A year ago today my life forever changed for the second time in two years. I want to share my story so that I can hopefully help others going through difficult situations and also as a way to clear emotional space in my body for more positive and healing thoughts. Life sure is wild and if there is one thing I have learned in the last year it is to truly live in the moment, not even the day, but the right now. We are never guaranteed tomorrow and you don’t want to waste it worrying what Sally thinks about your new haircut.
On January 7th, 2020 I nearly died. It is still very raw and makes me cry whenever I think about it and about the people who were beside me. At the end of 2019, I got a cold, but it wasn’t anything major. As you may or may not know, I have neuroendocrine cancer and in the fall of 2019 I had undergone two bland liver embolizations. Looking back, I believe my immune system was further depressed from the treatments. That combined with the holidays, buying presents, wrapping presents, get togethers, doctor’s appointments, scans, Christmas and then packing for a trip to visit my in-laws in Florida. It was a lot for someone immune compromised. There was a nasty bug going around that year and everyone at my in-laws house ended up getting it. I actually think I started off with a cold and then got a flu from my kids on top of it. I started feeling worse and worse while I was there and my father-in-law suggested I go get checked out to rule out pneumonia. I did so and the doctor said it definitely wasn’t pneumonia. I should have insisted on a chest X-ray but I didn’t. One of the many lessons I have learned over and over in the last two years, YOU HAVE TO ADVOCATE FOR YOURSELF. So, two days later we started the long drive back from Venice, FL to Chicago. By the time we got home I felt even worse. My lungs were congested, I was coughing, it hurt to breathe in. I had made an appointment at the local immediate care for the following day. My mom arrived that morning and when she saw me she said, you need to call your oncologist and we are going to drive downtown to the hospital. I did so and was thankfully was able to checkin to the ER before I left my house. If you have ever been in an ER in downtown Chicago in January, you will understand why that is HUGE. You could literally wait for 6 hours just to get to triage. I checked in and was taken to triage immediately. From that point on I don’t remember anything for two weeks. So, most I what I am sharing is from what family and friends have shared with me.
When I entered triage the nurse was immediately concerned with my oxygen saturation. Within 30 minutes I was in the ICU and gasping to breathe even with oxygen. The ICU doctor told my mom that he needed to intubate me right now and made her leave the room. Several hours later they let my mom and dad back into the room. They were definitely not prepared for what they were about to see. My body went into septic shock. I had a drain in one of my lungs, I was on kidney dialysis and connected to about 12 different antibiotics. All of my organs started shutting down and my blood pressure dropped really low so they also had me on pressors. They knew I had an infection, but didn’t know what it was as there was no time to wait for blood work results. Thankfully one of the antibiotics I was on matched up with the infection I had.
My dad was here at that point. The ICU doctor came out and explained that the situation was tenuous. My parents were in shock and the ICU doctor didn’t think they were understanding the severity of it. He said, “you need to call her husband, she may not survive the night”. The ICU doctor ended up calling Craig from my mom’s phone and filled him. You can imagine his shock answering a call he thought was my mom and instead talking to an ICU doctor.
We are SO fortunate and grateful to have family close by to support us. My Aunt Kathy and Uncle Greg came over to the house. My Aunt Kathy stayed with the kids and my Uncle Greg drove Craig downtown as he was too upset to drive. Both of my sisters came down that night as well. The 5 of them were there for 5 days straight. They had one hotel room that they were rotating showering and sleeping.
I remember little flashes of seeing people, but it was a dream like state where I wasn’t really there. Most likely because they had me sedated while I was on the respirator. After 8 days they took the respirator out and after two weeks I moved out of the ICU to regular care. Apparently I was a bit of a legend and all the doctors were astounded that I made a complete turn around. My mom ran into the ICU doctor from the first night and he said he was following my case and couldn’t believe how my body came back. From that point on my memory become more clear. My throat felt raw from the respirator and I was SO thirsty. I tried to talk and my voice wouldn’t work. My sister Erin wrote the alphabet on a piece of paper so that I could circle letters to communicate. But this was extremely difficult because my vision was blurred and I couldn’t seem to move anything on my body. It was a scary feeling being trapped in my body not being able to express myself. I wanted to chug a glass of water so bad, but they wouldn’t let me because I couldn’t swallow because my throat muscles went into atrophy. In fact, most of my muscles went into atrophy and I couldn’t even stand or walk at this point.
Since my diagnosis my liver has been large because of the tumors in it. Despite having so many lesions, my liver function has stayed consistently normal (it’s something I work hard to maintain with my integrative doctor). The liver is a miraculous organ that will fight to keep you alive and also is capable of regrowing. During this time my liver grew even more and I developed ascites because of it. So, it helped keep me alive, but left me feeling extremely uncomfortable. For a year now, my abdomen is as large as a woman in her 3rd trimester of pregnancy. Because of the ascites, not moving and having so many fluids pushed in me, I had extreme edema in my legs, ankles and feet. I was carrying about 30 lbs of extra fluid on my body. And this is on a body that became rail thin from not eating for two weeks. The combination is nothing short of difficult to overcome. During my time in the hospital I developed blood clots and ended up with 4 in total. They put me on blood thinners which became problematic. It caused my tumors to bleed and my hemoglobin to drop. I had several blood transfusions while there. I went off the blood thinners and thankfully all of the clots cleared up on their own. Once my hemoglobin was holding, I was discharged to Shirley Ryan Ability Lab. It’s a state of the art rehabilitation facility that has incredible views of the city! It’s an inpatient facility so you have your own room, nurses and doctors that care for you in addition to speech, physical and occupational therapists. You are in therapy for 6 hours a day, 6 days a week. It’s intense! When I first arrived I couldn’t even lift my foot and tap it on a step. I had some basic PT while in the hospital so at this point I could walk with a walker. I was at Shirley Ryan for 2 weeks and definitely made improvements. I passed my swallow test so was able to get off of thickened liquids (SO disgusting!), I became a lot faster at walking with the walker, was able to go slowly up and down the stairs, bathe myself, dress myself (although very difficult) and move around the kitchen. But I still had a long way to go. I am in a much better place now but still haven’t gotten back to the state I was in prior to the pneumonia.
Why? is probably one of the hardest questions you ask yourself when going through a difficult situation or tragedy. Sometimes we will never know why and we have to accept what is. This is difficult for me because I am an engineer and I like to solve problems. I have had a lot of time to reflect on what happened over the past year. I know it was a miracle that I recovered and lived and several doctors said so as well. I have been on a spiritual journey the last couple years and there are several instances in the bible that talk about spontaneous miracles. I got upset a few times thinking, why can’t God spontaneously heal me? I came to the realization that miracles don’t look the same in the modern world, but they still happen. Because of modern medicine and great ICU doctors, I survived and that’s a miracle. Even though it has been the hardest year of my life, I still feel so fortunate to be here with my family and friends and see my children grow one year older. God brought me back for a reason so I am living each day with hope and gratitude.