Blogging in B Minor

Just an update on the personal front. The River of Faith album is out there as you know – thanks to those of you who have purchased copies – I’m glad I can share my music with you. It really means a lot to me – I hope you are enjoying the music and the genesis of the songwriting.

As you know this blog has transformed itself into a personal update forum for the foreseeable future! Frankly, it’s actually working out quite well in this capacity so I appreciate everyone who has been using this as a means to obtain the information. It saves a lot of time given everything that is going on.

Again, we cannot thank everyone enough out there for the prayers and support! We are hanging in there. Things are challenging of course but we are inspired by everyone’s thoughts and prayers, the support we are receiving and everything we are pursuing in our strategy. Rachael is doing well and getting rest. It’s a foregone conclusion now that our son will be delivered via scheduled c-section. This will be scheduled for the week of July 22nd most likely.

As for me, I have had complications in the way of focal seizures. It’s something that occurs in 1 of 3 brain tumor patients and is either a complication of surgery or could be something else as a result of the tumor itself. Time will tell. A seizure is something that should be defined because many people have only one vision in their minds. A seizure can be as mild as a marching “numbness” in your hand or wrist to something as strong as loss of muscle control and all feeling/motor function on a side of your body. Last Wednesday I had an issue with my left shoulder – I couldn’t straighten my arm out to my side and then my shoulder started becoming irritated for lack of a better term. The short of it is my entire left arm and left leg became involved and I lost control of motor function – the most frustrating thing EVER!! Mine are referred to as simple partial seizures.

I knew going into this what I could be dealing with in terms of neurological deficits, complications and potential issues. We had the doctor on the phone and tried to deal with it medicinally but after awhile but had to go to the hospital. There they could IV something called Ativan that calms everything down right away. Since then, I’ve had 2-3 “breakthrough” seizures every day – talk about frustrating. These, however, are nothing like the incident on Wednesday. My shoulder will become irritated, I will relax myself and within 30 seconds or so it will resolve. Call it learning to deal with it! I have to say though it is frustrating and it’s getting me down. I have a great Neurologist who is working with me on the Rx’s necessary to manage it. The theory is brain swelling from surgery causes it and I’m currently tapering off of steroid medication that controls brain swelling, which is important to do as well. Kind of a catch 22.

The other bit of news is I had an appointment with my Radiation Oncologist today. You know, all of it is surreal at times. Sitting in a Radiation Oncologist’s office was, well, odd. No, it’s not like a feeling of I don’t deserve this or anything like that. It’s just a feeling of how did I get here? And how sobering it is that I am sitting here and sizing up what I have to navigate. Neurologists, surgeons, oncologists, radiation specialists, chemotherapists, neuro-pathologists……and you have to know about each of these specialists, what they do, what they know about you, how they can help you, how to HELP them help you and how to arm yourself with questions and research that allow you to be an advocate for yourself. SIGH.

Anyway, this appointment was like most of them. I have never met with a radiation oncologist. He was excellent, as are all of the doctors at the Neuroscience Institute here in Sacramento. We talked about my case and I found that the final pathology is a mixed glioma – the tumor consists of both astrocyte cells and oligo cells and is called an Oligoastrocytoma and has been graded as a grade 3 in my case. It’s a malignant tumor. Aside from that, we will move forward with partial brain radiation therapy at a high dose called 60GY – this is considered both a curative and adjuvant dose. In conjuction with this, I will have a chemotherapy called Temodar which was originally found to be very effective against grade 4 GBMs but has more recently proven to be effective against this type of Grade 3 tumor and variations including mixed gliomas. This will be administered concurrently with the radiation. The goal of course is to stop growth altogether, shrink it and ultimately eliminate it along with radiation. It has happened although realistically we are praying for control and management. The meeting was good – any neurological deficits resulting from radiation that I was worried about are not a concern – we can treat this.

It’s late but we’re marching on. I won’t lie – this is hard. Really hard. Our days are filled with ups and downs. Trying to juggle this, planning for the arrival of our son, keeping our soon to be 5-year-old son Aidan active and filled up – not to mention insulating him from a lot of this, controlling the revolving door of supportive family and friends and just this crazy life we have been thrown into is not something we can keep pace with but we don’t have a choice. And frankly, much of this is what we need but it’s a lot to handle.

God is at the wheel – that’s all I can say.

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