Before radiation began, Dr. D, my radiation oncologist, did a chest CT as part of the mapping and simulation for my radiation plan. I told him I’m sick of surprises and Dr. H had told me about once a year, the two if them get a surprise on a patient’s chest CT. I told him I didn’t want to be the once-a-year. He laughed and said he understood.
Radiation began on Wednesday. It shouldn’t have been an issue, but something went nuts for me Tuesday around 4:00 pm. I came down with the worst headache I’ve ever had. Honest to God, I’ve never had a headache like that, and I pray I never have a headache like it again. It came on fairly suddenly. My allergies were awful on Monday and Tuesday. Then, the headache from hell struck. It radiated from my forehead to my temples then down to the back of my head. The pain was sharp…a constant pressure. By 6 pm on Tuesday, I couldn’t stand light. By 8 pm on Tuesday, I was in tears. My husband threw a warm wash cloth on my eyes and banished me to our room, in the dark, to try and sleep.
I woke up on Wednesday with the headache still roaring. The first thing I did was throw up. Then, I gave in and took some Advil to try and help relieve the pain. It dulled the headache a bit, and by 11 am, my head still hurt, but I thought I felt well enough to go get myself a quick lunch.
I was wrong. I got in my car, drove a short mile, my headache returned pretty much full force, and I threw up all over my car as I returned home. Gross, I know.
I called A, sobbing so hard he couldn’t understand me at all and had to calm me down for a couple of minutes. When I was able to tell him what happened and explain how bad my head hurt, he told me to call the doctor and he would have his mom come stay with me. We hung up, and I called my mom. She didn’t answer. So, I called my dad. Sobbing. When Dad answered, all I could get out was “Dad, please come over.” He didn’t hesitate. I haven’t called my dad in tears like that since I was a teenager. My mom called back, and as soon as I answered, sobbing, she just said, “I’m on my way.” I texted my mother-in-law not to come over, and she called to make sure I wasn’t alone. By the time she called, my dad was walking in my front door. He came to where I sat in the hallway and simply said, “Baby, what’s wrong?” I told him, as best I could, that I had a horrific headache and had thrown up all over my car. He immediately got stuff to clean my car and as he went outside, my mom came in. She got me back into bed and stayed with me as we debated whether to go to radiation or not. I told her I had to go. She told me we needed to see what my doctor said, if she called back before radiation.
Dr. O’s office called me fifteen minutes before my radiation appointment. The nurse listened as I explained what was going on and said it sounded like a sinus headache or a migraine. She wanted me to go to radiation and wanted to talk to Dr. O more about what I was telling her. She told me to go to radiation and she would call me back. So, my mom drove me to radiation, with me wearing my sunglasses and sporting a dark washcloth over my head. I could not stop crying…my head hurt that bad.
I was a few minutes late to radiation, but they didn’t care. They were so kind to me. I explained I had a horrible headache and was nauseous. Before I could go to radiation, one of the radiation therapists told me Dr. D wanted to see me first, so he took me and my mom to a room. I still couldn’t stop crying from my head hurting.
Dr. D came in, saw me crying, and said, “Wait, don’t be upset. It’s nothing.” I just looked at him. My mom told him I had a headache unlike any headache I’d ever had and told him what all had happened that morning and afternoon. He said it sounded like a migraine. Then, he told me something had shown up in my liver on the CT. Before I could scream, he hurried up to say it looked like a hemangioma. As soon as he said that, we relaxed. Several years ago, more than six years ago, my primary doctor ordered an ultrasound of my abdomen and an MRI to check out some things. On both the ultrasound and MRI, two hemangiomas were found in my liver. We knew about them. I’d told Dr. O and Dr. H about them. I’d forgotten to tell Dr. D. Other than that, the scan was completely clear. He sent me to radiation and told me to tell the therapists about my headache, which I already had, so they could try and make radiation easy.
The three radiation therapists were amazing. Kind. Caring. As soon as they had me arranged on the table, they covered me in warm blankets and put a cool cloth over my eyes. The time I spent in radiation on Wednesday was the best I felt the entirety of Wednesday. It was dark. It was cool. I was comfortable. My head hurt but not like it did when I stood up or did anything. They told me the first session would take a little while, and it did. I didn’t care. It was the best I’d felt in 24 hours.
When it was over, my mom took me home. About fifteen minutes after I got home, crying again from my headache, my phone rang. It was Dr. O’s office. The nurse told me Dr. O wanted a brain MRI done first thing Thursday morning to rule out cancer or a tumor in my brain.
Mic drop. Full stop. I’m sorry, what?
HER2 positive cancer can spread through the central nervous system (CNS) and to the brain causing brain mets. When a HER2 patient develops a headache that is persistent for no reason, it can warrant a doctor ordering a brain scan. Dr. O was taking no chances. In the meantime, the nurse told me something OTC to take and to be at Baylor Dallas by 9:00 am Thursday morning.
It was not a restful night. My head hurt. I was nauseous. My parents were freaked. My in-laws were freaked. A was completely freaked. I was freaked and in pain. The OTC dulled the headache quite a bit, but it was there. I could feel it lingering…masked.
Thursday morning, A woke me up as he left for work to tell me AJ had a 103 degree fever and broke down. It’s been awhile since A crumbled, but AJ waking up sick was the straw that broke the camel’s back for him. His stress level has been through the roof since my surgery. We talked, I tried to ignore my headache, and he went to work. On his way to work, he called his mom to come stay with AJ while my mom took me to Baylor Dallas and my dad took S to school.
I threw up before we left thanks to the headache. By that point, I had not kept down any food and hardly any liquids since Tuesday night. The drive to Baylor Dallas was awful. My head was pounding. It was awful.
We got to the imaging center, I filled out paperwork as best I could, crying the entire time, and waited. My mom sat there with me pulled into her lap as I cried as if I were a little kid. I’m sure seeing an obvious cancer patient (I wasn’t wearing a wig and had taken my hat off, had on no make up…I looked like what I am: a cancer patient) sobbing made people in the waiting room uncomfortable, but I didn’t care. My head hurt. My mom was comforting me. The reality is cancer isn’t pretty. There are many times of fear and deep sorrow and pain. There are times when nothing helps the pain, but a hug comforts. My mom wasn’t letting go of me until they called me back, the stares in the room be damned.
I was called back and put in a private room with a recliner. They knew I had a horrific headache. We ran into a problem after I’d changed for the MRI. They couldn’t do an MRI. I have tissue expanders. There’s metal somewhere in them. They called Dr. O. She orders a head CT. Insurance company balks. The insurance person at the imaging center came to talk to me and said the insurance wanted to know my pain level and how I felt. My answer was a 9 and awful. I hadn’t kept food or liquids down in two days. I’d never had a headache like this one.
The insurance approved the CT. It was done in minutes, and we drove back home. As soon as I got home, I threw up again. Then, I called Dr. O’s office to tell them I’d had the scan, the headache was still roaring, I hadn’t kept down food or liquids, and I didn’t know what else to do. I crawled back in bed and just sobbed. My mother-in-law sat on my bed beside me.
I know how this all sounds. It sounds over dramatic and exaggerated. It’s not. I’ve never, ever, had a headache like this or felt as terrible as I felt Tuesday night, all of Wednesday, and all of Thursday.
Dr. O’s nurse called me back about an hour later. The first thing she said was “I have your CT results already. There’s no sign of cancer in your brain.” Then, she told me my headache really sounded like a sinus driven migraine and to go to my PCP to get checked out. Until then, she told me to keep taking the OTC, keep a cloth on my head, go to radiation, and rest. Eventually, the headache would lessen and go away.
My mother-in-law took me to radiation. The therapists were awesome again. The OTC did dull my headache, and I stayed in bed once we got home and scheduled an appointment with my PCP for the earliest I could get, which is next week.
I woke up on Friday with no headache. Not even a lingering dull bit of it. I woke up suspicious and waiting for it to start up again. It didn’t. I spent most of Friday waiting for the headache to strike again. It didn’t. Truthfully, I’m still waiting for it to strike again.
The things that have happened over the last week…the last six months, really…have been traumatic in some ways. I’m on guard. All the time. Like today. It’s Saturday, and I’m waiting for the headache to come back. I’m easily upset. I’ve experienced anxiety. I’m scared. It seems like so little is easy now. I worry about the future for A, S, and AJ if this beast inside me doesn’t stay contained. I worry. A lot. And, yes, I know worry does nothing but steal the joy from today, but it’s so easy to say “don’t worry,” but it’s so very hard to practice.
Last Thursday, a former local news reporter, Janet St. James, who has spent the last year or so battling breast cancer, posted an article from Psych Central on Facebook. The article, “Study Finds Most Breast Cancer Patients Develop PTSD Symptoms,” discusses the lasting impact the stress of a breast cancer diagnosis causes for patients.
I hope I can just put all this behind me and my treatment is successful. One day, I hope this is just a bad memory. But, it’s going to leave its mark…many marks, and most likely, not all of them will be visible. We’ll have to see. I hope I get to see.