From what I’ve gathered through Google research, most forms of chemo cause a drop in blood cell counts. Leukemia-specific chemo seems to pack a harder punch in this aspect. Since Leukemia originates in bone marrow, which is where cells and platelets are manufactured, and the chemo targets the bone marrow, blood cell counts drop drastically following treatment.
White blood cells are what fuel our immune systems. The standard range for white blood cells in a healthy person is 4,000-11,000 WBCs per microliter (thank you Mount Sinai for that number). At the lowest point following my chemo, my white blood cell count was down to 200 WBCs per microliter. In essence, my immune system was nonexistent, which opened me up to increased risk of infection and illness.
I’d like to say I sailed through this time and managed to stay healthy but the reality is, I didn’t. The first blow came on June 8. I was 17 days into my hospital stay, starting to really feel the crappy chemo side effects, and I got a random dry cough. I also had a stuffy nose and some post-nasal discharge, which was causing my throat to hurt. I didn’t think anything of it, I’d had the symptoms for a few days and they were consistent with what I usually experience with my seasonal allergies. My oncologist, wanting to be on the safe side, had my nose swabbed and tested for RSV, Influenza A & B, and COVID. Low and behold, the COVID test came back positive.
This brought on a flood of emotions. I was angry at first. I’d avoided COVID for two and a half years, only to get it while I was in the hospital. I had a pretty good idea of who it came from, as one of the nursing assistants on the floor had been coughing horribly for days but was insisting it was allergies. Listening to my own cough after being diagnosed and thinking back on hers, she definitely did not have an allergy cough. It was a COVID cough, and she was in close contact with me frequently. Then the reality hit that I was going to have to be moved into isolation, which meant no visitors and no leaving the room. My mom, the amazing woman that she is, had been at the hospital with me every day for the duration of visitor hours. Now I had no idea when I was going to get to see her again. Then came the overwhelming fear. I’m fully vaccinated and double boostered. (I hate that I even have to put this clause here but I know how the Internet is and how the world works this days so, please do not bring your opinions on vaccines to this post. If you comment along those lines, it will be deleted. I am of the my body, my choice mindset, and that includes what vaccinations a person chooses to put in their body. You do what’s right for you, I’ll do what’s right for me, and I trust that we’re all making sound choices that are in the best interest of our own health and wellness.) I’m also in several high risk categories, including being severely immunocompromised at that time due to my low white blood cell counts. All I could imagine was ending up on a ventilator or not coming back from it. I had a complete nervous breakdown when the doctor came in and told my mom she needed to leave. I lied in the bed crying, vowing to never get out of the bed again. It all sounds so melodramatic but my mental health was already on a downward spiral following the diagnosis and this was like the straw that broke the camel’s back.
Shortly after my mom left I was told I could no longer stay on the oncology floor, since the patients around me were also immunocompromised, and that I’d be moved to the COVID floor. I was then told by my oncologist that I would have to be in isolation for 21 days since I was so severely immunocompromised, and there was a good chance my body would shed the virus longer than a “normal” person’s would. The silver lining was that as soon as my counts got back up to a safe level, I could discharge and do the remainder of my isolation at home. However, this only added to the heightened emotions and once I was in my new room, I cried myself to sleep yet again.
The next morning the hospital MD started me on Remdesivir, which was a 3-day IV course. Fortunately I had very mild COVID symptoms. The worst part was the dry cough, which lasted for about 6 days. Real talk here, I had to wear Depends for those 6 days because the coughing fits were so bad I’d end up peeing my pants. Not my finest moment but it comes with the territory. I was lucky because my O2 stayed at 97 or higher. The MD attributes this to the fact that I’m vaccinated and have my boosters, and that I was able to start the Remdesivir so quickly. This was music to my ears because I clearly made the right choice for my personal medical needs in this situation.
Complication #2 came the day after I was moved to the COVID room. My first night there I spiked a fever. It was all the way up to 103°. The nurses on the floor aren’t oncology nurses, so they aren’t familiar with the ins and outs complications stemming from low white blood cells. They gave me Tylenol and kept checking my temperature but by morning, it had only dropped down into the 101° range. I’d also developed abdominal pain overnight, specifically in the lower left quadrant of my abdomen. There was a dull ache like I’d never experienced before, which only got worse if I touched the area or pushed down on it. When my oncologist came to check on me she was already upset that the nurses hadn’t paged oncology when I spiked the fever. When I told her about the abdominal pain and she did a physical exam, she only got more upset. I was whisked away for a CT, came back to have a chest X-ray done, and while eavesdropping heard them talking about a potential blood clot in my lungs. The chest X-ray came back clear but, the CT scan showed that I had a pretty severe diverticulitis flare happening, with a lot of inflammation and a possible perforation in my colon. As you can imagine, this created chaos on many levels.
Surgeons came rushing into my room talking about having to remove a portion of my colon. Because my counts were so low they couldn’t just remove the infected portion, they would have to do an Ostomy procedure, which they said could be reversed when I was back up to part health wise. They wanted me to go on an all liquid diet immediately. It was doom and gloom and I didn’t have anyone with me to process through what they were saying. I needed them to slow down, to answer questions, and to take the time to discuss everything, the findings, and what they knew was wrong for sure.
About ten minutes after this, a nurse came back into the room and said they had determined I could remain on a regular diet and that the plan was to get me started on two IV antibiotics to treat the infection. They’d do another CT 72 hours later to see how I was responding to the treatment. After the nurse left, I broke down into tears. I called my mom and fell apart. Everything came out in that call. I was stressed from the COVID diagnosis. I was emotionally distraught about being in isolation for 21 days. When they told me I was going to have to go on a clear liquid diet it wrecked me because I already didn’t want to eat food and the thought of having to stick to liquids, jello, and broth honestly made me consider asking for a feeding tube because I just couldn’t stomach it. (No pun intended.)
72 hours passed, I had no more abdominal pain or fevers, and then it was off to the next CT scan. The universe was looking out for me because low and behold, the inflammation improved and there was no evidence of a perforation. The infection was still there but with ongoing antibiotic treatment, it would clear up. I’ve always had some digestion problems, which I chalked up to IBS, but I’ve never been formally diagnosed. I had no clue that I had Diverticulosis. Needless to say, the Infectious Disease specialist is now concerned about a possible autoimmune disorder like Chron’s or Ulcerative Colitis, so once all my chemo treatments are done I’ll get to experience my first colonoscopy. Hooray! (Insert sarcasm here.)
Then came the fun next round of fun – bacteria in my blood. The day they deleted the Diverticulitis, my oncologist ordered blood cultures, due to the possibility of a perforation. As luck would have it, my culture came back positive for Pseudomonas Aeruinosa. This was likely from the Diverticulitis, meaning that somewhere along the way, waste did manage to leak out of my intestine and get into the bloodstream. This put everyone on red alert again because not only is this bacteria resistant to many types of medications, but it has the potential to cause sepsis in immunocompromised patients. For the next 5 days I had to get blood cultures drawn daily, with one draw from my PICC line and the other from a vein in my opposite arm. I had to have my original PICC line removed and a new one placed in my other arm, because bacteria can cling to the PICC lines, get inside of them, and increase risk of infection. The new PICC line bled like a son of a gun when it was inserted, then got clogged from the sticky residue leftover by the antibiotics, so I had to have a special enzyme treatment. BUT … none of my other blood cultures showed any growth after 5 days, which meant I was P-Aeruginosa free. Another thank you universe moment.
I want to take a minute to express my gratitude for the nurses, oncologists, and MDs who supported me through this. I’m very lucky in that I’m on the young side, healthy overall, and that I have a strong immune system when it’s not depleted from chemo. Not everyone who goes through this has that luxury and I appreciate every day that I’m alive and able to live life. I had an amazing team of medical professionals to guide me through the complications, to make sure I got the best care possible, and to help keep me positive on this journey.
Side note – this was my first time staying in the hospital and I have now seen and can say the nurses are the ones who hold things together and run this place. Don’t get me wrong, I respect MDs and the schooling they went through and the work they do, but the nurses are the ones out here doing the treatments, encouraging the patients, showing kindness and compassion and building relationships. Shout out to all of the nurses who may read this. Most of you are underpaid, overworked, and under appreciated. It’s time that we lifted this group up, brought attention to this, and worked toward meaningful, sustainable change.
I’ll get off my soapbox now. The advocate in me could carry on forever.
I hope you had a good week and have something enjoyable to look forward to this weekend. I promise we’ll get up to speed as the entries come out but, I’m scheduled to discharge from the hospital today after my first round of Consolidation Chemo. The doc gave me permission to see Where the Crawdads Sing on Saturday, so long as I mask up and the theater continues to be relatively empty. Mom and I have been waiting for this movie for months, after both having fallen in love with the novel, so I’m glad I get to sneak in one last fun experience before going into isolation for 2-3 weeks.
Take care of you. Be kind to yourselves and others. I’ll see you next time.