Post Chemo Setbacks
I’m not currently living. I’m merely existing in the day to day going back and forth from appointment and labs and impromptu hospital stays filled with medical jargon that’s suddenly all too familiar. My existence has been reduced to acronyms - NHL, REPOCH, DLBCA, CBC, WBC. The only people I interact with these days besides family are the doctors and nurses and pharmacists at Kaiser and they all ask the same questions. There’s no hiding what I’m there for - I clearly have cancer. At least nobody thinks I have COVID.
All I can think about are the things I miss. Normalcy, concerts, alcohol, a pony tail, sleeping on my right side, feeling cute, getting dressed without having to hide my PIC line. Weeks like this one it’s a struggle to find anything good to focus on. On Sunday I went to Kaiser in Garden Grove (a new one for me) for my PIC line dressing change and blood draw. I wasn’t feeling well - clearly the effects of the chemo were already starting to hit. I was lightheaded and dizzy and nervous about this appointment. We took the kids to the pool in the morning to try and beat the 90 degree heat and that may have been too much for me. Sitting outside in the shade fully dressed with a sunhat may have been too much for my body to handle - yikes that’s pretty pathetic. I got to the nurses clinic and still was feeling really lightheaded. It was at that moment I realized I probably should have eaten lunch before coming in. I have a bad habit these days of only eating when I’m hungry and I just hadn’t been hungry that day. I need to do better. So there I was, getting blood siphoned from my PIC line when everything went black. I’ve never passed out before and I don’t recommend it. I was only out for a second and when I came to I was dripping in sweat. I felt much better after resting for a few minutes but the nurse wanted to take my vitals just to be sure. My blood pressure was 91 over 57 and my pulse was really slow. I have high blood pressure and take several medications to try to keep it in the normal range, so to see a BP more than 30 points lower than normal was really scary. Apparently the nurse thought so too and immediately called a doctor to see if she could release me. Turns out no - they sent me down to urgent care where I was hooked up to an IV and given fluids. They tested my blood that was just taken and turns out I was dehydrated and my potassium was way too low. That sounds familiar. They gave me chalky, dissolvable , disgusting potassium pills so hopefully we can solve that recurring issue. After 3 hours in urgent care they finally released me once I was re-hydrated and vitals were normal. I was terrified they were going to rush me to the hospital. I can’t help but feel embarrassed that I can’t even manage to remember to eat or drink water. I really am a mess.
This is my bad week so I knew that I would be feeling all of the chemo side effects as I did last time but worse because my body is still recovering from the 1st round of chemo and they increased most of the dosages this time so it would be doubly bad. Sure enough I was unable to leave the couch most of the week - just no energy at all and all sorts of nausea and weird digestion issues and discomfort. My typical routine is get up at 5 or 6 and take a handful of various prescriptions and go back to bed for a few hours. That’s when I finally have the energy to go from laying in bed to laying on the couch. Add in a few trips to the kitchen for snack and water and the occasional trip to Kaiser for labs that about sums up my week. Not too exciting until yesterday when I woke up in the middle of the night with a fever. I can feel the moment a fever hits these days. Even a minor fever can make it feel like I’ve been hit by a bus with all over aches and pains and since I have no immune system it’s really dangerous for chemo patients. All of the doctors and nurses were sure to tell me that if a chemo patient gets a fever of 100.4 they need to rush to the hospital. That’s really low! We don’t take the kids to the doctors unless their temperature reaches 103 or 104. So I took some Tylenol and hoped it would go away. Around 11, I woke up from a nap with full body chills and I rushed to take my temperature again. It was now up to 102.4 - oh crap - that’s 2 degrees higher than when I should have rushed to the ER. During this horrifying time of COVID, the last place I wanted to go was the ER so I called my oncology nurses and they told me I need to go anyway. They also let me know that if I get to the ER and they find a need to admit me to the hospital, then they will have to push back my next round of chemo. Great, now I’m worried this means I’m causing my treatment to be delayed and my cure to be hindered. Now I really don’t want to go, but a fever with no immunity is nothing to mess around with - so off to the ER we went. I was hoping they could check me out, give me something to clear it up and send me home - I’m such an optimist. I made sure to tell everyone I came in contact with that I’m a chemo patient since they have to make sure to keep me away from the really sick people. They put me in a private room in the ER and immediately started running test and hooking up an IV. They took blood from both arms and tested me for everything - including COVID (spoiler, I don’t have it). Turns out my blood counts are really low - white blood count is the lowest it’s ever been at 1.1. They checked me all out and determined that I don’t have a virus or infection - I have a neutropenic fever. This is common in chemo patients where they have such low ANC (absolute neutrophil count - the white blood cells that fight infection) where you basically have no immune system and that alone can cause a fever. They spent a few hours pumping me full of antibiotics in the IV and then sent me home with more antibiotics to take at home. So for the 2nd time this week I was returning home from the hospital grateful they didn’t hold me hostage any longer.
I feel like this whole cancer and chemo nonsense has been the biggest trauma I’ve experienced in my life. Trauma so intense that I’m sure I’ll have PTSD like so many other cancer survivors talk about. I’m constantly scared. Nervous of every appointment, every phone call, every blood draw. I’m convinced I can feel the tumors growing back. I’m terrified of my unknown future. What happens when my disability runs out, what happens if I loose my job, how will I pay for my health insurance? Or worse, very few companies even offer Kaiser because it’s so expensive and what if I get laid off and have to find something new and they don’t offer Kaiser? How will I go about finding a new oncologist and team to help me through this? Will my cancer be considered a pre-existing condition? Will I be discriminated against by future employers because I have cancer and will be taking time off for all of the doctors appointments I’ll have for the rest of my life? How long before my cancer returns? Cancer will continue to haunt me like a ghost following me around waking me up in the middle of the night filling me with fear and pain and sadness for the rest of my life.
