I wasn’t able to create Brain Matters’ fundraiser last year because I had several physical challenges, and my mom had just died after having a “massive stroke” the year before. This year I had another dose of challenges, but even so I was determined that Brain Matters WOULD create our annual FALL fundraising event. Brain Matters is about strength, that does not just come from the part that’s physical, but our indominable will. Keep on, keepin’ on!
On April 1st of this year, my dog Max who had hung in there a little more than a year after my mom died (so grateful for that); if you read my previous blog you know Max had a similar “strokelike” event three months after my mom had hers. Max was so strong I thought he would live forever…no that’s not true, I HOPED he would live forever. Such an enormous loss! My family had adopted Max just shortly after I had finished treatment for my brain tumor at Mass General Hospital, he was 15 ½ when he died. I have had a number of pets in my life, loved them all, but Max was special. He was so athletic, so funny…so so smart, and so beautiful. I will miss him every day!
I also have spent probably over 20 appointments this year going to several different doctors trying to fix what has been my long-standing on-going sinus/mucus problem, to only finally be told I have chronic sinusitis. Now after many years including this one, I now know I will be sinus rinsing myself every day and every night…as I have for many years already. I will also take antibiotics several times a year when it gets so bad nothing else seems to be managing the problem. And so it goes! I can check it off my list of to-do’s though. I’m still here!
I spent almost as much time trying to find the right medication for what has been diagnosed as osteoporosis this year. Busy year! This may be a side effect of my radiation treatment, or maybe the hydrocortisone which I take for one of the ailments I suffer from that same radiation…eeney, meeney, miney, moe. The radiation gave me something called osteoradionecrosis in my left ear canal. Apparently one of the side effects of the various medicines for osteoporosis can give you a relative side effect called osteonecrosis. It could enhance something that already has a head start. Which helpful medicine to chose to help that condition? It’s a survivor puzzle. I’m trying to find a doctor to help decide. Better to be here deciding than not.
A big-time consuming issue that I’m trying to figure out the best solution for…is my voice and my left paralyzed vocal cord. Do I want to settle with my hoarse but what might not be considered a talkable voice? It’s not what it used to be…but it’s a voice. I used to do SO much talking. I liked talking, now it bothers me when people on the phone say: “I’m sorry we must have a bad connection, can you repeat that?”. I know it’s not the connection, it’s MY voice. It’s also upsetting when my husband who I’ve known for over 2 ½ times longer than I haven’t know him-and yes he may be getting hard of hearing…asks for me to repeat almost everything it is I say. Do I let the thought of my old voice go? Can I embrace my new hoarse voice? It’s not easy. I have been thinking and researching about how to improve what voice I have. The mistakes I’ve made in the past with doctors, have helped me learn how to handle myself. Yes, I still would like to improve my voice but I’m getting older. I have quite a medical history and I’m feeling that doctors are learning through me, sometimes more than I’m learning through them and that often I’m an experiment. I don’t want to make my voice worse. Trying to solve my problems can be exhausting. Long ago a day used to be a day. I wish I could settle on what I have, but it’s still a challenge for me to just settle. It’s not who I am. I probably wouldn’t be here if it were so. That voice decision WILL come to me. “Keep on keepin’ on!” May next year be better than this one. We’re moving in a positive direction in that we’re able to create our Brain Matters fundraiser. Yayy!
We so appreciate your helping us to make a difference promoting medical research for brain cancer patients as well as supporting their undergoing treatments.I’m “still standing”…many others are not as lucky. Because brain cancer is relatively uncommon compared to other cancers, there isn’t enough attention given to the need for more fundraising and research.
Please check out our link to our Fall 2024 Charitybuzz events on our Facebook page https://www.facebook.com/BrainMattersOrg on October 2nd. If you want to DONATE to BRAIN MATTERS directly, just CLICK HERE! Thank you in advance!
SEP
2024