Surviving Cancer

I was admitted to the hospital on April 12th to undergo my Car T-cell therapy. It was originally supposed to be completely outpatient, but due to the amount of cancer in my marrow, my doctor deemed it best to change to inpatient. That news hit me hard. I was relying on the fact that this treatment could be outpatient and I would not have to stay in the hospital. The first week after receiving my T-cells there was very little going on. I felt normal, I had energy, it was nice not feeling like crap, but kind of miserable being in the hospital when I felt so great. It wasn’t long after being in the hospital for about week, before I realized the hospital was exactly where I needed to be. The side effects started after about a week, and they were anything but mild. The second half of my 3 week hospital stay is a big blur to me, and what I can remember, I don’t want to remember.

My side effects started with a fever, just like the doctors said it would. Sometimes, I hate when they are right! For several days, the fever would come and go. By the weekend of the second week, I was feeling pretty miserable. I don’t remember much, but both Josh and my mom had said that I was moaning and groaning and acting very uncomfortable. It was difficult for them to be there that weekend because there really wasn’t anything they could do to comfort me. This reaction I was experiencing is called Cytokine Release Syndrome. “Cytokine release syndrome (CRS) is an acute systemic inflammatory syndrome characterized by fever and multiple organ dysfunction that is associated with chimeric antigen receptor (CAR)-T cell therapy.” When the CARS start killing off cancer cells, cytokines are released, and if they are released too rapidly it can cause CRS. The symptoms I experienced were fever, chills, fatigue, headache, and low blood pressure. By Sunday morning, it was determined that I needed to go to the ICU because they were unable to stabilize my blood pressure. Josh rushed to the hospital that morning to be with me, but by the time he got there, ICU doctors and my BMT doctors decided I had stabilized enough to stay put. I was so thankful I did not have to be transferred to the ICU. That is no place for an able bodied person, such as, myself. I still wasn’t out of the woods yet, though.

By Saturday evening, my nurses started noticing some changes in my mental status. I started to become very confused and disorientated. By the time Sunday morning rolled around and the ICU issue was put to rest, I started acting very strange. Josh was there, and I was holding onto my phone trying to do something with it. It took a bit, but Josh eventually figured out that I wanted my chapstick, but that I thought my chapstick came out of my phone. I could not for the life of me, figure out why I couldn’t get my chapstick to work on my phone. After this incident, Josh left the room and went to chat with my nurse. He mentioned to her that something was not right. My nurse was aware since it had kind of started the night before. As Josh was talking to my nurse, a neurologist and two other doctors walked over and talked to them about my mental status for several minutes before entering my room to evaluate me.

I was evaluated every morning for mental status changes. I was required to answer basic questions about my name, the date, what certain objects were around the room, where I was, why I was there, and I also had to rewrite the same sentence everyday so they could track and monitor any changes. It was at this point where my answers to the questions were wrong or nonexistent, I couldn’t or wouldn’t answer because I didn’t know how, and my sentence became nothing like the original. By this time, the neurologist was in my room, my doctor was in my room and several other medical staff, all evaluating me to figure out the best course of action. I was likely experiencing Neurotoxicity from the Car T-cells working so hard. They didn’t know this for a fact yet, so they ordered a bunch of tests. I had blood cultures done to test for infection. I had a brain MRI, a CT scan, and a lumbar puncture all to check for possible infections or abnormalities. I then had to undergo an EEG, which I have never had one before. “An EEG is a test that detects abnormalities in your brain waves, or in the electrical activity of your brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted onto your scalp. The electrodes detect tiny electrical charges that result from the activity of your brain cells.”

The entire day is a blur and I actually don’t even remember it all and needed Josh’s help to write some of these finer details. It was late in the afternoon by the time they started the process of connecting me to the EEG machine. All I remember is crying uncontrollablly from the amount of pain I was in. The pasting of the discs onto my scalp was very painful and noisy. Once finished, the wires remained glued to my head for 24 hours to track brain activity and spot any seizure activity. By this point, I was unable to eat and was on IV nutrition, I was bed ridden and had my bed alarm on 24/7. I was not allowed to get out of bed without help from a nurse. To end this day of tests, I also was seen by an ophthalmologist due to extreme and persistent headaches. Then, we waited. It was now time to wait for all the results of the tests they had just run. When Josh left the hospital that evening, he was hopeful that the next morning would be better. That was unfortunately not what happened. I apparently slept well through the night and did not wake up for more pain meds, by morning, I was beyond miserable, in pain, and so confused I had no idea what was going on.

When Josh arrived to visit, he dropped his stuff and ran to me thinking I was having a seizure. I was not, in fact having a seizure, but was lost in my own world. The wires were still glued to my scalp causing an immense amount of pain and discomfort. I do remember, crying and sobbing uncontrollably, begging the nurses to take the wires off. I was shaking uncontrollably, confused, because to me, it appeared as if no one was helping me. However, my nurse, had in fact, given me some pain meds. It took a while, but the meds finally kicked in and I fell asleep. I slept right through, them removing the wires and glue from my scalp. I was done. I slept hard that day. My doctor came in with an update on all of my test results. They did not find any infection or anything abnormal, so it was determined that I was experiencing neurotoxicity from the T-cells. They started me on a steroids to help with symptoms, but it got to a point where my doctor said that they were potentially hurting more so than helping my situation. So they started me on a new, experimental drug, in that, it has not been used much in connection to helping neurotoxicity related to Car T-cell therapy.

That night, I did not sleep much. I was tripping. One of the medications they started giving me was causing me to have very vivid hallucinations. At one point I had full tattoo arm sleeves made out of bright neon colors, and if I pet my arm, the images would flatten like velvet and then reappear with another swipe of my hand. I had wires hanging from my ceiling everywhere, draping around my room. I would see weird objects and shapes slinking across my floor. I saw a woman in white, and would see little furry animals scurrying about my room. The walls were draped in cloth. There was so much more that came and went, and it is something I hope to never experience again.

The following day, Tuesday, my parents came to visit. I was still pretty miserable in the morning, according to them, and I was still having visual hallucinations. My nurse had me get out of bed and helped me shower, which was much needed and helped me feel immensely better. They stopped the drug that was likely giving me hallucinations, and the other drugs they were using to combat my side effects were working like they should. By the end of Tuesday, I was turning a corner. I was still having issues keeping my blood pressure up, and was still receiving multiple insulin injections a day to keep my glucose in check.

The rest of the week was all about working on getting back on a regular diet, getting out and walking and regaining strength, in hopes of being discharged in the next several days. I was discharged 3 weeks after being admitted, on Monday May 2nd. It was a much longer stay than anticipated, but my doctor told us at the end that, my reaction and side effects were on the more severe side that he has seen, but that more severe side effects usually means my CAR T-cells were in my body, literally kicking cancer ass. He also said that at one point, he had all of his Car T-cell doctor friends in the country talking about my case, because of what I was going through, side effect wise. I am so thankful to have these genius doctors from all over the country, working for me!

I’ve been living at an apartment in Minneapolis since my discharge, but get to officially move home at the end of this week. I will still be unable to drive for the next 30 days. I had my first follow up bone marrow biopsy, last week, to take a look inside at my marrow and see how my CARS are doing. Well those results came back today. My doctor called to go over the results. He said my flow cytometry and marrow are free of any B-cell ALL. The CARS did their job and hopefully will continue to do so for months and years to come. He said these results are the greatest results we could expect, and that I am now, considered in REMISSION, once again. I will have a couple appointments a week to monitor my blood counts, and will have another bone marrow biopsy around 3 months.

I have not come to a conclusion on which transplant was harder or more difficult. They both came with their own set of very unique challenges and struggles. I, however, hope and pray that this is finally the end of cancer for me. I will now cherish another new day in my life, April 12th, when I received my CAR T-cells, unless my body ever tells me different again and allows the cancer back. Only time will tell. But for now, I’m looking towards the future with open eyes and an open mind. I haven’t had a “real” summer in 3 years, so I am beyond excited to be able to look to the upcoming months and think about nothing more than relaxing, and making memories with my kids and family!

The last 15 months of my life have been hell on this Earth both for me and my family and there were times where I didn’t think I could continue on and continue to fight.

My strength lies in HIM. It lies in all of my faithful followers, supporters, and prayer warriors. It lies in my family. It lies in my kids. It lies in my husband. I couldn’t have gotten to where I am today, without you all.