TL;DR - A Short Post

Recently my wife told me something I never thought I would hear from her or anyone:
"It's annoying how little you complain about the chemo."
Actually, it's something I never thought I would hear any wife/husband say to their husband/wife if you take away the last three words.

I have not completely processed the statement yet but just to be clear: I do not enjoy the chemo experience.

Yesterday morning our local NBC affiliate aired this neat little segment on me and my record collection:

 

It has prompted some great response from virtually everyone who has watched it. Sincerely - I am very, very grateful. I encourage sharing this with anyone who might enjoy it.

In the video I am described as fighting stage four brain cancer. I was initially surprised to hear it - I mean, I do not have stage four brain cancer. I had not mentioned anything about a cancer stage during the interview. It was not a big deal, took nothing away from the segment - they did a great job with such a limited subject matter (haha).
Eventually I realized my last post on this blog began with the cheap joke "Brain cancer is actually really easy to beat. I'm already at stage 4." There arguably isn't such a thing as stage 4 brain cancer. There are stages for cancer in general, but brain tumors are more typically represented in grades. It is fairly common knowledge that "stage four cancer" is bad which is the basis for the joke from the blog.
I should have considered the possibility that one could take the statement literally. With this in mind I thought it might be useful to give a quick rundown/refresher on all tumor-related things - set the record straight, if you will:

• Tumor type: Papillary Tumor of the Pineal Region
• Read about it here: https://en.wikipedia.org/wiki/Papillary_tumors_of_the_pineal_region
• There are around 130 different types of brain tumors. Many of the more common types are wildly different from this one.
• A recent case study on this tumor noted an 85% survival rate for 36 months after diagnosis. I do not know what this means for time after 36 months. I was diagnosed 48 months ago. Regardless, this probably means around 15% of people did not receive treatment in that time.
• I have repeatedly promised Devin that I will never die which is probably a more important consideration.
• Self-imposed tumor name/nickname: "BKP"
• Stands for Bernard Karmell Pollard, retired NFL Safety who:
• Tackled Tom Brady in the first quarter of the first game of the 2008 season, tearing Tom's ACL, tackled Wes Welker in the final regular season game of 2009, tearing Welker's ACL/MCL, tackled Rob Gronkowski in the 2011 AFC Championship game, causing a high ankle sprain which limited Gronkowski in the Super Bowl loss two weeks later, and tackled Stevan Ridley in the 2012 AFC Championship game, causing a concussion.
• All of these people played for the New England Patriots, while Pollard played for three different teams during this time.
• I realize this entire section is way too much information for most, but it comes up often.
• Brain surgery history:
• Biopsy (Nov. 2015 - WellStar Kennestone)
• Shunt placement (Dec. 2015 - WellStar Kennestone)
• Resection (Jan. 2016 - Duke Cancer Center)
• Tumor grade: 3
• Previously thought to be grade 2, presumably identified as 3 once it returned in 2018. Read about tumor grades here: https://www.cancer.net/cancer-types/brain-tumor/grades-and-prognostic-factors
• Tumor grade info more specific to my tumor: https://en.wikipedia.org/wiki/Papillary_tumors_of_the_pineal_region#Grading
• Tumor classification: malignant
• Identified as malignant once it returned in 2018.
• Seeing it labeled as "malignant" on a document recently was a difficult experience on an emotional level. Ignorance was bliss on that front.

• Chemo type: Carboplatin
• Chemo side-effects I have experienced: extreme fatigue, nausea (etc), mental/memory lapses, "chemo fog"
• Original chemo infusion frequency/duration plan: every 3 weeks for up to a year.
• Up to 17-18 total infusions
• Source: my calculator when dividing 52 weeks by 3.
• Infusions completed at the time of this post: 10
• Current/new chemo infusion frequency plan: every 4-5 weeks for up to a year.
• Completed infusions plus projected remaining infusions by the one-year point: 15
• Change in plan is recent development, occurring because the chemo is working!
• Post-chemo plans of note:
• Likely minor surgical procedure to correct double vision
• Trip to Cooperstown, NY - baseball hall of fame
• Outliving everyone reading this
• No current plans to commit murder to achieve this.
• If I had more charisma I'd consider a Jonestown situation...
• Not really.

No Brain, No Pain

Brain cancer is actually really easy to beat. I'm already at stage 4.

Just kidding. I think I have procrastinated in creating this post for long enough. This is being written as I undergo my sixth treatment of Carboplatin chemotherapy. I actually have an IV in my arm at this moment. My wife calls the treatments "carbo-loading."

Vision - I continue to experience double vision and still nearly always wear an eye patch. Complete strangers continue to make remarks related to me being a pirate. I do not mind it on the surface, and I'm in no place to talk, but the lack of originality is upsetting. Anyway, my neuro-opthalmologist tells me my vision has shown significant improvement since beginning treatment. She notes that the left/right misalignment is nearly gone and the up/down misalignment is getting there. I cannot tell much difference but I guess it is reassuring to hear a certified professional tell you that you are not cross-eyed.

Chemo - All-in-all I have been able to handle chemo and its side effects much better than I ever expected. Through five treatments I have vomited only once, maintained my luxurious mane, avoided catching any significant colds, have not sustained any cuts, and, as far as I can tell, I am not currently deceased.

Side-effects - I feel somewhat foggy after each treatment and find I am very susceptible to motion sickness for a few hours. The night of the treatment is always followed by a very irritating pain in my hips and other joints for a few hours. The toxicity of my body fluids for the first 48 hours after each treatment has not been a problem to my family as far as I can tell. The doctors recommend that I flush the toilet twice after each use during those hours - hopefully this is done to be sure my family is safe from any toxic fluids and not their way of saying I smell.
The nausea was tough at first. I vomited on the Monday morning after my second treatment. I was up early to prepare for an important work meeting and somehow did my 30-mile-each-way commute anyway. Because I was warned that the side effects would get progressively worse with each treatment I was surprised when the third treatment felt more like the first. During my fourth treatment one of the folks at Piedmont told me they'd changed my anti-nausea medicine (given via IV right before the Carboplatin) for the third treatment. This has been a huge improvement to both nausea and fatigue levels. The fatigue has been significant regardless of the medicine but treatments 3 through 5 have been nowhere near as bad as 2. And my wife says I am extremely old and that this is probably why I am tired. Oh.

Death - There have been scientific studies which show that being dead can be very bad for your health. I am happy to report that, unlike when we first found the tumor was recurrent, I am no longer constantly thinking about dying. I have stopped writing in the notebook I bought to tell my daughter about my life, etc, in case it was suddenly over. I no longer feel like this is imminent. I am actually getting better. The now-relieved emotional weight of these thoughts is difficult to put in to words. I would like to try, if only for posterity, but not now.

Needles - I have come to hate them. I keep a notebook to help me remember questions to ask the doctors, keep record of tumor-related experiences, etc. In this notebook I add a tally each time I receive a freaking needle. I have treatment every three weeks. Around a week before each treatment I have to get blood work and I have an MRI before every third treatment (2 months). So since the first blood work ahead of my first treatment in April I have been pricked 17 times. Most were fairly routine but 3-4 were very painful due, at least in part, to insufficient hydration on my part. Having an IV fail, requiring additional needles to continue treatment, has been the worst. Some bad news for, like, every musician ever: it appears I have discovered a reason people should avoid heroin.

Chemo Brain - It is very real. I have lost (and eventually found) too many household items to count and changed various different routines to prevent more of this from happening. Not only is my short-term memory completely horrible, but so is my short-term memory. When you open a refrigerator or walk in a room and cannot remember what you came for then you have some idea of what it is like. Not constantly, but still.

Size Matters - In the time I have been writing this I received the results of the MRI I had before today's infusion. Through five infusions the tumor has been reduced to around 45% of the size it was when chemo began. More than halfway gone. It is working. If this pace continues I will not have to do chemo for as long as originally projected (every three weeks for up to a year). Wow.

Run For Your Life - I've recently learned of the Southeastern Brain Tumor Association which is based locally and does neat things like tumor-centric scientific research, conducts clinical trials, hosts support groups (in the middle of the week during business hours grrr), hosts conferences, hosts 5Ks... This year's 5K is scheduled for the morning of Saturday, September 21st. My wife is an avid runner who claims exercising helps her relax. I guess she has never heard of not exercising.
Nevertheless we have registered for the event and she created a team for us. The team, like this post, is named "No Brain, No Pain." Open invitation: here is the link to the team page if you would like to join us for the event or make a donation to the SBTA. Among other things it comes with the guarantee that you will beat me, even if you elect to crawl on your hands and knees.

Remember when you wanted what you currently have - It is hard to type with a stupid spike in your stupid arm so I am stopping here.

Chemo Primo Eskimo Cameo

Last week I met my new Oncologist and set out the specifics for the chemo treatment. It was an unexpectedly positive experience. She is extremely knowledgeable, understanding, reassuring, impressive...
She never outright disagreed with anything Duke told me but the overall takeaway I had from the visit was that my chemo (Carbo) is usually manageable with many side effects preventable. Even the worst of the side effects would not necessarily even begin for several weeks. She referred to Carbo as "a simple and elegant" drug which made me laugh out loud. This must mean it is administered by a nurse actively extending his or her pinky. Was my doctor talking about the poison I'll have painfully injected in to my body over the next year or the season's most chic wedding dress?

I am posting this on a Tuesday (4/2/19). I begin chemo on Thursday. Soon.
As expected it will be every three weeks. They also have me do blood work a week or so before each treatment - a relatively small thing but another doctors visit all the same. Estimating, but over the course of the year I will have 7 MRIs, 18 bloodwork labs, 18 chemo sessions... that's over 40 needles. I think I'd prefer pins.

Reflecting on the visit with my new Oncologist I wonder if I was destined all along to be her patient. She is apparently on a first name basis with my original/beloved Kennestone neurosurgeon, all three of my primary Duke doctors, and my Piedmont neuro-ophthalmologist. I cannot imagine there are many people who can claim this, let alone one local to me and assuming responsibility for killing parts of my brain. I wonder who else she knows - I forgot to ask if she knew my 7th grade history teacher Mr. Tickle.*

Regarding my 'feelings,' the more positive presentation of my upcoming treatment has boosted morale a bit. For the time being I do not feel like I am going to die before everyone I know.

Insane in the membrane...

• I need a new name for this blog. Or any name.
• I'm probably not changing the name of the tumor. #fubkp
• I am never opposed to fielding questions about this experience. Please email: pauljrehm@gmail.com or send me a message on Facebook - I might do another Q&A post like the one from a few years ago.
• The kindness I have recently experienced from everyone has been hard for me to comprehend (in the best way possible). I am very bad about responding in the way you deserve but it means... everything.
• Re: my recent post: we now have an elliptical, a contractor has been out to look at the shower, a rolodex of pet pictures, lots of babysitters (some still willfully ignorant to the mandatory end-of-night return-the-baby policy). I have many people I still need to respond to but I see the messages and they are great.
• A few years ago there was a donation site established on my behalf which allowed us to pay off my surgeries while I was out of work. I remain hopeful that I will not miss a significant stretch of work and have not re-shared this but have still had several of you go out of your way to provide financial support. I am in awe of each of you.
• The advice I have received, especially in recent weeks, has been invaluable. When one goes through this there is no shortage of opinions/suggestions/ideas to sort through. I am not going to address each but I am considering everything and have repeated several of these things to my doctors to get their input. I am not going to go in to detail here (will probably save for another post), but I have already made several changes based on these inputs.
• Those who have been through (brain) cancer, chemo, brain surgeries, etc, have been much more meaningful to me this go-round. Perhaps I did not previously truly understand what these perspectives offered me.
• I've diligently made myself available to others with brain cancers over the last few years and intend to continue to do so, all inspired by those who offer their experiences to me. Please do not hesitate to encourage others in similar situations to reach out to me.
• Have any of you ever been treated with Carboplatin? I would like to talk to someone who really understands the 'simplicity' and 'elegance.'

Another post coming in the next week or two with my early chemo takeaways.

*'Mr. Tickle' is not a nickname. Michael Jackson did not teach my 7th grade history class.

Timeline

My appointment with the new oncologist is Thursday (1-2 days from now). Will set the chemo plan and schedule.

I put together this timeline the other day and figured it would be useful to those new to the blog who do not wish to read old posts chronologically:

2nd column is days elapsed since the prior major event.

Anyway, to pick myself up from the overwhelming emotional weight of thinking about everything that has happened in these terms I made a second timeline showing my absolutely ridiculous fortune in sports fandom over the last 18 years...

A few of these are a bit of a stretch for me to 'count' (long story) and a few lesser sports or championships (NASCAR, UGA SEC titles, etc) are excluded which probably offset the stretches. Also not shown are the additional six or seven championship round defeats from this stretch. Again, all in all absolutely ridiculous. Compiling was a welcomed distraction.

A recent thought - would I trade all of these if it meant the tumor never happened? I do not know what positive experiences anyone would or wouldn't trade to prolong their lives by a week, month, year... dwelling on what might have been may be unproductive, putting it mildly. The positives though... wow:

Be Not Afraid

If you like bulleted lists then you are in for a real treat.

The Duke visit is done. It was frustrating. The summary: I am going to be treated with chemo, it will be administered via IV in Atlanta every three weeks. The specific treatment is Carboplatin. The total treatment period will be one year. After six months the doctors will know how the tumor is responding and could make adjustments appropriately. If everything goes according to plan I would transition to monitoring via MRIs every two months for a while.

I feel consistently sad about all of this. Sad might not be the right word but I am not interested in thinking about it enough to find an adequate description.

I find it hard to hold focus on them, but there are definitely some positives:

• More surgery is only in play if the chemo is ineffective.
• Immortality would be really daunting - what a relief.
• The name Carbo is fun - great pun potential (Carbo loading, going low-Carbo, etc) and in game six of the 1975 World Series Bernie Carbo of the Red Sox hit a game-tying pinch home run, paving the way for Carlton Fisk's famous game-winning homer.
• Carbo's side effects, however unsettling, are not as bad as other types of chemo. Hair loss, for instance, is relatively uncommon.

Fixed it.

Here are other things I am now reasonably sure of:

• It is the same tumor. The original tumor grew.
• I have been mulling calling it something else - in a lot of ways it feels like its own thing, independent of my experience a few years ago. I don't know. "BKP 2: Electric Boogaloo?"
• Because I will be treated locally and because of the treatment plan itself, I am hopeful I will not miss much work, or at least not have to take a leave of absence.
• Significant lifestyle adjustments forthcoming - avoiding normally minor issues which are magnified because of the common Carbo side effects: low white blood cells (getting a cold would be very bad - go to the ER if my temp hits 101+), low platelets (have to avoid even minor bleeding, ie shaving, brushing teeth), anemia (fatigue, lightheadedness).
• Carbo is not as bad as others. This does not make it good but I will try to remind myself that others have it far worse.
• At home I have the support of my wife, daughter, and most some pets.
• Recurrence will always be a risk with additional chemo as the most probable treatment. This is what I meant by "I will never be rid of it" in my previous update. Reminder for myself: stop thinking about this part. 
• I am committed to eliminating all of the cancers. After that, the capricorns.

What I Don't Know:

• ...much, but I know I love you. ♪♪
• Why my double vision occurred before the June 2018 MRI which showed no tumor growth and has not changed. I brought this up multiple times, just did not get a satisfactory answer. I do not think they overlooked it, it is visually apparent to anyone when you see the MRI.
• Exactly when and where I start treatments. I am meeting with a local, Duke-referred oncologist fairly soon but even this meeting is not yet scheduled.
• Why the tumor has grown - if it even matters
• Whether or not I will pursue any of the various suggested alternative treatments/side effect mitigation.
• When my freaking vision will improve.

I have already been asked by so many people how they can help and have even had a few send us unbelievably thoughtful items and words since my previous update. I do not know whether we will require financial support but I think our insurance is going to cover all of the major stuff and while insurance is far from free I do not feel comfortable or justified in setting up a YouCaring/GoFundMe unless circumstances change.

My mother has been adamant that I should generate and share a list of things we need help with regardless of their relationship to the tumor. She says “people want to help” and “don’t be a blessings blocker” and probably a bunch of other stuff after I zoned out. Much like all compliments, acts of kindness/generosity, kudos directed toward me, this makes me uncomfortable. Oh well. The following is the list, excepting the obvious "bags of cash," "new sports car," etc.

• An elliptical or treadmill or similar (used - need to do low impact/risk exercise)
• Meals in the days immediately following treatments (I will basically be radioactive for a few days after each treatment so I cannot help cook or do a lot of ordinary housework without risk of contaminating Devin, Quinn, etc)
• Lawn work - mostly mowing (as mentioned above I'll have to avoid getting cuts or bee stings or similar) Actually I'll probably find someone in the neighborhood to pay to do this.
• Come to my house and listen to records (this is an alternative treatment option I just came up with)
• Fix our shower. It does not drain properly because it settled angling the water away from the drain. Probably a pretty specialized task but I don't even know who to call to get a quote on something like this.
• Assistance with selling various items, either on eBay or Craigslist or equivalent. Would include photography, shipping, etc. (I haven't had time to do it myself and this will not get any better if I am tired all the time).
• Pictures of your pets to be delivered to Devin via text message or email or social media
• Come to my house and watch movies (another experimental treatment option I just invented - plus Devin got me a fancy projector this Christmas so if the weather is nice this could even be outdoors or something).
• Assistance with an internet project documenting minutiae of Impulse Records. Would include photography, data collection... not a weekend project.
• Help breastfeeding babysitting Quinn when Devin is overwhelmed. Please be mindful that Quinn would have to be returned at the end of the night - you may not keep her.

This is all for now. If you are still reading you have my heartfelt sympathy.Your inexplicable interest makes me write here, and the writing helps relieve some of the frustration and existential weight of it all. Grazie.

Still Here

It was almost three years ago when I last wrote a blog post about my brain tumor "BKP" and the roller coaster ride it took me on. I stopped somewhat abruptly as I was back at work and almost immediately too busy to devote the time to doing it properly. Everything in the last three years had been fairly smooth, health-wise. Radiation had some frustrating side effects - around 6 months of feeling way more tired than I ever had, plus some very strange headaches around 16-18 months after radiation completed (apparently a common issue).

In early June 2018 I began experiencing double vision for the first time since late 2015 when I was first diagnosed with the tumor. This was very frightening at first - one of my key original symptoms had returned which must have meant the tumor was back. At one point the paranoia overwhelmed me - I went to the emergency room. A week or so later I finally had an MRI which showed no tumor growth. Phew. I sent the MRI results to Duke.

When I was actively posting here a few years ago I'd written about an Arcade Fire lyric which was resonating with me at the time... "Can you understand? | Why I want a daughter while I'm still young | I wanna hold her hand | And show her some beauty | Before this damage is done."
On July 8th Quinn Edith Rehm was born. She is everything. I've written repeatedly on social media tying in the miracle of her existence in the scope of the health problems Devin and I had experienced.

Getting ready for her arrival I had an appointment with my GP for a TDAP shot shortly after the MRI. She put me in touch with an eye doctor. Eventually this doctor referred me to another more specialized doctor and this doctor referred me to yet another more specialized. The last of these eventually got me on the calendar for a corrective surgery. At this point I was very far removed from the team of doctors who had been treating the tumor and this felt strange. The conclusive MRI from June had been giving me the confidence to push forward with this track - the double vision had to have been caused by my tumor treatment but the tumor itself was quite small and had not changed. My frustration over wearing an eye patch every day also kept me pushing forward on this path.

Near the end of my time at Duke in 2016 they had referred me to an Atlanta-based neuro-ophthalmologist who I'd seen 3-4 times that year to monitor my vision in the aftermath of the tumor resection and radiation. My vision was good and eventually I'd stopped scheduling appointments with her. With the vision-related surgery looming I scheduled an appointment with her for a second opinion of sorts. She wanted an MRI so we could get to real source of the issue. I was somewhat opposed to this - I'd had the MRI in June and my symptoms had not changed and MRIs are extremely expensive. Because of the presence of my programmable shunt installed by my Kennestone neurosurgeon Dr. Benedict, I have to follow every MRI with a shunt check-up as the magnets in an MRI always change the settings. This is not physically uncomfortable in any way but it makes MRIs extra difficult for me to coordinate. This MRI occurred last week.

Dr. Benedict himself reprogrammed my shunt this time. He had not ordered the MRI but knowing I'd had one in the same building he pulled it up and began comparing to past MRIs. He wanted Duke to take a look. I quickly made sure they were sent a copy of the scans. My Duke oncologist later told me that she'd actually received my scans while heading to a weekly tumor board meeting in which they review tumors to collectively discuss and make plans. She showed my new scans to the board. She sent them to Superneurosurgeon(tm). Thoroughly vetted, she called me.

"Your tumor is recurrent" was somehow as hard or harder to hear than the initial diagnosis in late 2015. I was naive in November 2015 - I didn't know what I didn't know. In 2019 I'm practically an expert. This is very bad. It is more or less the same size it was when I was first diagnosed, with some tissue not necessarily being tumor, but dead cells from radiation.

They want me to come to Duke to discuss new treatment options. We're leaving Monday afternoon. The have already told me there are two treatment 'tracks' in play: another brain surgery at Duke (via Superneurosurgeon) to remove part of the tumor followed by chemotherapy OR chemotherapy alone. There are different types of chemo so I quickly verified that this is the same chemo one commonly sees where vomiting and hairloss are common. Devastating. I am writing this in a state of devastation.

There is a lot I do not know at this point. I do not know whether this means the grade of the tumor is different (the scale of benign to malignant), I do not know why this is happening or what I can change so it freaking stops happening, I do not know whether I will miss a substantial amount of work (whether I can continue to work during treatments), I do not know what this will cost us or how we would handle that if insurance does not cover it all (in fairness I think it probably will), I do not know why my symptoms are the same as they were nine months ago or why the prior MRI did not show this, I do not know what this will do to my life expectancy, I do not know whether it's technically even the same tumor. I have a long list of questions for my Duke doctors and if you are reading this before Tuesday 3/12/19 then I welcome and encourage you to send me anything you would ask them if you were in my position.

I know I do not want to go through chemo. I know I do not want to put my family through more of this. I know I will never be completely rid of it. I also know I will do whatever I have to do in order to be here for Quinn and Devin and maybe nothing else matters.

My anxiety has limited my ability to see a humorous side of this, the side which I've otherwise shared on this blog. I'm tempted to elaborate on all of the thoughts which have crossed my mind since hearing of this but I don't know whether I can. That said, I do not want to end on a drab note so I will share this photo which shows exactly how I will look after chemo hair loss but before my vision is corrected:

 

Prayers and well wishes are most appreciated right now. I will write an update once I have met with the Duke team and have the mental energy to do so.