It’s time for an update to let everyone know where I have been. I have actually been in the middle of a blog post for over a month now. It’s called Hell Week and I couldn’t quite figure out why I got to the point where I just seemed to be blocked. I believe it is because of Fred.
Let’s start from the beginning or at least what I feel is the beginning. Around December/January my headaches changed. They just felt different. If you guys remember there was a lot of stress going on around that time. There was a shutdown, I found myself furloughed and my tumor marker spiked. It’s not unreasonable to believe perhaps that’s why my headaches (which are a side effect of my chemo drug) were getting worse.
I kept complaining to my oncologist about how they felt different. It just didn’t seem the same. In June 2018, I did have a brain CT because of headaches and we decided it was side effects from radiation and my chemo drug. The scan didn’t show anything. I will talk about this later which is why I am mentioning it.
As I was saying I found myself complaining constantly. I thought I was just being over dramatic at one point. However, that was not the case. I am very happy I continued to complain. Throughout my journey I have learned you have to be your own advocate. That is why I do a lot of reading, research and I even learned how to read my own pathology reports. Finally in March my doctor said he believed my headaches were migraines from chemo and sent me to a neurologist. He told me he would be able to prescribe me something to help alleviate them. The beginning of April I met with Dr. Olson. I explained how I was having intense headaches and how they had changed, I also mentioned how my chemo brain was getting worse and what I believed was neuropathy from chemo had been more frequent where I was waking up completely numb in my arms and hands more so on the left. He believed me to have migraines as a side effect and decided to set me up for a nerve test to see if my neuropathy was carpel tunnel instead. He did decide to send me to get a brain MRI as well since this time I didn’t have the tissue expanders in anymore so I was able to get a MRI this time. He also informed me this was just checking a box and was not expecting anything to show up.
April 26, 2019 I went to chemo that morning and met with my doctor we discussed how I was having the brain MRI that afternoon and he told me it was going to be fine. I do have to admit I did freak out before the MRI. Apparently cancer treatment has made me claustrophobic who knew that could even happen. I had a feeling this would happen since I had a similar experience before my mastectomy. Cancer the gift that keeps on giving. I was doing fine until I heard the clicks. I told myself don’t open your eyes. So of course I opened my eyes and when I saw the cage over my head I was like nope take it off!! After a few moments I regrouped the nurse and the radiographer assured me it was alright and calmed me down. The nurse suggested placing a towel over my eyes. Apparently I am like a bird and it worked. This was not my shining moment but I assume they see this a lot.
April 29, 2019 I was driving to Jersey for a work trip like I always do listening to my favorite podcast, My Favorite Murder (check it out if you like true crime) and my phone rings. I see its my oncologist office and was like its probably a reminder for my next appointment and since I was driving I let it go to voicemail. For whatever reason I got a feeling I should listen to the voicemail. The message said the doctor needed to see me that afternoon. I was like what? They ended up calling again and I picked up. It was another scheduler that didn’t realize I had already been called. I told her I was on the road almost to New Jersey and there was no way for me to get there today. She was like I’m gonna email Kelli (Dr. Simpson’s PA) and Dr. Simpson and see if one of them can call me this afternoon instead. Already I was like this is weird. However, whenever I have chemo I get bloodwork done and some of it doesn’t come back till Monday so maybe it was that. I called my mom and she was like you can’t answer that phone call till you get to Jersey. Luckily the phone didn’t ring until I got to hotel and was settling in. However, it wasn’t the phone call I had expected. Once I was checked in to the hotel I was unloading the car and my phone rang with an Atlanta area code. I picked it up and it was someone from the neurologist’s office.
The neurologist office was much more up front and clear about what actually was going on. My brain MRI showed a small brain tumor in the right rear side of my brain and they were referring me to Dr. Gullick who is a neurosurgeon. She informed me their office was going to be calling me shortly to set up the appointment to discuss my options and what was next.
This was not how I expected my Monday to go. Dr. Gullick’s office was quick to call and I had an appointment for me on Tuesday May 7. I had to cut my Jersey trip short and return to Atlanta on May 3.
May 7, 2019 I found myself at a neurosurgeon’s office. Thankfully I was not alone and I brought my friend Amy with me. She was in charge of taking notes since my chemo brain is awful. I met Dr. Gullick and we went through that was happening. I had a headache at the time which was great because its so hard to describe exactly how the headache is when its not there. Our bodies are so great about making you forget how pain feels after the trauma is over. I was pointing to the worst part of pain and he was like right there? I was like yes this is where it hurts the most. He told me I was literally pointing to my tumor. Meet Fred. The image below is reversed so the small white mass is my tumor(Fred) and its located on the right rear of my head or in my occipital lobe. If you look at the dark shading around the mass that is the brain swelling.
He told me the tumor was too small to be causing all the symptoms that most likely the brain swelling was making everything worse. All these months of me saying words are hard today (chemo brain) and the intense headaches was starting to make sense. I did ask about me having a brain CT in June 2018, a PET scan in August 2018 and just in February 2019 and how this had been missed. He assured for the brain CT if the tumor was there it would have been too small to show up on any scan. As for the two PET scans apparently it’s not routine for them to scan the brain during it. This was frustrating for me to hear since my left breast cancer the HER2 positive side is one of the ones that likes to jump to the brain.
He went into detail about the different options available to me. Due to the size the gamma knife is an option that would be able to get it all. However, when you radiate something it’s gone and I would not know what it is. I was also told it was highly unlikely that i developed a third primary tumor. For those that aren’t aware I was diagnosed with two different breast cancers which means I already had two primary tumors. Basically he was telling me this was most likely one of my breast cancers. The only way to know for sure is to actually remove it and test it which brings us to the surgical option. After going into a more detailed discussion I was told he was going to be in touch with Dr. Benton and Dr. Simpson and we would all be on the same page when I make my decision.
May 9, 2019 I met with Dr. Benton, my radiation oncologist. He is one of my favorite doctors. The kind that just goes the extra mile for his patients. I will say it was hard going back because as I filled out my paperwork for the appointment I looked up and saw the bell I rang when I finished all my radiation treatments in May of 2018. Which is the pic below.
Dr. Benton went into details about what the radiation would be like if the pathology came back malignant. If I am needing radiation it would be one, two or three treatments. Which compared to my previous 30 treatments for my chest that is nothing. Given its on my brain. He also told me if it is a brain metastasis its the best case scenario since it’s a single site and we will be able to get it with surgery and radiation. Then he asked me if I was on steroids yet. I was like no why would I be? He was like for the brain swelling and stepped out of the room came back with his prescription pad saying you start this tonight and take one every 8 hours. He couldn’t believe nobody had started me on them yet. After leaving there I was feeling much better about everything since a plan was coming together.
The steroids were key even with the crappy weight gain side effects from them they made my pain level decrease. I really didn’t realize how much pain I was truly in. I am one of those people with a high pain tolerance. I just knew I was taking a lot of ibuprofen.
May 10, 2019 I met with my oncologist Dr. Simpson the last puzzle piece. We were discussing that I wanted surgery and how the chemo I’m on doesn’t access the blood/brain barrier so although my body is under control something could have broken off when it was in my lymph nodes prior to radiation and beginning this chemo drug. The plan will be if it’s malignant to continue with the chemo drug I’m on and just monitor the brain to make sure nothing new pops up.
It took me a couple weeks to get back into Dr. Gullick’s office to go over the procedure, sign consent and actually get the surgery scheduled. He was under the impression I wanted to do the gamma knife which is where the confusion came from. I have decided on surgery because I feel I need to know exactly what the tumor is. In my mind it’s benign until they tell me otherwise.
The surgery itself is pretty straight forward. I will go in to the hospital they will do a certain MRI (maybe stealth I’m not sure but this word was used) of the brain that does a detail and fine cut 3D model of it. My tumor is small so the incision will be a small S like shape. The surgery itself should be about an hour. Once I am under they will put my head into a harness to stabilize it. I did ask if they wake me back up while they are in there (I’ve seen too many movies haha) they will keep me asleep they prefer it when they can because the slightest movement can change so much. After I will stay a night in the ICU and the next day they will do another brain scan to see how everything looks. If the scan is good and I am recovering with no complications I will be released home. It’s pretty amazing how you can go in for brain surgery and go home the next day.
My surgery date is scheduled for June 12, 2019
I think this is why I haven’t been able to write my previous posts I think I knew I wanted to address this but I didn’t have all the information yet. I want everyone to know I am in a very good place. I believe we are set to walk certain paths in life although we may not always be able to see the reason why at the time. Perhaps here I may help someone who comes across this blog that finds them in a similar situation. You never know who is watching and looking toward your strengths. I have an amazing support system. I am truly blessed with how many of you love me and have reached out and supported me through all of this. I can not thank you enough. Your love and support has been absolutely humbling to me and I don’t even have words to express my gratitude.