Post-operative treatment at the Barrow Neurological Institute is underway (we switched my care from Mayo after their neurosurgeons didn't think they could safely remove the tumor). This latest round of treatment got off to a bit of a rocky start as my body got hit with the trifecta of an extreme diet change, radiation and chemotherapy all at the same time. On Wednesday afternoon, I started a strict ketogenic diet under the supervision of the oncology dietician. After drinking only gross shakes Wednesday night and all day Thursday, my body went into ketosis before the GammaKnife procedure on Friday. (The dietician said that that was the fastest she's ever seen anyone go into ketosis -- it usually it takes a week or at least 3-4 days).
On Friday, Jordan and I woke up at 4:30 a.m. for the GammaKnife radiosurgery. After the usual pre-surgery screening, they wheeled me to the GammaKnife center where they screwed a frame onto my skull. Then they did an MRI. The doctors (neurosurgeon, neuro-radiologist, and physicist) then planned the procedure for about the next hour and a half while I watched basketball with the head frame on. It reminded me of wearing a lacrosse helmet. The procedure took a little over an hour. For the procedure, they attach the head frame to the machine and move you into a tube, similar to an MRI. Here is a good video overview if you're interested in the nitty gritty. Unless and until there is a recurrence, this is all the radiation I will be getting.
On Friday night, my head was killing from the head frame pin sites. Right before bedtime, I started having involuntary twitches in my right leg and hand, probably from brain swelling due to the GammaKnife. They didn't prescribe me steroids (which keeps brain swelling down) after the procedure because I was doing fine. I decided if the twitching kept acting up, I would call so they could give me the prescription. With my head killing and my right side spazzing out, I had to start my temozolomide chemotherapy pills. To top it off, Thomas was having a horrible night. Unsurprisingly, I hardly slept at all that night. I couldn't tell if it was my headache, nausea from the chemotherapy pills, nausea from the rapid ascent into ketosis, my twitches or Tommy's screams that were keeping me up.
Saturday was better. No more twitches. The headache subsided. I was able to get a nap in the morning and watch basketball most of the day. Despite the improvements, I did feel uneasy and nauseous all day. In the middle of dinner, I threw up pretty much everything I had eaten for the past day and a half. That was the turning point. I felt immediately better. The dietician told me to take a step back from the diet for that night. Sunday I felt good enough to get back on the diet and was able to stay in ketosis. That day I rested and did nothing else.
Each day gets a little bit better. Today I was back to shooting baskets. A line from an Alejandro Sanz song has been running through my head lately: "despues de la tormenta siempre llega la calma." (After the storm the calm always arrives). After each little tempest we've always had a period of calm. Starting treatment has been the latest little storm, and fortunately I'm recovering beautifully. I attribute it to all the kind thoughts and prayers on my behalf. Words cannot express how humbled and grateful I am for all the support our family has received.
8 comments:
So happy to hear that you are feeling better. That is too bad you didn't get any sleep on Friday night. Jake you are putting up quite the fight and I am so thankful you are! I love your sweet family and hope to witness a mighty miracle your/our behalf!
Dear Jordan and Jake: I'm thinking of you and your family. I have a cousin our age going through the exact same thing and I know how hard this is. Please let me know if I can help in any way. Allan Boggio.
Thanks for your updates, Jordan and Jacob. We think about you all the time. I'm so sorry for the hell you're going through both physically and emotionally. We're praying for effective treatments and emotional strength for you. You are two of the people I look up to the most.
Thanks for the update, Jake. I can't believe you went from the surgery to shooting hoops in just a few days. You are amazing! We pray for you everyday.
So sorry to hear all the difficulty with the treatments and then getting no sleep. We are constantly thinking and praying for you. We love you!
I'm so glad that the calm has come. May it last a long, long time.
I appreciate you putting yourself out there and writing down your experience. Even though I have never met you, you and your family are in my prayers daily.
I've been thinking of you a lot lately. I have fasted and prayed for you and your family along with my husband and children. We have seen so many miracles in our immediate family, especially recently. I know that God will continue to send miracles and mercy your way. I love you. Please take care of Jordan and insist she takes a break from everyone. She is a great companion.
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