Staying healthy during chemotherapy is a top priority, because the consequences of catching even the smallest of colds could be astronomical. When you have a blood cancer, particularly lymphoma this is even more paramount — the therapies are targeting your white blood cells specifically. One of the greatest debates after my diagnosis was how to best protect myself from illness while still maintaining some kind of normalcy, most especially with an 18 month old and a three and a half year old in preschool.
At first, we didn’t change much. I asked my doctors about how to best manage with two small kids, and they all said to live my life and do the best I could. That they don’t put you in a bubble like they used to. None of them have children, so it is very likely that they didn’t realize how impossible it would be if either of my toddlers caught anything. They encouraged me to buy masks and wear them around the kids to get them used to it and to practice good hand washing — which we already do. But, as it turns out, that wasn’t good enough. Catching colds sometimes is simply unavoidable.
The first cold my toddler brought home was mild but never ending. Five days after my first treatment, just a couple days away from when they warn you that your white blood cell counts would be at the lowest, my three year old tuned in my direction and sneezed in my face at the dinner table. Great, I hope he’s not coming down with something, I thought, ran to the bathroom to wash my face and threw on my blue and white mask that made me feel claustrophobic. He passed a scratchy throat and runny nose to my 18 month old a day later. I wore my mask all day every day, but it was almost pointless. They were oozing for weeks. I held my youngest while he wiped runny nose goo all over my neck and clothes, and cried “mommy, mommy huggy huggy”. Our oldest ended up in our bed most nights as he usually does when he’s ill, or scared, or just wants to cuddle and our youngest was up multiple hours in the night for days following that first treatment — the one that would hit me the hardest, so far. We’ve always had an open door policy, and it seemed wrong to try to change that at a time when they need us the most. Remember, they too are trying to process all of the changes in our family during this time. Those of you who are parents understand how extra in need of comfort your children are when they’re sick. There was no way I could isolate myself from my own children; I would’ve had to for weeks. Beyond that, you’d have to be really cold and unfeeling not to hug, hold, love, cuddle and care for your sick kiddos — they already were missing me enough just from the days I was away for treatment and the times I’d have to lay down and rest during recovery. And so, it was nearly impossible despite the mask wearing and the hand washing not to catch the cold. And believe me, I washed my hands every time I touched anything, so much so that my knuckles were bloody.
Nevertheless, that cold wasn’t bad. I sneezed for about two weeks, and had a mild scratchy throat. They went ahead with my second treatment, and the chemo seemed to have knocked most of whatever was left out of my system. The boys were still in need of nose blowing, and when my oldest developed a cough I thought for sure this was the end of the never ending cold. My youngest and I started coughing a day later. I wasn’t as careful with the mask wearing as I should have been in hind sight, because I had already caught the cold and mostly fought it off. I thought for sure that this was the end of the cold and not the start of something new — colds don’t begin with a cough, do they?
It wasn’t until my oldest woke up from a nap, something he infrequently takes these days, with a 102 fever that I realized it was a new virus. Consequently, my youngest woke up with the same fever an hour later, and the coughing got worse… for all of us. It was a deep, productive bronchitis cough. That night, I started a low-grade fever — my white blood cells were at the start of their low dip following my second treatment. In the chemo class, they warn you that if your fever goes above 100.5 to call. I called anyway. The nurse put a call into the doctor to see if she wanted to write me for an antibiotic, but I never heard back.
The next day, I maintained a low-grade fever, but it was a beautiful day something we wait all winter for, and I spent some of the day outside enjoying the sunshine with my husband and kids. Both of my boy’s fevers continued to rage around 101/102 when Tylenol would wear off; we did baths and cool cloths in an attempt to make everyone comfortable. Toward the evening, I started to feel terrible again and phoned the doctor. The on-call nurse called in antibiotics and told me to get cough syrup at the pharmacy. It was after six, so the pharmacy was closed for the night. My parents picked up cough syrup, and I figured I would just get the antibiotic when they opened in the morning.
Looking back, the cough syrup probably saved me from pneumonia. I spent the night coughing and coughing and coughing. It felt like a fountain was spewing from my lungs, surely I should be getting over this if I’m hacking up this much fluid, I thought. Never in my life had I felt this sick.
Just before dawn, I got up to use the bathroom — I was dizzy; I felt like I could barely stand. I took my temperature in the ear and it was 103, on the oral thermometer they sent me home with at the chemo class it was 102. My oldest started waking for the day, and I had to wake my husband, cuddled up still with our youngest — who had been up in the night — to help him. I needed to lay back down immediately. I called my doctors office again and explained the situation.
“There aren’t many emergencies in oncology,” the on-call NP said, “but this is one of them. I’m sorry to say, but you need to go to the ER.” She went on to answer a few questions about the seriousness of the situation; she was concerned I could be neutropenic since it was around the time my counts would be at their lowest, that it would be easy for me to get another infection on top of the cold I already had, and that my body was struggling to fight this off. She tried to calm me by explaining to me that I would get what I needed at the hospital, but maintained the urgency that if left untreated neutropenic fever could be fatal. “Pack a bag,” she said, “they will likely admit you.”
I called my parents to come help, and laid in bed for several minutes trying to will myself to feel better. My oldest son was worried; he leaned on his hands looking at me wordlessly on the edge of the bed. “I’ll be okay,” I tried to reassure him and helped him climb in to give me a hug. I cozied up to him, breathed him in and tried to hold onto that moment so I could remember it in the days to come.
Somehow I mustered up the strength to dress, pack a bag, and down a smoothie before leaving for the hospital with my mom. We felt it would be best for the kids if Nick and my dad stayed behind, so it didn’t seem so scary that I was leaving. I kissed my boys goodbye and told them I loved them a thousand times; I was unsure for how long I’d be leaving them. The last time I left my child to go to the hospital, or really left my child overnight at all, I was delivering my youngest into the world. It was a different time. It was not that long ago. And I ached for that to be the reason I was leaving.
I was to tell them at the ER that I am being treated for lymphoma, that my doctor is concerned I’m neutropenic and that I need to be isolated. My doctor called ahead for me. They “isolated” me in that I was in a different corner of the waiting room, but people still walked by me. I wore my mask; I leaned forward; I tried not to touch anything. One woman was coughing almost as bad as I was, and the tech tried to sit her next to me. My mom had to speak up, and finally, a receptionist moved me into a private family room. The hardest thing about being in a hospital is trying not to get something worse than what you came in with. It would be easy in my compromised state to catch something additional. It was not ideal for me to be there, but I had to be. There wasn’t any other choice.
I was in an isolated room in the ER. Anyone who came in to work on me had to wear a mask for my protection. They ran a series of blood cultures to check for bacterial infections, swabbed me for the flu, and a physicians assistant listened to my lungs. She thought for sure I had pneumonia and ordered a chest x-ray. This would be the fourth time I would be imaged since December.
The breathing treatment was heaven. As soon as the nebulizer steam hit my lungs, I had relief. It was instantaneous. It felt good to feel some quick and immediate results that were positive. They ran an IV with fluids — seemed to forget that I’m allergic to chloraprep — and gave me flu medication just in case it was the flu (it wasn’t!).
When the physicians assistant came back, surprise on her face, to tell me my x-ray was clear, everyone was relieved. But, I did have neutropenic fever. My white blood count was only .9 (normal is between 4 and 10); I basically had no immune system to fight off what they deemed was likely viral bronchitis. They admitted me to an oncology floor, a private isolation room — everything they used on me was left in the room including special stethoscopes to avoid exposing me to something else. They started me on IV bags of antibiotics as a preventative and on the off chance my cultures, which take 48 hours to come back, showed something bacterial (they didn’t!). They also explained that they would keep me as comfortable as possible while we waited for my white counts to improve (Tylenol for the fever, Mucinex for the cough, Albuterol for my lungs, Flonase for my congestion), so I could fight off the virus on my own. It was just a big waiting game at this point — my body had to rise to the occasion; it had to fight.
The nurses on the oncology floor were amazing. They were attentive but not annoyingly so, and they were incredibly sweet. That first day, after coming up from the ER, I could barely eat, talk or move. Nick relieved my mom at dinnertime, my parents kept our boys overnight, and I told my husband to go home and get a good night sleep around 11. I still had a fever at midnight and needed another round of Tylenol, but was able to sleep a decent amount considering. The next day was better. The phlebotomist came in at four in the morning, and by eight I had word that my counts went up to 1.1… slowly rising! They were also able to tell that I wasn’t septic, which was a relief I didn’t even realize I needed to sigh. They were hoping to release me the following day, IF my white count was still rising AND my fever ceased.
One of the infectious disease doctors who came in to see me, asked if my children were fully vaccinated (they’re not!). Not because I’m part of the anti-vaxx movement, but mostly because I’ve spaced out their shots and have some skepticism on when it’s really necessary to deliver them. For example, my husband and I do not have hepatitis, so is it really necessary that our newborn get vaccinated for it at birth? We also didn’t want to overwhelm their growing immune systems with several shots at once — and I waited until my oldest was older than what is recommended to vaccinate him for MMR (my youngest still has yet to receive this one). She asked us if we had gotten the flu shot this year… nope! I’ve never gotten the flu shot, and I’ve never given it to my children. Not because I think we’re anything special, but because my husband works from home, I’m a stay-at-home-mom (didn’t even get it when I was a teacher though) and we use a lot of home remedies to combat seasonal illnesses — the flu shot tends to be minimally effective and has unpleasant additives, I don’t particularly want to pump my children with. But, being in the hospital, with my life threatened by a childhood bronchitis (none of the adults in my life who interacted with me and my kids through all of this caught it) caused me to falter a little on these strong held opinions that I’ve had since my oldest was still in the womb. I never imagined I would be immune compromised when I was putting off my son’s chicken pox vaccine for another year or refusing the flu shot. I started to wonder about all the people we risk by preserving ourselves against these vaccines — mostly out of rightfully placed distrust for big pharma. Since getting diagnosed with lymphoma, I’ve become paranoid about using some of the home remedies I’d relied on, like elderberry. Elderberry works wonders against cold and flu to boost the immune system, but I’ve read that it can help both good and bad cells… would this be especially so for an immune system cancer? I still don’t know where I stand on all of this now — probably pretty close to where I did before despite it all. It’s hard to know what the right answers are… sometimes it feels like there aren’t any… sometimes it feels like I’ve made the wrong ones, but you can only move forward and do the best you can for the people you love.
I tried to walk around my room as much as possible, I returned phone calls from my worried siblings who had called and/or texted my mom several times the day before, and smiled at the pictures my parents sent me of my boys having fun at their house. I missed them terribly and couldn’t wait to get better, so I could return home to them. My husband came in the morning and stayed with me until lunch when my dad arrived — my dad stayed until about three or so, and then Nick returned after he fed our boys dinner until I sent him home again at nearly midnight. I did not eat the cafeteria food, because I was afraid that I could catch something. If the person preparing the food was sick, would I be vulnerable? I was extra cautious. This meant that I needed a stash of food in my room and a family member needed to bring me the rest.
At my sister’s recommendation, I checked out “The Last Mrs. Parrish” from my local library a few weeks before and was about halfway through the book. This book is so good, like probably one of the best books I’ve read in the last five years or more. The lingering effects of the steroids from lymphoma treatment coupled with the breathing steroids made it hard to sleep. And even though sleep is one of the best remedy for healing, I stayed up like the bookworm that I am, until after 1:30 in the morning finishing the book. It was great!
Again, the phlebotomist came in at the wee hours of the night to draw blood. After going to bed super late, it did not feel good when they knocked on the door to notify me they were coming in. I was grateful for the light mask my brother had purchased for me before my treatments began (he researched some things that would be helpful for me on treatment days), so when they turned on the light it had very little effect on me.
My counts were up to 1.7 and I hadn’t had a fever since midnight on the night I was admitted. They were sending me home — with oral antibiotics, an inhaler, nasal spray and Mucinex. It felt so good to be going home.
At my pre-scheduled doctors appointment two days later, my counts were up to 3.6 and my infection fighters went from 300 in the hospital to 1200. I was still on for my third treatment that following week. I could feel myself improving slowly, but I was very tired. My bones ached. As I got closer to my treatment, I was worried about how I would feel entering into another session still feeling weak and tired. I felt almost normal going into my second one. By Wednesday, eight days after being released from the hospital, I felt mostly myself, and Thursday I was blasted with another round of chemotherapy. Thankfully, it wasn’t as bad as I imagined.
It was tough spending most of the three weeks between treatment two and three sick with bronchitis, in the hospital, and recovering. Those were supposed to be days I felt okay, like myself — when I’d have energy to do fun things with my boys. But, I couldn’t.
I wrote in a pervious blog post that the hardest thing about the lymphoma so far was managing with two small kids. This IS still a huge challenge. My three year old has nightmares about robots, and I’m pretty sure my doctors appointments and medicine — most recently the Neulasta they started me on to avoid neutropenic fever in the future, is exacerbating what’s going on his already imaginative mind. The Neulasta is a box stuck to my arm by a catheter for 24 hours following treatment; it has a light on it that blinks green, and 24 hours after the nurse attaches it to my arm it beeps several times and pumps (not noiselessly) medicine into me for nearly an hour. My husband then removes it once it beeps and turns solid green. This last treatment, number three, was the first time I had to have it. The beeping and infusion happened at dinnertime, and we tried to make it as exciting as possible for the boys, so they wouldn’t be scared. But, it does kind of look robotic. I wish I didn’t have to have it; it makes my bones ache. Though it sure beats heading to the hospital again. Staying healthy with young kids when going through treatment might take the cake on being the biggest challenge so far, especially when they get sick. And in case you didn’t know, this is the longest flu season we’ve seen in the last ten years!
While in the hospital, we ended up making the impossible and heartbreaking decision to pull my 3.5 year old out of preschool. Toddlers are petri-dishes of germs, and even though his teachers do a fantastic job sanitizing, passing colds is often unavoidable. I love his preschool. When our local newspaper wrote about this new child centric, discovery based, learning through interest, Waldorf like pedagogy, I was literally in tears. They nurture caterpillars on milkweed and let the butterflies go, they take field trips to the symphony, they are involved in the local community, they snowshoe in the winter, they even tap their own maple tree and make syrup — it’s seriously idyllic! At the time, his teacher’s first open house was a couple days after my due date with my youngest. I needed to go and see this magical place for myself — to enroll him before I lost the chance. I was three days postpartum with our second son when I met the sweet, vibrant, patient, energetic and lovely woman who would be my son’s first school teacher the following September. He has grown and learned so much this year. Having to take him out of preschool — away from this fun environment, his learning, his friends — made me feel like I just wanted to be a normal and healthy mom, so my son could have this experience like everyone else. It gave me serious FOMO for my sweet little guy. His teacher and classmates have been amazing. They brought him letters, freshly made play-dough (today, it was made with dandelions!), the class project for him to do at home, and even a classmate’s fun birthday snack! I’m so appreciative to have such a wonderful class community who cares so deeply for my family.
In our family’s quest to slowly transition to vegan, I find myself excitedly leaning on some of my old understandings of how to be well while learning some new tricks too! I feel glimpses into the future of this state of health and well being I am gifting to my body and to my children, and I’m so looking forward to it.
Be well. Be healthy. However that finds you. ✌🏻