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.

Almost Home

I am now exactly 90% done with my radiation treatments. The proverbial finish line is in sight. As far as I know everything has gone smoothly. My doctor (the radiation oncologist) tells me they'd probably eliminated 99.9% of the tumor in the first three weeks and that the final few weeks of treatment exist to kill the surrounding area as to prevent the tumor from returning. As those of you who are connected with me on Facebook have already seen he has provided me with the below letter authorizing my return to work in a few weeks. I do not mind the treatments themselves and Durham has been pretty great but more than ever I am very tired and eager to be done with this entire experience.

As I noted in a previous post I do not generally feel the radiation itself. My treatments consist of a daily visit to the Duke Cancer Center where they escort me back to a machine called a linear accelerator (check it out below). I lay down on a bed and they affix my custom mask as to keep my head from moving, effectively bolting me in to the bed. The radiation therapist who administers the treatment then leaves the room and I sit there for around 10 minutes while the machine beeps and buzzes. The radiation therapist then returns, removes my mask and I'm on my way. I've now had two separate hellacious three-hour MRIs since this process began so the 10-minute treatments feel like a breeze.

Despite the relative painlessness of the treatments there are a few side effects I've experienced. I've been feeling the fatigue my doctor warned me about. It's hard to complain though, as I get the sense from talking to other patients that my fatigue is less severe than the fatigue most of them endure. The scar on the back of my head which had felt painless for several weeks has become sensitive to the touch and is sometimes sore and/or itchy.

The nausea I mentioned in a previous post is occasionally present though they've prescribed me a steroid which has helped a lot except that it makes me want to eat more and all I want to do is lose some of the weight I've tacked on since this started (mainly recovering from the surgeries). The fatigue is the worst of the symptoms - it's strange to want to sleep nearly all the time and to go so long without energy or motivation to do many things. This is probably also why it has been awhile since I last posted to this blog. I'm also inclined to blame any and all unusual pains and sensations on the radiation however unrelated or coincidental they are.

Besides sleeping I have kept busy in Durham. Devin has been here most of the time and I am happy to report we have not yet murdered one another. I'll save the details of what I've done in Durham for another post as it might quadruple the size of this one, but for a quick summary: attended a Carolina Hurricanes hockey game, attended a Durham Bulls baseball game, wrote extensively in my vinyl record notebook, read(ing) a few books, walked/exercised daily, had a visit from my brother & his wife, had a visit from my parents, had a visit from 1-2 friends, inexplicably eclipsed 5,000 followers on my Instagram account, checked out a few local record stores and checked out a few local restaurants. For the past 3+ weeks we've been staying at a place which exists exclusively for cancer patients called The Caring House. It has been pretty great - the support community in the Durham area for people like myself is all around impressive.

Devin, meanwhile, has begun a really cool project hand making bracelets and similar beaded items with metal stamping in support of me/us through my health craziness. She set up an Etsy page to sell them which can be found by clicking here. As I mentioned on Facebook awhile back this is a great opportunity to receive something nice in return for your financial support. She has some new designs up on the Etsy page since we first announced it including some which could be good for Mother's Day, children, couples and grandparents so check that out. She can make personalized charms with dates, names or whatever you want and she doesn't charge much relative to the amount of effort it takes to make them. I like the ones which say #fubkp but there are several other options (and I'm biased). If you're not interested in jewelry and keychains and the like but want to help we still have the YouCaring page which can be found by clicking here.

As usual I am exhausted and fighting to keep the negativity which accompanies this feeling out of this post so I think I'll stop here for now. I finish the radiation treatment on Friday (!!!) and will post again after that, hopefully discussing my next steps before we can officially call this over. Thanks, as always, for reading.

Durham Rock City

Greetings from Durham, NC... aka Bull City... aka Title Town (my descriptor)... aka Rum Ham City (Devin's descriptor)... aka home, for now. We've been here since Sunday night (3/13) and I've completed my first three radiation treatments. Only 27 to go before I've achieved my destiny and have become Electro:

The weather was very stormy for the majority of our ride from Atlanta but we managed to avoid an incredible 130-car accident on our route. Click here if you want to learn more about this absurd incident or if you don't believe me and require proof. It was historic. The local news is still talking about it.
On Sunday night we checked in to a hotel for one night which set our six-weeks off on a, umm, an interesting note. Devin noticed the trashcan still had trash in it and I spotted a few stray hairs on the walls of the shower. Oh well, we thought, a lazy housekeeper but nothing we couldn't handle. We were packing up to leave the next morning when I discovered something interesting peeking out from under the skirt of the bed: a snakeskin raincoat. And it wasn't in a wrapper. Yes, seriously.

Upon checkout we politely suggested they pay extra attention to cleaning our room and explained why we felt compelled to make this suggestion. They volunteered a full refund which is why I'm not name-dropping the hotel chain. I assume the gent tent was used considering it was out of its wrapper on a hotel room floor but I didn't take the time to do a forensic analysis. I was also more concerned about the hole I'd left in the ceiling after having jumped 10+ feet in the air when I first discovered it.

The fear subsided when we checked in to the Extended Stay hotel from which I'm writing this as the clerk revealed our friends Justin and Tyler had somehow discovered where we were staying and had fully paid for our two weeks here (Thanks again, gentlemen!). There's a good chance I will develop carpal tunnel from writing "thank you" notes over the next few weeks in response to all of the thoughtful gestures we have received. Glass half full: I'd much rather keep a blog chronicling my struggles with carpal tunnel than a brain tumor. Once we got in the room I received a phone call stating we'd been approved for a grant covering part of our hotel stay at the place we're going for the final four weeks of our time in Durham. The grant is great on its own, but I'm more excited to finally have something in writing which proves I'm poor enough to qualify for a financial aid grant.

Our good fortune with financial matters did not last long. On the way back from my second treatment the serpentine belt on my car broke which lead to overheating, a loss of power steering and a loss of output from my alternator. With help from my dad (via phone) we were quickly able to identify the source of the problems and then find a mechanic who had it repaired by the end of the day. It was a setback of a few hundred bucks but I was more relieved that we were never stranded on a major road and that we were able to nurse it to a mechanic with relative ease. I don't have anything witty to say about this experience so here's a link to my 14th annual college basketball Tournament Challenge bracket group for those who are reading this before Thursday 3/17 at Noon and want to participate. Enter "gthc" when prompted for a password. It's free to enter and you can submit up to 5 different brackets but there are no prizes for winning unless you count the lifelong joy which comes from beating me at this. This is a joy felt by literally everyone who enters so, you know, cherish it. Contrary to popular belief I will not be picking Duke to win it all this year. Next year, though, next year I'm definitely picking them.

The radiation treatments themselves have been quick and painless. On the first day I didn't even know I had received my treatment until the Radiation Therapist who administered it told me after the fact. The Radiation Therapy team at Duke Medical has been really great. The closest thing I've had to a side effect so far was mild nausea after one of the treatments but even this might have been coincidental. I have no idea what kind of impact it has had on BKP so far but I'll be seeing my doctor every Friday and I suspect he will know. Regardless, I should have ample time to amass a list of questions each week so I can bombard him with important things like "where am I?" and "why is my head still enormous?" and "where am I now?"

In closing, if you're still not sure what I meant by "snakeskin raincoat" or "gent tent" then, uhh, let me Google that for you.

Groundhog Day

Ugh. Again my optimism has been dashed by a hard reality. I thought I would be writing today to say that I was returning to work, returning to normalcy and that I was done visiting Duke on a non-basketball basis. Unfortunately I am not able to say this and it no longer feels close. It was more like Groundhog Day and the rodent apparently saw its shadow.

In retrospect there were signs... Superneurosurgeon scheduled an appointment for me to meet with a neuro-oncologist before he ever saw the results of the MRI we were to review on my latest visit. The MRI showed plenty of leftover tumor - enough to make the Duke folks discuss the possibility of another operation and chemotherapy. Fortunately these possibilities were eliminated (for now). It's easy to see in the below MRI that Superneurosurgeon got all of the tumor above the cavity in my brain where the rest of it now sits.

The leftover tumor happens to be directly on the brain stem so the risk would be very high even if Superneurosurgeon were able to reach the cavity. So this leaves radiation - a possibility I knew of ahead of my recent doctors visits and one which didn't necessarily scare me. I do not currently fear the radiation treatment itself but my new radiologist (who happens to be Duke Medicine's Clinical Director of Radiation Oncology so... Superradiologist?) insists I must receive the treatment under his supervision at Duke and with Duke's $10million radiation machine which can perform MRIs while the radiation is being administered. It's a daily treatment 5 days per week for 6+ weeks. This news hit me hard. I did not want this.

For the past few days (with a short interruption last weekend to visit Statesboro to celebrate my brother's 30th birthday... Happy Birthday, Kyle!) we have been preparing to move to Durham where we will live for at least six weeks. To help soften the blow of this news I've been reminding myself that Durham is a mostly cool place in which I'll have 23 hours per day to spend however I want. Sure, it might cost us a fortune to be in a hotel and live away from home... and I'll be getting my head zapped over and over... but I'll have my wife in town with me for most of my time there and I'm happy about that. Plus I'm hoping by the time it's all over I'll develop some sort of super power under the logic that Peter Parker was bit by a radioactive spider and I will be bit by what I assume is a radioactive laser.

One of the few perks of having to get radiation over a relatively long period is that I get to wear the above pictured custom-fitted mask to keep me from moving during my treatments. I was fitted for it before leaving Duke and it's made of hard plastic. I was kind of disappointed during the mask/helmet fitting as I expected my enormous head to be too large for their warm plastic mold. Alas, it didn't even warrant a comment from the nurses. My excitement for this mask is not because it is comfortable and fashionable (it's neither comfortable nor fashionable) but because I get to keep it after my treatment is finished and therefore I get to use it to scare my dog and cat.

We leave for Durham on Sunday, 3/13 and intend to be back in Marietta for Easter weekend. After that I am not sure when I will be back but the six week treatment period ends on 4/22 and I'm strongly hoping no extension is required. One of the most common side effects of such radiation is significant fatigue so it's difficult to say what I will be able to do and when I will be able to return to normalcy. I have a follow up appointment with my Duke neuro-oncologist in early May and I'm guessing I'll be out of commission until then (at least).
We've arranged a top notch house/pet sitter (thanks Carol!) so thankfully we will not have to worry about these things. We will be staying in an Extended Stay hotel for the first two weeks and have another place booked for the rest of our time which we may end up switching if a more spacious, less costly opportunity arises. Please pray for me because, in addition to everything I've just mentioned, I will be cooped up in a small room with Devin for six weeks. And please pray twice as much for Devin for the same reason.

What's new? MRIs, doctors visits, nearing the end of recovery, etc.

It has now been over a month since I last wrote in this space. I have not been especially motivated to write as there has not been much to talk about on the tumor front and I have a hard time subjecting folks to my ramblings when there are no major changes or interesting developments. Fortunately we are now nearing a big day in the BKP saga and motivation has returned.

Last Monday (2/22) I had an MRI which, once reviewed by the proper authorities, will tell us how my recovery is going and what's next for me. On Monday 2/29 Devin and I are driving back up to Duke and I have an appointment scheduled with Superneurosurgeon on Tuesday 3/1. I don't know exactly what this appointment will cover but I know we're going to review the aforementioned MRI with Superneurosurgeon and I suspect the results of this will be crucial. Ideally the MRI will show no remaining tumor and I will be able to go back to work and resume normal life. If there was some remaining tumor from the operation or some growth since the operation it's possible that I could require radiation. I'm sure there are other potential outcomes, too. Regardless, I know I will need MRIs every so often for the next several years so I do not expect the doctor to pronounce BKP dead, nor will I need him to do this to consider the visit a success.

The best case scenario, as far as I know right now, is that the tumor is mostly gone and I do not require any radiation. I'm also hoping the doctor gives me the go-ahead to return to work and resume all regular activities. If he does I expect to be back on Monday 3/7. I've already resumed driving relatively short distances and this has gone fine. In fact, I feel mostly normal except my vision is still sometimes blurry. The blurred vision was actually a big risk of the tumor resection surgery (the surgery at Duke) but I came out of it with my vision the same as before the surgery. It's usually manageable - more of an annoyance than an impediment - but some days it really wears on me. I'm hoping the doctor can provide some guidance on dealing with this or fixing it. To this point the only advice I've gotten has been to avoid any unnecessary stress so I've responded by not opening my medical bills.

The worst case scenario, as far as I know right now, is that the doctor took off his watch during the surgery, left the watch in my head and really wants it back.

Anyways, generally speaking I've been doing well. I just want to get past the blurry vision and get back to work. I feel like I'm slightly more recovered every day and by my own measure I'm probably nearly done with recovery. Devin and I went for a hike last weekend with some friends which was more of a challenge than I anticipated but proved valuable in helping me begin to get back in to shape after a few months on the couch. It seems like I have been sleeping a ton lately: 9-10 hours each night, sometimes even more. I don't mind this because I'm trying to let my body tell me what it needs and just rest as much as I can. It's possible that the tumor coming out of the pineal region of my brain has something to do with this because the pineal gland regulates sleep but for the most part my sleep patterns have been the same, just longer. The scar from my latest surgery is the most significant of the three and is healing nicely. It looks healthy, but more importantly it looks bad ass.

I'll wrap this up for now and I'll have another blog post after my meeting with Superneurosurgeon next week but I just want to reiterate how grateful I am for everyone for the support of all shapes and sizes over the past few months. Virtually everyone has been awesome to me since all of this started and I feel you should know this whole experience has strengthened my opinion of human decency/humanity. On the YouCaring site I mentioned in this blog in the January 13th post (https://www.youcaring.com/paul-rehm-502641) I'm already nearly at 50% of my goal. When I add in the checks people have sent outside of YouCaring it's even closer. I'm going to attempt to respond to each of you personally but for now I just want to thank everyone for the gifts of food, activities, money, support/backup at work, support of Devin and literally hundreds of other things.

Many of you have heard me say this and I'll probably end up saying it several more times but since I haven't yet put it in writing: if and when I get though this ordeal with a clean bill of health I will only be able to look back at all of this as a positive experience which bought me closer to my friends and family. I am sincerely so, so grateful.