January 2nd started out like any other day in our house. I woke up, had some breakfast. I decided that I was going to finally start working out again so I turned on Daily Burn 365 and got started. After my workout, I went upstairs to my office to get some work done. Then I had lunch, did some more work, and then made and ate dinner. Around 7pm, I went to the grocery store and decided to give my mom a call since I hadn’t heard from her in awhile. That’s when my life started to turn upside down.
My mom had been sick over Christmas and she just didn’t seem to be getting better. I had been checking on her regularly and she kept saying she was feeling better, but refused to go see a doctor. On January 2nd when I called her, the conversation started out like normal. I asked how she was feeling and she said, “better.” Then she dropped a bomb on me that I wasn’t expecting. She told me she hadn’t eaten for 3 days. My mom has always had a healthy appetite. When she told me she hadn’t eaten for 3 days, I was stunned. That is, until the other shoe dropped. She then confessed that she hadn’t taken her medications for 3 days too. This was very out of character for her. She was religious about taking her medication. At that point it didn’t matter to me that it was 7pm, I offered to come to her house right away to bring her some food. She brushed me off, but I told her that I would be over the next day to bring her some soup. She accepted and I went on with my evening.
The next day, I went to Panera and grabbed her two bowls of chicken noodle soup. That way she would have something for dinner as well. When I got to her house, she was still in her robe and had no makeup on. I remember putting my stuff down and then she went off to the bathroom. I couldn’t figure out what was taking her so long. The bathroom door was open so I peaked in, and she was trying to take a picture of her nose to send to her sister, Joy. She had a little sore on her nose and wanted to show Joy for some reason. After spending 30 minutes in the bathroom to take said picture, she finally came to the kitchen to eat her food. What I saw in front of me, wasn’t my mom. She wasn’t engaging in conversation and just wasn’t herself at all. Then Joy called because she received the odd photo my mom had sent to her. The whole conversation between my mom and Joy was very awkward. My mom kept insisting that Joy had commented on something about her nose the last they saw each other and Joy didn’t have a clue what my mom was talking about. The conversation finally ended and my mom went back to eating silently. I tried to engage her, but she still didn’t talk much. Once she was done with her soup, I decided to leave since I had some work to get done.
On the drive home, I decided to call Joy myself. My whole life, my mom always told me, “If something ever goes wrong with me, call Joy.” That’s just what I did. I had almost called her the day before when I found my mom hadn’t eaten or taken her pills for 3 days, but decided against it, thinking that maybe I was overreacting. After spending some time with my mom at lunch, I knew I definitely wasn’t. Joy and I talked and both thought that my mom’s behavior was uncharacteristic. I got all the way home, when I decided that I had to take her to the doctor. So I drove back back to her house which took about 30 minutes and told her to get ready to go to the doctor. My mom has always been a pokey person when it comes to getting ready, but it took her over 2 hours to just get herself ready for a simple doctor appointment at urgent care.
We arrived at urgent care, and they did a chest x-ray as well as an urinalysis. According to the doctor, confusion is a symptom of a urinary tract infection (UTI) in people her age. After the chest x-ray came back negative, they determined that she had a UTI, gave us a prescription for some antibiotics, and then sent us on our way.
The next day, it was a battle of wills. She refused to eat any kind of breakfast and I had to FaceTime her to make sure she got her medication into her system. Everything seemed to be getting back to normal after that. Then the evening came. It started with a single photo of my dad and me on the Dumbo ride at Disney World. She sent it to me in a text message, and said, “This is cute.” I didn’t think much of it, but agreed that it was cute. Then I started getting photo after photo all saying, “This is cute” or “Still very cute.” Over and over again, she kept doing this. I decided to call her because it was starting to get annoying, especially since some of the photos were of chairs or people I didn’t even know. I told her that I was taking her to the emergency room and that she needed to get ready. She tried to tell me no, but I gave her an ultimatum. I said, “you can either get ready yourself and I’ll take you to the hospital, or I can call 911, and you’ll go in your robe by ambulance to the hospital.” That seemed to catch her attention and she agreed that we could go.
I raced down I–295 to get to her house as quickly as I could. I knew there was something wrong with her. This couldn’t possibly be because of a UTI. When I got to her house, she was still in her robe, on her iPad and I was furious. I made her get up and get dressed. While she was getting ready, I took a look at her phone to make sure that she hadn’t texted anyone else odd things. When I unlocked her phone, I found that she had spent over $2100 on a cruise scam. When I confronted her about it, she thought it was no big deal. My mom is pretty frugal, so her just buying a cruise ticket out of the blue was very strange for her. When she was finally ready, we hightailed it over to the ER.
When we got there, they asked her a bunch of questions like who the president was and what year it was. Both questions she said the wrong information first, and then corrected herself. They got us a room and did some blood work. When the doctor came in, my mom had told them that she was being treated for a UTI. The doctor heard that and just decided that must be the case even after I told him of the newly purchased cruise and other odd behavior. He assured me that elderly patients with a UTI, regularly become confused. He gave her some IV antibiotics and just said to continue the medication we received at home.
At this point I felt like I was going insane. I felt like a little kid that was overreacting to a paper cut. No one seemed to believe me when I said that this wasn’t normal behavior for my mom. I wanted to cry. We finished up at the ER around 11pm that evening and I drove her home.
The next day was a Friday. The urgent care place we went to on Wednesday said that they were going to culture her urine to make sure that she was on the right antibiotic and that we should have the results of that by Friday. That morning, my mom took her medication with no problems and she ate some breakfast. I decided to call the urgent care office to see if the culture had come back. When I called, they told me that there was no growth. She didn’t have a UTI. I immediately got on the phone with her primary care physician’s office to schedule yet another appointment. Unfortunately, her PCP wasn’t available, but we could see another physician in the practice. I called my mom up to let her know we were going to the doctor again and she was not pleased. But I didn’t care at that point. I was worried sick about her and I needed to get her the best care I could.
When we arrived at the office, I thought for sure that we would finally get some answers. Clearly this had to be something other than a UTI. I thought for sure she had ketoacidosis. She’s diabetic and she had almost every symptom for the condition. All I needed to know is if she had any ketones in her urine. We got back to a room and they performed all the same neurological exams that the two previous doctors had done. She passed them with flying colors. The doctor came in, and did his exam and concluded that she had a UTI. I brought up the fact that urgent care had said that there was no bacterial growth and he said that it could be any number of reasons why that would happen. They had taken another urine sample at the ER the previous evening and he said based on that, he thought for sure she had a UTI. He switched her to a different antibiotic though and sent us home. He did mention that if she wasn’t feeling better by Monday to give them a call and they would get her set up for CT scan.
I called Joy right after that appointment and I was pissed. I felt like my concerns were being swept under the rug and that I didn’t know anything. I felt like my mom couldn’t be left alone that evening, so Joy and I both agreed that I would stay there that evening and Joy would come into town from Detroit the next day. I was in for a long night.
I picked Joy up on Saturday and it was such a relief to have someone else here to help. I was really the only person who was seeing all the crazy things going on and so I felt like maybe I was overreacting. It was good to have another person here to see it too. Joy stayed with my mom Saturday night and I was able to go home to my family. Sunday came along and we thought that my mom was making a turn for the better. She was engaging in conversation again and seemed to be more herself. Joy had planned on staying until Tuesday, but decided that since my mom appeared to be better that she would go back to Michigan on Monday instead. Monday everything changed.
On Monday, my mom and Joy had decided to go out to breakfast at Shoney’s, but it took my mom twice as long as normal to get ready again. She had no concept of what time it was and just couldn’t bring herself to get out of bed. Finally Joy was able to help her get up and ready for the day. I met them over at Shoney’s and when I saw my mom, I knew that she hadn’t turned a corner. She was back to being disengaged and very docile. She just had a blank expression on her face the whole time we were at breakfast. I decided to put a call into the doctor’s office because I knew something wasn’t right. She should be better by now, right?
We were advised to go back to the ER by her PCP. They said that the ER would be able to fast track any tests that she would need. They took some blood and urine. And then we finally got a CT scan that we desperately needed. We sat in the waiting room for what felt like hours. Finally we were called back to a room and the doctor came in. She said all my mom’s blood work came back clean. She said in general, my mom was in pretty good health. Then the doctor said the words we had been dreading. She said that my mom’s CT scan was a bit troublesome. They found two masses on the left frontal lobe of my mom’s brain. I broke. I remember Joy pulling me in for hug and just crying like I’d never cried before. It wasn’t because I was sad though. It was because I finally had an answer to my mom’s altered mental state. I wasn’t crazy. I wasn’t overreacting. There was something wrong. The doctor then went on to say that it was most likely a secondary brain tumor, meaning that it most likely originated somewhere else in the body. They would need to perform more tests, but we’d need to be transferred to another hospital for that. We waited for over 4 hours for my mom to finally get the transfer orders and then finally transported to the new hospital. It was 1am before I was finally able to get back home and go to bed.
The next few days were a blur. After an MRI of her brain, and CT scans of her chest and pelvis, it was determined that the tumor wasn’t secondary and had originated in her brain. And the worst part, it was inoperable. Her tumor was located in her left frontal lobe, but it appeared that it had crossed over the corpus callosum and into the right hemisphere. They told us the risks weren’t worth it to remove the tumor because my mom as a person, would likely be lost from the surgery. They were able to perform a biopsy though to see what type and kind of cancer we were dealing with. The biopsy was performed on January 11th.
After the biopsy, the surgeon came out to talk to us. She said the preliminary pathology was that my mom had a stage IV glioblastoma multiform (GBM). This was the worst news we could have received. Given how large the tumor was and the location, they said that radiation was unlikely to shrink it and the best we could hope for was that it would just stay the same size. I was heartbroken. This is my life now, I thought. I was so angry because I just had to say good-bye to my dad not even 5 years ago. And now I was faced having to do it all over again with my mom?! How is that fair? I wasn’t ready to say good-bye just yet.
We went back to see her after the surgery and she looked really good. They had been giving her steroids for the last couple days because of all the swelling that was in her brain due to the tumor. The good news was because of the steroids, she had her mind back a bit. She was able to understand what was going on, at least for now. They took her up to ICU (standard procedure after a brain surgery) for her to be observed for the night.
The next day I felt like we were going to war. We met with oncologists, therapists, patient advocates and so many more doctors and nurses. We had great care while were at the hospital and she was getting the therapies she needed. We were discharged over the weekend. Joy decided to extend her stay because we felt like my mom needed around the clock care at that point. Plus we had doctor’s appointments set up for the following week to discuss treatment options. It was a huge undertaking by Joy, but I will forever be grateful for her.
The next week we met with the oncologist we saw at the hospital. They said she would undergo radiation and chemotherapy for 6 weeks. Then she would have a 4 week break and then do chemotherapy pills for 1 week out of the month for the next 6 months. We also decided to get a second opinion at VCU Massey Cancer Center. But they told us the same thing. We decided to proceed with VCU though because they were most likely to have clinical trials that we could participate in once we went through the standard treatment. Even through all this, the prognosis was poor. Every survival story you read about with this type of cancer, the patient had surgery to remove the tumor. That wasn’t a possibility for us. Or at least that’s what 4 doctors told us. That is, until I got a call from Duke University.
Our original oncologist that gave us my mom’s diagnosis had offered to put a referral into Duke. She said they would have the best options for treatments for her. I received an email for Duke within a couple days asking for me to send over all my mom’s scans and pathology slides for them to evaluate. On Monday, January 29th, I received a call from someone that came up as “No Caller ID” so naturally I ignored the call. It was around 7pm and I figured it was probably just a spam call. Then I got a notification that the caller had left a voicemail. I listened and it turned out to be a doctor with the Brain Tumor Center at Duke University calling about my mom’s case. I immediately called the number he left and had the doctor paged. I figured I probably wasn’t getting a call back that night, but I thought I might as well try. Within an hour, I got a call back. He told me that they had received my mom’s MRI scans from our oncologist and he told me what I thought I would never hear. He said that they had a neurosurgeon who could possibly remove my mom’s tumor. I was speechless. I couldn’t believe my ears. Finally we had a stroke of good luck. The doctor told me that their office would be in touch to get an appointment scheduled for a consult with the neurosurgeon and we would go from there.
When I got off the phone, I immediately started crying. Stephen came over to me thinking that something was wrong. But I was so overjoyed that there was finally some hope. With this surgery, my mom could have a chance at fighting this cancer. I got a call the next day from the surgeon’s office and they got us on the schedule the following week for a surgical consult. Everything seemed to happen so quickly and now we would have to wait a week before we’d find out if the surgeon could remove her tumor.
That week leading up to her appointment seemed to last a lifetime, but the day finally came. The doctor said he thought he could get it out and that she wasn’t likely to have any deficits, but he needed a new MRI scan just to make sure the tumor hadn’t grown more over the last 4 weeks. He was the first and only doctor to say that he thought the tumor didn’t cross into the right hemisphere of her brain. He felt that the tumor was just pressing up against that side and that the majority of it was on the left side.
We went for the MRI and then waited for a call from the surgeon. We waited all evening and nothing. We were getting anxious so I called the office the next day and they told us the doctor was in surgery all day. Great I thought. No way was he going to get to my mom’s scan until the next day. But a few minutes later I got a call that they wanted to do a follow-up at 3pm that day. The doctor was going to fit us in between surgeries to discuss options. Three o’ clock couldn’t come fast enough.
We arrived about an hour early because we were so anxious for some news. We got back to see the surgeon about an hour and a half later. He told us that the tumor had grown some over the last 4 weeks, but he still felt confident that he could remove the tumor successfully. He said that she may have her initiating speech impacted, but that would come back with time. We were thrilled by the news. They scheduled the surgery for February 9th. They wanted to get her admitted to the hospital the day before surgery so they could get her started on steroids. My uncle Jack decided to also come down to Durham to be with us while she was in surgery.
The surgery took about 5 hours to complete. When the doctor came out to tell us that he was able to remove most of it, we were relieved. We wouldn’t know how she really was until she woke up from the anesthesia. We got to see her a couple hours later, and what we saw was nothing short of a miracle. She was talking! Something we thought that might be impaired but it wasn’t. She was able to answer questions and was moving her arms and legs a bit when the nurses would ask her to do so. It was amazing.
Over the next few days, my mom improved each and every day. They got her up and walking the day after surgery. She was quite wobbly on her feet, but that’s to be expected. The next day she was walking better with a walker and her speech was phenomenal. She had some times when she would get confused, and she still does now, but they said it could take a full 6 weeks for her brain to heal completely from the surgery. Neuro-oncologists with The Preston Robert Tisch Brain Tumor Center spoke with us as well and they were very optimistic about the latest MRI scan after the surgery. They told us the surgeon was able to remove all but a pea sized amount of the tumor. Our prayers had finally been answered.
The surgery is not a cure for my mom’s cancer. She still has a long road with radiation and chemotherapy treatments ahead of her. Once her incision is healed from the surgery, we will begin treatments. Our hope is to shrink what’s left of the tumor and to keep away any new growth. We have a great team working with us now and we’re ready to go to battle.
I can’t even begin to express my gratitude to the doctors and nurses at Duke University Hospital. They did the impossible. For the first time in over a month, I finally feel like we have some hope.
Kathee HixonFebruary 16, 2018 at 9:59 am (5 years ago)
Krissy, I am so excited to receive this report. I have had you, Joy and your mom on my Bible Study Prayer list since I first heard the news. We will continue to do so. This is so fantastic and am Praising the Lord all has gone well.
Kristen GrainerFebruary 16, 2018 at 12:08 pm (5 years ago)
Thank you, Kathee. We are too. It’s a miracle that they were able to get the tumor removed. Now we just gotta keep on fighting.
RobynFebruary 16, 2018 at 10:58 am (5 years ago)
Hi Kristen, This is Robyn Oesterle. I was heartbroken to read about your mom but happy to hear of the hope and good doctors. I will be praying for her and your family.
Kristen GrainerFebruary 16, 2018 at 12:07 pm (5 years ago)
Thank you, Robyn. It has been a shock since we found out the news. We’re just going to keep fighting.
Sandra KingFebruary 16, 2018 at 1:28 pm (5 years ago)
Krissy, Thank you for sharing these personal reflections on what has transpired these past 6 weeks. The mother daughter bond between you and Jill is a beautiful one to behold. Prayers being sent your way…….. Love, Aunt Sandy
Kristen GrainerFebruary 16, 2018 at 1:31 pm (5 years ago)
Thank you 🙂