Welcome to our CaringBridge website. We are using this to keep family and friends updated in one place. Feel free to contact me with any follow-up questions or jokes, though. This is just the basic run down of my current situation.
On July 16th, while working at Buttermilk Bake Shop, I suffered from several seizures, which resulted in a fractured and dislocated shoulder, a fractured vertebrae, lots of bruising, and ultimately the discovery of a fairly large brain tumor in my right frontal lobe. I have since had a surgery to remove the tumor, during which they were able to remove about half of the mass.
The tumor is an Astrocytoma, Grade II. Unlike other cancers, brain tumors are “graded” rather than staged, and the grade is related to the aggressiveness of the tumor, with IV being the most aggressive grade. Although my tumor is not technically considered malignant (because it can't spread to other parts of body), it is hard to get rid of completely and the concern is to keep it from spreading.
Only a portion of the tumor was removed because there are other treatment options and the surgeon did not want to cause other issues with the brain. I have a combination of low risk and higher risk factors related to the tumor which is the basis for my treatment team’s decision to treat more aggressively.
Beginning tomorrow (August 19), I will undergo 5 to 6 weeks of radiation therapy at VCU, 5 days per week with a total of 28 to 30 treatments. I will also start chemotherapy during this same, taking Temodar 7 days per week. In addition I have to fit in Physical Therapy for my shoulder for the next few months so this will be a pretty busy schedule. After I finish radiation therapy, I will continue approximately 11 months of chemotherapy, comprised of 11 to 12 periods of 5 days of chemo and 23 days off. After this initial year, I should be in remission and will be monitored quarterly by the neuro oncologists, moving to semi-annual and then annual monitoring assuming all is progressing well. The concern with this type of tumor is the spread of the tumor, and the annual monitoring will be looking for the tumor to stay the same size or decrease.
The biggest side effect of these treatments during radiation will be that I will be exhausted and will likely need a mid-day nap each day, plus perhaps some short term memory issues. The exhaustion is cumulative from the radiation treatments and will peak about 6 weeks after last radiation treatment. I will also have hair loss at the site of radiation but the chemo drug does not cause hair loss.
Caitlin and I have a zillion details to think through as she returned to work a couple weeks ago. Her boss is willing to work with her and Caitlin will likely work a reduced schedule of 32-35 hours to allow time off to assist me. Due to the seizures, I cannot drive for 6 months.
I cannot stress enough how supportive Caitlin has been the past few weeks (years). I don't know how I would be managing all of this without her, our families, and our incredible friends. Our chosen family of friends have organized rides to appointments, meals, dog walking, lawn care, and a GoFundMe fundraiser to support medical expenses and time I am missing from work. Most of you know it is difficult for me to ask for help when I need it, so I really appreciate friends who have led this charge. If you are interested and able to support the GoFundMe, here's the link:
https://www.gofundme.com/f/support-for-michael-amp-caitlin?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp+share-sheetKeep coming back for updates. I don't really want to overshare chemo details with acquaintances on social media timelines, but I'll make every effort to keep updates here brief and regular.
As treatment ramps up, I will get much more tired and likely even flakier with responding to messages of encouragement. Please send them anyway. It helps. Also, be careful asking how I am doing because I will tell you. I'm achy, usually in discomfort, and a little on the grumpy side. If you see me smiling pretending to be strong, know that is a lie and bring me a sandwich. I'm almost always hungry and forget to eat lunch usually.
Thanks,
Michael
michaelguedri@gmail.com
