In other news, Paige is not feeling well. She is laid out dealing with some sort of viral-fever issues and a sense of vertigo that comes and goes— and typically comes when she’s driving. Please keep her, and all of our family in your thoughts, prayers, and meditations.
UPDATE: 9/12/19
I wish I could continue with the good news I shared last week. No new developments, but I am starting to feel the side effects from treatment.
Immunotherapy includes the treatment phase (infusion of 2 drugs on a periodic basis) and a maintenance phase (infusion of 1 drug on a periodic basis). I’ve completed the treatment phase and am now in maintenance. The maintenance infusions typically continue for 2 years.
Last week I started to feel some body aches and noticed a rise in temperature. I was exhausted and had to head to bed early. I thought I had pushed myself too hard, and developed a fever. No matter how much rest I got, it didn’t resolve itself. A few days later I started to feel nausea to varying levels. Food has become difficult to get down— it has lost its appeal to some degree. All of this really becomes apparent at night. Fortunately, I wake up hungry, and still really enjoy a good, healthy, breakfast. I seem to have a good level of energy and am able to do stuff until around 2pm or so when I start to feel the aches and nausea.
[sidenote: For a while, I questioned whether my vegan diet was causing all of this. I was seriously considered abandoning it.]
I asked a few people we know who have spouses that have gone through various treatments (shout-out to Ms. Garrett and Ms. Kim, you’re the best!), and they experienced issues with heavy nausea, food taste changing or becoming tasteless, and extreme fatigue. In one case, this happened after the first maintenance treatment. So, I don’t know what this is. I’m keeping my doctors informed, but it seems that I’m finally feeling side effects of treatment. It’s frustrating, because I felt great all summer, and now I just want to rest all-day and only consume bread and water when I have to. But this is the hard part. I knew it would be a struggle lasting years and here’s the first big hurdle. It’s rough on me and Paige. The kids are fine but I can’t be as active with them as I’d like to be. One person told me this phase lasted “a few months.” On one hand, a few months isn’t too long. It’s just temporary, so that’s good. On the other hand, a few months is a season. We just came off of “a few months.”
I’m going to have to recognize my limits, and make tough decisions moving forward. I am considering cutting back my work hours. There are also some trips I was planning that might need to wait a couple more seasons now. It’s not the end of the world— just annoying and frustrating.
UPDATE: 9/5/19:
Today’s update is the featured blog post. Head this page to read up!
UPDATE 8/29/19:
Completed the PET scan this morning. No problems at all. That’s part 2- it’ll show what’s happening neck-down. I’ll know results after Labor Day. I’ll post them next Thursday. Thanks for all the good thoughts and prayers. I’m going to crash now.
UPDATE 8/22/19:
Stupid atypical mole.
I had a body scan with my dermatologist and before the appointment I took a marker to my body and circled everything I considered remotely suspicious.
He looked everything over and only one of the items was worthy of a biopsy. The biopsy process itself was fine, but the wound ended up surprising me by bleeding through my jeans (I thought I had dropped jelly in my lap when making the kids sandwiches). The wound took a couple of days to become ignorable, but it finally did. But, then the results came back a week later, and it tested “mildly atypical.” The doc wanted it cut out, and I was not going to object.
Everything else was going well. I was at full-speed, even considering starting an exercise routine like running. The week itself was a little strange with the start of school looming, but our house just had to go-with-the-asynchronous-flow. But, the good news from the MRI was carrying us. We are on a hot streak headed into the PET scan at the end of the month.
The out-patinet surgery for the mole removal was this past Tuesday morning. The procedure itself was easy, and I felt great afterward. But then, around sometime after dinner with the kids, I gave out. I started limping around and had to prop up my leg. I had to reset the bandage a couple of times but got it secure before bed.
The next day I woke up and couldn’t shower it (I needed to hit the 24-hour mark) but went to work. I took my lunch break to come home to eat and shower (and dress the wound). In the shower I kept gently pouring water over the wound, but it wouldn’t stop bleeding. It looked okay, but the blood was concerning. I cleaned, and dressed it as best I could, but there was still blood soaking through. I called the doctor’s office and they asked me to come in.
I got there and they took a look. It was okay. No stitches ripped or anything. I had just aggrevated it somehow. The edges of the wound were rubbing against themselves, causing the bleeding. They cleaned it, dressed it tight, and sent me on my way.
I went back to work, rocking the shorts and t-shirt look because I thought bleeding through my chinos would be…undesirable. I took the closest parking space and limped around.
It’s annoying. I know this will all be better in 24-48 hours but, for now, I’m back to being a bit useless, especially around the house. The emphasis is around my healing, and not my utility. That’s difficult for Paige because the load of the house and the kids is falling on her, yet again. It’s not enjoyable to endure for me, but I’m not going to seek out sympathy points for my inability to do dishes or bathe the kids.
In the hospital, I remember thinking that if I get through this I just wanted to get to the fall so I could be Mr. Mom. I would drive the kids around, pack the lunches, do the laundry, pick them back up, and do housework needed to keep things moving. I just wanted to spend more time with the kids and free Paige up to make her work situation less stressful (since she is now the household breadwinner). But, I can’t (for now). And it’s frustrating.
My PET scan is next Thursday. In spite of all of this, I need to keep in mind the things I can control and the things I can’t, and only focus on what I can do something about. For me, mindset takes highest priority going into the PET scan. Part 1 was the MRI– we’re good there. Part 2 is the PET scan– it’s going to be good, but I have to get my mind right first.
UPDATE 8/15/19:
I have good news from my MRI taken last week. The cavity where my brain tumor was shows no signs of cancer cells. The 4mm lesion that appeared in May is now “imperceivable.” And the 6mm lesion from May shows a “near complete response” (translated as: significantly smaller). My radiation oncologist even used the term, “home run.”
There are no new lesions. There is no growth. The areas treated have responded. And the chances of further metastases to my brain are thought to be minimal (as in, less than 5%).
I will have another MRI in 3 months and will stay monitored for the next few years. Also, as a bonus, my hair will start growing back in 4-6 months (for those that have seen me, I have some bald spots at specific areas where I received radiation treatment).
This is a huge relief and provides a big boost for one critical part of the problem. I was so apprehensive about radiation treatment to my brain. Now, on the other side of it, I’m so happy with the doctor who oversaw my care and his steadfast belief in the effectiveness of his craft. I am awestruck at what modern medicine is capable of. People are not exaggerating when they say that cancer treatment has progressed at the speed of light within the last decade.
The next part will be what’s going on in my body. My PET scan is scheduled for August 29th and I will find the results at my September 3rd oncology appointment. I am confident.
I had my 4th and final immunotherapy treatment this past Monday. I made it through all the treatments will little to no side effects. Starting in September I go into monthly treatments with just one of the drugs (as opposed to the two required for the upfront treatment). I will receive these treatments for two years.
Brain images below to give you an idea of what this actually looks like.
UPDATE 8/8/19:
I am back from Tampa— back from the beach and back from camp (Cedarkirk— one of the wonders of the spiritual world).
I survived. Managing my diet was more difficult than I expected. There was a lot of peanut butter toast consumed during meals at camp but I didn’t suffer any ill effects. Meditation time was limited as well, but it was worked in.
I had the chance to see people I hadn’t seen in over a decade. I got to introduce my wife and children to a place that is very special to me and we got to escape to a place with no TVs, no social media, only sketchy cell phone reception, and no pantries full of endless sugary snacks. It was great.
Today I had an MRI. This will show what’s happening with my brain. My best case scenario is that is shows scaring from the small tumors (4mm and 6mm) discovered during my MRI and treated with the Cyber Knife in June and scaring from the large cavity created from my brain surgery (and subsequent treatment with the Cyber Knife). I have an appointment with my radiation oncologist to discuss the results next Tuesday.
I am coming back and jumping in a slew of doctor appointments. MRI today. Dermatologist tomorrow. Infusion (treatment #4) on Monday. And Radiation oncologist on Tuesday. I have a PET scan at the end of the month that will show how effective my treatment has been in regards to the tumors in my body. August is a busy month and the start of September will have a similar calendar of appointments. The end of the summer will tell us a great deal.
I still feel very good and, to my knowledge, am not suffering any side effects from the immunotherapy. I am headed back to work next Wednesday to start a part-time, 3-days a week routine indefinitely.
UPDATE 8/1/19:
So I’m typing this out on my phone in a hotel room. It feels like this is one of those rough podcast intros. “Hello, I’m recording this in an airport bathroom waiting for my connecting flight, brought to you by stamps.com!”
Not sure what the formatting will look like but I did want to get an update in. I am still feeling very good but also admitting to myself when I feel fatigued. Things do tire me out quicker than usual but I think there’s a lot behind that (brain surgery, immunotherapy, adjusting to new life routine, adjusting to summer schedule with an 8-year old and a 3-year old).
Work went fine last week. Three half-days. I know they were throwing me softballs to get me back into routine but I appreciated it and the flow came back to me more automatically than I thought it would. Headaches were minimal and the half-day routine is disruptive enough to remind my mind and body that I am not living my old life any longer. I look forward to returning back to it in mid-August.
Right now I am in Clearwater, Florida. Paige, Mina, Will, and I flew into St. Pete airport yesterday. It was an agonizing plane ride. We couldn’t land in St. Pete because of storms. Our flight was diverted to Destin, FL to refuel. Then we were allowed back in the air to land in St. Pete. The 1.5hr flight took over 4 hours. The kids actually handled it really well. Even for Will’s first flight. (At one point he looked out the window and loudly proclaimed, “Mama, we’re going down! We’re going down!” To which Paige and the stranger sitting next to her replied back “No, we’re not! No, we’re not!”) And I remained calm. I didn’t get sucked into manufactured drama. Even when my Dad was messaging me frantic, above all I wanted a sense of calm to prevail. And it did. That feels like a big win for such a chaotic night.
We are turning this trip to Tampa (my hometown) into a mini-beach trip with the kids (since, you know, brain surgery wrecked that original week-long Hilton Head vacation plan) and then we are heading to a child-parent program at a camp called Cedarkirk. I grew up going to Cedarkirk during summers, all the way through high school. I worked there summers as a counselor while in college. It’s a special place for me. And my hometown friends have made this camp program A Sort Of Homecoming for me. Friends from the past are all coming out to join me, one is even flying in from the other side of the country. I am so excited to see them and their families. Some are sending me text messages and saying “Thanks for giving the reason to set this up. Now it’s a yearly tradition.” I am glad to provide the excuse and I look forward to the days when we look back at the pictures we take and watch our hair get more and more grey over the years.
UPDATE 7/24/19:
Treatment 3 of 4 done. One more to go.
The 3rd treatment was a little strange. Some mix-ups in areas where you wouldn’t think there would be mix-ups. I mean, we’re dealing with around $20k worth of drugs to be injected into my veins.
It was mostly regarding check-ins and wait times. Not a huge deal but still really strange. One mix-up regarding dosing. The pharmacist had to come and discuss that one with us. Strange.
But in the end it was the same drugs, same dose, same timing. It just took longer to arrange.
I went back to work today. It felt good. I had to stop myself a couple of times but, overall, not bad. I’m heading back tomorrow. One foot in front of the other.
UPDATE 7/18/19:
I am feeling very good. I have my third treatment this coming Monday. After that I will have only one more treatment to go before a round of head and body scans to see how effective it’s been. I am confident the results will be good. I don’t want to say too much but even through numerous, vigilant self body-checks I have not felt anything new popping up and it is even hard for me to detect some of the “hot spots” that were found earlier.
I’ve been talking with my employer and we are trying me out part-time, half-days starting next week. Everyone is being very careful and considerate— it’s an experiment. I could show up and get into it and realize, “I just can’t do this,” or I could show up, start working, and it could be fine. I think I’ll be okay but you just don’t know until you’re in it. As Mike Tyson said, “Everyone has a plan until they get punched in the mouth.”
I am thinking a great deal about this return to work and how this new-self will function in the old-self environment. I’ve been listening to some lectures by Ram Dass (Experiments in Truth) and a couple of his stories have provided insight how to go about this without regressing back to old-self tendencies. He’s posted these stories on his website too (part 1 and part 2).
The first one is about his time at Harvard, teaching a “Career Decision Making” course. Naturally, a part of it is asking everyone what they really like doing in their free time.
Ram Dass on Discovering Your True Work Path
It would be interesting that somebody would say, “Well, what I really like is being out in the woods by myself for long periods of time.” Then they would think about their career and they’d think, “Well, now should I be a doctor or a lawyer?”
What’s more helpful than backing-into a career choice by convincing yourself it’s what you want is
…to start to lead with your wish list of how you would like to live, how you would like to serve, and then start to tune very, very slowly…What you begin to hear are your unique needs, not only economically in terms of style of life you need, but also in terms of what kind of people you want to be around, what kind of qualities you want to develop in yourself.
Ram Dass on Discovering Your True Work Path
The second story talks about him meeting a bunk-mate at the beginning of a silent meditation retreat (in the 10 minutes when they could talk before the silence began). When asked, the man told him he was a “Vice President of Industrial Loans” at a bank. Surprised, Ram Dass asked how he had come to be at a silent meditation retreat. The man talked about how he left his life, and his job to write poetry, travel the world, and live in a commune. Then 8 years later he was wandering the street and ran into the bank president who asked him to come back to his job because he was the best they’d had.
Ram Dass On Discovering Your True Work Path
“…So, I just thought…why not? I bought a tie and I shaved and I went to work.” I asked him if it was different when he went back than it had been before, and he told me, “It was entirely different. Before, I was busy being a Vice President of industrial loans, and I was meeting potential borrowers. Now I go to this place, and I hang out all day with these beings and the business we do together is industrial loans. But what it is, is beings meeting beings.” See, his identity was no longer in his role. He fulfilled his role but he wasn’t lost in it. And that has a lot to do with how you play it in the business world – whether you can up-level it or whether you get caught in it.
Those anecdotes are helping me keep perspective about this experimental return back to work. It is possible to engineer and to still be a human being and learn from and serve other human beings. I will have stricter boundaries and I will stick to them and invoke them very quickly. But the idea of going “to this place, and hang[ing] out all day with these beings and the business we do together is [civil engineering],” has me excited about going back to work.
UPDATE 7/11/19:
Another week into treatment. I feel very fortunate. I am not having any strong side effects. Evenings are still tough and minor headaches are common at that time of day.
That’s the mind game of “listening to your body” with an illness like cancer. A headache is not just a headache. Everyday I get to play the game of, “Is this just a headache? Is this my brain recovering from surgery? Or is this a new tumor forming?” I don’t like it. My oncologist doubts it’s a new tumors and believes it’s pain associated from my brain recovering. I’m going to stick with that one. My next MRI scan is August 8th and I hear results on August 13th (just a month away!) so we will know for sure then.
Having no doctor appointments has been very welcome. I am in talks about returning back to work part-time. I even got to drive to and spectate a game of ultimate frisbee yesterday. (It’s a lunch-time league I used to take part in 3 days a week. I love it.)
I have had to do some disability homework. If anyone reading this is having to navigate disability stuff and needs some guidance or someone to just talk to, email me. I am fortunate to have a friend who had to go through disability issues and he’s guided me through short-term and long-term choices that I had no clue about. And if your employer offers disability and you’re not on it, stop reading this right now, and go to HR to sign up for disability (or even go outside of your employer to get it if they do not offer it). I remember signing up at another employer and complaining, “Wow. Disability is expensive.” And my supervisor responded, “Try not having disability, and see how expensive it is.”
I also ordered a Lance Armstrong LiveStrong bracelet. For the bargain price of $5.99 from amazon. Only a near 600% mark-up. I take heart in Lance’s story. I don’t really care about the bike part of it. He still beat cancer. And you know what really helped him? Lots and lots of drugs!
UPDATE 7/4/19:
Happy 4th of July. I had my second immunotherapy infusion this past Monday. They used the port to draw blood for labs and to hook me up to the IV with the immuotherapy drugs. I went great– I hardly felt a thing.
The only advice I heard prior to the morning of them “accessing the port” was to cover the port area on my chest with a lidocaine cream a doctor prescribed me, and then put a small square of plastic cling wrap over it until it’s time to draw blood. Huh. This I had to see. So the night before I pulled up a youtube video of a cancer survivor doing this and got the idea. She used a zip-lock bag and just slapped it right on her chest. This also protects whatever shirt you’re wearing.
The nurse said I had done it perfectly and to repeat that next time. My next infusion will be Monday, July 22nd.
I am noticing some missing hair on the left side of my head. I was told this is a possible side effect of the cyber knife procedure. I didn’t think it would take a month but it’s not too bad.
It’s working, folks, it’s working. This all-out assault on cancer is working. Medicine, diet, spiritual well-being, and attitude are all working together.
I feel very good. I’m going to try out a part-time return to work Wednesday, July 24th.
Also, this is what a port accessed infusion looks like:
UPDATE 6/27/19:
No news is good news, folks. My port feels much better. It feels like my body has adjusted and is back to normal. I might even venture a trip to the neighborhood pool with the kids this Saturday.
I have started discussion with my employer about coming back to work on a part-time basis in late July. We still all need to sit down and map it out.
I am entering into a paradox here. I am craving a return to “normal”, or the life I had before April 18th. But at the same time I need things to be a new normal. Different. Less stress. Adjusted values. No more counting. My body needs to sense that this is not business as usual but a new life. So as I pick up the pieces and try to rebuild my daily routine, including work, I am continually reminding myself that I am a New Man and that this is a new, second life. Meditation and reflection are a crucial aspect of this.
I have my second treatment for immunotherapy on Monday, July 1st. I will let you know how it goes.
And by the way, I finally finished David Copperfield last night and I woke up just fine.
UPDATE 6/20/19:
Things were going great. I had a very good Father’s day. I was starting to feel like my normal self. I took the kids to the neighborhood pool 3 days in a row and stayed for 2+ hours each time. (Although I will say, that at the pool I’ve turned into “that guy” as my oncologist advised me. Long-sleeve sun rash shirt, oversized sunhat, huge aviator sunglasses, and zinc-based sunscreen only halfway rubbed in to complete the look. The shirt is white and my board shorts are red. I look like a mix between a volunteer lifeguard and a lost tourist.)
On Monday I even got approval from the household CEO to make my first solo car run to the grocery store for some vegan friendly items. Later that day I even got to pick up Mina from camp because I was doing so well.
Then I got a port put into my chest Tuesday. Now, it’s like starting from scratch.
A port (formally called a port-a-cath) is like a USB drive for your body. If you don’t like needles or nurses are constantly struggling to find your veins then a port is for you. I had a bad experience years ago during a blood draw for a life insurance quote. I was pricked 5 times, had to lay down, and the only way they got it to work was using a butterfly needle (this is a needle so small it’s used for babies). Now, before every blood draw I always inform the nurse that I will most likely pass out and if they have a butterfly needle this would be a good time to use it.
Cancer treatment, whether it’s chemotherapy or immunotherapy, means lots of needle sticks. Lots of blood draws. The immunotherapy infusions last 2+ hours and lab work from a blood draw has to be performed every time before they begin. Given my issues, a port was recommended to me. It sounded great to me. Sure, let’s get this thing in my body so that needle draws aren’t painful anymore and I don’t need to worry about looking like a heroin addict either. It sits in you chest and connects to a vein in your neck. So your arms are also freed up. I made an appointment for an outpatient surgery to have the port put in this Tuesday.
The procedure itself was fine. They don’t put you under but give you an IV to make you very woozy and a lot of lidocaine to the chest and neck areas where they work. I didn’t feel a thing. Everything was fine until I got home and the lidocaine officially wore off. Pain. Lots of pain. Anything using my chest and neck caused pain. Paige (being wise) insisted I take it easy that night and morning so I had minimal interaction with the kids. Probably good for my body but bad for the soul.
That night was rough. It hurt to lay down and it hurt to sit upright in bed— it actually uses a lot of neck muscles. I tried to switch positions and lay on my side the next night but it was too painful. Morning came and I was useless. I couldn’t help pack the kids lunches or even come down to say goodbye to them. Paige (AKA Superwoman) took care of everything.
I had an appointment with my oncologist that Wednesday and I was living for that appointment just to mention the pain. He was surprised. He inspected the surgical wounds but everything looked very good as far as that was concerned. But after a second of thought he did say that I did lack the “ancillary tissue” that most patients have in that area. His nurse chimed in, “You don’t have a lot of ‘fluff’ there.” My oncologist even called the doctor who did the surgery, and that doctor brought me in to ultrasound the area to ensure everything was right. It was. I just felt and looked pathetic, as she noted (that might sound cold but she wasn’t. She is a very warm person to be around). It’s the worst I’ve felt pain-wise this entire journey. The doctors prescribed me some pain medication.
Turns out if you are trim then it’s going to be painful to have a port— at least for the first 5 days. This new thing is just sticking out of your body now. No soft pillows around it to ease it in. I wish I had known this. I felt like I messed everything up for a procedure I didn’t really even need to have. I can’t drive, can’t pick up my children in my arms, showering limits are back again. During the whole brain surgery recovery I did not use any pain medication. I never felt like I needed it. But now I am counting down the hours until I can take my next pill.
I am slowly getting better. Breathing doesn’t hurt. Laying down and sitting up in bed is uncomfortable but not too painful. The combination of the pain meds and time are helping. I did get up this morning and pack the kids lunches and helped get them out the door. I need to get through these next 3 days (I’m in day 2 right now). My body is adjusting, slowly.
My next infusion for immunotherapy is July 1st. I will be using the port for that.
UPDATE 6/13/19:
I am officially in treatment and my doctor appointments are finally starting to wind down. Or at least becoming scheduled on a predictable basis.
To start, I want to spell some things out. I am a cancer survivor. Last week we sat down with a social worker, a financial counselor, and a pharmacist, and one of them presented all of the free courses and therapy sessions they offer at the cancer center. One of them was titled, “Yoga for Cancer Survivors.” I asked, “What technically is a cancer survivor?” The counselor, without missing a beat, said, “YOU ARE!” I loved the response and gave her a high-five. (Maybe I start the Tai Chi for Cancer Survivors class.)
The most helpful details I’ve found regarding survivorship (and what is actually is) is from the Melanoma Research Foundation (which credits the American Society of Clinical Oncology). There are three phases:
- Acute Survivorship- This is where I’m at. It goes from diagnosis through treatment.
- Extended Survivorship- This is post-treatment and goes through the months after.
- Permanent Survivorship- This is long term and focuses on the effects of cancer and treatment in the period of years since treatment has ended and the risk of reoccurrence seems less likely.
If you know anyone dealing with cancer I think it would help to know about these phases.
Now for the medical update. I started immunotherapy on Monday, June 10th at the Cancer Center. (And by the way, immunotherapy and chemotherapy are sometimes used interchangeably even though they are different. When I corrected a nurse she told me that immunotherapy falls under the umbrella of chemotherapy.) They asked, “Would you like a room with a window or TV?” What kind of question is that? Window, of course. (I asked later and it turns out that most people opt for the window. We may make it yet, dear humanity.) The treatment consists of two different drugs administered via IV. Each bag takes a half-hour to get into my veins. But before they give you the drugs they take a blood sample for labs to make sure you’re okay to get them. Then they put in the order for the pharmacist to mix them immediately. Then they give you some saline. Then the drugs. Then, for the first time they make you sit for a half-hour for observation to make sure you don’t have any immediate adverse reactions. (This is a first-time only thing.) Known side-effects: joint aches and pains. Skin irritation and rash. Running to the bathroom and not to pee. I’ve had some of these already— which is actually a good sign as it means the drugs are working, fortunately I haven’t had to run to the bathroom yet.
All in all, I felt good after the infusion. I did start to feel slightly skin burning sensations but nothing to contact a doctor about.
Tuesday, the following day, was my radiation treatment. Stereotatic radiation to three spots in my brain. One for the cavity, and two for the recent 4mm and 6mm spots they identified last week. I am going to post pictures of the mask I had to wear (which I got to take home) and the view from the conference room-style “observation room” where Paige sat and watched. They were happy to ask what Pandora station I wanted. I asked for Bach (if you listen to classical music, especially Bach, that is at 70 beats-per-minute, your heart rate will automatically sync with the music. I wanted to be calm and at peace for this.) The procedure was 35-40 minutes long. I kept my eyes closed the entire time.
It’s strange. (Of course, it’s strange!) Nothing actually touches you. You can hear these machines moving around to match whatever pre-programmed course they follow to aim directly in to the pre-determined spots on your head. Sometimes the table you are lying on has to move up or down. They said mine would probably tilt by 5 degree sometimes but I never felt that. The sense of sound is the main sensory element. It was quite peaceful. I mediated and listened to music. After the procedure I felt fine. I gave the radiologist technician a hug. I saw the doctor and he talked about side effects and advised me not to go bungee-jumping, sky-diving, or base-jumping today. We set appointments for 8 weeks out. An MRI and a follow-up to discuss the results.
He did set expectations for that follow-up appointment. He is not going to come in and say the results are “all clear.” The most ideal scenario is that he will say the results show scaring where we wanted them to. He said to think of it like skin cancer. You surgically remove the suspicious spot but there is always a scar left from surgery- your skin isn’t clear.
So 8 weeks is mid-August. Let’s hope for scaring where it needs to be and no more up-and-coming tumors.
I walked out of the hospital feeling fine. I took it easy the rest of the day but still felt okay. Then, after the kids were in bed, 9pm rolled around and I felt like I was hit by a train. I was so cold. Then I was so hot. My head hurt. I took Tylenol PM but still couldn’t sleep. I did not want a fever. If I get a fever of 100.5 degrees I have to call it in to the Cancer Center. And I do not want to risk be taken off these drugs. It was a rough night.
When morning came I was still laid out. Paige had to handle the kids and get them off to daycare / school / camp (whatever you personally want to call it). I slept in til 10:30am. But I woke up feeling much, much better. I called the nurses number and she said fatigue for 24-48 hours was the most common side-effect. Boy, I’ll tell you, radiation into your brain will give you a heck of a bad night.
Right now, I feel good. I got in some driving time with Paige in the car. I’m starting to get back to normal activities. Even sneaking in some push-ups every now-and-then. No more serious appointments until my next infusion, July 1st. The infusions are 3 weeks apart so my final one will be early August and then I’ll have a PET scan to see results in late August (my guess). Keep sending the good thoughts and prayers my way. I will keep on surviving.
Also, I got a haircut! Feels great!
UPDATE 6/5/19:
You’ve heard it said that when it comes to healthcare you have to “be your own advocate.” My experience in the past two days has brought home how true that aphorism is. My advice to anyone who has to deal with healthcare bureaucracy is to be an extremely pleasant patient but do not be a passive patient. The last item is probably more important.
For some reason everything is scheduled two days out automatically in the healthcare industry. It has been a crazy week but just by working the phones and asking politely (with persistence) we had a work-in MRI on Monday, a work-in planning session for my stereotatic radiation on Tuesday (where they made the plastic mold of my face in a matter of minutes), and got my neurological follow-up appointment moved from late June to today. The biggest and most significant schedule move is that my immunotherapy is scheduled to begin on Monday, June 10th. This is really, really good news.
Greenville beat Duke. Everyone was collaborative- this wasn’t a college football game but Greenville moved quicker and advanced the schedule faster when pushed. I supposed the speed boat versus aircraft carrier analogy is apt here.
Duke put up some red tape and then called back offering to make everything happen in 2 weeks (which is incredibly considerate) but Greenville had already responded and scheduled my much needed first immunotherapy session for Monday, June 10th. Duke would be late June, at-best.
Duke still offered up their notes and advice to Bon Secours (the Greenville hospital system I’m being treated through) and the doctors at Bon Secours did not take any umbrage to Duke’s suggestions that differed from their own. I am still extremely grateful for being seen at Duke and the one appointment and exam I had with the doctor there. I hope I am able to have a follow-up with him down the road. One of his nurses said of course, he would be open to that.
My stereotatic radiation (where they shoot radiation into specific parts of my brain) will occur either this Friday or next Tuesday. This is an escalated schedule move as well. The radiation oncologist doctor is one of my favorites. From my first handshake with him he has had a sense-of-urgency about my treatment. I’ve been able to invoke his name and his wishes to make real progress pushing schedules forward.
Now, good news-bad news. Bad news first. When we had the work-in planning session for radiation oncology, the doctor was able to pull up my MRI results from the previous day (Monday). He informed me that the radiologist noted two new lesions in my brain. One in the right frontal lobe (again) and one in the left frontal lobe. As far as my procedures were concerned it meant that I would be shot up with radiation in three places in the brain instead of one. The cavity (where my tumor was removed) and these two new lesions. These new lesions are very small. One is 4mm and one is 6mm. There is still just one session of radiation and it might be 15 minutes longer now but it does not significantly change the course of the recommended one session of stereotatic radiation. So that’s good.
But I was seriously sadden to hear this. I thought my head was all fixed and the only slight pains I had been experiencing were related to my brain recovering from the tumor removal. In the 6 weeks since the surgery, two new lesions had appeared. This is what advanced stage means. It moves fast and keeps popping up. They were small and my radiation oncologist was confident (at this size, the move would still be radiation. Surgery would not be on the table for lesions this small) but I was still really depressed by the news.
Now, the good news. My radiation oncologist called me 4 hours later and informed me that those lesions were on the MRI I had before my brain surgery. He explained that because they were so small they were mistaken as blood vessels and said he would show me an example next time we meet. Also it’s hard to spot these extremely tiny lesions when you have a giant, swelling tumor staring you in the face on the MRI. I was very relieved. This meant that, as far I know, there haven’t been any new lesions! These were there all the way back on April 23rd (my pre-surgery MRI)! And, I can’t say for sure, but it doesn’t sound like they’ve grown. I’m very happy at the moment with this news.
The story I tell myself is that my new habits are stopping my cancer from growing and spreading. I have entirely quit alcohol. It doesn’t even have an appeal for me now. I’m lucky to have the brain function I do, messing it up with alcohol sounds incredibly stupid, even for a passing feeling. I have also quit desserts and sweets. It’s anecdotal wisdom that cancer loves sugar, but I need all the help I can get, so I’m taking it seriously. I’ve stopped as much as I can. For a while I was still eating breads too (which turn into sugars) but instead I’m going with the good starches (brown rice, sweet potatoes, purple sweet potatoes, and quinoa). I’m flirting with an entirely plant-based diet and maybe veganism. I have to believe my meditation practices have also helped. I turn my meditations into prayer and am trying to meditate constantly. I actually really like waiting now because it gives me time to meditate.
An oncologist might shake his head at all of that and say that nothing is as good as the drugs I’m going to receive. And that’s fine. But we are story-devouring machines and this is the story I am living out and telling myself.
UPDATE 6/2/19:
Duke has so much firepower.
We had a very good appointment with Duke yesterday. It was our first conversation with a melanoma expert. At first we had a rough time navigating around Duke. We parked in the wrong parking deck. Then trudged around an unfamiliar campus in 90+ degree heat. A friend of mine later referred to it as a “maze” and he is right.
We eventually found our way and like anything big everything was systematized to the nth degree. The reception desk isn’t a window with a person to talk to. It’s a mini-open cube farm with roped delineators showing you how to weave the line around. Once you start actually talking to human beings everything becomes different.
Everyone was very accommodating and sympathetic. The perfunctory aspects were quick and efficient. People still smiled at my jokes. We were not made to wait long. We were asked to confirm that we were there for a “second opinion.”
We were seen by a resident doctor before the expert. He was very nice and genial. He listened carefully to everything I had been through and experienced. He asked to feel the the nodules in my body (this is actually the first time someone has proactively felt for these nodules).
After some time (but not too long) the expert doctor came in. He was very understated but not dry. He looked at my history and gave his take. Items of note:
He agreed it was most likely a regressive melanoma and said that my immune system probably took care of the primary melanoma on its own– which is a good thing.
He did not agree with the need for surgery to remove the lung nodule. He stressed the need for a total systemic treatment. Even if the nodule is removed and the margins come back clear from pathology that does not take care of micrometastases (tumors too small to be seen by the naked eye) that could remain at the cellular level close to or around the lung nodule. He stated that the with doctors taking a more systematic approach to healing that the role of surgeons is shrinking. It’s only with locations that cannot tolerate tumors, like the brain, where surgery is absolutely necessary. He did not recommend surgery for any of the other nodules either. Complete systematic approaches were necessary before resorting to something like surgery.
I am a good candidate for immunotherapy and if I had been treated at Duke would have started 14 days after my metastatic melanoma diagnosis.
He is in agreement with the need for stereotactic radiation to my brain. This should be done as soon as possible.
My conversations with this doctor and my local radiation oncologist the previous day put my fears at ease about this procedure. It would be limited to only one session that would last 30-45 minutes. I would need a plastic mold of my face made first in a “planning session” appointment and would need an updated MRI first. All of this will take time.
He examined me and felt for the nodules and examined what lymph nodes he could with his hands. Again, this is the first time a doctor has proactively felt for these nodules on my body.
He finished the appointment by saying if we needed anything that they could fit us in and take care of things quickly at Duke.
Reading between the lines, he was saying that I am behind schedule for several items I need to take care of. And Duke could take care of them very quickly. It’s all about time.
And time is the big question. Can Greenville schedule these things aggressively? I hope they can. I would rather receive my treatment here and be close to my children. But Duke is only a 4 hour drive away and can schedule everything I need with extreme expediency.
Monday will determine where I will receive treatment. If Greenville pushes out the schedule and it’s the first week of July before immunotherapy, that’s too long. Duke has so many resources and so much manpower. I massively underestimated how much resources matter for problems like this. It’s not about radical medical opinions or prestige. It’s about all of the resources you have at your disposal. That’s why these big cancer hospitals are a big deal.
UPDATE 5/28/19
We are on a fast moving train.
We had a consult with the thoracic surgeon today. This was to discuss the surgery required to remove the nodule in my lower right lung. The biggest issue with all of this is the most ideal sequence of procedures and treatment. Should the surgery come first? Will the recovery time allow for immunotherapy treatments in 2 weeks or sooner? If not, the how many rounds of treatment of immunotherapy should we fit in before the surgery?
All of this was put to rest this morning– at least partially. The surgeon was very matter-of-fact about the entire procedure, the timing of the surgery itself, and the recovery. I will have to have a small bit of my right lung taken out to ensure that the entire melanoma is removed with clear margins. The surgery itself will only be 20 minutes but more like 60 minutes in total when you factor in prep and anesthesia. (We find this remarkable.) The recovery will only require a 1 night stay in the hospital and treatments like immunotherapy can start as soon as 1 week after the surgery if needed. This is all really good news.
The only loose end was scheduling the surgery. We asked for as-soon-as-possible and we got Monday, June 3rd. That’s in 6 days! Setting this in stone touched off a cascade of scheduling conflicts. We spent the afternoon checking in with my neurosurgeon to make sure he thought I was even fit enough for surgery and then trying to reschedule my conflicting appointments with his office. He was in full support of the surgery and moved his appointment to mid-June. This is a little rough because we were looking forward to our appointment with him. I am really hoping he will clear me to drive and take on more strenuous activity. But I am happy to be on an aggressive schedule to get this lung nodule out and get through with the only remaining surgery I need (at this moment).
The other dimension of this is something I haven’t mentioned yet. At the behest of friends, families, and other doctors were are seeking a second opinion. In our case, we really need to see a melanoma expert. If you pull up any of the hospitals I’m about to list, the staff will show 10 or more doctors specializing in melanoma. That’s something we don’t have here and we feel strongly we need to see before making peace with our decisions. This second opinion will also serve a dual purpose in helping determine the most ideal sequence for procedures and treatments.
We are all very fortunate today that medicine has become very collaborative. Gone (well, mostly gone) are the days of the ego-fueled doctors that can’t handle a different perspective. Every doctor we’ve met with has welcomed a second opinion and worked cooperatively to get the records and information needed to whichever institution we chose.
Anyone that comes into contact with cancer will be familiar with the top hospitals commonly tossed around. Here they are in case anyone has to start from scratch (in no particular order):
- Mayo Clinic (various locations across the US)
- Cleveland Clinic (Cleveland, OH)
- MD Anderson (Houston, TX)
- Duke Cancer Institute (Durham, NC)
- Emory Winship Cancer Institute (Atlanta, GA)
- Memorial Sloan Kettering Cancer Center (New York, NY)
- Dana-Faber Cancer Institute (Boston, MA)
- John Hopkins Oncology Center (Baltimore, MD)
I am sure there are great hospitals I’m leaving out. These are tough choices. Logistics and distance are factors. We made a list of our top 3 and starting cold-calling as self referrals. Amazingly, we ended up with an appointment at Duke Cancer Institute this Friday, May 31st with a melanoma oncologist. We are very excited and slightly nervous. After this morning it seems like all of these events are falling into place. We are hoping the whole china cabinet isn’t entirely upended by a radical directive by this specialist. On the other hand, if that’s what we have to do, we’ll do it. We really think we will walk away Friday with a good idea of what should happen, and when.
The medical community is working tirelessly to turn cancer into a chronic condition that’s treatable.
Dealing with cancer is kind of like being on a fast moving train when the laborers are still laying down the tracks as you’re moving. You hope that you can buy some years and that in those years more medical breakthroughs and advancements come so that you end up with more “track.”
A note about updates.
I know that the post date of these updates will be after the date contained in the text. It’s taken me some time to get this blog up and running, and doctor appointments have not stopped. I will keep this blog updated in real-time from today onward, and the post dates will match the date in the text of the update.
UPDATE 5/21/19:
The PET scan and the follow-up results discussion with my oncologist was today.
Long story short: The PET scan revealed 4 small nodules in my body. One on my right thigh (we knew this was coming), one in the middle of my back (we suspected this), one in my left glute, and the one we already knew about in my right lung. That’s all- no lymph nodes, no liver issues, no stomach issues, no pancreas issues. This is very good news, and my oncologist is “very encouraged” by the results. We are extremely relieved.
The lung nodule will require surgery to be removed. The rest of the nodules should be able to be taken care of through immunotherapy. I will still need radiation treatments on my brain, and this makes me a bit squeamish. I already went through one major brain operation and came out with my faculties intact. I don’t like the idea of taking more chances with my brain, but melanoma may leave me no choice.
We have some homework to do to figure out the timing of the surgery and the immunotheraphy. Which should come first? We continue to dig.
UPDATE 5/20/19:
I had my rectal exam today (which included a prostate exam as a bonus), and nothing concerning was found. Hooray.
As soon as we left the doctor’s office, I got a call from my dermatologist. The biopsy of the bump on my left thigh had come back as a metastatic melanoma.
This means that the melanoma is definitely spreading.
Paige found a small bump on my back that was presenting exactly the same way as my left thigh. We are now thinking that that is a melanoma, too.
We have the big test scheduled for tomorrow at 7am. The PET scan. This will show the “hot spots” on my body that are melanomas.
We are extremely nervous about the PET scan because now we know for sure there is no way it will come back clean. I had a melanoma in my right leg and most likely on my back. However, there’s nothing more we can do.
We continue to pray.
UPDATE 5/14/19:
I had my eyes checked by a neuro-opthamologist, and he didn’t see anything concerning in my eyes. He recommended I get a rectal exam because he had a friend who had a primary anorectal melanoma who sadly lost his battle to cancer. He did mention that usually there was warning signs of discomfort and issues with bowel movements that signal this, but it would be best to get it checked out.
UPDATE 5/8/19:
I saw my oncologist, and he recommended I follow-up with my dermatologist and have all of those records sent to his office.
I then saw my dermatologist, and he did a full body scan (which I had previously had yearly and now it’ll be every 3 months), and he recommended I get my eyes checked (melanoma can be in the irises of your eyes), get a colonoscopy, and have an endoscopy to check for melanomas. His body scan did not find anything like melanoma on my skin or in my hair.
Melanoma is a sneaky cancer. It isn’t necessarily on your skin. It can start there, but it can also be inside your body. It could be something you’re born with that develops and spreads later in your life. So my dermatologist was suggesting I check all of the available real estate of my body- external and internal, and go from there.
Since I have a PET scan scheduled, my oncologist said that the colonoscopy and the endoscopy would not be necessary since they would show up as “hot spots” on the PET scan.
I also pointed out a spot on my right thigh that felt like a little bump just under the surface of the skin. We decided to biopsy it and see. I’ll report back.