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!
Ringing the bell on the last day of brain radiation!
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.
I started a new chemo on the 18th of December, we are on to plan C at this point, as A & B chemos didn’t work enough to control the cancer. The chemo is called Carboplatin. I have had 2 treatments so far and things are going well. I have a rash looking cancer on my chest, and since it is visible it is helping us to monitor how effective the chemo is working. The rash seems to be changing and smoothing out, which is a sign the chemo is working (woo hoo!). This is such an answer to prayer. We are really hoping that this chemo stops the progression, as scans still showed growth and new involvement at my last scan. I will have scans again in Jan/Feb time frame, so we are hopeful we will see more reduction in tumor markers and lymph node involvement plus the lung fluid. We do have a plan D option, which is another chemo pill, to try should we need to move in that direction and we take comfort in knowing we still have a backup plan.
1st IV chemo on plan D
My spirits are improving now that I am feeling better. It was rough during radiation. I woke up on Christmas Eve with an amazing feeling of hope and peace. It was just this feeling that came over me as I opened my eyes and I knew things would be ok. I would get better and stronger. I would conquer this cancer and live life to the fullest. The day was amazing and I felt the best I had felt in what feels like an eternity of pain and suffering. It was an amazing feeling and I am excited to share that here on the blog with all those who have been praying, sending positive vibes and love my way. I feel all of it and ask that you keep them coming my way. I so appreciate all the amazing people who have rallied behind me and have been supporting me through this crazy journey of stage 4 cancer.
Shine brightly, live happily, and smile!! Love xoxo – Erin
We had an awesome 4 days of Christmas starting with Christmas Eve with my family and Christmas day with Steve’s dad, sister, brother-in-law, and little nephew. My sister stopped over for lunch and a movie with her beau and we stayed in our matching PJ’s all day. This was followed by Christmas brunch with dear friends of ours, and getting together with Steve’s mom’s family later in the day. Yesterday my all-time bestie came home and stopped over on her way through town and we enjoyed an awesome evening together. I felt so blessed that chemo didn’t kick my ass too much yesterday. I did take a hard nap in the afternoon that helped! It was just so great to feel good enough and strong
enough to enjoy the company of my girls last night.
Thanks Giving
Christmas Pj's
Christmas Eve with my Sister
Christmas Eve with Steve & Char
All-time best girlfriends a girl could ask for
Have to give a shout out to my husband. It’s been a challenging two months, but he has been so attentive and active in my recovery. Cancer has really brought us closer as a family and Steve has just been an amazing support person. I am so grateful I have him by my side during this time. He has had to take on so much with me being so sick the last two months and it’s been incredibly stressful. I couldn’t ask for a better partner to have right now!
I am so thankful for you, who are reading this post and supporting me. I couldn’t be where I am without all the prayers, positive vibes, and love being sent our way. I feel the love and appreciate all the amazing support I feel from so many.
Shine brightly, live happily, and smile!! Love xoxo – Erin
