Shortly after I got home from OBX, facial numbness led to a brain MRI showing extensive cancer involvement in the lining of the brain and skull. Progression was quick, leading to extreme headaches, nausea, and vomiting. We stayed a few nights at Hopkins for observation and management of the side effects. A spinal tap was also done and all results have been negative. The verdict is still out on if I have cancer within the spinal fluid. Something happened with the pathology and that test was never done. My Doctor and the tumor board at Hopkins all think that these results are negative and I do not have cancer within the fluid. There isn’t a plan to re-test at this point. We are trusting in the team at Hopkins on this.
On November 20th I started brain radiation. It was a really tough decision to do this. Brain radiation is so extreme and the side effects can be debilitating. At first I said no to treatment, but my Radiation Oncologist called me on the Sunday we were still at Hopkins and talked me through things. I felt more at peace with moving forward and we moved fast. Three radiation treatments were full brain. The following 11 treatments were cranial, skull, and jaw treatments. My amazing doctors have managed to create a treatment plan that saved as much brain tissue from being affected as they could in the last 11 treatments. This also made me feel better about moving forward with radiation. The side effects from radiation have taken a toll both physically and emotionally. It was rough for many weeks. I experienced extreme nausea and vomited for almost 2 straight weeks. To get to treatments I had to lie in the back seat of the car, and almost every time I got sick from motion nausea. Headaches were extreme and I ended up on a steroid to help manage these symptoms. Fatigue was also pretty extreme and I slept a lot during the days. I received hydration at Hopkins each day that I had radiation to help keep me hydrated since I was vomiting so often. I am still dealing with some weakness in my legs and stairs are hard for me to climb right now still. I have been done with radiation since December 11th and am still not all the way back to “normal.” Other side effects were blurred vision and lack of cognitive memory. I think I lost 2 weeks of true memories of what happened. Like I said, it’s been rough, but I am excited about feeling better and stronger each day. Just need to conquer the stairs!
Radiation caused my hair to fall out and we did a little shaving at home. My sister-in-law came over, and she and Char shaved my head. Back in 2012 when I was originally diagnosed with stage 2B breast cancer I embraced the bald and wore my wigs 2 times total during that time of hair loss. This time around Charlotte really likes the wig and is obsessed with me wearing it. I am not sure if it makes her feel like I am not sick when I wear it, but she is just enthralled with it. She asks me to wear it to things and I was emotional about it. Not upset that she wants me to wear it, but more just emotional that she is so much more affected this time around. She is 6 years old, not 4 months old like back in 2012. I know that this is affecting her more than last time and it’s just an adjustment we are dealing with together as a family.
On December 19th I attended Charlotte’s Christmas music program. It was so fun to see her up on stage singing her little heart out. I didn’t feel great, but was blessed to be able to go. I started experiencing pain in my left side that night. I had had a PleurX tube put in my left side a couple of weeks earlier. I had fluid building up that was confirmed as cancer around the lungs. The tube allowed us to drain the fluid at home, which eliminated the need to go into the hospital for lung taps to drain the fluid. On the 19th I started having massive pain where the tube was and trouble breathing. We were draining every few days at that point as the fluid continued to decrease (a sign the chemo is working). We went from over 600CC of fluid down to 150CC that night. I was hoping draining would elevate the pain, but unfortunately it didn’t that night so we headed to the ER. As usual with our ER visits, it’s late at night when we end up going. Just seems to be the way things work out. I had amazing ER nurses who really advocated for pain meds for me. It took over 24 hours of not being able to take full breaths before comfortable breathing finally returned. It was the worst thing I have ever experienced to date on this journey with cancer. Not being able to breathe makes you panic, so I had to sit and just try to be calm, knowing that if I start to panic and breathe hard it would hurt so badly. I have a new appreciation for breath and being able to take a full breath. Just a horrible experience! They tried a nerve blocker in-between the ribs to try and elevate the pain and it didn’t end up working and was quite uncomfortable to have done. We ended up staying that night in the ER, and then got a room on the lung floor for monitoring. Once I finally got the breath back after the 24hrs I started feeling so much better. They drained a little fluid that was loculated, which means in a pocket that the drain was not in. This fluid came back with a bacterial growth so they gave me some IV antibiotics. I was able to switch over to oral pain meds and they were able to do an oral antibiotic, so I was able to come home. They removed the drain and are hopeful and felt confident that the fluid will stay at bay and no other drains or tapping will be needed. At first they said I would most likely have to be in the hospital for the holidays. I was so upset by this and was so happy when things worked out that I was able to go home before Christmas. I know so many people were praying that I would be able to come home. My family was praying so hard for me and when we got the word we could come home on the 21st it was truly an answer to prayer. I had AMAZING nurses at Hopkins. They were just on top of everything and really advocated for me with the doctors. My tolerance for pain meds is high and I have lost so much weight they are scared of me when I come into the ER setting needing more pain meds. Even the pharmacist Doctor came in the ER to see me and she was just so compassionate and concerned about my pain. She came up with plan that alleviated the pain and allowed my breathing to return to normal. It took time and it was a frustrating process but I’m so thankful I had the team that I had in the ER and on the lung floor.
Shine brightly, live happily, and smile!! Love xoxo – Erin