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.