It's been two weeks since my last update, yet somehow, it feels like at least a month has slowly passed by. I'm going to be very honest when I say that this has been an incredibly hard time. I wish I could say that each day I have started to feel a bit better, but that has not been the case. I have been facing quite the array of symptoms and side effects. It has been a daily struggle that has been at times equal parts frightening, frustrating, and humbling. Thankfully, I have an incredible medical team helping me through this and the single best caregiver anyone could ever ask for in Mike. The main thing I am also continuously reminding myself is that this is hopefully all very temporary and that everything will improve once the brain swelling continues to subside and I am able to slowly get off these medications that come with their own host of side effects. Thanksgiving day was the first time I started to feel a little bit of light at the end of this tunnel and began to feel slightly better. We had a relaxing holiday here at the house with our parents, Mike's brother, Dan, and our sweet nephew. It was so nice to be together and celebrate an extra special day of thanks, despite all we are currently facing. Before the holiday, my neurosurgeon lowered the dose of my steroids, in the hopes of offering me some much needed rest. I was thrilled about this news, but looking back now, it ended up back firing. I suffered greatly last week with a significant increase in horrendous headaches, neck tension to the point of not being able to move my head, visual changes, dizziness, lightheadedness and balance difficulties. The frequency and severity of these symptoms increased exponentially and were occurring every 3-4 hours, around the clock. Luckily, my amazing radiation oncologist checked in on Monday and did not like what he heard from me. He ended up tripling up on my steroid dose, and although I knew that would affect my sleep, I did not even care if it would give me relief from the rest of these symptoms. Sure enough, Tuesday night I ended up getting 1.5 hours of sleep, but the rest of my symptoms lessened so it was totally worth it! The scariest side effect lately is that I have had several episodes of severe lightheadedness, where I completely lose control of my legs. They start to wobble and shake and I completely buckle. Thankfully, Mike has been with me each time this happened and has completely prevented me from hitting the ground, and likely becoming significantly injured. As a neurological physical therapist, these kind of symptoms especially freak me out, with what I know about the brain, but again, I am reminding myself that this is temporary and will hopefully improve soon! In the midst of all of this, we have been hugely blessed by so much love, support and bright spots in our days. We continue to be surrounded by the most loving family members, friends, and co-workers -wishing to cater to any and all of our needs. I started to feel well enough to venture out a little each day and was able to visit with my girlfriends, spend time with extended family, and stand in my front yard on Tuesday night in complete shock and awe as I listened to an incredible choir of nearly 60 friends sing us Christmas carols to brighten our spirits as we prepare for this gamma knife procedure! What an amazing and touching display of love and thoughtfulness, all organized by my girlfriend, Sara! I feel like the luckiest girl in the world to be surrounded by so much love and kindness and our words of thanks are simply not adequate to capture our endless gratitude. This morning I had my usual weekly chemo scheduled, and before that, it was my 8 week check in appointment with Dr. F, my oncologist. While he has been aware of our current situation, I haven't seen him in person since everything changed on November 12th.
The benefit of being awake all night on steroids, is that I finally had the time and energy to start to mentally and emotionally process what all this means (my cancer metastasizing to my brain) and consider what I wanted to ask Dr. F about how this may impact my treatment plan and future. I learned over 12 years ago to be careful about Google searches and internet deep dives, but I am also passionate about being my best advocate and being very informed on what is going on with my disease and what the latest treatment options may be. So I came prepared this morning with a list of questions and topics to discuss. Unfortunately, things did not go as planned. After checking in at Karmanos, heading to the infusion center to have my port accessed, and blood drawn to assess my lab work before chemo, I stood up to walk over to the clinic side of the building to see Dr. F and another episode of severe dizziness, lightheadedness, instability and legs buckling occurred. I lost all control of my legs and could no longer stand or walk. Thankfully, I felt it coming, warned Mike and held on to him tightly as my nurse yelled for a wheelchair. They wheeled me over to see Dr. F and eventually I started to feel better. We aren't sure why this is happening but it's likely a side effect of the steroids and I usually start to feel better after laying complete flat, eating some food, and having fluids. Because of how awful I was feeling, Dr. F decided to hold my chemotherapy for today. While I was disappointed to miss a third straight week, I know he is right and that there is no sense to pile this on the day before I am about to have high dose brain radiation. He wants to progress forward on a week by week basis for now and take things very slow; allow my brain time to rest and recover, and know that a few missed chemo infusions is okay in the grand scheme of things. We had a really good appointment and Mike and I both felt better after discussing the situation with him. I will share more of that in a follow up post, as I can tell I am losing some steam. :) The biggest news for now is that we are officially "a go" for gamma knife radiation! I will be arriving at 6am tomorrow morning at Karmanos to start this process! It's expected to be a 6 hour or so, outpatient procedure, so hopefully we will be home by the afternoon. There will be a team of my radiation oncologist, neurosurgeon and other physicists there to run brain CT scans, brain MRI's, screw a metal halo into my head, and set the stage as perfectly as possible to deliver this high dose radiation directly to the cancerous tumor, and hopefully avoid all my healthy brain tissue. The goal is that they are able to get rid of all the cancerous tissue in this "one and done" procedure and that after a likely increase in swelling and inflammation, I will start to feel better over the course of the next several weeks. Mike and I, along with my medical team, are feeling very optimistic and hopeful about gamma knife radiation, and grateful this is an option for me. We would be so thankful for your continued love, support and prayers as we head into this next phase of my healing and recovery. I will be sure to update you all once I am feeling up to it- hopefully sometime soon. I feel surrounded in love, peace, and hope for brighter days ahead. xoxo, Meg
1 Comment
Aunt Carol
11/30/2023 09:43:23 pm
I am in awe, sweet girl.
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