• Roy

Life in August 2018

My favorite gazebo in Chapel Hill.

Dear friends,

I've never been so audacious as to send a message to all my contacts. Now the moment has come; necessity having called for it. I have often meant to send out updates regarding my precarious health situation, and now happens to be a good time to do that. I have just recently received a very promising new form of treatment often referred to as a living drug therapy. A person's own T-cells are modified to target certain expressions on the cancer cells and kill them. Great stuff, if it works right. Just Thursday there was a good piece of reporting on it from NPR, if you'd like to learn more about it.

This treatment is very new and only available in a few locations across the US for Hodgkins Lymphoma (the type of cancer I have been dealing with for more than four years now), which is why I am spending several weeks down in Chapel Hill, North Carolina. It is beautiful here, and very hot during the day. Almost everyone I have met has been extremely kind and friendly. It is a good place to be. Now that I have received the modified cells, it's a matter of waiting around for checkups to make sure I stay free of adverse side effects. I have a lot of time on my hands. My plan while staying here was to remain busy working on my music, but thanks to a certain twist of fate, that is not so easy.

I am now typing away awkwardly on some ancient and strange feeling keyboard. Weird key spacing, and massive depth to the tiny keys. I am doing this because my dear old faithful, my darling 2012 MacBook Pro has failed me. It had been showing signs of wear for some time, and now the lights have gone out.

Now that my computer is dead, the need is pressing. I am motivated to do this thing I have never done: blast a message out into the ether asking for support. Without a capable machine at my hands, I am powerless to move forward with my creative work; something that has never been more important in my life.

Normally, there would be other things I could do to remain productive, but because of my current condition my options are seriously restricted. A myriad of shifting health problems and hospital visits have kept me from seeking employment, and I have depended on the kind support of family & friends to get by. In this last year my struggle has been especially difficult. I have been afflicted by a range of physical problems that have held me back in many ways. Overall fatigue has been central to the experience. At its worst, I would become totally exhausted and out of breath from just a minute of walking on a flat surface. Swelling in the arms and legs restricted my range of motion, making activities like violin playing uncomfortable and exhausting. For months I've been draining about 400ml of fluid from tube coming out of the left side of my body. Weird stuff like that. Rounds of chemotherapy helped get many symptoms in check, but failed to defeat them.

None of this prevented me from badgering away at my work with music production - an area that has become my focus, and where I have begun to make real progress. The goal is that one day I'll be able to record and produce professional grade recordings of my own music. The most recent project I've been working on and am very excited about has been in collaboration with my sister, Mavis MacNeil. It is a series of short pieces for various instruments and voice that I hope to release as a full album before too long. A sampling of this music is now available here at my website. Whether or not you are in a position to help me get this project back up and running, I would be very touched to know you took the time to listen, and look around my recently updated website. A special page has been set up there to accept donations, to help get me through this unique time of life and back to making music as soon as possible. 

Music production is highly intensive on a computer's CPU, and will quickly overload a system that does not have enough processing power. The price-tag on such a machine is extremely daunting. For this reason I am hoping to raise $2,500; to cover the cost of a laptop that can reliably deliver many years of unrestricted music making.

I am incredibly grateful to everyone who has supported me over the years, in ways both large and small. If anyone who is inclined to make a generous donation would like to see a specific outcome, please let me know. In general I look forward to hearing any questions, thoughts or suggestions you might have in response to this.

I hope an absolutely fantastic end of summer is enjoyed by all of you. Please feel free to share this message with whomever you think may be interested.


Roy MacNeil