Philadelphia positive B-cell acute lymphoblastic leukemia (Ph-positive ALL)
Mount Prospect, IL United States
I started noticing some things were "off" with my body. In early August 2022, my daughters noticed several large, unexplained bruises on my legs. I just brushed them off as being clumsy or running into something. Then, while lying in bed reading to one of my daughters, my lower jaw and lip went numb, like when you have Novocaine. I got up and moved around, and it got better. This started to be a daily occurrence, and about a week or so later, I woke up and could not open my mouth. I thought I had TMJ, so I called my dentist. He had me come in and looked at my mouth/jaw. He said he was concerned about the numbness because that is not a symptom of TMJ, so he sent me to an oral surgeon. The oral surgeon was concerned about the numbness as well. He took a scan of my jaw, and all he saw was evidence of TMJ. So, he put me on an all-liquid diet and an anti-inflammatory and asked me to come back in two weeks.
That was on a Friday. The following Monday I went back to work as a teacher. During the next week, I started noticing that I was exhausted when walking upstairs. I would get to the top and have to sit down. Eventually, it got to the point where just walking was making me tired. I would go outside to do playground duty and have to find a spot to sit. I felt very winded. I made an appointment with my general practitioner to see what the problem was. The morning of my re-check with the oral surgeon came, and I woke up with great pain in my hips and knees. I got up and showered to go to work but realized that I couldn't go to the hospital. I told my husband that I was going to the ER. We thought maybe I was dehydrated from the liquid diet I had been on. We have three children, so I told him that I could drive myself, and he could come after he got the kids to school.
I got to the hospital and told them that I had terrible pain in my hips and legs and had shortness of breath. They did an EKG right away, drew blood, and took me for a chest X-ray. Then the waiting began. I was there alone and in a ton of pain. I could not help but to moan and cry in the waiting room of the ER. The people seated near me tried to offer me water and asked if I was okay. I could barely respond. After several hours, I was finally brought back to a room in the ER. My husband had updated me that our youngest had woken up sick, so he was waiting on my parents to come and look after her before he came to the hospital. He finally got there just after I got to the room. The ER doctor came in and asked me what was going on. I explained my symptoms and the pain I was in. It had gotten to a point of being unbearable. He started talking about my blood counts not being normal, but they were waiting on more results. When he left the room, I looked at my husband and said that I'm sure that he was talking about cancer. My husband was in disbelief and did not want to hear about that. He said the doctor had not mentioned that, so let's be positive. The doctor finally came back again, and indeed they had seen blasts in my blood, and I needed a blood transfusion right away. A hematologist came down and started talking to us. They would be admitting me immediately. They also started me on some pretty heavy narcotics to try and work on the pain in my legs. Nothing, and I mean nothing was helping it.
After being admitted, we finally found out that I had B-cell acute lymphoblastic leukemia (B-ALL). We just had to wait to see if I was Philadelphia positive or Philadelphia negative before we could begin treating it. That would take a few days. In the mean time, they wanted to do a bone marrow biopsy and a lumbar puncture to check for leukemia in my spine. The next day they did the bone marrow biopsy. After giving me plenty of lidocaine to numb the skin and bone, the fellow attempted a few times to get the sample. He was not successful. He called for the hematologist to come and she attempted several more times. She as well was not able to get the sample. She called for another doctor to come and try. He continued to try on my right side. They attempted 8 times on the right side unsuccessfully. He switched to my left side and attempted twice more before finally having success. It was one of the most painful experiences of my life and left me unable to lift my right leg or walk. I was now bedridden. Over the next two days, I had many scans. Some to look at my head and jaw since I had jaw pain/numbness and some to look at my hip and leg to see why I couldn't move it anymore. I also had daily blood transfusions. Before I could have the lumbar puncture, I had to get my platelets up to 60 because of the bleeding risks. I was in my 20s. I had several platelet transfusions but my body did not seem to react when having them. My levels would inch up but never get near 60, or even 50. The hospital ran out of platelets and I could not get the LP.
We live in a suburb of Chicago and are lucky that we have 3 amazing hospital systems in the city. My husband and I talked and we knew we needed to get transferred to one of those three hospitals. After consulting a friend who is a hematologist in the area, we decided that the University of Chicago Medical Center was where I needed to be. On the morning of my transfer, I needed another blood transfusion. I was talking to my sister during the transfusion and knew that something did not feel comfortable in my arm but didn't look down for a bit. When I finally did, I about lost it. There was a tennis ball-sized lump on my arm. My sister called a nurse right away and she realized that I had an infiltrated IV. That means that an entire bag of blood was just wasted. It did not make it into my veins but just into the surrounding tissue in my forearm. Needless to say, I was happy to be transferred after all of the trouble I had experienced.
When I finally got to the U of C, I felt that this was exactly where I needed to be. They did not let me just lay in bed as the other hospital had. They got me a walker and immediately said I needed to get up. They brought me a bedside commode and said I must get up to use it. Within a day or so, I was using the walker to make it to the bathroom. I was quarantined in my room when I got there as I had a cold that I got from one of my children the weekend before this all started. I was not allowed out of my room the entire time I was there for the protection of the other oncology patients. They still were looking to perform an LP and my platelets were still not high enough, so in the middle of the night, they started a transfusion. Unfortunately at this point, we found out that I have a platelet allergy and I went into rigors. I had three or four more episodes, each after getting platelets, while they tried to find the right combination of medicines to pretreat me with to stop the rigors. My platelet level never got to 60, but it was in the 50s, so they finally did the LP. Within a day, we found out there there was no evidence of leukemia in my spine. Finally a bit of good news. I also found out that I was Philadelphia positive within the first few days of being at the U of C. This was a bit of a letdown. Ph negative has a harder treatment, but in the end, the goal is to be cancer free. Ph-positive generally has a less demanding treatment, but I will live with this cancer for the long term. I started my oral chemo in the hospital on Friday, a week and a day after first finding out I had cancer. They expected me to be in the hospital for two more weeks, but within 3 or 4 days, they surprised me with saying they were thinking of sending me home the following Friday, just 15 days after this saga started. My body was reacting so well to the oral chemo pills that they felt confident enough to send me home!
That was back in September of 2022. I have been doing great ever since. I go in for monthly LPs through the end of July and bone marrow biopsies every three months through July as well. Then those will switch to every 6 months. I am participating in a clinical trial at the U of C with one of my oral chemo pills. Our goal is for me to keep the ALL in deep remission and to avoid having a stem cell transplant as there are so many complications that accompany those. This means, I will be on the daily chemo pills for the long term.
My experience with family and friends have been amazing. I have reconnected with so many people through all of this and one family in particular. They are one of the most service-orientated families I know, always helping those in need. One of their high school-aged daughters is leading an LLS Student Visionaries team. They are doing an amazing job. Their original goal was to raise $50,000. They are right around $150,000! This has been a long road, but hopefully, this is something that I live with for a very long time. Not long ago, the treatment for Philadelphia positive B-cell acute lymphoblastic leukemia (Ph-positive ALL) was very different, and not as effective. The survival rate was very low in adults. Today, my doctor is hopeful that I will live a normal lifespan. I am choosing to believe that as well.