Monday I had my own doctor's appointment, with a doctor who knows my entire family and our fight these last 16 months. He, of course, asked about Dad, how Mom was handling everything and we discussed Dad's current treatment. I started rambling on, started talking about how the anticipation of the MRI results was probably the cause of my high blood pressure (or the fact that I consider myself a high stress individual), and I started talking about the statistics- the statistics that show the tumor SHOULD be back.
I'm no doctor. I actually know very little about most medical terms or procedures, although I've become somewhat knowledgeable in brain cancer treatments, as I find myself spending hours reading recent clinical trials and studies showing huge strides in brain cancer treatment. So, there are times when I read the statistics, statistics that say, "The recurrence rate for Glioblastomas is near 100%, with an average time to recurrence of 6 to 7 months." At 16 months post diagnosis, I am well aware recurrence SHOULD have already occurred.
But this doctor that I visited with just listened to my statistics, he listened as I shared the average time to recurrence, he listened as I shared the average lifespan of someone diagnosed with Glioblastoma, and then, he just calmly said- "Yeah, but those are just statistics. Those numbers have nothing to do with the patient. Those numbers really don't mean much."
Maybe he should have taken my blood pressure after he told me that, as I immediately felt calm. I immediately felt like someone, who knows all too well medical statistics, didn't seem to really care too much for what statistics showed. I'm assuming because in his 25+ years of being a doctor, he's seen statistics not mean too much, and for some reason, that is extremely comforting.
Dad's MRI yesterday appeared to look better than it did following his surgery and radiation. BETTER! We were in shock. We never anticipated the MRI's to appear better, as we've always said that if this is as good as it gets, then we can fully accept that. The MRI's also show that the Avastin treatment is in fact working, which is also extremely comforting after reading so many different studies with inconclusive finding if Avastin is able to treat Glioblastomas. We were overcome with relief, and for the first time, Dad seemed to have confidence in his MRI results.
We are so blessed. We've come so far in Dad's fight, and although the MRI did appear to look good, we still continue our treatment plan- chemotherapy and Avastin-and another MRI in about 6-8 weeks.
As blessed as we are, know that we still struggle with this new normal. A new normal for all of us. Dad still struggles with understanding why his speech and memory will never be the way they were before. We talked last night and discussed this struggle, we talked about the damage from the surgery, the radiation, and the bleed he had following the surgery. We talked about understanding our new normal, and sharing with Dad how far we've come on this journey.
I remember the week following Dad's return from the hospital was extremely difficult. There were many days were I would sit down with him and have the exact same conversation, over and over again, "Dad you had a tumor in your brain, it's cancer. They had to remove the tumor." And again I would have to say, "Yes Dad, you have brain cancer."
Each time, it was like I was telling him this information for the first time. Emotionally it was difficult for both him and I, but emotionally I didn't get to show fear or apprehension of the situation- instead I repeated the conversation over to him, as if it was the first time I was telling him, and eventually, his memory became better and he started to remember and understand.
It's amazing to think all of that was 16 months ago, although it truly feels like a lifetime ago. After receiving our wonderful news, I immediately emailed Lanie Rose, the founder of the Dr. Marnie Rose Foundation, and the mother to the late Dr. Marnie Rose. I wanted to share with her how well Dad was doing, to help validate that her fight to bring funding and awareness to brain cancer was in fact working! She responded in such a warm and comforting way, and again, made me realize how blessed we are to have found such a wonderful foundation:
"I am so excited to hear that wonderful news!!! It just keeps getting better and better. Tell your Dad he brightened my day. I send my love to all of you."
Emails like that. Hugs at other brain cancer runs. Those reasons just add to why I love to support such a wonderful foundation and continue to want others to participate in the 'Run For The Rose'. Since finding the Dr. Marnie Rose Foundation, we have never been alone in our fight, and they have continued to support so many others faced with the same difficult battle against brain cancer. I would love for each of you to join us on April 12, 2015 in Houston for the upcoming 'Run For The Rose', or consider making a donation to help support brain cancer research and treatment. Dad is living proof of the strides and progress that has been made in the brain cancer community, and I am so proud to help support continued progress. Visit our team page for more information on how to join the run, or to make a donation!
http://runfortherose.racepartner.com/run-for-the-rose/bthobraincancer
Thank you all for your continued love and support, and continue praying, as we continue fighting to BTHO Brain Cancer!
Whenever there is a loved one diagnosed with cancer, the lives of the whole family change. Appointments increase, stress increases and worry increases. The Dr. Marnie Rose Foundation sounds as though they are the blessing your family needed to bring your father through his difficult road. Hope and love should not be underestimated, because with the both, anything is truly possible.
ReplyDeleteKacey @ Glendale MRI