Throughout my life, I have always tried to be calm and wise (hopefully?) when the chips are down. In the times when the fur is flying, when you are flaming mad, irrationally angry, or when someone you love is hurt or hurting, I have always found it helpful not to react in the moment. Letting some time pass allows some much needed perspective to shine its light, gives you a moment to let the bad energy flow out and just take a deep breath. This isn't always possible, of course, but most of the time it is, and I believe it has saved me from reacting badly more times than I can count.
This medical journey with Russ has been fraught with ups and downs. At times, racing with energy and peppered with big frightening decisions, and at times, slower and more contemplative where thankfully each decision is not a permanent demarcation of what came before and what comes after. Things are finally slowing down, and we are finding some routine again where for many months there has been none.
We are three weeks since Russ' brain tumor was removed, and fourteen weeks since his brain bled on that fateful day in November. He made huge progress in gaining back physical and cognitive function after his bleed, and then lost a lot of it again after surgery. He has had holes in his head, his stomach, electrodes placed all over his head and body, catheters, feeding tubes, stitches, bruises, myriad IVs, medications and therapies. Throughout it all he has remained steadfast, trusting, calm and positive. It is utterly amazing to me how he handles everything that has happened to him with such composure and peace. He has lost a great deal of control over things we all take for granted, and yet he trusts in knowing that he, and we, will get through this and make the most of our opportunities to heal. He and I are aligned in understanding that attitude and approach can be an invaluable asset in carrying you through all of life's experiences.
Our next big hurdle is dealing with Russ' brain dural arteriovenous fistula (BDAVF). This tiny little cluster of vessels, no bigger than 1/2 the size of a small pinky finger tip, has wreaked havoc on our lives in ways we had not imagined. The little bastard, who was not welcome in the first place, has got to go.
For those of you following Russ' health journey, you will recall we didn't know the origin of Russ' stroke was a fistula, we thought it was an arteriovenous malformation (AVM) and that it would be eradicated with surgery. All of that changed three weeks ago, when a specific procedure was performed in preparation for the AVM removal surgery. During this procedure, the doctor discovered it was in fact a fistula, and it's location being in between the brain stem and the cerebellum and on the covering of that part of his brain (the dura) makes it inoperable. It is even more complicated than that, actually, but those details aren't really important. What is important, is that the fistula is inoperable as the procedure would carry a more than 25% chance of a catastrophic outcome. Things like motor functions, coordination, breathing, temperature regulation, and whole host of other functions we cannot or would not want to live without are centered in either the cerebellum or brain stem. Surgery is vetoed.
With a surgical solution no longer an option, we are going to radiate the BDAVF. As with anything, there is a list of pros and cons associated with this procedure. On the plus side, it is non invasive, it is a one time thing, and there are little to no side effects. On the challenging side, there will be multiple arcs of radiation passing through Russ' brain, the procedure takes anywhere from 2 months to two years to take effect, and there is no guarantee this treatment will be effective. Even given all of that, the decision was basically made for us as we do not want to live with the risk of another brain bleed. We need to do what we can to eradicate the cause. So, radiation here we come.
A physician called a radiation oncologist performs the procedure, after a number of pre-procedure activities are completed. We met with our RO on Monday of this week where the steps and process were explained to us. He will work with one of Russ' neurosurgeons (the same amazing doctor who found that it was a fistula instead of an AVM, and who embolized Russ' tumor in preparation for surgical removal), and together they will execute a series of tests to create three-dimensional images and brain mapping to determine the exact coordinates of Russ' fistula. Then a mold of Russ' head will be created which will be used during the radiation procedure to keep his head steady and to physically pinpoint coordinates. Lastly, the radiation procedure will be executed, using six to ten arcs of radiation directed at various angles and differing planes across his head, where each "ray" will terminate at the fistula. There is a complex machine that delivers the radiation with extreme precision. Explaining what happens in layman's terms, a single ray is not toxic enough to cause significant ongoing damage to the path the radiation passes through, but the culmination of multiple arcs of radiation are toxic enough to cause damage to the fistula. The fistula is the common end point for each of the multiple arcs. The goal is for the fistula itself to be eradicated via cell and tissue death and simply carried away by the body's normal detoxification processes. The treatment is more effective when the target is small (yay us), and it is possible that the cells being weakened (which we know from Russ' multiple bleeding events) might make them even more susceptible to the radiation's toxicity. Should you wish to join us, our visualization for this is the fistula being zapped, crippled and shriveling, and dying off quickly, so much so that we WILL see results in that first progress check at three months.
Russ will have this procedure on March 16th, after we complete all the pre-procedure tasks. And once the radiation is delivered, there is nothing for us to do but wait. He will have a CT angiogram at three months where we will see progress to date.
In the meantime, Russ will continue therapies and keep working on strength, stamina and coordination. Vision is still one where we have to wait for more healing to occur, so we will be patient in allowing the swelling and trauma from the bleed and the surgery to settle down while we also do exercises to keep Russ' eye muscles strong and supple. There is still a lot for us to focus on, and we are thankful for the insanity and intensity starting to dull somewhat - the ride has been indescribably wild.
Onward and upward we go. Love to all...