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.